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LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 1 with disabilities: Contributions, guidelines and good practices» LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 2 Maquetación: Alfredo Pérez - Galera Publicidad LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 3 WORK TEAM/GROUP AND CONTRIBUTORS
C. Vázquez de Prada c/ Santa Lucía, núm. 19, 1ª planta • 47005 Valladolid - SPAIN Phone: + 34 983 399 633 • Fax: +34 983 217 565 This product has been developed with financial support from the European Commission Employment and Social Affairs D.G.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 4 LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 5 2. CONTRIBUTIONS ABOUT SEXUALITY OF WOMEN
• "Sex education: the added difficulties" by Efigenio Amezúa
• "Women, disabilities and couple" by Ester Pérez Opi and Joserra Landarroitajauregi
• "Sexual Abuses and Disabilities. Critical questions to the discuss reconsideration" by
Agustín Malón Marco • Book "Get to know your body" published by Agency of easy to read (Latvia)
• "Handicap and sexuality" by CSV (Voluntary Service Centre) Ferrara and A.I.A.S. (Italian
Association for spastic people assistance) Bologna (Italy) • "Personal worries box" by C.J.D. Dortmund boarding school (Germany)
• "The PLISSIT model" selected by C.P.H. Female (Denmark)
• "Safer relationships for everybody – tailor-made courses on sexual health for trainees
with slight to moderate mental disabilities" at Astangu Vocational RehabilitationCentre (Estonia) 4.1 Starting point
4.2 Aim: Educate and play attention to sexualities
4.3 Professionals´ attitude
4.4 Talking about sexuality
4.5 Respecting privacy and intimacy
4.6 Services organization
4.7 Inappropriate conducts
LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 6 «Sexuality and women with disabilities: contributions, guidelines and good practices»
4.8 Personal image
4.9 Social stereotypes
4.10 Contraception and motherhood
4.11 Legal capacity and economic resources
4.12 Leisure and regulations of the centres and access to normalized leisure, and free
4.13 When a disability is acquired
4.14 We also talk with the family
4.15 Giving visibility to all sexualities
4.16 Some conclusions
5. GUIDELINES FOR STAKEHOLDERS (a brief guide to get by) . . . . . 107
5.1 Starting Point
5.2 Sex education aims
5.3 Professionals attitude
5.4 Talking about sexuality
5.5 Respecting privacy and intimacy
5.6 Services organization
5.7 Inappropriate conducts
5.8 Personal image
5.9 Social stereotypes
5.10 Contraception and motherhood
5.11 Legal capacity and economic resources
5.12 Regulations of the centres and access to normalized leisure, and free time
5.13 When a disability is acquired
5.14 We also talk with the family
5.15 Giving visibility to all sexualities
5.16 Some conclusions
LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 7 Nowadays, disability is still a huge source of discrimination for many people in the world, who are often marginalised because they develop in an environmentwhich is unaware of the consequences of their disabilities. They encounter manyphysical, technical and social obstacles to the enjoyment of their basic rights.
Human rights violations against people with disabilities generally take the formof indirect discrimination, including the creation and maintenance of barrierspreventing people, with disabilities, from enjoying a full social, economic, andpolitical life in their communities. When disability combines with other sourcesof discrimination, such as gender based discrimination, the situation of thevictims becomes even more alarming. Society tends to measure women by appearance and desirability to men.
Women with disabilities report that these attitudes are a huge barrier in realizingtheir sexual potential and expressing their personal identity fully.
In the field of education, particularly sex education, many women and young girls have no access to basic knowledge of sex. In the same way, many elderwomen with disabilities report that they did not receive enough education aboutsexuality and reproductive health, so they may have not understood sexualfunctions, were not always able to fully express their needs, or were embarrassedby the subject. More research and work with doctors and health care providerscan help women, with disabilities, to find ways to overcome existing barriers.
Furthermore, women with disabilities would be reassured of their self-worth andwould understand that sexuality is still an important aspect in their lives. Therecognition of their sexuality, the identification of some specific needs and theprovision of information to enable them to safely express their sexuality, andaccurate assessment and management of any sexual concerns are integralcomponents of care, with the responsibility of all the aspects concerned andinvolved in the social integration of women with disabilities.
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This is the context where the SWOD project (Sexual Education in Women with Disabilities VS/2005/0669) has arisen in 2006, with the aim to promote theinclusion at all levels of people with disabilities, through the promotion of thedisability perspective in all areas and within this issue: ´Investigation about thesituation of the women with disabilities and the promotion of networks .
Therefore, the SWOD project has tried to contribute to improve this situation, by developing during 2006 the following aims: • To assess the situation of women with disabilities concerning their access to sex education, body control and reproductive rights compared to men withdisabilities; • To identify specific needs and priorities; • To identify good practice in the field of sexual and reproductive rights and access to equal sex education for women with disabilities; • To sensitise key personnel and relevant actors at all levels on this issue; • To disseminate results and transfer good practices; • To foster collaboration between organisations dealing with people with disabilities and women's organisations, starting with partners in this project. The SWOD project was financed by the European Commission, (D.G.
Employment, Social Affairs and Equality of Opportunities), within the frameworkof the call n° VP/2005/006.
The participating organizations of the SWOD project and this Manual are
• SUSTENTO (Latvia)
Address: Nícgales iela 26Riga LV- 1035 (Latvia)Phone: 371 75 904 37http//www.sustento.lv • Women Training Centre (Estonia) Address: Turu 6A-13Tallinn 11 113 (Estonia)Phone: 372 51 82 818http//www.nkk.ee • Consorzio Sociale Coin (Italy) Address: Via Enrico Giglioli 54/A00169 Roma (Italy)Phone: 39 06 / 571 770 01e- mail: [email protected] LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 9 • C.P.H. Female (Denmark) Address: Kigkurren 8DK-2300- Copenhagen (Denmark)Phone: 45 32 95 01 21http//www.cphfemale.dk • C.J.D. Dortmund (Germany) Address: Am Oespeler Dorney 41/6544149-Dortmund (Germany)Phone: 49 231 9691-0http//www.cjd-dortmund.de • Fundación INTRAS (Spain) Address: c/ Santa Lucía n° 19, Edificio INTERCIMA47005-Valladolid (Spain)Phone: 34 983 399 633http//www.intras.es • AEPS (Spain) Address: Apartado de Correos n° 10247080-Valladolid (Spain)Phone: 34 983 390 892http//www.aeps.es This Manual, "Sexuality and women with disabilities: contributions, good
practices and guidelines" gives recommendations to professionals and people
concerned, as a result of some work done by the partners of the SWOD project
from:
• Working sessions of the translational meetings held in Rome (13/14 of March 2006) and Tallinn (25/26 of May 2006) with the contribution of eachparticipating entity with different groups of people with disabilities. • The appraisal of the good practices presented by each country which make possible to transfer and contrast ideas and innovative programmes put intopractice to deal with the different aspects of the sexuality of people withdisabilities and, more specifically, of women with disabilities. • The results of the comparative Study made in the frame of the SWOD project in which participated women and men with some of the followingdisabilities; physical disability, intellectual disability, mental disability, visualdisability and auditory disability, from four of the country members:Germany, Latvia, Italy and Spain. This study deals with the level of know-ledge, difficulties and needs which express the participating people withdisabilities. LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 10 «Sexuality and women with disabilities: contributions, guidelines and good practices»
• Taking part in the final writing, AEPS (State Association of Professionals in Sexology) that provides a Sexological vision towards Sex Education andFundación INTRAS, as the coordinating entity of the project. • Revision and contribution in the modifications of the draft by the members of the project.
The aim of this Manual is to give several recommendations to deal with the sex education of people with disabilities, especially for women with disabilities.
This function essentially practical has formed the structure of the book: • The first part includes the contributions about sexuality of women with disabilities by sexologist experts • The second part gathers European good practices about sexuality and women with disabilities • The Guidelines for professionals is a record which includes a wider argumentation or explanation of the recommendations, • The Guidelines for stakeholders is a record specially designed for Stakeholders.
It tries to be a reference guide which lets professionals who work with people with disabilities in different training environments, orientate about theimportance of sex education and the promotion and respect to the sexuality of thewomen with disabilities. In the Manual it is especially mentioned the sexuality ofthe women with disabilities, when being in a situation of discrimination orinequality, that makes necessary positive measures to put into effect the equalopportunity, avoiding the double discrimination of being women and having adisability. They are general recommendations which bear in mind the huge existing differences, in what respects to their needs and supports in the formation anddevelopment of their sexuality. These differences are linked to the differences inlegal capacity of decision-making, mobility, resources availability that allows thefree decision-making etc. All these aspects are in some way mediating in thesexuality of the people. From the outlook of the SWOD project and the Manual it is recognised that sexuality and the sex education is something positive and, therefore, cultivable,far from just a simple risk prevention. It is not considered the existence of adifferent sexuality for the people with disabilities against the rest of the society.
There is a need for a sex education and the right to a different sexual life whichwill imply supports that allow the right to formation and information and thedecision- making from people with disabilities being a reality. LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 11 2.1. "SEX EDUCATION: THE ADDED DIFFICULTIES"
By Efigenio Amezúa
Director of the postgraduate course in sexology
(University of Alcalá – Sexology Institute)
Elsewhere, we have expounded what the double formula of sex education in teachingconsists of: firstly and for everybody, following the format of the well-known cycles andsessions during the main stages: and, secondly, with the option subject for the person whoalso chooses all along the different stages(1). The aim of this piece of work is to present students with one part of the Didactics Unitdevoted to the added difficulties for both sexes in this option subject. Two basic ideas areexplained in it. The first one is the notion of common difficulties, already explained in theprevious Didactics Unit, and following, the notion of added difficulties, characteristic ofthe disabled. The second basic idea is the consideration of sex as a value and not as a discriminationor danger source, like all other Didactics Units (which compose the book of sexes) do. 1. The notion of common difficulties When referring to both sexes common difficulties we have explained that each individual is sexed and that every individual lives his/her sexuality in his/her ownway. The notion of common difficulties was introduced by the first generationsexologists – those who wrote at the beginning of the XXth century – to explain, LIBRO SEXUALITY AND WOMEN 18/3/07 10:17 Página 12 «Sexuality and women with disabilities: contributions, guidelines and good practices»
as its name says, the common difficulties that every individual usually founds inhis/her biography, both in the configuration of their identity and in theirrelationships.
In this way, sexologists stressed a notion different from that of disorders or pathologies, more used in clinical psychology and in psychiatry. They also wantedto contribute to reduce the density of the same difficulties, moving them furtheraway from their diagnostic connotation and making them real to everyone.
2. The added difficulties Next to the notion of common difficulties, they set another one which is that of the added difficulties. They are, as its name suggests, the ones which are addedto the common difficulties. Apart from the common difficulties that everyone has,the disabled have also these other added difficulties. That is the reason why theydeserve a special chapter within sexology and, in particular, within sex education.
The disabled sex education is, therefore, the same as general sex education, the one which is devoted to everyone that is. But, in fact, it is necessary to includeits own added chapter. To a great extent, this is what we suggest to sketch below.
3. Groups and sectors We can focus on three groups: firstly, the difficulties typical of the individual abilities known as physical and sensorial. Secondly, the psychic and mentaldifficulties. And, finally, a large group noted for belonging to the disabilitiescaused by social and cultural inequalities.
When approaching each of these sectors in particular, we can observe that all of them tend to have their very detailed own names and nomenclature. We willjust confine ourselves to the main aspects of every group.
4. The main idea The basic idea is that sex has usually been considered as a source of negative discrimination, as well as a confrontation, rather than as a value. This point ofview has encouraged classifications for the different problems: women, on theone hand; homosexuals, on the other hand; and, finally, other minorities.
Considering sex as a value – we insist: not as a discrimination source – offers different points of view. It also provides different ways of perception and action,based on that value. Likewise, common difficulties, as well as added difficulties,may be tackled and, if they're not solved, at least, they mustn't be increased.
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Box 1. Different grades and groups: an example
The names of the groups of disabilities are constantly changing depending on the progress. Here is an example that has been the purpose of special attentionduring the last few years. It is about the intellectual disability, and the need ofintermittent support for which the name DINAI is suggested.
We should start from a dynamic and relative conception of the intellectual disability – said the authors – Dynamic, because it's a condition subject tochanges, which requires advisable methods with which the person can have equalaccess to his/her surrounding resources and can normally participate in thecommunity life.
And we state it's relative, because, such disability is the result of the interaction between the person and his/her environment in the different aspectsof life (family, education, work, etc.) This interaction there are supports which actas mediators, so that a certain disability can become evident in one area but notin others.
This conception leads us to suggest a new term in order to designate these persons problems, according to the dynamic point of view mentioned above.
Therefore, instead of ´person with intelligence limit category we suggest to namepeople with ´intellectual disability and need of sporadic supports , due to itscorrespondence to a perspective orientated to normalization.
That is, we are talking about people with a slight level of intellectual disability, who can reach a life quality and independence by certain supports . (M. Collet, J.
Pascual, E. Rovira and E. Vidaurrázaga, Minusval, Magazine of the Ministry ofLabour and Social Affairs, n° 145, June, 2004).
2. Physical and mental disabilities
1. About sexuation and sexuality Some disabilities have something to do with biographical sexuation and, therefore, with the resulting sexuality.
If sexuation, as we have already said, is a biographical process and sexuality is its consequence, it doesn't have to be strange that these persons with thesehandicaps have added difficulties when building up their own sexuality.
It is convenient, though, not to increase these difficulties. It isn't necessary to say that individuals with these added disabilities are to all intents and purposesmen and women. They are sexed persons who – we don't need to remind you –live their sexuality.
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2. About erotism and love There is a connection between the cognitive organization of the desires (that's what we call erotism), and the strategies and possibilities for its realization, thatis, its ars amandis.
What we are stating is that, with special attention, those added difficulties can be compensated for in a way that these individuals would be able to developthemselves in today's society. The other option is the integration.
If special education has opted for its dedication in a separate group, the integration has put these individuals on an equal footing with the group. Bothformulas have their pros and cons. But, under any circumstances, we must forgetthe aim.
3. About the couple and the procreation The boundaries of these sectorial disabilities have also a consequence when talking about the establishment of relationships, mobility, means of transport,etc., and its repercussions throughout the relationship with other individuals.
Only some of these added disabilities have a direct consequence for procreation. In some occasions, we are talking about tremendous difficulties; weare even talking about the relative impossibility of direct mechanisms. In otheroccasions, they are related to its consequences: for instance, a case of disabilitywhere it may affect the children's care.
The advanced societies can contribute to partly neutralize these added difficulties in order to allow these individuals to fulfil their desires.
4. About the ways, aspects and peculiarities Special difficulties for feeling men, male, or women, female, are one of the logical consequences. Therefore, there is a need of a certain kind of attentionaccording to their own difficulties.
The two aspects of these persons, as well as the two aspects of any sexed individual – heterosexuality and homosexuality – haven't been taken into accountin the past. But, likewise any sexed individual, both aspects are general foreveryone.
Peculiarities require a special mention when talking about these individuals.
Very few studies have been done on this topic, and, because of this reason, wemust go into this topic in greater depth in order to reach new ways of knowledgeand comprehension.
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Box 2. Different attitudes
A new attitude to these situations – some of them are very serious – was adopted by Ramón Sampedro, the Spaniard who fought to win the right to endhis life with dignity. The film ´The Sea Inside from Amenábar has made hisideology famous.
A very different attitude is the one explained by Javier Romañach, who was also a tetraplegic and an active member of the ´Movement of independent life .
Accepting – he explains – what we are doesn´t stop us from being members ofour society. We have been clasified in isolated groups: the deaf, the dumb, theblind, the paralytic, etc. Working on changing that mentality is contributing todevelop the abilities that we have . ´Our aim is not a matter of arrogance but common sense. We don´t only claim for accessibility to buildings or films with subtitles. It´s about the concept thatsociety has about people with functional limitations . This is Jon Evans point ofview, the President of the ´European Network for an Independent Life , explainedin the UIMP Forum in the summer 2004. These different attitudes – either between the disabled or non-disabled – can make us think about these difficulties and how to react to them. Nobody can puthimself in someone else's shoes. But we can all listen carefully to their thoughtsand desires.
3. Second group: psychic or mental disability
1. About sexuation and sexuality Psychic and mental disabilities have an effect on sexuation and vice versa; and, consequently, on sexuality in general. Individuals with these disabilities are sexed,however, they live their sexuality as all others do.
It is important to observe that, with exception of greater and more serious disabilities, tests done don't give any proper or specific data for each individualbut for individuals in general.
2. About erotism and love The main principle mentioned above leads us to understand that individuals with added difficulties feel and desire more to compensate their own psychic ormental disability.
It is also known that their deficits or intellectual disabilities can be compen- sated for by emotional situations. The aim of helping them to channel their way LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 16 «Sexuality and women with disabilities: contributions, guidelines and good practices»
of expressing themselves so that they are more appropriate to the society they areliving in.
Learning several gestures, conducts or simple rituals can extraordinarily help 3. About the couple and the procreation The experiences of the relationships created by individuals with these physic disabilities, according to the different grades, are satisfying. Its aim is similar tothose of the non-disabled, always bearing in mind the obvious help needed.
Due to these boundaries, the procreation is one of the most questioning points because it requires the proper responsibilities to create and maintain afamily. That's why the need for contraception arises.
Within the options for the selection of the most appropriate contraceptives, a basic rule is that they must be easy to use and difficult to forget. Obviously, whentalking about mixed couples, that is those in which there is only one disabled,these cares must be reconsidered.
4. About the ways, aspects and peculiarities There are no special news in relation to identities, but there are some in relation to the grades of disabilities. The experiences of integration have beenpositive. But there are a lot of parents and tutors who prefer a special educationin specialized institutions.
In any case, dependence is one of the more controversial issues within the different grades of psychic disabilities. And, within this dependence and specialeducation can be focused the different added difficulties. We don't need tohighlight the essential sexual sensibility of those who take up this job.
Box 3. Accidents and its effects
This large group of individuals or physical, sensorial, psychic, intellectual disabled is created by many different characteristics. Some individuals have aminor or partial grade whereas others have a more severe one. Some have beenblind since birth while others are blind by accident. Some were deaf by birth.
There is one aspect which is interesting for them all. It is what we call accidents.
Sometimes, it is because of their genes; other times is because of an illness or due to an accident on the road, at work or while practising sport.
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Next to these disabilities there are also the psychic and mental handicaps which are the consequence of other accidents with other names. Moreover, inmany cases, they are the consequence of punctual facts, like the lack of careduring pregnancy or in labour.
The names that we give to these accidents are forever changing and, in many occasions, they are useful for regrouping these different added difficulties. Butthey have something in common: the total or partial lack of the abilities thatothers have. That's why solidarity is a good way of compensation. Anyway, we allhave a lack and we all search for compensations. We are all indigents somehow.
We all remember different accidents in our biography.
4. Third group: sociocultural inequalities
1. About sexuation and sexuality Being sexed is a biographic property of individuals. It is frequently spoken about biological or nature aspects. However, when talking about humans, biologyturns into a lived-in biology, that is, biographical.
It is also visible that other shortages pass this value on the way, representing risks. Men and women identities, as well as their relationships, are normallyinfluenced by ancient ideas, roles or stereotypes which cannot be altered due tothe lack of other values.
The different ways of seeing themselves both men and women, cause added problems for the exchanging of individuals from different cultures. That is thecase of immigration nowadays.
2. About erotism and love The development of desires and ars amandis styles is a sign of cultural evolution and human progress. We are already used to the need of consideringtheir diversity, rather than undervalue or condemn those styles which differ a lotfrom the most common ones. This disqualification is the most frequent cause of many of these added difficulties in what refers to coexistence, when those desires and styles areconsidered strange or odd compared to others.
Market seemed to be the most evident power engine of these desires and styles of ars amandis. How to be individual and live the relations in suchcircumstances? It is education that is in charged of this compensation.
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3. About the couple and the procreation Perhaps it is in the relationships between couples where these social and cultural inequalities are more significant, because it is within the couple that thereis a large daily coexistence.
The implementation of these inequalities and differences causes, on the one hand, an attraction and, on the other hand, some problems. A couple is based ona sexed differentiation. A couple's secret lies in how to harmonize them and turnits imbalance into balance.
Within this implementation of criteria and ways of thinking – as well as ideas and beliefs – the procreation and its regulation is one of its indicators. Apparently,due to the burden of this indicator our period has been named as the period ofthe desired children. Advanced societies suggest procreation as a free anddesired fact.
4. About the ways, aspects and peculiarities Opposite to other period's inflexibility, our period is more diverse every day.
Male and female search for their own balance on equal terms.
The evolution of the society has led us to the approval of homosexual couples.
A couple is the combination of a two sexed individuals, no matter whether theyare the same sex. These changes require some kind of flexibility to understandthem properly. And, therefore, on many occasions, they mean a difficulty for manypeople.
The mixing of all classes and cultures, considered to be a value, brings these added difficulties with it. Difficulties for coexisting when the values are not thesame or they are threatened or contrasted with the others.
