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.

 

Reasons Why We Need to Give Picture Captions an Upgrade

fingers touching braille on a screen reader device I am pleased to introduce Bridgit Kuenning-Pollpeter as a guest blogger today. Her work has appeared in 13th Floor, Breath and Shadow, Misbehaving Nebraskans, and many other publications, and her guest post today discusses inclusion and assistive technology. She lives in Omaha with her husband and two sons. “They provide endless material for my writing,” she says. “When they give me the time!”

by Bridgit Kuenning-Pollpeter

My fingers manipulate keys, navigating Facebook. Arrowing down, the cursor lands on a picture and I hear, “Two people and a Baby.”

Great, I think, no context. I continue to arrow down, finding another picture. This time, the electronic buzz of my computer’s voice says, “Man in sunglasses.” Again, zero context for me.

Fifteen years ago, I became visually impaired. I transferred my visual understanding of the world into a non-visual medium. To use a computer, I now use a program called JAWS, which is a text-to-speech screen reader. It reads whatever the cursor highlights, allowing me to still do email, Google-search, write and of course, shop! However, if pictures and graphics are not properly captioned, I have no clue what they are.

When submitting my written work to publications, I only consider those that have online access. Publications with easy navigation for my screen reader provide me with the same opportunity sighted writers have to read pieces and study submission guidelines.

Since becoming blind, my life does not feel less than, as if I’m missing out on something. I do have to navigate the world non-visually, though, and that is made more difficult when accessibility is not a factor.

Some platforms have created generic captions that interact with screen readers, but they provide bare-bones details. Example: if a picture is of a group taken outside, my screen reader will likely say, “Several people in nature.” I have no clue what is in the picture, or what kind of nature scene it is. I don’t need a dissertation on the pic, but, some context and brief detail is good.

If posting a photo of you and your baby, JAWS might tell me, “Woman and baby.” I want some extra detail to paint a visual in my head.

Rather than help, generic captions like the ones above just make graphics pesky, uninteresting, and not-useful pieces of information. Placing a caption under pictures and graphics (and providing a brief description of content if the formatting is experimental) allows people with visual impairments to have equal access.

As a nonfiction writer, I write about the world, using my experiences to address discrimination, isolation, acceptance, breaking stereotypes, usually in context to disability. As a writer, I participate in classes, retreats, conferences and workshops, and often, we are given very visual exercises.

Recently, I was asked to create a visual memory map. This emphasis on the visual is prevalent in the writing community, but thinking of non-visual means to achieve writing goals is a good sensory exercise for all writers, not just those of us who are blind.

I ended up writing a timeline with descriptions of place instead of drawing a map. Having been sighted for twenty-two years, I can recall visual memories in my mind, but creating them on a piece of paper is difficult.

While I’m actually still a visual person, constantly creating visuals in my head, and while I think visual references can be great and beneficial for sighted writers, I’m also now in this other world where non-visual means of accessing the world make more sense and are much more helpful.

Inclusion and equality for all is a big topic these days. However, disability is usually missing from the discussion. It’s not always intentional, we just need more education about accessibility. As the artistic community moves forward, as the world moves forward, we need to consider accessibility, and make disabled people an active part of the conversation. Often, it doesn’t take much to make information accessible, but it has to be considered, then implemented.

I want to work with the writing community to bring attention to this issue and help create resolutions. The world is a better place when inclusion involves all of our voices.

A longer version of this post was originally published in June, 2019 on Brevity’s Non-Fiction blog.

 

You don’t have to be everyone’s teachable moment

Anja Herrman (at age 9) and her dad

Anja Herrman at age nine with her dad

Remember the 9-year-old who wrote a post here for Valentine’s Day years ago about how much she loves her Dad? She still does! Anja is a teenager now, and she’s back with a guest post that explains one — of many, many reasons — that is.

by Anja Herrman

My heart cracked and I pressed my head against my dad’s firm shoulder. Tears clouded my eyesight and I took deep breaths. The instant my father squeezed my arm, it all came rushing out, sobs and snot running with my speech.

Hang on, blog readers. You’re probably confused. Let me tell you the whole story.

