Don’t Miss Out on these Discoveries During IEP or Parent Meetings

I am delighted to have Patty O’Machel back with us as a guest blogger. Patty is a writer, special needs advocate and mom. Last year Patty launched a business called Educating Outside the Lines, a disability awareness project that stems from her core belief that “kids with disabilities are just kids.”

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

It’s that time of year, when the days of swimming and sleeping in rapidly turn to school supplies and meeting new teachers. For my typical kids, this looks one way and has its own fears and uncertainties and anticipation. But for my daughter with a disability, and for me as her parent, it has a very unique set of stresses.

We are not only meeting her new teacher or teachers, but also a host of ancillary people who all have an investment in her school day: aides, resource teachers, physical therapists (PTs), occupational therapists (OTs), and technology professionals. Every year we are faced with not just one new teacher, guiding her day, but a host of disciplines and professionals whose jobs intersect and complement one another for my daughter’s overall success. There is a team to work with her, in and out of her classes and life all day, every day.

As a parent, this whole coordinated dance can be incredibly overwhelming. We head it off by starting the year before, arranging meetings and planning sessions, but it still can feel like you, as your child’s head CEO, are conducting an orchestra when you can’t even read music.

I think back to being a newbie parent, when I sat at my kitchen table with all of the Early Intervention professionals around me, worrying about whether they liked the muffins I set out while also trying to focus on every word and acronym they said about my daughter — I felt like I had been dropped into a new country and didn’t know the language. I remember clearly feeling my heart break a little more each time, as they went around the table talking first about all of her strengths…and then about each of her weaknesses.

I, like all special need’s parents, know this drill. You can’t actively listen to the strengths when you know the other shoe is going to drop, and the weaknesses are coming at you. The gap between my daughter’s strengths and weaknesses grows wider every year. By the time we got to 8th grade, I asked if we could just start with the weaknesses first, and then talk about the areas of growth.

I am not a teacher, an educator, a physical therapist, or a reading specialist. My education and background professionally did not prepare me for this role, but I still do it, and I think I do it really well. I may not have a degree in special education, but in many ways, I consider myself an expert!

So with that expertise in mind, I propose a new way of doing parent meetings and IEP’s. Let’s start with the negatives, and then spend the rest of the meeting talking about areas of strength in my child and how we are going to foster those super powers and stoke the flames so he or she can be successful.

I recently met a young man with dyslexia who was reading with the second graders when he was in fifth grade. It wasn’t until a special teacher saw the magnitude of things he “could” do, and began to foster those unique strengths, that he began to be seen as the brilliant young man he is, gifted in robotics. For too long he had been seen only for his weaknesses. Focusing on his host of talents and super powers gave him the tools he needed to succeed in his unique way. He has just started his first year at a prestigious university with a full-ride scholarship, based on his strengths, not on his disability.

It took a teacher to look at this young man’s path to success differently, as unique as he was, and foster that flame. It took what is a rare approach in education, looking at all a child can do and not just what they cannot do. I know that educators, administration, and ancillary professionals are more stressed and busy in our schools than they have ever been. Trying to teach a classroom of 20-plus students and still see the unique light in each of them is an almost impossible task, but the students with the unique superpowers are often the ones who go unnoticed. It is difficult to differentiate a child who cannot keep pace with the pack and needs their own individual route to the same destination, yet each of our kids, disability or not, deserve to find that path. All kids should get the same shot at success in their own ways.

My dream for this school year is that teachers will start to look for the cape, the superpower, the hidden spark in kids who, from the outside, look incapable. That they will be willing to take the road less traveled with our kids and truly see how their unique path can lead to success.


When the Unexpected Happens While Using an Uber with a Disability

taxi-minivanSometimes I like to share my travel stories with other blind individuals. It gives us a chance to laugh off the mishaps that occur in day-to-day life — or, alternatively, it gives them permission to share their own stories, too. Conversing with other blind people about our experiences is something I really enjoy. The events can be totally unexpected, and it’s comforting knowing we are not alone in these kind of experiences.

One recent Saturday morning, I was up bright and early. I wanted to get out of the house for a bit and do some reading at Dunkin Donuts. I used Siri to ask, “What time does Dunkin Donuts open?” Siri confirmed that it was already open. Next step? Using voiceover on my iPhone to schedule my Uber. Once the Uber app gave me my driver’s name, I pasted a text I have drafted in my notes on my phone:

Just so you know, I’m blind so I won’t see your vehicle pull up. Please come get me when you arrive.

