Why Disability Visibility Matters at the Voting Booth

Capitol Hill against a vibrant blue skyElection officials around the country are hard at work getting voters registered and registrations updated as the Nov. 6 General Election approaches. In some states, the deadline for early and absentee voting has already passed. That deadline doesn’t concern me, though. I always vote on Election Day, right there at the polls. Here’s how that works:

  • I’m handed a headset, and a poll worker guides me to a special voting machine equipped with speech software
  • That text-to-speech software translates the candidate selections on the ballot into spoken choices
  • A special keypad enables voters like me, who are blind, to choose our candidates by touch
  • Our selections are confirmed by voice again before the ballot is cast

Some friends are astonished to hear all I have to do to cast my vote. “Isn’t that a pain? Why don’t you just vote absentee?” I answer with a shrug. For me, there’s no substitute for the feel of a voting device in your hand, the sound of your vote actually registering.

And then there’s this: In the not-too-distant past people with disabilities did stay home, not just on voting day, but perpetually. We can never go back to those days, and voting publicly is one way to help ensure we don’t. I like to think it means something for other voters to see someone like me, a citizen with a disability, exercising the same basic right that they do, voting in private without public assistance.

Millions of Americans with disabilities share this ambition. We can’t let others forget about us. One way to do that: let them see us, out there with everyone else, casting a vote in November.

 

Recognizing the Gifts and Talents of All

A young man serving a drink while working as a baristaPeople with disabilities of all genders, races, socioeconomic statuses, and ethnicities have a history of making the world and our communities richer, better places. What potential do we then lose when we allow barriers to prevent our fellow humans from participating?

Some of the most groundbreaking inventions and innovations throughout human history have been inspired and conceived by people with disabilities. Some of these figures are household names: Thomas Edison, Temple Grandin, Albert Einstein, Leonardo Da Vinci and Stephen Hawking. But while many of the contributions of people with disabilities are in the mainstream, their names are often left out of the history textbooks and out of the conversation.

I recently came across a New York Times article that told the story of the OXO brand; A husband and wife teamed up to create a product that would be comfortable for Betsy, the wife, to hold (she had arthritis). As a result, they came up with a line of kitchen products based on the philosophy of universal design. While I had seen the company’s products lining the shelves of many major department stores, the story behind it, and the fact that it was created for all hands, escaped me. According to the article, it has somehow escaped many people, too.  This is just one of the many stories of inventions born of necessity for people with disabilities but ultimately adopted by people of all abilities. See also: The typewriter, text messaging, and the talking remote.

Even with all these accomplishments, the movement towards an accessible and inclusive society continues. Is our notion of what it means to contribute to society even inclusive of people with disabilities?

Right now, society is at a crossroads. People are paying closer attention to social issues that are important to them, looking for ways to be more involved. However, for society to continue to improve for all people living in it, we must face tough decisions about our institutions. Finding and removing the barriers within those institutions will be a challenging process.

At Easterseals, one barrier that is in the forefront of our minds is health care. Threats to Medicaid are looming, and additional cuts or caps to Medicaid will severely impact the services we provide. In fact after past cuts to Medicaid, 62% of our clients surveyed (including individuals with disabilities and seniors) were unable to access services like employment and training programs due to a lack of community provider options. We grapple with this reality while still working with people with disabilities to overcome barriers, some of which are societal in nature. As a result, we support some of society’s most powerful change agents. What kind of society will they want to create?

Michael, 34, an Easterseals Thrive supporter and freelance writer, said, “Traditionally, if you ask someone what they do, they’ll talk about their job. A lot of avenues are closed to me due to my mental health and to a lesser extent my physical health. My depression has significantly hindered my ability to succeed in academics which has, in turn, closed a lot of doors for me to achieve gainful employment. This further exacerbates my depression.

“Individuals are capable of contributing in more ways than economically. Simply being a good friend or an emotional support for other people can be a means of adding to society. Being someone who other people can rely on when they’re having a rough time is a remarkably useful ability. I think that this form of emotional labor has been undervalued traditionally, but that it is finally starting to come around as a viable source of worth for one’s self and within a community.”

 

New York Fashion Week, a Jumpsuit and The Next Generation of Fashion

This is part two of a post on disability, adaptive fashion and making style accessible to all. You can read part one here. Join us on social media and share your thoughts!

Last week was New York Fashion Week, and while I normally don’t pay too much attention to the fanfare, I was struck by one show in particular: Runway of Dreams FASHION REVOLUTION.

