Coding For Everyone

I love writing blog posts about things that make common sense. This is one of those posts.

The screen at the Apple event

Photo credit: Mike Knezovich

Last week Apple commemorated Global Accessibility Awareness Day (a day emphasizing the importance of accessible tech and design) by announcing a new partnership with Hadley Institute for the Blind and Visually Impaired to bring its Everyone Can Code curriculum to more people with visual impairments.

Apple products have long been a favorite of people who have disabilities, and that’s because accessibility features we use come automatically with each Apple product, which means we don’t have to pay for extra software to make Apple products work for us.

One of the many, many reasons I decided to buy an iPhone back in 2011 was to support the idea of universal design: the iPhone 3GS was the first touch-screen device that blind people like me could take out of the box and use right away. Apple products come with speech software called VoiceOver (built-in screen access for people who are blind) that miraculously allows us to interact using the touch-screen.

The audience at the event

Photo credit: Mike Knezovich

I need a refresher course every now and then, though, so when I heard that Douglas Walker, Hadley’s director of assistive technology, was in Chicago last Tuesday to give a free VoiceOver course at the Chicago Apple store, I signed up. In retrospect, I should have known there was some big announcement on the horizon!

Hadley has been offering correspondence classes to teach Braille to students for nearly 100 years, but lately the free videos Hadley offers about using accessibility features built into Apple devices have become far more popular than the Braille classes the school offers. Walker, the man who taught the VoiceOver course I attended Tuesday, narrates the VoiceOver videos by talking through the gestures. “Don’t worry that it’s a YouTube video,” he laughed during class Tuesday. “Really, all you have to do is listen.”

The series of new videos Walker will narrate for the Everyone Can Code partnership will follow a pattern similar to Hadley’s other instructional videos, starting by using games to teach people how to code. The videos will be available free of charge, and kids and adults who want to teach themselves to code can use the videos at home in addition to teachers who use the videos in classrooms.

“Often, people suffer vision loss as adults and have to start over,” Colleen Wunderlich, director of the Forsythe Center for Employment and Entrepreneurship at Hadly pointed out in a Chicago Tribune article last week. “People sometimes leave the workforce to adjust to their new reality. With the proper training, people who are blind or visually impaired could pursue a career in coding.”

Let’s face it. The ability to code is a great skill to have on a resume. As Douglas Walker said in that same Chicago Tribune story last week, “Coding is definitely the future for everyone, even when you’re in your 50s.”

Gee whiz. That means even I can give it a try.

 

How My Smart Phone Helps Me Navigate the World

iPhone with headphonesBefore I had an iPhone, I had a Samsung Jack. It’s been six years since I had that old phone, but I can vaguely remember the layout — it looked like a Blackberry. The speech software for the Samsung Jack was called Mobile Speak, and it didn’t come with the device. We had to download it separately.

That Samsung Jack got old fast. Mobile Speak froze up a lot, my mom had to constantly re-download it for me, and she finally insisted I get an iPhone.

I didn’t want one. I wasn’t at all happy to hold that first iPhone 4s in my hand. The touch screen was too difficult to maneuver. I had no idea what I was doing.

But, as it goes with almost everything my parents recommend, they were right. The idea –and the feel of the phone — grew on me. Six years later, I can’t imagine life without an iPhone.

A few friends with visual impairments like Android, and they’ve recommended an it to me. I’ve seen how the speech software works on Android, though, and in my opinion, it isn’t as good. I just love Apple now.

After having the iPhone 4s for two years, I upgraded to the 6, and I got 3.5 years out of that one. With Voiceover (the built-in speech software that comes with Apple products), I am able to turn the “screen curtain on.” That is, I can darken the screen completely. To put that into perspective, nothing shows up visually on the screen. It basically looks like the phone is black and I’m playing with a phone that is dead.

And yes, I do sometimes get comments from people around me like, “Umm, I think your phone is dead…there’s nothing on the screen.”

But think about it. The only time I have the visuals show up on the screen is when I need sighted help, and I don’t need sighted help with my iPhone very often. That means the screen is almost always, always dark. And because I don’t use the camera or apps like Snapchat or Instagram, my battery doesn’t drain as quickly and I can get a lot more battery out of my phone.

