How To Find Your Disability Community

Andrew Pulrang • June 3, 2021
Disability Community from GETTY

There seems to be a wide gap between how we talk about “The Disability Community,” and the number of disabled people who actually feel like a part of it.


Most disabled people want to connect with a vibrant, supportive community of their peers. Some can’t find the disability community at all and don’t know where to look. Others do find it, but feel excluded, or can’t find a welcoming way in.


This is an especially common problem for people new to disability – like disabled youth, adults with new disabilities from illness or accident, and older people with age-related impairments. But plenty of people with lifelong disabilities also struggle to find acceptance among their disabled peers. Some of the problem stems from divisions, hierarchies and exclusivity among disabled people – the same kind of divisiveness found in every other social group and subculture.


But despite the disability community’s many faults, there are ways for individual disabled people to break through and find fellowship, support, and cooperation.


Here are three tips for people with disabilities looking for a welcoming and empowering disability community:


1. Don’t look for “The” Disability Community. Look for “A” disability community that’s right for you.


There isn’t a single, all-encompassing Disability Community. But there are many interesting, quite different, but overlapping disability communities.


Each one has a different focus, style and personality. So before you dive in, think about what you are hoping to find:

  • Opportunities for teamwork with other disabled people who share your policy concerns and disability advocacy goals.
  • Cultural enrichment and forums for expression about the experiences disabled people share.
  • Career and business opportunities that can work well for people with disabilities.
  • Advice, mentoring and disabled role models to serve as empowering examples to emulate.
  • Mutual aid and emotional support between people with disabilities, to get through difficult times and celebrate victories.
  • Friendship and socializing with other disabled people, for fun and fellowship, in a safe environment with less ableism and a greater understanding of what it means to be disabled.


Once you have a better idea of what exactly you are looking for, you can start a more thorough and deliberate search for communities that are most likely to meet your needs.


2. Explore the many different versions of “Disability Community”


There are thousands of formal organizations and informal groups to choose from. Here are a few of the most basic types of disability community to consider:


Disability policy development and activism


Join with others in developing, defending, and changing laws, policies and programs that support and serve people with disabilities.

In the U. S., you can start by exploring and teaming up with advocacy organizations like the American Association of People with Disabilities, ADAPT, ARC, and the National Council on Independent Living.


It also helps to keep up with current disability rights and policy issues by reading about and joining advocacy campaigns on Facebook and Twitter, which offer more information and interaction than most disabled people can ever get in person.


Local disability advocacy


Get involved with other disabled people in your area to advocate for local disability issues, like street and sidewalk accessibility, building code enforcement, and state funding of disability services.


Most cities, counties, and regions have local chapters of disability organizations that work on local advocacy. A good place to start is your nearest Center for Independent Living, nonprofit service and advocacy organizations governed and staffed by people with disabilities. There are CILs in every state and territory of the U. S., and many in other countries too. You can join with their advocacy efforts, and learn from your CIL what other disability organizations in your area are doing.


Disability culture


Disability culture is the sum of all creative work by people with disabilities, particularly work that focuses on and reflects disability experience. It includes disability-based journalism, cultural commentary, blogging, podcasting, vlogging on YouTube, Instagram and TikTok, books, poetry, painting, music.


You can gain a lot of insight from enjoying disability culture. You can also develop a unique and valuable voice creating your own works of disability culture. And the more disabled people participate in disability culture the richer and more empowering it becomes.


Entrepreneurship


For a variety of reasons, more disabled people than ever seem to be looking into starting and running their own companies, or doing paid freelance work.


This is partly due to persistent ableism and other barriers in traditional workplaces. On the more positive side, disabled freelancing and entrepreneurship has been unleashed by the expansion of internet tools and culture.


The disabled entrepreneurship community also includes disabled people doing solo advocacy, and those working on innovative disability-related ideas that aren’t getting enough attention from more established organizations.


