Gyms and Fitness Centers are Called to Make Exercise Accessible to All

Swimming poolI swim for exercise. My Seeing Eye dog Whitney guides me to the pool, and the only stroke I do is the crawl. One arm or another is extended in front at all times, protecting me from crashing my head into the wall at the end of each lap. Tapping the lane marker on every other stroke keeps me swimming straight.

I’ve been swimming for decades now. I like going back and forth in space by myself in water. It’s kind of calming, and swimming is good cardiac exercise. I knew strength-training was important, too, and the place I swim at offers a room full of exercise machines for members to use. Only problem? I could never figure out a way to memorize which button or lever to push to get each machine going. Without being able to see, it was difficult to know how to adjust the weights. I could have worked out with a friend, I guess, but I kind of like to work out when it fits into my schedule. I don’t want to always rely on a staff worker or a friend to help me – I like to exercise by myself.

I thought I’d solved this problem when I found an audio book that explained how to use free weights at home, but without being able to watch myself in the mirror, I couldn’t see how poor my form was, and I ended up with a rotator cuff injury.

Baseball fans know about the rotator cuff – it’s at the shoulder joint, a tender spot for pitchers. It turns out rotator cuff injuries are common in any sport requiring repeated overhead arm movements. Tennis, for example. And improper weightlifting. After a year of physical therapy, my shoulder was healed. And I haven’t lifted a weight since.

That’s why I’m excited to hear that Senators Duckworth (IL), Casey (PA), and Blumenthal (CT) have reintroduced the Exercise and Fitness for All Act. If passed, this bill will create standards for exercise equipment to make fitness facilities across America more accessible for those of us with disabilities. From a press release announcing the bill:

The Exercise and Fitness for All Act would establish new federal guidelines to help ensure people with disabilities have the same opportunity to use fitness facilities as their able-bodied peers, and it would allow small businesses to use the Disabled Access Tax Credit to help cover the purchase of accessible exercise equipment.

Senator Duckworth, one of the bill’s co-sponsors, has completed four marathons since she lost her right leg near the hip and her left leg below the knee from injuries sustained on November 12, 2004, when the UH-60 Black Hawk helicopter she was co-piloting was hit by a rocket-propelled grenade fired by Iraqi insurgents. “No one should be denied the ability to lead a healthy lifestyle because they have a disability, but many exercise gyms and fitness facilities across our country are not accessible for people with disabilities and do not comply with federal rules,” Duckworth said. “I know firsthand how frustrating this problem is. This legislation will help reduce the barriers that prevent many Americans from accessing gyms across our country.”

Under current rules issued by the U.S. Department of Justice (DOJ), fitness facilities are required to meet basic accessible design standards, such as providing sufficient space next to each type of exercise equipment so a person in a wheelchair can use it. However, many fitness facilities do not currently meet these standards. The Exercise and Fitness for All Act will help many facilities upgrade their facilities to comply with the law – and it would require the U.S. Access Board, a federal agency that promotes accessibility, to issue updated guidelines specifying the numbers of and types of accessible equipment facilities should have.

The Centers for Disease Control and Prevention (CDC) reports that the inaccessibility of many fitness facilities create barriers for those with a disability to exercise due to the lack of accessible space and equipment.

I hope this bill passes soon – I’m pumped to start lifting again!

 

Why do Uber and Lyft think they don’t have to pick up passengers with disabilities?

taxi-minivanBack in 2014 the Chicago Tribune published an op-ed piece I wrote that was titled “Should ride-sharing services adhere to the Americans with Disabilities Act?” Five years have passed, and Lyft and Uber still claim they don’t have to follow ADA guidelines.

A story in Politico last week reports that Lyft is fighting a federal class action lawsuit filed in New York’s Westchester County on the grounds that “it is not in the transportation business.”

Ahead of its public offering, Lyft acknowledged it has been involved in legal battles about its ongoing refusal to comply with the Americans with Disabilities Act. From The Politico story :

“For a company that says they want to do the right thing — they should do the right thing,” said attorney Jeremiah Lee Frei-Pearson, who is representing the plaintiffs in the New York class action lawsuit. “Not serving people with disabilities is very inconsistent with the public message that Lyft wants to send as being an inclusive and progressive company.”

