Posts

Profiles

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.”

The Good Fight

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.”

Q&As

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.

Profiles

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.”

The Good Fight

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.

 

The Good Fight

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

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.”

 

The Good Fight

The Deaf Politician Who Listens To Everyone

Mojo Mathers says one of the hardest things about her job as a Member of Parliament is learning to “accept the bouquets, and discard the brickbats.”

Mathers, who made history when she was elected in 2011, is New Zealand’s first deaf member of parliament, and only the fifth in the world. But she never intended to become a politician.

“I always thought I’d be a scientist!” she says. “Until I got into parliament I didn’t have a television, and only rarely bought a newspaper. I was very focussed on being a mother to three small children. I could have named the prime minister, but that was about it.”

mojocreditkirkhargreavesandfairfaxnz

Mojo Mathews. Photo: Kirk Hargreaves

Mojo’s deafness was caused at birth, but it wasn’t discovered until she was two and a half. Her mother worked hard to prepare her for school, and she learned reading and lipreading early on. She now has an Honors Degree in Mathematics and a Masters in Conservation Forestry.

Mojo lives in a remote area of New Zealand’s South Island, which means a lot of travel back and forth to parliament in the capital city. Her role as the Green Party’s spokesperson for Disability Issues, Conservation, and Animal Welfare gives her the opportunity to pursue many issues close to her heart.

“Disabled people are the single most disadvantaged minority in New Zealand, according to the Human Rights Commission,” she says. “As a deaf person who lives and breathes green issues, I am a strong advocate for inclusion for everyone.”

Disabled people are the single most disadvantaged minority in New Zealand.

Over 8.5% of New Zealand’s population is deaf or hearing impaired. According to the World Health Organization, 360 million people worldwide have disabling hearing loss, a number that’s on the rise. But many jobs aren’t open to catering to people with disabilities –including Mojo’s own.

When she began her political career, Mojo says had “no concept of the challenges that lay ahead for me as a deaf candidate and activist.” For the first few months, she suffered heavily from concentration fatigue as she tried to keep up with the fast-moving debates that happen in and out of parliament.

Mojo is proficient in lipreading and is learning sign language, but this wasn’t enough. Her very first battle as an MP was to get the technology she needed to do her job.

“I needed a laptop or screen directly at my desk, and a sign language interpreter. New Zealand Sign Language is one of our three official languages, along with English and Māori, but it wasn’t represented in parliament.”

People with disabilities have a 59% unemployment rate in New Zealand, and while the majority may need no extra assistance with workplace modifications or support, about 19% do.

Mojo’s battle was closely followed by the public, who put pressure on the government to give her the tools she needed. Eventually, she was provided with an electronic note-keeping assistant, but the time it took for this to happen remains controversial.

mojowithhearingdogsaotearoaatparliament

Mojo and some special constituents.

As an activist, controversy isn’t something that stops Mojo. She engages frequently with the public on social media, and shares a lot of her personal life as well as what she’s doing at work.

“One of the tough things about my job has been learning to accept the bouquets and discard the brickbats,” she said on Facebook. “Today I got told by a lovely older woman that my maiden speech had made her cry and it was a “must watch.” A few hours later I got told by a male that my voice was ‘too flat’ and I needed to get more emotion into it without being ‘creepy intense.’ I’ll just take the first, thank you.”

Mojo and her partner Don are busy transforming their new home in Peel Forest, a small community in the Canterbury region of New Zealand. It’s a hefty job, requiring the renovation of nearly two hectares of land. The area is filled with native birds, trees, and other wildlife, all of which Mojo is passionate about protecting.

“When a local farmer heard we’d cut down 17 trees he very earnestly informed me I needed to plant 10 trees for each one felled. So today we planted our first tree, a heritage apple gifted by a friend. One in, a hundred and sixty nine to go!!”

It was this commitment to the environment that led Mojo into politics. Sixteen years ago, she moved with her family from Christchurch City to the small village of Coalgate, not far from Peel Forest.

“The location was ideal for us,” she says. “It was close to a small country school, with the peaceful Waikirikiri river flowing past our doorstep.”

But Mojo soon discovered that there were plans to build a massive water storage dam for irrigation, just upstream from her new home. She became spokeswoman for the community’s opposition to the plan, and helped found the Protection Society which stopped the dam from being built.

“It was the desire to save the Waikirikiri which led directly to my involvement in politics.”

mojowithsontimanddogkea

Mojo with her son, Tim.

Now, Mojo’s role as an MP doesn’t leave much time for local activism, but it does give her an avenue to work in the areas she cares for.

“Being an MP means media calls, caucus meetings, campaign planning, question time, select committees, house duty, speaking on bills I am leading, answering correspondence, writing blogs, posting on social media, researching my portfolio areas and so on. But one other important thing I do is provide advice to and support the work of individuals and groups who are lobbying for change in my portfolio areas.”

During this year’s International Week of the Deaf, Mojo was visited at Parliament by some special friends from Hearing Dogs for Deaf People Aotearoa.  She says that while she doesn’t have a service dog herself, she knows just how important they are for many people with disabilities.

“These dogs are highly trained and play an immensely important role in the lives of many people,” she says. “Guide dogs for blind, hearing dogs for deaf, and service dogs for children with autism are just some of the diverse roles they can take on. I have a friend who uses a wheelchair who has a service dog who picks up and bring her items, opens fridge doors and other stuff.  Unfortunately only guide dogs are explicitly recognized in the Human Rights Act , which has caused some problems for some people. I have a member’s bill in the ballot to expand this to cover other disability assist dogs.”

Mojo’s own dog, Kea, was adopted from the Society for the Prevention of Cruelty to Animals earlier this year, and is an important member of the family.

“She’s won the heart of all our extended family with her gentle and friendly ways. Kea is easily one of most intelligent, gentle and affectionate dogs I have ever had. She loves participating in everything we do. The only difficulty we have is that she has serious separation anxiety issues, possibly as a result of being left at the shelter for two months,  which makes it very hard to leave her at home alone!”

Another area of accessibility Mojo champions is the provision of captioning for television.

“Many countries have mandatory requirements for TV to be captioned, but New Zealand falls way behind. In the US and the UK, 99% of programs have optional captioning. We only have about 25%. It’s not fair to lock out people who are deaf from information on television.”

The issue came to a head this year when the National Foundation for the Deaf ran a fundraising drive to ensure the Olympics was captioned. Mojo says it shouldn’t have been left up to them.

“Deaf and hard-of-hearing people should not have to be fighting for something as essential as captioning in this day and age.”

When Mojo is at home ––which is as often as possible–she grabs Kea and heads out to the garden.

“My children and family are hugely important to me. My two eldest daughters are at university, and my son is still at high school. I highly value any time I can get with them. I love just pottering around at home with Don and Kea. We are about to get some goats… which I am hugely looking forward to!”

Q&As

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.