A life worth living — Veterans Affairs analyst finds fulfillment with support

Sue and her Seeing Eye dog KismetJust like me, Sue Martin uses a Seeing Eye dog to get around safely. Sue’s blindness is not the result of some eye disease or genetic condition, though. It’s the result of a suicide attempt.

Sue works for The United States Department of Veterans Affairs as a management analyst now, and though I’ve never met her face-to-face, I know her virtually—she shares her assistive technology know-how online and is a huge help whenever my speech synthesizer stumps me.

The Veterans Health Administration’s Office of Health Information asked Sue to write a guest post outlining ways Veterans Affairs is helping make people more aware of suicide warning signs and risk. She opens the post explaining that when she was 26 years old, she was so depressed that she thought she had no other option than a loaded gun. “There was an explosion and, in an instant, my world went dark,” she writes. “I didn’t die, but the failed attempt left me blind.”

Thirty years of rehab, therapy, and support from friends and family have brought Sue to a point where she is willing to share her story in hopes it might help others who believe life is not worth living. She is happily married and describes her work at Veteran’s Affairs as “fast-paced and exciting.” Instead of facing each day with dread the way she did all those years ago, she says she greets each day in anticipation of what she might discover.

Sue Martin is deservedly proud of what she’s made of her life, and extremely grateful to the people who helped her along the way. “I didn’t do it in a vacuum,” she says. “The important thing, if you feel your life is not worth living, is to talk about it and get help.”

 

Disability-focused movies are nothing new, but where are the actors with disabilities?

Two Movie Tickets In Front Of A Take Clapperboard And A Reel Of Movie Film

I lost my sight when I was 26 years old. After that, I pretty much quit going to movies.

I can still picture movies I saw on TV or at movie theaters before then, though, and it surprises me now to think how many of them happen to center on disabilities. Some examples:

  • In Coming Home (1978) Jon Voight won an Oscar for playing a veteran who was paralyzed in the Vietnam War.
  • In An Affair to Remember (1957) Deborah Kerr’s romantic rendezvous with Cary Grant is nearly derailed by a paralyzing accident.
  • In A Patch of Blue (1965) Elizabeth Hartman is a blind white woman who falls in love with a black man played by Sidney Poitier.
  • In Butterflies Are Free (1972) Edward Albert is a blind man attempting to break free from his over-protective mother.
  • In Johnny Belinda (1948) Jane Wyman is referred to as a “deaf-mute.”
  • In The Miracle Worker (1962) Anne Bancroft stars as Annie Sullivan and Patty Duke as Helen Keller.

As you can see, ahem, disability-focused movies are nothing new. But wouldn’t you think by now, it being the 21st Century and all, far more movies would feature actors and actresses who actually have disabilities themselves? In all the movies I watched when I could still see, I can only think of one where an actor with a disability played a character with a disability: The Best Years of Our Lives (1946) featured Harold Russell (a real-life veteran who lost both hands when a defective fuse detonated an explosive he was handling) as a World War II veteran home from the war. Actress Marlee Matlin is deaf, and of course she won best actress for her role in Children of a Lesser God, but I wasn’t able to see that one – it came out in 1987, a year after I lost my sight.

There must be plenty of actors out there with disabilities who are looking for work. Can it be true that it’s been nearly 30 years since a major motion picture featured an actor or actress who has a disability? Please leave a comment and tell me I’m wrong!

 

Frank Lloyd Wright Trust makes architecture accessible to all

That's me touching the museum signGuess who spent a Saturday afternoon last year playing the very same piano architect Frank Lloyd Wright practiced on 100+ years ago?

Me!

The Frank Lloyd Wright Trust was one of 31 cultural organizations that partnered with Chicago’s ADA 25 for 25 Cultural Access Project last year. To celebrate the 25th anniversary of the Americans with Disabilities Act in 2015, the trust offered special ASL and touch-tours of its historic sites.

The goal of the 25 for 25 Project was to help at least 25 cultural organizations in Chicago commit to improving accessibility for visitors with disabilities in 2015 in some concrete way, and then put plans in place to continue to take steps to improve accessibility after the 2015 anniversary year.

