Is Disability Finally Having its Moment?

Randy Rutta

Easterseals CEO Randy Rutta

The pulse and pace of disability is being featured more prominently in the public discourse, and more than ever before. Could this be the moment people in the disability community have fought for?

Last year, you’d be pressed to find an accurate portrayal of children and adults with a disability in scripted television. Today, the sitcom Speechless, about a “new” kind of family and starring an actor who really has a disability, is one of the most promising shows in the Fall TV lineup. And A&E’s Born This Way, that chronicles the lives of young adults with Down syndrome, received the Emmy for best unscripted reality television series. Read more on my Huffington Post blog.

 

Teaching children with disabilities about politics

All the buzz about last night’s presidential debate makes today the perfect day to publish a guest post about an article in disability thinking that encourages parents to talk with their children who have disabilities about politics. That article got a lot of attention over the summer, and I asked guest blogger Chris Hermann to write a post with his impressions. Chris and his wife have two children, and the family bonds together every Sunday morning in front of the TV to watch shows about, you guessed it…politics.

That’s Chris Hermann with his ten-year-old daughter.

That’s Chris Hermann and his ten-year-old daughter.

by Chris Hermann

I completely agree with that story in Disability Thinking. The author was spot on about both the importance of introducing our children to politics and the benefits of activism.

Introducing our children to politics and our legislative system gives them an idea of how this country runs and provides an avenue for open and honest discussions about what is happening in the world. Rather than just telling our seven-year-old son and ten-year-old daughter how to interpret news of the day or quoting the candidates, we have real discussions with our children and learn what they feel about things they’ve seen and heard. Different perspectives are brought to light by our children, and as parents, we know that teaching them to back up their statements with facts rather than just opinions will benefit them in many ways later in life.

It is especially important to include our daughter, who has cerebral palsy, in our conversations. Nearly 1 in 5 people in the United States has a disability, yet you’d never know that from what the politicians say. The focus of politicians when discussing disability is often limited to linking it to healthcare. This does a disservice to everyone. The world of disabilities is large and diverse, and the disability community isn’t as organized and unified as, say, the women’s movement or the LGBTQ community is. Yet, if you include people with disabilities, those who care for them, those who live with them, it could be an enormous voting block to get some effective change.

If we speak with our children about politics there is a chance they will be active citizens in democracy – at all levels. This means the children with disabilities may grow up to be activists with disabilities, furthering a political discourse that includes them and doesn’t just talk about them. Or at them.

Even if children with disabilities don’t grow up to be activists, talking with them about politics now will make it more likely that they understand their government, their own rights and how to exercise them. They can put all this knowledge into practice as early as elementary school as they learn how to navigate teachers, school policies and the education system — all while making friends on the playground.

In our home, we make it a point to watch and listen to political figures we don’t always agree with as well. It is important to understand where other people are coming from with their opinions and viewpoints. We also do this to try to see where compromises can be made. We want our children to understand it is unrealistic to expect a party to unilaterally do everything it wants. Compromise is important, and if the two parties cannot agree on anything, nothing gets done. (Illinois budget crisis anyone?) This really is a life skill, isn’t it? How often do you get to do exactly what you want to do?

We have yet to see a person with a physical disability on one of the Sunday morning political talk shows. That doesn’t mean it hasn’t happened — just that we haven’t seen it. And in our family, the absence or infrequency of this demographic is a discussion topic itself. Why aren’t there more people with disabilities on these shows? Why aren’t the hosts asking people with disabilities how the election will affect them and their needs? Why is it that so few people with disabilities become policy wonks and come up with the policies that affect them?

The passage of the Americans with Disabilities Act (ADA) didn’t just magically end discrimination towards people with disabilities, and it didn’t suddenly make the world physically accessible to all. If the legacy of the ADA is to continue and to be effective, we have to educate our children about activism and politics.

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4 simple ways to promote inclusion at work for people with disabilities

Bridget Hayman

Bridget Hayman

I spent some time recently thinking about my experience in the workforce as a person with a disability… first as an intern, then a communications professional, and now as a manager who employs others with disabilities.

