Thankful for us, the U.S.

Ben Trockman

Ben Trockman

During this time of great constitutional debate and discussion within our country, I’m reminded of my gratitude for the First Amendment of the United States Constitution. It reads:

“Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.”

Unlike people in many other countries in the world, citizens of the United States are granted the freedom to exercise free speech. Why is this particularly important to me, specifically in regard to disability inclusion? Let’s think back 100 years ago. My grandmother tells me the story of my great-grandfather Jimmy, who had polio and attended high school in the 1910s. Prior to Jimmy’s graduation, the principal of the school told my great-grandfather and his parents that they should “find their son a job in a back room where no one could see him.” This was the reality people with disabilities were facing in the early 20th century; a principal encouraging parents to “hide” their child from the world.

Now lets fast forward to the “Crawl on Capitol Hill,” prior to the passage of the Americans with Disabilities Act in 1990. Hundreds of passionate disability advocates peacefully protested by abandoning their wheelchairs and walkers, and pulling their “disabled” bodies up the steps on Capitol Hill.

This vivid act of “free speech and/or peaceful assembly” led to unprecedented awareness of disability issues. The peaceful protest transformed the thinking of our country — and the leaders of our country — regarding people with disabilities. The ADA was signed months later in 1990 and has been a landmark piece of legislation for the disability community ever since.

Disable demonstrators crawl the Capitol steps. Photo: Action for Access, Tom Olin

Demonstrators with disabilities crawl the Capitol steps. Photo: Action for Access, Tom Olin

The purpose of this blog post is not to concentrate on one specific incident, but to look back, reflect and appreciate the rights that we have as United States citizens to express our passions, thoughts, ideas and concerns whether we express them by speaking, blogging, tweeting, publishing YouTube videos, or Facebook.

Without the ability to speak, assemble, protest and advocate, we may not have made it to a time where I (a 28-year-old quadriplegic) could have a full-time position at Old National Bank, one of the greatest employers in the tri-state, constantly speaking in the community, and feeling as though my opinions are always important. Without the First Amendment, I may not have had the opportunity to be employed. I may not have had the opportunity to advocate. I may not have had the opportunity to graduate.

Who knows?

One thing I do know is that we live in the greatest country in the world, where we have the opportunity to, in the words of James Dean, “dream as if you’ll live forever, live as if you’ll die today.”

For that, I am grateful.


Grateful for Goalball

I am pleased to introduce Sean Edwards as a guest blogger today. After a retinal detachment compromised the vision in his right eye when he was nine years old, doctors prohibited him from participating in sports or any other physical activity that might cause another detachment. A decade later, Sean is attending Purdue University and participates in Goalball, a sport he is grateful for. Here’s his post.

by Sean Edwards

Goal Ball Game

Erik Rodriguez of the Indy Pendants throwing the ball down the middle of the court.

I never really found sports interesting as a kid. I could watch football here and there if family was watching it. My dad even got me into watching hockey when I was 15 or so. But I couldn’t play those sports. Ha, me try to see a small, icy rubber disk that can be launched around a rink at more than 90 miles an hour? Good luck.

The script sort of flipped my junior year of high school. A resource teacher that year went out of his way to show me this unique sport made for people with a vision disability and assured me I’d be able to participate. Players all wear blindfolds, and the ball has bells inside to hear where it’s coming from. My resource teacher went on and on, and when he finally finished explaining I had only one question: what’s this game called?


Created after World War II as a rehabilitation method for veterans who had lost their sight in combat, Goalball is a 3-on-3 team sport that combines an offense like bowling with a defense of soccer or hockey. Teams of blindfolded players take turns rolling a hard-rubber bell-filled ball down the court at their opponents. When defending, a team will have to listen for where the ball is coming from and dive out to block the ball with their body, preventing it from entering their goal. The team with the most goals at the end of the 24-minute game wins.

We started a Goalball club at my high school and I began exploring various strategies. I learned that playing proper defense limited chances of taking a hit to the head. It didn’t take long for me to discover I did in fact have a competitive fire buried inside me.

