The Good Fight

Ghana’s Purple People

In Ghana, where mental health issues are widely misunderstood, a homespun support group helps people suffering from anxiety and depression.

Ceiling fans, planes flying above her hostel and anxiety over school work used to send Sandister Tei into a state of panic and shakiness.

When she went to a local doctor in her home country Ghana to try find out why she was having strange thoughts and these physical reactions to them, she was told she had malaria–a common disease caused by mosquito bites in this West African country.

At 19, she knew this diagnosis was wrong. She knew what malaria felt like, but didn’t see the connection to her current state.

Sandister Tei was 19 when she started suffering from anxiety attacks. She was diagnosed with malaria instead.

“Being nervous and panicking about things, I didn’t think malaria could do that to me.”

So, she did her own research on Google and happened upon the word “serotonin,” telling her that what was going on was more likely to do with a chemical imbalance.

It got her thinking about how she was as a child, she often suffered  fatigue and would worry a lot. People would accuse her of being lazy, or that she kept to herself too much. Her school work suffered as did her self-esteem. Thanks to Google, she had some light thrown on her situation.

“I did more and more reading and realized this thing is not as exclusive: there are others out there,” Tei, now 30, and an online journalist for one of Ghana’s top media houses, recalls.

Journalism Leads To A Proper Diagnosis

She found ways to try and cope and deal with her mental health problems, but it affected her university life. She was studying geography at the University of Ghana when she started working towards a career in journalism, kicking it off with the student rags and local newspapers.

She then started blogging, and posting on Facebook, which lead her to wanting to work in online journalism.

“Being nervous and panicking about things, I didn’t think malaria could do that to me.”

Tei sought out opportunities to learn more about online journalism, with her eyes set on studying outside Ghana, as she did not see any courses within the country that had this focus.

In 2013, Tei landed a scholarship to do her masters in journalism at Cardiff University in Wales.

It was in Wales that she went to another doctor and was properly diagnosed with depression.

That diagnosis and the treatment turned her life around, her grades improved as did her energy levels. It got her thinking about the years she suffered in Ghana, because no one was able to tell her what was going on with her health.

“If I had someone to tell me to go to the hospital to get this drug, maybe I would not have suffered this much needlessly for like ten years. So that is when I thought I should be able to tell people about this, to help somebody. I am not going to administer drugs, but tell them you might want to go to hospital because there is medicine for your problems.”

When she came back to Ghana in 2015, she felt it was only people who knew about mental illness that would speak about it.

There wasn’t too much education available on mental health. “It wasn’t a national conversation,” she found.

This is something the experts echo. In 2016, Executive Director of the Mental Health Authority, Dr. Akwasi Osei, told local media mental health care in Ghana needed critical attention. He said  Ghana’s doctor-patient ratio in the mental health sector stands at 1:1.7 million as compared to 1:1 million in Nigeria and 1:50,000 in Kenya. He quoted a report that suggested  41 percent of the population, predominantly women, suffered from mental distress and depression.

41 percent of Ghana’s population, predominantly women, suffer from mental distress and depression.

In late 2016,  nurses from the Accra Psychiatric Hospital went on strike to highlight how dangerously underfunded the facility was. It is often in the news for not having the means to feed and medicate its patients. In the capital Accra, it is hard not to notice the number of mentally unstable people left to fend for themselves on the streets.

With this context, Tei decided to start a mental health support group in Accra.

Ghana’s Purple People

A friend organized a free space for her to hold the meetings, and she named the group Purple People – an affirmative name for an affirmative group.

“When you are depressed, anxious or when you are in a very bad mood, people say you are feeling blue. Purple has some blue in it, and the color purple is linked to royalty, well-being, affluence, goodwill. A lot of positive things. I think that even though we are ‘blue people’ we have the potential to crossover to the purple space.”

There are about a dozen members, they can meet each week, whoever feels like meeting, can do so.

Tei Sandister founded Purple People as a way to help raise awareness of mental health in Ghana.

Tei keeps contact with the members in a private Facebook group, and then has a public page to post articles on mental health and to advertise the group meetings if people want to join.

Purple People seek to listen to each other on common experiences, share and shed light on coping strategies to help each other while also encouraging members to seek professional help.

Since she advertises the group through social media and a blogger email list, she has found most of the members are professionals in Ghana, aged 27 to about 36. There are health care workers, an entrepreneur, software engineer, an environmentalist and Tei is a journalist.

While the group members are well-educated, living in Accra, eventually Tei wants to be able to target those in this country who might not have the same access to information.

“With Purple People, all of us can speak English and all of that but at a certain time I will focus more on people who can not speak English or even access Google, or don’t have the internet.”

