Content warning: bullying
Recently, I’ve had the privilege of meeting and getting to know lots of new people who identify as disabled. It’s part of a fun and ongoing story and I promise you will hear much more about it later. The individuals I have met are open and honest, and as well as learning lots about them, I have learned a lot about myself. Some good, some bad, and some just plain fact. I’m one of those people who can chew information round and round in my head, and it only really makes sense when I say it out loud and bounce it off somebody else, especially if they are in a position to understand and to empathise. This is one of the reasons I appreciate my #spoonie twitter support system so much, especially those who are often up till the wee small hours with me. On to the main story…
Growing up different was tough. I say that with no doubt in my mind, though when I look back I didn’t really have any issues with other people till I started secondary school. Up till then I’d been outgoing and gregarious, even in the face of childish name calling. In primary school I had been popular, never short of friends. I excelled at my work and starred in school plays. I was a model student and I really enjoyed life. As I said earlier, I often only appreciate certain facts when they are bounced off against others, and it was upon entering senior school that the other students really gave me a taste of ‘who I was’ according to them.
Along with having few social graces (people had always just accepted me for who I was, a treasure of being young) I had a lot of health problems. What I did not know then, but do now, it that my EDS (Ehlers Danlos Syndrome) was behind many of them. I walked funny and had pain all through my legs and hips. I would have shoulder problems too, with intense pain through my neck and spine, not helped by carrying a backpack full of heavy books. My biggest issue, at least as far as others were concerned, was my face. As I aged, my lower jaw grew further and further out until my teeth did not meet at any point. I could not eat food without breaking it into tiny pieces, and my mouth was a mass of metal throughout high school. I also struggled to breath through my nose and so my mouth would loll open even more, especially on those days I struggled to breath due to severe asthma and recurrent infections. I had to have ongoing oral and maxillofacial (jaw and face) treatments and surgeries, culminating in a final corrective surgery when I was 18. There is a reason I have no photos to post here, as the first ever photo that was taken of me with me permission was at age 25. This article here gives an idea of what I went through, though my condition was far more severe and my top jaw also had to be operated on in the final surgery. (I’ll talk a little more about my surgery at a later date.)
The journey was tough. My previously high self esteem was chipped away at through constant name calling and bullying. Boys would parady being scared and running away when they looked at my face. Not knowing any differently, and not having my differences explained to me meant that the bullying really took its toll. I did well at school, always in top sets with top marks, but I dreaded going in. Add to this the physical problems I dealt with, which would lead to me coming home and falling asleep before I could even change out of my school uniform. I realised too late a) that I was different and b) that being different was not a good thing. I was a teenager in the 90’s before the internet was really a thing, and before you could gain support on things like social media, a support system I treasure today.
So why as a now pretty confident and self-aware young woman am I telling you all of this? Why does it matter now? It matters because bullying cost me dearly. It tore my self esteem down to nothing at a time when I desperately needed understanding and support. It’s only now, as an adult that I see what happened to me for what it was, blatant ableism. So many adults witnessed what happened to me, and witnessed what it did to me, and yet they did nothing. I was not offered support, and the people who would confidently sit in lessons shouting foul things at me, throwing things at me, were never admonished. And I ask myself, what would I do if I saw someone, particularly a vulnerable young person going through what I went through?
The answer is, everything I possibly could to make that person’s life better. Everything I could to educate the narrow minded bullies who use the words ‘spaz’ and ‘retard’ and ‘mouth breather’ as if they are not words of hate. As if they belong in the vocabulary of anyone who feels able to look at themselves in the mirror at the end of the day.
For me, this is a story whose surface is barely scraped, but my word count is juicy and I’ll leave it there for now. I’ve said it before and I’ll say it again, it still appears that ableism (discrimination against people with disabilities) is the last acceptable form of discrimination, and that it NOT okay. Not on my watch.
If you’d like to know any more about me or my journey, please do let me know in the comments.