A new memorial in Berlin: Forgive but never forget

Blue wall of the memorial in Berlin

Blue wall of the memorial in Berlin

I am blind, and my husband and I have a son who has physical and developmental disabilities. I usually have a lot to say when writing blog posts about disabilities, but when I was asked to write about a new memorial in Berlin, I originally said no.

The memorial commemorates the children and adults with disabilities who were murdered by the Nazis when Hitler was in power, and an Atlantic Monthly article about all this was so disturbing I didn’t want to deal with it. Here’s how the article begins:

In July 1939, Richard and Lina Kretschmar, two farm workers from eastern Germany, wrote to Adolf Hitler to ask for permission to kill their son. Gerhard Kretschmar had been born five months earlier with one arm, one leg, and vision loss. The Kretschmars were loyal Nazis, and “The Monster,” as they referred to Gerhard, was considered both burdensome and incompatible with the pursuit of genetic perfection. Gerhard was killed a few days later at a hospital near his home, likely by lethal injection.

That story makes my stomach turn every time I read it. I know these horrible things happened, but I don’t want to read accounts of them, and I’m not exactly sure I want a memorial erected to remind me of them, either.

When my husband got home from work that evening, I told him how I felt about all this. He listened, and he was understanding. But then he wisely reminded me of a story I’d told him once, about a visit I’d taken to Dachau when I was a 20-year-old exchange student.

I could still see back then, and my visit to the former Nazi concentration camp was my first real confrontation with the war crimes I’d read about in memoirs and history books. I saw where prisoners had been punished for breaking camp rules, where Nazi doctors conducted their “medical experiments” on prisoners, and where American liberators found piles of dead bodies after the war was finally over.

My tour of that concentration camp was sobering, and I think it was something I needed to do to honor the wish of its survivors: “Forgive but never forget.”

As time passes, World War II seems long ago. Today’s younger Germans could decide to try to sweep memories of those terrible times under the rug, but instead they feel a stronger need to remember the horrors that began in their country. I need to remember those horrors, too, even if it makes my stomach turn when I do. I commend Berlin for unveiling this new memorial to innocent victims like baby Gerhard. Forgive but never forget.

 

Recent studies on autism and what we know for sure

A couple of interesting articles were published recently on the prevalence of disability in young children and the identification of disability in young children.

First, the Academy of Pediatrics reports that the incidence of childhood disability is actually growing, and while the prevalence of disability is higher among children living in families with low incomes, the rate of growth in the number of children with disabilities living in higher incomes is growing faster.

Then last week, the Wall Street Journal ran a story about how children with autism may be identified as babies. We’ve known for a while that autism can be diagnosed reliably around 2 years old, and that young children who receive therapy tend to do better than those who are diagnosed after they start school. Here at Easter Seals, we want to help EVERY child get a great start in life. We want every parent to feel well equipped with the knowledge of how to help their child learn and grow. And, for young children with disabilities, we have decades of proof that these kids succeed in school alongside their peers when they receive early intervention services. That’s why we encourage parents and caregivers nationwide to take the Ages & Stages Questionnaire. This child development screening tool is available online and at no cost, in English and Spanish, and it helps parents and caregivers track a child’s development through age 5. The survey, which should be completed every six months until the child reaches age 5, helps a parent to know exactly how their child is growing and learning. And we all know that knowledge is power.

The jury is out on why there are more young kids with disabilities and why the prevalence of autism continues to grow. But, armed with the right information, services and supports, young children can learn and grow and be hugely independent and successful adults.

Spread the word.

 

Polio and the Ken Burns documentary on the Roosevelts

“The Roosevelts: An Intimate History” debuted last night on PBS, and if you ask me, this seven-part documentary by Ken Burns is living up to all the good reviews it’s received so far.

FDR Blog

Franklin D. Roosevelt was diagnosed with polio in 1921.

Last night’s Part One ended with U.S. Vice President Teddy Roosevelt becoming president after William McKinley is assassinated. It was great, and now I’m really looking forward to Part Four on Wednesday. That episode is called The Storm, it covers the years between 1920 and 1933, and I’m curious to find out how Burns will handle FDR’s polio diagnosis during that time.

The treatment of polio is part of our history here at Easter Seals. In the early 1900s, the dramatic increase in polio cases caused the disease to be regarded as an epidemic. Thousands of children and adults were paralyzed by polio, and Easter Seals founder Edgar Allen raised funds and built a hospital where children with polio could stay and attend school. Children were also fitted for crutches and leg braces at the hospital.

