Thursday, August 29, 2013

The Body Institutional

E.P. Reading through the testimonies, many families talk of their grief at having to put their grown-up children into a disabled people's institution after it became physically untenable to care for them at home. That strikes me as another kind of violation of human rights.

A.D. (Ashley's dad) ...We hope that the treatment will increase the chances for "pillow angels" to stay at home surrounded in the loving care of their families. Institutionalization is no way to live, for many it is the only alternative and yes, you're right, institutionalization is a form of human rights violation, especially when treatments exist to make institutionalization less likely

Ed Pilkington

Much can be written about this particular excerpt from the 2012 email interview with Ashley's father. There is the irony of Ashley's father's deep concern for the human rights of those with severe disabilities being institutionalized, all the while plugging the Ashley "treatment" like a salesman. There is the appalling oversimplification of the complexities involved in the decisions parents make to put their disabled children in out of home care. There is no social analysis as to why institutionalization is "bad". Most offensive, though, is the implication that parents who DO choose this option for their child or adult child are somehow violating that child's human rights.

Without even intending to do so, however, the mention of the Ashley treatment and her parents' assumptions about institutional care in the same breath allows for an intriguing comparison. Just how different is Ashley from an institutionalized individual with severe combined disabilities?

One might expect that Ashley's parents have not ever visited any care facility of any sort but at the same time that they hold certain ideas about institutionalized care. Typically, though, they likely believe such care involves removing the child from the familial milieu to a distant (possibly dismal) building far from the public eye, and setting them up in a group living arrangement where routine reigns supreme to the detriment of individual privacy, expression and choice, where the least amount of work expended on care is considered ideal. At best the care is "good": at worst there is abuse. By the way Ashley's parents constantly hold the "threat" of institutionalization over their own and the heads of all other parents of children like Ashley's, one can surmise they hold the most negative scenario in mind. They see it as a terrible separation from family life and where there will likely be neglect from inadequate care. One is painted the picture of an Amazonian sized and buxom Ashley, full of bedsores, isolated and left to languish on her now-too-small-for-her pillow.

But in truth, look what subtle similarities do exist between Ashley post "treatment" and life in an institution as intimated by her parents. By holding firmly to the view that Ashley would never change and always be "an infant", her parents established a rigid rule over her potential development, likely underestimating what is and could be possible for her. Ashley has been separated from her family, (and particularly from her sister) not by being removed from the home, but via a series of procedures that limited her size and removed all indices of her femaleness. She is isolated by virtue of the "treatment" that prevents her from doing what other children do: grow up. Her freedom of expression, again, to grow and develop intellectually into what a full-grown Ashley would be, has been compromised. Her privacy has been invaded via the media fury that her parents continue to subject her to, and her bodily integrity violated by the very act of removing her uterus and breast buds. Her parents have chosen to bow to a medical view of Ashley's disabilities, thus making Ashley the problem rather than the society that prefers not to support her or their efforts to care for her. They even assert that making her easier to care for was one goal of the "treatment": how nice and easy to put her on a pillow where she might stay for a while. "We call her our Pillow Angel since she is so sweet and stays right where we place her—usually on a pillow." (from HERE)

On the whole, our society much prefers people with disabilities to be out of sight and out of mind. Growth attenuating and surgically altering these individuals reflects this bias still. There is no concerted effort on the part of "normates" to support and include the atypical body and mind. We seek to distance ourselves from human beings with severe disabilities because they make us uncomfortable. In the past, this was done by relegating all to institutions. Now, in this day and age, we can use the "Ashley Treatment".

Friday, August 23, 2013

Where does value lie?

The following is a segment taken from an email exchange carried out between The U.K. Guardian and Ashley X's parents in March of 2012.

We believe that the main value that Ashley's life has is in the context of being part of her family and her family's love, so we feel strongly about her continuing to be an integral part of our family.(emphasis mine)

     Ashley X's parents follow up this line of thinking with the unproven notion that keeping "Pillow Angels" small will keep them from being sent off to institutions, and kept in the family for a longer time.
     There are many things about growth attenuation that I can find fault with. It's easy to do. At the most basic level though, it is the perception of people with disabilities as somehow having to suffer through a checklist assessment of their place on the scale of humanity--as if there is one--that I find most objectionable. People with disabilities are always left to prove their worth, even their humanity, based on assessments made by "standard human type A", the walking, talking, right thinking, money making, socially acceptable homo sapiens. Deviation from the mean is deadly, in some cases.

