This guest post has been written by the author of the blog "Single Dad/ Disabled Daughter." A short bio follows this post.
Since 2007 there have been many discussions around a set of medical procedures that, when combined, are called “Growth Attenuation” (GA) or the “Ashley Treatment” after the first patient known to have received the “treatment.” The procedures are done on severely disabled children (mostly girls) with the intent of stopping them from growing. In Ashley’s case, additional intents were to sterilize her, remove her breasts, remove her appendix, and more. Some defenders of this treatment are nurses, lawyers, and philosophy professors (or all three at once … see The Ashley Treatment - The Philosophy and Ethics of Growth Attenuation on this blog). Many of the treatment supporters, and parents who have approved the treatment, often say things such as “If the people who cried out the loudest in a negative way had any clue what it is to care for a child like Tom, like Ashley, they would not say the horrible things they have accused Ashley’s family of,” [i] Allow me to introduce myself. My nom de plume is Single Dad of the blog Single Dad / Disabled Daughter. Pearlsky will soon turn 20, she is severely disabled, non-mobile, non-verbal, has absolutely no known means of communication, and is totally and completely reliant on her care takers. Since there is no communication, her cognitive level is unknown. She is one of the first ever diagnosed with her specific genetic defect, nothing is known about her future, at any point in her life, which is a nightmare her family shares with others who are dealing without a diagnosis. I am her primary caretaker, and a single parent. My son, similarly disabled, is 17 and in a residential facility.
I know what raising these children is all about. I know from 20 years experience. And yes, I can talk about Growth Attenuation, about the Ashley Treatment, from as strong a point of view as Ashley’s parents and the other parents who have chosen to mutilate their children. My daughter is fully grown, over the weight where I can or should physically lift her, she is large breasted (only mentioned because Ashley’s parents feared this and subjected her to a mastectomy at age six rather than in the future have her need a “supportive harness” for her breasts[ii] – something the rest of us call a “bra”), and yet, she is cared for lovingly and with minimal difficulty. I am single, I own a small company, and yes, I care for a fully grown severely disabled woman, my daughter.
Note that contrary to what other articles say, there are no legal questions about the original Ashley Treatment. The hospital has publicly admitted that the parts of the treatment were clearly illegal [iii] The doctor committed suicide soon afterwards so his input into the controversy is not available.
There are ethical and moral questions which will be argued for a very long time. My interest is in the individual cases and why the children are subjected to the procedure. Ashley’s parents have a website (www.PillowAngel.org) which gives their side of the story, and you can see a fascinating rebuttal to their key points at this site, www.AshleyTreatment.info.
To understand the issues, one must look at the core arguments. In Ashley’s case, the treatment “improves Ashley’s quality of life” and “makes it easier to care for Ashley” [iv] How does one talk about the future quality of life for a young girl who is undiagnosed and how is it known how difficult care will be? By definition, “undiagnosed” means the future is unknown, as is much of the present.
Having a severely disabled child changes one’s life. In almost all cases, the situation is a complete unknown. You find yourself in a situation where you know nothing. This is a child like you have never encountered. Your own child is not like you, nor anyone or anything you know. The literary term for this is the Other.
There are two concepts that are important in the on going discussions of GA as well as the lives of the severely disabled in general.
The concept of the Other is important and pervasive in social science. It is what it sounds like …
The Other is an individual who is perceived by the group as not belonging, as being different in some fundamental way. Any stranger becomes the Other. The group sees itself as the norm and judges those who do not meet that norm (that is, who are different in any way) as the Other. Perceived as lacking essential characteristics possessed by the group, the Other is almost always seen as a lesser or inferior being and is treated accordingly. The Other in a society may have few or no legal rights, may be characterized as less intelligent or as immoral, and may even be regarded as sub-human. ~Prof. Lilia Melani, Brooklyn College –read more here
So, fundamentally, if you are not “us,” not like us, you are the Other. We are able-bodied, you are the Other. We can communicate, you are the Other. Obviously, the distinction is used in many other ways than the theme here … We are white, you are the Other; We are straight, you are the Other ...
Then we have the concept of dehumanization.
Taken to its extreme, we get the Nazi concept of “Lebensunwertes Leben” or “life unworthy of life.” Just about every war ever fought relied on the concept of dehumanizing the enemy, the Other. You can exterminate the dehumanized Other, for they are not you and equally if not more importantly, they are less than you.
