Why I’m inspired to explore without limits

Image credit: Apple

Apple’s new campaign “Exploring Without Limits” is exciting for the deaf community, and for me! Their campaign is about Cherie King, who is deaf, and how she manages to travel to different countries with her iPad. She uses the iPad to communicate with others on the road. Having an iPad is so convenient for King to travel with, it becomes a barrier breakthrough in most countries she travels to. I hope this campaign inspires more deaf people to travel and discover other deaf communities. It has inspired me. I’ll tell you why.

I’ve been deaf since birth, and I have a lot of friends who are deaf or hard of hearing. I’m constantly listening to their travel stories and how they use gestures and pen/paper to communicate. It is so nice listening to Cherie King’s perspective on traveling using an iPad. Our generation relies heavily on technology, but having that incorporated in travel planning and travel communication is surprisingly eye-opening.

Many people have asked me how deaf people manage to travel on their own, because how would we know when to board a plane, how would we communicate with others in a foreign language and how would we know a car or a pedicab is coming behind us? Well, boarding a plane is one of the easiest things to do. Plus, deaf people are natural observers, and we ask the front desk to let us know if our cab is here or for help.

With tablets, we don’t have to ask others for help as much, which feels good. King mentions that she uses an app to look up if her plane gets delayed or cancelled, and she can catch the next flight available via her app.

How would you communicate with a foreigner? Gestures, learning their language, and trying to accommodate? Us too. Lucky for all of us, gestures are usually universal. King uses a translator app, and an app that is picture-oriented (so that you communicate via pointing out pictures instead of words). The car/pedicab is a little tougher, but we watch out for ourselves and our friends, we use our eyes, and we observe the environment around us a little more.

After looking at the campaign’s site, I went over to King’s website/blog — it’s pretty interesting. She shares gorgeous pictures of her travels, and her travel stories. King uses various kinds of apps like TripAdvisor, BabelDeck, AroundMe, Twitter and many more to communicate with people around her. For example, she would show the address on the Maps app to a pedicab driver so communication is communicated effectively and she gets wherever she needs to be.

This campaign really opened my eyes to the technology we could use to make travel easier, not only for deaf people but for everyone in the world. I don’t travel, mainly because I’m still on a college budget, but I daydream of going to London or Australia or Japan. I often am intimidated by the thought of how would I communicate, and how would I translate other languages… and Apple answered. I am now inspired to start traveling as soon as I complete college in the winter! With this technology (and other tablets), we can make new friends, experience places like we’ve never before, and truly enjoy traveling.

 

Major job training bill advancing in Congress

Once a month, the Bureau of Labor Statistics (BLS) comes calling with news on the employment picture for people with disabilities. The news is never great. The unemployment rate for people with disabilities is always in the double digits and – like during the last report (May 2014) – is more than double the national average. These monthly reports are wakeup calls, for sure, yet these alarming calls mostly go unanswered. Until now… I’m happy to report.

Congress is on the verge of finalizing legislation to help address the employment struggles faced by individuals with disabilities. Republicans and Democrats in the House and Senate reached agreement on a bill – known as the Workforce Innovation and Opportunity Act or WIOA – to update America’s workforce development and job training system, including the programs that help people with disabilities develop relevant skills and find jobs in their communities. The U.S. Senate took the first step toward enacting this legislation by overwhelmingly approving WIOA on June 25. The bill next moves to the U.S. House of Representatives where leaders have expressed confidence that the House will promptly act on the legislation to send it to the President, who announced he plans to sign the bill into law.

The timing on final approval of this historic legislation could not be more perfect.

Currently, only two in ten individuals with disabilities are in the workforce (compared to nearly 7 in 10 individuals without disabilities) despite the fact that about 80 percent of working-age people with disabilities want to work. Earlier, I wrote about recent efforts to boost hiring demand for people with disabilities, including hiring goals for federal contractors. In addition, the retirement of scores of Baby Boomers over the next decade creates new demand for qualified individuals in the U.S. workforce. Jobseekers with disabilities can help meet the hiring demand as long as they are equipped with relevant work skills needed by those employers.

