I got 99 problems…palsy is just one

A friend read that post I wrote last Monday (you know, the one about the new TV sitcom about growing up with a father who is blind) and told me she was disappointed that NBC didn’t hire a blind actor for the starring role. My friend doesn’t have a disability herself, but she had recently seen a Ted Talk by female stand-up comic Maysoon Zayid called “I Got 99 Problems…Palsy is Just One”, and the video made her much more aware of the lack of Hollywood roles for actors with disabilities.

Maysoon Zayid has cerebral palsy. She studied theater at Arizona State University (ASU) but gave up her dream to become an actress after repeatedly being passed over for roles.

Even when ASU produced And They Dance Real Slow in Jackson, a play about a girl who has physical disabilities growing up in a small (and small-minded) town, Zayid didn’t get the lead. “This is a part I was literally born to play,” she says, lamenting that they cast an able-bodied theater student instead. “They didn’t think I could do the stunts, but excuse me, if I can’t do the stunts, neither can the character!”

Zayid says in her Ted Talk that she realized very, very quickly that Hollywood doesn’t have a place for “fluffy ethnic disabled people” like her. The only female stars she could think of who made it to the top without conventional cover girl looks were comediennes. Whoopi Goldberg. Rosie O’Donnell. Roseanne Barr. So she turned to comedy.

Her Ted Talk opens with a lot of shtick. Example: she tells the audience she knows they’ve all dreamed of having a disability. The crowd gasps. Then it goes dead quiet. Zayid continues, asking them to pretend they’re going around and around a shopping mall parking lot on Christmas Eve and passing by all those empty handicapped parking spots, and…the crowd laughs in agreement.

Zayid gets serious at the end, though, pointing out the double standards and cruelty that still exist regarding people with disabilities. She says she was never made fun of when she was growing up, but now the internet allows people to be cruel and ugly with comments about her. She also asserts that if Hollywood won’t hire actors with disabilities for everyday roles, than they ought to stop casting able-bodied actors into roles as people with disabilities. “If a wheelchair user can’t play Beyoncé, then Beyoncé can’t play a wheelchair user,” she shrugs.

Tune in to the Ted Talk video yourself, and see if you don’t end up agreeing with Zayid when she insists, “We need to create more positive images of people with disabilities in the media.”

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A podcast on disabilities from an insider

Special Chronicles podcast logoI have Wade Wingler (an assistive technology professional at Easter Seals Crossroads in Indianapolis) to thank for introducing me to Daniel Smorokowski. Mr. Smorokowski is a journalist and public speaker, but he’s best known as a podcaster. His Special Chronicles podcast is a talk and interview style audio podcast that educates and informs others about people with disabilities, and his stories cover everything from friends with disabilities (I especially like his interview with Georgia Hunter and the one with Breanna Bogucki) to the Special Olympics work in Albania.

 Mr. SmorokowskiWhen I first met Mr. Smorokowski, I asked him why he started his Special Chronicles podcast in the first place. “I’m podcasting from an insider’s perspective,” he said with a shrug. After that quick, clear-cut answer, he shared more details.

Mr. Smorokowski was 3½ when he was diagnosed with a learning disability as well as a speech disorder. This means it can take him longer than others to process information. His speech disorder manifests as a stutter, which made him the object of bullying and ridicule when he was growing up.

He was in both special education and general education classes in high school and sensed a general lack of understanding of the challenges that people with disabilities experience. He thought the podcast medium would be a great way to educate the public and promote acceptance and understanding. He said, “All of the listeners can focus on hearing our voices and they will include us when they hear our stories.”

The Special Chronicles does indeed send a message of inclusion. Storytelling has a long history of being a powerful communication strategy, and podcasting allows worldwide access to personal stories. Check out Special Chronicles to hear Mr. Smorokowski’s stories and join in on his message of the power of acceptance and inclusion.

Related Resources:

Understanding speech and hearing therapy on Easterseals.com

 

Why I didn’t watch that TV show about the dad who is blind

Did you see the debut of that new TV comedy last night about a father who is blind? I sure didn’t.

That wasn’t meant as a joke, but the way NBC has been promoting the show, I wonder if that’s the sort of humor they’ll be using in the new comedy Growing Up Fisher. When I said I didn’t see the debut, I meant I didn’t hear the show, either. We turned the TV off after the closing ceremonies for the Winter Olympics last night.