After 3.5 years with my iPhone 6, though, my phone started to slow down. The battery would start to rapidly drop. Apps would take forever to load. This posed a problem. I have always been someone who’s out and about, especially during the school year. I use my phone A LOT…for everything. Some examples:

  • I use it for things like social media and email.
  • I have a GPS app that I activate when I can’t hear the stops on the train.
  • If I’m going somewhere I’ve never been before, I use Google Maps to look up the mileage to calculate the cab fair.
  • I also use Google Maps to make sure I’m going where I want to go when I’m in a cab.

I’m going on a cruise with my family this summer, and I’ll have my phone off for a week. When I still had that iPhone 6, it being so old, I was afraid it would never turn back on again. So, after the semester ended, I went out to the Apple store to upgrade from the iPhone 6 to the iPhone 8. I’ve had it only for a short time, but I already notice a major difference.

First and most important: better battery. As I am writing this blog post, I’ve had it unplugged for almost three hours, and the battery charge is only down to 96 percent. My old iPhone 6 would’ve probably been somewhere in the 60 percent battery range by now. Dictating texts would drain a lot of the iPhone 6 battery, and typing made it even worse. It was a struggle. But now, yes, even when I wake up early in the morning, my new iPhone 8 is still charged. That’s very important: I use my phone to text my friends who like early mornings, too.

My iPhone 6 sounded good, but it wasn’t until I got the 8 and heard Voiceover that I realized how loud I had to have my iPhone 6 turned up to hear it. The speaker on the iPhone 8 seems to have better quality. I can keep my phone at a lower volume and hear it just fine. Another thing I like in the iPhone 8 is the touch ID fingerprint option. It’s a lot faster, which allows me to read texts faster. Very handy when my friend is texting me “I’m here” when they’ve pulled into my driveway.

My old phone took a while to load anything. Or, I’d tap on messages and it would open my music, so I’d have to try again, further delaying reading text messages from friends. My apps load faster, which is good if I need to pull up a GPS.

When I was at the store to buy my new phone, the Apple employee told us that Voiceover was quicker now. I wasn’t entirely sure what he meant by that, but now I know. As someone who goes out a lot, I’m happy I don’t have to constantly check my battery to make sure it’ll last. I never realized before how much I truly need a working phone, but I do now: I finally have one that’s functional again!

 

I’m Ready For An Emoji That Represents My Disability

I am completely blind. I can’t see emojis. The speech synthesizers on my laptop and phone describe them to me when they appear on screen, though. Want an example? Here’s a sampling of what I hear when choosing from the list of “Smileys and Other People” emojis:

  • “Winking face with stuck-out tongue”
  • “Smirking face”
  • “Face with rolling eyes”
  • “Flushed face”
  • “Thinking face”
Emojis including a Seeing Eye dog, hearing aid, person in wheelchair, person with a cane, prosthetic leg and someone motioning toward their ear

The emojis proposed by Apple

While researching this post I learned that members of the LGBTQ+ community have images representing them in emoji form — images of same sex families, two men holding hands, two women doing the same, rainbow flags. Cool! A couple of years ago I started noticing the speech synthesizer on my iPhone was calling out the skin tones of emojis, too. I follow Chance the Rapper on Twitter, and I smile any time he posts a tweet followed with something like “hands with medium skin tone pressed together.”

This increased representation is paramount to inclusion. But there is still work to do.

My research taught me there are 2,666 little images, symbols, or icons available to use in electronic communication, but guess how many represent people with disabilities?

One.

You read that right. More than 1 billion people worldwide have some form of disability, and one symbol – the image of a wheelchair – is meant to represent all of us.

Eyebrows up! That may change soon. The Unicode Consortium is discussing 13 new emojis to represent people with disabilities. In its submission to the Unicode Consortium, Apple wrote:

“Apple is requesting the addition of emoji to better represent individuals with disabilities. Currently, emoji provide a wide range of options, but may not represent the experiences of those with disabilities.”

