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Chronic Illness Disability

The Future Of Health Care Tech In Africa

Chronic illness and disability are on the rise in Africa. Luckily, so are clever African entrepreneurs, who are hacking the local health care system in revolutionary ways.

Africa confronts the world’s most dramatic public health crisis. Between countries battling with HIV/AIDS, malaria, high rates of maternal and newborn mortality as well as increasing rates of noncommunicable diseases health systems are straining.

But healthcare tech entrepreneurs are working across the continent to create solutions for the issues their communities face, and often innovative apps or accessible electronic equipment are working to lessen the burdens healthcare providers face, or provide access where it might not be otherwise. While the problems each country face might differ the solutions are innovative, often leapfrogging the stages a developed country’s healthcare might go through.

A couple technicians from Red Bird Health Tech.

The Power of the Pharmacy

In Ghana, West Africa, Andrew Quao and his team have been working on helping to lessen the burden on hospitals and clinics by getting pharmacies to do health monitoring tests.

As it stands, Quao, co-founder of Red Bird Health Tech says people could lose three hours to a full day waiting in a public hospital to be tested for tropical diseases like malaria, or to get their blood pressure, blood sugar or cholesterol checked. The company supports pharmacies in the capital Accra and further along the coast in Takoradi by offering rapid diagnostic tests, staff training and technical support,essentially turning pharmacies into mini-clinics. They can offer tests in five to ten minutes a patient might wait hours for in an overcrowded hospital.

When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing.

“When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing,” Quao says. “You need constant interface with the healthcare system in monitoring them. The hospitals are so burdened and the healthcare system is chocked. People are spending endless productive hours to just get on top of their healthcare.”

Quao and his team hope their growing service will save users time and money and lessen the burden on Ghana’s healthcare system,which he says is “punching above its weight.”

“We have systems that are set up to treat 100 people but they are having to treat 1000. It’s difficult to get some level of quality especially for the public health sector.”

They hope that by offering testing services in pharmacies, people will just go to hospital for more serious issues or treatments, rather than the health monitoring.

Solving The Drug Price Problem

Also working in the pharmacy space is Ghanaian Gregory Rockson—who created mPharma, which gives patients access to prescription drugs at an affordable price. The company has partnered with major pharmaceutical manufacturers, insurance companies, financial institutions and governments to deliver medicines directly into the hands of consumers in a handful of African markets. It connects patients, hospitals and pharmacies to cloud-based software, so doctors know where to get medicines needed.

Rockson says Africa continues to have some of the highest drug prices in the world.

“In Kenya, intermediaries’ margins account for an excessively high 50 percent of a pharma product’s final price, whereas the average in OECD countries varies between 2 to 24 percent of the final price. We built mPharma to create new business models that would enable more patients to have access to the medicines they need at an affordable price.”

“What Africa needs is more physical healthcare infrastructure and human capital.”

So far, mPharma manages a network of over 220 pharmacies and serve 40,000 patients each month and patients pay between 20-30 percent less for their medicines in selected mPharma partner pharmacies.

While Rockson wants to see mPharma become the largest healthcare company and brand in Africa, he says there are a number of challenges within the heath tech landscape in Africa that need to be addressed.

“What Africa needs is more physical healthcare infrastructure and human capital. Once we have this, we can build technology enabled products and services to bring more efficiencies and drive down costs.”

The founders behind Yapili

Is Telemedicine The Answer To Africa’s Mental Health Epidemic?

Mobile phones are ubiquitous in Africa,with an estimated three mobile phones for every four people in sub-Saharan Africa. A report in The Lancet says the widespread of phone and internet connectivity allows for leapfrogging opportunities in Africa by adopting more advanced technologies rather than following slow, classic paths to address health workforce constraints and improve people’s access to quality health services, with innovation as key in developing new services, ways of working and creating technologies to achieve improved health, including training healthcare workers though online courses.

It is through mobile phones that Yapili hopes to link users through the continent with healthcare professionals, near and far without having to step foot in a clinic or hospital.

