Back when I was a Children’s Church worker, I had to do a training course which was meant to go on to be a video resource for other churches. One of the sessions was about “check your dignity at the door”. The basic premise was that,when you came to do your work with the children, it wasn’t about you feeling good or looking good or being comfortable. It was about what was best for those kids. So if you need to wear funny clothes, or make weird noises or look stupid because you were singing along to an action song, then that’s what you would do. I was confused. It seemed so immediately obvious to me that I thought I had missed the point. (I hadn’t.)
It’s really easy as a nice, normal, average person to make things about you. It happens without you realising. Because the world is made for you, and by you, and you are surrounded by people like you – who think like you, and talk like you, and act like you, and look like you. Who know what you know, and live by that same unspoken code of “this is how it is.”
And then you read the inspiring stories online, about the nice kid who made friends with the kid that was different, or how a team got together to help a kid with some sort of disability score on the field, or some other disabled or different person overcame great odds to achieve the seemingly impossible – graduating from university, or raising money or starting a business.
“Oh, that’s lovely. So inspiring.”
As if the kid who made friends with the one who was different has done something special. And didn’t that kid’s mum do such a good job parenting them (no comment on the bit where she blasts it all over social media.) Or that the cool thing about the disabled kid is that they got to experience a normal kid experience. Or that somehow, now that this person has done these things they are more worthy?
I have read interactions online where disabled people have been talking about their actual lived experience and some random has piped up “oh but you need to stay positive, you shouldn’t let your disability define you.” Don’t be that random. Because a) you don’t know their life experience. You don’t get to decide their identity, just to make yourself more comfortable. And b) it’s the equivalent of telling someone they should “smile more, love, people will like you better.” You don’t get to tell another person how to feel.
It’s easy, when the world is made for you, to think that when someone is different- how they look, how they act, how they think, how they are – it only matters inasmuch as it affects your life. It’s subtle and we don’t always know that we’re doing it. I live on both sides of this ableism- this notion that to be different, to be disabled, is to be lesser, worthy of pity or maybe not worthy of anything at all.
I live in a space where people commend me for my role as my daughter’s carer. That somehow because my parenting experience is different, requires more patience and resourcefulness than is typical, I am somehow an amazing person. I guarantee that if you were in my shoes, you would do the same thing. The only thing extraordinary about it is how absolutely unnecessary the fight for support should be.
I live in a space where I am frequently misunderstood, overlooked and ignored because I am difficult and different. Because I don’t always get conversation right, and I say things out loud that other people only say in their heads (or maybe not even there). I can’t go to the movies, or a pop concert because they flashy lights might provoke a seizure. I don’t drink.
Ableism isn’t just laughing at people in wheelchairs or mocking those with speech impediments – although it is those things too. It’s thinking that the “normal” life is the only life, or the better life.
That befriending the autistic kid is inspirational. (The autistic kid has something to offer too.) That somehow the whole team that made that nice goal possible are heroes. That all these stories of overcoming the odds are the only disabled stories that count.
Every day, disabled people of all kinds, with all sorts of different support needs, go about their days, doing what you do – eating, sleeping, loving, dreaming, working, crying, pooping, laughing. Their (our) stories matter. Their (our) experiences matter. They (we) don’t exist to make you look good, or feel good.
And of you find yourself suddenly on the other side – thrown into a world where you realise that you’re not typical, you don’t think act, move, look like the normal people – it can be really hard to navigate (I still have moments). It can be really hard to admit to yourself that you are different, that things the world assumes are easy are never going to be easy. Know this – your worth is not dependent on your ability to pass as normal.
Your worth is not your productivity.
Your worth is not your body shape.
Your worth is not your conformity.
Your worth is you. Just as you are. You are enough. And so am I. And so is everyone else living on this planet we call home.