This note ensures that I am getting into the right vehicle: the driver will address me by name or introduce himself after approaching me. And so was the case on that early Saturday morning. The ride was short, and when we arrived, the driver offered to lead me to the door.

“That’d be great, thanks!” I replied. “I should be good from there.” I didn’t memorize this layout to the Dunkin near my parent’s house the way I did with the one in DeKalb (that’s where I go to college) but I felt confident I could find the counter to order. I can usually find a Dunkin’ donuts counter by listening for clues — either people ordering their drinks while I enter, or the familiar sound of the card machine.

So my Uber driver and I approach the door, and I pull on the door to open it, and…it wouldn’t budge. That led to an interesting back-and-forth between me and the Uber driver.

”Am I…supposed to push this? Am I pushing on a pull door again?” I asked, laughing. Pulling on doors I’m supposed to be pushing is more common than he realized.

The driver laughed, too. “No, you’re doing it right,” he assured me. “But it’s locked.”

“It is?” I said, surprised. “My phone said it’s open.”


I imagined the driver was looking around to see if there was a sign on the door. When he said the drive-through was open, I contemplated briefly. I really was counting on enjoying the coffee shop atmosphere for a while. There was another Dunkin Donuts pretty close, But that would involve taking another Uber back home. We were already here.

“Would you mind taking me through the drive-through?” I asked. “I mean, if it isn’t too much trouble…?” I felt confident he wouldn’t leave me standing there, but I never want a driver to feel obligated. Who knows? Maybe the line of cars was long? I understood if, for whatever reason, he didn’t want to spend his time taking me up to the drive-through. .

His reply came immediately, and there was no trace of annoyance. “Sure, I can do that.”

Truth is, I’ve had driven through a drive-through a few times before in an Uber. I hadn’t known you could actually do that until one day, on my routine trip to Dunkin, my driver asked me if I was going through the drive-through or going inside. “I’m going inside,” I told him. But then, as an afterthought, I asked, “But, for future reference, if I did want to go through the drive-through, how would I do that?”

He told me that I would just add it as a stop, and add my dorm (or where ever I was headed next) as my destination, and let the driver know I was going through the drive-through instead of running inside.

So, I did that. A few times, actually. Most of my drive-through experiences came before night classes, and I went through the drive-through that morning the Dunkin lobby was closed, too. The driver laughed about what an adventure this was so early in the morning, and after we’d determined the main door was locked, he offered perfect sighted guide on our walk back to the car.

As we headed to the drive-through, I asked the driver if he’d mind ordering for me when we got there. “I don’t know where the speaker is…I kind of, well, can’t see it.”

Note: it is not uncommon for me to lighten the mood with some blind humor — or a “blind joke” as I often refer to them.

But back to the story: my driver laughed again and agreed. As I type this now, I realize that since the microphone is typically on the left side, I could have just moved over in the back seat to that side and spoken into the microphone, but I just didn’t want to risk my aim being off. I truly just didn’t feel confident enough. Maybe this will be something I ask sighted friends or family to help me with first before I try it.

Anyway, since it was so early, there was no line. We ordered. “Thank you,” I told him, and just like that, I had my favorite drink in my hands. “What a morning, right?”

We learned that Dunkin had some unexpected maintenance going on, which is why the lobby was closed. And that is exactly why I have drivers lead me to the door rather than just dropping me at the curb and driving away. I guess you never know when something like this could happen!

Being blind, I am learning to just take the mishaps as they come and laugh them off, but I’m still working on this.

I mentioned in a previous post that I’m not a patient person. But these small events — the detours we have to take in life — are stories worth telling. Taking these detours with friends and family who exude nothing but patience and good conversation makes the story even better


You Tell Me: Is There a Completely Reasonable Reason to Allow Miniature Horses on Planes?

IdcardTravel everywhere you go with the help of a guide dog, and strangers will feed you an earful of stories about all the other service animals they’ve read about. Helper parrots pecking at shoppers in stores, comfort pigs going crazy on airplanes, a therapeutic rat that quells anxiety in his owner, you name it.