I was in New York City to represent the KIDBOX board of directors. KIDBOX is an organization that helps parents and kids select boxes of clothing and have them shipped for kids to try on in the comfort of their own home before buying. For every box sold, KIDBOX sends a new outfit to a child in need, and the Kid’s Board works with KIDBOX to come up with meaningful projects to help spread the word about its mission to clothe one million children in need.

The instant I entered that room to meet the other kids on the KIDBOX board, I felt 17 pairs of eyes on me, burning holes in my back, watching my every move. I was the only one with a disability there.

Once I sat down, I heard whispers and snickers. “What’s wrong with her?” one kid asked. “Musta’ been in a car accident,” said another. “Well whatever it is, I hope she’s not contagious.”

How dare they insult me! I thought. It was as if tiny workers seeped into my body and began drilling holes in my heart. Nevertheless, I took the first step and continued on trying to break the ice. “Hi, I’m Anja. What are your names?”

Instantly, like I unscrewed the top off a jar of flies, the whispers started up again – well, most of them were whispers. “There’s obviously something wrong with her body and her mind,” one 10-year-old shouted out, her face contorting into an expression of rage and anger, a scowl apparent on her lips. “Plus she can’t be that smart, she’s in a wheelchair.”

Wait, what did she say? I thought. My brain just couldn’t process her words. Once it had, I began to crack. Tears came to my eyes immediately.

Although I fought and fought the stinging burning tears, I couldn’t help it. My one small whimper must have actually inspired the teacher to say something. “Hey,” he said. “That wasn’t nice. My mother was in a wheelchair and she was a whole heckuva lot smarter than you, because she was actually a good person.”

WOW! Didn’t this teacher realize that being mean back to this bully just reinforces her rude behavior? His story about his mother did little to ease me, my tears were flowing in earnest now. I bolted out of the room and made a beeline for my father, tears making rivers as I went.

“Daddy!” I cried. That was all I could get out. He understood. We locked ourselves in a bathroom stall and he waited for my tears to stop.

“Kiddo,” he said quietly. “What’s wrong?” I lay my head against his cotton shirt, which was already damp with the first wave of tears.

“Out there, kids were teasing me. They were attacking my integrity!” I said in a voice even quieter than his.

“Well, let’s go out there and show them they’re wrong!” he said.

I shook my head no. Why do I always have to be the bigger person and teach everyone everything? I shouldn’t always have to do that. “No Dad!” I said furiously, edging to the door, and gripping my purse so hard my knuckles turned white.

“Anja!” Dad said, placing a hand on my arm. “Why don’t you want to go out there?”

I was exasperated. “Dad, I do not have to go teach those kids ANYTHING. They are jerks.”

“Anything else?” my dad asked. And in fact, there was something else I wanted to say.

“I do not have to be everyone’s teachable moment just because I have a disability.”

And with that, my dad threw his hands up in defeat. “Alright, you don’t have to go back,” he said, tapping his phone. “We have to go back to the hotel anyways.”

“Could we maybe go to Times Square afterwards?” I asked, giving him a weak smile. “Maybe,” Dad answered, giving me a small smile of his own.

Later that night, as I was surfing through Broadway clips, Dad came and sat next to me. “Look, Anja, you’re right. I am sorry those kids were jerks. It’s not always going to be like this. But you know what, you probably taught them something by not going back in there,” he said. “I’m proud of how you reacted and I really do think you made the right decision.”

I laid there, momentarily stunned, too surprised to even move. Finally, at least my arms worked. I leaned over and gave him a hug. He chuckled and said, “So, what do you say? Let’s go hit Times Square.” I grinned and grabbed my purse.

As we walked out of the hotel, I realized we’d both learned a very valuable lesson that day. Just because you have a disability, that doesn’t mean you have to be everyone’s teachable moment.

 

How My Family Helps Me Feel Included

For those of you who don’t know (I don’t think I’ve mentioned it in previous posts) I’ve been blind practically my whole life. I had vision for the first month, so obviously I don’t remember that. This is the life I’ve known for 26 years, and for the most part, being blind isn’t a hindrance for me. I’ve always believed I can do almost anything anyone else can — partly because that’s how I was raised, and partly just from putting myself out there and experiencing new things.

Having a disability can sometimes make you feel excluded, like you don’t fit in. Everyone is doing these cool things, watching these cool movies, going on these trips, and you can sometimes feel like you can’t do those things. Luckily for me, my family has always included me in movies, activities, and games. I rarely had to opt out of a game because I just wasn’t able to play it.

