Despite the grim state of things in the US, it is still Disability Pride Month. And I have multiple non-apparent disabilities: Endometriosis, migraines, occipital neuralgia, misophonia, autism + ADHD (sometimes shortened to AuDHD). One aspect that is less commonly discussed is proprioception.
Proprioception
My understanding of proprioception began when my son was diagnosed with autism. It is one of many factors that motivated me to pursue an autism assessment for myself. Proprioception, often referred to as the body’s “sixth sense,” is awareness of one’s body position and movement in space. It encompasses sensations such as muscle contraction and stretching, as well as deep pressure or squeezing.
My son tends to be under-responsive to proprioceptive stimuli, while I experience hypersensitivity: “Individuals who are oversensitive to proprioception may have difficulty comprehending where their body is relative to other objects.”
After I went to the gym last night, I fumbled my giant container of protein shake powder and spilled it all over the floor. This morning I knocked my coffee mug over. I often find my phone and other objects slipping from my hands. This clumsiness can be a nuisance. But I’ve also dropped vital prescription medication while trying to take it and even fumbled entire bottles of prescription meds.
Other aspects of hypersensitivity can be more difficult
Increased pain perception. While some autistic people may exhibit a higher tolerance for certain types of pain, many experience heightened pain sensitivity and may feel pain more intensely than others. This can manifest as a lower pain threshold or a prolonged experience of pain, even from stimuli that might others might find tolerable.
Heightened tactile sensitivity. Autistic people may experience heightened sensitivity to touch, pressure, and movement. This can lead to increased awareness of physical contact and, in some cases, discomfort or pain from specific textures of clothing or being jostled in crowds. Crowds are particularly tough for me due to my height (barely five feet tall).
Increased sensitivity to certain sounds. Sounds might seem louder to an autistic person, which might make them react to sounds more strongly. This is where my misophonia comes into play, personally.
Working with my neurologist, a physical therapist, and a personal trainer have helped manage these sensitivities to some extent but not everyone has access to these resources. Family members, friends, coworkers, and classmates have teased me about my clumsiness. I encourage others to consider the impact before commenting on someone else’s clumsiness or sensitivities.
International Wheelchair Day is observed every March 1st. I am interested in physical accessibility as much as digital accessibility, but especially the point where the two meet. Where technology can improve physical accessibility by removing barriers or at least warn folks about them. Recently, I came across an older project that came out of “Random Hacks of Kindness” in Berlin called Broken Lifts.
Broken elevators at train stations are a big problem for people who rely on wheelchairs and walking aids, but also for families with strollers. That’s why it’s important to find out about breakdowns in good time. Of course, complex machines like elevators can occasionally break down. Vandalism does the rest. For this reason, BrokenLifts was created – a project by the SOZIALHELDEN association and the Berlin-Brandenburg transport association in collaboration with the HENKELHIEDL project office for the automated visualization of elevator breakdowns in local public transport in Berlin. The elevator malfunction information from the Berlin S-Bahn and the BVG is retrieved, analyzed and bundled every 15 minutes as a database.
The same folks who came up with Broken Lifts are behind wheelmap.org, a map for finding wheelchair accessible places. Anyone can contribute and mark public places around the world according to their wheelchair accessibility.
Google
Of course, there’s a bigger player on the scene. In 2020, Google Maps launched a mode called Accessible Places. When toggled on, it more prominently shows wheelchair accessibility info.
“When Accessible Places is switched on, a wheelchair icon will indicate an accessible entrance and you’ll be able to see if a place has accessible seating, restrooms or parking,” Google explains in a blog post. “If it’s confirmed that a place does not have an accessible entrance, we’ll show that information on Maps as well.”
Updated Live View experiences for users who are blind
A new identity attribute label for disabled-owned businesses
“It’s a basic human right to enter a place like anybody else,” says Sasha Blair-Goldensohn. This simple ideal can seem maddeningly out of reach for wheelchair users in America’s largest and most expensive metropolis. But for Blair-Goldensohn, a 48-year-old software engineer and United Spinal member from New York City, it’s the driving force of his life.
Though his work at Google touched on its Maps technology, Sasha Blair-Goldensohn wasn’t thinking much about the actual route-finding features — how people get from A to B. That changed one morning while he was walking through Central Park to catch the subway and a 100-pound tree limb fell on him. The limb fractured his skull and he sustained a T5 spinal cord injury.
New York City has one of the best subway systems in the U.S., but only if you can navigate stairs. Blair-Goldensohn’s Manhattan commute was hampered by the Metropolitan Transportation Authority system. More than 30 years after passage of the Americans with Disabilities Act, it still lacked wheelchair access in nearly 75% of commuter train stations.
Advocacy
Sasha Blair-Goldensohn stepped up his advocacy by working with legal nonprofit Disability Rights Advocates to bring a class action lawsuit. Blair-Goldensohn served as one of the plaintiffs alleging violations of the New York City Human Rights Law due to the subway system’s inaccessibility. It took six years, but in April 2023, a judge approved a final settlement compelling the Metropolitan Transportation Authority to budget for and “add elevators or ramps to create a stair-free path of travel [in] at least 95% of the system’s currently inaccessible subway stations by 2055.”