That’s where this legislation comes in.

The Workforce Innovation and Opportunity Act addresses the supply side by helping to ensure individuals with disabilities, particularly youth with disabilities who are transitioning out of high school, have early access to employment services and supports focused on acquiring marketable skills needed for jobs of today and tomorrow. In addition, the bill sets high expectations, focuses on improving employment outcomes and promotes long-term employment success through customized employment, supported employment, assistive technology and other employment strategies.

Easter Seals supports the bill and has been very active throughout the legislative process. In fact just one day before the U.S. Senate action, 200 Easter Seals advocates from across the country met on Capitol Hill to push for passage of WIOA. In addition, Easter Seals online activists sent over 2,500 emails to their Members of Congress in support of employment services for people with disabilities. We have been so focused on passage of this bill because our hope is that after it becomes law and is fully implemented the Bureau of Labor Statistics will come calling again… but this time with good news about increased hiring and improved employment picture of people with disabilities. That’s what this is all about. And while it may not happen overnight, we think this bill is the start of something big in terms of employment for people with disabilities.

 

What scientists say about the exoskeleton kick

Exoskeleton and FIFA World Cup logo

Credits: Fogarty International Center, FIFA World Cup, Walk Again Project

We got so many comments and likes to Ben Trockman’s post last week that I thought you blog readers might like a follow-up. Here’s how scientists reacted to that momentous event at the World Cup’s opening ceremonies — a teenager who is paralyzed used a thought-controlled, robotic exoskeleton to do an opening kick.

Wired magazine quoted a neuroscientist and biomedical engineer at the University of Michigan saying that the opening kick might just be grandstanding. For brain-machine interface researchers, the Wired story said, “the impressiveness of the demo depends largely on the degree to which the exoskeleton is controlled by the person’s brain.” My husband Mike Knezovich wrote a story years ago about similar research at the University of Chicago, and the Wired story says that while several exoskeletons that can allow a paralyzed person to walk slowly are already available, researchers have only had modest success starting and stopping exoskeletons with signals from the brain. The neuroscientist said that if the teenager had walked gracefully at a normal speed to the ball and made adjustments on the fly — like if the ball had moved just as he was about to kick it — that would have been a phenomenal advance.

Over at the NIH Director’s blog, Dr. Francis Collins described the opening kick as an inspiring event that he hopes will provide encouragement for people living with paralysis, including an estimated 6 million in the United States alone. He wants people to be realistic though. From the article:

As compelling as today’s demonstration may have been, it was just a proof of concept. Robotic exoskeletons remain in the very earliest stages of development. Scientists need to refine their designs and test them on more people, and they need to analyze and publish the enormous amount of data they’ve already gathered.

Dr. Collins was pleased that billions of people saw that opening kick and says he hopes it serves as an “inspiring glimpse of just one of the many things that can be achieved when science is supported over the long haul.” Last week’s dramatic debut of this robotic exoskeleton came from 20+ years of scientific studies, and in his post last week, Ben said “To know there are people in this world that have the drive and determination to cure paralysis and improve the lives of people with disabilities is incredible.”

I asked Ben to write that post last week because I wanted to know what the opening ceremony kick would mean to him personally. I wondered if he thought all the hype was just a gimmick — more spectacle than science. He answered my question with the last line of his post: “I know there are some who think that the effort might be promising too much, too soon, but leave no second guessing here — I’m in!”

 

Lottery winners and accident victims: Is happiness relative?

Psychologists from Northwestern University here in Chicago published a study called “Lottery Winners and Accident Victims: Is Happiness Relative?” back when the Illinois State Lottery had just begun in the ’70s. The researchers asked 22 winners to rate their happiness months after the initial elation of winning the big bucks. In addition, they asked the winners how much pleasure they were taking in mundane activities like reading a magazine or meeting friends for coffee. Then they interviewed people who lived in the same neighborhoods as the winners but hadn’t won the lottery. The results showed that months after the winners were announced, the non-winners were just about as happy as the lottery winners. The so-called losers were finding much more pleasure in everyday activities than the winners were.

