Ah, the questions kids ask

by Beth Finke

Last Friday I took the morning off and took a train with my Seeing Eye dog Whitney to Deerfield, a suburb of Chicago, to talk with second graders at Kipling Elementary School. The kids asked a lot of questions during the Q&A part of the presentation, and I thought you’d enjoy hearing some examples:

• Does Whitney like other dogs?
• How do you know when it’s time to go to bed?
• How do you bake bread?
• How do you write books?
• How do you drive?
• If dogs are color blind, can they see any colors?
• Does Whitney ever slip on the ice?
• Where did you go to college?
• What’s Whitney’s favorite color?

All great questions, many of them sparking some very thoughtful conversation. My favorite question of the day, hands down, was this one: “If you need to go to school to get a Seeing Eye dog, but you don’t have a Seeing Eye dog yet, how do you get to the school?”Whitney and I are taking this morning off, too, to take a train to a school in another Chicago suburb: Sears Elementary, in Kenilworth. This time we’ll be talking with kindergartners. Just imagine the questions they’ll be asking…!

Rewriting images of people with disabilities

by Beth Finke

Back in 2010, I was asked to perform in a cabaret show that a Chicago disability organization called Access Living was putting on. The majority of people on staff at Access Living have disabilities, most of their board members have disabilities, and every single person in that 2010 cabaret show had a disability. I read an excerpt from my memoir Long Time, No See, and the other talented folks on stage sang, danced, played music, performed skits and did comedy acts.

One of the highlights of that evening for me was being introduced to disability rights advocate Susan Nussbaum, the emcee for the evening. Susan was still working at Access Living back then, but she’d also started doing some writing. Before the show she and I had a chance to share ideas and compare stories about our writing lives, and two short years later, in 2012, her first novel Good Kings Bad Kings was published.

Susan was in a bad car accident in the 1970s and has been using a wheelchair ever since. She told me that while she was recuperating from that accident, she’d tried to think of characters with disabilities in books she’d read, thinking those characters might give her some examples of how to live her new life. In the end, she discovered that characters with disabilities in literature were over-the-top inspirational, super-heroic, or terribly bitter. And so, she decided to write a novel of her own with characters who have disabilities and were human, too.

Good Kings Bad Kings takes place in a fictional Chicago center for young people with physical and mental disabilities. It tells their stories from multiple points of view: not only those of residents, but also those of workers.

You can imagine what a treat it was to switch on the radio on Christmas Eve last month and catch Susan Nussbaum being interviewed on NPR’s Here & Now. In the interview, Susan said the images from those books she read shortly after her accident made her feel as if she should be ashamed that she’d have to do things differently now. “I wanted to see characters that were different than anything that I was able to see anywhere else, disabled characters that were recognizable as human beings.”

I especially liked the way she emphasized that most of us with disabilities really don’t think about our disability as often as average people think we do. That’s why the characters in Good Kings Bad Kings don’t think about their disabilities, either—Susan only mentions a character’s disability when she needs to do it for a bit of exposition.

Susan Nussbaum says the reason you don’t see more authenticity in the way disabled characters are represented culturally is that there are too few fiction writers with disabilities. Good Kings Bad Kings won the 2012 Pen/Bellweather Prize for Socially Engaged Fiction, and it was recently released in paperback. I’m hoping Susan Nussbaum’s success with Good Kings Bad Kings will encourage more people with disabilities to give writing a try.

How guide dogs weather the storm

by Beth Finke

The cold and snowy weather last week had a lot of people asking me if my seeing eye dog Whitney likes being out in winter weather. Truth is, she doesn’t have much choice. Poor guide dogs, they never get a day off work!

The snow started falling in Chicago last week, and it was still coming down days later. The American Federation of the Blind devotes a section on its web site to traveling in winter weather:

Winter weather is often more time consuming, more physically and mentally tiring, and possibly more fraught with danger than traveling in good weather. The cold often brings personal discomfort, making it difficult to concentrate and learn during travel or mobility lessons. Your toes, fingers and ears are particularly at risk. To protect your extremities, it is necessary to plan one’s clothing and equipment well beforehand.

When I was a kid, I thought it was magical the way snowfall muffled the sound around you. I still do. But on my walks with Whitney the past week, it just wasn’t the magic I was looking for.

Enough snow fell to mask the audible cues I use to navigate the city. Commuters who could see trudged through the Loop (downtown Chicago’s business district) with their heads down to avoid the snow pelting their faces. This would have been fine if they all had dogs like mine to guide them, but they didn’t. Whitney was on her own, weaving me around the blinded commuters in our path.

