“When we design well for disabilities, everyone benefits.” Those words, spoken by David B. Berman, ring so true.
When my bright, articulate son Alex was 7 years old, he wasn’t learning to read. He didn’t “get” that a circle was a symbol for the sound of ‘o’ as in ‘octopus’ and that a tall line was a symbol for the sound of ‘l’ as in ‘leaf,’ and that if you put them together in a certain combination it would spell l-o-l. People did laugh out loud. Teachers were dismissive and administrators placed him in special-education classes with children who had far more severe intellectual disabilities.
A tutor recommended by the International Dyslexia Association was able to help Alex break through. She taught him letter-sounds using homemade flash cards with hand-printed letters and pasted-on magazine pictures of keywords. During lessons, though, it seemed like the cards were always getting mixed up and ending up on the floor.
A new solution was needed.
I designed a system of spiral-bound flip books and cards organized in ring-bound packs. It cues the letter-sounds with logo-like icons, and the letterforms are set in a custom typeface, Alpha Futura. For more than 20 years Alphagram Learning Materials have been sold to districts, schools, special-ed teachers, tutors and parents. The most surprising market, however, has been grandparents. One-inch ads in The New Yorker, I found, appeal to grandmas and grandpas who want to teach their two- and three-year-old grandchildren letter shapes and blending letter-sounds to become syllables and words. This is just one example of how products designed to help children with learning differences can benefit all kids.
Berman, an Ottawa-based design consultant, motivational speaker and vice president of ico-D, the International Council of Design, is the author of Do Good
Design, a book that urges designers to eschew typical advertising projects and use our talents to repair the planet. He’s been increasingly focused on raising awareness of how all of us can contribute to a more compassionate, inclusive and accessible world.
“To raise the level of compassion, we need to increase awareness of the fact that most people regularly experience impairment,” Berman says. “When thinking about how to design for disabilities, we tend to dwell on acute cases—people who are blind or deaf since birth, paralyzed veterans—but most disability is less extreme. In fact, most of us have experienced it ourselves. For example, we are all color-blind when looking at a black-and-white printout of a color document; we are all visually-challenged after the ophthalmologist puts drops in our eyes; mobility-challenged when we’re holding a bag of groceries in one arm and trying to unlock the car trunk with the other; and hearing-impaired when four TVs are on at the gym, on different channels, sound-muted with closed-captioning.”
The vast majority of disability is invisible. Berman reports that 80% of the students who visit the accommodations service at the university where he volunteers have cognitive challenges such as dyslexia, ADHD and OCD. Some have neurological conditions and chronic illnesses. Others are vision and hearing impaired.
I am privileged to know four such individuals who are doing great things to help people with disabilities—and us all.
The Girl with the Purple Cane
One morning about five years ago, this seemingly healthy 29-year-old who worked at Airbnb got out of bed, fell on the floor, and had a hard time getting up. So began a journey that led Liz from hospital to doctor, from misdiagnoses to the realization that the day she “got sick” with a neurological condition was the beginning of being “like this” for the rest of her life. Which meant walking with an awkward gait, using a cane, and feeling marginalized.
She is now one of our nation’s leading disability experts and advocates. Her passion and advocacy has taken her to the Obama White House, to the stage at a TED talk, and to Adobe’s 2017 99U Conference, where she inspired the audience—including me—to rethink how disabled people are pictured, treated, and designed for.
After unsuccessfully trying to convince her favorite clothing chain, J. Crew, to make stylish garments that were easier to put on and wear, she founded a network of companies that see disabled people as an important market. Her Inclusive Fashion and Design Collective champions the design of attractive, functional products, such as ABL Denim’s jeans for people with limited mobility or dexterity, and Top & Derby’s canes and compression socks.
One of her goals is to de-stigmatize assistive devices. “The third-leading cause of death is stigma,” she says. “People don’t like to use canes and walkers because they stigmatize them. Then they’re at risk, they fall, they get injured. When you remove the stigma from those devices, and when you make devices that function well and look good, the results are better for everyone.”
“I didn’t have options when I needed to buy a cane,” she recalls. “That was the first thing that made me angry. Google ‘cane.’ The images are depressing. I used to love back-to-school shopping, to affirm a new identity derived from my summer adventures. With my disability, I couldn’t find anything well designed, not to mention fashionable. We need to have choices! When I found my purple cane, it changed my life. That’s how important choice and identity are.”
She also champions Lawrence Carter Long’s #SayTheWord campaign on Twitter, which asks people to use the word ‘disability’ instead of ‘differently-abled’ and ‘special needs,’ which she calls “euphemisms that reject our lived experiences and cultural identity.”
Speaking Out About Internal Issues
Until recently, I knew Yosef as a talented young rabbi at a Philadelphia congregation, a musician, family man with a young daughter, and social activist. In July, he shared a long post on Facebook during his hospitalization for treatment of Crohn’s disease. Now I also know him as an advocate for people with disabilities.
“Yesterday a hospital staffer came by,” he wrote on Facebook. “I was sitting in the chair catching up on email, wearing sweatpants, a T-shirt, and socks with those sticky treads—basically ‘business casual’ for Philly. The staffer kept asking where the patient was, even after I showed her my ID bracelet. When I finally convinced her I was the patient, she told me I looked too healthy and that I needed to wear a gown so that the staff would know I am sick. She left. I cried. It was hard enough for me to accept that I was having a flare-up and that I needed to go to the hospital. I didn’t need the people there questioning the validity of my hospitalization. “
Crohn’s, a chronic inflammation of the digestive tract, is one of those hurts that do not show—unless you have it, are living with someone who has it, or are a physician looking through an endoscopy camera.
