As 2021 draws to a rather messy close, especially for people with disabilities, it’s time for another round of disability-themed New Year’s Resolutions.
Last year’s resolutions here were focused on disabled people’ s individual habits. This year, let’s look at resolutions for the disability community as a whole. There are scores of worthwhile goals. Here are a few that have the potential to make the most impact:
Make sure any normalization of Covid doesn’t leave disabled and chronically ill people unacceptably vulnerable.
The disability community started 2021 fighting for access to vaccination — a fairly straightforward battle. We enter 2022 fighting just as hard, but against more complex and diffuse problems
There may be no way now to completely eradicate Covid-19, or to fully protect the most medically and practically vulnerable among us from its effects. But it’s not out of the question that in 2022, we could do a better job not just with Covid itself, but how it affects the disability community. We can do this by squarely confronting the now familiar matrix of pandemic problems specifically affecting disabled and chronically ill people, including substantial overlap with the elderly. These familiar problems for us. But they are much too often forgotten or misunderstood by our nondisabled neighbors, government leaders, and even scientific experts.
Higher risk and vulnerability
Many of us have medical conditions that make it more likely we will catch Covid, and that if we do, our risk of serious illness or death is higher — even if we are fully vaccinated. Many of us also live in practical situations — like living in congregate care facilities or having retail jobs that can’t be done from home — that limit our ability to protect ourselves.
Inadequate access to preventative measures
Even now, there are people with disabilities who face accessibility barriers to vaccination. This includes “homebound” people, those who lack adequate transportation, and people who have extra difficulty navigating web-based registration systems. For some disabled people, like people with lung diseases or autism, even wearing a mask really can be too difficult.
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Onus on disabled people to protect ourselves
As the already shaky commitment to society-wide pandemic prevention erodes even further, a consensus could develop that those of us at highest risk should be solely responsible for protecting ourselves. We will need to fight hard to maintain some semblance of social responsibility with Covid, so disabled and chronically ill people aren’t left completely on our own, and forced to essentially hide from our fellow citizens who decide they are “done with Covid.”
We need to resolve now that by the end of 2022, we will substantially reduce risk, illness, and death rates from Covid-19, specifically for people with disabilities and chronic illnesses. And we need to ensure that disabled and chronically ill people aren’t the only people forced to isolate ourselves because everyone else has forgotten or minimized the danger.
Maintain or increase disabled voter participation.
Earlier this year, disability voting researchers at Rutgers University found that 2020 voting rates for people with disabilities in the U.S. rose substantially, thanks in part to more methods of casting a vote being made easily available as a pandemic measure.
Can we maintain this progress? Can we finally close the persistent voting participation gap between people with and without disabilities? There are a few things we can at least try to do as we approach the November 2022 Midterm Elections.
First, we can make easier access to mail-in voting and a variety of other methods more permanent. Mail-in ballots alone don’t solve all disabled people’s voting accessibility problems. But along with more accessible polling sites and machines, and early voting opportunities, voting by mail makes voting easier for everyone, especially people with disabilities for whom voting in the traditional manner is often inherently more difficult.
Second, we must resist efforts across the U.S. to restrict voting laws and procedures. Whatever makes voting more difficult for anyone — with more steps, more bureaucracy, and fewer ways to do it — makes voting less accessible to people with disabilities.
Third, disabled people need something to vote for. The voting gap for disabled people isn’t only about accessibility. Many still feel disengaged from politics, partly because candidates don’t address real-life disability issues in any sort of detail. In 2022, state and local candidates in particular need to offer meaningful, well-researched disability policy platforms. Fortunately, they can follow the lead of the many 2020 Presidential candidates who did put out detailed and ambitious platforms on disability policy.
3. Home care
Expand home care and increase home care worker pay.
