I Am More Than A Chair

by DJ Kimble

about the author:

DJ Kimble is 41 years old with Duchenne. DJ is the PAAC Secretary for Parent Project Muscular Dystrophy, is one of the hosts of The Duchenne Life and is one of our contributing writers. DJ has immense life experience and communicates with Eye Gaze Technology. He can be reached at DJ.Kimble@FamilyFriendsAndDuchenne.org

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I Am More Than A Chair

A difficult part of living life as a person with Duchenne is trying to get others to see past our chairs and to see us for who we are.

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Like Every Other Kid…

As a young child growing up, I never really had any issues with being accepted. I still looked like every other kid…yes I did walk a little differently, I couldn’t do everything that the other kids did, but I was still the same. It also helped that I grew up in a small community where everyone knew everyone and looked out for everyone.

The elementary school I went to was very small
and it was actually kindergarten through the eighth grade. So, not only did I make friends with the kids my age but I also made friends with much older kids as well. I wouldn’t say I was really good friends with them, but they were very friendly.

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Staring at Me, Pointing at Me, Avoiding Me…

As I got a little older and started having to use a wheelchair, I did notice that others did start to see me a little differently. The change wasn’t really apparent when I was in my community and with my friends.

The times when I would really notice was when I would go to the towns nearby. I would notice people just staring at me, pointing at me, whispering to themselves or just avoiding me altogether. It did bother me a good bit because I was still just a kid and I couldn’t figure out why things had changed so much. I was still the same person, the only difference was that I was using a wheelchair to help me get around.

I began to get very anxious about things when we would go out to do anything because I was always worried about what others were gonna think about me. It wasn’t the only thing I thought about, but it did take up a vast amount of my thinking.

My dad would always get upset with me because I would get anxious and very unsure about going out. He couldn’t understand why I worried about what others thought. I do wish now that I’m older that I would not have felt that way, but when you are just a kid you only know what you feel, the understanding doesn’t matter.

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If It Wasn’t for My Friends…

When it was time for me to move on to junior high and high school it meant that I was going to a different school – a bigger school with a lot more kids that I didn’t know and teachers that didn’t really know anything about me. Only one or two knew me from when they taught 7th and 8th grades at my elementary school.

This was a very daunting task for me because it wasn’t just a new school that made it hard, but I had pretty much lost most of my abilities. The one saving grace that I did have was that my best friend, Clay, had agreed to be in every one of my classes for seventh grade so that I would have someone I know with me to help me with things.

Clay was a very dear friend of mine. Not only did he help me with things physically, but he did something much more important for me: he allowed others to see me as just one of the guys. That I was cool, funny and just as normal as anyone else was. I will always be forever grateful to him for that!

I made many new friends that also helped me throughout school. If it wasn’t for my friends wanting to help, I probably would not have been able to finish school on my own.

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See Me as an Equal

Yes, it was very helpful to have friends to help, but there were also plenty of others that just couldn’t get beyond my chair. They wouldn’t even acknowledge me, let alone see me as an equal.

I became very self-conscious about myself and would try to make everything about me perfect in the hopes of having others see me and not my chair.

I didn’t know it at the time, but I became very OCD about everything. If it wasn’t right, I just couldn’t deal. It would upset me so bad that I would just start crying before going to school because I knew people would notice and not see me as an equal.

One of the hardest parts of not feeling like an equal was when about half of my friends that I went to grade school with (and were quite close to), wouldn’t even acknowledge me anymore. They were worried about what their new friends would think. They all knew how much I valued them as friends but it still wasn’t enough for them, I suppose!

Thankfully with the help of my true friends, I was able to finish high school and that was a wrap to that part of my life…so I thought.

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Adults Aren’t Much Better

Perhaps I was naive, but I thought that once I became an adult it would be easier for others to see beyond my chair and see me instead. I was unfortunately mistaken and have found that adults aren’t much better than any other age group.

As an adult, I have become more understanding towards others, but that doesn’t seem to correlate in how others see me.

The only thing that is different is that I can no longer drive myself and that I have a ventilator. I still notice people staring, pointing, whispering and even making fools out of themselves trying to avoid me.

Thankfully, as an adult, I have learned not to really give a damn about what others think of me or my disability and it really feels good. I look at it as their ignorance and their loss. I know that I’m a good time, all my family, friends and other acquaintances know that I’m a good time and they are the ones missing out on knowing me.

I’m not saying this mindset makes it any easier at dealing with not being seen for who I am – because it doesn’t – but it does allow me a little piece of mind knowing that it’s not my fault for how others view me.

I do wish that others could just get past our chairs to see us, because they would know that those of us with Duchenne are just great people, who enjoy all the same things in life that everyone else enjoys. I know that if they would just give us that chance that they would never regret that choice to just reach out.

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A Few Suggestions

I would like to end this week’s article by sharing a few do’s and don’ts for those who are unsure
about reaching out to us.

• If you would like to speak with us or just want to ask about our disability or specifically about Duchenne, please do so. We absolutely love talking with others about ourselves and also sharing with others about Duchenne. I promise, you will be glad you did.

• If your children notice us and they ask you what happened to us, please feel free to explain to them – or even allow them to ask us. We would be more than happy to answer their questions. It doesn’t bother us in the least. Children are the most understanding and accepting people there are and if we help them to understand, then we help them to accept others.

• If you do speak with us, please don’t ask the person with us if we can understand what you are saying to us, because we can. Yes, there are some with disabilities who aren’t able to understand completely but they understand enough to appreciate you taking a moment to speak with them.

• Please, if you want to talk with us, don’t assume we are hard of hearing and just start speaking really loudly to us and have everyone looking to see what’s going on. Not only does that embarrass us, but it also embarrasses the person speaking incredibly loudly.

• I would like to finish with one last don’t. If you see us coming, please don’t become an air traffic controller and clear everyone out of the way. We are in a wheelchair, not a 747. People will move, but please feel free to open doors to allow us in – that is always a huge help.

Please know that these tips are very important to us and by no means am I trying to offend anyone who means well, which most do. It’s just that we like to be seen for us and not our chairs. It means absolutely everything to us to be seen as the equal we are.

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It Means a Lot

I would like to thank everyone as always for taking the time to read my articles. It really means a lot.

I also hope that my article helps bring a little more understanding to this aspect of our lives because it is a very important part of our lives.

I would also like to thank Family, Friends and Duchenne for once again allowing me a place to
continue sharing my journey with Duchenne!!

DJ