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When I Struggle With Patience as a Young Man With a Disability

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I am an impulsive man by nature. My instinct has always driven me to go forward fast and loud with no regrets. Patience is difficult for me, because from the moment I wake up I want to change the world, and make my cerebral palsy into something extraordinary…. Then reality hits. I’m in a state that’s dead broke and ranked 47th out of 50 in terms of disability rights. I wonder “will the world see my disability the way I see it?”

I don’t like to wait, I never have, but in the last couple of years I have learned to be more patient, because my life is more difficult than that of others. It’s a challenge I’m willing to accept.

Envy is a terrible thing. Sometimes I envy able-bodied people, not because they can walk, but because they can do anything they want on their own time, without a schedule. I just want to create my own schedule where I can be free and not have personal care aides putting me to bed every night. Most of the time, though, I accept my weird schedule and have recognized this is the way life works. You have to move forward and accommodate others, if they are going to accommodate you. Sometimes I act like a little kid and try to stay up longer, but most of the time I’m passed out by 11:30 p.m. anyway. So there are no problems to speak of.

Moving out on my own is an obsession, and has been for the last five years.  I wanted to move out immediately after I graduated, completely oblivious to the difficulties that were right in front of me. As time progressed, that envy bug kicked in again, as I watched my siblings move out before me. However, I began to realize there weren’t any options available. There was a place in Naperville, but that’s too far away from my job, and the rest of the housing I qualify for in Illinois is either government subsidized or in Evanston (ewww). I cope with my reality by going to LaGrange or my favorite place in the world, Chicago, where gorgeous girls are everywhere.  And I’m now on a waiting list to move to a wheelchair-accessible apartment in LaGrange in 2017.  When I’m 30, I’ll be acting like I’m 19… bachelor pad!

I also struggle with patience because I have to deal with a ton of ignorance. I wake up thinking every able-bodied person is ignorant of my disability (unless you are a member of my family, my assistant or my therapist). I think it’s my job to teach every able-bodied person I know of the disability struggle, so it can be understood and viewed as beautiful. I think people under estimate me and that makes me stronger and more determined. I will continue to advocate, until I’m old and gray and even then, I’ll have somebody type out my messages for me via a futuristic computer.

My message to you is this: if you’re disabled, start advocating. Use your voice to show your inner strength and your leadership capabilities. However, be aware that finding patience in the mind and heart is a continuous battle. Thank you for allowing me to show you mine.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 13, 2016
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