Two very different disabilities=one very happy marriage

CANE FOR BLINDI met Bryan McMurray years ago when we were both in Champaign-Urbana at the University of Illinois. Bryan was born blind, and his wife Joanna uses a power wheelchair — she contracted juvenile rheumatoid arthritis when she was five. Bryan graciously agreed to write a guest post for our Easterseals national blog today about ways their interdependence helps them create a loving home.

by Bryan McMurray

My wife Joanna and I have been married 23 years. I still see as well – or as poorly, I guess — as ever! And my darling wife? She now uses a small power chair for inside the house, an all-terrain power chair to shop and zoom around outside, and she drives our minivan.  For seven months of the year she uses me (and the muscles I thankfully acquired from 15 years of high school and collegiate wrestling) to lift her in and out of our swimming pool.

We how we work together all the time, and one of the things we enjoy doing together is cooking.  In other words, I don’t mind cooking, as long as Joanna does it! She is happy to cook, but has to have everything right in front of her, within reach. So I get everything she needs to use to cook arranged. The result: we eat amazing healthy meals, I haven’t burned the house down (yet), and we love every minute we are together cooking and eating.

Of course, we have our moments. Take the morning Joanna decided to organize her spice area and forgot to tell me she had left the big (I mean big) full bottle of garlic olive oil on the table where she cooks. I was wiping the table, fast and efficient-like, and and that lovely-smelling bottle of garlic oil crashed to the floor. Our little poodle jumped in the middle of the oil and glass, and, well, even those of you hardly paying attention to this love saga will have a good idea of how we spent the rest of that morning together.

I was able to retire early from my position at the University of Illinois in Champaign-Urbana six years ago due to budgetary constraints and inducements. To think, now we get to live every day together, almost always together, and we love it.

We spend much time — and both of our hearts — reaching out to and helping international students, and we do really live as if every single day was our last here on this earth. I love words, but have none to describe how wonderful, and fun, and amazing, and beyond words, it really is living together with this woman I love so much.


I’m not proud of being disabled, but I’m not ashamed either

Roughly one in five Americans lives with a disability. So where is our pride movement?

That’s the subhead to an op-ed piece called Becoming Disabled in yesterday’s New York Times. The piece was written by Rosemarie Garland-Thomson, an academic who has a disability.

The piece is well-written — It’s a worth-while read. Professor Garland-Thomson shares plenty of statistics and numbers about people with disabilities.  In addition to the Centers for Disease Control and Prevention estimate in the subhead (one in five adults in the United States is living with a disability), the piece links to a National Organization on Disability study saying 56 million people in America have a disability. People with disabilities are the largest minority group in the United States, and that group is growing. And so, Professor Garland-Thomson reasons, “Because almost all of us will experience disability sometime in our lives, having to navigate one early in life can be a great advantage.”

Thanks to the ADA, riding a train is a yawn for Whitney.

Thanks to the ADA, riding a train is a yawn for Whitney.

The professor did her homework for this piece, covering everything from the “correct” way to refer to disability as a new “politicized identity” to how studying the history and culture of disability allowed her to “come out of the closet” about hers. What she didn’t do in her piece, however, was answer the question in the subhead. “Where is our pride movement?” she asks.

I think I have the answer. I cannot speak for all people with disabilities, but I do not find losing my sight early in life to be a “great advantage.” I am not proud of being blind, and I can’t imagine marching in a parade to boast about my disability.

I’d rather be able to see.

That said, I am not ashamed of being blind, either, and I think that’s the important issue here.

In the op-ed, Professor Garland-Thomson points out that disability is everywhere once you start noticing it. “Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere,” she writes. “When they were in fact there all the time.”

This is due in large part to the passage of the Americans with Disabilities Act (ADA) in 1990. Thanks to the ADA and other civil rights legislation, I’m able to access audio books from the National Library Service, use my talking computer to access web sites and do my job here, have my guide dog lead me onto buses, trains and airplanes, use Braille to find my room number in hotels, check out menus on line before we eat out, procure health care even though I have a pre-existing condition, and vote on my own using a special audio machine. Here at Easterseals,my Seeing Eye dog and I are part of the fabric.

