Pokémon Go a no-go for some people with disabilities

Erin Hawley, our own digital content producer for Easterseals Thrive, today shares with us one perspective on the latest Pokémon Go gaming craze.  While it’s certainly bringing people together to socialize and game in a new and exciting way, her astute analysis points out that  parts of the game are not accessible to people with physical challenges.  

Easterseals often consults with companies to help them make their products more accessible because we find that an inclusive development approach results in better products overall.  What do you think?  We are eager to be a part of a conversation to more directly connect people with disabilities to the companies that make the things they use… that we all use.   Our hope is that this will lead to better, more accessible products, technologies and experiences, and ultimately advance true inclusion.

By Erin Hawley

erin_pokemon

Erin Hawley

I was excited for a new, free Pokémon game — until I realized it wasn’t accessible.

I don’t begrudge anyone their fun with Pokémon Go. It’s a good way to get folks out and around in their community if they have the ability to do so. Seeing strangers bond over a shared interest is fantastic. Some have said it helps with their mental and emotional well-being. But developers are ignoring a significant portion of gamers: people with disabilities. Inaccessible games are nothing new (listen to me talk about it), but we can’t accept the status quo when it increasingly and continually marginalizes us.

So, what makes Pokémon Go not accessible for me and other disabled users?

While I have the ability to leave my house, it is difficult to navigate the community in a wheelchair. Cracked concrete, lack of curb cuts and sidewalks, stairs, steep hills, dirt roads, rocky roads, sand — it’s all here, and it’s all an obstacle or completely impassable. I can’t get to that hotspot on the beach or on a hill. I can’t drive, and I rely on others for transportation — meaning I don’t get out much. I can’t go out at all on my own. I can’t carry my phone and use it independently outdoors, unless there is a table — and those things don’t grow on trees. I can’t hold the phone up to take a picture or look at what I’m doing. Add in anxiety and chronic pain, and it’s a mess.

I’ve caught a total of two Pokémon — one at home, and one at a restaurant. I haven’t left my house in five days, and I used the only incense available. There have been no recent Pokemon sightings around here since then. While many folks can walk around to up their XP, incubate eggs, and go to gyms, I’m sitting here feeling like a nerd outsider.

Of course, my individual access needs are not the only problem. There are articles out there about the developers’ silence on accessibility, about lack of VoiceOver access for blind users, and a heap of other concerns. Mine isn’t an isolated incident.

How can developers at Niantic meet these access needs? As with all accessibility, one size doesn’t fit all. Disabled gamers have myriad needs and different ways of playing/modifying their gaming experience. But start with something like free incense, allowing your character to virtually travel, and allowing VoiceOver access. What about in-game tutorials and text-to-speech? The only way we’ll get changes is if developers work with us.

Making games accessible for more people needs to start at the beginning, not as an afterthought. It starts at home, where we teach our children about disability, or where we do not harm disabled children through exclusion or oppression. It starts through education and empowering disabled children to design and develop their own gadgets or games. And it starts by collaborating with individuals who have disabilities in all areas of technology, from programmers to play-testers.

Some may say “it’s only a game” – but those saying that probably have the abilities needed to play. Yeah, it’s “only a game,” like that restaurant with stairs is “only a place to eat,” or that doctor’s office without accessible exam tables is “only a place to better your health.” Disabled people face access barriers all the time. When our methods of fun and relaxation are also blocked, it’s a hard pill to swallow.

We can’t dismiss topics like accessible gaming as frivolous, or worry that discussions like this one detract from “real issues.” The means by which disabled individuals access cultural trends or activities is crucial to disability justice. Housing, medical care, physical care, and access to voting and food are extremely important topics. But so is access to entertainment. To suggest otherwise is to make us the Other, as though we don’t deserve to have fun because we are disabled; as long as we can eat, sleep, and breathe, that should be enough.

We are part of society. One thing we need, as a worldwide community, is to dismantle how we view disability, accessibility, and technology. We also have to look at this from an inter-sectional lens; class, race, ethnicity, and gender all factor into technological and gaming accessibility.

Here’s hoping the developers of Pokémon Go take notice and join the disabled community in a conversation about accessibility. We gotta catch ‘em all, too, right?

This post was originally published on Erin’s Gimpy Geek blog.

 

And… go! Adapting Improv and learning your lines

In a play writing post we published here last month I promised a second post with more details on my failed attempt to memorize and perform a monologue without being able to see the script – or the audience.

