When not being independent is good

by Beth Finke

I gave a presentation to senior citizens at the Skokie Public Library’s Talking Books Club, and a lot of the conversation afterwards centered on independence. We shared tips for keeping track of our prescriptions, identifying colors of clothing, and using talking computers to read and write.

A woman there who has macular degeneration piped up and said she loves to cook, but when her daughter offered to buy her a bag of frozen, chopped onions at the grocery store, she agreed to finally give in and quit insisting on dicing them herself. “I’m learning to stop being so goddamned independent and accept help,” she said. “But it hasn’t been easy.”

Her words were refreshing, and she didn’t have to be able to see to know we were all nodding in support. Our hour at the library went by quickly, and once I’d thanked the Talking Books Club for having us, a dapper 80-year-old man named Jim guided Whitney and me to his car to take us home.

I’ve known Jim for years now – his wife is in one of the memoir-writing classes I lead here in Chicago. He drives Whitney and me to that class every Thursday, and when he found out I’d be speaking to a Talking Books club, he volunteered to drive Whitney and me to the library for our presentation, too.

Jim has the wisdom of age and the spirit of youth. During our rides to the memoir class every week I’ve had the privilege of hearing his stories about growing up in a small town in Illinois, the mother who gave him his first violin, and getting free room and board in exchange for working as a houseboy for John Kenneth Galbraith’s family at Harvard. “They said they named their son Jamie after me,” he says shyly. “But I’m not sure that’s true.”

Jim is not exactly forthcoming, but when I ask questions, he answers. In our 20-minute rides to class he’s shared the agony and ecstasy of raising children, his appreciation for his talented grandchildren, his work writing the Illinois Power of Attorney Act and then getting it through the state legislature during his career as partner in the Chicago firm of Chapman and Cutler, and his current role as president of the board of the Chicago School of Violin Making.

The Chicago School of Violin is one of only a handful of such schools in the world, and it happens to be located very close to the Skokie Public Library. “Would you like to stop at the school along the way for a tour?” I would. We did. It was amazing.

On my rides to memoir-writing class with Jim, I often remind him that he doesn’t have to come each and every week. Whitney and I are capable of taking a bus. He pretends he doesn’t hear, and you know what? That’s okay with me. Just like my new friend in the Talking Books Club, I’m learning to stop being so darn independent.

Being a mom with a disability

by Beth Finke

Linda Long and her son when he was a toddler (he’s now 10)

I am pleased to introduce Linda M. Long-Bellil, Ph.D., J.D. as a guest blogger today. Linda is an Assistant Professor at UMass Medical School/Center for Health Policy & Research. Linda  and her husband happen to be parents with disabilities who are raising a typically developing child. Linda shares her experience and advice for other women with disabilities who want to become moms, too.

Ten years of being a mom

by Linda M. Long-Bellil, Ph.D., J.D.

This year, my son, Ben, turned 10, which for me meant 10 years of being a mom. I recently rediscovered an article that I wrote when our Ben was only 6 months old. It’s quite something to look back and see how far we’ve come – my husband, Ben and I.

I remember the sense of wonder (combined with exhaustion) I felt when he was born. And how it took awhile for it to really sink in that I was a mother. Now it seems like second nature and I barely remember when I wasn’t a mom.

I remember the challenges we faced when he was little, figuring out the logistics of caring for a baby when we both have physical disabilities (I have spina bifida and my husband had polio). Luckily, a lifetime of disability has its benefits – it teaches you to be resourceful and to adapt. And so, my husband and I were able to figure things out. We have also been lucky to have lots of family support. Thank goodness for Grandma!

The days of nighttime feedings and wet diapers are long gone, replaced with new challenges. How much time to let him spend on his iPad? How can we get him interested in reading a book?

Sometimes we need to do things a little differently to connect with him. For example, we can’t really ride bikes with Ben, but my husband works on the bike with him. Instead of running around the yard together, they wrestle, which keeps them close.

I love to watch Ben play with his friends. The joy I see on his face and his happy laugh make me smile all over. There is nothing more fun than watching your child have fun.

Having a child connects me to other people in ways that I never anticipated. I now have a topic of conversation with people with whom I might otherwise have none. At work, I probably have at least one conversation a day with another parent about our kids. One Mom and I bonded over the fact that a conference out of town forced us both to miss Halloween.

Being a Mom has opened up a whole new world for me. I only hope that other women with disabilities who want children have the opportunity to experience the sense of wonder and feeling of belonging that motherhood has brought me.

