With A New President, I Hope We Talk More About Disability
After this last week's presidential election, I've found myself thinking about disability and how I hope the new president-elect Biden and Vice President Kamala Harris will usher in a new wave of conversation around it. There's a feeling of hope in the air, of a new future — and I hope that people with disabilities will be acknowledged and fought for.
I know that many people want real, deep, necessary change around racism, sexism, classism, and ableism— and that a new president-elect isn't going to magically make change appear overnight; this is something we all have to want and work for. Our country has had long-standing issues and January 20 does not automatically mean healing. It means the work begins.
It's a small victory worth celebrating
But that doesn't mean we cannot celebrate the small victories along the way — like Biden and Harris mentioning disability in their victory speeches. This is a big deal. For what it is worth, I want to say that it is totally okay to be excited and hopeful when people in positions of influence and power acknowledge the disability community and promise to tend to it. Why shouldn't we be excited to be seen? This doesn't negate the fact that there is work to be done. It helps fuel it.
Because the fact is, it is so easy to feel and to be made to be invisible in an inherently ableist society. The truth is the systems in place to support disabled folks (in American, at least) don’t really work. I have found more support in community-level care than in anything set up by the government — and this is indeed an indictment; for too long we've been ignored and silenced.
I myself can't afford my own medication, while my friends — also chronically ill and disabled — have been judged incompetent due to the way they speak or look, not hired for work, unable to access event spaces to grow their careers, not allowed to work from home before the pandemic began, and not believed by doctors. The list goes on; you know it as well as I do.
And so the scraps of mentions (from anyone) just aren't going to be enough. I hope going forward we will see a centering on disability, that we will have resources and programs and access to the true care we need. I don’t want us to give up or find complacency.
And I think (or, I hope) that we will see these conversations — both around the problem and the solution — unfold more and more, at least from our new President-elect (you can read his stance on disability here).
Abelism is everywhere
Beyond that, ableism is everywhere. It runs deep. And no one presidency will fix it. Period. It’s on everyone because it is insidious. It is when we see someone assume another person’s incompetence because of their appearance, behavior, or disability.
It’s when your favorite events (Poetry readings! Museums!) or spaces are not accessible.
It’s when people tell their friends with immunocompromised systems that COVID is “not a big deal” or that we’re “over-worrying.”
It’s when my mother, disabled, has to wait three months for an appointment, only to have her insurance screw her over because of pre-existing conditions.
It’s when people see me and assume I’m completely fine, and that I am lying, despite me saying I am actively and chronically and incurably sick.
It’s when people of color and poor folks are VASTLY and disproportionately undiagnosed, ignored, or told they are exaggerating their pain.
It’s when people like you and me are erased from the conversation. So, yes, disability was mentioned in President-elect's Biden’s speech and I’m so happy it was. I was SO HAPPY.
But let’s hope — and make sure — this is the start of real momentum.
Stand up for us
If you are reading this and you are not disabled (in which case, thank you for being here), it's also up to you to stand up for those who can't always fight for themselves. In the office. At home. In your friend group. And in private when you get no "points" from it.
I am ashamed to say I rarely thought about disability before being diagnosed with ankylosing spondylitis years ago, but it’s top of mind for me now — and it should be for you, too.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?