Co-founder Enya Seguin and market lead Rorisang Mokgwathise are part of a team spread over seven countries working on the service that delivers healthcare and advice to those in eight African countries through an app. Users can connect to local and western health professionals in societies where professional health advice is hard and expensive to get. YAPILI connects users to professionals who can answer questions around pregnancy and family planning, diabetes and hypertension, HIV and sexual health, mental health as well as generic health questions.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on [that].”

Users upload their information into the app, creating a profile and then the reason why they want to speak to a healthcare professional. The app then suggests professionals the user can speak to, trying to match someone in the same country if possible.

The idea was born in Rwanda in 2014 and is now available to more than 1200 users in Kenya, Botswana, Nigeria, Tanzania, Uganda, Rwanda and South Africa, all are English speaking and have relatively high connectivity. Seguin says the most popular services so far are around pre and postnatal advice, as well as mental health.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on it (mental health) because we realized its becoming an epidemic in a lot of African countries,” Mokgwathise said from her base in Botswana.

Closing Down Africa’s Equipment Graveyards

Professor Tania Douglas, a biomedical engineer in South Africa has been researching and speaking about the need for health innovations to be homegrown to fit the local context they are in. Leapfrogging is important for health innovation in Africa, but so is completely new ideas.

“Learning from the solutions that have already been developed elsewhere and adapting them to local needs (i.e. leapfrogging) is a potential shortcut to health innovation. But devising novel solutions to local problems that haven’t yet been addressed elsewhere is also important.”

In 2017 she delivered a TED Talk highlighting an “equipment graveyard” of imported medical equipment from hospitals in Africa which turn out to be unsuitable for local conditions, staff not adequately trained to use or maintain them, or they might not work in the humid and hot environments,or need constant and reliable supply of electricity often lacking across Africa.

In her talk Douglas points to an ultrasound monitor to track the heart rate of unborn babies in the equipment graveyard. These machines are standard in developed countries but developing -not so much. But expensive equipment is not needed for this, and there are plenty of locally-developed solutions that utilise simple technology proving this, integrating engineering with healthcare. The focus needs to be on creating more useful medical devices to help Africans, creating more inventors who know the issues and have homegrown solutions that work for the varied contexts across the diverse continent.

A customer using a Deaftronics hearing aid.

The Future Of Healthcare Tech in Africa

One of the companies Douglas highlighted in her TED Talk was Deaftonics, established in 2015, the company manufactures affordable solar powered hearing aids, made by hearing impaired people for people with a hearing loss.

Founder Tendekayi Katsiga focused on hearing impaired people in developing countries because he found a significant number of lithium battery hearing aids provided by NGO’s and governments to Africans die in their first month. Katsiga developed his solar-powered hearing aid in Botswana and currently is focused on getting them into the ears of children “presenting them with an opportunity to go to school.”

So far, Deaftronics has sold more than 10, 000 units of solar chargers in 40 sub-Saharan countries.

He’s excited about the future of healthcare tech in Africa, believing it will help eradicate diseases and improve overall health outcomes.

“The health tech landscape presents huge opportunities for Africans. It paves ways to make improvements in distribution of medicines using drones in areas which are not accessible. The rapid growth in access to technology, particularly mobile phones and network connectivity in Africa , has created opportunities for health programs, training and data management.”

Disability

The Deaf Tanzanian Porters Defying Kilimanjaro Sized Odds

They told them deaf people couldn't be porters, but Augustino Vasco Namtuo and Ernest Joseph Antoni proved everyone wrong.

Every month, thousands of climbers trek across dense forests, dusty deserts, and a sandy maze of switchback trails to check off one bucket-list life goal: summiting Mount Kilimanjaro. The high-altitude summit is challenging—climbers risk pulmonary and cerebral edemas, not to mention injuries. Those who successfully reach the 19,341-foot Uhuru Peak leave with a permanent sense of pride.

But for porters, Mount Kilimanjaro is about more than pride, and it’s more than a bucket-list checkmark. Africa’s tallest mountain is lifeblood for local porters across northeast Tanzania. And for Augustino Vasco Namtuo and Ernest Joseph Antoni—among the first hearing-impaired Tanzanians to work as porters—Mount Kilimanjaro offers the rare chance to overcome societal setbacks.

