On disability, ableism, Long Covid, and opportunities for social change
An Imani Barbarin interview, and a little Cory Doctorow
I was so impressed by this Imani Barbarin interview, which packs several big ideas into a short amount of time, that I wanted to do a short post on it.
Barbarin explains that ableism isn’t just about disabled people, it can be found in the ways that healthy, able-bodied people talk to themselves. When you find yourself thinking that you only have value when you’re working, when you find it difficult to believe that you have value just for being a person, whether you’re productive or not - that’s ableism.
There was also a gut-wrenching insight about the Gaza genocide: that Israel deliberately uses weapons that will maim rather than kill, because they believe the world will turn their backs on the Palestinians once they become disabled.
And Barbarian talks about Long Covid, which I love because I sometimes feel like the Disability world and the worlds of medically neglected chronic illnesses (Long Covid, ME/CFS, Ehlers Danlos, Sjogrens, chronic Lyme and others) are separate. I love that Barbarin connects the two. She mentions that we’re looking at a future where 8-10% of the population has lifelong disabilities from Long Covid - what does it mean to live in a world that doesn’t value disabled people, but where a large segment of the population, including people of every age, is disabled? What does it mean to live in a world that denies disability from Long Covid, where many of those who are disabled are afraid to admit it, perhaps even to themselves?
Crises and opportunities for social change
Another video I watched recently was one with Cory Doctorow. He’s talking about the internet and social media, but he said something about how we get social change that I think applies to a lot of different issues.
When Doctorow described the policy changes he wants to see which would deliver a better internet and better social media, the interviewer asked him if those policy changes are realistic. Doctorow replied that a lot of things seem impossible, until suddenly they don’t. A crisis comes along where it becomes clear that the old way isn’t working any more, and people start looking for a new solution. The job of those who already know what we should be doing to build a better future is simply to keep telling the truth, to have a plan, and to be ready for that moment of opportunity when it comes.
I feel like I see a lot of despair and burnout among those who are asking for sensible Covid mitigations like N95 masks in hospitals and air filters in schools. People feel like they’re banging their heads against a brick wall and getting nothing in return for all their hard advocacy work. But what if we could reframe our advocacy to say: if you aren’t seeing much success it doesn’t mean you’re failing, it just means your moment hasn’t yet arrived. If you’re showing the way to a better future, if you’re making an alternative possibility available, then you’ get to tell yourself that you’re winning at advocacy. Even if you don’t know whether, in the long term, you’re actually going to win.
Hope, and ME
My own community is, first and foremost, the ME (or ME/CFS) community, and it seems strange to talk about hope and opportunity from this perspective. This is a community in which profoundly ill people have done incredible, heroic advocacy work for decades, with no acknowledgement outside our community, and while there have been successes, the pace of change has been glacially slow.
Many of us in this community find hope a difficult, thorny subject. It is easier to have hope if things are going relatively well for you. If I was going to be painfully honest with myself, I’d admit that my own sense of hope comes from the fact that my ME is only moderate and not severe, and from the financial help my family gives me which means that, unlike most Canadians who are disabled and unable to work, I do not live in poverty. It’s easier to be hopeful when I have access to medical care, but I have to access this care privately, which most people cannot afford to do. It’s important to try to find a balance, to lean into hope and optimism when these are available, while still holding in my heart those whose struggles are harder than my own.
Well said