Friday, August 21, 2009

The Last Frontier

Do people with disability have sex lives? Do people with intellectual disabilities have the right to reproduce and raise their own babies? What kind of sex education do children with disability need?

Of all the issues confronting people with disability and those who work with them, none is as highly charged as the issue of sexuality. A case which hit the newspapers a few weeks ago brought many of the most compelling strands of this complex tapestry together at a national level and it took the Supreme Court to finally settle one crucial aspect.

The case involved a young woman with a mental handicap. She lived in a government run institution as a ward of the state and she had been raped repeatedly by two guards working there. Finally, at the age of 19, she became pregnant. The State, discovering her condition some 18 weeks into the pregnancy, determined that she should have an abortion. The young woman, however, insisted that she wanted to keep the child.

Her “guardian” (the State) took the matter to court and it was decided that she should be compelled to have the abortion. An advocate for the woman filed an appeal against the judgment in the Supreme Court where, given the urgency of the issue (abortion is illegal after 20 weeks) a speedy verdict was handed down: any woman, even one with a mental handicap, has the right to bear a child and cannot be compelled to abort it against her will.

Many people weighed in on this case during the debate and while many revealing things were said, much was also ignored, brushed under the carpet or simply not analysed. Let’s look at some of them:

A disabled woman was raped (by two men supposedly there to protect her). People with mental handicaps are statistically more likely to be sexually abused than almost any other group. This is true for a number of reasons. They are often accustomed to being both dependent on adults for many of their basic personal needs and submissive in their response to those adults, particularly those seen as authority figures.

People with developmental disabilities may also lack the social skills required to assess a potentially dangerous situation and the judgment and maturity to get out of it or raise an alarm. And finally, they are exposed to many more “caregivers” than typically developing people. The more people one is intimately involved with, the higher the chance that one of them will be an exploiter.

The woman became pregnant. People with developmental disability are often assumed to be infertile. While some disabilities do have an associated infertility component (only around 50% of women with Down Syndrome, for example, are fertile), most otherwise healthy adults have the same chance of being able to reproduce as anyone.

Her pregnancy was ordered to be terminated by the High Court in her state, in spite of her repeated insistence that she wanted to have the baby. Here we get to the heart of many issues. Is a person with an intellectual disability capable of making such a decision? Is intellectual capacity a requirement for parenthood? What about the baby’s right to life? Is the state ever justified in forcing a person to undergo an invasive procedure, particularly one which many believe to be murder?

Many people who agreed with the Supreme Court’s decision nonetheless felt strongly that the baby would still have to be taken away from the mother and reared by the State. It’s important to look carefully at the biases and assumptions at work here.

Are we so sure that a woman with a cognitive disability is incapable of taking care of her own child? Not knowing the individual woman personally, I cannot say for certain, but in theory there is no reason to assume she couldn’t manage, albeit with support. (Most completely able women, by the way, admit that they couldn’t bring up their babies without support either.) Motherhood is a demanding and difficult task and having a high IQ may be one of the least important pre-requisites. Indeed, for many women, it’s their intelligence which gets in the way.

As long as the mother is loving and attentive, as many of the mentally handicapped women I know are, and, crucially, has support from family, friends or the community, a baby could prosper in her care.

That baby might not get the perfect intellectual environment and might not be an academic superstar as a result, but is academic success the only goal in life? Does it guarantee happiness? A child brought up by a mother with intellectual impairment might still be deeply loved and cared for and might have a satisfying and content life - not things to be lightly discarded.

In spite of such logic, many arguments were made, and continue to be made, about the State’s compelling interest in seeing that this child not be born. Because the mother was incompetent, it was said, the baby would necessarily have to be brought up by the State; therefore it would be better not to allow it to be born in the first place. Leaving aside the fact that the State had already demonstrated its own incompetence and shouldn’t have been criticizing the abilities of others, this is a specious and dangerous line of reasoning.

There are many people who do not presently come under the jurisdiction of the State as its wards, as the woman in question did, yet might still be judged incompetent to bring up children. The socialite more interested in fashion and parties than in a baby’s schedule and needs, the work-a-holic whose ambition supersedes her parenting responsibilities, the slow learner married to another slow learner, the habitual drinker or drug addict, the extremely poor woman living hand to mouth in a slum, the child bride, the illiterate, uneducated woman producing her fifth child in as many years - the list could go on and on.

Are we prepared to allow the State to order the pregnancies of such women to be terminated? The Supreme Court decided, correctly, that we aren’t. But it needs to be said again and again until it finally sinks in that human rights cannot be granted to some people and denied to others without creating the virtual certainty that eventually they will be taken away from everyone.
What if the baby were born with a disability, as many opponents of the Supreme Court decision hinted darkly was very likely to be the case?

What if it were? And here at last we arrive at the true heart of the matter. Disability is, I believe, “The Last Frontier” in the battle against discrimination and injustice. While people are indeed denied basic human rights for all sorts of reasons all over the world, no civilized person ever tries to justify it. When women are raped, when prisoners are tortured, when children are abused, when war crimes are committed, the civilized world recoils in horror. We speak out against human rights violations wherever we see them and so we should and so we must.

Except when it comes to people with disability.

Abortion of girls because they are girls is called what it is: murder, brutality, female feticide. Abortion of babies with disability, on the other hand, is routine, sanctioned and worse, even expected. In the United States, it is estimated that 95% of babies detected to have Down Syndrome are aborted. Women who elect to have their babies anyway are made to feel they are irresponsible, reckless and unfairly burdening society.

Eminent philosophers at prestigious universities (Dr Peter Singer at Princeton is just one example) now speak openly and persuasively of the moral and ethical right of parents not only to abort handicapped babies before they are born but afterwards as well. At the moment, he says, it is acceptable only in the early infancy stage, before the parents have formed an “attachment”. But as he himself admits, if it is acceptable to abort a disabled baby before birth, there should be no problem with doing it afterwards. This opens the door wide to chilling possibilities which even Adolph Hitler might find disturbing.

Sexuality offers a prism through which we can better understand ourselves, the people around us and the values we hold most dearly. When we use it to look at the experience of disability we may find, to our discomfort and dismay, that we are not quite the people we thought we were. Many of us find ourselves uncomfortable at the thought of people with disabilities making choices in their own lives, distressed with the idea of them having sexual relationships and - dare we admit it? - appalled by the vision of them bringing more people like themselves into the world.

The Last Frontier. And, again, it’s later than we think.

1 comment:

Adamaine said...

Wow!This whole issue opens up a can of worms. Having an 8 year old daughter with down syndrome i have to address this and related issues sooner or later.

Let's start with what I know and understand. People with down syndrome are surrounded by myths. One of them being they are eternal children with benign dispositions. This is not so. Children with down syndrome grow into teenagers/adults with the same raging hormones and needs typical teenagers/adults have.

Unfortunately I have questions rather than answers: Has the person with down syndrome/or other disability been properly and sufficiently educated in the topics of how their bodies change as they grow, sex? Have they been provided with the opportunity to experiment and discover their bodies as have typical children? Have they been provided with opportunities to experience sex in a safe environment with their intellectual peers?

Perhaps attention to the above would/could be a prevention, even in part, to the arising of the incident you describe?