Category: disability

Published 2023/11/07

Sounds Like Misophonia

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
Dr. Jane Gregory

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.
Dr. Jane Gregory: Sounds Like Misophonia

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Published 2023/08/25

August Accessibility News Round-Up

Some fun news for a Friday! Writer and wheelchair user Sophie Morgan enjoyed the first wheelchair-accessible safari in South Africa’s Klaserie National Park. “The African bush and all of its delights are just waiting to linger in the memories of those who are able to experience her. Now, the world’s first luxury wheelchair-accessible safari is ensuring that privilege can belong to everyone.”

In the US, here are 10 Wheelchair-friendly Trails Through the Country’s Best National Parks. These accessible national park trails are suitable for people using wheelchairs, scooters, crutches, and walkers.

In my home state, our Great Minnesota Get-Together (State Fair) started just yesterday, Thursday August 24th, 2023. And runs through Labor Day, September 4th, 2023. This year they’ve made some improvements to make it even more inclusive. Their accessibility guide provides information about:

Mobility options, including electrical outlets for recharging electric mobility scooters
ASL interpreting services
Captioning services
Audio description services
Sensory friendly visits
Service animals

Last month was Disability Pride Month. It’s a time for us to celebrate within the disability community, sure. But also to put the spotlight on some challenges we face. In the case of athlete Alex Parra, it is the high cost of athletic prosthetics:

When I was told that a running blade was going to cost $35,000 I thought I was never going to be able to run again. My life changed when I received my running blade from the Challenged Athletes Foundation. Not from my medical provider or from the help of insurance but from a non profit that was willing to help

As time went on I realized there needs to be change so I wanted to bring awareness to the disability community and how much that we have to spend on any disabled equipment or medical devices that we NEED.

So I wanted to run a Marathon on crutches. Although I didn’t finish the 26 miles (16 miles total) I was still able to accomplish something that I never thought I would’ve been capable of doing

This would not have been possible without everyone’s love and support along the way so truly from the bottom of my heart thank you. With your help we have been able to raise a total of $2500 and bring change along the way!
Alex Parra

Last but not least, I love this silent disco story. Vibrating haptic suits give deaf people a new way to feel live music. Made possible by Music: Not Impossible. An off-shoot of Not Impossible Labs, which uses new technology to address social issues like poverty and disability access. A recent event at Lincoln Center for the Performing Arts called “Silent Disco: An Evening of Access Magic” showcased the suit’s potential.

Concert goers dancing at the Silent Disco dance party at Lincoln Center, New York City on Saturday, July 1, 2023. Haptic suits designed for the deaf community were provided by Music: Not Impossible. — Lanna Apisukh for NPR

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Published 2023/04/24

Spring Cleaning for Accessible Content

It is springtime in Minnesota. Which means we reached a high of 88° one April afternoon, then it snowed just days later. Despite the wildly fluctuating weather, I feel the urge to purge. I’ve tossed piles of junk mail in the recycling bin. Winter sweaters will be moved to storage (soon, I hope). Other items will be given away via our local Buy Nothing group. I may not go the full Marie Kondo method with my tidying, but controlling clutter in my physical space makes me feel better, mentally. You know what else sparks joy for me? Accessible content!

Self-portrait holding a lit sparkler in the darkness with the light illuminating my face

Recently, WebAIM released their annual report on the most popular 1,000,000 home pages on the web. 96.3% of them detected WCAG 2 failures. And that’s just what automated testing found. Manual testing would likely reveal many more.

Across the one million home pages, 49,991,225 distinct accessibility errors were detected—an average of 50.0 errors per page.
The WebAIM Million

Many of those pages may not be relevant anymore and could be retired. Or portions of their content are likely out of date. Clean it up! Disability and accessibility expert Sheri Byrne-Haber has a great post about this:

Sometimes the best way to make something #accessible is to get rid of it.

I wrote an article about this a while back – the very first thing accessibility leaders should think about when tackling remediation is “do we need this at all?”

– Do we need this graphic / table?
– Do we need this CAPTCHA?
– Do we need this 17 year old inaccessible report that no one ever opens
– Do we need a press release on the election of someone to the board that is no longer on the board?

Don’t pack all your content indiscriminately and move it over to the new accessible template. Go through a cleanup first, and just bring the valuable content over that your users still need.
Sheri Byrne-Haber on LinkedIn

There’s more on her website. Her blog post Starting a new accessibility remediation project? outlines helpful “approaches and prioritization that will make your end goal of an accessible website easier and cheaper.” As someone who has been involved in many, many content migration projects, I fully back this approach. The most successful ones only ported what was still purposeful. Content that has been removed doesn’t need to be remediated. Unnecessary content is a distraction. Inaccessible content can be a blocker. Slimming websites down to the essentials will reduce cognitive load, making them more usable for everyone. Ditch that carousel no one clicks through. Get rid of that busy graphic. Embrace the joys of minimalism.