The show, presented by Runway of Dreams Foundation, showcased trends for Spring 2019 from designers like Nike and Target, and modeled by people with disabilities. The runway was fully accessible and, to top it all off, the show was hosted by actor RJ Mitte (you may know him from Breaking Bad).

Elsewhere in New York City, Mama Cax, a model-activist and amputee, walked in the Chromat show.

Two women, one in a wheelchair, wearing pastel, paint splattered jumpsuits from ASOS

via ASOS

Seeing this news got me thinking about a “wheelchair-friendly” jumpsuit from online retailer ASOS I’d seen making the Internet rounds a couple months ago. The paint-splattered, pastel jumpsuit is fun, bold and makes a statement. Perhaps even more thrilling than the design is the story behind it.

According to Racked.com, BBC reporter and para-athlete Chloe Ball-Hopkins had to miss a much-anticipated music festival headliner because “when the weather turned, her options weren’t great: She could wear a plastic poncho that was difficult to wheel in, or carry an umbrella and have a friend push her”. Fed up, she contacted the design team at ASOS and got to work on collaborating on the garment. It was met with unanimous approval and enthusiasm, from both people with and without disabilities.

If NYFW and that cute ASOS jumpsuit are any indication, the tides are turning.  At Easterseals, we’re all about being the change and finding solutions. What do you think is the best way to get more retailers carrying adaptive, affordable and stylish clothing?

 

How An Instagram Ad Got Me Thinking About Adaptive Fashion

As I was scrolling through Instagram on my way home from work the other day (taking the train, of course! Don’t Instagram and drive!) I came across an ad sandwiched between photos of a dripping ice cream cone and someone’s baby.

The stylized Instagram pic featured a sleek, chic woman in an Adidas track suit, jacket draped over her shoulders in the effortless way I could never pull off. Sitting in a wheelchair, she had one leg crossed over the other, sporting red slip-on booties so cool you immediately daydream of the scenario in which you’d wear them.

The copy below the image advertised a new adaptive line from Zappos.com, and when I visited the page I saw keywords for browsing like “easy on/off shoes” and “adaptive jeans”, “magnetic closures” and “diabetic shoes”. The results for women’s selections clocked in at 823 items. Featured among the pieces are affordable and stylish staples like this black swing dress that’s sensory friendly and this four-way reversible scoop jersey top.

If you’re a regular on the Easterseals blog, you know that we’ve taken a keen interest in adaptive fashion over the past few years. It’s clear why: In today’s age of social media, we’re eager to express ourselves and our style. We want to wear clothes that tell the world how we see ourselves and how we want the world to see us. We want to feel comfortable and confident and clad in pieces that, well, look good. For people with disabilities though, sometimes finding clothes that are adaptive come at the expense of personal style. Maybe that’s why seeing this ad among the mishmash of my Instagram feed gave me pause; fashion and accessibility and style intersected in a way that felt authentic and cool.

As Erin Hawley, Digital Producer for Easterseals Thrive, shared in a previous post: “Modified clothing has been out there for some time, but the styles are usually expensive, hideous, in limited production, or a combination of all three. It’s hard to find items with magnetic snaps, comfortable seams, elastic waists, or sensory-friendly wear.” She adds earlier in the piece, “As an adult, I still have trouble finding age-appropriate clothing that fit my small frame and appeal to my personal style. I’m 32 years old, and I don’t want to wear Elsa and Anna t-shirts (even though I love Frozen).”

Don’t get me wrong: I work with and know plenty of people with disabilities who infuse their style into their everyday wardrobe. But when we look at the big picture, it’s plain to see that the fashion industry is at a crossroads when it comes to designing clothes with people with disabilities in mind. As we’ve discussed here before, there are companies making great strides towards progress (looking at you, Tommy Hilfiger and Target). But wouldn’t it be fabulous to see options in any mall store and big box retailer? We’re moving in the right direction, but we need to get there faster.

Stay tuned for part two!

 

What Happens When User Experience Leaves Out All Users?

Chicago Disability Accessibility & Inclusive Design Meetup LogoBefore I went to Accessibility Camp Chicago Saturday, I had no idea that the two letters “UX” is tech shorthand for “user experiences.” Accessibility camp taught me a lot. Most importantly, I now know that there’s an acronym for user experiences that are not user-friendly for all users. That word is SUX.

SUX stands for “some user experience” as in user experiences that are designed for the majority of users but don’t bother ensuring they’re usable and accessible for all.

