What’s it feel like to have Autism Spectrum Disorder as an adult?

I am pleased to introduce Aaron Likens as a guest blogger today. Aaron was diagnosed with Asperger’s Syndrome (now Autism Spectrum Disorder) at age 20 and is now the Autism Ambassador for Easter Seals Midwest. This guest post was originally published on Aaron’s personal blog, Life on the Other Side of the Wall.

The island problem

by Aaron Likens

Aaron LikensI’m sure at some point in time I’m made a metaphor or two involving an island and, once again, I’m coming up with yet another island metaphor. It’s going to get difficult to remember all these islands I’m creating….

In the midst of this period of feeling down I’ve done a lot of thinking, too much probably, but I’ve noticed an unique pattern that I can only explain using an island as an example. I don’t know about others with Asperger’s, but for myself I feel like I’m on an island. I used to say a deserted island but I have come to learn that this island actually has two bridges connected to two mainlands.

These two mainlands represent two different worlds. On the bridge leading to the right we have normal. Now remember I don’t believe anyone is normal, however wanting to be more normal is something I feel and there is an illusion of normal, all of which are on that island.

As we turn to the left and see that bridge, it leads to a place that is rather uninhabited. It’s a place that often times I feel I want to be and herein lies the problem; both mainlands don’t feel right and I spend my time on the island in the middle always thinking that the place I came from isn’t as good as what lies on the other side of the bridge.

This island in the middle is a place of deep thought. When I spend too much time in the land of normal I get tired with the constant conversing, socializing, and random encounters so I look across the sea and think back to the mainland that is empty and yearn for it. I mean, how great is it to go through life without interactions? When I’ve spent too much time on the land of normal this is how I feel.

When I get frazzled from normal, or not fitting in within the land of normal, I make the trek across the bridge and get to the island where I quickly cross the second bridge to the land of emptiness where I am sure I will find happiness. Each time though the happiness is fleeting and I look back across the bridges from which I came and think about how great it would be to be a part of the land of normal.

After a while this journey across the bridges gets tiring and this island in the middle feels like home. I’m not on either land and yet I’m a part of both. It becomes difficult to decide if staying on the island is the surest bet or if I want to venture out into the world of normal.

When I think about how great the land of emptiness would be I think about how much I would have missed had I stayed there. I certainly wouldn’t be presenting, I wouldn’t have met such wonderful people within the SKUSA and USAC series, and my life wouldn’t extend much outside the walls of my house.

However, when I get exhausted, when life gets overwhelming, or when a major social disaster happens I think about how safe the other place would be. Hence why there is this island problem and staying on the island often times isn’t so much a choice rather a necessity.

This metaphor has been made in so many different ways, but as I was thinking last night about a new way to present it. I came up with this and I could visually see this island in the middle and it felt perfect, and writing this — I hope I did a good job of writing it because it sure made sense as I thought about it — has just confirmed just how apt this is.

For others I’m sure it is different but for myself this is the best way I can describe to you the feelings that go through my body and how I see the way my life is.

 

A great way one school recognized Disability Employment Awareness Month

An elementary school in the Chicago suburbs celebrates Disability Employment Awareness Month every year by asking people with disabilities to come talk about their jobs. Last week my Seeing Eye dog and I went to Wilmot Elementary to talk about my job moderating the blog here at Easter Seals Headquarters, and the kids there had already enjoyed a special guest before Whitney and I showed up. Melissa Stockwell, a three-time Paratriathlon World Champion and decorated U.S. Army veteran, had been at Wilmot the day before us.

Melissa was serving in Baghdad in 2004 when a roadside bomb hit the HUMVEE she was traveling in, resulting in the amputation of her left leg above the knee. She was the first female to lose a limb in active combat, and four years later, she was the first Iraqi War veteran to qualify for the Paralympics: she represented the United States on the swim team.

After Beijing, Melissa took to triathlons. She is currently a three-time World Champion, and when she isn’t running, swimming or bicycling, she works as a certified prosthetist at Scheck and Siress Prosthetics in Chicago, fitting people who have had amputations with artificial limbs.

Whit's always up for a class visit.

