How Do You Define the “Best City” for People with Disabilities?

by Beth Finke

For the fourth year in a row, the consumer finance website WalletHub has named the Kansas City, Missouri, suburb of Overland Park #1 in a ranking of the best American cities for people with disabilities. San Bernadino, California came in at last place, #150.

The site says it bases its rankings on economic environment, health care, and accessibility. To help people find the best place to live and manage a disability, they review cities for everything from the number of physicians per capita to the rate of employed people with disabilities to accessibility to city parks and recreation.

Lists like these can be fun, and a ton of folks (including me) get drawn into reading them. I don’t think this one holds much value, though.

The term “people with disabilities” (PWD) is pretty broad. A PWD can be someone with age-related disabilities, a person who uses a wheelchair, a child with a developmental disability, a returning veteran with a traumatic brain injury – we all have very different needs. A very quick bit of research on Overland Park shows it has a strong public school system, (ideal if you have a child with a disability) and a weak public transportation system (difficult if you’re like me, and your disability prevents you from driving).

Chicago, where I live, ranked #7 on the list this year. Nine cities in Arizona made the list, and while people using wheelchairs wouldn’t have to deal with snow and ice in the winter there, those of us who use service dogs would have a hard time keeping them hydrated in the summer.

So for now, at least, I’m staying here in the Windy City. The availability of public transportation here lets me live more independently, the roads follow a grid system so it’s easy to know my way around without being able to see, and my Seeing Eye dog loves the cold. What can I say? It’s My Kind of Town!

How accessible is the place where you live? Let us know in the comments below!

More posts about accessibility:

• Are rallies in the United States accessible?
• How Can Museums Be More Accessible? Ask the Community.
• Tips for wheelchair-friendly train travel

Hidden Words: Emotions, Thoughts and Feelings in the Silence

by Aaron Likens

Writer’s note: I can’t stress enough that, “If you’ve met one person with autism you’ve only met one person with autism” as it applies greatly to this post as these examples are mine and mine alone. Also, to some of these situations, on any given day, the words behind the words could be different…

A teacher once asked me, “Do you need any help?”

What I said: “No.”

What I was thinking: Why did I say no? I do need help, so why did you ask instead of just helping me? I know I need help but why don’t you? I just don’t get this, these fractions make no sense and the rules for inverting or, flopping, or whatever it is when dividing, or is it multiplying, makes no sense. Please come back, help me, but if you ask again I’ll probably say no.

Many times in my life I’ve been told, “Aaron that was a good job!”

I have often responded with a hesitant, “Yeah,” and with a halfhearted, “Thanks”

What I’ve thought: Was it a good job, really? I know I could’ve done better because it wasn’t perfect. With that said, are you just telling me it was a good job or are you just telling me it to be nice because I know that’s what people do so I’m actually confused right now. If I seemed a bit stuck up after your compliment I had no intentions of seeming so, it’s just that I don’t know how to respond because I quite honestly have no idea if what I did warranted praise because I simply did what I did because it needed to be done.

In first grade he music teacher played something to show us what heavy bass felt like and I quickly rose my hand and said, “It is hurting me!” She responded with, “No it isn’t!”

What I was thinking: No it isn’t? Then what am I feeling? I can’t state that it’s hurting again because my classmates will probably laugh at me, but teacher, I’m feeling something I’ve never felt before. My legs and arms feel as if they’re on fire and I’m feeling every bit of noise. Why didn’t you believe me? Maybe someday I’ll be able to explain this, but for now I’ll just close my eyes and try and endure this onslaught of noise.

Many, many times in my life a loved one has told me, “I love you.”

My response is always the same, “…”

What I think: Oh my goodness, I’m silent again, but I do, I do love you, but I can’t say it. I don’t know why I can’t say it, but I do. In this silence is the struggle I face. For some reason expressing emotions just isn’t there but that doesn’t mean that I’m lacking in it.