Suits have been filed against Uber, too, and Uber also maintains that its drivers do not have to follow the Americans with Disabilities Act (ADA). Attorney Frei-Pearson told Politico that he and his colleagues have been reluctant to sue Uber at the same time they bring up this case against Lyft because of all the other other national litigation against Uber.

The Politico story says, “Lyft continues to bill itself as a better-behaved version of arch-rival Uber,” and Campbell Matthews, a spokesperson for Lyft, wrote in an emailed statement to Politico that “We think about accessibility broadly and know that many who were previously underserved by transit and taxis are now able to rely on Lyft for convenient and affordable rides.”

So does that mean it’s okay to refuse riders with disabilities? The ADA says “public transportation authorities may not discriminate against people with disabilities in the provision of their services,” but Uber and Lyft identify themselves as technology companies — not transportation companies. The drivers are independent, they drive their own vehicles, so Uber and Lyft feel they are not required to provide ADA-mandated vehicles and rides.

I try to avoid using ridesharing companies on principle and have only taken about a dozen rides on Uber and Lyft over the years. Only one driver refused to take me with my service dog, and that was a Lyft driver. Without the law on my side, my only recourse was to call another driver and hope they’d take me. It all makes me feel unworthy.

Whenever possible, I ride in a registered cab rather than using a ridesharing service. Cabs that are registered are part of a public transportation authority, registered cab drivers go through a lot of training to get their cab licenses, they are professional drivers, they know where they’re going, and when I call for a ride, I have the law on my side: the ADA prohibits public transit authorities from discriminating against people with disabilities in the provision of their services. And then there’s this: I tip well!

Now, that doesn’t guarantee that registered cab drivers will pick me up with my Seeing Eye dog, but it does guarantee I have recourse. When we moved to Chicago in 2003 I filed formal complaints with the City of Chicago after two separate cab drivers refused to take me with my Seeing Eye dog. Both drivers had their license revoked for a month, and both were fined. I haven’t been refused a ride from a registered cab for years. I think that’s because they know the law.

I get the utility of Uber and Lyft. Especially outside of major cities and downtowns. But, by all accounts, they cut every corner they can. So whenever possible, I’ll cut them out, too.

 

What’s Worse: Bad Disability Representation or No Representation?

Is it better to have no representation or bad representation of disability in film? For me, they are almost one-in-the-same. With bad representation, it is exhausting to educate people repeatedly that what they saw on screen does not reflect an authentic disability experience. That we still build communities and foster relationships when society tries to isolate us. And when movies like Me Before You make the case that we are better off dead, I would rather the film did not exist in the first place.

Bad representation leads to misconceptions and everyday ableism, which can eventually influence policy and human rights. It actively harms one’s psyche and sense of self-worth. To witness a caricature of yourself that is played off as a joke, or represents horror, or stands in for the audience’s worst fears – you leave the theater deflated.

But no representation is erasure and it also leads to misconceptions and ableism. Not having us on screen is like saying we don’t exist – or that we shouldn’t exist. It’s othering, it’s disturbing, and it doesn’t reflect what society looks like.

Disability in Film event May 16th at 6:30pm EST

My favorite genre of film and TV is space-based science fiction. It’s important that I see disabled people flying spaceships or living on a space station because it means ableism didn’t win and the innate diversity of humanity flourished. And it doesn’t have to be my specific disability portrayed on screen to make me feel represented and present – knowing that the script writers or the showrunners want any disability in their vision of the future gives me hope that our efforts toward 100% inclusion prevailed.

But it’s not enough that disabled people are on screen – we should be in the writer’s room, filming from behind the camera, and leading as directors or producers. The Easterseals Disability Film Challenge, a weekend-long filmmaking contest, aims to fulfill this underrepresented community. The film challenge “provides a platform for new voices in the entertainment industry…[where] winners receive invaluable access to entertainment professionals, opening the door to an industry notoriously difficult to enter.” This event features people with different disabilities taking on various roles in the filmmaking process and shows that we are more than capable of telling our own stories.

