Disability Pride Month takes place each year in July. I follow a lot of other accessibility professionals and disability activists and either learn a lot or experience validation (or both) from their posts, especially during the month of July. One post I came across recently really had me nodding my head. Celia Chartres-Aris and Jamie Shields reached out to disabled people around the world for ‘The BigAbleism Survey.’ They asked participants how they really felt about ableism, how ableism affected them, how they dealt with internalized ableism and more.
95% of disabled people have experienced ableism
99% of disabled people believe that non-disabled people need more training and education on Ableism.
Only 1.5% of disabled people have never experienced internalized ableism.
Only 6.6% of disabled people have never experienced mental health challenges as a direct result of their disability.
To enable wheelchair users to celebrate the positive impact a wheelchair has in their lives so that they can access employment, participate in the community, get involved in social activities and more.
To celebrate the great work of millions of people who provide wheelchairs, who provide support and care for wheelchair users and who make the world a better and more accessible place for people with mobility issues.
To acknowledge and react constructively to the fact there are many tens of millions of people in the world who need a wheelchair, but are unable to acquire one.
Progress
In 2023, many wheelchair users took to social media. They expressed the impact their mobility devices have on their freedom and quality of life. Here are 10 of their reflections. Last year I was also introduced to a cool company called Izzy Wheels. Founded by two sisters who creates cool wheelchair covers so that wheelchair users can customize their look.
In the past, I’ve also posted about off-road wheelchairs being made available in public parks. From those in my own state of Minnesota, to the beaches of Oregon and beyond. Unfortunately wheelchair users still face many frustrations. Especially when traveling by air.
Problems
Last Fall, a video went viral of an American Airlines baggage handler. Showing a passenger’s wheelchair sliding down a jet bridge chute. It crashed into a metal barrier, flipped over and tumbled onto an airport tarmac.” Sadly, this is not an uncommon occurrence.
In 2022, the 10 largest U.S. airlines lost, damaged or destroyed more than 11,000 wheelchairs and scooters, according to the Department of Transportation. That represents 1.5% of all wheelchairs and scooters boarded onto planes.
When an airline damages, loses, or delays a passenger’s wheelchair, it is a significant problem. It endangers that person’s health and can seriously limit their mobility and independence. Just last month, U.S. Transportation Secretary Pete Buttigieg announced a new proposed rule from the U.S. Department of Transportation (DOT) that would ensure airline passengers who use wheelchairs can travel safely and with dignity. This proposed rule would be the biggest expansion of rights for passengers who use wheelchairs in the United States since 2008.
Potential Solutions
The proposed rule would take major actions in three key areas:
Penalties and remedies for wheelchair mishandling
Safe, dignified, and prompt assistance
Improved standards on planes
It’s unclear if this was prompted by Senator Duckworth’s MOBILE Act from 2023. Whatever the case may be, I hope for an outcome that will lead to more accountability and accessibility for travelers with disabilities.
When bioethicist and professor Ashley Shew became a self-described “hard-of-hearing chemobrained amputee with Crohn’s disease and tinnitus,” there was no returning to “normal.” Suddenly well-meaning people called her an “inspiration” while grocery shopping or viewed her as a needy recipient of technological wizardry. Most disabled people don’t want what the abled assume they want—nor are they generally asked. Almost everyone will experience disability at some point in their lives, yet the abled persistently frame disability as an individual’s problem rather than a social one.
Skipping back to October, a couple of significant things occurred. After years of wondering, I was formally diagnosed with autism and ADHD. On the same day I had my final session with my fantastic clinician, a book I pre-ordered arrived. And, in the most ADHD move ever, another copy of the same book showed up the next day. Apparently, I’d pre-ordered it two days in a row without realizing it. That book was Unmasked: The Ultimate Guide to ADHD, Autism and Neurodivergence by Ellie Middleton. Thankfully, I was able to give the second copy to a friend who has been pondering her own neurodivergence.
“Learning the way my brain works has changed everything for me,” she says, and describes herself as almost being a poster girl for what can happen when you get the answers you need.
Today is International Day of Persons with Disabilities (IDPD); a United Nations day that is celebrated every year on the 3rd of December. The theme for 2023 is ‘United in action to rescue and achieve the sustainable development goals for, with and by persons with disabilities.’
Given the multiple crises we are facing today, the world is not on track to reach numerous Sustainable Development Goals (SDGs) targets by 2030. Preliminary findings from the forthcoming UN Disability and Development Report 2023 indicate that the world is even more off-track in meeting several SDGs for persons with disabilities.
Our efforts to rescue the SDGs for, with, and by persons with disabilities, need to be intensified and accelerated, given that persons with disabilities have historically been marginalized and have often been among those left furthest behind.