Maybe it’s fear that someday I won’t hear those words; maybe it’s a fear of your reaction should I say it and this could be even more so because I haven’t said it for so long. This silence must be hard for you, I understand, and you may think you’re talking to a wall as I stare back at you in a blank stare, but I’d like to say so much but am simply unable.

I know I’m loved because you keep telling me and yet I keep responding with silence, but you must, I hope, know that I love you because you keep telling me and each time I wish I could reciprocate, but I hope you understand hidden within the silence, or the words I may sometimes say in brief, are many more emotions and thoughts than you can imagine.

I’m in here, I really am, but sometimes I just can’t tell you what I want, what I’m feeling, and that fact that I truly appreciate you and all that you are and all that you’ve done for me.

Aaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

More posts from Aaron:

• How I Feel When People Say “It’s Not That Difficult”
• Asperger’s and Employment: What I Wish I Knew Then
• How Asperger’s Syndrome is Like a Checkered Flag

Survey: Share Your Experience Using a Service Animal in Public Spaces

by Beth Finke

Last month I wrote a post here about an article in Outside magazine. In that article, journalist Wes Siler — a dog lover who does not have a disability — expressed his concern over people without disabilities faking that their dogs are service animals, and now the Southwest ADA Center wants assistance animal users to fill out an anonymous survey to learn more about our experiences accessing public places with our animals. From their press release:

“The information gathered from it will help us 1) understand what access issues people are having with their animals; and 2) to develop and improve the information, support, and guidance needed for the community to improve access for users of assistance animals.
Whether you use a service animal or other type of assistance animal, we would like to hear from you.”

I just filled out the survey myself. After confirming my eligibility for this survey on the first page, I could skip any other questions I preferred not to answer. That made the form easy to fill out. I did it with my talking computer, and it only took about ten minutes.

I hope you Easterseals blog readers who use assistance animals will fill out the survey – people need to know more about our experiences getting access to public places. Any questions about the research study? Contact Vinh Nguyen at the Southland ADA Center at vinhn@bcm.edu.

This Crucial Health Insurance Program for Kids Just Expired

by Sydney Palese

One of our focuses here at Easterseals is ensuring children of all abilities have the best possible start in life. Through our Make the First Five Count initiative, inclusive childcare and early intervention programs across the country, we’re committed to providing a solid foundation on which kids can grow and thrive. In addition to the services we provide, we’re also committed to advocating for the resources that make these programs accessible and affordable, like the Children’s Health Insurance Program (CHIP).

If you’re unfamiliar with CHIP, here is what you should know*:

• Approximately 9 million children across the United States are enrolled in CHIP, which covers children in families who are do not qualify for Medicaid;
• 370,000 pregnant women in 19 states are covered by CHIP;
• CHIP includes immunizations, check-ups, dental coverage, mental health, and substance abuse services;
• CHIP was first passed in 1997 with sweeping bipartisan support.

So why are we talking about CHIP now? Because on September 30, 2017, federal funding for CHIP expired.

The implications of this expiration are potentially devastating to millions of families.

In a statement issued by leading child health and advocacy organizations, experts warned: “By not acting in a timely manner to extend CHIP funding, Congress has caused [families who rely on CHIP] to face the threat of losing coverage altogether. Moreover, the patchwork of state funding deadlines means that a child’s or pregnant woman’s access to continued CHIP coverage will depend on his or her ZIP code.”

Families across the United States, including many we serve, are facing uncertainty as a result of CHIP’s expiration.

Right now, we need your help to make it loud and clear to Congress that they must extend CHIP through the bipartisan legislation that is part of CHIP’s fabric. Here is how to join the cause:

1. Use the hashtag #ExtendChip to reach out to your U.S. Senators and U.S. Representatives, OR tweet out THIS message:
   
2. Contact Your Members of Congress
   Use our action alert to automatically email your representatives.

Let us know your thoughts about CHIP’s expiration in the comments below.

*Thanks to the American Academy of Pediatrics for their advocacy, talking points, and resources regarding CHIP.

