Living in the Grey Area Between Disabled and Able-Bodied — Scope | Disability forum
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Living in the Grey Area Between Disabled and Able-Bodied

Richard_Scope
Richard_Scope Posts: 3,614 Scope online community team
Relaxing in a hammock

When I was in university, I had a roommate who told me that she thought all people with cerebral palsy used wheelchairs. She didn’t realize there was a whole different set of people with cerebral palsy who don’t fit the stereotypical image of a person in a wheelchair or use walking aids such as crutches or a walker to get around.

I am part of that “other” group of people with cerebral palsy. The majority of the times I disclose my disability, I get the response of “I’d never have known if you didn’t tell me,” or even the “you don’t really, do you?” Sometimes they don’t believe me at all. For that reason, I rarely disclose the fact that I have CP.

My CP is really mild. That is both a blessing and a curse. I’m grateful that I have been able to learn to play many musical instruments, and I’m able to walk without mobility aids. My limp is so mild it is often “invisible” to outsiders. But at the same time, people don’t realize or sometimes even believe me when I say I’m struggling. I don’t blame people for not always believing me when I say I have CP. That wouldn’t be the first thing to come to my mind either. The times that people do happen to notice my limp, I’ve heard the same question too many times: “How did you hurt yourself?”

Growing up, I was the kid who had very few friends and was picked last in P.E. No one seemed to understand me, but looking back I now realize I didn’t give them the chance. I wanted nothing more than to pass as “normal,” so when asked if I wanted to disclose my CP to my classmates, I said no. I never told my classmates I had CP, so of course, I looked like the weird one. I got weird looks when I had stretching casts and surgery in middle school and high school (yay for growing) and when I was using a wheelchair after surgery in eighth grade, the kids called me a faker. I must have been “faking” everything since I could get up and walk a little, but used a wheelchair to navigate the halls at school the rest of the day. To this day, I still feel a lot of shame regarding my cerebral palsy, and it’s really tough to talk about.

My parents raised me with the mindset that they weren’t going to place limitations on me. I really appreciate how they didn’t limit me. However, since I looked and was able to pass so often as “normal” in the physical sense, I feel that led to some unfair expectations when it came to my endurance and ability to function 100 per cent in this fast-paced world. This in turn led me to have some unfair expectations for myself. Since I was so “normal,” I expected “normalcy” from myself.

I was always confused (and still am) about my identity as someone with a disability. My whole life, I felt stuck in the grey area in the middle between disabled and able-bodied. I don’t know where I belong. I often don’t feel disabled because I’m able to do so much, however, I also feel like I have limitations others don’t have to face.

I pushed myself really hard in school, and I would still fall short of my peers. This was especially noticeable at the end of high school and all throughout college. This led me to fall into a deep depression and subsequently have to drop out of grad school.

I know that many people facing physical challenges, visible and invisible, grow frustrated over their situations. A while back, I came across Albert Einstein’s quote “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” I think this is an area of growth for me. I need to recognize and accept that it is OK to be different. I need to work on believing it is OK for me to live life at a different pace and have different, more reasonable expectations for myself.

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    This is a lovely blog to share, thank you Richard :)

    During school I often felt like I was in that grey area even as a (part time) wheelchair user, I wasn't "as bad" as the other disabled kids, I was separate from them. Now of course, I realise that's a pretty bad take, and probably because of not fully being aware of my internalised ableism at the time.

    I can also relate to the sense of "having limitations others don't have to face", and subsequently feeling like I need to work twice as hard as non disabled friends and colleagues to be seen as being on the same level. 

    It's a complex thing to discuss, and this blog does a brilliant job I think. 
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    Scope

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  • Sandy_123
    Sandy_123 Scope Member Posts: 43,768 Disability Gamechanger
    I enjoyed reading the article, I think describing the grey area inbetween is a good way to look at it. 
    I give up lately explaining myself to people. Only tonight I had family saying, you could get a job. This is family, who don't have a clue that I would love nothing more then to be out working. Then when you say why you can't, they simply say oh, maybe not then. 
  • BeMe
    BeMe Community member Posts: 6 Listener
    Thank you for this blog it’s really helped me to know that I am not the only person living in the grey area. 

    My CP is mild and invisible to others but its effects feel real enough. 

    I’m grateful that I can work and navigate life without too much difficulty however, it also leaves me feeling guilty or like I need to over explain when wiped out by fatigue and aching limbs or when I don’t join an activity because I struggle with the coordination it requires.  

    It leaves me unsure of what accommodations to ask for at work as the fatigue comes in waves meaning that I can cope with the expected work load at times but at other times I feel like I’m floored doing work & life just desperate for something to give.

    I also wonder how many others with mild CP struggle understanding how it affects their body. My diagnosis was made at a young age and it’s not mentioned now I am older. The only understanding I have of mine is a visibly twisted leg (but again I have learnt over the years to stand in a way that makes that as invisible as possible) tight muscles and noticeable weakness in my left arm and leg, as well as memories of years of physio, occupational and hydro therapy I experienced as a child.

    Thank you again for the blog it’s what I needed to read this evening. 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    What a great read @Richard_Scope i am glad i came across this.
    I think this can be said about a lot of disabilities not just CP.
    I have had problems with my spine/joints for many years, i am one of the lucky one's were i have been able to work, up until the last couple of years. With the mind set, you can't change what you were born with, so just get on with it.
    I always remember  years ago i had to see a consultant at a local hospital.
    When i went into his room he looked at me then looked back at the notes he was reading. His comment he didn't believe i was the same person he was reading about, think he expected me to be going in with walking aids all crippled up.
    I consider my self very lucky that i have reached the age i am and my disability is just starting to affect my posture and the way i walk.
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Thank you @SueHeath :)
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • wendy41
    wendy41 Community member Posts: 224 Pioneering
    Richard, you are the person you are. No shame in that. As for others trying to imply shame it shows them up for who they are. We are not perfect humans no one is. Everyone has an imperfection of some sort in some way. I see how you see yourself in the grey area. I know how people can be so unkind in the way they respond with assumption and negativity. Is entirely your choice who you tell about your CP. Today things are less 'private' but to me anything 'about me' is private unless I want to say and then I choose who and when. Proceed as you wish and don't feel ashamed of your CP. You break the stereotype which opens the way for discussion. 

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