She plans to try spread the message of her group in one of Ghana’s local dialects–Akan, through local radio stations in the future.

With the current formation of Purple People, she says, people don’t just connect in the weekly meetings. 

“There have been times people will write there [in the Facebook group] they are feeling really bad and need help – can someone get to them. I don’t want to call it a hot line, but eventually it became something like that.”

When this happens, members will rally and get the person the help they need.

Despite starting the group, Tei also uses it to learn more about her own issues.

Last year, amid work-related problems, she started developing intense anxiety.

She turned to the group for some pointers on what was going on and how she can help manage it.

“I set up a group but ended up going back to the group and asking ‘I know some of you have panic attacks already how is this thing like’?”

In Ghana, if a person seeks treatment for depression, they are likely to be taken to a hospital or a church group.

Another member of the group held a session for those who wanted to learn more about anxiety and shared coping mechanisms.

However, Tei is quick to point out that the group does not try, or seek to treat people, but instead helps them finds ways to get treatment, or deal with issues.

They support each other to go to the hospital to get professional help.

Tei explains that in Ghana, if a person seeks treatment, or someone seeks it on their behalf they are likely to be taken to a hospital, or a church group. Ghana does not have the General Practitioner (GP) system many western countries have.

In cases where someone might be aggressive, Tei notes they might be checked into a psychiatric  hospital, though depending on who is trying to help them, they might end up at a church, under the belief that prayers will fix them.

It was Google that helped her realize her racing head wasn’t malaria, and it was through the internet she brought Purple People together. And with her whole work being about being online, this extends to the little free time she has as well. Tei is involved with the Wikipedia community, where she edits Wikipedia Ghana. She is a co-founder of the Wikipedia Ghana community, and one of its representatives.

A Changing Direction

While she had to search hard to identify what was going on with her 11 years ago, Tei says there is a lot more mental health awareness and advocacy in Ghana now. Those who feel like they are lost in the dark luckily have more avenues to turn to.

Those who feel like they are lost in the dark luckily have more avenues to turn to.

“I have turned on the radio a few times and heard people talking about mental heath, and I have read a few articles here and there of people talking about depression.

“I have sat in meetings where people have come out and said ‘Hey I am depressed, have anxiety or am panicking’,” Tei says.

“I get the impression people are becoming more aware and speaking up.”

 

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.

 

The Good Fight

For The Chronically Ill, A Ringing Canyon Of Light

Something powerful happens when, from out of the abyss of the Internet, a voice like your own echoes back to you: “You are not alone.”

In the days following her husband’s cancer diagnosis, Renata Louwers went online in search of help. As far as responses to cancer go, this one was fairly banal. She didn’t go into denial, or try to escape, buying a zoo or a one-way ticket to the Great Pyramids. She double-clicked the browser icon on her laptop and typed “metastatic bladder cancer” into the winking search bar.  

Where she ended up was Inspire, a social health network with moderated discussion forums that teams up with organizations like the Bladder Cancer Advocacy Network to provide patients support for whatever condition they’re facing. With over one million members posting about conditions ranging from psoriasis to ALS, Inspire may just be the Internet’s largest health support network.

Renata’s Story

At first, Renata was intimidated by the openness of the community she had discovered. To people who didn’t grow up on the Internet, like Renata, members of close-knit digital communities can seem remarkably cavalier about sharing the most intimate details of their lives… and there’s nothing more intimate than cancer. “People seemed to overshare. It was off-putting at first,” she remembers.

Told he had as little as six months left to live, Renata’s husband, Ahmad, favored his privacy and chose to remain offline altogether as he dealt with his new diagnosis. But as Renata put her career as an auditor for the city of San Jose on hold to care for her husband, she found herself increasingly isolated by her husband’s diagnosis. She explains to me over the phone, “You can talk to your friends and family, and of course they’re supportive, but nobody really understands it.”

Renata and her husband Ahmad

Renata returned for help. In the subsequent days, she joined Inspire’s bladder cancer support network. Her reason for signing up was straightforward. “The more desperate you are, the more you’re in need, the less you care [about oversharing]. I just wanted help.”

Motivated by the powerlessness she felt trying to grapple with the reality of Ahmad’s diagnosis, she decided to make her first post.  “The first thing that brought me online was trying to figure out where we were on the spectrum. Was this really bad? Do lots of people get this diagnosis? I just had no idea. That was my first post ever.”

The Best Kind Of Echo Chamber

Renata didn’t know what to expect, but what followed surprised her. It’s something she describes as the “echo chamber” of social media, but she means that positively. In the worst echo chambers, you’re alone, and your voice bounces back at you, mocking your solitude. But at Inspire, Renata’s lonely message multiplied itself until it became a song of dozens of people, all of whom knew exactly what she was going through. Unlike the black caves of depression and solitude many people find themselves trapped in after unexpected illness strikes, there’s nothing dark about Inspire’s echo chamber. It’s a ringing canyon of light.  