How I Feel When People Say “It’s Not That Difficult”

by Aaron Likens

In my life there has been one constant that’s been worse than any other event: When someone says, “But Aaron, it’s not that difficult!” When those words are uttered I’m devastated.

Here’s why they hurt: Do you think I’m not aware that it’s easy for others? Do you think I want things that come easy for others to be difficult for myself? I’m a hard enough critic of myself as is but when others point it out and then think I can simply use willpower to make what is difficult easy is, well, damaging.

Do I want things to be easy? Of course I do. I don’t want to create confusion as to why I can do some things great and many things not as well. It has to be confusing as to why there can be this great chasm between being great and simply not being able to do it no matter how hard I try, but when another person uses a tone and those words of telling me that it shouldn’t be difficult, well, to be perfectly honest it creates a storm of self-hatred.

I know certain things are difficult and I know when these things occur I often retreat. I don’t know how others socialize so well, and at social functions I look at the world in utter awe and wonder, “How do these people do it?” They make the impossible seem so easy and I have such a hard enough time talking to people I know.

Now, for those that know me, they won’t think twice about it, but if someone didn’t and saw me, and let’s say they’ve seen me present, they would be confused because there’s a person that has great speaking ability appearing socially paralyzed so why is it so difficult?

I get it, I understand the confusion others must face when encountering Asperger’s and maybe a select few will think that by saying, “it’s not that difficult” they are offering the best form of motivation possible. However, this isn’t the case and the seeds of self-loathing are planted.

There’s a fine line between encouraging words and words that can do harm and telling me what is and isn’t difficult doesn’t help me one bit.

So, what would I say to people who tell me “It’s not that difficult”?

I’d begin with the difficulty of trying to filter everything out in a room be it the noise of the electronics, the voices from other rooms, the noises outside, and the potential hum of the lights. I’d talk about the anxiety walking into a building and wondering if that person, or that person, would stop and talk to me. What would they say? How would I respond? How long would we talk? I’d tell them I’d analyze every potential encounter whether it occurred or not, and then stress as I passed them on whether I should’ve said hello only to redo the whole process once I passed the next person.

I’d talk about the fear of eye contact, the draining nature of experiencing positional warfare, and the constant fear of being a nuisance to anyone and everyone because that’s how I often see myself.

So, you can tell me certain things shouldn’t be difficult but I only wish you could walk a day in my shoes.

Of course, to some, this is simply an overreaction, right? Words shouldn’t hurt, right? It shouldn’t be that difficult, right?

If only they knew how many thoughts and tears have been created by that sentence and for anyone reading this I want to say you’re not alone in the frustration of being told something should be easy when it isn’t. Would it be wrong for me to say that, for those that use that sentence, it shouldn’t be that difficult to understand how much heartache is caused by those words?

Aaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.</em

Asperger’s and Employment: What I Wish I Knew Then

by Aaron Likens

Employment and having a disability (I have Asperger’s syndrome) can be a tricky combination. It can be even more difficult to navigate when one doesn’t know they are on the autism spectrum. I navigated my first several jobs not knowing (I was diagnosed at age 20).

With that said here are five things I wish I knew about having a job then that I know now.

1. Chain of command.

At every job I had I didn’t understand that there was a chain of command. When I worked at the video game store I emailed corporate through the chain’s internal network. Well, I actually emailed the CEO fearlessly not knowing I was out of place. However, they listened and changed a policy! I was also told not to email them again.

2. Small talk.

When I worked at the bowling alley and then the video game store I didn’t understand why my coworkers would try and chit chat about things I deemed irrelevant. Actually, I took this as a sign of the utmost disrespect because I thought, “How dare they talk to me about such things because I’m at work to work.” This isn’t to say that a person should go to work to talk, but I didn’t understand that they were trying to be my friend by talking to me about non-work related topics.