Growing Up Fisher has very talented people like Jason Bateman (executive producer) and David Schwimmer (director) behind it, and J.K. Simmons, a fine actor, plays the dad who is blind. It could be good, but if those commercials with the dad blindly wielding a chainsaw and driving a car are any indication, I doubt it.

I’ve run across plenty of people raised by dads who are blind, and they have interesting stories to tell. That’s Bob Ringwald, Molly’s father (pictured). So let’s start with Molly Ringwald. You know, the actress in all those John Hughes movies in the 1980s? Her father is blind. My brother Doug is a professional jazz trombonist, and he introduced me to Molly’s dad Bob Ringwald, a talented professional jazz pianist, years ago. Molly has written a few novels, and she was asked about her dad during an NPR interview about her books. She told Scott Simon that as a child she enjoyed sitting with him during movies and plays to describe the action. “I actually think that that informed my writing,” she said. “That’s something that I’ve done for so long, that it’s made me, perhaps, observe things in a different way.”

And then there’s Gore Vidal. After the famous writer and critic died in 2012, Bob Edwards Weekend replayed an interview conducted at Vidal’s home in Los Angeles in 2006. Vidal was raised by his grandfather, a U.S. Senator from Oklahoma. Sen. Thomas Gore was blind, and Vidal was 10 years old when he started reading to him. “I read grown-up books to him: constitutional law, the Congressional Record, American history, poetry,” Vidal said. ”He was extraordinary, he was my education.” Vidal guided his grandfather to Senate hearings, and he said he didn’t dare fall asleep while sitting in the balcony waiting for the session to be over—at any moment his grandfather might give a hand signal to let young Vidal know to skedaddle down the Senate stairs to guide him to the bathroom.

Growing up with a father who is blind can be interesting, and funny, too, at times. A live performance of This American Life opened with Vancouver writer Ryan Knighton telling a story about a walk in the woods he took alone with his young daughter. Knighton is blind, and when she started screaming about a bear, he panicked. After weighing his options, he realized that her frantic cries of “bear!” were only in reaction to dropping her teddy bear on the ground. Knighton’s most recent book C’mon Papa: Dispatches from a Dad in the Dark is full of funny—and frightening—stories of his first years as a father. His daughter Tes is seven years old now, and I’m sure she has some very entertaining stories to tell.

So that’s why I skipped Growing Up Fisher last night. With true and engaging accounts like these of fathers who can’t see, who needs fiction? If you watched Growing Up Fisher last night and liked — or didn’t like — what you saw, I hope you’ll consider leaving a comment here and let me know what I missed.

 

Fly fishing lessons

It’s been dreadfully cold here in Chicago this year, but that doesn’t stop me from looking forward to my spring fly fishing trip to the icy waters of Montana. Fly fishing is a passion of mine. I love everything about it. The freedom, the independence, the skill, being waist deep in the frigid water…all of it is very appealing to me.

I was figuring out which flies and what equipment I needed to bring along on my trip this year, and it made me think of a picture I saw once of a young man fly fishing from his wheelchair. He was out in the river doing the same things that I love to do, but just doing it from a wheelchair. It was pretty amazing to see the photo. It made me think about our similarities and not our differences. I stand in the water…he sits. We’re both doing the same thing, enjoying the same experience, and probably suffering the same indignation of a trout taking and throwing the fly in the very same way.

I also thought about the barriers that stand in the way of people doing the things that they love. Those barriers can be physical or attitudinal. And they can also be overcome.

I don’t know the man in the photo, and I don’t think he’s ever received services from Easter Seals, but studying this photo of him in the water reminded me how important it is to do all we can to help people achieve their goals and dreams. In this instance, it was a guy trying to catch a trout. That may not sound like a big deal, but for us fly fishers, it’s pretty important.

Explore all of Easter Seals programs here.

 

Looking for an internship?

Project Search logo: stylized person juggling moon, stars and sunDuring his State of the State address last month, Governor Scott Walker proclaimed 2014 as the year for a Better Bottom Line here in Wisconsin and singled out the Project SEARCH program as a leader in finding employment for those with disabilities.

Project SEARCH partners local employers, schools and local non-profits to provide nine-month internships for young men and women who have disabilities. The interns work at a local employer and learn transferable and marketable jobs skills with the support of job coaches and a teacher.

The first Project SEARCH site was in Cincinnati’s Children’s Hospital. Now there are over 300 Project SEARCH sites around the world, and Easter Seals Southeast Wisconsin partnered with ProHealth Care, Children’s Hospital of Wisconsin and the Department of Workforce Development to create two of them right here, in Waukesha and Milwaukee Counties.