I’m reminded by the latest employment headlines that all too often the biggest employment barrier for people like me (I have Cerebral Palsy and use a wheelchair) is stigma, and that today the unemployment rate for people with disabilities is two times higher than that of people without disabilities.

With a growing disability population and evolving business models, the need for inclusive workplaces has never been greater.  Inclusion is a win for everyone — giving people with disabilities the opportunity to work and rewarding employers with dedicated and talented staff.

Throughout my 15-year career, I’ve worked to break down barriers by bringing my best to each job I take on, and I know first hand how employees with disabilities add value by offering a new, vital perspective that leads to better products and processes. To put it bluntly, hiring people with disabilities is not just the right thing to do, it’s a smart investment.

That said, true inclusion can sometimes seem daunting to employers, and it might be hard to know where to begin.

With that in mind, I’ve gathered four relatively simple ideas to consider during the hiring process and throughout employment, based on my experience, to help employers get and keep the diverse talent they need.

Be transparent. Don’t assume, ask. You shouldn’t hesitate to involve people with disabilities in your planning process.  I’ve been floored to discover how much work and time has gone into accessibility planning for conferences, outings, and even my own work space before I’ve been consulted… if I’ve been consulted at all.  I feel bad when I have to recommend last-minute changes that would have been easy fixes had I known about them from the start.  The best working relationships I’ve had have been based on open communication with me clearly stating my needs and my superiors sharing their plans.

Think beyond the desk. It’s best to avoid thinking in terms of special access, or solely ADA compliance, and start thinking in terms of universal access.  Think about what a job entails.  Will an employee need universal access throughout the building? To common areas like the lunchroom? Will they be traveling for work? How will they get to and from the office? Discussing how they go about doing their job, and the access supports they need, leads to better results and a better work environment for everyone.

Remember, barrier-free is better for everyone. At one of my jobs, an accessible button was installed to open the door to my department.  It certainly made it easier for me to move freely through the office, but apparently it was removed when I left.  That led to several employee complaints because that department door is also the entrance to the mail room.  It was next to impossible to open the door when pushing the mail cart without a button.  I hear that door button has been re-installed. Remember, universal access benefits everyone, not just employees with disabilities.

 Evaluate your emergency evacuation process. Most people don’t know what the emergency evacuation plan is in their office building for people who need physical assistance to get downstairs.  Find out, and consult with all staff about their comfort level.  When the process was reviewed at one of my jobs, my fellow employees decided it was inadequate even though it met the fire code because it involved leaving me alone in a stairwell.  They revamped the entire process,  and then we practiced it… often.  These practice sessions took place beyond my department on every floor, so that all employees were well-versed in helping… not just me… but anyone needing assistance due to disability, physical limitations or temporary injury.

I hope you find these tips helpful. Do you have any to share? Leave us a comment. We’d love to hear from you. And be sure to check out Easterseals job training services.

 

Dad talks kindergarten: A milestone for his daughter with a disability

Elena

Elena on her first day of school.

Editor’s Note: Chances are your social news feed has been peppered with back-to-school pictures this month, and today we have one more to share with you along with a great story.

As a school administrator himself, frequent Easterseals blogger Bernhard Walke has seen many first days throughout his career. But this year, the start of school marked a major milestone in his family. His daughter Elena, who has a disability, is non-verbal, and uses a wheelchair, started kindergarten in a mainstream classroom. Bernhard tells us, in this first part of a two-part entry, what it was like for him to help her get ready for her first day.

Our daughter Elena began kindergarten this month, an achievement that has been years in the making. I can only think of one other morning when I was more nervous: my wedding day.

On the first day of kindergarten, all eyes would be focused on my daughter with a disability rather than me. And that’s what scared me.

Ever since she was ten months old, Elena has been working at Easterseals DuPage and Fox Valley with a physical, occupational, and speech therapist – along with countless other assertive
technology experts and family members – to be able to live a life with the greatest ability possible.