Box 4. Some reference terms
Some terms are normally used frequently to refer to these social and cultural added difficulties. We are talking about justice, solidarity and integration. In anyorder, they are words – or values – which circulate everywhere as keys that allowthe inclusion of many others such as respect or tolerance, their differences andtheir boundaries.
They are all about dialogue attempts, and also about how to avoid the risk of exclusion, elimination or cancellation. The measure of equal opportunities foreverybody has been suggested from the Enlightenment and based on humanrights.
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Left wing parties used to be the main defender of these rights, whereas right wing parties have made the expression laissez faire popular. That is everyone hasto manage to make their own way.
These two attitudes try to balance themselves in modern societies. In the middle of these terms or expressions – we insist, values – emerge the sex and itsfundamental aspects which increase the added difficulties.
5. Obstinate facts, tough ideas
1. Idealism and realityIn this study of the added difficulties – and especially when they are accumulating – terms such as idealism opposes realism. It is often stated: ´Wemust be realistic , ´we must start from the reality in opposition to ´beingidealistic , ´start from ideas .
The concept of idealism shows how individuals live and observe the facts from their own ideas. That is, on the other hand, their own ways of living, as humanbeings have their own realities. That's why it is impossible to be realistic and hereis a need of starting from idealism when dealing with any strategy.
2. Reality and sexualityIndividuals – all of them – are sexed and they feel like it and, therefore, they experience reality: their own and someone else's. The concept of sexuality goesthrough that of idealism. And it is from this point where the sexed reality isexperienced, through their ways, aspects and peculiarities.
Seeing oneself or seeing others as either victims or enemies is a fact set a priori, as well as seeing oneself or seeing the others as a mate or friend. The factof having distorted sexuality has a solution: it must be reorganised from acollaboration point of view. This is the main task in the education of sexes.
3. Sexuality and reasonOn the other hand, sexuality is not rational or irrational; sexed individuals are reasonable and, having this quality, this value, they contribute to change reality.
Reality is always a reality lived by individuals. The education, the culture and thesociety try to know and organize this reality in a reasonable way in order to be ableto coexist.
If solidarity tries to guarantee all the people the development of their qualities and the neutralization of their disabilities, the aim is to explain it in the mostreasonable way. It is then of great importance to consider sexuality as a LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 20 «Sexuality and women with disabilities: contributions, guidelines and good practices»
reasonable dimension for individuals to coexist comfortably under tier owncircumstances rather than seen it as a strange reality.
Box 5. Tenacity bonus
A commonly used saying is: facts are obstinate. It is usually used to state the value of the fact. ´facts also count and realities, it is said, they are the very firstthing. In education there is an axiom: If facts are obstinate, ideas are no less .
According to this, some ideas may be strong, as strong as facts are.
As opposed to the added difficulties which lead us to a higher restriction on common difficulties, some ideas offer, at the same time, an additionalreaffirmation. The idea of sex as a value, and not as a restrictive stigma, may haveto be more present. As contrasted with obstinate facts which assert and reassertthemselves, this stubborn idea is reconsidered more firmly.
Some people, instead of talking about stubbornness they would rather call it perseverance or tenacity. Therefore, as opposed to the obstinate facts and theirboundaries, there is the tenacity of the ideas and their changing capacity. That isthe reason why, when talking about added difficulties, it can be explained an extra– a bonus – of tenacity.
Being in these situations, the two most significant terms normally tend to come up: idealism and realism. And, at the same time, the two giants who haverepresented these opinions: Plato and Aristotle. It is funny, however, that, whentalking about being reasonable, both of them usually coincided.
(1) E. Amezúa and N. Foucart, ´El libro de los sexos (Readings for the optional subject of Sex Education) 1. Preliminaries (Nursery Education)2. Mi primer contacto con el sexo (Primary Education)3. El mapa general y sus rutas temáticas (Secondary Education)4. La modernización sexual y sus debates (Higher Education and training cycles)5. Guía del profesorado: Las bases teóricas. Diálogos y controversias. Ediciones de la Revista Española de Sexología, Madrid, LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 21 CONTRIBUTIONS ABOUT SEXUALITY OF WOMEN WITH DISABILITIES
2.2. - "WOMEN, DISABILITIES AND COUPLE"
By Ester Pérez Opi and Joserra Landarroitajauregi Garai
The authors of this project are the members of the Educational Institution of Sexology inMadrid, lecturers of the Postgraduate course in Sexology of the University of Alcalá deHenares, lecturers of the master's degree in Family Therapy of the Pontifical University ofSalamanca, founding members of the state association of professionals in sexology(AEPS) and the co directors of the couple service centre BIKO ARLOAK in Bilbao. Preface: two warnings
First. The title of this project is, by pure ambition, pretentious. The topic is too wide and complex to be sorted out within these limited pages. However, here, weare going to explain briefly – even with severity – some of the keys for themeditation, the debate, and – above all – for the construction of a more beneficialreality for toes who are already suffering the stigma of the lack of consideration ofothers; not their own.
Second. We, the authors of this text, aren't regarding this topic, neutral. We ourselves are partners, parents, lovers, and people who live with other people;and we devote most of our work to work in pairs. Therefore we are not naives but´co existentialists . We already accumulate too much experience to believe thatreal couples come any closer to the idealized couple we all have inside. Wefrequently use the ´backroom and the ´shopping window metaphor to refer tothe public aspect which is shown and the private aspect which remains in theconfidence of the couples. Due to tutelary reasons, and because of the lack ofprivacy, the ´backrooms of the disabled couples are too well-known. This factdoes not mean that they are worse.
1. Introductory notes
1.1. Notes about disability A. What do we talk about when referring to a disability? Every disability affects
some abilities, skills or competences. Therefore, if there is a certain kind oflocomotive skill, there will obviously be motor disabilities; although,honestly, what really exists is a wide range of motor competences. The samehappens with the sensory and intellectual part. Of course, it is true that LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 22 «Sexuality and women with disabilities: contributions, guidelines and good practices»
some people learn quicker, and have more verbal abilities, more empatheticcompetence, a greater ability of abstraction, more deductive insight, a widerspace-time location, more motor refined manners, a more intenseemotional control, more memory, more intuition, wider sight, better ear,quicker, more accuracy, more autonomy, better psychomotor ability, bettersphincter control.; And others, obviously, less. Then, we are all somewherewithin the range of competences of the several different human skills.
Therefore, we are all, in some cases, unskilful, incompetent or disabled.
That is, less valuable; basically, disabled. But – and this must be underlined– we are also, in other skilful aspects, competent and capable. I mean,valuable. We can be defined by what we have or by what we lack; by ourwealth or miseries, by what ´we are more or what ´we are less . The blind person can be defined by his/her visual decrease, but also by his/herauditory or tactile accuracy. They are two ways of assessment; eitheroverestimate or underestimate him/her. B. Odious comparisons. There is nothing of substantial in the disability: no-
one is, by nature, disabled. Some people are more or less skilful in somecases than in others. Furthermore, we can be more or less valuable than theaverage or the expected idea. We are talking about comparisons. And, theyare, as we all know, odious.
C. Few labels for such a wide diversity. Behind the Disability label there are too
many facts of diversity for the label to be useful when defining anyone inparticular. Even more, for describing any group. Therefore, we mustconsider the personal peculiarity and the individual facts of diversity.
Beyond the common label, there is little in common between a slight limpand a serious paralysis; little is what someone who is suffering andsomeone who doesn't feel anything, someone who can't smell or someonewho can't taste. In the same way, it is not the same that someone pushesyour wheelchair or that they decide your own life. And, above all, it is verydifferent to be able to create your own speech and having the gift to expressyour own desires and demand your rights than living under constantprotection and being even protected from yourself.
D. More than a social stigma. The incapable people remain undervalued by a
triple stigmatization: a) the one which derives directly from its decrease orlack of skill, b) the one which derives from being in the world feeling ´less than others, or ´less than certain unachievable expectations, c) and theones which derives from this poisoned dialogue between abilities,disabilities, over abilities, validities, invalidities, prices and values.
Moreover, the disabled women bear a social underestimate bonus to which,apparently, the providential women's tendency to have a low self-esteemand a private contempt are added. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 23 CONTRIBUTIONS ABOUT SEXUALITY OF WOMEN WITH DISABILITIES
E. The goal in first quarter and the ability in last quarter. We are living in a time
where the competences, abilities and validities are overvalued.
Furthermore, the goal is setting higher; then, the higher it is the morepeople remain below it. But our biography is firstly generative and thendegenerative, so that we will all have a future of abilities and disabilitiesahead of us. Without forgetting that our weak and vulnerable humancondition is always vulnerable to accident and the disease. 1.2. Notes about sex A. What do we refer to when we talk about sex? Talking about the couple is
talking about sex. Out of sex the couple is nothing but a duo. However,talking about sex isn't talking about how much fun we have with ourgenitals, but about what we are as sexed individuals.
B. Our position of individual. We believe that the main challenge of the XXIst
century for the Western democracies is the education of a new SexualOrder: that of the Coexistence of Sexes. And that this New Sexual Orderrequires a moral, cultural, social and political formulation that has theknowledge, consideration and coexistence between sexes – both in thepublic and private knowledge – as a fundamental and priority value. So, itall represents a real challenge for us to create a Culture that promotesvalues, abilities, experiences and knowledge that allow men and women tocoexist, share, understand and respect each other with respect,consideration and values in their men and women condition. It must alsobe underlined the understanding acceptance of the multiplicity, diversityand sexuality of the different ways, manners and peculiarities of thatcondition. We do think that it is essential to invest an enormous amount ofresources in it.
2. Brief notions of sexology
2.1 The eighth sexual thesisThroughout the vast history of the Western Thought (we are talking about three millennium) there has been seven notions for sex. They are the following: • Sex as reproduction, from the reproductive thesis, whose conceptual axis are:
generation, genitals, copulation, species, progeny, breeding, pregnancy,contraception, • Sex as erotism, from the erotic thesis, whose conceptual axis is: love life,
desires, attractions, feelings, emotions, relations, seductions, interactions, LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 24 «Sexuality and women with disabilities: contributions, guidelines and good practices»
• Sex as a venereal pleasure, from the hedonistic thesis, whose conceptual axis
are: pleasures, ludus, entertainment, sensuality, sensations, excitements, climax or orgasm, erogenous areas, • Sex as difference, from the sexuated thesis, whose conceptual axis is:
sexuated existence, sexual differences, sexual character, intersexuality,diversity, peculiarities, special features,.
• Sex as sepsis, from the non-septic thesis, whose conceptual axis is:
contamination, sin, vice, disease, excess, blight, guilt, prevention,. • Sex as a way of repression, from the non-repressive thesis, whose conceptual
axis is: prohibition, negation, repression/liberation, to avoid, taboo, silent.
• Sex as an oppression, from the non-oppressive thesis, whose conceptual axis
are: discrimination, violence, hierarchy, domination, naturalization, patriarchy.
The first four (reproductive, erotic, hedonistic and sexuated) are propositive thesis with some kind of capacity to explain issues related to sex. The last three(non-septic, non-repressive and non-oppressive) are theses which don't mentionsex, but its uses and meanings. Because sex certainly is reproduction, erotic,hedonism and difference; and it is not sepsis, repression or oppression (thoughsometimes it seems so) Each of these seven theses was born in different periods of the History of the Western Thought. All of them, more or less, have offered knowledge. Only one –
the non-septic – is practically rejected. However, all of them are productions of
the Former Sexual Order (the Patriarchal Order of the negation of Sexes or the
War of Sexes). One of them – the sexuated thesis - appeared to be the enzyme that
catalyzed the transformation process. Another one – the non-oppressive thesis –
produced the inclusion of what is feminine in public speeches (scientific,
political, media, etc.). Thanks to it we can offer an eighth notion of sex nowadays,
which is genuine of the New Sexual Order (that of the Coexistence of the Sexes).
It has to do with sex as synergy1 from the modern sexological thesis.
This contribution formulates, brings up to date and incorporates in a harmonious way the four propositive classical sexual theses: the reproductive, theerotic, the hedonistic and the sexuated. Nevertheless, the central axis of this newthesis is no longer the reproduction, the love, the pleasure or the difference, butthe beneficial potential of the cooperation between those who are sexuallydifferent; that is, the sex synergy. From this point of view, reproduction (better,procreation), love, pleasure, differences or couple would be nothing but synergicexpressions of sex.
1 - The synergy can be defined as the active competition arranged between two or more elements from which emerge the beneficial characteristics that none of the original elements has and that arise just from its cooperative interaction.
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This thesis is scientifically more sound, theoretically more elaborated, morally more legitimate, more truthful in what refers to the Sexual Act and moreunderstanding with the nature of the Sexes. Moreover, its implementationproduces more benefits (personal, diadic, social, moral, political, intellectual,etc.) than any other we can think of. Certainly it won't be the last one; but, if so,up to this moment it is the best.
2.2. The sexistence within the couple1Above its obstacles or decreases, its abilities, added abilities and disabilities, the People with Disability are: On the one hand, men; and on the other hand,women. Some, more or less male; others; more or less female. Because thematter is more quantitative and polar rather than qualitative and dichotomic; thisis the reason why the Sexology has been using for more than a hundred years theconcept of Intersexuality.
Men and women, hetero and homo, persons who search for others, others who are also men and women. And, due to these searchings, they sometimesmeet each other. And in that meeting: they get excited, seduce, love, attract,desire, link, fear, interweave, touch, smell, feel each other,. It doesn't happenbecause they are special, but because they are general. Therefore, like the others:they are sexed individuals who exist. From this sexuated faculty emerge on theone hand: their differences, diversities and sexual peculiarities; on the other hand,their sexual identities (their masculinity and/or their femininity). And, with thesefoundations, they search for ´others different from me (desire of the other,attraction for what´s different) with whom, if it is a success, will produce the loveencounter. Whereas the first three categories of the Amezúa Map of Sexes(sexuation, sexuality and erotica) remain within the individual and areuntransferable; the following three (love, couple and procreation), depend on thesuccess of the diadic encounter and are shareable.
The thing is that, on some occasions, two unique and unrepeatable individuals – sexuated, sexual or erotic – meet and share each other. And by doing this, theybecome lovers who coexist; this fact gives them the chance to have access tosynergic capacities. From now on we will talk about these two sexistents who,having met and chosen themselves, plan a company of coexistence andcompatibility.
2.3. From the marriage to the coupleTalking about a Couple isn't talking about Marriage, although in some cases they can be united. Couple is a modern concept and Marriage is a traditional one.
1 Efigenio Amezúa (1999, 2000 y 2001) uses the expresion sexistence to underline the existence in this world in what refers to sexed individuals.
Furthermore, he offers six categories which represent what he calls Map of Sexes. These are: Sexuation, Sexuality, Erotica, Love, Couple andProcreation.
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It is true that the marriage has been getting up to date (´from partners to lovers ),but even today they are two different but not distant institutions. Because theCouple may – or may not – get married and the Marriage may – or may not –substantiate on a Couple's bed.
The marriage was born as an institution of creation and breeding of the progeny. And, it wasn't until the XVIIIth century that it obtains the eroticdimension (getting married with and for love) which we know today. The XXIstcentury is being the one that is giving the letter of legal nature to the eroticmarriage, universal and egalitarian (in which the homosexual unions arespecifically included). From these legislative modifications, still very recent, thecivil wedding (not the church one) is settle down as a legal contract, ofcoexistence, cooperative, patrimonial and erotic for citizens with equal andreciprocal rights and obligations, on the fringes of their sexual condition. In legalterms, the principle of legal equality has prevailed; and in epistemic terms, theerotic marriage has prevailed over the father and mother marriage.
Because the Marriage is a public, legal and normative Institution, individuals acquire civil rights and obligations when joining it and take advantage of aframework of rights and reciprocal duties which is regulated from the outside. Onthe contrary, living together doesn't give you any civil right, and it doesn't putitself in a framework of rights and duties apart from the own internalcommitments. Therefore, the Couple isn't a public area of rights and duties; buta private space of desires, commitments and projects. The Couple is the result ofthe privet encounter informally arranged of two subjectivities that are chosen andshared; and whose sources of legitimacy are, necessarily, internal and private.
The Couple is – like the marriage – a diadic and contractual institution, but its entailment is sentimental rather than formal; private rather than public;subjective and subject to the desire rather than objective and subject to the duty.
Its contract – better, its arrangement – is informal. Its legitimacy doesn't emergefrom the permission or the public suitability; it emerges from the arrangementand the private encounter. In the Couple, the coexistential and sexistentialencounter happens between those individuals who desire and entail themselves;and who, in their privacy, solve the ways of their compatibility.
To understand the Couple better (its nature, its dynamics, its existence and its evolution) it would be advisable to distinguish between private and public. Aboveall in a world which mix these two conflicting universes, resulting in an increasingand detrimental public colonization of the privacy.1 1 Probably there is nothing more reactionary and non- human that the already widespread slogan: ´the privacy is public (or also:´the privacy is political ) from the Cultural Feminism. Neither the totalitarianisms of the XXth century, nor the Inquisitorial and Counter- Reformist Church havegone so far in the public conolization of the privacy. It is true that things must be understood within their context and that in its origin, it was a well-intentioned maxim which helped to provide protection for the victimized and defenseless wives. But it is, undoubtedly, the worst slogan of thefeminist movement. It is convinient for all that the prevention of a risk wouldn´t be useful for the destruction of a value.
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The Couple – married or not, according to its reciprocal willpower – is a stimulating and cultivable value. So, all the groups with disabilities (even themost dependent) can participate and have access to this right and this desire.
With this statement we are not declaring our opposition to the voluntary celibacy;but we are taking stand against the celibate imposition of which many people withdisabilities are victims. Especially those who don't achieve the capacity to expresstheir desires and demand their rights.
Being the Couple a private institution, to have access to it the worth or the flair aren't necessary conditions, and, obviously, if these categories are measured fromthe outside using public parameters. In the couple the valuations would be asfollows: ´loving, choosing and sharing. from the inside, we subjectively think we do.
And that is much more than, from the outside, it seems . When talking about marriage we understand that the principle of legal equality mentioned above (apart from its position in the competence league table) andthe also mentioned prevalence of the erotic principle over the reproductive onethat the marriage has achieved recently, are perfectly extensible to those othergroups that without having been exactly marginalized by the law, they are stillusually excluded. Or what's the same, we do think that they should be able to –without any other requirement but their mutual desire – get married thosecitizens, male or female, supposedly less valid. Therefore, they will acquire theframework of reciprocal civil rights and duties the new marriage provides.
3. Contradictions, dangers and protectionisms
A rigorous analysis of the situation of the people with disabilities with respect to the sexual, love, and the couple turns out to be heartbreaking. Especially if wecompare it with the advances in other fields such as education, work, leisure,health, social welfare, civil rights, etc., that has occurred in the last decades.
Surprisingly, all these advances in those fields have meant an increase in thecontradictions, paradoxes, dangers and protectionisms. Due to this, the changesin the paradigm, possibilities, resources, experiences that the advances havecaused in those fields haven't been accompanied by transformations this field.
The general situation is bad, but it's even worse if the disability is more serious,if the grade of dependence is higher, and if the capacity of value the own desiresand rights in this issue is lower. Very frequently the people with disabilities arevictims of a closely-woven net of lack of understanding, ignorance, lies, falsebelieves around their Sexuality. And their main obstacles come from those wholove them most and who take care of them. Therefore, from those people whostay with them faithfully. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 28 «Sexuality and women with disabilities: contributions, guidelines and good practices»
The tough negation of their sexuated condition reaches levels that not only affect their erotic interactions, but their own identity, aspects such as physicalappearance, clothes and complements (depilation, hairdressing, make-up, etc.)On the contrary and, next to the mentioned above, it is usually expected that theirwilder and less reflexive erotica, more intense and exposed to dangers, moreundesirable and unwanted. Within that strain, they are usually victims of thesystematic negation of their erotic desire, that it is normally accompanied by anobstinate repression that hamper any amatory demonstration, apart from the onewhich happens between the most independent and clandestinely.
To achieve that anaerotizant and antiamatory goal, their responsibles behave like strict guardians. Always trying to hide behind the parents, the scandal,dangers, habits and lack of understanding. All within a framework of totalwaterproofing about any real content symbolically related to sex (they mustn'tsee, hear, know, so that they don't suffer). Sex, then, is tackle from the silence, thenegation, the prohibition, the tabooization, the confrontation with obviousprinciples of reality and the proposition sine die. The result is a certain process ofsexual socialization. We know this model of sexual socialization based on thesilence, the prohibition, the negation and the ´double standard as ´educastration .
The ordinary process of sexual socialization is based on the vicar learning and the empirical experimentation. Therefore, we learn through: models of reference,observation, imitation and experiences. However, for the most dependent theseusual models seem to be undesirable and contradictories. And the observation,imitation and experimentation are limited to the heroism, marginalization andsecrecy. They were born in a family bosom that goes around a couple that livetogether, but it is very difficult for them to reach that framework; which is at thesame time reference, preference and impossibility. Their possibilities of leisureand work allow them to enter in relational networks in which they are both centraland peripheral.