This school year we have 24 interns learning critical jobs skills. Over 70% of our interns have found employment after completing their internships, and we’re not done yet. Governor Walker said he wants to triple the number of Project SEARCH sites in the next three years, and Easter Seals Southeast Wisconsin is talking with local employers about opening two new sites in the 2015 school year. People with disabilities have so much to offer as employees. With our workforce aging, we need to tap into the potential of all types of people, growing their skills, providing mentors and creating a culture of learning and development. Hiring people with disabilities benefits the employees, the employers, and the community. Governor Walker said it best when explaining that his Better Bottom Line initiative is not about charity. “I often hear from employers that people with disabilities are among the most dedicated, dependable, and hard-working individuals on their staff,” he said. “This year, we will focus on building these opportunities and recognizing what a great asset people with disabilities are in the workplace.”

 

What’s love got to do with it? Everything!

Here’s another guest post by Katie Banister, the founder of Access 4 All, an organization providing disability education programs and presentations.

Katie’s Korner

by Katie Rodriguez Banister

Soul singer Tina Turner belts it out in a 1980’s pop hit: What’s love got to do with it? If you ask me, the answer is… EVERYTHING! I have always been in love with love: the concept, the courtship and all that goes with it. I am a girlie girl and will be until the day my wheels stop rolling.

I was born with legs that walked but in 1990 I survived a roll-over accident in my friend’s Samurai, a mini SUV. The accident left me a C5-C6 quadriplegic. Early on I thought, “Who is going to want me in this condition? I’ll spare you the therapists notes, but with their help, and by writing my own poetry and stories down on paper, I can now share my journey of how it took a wheelchair to find the man I love.

Steve is an incredible man, and I am in the healthiest relationship ever. Our road to today has been paved with patience and kindness. Steve wanted a girlfriend early on, but I wasn’t ready. He would try to put his arm on the back of my wheelchair but I would turn really fast before it could land. In fact, Steve waited a year and a half for a kiss — this man is patient!

I needed to take my time because I didn’t love myself, and you can’t fully love someone until you love yourself first. We’ve been together for 20 years now, and whether you observe Valentine’s Day or not, rest assured that thinking and making decisions from your heart will lead you to loving conclusions.

Recently I ran into a past boyfriend (Steve never felt threatened by this guy, no worries) and he said what I love to hear from people in my past: “My God, Katie, you are still the same!” I do not believe my accident happened for a reason, but I do believe things happen and you make reason of them. Yes, I’m still the same, but at the same time, oh, so different. Yet, with all that happened, I can honestly say, “I love myself” and mean it. I wish that for you, too.

Read our collection of stories and tips on dating and relationships here.

 

Honto ni suki des means I love you in Japanese

Sometimes, I get frustrated. It’s understandable in some situations, and in the one I’m about to tell you about…it was more than acceptable.

With all the recent snow, there hasn’t been any real shoveling in the tiny alley behind the condo that Mr. B (my boyfriend) lives in. Snow piled up. I couldn’t move my car. I couldn’t leave. I felt truly and utterly trapped, and I could feel myself shutting down.

I’m not necessarily bad in stressful situations. I’m rather decent, really. It’s just that the auditory and language disabilities I have make it extremely important that I be in a calm and sober state of mind in order to communicate with others. And no matter how much speech therapy I’ve had and no matter how many times I’ve been told to “use my words,” well, some situations are just guaranteed to make everything shut down.

That night in the snow was one of those situations. All I could do was stare dumbly at my car, now blocking the alley and stuck in a snow mound. Mr. B always watches me leave to make sure I get out safely, and as I tried to get my car unstuck, he looked sympathetic. When I turned off the car, he understood. He went back into the condo and returned with hot steaming water and a shovel. I started to dig my car out and he splashed the snow under the tires with the water. We didn’t need words.

Once we’d done all we could, I surrendered the keys to him (I was ready to admit defeat) and let him try to pull out. Success!

He grinned from the driver’s seat when I went to give him a hug. I kissed my new hero of the day and said thank you. “Honto ni suki des!” I explained. That phrase means “I love you” in Japanese. It’s a bit of a running joke between us.