I’ll say!

I’ve been using Twitter a lot more lately. Just last night I left a tweet to a local radio station that was interviewing author Robert Kurson, who has just come out with a book about space travel. My tweet mentioned that Kurson is also the author of “Crashing Through,” a book about a man who was blind and had some of his sight restored after experimental — and quite painful — medical treatments. I used so many characters to explain Crashing Through that I didn’t get a chance to mention that I, too, am blind. Imagine how many characters I’d save if I could just use the guide dog emoji. Or the one of a person walking with a white cane.

Thirteen new emojis have been suggested, everything from a man and a woman making the sign for “Deaf” to that one I mentioned above, the guide dog wearing a harness. Others depict people using canes, wheelchairs, and prosthetic limbs.

If these emojis are approved, they’ll be put on a shortlist of candidates for Emoji 12.0, due to be released in 2019. I say bring ‘em on. Maybe some day I’ll start ending my tweets with “happy person led by smiling guide dog in harness.”

 

Reflections On My Mother, My Disability, and What She Taught Me

Flo and her daughters in the Hancock building for her 95th birthday

Flo and her daughters in the Hancock building for her 95th birthday

Knowing that every parent wants their children to grow up healthy and happy, it dawns on me now that it must have been hard on my mother (I called her by her first name, Flo) to take it all in when I lost my sight. I was 26 years old then. She was 69, and she never let on that she was sad about my new disability or that she worried for me. She encouraged me instead, told me how proud she was of me and how sure she was I’d continue living an interesting –and pleasurable –life.

Our father had a fatal heart attack at home when I was three. Flo raised us on her own. Sometimes when she happen to drive by the funeral home I’d call out, “That’s where Daddy lives!” She never corrected me.

Flo and her husband

Flo and husband Eddie (Beth’s dad) before he died

Our dad had switched jobs shortly before his death and had no life insurance. Flo got Social Security, but it wasn’t much. She found a job, and it was during her first summer working that I was diagnosed with Type 1 diabetes. I was hospitalized for two weeks, and Flo couldn’t miss work, but every morning and evening she’d stop to see me on her commute. At night she’d leave the hospital early enough to have dinner at home with my sisters Beverly and Marilee. Our older brothers and sisters were all married or out working, so Flo, Marilee, Bev, and I took care of the house, mowed, cleaned out the gutters, did makeshift repairs. The older kids contributed money from their paychecks, Marilee cooked for us, and on Thursday nights — before Flo’s weekly payday — we often ate what was left in the refrigerator, usually toast and eggs. But dinner was always ready when Flo got home, we never went hungry, and we lived what we considered happy, normal lives.

Beth with her sisters celebrating their mother's 93rd birthday.

Beth and her older sisters celebrating Flo’s 93rd birthday with her. From the top (of the stairs) that’s Bobbie, Bev, Cheryl, Marilee, Beth, and of course Flo.

Flo never complained about things being hard or unfair. She did complain when we didn’t do our chores or if we fought over dishwashing duty or messed up what she’d just finished cleaning. But she never told us we were a burden or that we’d worn her out, though plenty of evenings she just went to her room and lay down. When we went in to ask if anything was wrong, she’d say, “No, I’m just resting my eyes.”

Years later, after losing my sight, I was visiting our son’s classroom and another young mother struck up a conversation with me. Eventually we got around to what my family had been like when I was growing up. “Oh, so that’s where you get it,” she said after I described Flo.

“Get what?”

“Your courage,” she answered.

I was flattered but had to chuckle. Flo would have been embarrassed. She didn’t believe she was being courageous. She saw her life in simple terms: she did what she had to do. And I realized that I look at my own life that way.

Flo looking out a window

Flo when she was in assisted living in her 90s.

Flo could have never known I would someday lose my sight, but her work ethic, her determination not to complain, her perseverance and her appreciation for those around her served as the perfect role model for her children, especially for the daughter who is writing this blog post.

No one can predict what will happen to their children, but giving them a first-hand look at hard work, determination and love can sure help brace them for whatever comes their way later. Flo died a few years ago, but her spirit lives on. I write this Mother’s Day post in her honor. I was lucky to have her.