Because of the presumptuousness of permanent ´educability that we normally – without expiration – give them, it seems that they never acquire thecondition of adults which allow them to make decisions that aren't subject to anyexternal supervision. We are talking about the most basic principle of PersonalSovereignty. The protectionism achieves, in some occasions, such lack ofmoderation that they are protected from themselves. Paradoxically, theprotectionist zeal hampers the existence of any correction mechanism ofprotection against the proper protectionism and its undesirable consequences.
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Especially the women live submitted by the inclemencies of a culture that produces hypergamic1 induction and which is, however, in a constant state of alertagainst those who may ´take advantage or use you . Despite the increase and the democratization of the sexual knowledge, with regard to these persons – and if the were living in a culture before theRenaissance – prevail postulates and ideas which derive directly from thereproductive and septic thesis. Therefore, all goes around the contaminations,dangers and threats that apparently the sexual can entail. And around thereproductive axis; legitimacy, undesirability of their conceptive possibilities.
All the above mentioned is useful as a powerful mechanism of amatory segregation which produces a considerable erotic act of depravity. In fact, many ofthese persons have an erotic and amatory biography extremely poor, brief,marginal, clandestine, episodic, impulsive. The consequence is that veryfrequently there are phenomena of disorders of the ´emotional economy such as:living asymmetric, unfair, non-reciprocal experiences with joy, participating inparasitic interactions; voluntarily integrate themselves in circuits of eroticmarginalization, etc.
We are producing an induction of the sex deviation based on erotic objects which in theory we don't want to promote: pornography, prostitution, clandestineand marginal amatory conducts, fetishisms or the homosexual erotic relations bydepravity. Furthermore, we promote predatory erotic relations, subject to thechance of the moment, out of the framework of the couple, out of the emotionalbond and the diadic privacy. We promote brief erotic behaviours, especially forgirls. We build a world of impossible and disabled love between individuals builtfrom the shortage and the irresolute desire. If these were the predominant values,we would not be doing it badly. But they are not; then, we must do something toimprove.
4. Time for solutions, formations and transformations
There is no doubt that we are in a period of movements where some changes are necessary. With all due respect we now offer four.
The first of the possible changes is theoretical. It's about: studying, having the head screwed on, knowing the topic, developing, maturing, elaborating a newepistemology, trying to clarify something in the bramble patch we have graduallygot into.
1 In Anthropology it is used the term ´hipergamia to express the improvement of the personal status through the union with someone who ´is more (taller, elder, more wealthy, more educated, more powerful, etc.). Nearly all cultures induce, especially women, to the hipergamia.
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The second is educational: it's about investing in formal sex education (made with an educational purpose with the appropriate framework and competentprofessionals).If this is generally scarce, it is even more scarce in this group. But,it is advisable not to mistake sex education for the brief, outlying, untimely andstable interventions in the prevention of certain sexual blights which cause socialalert. These prophylactic interventions are only useful if the are additional; but notif they are substitute. In order to avoid misunderstandings and bad practices wemust distinguish between Education and Prevention. Educating is promotingwhat is good and Preventing is avoiding the bad. By promoting the good, moreor less, the bad can be avoided; but, by preventing the bad, even when there issuccess, the good is not promoted. The good isn't the rest, what is left. The goodis a seed that must be sown to germinate. Even though, it doesn't always germinate. Likewise the education only works with values. We will have to search and promote sexual values as universal andagreed by consensus as possible. It may be different approaches – evenconfronted – but some may be sufficiently numerical and acceptable: thecoexistence, the harmony, the cooperation, the commitment, the freedom, thedesire, the autonomy, the satisfaction, the enjoyment, the parental ship. Perhapsit is time to include within the aims some of the following: searching for someonewho loves me as I want to be loved; learning how can I be loved, love him/herwithout stopping to love myself; love him/her the way he/she wants to be loved;accept myself, accept him/her and make myself accept; enjoy, enjoy with his/herenjoyment, enjoy with the enjoyment that my joy gives him/her; build my hopesup, build his/her hopes up, coexist, cooperate, consent, feel sorry, tolerate,forgive, negotiate, ask for,.
The third is political and organizational. It's about promoting, rather than consenting, about acting rather than reacting; about carrying out active policies,rather than policies of consummate facts.
The fourth is pragmatic: It's about giving practical solutions, about searching for possible arrangements, about gradually finding solutions to improve thesituation. It seemed that ´desperate situations call for desperate measures ;however, there is nothing more incorrect and ineffective. It's about, just theopposite, avoiding the big thins and working on smaller issues. It is not aboutsearching for reasons – not even sins – but about offering solutions, even if theyare provisional or limited. It's about lighting a match which illuminates, at least,a few minutes. The idea is to do something specific that helps to improve thesituation of certain people. The result isn't perfect, but it works. However, wemustn't pretend that it is perfect. Improving the situation is enough.
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5. Principles of Normalization and Integration
We don't start from scratch. We have some knowledge about Sexuality, Love and Couple, subject to study and transmissible with enough guarantees ofcertainty and goodness. The Sexology is devoted to it. Moreover, we have enoughexperience in the educational field. And in the specific field of the Specialeducation, we also have very good tools. In fact, many of the progress of the lastdecades become from the knowledge, settlement and implementation of the twomain regulating educational principles. We are talking about the principles ofIntegration and Normalization.
To make it easier we normally explain that the Normalization talks about everything we do with the "special" to make them fit in this world, accepting thatthe world is as it is. And the Integration talks about everything we do with thisworld for it to find room for the special accepting them as they are. Finally, it is areciprocal movement between acceptances and transformations. This formula(as if they were the two oars of a boat) has turned out to be efficient and profitableto channel nearly all the advances made in the last decades in terms of: Work,Leisure, Personal Autonomy, Health, Education or Rights of Citizenship. Weconsider that with regard to Love, the Couple, the Coexistence, Sexuality, theErotica and the Amatory we must follow the same paths as we did with thoseissues. That is, promote them as values, and facilitate its access and universalenjoyment through mechanisms of compensation, cooperation, solidarity andempathy that guarantee its effective execution. Curiously, the Couple is a great framework of Integration and Normalization Certain unsuccessful experiences – mainly marriages struck by an unwanted pregnancy – have been useful to stop the modernist experiments. However, theydidn't fail because they got married, but because they didn't know how to getmarried and how to continue being married. The Normalization grew out of allproportion and the Integration diminished. There wasn't much work ´behindclosed doors . It must be remembered that the co existential success isn't a matterof compatibilities, but compatibilities; it doesn't have anything to do with chosingthe right company, but to negotiate properly the complements. And we mustn'tforget that coexisting, sharing,.is difficult. For these people and for everyone.
6. Suggestions for the dependence
If living with someone is difficult, it's even more when the person is dependent and hasn't got autonomy to solve elementary matters. And even much more LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 32 «Sexuality and women with disabilities: contributions, guidelines and good practices»
when both lovers fall into the tyranny of the routine, full of traps impregnated withinterpretations and subjectivities.
Living together doesn't have to be based always on a ´full time , ´only us and ´forever model. Temporary, partial and many coexistences are possible. You cancoexist in your parents and tutor house, or even in appropriate places with theappropriate staff. But it is also possible to coexist in a Residence (particularly if itis public). It can be as simple as changing some rules and habits. The access toa house is extremely difficult but, there are state-subsidized apartments fordisabled people. It is worth to invest more in that area. Some people find it hard to learn, obviously! That is why we have to make it easier for them, making an effort and a special investment of time, sense ofhumour, patience and energy. Their sex education has to be easy, true and explicit.
It has to be supported by models, gestures and icons, using if it is necessarypornographic material (when there is nothing better). Waiting for their questionsor explicit desires is postponing. Teaching them how to kiss is more important,reasonable and necessary than teaching them how to brush the teeth. Moreover,if the kiss the person they want to they will be more motivated to clean their teeth.
We complain because sometimes they invade public places, making us feel uncomfortable with their erotic expressions. However, we don't make it easier forthem to have alternative places.
The fear of pregnancy is, at this precise moment, a ghost that science and legislation have fairly well solved. Nevertheless, there is no point in sterilizingonly for those who take care of them. This mutilation of their reproductivecapacity is only legitimate if they obtain understandable benefits. For instance:possibilities, opportunities, collaborations, 7. Epilogue
When writing this piece of work the next approval and the launch of the so- called Dependency Law, which will provide more opportunities and a wider roomfor manoeuvre in the area of the disabled, are still pending. The future SpanishNational System of Dependency will provide tele-attendance services, technicalhelp for the personal autonomy and the attention within the own family area, aswell as the attendance to either day centres or public or private residences.
Moreover, It is also expected the concession of economic aids to contract theseservices in the private sector or in the area of the own family. All this, opens upan exciting world of possibilities of work in the backroom, and creates a newfigure devoted to the private assistance. It does not solve it all, but it is anotherpiece of good news.
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The persons who are going to assume these tasks will, therefore, turn into very reliable personal assistants whose education and technical qualification won'tever be above the respect for the private rules (unsupervised confidentiality,unconditional commitment, warmth, empathy, etc.). They will respect the right toprivate life (which is universal and they have it), and will accept that the securityvalues and risk prevention must not prevail over those of privacy or liberty.
To sum up, we hope that this option helps to improve the sexistence, the love interaction and the coexistence within the couple of every person with any sort ofboundary; it may favour their desires and needs: it has to contribute to combatthe permanent state of alert and scandal; it would be useful for promoting valuessuch as confidence, kind-heartedness and justice.
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2.3 - "SEXUAL ABUSES AND DISABILITIES. CRITICAL QUESTIONS TO
THE DISCUSS RECONSIDERATION"
by Agustín Malón Marco 1. Previous considerations.
This is an issue written for technicians, professionals and responsibles for the social attendance to the disabled, especially when they are minors or when theirdisability stops them from administrating their own life. This is a difficulty whichmay equally affect the use of their erotic and love life. It is, therefore, an issuedesigned for them, neither for citizens in general nor for those who in theirchildhood may have experienced any sexual abuse. There are the professionalcriteria which guide the elaboration of this issue which main aim is to invitepeople to think critically about what I think is an appropriate and moderndiscourse of the abuse where every erotic experience between adults and minorsis interpreted in a very special way.
However it is possible that either an ordinary citizen or a person who has already had a similar experience can have access to this issue. In that case, I justwant to make a previous remark before going on with our main issue. One of themost worrying aspects of the way this phenomenon has been built during the lastXXth century decades is, in my opinion, the tendency to generalize anddogmatize. Generalizations and dogmas that obviously lead to the simplificationin a field where it is not admitted, because it is always a risk to pontificate aboutrelationships, affections, bodies, desires and fears, experiences, links, suffering,pleasures, feelings of rancour or forgiveness. To cap it all, it is always dangerousto make solid statements referred to the private and intimate world of people.
There are as many experiences of life situations as people who experiment andlive them. Disabled or not, it is not relevant. To the professionals at whom this issue is aimed, I would like to make a remark. I am completely aware of the delicacy of the topic, and it is possible thatmy comments appear to be offensive, inappropriate or even inadmissible, due tothe serious topics we are dealing with. But this is actually the main risk that we,as professionals, have to take in reference to the phenomenon I want to analysehere: the fact of turning sexual abuse into a new taboo. Prohibition causescriticisms, which are made differently from the fixed way. Succumbing to this newtaboo would mean that thought and meditation would stand on end, just whenwe are in very need of both.
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Finally, I would like to warn you that my contribution is going to be deliberately critical, that is making an effort to strain to the limit the implicit logic for thisphenomenon, questioning its arguments to eventually suggest new approachesthat may lead to more reasonable ways of dealing with this kind of facts andexperiences. My policy for approaching children sexual abuse has been featuredby this critical reading. It is an approach in which I must admit I have not beeninterested in primarily because of what we can call professional attraction to thesetopics but for sociological and cultural approaches from which I can alsomeditate deeply about the practice.
I strongly believe that, in order to improve our professional performance it can be helpful to critically revise this phenomenon from the discursive point of viewthat I am explaining. This is due to my understanding of the worrying manners inwhich the sexual dangers that are threatening children are conceived. Thisphenomenon is full of intensive emotions, dramatic dimensions and catastrophicconsequences both individuals and groups. Furthermore, it responds moreaccurately to dubious ideologies and morals than to rational and reasonableprofessional practices.
2. Sexed, erotism and disabled.
The XXth century arises two questions that I consider vital in order to understand better the issue of the so called sexual abuses to minors and tosocially intervene to work in prevention. Firstly, undoubtedly the most important,it refers to the recognition of desire, body and pleasure as being legitimate,honourable and cultivable human realities. Secondly, though it has started toeclipse the first one, refers to the dangers of what we can call the human erotismmiseries. The XXth century shows two questions that are fairly significant to me in order to a better understanding of minor sexual abuses and the social involvementneeded to its prevention and management. Firstly, undoubtedly the mostimportant question, referred to the recognition of desire. Secondly, a lessimportant question which it's starting to eclipse the first one, refers to thedangers of what we can call the miseries of human erotic. Within these dangersit must be underlined the thorny minor abuse question. However, we will talkabout this second question later on, as I would like to focus now on the first one.
This is the recognition of "what's sexual" as a value is undoubtedly heiress to the deepest and most historical cultural transformation where both sexes andtheir relationships, including erotic relations, were reconsidered in completelynew terms. This phenomenon is what some people have called the sexual reform LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 36 «Sexuality and women with disabilities: contributions, guidelines and good practices»
(Amezúa, 2003) Here, the most well-known and spread 1970´s sexual revolutionis only a small sample or consequence, instead of a fact of far-reachingimplications when observed in detail. The framework of that sexual reforminvolved the sexed conditions of all the subjects, with no exception, seen as anoble human value which deserved to be recognised, studied and cultivated in allits several and complex dimensions. It is from this reform that it is assured thatany disabled is also a sexed and erotic subject. We must congratulate ourselvesfor this apparently recent historical recognition, for being subjects with the samevalues as anyone else and with the right to have the most possible enriching life.
Just like the sexual reform would state, is in that life where the sexual and eroticdimension we are talking about should have its own space of recognition anddevelopment.
Anyway, this is theory, and what we need is practice. Although a very few would dare to reject the erotic condition of these persons, a very many, the vast majorityof people, still do not dare to take the steps that are considered necessary for thatcondition to emerge. No-one argues about the complexity of the case, but despitemany reasons a lot could be done.
In people who live with any sort of mental disability, who are socially seen as eternally children, when a specific IQ seems to determine the subject'scompleteness and its world, the facts explained above, appear to be very clear.
Frequently, it is said that this or that person has a mental age of five when theyare 15, 18 or 50. Then, the idea of a five year-old boy or a five year-old girl isseemed as if the way of living in those years would be able to explain the way ofliving, feeling and desiring of a much older person whose ‘mental age' is different.
Nevertheless, clear evidence is forgotten. The evidence that experiences are notjust wishful thoughts either for anyone or for the mentally disabled; we forget thefact that their own biography also marks changes in personality, behaviour andway of thinking. These changes don't allow us to consider this person as a boy ora girl with an adult body. The issue of the erotic and love life of these persons accurately reflects the dangers that this vision can generate, when talking about the development andmaturing process of people, often seen as subjects with an inexistent orproblematic erotic life. And that is true. The mental disabled are frequentlydefined as asexual subjects who, similarly to what happens with children, don'thave erotic desires, needs or interests. This is a stereotyped image which is oftensuperimposed by an uncontrolled, over flooded, obsessive, urgent andthreatening erotic for the others.
And, certainly, to be concrete, the first image is more frequently related to mental disabled women whereas the second one is for men. This is a layout which LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 37 "SEXUAL ABUSES AND DISABILITIES. CRITICAL QUESTIONS TO THE DISCUSS RECONSIDERATION"
all in all follows the same logic of a society where erotic for both sexes is seen andlived differently.
In the same way as the evolution of thoughts and social conditions emphasized the need of reconsidering the erotic condition of the disabled, so asin the XXth century it was reconsidered in a drastic way the sexed and the eroticcondition of the group who, as we have already seen, it is frequently levelled withthe previous one, the one of children and minors that is. Because of theemergence of an erotic moral free of conventionality, mainly in the case ofwomen, it was also suggested the right to erotic and pleasure experimentation forthe youngest. They were pointed out as sexed individuals, and whereas in ancienttimes there had been a great deal of anxiety over masturbation, they were nowencouraged to practise it, in recognition of its positive consequences. On the onehand there was the recognition of pleasure for the youngest, from a curious andmutual point of view. On the other hand, there was the delicate issue of age, fromwhich a girl or a boy could freely achieve an erotic reconciliation with anyone.
Once certain social restrictions, like the marriage as the only legitimate space for pleasure; or moral restrictions, like the assumption of certain types of eroticgames as legitimate variations of the sacred vaginal coitus; or natural restrictions,like the possibility of pregnancy were over, the sexual moral of the XXth centurywas no longer a positive rule which reduces an acceptable erotic reconciliationwithin a designed framework – heterosexual marriage with a reproductivepurpose – in order to be a negative rule where everything was permitted oncondition that coexistence between individuals was also possible. It can be saidthat sexuality became democratic and its practice was within everyone's reach, asfar as it didn't affect citizen's freedom or created damages to the society.
It is therefore understandable that it was also in that moment when appeared the logical conflicts in those fields which seemed to be more problematic whenestablishing a sexual moral, like the one which emerged last century, based on acentral concept: the concept of consent. When referring to minors and disabled,especially those people with the sort of handicap which make them morecomplicated to live in freedom and to defend themselves from being inundesirable situations, are the most delicate areas in this sense.
It is not, and it would not be easy to eventually clarify what it is allowed and what isn't. It is not my intention to try it now. But, What I reckon is positive, is tobe able to recognise the problem and try hard to tackle it carefully, bearing inmind the caustic complexity of real life, with its aspects and hues which reflect thehuman existence when examined in detail. A and, over all, we must do it withoutbringing with us what we have achieved and we know it can make us happier andmore human, like the recognition of the value that exist in the erotic and sexed LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 38 «Sexuality and women with disabilities: contributions, guidelines and good practices»
condition of all individuals with no exception. And I'm saying this because one ofthe main risks of the discourse about the danger around abuse is exactly darkenvalues by the drama and the element of morbid fascination that sometimes, manytimes, has been exaggerated.
3. The abuse discourse, its origin and its key
While the XXth century invited to reconsider the sexed and erotic condition of all the subjects as a praiseworthy quality, it is also true that the XXth century hasalso been the continuation and reinforcement of that look in erotism as damageand an evil deed. This is a historical vision which, in this case, it wouldn't beargued by the traditional channel for sin but by the avenue for being criminal, thevictimise and the trauma. These would be the new referents of the discourse ofthe abuse, the aggression and the harassment – the three new big concepts forthe moral-criminal – which would remain interwoven by the same adjective inwhich once again sexuality would be linked to the wrongdoing. The last decadesof the XXth century laid down the law the question of children sexual abuses andthe violence against women and children. Since the 70´s –80´s in the Anglo-Saxon countries, and, later on, mainly during the 90´s, in the Spanish context, wehave been present at the emergence of this worry. After the sexual revolution ofthe 70´s, where traditional morals relaxed and there was a right to enjoy erotism,there was also a kind of conflicting reaction where the fight for the pleasure whichhad characterized the previous one changed into a fight for the victims againstaggressors. This is what Money described as the ´sexual counterrevolution fromhis antisexual discourse (Money, 1991; 1999).
Generally speaking, we notice that there is a mutation of the erotism, leading to a new reality which adopts the threat outline. Either with the AIDS or any othersexual infectious diseases, either with the rape of women or the minors abuses,either with teenagers pregnancies or the violence in the couple, the discoursefirst established in the 80´s in the United States and which then spread all overthe world was that of the damage and its prevention. A cry of liberation that hadbeen characteristic of the erotic optimism of the 70´s was replaced by theprotectionist pessimism of the 80´s. We went from set yourself free to protect yourself, It went from stopping talking about freedom and responsibility in citizens erotic life to insist on crime andvictims. We stopped talking about main characters to start talking about passivevictims.
I have analysed which ones have been, from my point of view, the main elements for which this discourse, focused on sexuality as a danger – especiallytowards childhood – was imposed in Western countries during the last decades LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 39 "SEXUAL ABUSES AND DISABILITIES. CRITICAL QUESTIONS TO THE DISCUSS RECONSIDERATION"
of the xxth century, mainly in the Anglo-Saxon areas (Malón,2004). From theemergency of a new right moral because of what was seen as a worrying socialcrisis, to the successful emergence of the so called cultural feminism and itsstrategic use of the erotic threat – pornography, rapes, abuses, harassments,slavery – to the achievement of its political aims, going through the symbolicattraction that had the image of sexual abuse in the field of the protection ofchildren or the outrageous use of sexual abuse as a therapy for explaining anykind of problems of the persons who came to the therapy.
All of them collaborated in making important, through different ways, what I call the Terrible Eros idea which has imposed in our societies and consists ofestablishing the sexuality as privileged source of suffering and evilness. In thissocial and professional framework, the conventional connection between what'sevil and what erotic (Cohn, 1987) was restored with tragically real consequenceswithin the ritual abuses that haven't been very noticeable in our country, whereasin the United States they were the reason why many innocent people wereaccused and condemned, due to the paranoid declarations of children and adults.