I wrote my two-minute dog monologu on my talking computer, then listened to it line by line and repeated the lines one at a time onto a voice recorder. Throughout the week I’d listen to the recording, and I made a special point to do so before swimming laps for exercise. That way I could rehearse underwater, too.

And still, I arrived at class the next week feeling uneasy, and, of course, I flubbed my lines. So. Is it more difficult to memorize a script when you can’t read print? Would reading my monologue over and over throughout the week (rather than listening to it) have made my memorization efforts more of a success?

I don’t know.

The next class went much better. We didn’t have to hand in that assignment, we just had to perform it. The teachers wouldn’t have my script in front of them. They couldn’t know if I was memorizing or ad-libbing. Performing my piece in class that Saturday was far less nerve-racking.

Our homework that week was to choose a famous book or play or movie, write a two-minute interpretation of that work, and perform it as a play in class. The play could be a one-person show or we could ask fellow students to take parts, too.

Our class is studying the Too Much Light (TML) style. We’re creating very short minimalist plays. No costumes (actors just wear their street clothes) and no elaborate set design. Each short play starts by announcing the title and saying, “Go!” Plays end by simply calling out “Curtain!”

A teacher sat next to me to describe the action when my classmates performed their pieces Saturday. I was one of three classmates helping one writer perform his interpretation of Batman, another enlisted other students to perform her piece on Harry Potter.

I was born to play the part. Here I am with friends at a high school costume party in 1976 -- we're dressed as the characters from Wizard of Oz.

I was born to play the part. Here I am with friends at a high school costume party in 1976 — we’re dressed as the characters from Wizard of Oz.

My favorite was the two-minute interpretation of the movie Titanic: It opened with a woman sitting in a chair with her back to us, hugging herself, moaning and making kissy sounds throughout the entire two-minute play. This was a minimalist portrayal of a character making out with someone non-stop. A second actor would periodically approach the make-out artist, nudge her chair and say, “Hey!” You know, like, “Hey – I’m out here!” The make-out artist wouldn’t even look, just simply shake her off.

The actor doing the nudging happens to use a wheelchair, which, to me, made the scene even more effective. She’d roll away, come back, nudge the make-out artist’s chair, say “Hey!” and be shaken off, then roll away and come back and say “Hey!” Over and over again.

Finally the nudger showed up with a water pitcher in her lap. This time, after saying “Hey!” she poured the pitcher of water over the make-out artist’s head. “Curtain!” There you have it: The make-out artist portrayed Kate Winslett’s character in Titanic, the nudger played the iceberg, and the entire movie that won an Oscar for best picture in 1997 was over in two minutes.

I chose The Wizard of Oz, figuring I could be Dorothy, and my Seeing Eye dog could play Toto. Our TML teachers had urged us to consider the theme of the work we’d be interpreting, so my free time the week before was spent pondering no place like home, the ruby slippers, clicking three times, and Dorothy’s dance segments with the scarecrow and the Tin Man.

Which led me to wonder: Why didn’t Dorothy dance with the cowardly lion? And that’s when it came to me. The Wizard of Oz as a night at a dance club. My class mates and teachers liked the idea and had plenty of recommendations afterwards of ways to enhance the script and my performance. I’ll end this post now with my original script. Enjoy!

Scene opens with me talking to Seeing Eye dog Whitney as we walk on stage, my feet obviously hurting.

Me: Man, she really was a witch, wasn’t she?

We stop in front of the stage, facing the audience.

Me: These shoes are killing me.

I lean down to adjust them, get a kiss from my dog and stay down there to talk with her face to face.

Me: We leave the farm, head to the city, try to meet Mr. Right, and jeez. The first guy was nice and all, but boy was he dumb. The second one was so stiff, and that third guy, what a chicken. God these shoes hurt.

I fumble with the shoes and finally stand up again to face the audience.

Me: These damn shoes! They’re so tight they won’t come off…

I run the heel of one shoe off the other, obviously struggling to get that one shoe off, to no avail.

me, grunting: One!

I run the heel of the second shoe off the first shoe, obviously struggling to shove that second shoe off, to no avail.

me, grunting again: Two!

I repeat with the first shoe, trying one last time, obviously struggling, to no avail.

me, grunting again: Three!

Curtain!

