I am open about being a disabled person. I am a great advocate for other people with disabilities, and for myself.
Internalised ableism
But I still have some internal ableism, aimed only at myself, but it’s embarrassing to admit to, because I am expected to be fully accepting of who I am. And I am, mostly, and I know I should be with this one last thing, but it has been a struggle, and I feel it’s important to explain.
I might blush!
Picture the scene (maybe with me in a Victorian swimming costume to protect my modesty 😉):
We had just moved into our flat (apartment if you are non-UK based). The bath in our new home, being wider and deeper than our previous baths, looked so inviting, and, as my body was desperate to soak in some bubbly hot water because of all of the moving, I was very eager to have my first bath in it.
I climbed in. I wallowed for an hour or so, reading a book, enjoying a bit of chocolate with my cup of green tea. Bliss. Then I had to get out.
But I couldn’t.
I twisted. I turned. But I couldn’t lift myself out of the bath.
Why?
Because I hadn’t taken into account how much I used the rails that had been installed in our previous bathroom to help me in and out. I had convinced myself that I used them for ease but not necessity.
I eventually managed to get out, after sitting in the cold for a while.
Home changes
A little while later, we had an Occupational Therapist visit. She arranged for rails to be fitted, brilliant!, and she said I would benefit from a blow up chair to help me in the bath.
I remember the feeling in my chest. A firm no. Then, using my positive mindset, I talked myself round, telling myself I would see it as an inflatable on a theme park water ride, and I would raise my arms and go “wheeeeeee!” every time I used it.
It took me 18 months before I felt ready to use it. It’s not that I didn’t need a bath to help my pain; I just couldn’t bring myself to use the chair.
Finally, a bath!
So, we plugged it in to get charged. The machine pumped it up. We filled the bath with water. I climbed on, begrudgingly admitting that it was easier than lowering myself to the floor of the bath. Then the thing wouldn’t deflate! I was basically paddling while sitting on a blow up chair! 🤣
We deflated the chair and I hoped I would be able to get out (I did; I’m not writing this from the bath 😉).
We tried again last night, and the same thing happened, but, this time, we realised we could deflate it manually, then blow it up again when I wanted to get out. I did try to get out by myself first, though. That internal ableism was still there, telling me that I am not disabled “enough” to need this additional support.
And, me being me, I thought more about why I have this.
Not enough
As I have already said, I will proudly advocate for myself and other disabled people, I will passionately express the importance of inclusion and acceptance. And I mean every word I say.
But then I remembered I haven’t always been that way, about myself, at least. I have always been a great advocate for others.
I was born with my main disability but, partly because it’s a very rare disability, and mostly because I was in a family that didn’t really care enough to keep taking me to doctors, to keep searching until I got a diagnosis, I wasn’t diagnosed until a few weeks before I turned 28.
I got involved with the charity that supports people with my first disability almost immediately, and, even though I happily talked about other people with the condition, saying they have a disability, I couldn’t see that I had one, too. That was due to my self-worth then; I had none and felt I wasn’t “enough” for anything, and, though I had spent much of my lifetime to that point in pain, I felt I was a fraud.
As time went on, after so many years with an undiagnosed disability, and a lack of self-care, because I didn’t feel I deserved it, I was diagnosed with more and more conditions. But I still couldn’t accept that I was disabled.
The acceptance came after I started my steps into teaching myself to be more confident. The acceptance came when I realised that I also deserved care, and that my experiences were valid.
A lonely start
Sitting in the bath last night, I was thinking about where my internalised ableism has come from.
Obviously, part of it comes from never feeling I was “enough” , from growing up in a family where my conditions were considered a hindrance.
But part of it comes from not really having any disabled role models when I was a child. The only disabled person I can remember seeing on tv when I was little was Sandy on Crossroads, and, well, his life was nothing like mine; apart from him being a male adult, and me a girl, he was posh and lived in a hotel; I lived on a council estate with my working class family. Disabled people weren’t like me.
