The Roving Activist’s Blog

This came to me from Amber Smock, of Chicago ADAPT and FRIDA. Thanks Amber!

On Friday, January 18th, 2008, members of Michigan ADAPT struck back on the Ashley X issue at a huge lecture given by Dr. Douglas Diekema, the head of Seattle Children’s Institutional Review Board, which ok’d the treatment. Two of the organizers are past participants of the ADAPT Youth Summit—Theresa Squires and Shana Holet.
 
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On Friday, January 18th, 2008, after just 24 hours or so of frenzied planning (research, literature development, layout reconnaissance, trumpet calls to local troops, and alerting the media), the efforts of eight members of MI ADAPT culminated in a great and successful action in Grand Rapids, MI, at Calvin College’s the January Series lecture, entitled, “Love, Justice & Humility:  A Bioethicist Meets the PillowAngel.” Lansing ADAPT and Grand Rapids ADAPT joined forces (with encouragement from around the state) at the alma mater of Dr. Douglas Diekema, chair of the ethics review board at Seattle Children’s Hospital that approved what has become known as the “Ashley Treatment,” which stunted the growth of a child with mental and intellectual disabilities named Ashley in 2004.  In addition to the growth attenuation “therapy” from high doses of estrogen that fused her growth plates, thus stunting her growth, it was also decided for Ashley that she would receive a hysterectomy and have her breast buds removed, at 6 years of
age. These three procedures are often collectively referred to as the “Ashley Treatment” (a title that Diekema finds inappropriate and insensitive).

Although our group was small, we had barely a day’s notice of the event (two of our members were up until the wee hours of the morning copying flyers and settling final details), and the temperature was not even 20 degrees, we came on strong.  At a strategy meeting that morning, we decided that, because of our small numbers, our lack of time to do more in-depth planning, and given the fact that we were at a small, conservative college, our best approach would be to educate the public about the Disability Community’s perspective on the case. To do this, we would distribute flyers and ensure that we had a presence at both the lecture and the follow-up discussion.

As our caravan was unloading (contemplating changing our goal to getting this thing rescheduled to a warmer day), sharp-eyed but reasonably cordial Campus Security guards spotted our signs and made it clear that we would not be able to hang or tape signs anywhere or take them into the lecture hall with us, nor could we pass out literature indoors or in the walkway leading to the entrance of the building. This was a slight snag in that holding signs and passing out flyers in the frigid and windy weather would be rough, but in true ADAPT form we were not deterred!

In general, we were well received. In fact, two professors of Disability Studies (one with a significant physical disability), and a few other people, expressed how grateful they were for our presence and thanked us for “fighting the fight.”  With members at every entrance and two people in the main lecture hall (we had only planned on one going inside for the whole lecture, but the wheelchair-using professor of the Disability Studies
class–which is currently studying ADAPT, by the way!–became star struck when he found that he was actually talking to “the Weasel” and insisted that Weasel go in as his special guest), we distributed almost 600 flyers and had several good conversations with the public AND the media! (Apparently, a short blurb was on a regional Grand Rapids television station–Wood TV 8.)

As the crowd arriving died down, we all decided to watch the presentation in the overfill room. Dr. Diekema spoke on the medical facts of Ashley’s case and how the ethics committee came to its decision. We were surprised at how technically he spoke of Ashley and how he said nothing of the social implications of these procedures. At the conclusion, members of the audience had a short opportunity to ask questions of Dr. Diekema. We were fortunate that one of the two questions asked came from one of our members, Joe Stramondo, who challenged him to explain why Ashley’s parents and the
committee opted for such extreme, irreversible medical procedures rather than use personal care services, durable medical equipment (i.e. a hoyer lift) and other such supports. Dr. Diekema appeared a bit flustered at the suggestion that this decision was driven by social stigma and eventually had to admit that these other options were rejected merely because the parents did not want to use them.

Following the lecture was a guided discussion sponsored by CALL (Calvin Academy for Lifelong Learning) that was facilitated by Dr. Ronald Hofman, a pediatrician and friend of Diekema. The participants of this discussion included members of the medical community,
Dr. Diekema’s brother (who had a slight, visible physical disability), citizens who clearly fell on both sides of the issue, and two mothers of multiple children with significant disabilities, whom the facilitator had planted from among his own patients. Our members packed the back of the room. It was obvious by both the setup of the room and the initial direction of the “conversation” that they were not expecting us or our perspective. 
Hofman was clearly of the opinion that the team of bioethicists who signed off on all three of the elective procedures requested by Ashley’s parents (growth attenuation, uterus-removing hysterectomy, and breast bud removal), had NOT overstepped any moral line in the sand in terms of the autonomy, value, bodily integrity, and equality of the patient in her original, natural state. The comments of ADAPT and a couple of other people in the audience made clear that this line drawn by Ashley’s inherent rights as an 
individual human being (regardless of her doctors’ certainty that she would always remain the mentally functional equivalent of a 3-6 month old child), was the heart of the matter and the reason to hold such a conversation, rather than the emotion diffusing “how did it make you feel” questions and the “that’s a very reasonable reaction” responses. 

We did not allow the topic to be coddled or the audience to be lulled to sleep. We were the voice of reason that encouraged others to express their doubt. We know this to be true because we were told so afterward by those very people. To the facilitator’s credit, he rode the wave we created quite well, calling on the “folks in the back of the room” as readily as anyone else in the audience, though this was surely to retain decorum and control, certain that we would make our points whether called on or not. About that he was right, and with good reason because our points were good.

ADAPT’s perspective on the issue is right, true and clear: Ashley X is a real person and denying her the right to be all that she can be (even in the name of providing love and care) is wrong! These operations were elective, in no case alleviating any certain discomfort of Ashley’s.  Numerous alternatives existed and were rejected for non-medical reasons. Ashley would live with the decisions that were made for her parents’ convenience long after she no longer lived with those parents. (That point, made by Ian Engle, got his words, picture, and angle into the Grand Rapids Press the next day!) 

Parental convenience (choice) OVER personal autonomy (choice) is the same as money over freedom (i.e. institutional care over choice, Kevorkian’s “understanding” of the woes of his patients over the treatment and support they deserve, or Nazi Germany’s “solution” over the lives of so many millions of innocent people). The fact that Ashley cannot express her choice does not constitute forfeiture of her right to have one. 

Please, do not mourn, ORGANIZE!!! – Theresa Squires, Melinda Haus-Johnson, Laura Hall, Teresa Christmas, Shana Holet, Joe Stramondo, Ian Engle, and Clark (the Weasel) Goodrich 

ADAPT’s voice needs amplification.  Be proud, get Loud! Lead On!!! 

Lansing ADAPT/Grand Rapids ADAPT 

RA’s note: I sure am proud of these two young wonen, as well as the Michigan folks. What an amazing action! I hope to meet Theresa and Shana in Washington, DC this spring.