The Supreme Court Hands Down a Major Victory for People with Disabilities

by Randall Rutta, President and CEO

The U. S. Supreme Court’s historic ruling upholding affordable care subsidies is an enormous win for people with disabilities.

Had the plaintiffs in King v. Burwell prevailed, as many as 6.4 million Americans would have been in danger of losing the federal tax credits they need to pay insurance premiums under the Patient Protection and Affordable Care Act (ACA). Of vital importance is the fact that of those eligible for assistance — individuals and families with incomes between 100 and 400 percent of the federal poverty level – many are people living with disabilities.

According to a 2014 Senate report, over 28 percent of non-institutionalized adults aged 21-64 with a disability in the United States live in poverty compared to 12.4 percent of those without a disability, more than any other demographic measured. The report also found that American households with an adult member with a disability earn 38.4 percent less than households without an adult with a disability.

But these figures only hint at the importance of the tax credits to those with disabilities who need them. In our Easter Seals communities, where we serve individuals with disabilities and the families that care for them, we see daily the difference affordable healthcare makes. For many, access to medical services and products, including rehabilitative and occupational therapies, is the only way they can hope to achieve and maintain independence and employment.

The welfare of so many depends on the survival of the ACA, and this latest legal challenge was a true cliffhanger, turning on the court’s interpretation of a few words of statutory language.

In King, the petitioners argued that the Act only allows tax credits for healthcare plans bought in a market, or exchange, set up and run by a state. The problem is that when a state declines to set up an exchange, the law requires the federal government to step in and operate a federal exchange in that state. The petitioners argued that the language of the law precluded tax credits in these states. The court viewed the ambiguous language in the context of the whole Act and, in a 6-3 ruling, found that the federal tax credits applied to both state and federal exchanges.

The majority opinion noted that “state and federal exchanges would differ in a fundamental way if tax credits were available only on state exchanges—one type of exchange would help make insurance more affordable by providing billions of dollars to the states’ citizens; the other type of exchange would not.” The Court further found that such a distinction “would destabilize the individual insurance market in any state with a federal exchange, and likely create the very ‘death spirals’ that Congress designed the Act to avoid.”

The Supreme Court may have been speaking to the specific legal issue in King, but the words of the justices have particular and powerful resonance for those living with disabilities. Access to affordable healthcare is integral to lives filled with promise and potential. Ensuring that those who need it, wherever they live, have access to federal subsidies is the fundamental essence of the law. Put another way, every challenge to the ACA is a challenge to the health, functionality and independence of those with disabilities. Let’s hope King marks an end to it.

Visit easterseals.com/advocacy to stay on top of breaking news from Capitol Hill and to find ways to have your voice heard in Washington D.C.

Disability fraud is such a problem, Florida passed a new law

by Beth Finke

Starting one week from today, Floridians who misrepresent themselves in order to use a service dog could face criminal charges. Newly created F.S. 413.08(9) was passed in response to a growing number of fake service dogs in Florida, and starting on July 1, 2015, a person “who knowingly and willfully misrepresents herself or himself, through conduct or verbal or written notice, as using a service animal and being qualified to use a service animal or as a trainer of a service animal commits a misdemeanor of the second degree.”

Violators must perform 30 hours of community service for an organization that serves individuals with disabilities, or for another entity or organization chosen by the sentencing court. Community service must be completed within six months of sentencing.

I know any regulatory line can look arbitrary, and some people may think this new law in Florida is too harsh. But just think about it. Faking a disability to bring a dog to a place of business really can cause harm to people with disabilities. We understand that people want to bring their beloved dogs with them everywhere they go, just like people with disabilities who use service dogs do. The difference here is that those of us who have disabilities and use service dogs need to have them along to do tasks we are incapable of doing ourselves.

Service dogs are highly trained to learn to complete these tasks without drawing attention to themselves or their human companions — my Seeing Eye dog Whitney had two years of training before being placed with me. It’s not hard to tie a vest on a dog, and it’s pretty easy to get fake certification for a dog as well, but it’s not easy to live with a significant disability.

Faking that you have a disability is an insult to everyone who really needs a service dog, as well as to the airlines, hotels, restaurants and stores who try to do what’s right — the new Florida law also allows businesses to remove a service animal that isn’t under the handler’s control, isn’t housebroken or is a serious threat to others.

I applaud this new law — let’s hope it helps deter people from scamming the service dog system.

Help advocate for laws that protect people with disabilities at easterseals.com/advocacy, and also learn more about legislative landmarks here.