Whitney and me: a picture of happiness

The researchers also interviewed people who were paralyzed in accidents that same lottery year. Their research found that after initial sadness, the people who were paralyzed rated their pleasure in everyday activities slightly higher than that of the lottery winners. Their life satisfaction was nearly the same. Interesting.

It’s Monday. After I finish the cup of coffee my husband Mike made for me this morning, I’ll flip on the radio and listen to some classic pop music while I feel through the shoes in my closet for my sandals. Ben Folds? Jackson Five? The Police? Stevie Wonder? From there I’ll head outside with my Seeing Eye dog Whitney. It’s a warm, sunny, summer morning in Chicago. Maybe we’ll take the long way home, listen for birds, smell the flowering trees.

Back in the apartment, I’ll spend a few hours on my job for Easter Seals – I do most of my blog work from my talking laptop here at home. Then time to shower, dress, and head to the nearest stop with Whitney to catch a bus to head to the memoir-writing class I lead in nearby Lincoln Park.

I’ll feed my Seeing Eye dog when we get back, then maybe I’ll listen to a book while waiting for Mike to get home from work.
I’m re-reading my favorite book from childhood, one my older brothers and sisters read aloud to me when they were teaching me to read: The Adventures of Winnie-the-Pooh.

After my trip to the 100 Acre Wood? Off to Costco! I’ll hang on to the back of the cart, eavesdrop on people from all walks of life, try to decipher the dozens of foreign languages I hear, all while Mike pulls us through the aisles. He’ll stop periodically, say “Feel this!” and drop an enormous oversized jar of some unknown substance into my hands. “Miracle Whip!” he’ll exclaim with glee. I always roll my eyes, but I can’t help but laugh, too. And I can’t help but relish, ahem, the $1.50 hot dog and pop we enjoy before we leave. Free refills, too!

After unloading the Land of the Giants groceries at home, we might slink over to Hackney’s to share some wine with friends: Mondays are half-price bottle nights. Who wouldn’t think they’d won the lottery after a day like today? And I didn’t even have to buy a ticket!

 

Interns with disabilities are finding jobs in Wisconsin

When I started at Easter Seals over 12 years ago, I never pictured myself involved with graduation ceremonies for young adults. It never occurred to me that one day I would be part of sending young adults into the work world, but here I am!

Easter Seals Southeast Wisconsin has two Project Search sites in our area, and last week we had two completion ceremonies for our 24 Project SEARCH interns.

Project SEARCH is an exciting transition program for young adults with disabilities, and we collaborate with local businesses to provide employment skill building through internship rotations there.

In addition to the job skills learned in the internship, the classroom curriculum gives interns pointers on:

  • appropriate interpersonal skills with supervisors and co-workers
  • resume writing
  • job searching
  • how to apply for a job
  • how to understand what employers are looking for
  • understanding company policies
  • attendance, honesty and appropriate dress codes

During the ceremonies, each intern shares what they have learned over the last nine months. The interns are always a little nervous about speaking, but you can feel their well-deserved pride, and their stories never cease to amaze me.

What made this year particularly special were the VIPs in the room. Governor Scott Walker and Lt. Governor Rebecca Kleefisch keynoted these ceremonies as part of the Administration’s adoption of the “Better Bottom Line,” a year-long focus on employing individuals with disabilities in Wisconsin.

One goal of Better Bottom Line is to triple the number of Project SEARCH sites in our state, and we all learned how well Project SEARCH is working already: three interns announced they were starting jobs that very day.

Having the VIPs there was very special, but the very best part was looking around these large conference rooms (they can hold over 150 people) and seeing every seat filled and people standing at the back of the room! We were joined by family, mentors from our employer host sites, senior managers and volunteers.

