Wednesday, September 25, 2013

No respite? Who is taking care of Ashley?

My focus of late with regard to the Ashley "treatment" has been to go over the primary material (whatever Ashley's parents have written) very carefully. It has been a revelation. Inconsistencies abound. Questionable statements are everywhere to be found. It is deeply distressing that families are being introduced to this "treatment" via the sloppy science and emotional blackmail put forth by the parents. I will be posting a detailed analysis about various topics introduced in the material, hoping to point out the deep flaws in thinking and information that exist in what the parents have put forth.

Below are a few quotes relating specifically to Ashley's care. I will look at them more carefully afterward.

Also, those that think a lift will do, simply have no clue. Any caregiver with direct experience can understand these points (http://www.theguardian.com/society/2012/mar/15/ashley-treatment-email-exchange)

Ashley could not be moved as frequently or be as included in family life, and we would
not experience the joy of being an intact family as often  (http://pillowangel.org/Ashley%20Treatment%20v7.pdf)

The main benefit of the height and weight reduction is that Ashley can be moved
considerably more often, which is extremely beneficial to her health and well being.
Currently, one person can carry Ashley, versus requiring two people or a hoisting harness
and ropes, should she have grown larger. (as above)

We are currently near the limits of our ability to lift Ashley at 65 pounds. Therefore, an
additional 50 pounds would make all the difference in our capacity to move her.
Furthermore, other than her Mom and Dad the only additional caregivers entrusted to
Ashley’s care are her two Grandmothers, who find Ashley’s weight even more difficult to
manage. We tried hard and found it impossible to find qualified, trustworthy, and
affordable care providers. (as above)

The quotes above relate directly to Ashley's physical care, specifically to the issue of lifting. Based on these quotes, one can surmise that a) the family does not have a patient lift in the house and b) that there are no caregivers outside of the immediate family and the grandmothers.

Here is what I wonder about:

Based on this information, prior to attenuating Ashley's growth, the family was "near the limits" of being able to lift her at 65 lbs. In the Guardian interview, the father noted that Ashley was, post g.a., 75lbs
* Are her caregivers, namely, Mom, Dad and grandmothers, still able to lift her?
* How long before the grandmothers, whom we can assume are in their 60's at the very least and who were already said to be having trouble lifting Ashley at 65lbs, will be unable to lift her because of their age? (Here too, I wonder where the grand fathers are, but it is possible that they are not alive).

* Has the family yet had to purchase the dreaded patient lift in order to transfer Ashley? 
* How do they bathe Ashley? My own disabled daughter weighs about the same as Ashley does and there is no way that I would ever put her in tub without the aid of a lift or a second person. It is possible, however, that they bed bath her, as I have done over the years with my daughter.

Now, here are a few other things that I find suspicious.

Parents categorically state that only they and the grand mothers are "entrusted" to care for Ashley and that no acceptable outside help could be found. 
*So, assuming the father works, then Ashley's mom is a stay-at-home mom and her ONLY respite is her mom and her mother-in-law?
* How often are these women called upon to assist in Ashley's care? 
* What will happen when they can no longer care for Ashley due to their age? That leaves Ashley's mom to care for her almost 24/7. Will they suddenly find acceptable help then?
* Do these parents take holidays on their own? If so, are the grand mothers caring for Ashley while they are away? 
* One quote implies that sometimes the family is not "intact", meaning they carry on with activities without Ashley. Are the grandmothers watching Ashley while the rest of the family is out?
* If the family takes holidays as a group, "intact", do the grand mothers come along also or does Ashley's mom do all the care giving?

What I am saying here is that I find it hard to believe that there are NO other care givers for Ashley besides the mother and the grand mothers, this many years into her life. It would presume that the grand mothers make themselves available on a nearly daily basis, or barring that, the mother is on her own a great deal with Ashley.  I suspect there is a certain fudging of the facts here. It is an entirely unrealistic scenario. Or that might explain why Ashley was always so bored...

On a final note: one quote refers to the "main benefit of the height and weight reduction" caused by g.a. Let's be clear here that g.a. does NOT guarantee weight reduction. It is possible, of course, for a person to be very small and quite heavy, even obese. Ashley's weight is determined solely by her caloric intake. How is this being assessed? Is Ashley getting enough nutrition to satisfy her hunger, or are the artificial weight restrictions placed upon her by her parents "forcing" them to reduce her caloric intake for the sake of weight alone?

To be effective, decisions to limit linear growth should be matched by commitment to limit calories sufficiently to maintain a relatively lean body habitus. (Growth-Attenuation Therapy: Principles for Practice, PEDIATRICS Vol. 123 No. 6 pp. 1556 -1561)


In conclusion, the quote above is particularly distressing, but when read carefully, all of what is being intimated about Ashley's care is suspect.

Monday, September 2, 2013

Eva Kittay on the Ashley "Treatment"

Below, I have copy-pasted a letter written by Eva Kittay from International Journal of Feminist Approaches to Bioethics (HERE), because these things disappear over time in the land of the 'net. Click on the link as to why it was written and to see the piece in it's entirety (I omitted the intro that detailed the Ashley "treatment"). As I mentioned earlier, in my view, Kittay is the pre-eminent anti-Ashley "treatment" writer there is to date. This letter is a good summation of her more complete work, to which I have a link in my side bar.


