Girl on the run: you do what with your guide dog?

If you haven’t signed up to follow BlindBeader’s Life Unscripted blog yet, I highly recommend you do. BlindBeader is a gifted young writer who lives in Edmonton, Alberta, with her husband, 3 cats and guide dog Jenny. My other friends who are blind and run go with a sighted guide, but BlindBeader runs with her guide dog. You can read BlindBeader’s Girl on the Run: you do WHAT with Your Guide Dog? post in its entirety on the Life Unscripted blog to learn more about her decision to take up running as a form of exercise. For now, here’s an excerpt to give you an idea of how she manages to run using her dog as a guide.

by BlindBeader

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

It all started a couple years ago after a fundraising run; I had made a great connection with my guide runner, and she and I agreed to go running together. This would involve going home from work, leaving my guide at home, taking my cane, catching the bus, going for a run, catching the bus home… and to me, that was a lot of planning for a quick run, as much as I loved running with my friend. Add to this the fact that I have a guide dog who genuinely likes to go fast (and occasionally we have “arguments” about such things), and I figured I could at least try running with her.

A friend makes sports-style harnesses and I asked her to make one for me. It has a lot of room for the dog to move and acts like a traditional harness in all other ways. The pull in the handle took some getting used to, but once I understood the feeling of the pull in the harness, we were ready to go!

I started small (like, around the block small); if Jenny hated it, I didn’t want to make her run with me. She took to it so quickly that over just a few weeks, then months, we increased our speed, distance and complexity of routes.

Our winter was short, so it didn’t take long for us to really get moving this spring. This past month alone, we have done our longest run ever (more than 7 km), had our fastest ever run longer than 5 km, and did our first ever big group run in support of the Fort mcMurray evacuees. That last wasn’t a flawless experience, but it taught me how to handle it, and gave me hope for other big group running events later on in the spring and summer, and even beyond. My goal is to run an organized 10K by the end of the season; we’re well on our way!

I’ve made some mistakes along the way – misjudging if my guide wanted water (the answer is usually “no”) or underestimating her willingness to go at fast speeds – but when we have this matching jogging-pace speed and are completely in sync, there’s no feeling like it.

Many people ask me if I’ve ever been hurt; the answer is yes, but it’s got nothing to do with Jenny and everything to do with my thinking I know more than she does. If I listen to her quick, decisive, flawless guiding moves, I know I’m in good paws.

More than once I let Jenny set the route (or, at the very least, don’t direct her as much); our neighborhood is a veritable labyrinth of angled sidewalks, roads that intersect and curve around back to each other – a residential runner’s paradise. I can focus on my feet, on my music (90s music is the best to run to!), on the feeling of wind in my face and the smell of pine sap in the air. I don’t have to think too much about where I’m going, what street I’ve crossed, if I’m lost or not, I can just run. I know my guide will run me home when she needs a drink of water.

 

People with disabilities: Accessibility Engineering Team at Google needs input

Hands typing on laptop keyboard

Hands typing on laptop keyboard

I just got a notice from the Accessibility Engineering Team at Google that says they’re conducting paid research sessions, and they’re looking for users with all types of disabilities to take part and help them make Google more accessible.

The notice said Google will be conducting studies in-person at offices in San Francisco and New York City. If you don’t live near either of those cities, you can still participate; they’ll be conducting some studies remotely via video or phone.

“User research studies help us improve Google products by allowing us to get feedback directly from our users,” the message said.

Here’s a link to the application form if you’re interested in signing up for a Google accessibility study and testing their products. When you sign up, you aren’t immediately enrolled in a study – but you’ll get notice when studies are being held.

I just signed up myself, and filling out the form took about ten minutes. Once I was done, I was given the link to a website I can go to anytime I want to opt out of being contacted for these studies — participation in Google’s User Experience Research studies is completely voluntary.

 

Easterseals launches revitalized brand bringing renewed purpose

Randy Rutta

Easterseals CEO Randy Rutta

Easterseals CEO Randy Rutta this week talked about our new brand initiative on his Huffington Post blog.

“Our goal is largely two-fold: one, to capture and communicate the work Easterseals does for and with people with disabilities right now; and two, to introduce Easterseals to the millions of people who are experiencing disability today, but don’t yet know our history and expertise.”

Read the post in its entirety.

