by Andrew Pulrang
A recent Twitter exchange I participated in briefly got me thinking about Accessible Parking, once referred to as “Handicapped Parking.” The conversation started with a wheelchair user sharing frustration at not being able to find an empty Accessible Parking space. It developed into a discussion of whether there might be better ways to organize and allocate designated Accessible Parking.
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The exchange didn’t last long. And it was pretty civil and thoughtful. I bring it up only because even though I use Accessible Parking myself, it’s always been one of the disability issues I am least interested in.
That’s probably because I rarely feel deprived of it, since I don't go places very much. It’s easy to be blase about an advocacy issue when doesn’t directly affect you too often. When I still traveled a lot for work, especially to bigger cities and government buildings to attend meetings and rallies for disability issues, my need for Accessible parking was far more frequent and acute. But even then availability always felt to me more like luck than a matter of justice. Now, where I live, and given my tendency to stay home unless absolutely necessary, I usually find Accessible Parking when I need it. Plus, the combination of time and, frankly, the work of the Independent Living Center in my hometown, where I used to work and am not on the board, means that most of the Accessible Parking I see and need to use is properly laid out and marked.
Also, for a variety of reasons I have never even been all that upset by improper use of Accessible Parking spaces, or convinced that it is widely abused by people who shouldn’t be using them. It’s wrong of course. It causes problems for disabled people, including me occasionally. But I just can’t get angry about it the way some people do, and the way I get angry about other disability issues.
But this Twitter conversation helped me realize one thing about Accessible Parking as a disability issue: it’s at least unambiguous and fairly easy to understand. As an exercise, I tried to break all of it down into its component parts. For example:
Why do some disabled people need Accessible Parking?
• So there’s extra space around our parked vehicles for maneuvering wheelchairs and other mobility aids.
• Because some of us have physical difficulty getting from where our car is parked to our destination, due to distance, terrain, or complex pathways.
• To increase the chances that on any given day or moment, parking will be available for us, even when the lot is otherwise full of cars.
What’s important to consider in evaluating how Accessible Parking works?
• Width, layout, and marking.
• Distance to entrances.
• The number of designated spaces available.
• Who is and isn’t eligible to use Accessible Parking.
• Voluntary compliance through awareness and moral persuasion.
• Legal enforcement through official monitoring, ticketing, and fines.
Accessible Parking is an especially practical, technical disability issue. It seems like there isn’t much of a subjective, cultural, or political component to it. Still, there have always been some low-key controversies among disability communities themselves over different approaches to Accessible Parking, including:
• Expansive approach ... in which many people with a wide range of disabilities can and should be able use accessible parking.
• Restrictive approach ... the idea that Accessible Parking should be reserved for a smaller number of significantly mobility-impaired people.
• Old people vs. young, wheelchair users vs. other disabled people, visibly disabled vs. invisibly disabled, disabled passengers vs. drivers, etc.
What’s your take on Accessible Parking, if you have one at all?
Judy Heumann: 1947-2023
I posted this on my Facebook page March 4, 2023:
The disability community lost one of its most consequential leaders today, Judy Heumann. I never met Judy in person, but I talked with her once or twice over Zoom during the pandemic. And like so many other disabled people, I learned from her even when I didn't realize I was doing it. One of my favorite quotes about disability is attributed to her:
“Independent Living is not doing things by yourself, it is being in control of how things are done.”
If you haven't already, now is a good time to watch the Netflix documentary "Crip Camp," which focuses quite a bit on Judy while placing her work in context with others in the disability rights movement.
For my five "Recommended" articles this month, I thought I would share five of my favorite tributes to Judy Heumann so far ...
Judy Heumann, Who Led the Fight for Disability Rights, Dies at 75
Alex Traub, New York Times - March 5, 2023
A good general overview of Judy’s life, work, and historic role in disability history.
Activist Judy Heumann led a reimagining of what it means to be disabled
Joseph Shapiro, National Public Radio - March 4, 2023
A deeper, more emotionally resonant recollection of Judy Heumann and what she means to disabled people and disability communities.