And that wasn’t all: snow accumulated between the raised, circular bumps I’ve come to rely on to tell me we’re at the edge of a curb ramp, so I wasn’t always exactly sure where we were. The further we got away from the Loop, the fewer pedestrians crossed our path. I’d stop. Listen. No footsteps in the snow, no sounds of shovels, nobody there. Panic. Where were we?

All I can do when this happens is take a deep breath and remember what trainers drummed into our heads when my blind peers and I were first learning to work with our guides: trust your dog. “Whitney, forward!” I hold on tight to her harness, follow her lead, and before long we’re at our destination, safe and sound.

As the snow begins to melt now, salt on the streets is the problem—it gets into Whitney’s paws, and stings. Thank goodness for booties. Whitney’s gotten used to wearing them now, and I’m getting used to compliments, too. Strangers on city streets gush when we pass by. “Awww! Look!” they exclaim. “That dog has shoes!” It makes me smile, and I picture those strangers smiling in the snow too. My dog is more than a guide, she’s a therapy dog, too. “Good dog, Whitney!”

Disability rights treaty is stuck—let’s get it moving!

by Jennifer Dexter

For the past several years, Easter Seals and disability advocates have been working on the UN Convention on the Rights of Persons with Disabilities (CRPD). This treaty will not only benefit people outside of the United States, but will ensure that US travelers with disabilities can live, learn and work throughout the world. The President signed the treaty in 2009. The critical next step is for the U.S. Senate to vote to ratify it.

The last time the Senate voted, the CRPD had bipartisan support but fell just 6 votes shy of passage. Late last year, momentum for the treaty seemed to be building in our favor. Then right before the holidays, Senator Bob Corker (R-Tenn), the ranking member on the key Senate Committee, stopped negotiations with Chairman Senator Bob Menendez (D-NJ). What a disappointment.

Easter Seals wants to see the treaty approved, and to do that, we need Senator Corker to come back to the table and work to that end. People with disabilities deserve this treaty to be approved. Please take a minute and weigh in with your Senator: tell them to approve the treaty.
Thanks.

Resolve to volunteer this year

by Beth Finke

I am so pleased to have Amy Richmond back as a guest blogger today. Amy is a member of the Easter Seals National Associate Board (NAB), and she wrote a guest post here last year about running in the Ragnar Relay to raise $3,000 for Easter Seals.

You don’t have to give up a thing

by Amy Richmond

Welcome to 2014! Many of us have resolved to make ourselves better people this year. We’re going to eat less, give up a bad habit, make time to exercise. All are worthwhile pursuits. And we’re sure that we’re going to feel fulfilled at the end of our sacrificial journey once we fit into those skinny jeans, or run the marathon, or give up that mid-afternoon cookie break (even though we look forward to it all day and it just seems to make everything seem better, if only for a moment).

This year, in addition to the resolutions you make, why not think about the areas where you excel in addition to those areas that need improvement? Think about how you could use those skills to better the life of another person. If you choose to add something positive to your life this year rather than changing a negative, you could make an immediate and long-lasting impact on your community.

As a member of the Easter Seals National Associate Board, I have the opportunity to share my time and talents with a world-class organization that impacts the lives of millions. I have the privilege of spreading the word about Easter Seals’ life-changing programs for veterans, people with autism, individuals with disabilities, seniors and kids. I’ve been able to meet service recipients and their families and hear about the ways that Easter Seals has made a dramatic impact on their lives. I get to work with the amazing people at Easter Seals who make it all happen, and the dedicated volunteers who strive to make a difference.

You don’t have to devote a lot of time to make an impact. And unlike those first trips to the gym, volunteering feels great from the start. Please consider donating your time to Easter Seals this year. It’s a tremendously rewarding experience that doesn’t require you to give up a thing. Happy New Year!

Keeping the mind in shape with memoir-writing

by Beth Finke

In addition to my job moderating this blog for Easter Seals Headquarters, I also lead three different memoir-writing classes every week for senior citizens here in Chicago. Mary Leary’s guest post last Friday served as a reminder of how much getting memories down on paper can help seniors with brain health, too.

Writers in those classes tell me that writing a story down on paper for class each week keeps their brains working. Sitting down to write provides a person with time to think, and then to search their brain for just the right word. If that fails, searching through the dictionary can solve the quandary and expose writers to new words, too. Writing a story down on paper makes it feel more official, and because I have every writer read their story out loud in class, they think hard about what they write.

Writers in my classes tell me how important they think it is for them to stay active, both in body and in mind. One writer said she thinks about her brain as a muscle. She tells me, “The more you use your brain, the stronger it gets!”