Whit’s always up for a class visit.

When my talks at Wilmot were over, I took Whitney’s harness off and let any of the interested kids come by and pet her. As Whitney flipped over and over again for belly rubs, one of the school volunteers there told me that after the presentation the day before, Melissa Stockwell had the kids come up and touch the prosthetics she works with.

How cool. “I want to go to this school!” I exclaimed to the gaggle of kids at my feet, all of them reaching out to pet Whitney. “I know,” one of them said. “We’re lucky.”

 

Best and worst cities for people with disabilities

I’m a Chicago baseball fan, but with the way the Royals have been playing during the 2014 post-season, I’m starting to wish I lived closer to Kansas City. And now, a new ranking of the best American cities for people with disabilities gives me even more reason to move there: the Kansas City, Missouri, suburb of Overland Park was named #1.

The consumer finance website WalletHub says it based its rankings on economic environment, health care, and accessibility:

We analyzed the 150 most populated cities across 23 key metrics, ranging from the number of physicians per capita to the rate of employed people with disabilities to park accessibility. By doing so, we aim to ease the process of finding the best place to live while managing a disability.

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

In Chicago, the red line subway gets us to 2 major league ballparks!

In Chicago, the red line subway gets us to 2 major league ballparks!

The term “people with disabilities” (PWD) is pretty vague. 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). Three cities in Arizona made the top five, 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.

Chicago ranked way down at 141 on the list, but at least we weren’t last: that honor went to Providence, Rhode Island, at #150. For now, at least, I’m staying here in the Windy City and will settle for watching the Kansas City Royals on TV. The availability of public transportation here lets me live more independently; I know my way around already; and my Seeing Eye dog loves the cold. It’s My Kind of Town.

 

Get more information on accessible transportation from Easter Seals Project Action website.

 

What I learned about finding a job with a disability

Ben Trockman

Ben Trockman

Last week I had the opportunity to participate in a discussion on the Easter Seals Facebook page about what it takes to find a job when you have a disability. Our chat was called “Launching Your Career: An Honest Chat about Navigating the Workforce with Disabilities” and was a pleasure to join. I was one of a team of panelists selected by Easter Seals to give some — hopefully valuable — insight on the difficulties that may arise when people with disabilities begin to enter the workforce. Others on the panel with me were:

  • Sara Fair, a college senior who interned with Easter Seals over the summer and is beginning to job-search
  • Colleen Flanagan, a working professional with disabilities who has been through it all and now mentors others as a leader of the youth program at Easter Seals Massachusetts
  • Patrick Cokley, a Policy Advisor at the Office of Disability Employment Policy, an agency within the Department of Labor that aims to expand employment opportunities for people with disabilities.

Our discussion covered topics such as disclosing your disability, resume writing, interviewing for a job, and much more. We answered some important questions from the crowd and shared our experiences.

For me, after graduating with a degree in Public Relations from the University of Southern Indiana, my “real job” experience started with an internship with the Public Relations Department at Easter Seals Headquarters. After I started the internship, I was excited to receive a job offer from Old National Bank in my hometown of Evansville, Indiana.

The job, as a Community Outreach and Employment Specialist (more to come in my next post) is an absolutely perfect match for me! But, before I accepted my position at ONB, I had to explore the feasibility of earning a “fair” wage, while continuing to receive Medicaid benefits — the benefits that provide for my nurse/assistant to come to my home in the mornings, get me ready for work, assist me throughout the day, and get me home safely.

Be sure to check out the Easter Seals blog next week. In my next post, I’ll give you more details about my new career at Old National Bank, and explain how I found the MED Works program offered in Indiana, the program that allows me to go back to work while continuing to receive Medicaid benefits.

These are the types of issues we discussed in last week’s Facebook chat, and you can read the whole panel discussion on employment on Easterseals.com. If sharing my story helps other people with disabilities successfully transition back into the workplace, well, I am doing my job!