I should add that another critical piece of legislation that has helped people with disabilities go mainstream is often overlooked. Back in 1975, the Education for All Handicapped Children Act (EHA) gave children with disabilities the same opportunity for education as those students who do not have a disability. That act gave way in 1990 to the updated Individuals with Disabilities Act (IDEA). The result: Kids with disabilities grow up as part of the everyday fabric of day to day life.

Americans with and without disabilities can take pride in the legislators and lobbyists and supporters who helped pass the ADA and the laws that led up to it. All of us should take pride of our resourcefulness, the different ways we manage to do the things we want to do, and how, throughout our history, Americans have fought together for civil rights legislation to reorganize and rebuild our country into one that allows everyone to participate.

I’m proud of all of us.


Tips from an IEP meeting veteran

tip-clipart-blackboard-helpful-tips-detailed-illustration-heplful-text-43676517Every year when school starts, parents of children with disabilities find themselves with more to consider than new teachers, school lunches and after school programs. They have to think about new Individualized Education Programs (IEPs), too.

I have firsthand knowledge of the IEP process: our son was born with physical and developmental disabilities. Gus is grown now, and a lifetime of IEP meetings has left me with suggestions to help younger parents gear up for the annual get-together with school staff and administrators. Preparing for an IEP meeting ahead of time is one way you can help make school a positive experience for both you and your child. Here are some tips:

  1. Go into the IEP meeting with the attitude that parents are an integral part of the process — your input is valuable.
  2. Make a list ahead of time of ways your child is able to function independently at home and bring that list along to the IEP meeting – it will give the staff ideas of ways your child can work as independently as possible in an educational setting as well.
  3. Know your goals for the school year and bring a list of them along, too.
  4. Listen as well as talk — sometimes we learn far more by listening than talking.

I can’t claim that every IEP meeting we went to for Gus went smoothly, but it always helped afterwards to remind ourselves that while school was a very important part of our son’s life, it wasn’t the only place where Gus learned new things. Life experiences with us outside of school provided an important part of his education as well. And when we had serious problems with Gus at school, talking with the appropriate staff member separately from the IEP meeting proved to be the best way to address those issues.

Best wishes for your next IEP meeting –and for the entire school year, too!


Taking the stage — stories about life with disability

On stage

Beth and Whitney take the stage.

Performing on stage this past weekend ended up being a lot of fun – especially for my Seeing Eye dog.

I wrote here earlier about an accessible play writing class I took over the summer that was geared to people with and without disabilities. We performed some of our plays Saturday at a wheelchair-accessible theater in Chicago. The performance featured live captioning and American Sign Language for people who are hard of hearing and audio headphones for people who want the action on stage described. A touch tour of the stage and props took place ahead of the show for anyone interested.

One assignment in the class was to choose a form –a Spanish-language soap opera, a game show, a text message, you name it –and create a play using that form. I chose to portray an incident that happened during my internship here at Easterseals in the form of a “Dear Boss” letter. We performed that piece Saturday. Whitney stole the show.

My play had a surprise element to it, and now that we’ve performed it on stage I can share the screenplay. You already know the ending: I’m still here!

Dear Boss

by Beth Finke

Entire letter is read by narrator, not Beth. Narrator can be on or off-stage as long as the audience can hear them. Scene opens with Beth sitting on chair facing audience, a cloth zippered bag is on the floor to her right. Whitney the Seeing Eye dog is lying calmly at her feet.


Signing the production helped to make it accessible to all.

Narrator: Dear Boss,

I am writing to apologize for my behavior at the bar last Friday.

I was very moved by the invitation to join you for happy hour at your favorite local bar, and am mortified to think my actions at Jake’s Pub embarrassed you.