 

Lifelong memories from Camp Easter Seals circa 1980s

David Hamrick

David Hamrick

Today, guest blogger David Hamrick shares his memories of Easterseals camp in the 1980s.  Now an adult with autism, David has been a longtime friend of Easterseals, most recently participating in our social media series about love, dating, relationships and disability in February. We hope you enjoy his trip down memory lane as much as we did.

I had the privilege of attending Camp Easter Seals when I was a young kid back in the late 1980s.  Most of my visits were at the Eastern Virginia facility just northeast of Richmond, and these were either weekend stays during the school year or full-week stays during the summer.

Camp Easter Seals was the place for many important childhood memories.  One of the most important was coming to learn of my diagnosis of autism.  While I was at the eastern Virginia facility, I was wondering why everybody else there seemed to be either in a wheelchair or have some type of disability.  I asked why everyone there had a disability of some kind and I did not, and it was at this time that I was made aware that I have autism, and that is how I was eligible to attend Camp Easter Seals.  I then seemed to fit in better with the rest of the attendees.

During one of my week-long visits, I started becoming very homesick and wanted to talk to my parents back in Williamsburg, Virginia.  Since we were not permitted to use the office phones for this purpose, as an eight-year-old, I figured out how to use the pay phone and call my parents collect, which really impressed them.  The weekend visits were not as hard on me in that regard.

In addition to what I have described above, I have some additional fond memories of my trips there.  I remember really liking the camp counselor on my very first stay there, and I loved playing with her long hair.  She had this really large textbook that I wanted to read, and she was nice enough to let me read it.  She also took me outside at night to listen to the frogs chirping away in the woods.

Another thing I liked in addition to long hair, at the time, were shoulder blades. A couple of the camp counselors allowed me to rest my head on their upper back where the shoulder blades are.  If you are wondering, this was one of my autistic special interests at the time.

I also enjoyed all of the bonfires we had, the arts and crafts, and developing a good friendly relationship with the nurse there.

The thing I did not like was the mandatory rest period where we had to stay in our rooms for an hour during the middle of the day.  I got really bored since I did not take naps at that age.

 

 

A look inside Access Project: making theater open to all

This past week I attended two plays I would have never seen experienced otherwise.theater-curtains-down-morguestock

Let me explain.

Chicago’s Victory Gardens Theater moved to its new location at Biograph Theater (yes, the landmark building where gangster John Dillinger was ambushed) in 2006. The refurbished building boasts an elevator, ramps, wide hallways, widened doorways. A perfect location for Access Project, a nationally-recognized outreach effort to involve people with disabilities in all aspects of theater. Access Project designates certain performances as “Access Nights” by offering additional accessibility services to Victory Garden patrons. But wait…there’s more! Access Project also teams up with smaller theater companies (some who usually perform in small inaccessible spaces in basements, above taverns, down narrow hallways) from time to time to sponsor a one-night-fits-all production in Victory Gardens’ very accessible space.

Both productions I went to this week were produced by smaller Chicago theater companies hosted by Victory Gardens at the refurbished Biograph Theater:

  1. Once in a Lifetime, a 1930 play by George S. Kaufman and Moss Hart, was performed by Straw Dog Theatre company at Victory Gardens last night. . Chicago Tribune critic Chris Jones said the play is “seldom revived, and a lot of that has to do with the humongous cast of characters, featuring nearly 40 speaking parts.”
  2. Too Much Light Makes the Baby Go blind is a production by the Neo-Futurists that attempts to perform 30 skits in 60 minutes. They performed their “ever-changing menu” last Saturday night at Victory Gardens.

Dozens of characters. Actors playing multiple parts. Many, many scene changes. These particular two plays would have been recipes for blind disaster, but the thought put into the touch tours before each production — coupled with speedy Shayne Kennedy providing audio description in my headset for both plays — helped me take it all in.

Okay, maybe not all, but far more than I would have otherwise. Because, honestly, without this sort of special accommodation, I wouldn’t have considered attending these two complicated plays at all.
Audio touch tours are much more than just the tactile experience the name implies — a Touch Tour is a pre-performance program that gives those of us who are blind or have low vision an opportunity to:

  • participate in an artistic conversation about a production
  • experience a detailed description of the set, props and costumes
  • handle key props, set and costume pieces
  • tour the set with a sighted guide
  • meet the actors, hear the voices they’ll be using on stage, and learn about the characters they play

When the plays were about to start, I was offered an ear piece connected to a small device the size of an old-fashioned cell phone — it had a volume control dial so I could rev it up to hear the audio describer alert me to scene changes, character entrances/exits and other movements during the play. I usually can follow the play just fine and opt to go without the ear piece. Not this time, though. With one show offering 30 skits in 60 minutes, and the other featuring 40 speaking parts, trust me, I cherished those headphones — almost as much as I cherished the opportunity to seetake in these two fine productions.