The success of last year’s tours motivated the Frank Lloyd Wright Trust to continue offering accessible programming, and last week Laura Dodd, the trust’s Director of Operations and Guest Experience, emailed me and forwarded a thank-you letter she’d just received from an exchange student from Poland who is blind and got to tour some pretty special houses. “I want to share a proud moment,” Laura said, and I was glad she did.

Monica also visited Robie House in Chicago -- in addition to taking the Oak Park tour.

Monica also visited Robie House in Chicago — in addition to taking the Oak Park tour.

Here’s the back story: Monika Dubiel had contacted Laura after completing a semester at University of North Carolina. She’d be visiting friends of her parents in Oak Park, Illinois when the Wright Plus house walk (an annual event where private home owners open their homes to visitors) would be going on and wanted to know if there might be some way she could take in the house tours, too.

Laura told me that in the past she wouldn’t have been able to make this kind of accommodation with only a weeks notice — or even a month’s notice. “But with all the things I learned {from 25 for 25} and the confidence I have gained, we easily said yes to her request.” I was so moved by the thank you note Monica wrote to Laura afterward that I contacted the young woman directly to ask permission to share her note with you Easterseals blog readers. Here it is:

Dear Laura,
I write to you to thank you for the marvelous opportunity that you
gave me to enjoy the architecture of Frank Lloyd Wright and his friends. The house walk this past Saturday was an amazing and unforgettable experience for me.

I especially would like to say thank you to the trainee who helped us all day by telling us about the places we were visiting. She spent the whole day navigating us from house to house and dealing with house captains private tours. Also, all the volunteers in the houses were very nice and open minded.

In some houses, I could touch whatever I wanted because the owners were there and they gave their personal permission. It was incredible to feel all the furniture and decorations.

I’m so glad that I could do that. You can’t imagine how grateful I am.

I also would like to ask about visiting the Frank Lloyd Wright House and Studio and the Robie House. We talked about me coming this coming Saturday, but it turns out that I will be in Hyde Park on Thursday, next to Robbie House. So I would like to ask if I can visit it on Thursday.

I hope you have a good day.

Best regards,

Monika Dubiel

Monica did indeed get a chance to visit both the Robie House and the Frank Lloyd Wright House and Studio. I’m not sure she got to play Wright’s piano, but I’m confident she enjoyed those two touch tours as much as I did when they debuted last year. Thank you, Frank Lloyd Wright Trust, for continuing to make architecture accessible to all.

Monica is off to Washington D.C. now to do an internship at the Polish embassy, where she’ll probably know more about Frank Lloyd Wright than anyone else working there. zpiecznej podróży!

 

Political ad features candidate’s son with cerebral palsy: Exploitative or empowering?

pexels-photo-29737A political ad in New Hampshire features a candidate with a son who has cerebral palsy. Is the ad exploitative? Or empowering? For an answer, I went to an expert: the mom of a daughter who has a similar disability.

by Deana Herrman

New Hampshire governor Maggie Hassan is running for senator. A campaign ad came out last month featuring her 25-year-old son Ben, who has cerebral palsy. Can we first agree that it was nice to watch a political ad where no one was belittled?

I watched the ad a few times. I had mixed feelings because I watched it each time with what felt like a different identity — a mom of a ten-year-old daughter who has a similar disability to Ben’s, an advocate, a healthcare worker and a skeptic who is sick of the tone and actions of politicians.

Governor Hassan’s ad tells the story of why she got involved in public service. I bet a lot of parents of kids with special needs can relate to that. I appreciate her story. It’s important for people to hear stories of parents of children with disabilities. It encourages sharing, gives parents a support community and may encourage others to get involved as well. Good for her for being involved and having this drive her so far into public service.

Honestly, children cannot always advocate right away for themselves, and as parents, one of our first jobs is making sure our children are supported. Some have called this ad exploitative saying that it takes advantage of her son. I think she is allowed to own every part of being Ben’s mom, including the part about being motivated to get involved as a result of raising him. After all, it helps define part of who she is.

Is this ad “inspiration porn?” Maybe. I don’t know the extent of Ben’s abilities. If it were Ben on camera telling us how great his mom is or telling his own story, would we judge the ad the same way? I can see how someone who has a disability might look at this ad and think that Hassan is using this story to show how everyone “helped” Ben without shedding light on any of the issues facing the disability community.

