Disability rights and wrongs
By Mark Woods (*)
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To a casual thinker, if someone is blind, or has lost a limb, or has cerebral palsy, it's only humane to want to fix it, and if it can't be fixed it is a matter for regret.
But according to Gregor Wolbring, a bioethics professor in Canada who is part of the Ecumenical Disability Advocates Network (EDAN) which met over the weekend before the WCC Assembly - and who can speak from personal experience - it is not a simple matter of fixing the problem. There are, he believes, two different issues disabled people are facing.
One relates to how their body functions or their "impairment". Another relates to the disability that person actually experiences - "the social discrimination they face due to their impairment," he says.
"Both issues need different solutions. Some disabled people might want their impairment to be fixed so they can function like everyone else. However, many others rather want the disablement, the social discrimination to be fixed - some because they see their functioning as a variation and not as an impairment, others because the fix of the 'impairment' is economically less feasible than the elimination of the disablement.
"Often society is simply unwilling to eliminate the social discriminations. Indeed, society often generates new disabilities, new social discriminations, based on a person's functioning," he continues. "Even more, we generate more and more 'impaired' people by giving labels which medicalize more and more variations of human functioning which don't require that. For instance, someone is shy, so we say they have an anxiety disorder."
Furthermore we medicalize the very term "health", which he believes is a fundamentally retrograde step. "Years ago, the World Health Organization talked about health as consisting of physical, mental and social well-being," he says. "Although this definition is not perfect and could include other components such as spiritual wellbeing, today the term health increasingly is used in such a way that it's only about medical health and does not include social wellbeing any more."
This reconceptualization of health, he says, leads to the development that under "health" interventions, we only think about fixing the body of the person - we don't consider their social wellbeing. More than this, the increasing ability of new technologies to modify the human body beyond its normal capacities means the medicalization of the human body leads to the body being seen as just a step in evolution, and therefore defective.
He speaks, for instance, of "trans-humanists", who see no reason to believe that humanity has reached an evolutionary halt, and look to technology to help it make the next step. It's a concept which has theological consequences - one being that we could all be seen as being blemished.
The trans-humanist concept brings into sharp focus something close to the heart of the matter for Gregor. Improvements have to be paid for - and because it is very likely that only the rich or relatively rich will be able to afford them, he believes we will see the appearance of an ability divide and a new class of so-called disabled people. This is a class he calls "technology-poor disabled" people who can't afford enhancements.
There are issues around how such improvements are to be financed which go to the heart of our systems of economic and social justice, because it is impossible to consider disability rights without thinking about issues of poverty. As one speaker at the EDAN meetings pointed out, only two per cent of people with disabilities in developing countries have access to rehabilitation and basic services, and only three percent have access to education.
If a medicalized, trans-humanized form of "health" becomes available to only the rich few, with the many poor knowing that they can attain physical perfection if - and only if - they can pay for it, there are huge implications.
"If our concept of our body is not adequate - if I can't accept me as who I am, and can't afford the enhancement I think I need - there are far-reaching psychological and psychosomatic consequences," Gregor says.
What's needed, then, is for a fundamental rethink about attitudes to disabled people, and the addressing of the social discrimination they face. Gregor says that such a proactive approach is as yet a long way away.
"The disability rights approach to ethics is not accepted in academia, unlike the feminist approach. Medical ethics sees us as patients - our lower quality of life is caused by our impairment, not by social realities, and so the solution has to be found in our bodies. That doesn't allow for a disability rights approach.
"So we become a target. Genetic testing for instance was sold on the negative image of Down's syndrome; however it did not stop there. Now there are tests for sex selection, or the predisposition to cancer."
It is difficult to change the way society at large perceives persons who are obviously different. "There are things like access to buildings, fights fought for decades and fought over and over," he says. "If you have to fight for the elimination of social discrimination over and over, it's easy to see how disabled people with access to money move to an enhancement fix - why should I just get a bionic leg which is as good as yours, when I can get a better one and give you a good kicking? Many people fall for it."
But ultimately, it's a question of who people are, not in the eyes of others but in their own eyes and in the eyes of God, and the church has a role to play in changing that perception and eliminating the social discrimination. He quotes the scripture passage which says, "Make level paths for their feet" - a text which "could be also interpreted as supporting the elimination of the social barriers over the medical fix".
Ultimately, Gregor believes that there is more to disabled people than that "they want or should be medically fixed". In fact, he questions the distinction between "us" and "they". "At the core of being church there is no 'they', he says, "only a 'we'."
(*) Mark Woods is a UK Baptist minister and editor of the Baptist Times.