Elena has been working very, very hard to get to this point, and her work seemed to be paying off. When school officials recommended Elena go into a mainstream educational setting, my wife and I felt like we had just ingested a mixed cocktail of excitement and fear.

Of course, we couldn’t be prouder of her. Elena has always been a trailblazer and pioneer, but sometimes we fear at what cost. I couldn’t help but look at her first day of kindergarten as a marker of her progress.

In anticipation of Elena’s enrollment, my wife and I met with the school’s principal last spring. During that meeting the principal mentioned that Elena would be the first non-verbal student who uses a chair for mobility to attend the school. There is an immense amount of pressure on her now that she’s “the first,” because many of “the firsts” in educational history haven’t always run as smoothly as possible.

The night before Elena’s first day, my wife and I picked out her school outfit, packed her backpack, charged her computer, signed the necessary forms, prepared her lunch, and got to bed a little bit earlier.

That morning, Elena scarfed down her breakfast in a record 30-minutes, and we loaded her into her wheelchair for the one-block walk to kindergarten.

We moved to a handicapped accessible home on the other side of town just six months ago, so Elena is a bit new to the neighborhood. Most of the kids are still getting to know her. None of this bothered Elena, though: as we rolled down the block and onto the playground, Elena’s trademark smile
appeared and cast a spell on several adults and students around her!

Stay tuned for Part Two of Elena’s First Day of Kindergarten to see how she nails it!

 

Last chance to witness glory: Paralympics end Sunday in Rio

Book coverLast month I happened to catch a story on Weekend Edition and heard NPR’s Rachel Martin talking with Lisa Fenn, the author of Carry On: A Story of Resilience, Redemption, and an Unlikely Family. The two athletes Lisa Fenn profiled in her book and in a documentary for ESPN’s Outside the Lines program were there at the interview, too: Dartanyon Crockett and Leroy Sutton.

The story really caught my attention, and I’ve been watching for news of Dartanyon Crockett at the Paralympics in Rio.

Okay, I’ve been listening for news of his judo matches there. Because, just like Dartanyon Crockett, I am legally blind.

Crockett was one of the best wrestlers on his high school team. Leroy Sutton lost both legs in a train accident when he was 11 years old, and when Leroy transferred to Dartanyon Crockett’s high school he took up wrestling. Dartanyon Crockett carried him to practices and wrestling meets, and they took some high school classes together, too, always sitting side by side. “Dartanyon would get up to sharpen Leroy’s pencils,” an ESPN story last month reported. “Leroy ensured Dartanyon could read small print.” Both students graduated from a high school in Cleveland where fewer than 40% go home with a diploma.

Leroy Sutton went on to college from there, and Dartanyon Crockett moved to the Olympic Training Center in Colorado Springs after coaches there recognized his natural athletic abilities and invited him to learn the Paralympics sport of judo.

All their hard work paid off. Last Saturday, September 10, 2016, Dartagnon Crockett won his second Paralympic Judo bronze medal (he won a Bronze Medal in judo during the 2012 Parolympic Games in London, too).

NBC Olympics have been presenting more than 70 hours of coverage of the Rio Paralympic Games across NBC, NBCSN, and the NBC Sports app –that’s an increase of 64 hours from the London 2012 Paralympic Games. The -by-play commentators, analysts and reporters are all former Paralympians. The Closing ceremony for these 2016 Paralympic Games is Sunday, September 18. Tune in and watch — or listen. You’ll be rewarded.

 

Executive Producer Jon Murray talks with us about Emmy winning ‘Born This Way’

Jonathan Murray

Television producer Jonathan Murray

A big congratulations to the groundbreaking show, Born this Way, which won an Emmy this week for best unstructured reality show!  The show, now in its second season, airs on Tuesday nights on A&E and focuses the lives of a group of young adults with Down Syndrome and their families.

Easterseals sat down with Executive Producer Jon Murray to talk about his vision for the show and what he’s learned from the cast. Check it out.

 

5 Reasons to Watch the Paralympics

This summer, the spirit of the Rio 2016 Olympics was felt in full force. We sat in front of our TV and computer screens, watching as some of our country’s greatest athletes broke records, won medals, and displayed excellent sportsmanship. No need to feel the post-Olympics blues, now it’s time to tune in to the 2016 Paralympics!

