The Case for Conserving Disability

Nature Open-SourceFollowing up on a previous post, here’s highlights from “the case for conserving disability” by Rosemarie Garland-Thomson. I hope the quoted selections below suggest the ability to completely change your perspective on disability that Garland-Thomson’s article did when I read it.

“Eugenic logic tells us that our world would be a better place if disability could be eliminated.” “Eugenic logic … is simply common sense to most people and is supported by the logic of modernity itself.” This is reflected in the infamous phrasing of Justice Oliver Wendell Holmes, Jr. in upholding compulsory sterilization of the “feeble-minded,”

It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.

“We understand disability to confer pain, disease, suffering, functional limitation, abnormality, dependence, social stigma, and economic disadvantage and to limit life opportunities and quality.” Garland-Thomson challenges this conventional wisdom about disability by making the case for conserving disability.

To counter the eugenic logic, she presents “a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider is the cultural and material contributions disability offers to the world.”

Garland-Thomson makes a point that I began to understand since my daughter’s birth: we are all disabled in one way or another, and will “evolve into disability. Our bodies need care; we need assistance to live; we are fragile, limited and pliable in the face of life itself. Disability is thus inherent in our being. What we call disability is perhaps the essential characteristic of being human.”

Disability as a narrative resource

Disability helps to tell the human story. Garland-Thomson cites Leslie Fiedler’s 1978 book, Freaks: Myths and Images of the Secret Self. “Equating Nazi eugenics with contemporary reproductive technology that selects for elimination the so-called most severe disability,” Fiedler instead argues that “the spectacularly disabled among us contribute the cultural work of teaching the nondisabled how to be more human.” Indeed, isn’t that one of the main insights every character makes in every film ever made that centers on a character with disabilities: that the disabled person teaches the nondisabled how to care for one another better?

Disability as an epistemic resource

Because of being disabled, not in spite of it, the disabled have unique experiences in this world as compared to the typical population, from which insights and knowledge can only be gained because of the disability. Garland-Thomson cites as an example Helen Keller who generated “alternative or minority ways of knowing.” Being deaf and blind, Keller’s other senses were heightened through her having to rely upon them, resulting in her experiencing the world in a novel way. Specific to Down syndrome, this notion of disability as providing a unique source of knowledge is reflected in the statement by Roger Reeves on a possible cure for cancer in all people, discovered because of the overexpression of genes on the 21st Chromosome:

If there were no such thing as Down syndrome, we probably wouldn’t have found this because it wouldn’t make a lot of sense to take these oncogenes that we thought were genes that cause cancer and try to express them at high levels to try to prevent cancer. But that’s what happens

Disability as ethical resource

This final section of Garland-Thomson’s case is what really blew my hair back (or would have if I had any).

She cites heavily the arguments made by Michael J. Sandel in his book The Case Against Perfection: Ethics in the Age of Genetic Engineering. “Sandel argues that disability, specifically children born with disabilities, offers us the ethical opportunity, fundamental to the human condition to accept and make a life what he calls ‘giftedness.'” “To accept children as gifts is to accept them as they come, not as objects of our design or products of our will or instruments of our ambition. “Sandel argues for preserving disability and disabled people, in particular the opportunity to parent disabled children, rather than eliminate them through selective abortion and genetic manipulation.”

“[Sandel] puts eugenics and genetic engineering in the same category and objects morally to eugenics as the ‘triumph of willfulness over giftedness, of dominion over reverence, of molding over beholding.” Citing Eva Kittay, Garland-Thomson notes that Sandel’s argument is consistent with Kittay’s point that “our modern ethic of autonomy and the denigration of dependence and interdependence diminishes the humanness of us all.”

“In Sandel’s view, the cultural work of disability is to defeat our hubris.”

The problem of suffering

The ready critique of the case of conserving disability is that Garland-Thomson, Sandel, and others must be arguing in favor of suffering, since to conserve disability means to conserve human suffering. Garland-Thomson makes counter-counter-arguments against this claim that she is wanting to perpetuate human suffering.

First, it is well-established that the non-disabled have a much harsher view of a life with disability than those actually living with the disability. “The problem with empathy … is that it may lead to a ‘preoccupation with self that obscures the other,” i.e. that whose suffering that is actually being alleviated is the typical person, not the person who has the disability. “The disabled 20th-century American author Flannery O’Connor cautions against the peril … that empathy, what she calls ‘tenderness,’ for the suffering of others can lead to the gas chamber.” Oh, we’re just sparing those poor souls a life not worth living; we’re alleviating suffering. But, again, whose suffering? The disabled or the non-disabled viewing the disabled?