I thought the atmosphere, the support and the experience of those ceremonies perfectly reinforced the message the founder of Easter Seals gave us nearly 100 years ago: “Your life and mine should be valued not by what we take… but by what we give.”

 

HBO movie “The Normal Heart” and our history with polio

I just saw a very powerful movie called The Normal Heart. Directed by Ryan Murphy and based on a play by Larry Kramer, the movie portrays the AIDS crisis in New York City in the early 1980s. I was immediately intrigued by the cast: Mark Ruffalo, Taylor Kitsch, Jim Parsons (whom we met at a Variety event last year) and my favorite, Julia Roberts, whose character uses a wheelchair.

Academy-award winning actress Julia Roberts plays a doctor who had polio as a child.

Academy-award winning actress Julia Roberts plays a doctor who had polio as a child.

Roberts plays Dr. Emma Brookner, a character based on Dr. Linda Laubenstein, a pioneer in AIDS research. When the AIDS epidemic started, Dr. Laubenstein was one of the very few doctors who treated people with AIDS. Laubenstein had severe asthma and weakness from childhood polio, an illness that required three major operations and left her paralyzed at age five. When Julia Roberts was interviewed about playing a character who had polio, she said, “This to me is a great reminder for all of us not to lose even a slight bit of our compassion toward one another.” Her story piqued my interest because it ties to what I have learned about Easter Seals’ history in treating people with polio.

In the early 1900s, the dramatic increase in polio cases caused the disease to be regarded as an epidemic. Thousands of children and adults were paralyzed by polio, and Easter Seals founder Edgar Allen raised funds and built a hospital where children with polio could stay and attend school classes. Children were also fitted with crutches and leg braces at the hospital.

Easter Seals still treClinic at Gates Hospital in Elyria, Ohio” width=ats people with post-polio syndrome: today, post-polio rehabilitation might involve help using braces, crutches, canes, wheelchairs and other adaptive equipment. Therapy might include regular exercise and help with flexibility, strengthening and conditioning exercises or modern therapies, like warm-water pools. I am proud to be part of an organization with such a rich history — and one that continues to provide exceptional services to people with disabilities and their families.

The Normal Heart premiered on May 25th, so you can still check it out on HBO.

 

5 great nonfiction books about disability written by kids

Our librarian is back! Last month Cynthia Fordham wrote a guest post with a list of some of her favorite fiction written from the perspective of young people with disabilities. This time she’s recommending non-fiction books written from the perspective of a child who has a disability.

Learn about disabilities from an expert’s point of view

by Cynthia Fordham

I have long been on the lookout for books by and for children with disabilities. If you look hard enough, they are out there! Here are five of my favorite non-fiction books written from the perspective of a child whose experience is colored by being differently abled.

  • How to Talk to an Autistic Kid by Daniel Stefanski (Free Spirit Publishing, 2011) is a social skills guide aimed at helping kids without autism get to know kids with autism. Daniel, 14, explains why kids with autism might not respond, make eye contact, repeat themselves, or stand too close. He explains these behaviors in a way that makes sense and won’t “scare off” other kids.
  • Leslie’s Story: A Book about a Girl with Mental Retardation by Martha McNey (Lerner, 1996) is one of a series of books published by Lerner that present first-person children’s accounts of disabilities. Leslie describes her daily activities, including being mainstreamed in middle school and how she feels about teasing. All of the books in this series are presented in a similar fashion, and the disabilities include autism, rheumatoid arthritis, blindness, and hearing impairment.
  • Blueberry Eyes by Monica Driscoll Beatty (Health Press, 1996) describes the experiences of Meagan, a little girl born with vision problems, including weak eye muscles and extreme farsightedness. The book addresses several vision issues, including wearing glasses and eye patches, or having eye muscle surgery. It describes the operation Meagan needed to see, and how she felt before, during, and after surgery. This book is comforting for a child facing different treatments for vision.
  • Taking Asthma to School by Kim Gosselin (JayJo Books, 1995) explains the basics of asthma. From medications to triggers to asthmatic episodes, this book provides plenty of information to educate children on playing with friends and schoolmates who have asthma.
  • Jumpin’ Johnny Get Back to Work!: A Child’s Guide to ADHD/Hyperactivity by Michael Gordon (GSI Publications, 1998) is an excellent explanation for children who are diagnosed with ADHD. The book presents everything from Johnny’s point of view, including behaviors, diagnosis, treatments, and tips to help stay focused, as well as how he felt throughout the entire process.

