Disability Isn’t…

An Open Letter From Your Friendly Local Inconvenience

This article is written with the knowledge and endorsement of the author of ‘Disability Is…’

Last month, Frankly Speaking ran an article about disability that made me, and a few other disabled people at Olin, uncomfortable and angry. A lot of that discomfort stems from what I see as the flawed premise: it is an article, written by an abled person after a one-semester class about redefining perceptions of disability and normality, that seeks to define “disability.” (I’m extremely wary of a class that lets students leave with opinions like this, and I would like to encourage students to be critical of class pedagogies and materials, especially those dealing with such sensitive subjects!) The article reads like a personal reflection, and indeed that is what the class assignment was—something much more appropriate to share in private than in public, because of the naïve and potentially harmful views it seems to espouse. How is the content of this article harmful to disabled people? For me, at least, it is easy to read it and feel like an object of curiosity, a metaphor for other people’s consumption rather than a fully formed being. For me, it is easy to read it and feel that as a disabled person I am the only one who doesn’t feel safe sharing my perspectives on what disability is. For me, this article is another reminder that I live in a world that seldom considers or tries to understand my perspective.

There were a few things I liked about the article; I appreciated the emphasis on the social construction model of disability. This model tells us that impairments are physical, neurological, or psychological conditions that make some functions more difficult; and that disability is a condition inflicted on us by a society that designs public systems for a specific set of needs that we don’t share, or that are directly contradictory to our needs. The second paragraph of the article is a solid representation of this model, and I was happy to see a public acknowledgement of it. The paragraph that directly follows it is more bewildering because the conclusion doesn’t seem to follow at all from what came before. It does not read as a well-considered train of thought. I understand very well what it’s like to be so excited about a new concept that you just have to share it—but when that concept is the lives of a historically oppressed group of people, you really want to take the time to make sure you’ve got it right.

“Disability is the reminder that we are all fragile, temporary beings on this planet…” the third paragraph begins. The author’s intention was to depict not the “truth” but the perspective of someone uncomfortable with disability, an intention which was not at all clear to me reading it. Directly following a textbook explanation of the social construction model, I read what sounded like the author’s own strongly-held opinion, and my reply is: the concept of disability was not created to remind abled people that this could happen to them at any time. It was created to give a name and cohesion to a group of people with impairments who suffer, directly or indirectly, because of them. The reason society makes things difficult for those with minds and bodies considered abnormal is not to remind abled people about the fleeting nature of their lives. It is because we are seen as inconvenient. More convenient alternatives to designing with our needs in mind include ignoring us, trying to breed us out of the population, imprisoning us in abusive care systems, and straight-up murdering us. This was the understanding I had when I read the paragraph about the social construction model; to jump immediately to what reads to me as both an insult and inspiration porn felt like a slap in the face.

Before I get to inspiration porn, a term with which some readers may not be familiar, I want to talk about the insult. “The sight of a disabled person creates an unease… I believe that one source of this discomfort is the inability to ignore the fragility of the human body …the inevitability of breakdown, death, and decay…” First, it’s a reminder I didn’t need; I am aware, almost at all times, that my existence makes people uneasy. I know from experience that I need to wear a heavy disguise to appear in public. Some people do not have the luxury of wearing a disguise, and is to these people that the author refers: those with visually apparent physical disabilities. To reduce their experience to their physical appearance, viewed through the eyes of abled people as an object of disgust, is mean-spirited. It was also certainly not the author’s intent, but again both word choice and choice of concepts needs to be considered carefully in order to avoid hurting the people you’re talking about. What I, very personally, would like to ask is empathy. This article is clearly written from the perspective of an abled person looking at disabled people, without the firsthand context of their experiences. When I see physically disabled people, I don’t suddenly remember my own mortality or how easily I could be injured and permanently impaired. I think about the incredible amount of inconvenience they probably have to go through in order to go about their daily business. I worry for their safety and mental health in a culture that devalues their emotions and personhood. The actionable result of this thought process is that I take care to amplify their voices when I can, to listen carefully to them, and to help them when they need help. It’s the same thing I would appreciate people to do for me.

Inspiration porn is another important concept in any discourse about disability, coined by Stella Young, a disability rights activist, in 2012. I took the following definition from Catherine Soper’s excellently succinct article on the subject.[1] “Inspiration porn is a term used to describe society’s tendency to reduce people with disabilities to objects of inspiration. You’ve all seen the memes… [such as] a picture of a small child running on prosthetic legs accompanied by the caption ‘what’s your excuse?’ These images make the people viewing them feel great, but often they take images of people with disabilities simply living their daily lives and make them extraordinary.” Another article by Elizabeth Heideman[2] adds, “Inspiration porn turns people with disabilities into mere objects, placing their physical differences on display and reassuring the viewer that ‘If these people can live with just one leg,’ for example, ‘I can do so much more without a disability.’” The idea of defining disability in terms of abled people’s reaction to it leaves a bad taste in my mouth. Disabled people do not exist as an inspiration to try harder, a reminder of any kind, or the impetus for a philosophical realization. We exist as nothing more or less than people.

I would love to create a culture at Olin that supports disabled people and amplifies our voices. I would love to create a culture at Olin where I’m not afraid to mention the specifics of my disability, for fear of spending half an hour trying to explain my point of view, heart pounding, growing more upset until I have to end the conversation abruptly. I want to feel safe at Olin, and I want to feel like people are willing to respect me, and others like me, as more than design challenges or edge cases. I want to make this school safe for everyone who comes after me, and I want your help. Challenge your own assumptions about what disability is. Think critically about the perspectives you are given. Do research. Listen to the voices of marginalized people, and don’t speak for us. What we want is what you want: the support to do what’s worth doing, and what we love. Thank you for all your help.