Sexuality Is Our Basic Human Right – By Katie F. Ball
From: Women and Disability – An Issue. A Collection of writings by women with disabilities. This booklet was produced by the Melbourne based Women with Disabilities Feminist Collective in the late 1980’s. The exact publishing date is unknown. Copyright.
Of the many issues faced by disabled women who are confined to institutional accommodation, I feel that sexuality is one of the most neglected. It is certainly an issue which most institutions prefer to sweep under the carpet.
There are virtually no facilities to cater for the needs of couples within adult residential institutions. Mostly sexuality is actually suppressed and sexual activity is forbidden. Persons who reside in institutions are being denied their basic human rights to freedom, privacy and sexuality.
For many severely disabled people, there is little or no real alternative to this type of environment. Our disabilities can prevent us from living independently in the community and our families are unwilling or unable to provide the care we need. So we are forced to live out our lives in the confines of an institution which provides long-term accommodation for disabled adults.
Many people become institutionalised at an early age and grow up to lead sheltered and restricted lives. This in itself creates a barrier to forming close relationships with others in the wider community and sets them at an even further social disadvantage. They become totally dependent on the institution for their emotional as well as physical needs and find it difficult to relate to others outside the institution. They come to see it as their home. Yet where else would a consenting adult be forbidden to conduct an intimate relationship in the privacy of his/her own bedroom?
These people have the right to lead full and meaningful lives. They have the right to privacy.
What happens when two people meet in an institutional setting and fall in love but are unable to express their feelings for each other because they both live under the scrutiny of authoritarian nursing staff? They are denied even the privacy to discuss their future, being forced to meet in a communal lounge or dining-room where staff and other residents are able to hear even the most whispered conversation. Or perhaps one partner is able-bodied and lives in the community but accessibility to his/her place makes a visit impossible. Also, he/she may not wish to take full responsibility for his/her partner’s attendant care needs, especially at the beginning of a relationship.
In fact, there are many cases where an individual has been denied the chance to live as full a life as possible, simply because he/she is forbidden to conduct a personal relationship in the sanctuary of his/her own “home”.
I have written to Directors of Residential Institutions in the past wanting to raise these issues. The replies have been not only unsatisfactory, but rude and offensive. One stated that people living in short-term respite care “do not need privacy and security”. He referred to residents of such institutional accommodation as living in “congregate care” which surely suggests that he sees us as cattle to be herded together and “treated” or otherwise dealt with. And while he admitted that no facilities exist at this institution, I have observed the way the rules differed depending on which staff members were on duty. Each sister makes the rules to suit her own morals and while there are a few very kind and understanding nurses, the majority are totalitarian figures of authority. Any resident participation in rule-setting, as claimed by the Director, is merely token value.
About a year ago, I had the opportunity to apply for a position in one of these places. When I asked to be shown around the building, I caught sight of a bold sign on the door leading to the dormitories which read “No Smoking Or Visitors Beyond This Door”. Another sign read “ALL VISITORS MUST DEPART BY 10PM”. Upon asking the reason for these unnecessary restrictions on personal freedom, I was told by the sister in charge, not to be so naive. When I pushed the issue further, she became angry and told me she would not have the place run “like a red-light district”. Needless to say, I refused to consider this a suitable accommodation option and am now living independently in the community using a local attendant care programme.
Having spent nine months within an institution in 1981 I am able to cite some of the injustices and denial of rights which I have witnessed. However, to protect the individuals involved, I will use false names. Jean lived in the dormitory next door to mine. She was going with her boyfriend, Simon, who lived in a separate part of the same institution and was sometimes permitted to go across the courtyard to visit him. One day, they were caught petting in a seldom-used back room and they were forbidden to see each other thereafter. They were both over the legal age of consent and were doing nothing wrong by normal social standards.
Soon after they broke up, Simon was caught engaging in sexual activity with Sue, who also lived there. Simon was immediately evicted and Sue was severely punished. In both cases, all parents were called in and the individuals were made to air their most intimate feelings and experiences for all to hear. The humiliation and degradation of such an experience may cause life-long emotional scars and form hang-ups which prevent future relationships from being formed.
Yet the administration of this same place chose to ignore two similar reports of a prominent male nurse who made advances towards and reportedly “played with” male residents of the institution. The nurse involved was merely transferred to another section and the whole episode was hushed up. I am only aware of the facts because I became close friends with another nurse who has since left the place. Apparently, three similar reports are required before legal action can be taken, and, as in this case, there were only two, nothing could be done. The two young men involved are powerless to prevent further torment. This kind of sexual harassment of both men and women is not uncommon but most of its victims are too afraid to report what actually goes on.
After having been involved with residential institutions and the Special School system, I am appalled at the lack of sex education provided by these places. So many young women reach adulthood with little or no knowledge about sex, contraception, pregnancy and childbirth. They grow up with no one to turn to for advice or factual information concerning their capabilities and limitations in these areas, and, I can tell you, this can be very frightening. It is especially important that disabled women should possess accurate information concerning sexual satisfaction, becoming pregnant and child bearing. I have known of cases where girls have been given the wrong information by cruel nursing staff and have spent years thinking they are incapable of having intercourse, much less bearing a child. It is vital that institutions provide their residents with information concerning not only the facts of life, but how each individual’s disability affects him/her in these areas and ways in which problems can be overcome, perhaps with the use of sex aids, or different expressions of sexuality.
There have been many cases where women and young girls have been forced to undergo sterilisation by the institutions in which they live. This is especially so in the case of intellectually disabled women who are unable to control their lives and who do not realise that they have a choice. This inhumane form of control has also been used on physically disabled women and is currently being forced on many women in institutions.
Institutional accommodation, such as I have described, actively denies individuals the right to be normal, healthy human beings. Sexuality is not just sexual intercourse. It is much, much more than just the physical act of having sex. Our sexuality is as much a part of us as our clothes-sense, our favourite foods and our personal style. Our need to love and be loved is as vital to our wellbeing as our need to eat, drink and breathe. To deny our sexuality is to deny that we are whole human beings.
It is high time that people controlling institutions realise that we are living in the twentieth century and that disabled people are no longer willing to sit back and have their morals dictated to them. In fact, sexuality within institutional accommodation should not even be an issue. Privacy and freedom are not privileges to be granted or taken away. They are our basic human rights. Just as people who run the institutions would not appreciate their own sex life to be regulated by a stranger, nor do we. What we do in our own rooms, and who we do it with, is not the business of staff, administration the milkman, or anyone else.