3. It’s okay to ask for help.

I worked at a racing shop as the office manager and the owner would often give me a long list of things to do such as, “Go into the shop, find this item and that item, then put them in a box, and mail them to so and so at their alternate address.” I didn’t realize I have some auditory processing delays and that anything after the first directive became lost on me. But did I write this down? No, I didn’t and I would always have to go back and ask again, and again. This angered him, but I could’ve helped myself by asking for help before I went searching by asking him to write it down instead of trying to do it without assistance.

4. If possible, find a job that is in an area of interest.

This is critical, but can’t always be done. However, if it can be, motivation is going to be higher. My second job was at a video duplicator (remember VHS tapes?) that saw me load 85 VHS tapes into VCRs, wait an hour, take those tapes out, label them, box them, ship them, repeat eight times a day. I will say I loved the routine of it and I got highly efficient at it, but it wasn’t something that I had interest in. This isn’t to say every job is going to be enjoyable, but if one is looking for a career long term then if it’s in an area of high interest the chances of burnout will decrease. The video duplicator job lasted no more than four months.

5. Team effort.

My hobby job now is that I am the flagman for two national racing series. When I first landed these jobs I was quiet about my diagnosis because I didn’t want them to think less of me. It was kind of hard to hide and when I opened up I let them know my strengths and my weaknesses. It was the best thing I’ve done because as we grow the amount of awareness and understanding out there, people are going to be more accommodating and understanding. I’m no longer put into situations that I can’t do and am instead put into areas where my strengths show. I know not every place of employment is going to be that way, but as they become so I hope the strengths of us all will have the ability to shine much, much brighter.

Aaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easterseals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

50 Years After Its Debut, A Blind Actor is Cast In ‘Wait Until Dark’

by Beth Finke

c/o The Original Theatre Company

When Chicago’s Court Theater produced Wait Until Dark on stage in 2008, they asked me to be a technical consultant. Nine years later, progress! For the first time ever, a blind actress is playing the leading role.

Wait Until Dark was written for the stage but is better known for the 1967 film version. Audrey Hepburn played the lead role: a newly-blind woman alone at home who is terrified when a psychopath breaks into her apartment.

I loved being a tech consultant, but when I bragged about the actress playing the Audrey Hepburn character coming over to watch how I move around our apartment, or when I shared some of the questions handsome actors (why picture them otherwise?) had been asking me on the set, my friends would inevitably ask, “So why don’t they just have you play the part?”

The easy answer was that I am not an actor and don’t know a thing about acting. The more complicated answer was that back then, even if I’d studied acting, I wouldn’t have been considered: actors with disabilities were not getting many roles on stage or in Hollywood nine years ago.

But that’s beginning to change. last year I wrote two posts about actors with disabilities scoring major parts:

• Michael Thornton rolled onto the stage in his wheelchair to play the lead role in a Chicago production of Shakespeare’s Richard III at Steppenwolf Theatre, and
• Micah Fowler, a young actor with cerebral palsy was cast as a character with CP on the TV comedy Speechless.

The CEO here at Easterseals had an article in The Huffington Post last year, too, touting A&E’s Born This Way (a show chronicling the lives of young adults with Down syndrome) after it received an Emmy for best unscripted reality television series. And then there’s four-foot-five actor Peter Dinklage. A star on HBO’s Game of Thrones, the accomplished actor won an Emmy for his role as Tyrion Lannister.

Fast forward to today. Actor Mickey Rowe is one of the first actors with autism to play a character with autism on a major professional stage: he’s playing the lead role in the Tony award-winning play Curious Incident of the Dog in the Night-Time at the Indiana Repertory Theatre before it opens at New York’s Syracuse Stage October 25.

And yes, finally, nine years after my debut as tech consultant, for the first time ever, an actress who is blind has debuted as the lead in Wait Until Dark — British actress Karina Jones lost her sight as a young teenager.

