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Ask Ada: When Is It Okay To Help A Disabled Person?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag. What’s The Best Way To Offer My Help To Disabled People? Dear Ada, I’m a commuter and spend a huge amount of […]

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

What’s The Best Way To Offer My Help To Disabled People?

Dear Ada,

I’m a commuter and spend a huge amount of my time daily on public transportation. I regularly see people with disabilities also accessing public transportation, and sometimes, I wonder if I should offer my assistance. For example, there’s a blind woman on my train who uses a support cane; yet all of the other passengers rush past her to get on the train. Another person I see on occasion who appears to be hard of hearing looks like they’re sometimes confused as to when their stop is coming. Should I ask them if they need help? Should I just start helping? I don’t want to insult them, because they’re obviously managing on their own. I just think that we could all use help, and I don’t mind stepping up to offer help. Should I, or shouldn’t I?

Sincerely, Conflicted Commuter

Dear C.C. —

Asking to help someone if you have genuine intentions is never wrong — ever. But before you offer your help, take a moment to check your motives, and determine whether the person actually needs your assistance, or if you only perceive them to need help because they are disabled. 

For example, the person you mention who is deaf or hard of hearing probably does know where their stop is. They’re counting and watching for each stop on their route, and as long as everything is going forward as expected, they can manage fine without assistance. They don’t need your help, and offering it might actually have the opposite effect, confusing them when they are getting along just fine.

So when might this person need help? When something happens out of the ordinary which they can’t hear. For example, imagine a scenario where a train needs to skip a stop, or is being rerouted, and an announcement is made over the intercom. In that scenario, you should absolutely offer them your help. 

When you do feel like you should offer your assistance, it’s imperative you ask permission of the person first. A simple, “Would you like a hand with that?” or “Do you need any help?” is the easiest way to start the conversation. If your offering help to someone who is deaf, make the gesture of what you’d like to do, and then look to their face for approval.

Check your motives, and determine whether the person actually needs your assistance, or if you only perceive them to need help because they are disabled.

If the person says no, then smile and go on with your day. If they say yes, then let them tell you what they need from you. For example, the blind woman may ask you to take her arm and guide her onto the train. Or, she may simply want you to tell her if the car is too full to enter at this time.

Someone may agree to accept your help, and then not instruct you how to proceed. In this case, explain everything you’re doing before you do it. For example, say to the woman who is blind: “I am going to stand to your right and block the individuals on my side from rushing past you. Please let me know if you’d like me to take your arm and help guide you into the train or if this is sufficient.”

By explaining your actions before taking them, you’re giving the person you’re helping the agency to accept what you’re suggesting or request you do something differently.

The most important thing to remember is this: Offer help to a person with disabilities the same way you would for an individual who is able-bodied. Be genuine, be sincere, and lead the conversation by asking for their permission first.

A depressed man with a man bun looking sad.
Photo by Matthew Henry from Burst

How Can I Reach Out To Someone Struggling With Depression?

Dear Ada,

My adult sibling was diagnosed a few months ago with depression and anxiety. He told us all about the diagnosis, but my family isn’t really the close-knit, sharing type. So, when he mentioned it at a holiday party, everyone kind of acknowledged what he was saying, but then moved on with a different conversation. My best guess is that no one has really followed up with him, mostly because we’re all a bit emotionally-naive in my family — myself included. I’d like to be better, and I want him to know I’m here for him. Can you teach me easy ways to reach out to him. Remember, this is awkward for me, and will likely be awkward for him to receive the help.

Sincerely, A.S.

Dear A.S. —

It must have taken a lot of courage for your brother to speak up and share his diagnosis with you and your family. It’s so nice to hear you’re stepping up to show you care, even though this isn’t exactly the kind of conversation that is easy for you.

You mentioned that your brother shared his condition, but you didn’t say how he’s handling everything. Is he seeing a therapist? Find out, and encourage your brother to do so if he is currently trying to manage on his own.

If you’re feeling too uncomfortable talking to your brother about everything, remember that you can always initiate the conversation via text, email, or a social media message. A simple note praising him for sharing his struggles and letting him know you support him is a great first step.

Not sure what to say? Try this:

“I know it’s been a little while since you told us you were diagnosed with depression. I wanted to let you know that I’m proud of you for speaking up, and that I’m here for you if you need anything at all.”

Do your best to support him in the way he needs, and not what you think he might need.

When he answers, ask him this question: “In what ways can I support you?”

Depression manifests differently in each person, and because of that, it can be tough to know what kind of help he needs. Hopefully, he is aware and is able to relay that to you. If so, do your best to support him in the way he needs, and not what you think he might need.

If he’s not sure how you can support him, the best thing you to do is be a constant in his life. Because you’re already concerned about being vulnerable with each other, just worry about being present. Email him funny GIFs ask him to hang out with you more often.  It’s not your responsibility to be his doctor or therapist, so take that weight off your shoulders, and instead, just be there.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Disability Vision & Hearing Loss

The Treasure Hunters: Geocaching When You’re Disabled

Technology and a dose of true grit are helping these modern-day explorers take part in the global treasure hunt called geocaching.

Ed Manley gazed up the mountain. He could see the peak, where the treasure was stashed. And boy, did he want that treasure. But as a one-legged man with weight issues, with crutches and a body that complained whenever he moved, getting up that hill was going to be difficult.

A small container with a plastic-wrapped notebook doesn’t sound like much in the way of treasure. But for geocachers like Ed Manley, who live for the hunt, these caches–hidden under rocks, stashed in hollowed-out tree trunks or stuck to the metal base of a lamp post—are more valuable than pirate gold.

In geocaching, a small ‘cache’ of objects–containing a logbook and several small prizes wrapped in a waterproof container–is hidden somewhere in the real world. The GPS coordinates of the cache are then posted online for other geocachers to find, along with hints and clues on how to locate it when you’re in the area. Those who find the cache record their adventures in the logbook, swap out any of the items they want for prizes of similar value, and return the cache where they found it for other people to try to locate.

Because geocaches are often placed in remote or challenging places, it doesn’t sound like a hobby that would play well with disability or chronic illness. But the reality is different: for people like Ed Manley, geocaching can provide a literal lifeline.

A man with a beard in a powered wheelchair going geocaching with his daughter.

Ed Manley geocaching with his seven-year-old daughter.

From Suicide To Geocaching

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

In 2003, he fell down some stairs at work, breaking his neck. Manley already had health issues due to a car crash in 1979 that had hospitalized him for two years, but he accident spelled the end of his working life, and the beginning of a depression.

After years in hospital and 42 surgeries, his mobility was at an all-time low, and he’d developed an addiction to painkillers.

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

“I didn’t feel like I was of benefit to my family,” Manley remembers. ” I had become addicted and it nailed me to the couch, I couldn’t do nothing, I was useless.”

Based in Birmingham, Alabama, Manley decided to end his life on his boat.  “They’d find my boat floating, and that would be it.”

But as he was getting ready, the mailman dropped by. He had a package for Manley: a GPS device.

“I had ordered it using cigarette coupons and a few dollars, and I’d forgotten about it. I didn’t know a thing about a GPS.”

Interest piqued, Manley went into the house and sat down at his computer. One of the first hits  geocaching.com, where he discovered there was a geocache nearby. Curious, Manley followed the co-ordinates to a hole in the fence at his former old high school.

“I thought that’s pretty cool, and I decided not to kill myself.”

The Healing Power Of Hunting

The GPS device changed everything, Manley says. Although he was a long way from what he considered “healthy,” geocaching gave him something to do. Getting out of the house made him feel better.

A one-legged man on crutches wearing camo and hunting for geocaches in the woods.

Ed Manley going geocache hunting on his crutches back in the 2000s.

“It gave me some hope of recovery that I could have a life,” Manley explains.

Over the following year he hunted down increasingly difficult caches, building his emotional and physical health. Geocaching fed a strength Manley didn’t know he had. “I’d put my crutches down and crawl through mud on my butt.” He threw away the painkillers, and began to focus on a goal.

“I had one cache in mind,” Manley recalls. “It was on the top of the mountain. For a one-legged fat guy to get to the top of the mountain seemed like an impossibility. But I said if I can get up the top of that mountain and find that cache I will know I have recovered.”

It took him a year to build up the stamina to scale the mountain. “But I got up there and got that cache. I got up there and cried like a baby. I’d escaped the drugs, the depression, the feeling of uselessness.

“Geocaching saved my life.”

“Geocaching saved my life.”