My memoir-writing classes took a break over the holidays, but one of them starts up again this afternoon, January 6. In addition to giving them a new writing assignment, I’ll be giving them information about how Easter Seals has teamed up with Posit Science to start a special Train Your Brain program. Writers in that class are a curious bunch—I know they’ll want to learn more about the brain training exercises there, and they’ll want to read about the new initiatives around brain health on the Easter Seals Brain Health Center webpage. After all, as one expert says, “The more you use your brain, the stronger it gets!”

One thing to do right now to keep your brain healthy

by Beth Finke

I am pleased to introduce Mary A. Leary, PhD, vice president of Easter Seals Business Innovation & Advancement and its  Transportation Group, as a guest blogger today.

Train Your Brain

by Mary Leary

Brain health is pretty important to me. Not just because I work at Easter Seals, but especially because of things I’ve witnessed in my own family.

Thirteen years ago I was working in the information technology industry and feeling helpless as I witnessed my father and grandmother struggle with dementia. Dad had been a successful social entrepreneur who launched schools for children with learning disabilities way before the field of special education came into being. My mother’s mother was the quintessential southern grandma: pound cake, chicken oyster gumbo and shrimp Creole was always waiting when we visited her in Florida. My father sustained a traumatic brain injury from an accident, and I watched as it slowly changed his—and my mother’s—life. In the meantime, my grandmother’s steadily increasing dementia made it impossible for her to stay living on her own. Observing these events unfolding before my eyes motivated me to change my career. I wanted to find ways to make a difference, especially for people who struggle with brain health issues. I decided to get into the field of aging services, and I am now a gerontologist, driving our work in brain health here at Easter Seals.

This journey is one I am finding more amazing each and every day. New and emerging products can help people who have sustained injuries or who have a neuro-cognitive condition like dementia, but that’s not all: people who are fit and well can do things today to maintain and improve their brain, too.

The proven science behind brain fitness is why Easter Seals has teamed up with our friends at Posit Science to start a special Train Your Brain program. We launched the Train Your Brain program online last year along with the Easter Seals Brain Health Center to give folks a chance to learn about brain training exercises they can do in the comfort of their own home or office.

Train Your Brain was such a success that we are continuing it into 2014 with many new features, including courses that target specific exercises for specific goals or conditions and a new navigation improvement exercise. Over the next six months, Easter Seals will be launching a number of new initiatives around brain health with new partners and refreshing information on our Brain Health Center webpage, but you can get started training your brain right now: our special offer and relationship with Posit Science makes it easy for you to try some of these exercises out for free. After that, sign up for a subscription and you’ll be continuing the spirit of giving: for every gift subscription you buy now (only $96 for a year subscription) Posit Science will contribute $20 to Easter Seals. Not only that, but Posit Science will also provide a general access license for Easter Seals to provide to a soldier or veteran in its programs supporting those injured in service to our nation. Take advantage of this offer and start your Brain Training New Year’s Resolution now.

Can I bring my talking watch through airport security?

by Beth Finke

Reading Ben Trockman’s post last week about what it’s like to get through the airport in a wheelchair got me wondering. If you have a disability, and you’re traveling by plane, then how do you know what assistive devices you’re allowed to bring through security?

Turns out the Transportation Security Administration (TSA) offers a “Can I bring my … through the security checkpoint?” feature where you can type in names of items to learn what you can and can’t take through security when you fly. The results let you know if the item can be carried-on, put in checked baggage, or if it’s not allowed for plane travel at all.

I am blind and travel with my Seeing Eye dog Whitney, so I might type in stuff like “metal dog food bowl,” and “Braille slate and stylus” to see if I can carry them through the checkpoint or whether I have to check them in a bag. For now, let’s try “folded white cane.”

Okay, here’s what came up :

Some mobility aids may require specialized screening. To expedite your travel, notify the Transportation Security Officer of your need for special assistance at the beginning of the checkpoint screening process. At any time during the screening process, you may ask for a private screening area.

The response went on to say that even if an item is generally permitted, it may be subject to additional screening. In the end it might not be allowed through the checkpoint anyway if it “triggers an alarm during the screening process, appears to have been tampered with, or poses other security concerns.” The site said the final decision on whether to allow any items on the plane rests with TSA and suggests you notify the security officer of your medical condition or need for special assistance at the beginning of the checkpoint process.

The TSA Contact Center (TCC) recently extended its hours, and representatives are now available Monday to Friday, 8:00 a.m. to 11:00 p.m. Eastern time, and weekends and federal holidays, 9:00 a.m. to 8:00 p.m. Eastern time. The TSA encourages passengers to contact them with any questions ahead of time, and seems to me that’s the way to go. The TCC hotline is 1-866-289-9673, and in addition to asking questions about your upcoming travel there, you can also ask them about TSA procedures, provide feedback or voice your concerns there.

