How Asperger’s Syndrome is Like a Checkered Flag

A checkered flagToday’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 on a sailboatAaron 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

A stethoscope on top of a generic medical recordThe 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 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.


Why You Should Think Twice About Faking a Service Dog

A yellow Labrador retrieverI’m blind, my Seeing Eye dog Whitney guides me safely wherever I need to go, and in the past I’ve been pretty clear here on how I feel about people in America faking their pet is a service dog to get them into places dogs are not allowed.

Most of the blogs, tweets and podcasts I hear chastising dog owners who do this have been written by someone like me, who has a disability. So it was refreshing to read this compassionate article called Stop Faking Service Dogs by a dog lover who writes for Outside online magazine. Reporter Wes Siler doesn’t have a disability himself, and in his article he questions why others like him think it’s okay to fake it.

The article describes what qualifies a dog as a service animal in a way any average person should be able to understand.

Siler explains that the Americans with Disabilities Act limits the definition of a service animal to one that is trained to perform work or a task that helps a person who has a disability, and Dogs whose sole function is to provide comfort or emotional support do not qualify as service animals under the ADA. “So, while a dog that is trained to calm a person suffering an anxiety attack due to post-traumatic stress disorder is considered a service dog,” Siler writes. “A dog whose mere presence calms a person is not.”

Still, people claim their therapy and emotional support dogs qualify. In his article, Siler quotes a man named Randy Pierce describing a flight he went on once with his guide dog Autumn that also had an unruly emotional support dog on board who barked incessantly during the entire trip. “My dog was not barking back, but the barking was changing her behavior,” Pierce said. “That makes it harder for her to do her job; she loses her focus. I’m 6’4″, so if she loses her focus, it means I’m going to hit my head on an exit sign or a doorway or, if we’re on a street, maybe even step out into traffic.” From the article:

“Pierce’s dog, Autumn, completely ignores other dogs, doesn’t beg for food, sits quietly for the duration of long flights, and generally minimizes her impact. That’s the result of lots of money—service dogs cost upwards of $20,000—and thousands of hours of training. Pierce, for example, has developed a routine with Autumn that involves the dog communicating when she needs to go to the bathroom, and then doing so in a specific orientation to Pierce that enables him to easily find it and collect it in a baggie. A true service dog is essential to its human partner’s well being, as well as a huge financial investment that other untrained dogs in public places put at risk.”

Note: when it comes to the cost for training guide dogs for people who are blind, most of the funds come from donations to the organizations that train them. The cost to train some service dogs to help people with other disabilities can fall directly on the person with the disability, though.

The article refers to a study conducted at the University of California at Davis that says between the years 2002 and 2012 the number of “therapy dogs” or “emotional support animals” registered by animal control facilities in the state of California increased by 1000 percent, and that the increasing presence of emotional support dogs on flights and at businesses is creating a backlash that impacts true service dogs (Pierce said on his flight with guide dog Autumn he overheard a flight attendant telling her colleague that she “wished they wouldn’t allow service dogs”).

I hope you’ll read the entire article – there’s a lot more oomph to it than I can fit into a blog post here. How about I leave you here with my favorite part, where reporter Wes Siler just lays it out for readers:

“Look, I get the desire to bring your pet along with you everywhere you go. My dogs are as important to me as my friends and family. The first criteria my girlfriend and I apply to where we eat, drink, and travel is whether our dogs can enjoy it with us. But out of respect for the needs of disabled people, for the incredible work that real service dogs perform, and for the people managing and patronizing these businesses, we will not lie. We do not take our pets places where they’re not welcome. We never want to compromise the ability of a service dog to perform its essential duties.

As an animal lover, don’t you want the same thing?”


What Does School Choice Look Like for Students with Disabilities?

A box of crayonsAll the attention — and destruction — Hurricane Irma has brought the state of Florida this past week got me thinking about all the kids who have had to have there brand new school year disrupted. And that made me think of a story I heard about the experiences two families in Florida who have sons with autism have had with public schools and “school choice” there. I’ve been wanting to blog about that story here ever since I first heard it on NPR.