Some of these books are older, but every title is available. A search on the Internet should help locate them, and you may also want to see whether your local library has them. Enjoy!

Cynthia Fordham is a Children’s Librarian at the Woburn Public Library in Woburn, Mass. Her lifelong hearing impairment gives her first-hand knowledge of the challenges that go along with disabilities.

 

Not your ordinary graduation speech

June is the perfect month for this guest post by Megan Cauley, a Public Relations and Social Media Intern here at Easter Seals Headquarters.

He showed us!

by Megan Cauley

My 2013 graduation from Indiana University was a whirlwind and is already a distant memory: sitting next to friends, looking for family in the stands, working to get my decorated cap on the Jumbotron. With all these distractions, commencement speakers have their work cut out for them. Getting grads to simply make eye contact is an impressive feat, so I was surprised when friends who graduated from IU this year started sharing this year’s student commencement speech online.

What did this speaker say to get through all of the distractions and make such an impression on the graduating class? I finally watched the speech and found out. It wasn’t all about what he said. It was about how he said it, too.

Parker Mantell has a stutter (a type of speech disorder where an individual involuntarily repeats the first syllables of words) and opened his commencement address with an admission that he is far from the best orator. I didn’t have to listen long to discover that Mantell was being modest in his admission. He didn’t let his stutter prevent him from delivering a captivating speech with remarkable eloquence.

Mantell has worked for politicians in DC — conducting tours and even making outreach phone calls — despite his challenges with verbal speech. In his graduation address he urged his graduating class to take on challenges and not doubt themselves. He used famous historical figures with disabilities as examples, describing them as individuals who reached their full potential because they dared to dare themselves. “FDR couldn’t walk,” he says. “Imagine if he had never dared to run?” Mantell asked graduates to follow these figures rather than let doubt deprive the world of their talents.

It’s a very powerful speech, and what I liked most about it is that it works on three different levels: it’s a commencement address that encourages graduates to reach their full potential, it makes me proud to be a Hoosier, and it has a special message about individuals with disabilities. Watch the speech yourself and see what you think –society might try to manage the expectations of people with disabilities, but Mantell encourages all of us, whether we have disabilities or not, to ignore limitations and believe in possibility. When he took to the podium and delivered a commencement address to 17,000 people, Mantell did more than tell us what is possible. He showed us.

 

A man who is paralyzed talks about the opening kick in tomorrow’s World Cup

People around the globe will be watching the World Cup Opening Ceremony tomorrow to cheer on their country’s team, but I have a more personal reason to tune in: it’ll be my chance to see the real Avatar in action.

You remember the movie Avatar, right? The sci-fi film won three Oscars in 2009, and it showed Avatars – essentially, separate bodies – being controlled by the human brain.

In the movie, the controller of the Avatar enters a type of portal that looks like a tanning bed. Once they’re in there, the portal reads their brain waves, and then they can control the Avatar. During one of the first scenes, a man who is paralyzed from the waist down lies down in the portal, encompasses the ability to control his own Avatar, and can hardly contain his excitement.

It’s been so long since he was able to walk by himself that his brain is not used to controlling his legs. Initially he has trouble walking in the Avatar. It takes time for him to learn to walk and run again, but fairly quickly, he is running around the planet Pandora in the Avatar. It is absolutely incredible, and when I — a man who is paralyzed from the neck down — saw the character in the movie being able to lie down in this portal, and then control a fully functional body, I almost broke down in tears.

