Don’t Miss This Jazzy Celebration at the Library of Congress

Jazz musician Matthew Whitaker wearing earphones, sunglasses - in front of keyboard piano setI’ve written a post here before about how much I appreciate the free audio book program the Library of Congress provides for people who are blind or have physical disabilities that prevent them from reading print. This year marks the 90th anniversary of the Pratt-Smoot Act, the legislation for the “Books for the Blind” program, and to celebrate, the National Library Service (NLS) is sponsoring a concert.

Jazz musician Matthew Whitaker has been a patron of the NLS music service for many years, and if you’re a fan of television’s 60 Minutes you may recall an episode a year or two ago featuring him on piano. He’s a highly gifted performer, age 19, with a lot of credits so far and a couple of albums out besides.

In normal years, the National Library Service would have held the concert in the Coolidge Auditorium at the Library of Congress, with an interview preceding, and a reception to follow. This year is not a normal year, so instead, they’ve pre-recorded the concert and an interview the National Library Service Director Karen Keninger did with Matthew.

Full disclosure: Karen and I got to know each other when we both were in New Jersey training with our Seeing Eye dogs in 2012. She returned home with new dog Jimi that year. I came home with now-retired Seeing Eye dog Whitney and we’ve kept in touch ever since. She is the one who alerted me to this historic anniversary. The celebratory concert streams free of charge on YouTube and the Library of Congress Facebook page at 8:00 pm Eastern Time today, March 3, 2021, and I’ll be tuning in. The interview is available at 8:00 a.m. Eastern on the Library of Congress YouTube channel.

No time to watch right now? No problem! The concert will remain on YouTube for two years, so if you miss it today, you can still catch it later. As Karen says, “If you like jazz, you won’t be disappointed!”

 

Snow and Ice: It’s an Accessibility Issue

Beth and Seeing Eye Dog Luna posing in a snowy park, Beth in a long red winter coat.

Beth and Seeing Eye Dog Luna posing in a snowy park; Beth in a long red winter coat and a face mask.

Every winter here in Chicago, I find myself questioning why it is that when snow plows clear passage for cars, the snow mounds they leave on curb cuts and crosswalks go unshoveled. What about the pedestrians? This article in Forbes says it well:

Plowing equipment exists that can clear sidewalks at least as efficiently as streets are cleared by conventional plows. College campuses and companies with large and complex facilities use them. But very few cities take full responsibility for clearing sidewalks the way they all do for clearing streets. And by and large, either taxpayers don’t want to fund it, or politicians don’t want to risk asking. So while some winter weather cities and towns are better than others for winter accessibility, very few do a genuinely good job of it.

Temperatures are hitting record lows (and are staying there) in many parts of the country this week. With so many people working or attending school classes from home due to COVID-19 regulations this winter, many Americans are spending less time in their cars and more time walking outside. Traveling on snowy icy sidewalks to take short breaks from work, run errands, help neighbors, or just get exercise can be difficult. And if you use a wheelchair, it is often impossible.

We appreciate city services plowing the streets, but if they don’t clear the crosswalks, curb cuts and sidewalks , how can pedestrians get safely across to the other side? In addition to people with certain disabilities, other parts of the U.S. population do not drive, including:

  • Children
  • Many people age 65 or better
  • Those who cannot afford a personal vehicle
  • A growing number of people who simply choose not to drive.

Sidewalks and crosswalks are necessary for all of us who don’t drive. More from that Forbes article:

If this was purely a weather problem, then disabled people would have no choice but to endure, or somehow find a way to move to warmer climates. But winter weather accessibility barriers are also a policy and practice problem. Winter weather would be substantially less of a problem if cities and towns made it a higher priority.

Maybe we, pedestrians, all need to band together? In the meantime, those of us stuck at home in the aftermath of a snowstorm might want to use our time inside to check out our winter safety tips for people with disabilities.

Happy reading, and hang in there — it’s all gotta melt sometime.

 

Hearing Actor Riz Ahmed Nominated for Best Actor for Sound of Metal, A Film Portrayal of Deaf Culture

Crom SaundersI am pleased to introduce Crom Saunders as our guest blogger today. A theatre interpreter and American Sign Language (ASL) master, Crom has a M.A. in Creative Writing and began teaching ASL and Deaf Culture at several universities before getting tenure at Columbia College Chicago, where he is currently Director of Deaf Studies.

by Crom Saunders

Late last year I began seeing online articles and posts on social media expressing positive buzz about the portrayal of Deaf culture in Amazon Studio’s new movie Sound of Metal. I teach a college course called Deaf Representations in Media, so I was simultaneously hopeful…and ready for disappointment.

