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IEET > Rights > Disability > Personhood > Life > Enablement > Vision > Technoprogressivism > Staff > J. Hughes

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Of Dogs and Disabilities


J. Hughes
J. Hughes
Ethical Technology

Posted: Sep 29, 2013

The new documentary Fixed: The Science/Fiction of Human Enhancement explores the difficult relationship of human enhancement and the disability movement. It is interesting and generally well balanced. But there is one brief clip of me from a television debate which apparently leaves audiences gasping. It is one in which I appear to compare people with disabilities to dogs. I really didn’t, and was actually making a substantially different point quite contrary to the filmmaker’s tortured attempt to link transhumanism to 1930s eugenics.

The clip comes from a debate I had with the disability rights activist Gregor Wolbring a couple of years ago on Canadian television. In the debate, and in the brief clip, I say that it is immoral to encourage people to intentionally bring embryos with disabilities to term on the grounds that they will bring joy to the family. What I don’t try to say in the debate is that this common trope ignores the burden on caregivers, and begs the question of whether children with disabilities would bring any more joy to their families than children without disabilities. I also don’t go anywhere near the issue of non-anthropocentric personhood ethics which tries to figure out what the moral standing might be of severely cognitively disabled humans in relationship to animals. Even for me, that would have been juggling with knives on live television.

What I do say in that debate is that it is immoral to impose a disability on a child on the grounds that their disabled existence might entertain or enrich others. That is partly the procreative beneficence argument but underlined with a Kantian “treat others as ends and not means” point.  Procreative beneficence says that when we have choices about the kinds of children we can have, as we do with prenatal testing, that we should always choose the children with the best life options. To ignore this obligation when given a prenatal diagnosis of severe disability is an unethical decision, and to do so on the logic that others’ lives will be enriched by the child’s disability is imposing a disability on a child for an especially unethical reason.

In the clip from the documentary I say that if parents want to enrich family life it would be better to get a dog.  OK, in retrospect that was ham-handed.  My bad.  But I immediately follow it up by saying children should be had for their own sakes. Of course that is what the filmmaker fades out on to switch to images of 1930s eugenics propaganda. After making the link that transhumanists like me are modern eugenicists she comes back to an interview I had given her in which I discuss “liberal eugenics” as being the position that parents should be given reproductive choices, and that those reproductive choices will naturally lead to there being fewer children born with disabilities, and in the future to smarter, healthier and probably more attractive children. That is of course something I am quite willing to defend, although I always make clear that the term eugenics is so fraught with baggage that I see no need to rehabilitate it, unlike Nick Agar who wrote the book Liberal Eugenics. I prefer the term “germinal choice.”

So, ironically, my attempt to say that disabled children should not be treated as pets – if you want a pet get one but don’t treat kids that way - is used to imply that I think disabled kids are the same as pets.

Recently Douglas and Devolder have taken issue with the individualism of the procreative beneficence position and have argued for a more communitarian ethic of “procreative altruism” , that we should include the social utility of a child in our reproductive decision-making. In reference to the point I was making one could use a reproductive altruism argument to say that having a disabled child for the enrichment of others would be a good choice, if it was in fact the case that having a disabled child was more enriching for families than having a non-disabled child.

But since the social utility arguments are in reality stacked heavily against kids with disabilities the logic of reproductive altruism is an even stronger argument against bearing children with disabilities. At least reproductive beneficence says that if you anticipate not being able to bear another child, or that the child’s disabilities may be cured or ameliorated by future technology, that it could still be an ethical choice to bear a disabled child.  Reproductive altruism makes it even harder to argue for choosing disability as an ethical choice.

For a fuller articulation of my thoughts on disability and transhumanism you can see this piece, in which I also muse about the anxieties that those of us without visible disabilities face in any debate about disability. Like discussions of race or gender, it is very hard for preconceptions not to distort every communication into a caricature, and likewise hard for people to confront their own underlying biases. Those who think that I and other transhumanists are hostile to people with disabilities, rather than simply advocates for greater human enablement, will read my clip in the documentary as a Freudian slip revealing my dismissal of the rights and value of disabled lives. There is probably not much I can say to convince them otherwise. But for the rest let’s try to maintain an open dialogue around disability and enhancement without the caricatures and demonization.


James Hughes Ph.D., the Executive Director of the Institute for Ethics and Emerging Technologies, is a bioethicist and sociologist at Trinity College in Hartford Connecticut USA, where he teaches health policy and serves as Director of Institutional Research and Planning. He is author of Citizen Cyborg and is working on a second book tentatively titled Cyborg Buddha. From 1999-2011 he produced the syndicated weekly radio program, Changesurfer Radio. (Subscribe to the J. Hughes RSS feed)
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COMMENTS


I have not seen the documentary, but it sounds interesting. When clips are cut off prematurely to give an impression of something that’s not quite accurate, it’s always good to hear the rest of the story, as Paul Harvey would say.

I enjoyed the piece, but I will take slight issue with your contention that “it is immoral to impose a disability on a child….” In the situations described, the parents are not able to “impose a disability” on the child. The child, due to its genetic makeup, either has one or doesn’t. The parents’ only choice is to terminate or continue the pregnancy. The child—presuming appropriate prenatal care is given—will be born with a disability regardless of what the parents do, short of terminating the pregnancy.

What’s interesting about the debate over whether to terminate a pregnancy with a “disabled” child is that it’s the genetic testing that allows parents to even be faced with this decision.  I recently read an article on the high costs of pregnancy that said some health plans don’t cover pregnancy at all or cover just the bare bones. Women in the article were weighing costs when deciding which prenatal tests to get done. And I know that some doctors advise healthy, young women not to even bother with certain genetic testing because they’re low risk.  So, even though there is the ability to get more information on fetuses, it’s not as widespread as it could be.





RJ - You are certainly right that many people see a difference between the decision to intentionally impose a disability on a child by, for instance, blinding them, and the decision to not abort a pregnancy with a prenatal diagnosis of disability. The procreative beneficence applies more clearly in the case of in-vitro fertilization when there are multiple embryos to chose from. In that situation you don’t face the emotional complexity of an abortion, and most people agree that choosing embryos without disabilities would be the right choice. The situation of prenatal diagnosis does face the woman with the choice however of whether to abort and try again, so long as they think they have a chance of another pregnancy. Choosing to proceed with the pregnancy creates a child with a disability when otherwise you would have a child without one. So the ethical obligation seems the same, albeit far more complicated by the abortion decision.





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