More posts about motherhood:

 

Let’s Talk About Senator Duckworth and Motherhood

An official portrait of Senator Tammy DuckworthWith all the hubbub the past couple weeks about our Illinois Senator Tammy Duckworth (pictured right) casting a vote on the Senate floor with her newborn baby in her arms, very little attention was given to the fact that Senator Duckworth is a mother who has a disability.

And I kind of like that.

Senator Duckworth’s disability is not invisible – she’s a double-amputee veteran who uses a wheelchair. My disability isn’t invisible, either. I am blind, and when I was pregnant with our son Gus in 1986 I received as many awkward comments from others as I did congratulatory wishes. My husband is sighted, but when I was out without him during my pregnancy, complete strangers would ask, “The father can see, right?” Other times we were asked questions like “Blind people are allowed to have babies?” “The baby will be blind, too?” “Are you going to keep it?” “The hospital will send someone home with you guys to help once it’s born, won’t they?”

We’ve come a long way in 31 years. I kept waiting for something to come out in the news about Senator Duckworth being a disabled mom, but never heard it mentioned. I heard plenty of ageism (Senator Duckworth is 50 years old) and plenty of sexism (she’s the first Senator to give birth to a baby while in office).

The only reference to ableism I found was in an Associated Press story reporting that some senators were privately reluctant to allow Senator Duckworth to have her infant daughter with her on the Senate floor: They suggested she vote from the cloakroom instead. From the story:

Senator Amy Klobuchar’s answer to that suggestion noted that Duckworth lost both legs and partial use of an arm in Iraq, and mostly gets around by wheelchair. “Yes, you can vote from the doorway of the cloakroom, but how is she going to get to the cloakroom when it’s not wheelchair accessible?” she asked.

Senators are not allowed to phone in their votes. New fathers in the Senate who have brought their children along to work have voted from the cloakroom doorway in the past, but they won’t have to do that anymore: The rule change Senator Duckworth proposed applied to fathers, too. Discussion on the rule change split her colleagues more along generational lines than partisan ones, and now fathers and mothers are allowed to bring their infants on to the Senate floor with them.

A lot has been said about how Senator Duckworth’s historic moment may change the way employers across the country look at accommodating new parents in the workplace. My hope is that it also marks a time when Americans are looking at people with disabilities as good employees, and good parents, too.

Thank you, Tammy Duckworth. Happy Mother’s Day!

 

What Happened When I Stepped Out Of My Comfort Zone For A Night

Last year Easterseals published a guest post I wrote called How One Student Who is Blind Planned the Perfect Date. Our perfect date didn’t work out that time, unfortunately.

That's Alicia and Joe sitting side by side on a beige couch at Christmastime. They started dating three years ago, on April 24, 2015.

Alicia and Joe.

Joe and I had tried to plan a trip to Andy’s Jazz Club in Chicago last year for our second anniversary, but when it didn’t work out, we tried again for this year. We have been planning this since December, so needless to say, I’d been looking forward to this for a very long time.

The day finally arrived. I was up early and scheduled our ride from campus to the Elburn train station, and I called Flash Cab Chicago to schedule two rides with them — from the train station to Andy’s, and from Andy’s back to the train station later that night. I informed them that we are both blind, so the driver would have to come get us. The dispatcher added this to her notes, and I could tell from her tone that this was nothing new to them.

The trip from Northern Illinois University to Elburn was nothing new to me. We got to the station just as the train was arriving; I could hear the loud train bells. The driver led us to the platform and onto the train, directed us to our seat, and told us to have a good day as she descended the stairs off the train. And as typical with traveling with Joe, the excited chatter started.

The hour-and-twenty minute train ride didn’t feel quite that long. We pulled in right on schedule, and my excitement quickly turned to nervousness. Here was something unfamiliar to me that I was not exactly confident about: getting off the train and out of the station. I was glad I’d scheduled our pick-up time with Flash Cab for 30 minutes after our train was due in Chicago. I overestimated the time it might take on purpose, just in case the train was late. Or in case it took us a while to get out of the station…or in case I needed to make a stop. Which I did.

