Delineating disability rights

Good evening my dirty little city.

I want you to meet someone:

[link]

Her name is Ashley X, and she is the little girl who will never grow up. Read on.

The following excerpts are taken from [link]

…Three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of estrogen to stunt her growth. In other words, Ashley was sterilized and frozen in time, for ever to remain a child. She was only 6…

…Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed or even swallow food. Her parents argued that “keeping her small” was the best way to improve the quality of her life, not to make life more convenient for them….

…By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia — and the removal of her uterus means that she will never have a menstrual cycle or risk developing uterine cancer.

Because Ashley was expected to have a large chest size, her parents say that removing her breast buds, including the milk glands (while keeping the nipples intact), will save her further discomfort while avoiding fibrocystic growth and breast cancer.

They also feared that large breasts could put Ashley at risk of sexual assault.

The case was approved by the hospital’s ethics committee in 2004, which agreed that because Ashley could never reproduce voluntarily she was not being subjected to forced sterilization, a form of racial cleansing promoted in the 1920s and known as eugenics. However, the case of Ashley X was not made public, and, as a result, no legal challenges were ever made.

Ashley’s doctors, Daniel Gunther and Douglas Diekema, wrote in their paper for the October issue of the Archives of Pediatrics and Adolescent Medicine that the treatment would “remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so”.

The paper inspired hundreds of postings on the internet: many supportive, others furious. “I find this offensive if not perverse,” read one. “Truly a milestone in our convenience-minded society.”

It was the critical comments that finally provoked Ashley’s father to respond.

While remaining anonymous, he posted a remarkable 9,000-word blog entry at 11pm on New Year’s Day, justifying his decision.

The posting includes links to photographs of Ashley, in which the faces of other family members, including Ashley’s younger sister and brother, have been blanked out. “Some question how God might view this treatment,” he wrote. “The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal . . . to maximize her quality of life.” …

…The medical profession is divided. “I think most people, when they hear of this, would say this is just plain wrong,” wrote Jeffrey Brosco, of the University of Miami, in an editorial. “But it is a complicated story . . . (But) high-dose estrogen therapy to prevent out-of-home placement simply creates a new Sophie’s Choice for parents to confront…

…George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered: “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.”

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Stop for five minutes and think about this one for a second. Try to deconstruct your meaning of living.

What makes it ultimately worth living for? What is it ultimately, singularly about? Is it about how long you live?

Imagine seeing yourself fifty years from now. You’re sitting on your recliner, with a knitted quilt spread above your lap; to keep the warmth in. your spouse is dead. You’re sitting with your grandchildren, and you’re suffering from Alzheimer’s and tuberculosis.

Now, is it all about the good experiences?

Like the time when you won your first golf tournament? You, so euphoric, so elated by experiencing the best experience that you can conceive in your short life here on earth, that you wouldn’t want anything else. You wouldn’t mind being taken away by the One Above. You leave your family and all your other love ones in that blink of an instant that you thought about it.

Is it all about the bad experiences? - The ones that make your throat dry, that make you turn pale, yet you wouldn’t want to forget about them because these are the experiences that make you stronger?

Take a look at Ashley again. She’s nine years old and suffers from static encephalopathy. She has the mental cognition of a three-month old. Her budding mammary glands, appendix, uterus all have been removed, and she’s been injected with estrogen to prevent not only her secondary sexual characteristics to develop but, to stop her overall growth entirely and remain small.

Life. Living. It’s an indissectible amalgam irony of good and bad experiences; and in the end, of one’s understanding and meaning making - much like Gestalt.

So, would you consider this as a pharmacological solution for her parents’ social failure?

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My take on this is that you can’t oversimplify such a complex definition that varies from each person’s point of view and capacity of comprehension.

Still, there has to be limits on pervasive medical and pharmacological procedures as not all recipients are aware, much less understand its implications, to resist. By saying that you aim to make one’s life worth living by denying her the experience of growth, discomfort, of pain, and of suffering, is equitable to denying that person a full life.

Taking this concept to a more abstract level that it is now, I embrace the thought that I am imperfect. That say, that I have a scar on my right knee, that I have poor vision, that I once had a malignant tumor, that I’m sometimes cynical, to the point of acerbic. It’s what makes me me.

If everything in our existence is perfect, it would loose its value.

Yes, she will have a better quality of life, I’m not arguing against that. It’s that she won’t have a full life in her context that she could experience meaningfully.

Enjoying this? You like the way I describe shit and the numbing truth to people you would have probably walked past in the street last week?

Good. You earned it. With your silence.

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I’d like to end this one with an open note for your inputs, and a personal quote:

“What meaning is there to exist when the poor has no one to look up to and for the rich to look down to? When all dreams are real and when all efforts come in vain?

How can joy exist without sorrow? It’s unrealistic and absurd for a perpetually happy world for after a while, it would cease to be happy; it would be boring.

Contrasts and limitations are thus necessary for anything to be considered valuable.”