Does becoming disabled make you strong?

by Beth Finke

Sometimes people I meet for the first time feel the need to point out there are benefits to becoming disabled. They tell me hardship can make you strong. Compassionate. Thoughtful.

I lost my sight in my 20s, and I know firsthand that becoming blind changes the way a person moves through space, how they read, and the ways they perform other daily living skills. Isn’t that enough? Does it have to change one’s character, too?

A Fresh Air interview with journalist James Tobin I happen to catch on NPR last month reassured me that I am not alone in trying to make sense of this change-of-character concept. Tobin was being interviewed about his new book The Man He Became: How FDR Defied Polio to Win the Presidency, and the interviewer, Dave Davies, said contracting polio as a man and losing the use of one’s legs must have been a shattering experience. Then he asked Tobin, “Do you think it made him a different president?”

Tobin said that after contracting polio, President Roosevelt was still the man he had been before. People close to Roosevelt said it tempered him, and his wife Eleanor herself said it made him stronger and more courageous, but the author said, “That doesn’t quite make sense to me. I think people have those innate capacities or they don’t. The crisis draws it out of them. It allows them to see who they really are.”

The way James Tobin talked about disability in this interview is helping me put some of my own thoughts about becoming blind into words. Maybe becoming disabled can give a person a kind of confidence in the strengths that were already there, and a person just can’t get that kind of confidence until they’re tested. If that’s true, it’s one upside to becoming disabled that I actually can embrace.

Because who is perfect?

by MacKenzie Olsberg

Dearest readers, I feel I must admit something: I do not like to shop.

I don’t like crowds, and I especially don’t like dealing with the crowds at malls. If I could just shove money at someone to buy me jeans that fit (since I seem to not do a great job at that on my own), I would. But of all the things that annoy me about shopping, I have to say: I especially do not like spending money on clothing that doesn’t look anything on me like it did on the mannequin.

The use of mannequins is an age old practice in stores to show off clothing at its very best — tiny waists, clothing pinned behind the back, blank painted faces and looking the epitome of fashion perfection. I, like many people, come nowhere close to those measurements and ideals.

Should this make me feel bad? Not at all. My body may not be perfect, but it does what I need it to do and I am grateful for what I have.

If more companies had practiced body diversity while I was in high school, it would have saved me several angst-ridden teenage years feeling uncomfortable in my body. But change is in the air. Earlier this year, Swedish store Åhlens revealed new mannequins much closer to the average woman’s body shape, and H&M has stated they are considering following suit.

It’s a wonderful step towards celebrating all types of bodies, but what’s really amazing is Pro Infirmis in Switzerland. Pro Infirmis is an organization for people with disabilities, and they created a series of mannequins based on real people. Jasmine Rechsteiner, for instance. She’s a Miss Handicap winner who has spine malformations. Or how about Erwin Aljukić, an actor with brittle bone disease.

Models and their mannequins. Picture from www.ProInfirmis.ch

Last week, the mannequins were placed in the front windows of shops on Zurich’s main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities on December 3. The campaign was called “Because Who Is Perfect? Get Closer,” and it’s exciting to see the beginning of an open dialogue about what really is a perfect body

Click here to see the process that went into making these unique mannequins. Perhaps one day in the near future, we won’t be disappointed when we try to look like the mannequin in the shop window.

Five short films you don’t want to miss

by Rachel Talen

ABC worked with our friends at Veterans in Film and Television (VFT) to shaped five scripts written by veterans into short films that are airing on television stations across the country. I’ve seen three of the five Home for the Holidays digital short films already and wanted to let you know about them:

• THE LETTER by CAPTAIN REBECCA MURGA Rebecca’s film tells the heartwarming story of a little girl who writes a letter to Santa. She is angry at Santa because every Christmas she doesn’t get what she asks for. This year, the only thing she wants is for her mother, who is deployed to Afghanistan, to come back home for Christmas.
• YELLOW RIBBON by SERGEANT DONRE WALKER Inspired by his relationship with his daughter, Donre’s heartwarming, emotional, scripted story celebrates the power of hope, starring Tamala Jones.
• LAUGHTER UNDER FIRE by SPECIALIST COLIN WELLS A documentary short told from the filmmakers’ experience in Afghanistan, his time served in the Army, and how laughter brought his battalion together. SPC Wells’ documentary short shows firsthand the power of laughter under extreme conditions.

