Monday, April 26, 2010

Conference Presentation

Here's my bit that will be presented at the conference on video:


My name is Claire Roy and I am the parent of a child with severe, multiple physical and cognitive disabilities that she acquired due to a brain stem stroke when she was six years old. Based on MRI readings and the expert assessments of a paediatric neurologist and a neurosurgeon, we were told she was brain dead by the end of that day, and a request was made of us to donate her organs.

Today, at 15, Sophie is still very much alive.

Despite categorical assertions by physicians that this would be impossible, she understands what is going on around her. She can talk and answer questions but not really converse. Academically, she reads and writes slowly at around a grade 2 level. She still recognizes her numerals but she can’t do math. She is very fond of boys!

Though it was expected that she would be fully dependent on a g-tube all her life, she eats three meals a day, snacks and drinks...her g-tube remains for some fluid supplementation and medication only.

She cannot walk or hold up her body...though she can hold up her head. She still has the g-tube and a VP shunt. She has severe scoliosis, contractures in both her legs and left arm. She cannot use her left arm at all, nor can she move her legs in any way. She has dropped feet. She is incontinent. She has moderate tone. She suffers from pharyngeal spasm whereby she will just suddenly and unpredictably stop breathing...something from which she must be rescued. She has tonic clonic seizures from time to time, usually in connection with the spasm. She must be under 24 hour supervision as a result of the randomness and silent onset of the spasms, so I sleep in a bed beside her every night. In general, Sophie is hypersensitive to stimulation, so going on trips to the mall or even outside can turn into a nightmare of sensory discomfort for her. She is currently about 5 feet tall, and weighs 60 lbs.

Sophie is completely dependent on her caregivers for every aspect of her life, be it personal care or stimulation. She is, in that aspect, just like Ashley...so no one can accuse me of not knowing “what it’s like” to care for a child with severe disabilities...an accusation that is frequently levelled at those who criticize anything about G.A...yet I and other parents of severely disabled teens and children (born that way) with whom I am in contact are completely opposed to the Ashley “treatment”.

As a focus for this conference I was posed the following question:

What would you have said to Ashley X's parents or a similarly situated couple, and to the physicians involved, if you were a member of the ethics committee that reviewed the case?

I would have said, “Don’t do it.”

There are so many things to say about this from a parent’s perspective! Unfortunately, there isn’t time, so I will address what are to me, two critical issues. That which makes me most uncomfortable with g.a is that everything about this hinges on the child’s level of cognition. This is highly problematic. Secondly, there is incessant talk about how all of this is about benefitting Ashley and children like her; I will argue that the real reason behind it is written between the lines by the major players in the push for g.a.

To begin, then, a word about cognition. My daughter’s original prognosis, based on MRI scans, was death or “at best” vegetable...by highly respected neurologists and neurosurgeons. Her CT scans show obvious and extensive brain damage. When you meet my daughter, however, it is clear that she is neither dead, nor a vegetable. Indeed, she has quite a few skills which she should not have. Most surprisingly, she has maintained her personality...which, we were told, would be gone, based on the severe damage to her frontal lobes.

Secondly, in addressing issues about cognition, I must introduce the concept of neuroplasticity,

“the revolutionary discovery that the human brain can change itself...Without operations or medications, they (scientists) have made use of the brain’s hitherto unknown ability to change.” Norman Doidge M.D, The Brain that Changes Itself, (New York:Penguin Books, 2007) p.xvii

Doidge has written an entire book describing people who were able to restructure their damaged brains (whether acquired at birth or via injury) to function optimally or nearly so through various exercises. Ashley’s doctors are obviously old school.

My point then: the assertion that Ashley has the mental capacity of a baby and that this fact will never, ever change, cannot hold up to current scientific scrutiny. First, brain scans of any sort are, obviously, poor indicators of actual cognitive ability. Secondly, Ashley’s complete inability to talk or manage her limbs, make it impossible to properly ascertain her cognitive status. There are many examples of cognitive ability being underestimated, the most famous of which would include Christy Brown (Ireland, My Left Foot) and Anne McDonald (Australia, Annie’s Coming Out). Third point: the concept of neuroplasticity indicates that the brain, when subject to stimulation, does indeed change and can indeed improve. It may be possible, then, to increase Ashley’s cognitive abilities via appropriate and consistent stimulation...as was the case with my daughter.

For these reasons I repeat, “Don’t do it”.

Having said all of that, however, how is it that cognitive ability is the sole benchmark for assessing human value or ascertaining human rights in this situation?