I wasn’t sure who to ask. What if someone led us to the restroom and left and we couldn’t find someone to lead us back? I started voicing my worries out loud and, as per usual, Joe calmly said his favorite thing to say when traveling: “We’ll figure it out,” with a reassuring hold onto my hand.

The conductor guided us off the train and asked what we needed. “Well, our cab isn’t coming for a while, so I was wondering if you had an employee that could direct us to a restroom,” I said. I didn’t want to assume he would do it when he likely had other things to attend to, but he said he’d grab his bag and take us.

During the long walk to the restrooms, our conversation was all about what we were doing in the city today, how often we travel on the train, and how impressed he was by our confidence with this being our first trip to the city by ourselves. Once he’d led us to the restrooms, he told us he had another train to get to and informed us that a security guard would be there to lead us the rest of the way. He introduced himself and shook both our hands and departed.

As promised, the security guard was there when I exited. He led us to the exit on Madison Street, where I then received a text that our cab was on its way. There was more excited chatter (I said something like, “Can you believe it? We’re in Chicago!” like I’d never been to the city before in my life and was an out-of-state tourist.)

I received another text saying the cab arrived, but decided to stay put. I always let drivers come to me; I never try and find them. The driver addressed me by name, so I knew it was the right person.

The ride to the jazz club was short, and we arrived just as the dining area opened. Someone was there to greet us, and I gave them my last name for the reservation I had made two weeks ago. He led us to our table, and I immediately took note of the instruments I could hear to our right…very closely to our right. We were sitting right by the band!

Our server came by and asked if we needed help with the menus. Joe and I had done some research prior to this trip and looked up the menu online, but we quickly found out it had been updated since then. We narrowed down our options to pasta, and the server was happy to help.

He read everything and described it to us. He politely asked me to confirm where I got the menu online so they could update it, and I told him. We got our food right as the band began to play, so there wasn’t much conversation. It was too loud, and I was too busy enjoying the music anyway.

We spent two hours in the dining area (including eating dessert, of course), before we asked our server to lead us to the bar, where we quickly struck up conversation with a lady sitting next to me. She was visiting Andy’s Jazz Club for the first time, too.

The bar area was a little better. It was quieter so we could actually talk without having to shout. As soon as I got the text that our cab was on the way, we stood up and someone came over to help us. (People were watching out for us all evening.) They led us out the door just as the cab pulled up.

The cab driver led us into the station and found a security guard, who proceeded to use his radio to request assistance. Someone came and led us to the ticket agent, and once we had our tickets, the employee who led us to the agent then led us on the train.

Unlike the train ride to Chicago, the train ride back from Chicago was quiet. We were both exhausted, so we dozed off, but in-between sleep sessions we had a little bit of conversation. I couldn’t have asked for a better person to travel with and share the last three years of my life with. We talked about doing this as a yearly tradition — that’s how much fun we had.

Our train pulled up right on time, and my cousin met us at the platform to drive us back to campus. I can’t describe the feeling of accomplishment I felt at the end of it. I stepped out of my comfort zone and tried something new, and I knew I’d go back and do it again.

More posts by Ali:

 

 

What Goes Into Planning A Date Night To A Jazz Club?

That's Alicia and Joe sitting side by side on a beige couch at Christmastime. They started dating three years ago today, on April 24, 2015.

Alicia (left) and Joe (right)

Today is a big day for our young blogger Alicia Krage and her boyfriend Joe: it’s their third anniversary together. They started celebrating this past weekend, traveling on their own Sunday from Northern Illinois University in DeKalb (around 60 miles west of Chicago) for a romantic dinner and a night of live music at Andy’s Jazz Club in downtown Chicago. Ali and Joe are both blind, and while they’ve had experience taking commuter trains in the suburbs, the two of them have never taken a train ride to have a date in Chicago before. Ali wrote me last week for information, and I thought her questions — and my responses — might give Easterseals blog readers an idea of some of the things people who have visual impairments have to consider when traveling somewhere new.