“Today we’re going to meet two special needs families in Florida,” the story opens. “President Trump and Education Secretary Betsy DeVos have repeatedly touted the state as a national model for the expansion of school choice.”

The first Florida family they feature on the radio story has a child named Ayden, who has autism and had meltdowns when he attended a public school. His mother told the reporter that he came home from school one day with injuries from being physically held down. “I was horrified,” she says in the interview. “He was covered in bruises.” NPR reported that St. Lucie Public Schools would not comment for the story, citing privacy.

Aiden’s mother pulled her son out of the public school after that and started searching for a private school instead. From the story:

“Helping kids like Ayden find a better fit is exactly why vouchers for special needs students were created. Ayden is eligible for the McKay, which provides about $11,000 to attend a private school. McKay is the biggest and one of the oldest such programs in the country.”

Sounds good, but while several private schools nearby advertise they take students with autism, Aiden’s mom couldn’t find a school within driving distance that will accept her son. “The minute you call them, they’re like — oh, well, we don’t really have the staff to handle your child.”

Our son Gus has developmental and physical disabilities, and we had good experiences with the public schools he attended when he was younger. A number of other kids with disabilities at the different public schools Gus attended came from families who sent all their other children to private schools. When I naively asked the parents why they didn’t send their special needs child to the same Lutheran or Catholic school the siblings attended, they’d just shrug and point out what, to them, was obvious. Public schools are required by federal law to take every student no matter what. Private schools don’t have to.

The NPR story interviews another family whose son Reed, who has autism, attended a tiny Christian school in Florida until middle school. “The family brought in a therapist for Reed at their own expense and had her train the teachers in following Reed’s behavioral plan,” the reporter explains. “But the school ended after fifth grade, and the family was rejected by several other private schools.”

Reed sings in the choir at the public school he attends now and is making A’s and B’s in mainstream classes. “We’re a regular old comprehensive public school,” Reed’s school principal tells the reporter, noting that means they have an autism specialist on staff.

I hope you’ll give the NPR story a read. It does an excellent job of pointing out what many Americans don’t realize: families have fewer legal protections outside the public schools, starting with the basic right to an education. And given the services some children with special needs require, often a voucher is not enough.


Think Ahead: Apply Now for 2018 Summer Internships

The U.S. Flag by a windowWait a minute. Didn’t the school year just start? Well, if you are in college right now, or will just be finishing college in 2018, or plan on attending law school or grad school,believe it or not,the AAPD Washington DC Summer Internship Program for Students with Disabilities is already accepting applications for their 2018 program.

AAPD stands for the American Association of People with Disabilities, and their summer internship program provides college students, law students, new graduates and other graduate and professional students with all sorts of disabilities the opportunity to work in public service for 10 weeks on Capitol Hill and at federal agencies. Each intern is matched with a mentor who will assist them in their career goals, and as if that isn’t enough, the internship also provides the interns with a stipend, transportation to and from Washington, DC, and fully-accessible housing. From the AAPD web site:

“At the beginning of the summer, interns participate in a 1-week orientation session to learn about AAPD as well as the disability rights movement, meet the other interns, and participate in a variety of engaging workshops and events. As part of the AAPD network, interns also receive opportunities to attend events on Capitol Hill, conferences, community events, happy hours, and more.”

If you qualify, I guess it’s never too early to apply! The application is available online now. and is due on November 6, 2017.


These 68 Companies Score High When It Comes to Disability Inclusion

A close up on two hands drawing a geometric figure in a notebook.I hear stories on TV and radio business shows that say people with disabilities are a large and growing market, and they always leave me wondering: Don’t businesses understand that one good way to tap into that market might be hiring workers with disabilities at their companies?

I can quit wondering, I guess — results of this year’s Disability Equality Index (DEI) reveal that many of them do.