When going to see movies, I always request a descriptive audio headset. This is a narration of what is going on in the movie when there is no dialog. Countless theaters have disappointed me by either giving me the audio enhancement devices for the hearing impaired (I’m not deaf, I’m blind!) or by giving me an audio description headset with dead batteries.

My family recently started going to a small movie theater they love in St. Charles, Illinois, which is a bit of a drive from where I live. The first time they took me there, the audio description headset worked perfectly. Now, whenever we go see movies, we go a bit out of the way – partly because my parents love that particular theater in St. Charles, and partly because they want to make sure I get the best service. When I’m away at college, I go to another theater near the Northern Illinois University campus in DeKalb that also gives me good service.

My parents have recently turned on audio description themselves when we watch movies at home together. My mom explained it best. “I don’t mind describing, but I don’t know what’s important and what’s not,” she said. “So it’s easier to turn it on so you know what’s important in the movie.”

Most recently, we watched the movie A Quiet Place. Most of the movie is silent, and that silence helps build suspense. My parents had already seen it, and although I wanted to watch it, I expressed concerns about using audio description. I was afraid the audio description would take away their enjoyment of seeing the movie again. My mom assured me it wouldn’t, we watched the movie, and all was good. The description did a great job at allowing a person who is blind to still feel the suspenseful vibe of the movie, and I could enjoy it just as much as my parents did.

When we play games as a family, there are several ways my family accommodates and/or adapts things for me so I can enjoy them just as much as everyone else. Some games, for example, involve drawing a card from the center, so my sister helps me Braille all the cards. Some games involve having a stack of cards to choose from. In this case, one of my family members takes me in another room and reads me 20 cards or so, and I write them down in my Braille note so I know what the cards say. It’s a small gesture, but it makes me feel included every time.

Some people really want to include me in activities they enjoy, but since they don’t have experience making things accessible, they can’t think of ways to adapt something so I can join the crowd. Admittedly, I often opt out of game nights on my floor in my college residence hall because most of the games are visual. For some reason, it’s hard to properly advocate for what adaptations or accommodations I need (or that work) to people who don’t know me very well. My family knows me very, very well, and after a lifetime (well, for my lifetime, at least!) of adapting things for me, they are pros!

It’s easy to feel a little left out when you have a disability, and there have been a few instances where adapting was just not possible and I wasn’t able to participate. But for the most part, whenever possible, my parents will adapt and accommodate what they can. My dad is the one who plans vacations every year, and he’s very good about picking activities where I can join in.

My parents made sure that from a very young age I surrounded myself with a mix of blind and sighted kids, and that meant I grew up with people I could relate to but also wasn’t sheltered and only had blind friends. It’s important to have a healthy balance. Being around other sighted people makes you feel less alone and a little more included, like everyone else.

That’s probably because, when it really comes down to it, you are. You are just like everyone else. You just do things a little differently, and that’s okay.

 

I Went To an All-Abilities Poetry Workshop, and Here’s What Happened

A month from today, on July 26, 2019 Easterseals will be celebrating the 29th anniversary of the signing of the Americans with Disabilities Act (ADA). To mark the occasion, we’ll be publishing posts throughout the entire month of July about…inclusion.

Look for stories here about experiences that taught our bloggers what inclusion is, what it means, why inclusion is so important, how times they are not included stick with them, and why that is.

As a sneak preview, here’s a post by my friend Regan Burke about a poetry workshop we went to, and the multiple benefits inclusion can bring to people of all abilities.

by Regan Burke

Regan-BurkeI wish I’d digested the dictionary definition of “somatic” before attending a community poetry writing workshop co-sponsored by The Poetry Foundation and Access Living Chicago, a non-profit organization that advocates for an inclusive Chicago that enables people with disabilities “to live fully–engaged and self–directed lives.” This summer they are offering poetry workshops free of charge to people of all abilities, and I convinced my writing teacher Beth Finke to join me at one.

I caught up with Beth and her guide dog Whitney at the door to the Acess Living classroom, and when we entered the room, someone shouted, “Hi Beth!” and it became obvious she was one of Beth’s former students. I can’t go anywhere these days where I don’t run into a current or former student of Beth Finke’s.