I was hopeful for a film that would present a refreshing take on deafness and Deaf culture (rather than the same tired old tropes that have been utilized ad nauseum since the 1920’s). But I was also prepared for disappointment because I have often seen such promotional ballyhoo about other films in the past, only to find them lacking and one-dimensional.

Sound of Metal is a story about a heavy metal drummer who loses his hearing rapidly, goes into a funk, meets several Deaf characters and realizes that Deaf people lead fulfilling lives.

Recognizing that the Deaf culture amongst the Deaf community goes hand-in-hand with American Sign Language (ASL), Director Darius Marder brought Jeremy Lee Stone, a Deaf (ASL) sign coach on board as a cultural consultant. Actor Riz Ahmed portrays the drummer in the film and spent five days a week for seven months with Stone to prepare for his role.

This is a welcome break from tradition regarding hearing actors portraying deaf characters in films. A hearing actor portraying a Deaf character might learn a few lines in ASL, but nothing about the culture or the community behind the language. When nominees for the 2021 Screen Actors Guild (SAG) Awards were announced this morning, Ahmed was nominated for Best Actor for his portrayal of Ruben. The actor stated the following about his role in an interview with Variety Magazine:

“I think we bridged a bit of a divide between hearing and deaf culture which is often so segregated, and that’s the fault of hearing people. They overlook, marginalize and oppress deaf people. It was great to make that connection. Our connection was something on the unique side. It opened my eyes to the richness of Deaf culture.”

This presents quite the contrast with Alan Arkin, who garnered a Best Actor Oscar nomination for his role as a Deaf-mute character in the 1968 film The Heart is a Lonely Hunter. Arkin prepared for his role by visiting a school for the Deaf. He observed, “I visited a school for deaf-mutes in Montgomery and I learned they are not freaks. Stereotyped in my mind, they were always people who were not terribly bright, wildly animated at all times in trying to express themselves, and undisciplined emotionally.” At the end of the interview he surmised that he got that impression from watching another Deaf character portrayed by a hearing actress: Patty Duke as Helen Keller in The Miracle Worker. Arkin also added that, “The sign language was the easiest thing to learn, I got it in a day or two.” Spoiler alert: He really didn’t. His use of sign language in The Heart is a Lonely Hunter is stilted, emotionless, and unrealistic.

Ahmed expresses himself much more authentically in Sound of Metal. His gradual immersion in the Deaf community and his language development of ASL ring true within the context of the story. In his Variety interview, Ahmed also commented on the process of learning ASL and how it not only enabled him to create a better portrayal but also opened the door to a new world for him. “To anyone who’s considering learning ASL or British Sign Language or any kind of sign language, do it because it will enrich your life with new friendships, new connections, and a new culture.” This is indeed a refreshing take on a hearing actor’s preparation for a Deaf role — almost completely original in Hollywood’s history of Deaf-centered stories.

However, one must question the originality of Sound of Metal, which has many similarities to the film It’s All Gone Pete Tong. The 2005 British-Canadian comedy concerns a DJ who loses his hearing rapidly, goes into a funk, meets a Deaf character and realizes that Deaf people lead fulfilling lives. Sound familiar?

Sound of Metal does have a few advantages over that 2005 film, though. Sound of Metal takes a more real-life approach to Ruben’s experience and transformation, and is far more inclusive of Deaf people—with one glaring exception.

Not Ahmed in the role of Ruben, but Paul Raci as Joe, the wise old Deaf person who lost his hearing in the Vietnam War. Paul Raci is a hearing actor who grew up in a Deaf family, so his ASL skills are at least at a native level of fluency. What irks me is that Raci’s portrayal has already generated Supporting Actor Oscar buzz, and I find that rather tiresome. The quality of his acting in this role is actually moot. The issue at hand is giving the role to the most qualified person, and the most qualified person to portray being a Deaf person is a Deaf person.

With a plethora of seasoned Deaf actors who can also speak for themselves, who could have been portrayed as veterans of Vietnam, Korea, or even Desert Storm, this casting decision is the latest in a long, long tradition of misguided intentions. Sound of Metal might be more authentic than many previous films and shows featuring Deaf characters, but the lens and portrayal still lack true credibility. However well the film Sound of Metal might perform at award ceremonies this year, I predict that finally, when a well-crafted film comes along with all Deaf roles appropriately cast with Deaf talent, there will be a new sound: the thunderous applause of a community validated.