 

Book review: Robert Kurson’s Crashing Through

It’s not uncommon for strangers, friends, and family to ask our guest blogger BlindBeader if, given the opportunity, she would choose to get her sight back. At this moment, science has not addressed curing the causes of BlindBeader’s sight loss. For her, at least for now, the question is moot. She couldn’t deny her sense of curiosity, however, and just finished reading a book about a true story of the uncommon transition from blindness to sight. Here’s her review.

by BlindBeader

Book coverBlinded at age three, Mike May defied expectations by breaking world records in downhill speed skiing, joining the CIA, and becoming a successful inventor, entrepreneur, and family man. He had never yearned for vision.

Then, in 1999, a chance encounter brought startling news: a revolutionary stem-cell transplant surgery could restore May’s vision. The procedure was filled with risks, some of them deadly, others beyond May’s wildest dreams. There were countless reasons for May to pass on vision. He could think of only a single reason to go forward. Whatever his decision, he knew it would change his life.

Beautifully written and thrillingly told, Crashing Through: A true Story of Risk, Adventure, and the Man who Dared to See is a journey of suspense, daring, romance, and insight into the mysteries of vision and the brain. Robert Kurson gives us a fascinating account of one man’s choice to explore what it means to see — and to truly live.

Touching All the bases

This book is a combination of autobiography and scientific exploration of vision. Kurson’s look into Mike May’s life — both pre- and post-surgery – is effectively drawn. With a journalist’s precision, he details the chemical reaction that caused Mike’s blindness, the uphill battle his mother fought to admit him into a public school, and Mike’s struggles and successes in his personal and professional life.

When Mike begins to become accustomed to his vision, it’s not all sunshine and roses; sometimes it’s incredibly frustrating to go along that journey with May and Kurson. Much of the latter third of the book details the scientific research that helped explain what he could see and why other visual input was so challenging.

Mike May: A Blind Man who can See

Kurson shies away from characterizing Mike as an angel or hero or otherwise “super blind man.” Sure, he did a lot of exciting and great stuff with his life, but it’s not framed as “despite his blindness, he…” Mike May’s curiosity of the world in his childhood and early adulthood set the stage for him to embrace the challenge of vision, and the author draws this out with particularly nuanced emphasis.

Mike May now has good vision, but it is clear that he cannot process what he is seeing the way a fully sighted person can; he is, effectively, a blind man who can see.

It is clear that Mike May was intimately involved in the creation of this book, something that’s quite rare for blind subjects of biographies written by sighted authors.

Some Drawbacks

I personally found it incredibly disconcerting that during the entirety of the book, Mike May was referred to as “May.” The reason for this is unclear to me, but even in incredibly moving descriptions of discovering new things he could see, or describing some of the challenges he faced, having him referred to as “May” made it almost seem clinical and removed.

Some of the scientific data, while fascinating, could have been included in smaller portions throughout the book, rather than all in one chunk (though I do realize that much of the scientific data Mike May discovered at a particular time in his “vision journey”). I don’t know if there’s any way to make both biography and science lovers happy, but this review is my own.

Conclusion

If you’ve ever wondered what it’s like to receive vision after nearly a lifetime of blindness, this book chronicles one man’s journey well. It’s not always necessarily a happy story, but it’s an important one.

After reading this book, I still hold the same opinion on restoring or improving my vision given the chance, but that opinion is still my own. If surgery is the answer for some, that’s terrific; if not, that’s OK, too. But Robert Kurson and Mike May have given me much food for thought.

BlindBeader is a gifted young writer who lives in Edmonton, Alberta, with her husband, 3 cats and guide dog Jenny. You can read a longer version of this review – along with her many other thought-provoking posts — on her Life Unscripted blog.

 

This July, I celebrate interdependence

Erin Hawley outside on a sunny day

Erin Hawley

It all started with an allergic reaction. I’m sensitive when it comes to fragrances, especially in candles, and this clothing store reeked of floral bouquet. Snot clogged up my sinuses in record speed as I was waiting in line. I left mom at the register and fled to an adjacent shop.

I drove around the sale racks relishing in the fact that I was — for once — on my own. And able to breathe.

My disability prevents me from ever being alone, though. I require a caretaker within earshot to suction my tracheotomy and reposition me in the wheelchair as needed. Anytime someone can’t hear me when I call them, anxiety takes over. This means I rarely explore public places without tag-alongs.

