By Aimee Sterk, LMSW, MATP Staff
About a month ago, I started a discussion on shame and disability and how it relates to use of AT. Shame impacts how we see ourselves as people with disabilities and how/if we use assistive technology (AT). Shame’s opposite is owning oneself and one’s story and still feeling worthy. Addressing shame involves practicing shame resilience by naming it, talking about it, owning and telling one’s story (Brown, 2010).
Unfortunately, many people with disabilities are not given this opportunity. Whether born with a disability, acquiring it at a young age or as an adult or older adult; most interventions for people with disabilities focus on health and access: getting assistive technology, treating chronic conditions, advocating for access to school and work. None of these addresses the key components of shame resilience: talking about shame and moving forward from there to tell one’s own story—as a person with a disability. Through shame resilience, we as people with disabilities can develop self-pride and the ability to be authentic. This includes not hiding one’s disability, not feeling ashamed of it; instead, naming it as a key piece of one’s identity for which one has, or is working to have, pride.
Media messages convey societal views of the lives of people with disabilities. Facebook is rife with images of people with disabilities as objects of “inspiration porn”. “Inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary – like playing, or talking, or running, or drawing a picture, or hitting a tennis ball – carrying a caption like “your excuse is invalid” or “before you quit, try” or “the only disability in life is a bad attitude”.
The intent of this inspiration porn; it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life”. It’s there so that non-disabled people can look at us and think “well, it could be worse… I could be that person”.
In this way, these modified images exceptionalise and objectify those of us they claim to represent. It’s no coincidence that these genuinely adorable disabled kids in these images are never named: it doesn’t matter what their names are, they’re just there as objects of inspiration.
But using these images as feel-good tools, as “inspiration”, is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them…
And there’s the rub. My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing (Young, 2012).
Eli Clare’s in his book, Exile and Pride, comments on the effects of the stories.
The non-disabled world is saturated with these stories… they focus on disabled people “overcoming” our disabilities. They reinforce the superiority of the non-disabled body and mind. They turn individual disabled people who are simply leading their lives into symbols of inspiration… [The] stories never focus on the conditions that make it so difficult… I don’t mean medical conditions. I mean material, societal, legal conditions. I mean lack of access, lack of employment, lack of personal attendant services. I mean stereotypes and attitudes. I mean oppression… [Underneath stories of inspiration] lies pity, tragedy, and the nursing home. Disabled people know this, and in our process of knowing, some of us internalize the crap. We make [inspiration] our own… as a shield, a protection, as if this individual internalization could defend us against disability oppression…. To transfer self-hatred into pride is a fundamental act of resistance.
It is only after taking the steps to scrutinize and refute these internal and external voices labeling us with pity, and as recipients of care, living lives to be avoided, that we became comfortable with the totality of who we are as people with disabilities. Developing disability pride offers an alternative view where we are not forced to live in shame. Understanding who we are as people with disabilities also allows us to consider how our disability identity intersects with our other identities including race, gender, sexual orientation, religion, and class. Many people with disabilities face additional oppression from the communities of their other identities—race, gender, sexuality.
Have you scrutinized the voices you hear and listen to about yourself as a person with a disability? Have you taken a look at the intersections of your many identities and the impact on how you see yourself, if you have pride, if you reject inspiration porn? How do these relate to your use of assistive technology?