Let me try and explain.

Before we left the office last Friday, I searched for my Seeing Eye dog’s bowl under the bathroom sink. It was gone. Cleaning staff take it by mistake? It was 3 o’clock. She had to eat. I spilled her zip lock bag of dog food right onto the floor in the bathroom stall.

Beth takes her Seeing Eye dog’s harness off, spills a Ziploc bag of dog food onto the floor, and Whitney the Seeing Eye dog eats as narrator continues to read letter.

Narrator: “C’mon! C’mon, hurry up!” I wanted her to finish before someone came in and caught her licking the bathroom floor.

We do have some pride, after all.

Narrator waits for Whitney to stop licking crumbs from the floor, then continues to read letter. Beth buckles her harness back on to Whitney as narrator reads the next lines.

Narrator: Whitney finished her food, I buckled her harness, we headed downstairs, piled into a cab with you and headed to Jake’s. What a thoroughly modern working woman I was, meeting my boss for cocktails at happy hour!

Beth stays in her seat and Whitney the Seeing Eye dog positions herself down in front of Beth again. They remain like this for the rest of the play.

Narrator: One drink led to another. I started getting hungry. Jake’s didn’t sell food. Not even beer nuts. I reached down into my bag, felt for my pouch of almonds, set them on the bar and started to munch.

Beth does all that as narrator reads those lines and starts to gag and fumble frantically for a napkin out of her bag.

Narrator: That’s why it had taken my Seeing Eye dog so long to eat her dinner in the bathroom stall. I’d given her my pouch of almonds.

I’m guessing you’ve seen a lot at Jake’s Pub. But until last Friday, you’ve likely never seen ANYONE belly up to the bar for dog food.

I hope you can forgive my behavior and will allow me to complete my six-month internship.


Beth Finke

Interactive Community Intern


People with Disabilities Take the Stage Tomorrow at Chicago’s Victory Gardens Theater

Public speaking comes fairly easy to me. Acting on stage does not. But that’s exactly what I doing at Chicago’s Victory Gardens Theater, 2433 N. Lincoln Avenue t,omorrow August 13. at 2:30 p.m.

My class: (Clockwise - Andrew Lund, Beth Finke, Kathleen Guillion, Rukmini Girish, Michele Lee,, Whitney the Seeing Eye Dog, Grishma Shah) Courtesy Neo Futurists.

My class: (Clockwise – Andrew Lund, Beth Finke, Kathleen Guillion, Rukmini Girish, Michele Lee,, Whitney the Seeing Eye Dog, Grishma Shah) Courtesy Neo Futurists.

Some back story. Earlier this year I attended one of two accessible performances of Too Much Light put on by the Neo-Futurists. The Neo-Futurists are a collective of Chicago writers-performers “dedicated to creating honest, unpredictable theatre,” and in Too Much Light productions cast members attempt to perform a perpetually rotating list of two-minute plays in 60 minutes.

After the success of their two accessible performances this year those honest and unpredictable Neo-Futurists took things one step further. They used funds from grants they’d received from The Chicago Community Trust and Alphawood Foundation Chicago, and teamed up again with the Victory Gardens Access Project, to offer their popular “Intro to Too Much Light play writing program” in a class accessible to performers and writers with and without disabilities. The class was offered free of charge. I couldn’t resist.

The hope was that half of the participants would identify as having a disability. The Neo-Futurists achieved their goal. In fact, we outnumber the others: of the seven performers, Two use wheelchairs, I am blind, and one uses a prosthetic arm.
Over the course of ten three-hour sessions every Saturday (we started on June 4, 2016) the seven of us have:

  • explored the process and tools needed to create a two-minute play
  • followed the Neo-Futurist tenets of honesty, brevity, audience connection and random chance to write plays from our own life experiences
  • examined specific play formulas and styles that are similar to plays performed in Too Much Light
  • pitched a few of our plays to teachers to have them choose which ones would be performed tomorrow

These productions used to be called Too Much Light Makes the Baby Go Blind. I’m not sure that they took the Blind word out because I am involved, but I must say, I prefer the shortened title.

