Today, thousands of people will celebrate the ADA, but I wanted to take a moment to also celebrate my big sister and everyone else along the way who has been there for me. You guys keep me going and keep me smiling, even on the bad days. This post is for you.
Last week my friend Ava, who is awesome, told me to check out the blog of a friend of hers named Mia Mingus. I love reading other people’s blogs, especially when they relate to the disability experience; so I checked out Leaving Evidence and was immediately moved. In the post I read she was talking about inaccessibility and how it is so much more than just the physical structure of a place that makes things inaccessible to those of us who live with a disability. She says “The weight of inaccessibility is not logistical. It is not just about ramps, ASL interpreters, straws and elevators…it is an echoing loneliness, part shame, part guilt, part constant apology and thank you.” I can’t remember the last time I have read something and immediately felt as if the author was talking to me and completely understood me.
My whole life I have repeated two phrases over and over again every day. They are “I love you.” and “I’m sorry.” I say “I love you” because life is fragile and too short and I don’t want to leave this world without letting people know how much they mean to me. I say “I’m sorry” at some point or another if I feel like I am inconveniencing other people. I miss my paratransit and have to call a friend because waiting for the next one to get here will mean another hour in the heat, I say I am sorry. At a wedding, a stranger has to get up and push in your chair so that I can get by, I’m sorry. I drop something and can’t pick it up, I am sorry. I miss an important call because I can’t get there before it stops ringing, I’m sorry. I fall, I’m sorry. I wake Tom up because I can’t roll over, I’m sorry. I need help with my shoes when I visit my friends, I’m sorry. my sister has to help me go to the bathroom at a party, I’m sorry. And it isn’t just a word. I really am sorry. I feel guilty, and if someone shows even the slightest sign of annoyance at my requests for help I will avoid them because I am sure that they hate me and I never want to inconvenience them again. Eventually, I start to imagine these signs, and I begin to avoid asking for help. But I can’t do that, not for long anyway. I don’t want help; I need it, like people need air. How long can someone hold their breath? Then they feel bad, for making me feel bad and now there is this giant thing hanging in the air between me and them and it’s called “I’m sorry.”
At my birthday party this year, there were four of us that needed help at various points throughout the night. This help was provided without question, without making a huge show of things, and each time each of us said “Thank you” and “I’m sorry” more than once. At one point my friend Stephanie came up to me and said, “Everyone keeps apologizing and thanking me, make them stop.” But I couldn't, because if I did, it would only inspire guilt which is usually followed by “Really, I am so sorry. I appreciate your help.” This, I think, was the one thing she didn’t want to hear.
I am so lucky to have the friends and family that I have. People who help so easily, who never make me feel guilty when I need something. Who will, in the middle of a party, will put down a drink quietly without a roll of the eye or a sigh of annoyance that might make the guilt begin to bloom; who find the humor in my squirrel bladder and slow steps, not the inconvenience. Who answer my “I’m sorry” with a “yup”, or a “no problem” and most importantly, a smile. These people are my heroes.I don’t think they realize that a large part of what I have done and what I will do is because of them. Because of their willingness to help, and because they never let what I need get in the way of who I am or what I mean to them. So for those of you that have carried me up countless flights of stairs, driven me to what amounts to thousands of miles, taken me to a million bathrooms and so much more, I’m sorry. Thank you, and most importantly, I love you.