But that day, I could reach mom if needed. The store was crowded, and that calmed any sense of isolation bubbling up — there was always someone nearby who could hear me.

An employee in the thankfully-odorless fashion store asked if I was looking for anything. “A skirt!” was the first thought that popped into my brain and awkwardly tumbled out. Not sure why I said that, but really — is there any time you don’t need a skirt?

My motto in life is “what would Mariah Carey do“ if she had the budget of an SSI recipient. In my experience, it’s rare that strangers transcend preconceived notions of how I get around in the world and what it means to have a disability, but this employee immediately dove into the clearance rack next to us and started pulling out and parading designs in my size.

This was an uncommon interaction. I’m used to people either ignoring my presence completely, or treating me like a child. But this felt as if we were friends on a shopping spree. She noticed my disability (how could you not) and treated me like a person — imagine that!

Her next selection was a black and tan miniskirt. I pictured the different ways I could wear it — with lace tights, black leggings, or by itself for a subdued, casual look.

This ensemble would make me feel super sexy , which, in a way, is my number one goal in life. By showing some skin, I can reclaim my sexuality and let others know I am not ashamed of how I look. So I spent $6 on an amazing skirt that is still my favorite to this day.

Mariah would approve.

In that moment, I also realized that a stranger helped me and I felt good about it. I once thought independence was the path to happiness but have learned that total independence is an impossible goal — for anyone. We all need help and services to live. So there I was at that store, depending completely on someone else, yet experiencing a sense of freedom. To feel that way all the time must be heaven.

The interaction at this store was one fleeting example of interdependence transforming lives of people with disabilities. If we look through this lens of communal support, we can restructure and build networks that allow everyone to live as equal citizens. Access to clothes is one of those things we can’t do alone. Stores should train their employees to be as great as the woman I met that day, because fashion is for everyone.

Join Easterseals Thrive on July 20th at 6pm CT / 7pm EST for a Twitter chat on disability and fashion.

 

At age 100, former Easterseals director of education reflects on career helping children with disabilities

Beulah Moody

Beulah Moody

Beulah C. Moody, former director of education at Easterseals Western and Central Pennsylvania (previously the Easter Seals Society of Allegheny County), dedicated her 19-year career at Easterseals to helping children with disabilities achieve milestones.  This July 4, she celebrates a personal milestone of her own – her 100th birthday!

“I think we helped a lot of people,” she said, reflecting on her work at Easterseals.

She remembers one 6-year-old boy in particular, who gained an entirely new perspective:

“His mother left him lying on his bed for his first six years,” she explained. “He didn’t have any hair on the back of his head because it was always against a bed or the floor.  When he came to us, we did a huge amount of work with him, and attached him to a therapy board. We hoisted the board up, so that for the first time in his life, he was vertical. And the look that came into his eyes when he saw the world from that point of view – almost as if he was standing – was something I will never forget.”

Known more formally as “Mrs. Moody” to her staff, she earned a Master’s of Education from the University of Pittsburgh at age 58. She then began to teach at Easterseals, and eventually became the director of education, retiring in 1986.  As she put it: “My husband and I both worked until we were 70. I think the secret of a good long life is to keep busy, and stay aware of what is going on in the world.”

Through it all, Mrs. Moody was known for her razor-sharp focus and unwavering dedication to provide quality services to the people who came to Easterseals for support.

Rosemary Smith, former director of the speech pathology department, remembers:

“[Mrs. Moody] was June Cleaver when she was married. But when she came to work, she wasn’t June Cleaver any more. When she became director of education, my gosh, there was no fooling around. She wasn’t wasting her time, your time or the kids’ time.”

Her former assistant, Gerry Burchick, also recalls her no-nonsense attitude, which shined through the very first time she officially met her:

“She had a very stern appearance. Everyone was afraid of her. And one day she approached me and asked me to work for her. I said, ‘OK, but I don’t want to get coffee for you.’ And she said, ‘Fine. I’ll get your coffee. How do you take it?’”

Mrs. Moody remains just as focused today as she was during her Easterseals days. She reads the New York Times daily, and then completes the crossword puzzle in ink. She also leads a book group, takes a pottery class and helps underserved populations in her community.

Her recollections of her 100 years of life are a collage of humor, museum-quality detail, and the peaks and valleys of an American life, most of it spent in the 20th Century. 

