Hamilton to be Sued for Accessibility, But is it Reasonable?

by Beth Finke

That’s me and Lafayette outside after the Chicago preview performance. Or me and Jefferson. Whichever you prefer.

An NPR story this past week reported that a theatregoer who is blind is suing the producers and the theater that’s offering the hit musical “Hamilton” in New York City because they are not offering headsets with live audio description for theatergoers who are blind or have visual impairments.

You regular Easterseals blog readers know that I’m a huge fan of the word “reasonable” when it comes to reasonable accommodations for people with disabilities, but in my view, the “reasonable” part applies to both parties. Is it reasonable for a blind patron to insist the theater have a paid audio describer on hand at live productions of Hamilton for people who can’t see the stage?

Sure, someone would be there live to describe the actor’s movements, but at what expense? Who on Earth would want to mask the sensational sound of the live music on stage by wearing a headset?

Thanks to my dear friend Colleen, I was able to attend a preview of Hamilton when it opened in Chicago last year. Audio description was available at the performance we went to, but with so much information out there about the hit musical online and in audio books, I didn’t use them. I already knew that this would be one theater piece that would be more about music than action. Here’s an excerpt from my review. The excerpt opens with a description of my husband Mike buying me the CD ahead of time:

“He even bought me the CD and read some of the lyrics to me before I figured out where to find them online to research the wording myself. Anytime he left home, he’d return to the sound of the Broadway performance blasting from our living room speakers. ‘You can leave it on,’ he’d sigh, but I turned it off. More fun to listen alone anyway. Then you could dance and sing along.”

In my review, I report on what a good sport Mike was about my little obsession. He asked questions about — but did not attend — “In the Heights” (Lin-Manuel Miranda’s first Broadway musical) after Colleen and I went to see Chicago’s Porchlight Music Theatre’s production a few weeks before we went to Hamilton. And, being a non-fiction kind of guy, Mike happily listened along when I’d go to bed with the audio version of Ron Chernow’s Alexander Hamilton (the biography that inspired Hamilton the musical).

Colleen chose to listen to the book on audio, too, rather than read it in print. The audio book is 38 hours long. It is absolutely astounding that the musical Hamilton covers pretty much the entire Alexander Hamilton story in three hours. The founding father packed a lot into his short life, leaving more than 26 written volumes of work and oodles and oodles of personal letters behind when he died. And when he was alive? Alexander Hamilton liked to talk. To tell all that in three hours, you need to fit a lot of words in to every measure. You can’t hold onto a musical note very long — you’ve gotta move right along to the next scene. Using hip-hop was a no-brainer. And, simultaneously, brilliant. One thing that is stunning about Hamilton is that it never stops, and there are no speaking parts. Every word is sung. You wouldn’t want to miss a word, and I think you’d miss a lot with someone in your headset describing the action.

The NPR story reports that Scott Dinin, the attorney representing the blind theatergoer, is not seeking damages for his client.

“He can’t under the terms of the ADA. He’s trying to make sure that theater becomes more inclusive by spotlighting the problem using Broadway’s biggest hit.”

Is that reasonable? I don’t think so.

Guide Dogs Never Get a Day Off

by Beth Finke

The snow this week has a lot of people asking me if my dog Whitney likes being out in winter weather. Truth is, she doesn’t have much choice. Poor guide dogs, they never get a day off work!

The snow started falling in Chicago Sunday night, and it’s still coming down this morning. Snowy weather is often more time-consuming, more physically and mentally tiring and can be more dangerous than traveling in good weather.

When I was a kid, I thought it was magical the way snowfall muffled the sound around you. I still do. But my walks with Whitney this week won’t be the magic I’m looking for. Enough snow fell last night to mask the audible cues I use to navigate the city. Commuters who can see will be trudging through the Loop (downtown Chicago’s business district) with their heads down to avoid the snow pelting their faces. This would be fine if they all had dogs like mine to guide them, but they don’t! Whitney will be on her own, weaving me around the blinded commuters in our path.