They denounced, without any evidence, the most terrible atrocities – murderers,rituals, tortures, cannibalism, Satanism – (Victor, 1996; Ofshe and Watters, 1996;Nathan and Snedeker, 2001).
As a result of these social forces charged with a component of ideology, we found ourselves before a successful and emotional anti-abuse discourse (Malón,2003); a discourse which has practically monopolized the scientific and socialthought about this issue. A discourse which, within the framework of what'spolitically correct has eventually converted into dogma its principles and intotaboo its questionability. Thanks to it, our approach to the comprehension ofhuman sexuality is more and more based on its miseries and not on its wealth.
With its successful implementation, our lecture of the relationships betweenindividuals, especially when they acquire that erotic aspect, is seen from the pointof view of the inequality, violence and power. And this is what makes thatsexuality, that is, erotism, be newly defined as a field of suspicion.
We and, therefore, our children consider aggressions, harassment, sexual abuses, sexual tourism, children pornography or criminal prostitution assomething common and normal. A great many troubles that leave behind a trailof victims – survivors, as they are called in abuse literature – which only commoncharacteristic is, apparently, the damage induced by erotism. It is sexuality whichlinks, as we will see, a great variety of facts, experiences and main characters. Itis sexuality which explains the evilness and what causes damage. The result isthen new scenery where sexual abuse, and what people want to imagine, is evenmore and more present, more probable and suspicious, more terrible.
Threatening scenery from which I would highlight three main aspects: LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 40 «Sexuality and women with disabilities: contributions, guidelines and good practices»
1. The sensation that abuses are widespread, and that there are so many abuses. Moreover, any child can be a victim in any moment. That is why allchildren are in danger. 2. The sensation that anybody can be a victim, as well as anybody can be an aggressor. Or what's even worse, that we are all potential aggressors. Thatis why we are all dangerous.
3. And, finally, the premise that these experiences are always serious and tragic, both in its nature and in its consequences for the present and futurelife of the children who suffer them.
This modern discourse about the danger of erotism towards minors has necessarily culminated in professional attitudes and practices consigned tocombat evil. Positions and acts which, with the commendable argument of"saving" victims at any price, have finally supposed a deterioration of theprinciple of what is reasonable, the common sense and the Hippocratic Oath ofbeing nice. From now onward I am going to analyse in greater detail some of the main aspects and principles of this discourse. In order to do this, I will organize myspeech in three concepts which constitute it: children sexual abuse. Firstly wehave the facts, the so called abuses, which are worrying. Secondly, we find adultsresponsible for those facts which, in my opinion, are reflected in what we callsexual, as that is the origin of the damage caused; and, finally, we find minors andchildren who are included in the children's concept and who, as we will see,embraces a wide range of age and personalities.
3.1. Abuse. The danger of the abuse, despite the horrible things it involves, wouldn't have gone so far without its capacity for defining it to a great extent. If we compareinvestigations, the percentages of its prevalence can vary between extremes, suchas 0.3% and 83% (Birchall, 1989; 35) similarly, we can find prevalence's that wouldgo from 7& to 62% between adult women and from 6% to 62% between adultmen (Thomas and Jamieson, 1995). According to Robbins (1995;480),mentioning some studies, sexual abuse impact based on investigations vary from6% to 62& in women and from 3% to 31% in men. Finally, it seems that it hasapproximately agreed 20% between women and 10% between men (López,1994), percentages which are, anyway, still alarming.
The question that comes to mind is, obviously, what's the reason of this statistical variability. And also, the logical answer to this question is that we arefacing the abuse concept problem. Those percentages depend, among other LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 41 "SEXUAL ABUSES AND DISABILITIES. CRITICAL QUESTIONS TO THE DISCUSS RECONSIDERATION"
things, on how we determine what's abuse and what's not. In fact, it is notunusual that a researcher has registered an experience which the assumed victimhasn't lived (Lopez, 1994) or what the Spanish penal code, for instance, wouldnot consider to be a crime. Even more, it is happening the same as forty yearsago, during the apogee of the sexual liberation, when the abuse was not seen asit is.1 What we think here is terrible it is not in Thailand, or what we think here isslight in any other place is defined as serious. It is also possible that what for meis not abuse, for others it would be.
The concept of abuse is one of the most confusing, ambiguous and elastic terms we could find in contemporary social reality. A concept that, at the sametime, tries to also be a legal, moral, therapeutic, ideological, criminal or a meredescriptive term. This term cannot avoid being any of these things and all at thesame time. When one is thinking about these facts, it is inevitable to, once again,make himself the question of what is exactly the abuse and what we think whenwe hear the word abuse. We will see an example of a definition of one of the mostdistinguished Spanish experts in the field: ´The sexual abuse is any kind of sexual conduct maintained between two persons (at least one of them has to be minor) among whom there is a situationof disparity – either for age or power – and in which the minor is used for thesexual stimulation of the other person. (Echeburúa y Guerricaechevarrí, 1999;83)If we just think a little, this definition gives rise to many unknown mysterieswhich would be advisable to clarify: what's a sexual conduct and what's not,what's minor, what's a situation of disparity, to what refers to with the age andpower, what does it mean to use the other for stimulation. I don't mean toconfuse, but simply to notice that the concept of abuse has the special quality ofincluding an countless number of experiences that go from any sort of commentwith erotic connotations, to the most violent sexual aggression; from the finesttouching to an anal penetration; from the fortuitous encounter with anexhibitionist to the lengthy incestuous relation between a father and his daughter.
And what people in general ignore is that studies often include sexual abusecategories, which allow to include within the general data, extreme cases like thesodomy of a three year-old boy, the sexual relationship of a 21 year-old adult witha 16 year-old girl, an isolated act of exhibitionism or the display of pornography toa minor.
It is funny that those acts which, at the beginning, we could consider serious – baring in mind that the important issue is not acts but experiences – seem to bethe less frequent. For instance, in López´s investigation (1994) the most serious 1 Jenkins (2001) has pointed out this issue as an explanatory variable in the scandal of the abuses accusations within the American Catholic church.
In his opinion, many of cases reported many years after the facts were allowed experiences with teenagers. These experiences were lived in a socialcontext which was completely different in terms of sexual permissiveness. The abuse´s obsession at the end of the XXth century has undertakento redefine many of these experiences in violent term, even for the own ´victims who didn´t live them like that (Goodyear-Smith, 1993) LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 42 «Sexuality and women with disabilities: contributions, guidelines and good practices»
behaviour in 22% of cases was improper advances or exhibitionism, and in 51%were only caresses. Only in a few more of 4% was anal or vaginal penetration. The55.79% of the facts happened once and the 20.18% from two to three times.
Approximately in 11% of the cases was a relationship between victim andaggressor. Only in 5% was any sort of physical injury and, in 1%, resulted inpregnancy. Nevertheless, we have attended to an inflation process of the abuse similar to what happened with children's mistreatment. All types of relation between anadult and a minor which has any ´sexual connotation is considered to be abuseand, therefore, very worrying. Added to this are the abuses committed by otherminors, between equals, brothers or children of different ages (Okami, 1992),reconsidering all these experiences as criminal relations.
In my opinion, it is probable that that widespread use of the term sexual abuse, including a wide variety of facts and experiences corresponded toideological and professional interests. It is noteworthy, for example, the fact thatincestuous and non- incestuous relations are out together, as if they werecomparable for its comprehension and management. Furthermore, it is alsonecessary to highlight how the differentiation between violent and non- violentacts has also been sweep from the debate about sexual abuse. Ramey (1979)already pointed out the importance of this remark in order to properly understandthe problem; and jointly with him, many authors did (Goodyear-Smith, 1993;renshaw, 1982). It is not advisable to mix different things, I would say, because ithas no sense to compare incest – or the sexual relations between children andadults – with rape, aggression, harassment, etc. Already in the 70´s Leroy G.
Schultz (1973) did something similar. He highlighted that the effects of the fact ofbeing victim in these cases had been tremendous, both short and long term. Toexplain it, he insisted on the idea that only 5% of these insults included physicalviolence. On the other hand, he made a remark about the fact that a greatmajority of the children who had had non-violent sexual experiences with adultslived these facts without any trauma. Moreover, many of them felt part of anemotional relation. The guilt in victims seems to be away, but it can be favouredeither by parents or judicial proceedings.
Nowadays, the absence of violence is simply seen as a reflection that, through the deceit and the power abuse aggressors can achieve their goals. If this wasn'tlike that, violence was present in the majority of cases. The fact that an adultdoesn't use violence in these experiences it is no longer a mitigating factor of hisacts or a reflection of a kind nature. It cannot even be the reflection of naturalmanner and the spontaneity with which, in some occasions, these relations maystart or last long. The absence of this type of aggressiveness is a mere sign of the LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 43 "SEXUAL ABUSES AND DISABILITIES. CRITICAL QUESTIONS TO THE DISCUSS RECONSIDERATION"
evil nature which hides behind the apparently innocent gestures. Violenceremains latent, as it is a discreet, vile, premeditated and disloyal violence. Theaggressor is, therefore, more coward when his strategies for taking advantage ofthe victim are less explicit.
To sum up, along the lines of this social and scientific discourse about the abuse, the main idea narrated here has been that of label as abuse moresituations, no matter how transcendental or ephemeral these situations are. Theconcept of abuse has successfully won, and has imposed to measure its infiniteand varied reality. Nowadays everything can be equally an abuse.
3.2. Sexual. Therefore, the only way to understand or think that the erotic encounters between children and adults, and more frequently between minors, has been thepresence of mistreatment, the aggression or the abuse, from there the inevitabletrauma. Furthermore, if we add that within its root there is what we call sexual and it's most threatening dimension which reminded of the meanings and languagesof the depravity and the deviation characteristics of the XXIst century, abuse wasthen shown as the most dramatic experience a child can suffer from.
But, what causes all this damage in the abuse? In what exactly does consist the damage of the abuse? Which characteristic do these experiences have that forso many people, including experts, is one of the most destructive ways ofmistreatment? What makes sexual abuse one of the worst experiences a child canlive? Why an erotic encounter between a minor and an adult is so alarming, evenwhen it's affectionate, kind and allowed? I can only think of one possible answer,although I can only explain it hypothetically here: would it be sexual or erotic? Just when we thought that individual's erotic condition had been rehabilitated and extracted from the well of filth, it is trough crime and victims that it intenselyrecovered its evil power. There have been authors who have suggested thenecessity of no dramatizing about these experiences, pointing out, very often, thebiggest trauma comes from what happens behind the experience, and even more,demonstrating the absence of damages in the majority of these cases (Rind,Bauserman and Tromovich, 1998; Kilpatrick, 1992; Kendall-Tackett; Williams andFinkelor, 1993; Finkelor and Berliner, 1995; Sandfort, 1983; Bernad, 2002), thediscourse of the abuse, and the science that has supported it. They all have finallyimposed catastrophic scenery where a direct causal relation has been settled,univocal and inevitable between that experience and problems in adulthood2. Theincrease in possible short-term and long-term consequences of abuse is infinite.
2. This has been recently admitted by Finkelhor (1999) who has rectified at this point by saying what he understands for the ´conventional paradigm of the sexual abuse investigation of which he is one of the representatives. Such paradigm, declares Finkelhor, was supposed to combat skepticismsand prove the existing damage; Due to it, took place a very simple discourse which focused on abuse as the origin of people´s problems in life.
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From drug consumption to anorexia are presented as consequences of the abuse, as web as depressions, sexual problems, difficulties in social relations,anxiety, self-destructive conducts, psychosis, schizophrenia, different perso-nalities, and many other consequences in a list that seems to have no end. Nathan and Snedeker (2001), in his analysis about panics refer to sexual abuse in the United States, made themselves the question which I had suggested in animplicit way. Why and how did sexual abuse turn into an issue whose importanceand social seriousness pushed other types of mistreatment into the background?Why and how was poverty, marginalization, violence or negligence pushed into thebackground within social and professional worries in the interests of the danger ofsexual abuses? If we who have worked with minors know that the most traumaticexperience is probably that nobody loves you, even to cause you damage, why arewe so shocked by experiences which frequently are the only good and kind thing achild has been able to feel from other person? (Coulborn-Faller; 1991) Obviouslythere is something related to sex which makes it really threatening for individualspersonal safety who suffered from their violence, either real or symbolic.
The conclusion of authors such as Ofshe and Watters (1996) was drastic: we have converted a horror in this society, children sexual abuse, into a universal andeternal truth; sexual abuse in general has converted itself into one of the mosthorrendous possible crimes. Therefore, the experiences of children are of lessimportance, because they are only used to reassert our feeling of being terrifiedof abuse. What it is important is that we have the solid and unquestionablebelieve that experience this sort of cases is the most terrible that can happenedto us. That is the reason why abuse is isolated as an object of veneration overphysical mistreatment, poverty, and marginalization or even survival – as I saidbefore – to the Nazi holocaust.
However, I'm afraid that all this is a silly thing and it doesn't benefit anyone, despite the moral businessmen (Okami, 1992) who are interested in theimplementation of these types of dangers and discourses. Businessmen who usea certain type of language where, very often, we come across images associatedto desecration, torture, mortification, slavery or terror. A type of language which,although being appropriate to describe some sad but real tragedies, seldomclarifies a word of the large number of experiences included in the sexual abuseissue. Therefore, if we continue to consider these facts crimes, it may be becausewe are facing the world of the desires and bodies, from emotions and conceptsthat we should reconsider.
The third highlighted point of this analysed phenomenon refers to those who are normally described as victims: minors, to whom can join the people who suffer either LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 45 "SEXUAL ABUSES AND DISABILITIES. CRITICAL QUESTIONS TO THE DISCUSS RECONSIDERATION"
a temporary or a permanent disability to freely have access to a certain kind ofrelationships and experiences with others, as the penal code does. In this sense, it isworthy to analyse some basic considerations about the firmly principles set for theabuse speech. The problem with concepts such as ´minor or ´disabled person is its ambiguity and the variety of subjects who can be included under such terms.
What is a minor? What is the purpose of being minor? What is a ´disabledperson ? What is the purpose of being disabled? It is clear that we are moving incomplex fields which go from cases in which everyone would agree to others inwhich there would be a wide variety of opinions. For instance, In the case ofminors, it is not the same if we talk about a baby that if we do it about a six yearold boy or girl or a 13-14 year old teenager. It is funny, for example, how manystatistical investigations for measuring abuse prevalence normally considerabuses all the erotic experiences which involve minors under 16 or even 18,whereas in our country other criteria such as the penal code or the sexual moralsare not so restrictive. The same observations should be done in the case of themental disabled who, being minors or not, may have difficulties when practisingan informed consent.
Nevertheless, I am not willing to enter into a debate of the age or maturity needed so that the society allows certain types of relationships. What I aminterested in now is that, once accepted that there would be different ages andcases where most of us would agree that that relationship is not legitimate, wemust bare in mind the variety of major figures involved and the result tingexperiences. To sum up, we would have to ask a relevant but easy question whichfor many people has been irrelevant: How has the minor experienced it? What hasthe minor felt? What worries the minor? And, above all, how can we help theminor? In fact, there is a question which is practically not asked anymore. I'm talking about the question of which results damaged by these actions, are those who wecalled victims or their families? Are the involved minors, the adults who look afterthem or is it the society which becomes outraged by these actions? Very often thetraumatic experience of the abuse comes later, when the adults who are aroundthe minor, the professionals who take care of him/her or the community whichhas heard of what has happened have a violent reaction. Apparently, we frequentlyreact better to the moral damage and the outrage resulted from facts than to theexperiences of the subjects who are directly involved. Dwelling on observationsand respecting minors´ experiences simply means to professionally follow theHippocratic Oath of no damaging (Goodyear-Smith; 1993). That is, if there is nodamage, don't cause it; and if there is damage, don't increase it.
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Stating that there might not be damage doesn't mean that the relationships are appropriate or desirables. But, the fact that they don't appear to be desirable ormorally permissible actions doesn't mean they have to be traumatic. As Rind et al.
(1998) points out, we must not mistake the morals for the science. Moreover,science hasn't proved that the fact about being immoral is necessarily traumatic.
Therefore, it is not true that all these experiences are always destructive for the minor involved. It is also not true to say that these experiences are harmless.
Both concepts exist and both are absolutely irresponsible (Renshaw, 1982). It isexactly this simple but powerful idea that we must not forget as professionals.
And also for being professionals we must raise a question which probably hits araw nerve of the contemporary paradigm about sexual abuse to minors. Thequestion refers to whether this way of making up these facts benefits firstly theminors involved in the facts and, by extension, the adults around them. Ipersonally doubt it, because it does not only help the children who are obliged toconvert into drama and suffering what it hasn't been experienced like that. Andwhat's more, it can be helpless to those who certainly have suffered by this fact,running the risk of playing down the importance of the most serious experiencesand making us insensible to the real victims.
´Declaring that any sort of approach is a crime, the slightest insinuation means to minimize and even cancel the proper violation, drowning it into ageneral indignation which already seems impossible to notice when ithappens. (Bruckner, 1996; 171) 4. Professionals and its combat.
When a society like ours builds up a danger of such dramatic dimensions and consequences, as is the case for minor's sexual abuses that society has to spareno effort to immediately combat that danger. Moreover, if the enemy is defined aswicked in his/her motivations and terrible in his/her acts and consequences, it ismore probable that the armaments appear before the combat must be raised tothe occasion.
This issue I'm narrating in the shape of an allegory is more or less what has frequently happened with the institutions and the professionals who have to dealwith these issues, as many of them are trapped in the maxim that the end justifiesthe means. But, which means does the honourable end for finishing with evilnessand suffering have to justify? Or can we just being sparing no effort when it's a factof fighting against horror? If we think that the worst thing that can happen to achild is the sexual abuse, we are not doing anything apart from increasing thehorror and the drama. And this is, in many cases, not as simple as we think.
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We mustn't forget that what I have highlighted before about the variety of facts that the expert has included in this issue are the children's sexual abuse, adiscourse spread to a large audience in the shape of a painful caricature. But ifwe make a difference between violent and non violent facts, we can see, firstly,that the first are less frequent than the second. Secondly, we see that the mostusual conduct tend to move in ambiguous fields where caresses are the mostcommon facts. Therefore, what has really happened is always built in the shapeof a dim, ambiguous and confusing narration. These appreciations may probablyconflict with the social imagery of those who, when thinking about ´abuses theyimmediately imagine a story of violence and mistreating.
As professionals, we must take into account that the problem with sexual abused minors is that they are sitting on the fence, between crime, punishmentand help, between the Hammurabi code and the Hipocratic code (Money, 1991;GoodtearSmith, 1993). The consequence is that as professionals we arefrequently lost in the meditation of what is our real function (Criville, 1993).
Since the middle of the 80´s, John Money (1985; 1991; 1999) has been repeatedly reporting the signs of that antisexualism that he described asepidemic. In the way he explained the situation, Money pointed out that theclearest brilliant idea of the antisexual movement was the ideology and thepractice of the victimism. Thanks to it, criminologists and other professionalsbecame the owners of a great part of the investigation in terms of sexuality,approaching themselves to it from the victim's point of view and from thesupposed damage they have suffered from when taking part in the persecutionand punishment of the responsible.
The new counter-reformation, declared Money, had a particular effect on the increases of accusations, many of them are unfounded, for sexual abuse, and forthe professionals appropriation of a terminology which is basically judicial andpolitical and includes terms such as ´victim, survivor, humiliation, insult, offendand recidivism (Money, 1999; 30). Therefore, there is a contradiction between itsassumed professional goals of help and punishment. Either because he defendhimself by the own professionals or because the law obliged them, as it happensin nearly all of the cases in the United States. These professionals end upconverting into legal agents of the system by participating in the persecution anddenunciation of the assumed responsible for these acts. However, if that confusion between help and punishment has lead to certain depravities in the judicial systems of which many professionals, who are forensicscientists, have been accomplices, we mustn't forget that the other depravity isthe opposite: that one of believing that to help others, minors, it is necessary topunish the ones who are guilty. I cannot spend too much time on this subject, but LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 48 «Sexuality and women with disabilities: contributions, guidelines and good practices»
it directly affects professionals who are involved in social areas, education orhealth, etc. We are professionals interested in the well- being of the mostvulnerable, frequently minors, though we mustn't forget that behind what'ssexual there is often a friendly and kind relation. It is within this relation that theaffection may have been wrongly erotizated, but which is still affection (Renshaw,1982; Sandfort, 1983, 1984).
It is true, and we must not forget, that the experiences that we label as sexual abuses imply issues that are emotional and delicate because they have to do withchildhood, sexuality, family, feelings, pain, taboo, etc. Maybe, in today's world,there are very few well prepared professionals able to face these situations. Manyof us are caught unawares when they happen in our daily work. There is then abig possibility for our intervention to be affected by our prejudices orexpectations, by our values or personal believes. Added to this is the frequencywith which social services leave a lot to be desired when talking about resourcesand management. Apart from this, it is not easy to achieve a good qualificationfor this job, and so we, as professionals, must be moderate in our appraisals andinterventions so that we don't cause more damage to the persons we have infront of us.
