4 Questions a Dad of a Child with Autism Asks Daycare Centers

I am pleased to introduce Alex Robbins as a guest blogger today. As part of the Safety Today team, Mr. Robbins promotes home and community safety through his writing.

by Alex Robbins

A box of crayonsChoosing a daycare poses challenges for families on many levels. As the parent of a child on the autism spectrum, I had to use a bit of a different approach in seeking the best option for our family. It was not an easy process.

With any family there can be a guilt factor of leaving your child with strangers. You want to feel comfortable and at ease leaving your child at all. And it’s equally important that your child is comfortable and at ease, in addition to having the proper care and safety. This process becomes even more difficult when your child has special needs. If I had known then what I know now, it would have made a huge difference.

When touring a potential daycare center for your child, it’s best to think of yourself as a detective — one who needs to ask all the right questions to get a full understanding of the situation. In order to figure out if your child is going to be safe and successful, you need to do a little digging. Here are four essential questions you must ask any place you’re considering sending your child:

  1. What are your accreditation? All daycare centers must display the proper certifications — state licensing, first aid, CPR, etc. Accreditation is not a mandatory thing in most states, but you may want to make sure that the daycare center has been checked out and inspected by a reputable organization.
  2. How do you select your staff? It’s important that you know exactly how the staff is selected — how much experience is required to work there, if certain licenses are mandatory, etc. You should ask about criminal background checks as well. Not only that, but you should ask about the business’ staffing history. Is there a high turnover rate? That is, do people that work there stay there for very long? Inquire about the staff to child ratio. If there are only a couple staff members tasked with handling dozens of kids, it should throw up a huge red flag.
  3. Can I meet your staff? Don’t be afraid to ask to meet any and all staff that may come into contact with your child. If the daycare center is wary of arranging such meetings, be wary of their practices.
  4. Do you have an open-door policy? This one is pretty simple. Does the daycare center allow unannounced visits by parents, or do they make you call ahead to come in? If a daycare center doesn’t want you to drop by without warning, they might have something to hide. You should look for a center that has an open door policy.
  5. Can I see the daily curriculum? Presumably, you want your child to do more than eat snacks and nap while at daycare. You want your child to be mentally and physically engaged. This is why you must ask to see the center’s daily curriculum. You want to know how the daycare center is structuring your child’s day, from what activities are planned to how much time is devoted to learning vs. play. You may also want to ask to see past schedules, to make sure that the daycare center is active enough to change their schedule as the years pass. You don’t want to send your child to a stagnant program that hasn’t updated its curriculum in a decade.

Asking a lot of questions of a daycare staff is not rude or imposing — on the contrary, it’s necessary for any caring parent. If the center you’re touring has a problem answering your questions — by either being unwilling or unable — you might want to look elsewhere.

Are you looking for a daycare center for your child? Contact your local Easterseals to find out more!

 

A New Cookbook for People with Dysphagia Features Favorite Recipes

I am pleased to introduce Colleen O’Day as a guest blogger today. Colleen is a Senior Outreach Coordinator at 2U and works with schools to create resources that support K-12 students.

by Colleen O’Day

A recipe for rosemary mashed potatoes from the cookbook

A recipe for rosemary mashed potatoes from the cookbook. Click for a larger version.

NYU Steinhardt is changing the conversation on what eating can look (and taste) like for patients with dysphagia. According to The American Speech-Language-Hearing Association, 25% of adults in the United States are impacted by dysphagia.

Food is something everyone should be able to enjoy. Knowing this, Speech@NYU, New York University’s schools online master’s in speech-language pathology created Dining with Dysphagia: A Cookbook. The cookbook is a collection of recipes that are both easy to follow and easy to swallow.

Based on the NYU Steinhardt’s annual Dysphagia Iron Chef Competition, the goal of these recipes is to make eating an enjoyable experience for individuals with all levels of dysphagia. The annual competition is the capstone project of the intersession class between NYU graduate students from the nutrition program and the communicative sciences and disorders program to learn how to manage the needs of clients with different stages of dysphagia. The students create recipes as part of case studies for real patients.

One example from the 2017 competition was a young boy with autism who would only eat white, soft foods. The NYU students had to create a visually appealing, appetizing and nutritious meal that was completely white but also easy to swallow. Other cases from the competition included clients who had more medically-focused diagnoses.

