The Good Fight

License To Drive

For babies with mobility issues, the cool ride-on cars provided by Go Baby Go! are even better than motorized wheelchairs.

City YearWhen Kelly David’s two-year-old son Colin waves and zips around the front yard in his little red ride-on car, onlookers don’t see a toddler with visual or mobility impairments. They just see a regular kid exploring his surroundings and enjoying the Florida sunshine.

“Nobody outside of our circle really knows that [the car is] a form of mobility for him,” David says. “It doesn’t look like medical equipment. It doesn’t draw attention to itself.” David is referring to the car that was modified for Colin through a program at the University of Central Florida (UCF) called Go Baby Go!.

Colin has visual impairments caused by albinism and mobility issues caused by a rare genetic disorder called Angelman Syndrome. Colin’s speech language pathologist at UCF suggested that he might benefit from a modified ride-on car and referred him to Dr. Jennifer Tucker in UCF’s physical therapy department.

David has observed that, since Colin got his car this past spring, it seems to have broadened his worldview. “I think he’s realized there’s more to the world than what’s in his bubble, what was previously in his visual field,” she says. “We’ve seen him figure out how to map around the house now. It’s really instigating and encouraging that exploration by giving him a tool to do that.”

Researcher Sam Logan and a team of volunteers modifying an off-the-shelf ride-on car to be safe for kids with mobility issues.

A motorized wheelchair can cost tens of thousands of dollars since it’s a medical device, but a modified ride-on car for kids costs around $200. “Motorized wheelchairs are much more robust in terms of battery life, and they can go in any direction,” says Sam Logan, an assistant professor at Oregon State University (OSU) who oversees an undergraduate student club that modifies cars. 

The motorized wheelchair industry tends to focus more on adults since kids outgrow them so quickly. The cars Go Baby Go! modifies do not replace the need for other medical devices, but they provide fun and mobility for developing kids.“It’s not a perfect one-to-one solution,” he admits–motorized wheelchairs are still better–but a ride-on car can still give a child with mobility issues the first autonomy they have.

“It’s a pretty big deal for families,” Logan says. “A lot of these kids have not had any access to moving on their own [before].”

“A lot of these kids have not had any access to moving on their own [before].”

In addition to OSU’s student club, Oregon also has a monthly community build night in Portland. “Families will come and they have some of the modification supplies, or families will bring cars,” he says. “In one evening, they’ll modify the cars and families can take them home that night.” Once a child outgrows a car, the family can pass it on to someone else or give it back to Go Baby Go! so another child can use it.

Go Baby Go! started a decade ago at the University of Delaware, and now has 75 chapters worldwide, including a nationwide partnership with BMW New Zealand.

Go Baby Go cars give some children with special needs their first taste of real mobility.

Cole Galloway, a professor of physical therapy at the University of Delaware, received a National Science Foundation Award to study brain development in babies. Galloway’s research showed that he could spur cognitive and motor skills development in toddlers before they could even crawl using an experimental robot outfitted with a joystick. The robot cost tens of thousands of dollars to make and was intended for research. However, families of children with mobility issues desperately wanted one their child could use in real life so their child could move and develop too.

“I would get phone calls from parents crying on the answering machine,” Galloway says. “They kept asking me ‘when it is going to commercialized? When is this going to be available?’ They weren’t seeing it as research, they were seeing it as a real device.” He notes that parents of a two or three year old with mobility issues don’t have the experience of chasing around their child or watching the child chase a family pet, and they often worry about school readiness.

Galloway’s mentors advised him to focus on the research and let the community impact be someone else’s work,  but Galloway couldn’t turn his back. The question of whether he could also spur their development nagged at him. A high school student working in his lab asked, “Why don’t we go to Toys ‘R’ Us … and just build stuff?” Instead of manufacturing expensive robots for research, they bought little motorized ride-on cars and modified them for kids who couldn’t, for example, push a gas pedal or who needed extra trunk support to sit upright.

“Why don’t we go to Toys ‘R’ Us … and just build stuff?”

Instead of patenting these modifications, Galloway shared them freely with the world. Chapters have sprung up in universities, Kiwanis clubs, schools and other organizations. When Fisher-Price called two-and-a-half years ago, Galloway panicked. Would they object to him using the Go Baby Go! name (a name used on many of their toys) or modifying their product?

Actually, they said they loved the concept and wanted him to do a workshop with their designers. Galloway has also conducted a workshop for Daytona 500 and has plans for a workshop with Mattel. These hands-on workshops serve as a team-building activity and also provide a tangible benefit since they’re modifying cars to be used by real kids. “They are interested in corporate giving that provides a personal context,” Galloway says.

High-fives all around.

Aside from the stories of delighted families, Galloway says his preliminary research on children with Down syndrome also supports the use of ride-on cars for therapeutic purposes. “We believe that cognition language and movement are enhanced with ride-on cars,” he says. “A child that hasn’t been moving gets the chance to decide how and when to move.”

As for the David family, Colin started waving his hand after he starting using his car, so it’s also boosted his social engagement. “That’s really the first time that we saw him purposely wave,” David says.

As Galloway says, “mobility is a human right because it affects so much of our lives.”

All photos courtesy of Oregon State University.

Profiles Uncategorized

This Pale African Beauty Is Challenging The Stigma Of Albinism

In Nairobi, where albinos are persecuted and even killed for witchcraft, a 19-year-old model with albinism competes to be Kenya Miss Universe.

There’s one thing 19-year-old Lucianah Nyawira can’t understand about Kenyan society: why her fellow citizens seem to prize white people, yet she is so stigmatized.

