Stuck between ability and disability.

15 Jul

Though I have Cerebral Palsy, I’m very much of an inbetween. I’m not fully able-bodied, but I’m not severely disabled either. I know what it’s like to feel as if I am holding other people back due to the things I am unable to do. However, I also know the feeling of being held back myself by those who are more severely disabled than myself. It’s not as if I am unable to do everything. It’s just that I may have to adapt the way I do certain things in order to participate in them like everyone else. Because my abilities fall in between the abilities of able-bodied people and the abilities of people with more severe forms of Cerebral Palsy, I’ve never felt completely comfortable in either group.

When I was a freshman at Wofford College, before I made the decision to transfer to UNC Asheville, there was an older disabled man who worked on the staff who had Cerebral Palsy. Though I never asked him if he had CP, I assumed he did because the way he walked was so similar to how I walk. I noticed him on campus. My eyes would catch his gait, and I’d look away, feeling as if I was seeing a reflection of myself. Again and again, I caught myself doing the same thing I hated in others: visibly looking uncomfortable.

One night while having dinner with friends in the cafeteria, the disabled man came over to our table. He looked at me, introduced himself, and commented that he had wanted to speak with me for a while. Though I acknowledged him and said hello, I became incredibly uncomfortable and quickly turned back to the conversation my friends were having. Eventually, the man walked away. Though the situation shouldn’t have freaked me out, it did. I hated that he approached me because of my Cerebral Palsy. I had wanted to fit in with my friends, and his presence made me feel as if I stuck out.

My perceptions have changed a lot since the experience that night at Wofford. Since then, I have started a blog, written about what it’s like to live with Cerebral Palsy, and have become much more open about discussing my experiences related to my physical disability. Though I don’t think fondly on my reaction towards the disabled man at Wofford, at the time, I couldn’t have even fathomed beginning my journey of self-acceptance. I was so far from even starting to feel comfortable in my own skin. Back then, I felt as uncomfortable with myself as I felt every time I saw the disabled man on campus.

Being stuck between fitting in with able-bodied people and those who have more severe forms of CP is continually frustrating. I do not necessarily have what is termed as “mild CP” because my CP noticeably affects my walking and my muscle tone. However, I am able to walk independently without assistance, which is not always the case for those with more severe forms of CP. I have recently joined a Facebook group for people who have CP because it’s becoming more and more difficult to describe the concept of chronic back pain and other frustrations to those who can’t even begin to understand what it’s like living with a physical disability. Therefore, I thought I’d benefit from a “support group.” However, within the group, I am reminded again of how much I don’t fit when I see the posts about power chairs, the frustrations of not being able to drive or not being able to live independently (since I am able to walk, drive, and I’ve lived on my own since I was 16).

On the good days, I’m comfortable with my able-bodied friends. On the bad days, when my back pain is worse than normal and all I want to do is cry, I wish I knew someone who was also stuck between ability and disability who understood my frustrations because at least we could be stuck together. However, this “stuck phase,” aggravating as it may be, is where I am, and there’s not much that can be done to fix that. I can’t make myself more able-bodied (no matter how much I wish that were the case), and I’d never choose to be more disabled than I already am. I’m just me, and even though it’s really hard, I’m trying to learn to be okay with that.

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12 Responses to “Stuck between ability and disability.”

  1. terriedominguez July 15, 2013 at 9:28 am #

    Amelia, I can relate to you. I too am an in-betweener, although I think you are better off than I am in terms of walking. I can walk on my own, however, I have a huge fear of falling that is currently getting in my way. As a kid, I could run and play with the normal kids, but I had to adapt and do things differently. I still have a hard time with acceptance. I sometimes catch myself in the mirror and see how I walk, and am surprised. I’m not as bad as I used to be, I have been better at accepting my limitations

    I’m not sure what the cause of your back pain is, but I found out what fixed mine. I now go to a chiropractor every three weeks, and that has helped not only my back pain, but my balance and walking ability as well. Maybe you’d benefit from seeing one too. I had no idea how much pain I was in until it was gone.