And now I’d found a way to release it.

Since graduating from high school I’ve been attending Purdue University, and during my sophomore year at college it occurred to me that hey, we managed to create a Goalball club at Carmel High School. Let’s do it at Purdue, too.

On April 23rd, 2016, the newly-founded Purdue Goalball organization hosted its First Annual Regional Goalball Tournament. Six teams from various cities, including Indianapolis, Chicago, Detroit, and even Cincinnati, traveled to compete in West Lafayette. I witnessed first-hand what that tournament meant to the athletes who participated. They weren’t simply enjoying a chance to get physical activity — they were grateful for the opportunity to compete.

It was on that day last April that I knew. This was it, this was what I was looking for all along. I switched my major to Sociology with a minor in Disability Studies. My goal is to someday work towards raising awareness of adaptive sports and make more options and opportunities available for athletes with disabilities to participate in them. With that spirit in mind, we’re planning to host our second Goalball tournament at Purdue in April 2017.

Sometimes in life, you don’t really know what you’ve got ‘til it’s gone. And other times, you don’t really know what you could have until it falls right into your lap. I’m honestly grateful to have learned about Goalball. Not only do I appreciate it for giving me the chance to compete, but it has opened up my mind to who I want to be.


Grateful…for autism?

FamilyIt has been eight years since we started our amazing journey with Scottie as the Easterseals 2008 National Child Representative. Time really gets away from us, but we frequently talk about the trips that we took and the amazing opportunities we had to meet and speak to so many folks about what Easterseals and autism have meant in our lives. We occasionally still get a chance to speak at some Easterseals events, and it is always an honor.

This month, as we prepare for another Thanksgiving Day together as a family, I am grateful for my busy family, our health and all the help, love, hope and opportunity that Easterseals has brought into our lives.

This time of year, I find myself reflecting on what I am most grateful for. I have so many things in my life that have truly blessed me. One of the most amazing blessings? Having an autistic son.

Now, I can’t say that I’ve always felt that way. Scottie is a teenager now and prefers being called Scott — he doesn’t mind “Scottie,” but he’s grown up! As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis.

Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted, and by watching him grow and learn, I have learned so very much.

It’s simply amazing.

Sometimes, I wonder what life without him would be like, or even life without him being autistic, and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could.

Being selected as the Easterseals 2008 National Child Representative not only gave a lot more people an opportunity to know and love our wonderful son Scott when he was still a little boy, but it gave us
— as a family — a chance to give back. I currently serve as the chairperson of our local Easterseals board of directors — we give back to Easterseals as an organization because they have given us more than words could ever express.

Staying involved with Easterseals also gives us a chance to offer hope to other families facing the darkness of autism. I hope that somehow, by seeing and hearing our story, there will again be light.

So, as we gather to celebrate this Thanksgiving, I will give thanks for Scott and his sisters, Sarah and Carly, as well as my husband Shannon and all of our extended family — including our wonderful Easterseals family.


Our new Illinois senator uses a wheelchair

WheelchairThe 2016 presidential election is getting so much attention that some of the more interesting state and local races seem to be somewhat overlooked. The Senatorial race here in Illinois is a good example. The votes have been counted, and our next senator from Illinois will use a wheelchair.

Democratic Senate candidate Rep. Tammy Duckworth served in Iraq and lost both legs when a rocket-propelled grenade struck the helicopter she was co-piloting in 2004. After her victory over incumbent Senator Mark S. Kirk in yesterday’s election, Tammy Duckworth will be only the second woman to serve as senator of Illinois.

An article in the Chicago Tribune during tammy Duckworth’s campaign pointed out that running a Senate campaign involves lots of travel and complicated logistics. From the article:

Duckworth said she and her staff have a pre-event checklist to make sure the site is up to their standards — and that means making sure even the bathrooms are wheelchair accessible.

“I don’t go to any place that isn’t accessible even though I have artificial legs that I can walk in; it’s on principle,” she said. “If someone in a wheelchair can’t get in it, I’m not going to do an event there because just because I can get in there doesn’t mean somebody else can.”