Now 63, Manley is still geocaching. He mostly gets about in a powered wheelchair, which means mountains are off the cards.

“I don’t go after the hard ones as much anymore,” he says. “Over 10 years I proved I could get any cache. I have found caches in four countries and throughout 29 states. It’s been a blessing. It’s kept me sane.”

Manley still finds around two caches a day, gradually adding to the thousands of finds he’s racked up since that first find. And he has a new companion, his seven-year-old daughter, the child he has with the second wife he met through his hobby.

“My daughter loves it more than I do: she insists we go out, even in the snow.”

Geocaching When You’re Blind

For Day Al-Mohamed, geocaching is like hunting pirate’s treasure. “You have a secret map that takes you to a treasure. Especially some of the great big caches you find, like a big ammo box that someone has filled with things.”

A young, attractive Muslim-American woman with her guide dog.

Day Al-Mohamed’s visual impairment just makes her more determine to find elusive geocaches.

The public servant, who works as a senior advisor the US Department of Labor in Washington DC, began geocaching with friends. “They had just started and were super excited about it.” The excitement was contagious, and Al-Mohamed and her wife began hunting down caches on their own.

Visually impaired since birth, Al-Mohamed can make out shapes, and colors if she gets up close. But by pairing her iPhone’s voiceover function with the geocaching app, when she hunts down caches she’s able to take the lead with navigation.

With a mind that’s given to problem-solving, Al-Mohamed can tackle the most cryptic of clues. In fact, these often give her an edge.

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

While most cachers use the visual cues on the map, Al-Mohamed uses the compass in list mode, which guides her to the cache, inch by inch. “It’s kind of like getting hot or cold: Nine feet, eight, seven – okay we’re going well.”

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

Cache found, she lets her companion take over.

“When it comes to sticking hands into strange places I’m going to let somebody else do that.”

Although sometimes, there’s no avoiding the “ick” factor.

“There was one that someone had put on the side of a bike trail. It was a tree with a hollowed out base. My wife put her hand in and she let out a huge scream. And she said, ‘you stick your hand in there!’ I reached my hand in there and let out a scream, and pulled out a giant spider. Somebody had got a giant rubber spider, opened the abdomen in it and put a silver cylinder in there with the cache.”

Being visually impaired, she has to tread more carefully than others over the rough terrain geocachers often traverse. But working in the city has its upsides, and that’s the number of easy-picking caches right on her doorstep, which, due to her work schedule are often hunted at night, with a flashlight.

“In the city it’s more … how you get to it without someone else seeing you,” she says. “Secrecy becomes the more important thing almost than getting to it.”

Cheryl Rankine with members of the Australian Deaf Geocaching group.

The Universal Language of Geocaching

Cheryl Rankine has spent the last nine years geocaching her way around Australia, racking up almost 11,000 finds, or around three a day. Her hobby has sent her across four Australian states, and she regularly meets up with other deaf geocachers for events around the country.

Part of the 30-strong Australian group Deaf Geocaching, Rankine has ready-made friends in all corners of the country. But the language of geocaching is universal, she says, and when she comes across other geocachers she’ll pull out a pen and paper, or even mime to reach common ground.

Not one to shy away from a challenge, Rankine’s dedication to finding caches sees her scrambling through the Australian bush. Despite encountering snakes, and one instance where she was attacked by wasps, she’s determined to get to the most formidable caches, even if it involves climbing a tree.

“I always have a ladder in my car,” she says. “But I need more practice using ropes in trees.”

Rankine relies on visual clues and maps to navigate.

“Geocaching gives me an escape. I will never give up

“Walking in the bush, I keep my eyes open to watch everywhere. I can’t hear background [noise] but I manage to watch everywhere all the time. We even cache at night, with a good strong torch so we can see.”

However, with caching you never quite know what you’ll get, she says. Along with a ladder, she never leaves home without a walking stick, a magnet for accessing out-of-reach small metal boxes, pliers to open nuts, and a mirror. And even with all that prep, she still gets caught out.

“Sometimes, the clue could be song lyrics, and I’ll ask my daughter to listen to the song for me.”

She also contacts the cache owner if she needs a help, or calls the National Relay Service, an interpreting line for the deaf community.

The tenacious woman says she’ll geocache as long as possible.

“If I have many things on my plate at home, geocaching gives me an escape. I will never give up.”


Creative Commons Photo by Flickr user DM.

Disability Q&As Vision & Hearing Loss

This Deaf Medical Student Is Using Microsoft’s HoloLens To Fix A Huge Healthcare Problem

Not enough doctors know American Sign Language to treat deaf patients. That's a problem Ian DeAndrea-Lazarus, who is deaf himself, thinks augmented reality can help solve.

Years ago, Ian DeAndrea-Lazarus, a PhD student at the University of Rochester School of Medicine, was in a car accident in Washington D.C. Another driver had sped through a red light, colliding with his car and sending it spinning. DeAndrea-Lazarus suffered whiplash. When emergency personnel arrived he was put in a stretcher and transported to a nearby hospital. But DeAndrea-Lazarus is deaf: having his neck immobilized eliminated his ability to communicate. “It was incredibly frustrating,” he recalls. “I had to tell the EMTs to come within my field of view if they wanted to talk to me.” When he arrived at the hospital, it took hours for an available American Sign Language (ASL) interpreter to arrive. “This is a common problem for deaf people everywhere,” he laments.

It was frustrating healthcare experiences such as this that pushed DeAndrea-Lazarus, 30, towards medicine. He wanted to make the process better for people like him. Historically, the medical system has not been good for the deaf, resulting in misdiagnoses, poorer health outcomes, and healthcare avoidance. Among non-English speakers, the deaf are at the greatest risk of being misunderstood by healthcare providers. And it is not just from issues with sound. Physicians rely on written En­glish, even though studies show that the deaf community have, on average, lower literacy rates than the hearing; the average deaf high school senior reads between the third and fourth grade levels. Moreover, physicians often view deaf patients strictly in terms of their deafness, looking to “fix the ear,” says DeAndrea-Lazarus, even though “many deaf people don’t view themselves as disabled. They consider themselves to be a part of a linguistic minority. It is the environment that is disabling,” he says.

Historically, the medical system has not been good for the deaf, resulting in misdiagnoses, poorer health outcomes, and healthcare avoidance

Slowly, this is changing. Certainly it has in Rochester, which has the highest per capita concentration of deaf Americans. There, DeAndrea-Lazarus helps run an annual role-reversal program called Deaf Strong Hospital, where hearing students take on the role of patients in a hospital with only ASL-communicating doctors. “Many of my classmates have learned ASL as a result and have reported having positive interactions with deaf patients during their clinical rotations,” says DeAndrea-Lazarus of the program’s impact.

Technology is also having a profound effect on deaf-hearing communication. Currently, DeAndrea-Lazarus is working on a potentially revolutionizing technology: an app that pairs with Microsoft HoloLens, an augmented reality visor, that translates spoken English into text onto the eyeglasses. When released, it will allow deaf people to understand spoken language almost seamlessly, in real time and in the real world. We reached out to hear more.

 

A group of deaf medical advocates gather for the Deaf Strong Hospital

A meeting of Deaf Strong Hospital, a program DeAndra-Lazarus helps run where hearing students take on the role of patients in a hospital with only ASL-communicating doctors.

Why did you get into medicine?

The deaf community is vastly underrepresented in medicine and I saw this as an opportunity to show the world that deaf people, given the right tools, are capable of doing anything they set their mind to. I have also had adverse experiences dealing with healthcare providers who were unfamiliar with the needs of deaf people. I’ve been told that I needed to bring or pay for my own interpreter, for instance, which is a violation of the Americans with Disabilities Act.

The deaf community is vastly underrepresented in medicine and I saw this as an opportunity to show the world that deaf people, given the right tools, are capable of doing anything they set their mind to.

How beneficial is the Deaf Strong Hospital program for medical students?

Deaf Strong Hospital is an opportunity to teach first-year medical students what it is like to experience communication barriers firsthand. All of the students will experience the consequences of misunderstandings and ineffective communication such as being referred to the psychiatrist for an unspecified mental illness, which is something that has historically happened to many deaf people. The students are also given an hour long lecture by me on deaf culture and disparities in healthcare.

I also give examples of “deaf utopias” around the world such as Martha’s Vineyard where there was a high prevalence of hereditary deafness that resulted in the entire community learning sign language, regardless of them being deaf or hearing. People living on that island were no longer disabled by the environment as there was no communication barrier between the deaf and hearing people. I had that experience at Gallaudet, the only deaf university in the world, where I often forgot that I was deaf as everyone around me, deaf or hearing, used ASL to communicate.