I drove off then, and I could still feel the smile of his lips against mine at home hours later. It’s so important to have communication in a relationship, and having disabilities like the silent ones I have require additional patience from both of us. Mr. B has learned to understand when it’s a good time to offer alternative words, and when it is best to keep quiet. I’ve learned to control my temper when I’m frustrated with myself. We will have our spats now and then. But at the end of the day, we understand each other, even when words become elusive and silent. That means so much to me. Happy Valentine’s Day, Mr. B. Honto ni suki des!

Read our whole collection of love stories at easterseals.com/love!

 

But how? A guest blog on intimacy

As part of our Valentine’s Week stories on love and romance, we’re featuring a guest post by Katie Banister, the founder of Access 4 All, an organization providing disability education programs and presentations.

But How?

by Katie Rodriguez Banister

Disability or no disability, intimacy is more than just “tab A into slot B.” Intimacy takes courage, communication and creativity. It means stepping out of your comfortable zone and into a zone that can make you soar. I know this firsthand. The benefit of meeting the right person at the right time—a man who was willing to wait until I was ready to explore this delicate part of a relationship—was priceless.

When you see, hear or think about the word “sex” coupled with “disability,” one of the first questions that comes to mind is, “But how?” For me, a quadriplegic, and my husband, a nondisabled man, we can still become intimate the old “tab A & B” way, but I don’t derive the same physical enjoyment from that method that I used to before my auto accident. That accident took away the feeling in my nether regions, but I know the old “tab A & B” way pleases my partner, and I believe ya gotta be a team player.

Like other couples, especially those in long-term relationships, you can’t go wrong with a good shoulder massage or an awesome head-scratch. Want to make me really happy? Clean the house! (You neat-freaks like me out there in blogland know exactly what I’m talking about.)

Seriously, if you want to add some sizzle to your relationship, close the blinds, light a few candles around the room, turn on some R&B and chill. I meant what I said about the head and shoulders. They are the parts of my body that have become super sensitized. I concentrate on what feeling I have.

Sure, I miss the past. The past is gone, so I focus on the present. I keep myself pretty busy, but then my husband reminds me that all work and no play is not the way to live. So if you are honoring February 14th as a way to recognize the one you care deeply for, make time for them. Maybe a simple meal by candle light, with snuggles after. And if you are an independent heart? Recognize the love that you have for yourself, for when you love yourself, then love can come to you.

 

Love is blind—for real!

That's Mike and me on our Wedding day in 1984. This year we'll celebrate our 30th anniversary. (Photo by Rick Amodt.) That’s Mike and me on our wedding day. This year we’ll celebrate our 30th anniversary. (Photo by Rick Amodt.) I was 25 years old and on my honeymoon when the spots first showed up. “Retinopathy,” the eye specialist back home told us. Laser treatments and eye surgeries didn’t help. A year later, I was blind.

I ended up writing a book about how life changed for me after I lost my sight, and before University of Illinois Press would publish it, they had a couple editors go over my manuscript and suggest changes. I actually enjoyed being edited. Professionals would ask me to choose the exact word to describe something, and that would force me to put myself back into a situation and really think hard about what it felt like at the time. Not always easy, but very therapeutic.

Example: In one scene from my original rough draft, a retina specialist examines my eyes after all the surgeries and breaks the news to my husband Mike and me. He tells us I’ll never see again, we listen, and then we walk out of the office and head to White Sox Park for an afternoon baseball game.

University of Illinois Press editors read that, and they said I absolutely must tell my readers what was going through my head when we found out my blindness was permanent. I didn’t exactly want to describe that time of my life in detail: doing so would force me to put myself back in that room hearing that bad news again. I did it, though. Writing that scene turned out to be GREAT therapy. I had to think. When I was told I’d never see again, was I disappointed? Angry? Sad? Scared? The answer is here, in an excerpt from my memoir, Long Time, No See (University of Illinois Press, 2003):