The New York Times published an article about miniature horses last week after The Department of Transportation (DOT) released new formal guidance regarding animals on planes that specifies the three types of service animals prioritized for travel: cats, dogs and miniature horses. Now strangers in elevators and at street crossings are asking me about “guide ponies,” too. From the article:

Shortly after the guidelines’ release, a photo of a small ginger horse, squeezed in front of a woman’s knees, circulated on the internet. It appeared atop numerous articles, without any sort of caption, only adding to the questions raised by the travel document: If flying horses are so common, how come I’ve never rolled my carry-on past one? How could that photo be real? And even if it is, why would you ever want to squeeze a horse in front of a seat like that?”

The article shows a picture of a couple sitting in bulkhead seats of an aircraft, the leg room in front of them occupied by a pony who is standing and lodged between their kneecaps and the bulkhead wall.

After interviewing a blind woman who uses a pony as a guide, the reporter spelled out the advantages of working with a miniature pony, noting that they are:

  • mild-mannered
  • fast learners
  • known to have nearly 360-degree vision
  • able to work three times as many years as a guide dog, thanks to a longer life expectancy

I can understand that last advantage. My own Seeing Eye dog, Whitney, is nine years old now and has lost the fervor she once had for her work. My husband Mike and I were with friends the other day, and when Mike was explaining Whitney’s upcoming retirement to them, he said, “You know, she really loved working when she was young.” Our friend responded with an understanding laugh. “Hey, so did I!”

Anyway, back to this horse thing. Horses can work longer than dogs, yes, but that’s not enough to convince me to switch to a miniature horse as a guide. Before the end of this year, I’ll be heading back to the SeeingEye to train with a new young dog.

Seeing Eye pioneers worked long and hard to open the doors and give our dogs public access. At risk of being labeled as a species-ist, I wish the DOT had limited the definition of service animals to dogs. Specifically, dogs who are public-access trained, as well as individually trained to do work or perform tasks for a person with a disability.

The description of the photo with the New York Times implies that the couple giving up their leg room is traveling together. I often fly alone with my guide Whitney, who knows not to take up my neighbor’s leg room on a plane. A 57-pound Yellow Lab/Golden Retriever cross, she was public-access trained at the Seeing Eye to sit with her bottom under the seat in front of me, and her head on my feet. On trains and buses, she sits under the bench seat. At restaurants, libraries, conferences and the like she sits at my feet, under the table.

The New York Times article reports that miniature horses stand at their owner’s feet throughout each flight. I wonder. If you are being guided by a miniature pony, Do they stand on buses, too? On trains? At movie theaters? During live performances? I have long believed that the phrase “reasonable accommodation” goes both ways. Is it reasonable to ask the person who landed that seat next to you to give up their legroom (or the entire seat, if necessary) to accommodate a pony?

The woman interviewed in the article said she “usually buys flights on short notice, calling the airline the day before to give a heads up that she will be traveling with a horse.” In the past, some airlines have told her there wouldn’t be enough room, but she is hopeful the new guidelines will discourage such behavior from here on out.

She has come up with a “tidy defecation setup” for long flights, and when she senses her miniature horse needs to go, she signals the horse to go into a deodorized bag. “I don’t want my accidents to be someone’s first impression,” she told the reporter.

The story also reports that some airport officials have asked the woman traveling for an official identification card for her miniature pony, but “unaware of any organization that offers such a thing, she and a friend eventually made a card themselves.” The New York Times article I am referring to in this post is titled “The Completely Reasonable Reason People Are Flying With Mini Horses,” but I’m not sure I get it. What “completely reasonable reason” is she talking about?


The Department of Transportation Issued New Guidelines for Air Travel with Service Animals

Photo of Whitney in harness.

Whitney’s graduation picture is on her Seeing Eye i.d. card. (Courtesy The Seeing Eye.)

Summer is drawing to a close, but I have one more trip planned before it ends. This weekend, I’m flying to Minnesota to visit relatives and I’m traveling alone with my Seeing Eye dog. On Sunday morning, Whitney will be guiding me through TSA security at Midway Airport in Chicago, to the gate, down the jetway, and to our seat on the plane.

When I was booking my flight last week, I discovered the U.S. Department of Transportation (DOT) had just issued guidelines concerning traveling by air with service animals. The guidance issued by DOT does not change the current law or regulations concerning air travel with service animals, but DOT is expected to issue new regulations for traveling with service animals in the not-too-distant future. Look for another blog post here when that happens.

