Last chance to witness glory: Paralympics end Sunday in Rio

by Beth Finke

Last month I happened to catch a story on Weekend Edition and heard NPR’s Rachel Martin talking with Lisa Fenn, the author of Carry On: A Story of Resilience, Redemption, and an Unlikely Family. The two athletes Lisa Fenn profiled in her book and in a documentary for ESPN’s Outside the Lines program were there at the interview, too: Dartanyon Crockett and Leroy Sutton.

The story really caught my attention, and I’ve been watching for news of Dartanyon Crockett at the Paralympics in Rio.

Okay, I’ve been listening for news of his judo matches there. Because, just like Dartanyon Crockett, I am legally blind.

Crockett was one of the best wrestlers on his high school team. Leroy Sutton lost both legs in a train accident when he was 11 years old, and when Leroy transferred to Dartanyon Crockett’s high school he took up wrestling. Dartanyon Crockett carried him to practices and wrestling meets, and they took some high school classes together, too, always sitting side by side. “Dartanyon would get up to sharpen Leroy’s pencils,” an ESPN story last month reported. “Leroy ensured Dartanyon could read small print.” Both students graduated from a high school in Cleveland where fewer than 40% go home with a diploma.

Leroy Sutton went on to college from there, and Dartanyon Crockett moved to the Olympic Training Center in Colorado Springs after coaches there recognized his natural athletic abilities and invited him to learn the Paralympics sport of judo.

All their hard work paid off. Last Saturday, September 10, 2016, Dartagnon Crockett won his second Paralympic Judo bronze medal (he won a Bronze Medal in judo during the 2012 Parolympic Games in London, too).

NBC Olympics have been presenting more than 70 hours of coverage of the Rio Paralympic Games across NBC, NBCSN, and the NBC Sports app –that’s an increase of 64 hours from the London 2012 Paralympic Games. The -by-play commentators, analysts and reporters are all former Paralympians. The Closing ceremony for these 2016 Paralympic Games is Sunday, September 18. Tune in and watch — or listen. You’ll be rewarded.

Executive Producer Jon Murray talks with us about Emmy winning ‘Born This Way’

by Bridget Hayman

Television producer Jonathan Murray

A big congratulations to the groundbreaking show, Born this Way, which won an Emmy this week for best unstructured reality show!  The show, now in its second season, airs on Tuesday nights on A&E and focuses the lives of a group of young adults with Down Syndrome and their families.

Easterseals sat down with Executive Producer Jon Murray to talk about his vision for the show and what he’s learned from the cast. Check it out.

5 Reasons to Watch the Paralympics

by Sydney Palese

This summer, the spirit of the Rio 2016 Olympics was felt in full force. We sat in front of our TV and computer screens, watching as some of our country’s greatest athletes broke records, won medals, and displayed excellent sportsmanship. No need to feel the post-Olympics blues, now it’s time to tune in to the 2016 Paralympics!

From September 7-18, watch incredible athletes with disabilities participating in sporting events like sailing, wheelchair fencing, wheelchair rugby, powerlifting, and rowing. Here are five reasons to watch the Rio 2016 Paralympics:

1. This year, the U.S.A. will send its largest delegation of athletes to the Paralympics ever. The Paralympics are growing every year, which means more and more people with disabilities are getting outside of their comfort zones and breaking down barriers. Meet the athletes:

https://www.youtube.com/watch?v=i32aRVy9OcI

2. Track and Field events will be full of action, representation, and firsts. It’s no surprise that track and field events are highly anticipated in the months leading up to the summer Olympics and Paralympics. This year, the track and field events will feature the largest range of disabilities and the largest team for the U.S.A. with 76 athletes. Be sure to watch out for Grace Norman and Allysa Seely, who will compete in both track and field events and the newest event, the paratriathlon.

3. 35 veterans are on team U.S.A. As supporters of veteran reintegration, we are excited to see that there are 35 military athletes on Team U.S.A. While most of these athletes are veterans, four are still active duty. Branches of the military represented include the Army, Marine Corps, Navy, and Air Force. Be sure to check out the men’s volleyball team, where five of the 12 players are veterans. Other sports with military athletes include swimming, archery, shooting, and paratriathlon.

4. NBC added 60.5 more hours of coverage of the Paralympics. With disability in the spotlight in shows like Born This Way and Speechless, it’s clear that the more people with disabilities are given a voice, the more inclusion is possible. That’s why we’re so excited that NBC and NBCSN will air 66 hours of the Paralympics. We think Sir Philip Craven, the president of the International Paralympics Committee said it best: “This is tremendous news for sports fans too, many of whom will be able to watch a Paralympic Games live for the first time.” (via)

5. Everybody is represented. The tallest Paralympian is 6’7” and the shortest is 3’ tall. Paralympians competing have visual impairments, intellectual disabilities, prosthetic limbs, and an array of other disabilities. So many people are represented on this international stage. And we’re excited to cheer them on.

Disabled and fighting for the right to vote

by Beth Finke

During every election cycle I am astonished to hear about the percentage of average able-bodied Americans who “don’t bother” to vote. If the story I heard today on NPR’s Morning Edition program doesn’t inspire them to get to their polling places in November, I don’t know what will.

The story was about David Rector, a former producer for NPR who lost his ability to walk or speak after a brain injury. David’s fiancée was appointed his legal guardian afterwards, and the appointment of a legal guardian meant that Rector lost his right to vote.

Rector recently went to Superior Court in California to file a request to have his voting rights restored, and his fiancée said he was still able to communicate his wishes to a court clerk – he used the electronic voice on his eye-tracking device to say “I, David Rector, want my voting rights restored immediately.”