A black woman with short hair wearing a Microsoft Hololens augmented-reality headset,

Microsoft’s augmented-reality HoloLens headset could be the key to one day allowing deaf patients to communicate with any doctor without an interpreter, says DeAndrea-Lazarus.

The reaction from the medical students has been overwhelmingly positive. This is also part of why medical school has not been as challenging as I thought it would be. This program should definitely be implemented in every medical school curriculum. Rochester is not the only city with a large deaf population. There are other cities with a high prevalence of deaf people such as Austin, DC, Fremont and Pittsburgh. It is my hope that one day the world will be as accessible to every deaf person as Martha’s Vineyard once was.

How did your idea for the app come about?

As a child, I enjoyed science fiction films such as Minority Report. I imagined a world where we could see text translations of speech occurring around us. The advent of wearable glasses took us closer to making that dream become a reality. A few years ago I obtained Google Glass with funding from the graduate program here and developed a system where I could see real-time captions appearing in my field of view. The captions were being produced by a professional captioner who was listening to an audio feed. The next step was to utilize speech-to-text software to cut out the middleman. Microsoft created the HoloLens, which had voice recognition built-in so I obtained one and developed a simple app that tapped into this ability. The speech-to-text software is pretty good but not nearly as accurate as it needs to be to be used in environments such as medical school where terminology is highly specialized.

Microsoft created the HoloLens, which had voice recognition built-in so I obtained one and developed a simple app that tapped into this ability.

What sorts of responses have you had?

I exhibited my app during a talk I gave during the Association of Medical Professionals with Hearing Losses (AMPHL) conference here in Rochester in 2017 and the reaction was very positive. There was a lot of excitement about the app’s potential to eliminate communication barriers, especially in medicine. However, the HoloLens is somewhat bulky and intrusive so some feel that it presents a physical barrier between the wearer and the speaker. With Moore’s Law in mind, the hardware will become smaller and the computing power will be greater in no time.

A deaf man in glasses wearing a blue shirt has a conversation in sign language with an older brunette in a purple top.

A big problem in hospitals is there aren’t enough interpreters or doctors who understand sign language to communicate with deaf patients.

Do you have any other tech ideas in this realm?

My vision for the future is to tap into the brain’s existing language foundation and cut out the middleman again, which is the wearable device in this case. I imagine a world where we can communicate directly with each other by sending pulses of activity in our brain’s language regions to each other. This would be ideal as this would tap into anyone’s natural first language, instead of mandating that every deaf child learn a spoken language that is not fully accessible to them. Deaf children would be able to acquire a language that is fully accessible to them, visually, and communicate in this language to someone else who may not know this language and still understand them.

If you really think about it, the ear is also a middleman, receiving acoustic signals from the environment and sending it to the brain via electrical pulses. Why don’t we skip the ear and go to the source: the brain? Our brains do not really care whether we receive language through the ears or the eyes. The same pathways are activated in the brain.

My vision for the future is to tap into the brain’s existing language foundation and cut out the middleman agai

What are some other ways in which tech is improving things for deaf people?

There is a ton of technology in general that has been helpful for the deaf community.Hearing aids and cochlear implants give us access to a certain amount of sound. In the United States and now Canada, videophones have given us the ability to make phone calls, whether it is to a deaf person or a hearing person, via Video Relay Services. We are able to use this service on our smartphones via several apps such as Sorenson VRS, Convo Relay, Purple VRS and others. I’ve also found my Apple Watch to be very useful as an alarm clock to help me wake up in the morning (no more relying on bulky, vibrating alarm clocks!). My Ring doorbell communicates with my Philips Hue lightbulbs to let me know when someone is at the door. My Nest Protect sends me a notification and turns my Philips Hue lightbulbs red when there is too much smoke in the kitchen.

My wife, who is also deaf, and I have a three-month old son and we love our Lollipop baby camera, which sends notifications to our iPhones and my Apple Watch whenever my son is crying or moving in his crib. Technology has truly been a friend of the deaf community even though it gives us a hard time sometimes. I think we are moving closer to connecting the entire world, deaf or hearing, as technology advances.

Disability Essays Instagram Vision & Hearing Loss

Falling Back In Love With Music After Deafness

40 years after sudden hearing loss seemingly ended my career as a pop music sensation, I finally learned to embrace my deafness, and become a musician again.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf. Music, as the experts now tell us, is essential to brain health. We’ve always known it filled the soul and senses, transporting us through all the years of our life, good years and bad.

But what if, after a life of composing, singing and playing music, you can no longer hear it or hear it clearly as you once did? What happens to the brain, to your heart and soul—and to you—without it?

At age 29 in my left ear, and then again at 31 in my right, I became deaf-with a small “d.” That little “d” also means “hard of hearing,” “hearing impaired,” “hearing challenged,” “adult onset deafened,” “adult late deafened,” and other sobriquets. I wear a hearing aid in one ear and have no hearing in the other.

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career…

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career that ended when deafness arrived. Starting in 1973 as a 24-year old, I recorded an album for a small record label (Evolution), watched as two songs made it to the Top 100 on the American pop charts, while unbeknownst to me at that time, another song became a #1 hit in Brazil. I was signed to CBS/Epic Records in 1976, and spent the next few years writing and singing national advertising jingles – including a parade theme for Disney called “I’m Walking Right Down the Middle of Main Street USA” which remains today, a Disney staple.

All that and what might have been came crashing down in 1981. Not only could I suddenly not hear as loudly as I once did, but what hearing I had left came with tonal distortion and the constant drone of low and high-pitched tinnitus.

Hello deafness, my new friend. So, what do I do now? I pondered. More importantly, who am I now? My whole identity–that of a socially gregarious man and a successful composer, singer, musician and recording artist—was wrapped up in my ability to hear, and now my hearing had been compromised. I had no idea what to do, no guides to assist me. But I knew I would have to try to adapt myself to this new life without music, and the identity music had given me.

Sudden deafness is tragic and soul-crushing. The inability to communicate “normally” changed my life from one of confident engagement to a life in the shadows. Deafness hindered my simplest interactions and made day-to-day life a maze of compounding difficulties. And it hampered my desire to communicate with others, especially when they were impatient or indifferent to what I was going through.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.  Often called the “invisible disability.” I was happy to keep it that way for as long as I could. I would only admit to being deaf when there was is a “failure to communicate” (often on my part) and I could keep it hidden no longer. I took pains to avoid being grouped with the really, really Deaf, with a capital “D.”   Surely, I was not one of them, and anyway, I didn’t need a support group.

But deafness changed who I was. More than just the hearing aid I wore, it changed the way I lived my life. I avoided loud places, turned down lots of invitations to do fun things, and isolated myself by avoiding people who didn’t know of my “affliction.” And when I did get together with people, I became loud and argumentative, talking over others because that way I didn’t have to listen.

As for music? I rarely ever listened to it anymore. I would sometimes sing, but I knew there was no connection between my singing and the correct pitch of a note or phrase. I was resigned to never being a musician again.

I was resigned to never being a musician again.

Yes, I had jobs, relationships, even married. Yet even within those circumstances my discomfort and awkwardness never really left me. Those feelings only really went away when I hid from others, or went on the road for my job, but being alone much of the time eventually brought me to isolation and despair.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

It was a conspiracy of different events that inspired me to return to music. In 2008, a writer from the Midwest contacted me after finding my album in a remainders bin in a music store and asked me why I never did another. Intrigued, he did an interview with me and wrote a story for his music blog. That story unearthed fans of 30+ years from around the world that I never knew existed. I vowed then to at very least put my first album onto a CD, but I never believed that making music again was in the cards.

But in 2009, I got my first digital hearing aid which allowed me to hear a much broader range of tones and I realized that I might be able to hear what I needed to hear to get back to music making. In 2010, a fan of many years visited me with a wonderful story as to how he had grown up with my music as a lad in South Africa where his Dad ran radio stations. His encouragement played a significant part in moving me forward. Around the same time, my wife passed away at a young age and her death impressed upon me the need to pursue my passion without delay if I ever hoped to give music a try again.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

Lots had changed since I had first become deaf. An auditory trainer brought me up to date on new brain research that indicated that even the small amount of residual hearing I had left might give me enough of a thread to improve my speech comprehension. That would not only help me with my isolation by allowing me to spend more time with others… it had the tantalizing possibility of improving my musical hearing through listening exercises.