“I was born during the First World War,” she said. “I waited four years during World War II for the man I married and worried about my son during the Vietnam War. There have been a few bumps and bruises along the way, but now, under the care of my loving son, his beautiful wife and my precious grandchildren, I would say it has been a beautiful life, and still is.”

Thank you, Mrs. Moody, for your service to Easterseals and to people with disabilities.  Happy Birthday!

 

Staged: a ‘seeing-eye dog’ scene

I’m trying something new this summer, taking this weekly play writing class at Victory Gardens Theater in Chicago.

Over the course of 10 weekly 3-hour sessions that start on June 4, 2016, students will explore the process of creating a 2-minute play in the Too Much Light style, writing and crafting pieces based on true life experiences. The class will introduce tenets of honesty, brevity, audience connection and random chance, and will examine specific play formulas and styles that recur on stage– including monologues, object theatre, and even the difficult shortie play. The workshop culminates in a student-written performance of Too Much Light at Victory Gardens on August 13th, presented and performed for the public. In partnership with Victory Gardens’ Artist Development Workshop, Intro to TML at VG offers an opportunity to study the fundamentals of Neo-Futurism in a physically accessible setting, with accommodations provided for any student with a disability. Artists with disabilities are strongly encouraged to apply, and will be given preference in acceptance into the workshop. (The class is open to everyone; however we will strive to maintain a majority of artists with disabilities in the class.)

My Seeing Eye dog sure is calm during flights!

My Seeing Eye dog sure stays calm during flights!.

Without being able to see the other participants, I’m not sure how many of us have disabilities. The first day of class, though, a voice rang out at about my height and requested I pull Whitney completely under the chair I was sitting in. “I don’t want to run over her!” Aha! That classmate uses a wheelchair.

We all got to work right away on our first day. Introductions, exercises to help us relax, exercises to loosen up, a game to inspire creative word choice, then free writing — we wrote continuously for five minutes, without worrying about spelling or grammar. Topic: Something I Feel Strongly About.

After five minutes of free writing we took a 15-minute break. Then we got right back at it. Teachers read a few Too Much Light monologues out loud for us. We discussed ways those writers utilized good word choice, unexpected props, and unique staging to make their one-person play more interesting. Our homework? Transform our free writing “Something I Feel Strongly About” exercise into a two-minute monologue based on a true-life experience. We’d each use a prop and unique staging to perform our monologue in class the next week.

My free writing exercise betrayed my disgust with people who fake or lie about a disability to pass their pet off as a service dog. My Seeing Eye dog Whitney served as my prop and I took suggestions from the teachers about staging. Writing the monologue was fairly easy. Memorizing it? Miserable. Performing it in front of my classmates? Painful! More on memorizing without being able to read print and performing without being able to see the audience in a future blog post. For today, I’ll leave you here with my monologue script:

Scene opens with a person sitting in a straight back chair, an empty chair right behind that person, me standing and holding the back of the empty chair, my Seeing Eye dog at my side.

Me: My Seeing Eye dog leads me down the jet way and onto the plane whenever I fly somewhere. When we get to our seat, I sit down first.

I sit down in the empty seat.

Me: Then I tell her to lie down.

I point to the ground and give Whitney the “down” command.

Me: I picture her like a pile of logs.

I lean down and start shoving Whitney underneath the seat in front of me. Thanks to that person’s weight in the chair, it stays still while I squeeze Whitney under. I say the next lines while continuing to get her situated.

Me: I shove shove shove her back under the seat in front of me. She sighs a sad surrender and lays her head between my shoes.

Whitney does that.

Me: One time while I was leaning down to get Wonder Dog all situated the teenager sitting next to me tapped my back and said she had, like, this really, like, funny story to tell me. I brushed my hand over Wonder Dog’s distressed leather harness one last time to make sure her flat back was completely under the seat.

I Brush my hand over Whitney’s harness.

Me: My fingers spidered over to curl her tail under, too…

I spider my fingers down to Whitney’s tail and remain down there checking her out during the next couple lines.

Me: …so it wouldn’t get run over by the shaky drink cart. Finally confident that Wonder Dog was safe and sound, I scratched her nose and sat up for the funny story.

I scratch Whitney’s nose, and once I’m confident she’s under, I sit up again to deliver the next lines.

Me: The teenager told me she was traveling alone. She told me she was an only child. She told me she had a dog. She told me her German Shepherd was like a brother to her. She told me they hated to leave her brother at home when they traveled.