That said, Ben inspired her to get involved. Is there a way to tell her story without using her son? Probably not — especially if getting him what he needed was her main reason for entering community service and politics in the first place.

In the ad, Governor Hassan says, “That’s one of the reasons I got involved in public service, because it made it so clear to me how much you can accomplish when you work together.” It actually sounds to me like the collaborative efforts around raising her son are what inspired her to want to work with others in the same manner, even in the political arena.

Yes, she doesn’t have Ben’s disability, but isn’t it natural that his disability affects his parents and siblings? I can see how our daughter inspires/influences our son’s actions and vice versa. It’s just what happens living in a family.

In order to advance any progress for people with disabilities, doesn’t the greater community need to be aware and to be involved? To me, there are broader topics to discuss in an election year — topics like: When does the disability community make an impact in this (any) election? When does disability get discussed by politicians without tit being linked to healthcare? I wonder if Ben can vote — a big issue for people with disabilities. I wonder, if Ben saw that ad, would he vote for his mom? Or would he just want to go join a community service organization?

Perhaps rather than critiquing or lauding this ad, opponents and supporters can collaborate as Maggie Hassan did and use it as a platform to bring awareness to some of the disability issues that are getting ignored: voting rights, funding of IDEA, enforcement of ADA, equal pay, unemployment. Pick a topic — there is more work to be done!

 

Can you access the vote? Researcher says there’s still work to do

Image of an 'I Voted' sticker, with an asterixAn article in the May 23, 2016 issue of Stanford Lawyer magazine quotes a Stanford researcher saying that the United States is ill prepared to accommodate people with disabilities at polling places in the upcoming presidential election.

Researcher Rabia Belt will start her new position as an assistant professor teaching disability law and criminal law at Stanford this month and says rather than increasing access to voting, lawmakers seem to be doing just the opposite. From the article:

Strict voter ID laws popular in a growing number of states and aimed at cutting down on fraud at the polls are falling hardest on disabled voters, who are less likely to have the requisite documentation. Paradoxically, disabled citizens still wanting to cast ballots have to vote absentee, a process that studies have shown is especially subject to fraud and manipulation, Belt said.

I wrote a post here about phoning my State Board of Elections after poll workers couldn’t get the assistive technology at my polling place to work in a previous election. I spent a fair amount of time on hold back then before someone from the Illinois Board of Elections finally answered and listened to my story. “Were you able to vote in the end, then?” Yes, I said, but I wasn’t able to do it independently. I did my best to explain that the Help America Vote Act of 2002 mandates that voting systems provide some way for people to vote independently and privately, including those of us with disabilities. The Illinois Board of Elections assured me my poll workers would report the problem to the correct authorities and have it fixed. “You got assistance, then?” they asked. I told them yes, that my husband had signed an affidavit, that Mike had helped me in the voting booth. “So you were able to vote, then?” they asked. I said yes. “Okay, then, you’re all set,” they said, and hung up.

I called the voting section of the U.S. Department of Justice (Civil Rights Division) after that. The woman on the line asked me for details, took down notes and said someone would contact me. No one ever did.

The Help America Vote Act has been on the books for 14 years now. In this new Stanford Lawyer article, Belt says that in all this time, the Justice Department has not brought a single case under the law alleging violations pertaining to people with disabilities. “We could think of voting as so important that we make sure everyone is able to vote. But we also could say, ‘Voting is so important that we want to purify the electorate and make it hard for people to vote,’” Belt said. “I think there is a long history of the second phenomenon being true. We still see that today.”

 

Girl on the run: you do what with your guide dog?

If you haven’t signed up to follow BlindBeader’s Life Unscripted blog yet, I highly recommend you do. BlindBeader is a gifted young writer who lives in Edmonton, Alberta, with her husband, 3 cats and guide dog Jenny. My other friends who are blind and run go with a sighted guide, but BlindBeader runs with her guide dog. You can read BlindBeader’s Girl on the Run: you do WHAT with Your Guide Dog? post in its entirety on the Life Unscripted blog to learn more about her decision to take up running as a form of exercise. For now, here’s an excerpt to give you an idea of how she manages to run using her dog as a guide.

by BlindBeader

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

It all started a couple years ago after a fundraising run; I had made a great connection with my guide runner, and she and I agreed to go running together. This would involve going home from work, leaving my guide at home, taking my cane, catching the bus, going for a run, catching the bus home… and to me, that was a lot of planning for a quick run, as much as I loved running with my friend. Add to this the fact that I have a guide dog who genuinely likes to go fast (and occasionally we have “arguments” about such things), and I figured I could at least try running with her.

