- by Bri - (This is the Bioethics essay that started it all.)
Ablism? What's 'Normal'?
I should first disclose that I have an invisible illness that often leaves me physically disabled for days at a time. I often look “fine” to others and they may or may not know that I am technically disabled but I have days where I physically cannot get my hands, or my arms, or my legs to function properly and I often rely on aids to help keep my joints from constantly dislocating.
That being said I bristle a bit at the term “norm” or ‘normal’. My core issue here is how we define disability without looking at how society is inherently built upon a capitalist ableist framework. And if you haven’t heard the term “ableist” before I highly recommend doing some research about what it means (Read these: “Words Matter, and It’s Time to Explore the Meaning of “Ableism” and “Pushing Back Against Internalized Ableism: The Only Way Out it Through”) and how it’s built into our society. Much of our language and ideas about “disableds” comes from Nazi experiments during the Holocaust. In the article “Unspeakable Conversations”, the author mentions to Peter Singer (a well-known ethics philosopher, and advocate of the eugenics of disabled peeps) about how when we talk about undervalued babies no one ever mentions race and yet people are willing to say that it is acceptable to kill babies with disabilities. With this same analogy I’d like to look at how we talk about disabled people in our society. We don’t say “black people” and “normal people”. We don’t say “LGBTQ+ people” and “normal people”. Then why are we using “normal” as the standard to judge people in our society who are disabled or differently-abled? It has to do with the fact that we define ourselves in ableist terms (Read this article about ableist language: The Harmful Ableist Language You Unknowingly Use)
The very premise of our society (and this is from Nussbaum’s article (2011)) is based upon the idea that a human’s value (especially in a capitalist society) boils down to being able to produce income and wealth, this being the sole deciding factor in whether a human has any societal worth. The NORM is someone who can make income. The assumption is that disable people aren’t really people because they ‘probably’ can’t make money: they can’t have value in a capitalist society. This is soooooo deeply flawed, and yet so brutally ingrained into every aspect of our society. And one fun way I mess with these ideologies with others is by telling them I’m a “disabled college professor.” There’s usually a few moments of 404:Error that flash in their eyes and then I get a barrage of questions like: “How can you teach and still be disabled? That’s not possible.” Or “You don’t look disabled; I don’t understand.” Or “How can the college let you teach being disabled?” I also look fairly young so that also throws them for a loop: “You’re too young to use a cane!” HOW CAN I BE DISABLED AND YET STILL BE A PRODUTIVE MEMBER OF SOCIETY-----DOES NOT COMPUTE.
Which brings me to my first “norm” that limits access for those of us disables peeps: harmful stereotypes, perceptions, language, and ideologies that are embedded into our society that are inherently ableist and actively harm almost 25% of our country’s population. Until we can frame these discussions (in the same way we frame structural racism, institutionalized classism, etc.) from a foundation recognizing our societal structure is inherently ablest, it’s difficult to make any progress socially. When discussions of eugenics are still on the table (and believe me, you would be FLOORED to know that this discussion is very alive and well in circles that want to “get rid of the disabled problem” – there’s been a resurgence of eugenics support with Covid, which I’ll address below), we cannot even begin to restructure a society that accepts disabled peeps in over-arching meaningful way.
Eugenics, Disability, and that Asshole Peter Singer
Oh…wait. Eugenics. Yes this is my second “norm” I’d like to discuss as being a bit of a thorn for disabled peeps. If you’re not sure how (or what) Eugenics and ableism play into what we’re talking about, here’s a little article on the history of Eugenics. You might find some of the history all too familiar: “Intellectual and Developmental Disabilities: Eugenics”. Again our framework of how we discuss and understand disability comes from Nazi ideology.
Hey Peter Singer, I was a baby you would have wanted to kill after birth. Yup. I had dislocated hips at birth; in fact, doctors weren’t sure I would ever walk as the hip joints weren’t even formed even though I was past full-term and my other systems were developed normally. Had it been up to Singer, I wouldn’t have been capable of living a ‘full’ life in a wheelchair so it would have been a mercy to kill me in my infancy. BUT SURPRISE, FUCKER. (Sorry, I know, I know – language). It just took a few years for my hips to grow in properly and in high school and college (roughly a span of 10 years) I became a distance runner averaging 11 miles per day. And now that my genetic disease has caught up with me and I can barely walk, STILL, my life has value and I am a contributing member of society. AND I SHOULDN’T HAVE TO JUSTIFY MY EXISTANCE BECAUSE IT DIFFERS FROM THE ‘NORM’. So, Peter Singer, while I agree with your philosophies about animals, I do not think a head louse or plankton have more value as entities than disabled people. So to that, and to you, Singer, may I politely say “May you get bit every time you pet a dog.” While you might have been hot shit in the 70s, if I never again read any more of your theories, it will still be far too soon. Frankly I have no interest in reading your “Nazi-Lite” philosophies in regards to disabled people. In summary, Dear Singer, “There are 171,476 words in the English dictionary but none describe how much I wish to hit you with a chair.”