For now, though, the Air Carrier Access Act and corresponding regulations are still in full force. The new guidance, called “Final Statement of Enforcement Priorities Regarding Service Animals,” tells us where DOT will focus its limited enforcement resources in response to complaints it receives now, under existing law.

For example, DOT makes it clear that it will not tolerate airlines imposing breed restrictions on passengers traveling with service animals. It also will take action against airlines that require people with guide dogs to notify them ahead of time that they are traveling with their dog (I always try to let them know anyway, just so they won’t be surprised). On the other hand, DOT states the following:

We do not intend to take action against an airline for asking users of any type of service animal to present documentation related to the service animal’s vaccination, training, or behavior, so long as it is reasonable to believe that the documentation would assist the airline in making a determination as to whether an animal poses a direct threat to the health or safety of others.

Airlines should only be asking for this documentation in specific cases where they need information to help them determine if an animal is a threat. Whitney, my nine-year-old Golden Labrador Retriever cross couldn’t look threatening if she tried. I am not expecting any problems as a result of this guidance, but who knows how the individual airlines are going to interpret this? And so, I’ll add “Whitney’s complete vaccination records and Seeing Eye ID” to my long list of things to remember to bring in my carry-on Sunday. I don’t want to risk missing my flight!


7 traits that help when you’re blind and going to college

Recently when we were talking about my goal of trying new things and going to more campus events this semester, someone said something interesting that resonated with me long after it was said: “People are scared to do things even when they can see. And then if you add your situation on top of that, it does make it a little more challenging. But it doesn’t mean you can’t do those things.”

This is my last semester at Northern Illinois University, and those words made me think of college as a whole and left me reflecting on my entire college experience.

I’ve had challenges because of my blindness. Let’s not sugar-coat that. Being blind does make college life a little more challenging. But this isn’t going to be a negative post where I talk about the negative aspects of being a blind college student. Instead, I want to do just the opposite. In this post I’ll look at the positives, the things I’ve learned. And who knows? Maybe there’ll be things you haven’t thought of!

  1. I learned a lot about self-reliance. When I was in high school (and even when I was at community college at College of DuPage) I was able to visit the campus before classes even started to get oriented. At Northern Illinois University (NIU), I have never had that luxury. The campus is a bit of a commute from my hometown for something like that, and orientation and mobility (O&M) isn’t provided by NIU’s Disability Resource Center. That means I have had to learned the routes to my classes by showing up early enough to wander the buildings myself. On the occasion I wasn’t able to show up early enough, I had to ask for directions and focus on exactly where I was, what turns I was making, and so on. Eventually I was able to memorize the routes.
  2. I learned to be resourceful. I take the bus from class to class, but sometimes the bus was late. Sometimes I had another obligation with no way to get there. Sometimes I resort to asking friends, but often times I just use Uber. My friends have their own schedule. Why should they go out of their way to lead me somewhere when I could find other ways of doing it? I learned to use other resources.
  3. I learned a lot about patience. This is still a work in progress. I am not the most patient person — I’ll admit that. But being in college has taught me that, as a blind person, I spend a lot of time waiting. Waiting for the bus, waiting for someone to ask someone else where a certain room is, waiting for an Uber, waiting to receive my list of accommodations for my professors. Things take time, and I learned early on that I needed to accept that.
  4. I learned not to rely on people too much…because they can’t always be there. I don’t mean this in a negative sense, like we don’t talk anymore or anything of the sort. I mean they’ll drop out, switch to another college, or they’ll graduate. I’m starting my last semester with very few people I know. My close friends graduated, Joe doesn’t go to school here anymore, and I lost touch with a lot of friends from past semesters.
  5. Again, I’ve learned a lot about self-reliance. While I do accept help once in a while, I know not to rely too much on it. When Joe went to school with me while we were still together, he helped me navigate the residence hall. My friends ran through routes with me when I’d get lost and asked them to teach me an alternative route, and they’d take me off campus to explore sometimes, too.
  6. I learned that in the end, it’s on me. It’s up to me to do these things, make new friends, and figure it all out.
  7. I have to work twice as hard. In high school, a teacher told me that as a blind college student, I was going to have to work twice as hard as everyone else. I didn’t know how to take that when I first heard it, but now I know it’s true. I get extended time on tests, I needed tutoring one semester, and sometimes, I need help from the Disability resource Center just to get assignments done. Let’s be honest. When you can’t see, Things take longer.