This Thursday, Easterseals Thrive is hosting a virtual meetup for disabled women to discuss disability in film and why representation matters. We’ll also watch and share our thoughts on the winning entry from the Disability Film Challenge. To join the event, please visit the official event website to RSVP. Hope to see you there!

 

The Waters of Life May Change, but a Mother’s Love is Constant

a young girl in a wheelchair laughing with her mom

Elena and her mother, Rosa.

I started taking swimming classes at the local YMCA when I was six months old, and those lessons continued throughout my childhood. When I graduated to the “big pool,” the water was much colder and I spent most of my time shivering, complaining, and wanting to get out.

So, one of my favorite childhood memories of my own mother was when she would stand at the end of the shower and hold open a fresh towel and greet me with a huge smile. I’d scamper over to her, and she would hug me with a dry soft towel and keep hugging me until I warmed up.

Thirty years later, I still remember how loved and protected I felt in my mother’s arms. As I witness my own wife, Rosa, serve as her role as mother to Elena, who is non-verbal and non ambulatory, I see similar acts of simple daily love and care for our daughter.

As I am writing this right now, my wife and my daughter are both snuggled together sleeping on the couch. It’s truly beautiful, and I hope our daughter Elena remembers loving experiences such as this for the next thirty years.

I have to be honest with you, though. It’s not always that simple. Life is seldom this peaceful. My wife spends countless hours going to medical appointments and physical therapy with Elena, ordering prescriptions, administering between three and five medications three times each day, lifting, bathing, cleaning, feeding, entertaining, and worrying. These two are currently napping on the couch, but it wasn’t that long ago they were both napping in a hospital bed.

Elena was hospitalized a little over a year ago, and Rosa was by her side for two months comforting her, attentively listening to the medical team, and simultaneously emailing colleagues in the Spanish department where she teaches so that her high school students could stay on track.

Indeed, both Elena and Rosa are impressive in their own right, and although being a parent is incredibly frustrating, exhausting and full of worry, it’s also beautiful. Our daughter is a joy to be around and I know that she feels just as loved as I did when I was wrapped up in a towel in my own mother’s arms.

So, when people ask me if we are going to do anything for mother’s day like brunch or have people over, the answer is always a “no.” To show our love on Mother’s Day, Elena and I will leave mommy alone in the hopes that she can nap, read a book, or just enjoy peace and quiet. Regardless of how Rosa spends her mother’s day, Elena and I want her to know how thankful we both are that she is in our lives.

 

I’m Giving Out Four Times the Love this Mother’s Day

Remember the 9-year-old who wrote a post here for Valentine’s Day years ago about how much she loves her Dad? DJ Mermaid (her pen name) is a seventh-grader and goes by her real name now. Here she is with a guest post for Mother’s Day.

by Anja Hermann

DJ Mermaid and her mom

Anja and her mom

My name is Anja Korovesis Herrman. I am a 7th grader with a physical disability. I am 12 years old. My hobbies/ obsessions include: Advocating for people with disabilities, reading 24/7 and playing The Sims 4. My favorite books include Victor Hugo’s Les Misérables, Harper Lee’s “To Kill A Mockingbird” and E.B White’s” Charlotte’s Web” and “The Trumpet of the Swan”. I also enjoy planning my 2044 Presidential Campaign (Vote Anja!), knitting, swimming and horseback riding. In addition to the other activities, I rock climb and am a new member of disability rights group ADAPT. This Mother’s Day, I would like to give a shoutout to my mother times four: My aunt, my nama, my mom and my grandma. All of these women are great people who lift up and support me.

Mom is my disability warrior and partner in crime. How the heck would I survive school without you? I probably wouldn’t. I love you and am immensely proud to be your daughter. I would like to refer to you as Deana X for all the amazing civil rights work you do.

Nama, you are my cooking companion and I get most of my music tastes from you. The drive to horseback riding would be so BORING without some Carole King. I hope I’ll someday be able to make as good biscotti as you and carry on the Greco tradition. I just ask that you write the recipe down and don’t pull a Grandma G (i.e“forget” an ingredient just to make it different each time).

