As I write this, there are people in this terrifying administration still actively trying to repeal the Affordable Care Act – the only reason that I, and many other disabled and chronically ill people in the US, have access to health insurance.
If the ACA is overturned, we’ll return to the old system: one in which insurance companies can charge whatever they want, their product a privilege for those who can afford it at full price. Those who can’t will once again have no coverage at all.
A lot of people with chronic conditions will go back to being branded uninsurable now that there won’t be a law preventing it, because a lot of these companies just want to collect premiums, not actually pay for any care.
The current system isn’t perfect. It can be plenty hard for us disabled folks sometimes. My subsidized low-income plan covered a necessary surgery I’d gone without for over a decade, but it also refused to pay for the specialized wheelchair my doctor said I needed. The insurance company insisted a cheaper and more basic model that would injure my wrists would be fine. I had to let my friends fundraise to pay for the right one, and now that it needs repairs, there’s nothing my insurance can do for me.
More Radical Reads: Who Really Needs a Wheelchair?: Let’s Stop Accusing Disabled Folks of Being Lazy
I have friends who spend nearly as much for medications every month as they do on rent.
But at least there’s a way to access them at all.
We as disabled people have always been at the mercy of a complicated web of systems that suspend us somewhere between struggling and thriving. Pulling any one of those threads can bring all of us crashing down at any given moment.
The threat to base-level life and livelihood has become more real than ever, and is at the center of many, if not most, disability activists’ work at the moment. Fighting for equal rights and access will always be important, but lately it’s had to take a back seat to fighting to simply survive. For this reason, supporting disability activists and self-advocates might start to look very different in the near future from the way it does now.
If you’re a person who wants to be an ally to the disability community, what we’re going to need from you to sustain a movement is going to be, primarily, help sustaining ourselves.
Many of us are not going to be able to actively battle against things like ADA violations, workplace and housing discrimination, Social Security marriage penalties, and other issues that are vital to the quality of life of disabled people. This is not only because it will be even more urgent to advocate for medical care, but because many of us – especially those of us with chronic illnesses – are going to be severely limited in the ways we’re able to move through the world without it.
Support might mean taking on some of these battles for us. While disabled people are dealing with more personal struggles to stay alive and afloat and as healthy as possible, our abled allies and accomplices may be better equipped to do the heavy lifting when it comes to our ongoing fights to be seen and considered. This doesn’t mean they should center themselves in the narrative, but it does mean they could do more to prop up the voices of disabled people who are likely to be extra tired, extra scared, extra angry, and extra vulnerable right now.
Or, it might mean supporting us in other ways. Check in on your sick and disabled friends, especially if you know their access to health care is in jeopardy or, worse, already lost. Ask and find out what they need from you.
Is it help to cook, clean, or manage activities of daily living? Is it rides to events (including marches, rallies, and protests, or out to the polls), or a person to provide physical support once they get there? If you have financial means, consider contributing to disabled people’s fundraisers. Even now, there is never a shortage of disabled people needing help with alternative treatments, equipment, therapies, and other expenses that may not be covered by insurance or public health coverage.
The amount of need will only go up if subsidized plans and guaranteed coverage for preexisting conditions go away. Even when medical needs are covered, disabled and chronically ill folks often need help with bills and daily expenses, especially if we’re not able to work. If there’s someone in your life who could be spending their energy working to create a better world for disabled people if they weren’t constantly occupied with the struggle to stay housed, fed, and medicated, see if there’s a way you can help.
More Radical Reads: How To Center People With High Needs in the Disability Movement
There’s also going to be a need for people willing to go up against the loudest voices in this new and scary society and defend us. The political and social climate already building under 45 is fueled by what seems like a new license to be openly prejudiced and discriminatory, and ableism is not exempt from the variety of -isms that emboldened bigots now feel comfortable putting on display.
There will be more people insisting that, at whatever level of disability, we are just lazy if we don’t meet preset productivity standards. There will be self-anointed geniuses proposing that we just be allowed to die out if we can’t “contribute” to society in the way they consider meaningful. There will be attacks on resources and supports under the pretense that there aren’t enough to go around, and people have to work to “deserve” them.
We won’t be able to defend ourselves unless that’s the only thing we do: fending off the constant barrage of attacks on our humanity. This won’t leave room for protests against the loss of our rights and protections, devoting time to medical care and necessary rest, or even, ironically, trying to work and participate in the economy for those of us able to. We’ll need people who will fight back when we are too emotionally and physically exhausted to do so; who will share our stories and speak our names and make sure the “leeches” they want to paint us as have human faces.
The disability activism movement as we know it won’t go anywhere. Until we finally hunt ableism out of every corner of our greater lived existence as a society and create a world where everyone has equal access, not as an afterthought but as an intentional function of design, there will always be a need for people to help us fight for our rights and autonomy. But in order for us to be able to keep up with those fights, we are going to need people willing to take a stand and refuse to let the system let us die before we have a chance to be heard.
[Featured Image: A person with beige skin, short dark hair, and dark moustache and beard is standing in front of a blurred sunlit garden. They are wearing a grey jacket and have a serious expression on their face. Source: Pexels.com]