She told me her dad came up with an answer. “My dad wears sunglasses,” she said. “He, like, acts like he’s, like blind.” The teenager was laughing so hard she could hardly tell the rest. You know, about how her dad, like, had somebody at the leather shop, like, make one of those, like, harness things for Rusty. “He pretends Rusty’s a Seeing Eye dog and, like, brings him on the plane,” she said. “Can you, like, believe that?”

I lean down again to make sure Whitney is still secure under the seat in front of me. I stay down there with her to deliver the last two-word line.

Me: I could.

 

Some are born great: a review of A.B.L.E.’s production of Twelfth Night

Photos taken by Michael Brosilow courtesy of Chicago Shakespeare Theater

Photos taken by Michael Brosilow courtesy of Chicago Shakespeare Theater


We’re pleased to have Carolyn Alessio as a guest blogger today. Carolyn teaches English at Cristo Rey Jesuit High School in Chicago, and her work has appeared in The Chicago Tribune, The Pushcart Prize Anthology, and Brain, Child. Her novel manuscript was a finalist for the PEN/Bellwether Prize for socially engaged fiction.

by Carolyn Alessio

“Some are born great, some achieve greatness, and some have greatness thrust upon them.” This quote from Shakespeare’s Twelfth Night is often used to inspire strength in serious situations, but it actually comes from a hilarious moment in the play. The A.B.L.E. Ensemble’s performance of Twelfth Night I went to at the Chicago Shakespeare Theater featured actors who embody greatness on and off stage and boast some impressive comedic skills as well.

A.B.L.E., which stands for Artists Breaking Limits & Expectations, includes 20 teen actors with Down syndrome and other developmental special needs. During the play, facilitators and teaching artists dressed in black assist the actors with lines while the actors concentrate on their characters and physical expressions. Founder and Director Katie Yohe cleverly demonstrated the method before the play began by offering the audience a line to repeat–about putting away all our cell phones and cameras during the performance.

05_ABLE at CSTAt first I wondered if the assistants might distract from the overall acting, or if the audience might not get to hear the actors’ distinct voices. Once the play started, I realized that several of the actors had already memorized their lines (through a rigorous practice schedule), and we had plenty of opportunities to hear the actors’ individual voices.

Many people with Down syndrome have anatomical differences in their oral cavity and facial muscles, and sometimes their words can be difficult to decipher. But almost everyone has trouble with Elizabethan English at first! At the play I found myself enjoying the words uttered twice–interpreted so differently, so passionately. The whole interaction reminded me of Portia’s lovely speech in The Merchant of Venice, in which she says that the “quality” of mercy is “twice blessed: It blesseth him that gives and him that takes.”

The actors’ physical “voices” also shone throughout the production. The role of Malvolio was a perfect vehicle for several A.B.L.E. actors. Written as a character who is a priggish servant to Countess Olivia, he is duped into believing that his boss secretly loves him and wants him to wear absurd, cross-gartered yellow stockings. Three different actors shared the part, and all showed great timing. Ben Collins, a 19-year-old ensemble veteran, hammed it up expertly, hopping around with one yellow-stockinged leg in the air. The audience exploded with laughter.

Versatility and adaptability are second-nature for these actors. Actor Lucy Walsh, another veteran, confidently played a whopping four roles including Feste, the clown. In the resplendent musical numbers that opened and closed the show, on-stage musicians played ukulele and guitar while the young actors swayed together, sang, blew kisses to the audience, and mixed in dance moves. One inventive actress even captured the creative, mischievous spirit of the play by briefly dancing “The Swim.”

The ensemble will start work on their second original feature film, The Spy Who Knew Me in August. A.B.L.E. describes it on their Hatchfund site like this:

Set among the high stakes game of international espionage, The Spy Who Knew Me follows a cast of 20 actors with Down syndrome as they struggle to stay true to who they really are in a world that wants them to be someone else.

The promising project is being funded by donations via Hatchfund.

 

Learning to teach people to travel independently on public transportation

Kristi McLaughlin, Project Action

I am pleased to introduce Kristi McLaughlin as a guest blogger today. Kristi is the Project Manager for Easterseals Project Action Consulting and is the primary mover and shaker behind getting our certification program off the ground.

by Kristi McLaughlin

If you’re anything like me, you may have had a fear of public transportation prior to taking the plunge into the world of buses and trains. Maybe you’re still experiencing this uncertainty and haven’t yet crossed that bridge. Or maybe you’ve mastered buses and trains, but haven’t yet ventured out to try a new mode of transportation, like Uber or Lyft.