Today, Easter Seals provides services to people with all sorts of disabilities, and we still treat people with post-polio syndrome.

I’m hoping Part Four of the documentary will show some of the exercises and equipment used early in the 20th century — maybe that way I’ll get a better idea of how therapies have changed over the years. Guess we’ll all just have to stay tuned.

 

Coming of age after 9/11

As I reflected on what 9/11 means to me, I got to thinking about those with whom I served who enlisted after 9/11. This blog post is for them, and for all of our readers who came of age after 9/11.

 

There’s a good reason why the number of veterans from Iraq and Afghanistan will jump by 26 percent by 2016.  These veterans joined the military after terrorism invaded the U.S., driving increased security and also increased patriotism and civic engagement. It was this desire to tangibly support their country that propelled many so-called “millennials” to volunteer for military service, even though it meant deploying to Iraq or Afghanistan.

I personally believe that 2 million Afghanistan and Iraq veterans, nearly two-thirds of whom are millennials, are poised to become our nation’s next “greatest generation.”

I led thousands of millennials during multiple tours in Iraq, including as the Brigade Commander in the volatile Diyala Province for 15 months in 2006-2007.  I watched my troops carry out remarkable feats of bravery and perform selfless acts of courage.  They demonstrated all the qualities one could want in the toughest of situations – smarts, guts and compassion.

But if I asked you today if you know someone who served in the U.S. military, how would you answer?  Too often, the response is no.  So to me, a good place to start is by connecting those millennials who have served with those who have not.

I’m committed to doing this because we now need the peers and classmates of these young veterans to step up and leverage their social connections to help support the next “Greatest Generation.”  How can this new generation support its peers?  It can be done through small, simple acts.

•    Think local.  Support an organization in your community that helps veterans such as Easter Seals.  Volunteer once a week or once a month right where you live.
•    Be inclusive.  Through that community organization, you’ll meet many vets.  Why not get to know one better through peer-to-peer mentoring?  Introduce him or her to your social network and watch the connections grow.
•    Encourage hiring.  If you’ve created your own start-up, consider hiring a vet.  You’ll be surprised at the leadership and organizational skills they bring to the table.  Or ask your HR department to be more proactive in hiring young veterans for entry-level positions.
•    Tutor a vet.  If you’re still in school, see if your college has a Student Veterans of America chapter.  Offer your services to tutor or review papers.  It’s another way to expand your network and see a different world view.

Your generation has spent more than a decade at war.  As we transition into peace, it’s time to reach out to the 1.25 million veterans who are part of the Millennial Generation.  With just a small amount of your understanding, attention and support, they are ready to become the next “Greatest Generation.”

(This blog is adapted from a 2013 commentary published on PolicyMic.)

 

Do you know the crosswalk laws? Why you should!

Donna Smith and her Seeing Eye dog Farlow. Have dog, will travel.Six years ago a motorist ran over my foot when I attempted to cross a driveway in a supermarket parking lot. My foot was fractured in multiple places, took months to heal and still causes me pain. It took me months to be able to cross driveways and roadways without significant stress, and to this day, I can’t filter out the distraction of what could happen if a motorist fails to yield or stop when I’m crossing the street.

In the grand scheme of things, mine was a fairly minor accident. Too many other pedestrians are not so lucky: pedestrian deaths constitute 14% of all traffic-related fatalities in the U.S.

The number of pedestrian fatalities is rising, too. It increased by 6.4% since 2011 (4,743 pedestrian deaths in 2012). Pedestrian injuries increased 10% over statistics reported in 2011 as well. With these staggering numbers in mind, I’d say that we could all benefit from learning a little more about crosswalk laws.

Walking and using public transportation lessens automobile congestion, and it can improve health and environmental conditions, too. The focus on the benefits of walking means states are getting tougher enforcing crosswalk laws.

Crosswalk laws differ widely from state to state, and the nuances that make them different can be confusing. Fortunately, an article by the National Conference of State Legislatures lists information about crosswalk laws state-by-state here.

Our roadways are shared by motorists, cyclists and pedestrians alike. While state laws have the final word on which party is to blame when accidents occur in crosswalks, we as users of roadways have the responsibility to exercise precaution and consider the safety of those around us. Taking time to consider the best way to approach a shared crosswalk takes only a very few minutes of our time. Failing to take the time to make the best decision possible could result in devastating consequences that could impact the rest of our lives. Please travel safely!