“Food is nurturing, and too often it’s assumed that when someone is sick, we should just give them calories and nutrients. That’s not what food is, and we wanted to emphasize in this intersession class that regardless of a medical condition, we should always think about the importance of food – especially when someone’s sick,” says Lisa Sasson, clinical associate professor in the Department of Nutrition, Food Studies, and Public Health at NYU Steinhardt.

You can see (and taste!) for yourself by reading and trying out recipes from the cookbook here, and if you’re interested in learning more, check out NYU’s online masters in speech pathology program.

 

A Blind Woman’s Rant About Smartphone Use

Two hands holding an iPhone at a table.Smart phones, yes. Smart people, not always.

I heart technology. My talking computer has been a godsend since the first, crude sounding voice synthesizer was plugged into my IBM PC back in 1987. When the Internet was commercialized and we all started using email I could use it, too. Accessible technology allows me to surf the Web and all that. It’s been my unsighted window on the big world out there, and it’s enabled me to moderate this blog without being able to see.

My iPhone comes with an app called VoiceOver. I use it to text friends, book taxis, and sometimes, get this: I even make phone calls and talk to people with it. But when I sit down with you at dinner, or if I sit next to you at a bar, I don’t have my phone out.

And often, you do. And I think we’re having a conversation based on the fact that we started one, but it abruptly stops. And then I have to guess. In the past, it might be someone looking up at one of the TVs that have become ubiquitous in restaurants and bars: A big play in a game, some sort of cute Animal Planet show, a freakish accident in some other part of the world. I knew the televisions were there, so I came to expect that when someone ooed or cringed or laughed in a way that was inappropriate to what we’d been talking about, they probably had noticed something on the television screen.

I got good at figuring that all out, but I never liked conceding that whatever was on television was more important than the conversation we’d been having. And then the smartphone thing happened. So now, you can be anywhere talking with me, on a walk somewhere, driving in a car, sitting next to me at a ballgame, eating Thanksgiving dinner, at a concert, standing in line at the grocery store, eating a fancy dinner at an expensive restaurant, and I respond to what you are saying to me, and then you disappear. Are you okay? You still there?

Of course you are. You just got a text from someone more important than me. Or someone just posted a funny video on Facebook. Or rather than help me think through who it was who played the lead in “Heaven Can Wait” you took out your phone to look it up.

Okay, I’m second fiddle. I can deal with that. What makes me sad, though, is that without being able to see, I’m lost. You disappear, I can’t know what you’re doing, and I can’t know why. I don’t blame the technology. I just have a problem with that little bit of human behavior.

My husband Mike was slow to adopt a smart phone and swore he’d never get hooked, but I’ve caught him doing exactly the thing I just described, and it resulted in some minor skirmishes. Some major ones, too. These days, when Mike interrupts what we’re doing to look at his phone, he tells me before he takes it out of his pocket, and then he explains. If this happens at a time I don’t feel the situation warrants a Google search on the smartphone, I’ll ask him to put it away. Sometimes, he does. Progress!

 

For Guide Dogs and Humans, A Perfect Match Has Many Factors

Last Thursday my Seeing Eye dog Whitney and I took a train to Champaign to give a presentation to an animal sciences class at the University of Illinois. I speak to this class once a semester, and this time I spent a fair amount of the hour going over some of the qualifications necessary to become a guide dog instructor.

Most guide dog schools require instructors to have a college degree and then do an apprenticeship, and apprenticeships can last as long as four years. I hope I did a decent job explaining how complicated it can be to train dogs, train people, and then make a perfect match between the human and canine. That way the college kids might appreciate why the apprenticeships last so long.

Once apprentices finish their training and become full-time Seeing Eye instructors, they’re assigned a string (a group) of dogs and given four months to train that string. Throughout the training, instructors pay close attention to each dog’s pace and pull, and they make careful notes about how each dog deals with distractions, what their energy level is, and all sorts of other characteristics. And then? We blind students fly in from all over North America to be matched — and trained — with a new dog.

Photo of Whitney and Hanni.

Whitney and Hanni have an aloof tolerance for one another, but not much more. Whit wants to roughhouse. Hanni the doyenne is so over that. (Photo: Nancy Bolero.)

