World CP Day: What CP Is Like For Me.

This piece contains frank discussion of ableism and ableist language, and is intended for older audiences.

The Tic Tac No, as it’s known, is something I designed in my art college days to represent a particularly insidious problem. Put simply, there are things in life that we accept as right, even though we kinda know they’re wrong. The right answer could be in plain sight, but we see the wrong answer as the truth. Right now, I can’t see the Tic Tac No without thinking of the fall out from Kavanaugh. It’s message is clear, it’s application is fluid. I created it (and had it tattooed) to remind me to always look for the truth. As it’s World CP Day, I wanted to share some of the wrongs I’ve faced, because of my condition, that I accepted as right. That I put up with. That I accepted as truth, when the truth was in clear view. And in case you’re wondering, this Tic Tac No is green to acknowledge the official colour of World CP Day. And I scribbled it out on my iPad about 5 minutes ago.

I have symptoms of both Dyskinetic and Hemiplegic Cerebral Palsy, meaning I have both involuntarily tight & weak muscles (dyskinetic) primarily on my right side (Hemiplegic). I had a brain injury during birth, caused by lack of oxygen. I “died” for a few minutes, and came back wonkier than I would have been. It’s manifests kind of like a stroke might. No, my kids couldn’t have caught it off me.

There are two realities to having CP for me. There’s the one you know; the one you can see. So first let me tell you about what that reality is for me.

My having CP is a very visible thing for me, and that brings a lot of baggage. The wobbly walk, the bent knees, the spazzy arm (it’s OUR word!) – those were the things I worried about as a kid, and the things that made me deeply self conscious as a young adult. But those things bother me less and less nowadays.

I used to wear the baggiest trousers I could find, to try to hide my legs. Nowadays, I’ll happily rock skinny jeans. I’m totally okay with how it looks. There’s something a bit Punk Rock about making my impairment super visible. I get to reclaim it. I feel just cheeky enough, just confrontational enough to draw your attention to it.

I’m literally a different person now though. This version of me can handle that. Me 10 years ago, he’d be scared of this guy’s world. I’ve put up with so much shit for the way I walk, it seems unthinkable to me now. I’ve been shouted at, laughed at, spat at, threatened with violence – there are people in this world who seemingly hate disabled people. I don’t know. It brings out something ugly, in ugly people. I lived in fear for most of my early twenties. Seeing a group of men together in the street (it’s usually men) I’d freeze. I knew what was coming. “OYYY SPACKKAA!! ARRRGGHHH LOOK AT HIM!” People are weird. And cruel. I’m not a big fan of people.

I’ve no doubt that my recently acquired confidence is a factor in diffusing all that; it rarely happens nowadays. Cruel people are like angry dogs. They smell fear, and they act on it. If it happened tomorrow, I think I’d laugh. It seems so weak, so pathetic. Imagine being trapped in a brain that’s so basic, so bitter, so lacking in empathy. Ewww. Despite that, it’s worth saying: my fear was not the cause of this. To suggest otherwise is victim blaming. If people treat you that way, it is not your fault. Read that again. It is not your fault.

How I feel about how I look nowadays, well if that was all there was to my CP, that would be okay. Totally able to handle that. But that second reality – the one that matters to me – is about how I feel, and most of the time, I feel like shit. My body aches, my muscles burn and twitch, and I take a cocktail of painkillers and muscle relaxants to deal with it.

Living with pain and fatigue is tough. It’s made harder because nobody can see what you’re going through. I can’t walk to X. That’s totally understandable. I’m too tired to do Y. You should have gone to bed earlier. Society struggles with what it can’t see. People have a hard time trusting you on that. School and college were brutal in that regard. Being raised in a very British put-up-and-shut-up fashion, I rarely spoke up. I was pushed and pushed, and if I struggled, I was lazy. I was playing on it. I’ll never forgot one of the rare times I spoke up at college. My lecturer told me that I was only disabled when it suited me. The idea that my condition had aspects to it – invisible aspects – that affected some areas of my life some of the time, was untrustworthy. If that sounds familiar, let me say again: it’s not your fault.

