Human rights and potential in handicapped people

This article was published on the Guardian’s Comment is Free website on 8 January 2007.

Ashley’s parents may have been acting out of love and compassion, but they have denied her the opportunity to reach her full potential.

I once worked in a residential care home for men and women with severe mental handicap. Most members of this community had estimated cognitive abilities similar to that of your average toddler, yet they were still grown-ups, with at least some adult needs. They experienced passion, empathy, love and a whole range of other emotions, positive and negative, and this was plain for all to see. In some ways they were like small children, while in others they reflected their years.

Ashley, the nine year-old from Seattle whose story recently became international news, is now frozen into childhood, and may never experience things that most adults – including those with severe learning difficulties – take for granted. Out of the best of intentions, Ashley’s parents may be denying their daughter the opportunity to reach her potential as a human being, whatever that may be. They are surely acting out of love and compassion, but I cannot help thinking they have made a mistake.

There is a danger that if surgical and chemical intervention to prevent mentally handicapped persons from developing beyond childhood is accepted as the norm, we could deny those capable of experiencing some degree of complex emotion the opportunity to experience life to the full. There are serious ethical and human rights issues at stake here, and no simple answers. The debate should not be about what is most expedient in particular cases.

The specifics of Ashley’s condition are not relevant to the public discussion surrounding the broader issues. We don’t have all the facts, and it would not be right for the medical professionals involved with Ashley to go into detail in public. There is also some debate among experts about the nature of mental handicap, including the difficulty in assessing mental age and cognitive ability in those unable to communicate through speech and physical action.

I had great difficulty coming to terms with some of the issues thrown up by the work I was doing, and older and more experienced colleagues told me that they also lacked the emotional maturity to deal with it. But one thing we were all certain about was that the ability to love and communicate deeply is not restricted to those of normal IQ and above. We were working with adults whose severe mental handicaps were often compounded with physical impairment and mental illness. But they were still people.

My aim in discussing the matter here is to highlight certain ethical issues, and my concern about how precedent dictates ethical norms. I am not condemning either Ashley’s parents or the medical professionals involved in the child’s care, but we cannot ignore the wider implications of what has occurred in this particular case.

Ashley’s case was decided upon by her parents and a Seattle hospital ethics committee. On this side of the pond the courts would have to be involved, and this means is that the issues are aired among a far wider constituency than those directly involved with the individuals concerned.

In the published descriptions of Ashley’s cognitive abilities there are a few inconsistencies, and this is one of the reasons I could never take on trust a categorical statement that a nine year-old child unable to talk has the mental capacity of a three month-old baby. Assessing cognitive abilities in such circumstances is not easy, and there is no expert consensus on this.

Do we impose a legal cutoff in such cases – i.e., is it acceptable to perform invasive procedures on handicapped children with a mental age of, say, two years and below, but not those with more advanced development? If so, why? Why not five years, or six months? How do we decide the cutoff point, or account for the uncertainty in mental age?

There is no reason why an individual like Ashley, left to develop without drastic intervention, cannot lead a comfortable and happy life if provided with adequate healthcare and social support. There are practical issues of importance here, such as who pays for the care of the severely handicapped, and the level of support available to parents who do not qualify for aid through either a socialised healthcare system or private medical insurance.

Consider Ashley’s individual case if you will (and can, adequately, given the limited amount of information available), but think also about the moral and ethical implications of the case for handicapped people as a whole. Right or wrong, in law, the particular becomes the general, and could easily do so as regards the acceptability of the kind of procedures carried out on Ashley.

British medical and legal experts who commented on Ashley’s case raised this as a major concern, and they were absolutely right to do so. I have worked with psychiatrists and others who have had to make decisions about individual human beings that have huge ethical implications, and all I can say is rather them than me.

We must not rush to condemn those who make decisions our instincts may lead us to think are inhuman or do not go far enough. Rather, we should look beyond the specifics of particular cases, and our compassion toward those directly involved, and think about the wider implications of decisions affecting those who cannot decide for themselves.