The Best Thing You Can Do With A Pedestal is to Take a Sledgehammer to it
Rebecca Cokley, Medium - March 7, 2023
A heartfelt tribute to Judy, but with important questions about the value and risks of having too much reverence for a few individual leaders in a movement and community of millions.
March 5 Tweet from The Squeaky Wheel
The satirical disability website’s unique perspective on how one generation’s tireless work for rights and freedoms can mean for future generations’ ability to approach hardships from a variety of possible angles — including making light of them.
Drunk History Video
Case in point, (see above), from several years ago, Comedy Central’s “Drunk History” interprets the story of the Section 504 Sit-In and Judy Heumann’s role on them.
In Forbes.com …
A Disability Advocacy Startup Strives To Model Its Own Mission
February 20, 2023
Disability communities around the U.S. are getting to know a new advocacy organization, New Disabled South.
Lots of disability-focused nonprofits start up every year. New Disabled South is notable. It has the potential to make an unusually focused impact – well beyond a city or small town, a tiny, insular corner of the internet, or a single disabled person's personal ambitions. It may also serve as a model for other disability organizations, and other nonprofits, on how to make methods consistent with mission.
New Disabled South is a nonprofit disability advocacy organization with a regional scope – broader than local or state level, but more specific than a national disability organization. Its founder and CEO is Dom Kelly, a disabled Georgia man with extensive experience over the last several years doing disability-related outreach, organizing and advocacy work, first for Fair Fight Action and then for Stacey Abrams' 2022 campaign for Governor of Georgia.
New Disabled South has a small staff, plus governing and advisory teams that are deeply diverse, and most of whom are also people with disabilities. Current staff includes Kelly and Chief Operating Officer Kehsi Iman Wilson, plus three others dedicated to organizing and advocacy, finance, and communications. The organization is led by a 10-member Board of Directors, and guided by a 12-member Advisory Council. Staff, board, and advisory council are all made up of people experienced in the field of disability activism, and diverse across race, gender, and sexual orientation. Every member of the staff and Board has some kind of disability. And 5 out of 12 members of the Advisory Council are disabled as well.
New Disabled South’s unique geographic focus includes 14 states in the Southeastern U.S., as far west as Texas and Oklahoma, and to Virginia and West Virginia to the North.
Its staffing diversity and representation, and its regional approach are only parts of what make New Disabled South different and an intriguing prospect for the future of nonprofit disability advocacy. Kelly and his team also employ other approaches that already make the new organization stand out, and suggest some bold ideas for the future of organized disability advocacy.
New Disabled South’s Mission is, “To improve the lives of disabled people and cultivate strong disability rights and disability justice frameworks in the South.” Its Vision statement calls for, “A South where liberation and justice for all disabled people is achievable.”
While these are notably broad and ambitious goals, New Disabled South’s work centers on more specific and practical disability policy issues that are organized into three “priority policy buckets":
1. Poverty and Care
This includes advocating for benefits and services designed to enable people with any disability to live independent and financially secure lives. One issue Kelly specifically cites is healthcare, in particular, Southern states’ failure to take up the Medicaid Expansions available in the Affordable Care Act. This is a nationwide issue as well, but is a much more severe problem in the South, one that acutely affects people with disabilities and people of color. New Disabled South has also recently spoken out about the need to raise pay and eliminate waiting lists for Home and Community Based Services, the everyday hands-on services so many people with disabilities need to live independently and avoid institutionalization. These are services that tens of thousands of disabled people are qualified for, but are denied only due to lack of funding. It’s another problem not unique to the South but more common and harmful to disabled people in the region.
This policy “bucket” calls attention to how disabled people are in many ways disproportionately entangled and abused by law enforcement. This includes police mistreatment, violence, and killing, and high incarceration rates. It’s one of the most critical policy areas where disability, race, and other types of social discrimination intersect and overlap. And it’s another issue that runs that much deeper in the South through the legacies of slavery and segregation.