Millions of people, young and old alike, have disabilities that among other things, require us to get help from other people to do everyday tasks — like bathing, toileting, dressing, taking medications, grooming, cooking, shopping, housekeeping, and daily planning. Home care, or “Home and Community Based Services” enables us to get this help in our own homes so we don’t have to live in instructional settings like nursing homes.
Right now, the disability community is looking at a contradiction with home care. On the one hand, we have never been closer to winning a meaningful federal effort to provide these services to all who need them and are eligible. At the same time though, existing home care is in crisis. Low and stagnant wages and the chaos of the pandemic have decimated the home care workforce.
Until just a few weeks ago, it looked like Congress would actually pass $150 billion in additional spending over 10 years specifically on Home and Community Based Services, as part of the Build Back Better package. Hopes for this have dimmed considerably.
But this effort doesn’t have to be over. The twin goals of eliminating home care waiting lists, and stabilizing the home care workforce by raising worker pay should be rolled over into disability community resolutions for 2022. And if it can’t all be done in one package, then Congress and the states still might be able to get something done so at least current home care users can continue to live independently in the community, with the help of stable, high-quality staff.
4. Disability policy
Finish other unfinished business.
The disability community has made impressive progress on a number of other specific disability policy goals over the last few years. 2022 could be the year to push some of them over the finish line. For example:
It’s long past time to substantially increase Social Security Disability Insurance and Supplemental Security Income benefits, and to reform eligibility rules and thresholds so it’s easier for disabled people to work, save, and marry without losing benefits.
Phasing out sub-minimum wage
A Depression-era law allows certain employers ot pay some disabled people far under minimum wage. It was once intended to open up job opportunities for disabled people where none supposedly existed. But this program has long since become unnecessary, exploitative, and a dead end poverty trap.
Ending electric shock
There is only one facility left in the U.S. where electric shocks are used to “treat” autistic people, the Judge Rotenburg Center in Massachusetts. Advocates have been trying for years to get the FDA to stop the practice, and it finally did in 2020. But a court injunction this summer has allowed the practice to continue. It needs to be stopped once and for all.
Airlines and wheelchairs
In 2021, a disability activist named Engracia Figueroa died from injuries caused by a loaner wheelchair she was using because United Airlines mishandled and wrecked her own specialized wheelchair. It’s just one example of how poorly airlines serve passengers with disabilities. It’s an individual tragedy and outrage, but an industry-wide problem that is just beginning to be addressed by Congress. Sen. Tammy Duckworth, who uses a wheelchair herself, is spearheading this effort.
These are just a handful of the smaller-scale, specific policy fixes that could be completed in 2022, if we make the necessary efforts to do so.
5. Disability culture
More books, publications, journalism, movies, and TV shows by people with disabilities.
Disability culture is more varied, exciting, and authentic now than it has ever been. Here are just few recent highlights:
- Films like “A Quiet Place” and TV shows like “Ordinary Joe” that not only depict realistic disability stories, but finally cast disabled actors to portray disabled characters.
- YouTubers like “Squirmy and Grubs,” who share everyday life with disabilities, and Judy Heumann, who profiles disability issues and interviews leaders in the disability community.
Hopefully, 2022 will be an even richer year for disability culture produced by people with disabilities, speaking eloquently to both disabled and non-disabled audiences.
Fulfilling these resolutions will require a combination of individual efforts by people with disabilities, and collective action by the disability community and our disability organizations.
One key to doing better than we have in the past may be to expand disability community thinking and activity beyond the fairly small and still too homogenous group of traditional disability leaders, to include all kinds of disabled people, such as:
- disabled people of color
- LGBTQ+ disabled people
- people with all types and combinations of disabilities — physical, intellectual, sensory, and mental
- people with disabilities who aren’t active in activism or disability culture
- disabled people with diverse political, philosophical, religious, and cultural perspectives
We will also in some cases need the cooperation of non-disabled allies and other mainstream social institutions. But we also have to believe that all of these resolutions are within the power of disabled people ourselves to achieve.