Products, profits and Autism Spectrum Disorder

by Patricia Wright

The internet is rife with advertisements for products that claim to help people with Autism Spectrum Disorder (ASD) or to cure ASD or benefit people living with autism and on and on and on. Most of these products have no evidence whatsoever that they actually produce results, yet many families and individuals with ASD purchase these products in hopes of positive outcomes.

With the growing prevalence of autism, there is clearly a growing market for products. Sometimes, unfortunately, the motive for producing these products is purely profit versus what it should be: profit WITH positive outcomes. Families are taken advantage of every day, purchasing ineffective products with precious financial resources that could be spent on effective therapeutic interventions.

Research is required to assess intervention effectiveness. Research takes time. Research costs money. The decision over whether to engage in rigorous research before releasing a product for sale can be a difficult one for a product developer when they know families and people living with ASD will buy the products regardless of proof of effectiveness, but over the past two years I have met two product developers who are interested in what I call “doing it right.” Seth Walter of the Hali Center for Autism and Brian Mullen of Vayu both engage in research BEFORE releasing their product for sale. Sure, they could put their products on the market early and probably make some money, but they decided the right thing to do is research their products first to determine if they are effective.

I admire both Seth Walter and Brian Mullen. These two men have spent years pursuing research dollars and research partners simply because they want to do the right thing. They’ve both developed products they believe in, but they’ve come to the correct conclusion that belief needs to be backed-up by evidence.

I wish all product developers had this desire for evidence. The research on Seth and Brian’s products is currently being conducted, and effectiveness is being assessed. Given positive outcomes, ASD treatment may have two additional tools available for implementation.

Oh, and P.S.: Check out Brian Mullen’s recent TEDx lecture, where he passionately describes why more engineers need to be engaged in mental health treatment.

Flying with a wheelchair

by Ben Trockman

There you are, impatiently waiting in line for security to roam through your bags and scan your entire body, when all you want to do is board the next airplane to Chicago and make it home for the holidays. Most people haven’t thought of how a person with a disability travels, but this infographic created by Easter Seals will give you a good idea of the difficulties during airline travel.

Time is one of the most valuable commodities in a person’s life. We all want our everyday routines and activities to run as smoothly and efficiently as possible, and this goes for airline travel as well. By taking a few moments to look at the infographic, you can see just how much extra time it takes for a person with a disability to travel via the airlines. You can put yourself in my shoes for a moment, too, just by reading through this list:

• Check-in and security: As a C3 quadriplegic, and a man who uses a wheelchair to get around, I have to arrive at least an hour earlier than most to get all my things checked in for the flight. Not only do I have to check in my normal luggage, filled with clothes and a few extra beach towels, depending on the destination, I also have to check in all the medical equipment I need when traveling: a lift to help get me in and out of bed, an extra ventilator, and multiple pieces of other specialized equipment.
• Boarding the plane: Currently there is no set procedure allowing someone who uses a wheelchair to conveniently roll into the plane and strap themselves down. We have to be transferred out of our own customized wheelchairs to board the plane. A “lift team” raises me from my own chair to what they call an aisle chair. An aisle chair is no larger than a child’s play stool, and I am six feet two inches tall, I weigh 225 pounds, and I cannot breathe on my own. Needless to say, this transfer is never easy.
• Finding a seat: After the transfer to the aisle chair, they roll me to my seat on the plane and they repeat the “lift” process, wrapping their arms around me, lifting me up, and placing me in my airline seat.
• Landing: Hooray! We’ve made it safely to our destination. Oh yeah, then I remember. Once everyone else has disembarked, We have to do this “lift” thing all over again to get me back in that undersized aisle chair.
• Baggage claim: During flights, my $40,000 customized wheelchair is stowed beneath the plane with all the other baggage. So as I balance on the aisle chair and am rolled away from the gate past the conveniently-placed escalators to find the out-of-the-way elevators, I worry that my own wheelchair might be bent, broken or not in working order when we find it at baggage claim. If we find it there, that is. Imagine if my chair is damaged and I have nothing to transfer back into. It’d be like finding your car with no wheels. I wouldn’t be on time for my next scheduled flight, and, most importantly, I would have no form of personal transportation.

I don’t mean for this blog post to be a complaint about the procedures in place for individuals using wheelchairs at airports. I’m using this post as an opportunity to inform the public of the necessity for a change. I have created an Accessible Airline’s Proposal and an Accessible Airline’s Petition which I encourage you to read and sign! The purpose of each document is to improve accessibility for individuals in wheelchairs, like myself, who challenge the current barriers of airline transportation, and are advocating for a change to make travel easier and more accessible. After reading this post, I can only hope that next time you are traveling, you might think twice about how “difficult” your experience has been, and remember there are others out there who sometimes struggle just to physically make it to their seat on an airplane. Bon voyage!