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Thursday, May 14, 2015

Beyond My Wildest Dreams: Thoughts As I Graduate From College

This weekend, I will graduate from the University of Illinois at Urbana-Champaign, 874.73 away from home. I have always believed in myself, but never in my wildest dreams did I imagine this adventure being a reality. Throughout my whole life with cerebral palsy, I have depended on others to comb my hair, dress me, bring me to the bathroom, and bathe me. When you need others to be your legs and arms, your body and your schedule settles into an almost rhythmic routine with the people who help you. For me, that person was my mom. Although other people had assisted me in my life, no one else knew my patterns as naturally as she did.
When I was finishing high school, going away to college seemed improbable. I knew that I was academically prepared to go any number of places, but my physical reality was daunting. When you have someone who has cared for you with unfailing devotion for eighteen years, the thought of placing that trust with anyone else is frankly terrifying. I assumed that I would go to school and come home at night, which can be an excellent option. But in my heart of hearts, I knew I wanted something new.
I was itching to have the experience of living away from home, like I saw so many people my age doing. I adore my parents, but when you have a disability as severe as mine, you spend a ton of time together, and independence cannot be taken for granted. As someone who is unable to drive, I depend on them to be picked up and dropped off. They know what I did today, because they dropped me off. They know what I ate today, because they cooked it. There aren’t too many surprises. Chances are they know what color underwear I wore today, because, well… they put them on me. I remember thinking, “How cool would it be to be able to call home and tell them what happened last night, because they weren’t there?” Even the thought of last night’s dinner being a mystery to them seemed rather thrilling.
Unfortunately, the resources for people with severe physical disabilities are limited. Especially when you need a high level of physical care, there are more questions than answers, and you generally won’t find a “Getting Your Butt Wiped” resource guide at the college fair. So, I had to do a great deal of my own research, and after poking through many articles and blogs, here I am, living in a dorm for people with severe physical disabilities. Here, I have hired and managed a team of personal care assistants (PAs) to accomplish those day-to-day tasks that most people take for granted. Supervising a small baseball team of caregivers has been exhausting and one of the most challenging things I have ever done—but it has also been rewarding, and a reason to be proud… roughly 2,688 hours of “PA shifts” later.
They say it takes a village. It really does. This wouldn’t be happening without my beloved family, my friends, and all the PAs who have helped me over these past four years. I leave here truly in awe of each of the students with whom I have shared my living space. Some of us may have our personality differences, but each one has taught me something. Each one, like me, has known the frustration of living in a world that frequently has low expectations for people with disabilities. And I am proud as each one accomplishes something beyond his or her wildest dreams.
This adventure has almost as much relied on the kindness of strangers, who may not even remember me. But I remember them, and their love too has carried me to this moment. Just to name a few:
Max, the cheerleader, who pushed me home when my chair battery died.
A group of students whose names I can’t recall who pushed me home when it died again.
The elderly man in a Chicago Bears hat that pushed me across the street when my chair got stuck in the snow.
Matt, from Texas, who held an umbrella over my chair in the rain.
Every Walgreen’s customer who has waited patiently behind me in line.
Derek, who repaired my wheelchair lift, and returned the tip, so I could “buy an extra Christmas gift for my mom.”
Although I may have met you just one time, I celebrate you for affirming the presence of good in the world. Without you, my chair may still me stuck in a hole on Sixth Street.
            The word inspiration will be thrown around a lot when people read my story. They will mean it as a compliment. But I will tell those people this: if I am going to inspire you, I don’t want it to be because I did the same thing people without disabilities are expected to do by default. I want it to be because I helped others see that people with disabilities deserve the same opportunities as everyone else. I don’t want people to call me a hero for getting out of bed and going to school like my peers. That reflects the painfully low expectations for people living with disabilities. Rather, I want them to recall a person who challenged their preconceived notions. Who made them think in a way they never had before. And someone who helped society move towards a day when people in wheelchairs graduating from college are no big surprise. I am not a hero. I am not particularly brave. I am just a person who went to college and had a great time.
            If I am lucky, my story will reach someone, who like my younger self, feels put in a box by the world’s assumptions about “the kid in the chair.” Wherever that person is, I hope that my life will give him or her this message:
You are enough, just the way you are.
Set the bar high for yourself, and always aim for more than the world says you deserve.
Keep your head up, and through the good, the bad, the ugly, and the absurd, remember that you are disabled and you are beautiful. Those concepts are not mutually exclusive.