 

The White House is Asking for Input from People with Disabilities

The White House on a bright, partly cloudy dayAmong the many changes the new administration made in its first week was to make a commitment to ensure its site is accessible to all Americans. A White House Accessibility Statement released this past week says its Whitehouse.gov site will conform to the Web Content Accessibility Guidelines (WCAG) version 2.1, level AA criteria — guidelines that not only help make web content accessible to users with sensory, cognitive and mobility disabilities, but ultimately to all users, regardless of ability.

The statement says its ongoing accessibility efforts will “work toward making WhiteHouse.gov as accessible as possible,” and, to that end, they are looking for help from experts: us!

You read that right. Users with disabilities are encouraged to send comments on how to improve the site’s accessibility, and here’s how you can :

  • Switchboard: 202-456-1414
  • TTY/TDD Phone Numbers (for the Hearing Impaired Only):202-456-6213
  • Visitors Office: 202-456-2121

Let’s chime in, shall we? Let freedom ring!

 

Remembering Dr. Martin Luther King: The Path to Positive Change

As we remember Dr. Martin Luther King Jr. and the vital work he did and continues to do through his legacy, I would like to reflect on the hope that change can bring.

Change is not something that just happens automatically, but it can happen in the wake of pain. Over this past year, this country experienced the unimaginable with the pandemic, with hundreds of thousands of people losing their lives. The divisiveness in this country was highlighted over and over, with the death of George Floyd, Breonna Taylor and countless others, and culminating in the reprehensible actions taken at the U.S. Capital.

But in these dark moments, we also see people engage in acts of love that make the unbearable bearable and let each of us know we are not alone in our fear or grief; social distancing does not mean disconnection from each other, whether it’s connecting through Zoom with your friends in quarantine or holding a virtual vigil for those we lost.

If you are feeling powerless right now, remember that Dr. King once said, “If I cannot do great things, I can do small things in a great way.” Every action we take to help each other, and to be kind, sets us forth on a path to positive change and brings hope for a brighter future. Through self-reflection, community outreach, or other acts of love, we can be a beacon of that hope we so long to feel again. Let’s listen to Dr. King’s words and put them into practice every day.

 

Speech Software, Smartphones: Why Braille Still Matters

Louis Braille was born on January 4, 1809. His birthday is now annually recognized as World Braille Day, and January is Braille Literacy Awareness Month. I have long been aware of World Braille Day, but it’s only recently that I learned that the entire month is dedicated to Braille — how cool is that?!

Picture of a letter written in Braille.

A page written in Braille along with standard characters and words.

Though I don’t use Braille as often as I used to, it’s still a part of my life. I first learned Braille when I started preschool at age 3. My memories of this are foggy at best, but I do remember the first Braille book I read was called Go and Do. It introduced me to contractions, which are letters or symbols that are used to substitute for actual words. For example, the letter G by itself stands for the word “go.” Braille has a symbol for the word “and,” similar to how in print, you use the symbol “&” to mean “and.” The letter D by itself stands for the word “do.” This makes typing easier, as you do not need to type the entire word.

I read a lot of Braille in my school years. As far back as middle school, I remember textbooks being several volumes. Braille books are heavier, and the dots can take up so much space that the average print textbook is split up into several volumes when converted to Braille. This made for some accommodating in middle and high school — for my school presentations, I often needed to know ahead of time what pages we’d be working on so I could see if I needed to retrieve another volume of the textbook. If this concept confuses you, don’t worry; it confused my teachers when I’d try to explain it. They’d ask, “Doesn’t your textbook there just have all the pages like ours does?”…not in a patronizing way, but out of simple confusion.

Braille books can be very expensive, especially when they come in several volumes. So, you can imagine that this is why, when I’m reading books for pleasure at home, I prefer to listen to audio books. I read a lot of books (I love reading!) but after reading Braille for quite a while, my fingers can actually get tired. Sometimes, they hurt!

When I went to college, most of my assignments were done electronically. I could read textbooks using VoiceOver (the speech synthesizer on my iPhone), but I often took tests in Braille. I was given the option to either have them read tests to me in person or provide them to me in audio format. If I chose the audio format, someone from the Disability Resource Center would record the exam, I listen to the recording and write my answers in Braille. Later, my Braille answers would be transcribed into print for the professors to grade.

Audio format seemed like it took too much time, so I arranged to have my exams provided in Braille instead. The professors simply emailed the exam to the Disability Resource Center and they’d provide it in Braille. That way I wouldn’t have to rewind the audio or ask someone to re-read something if need be — I could simply use my fingertips to reread the question if I needed to.