“I’m afraid there’s nothing else we can do,” he said in a tone I recognized from his final report on my left eye.
All I could think to ask was, “Can I lift my head up now?”
He said I could. Thankful for at least that, I raised my head for the first time in over a month. I was struck by a sudden feeling of freedom and relief. No more lasers, no more operations, no more weekly visits to Chicago, no more worrying whether or not this all was going to work. We’d been at this for nearly a year; now it was finally over. I swiveled my head as if to look around. I saw nothing. Mike talked to the doctor, asking sensible questions, I suppose. Turning toward their voices, I asked if this was really it, if we’d really exhausted the possibilities. “I’m a religious man,” the doctor answered, “and in the religion I follow we believe in miracles. I believe God has cured all sorts of ailments. This could happen with you, but there’s nothing else I can do for you medically.”
We stood up to leave. I reached out for the doctor’s hand. He clasped mine with both of his, and I thanked him for all he’d done. He was shaking. I felt sorry for him; I would’ve liked to tell him we were going to be all right.
The White Sox were in town that day. Going to a ballgame after learning I’d be blind for the rest of my life was probably a strange thing to do, but it beat heading home and sitting on our pitiful second-hand couch and wondering where to turn next.
The White Sox were having a rotten year. There were maybe 8,000 people in the stands; Floyd Banister pitched, the Sox lost. But it was strangely pleasant, sitting next to Mike with my head up, not giving a thought to eyes or surgery. We each had a bratwurst and a beer. Between bites and gulps and giving me play by play, Mike bantered with other fans, cursing the underachievers on the team. I laughed at Nancy Faust, the Sox organist—she’s famous for picking songs that play on player’s names. Mike marveled at the endurance of Carlton Fisk, and we both wondered out loud why every time we went to a game, that bum Banister was pitching.
The three-hour ride home was quiet. Once there, we found ourselves sitting on our miserable couch, as we’d feared, holding hands, trying to imagine how we’d cope. Our only decision that night was to go to sleep. Our bed felt wonderful. I was home for good. Despite everything, a powerful relief came over me, a sense of security, such a change from how I’d felt during those months in my hospital bed. And I realized right away that sight isn’t needed under the covers.

Read our entire collection of love stories at Easterseals.com/love!

 

How MapQuest saved this relationship

Valentine’s Day is on the way, and to celebrate, we’re featuring a series of posts on the Easter Seals blog and stories on the website about disability and relationships. Mary Mucci is the Senior Planned Gift Officer here at Easter Seals Headquarters. Here she is with a Valentine’s Day post about a disability that’s not always obvious.

Better than Bill

by Mary R. Mucci

Kevin and I have known each other for over 35 years, but we’ve been in a “relationship” for less than five. Unlike most couples, we never fight…except for that one recurring little tiff. But after 3 or 4 incidents, we’ve found common ground and don’t even fight about that anymore.

That fight was about driving and directions. I drive all over the country for work, and I always rely on my navigation device to get me where I’m going. With only a few exceptions, I get there without incident and within the time it tells me the trip should take.

So, one day Kevin and I get in the car to go to my cousin’s. Kevin is doing the driving, so I pull out my navigation friend (Bill) and plug in the address. Kevin then proceeds to ignore Bill’s instructions and drives off in a totally different direction than Bill told him to go. I am insulted. Kevin is ignoring my friend Bill!

Kevin insists he knows we will get there and asks if I would “please turn Bill off.” I insist that whichever way Kevin thinks he knows, Bill knows better. “You would do well to listen, Kevin.”

We go back and forth on this. I can’t understand what the problem is. Why won’t Kevin listen to me and listen to Bill? I am not satisfied with Kevin’s explanation. Our back and forth goes on and on until we are both uncomfortable with the discussion. We pull back, say “I’m sorry” and eventually get to our destination. I know in my heart that this was not the best way to go. We could have made better time if Kevin wasn’t so stubborn, and if I hadn’t given in. We have this fight maybe two more times until we finally work out what the real problem is: Kevin has an auditory processing disability.

Kevin is a visual learner, in fact, he is an artist. When faced with uncertainty, he chooses a familiar visual path…in this case, he picks the road where he can use visual memory and clues to get him there. My insistence on having Bill read cues out loud caused Kevin to experience auditory overload, drawing his attention away from the road and making him anxious. This is hard for Kevin to articulate when it’s happening, and it sure was hard for me to understand at first, too.

Our Solution: MapQuest! Now, before we go anywhere that is less than familiar, Kevin checks out MapQuest. He studies the visual, and he writes down the directions. He decides beforehand whether or not he will take the suggested route or substitute a road that is more familiar. I never plug Bill in when Kevin is driving, and I have learned that if the most direct route involves a road that does not fit Kevin’s comfort level, well, then we just leave earlier and enjoy the scenery.

There are other times when I know Kevin is struggling with auditory sensory overload, but I know the cues now, and I know he’s not just being stubborn. This Valentine’s Day, I am making it a point to celebrate the artist within Kevin. I appreciate the way he looks me in the eye when we speak to each other, and how I can feel his love and trust. His issues with auditory processing give him just a little more dimension than everyone else …lots more than Bill, to be sure!