Self-help and advice


Some of us are simply looking for better ways to live our best lives. There is a thriving community, especially online, of disabled people giving and looking for everyday advice on how to live successfully with disabilities, how to confront or get around physical and ableist barriers, and how to hone the skills and abilities we have and do more for ourselves.


Again, this is an example of more than just ordinary “life hack” advice. It’s a focus on specific techniques and “inside” tips from actual disabled people that may not be as credible coming from other sources, including even disability service professionals. It’s help from people you can trust because they’ve been through it before.


Lifestyle, aspiration and uplift


Nobody seems to love an “inspirational” disability story more than non-disabled people. “Feel good” disability memes and slogans are so common, sentimental and condescending that for a lot of actual disabled people, the whole genre can be nauseating.


Still, plenty of disabled people really do draw strength and hope from sharing their stories and accomplishments. At various stages of our lives and disabilities, many of us need inspiration, (or at least aspiration), and motivation to face and win through the many negatives in our lives.


It’s a difficult balance between true encouragement, and an overbearing moralism or sentimentalizing that over time can actually become off-putting or discouraging. But while conscious, deliberate positivity can often be shallow, for many disabled people it’s essential.


Disability-specific communities


Some of the oldest, most cohesive disability communities are focused on specific diagnoses or types of disability.


These include organizations and cultures of the blind and visually impaired, Deaf and hard of hearing, wheelchair users, intellectual and developmental disabilities, learning disabilities, autism, and disabled veterans – plus more specific conditions like Down Syndrome, Muscular Dystrophy, Multiple Sclerosis, and spinal cord injury.


A few decades ago, these disability-specific communities were the only way disabled people organized and interacted. Now they increasingly share focus and goals with more broadly-defined disability communities and organizations that cut across different disability categories. But they still play an important role for people who more readily identify with their own specific conditions.


Disabled friends and family


Of course you don’t always have to “join” anything to find support and community from other disabled people. One or two disabled friends or relatives can mean a whole lot.


If you really look you can find opportunities to meet other disabled people almost any day, anywhere. Any of them could be potential friends who can support you, and who you can support.


3. Adjust your expectations


Don’t expect to be fully embraced and validated right away. And don’t try to lead or radically change existing communities overnight. Take your time, and give the people you meet time to get to know you.


Shared disability experience is powerful. But keep in mind that simply having a disability isn’t always enough to win acceptance and a positive experience in every disability community. If your interests and personality are different from the group you are approaching, it may not work.

 

And if it doesn’t, it may be nobody’s fault.


If you want to talk about disability writing and poetry, don’t go into an advocacy group and tell them that advocacy is pointless and they should embrace art and expression instead.


If you want to tell everyone your long and emotionally powerful story of how you became disabled, don’t be surprised if you get a cool reception from a group of disabled people sharing practical advice or talking about disability politics.


And if you have a business idea to promote, be careful how you present it, especially in groups focused less on individual achievement and more on mutual support or collective advocacy goals.


To paraphrase John F. Kennedy, ask not what the disability community can do for you, ask what you can do for your disability community.


Finally, face-to-face encounters are healthy, and should soon become safe and feasible again. But for disabled people who have workable access to it, social media is by far the most efficient way to survey the full range of disability communities, and to connect with what interests you.

So by all means, explore, in person and online. Disability community is out there. You just have to look for it, manage your expectations, and be clear with yourself about what you are looking for.