From September 7-18, watch incredible athletes with disabilities participating in sporting events like sailing, wheelchair fencing, wheelchair rugby, powerlifting, and rowing. Here are five reasons to watch the Rio 2016 Paralympics:

1. This year, the U.S.A. will send its largest delegation of athletes to the Paralympics ever. The Paralympics are growing every year, which means more and more people with disabilities are getting outside of their comfort zones and breaking down barriers. Meet the athletes:

2. Track and Field events will be full of action, representation, and firsts. It’s no surprise that track and field events are highly anticipated in the months leading up to the summer Olympics and Paralympics. This year, the track and field events will feature the largest range of disabilities and the largest team for the U.S.A. with 76 athletes. Be sure to watch out for Grace Norman and Allysa Seely, who will compete in both track and field events and the newest event, the paratriathlon.

3. 35 veterans are on team U.S.A. As supporters of veteran reintegration, we are excited to see that there are 35 military athletes on Team U.S.A. While most of these athletes are veterans, four are still active duty. Branches of the military represented include the Army, Marine Corps, Navy, and Air Force. Be sure to check out the men’s volleyball team, where five of the 12 players are veterans. Other sports with military athletes include swimming, archery, shooting, and paratriathlon.

4. NBC added 60.5 more hours of coverage of the Paralympics. With disability in the spotlight in shows like Born This Way and Speechless, it’s clear that the more people with disabilities are given a voice, the more inclusion is possible. That’s why we’re so excited that NBC and NBCSN will air 66 hours of the Paralympics. We think Sir Philip Craven, the president of the International Paralympics Committee said it best: “This is tremendous news for sports fans too, many of whom will be able to watch a Paralympic Games live for the first time.” (via)

5. Everybody is represented. The tallest Paralympian is 6’7” and the shortest is 3’ tall. Paralympians competing have visual impairments, intellectual disabilities, prosthetic limbs, and an array of other disabilities. So many people are represented on this international stage. And we’re excited to cheer them on.

 

Disabled and fighting for the right to vote

vote-1278835_1280During every election cycle I am astonished to hear about the percentage of average able-bodied Americans who “don’t bother” to vote. If the story I heard today on NPR’s Morning Edition program doesn’t inspire them to get to their polling places in November, I don’t know what will.

The story was about David Rector, a former producer for NPR who lost his ability to walk or speak after a brain injury. David’s fiancée was appointed his legal guardian afterwards, and the appointment of a legal guardian meant that Rector lost his right to vote.

Rector recently went to Superior Court in California to file a request to have his voting rights restored, and his fiancée said he was still able to communicate his wishes to a court clerk – he used the electronic voice on his eye-tracking device to say “I, David Rector, want my voting rights restored immediately.”

Under California law, individuals with guardians have to express a desire to vote to be able to do so. David Rector is one of more than 30,000 Californians — and an unknown number of others in the U.S. — who’ve lost their voting rights under state guardianship laws. Those laws vary widely around the country. The NPR report said 11 states do not disqualify individuals from voting because they have a mental disability, but individuals under guardianship in other states are routinely barred from voting. From the NPR story:

“The problem with those laws is that a determination of guardianship or competence really has nothing to do with someone’s ability to vote,” says Jennifer Mathis, director of policy and legal advocacy at the Judge David L. Bazelon Center for Mental Health Law in Washington DC . “They have to do with someone’s ability to ensure their basic health and safety needs.” She says just because someone can’t do one thing, doesn’t mean they can’t do another.

In some states, individuals who have legal guardians must show they have either the ability or desire to cast a ballot before being allowed to do so, which can mean voters with disabilities are held to a higher standard than everyone else. “Those people end up having to answer questions like: Who’s the governor? Who’s the president? Who’s the mayor? Why do you want to vote? How would you vote on a particular issue? And those are exactly the type of questions we never would impose on voters without disabilities,” Mathis said, arguing that this violates the Voting Rights Act.

