Dear friends,
Lately, everywhere I look, there are glaring examples of ableism.
Voters with disabilities were nearly twice as likely to report some difficulty casting a ballot as voters without a disability in 2020.
Alabama has banned curbside voting, Texas has restricted the types of assistance available to voters, and Florida has made it more difficult to obtain mail-in ballots and prohibited anyone from returning more than two ballots unless they are from family members.
New restrictions in Wisconsin have been challenged in the courts, and voters and advocates are understandably confused.
“This’ll be the fourth election this year. And for each election the guidance and the law has been different for ballot return assistance. Do you find that confusing? I do,” said Barbara Beckert, the director of external advocacy for Disability Rights Wisconsin. Over the last few months, she’s been fielding questions from voters who are still unsure about what they’re allowed to do.
For more information about voting with a disability, look at the ACLU’s info page and the NYC Board of Election's Accessibility page.
Misconceptions about people with disabilities underly some of the voting restrictions. Some people imagine that people with disabilities are more easily manipulated than others, so they want to control the types of assistance available.
The people I know with disabilities are extraordinarily resourceful. The obstacles they face to do the most basic things (Access-a-ride?!) force them to develop reserves of determination that most people lack.
People with disabilities also contend with condescending remarks about how inspiring they are. Mia Ives-Rublee, director of the Disability Justice Initiative at Center for American Progress, explains:
[S]o many people use our likeness and our stories to be inspiration porn. But when we are asking to be perceived as competent and take higher positions, non-disabled people are like, ‘Whoa, whoa, whoa, that’s not what we meant!’”
Misconceptions about assistive technologies and the nature of equity are also rampant.
“To see someone who is in recovery, using these tools that were fairly new to him, and doing so in a public debate where the stakes are so high and all eyes are on him – it’s pretty incredible,” said Maria Town, the president of the American Association of People with Disabilities, a Washington DC-based civil rights organization. “I have a lot of respect for what he was doing.”
Town [who has cerebral palsy] frequently reminds herself that she’s not the problem; it’s other people’s expectations: “The standards around how we perceive confidence and competence in speech are extremely narrow and extremely fraught.”
As neuroscientist and stroke survivor Jill Bolte Taylor noted in a recent essay,
A pregnant pause between a question and someone’s response is sure to make some people uncomfortable, but it doesn’t necessarily say anything profound about a person’s ability to think and reason intelligently.
A huge portion of Americans — likely more than one in four — have some sort of disability. Dr. Taylor notes that stroke is a major cause of disability in the US: each year, nearly 800,000 people suffer from strokes.
Taylor points out that both cognitive impairment and neurogenesis are poorly understood by the general public, leading to misconceptions about the capacity of those recovering from strokes. She makes the case that better understanding is important because
stroke survivors may recover more completely when those around them are supportive and compassionate.
A recent report has found 900,000 more people with disabilities in the US work force.
There were 1.05 million more disabled working-age Americans in August 2022 compared to January 2020, according to data compiled by Richard Deitz, an economist at the [Federal Reserve Bank of New York].
It is possible that remote work has been a boon for workers with disabilities.
At the same time, the Brookings think tank estimates that as many as 683,000 workers may have exited the labor force due to long COVID. This is less than half a percent of workers, but is nonetheless important for thinking about equity.
Long COVID resembles another disabling condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). People with ME/CFS frequently drop out of the workforce because of the debilitating effects of fatigue.
Zeynep Tufekci has written powerfully about activism by people suffering from ME/CFS. I urge you to read her important essay in its entirety, but I will offer you her bottom line:
National Institutes of Health (NIH) funding for ME research has been meager, now a mere $17 million per year after a recent increase — far less than that for many other illnesses with similar prevalence.
And despite growing recognition of a connection between ME and long Covid, NIH funds for long Covid research cannot be used for studies of ME.
We have to help these people, not just because postviral syndromes can strike anyone or because this research may unlock treatments for other illnesses but also out of respect for their extraordinary strength and perseverance.
The first step is to insure that the US has accurate stats on ME/CFS.
Petition the US National Center for Health Statistics (NCHS) to fix the coding for ME/CFS in order to track the mortality and morbidity of ME/CFS. This quick action is from #MEAction.
If you’re tired from all this reading, take a rest, even if you don’t suffer from postexertional malaise. Thanks for staying with it.
with love,
L