The article said Duckworth often heard from voters who question her ability to serve. A question about using a wheelchair in public during the campaign came up when she first ran for Congress. “I’m not ashamed I’m in a wheelchair. I earned this wheelchair,” she said. “I’ve always insisted it’s not something that we hide.”

Congratulations to Tammy Duckworth — we look forward to having someone like you represent us in the U.S. Senate in 2017.


Chance the Rapper wants us to vote: What to do if you have any problems tomorrow

Chance the Rapper’s giving a free outdoor concert later this afternoon here in Chicago along with Twin Peaks, Malcolm London, and Chance’s brother Taylor Bennett. It’s for a good cause: Chance got these acts together to remind people to vote Tuesday, if they haven’t already. I’m a fan of Chance the Rapper, and I’m a fan of voting. I’ll be there.

Chance is on the GOTV case.

Chance is on the GOTV case.

I wrote a post here last week about times I’ve had problems accessing the talking voting machines at our local polling place in the past, and though I’m hoping for the best tomorrow, I’ll be heading to the booth armed with special phone numbers just in case.  Easterseals has put together a comprehensive resource for people with disabilities to use on election day, which includes a wallet card with important numbers on it for you to take with you to the polls. Take a look.

These are some of the hotlines that’ll be ready to help people with disabilities who have problems voting:

  • U.S. Department of Justice, Civil Rights Division, Voting Section: for complaints related to ballot access, call 800-253-3931. TTY: 877-267-8971
  • Lawyers’ Committee on Civil Rights under Law Election Protection Hotline: For help with disability/access issues, call 866-OURVOTE (866.6878683).

Here in Illinois, Equip for Equality will have advocates available by telephone to answer questions about any voting problem people with disabilities might experience. You can call them when the polls are open tomorrow at 800.537.2632, or TTY at 800.610.2779.

In some previous elections my issue with the voting machine couldn’t be resolved, and my husband, who can see, had to sign an affidavit to be able to help me with a written ballot. Voting specialists on these hotlines recorded details and referred my issue “to the proper authorities for follow-up action.”

My hope is that the follow-up worked, and that things go smoothly tomorrow. Not only for me, but for all of us at the polling places. And if not, it is reassuring to know there are people on these hotlines ready to help.


Blind, but entitled to cast a ballot — op-ed piece in the New York Daily News

Thanksgiving is coming soon, and many of the posts we’ll be publishing on the Easterseals national blog this month will be devoted to the people and things we are grateful for. What better way to start than with an op-ed piece published in the New York Daily News this week?Much to my happy surprise, they didn’t edit out my favorite line of the whole thing: “Most of us aren’t fortunate enough to have a spouse named Mike.” This month –and every month of the year –I am grateful to my husband, Mike Knezovich, for adjusting to my blindness along with me. The op-ed explains — here is Blind, but entitled to cast a ballot” in its entirety:

By Beth Finke

Monday, October 31, 2016

I Voted Today stickerI lost my sight in 1986, to a rare condition called retinopathy. By then I’d already voted twice, in national elections, as a fully-sighted person.

Struggling to adjust to blindness, I was determined not to lose my ability to vote — not just casting a ballot, but the act of voting itself.

Going to the polls is essential. There’s no substitute for the feel of a voting device in your hand or the sound of your vote actually registering, a certainty that voting by absentee ballot can’t provide.

For three decades now I’ve searched for a voting experience equivalent to the one I enjoyed when I could see.

It’s a fair expectation. People who are blind are guaranteed that right by law — many laws, in fact, including at the national level alone: the National Voter Registration Act, the Voting Rights Act, the Help America Vote Act and the Federal Rehabilitation Act.

The technology has existed for many years, too. Text-to-speech software translates the candidate selections on the ballot into spoken choices; a special keypad then enables blind voters to choose their candidates by touch, with the selections confirmed by voice again before the ballot is cast.