 

Easterseals teacher recognized as an exceptional educator at the White House

Rockford’s Easterseals Autism Therapeutic School and Center teacher Stephen Szabo was recognized as an “exceptional educator” and invited by President Obama to the White House last week to participate in an event honoring the 2016 National Teacher of the Year and other great educators from across the country — like him! Here is Mr. Szabo with a guest post about the honor.

Stephen

Stephen Szabo at the White House last week.

by Stephen Szabo

I never would have thought in my entire teaching career that I would be nominated for National Teacher of the Year and be invited to go to the White House to meet other outstanding teachers nominated for the award. What a great honor to have the opportunity to be celebrated as a Great Educator of the United States at the White House among hundreds of other educators. Just being in the same room in the White House with such great teachers as well as the President of the United States is an unforgettable moment in my life.

I have been working at Easterseals Therapeutic School and Center for Autism in Rockford Illinois for almost four years. When I finished my college education, several teachers in Illinois were getting laid off, or were unable to get a job. Before taking a job at Easterseals Therapeutic School and Center for Autism, I was subbing in school districts in the Northern Illinois region, and working in retail, which was not fulfilling for me. I wanted to be a teacher.

Nearby regional offices of education were not hiring.  Then, I happened to look on a CraigsList job posting, and I found that Easterseals was hiring! I had never worked in the special education field, but I was called in for an interview.

Easterseals Therapeutic School and Center for Autism hired me as a paraprofessional. Working with students who have disabilities expanded my skills and my understanding, and eventually I went back to school to get proper certification to teach students with special education needs.

My career as a teacher at Easterseals has given me the chance to be a teacher in a unique setting. The classrooms I teach in are ever-changing due to the needs of the students. I have received a great amount of training from colleagues, and their mentoring guided me in the right direction as a teacher, molding me into the teacher I am today.

Easterseals gave me the opportunity to work in a school environment when no other place had even called me in for an interview. Educating students is my passion, and I cannot thank Easterseals, my administrators, and all the support staff enough for giving me the opportunity to do what I love to do.

 

The small meaningful moments that make my wife an amazing mom

Mother's Day

My wife Rosa and our daughter Elena.

Our Saturday routine usually consists of breakfast, followed by a visit to the library to pick out one DVD and twelve books (one or two in Spanish). All that decision-making is punctuated by a trip to the grocery store.

At the grocery store, we meander through the aisles, look for what’s in season or on sale and conjure up recipes for the week. Our trip concludes in the refrigerated aisle where Elena gets to use her eyes to select what flavor yoghurt she would like for the week. Rosa always helps the cashier bag the groceries in her reusable plastic mercado bags from Mexico, and she is always thanked for her effort.

After we go out to the car, unload the groceries, get Elena seated, and put away the wheelchair, Rosa always makes a point of putting the shopping cart either back into the corral or in the hands of the attendant who is collecting shopping carts from the lot. We have a handicapped-parking placard, but Rosa has never left a cart in the extra space provided or in any other part of the lot.

I often tease my wife, accusing her of doing this because she likes things to be organized. That, or she’s a strict rule-follower. In reality, I see her insistence to help bag the groceries and put away the shopping carts as a selfless act that makes a stranger’s day better and easier. She wants to be helpful. I’ve always loved this about her.

When I began writing about my daughter in a public forum, I received several emails from people complimenting us on the work that we’ve done with Elena to ensure that she is progressing both academically and physically. My blog posts often illustrate a picture of parenting a child with a disability that is full of endless potential, hope, and inspiration. Parenting a child with a disability can also be an exercise in intense frustration, isolation and diminishing patience.

Rosa treats Elena with small acts of patience, care, and tenderness that soothe and calm our daughter. Just like lending a hand to bag the groceries and put away the shopping carts, the small and humble gestures Rosa uses when she’s with Elena are the actions that make the biggest impact.

A few months ago, Elena had to undergo general anesthesia to receive Botox injections in her legs to loosen up some of her muscle tone. Elena emerged from the anesthesia disoriented and confused. As she collected her thoughts, she realized that her legs hurt. She was very angry and upset, and she was unable to verbally communicate what was wrong. She wanted her mother.

