Inclusion Daily Express -- "Ashley"

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"Ashley"
by Eleanor Canter

Ethicists, doctors, and lawyers are once again mounting a publicity storm defending their decisions to disregard the value and dignity of a person with a significant disability. Not since Terri Schaivo have we seen the bioethics and medical community come out with such force to defend what many in the mainstream media are calling barbarism. In this case, somewhat surprisingly, the public has developed a curiosity about the disability perspective, something that never happened in the Shaivo case. This has arisen out of the shocking details of the story, in which a 6-year-old girl was given "growth attenuation," a series of high doses of estrogen, intended to halt her growth. The parents of now 9-year-old Ashley have framed the issue around their desire to keep their daughter at a manageable height and weight so as to avoid the perceived painful decision of forced institutionalization at an unknown point in the future.

The yet unidentified parents have portrayed themselves in the media as loving caregivers looking only after the best interests of their child.

Experts of all sorts have come to their aid, declaring without reservation that there will be no investigation into the matter because no crime has been committed. Ashley's parents describe their actions as "an easy choice".

As one looks more closely at the case, the details that have begun to awaken public outrage become clearer and the motivations of the main characters begin to shine. Photos released by the family show "their Pillow Angel" lying in bed, helplessly looking first into the camera and then away, in despair. The prominent facts of the case have quickly grown cliché, but early reports of the story include pictures of Ashley outdoors, using a wheelchair, and do not omit the fact that she attends school, enjoys music, and responds to those around her. The details of her abilities- irrelevant to the disability community- will be debated ad nauseum, just as they were with Terri Schaivo, but they are indebatably a manufactured product of a family motivated to keep their disabled child in a state of perpetual infantilism. The morally reprehensible aspect of the procedure is the elective (non-medically necessary and questionably beneficial) sterilization of Ashley. One article mentions that the parents initially brought Ashley to Seattle Children's Hospital in Chicago after they noticed the beginning stages of ("precocious") puberty. At the hospital they were informed of the experimental procedure and petitioned an ethics board to allow experimentation on Ashley, though not medically necessary. The ethics committee may have been, according to Lawrence Carter-Long, Director of Advocacy at Disability Network New York City, questioningly comprised. "I want to know why people with disabilities weren't addressed in this matter and why we left it to the ethicists and those folks in ivory towers because when we've done that, we've seen situations in the past of forced sterilization, forced institutionalization. The so-called experts don't always know what's best. And I think we need to get past our fear of disability so we can address the real needs that real people have," says Carter-Long.

Proponents of the "Ashley Treatment" seem to have no qualms about responding directly to accusations of discrimination and even mutilation with the claim people with significant disabilities simply should not have any say whatsoever in their medical decisions. Ethicist James Hughes, representing the Institute for Ethics and Emerging Technologies states, "Well, it's really without examining her, and I don't want to commit the Bill Frist fallacy of diagnosing a patient without having examined the patient, but it's really immaterial to this case. This patient will never be able to participate in the making of her own medical decisions, whatever her mental condition is. We know that that's not going to change… Absolutely [there are a lot of handicapped people like that], and they all have to be cared for by someone and their medical decisions have to be made for them by someone else".

Richard Herman, Defense Attorney, puts forth the claim that the "Ashley Treatment" cannot compare to other instances of child abuse and mistreatment because, "We don't have examples like this. This is inconceivable for the majority of citizens in the United States, to have a person, possibly full-grown, with the brain capacity of a 3-month-old… I mean, this is a horrific situation." Herman is referring not to the sterilization of a 6-year-old girl, but the simple existence of a sexually mature developmentally disabled adult.

Ashley's parents disclose similar motivations in their decisions to "scrape her breast buds," citing a fear that Ashley may one day be sexualized. Their presumption is that any sexuality Ashley could ever possibly experience would be sexually deviant or abnormal. Their basic claim is that by removing her breasts the (commonplace?) desire to rape disabled women would be somewhat dissipated. It is clear that this sentiment is representative of our society's revulsion not only at the idea of a sexually mature disabled adult, but also the preclusion of the fundamental right of reproduction of people with significant disabilities.

Regardless of how each of us may feel about social welfare, we live in a country in which the right to reproduction is held to be not just a civil right, but also a human right. Even in extreme cases, such as when a mother murders her children, the punishment of sterilization is off the table. Why, then is this considered acceptable because the person in question cannot verbalize their desire not to be sterilized? That desire is considered something that does not need to be verbalized, so proponents of the "Ashley Treatment" have to rely on the theory that we as citizens could never understand what it is like to be either developmentally disabled or the caregiver of a developmentally disabled adult. In their blog, Ashley's parents explain that they consulted with a lawyer because they learned that there might be issues with sterilizing a person with a disability, "Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so." And with that quick brushstroke any moral questioning that might normally be given to the discussion is brushed aside. "Providing our daughter with this treatment was an easy decision," they report casually for those who might have had the misunderstanding that a decision like this may have been a difficult one for any parent to make.

Sadly, the argument that we as citizens will never understand what it is like to have developmental disabilities or care for someone with developmental disabilities will probably be accepted by most of our society, without consideration of the voices of our community, which resoundingly pronounce that we believe that our lives do have value and that we, without exception, feel deserving of the same human rights granted even to criminals. Mary Johnson has called for the voice of adult women with disabilities to come forward. Ashley probably communicates in many ways, but those alternative means of communication are not valid to a medical industry that condones medical experimentation on the people with disabilities and a society that has already decided that she will never be capable of making valid medical decisions in her own interest. But she also has something else: the voice of the disability community and the Disability Rights Movement. The opportunity we must seize from this horrific situation is to participate on a national level in the debate on medical experimentation on people with disabilities that is, though not typically to this extreme, commonplace.

And we must once again drive home the point that our bodies are not a problem to be solved, but a part of human society currently imprisoned by fear, discrimination, and misunderstanding. Ashley's perceived future problems could easily be solved by redirecting Federal, State, and community dollars toward comprehensive in-home care instead of support for forced institutionalization, a debate the disability community has been trying to spark for 30 years. Until that debate has been adequately discussed, the issue of "breast bud scraping," sterilization, and imposed external non-development will remain inherently offensive to the victims of these crimes: the one expert voice not yet consulted.

Eleanor Canter
Freelance Journalist Muskegon, Michigan
eleanorcanter@yahoo.com

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