A fundamental shift in commitment, solidarity, financing and action is critical. Encouragingly, with the adoption of the Political Declaration of the recent SDG Summit, world leaders have recommitted themselves to achieving sustainable development and shared prosperity for all, by focusing on policies and actions that target the poorest and most vulnerable, including persons with disabilities.
Provide two modern communication options always. Online and in person.
Avoid assumptions and ask. Meryl’s example: Getting me an ASL interpreter without asking will deprive someone else who needs the interpreter. There’s a shortage of interpreters. Let’s make sure the right people have access to them.
Understand one person does not represent an entire disability category.
Involve people with disabilities from start to finish and beyond. Pay them for their time. Turning off the sound does not mimic the experience of a person who depends on captioning every day. Refer to No. 4 as companies and product development often make assumptions.
Hire qualified people with disabilities. Data shows that people with disabilities tend to be the most loyal and best workers who bring in more revenue for companies who hire them. The hiring process needs to change.
Make progress with accessibility every day. It can be small steps like adding alternative text (image descriptions) to images. Make captions part of your video creation process.
Skip using overlays on your website to fix accessibility. This isn’t making progress. It’s a step backward.
Avoid hiring speakers who know little about accessibility and disabilities. Some people with disabilities aren’t qualified to speak on these topics.
Ensure XR, virtual reality, and augmented reality are accessible.
National Disability Employment Awareness Month just ended, but it’s on my mind all year long. I’m making this post in the hope that it will help someone else. Or help some folks better understand me and my non-apparent disabilities.
Misophonia
The most recent episode of The Allusionist podcast hits home for me. It tackles two topics I identify with: misophonia and alexithymia. I’ve always been more sensitive to sensory input (sounds, scents, visuals – especially flashing lights and shaky cam). Over a decade ago I made the connection with misophonia for my auditory issues. All the pieces are falling into place now that I’ve finally been diagnosed with both autism and ADHD. If I ever snapped at you or seemed preoccupied during a meal, or when you were maybe drumming on the back of the car seat I was sitting in (hello my musician friends), this is why.
being over-responsive to sensory information, more tuned into sensory information, and more likely to apply meaning or context to sensory information, and that is really a very common feature in both autism and ADHD and therefore it predisposes that person to develop misophonia
I’ve particularly struggled with the sounds of other people eating. I lived with one partner who clanged cutlery against his teeth and it absolutely enraged me, which made me feel awful. Then I worked for a company that had a cafeteria and expected employees to sit together to eat lunch. The acoustics and lighting in the space were so overwhelming it nearly brought me to tears. I opted to take a daily lunch walk instead and quickly eat at my desk afterward. I’ve developed these coping methods over the years. Avoidance or noise canceling headphones are my main tools.
Alexithymia
Alexithymia is the thing I don’t have a handle on yet. I remember being frustrated when a therapist would ask me to describe my feelings or where in my body I felt them. I have no idea. But now I know *why* I have no idea.
“Alexithymia is a neuropsychological phenomenon characterized by significant challenges in recognizing, expressing, and describing one’s own emotions. It is associated with difficulties in attachment and interpersonal relations. While there is no scientific consensus on its classification as a personality trait, medical symptom, or mental disorder, alexithymia is highly prevalent among individuals with autism spectrum disorder (ASD), ranging from 50% to 85% of prevalence.”
The Book
This book contains everything I wish I’d known when I was a teenager, hiding a giant whirring walkman in the pocket of my school uniform so that I could block out the sounds of my classmates clicking through all the colours in their four-pens. It’s not just coping strategies (although there are plenty of those), it’s also full of ideas to help your brain make new associations with sounds, which brings down the intensity of your reactions. I cover some of the exciting research that’s happening in the world of misophonia, connect you with your inner miso child, help you deal with big emotions and embrace the meerkat within. Adeel Ahmad shares stories from our volunteers who worked through the book while it was being written. There are several out-of-date pop culture references, and you’ll be happy to hear that my editors and early readers very firmly encouraged me to remove the rest of them.
Somehow it’s already November. But every October, it is National Disability Employment Awareness Month (NDEAM). This celebrates the contributions of America’s workers with disabilities. And showcases supportive, inclusive employment policies and practices that benefit employers and employees. The Office of Disability Employment Policy (ODEP) chose “Advancing Access and Equity” as the theme for NDEAM 2023.
I shared these resources within my company at our monthly Accessibility Community of Practice meeting:
I also shared the good news that civil rights litigator Karla Gilbride was sworn at the U.S. Equal Employment Opportunity Commission. The role was vacant as she waited a year and a half to be confirmed. She will lead the EEOC’s critical litigation efforts on behalf of workers accusing their employers of discrimination based on race, sex, age, disability, and other characters. Gilbride is blind and the first person with a known disability in the role of general counsel at the EEOC. This is in line with our “Nothing About Us Without Us” motto and I’m glad of it.