Augustino Vasco Namtuo is one of the first hearing impaired porters to climb Kilimanjaro.

The young men, both 23, grew up bonded over their similar disabilities: Namtuo is deaf and Antoni is partially deaf. They attended primary school together in Arusha. While most of their classmates went on to secondary school and advanced-level education, these two were left behind. Few hearing-impaired children make it past the seven years of primary school—Tanzanian teachers rarely know sign language—and private special-needs secondary schools come with high price tags. That’s why, following graduation in 2014, their teacher recommended a carpentry skills workshop designed to help hearing impaired youth. Their parents couldn’t afford proper secondary education; this was their best career option.

But halfway through building a set of desks, Namtuo and Antoni noticed their career aspirations shifting. The carpentry workshop founder and teacher, Godwin Temba, mentioned his mountain climbing career. The awestruck boys took notice. Temba is the owner of Kilimanjaro outfitter Amani Afrika; he has successfully summited Africa’s tallest mountain over 200 times, and one time climbed up and down Kilimanjaro in 24 hours.

Ernest Joseph Antoni is another porter who is hard of hearing.

In his spare time, Temba runs workshops to help deaf youth learn hirable skills such as carpentry, but he never considered adding “porter training” to the mix. Then again, he’d never met Namtuo and Antoni.

“I noticed their interest in climbing, so after class, I asked them if they wanted to go on the mountain as porters,” Temba said. “Everyone thought I was crazy. I heard ‘what if’ after ‘what if,’ but I told myself if they have the energy and passion to do it, then they can do it.”

“Everyone thought I was crazy. I heard ‘what if’ after ‘what if,’ but I told myself if they have the energy and passion to do it, then they can do it.”

While Namtuo and Antoni were giddy about the possibility of working as porters—they wanted lives filled with adventure versus carpentry—the same couldn’t be said for their skeptical parents. Climbing Mount Kilimanjaro is tough for anyone, let alone someone missing a key sense.

In the end, passion trumped practicality; the boys wouldn’t take no for an answer. “Augustino and Ernest have always been strong willed,” said Vivian Temba, director of sales and marketing for Amani Afrika. “They insisted they should at least be given a chance.”

In 2015, the boys joined Amani Afrika for their first ascent as porters. [Godwin] Temba joined the climb to guarantee Namtuo and Antoni weren’t overextended. His protective approach didn’t last long.

Mount Kilimanjaro in all its glory.

“I felt like I had to go to make sure they were safe, but those boys didn’t need me,” he said. “I tried to cut the luggage they were carrying up the mountain—instead of 20 kilograms, they were given 10—but the boys protested. They wanted to carry the same as the other porters.”

After just one climb, Temba knew the boys were born to be porters. They had positive attitudes, physical strength, and the ability to creatively communicate with fellow porters and guests.

“These two paid attention to what other porters did and they’d replicate it,” Temba said. “Just because they’re missing their sense of hearing doesn’t mean everything else isn’t working. They put in twice the effort, and their work paid off.”

“Just because they’re missing their sense of hearing doesn’t mean everything else isn’t working. They put in twice the effort, and their work paid off.”

Their hard work reaped rewards not only on the vocational front, but also in terms of their employer. For decades, Kilimanjaro porters have suffered terrible work conditions; when Temba first started as a porter, he was forced to sleep in caves and carry double the recommended weight. When he started Amani Afrika, he vowed to be part of the porter equality movement. He pays porters fairly, guarantees proper nutrition, and has guides check baggage weight before each day’s climb.

Fair pay and safe working conditions have porters vying for the chance to work with Amani. Fortunately, Namtuo and Antoni solidified their place on Amani’s team from day one. In fact, they’re two of the company’s most sought-after porters.

Augustino and Ernest, having fun before an ascent.

“The guides compete to have these two in their climbing groups,” Temba said. “They work hard but know how to have fun. When everyone’s singing and dancing, you’ll see them jumping and clapping along. They can’t hear the music, but that doesn’t stop them.”

