The World Was Not Made for Me

When you have a physical limitation, to get through a day requires so much awareness of what is around you. How long will it take to get to meetings? Can you enter a building in the front? Maybe you have to go through the only accessible door, ending up on the opposite end the elevator is on, to go one floor above and on the opposite side of where the meeting is. Sometimes it feels like you’re being punished for not being able-bodied. If I have learned one thing, it is that the world was not made for me. The world was made for the able-bodied society, which I will never be a part of.

For most of my life, I wanted to be Superwoman. I would rather take the extra mile than ask for help. There was nothing I hated more than to have to use visible assistance like a wheelchair or a walker due to my cerebral palsy. I wore thick plastic braces and had a walking pattern that Houdini himself could not hide. When I couldn’t walk any further, I would use a wheelchair, and any independence disappeared.

Granted, I spent most of my days utterly exhausted. The wheelchair or walker became a thing of the past as I grew older, strictly to be used for utter exhaustion. But everything changed when I decided to go to college in Massachusetts. The winters were an entity of their own. I started using a walker to get around, something I was used to in my younger days. Wheels can make all the difference. Winter wasn’t a death trap anymore. However, the world was unforgiving. I quickly learned that it doesn’t matter what I could do or what I wanted. Independence was dependent on the kindness of other people and the environment.

If the door wasn’t automatic, I could not get through. It is quite a challenge to open a door and then keep it open while pulling a walker through. My other choice was to wait on the off chance someone would come by. The situation I described in the first paragraph was my daily walk to class for a semester.

Before this, I never wanted to be a burden. I wanted to stay under the radar as much as I could. My mother would be angrier than me at someone in a handicapped parking spot without a sticker. Sometimes it felt like everyone was watching me. Before, I didn’t know the exclusion of not being able to go outside on a snow day. I didn’t know that one automatic door made all the difference. I didn’t know how limited the world made me. The lack of accessibility in the environment just means that the people I am with have to do more work on my behalf or go without me.

Anger comes at this realization because it makes me feel “less than.” People with disabilities should be able to go anywhere they want without being hindered by the environment. There are many variables to this such as the weather, but I don’t want to be stopped by a lack of a ramp. The Americans With Disabilities Act has only been in existence for the last 25 years. Progress is going to take time. Buildings are being made with accessible points, but what about old buildings? America is actually ahead of the game in this area. I don’t want to complain, but how do we as people with disabilities fight for our rights? Where do we balance?

This has got to be one of the hardest topics I’ve written about so far for this reason. I still struggle to find a nice middle ground. I’m content, but I don’t want to settle for the status quo. We deserve to be able to go about our lives. Don’t settle. Disablities do not make us less than. We are different and that’s great. Ask for what you need and if they don’t listen, keep asking or change direction.

I was on the committee for my college’s Beyond Disabilities week. One of the things we promoted was the Accessible Icon Project, which is working to change the handicapped symbol to a person in a wheelchair in motion. New York has adopted the icon for all handicapped parking spots. Change takes time, but as the saying goes, “Be the change you want to see in the world.” Maybe the world was not made for us, but we can help change it.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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