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.

The Problem with (Stock) Photos of Disabled People.

This is the new depressing vortex of ableism I’ve fell into. Stock photos of disabled people.

Except these are not disabled people. They’re non-disabled actors, showing what it must be (must be!) to be one of them poor disabled people we keep hearing about.

I’ll skip the ludicrous “suffering” narrative, and cut straight to the issue of the wheelchairs.

  • That’s not how self powered wheelchair users people actually sit. That’s really uncomfortable. You’ve just plonked your arse in a chair, like you’re waiting for the dentist.
  • The chairs! I don’t know ANYONE who uses those kind of chairs because *drum roll* they are not suitable for permanent use. These are the £200 chairs they lend out at hospitals and supermarkets. Nobody could use these full time. For reference, here’s a (stock) photo of my new wheelchair:
  • And here’s the typical stock photo wheelchair:
  • Just, no. Tragically there must be people who spend all day in one of these kind of chairs, but this is not a safe/comfortable full time chair.
  • I feel for the ad agencies, though. It must be so hard to find real disabled people who are willing to be represented and do an honest day’s work. ESPECIALLY young disabled people. I mean, where are they? I’m sure the ad agencies have tried hard, but hiring a non-disabled actor and buying a cheap wheelchair was obviously a last resort. No other explanation. The media wouldn’t ignore an entire group of people, would they?
  • Here’s some of my “favourites” – I’m *really* disappointed to report that some of these I found on disability focused websites/orgs. If they can’t get it right, where do we start with mainstream media?
  • Got any other ludicrous images of disability that annoy you? Tweet me @krishalpin – I can’t promise my head won’t explode though…
  • The Juggling Act.

    Oh, how I wished this post had a punchline. An answer. Spoiler alert: it doesn’t. I’m still scratching my head.

    My daily problem: having so much business to attend to, finding time to make music feels almost impossible. That’s nothing unusual. My friend and fellow Disabled musician Clare Johnston nailed it in a recent chat: there’s a full time job doing all the stuff *around* the music, before you make any music. Admin, Social Media, Bookkeeping, Funding applications; I’m always busy doing… stuff.

    Being disabled adds another variable to juggle; energy. Being when you’re disabled is hard enough. The effort it takes just to exist is exhausting. And there’s all the stuff. Before I’ve made any music. If I’ve got any energy left to make music…

    But, it is what it is. I’ll remain proactive as long as I can. I know loads of artists and technologist who work for themselves and have to juggle all this stuff. So is there a better way? Must we all be spread so thin?

    I have a few clues which I’ll get into in more detail in future posts. I’m a fan of Getting Things Done, and I use OmniFocus to balance my task lists. I also feel confident that my interest in Mindfulness Practice is buying me more time by keeping my head clearer. I’ll get into how I use these tools soon.

    What about you? Do you have a portfolio career? How do you fit it in? Are you winning? Or are treading water? The future of the portfolio career path in part depends on us being open and honest about what it takes, I believe. That Pinterest-Successful, Hashtag-Career-Goals mindset won’t cut it for long. I hope we can turn the gig economy into a fruitful, inspiring space, but I wonder if the bubble is fit to burst…

    Access, Blogging & Fitting It All In.

    I read a great article recently about five common blogging faux pas. I can happily say that I have never committed four of them, however I was guilty of the last one all the fucking time.

    And that is… Not blogging for ages and then making your next blog post an apology for not blogging for ages. Yawn.

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    (My) Access Barriers To Blogging.

    I hadn’t originally intended to do it but throughout January I blogged every day. That was really just to set up the scene of what’s going on with this project. There was no big ambition to blog every day, however it seems to be proving to be quite interesting to people and it is certainly a healthy thing to do for me. That is, in theory. In practice, I hit an access barrier that wasn’t there the last time I blogged day (which is a good few years ago at least).

    Typing. It fucking kills nowadays.

    Cerebral palsy keeps me guessing. The hard medical line is that CP is a non-progressive condition. I think that’s a little bit misleading. I understand that the neurological damage doesn’t get worse, but the wear and tear that that imposes on the human body through the course of a lifetime simply has to. I can’t move my limbs accurately and comfortably. My joints are my muscles get yanked in around in ways that they were never “designed” to do.

    One of many results; my hands are shakier and less reliable nowadays. That is of course old news in some contexts; the impact on my guitar playing and glove use is well documented. Struggling with fairly menial tasks such as typing is the new thing for me. That makes daily blogging painful and less accessible. Boo hiss indeed.

    But, as is often the way, technology brings hope. Apple’s own Siri voice recognition technology is laughably inept in my opinion, so I didn’t hold out much hope of being able to do speech to text blogging. A recommendation via a colleague at Drake music led me to software called Dragon Dictate. It’s not perfect, but my distrust in voice recognition technology was unfair it seems. Dragon is actually working really well for me, so hopefully that brings me some relief in effect.

    My work at Drake music often means lengthy evaluation processes, which involve a lot of typing. When it comes to medical forms but I have to fill in by hand with a pen… Well, forget about it. Having the freedom to not only work hands-free not only spares me discomfort, but it seems to be quicker too.

    So, I’m hoping to get back on track with regular blogging this week. And in case you’re wondering, yes; this is indeed the first blog post I have written entirely hands-free with this new technology. Living in the future FTW.