If you missed seeing any of those three on TV, you can watch them on line at the ABC web site.

Tune in to ABC tonight, December 9, to catch the debut of the fourth film, “The Dance” by Staff Sergeant Ryan Curtis. From what I’ve been told, it’s a touching story about a young soldier, severely injured in action, who’s determined to surprise the girl he loves with the dance they never had.

The final film, “A Homecoming” by Donna Bachelor, debuts this Friday, December 13. Donna’s film is the story of a young veteran who excitedly awaits the return of his best friend, the warrior and hero he served with. Word has it that this film is an emotional reunion with a surprise ending when these best friends are reunited.

Don’t miss this chance to see five short films written, directed, and produced by U.S. Veterans with aspirations to work in the entertainment industry.

Meet eight military families treated to private Lady A concerts

by Rachel Talen

The Haire Family with Lady Antebellum

A post published here Monday described what it felt like to accompany Sgt. Tommy Haire and his family to a private Lady Antebellum concert. Now it’s my pleasure to introduce you to seven other families Lady A honored with a private concert as well.

The Gaither Family and Lady Antebellum

You might remember our 2008 child representative Scott—well, his dad, Shannon Gaither, is a 30-year veteran and was honored by Lady A in Atlanta. Scott even got to perform with Lady A! A couple minutes in to the song, Charles Kelley asked Scott to join them on stage to play a cajon drum. The Gaithers said it was a thrilling moment to say the least!

Join the #GivingTuesday generation

by Beth Finke

After spending last Thursday being thankful, we’ve all had two days to shop for deals. Now, today, #GivingTuesday is our chance to show that holidays can be both about gift-giving and giving back, too. The mission statement on the #GivingTuesday web site explains:

#GivingTuesday™ is a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support nonprofit organizations.

#Giving Tuesday started last year as a way to focus attention on the spirit of giving throughout the holiday season, and it’s back again this year. Join in the spirit and donate to Easter Seals today. Every year, with your support, Easter Seals helps nearly 1.8 million children and adults with disabilities live more independent and fulfilling lives.

Your generosity today will allow us to meet the growing demand for our critical services this winter and in the year ahead. Your donation will provide early intervention therapies for children, physical rehabilitation programs, job training for veterans and young adults with disabilities, and so much more. Please make a gift to Easter Seals today and spread the word.

Easter Seals joins Lady Antebellum and ABC News welcoming veterans home

by Rachel Talen

Lady Antebellum giving a private concert honoring veteran Tommy Haire.

It happens every once in a while in our office — someone comes back from a mission-fused experience and cannot stop gushing about our wonderful client families and about how much they love working here. I had one of those “my job totally rocks” days when I accompanied Sgt. Tommy Haire and his family to a private Lady Antebellum concert in Chicago. Singer Hillary Scott explained that the country music trio wanted to give back to our veterans and honor them through music.

The Haires are such a sweet and deserving family. I had so much fun getting to know them and it was touching to see them recognized and thanked by celebrities!

I’m a huge country music fan. I was starstruck to meet Lady A, and the coolest thing of all was to personally thank them for everything they’re doing for veterans.

To kick off the holiday season, Lady Antebellum toured local markets, giving private radio concerts to an Easter Seals-connected veteran and his or her family. It’s all part of ABC’s annual “Home For the Holidays” campaign to showcase the talents of veterans currently working or aspiring to work in the entertainment industry. And it helps support Disney’s company-wide “Heroes Work Here” initiative, which served as the foundation for a recent veterans-hiring event at Walt Disney World.

With the help of Easter Seals’ partner Veterans in Film & Television (VFT), ABC chose five scripts written by veterans that describe what being home for the holidays means to them. The stories have been shaped into short films that will premiere each Monday.

The theme of coming home for the holiday season is a theme that hits close to home for Lady Antebellum’s Hillary Scott. Her best friend’s husband serves in the Navy, and he recently came home to surprise his wife and their son for the boy’s first birthday.

