Disability Wisdom
Jessica Wallach in front of her artwork as Massachusetts General Hospital
Disability wisdom: for me there are three ways I experience having my body, ways I find myself as a person with a disability, how I know I am disabled…
Just me: A place of connection and flow, where I am just a person creating and connecting. Where my body and mind are just they way they are.
Just my body: A place where my body has limits, can’t do what I want, I get exhausted, my hands shake and I just don’t have the fine motor skills I want and need to complete a task in the way I want to complete it, I get dizzy, steps are hard, or I am just too exhausted to do things…sometimes I think of this as the ways my body has wronged me and usually it is the result of the brain damage from not breathing on my own at birth…it’s where my body gets in my own way…in some ways this is what it means for me to be disabled and in some ways this is what it means to be human. The body limits and gets in the way of each of us…and as my friend Priya Raye of DIYAbled says, this is what drives much innovation, not just accessibility devices for people with disabilities, but accessibility for all people, think about trains, plans, cars, the internet, sidewalks, street lights, all of these make the world more accessible to many, many people.
Me and the world: a mis match as author, artist and activist Sara Hendren : Then there is a place where when I am using my scooter or people hear me talk or the expectations of spelling and grammar
When I am on my scooter at a festival in a grassy meadow in the morning, I can’t get anywhere or when I come to a door and I need help to navigate opening it, even when there is an automatic opener but the button is in the wrong place
Or when I give a talk or meet some new and they notice… there is something different about my voice. Often they can’t figure why it’s different, but I can tell they think about it. Then they decide if they think I am smart or stupid, if I am worth listening to or if I should be pitied or praise for doing every day activities or condescended to, but not seen as a leader as someone to connect with and figure out the world with.
And then there is the expectation of communications, spelling and grammar. The amount of energy I spend to fit into a world not of my making…I can’t tell you how many times colleagues ask if I use spelling and grammar checks…I do. Many of my misspelled words are not caught…they assume it is an easy task for me to spell like they do, or that it is a personal failing that is easy to correct and that it is needed to be corrected. But I have worked my whole life to spell and write correctly. I hear words differently because of the way I speak, it is grounded in my body. I spell in ways that spell check does not get. I am not lazy, I work hard and at some point it is just insulting to be told for the thousands time to use spell check.That somehow the project we are working on is far more important than the person.