When Namtuo and Antoni first climbed Kilimanjaro, Temba knew they’d face challenges. How would they hear the guide’s instructions? What if they couldn’t voice their problems? How would they communicate with clients? What he didn’t realize was that, as Namtuo and Antoni overcame their own personal mountains, they inspired everyone around them to do the same.

“When people watch these boys, they know they can pursue anything.”

“When people watch these boys, they know they can pursue anything,” Temba said. “They’re a constant source of encouragement. When clients and other porters see Augustino and Ernest climbing, they think to themselves, ‘if they can do it, so can I.’”

Disability 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 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 Rare Diseases Vision & Hearing Loss

A Viral Campaign To Bring Disability To The Toy Aisle

Toy Like Me is putting pressure on the big brands to make their toys as diverse as kids are.

Watching television one day as a child, Rebecca Atkinson saw something that made her sit up straight with excitement. Like many British children, she loved the television show Blue Peter and watched it religiously. But today, she noticed something different on her favorite show: one of the presenters had a hearing aid, just like hers.

“I excitedly called my mum in to tell her that there was somebody like me on TV. I thought, if she’s got a hearing aid, I can be like her when I grow up, because kids want to be on TV like their idols.”

Rebecca’s excitement was dashed when her mum explained it wasn’t a hearing aid, but a radio piece in the presenter’s ear. It was disappointing, but not surprising. Because it wasn’t just television, it was everywhere: there just weren’t children like her. It wasn’t until adulthood that she was able to put the sense of isolation she felt into words, and realize that she’d been looking to see herself reflected back by the wider world.

“Those memories were me looking for some kind of recognition of my experience in the world around me, and it just wasn’t there.”

Rebecca Atkinson, who has Usher’s Syndrome, started Toy Like Me to bring diversity to the toy aisle

Later, a career in journalism and children’s television further confirmed Rebecca’s conviction that disability was missing from the mainstream. But it wasn’t until around two years ago, when her children were small and she was knee deep in toys, that she had a “lightbulb moment”, realizing disability was missing from the toybox, too.

Along with a couple of friends, Rebecca got to work. She created the Toy Like Me Facebook page and posted pictures of a Tinkerbell doll with a cochlear implant she’d fashioned with modeling clay. The pictures went viral, and the group gained thousands of members overnight. When Rebecca’s online petition asking for toy representation was signed by 50,000 people, manufacturers noticed. Playmobil announced plans for a set of figures with disabilities. The Irish-made Lottie brand got on board, pledging to make a doll with a cochlear implant like Rebecca’s homemade Tinkerbell, and a few months later, Lego released a wheelchair-using figure, attributing it to the #ToyLikeMe campaign.

Two years later, Rebecca’s still waiting for Playmobil. “I’m at that stage where I’m ready to start shouting about that,” she says. However, Lottie’s Mia doll has hit the stores, and Rebecca says the wildlife photographer doll–who just happens to have a cochlear implant–might be her dream doll.

“I love her, I’m very proud of her. If I’d have been given a doll like that, I would’ve been very happy.”

Although she had a lot of friends growing up, Rebecca was self-conscious about being deaf. At school she wore her hair down to hide her hearing aids. She fantasized about a deaf classmate joining her school, so she wouldn’t be the only one.

When she was seventeen, Rebecca was diagnosed with Usher’s Syndrome, a genetic disorder that had caused her deafness. The condition also causes retinitis pigmentosa, and Rebecca was told she’d lose her vision. “It was quite a big blow,” she says. She left school: she had better things to do. She went on to study film and TV, and then moved to London to work at the BBC.

The Irish toy maker Lottie created Mia, a doll who has a Cochlear implant.

Eleven years ago, her sight worsened.

“I was living in central London, and it was very busy. I didn’t have a guide dog or a cane because I was in denial. I didn’t want to look blind.” She left her job to freelance, eventually moving to Norwich on the east coast to bring up her children, who are now nine and seven. Her vision has narrowed to a tunnel, and she gets around with help from her guide dog, Ruby.

Now, she works full time on her campaign. Looking for other ways to get her message out there, Rebecca’s exploring the possibility of a television show, working directly with children, and a longitudinal study with Goldsmiths, University of London.