Some places — like New York City — have more or less that setup, with ballot-marking devices that allow people who can’t see to make their choices in private.
But in many places, blind people can’t choose candidates on their own. The systems may work in theory, but they don’t in practice.

During the last 30 years I’ve made my way to the polls many times, each time hoping to recapture what I felt emotionally, and what I could actually do, before I became blind. What I experienced were more journeys of trepidation than fulfillment, not to mention the convoluted measures needed to approximate an act guaranteed by our Constitution.

We’ve come a long way of course since 1988, when I first voted as a blind person. The technology back then was punch card, so my husband Mike joined me in the booth, selected the candidates for me and placed my hand on top of the stylus so I could physically punch the ballot on my own.

In a subsequent election, Mike was away on business. I made it to the polls myself, but quickly discovered how much assistance I’d need without him. Two judges — one Democrat, one Republican — crowded with me and my seeing eye dog into the tiny polling booth.

I didn’t bother asking them to put my hand on the stylus so I could punch the card myself, just allowed a third party to vote for me with a second third party to witness.

Yes, I cast a ballot, but the experience was invasive and overheard by many.

Text-to-speech software became available in the mid-2000s, and the news coursed quickly through the blind community that we could now vote independently and privately. I live in Chicago, and the city sponsored free trainings at Chicago public libraries. I spent many hours there, getting a feel for the machines and practicing with the buttons on the handheld device.

When I arrived at the polling station in 2008, the technology was in place but no one could operate it. There’d been no training of staff in the sequences needed — enabling the software, activating the audio, even finding the headphones that ensure privacy of selection.

So backwards in time we went. Once again my husband Mike had to sign an affidavit, accompany me to the booth, read the candidates’ names out loud and hear my choices in response, as did everyone else within earshot. The same scenario repeated in 2012 during the national elections.

Next week we again have a national election of great import, and again, my hopes are raised that I’ll be able to exercise the same basic right that sighted people do — to vote in private without public assistance. Millions of Americans with disabilities share this ambition. . Instead, we need to rely on larger systems and resources. “Save yourself the trouble,” some suggest with a shrug. “Vote absentee.”

On a purely technical level, I won’t vote absentee as it’s historically fraught with challenges, including ballots getting damaged or lost, and in many cases not even counted.

It’s the larger imperative that compels me to the polls, however. People need to see me voting. The astonished comments I hear from people waiting with my seeing eye dog and me in queue tell me they really do want me to vote.

Those of us with disabilities can’t let others forget about us. In the not-too-distant past, people with disabilities did stay home, not just on voting day, but perpetually. We can never go back to those days, and voting publicly is one way to ensure we don’t.

Finke is the interactive community coordinator at Easterseals
headquarters in Chicago and the author of two books.


‘If I knew then…’ 5 Tips for Teens with Autism

Kelly and her cat

Guest blogger Kelly Hutchins

Guest blogger Kelly Hutchins shares her five tips for young people with Autism in today’s post… things that she wishes she’d known when she was a teenager. Now a pastry chef who recently completed her studies at the French Pastry School in Chicago, Kelly is eager to share her own experience living with autism and to inspire others to do the same.  In addition to sharing her delectable confections with friends and family, Kelly is an avid cat lover, PAWS volunteer, and self-advocate.

Being a teenage girl is tough. Being a teenage girl on the autism spectrum can be brutal. Here are 5 things I wish I had known when I was in high school.

Everyone around you is just as insecure, especially the bullies.

The most insecure people are usually the biggest bullies. The only reason a person would do that is if they are insecure with themselves. I’m not excusing the actions of bullies, rather I want to reassure people who are bullied that you are stronger than the people who want to bring you down.

The two keys to success are to work hard, and be kind.

Yes, some people manage to bully their way to the top, but they are few and far between. Conan O’Brien once said “If you work hard and are kind, amazing things will happen”.  And I can tell you from personal experience that this is 100% true. The bullies usually don’t make it to the top, and when they do they never stay there. Everyone you meet on the way up, you will also meet on the way down. The people who end up with real success and happiness are the ones who work hard and are kind.