That scene in the movie had a profound impact on me. The idea of being able to perform functions — running, jumping, or skipping — by simply lying in a portal that would read my brainwaves. If only I could have that opportunity!

Now, five years after the film, the idea of being able to control a body with one’s mind is not just an idea produced by James Cameron, but it is a reality. In Brazil tomorrow a paralyzed man will roll onto the soccer field for the 2014 World Cup ceremonial opening kick in his wheelchair,. This man will rise from his chair, walk a few steps, and kick a soccer ball using a mind-controlled exoskeleton.

Let the shockwaves of excitement role throughout your veins: it is real! The ever driving determination to cure paralysis is an amazing endeavor, one that many scientists throughout the globe work day and night to accomplish, and one I hope for each and every day. There are many different ways to improve the lives of people with paralysis, but this is one of the most innovative creations I’ve seen.

The thought of this Walk Again project leaves a permanent brightness in my soul. To know there are people in this world that have the drive and determination to cure paralysis and improve the lives of people with disabilities is incredible.

With every single day, the world gets better, and we all take a few steps forward. This time, those steps forward just might be with the assistance of a mind controlled exoskeleton. What do you think of this invention? I know there are some who think that the effort might be promising too much, too soon, but leave no second guessing here — I’m in!

 

6 gift ideas for dads with kids who have disabilities

I am pleased to introduce Gary Dietz, the author and curator of Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them), as a guest blogger today.

Gift Certificates for a Dad of a Child Who Experiences a Disability

by Gary Dietz

Father’s Day is June 15 this year, and that’s just around the corner. Here are some of my suggestions for “Gift Certificates” you can customize to give to the special fathers in your life.

  • Certificate 1: Rediscover Your Pre-Fatherhood Self.

A few months ago, I spent late-night hours designing and frosting a “Lego” cake. I hadn’t done that in a long time. But damned if burning those midnight hours didn’t energize me when logic would say lack of sleep should have ruined the next day. This certificate entitles the father to at least 4 hours of “alone time” on one weekend each month to rediscover something he used to love to do, but no longer does.

  • Certificate 2: Safely Rant an Unreasonable Rant.

Some would consider explicit permission for a father to rant as selfish. But fathers need to safely blow off steam lest it become unhealthy. This certificate allows the father to go somewhere, preferably in the car with music blaring. It gives them permission to curse and scream or cry about their jealousy of other fathers whose daughters are graduating from Harvard with four job offers.
This certificate lets him know you support a nice healthy session steam release; that you understand that occasionally laughing or crying at the irony of their life’s reality is a good thing. Important note: If a father needs this too often, you should help him find a health professional or religious leader to talk with.

  • Certificate 3: Befriend a Father of a Different Generation.

This certificate entitles the father to enlist your help to do what you can to find a more experienced father of a child with a disability to talk with. The more experienced one will likely enjoy teaching. Or breathe a sigh of relief at how much better it is now than years ago. The less experienced one will learn that joys are ahead, not just challenge.

  • Certificate 4: Blow Your Own Horn.

This certificate entitles a father to a public or private note acknowledging how proud you are that he can do something amazing. One caveat: it has to be something he thinks is amazing, too.

  • Certificate 5: Forgive Yourself Your Mistakes.

We all make mistakes, and fathers are especially prone to beating themselves up about their mistakes. My suggestion? Make a lot of copies of the “get out of this mistake free” certificate and hand out these certificates liberally any time a dad says he made a mistake Caution: Don’t use this when you think he has made a mistake, wait until he says he thinks he made one.

  • Certificate 6: Don’t feel Guilty When You Spend Time with Your Other Kids.

Sometimes we need to adapt activities for the whole family, and other times we need to go off with just one child. Give this certificate to a dad with more than one child, and add words that absolve him of guilt for spending time with some of his kids while letting the others have their own fun.

Any other ideas? I’d love to hear them. Leave your good ideas as a comment here, but do it fast: Father’s Day will be here before we know it.