New Disabled South’s third policy focus is on the process of government itself. It will continue and refine the ongoing fight for basic voting accessibility, flexibility, and simplicity for people with disabilities – at every stage from registration to casting votes on election day. This includes pushing back against recent state efforts, especially in the South, at making voting procedures more complex and burdensome in the name of “integrity.” These measures end up suppressing votes of people of color and people with disabilities.
In an effort to better engage with disability policy, and the political movements where policy is made, New Disabled South announced last week the start of its new 501(c)(4) "political arm," New Disabled South Rising. 501(c)(4) status allows some greater freedom to engage in more partisan advocacy than the core organization’s 501(c)(3) designation allows. While most disability advocacy organizations do valuable work on disability policy while remaining strictly nonpartisan, 501(c)(3) rules limit how much and in what ways they can interact directly with candidates and lawmakers to influence the direction of disability policy. Properly setting up a second, more political operation right from the start shows how Kelly and his team are preparing to advocate disability issues as powerfully as possible in the heart of today’s political life.
Kelly is hopeful about this, despite the political polarization which threatens to divide disability communities the way it seems to divide every community. “If we take the political party out of it completely and have discussions about basic policy,” he says, “I'd venture to say that most disabled people agree on many issues that impact our day to day lives.”
Kelly and his team see similar disability issues across Southern states, like poor health coverage, waitlists for services, incarceration and police violence, poverty, and restrictive and inaccessible voting. That is why the regional approach is so important and promising. “When we can look at these critical issues from a regional perspective,” Kelly says, “look at the throughlines between Georgia and Mississippi and Louisiana and wherever else, we can think holistically about how we organize and how we find solutions.”
Patterns of policy decisions affecting people with disabilities, such as voting and health care – and historically misunderstood intersections of race and disability, and compounding effects of racism and ableism are especially acute in the South. And the call for something more refined than a generic “disability rights” stance. Kelly argues for both regional and cultural specificity, noting, “You can't expect to talk to a different racial or ethnic community about the issues they are facing without understanding their history, traditions, etc.” Disabled people of all walks of life have much in common. But different disability communities experience disability differently.
Staffing and compensation
If New Disabled South’s goal is to empower people with disabilities and lift them out of poverty, then possibly its most powerful statement so far is its approach to its own employees.
It starts with comparatively high pay for the nonprofit sector, especially disability nonprofits. Staff salaries are in the realm of $85,000 to $90,000, depending on position, and in the $115,000 to $130,00 range for top management. While this is still low compared to salaries of at least some disability nonprofit CEOs, the whole salary range is a lot more than what starting day to day staff at most disability organizations make.
From the beginning, Kelly was determined not to be, as he says, “obsessed” with keeping salaries and overhead low, which feeds into the common implication that operating on a shoestring and paying staff subsistence wages is some kind of virtue for nonprofits. This tends to lead to nonprofits having what Kelly deems, “criminally low pay and terrible benefits.” Among other things this makes it harder, sometimes impossible, for marginalized and less well-off people to commit to this kind of work.
It is an even more critical problem for disabled people who want to work in disability advocacy. Living with a disability is expensive. And far too many disabled employees at disability organizations are forced to deal with a minefield of government benefits eligibility rules because they earn low salaries and have few if any benefits. Substantially higher salaries alone can all but eliminate this added worry for disabled employees.
New Disabled South’s benefits package is even more impressive. According to Kelly, it includes 100% Platinum health insurance premium coverage for employees, (50% for dependents), dental and vision, life insurance, (100% of premium covered for both employees and dependents), and $1,000 per year of professional development stipends. New Disabled South also allows 12 weeks paid family leave and 2 months paid sabbatical after 4 years of service.
The organization’s regular work routines are also designed for flexibility and sustainability. It runs on a four-day, 32-hour work week. There is an unlimited paid time off / sick leave policy. Work from home is allowed and a stipend for that provided. And there are over 3 weeks in organization-wide office closures, including a two-week winter break and one week break in summer.