And that’s not all: Snow has accumulated between the raised, circular bumps I’ve come to rely on to tell me we’re at the edge of a curb ramp, so I won’t always be sure where we are.

“Stay home!” friends and family tell me. Easy for them to say, but some of us have to go to work! And then there’s this: We live on the seventh floor of an apartment building, and Whitney needs to get out and “empty” every once in a while. Not to mention, get some exercise.

Eyebrows up! All I have to do on days like this is take a deep breath and remember what trainers drummed into our heads when my blind peers and I were first learning to work with our guides: Trust your dog. Hold on tight to Whitney’s harness, and follow her lead. “Whitney, forward!”

Check out these tips on how to stay safe in winter weather conditions

Why are People with Disabilities Being Denied Organ Transplants?

by Beth Finke

A story in the Washington Post last weekend about a 27-year-old with autism who was denied a heart transplant caught my attention. The story says that according to the denial letter sent to his mother, Paul Corby was rejected because of his “psychiatric issues, autism, the complexity of the process…and the unknown and unpredictable effect of steroids on behavior.”

Isn’t that illegal? Not according to that story: “In fact, mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.”

I was diagnosed with juvenile diabetes when I was a kid. That’s what caused my blindness. Over the years, friends have asked if I might consider a pancreas transplant.

It’s true a pancreas transplant might offer a “cure” for type 1 diabetes, but physicians can be reluctant to transplant a pancreas alone for diabetes without renal failure. The reason? Side effects of the immunosuppressant drugs required after transplantation are more detrimental than the complications of diabetes.

When someone with type 1 diabetes is experiencing renal failure, doctors reason they may as well combine a pancreas transplant with the kidney transplant. That way you end up with a healthy pancreas that won’t damage the kidney anymore.

My kidney is doing fine now, thank goodness, but if the time does come where I need both a kidney and pancreas transplant, could blindness be a reason to deny me? According to the Washington Post article, it could. The story says some teams weigh mental and psychological issues heavily in deciding whether someone should be eligible for a donor organ, and others do not. “A few even admit that they automatically rule out people with certain disabilities.” More from the article:

“As a society, we want individual transplant centers to maintain discretion about putting people on their list or not. We don’t want government playing doctor at the bedside,” said Scott Halpern, an ethicist at the University of Pennsylvania medical center that rejected Corby. “Having said that, the current system lacks the accountability that we might wish it to have. There are virtually no checks and balances on the decisions that transplant centers make.”

So there you have it. I am hopeful my kidneys stay healthy and I never need a dual transplant, but if I do, I hate to think blindness might prevent it from happening.

Signing up to be an organ donor is much easier than you might think. A web site called Donate Life America provides a list of where to register in your state, and United Network for Organ Sharing (UNOS) provides an easy-to-read fact sheet dispelling common myths about organ donation.

One thing I learned from that list: a history of medical illness does not prevent you from donating organs, and neither does old age. With recent advances in transplantation, many more people than ever before can be donors.

An Online Book Club That Features Disability in Literature

by Erin Hawley

Download the official Easterseals Thrive Book Club bookmark!

In my youth, especially my teen years, I struggled to find books by disabled authors, or books featuring disability at all.

When I managed to read such novels, the authors often portrayed disability as negative — something not worth living for, a burden on society, or a character flaw. Discussing these tropes in a public forum is so important for the disability community, as we can dismantle the stereotypes by sharing our authentic experiences and opinions. We must also support authors with disabilities whenever possible, because we should be the ones telling our stories.

And that’s where Easterseals Thrive’s new book club comes in. Thrive is an online community that empowers young women with disabilities through support and pride. Our book club highlights reads that feature disability; we create a space for discussion, offer author Q&As, host live chats, and more. We even have our own bookmark you can print out and use! Some previous works we highlighted were:

• On the Edge of Gone by Corinne Duyvis,
• Borderline by Mishell Baker,
• Say What You Will by Cammie McGovern.