Meanwhile, I discovered that hearing aid technology had expanded beyond speech, and now allowed me to hear musical tones I hadn’t heard for years. Galvanized, I worked with a vocal coach to recover my voice, and work breathing techniques and vocal stamina. Phonak, my hearing aid company, not only helped me to launch a Kickstarter campaign to return to music, but also enlisted me to write articles for their blog, Hearing Like Me, about my life with hearing loss. Over the next three years, I wrote more than 35 blog articles and responded to questions and comments not only about music and hearing loss, but also about how to negotiate a life with serious hearing challenges.

This was the “Aha” moment that I believe ultimately saved my life.  For most of my adult life, my hearing loss seemed like a meaningless personal tragedy. I was never able to compensate for it professionally, or to find peace with my new identity as a deaf person. But now that I was connecting to others about my experience through writing, I suddenly found myself coming to peace with who I now was, and the strength to start rebuilding my life in earnest. I now had an international audience of people like me who had endured many of the same things that I had and with whom I could communicate and perhaps even inspire. After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Eventually, I attended my first ever hearing loss community meeting and joined the Association of Adult Musicians with Hearing Loss (AAMHL). I was mortified to learn what I had been missing all these years: peers and new friends who coaxed me out of the shadows, and helped me see that there was more to life after hearing loss.

After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Moving beyond my own deafness reinforced my desire to return to music. While my audiogram has not changed in more than 40 years, I now see that it reveals more than just the defects in my hearing; it also allows me to see what hearing still remains, and target it with new compositions. After two years of training and endless practice, I have returned to performing live. These performances aren’t perfect, of course, but I simply call them “works in progress.” I have even gone back into the studio to record new music, and I’m now planning a busy year including a trip to Brazil to perform for fans who made one of my original compositions a #1 song there in 1974.

Stu Nunnery today, performing in St. Louis.

I could never have imagined that my hearing loss and the tragic narrative that grew out of it would become my redemption; that in rebuilding my connections to music and to my community of peers, I would rediscover joy and my sense of self. I may never regain my hearing, but by finally embracing my abilities in whatever forms they might take, I have finally found peace.

Beethoven is reputed to have said that “playing a wrong note is nothing – but playing without passion is unforgivable.” And famed trumpeter Miles Davis once said that “if you play a wrong note, continue – It’s the next note that counts.”

Whatever your challenges, find the notes to your own song and sing them with passion. They’re perfect just the way you make them.

Disability Health & Fitness

Yoga For The Deaf

Yoga is meant to be inclusive, but far too many practices take hearing for granted. That's something this deaf yoga instructor is trying to change.

I’ve always had very high expectations of myself,” admits Darcy White, a 36-year-old yoga instructor who resides in Washington, D.C., “which I think stems, at least in part, from the need to prove myself to people because I’m deaf. It was making me miserable,” she explains. “Yoga helped me let go of that.”

Darcy has always been an athlete. As a child, she was a gymnast. As a high-school student, she ran cross-country. And in college, she practiced ballet, tap, and jazz. It wasn’t until the age of 26 when Darcy first experimented with yoga. “I went to classes off and on for about six months, but didn’t stick with it,” she says. “I liked the physical workout I got from the Bikram class, but I didn’t stick with them, and looking back I realize that a big reason for that is that I didn’t feel a sense of community.”

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Darcy White teaches yoga classes for the deaf.

For Darcy, a sense of community is key to keep her coming back for more. “A vinyasa flow studio opened up a few blocks from my old place when I was 29 and I became hooked,” she says. “I had just finished grad school and didn’t have anything to do except go to yoga and apply for jobs.”

Whether people turn to yoga for spiritual guidance, exercise, or as a way to unwind after work, it’s safe to say that yoga classes, workshops, and retreats have swept the nation in popularity and availability. Few yoga classes, however, are inclusive for the deaf and hard-of-hearing community.

Few yoga classes are inclusive for the deaf and hard-of-hearing community.

“I’m used to being the only deaf person in the room,” Darcy says. “99 percent of the classes I take are not ASL inclusive because there are so few teachers that teach in sign.”

It can be intimidating and frustrating,” she explains. “I usually let the instructor know that I’m deaf so that they can be sure to face me when speaking to me or providing hands-on assists. Most teachers are sweet and respectful about it. I’m always grateful at the little things that teachers will do without me asking them, such as writing down their dharma talks so I can follow along.”

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She’s pretty good at cartwheels too.

Darcy, who has been deaf since birth, experiences first hand how lonely daily life can be when spaces are not inclusive. 

“I felt isolated in many activities and sports in school when it came to communication barriers,” she explains. “For instance, cross country doesn’t require verbal communication between runners to successfully compete in the sport. But during practice runs, my running mates would chat, laugh, and gossip with each other, and I couldn’t partake in that because I couldn’t run and listen at the same time, and my team didn’t know sign language.

These experiences only motivated Darcy to begin teaching her own yoga classes as a way of serving her community.

Darcy teaches yoga classes and workshops in ASL that are inclusive for the deaf and hard-of-hearing community. As a teacher, Darcy is passionate about respecting people’s identities and intersectional issues that may impact her students. “I’ve developed chair yoga classes in ASL for people who use wheelchairs,” she says as an example.

For Darcy, teaching yoga is all about empowering her students and helping them feel more confident and connected to their bodies. “I love it when deaf and hard-of-hearing students tell me that what a difference it’s made to take a class where they have 100 percent communication access,” she explains. “Several students have mentioned that poses and transitions they observed or tried in non-signing classes suddenly clicked after taking my class. I love that I can help them make that connection. It gives my teaching a sense of purpose.”

Yoga typically provides both a physical and mental workout. For Darcy, who now prioritizes mindfulness on a daily basis, the spiritual aspect of yoga has been surprisingly enriching. “I anticipated the spiritual aspect of it, and didn’t think I’d get into that part of it,” she admits, “but I did and am a better person for it.”

Originally from Iowa, Darcy has lived in D.C. for over a decade, and is happy to find the District’s yoga community to be open-minded and diverse. “I don’t recall anyone ever making me feel uncomfortable in a yoga class because I’m deaf,” she explains.

I don’t recall anyone ever making me feel uncomfortable in a yoga class because I’m deaf,

But while yoga classes are generally friendly, it does not guarantee that they are inclusive. “The typical yoga class is tailored to the general population,” she says, “and is not taught with the intent of meeting specific needs, such as communication access, for the deaf community.”

Incorporating inclusive practices into the classroom is important, but often takes time to develop and perfect. While some teachers feel overwhelmed and even discouraged while working towards inclusivity, Darcy promises that it’s all about progress, not perfection.

“I would never expect a teacher to be able to meet the needs of every student in class–I certainly can’t–but I think the least that teachers can do is ask questions on how they can help make the class more welcoming and accessible, keep an open mind, and be flexible with accommodations.”

While society is constantly moving towards a more progressive and inclusive world, many people are still misinformed or uneducated about issues for the deaf community, including how to interact with people who may be deaf or hard-of-hearing.

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Posing near some inspiring graffiti.

“A good rule of thumb,” Darcy explains, “is to talk to people the way you’d want them to talk to you, at a normal pace and volume. Most deaf and hard-of-hearing people can’t lip-read, and cochlear implants don’t cure hearing loss.” And while Darcy teaches her classes in ASL, she notes that it is important to remember that sign language is not universal, and typically varies by country.

More than happy to pave her own way and lead on her own, Darcy is still grateful for the deaf community in D.C. “We’re small enough that we all know each other or have a mutual friend,” she explains. She recognizes, too, that many people lack community and support, and may feel gauche or out of place attending a new class or workshop.

“I completely understand why a deaf or hard-of-hearing person would not feel comfortable attending a class that’s not accessible to them,” she explains, “so I would never push them to participate. Unfortunately, a non-signing class is often the only option, so if that’s the case, I’d encourage them to find another deaf or hard-of-hearing person to go with them for support.”

Ultimately, Darcy encourages everyone who is interested in yoga to give it a try, even if they do not see themselves as an athlete, or even flexible. “People seem to think you need to be flexible to do yoga,” she jokes. “You don’t! Yoga will make you flexible.”

Yoga will make you flexible.

But for Darcy, the benefits of yoga go beyond flexibility and grace. “Yoga has helped me become more self-aware of when I start to go back down that path of needing to be better and more successful,” she explains. “Yoga helps me to tune into how I’m feeling physically, mentally, and emotionally, which helps me to take better care of myself and to have self-compassion.”