Subway elevators were frequently broken down, further limiting mobility and inclusion. “You are either stuck on the inside or the outside,” he says. “In one situation, at least you are on the surface, but you realize there’s no way home because the elevator is shut down for who knows how long. In the other situation, you are several flights of stairs down and you have to rely on strangers to carry you out.”
Sasha Blair-Goldensohn
Accessibility + Technology
For accessibility information to be helpful, it needs to be comprehensive and widely available. Collecting all the information needed to create a useful accessibility map is a big task. Fortunately, a software engineer at Google, which has the most popular free mapping app in the world with over a billion users each month, has become a strong advocate for accessibility. When Blair-Goldensohn returned to his job after his injury, it quickly became clear that his skills and understanding of what people with disabilities need made him a perfect fit for this work.
Since then, he has been working to improve the accessibility information available on Google Maps. In 2017, Google introduced a feature that lets users add details about the accessibility of places they visit. Now, Maps can show if a location has a wheelchair-accessible entrance, marked by the ♿ icon, as well as accessible seating, restrooms, and parking. In 2018, Blair-Goldensohn led a project to display wheelchair-accessible routes for public transportation.
Google Maps depends on its users to share information about various features, from what businesses offer to travel times and directions. Before last summer’s Paralympics, Blair-Goldensohn’s team met with Paralympic athletes to inform them about the accessibility features on Google Maps and to gather their experiences using the service while traveling abroad.
For Blair-Goldensohn, whose work revolves around universal design, it’s hard to understand why you would do things any other way. To him, working toward a world that can be accessed by everyone, benefits everyone. “Solidarity is powerful,” he says. Agreed!
One of the best parts of my job is curating our monthly Accessibility Community of Practice meetings. I like to tie into monthly awareness campaigns. For January, I highlighted World Braille Day and Braille Literacy Month. But then jumped into some particulars. Like sharing a video from one of my favorite folks, Anthony Ferraro, a blind athlete, musician, motivational speaker, and podcaster. His catchphrases are “the only disability is a bad attitude” and “one love.”
Some fun podcasts
Talk Description to Me podcast
Where the visuals of current events and the world around us get hashed out in description-rich conversations. J.J. Hunt is an innovative Audio Describer and a natural-born storyteller. Christine Malec is a perpetually inquisitive member of the blind and partially sighted community who’s always wondering about something.
In Talk Description to Me, their discussions plunge into current events and topical issues to explore the content of important images and help place vivid descriptions in their cultural context. Lively, hard-hitting, witty, vibrant, and fun, this is conversation with a view!
Say My Meme is exactly what it sounds like: A podcast that literally describes the world’s most relevant memes, bringing the blind and sighted people together through laughter and the power of visual description. Brought to you by Will from Be My Eyes and Caroline from Scribely.
Blind beauty expert and journalist Lucy Edwards recently sent in a request to Say My Meme, for beauty and makeup memes. Lucy joined as their first guest host to talk all memes skincare, makeup and more.
In our monthly meetings, I also have Accessibility Hall of Shame and Hall of Fame sections. The Hall of Shame section often features accessibility overlays and why they are terrible. For our January Hall of Fame, I highlighted a resource I came across called Accessible Social. This is a free resource and education hub that shares best practices for creating accessible and inclusive social media content. Guides include best practices for sharing:
We meet Andrew Leland as he’s suspended in the liminal state of the soon-to-be blind: he’s midway through his life with retinitis pigmentosa, a condition that ushers those who live with it from sightedness to blindness over years, even decades. He grew up with full vision, but starting in his teenage years, his sight began to degrade from the outside in. Soon— but without knowing exactly when—he will likely have no vision left.
Andrew Leland talks with Phoebe Judge about slowly losing his eyesight. He was in high school when he received his diagnosis of the degenerative eye disease retinitis pigmentosa, also known as RP. “It was like, ‘I’m going out in the woods with my friends at night. And oddly enough, I’m bad at it.’” Full transcript of the podcast.
Andrew Leland’s memoir, The Country of the Blind, was a finalist for the Pulitzer Prize. I chose to listen to the audiobook version, narrated by the author himself, and found him to be incredibly charismatic and engaging.
In The Country of the Blind, Andrew Leland tells the story of his gradual transition into the blindness community with sensitivity and insight. He vividly describes his new sensory perceptions and emotions and outlines controversies about the training of the blind. His experiences will resonate powerfully with those in the autism community and beyond. A valuable book.
Temple Grandin
Not long after I found Andrew’s book, I encountered a non-fiction film about the same topic. I missed its brief release in theaters but the film will be streaming December 17th, 2024.
When three of their four children are diagnosed with retinitis pigmentosa, a rare and incurable disease that leads to severe visual impairment, the Pelletier family’s world changes forever. In the face of this life-altering news, Edith Lemay, Sébastien Pelletier and their children set out on a trip around the world to experience all its beauty while they still can. As they fill their memories with breathtaking destinations and once-in-a-lifetime encounters, the family’s love, resilience and unshakeable sense of wonder ensure that their uncertain future does not define their present.
This isn’t my usual year-end post. The mood has been bleak in the US, post-election. The incoming administration is openly hostile to people with disabilities, among many other marginalized groups.
Project 2025 takes a wrecking ball to federal measures that address real issues disabled people face in accessing critical supports and services. If even only some of the policies outlined here are fully enacted or required by executive order, disabled people would face insurmountable hurdles to living and participating in their communities.
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.
