Prenatal testing and disability rights

An underlying theme of The Speed of Dark is disability rights in general, but more specifically autism rights in a world where the genetic cause of autism has been determined and a prenatal “cure” is given to any fetus that is found to be autistic.   Of course, here in the real world we aren’t at that point – yet.   But we’re getting there.

Since reading The Speed of Dark, I’ve picked up Prenatal Testing and Disability Rights to try to get a more detailed understanding of the various opinions and considerations around the question.  I’ve given this some thought before – I posted the following as To hear or not to hear, is that the question? in September 2006 – but it’s a big question deserving a bit more thought.

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In the world of autism the question, “If there were a cure available for you or your child, would you use it?” is pretty much rhetorical, food for thought. As such, discussions are more theoretical than practical. In the world of the deaf and hard of hearing, however, cochlear implants mean answering this question has much more practical implications.

At first thought for most ‘hearing’ people (here we go with labels and descriptors again), a technology that would allow or restore hearing seems to be a no-brainer. I think that most hearing parents of deaf children would jump at the chance to make their kids “not deaf.” (For now, I’m going to ignore the fact that the results of cochlear implants vary person to person.) As those kids get older, though, the question becomes a bit more complicated, as the kids (and then adults) establish their identities in the context of the deaf culture. (For a similar discussion of the impact of age on the decision to apply/impose a cure, see my earlier post Thoughts on curing autism.

There are many similarities in the arguments on both sides, and I think that the debate in the deaf community may offer some insights into the same question for autism. For example, the following description of different perspectives could very easily be applied to the question of curing autism:

The (deaf community’s) perception is that there’s nothing wrong. There’s nothing that needs to be fixed. Our perception is, there is something that needs to be fixed. So from the very foundation, we’re diverging in our perspectives.

A Google search on Cochlear Implant controversy brings back quite a few listings, here are some examples of comments in the debate:

  • The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority.
  • The technology seems like a medical miracle to many hearing parents and doctors who see the technology as a cure for deafness. But the cochlear implant has long been the center of a stormy debate. Some deaf advocates worry that the view of deafness as an illness to be cured marginalizes the deaf and stigmatizes those who can’t –or don’t wish to–use an implant.
  • Most doctors schedule the procedure as soon as possible in young children to increase their odds of acquiring oral language skills. But some deaf advocates worry that hearing parents may wind up making a choice their deaf children would not have made for themselves.
  • That view of hearing loss as pathological is at the heart of the cochlear controversy. On the extreme end, some deaf advocates who communicate only via sign language and shun any attempt to learn oral language, view the device as a threat to their unique, sign-language-based culture. But even to those with far more moderate views, the cochlear implant is a symbol of the hearing world’s desire to “fix” deaf people.
  • The conflict concerning cochlear implants is centered around the definition of disability. If deafness is defined as a disability, in the eyes of many, it is something to be altered and repaired. According to the medical view, deafness is a disability. On the other hand, if deafness is a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. This opinion is based on the cultural view of deafness. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.
  • Altering a deaf child with surgery at an early age would only cost money once. In contrast, providing interpreting, note taking, and assistive technology would not only continually cost society money; these practices would also create inconveniences for others because of the language barrier.
  • Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, “What is normal?” and “Do the quality and quantity of the benefits outweigh the risks involved?”.
  • Parents, confronting a new diagnosis of deafness, react with a wide spectrum of emotions including denial, guilt, the need to blame someone, and the need to find a miracle. Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child “normal” or whole again. This attitude can have serious social and emotional implications. A child who is told she is “broken” and needs to be fixed will forever see herself as less of a person because of her deafness.
  • The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective. They are told that something is wrong with their child. It may never be mentioned that deafness is considered to be a cultural identity for some people and that implants are seen as unnecessary. The parents of the deaf child, wanting only what is best for their child, will want to make sure that the child has the opportunity to succeed. If all they have been told is that the child will need to speak to function and that there is a procedure that can provide this, of course they would want the implant. To the parents, it is seen as the instrument of success.
  • Et cetera.

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6 thoughts on “Prenatal testing and disability rights

  1. Jen

    I don’t think that it’s ever an easy question to answer. I’ve been fortunate enough to know a lot of people in the deaf community (more adults than children), and have seen them come down on one side or the other in the cochlear debate (and make some pretty difficult decisions about theirs and their child’s life in the process).

    I think that while the cochlear debate does pose some interesting questions to individuals and parents in the autistic community there is one big difference- in general, the deaf community is actually a real-world community. Not just online- if you are deaf and living in a reasonably sized city or town (at least in my Southern Ontario experience), you probably have other deaf people that you see on a regular basis, interact with, have fun with etc. Most of the deaf people that I know interact mainly with each other socially- not necessarily because they dislike hearing people (although in my experience there is an extremely strong prejudice against hearing people which may or may not be justified), but because they like being with people where there are no barriers to communication, where many things are taken for granted or left unsaid, etc. It really is a fairly closed community in my experience.

    While I think that the cochlear implant controversy may help to inform the discussion around disability rights and autism and prenatal testing, I do think that the presence of the “deaf community” makes it at least a bit different. Knowing what I know now I wouldn’t hesitate to have a deaf child as I know the resources that are available to them.

