Ich bin ein cripple

There are two concepts that are important in the on going discussions of growth attenuation (aka Ashley Treatment) as well as the lives of the severely disabled in general. What follows is one father’s opinion.

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-bodies, you are The Other. We can communicate, you are The Other. Obviously, the distinction is used in many other ways then the theme of this blog … We are white, you are The Other; We are straight, you are The Other; We are rich white men who run the large corporations, you are The Other.

Then we have the concept of dehumanization.

Dehumanize : to deprive of human qualities, personality or spirit ~Merriam-Webster

Taken to its extreme, we get the Nazi concept of  “Lebensunwertes Leben” or “life unworthy of life.”

According to the author of Medical Killing and the Psychology of Genocide, renowned psychiatrist Robert Jay Lifton, the policy went through a number of iterations and modifications:

“Of the five identifiable steps by which the Nazis carried out the principle of “life unworthy of life,” coercive sterilization was the first. There followed the killing of “impaired” children in hospitals; and then the killing of “impaired” adults, mostly collected from mental hospitals, in centers especially equipped with carbon monoxide gas. This project was extended (in the same killing centers) to “impaired” inmates of concentration and extermination camps and, finally, to mass killings in the extermination camps themselves.”

It must be noted that Americans did this to the Japanese during WWII with many references to “yellow vermin” and “living, snarling rats.” This led to the desecration of Japanese war dead by American soldiers, as has happened in innumerable conflicts, all well documented (such as here). One can only do this if the enemy is seen as less than you, less than human, like an animal to be slaughtered or dissected. The Japanese referred to the Allies as kichiku (mongrel-savage beast) and the Germans regarded Russians as Untermenschen (sub-human). 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, they are less than you.

Two distinct human ways to categorize 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.

Let’s take the word “cripple.” It may or may not have negative connotations for you, but it does create a category of Other. Then there is William Peace, who is not a “bad” cripple, but is the Bad Cripple, by his own words

What is a bad cripple? It is a person such as myself with an obvious disability who is well aware of their civil rights. When I am confronted with ignorance and bigotry, I do not bow down. I reject the stigma associated with disability and when my civil rights are violated I am quick to act.

Peace speaks out eloquently against growth attenuation, the so-called Ashley Treatment. His words are powerful and come from a position of being The Other. He speaks out as a cripple, a physically disabled person, one who can communicate, who is intelligent and an activist. Voices such as his are vital, but alas, he is not Ashley. He is not the potential victim of growth attenuation, he is a different Other.

I am guessing that Mr. Peace is more able bodied than Ashley was or my daughter is. He is certainly more able to communicate, eloquent of speech. He may or may not be more intelligent or higher functioning then they are, we will never know what they truly think or understand, but we must assume the differences are great. Thus, as an advocate, Peace’s speech is for himself, Others like him, but Ashley, Pearlsky, Chris, Sophie and so many others are just that, Others. A different Other. A silent Other.

Take the case of Terri Schiavo. She is 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 of 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 as well.

So who is 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, 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 normal 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. One who deserves the same legal, ethical, civil rights as everyone else. Maybe that is why I cannot 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, The Other.

The decision to perform growth attenuation may appear to have been a difficult one, but apparently it was not since many signed on to either have it performed or to do the procedure. Here you had a young lady 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 is undiagnosed, her future potential is 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.

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.

Mr. Peace is his own voice. That of a self-proclaimed “bad” cripple. He has rights, being the Other is acceptable because he fights, he sees us, the able bodied “normal” people as The Other (my interpretation, I invite his insight), for to him, we must be The Other.

Ashley was victimized. This is what we do to The Others, in war, in peace, abroad, and most horrifically (if not most baffling), at home. Her undiagnosed potential has been modified if not destroyed, for she is The Other, and it is deemed acceptable.

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 Cripple.

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13 thoughts on “Ich bin ein cripple

  1. I am someone who is trying to care for someone who is becoming unable to care for herself. She is dearly loved. I do not want to institutionalize her as her time in one of the best nursing homes in the area really did not do her well at all. She is clearly happier, healthier and able to participate in life when living with us.

    She is a big woman. I am not. As she is losing her ability to transfer from chair to bed, bed to toilet, car to chair, it is difficult to care for her. We are already pressed for time in dealing with her as it takes a loooong time for her to make any transition. A hoyer and other equipment are the next things that are looming on the horizon. She could use a room like your Pearl’s.