Though TV is replete with commercials for meds for bowel syndromes and for toilet paper—“Enjoy the go!”—anything to do with poop is taboo—unless it involves a cute baby not yet toilet-trained. If you are an adult who has to go often, not enjoyably, you do your best to keep it hidden.
Yosef has spoken out. He’s given sermons about vulnerability, illness and stigma in which he revealed his family history of the disease. “There’s power in using your voice as a communal leader,” he says. “I have a responsibility to help dispel the stigma. When a community has knowledge, there’s strength. And talking about your suffering with others can be a powerful source of healing. It can help all of us accept that it’s not something to be ashamed of, not a sign of weakness, not a reflection of inner failing. It’s simply a fact of life. Design thinking can encompass giving dignity and access to people you didn’t realize were part of your target audience,” he advises.
You don’t have to have a disability or illness to feel panicked on city streets when all the restaurants seem to be posting “Restrooms for Customers Only” signs, or in public places where the ladies’ room line is snaking down the hall. All of us can advocate for more access to bathrooms.
Making Life Better for ‘HoH’ People
Before Terri—a stellar, San Francisco-based freelance designer whose career has taken her from my office and Arnold Saks Associates in New York to top firms and nonprofits in the Bay area—came to work for me in the 1980s, I’d never met anyone with a significant hearing loss. By all accounts, she was 100% “normal,” except it was important to face her directly when speaking and to enunciate clearly so she could lip-read. No yelling over office partitions—a terribly rude habit anyway.
No one knew that since losing most of her hearing at age five she had been ashamed and fearful of being labeled “handicapped.” From lying to elementary school teachers to hiding her hearing aids under her long blonde hair, Terri did not want to be labeled, bullied, and passed over for the design jobs she wanted.
Last year, Terri “came out” as proudly ‘HoH’—hard of hearing. Inspired by a UX class at General Assembly, she studied restaurant-rating sites and discovered that they have dozens of filters, but none for noise level. So she developed an app, “Shh!” that helps HoH people find quiet restaurants, record the sound level, and post reviews. Her prototype won an AIGA/SF IdeoU Diversity scholarship. Here is the presentation deck that tells her story:
Terri hopes to develop her MVP (minimum viable product) and get people to use it and test its viability. And she hopes that Yelp will take notice. After “Shh!” is launched, she plans to develop a website that lists venues with good acoustics, including workplaces, schools, theaters, lecture halls and places of worship—and that describes the architectural improvements need to to make them HoH-friendly. Talk about beneficial to all. Many people, not only those with hearing loss, want to dine in quiet restaurants and enjoy public places with good acoustics.
“It’s not hard to design venues where everyone can hear each other better, and some solutions aren’t costly,” Terri says, “but owners need pressure from their customers. If no one speaks up, it won’t happen.”
Carolyn McCarron Sienicki
Advocating for Real Solutions
My friend Carolyn is a graphic designer, artist, teacher and writer based in the Princeton, NJ, area. She worked in publishing in Boston and for John Waters Associates in New York before embarking on a freelance career while raising two young daughters. Born with a genetic hearing loss, she began wearing hearing aids at age five. She recently received two cochlear implants and has returned to teaching, creating art, and contributing to influential magazine articles that are inspiring other deaf people to experience the joy of sound.
“Hearing with cochlear implants is not the same as hearing normally,” she says. “Results vary from patient to patient. But they’re wonderful. I can hear what I never heard before, including my children giggling in the other room. I used to wait for movies to be released as DVDs, so they would be captioned. Now my husband and I can enjoy taking our girls to the movies.”
She’s not keen on the trend of decorating hearing aids to make them look fashionable; instead she applauds collaborations between designers, engineers and technologists that lead to real solutions. As an adjunct college professor, parent, and volunteer in her daughters’ schools, Carolyn says she’s continuously learning how many people don’t process information the same way. “I’ve seen designers and engineers get obsessed with developing the next cool thing,” she says, “but the best design solutions often begin as a solution to someone else’s challenges, such as OXO’s kitchen tools and Target’s prescription bottle. It takes an enormous amount of empathy, research and collaboration to successfully accomplish this.”
She points to Apple’s collaborations with with Resound on better hearing aids and with Cochlear International on a new generation of implants: “With the Nucleus, people will be able to program their devices—adjusting volume and other settings—right from their iPhones, and stream sound directly to their implants or hearing aids,” she notes. “To make an adjustment to be able to hear in a noisy place, you just reach from your phone, not behind your ear.”
“This kind of collaboration is making these devices more accessible, and helping remove the stigma,” she says. “Engineers, industrial designers and interface designers are finally working together to design technology that fits seamlessly into our lives and helps us hear more, and that is what makes design and technology “cool.”
“Everyone needs to be aware of the challenges and stigma people face around their disabilities every day,” Carolyn adds. “Too often, people with invisible disabilities are met with annoyance and unfair assumptions about their intelligence.”
Surely, some of my son Alex’s teachers felt that way about him. Now, at age 36, he is an Internet entrepreneur in Beijing, San Francisco and Singapore. And he is one of the most articulate non-Chinese Mandarin-speakers most Chinese people have ever met. Who knew then that Mandarin uses a different part of the brain? Alex is also the father of my 16-month-old grandson—who may soon start learning his letters with the help of an Is It a Word–or Not? flip-book.
When we design well for disabilities, everyone benefits.
Editor’s Note: The language in this article has been edited in one instance.