Internalised Ableism, Shame and Dyspraxia

It’s been over a month since I “successfully defended my thesis at viva” but if that’s news to you, you’re not alone.

I’ve been too ashamed to tell many people.

Why would you be ashamed, Bee? That’s a great achievement!

Thank you. I know I’d say the same to anyone else, too, and I know I’ve worked long and hard for it. I thought I’d be shouting it from the rooftops and celebrating my accomplishment.

But every time I’ve gone to do so, I’ve felt paralysed. Frozen in the fire of shame.

I’ve written Tweets and Facebook posts. A draft email to work colleagues who helped promote my study. Draft emails to previous supervisors and to my previous boss, who had so much faith that I could do it.

But they’ve not made it past a draft.

How come? What’s driving that shame?

Well, I guess there’s two sides to it. The surface ‘trigger’ is how long it has taken me to get here – a little over 5 years when 3-4 years is more typical for my course. The other is more deep-rooted; a lifetime of feeling slow and not that bright and a fraud. Those things I’ve carried for years which I feel are ‘proved’ by my slowness in this, by how many times I nearly gave up. Those things reflect my internalised ableist standards and tell me I ‘should’ achieve the same things, in the same ways and at the same pace, as my neurotypical peers.

Internalised ableism?

Exactly. Society is full of messages about what we should achieve and when, how long things should take, what hard work looks like, etc. Being dyspraxic doesn’t exempt me from hearing all those messages and taking them on board, especially since I didn’t even know I was dyspraxic until a few years ago.

For example (and I can only speak about the UK here) the education systems sets up a message that we should be able to sit through multiple hour-long lessons each day, to socialise between lessons, to join in extra-curricular activities, to do homework, and learn at the same pace as everyone else. It sets up a message that it’s ok to be tired at the end of term but you should feel refreshed at the beginning. A message that you should be able to order your thoughts quickly for exams and sustain attention, thinking and writing speed for often 2-3 hours in the exam room. A message that not being able to meet these standards means you’re not trying hard enough, or you’re not good enough in some way.

Long before I knew I was dyspraxic, I’d learned to hide it wherever I could. I’d learned not to complain of the crushing headaches and nausea I now know were caused by sensory processing difficulties. I learned to push through and keep working no matter how tired I was, because that way people would say I worked hard where otherwise they’d say I was lazy. I was quiet and didn’t join in group conversations because I felt I couldn’t think fast enough to keep up and worried I’d say something stupid in my rush to say *something*.

And so long as I could hide these struggles, I got praised. I was the girl who worked hard, the girl who listened attentively, the conscientious one.

But when I couldn’t hide them? When I was so tired that eating was hard work, or so discombobulated that walking to the bus stop with my friends took all my concentration? When I was being clumsy or disorganised or my clothes were scruffy?

Well, then I was seen as lazy, not trying hard enough, too quiet.

So I learned that I ‘needed’ to work harder, to hide my struggles, to meet the standards and expectations of everyone around me. I knew I was different, and when that showed I got criticised, so I tucked those parts of myself away, as hidden as possible from others. And when I couldn’t hide them – like in PE – I’d pass it off as a joke, or pretend I hadn’t really tried as hard as I could, or just hope and pray that no-one mentioned it.

And for a long time, that kind of worked. I could get by. I dragged myself through my undergraduate degree. When I’d start a new job, often it was a bit rocky at first, but that usually settled.

My friends learned some of my quirks, but they were seen as just that; quirks. Not needs, not differences in how I experience the world or my body. Just quirks. I felt I had to hide my ‘defects’ by downplaying them. A bit of a picky eater, just a bit quiet, humorously clumsy. Don’t let on that you’re struggling to know when it’s safe to cross the road, that you feel you’ll trip when you try to keep up with everyone else’s brisk walking pace, that you’re overloaded and feeling ill from it. Pretend you’re just like everybody else.

It’s fair to say I spent much of my life in hiding.

What changed?

Well, I started my doctorate. I nearly didn’t even start – I knew enough about myself to anticipate I might just be too tired to keep up the pace and stay on top of the workload. But because I didn’t know I was dyspraxic, I told myself everyone else felt tired and just had to suck it up and get on with it, so if I really wanted this qualification I would just have to do the same.

And then I started the course. I continued trying to hide my challenges, but I was consistently challenged in ways I’d never been before. The long commute to uni, the long uni days, being on a different placement each day of the week, juggling finding placements with attendance and with coursework and extra reading for my clinical work.

Physically exhausted from long days, so much travel time and ever-changing sensory environments, and mentally exhausted from so much learning and the executive functioning skills required to stay organised and on top of things, I was forced to acknowledge that I could not continue this way.

Getting diagnosed was a relief, albeit mixed with a little shame at seeing my struggles starkly on paper. Without that diagnosis, I’m not sure I’d have been able to find the self-compassion to pace myself, to allow myself to rest and work at my own pace. I certainly wouldn’t have accessed lots of the support and learned some of the skills I needed to make the work a bit less hideously gruelling. In a lot of ways, that’s what I’m proud of from the last few years – giving myself permission to slow down, to take the time I need to take.

But that all means it’s taken a lot longer to submit my thesis. And while I’m proud of starting to live a life that more authentically reflects who I am and what I need, I still have some work to do in shaking off those standards about how much I should be able to do and how quickly I should be able to do it.

Because somehow, announcing I that I got through my viva doesn’t feel like announcing a success. It feels – irrationally – like announcing my slowness. It feels – again, irrationally – like letting down the people who believed in me without knowing the dyspraxic parts of me. I’m still wrestling with that shame which comes from not meeting the typically expected standards, timelines and ways of doing things that so many of my peers were able to meet.

Rationally, I know that I’ve worked hard and achieved so much. Rationally, I know a lot of people would laugh at the idea of being ashamed about passing a viva, just because it took a bit longer. And I know that I’ve benefitted from a lot of privilege that’s even allowed me to study for a doctorate, get diagnosed and access support; I know many people wouldn’t have this opportunity that I’ve taken so long over. So I’m also ashamed about being ashamed!

I’m working on being more accepting and compassionate with myself, and being more open about my experiences. My instinct is to keep hiding, but I know hiding only perpetuates the shame. I hope this post will be part of changing that cycle.

Thank you for reading.