And while we’re mentioning that blindness of mine, I need to tell you that losing my sight some twenty-odd years ago left me with a unique version of paranoia. While I don’t mind people looking at or listening to me when I’m sitting or standing still (like when I’m giving a talk), the thought that people might be watching me attempt a task — even one as simple as finding a doorknob — fills me with anxiety.

I started waking up Saturdays wondering why the heck I signed up for this thing. The commute to Victory Gardens isn’t easy, days off work are precious, I stink at memorizing lines, and I hate having people watch me perform.

I liked learning about play writing, though, and every week I grew more fond of our teachers and my classmates. Most of them have acted before. It was a treat to experience their work, and hear it improve from week to week.

I stayed in class, and was determined to keep news of this tomorrow’s performance a secret from my friends. But then last Saturday we had our dress rehearsal.

That's me in the spelling bee piece.

That’s me in the spelling bee piece.

I have speaking parts in a play one classmate wrote about a spelling bee and in one another classmate wrote about a trip overseas. Whitney does not have a speaking part (Seeing Eye dogs are not allowed to bark). She plays a major role in a play I wrote about the internship at Easterseals Headquarters that led to the job I do here now, so her name is in the program on the cast list: she’s Whitney the Seeing Eye dog.

The four of us with disabilities wrote some plays that address accessibility, and many others that don’t mention it at all. One thing the plays have in common? They’re all pretty good.

So, I changed my mind. Everyone should come tomorrow.

The performance tomorrow won’t go any longer than 45 minutes and will feature live captioning and American Sign Language for people who are hard of hearing and audio headphones for people who want the action on stage described. Victory Gardens is wheelchair accessible, and a touch tour of the stage and props will take place ahead of the show at 2 pm for anyone interested.

The play starts at 2:30 tomorrow, so if you live anywhere near Chicago please come experience it for yourself. No need to RSVP, and no need for tickets, either: it’s free!


Become a part of the Easterseals advocacy family

Easterseas Nevada delegation meeting with Rep. Dina Titus in her office in Washington DC.

Easterseas Nevada delegation meeting with Rep. Dina Titus in her office in Washington DC.

Easterseals is proud of our long history as a leading advocate for people with disabilities at the federal and state level. We have a great team in Washington, but the real power of Easterseals advocacy is the voices of people with disabilities, families, staff and supporters that we are able to rally to help educate legislators about the needs of people with disabilities. In this election year, and every year, it is critical that the needs of people with disabilities are kept front and center in policy debates.

We need your help. One of the best ways you can help Easterseals be a voice for people with disabilities is to sign up here to get Easterseals alerts and join Easter Seals’ advocacy network. You can help by asking your friends and family to sign up to be a part of the network as well.

By becoming a part of the network, you will get the latest news on issues affecting people with disabilities and access to easy-to-use on-line alerts that let you get timely information to members of Congress.

You will also get a copy of the monthly policy update that we provide to all Easterseals affiliates. Our monthly Washington Updates highlight policy activities in Washington, D.C. that affect people with disabilities.

I promise you won’t be overwhelmed with messages, and I also promise you will be an important part of protecting the independence of people with disabilities — thank you for your support.


Pokémon Go Helps Brothers with Autism Connect with Their Community

Brothers with autism Justin and Ryan

Left Photo: Justin (left) and Ryan (right). Middle Photo: Infamous Pokemon ball. Right Photo: Justin (left) and Ryan (right).

At the beginning of July, you may have noticed an unusual number of people navigating through neighborhoods with their phones held high, laser-focused on their screens, cheering “Gotcha!” and making flocks of pigeons everywhere flee in a panic. It’s all because of Pokémon Go, a free augmented reality game where players use their phones to search for and catch Pokémon all over the world.