The band recorded a cover of Kenny Loggins’ “Celebrate Me Home” for the campaign and is performing it in sets for Easter Seals veterans and their families in select markets.

Gathering to celebrate and reconnect with family and friends for the holidays is a highlight for all. Be sure to recognize our veterans and thank them for their service — not just during the holiday season, but all year long!<

Adjusting to holidays and ASD

by Beth Finke

I am pleased to introduce Robin McReynolds as a guest blogger today. Robin is an attorney who volunteers here at Easter Seals in Chicago. She is the proud mother of two wonderful children, Hope and Alek, and is married to her best friend, Alexander.

Having a “normal” Thanksgiving

by Robin McReynolds

Alek

Thanksgiving is definitely the holiday that brings our family together. Although we are scattered across the Continental U.S., Canada and Europe, everyone makes an effort to get together.

It’s a time to catch up on all that’s happened in the past year. Everyone shares pictures of children, grandchildren and stories of travels. Children run through the house laughing and yelling. The only one you don’t hear asking for treats before dinner is my son, Alek. He was diagnosed with ASD at age two, and does not speak.

At first, the other children had no idea how to interact with him. He would shy away from physical contact and games. He often stood far away from the other children and just watch them play. I’d look over to my husband and see such sadness on his face. I knew adjustment to the diagnosis would be difficult for our family. It would take time.

Holidays became very stressful, as we were consumed with how to manage meltdowns, exit strategies, and special diets. How many times would we be asked, “Is he alright?” I’d answer yes. “He’s just fine,” I’d say, although I wasn’t sure if my husband and I were.

Time has changed so many things. Alek has grown into a friendly, athletic, six year old who is a star with his cousins. They all include him in games and want to try out his “very cool” communication device. He loves the attention. I love our very “normal” Thanksgiving. I am very thankful for the understanding from our loved ones and the comfort I feel with Alek’s progress. Alek’s early diagnosis granted our family time to give him the best supports. Time to adjust, time to take advantage of therapy services, and time to learn about assistive technology. Now I look forward to Thanksgiving tomorrow, when we’ll take time to be together with family. We have a lot to be thankful for.

4 ways to make cities better for people who are blind (and sighted)

by Beth Finke

My Seeing Eye dog Whitney thinks city life is pretty fantastic. (Photo courtesy WBEZ.)

I subscribe to TED Talks even though I can’t see the videos — just reading the descriptions of their featured talk each morning gives me an inkling of what “the world’s most fascinating thinkers and doers” are thinking and doing these days.

A couple weeks ago an email update popped up in my inbox linking to a talk by an architect who has lost his sight. The promo material said architect Chris Downey’s 12-minute talk, called City Designed with the Blind in Mind, “shows how the thoughtful designs that enhance his life now might actually make everyone’s life better, sighted or not.”

Downey had been a working architect in San Francisco for years before 2008, when surgery to treat a brain tumor left him blind at the age of 45. He was so familiar with the city that within six months he was back at work and using a white cane to commute to the office on his own.

When I watched (okay, listened to) Downey’s TED Talk, I found myself nodding in total agreement when he declared “cities are fantastic places for the blind.” I lost my sight in 1985. Since then, I’ve lived in a college town, a suburb, a touristy beach town, and a big city. I enjoyed each place for different reasons, but for me, the past ten years in Chicago have rewarded me with the most opportunities and an unequaled sense of independence.

Downey doesn’t explain in the TED Talk how he works as an architect without being able to see anymore, but I found an interview at The Architect’s Newspaper where Downey describes one of the first projects he worked on after losing his sight: a Polytrauma and Blind Rehabilitation Center for the Department of Veterans Affairs in Palo Alto. “The client and the team were becoming aware that they really didn’t understand how space and architecture would be experienced and managed by users who would not see the building,” he said. “When I showed up as a newly blinded architect with 20 years of experience, there seemed an opportunity to bridge that gap.”