The term was coined by Billy Gregory, a presenter I heard at camp Saturday. He’s the Director of Training at an accessibility consultancy firm called the Paciello Group, and during his presentation he wondered out loud about how it is that so many designers and developers who talk about design and usability shy away from accessibility. “If your whole job is to design a user experience, why wouldn’t you want that first word ‘users’ to be more? Why wouldn’t you want more people to be able to use the stuff you worked so hard to design?”

He told us that the SUX idea came to him a couple years ago. “So many designs are so, so close to being fully accessible,” he lamented. “But then they stop just short of being usable by everyone, including people with disabilities.” Gregory called the “just short” phenomena some user experience. “So many more user groups could use the technology if developers just spent maybe another 10 minutes, or another hour, just planning it a little bit better.” Once Gregory realized that his term “some user experiences” could shorten to SUX, he went, where else? To Twitter!

His tweet, “When UX doesn’t consider ALL users, shouldn’t it be known as “SOME User Experience” or… SUX? #a11y.” When the tweet went viral, Gregory got to work gathering examples to share on Twitter. “I must have struck a nerve with a lot of developers,” he said. “They got behind it.”

And you know, I’ve been noticing the word “accessible” coming up more often in conversations about web sites and apps lately, too. Others I talked to at Accessibility Camp Chicago said they’ve been hearing more and more people mentioning accessibility when it comes to web design. “It’s not a dirty word any more,” one said to me.

I’m not exactly sure why that is. Maybe their legal staff is telling them to. Maybe they think it’s the right thing to do. Or maybe, just maybe, they understand that bringing more users to their sites – and keeping them there – is good for business.

“It’s not just people with disabilities,” Gregory pointed out in his talk. “I see my parents, as older users, needing more help surfing the web now.” His parents don’t really understand what it his their son does for a living, he told us, using a story about taking his parents out for dinner as an example. “When the menus came and it was time to order, my mom pulled out a magnifying glass and my dad pulled out a flashlight. These are two people that have no idea what accessibility is, but they’re both using forms of assistive technology,” Gregory said.

When he specifically mentioned his father’s frustration dealing with carousels on web sites, a collective groan came from the crowd. We felt his pain. Carousels. Ugh. “He uses an iPad now, his reaction time is slower than it used to be, and it’s tough for him when he sees something, goes to click and it changes. He ends up on a page that he doesn’t wanna be on. Then he’s gotta go back, and he doesn’t get it.”

Gregory urges developers to consider the aging population along with users who have disabilities when designing new sites. “Every person fortunate enough to live a long life will experience one change or another, and those kind of changes will leave them needing some sort of assistive technology,” he said. “That’s a lot of potential users out there.”

As my Seeing Eye dog Whitney guided me outside after Billy Gregory’s talk, I felt hopeful — and happy. “They understand us, Whitney!” I told her, giving her a scratch on the ears. “We’re not alone. Those people are with us.”

 

Accessibility Camp Chicago: What I’m Looking Forward To

Chicago Disability Accessibility & Inclusive Design Meetup LogoEver been to an Accessibility Camp? Me, neither. I’d never even heard of such a thing until I got an invite to attend Accessibility Camp Chicago this Saturday. One look at (okay, with the help of my speech synthesizer, one listen to) the descriptions of the presentations – everything from “The Dyslexic Code” to #SUX: Some User Experience to Straws and Straw Men (about the costly argument against accessibility — I was hooked.

And how could I say no? After all, professionals who understand all facets of the digital space will be there Saturday, including:

  • Web and Mobile Developers
  • Visual and Interaction Designers
  • User Experience Designers
  • Researchers
  • Quality Assurance Testers
  • Content Producers
  • Project Managers
  • Product Owners

Best of all, presenters are coming in from all over North America, and many of them have disabilities and use accessible technology in their daily lives, just like I do. If you’re interested in joining my Seeing Eye dog and me at camp this Saturday, September 8, 2018, there’s still time to register online. Look for me there — I’ll be the one with the headphones on frantically typing notes into my talking laptop computer or using dictation software with my iPhone to link to accessible web sites and tweet to others there about the benefits of accessibility!

 

Why Teaching Handwriting In Schools Is So Valuable

Two pens laid over a lined notebookWhen I lost my sight in the 1980s, authorities set me up at a residential facility to learn how to use a white cane, read Braille, that sort of thing. All the students there were adults, and all of us had lost our sight fairly recently.

Well, almost all of us. Two of the students there were 18-year-olds who had been blind their entire lives. They already knew Braille, they had some experience with computers and assistive technology, and they were well trained in orientation and mobility. One thing they’d never learned in school? How to write with a pen. These two young women wanted to go to college, and in order to live independently, sign their names and dates on forms, write out rent checks and so on, they needed to learn penmanship.