Our next book is Lois Lowry’s Gathering Blue, a YA novel following the journey of Kira, a young woman with a physical disability living in a community that shuns those with “imperfections.” When she’s called to the Council of Guardians, Kira is surprised to find they have an important job for her to undertake. This novel, set in a future both scary and relatable, brings forth topics of self-worth, determination, and the necessity of fighting for what is right.

The discussion starts now and lasts through the end of April. If you want to join in, visit the Thrive Book Club Hub for more info, and follow the #ThriveBooks hashtag on Twitter! We’d love for you to read along with us.

If you use the hashtag and tell us about your favorite book, we’ll even send you a fancy bookmark in the mail while supplies last.

What I Learned Teaching a Class for Seniors

by Beth Finke

Beth (pictured second from the right) with her memoir writing class.

In addition to my job moderating this blog for Easterseals, I also lead four different memoir-writing classes every week for senior citizens here in Chicago.

Each week I assign these writers a topic, they go home, write 500-word essays, and bring them back the next week to read aloud. After weeks, months, years of hearing each other’s stories, these writers have come to know each other very well. “It’s not a therapy session,” one of them told me with a laugh. “But it sure is therapeutic.”

Writers in those classes tell me that writing a story down on paper for class each week keeps their brains working. Sitting down to write provides a person with time to think, and then to search their brain for just the right word. If that fails, searching through the dictionary can solve the quandary and expose writers to new words, too.

Writing a story down on paper makes it feel more official, and because I have every writer read their story out loud in class, they think hard about what they write.

The cover of Beth’s upcoming memoir.

Writers in my classes tell me how important they think it is to stay active, both in body and in mind. One writer said she thinks about her brain as a muscle. She tells me, “The more you use your brain, the stronger it gets!”

These writers are such an inspiration to me that I’ve written a book about them, and now Golden Alley Press, an independent publisher outside of Philadelphia, will be publishing Writing Out Loud: What a Blind Teacher Learned from Leading a Memoir Class for Seniors next month.

It’s astonishing how comfortable Nancy Sayre, my editor there, has been with my blindness: together we’ve puzzled through ways to include me in decisions on everything from cover design to branding. During a meeting over the phone last week we thought hard about how many photographs to include in Writing Out Loud, and I was flattered when Nancy credited the “clear imagery” my writing creates. She wondered out loud whether it might be better to use very few photographs and let readers imagine what everything in Writing Out Loud looks like.

I heartily concurred with that thought. “That’ll help the readers get right into my head, they’ll have to imagine things the same way I do.”

The folks at Golden Alley Press continue to help me shape my writing for the better, and you can get a sneak peek of a short chapter online now: Just complete the form here. The book includes a bit about how an internship I had at Easterseals ten years ago led to my part-time job here, so stay tuned, there’s more to come!

Where Were the Actors with Disabilities at the Oscars?

by Beth Finke

The 2017 Academy Awards presentation was all about diversity. So where were the actors with disabilities?

A Los Angeles Times interview with Academy Award winning actress Marlee Matlin asks the same question. Matlin is deaf, and her Oscar for best actress in Children of a Lesser God marks the last time an actor with a disability won an Academy Award. The only other actor with a disability to ever win an Oscar was Harold Russell, a veteran who lost both hands during World War II. He earned two Oscars in 1947 for his role in The Best Years of Our Lives.

We at Easterseals are especially interested in what Marlee Matlin has to say about disability — she is an Easterseals Honorary Board Member. In last week’s interview the reporter asks Matlin what she thinks the state of opportunities out there for actors who have disabilities. Her answer:

“There are an amazing number of disabled actors out there, and not only in the United States. Even though 20% of the population has a disability, 2% of roles in Hollywood are for disabled characters and of that 2%, only 5% are played by people with disabilities. The rest are played by actors without disabilities.”

Matlin went on to say that she wishes casting directors would better understand the importance of acknowledging real diversity. “Diversity is a beautiful, absolutely wonderful thing, but I don’t think they consider people with disabilities as part of the diversity mandate.”

