In June 2020, I had the option to renew my DL online, as it was. Or go in person to make any changes. At the time, we were still a year away from a COVID vaccine so I chose the physically safer option. But today, the wait was over. I was able to quickly change my gender designation to nonbinary. And update my photograph (my hair color and eyeglasses have changed 5 or 6 times in the last 8 years).
Since my last drivers license renewal, I’ve also been formally diagnosed with Autism and ADHD.
Studies suggest that individuals with gender and sexual identities outside the cis-hetero binary were also three to six times more likely to have a diagnosis of autism.
The Swaddle: The Link Between Neurodivergence and Queerness, Explained
This all serves to help me understand myself and feel more confident in myself. Happy Pride, all!
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.
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 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 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!
Disability Pride Month is celebrated every July. It is an opportunity to celebrate the Americans With Disabilities Act. July 26th will mark the 33rd anniversary of the Americans with Disabilities Act. A lot has happened since the ADA was signed into law. In theory it prohibits discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications and access to state and local government’ programs and services. Unfortunately, we have a long way to go in practice. 33 years later we have Section 752 of the Consolidated Appropriations Act of 2023. This signals a new chapter in the pursuit of digital accessibility for federal agencies.
“The federal government can be the exemplar and catalyst for private- and public-sector accessibility by continuing to prioritize the employment of people with disabilities while providing the appropriate accessible infrastructure that facilitates our success.”
Anil Lewis, executive director of blindness initiatives for the National Federation of the Blind
A favorite part of my job is organizing a monthly Accessibility Community of Practice meeting. Folks from all over the company join us for a conversation about my favorite topic. Many months I’ve mentioned lifelong activist Judy Heumann in some capacity. In February, I spoke about the intersectionality between Black History Month and disability activism. I focused on the 504 Sit-In and Black Panther Party member Brad Lomax who was also a disability activist. He coordinated efforts to have the Black Panthers support protesters during the 25-day sit-in. In photos I’ve seen from the era, Judy Heumann is sitting right by his side.
She was an internationally recognized disability rights leader, often heralded as the Mother of the Disability Rights movement. Earlier this month, I was shocked and saddened when she passed away. She was a legend and still such a powerhouse in the ongoing fight for disability rights. I happened to be reading her autobiography when I heard the news (and when my copy from the library was due, I purchased my own).
One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human. A story of fighting to belong in a world that wasn’t built for all of us and of one woman’s activism—from the streets of Brooklyn and San Francisco to inside the halls of Washington—Being Heumann recounts Judy Heumann’s lifelong battle to achieve respect, acceptance, and inclusion in society.
If you haven’t already, I highly recommend watching the Crip Camp documentary on Netflix. It tells the true story of how a summer camp for teenagers with physical and mental disabilities laid the groundwork for a civil rights victory. Featuring Judy Heumann and her fellow activists. This small group of people came together in the right place at the right time and wound up working together to effect great change. They were instrumental in the passage of the Americans with Disabilities Act (ADA) of 1990.
Rachel Maddow posted a lovely celebration of the life and accomplishments of Judy Heumann.
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.
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.
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.
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.
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.
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.
“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!”
“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.”
The annual global event, World Usability Day, will be observed on Thursday, November 10th, 2022. I’m slated to deliver accessibility training to international colleagues that day, so I’ll be missing my local UXPA MN event but I’m a big fan. World Usability Day is a single day of events occurring around the world that brings together communities of professional, industrial, educational, citizen, and government groups for a common objective: to ensure that the services and products important to life are easier to access and simpler to use. The theme for this year’s World Usability Day is “Our Health.”
In our theme “Our Health” we look to explore systems that provide healthcare in all its many forms such as virtual/telehealth, electronic health records, healthcare products and all digital health related solutions. This theme will help us explore timely and important issues such as continuity of care, access to treatment, telemedicine, systems for mental health, exercise, nutrition and many more. In addition, Our Health includes health problems related to environmental issues such as air and water pollution impact on health.
If the UN recognizes usability as a core digital technology value, this will create an awareness of HCI/UX at the policy making level, increase the public engagement with the investment in user experience, potentially lead to a global impact, and let usability do its part for the UN’s Sustainable Development Goals.