This is the third year that the American Association of People with Disabilities (AAPD) and the US Business Leadership Network (USBLN) have teamed together to evaluate inclusion and equality for people with disabilities, and 95% of the 110 companies that participated reported having recruitment efforts in place that are specifically geared toward hiring individuals with disabilities (that’s an 11 percentage point increase since 2014)., a record 68 employers have earned the top rating of 100:

  • 3M
  • Accenture LLP
  • aetna
  • AMC
  • Ameren
  • American Airlines
  • Anthem
  • Aramark Corp
  • AT&T
  • BAE
  • Bank of America
  • Blue Cross, Blue Shield, Blue Care Network
  • BMO Harris Bank
  • Booz Allen Hamilton
  • Boston Scientific
  • Brown Forman
  • Capital One
  • Cargill
  • Cigna
  • Comcast NBC Universal*
  • CVS Health*
  • Delta
  • DTE Energy
  • Dupont
  • DXC Technology
  • Express Scripts
  • EY Building a better working world
  • Financial Industry Regulatory Authority (FINRA)
  • Florida Blue
  • Freddie Mac
  • General Motors
  • Goldman Sachs and Co
  • GSK
  • Health Care Service Corporation
  • Hewlett Packard Enterprise
  • HP Inc.
  • Huntington National Bank
  • Intel
  • J P Morgan Chase & Co.
  • Kaiser Permanente
  • KPMG
  • Lincoln Financial Group
  • Lockheed Martin
  • Manpower Group
  • Mayo Clinic
  • Microsoft
  • Northrop Grumman
  • Pacific Gas and Electric Company
  • PNC Financial Services Group
  • Prudential Financial
  • pwc
  • Qualcomm
  • Southern Company
  • Sprint
  • Starbucks
  • Synchrony Financial
  • T Mobile
  • TD Bank
  • The Boeing Company
  • Dow
  • The Hartford Financial Services Group
  • The Procter and Gamble Company
  • United Airlines, Inc.
  • Verizon
  • Walgreens
  • Walmart
  • Wells Fargo
  • Whirlpool Corporation

The site where this list appears is quick to note that a score of 100 does not mean to convey perfection, it simply means that a company adheres to leading disability inclusion practices featured in the Disability Equality Index. “AAPD and the USBLN recognize that there is no one ’right way’ to practice inclusion, and that some practices may be more practical for some companies or industries than others.”

*Notes an Easterseals partner


7 Advantages of Being Blind

Easterseals National blog readers might recall a post called Taking on college and getting around campus when you can’t see it that guest blogger Alicia Krage wrote last year during her first weeks at a large university. Alicia starts her second year at Northern Illinois University this month and is back with an update.

Ali and Joe.

Ali and Joe.

by Alicia Krage

Sometime last year during my first semester away at college, I had a few consecutive days where everything that could possibly go wrong went wrong. What made this even worse was that everything that went wrong was because of my blindness. My bus was late because scheduling got messed up, my screen reading software wouldn’t read a document correctly, and on and on. My mantra on those days seemed to be “This would be a lot easier if I could see.”

If I could see, I could’ve just walked to class. It would’ve taken a while, but it probably would’ve been more effective than waiting for a bus. Better yet, maybe I could’ve driven there. If I could see, I wouldn’t have accessibility issues; I’d read things on the computer like my classmates do.

So after a few consecutive days of continuously having things go wrong, I talked to my boyfriend about it. I was very upset and was confiding in him about everything that went wrong and how that made me feel.

My boyfriend Joe is also blind, and I was sure he had these days too.

He had.

He also told me that it had taken him a while to feel confident and accept his disability — and that yes, some days are harder than others.

But then, after patiently waiting for me to finish up my stories and get everything off my chest, and after he offered some words of encouragement, he reminded me that while it does have its setbacks, being blind does have its advantages, too. And so then we discussed them.