We have the tendency to describe every erotic experience which involves minors – and increasingly between minors themselves – in criminal terms: abuse,exploitation, assault, harassments, aggression, and the act of victimizing. Thissort of concepts and labels, which are the only ones available to talk about theseexperiences, simply involve a previous indictment of the facts, a clear positionbefore getting to know them in depth and close doors to any comprehensiveapproach. We should, then, change the lenses with which we observe these factsand refine the language we use to find room for a broad-minded approach. Weshould apply other concepts and even invent some new ones. It has beensuggested that, for instance, it would be possible to refer to participants insteadof aggressors/abusers or victims until we really know the nature of the facts(Goodyear-Smith, 1993).
We should remember that sexual abuse is not a total fact which explains the situation of a minor and which guides the professional intervention or takesappropriate decisions. Sexual abuse is, above all, an experience, a concrete factthat can be lived in many ways – as it actually happens – and to which we mustrespond in a flexible way adapted to the circumstances in which that experiencehappens. The minor or the disabled are not the abuse. They are individuals withspecific personal characteristics and with a certain family and social situation.
Within this situation there are the different experiences that will have differentmeanings depending on the case.
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What happens is that, in this oversensitive environment for combating abuses and reporting its dramatic quality, it is particularly difficult because of the spectresthat surround these experiences. Although it is logical, the spectres become morepowerful and make it difficult for us to act calmly and accordingly. Many of these spectres have to do, and this is something sexologists know very well, with the so popular idea of what is sexual and their imaginable capacityto cause damage. However, if we think about it for a minute, it isn't the sexual partthat causes the damage, but other things we have to worry about. And we mustsay, to make it very clear, it is necessary to insist on this, that sexual abuse isn'treduced to what is ´sexual . It may be that the sexual action itself is not even themost important. What is called sexual abuse is, above all, a relationship. It is thatrelationship and its implications that is worth value. It is neither a matter of apenis, a vagina or an anus, nor a hand that goes under a dress; behind theseelements, behind these gestures there are persons, individuals with experiencesand a so varied way of relating with others that it is very difficult to fit in the strictcategories of appraisal and indictment.
5. Conclusion. Women with disabilities: from abuse to use.
I have started this article by pointing out what, in my opinion, was the essential value that the XXth century had contributed when admitting the sexedand erotic dimension of every subject as an honourable and rightful humanreality. In between those subjects were, obviously, women. Women who havegone from being desire objects to also being subjects of that desire. And, inbetween these women, are those who have any sort of disability, and whofrequently have to face all kinds of challenges and difficulties in order to live andshow that characteristic with a bit of quality.
To achieve this goal, we all undoubtedly need a minimum of protection which guarantees us to be treated with dignity, respect and recognition. A minimum ofsecurity which avoids, as far as possible, those experiences in which we can befeel mistreated, ill-treated, outraged and humiliated as humans. This isindisputable. A type of peace that is probably more necessary for those who, oftendue to their disability, require extra help so that they can live with dignity.
Therefore, we are talking about a constant: about how female sexuality has always been tangled in these two extremes, pleasure and danger. This fact hasbeen precisely analysed by Carol Vance (1989) in its classic novel Pleasure anddanger where in a very accurate way she admits that it is not easy to bid, as both extremes are noticeable. However, she dares to declare her position to pleasure,highlighting what, from my point of view, is one of the keys to this issue: thedifficulty which involves playing intensively with both cards. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 50 «Sexuality and women with disabilities: contributions, guidelines and good practices»
Sex is always guilty until proven innocent, and this appears to be a very expensive statement if we take into account the negative sanctions that arise. Anemphasis excess in the danger takes the risk of converting the discourse aboutsexual pleasure into a taboo . (Vance, 1989: 19) If you intensively play for security, you cannot bid for freedom. Furthermore, what's at stake is not disabled women pleasure but their possibility of linking toothers by that powerful and human practice called erotic. That is the link whicheveryone searches. A link in which, occasionally, pleasure arises. However, thatlinking desire is what leads us to search and find ourselves. Moreover, it is thathuman value which is at stake. The sexed conditions of women, as well as all itsimplications are also on the line.
It is rightful that we try to end up with the suffering that we ourselves generate to each other, often without meaning it, in that search for satisfying the basicdesire of meeting another person. In order to reach that satisfaction, though it may seem ridiculous, the worst thing of all is to make the search difficult by seeing it as a crime, a problem orpathology. That is a decent search, and it's that dignity as well as its expressionwhat we would have to reinforce. Mainly because it is in that process wheremistaken searches, harmful to everyone, would gradually be reduced, althoughthey will never disappear completely.
In other words, the best present that we can offer these women with disabilities it is not to protect them from abuse, but let them be independent inusing a value: Their sexed and erotic condition. And we must not forget thepossibility that these women – as happens with men- may damage others whilesearching for that meeting. But, also in that sense, thinking of those who wenormally call aggressors, the insistence and recognition of riches is the best toolfor the management and reduction of the miseries. Any other approach to "Whatis sexual" would definitely reduce abuses, as well as make them less terrible.
My last warning for professionals, as suggested above, that is, ignoring the existence of this suffering and don´t even try to reduce it, is unacceptable. But itis also unacceptable to exaggerate it, multiply it and forget about human subjectswhen fighting against it. Sexual abuse is a reality which frequently moves inprivate and invisible fields. That cannot be changed. The risky part comes whenyou hardly search for the invisible by rolling the basic principles of coexistence,justice and common sense. It may sound a Utopia, but the challenge is to buildup a better and more civilized society for everyone including women withdisabilities who, above all, are searching for a coexistence with men.
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Money, J. (1999) "Antisexualismo epidémico: del onanismo al satanismo", Anuario de Sexología. AEPS, (5) 23-30.
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LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 55 3.1. BOOK "GET TO KNOW YOUR BODY"
published by Agency of easy to read (Latvia) Good practice type
Published educational book on relationships, hygiene and sexuality, in easy to readlanguage of first level. Centre in which good practice was carried out and brief description of its
activities and structure
NGO "Agency of Easy to Read" has been founded on 2000, with an objective to promote more complete integration process and to shape model of societywhich is based on principles of equality and to ensure accessibility of informationand instruction to people with disabilities.
Easy to Read is known in the world for more than 30 years. Books written in it for children as well as for adults are published, newspapers are published too. Forexample, in Sweden to give people with disabilities possibility to take part in lifeof the whole society, all the Swedish laws and regulations are translated into Easyto Read. In the conception adopted by the Cabinet of Ministers "Equal opportunities for everybody" it was envisaged that since 1999 similar publications have to bepublished in Latvia too. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 56 «Sexuality and women with disabilities: contributions, guidelines and good practices»
The Agency of Easy to Read has been founded to introduce people with Easy to Read and possibilities of its use as well as to publish the first editions in it. Theobjective of the Agency is to develop Easy to Read as a new means ofcommunication for work with people, who have difficulties to comprehendordinary written text. Easy to Read is a means how to make the world moreaccessible to many of our peers - to those who know language badly and want tolearn it, to those who aren't able to hear since childhood, to those who can graspa written text only with efforts, to those who have disorders of mentaldevelopment. Thus a common information space is created which ensures theparticipation of everybody in all the processes which are going on in our society. To facilitate faster and more effective introduction of methodology of Easy to Read in Latvia, the organization actively works in several directions: • Preparation and translation of texts in Easy to Read • publication of special editions - special illustrative material and layout is prepared for them, • distribution of published materials, taking into consideration specific cha- racter of recipients, • organization of groups of readers and the specific features of distribution of reading methodology • Activities of the organization are directed towards popularization of Easy to Read and towards publishing of different literary works as well as laws and Beneficiaries' type of disabilities
Beneficiaries of the good practice are people with mental disabilities and learning disabilities. Good practice description
Everybody has right to read and to understand what is written and to receive the information about the sexuality, what is the key component of human nature.
Due to the luck of publications in Easy to Read language people with intellectual disabilities have been denied the Access to materials related to thequestions of sexual education and sexual health.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 57 Book "Get to know your body" is published by Agency of Easy to read. This is the book of first level in Easy to read language, what means that the main amountof information is given in pictures. It is well known, that pictures sometimes cantell more than thousand words.
The main idea of publication is to give the basic information and to help create discussions about sexual education and sexual health among the people withintellectual disabilities. The main principle of the book is that every page containsonly a couple of sentences. The sentences are short, without complicated words. Written text is complimented by drawings, that help people with intellectual disabilities tounderstand better the meaning of the text, and makes the information accessible.
Book "Helps to understand the physiological development of girl/women and boy/men " it describes the changes which are taking place in the body of girl,when she is becoming the women and the changes which are taking place in thebody of boy, when he is becoming the man. At the same time book is giving thevisual information about the differences between female and male gender.
Readers are receiving the basic information about the standards of personal hygiene, which is of high importance for persons with mental and learningdisabilities.
The sexual relations are described and information on how to use contraceptives is given both for women and men. Readers can learn how to usethe contraceptive and where to buy them.
In the book is described very sensitive issues of our society - masturbation – touching your own genitals for sexual pleasure? This is a normal and healthyexpression of sexuality, but mostly people feel ashamed and embarrassed aboutit. Until now this issue has been very rarely discussed in any educationalliterature. The book is showing that masturbation is nothing to be ashamed aboutand giving the basic information about this process.
Book "Get to know Your body" is the first publication about questions of sexual education on the first level Easy to Read language and is printed in 2000copies. This is first easy guide about the sexual health and it must be taken intoconsideration that the sexual education in Easy to Read language is crucial toavoid teenage pregnancy, HIV/AIDS and other sexual transmitted diseasesamong people with intellectual disabilities.
The book is distributed through the voluntary network of Agency of Easy to read. One of the main target groups are the youngsters with intellectualdisabilities attending the special schools. Special education system in Latvia is LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 58 «Sexuality and women with disabilities: contributions, guidelines and good practices»
segregated from the mainstream education system. Agency of Easy to read hasbeen invited to teacher's educational courses to spread the information about thebook and the interest has been unexpectedly high. The Book is used in the Day care centres for mentally disabled as the basis of information concerning the sexual education questions and evaluated by thepersonnel as the educational material of high quality.
What are the innovative and/or relevant aspects of the good practice?
Perhaps there is no other educational program so invisible in Latvia, as the program of sexual education. Sometimes the question arises – is there such aprogramme at all in the state? The personal experience or information given byfriends is the main source of knowledge of sexuality for majority of youngsterswith learning disabilities. There has been no accessible information about thesexual health issues for people with mental disabilities in Latvia before the abovedescribed book.The publication of information in easy to read language is basedon the fundamental belief, that all the people are equal and are entitled, therefore,to information appropriate to their own capabilities. Furthermore, easy to readlanguage is not just one level. Information on easy to read language is needed fordifferent levels of difficulties. The book "Get to know your body" is the very first published book in the first level of easy to read language about sexual issues and therefore can beconsidered as innovative. Large number of illustrations supplements the text andhelps to understand the information.
Accessible sex education is one of the necessary preconditions for mentally disabled person to raise his/her life quality and the described book is one of thefirst steps towards this goal in Latvia.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 59 3.2. "HANDICAP AND SEXUALITY"
By CSV (Voluntary Service Centre) Ferrara and A.I.A.S. (Italian Association for spasticpeople assistance) Bologna (Italy)Authors: Andrea Pancaldi Profession: CRH manager (Handicap Resources Centre) of Bologna CouncilSpecific competences: Project Coordinator This Good Practice consists in: Coordinating action on the regional territory in order to promote the debate and remark the condition of disabled people and sexuality themes,with a particular attention to the relations and sustainability given from disabled peopleparents, to the disabilities association ships CSV of Ferrara - AIAS regional Comity sessions (National Association for
assistance to spastic people) of Emilia Romagna CSV of Ferrara (Voluntary Service Centre of Ferrara): The Voluntary Services
Centres, provided by the Italian law n. 266/91, are organization supported byvoluntary associations with the aim of promoting, supporting and developingterritorial voluntary.
Ferrara Centre, inaugurated in 1997 Summer, is one of the nine centres active on the regional territory, instituted by the Comity of Management for VoluntarySpecial Fund (constituted by Bank-Funds), with the obligatory reserve-fund (law266/91). From 1998 CSV have been opening through all the provincial territory,three suburban counter-windows (in Argenta, Cento, Comacchio). The CSVAssociation of Ferrara that runs the Services Centres is actually composed by 48voluntary organizations.
A.I.A.S. (Italian Association for spastic people assistance) is a private non
profit, Association scope, that as requested by voluntary spirit, operates in orderto promote and tutelage rights of disabled people for rehabilitation, health,education, instruction, job and social integration in order to prevent what ItalianConstitution provides, in matter of disability. The Association was constituted onthe 24th of November 1954 in Rome Via degli Scipioni, actually still in Rome in ViaCipro 4/H The first Promoters where the parents of cerebral lesion children of Rome, following the example of the international associative initiatives in the USA andUK they noticed that there were not enough public structures for this kind ofservices, they understood that it was the right time to activate in Italy a privateassociation able to provide the prevention and cure infantile cerebral paralysisproblems and problems related to the future existing life.
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A.I.M.S. aims and finalities:
The bases of these associations are in a global vision in order to develop the disabled people culture and solidarity, with the hope that each person, apart fromhis own disability condition, and state of health, has the inalienable right to a freeand independent life.
The users/beneficiaries of these services in the following Good Practice are Parents of disabled people and membership associations of disabled peoplereality.
The Handicap & Sexuality Project aims to realize coordinated actions through the regional territory in order to promote the debate and deepening sexualitythematic and the Disabled people condition, with particular refer to thesustainability of disabled people parents associated to disability sectorAssociations, in particular, the Regional Comity of A.I.A.S. sections of EmiliaRomagna.
Different intervenes and role between the different A.I.A.S. involved: • One coordinating project group, composed from A.I.A.S. section of Bologna, Ferrara and Piacenza that will have the task of setting the project guidelines,and preparing management training route and documental consulting • The rest of the Regional sections, at the moment unable to activate their own project in the referred territory (Reggio Emilia, Parma, Ravenna), willorganize the start up of informative initiatives with the A.I.A.S. supportsections.
PROJECT INTERVENES
Elaboration of a specific questionnaire to submit to A.I.A.S regional sections partners. For this action there will be the collaboration of the Institute of SocialResearch (IRESS Bologna) for the elaboration of the questionnaire, thesubmitting modality and the codifying of the collected data.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 61 Through differentiated intervene regarding the territory realities examined.
• AIAS Bologna. A two days residential Seminary regarding the thematic: Sexuality and Disability with particular attention to disabled womencondition: There will be operating a disabled woman working group, association partnerships, organizing the seminary bases that will start on May 2006.
The seminary will be open to all the debates between the involved partnerships, and there will be the intervention of 3-4 external bearer experts ofpsycho-social disciplines.
• AIAS Piacenza: activation of a workshop group with disabled people parents, leaded by an expertise, it will be scheduled in 6 meetings every 15 days;realization of a public conference event for the kick off project.
• AIAS Ferrara: activation of a working group with disabled people parents, leaded by an expertise, it will be scheduled in 6 meetings every 15 days;activation of a working group with territorial services operators (paid inadvance) organized with the same modality and finalized to the attentionand debate on the project thematic and also on the territorial services.
• Other AIAS sections: possibility of organizing in their territory on request, a Public Event (Conference, short seminary) with expertise available from theproject equip; Organizational aid and informative consulting in order topromote the local even Public Seminary activity
After the research and formation phases the final part of the project provides the activation in the territories of: Bologna, Ferrara, Piacenza of three conclusiveseminaries that will realize: the theatre performances "C3" supported from theAssociation APRE of Cesena; The performance thematic concerns the acquired disabilities it is an event of particular interest, in order to focus attention, on the disabled people "BodyTheme "one of the thematic that interlace sexuality aspects. This specificapproach through the body underlines, Is useful to involve, in the specificthematic, the services and operators of the medical-rehabilitative ambits, causenormally this kind of thematic is treated exclusively in social-educational ambit.
These three final meetings expect to have a seminary part, with the intervention of a coordinator group expertise, and of three different expertises of LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 62 «Sexuality and women with disabilities: contributions, guidelines and good practices»
the different thematic: clinical- rehabilitative, with a rehabilitator (A.Ferrari), theintervene of philosopher that has been writing a lot regarding the body thematic(Umberto Galimberti), and an intervene of psychoanalytic (expertise, yet todefine) Information and documentation activities.
• Arrangement of site of an AIAS Section by a VRD (Virtual Reference Desk) that enables documents, articles, bibliography indications, short films, anddedicated links properly organized.
• Realization of magazine articles concerning the guideline carried out • Realization of an online monograph on the experiences carried out, that may be edited by a specialized publishing house (Carocci, Nis; Erickson…) The Handicap & Sexuality thematic has been considered from the social reality, starting from the '70 years when from one side "contestationphenomenon" and the other side the "institutional discharges", opened thedebate concerning sexuality.
From 1977, in Italy started the debate concerning thematic with specific Rosanna Benzi , on the magazine Gli AltriCamillo Valgimigli on the Corriere della Sera The CEMP of Milano organized the first Conference in Italy A long way has been done till now: • Bibliotheca CDH of Bologna there are more than 300 articles and books of the specific thematic, The CDH through the work of Cristina Pesci, MarinaMaselli, Giovanna di Pasquale and Daniela Lenzi (nowadays the groupdoesn't exist) from 1986 till 2004, organized at least a hundred intervenes bymeetings conferences, formation stages. Others have been operating continuously, Fabio Veglia of the Clinical Centre Crocetta of Torino, Michele Imperiali of Anfass Varese, Riccardo Gabbanelli ofAnfass Prato, University ambit: Valente Torre e Cerrato of Torino, Rifelli ofBologna, Manucci of Firenze.
Continuing and ending with the film of Daniele Segre "A proposito di sentimenti" distributed from the associations Down syndrome people. • The formative activities that has been done in the specific sexuality subject, in order to demonstrate that "special sexuality" doesn't exist for a disabledperson, but that at the same time exists "special conditions" that mayinteract with the "sexual dimension" of the person, the Spinal cord or bone- LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 63 marrow lesion, or serious physical or mental deficits have usually heavyrepercussions, sometimes dramatic, on the development of a fully sexualidentity. These brought to a wide knowledge concerning sexuality of disabledpeople, the example are the increasing groups organized not only by disabledpeople parents, interested to the specific arguments, but also by sons thathave disabled parents. So, talking about disabled people sexuality is not tobe considered anymore a taboo.
At the end there is the necessitate opening the debate to more thematic, in • Realize on line projects and not anymore extemporary personal initiatives • Exchange real life experiences of different actors disabled reality, each one with different needs related to the disability • Support the parents in the elaboration and comprehension of the disability occurred, so that, the person is considered also as a sexual being ever andalways • Deepening of arguments directly with the disabled people involved • Dispose of available experiences, information and documentations in order to evaluate them, with the finality of recognizing them not as an abstract, butas a significant reality in relation with arguments treated where "nothing issaid, nothing is known and nothing is written.
http://www.handybo.it/ in the section dedicated to Handicap & Sexuality services LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 64 «Sexuality and women with disabilities: contributions, guidelines and good practices»
3.3. "PERSONAL WORRIES BOX"
By C.J.D. Dortmund boarding school (Germany) The CJD Dortmund offers about 350 places in a boarding – school system. The conceptis addressed to young persons with learning disabilities, young persons with psychiatricillnesses and under 18s in youth aid schemes. Next to vocational training (or similarclasses) it is part of the youth work concept to offer a training of social competences, partof which is health care education and sexual. Due to the boarding school concept there are groups of eighteen trainees in one houseunder supervision of one qualified youth worker. Except for some single rooms provided forpeople with psychiatric illnesses the dwelling houses mainly have double rooms. Thegroups are mainly mono-gender which works well in content and also the methodology ofthe training of social competence. Sexual education as a part of the youth work in the CJD is aiming to teach a self-determined and responsible approach to sexuality for the trainees. Sexual education in theCJD Dortmund is marked by the idea of fostering social and personal competence. Thisincludes the respect for other people as well as the avoidance of unintentional pregnancyand the infection with sexually transmitted diseases. Sexual education should: • heighten the basic knowledge of sexuality, contraception, pregnancy• foster the ability to talk about sexuality• foster the ability to realise risk situations• analyse emotional, social and roll-specific aspects of partnership• consider different personal, family and cultural influences Relevant for the SWOD project the CJD carried out, three sequences in the frame of thetraining of social competence which are to be seen as good practices in order to theSWOD-project criteria and standards: 1. Personal Worries box2. Contraception – suitcase3. Aids education 1. Personal Worries Box
Type: aimed directly at beneficiaries
Location: CJD Dortmund boarding school
Target Group: Youth and young adults with learning disabilities and/or
psychiatric illnesses LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 65 Right in the entrance area of the dwelling house a letter box named "Personal Worries Box" is attached. Young people as residents in the house have a chanceto put in anonymously informal sheets of paper with personal worries to bediscussed in the house group during the frequently implemented house eveningsunder supervision of the youth worker in charge.