Auntie, fellow panda lover, Sound of Music buff and connoisseur of comfy beds, you are my SuperAunt (trademark pending). I go to you when I want to watch old 80’s classics. To this day, the time I was in 2nd grade and was 7 and ill, and you brought over Adventures in Babysitting? It goes down as one of the best sick days in history. You are not a mom, but I hope you will be soon!

Grandma, you taught me about tea parties and the awesomeness that is not just using an electric mixer: it’s kneading with friends. Within your list of secrets, please let me know how you frost your cookies so prettily. Do you have a formula you are not letting me in on?

Happy Mother’s Day to you all!

 

My Dedication To a Mom Who Has Touched 10,000 Lives

I am delighted to have guest blogger Steve Ferkau here today with the first of many Mother’s Day posts we’ll be publishing this week. Once on the verge of death from cystic fibrosis, Steve is now a double lung and kidney transplant survivor.

by Steve Ferkau

For nearly 60 years now, my Mom has been one of my biggest supporters and cheerleaders. She’s watched me keep the upper-hand on cystic fibrosis, then watched cystic fibrosis slowly gain the upper-hand on me — then she rejoiced when a beautiful person and family gave me two new lungs.

She always loved pinning people with “Donate Life” lapel pins, and she was never satisfied with just giving them a pin — she’d tell them a story. She’d describe her son struggling — and she’d tell them about a beautiful girl from Iowa who saved his life. I am that son, and if I was anywhere near her when she WAS telling this story, she’d pull me over and introduce me.

She always wanted to write that beautiful girl’s Mom a letter, but she’d cry anytime she thought about it. That Mom lost a precious and beautiful daughter, but because of her and them, my mom didn’t lose her son.

Over the years my mother has probably touched over 10,000 lives with her story. I know that the Illinois Organ Procurement Organization Gift of Hope had given her over 10,000 pins — and they’re all gone.

Mom is 87 years old now. She’s wading through dementia and doesn’t quite remember my new lungs or the struggles she helped me get through during the first half of my life. I’ve had that beautiful Iowa girl’s lungs for 19 years. Mom knows me and my siblings 95% of the time, and of course I am the self-declared favorite child.

Mom had long been known for folding copies of Robert Test’s poem “To Remember Me” and including it in cards and letters. Here’s an excerpt:

Excerpt of To Remember Me by Robert Test

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my “deathbed.” Call it my “bed of life,” and let my body be taken from it to help others lead fuller lives…If you must bury something, let it be my faults, my weaknesses, and all my prejudice against my fellow man.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

I know a beautiful girl from Iowa who will live forever. And I know a couple of Moms (and Dads) from Illinois and Iowa who will live forever in my heart. Happy Mother’s day to all.

 

Why I Am Celebrating Mother’s Day Early This Year

Gus and Beth.

Gus and Beth

For years after our son Gus was born, I begged my husband Mike not to get me a gift for Mother’s Day. “I’m not your mother!” I told him.

Our son Gus has severe mental and physical disabilities — he doesn’t understand what Mother’s Day is. Gus wouldn’t be making me a card. He wouldn’t be presenting me with dandelions picked especially for me. I knew that. But I was determined not to let any of that bother me. I knew I was a good mother, and I knew my son loved me in his own special way.

And then one year (Gus must have been five or six), I burst into tears on Mother’s Day. “I’ll never get to celebrate like all the other mothers do!” I wailed. Poor Mike didn’t know what to do.

This article in Psych Central wishing a happy Mother’s Day to special moms reassured me that I am not alone when it comes to feeling a bit of sadness on Mother’s Day. The article acknowledges that while parents raising a disabled or chronically ill child may have melancholy moments, they are often followed by a renewed commitment “that comes from love and hope and determination.”

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day. This year we’re even starting a week early. Tomorrow we’re heading to Wisconsin to spend the day with our grown son in his group home.