To take notes in class, I’d use a Braille Note Apex (it essentially looks like a screen-less laptop). Similar to how words appear on the screen when you type on a laptop, the words would appear at the bottom on a Braille display. I could have used my laptop to take notes, but I would’ve had to use headphones so my classmates wouldn’t hear the screen-reading software on my computer. You can see the problem there: it’s hard to hear a class lecture with headphones on! Using just one earbud in my ear meant I might be too focused on the speech software and miss something the professor said. So I went with Braille.

As you might know from previous posts, I graduated from Northern Illinois University in December 2019. Most people think of Braille as a way to read books, but now that I’m done with school, I use it in ways you might not think of. We used my Braille writer — a very large typewriter of sorts — to label the cards so I can play card games with my family. I use Braille to read signs that verify bathroom signs or room numbers (though this was more applicable in college, but I’m sure it will be useful again post-pandemic, when I get out and travel more). Another example: I sometimes use sound clues to locate restrooms myself when alone at a coffee shop, and I check to see if there’s a Braille sign near the door to indicate it is the women’s restroom.

A common concern among parents is that after a blind person is through with their education, with everything being electronic these days, Braille skills will diminish, and a person may not read as well. But Braille is still there and still useful, from reading signs to playing games to even writing an old-fashioned card if you want to.

One of my (sighted) friends learned Braille and every year she writes my birthday card in Braille, and I’m grateful that she taught herself Braille and that I still use it outside of school.

 

Keep This Link to DOT Complaint Form Handy: New Service Dog Rule Starts Today

Beth with her fifth Seeing Eye dog, Luna. It’s their Seeing Eye graduation photo, taken outside the Seeing Eye School in Morristown, NJ in January, 2020Early in December 2020, I wrote a blog post about the final rule issued by the Department of Transportation (DOT) on traveling by air with service animals. The rule was published in the Federal Register a few weeks later, which cleared the way for it to go into effect today, January 11, 2021. From now on, passengers have to pay to have emotional support animals travel with them.

Service animal organizations – including the Seeing Eye, where I trained with my service dog Luna – are pleased with certain aspects of the rule, including the definition of service animal as “a dog, regardless of breed or type, that is individually trained to do work or perform tasks for the benefit of a qualified person with a disability.” But one thing about the 2020 ruling many service dog organizations are not crazy about is the new form DOT is requiring service-dog users to fill out before traveling.

Starting today, airlines will be required to have the Service Animal Air Transportation form on their web sites, including a version accessible to people who use assistive technology – the screen reader I am using with my laptop to write this article, for example. Service dog organizations say they will be watching closely as airlines begin to implement the new rule. Many view the requirement to fill out a special form when flying as an unnecessary and unfair burden to impose on qualified service dog handlers.

The Department of Transportation can only take action against an airline if individuals exercise their right to file a complaint. Qualified service dog handlers who encounter barriers to air travel – including inaccessible forms – are encouraged to file a Department of Transportation Civil Rights complaint form found online here.
And if it helps to have the link all spelled out the DOT civil rights complaint form can be found online at: https://www.transportation.gov/airconsumer

 

A New Way to Help People with Disabilities Keep Their Jobs

A young man serving a drink while working as a baristaI’ve written a fair amount of blog posts over the years encouraging employers to hire people who have disabilities, and I’ve also filled out plenty of surveys about what it’s like to be a person with a disability looking for work. This is the first time I’ve heard of a survey asking employers to share their experiences hiring and/or managing people with disabilities: The Shirley Ryan AbilityLab (formerly known as the Rehabilitation Institute of Chicago) is currently conducting a survey to learn what helps people with disabilities keep their jobs. They say survey results will help guide services to people with physical disabilities to improve employment outcomes. From their press release:

The 30th anniversary of the Americans with Disabilities Act provides an opportunity to look at the progress we’ve made as a nation, and to identify issues that require our continuing efforts.

As a person with a disability who has enjoyed many years of employment here at Easterseals, I’m glad to hear there is interest in discovering ways to help me and other people with disabilities keep our jobs. I’m very interested in what might be learned from this survey, and I know I’m not alone. If you are a qualified employer or manager, maybe time off at home during the holidays will leave you with 30 free minutes to fill it out. Please share the link and QR code with your business networks as well — thanks.

 

Rebuilding Our World: The Wisdom of People with Disabilities Can Help

A train passing byI happen to turn the radio on this past weekend just in time to hear a guy named Mik Scarlet saying the COVID environment is giving average people a better understanding of what it’s like to be at odds with the “built environment.” Scarlet, a wheelchair-user who is an expert in access and inclusion, explained it like this: “Non-disabled people are finally getting the idea of what it’s like to be told I’m sorry, you can’t come in, we don’t have access for you. It’s having your world shrunk, when it’s not your fault.”