But now, some 30 years later, the value of handwriting has diminished. In most of America, Common Core State Standards for public schools don’t even mention handwriting anymore. Most of us swipe or type on a keyboard rather than write.

A story in the New York Times reports psychologists and neuroscientists who are suggesting the links between handwriting and broader educational development should not be ignored, and that, “Children not only learn to read more quickly when they first learn to write by hand, but they also remain better able to generate ideas and retain information.” From the article:

“Two psychologists, Pam A. Mueller of Princeton and Daniel M. Oppenheimer of the University of California, Los Angeles, have reported that in both laboratory settings and real-world classrooms, students learn better when they take notes by hand than when they type on a keyboard. Contrary to earlier studies attributing the difference to the distracting effects of computers, the new research suggests that writing by hand allows the student to process a lecture’s contents and reframe it — a process of reflection and manipulation that can lead to better understanding and memory encoding.”

The article refers to studies that show how cursive writing can train self-control ability in a way that other modes of writing do not, which may help children diagnosed with ADHD or autism. Some researchers quoted in the article say that learning to write print helps students understand the reversal and inversion of letters (the difference between lower case “b” and Lower case “d,” for example) and may be a path to treating dyslexia. Learning cursive may be particularly effective for individuals with developmental dysgraphia (motor-control difficulties in forming letters) as well.

It all makes me wonder. School is back in session now. Are any kids taught to write by hand anymore? Does it matter? Those 18-year-olds I met at the facility for the blind decades ago struggled so much to learn handwriting — today, they are likely using their talking computers or SmartPhones to pay their bills online!

 

Employment Opportunities for Young Adults With Autism

Have Dreams - Helping autistic voices emerge since 1996Just got word from a program called Have Dreams that I thought you Easterseals blog readers might want to know about. Have Dreams Academy is part of Project SEARCH Collaborates for Autism at Northwestern University. It’s a one-year business-based program for high school students in their last year of transition services. The goal of the program? Competitive employment.

The message I received said Spring/Summer graduates are currently pursuing competitive employment with support from Have Dreams. Graduates from previous years are employed at a successful Chicago retail store called The Spice House, at Amazon, and at Walgreen’s. The program credits its success to its emphasis on:

  • using an autism-specific curriculum
  • participation in three ten-week internship rotations on Northwestern University’s campus
  • job development
  • job placement
  • follow-on services

The 2018-19 Have Dreams Academy begins on August 23, 2018. Space is still available, and they’ll continue accepting applications and conducting intakes through October 2018 or until the program is full. For more information on applying, contact Christine McQuinn at cmcquinn@havedreams.org. For general information about the Have Dreams Academy employment training program, contact Andrea Franckowiak at ajohnsen@havedreams.org or call 847.905.0702.

 

Tips For Preparing Your Child To Ride the School Bus

I am pleased to have Dr. Judy Shanley here with a guest post today. Judy is the Assistant Vice President of Education & Youth Transition here at Easterseals.

by Dr. Judy Shanley

The top of a yellow school busTravel via school bus and school transportation involves much more than just being on the bus. It also involves getting to the bus, getting on the bus, getting off the bus and then getting from the bus to the school building. The National Association for Pupil Transportation provides supports regarding school bus safety. Each state has a chapter with its own unique activities, and you can learn about school bus resources in your state and community by contacting your state affiliate. In the meantime, here are some tips to help school bus riders wherever they live in the United States:

  • Contact your school district to see if they offer support programs where parents/children can come to the school to tour a bus before the service starts at the beginning of a school year.
  • Help your child understand and prepare for social situations on a school bus such as sitting next to classmates and responding to driver directions.
  • Encourage your child to travel with a bus buddy, such as a sibling or peer. Consider setting up chairs in the living room to mimic a school bus (have a bus driver, have children sitting in seats imitating behaviors that a child might see, and so on) so the child can learn how to react in these situations.
  • Encourage your child to contact you when they arrive safely at school, especially if you have concerns about their independent travel.
  • Learn whether your school’s pupil transportation service has a bus tracking service so you can monitor the status of your child’s school bus as it travels to and from the school building.

Parents who think their child might need accommodations or specialized supports for school transportation (funded under IDEA) will need to speak with special education professionals to determine whether it is appropriate to have a travel/mobility assessment.  When a range of transportation options are available, I recommend parents consider the option that enables students to travel with their peers (with and without disabilities) in the least restrictive mode. Some school districts even have public transportation service available. For some students, this is an appropriate option.

