disability


I’ve been reading a lot of blogs lately. Brownfemipower wrote about disability in poor/of color communities and also about assistive devices signifying disability. I think that the observation that cuff crutches and wheelchairs and the white and red cane code a person as disabled is accurate. This is why people talk about “invisible disabilities.” I think that, in addition to disabilities that have no external signifier (such as severe asthma, congestive heart failure, kidney disease, or lupus, to name a few), people who do use assistive devices may be “invisible” (not be read as having a disability) if they also appear young, healthy, or not completely debilitated. I read the journals of people who detail being accosted by complete strangers and told that they aren’t really disabled, or who interrogate them about their disability and demand explanations/justification.

Where I come from, the concept of disability didn’t really exist. People had disabilities, but it wasn’t a point of social organizing or identity. Rather, impairments were a limitation like any other: like not being able to read, not having a driver’s license, not being a legal resident, or not being good in the kitchen. If a person couldn’t contribute in one way, they were expected to contribute in another way. If someone had a disability so severe that they couldn’t contribute, but they were not dying, then they were considered lazy. Short-term impairments garnered some degree of compassion, but if a disability or series of disabilities was permanent, then a person was expected to make the best of things and move on with life. This made mental illness particularly stigmatizing because it was not very well understood and the impairments it caused were not readily excused.

Likewise, the idea of accommodations as a right or an entitlement was foreign. Of course, this was before and just after the Americans with Disabilities Act (ADA) became law, so maybe the changes just hadn’t proliferated to my community yet. However, inaccessible places were just a part of life that people with disabilities had to cope with as well as they could. This was a poor community and no one could afford the expensive cochlear transplants, the expensive ramps, the expensive elevators, the screen reader. I had a neighbor who was a wheelchair user. He worked at the top of several flights of steps in a building with no elevator. Every day, he would go to work and inch his way up the stairs, step by step, dragging his wheelchair along, then repeat the process in reverse. To give you an idea of how long this may have taken, it took him 15-20 minutes to get out of his chair, climb the five or six steps to the front porch, and get back in his chair. Of course, this may have been because he was so tired from doing the process at work, but you get the idea.

I’m sure there were pockets of enlightenment about disability issues in my community and in the surrounding area. But I think that, in some ways, the same attitudes continue today. I believe that having access to food, housing, relevant education, and employment are basic human rights. When these rights are violated on a daily basis, how can we expect that other rights will be respected? In poor/of color communities where people don’t have a lot of autonomy because they’re at the mercy of the system/corrupt bosses/charity for survival, sometimes even having a job is something to feel incredibly grateful for. I think that keeping us grateful for scraps is a way of keeping us powerless. We deserve better. No, it doesn’t matter what we deserve. We have a right to better.

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Last Friday, 30 March 2007, the UN Convention on the Rights of People with Disabilities was finally opened for signing. The convention has been in development since 2001. According to the convention website,

”The purpose of the convention is to promote, protect and ensure the full and equal enjoyment of all human rights by persons with disabilities…The convention marks a shift in thinking about disability from a social welfare concern, to a human rights issue, which acknowledges that societal barriers and prejudices are themselves disabling.”

What I consider notable (although not unusual) is that the USA was among 23 countries that objected to wording that people with disabilities have a right to “sexual and reproductive health services.” Another phrase that was eliminated was the right of people with disabilities to “experience their sexuality.” Although the final—less specific—wording about equal access to free health services is nice, the original language was important. People with disabilities have historically been perceived as nonsexual (or, the other extreme, fetishistic and hypersexual). Women with disabilities, especially, often encounter resistance of health care providers to provide necessary medical services. Pregnancy screening, STI screening, and PAP tests are often overlooked and doctors neglect to provide education about sexual and reproductive health under the assumption that people with disabilities are not sexually active.

In a 2004 report on healthcare problems faced by persons with disabilities, a wheelchair user reported being told by a physician:

”There is no reason for some one like you to be tested for AIDS; the test should be administered to those who really need it (people who are sexually active).”

This attitude is not uncommon.

In 1907, the first Compulsory Sterilization law was passed in the United states in Indiana, with 26 other states following suit. Most states did not require the consent of the “defective” or their family, and sterilization programs were carried out against people with disabilities, people of color, women who were independent or sexual, etc. Often, a woman would have her uterus removed while she was in the hospital for something else, such as giving birth. The only legal requirement was that they be notified after the procedure, and it was not always adhered to. The 1927 Supreme Court case Buck v. Bell upheld forced sterilization of people with mental disabilities as constitutional. Justice Oliver Holmes said, famously: “Three generations of imbeciles are enough.” One source suggests that, as of 1957, reported compulsory sterilizations in the USA number 59,186. The last eugenics program in the US remained in effect until 1981—only 26 years ago!

Many people deny that systematic violence against people with disabilities ever occurred. However, those that do acknowledge this violence dismiss it as a thing of the past. Yet just last year, a young girl with disabilities had her sex organs removed and her growth halted with high-dose estrogen injections. This was supposedly so she wouldn’t be bothered by uncomfortable breasts or grow too big to be pushed around in a stroller or become the target of sexual assault. The so-called “Ashley Treatment” is an example of drastic human rights violations—not only of the rights of a person with disabilities to experience her sexuality, but also of her basic right to bodily integrity. Of course, the world isn’t willing to spell out that right in the Convention on the Rights of People with Disabilities. In an article about the Ashley treatment, her parents said that,

”The removal of the girl’s breast buds was also done in part to avoid sexual abuse.”

Because having an adult woman’s body causes sexual abuse? Because no child has ever been sexually assaulted? The most appalling statement made was by George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies. He said:

“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. The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”

Did I read that right? The existence of an adult woman with a mental disability is grotesque? And it is impossible to violate the dignity of a person who cannot protest that violation? The ignorance and prejudice displayed is profoundly disturbing, but again not surprising. Cory Silverberg puts it well: “You can’t say that you believe in human rights, but not for people who can’t articulate their value.” He goes on, ”Someone may not be able to read, but it doesn’t mean they can’t feel, communicate, experience pleasure as well as pain, and live.”

A woman with a neurological disability commented that,

“The most problematic thing in my life is people who assume that their quality of life is better than mine simply because they aren’t disabled.”

Of course, the USA doesn’t believe in global accountability and doesn’t plan to ratify the Convention anyway, so why am I wasting my time? They have a track record for minimizing the importance of international human rights legislation. The Convention on the Rights of the Child, was adopted by the United Nations in 1989 and, to date, the only UN member nation states that have not ratified the convention are the United States and Somolia. The Convention on the Elimination of All Forms of Discrimination against Women opened for signature in 1979 and the United States still has not ratified it, along with Iran, Nauru, Palau, Qatar, Somalia, Sudan, Tonga, and the Vatican City. It is still unclear whether the United States is in compliance with the Third Geneva Convention with regard to treatment of prisoners in Guantanamo Bay.

Having clear international standards outlining the rights of people with disabilities is important and the convention is a positive step forward for the international community. However, it is by no means enough. The USA in particular has a long way to go in ensuring that even the most basic human rights are respected and viewing people with disabilities as contributing, indispensable members of society.