A little while ago, I was chatting with Evan when I made some offhand comment about something being “crazy” or “lame”. Honestly, I can’t remember what the comment was about. I do remember Evan mentioned that he was making a conscious effort to avoid language that helped embed our negative cultural attitude towards disability and mental illness.
At the time I was somewhat dismissive of his comment. Don’t get me wrong, I certainly do believe that our words matter.
But in that moment, I just filled away his comment without much thought.
I wonder if the reason I was so dismissive is because of the social invisibility of disability. As a society, we tend to ignore the voices of disabled people, unless they have a particularly tragic and/or inspirational story to share. We don’t want to hear about the ways our society continues to be stacked against disabled people. And we certainly don’t want to hear that we need to change.
Recently, I read A.J. Withers’ book, Disability, Politics & Theory, and it challenged my perspective on disability in several ways. Specifically, it pointed out how our cultural values and societal norms can (and do) oppress disabled people. Since I don’t want to share too much directly from Withers’ book I’ve only included the two excerpts that I found most shocking. If you’d like to learn more you can purchase their book here, or peruse their website here.
1. When it comes to disability, eugenics is alive and well
“While eugenics often operates under other names and with less open aggression than it did in the past, it continues to function as an active consideration in a number of public policies…” (30 Withers)
Since World War II, eugenics has been associated almost solely with Hitler and the Nazi crusade to eliminate Jews, homosexuals, disabled people, and well, anyone who wasn’t Aryan.
For those of us who grew up hearing about the atrocities of the Holocaust, it can be surprising to hear that eugenics was a popular theory throughout Europe long before the war. It can be even more surprising to hear that eugenic-based practices continue to be carried out, even today.
Withers compiles well-documented examples of post-WWII eugenics in Disability, Politics and Power. They touch on the more extreme forms of Eugenics that have only recently been stamped out, like forced sterilization in Canada and in the USA that not only targeted disabled women, but also women of colour (25-26). Withers also points out some contemporary social issues that demonstrate our continued adherence to certain eugenic principles. Coerced sterilization (26-27), racist immigration policies in Canada and the States (29), prenatal screening, and genetic counselling (49-52) are all contentious issues that are ultimately all based in a eugenic system of values.
2. Disabled people don’t benefit from disability charities as much as we are led to believe
“By and large, disabled people live in poverty while billions of dollars are funnelled into the charity system every year.” (59)
While Withers points out that many disabled people need the assistance charity provides, they also address many problems with the charity system. The way administration costs can take up a huge portion of the profit is touched on, but a lot of critique is levelled against the effort charities put into eliminating certain illnesses. This could be traced back to our social eugenic values, which puts more emphasis on eliminating an illness than empowering those affected by it.
According to Withers, a large portion of charity money is spent on administration and research, leaving little to no support for individuals currently living with that illness.
In the small amount of research that I did, I found it fairly standard for charities to use less than a quarter of their funds to assist individuals living with that particular illness. This is a screenshot of Cystic Fibrosis Canada’s budget. You can see their full infograph here.
This image is taken from the Canadian Cancer society’s financial report. The administrative costs listed here are considerably less than those Withers cites from only a few years earlier. I suspect this may be partially attributed to the public critiques cancer charities have been under for the past couple years.
Since the majority of charities are run by individuals who are not disabled they do not always act in the interest of those they are seeking to serve. In fact, they can sometimes serve as systems of segregation. Summer camps and sheltered workshops offer kids and adults the opportunity to work or play alongside other disabled individuals, but they also separate disabled people from the general public. While the segregation aspect alone is highly problematic, Withers also points out that “sheltered workshops are more aptly called sweatshops” (73). Withers supports this claim with examples of sheltered workplaces that pay below minimum wage and sometimes don’t even meet workplace safety standards.
After reading Withers’ book, I was struck by the us/them dichotomy in our social engagement with disability. Rather than recognizing disability as an alternative (and just as fulfilling) way of living, we have done everything possible to eliminate anything outside the norm. When that hasn’t been possible, we have tucked away our disabled members of society, and poured money into charities with the goal of finding a “cure”.
For most of our history we have treated disabled people as the ‘other’, but activists like Withers are challenging that perspective. If we can take the time to listen, we might learn a new approach, an approach that isn’t haunted by our legacy of eugenics or the paternalism of charity.
* When I received my Special Education training, we were taught to use “people first language” so that we could emphasize an individual’s personhood over their disability (i.e. “people with disabilites”). For this post, I’ve followed Withers example by using the phrase “disabled people”. Withers explains that,
“The phrase ‘disabled people’ does not treat disability as passive or an afterthought. Disability exists as a consequence of an active proceed of marginalization – people are disabled. Disability is imposed on us” (7).
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