The fact that he was a rookie at being blind was a bonus, he said. “I was not that far removed from the experience of the veterans who were dealing with their new vision loss.” Now Downey runs his own business consulting on design for people who are blind and visually impaired. In addition to the VA project in Pal Alto, he has worked on renovations of housing for people who are blind in New York City and consulted on the new Transbay Transit Center in San Francisco. He says urban planners who think of people who are blind as prototypical city dwellers will come up with design elements that make life better for everyone, whether sighted or not:

1. a rich, walkable array of predictable sidewalks
2. no cars
3. many options and choices at the street level
4. a robust, accessible, well-connected transit system

I don’t know how a city like that might look to all you Easter Seals blog readers, but it sure sounds, ahem, good to me!

Travel help at airports this Thanksgiving

by Beth Finke

Flying over the Thanksgiving holidays? Here’s something you should know: the Transportation Security Administration (TSA) has ways you can get help navigating airport checkpoints. The TSA’s Passenger Support Specialists Program trains select Transportation Security Officers, Lead TSOs and Supervisors to take on the extra responsibility of helping passengers who may be in need of special assistance. From the Transportation Security Administration web site:

More than 2,600 Passenger Support Specialists at airports across the country assist passengers who require additional assistance with security checkpoint screening.

Passenger Support Specialists receive specialized disability training provided by TSA’s Office of Civil Rights and Liberties, Ombudsman and Traveler Engagement. Training for Passenger Support Specialists include how to assist with individuals with special needs, how to communicate with passengers by listening and explaining, and disability etiquette and disability civil rights.

The site said that travelers who need special accommodations or are concerned about checkpoint screening can ask a checkpoint officer or supervisor for a Passenger Support Specialist to provide on-the-spot assistance. Travelers can request a Passenger Support specialist ahead of time, too, by calling the TSA Cares hotline at 855.787.2227. TSA recommends you call approximately 72 hours ahead of travel to give TSA Cares a chance to coordinate checkpoint support with a TSA Customer Service Manager at the airport if necessary. I may just give this a try. Experience has shown me that you can never get enough help when it comes to navigating O’Hare Airport!

Book review: Naoki Higashida’s “The Reason I Jump”

by Gui Batista

I’m proud of myself. Last week I checked 14 tasks off my to-do list. This week, I have exactly 35 new tasks on my to-do list. Yes, you read that correctly. For every task I checked off my list, exactly 1.5 new tasks emerged in its place. I’m not sure how that happened. I’ll put it on my to-do list to figure it out.

I’m fairly certain that I am not alone in sometimes feeling overwhelmed by the lack of white space on my calendar or the abundance of (mostly self-induced) stress in my life. It is easy for me to get stuck on a seemingly infinite to-do list and forget that I check off the items on that list from my comfortable Easter Seals Headquarters office on the 24th floor of the Willis Tower on one of two monitors (or my iPad or iPhone). The point is it’s all about putting things into perspective.

Every once in awhile I watch a documentary or read a book that reminds me that perspective is the key to keeping my sanity. The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, written by Naoki Higashida and translated by KA Yoshida and David Mitchell, was the latest reminder of how important perspective really is.

Naoki was diagnosed on the Autism spectrum. He is unable to express himself using speech. In fact, he lacks many of the control mechanisms in his brain that control his speech, sensory input and behavior — the same mechanisms many of us take for granted. However, with the help of his mother and an alphabet grid, Naoki learned to express himself through writing.

About that alphabet grid. I was confused by that term, but it is in fact what it is called in the book. In the book, David Mitchell (one of the translators) describes and defines the alphabet grid like this:

A Japanese alphabet grid is a table of the basic forty Japanese hiragana letters, and its English counterpart is a copy of the QWERTY keyboard, drawn onto a card and laminated. Naoki communicates by pointing to the letters on these grids to spell out whole words, which a helper at his side then transcribes.

Naoki can also write and blog directly onto a computer using its keyboard, but Mitchell says Naoki finds the lower-tech alphabet grid a “steadier handrail” because it offers fewer distractions and helps him focus.

In 176 short pages, Naoki opens a window into the mind and the life of a person diagnosed on the Autism spectrum in a deeply personal, sincere and revelatory way. I will never view a person diagnosed on the Autism spectrum (or any person living with a disability) the same again.

Naoki’s story provided a much needed reminder that I needed to put my life into perspective. If you are in need of the same, this book might be just what you are looking for.