What I’d tuned in to that day was the National Public Radio Show On the Media. The weekend show was crediting the unique experience people with disabilities have as a group when it comes to rebuilding infrastructure.

During the show, host Bob Garfield wonders out loud if those experiences might help policy-makers and advocates when it comes to rebuilding our post-pandemic world. “Well, isn’t this awkward?” he asks in a refreshingly sardonic way. From there, he points out that eight billion people around the world are living in a centuries-old environment constructed in a way that now, during the pandemic, is dangerous: narrow passageways, crowded indoor spaces, poor ventilation. “Now we’re going to have to retrofit the entire built world to accommodate a new biological reality,” he says. “To some people, though, that’s a movie they’ve seen before. Namely, those with disabilities. The universe is facing what people who use wheelchairs have face their entire lives: an infrastructure that just doesn’t work.”

After his interview with Mik Scarlet, Garfield turns to Sara Hendren, professor at Olin College of Engineering. The mother of a child with Down syndrome, Hendren is the author of What Can A Body Do? How We Meet the Built World. The book discusses ways to apply the wisdom and work of people with disabilities to the process of redesigning a post-pandemic world.

Curb cuts, wheelchair-accessible bathrooms, auto-captioning, automatic doors, Braille buttons on elevators…over the past half-century, people with disabilities have worked for accommodations that are now so commonplace everyone takes them for granted.

What will be next?

Hendren says things we’ve seen this past year — seniors-only shopping hours, flexible remote work options, accessible food and grocery delivery services, opening shared streets to pedestrians and bicycles — are all changes people with disabilities have long been asking for but were not made until the mainstream needed them.

What I learned from the broadcast — and then from listening to the podcast again afterwards — is that when it comes time to start reimagining the post-pandemic-built world, policy makers would do well to take lessons from the disability rights movement. Disability advocates have a lot of experience rebuilding society to accommodate new biological realities. I hope the people in Washington are listening!

 

How My Disability Helped Me Get Through 2020

Thinking back on everything that happened in 2020, one can’t help but wonder. How on earth did I manage to get through this upside-down year? My answer might surprise you. It sure surprised me!

I credit my disability.

Let me be clear — the fact that I am blind is not what’s helping me cope. Being blind is somewhat problematic in a pandemic. Social distancing, for example, can be difficult because it is hard to judge what six feet is, but my Seeing Eye dog Luna and I do our best.

The thing that helped me cope this year is the experience of going blind. Three decades ago, I survived a similarly scary year. 1985 was the year I lost my sight. Like 2020, a year of loss and limitations.

And lessons learned.

Some of those lessons? Slow down. Ask for help. Be brave. Be resourceful. Learn new skills. Help others. Make mistakes, and learn from them. Be grateful. Focus on things you can do rather than fret over those you can’t.

Simply put, allow life-altering events to do just that: alter your life. I wonder…do other people who’ve transitioned to life with a disability feel this way, too?

The skills I learned the year I lost my sight all came in handy when my husband Mike was admitted to the hospital in March this past year with the COVID-19 virus:

  • Luna and I were alone, on our own, for ten days. I wouldn’t have made it through without her, and I’m grateful to the Seeing Eye for her training.
  • People contacted me to see if I needed help, and I answered honestly. I could use some food! Far-away friends and family charged meals-to-go at local restaurants, and neighbors
    volunteered to pick up my dinners and deliver them to our condo.
  • I got more adept at using VoiceOver (the speech synthesizer that comes with every iPhone) to text and answer the phone when Mike called, or when caring doctors, social workers, friends and family contacted me to see how he’s doing.
  • My part-time job moderating this blog for Easterseals National Headquarters saved me from feeling lonely. Public policy, special education, health care, funding – all extremely important issues during a pandemic. My work here kept me engaged, and I am grateful my job continued, working from home.
  • Before he got sick, Mike had been taking Luna out for her nighttime “empty” of the day. Now, just like when I was losing my sight, I had to be brave. I donned a mask and disposable gloves every night, and assumed bad guys were staying home during the pandemic.

As days went on with Mike still in the hospital, I started ending my email and text responses by asking that, “If you pray, please pray for us. If you think, send good thoughts our way.”

They did. It worked.

After ten days away, Mike came home. And that’s when it dawned on me. I hadn’t been home alone at all: all those people thinking about us helped us through. In its own upside-down way, 2020 has taught me what a gift it is to love – and be loved by –  people so much that we ache to be with them in person. I’m hopeful for 2021, a year of good health, happiness…and hugs.