Ali: From your experience with Flash Cab, how much time in advance should I be calling them? Keep in mind it’ll take us a little while to get out of the station.

Beth: You can either call them before you leave (even from DeKalb, if you’d like) and give them a time you want to be picked up at the station, as in, “Pick us up at 4:15 p.m. today” or you can call them when you’ve finally arrived outside the station and are at a spot where they can pick you up. Either way, tell them that both of you are blind and that the driver will need to call out to you so you know she or he is there. I’d take the first option, as you will be so busy negotiating the train station that you won’t want to stop and call for a cab. Just schedule the pick-up at a time that allows you and Joe with lots of leeway to get through the station and outside to meet the cab.

Ali: Is there only one exit?

Beth: I think there is only one. It lets you out on Madison Street. A lot of people on your train will be going to Chicago so I’m sure they’ll be more than happy to give you directions if you need them. You could ask the conductor, too, but it’s unlikely the conductor can leave the platform to guide you all the way through the station to the exit.

Ali: We’ll be taking a cab back from the jazz club to the train station, too. In your experience taking a cab to the train station, was the driver kind enough to lead you inside and to an agent to request assistance?

Beth: No. Too dangerous to leave their cab outside unattended that long. If it’s Flash Cab, though, I bet you the driver will at least lead you to the door to get into the train station. Last night I had to take a cab to WGN Radio station, it’s located in the huge Tribune Tower and the Flash Cab driver left his cab to lead my Seeing Eye dog Whitney and me right to the correct door to the lobby there.

Ali: What has been your experience with getting back to the train station? Give me as much detail as you can.

Beth: If the cab driver lets you out at the train station, there will be lots of commuters coming in and out. I’d say there are a bunch of revolving doors, and then wayyyyy to the left of all that swishing noise of those doors swirling around you can find one handicapped accessible door (if you are afraid of revolving ones) with a button about elbow-height on the right hand side of it that you need to push so it opens for you. My experience is that lots of people will ask you if you need help, they always notice me if I’m there, especially if I make a point to look a little bewildered. The inside lobby is pretty huge, I’d ask for help in there, too. Ask them to get you to the ticket office, do this even if you already have a ticket for the train. When you get to the window where people buy tickets, tell them you need assistance to get on the train. They’ll have an official worker get you on the train, it’s very reassuring to do it that way because then you know for absolute sure that you are on the train you want to be on.

Ali: When should we schedule our ride back to the train station? I don’t know how loud Andy’s is, so I’m not sure they’d hear me. Anything is helpful!

Beth: This is another reason I like Flash Cab. In addition to their well-deserved reputation for welcoming — and understanding some of the needs of — riders with disabilities, you can book a round trip with them when you call in the first place. So let’s say you call from DeKalb to arrange your ride from the western suburbs, and you tell them you need a ride from 500 W. Madison (that’s the address of Chicago’s Ogilvy Transportation Center) at 4:10 pm, and you’re going to 11 E. Hubbard (that’s the address of Andy’s Jazz Club). Once they get all that information written down, you can tell them you’ll need a ride back to the train station later that night. They’ll book that ride right then, too. The jazz club isn’t terribly far from the train station, but its likely traffic will be heavy on a weekend night. I know you prefer getting somewhere extra early (over fretting about being late), so I’d say book the cab ride back to the train station so that the cab picks you and Joe up at Andy’s 45 minutes before your train leaves from Chicago back to the western suburbs. Bonus: Flash Cab will phone you to let you know when they’ve arrived and are waiting outside for you. That means you and Joe could put your coats on and all that stuff and then just stay inside listening to jazz until you get their phone call.

Back to me. Once Alicia has recovered from all the celebrating, she’ll write a follow-up blog post here about how she and Joe fared at the Chicago jazz club Sunday — stay tuned!

 

Twenty Minutes

Guest blogger Keith Hammond is back! Keith is a manager at the adult day services program at Easterseals Serving Greater Cincinnati, and he’s the father of two children on the autism spectrum. He’s written a number of poignant posts for us before, and I’m delighted to have him back with another one.

by Keith Hammond

Keith and his kids

Keith with his daughter and son

Recently, my wife and I took our son, Steven, to meet with a speech therapist he last saw in 2014. We reconnected with her on Facebook, and found out she was open for some sessions.