    I love your blog, as I can relate to so many things you talk about. Keep it up, and I look forward to reading more. You’re not alone in the “in-betweeners”!

  2. ashokbhatia July 16, 2013 at 1:41 am #

    Well articulated. Most often, we realize the real value of our body when something goes amiss.

  3. Ali July 16, 2013 at 6:17 am #

    That is so me!
    http://www.mydisabledlife.wordpress.com
    I know EXACTLY how you feel. That is a lot of the reason I love reading your blog 🙂

  4. N July 16, 2013 at 1:12 pm #

    Yes! Oh my gosh, FINALLY another person who knows exactly how I feel. I think I’m pretty similar to you, ability-wise, and I’ve always felt like I’m stuck in some weird “twilight zone” where I’m not quite “disabled” enough to fit into that world, but also not completely “normal” either. I mean, don’t get me wrong— I know that I’m so incredibly lucky to be able to do all this stuff and be so high-functioning and everything, but sometimes it feels like I kind of fall through the cracks and don’t really fit in anywhere. So I either have to regress and not work up to my full potential, or constantly work my butt off and try harder than everyone else just to fit in. And for me, that’s kind of hard to deal with. Thanks for letting me know that I’m not alone.

  5. Coleen September 14, 2013 at 8:26 pm #

    Hi, I’m Coleen. I’m 16 and I’m from the Philippines. I am an in-betweener, too and now I feel really amazed that I finally found people like me! Cerebral Palsy Awareness is not really big in our country so it’s very hard living with it as an “almost”. I think some people are scared about the situation because they are unaware that there are people like us. I’ve experienced different forms of bullying since my first year in high school, fortunately, I’m now in my 4th and last year. Every year brought about changes. Last year, while in class, there are times that I have to put up my foot on a chair when my leg hurts. My classmates called me a drama queen for it. Now, I wear sneakers to school instead of black shoes…while in a long plaid skirt. To those who don’t know better, I’m a little rebel breaking the rules. It’s really hard to find people who’ll listen and really understand and I’m so glad and thankful that there are people like you who speak out for little voices like me who wants to be heard to. I’m finally going to be a college girl, too, next year(FINALLY!!!) and I hope I’ll be able to do great things like you. I really want to spread awareness about people like us, not just those with Cerebral Palsy but other conditions, too. I know it may sound too ambitious but why not try, right?

    I know this comment is veeeery long (sorry!), I don”t even know if you’ll read it, but I’m just so ecstatic. As N put it in the previous comment, “Thanks for letting me know that I’m not alone.” Have a great day!!!! 🙂

  6. Coleen September 14, 2013 at 8:30 pm #

    Oops, typo. “…who wants to be heard, TOO.” Sorry.

  7. oawritingspoemspaintings October 3, 2013 at 9:45 am #

    It is lovely to have been given the gift of awareness toward our growth in life… lovely post!
    Wishing you the best in the future 🙂

    • nellie November 6, 2013 at 10:16 am #

      Thank you for your comment on my blog; I was able to enter another world where I could read the life of someone who was facing almost identical issues that I was myself. I think we have had a lot of similar experiences from people staring to wanting to be considered normal and the frustrations of being mislabelled. I also think we have a similar attitude towards life; although we have different health problems.

      • ameliaclaire92 November 6, 2013 at 2:20 pm #

        Thanks for reading. 🙂 I was so happy to come across your blog.

      • nellie November 6, 2013 at 2:49 pm #

        I was happy to read your blog too. Some of the experiences that you wrote about I was thinking to myself: this girl has got my attitude. I added you on Facebook, I hope that wasn’t too intrusive.
        It’s nice to meet a fellow journalist too

      • ameliaclaire92 November 6, 2013 at 2:54 pm #

        Would you remind resending the Facebook request? 🙂

  8. Levi June 26, 2014 at 11:01 am #

    Im right where you are, in between. I am what my doctors call a partial paraplegic. I have drop foot on both legs. I was searching for an article in hopes to find someone that could relate, and maybe get an idea of how to cope.. A skill I lack in many areas of life. Thought I’d say hey, and that you’re not alone!

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