All of these generous and flexible staffing approaches are designed to ensure that New Disabled South can have and keep the best disabled staff possible. At the same time, they demonstrate how other nonprofit employers could and perhaps should treat all their employees, especially those with disabilities.
For Kelly, having the right team is critical. “I also believe in hiring people who know more than you,” he says. “So if you can figure out how to create an income stream but you don't know how to manage a budget, hire someone who does.” His first full-time hire was Chief Operating Officer Kehsi Iman Wilson, an expert in operations and Human Resources. “She teaches me so much everyday,” says Kelly, “and we are really a team.”
Asked how all of this is funded, Kelly says that New Disabled South relies on many individual donors, as well as foundation support. Fortunately, Kelly actually likes fundraising. “It really brings me joy to raise money,” he says, “especially when it's to make change for our community.”
New Disabled South is less than half a year old. But it is already notable in the disability advocacy community for its bold approaches, authenticity, and competence. It is idealistic but focused, broad in scope, but practical and specific. And it seems to be grounded in organizational structures that both reflect and power its mission and values.
It’s a model others with disabilities can learn from. And Dom Kelly has advice for people with disabilities who want to take the initiative and create their own opportunities:
“Find your people in this community who motivate you and push you, work through your fears, and carve out that space,” he says. “Don't do it alone, though. Ask the people you admire to be a part of it, hire people smarter than you, and do whatever you have to do to make the dream a reality.”
4 Tips For Engaging With Disabled People On Social Media
February 28, 2023
A recent National Public Radio article on how social media affects teenagers is just one angle on what has almost become simply an assumed truth. This is, that Facebook, Twitter, Tik Tok, YouTube, and whatever becomes the next big thing in social media are alluring and in some ways liberating, but fundamentally dangerous and corrosive.
The article notes ominous signs and offers up several cautions. But it also acknowledges some real benefits that teens, and people of any age, can get from social media. Social media seems to encourage some of the worst communication habits, and short circuits our analytical and nuanced thinking skills. At the same time, these internet-based applications connect people across the globe like never before, and offer marginalized, oppressed people a more potent voice in the public discourse.
These same pluses and minuses certainly apply for people with disabilities in social media. It’s an especially important question for disabled people. On balance, does social media open up life to more social interaction and wider experiences, or encourage more isolation by making it seem less restrictive than traditional physical isolation disabled people have so often experienced. Also, does social media increase social connection and positive validation? Or, does it simply amplify the same old bullying, ridicule, and other forms of ableism that have always plagued people with disabilities?
It’s too simple and too much to condemn social media wholesale. And for many disabled people, it’s impractical and at this point unthinkable to swear off social media entirely, even if it sometimes seems like it would be healthier to do so . So this raises a question for all of us, especially people who aren’t disabled. What can we do to make social media a more positive environment for people with disabilities?
Here are some suggestions:
1. Don't impose unsolicited advice.
... even if you're certain that it's brilliant and essential.
One of the most common annoyances disabled people experience is being inundated with advice from people who are enthusiastic and sure of themselves, but actually know little about disabled people's lives. For example:
Pushing healthy lifestyle advice and alternative treatments – like special diets rumored to alleviate autism, trendy new therapies, herbal remedies, meditation routines, and yoga, and just plain healthier eating for that ever-popular cure-all, losing weight.
Guidance on the “right” way to handle ableist comments and discrimination – most often advice to calm down, let insults roll off our backs, and understand that people are usually uninformed, not mean, with the added implication that disabled people have a responsibility to politely “educate” others about disability.
Lectures on which terminology to use – either urging disabled people not to nitpick whether people say “handicapped,” “special needs,” or “disabled” – or else a nondisabled person who once sat through a disability awareness seminar aggressively scolding us for calling ourselves “disabled” and not “person with a disability.”
This kind of advice might be right and appropriate sometimes. But more often it’s so indiscriminately and aggressively promoted that it’s become one of disabled people’s most dreaded social media phenomena. The best way to avoid being this particular kind of annoying is to make sure you don’t go into conversations convinced that your idea has the power to change a disabled person's life for the better. Better yet, only give advice to a disabled person if they clearly ask for it.
