We look at a pair of shoes a million ways, from a myriad of perspectives, but unless we try them on, we will never know how they actually fit. Have you ever ordered shoes on Zappos? Then you know this! Zappos has a hundred different ways of viewing the shoes. And reviews. The reviews help. By and large, this person might have hated them, but that person also had extra narrow, flat feet. I have neither. The 300 people like myself without narrow, flat feet loved them, so there is a strong possibility I might also love those shoes. But you never truly know how that shoe is going to feel to you unless and until you try it on and walk around in it.
Our life perspectives are a lot like those shoes, I think. We can read about a type of life – in National Geographic, for instance – the Bushman of the Kalahari ekeing out their existence in the harsh elements of the desert. The journalist will write about the Bushman much like a Zappos reviewer will write about the shoes. It’s a glimpse, a snippet, a look into a life that might be coloured by the journalist having extra narrow flat feet – or a remarkably narrow minded world view that is prejudiced by belief systems.
You can get an idea of what that life might be like over time, by reading more accounts. Accounts by the Bushman themselves are what matters most in understanding their life – they are the ones who actually own the shoes, after all. They walk in them daily, they know how they feel to their own feet.
This is all an analogy of course.
I’m not even sure if Bushman wear shoes.
My point is simply that noone really knows a life unless they live it, and glimpses into another’s life are best viewed from the first-person perspective.
The stories of minority groups are often told by others, others who may be allies and who want to empower the people within the group, but who are not actually wearing the shoe.
Within the disability community, stories are told strong and loud by parents through their blogs and articles, stories meant to be a part of the disability narrative, stories that are those of an ally that seeks justice, access and equal opportunity. Or other things like inspiration. Or they endeavor to show the value of their child, battle prejuidce and stereotypes.
As wonderful and needed as these stories are, they are not the stories of those who are wearing the shoes. They are the stories of those who have tried them on for a short time by virtue of walking next to a person who is wearing the shoes.
We need the stories from people with disabilities
We need the personal narrative of a life lived with a disability. Allies will walk a million miles next to us and never know how it truly feels to wear our shoes. That’s the good in the shoe as well as the bad. It’s more than the apparent callouses and the blisters and the ache that the shoes may give us; it’s the intagible and inexplicable beauty of the lightness of the shoe as well. How softly it might tread, the richness of a blurred world that seems a dreamscape. Or it’s the perspective of seeing the world waist-high, the wind in your hair as you roll swiftly forward, feeling the power of nature at your back. It’s the lens that we with disabilities place over our experiences, because while disability is so many things, at its essence, it is a way of experiencing the world. It’s a way of seeing, hearing, feeling, touching, sensing, connecting, moving, thinking.
We need these stories, the stories of our lives, stories of our experiences. We need our personal narratives out there. We need our own reviews of our shoes on Zappos.
The Disability Visibility Project
Alice Wong has started the Disability Visibility Project in Connection with Story Corps, seeking to record the narratives of people with disabilities.
The objective is simple: record the stories of people with disabilities from all around the United States.
How to participate in StoryCorps is HERE.
If you have a disability, I can’t encourage you more to GO. Sign yourself up. Share your story. Get your voice – your review of your shoes – out there.
If you are an ally: of you are a parent, sister, friend, lover, child, auntie, boss or whomever to someone with a disability, please share the news of Story Corps and the Disability Visibility Project.
Help us get our voices heard.
We need our stories.
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Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