Regardless of your comfort level, there are important skills that must be learned in order to travel on any public transportation vehicle. Public transit riders need to have a minimum level of physical, cognitive and social skills to safely access public transportation. The particular skills may vary based on the mode of transportation, the accessibility of the transit agency and the accessibility of the community in general. Functional skills to ride public transit include, but are not limited to:

  • being able to get to the transit pickup location
  • navigating various terrain
  • boarding and exiting vehicles
  • paying fare
  • navigating through various environmental conditions like snow and ice
  • handling unexpected situations
  • traveling safely in the community.

The professional field that teaches these independent travel skills to people with disabilities and older adults is called travel training. If you had asked me 15 years ago what a travel trainer did my answer would be that it was probably a person that helped schedule transportation or make travel arrangements similarly to a travel agent.

I was completely in the dark.

In my defense, it is a relatively new field that’s been around for approximately 30 years or so, but it is growing rapidly. Travel trainers can be found in just about any organization with the shared goal of independent travel for those they serve — school systems, public transit, human service and older adult agencies, non-profit and for-profit agencies alike.

Easterseals Project Action Consulting (ESPAC) has been working to increase and improve accessible transportation in local communities for more than 25 years. We’re happy to be one of the few organizations teaching the important skills needed by travel trainers to improve the independent travel skills of those they work with. In this vein, ESPAC has developed a robust professional development certification program for travel trainers. Our certified travel training instructor program (ctti) includes coursework covering all the essentials for travel trainers.

Visit the CTTI page on our web site for more information on becoming a certified travel training instructor. You can check out our schedule of future training opportunities there, too, and link here to register.

 

News flash: people with disabilities have sex lives

Who could resist an invite to a panel discussion called “Disability and Sexuality: Everything you wanted to know about disability and sex but were afraid to ask…?”

That's Bethany Stevens.

That’s Bethany Stevens.

I sure couldn’t.

The panel took place at Access Living (a non-profit organization in Chicago for people with disabilities) and was promoted like this:

A panel of “sexperts” will join our guest speaker, Bethany Stevens, J.D., M.A. (blogger of Crip Confessions) for a juicy, frank and sexy conversation about CripSex!

The promotional material also teased, ahem, that before the panel started, “disability-sex-friendly businesses will join us for a CripSex fair, providing free goodies and important information.”

I made sure to get there before the panel.

My Seeing Eye dog Whitney led me into the “Crip Sex Fair,” pulled me forward about ten or twelve feet, and then suddenly stopped. I figured we were at a table, but I was reluctant to reach out and discover what “goodies” were laying there. I finally mustered up the courage, stretched my arm out to grope the goodies, and felt…the push handles of a wheelchair! We weren’t at a table at all. We were in line to talk to a saleswoman from one of the “sex-disability-friendly” businesses there.

I eavesdropped on the woman in that wheelchair, of course. When she reached the front of the line, I heard her using halting speech to compliment the saleswoman. “I love your store,” she said. I paid close attention to understand every word, and I’m quite sure I heard her say she’d celebrated her 18th birthday by going to that shop with a friend.

I won’t disclose what she was looking for there, but I can tell you that staff members helped her find what she wanted. “They actually wanted me to take my time and look around — they said I could stay as long as I wanted,” she marveled. “You all were nicer to me than the people at Wal-Mart.”

The saleswoman sounded pleased. “I’m really happy to hear that,” she said. “We train our staff to be open to people with all sorts of needs.” I didn’t hear any of the people from the sex-disability-friendly businesses mention devices or toys made especially for people with disabilities, just a lot of talk on things they sold that might be easier to use than others or could be adjusted to fit a person’s particular needs.

The CripSex Fair was only open one hour. I picked up a free goodie before they closed, and just like the old classic movies used to do, I’m going to leave the intimate details about that to your imagination.

Time for the panel discussion. Only two panelists: Sergio Tundo from Chicago House (a social service agency serving individuals and families disenfranchised by HIV/AIDS) and Bethany Stevens, a faculty member at Georgia State University who studies, teaches and writes about disability and sexuality. Bethany has brittle bone disease and uses a wheelchair. Sergio never said anything about having a disability himself, and without being able to see him, I couldn’t tell.