Within days, Inspire’s “echo chamber” returned more than twenty responses to Renata, ranging from notes of sympathy to practical suggestions from people that had endured a similar diagnosis. 

With over one million users, Inspire’s forums provide comfort and hope to anyone.

For those whose experience of the Internet is limited to witnessing guerilla warfare in the comments of their Facebook feed, Renata’s description of a forum where people treat each other with understanding and respect seems like a polite fiction. But civility and compassion exists on the Internet–especially when the content of conversations shifts to vulnerable people making quiet requests for help.

Civility and compassion exists on the Internet… especially when the content of conversations shifts to vulnerable people making quiet requests for help.

And, as Renata learned, Inspire is one place you can find it.

“Inspire became my main source of support,” she says. “I could post something at 9:00AM with a great deal of nuance about this iteration of bladder cancer and in twenty-four hours I could have thirty replies… What I found to be incredibly helpful was hearing from other patients and families about simply navigating the landscape of this particular illness.”

Brian Loew, CEO of Inspire, founded the forum ten years ago to help patients get information about clinical trials.

Renata’s experience is what Inspire’s CEO Brian Loew had in mind when he launched the site about ten years ago.

“In the past, the voices of people with chronic conditions were ignored. People suffered in silence. Because these illnesses are not always visible to others, they are thought of as less serious or less impactful. Much of our work at Inspire has focused on making sure that this conversation can happen.”

At the very heart of this work stands a group of veritable strangers with the courage to stare at a flickering screen and admit that they’re not sure what to do next. Humility replaces pretense as users connect with others whose lives, like Renata’s, have been “upended.”

Mike’s Story

Mike Lawing, another Inspire user, tells a different story. It’s one that he sums up with a single statistic. “About 70 percent of counties in the United States don’t have an oncologist,” Mike says  with a rich drawl that tells of a life spent in the hills of western North Carolina.

At the time of his kidney cancer diagnosis in 1997, Mike was among them. He vividly recalls the experience of his doctor kneeling beside him in a crowded emergency waiting room to tell him: “Things look bad. Very bad.” Without an oncologist locally to advise him, though, Mike didn’t know exactly how bad was bad… and the Internet, still in its infancy, wasn’t much help.

When Mike Lawing was diagnosed with cancer in 1997, he was only given 5 years to live.

When Mike reflects on the earliest moments of his diagnosis, he exudes a kind of seriousness that demands that his listeners abstract themselves from the familiarity of their daily life, joining Mike in his. He tells me: “When I was first diagnosed, there was nothing out there that I knew of that I could turn to for help. I’m now on the board of directors at the Kidney Cancer Association and it was in existence back then, but as someone living in rural America with limited access to computers, I couldn’t find any of it.”

It’s easy to miss the gravity of this statement, “There was nothing out there that I knew of.” For someone recently informed that he had less than five years to live, coupling uncertainty with this lack of information seems a unique cruelty.

Patients receive their treatment and medication, but they leave wondering what was said and what it meant. Ultimately, they go on Inspire to get those questions answered.

Two decades later, Mike has outlived his initial five-year diagnosis, but has never forgotten the uncertainty of his earliest days living with cancer. That’s why Mike calls Inspire a “lifeline.”

Even for those living within close proximity to medical resources, Mike explains that Inspire offers users a critical sense of comfort and affirmation they often miss from their doctors. “You’ve got people that live in [communities] where a major hospital is located a block away, but they don’t feel comfortable going there to ask questions. The doctors don’t have time. The nurses don’t have time. Patients receive their treatment and medication, but they leave wondering what was said and what it meant. Ultimately, they go on Inspire to get those questions answered.”

The Purpose Of Providing Hope

Critics of online communities like Inspire wonder about the cost of sacrificing direct human interaction in favor of anonymous messaging. Do forums actually make people more isolated and shut off from the real world? But Mike scoffs at such criticisms, countering with a story about a man he knew who, dying, denied treatment in hospice. At the request of the man’s mother, Mike spoke with him and learned that a fear of abandoning his wife, daughters, and grandchildren was devastating him. “He was more concerned about that than his own health issues,” Mike says.

Yet the crux of this story lies in the simple fact that this conversation ever happened… and the only reason it happened was because Mike connected with this man’s mother. This is a type of connection that Inspire specializes in.

“Most people don’t have anyone to talk to, “ Mike says. “They may have family, but there is an isolation that comes with this journey. These people are terrified, but they can have that conversation online because they trust these people that are going through the same thing.”

