How a simple ‘tap’ made for a great day

by Beth Finke

There I am lounging on a ruby red couch that’s shaped like lips – an example of the pop art described to us at the Museum of Contemporary Art Chicago). Seeing eye dog Whitney wasn’t allowed on the couch.

One good thing came from the fall I took in December: Breaking my hand convinced me to apply for a Taxi Access Program (TAP) card.

The TAP card gives taxi discounts to Chicagoans whose disabilities make it difficult to access regular public transportation. Just “tap” the card on a screen in the back seat the same way others tap their credit cards and receive a discounted ride (taxi drivers are reimbursed for the remaining cost by the Regional Transit Authority).

My pride prevented me from applying for a TAP card before. I felt perfectly capable of taking a regular Chicago Transit Authority bus with my Seeing Eye dog Whitney to the memoir-writing classes I lead in Chicago. That was until it started to snow and was difficult to get to the bus stop. And then I fell and broke my hand. I wore a cast for six weeks. I started to think, gee, maybe those cards are intended for people like me!

I won’t stop taking the bus–at least when the sidewalks are all clear.

I called the Regional Transit Authority to apply, they sent reams of paperwork, my husband Mike can see and helped me fill the forms out, we mailed them in, the RTA called me for a phone interview, they set up a time for me to come to their office in-person, I arrived at the RTA office and answered more questions, Whitney led me to a bus stop, and an RTA staffer trailed behind to watch us step onto a bus. All this to see whether I’m “disabled enough” to qualify for a TAP card.

I don’t berate the RTA for putting me through all those hoops. I blame the scoundrels who fake or exaggerate their disabilities to use service animals, park in handicapped parking spots, and get cab discounts. In the end, I passed the audition. Or, I guess I failed: I qualified. My TAP card came in the mail last week! Perfect timing, as I needed it on my totally blind day Wednesday:

• 10:30 a.m. Used TAP card for cab ride from our apartment to Museum of Contemporary Art Chicago (MCA)
• 11:00 a.m. Attended first ever special hour-long tour at MCA for people who are blind or have visual impairments
• Noon Reviewed tour with MCA staff and shared suggestions and recommendations for the next special tour
• 1:00 p.m. Phoned cab for pick up at MCA and ride to Chicago History Museum
• 1:30:p.m. Attended first ever touch tour created by the Chicago History Museum for visitors who are blind or have low vision — it was a 90-minute highlights tour of a permanent exhibition called Chicago: Crossroads of America (can you believe both of these were on the same day?!)
• 3:30 p.m. Reviewed tour with MCA staff and shared suggestions and recommendations for the next special tour
• 4:00 p.m. A friend who met Whitney and me to join us on the Chicago History Museum tour walked with us to La Diosa to enjoy a delicious early dinner together — La Diosa owner and manager Chef Laura Martinez is, you guessed it…totally blind
• 5:30 p.m. Called cab and used TAP card for taxi ride home.

My TAP card won’t work on Uber or Lyft or other ride-sharing services, but all the registered cab companies in Chicago accept it. If it weren’t for my new TAP card I don’t think I would have signed up for both of those tours in one day — I’d be too anxious about bus routes, getting to new bus stops, knowing what commands to give Whitney when we disembark — excuse the dog pun — at a new and unfamiliar corner. Thanks to TAP, last Wednesday I was able to help two museums fine-tune future touch tours, and I did it all by going totally blind.

Hard-fought changes to the Affordable Care Act

by Mary Andrus

This week, Easter Seals is pleased to celebrate the sixth anniversary of the passage of the Affordable Care Act. This measure signaled a new commitment to making health care available and accessible, particularly for people with disabilities.

Easter Seals supports the changes included in the Affordable Care Act and, in particular, the insurance market reforms and affordability provisions.

“These were hard-fought changes,” said Randall L. Rutta, the President and CEO of Easter Seals, “but they are significant in the pursuit of affordable, quality health care for those who have had difficulty attaining or retaining insurance coverage in the past.”

By the end of the most recent open enrollment period on January 31, 2016, nearly 20 million people have gained insurance since October of 2013 through the Affordable Care Act. Easter Seals believes that the continuing goal of this effort is to assure that all people have access to quality, affordable health care that meets their individual needs. It is through these fundamental changes in the health care system that we can enable all Americans, including people with disabilities and chronic conditions, to be healthy, functional, live as independently as possible and participate in their communities.