Don’t be afraid to make your needs known.

Making your needs known can be very intimidating, but it gets easier with practice. You may be a minor, but it’s your life, and your future, so you deserve to at least be heard. If you need help with taking notes in class, or if you need testing accommodations, you need to tell your parents and guidance counselor.  Nothing comes of nothing, so speak up, because your needs are important.

Dressing like everybody else won’t make you happy.

Use high school and college as a time to experiment with your own personal style. If there is a time to be wild, it’s now. I spent the first two years of high school trying to look like everybody else and all it did was make me miserable.  The only way to win the game is to stop playing, and start enjoying yourself.

You are stronger than you know.

The things you now see as your weaknesses may very well turn out to be some of your greatest strengths. So embrace who you are, and speak up for others and yourself. You are not a wallflower, you are a beautiful and unique human person. You will be surprised at just how strong you really are, if you give yourself a chance.  Remember that all great people were once teenagers.


Cute wheelchair costume! But who is it for?

Girl in cook costume

Elena’s costume this year is inspired by one of her favorite movies, Ratatouille.

A colleague’s husband wrote a column for the Chicago Tribune about navigating the city as a modern dad on his mundane weekend errands with two kids in tow. In his essay, Jeremy Manier took note of strangers approaching him during the trip and reacting to his parenting by exclaiming “What a Dad!”

It’s in these simple and regular events that fathers often get more praise than mothers because, perhaps, the bar is set low for men. Regardless, Manier dubs these simple acts of parenthood as “What a Dad!” or “W.A.D.” moments. Here’s an excerpt from Manier’s essay:

Be assured, mothers, this is not some self-satisfied father’s lame attempt to horn in on your Day. In fact, after the second time it happened, I started thinking the huzzahs aimed at me actually reflected badly on dads and our iffy history of child care.

If I’d been a mom, no one would have noticed me feeding my infant son with my preschool daughter at my side. That’s what mothers do, right? But being a man, I got credit just for showing up and not losing either kid in the electronics aisle.

Because my young Elena has a very visible disability, I would argue that my W.A.D. moments are even more pronounced than Manier’s. A trip to the grocery store to pick up milk, vegetables, and dinner? “What a Dad!” Flying a kite with my daughter? Total W.A.D. moment. Speaking to the parents in Elena’s class about her disability? W.A.D.

My proudest W.A.D. moments for the last few years have certainly been Elena’s Halloween costumes. I have to admit that I have truly been knocking it out of the park. I found her disability not only as a challenge to my creativity, but also as an opportunity to come up with something witty within the constraints of her mobility.

Elena wasn’t able to sit independently early on in her life, so her first year trick-or treating she came as a lobster in a pot. The next year she was a bag of money stolen from a bank. And last year? I converted her wheelchair into a construction vehicle. She came as a bulldozer.

Elena’s costume this year is inspired by one of her favorite movies, Ratatouille. Continuing my streak of Halloween excellence and creativity this year, I’ve converted her wheelchair to a full stove and oven. Elena will don a chef’s hat and apron while (hopefully) sitting comfortably behind a stove — I made that stove out of wood that fits over her wheelchair.

Elena premiered her costume a few weeks ago at the 2016 Easterseals DuPage and Fox Valley fashion show. The theme this year was Hollywood. After blogging about Elena for the last year, she’s kind of turned into a local celebrity (well, at least in my mind) and we were given a table right next to the runway.

Elena rolled down the runway with her three cousins, two who dressed as servers and one who joined Elena dressed as a chef. Her cousins smiled and waved as they slowly walked down the runway, but I couldn’t help but notice a slight grimace and hint of discomfort on Elena’s face. Clearly, she was uncomfortable in her chair. She was not enjoying the spotlight as much as I thought she might.

The Easterseals fashion show is wildly successful and celebrates children of all abilities, but I wondered. How much was Elena herself enjoying the event? Days before the event she had been experiencing what we call “bad body days” — times when her body just doesn’t listen to her and ultimately causes her pain or discomfort. Was it that? Or was it that maybe, just maybe, she just didn’t want to be a chef for Halloween? I’m not really sure.

