I myself tend to play the role of this “reasonable” professional: you may have noticed that my views on growth attenuation (and most other topics for that matter) is more nuanced and less black and white compared to those of other disability rights activists who are blogging about this topic. While it’s important for me to safeguard the rights and dignity of people with disabilities, I also recognise that there are many other things that are important to me, and trade-offs are often inevitable (see here for a different example of this sensibility in play).

Personally, I feel comfortable operating in this mode, and generally I wish more activists were like me. But I also feel that the presence of single-minded, unreasonable activists has some value–especially when the other side of the controversy is represented by such individuals. And that voice was sorely lacking in the composition of the working group.

First-time commenter here — I came across this analysis while looking around for more details on the working group’s processes and conclusions, in conjunction with my own work. I think this is a great summary of the symposium discussion, and I really appreciate your insights, both in your comments at the symposium and in this writeup.

I am surprised by one aspect of what you’ve written here. You stress that there were no “disability rights activists” involved in the working group, contrasting the “disability studies perspectives” of Miller and Asch. While I agree that the working group’s composition was much too skewed toward ivory-tower perspectives, I am surprised by the bright line you draw between “theorists” and “activists” with regard to Miller and Asch. I would say that much of Asch’s writing *is* activism — an important part of any movement is educating those outside of the community about its issues and perspectives — and Miller’s history in disability rights litigation places him, to my mind, right in the center of a very important branch of disability rights activism. I *am* a disability rights activist, and from that perspective, I would claim both Asch and Miller as belonging to the same movement I do, and as important contributors to it.

So what I see in the working group’s composition is not the exclusion of disability rights activists, but rather a strong elite class bias with regard to those that they choose to include — and I do think that this undermines their claim to represent all the relevant perspectives. (Doubly so, I would say, since this is an issue that deals with cognitive disability, and the marginalization of people with cognitive disabilities is an ongoing problem within the disability rights movement itself.) While I don’t think that holding a position within academia undermines anyone’s credibility as a disability rights activist, I do think it’s important to consider what Miller and Asch have in common with one another that they don’t share with the bulk of the community they’ve been chosen to represent — and I think the convenors of the working group, as well as the working group itself, did poorly on that count.

But having said that, I’m not sure whether I’m simply using different words to get at the same thing you were, or whether you and I see things more fundamentally differently on this point. If you’re inclined to spare the time, I’d love to hear your thoughts!

-Ell

It’s lovely and noble to work toward better services and infrastructure, but in reality all the funding and program development in the world isn’t going to make a 115 lb human weigh any less than 115 lbs. It won’t make 5 ft. become 4 ft. at the touch of a hand. The physical realities of caring for a severely disabled child are not going to go away by some sort of magic.

To fear that the practice of growth attenuation will become so widespread that it negatively impacts a minority of parents who don’t make that choice is to say the least a bit far fetched, if for no other reason that the medical technology being put into practice isn’t foolproof and must be very specifically applied on a case-by-case basis within a short window of time. It seems that opponents of the practice would have a stronger argument by challenging the safety and efficacy of the procedures, rather than focusing on the hypothetical effects on the rest of the disabled community. It sounds harsh, but a family ultimately has to make the best possible decision for themselves and few are going to be willing– if they even should be willing– to sacrifice their own best interests to mollify the opinions of those unrelated to their situation.

First, let me thank you for this terrific summary. As someone also lacking resources to travel to as many such events as I’d like, this was a very useful thing to read. I have a number of questions/comments for you:

1. Regarding the second questioner and the impetus behind new cases of attenuation, I am really confused by Dr. Diekema’s answer here. What does the safety and efficacy of the procedure as it was done in the 1950s have to do with the motivations of today’s parents? Was his point that we don’t need good reasons to attenuate growth because we know how to do it safely? If so, he clearly doesn’t take the proposal of “safeguards” very seriously.

2. Regarding the distinction between acts of omission and commission, I think it’s essential to a disability rights perspective and not at all an abstraction. How can we argue (as some of us do) that the best response to short stature is to modify the physical and social environment of people with “treatable” types of dwarfism rather than use human growth hormone therapy (this is in favor of omission) while simultaneously saying that it is wrong to attenuate growth (an act of commission with more or less the same result). We need to justify this in terms of the distinction between omission and commission, or else our position becomes completely incoherent. I think the thing to do here is to point out that motivations matter when it comes to this distinction, something the philosopher on the panel was dancing around. The big difference between these cases is a matter of why the acts of omission and commission are being proposed or opposed. The consistency isn’t in a constant opposition to a certain consequence, but in a constant opposition to a certain ideology or way of thinking that motivates that consequence.

3. What constitutes a “disability rights activist?” You propose that bioethics panels develop an adversarial approach and take on disability rights lawyers, but almost immediately seem to contract this and say that merely having a JD and arguing from a disability studies perspective was not good enough. I am confused about how you define activist? Do activists have to get arrested with ADAPT to be an activist? Do they have to themselves have a disability? Do they have to be volunteers rather than get paid for what they do? Do they have to work for an organization with a board controlled by people with disabilities? I agree that I found Miller’s arguments as you have portrayed them to be unsatisfying and disappointing, but on what grounds do we say he is not an activist and how do we call for a broader participation? Surely, we can’t say he doesn’t represent our community merely because we disagree with his conclusions.

Is it possible to get a transcript of the proceedings?