“Almost every human will experience disability at some point.”
“Almost every human will experience disability at some point.” Again, it’s absolutely BONKERS to me that a society, knowing full well that EVERYONE in that society will face disability at some point, is so resistant to make accommodations for disability. You know how the young people say to someone who’s dating a terrible guy to just “Throw out the whole man?” I argue let’s throw out the whole capitalist society and build a society that baseline accepts that all humans have intrinsic value. End stop. Study after study shows how accommodating disabled people helps EVERYONE. (“Why Designing for Accessibility Helps Everyone”, “Disability and Health Inclusion Strategies: Universal Design”, and “How Helping People with Disabilities Helps Everyone” about this). But its costs time, money, and a paradigm shift in how we value the other humans around us. If we can’t get society to collectively wear masks to protect the most vulnerable in society because it infringes on individual rights, re-designing a society to include all people is….a ways off. To put it mildly.
Disabled Peeps and Intersectionality
Disabled people can be found across all marginalized and oppressed identities. Therefore we need to address disability not as an isolated identity, but with an intersectional approach. Since this discussion is getting a bit long already, here are some fantastic discussion on intersectionality in general, the concept of Multiple Minority Identity Stress, and related disability issues in these groups:
Crenshaw, K. (1991). Mapping the Margins: Intersectionality, Identity Politics, and Violence
against Women of Color. Stanford Law Review, 43(6), 1241. http://blogs.law.columbia.edu/critique1313/files/2020/02/1229039.pdf
Science Direct has an excellent selection of articles related to the “Minority Stress Model”: https://www.sciencedirect.com/topics/psychology/minority-stress-model
Full Spectrum Child Care. (2020, Sep 10). When identities collide: the significance of intersectionality within the disability community. Full Spectrum Child Care, LLC. https://www.fullspectrumchildcare.com/blog/when-identities-collide-the-significance-of-intersectionality-within-the-disability-community#:~:text=Through%20a%20Critical%20Race%20Theory,institutions%20(legal%2C%20educational%2C%20and
DnA [Blog]. (2019, Apr 12). Identity beyond disability. Medium. https://medium.com/dna-s-blog/identity-beyond-disability-3d59d19b1dad
COVID and Disability
Unfortunately, one of the main issues in disability communities that has been renewed due to COVID is the argument of eugenics. And again, since this discussion post is already a novel and a one-act play, here are some articles that directly address this issue. The majority of disability communities I’m in have been discussing this issue since language at the beginning of COVID had nuances of eugenic ideology towards those of us already disabled.
Pulrang, Andrew. (2021, Dec 28). What does ‘Living with Covid-19’ mean for disabled and chronically ill people?. Forbes.com. https://www.forbes.com/sites/andrewpulrang/2021/12/28/what-does-living-with-covid-19-mean-for-disabled-and-chronically-ill-people/?sh=4302d99f74f7
Fox, Jacqueline. (2021, Jul 23). The current COVID-19 surge, eugenics, and health-based discrimination. Harvard Law School. https://blog.petrieflom.law.harvard.edu/2021/07/23/covid-eugenics-health-based-discrimination/
Garcia, Eric. (2022, Jan 5). Biden and CDC’s Covid-19 variant guidelines have disabled people feeling left for dead. MSNBC.com. https://www.msnbc.com/opinion/biden-cdc-s-covid-19-variant-guidelines-have-disabled-people-n1286967
Appleman, Laura I. (2021). Hiding in plain sight: public health, eugenics, and COVID-19. Harvard Public Health Review [HPHR.org]. https://hphr.org/30-article-appleman/
TL/DR
*If you don’t read anything else in my post, READ THIS:* And finally, if you’ve made it this far but still want an insider’s view on what it’s like to have a disability, read “Spoon Theory” I’ve linked here. It’s by far the clearest example of how people with disabilities adjust their lives to accommodate their physical or mental differences.
Miserandino, Christine. (2022). The spoon theory. But You Don’t Look Sick. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
(Also……Fuck you to Hell and back, Peter Singer.)