 

Costumes for kids with disabilities

enhanced-buzz-wheelchair-icecreamtruckFall can be such an exciting time — apple cider, pumpkin picking, and the favorite holiday for many children: Halloween. Finding just the right Halloween costume can be stressful for parents of children with disabilities, however: certain costumes overload the senses, impede mobility, or are just plain uncomfortable to wear. Here are some tips to help your child enjoy Halloween as much as you do:

  • Let your child’s interests shine: Help your child choose a costume that reflects his/her interests
  • Learn to incorporate your child’s wheelchair into his/her costume: If your child uses a wheelchair, a lot of great and creative ideas can incorporate the chair into their costume.
  • Do a trial run before the big day/night: Some costumes might be unexpectedly uncomfortable or cumbersome, and you’d hate to wait until 5 minutes before you’re about to leave for school or trick-or-treating to find that ouBatman costume in wheelchairt!
  • A week or so before Halloween, take a walk with your child around the house, or the block, to make sure that they’re comfortable, and that they’ll be able to enjoy the costume and move in it easily.
  • Talk to your child about what they might expect. Sometimes Halloween means your child is exposed to things that might frighten him/her : haunted houses, scary costumes or noises. Talk to your child about things they might encounter during trick-or-treating, and practice self-calming skills in case they do get frightened while out that night.
  • Research the sorts of treats your child can eat. Many children with disabilities may have food allergies or sensitivities that limit the treats they’re able to eat.
  • If your child is non-verbal, Halloween can be a great opportunity to work on initiating communication! Program your child’s communication device to say “Trick or treat” or ask his/her teacher to design a picture symbol your child can use as he goes door to door.

Buzzfeed had an especially impressive list of costumes –- complete with pictures –- that work with wheelchairs, and you can find a list of candies that don’t contain the top eight allergens on a blog called Sure Foods Living.

Anything special you’ve done over the years to help a child have an amazing Halloween? Share your ideas with us here in the comments.

 

How many homeless people have a disability?

My Friend watches over me at this corner.

Every morning when I take my Seeing Eye dog out for her “constitutional” we pass the same homeless man sitting on a crate. “StreetWise!” he calls out. “Can you give a little hepp today?” StreetWise is a newspaper sold by homeless people in Chicago. The concept is that by selling StreetWise, people down on their luck might get back on their feet.

I’ve always nodded and smiled the vendor’s way as we pass. Since I can’t see to read, though, I never bought one of his papers.

And then came that one wintry afternoon in December.

I left my Seeing Eye dog at home that day to go Christmas shopping with a friend — crowds can be so fixated on shopping that they step on the dog. I cabbed home on my own afterwards, and when I fumbled with my white cane at the curb I heard a voice call out to me with a familiar mispronounciation. “Want some hepp?”

It was the StreetWise vendor. I grabbed his arm, and from the way my hand pumped up and down as we plodded to my doorway I could tell he had an extreme limp. Polio, maybe? I dunno.

When we finally arrived, I held out a bill that had one corner folded and asked for a copy of StreetWise. “They only cost two dollars,” my helper said. “You’re giving me a five.”

“I meant to give you a five,” I said, showing him how I fold money to keep track of the denominations. “Thanks for the help, and keep the change,” I told him. “Merry Christmas!”

W.C. and I have been friends ever since. “Hello Mizz Lady!” he calls out to me when Whitney and I pass him in the morning. And if we don’t pass him, W.C. notices. “You went a different way earlier,” he’ll say. “I was worried.”

A report by The Department of Housing and Urban Development found that 37% of those who sought emergency shelter or transitional housing in 2010 had a disability. October is Disabilities Employment Awareness Month — our nation has recognized the contributions of workers with disabilities since 1945, first as a single honorary week in October and then, beginning in 1988, the entire month of October. In an official presidential proclamation about Disabilities Employment Awareness Month, President Obama urged all Americans “to embrace the talents and skills that individuals with disabilities bring to our workplaces and communities and to promote the right to equal employment opportunity for all people.”

During Disabilities Employment Awareness Month, and every month, Easter Seals helps people reach their employment goals. Need some help? Or do you know someone like W.C. who does? Learn more about Easter Seals Workforce Development services.

