Since I started writing about having a disability, I knew I was already entering an area that was highly stigmatized. Comments on my articles saying I could be scamming the system, or that I don't seem disabled enough to be on disability benefits, have been firing around me since I began the dialogue.
And I understand. Readers don't know everything about my life, nor would it be possible to get every detail into a 1,000-word article. Not everyone is going to agree with what I say, and I have to learn to be OK with that. But as a writer and an activist who works to change stigma in society, I can only speak from what I know. And I know that as someone with a disability, we're constantly stigmatized from the time we go to work, school, the doctor's office, the welfare office, or even the coffee shop.
By the time we're finally brave enough to write about our experiences — and very few of us do — we already feel the stigma, carry the shame, and hold the guilt, and we are trying to push through all of it to educate people. And when we finish the article after dealing with our disability and day-to-day challenges and have the courage to hit send, then we see the comments.
Maybe we shouldn't be surprised, and maybe we shouldn't waste our time reading them, but unfortunately we do. And while a lot of comments are encouraging and supportive, a lot of them mirror exactly what we try not to tell ourselves every day: That we're seen as less-than in society, that we should be suffering, and that we're lazy compared to people who make a living.
I've fought like hell to be seen first as an abuse survivor, then as a person with a mental illness, then as an emerging writer and finally as a person with a disability. My parents told me I was demanding, ex-friends told me I wasn't trying hard enough, doctors told me I didn't look disabled enough and welfare workers told me I didn't have the right paperwork. Now readers say that my experiences aren't true and that I must be lying or cheating, or worse, entitled. These days I'm fighting to be seen not as another stereotype, but as a real person.
A lot of people think that writers should just let the comments go and that readers are welcome to have free speech. And while over the years I've learned that I don't need to defend myself, I won't stand for silently perpetuating the stigma around those with disabilities. We're already made to be silent enough through poor rights at work, invisibility in the media, and loopholes in welfare paperwork. By responding to the comments on my articles, I hope to help stop the stigma people with disabilities will continue to face because of them. Here are some of those myths, debunked:
You don't seem that disabled! You must be cheating the system.
It's excruciatingly difficult to get on disability benefits, especially because having a disability makes it harder to take the necessary steps to apply. In order to be approved, I had to get diagnosed, convince doctors to sign the forms, put together a case, and appeal when I was rejected.
I can't speak for those who cheat the system, but there are a lot of people with disabilities who haven't even been able to prove that they have them. I've been lucky in that I found resources to help me, have good organizational skills, and am skilled at writing letters.
You're just too lazy to get a real job.
My dream is to run a successful magazine that financially supports me and those working for it. After six years of trying to get FLURT off the ground, all while trying to keep a job, applying for welfare, getting diagnosed, concentrating on my health, and applying for disability, I've managed to keep it running through hard work and delegating to volunteers. But I want it to be able to grow so I can pay myself and those who support me, and most days I'm just trying to take care of myself and do the bare minimum to keep it running. Imagine what I could do if I didn't have my disability holding me back.
How are you well enough to __ but not work?
A person's disability doesn't affect every aspect of their life even though it affects many of them. For example, I have dyspraxia, which is a neurological disorder that affects areas such as memory, muscle tone, and movement. It affects my ability to make a living in a regular way, but it doesn't affect my ability to write freelance or run a magazine, as I'm able to work around my disability from home. There aren't set times I need to work or set breaks I have to take, and I can work from my bed if I have too much fatigue.
You shouldn't get to enjoy X, Y, and Z.
If you get to go to work and buy yourself shoes without holes, treat yourself to a pizza, and save up to travel a couple days out of the year, why am I not allowed to do those same things? Trust me, people living on disability benefits aren't living in luxury.
Depending on where you live, how much disability benefits are in your city and if you're working (people on disability are allowed to work, their disability just prevents them from being able to support themselves), you can sometimes afford more than the bare minimum.
You make it sound like disability benefits are a dream.
They are when you have a disability. Compared to the last six years, it's a dream that every day I have a safe, quiet place to live, food to fill my stomach, and money to pay my bills. I can't afford a lot, but I've learned to be happy with less. I don't need to make it sound like I'm suffering because people think those on disability benefits should be. I've suffered enough. Living with a disability sucks, so let me enjoy what I have.
Your writing about disability makes you sound entitled.
If being entitled means believing that I should have the right to financial stability just like everyone else, sure. I've fought for years to try to support myself in countless jobs, believing that only if I worked harder I wouldn't get fired. I spent time and money to find out what my diagnosis was and to get medical professionals to sign my disability benefit forms. A lot of the time I felt like giving up because no one believed me. The idea where I have to prove whether or not I should be on benefits died when the government finally granted it to me.
I know that despite this article, the negative comments about how I'm scamming the system or that I don't seem disabled enough to be on disability benefits won't suddenly go away. People will always disagree with my lifestyle — one that I didn't choose — and my refusal to be silent about it. But it's not just about me reading the comments. It's about everyone else who doesn't have a disability and the possibility that they'll believe them.
There might always be stigma around people with disabilities, but if you share this article, maybe there will be a little less. We aren't people you should feel sorry for or judge; we're people who are trying to live a life full of purpose, just like you.