Special dads with special sons

by Beth Finke

David Royko’s poignant Father’s Day post made me think of another loving father I know. Here’s my husband Mike Knezovich with a guest post, an honest and thoughtful tribute to special dads.

by Mike Knezovich

I was walking to a sandwich shop here in Chicago and was stopped in my tracks by the sight of a boy in a wheelchair and a man, presumably his dad, collecting themselves on the sidewalk. They had clearly just unloaded from the car parked nearby, and were readying for a walk.

It wasn’t the kind of wheelchair designed to be propelled by its user. It was, instead, focused on holding the boy—who clearly had substantial physical disabilities—in proper posture, with a headrest, and footrests arranged for that purpose, and with high handles to make it easy for someone else — in this case his dad — to push. Seeing it was a flashback to my own rituals of outings with our son Gus.

A visit with our son Gus at his group home.

The father made a last round of adjustments to the boy’s ball cap, to his seatbelt, and then gathered himself to push his son on a walk.

For a moment, I wanted to walk up to him to say something like, well, I didn’t know what. That it’ll be all right? What the hell did I know about whether it would be all right? And as a frog the size of Alaska grew in my throat, I thought better of saying anything to him just then, because, well, a stranger walking up and breaking into tears might not lift up his day.

By the time I left the shop with my sandwiches, and I was more composed, the man and his son were long gone. For a tiny split-second I wished I’d gone ahead earlier and told him everything was going to be alright. But in the next split-second I realized, again, that I couldn’t, honestly.

Beth and I are better than alright. But it isn’t the all right either of us had in mind. And it was harder than hell to get to our version of all right. That’s what the father and his son on the Chicago street face. Even if they have great friends and family and resources, it’s going to be really hard.

And if I ever see that man and his son again, this time I know what I’ll say to him. I’ll tell him he’s not alone.

Fatherhood with autism in the mix

by Jackie Orihill

It’s my pleasure to introduce David Royko, PsyD, as a guest blogger to talk about fatherhood and his 22-year-old son Ben, who has Autism Spectrum Disorder. Visit David’s personal blog to learn more about his family and books, including The Chronicles of Ben: Adventures in Autism as well as Royko in Love.

Babies Ben (left) and Jake

Fact 1: Nothing changes a guy’s life like fatherhood.

Fact 2: Nothing changes fatherhood like autism.

To be clear from the outset, when I refer to autism, I mean the classic, severe disorder that negatively and profoundly impacts the person for their entire lifespan. That is our son Ben’s reality. I am not referring, necessarily, to higher-functioning individuals who live with, for example, Asperger’s. Many, unlike Ben, can speak eloquently – or otherwise communicate – about autism and what it is for them, often not seen as a disorder at all, but a difference. I am writing only about what it has meant for Ben and for us.

Rocking newborn Ben or his twin Jake as they fussed at 3:00am, almost 22 years ago, I was sleepless, sweaty (it was a hot summer), exhausted, and getting to know the local cop’s overnight schedule patrolling the neighborhood.

Late night feedings are just one of countless little and big parental tasks and challenges – arduous, annoying, mundane, stressful, surprising, and required. They’re ploughed through with eyes (and ears and nostrils) focused beyond. A potentially wonderful, or at least decent and reasonably happy future awaits, we hope — for them and, unconsciously at least, for us too, Mom and Dad, with dreams for them and joy from sharing them for the rest of our lives.

One of those long nights, a favorite symphony of mine came on the radio as I held Ben, and in my drowsy, half-dreamy state, I pictured him growing into a conductor, the top spot in the classical music world, except for being a composer. So I envisioned him as the composer and the conductor. Then I imagined him simply getting to know and love this symphony, of my sharing this with him, discussing it with him, attending concerts with him.

OK, time for some of those changes.

Forget about Ben being a conductor. Or composer.

Forget about Ben talking about music beyond a word or two.

And forget about sitting with Ben in Orchestra Hall with the Mahler 3rd blazing.

But there’s good stuff.

Jake and Ben, December 2013 (photo credit: David Royko)

Ben is a musically perceptive guy, and he has strong preferences and loves. Even buried under his autism, with only little geysers of musical awareness bubbling up, we know for example, based on requests, he likes horns and brass, mandolins, violins, Schubert piano music, and Rafi (oh well). Overall, the guy has fine taste.

Our listening is done in the car, where he reads the stereo panel’s display to see what’s being played. Sometimes it’s clear, but he often comes up with his own “interpretations” of what he reads.

Like “Freight Train.” We figured out this means Nickel Creek’s bootleg Freight and Salvage disc, because the display’s limited length only gets as far as “Freight and Sa”.