A friend makes sports-style harnesses and I asked her to make one for me. It has a lot of room for the dog to move and acts like a traditional harness in all other ways. The pull in the handle took some getting used to, but once I understood the feeling of the pull in the harness, we were ready to go!

I started small (like, around the block small); if Jenny hated it, I didn’t want to make her run with me. She took to it so quickly that over just a few weeks, then months, we increased our speed, distance and complexity of routes.

Our winter was short, so it didn’t take long for us to really get moving this spring. This past month alone, we have done our longest run ever (more than 7 km), had our fastest ever run longer than 5 km, and did our first ever big group run in support of the Fort mcMurray evacuees. That last wasn’t a flawless experience, but it taught me how to handle it, and gave me hope for other big group running events later on in the spring and summer, and even beyond. My goal is to run an organized 10K by the end of the season; we’re well on our way!

I’ve made some mistakes along the way – misjudging if my guide wanted water (the answer is usually “no”) or underestimating her willingness to go at fast speeds – but when we have this matching jogging-pace speed and are completely in sync, there’s no feeling like it.

Many people ask me if I’ve ever been hurt; the answer is yes, but it’s got nothing to do with Jenny and everything to do with my thinking I know more than she does. If I listen to her quick, decisive, flawless guiding moves, I know I’m in good paws.

More than once I let Jenny set the route (or, at the very least, don’t direct her as much); our neighborhood is a veritable labyrinth of angled sidewalks, roads that intersect and curve around back to each other – a residential runner’s paradise. I can focus on my feet, on my music (90s music is the best to run to!), on the feeling of wind in my face and the smell of pine sap in the air. I don’t have to think too much about where I’m going, what street I’ve crossed, if I’m lost or not, I can just run. I know my guide will run me home when she needs a drink of water.

 

People with disabilities: Accessibility Engineering Team at Google needs input

Hands typing on laptop keyboard

Hands typing on laptop keyboard

I just got a notice from the Accessibility Engineering Team at Google that says they’re conducting paid research sessions, and they’re looking for users with all types of disabilities to take part and help them make Google more accessible.

The notice said Google will be conducting studies in-person at offices in San Francisco and New York City. If you don’t live near either of those cities, you can still participate; they’ll be conducting some studies remotely via video or phone.

“User research studies help us improve Google products by allowing us to get feedback directly from our users,” the message said.

Here’s a link to the application form if you’re interested in signing up for a Google accessibility study and testing their products. When you sign up, you aren’t immediately enrolled in a study – but you’ll get notice when studies are being held.

I just signed up myself, and filling out the form took about ten minutes. Once I was done, I was given the link to a website I can go to anytime I want to opt out of being contacted for these studies — participation in Google’s User Experience Research studies is completely voluntary.

 

Easterseals launches revitalized brand bringing renewed purpose

Randy Rutta

Easterseals CEO Randy Rutta

Easterseals CEO Randy Rutta this week talked about our new brand initiative on his Huffington Post blog.

“Our goal is largely two-fold: one, to capture and communicate the work Easterseals does for and with people with disabilities right now; and two, to introduce Easterseals to the millions of people who are experiencing disability today, but don’t yet know our history and expertise.”

Read the post in its entirety.

 

Lifelong memories from Camp Easter Seals circa 1980s

David Hamrick

David Hamrick

Today, guest blogger David Hamrick shares his memories of Easterseals camp in the 1980s.  Now an adult with autism, David has been a longtime friend of Easterseals, most recently participating in our social media series about love, dating, relationships and disability in February. We hope you enjoy his trip down memory lane as much as we did.

I had the privilege of attending Camp Easter Seals when I was a young kid back in the late 1980s.  Most of my visits were at the Eastern Virginia facility just northeast of Richmond, and these were either weekend stays during the school year or full-week stays during the summer.

