Three recommended reads: Bill Peace on “Ashley and Me,” L Syd M Johnson critque of Jacob Appel on PVS and April Michelle Herndon on the “Magic Pill” Question

Ashley X, bioethics, blog recommendations, cure, glbt, Hastings Center, Our News & Commentary Blog, pvs, william peace

I’m extremely ambivalent about the Hastings Center.  The interactions I have had with this bioethics entity have been both cordial – and very limited.  Periodically, the Center seems to take an interest in hearing something from disability advocates and activists, but after they’ve engaged in a small token effort, move on and appear to be pretty much oblivious until the next time they do a token event/seminar/workshop.

Nevertheless, I go back periodically to the online Bioethics Forum, because I occasionally find articles on that section of the website that are relevant to NDY and/or disability rights.  Right now, the Bioethics Forum is featuring three articles that all have relevance to NDY’s mission and/or to disability rights – even though only one of the articles is written by a disability rights activist.

Going from the oldest to the newest:

Ashley and Me was written by William J. Peace, a name that should be familiar to regular readers of this blog, since we’ve excerpted or pointed to his Bad Cripple blog numerous times.  Bill’s essay on the forum is about Ashley X. – the pseudonym of the young girl who was subjected to surgical interventions to stunt her growth and prevent the changes that come with puberty. Here’s an excerpt from Bill’s essay:

When I first read about the Ashley treatment in 2007 I was stunned and angry. How could parents and doctors implement such a radical intervention? Today my outrage has been replaced by a sense of discomfort and vulnerability. Beyond my personal feelings, I think the Ashley treatment is critically important because two extreme views exist that have become entrenched.

The doctors in Seattle who initiated the Ashley treatment, and its proponents, firmly believe they have helped one child and potentially many more. In contrast, many people with disabilities, like me, consider the Ashley treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require?

Withholding Care from Vegetative Patients: Financial Savings and Social Costs was written by L Syd M Johnson.  Johnson takes on a recent Huntington Post essay be Jacob Appel, who specializes in polemical pieces under the twin titles of “bioeticist” and “medical historian.”  Earlier this year, one of his other Huntington Post pieces was critiqued on this blog.  Excerpts from Johnson’s essay:

In a recent column in the Huffington Post, Jacob M. Appel argues for “rational rationing” of health care resources by withholding and withdrawing life-sustaining medical treatment from patients in a permanent vegetative state. He considers the case of Ruben Betancourt, which will soon be decided by the New Jersey Superior Court in Betancourt v. Trinitas Regional Medical Hospital

***

Appel argues that physicians and hospitals should withhold or withdraw care from permanently vegetative patients, because such care is costly and diverts money and medical resources from more worthwhile patients and endeavors.

***

First, and most importantly, there is a widely acknowledged problem of misdiagnosis in disorders of consciousness, which include the vegetative state. It is estimated that more than 40 percent of patients currently diagnosed in a permanent vegetative state are instead in a minimally conscious state – that is, they may be conscious, albeit to a limited degree. Clinicians and researchers are working to improve diagnosis, but at present it remains extraordinarily difficult, even for experienced neurologists, to distinguish between the vegetative and minimally conscious states.

Given the uncertainty, we should not be so quick to jump to conclusions about the irreversibility of a vegetative state. How quick would we be to terminate life support for patients with other conditions if there was a four in ten chance that they had been misdiagnosed? Regardless of the decision of the Betancourt court, any legal guidelines on withholding and withdrawing treatment from permanently vegetative patients will be meaningless – and potentially unjust – absent the ability to accurately and with medical and legal confidence diagnose patients.

The “Magic Pill” Question was written by April Michelle Herndon.  If you don’t recognize the reference, the “magic pill” question is about one would take a pill that would change that which makes you “different” – people with disabilities get posed this question quite often.  As Herndon points out, so do other marginalized groups in society:

“Would you take a magic pill to make yourself straight?” That question came from an audience member at a recent panel discussion at my university, organized by the GLBT Faculty Committee and the GLBT Student Partnership, which aimed to educate the campus about the lives of GLBT people and their generational struggles. The panel discussion was part of a suite of activities leading up to our campus’s observation of the National Day of Silence. I wasn’t able to attend the panel, but those who did told me everyone on it said that they would take the magic pill, with one person adding that he’d like to take a whole bottle of those pills.

I wish I could have been on that panel to say, “No, I wouldn’t take a magic pill,” and to unpack the question. 
Discussions of GLBT people – even in the mainstream – often use what disability scholars have termed a “medical model” for understanding the struggles we face. The medical model, which presumes that being GLBT is something we “can’t help,” suggests our struggles result primarily from an embodiment rather than from social conditions. Further, the medical model emphasizes notions of choice versus innateness, with little room for frameworks that acknowledge both as possibilities. 

Herndon shares a list of things she would have said if she’d been there, among other things – the “pill” question and its history of being posed to disabled people: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4793&blogid=140#ixzz0tCwKjKS2
These are three very different pieces, but every one of them is worth the time spent reading them.  –Stephen Drake