Seeing Eye instructors have to be as good at evaluating people as they are evaluating dogs. Our instructors review our applications before we arrive on the campus in Morristown and then ask us tons more questions when we get there. Instructors take us on “Juno” walks (they hold the front of the harness to guide us through all sorts of scenarios to get an idea of how fast we like to walk and how strong of a pull we’ll want from our dog). After that they combine all of this information with what they know about their string of dogs, talk it over with fellow instructors and the team supervisor, mix in a little bit of gut instinct, and voila! A match is formed.

Each Seeing Eye instructor trains more dogs than they’ll need for a class. If a dog has a pace, pull, or energy level that doesn’t match with a blind person in the current class, that dog remains on campus with daily walks and care, and perhaps more training, until the next class arrives. My first dog was one of those Seeing Eye dogs who went through a second round of training before she was matched with me. Back in 1991, the Seeing Eye knew that the dog they matched me with would be landing in the home of a very unique five-year-old boy named Gus, and that the dog would be in the hands of a woman who had never had a dog before. They must have figured Pandora would need all the extra training she could get!

Hanni was the perfect dog for everything going on during her years with me. We stayed overnight with this 17-year-old wonder and Nancy and Steven, the friends who adopted her when she retired, while we were there in Urbana. I can assure you, that girl is enjoying her retirement. Yellow Lab Harper saved me from getting hit by a car on State Street and retired early. The most dangerous encounter he’s had since was with a skunk in the leafy suburb he lives in with his people Larry and Chris now. My fourth dog Whitney had big paws to fill, and she’s managed beautifully.

My seven-year-old Golden/Labrador Retriever cross is a hard worker who loves to play as much as she loves to work. Her curiosity gets her in trouble sometimes, but when she guides me down busy Chicago streets, she is directed, determined, and driven. The only time she lollygags? When she realizes we’re heading back home. She wants to go, go, go! Whitney’s confidence is contagious, and she’s smart enough to know when to bend the rules without getting in trouble. So Whitney and I make a good match — we see eye to eye.

My upcoming book Writing Out Loud will include stories of all these dogs and more, and you can get a sneak peek of a short chapter online now by signing up for my newsletter.

 

What Would a Mandate on Audio Description Mean for Theaters?

A theatre seen from the perspective of a high up box seatQuick update on the disability lawsuit filed against Hamilton the Musical: A Forbes Magazine article this week reports that despite making significant progress, efforts to settle the lawsuit have hit a bump in the road.

Some background: A theatergoer who is blind has filed a class-action lawsuit against the producers and the New York City theater that’s offering the hit musical for failing to provide full and equal access to all theatergoers. I wrote a blog post about this last month questioning whether it is 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, and now the Forbes article quotes the attorney representing the plaintiff saying, “The parties have agreed to the major terms of a settlement, including injunctive relief and monetary damages” and that audio description services will now be provided at the musical.” From the article:

“The plaintiff still wants the show to add information to its website describing the headsets, train its box office staff to ensure that all blind customers can obtain information about the headsets, and use ‘qualified readers’ for its live audio description service. But, the Hamilton team refuses to add the terms to the settlement, arguing that it has remediated all of the requests.

The plaintiff has asked the court to bring in a mediator. The judge is expected to make a ruling on the request soon.”

Mark Lasser, the plaintiff in this case, claimed that blind and visually impaired theatergoers can not appreciate the show without using the audio description service. His case argued that the absence of the amenity violates the Americans with Disabilities Act, which prohibits Broadway theaters and other public places of accommodation from discriminating against individuals with disabilities.

Last November, the U.S. Attorney General signed a rule requiring movie theaters to offer audio description services when showing digital films. Movie theaters must let the public know about the feature and have staff available to assist patrons with the equipment.

The Forbes article said that “Given the similarities of the movie venue and the live theater venue, the plaintiff argued that live theaters must also be required to provide live audio description to the blind.” But there’s the rub. Movie venues and live theater venues aren’t all that similar. Audio description for movies can be recorded once and attached to a movie showing anywhere, anytime. Live theater is, well, live. No show is the same, so in order to have live audio description you have to have a live human being sitting somewhere in the audience at that exact show to inform guests who are blind or visually impaired about what’s happening in scenes without dialogue as well as scenes with significant visual effects. The describer talks into a microphone that goes immediately into the headset that the person who is blind or visually impaired is wearing that night. If no one who needs the service shows up for that particular performance, the describer’s talents go unused.

