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

by Ben Trockman

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

by Beth Finke

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.

Horse power for people with disabilities: Therapeutic riding

by Elsa Remak

Throw on your floppy hat and grab an ice cold glass of sweet-tea. Tomorrow (6:35 p.m. Eastern Time on NBC) California Chrome is racing to be the first Triple Crown winner in 36 years. The legacy of California Chrome, a horse from humble beginnings, is quickly shaping up to be the feel-good sports story of the summer. His background sounds like something right out of Hollywood:

• California Chrome was purchased by a naïve, yet hopeful duo in 2008.
• His jockey, Victor Espinoza, grew up learning to ride on donkeys in Mexico.
• Chrome’s trainer, 77-year-old Art Sherman, is the oldest trainer to ever win the Derby.

The inspirational story of California Chrome is just one of many involving our four legged friends. Outside of the racing spotlight, horses provide joy and excitement to humans in other ways, too: they nurture and give confidence to people living with disabilities.

In 1961, Danish athlete Lis Hartel became the first woman to win an Olympic medal in the equestrian sports. Hartel had been diagnosed with polio 17 years prior to her big win, and even though she was paralyzed from the knees down, her perseverance and strong will led her to Olympic history: she’s credited as the inspiration behind therapeutic riding.

A disability is not a limitation for horseback riding. Horseback riding offers many physical, emotional and social benefits for people of all abilities. As a summer camp kid, horseback riding was my favorite activity. I loved the liberating feeling of wind blowing in my hair as I took in the great outdoors.

This soothing movement of horseback riding has physical benefits for people living with disabilities. Horseback riding rhythmically moves the rider’s body in a manner similar to a human pace. Riders with physical disabilities often show improvement in flexibility, balance and muscle strength after they work with horses.

In addition to physical benefits, therapeutic riding provides emotional and social benefits for developing children. It can improve self-esteem and self-confidence in the children who ride them, promote communication and interpersonal skills and develop neuro-motor function and sensory processing. Last, but not least, riding promotes another crucial characteristic…fun!

Get more information on Easter Seals Western and Central Pennsylvania’s fabulous horseback riding program.

Why you should eat cookies for Easter Seals

by Beth Finke

Everyone loves to indulge in a tasty cookie from time to time, and this month Sweet Tomatoes & Souplantation are making their already delicious cookies even harder to resist.

Here’s the, ahem, skinny: Sweet Tomatoes & Souplantation restaurants will donate $1 to Easter Seals for each bag of homemade cookies sold in June. Plus, restaurant guests will also receive a coupon to redeem at a future visit as a thank you for their cookie purchase.

Sweet Tomatoes & Souplantation are offering the cookie campaign for Easter Seals in ALL of their 126 restaurants across the nation. With the help of generous consumers, 21 Easter Seals affiliate organizations will benefit from this year’s campaign.

Sweet Tomatoes has supported Easter Seals for seven years and has raised nearly $218,000 in support of Easter Seals families. Donations collected from the campaign support Easter Seals programs for children and adults with disabilities.

If you ask me, this is a pretty sweet deal. Agree? Then heck, head over to a Sweet Tomatoes & Souplantation restaurant and treat yourself to a bag of homemade cookies without feeling guilty! Every time you, your friends and family visit in June, you can help support Easter Seals programs in your community.

Related Information:

If you don’t live near a Sweet Tomatoes & Souplantation restaurant but want to support Easter Seals, here are some other ways to give your support.

Driving with your eyes closed

by Beth Finke

I lost my sight when I was 26. Adjusting to life without sight wasn’t easy. In the end, my husband Mike and I decided to move somewhere I wouldn’t need a car to get around. Now we live in a neighborhood in Chicago so close to downtown that I can walk or take a train or bus just about anywhere I want to go. Parking costs a lot here, so a lot of my neighbors who can see don’t have cars, either.

Fact is, even when I could see, I was a bad driver. I miss my bicycle more than I miss having a car. I’m in the minority, though—when I talk with others who have visual impairments, especially ones who live in the suburbs, driving is #1 on their “Things I Miss” list.