Some of you may know about Pennsylvania senate candidate John Fetterman, who experienced a stroke in May of 2022. This left him with some auditory processing challenges. He is now making us of assistive technologies like closed captioning. Despite your political beliefs, his public use of AT should be celebrated for a number of reasons. He’s helping to normalize and destigmatize temporary and permanent disabilities. His willingness to use common assistive technologies in his personal and professional life shows he is adaptable and can troubleshoot. Unfortunately, this has led to some awful ableist attacks.
The lines of attack used against Fetterman, many of which are ableist (meaning they convey prejudice, either overt or subtle, against people with disabilities), tap into long-standing stereotypes about people with disabilities and could affect voters’ perceptions of him. That’s because there continues to be stigma against people with disabilities, according to Lisa Schur, a co-director of the Rutgers Program for Disability Research. As a result, she said, political “candidates with disabilities have to work extra hard to ensure voters that, yes, I’m competent and capable of doing the job.” This stigma can be particularly intense for candidates with mental or cognitive disabilities — or even for candidates where questions are raised about their cognitive function.
This is all upsetting enough, but particularly jarring as October is National Disability Employment Awareness Month:
Observed annually in October, National Disability Employment Awareness Month (NDEAM) celebrates the contributions of America’s workers with disabilities past and present and showcases supportive, inclusive employment policies and practices. In recognition of the important role people with disabilities play in a diverse and inclusive American workforce, the theme for NDEAM 2022 Disability: Part of the Equity Equation.
But it’s not all bad news. Teen Vogue put out an excellent op-ed about how ableism bars people with disabilities from seeking — or winning — elected office. While discouraging, they describe some gains:
Despite systemic inaccessibility and ableism in electoral politics, the disability community continues to gain mainstream attention around its political participation through organizing and movements like #CripTheVote. As these movements have grown, disabled candidates and elected officials are being more open about their disabilities and we have seen a number of historic firsts: the first full-time wheelchair users serving in Colorado and Arizona, the first appointed and elected Deaf mayors, and some of the first openly autistic state legislators.
Meanwhile, some cool programs are popping up around the country:
Ablr Works is the workforce development arm of LCI, one of the largest employers of Americans who are blind or visually impaired with headquarters in Durham. It has teamed up with the North Carolina Department of Health and Human Services’ Division of Services for the Blind (DSB) to kick off the statewide initiative this month. The benefits are twofold: It will make websites and digital content more accessible, as well as reduce the high unemployment rate among people with disabilities, the company said.
And last but not least, disabled people were among the hardest hit by pandemic-related job losses, but the rise in remote work also created new opportunities.
Recent employment figures indicate that disabled people have, in fact, gained a stronger foothold in the workforce, likely due to the popularity of remote work. According to the Bureau of Labor Statistics, the number of disabled workers ages 16 to 64 who are employed was well over 5.5 million during the summer months; as of September, that figure had crossed 5.8 million, accounting for nearly 4% of workers overall. The labor force participation rate rose to 38% in September, up from 37.6% in August, a year-over-year increase from 36.4% in September 2021.
Writer, disability-justice activist and performance artist Leah Lakshmi Piepzna-Samarasinha knows that it’s possible for society to become more equitable. They envision a future in which “people are free to be, regardless of their ability to fit into capitalist institutions.”
I’m excited by the work of activists like Leah Lakshmi Piepzna-Samarasinha. And their latest book that “lays out a bare-bones agenda for what is needed to make the U.S. more socially just: affordable, available and accessible housing; healthcare and pharmacare; a universal basic income for all residents; free, high-quality public education programs; and the elimination of punitive policing and incarceration.” A resounding YES PLEASE to all of it!
Unfortunately, the systems in place are resistant to change. Instead, those in power propose much smaller, incremental tweaks. For example, recently the State Department announced the finalization of their Five-year Diversity, Equity, Inclusion, and Accessibility (DEIA) Strategic Plan. Don’t get me wrong, this more intersectional approach is a step in the right direction. But it will only protect federal employees. Only 20% of people with disabilities are employed, compared to 64% of non-disabled people, according to the U.S. Bureau of Labor Statistics. That’s a huge gap. Only 4% of DEI initiatives include disability and that’s just in organizations that even have a DEI initiative. Most companies don’t have their disabled employees or customers in mind. A perfect example came from the amazing Meryl Evans. Yesterday she posted about her experience with an Apple Watch, and more.
“People with disabilities can bring a lot more to your team than what you see on their resumes.
They have an uncanny ability to come up with innovative ideas and solutions. Feeling excluded has a way of driving people with disabilities.
For instance, I never wanted an Apple Watch. I hadn’t worn a watch in years. A friend convinced me to try it. It made my life as a deaf person easier!
How? It became an accessibility tool.
