How Can Museums Be More Accessible? Ask the Community.

The facade of the Shedd Aqaurium in Chicago, Illinois,

The Shedd Aqaurium in Chicago, Illinois.

Last Thursday I sat on a panel at Chicago’s Shedd Aquarium with a theater director, a mother of three school-aged children, and a lawyer.

Theater director Brian Balcom uses a wheelchair, one of Laurie Viets’ children is on the autism spectrum, attorney Rachel Arfa is profoundly deaf and uses bilateral cochlear implants to hear, and then there was me, with Whitney the Seeing Eye dog at my feet. What do we all have in common? We enjoy going to plays, to concerts, to museums.

The four of us were there to talk with staff from a variety of departments at the Shedd (from VPs to senior directors to facilities staff) about ways museums and cultural institutions can be welcoming to all visitors — including those of us with disabilities.

Some of the ideas we shared were new to the audience, others served as good reminders.

We played well off of each other, and one staff member said afterwards that we’d shared information they would have never considered. “Even though when I thought about it, the idea was really just common sense.” A few examples:

  • Brian said he’d love to be able to join with others at the Shedd’s Touch pool exhibit and feel a stingray or sturgeon fish, but the way the touch tank is mounted you have to be able to stand up and reach over to get your hands in the water. “You have stools there for the kids to use, but I can’t stand on a stool.”
  • Rachel said she’d been to the Dolphin Show at the Shedd but without audio captioning she wasn’t able to take it in the way others did.
  • Laurie said taking breaks at quiet areas can help avoid meltdowns in museums, but when at a museum for the first time, she doesn’t always know where those quiet areas are.
  • For my part, I said I don’t mind at all when people ask me if I need help, but I like to know who’s offering.

Brian pointed out that a lot of kids come to the aquarium. “How old are kids when they’re this high?” he asked. I pictured him in his chair, placing his palm on the top of his head. “Seven or eight? When you’re planning new exhibits, maybe you could arrange everything so a kid who’s seven or eight can see it, that way anyone using a wheelchair should be able to access it, too.”

Rachel encouraged them to use audio captioning with all their shows and videos, noting that some older adults who are hard of hearing like audio captioning, too.

Laurie suggested signage and maps that mention where the quieter areas of the museum are.

I said I’m more comfortable accepting assistance if I know the person asking is someone on staff. “I can’t see your uniform, though,” I reminded them. “So if you think of it, introduce yourself before you ask.”

Our presentation occurred right smack dab in the middle of spring break week in Chicago, and the aquarium was p-a-c-k-e-d with kids. Eyebrows up! Instead of sitting at home watching TV, the kids were all learning how important the waterways are to us, and to the creatures who live there. Bonus: the Shedd Aquarium gifted all four of us with free passes to visit when it isn’t so crowded. Can’t wait to get my hands on one of those stingrays!

Read how one of these panelists helped designed an accessible rally

 

What a Broken iPad Taught One Dad About Parenting

I am so pleased to introduce Keith Hammond as a guest blogger today. Keith is a manager at the adult day services program at Easterseals Serving Greater Cincinnati, and he’s the father of two children on the autism spectrum.

by Keith Hammond

Keith and his kids

Keith and his kids, Hillary (left) and Steven (right)

There is a saying that claims “Challenges are what make life interesting.” As a parent of two children with special needs, I can assure you that life is always interesting.

My son Steven is on the autism spectrum and is predominantly nonverbal. My family has become accustomed to the ups and downs, finding that progress often presents new challenges. In summer of 2011, we had one such breakthrough that came with unexpected challenges.

We had always struggled with how to help Steven communicate. He had a Dynavox that brought moderate success, but the invention of the iPad opened up more possibilities thanks to the autism apps available. He made excellent progress during that school year.

The challenge was that Steven was rough on the iPad. He had a tendency to fling it away from him when he was done. This broke several of them — we probably bought five iPads the first year. As you can imagine, it made for an expensive year.

Oh, yes. We did buy Otter boxes for it. We armored that thing up so much that Tony Stark would have been impressed. But Steven is a master of destruction. Give him Captain America’s indestructible shield and in five minutes you will have a pile of red, white, and blue dust.

Steven had been attending summer camps, and so we sent his iPad to camp with him, and when he was finished using it to communicate with his aid there one day, he flung it away from him, as had become his practice.