Now, a parents’ insurance policy can cover an adult child with a disability until they are 26, a child can not be refused insurance coverage due to a pre-existing condition and lifetime limits on insurance coverage are prohibited. Access to appropriate and high quality health care services is essential for people with disabilities to live, learn, work and play in their communities.

This law opened a door to making that possible.

Join our legislative action network to have your voice be heard in Washington, D.C. along with Easter Seals’.

Who is DJ Mermaid?

by Beth Finke

More about the 9-year-old guest blogger who has her eyes on the White house: the two of us worked so well together that after her guest post was published here, she asked her mom if she could take a writing class with me.

“Not sure how this could work,” her mom wrote. “But she has some time now if you do.” Turns out my young writer is home from school while they try a casting program — she has casts from her hips down to her ankles, on both legs.

I had time.

My Seeing Eye dog Whitney and I took a train from Chicago to visit her for our first class a few weeks ago. Now I give her a writing assignment every week, she emails her work my way when she’s done, I use my talking computer to read through her rough drafts, and every Friday we go over my comments and suggestions together. She makes the revisions she agrees with, emails the revised essays back to me, and…voila!

Her first piece was about coming up with a pen name:

The whole mermaid obsession started when I was about 2 — roughly. I was at my grandparent’s house and I was watching The Little Mermaid with my young aunt. Of course I immediately fell in love with Ariel, the youngest mermaid princess of King Triton. I loved her because at the time I couldn’t really walk and she couldn’t really walk on land either.

Her pen name? DJ Mermaid. When we got together to talk that week, I told her I approved. “DJ Mermaid,” I mused out loud. “It has a nice ring to it.” And come to think of it, President Mermaid rolls off the tongue pretty easily, too.

Future president asks, “Why do you need to know how I move?”

by Beth Finke

Future president with her dad

Remember the 9-year-old who wrote a post here for Valentine’s Day about how much she loves her Dad? I met that guest blogger years ago when I was being treated for a rotator cuff injury. This girl was only 2 years old then, but she remembers visiting the clinic once when I was there and petting Hanni, my Seeing Eye dog. “She was soft!”

Years later I was flipping the radio dial and happen to come across a young girl talking with her aunt for a StoryCorps interview titled Future president doesn’t want to be defined by her disability. It was that same girl. The one I’d met at the clinic.

I emailed the StoryCorps star to let her know how much I enjoyed her interview, and that led to a visit to her public school to give a presentation there with my Seeing Eye dog. I approached her about writing a guest post for us in February and was delighted when she said yes.

After she sent the finished piece my way, I emailed her to let her know I’d be writing a short introduction for it. “Remind me –do you use a walker? A wheelchair?” I asked. “Without being able to see you, I don’t know.”

And here’s where that 9-year-old became the teacher. She wrote back with a question. “Why do you need to know about how I move? Because this is a Valentine’s Day post and it’s supposed to be about my relationship with my Dad.”

Good question, Madame President. I told her I needed to know how she gets around because the place I work –Easter Seals — is an organization that helps people who have disabilities. “So the posts are all about people who have disabilities, or legislation that involves people who have disabilities, or services or treatments that help people who have disabilities.” I told her I would totally understand it if she didn’t want me to mention anything about her disability in my introduction. “But if I don’t mention disability, it won’t really make as much sense to have it on the Easter Seals national blog.”

She thought long and hard about all this, and we worked on the introduction together. In the end, the introduction to her February post described her as an attractive 9-year-old who plays piano, writes stories, and loves to bake. “She has a physical disability that doesn’t stop her from doing anything she wants to do,” the intro says, and that’s absolutely correct! I was happy with the outcome, and even happier to learn a lesson in advocacy from a 9-year-old.

How my invisible disability effects voting and everyday life

by Beth Finke

I lead four memoir-writing classes for Chicago senior citizens every week, and 94-year-old Wanda Bridgeforth is in one of them. Wanda has had a significant hearing loss since childhood, but her hearing impairment was not detected until she was a young adult. Here she is with an essay about invisible disabilities, and how hers affected her schooling and her experience voting during elections in the past.