This point is demonstrated by Garland-Thomson’s reference to a wonderful on-line piece written by Chris Gabbard about his profoundly disabled son August (who recently passed away). “Gabbard observes that many ‘well-meaning people would like to put an end to August’s suffering, but they do not stop to consider whether he actually is suffering.” Gabbard admits caring for his son likely limited his professional career, but it expanded his understanding and experience of the world. “Ultimately, August’s gift to Gabbard … is what any human relationship provides to any of us: the ‘opportunity to profoundly love another human being.'”

Conclusion

Garland-Thomson’s article is extensive, intricate, and I do not do it justice with my piecemeal quotes. If you can get a copy of it, and this post has piqued your interest, then I encourage you to read it for yourself. And, if like me, I expect you’ll then make plans to read several of the sources she cites (Sandel is on my reading list).

She concludes by noting that “Eugenics is about controlling the future. It is the ideology and practice of controlling who reproduces, how they reproduce, and what they reproduce in the interest of controlling the composition of a particular citizenry.” On the other hand, “Disability and illness frustrate modernity’s investment in controlling the future.” “The persistence of disability in the human condition frustrates modernity’s fantasy that we determine the arc of our own histories.” “So, disability’s contribution, its work, is to sever the present from the future.”

For me, it’s enough to make the case for conserving disability if it means we will avoid repeating the atrocities of our eugenics past.

What do you think? Is there a case for conserving disability?

Comments

  1. Thank you Mark for posting this. The Garland-Thomsen article is on my reading list. I don’t disagree with any of the points above, and I have made some of them myself – in particular, about how the non-disabled may grow from contact with people with disabilities. I have seen this. But there is one thing here that bothers me – we’re in danger of reducing people with disabilities to instruments for our own self-betterment. People with disabilities live for themselves and are worthwhile in themselves, not for what they can teach the rest of us. As I say, I agree with everything above, but I also just want to add this footnote.

  2. suzanne coutts says:

    I am the Mother of a beautiful Daughter with Down sydrome, I shared the best fourteen years of my life with her. She made me smile everyday and allowed me to live in her perfect world. When she passed away suddenly, everything perfect became “normal” and I was lost. Years later and I am priviledged to be caring for two boys with Down Syndrome, I have found that perfect world again and I am guided by an Angel.

    • I am so happy to see your post. I believe the people who are so adamant that getting rid of ‘disabilities’ would be so good are mainly people who have never taken the opportunity to get to know someone with a ‘disbilitiy’. Most people with Down syndrome are the loveliest, most loving people you could ever know. That is what we would be missing of there were none in the world. I agree with Dale Evans Rogers, whose daughter, Robin, died from complications of Down Syndrome when she was two, in thinking that many when caring for people with Down Syndrome, we could be entertaining angels unaware.

      • I agree that many who characterize individuals with Down syndrome as “burdens” have not taken the time to have a relationship with someone with Down syndrome. And, those that do take that time discover that they’re no angels, but, as you say, lovely and loving people.

  3. Disability is a social construct.. everyone is disable depending on the setting where they are thrown in. I live in Denmark but I do not speak a word of Danish.. well here we go.. I can’t read the letters from the local Institutions.. I can’t understand the signs from road construction or warnings from local stores,, I cant even understand the food lavels.. Do I feel disable? constantly.. now I have tools that help me deal with my disability like google translate,.. Is the same for people with Disability.. given the tools and eliminating barriers .. they will be able to function to their ability.. just like anyone else.. Getting rid of disability is plain eugenics.. specially when quality of life is not the main factor..
    Here is Denmark is absolutely ridiculous the obsession for eliminating DS .. we have everything provided, schools, dentist, health care… caring for a child with disability should not be an economic burden as it could be in other countries.. and still they call themselves progressive… to me is painfully absurd and unfair…
    I do not have a child sister or family member with disability.. but this world without intellectual disability will become a poorer place to live.. I will be sorry for my kids,,,

    • Thank you for sharing your experience from living in Denmark. A main criticism of those who question continuing a pregnancy is whether there will be enough support services for the child. The concerning thing you raise is that even in countries with robust social welfare policies, where citizens are provided a decent baseline of support cradle to grave, these same countries have some of the highest termination rates–much higher than countries without a social safety net. It distills down that sometimes it’s not out of a concern of whether the person with disabilities can be cared for, it’s whether there’s a desire to care for that child.

      • Great response Susana, from direct experience I have often said if the “typical” population of people treated each other with as much love, support, compassion and grace as the population of people with disabilities tend to do especially people with DS) what a wonderful world we would live in. There is nothing wrong with my sister with DS or my son who has DS, they are perfectly fine just as they are leading functional, happy, productive lives…It’s the way society views them and the obstacles it puts in their path to success that is debilitating. Dr. Claudia Coen, Nature and Nurture Nutrition Center

      • mark state says:

        The problem with this logic is that it places the disabled as “lessons for the abled”.. An apt discussion would be do we cancel in-vitro surgery to correct spinal bifida or heart disease, because we risk eliminating a class of individual that “teaches us a lesson”. Would a blind child not rather see if the surgery was possible, without being told that his curing would be unethical because it eliminates a class of people to make others feel good for themselves.
        When people talk of normal lives, they expect the same that is afforded to those that are generally posted here. They are born, grow up..increasing in independence, then move on to be independent adults that can take care of themselves. Saying that their is no normal denies the advantages that most, if not everyone, here that are posting take for granted. Eventually chromosomal defects will be able to be repaired. It would be extremely unethical to lament the passing of the disease that robbed those children of the same advantages you enjoy…entirely because you decide you are more advantaged by the existence of them.