Unfortunately, at that time, he was in a boat. In the middle of a lake.

Bloop! Straight to the bottom of the lake. The aide was very optimistic, diving in and recovering it from its watery grave. At home, my wife Amy covered it with rice. She’d heard rice can absorb moisture, and while that may work if you spill a drink on an iPad, it is less successful after the iPad was fully submerged in the middle of a lake. It was time for iPad number six. This one did not go to camp.

I wish that were the end of the story, but sometimes challenges have a way of hanging around to add insult to injury. A few weeks later, I ended up talking business with a camp rep at a gathering of multiple disability service agencies similar to Easterseals. For some reason communication devices came up as a topic — maybe I mentioned that my son used an iPad to communicate.

The camp rep smiled at me, nudged me, and said, “Hey, you want to hear something funny? This family we serve at our summer camp sent an iPad in with their son to talk, and you know what happened?”

I had a feeling that I did know.

“The kid threw it in the lake! Isn’t that hysterical?”

I weakly agreed, “Yyyyeahhhh—hysterical.”

“Can you believe it?”

What else could I do but nod knowingly? “Yes. Yes, I can believe it.”

Challenges definitely make life interesting. But there’s more. The rest of the saying is that “Overcoming them is what makes life meaningful.” Steven may not have learned how to be gentle with an iPad, but we have learned how to take the lows, and enjoy the highs. And that’s pretty meaningful.

Read one dad’s story about his daughter’s experience with the Dynavox

 

Stricter Rule for Service Dogs Goes Against the ADA

I am pleased to introduce Sarah Albert as a guest blogger today. Sarah teaches companion animal courses for the animal sciences department at the University of Illinois. One of the courses she leads each semester introduces the 600 students enrolled to important topics involving people and their animals, and one thing they discuss every semester is service dogs and legislation.

by Sarah Albert

Sarah Albert and her dog, Jax.

Sarah Albert and her dog, Jax.

I’ve been discussing the importance of the Americans with Disabilities Act (ADA) with my students for years, especially the laws meant to protect individuals with disabilities and their ability to use service dogs in public to aid them.

Imagine my surprise then when I found myself stumbling upon a newly introduced bill in the Illinois state legislature. The bill, HB 3162, would require the department of Financial and Professional Regulation to establish a service dog license program in our state and would require that same department to come up with rules and guidelines for this licensing program. If passed, this new law would:

    • Require the dog respond to basic obedience and the skilled task 90% of the time on the first command in both the home and public places;
    • Require the dog demonstrate basic obedience skills with both voice commands and hand signals (sitting, laying down, walking in a controlled manner, staying in place, and coming when called);
    • Require that the dog meets all of the standards laid about by the Assistance Dogs International group in public, and also being well behaved in the home;
    • Require that the dog is trained to perform at least three tasks for the disability;
    • Require the dog/handler to have a license card with a photograph of the dog and the names of the dog and handler;
    • Require a service dog in public to wear a cape, harness, backpack, or other similar equipment with a logo that identifies it as an assistance;
    • Require dogs be spayed/neutered and be vaccinated as determined by the dog’s veterinarian and applicable laws

At first glance, this may seem like a good idea, especially considering the string of fake service dogs entering public places. The rise in people bringing their pets to public places (posing as service dogs) is both dangerous and disrespectful. It jeopardizes the rights of individuals with true disabilities.

Individuals with disabilities have had to fight for their rights; rights that were finally afforded to them with the passage of the ADA in 1990. The ADA defines service animals as a “dog that has individually been trained to perform a task to aid an individual with a disability.” The law does not require a central licensing system, harnesses or vests on animals, professional training by approved organizations, or documentation of a disability.

So, why would this law be such a bad thing? Maybe we need to crack down on these fakers. To understand this question better, let’s consider three reasons why the ADA left a lot of these requirements out:

  1. Not all individuals with a disability have easy access to a medical doctor, and some cannot afford a visit to a medical doctor. A person with a diagnosed seizure disorder, for example, might not see a doctor regularly and making a doctor’s appointment just to get an official letter could be expensive.
  2. The requirement to get this license and equipment to identify an animal as a service dog. What costs fall upon the individual with the disability (a fee to apply, the cost of a vest or harness that is specially made)? What costs are required of the taxpayer to fund someone to test dogs and hand out licenses? Cost and confidentiality for the person with the disability is a huge concern – and one the ADA intended to avoid as it does not require medical documentation or vests for dogs.
  3. The obedience and skills required are too subjective

Let me try to explain item #3 on the list by taking a look at our seizure detection dog again as an example.