  1. Not being able to see allows me to get to know somebody based on their personality rather than their looks. I can tell a lot about a person based on how they converse with me. If somebody greets me and sounds cheerful, I can presume that they’re an outgoing person who’s relatively easy to talk to.
  2. I’m a good multitasker. As a blind person, I have to listen to multiple things at once, such as various sound clues when traveling. At a coffee shop I can listen to various conversations and observe many things at once. This is a natural thing for me, so wherever I am I’m very observant of my environment.
  3. Being able to fully focus on a TV show or movie while in another room. There have been several occasions where I’m watching a TV show and doing something in another room, but as long as the volume is up, I’m perfectly capable of following along since I don’t have to look to see what’s going on.
  4. Communication is a lot easier. My boyfriend is blind, too, so I’ll use my relationship with him as an example . Communication has always been something we’ve been very good at, and part of that is probably because we can’t just look at the other’s face to see if they’re okay, if something’s bothering them, or if something’s wrong We must say these things out loud in order to make the other person aware of it.
  5. I’m resourceful and able to learn things that others might find difficult. I have a lot of blind friends, and they have taught me how to do various things on my iPhone or on my computer that a sighted person probably wouldn’t be able to teach me.
  6. Appreciating the little things. I find happiness and beauty in the smallest things: the sounds of the crickets at night, waking up to the birds outside my window, or falling asleep to the rain (when it starts to rain as I drift off to sleep, it’s relaxing and a really nice sound).
  7. Reading. I listen to audio books on my phone, and I can do this while I do laundry or other tasks. This makes reading a lot easier. I like reading Braille, but I’ve read more books since I’ve gotten a Bookshare account and listen on my phone

Talking with Joe about all this really made me realize that while yes there are some setbacks, there are great things that don’t require vision — there are great moments in life you don’t have to see with your eyes.

More posts by Alicia Krage:

How One Student Who is Blind Planned the Perfect Date
“Dating someone who is blind is honestly not as hard as it sounds”
Taking on college and getting around campus when you can’t see it
Taking on college with a disability, part two
Do I prefer to date people who are blind or not?


How Can Parents Help Their Children Have Disability Pride?

Every couple of months here at Easterseals, we host Twitter chats centered around issues relevant to people with disabilities and their families. Past topics have included financial wellness, fearlessness, media representation, and inclusion.

On July 20, 2017, we were joined by an incredible group of folks who tuned in using the hashtag #DisabilityInFocus to discuss disability pride and unity. The conversation was insightful, with a diverse array of perspectives represented.

A few weeks ago, we featured tweets from the chat on self-advocacy, and today we’re talking tips on how parents can help children with disabilities have pride in themselves. Stay tuned for more featured tweets from this chat, and if you’d like to read our full conversation, be sure to check out our recap!





















What it Was Like to Listen to the 2017 Solar Eclipse

Beth listening in on the appWBEZ (Chicago Public Radio) had me come to the studio yesterday morning to talk about using the eclipse soundscapes app to experience Monday’s solar eclipse. If you missed it, you can listen to the 12-minute interview online here. I was relieved when host Tony Sarabia opened the interview by saying he’d tried the app himself and found it cumbersome.

It was.

I didn’t want to have to say that, though, and Tony’s opening let me off the hook. “It’s a work in progress,” I said. “And I’m grateful they’re even trying.”

The app was a success in one very important way. It got me outside Monday to be part of the community. There I was, iPhone in hand, alongside strangers in sunglasses and neighbors using DIY pinhole eclipse cameras made from cereal boxes.

As the eclipsed neared it’s 87% high mark for Chicago, the delivery guy from the downstairs take-out joint offered to lend his special sunglasses to my husband Mike to take a look. Mike could say “Yes!” without feeling obliged to stand by and describe things to me –I was busy swiping my iPhone. That, or putting it up to my ear to listen. I had to laugh when I told the radio host that, “Some people must have thought I was an idiot, listening to my iPhone while they all were looking up to the skies!”

The Harvard Solar Astrophysicist behind eclipse soundscapes is Henry “Trae” Winter, described as a scientist with a penchant for scientific engagement projects. He was building a solar wall exhibit for museums when he first noticed some “accessible” exhibits merely included the item’s name in Braille, while other exhibits — including his own — had no accessibility component at all.