Two distinct categories for those we do not want, the Others (those who are not us) and the less than human, non-persons (dehumanized). The enemy, the cripples, the retards, the slaves, the disabled, the pillow angels, and the rest.
Take the case of Terri Schiavo. She was in a category of those persons who cannot speak for themselves. Her autopsy confirmed she had extensive brain damage, as argued by her husband as justification for his determination to remove her feeding tube after years of a vegetative state. For whatever (political?) reasons, the government fought to be the voice of this individual, but treated her as an Other. The government decided she needed special government intervention, superseding the wishes of those normally charged with her care (in this case, her husband, her legal guardian). Even her own desires, as determined by multiple courts of law, were ignored, for she was a helpless, speechless Other, one to be exploited.
The court determined that she had made “credible and reliable” statements that she would not want to be “kept alive on a machine,” based on expert testimony … In this decision, the court found that Schiavo was in a persistent vegetative state and that she had made reliable oral declarations that she would have wanted the feeding tube removed. ~the court order
Despite all of this, the Florida Legislature, in emergency session, passed “Terri’s Law.” This gave Florida Governor Jeb Bush the authority to intervene in the case. Gov. Bush immediately ordered the feeding tube reinserted. The US Congress tried to intervene in the same manner as well. The government, acting as the all knowing parent, took control.
So who is, or should be, the voice of the Other when the Other has no voice? How are they perceived and who has the right to speak for those who cannot speak for themselves? What do we do when the only voice of the Other dehumanizes that person or the group?
My daughter has no voice. There are times when even I cannot speak for her. I have been stopped from preventing her academic testing under the No Child Left Behind laws when a “typical” child can refuse to take such tests (as upheld by the supreme court of our state). Hence, my daughter has fewer rights than normal children in our state, and I cannot speak for her in these simple “civil” instances. Yet, I am her father, her guardian, her only voice. I continually demand she be treated with respect, as the young lady she is, that others see her from her point of view, whatever that may be. See her as one who deserves the same legal, ethical, and civil rights as everyone else. Why can I not substitute my voice for hers, even though her’s is silent?
Ashley’s parents have dehumanized her in the public eye by using such terms as “pillow angel,” a meaningless term combining two friendly words. Ashley, as well as my daughter and thousands of Others like them, is a person, not an angel (nor a pillow, nor doomed to a life decorating one). Ashley was an undiagnosed young lady with rights, human and civil. She was placed in two categories, dehumanized by those around her, and, due to her medical state, she is the Other.
More baffling is the case of Tom[v], the only male known to have been subjected to the procedure. Tom’s adoptive mother gave two reasons for the subjecting him to the treatment. “Children like Tom are difficult to carry around,” she said because “they are so strong and the muscles are so tense. A child weighing 25kg seems to be the weight of three because of the muscle spasms” and “But, after discussing GA therapy with the doctor she felt that experiencing puberty might be too upsetting. As an infant, for example, Tom always became very agitated when having his hair cut; she worried trimming his beard may cause him similar distress.” Most disturbing are her discussions with the doctor, who had never done this before. “Many of Tom’s mother’s questions to the doctor went unanswered...”
“I asked him about the medication, will it cause more seizures, will it affect him falling asleep, will it affect his feeding issues? He had to repeat himself, saying, ‘I don’t know, I don’t know’.”
But the endocrinologist assured her it was safe and, when he treated children who were too tall, he never had complications.
Her main worry, she said, was that Tom might develop breast buds, a potential side-effect of using estrogen. But the doctor said if that happened, they could operate to remove them.
What was the thought process here? The mother did not know if the hospital ethics committee even approved of the procedure before it was performed. She seems to not care what the side effects on her son would be, as long as he did not grow breasts.
Why would a mother do this? On how many levels is Tom the Other?
To further her argument that this is acceptable, she states:
“Those people who reacted the most harshly were [self-aware] disabled people. They are aware of their rights. Tom isn’t. Ashley isn’t. Somebody has to make decisions for them and who better to make that decision than the parents who love the child.”
