Grateful
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Optimism and gratitude can be tricky in the disability community. Too much of it can come across as naive and complacent. Too little of it can sap motivation and resilience. Finding solid reasons to be grateful can be especially difficult for disabled people at this time, but it’s well worth a try.
Of course, this year has been full of reasons for disappointment, pessimism, and fear. COVID-19 is still all around us, and people are even less willing to take precautions to protect the elderly, the disabled, and the chronically ill. We have had to adjust downward our expectations for major disability legislation and funding from Congress. And no matter what happens in disability culture, activism, and politics, millions of disabled people continue to deal with ableism and economic hardship that rarely changes.
It is also important to remember that deliberate and forced efforts to “look on the bright side” can be counterproductive and distressing. People with disabilities in particular face strong societal pressures to “stay positive” no matter what, which seem to far exceed the actual usefulness of informed, realistic optimism. People with disabilities are particularly sensitive to “toxic positivity” that denies or downplays the very real barriers and problems they face.
Still, Thanksgiving is a fitting day each year to express gratitude. Here are five things our diverse, fragmented, and damaged, yet strong and vibrant, disability community can be thankful for.
1. An effective COVID-19 vaccine
A little less than a year after COVID-19 vaccines were first announced, the initial optimism has faded considerably. Even the most supportive of vaccines have doubts about their exact effectiveness, and while most people are well aware, they can’t help but feel some disappointment that a vaccine has not yet conquered the virus.
“Breakthrough” infections among fully vaccinated people certainly do occur, and infection rates can rise even in areas with high vaccination rates. The pandemic seems far from over. But hospitalization and death rates seem to be much better controlled in areas with high vaccination rates. The situation is not ideal, and it is not as good as most people hoped for in the spring, but it is much better than it was without the vaccine. And, if we are honest, we must admit that our disappointment is not due to the failure of the vaccine, but to our own inflated expectations. The vaccine is working more or less as originally advertised.
It might also be helpful to remember that around this time last year, the development of several highly effective COVID-19 vaccines felt like a distant goal. With just a slightly different timeline, it’s entirely possible that we might find ourselves in a situation today with no vaccine at all, or even any in sight. Instead, at least in the United States, we have several effective vaccines that are free and widely available.
We still have to ensure that people with disabilities and chronic illnesses have practical and pragmatic access to vaccines and boosters. Accurate, easy-to-understand information about vaccines needs to be provided and accessible to everyone, including people who are blind, deaf or intellectually disabled. Some people with disabilities still have great difficulty getting vaccinated in practice, due to practical barriers or simply poor access. But these are challenges for which we should be grateful. It is much better to fight for a vaccine that exists than to continue to wait for one that has not yet been developed.
2. Substantial progress on disability issues and priorities
The U.S. House of Representatives passed the Build Back Better Act on Friday, November 19, 2021. If passed by the Senate, it would include:
Investing $150 billion in home and community-based services to reduce waiting lists and ensure better wages to fill the home care worker shortage; Providing funding to help employers and states move people off subminimum wages, expanding fair employment and economic security for people with disabilities who currently work for little more than a few dollars; Putting billions of dollars into housing assistance for people with disabilities, making accessible housing more widely available and affordable; More ambitious reforms to Social Security were proposed and, while cut, are at least being taken seriously for the first time. The lack of more substantial increases and reforms is disappointing, but it may spur a more enthusiastic advocacy movement in the near future.
These gains on disability issues are remarkable. If this bill passes intact through the Senate, it will improve the lives of people with disabilities. And having tasted success that seemed impossible just a few years ago should spur and focus efforts to do better in the future. The path to improving disability policy is clearer now than it has been in decades.
3. Political leaders and allies
Considering that nearly 18 million Americans with disabilities voted in 2020, the disability community still has too little power in U.S. politics.
Many politicians still view disability issues as a specialty and a relatively low priority. But advocates for disability rights and policy priorities have long been present in Congress. In the 1980s and 1990s, we had leaders on both sides of the aisle, including Bob Dole, Ted Kennedy, Tom Harkin, Max Cleland, David Durenberger, Tony Cohero, Major Owens, and of course President George H.W. Bush, who supported and signed the Americans with Disabilities Act.