With that in mind, rather than require audio description for every show, the plaintiff asked the Hamilton producers and the theater to provide live narration through 25 audio description headsets during just one performance each week. In an interview with NPR, an audio description specialist estimated the total cost of the system would be about $25,000 with monthly maintenance fees. At the time of the lawsuit, only four long-running Broadway shows had made that investment (The Lion King and Wicked among them).

The NPR story reported that under the terms of the ADA, the attorney representing the blind theatergoer couldn’t seek damages for his client and claimed attorney Scott Dinin was simply using Broadway’s biggest hit as an example to spotlight the problem. “We have to get a mindset — how do we increase inclusion?” the attorney told the NPR reporter. “It should be top of mind — equality, accommodation and respect — because once people put that at the decision-making table, all the services will flow from that.”

The NPR story also quoted a drama critic saying, “It only makes sense to spend the money on accommodations once it’s clear a show is successful enough to run for a while.” That quote brings up a question. What of smaller theaters? I go to performances here in Chicago put on by companies with annual budgets that don’t top $25,000. At some point will they end up having to provide audio description as well? What if they can’t afford it? Is that reasonable? I guess the jury is still out.

 

 

Breaking Out of the Toilet Talk Trap

One of the topics many of our readers express interest in is the relationship and dynamic between siblings where one or both have a disability. What does this bond look like? Is it any different? And while we aim to provide information about disability in today’s world, we find that sibling relationships are best illustrated through stories told by siblings and their parents.

That’s why we’re pleased to have Keith Hammond back with another post about raising two children who are both on the autism spectrum. His last entertaining post described his son Steven’s propensity to break iPads. After reading today’s guest post, I’m surprised Steven didn’t try to break his Dynavox, too!

Keith and his kids

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

by Keith Hammond

As a parent of two children with special needs, I am often asked about how siblings with autism interact. Rather than try to explain, I think a story will illustrate it best.

My son, Steven, being non-verbal, relied on a Dynavox years ago. Steven’s Dynavox had two screens: an action screen and a noun screen. Steven could press a button on the action screen that said “I want to eat…” and on the noun screen, he could press his preferred item, say, “french fries.” The Dynavox would put the two together, and say in a robotic voice “I want to eat … french fries.” There was always a characteristically awkward pause in the middle putting the two screens together.

One day, we had taken the Dynavox to my wife’s cousin, Heather, who is a speech therapist in Columbus, Ohio. She tinkered around with it for about an hour or two, figured out how to program it, and added a few new things for us and his speech therapists at home. We figured that was that.

Well, Steven’s sister, Hillary, is really good with computers and an excellent visual learner. We had noticed she had been watching Heather program the Dynavox, but didn’t think anything of it. When we got home, however, our naivete was exposed.

Without our knowing, Hillary got her hands on Steven’s Dynavox and re-rigged it to where the noun was always the same, no matter what button was pressed. This was revealed when Steven began to say things like:

  • “I want to eat … poop.”
  • “I want to play with … poop.”
  • “I want a drink of … poop.”

Needless to say, Hillary was incredibly proud of her work and could not stop grinning. Neither my wife nor I could figure out how to reprogram a thing that an 8-year old figured out after a few hours’ observation. I could have watched the process for a couple of weeks and still never figured it out.

Thankfully, the school’s speech therapist was able to break us out of our trap of toilet talk. My wife and I scolded Hillary and told her not to do it again. Then, as any good parents will do, we shut the door and laughed ourselves silly.

As you can see, siblings with autism prank each other just as well as any other pair of siblings. Now, if you’ll excuse me, I need to…..poop.

Interested in reading more stories about siblings where one or both have a disability? Check out perspectives from other brothers and sisters here. We’d also love to hear stories about you and your siblings in the comments.

 

Losing Friends to Ableism

Text: Losing Friends to Ableism; Image: Multiple pins grouped together with one alone away from the group.“I would’ve made sure it was accessible if we were closer friends.”

An ex-friend said this after I expressed hurt over his party being held in an inaccessible venue. I wasn’t mad at him initially, since it was a surprise party, and it was planned by his family. They knew I couldn’t get inside, and they ignored guests who’d offered alternate, accessible spaces.