    I honestly don’t know where I stand on prenatal testing. I’m not really sure that it’s appropriate to separate prenatal testing for autism from prenatal testing for Down’s Syndrome, deafness, schizophrenia, Trisomy 13, PVL, etc (assuming that any or all of those tests become available). We’ve all seen what happened once amniocentesis became available…isn’t it something like 85% of Downs’ Syndrome children are now aborted?

    I know that my kids (all autistic) make the world a better place and have given a lot to the people who have been in contact with them. I have also seen my son in pain for years on end with horrendous self-injurious as well as aggressive behaviours, and while we’re working on them and he is doing fantastically well, the thought of him reaching his full growth (likely about 6’4″ or so and about 220 pounds just with genetics), is frankly terrifying for a lot of people who deal with him, no matter how much we love him. I have friends with autistic children whose life-expectancy is extremely limited due to their excessive head-banging. I’ve had a friend with a child with PVL who lived to be six, and in that entire time she did nothing but scream in what everyone assumed was pain, and not recognize anyone around her, ever. And I’ve spent too long in pediatric oncology wards watching children who were born in hospital and were never able to leave it undergoing numerous horrendous (but necessary) medical treatments to prolong their too-short lives.

    I can’t imagine my world without my children in it, but if prenatal testing had been available for autism at that point I probably would have aborted them, as the thought of autistic triplets would not have been one that I could have wrapped my mind around. (needless to say, I was also completely clueless about autism- I think that my two exposures were Rain Man, and an educational aide friend whose wounds I had to fix every night after her “child” with autism bit her all day). I am so glad that I had my children, and as far as I can tell, they are all very happy to be alive. They contribute to the world in so many ways, and we would all be poorer without them.

    So I’m very torn. I can understand the fears and motivations of parents who would choose to abort because of lack of education, and I can also understand people who think that there are some lives which may be so painful and short that it might be a kindness to have them not happen. People who tell me “it’s God’s will” that my son eats himself, or that an 8 month old baby is covered in tubes and will never escape that environment, or children who never have a moment without pain…those are the people that I want to clobber.

    In the long run I think that I would prefer to have prenatal testing unavailable without better education. Assuming that I had had the choice of prenatal testing for my autistic children I probably would have aborted because I wouldn’t have been able to grasp how I could have dealt with it, when in reality I’ve not only dealt with it but all of my children lead fulfilling lives, and my life has been greatly enriched by having them. I’m also disturbed about people making distinctions between prenatal tests for different disorders or conditions- while I may have my own opinions on whether a child with Downs’ Syndrome is as valuable as a child born with nothing other than a brain stem, it is not a guarantee that I’m right, or that I have the right to decide whether other people test or not. Is there a difference between prenatal testing for autism or prenatal testing for congenital abnormality that would cause death within the first year? Or a condition that causes a child to live in pain for a few years and then die? I’m not sure where the line would be drawn.

    I also hesitate to have legislation in place in either direction, because I know that my beliefs and perceptions may not be suitable for everyone. I am very pro-choice, but I’m also capable of realizing that people may make poor decisions for a multiplicity of reasons. I’m glad that prenatal testing for autism was not available when I had my children, but I also recognize the pain of parents of children who suffer horribly when they didn’t have access to prenatal testing.

    Sorry if this is disjointed- I haven’t slept for a few days 🙂

    Reply
  2. Brett Post author

    Jen, thanks for the comments. I didn’t find them disjointed (hope you get some sleep soon!). This is, as you say, a complex issue with no simple answers.

    And thanks for being so honest in what you share. I think that your experiences will help anyone facing the decision you faced better understand their own situation and potential outcomes.

    Reply
  3. codeman38

    Yet another issue, that I’m surprised wasn’t mentioned:

    For those who have been deaf through adulthood– and particularly for those who never acquired any spoken language– a cochlear implant’s not going to be as helpful at that late an age as it would for a deaf child. Spoken language will never come as ‘naturally’ at that late an age, and aside from that, the deaf individual will have to get used to a whole new way of perceiving things.

    Similarly, autistic adults have already worked out a number of coping strategies based on the autistic perceptual style. A ‘cure’ might actually make things *worse* for adult autistics, in making those coping strategies null and void and radically changing the way an individual perceives things.

    Reply
  4. Patrick

    I am usually opposed to even considering discussion of ‘cures’ due to the dearth of ‘cures’ available for conditions like Muscular Dystrophy, Marfans, Downs, Lupus, Cystic Fibrosis. We have been looking for cures for these and many other conditions for years, and haven’t gotten anything more than remedy’s for some of the symptomology. So, what good is it to bring up a real existing modification like a cochlear implant, when there is nothing even remotely looking like a cure for autism spectrum disorders yet?

    Reply
  5. Jen

    *So, what good is it to bring up a real existing modification like a cochlear implant, when there is nothing even remotely looking like a cure for autism spectrum disorders yet?*

    Considering the ethical questions involved, in my opinion it’s really never too early to start considering them.

    Reply
  6. Brett Post author

    @codeman38:

    Point well taken. In fact, a key part of the cure process in “The Speed of Dark” is a ‘rehabilitation’ period that retrains the mind to get used to being ‘non-autistic.’

    @Patrick:

    Although part of my reason is covered well by Jen, my other intention in using the idea of a “cure” is as a way to segue into the question of selective abortion based on results of prenatal testing. By understanding what drives people to get – or not get – cures where they are available, we should be better able to understand what drives selective abortion.

    This understanding will help us to make sure the proper information and education is available for parents to be when they learn the results of the prenatal test and are deciding what to do next.

    Reply

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