So yes, being blind can sometimes make it a little more difficult, but it certainly doesn’t make it impossible. I’m very excited to be going back to school in a few weeks and making the most of my very last semester.


Inclusion is a beautiful concept, but…

I am delighted to have Patty O’Machel back with us as a guest blogger. Patty is a writer, special needs advocate and mom .

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

As a mom, I think about inclusion a lot, and the many variations this word takes in my daughter’s life. As a simple explanation most people think of inclusion when it comes to school and their child’s academic life. School systems and advocates throw this word around a lot, and most fall on one side of the fence or the other when it comes to their feelings on whether kids with disabilities should or should not be included in the typical classroom.

I have seen firsthand the way this looks with my own child, and with other children with disabilities. My daughter is in typical classrooms throughout her whole day at school, but I have seen how some kids with disabilities are shuttled in and out throughout their school day and the strange way this looks for them. They don’t get the same consistent instruction as typical kids, and they get bits and pieces of the whole learning experience. Somehow they are expected to keep up with the lesson plans, and the concept being taught, and make connections with peers — all while not being a real part of the group as a whole. But there also seems to be a pervasive hidden attitude of “that’s ok, because they have disabilities and they wouldn’t be able to keep up anyway.”

This whole arrangement doesn’t seem to benefit the child learner. It may check a box on the IEP, but is it the best situation? Does it give that child the most complete learning experience?

I would say “no.”

My daughter is in class with typical peers throughout her day, but I would have to say that inclusion doesn’t often look like the postcard picture of peers all working together and her being included. She uses a wheelchair, so often in crowded classes she is off in the back or on the side, she is not at a regular desk, and this alone can make things isolating.

She uses her stander in some classes in order to get some stretch to her legs, so that means she is rolled in and “stands” in the back. Not a part of the group, but “in” the classroom.

When they do testing, she is removed to a quiet space or one where her scribe/aide can write or type her work. She works better in smaller groups, and has an easier time sharing her thoughts and being able to keep up — but often these situations make inclusion more difficult.

This term is commonly used speaking only about school and the academic environment, but school is not the only place where kids with disabilities can be included, or excluded. My daughter has a wonderful group of true friends. She loves them, and they love her, too. She has a blast when she is with them, but sometimes that inclusion can be hard. When they “hang out” at one of their houses, those houses are not always accessible. They might have stairs to climb to get inside, or the girls might want to hang out in their rooms or basement, both of which are off limits to my daughter. Or they will go up to town and get food or frozen yogurt, fun if you can walk up to town and get around on your own, but not if you use wheels.

My daughter’s friends never exclude my daughter, but the give and take of normal friendship and interaction is difficult when you are not there.

In order for my teenager to be included, I have to essentially be included as well to manage the logistics — and what teenage group wants a mom hanging around with them all the time?

Inclusion is a beautiful concept. To allow everyone into a group, to be equal and to have everyone have a place and a voice. The concept is lovely. The logistics are often not. Still, as special needs parents, we fight tooth and nail to have our kids be included. We want them to have the same educational experience and to achieve their true potential in everything from friendships to sports to algebra.

As a parent, I sometimes think that my view of inclusion and the school systems’ views are not always aligned. But it is something to strive for and to fight for, and to use our collective voice to have our children know true inclusion in every area of their lives.


Inclusion: It’s More Than Just Meeting the Rules of the Law or the Policy

Liz sitting at top of a massive sand dune at Sleeping Bear Dunes in Michigan looking down at the landscape below after just having crawled the entire way up. Her grandpa and aunt are standing behind her after providing some assistance with the climb.

Liz sitting at top of a massive sand dune at Sleeping Bear Dunes in Michigan looking down at the landscape below after just having crawled the entire way up. Her grandpa and aunt are standing behind her after providing some assistance with the climb.

Guest blogger Liz Davis lives in Chicago and is an UX Designer at SPR. She has used a wheelchair all her life, and her experience in dealing with the obstacles of an environment lacking accessibility has granted her a useful perspective on inclusion. We are so fortunate to have her share her story with us today.

by Liz Davis

Inclusion is often thought of as a positive word, a word that is used to inspire connectivity, community and diversity. But inclusion means something different for me than it does for my neighbor.