Look at what she is saying. The people who think this is most abhorrent are “self-aware disabled people.” The closest analogue we have to Tom or Ashley specifically are “self-aware disabled people.” We cannot ask Tom or Ashley or Pearlsky if it is okay to surgically and or chemically change / alter / mutilate them, but we can talk to some severely disabled people who can communicate, people as close to Tom or Ashley or Pearlsky as we can get, those who do have communication, and you know what? They react “most harshly” to this procedure, according to this mother. Where are the words, the voices, of the disabled who can communicate, saying “Please do that to me?” So what does she do? She does it to her son anyway.
The decision to perform growth attenuation should be a difficult one, but that does not always appear to be the case. Here you had Ashley, a young girl that everyone perceived as the Other. As in Ms. Schiavo’s case, outside parties thought they knew what was best (for her? for her caretakers?), to the point of illegally sterilizing Ashley, among other procedures. Ashley was undiagnosed, her future potential was unknown. Ashley’s rights, the rights to her body, the rights given to her by god and country, were violated by both her parents and the medical establishment. Furthermore, when it was determined that she was illegally sterilized (since no mandated court order was obtained), what was the penalty? There was none. Why should there be? Here is “one of them,” a “pillow angel,” an Other, a “non-person,” not deserving of basic human and civil rights. Tom’s growth and future were completely changed due to a doctor who admitted knowing little, and a mother with misplaced fears.
I cannot stop my daughter from taking an exam in high school, yet Ashley’s father can (and does) propagate horrible propaganda justifying the unthinkable, medically altering a fellow human being with an undiagnosed future and no voice. And he was allowed to do this. My daughter, Pearlsky, was very much like Ashley at the same young age, to a scary level of comparison. Today, Pearlsky is a young woman, well cared for, has a good quality of life from her point of view, and her body is intact. Ashley is in a modified body, legally and illegally modified, and to what end? Is she better off than Pearlsky? Or is the real question, are her caretakers the ones better off than I am?
Ashley and Tom were victimized. This is what we do to the Others, in war, in peace, abroad, and most horrifically (if not most baffling), at home. Their undiagnosed potentials have been modified if not destroyed, for they are the Other, and it is deemed acceptable.
It is currently illegal in parts of Germany (a modern civilized nation) to circumcise young boys. A June 26, 2012 ruling by a Cologne court that equated the practice with inflicting bodily harm on boys too young to consent. Boys may consent to the procedure after age 14. Yet we mutilate young children in much greater and grosser ways.
I am not against all procedures to improve the life of the severely disabled. My own daughter suffers from seemingly severe menstrual cramps and I am in discussions with doctors about the best way to alleviate this. Should she just deal with hot water bottles, OTC pain relievers, and do it as the vast majority of women do? Should she be on the pill to eliminate or mitigate her period at the risk of bone density issues (being wheelchair bound makes this a very big issue)? I cannot perceive of her ever using her uterus for reproduction, do I allow surgical modifications at this point? Note, she is not six, we are not guessing that she will have difficult periods, she is 20, we know the situation. I am open to the discussion.
And why, pray tell, is this procedure overwhelmingly done to girls and not boys when boys grow so much bigger and stronger? Girls undergo multiple, mutilating surgeries, boys take hormones.
My daughter will not be alone as the Other.
Two thousand years ago the proudest boast was civis Romanus sum [I am a Roman citizen]. Today, in the world of freedom, the proudest boast is ‘Ich bin ein Berliner’… All free men, wherever they may live, are citizens of Berlin, and, therefore, as a free man, I take pride in the words ‘Ich bin ein Berliner!’ ~John F. Kennedy, West Berlin, 1963
I am my daughter’s voice. She is not the Other. She is me, I am her. And no one will determine her future, no one will dehumanize her.
Ich bin ein Other.
Single Dad is a father to two severely disabled children, part-time voracious advocate, small business owner, geek, professor, and all around god-fearing heathen. He blogs about life with his daughter here. It is said (way too often) “The Lord only puts on your plate what you can handle.” So, if he were a weaker person, would his kids be normal?
Notes and References
[iii] http://www.seattlechildrens.org/media/press-release/2007/05/002039/ “Unfortunately we failed to assure we had a court order authorizing us to proceed with a hysterectomy or removal of Ashley’s uterus, as we should have. This was an internal miscommunication which resulted in a violation of the law, and for that we take full responsibility.”