I got in touch with Karina after she landed the Audrey Hepburn role, and she shared a link to an interview acknowledging her surprise at learning she’s a first. “It’s 2017 and yet I am the first blind actress to take the role of a blind person in a play that has been around since the 60s. Why?” More from the interview:

“Producers and directors should give disabled roles to disabled actors. A blind person wouldn’t be auditioned for, say, Desdemona – we’re not there yet – but with roles that are written as disabled or impaired I think it is only fair that they should be played by disabled actors. In this play I’ve totally got an advantage [over a sighted actress] because I’ve got a lot of shorthand. I’ve got a head start because I have real insight into the character. Playing this part is, for me, an amazing thing; a real push forward for equality. It’s brilliant.”

The play opened at Devonshire Park Theatre in Eastbourne on August 24, 2017 and has been touring ever since. The show opens in Exeter next week and continues its UK tour until December. For tickets and more information, visit www.waituntildark.co.uk.

More posts like this one: 

• Where Were the Actors with Disabilities at the Oscars?
• What Would a Mandate on Audio Description Mean for Theaters?
• A special way to experience live theater when you’re blind like me

A Blind Art Teacher Instills Creativity, Confidence in Her Students

by Beth Finke

Art teacher Jessica Jones working with one of her students.

Lavelle School for the Blind in New York contacted us this past summer about their gardening program for kids with visual impairments. Horticulture therapy programs for students who are blind or have other disabilities are popping up all over the country, and while Lavelle’s gardening program is terrific, I’ve heard of gardening programs like theirs before. What I’d never heard of is someone teaching art to blind students…who is blind herself.

Jessica Jones lost her sight at age 37 due to complications of Type 1 diabetes. Before then she’d been employed by New York City’s Department of Education teaching art in the schools, and she was determined to continue that career after she lost her vision.

“It never even occurred to me that I wouldn’t be able to go back into the public school classroom and teach art,” Jessica told me during a phone interview. “But when I actually was out there interviewing I was shocked at how difficult it was; I was utterly shocked. But did I ever think I couldn’t do it? No.”

Difficult as it was, Jessica persevered and eventually landed her job at Lavelle, a public-private school in The Bronx. These notes from our phone interview help explain how she teaches art to the 100+ students with blindness and other disabilities who are enrolled there:

Jessica: I do just about everything that you can imagine. I’ll start at the top of the list and when you get tired just tell me. We do a lot of painting, I will always have some sort of tactile element involved if the child requires it, or if they want to go back and feel what they’ve done. There are always the obvious things like sand or lentils, and there’s also Ms. Jessica’s Magic Paint, which is plain old tempera paint that has school glue and shaving cream added to it. So it gives you a really raised surface to feel.

One of Jones’s students

Beth: What other tactile stuff do you do? Mosaics, sculptures, clay?

Jessica: We do a lot of print making. Cardboard is an art teacher’s best friend, and the kids make their own printing plates out of cardboard. I’ll give them a two-foot square of cardboard and then if they have the ability to cut out their own shapes they do so and glue those down where they’re composing their image. If they’re not able to, I give them pre-cut shapes and they’ll glue those down where they want. And then, just like print makers do with linoleum, you apply the ink that has been mixed with sand to the surface of this cardboard printing plate with a brayer, put your paper on top and you rub, rub, rub. Pull it off and you have a captive print.

Beth: Sounds like fun! Is printmaking one of their favorites?

Jessica: I honestly have to say, the primary love among my kids is sculpture. I have a lot of kids who have really taken to sculpture both figurative and abstract. They use things out of the recycle bins. I’m always pushing kids to recycle because I believe in recycling. I tell the other teachers all that stuff you’d send to the Salvation Army, put it in the art room. I’ll find a way to use it!

Beth: What thing do you like best about your job?

Jessica: Oh gosh, what is the best part? I think the best part is probably seeing the light go on. You know, I’ve been teaching at the same school now for 11 years. There are some kids that I’ve been with since they were three and a half years old, and it may take them that long to get something as simple as folding a piece of paper, but once they do it, and they do it all by themselves, they’re just so absolutely pleased with themselves. “I get it… now I get what she’s been trying to get me to learn for so many years, and I hated her for trying to get me to learn it, but now I get it”. That’s what I love, is seeing their lightbulb go on over their heads.