The whole class celebrated Wanda’s (on my right) 94th birthday last year. Photo courtesy Darlene Schweitzer.

by Wanda Johnson Bridgeforth

Diminished vision and limited mobility are evident and basically understood by most people, but hearing loss is not. I live with an invisible disability.

In my 94 years of life, I’ve never let my hearing loss prevent me from doing anything I want to do. That includes voting. My Grandmother was not allowed to vote in her home state of Mississippi. She didn’t vote in her first election until she was 80 years old and moved to Illinois. She was one of my life heroes, and in her honor I never miss an opportunity to vote in an election.

One time when I voted, the poll worker seated at the table asked my name. I answered, and she lowered her head to check the precinct register. Head still down, she said something I couldn’t understand.

I can read lips, but not when someone looks down into their chest when they talk!

When I asked her to repeat, she heaved her shoulders and mumbled some words. “I have a hearing loss and hear better when I can see your mouth,” I said calmly. “Would you repeat the question?” Between clenched teeth she asked, “What’s YOUR ADDRESS?”

I can read lips, but not when someone talks with their mouth clenched!

When I picked up my ballot at the end of the table, I looked back and saw her mouthing something about “that old senile deaf woman getting on her nerves.” As I was leaving the polls I looked directly at her, smiled and said in a very loud voice, “Thank you, have an enjoyable evening!” Others waiting to vote there applauded.

When I was a child there was little known or acknowledged about hearing loss, an invisible disability. Many adults considered me impolite when I didn’t speak to them. At drama club rehearsals I missed cues on my left side. Teachers made me stand in the hall because I was talking out loud and disturbing the class. That, or I was looking around the classroom when I should have been reading or writing an assignment. Trouble was, I hadn’t heard the teacher tell us that was what we were supposed to be doing.

Some parents forbade their children from playing with me because I wasn’t ladylike. They said I was uncouth because I laughed and talked too loud. I interrupted others. I often didn’t respond when spoken to.

For years I cried through earaches and wished I could reach inside my ear and remove the cause. Shortly after my husband was discharged from the army after World War II, I had an earache. He dropped sweet oil into my ear and applied heat liniment to the outside of the ear. The earache worsened. A friend recommended an ear nose and throat doctor in the Hyde Park neighborhood of Chicago.

When the ear was healed, that doctor gave me an audiogram. The diagnosis was a hearing loss in both ears. The doctor asked how I had gotten through school. I had no idea. I received high marks for academics, but low ones for deportment.

The doctor sent me to an audiologist who fitted me for a hearing aid. I remember my reaction of joy and tears when I first heard a dove cooing in our back yard.

Over the years, time and ear infections have taken their toll and my hearing has diminished to Legally Deaf level. I use a caption phone at home now. The screen lights when the phone rings. The number and name of the caller is printed on the screen. It prints out what the person on the line is saying and can store the conversation for further reference. It has a personal directory to store all personal phone numbers. With the volume control and the caption I can talk to all of my soft talking friends.

There is still much to learn about hearing and the function of the mini-microscopic bones of the ear. Thank Goodness research has made some progress and we are becoming more aware of the symptoms, causes and treatment of Hearing Loss, an INVISIBLE DISABILITY.

Help America Vote Act of 2002 sure helped this morning for Illinois primary

by Beth Finke

I’d researched the issues. I’d studied the candidates. It’s a primary election, not a general one. Voting this morning should have been a breeze.

And you know what? It was! I voted on my own in the Illinois primary election today!

The Help America Vote Act of 2002 mandated that voting systems provide some way for people to vote independently and privately (including those of us with disabilities), but if you read the post we published here Monday, you know there have been many, many elections since 2002 where that hasn’t been the case for me (and probably others).

I’d show up at the polling place, sign in, and stand there and listen to the poll workers scramble. “Where are the headphones?” “Anyone know how you make that computer talk? “How do you turn it on?” “Why isn’t there any sound?” “How’s it supposed to work?” They seemed to want to do right by me, but few of them knew what “right” was.

In the end, even after that Help America Vote Act was passed, my husband Mike (who can see) still had to sign an affidavit, guide me to a traditional voting booth, read the choices out loud and wait for me to tell him (and anyone else near enough to eavesdrop) who I wanted to vote for.