So I’m glad Google is thinking of people who are blind or have other disabilities while they work on their Google self-directing vehicle project. A post called “Just press go: designing a self-driving vehicle” that was published on the Official Google blog last week links to a YouTube video of people test-driving the prototype, and I think one of the test-drivers has a disability. Without being able to see the video, I can’t be absolutely sure of that. I heard him praising the self-directed vehicle for how it’d give him back some of the things that had been taken away from him, though, and that’s why I’m guessing he became disabled somehow.

I couldn’t find any options on last week’s video to add special narration to help me understand what was happening on the screen, so guess where I turned to try and figure it out? I Googled!

Turns out a man who is blind already test-drove a prototype back in March. (Maybe that’s the guy in last week’s video, too?) Months ago Google asked Steve Mahan, the head of the Santa Clara Valley Blind Center in California, to take the wheel. The video of his test ride was posted on Google+ back then, and that video comes with special audio captions so I could understand exactly what was going on.

Steve Mahan makes the journey without having to touch the wheel or pedals. An array of video, radar and laser sensors constantly scan the road for him. Passengers told him when they’d stopped at a stop sign, and Mahan’s gleeful exclamations showed how much he was enjoying the ride.

That March video focused on Steve Mahan, so he had a lot of time to talk. He said self-driving cars could make a huge difference to the lives of people with disabilities.  “There are some places you cannot go, some things that you really cannot do,” he said. “Where this would change my life is to give me the independence, and the flexibility, to go to the places I both want to go and need to go when I need to do those things.”

So like I say, I appreciate the attention Google is giving to people with disabilities when working on the car that drives itself, and hey, the technology is wayyyyyyy cool! I’m just disappointed they don’t use the cool narration technology they already have and add audio captions to all their videos. Those of us with disabilities like to do whatever we can independently. It’s obvious that Steve Mahan enjoyed driving without asking a friend for help. I enjoy doing my job here at Easter Seals without needing assistance from others, too. I could have asked a sighted colleague to describe the people in that Just Press Go video, but as long as the audio caption technology exists, then I don’t have to. I wish more video producers would offer that option.

Related Resources on Easterseals.com

• If you could use assistance or resources for getting around, Easter Seals could help.

Suicide warning signs and a crisis hotline

by Beth Finke

Just 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.

May is Mental Health Month, and before the month is over I thought I’d share a guest post the Veterans Health Administration’s Office of Health Information asked her to write 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. In her guest blog post, she describes how the Veterans Crisis Line is helping: Veterans or anyone concerned about a veteran may call 1-800-273-8255 and Press 1, chat online at www.VeteransCrisisLine.net or text 838255 to receive support.

Since its launch in 2007, the Veterans Crisis Line has answered more than 650,000 calls and made more than 23,000 life-saving rescues. In 2009, the Veterans Crisis Line added the anonymous chat service, which has helped more than 65,000 people.

Today Sue 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. She 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.”

Related Resources:

• Easter Seals’ recommended resources for military personnel and veterans
• How Easter Seals and the Brain Plasticity Institute are working together to research major depressive disorder (MDD)

“Every day is Memorial Day to me”

by Col. David Sutherland

We honor Staff Sgt. Donnie D. Dixon, killed in action in 2007

Last Tuesday I got into work late. I’d been visiting Section 60 at Arlington Cemetery.

While others celebrated Memorial Day this past Monday, the truth is that every day is Memorial Day to me. I stood side-by-side with men and women who are no longer with us, who were so dedicated to their mission and our country that they put it over their own lives. I am the chairman of Easter Seals Dixon Center for Military and Veterans Services.  Easter Seals Dixon Center is named after U.S. Army Staff Sergeant Donnie D. Dixon, who was killed in action in Balour, Iraq, while protecting me.

So while it’s appropriate and right to designate a day to remember those who have been killed in the line of duty, I would like to suggest that we think about it more than just once a year.

We can do this by honoring the families of the fallen and the battle buddies left behind:

•    One of the best ways to honor the memory of a veteran who is no longer with us is to acknowledge that they’ve left loved ones behind who may need some assistance reintegrating into the community. Get to know them. Sit down with these remarkable survivors and simply listen, one-on-one.

•    Support legislation like the post-9/11 GI Bill and many state laws that enable spouses and children of deceased service members to get an education.

•    Put up a flag to honor our country and those who have served it.

•    Get personal. If you know a military family, offer to help babysit or watch the kids one weekend afternoon to give mom or dad a much-needed break.

•    Use your network. Encourage your contacts to be inclusive of opportunities for veterans, military families and families of the fallen, whether it is through employment or support by faith-based and nonprofit social sector organizations.

One of my favorite books is Red Badge of Courage, the story of young Private Henry Fleming, a new soldier who experiences his first battle during the Civil War. I love this passage:

“So it came to pass that as he trudged from the place of blood and wrath his soul changed. He had been to touch the Great Death and found that, after all, it was but the Great Death. Scars faded as flowers and the youth saw that the world was a world for him. He had rid himself of the red sickness of battle and the sultry nightmare was in the past. He turned now with a lover’s thirst to images of tranquil skies, fresh meadows, cool brooks, an existence of soft and eternal peace.”

Private Fleming was lucky to have worked through this transition on the battlefield. Our current veterans and military families may require more time—and it has to be done within the context of community.

So this week, as we return from the Memorial Day weekend and close out Military Appreciation Month, let’s work to make that shift a smooth one.

5 children’s stories written by characters with disabilities

by Beth Finke

Cynthia Fordham is a Children’s Librarian at the Woburn Public Library in Woburn, Mass., and her lifelong hearing impairment gives her first-hand knowledge of the challenges that go along with disabilities. Cynthia left such an insightful comment to a post I’d written about children’s books that I invited her to write a couple guest blogs for us. Here she is with a list of fiction written from the perspective of young people with disabilities.

A character with a disability’s point of view

by Cynthia Fordham

As a children’s librarian who has previously worked as a rehabilitation counselor and a teacher, I have long been on the lookout for books by and for children with disabilities. If you look hard enough, they are out there, and every year the numbers increase! Here are five of my favorite fiction books told in the first person by children whose experience is colored by being differently abled.

• It’s OK to Be Me!: Just Like You, I Can Do Anything! by Jennifer Moore-Malinos (Barron’s, 2007) ISBN: 0764135848. This picture book features Adrian, who uses a wheelchair. He notices that other kids are friendly, but that they don’t include him in their games. By practicing, he learns how to use his chair to be more mobile, and learns to move and maneuver so that he can play basketball. Figuring out how to do the same things other kids like to do gives him the opportunity to be included.
• A Screaming Kind of Day by Rachna Gilmore (Fitzhenry and Whiteside, 1999) ISBN: 1550416618. This picture book describes Scully’s day, from typical sibling rivalry, to her frustration at not getting to play in the rain (even though she will keep her hearing aids dry!), to sneaking out and getting grounded, then finally finding the peace with her family she had been hoping for. Scully has a hearing loss, and she is able to compensate by using her other senses, and shows that she is an ordinary little girl with the same ordinary problems as any little sister and young child in a family.
• An Utterly Unique: Celebrating the Strengths of Children with Asperger’s Syndrome and High-Functioning Autism by Elaine Marie Larson (AAUP: Autism Asperger’s Publishing Co., 2006) ISBN: 1931282897. This is a rollicking alphabet book that accentuates the child’s best qualities: such as “I am a Detail Detective;” and “I have Enormous Enthusiasm.” Pictures are simple, with bold outlines and great color.
• Hank Zipzer: The World’s Greatest Underachiever is a partly autobiographical series of books written by actor Henry Winkler. Readers enter the world of Hank Zipzer, a kid with a learning disability. These are funny adventures that will be greatly enjoyed by students in grades 3-5. The series is published by Grosset & Dunlap.
• Wonder by R.J. Palacio, is told from several points of view, starting with Auggie, born with a severe facial deformity, who is beginning middle school after being home-schooled all his life. The book begins and ends with his observations and experiences, while middle chapters are told from other people’s point of view: his sister, his sister’s boyfriend, his friends at school, and others with whom he interacts. The characters are vivid, situations realistic and sometimes unexpected, the story well-paced, and the ending is satisfying. Published by Alfred A. Knopf in 2012, this is a must read for students in grades 5-8.