Beth: Can you share a specific example of a lightbulb moment?

Art created by Jones’s students.

Jessica: I’ll give you an example where it happened for all of my students at once. We put on our second annual Lavelle school art show in April of this year and people came from all over to see it. Friends of mine that work in museums, people from the community, people from the State Commission for the Blind, people from the Department of Education, newscasters and newspapers. The first year the kids were absolutely thrilled to get all that recognition, but this year I noticed something different. They stepped up the work they were doing for this year’s exhibit.

They recognized they were bringing their abilities to the community at large, not just mom and dad. Not that mom and dad are not important because goodness knows, they are. But the children, this year they stepped up the work they were doing to be a part of the community at large — which a lot of time they are not. It wasn’t just about the attention anymore, it was more about being an artist. “I’m not just a student, I’m an artist, and I have something to contribute to the community at large, that you might not think I have the ability to contribute.”

Easterseals offers art therapy programs for children and adults with disabilities at select locations across the United States. Find your local Easterseals for more information.

How Asperger’s Syndrome is Like a Checkered Flag

by Aaron Likens

Today’s blog is going to use the most traditional of all things in Motorsport, the checkered flag, as a concept to describe Asperger’s.

The thing about the checkered flag is that it’s so contradictory. In the top corner is one color and if you go just far enough you’ll reach another, but then keep going and you’ll be back to where you started and so on and so forth. What does this mean? My experience in having Asperger’s is one of stark contrasts and it gets tiring. Here’s what I mean…

I want to be part of the social world but the social word tires me.

I want to be part of a team but I often can’t see the concept of teamwork.

I have extremely good sense, especially when it comes to hearing, but I often wish I could turn it off.

I want to be alone but being alone is extremely isolating.

I need to be perfect in things that I do but there is no satisfaction at achieving perfection.

I can give some incredibly witty remarks but often miss out on when someone is being witty.

I want to make sense of the world but often the more I know about things the scarier the world is.

Being in my Kansas is awesome but I often wonder what life is like out there.

I yearn to be normal but normal seems so boring.

I can do some things great and many things not so great.

Hard things come easy and what is easy to most comes at a high degree of difficulty to myself.

I want to care about others but allowing myself to feel is overwhelming.

I want to tell others what they mean to me but expressions of any kind are paralyzing.

Do you get the idea by now? It’s a constant struggle to be wanting both sides of the coin; to want something but to know if I had it the results would be just as difficult as living without it. Living with Asperger’s, at least for me, is living a life full of contradictions.

Aaron Likens, author of Finding Kansas: Decoding the enigma of Asperger’s Syndrome, and the National Autism Ambassador for Easter Seals, has spoken to over 80,000 people at over 900 presentations and has given to the world a revelation of how the Autism Spectrum Disorder mind works. His willingness to expose his inner most thoughts and feelings has unveiled the mystery the Asperger’s mind. Join him on his journey from hopelessness to hope.

Your Legislators Need to Hear From You

by Beth Finke

The Senate Finance Committee is meeting this Monday, September 25 for a hearing on the Graham-Cassidy Amendment (the one that proposes to repeal the Affordable Care Act). The Congressional Budget Office Score will likely be published Monday night as well and be narrow in focus.

We probably won’t see much of anything there on Medicaid, but since the Medicaid provisions are similar to those on past House and Senate bills, we are pretty certain of the negative impact they’ll have on people who have disabilities.

If you’re feeling anything like I am, you’re thinking this is all painfully familiar. Didn’t we do this already? Don’t our legislators already know how we feel? Do I have to contact them again?

Yes. We do. Now more than ever.

So here’s something you can do Right now. Send a comment to the Senate Finance Committee at GCHcomments@finance.senate.gov and be sure to cc your senator on that message as well. Tell them this bill is harmful to people with disabilities.

If you want more information, you can link to our Easterseals Action Alert. Sharing a personal story about yourself or someone you love who has a disability can be especially effective. Send a photo along. A video. Let them know who you are. And how you feel.