The project is carried out in three houses of the boarding system for a period of three years and has proved to be successful.
A basic requirement is that the youth worker has to have a relationship of personal trust to the participants. The range of topics to ask questions on is not limited to those concerning sexual education or related problems but it proved that an estimated 10 - 15% ofall questions asked deal with sexual or partnership problems. It can be noticedthat questions barely are directly asked concerning sexual problems but often arelinked to sexual education. This means that throughout the course of thefollowing discussion, the supervising person has a chance to direct the sessionand can build links to related topics according to the group situation.
The questions are discussed during the house evening, a weekly event used for the training of social competence. The questioner can decide whether his/hertopic should be discussed anonymously. With the youth worker acting as amediator and supervisor of the group questions are dealt with. Informationalinput is given by the youth worker who of course has to prepare for each meeting.
It is always an option for the guiding youth worker to develop a long-term or mid-term sequence on topics relevant for sexual education which arose fromquestions from the "personal worries box".
It has proved that through the chance to deal with even personal questions within a familiar group with the youth worker as a well prepared expert thequestioner receives a broader range of aspects solving his/her problems. At theend of a session the questioner always has the chance to talk personally anddirectly to the youth-worker. Clients self determination Client can decide which frame or forum he/she wants to useto deal with his problem Clients receive a further platform to discuss personalproblems anonymously LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 66 «Sexuality and women with disabilities: contributions, guidelines and good practices»
At the time of introducing the instrument there was arealisable demand for a platform as the one in question. Inone case the programme was initiated by the traineesthemselves. Through the course the results and frequency ofuse proved that the instrument is suitable for the targetgroups.
The offer is part of the educational concept of the CJDDortmund. A continuous implementation is guaranteed.
Topics discussed in the frame of the training of socialcompetence are brought up by group members. Thus ageneral interest can be noticed and has to be seen as animprovement.
The project is part of the educational concept of the CJDboarding school which is approved by the management.
It is possible to co-operate with experts (gynaecologists,experts from external organisations) and staff of thepsychological-medical service of the CJD Dortmund The main motivating aspect for the developing team was toinvolve groups in solving problems of the individual trainees.
Confronting a group with an (anonymously) expressedproblem of one of the group members guarantees thattopics are group-related with an increasing interest of allparticipants to be noticed.
Suppliers participation All sessions are carried out under leadership and supervisionof the youth worker in charge of the participants. Thesessions are mainly self-designed by the clients but guidedby the person in charge.
Processes management Key processes are triggered off through the methodology ofgroup processing.
It has proved that in all points mentioned in theintroduction, trainees living in houses where the programmeis carried out there is a higher level of sexual educationachieved than in others.
The processes can't be systemised since it is not plan able thequestions asked and thus the content of a session can't beforeseen. The development of long-term lessons on one topicbrought up by the participant can be planned systematicallyand carried out following curricula and fixed methodologies.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 67 The innovative aspect is that processes in sexual educationare brought up by the group (individual group members).
Throughout a discussion between young people familiar toeach other the supervising staff member can get an overviewon processes, level of knowledge and demand of furtherinformation, which can be picked up for further educationalelements.
The impact increases in the same way participants areinvolved in the process of designing contents of the trainingof social competence.
Youth workers in the CJD are to be seen as one link in theentire process of education. The CJD concept foresees anentire education including health and sexual education. Thuscollaboration with psychologists, external experts or otherstaff is given.
Given for all institutions with regular group meetings LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 68 «Sexuality and women with disabilities: contributions, guidelines and good practices»
3.4. "THE PLISSIT MODEL"
Selected by C.P.H. Female (Denmark) During the 1970s the American sexologists Anon and Robertson developed the PLISSITmodel which can be used in helping with sexual problems. The model was developed andthe idea was to use it in psychotherapeutic treatment of sexual problems, but can bereadily used in other types of sexual advising. There are almost no books or articles aboutsexology where the PLISSIT model is not mentioned or used. PLISSIT breaks down different types of assistance into four levels: Permission, limitedinformation, specific suggestions and intensive therapy. Level 1. As the model shows, the greater part of sexual advice is about verbally
and non-verbally giving permission to even talk about sexuality. A satisfactory firststep involves giving the parent and relatives the opportunity to put into words theinfluence the handicap has on sex life and co-habitation, as well as recognisingthat the subject is quite natural and relevant. Furthermore, that it is permitted toexpress sexual desires and needs, as well as asking questions. It is reasonable toenquire on the subject in open, general terms, e.g. "I know from others with thesame handicap that sexual problems crop up along the way. Is this something yourecognise?" Help at this level rarely requires greater knowledge of the subjectthan the client already has. Unfortunately experience shows that a great numberwith a need to discuss sexuality with professionals abstain from doing so becausethey do not feel they are met with the necessary openness (permission). A greatnumber are dependant on others bringing up the subject before they dare speakabout it themselves. If this does not happen they let the whole subject lie. It is theresponsibility of the health and social workers to take up the issue when there isa need for it. Many fail to do this because they: 1) Are frightened of offending the parent's' decency.
2) Are frightened of offending their own decency.
3) Are too busy.
4) Are lacking in knowledge and basic skills.
5) Find the subject uninteresting and/or irrelevant.
6) Are frightened over exceeding their professional competence.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 69 Level 2.There should/must be a relatively frequent follow up of what is known
as limited information. E.g. concerning the specific handicaps typical sexualmanifestations or general information about sexuality, such as information onhow the disablement influences sex life, and what is required to remedy theproblems. Greater knowledge of the specific area than the client has is oftenrequired. At this level it may be necessary to involve qualified sexual advisors.
Furthermore it may be necessary to combine limited information regardingsexuality with general knowledge on the consequences of illness, handicap, age-related changes and treatment.
Level 3. There can be a need for more detailed and specific advice (specific
suggestions), regarding the handling of sexual inconveniences. This couldinclude help in finding suitable masturbation techniques, appropriate aids andappliances or instructions regarding positions for sexual intercourse. Or the needto recommend medicine such as erection encouraging medicine. A premise atthis level is a thorough knowledge of problem solutions. At this stage it is aperfect opportunity to involve a sex advisor.
Common for the PLISSIT models first three levels is that the counselling attempts to give help to self help. A dialogue with the client must therefore beestablished in which support in taking an active part is encouraged. Advice insexology should always be individual, and no universal solution is to be found. Onthe contrary, there are a number of different techniques and support aids each ofwhich the handicapped and his or her eventual partner – along with theprofessionals help – must adapt to their sex life.
Level 4. For some clients, their handicap leads to such a serious crisis reaction
(or fixed problems) that there may be a need for intensive and specific treatment(intensive therapy). Treatment can for example mean specialised sexologytreatment, family advice, psychotherapy or other special treatment. Help at thislevel demands detailed knowledge of psychotherapy and sexology.
Ten pieces of good advice for sexology guidance in practice:
1. Be open minded and curious.
2. Be concrete – do not pack things in unnecessarily.
3. Tell the client that sexual worries are commonplace, whether handicapped 4. Ask open questions, such as "Would you like to tell how much illness has affected your partnership?" LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 70 «Sexuality and women with disabilities: contributions, guidelines and good practices»
5. Generalise and express openly.
6. Move on from less emotional subjects to more emotional ones.
7. Do not moralise and pretend to know it all.
8. Make room for the client to air their experiences. Suggest the involvement of a prospective partner.
9. Respect the client's limits and language. Bring to their attention that they are always welcome back if he or she wishes to discuss the subject at a laterdate.
10. Respect your own limits and limitations. Have other places of referral relevance at hand (Johansen et al., 2001, & Graugaard et al., 2006).
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 71 3.5. "SAFER RELATIONSHIPS FOR EVERYBODY – TAILOR-MADE COURSES ON
SEXUAL HEALTH FOR TRAINEES WITH SLIGHT TO MODERATE MENTAL
At Astangu Vocational Rehabilitation Centre (Estonia) Good practice type: services aimed directly at beneficiaries.
Delivery of sexual health-related training proceeding from the specific needs of traineeswith slight to moderate mental disabilities at Astangu Vocational Rehabilitation Centre. Astangu Vocational Rehabilitation Centre
Started its activities in 1995 and is operating under the administration of the
Ministry of Social Affairs.
The aims of Astangu Vocational Rehabilitation Centre are to assist in the
improved vocational rehabilitation of people with special needs.
Astangu Centre employs specialists with high qualifications who are very familiar with the specific features of work with people with special needs. AstanguCentre has good cooperation with all vocational education institutions in Estoniawhere people with special needs study. As study classes in Astangu Centre havebeen built and furnished considering the special needs of the students, AstanguCentre also serves as a further training centre for teachers from other vocationaleducation institutions and is a practical training base for university students.
Preparation of personal rehabilitation plans
• Diagnostic learning • Rehabilitative vocational training on the basis of compulsory education • Rehabilitative vocational training on the basis of secondary education • Retraining courses LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 72 «Sexuality and women with disabilities: contributions, guidelines and good practices»
• Social counselling • Social skills training• Boarding school facilities• Special education counselling • Psychological counselling• Vocational and career counselling• Supported employment• Speech therapy• Occupational therapy• Music therapy• Physical therapy• Hydrotherapy• Sign language interpreter• Transportation for the disabled • Learner-centred vocational rehabilitation• Participation in the development of alternative employment opportunities• Development of employment support activities for people with special needs• Development of quality standards and accessibility of provided services• Development of national and international cooperation network• Continuing vocational training for professionals working with people with 1. Vocational training department2. Rehabilitation department3. Development department4. Administrative department Number, sex distribution and age of trainees
The Centre has 136 trainees in 18 study groups LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 73 Each group has 6-8 trainees34,13% female; 65,87% maleThe age of the students varies from 15 to retirement Courses on social coping (1 year)Preparatory courses (1 year)Rehabilitation course for post-traumatic clients (1 year)Vocational training courses (3 or 4 years)Courses Diagnostic learning groups
Course on social coping - for students who have studied by the curriculum for students with moderate and severe learning disabilities or students who have noeducation.
Preparatory course - for students who have acquired compulsory education by Rehabilitation course - for post-traumatic clients who have passed primary Study opportunities for students with physical disability
• On the basis of compulsory education: computer services • on the basis of secondary education: Computer servicesSecretarial work Study opportunities for students with learning difficulties
• joinery• baking • baking and confectionery• national handicraft and enterprise• Home economics• Tailoring LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 74 «Sexuality and women with disabilities: contributions, guidelines and good practices»
Students´ statistics By the degree of severity of disability
11,1% moderate degree of severity 40,5% severe degree of severity 9,5% profound degree of severity 38,9% the degree of severity of disability has not been determined or is being specified People with slight to moderate mental disabilitiesFollow up activities: also people with physical disabilities Good practice description
The project idea was promoted by the failure of the national curriculum for health and family life education to take into account the specific need of traineeswith disabilities, i.e. setting aside more time for this type of education as well asmore frequent repetition of information delivered. A further factor being absenceof any national-scale government-run initiatives to deal with the specific needs oftrainees with disabilities relative to health education.
he project served as a contribution toward reaching the general objective, i.e.
the social rehabilitation of Astangu Vocational Rehabilitation Centre by means ofintegrated training and overall personal development of the target groupmembers, as well as the ultimate goal of HIV/AIDS prevention and responsiblesexual behaviour among the youth in Estonia.
The project objectives were to
• minimise the number of unwanted pregnancies and consequent abortions among the trainees • disseminate information among trainees about male-female relationships in general to help them better manage their sexual behaviour in the face ofdisability • deliver knowledge on sexually transmitted diseases and the HIV virus • Improve the trainees' coping skills and contribute to their self-reliance in professional and private life also in the long-term perspective, i.e. afterleaving the Centre.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 75 The tailor-made course included topics like
• sexuality, incl emotional aspects: feelings, relationships, limitations, etc, physical aspects: anatomy • family planning • contraceptive devices • sexual behaviour, incl relationships with partner (rights and obligations; saying "no" in situations involving emotional pressures) • access to assistance (developing courage to approach a doctor and talk about intimate things; developing courage to buy contraceptives) • condoms, prevention of sexually transmitted diseases • sexual abuse, violence in intimate relationships Frequency: two times a month during one academic year.
The methods used:
The main method - group work. Other methods: discussions, role-plays, watching of thematic videos; in case of need working individually with targetgroup members The groups segregated by gender, i.e. male and female trainees in separate Estonian Sexual Health Association Youth Counselling Centre at Lääne-Tallinn Central Hospital The follow-up activities include cooperation with the Estonian Sexual Health Association and initiation of the activities of two more groups: two groups oftrainees with mental disability and two groups with physical disability.
What makes it good practice?
• courses on sexuality designed specifically in view of the specific needs of male and female trainees with slight to medium mental disabilities, i.e.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 76 «Sexuality and women with disabilities: contributions, guidelines and good practices»
setting aside more time compared to the allocation of time in the nationalcurriculum • selection of topics to be discussed, among them managing one's sexual behaviour in the face of disability • additional benefits deriving from identification of further needs of the target group, in particular needs for individual counselling • collaboration with partners, (stakeholders) like the Family Planning Union and the Youth Counselling Centre at Lääne-Tallinn Central Hospital • elaboration of a training scheme transferable to other interested actors LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 77 By Carlos de la Cruz -AEPS – (Spain) and Teresa Orihuela - Fundación INTRAS- (Spain) 4.1 STARTING POINT
All sex education should be put into context in the frame of normalization and self-determination. Everyone needs to receive sex education and have the facilities to be ableto live their own sexuality. This is also the case for the people with disabilities. On theother hand, professionals should contribute to educate and, as far as possible, providethese conditions. Obviously, we think that the people with disabilities, men and women, have the right andneed to a suitable sex education, and the necessary conditions and resources to satisfytheir necessities related to sexuality. This is the reason why we believe in the differentprofessionals who work with these persons as agents of a great importance. It is important for professionals to talk to each other about these topics and they have tobe able to promote and facilitate the participation of the people with disabilities, with theaim of reaching a consensus on the criteria. It is important for Sex Education to be aresponsibility for everyone and not only for some people and it is also vital that everyoneknows how to react when being asked about certain things or situations. Apart from other facts, it is about how to reach a consensus and the necessity of privacyof these people, about how to elaborate certain guidelines, and about how to suggeststrategies to deal with all the topics related to sexuality in the best possible way. The challenge is to take sexuality out of the hidden corner and manage to make it partof daily life. As professionals we must consider everyone we work with as sexed.
Undoubtedly, this includes all the people, no matter the disability. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 78 «Sexuality and women with disabilities: contributions, guidelines and good practices»
By sexed persons we mean they will all be men and women. They will not be, in any case, asexual. Each man and woman is unique. There are many ways ofbeing men or women. Because neither all men nor all women are equally built.
There are many possibilities. As professionals we must know this idea and all it implies. Knowing that what makes a real man or woman is not the size or the shape of their genitals or body,neither the erotic conducts they must be interested in nor the fact of approachingcertain models of beauty or the chosen option of assuming certain roles. noneof these aspects, or of many others, gives the category of being a man or awoman. We are aware of all the men who feel like men and who are real men. Te same happens with women: all those women who feel like real women. The task nowconsists of transmitting that knowledge. The persons with disabilities, like all therest, need to know that between men and women there is no competetition, butcoexistence. All men and women are real men and real women. The disability, ofcourse, neither adds nor subtracts the opportunity of taking part in thesecategories. Something similar happens with desires and conducts. There are many individual differences. For example, not all desires are heterosexual, nor all eroticpractises are reduced to the coitus. There are caresses, kisses, fantasies,masturbation. There are people with many and varied desires. This time isconvenient to talk about sexualities in plural, because there is no a unique way ofexpressing sexuality. Moreover, most of the erotic conducts are also provided with meanings. Those meanings have to do with values, beliefs, expectations. with many things. Whatmakes two conducts apparently identical can be very different between them. All in all, the starting point is knowing how to educate and pay attention to the sexuality of people with disabilities, educate and fulfil their sexualities. Because,like the rest of the people, they are plural and diverse both in how they are and inhow they live and express themselves. A final detail, we talk about men and women. Obviously, both sexes: live and express themselves. Both with the same legitimacy. We still believe that it isnecessary to insist on the sexuality of women, as well as of men. In some aspectsprobably, it shows differently, but it doesn't make it better or worse and, clearly, itdoesn't turn it into a subsidiary of the sexuality of men. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 79 GUIDELINES FOR PROFESSIONALS
4.2. AIM: EDUCATE AND PAY ATTENTION TO SEXUALITIES
The aim of sex education is to provide the knowledge, procedures and attitudes which helpin the fact that every person is sexed. These objectives must allow us to work with everyperson, and not only with those who are at risk. Therefore, they would learn to knowthemselves, to accept themselves and to express their eroticism in a pleasant way,improving their quality of life. Sex education is not only a matter of risk prevention. According to the WHO (2000) sex education is the promotion of critical thinking with which the person can recognize, identify and accept himself/herselfas a sexed and sexual individual, with no anxiety, fear or feelings of guilt. Sex Education cannot be limited to the ´prevention of unwanted pregnancies or sexually transmitted diseases like AIDS . Sexuality is not only about reachingorgasms. If it was like that, we would only teach sex education from youth and tothose who have a partner. Trying to sort out what to do in some problematic circumstances as in public masturbation situations, or what to do when somebody request help tomasturbate, or to go to a prostitute…, should be part of the professionals´ job.
But this is not the end of Sex Education. Sexuality must not be considered a danger or a problem. That is why Sex Education can not only come after dangers and problems. All men and women need sex education. No matter their erotic activity or how
much interest they show about the issue. There is always something to do.
The aims of educating and paying attention to sexuality must let us work with all sexualities. Avoiding being taken in by the same tricks we want to avoid:considering sexuality as something negative and reducing sexuality to coitus andreproduction Learning to know oneself
We will try to achieve that boys and girls, men and women, learn to know themselves. Learning to know how they are or how they work. And, moreover,persons of the same and different sex respectively. It will be important to also know how organs, penis, vaginas, erection, lubrication and ejaculation work, some other topics which are also important.
Sexuality is all over the body, so we should know the whole body. Talk about theskin, about sensibility. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 80 «Sexuality and women with disabilities: contributions, guidelines and good practices»
Getting to know oneself is also knowing the differences. It is learning that we are unique and unrepeatable. Like men and women. There are neither good nor bad. People with disabilities naturally need to know each other and the others. And, if we are talking about mental, intellectual or sensorial disabilities things are moredifficult. We will try them to get to know each other. It is worthwhile. Learning to accept oneself
Sex education must help boys and girls, men and women to accept themselves. To be happy with what they are, to feel they are worth it. They should be ready for pleasure, affection, erotic relations, and also for the reproduction if they choose it. They are real men and women. This is not an easy task. Many men still consider that their masculinity is connected with the size of their penis. In the same way there are women who stillthink that their femininity is measured by the number of men in which they arouseerotic desires. There are more examples. Being a man doesn't consist of always taking the initiative in a relationship or that you like football. And being a woman doesn'talways mean being tender or going shopping. It is easier to accept oneself when you get to know yourself, when you are aware of your quality as a man or woman, which doesn't depend on all these issues: size,measurement, number of relationships, beauty models. when the person knowsthat a disability does not add or take masculinity or femininity away. We insist, this is not easy at all. The media, films, magazines,. continue showing only certain models of men and women, leaving behind all the rest. Toaccept oneself in those circumstances is difficult. Even more in the case ofwomen, where the pressure of being and acting in a certain way is higher. Our task as professionals is to offer models of women and men where everyone can be reflected. Offer margins in which everyone is included.
Obviously, homosexuals are also included. We don't give the name man or woman. Nobody does. And this is the reason why we have to treat men and women with disabilities genuinely. Because they aregenuine. Learning to express the erotic in a pleasant way
We talk about satisfaction. And, therefore, about feeling that what you do is worthwhile, and makes you feel good. That is why we don't only take about LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 81 GUIDELINES FOR PROFESSIONALS
heterosexual coitus, but also of masturbation, fantasies, caresses or any otherpractice with which a man or a woman, alone or with their partner, tries to gainsatisfaction. This aim also includes achieving that men and women avoid non- desired consequences with their practices, like pregnancy or infectious diseases.
Although it is not only that. Erotic practices are always accompanied by meanings, depending on the values, beliefs or expectations of each individual. That is why we know that, to getsatisfaction, "what you do" is as important ´how you enjoy what you do . Everyerotic relationship is different. Exactly the same happens to people with disabilities. Satisfaction is not just a matter of practice. It is obtained with certain practice and under adequatecircumstances. Our job in this case is to help each person to be able to be coherent with their
desires and to find the best circumstances. Obviously without seeing erotic
relationships as an obligation or an exam to have access to ´normality . You can
enjoy and be happy with coitus, but also without it. Eroticism is plural and has
many possibilities.