Disability Profiles Vision & Hearing Loss

Charting Her Own Flight Plan

A hearing disability grounded K. Renee Horton from becoming an astronaut. But it didn’t stop her from realizing her dream of working at NASA.

For as long as physicist K. Renee Horton can remember, she has wanted to be a scientist.

Every Christmas growing up, in fact, the young Horton taxed both Santa’s wallet and patience with her STEM enthusiasm.

“I would be like, ‘I only want a telescope.’ Or, ‘I only want a microscope,’” she says. “My dad kept saying, ‘Is there nothing else? You need to give Santa a range here.’”

Photo: Alendar Iejo

“I’m almost certain when my parents’ egg and sperm met, one of them said, ‘I’m going to be a scientist,’ and the other one said, ‘I’m going to make that happen.’ It was in my core.”

Horton is the Lead Metallic and Weld Engineer for the Space Launch System (SLS) at NASA’s Michoud Assembly Facility in New Orleans, LA. Designed to enable deep-space exploration, the SLS will be the largest, most powerful rocket ever built.

“My job is to make sure that the welds and anything metal on the [SLS] rocket are good after we’ve built and put it together,” she says. “I am the person who oversees the requirements that deal with metals and welds.”

It’s inevitable — nearly impossible not to, even — to categorize Horton as her own kind of Hidden Figure. As a black woman in STEM and one of the self-described “SLS boots on the ground,” Horton and her work at NASA — though unlikely to make headlines directly — will be instrumental in sending the first human beings to Mars.

Factor in that she’s also a bald, hard-of-hearing, former college dropout and mother of three, and Horton breaks every fusty mold of the white male scientist stereotype. But doing so hasn’t been easy, particularly where her hearing was concerned.

Factor in that she’s also a bald, hard-of-hearing, former college dropout and mother of three, and Horton breaks every fusty mold of the white male scientist stereotype.

“I have a disability that you don’t see,” Horton says. “If somebody’s in a wheelchair, you’re like, ‘Oh, they need a ramp.’ But if I tell you I need CART services [real-time captioning], you’re looking at me like, ‘Are you privileged or entitled?’ So there were things I just didn’t do for a very long time.”

“Then I woke up one morning, and said, To hell with this. The world is going to give me what’s mine.”

The Right Stuff

Hearing loss is a recessive genetic trait that runs in Horton’s family but hadn’t surfaced for generations — if ever. “None of my living relatives knew anybody in our family who was deaf or hard of hearing,” she says. “I’m a freak of nature.”

A Baton Rouge native, Horton describes her condition as hearing loss in both ears, with the right being more pronounced. She can hear most sounds at high and low frequencies, but has trouble in the speaking range, making conversation and active listening challenging.

While representation and access for people with disabilities in STEM fields remains low, Horton says NASA in particular is “very good” about hiring and accommodating people with disabilities. In fact, the level of accommodations NASA provides impressed her so much as an intern that she “knew NASA was the place for me.” Horton completed her dissertation work with NASA and got her first industry job out of grad school there as a mechanical test engineer in 2012. She’s been with the organization ever since.

At work at NASA’s Michoud Assembly Facility. Photo: NASA, Steven Seipel

Horton spends much of her workday in office environments, so her personal accommodation needs at NASA are low. She wears digital hearing aids in both ears, and most of her colleagues, she says, are “very accommodating” when asked to repeat something or share notes in meetings.

Of course, conditions aren’t perfect. When Horton visits remote sites, such arrangements are harder to come by, and she must often remind her colleagues of practical realities.

“I love SLS. Every day we’re doing something that’s moving toward history. It’s really an amazing feeling to be a part of it. That’s my rocket that’s in there.”

“Like, ‘I can’t be the secretary, guys,’” she says. “I don’t even make it a woman issue. You don’t ask the deaf person to be the person to take the notes.”

Horton must also be particularly vigilant when navigating Michoud’s industrial plant (where the SLS is being built), an environment much larger — and louder — than your average office space.

“I have to be more aware of my surroundings in the factory because the noise drowns out voices most times. I do a lot of lip reading when out in the factory. Sometimes I do have to remind those I work with that I am hearing impaired so that they can face me when speaking. I am also very aware of where I sit in certain situations.”

Despite these necessities, however, that factory environment — or rather, what it contains — is part of what drew Horton to Michoud in the first place.

“I would come down here to visit [Michoud], and I would be sick or crying when it was time to go back,” she says. “I wanted be with the hardware. I wanted to see it every day. It actually limits my advancement, my promotion-ability, to be here. But that innate happiness that comes with being here is more than anything financial could ever give me.”

That happiness in evident in Horton’s every word about her job. “I love SLS. Every day we’re doing something that’s moving toward history. It’s really an amazing feeling to be a part of it. That’s my rocket that’s in there.”

Grounded

Horton’s journey to Michoud, however, was very nearly scrubbed before it began.

Horton’s hearing loss manifested for her as a young child as a shouting voice and trouble following teachers’ instructions. No one thought at the time to test her hearing. Instead she was labeled with the then-common term “retarded” and placed in special education classes.

“I was constantly yelling to hear myself, so they taught me how to speak and not to yell,” she says. “They also got rid of my Louisiana drawl accent and taught me not to talk with that clipped sound that people who are hearing impaired end up with.”

Horton’s speech therapist recommended she be transferred out of remedial classes and tested for the gifted program instead. The move aligned well with Horton’s strengths: while she had difficulty comprehending and interacting in the traditional classroom, she excelled at the gifted program’s independent study format.

Inspiring a new generation of engineers. Photo: NASA, Steve Seipel

Despite this initial hiccup, Horton advanced quickly through her education, finishing high school at age 16. By then she’d had her cosmic career plan all worked out: join the Air Force, then proceed on the path to becoming an astronaut.

“I didn’t know anything else,” she says, “but I wanted to work for NASA.”

But her plans went into free fall when she failed the hearing test of a routine Air Force ROTC physical.

“I didn’t know anything else,” she says, “but I wanted to work for NASA.”

Horton had already been struggling in her undergraduate courses at Louisiana State University (LSU) because of her as-yet-undiagnosed hearing condition. But the results of that hearing test knocked her completely off her trajectory. Because of her hearing, Horton was disqualified from becoming a pilot. And, by extension, an astronaut.

“I didn’t know who I was anymore. My whole life had crashed in front of my eyes before I turned 18.”

Describing the thoughts running through her head at the time, Horton surmised that “maybe I’m not whole as a person. Maybe God doesn’t love me because He did this to me. Maybe I’m not worthy because I’m defective.”

Lost and frustrated by her lot in life, Horton dropped out. She got married, had three children, worked odd jobs. As for her newfound disability, she decided “to ignore it” — a choice, she admits, affected not only her studies, but her marriage as well.

But she didn’t give up science forever. In 2000, now divorced and raising three children between the ages of one and nine, Horton returned to LSU. The technology and services existed to support her and accommodate her disability. But first she had to ask for them.

“I remember walking into the vocational rehabilitation center in Baton Rouge and telling them I wanted to go back to college, but my ears were broken,” she says. “I was 27. It took me ten years to accept my ears were broken and needed help. Ten years.”

A New Mission

At LSU Horton got her first pair of hearing aids, early analog devices that she describes as “huge.” “It looked like a big bug was behind my ear,” she says, “so I grew my hair to cover it.”

LSU also provided Horton the use of an assisted listening system, in which lecturers wear a special microphone that pipes their speech directly into a pair of earphones.

This second time around, Horton also chose to play to her strengths, focusing her studies on programs that emphasized reading-based learning over heavy lectures.

“I wanted what was inside of me fundamentally more than I wanted to allow the hearing impairment to stop me,” she says. “So I looked for ways to be able to be successful.”

Crediting this newfound combination of adaptability and acceptance — plus the support of her children and a lot of hard work — Horton graduated LSU with a BS in electrical engineering. A few years later, she became the first African-American to earn a PhD in materials science from the University of Alabama.

Photo: Alexander Iejo

Horton now travels regularly doing speaking engagements and outreach to help others pursue and succeed in STEM, and posts regular affirmations on Twitter. This year she also started a nonprofit organization called Unapologetically Being to help others feel confident about themselves and about requesting accommodations.

In that vein, she has since stopped hiding her hearing aids: three years ago, in solidarity with an aunt with cancer, Horton shaved her head.

“I wanted what was inside of me fundamentally more than I wanted to allow the hearing impairment to stop me.”

Leery of the results at first, she caught sight of herself — hearing aids and all — in the mirror one day, glowing, and realized, “I was forty-something, and I was looking at Renee for the first time.” The style has stuck ever since.