When this ex-friend told me of the event, all he said was, “sorry you can’t come.” That was it.

I wouldn’t have been too upset if this person offered to visit for a mini celebration with mutual friends. I wouldn’t have been angry if he gave a sincere apology rather than defensiveness and silence.

Ableism is the discrimination and oppression of people with disabilities in favor of people who are not disabled. It can take on many forms, from overt violence to inaccessible public spaces. Like racism or sexism, ableism is systematic and perpetuated regularly, and making accessibility a privilege offered only to closest friends or family is horrifically ableist. This person was someone I hung out with regularly, so I assumed we were good friends. But even if we were just acquaintances, what he said was dehumanizing.

To make things worse, he spouted that quote while knowing I was going through an emotionally vulnerable time in my life. I’m glad I ended that friendship, especially after realizing he was toxic in other ways as well.

This was not the first time folks have invited me to a party that was not accessible. One of my best friend’s mom hosted a party at a local VFW, and we all assumed it was wheelchair accessible because, you know, veterans.

But when I got there, there was a flight of stairs. Those friends were as upset and shocked as me, so we partied on another day at home — with ice cream cake. Compassion and following through to solve a problem make all the difference.

Dismissing my valid pain in the face of ableism is unacceptable. When that happens, the relationship needs to end. It can be hard (especially if you put a lot of energy into a friendship and genuinely enjoyed the company) but it’s necessary for survival. Healthy relationships begin with mutual respect. If you don’t respect each other, there is nothing to build on.

Losing friends to ableism exposes what people think of you as a human being, and that truth is painful. It’s another scar you get from living as a disabled person in a society that devalues you at every point. When I befriend abled people now, I do so cautiously and expect them to mess up occasionally. Unlearning ableism, for both abled and disabled people, is a process that never ends.

I still struggle with internalized ableism, and I am grateful to my disabled friends who help me through it. We learn from and hold each other responsible for breaking through those negative feelings. My abled friends who have put in the work to dismantle ableism through self-education and listening to/reading authentic disabled voices are people who I hold close. These are friendships I respect and cherish, and they’ll last a lifetime.

Read a longer version of this post on Erin Hawley’s Geeky Gimp blog.

 

Get Published, Win Cash in a Writing Contest for People with Disabilities

Photo of Andrea Kelton.

That’s the award-winning Andrea. Photo courtesy Darlene Schweitzer.

In addition to my job moderating this blog for Easterseals National, I also lead four different memoir-writing classes every week for senior citizens here in Chicago. Some writers in the memoir-writing classes I lead have had their memoirs published, but none has ever won an award (with a cash prize, no less!) for their writing…until now.

A poem Andrea Kelton wrote has been awarded a cash prize for second place in the Magnets and Ladders poetry contest! Andrea’s poem What a Feeling will be published in the Magnets and Ladders Spring/Summer 2017 edition along with a memoir called Water Balloons that she wrote for class.

Magnets and Ladders publishes writing by people with disabilities, and their submission guidelines are pretty clear:

  • Writers with disabilities may submit up to three selections per issue;
  • Writers must disclose their disability in their biography or in their work;
  • Poetry maximum length is 50 lines;
  • Memoir, fiction, and nonfiction maximum length is 2,500 words;
  • Single-space all submissions;
  • Use a blank line to separate paragraphs and stanzas;
  • Spell check and proofread all entries.

Previously published material and simultaneous submissions are permitted provided you own the copyright to the work, and Magnets and Ladders staff asks that you cite previous publisher and/or notify them if work has been accepted elsewhere.

So back to Andrea. A visual artist, Andrea Kelton was running a pottery workshop for children in 2005 when she first enrolled in our “Me, Myself and I” class sponsored by the City of Chicago’s Department on Aging. I couldn’t see the low vision magnifying reading glasses she used to wear to read her essays in class. It wasn’t until she read an essay about losing a job after being diagnosed with an eye condition in her twenties that I realized she can’t see well: Andrea has uveitis.