What I did realize, however, is that I never asked Elena what she wanted to be for Halloween. Is it an awesome costume? Yes. But for whom? For Elena? Or for me?

I had completely neglected Elena’s opinions and voice. It was then that I realized that my W.A.D. moments were perhaps for myself and not for my daughter.

We tried on the costume last night and she seemed to be happy, so right now it gets the green light for this year’s Halloween. But if she wakes up on trick-or-treat day and decides to be Elsa from Frozen, one of my goofy costumes, or even the eponymous Princess Elena of Avalor, that’s fine, too. Regardless of the choice, I want it to be hers. What a kid!


Halloween costumes with wheelchairs and walkers? Try Industrial-strength Velcro

girl in costume

Rocket girl!

A blog called Ability Hacker published a post linking to ours about Halloween costumes and heralded the merits of industrial-strength Velcro when it comes time to come up with costumes for kids with disabilities and special needs. Post author Amy said that when doing costumes incorporating her daughter’s walker, one of her favorite clever and crafty tips is using industrial-strength Velcro.

“The stuff is amazing,” Amy writes. “Super sticky back to hold it on, and the Velcro holds super secure.” She says regular craft Velcro can’t hold a candle to it, and to prove her point, she links to costumes she’s put together for her daughter with her walker in year’s past:

Halloween is just a week away, and industrial-strength Velcro might be exactly what you are looking for to make that special costume do what it’s supposed to. Happy costume making!


7 Halloween Tips for Kids with Disabilities

Halloween is coming, and for some parents of children with disabilities, it’s a holiday that can come with a bit of stress. With that in mind, I’m offering some tips to help your child — and you —enjoy Halloween this year:

Batman costume in wheelchair

A child in a Batman costume.

    1. Let your child’s interests shine. Help your child choose a costume that reflects his/her interests
    2. Learn to incorporate your child’s wheelchair into his/her costume. If your child uses a wheelchair, a lot of great and creative ideas can incorporate the chair into their costume.
    3. Do a trial run before the big day/night. Some costumes might be unexpectedly uncomfortable or cumbersome, and you’d hate to wait until 5 minutes before you’re about to leave for school or trick-or-treating to find that out!
    4. Before Halloween, put your child’s costume on and take a long walk around the house, or the block. This will help make sure that your child is comfortable and will be able to enjoy the costume and move in it easily.
    5. Talk to your child about what they might expect. Sometimes Halloween means your child is exposed to things that might frighten him/her: Haunted houses, scary costumes or noises. Talk to your child about things they might encounter during trick-or-treating, and practice self-calming skills in case they do get frightened while out that night.
    6. Research the sorts of treats your child can eat. Many children with disabilities may have food allergies or sensitivities that limit the treats they’re able to eat.
    7. If your child is non-verbal, Halloween can be a great opportunity to work on initiating communication! Program your child’s communication device to say “Trick or treat” or ask his/her teacher to design a picture symbol your child can use as he goes door to door.
Elena in lobster costume in a pot

Bernhard’s daughter, Elena, in a lobster costume.

Easterseals blogger Bernhard Walke’s daughter inspires him to come up with unique costumes for her every year. Tiny Elena wasn’t able to sit independently early on in her life, so her early costumes were made knowing her mom or dad would be carrying her. One year they came as chefs with Elena as a lobster carried in a pot,

The next year Elena’s aunt sewed pieces of green felt rectangles together to transform her niece into a bag of freshly pilfered cash for her parents, dressed as robbers, to show off.

Elena’s costumes became even more exotic after she graduated into a wheelchair. Last year her father used a collection of cardboard, wood, duct tape, zippy ties, and obnoxious yellow construction paint to convert Elena and her wheelchair into a bulldozer. “After a few nights painting, sawing, cursing, and imbibing a few beers, I transformed her wheelchair into a heavy-duty earthmover,” he laughs. Be sure to check out six-year-old Elena’s costume this year.