    I can see where growth attenuation comes up as a solution. Much of my MIL’s miseries have been from falls and inability to move quickly. It takes a lot to move her from place to place. I am not able to do it. Today she sat for a long time while the scanning facility tried to find a way to maneuver her. I am not about to strain my muscles and as a health facility that would be used by disabled people wouldn’t you think that they would have some method set up for situations like hers? Nope, they don’t. Apparently families who bring in someone like her, have their solutions with them, or they skimp on the tests. I did not do the former and refused to let them do the latter. So we stayed at an impasse for hours until they came up with a workable but undignified solution. Very unpleasant for MIL and she gets a lot of this these days.

    When my son was ill 13 years ago, he was still small enough for us to carry him, move him , lift him, and it did make that part of life much easier for him as well as for everyone else including us. Alot more cuddles and hugs and closeness. If he had been a big lugger, it would have been difficult for him and for us. When I read Dreammom’s blog of all she has to do with her very large Dear Son, I can feel the pain of having a child that you just can’t scoop up and carry, hug, move. Every time he has to be moved, it is a strain and a big deal. So I see why Ashley’s parents took the path they did. I am sure that they are finding it far easier to care for Ashley, and that Ashley is enjoying a more comfortable life in the many things that she had to do and have done every day. When we have to move my enormous MIL around, it is very unpleasant for her, and she is really hauled around like a big bag as we cannot hold her as we would be able to hold a small child. She is treated like a big fat lug by others as well, and there is no desire to help her transfer from most others whereas with a smaller child, folks do come running up to help. So, yes, i see why Ashley’s family did what they did, and Ashley may well have a much better life quality for it. A big, heavy disabled person is really not a desirable for many.

    As you are your daughter’s voice, so are Ashley’s parents hers, and thus what they say is supposed to be what she would say. I can tell you that if for a brief moment I could make a decision of whether I would want such a procedure done on me, given the future prospects of a condition like Ashley’s, I would choose to be smaller, easier to handle , more portable and not be this big lug that people don’t want to help. When the heavier folks at the nursing home need to be changed or transferred and they are helpless, the aids really do not want be the ones assigned to such patients. They prefer the lighter, smaller ones, and those patients get better care. I saw this for myself when MIL was in the home. My MIL,herself commented on the situation, sad that she is one of the big, heavy ones that no one wants to have to move.

    So is that makinga person an “other” when you feel that is a solution you would want for yourself, or as in the case of Ashley’s parents, it is a solution that they believe their daughter would want if she could make that decision, and they are making it as an extension of her, being her voice in the matter.?

    The problem with that solution is that it dismally fails the “if everyone did” test. It is a creepy thing to do. There is no denying that it is the first reaction most people would have. To stop growth and cut out body parts to make a person easier for care, like she is a piece of wood to fit in a space. That’s what bothers me. I believe that Ashley’s parents made the decision as her voice, not because she is an “other”, but for them to herald the solution so loudly and proudly as the way to go is wrong, as that solution can so easily be misused.

    Incredible that you could not opt Pearl out of the testing at school since parents of able body kids are doing so for their kids. Most kids would opt out if it were up to them–it’s the parents’ support of the tests that make them take the danged things.

  2. Single Dad, I get it. And I agree wholeheartedly. I was reminded of torture many times in your post — how those in our country justified doing it to other human beings as a means to protect the rest of us. Torture is probably the supreme example of making a human being an “other.” And how I feel about it in reference to your post and to Cath’s reply is that I believe torturing another human being to extract information about a nuclear bomb is wrong. I would rather die by said bomb. And altering your child’s natural growth and potential is WRONG in the same way. If we got really philosophical, we could say that our culture is strangely anesthetized from life, from illness, from death.

  3. Hmmm…….
    Peter Singer anyone? Isn’t he promoting the “first step” as laid out by Robert Jay Lifton?
    http://www.utilitarian.net/singer/by/1993—-.htm
    There are many, many disturbing things going on within society, with or without the “rationalisations” as offered by Singer.

    It’s about time the image of living with a disability and family life when caring for a child or adult with a disabilty is miserable or a nightmare or some other misconception was completely thrown out the window. While there may be more difficulties (often practical ones) to face, and often with a greater frequency or intensity – life is pretty much the same as for everyone else with ups and downs, happiness and sadness, the usual mix.