Growing up as a wheelchair user, I was introduced to the idea of inclusion early on in life. Inclusion was my parents not stopping me from crawling out to the backyard to play in the dirt just like my siblings. Inclusion was my mother fighting with our local school district to get a wheelchair lift so I could attend sixth grade on the upper floor instead of them moving the entire grade because of me. Inclusion was going with my youth group to volunteer to New Orleans for volunteer hurricane relief despite the extra effort needed with a wheelchair.

I’ve been fortunate to have a lot of inclusion in my life, but it is just as important to talk about the subtle exclusions that come with being disabled — especially the exclusion that occurs when inclusion is intended, the sort of thing that can happen when trying to meet accessibility standards.

College was the first time I really started paying attention to these exclusive situations. I attended a university in an old Catholic college in Iowa, and the school’s buildings had been built long before the ADA. My dorm room was accessible, I could live independently, and the bathrooms were sufficient for me. By standards of the law it was an inclusive, accessible experience.

On the other side of the coin, the dorm buildings many of my friends lived in did not have elevators, and of course they lived on the highest floors. Technically they could have just come to my dorm to hangout, but social experiences are not so structured. I lived in a single dorm, not the large suite my friends did. They would help me up to the higher floors if we planned out a time to meet, but what if I had to use the bathroom? The feeling of not being able to freely leave when you’d like is not an inclusive experience either. I’d have to find a gap in the socializing to ask if they could help me downstairs, an awkward situation to say the least. Without an elevator available, just hanging out and socializing naturally couldn’t happen. I’d often feel left out.

I never blamed my friends, but this is where exclusion hurts the most. When you can’t speak up or change anything because technically the accessibility need was met. It’s not a reasonable accommodation to put an elevator in every single dormitory for one student in a wheelchair.

To me, inclusion is considering the social aspects of an experience in combination with the physical. It’s more than just meeting the rules of a law, or policy. Inclusion is providing the environment for someone with a disability to fully experience their lives.


How Summer Camp Can Be FUEL for the Mind and Body

Sydnee with a camp attendee sitting outside on a bench. Both are wearing "camp FUEL shirts"As you read this, Easterseals locations around the country are offering summer camp experiences for children and adults with disabilities. At Easterseals Crossroads in Indiana, Camp FUEL (Fun and Unique Experiential Learning) is offered to adolescents with disabilities from age 11 through 17. Here’s a post from Sydnee Henson, Lead Counselor at Camp FUEL, about the value camp experiences have on youth with disabilities.

By Sydnee Henson

We created Camp FUEL so that our campers could interact, gain confidence in common activities, have fun and learn. Our campers spend a large portion of each camp day in the community enjoying a variety of experiences from visiting parks, eating out at local restaurants, exploring creative outlets like screen printing and spending time with peers.

Sometimes it can be difficult to find a community of people who are committed to serving individuals with disabilities, but Easterseals has done that. It is such an empowering experience to work with others who are dedicated to shouting out the worth and value of those with disabilities.

I graduated in May with a degree in elementary and special education, and I will start a new job this fall as a high school life skills teacher. Still, my connections with campers and families has kept me coming back to camp each summer.

I have one parent who consistently comments about how surprised she is that her child is not shouting at the end of each day. This camper is very vocal about her emotions, but each day, she calmly colors a picture of a girl at camp while she waits for her mom to pick her up. This same camper has grown so much from her camp orientation night a few weeks ago. Originally overwhelmed by all the new experiences at camp, she now tells counselors “change is good” with a smile on her face.

Camp FUEL fills a much-needed void in our community for teenagers. For many of our participants, it can be difficult to find activities over the summer that will be successful experiences for them. Our campers have siblings who go to overnight camps, music camps or even spend their summers working. Camp FUEL is an option where campers can have their own unique experiences, make their own memories and engage with their families when they get home about their day.

For our campers, success and accomplishment can mean a variety of things. Sometimes accomplishment is the story of a camper who made it an entire day without crying; success might be the story of someone who said thank you as he walked out the door. Seeing the faces of our parents at the end of each day is proof enough for me of every success and every accomplishment for our campers. Ultimately, having campers who don’t want to leave at the end of each day coupled with parents who are shocked by their child’s desire to stay at camp – that is a happy camp experience for everyone.



