6 Years Old, Forever.

A Pillow Angel

Recently, Bill Peace, writer of the blog Bad Cripple, visited my blogging class and brought many things to the table that I have not been able to settle in my mind. Among these things was the practice of growth attenuation, which will be the focus of this post. For more information regarding Bill Peace's personal views on this topic refer to his blog post.
DISCLAIMER: Unfortunately, I personally do not feel that I possess enough knowledge in ethics, or disability rights to present an academic opinion on this topic. However something in my stomach opposes it's practice, and yearns for it's denial in mainstream culture. Because of this, I feel that it is appropriate to present a plethora of information from a variety of sources (both in support and opposition) in hopes that the reader will come to the same bridge I have found and crossed on the topic. 

Growth Attenuation: "is an elective medical treatment which involves administering estrogen to cause closure of the epiphyses of the bones, resulting in a reduced adult height". 

Growth attenuation, now also known as "The Ashley Treatment", was widely popularized and publicized by news coverage of Ashley X, a child born in Seattle in 1997 who underwent this procedure. Beginning just after Ashley's 6th birthday, her parents opted to begin the treatment, flooding her with estrogen over a period of three years, accompanied by a hysterectomy and breast bud removal. Here is a blog for Ashley prepared from here parents. Ashley is called their "Pillow Angel" "because she always remains where she is placed, which is usually on a pillow".
Talk of this procedure consequently led to many medical and ethical disputes, none of which have be completely resolved.

OPPOSITION:
What are Ashley's rights as a child, how about as a disabled child? Need they be different?
In 2009, Alicia R. Ouellette publish an article titles :

GROWTH ATTENUATION, PARENTAL CHOICE, AND THE RIGHTS OF DISABLED CHILDREN: LESSONS FROM THE ASHLEY X CASE

This outlines the legal underpinnings of this controversy. Ouellette provides strong support for children's rights and presents the thoughts of the Children's Hospital's ethics committee on their decision to allow it (page 213).

APPROVAL:
In 2006, Gunther and Diekema published a scholarly article titled:

Attenuating growth in children with profound developmental disability: a new approach to an old dilemma.

which argued that:

Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home

OPPOSITION:
In a position statement from the American Association of Intellectual and Developmental Disabilities (aaidd), they labeled growth attenuation as "Unjustifiable Non-therapy", presenting their opposition on the terms that "We as a society should be supportive of innovative approaches to treatment, but we should also demand a thorough evaluation of potential benefits and balance these against carefully considered risks". In their statement, the aaidd announces  that they strongly disagree with the Gunther and Diekema publication. The aaidd presents their statement in a response to this publication, outlining their statement with three major bullets:

"We offer this updated policy statement with a brief review of their proposals, followed by three main arguments against adopting them as policy".

• The first argument deals with the lack of solid evidence to support their position 
• The second argument deals with the way in which they have inappropriately framed their ethical arguments within the current bioethical standards  
• The third argument addresses the larger issue of idea ethics and respect for autonomy related to individuals with IDD. 

APPROVAL:
Here is a similar case to Ashley X, a child from New Zealand named Charley.
Charley girl

Bill Peace, Lemony Snicket, Digital Commons

source

You might be asking what these things have in common, and the answer is Tuesday October 30th.

During our Digital Commons class, Bill Peace gifted us with his presence and during the opening 5 minutes Lemony Snicket was referenced, SO I thought it would be fun to run with that and express Bill's words in my words through Lemony Snicket's words.  

“Appearance matters a great deal because you can often tell a lot about people by looking at how they present themselves.” 
― Lemony Snicket, The Miserable Mill

As Bill entered the room I noticed something something peculiar, he was floating, much like Professor Charles Xavier. Ok.. well maybe not, but he was definitely hovering (most likely because of the quality of his wheelchair which I have come to learn is not by any means an affordable piece of equipment). As Mr. Peace settled in with his dog Kate, and began to talk, I had an epiphany. And as I had this epiphany, I flashed back to previous speakers who spoke on the behalf of the "disabled". One word comes to mind when I now recall these experiences:

Pietrisycamollaviadelrechiotemexity ― Lemony Snicket

The state or condition of not having the faintest idea what's going on.

It's unfortunate but it's true. When people speak of the disabled they leave out a lot of the things that need to be said (possibly to remain politically correct?). This is where Bill comes in, sometimes to get things done (i'm talking to you government), you need to take them into your own hands. 

As Bill often stated, presenting someone as being less abled should not devalue someones life. In fact need it even be mentioned? Also in fact, Bill is much more abled and well seasoned(mentally and probably physically) than 99% of the people I know...  Rights for the classifiably "disabled" should not be an argument, in fact they should not even be discussed. Let's put this in perspective; in 2002, an "estimated 1.6 million americans residing outside of institutions used wheelchairs". This is not including people that are temporary users (traumatic incident, surgery etc) is it okay to not properly allow these people access to public buildings, as Mr. Peace frequently documents in his blog? No? In fact it's just common sense to do so. 

“Troublesome things tend to remain troublesome no matter how many times you do them.” 
― Lemony Snicket

Maneuvering into a building should not be a hassle for anyone and as Bill stated, (not sure if it was his quote or someone else's and i'll paraphrase) "everyone is only temporarily abled, anyone can lose that privilege".

In the pile of Bill's stories, one hit home. Bill spoke fondly of his childhood and often praised his parents for not giving him the easy road. But what most he admired of his parents was their drive to raise contrarian children. Stating that often at dinner his dad would ask him and his siblings what one question they thought of was while learning at school, a similar question to what I was raised on.

“Uncle Monty smiled at the orphans. 'That's quite all right,' he said. 'Questions show an inquisitive mind.” 
― Lemony Snicket, The Reptile Room

It is incredible the lengths Mr. Peace has gone not for himself but for others. If you want to be like Bill Peace, try to be like everyone else. Because thats all he wants; to be a father, to be a middle aged white man, to not be harassed for being less mobile, and to not be looked at as an ax murderer when he questions your ability to follow ADA regulations.

It's truly a shame Bill even has to waste his time on issues like these, I can imagine the issues Bill would be tackling if he didn't have to worry about things that should be non-issues.

My Bill Peace encounter: 9.4/10.