We sat down on either side of a young woman artfully made up with dark eyebrows, eyelashes and exquisite dark purple lipstick. Her name tag read “Stephanie” and she had a white cane leaning on her chair.

Stephanie turned to me, asked in a low voice, “Is she the author of ‘Writing Out Loud?’”

“Yes, she is. Have you read it?”

“I’m listening to it now.”

Our blue-jeaned leader identified himself as Matt, a poet and artist with an intellectual disability, schizophrenia. There were people with visible disabilities, those with invisible disabilities and those with no disabilities. Why were people there? Some loved poetry, some wrote poetry and one came because his wife wanted to be there. Matt asked what we think makes a good poem.

“That’s what I came to find out!” shouted a thin, smoker-faced man with a rambler’s hat and a long grey ponytail. He had no visible disability.

Invisible disabilities are covered under the Americans with Disabilities Act and spoken of freely at Access Living. They include conditions like chronic pain, chronic fatigue, psychiatric disorders and chronic dizziness.

Our teacher Matt, a short-haired tattooed poet, tried to describe somatic poetry as a bodily experience and used the work of poet CAConrad as examples. All his words after that bunched up together, slipped and slid all over each other like a fast-forwarded recording. Greek to me. I mulled my exit strategy.

CAConrad invented soma(tic) poetics, which involves writing “rituals” like this one Matt read aloud for us at the workshop: “Wash a penny, rinse it, slip it under your tongue and walk out the door…get your pen and paper and write about POVERTY.”

Matt instructed us to write a “ritual” like CAConrad’s. A young black man who was leaning on an elevated chair that’d been pushed into the corner asked, “Should I write for a wide audience or use my dialect?” I choked out a few deep breaths and copied the style of the CAConrad ritual. We ended by reading a few of our rituals aloud.

One woman who sat in front of the sign language interpreter described what she was hearing. Stephanie, the dark-haired beauty with the white cane, wrote about throwing her glasses out the window then frantically digging through the dirt to find them. After hearing their essays, I shared mine — I’d written about the best way to die, my expression of a whole body experience. I felt included.

A version of this essay originally appeared on Regan’s Back Story Essays blog. CAConrad is The author of nine books, and Regan Burke’s forthcoming memoir, How I Want to Be in That Number, will be published by Tortoise Books in 2020.

 

Why I’m Proud of Social Media

What does it mean to be social? In the digital age, how we interact with others has changed in many ways, but the root of socialization has stayed the same – we all need and want to have company. Maybe not every day (alone time is important), but having social connections is vital to a fulfilling life. For disabled people, building relationships with others was and is not always easy because of institutionalization and lack of access to community living, general ableism, and disabilities that make in-person socialization difficult.

Then in comes social media, changing things entirely.

Of course, Twitter, Facebook, Instagram and similar platforms come with their own baggage like trolling and cyber bullying. But the positive influence they have on my life and the lives of millions of others has been a saving grace. Being able to connect with other disabled people online means we can offer advice and support when facing ableism or health issues. It means we can still engage with others when an illness has us in bed for long hours. And it means we can show solidarity through advocacy in a more accessible way.

I have learned so much about myself and others just from interacting online; my circle of friends continues to grow.

Society often shames folks for using social media (usually on social media, which is at least humorous), but for disabled people, this is often how we get out of the house when we can’t go out. Social media makes my tiny bedroom feel like a crowded party when I get together with my friends online. Social media isn’t perfect, but neither are in-person communities – we can only continue to improve them. And to improve them, we first have to improve our offline world.

While the internet opens socialization to many, it’s also important to note that disabled people still need in-person community supports and transportation. We still like going out to the movies, restaurants, concerts, and celebrations. We still must go out for doctor’s appointments and food shopping and other chores. Social media is an outlet, but it can’t be the only one.

As we celebrate disability pride month, I want people to understand the importance of online communities and how proud I am that we’ve built these networks, especially for disabled people. Seeing people with similar experiences come together through hashtags, making videos, and sharing our stories is incredibly powerful.  

Erin Hawley is the Digital Content Producer for Easterseals Thrive, an online support network for young women with disabilities. If you would like to learn more about this program, visit our website or follow us on Twitter, Facebook, and Instagram.