Marlee Matlin is an amazing advocate for people with disabilities and has shared her talent and her disability with a generation of TV watchers through notable roles on Reasonable Doubts, Law & Order: Special Victims Unit and Switched at Birth. Her television success is a wonderful demonstration of what people with disabilities can do — when given the chance.

Traveling With Kids for Spring Break? Try This Free Resource.

by Beth Finke

We live in Chicago, and trust me, O’Hare International Airport can be an overwhelming sensory experience for anyone, let alone a child with a disability. Our son Gus is grown now, and as a child he only flew with us twice. The first time, he was 2 years old. After the second time, when Gus was 10 years old, we vowed he’d never fly with us again. But now maybe we’ll consider giving it another try.

The Autism Program of Illinois (TAP), The Hope Institute for Children and Families, and the Have Dreams Project have come together to create aviation accessibility kits they say could make the trip from ticket counter, through security, on to the gate and finally into the air easier for people with special needs, especially those on the autism spectrum. These organizations worked with the City of Chicago and the Chicago Department of Aviation to create kits at three levels of complexity. The educational materials aim to reduce anxiety and make travel more accessible and enjoyable for people with ASD and other disabilities as they travel to airports, go through checkpoints, and fly on the planes.

The kits lay out the steps involved in moving through an airport in words and pictures, and although they were made with the help of the Chicago Department of Aviation, they are intended for use at many other airports across the state and country.

So like I say, maybe it’s worth another try. Airline tickets may be expensive, but hey, you can download the aviation accessibility kits for free!

Read more about what it’s like to travel as a person with a disability.

Share with a National Newspaper How Disability Has Affected Your Job

by Beth Finke

The United States edition of The Guardian is looking for stories from people who feel they’ve struggled to find or secure work because of their disability, but if you want your story included, you’re going to have to write it quickly: The deadline to submit is this Thursday, February 23, at midnight.

Have you struggled to find or secure work because of your disability? Do you keep your disability hidden from your employer? Have you experienced bullying or harassment at work? If you have a disability at work, The Guardian wants to hear from you.

You can even submit your contributions anonymously using their online form, just make sure you submit it by Thursday at midnight. The Guardian plans to publish an edited selection on their Careers site this Friday, February 24, 2017, as part of its disability at work week, and they might share contributed stories across social media as well.

How a Volunteer Became a Lifelong Friend

by Beth Finke

My friend Benita Daniels Black grew up in the Bronx, taught at public schools in Queens, and raised her son in their apartment in the Village. She loves New York City, and she planned on living there the rest of her life. But then she went to her grade school reunion.

That’s Benita with her beloved grandson Sam (photo courtesy of Josh Daniels).

Dr. Henry Black attended P.S. 114 in the Bronx (sixth-grade class of 1954) with Benita and took time off from his job as Chairman of the Department of Preventive Medicine at Rush-Presbyterian-St. Luke’s Medical Center here in Chicago to attend that grade school reunion, too. The New York Times published a very sweet story about the epistolary romance that ensued after that. “Within a few weeks, they’d amassed 1,200 e-mail messages,” the story said, quoting Benita saying how exciting it was to be with someone you shared a childhood with. “So much could be shorthanded.”

Benita and Henry were married at the New York City Municipal Building on April 19, 2002. Shortly after joining Henry here in Chicago, Benita started volunteering at Blind Service Association (BSA) to read aloud to people like me.

Week after week she’d help me weed through the pile of books and magazine articles I’d lug into the BSA office on Wabash. We learned a lot about each other in a very short time — she by the things I brought to read, and I by the inflection in her voice as she read them out loud.

When we discovered we were baseball fans, and we both followed the American League, we started going to games together. Henry and my husband Mike joined in the fray, and the four of us started going out for meals, too, mixing politics with baseball talk.

Ten years ago Benita let me know that she and Henry were moving to Manhattan. I wasn’t surprised. New York City was their home, after all, and I was just grateful for the serendipity that connected the two of us during her time in Chicago.

