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An introduction to the SEAD Word Bank
> by: Irén Lovas, MGMA (Hungary)

“…I was afraid, I was really worried what would happen with me in that room, what I would have to do there, what I would be ABLE to do, what the girl expects me to do, how my body would react to what I already have in my head?” 1

The prospect of a ‘complete life’ for disabled people is often drawn up in the objectives disability institutions. This includes education for independent living. The question is ‘What is complete life?’. In the answers we find work, sport, access to culture, rarely also the family. But there is nothing about how to have a family, the selection of partner, dating and sexuality.

Why is the silence?
When a child is born with disabilities, the time of parents and the experts is very much taken up with their improvement, the reduction of the degree of impairment. So they tend to forget about the importance of relationships, attitudes and behaviours. While another four-year-old child may play with a doll and give a hug to her father in her little skirt, a disabled child mostly gets improving toys. But they may not have time to play with them because of the frequent improvement sessions they have to attend.
For some disabled teenagers, sixteen years of her or his life have passed, without somebody talking to her or him about relationships and sexuality. Parents and teachers often assume that they won’t have relationships, saying, ‘Who would want to live with a disabled person?’.

It is easier to look at people who were born with a disability as sexless individuals, because this way it is more practical to plan their lives, plan their nursing, their rehabilitation and face the hardships. The prevailing opinion is that sexuality is owned by the ‘intact’ people, they have right to it and this is their reward. Today we know: Every individual has sexuality; the suppression of this can lead to severe personality disorder. Sexuality belongs to everyone: people with disability as well as intact people. The keyword is acceptance: to recognize and accept that disabled people are sexual beings both in the family and society.

“We have to approach the sexuality of the disabled from the point of view of the human, not the point of view of the Disability. Sexuality is not a medical, psychological or rehabilitation question, but it is a question of love, intimacy, trust, and the most inner individual part of personality defined by the dimension of togetherness.” 2

The responsibility of the professionals is to gather and share information willingly in an understandable way, while keeping the family’s values in mind.

1 Zsófia Kálmán – György Könczei, 2002. A taigetosztól az esélyegyenlőségig 461. p.
(From Taigetos to equal opportunity)
2 Zsófia Kálmán – György Könczei, 2002. A taigetosztól az esélyegyenlőségig 445. p.
(From Taigetos to equal opportunity)

The following Word Bank was compiled as a practical tool to overcome the silence. Click on the button below to download the Word Bank.

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This project has been funded with support from the European Commission. This communication reflects the views only of the author, and the Commission cannot be held responsible for any use which may be made of the information contained therein.