As for her childhood dreams, Horton never got to become an astronaut, but she did land that dream job at NASA. And she’s already traveled to space.

Just months after returning to NASA after graduation, she was assigned to the Orion spacecraft project, the vehicle that will carry the crew via the SLS to Mars and NASA’s first deep-space launch since Apollo. As part of the project team, Horton was able to write her name — as well as those of her parents, children, and sister — on the Orion vehicle itself. The Orion test-flight launched in December 2014.

“I was all giddy like a kid that my Christmas gift had finally come,” Horton says. “My name got to go into space. It was my way of going into space.”

Disability The Good Fight Vision & Hearing Loss

Slice Of The Pie

This deaf-owned San Francisco pizzeria has an inventive business model, and an even more inventive menu.

In this humble San Francisco Mission district pizzeria, there’s a slight hush whenever anyone new enters. The quiet persists after the newcomers are seated at one of the dozen or so tables situated in the deep dining room. It’s not totally silent–there’s indie rock soundtrack playing in the background–but mostly, the only sounds are of guests having soft conversations, if they’re talking at all. And the quiet persists even when it’s time to order, when guests pick out their pies by pointing at a two-sided menu while a server stands attentively by.

Considering how raucous most pizzerias are, Mozzeria’s subdued atmosphere might seem like a bad sign. Instead, silence is in the very DNA of the business, because everyone working at Mozzeria is deaf.

A Pizza Dream

Operated by Russ and Melody Stein, the married owners who opened the popular spot more than five years ago, Mozzeria is California’s first and perhaps only deaf-owned and operated pizzeria. The restaurant specializes in Neapolitan-style individual-serving pies baked to order in a Stefano Ferrera wood-burning oven. The doughy crust, with just a hint of salt, is the perfect canvas for the pizza chefs to put their personal touch on the pies. Fresh salads, housemade desserts, and cold wines by the glass and beers on tap round out the simple but satisfying menu.

Mozzeria’s owners Russ and Melody Stein. Photo: Gene X. Hwang

During a period when the couple was trying to decide on the next phase of their professional lives, Melody spotted a cooking course in Italy and knew what she had to do. She flew out within two weeks, and within months, the seeds were planted for Mozzeria to grow. Today, she manages the restaurant’s day-to-day operations, while Russ handles more of the bookkeeping and bottom line projections.

All of Mozzeria’s employees are deaf or hard-of-hearing.

“I grew up in an environment where I was introduced to interesting food,” Melody explains. “When I opened Mozzeria [in 2011], I wanted our menu to be a bit distant from our competitors, and for our pizzas to have some Asian influence.” Accordingly, traditional styles such as a tomato, mozzarella, and fresh basil Margherita complement the menu’s more inventive options, such as succulent Peking duck and Hosui pear—evidence of the combined Stein family influences, from childhoods spent in Hong Kong, New York, and California.

The pies may be creative, but the business isn’t an improbable departure for Melody, now a third-generation restaurateur. Most of her family members own some sort of restaurant or food-related business. She credits her father, the renowned Bay Area restaurateur Francis Tsai, as her inspiration for wanting to open her own restaurant. Before bringing Melody and her brother to the States to attend the California School of the Deaf, Tsai opened a string of bistros in Hong Kong and Shanghai, including Hong Kong’s first disco after a stint running the food and beverage program at legendary New York club Studio 54.

You could say good fun and good food runs in the family.

Recipe For Success

Deaf-owned businesses are not tracked as a category by any government agencies. Until 2009, the now-defunct National Deaf Business Institute maintained a database, which at the time counted more than 600 deaf-owned enterprises in the United States. Some now estimate there may be more than a thousand deaf-owned businesses nationwide, though the task of keeping track falls largely to experts who can intelligently guess at such numbers.

If you haven’t experienced it, partial or total hearing loss may not seem as menacing an obstacle as certain physical limitations that might, at first glance, more obviously impact one’s ability to work. But when you consider the tasks required in many entry and mid-level jobs and career tracks, hearing loss can be a significant barrier to entry.

Mozzeria’s Mission location contains wall art of the pizzeria’s signature pizza trolley. Photo: Gene X. Hwang

That’s why Mozzeria is more important than just the pizzas it serves. By investing time and resources in training people seeking a deaf-friendly work environment, the Steins have made sure that their employees feel personally invested in the restaurant’s success. It’s also basic business acumen. Because they feel personally invested in their work, employee turnover at Mozzeria is low: of the restaurant’s 15 employees, more than half have been there for over a year, a statistic nearly unheard-of in the pizza business.

Our employees always wanted to have a chance, but restaurants rejected them immediately once they learned they are deaf.

“I think of Mozzeria as a teaching restaurant,” Melody explains. The all-deaf staff is mostly comprised of employees without any traditional restaurant experience; owners of other food service establishments rejected those who tried to get jobs at other restaurants they learned the applicants could not hear.

“[Our employees] tell me that they always wanted to have a chance, but restaurants rejected them immediately once they learned they are deaf.” It’s a common, chronic issue in the deaf community. “Deaf people [can struggle] to find a job,” Melody adds, noting those who work for her are happy to have finally found their place.

But Mozzeria isn’t just popular with its employees. Customers love it too, and not just the deaf ones: in fact, Russ estimates up to 95% of the pizzeria’s customers are not deaf or hard-of-hearing. How do they communicate with staff? Tech to the rescue.

 

Because the restaurant operates in a tech-centric city, the use of CONVO, a video relay systems (VRS) for phone orders and reservations, makes Mozzeria easy to access for both deaf and hearing patrons alike. When a caller dials the restaurant, a VRS translator listens to the speaker and signs the message over the video call screen to a Mozzeria employee, who in turn answers by signing, which is then relayed by voice to the hearing caller. VRS is the same technology that was a part of Russ’s early career, so it makes perfect sense that Mozzeria would rely  on the assistive technology.

There are also low-tech solutions when guests dine in at the restaurant. Simply pointing is the way most guests order. There are also Mozzeria-branded pens are liberally strewn about the café, making it easy to jot down a question or a custom pie. And in the kitchen, all the staffers sign to one another, often offering a tap on the shoulder to get someone’s attention.

Melody notes that  some guests are surprised when they come into Mozzeria for the first time, but they soon get used to it. “Once they try our food, [patrons forget] about our being deaf and come in for the food,” she explains. “Eventually, they learn some American Sign Language,” such as the sign for “thank you”: a flat right palm lowered from the mouth.

A San Francisco Treat

Teaching San Franciscans about the deaf community while sweetening the deal with delicious pizza is an integral part of Mozzeria’s mission. So on top of the pizzeria’s Mission location, it operates two trolleys, which sell pizza in different parts of San Francisco every day of the week.

Usually, food trucks are how aspiring restauranteurs test their concepts before opening a brick-and-mortar bistro. But with Mozzeria, it was the opposite: demand for the pizzas  pushed the Steins to purchase the first of their two mobile pizzas trolleys in 2014 after customers wondered why a back-of-a-truck oven available couldn’t become a permanent fixture in a town wild for food trucks.

One of Mozzeria’s mobile pizza trucks.

Despite the fact that San Francisco is famous for its cable car street trolley system, the first trolley that became the Mozzeria mobile unit wasn’t located in SF—or even in California. Rather, the touring trolley built for short-distance tourist excursions was in Florida. Still, the Steins knew they had to have it. In a restaurant, customers come to you. With a truck–or, for that matter, a trolley–you can take your food to the people. A 3,000-mile road trip ensued, with stops at several deaf schools along the route home. “We shared our story with deaf students, encouraging them to dream big,” Melody explains. Before they took the wheel and drove it to California, the trolley had never been more than a 30-mile radius from its home base.

By taking delicious pies to the people, the Mozzeria crew creates new opportunities to teach the local community about interacting with deaf drivers and chefs. Slightly more limited than the brick-and-mortar pizzeria, the trolley’s deceptively simple menu offers a range of choices each marked by a letter. Patrons sign the letter corresponding to the pizza they want, a staffer writes the amount due on a white board, and a short wait later, a piping hot personal pizza comes out of the trolley-mounted oven.

To make a mark on the notoriously oversaturated San Francisco food scene is no small feat, especially in a city where exclusivity and eccentricity are both highly valued. The community it was built to serve eagerly supports Mozzeria, but in the end, its recipe for success is serving the entire spectrum of Bay Area customers. Any way you slice it, that’s a well-rounded approach.