 

Uber and the ride-sharing vs. registered taxis debate

taxi-minivanYou might remember that op-ed piece I wrote last April for the Chicago Tribune called “Should ride-sharing services adhere to the Americans with Disabilities Act?” Well, six months later, the ride-sharing vs. registered taxi driver issue is heating up all over the country. Another op-ed article –- this one called “The Dark Side of Uber and Lyft” — showed up in the Chicago Tribune this past week. Ride-sharing has become particularly popular In San Francisco, but an article in the San Francisco Chronicle raised concern that only 100 of the city’s 1,885 taxis are currently wheelchair accessible. And three plaintiffs in Houston and San Antonio have filed lawsuits against Uber and Lyft, claiming the companies violate the Americans with Disabilities Act.

No decision on those Texas law suits yet, but perhaps it’s due to concerns from the disability community that Uber launched UberASSIST last month? Uber Assist gives people like me, who have visual impairments, or others, who use wheelchairs, the opportunity to notify drivers of our disabilities before they come pick us up. The idea is that people with disabilities who alert drivers ahead of time will get paired with a driver who can accommodate special needs — an Uber blog post explains that “UberASSIST vehicles are driven by trained UberX partners who are knowledgeable of accessibility needs and can offer assistance for those who may require extra help.”

The post says these vehicles can accommodate folding wheelchairs but are not wheelchair accessible ramp vehicles. Uber says that it will provide options for wheelchair-users who need wheelchair-accessible vehicles with lifts or ramps in the future, but it sure is hard to imagine how that would work: Companies like Uber use freelancers who drive their own vehicles, and freelancers don’t often drive vehicles with ramps and lifts on them.

As for guide dogs, Uber does not have a policy about whether or not their drivers will allow people who use service animals in their cars. The only reference to animals in their policy statement is one that says they “leave the decision whether or not to transport pets at the discretion of your driver.”

Since Uber cars are privately owned and operated by independent contractors, they don’t have to follow the Americans with Disabilities Act (ADA).  The ADA says “public transportation authorities may not discriminate against people with disabilities in the provision of their services” but it doesn’t say anything about private rides.

In addition to launching UberAccess last month, Uber also announced plans to help reduce the high unemployment rate among military families by hiring 50,000 service members, veterans, and their spouses in the next year and a half. I’m all for hiring veterans and their families, but after the little research I’ve done to write this blog post, I’ve gotta wonder if any of America’s 3.6 million veterans who have been injured serving our country will be able to access the Uber services their fellow vets will be providing. We hope so! What do you think?

 

Chat with us on finding a job with a disability

ODEP-logoI’ll tell you a dirty little secret: it takes me longer than my sighted peers to get my work done.

I’m not supposed to admit this. Thing is, 70% of people who are blind – like me — are unemployed. The unemployment rate among people who have disabilities is equally appalling, and most of us would like to work. So we’re supposed to say we’re just like everyone else. You know, so employers won’t be afraid to hire us.

But truth is, we’re not like everyone else. Braille takes longer to read than print. Searching a web site by ear with a talking computer takes up more time than using the screen. Cutting and pasting can be slower with a talking computer, too. And so, I wake up early, put extra time in, go the extra mile. And I’m not alone. If you have a disability, and you have a job, you have to be resourceful.

Ben Trockman

Ben Trockman

Join our Facebook chat tomorrow to learn what it takes to find a job when you have a disability, and get some valuable insight on the difficulties that arise when young people with disabilities begin to enter the workforce. “Launching Your Career: An Honest Chat about Navigating the Workforce with Disabilities” starts tomorrow, Tuesday, October 7 at 2 p.m. (EST), and you can join in on the conversation at Facebook.com/easterseals.

A team of panelists selected by Easter Seals are prepared to offer wisdom, advice and their personal experiences finding a job:

  • Sara Fair, a college senior who interned with Easter Seals over the summer and is beginning to job-search
  • Ben Trockman, a college graduate who interned with Easter Seals over the summer and started a job this fall
  • Colleen Flanagan, a working professional with disabilities who has been through it all and now mentors others as a leader of the youth program at Easter Seals Massachusetts
  • Patrick Cokley, a Policy Advisor at the Office of Disability Employment Policy, an agency within the Department of Labor that aims to expand employment opportunities for people with disabilities.