Dr. Siân Jones, a research fellow at Goldsmiths, is hoping to lead the study. Siân carries out studies with Playmobil figures, harnessing children’s imagined play to measure their attitudes to ethnicity and disability after they’ve played with a figure with an unfamiliar identity.

With a group of 600 children, Siân measured the effect of playing with toys with different disabilities. She discovered that after three minutes of play, children spoke about disability in a more positive way, and displayed less anxiety about interacting with people with disabilities.

Siân, who has cerebral palsy, discovered when she worked directly with the children: the positive effects were increased. “It was an added kind of booster effect on top, it was an unexpected finding from that but it was nonetheless a good one.”

Siân is hoping to begin work on a year-long study examining children’s attitudes when disabled toys are left in their classrooms.

After twenty minutes of playing with a toy, children have been shown to find disability less scary when they encounter it in the real world.

“At the moment, we’re waving goodbye to the children after about 20 minutes of testing, with no idea how long these effects last. The longitudinal study will allow us to put toys in the classroom which is much more realistic, and to test over the course of the year to see whether there’s any change in attitude.”

Growing up, Siân says she was resigned to the fact she wasn’t represented. “I just didn’t expect to see any [representation]. My contact with other children with disabilities was very, very low as a child and so there was some isolation around that.”

Seeing toys that reflect themselves is important for children’s identity, Siân says. “If the toys represent [children with disabilities] it shows that they matter as a part of society. The toys act as role models: Barbie science dolls and the Lego scientists dolls show girls that they can be in that role, but disabled toys are missing. That presents quite a powerful message about the position of children and adults with disabilities in society: they’re just not there, and they can’t do these things.”

Siân believes disability is the “poor cousin” of ethnicity. “In most toy sets now you will see the male and the female represented in different ways, and there’s multiple ethnic characters, but disability is still not very well represented in the toy box.”

Siân adds that it’s important for every child, disabled or not, to see representation. “It’s important for children to have exposure to disabilities. It teaches important skills about empathy and seeing the world from somebody else’s perspective.”

“It’s important for children to have exposure to disabilities. It teaches important skills about empathy and seeing the world from somebody else’s perspective.”

Toys can help children work out the similarities between them and other children with disabilities, and through her research, Siân’s discovered the importance of helping children explore disability on their own terms.

She remembers one child playing with a legless Playmobil figure. “He played about thirty seconds of football before realizing that it wasn’t going to happen, at least, not in the way he was doing it. That just gave him a safe space to think about the rules of that game, and how he could play football with a child with no legs in a wheelchair.”

It’s important for kids to have toys to play with that are as diverse as they are.

Siân and Rebecca both mention the strength of imagination, the complex worlds and fantasies children create for their toys to inhabit. Toy manufacturers are well aware of this, creating mainstream toys with magical powers and fantasy features. But when it comes to disability, they fall back on stereotypes and everyday reality: Playmobil’s existing wheelchair-using characters are a child in a wheelchair or an elderly man. Lego’s wheelchair figure is a boy in a grey chair.

“That doesn’t speak anything to the child that is disabled,” Rebecca says. “With characters that don’t have a disability, we don’t have a problem saying, that character can be anything. But when it comes to disability we put restrictions that character. People will say, we can’t make a wheelchair fly, because in real life wheelchairs can’t fly, and we might offend somebody.”

Rebecca would like to see toy brands share responsibility for representation. “I would like to see a better peppering across the whole market: Lottie have the hearing aid doll, Barbie could bring out a wheelchair doll, let’s say Playmobil have a guide dog. Saying these things should be visible around the toy industry doesn’t mean one brand has to do it all.”

The Legos, Mattels and Playmobils of the world wield enormous influence, she says. “If a big brand recognises you, that is powerful. When big brands do inclusive things they send out a message that’s more powerful than they realize.”

“When big brands do inclusive things they send out a message that’s more powerful than they realize.”

“Toy Like Me is the first time where somebody has stood up and told these big brands that they have a moral responsibility to represent diversity to children, and to include disabled children in their products. [Big brands] hold the power to promote massive social change, and it’s time we saw that happen.”