ADAPT activists drag themselves up the U.S. Capitol steps at the

PBS To Spotlight Story Behind The ADA

By Shaun Heasley • March 19, 2025
A documentary about the decades-long fight for disability rights culminating in the passage of the Americans with Disabilities Act is set to premiere.  The film “Change, Not Charity: The Americans with Disabilities Act” follows the twists and turns of a grassroots movement that pushed Congress to mandate curb cuts, ramps and much more to allow people with disabilities access to American life. Relying on archival footage and interviews with activists, lawmakers and other key players, the one-hour film chronicles how the disability rights movement organized and took to the streets to lobby for the ADA in the face of strong opposition. Things came to a head with the “Capitol Crawl,” when people with disabilities including many wheelchair users dragged themselves up the steps of the U.S. Capitol, leading to the 1990 signing of the ADA. “I think the message of this film is that civil rights for people with disabilities are just as important as the rights that everyone either has or should have in our society,” said the film’s director, Jim LeBrecht, who has a disability and who is known for his work on “Crip Camp,” an Oscar-nominated documentary [01] about the origins of the disability rights movement. “There was a coming together of many people, disabled and non-disabled people. Legislators from both sides of the aisle came together in a bipartisan fashion,” he said, referring to the ADA. “I hope that our film will remind our viewers and those in power, that preserving the civil and human rights of people with disabilities benefits everyone.” Narrated by actor Peter Dinklage, “Change, Not Charity: The Americans with Disabilities Act” will air on PBS March 25 at 9 p.m. ET on “American Experience.” Citations: IMDB Webpage for Crip Camp: https://www.imdb.com/title/tt8923484 Original Article: [ARTICLE] PBS To Spotlight Story Behind The ADA: https://www.disabilityscoop.com
Gov. Wes Moore (D) during a hearing last month.(Photo by Bryan P. Sears/Maryland Matters)

Governor’s supplemental budget helps fund disabilities agency by cutting other programs

By Danielle J. Brown • March 6, 2025
Paid family leave, energy projects, and state employee wages taking a hit as DDA, other programs gain in latest spending plan.
Image from https://www.ridehirta.com/invisibledisabilities

Local News Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs

By JT Moodee Lockman • February 10, 2025
BALTIMORE -- A proposed bill in Maryland would allow residents to disclose "nonapparent disabilities" on their driver's licenses or identification cards. Eric's ID Law, or HB707, [01] would require the Motor Vehicle Administration (MVA) to add a certain symbol to licenses, ID cards or moped permits indicating that the applicant has a nonapparent disability. The idea was proposed by a Maryland family during an appearance on ABC's "The View," The Baltimore Banner reported. [02] The Carpenter-Grantham family had the idea after the 2020 murder of George Floyd [03] which sparked protests across the nation. "I realized that I have an African American son with an invisible disability," mother Linda Carpenter-Grantham said during the TV appearance. The bill was introduced in the state Senate during the 2024 legislative session but missed a deadline in the House. The proposed bill would require the MVA to establish public outreach programs to educate the public about the new symbols or notations. The MVA would work with disability advocates to design the symbols. The MVA would be prohibited from sharing information about an applicant's disabilities. The bill would also prevent the MVA from asking an applicant to provide proof of their disability or reject an application because the listed disability does not match other documents associated with the applicant. Under the bill, the Maryland Police Training and Standards Commission and Department of State Police would have to immediately implement training for police interactions with those who have nonapparent disabilities noted on their IDs. The bill will be the subject of a hearing on Feb. 13 at 1 p.m. What is a nonapparent disability? According to the proposed bill, a nonapparent disability is a health condition that is not immediately obvious or visible, this could include developmental or intellectual disabilities. According to a study by the National Institutes of Health (NIH), [04] common nonapparent disabilities are anxiety and depression, Alzheimer's, deafness, post-traumatic stress disorder (PTSD), attention-deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), and diabetes among others. People with developmental disabilities are about seven times more likely to encounter law enforcement than neurotypical individuals, according to a 2001 study by the Department of Justice. [05] Citations: [WEBSITE] Legislation: Eric's ID Law , or HB707: https://tinyurl.com/4r5s8ntp [ARTICLE] Maryland mom and her autistic son pitch a disability safety bill on ABC’s ‘The View’: https://tinyurl.com/4nzukspm [ARTICLE] George Floyd's death sparks large protests, confrontations with police: https://tinyurl.com/263hk9sk [STUDY] Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations: https://tinyurl.com/bdexd9js [ABSTRACT] Contact with Individuals with Autism: Effective Resolutions: https://tinyurl.com/56d6yd44 [ORIGINAL ARTICLE] Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs: https://tinyurl.com/9k7z6nyh 
Advocates and members of the developmental disability community rallied Monday to demand legislators

‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring

By Konner Metz • February 7, 2025
Advocates and service providers on the Eastern Shore are joining Maryland’s disability community to call for rollbacks on projected cuts to funding for developmental disability services. Scott Evans, executive director of the Benedictine School in Ridgely, said the near $200 million in cuts to Developmental Disabilities Administration funding outlined in Gov. Wes Moore’s proposed budget would be the worst he’s seen in his 25-year career. “Bottom line, these proposed cuts of close to $200 million in state funds would be catastrophic to the community service providers, as well as the people we support and our employees,” Evans said. “It would literally set us back years in funding.” The proposed cuts come as the state faces a near $3 billion deficit. Some advocates from the Eastern Shore note they could reduce the choices available for families and people with disabilities. Jonathon Rondeau, president and CEO of The Arc Central Chesapeake Region, says families and people with developmental disabilities on the Eastern Shore already have a limited number of options. “There are less agencies providing services for people with disabilities on the Shore,” Rondeau said. “So if there is instability in the system, it can potentially reduce choice for people with disabilities.” Evans echoed the same sentiment, and added that the cuts could hurt Benedictine’s ability to stay competitive when hiring employees. In recent years, the nonprofit school and service provider has raised wages in an attempt to attract quality employees. “All that has been an investment we’ve made because of the funding that we have received,” Evans said. “Now to wipe that funding out basically overnight means that we’re stuck in a holding pattern.” THE CUTS In Moore’s budget proposal, his office notes that in addition to the $1.3 billion set for the Developmental Disabilities Administration in fiscal year 2026, the state will “better leverage federal funding and align Maryland’s program more closely with federal guidance and practices across other states.” Evans says it’s not clear how DDA would implement the cuts, though his team at Benedictine team is working to crunch the numbers. Evans said it would cost the school hundreds of thousands of dollars of funding at the very least. Specific cuts that worry advocates include reductions in “dedicated hours” funding for those in community living programs, as well as a $14.5 million blow to self-directed services funding. “Someone who is in their late 60s and retired and chooses to stay home every day rather than going to a day program won’t necessarily have that choice anymore,” Rondeau said regarding the dedicated hours cuts. “There won’t be the funding available for that. It’ll be difficult for providers such as The Arc to support someone who may have significant health issues and need to go to the doctors.” Karenna Jones of Salisbury worries that cuts to self-directed services will impact the ability for her family to take care of her 26-year-old son, Kenneth, who has a traumatic brain injury and lives at home. Jones says as long as she lives, she “would never put (her) kid in a provider home.” But large cuts in funding may leave her with no choice. “We might be forced to do that,” Jones said. “It’s not fair.” RALLY IN ANNAPOLIS With the uncertainty swirling, hundreds packed Lawyers Mall in Annapolis Monday night, protesting for legislators to reject the proposed cuts. Leaders at the Benedictine School and The Arc Central Chesapeake Region attended, as did Jones. “I’m always amazed at how quickly the folks within the disability community can rally around a cause, and a cause that means so much to them,” Evans said. “And also, to some extent, the positive response we’ve gotten from legislators about these cuts.” Jones said the rally — organized with just three days notice by a developmental disability coalition — was inspiring and beautiful. “We were saying, ‘Save our DDA services. Save it. Don’t leave us behind,’” Jones said. Citations : [ORIGINAL ARTICLE] ‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring: https://tinyurl.com/5ahffbu8
Advocates for people with developmental disabilities rallied at the State House Monday night in oppo

Hundreds of developmental disability advocates rally against proposed state budget cuts