It buzzes when cooked food is ready. No more overcooked food! It buzzes when someone is at the door. No more packages sitting on the porch for stealing. No more leaving my sister stranded on my doorstep when she dropped by unexpectedly.
No one advertises these benefits. Apple never marketed it that way. If they had, they may have gotten more buyers and fans.
These are examples of how someone who is different from you can innovate and come up with creative solutions.
We don’t always click when we meet someone. This isn’t because of a bad interview. We tend to click with those most like us. You’ll gain more when hiring someone different from you.
The thought of creating a more accessible hiring process feels overwhelming. Just start. How can you get started?
– Ask every candidate what accessibility they require. – Verify the online application process is accessible for keyboard-only navigation and works with screen readers.
These are starting points. Keep working on it and adding more pieces. Progress over perfection. Just start.”
Again, yes to all of these things! I’m neurodivergent and have an auditory processing disorder. I wear noise-canceling headphones a good portion of the day. The Apple Watch’s haptic feedback has made my life so much easier too. And I want that for others. There’s so much we could do, as a society, to improve the quality of life for our fellow humans. But the pace of change is moving too slowly. More people are being forced to survive with less…while profit margins are on the rise for those at the top. We could all be thriving instead.
The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990. This was decades in the making. For those unfamiliar with the history, one great starting point is the 2020 documentary Crip Camp: A Disability Revolution. Growing up, I didn’t have any summer camp experiences (we were too poor). But I sent my son to a summer camp with an autism inclusion program. He wouldn’t have been able to attend otherwise. This program was in place thanks to the work of those who came before us. Disability Pride Month has been celebrated in July since 1990, along with the ADA victory. The disabled community isn’t a monolith. But members come together to support one another. Disability justice movements advocate for intersectional approaches to meet the needs of people with disabilities. The “nothing about us without us” mantra was born from this movement, expressing the conviction of people with disabilities that we know what is best for us.
Disability Pride Month looks to celebrate disability as an identity by sharing the experiences of the disabled community. The reason behind the month is a chance to share the joy and pride that disabled people can bring to their local and global communities. The disabled community is a vibrant part of society and makes up 15% of the population, and we are proud of that.
One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.
From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
And Alice Wong is at it, again. This time with a memoir! I’ve pre-ordered my copy from my favorite local bookstore, Moon Palace. You can support local bookstores too!
This groundbreaking memoir offers a glimpse into an activist’s journey to finding and cultivating community and the continued fight for disability justice, from the founder and director of the Disability Visibility Project
In Chinese culture, the tiger is deeply revered for its confidence, passion, ambition, and ferocity. That same fighting spirit resides in Alice Wong.
Drawing on a collection of original essays, previously published work, conversations, graphics, photos, commissioned art by disabled and Asian American artists, and more, Alice uses her unique talent to share an impressionistic scrapbook of her life as an Asian American disabled activist, community organizer, media maker, and dreamer. From her love of food and pop culture to her unwavering commitment to dismantling systemic ableism, Alice shares her thoughts on creativity, access, power, care, the pandemic, mortality, and the future. As a self-described disabled oracle, Alice traces her origins, tells her story, and creates a space for disabled people to be in conversation with one another and the world. Filled with incisive wit, joy, and rage, Wong’s Year of the Tiger will galvanize readers with big cat energy.
Growing up in the 70s and 80s, my childhood was chock full of microaggressions and microinvalidations. At school and at home. Most often related to my ethnicity, gender, intelligence, physical appearance, etc. Some classmates called me “Qaddafi’s daughter” for years, despite my family coming from a completely different country — Lebanon — a continent away from Libya. Often there were outright slurs too. Directed at me, but also bandied about so casually in day-to-day life and in pop culture. It’s appalling. I cringe when I attempt to rewatch many movies and television shows from my youth. We have come a long way but there is still so much work to do. We can and should strive to learn and grow. Which Lizzo has done recently and done well.
Following criticism that her new single, “Grrrls,” included the word spaz, Lizzo announced on Monday that she has released another version of the track with the offending lyric removed. “It’s been brought to my attention that there is a harmful word in my new song,” Lizzo wrote in a statement accompanying the rerelease. “Let me make one thing clear: I never want to promote derogatory language. As a fat black woman in America, I’ve had many hurtful words used against me so I overstand the power words can have (whether intentionally or in my case, unintentionally).”
When situations like this come up, as they often do, I share one of my favorite resources.
What is self-defined?
A modern dictionary about us. We define our words, but they don’t define us.
Self-Defined seeks to provide more inclusive, holistic, and fluid definitions to reflect the diverse perspectives of the modern world.
With the foundation of vocabulary, we can begin to understand lived experiences of people different than us. Words can provide us with a sense of identity and allow us to find kinship through common experiences.
Unfortunately, ableism continues to go unaddressed in too many diversity initiatives. Kelsey Lindell has some excellent suggestions on how to avoid situations like these in the future:
