Making the arts accessible

by Beth Finke

Sound the trumpets! Here’s something I never dreamed would happen to me: I’ve been awarded a writing fellowship from the National Endowment for the Arts and am spending the month of April with 50 other poets, visual artists and writers at the Vermont Studio Center.

News about the fellowship got me wondering whether the National Endowment for the Arts has a history of working with people who have disabilities. I checked out their web site, and wow! Do they ever! an entire department of the NEA is dedicated to making the arts accessible.

The National Endowment for the Arts’ Office for Accessibility does a lot of things to accomplish its goals. When I checked out their web site their Careers in the Arts for People with Disabilities program really stood out. The program partners the U.S. Department of Education, Health & Human Services, and the Social Security Administration with the Kennedy Center for the Performing Arts to sponsor artists and arts administrators with disabilities, You can contact the Kennedy Center for more information on that program, and while you’re at it, why not check out a series of state-wide forums on Careers in the Arts, organized by UCLA’s National Arts and Disabilities Center, too.

I plan on taking a look at (okay, a listen to) these and other NEA programs for people with disabilities once I get a little more settled in here at my artist retreat in Vermont. What a privilege this is, I am truly grateful.

What it means to be a volunteer — Associate Board members weigh in

by Rachel Talen

It’s no secret I love volunteering. So I jumped at the chance to be involved with Easter Seals National Associate Board (NAB). Each member of the NAB makes a personal financial commitment to Easter Seals and then fundraises through their personal pages, social events and the companies they work for.

We’ve already had some pretty creative fundraising ideas this year, including:

• a raffle and ticketed networking event
• an accessible Wrigleyville rooftop night at a Cubs game
• a team of runners who raced from Madison, Wisc. across the Midwest to Chicago.

We only established NAB last summer, and the passion each board member has for Easter Seals grows with every interaction. This is National Volunteer Week, so I asked a couple NAB members what they had to say about volunteerism.

Mike Sandy — Chairman of the Easter Seals National Associate Board
Mike said, “It is an incredible honor to be part of the inaugural group for the NAB and I could not be happier to be involved with Easter Seals as an organization.” Mike met Melissa Hohimer from Easter Seals’ Finance Department when he was in graduate school. “I don’t believe I have ever met someone with more passion around their organization and its mission. She continuously spoke about Easter Seals and the type of work they were doing, which lead me to take a deeper look.” Mike has several friends with children who have autism and says the fact that Easter Seals is a leader in providing direct service to children with autism really resonated with him. ”Several of my friends completed tours in either Iraq or Afghanistan, so counseling and reintegration for returning veterans is also near and dear to my heart.”

After graduation, Mike was interested in putting his new found free time to good use. “So it seemed only natural that Easter Seals would be a perfect fit. The fact that the timing coincided with the establishment of the NAB couldn’t have worked out any better.”

Maria Mazza — Vice Chair of the Easter Seals National Associate Board
Maria said she decided to become involved with Easter Seals because of a long standing desire to give back to the community and her interest in working with an organization making a significant impact in the lives of children. “I’ve reached a point in life where I felt I had the time and resources to put my skills, energies and enthusiasm to use for an important cause,” she said. Maria is particularly interested in Easter Seals’ initiatives in the areas of early intervention and therapeutic services. “With such services facing increased demand, Easter Seals is playing an important role in helping children reach their potential. All children deserve in equal opportunity to succeed and Easter Seals is striving to help children in this regard.”

As a board member, not only has Maria had the opportunity to see how children and adults are benefitting from the extensive services provided by Easter Seals, but she has also had the opportunity to personally contribute to one of Easter Seals’ initiatives. “I recorded a PSA in Spanish about Make the First Five Count and the online screening tool created by Easter Seals for the assessment of potential developmental delays. I was truly honored by the opportunity and am excited about the upcoming events the NAB has planned for this year.”

Tell Congress — preserve funding for early intervention

by Katy Beh Neas

The 2013 Make the First Five Count Petition Drive starts this week on the heels of some good news! In his most recent budget, President Obama recommends an increase of $20 million for the federal early intervention program. We now need to convince Congress that this program, Part C of the Individuals with Disabilities Education Act, needs to be a high priority for our country.

Congress decides the funding level for this program each year, which means we need to sign the Make the First Five Count petition each year. So, if you signed the petition last year, you need to sign it again for it to help this year. Let’s break last year’s record of 40,000 signatures!

It’s very easy. All you have to do is link to our Make the First Five Count page and scroll to the bottom. Hit the “sign the petition” button and fill out your contact information. In less than two minutes, you can make your voice heard. Thank you — your voice really matters!

A view from the top

by Beth Finke

Eli Reimer is on top of the world. Late last month, the 15-year-old from Oregon made it to base camp on Mount Everest along with his father and friends. That’s 17,600 feet high, and Eli is the first teenager with Down syndrome to make that climb.

He and his team hiked through rocky, snowy terrain in below-freezing temperatures for 10 days to accomplish something really amazing. Eli’s father was at his son’s side on the 70-mile trek, and he reported Eli actually led the way at times. “We were dragging. We were experiencing our own sense of disability as we went up into the mountains,” he said. “He led us all the way to base camp.

Over 2,000 people from all over the country signed a card Easter Seals sent to congratulate Eli on his achievement, and we want to congratulate his family, friends and experienced guides here as well. Support like that is crucial for any person to achieve their dream, whether the dream is climbing the world’s tallest mountain or taking a first step during physical therapy. Way to go, Eli, and way to go, team!

Team Hoyt will keep doing marathons

by Rachel Talen

Here’s Kelly with another guest post.

Carrying his son in his arms

by Kelly Zatlin

During Monday’s terrible bombing at the Boston Marathon, many at Easter Seals and around the country were immediately concerned about the condition of Team Hoyt, the famous father and son marathon duo in which the father, Dick runs with his son Rick, who has Cerebral palsy. Being new here, I wasn’t aware until this week that The Hoyt Foundation is a partner with Easter Seals.

Thankfully, Team Hoyt remained unharmed. Just one mile from the finish line, they were told to stop because of an explosion. Not knowing what to do or where to go, the father and son were helped by a stranger who took them back to their hotel in his SUV. Dick had to carry his son into the hotel because Rick’s wheelchair got lost in the chaos of everything.

The Hoyts and the 30 other members running in support of Team Hoyt remained unharmed at the race. This was Team Hoyt’s 31st run in the Boston Marathon, and they are quick to say it won’t be their last.

While what happened in Boston taught us that there are some awful people in this world, it also taught us that there are some really fantastic people who want to help, serve and be there for others. Even now in this sad time after the 2013 Boston Marathon, Team Hoyt and the good that they do can be an inspiration to people around the country. The events of this week aren’t going to stop Team Hoyt from running marathons, and it’s not going to stop other athletes with disabilities from taking part in marathons and triathlons, either.

Parent-to-parent support on My Autism Team

by Patricia Wright

It has long been documented that parent support groups can benefit families raising a child with a disability. Social networking has moved these support communities to the web. The opportunity for parents to connect on the internet is providing one more avenue to garner the help needed to best support a family member with autism.

An online support group called My Autism Team describes itself like this:

A social network to make it easier for parents to connect with each other and exchange insights about providers. Our philosophy is to make it easy for all parents to get to the answers they need.

I’ve found My Autism Team to be a fantastic resource to parents raising a child with autism. Their site features four main sections:

• 1. Find Providers
• 2. Find Parents
• 3. Question & Answer
• 4. Activity

With more than 40,000 parents on the My Autism Team site, there is a wealth of expertise from other parents. Parent-to-parent support is important, and social networking provides another opportunity to build connections and a community of support. Check out My Autism Team and see if it’s a site that works for you.

Feeling right at home in the Willis Tower

by Beth Finke

Five years ago Easter Seals Headquarters moved from a smaller office in Chicago’s Loop to the Sears Tower (now called Willis Tower, the tallest building in North America. I’m not always the first to embrace change, and teaching my Seeing Eye dog to thread me through security, find the appropriate turnstile, locate which of the 90 elevators to take upstairs and find our way to our new cubicle was not easy. But hey, five years later, I gotta say: I feel right at home here.

Sounds like Willis Tower likes having us around, too: they’ve invited all the other tenants here to come hear Patricia Wright, Easter Seals National Director of Autism Services, give a lunch and learn at Willis Tower this Thursday, April 18. How gratifying it is to think that all the people working here at Willis Tower will have this opportunity to learn more about all we do at Easter Seals.

But wait, that’s not all. In addition to Patricia’s lunch and learn, Willis Tower has placed stanchion signs highlighting the Easter Seals mission in both the Wacker Drive and Franklin Street lobbies (I’m told they’re beautiful), They’ve placed Captivate ads in all of the building’s 90 elevators, and they’ve sent a message to the Tower’s database of more than 4,000 consumers inviting them to Patricia’s April 18th Lunch & Learn. I’m expecting a full house.

Thanks, Willis Tower. I was skeptical at first, but you’ve made us feel right at home.

Get a haircut, and help Easter Seals while you’re at it

by Beth Finke

Hey, get this: during the month of April you can get your hair cut and help Easter Seals at the same time! All month long, Hair Cuttery will match every donation made in its salons. Customers can donate in any Hair Cuttery salon to support Easter Seals, and Hair Cuttery will match those donations all the way up to $10,000.

Your donations at Hair Cuttery in April will go twice as far to help us Make the First Five Count to support Easter Seals services, early identification, early intervention and screening services.

Dennis Ratner, Founder and CEO of Ratner Companies, parent company of Hair Cuttery, pointed out in a press release that many Hair Cuttery associates have young children and know firsthand how important the early years are for their continued success in life. He’s right. The first five years of life really count, yet every year, more than a million young children with unidentified delays and disabilities enter school with learning and health issues that put them far behind their peers.

That’s why Easter Seals created Make the First Five Count®, to engage parents around the importance of early identification — because children only receive services when parents follow their instincts and take action early if something doesn’t feel quite right. And now, with your donations and Hair Cuttery’s support, Easter Seals will continue to help children and adults with disabilities receive important services so they can live, learn, work and play in their communities.

In addition to awareness … acceptance

by Patricia Wright

If you read my post last week, you know that April 2nd was World Autism Awareness Day and that the entire month of April is Autism Awareness Month.

Awareness is great, but maybe acceptance should be part of the message, too. The Autistic Self Advocacy Network (ASAN) is leading a campaign to emphasize the importance of moving from awareness to acceptance, and labeling April Autism Acceptance Month is part of this movement. From the ASAN web site:

Autism Acceptance Month is about challenging ignorance, prejudice, fear and hysteria about autism and autistic people.
Autism Acceptance Month spreads the word that autism is both a neurological disability and a natural part of human diversity, and centers the voices of autistic people in the conversation about us.

I would like to think that everyone already knows about autism, that we are done with awareness, but I know this isn’t true. I would like to think that acceptance is a given, that our society accepts all people with disabilities, but I know this isn’t true, either. Awareness and acceptance are both important.

Listening to Roger Ebert

by Beth Finke

It took a year for me to go from seeing spots to being completely blind. During those twelve months, my husband Mike and I were determined to keep doing all the things we’d enjoyed doing together when I still had 20/20 vision.

Going to movies, for example.

Early on I was still able to see Prince’s body in “Purple Rain.” I saw Darryl Hanna’s fin in “Splash.” I remember the round hat on the little Amish boy in “Witness.” My eyesight diminished farily quickly, though. Eventually the screen went totally black. Nothing the doctors could do. I gave up on movies.

But then film critic Roger Ebert started his Overlooked Film Festival in Urbana, Ill., where we were living at the time. The before-and-after lectures helped explain what everyone was seeing, making the overlooked films more accessible to people like me. My guess is Roger didn’t have people with disabilities in mind when he decided to host talks and panels before and after films there, but I’m sure he was pleased to know that those discussions turned out being “universal design.”

Roger Ebert’s Film Festival, affectionately known as “Ebertfest” by locals, helped me realize I can still appreciate movies. Among my favorite Ebertfest overlooked films: Murderball, The Secret of Roan Inish, and American Movie.

I was in the audience at another event that could have just as well been called “Ebertfest,” too: Access Living gave him a “Lead On!” award at their 2011 gala here in Chicago. Access Living is a disability advocacy organization, and the “Lead On!” award recognizes national leaders who have helped reframe the understanding of people with disabilities and who have helped to remove the barriers-physical and attitudinal-that exclude people with disabilities from career pursuits and everyday life.

Roger Ebert represented the very embodiment of what the award stands for. Thyroid cancer left him unable to speak. He had no lower jaw, and friends told me his face could be difficult to look at. Others might have stayed inside, slow down, retired. Not Roger. He kept on doing the work he loved-reviewing movies, blogging, Tweeting, attending film festivals, sending numerous entries into the New Yorker’s Cartoon Contest and continuing to manage his own festival, too.

Roger Ebert used a text-to-speech program called “Alex” to make presentations at film festivals and conferences. “For me, the Internet began as a useful tool and now has become something I rely on for my actual daily existence,” he told an audience at a 2011 Ted Conference, explaining why he considered himself fortunate to be born in this era. “[If this had happened before], I’d be isolated as a hermit; I’d be trapped inside my head. Because of the digital revolution, I have a voice, and I do not have to scream.”

Thank you for your courage and your fortitude, Mr. Ebert. We sure are going to miss you — all of us benefited from hearing your voice.