By Danielle J. Brown • February 5, 2025
State Sen. Craig J. Zucker (D-Montgomery), who has a son with autism, promises to be community's ally.
Robert F. Kennedy Jr. testifies before the U.S. Senate Committee on Finance concerning his nominatio

Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances

By Michelle Diament • February 5, 2025
Despite concerns about his history promoting a debunked link between autism and vaccines, a key U.S. Senate panel advanced Robert F. Kennedy Jr.’s nomination to become the nation’s health secretary. The Senate Finance Committee voted 14 to 13 this week along party lines to send Kennedy’s nomination to the full Senate, which will have final say over whether he will take over the Department of Health and Human Services. The vote came after Sen. Bill Cassidy, R-La., said he would back Kennedy despite expressing reservations just days earlier over his anti-vaccine past. Kennedy has spent years blaming the increase in autism prevalence on childhood vaccinations. During confirmation hearings last week, Cassidy, a medical doctor, unsuccessfully pressured [01] Kennedy to concede that there is no link between autism and vaccines. But, Cassidy said he ultimately decided to back Kennedy after receiving “serious commitments” from the Trump administration. Specifically, Cassidy indicated that he’s been assured that the Centers for Disease Control and Prevention will not remove statements on its website highlighting that vaccines do not cause autism. Kennedy also committed to “work within current vaccine approval and safety monitoring systems and not establish parallel systems” and “maintain the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommendations without changes,” Cassidy said. While Kennedy’s nomination is not guaranteed, Cassidy had been viewed as a significant question mark and his support will ease the path to full Senate confirmation. President Donald Trump has said [02] that he’s “open to anything” when it comes to investigating the increase in autism prevalence in recent decades and he’s suggested that Kennedy would have leeway to look into the causes of autism including the long-discredited connection between autism and vaccines. “20 years ago, Autism in children was 1 in 10,000. NOW IT’S 1 in 34. WOW! Something’s really wrong. We need BOBBY!!! Thank You! DJT,” Trump posted to social media just before the Senate committee met to vote this week. In fact, the latest CDC estimates suggest 1 in 36 children [03] have autism compared to 1 in 150 in 2000. Kennedy’s nomination is raising concerns for several national autism and disability organizations. A dozen groups including the Autism Society of America, the Autistic Self Advocacy Network, the National Association of Councils on Developmental Disabilities and The Arc of the United States put out a statement ahead of Kennedy’s confirmation hearings saying that vaccines do not cause autism. “Perpetuating myths linking vaccines to autism does a disservice to the autism community by distracting from their pressing healthcare needs,” the groups said. Instead, the organizations indicated that policymakers should focus on actual needs in the autism community such as access to health care, mental health services, education and more. “The Autism Society is still very disturbed that Mr. Kennedy has not clearly stated that vaccines are not linked to autism,” Christopher Banks, president and CEO of the Autism Society of America, said after Kennedy’s nomination advanced. “Any direction to reinvestigate debunked myths, will reverse progress, and deter funding that addresses healthcare inequities and services that the autism community needs now.” Citations: [ARTICLE] HH S Nominee RFK Jr. declines to reject vaccine autism link: https://tinyurl.com/mkfpb32s [ARTICLE] Trump signals his administration will investigate debunked link between vaccines and autism: https://tinyurl.com/334jkspd [ARTICLE] Autism now affects 1 in 36 kids CDC says: https://tinyurl.com/3m5hve86 [ORIGINAL ARTICLE] Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances: https://tinyurl.com/jmephrju
rom left, Laura Howell, CEO of Maryland Association of Community Services; Ande Kolp, executive dire

Advocates ask to be ‘at the table’ amid talks of budget cuts to disability agency

By Danielle J. Brown • January 27, 2025
Despite some conversations between state officials and the disability community, advocates say they’re not being heard.
A public service announcement from Autism Speaks offers information about the signs of autism. (Ad C