Disability Vision & Hearing Loss

Lullabies for Lexi

When Lexi Vernon was born, she couldn't hear the songs her mother sang her. Now, along with the power of music, her story is helping fight hearing impairment across the country.

In Jaime Vernon’s mind, motherhood is linked with music.

Many years ago, her own mother used to blast oldies and gospel music as she waxed the linoleum floor in their house in rural Ohio. Cornstalks surrounded their home. Neighbors down the road owned a chicken farm. Vernon and her mom, who sang in the church choir, slipped on socks and sang along as they slid and danced across their kitchen. “It’s one of my best memories,” Vernon says. “Music was always in our home.”

Lexi Vernon, having her cochlear implants activated for the firsttime.

Years later, Vernon was living in Nashville when she brought her newborn daughter Lexi home from the hospital: it was a year after her own mother had died of breast cancer, and Vernon was eager to sing her baby daughter the tunes and lullabies that had once been sung to her, and instilled in her a love of music. Each night in the nursery, Vernon sang to Lexi, but the baby cried incessantly, writhing on her shoulder. When Vernon tried to rock her to sleep, Lexi protested even more.

“I thought we just weren’t connecting,” she remembers. “Never in a million years did I think I had a deaf child.”

Vernon didn’t learn Lexi was profoundly deaf until after her first birthday. Six months before her second birthday, Lexi had cochlear implants in both ears. Experts say children implanted before age two have a good chance of hearing—and speaking—like other children. Lexi, now 9, speaks and talks. But she almost fell through the cracks.

Vernon wanted to make sure other parents and kids didn’t find themselves in the same situation. So, six years ago, she started the non-profit Songs for Sound.

Vernon began by recruiting top Nashville songwriters like Neil Thrasher, Wendell Mobley, Jason Sellers, and Jay Clementi to travel with her across the country to tell the intimate story behind their songs. These events ultimately raised over $200,000 for underfunded hearing programs. Now, her mobile health outreach program has provided over 12,500 free hearing screenings to children, seniors and veterans. She also runs a free weekend camp in Kentucky for deaf children and their families. Her brother-in-law, Rascal Flatt’s lead singer Gary LeVox, has helped with the non-profit, performing for veterans.

“I felt disconnected from Lexi for a long time,” Vernon says. “Then, after her implants, at about 21 months, I was rocking her and waiting for her head to go on my shoulder. It did, and time stopped. I knew then that I needed to do something to help others.”

Vernon is vocal about Lexi’s story. She shares it with parents and educators across the country, but also with doctors. That’s where Vernon’s story started: in the doctor’s office.

Songs for Sound travels the country, raising money and awareness around hearing issues by telling the stories behind the music.

At a routine 10-week check-up, Lexi’s pediatrician noticed from her chart she never had the standard hearing test all babies get at birth. Vernon remembered they skipped Lexi that day; they were busy. In his office, the pediatrician couldn’t get the test device into Lexi’s tiny ear canal. He told Vernon not to worry, they’d do it when she was closer to a year old.

At 10 months, Lexi wasn’t responding to doors slamming or dogs barking. One day, Vernon’s husband, Kevin, brought her into Lexi’s room. Lexi had her back to them; she was looking out the window. “Kevin said, ‘watch,’ and he clapped his hands, hard. Lexi didn’t move.” She also wasn’t trying to mimic speech. The pediatrician said it was normal, Vernon says, that some kids don’t talk until 18 months. But Vernon knew something was wrong. She pushed for a referral, and got one.

In the audiologist’s office, she expected to hear Lexi had a fluid build-up in her ears. “I thought it was something that was fixable,” she says. “The moment I found out she was deaf, that was five seconds of complete darkness for me.”

One of Vernon’s biggest messages for parents: when it comes to your children’s’ health, follow up until you get an answer you’re satisfied with. Without trusting her gut, she says, Lexi may not have been diagnosed until it was too late to achieve near-normal hearing with implants. “There’s nothing more reliable than a parents’ intuition,” Vernon says. “You’re your kids’ only advocate in this world.”