 

Learn about accessible transportation resources at Projectaction.org.

 

The lipreading scores are in!

Remember last week’s post about a lipreading challenge? Cam Robbins (Interactive Marketing Manager here at Easter Seals Headquarters) and I took the challenge, and, as promised, we are here to report our scores.

Mac

Score: 26 out of 55 correct

Notes

I have a diagnosed learning disability (LD), so you’d think with my LD, I would know better than to assume anyone can lipread. Sometimes I just forget.

I have a lot of trouble with accents (enough trouble that sometimes I need captions for movies. The web site with the lipreading challenge is British, not American. As if lipreading isn’t hard enough to begin with! I got 26 out of 55 right, and according to the website, that’s actually really good. Say what? I don’t think mom would have been pleased if I ever came home with a 47% on a test.

I looked at each video more than once (this felt like cheating after the third time) and even though it was a multiple choice question, and I had 4 options to choose from, I got fewer than half of them right. Here are my reactions to specific challenges:

  • Third question. I… what? This woman spoke more with her teeth than her lips, so it was a lot harder to understand. I had to totally guess on that one.
  • Fourth question. Now I have the opposite problem. This woman barely moved her lips. I watched this one again and again and again, and I had no idea. Had to resort to another process of elimination.
  • Seventh question: I groaned when I opened this one. He had a mustache, and a beard! I had to guess this one because I just couldn’t read his lips at all. Facial hair and lip reading do not get along well.
  • Tenth question. This woman appeared really excited by the way she moved around so much. I could tell she had a thick accent, but that was about all. I could only get the first part of what she was saying and had to guess at the rest.

Overall, it was a frustrating and eye-opening challenge for me, so let’s see how Cam did.

Cam

Score: 44 out of 55 correct

Notes

The challenge was multiple-choice (it gave you answers to choose from after every challenge), but I wanted to keep the challenge legit, so at the start I didn’t read the answers before I watched the video. On my own I could only catch one or two words on the first video I watched, and there was no way I could have figured out the entire phrase. So, I read the answers and used process of elimination.

I couldn’t always decide between two answers on the rest of the videos, and when that happened I’d watch and re-watch the video until I decided what they were saying. “Boy” instead of “joy,” for example.

When I got to question 10 and saw that the woman on that video was really excited, I figured her emotional state would make it easier to interpret what she was saying.

I figured wrong: her excitement actually made it more difficult to figure out where the words began and ended. I watched some of these videos many, many times, but of course in real life you can’t watch and re-watch a conversation. I feel like I was cheating. I’m pretty sure I’d fail lipreading in an actual conversation. Not being able to understand word-for-word or even half of what people were saying was frustrating and surprisingly tiring.

*Mac here again. I challenge you to take the lipreading challenge and leave your score in the comments! What surprised you about lip reading? Which challenge did you find particularly easy? Which ones were difficult? Don’t be shy, share your experience. Read my lips: we want to hear from you!

 

Trusting our kids who are adult with disabilities to the world

Our son Gus was born with a rare genetic disorder called Trisomy 12p, and at first, no one was sure he’d make it past that first day. Thanks to excellent and skilled medical care, Gus did make it: today, September 3, is his 28th birthday.

Gus lived with us until he was 16 years old, and his dad and I went to visit him at his group home Saturday to celebrate. Here’s my husband Mike with a guest post about that visit.

Happy Birthday, Gus

by Mike Knezovich

Gus and Beth.

Gus and Beth

Every time we visit our son Gus in his little yellow house in the quiet little town of Watertown, Wis., we love seeing him. And we are always, just a little, discombobulated. Even after 12 years of his living away from us.

Gus is severely disabled. He can’t talk. He can walk a short distance, clumsily, using a walker, but he spends more time in his wheelchair—which he can propel and steer well enough to get around the little ranch home he shares with three other developmentally disabled guys, and with the staff of Bethesda Lutheran Communities, which operates the home.

He invariably recognizes us, letting us know by letting out a sort of shriek of joy, just as he claps his hands right in front of his face. He makes Gus noises—anyone who’s been around him knows what that means. For those who haven’t, I don’t think I can describe them adequately. But they tell you a lot—whether he’s happy, sad, puzzled, anxious.

When we visited to celebrate his birthday, he was especially pleased to see us. The shrieks and claps and laughs went on pretty much all afternoon.