We should try to help each person to find his/her answer. Better than deciding what's better for them in each case. As professionals, we must learn to listen tothe main characters: always men and women with disabilities and, sometimes,their families. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 82 «Sexuality and women with disabilities: contributions, guidelines and good practices»
4.3. PROFESSIONALS´ ATTITUDE
It is necessary for professionals to be aware of the fact that we also educate with theattitude and all together should offer a coherent and non-conflicting environment.
Professional's attitudes must always be tolerant and respectful to the sexual diversity, aswell as to different orientations and sexual practices. Training for professionals who work in this area is essential. This training should includeprogrammes, disciplines and knowledge based on sexological science, which counts onprofessionals capable of transmitting attitudes, knowledge and procedures which permita positive work on sexuality. All adults, in contact with people with disabilities, have, in a way, an influence
on their behaviour. Therefore, they are all educators to greater or lesser extent.
Every body educates: with what they say, with their silence, with their gestures,
with their permission.
This happens both with people who work in a Service and with members of the family. It also happens with other social agents, friends, health workers, carers,neighbours, the media,. With this guide we are not going to change society, but we would want to make a contribution for professionals to be aware of the importance of their attitude
towards the sexuality of the person they have in front of them. To have sexuality
with the same status as the rest, a sexuality that doesn't need to be judged but
understood and considered. It is also important to focus our attention on the
compulsory respect of sexual diversity and different sexual orientations and
practices.
We believe that the educator's role involves answering questions, talking about sexuality, respecting privacy, offering suitable alternatives to certain behaviours.
To stop looking around as the only resource or offer silence as the only response. Furthermore, we think that it is important to share a minimum acting criteria.
We would desire to achieve a reasonably coherent environment. In this way, therewill be no contradictions among educators. This formula of coherence isachievable through debate, consensus and creation of working rules andregulations of certain services and resources which guarantee the sexuality ofpeople with disabilities. We want to educate and pay attention to every sexuality. Because of this, not only our words and actions are important but also the tone and gestures they are
accompanied by. We also educate with our attitude.
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It is indispensable that all men and women with disabilities feel recognized.
There is no better way that always taking their opinion into account, eventuallythey are the ones who decide. Even when their desires and interests are far fromthe professional point of view. The only existing limits are health and legal criteria.
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4.4. TALKING ABOUT SEXUALITY
The voice of the people disabilities must always be heard, also when they talk about their
sexuality, sex education and needs. They are the ones who must make the decisions.
From the professional point of view silence doesn't solve problems. We shouldalways talk about sexuality clearly and openly for people with disabilities toperceive our will to talk about this topic. It is not always necessary to wait fortheir questions. Both interests and needs must be met. As professionals we normally talk to them about many issues. Sometimes because we are asked, others because it emerges spontaneously and some othertimes because we think they need to know or to have at their disposal ways fordeveloping their sexuality. This is always true, no matter what type or grade ofdisability. Obviously, in each case, we should know how to adapt contents to make them understandable. This means taking into account their cognitive capacity, interestsand previous knowledge. Our proposal of how to talk about sexuality is identical to what we do with the
rest of the topics: talk about sexuality when being directly asked or when it
happens, but also when we think they need to know something about it. Bearing
in mind the cognitive capacity, interests and knowledge of the person in question.
There is no reason why all sexual matters should be surrounded by silence.
Nothing awakens because nothing was asleep. We also know that the knowledgewe want to provide about their body, their privacy, their genitals, men or women,is useful for understanding themselves and the world with surrounds them. A professional who works with people with disabilities is not an expert in sexology. However, to talk about sexuality there is no need to know everything.
You can answer ´I don't know . What is important is that they notice that we wantto talk to them and that we are glad they ask us questions. If there is something indispensable it is to show a good disposition. We insist, the aim is not only transmitting information. It is also our goal to treat them assexed persons who have the right to be interested in and be informed about theseissues. We want them to learn that they can count on us for these issues. Therefore, all words tones and gestures are important. We want them to feel they areanswered and it is not just a question that is being answered. We must care morefor the people than for the questions. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 85 GUIDELINES FOR PROFESSIONALS
Whenever possible a dialogue would be better than a monologue. Through dialogue we would try to start with their interests, and finish with their needs.
Joining what they want to know to what they need to know. Obviously, by
assuming that there are many people and many disabilities, there are also many
possibilities.
Imagine a boy or a girl who asks: How are children born? We could be satisfied by telling them that babies come out from the vagina or add something more theyneed to know: that they normally come out from the vagina but that sometimesbabies are taken out from the stomach. Another question: what are the consequences of masturbation? We could say what is apparently essential: masturbation bears no relation to puberty, fertility,masculinity. or taking the opportunity to tell more things they need to know, thatmasturbation has to be with pleasure and privacy, with men and women, and thatnobody is better or worse whether they practise it or not. Consequently, if we talk about coitus as a way of reaching pleasure, we should also talk about other forms of pleasure. If we talk about the functioning of thebody and the genitals it would be a good moment to remind them that neitherevery body nor every genital organ is exactly the same. In all cases, of course, when we talk about men and women we would remind them that all men and women are real. Because there is no need either to be equalnor to act in the same way. By answering their questions, curiosities are solved. By meeting their needs we get closer to our goals: that is, learning to know themselves, to accept themselvesand to live their eroticism in a pleasant way.
When there are no questions
We are interested in all people with disabilities. We want them all to learn about sexuality and to learn that they can speak with us. If we only speak withthose who ask, there will be even more people surrounded by silence. Our proposal is that they listen to us talking about issues related to sexuality, in the same way they hear us talking about other topics. With people with
disabilities we talk about the subjects they ask us, about their doubts, but we can
also talk about everything we consider important to be learnt by them. And,
evidently, many things about sexuality are important.
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The majority of them are completely aware of the fact that they are sexed and they are all interested in these issues. But at the same time, they feel that theirnearest environment avoids them. Therefore, it is difficult for them to start aconversation or ask questions. We think that it is urgent to talk to them about sexuality; they must perceive
that we treat them as men and women, as sexed persons, with their interests andcuriosities, but also with their peculiarities and possibilities. Conversations will be different according to the disability, the evolutionary moment and the cognitive capacity. But in all cases there will be conversations tobe held. When dealing with men and women with disabilities there is still a lack of
information. For instance: adult women who are completely unaware of the
existence of their clitoris and who, however, have the capacity to understand it, as
well as homosexuality, corporal development, the age of puberty, erection and
lubrication mechanisms.
Many of these gaps are explained by the difficulties to have access to information, but most of them are explained by all the silence which surroundssex education. By talking to them about sexuality, although not being asked, wewould avoid these situations from happening. On some occasions we would speak with them about the body, the genitals or the physiology. In others, about the identity and the orientation of their desire.
About how a person can be a man or a women in many different ways. We wouldtalk about relationships masturbation and pleasure too. Apart from many othertopics and each one with many nuances. It is easier to talk about sexuality with the person you heard talking about it.
Even more if he/she has done it positively. If the door has been opened to desiresand possibilities and if it is not limited to talking about dangers and problems. One aim is information. Another is that they have to learn that we consider
them to be sexed men and women with their interests and needs.
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4.5. RESPECTING PRIVACY AND INTIMACY
Everybody needs and has a right to their personal space and their privacy. We mustrespect the privacy asked for people with disabilities and, if needed, offer the possibility ofspaces and private moments. Besides, we should respect the decency and the intimatesecrets told to us. All persons need to have moments and private spaces. To read, to watch television, to dream, to relax, to tidy up photos, to masturbate, to draw, to think,to feel. Usually these spaces are within the house or, more exactly, in thebedroom or in the bathroom when living with other people, like in a residence. Disabled people have the same needs. Privacy is necessary to grow, to learn to be with yourself. We must respect their privacy. That is, we must learn to knock on doors before
entering. And this doesn't mean paying less attention or giving less protection.
Between all open doors and all closed doors there are many possibilities. Knocking before entering, leaving the door ajar instead of wide open, asking for permission, using folding screens to separate spaces. are all differentpossibilities which offer privacy without minimizing care and support needed.
And, above all, to be able to choose the type of accommodation in each case,through the supports needed. What is important is to believe that respecting and offering privacy, even when they aren't asked for, is part of the tasks of professionals who work with peoplewith disabilities.
When talking about personal relationships it is essential to have moments in which the person can show himself/herself naturally. Just as they are! Far from
prying eyes. Because of this, it is also necessary to have privacy: boys and girls
look for hidden places to play, the teenage couple hides behind the trees, and
adults choose the quietest table in the café.
This shared privacy is not only to have erotic relationships. In fact, most of the
time it is for other things: to talk without being heard, to look without being seen,to laugh, to cry, to share secrets, hobbies,. in short, to be able to show yourselfjust as you are without being constantly on alert. In the case of people with disabilities the need for a shared privacy is the same.
The only difference and, above all depending on the degree of disablement, it willbe a kind of privacy not reached by themselves. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 88 «Sexuality and women with disabilities: contributions, guidelines and good practices»
We should also facilitate this type of privacy: allowing the access of other people to their bedrooms, knowing when to leave, sitting down at separate
tables. In each case, we will find the best option which let allows to us combine
privacy with vigilance in situations where security and well-being may be at risk.
The most common error is to think that this kind of privacy is only needed in erotic relations, learning to know each other. We insist: respecting privacy is respecting the fact that they could grow naturally, just as they are, within their own spaces. Letting them masturbate orhave erotic relations is only a part of that respect. The naked body
The nude body is part of the person's privacy. As a consequence, nudity requires certain people and certain situations and it is always a personal decision.
So, it usually becomes uncomfortable when it is not like this. People with disabilities aren't an exception. And, although they don't specify their discomfort, their decency and their nudity, they deserve the sameconsideration as the rest. We should avoid the access of more people, apart fromthe strictly necessary, to the nude body of a person with disability. Logically, thesesituations are more frequent with the people who need more support for personalcleanliness, for getting dressed,. Our task consists of waiting until the person is changed, asking for permission and giving explanations if we aren't the person who usually helps him/her,avoiding indiscreet looks or comments.
Actually, the task is to treat equally their nudity and ours. Nowadays like adults and in the past like teenagers. Nothing else.
The intimacy of words
We must respect everything they say confidentially. We should know how to keep a secret, without talking about it, unless specifically authorized. Even if we try to meet their demands, for instance, shared intimacy. In these cases our job is to offer to help. ´If you authorize me. , ´If you want me to talkto your family.
Exceptions are when the person who trusts you is legally incapable or when the confidence refers to illegal situations. In both cases we should be sensible,choosing wisely the person with whom we share the confidence. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 89 GUIDELINES FOR PROFESSIONALS
From our colleagues we only know what we see and what we are told. We don't
need to know anything else to talk to them about sexuality or to respect their
privacy.
Both private life and information about sexuality are necessary for the person who has a lot of desires, interests and erotic conducts as well as for the one whohas none. For example, to talk to them about masturbation it is not essential toknow if they have or would want to have erotic relationships.
Paying attention to all sexualities is also this: only let them tell you what they want to tell you and what is vital, which, honestly, is not very much.
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4.6. SERVICES ORGANIZATION
It is important that institutions guarantee the right to privacy for everyone; this right mustbe especially considered and guaranteed in a special way in those disabilities whereautonomy is limited. Normalization and self determination must be promoted. Professionals who work on the rehabilitation of people with disabilities have a fundamentalrole to alert and demand organizations and administrations that manage the serviceswhich favour the appropriate respect to the right of sexuality and personal needs. The first premise is to consider that they have the right to choose where to live, like any other person; on their own, with their couple, with friends, in thecountryside or in the city. How many people would choose a residence with turnsto eat, time limits, without the choice of coexisting with the people you want? Inmany cases, we are talking about definitive housing for the rest of their lives. It seems clear that services must create environments which normalize their lives. Collective accommodation is not a suitable environment for normalizationand integration, because it generates highly strict regulations where the collectivewell being takes precedence over the individual one. In these contexts the right tosexuality is very limited.
However, these centres are still working and, in some contexts, they can be the only possible solution. Therefore, these institutions should organize and adapttheir services to create conditions through which people with disabilitiesexperiment the normal respect to which every person has a right. For example,privacy. The right to privacy is a fundamental right recognized by the World health Organisation for everyone. This right affects sexuality, although it is not exclusiveto these issues. We know that the different expressions of the erotic are considered appropriate when they are produced in the appropriate place and moment.
Therefore, it seems reasonable to have spaces of privacy to perform actions in asuitable way. In an organization where many people live, where spaces and times are organized, it must be considered an important topic. In the bathrooms, in thebedrooms, in the common areas, who must come in and under whichcircumstances, when someone must wait, the use of the folding screens,. We want people with disabilities to achieve as much self-determination as
possible. Therefore, environmental conditions should be created in order to
develop this capacity: to achieve the respect and dignity they deserve. Obviously,
as far as possible, before organizing the spaces, opinions and suggestions will be
taken into account.
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4.7. INADEQUATE CONDUCTS
We must have common guidelines to act when there is inadequate conduct which isdetrimental to the image of the person with disability, or which generates non desiredeffects on themselves and the people in their environment and which, all in all, don'tincrease their quality of life. These guidelines must transmit coherence among allprofessionals and must favour the fact that every person could express his/her sexuality inan appropriate and satisfying way. In some centres, mainly in those for intellectual disability, or within the family or social frame we sometimes find inadequate situations in which we must
obviously intervene. The aim is that the expressions of eroticism would happen in
a way that can be satisfying and without generating negative effects on the
environment and their main characters. Here are some examples of inadequate
behaviours
• Masturbation in public
• Couple molestation
• Sexual abuses
The attitude that accompanies the intervention is as important as the mere
intervention. It gives significance to the guidelines. In some occasions it wouldclearly be an attitude of rejection, like in sexual abuses. However, in others itwould be neutral. For example, in masturbation in public what seems inadequateto us isn't the conduct itself but the place or the moment in which it happens. This may seem an aspect, but it is an important aspect. The main question is to take these conducts towards an intimate area or towards a prohibited one.
When a conduct is inadequate there are no recipes. Not all boys or girls, men or women are equal, and so the ways of acting must be adjusted to thecharacteristics of each one and his/her environment. To their disability, theirevolutionary moment. As a consequence, our proposals are only a mereapproximation. Real life is always peculiar and full of nuances. • Masturbation in public
Our aim is to show masturbation in an adequate way, therefore it is vital to have a proper frame work. For example: the bedroom or the bathroom. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 92 «Sexuality and women with disabilities: contributions, guidelines and good practices»
The keys are simple: pointing out the inadequate, ´don't do this here, don't do it now. and offering alternatives, ´when you are alone, in your bedroom, in thebathroom,. Normally these phrases, or similar ones, are enough, though,naturally, we would have to say it more than once. We don't want to punish, wejust want to tell them what the appropriate conduct in each situation is. When the disabled person doesn't appear to understand the message, we must go little by little. First learning ´where and then ´when . Sometimes, tomotivate these learning periods it will be necessary to take them to the bathroomwhen the situation appears and so they can start to associate one thing with theother. If it is not possible to take him/her to the bathroom or to the bedroom it isadvisable to remove ´the public , by using a folding screen or turning him/herround. We think that it is better to offer some kind of privacy, with the foldingscreen for example. Once he/she has learnt which is the appropriate place it will be time to start the training. The aim now is to learn how to delay the impulse. This time it isn'tnecessary to take him/her to the bathroom immediately. On the contrary, wewould try to teach him/her to wait, always step by step. The topic of masturbation must be dealt with all the people with disabilities, and not only with those who show an inadequate conduct. Obviously, payingattention to their capacities. But they all need to know their body, their genitalsand their physiology of pleasure. They also need to know that there are men andwomen who masturbate and others who don't and that, in any case, theappropriate context is that of privacy. From this point on the decision is theirs. • Couple molestation
We should only try to eliminate couple molestation considered to be inappropriate. This is difficult to define. We know that couples can kiss, hug orstroke each other, and this isn't inadequate, it can even be pretty. But there couldbe inappropriate kisses, hugs or caresses, depending on the cultural contextwhere it takes place and personal preferences. Stroking the breast, the genitals, under the clothes. Considering these behaviours, we have to intervene. Not because the conduct itself is bad, but
because the moment and the place are inadequate. This is important; the aim is
to eliminate inappropriate behaviours, not love demonstrations.
When this conduct happens between persons capable of understanding what they are doing, the guideline must point to the inappropriate. Both because thisconduct is not socially permitted in public and because the rules of the centre arethe ones who don't allow it. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 93 GUIDELINES FOR PROFESSIONALS
In order to achieve this we should be able to offer an alternative. Generally, the
bedroom. If this conduct happens at home or in a residence, it would beconsidered the access to these encounters, because probably the person cannotchoose other alternatives. When the molestation is between people of the same sex, our attitude must be similar to that one of a heterosexual couple. We will allow the possibility toshow affection and therefore we´ll indicate inadecuate behabiour if and when ithappens.
The only difference is that sometimes you have to work with the whole group, the rest of men and women with disabilities. Remember not to penalize the maincharacters or make them be the butt of everyone's jokes. Homophobic attitudesand behaviours can also appear. We shouldn't wait for this to happen to work onthe diversity of sexual orientation. • Sexual abuses among fellows
When talking about this conduct there is no choice, we must eliminate it.
Therefore, the attitude or the tone must be of rejection.
As professionals we can find ourselves facing the abuses in two positions: being witnesses of the action or being the receivers of the confidence. In any case,
we must not forget our aims: if it is happening it must stop, and if it has already
happened it cannot happen again. Furthermore, and above all, our actions must
be directed to ´repair the damage .
Like with the rest of conducts it will be important to bear in mind the context: what is happening, who is taking part, up to what point they are aware of what ishappening, whether there are witnesses or not. and then act. If we are witnesses
The first thing to do is to ´separate the subjects immediately . Then, the priority is to ´receive the person we consider to be the victim, mainly if we noticehe/she is suffering. And ´receive means mainly listening to him/her and givingour support, letting him/her cry, talk, or remain silent. It is not the moment to askor explain anything. Later on we must continue showing our support. We must let him/her talk about the fact, being sure that our attitude towards him/her has not changed, andthat we don't consider him/her guilty. This situation must be reported to whomit may concern. and there he/she will be asked. That is why our task is to listen.
We think that it isn't good to repeat these kinds of questions. The best thing todo is to answer only when necessary. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 94 «Sexuality and women with disabilities: contributions, guidelines and good practices»
Our attitude when facing the person who abuses will be different. Trying not to be out of control, we must show rejection. Then, and depending on the context,we must talk about rules, punishments, respect, limits, and our obligation toinform the person in charge. If we are confidants
We have to guarantee that this is not going to happen again and, above all, we should try to show our concern. That he/she can rely on us. This means notsaying phrases like ´why haven't you told me before ´you should have shouted . Because these phrases would make him/her feel guilty. Our aim is to repair the damage, what is important now is that he/she feels he/she can rely on us. Then, we would have time to ask. We must listen towhatever they want to tell us. With their complicity, we could inform about thissituation. We must continue being approachable during the whole process. Each professional must play his/her role, without blocking each other. The
most qualified person must be in charge of giving coherence to the rest of theinterventions, and giving back the information to the professionals involved. In allcases respecting privacy and confidentiality. To prevent and detect situations of abuse
Women with disabilities are more frequently the victims of sexual abuses, which will imply measures that allow them to increase their capacity of facing thistype of situations; learning affirmative conducts ´saying no , knowledge andprocedures, to be able to recognise and report these situations. Knowing how to talk about sexuality and having a person to rely on is the best guarantee to make sexual abuses come to light. On the other hand, when talkingabout sex is taboo, it will be difficult to find the right moment or the appropriateperson. Learning to distinguish between the adequate behaviours of your body, and your nudity is also a guarantee that situations of abuse will not be allowed andwill be detected. The best prevention is Sex Education. Sex Education with wide aims and for each sexuality. A Sex Education which requires both professionals and family. • Other inappropriate situations
Sexual molestation to a professional, an outrageous use of words or obscene gestures, lack of decency or nudity in public. These are some examples of LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 95 GUIDELINES FOR PROFESSIONALS
situations we may have to face. If we notice something inappropriate we mustaddress it. Silence has never worked when learning to talk about sexuality. Besides, we will not educate if, instead of intervention, we turn away. We must be able to recognize the molestation or kisses that are irritating or inadequate, the gestures or words that are obscene and the nudity or lack ofdecency that seems inappropriate. We should try to offer alternatives andmaintain a coherent attitude. Not only do we want to eliminate the inadequate aspect of this conduct, but we also want the person to think that we care and enjoy his/her confidence. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 96 «Sexuality and women with disabilities: contributions, guidelines and good practices»
4.8. PERSONAL IMAGE
All persons express their personality through their personal image. Intellectual disability,mental disability or dependence on others to go to the toilet or to get dressed cannot leavethe person without his/her own image, or with a permanent childish image. Parallel to the acceptance and respect towards the diversity of sexualities and their waysof expression, we have to work so that people with disabilities reach the highest possibleintegration in their own context. Women and men too, must have support which enablesthem to have a positive personal image. Men and women with disabilities, also have a personality, shown through their personal image. This is true at all ages. Generally, it costs nothing to involve people with disabilities in their image; we just have to ask" How do you want me to brush your hair?"" What blouse do youwant to wear today?" "Which necklace?" . Difficulties in getting dressed shouldnot mean difficulties in choosing clothes or expressing their personality throughthem. Common sense will tell us about our advice and their preferences. And so, everything is compatible. When the person has no capacity to decide, we should try to find indicators to know what they prefer: clothes, hair, accessories . and, in any case, we will notforget that if they are boys or girls we must dress them like boys or girls. However,there is no reason to dress them like children when they are not children. Theyhave to be dressed according to their evolutionary moment. And their personalimage must reflect this. We see image stereotypes and models of how men and women are supposed to look. Stereotypes are nearly always restrictive and they don't include allpossibilities. The task consists of reinforcing their own image and transmittingcertain stereotypes or models. Everyone is different and this must be shown. The pressure exerted by society for women to be desirable, makes the work on personal image much more necessary for women than for men, because they arethe ones, to a large extent, who will feel far from the ideal models. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 97 GUIDELINES FOR PROFESSIONALS
4.9. SOCIAL STEREOTYPES
Social stereotypes in reference to disability, especially in the case of women, reducessexuality, making it nearly invisible. Society makes some sexualities more important thanothers. Our task is just the opposite. We treat all sexualities equally. Therefore, we have to work with people with disabilities, but also with the rest of society,to promote more inclusive models of sexuality, where diversity turns into a value. Every sexuality is full of stereotypes. In fact, the main stereotype related to the sexuality ofpeople with disabilities is thinking that their sexuality doesn't exist, or is not important. This guide tries to combat these stereotypes. People with disabilities are not asexual angels or devils. They are sexed persons, like the rest. Our task consists of taking sexuality to the whole body and not only to genitals.