Since she started the mobile clinic two years ago, Vernon has tested over 24,000 ears in 25 states. Her goal is to expand to all 50 states. She connects those who need hearing help with a local audiologist, and follows up to make sure they get the care they need. She’s also hoping to start a new project that would bring awareness to doctor’s offices, YMCAs and schools.

Lexi Vernon today.

It was a Friday when doctors turned on the implant in Lexi’s right ear, a month after her surgery. The following Monday in the audiologist’s office, they turned on the left implant. “Lexi sat back in her chair, took really deep breaths, and just took in sounds,” Vernon says.

Later, at home, Vernon turned on the radio. She sang. She cried. “Lexi loved the music immediately,” she says. A month later, Lexi said her first words. “It was ‘mum, mum mum,’ meaning mom,” Vernon says. “At 20 months of age, finally.”

Soon, Lexi identified Baby by Justin Bieber as her favorite song. She learned every word, and it wasn’t long after that she was walking around the house belting it out for all to hear.

“Our lives are soundtracks,” Vernon says. “I remember the song I warmed up to during high school volleyball, my wedding song. Music inspires, it’s a gift. Lexi almost missed out on that.”

Disability Vision & Hearing Loss

What It’s Like Going Deaf In Your Thirties

Morgan Martins was thirty-five before being diagnosed with Meniere's Disease. Getting through the transition took as much love as it did strength.

Morgan Martins is one of those people who are always in motion. The extroverted 45-year-old has performed stand up comedy in their native Portugal, swum the English channel in a relay team, worked as a DJ, caught the perfect wave as a surfer and is now developing a website to support the LGBT community.

Morgan met Maria during their stand-up comedy days. After a stint as friends, the couple fell in love, and Morgan convinced Maria to follow them to London. The two have been together for eight years, and married for four.

Morgan (left), Maria, and faithful pooch.

Seven years ago, Morgan lost their hearing after contracting Meniere’s disease, a rare disorder affecting the inner ear. Forced to adapt almost overnight, they spent two years coming to terms with their new deafness until they received a cochlear implant in their right ear. The implant works by stimulating the auditory nerve. It’s not exactly restored hearing, but it allows Morgan to perceive sounds.

The last few years have tested Morgan’s character, resolve, and relationship. The digital professional, who is about to join the team at London’s Institute of Physics, says while they couldn’t have gone through the ordeal without Maria’s support, only others in the same boat can understand what it’s like to lose your hearing as an adult.

Folks caught up with Morgan to ask them more about what it’s like to go suddenly deaf, what people don’t understand about hearing loss, how hard it is to read lips if someone has a moustache, and how to keep a relationship going through sudden illness.

Tell us how things started. How did you find out you had Meniere’s Disease?

The first thing that happened was the vertigo, on the night of my birthday, in 2006. At dawn we were coming out of a disco, and I felt so dizzy. The next day I still felt dizzy, like a drunk feeling.

That summer I was going out surfing and I started having incidents. It’s normal to fall off your board but it’s not normal to not find your way to the surface. After the third accident I thought it wasn’t worth it, and I stopped. The doctors called the sudden vertigo drop attacks: you start spinning and that’s it, you end up on the floor at the supermarket. I also started suffering from tinnitus. My ENT diagnosed me with Meniere’s Disease.

In August 2009, I lost hearing in my right ear. I thought, OK, I still have one good ear, then in November, 2010, I woke up completely deaf. I had hearing aids, the first lasted three months, the second four months, but eventually they stopped working.

After the hearing loss, how did you communicate with people around you?

I communicated with a white board. I was annoyed I wasn’t being involved in conversations; that things were being decided without my involvement. I used to be the leader of the pack, the life of the party, the go-to person. I wasn’t that anymore. I became annoying to my family and friends, always asking, “what are you talking about, are you talking about me?”

I try to be positive, not an “ill person,” but at the same time it is important that people know what was happening. When I get tinnitus, one of the sounds is a ringing noise, which I nicknamed Janice, like Janice from Friends, because it was such an annoying sound. So I would say “Janice is hysterical today” to warn people.

How do people relate to you?

Most people don’t understand what it is to be deaf. People think deaf people can lip read, and I can lip read my wife, but lip reading is a nightmare. If I encounter Welsh speakers, Scottish, people with a moustache, people who speak like they have hot potatoes in their mouths, it’s difficult.