 

Disability The Good Fight Vision & Hearing Loss

Why Inclusivity Is Important, From Obama’s Champion Of Change

Deafblind activist Haben Girma explains why every company should design with inclusivity in mind.

Disability rights advocate Haben Girma has given a TEDx Talk, met with President Obama as a White House Champion of Change, and presented on the importance of inclusive design at Apple’s Worldwide Developers Conference (WWDC) 2016, helping iPhone and iPad developers understand why they should design with the disabled in mind.

She’s also the daughter of refugees and the first Deafblind person to graduate from Harvard Law School.

But don’t get carried away and call her an “inspiration” or say that “she’s overcome obstacles.” Girma shies away from that kind of language. Instead, as she writes on her website, “the biggest barriers exist not in the person, but in the physical, social, and digital environment.”

Haben Girma outside the U.S. Capitol with her trusty friend, Maxine.

Armed with her law degree and a spirit of determination, she’s fought those barriers for herself and others. She put pressure on digital library Scridb  until it made its collection of documents accessible to people using screen-reading software. She urged TEDx Talks to caption their videos for the Deaf and hard of hearing community. (They captioned her talk but many more videos remain inaccessible to those who cannot hear.) She’s also called out Uber drivers for failing to accept her service dog in violation of the Americans with Disabilities Act.  

In addition, Girma urges app developers to ensure that their technology is inclusive to people with disabilities. In her WWDC presentation, she compares it to constructing a building with an elevator from the start instead of adding one later.

In between trips around the world to present on disability rights and inclusion, Girma has tried surfing, rock-climbing and loves to salsa dance.

Folks talked with Girma via Skype chat (she uses a Braille keyboard or listens to VoiceOver at the high frequency she can hear) about why inclusive technology matters and how she’s spreading that message. The following excerpts have been edited for clarity and flow.

What misconceptions about being Deafblind do you encounter and how do you challenge them?

People assume my disability will prevent me from doing things like rock climbing or law school. I go ahead and do it anyways. Disability is not a barrier to overcome. Negative stereotypes and low expectations are the biggest barriers.

Do those negative stereotypes/low expectations ever make you feel lonely or isolated?

Over the years I have developed a strong community of friends who share my values.

Haben Girma and President Barack Obama during the Americans with Disabilities Act 25th Anniversary reception. (Official White House Photo by Pete Souza)

Why do you think inclusive technology is important, not just for people with disabilities but everyone?

We build better products when we plan for access from the start. Everyone gets a higher quality product. The business gains access to a bigger market. There are about 57 million Americans with disabilities, and 1.3 billion people with disabilities worldwide. Businesses also avoid the costs of litigation from ADA violations. A lot of people build products and think, “We’re just a startup. We’ll figure out accessibility later.” Trying to make something accessible after it has already been built is more expensive and time-consuming.

What do developers need to keep in mind, since the needs of people with different disabilities can be diverse?

Apple’s guidelines for iOS include access for Deaf individuals (captions), access for folks with mobility disabilities, and other disabilities. Apple has accessibility guidelines for developers. Android has guidelines, too. For websites there is the Web Content Accessibility Guidelines.

So, the information is there but the gap is in implementation and knowledge?

Exactly.

Haben Girma enjoys her first surfing lesson in San Diego.

What do you have planned for 2017? More work on inclusive technology?

Yes, this year I have many presentations on disability rights/inclusion. Most in the US. Some abroad, too.

What is your favorite country that you’ve visited so far?

Several years ago I visited Spain and loved it. Great food, great people, and great salsa.

Haben Girma plays with her German Shepherd, Maxine, at the Berkley Marina.

How did you get into salsa dancing?  

A blind dance instructor gave me my first salsa lesson. I have been dancing ever since.

Is there anything else you’d like readers to know about your work or inclusivity in general?

Disability adds value to our lives. We all benefit when people with diverse experiences have a voice at the table. Let’s all work to ensure that our communities are inclusive to everyone.

 

Profiles Vision & Hearing Loss

Tripping The Light Fantastic

After his own isolated childhood, professional dancer Antoine Hunter works to share the gifts of deaf and hard of hearing dancers with the world.

In his more than 15 years as a professional dancer, California artist Antoine Hunter has played many parts: performer, choreographer, director, poet, advocate. Although he is quick to emphasize the significance of family above all else (“nothing is of greater importance,” he says via email), he cites his roles as teacher and producer as his most professionally notable, both for their potential to pass on knowledge and to create opportunities, building bridges and providing platforms where they aren’t typically available to Deaf people like himself.

“I love to see the world come together,” he explains. “Being broken apart is really lonely.” Hunter understands loneliness all too well.

Photo: R.J. Muna

Hunter is the founder and artistic director of Urban Jazz Dance, a company of deaf and hard of hearing dancers based in San Francisco’s East Bay Area aimed at empowering underserved artists and communities. Under Hunter, Urban Jazz Dance produces the annual Bay Area International Dance Festival, a showcase for deaf and hard of hearing performers that grew in such popularity that he had to add “international” to its title to represent the numbers of artists from abroad interested in participating. Hunter has won numerous arts and advocacy awards; maintains what appears to be an exhausting schedule of local, national, and international teaching and touring; and has performed in venues as varied as the Kennedy Center, Disneyland, and the Oregon Shakespeare Festival.

But Hunter spent much of his childhood in West Oakland struggling to connect with people. Born completely deaf in one ear and with 5% hearing in the other, he felt like an outcast, mocked and rejected by both adults and children: at times for being black, at times for being deaf, at times for not being deaf enough.

 

Hunter does not equivocate about the deep loneliness he experienced growing up. By the time he was a teenager, a lifetime of social isolation and the struggle to be heard had driven Hunter to contemplate suicide.

“When you can’t express yourself, you lose your mind,” he says. “Dance saved my life and gave me the ability to communicate with other people.”

“Dance saved my life and gave me the ability to communicate with other people.”

Hunter had been fascinated by dance since even before his mother had taken him to a performance of the Oakland Ballet’s The Nutcracker at the age of eight. He marveled at the communication and interaction inherent in dance and determined to become a professional dancer despite the myriad voices telling him it would be impossible. Too poor to afford lessons, Hunter didn’t take his first dance classes until they were offered as part of his high school curriculum.

Dance’s salvation, however, was far from instantaneous. When Hunter’s teacher instructed his class to pair off for a group project, he found himself with no one to partner with. Alone, he poured his struggles and frustrations into a solo choreographed to Whitney Houston’s “I Will Always Love You.” When he finished the performance, his classmates responded, saying they could feel the pain and confinement he had sought to convey.

He had finally broken through. Through the movements of his body, Hunter had found his voice.

Photo: Matt Haber

Hunter strives to create a space in which his students and colleagues can feel that kind of freedom, where they are able to express in their own ways and thrive as their best, most authentic selves.

“Some people say I’m like Professor Black Deaf Charles X, helping mutants understand about their powers,” he says. “Well, I’ll tell you this: you don’t need to be a mutant to understand your gifts.”

“You don’t need to be a mutant to understand your gifts.”

That’s not to say achieving success as a deaf dancer in a predominantly hearing industry is easy, however. Hunter estimates he’s had to work eight times harder than most to get to where he is.

Without the benefit of sound to synchronize movement, dance relies more heavily on visual cues, which can range from the conspicuous – like following one dancer’s lead or an offstage prompter – to the subtle, like the way a particular light trembles with the music’s vibrations.

Photo: Richard Downing

For a scored piece, Hunter spends many hours up close and personal with his speakers, memorizing a song’s rhythms and incorporating its structure into his body like a muscle memory. He says he spent most of his high school and college learning years waking up at 5 a.m. to rehearse for hours before classes began at 8.

“People would ask me how I warmed up so fast before class,” he says. “No one knew I was always there early in the morning.”

Without an American Sign Language (ASL) interpreter on hand, Hunter says learning can become like an exercise in “try[ing] to feel or read the mind of every teacher you have.” That difference in communication can create an unnecessary barrier to progress.

 

By conducting his classes in ASL and creating an inclusive, encouraging environment, Hunter raises the bar on what Deaf dancers can expect, not only of themselves but for themselves.

“Sometimes in the Deaf world, we who are Deaf … we don’t get to experience high expectations from others. Many have low expectations for Deaf people,” Hunter says. “So sometimes when I work with a dancer, they’re shocked how much attention they are getting from me and how much work they are doing. Some Deaf dancers are like, ‘My teacher would never encourage me to keep going when I felt like giving up, but you tell me, “Don’t stop,” and [that] I’m almost there. I can actually be Deaf while taking a class from a Deaf man.’”