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Published 2023/01/04

World Braille Day 2023

In 2018, the United Nations issued a proclamation declaring January 4th to be World Braille Day, on the anniversary of Louis Braille’s birth. Read more about his life on this page with 19 Fascinating Facts About Louis Braille. We celebrate him now as someone determined to invent a system of reading and writing to bridge the gap in communication between the sighted and the blind. In his own words:

Access to communication in the widest sense is access to knowledge, and that is vitally important for us if we [the blind] are not to go on being despised or patronized by condescending sighted people. We do not need pity, nor do we need to be reminded we are vulnerable. We must be treated as equals – and communication is the way this can be brought about.
Wikipedia

Illustration of Louis Braille alongside of the Braille alphabet represented by red dots

Braille is a tactile representation of alphabetic and numerical symbols using six dots to represent each letter and number, and even musical, mathematical and scientific symbols. Braille (named after its inventor in 19th century France, Louis Braille) is used by blind and partially sighted people to read the same books and periodicals as those printed in a visual font.

Braille is essential in the context of education, freedom of expression and opinion, as well as social inclusion.
United Nations

Braille has come a long way since the 1800s. Now there are refreshable braille displays — computer hardware which has a series of refreshable, or fluid, braille cells on its surface.

Braille displays provide access to information on a computer screen by electronically raising and lowering different combinations of pins in braille cells. A braille display can show up to 80 characters from the screen and is refreshable—that is, it changes continuously as the user moves the cursor around on the screen, using either the command keys, cursor routing keys, or Windows and screen reader commands. The braille display sits on the user’s desk, often underneath the computer keyboard. The advantages of braille displays over synthetic speech are that it provides direct access to information; allows the user to check format, spacing, and spelling; and is quiet.
American Federation for the Blind

It’s a bit like carrying around an e-book vs lugging around boxes and boxes of books. Though this equipment is still expensive, it is becoming more affordable as the technology advances.

Additionally, braille is found in more places these days:

In hospitals;
On medication labels;
In banks;
On restaurant menus;
In the business world, on brochures, utility bills and the like;
In accessible parks;
On public transit;
On product packaging from beauty products to board games.

However, more needs to be done. The U.S. Food and Drug Administration does not mandate the inclusion of braille lettering on pharmaceutical drug packaging. In many cases, these examples are the exception rather than the rule. I want inclusive communication, in all forms, to become the norm.

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Published 2022/11/27

Complicated Consumerism

Capitalism never stops. Pre-internet, I recall the deluge of catalogs and mailers clogging up our mailbox. Plus the endless commercials on tv and radio. We still have that, despite trying to opt out of it. E-commerce has made it even more excruciating. Unless one is diligent with their ad blockers, nearly every website visit shoves ads in our faces and we end up on email lists from any company we’ve purchased something from in the last decade. I first learned about “Buy Nothing Day” 20+ years ago and I’m a big fan. I relate to the slogan “the more you consume the less you live.” In the U.S., most of us have so much unnecessary stuff. When I do give gifts to friends and family, I prefer experiences over things. Travel, activities, food, etc. We’re in the thick of the holiday shopping frenzy again. Black Friday has passed, and yesterday was Small Business Saturday. If you are planning to shop this season, please consider supporting the organizations who employ those of us with disabilities.

From Angela Young via LinkedIn:

“82% of people with disabilities are unemployed. How can you support our community this holiday season? Look no further — check out this list of Small Businesses that specifically employ and support us!!! 👇 👇 👇

Popcorn for the People, led by CEO Rachel Cheng, creates careers for disabled people – specifically people with autism. I ordered Butter, Cheddar, Cookies n’ Cream, and Caramel and received my bright red box this week. Let me tell you — all of the flavors are phenomenal! My personal favorite way to eat popcorn is by mixing caramel and cheddar together for a sweet and savory sensory explosion. What’s your favorite flavor??

Bitty & Beau’s Coffee was created by parents Amy Wright and Ben Wright, who have four beautiful children — three of whom have autism and Down Syndrome. They primarily employ people within the autistic and Down Syndrome communities as a way to show that individuals with differences can be a valuable, contributory part of their community! (And their coffee is pretty badass too — check out the holiday roast! I had it during a recent visit to their Annapolis, MD location, but you can ship nationwide across the United States!

Design By Humans is an art collective founded by Mindy Hernandez that supports many disabled artists (my personal favorite is DisabledAF) that you can find by searching “disabled” at the top of the page. I love the way DisabledAF specifically situates themselves at the intersection of Queer and Disabled, my favorite place to be!!

Collettey’s Cookies was founded by Collette Divitto, a rockstar speaker and human with Down Syndrome. She employs 10+ other employees, all with disabilities. You can check out much more of her story on YouTube!

Alissa Smith is a cancer survivor and an incredible warrior who lives with chronic illness… AND she’s an incredible jewelry designer!! Check out her creations at her online store and support her efforts! The Harper Cosmopolitan ring is absolutely stunning… which piece is your favorite??

Tricia Baden suffers from Lyme Disease, which causes chronic headaches. The toxins in regular candles can exacerbate headaches and migraines, so everyone benefits from her amazing scents at Flores Lane that are toxin-free and use a soy-based wax! The chakra and meditation collection is my personal favorite for my Buddha and crystal altar!”

What a wonderful roundup. Adding to that list, the Isadore Nut Company:

“In 2018, Tasya toured Jewish Housing and Programming and the kitchen at Cornerstone Creek, where she learned more than 82 percent of adults with disabilities are unemployed. She decided to create a workplace for people of all abilities.

Tasya moved production to Cornerstone Creek and began partnering with social service organizations and advocating for persons with disabilities. Now more than half of the staff at Isadore Nut Company are adults with developmental or intellectual disabilities.

Tasya believes that everyone, regardless of ability, should be given the opportunity for employment because everyone holds value and has something to contribute.”

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