Lip reading is a nightmare. If I encounter Welsh speakers, Scottish, people with a moustache, people who speak like they have hot potatoes in their mouths, it’s difficult.

When we visited Hampton Court, we asked the lady if she had any transcripts of the audio guide for deaf people. She said “we have braille guides,” and we said, “yes, that’s good for a blind person, but do you have a transcript?” She said “Well… we have braille, and we have the audio tour in Spanish and Italian.” I’m still deaf in Spanish!

I always tell people I lost my hearing last year, so they know it was recent. Only a deaf adult can understand what it’s like to be a hearing adult all your life, and then suddenly lose your hearing.

Morgan says that having a strong relationship was part of what got them through the early stages of Meniere’s Disease.

How did your hearing loss affect your day-to-day life?

I’ve always been outgoing, and one of the things I liked to do is go out on my own at night, I can make conversation with everyone from the bus driver to people at clubs. That changed. If you go to a pub or disco that’s not a lot of fun. My social life changed dramatically.

Deafness affected my relationship with my mum. She’s in Portugal, and we would speak once a week on the phone. My wife took over the weekly calls and would speak on the phone for twenty minutes but relay the message in five minutes and I’d say, “is that it?” I felt like I’d lost my mum.

I was also that friend you called at 3am for help: “My girlfriend just left me,” or “something happened and I need help”. People stopped relying on me, and that was hard.

How did you cope at work after you lost your hearing?

I was in a really good position at the time, my career was starting to launch. I had to step down from a promotion as I was finding meetings stressful. Some people at work didn’t take it well, and my manager was a bully.

By the time I got my cochlear implant I decided It was time to leave the company. On my last day, I told my manager everything I thought of him, how hurtful he had been and how he had bullied me. Then the guy just started crying, and I went: “No, you’ve no right to start crying, and now I feel I want to help you, so stop it.”

I think the fact that our relationship started with a friendship meant the foundations of our relationship were strong.

How did you and Maria keep your relationship together during the difficult times?

I’m not a pessimist, but I always plan for the worst. One of the things I found during my research into Meniere’s Disease and hearing loss, was that there was a high possibility of me becoming completely deaf. And that was the time, I sat Maria down and said, we need to prepare ourselves. We learned British Sign Language, and she was much better than I was, she was always correcting me and teaching me.

It’s about love, but a lot about friendship and companionship. I think the fact that our relationship started with a friendship meant the foundations of our relationship were strong.

“There were dark periods, when you feel you’ve hit rock bottom. It’s a lot better after the implant.”

What was it like to receive the Cochlear implant?

I went into it with low expectations. After it’s inserted, you wait a month to switch it on. The first thing I heard was beeping, and then I was able to understand the audiologist and my wife. I just burst into tears.

It’s not perfect. I can’t enjoy music because I don’t hear frequencies and pitch the same way. I really miss music. I remember being two years old jumping on my mum’s couch, dancing to music. I learned my first English words from Queen and David Bowie. My first job was as a radio presenter, music was my first love. I do not know what Adele sounds like. I see a poster for Florence and the Machine’s album and I go [she clutches her chest], because I loved them and I’ll never hear that new album.

I really miss music. I learned my first English words from Queen and David Bowie.

How has your experience changed you?

Helen Keller said blindness makes you lose contact with things, but deafness makes you lose contact with people. I’m a people person, and what hurt me the most was that I wasn’t able to connect with people. It was hard to keep positive, there were dark periods, when you feel you’ve hit rock bottom. It’s a lot better after the implant, now I can communicate, but it was a big change from being an open, cheerful person to someone very closed.

I’ve had to make changes – and the way to change was I needed to do new things. I have a short attention span, I always need to be doing something, or I become this annoying person. But I’m getting there.

Morgan volunteers as a HearPeers mentor, helping others affected by hearing loss and considering an implant. If you are affected by hearing loss and want to learn more about Morgan’s journey and the HearPeers Mentor Programme visit www.hearpeers.uk.

Disability 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 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 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.