“Winter began to brainstorm an astrophysics project that would use a multisensory approach to engage a larger percentage of the population, including the visually impaired community,” the app says. . “The ‘Great American Eclipse’ of August 2017 seemed like the perfect opportunity.”

As the eclipse progressed Monday, I sensed the air feeling a bit cooler. The wind seemed to pick up a bit as well. The app advertised a “rumble map” that was supposed to vibrate and shake to let me feel different features of the eclipse, but I was never able to get that feature working. The sound on the eclipse soundscapes app did work, though. Any time I ran my pointer finger over the screen I’d hear a whir that sounded like a low-pitched kitchen blender. When the blender ran faster, the pitch would go up, and that meant the light was really bright there. When my finger slid over the moon, the kitchen blender turned itself off=completely dark.

The app narrated the eclipse’s progression in real time, too, and during my WBEZ interview Tony Sarabia read a snippet of an eclipse soundscapes description out loud in his own voice:

Projections of light from the sun’s outer atmosphere called helmet streamers extend in all directions from behind the moon. In contrast to the black, featureless moon, the pale, wispy streamers appear as delicate as lace. The largest streamers have a tapered shape that resemble flower petals.

On air I pointed out that the description he read was “poetic.” Notice how it’s written using things we can touch, like lace and flower petals? Specialized imagery description techniques developed by WGBH’s National Center for Accessible Media were used for the real-time narrations.

Mike and I were out there Monday for about a half hour. I took iPhone breaks from time to time to eavesdrop on the group next to me discussing where they’d looked for their special sunglasses, how long the line at the Adler Planetarium was that morning, what they’d found on the NASA site, and what they were seeing through the sunglasses they eventually managed to get their hands on.

It was all pretty cool, until a TV news helicopter decided to hover overhead. My little eclipse soundscapes app didn’t stand a chance. With all that real-time whirring going on above us. I couldn’t hear a dang thing!

Read part one of Beth’s take on the Eclipse Soundscapes app


Can I Enjoy the Solar Eclipse Without Seeing It?

A total solar eclipse

Photo by Luc Viatour via Wikipedia

A show called The World aired a story on Public Radio International (PRI) this past week about an app called eclipse soundscapes made especially for people who are blind or have visual impairments.

I am blind now, but trust me, that isn’t the result of staring at the sun! I could see fine when I was a kid, and I watched the total eclipse of the sun on March 7, 1970 using a pinhole camera our school teachers taught us to make out of cardboard shoeboxes. I didn’t lose my sight until 15 years later, and that was due to a totally unrelated eye disease called retinopathy.

Hearing things touted as allowing “the blind to see” usually leaves me feeling sad. Audio description does not help me see a movie, and special lessons for the blind to teach us to plié might help me understand the moves dancers are making on stage, but they won’t allow me to see the performance. So when I found out the PRI story was titled “Helping the Blind See the Solar Eclipse” I almost switched it off. As cool as this new eclipse app might be for people who are blind, I knew it wouldn’t allow us to watch the eclipse.

But something about this thing being created for “NASA’s Heliophysics Education Consortium” and the Smithsonian Astrophysicalogical Observatoryby with an astrophysicist from Harvard and co-sponsored by the National Park Service, well, gee whiz, it caught my attention!

The PRI story included a link to a web site for more information about the eclipse soundscapes app, and the wording there was just right. It says that for people “who are unable to see the eclipse with their own eyes, the Eclipse Soundscapes Project delivers a multisensory experience of this exciting celestial event.” Not a word about us seeing the eclipse. They acknowledge we can’t see.

The site explains that the ap includes a narration of the eclipse’s progression in real time and a rumble map that will let us use our sense of touch to “geolocate the user and start the narration to align with the planetary movements as they occur.” Maybe I’ll be able to tell you what that all means next week. I am so taken by the way this site describes what it will do for those of us who are blind that I’m going to give it a try . Tune in after Monday, August 21, 2017 for a blog post here about my eclipse experience.