Do You See Me?

Do you see difference?  I hope you do.  One of the more pervasive politically correct phrases is to say that we don’t.  When people say that they don’t see race, gender, sexuality, disability, what they want to put across is that those things don’t affect how they deal with an individual.  Now this is a noble ideal, but I find myself less and less comfortable with it being expressed this way, because there’s such an erasure when we say that.  For the first few months of this year, I was doing mental health peer support work locally.  One of my clients was Afro-Caribbean, I can think of few worse things to say to him  than “I don’t see race” – because that would completely disregard the fact that our mental health journeys, whilst having some striking parallels, had very different turns in them because of our differing skin pigmentation and all the societal reactions to that.  Of course that is not the sole factor, but to disregard it, to leave it off limits by claiming that I didn’t see race would be a matter of disempowerment and of crassness.

So I hope the next time you’re tempted to claim not to see race, this anecdote gives you some pause.  In the same way, I hope that if we meet, you see disability.  And yet I also hope that you don’t.  As ever it is much more difficult to live by rules, standards and ideals when you’re directly affected.

I’ve written before On Anger and some of the reasons why I find it an intensely difficult thing to deal with.  For the most of the summer I was in a magnificent headspace, anger didn’t make many appearances – but I notice that on a few occasions it left me on an incredibly short fuse.  And unsurprisingly, CP and my body were at the heart of it.  My rage that I couldn’t be as mobile as I would like, that I had to sit out certain activities that I really wanted to do, rage on the unfair nature of that, on the fact that I couldn’t move for physical pain – I sat with it and let it stew until occasionally it would be extremely close to boiling over.  There came a point where I felt so let down and so trapped by my body, I just sat down on the nearest bench, in pouring Scottish rain and despaired.  Feeling like you’re merely carrying your body around with you is a lonely business – and when you know the reasons are permanent – it’s a painful truth to have to hold for yourself.

I have a complex relationship with my disability, but one of the things that has really helped me, is being honest about it.  It’s a major part of why this blog exists, I am not prepared to sit alone with it as often as before.  I find real solace and support from being able to share, from being seen.  I value people having the courage to say that they see my disability – that is not the same as treating me differently, but acknowledging that experience is incredibly validating and helpful.  I am disabled.  I am a disabled person and a person with a disability, and there is no shame in that.  I like my disability to be seen.  And yet I recognise that the times when I got angry, were often times when I did feel a shame or an inability to share in my feelings.  Why should this still be the case?

Partly, it’s because I’m sure that you can’t untangle all of these emotional knots in mere months.  But there’s a darker part here.  I don’t want to be an outlier.  I want to be ‘normal’.  And before anyone hands me platitudinous bullshit about there being no such thing as normal – I get it!  I know that, but part of me would really like to not have to deal with this disability nonsense.  I want to be able to run.  I want to be able to sit in a chair without having to constantly readjust because of my back.  I want to be able to get dressed without having to sit down and needing extra space.  The central question of disability is still there for me.  I know that eventually I’ll reach a place where I can feel comfortable with it most of the time, but there’s still part of me that just wants to be normal.  That wants my disability unseen.  That wants to have disability as the 283rd thing that people recognise about me.

So much of my anger comes from wanting my disability really seen.  Not the version that everyone thinks it is, not the pure empowerment, inspiration pornography that society wants, but the messy, tangled, knotted, goodbad confusion that it is.  The anger comes because I also want my disability unseen.  I want to be able to do all of the things that my peers can do, I want to be expected to be able to do those things and then go out and meet those expectations.  I don’t want people to have to adapt plans for me, to slow down for me, to give my legs a second thought – however helpful and supportive friends might be – there are times when even the most accommodating gesture can feel like a slap in the face.  Because I resent that we have to go about things differently.  I want to go back to not having a strong disability identity.  I want it unseen too.

So I hope you see my disability.  And sometimes I hope you don’t see it.  I want to be able to shed ‘disabled’ as an adjective to describe myself.  And yet I know that only by embracing it healthily can I move forward.  If you meet me and I’m angry, it’s not so much pure rage about a body that doesn’t do what I want…

It’s because those two parts of me – the part that wants it seen, and the part that wants it unseen, are both ramped up to 11…and that mental pressure cooker will then boil over.

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4 thoughts on “Do You See Me?

  1. Chris, i really appreciate your description of your feelings. How you can be on opposite sides. Thanks for this beautiful written piece! I am a relative of Emily’s. So I have seen the posts of yours that she has shared on Facebook. You are very good at putting your feeling into words!

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  2. Chris, wow do I relate to this so much! You point about wanting ” the messy, tangled, knotted, goodbad confusion that [your CP] is.” to be seen by the world is something I think about a lot as someone who also has CP. I think a lot of my anger comes from the world not being built for people who use wheelchairs/walkers/canes to get around. Most of my frustration about my CP comes from not being able to do the things everyone else is doing because of my mobility aid. And yeah, friends “get” it but they never truly will since they are not living in a disabled body 24/7. Like you I’ve also recently been dealing with the struggle of wanting my disability to be seen and unseen. I just had a friend’s mom say “oh wow I just never think of you in a chair because you’re so…normal.” It stung at the time more than comments like that used to and I didn’t fully understand why until right now reading this. So thanks for helping me sort through some of my complicated feelings on the matter! (:

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    1. Oh Sara, I’m sorry to hear that comment, that’s brutal and they really sting when they come with good intent! I’m glad the piece helped, do stay in touch!

      C.

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