This is what bioethicist Adrienne Asch says about it:
What I want to argue is that Peter Singer is wrong on both his facts and his premises. One of the premises is that you can come up with a calculus of happiness, of value, and you can decide what's more valuable than what. He said in the close of his talk that Not Dead Yet wasn't opposing efforts to research and to cure disability. That may or may not be true- I actually think Not Dead Yet has more complicated positions on that that I could get to in a question and answer period if you wish. In order to say that the lives of people with disabilities are valuable to themselves and to others, I don't have to claim that disability is per se valuable. Disability is only one characteristic of any person's life, and that is any person's life whether it is a 2-day old infant or a 20 year old young woman or a 75 year old woman or man. Along with that disability, whatever that disability happens to be, come a whole range of other characteristics.
The mistake that many people make, whether it is in selective abortion or notions of withholding treatment from disabled newborns, is that that disability will stunt the life prospects of the individual and burden the family with no redeeming other benefits, with no redeeming other attributes. It simply is not true. And I think that if Peter Singer had really been spending a lot of time with families and infants and young people, even with what he wants to describe as "severe cognitive impairments," he might be writing different things. The infant or young child with seizures, the infant or child with paralysis, the adult with a cognitive disability, has other characteristics, interests, aptitude, methods of communicating, desires. And that is true for virtually all people with disabilities, whether those disabilities are Down Syndrome, Spina Bifida or whatever, including people with so-called significant or severe cognitive deficits (if you wish to call them that). There are instances, more and more of them in the United States and other countries, where people with cognitive disabilities and physical disabilities as young adults living with supervision or without, making decisions, holding jobs, having friends, sometimes being parents, sometimes raising children of their own.
Notions that Singer has argued about lack of awareness, lack of rationality, inability to plan, to have a future, to think about a future even for the infant with a known disability in virtually all cases are simply wrong. Yes, I'm sure you will be able to tell me about some instance where there is no measurable self-awareness, but we are talking about a minuscule number of individuals. And I'm going to say that for the parents of the infant with Spina Bifida or Down Syndrome, to take 2 of the most common disabilities for which either abortion or withholding of treatment has been a method of alleviating disability, those parents who believe that their infant has measurably worse life prospects are fixing on what one label and one characteristic means and not examining life as a whole.
Is it true that it is better not to have a disability than to have it? Well, whose to say? Is it better to have more money than less? We tend to think so in the U.S., but more money than less for what? How do people measure these things? For some people, money is a really important value, for other people something else is an important value (it might be power, it might be learning, it might be sociability, it might be artistic creativity). I think it is simply wrong to say that you can put all desires, pleasures, goals on one calculator and one measure and decide that life without disability is always better than life with it. One could say that life without disability means that you don't have to expect a certain number of problems, but that's all you can say. It doesn't mean anything else about what that life will consist of.
Another point that I would like to make is that even using Singer's concerns about spreading resources so that they give value to the greatest number of people, his concerns about redistributing wealth, his recognition that Western first world countries have much more often than they need and the third word could be a much better place if we would have fewer $500 dinners and distribute our money (perhaps if we taught at and attended other than $30,000 a year institutions of higher education as well). That same logic can and should apply to changing those things that are often wrong in the lives of people with disabilities.
If you want to say that life for people with disabilities is measurably worse on certain characteristics than life for people without, if you want to look at educational attainment, if you want to look at national income, if you want to look at rates of employment, if you want to look at rates of social participation, you can show that there are gaps between people with disabilities and people without in the United States even 9 years after the passage of the Americans with Disabilities Act, almost 25 years after the passage of the Rehabilitation Act, and other civil rights kinds of legislation. That's true. But where bioethics and medicine and the general public have failed people with disabilities is to assume that although inequities in the attainments of women, African-Americans were due to sexism and racism, inequities in the attainments of people with disabilities were somehow really attributable and intrinsic to the disability. I want to say that's not so. If we changed a great number of things in society, as Singer mentioned, we could change those gaps and disparities for people with disabilities and the alleged burden and suffering and tragedy of their parents and their friends and their siblings.