Beth caught a few rays on Saturday.

Beth catching some rays

We walked him in his wheelchair to the little park across the street. We wheeled up to a picnic table, where Beth reclined to catch some rays. Some kids were there—and it was a scene that I remember well from my youth but which I rarely see today. They were anywhere from, oh, 5 to 11 years old. They were playing kickball on the baseball diamond, while their bikes sat parked near the pavilion.
There were arguments about in-bounds and out-of-bounds, cries of joy when some one kicked a good one. And then they broke up and reconvened to start a new game of dodgeball of sorts on the playground. It was a game that an outsider could only partly understand, but they clearly had crafted and memorized their own rules.

What really stood out about the whole scene: There was not an adult in sight. The kids had organized this themselves. It was straight out of our childhoods. During summer vacation, we’d leave early and come back late. Entertaining ourselves with invented games, getting bored, inventing new ones. It all was kind of quietly astounding, a dreamy escape to the past.

Gus enjoyed it all, too. He can tell when people are having fun, and he gets tickled by that.

While we sat and took in the breeze and the sun, a little guy— one I reckon to be 5—came by to pet Beth’s Seeing Eye dog Whitney, who was off harness. He told us about his dog. Pointing to Gus, he asked whether “that guy broke his knee.” After some back and forth, we surmised that his grandma had “broke her” knee and had been in a wheelchair, hence the question.

Our new buddy eventually returned to the playground, and we walked Gus back home. We said our goodbyes. It was a good visit.

When he first moved away, we’d stay longer, and usually stay overnight to see him again the next morning. Things changed when we realized: He’s happy to see us, but really, he’s got his own life now. Not like our contemporary’s kids—who are going off to college, starting careers and such. But it’s his life nonetheless. He’s happy to see us, we’re happy to see him. It’s our normal.

Always, I wish we lived closer than the 2-1/2 hour drive we have, so we could just drop by when we felt like it.

But always, I leave grateful that he has a home. That he’s done just fine out of our house. There have been glitches, sure, but there were glitches when he lived with us. We didn’t get everything right.

There was a time when I thought I could never let him live elsewhere. To trust him to the world. That’s what all parents have to do. In that way, Beth and I are like all parents who watch their kids leave. Except we’re not. Of course we’re not.

Years ago Beth, in her infinite wisdom, arranged for me to talk to another father who’d thought the same way about his son as I did—no one can take care of Gus like we can. Like I can. And that father ended up hitting an inevitable wall.

That helped me see ahead, and realize, I needed to learn to trust Gus to the world. For me, for Beth, and for him. So far the world’s doing a good job.

*Back to me, Beth. Every family living with a person who has a disability faces unique challenges. Early detection and intervention are the essential first steps, but there is also an urgent need for increased funding and services for children once they grow up. A number of our Easter Seals affiliates offer services for adults with disabilities, and you can search here to find out if the Easter Seals near you is one of them.

 

What happened to the blind triathlete?

I wrote a post here last month after the director of NYC Swim’s Brooklyn Bridge Swim decided that athletes with disabilities would have to pay an extra fee to swim in the race. My friend Eliza is a strong swimmer (she’s completed six triathlons) but she happens to be blind. The extra requirement for the swim across the East River was unfair to Eliza (and I agree!), so Eliza didn’t participate.That's Eliza on the right with Megan Leigh, one of her guides. (That’s Eliza on the right with one of her guides Megan Leigh.)

Eliza was disappointed, but she knew this was an opportunity to get word out by talking to the media about the struggles athletes with disabilities sometimes face when trying to compete. “We didn’t get to swim,” she said. “But getting the word out there made me feel a lot better about what happened.” She was glad the stories in the media drew attention to the issue, and pleased they generated conversation and support. “And you know what?” she told me with a shrug. “There are always bigger and better races to be raced!”

Sure enough, last Sunday, August 24, Achilles International volunteer Julie Bennett guided Eliza in a Half Ironman Triathlon in Old Orchard Beach, Maine. Eliza swam 1.2 miles in the ocean, rode a tandem for 56 miles and ran 13.1 miles. They finished at 6:03, one entire hour faster than what they were hoping for. Not bad for a young woman who only started racing in triathlons two seasons ago, eh? Her guide Julie says that after Sunday’s unqualified success, Eliza has “blossomed into one of our most dedicated and inspirational athletes.” I’ll say. Go, Eliza, go!