The panel discussion was promoted to people with disabilities of any sort, but the focus was really on people with physical disabilities. They gathered cards with questions from the audience, and Bethany announced that the questions fell into three categories. “Raise your hands or make noise for the category you’re most interested in learning about,” she said, listing the three as:

  • Relationships
  • Nuts & bolts, or
  • Miscellaneous

The panelists sounded as surprised as I was when the audience chose “Miscellaneous,” but they just shrugged and took it from there.

“Since we have people here with expertise in things like sex workers and other ways of doing things, this first question is an important one,” Bethany said. “What is the best way to start a conversation with your personal care assistant or personal assistant agency about sex facilitation?”

In the end, most of the questions in the “miscellaneous” pile had to do with personal care assistants:

  • If you’ve been using the same personal care assistant for a long time, and you like them, and you know they will probably not be open or comfortable with helping you with this, should you even bring it up?
  • How does it affect interaction if there is a need for another person to assist in the sexual experience, but that third party is not sexually involved with the other two?
  • If two people with physical disabilities would need an able-bodied person to help them move, how does that third person behave in the relationship?
  • What are some of the best practices for facilitating the experience if you are the personal care assistant?

I didn’t hear one lewd comment after these questions were asked, and not one titter, either. I did hear some answers, and learned about some new ideas, too. Example: San Francisco is working on a program similar to e-harmony to match people with disabilities and personal care assistants. The person who needs the P.C.A. spells out what they need, the personal care assistant fills out a form describing the services they are willing to offer, and you match up that way. Others shared things that have worked for them –- and things that haven’t. I was really glad I went that night and thought the whole thing was pretty cool: people together, talking frankly, sharing stories and offering suggestions.

 

Innovative students from Segal Design Institute work to make sewing accessible

Remember the 9-year-old who wrote a post here for Valentine’s Day about how much she loves her Dad? A lot has happened to DJ Mermaid since that post was published in February. Most importantly, she had a birthday. Our ten-year-old guest blogger has been in a casting program the past couple months, and you can read this post to discover how she came up with her pen name “DJ Mermaid.”

DJ Mermaid still has casts from her hips down to her ankles on both legs, and she’s told me many times that she “doesn’t let her physical disability stop her from doing anything she wants to do.” Her guest post today proves exactly that.

Sew Good Students

by DJ Mermaid

Hey guys, DJ Mermaid here! I’ve gotten back on the guest-blogging trail and I thought this post would be a good way to start off.

Just a couple of weeks ago, I participated in a program with Segal Design Institute at Northwestern University. This is a program dedicated to creative design that changes people’s lives for the better. I requested something that would help me with sewing. Two groups of students were assigned to help me with the following problems:

  1. Driving the fabric efficiently through the sewing machine
  2. Creating an innovative way to use the pedal

I am unable to use the foot pedal because it’s hard to push with my foot. I usually put the foot pedal on the table and use my hands while mom drives the fabric through the machine. The groups came up with two different solutions.

Solution One: Sew Good

  • The Sew Good group came up with a guide constructed of metal to help me drive the fabric. All I had to do was pushpin the fabric onto the guide and keep my hands on the frame in case the fabric started veering off.

    That's the feed control box designed by the Sew Good group.

    That’s the feed control box designed by the Sew Good group.

  • The Sew Good group also created a way for me to use the “foot pedal” with my hands. The students created a box that was able to go to three different speeds simply by turning a knob. The best part about it was that it kept going at a consistent speed I set without any adjustments. The students also painted the box pink and purple. I like those colors. They even used glitter for the writing. I was wowed!

Solution Two: SewMates

  • The SewMates group made a voice operated sewing “pedal” — it’s a box I plug into the sewing machine. The box has wires and a chip to record and receive my commands. The students had to use coding to program the commands. The commands are “Robot, Go, Slow, Slower, Fast, Faster and Stop.” I speak into a little microphone on the box, and, magically, the sewing machine goes. It is high tech and I am impressed that they used coding. Coding is awesome, and I do it all the time!

Last Saturday I was eager to try them out. They worked! I sewed a headband by myself with very limited assistance from mom.

And then, guess what? Mom broke the sewing machine. Nice Going, Mom! It may be a while before I am able to try my devices again!

Well, that’s a wrap!

-DJ Mermaid