Talking about procreation, but also about communication and pleasure. Takingmarriage as an option jointly with other models of coexistence and not as anobjective. We must try to pay attention to all sexualities. Men and women. Heterosexuals and homosexuals without establishing a hierarchy. We know that stereotypes are always unfair. That is why we need to learn to work with men and women who are different.
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4.10 CONTRACEPTION AND MOTHERHOOD
People with disabilities have rights to choose the possibility of being parents; this aspectobtains a special significance when it is a disabled woman who wants to become amother. Professionals must facilitate information for those who freely want to usemethods of contraception which, apart from avoiding unwanted pregnancies, preventdiseases. We must also facilitate the access to resources. Both for the person who searchesfor a method of contraception and for the person who needs help to become pregnant. The majority of people with disabilities keep their reproductive capacity intact.
Although in the case of bone-marrow damage they normally need techniques ofassisted reproduction, both for the sperm extraction and the followingfertilization. Furthermore, if the injured woman is the one who is pregnant, shemust receive special care from the very first moment until labour. We must be capable of talking about motherhood and fatherhood. In the same way, we must help those people who desire to have children and have the capacityto accept this new situation. For example, facilitating a contact with otherprofessionals who might solve their difficulties in becoming pregnant. We must always talk about contraception. We have already mentioned that, on some occasions, people with disabilities don't receive enough information aboutsexuality. And this lack of information can lead them to be at risk. If we want toreduce unwanted pregnancies and sexually transmitted diseases we must givethem the tools: information and access to contraceptive methods and theprevention of diseases. We should be able to advise on methods of contraception, based upon the relationship and the persons. But in all cases, we must outline the importance ofthe participation of both, men and women. They should know the method theyare going to use, how it works and how can it fail. It needs to be a method whichgives them autonomy. Except in some special cases, we cannot agree that a method is being offered to a woman without her permission. In very extreme conditions this decision,which is normally taken by the person with disabilities, can be taken by their tutor,on the grounds of legal incapacity. In what refers to the definitive contraception our statements are similar. It can be an option freely chosen by the man or woman through decision-making. Or itcan be a resort in cases of legal incapacity, of which their family or tutors takeadvantage. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 99 GUIDELINES FOR PROFESSIONALS
This is the reason why it is our task to transmit certain kinds of information about the different methods, facilitating the access to them and providingresources for those who need them. To achieve this aim we must know well whatresources are available and how they work. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 100 «Sexuality and women with disabilities: contributions, guidelines and good practices»
4.11. LEGAL CAPACITY AND ECONOMIC RESOURCES
It must be remembered that the legal capacity of people with disabilities must be recognised and guaranteed, and that support should be articulated for theexercise of this legal capacity when needed, also in those decisions related tosexual life, motherhood or contraception. In extreme cases when the decision-making is replaced (incapacitation, guardianship) a frame of protection towardsthe right to sexuality of every person must be guaranteed. All the support and resources which favour independence and personal autonomy are essential to promote normalization, also of sexuality. Manydifficulties have their origin in the lack of autonomy that is very frequentlyproduced by the lack of economical resources, by discrimination in the access totraining periods and employment, this way of discrimination is more intense inthe case of women with disabilities. Therefore, we must bear in mind this aspectwhen considering measures of positive discrimination which permit us to reachequal opportunities. Being legally capable, having economical resources or being employed reduces the dependence on others. They are then variables that allow the personhave more control over his/her life and over his/her sexual life. Facing the same circumstance: pornographic material possession, needing help to masturbate. our proceedings will be different whether there is legalcapacity or not. In the first case we must find a solution with the personconcerned. In the second we must include the family. Employment and economical resources also make it easier. Employment usually allows us to exist in a wider social network. And we know that the widerthe network, the more possibilities of having contacts of interaction, of learninghow to have contact with others, of feeling accepted and loved. Economicalresources allow the person to enjoy autonomy and independence better. Thepossibility of an autonomous life, our own house, specific support. Nevertheless, neither legal capacity nor employment and economical resources solve difficulties by themselves. It is still vital to have an appropriate sexeducation and an attitude which transmits our consideration towards them. Economical independence allows people with disabilities to enjoy sexuality in a more autonomous and independent way. The possibility of an independent life,their own house, precise support… less dependence on other people, leads to lessinterference to live their sexuality in first person.
In any case, neither legal capacity, employment, nor other resources, solve all the difficulties. A suitable sexual education continues to be an essential matterand an attitude from the rest transmitting our consideration to them.
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4.12. LEISURE AND REGULATIONS OF THE CENTRES AND ACCESS TO
NORMALIZED LEISURE AND FREE TIME
In order to socialize, in what refers to aspects related to sexuality it is vital to have leisuremoments and places (centres, parks.) where it is possible to learn how to interact withothers. Support and resources must be provided to make these interactions happen. It is helpful to be in contact with other people in standardized situations. A very difficult fact, if the world of people with disabilities is reduced to their familyand the place where he/she studies and where he or she sometimes lives. Theseinformal contexts of interaction are important during childhood, but also in youthand adulthood. Therefore it is our task to promote these kinds of events. If thefamilies or the Centres are very strict, shortages would be greater.
Of great importance are both leisure and protection. We should teach them how to enjoy leisure and be in contact with other people. We must give thempossibilities outside the centre and the family environment too. This is why we should try to combine complicity with the cooperation of the families, making them understand that it is vital to create that third space ofcontact. And at the same time the regulations of the centre must provide it byadapting timetables.
In leisure activities, if we want them to be effective in socializing, the person should be the main character. One thing is adding leisure times and another verydifferent one is directing them completely. Privacy and autonomy might also beprovided in leisure times. On the other hand, both professionals and societyshould learn to value positively the participation of people with disabilities inthese activities. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 102 «Sexuality and women with disabilities: contributions, guidelines and good practices»
4.13. WHEN A DISABILITY IS ACQUIRED
Reconstructing the sexual identity from an acquired disability requires time and supports.
You have to learn new keys and assume new roles. It is vital to work, in this case, withyour partner. The person with disabilities, no matter which disability he/she has builds his/her sexual identity jointly with his/her disability. However, when the disabilityis acquired things change. There is a past. The new reality is obstinate and it means that, probably, things cannot be seen as before. Technical help can be needed. One, perhaps, may not feel so desirableas before or he/she may have to change roles, from a more active to a morepassive one. These persons need informative, emotional and maybe therapeuticsupport to be able to assume that, despite the changes, the possibilities ofenjoying and being happy with the erotic still remain. Pleasure is not only coitusor erection. Pleasure is in everything that you enjoy, and the possibilities to enjoyare many. Our task consists of helping to look for the possibilities rather than for the difficulties.Technical help is a good resource to improve erections, coitus andgenital pleasure. As professionals we must know that this is all very important.
But sexual rehabilitation is more than that. What these people need now is to relearn what they should have learnt. That all sexualities are valid. The fact that coitus is not a goal, it is only a possibility andthat normal sexualities are all those allow us to that enjoy and feel satisfied. When there is a couple it is important to deal with this topic. Because he or she will also have to assume that, although things will never be the same again,they can still be pleasant. With or without help, but with desires. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 103 GUIDELINES FOR PROFESSIONALS
4.14. WE ALSO TALK WITH THE FAMILY
Especially when we talk about minors or young people with disabilities, we, theprofessionals and families, must collaborate and share objectives. We are both interestedin the same people. We, as professionals will try to communicate the keys we work withand reach a consensus on our idea of sexuality. There are no secrets. We must try to achieve that all those indications are well- known and shared by the families. We must talk to all families. We educate andpay attention to every sexuality and we educate and pay attention to all families.
The key to talking is the same. We must show a willingness to talk about the topic,meeting their demands. All in all, the same as for other topics, we want them tounderstand and become involved. We offer information about their child or theperson they are in charge of, to the families, gradually, talking about the differentprogresses: cognitive, of personal autonomy, in their relationships. withsexuality we must do the same. The aim is to avoid sexuality being surrounded by silence. For example, we must talk about masturbation with the families. They must know what to do andwhat it means. We have to talk before problems arise. We must deal with all the important issues with the families. From necessity
to privacy, they must learn that they own their bodies, which they deserve to beloved and accepted just as they are. The need of corporal contact, of mixing withother boys and girls, men and women in informal situations. Later on we will talkto them about shared privacy, identity, orientation, contraception, aboutcontinuing to offer them spaces where they can interact naturally. When the person grows older it is necessary to continue with the training and informing families, although we must respect the privacy of men or women withdisabilities. To work with the families they also need their time to accept thesexual needs of their children. In the reports for the families we must includesome phrases mentioning sexuality. The aim is to transmit the fact that we talkabout a sexed person and, therefore, with the need of being educated and takingcare of their sexuality in every context. A talk about sexuality is another strategy. We want families to collaborate with us and vice versa. We are interested in the
same boy or girl, in the same man or woman, and we know that if we all gotowards the same direction we will probably get further. This is also our job. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 104 «Sexuality and women with disabilities: contributions, guidelines and good practices»
4.15. GIVING VISIBILITY TO ALL SEXUALITIES
It is essential for integration, normalization and self-determination that society alsoaccepts the sexuality of the disabled. Starting from a model based on the diversity ofsexualities, the sexuality of the people with disabilities isn't something ´special anddifferent . It is as ´special and different as the sexuality of each person. Sexuality: with orwithout coitus, in or out of marriage, homosexual or heterosexual, with or withoutprocreation, of men or women. Because of this it isn't enough to work within the nearestenvironment. We must try to make visible these sexualities to a society which has fearsand hides the sexuality of people with disabilities, and in a more intense way the sexualityof women with disabilities. This document tries to achieve the commitment of Educating and Taking care of the sexuality of people with disabilities. Trying to involve their families. But, toachieve normalization in this aspect, it is necessary for them to be accepted bythe rest of the society. It is essential to talk about their sexuality in sex education lessons given in schools and high schools, like a normal reality. It has to appear in books aboutsexuality; in TV programmes . It has to be included with the rest of sexualities.
All sexualities are unique, but they all deal with the same keys: bodies, desires,possibilities. Undoubtedly, this society needs to know that the sexualities of the people with disabilities, especially the sexuality of women with disabilities exist, and they mustenjoy the same legitimacy and have the same possibilities as the rest. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 105 GUIDELINES FOR PROFESSIONALS
4.16. SOME CONCLUSIONS
As professionals we can highlight some guidelines from the above mentioned ideas, in order to carry them out in our daily work (about training, personalassistance, rehabilitation, management services, etc). We must try to be coherentwith them and to take them in to consideration in professional practice. Theseguidelines, as main conclusions of the manual, are: • To be sure (and work on it) that people with disabilities decide in every aspect related to their sexuality. • To provide sexual education with conceptual, attitudinal and procedural contents, allowing them to take those decisions in a free way. • To promote (especially) the visibility of sexuality of women with disabilities, generally even more silenced. • To recognize the rights of people with disabilities to organize their own sexual life, giving them the needed tools and avoiding taking decisions intheir place. • To take into account, when the circumstances require it, of the legal families or tutors, within the existing legal framework, making decisions in acoordinated way. • To support tutors and parents in the consideration and respect of the sexual needs of people with disabilities. • To have as one of our objectives the spread of information on the different sexuality aspects or functions: such enjoyment and pleasure,communication and relationships, and procreation. • To offer opportunities to have contact with others in normalized situations, in interaction with people different to relatives', or people with disabilitiesfrom specific services. • To offer, to promote and to guarantee private times and spaces.
• To foster in their leisure time, the possibility of pleasure in an autonomous and private way. • To limit the access to their bodies only to authorized and indispensable • When inappropriate sexual conducts are produced, these should be removed and replaced by others more appropriate and satisfying for theperson with disabilities and his/her environment. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 106 «Sexuality and women with disabilities: contributions, guidelines and good practices»
• To teach interpersonal abilities and, depending on the case, languages and ways of communication which allow to them mix with the others. • To strengthen self-esteem, and facilitate the expression of their personality through their personal image as well as contributing to the elimination ofstereotypes. • To offer diverse eroticism, allowing the search for pleasant ways of interaction between people with disabilities and their partners. • To offer information about fertilization and contraceptive methods, as well as to facilitate access to resources and the different contraceptive methods. • To offer information and support for the option of maternity, and, in its case, to facilitate the access to assisted reproduction techniques. • To offer resources and professional help in case of difficulties with sexual response, sphincter control, loss of sensitivity, limited mobility… • To facilitate the coordinated work among all professionals that are a reference for people with disabilities, offering coherent support andintervention. • To work, when necessary, in collaboration and coordination with the • To promote and to facilitate to the utmost, personal autonomy and integration, as well as facilitate the needed support to reduce dependence • To organize the Services for all the above mentioned to be possible.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 107 (A brief guide to get by)
By Carlos de la Cruz -AEPS – (Spain) and Teresa OrihuelaFundación INTRAS- (Spain) 5.1. STARTING POINT
Every person has the right to receive sex education and have suitable conditions that enable them to enjoy their own sexual life. This is also the case forthe disabled. Each stakeholder should contribute to educate and, as far aspossible, facilitate these conditions. Every sex education must be included in theframework of normalization and self-determination. 5.2. SEX EDUCATION AIMS
Sex education aims to provide the knowledge, procedures and attitudes which help in the fact that every person is sexed. These goals must allow us to work withevery person, and not only with those who are at risk. Therefore, they would learnto know themselves, to accept themselves and to express their erotic in a pleasantway improving their quality of life. Sex education is not only risk prevention. 5.3. PROFESSIONALS ATTITUDE
It is necessary for stakeholders to be aware of the fact that it is possible to educate and have the belief that all together must offer a coherent environment LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 108 «Sexuality and women with disabilities: contributions, guidelines and good practices»
without contradictions. Attitudes must always be tolerant and show respect tosexual diversity: both with different orientations and sexual practises. It isessential to train professionals who work with people with disabilities in this field,it is necessary to include disciplines and knowledge based on the sexologicalscience in the professionals training programmes, which train professionalsbeing capable of transmitting attitudes, knowledge, and procedures which allowa positive work of the sexuality. 5.4. TALKING ABOUT SEXUALITY
The voice of the people with disabilities must always be heard, also when they talk about their sexuality, sex education and needs. They are the ones who must
make the decisions.
Silence doesn't solve problems. We should always talk about sexuality clearly and openly for them to perceive our will to talk about this topic. It is not alwaysnecessary to wait for their questions. Both interests and needs must be met. 5.5. RESPECTING PRIVACY AND INTIMACY
Some persons need and everybody has rights to their personal spaces and their privacy. We must respect the privacy asked by the people with disabilitiesand, if needed, offer the possibility of spaces and private moments. Besides, weshould respect the decency and the intimate secrets told to us.
5.6. SERVICES ORGANIZATION
It is important that the institutions guarantee the right to privacy for everyone; this right must be especially considered and guaranteed in a special way in thosedisabilities where the autonomy is limited. Normalization and self determinationmust be promoted. Professionals who work on the rehabilitation of people with disabilities have a fundamental role to alert and demand organizations and administrations thatmanage the services which favour the appropriate respect to the right of sexualityand the personal needs. LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 109 RECOMMENDATIONS FOR SKATEHOLDERS (A brief guide to get by)
5.7. INADEQUATE CONDUCTS
We must have common guidelines to act when there is an inadequate conduct which is detrimental to the image of the people with disabilities or whichgenerates non desired effects on themselves and the people in their environmentand who, all in all, don't increase their quality of life. These guidelines musttransmit coherence among all professionals and must favour the fact that theperson could express his/her sexuality in an appropriate and satisfying way.
5.8. PERSONAL IMAGE
All persons express their personality through their personal image. The intellectual disability, the mental disability or the dependence of others to go tothe toilet or to get dressed cannot leave the person without his/her own image orwith a permanent childish image. Parallel to the acceptance and respect towards the diversity of sexualities and their ways of expression, we have to work for them to reach the major integrationpossible in their own context. Women and men too, must have supports whichenable them to have a positive personal image. 5.9. SOCIAL STEREOTYPES
Social stereotypes in what refers to disability, especially in the case of women reduce sexuality, making it nearly invisible. Society makes some sexualities moreimportant than others. Our task is just the opposite. We try all sexualities equally. Therefore we have to work with the disabled but also with the rest of the society, to promote more inclusive models of sexuality, where diversity turns intoa value. 5.10. CONTRACEPTION AND MOTHERHOOD
People with disabilities have rights to choose the possibility of being parents; this aspect obtains a special significance when it is a disabled woman who wantsto become a mother. Professionals must facilitate information for them who freely want to use methods of contraception which apart from avoiding unwanted pregnancies, LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 110 «Sexuality and women with disabilities: contributions, guidelines and good practices»
prevent from diseases. We must also facilitate the access to resources. Both forthe person who searches for a method of contraception and for the person whoneeds help to become pregnant.
5.11. LEGAL CAPACITY AND ECONOMIC RESOURCES
It must be remembered that the legal capacity of people with disabilities should be recognized and guaranteed, and that supports should be articulated inorder to practise this capacity when necessary, also in those decisions related tosex life, maternity or contraception. In extreme cases when the capacity ofdecision is replaced (incapacitation, guardianship) it should be guaranteed aframework of protection towards the right to sexuality of every person. All supports and resources which help independence and personal autonomy are vital when favouring normalization, also about sexuality. Many difficultieshave their origin in the lack of autonomy that very frequently appears because ofthe lack of economic resources by discrimination in the access to training andemployment, this discrimination is more intense in women with disabilities.
Therefore, it will be taken into account this aspect when talking about theconsideration of positive discrimination measures which help to reach equalopportunity.
5. 12. REGULATIONS OF THE CENTRES AND ACCESS TO NORMALIZED
LEISURE AND FREE TIME
In order to socialize, in what refers to aspects related to sexuality it is vital to have leisure moments and places (centres, parks.) where it is possible to learnhow to interact with others. Supports and resources must be provided to makethese interactions happen. 5.13. WHEN A DISABILITY IS ACQUIRED
Reconstructing sexual identity from an acquired disability requires time and supports. New keys have to be learnt and new roles assumed. It becomesessential working also, in this case, with the partner. 5.14. WE ALSO TALK WITH THE FAMILY
Especially when we talk about minors or legally people with disabilities, we, professionals and relatives, must try to collaborate and share these aims. We, LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 111 RECOMMENDATIONS FOR SKATEHOLDERS (A brief guide to get by)
professionals and families are interested in the same persons. For our part, wewould try to communicate the keys we work with and reach a consensus on ouridea of sexuality. 5.15. GIVE VISIBILITY TO ALL SEXUALITIES
It is essential for the integration, normalization and self-determination that society also accepts the sexuality of the disabled. Starting from a model based onthe diversity of sexualities, the sexuality of the people with disabilities isn´tsomething ´special and different . It is as ´special and different as the sexualityof each person. Sexuality: with or without coitus, in or out of marriage,homosexual or heterosexual, with or without procreation, of men or women.
Because of that it isn´t. enough to work within the nearest environment. We musttry to make visible these sexualities to a society which has fears and hides thesexuality of the people with disabilities, and in a more intense way the sexuality ofwomen with disabilities. 5.16. SOME CONCLUSIONS
From all the above mentioned emerge some lines of actions as stakeholders.
We must try to be consistent with them and take them into account in theprofessional practise.
LIBRO SEXUALITY AND WOMEN 18/3/07 10:18 Página 112

Source: http://www.epnu.ee/site/data/ef0ad55f73276909e286d73285feefebdde708bbSexualityWomen.disability.Manual.pdf