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.

 

Her Stutter Made Her a Better Writer

a woman working on a laptopThe New York Times runs a regular feature called “Disability,” which it describes as a “series of essays, art and opinion by and about people living with disabilities.” The headline they used for an opinion piece they published in that section earlier this month caught my eye.

Or, in my case, I guess I should say my ear.

The opinion piece, titled My Stutter Made me a Better Writer, was written by Darcy Steinke, the author of five novels and two memoirs. I am a writer, too, and while I might not be as prolific as Ms. Steinke (I’ve only had three books published) we do have one thing in common: I, too, think my disability makes me a better writer.

In her essay, Ms. Steinke tells of her mother signing her up with a “string of therapists” during her elementary school years. She was sent to a famous speech therapy program at a college near their Virginia home when she was 13, and she says that in adulthood now her stutter is less disruptive. “The central irony of my life remains that my stutter, which at times caused so much suffering, is also responsible for my obsession with language,” she writes. “Without it I would not have been driven to write, to create rhythmic sentences easier to speak and to read.”

My blindness is a different story, but like Ms. Steinke, I credit my disability for helping make me the writer I am today. Blindness forces me to listen, a skill so helpful when writing dialogue. Medical appointments teach me the importance of providing good information, something I try to do for my readers.

Readers want to know how characters in stories respond to what happens to them. Because so many people have been curious about my blindness over the years, searching for the right words to explain how I lost my sight and how I responded to such a major change in life expands my vocabulary.

And then there’s this: my reporting comes from a different point of view.

Ms Steinke’s essay ends with an account of her preparing to record the audio version of her forthcoming book, Flash Count Diary. “Because of my stutter, I wasn’t sure that I could,” she writes. “Conversing, teaching, even reading out loud were all part of everyday discourse, but recording an audio book would take me into the world of professional oratory — a world, I assumed, from which I’d always be excluded.”

 

Does Your Personality Change If You Become Disabled?

A person holding a card with a question mark in front of their faceI was out with a friend last week who takes a healthy interest in exactly what makes people tick. She didn’t know me earlier in life, when I could see, and said she couldn’t help but wonder. “Do you think your personality changed when you went blind?”

I didn’t know what to say. I didn’t find the question offensive, I just didn’t have an answer. “You should ask Mike!” I laughed, joking that he’d probably know better than I would—Mike and I celebrate our 35th wedding anniversary this year, and I lost my sight a year after we got married.

The question has been on my mind off and on since then. What does personality mean, exactly? Does “funny” count as a personality? Does “fearful”?

Years ago a reporter at a lighthearted event I spoke at discovered that a friend in the audience had known me most of my life. “Was Beth funny when she could see?” he asked her. “Or did she get a sense of humor after she lost her sight?” The sister who is closest to me in age marvels at my ability to get around on my own in Chicago. “You were scared of everything when we were little, “ she says, describing a time she tried teaching me to ice skate backwards. “You wouldn’t even try, and now look at you.”

My friend told the reporter I was always funny in high school. That means my personality didn’t change. My sister says I’m fearless now. So maybe my personality did change.

Happy, sad, impatient, shy, fearful, curious, helpful. What characteristics describe your personality? Maybe it’s in the eye of the beholder.

And then there’s that study comparing lottery winners with accident victims. Shortly after the Illinois State Lottery started in the 70s, psychologists from Northwestern University published a study called “Lottery Winners and Accident Victims: Is Happiness Relative?

The researchers asked 22 winners to rate their happiness months after the initial elation of winning the big bucks. In addition, they asked the winners how much pleasure they were taking in mundane activities like reading a magazine or meeting friends for coffee. Then they interviewed people who lived in the same neighborhoods as the winners but hadn’t won the lottery. The results showed that months after the winners were announced, the non-winners were just about as happy as the lottery winners. The so-called losers were finding much more pleasure in everyday activities than the winners were.

The researchers also interviewed people who were paralyzed in accidents that same lottery year. Their research found that after initial sadness, the people who were paralyzed rated their pleasure in everyday activities slightly higher than that of the lottery winners. Their life satisfaction was nearly the same.

That study makes a lot of sense to me.

It’s Wednesday. I listened to NPR while I finished the cup of coffee Mike made for me this morning. Once I was done, I flipped on my talking computer, sent out a few messages, helped a writer in one of the memoir-writing classes I teach send a manuscript out to a potential publisher.

That done, I collected myself, put on a raincoat, buckled my Seeing Eye dog Whitney into her harness, and we headed out to the bank. Two of my sisters are visiting this weekend, which means a lot of eating out, hearing live music, catching the train to the suburbs to visit family there, checking out some museums – I’ll need some cash!

It stopped raining while we were out, so Whitney and I took the long way home, listened for birds, and smelled the lilacs.

Back here in the apartment, I’ve been spending the past couple hours on my job for Easterseals, including writing this post! Then time to shower, dress, check to make sure everything I need is in my bag, and head downtown to lead my memoir-writing class.

I’ll feed Whitney when we get back, then maybe listen to a book while I get ready for the happy conclusion to the day: we’re heading to the Gene Siskel Film Center to see Amazing Grace, a documentary about Aretha Franklin.