When parents talk about how they would be willing to have this disabled child (be it fetus or newborn), but their other children would suffer and that's not fair, I think they are making much of the same mistake. They are assuming that those other children, the "normal" children, are only going to be burdened by this variant, this difference. As opposed to recognizing that each of those so-called "normal" children differs from one another as well. And how many multi-sibling families do you know where you haven't at one time in your life thought, "I would really like to get rid of my annoying older brother? If I didn't have my older sister or my younger brother just think of all the things that could happen to me." Why is it any different for the brother or sister with a disability? Only because we think that disability is some kind of universally bad, never compensated for, form of human variation.
Now, having said that, I don't have to say that having a disability never means assistance, never means laws to change practices, never means if you will "reasonable accommodation" (which is a phrase in employment disability law), or inclusion, or program accessibility at universities. It can, it does, it should. But it means those things because it flows from a notion that all people have potential to have interests, to have futures, to have desires, to have life plans, and that if we accept that, societies need to accommodate to all people, not only to some people.
With that said, I want to argue that the reasons that people wish to terminate the lives of disabled newborns, the reasons that physicians have given for withholding treatment, the reasons that many people choose abortion of their diagnosed fetuses, flow from many of the same views that Singer holds and they are misguided views: Assuming that there is only one standard of what makes a life valuable.
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There are several web sites that I would recommend you peruse -- perhaps you will find some answers there.
http://www.ragged-edge-mag.com/
http://www.thalidomide.ca/gwolbring
Can I be freed of this thread now? - please! -- I have other work to get done. thanks. Marta Russell
Ken Hanly wrote:
> But is it somehow radical and demeaning to claim as Singer does in your final quote
> that other things being equal it is better not to have a disability than to have it?
> Consider the following cases:
> You approach a paraplegic friend hoping to convince them to join the disbled
> rights movement. You start out by asking them whether they would prefer a life without
> their disability or whether there is less happiness in her life with the disability than
> without. What would your friend be likely to reply?
> Next you go to a second disabled person,one who is disabled because her mother
> took thalidomide. This person is suing the manufacturer of thalidomide for 8 million
> dollars for damages etc. You ask her if she prefers her life with stumps for arms to a
> normal life. Isn;t she likely to reply, assuming she does not become too angry to reply:
> Of course I prefer a life with functioning arms and I am suing because the thalidomide
> manufacturers are responsible for the way I am. Shouldn't you respond. But you are
> valuing your disabled versus an alternvative normal status and assigning superior value
> to the normal status.. You are worse than SInger. You actually are suggesting some
> monetary measure, that eight milllion dollars is the difference in value between you
> being disabled and not. She might very reply that no amount of money can compensate for
> her disability.
> .
>
> Cheers, Ken Hanly
> Marta Russell wrote:
>
> > OK here it is and really, this will be my last post. Singer does assign value to the
> > disabled/nondisabled status of the infant.
> > This is a quote from Singer at a Princeton event where he debated Adrienne Asch, a
> > bioethicist who is blind:
> >
> > "If there is one point with which I and the anti-abortion forces can agree,
> > it is that birth does not really mark a sudden change in the nature or
> > status of the neonate (of the fetus or newborn). On the contrary, there is
> > basically a continuation through that point. And so, I think that indeed
> > it's a reasonable view to take both during pregnancy and with the immediate
> > newborn that the life has barely begun if it's beginning in a very clouded
> > way (with prospects that are clouded), then it's reasonable to say no,
> > better not to go on with this- better to consider starting again.
> >
> > Now is that an unreasonable prejudice or bias against having a disability?
> > Let me say that I think parents ought to be well advised about the nature of
> > the future of their child. And I agree (and I think I have perhaps learned
> > from the disability advocacy movement) that doctors are not always
> > well-informed about this and it's a good idea to bring in organizations or
> > people from organizations concerned with a particular disability of a child
> > if parents are in any doubt and get some advice and information from them.
> > But I don't think I am therefore required to deny the view that other things
> > being equal, it's better not to have a disability. "
> >