And guess what? Many parents are considering developing new ride-sharing programs to support travel to after-school and community activities — kind of like Uber for kids. Programs such as Zemcar in the Northeast and HopSkip/Drive in California are programs started by parents that provide an alternative to traditional pupil or public transportation services.

Some of you reading this blog post are starting to think about your child’s transition to post-high school settings. For others, this new school year may mark the first time your child is traveling independently. Take advantage of resources and supports that your school district and others provide and use this opportunity as a teaching moment — you’ll be setting the foundation for future independent travel. By starting your child on a path to independent travel now, they’ll end up in a place where mobility won’t impede their success in any setting.

 

Watch: This New Program Aims to Increase Disability Inclusion and Awareness In Schools

I am delighted to have Patty O’Machel back with us as a guest blogger. Patty is a writer, special needs advocate and mom. Her blog Parenting Outside The Lines collects and shares the stories of parents all over the world who are raising children with special needs, and her guest post today lets you in on another “Outside the Lines” project that launched earlier this month –just in time for the new school year!

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

Ability awareness is a passion project of mine. This is where my heart lies, as the mother of a little girl with cerebral palsy and as an advocate for change and acceptance. I want to share Ability Awareness programs in schools all over the country and help to change perceptions in kids of all ages.

And so, earlier this month, I launched a new business called Educating Outside the Lines. This project stems from my core belief that “kids with disabilities are just kids.” I want the world to see what I see. I want them to see ability.

The overall objective of bringing ability awareness programming into the school system is to break down the barriers between children with and without disabilities, and to help erase the fear of differences.

Every kid with a disability is someone’s child, someone’s classmate or someone’s friend, and today’s schools include children with all types of disabilities or challenges. Every child who has a classmate or friend who is physically or developmentally challenged learns a lesson in acceptance and understanding that they will take with them into adulthood.

Students in a gym testing out wheelchairs and tossing up a basketballSchools are instrumental in breaking down barriers, fears and misunderstanding about disabilities. By celebrating and enlightening kids, school becomes the change agent the world needs to include and accept children with disabilities in every aspect of life.

I have been able to develop my Educating Outside the Lines program into several areas of focus, from assembly speeches to grade-level specific programming. With the help of many partners in the disability world, my passion has come to fruition.

A Chicago-based firm called Small Forces creates short documentaries that highlight the work of grass roots organizations and people making their communities better. As part of a grant project, Small Forces worked with Educating Outside the Lines to produce a video that completely encapsulates the impact of the program. The video launched on The Mighty Parents Facebook page on Friday, August 3 and had been viewed over 18,400 times in its first five days online. The beauty of the short video is in the voices of children with disabilities speaking from their own perspective about what this kind of education means to them personally.

I am so proud of this video and of the voices of the kids. The show stopper is one of Easterseals own, Ahalya Lettenberger, who with her brother Charlie served as the Youth Ambassadors for the Easterseals DuPage and Fox Valley Gala in 2017. Ahalya is an amazing example of “abilities” in every aspect of her life. While her disability doesn’t allow her to walk independently for long distances, she is a 16-year-old girl on the move. She competes internationally in paratriathlons, she is an above average student in high school, and is on her schools’ swim team. In the video, Ahalya speaks of her experiences with peers not always understanding her disability, and she shares her message with school-aged kids about how to fight back when life gets hard, and to achieve and strive for your own personal goals. Her message is of strength, acceptance and ability.

Ahalya Lettenberger

Ahalya Lettenberger

The video also highlights a 16-year-old high school hockey player with dyslexia who speaks about his experience with a hidden disability, and his peers’ misunderstanding of what he really must conquer each day sitting next to them in class. My 13-year-old daughter uses a wheelchair to get around her junior high, and she’s in the video, too. She speaks about her overall feelings of invisibility with her peers, and about the misconceptions about the true accessibility of her school.

Prosthetic legs, wheelchairs, and hidden disabilities can often be scary to kids. Our Educating Outside the Lines program lets kids experience these things hands-on and serves to demystify the differences. It erases isolation. It combats bullying. It stifles the urge to stare and exclude. It bridges the gap between fear and understanding, and there is nothing more powerful than that to teach our children.

I am so excited to get my business launched, and praying that our web site and video get noticed by parents, teachers and administrators across the country to help them understand the importance of ability acceptance programs in schools. Please take a look at our new Educating Outside the Lines web site and by all means feel free to email me at pattyomachel[at]gmail.com for more information on ways to bring ability awareness programming to your schools.