What part of “I have a disability” do you not understand? As I get older and have to face my Cerebral palsy on my own I feel like I have to keep in mind how people don’t understand what it is and how it affects me. Why is it my job to remember “oh you don’t know who I am!” I should not have to tell people about it again and again if they are people who I work with every week. What part of I have a disability that will not let me do things as fast as others do you not understand? I would love to stand up and just say it to some people in their faces. It’s a very big thing for me because I am still learning how to understand it myself. I know that some people don’t understand it and really don’t care to understand it. There are others that say they want to understand it, yet when it comes time to face it they just run the other way. Some times I have to tell people over and over again about it. Most say they get it but don’t really get it. How many times do I have to say it. I”m getting so tired people and upset with having it and having to remind people who I need help with this or that. Some of the people who I have to remind again and again are myself, doctors, people who I work with and just the different people I see.
Here is a good example Say you hear about this really good food truck and the food that everyone is talking about is just out side and is called @#@!@#$$#@@@. You go out side and everything you see is just that @#@!@#$$#@@@ all over the place. There are so many people around and you have a hard time reading what the food is because you can’t read all the things that are around you. So you come back and people ask if you found the good food. You have to say know because you could not find it. However in your mind the thoughts are why can’t you just read the stuff? why can’t you see around the people. It’s hard and I know most people would say to me that they feel sorry for me. Or the next time they will come out to help and the next time happens and know one is there helping you. The food trucks are out side every day and I don’t go to them because I can’t read the trucks and I feel so bad that I sometimes just get so mad at myself and the disability. I can’t read the food trucks and I can’t do some things about it.
I have been talking about having my disability for a long time. I have even had to remind my doctors that I have a disability and I can’t do this or that on the fly. Some of them are people that I have been seeing for years now and I think because I am so good at hiding the disability when I get confused and don’t understand what is going on around me they get mad at me because I don’t understand what they are asking.
I don’t like talking about it every day and I would love to just blend in with others but can I? I feel like I have a target on me at all times when I try to talk about things that have to deal with everyday life most people get it. However if I start talking about how hard it is to have a disability and how I am learning about it and the baby steps that I am taking. People think I am just a problem person and don’t understand why I do this or that. People forget it’s hard for me to even take the steps to move forward. I think people don’t see that it might be a baby step for me. They see it as me being lazy and don’t want to work on getting better.
There are times that I feel like if I could some how get into others dreams that I could help them to see how hard it is for me to take two steps forward. You know become them and have them had my disability and let them try and be me. I know I can’t do it but it is something that I do think about when no one is willing to just hear what I have to say or when people think they know and really don’t. Yes I know that I should not wish anything on anyone, but there are the days and moments of days that it is the only thing that gets me through those times when know one knows what I’m really going through.
If there is anyone that I think that might know what kind of life I have it would be my parents and sister. However, now that I don’t live at home and am not right under my parents any more it’s hard to say if they get what I have to go through on those really hard days. I know when I was little my family knew what I had to do both in side me and out side me to make my world work like everyone’s around me. I am glad that I was able to have them when I was growing up. Now it’s a bit harder for me to let them see how hard it is just because I don’t know how to show them. I don’t what to be a Debby downer, so I don’t let them see it all the time. Then there are times that I am having a hard time understanding it myself.
I might have a disability and it might not be what others want of me but because I have it I can’t just do everything like the next person. I am going to need more time to get all my eggs in a roll. I might not be able to do things like the next person. It’s going to be harder for me. And lastly, I am willing to work with you but you need to be willing to work with me!!!!