We’re proud of Gus. I’m proud to be his mom and happy to celebrate as a family. After we kiss Gus goodbye, Gus’ dad and I plan on spending Saturday night in a nice hotel. So yes, we’re celebrating Mother’s Day this year, and we’re starting early. On May 5, a week before official Mother’s Day, I’ll be ordering room service. After all, breakfast in bed is a Mother’s Day tradition!

 

America Lights Up Orange for the 100th Anniversary of Easterseals

We were thrilled see major landmarks nationwide light up orange in honor of our 100th anniversary.  Over 40 locations participated. Here are the highlights!

Empire State Building – New York

 

Niagara Falls

 

LAX Pylons – Los Angeles

 

Chicago skyline

 

Hibernia Tower – New Orleans

 

Rock and Roll Hall of Fame – Cleveland

 

See more about the 100th anniversary of Easterseals by visiting http://www.easterseals.com/100

 

A Message from Our President and CEO on the 100th Anniversary of Easterseals

CEO Angela Williams in front of a word wallWhile Easterseals now serves 1.5 million people in 70 affiliates across the country, our story started as the vision of one grieving father in Elyria, Ohio. After losing his son in a tragic accident, our founder, Edgar Allen, was determined to make a difference for children just like his son, so he set out to do everything he could to change the course of history for generations to come.

As we celebrate 100 years of service at Easterseals, we’re more energized than ever to carry our mission into the next century; but we would be remiss to not reflect on our past and consider how those beginnings made us the organization we are today.

For the 100th Anniversary of Easterseals, I’d like to share with you some lessons I’ve learned from Edgar Allen’s legacy that I try to live by as the current leader of Easterseals National.

  1. Don’t be afraid to dream big. When Edgar Allen realized the lack of adequate medical services available to save his son, he sold his business to begin a fundraising campaign to build a hospital in his hometown. Anyone can make a difference, and no vision is too grand or too bold to accomplish.
  2. Don’t be afraid to evolve and innovate. Once the Elyria Memorial Hospital was up and running, Edgar Allen realized just how hidden from view children with disabilities were. He refused to sit by while children in his community faced barriers to full lives, so he created the National Society for Crippled Children, which eventually became Easterseals.
  3. Be resourceful. In the mid-1930s Easterseals needed to find a way to raise funds for services during the Great Depression. Determined to meet the needs of those they served, the organization embarked on an annual sale of small decorative stamps around Easter time as a way to represent rebirth, new growth and renewed life. Not only did the seals raise money, but they also raised awareness. This campaign led to our current name of Easterseals and paved the way for the organization we are today.

These are among many lessons from our history that we can apply each and every day to ensure a vibrant future where everyone – regardless of age or ability – is 100% included and 100% empowered.

Thank you for your support every step of the way. Cheers to 100 more years of service!

 

Who Founded Easterseals? The Story of Edgar Allen Pt. 1

The dramatic increase in polio cases during the early 20th century caused the disease to be regarded as an epidemic. Thousands of children and adults became paralyzed by polio, and Easterseals founder Edgar Allen raised funds and built a hospital where children with polio could be fitted with crutches and leg braces. Many children remained at that hospital afterwards to attend school there, but what event motivated this successful businessman to sell his businesses and devote himself to providing help for people with disabilities?

Edgar Allen was born in Newton, Mass. and moved to Cleveland, Ohio in 1876, when he was still a child. He made his fortune by supplying telephone poles to American Telephone and Telegraph (AT&T) and railroad ties for the growing railroad industry.

On Memorial Day, 1907, one of Allen’s two sons — an 18-year-old named Homer — was killed in a streetcar accident. The family was living in Elyria, Ohio (a town with only one makeshift hospital) and Allen couldn’t help but think that if emergency medical care had been available his son’s life
could have been saved. The tragedy inspired Allen to sell his business and devote himself to raising funds for a hospital.

Elyria Memorial Hospital opened in 1908, and it was there that Edgar Allen met met 8-year-old orphan, Jimmy Bodak, who was brought to the hospital in an effort to help straighten his legs. The rest is history — stay tuned for part two to find out what happened after that.

Learn more about the 100th Anniversary of Easterseals!