Autism Affects More Than 60 Million Worldwide, Study Finds

By Shaun Heasley • January 15, 2025
New estimates show that 61.8 million people around the globe have autism and that the developmental disability is among the most common health issues facing youth. As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published [01] recently in the journal The Lancet. Autism was twice as likely to affect males versus females and there was high prevalence among young people, with the condition ranking in the top 10 causes of non-fatal health burden for those under age 20, the study found. The findings are based on a review of studies and data that was conducted as part of the Global Burden of Diseases 2021 Study, which is considered the largest scientific effort to measure the prevalence and impact of various conditions. The autism rate identified in the new study “substantially changed estimates” from the last version of the report in 2019, but the researchers attributed the increase to updates in their methodology, in particular excluding studies that were likely to undercount prevalence. Researchers identified variances in prevalence by geography with autism affecting 1 in 163 people in tropical Latin America versus 1 in 65 people in the higher-income Asia Pacific region. “There are many factors contributing to this wide range, including varying exposures to risk factors, cultural variation, behavioral norms, or screening tools and diagnostic tools being used in those locations, and also how people are responding to these surveys, or whether they even choose to respond or participate in the survey in the first place,” said Dr. Damian Santomauro, an affiliate assistant professor at the Institute for Health Metrics and Evaluation at the University of Washington who led the study. “Work is currently ongoing to explore ways to quantify and correct for these differences so we can paint the most accurate picture of the prevalence of autism globally.” The latest estimates from the Centers for Disease Control and Prevention [02] indicate that 1 in 36 American children are on the autism spectrum. That figure is based on data collected on 8-year-olds in 2020. By contrast the rate was 1 in 150 in 2000. Experts attribute the rise in diagnosis to greater awareness of the developmental disorder. Those behind the new study say they hope their findings will prompt better policies and greater supports for individuals with autism around the world. “The prevalence and health burden of autism persisted across the lifespan,” Santomauro said. “These findings highlight the need for early detection and lifelong supportive services for autistic individuals.” Citations: [ARTICLE] The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021: https://tinyurl.com/4xwk9ebm [ARTICLE] Autism now affects 1 in 36 kids, CDC says: https://tinyurl.com/3m5hve86  [ORIGINAL ARTICLE] Autism Affects More Than 60 Million Worldwide, Study Finds: https://tinyurl.com/24fz2bs3

Investing in community providers is key to brighter future for those with disabilities

By Karen Lee • January 2, 2025
The infrastructure to train and keep direct service providers for those with intellectual and developmental disabilities has been neglected, resulting in a crisis that must be addressed, writes Karen Lee. Photo by Getty Images.
Walmart is offering customers with disabilities the option to get assistance from a visual interpret

Walmart Enhancing Accessibility For Shoppers With Disabilities

By Michelle Diament • December 16, 2024
The nation’s largest retailer is piloting a new program aimed at enabling people with disabilities to shop more independently. Walmart is providing free access to visual interpreters at its stores and on its website. The company is partnering with Aira, a third-party service, to connect customers with sighted interpreters who can relay detailed information in real time about their surroundings, help them navigate or read signage, labels and more. To use the service, individuals stream live video of their surroundings through the Aira mobile phone app. Visual interpreters are trained to offer objective feedback so that users can make independent choices, Walmart said. And, since the retailer is offering complementary access to the service, company officials said that customers will be able to take as long as they need to wade through their options. Gayatri Agnew, head of Walmart’s Accessibility Center of Excellence, said that offering access to Aira is just the company’s latest move to improve the shopping experience for people with disabilities. She cited the recent addition of sensory-friendly shopping hours, making Caroline’s Cart available at every store and expanding Walmart’s adaptive product lines. “The reality is, we have tons of shoppers with disabilities who we want to make sure are having as good, if not better, of a shopping experience with us as someone who doesn’t have a disability,” Gayatri said. 
Show More