Under California law, individuals with guardians have to express a desire to vote to be able to do so. David Rector is one of more than 30,000 Californians — and an unknown number of others in the U.S. — who’ve lost their voting rights under state guardianship laws. Those laws vary widely around the country. The NPR report said 11 states do not disqualify individuals from voting because they have a mental disability, but individuals under guardianship in other states are routinely barred from voting. From the NPR story:

“The problem with those laws is that a determination of guardianship or competence really has nothing to do with someone’s ability to vote,” says Jennifer Mathis, director of policy and legal advocacy at the Judge David L. Bazelon Center for Mental Health Law in Washington DC . “They have to do with someone’s ability to ensure their basic health and safety needs.” She says just because someone can’t do one thing, doesn’t mean they can’t do another.

In some states, individuals who have legal guardians must show they have either the ability or desire to cast a ballot before being allowed to do so, which can mean voters with disabilities are held to a higher standard than everyone else. “Those people end up having to answer questions like: Who’s the governor? Who’s the president? Who’s the mayor? Why do you want to vote? How would you vote on a particular issue? And those are exactly the type of questions we never would impose on voters without disabilities,” Mathis said, arguing that this violates the Voting Rights Act.

Rector’s legal guardian said he is very eager to vote this November. He spends much of his time following the news on TV and radio, and his legal guardian says he is better informed than many voters. Now, they just hope they’ve convinced the judge.

Tips for wheelchair-friendly train travel

by Bridget Hayman

The accessible sleeper cars on Amtrak are roomy and comfortable.

Are you traveling sometime soon? With the taste of fall already in the air, it may be tempting to just stay home and kick back. But before you spend your holiday weekend watching train video footage on Netflix thanks to the latest ‘Slow TV’ phenomenon, I highly recommend planning an actual train trip instead!

My husband, George, and I packed our bags a few weeks back, made sure we were well stocked with activities, snacks, and the perfect soundtrack, and we climbed aboard Amtrak’s “City of New Orleans” to journey from Chicago to New Orleans.

It was our first overnight train trip, and I was pleasantly surprised to discover how wheelchair friendly the train is for passengers like me.

We reserved a wheelchair accessible bedroom, complete with an accessible restroom.  Our tickets were affordable, and meals are included.  The meals, which were really tasty, were delivered to us by an attentive porter because I wasn’t able to get to the dining car – it’s upstairs and the train aisle ways are too narrow for wheelchair access. Still, I didn’t feel like I was missing anything, and it was nice having a private, fairly roomy, quiet car to ourselves. The beds were pretty comfy too. Although George, who rolled around on the top bunk, would tell you a different story.

Speedy travel it was not – our one-way trip took roughly 17 hours — but it sure was an adventure! I even had the time to try my hand at learning chess. Playing chess is going to take some more practice, and I plan to get some in on my next train trip.  Trust me… the real thing’s even better than Slow TV!

Sound interesting? Here are some tips for planning an accessible train trip:

• Call Amtrak to make your reservation instead of booking it online. The agent will have questions about everything from wheelchair equipment to addressing special needs that aren’t accounted for on the Amtrak website.
• Book early! The handicapped accessible “H” cars – or bedrooms — are very popular.
• You don’t have to check your bags. There is plenty of room for a suitcase or two on the racks outside of the accessible sleeper car. That said, it’s nice to have an overnight bag handy in the car itself.  And if you want to check your bag, you must do so at least one hour before departure.

If you have train travel tips of your own to share, we’d love to hear them. Leave us a comment.

Here’s to the super-humans

by Beth Finke

An opinion piece in Newsweek this week boldly claims that the Olympics in Rio were just a prelude, and the Paralympics are the real sporting event of the summer of 2016.

Just like the Olympic Games, the Paralympic Games show athletes who battle fatigue, their opponents, and the odds so that they can bring home medals for their countries, but the Newsweek piece says Paralympians have to do even more. They battle “against the challenges posed by ‘normality’ itself.”

The opinion piece was written by John Head, a senior lecturer in prosthetics and bio-mechanics at the University of Salford in England, so it comes as no surprise that he focuses on the efficiency of the new-fangled prostesis the athletes wear. He introduces us to Van Philips, an amputee engineer who examined the key components of running and decided to create a prosthesis that doesn’t look like a human foot. From the article:

His resultant “flex foot” or “blade” became synonymous with the Paralympic sprinters and runners who epitomize the modern Paralympians. Made from layers of laminated carbon fibre, and presented in that now familiar “C” shape, the “flex foot” could absorb large amounts of impact energy, at the beginning of the gait or running cycle, which would protect the prosthesis user from painful forces around their residual limbs.

It could also store and release this energy at the end of gait cycle during what is called the “push off” phase, literally “springing” the user forward along the track.

The result is a foot that redefines the possibilities of prosthetic running, and I must say, appreciated that the author went out of his way to remind sports fans that these fancy feet and other prosthetic devices are only as good as the people using them. He writes, “It is only in conjunction with a dedicated, elite, talented athlete that we can see the stunning performance outcomes that both enthrall and amaze.”

You don’t have long to wait to watch these stunning athletes –the 2016 Paralympic Games in Rio start next week. Let the games begin!

Two very different disabilities=one very happy marriage

by Beth Finke

I 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

by Beth Finke

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.

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

by Beth Finke

Every 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

by Beth Finke

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.

Sincerely,

Beth Finke

Interactive Community Intern