Then there’s “Monkey’s Music,” which was Thelonious Monk’s “Monk’s Music.” It wasn’t obvious since Ben also loves monkeys, but it does suggest how strongly he feels about one of  Monk’s greatest albums.

And when he spontaneously belts out a chorus of something-or-other at the top of his lungs while loping through Target, it’s always in tune.

So Ben’s definitely musical. And I am deeply thankful for that.

The parental task and challenge for me – arduous, and required, maybe especially on Fathers Day, is to avoid thinking about what his musicality would mean without the shackles of autism.

But if I have a philosophy of life, it’s that life is a re-frame. If the glass is half-empty, find a different glass.

Ben’s aptitude for appreciating and loving music will never put him on a podium in front of an orchestra or behind a drum set driving a band (like his dad’s younger days). Or even sitting at a gig, listening.

Those are “what if”s.

What IS, for Ben, is the pure joy he gets from music. The grin that appears when a favorite tune begins on the stereo, or a request for a certain disc is fulfilled, or a favorite ditty is sung to him, or a favorite ditty is sung BY him in McDonald’s at fortissimo…

There has never been a composer, conductor, drummer or songbird who loves music more than Ben.

That makes my own heart sing. And even without the card, there is no better gift on Fathers Day.

Why you should eat this s’mores ice cream

by Beth Finke

At long last, a chance to enjoy ice cream without feeling guilty! This week Friendly’s Ice Cream introduced a new limited edition ice cream, and if you buy a 48-ounce carton to give it a try, Friendly’s will donate a portion of the proceeds to Easter Seals.

Friendly’s new S’mores flavor features toasted marshmallow ice cream with dark chocolate flakes and a graham cracker swirl. Y-U-M. They’re producing 9,500 cases of the s’mores ice cream flavor and will donate $1 from every case to Easter Seals. Based on the projected sales figures of this limited edition flavor, Friendly’s estimates that they will be donating $10,000 to Easter Seals.

For the past 34 years, Friendly’s has supported Easter Seals with its in-restaurant “Cones for Kids” campaign, but this new limited edition ice cream flavor is the first time Friendly’s has created a retail product that gives proceeds to Easter Seals.

So go ahead and enjoy some ice cream – it’ll make you feel good, and it’s good for us, too!

What happened to my guide dog after he saved my life?

by Beth Finke

Service dog who saved a life

A guide dog who saved his blind companion from getting hit by a mini-bus has been getting a lot of attention in the media. And well he should! A story in last Tuesday’s USA Today reports that the driver of a school bus in Brewster, N.Y., told police he didn’t see Audrey Stone and her guide dog Figo crossing the road as they made their way home. After the accident, Audrey was rushed by ambulance to a hospital while the Brewster Fire Department rushed her heroic guide dog to a vet. Both were hurt, but sources say both are recovering well:

Stone, 62, suffered a fractured right elbow, three broken ribs, a fractured ankle and a cut to her head in the accident, said Brewster Police Chief John Del Gardo. Figo’s leg was cut down to the bone, said Paul Schwartz, who manages the Extra Mart gas station at the intersection and ran to the scene.

The lead to the story in USA Today claimed that Golden Retriever Figo’s “protective instincts kicked in” to save his human companion, and while that may be true, it’s only a part of it.

Guide dog schools spend months teaching dogs to pull their blind companions back should oncoming vehicles come too close, and when we humans arrive at the schools to train with our new dogs, we practice over and over and over how to react to the dogs and move backwards with them, away from harm, should something like that happen.

Harper is very happy in his well-earned retirement, living with friends in a quiet suburb and hanging out with a neighbor — a Collie named Beau.

I have received all four of my dogs from the Seeing Eye school. With each one I’ve stayed there in Morristown, N.J., three weeks to learn how to work with that new dog before flying back home to Chicago. After the first week of training, Seeing Eye staff start heading out in vehicles to intentionally cut in front of us, simulating the very real behavior of drivers like that bus driver in New York.

All four of my dogs routinely refused to step into the street if they saw a vehicle barreling toward us, and if a car cut in front of us in the intersection, these dogs knew to pull me back from harm’s way. Otherwise they would never have been placed with a blind person as a Seeing Eye dog. All four of my dogs have saved us from multiple near misses, but the near-miss I had with my third dog Harper was too close for comfort.

Harper and I were at a busy Chicago intersection in 2012, and hearing cars going straight at our parallel, I commanded, “Harper, forward!” We’d taken a few steps into the intersection when a woman in a van turned the corner right in front of us.