Steven has autism. He is non-verbal and communicates by RPM or Rapid Prompting Method — a board with the alphabet on it prompts him to respond and spell words to communicate. RPM is a relatively new technique; few people are adept at it.

Even with this tool, though, Steven has to feel some sort of a connection with people before he’ll communicate with them. Often, and with no pattern we can find, he chooses not to communicate at all. Even as his family, complete thoughts and sentences are something we rarely get. We usually only get simple “yes” or “no” responses, and we consider them as beautiful gifts.

As such, we re-engaged this speech therapist. At the first session, Steven and the therapist picked right back up communicating as if the absence had been four minutes instead of four years. It was great to watch — something we rarely experience.

After about forty minutes of the two of them discussing a history lesson, the therapist stopped and said, “We have twenty minutes left in the session; is there anything you all want to ask him?”

That really hit me. Twenty minutes. Think about that for a second. If you and your 17-year-old son had almost no communication, and then all of a sudden you were given twenty minutes to communicate… what would you say?

It’s a question most people never have to deal with. It’s a question so powerful, my mind darted about, jumping from one thought to the next in a song-like trance. After 17 years, there could never be enough time to ask him everything I want to know. Instead, and for reasons I cannot explain, a sampling of the questions took shape in a humble poem:

Would you like to have more friends?
Why are you so scared of the cat?
Do you like your summer camp and therapy?
Or could you do with less of that?

Are there shows you want to see on TV?
Are there certain songs you’d like to hear?
What’s your greatest, secret passion?
What’s your deepest and darkest fear?

Are there cities and states you’d like to visit?
Are there special sites you’d be excited to see?
Do you even know what autism is?
Would you like to ask God “Why Me?”

Are there actions we can do to support you?
Can we remove barriers that cause you strife?
What else can we do to make things better?
How can we help you have a happy life?

Would you like a girlfriend of your own?
Someday, would you like a kid or two?
What do you want to do after high school?
Is there a job or career you really want to do?

What do you want the future to hold for you?
Where do you want to live in a few years?
What’s so funny when you’re laughing?
Is there some reason when we see your tears?

Would you like new experiences to keep you busy?
Do we help you get enough rest?
Do you know how we feel when we fail you?
Can you understand that we try our best?

Are you truly happy with your life?
Or do you feel like it’s all so unfair?
Do you know how much we love you?
Can you feel how much we care?

There’s so many things we would love to ask you.
I honestly don’t know where to start.
Most parents have forever; we get 20 minutes.
It’s enough to break the strongest heart.

Ultimately, though, even if Steven is unable to provide the answers, I believe that someday we’ll all be together in heaven, and we can ask Steven our questions there.

One nice thing about eternity: it’s a lot longer than twenty minutes.

 

Our Favorite Autism-Related Blog Posts

A teenager with an iPadI don’t know what the weather is like where you are, but here in Chicago April has been cold, cold, cold — it snowed on the Cubs opening game day! I’m blaming the weather for it taking so long for me to acknowledge here on the Easterseals blog that April is Autism Acceptance Month.

This month especially we encourage you to learn a little more about what autism is, and take a look at the stories of those who are reaching their goals — finding a job, joining a baseball team, volunteering — with the help of Easterseals affiliates across the country.

Here on the blog, we’re rounding up some of our most helpful and popular blog posts related to autism. Whether you’re a parent of a child newly diagnosed with autism, a teenager navigating high school, an adult searching for the right career track, or anywhere in between, check out our suggested posts:

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Book Review: Lisa Fenn’s “Carry On”

Two years ago, while the Summer Paralympic Games were about to start in Rio, I heard a story on NPR about two teenagers with disabilities who ended up on the same high school wrestling team in inner city Cleveland. Dartanyon Crockett was legally blind as a result of Leber’s disease and Leroy Sutton lost both his legs at 11, when he was run over by a train. The ways these wrestlers worked together and cared for each other motivated me to write a post here about cross-disability assistance.

