An Open Letter

An open letter to the world about living with a disability

I am shy until you get to know me and then I don’t stop talking. I worry too much and stress over the little things. I’m quick to laugh and cry too easily. Some tell me I’m an adrenaline junkie because I love fast speeds. I’m gullible but it’s because when I trust someone I’ll believe most anything they tell me, even when it’s totally outlandish. I’m stubborn enough to know what’s best for me and not let others change my mind. Music speaks to my soul. My friends mean the world to me. I have Cerebral Palsy.

I have a disability and I’m a person too so please treat me as one.

            Unfortunately, more often than not, people only see my wheelchair (because it’s pretty impossible not to see) and nothing else when meeting me. It’s like our brains are incapable of going ‘Hey, I met some nice lady today. She was in a wheelchair but blah blah blah’ without getting hung up on words like wheelchair, overweight, disabled and all the connotations they carry with them.

            My disability and wheelchair are not all I am.

            Somebody recently asked me what it’s like to have a disability and be in a wheelchair and it was hard to answer because I’ve never known any different. What I have decided is that if I could walk I would be a runner and that if I could see out of both eyes I would never sleep. Instead, I get my thrills from going down hills faster than some people would like and people watching because humans are fascinating creatures.

            Make me laugh and you’ll never get rid of me.

I love to go for walks or even just run errands and go new places but getting there is often an adventure in itself. Next time you’re walking somewhere, pay attention the cracks and bumps in the sidewalks or how skinny they are. Notice how the curbs on sidewalks only slope down to meet the road part way or not at all. Have you ever thought about whether a door is wide enough or whether a building has an elevator in it? I spend a lot of time in elevators and going backwards through doors and up and down sidewalks.

I hope people know that I’m not criticizing them for not thinking about these things or for being ignorant because I’m not. I just want people to understand.

Please, don’t take anything (especially the small things) for granted.

I do struggle but I’m determined to live my life to the fullest. I want to take the good with the bad and be treated just the same as everybody else because I’m not any different, not really. Some things have happened recently and it’s been suggested; no, it’s been said that I can’t take care of myself and that I need help. That makes me really sad and maybe a little bit angry because I’m trying, damn it. People keep telling me that having a ‘personal care assistant’ to help me will make me more independent but I just can’t see it. How is having somebody around to do things for me instead of making me learn to do them or do them better going to help me? I need to be responsible for taking care of my things and myself. I need to be able to have responsibility.

I need to fail miserably sometimes. I need to be told everything is going to be okay.

It’s human nature to be interested in or curious about others, especially when they look different, and want to ask questions because of that curiosity or help somehow, but I’ve learned that most people don’t ask questions or anything else because they don’t want to be rude or intrude. They do, however, stare. Staring isn’t nice, so please stop and think about how it would make you feel if you were the one being stared at and whispered about.     

Please, listen to what I’m about to tell you: Ask questions if you don’t know the answer and ask to help if you really want to help because I’ll always give you a honest answer and 98 percent of the time I’ll let you help me. The two percent of the time that I decline help is because I’m just going around the corner or down the hall not because I don’t appreciate the help.