Recently, the game has garnered a lot of attention in the media, both positive and negative. One of the positive aspects of the game – and an aspect that especially excites us – is the way people with autism spectrum disorder and other disabilities are connecting with the game.

Theresa Forthofer, President and Chief Executive Officer of Easter Seals DuPage & Fox Valley, and mom of three to Ryan, Emily and Justin, has seen this connection firsthand. Her two sons, Ryan (23) and Justin (16), both have autism spectrum disorder and myotonic muscular dystrophy (MMD). Typically, they enjoy playing video games with each other and hanging out indoors, but since downloading Pokémon Go, Theresa noticed that the boys enjoy heading outdoors and are making friends in the neighborhood.

Ryan first downloaded the app onto his iPhone after hearing about it from his personal support worker and shared the game with Justin.  Later, when their grandfather announced that he would be taking the dog for a walk, Justin and Ryan were eager to join him, hoping to find those elusive Pokémon on the one-mile trek to the park. Theresa called this change in the boys’ routine and behavior nothing short of “miraculous”.

Easter Seals DuPage & Fox Valley Occupational Therapist, Brittany Diasio, finds the game is helping children and adults with important judgement and spatial awareness skills too. “Being aware of the space around you, while interacting within the app to navigate new areas, are great skills for all to work on. It takes judgement to know when to cross the street at the right time and the spatial awareness to understand your relationship with objects around you, including Pokémon.”

Soon after their first trek with the game, Ryan and Justin joined about a dozen kids in their

neighborhood on a collective hunt for Pokémon. They spent two hours roaming through backyards in the hot summer sun playing and chatting about their recent captures.

“For them to be part of something fun like that was pretty unique,” Theresa said. “It’s exciting and inspiring because it’s an opportunity to show our neighbors that Ryan and Justin like a lot of the same things they do, but they may not be able to do everything in the same way.”

The first week was literally game-changing for Ryan and Justin as they began to interact with the people

around them, and Theresa and her husband encouraged their sons to go out and “catch em’ all”, downloading the game themselves.  The family fun has continued since then, with the game playing a key role in the boys’ interaction on a recent family camping trip.

“[Pokémon Go] gives them an ability to relate to their peers and everyone around them in a really fun, natural way,” Theresa said. “It’s easy to accept differences when you have something in common. Pokémon brings that common element into play.”


Fashion’s newest frontier? According to the New York Times, it’s people with disabilities

Erin Hawley talks fashion.

Erin Hawley talks fashion.

When I was a little girl, I wanted to be a fashion designer. I’d draw the kind of dresses and chic ensembles that I wanted to wear — outfits that I would probably never see in stores for people like me. Finding accessible styles that worked with my body shape and wheelchair use was always a problem.

As an adult, I still have trouble finding age-appropriate clothing that fit my small frame and appeal to my personal style. I’m 32 years old, and I don’t want to wear Elsa and Anna t-shirts (even though I love Frozen).

While I never realized my dream of fashion design (my professional interests lead me elsewhere), I still hold on to that desire of making clothes that work for me. And not just for me, but for thousands of other people with disabilities who have trouble accessing fashion. A recent New York Times article examines some positive trends in the design world. The article explains how designers are only recently taking notice of the need for accessible, stylish fashion for people with disabilities. An excerpt:

Solving for the disabled and the displaced has in many ways been the final frontier.
Though advances in medical technology and legislation have created situations in which people with long-term conditions are increasingly able to be part of the work force and quotidian life, the implications — they need clothes that allow them to do so while also accommodating their physical reality — have taken a while to sink in.

Modified clothing has been out there for some time, but the styles are usually expensive, hideous, in limited production, or a combination of all three. It’s hard to find items with magnetic snaps, comfortable seams, elastic waists, or sensory-friendly wear.

Folks with disabilities and their loved ones are sometimes forced to come up with fashion hacks to make styles work for them. But those work-arounds expose ways big-name designers can make their designs for a broader audience. I believe it is important for us to showcase those adaptations, and for designers to reach out into the disability community for ideas.