But not today. Mike had an errand to run, so I showed up at our precinct alone with Whitney, my Seeing Eye dog. Poll workers seemed sincerely happy to see us, they helped me fill out a paper form to register, and after I used a strait-edge to sign on the dotted line, one of the poll workers showed my Seeing Eye dog Whitney and me to a computer.

“You know how to work these?” she asked, placing a special handheld contraption the size of a cell phone in my hand. I nodded yes (I’d attended a special class free-of-charge earlier at the Chicago Public Library to be introduced to this technology) and put headphones on. Tactile buttons on the contraption allowed me to take my time, scroll through the ballot, mark my choices, and…abracadabra! I voted.

All. By. Myself.

A small thing for some, but huge for me. A lot is riding on today’s vote, and I felt privileged –and proud – to have a part in making these important decisions.

Now, bring on those presidential elections in November!

Take our election survey so we can bring issues to the candidates that most affect the Easterseals audience.

Voting inaccessible? Try these voting hotlines

by Beth Finke

I wrote a post earlier this month about times I’ve had problems accessing the talking voting machines at our local polling place. The Illinois primary is tomorrow, and this time I’ll head to the booth armed with phone numbers of hotlines 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).

During the last state primary 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 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.

If you haven’t yet, take our election survey on issues that may matter most to you (or not). Have your voice be heard!

A Mother and Her Daughter with Autism Cast Their Votes

by Beth Finke

Here’s a guest post by a mother about her adult daughter with autism and how the two of them research — and vote for — their candidates of choice.

by Bonnie Carol McGrath

Every year around election time I get the same question. “Molly votes?” People are surprised to hear that my 33-year-old daughter Molly, who has autism, is interested in elections, makes her own decisions about which candidate to vote for, and maneuvers the oftentimes complicated Cook County ballots at our polling place on her own.

And so, each election season, I end up explaining over and over again that Molly loves voting, and that she votes with enthusiasm and relish. In many cases, she knows the candidates as well — if not better — than most voters do. When her voter’s card arrives in the mail before the primaries every year, she cuts it out immediately and proudly places it in her purse.

So how can it be that an autistic person loves to vote? For starters, the Printer’s Row neighborhood that Molly and I live in here in Chicago boasts several community organizations that take elections seriously. Neighbors we know have run (and are currently running) for office. Candidates visit us regularly to ask for our vote at neighborhood candidate forums. Even Barack Obama, when he was a State Senator, made regular visits to introduce himself again and again. Little did we know….!

I have always been interested in politics and elections, and over the years I have dragged Molly (willingly) to hundreds, maybe thousands of events, fundraisers and talks featuring candidates and issues. Bottom line, Molly and I pretty much go to any candidates’ forum that we are invited to, and she meets the candidates up close and personal.

Molly probably doesn’t understand some of the finer points of public policy, but who does? However, she engages with the candidates over refreshments
after their speeches and debates at these sorts of events. She knows the feeling of having a candidate look her in the eye and sincerely offer a handshake, a little joke or a kind word. Who doesn’t?

I am a lawyer, and this year I know many of the judicial candidates personally, and I have talked with Molly about them in advance of the upcoming March 15 primary in Illinois. I often remind her that so-and-so, a friend of ours, is running and tell her to make sure she doesn’t overlook them. I let Molly know which candidates are more likely to fund programs for people with disabilities, and which ones aren’t. And trust me, she remembers — she understands how hard it is to raise money for Project Onward, the Chicago art studio where she toils each and every day creating artwork alongside dozens of other very talented artists with disabilities.

My daughter knows if someone seems interested in her and her life, and I know she estimates their character in her own way. And isn’t character what we’re supposed to be gauging when we cast our vote?

The sort of in-person engagement that candidates offer Molly has paid off for a number of candidates who have won Molly’s loyal vote. This year, like always, she’s been out meeting candidates, and once she decides she likes them, she circulates their campaign literature to our neighbors any time she’s given the opportunity.

But what about the ballot itself, people want to know. How can she understand that long and very intricate list? I do help her on some of the finer points (I might remind her of the option to vote for more than one candidate when that is a possibility, for example). Election judges know that after Molly and I take our ballots, I’ll fill mine in before helping Molly maneuver some of those finer points. I’ve never pushed her away from or toward any candidate – until this year.