Camp Easter Seals was the place for many important childhood memories.  One of the most important was coming to learn of my diagnosis of autism.  While I was at the eastern Virginia facility, I was wondering why everybody else there seemed to be either in a wheelchair or have some type of disability.  I asked why everyone there had a disability of some kind and I did not, and it was at this time that I was made aware that I have autism, and that is how I was eligible to attend Camp Easter Seals.  I then seemed to fit in better with the rest of the attendees.

During one of my week-long visits, I started becoming very homesick and wanted to talk to my parents back in Williamsburg, Virginia.  Since we were not permitted to use the office phones for this purpose, as an eight-year-old, I figured out how to use the pay phone and call my parents collect, which really impressed them.  The weekend visits were not as hard on me in that regard.

In addition to what I have described above, I have some additional fond memories of my trips there.  I remember really liking the camp counselor on my very first stay there, and I loved playing with her long hair.  She had this really large textbook that I wanted to read, and she was nice enough to let me read it.  She also took me outside at night to listen to the frogs chirping away in the woods.

Another thing I liked in addition to long hair, at the time, were shoulder blades. A couple of the camp counselors allowed me to rest my head on their upper back where the shoulder blades are.  If you are wondering, this was one of my autistic special interests at the time.

I also enjoyed all of the bonfires we had, the arts and crafts, and developing a good friendly relationship with the nurse there.

The thing I did not like was the mandatory rest period where we had to stay in our rooms for an hour during the middle of the day.  I got really bored since I did not take naps at that age.

 

 

A look inside Access Project: making theater open to all

This past week I attended two plays I would have never seen experienced otherwise.theater-curtains-down-morguestock

Let me explain.

Chicago’s Victory Gardens Theater moved to its new location at Biograph Theater (yes, the landmark building where gangster John Dillinger was ambushed) in 2006. The refurbished building boasts an elevator, ramps, wide hallways, widened doorways. A perfect location for Access Project, a nationally-recognized outreach effort to involve people with disabilities in all aspects of theater. Access Project designates certain performances as “Access Nights” by offering additional accessibility services to Victory Garden patrons. But wait…there’s more! Access Project also teams up with smaller theater companies (some who usually perform in small inaccessible spaces in basements, above taverns, down narrow hallways) from time to time to sponsor a one-night-fits-all production in Victory Gardens’ very accessible space.

Both productions I went to this week were produced by smaller Chicago theater companies hosted by Victory Gardens at the refurbished Biograph Theater:

  1. Once in a Lifetime, a 1930 play by George S. Kaufman and Moss Hart, was performed by Straw Dog Theatre company at Victory Gardens last night. . Chicago Tribune critic Chris Jones said the play is “seldom revived, and a lot of that has to do with the humongous cast of characters, featuring nearly 40 speaking parts.”
  2. Too Much Light Makes the Baby Go blind is a production by the Neo-Futurists that attempts to perform 30 skits in 60 minutes. They performed their “ever-changing menu” last Saturday night at Victory Gardens.

Dozens of characters. Actors playing multiple parts. Many, many scene changes. These particular two plays would have been recipes for blind disaster, but the thought put into the touch tours before each production — coupled with speedy Shayne Kennedy providing audio description in my headset for both plays — helped me take it all in.

Okay, maybe not all, but far more than I would have otherwise. Because, honestly, without this sort of special accommodation, I wouldn’t have considered attending these two complicated plays at all.
Audio touch tours are much more than just the tactile experience the name implies — a Touch Tour is a pre-performance program that gives those of us who are blind or have low vision an opportunity to:

  • participate in an artistic conversation about a production
  • experience a detailed description of the set, props and costumes
  • handle key props, set and costume pieces
  • tour the set with a sighted guide
  • meet the actors, hear the voices they’ll be using on stage, and learn about the characters they play

When the plays were about to start, I was offered an ear piece connected to a small device the size of an old-fashioned cell phone — it had a volume control dial so I could rev it up to hear the audio describer alert me to scene changes, character entrances/exits and other movements during the play. I usually can follow the play just fine and opt to go without the ear piece. Not this time, though. With one show offering 30 skits in 60 minutes, and the other featuring 40 speaking parts, trust me, I cherished those headphones — almost as much as I cherished the opportunity to seetake in these two fine productions.