In 2009, glaucoma started setting in as well, leaving Andrea unable to read print. Like so, so many other writers in the classes I lead, Andrea did not give up. She learned to use an audio and magnifying computer program called Zoom Text to write and edit her pieces at home, and when it’s her turn to read in class, she passes a print copy to Wanda (a writer who was diagnosed with a severe hearing loss when she was young) and Wanda reads the piece aloud. It’s the deaf leading the blind!

Magnets and Ladders is an online magazine with a tag line that says it all: Active Voices of Writers with Disabilities. The submission guidelines make it clear the magazine “does not feature advocacy, activist, how-to, or what’s new articles regarding disabilities” and prefers poetry, memoir, fiction and non-fiction.

You can read the magazine or sign up for the email edition by visiting the Magnets and Ladders website. The deadline for the Spring/Summer issue is over already, but you have plenty of time to write before the August 15 deadline for the Fall/Winter issue. In the meantime, I’ll leave you with a sneak preview of Andrea Kelton’s prize-winning poem here. Congratulations, Andrea.

What a Feeling!
By Andrea Kelton

The easel
Holds a painting
Featuring a free-form tree
Under an explosive yellow sun.

The artist
Brush in hand
Stands back
Admiring her masterpiece.

Satisfaction bubbles
Then
Glee gushes and rushes
Through her four-year-old body.

Andrea glows with wonder
At this treasure she’s created.

Emotions explode
As she discovers
That
Doing art
Creates bliss.

 

Meet the Filmmaker Behind an Autism Documentary on PBS This Month

Spectrum poster of silouette of head with colors swirling outPlease join me in welcoming today’s guest blogger, filmmaker Jill Jones. Jill is the producer behind SPECTRUM: A Story of the Mind, a thought-provoking documentary about autism and sensory issues that PBS will be airing the next four weeks to honor Autism Acceptance Month (check local listings).

by Jill Jones

When I first told friends I was making an autism documentary, their eyes glazed over. When you think of the words ‘autism documentary’, what are the first words that come to mind? Controversy, screaming children, sad music. It seems boring, like something that’s been done many times before. But I had a good reason to make this film, and that reason is my cousin Grant.

I grew up in a small city in West Texas and have fond memories of visiting my Dad’s family in a small town. My aunt and uncle and their kids are among the kindest people I know. They have smiling eyes, a knack for making up fun games, and making me feel at home.

One memory plays over and over in my mind. I’m sitting inside, drinking Dr. Pepper. Everyone is telling stories, and I’m looking out the window at my cousin Grant jumping on the trampoline. I’ve been told that he has something called autism, and I don’t know much about what that means.

I know that Grant can’t talk. I keep watching him. He’s jumping for hours and flapping his hands. I’ve finished my Dr. Pepper, and he’s still jumping. The West Texas sun is setting, and he’s still jumping. He looks joyful and full of life.

Later in life, I kept hearing more about autism. Everyone is concerned about the cause of autism. It’s deemed a puzzle to be solved. But when I think of my cousin Grant, I imagine him jumping, and while I know his daily life is difficult, I wanted to know more about how he sees the world and what joy feels like for him.

And so, I started to make this documentary called SPECTRUM: A Story of the Mind to explore the experience of autism rather than the cause. Together with my fellow producer and cinematographer Brent Yontz, we packed up our film gear and started traveling the country.

We started by interviewing the famed Temple Grandin after a conference in Ohio. Then, we flew to Austin to meet Tito Mukhopadhyay, an author and poet who types to communicate. We went to Berkeley to meet Nick Walker, an aikido artist and autistic activist. And we went to Wisconsin to meet Judy Endow, an author and painter.

Each person shared their way of seeing and experiencing the world. For example, Judy explained how eye contact can be intense and painful. Tito described sensory overload as the world turning into “fragments” before his eyes. Nick helped me understand the beauty of his synesthesia.

I learned more than I could possibly fit into one film. Not only that, it felt impossible for me as a neurotypical to represent autism on screen. Instead, we aimed to create a sense of emotional truth.

Our composer, Frederik Wiedmann, wrote a brilliant soundtrack that echoes the joy I saw in my cousin Grant. Our lead animators, Gloria Arteaga and Richard O’Connor, created stunning animation, rich with color and movement. When the credits roll, I hope SPECTRUM inspires viewers to think about autism with a new sense of curiosity and maybe even joy.

See more stories of inclusion and achievement this Autism Acceptance Month

 

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