So there’s one word I’d like people to reflect on for World CP day: Empathy. CP is a weird and cruel condition, and the worst of it isn’t even visible. I read countless horror stories on social media of young people with mild forms of CP who are bullied by society, by the adults they trust, to push themselves to do more with less. I worry a lot about teenagers and young adults with “mild” CP (as mine is laughably described) – society is unwelcoming to that. We can accept (and applaud) people at the peak of fitness. We can accept (and feel sad for) people with severe conditions, unable to move or care for themselves. But in that wide spectrum is where a lot of young disabled people land.

These young people have a lot to do to make sense of themselves, their ambitions, their health, and they’re doing that in a society that doesn’t make room for them. We see society accommodating wheelchair users often, how often does society acknowledge a mobility impaired person who isn’t elderly? What are we doing to accommodate people who’s needs are less complex, but no less important? Only last week, I read news of a young woman with CP, ejected from a nightclub because she was assumed to be drunk. It’s a savage impairment at times, but society’s handling of it can be even more savage. The world may be very mean to you if you’re like me. Once more; it’s not your fault.

Empathy is not the same as sympathy, of course. I don’t need or want sympathy, nor does any other person dealing with CP and trying to fit into some version of a normal life. We just want to be accepted, heard and respected. I’m okay with all that CP has brought to my life. And if any of what I’ve said reflects your life with CP, I hope that, if you’re not already, you’ll soon be okay with you too.

5 responses to “World CP Day: What CP Is Like For Me.”

  1. Thank you for writing this, as the mother of a daughter with mild left sided hemiplegia, it is horrendous to know how cruel the world can be and how many lack the basic empathy we should all have for all people. The invisible side of CP is far more difficult to deal with purely for the reason that people do not believe there are any issues, and yet in many cases those invisible struggles are harder to deal with than the more obvious physical ones. It is important for articles such as yours to be seen and perhaps then more people will realize that those with CP have much more to deal with than the obvious and more should be done. There seems to be a total lack of understanding by many, a good case in point is the young lady ejected from the night club because assumptions were made she was intoxicated -I sincerely hope this will change in the future. Thanks again for a timely and superb piece of writing.

    • Linda, thank you so much for sharing that. It’s hard to write this stuff, but hearing from people like yourself reminds me that it’s worth it. My work means I meet a lot of younger people with similar stories to mine; while I don’t like to think of being a role model, I can’t help but think what it would have meant to me growing up to see someone relatable doing well. I have an extraordinary life, and I’m grateful every day – it can get better! Thank you again for your story and kind words 🙂

      • Kris, I think that many people shy away from wearing the mantle of role model, but I think some people just have that way about them and though never think of themselves in that way, are able to convey thoughts and ideas that inspire others. I think you are one of those people. I myself have been inspired by your music which I have listened to online, by your playing of instruments, which I would like to do but struggle with. I think voices like yours need to be heard, and people need to see how you have not allowed your challenges to define you, but instead have found work arounds and have met people who can help in your passion for music, so you can follow your dreams and aspirations. I think that is something young and old need to be reminded of, because we all forget sometimes. I look forward to enjoying more of your posts, and more of your music, you are super talented, and that song you shared is beautiful. I thank you.

  2. Thank you for your candidness and strength to share. I’m a mother of a 5 y/o with mild RH we’re in mainstream… I say ‘we’re’ because seemingly I’m there teaching them empathy! That said we are now winning 🥇 and it’s “clicked” but I feel a constant fight… Outside my child’s ear. I’ll take his fight any day of the week but soon he’ll not want me and be navigating himself by himself… I just pray that empathy meets him. Keep blogging please your words are powerful and most importantly really helpful! Thank you again. E

    • Emer – thank you so much! I went to mainstream and it’s definitely a challenge, sadly it sounds like it still is, decades later. Teachers were toughest though, I look back in horror at the attitudes I faced. Sounds like you’re winning though – making all this noise will I hope bring out more empathy… thanks again for the kind words! – Kris

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