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

*Beth here again, and I have good news: Cynthia Fordham will be back soon with a guest post sharing a list of her recommended non-fiction books written from the perspective of children who have disabilities. In the meantime, I suggest you take her advice and head over to the library for one of the books on today’s list. Some are even available in audio versions—I just used the Library of Congress Braille and talking-book service to download “Wonder” for Free” from the National Library Service for the Blind and Physically Handicapped.

3 travel accessibility kits for your summer vacation

by Beth Finke

Memorial Day is this weekend and that marks the beginning of the summer travel season. Easter Seals is headquartered in Chicago, and my co-workers and I know firsthand that O’Hare International Airport can be an overwhelming sensory experience for anyone, let alone someone with special needs.

Take our son Gus, for example. He has significant physical and mental disabilities, he’s 27 years old now, and he’s only flown with us twice. The first time, he was 2 years old. After the second time, when Gus was 10 years old, we vowed he’d never fly with us again.

Me and Gus

Maybe we’ll rethink that vow now, though: the Autism Program of Illinois, Have Dreams and The Hope Institute for Children and Families have come together to create aviation accessibility kits they say could make the trip from ticket counter, through security, on to the gate and into the air easier for people with disabilities.

The kits lay out the steps involved in moving through an airport in words and pictures. They were made with the help of the Chicago Department of Aviation but are intended for use at many other airports across the country. The site also has links to a medical accessibility kit, library accessibility kits, and an accessibility kit for the Chicago Children’s Museum.

So like I said, who knows, maybe it’s worth another try. Airline tickets are getting more and more expensive, but hey, I can download the aviation accessibility kits for free. And if we decide on a staycation instead, we can check out a local library, or maybe the Chicago Children’s Museum.

Comcast Foundation assistive technology grants

by Rachel Talen

I’m pleased to introduce Charisse Lillie as a guest blogger today – she’s Vice President of Community Investment at Comcast Corporation and President of the Comcast Foundation, too.

Comcast’s assistive technology grants making an impact at Easter Seals affiliates

by Charisse R. Lillie

Assistive technology can improve the quality of life for people living with disabilities and special needs, and over the past two years the Comcast Foundation has helped Easter Seals make a big difference in the lives of nearly 25,000 Americans living with disabilities through our assistive technology grants.

One grant helped Javier, a 17-year-old with Down syndrome who receives services at Easter Seals South Florida. Javier was nonverbal and had a hard time communicating with his family or peers until he received an assistive device, made possible in part by one of our Comcast Foundation grants. The assistive device allows Javier to communicate through visual cues. Javier uses it to help him say his name, describe his feelings, and ultimately interact with others around him. His Downs syndrome diagnosis is pretty severe—he may never learn to read or write—but his newfound ability to communicate, along with his participation in Easter Seals’ Culinary Arts program, have provided him an opportunity for a brighter future. He hopes to have a job in a kitchen one day.

In another program at Easter Seals Southeastern Pennsylvania, teachers and therapists are being trained to incorporate iPads into the classroom to help students with autism improve their communications skills. The computers and tablets used as part of the Easter Seals’ Job Corps program have also been enhanced with speech and visual feedback that will help participants develop skills to use in educational settings, vocational programs or in their personal lives.

We are grateful that Easter Seals has been lending their expertise to Comcast in a variety of ways as we focus on making our technologies accessible to the widest possible audiences. Easter Seals work as a testing group for products and services we are adapting for individuals with special needs has been extremely helpful. Easter Seals is also providing guidance on accessibility and disability sensitivity training at Comcast locations and Universal Theme Parks. Easter Seals is a strong supporter of our Internet Essentials program and Comcast Cares Day.

We are inspired by stories like Javier’s, and in 2013 we announced a national partnership with Easter Seals—pledging $6.3 million in cash and in-kind over two years to continue to help with assistive technology efforts—and now we’re looking forward to announcing the 2014 Easter Seals affiliates who will be receiving new grants this year. Comcast is dedicated to championing the needs of diverse communities. Our partnership with Easter Seals enables us to help make a positive impact across our footprint, one person at a time.