 

You’ve done the ice bucket, now take the lipreading challenge

My SO (Significant Other) and I went to an amazing birthday party at a bowling alley/bar last weekend, but the live band was so loud I couldn’t interact with everyone. I have an auditory processing learning disability, so loud background noise/music (and especially heavy bass) makes it impossible for me to hear more than one thing at a time.

I spent a majority of the night trying to lipread my friends, and I was only able to understand about 20 to 30 percent at best, and that was only if they didn’t have an accent or facial hair. I got to feeling so frustrated and isolated that I finally asked friends to speak right into my ear or write things down.

All this had me thinking: how well do people with hearing disabilities deal with lipreading, not to mention the expectations to be an expert at it? At a meeting a few months ago, our summer intern Sara introduced herself and explained that she is deaf. In response, some people spoke louder.

Kind of a face palm moment. Some of us assumed that if Sara was deaf, she could read our lips, and speaking louder would help Sara lipread. The ability to lipread is actually #4 on our Myths and Facts about People with Disabilities list:

Myth 4: All persons with hearing disabilities can read lips.
Fact: Lipreading skills vary among people who use them and are never entirely reliable.

In a very interesting article in the Stanford Alumni magazine, writer Rachel Kolb explains more about the pitfalls and benefits of lipreading. Kolb knows all of this firsthand — she has a hearing impairment and graduated from Stanford in 2012. In her article, she says even the best lip readers only discern about 30 percent of what is being said.

With all this in mind, I found a lipreading challenge on an American Sign Language (ASL) forum, and Cam (our social media guru here at Easter Seals Headquarters) agreed to take it with me. We had some surprising (and not so surprising) results, but before we share our scores, we have a challenge for you blog readers out there.

Cam and I challenge you to try lipreading, too. Take the lipreading challenge and then leave your scores and your reactions to lipreading on our Easter Seals Facebook page. Keep your eyes on the Easter Seals blog for a future post, where Cam and I will share our scores. I can tell you right now, one thing we both learned is that lipreading is not as easy as we thought it might be. Good luck!

 

Comcast Internet Essentials program increases family-focused digital literacy

Last year, I wrote a post about one of our fabulous corporate sponsors, The Comcast Foundation and its Internet Essentials program. I wanted to update you on this resource because the progress is remarkable!

Internet Essentials  offers low-income families in Comcast markets high-speed Internet service, a low-cost computer, and access to free Internet trainings. It’s an affordable solution that supports Easter Seals families and other families across the country, too. This can be a huge help, especially now that it’s time for back-to-school preparation.

The Internet Essentials program just goes to show how Comcast is working to expand digital literacy by bringing technology into every home. A blog post written by David L. Cohen, Executive Vice President and Chief Diversity Officer in Community Investment at Comcast, reports that the Comcast Foundation has connected more than 350,000 families to the Internet in the past three years. Three hundred fifty thousand families means 1.4 million individuals. That’s more than the population of San Diego or San Antonio, almost the size of Philadelphia, and more than the population of 11 states, including Maine, New Hampshire, Alaska, Montana and Hawaii!

New this year, Comcast will include up to six months of complimentary service for any new family that has not yet applied for Internet Essentials. Comcast knows there is no more important back-to-school supply than Internet service at home. In today’s classrooms, as well as in the workforce, students need to be digitally ready. Since Internet Essentials launched in 2011, Comcast has:

  • invested more than $200 million in cash and in-kind support to help close the digital divide
  • reached more than 1.75 million people through the program’s non-profit digital literacy partners
  • sold nearly 30,000 subsidized computers at less than $150 each.
  • distributed nearly 37 million Internet Essentials brochures at no cost
  • broadcast nearly 4 million
  • welcomed nearly 2.2 million visitors to the Internet Essentials websites in English and Spanish and the Online Learning Center
  • offered Internet Essentials to more than 30,000 schools and 4,000 school districts in 39 states and the District of Columbia.

The Comcast Foundation has also partnered with thousands of community-based organizations, government agencies, and federal, state and local elected officials to spread the word about Internet Essentials. They’ve dedicated $1 million in grants to create Internet Essentials Learning Zones, where networks of non-profit partners are working together to enhance public Internet access and increase family-focused digital literacy training in Atlanta, Chicago, Denver, Fresno, Miami, and Seattle, among others.

Thank you, Comcast. Your Internet Essentials program empowers people with special needs and their families and helping them to achieve the best quality of life possible.