And so to Ashley X's parents I say this: I have a typical daughter as well as one with severe disabilities. I do not find that "the main value" of her life lies strictly in the context of family life. Now, as a young adult of 22, she is on her own, trying her wings, living in her own little place with her own first "real" job. It is for her to move away from the family and be her own person, carve out her own place in life, find new relationships. Her life has value because she has life. She doesn't need to prove that to anyone.

The same is true for my daughter with severe physical and intellectual disabilities. She may always need support, here at home with me or in some sort of placement outside of my home, but her life has value. Period. She deserves to be seen as a person carving out her own place in life too. Her dependence does not make her a non-person, whose only value is based on the assessment of others around her. She is not a burdensome adjunct to my life or to life of her caregivers. She has a place. She has a mind, however compromised. She has ability, however subtle. I honour that. I expect and teach others to honour that too.

Sophie is real. She is a real, live person. She is a force to be reckoned with. She is not, nor ever will be anyone's Pillow Angel. 

Thursday, August 22, 2013


So...I am back to posting here at the Ashley blog. I have not done so in a very long time for many reasons. But with the "treatment" back in the news and more and more people being sucked into it's "value", it was time to get back in the game.

I have tidied up a few things, mainly, updated some links on the side bar.  I will add here that, in my view, the most definitive, superbly written case against the so-called Ashley Treatment was penned a while back (2011) by the formidable Dr. Eva Kittay, herself a parent of an adult child with severe disabilities. It is titled "Forever Small: the Strange Case of Ashley X", downloadable from HERE. This is by no means light reading, but it's the best I have read to date.

I have received comments, some supportive of the treatment, most of which were thoughtful. I remain steadfastly opposed to it for all the reasons I and others have written about throughout this blog.  It will require reading it in its entirety to get all the points, but I find that the Maryland conference articles that Bill Peace and I wrote best sum up the material, as well as my "'final word" essay. Find these HERE, HERE and HERE

There are those criticisms that claim I or others are attacking the parents and their personal decision on how to "deal" with their daughter Ashley. The fact is that it is the parents themselves who have put growth attenuation and by extension themselves in the spotlight. They did not merely make a personal, private decision; they set up a blog and actively promote g.a. as a choice for parents who have children with severe disabilities. As a matter of fact, they imply that parents who do NOT choose g.a. are the ones failing their children. That being the case, then, they opened themselves up to criticism...and to analysis of their motivations. For the most part, their blog is convoluted, subject to frequent updates and changes, the information badly organized, therefore making a solid analysis of the material they present difficult to do at best. However, it must be done. Between the blog and interviews, there are inconsistencies. Their dear friends Drs. Diekema and Fost, say one thing and they claim another. Assumptions and speculation are presented as facts...and there is still no rigorous scientific scrutiny of the procedures and of their outcomes. Laws protecting children with disabilities from forced sterilization are being ignored. Ashley's parents themselves continue to deny the fact that Ashley's sterilization was deemed illegal.

Another argument is that since it is perceived that Ashley and "her kind" don't know the difference, what harm can come of attenuating their growth and removing whatever healthy but potentially troublesome body part their parents choose to do away with? Well, that argument is akin to saying it's okay to rape a woman while she is drugged unconscious because she wouldn't know the difference anyway.

What saddens me most is that g.a. is directing people away from advocating for services for those with severe disabilities and their parents with false promises of "solutions" to "problems". Counselling for g.a. is set to begin when the child is three years of age. How many new parents have wrapped their heads around their new lives at that point? And where is the balance of having these new parents talk with those of us with more experience, those with disabilities, those with a different perspective than a purely doomsday attitude toward disability?

In any case, I will once again post here from time to time, mostly addressing issues the parents brought up in their 2012 email exchange with the Guardian. There are some really questionable lines in there that I would like to work through.

Stay tuned if you are interested. I will reply respectfully to all points of view, if they, in turn, are presented in a respectful manner.