I am the parent of an adult with severe cognitive disability, and also a philosopher who has written on the Ashley X case.* Peter Singer published a response (March 16th, 2012) to the Guardian article, ‘Ashley treatment’ on the rise amid concerns from disability rights groups” by Ed Pilkington and Karen McVeigh (March 15th).  Peter Singer is a fine philosopher and has made extremely important contributions in the areas of animal rights and poverty.  His work on people with disability is less distinguished and is consistently disputed by people who live with the conditions of which he speaks.  I am astonished that people who know as little about disability as Professor Singer does are repeatedly invited to pontificate on the subject.  I am also perplexed when I hear the debate about Ashley X framed as one between cognitively able disability rights activists and the parents of children with cognitive disability.  I understand that many parents have contacted the parents of Ashley but, outside of my participation in the Seattle Children Hospital workshop discussing growth attenuation (to which SE Smith refers), I have yet to meet a single parent of very severely and profoundly affected individuals who has any sympathy for the procedure.
Singer begins by dismissing the attack on the Ashley procedure on the grounds that it is “unnatural,” pointing out that all medical procedures are unnatural.  But surely not all medical interventions are justifiable.  Some, such as lobotomies and forced sterilizations, we clearly recognize to be illegitimate.  The charge that the Ashley treatment is “unnatural” is at bottom, I believe, a protest against the purely instrumental view of our body that the procedure suggests.  Its proponents appear to value height for reasons that would not be of interest to Ashley, such as the higher income or status taller people attain.  But in fact we value our children growing because growth is normally a sign of thriving, and such thriving is part of a flourishing life.  We stand up my daughter Sesha, who is now 43, and are pleased that she is a tad taller than me.  Why?  Because we do.  Full stop.  It needs no further justification.  Similarly having breasts are not just to sexually attract a male.  They are part of what it is to be female and a being with sexuality.  Do we really know that Ashley will never have a sense of herself as a sexual being?  After all the hormones continue to course through her body.  We have no access to or knowledge of the subjective life of people with the disabilities that Ashley has.  How can we presume to act on the supposition that we do?
Consider another supposition at play: that Ashley “will always have the mind of a baby.”  My daughter, who I will guess is no more cognitively able than Ashley, is now an adult woman.  Yet over the years, she has come to focus on different things and her tastes have changed.  She now enjoys listening to Michael Jackson, Bob Dylan, Beethoven, and Louis Armstrong, and no longer Barney or Elmo.  She, as well her equally disabled housemates, has demonstrated profound sorrow when told of the death of a beloved family member and much else that far exceeds what a baby or young child can comprehend.  They may not be able to function beyond the level of a year-old child, but their understanding far exceeds any such age limitations.  Ashley will not remain at the “mental age of a three-month old” no matter how impaired her cognition is.  We develop in many ways that are not coordinated with a set of tasks that we can or cannot do.  The brain, no matter how impaired, remains a dynamic organ, not a static one.
The “Ashley treatment” is defended in the case of folks like Ashley because it is limited to those who are severely cognitively impaired, and that is because their care is so demanding and their families hope to keep them close.   But there are many sorts of disabilities that make people extremely difficult to care for. The Ashley Treatment is the only medical intervention for which severe cognitive disability is the sole and necessary indication, even though there are many populations who make similar demands on caregivers.  The most plausible explanation for this exceptional treatment is that those who believe the treatment is justifiable but only in the case of this population is that this is the only population that “will never know the difference anyway.”  But why should we think that they will not know the difference? How can we be so sure? And what else can we do to this population because “they will never know the difference anyway?”  Why bother to shower these individuals separately, rather than march them naked to showers and hose them off?  (This was standard procedure in State institutions such as Letchworth Village and Willowbrook.)  Why keep them in cages which we can move around from room to room.  That too would allow us to keep them close to the family?  There is a long list of horrors that have been justified on the assumption that these folks “don’t know the difference anyway.”  Do we want to go down that road again?
Finally, the justification that this procedure allows people like Ashley to be better cared for and cared for by their families, is far more appropriately addressed by providing families with the means by which to care for their children at home as long as it serves the disabled person and the family well, and to provide safe, caring and enriching environments for them as they mature into adults.   As Dr. Jeffrey Brosco has put it, the Ashley treatment fails to do “justice to the scope of the problem.”  Again as Brosco points out, we don’t even know if size and good care are correlated, much less causally related.
The Ashley case should herald in a movement to secure better services, better equipment, and more attention to the needs of severely disabled individuals and the families who care for them.  Tragically our society fails to sufficiently reduce the unjust burden of their care and so impels the Ashley Treatment copycats to shrink their children instead.