The beautiful young woman with albinism, who is an aspiring model in talks with a top model agency to head to Paris, has been subject to abuse for most of her life.

“I don’t get why Kenyans always like white people so much…[white people] are always given privileges, everyone wants to be associated with you, why don’t they want to be associated with me and I’m white too? That is the irony in all of this.”

With her unusual loveliness, Nyawira is a natural beauty contestant in Kenya.

But the university student, who is now in her third year, has some insight; after all it’s a question she’s been grappling with for two decades, starting when her father kicked her and her mother out of the house just after she was born.

“When I was born my mum was newly married and my dad was a tour guide, so most of the time he wasn’t home. I was born, I’m white and both of them are black and he doesn’t know about this albinism thing so my dad was like ‘You cheated on me with a white guy’, and he chased her away.”

They moved in her with her grandmother, in the rural county of Kirinyaga in central Kenya, where things scarcely improved.

“People were coming, older people and all, telling the family I’m a curse to the village and to the family. It was really tough but I really love my mum because she’s a strong woman, and my grandmother – they never listened to all of that.”

Nyawira applies her make-up in her dorms.

For the duration of her life, Nyawira has had to listen to myths of how people with albinism are a curse, referred to as ‘zeru zeru’ – which means ‘white ghost’ in Kiswahili. She is also often called ‘pesa’, a Kiswahili word for ‘money’, and threatened with kidnap to neighboring Tanzania. In East Africa, where albino body parts are used by witch doctors touting medicine produced from them as a tonic for good fortune, a complete set of body parts can fetch as much as $75,000, according to the International Federation of the Red Cross.

“People will always call me funny names. Some will even see you walking with your friend and they pull your friend aside.”

A few years ago, Nyawira’s friend was warned she was inviting a bad omen into her life.

“My friend took it in and we don’t talk anymore.

“I used to cry every day when I was young. Most of the mothers never wanted me to play with their kids.”

On the catwalk.

But Nyawira, who credits a supportive family including her two half-sisters and step-dad with much of her confidence, has let very little come between her and her dreams.

She fits in studying diplomatic relations at Nairobi University around modeling shoots and a social media campaign to raise awareness about what it means to have albinism – educating people on facts like how albinism is not contagious.

“I want to be a diplomat, I want to make it in my modeling life, I want to be a good mum, I want to start my clothing line. I have so much stuff to do.”

She is currently negotiating with eminent international modeling agency Elite, which has represented models like Naomi Campbell and Gisele Bundchen, to go to Paris in July. Nyawira says the ‘albinism’ label is a difficult one; she embraces her genetic condition, a mutation of several genes which causes a lack of pigmentation, but she says that is just one part of her.

“Of course I can’t run away from being defined by having albinism. You can define me as a person with albinism but don’t treat me any differently because I have albinism. Yes, I have albinism, but don’t favor me. Yes, I have albinism, but don’t discriminate against me.”

Nyawira prepares with fellow contestants of Kenya’s first albino beauty pageant.

Though she concedes it has not been easy to forge ahead in the notoriously brutal world of high fashion, where appearances triumph above all else – even before issues of culture, race and health come into play.

“Most of the times when it’s African attire, the designer is like yes Lucianah you’re good, you have a beautiful body and you can do well but this is an African outfit, people will say we are not embracing the African heritage. People will say ‘Why are you giving the white people our African clothes?’.”

Nyawira was told by judges to leave one model casting call, while another time there was a critical public response to one of her photo shoots, which now number more than 20 across five different Kenyan publications.

“People were saying: ‘Why are you dressing a white girl in African attire? That is still colonisation. I really felt bad. Sometimes I just feel like maybe I should just finish college and go out country to the US, maybe this is where I can feel comfortable. But then I’m like ‘No, this is my country’ but it’s a very big population, how do I explain to people I’m not white? How do I convince African designers I can do African whatever?”

How do I explain to people I’m not white? How do I convince African designers I can do African whatever?

Apart from the limitations she encounters from other people, however, Nyawira says she faces few others due to her condition. Like others with albinism she has to be vigilant about wearing sunscreen and her vision is poor; she wears glasses much of the time and must sit in the front of her lecture theaters. But it poses no real interference with her modeling, apart from needing the intensity of the camera flash dialed down.

And she is hopeful that things will improve for those with albinism in East Africa. Nyawira says about half the time people accept she has albinism while the rest of the time people mistake her for a ‘mzungu’, the Kiswahili word for white person – but in her childhood very little was known about her condition. Kenya now has its first high court judge with albinism and a Member of Parliament with albinism, some of the trailblazers who are putting the cause of albinism on the map. Just recently, Nyawira competed in the world’s first beauty pageant for people with albinism and finished in the top 16 finalists of the Kenya Miss Universe pageant.

There is another potential social challenge Nyawira faces. While other barriers are breaking down in Kenya, women with albinism face great difficulties getting married. However, the defiant and articulate teenager doesn’t see this as a problem right now.

Women with albinism confront significant challenges in African society.

“Basically I don’t like men. In Africa, when you get married, you’re your husband’s property. The way your husband rates his house, his car, his farm, you’re among that. You’re the one to clean, cook – the role of the woman is to give birth, wash, cook and satisfy the man. I really don’t like the African thing about marriage, that is the only part I don’t like about being African.”

Never defined by convention, Nyawira still wants her own children, and has even decided on how many: three girls and one boy.

“I want to be a mother, of course. I love kids, I can be a mother even without getting married. I want to adopt a kid with albinism.”