Our Facebook chat is open to questions from the audience, so please join in and ask away!

*Prepare for the chat with Claudia Gordon’s 3 tips for launching a career when you have a disability, and offer your comments and ideas below!

 

The last major movie starring an actor with a disability?

I lost my sMV5BNTMzMzUyMzU4N15BMl5BanBnXkFtZTcwMDMyMjgxMQ@@._V1_SY317_CR3,0,214,317_AL_ight when I was 26 years old. After that, I pretty much quit going to movies.

I can still picture movies I saw on TV or at movie theaters before then, though, and it surprises me now to think how many of them happen to center on disabilities. Some examples:

  • In Coming Home (1978) Jon Voight won an Oscar for playing a veteran who was paralyzed in the Vietnam War
  • In An Affair to Remember (1957) Deborah Kerr’s romantic rendezvous with Cary Grant is nearly derailed by a paralyzing accident.
  • In A Patch of Blue (1965) Elizabeth Hartman as a white girl who is blind and falls in love with a black man played by Sidney Poitier.
  • In Butterflies Are Free (1972) Edward Albert as a blind man attempting to break free from his over-protective mother.
  • In Johnny Belinda (1948) Jane Wyman is referred to as a “deaf-mute”
  • The Miracle Worker (1962) stars Anne Bancroft as Annie Sullivan and Patty Duke as Helen KellerMV5BMTk4MzYxODE2MF5BMl5BanBnXkFtZTcwMDU3ODUyMQ@@._V1_SY317_CR5,0,214,317_AL_

As you can see, ahem, disability-focused movies are nothing new. But wouldn’t you think by now, it being the 21st Century and all, far more movies would feature actors and actresses who actually have disabilities themselves? In all the movies I watched when I could still see, I can only think of one where an actor with a disability played a character with a disability: The Best Years of Our Lives (1946) featured Harold Russell (a real-life veteran who lost both hands when a defective fuse detonated an explosive he was handling) as a World War II veteran home from the war. Actress Marlee Matlin is deaf, and of course she won best actress for her role in Children of a Lesser God, but I wasn’t able to see that one – it came out in 1987, a year after I lost my sight.

October is Disabilities Employment Awareness Month, and there must be plenty of actors out there with disabilities, or who are veterans, who are looking for work. (Our friend Kyle Hausmann-Stokes from Veterans in Film and Television will attest to that!)

Can it be true that it’s been nearly 30 years since a major motion picture featured an actor or actress who has a disability? Please leave a comment and tell me I’m wrong!

 

Easter Seals and the TSA Work Together for Travelers with Disabilities

TSA Community Award 09-24-2014

Donna Smith (center)

Easter Seals just received a Disability and Multicultural Coalition Community Partner award from the Transportation Security Administration (TSA). The award was presented at the 12th Annual TSA Coalition Conference by John Pistole from the TSA and Kimberly Walton from the Office of Civil Rights.

Easter Seals Project ACTION (Accessible Community Transportation in Our Nation) promotes universal access to transportation for people with disabilities under federal law and beyond. We support and promote TSA’s efforts to improve the experience of travelers with disabilities in all sorts of ways — let me give you some examples:

  • Easter Seals Project ACTION has been providing customer service/sensitivity training to new TSA employees for two years, and in that time more than 700 employees have learned the best ways to serve air travelers with disabilities and their families.
  • Easter Seals Project ACTION also helps promote TSA Cares, a new service that allows air travelers with disabilities to give TSA their travel plans in advance.
  • Travelers with disabilities can also use TSA Cares to access needed information about the screening process as well as arrange for a Passenger Support Specialist to meet the traveler and assist them through the entire security process from start to finish.
  • This year, Easter Seals Las Vegas and Easter Seals Florida helped the TSA conduct roundtable discussions to help them understand what customers with disabilities experience.

When Assistant Administrator Walton from the Office of Civil Rights presented us with the Disability and Multicultural Coalition Community Partner award, she said the training provided by the Las Vegas and Florida affiliates played a major role in TSA’s success in improving the experience of travelers with disabilities, and we couldn’t be happier about that.