This election on March 15th, I am running for judge myself – Molly will have a chance to vote for her mom. This might be one race where I might give her a little nudge when we take our ballots.

Disability representation on reality television is a complicated issue

by Erin Hawley

A slew of reality shows are popping up featuring people with disabilities, including Born This Way, The Undateables, and Autism in Love. One of my passions is reviewing TV shows that have a focus on disability, so I always approach media with a critical eye. As I watch these programs, I ask myself four things:

1. Is disability intrinsically film-worthy?
2. Why are these shows popular?
3. Are people with disabilities being exploited for entertainment here?
4. Or might this be a good way to normalize disability?

My answer is complicated. As a disabled person, I connect to the stars on these shows. I do not have Down syndrome, but I can see myself in the group of adults on Born This Way — they want independence so desperately but are challenged by family and society every step of the way. Seeing this played out on national television is profound.

I also realize people with disabilities are not the only group watching. We might not even be the target audience — and that’s where I become uncomfortable.

I want us included in media, and I am not opposed to reality shows starring people with disabilities on their own terms. Yet a part of me wonders if others are watching just because they can stare at us from the comfort of their couch. In person, people tend to steal glances at me when they think I am not looking or won’t notice. There is a long, problematic history of exploitation and people with disabilities masked as entertainment (think carnivals), and I question whether or not these reality TV shows might be the modern extension of that.

I still can’t say definitively how I feel. Disability representation on reality television is a complicated issue, and that also means there’s much to discuss. It’s even the topic of Easter Seals Thrive’s Twitter chat today at 7pm CT / 8pm EST!

Joining us today is Zach Anner, star of reality show Rollin’ With Zach on Oprah’s OWN, and also host of his comedic YouTube channel. Anyone can participate in the chat, and if you decide to join in, you could also win a copy of Zach’s new book, If At Birth You Don’t Succeed!

I’m hoping the discussion allows people to examine disability representation in a new light and will offer a plethora of views on this topic. Can’t wait to see you there on Twitter!

Now nothing will get in the way of casting my vote

by Erin Hawley

Erin Hawley

It started as a regular work day — sitting in my wheelchair at the bedroom desk, checking Thrive’s social media accounts. Then came a knock at the front door.

A young woman was standing there on my porch, armed with a smile and a clipboard. “Would you like to vote by mail?” she asked.

The voting-by-mail option was something I’d thought about in the past, especially since family members have to drive me to the polling station when there’s an election, and I’ve missed a few local votes when a ride wasn’t available. I also missed one election because I was sick.

I take politics and voting seriously. It’s important that my voice and those of people with disabilities are heard. Our collective efforts have made certain laws and programs possible — the Americans with Disabilities Act (ADA) and the Achieving a Better Life Experience (ABLE) Act, for example — but Lack of transportation, inaccessible polling stations, health concerns, and other community barriers still can make it impossible for us to vote and take part in this national right.

When I hear people say “there is no excuse for not voting!” it makes me cringe. The reality is people with disabilities often have valid reasons why they can’t vote. And really, this is a truth that is not limited to people with disabilities. Poor and working-class families may not be able to get time off from work to go to their polling places. Single mothers or fathers might have to stay home with sick children. And some people feel uninformed because they don’t have access to resources many of us take for granted. The list goes on.

So I was pleasantly surprised when the young woman knocked on my door. I hadn’t signed up for voting by mail before because I wasn’t sure how to do it. By the time elections rolled around, it was too late to do the research.

But now, thanks to the efforts of this woman and the system in place behind her, I was able to sign up for mail-in ballots by simply reading and signing my name on a form. I experienced a powerful emotion when I signed that form — one of solidarity, of seeing how we can all work together to make sure people with disabilities and other marginalized individuals are included in this democracy. I realize we still have far to go until we are truly included in society, but for that moment, I felt what it could be like — and what it should be like — to have your voice count.

Don’t get me wrong: I did enjoy casting my vote in person, and that should still be an option for people with disabilities. We need to work at making polling places accessible to all, but for now at least I know I can vote in every election, regardless of my health and access to a ride.

Share what is most important to you this election with our survey. We’ll share results with candidates! Plus, share your thoughts on Twitter and tag @Easter_Seals and #PWDvote.