Harper pulled us back with such force that I fell backward, cracking the back of my head on the concrete. The woman driving the van said later that she hadn’t seen us crossing the intersection. Harper saved our lives.

My husband Mike inspected the harness later and discovered it was bent. I Suspect Harper was clipped by the car. Seeing Eye instructors told me that after a near-miss like this, guide dogs tend to do one of three things:

1. Brush it off as to say, Hey, we almost got hit!” and just keep working
2. Need a little retraining before they get their confidence back
3. Never feel confident again and have to retire

Harper started showing fear around traffic after the near-miss. Three Seeing Eye trainers came one after another to help retrain him, but nothing worked. Harper trembled around traffic, his head down, his tail between his legs. City life had become too much for him.

The Seeing Eye staff members who’d come to visit us met in Morristown afterward to discuss Harper’s future. Could they bring him back to the Seeing Eye for retraining? Place him with some other blind person, one who lived in a calmer environment?

The head of training phoned me after their meeting. Harper would not be retrained, he said. I could go ahead and find friends to adopt him. I was crushed. So much time, energy and money had gone into training Harper. I’d hoped he could be placed with someone else so that all that effort wouldn’t have to go to waste.

Hearing the disappointment in my voice, the trainer on the other end of the phone assured me that the Seeing Eye’s hard work — and Harper’s training — had not been wasted at all. “Harper took a bullet for you,” he said. “And for that, he’s earned an early retirement.”

100 veterans and counting!

by Randall Rutta, President and CEO

Easter Seals President and CEO Randall Rutta (2nd from the right) at the Padres game (Photo credit: Sandy Huffaker)

Earlier this week I returned from a trip to Southern California, where I had the privilege to connect with Delores and Bob Hope’s granddaughter Miranda Hope and join her in celebrating the 100th veteran to obtain employment through Easter Seals.

Less than two years ago, the Bob and Delores Hope Foundation invested in Easter Seals’ efforts to support veterans with securing employment, creating the Easter Seals Bob Hope Veterans Support Program. In partnership with Easter Seals Dixon Center for Military and Veterans Services, Easter Seals Southern California has in that time helped 100 veterans to secure jobs and supported nearly twice that number with job-readiness, transition to education, and relocation.

This exciting program milestone was celebrated by CVS Health and Easter Seals last Monday, where Mike Brotherton pitched the first ball in a Padres-Mets game. While he successfully threw a fast, straight pitch directly into the catcher’s mitt, things didn’t go as well for the Padres.

Five hundred CVS Health associates attended the game, raising $5,000 for Easter Seals’ veterans employment services. Regional CVS Health executives Hank Casillas and Doug Palmieri joined Easter Seals Southern California CEO Mark Whitley, Veteran Program Director John Funk, Miranda Hope, and me on the field for the check presentation and a shout out to Easter Seals for our work with veterans and their families.

It was a proud night for our CVS Health partners, the Hope Family and Easter Seals, and you can find out more from the local NBC story about Mike and Easter Seals veterans employment program.

My thanks to all of you Easter Seals blog followers for your enthusiasm for Easter Seals’ support of the military and veterans communities. We are truly making a difference for the men and women that have so bravely and selflessly served our nation.

Accessible beaches around the world

by Beth Finke

Summer’s here, and for lots of us, that means fun at the beach. But what if you — or the people you travel with — use a wheelchair? Easter Seals is featuring information on accessible beaches in the United States, but I thought I’d share a great post that mentions cities around the world that have great beaches.

It’s a post from a wheelchair travel blog called CurbFree with Cory Lee, in which he suggested ten with, he thinks, have the most accessible beaches in the world:

1. Pattaya Beach Resort, Thailand
2. Virginia Beach, Virginia
3. Rehab Point in Oxnard, California
4. Sirens Resort, Loutraki, Greece
5. Freedom Shores, Isla Aguada, Mexico
6. Hanauma Bay, Hawaii
7. Cancun, Mexico
8. Key Largo, Florida
9. Manly Beach, Australia
10. Tuscany, Italy

The CurbFree with Cory Lee post links to each beach he chose, and the post goes into detail about why they made his Top Ten list. Cory is one tour guide you can trust on such things — he’s a travel expert who uses a wheelchair himself.

Cory concedes that while he thinks the ten beaches and resorts on his list are the best, they are by no means the only accessible beaches in the world. “The only way to find the others is for you to continue traveling,” he says. “You never know what undiscovered gem you might find waiting for you in a small corner of the world.”

Check out our list of accessible beaches in the United States.