Hello out there! We’re in the audience, too!

Longtime Easterseals National blog readers might recall a post I wrote years ago about seeing plays at Steppenwolf Theater here in Chicago. Better put, feeling and hearing the plays: Steppenwolf provides special programming for plays so that people with disabilities can take them in like other theater fans do.

In the rehearsal room, four 8′ plastic folding tables have been arranged to form a large rectangle, around which are seated member of the Artistic and Accessibility teams for introductions, directors notes and a read-through of the play.
Starting in the foreground with their backs to the camera, going clockwise: Seeing Eye dog Whitney (sprawled on floor), me, Jack Miggins and Certified Deaf Interpreter Susan Elizabeth Elizabeth Rangel (all with backs to us). On the left side of the table: ASL Interpreter Lizzy Rangel and Stage Manager Casey Peek. On the far side of the table, facing the camera: Laura Alcala Baker (director), Erica Cruz Hernandez (playing Belinda) and Leslie Perez (playing Adeline). On the right side of the table, from closest to farthest away: Hillary Pearson (Producer and Audience Experience Manager), Lindsay Drexler (Caption Designer and Expert User and Consultant) and Matt Bivins (Caption Manager). Seated in the middle of the rectangle, providing ASL Interpretation: Shannoun Moutinho.

Eight years after attending my first theater touch tour,I was flattered to be asked to help with the “Accessible Services Showcase” put on late last month by the Chicago Cultural Accessibility Consortium (CCAC), a non-profit helping to make Chicago cultural spaces more accessible to visitors with disabilities. You can learn a little bit it by playing the news segment at the end of this blog.

CCAC recruited a large crew that included two actors, a director, a stage manager, a production manager, American Sign Language interpreters, captioners, and an audio describer to present a 15-minute play that offered a demonstration project of sorts, a way to show what’s possible—and how to make it real. Project Potential, a short play by Chicago playwright Isaac Gomez and directed by Laura Alcalá Baker, featured these services…all at the same time:

  1. Two American Sign Language interpreters standing close enough to the action so that people who communicate via sign language could watch the interpretation and the live action simultaneously
  2. Screens for Open Captioning set up in three different locations so no matter where their ticket was, people who couldn’t hear well could see the screens
  3. Audio description performed by a professional describer who narrates the action to people who are blind or have a visual impairment via headsets provided by the theater, working to capture each scene without speaking over lines

The Audio Description and Artistic teams in the third rehearsal. In the foreground with backs to camera: Whitney (sprawled on floor), me and Jack. Jack’s hand is stretched out in front of him, gesturing towards the director and actors gathered around the prop desk at the far end of the room. In the middle ground, Stage Manager Casey Peek watches the action from the stage manager table.

With some variation, cultural institutions that offer accessible performances usually divvy that all up: one or two performances per run that offer ASL and/or live captioning, another one on a different day with a pre-show for people with visual impairments and so on. And for most live performances, the audio describers, ASL interpreters and live open captioners are not part of the rehearsal or creative process. They prepare by previewing performances and/or working from videos or audio recordings in advance to figure out what to interpret or describe for patrons with disabilities. That means that they’re usually preparing based off an already completed product—which can create challenges, both for the quality of the services and the overall experience of the audiences using them .

But this time was different. They all were invited to attend the rehearsals. And so was I!

Add this to my vita: I am now considered an expert user of audio description of live performances, and along with other user experts who are deaf, use wheelchairs, and identify as having Sensory Processing Disorder, I was invited to attend all four rehearsals for the short play. I learned a ton being at those rehearsals, here are a few nuggets:

  • Sign language interpreters have to sort of memorize the action on stage — if they turn around to look, deaf audience members won’t be able to see their hands
  • The people creating captions during the show avoid writing THEM IN ALL CAPS because ALL CAPS CAN TAKE LONGER TO READ than words printed in lower case
  • Actors are very patient people. During rehearsals the two actors we worked with had to do short scenes over and over again so we could coordinate all the accessibility stuff going on around them
  • The audio describer’s job would be a lot easier if they could be at a tech rehearsal alongside someone who uses their services — it can be hard for someone who can see to figure out what a person who is blind can figure out for themselves.