    There is a very good essay here by Harriet McBride Johnson, (who is infinitely better at expressing herself than I am)
    http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html

    p.s. I really hope the proudest boast for freedom is not “Ich bin ein Berliner” as it really is a kind of donut.

    [editor’s note: Your “p.s.” is an erroneous urban legend – SD]

  4. Very powerfully written and I’m in wholehearted agreement with you.

    If a person was paraplegic, or quadraplegic would it be acceptable to remove their limbs to make it easier for carers to move them about?

    I think the choice is there for a carer to say, I will care for the person, or I will not care for this person. But to say I will care for this person if I can chop bits out of them to make it easier is an entirely different ethical argument and not one we can subscribe to

  5. Cath: Remember, Ashley was undiagnosed. No one knew if she would be big, small or what. She may very well have had an early puberty and stopped growing. The attenuation attenuated an unknown.

    Kim: Absolutely agree, 100%

    Thank you everyone for the good words.

  6. Can’t tell for sure how tall or big any child will be. They were reducing the odds the best they could for Ashley not to grow in size or in sexual maturity.

    Should this sort of procedure be permitted? Should we be allowed to sterilize those who mentally disabled? How much say should parents have over what medical procedures their children should receive? A question that goes right to the life/death issues. Doesn’t seem right that a child should be dead or alive because of who her/his parents are and what they are willing to tolerate. After all, the care of the child can be transferred. How far should parental wishes be honored?

  7. Plain and simple, by her father’s words they removed her uterus to obviate pregnancy (which would only be by rape from her caretaker; family or those hired by the family), they removed her breasts for fear of potential discomfort and “sexualization” (by whom? the father? the mother? it is not clear), they did it to make “it easier to care for Ashley.THE FATHER’S WORDS. Call this what it is, dehumanizing her (“pillow angel”), already an Other, and then mutilating her to fit into their world. It was not a “medical procedure” any more than other actions taken in the past to physiologically change people for one’s own interests or experiments were medical procedures. This was horrific, just READ HOW HER FATHER JUSTIFIES THIS. Our society cannot allow this. It does not, her forced sterialization was found to be illegal. No one has a right to mutalate anyone else to make “it easier to care for” them. Period. It is NOT a parental right.

  8. Powerful and searing words. I also love the title of your post. It appears my words as the proverbial bad cripple have resonated with you. For this, I am glad. I appreciate your use use of the term the other and dehumanization. I hope many people understand the important points you make. The concept of the other figures prominently in the history and current practice of anthropology (my trade) and I was delighted to see you understood and use the term. While we have much in common I do disagree with one part of your post. I am not Ashley. This I cannot deny nor will any person suggest my growth be attenuated. I also am capable of asserting and expressing myself. But in my estimation I remain the other just as much as Ashley and all those with a disability. I see no difference between her and I. Identifying me as a “different other” accomplishes nothing. Indeed, this does nothing more than splinter all those who are disabled or perceived to be the other. In fact it is not uncommon for strangers to assume I am both physically and cognitively disabled. Remember the other is a social construction created by the normate–a term I dislike but seems apt here. In my estimation I write and advocate less for me than I do for those like Ashley that have no voice and are subjected to far more stigma and dehumanization than I ever will experience. Yet we others are all at risk and must work to empower ourselves. I do have a voice, one I must use or I would risk social invisibility. So yes, I fight, I rail against injustice and do so with gusto. My fight is against a social construction you eloquently wrote about–the concept of the other. I welcome one and all to my battle for social equality. The presence of a disability is not relevant. It is not people that are dangerous but the ideas they create and act upon. So I agree Ashley was victimized, considered the other, and dehumanized by her parents and doctors. This is what I want to fight against as it is in my best interest and all of humanity. I consider you a strong and fellow advocate. A voice for your daughter, me, and all those deemed the other because of a disability. And as you know the real disablement is caused by the callous and unjust world we live in.

  9. If the issue were castrating a boy to stop his sexual development there would be a completely different reaction. The diasbled person’s rights have to come before the ease of caring for him/her surely? And doesn’t a disabled person deserve a sexuality? Is it for anyone else to make that choice?

  10. And with this “OMFG did they really do that???” blog, I must end my ‘catching up’ for now.
    I am enjoying reading my words (in the male voice) and discovering what my time forgot.
    I’ll be back. Threat. Promise. Arnold Schwarzenegger joke. Truth.

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