This individual who suffers from seizures may not have started out with a specially trained service dog. They may have a dog that helps them by alerting them to their condition — this could have been a pet who started to alert on its own. Alerting about seizures could become its specialized task (the one the ADA requires) but under this new proposed Illinois legislation, what three tasks will this dog be required to perform? How will they showcase the dog can do this on command if an impending seizure is needed to trigger the dog’s task? How will we ask a quadriplegic to use hand signals with his service dog? Or an autistic child to give perfect verbal commands under pressure to their service animal?

These seem like unnecessary demands for individuals who truly need these animals, and let’s also consider this: Dogs are still, well…dogs. They’re not robots who perform on command at a perfect rate. Heck, even robots mess up sometimes.

The expectation that a dog would be able to perform close to perfect in all situations is unreasonable. Even the most highly trained dogs are not always able to do this. It’s hard to know what the department will be looking for, and what will happen if someone with a true disability is denied their service animal simply because the dog had an off day.

With only these points in mind, it’s apparent this law is extremely harmful to individuals with disabilities, and completely goes against the intention of the ADA to protect their rights.

Stay tuned for a future post by Sarah Albert where she’ll outline some ideas to address the increase in fake service dogs.

 

A Group for Adults with Disabilities Gathers for Fun, Friendship

I am pleased to introduce Molly Wiesman as a guest blogger today. Molly has a long history with Easterseals, having received speech, physical and occupational therapy at Easterseals DuPage and Fox Valley from the time she was six months old until she turned eight. Molly served as an Associate Board Member at Easterseals DuPage and Fox Valley from 2011 to 2014 and has volunteered with various outreach groups there as well.

By Molly Wiesman

A flyer for CDFF's next event. Join CDFF on March 26 from 12 pm to 2 pm at Happy Apple Pie Shop in Oak Park for some pie and to make some new friends.

CDFF’s next event is Sunday, March 26.

I am 31 years old, and I have cerebral palsy. Since I have a disability, it may not surprise you that one of my interests for years has been connecting with other people with disabilities. And so the idea came to me: Maybe there’s a group out there with the sole purpose of helping people with disabilities find other PWDs to socialize with. Perhaps there were others out there like me who wanted this as well.

So I tried to find a group like this. I looked on Meetup.com hoping to find someone else’s group with these kind of goals, but no such group existed.

That’s when I got my idea. In my own life there was a definite lack of structured social opportunities for people with disabilities, so I set out to form my own group. Last December I started a monthly social group specifically for adults with disabilities. I called the group Chicago Disability Friends and Fun, or CDFF.

So far, CDFF has hosted two events. One was bowling, and the other was going out for coffee. And now, this Sunday, March 26, 2017 we will be going to Happy Apple Pie Shop in a Chicago suburb called Oak Park. Happy Apple Pie Shop not only sells pie, but is also a supportive work environment for people with intellectual disabilities.

We also have plans to attend a performance by solo performers with disabilities. The performance is produced by Tellin’ Tales Theatre, a group dedicated to shattering the barriers between the disabled and able-bodied worlds. Tentative summer plans for the group include seeing fireworks at Navy Pier and other fun activities!

Chicago Disability Friends and Fun has a strong presence on social media. CDFF is on Meetup.com, and we are on Facebook too. Anyone 21 and over who has a disability can join by searching Chicago Disability Friends and Fun on either of those websites and asking to join the group. You can also email me directly with questions at chicagodisabilityff@gmail.com. New members are always welcome!

 

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

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

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

Photo of Beth and her previous seeing eye dog Harper making their way through a shoveled, tunnel-like path.

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?

A monitor, like one found in a hospital room.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

Easterseals Thrive Book Club bookmark, which features an image of a dandelion. It reads "Join the Easterseals Thrive Book Club each month to read, engage, and connect with others. Use the hashtag #ThriveBooks, or check us out on Facebook."

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:

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

Memoir writers from one of the Chicago classes I lead

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 book, "Writing Out Loud: What a Blind Teacher Learned from Leading a Memoir Class for Seniors"

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?

A movie theatre with people all looking at a screenThe 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.