We’ve visited each other a few times since, and we keep up with each other via phone and email. When Benita emailed me recommending the audio version of Supreme Court Justice Sonia Sotomayor’s memoir My Beloved World, I took note. Benita and Justice Sotomayor both grew up in the Bronx, and I am guessing some of the talented students Benita taught at public schools in Queens reminded her of young Sonia. In her email, Benita pointed out that the Supreme Court Justice and I both grew up with hardworking single moms (Sonia’s father died when she was young, just like me) and that I’d be able to relate to Sonia’s stories about learning to give herself insulin injections when she was in second grade (Sonia and I were both diagnosed with Type 1 diabetes as children).

But could Sonia Sotomayor write well? If Benita was recommending the book, I figured the answer had to be yes. I just finished reading the memoir, and I figured right. It’s a great read, and it’s well read, too: Rita Moreno is the narrator. Yes, that Rita Moreno. Anita from “West Side Story.” She’s friends with Sonia Sotomayor, and hey, I suppose when a Supreme Court Justice asks you to read, you do it!

You can tell that these two women know each other well by the way Moreno intuits which word to punch, where to pause and which phrases her friend would have said with a laugh. As a reader, the Academy award-winner is second only to Benita Daniels Black. And in a wonderful, wacky 21st century way, Benita still acts as my reader, sending links to New York Times stories she knows I’ll be interested in, and recommending books and authors she’s sure I’ll like.

If only the robotic drone of my talking computer would read with a New YorkYawk accent.

Why I’m Celebrating My Retired Seeing Eye Dog Today

by Beth Finke

Hanni enjoys her retirement — here she is on a winter run at the forest preserve near her current home in Urbana, IL.

Bring out the party hats! My second Seeing-Eye dog Hanni turns 17 years old today. You read that right: 17.

Hanni retired from guide work when she was 11 years old and left Chicago to live with our dear friends Nancy and Steven downstate. They started celebrating the big day last Sunday with a visit to nearby Homer Lake — Nancy sends audio messages to my iPhone whenever they head to that forest preserve. The audio reports are a joy to hear — they always come with background sound of Hanni panting after a run or chomping on well-deserved treats.

“We’re getting ready for Hanni’s big 17th on Wednesday,” Nancy said in Sunday’s audio report. “It’s a beautiful day, sunny, the geese are out, hard to believe it’s February.”

I guess it should be hard to believe that a 17-year-old Labrador and golden retriever cross can still get out and enjoy a romp at a forest preserve, but I’ve gotten used to it. My first Seeing Eye dog, Dora, retired at 12 and lived to be 17 years old, and my third dog, Harper, who retired after saving us from getting hit by a car in Chicago traffic, is healthy and robust at age eight. The excellent health of these mature dogs has everything to do with the wonderful friends who adopt my retired dogs, but the care and research the Seeing Eye and other guide dog schools put into their breeding programs deserves a lot of credit, too.

Some schools still train service dogs who’ve been donated from individuals or from animal shelters, but the more established guide dog schools know they have to breed their own dogs in order to end up with the unique traits so important to guide work:

• Excellent health
• Intelligence
• Temperament
• Willingness to work
• Ability to thrive on praise

The Seeing Eye breeds Labrador retrievers, golden retrievers, Lab/golden crosses and German shepherds. Decades of research has gone into the Seeing Eye’s breeding program, much of it driven by the fact there is no “perfect Seeing Eye dog.” Dogs of all sorts of temperament, size, strength, speed and energy are necessary to match with blind people who come to the Seeing Eye school with, guess what, all sorts of temperament, size, strength, speed and energy levels.

The Seeing Eye web site says their breeding station has “interconnected geometric pavilions, designed so that dogs can see each other and see people enter the kennel, so barking –not to mention stress – are greatly reduced.” Their goal? “To provide a facility most conducive to a positive early childhood experience for the puppies.” I just love that.

And I just love Hanni, too. I’m so grateful the Seeing Eye bred her for me, and so happy to think of her celebrating with Nancy and Steven today. Happy birthday, dear Hanni. Happy birthday to you.