*My work on the subject of Ashley X includes the following publications: “Forever Small: The Strange Case of Ashley X”, Hypatia, Summer 2011 Volume 26, Issue, 610-31; “Navigating Growth Attenuation in Children with Profound Disabilities: Children’s Interests, Family Decision-Making, and Community Concerns” Co-authored as one of the members of the Seattle Growth Attenuation & Ethics Working Group. Hastings Center Report, November 2010; “’They Don’t Know the Difference Anyway’: Dissenting from the Seattle Growth Attenuation and Ethics Working Group’s Compromise Position”, Hastings Center Report, November 2010; Whose Convenience? Whose Truth? A Comment on Peter Singer’s ‘A Convenient Truth’”
(with Jeffrey Kittay) The Hastings Center Bioethics Forum, Wednesday, February 28, 2007.

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
theguardian.com

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.
(http://www.theguardian.com/society/2012/mar/15/ashley-treatment-email-exchange)

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

Re-boot

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. 

Thursday, April 5, 2012

Growth Attenuation: my final word

Growth attenuation or the Ashley “treatment” is back in the news and in the blogs again. Only this time the outrage is fundamentally gone. Children are being subjected to this barbarism all over the world, slipping under the legal radar via deception and word play by doctors, lawyers, parents and so-called hospital “ethics committees”.

Parents and the rest defend their position by saying their choices are based on the “lesser of evils”, never once stopping to question why society is, without fail, providing we parents of children with severe disabilities only evils to choose from.

I will not mince words. There is no justification for this mutilation in any arena, moral, legal, health or otherwise. Parents are being lied to. This is no solution. The issues of constant care, lack of support, inaccessibility to the world at large, stress, pain, sexual and physical abuse of our vulnerable children are not addressed by this “treatment”. Cognition, that red herring that “professionals” and public alike seem to fall back on as the appropriate line to draw in the sand is so arbitrary, so narrow as to defy logic and even the most basic understanding of how the brain functions and acquires knowledge and awareness.

We are a stupid people, loathe to study and learn from our collective history.  We have burned the witches, strung up the niggers, gassed the kykes, lobotomized the crazies, beat up the faggots all in the name of what was right and good. We look back now, in horror at our primitive ancestors’ sins, and, failing to remove the mote in our own eyes, we're now on to the 'tards. Disability rights…especially the rights of those most severely affected…are the final frontier of civil rights action.  Sadly, I suspect a few more generations of dehumanization of our most vulnerable will pass before any sort of serious political action will take place to bring about real change.

And mark my words, the day will come when we see growth attenuation for the misguided barbarism that it is. On that day, be I the age of Methuselah, I will stand up and point my finger vigorously and without qualms say “I told you so.”

Saturday, March 26, 2011

Dear Ashley X...

Dear Ashley X,

This is not a personal note for you...but for all the Ashley X's being created out there.

I have found out that since the crass and self-serving advertisement of the "treatment" by a certain little girl's parents, and in spite of the fact that the hysterectomy performed on that little girl was deemed illegal (too little, too late), many doctors are now "quietly" performing this "treatment" at the request of parents. Many of these treatments are also being performed illegally, many of these are being performed on boys now too.

The tiny upside is that the mastectomy performed on the first little girl is not being performed on other little girls....the horrifying fact being that it is not medically necessary to attenuate growth and that the original parents live in depraved ignorance about the nature of sexual assault...Their daughter paid for that with her breasts.

Dear Ashley X, I am so sorry that my tiny little blog and the tiny little voices of others who understand severe disability have not been heard and that we cannot save you from your fate. We cannot save you from a world that doesn't value your personhood, a world that believes that the body parts on your severely disabled body and your chance to grow-up are not as important as it is to make it easy and cheaper to care for you. I am sorry for the belief that your type of cognizance does not match that of the majority, so, then it is perceived to be okay to irreversibly alter your body. After all, it has been deemed by others that you won't know the difference, and so, you won't care. The doctors and your parents have become mind readers.

And, dear Ashley X, I am sorry for your parents. I am sorry that they were "counselled" by the medicos that this is a viable "treatment option" for your disability. I am sorry that, only three or so years into their lives with you, that they have not had time to come to grips with what it means to have a child with severe disability beyond the work it entails. I am sorry that they will not be able to see you grow up and take pride in that, but that they were instilled with fear that your ultimate size would make you "unmanageable" and their lives more difficult.

I am sorry that your parents were likely lead to believe in utter falsehoods...that growth attenuation will ease or stop scoliosis, that it will make you less likely to have bed sores or contractures or pain. I am sorry that they were fed false hopes, that the doctors will make it seem that you will be much smaller than you will actually be in the end, because they are just guessing with statistics.

Dear little Ashley X, I am sorry that you live in a world that, no matter what size you are, will not provide adequate assistance for your parents to care for you. I am sorry that they will still have to do all the work required to care for another human being and that, no matter what your size, they may become tired and lonely and financially strapped. I am sorry that you may end up institutionalized and possibly given only minimal care. I am sorry that you live in a world that thinks you are a burden and that, really, you shouldn't be allowed to live in the first place. I am sorry that the genuine lessons you have to teach and love that you have to bring to this world are not recognized or valued. I am sorry that, the very fact that you were born and are living should be enough to make people care, but that it doesn't.

I'm sorry, Ashley X...I am so sorry.