What we need are commercial styles that appeal to a wide-range of personal clothing preferences; this desire was highlighted during Easterseals Thrive’s disability and fashion chat on July 20.

Our discussion that day on what it means to be a fashionista in a society that doesn’t always consider the accessibility of style was eye-opening and clear in its overall theme — people with disabilities want to look and feel good in what we wear and how we express ourselves. We should have the ability to share our personalities with the public in what we put on our bodies, but right now, we are limited in our choices.

What I took away from that New York Times article is the way industry is slowly including accessibility seamlessly into their work. Designers should consider disability not as an afterthought, but as an integral part of their design process; I made the same case in my Pokemon GO blog post last month about accessible technology.

While certain stores or designers understand this need, there is still a long way to go before we see accessible styles in every mannequin display. I hope one day fashion will truly be for everyone.


Entertainment That’s Helping Society Gain New Perspective on Disability


Easterseals CEO Randy Rutta and TV producer Jonathan Murray.

I’m pleased to co-author a piece today, on the 26th anniversary of the Americans with Disabilities Act, with award-winning television producer and friend of Easterseals, Jonathan Murray. Jon is credited with inventing the modern reality television genre. His critically acclaimed series, Born This Way, returns for a second season tonight on A & E. Read the post in its entirety on my Huffington Post blog.

This is the true story of seven friends, navigating the typical trials and tribulations of young adulthood—from first kisses and signing a lease to landing that big job. They also happen to have Down syndrome.

And they’re thriving. They’re leaving their childhood homes, holding jobs, starting families and living their best lives. This isn’t radical thinking. It isn’t inspiring. It’s just reality.

friends laughing

The second season of “Born This Way” starts tonight on A and E.

And it’s a reality 1 in 5 people in our communities are living. Although disability is a normal part of life—touching us all at some point—there’s a significant need for stories that amplify the voices of this population. Not just to reflect the diverse society we live in, but to also promote social change

For example, many people in the disability community want and are capable of jobs and independence. Yet, the unemployment rate among Americans with disabilities is nearly twice that of people without disabilities. The disability community is an untapped resource for businesses looking for skills-based, work-ready employees. Can the entertainment industry help society get past the stigma and gain a new perspective about people with disabilities and their potential? Read more…



We’ve come a long way, baby — the ADA turns 26 on Tuesday

Blind justiceI started losing my eyesight in 1984, when I was 25 years old. At first I didn’t use a white cane or a guide dog. I quit driving or riding my bike, but I could still see well enough to walk to my job as the Assistant Director of the Study Abroad Office at a Big Ten university.

Most of my work back then involved counseling college students on study abroad options — I could have done that with my eyes closed! As my eyesight got worse, though, I started making mistakes in the office. I still remember spilling grounds all over the floor on my way to make the morning coffee. I had to sit close to my computer screen to see the words. I ran into tabletops.

At some point my boss took me aside and told me I wouldn’t be going to the annual convention with my colleagues. “You’ll embarrass the office,” she said. Months later, my contract was terminated.

The Americans with Disabilities Act (ADA) celebrates its 26th anniversary tomorrow, July 26, 2016. The landmark federal legislation was passed five years after I lost that job. Designed to improve access to services and employment opportunities, it was intended to eliminate illegal discrimination and level the playing field for people like me who live with disabilities.

I am totally blind now, and I use speech software to moderate this blog for Easterseals. I’ve had two books published, and have another one on the way. I record pieces for public radio from time to time, and I lead four different memoir-writing classes for older adults in Chicago every week.

It’s true we have a long, long way to go before hiring practices are totally fair to those of us who can’t see, use wheelchairs, or have a myriad of other disabilities. Things are moving in the right direction, though, and thanks to the wisdom and determination of the many people who banded together to get the ADA passed 26 years ago, we have the law on our side.