Fast forward to 2018. While gearing up to watch the 2018 Winter Paralympic Games in March, fellow blogger blindbeader remembered my 2016 post and decided to read the book an ESPN writer wrote about those two wrestlers: Carry On: A Story of Resilience, Redemption, and an Unlikely Family. I was flattered to hear that blindbeader had rememberred my post from all those months ago, then delighted when she generously agreed to let us publish an excerpt here of the thoughtful and honest book review of Carry On that she’d originally published on her Life Unscripted blog.

by blindbeader

Lisa’s Story

This story is deeply personal. While it is interwoven with strong and sharp threads of Leroy’s and Dartanyon’s stories — and those of other key figures — this is Lisa’s story. From early childhood memories to blustering and fumbling her way to a dream job to high school wrestling matches and beyond, We get to know Lisa as a warm-hearted woman who yearns for a family. And she definitely gets her wish! We’re introduced to athletes, to coaches, to parents and siblings. We laugh, we cry, and we hope and despair. But, make no mistake, this is Lisa’s story.

Sports — The Great Equalizer?

I’m not huge into wrestling, but Lisa’s writing puts the reader in school gyms, locker rooms, and world-class sports venues. You can definitely feel her respect for athletes in their own right, though there’s a strong undertone (sometimes voiced by coaches and observers and sometimes by Lisa herself) that athletes with disabilities are not talented in their own right… they’re talented “for a legless kid” (as someone referred to Leroy). The reactions to both young men — men of colour, living in poverty, and with disabilities — are almost exclusively related to their disabilities (as many of their peers are both people of colour and living in poverty). Some are astounded that they can wrestle at all and use them as “inspirations,” others don’t want to challenge them out of fear or ignorance, and still others give them the respect of laying it all on the mat. And yet, it’s clear that wrestling — and Lisa and ESPN’s exposure — gave both Leroy and Dartanyon opportunities they otherwise wouldn’t have had.

Disability as Inspiration or Tragedy

As much as I enjoyed this compelling read overall, I had a hard time escaping the prevailing theme that disability was something to be pitied or inspirationalized. In Lisa’s career as a sports editor, she interviewed athletes from all walks of life, including a hockey player who — years before the interview — became injured and paralyzed just seconds after stepping onto the ice during his first major game (you could almost hear the sad cellos playing in the background).

Leroy and Dartanyon’s wrestling coach contacted the local newspaper to write a story about his two disabled wrestlers (clearly without consulting them); Lisa was unable to explain why she thought it was a story that needed national attention, but to her it was, so she dropped everything to fly back to her home city and interview these kids. When the resulting ESPN story aired, the resulting letters and responses left this reader with the distinct feeling that Leroy and Dartanyon were meant to be viewed as recipients of generosity and catalysts for people to look outside themselves, rather than talented athletes in their own rights.

And Yet…

No one can ignore the confluence of race, poverty, and disability, and how Leroy and Dartanyon’s families — neither of which were what many would consider “stable” — shaped their high school and college/university experiences. Dartanyon, in particular, frequently refused to be “pitied” as a blind guy, even though he could’ve made use of adapted services, because he didn’t want anyone to treat him differently. Leroy didn’t have the luxury of being able to blend in, but it is clear that his school and training environments are not well-equipped for many students (lack of uniforms and sports equipment) and definitely not set up with wheelchair-accessible buses or classrooms.

It’s hard to look away from the reality that many cards are stacked against these young men’s lives and journeys. Lisa is tireless in her desire to provide for Leroy and Dartanyon, even as her adopted and biological family with her husband keeps growing. It’s heartwarming and frustrating and an important conversation — nature and nurture and empathy and personal responsibility. It made this reader uncomfortable, and maybe that’s a good thing.

Conclusion

This book is part memoir, part sports journey, part family history. There are some deeply uncomfortable mentions of ableism, racism, and inspiration porn (based on the depiction of the ESPN piece, “Carry On”, this reader has no desire to see it). And yet, this autobiography is compulsively readable, uplifting in places, and thought-provoking. It’s definitely worth the read.