Consider this, from Ashley’s parents’ site:

Some articles fail to clarify up front that our daughter is severely disabled, in a small and extreme category of disability, leaving their audience with the image of a mildly disabled girl...which would indeed make the Ashley Treatment shockingly inappropriate . (Welcome to Ashley’s Blog, Update January 9th, 2007, #3, http://ashleytreatment.spaces.live.com/blog/ ) (emphasis mine)

The Ashley treatment, then, is shockingly inappropriate based on levels of cognition . My daughter went from being “normal” to being completely and utterly disabled, physically and cognitively, over a period of a few hours. One minute, then, the treatment was “shockingly inappropriate”... the next, “a new approach to an old dilemma”...? The rationale is quite straightforward; if you lose your cognitive ability, you are fair game for experimental treatments that someone, parent or expert, can impose upon you for your perceived benefit even to the point of ignoring established laws. In one fell swoop, I can say that my daughter’s right to bodily integrity was usurped by her decline in cognitive ability. Ladies and gentlemen, need I point out that this is very, very dangerous territory? Do you want to live in a world that can so easily dismiss your basic human rights? Is cognitive ability the only way to valuate human life? Is it not possible, too, that our assumptions as to what cognitive ability is, represent a far too narrow concept of thinking and thought processes? What do we truly know of the inner life of the severely disabled?

So I say it again...”Don’t do it.”

There is a great deal written about how this protocol is, in the end, all about helping Ashley (and children like her) have a better quality of life. They insist that those critical of g.a. are not facing facts and are, out of some knee jerk, emotional reaction, merely denying these children something that could really make their lives better.

I wish to argue that the good doctors have indicated by their very own words that the real benefit of the Ashley treatment is for society at large...

I want you to listen carefully to the next 3 quotes...

The primary benefit offered by growth attenuation is the potential to make caring for the child less burdensome and therefore more accessible. Diekema, Douglas, A., MD, MA and Gunther,Daniel F., “Attenuating Growth in Children with Profound Developmental Disability”, Arch Pediatr Adolesc Med. (2006) Vol. 160, p.1016.

“If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity...the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” Institute for Ethics and Emerging Technologies , “Helping Families Care for the Helpless”, George Dvorsky Nov. 6, 2006, http://ieet.org/index.php/IEET/more/809/


I also agree with the father’s observation that having her size be more appropriate to ‘her developmental level will make her less of a “freak” (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring...It reminds of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines. The owners hadn't noticed the problem until it was brought it to their attention. If children like Ashley could magically retain the appearance of an infant, they would not only be easier to care for in the physical sense, but the emotional reaction to them would probably be more favorable. (emphases mine) Scientific American: Christopher Mims, “The Pillow Angel Case: Three Bioethicists Weigh In”, Norman Fost @ 11:08 AM EST, http://www.scientificamerican.com/article.cfm?id=the-pillow-angel-case--th&page=2

In truth, then, g.a. benefits the caregivers by making their job less burdensome, it eliminates the grotesque view of “fertile” women with minds of babies and it will remove the scandal of having freak adults to look at, thus allowing society to more comfortably deal with the concept of cognitive disability.

Fundamentally, this is all about society’s...and, clearly, the medical profession’s...inability to deal with the sight of and responsibility for severely disabled individuals. There is nothing ethical about this treatment. It is just another example of discrimination...a surgical solution to society’s intense discomfort with disability.

And so I say to parents and doctors, “Don’t do it.”

My daughter was at one time a child like the majority. She became severely disabled. I love her no less now than before. I get no less pleasure from watching her grow up. As a matter of fact, her growing and changing into a young woman is a wonderful experience that I can say I share with all parents. It is her chance to develop into the person that she is...and she is a person, like we all are, with an inner life that I can only imagine.

Caring for a person with severe, multiple cognitive and physical disabilities is indeed very challenging. We parents are often tired. We are often pained and frustrated by the daily struggles for survival that our children face. It’s not an easy life...but it is worthwhile to work at providing for someone so vulnerable the best possible opportunities for their growth and development as very unique individuals. We are entrusted with these lives...just as all parents are entrusted with the lives of their children...and it is our duty and our fortune to take each day one at a time and protect them, care for them, honour them as they are, not as society wishes them to be. They have much to teach us and the world at large. Permanently attenuating the growth of these children is not an answer or a benefit. Our children are not “problems” or “dilemmas” to be mitigated. They are people to be reckoned with.

2 comments:

  1. Bravo, Claire. You have so ably summed up all the posts that you've written regarding this subject in a moving and very powerful way. I wish that many, many people could hear it, could read it, could learn it. Do you have any plans to have it disseminated?

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  2. This is super, very clear and concise. I know you could write a lot more which would also be pertinent, but this is a super summary which helps people such as myself get there heads round the idea (sometimes I bamboozle myself thinking about the ethics of G.A).

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