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.