I loved books! I went to the library frequently, and borrowed several books every time, but I never read about anyone like me. That meant, to me, that there weren’t people like me, I really was completely alone.
I remember my first, as far as I am aware, encounter with someone who was disabled, not that I knew they were initially. I was around 7 and in the local park with my younger sister (we’ll ignore the fact that it was just me and my younger sister, with no adult supervision). An adult came over and wanted to play with us. I had seen the Stranger Danger stuff, which was scary, but I had also already been assaulted by an adult who had wanted to “play” with me. I was terrified.
I grabbed my sister, ran home, and my dad called the police. When they came, they explained that it was a young man with learning disabilities who saw himself as the same age as us and just wanted friends. I felt horrible and cruel! Although I, as an adult, can understand why I reacted the way I did, me, as a child, was mortified, and I remained embarrassed about it for decades.
Representation matters
Sitting in the bath, trying not to cry about the ridiculousness of me avoiding using a blow up chair, I started thinking about how much of a difference it would have made had I seen other disabled people when I was growing up. I don’t think it would have made much difference to my self-esteem, but seeing someone who looked like me, with my condition, would have helped me feel less lonely; it would have helped me see that I wasn’t the only person like me in the world; I would have seen that I wasn’t “wrong”.
We do see more people with disabilities now, in presenter and acting roles, even in pre-schoolers tv (I really like the couple of episodes of Mixmups I have seen). But we’re still not seeing many in books, and we’re not seeing an equal representation of the population. 24% of people in the UK live with disabilities; are almost a quarter of people on our tvs, in films, in books, disabled? Even taking into account that many disabilities, including mine, unless I am using my stick, are hidden disabilities, do you think 24% of people we see in the media have disabilities?
Making a difference
When I go into schools, I am sometimes asked to talk about living with disabilities, especially hidden disabilities, either in small groups or assemblies. On more than a few occasions, children have asked me questions, and many of those children will say, for the first time, in front of their friends and peers, that they have a disability, too. They tell me after that they feel that they didn’t think their friends will like them anymore when they know that they are “broken”; speaking to someone who chats happily about being disabled gives them hope.
It saddens me that this is still happening. It saddens me that so many children still feel that they aren’t “enough” because of their disability. It saddens me that there still isn’t enough representation so that all children feel seen and valued.
Obviously, I am trying to make a difference with this. I wave the disabled banner proudly; I talk openly about being disabled; I challenge people when they make judgements about what they think disability looks like (Only 8% of people with disabilities use a wheelchair, yet a wheelchair is the accepted symbol; this means many of us have to prove we’re disabled because we’re perceived to be doing it “wrong”. That’s a conversation for another day); and my books are more representative than most.
Helping those like little me now
You may have seen about my current Crowdfunder campaign, where I am raising money to get my latest book published. As with my previous campaigns, there are options to donate to either a school or group of your choice, or to put in “the pot” to donate to organisations that support children living in poverty (1 in 5 children in the UK don’t own a book, mostly due to the cost of living crisis).
Maybe you don’t have children in your life in the age group this book is aimed at, so you can’t see a reason why you should support it. Maybe you can’t imagine how a book would make a difference. So, here I am, as an adult, telling you that, if someone like you had supported a book like this, that represented children like me, that I could borrow from a library, I wouldn’t have been as lonely and isolated.
None of us can go back and change my childhood experiences, but all of us can make a difference to children now.
How amazing is that?!
Here’s the link, if you would like to see the rewards available on the Crowdfunder campaign: https://www.crowdfunder.co.uk/p/find-your-fabulous
#DisabilityRepresentation #InclusiveChildrensBooks #DisabilityBookWeek #DisabledAuthor #Crowdfunder #RepresentationMatters #DisabilityInclusion #DisabilityEquality #AllAbilitiesIncluded #LiteraryEquality