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How COVID Affected the Disability Rights Movement

A chat with journalist Sara Luterman for our What Now newsletter.

Mike Mozart

Happy Monday, everyone. For this week’s edition of What Now, I spoke with the great Sara Luterman, an independent journalist who covers disability policy, politics, and culture. We talked recently about what it’s been like covering disability issues during COVID, how the pandemic pushed the needle on changes that should have happened a long, long ago, how disability rights and the labor movement go hand in hand, and my old foe, the Sia movie, Music. You can find Sara on Twitter, and read her work in The Nation and The American Prospect, among other places. 

Here’s a sneak peek of the interview with Sara Luterman. The full interview is in our premium email newsletter, What Now. Our Steward tier members are the only ones who get the full edition of What Now emailed to themalong with a host of other benefits, including full access to our site.

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What has it been like for you as a journalist over the last year covering the disability beat during COVID?

It’s been horrifying. I mean, honestly the first thing I thought of is that I would like my friends to stop dying. I have multiple friends who died last year, not from COVID directly, but because they rely on home care services and those services were disrupted. So yeah, it’s been really miserable to see the impact on my community. A lot of people have died. A lot of people I know have died. It’s been hard. 

I can’t imagine what it’s been like on both a personal and professional level. Do you feel like, as we go “back to normal” and as we have a new president in office, there’s been some amount of relief? I know, for example, that it was a very big deal that Biden included home care in his joint address—is that a notable shift towards the positive? 

It’s huge. I wasn’t expecting that at all. I wrote this piece for The Nation last year about nursing home abolition—about the idea that, instead of having people sort of warehoused in nursing homes until they die, we provide home care. It’s not an idea that I invented by any stretch of the imagination, it’s been pretty common in the disability rights and disability justice communities for decades. But I had trouble getting anyone to agree to let me write it until COVID. It’s kind of sick, but the massive death rate has really increased interest in a lot of stuff that the disability community has been talking about for years. And I wish that we could have had those discussions before so many people died. But I guess it’s good that we’ve finally gotten here. The amount of money that Joe Biden put in his infrastructure plan for home care is staggering. I interviewed folks for a piece I wrote for The American Prospect about it, and basically everyone was shocked and awed, and these are policy advocates that have been working in the field for forever. It’s amazing to be in this moment, but also I wish that getting here had a lower body count.

I wanted to talk a little bit about the May Day piece you wrote for Vox [in 2019], which focused on a regulation called 14(c) of the Fair Labor Standards Act that allows employers to pay people with disabilities less than minimum wage. I wonder if you could talk about how it’s persisted and what might be done to finally change it. 

The subminimum wage issue is a weird one. Basically there are some workers in the United States who can be paid significantly below minimum wage. It’s generally four different types of workers: people who are in prison, agricultural workers, tipped workers and people with disabilities. So, three out of four of those were basically a way to pay Black people less after slavery ended, but the disability piece actually has a really different history. Originally subminimum wage was meant to be an incentive for employers to hire and also was meant to be vocational training. So the idea was that, like, veterans coming home from war would work in these subminimum workshops for a certain period of time until they were skilled enough again to go into the main workforce. But that’s not how it ended up working out. What ended up happening instead is there are people with intellectual disabilities and blind people, though less so these days, who would end up in these subminimum wage workshops for their entire lives. I talked to a man who spent 20 years grinding little bits of metal down and they never even told them what they were for. It’s usually very repetitive work, like screwing shampoo bottle caps on. And this is seen as a service to them because there’s this idea that work has this inherent dignity. And so by employing these disabled people, the employers are providing them a service, which is just completely bananas. Sarah Jaffe has this book called Work Won’t Love You Back and I think the subminimum wage for disabled people is sort of rooted in a lot of the same ideas. That like, something about work has inherent dignity and whatever that is, is divorced from actually getting paid for some reason.