Don’t tell me to smile

Part of the idea of disability porn – aka inspiration porn – is the concept for ABS: Always Be Smiling. That the person with a disability is not only there to inspire you with the way they’re living their life – they’re also going to be really happy about it

I’m sorry, but I’m here to disabuse you of several notions.

First of all,  just in case you don’t know what disability or inspiration porn is, here’s the person who is known for coining it: Stella Young. ‘I’m not your inspiration, thank you very much.’

Basically, disability porn is the idea that disabled people exist to inspire abled people.

Whenever I talk to other people with chronic illness or disability, I ask how they feel about this. The answer is resounding disgust and anger. We do not exist, continue, live full lives to inspire abled people. It’s important to note that we often feel different if the person who is inspired by us is a fellow person with disability or illness. For me, if someone else with arthritis finds anything I do useful, that’s fantastic. But I do not do it for healthy people to say things like “Oh well, if she can live life [with her illness] then so can I. Look at her! How amazing that she does xyz even though her life is so difficult.”

Newsflash. That doesn’t make me feel good at all.

There’s a couple of realities here. First of all, this sort of behaviour forces me to be grateful for these people’s perceived support or kindness, and if I’m not, I’m rude. No. Fuck that. They’re rude for using my life to try and feel better about their own.

Second, it forces me to ABS: Always Be Smiling. It ignores the fact that, get this: I don’t want to. Yes, I am achieving things. Yes, I have much to be grateful for, and you can bet your ass I spend a lot of time thinking about that.

This is inspiration porn

It doesn’t escape my notice that this has some parallels with the expectation that I will ABS and be grateful for being on a benefit. And again, I am. I count myself incredibly fucking lucky that I live in a country that has social welfare, even if the system is really damn broken and the money is barely enough to get by. Yes, I am lucky to have it. I know that.

But I also have a lot to be pissed off about. My illness happened to me because of a freak accident combined with a shitty turn in the genetic lottery. Before that, I was healthy. I was doing a job I loved, living a life I loved. I was independent. I didn’t need to rely on kindness or a government system that is unpredictable and anxiety-inducing at best. I respected myself and my life.

Then, five years ago, everything changed. (For those of you who already know my story, I’m sorry. I’ll give the canned version). I went to Bali. I got a stomach bug, like many people going to Bali do. I came home and never got better. After being treated with a series of antibiotics that wrecked my stomach flora and caused widespread inflammation that ran rampant throughout my body, I was hospitalised. After I was released, I was anxious to get back to work. I held on even when I was in bed, working with a laptop in one hand and a bucket in the other. It turns out, sheer determination can’t actually save you from genetic autoimmune arthritis, which I developed because the inflammation triggered the gene. Now I have it for the rest of my life.

Let that sink in for a minute. I want you to know; you may not have my genes, but you too are one illness away from losing everything. That’s the reality we live in. No one is safe from that. So if you think that disability is never something you’ll face, that welfare is never something you’ll need? Well, I hope for your sake you’re right.

Because here’s another truth: This Fucking Sucks. And I am sorry, but I am bitter. And I am allowed to be.

I don’t have to smile all the time. I don’t have to be positive all the time, though I do my best to be, because that’s what serves me best. I don’t help myself by feeling shit about circumstances I can’t change. But I also don’t help myself by beating myself up over feeling negative sometimes. It’s ok to feel negative. What’s happened to me is the fucking pits. Anyone would feel shit about it. And I certainly never tried to make out I was Mother Teresa.

So, I guess, this is really a message for my fellow sufferers of chronic illness or disability. You probably know this, but in case you need someone to say it to you today: Hey. It’s ok to be bitter. It’s ok to not want to smile, to feel sad, to experience depression and anxiety as a result of the life you have to lead. No one should expect you to ABS, especially able or healthy people who have no idea about your reality. You don’t exist to inspire them. You exist to inspire yourself.

And for me, to myself? It’s inspiring that I’m still even fucking here at all.

That’s something to smile about.