Hunter notes that hearing dancers could also learn a thing or two from their Deaf colleagues’ methods. Dance is, after all, its own form of communication through signs, and when music is purely optional, a dancer must find their motivation in an internal message and melody rather than from the regimentation of an external metronome.

Photo: Matt Haber

“Many hearing dancers take their hearing for granted when they dance. Sometimes they don’t really dance to the music or with the music; they dance without expression,” he says. “With deaf dancers, we try to be alert to everything around us and dance to every beat we feel. It’s hard not to be expressive, because with American Sign Language or Deaf culture, it means to communicate. And in dance we love to communicate.”

That drive to communicate underlies all of Hunter’s work. He teaches and performs a variety of styles, including ballet, jazz, African, and hip-hop, using his full body to express his message and often incorporating ASL into his choreography.

Perhaps the greatest message Hunter strives to convey to both deaf and hearing audiences, whether through his work or his conversation, is that Deaf culture represents not a disability but a difference: an identity and an intrinsic way of experiencing, negotiating, and interacting with the world.

Deaf culture represents not a disability but a difference… an intrinsic way of experiencing, negotiating, and interacting with the world.

“Being Deaf doesn’t mean you can’t do things and that you need to be fixed. I strongly believe that being Deaf is alive in me, and it is a gift. It’s in my roots. It gives me a reason to create,” he says. “When I see Deaf people from all over the world, I notice we do many things the same or in common as every [other] Deaf person. It’s like being black. We maybe have never seen African dance, but when the music comes on, we can’t help but shake our hips. It’s in our DNA. Being Deaf makes me powerful, and I know it’s my duty to use this power well to change the world into something a little more beautiful.”

 

Disability Q&As Vision & Hearing Loss

Hearing The Call Of The Tuba Thieves

The binaural hearing loss of visual artist Alison O'Daniel informs every aspect of her serene and sometimes surreal art.

When Alison O’Daniel was a toddler, her parents knew something was wrong. Biting, pinching, kicking, and screaming, she constantly showed intense signs of frustration. It wasn’t until Alison was three, and they moved to the family’s first two-story house, that they figured it out. Alison fell down the stairs, and they realized something was off with her equilibrium. That led them to discover that Alison is hard-of-hearing.

Now grownup, Alison is a visual and performance artist and filmmaker whose installations mix both mediums together. Her work is informed by her hearing, and the unique way it shapes her experience of the world. Although still sometimes frustrated, it is no longer about an unknown condition, so much as it is by large existential questions such as the political nature of the art world, what it means to be an artist in a classist system, and how to observe the stars.

Folks sat down with O’Daniel to talk about the intersection between her hearing and work, as well as things  that are “not meant to be articulated.”

When did you start making art? And when did it go from making art to deciding, “I want to be an artist”?

I grew up with my grandma, who was an artist. She made Swedish folk crafts and paintings. My aunt and uncle are super ’60s hippy potters. They built their own house with a studio in the basement in the countryside in upstate New York, so that was my example of being an artist. I aspired to be like them. I thought they were the coolest people ever. Their lifestyle was super attractive.

When I was a kid, I was a figure skater, and I think that’s when I really started being an artist. When I was in high school, I stopped figure skating ,and moved into theater. I didn’t understand performance art yet, but I was trying to pull theater into that, because maintaining a central focus on the body in space was the way I began my art.

I also started taking visual art classes in public school, which was liberal but very two-dimensionally focused. Then I went to art school. I never even questioned being an artist, but now I do, with practical questions.

What are those practical questions?

I have a thousand million questions. What are the politics of the art world? Why is it such a class-based system? What do you do a few years out of art school when you are faced with the demands of daily life? Like I said, practical questions.

Any recently stumbled upon answers?

Not fully formed answers, but some suspicions that I have to turn this part of my brain off for a while and give myself a break. How do you prioritize love and making? I’m thinking a lot about a statement that’s in my film, The Plants Are Protected. The closed captions are a quote from a physicist who once wrote to [famed Russian director Andrei] Tarkovsky about the experience of watching his film: “You have to watch it like you look at the sea, the stars, the landscape.” The answer for me now is in this sentence.

Can you tell me about your hearing loss?

Sure. I have what’s called binaural hearing loss. It’s in both ears, about the same degree in both. I have to use hearing aids, and I read lips. 

Every person’s hearing loss is radically different, and that’s interesting to me. I have “moderate to severe hearing impairment.” I have a hard time hearing consonants. I lose a lot of what’s said in speech, but I’ve compensated with a highly developed skill set. I fill in the gaps, so I can keep up really well… so well that most people have no idea that I’m hard of hearing. I have long hair, so you can’t see my hearing aids, and I don’t have a speech impediment.  I’m losing a lot with speech all the time, but I have a highly developed skill set for compensation. I can fill things in and keep up really well. 

How does it play into your day-to-day life?

It plays out in miscommunications. I’m constantly having awkward interactions and it takes people a while to realize what’s going on. I’m not shy about it at all; I’m a total advocate for myself. But I’m 36, and I still experience daily  frustration trying to get things to work. 

First encounters [with new people]–I would go as far as to say they can be traumatizing. I feel like I have a cumbersome relationship to social interaction. People often feel I’m cold or standoffish or bitchy, just because I’m missing many of the things that are being said. I overcompensate by being nicer than I necessarily have the impulse to be, but really, I just want to stand and observe. 

Does it bother you when people are always asking how your hearing informs your work?  I want to ask that but I don’t want to pigeonhole you.

We’re in a cultural moment that’s so much about diversity, which is fucking awesome. But at the same time, I don’t want to be a woman artist, I just want to be an artist. But I think the awareness is good because, for example, it draws attention to the language we use. For example, for those who are hard of hearing, the term “hearing-impaired” is super offensive because impairment implies something has been taken away. I want my experience to be my own starting point, like it is in my art. I start from where I am, and it has opened me up visually to being able to perceive the world in beautiful ways. How is that impairment?

OK, take your film, Night Sky. How is it informed by your relationship to hearing?

I kind of consider that a self-portrait. I was trying to get to the bottom of the ambiguity of my experience [as a person who is hard-of-hearing]. The choices about the characters, their relationships, the visuals: they’re all designed to be hard for the viewer to place.

There’s a scene where a girl puts her hands on a fence, and when she does, the fence becomes a transmitter, almost like hearing aids. The voice that comes through to her then is a monologue by a deaf woman.

There are parts of the film that a hearing audience won’t get, and parts of the film that thee deaf part of the audience won’t understand. I consciously chose  to make the film so that, deaf or not, you’re still not given total access. That mirrors my experience. But I want my next film to be accessible to everyone.

So you’re changing that in your current work? What’s the new direction?

Yes. My current project, The Tuba Thieves, is unfolding in an untraditional way. I started this one in 2013 and I have no idea when the end is. It’s a direct reaction to Night Sky.

My good friend and collaborator Ethan Frederick Green died this year, and that’s on my mind a lot. So he is 100% not accessible to me any more and I’ve been thinking of how to honor that relationship.

Ethan worked for me over a long period of time on the music in Night Sky. He made changes as the edit went along which is a long, laborious relationship for a composer. I was touched by that role, so for The Tuba Thieves,  I wanted to flip our roles. I had him write music, and then I would direct a film that responded to his audio.

What’s the meaning of the title? What’s are the ideas you’re exploring in The Tuba Thieves

A while back, I started hearing about tubas being stolen from high schools. I thought that was a weird and crazy crime epidemic, so I started keeping notes. The press always talked about the thieves, but I wondered about the students: what happened in their band classes, and how did the music they had to play sound without tubas? You know, the micro-narratives nobody was talking about. So I started reaching out to band directors, and visiting the schools to talk to the students. That’s where the title came from, even though the film itself has neither tubas nor thieves in it.

The film is based around a woman who is a deaf drummer who was featured in Night Sky. I asked two other composers besides Ethan to write a musical score, then gave them a random list of things to consider, which I would write the film about. The goal was to do the film backwards; I wanted the elements of real-life and the relationship of the drummer and the composer to be what pushed the film into shape.

It’s not done yet, but I have a finished screenplay, and I show it at installations, even though it has missing parts. It’s like that quote that obsesses me: the experience of watching it is how you look at the sea, the stars, a landscape. It’s experiential beyond language. Everything is touching and connected, but the way it is connected is ephemeral.

Editor’s note: This interview has been edited for grammar, length, and clarity.