Audio describer Jack Miggins and I sat side-by-side during rehearsals, and he whispered to me what he would say to describe the action on stage. At the same time, I told him what I could figure out on my own.

The Audio Description, Artistic and Production teams at tech rehearsal. On the right side of the frame, Beth and Jack face the action to their left with Whitney sprawled on the ground at Beth’s feet. On the left of the frame, Jason Harrington sits on the floor with his back to the camera, watching the actors work a scene. In the far background facing the camera, Caption Manager Matt Bivins uses his laptop to run the captions, which are visible on a flat-screen tv mounted above the stage.

Perhaps the best example of this was a scene where a high school principal was having a teacher sign a bunch of forms. The principal sat at a table, passed the form over to the teacher, and said out loud, “Sign here.” The teacher signed with such gusto that I could hear the ball-point pen moving across the paper. So after Jack whispered “She signs” I could let him know that (for me, at least) description wasn’t necessary.

But then there’s this: I myself can’t assume everyone in the audience with low-vision would be able to figure that out—it’s also contingent on everyone using the audio description being able to hear something that subtle. Based off their proximity to the stage and their individual hearing ability, some may not. So that’s just one of many, many factors a describer has to weigh.

The presentation was co-sponsored by Theater on the Lake, and free tickets for the June 27 performance were offered to accessibility coordinators, executives, front of house staff, marketing people, and people from the technical and artistic teams at cultural organizations (mostly theaters) from all over Chicago. They all got a first-hand look at how accessibility works, and they stayed afterwards as sign language interpreters, captioners, and Jack Miggins and I gave 15-minute presentations to give them a peek behind the curtain and learn what went on behind the scenes to make it all happen. “I wish we could be at rehearsals for every play I describe!” Jack told the audience. “It would make my job so much easier.”

A week or so after the event was over, I discovered that was part of the plan: to encourage theaters to someday involve accessibility concerns in play rehearsals ahead of time, and include accessibility as important as sound, lighting, costumes, set design and so on during the creative process. Will that ever happen? Guess we’ll just have to wait and see.

Okay, hear.


Access? Yes. Included? Not always.

A young girl in a wheelchair, arms spread wide, with a bowl of strawberries in her lapOur daughter Elena has a standing physical therapy appointment every Saturday at the Shirley Ryan Ability Lab, which is one of the top rated rehab hospitals in the world and is located just north of downtown Chicago. Fortunately, it’s only a 30 minute drive from our house.

When we pull into the covered valet station, we’re protected from any inclement weather. That means we lower the ramp on our accessible minivan, roll Elena on to the sidewalk, and hand the keys to the valet, which is only 3 dollars with a valid handicapped placard. Try finding that any other place in Chicago!

With ease, we enter the building through automated doors, navigate the wide hallways, roll over incredibly smooth floors, and ascend to the 18th floor for our regular appointment. It’s a stress free way to spend our morning and we don’t have to worry about figuring out the location of the accessible entrance, wondering if they accommodate wheelchairs, finding out if there is an elevator or lift, or checking if there are any stairs.

As July celebrates the anniversary of the Americans with Disabilities Act, it has become clear to me that most places are accessible, which is good, but few places are truly disability friendly. What I mean by this is that often institutions have a “good enough” or tokenistic attitude toward accessibility that often prevents our family from having a choice of where we enter or exit a building, where we sit, or how we ascend or descend to different levels of a building.

When we go to the movies, we sit in accessible seats, which are either in the last row or on the side. When we enter a building, the accessible entrance is seldom on the front of the building, but rather on the side or in the back, out of plain site. We often enter buildings using doors that are not automated and were it not for my wife or me accompanying our daughter, Elena would not be able to enter.

So, do we have access? Yes. Are we included? Not always. When the dignity of choosing where to enter and exit a building or where to sit is compromised, I wonder how truly inclusive our society is?

Before I had a child with a disability, I believed that our country did a pretty decent job of including those with mobility needs. However, as a parent of a child in a wheelchair, I’ve learned first-hand that there is clearly a great deal of growth that needs to happen in order to call ourselves an inclusive society.

The village we live in made the news when it decided to move the ramp from the side of one of our park district buildings to the front. Of course I applaud their efforts to implement a plan to create a more inclusive society, but I want to live in a world where this is not a headline, just regular practice.