So did my personality change when I became disabled? I will say this: the way I move through space has changed, and the way I take things in has changed – I use my ears, my sense of smell and my sense of touch instead of my eyes. Does “active” count as a personality? I was active when I was young, and I’m still active now. As Aretha would say, “Rock Steady!”

 

The Problem with Disability Representation on America’s Got Talent

Recently, I started a vlog on YouTube sharing my disabled self with my viewers. It is empowering for me to express who I am unabashedly and under my own terms. Even though I can’t physically take the videos myself, I have full control over direction, editing, and scripting. Disabled people rarely have this control in mainstream media, though. Our stories, even on reality shows, are often filtered through an abled and frequently ableist lens.

Even when media interviews or features actual disabled people, or consults with us, we are still edited by someone who is probably not disabled themselves. Last week, America’s Got Talent contestant Kodi Lee, who is blind and autistic, shared his amazing talents with the audience. There is no denying he deserved all the “yes” votes from the judges. In an interview after the show, Kodi expressed his excitement at receiving the honor and how he hopes to perform for millions more.

Seeing a disabled person on TV achieving goals is always a good thing. It’s important to see people like you represented and celebrated rather than ignored or demeaned.

So why did the AGT clip of Kodi’s experience not sit right with me, or with numerous other disabled advocates? For many of us, we just want others to view our full selves – as people with talents who are also disabled, rather than talented “despite” our disabilities. We shouldn’t be reduced to feel-good stories when we share our talents. We shouldn’t be met with tears of pity or surprise and “aww” moments when we take center stage. We should be judged the same as abled performers.

I don’t know Kodi’s thoughts about how the show portrayed him. I just wanted him to know that he has value and worth for simply existing, and his talents showed us his heart in the similar way Mariah Carey singing “Hero” makes me tear up.

Some singers show you their soul through their vocals and Kodi has done that. His disabilities have shaped who he is and influence his artistry. He’s not “overcoming” his disabilities when he performs – he is showing them to us alongside his music. And that is a more powerful narrative the show could have pushed rather than the trite saccharine of inspiration. We can and should celebrate disability, not avoid it.

We need more disabled producers, directors, editors, and writers behind the scenes to avoid these tropes. Telling our own stories ensures we are seeing the whole person rather than what abled people want to see or what they expect. Sharing myself on YouTube and seeing other disabled creators on the platform helps disrupt the stereotypes and stigma of disability. I hope, one day, Kodi gets to share his story in his own way too.

 

Parents of a Child With Spina Bifida Bought a Pub. This Is What They Did With It.

a cozy pub with wooden tableI subscribe to a podcast by the British Broadcasting Corporation (BBC) called Ouch. It features BBC journalists with disabilities who bring their personal experiences to the table, and it can be downright charming to hear them talk about disability in their lovely British and Irish accents. It’s intriguing, too, to hear how British and Irish laws regarding disability sometimes differ from ours here in the United States.

I was all ears last week when BBC reporter Emma Tracey interviewed Kerry Mathie, whose 12-year-old son has spina bifida and uses a wheelchair. “Ben is absolutely fanatical about live music, he loves concerts and things,” said Mathie, adding that venues in England are often upstairs. “We struggle to go to concerts with him being in a wheelchair.”

Many venues won’t allow a 12-year-old inside, either, but local pubs are different. Ben has been going to a neighborhood pub with his parents and brothers and sisters to hear live music for years now, but when that pub went up for sale, plans were in the works to destroy it. “It was our local pub anyway, but it was being sold to building executives and they were going to knock it down and build whatever, flats and things,” Kerry told the BBC, noting that they’d never owned a business like that before. “We didn’t want Ben to miss out. It’s his passion, we’ve been going to this pub ever since he was about six or seven to listen to the live music and we just wanted to carry it on, so when we were given the opportunity to take on the pub ourselves, we jumped at it.”

You read that right. Ben’s parents bought the pub.

The Harrow Inn Free House is located in Boughton in Nottinghamshire, and Ben works there as the pub’s entertainment manager. “It’s something he’s going to do when he’s older, too,” his mom said.

Journalist Emma Tracy got Ben on the phone and when she asked him what an entertainment manager does, I swear, you could hear the 12-year-old shrug. “Sorts out what we have every weekend.” When she asked whether he uses social media to learn about new bands, Ben’s mother piped up. “Yeah, he goes on to mine or his dad’s Facebook, because he’s too young to have social media, and he will have a look and see local bands.” Kerry’s mum took over for a bit then, directing the next questions to her son. “Don’t you? You listen to them?”

Again, you can hear the shrug in his answer. “Just watch them on Facebook and that,” he says. “I message them.”

The lilt in Kerry’s voice during the podcast tells me that (outside of his job at the pub) she regards her son’s attitude as that of a typical 12-year-old. “It’s not just for Ben, it’s for the rest of our children as well, and for families in the area,” she says, crediting simple things they do to make the pub welcoming to all.

“Making sure that there’s plenty of room to get round tables, making sure that they can get to the bar, and just the general persona. You know, you just treat everybody the same,” she says. “It’s getting round word of mouth, not only are we wheelchair friendly, but we are accessible to everybody. Everybody is welcome, it’s as simple as that.”