Today Disability History Month will officially start in the UK. Events began last Monday here at UEA and during the week I've been reflecting on what it means to be disabled. There have been a number of opportunities this week for me to discuss disability with my disabled and non-disabled friends and it made me realise that, even within the disabled community I have been lucky enough to become part of, we often don't talk about what it means to be disabled or many of our experiences. This is because many of this is deeply personal, however the only way to break the stigma that surrounds disability is to talk about it. I don't want anyone to feel like they have to, but personally I feel comfortable enough to do so. So here is my post on my disabled life:
Disability. It's seen as taboo by many. Even for me while I was growing up. I grew up with the most amazing parents. They were very open, acknowledged what I would never be able to do and then focussed on what I could. I'm one of the lucky one's - I spent my childhood being encouraged to take an academic interest in things and being informed constantly that "independence is the aim of the game". But it was still tough.
When I was around 9 we had an assembly at school on the local hospice. I had been going to a different hospice for a couple of years not understanding much more than that it was this amazing fun place. During the assembly a teacher made a comment that hospices were a place people could go when they were dying. That was how I found out I was dying. That the SMA inside of me was slowly killing me.
I have SMA - or Spinal Muscular Atrophy Type II to be exact. The slightly more severe form of this is the number 1 genetic killer of children under 3. It's caused by a problem with the same gene that causes MND and is very similar. I was diagnosed when I was 18 months old, have never walked, had spinal surgery at the age of 9/10 and will continue to grow weaker until I can't breath or swallow and die. I remember my Mum getting up in church and saying how great it was that I had made it to be 12 because they weren't sure I would and that's when I realised how lucky I was.
I'm lucky I survived - that I had the strength to fight my condition. I'm lucky I had a family who encouraged me to enjoy life. I'm lucky I met Charlotte Lowry at the age of 8 and got to go to her birthday party - the first freaking time I'd been in the house of someone who wasn't family.
Disability sucks. It's as frightening and lonely as it's often seen to be. I've had to fight an ableist society my whole life and so have my parents. They had to fight for me to be able to go to a mainstream school, they had to put up with the ass-hats that had the cheek to say to them that I was disabled because they didn't pray hard enough and they had to fund raise for every wheelchair I ever had until a year ago because until then the NHS wouldn't provide what I needed.
Disability sucks because the whole world is against you. People would rather have an aesthetically pleasing building than one I can get in. I can't even go upstairs at my own university! Sometimes you just want to give up.
But then there's that moment of clarity. Most of the time (like 98%) disability sucks, but every now and then it's the most amazing thing in the world. There's a moment where you're sat in a room with a bunch of the most brilliant people ever and you know that you would never have met them if you hadn't had your disability. There's a moment where you realise just how strong you've become, all because of your disability. There's a moment where things don't suck, and it makes the horrendous struggles you've been through completely worth.
This week someone asked me if I could, would I go back and live my life without my disability. And the answer is, unsurprisingly, no. My disability is part of who I am, it's an essential part of what makes me me and I wouldn't change it for the world. I'm proud of who I am, disability included. Now all I want to do is make sure people like me experience their disabilities and that it won't suck. That they won't have to fight to be educated and enjoy life like I did. Because disability is beautiful, and people should know that.
All I want is for a disabled kid like me not to have to wait until they're 8 for someone to care enough to sort out a ramp and invite them over. Kids like me shouldn't feel like the only place they can be open and honest about their disability is somewhere like Francis House (the hospice I go to). Disability should be something we celebrate and that's why I support Disability History Month.
For the longest time I felt like I had to hide my disability. The only place I didn't feel like I was going to be judged for my disability was Francis House, everywhere else I felt embarrassed by it. I refused to go to any group that was specifically for disabled people until I came to university because I didn't want to be seen as disabled. But then I came to university and met people at Chronic and I felt proud! This was a group of people who were strong together and it made me stronger too. I finally managed to come to terms with everything my disability encompassed. I'm proud of who I am, just like every disabled person deserves to feel.
I always encourage people to ask about my disability, so if you have any questions please ask me. I won't be offended and will be very honest in my answers.
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