You will accomplish great things, in spite of AND because of your disability. Your disability is not all of you, but it is part of you… and no part of you is without wonder, without purpose, or without love. I don’t know your name, kid, but I know you can do it. Now get out there and kick some butt.

Image: Me in my orange foam "I" hat at the football game, smiling. Let it be known that I still know nothing about football.

Thursday, May 7, 2015

Access Is Always In Season

Those summer days are approaching. Summer is one of my favorite seasons. I enjoy being outside, cruising in my wheelchair on the sidewalks. You may even find me in a pool occasionally, if the water is warm enough for my creaky bones and I can summon the energy to be wrestled into a swimsuit. I use the term “swim” very loosely. For me, it mostly means being held in the water, clinging to the wall because I am deathly afraid of drowning, and kicking my leg periodically so that I can enthusiastically convince myself that I exercised today. But summer is not just about sunscreen, barbecues, and pool parties. It also means the air conditioner is on. This may seem like a good thing, but for many of us wheelies, and others with mobility impairments, it probably means something else sinister: the automatic doors are off.
I cannot even count the number of times that I have rolled happily to a store on a warm day and arrived to find my beloved automatic doors…. unresponsive. It is not uncommon to tell the shop owner or clerk that their door is broken, and to receive the following reply: (sunny smile) “Well, you see, it’s hot out. So we turned it off, to keep the air conditioning in.” This reply is usually seen as perfectly logical and said speaker is probably looking for praise for his defense of the environment. Now, don’t get me wrong. I am very much in favor of saving energy. But here’s the thing.
Access should not vary according to the weather. The arrival of summer should not mean that my ability to access stores and restaurants should be turned off. Sure, someone can open a manually operated door for me. But that takes away my independence, and leaves me reliant on the help of a stranger or whoever may be with me. I treasure the opportunity to go off on my own some days and to be assured that I will be able to navigate successfully.
If I door I can normally operate with a switch is turned off, I am left, crestfallen, to make puppy dog eyes on the other side of the glass until someone feels like grabbing the door. While I appreciate anyone who is willing to hold a door, I much prefer the chance to open it myself so that I can come and go as I please. I understand that shop owners value their air conditioners, but my disability does not come and go with the weather. Never before have I seen a weather report stating cloudy, with a chance of wheelchair. My wheelchair and I are together, in fair or foul weather. Perhaps these shop owners have been subjected to a crappy disability awareness program, and believe that my disability is seasonal. I am sitting here laughing, envisioning a strange alternate universe in which my disability drifts in and out according to the seasons. I can see the elementary school “learning the seasons” posters now… “Winter is for wheelchairs!” And then, bam-- with the hum of the air conditioner my disability gets packed away for the season with the awkward winter coats and snow boots. If only it worked like that. The weather reports would be a lot more intriguing. A scan for palsy levels in the air would surely elicit more interest than those boring pollen levels.

Alas, reality is that disability is “in” year round. Although I have to admit, it would be fitting if cerebral palsy were a hallmark way to welcome the fall season. For someone like me with poor balance, every season is fall season, but those treacherous piles of leaves just increase my likelihood of face planting. If disability only existed in the autumn, the jokes would be too golden. I mean, it’s called the fall for Pete’s sake! But jokes aside, I need accessible facilities during every season, regardless of the status of your air conditioner. CP is always at my side. “Winter, spring, summer or fall… I’ve got a friend” and my right to be accommodated should not go away during certain seasons. Colors, outfits, Internet memes, weird children’s shoes with wheels on them… they go in and out. I am here for all seasons, and my automatic door should be too. If a little air conditioning escapes because of it, business owners will have to cope. The next time they consider turning my access “off” I hope they will remember that disability does not come with an off switch.