        • Your response, while well-written, does not address the case for conserving disability in full, but instead you make y our own argument that the case is simply to advantage others, which is not what is argued by the case for conserving disability. Also, the case for conserving disability is not arguing against treating conditions that can be treated.

          • mark state says:

            Many of the points listed address societies impact from the disabled, making it seem that those groups must exist for humanity to learn what it truly means to be human.

            specifically the epistemic, narrative, and ethical resources. Gaining insight is possible regardless of born physical characteristics, just be the inherent nature of the human condition to become ill or damaged by accident/age. Several points made not only focus on abortion but on genetic manipulation. There are some comments here that also take it to the extreme that even if the child could be cured (let’s widen this to not just DS but autism and other conditions that can be debilitating) they would choose not because the child would not be the same. That is even a more extreme position, but it is fundamentally the same as the focus on some to avoid genetic manipulation to eliminate DS. I know that every parent should, if they all do not, love their child as they are. Once born you must do everything you can to make their lives full and as loving as you can. The arguments that i find concerning are the maintenance of the conditions as a means to improve society. Society will be just fine if an autistic child (non-verbal), wakes up one morning and speaks. I’m sure their parents can adapt and love the new change. Same with DS, if tomorrow a son or daughter wakes up and is less cognitively impacted or their health conditions disappear..they should be able to love the new change.

            Instead people seem to be focusing on keeping status quo as an ethical choice. That is and should never be the case. Abortion in this instance is the real issue. Not the eradication of birth defects, chromosomal, or other diseases/conditions that affect the population. The eradication of those issues, does not hurt society..it’s the death of children because of their perceived worthlessness that is the true problem.

          • I agree with your last point. And, the point of making the argument that disability should be “conserved” is to force those that would seek to eliminate disability to instead be humble and accept it as part of the human condition. I do not think the conservation argument is against treating individuals where they can be treated. But what is consistent with the conservation is argument is to say that whether the child gets treated, should be a family’s independent choice and not one forced on them either by state policy or a societal norm. Take the example of the deaf community: there are deaf parents who have used prenatal testing to ensure they have a child born who is deaf. It is because the parents have lived their lives deaf and do not find a condition requiring treatment. At the same time, once the child becomes of age, I do not think the conservation argument would force the now-grown adult to not seek treatment if the person wanted to have treatment, e.g. a cochlear implant.

  4. Greetings Mark, I loved your article so much that I wrote about it on my blog. Thank you, thank you, for this great though-provoking post. If you’d like to read what I wrote, Please visit http://lifewithcharley.blogspot.com

    • Thank you, Sherry. I appreciated your comments on being called out of our egos by caring for another person. I also like any post where I’m linked with Mardra Sikora!

  5. Most people are NOT disabled

  6. Cherrie Evans says:

    Thank you so much for posting this information. I am speechless. My niece is Down Syndrome I have learn’t so much from her and I am hoping that my children (no disability) can be have the boys that she is. She is so loving, friendly kind and caring. She loves to help everyone. She has worked Camp Day with Tim Hortons, and McHappy Day with McDonald’s. She amazed and wowed the people she worked with. I learn things from her daily. She has taught me one of the best lessons NEVER GIVE UP NO MATTER WHAT YOU CAN DO IT IF YOU TRY. I know help with the Special Olympics and the people we have met are amazing. If we lose the Down Syndrome in the world and other disabilities we lose so much more.

Trackbacks

  1. […] succeed, precisely because they are underdogs. The lesson is akin to the because of/not in spite of case for conserving disability. Underdogs, like those with a disability, offer new knowledge because of the experience of being an […]

  2. […] about the problem people with Down syndrome face. I would add her point to the post I wrote about conserving disability and how we are just now starting to see what having Down syndrome truly means now that individuals […]

  3. […] Update: A related post on this subject, ”The case for conserving disability.” […]

  4. […] stated at greater length at this post, the case can be made that children born with disabilities preserve the ability of parents and […]

  5. […] rather, if they did notice, it was to note how well she was doing with Down syndrome, not in spite of […]

  6. […] argument is not one based on a defense of human genetic diversity–though I have written extensively on how Down syndrome can and should be considered yet one more expression of […]

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