Rosa cradled our five-year-old, compassionately held her, and began to patiently give her some apple juice. Elena calmed from terrified shrieking to barely audible whimpering. Again, it’s not public grandiose gestures that make my wife a good mother, it’s the small meaningful ones that do.

Happy mother’s day, Rosa.

 

Does Mother’s Day make you sad? You’re not the only one

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 5 or 6 — 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 about Parental Grief and Adjustment to a Child with a Disability reassured me I am not alone when it comes to feeling a bit of sadness on Mother’s Day — in fact, Mother’s Day is one of the more common occasions of stress for families of a child with a disability. Ditto Father’s Day.

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day, and not always in traditional ways. This Sunday we’re heading to a White Sox game — it’s Family Sunday at White Sox Park. We’re proud of Gus, and I’m proud to be his mom. We’ll order hot dogs, clink our plastic cups at Sunday’s game, say “cheers” to Gus and hope for another White Sox win.

 

The fact of the matter is, “I am blind, and blindness takes extra”

LawnmowerI am pleased to introduce Jeff Flodin as a guest blogger today. Jeff is a social worker and a writer…and he’s blind.

…And I’m Blind

by Jeff Flodin

When the weed patch next door reached knee-high, I rapped on my neighbor’s front door. “You’ve got to do something,” I told him. He mumbled lame excuses about his lawn mower, his work hours, his wife and kids. I quoted city codes and cited civic duty. I appealed to his sense of pride. I finished with, “I keep up my yard,” and then, after a pause, “…and I’m blind.”

Had I really said that? Yes, and I was mortified. I had played blindness as my trump card — out of spite, with intent to injure. I felt mortified, yes, but justified as well because, damn it, things are harder blind than sighted. I’ve been both and I know.

With blindness, I’ve had to learn new ways to do old things. New ways require more time, effort and planning — if they’re doable at all.

But don’t call me superman because I water the flowers and cut the grass. I no more want to use blindness as a boast when I do one thing than use it as an excuse not to do something else. I neither wish to hear my neighbors say, “He keeps things tidy — for a blind man” nor, “No wonder things have gone to pot — the poor man’s blind.” I simply choose to put forth the time and effort. To me, it’s just the right thing to do.

I hope my “gotcha” didn’t cause my neighbor lasting harm. I suspect it was a product of anger, self-pity and my need to feel superior. This I own. But I like to think I was also stating a fact: I am blind, and blindness takes extra. And it’s OK to give myself a little credit.

This may be a rationalization and maybe I owe him an apology. Maybe I don’t. I’ll mull that over. Meanwhile, I just want him to cut his weeds.

This post originally appeared on Jalapeños in the Oatmeal, Jeff Flodin’s blog about digesting vision loss.

 

The next senator from Illinois will use a wheelchair

WheelchairThe presidential election and events like yesterday’s primaries get so much attention that some of the more interesting state and local races seem to be somewhat overlooked. The Senatorial race here in Illinois is a good example. Whatever the outcome, the next senator from Illinois will use a wheelchair.

Democratic Senate candidate Rep. Tammy Duckworth served in Iraq and lost both legs when a rocket-propelled grenade struck the helicopter she was co-piloting in 2004. Her Republican rival, incumbent Senator Mark S. Kirk suffered a stroke in 2012. He had to re-learn how to walk again after the stroke, and he, too, often uses a wheelchair.

An article in the Chicago  last week pointed out that running a Senate campaign involves lots of travel and complicated logistics, and for both candidates, that requires extra planning. From the article:

Duckworth said she and her staff have a pre-event checklist to make sure the site is up to their standards — and that means making sure even the bathrooms are wheelchair accessible.

“I don’t go to any place that isn’t accessible even though I have artificial legs that I can walk in; it’s on principle,” she said. “If someone in a wheelchair can’t get in it, I’m not going to do an event there because just because I can get in there doesn’t mean somebody else can.”

Kirk said it definitely takes longer to prepare, especially when traveling. “You always have to do really proper advance and make sure if there’s a stage [that] the railing is secure,” said his campaign manager, Kevin Artl. “You have to allocate time to arrive.”

The article said both candidates have heard from voters who question their ability to serve. “With a stroke, they wonder how much of you is ‘there,’” Kirk said. “With me, I’m all there.”

Duckworth said the question about using a wheelchair in public during the campaign came up when she first ran for Congress. “I’m not ashamed I’m in a wheelchair. I earned this wheelchair,” she said. “I’ve always insisted it’s not something that we hide.”