Now, a new generation of elected officials has emerged who do more than take photo ops and pay lip service to “supporting the disabled.” They are:
Senator Tammy Duckworth – A strong advocate for a variety of disability issues, especially advocating for the Americans with Disabilities Act, advocating for disabled veterans, and transportation accessibility. She is also one of the most visible and charismatic disability elected officials in the country. Rep. Sherrod Brown – One of the key leaders pushing for major structural reforms and benefit increases to SSI. Sen. Bob Casey – One of the key leaders pushing for significant funding increases to home and community-based services (HCBS). He has been a focus on disability issues for many years and is perhaps the most influential leader on disability issues in the Senate. Senator Maggie Hassan – Another key voice on disability issues, especially HCBS funding. She has a son with cerebral palsy who uses full-time in-home care. Rep. Ayanna Pressley – In early 2020, she revealed that she has alopecia, a chronic condition that is part of the broader disability community. She has become a trusted and persuasive voice for the disability community in Congress and progressive politics, especially on the relationship between race and disability justice. Senators Elizabeth Warren and Bernie Sanders included strong commitments to improving disability policy within their broader progressive platforms, and continued to fight for the disability community’s priorities long after their presidential campaigns ended.
Other members of Congress also have good voting records on disability and related issues, even though they have not made disability one of their main issues.
Meanwhile, President Biden also deserves an honorable mention. He has been a little slow to make disability issues something of a priority, and he may well draw criticism from some disabled people who are disappointed that his initial proposals didn’t move forward. But he, along with several other 2020 presidential candidates, played a key role in moving bold disability policies out of think tanks and into mainstream policy. And as president, he has helped set the conditions where truly ambitious initiatives can hopefully be seriously debated and passed now or in the near future.
4. #FreeBritney
Pop star Britney Spears’ 14-year probation has finally ended. #FreeBritney It quickly morphed into something much more meaningful: a disability rights movement, not just for one celebrity, but for others like her.
What does this mean for other disabled people who still live under legal and economic constraints?
#FreeBritney drew attention to guardianship, a system of legally powerful restrictions and controls imposed on some disabled people that others know about. The movement has created a space to not only address the most minor cases of erroneous or inappropriate guardianship and conservatorship, but to rethink the entire rationale of these institutions. Who knows how many more disabled people will gain freedom and independence in the coming years thanks to this movement to free one pop star? There are already positive signs.
5. Quality, diversity and growth of disability culture
Until very recently, most disabled people’s exposure to anything like “disability culture” consisted of “inspirational” disabled people in the news, sentimental and sympathetic portrayals of able-bodied actors in film and television, and fundraising events to pay for treatment, surgery, and wheelchairs for disabled people. Disability culture has always been much more than this, and authentic disabled voices have always existed, but few able-bodied and disabled people had the opportunity to experience them. The Internet has changed that.
Today, the disability community has all the elements of a truly rich and vibrant culture, including:
Emily Radau, author of Demystifying Disability
Eric Garcia, author of “We’re Not Broken”
Alice Wong, author of “Making Disability Visible”
Journalists with disabilities and a disability focus:
Invalid blogs and columns:
“The Weeklyish” by Tim Villegas
“Clip News” by Kevin Gotkin
“The Clever Disabled” by Mike Irvin
“Unlocking Disorders” by Melia Nichols
Don’t include podcasts or vlogs that:
Barrier-free booth
Includes: Disability Equality Podcast
Barrier-Free Future Podcast
The human perspective
Squirmy and Grubs
Twitter hashtags and conversations:
There are also hundreds of Facebook groups focused on disability issues and experiences, TikTok creators, Twitch streamers, and people with disabilities facilitating discussion and expression across all social media platforms.
Like any social media, online ableism ranges from supportive, informed, and broad-based to critical, misguided, and insular. Some are good, some are bad. But that’s like any vibrant culture. And in some ways, the fact that there is at least some conflict is a good sign of the health and depth of ableism.
Examples of films and TV shows that depict characters with disabilities and the disability experience:
Average Joe
The Good Doctor
Atypical
sex education
Quiet place
Coda
The stories and messages remain varied, some true to the real experience of disability, some not, but more authentic portrayals by disabled actors have made a notable difference, and disabled characters are more interesting and diverse than ever before.
There’s also music:
People with disabilities have reason to be optimistic and grateful this year. As always, we need to be willing and able to put things in perspective, even if just once in late November. This isn’t easy, but it’s essential to maintain an optimistic attitude, even in the face of seemingly inexorable obstacles. Without optimism, we will not be able to change our circumstances in a way that will give us even more reasons to be grateful in the future.