2. Amplify disabled people's voices.
... before adding your own.
More disabled people are being seen and heard on disability issues than ever before. But they still by and large have trouble being noticed, listened to and respected. Nondisabled people still have a disproportionately dominant voice in disability discourse. This includes doctors, scientists, therapists, teachers – in other words, people with credentials. But it most notably includes parents and families of disabled children, siblings, and spouses. Of course, families of disabled people have their own entirely valid perspectives on disability. But this is still too often stretched to make them unappointed spokespeople for the disabled people in their lives, and even for what all disabled people need. This feeds the idea that disabled people are not reliable interpreters of our own experiences, and need nondisabled people to vouch for us.
The best way to avoid contributing to this “talking over us” phenomenon is to lift disabled people’s voices. To start with, don't say something that disabled people are already saying, unless you really have something new to add. Maybe you do. But ask yourself first and answer honestly – am I just echoing here in hopes of being praised? Am I disagreeing because I just can’t help myself? Or, do I really have something to say? If the answer to any of these questions is “maybe yes,” let what disabled people say stand without comment or alteration. That is the least you can do, but it’s actually a lot.
Beyond this, most social media platforms have tools that allow you to show support by promoting what disabled people are saying as directly as possible and without unnecessary comment. “Like” and “Share.” Let the original author's voice carry the message. Don't try to say it better yourself. Comment when you have something to add, not to contradict. And if you feel compelled to debate, ask if you can discuss the topic privately, and respect the disabled person’s answer.
3. Remember that it's almost always okay to just say nothing.
... because not every comment or question requires a response from you.
Like everyone else, disabled people are justifiably wary of being pestered, insulted, and socially punished on social media. So as much as possible, try to avoid these types of criticism and comment:
Small, pedantic matters – like grammar and terminology, or exact, minute regulations for some aspect of Social Security Disability eligibility, or the Americans with Disabilities Act.
Changing the subject – Such as criticizing the topic itself, saying another topic is more important, or bringing in completely unrelated stories or ideas. For example, when a disabled person shares a story of serious job discrimination, people will often reply with tales of how uncomfortable they were when they had a cast for three months and couldn’t walk. Or, instead of joining in a discussion of disability pride, someone might angrily insist that it’s much more important to talk about health care or benefits policy. Respect the topic. If you think it’s unimportant, move on.
Ad hominem attacks — including attributing all disability discrimination and accessibility barriers to whichever person you happen to be dealing with at the moment, or just being personally rude and dismissive when it’s an idea, policy, or action you have a problem with. Don't attack the person, argue ideas.
Disagreeing with something someone says doesn't obligate you to correct or debate them. Sometimes, the best way to oppose a line of conversation or social media trend is to not engage with it, starve it of attention.
4. Brush up on Logical Fallacies.
If you do decide it’s time to debate important questions for real, this logical fallacies website on is a good place to visit first. It’s a good resource for improving the quality of any online discourse. But a few logical fallacies are particularly common in discussions about disability. For instance:
Personal Incredulity - When a non-disabled person simply doesn’t believe that a disabled person’s situation can possibly be as bad as they say.
Slippery Slope - Arguing that if certain reasonable demands are met, like accessible stores, or funding for home care – it will lead to unreasonable outcomes, like stringent access requirements nobody can comply with, or an uncontrollable and expensive demand for bottomless services that will bankrupt the state.
No True Scotsman - Insisting that someone who doesn’t display certain narrow and stereotypical characteristics of autism can’t be autistic – that disabled people who aren’t impaired, helpless, and pitiful as expected shouldn’t therefore be considered disabled.
None of these are hard and fast rules. None of them alone can ensure social media spaces are safe and friendly for disabled people all the time. But they may be simple, easy to remember and implement ways for nondisabled people especially to make a good faith effort at welcoming and uplifting disabled people in online discourse and culture.
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Next issue, April 2023.
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