Rector’s legal guardian said he is very eager to vote this November. He spends much of his time following the news on TV and radio, and his legal guardian says he is better informed than many voters. Now, they just hope they’ve convinced the judge.

 

Tips for wheelchair-friendly train travel

accessible train car

The accessible sleeper cars on Amtrak are roomy and comfortable.

Are you traveling sometime soon? With the taste of fall already in the air, it may be tempting to just stay home and kick back. But before you spend your holiday weekend watching train video footage on Netflix thanks to the latest ‘Slow TV’ phenomenon, I highly recommend planning an actual train trip instead!

My husband, George, and I packed our bags a few weeks back, made sure we were well stocked with activities, snacks, and the perfect soundtrack, and we climbed aboard Amtrak’s “City of New Orleans” to journey from Chicago to New Orleans.

It was our first overnight train trip, and I was pleasantly surprised to discover how wheelchair friendly the train is for passengers like me.

City of New Orleans TrainWe reserved a wheelchair accessible bedroom, complete with an accessible restroom.  Our tickets were affordable, and meals are included.  The meals, which were really tasty, were delivered to us by an attentive porter because I wasn’t able to get to the dining car – it’s upstairs and the train aisle ways are too narrow for wheelchair access. Still, I didn’t feel like I was missing anything, and it was nice having a private, fairly roomy, quiet car to ourselves. The beds were pretty comfy too. Although George, who rolled around on the top bunk, would tell you a different story.

Speedy travel it was not – our one-way trip took roughly 17 hours — but it sure was an adventure! I even had the time to try my hand at learning chess. Playing chess is going to take some more practice, and I plan to get some in on my next train trip.  Trust me… the real thing’s even better than Slow TV!

Sound interesting? Here are some tips for planning an accessible train trip:

  • Call Amtrak to make your reservation instead of booking it online. The agent will have questions about everything from wheelchair equipment to addressing special needs that aren’t accounted for on the Amtrak website.
  • Book early! The handicapped accessible “H” cars – or bedrooms — are very popular.
  • You don’t have to check your bags. There is plenty of room for a suitcase or two on the racks outside of the accessible sleeper car. That said, it’s nice to have an overnight bag handy in the car itself.  And if you want to check your bag, you must do so at least one hour before departure.

If you have train travel tips of your own to share, we’d love to hear them. Leave us a comment.

 

Here’s to the super-humans

racersAn opinion piece in Newsweek this week boldly claims that the Olympics in Rio were just a prelude, and the Paralympics are the real sporting event of the summer of 2016.

Just like the Olympic Games, the Paralympic Games show athletes who battle fatigue, their opponents, and the odds so that they can bring home medals for their countries, but the Newsweek piece says Paralympians have to do even more. They battle “against the challenges posed by ‘normality’ itself.”

The opinion piece was written by John Head, a senior lecturer in prosthetics and bio-mechanics at the University of Salford in England, so it comes as no surprise that he focuses on the efficiency of the new-fangled prostesis the athletes wear. He introduces us to Van Philips, an amputee engineer who examined the key components of running and decided to create a prosthesis that doesn’t look like a human foot. From the article:

His resultant “flex foot” or “blade” became synonymous with the Paralympic sprinters and runners who epitomize the modern Paralympians. Made from layers of laminated carbon fibre, and presented in that now familiar “C” shape, the “flex foot” could absorb large amounts of impact energy, at the beginning of the gait or running cycle, which would protect the prosthesis user from painful forces around their residual limbs.

It could also store and release this energy at the end of gait cycle during what is called the “push off” phase, literally “springing” the user forward along the track.

The result is a foot that redefines the possibilities of prosthetic running, and I must say, appreciated that the author went out of his way to remind sports fans that these fancy feet and other prosthetic devices are only as good as the people using them. He writes, “It is only in conjunction with a dedicated, elite, talented athlete that we can see the stunning performance outcomes that both enthrall and amaze.”

You don’t have long to wait to watch these stunning athletes –the 2016 Paralympic Games in Rio start next week. Let the games begin!