When Renata’s husband passed in April of 2014, eleven months after his diagnosis, she returned to Inspire for hope and continued friendship. Meanwhile, with his cancer in remission, Mike still moderates the site’s kidney cancer forum. After reminding me that he was only given five years to live, Mike reasons: “I figured out a long time ago that anything that’s going on in my life can probably be used to help people around me. In fact, maybe that’s the reason I’m still around. It’s my purpose.”

This is also why Inspire is still growing, ten years after it was founded. It provides common purpose to over a million people like Mike and Renata: to give community, comfort, and hope to those who are struggling to understand the unexpected turn their lives have taken through illness. It’s a simple gesture, yet something powerful happens when, from out of the abyss of the Internet, a voice like your own echoes back to you: “You are not alone.”

Creative Commons photo of Bryce Canyon taken by Al King.

 

The Good Fight

How Fashion Is Getting Friendlier

From homegrown labels to Manhattan's top designers, more brands than ever are realizing that people with conditions want to be fashionable too.

From homegrown labels to Manhattan’s top designers, more brands than ever are realizing that people with conditions want to be fashionable too.

One day, former North Carolina State assistant football coach Don Horton came home and told his wife Maura that he could no longer button his own shirt. The coach had Parkinson’s, and that day, one of his team players had buttoned his shirt for him. Maura remembers, “It haunted me, to tell the truth.” He was leaving for a business trip the next day, and they were strategizing how he could keep buttoning his shirts away from home. “He was going through so many changes I couldn’t help with—but this, I could.”

Maura had noticed that the concept of a magnetic iPad cover could be applied outside of electronics, to make shirts easier to button. She applied washable magnets underneath his shirt buttons. Then, she expanded her sights to helping more people with arthritis and a spectrum of afflictions that make buttoning painful or difficult.

“I decided to take a huge leap of faith, and we started a company,” she said. To date, her company MagnaReady has sold more than 10,000 shirts, and they will soon appear in retail stores through a deal with PVH, which owns Tommy Hilfiger and Calvin Klein.

More brands than ever are realizing that people with chronic conditions need to feel fashionable too.

More brands than ever are realizing that people with chronic conditions want to feel fashionable too.

MagnaReady is part of a growing group of companies that give fashionable solutions to consumers with specific health needs.

Care+Wear launched two years ago, also based on a personal connection, and they dub themselves “healthwear.” The founders had seen family members and friends unhappy about the unfashionable tube socks they had to wear over their PICC lines while getting chemotherapy. Now, they sell antimicrobial covers in a variety of colors, in addition to shirts that accommodate patients with ports. Covers and shirts are now sold in Walgreens, and available to patients at a number of hospitals including the Mayo Clinic, the Cleveland Clinic, as well as hospital gift shops nationwide.

“I do think it’s a trend,” Horton says. “Sometimes, it’s still on the cheaper manufacturing side of things. There have not been any luxury brands that have tackled it. None of the large brands have fully embraced it.”

This is exactly the gap that many of these companies are hoping to bridge. Horton has noticed that clothing for patients has focused on function over aesthetics. Although that might seem superficial or unimportant, frumpy clothing comes at an emotional cost.

After being diagnosed with a disease, all that’s available are elastic waist pants?

“After being diagnosed with a disease, all that’s available are elastic waist pants?” she says, remembering her husband’s dilemmas. “That changes the way you feel about yourself if you’re not dressing like the way you want to, or you’re used to. The older population, 50 to 60, they don’t know what a casual Friday is. That generation, even if they’re retired, they wear a button-up shirt because that’s what they’re used to. If they can’t wear a button-up shirt, it affects their self esteem.”

Care+Wear's armband is fashionable and keeps PICC lines secure.

Care+Wear’s armband is fashionable and keeps PICC lines secure.

In the past, what was available on the market made patients feel limited or uncomfortable, says Chaitenya Razdan, founder of Care+Wear. Chemotherapy used to mean staying in the hospital or on the couch, but advances in technology make patients more mobile today. One of the company’s customers was worried she had to quit her collegiate running career because of her PICC line. But when she showed her doctor her PICC line cover through Care+Wear, the doctor gave her the OK to keep running. Another customer was self conscious about going to prom with her PICC line, but she found a cover that matched her prom dress.

“It’s designed to be clothing first, not to feel like: Oh my gosh, I have to put on my special chemo shirt today,” Razdan explains.

Accomplished fashion designers have directed their talents toward solving for this underserved market. Izzy Camilleri has been featured in Vogue and designed for celebrities like David Bowie and Meryl Streep before she got a special commission from a journalist who uses a wheelchair. The project was eye-opening, and Camilleri began to realize how neglected an entire population had been up until that point. The designer decided to shift her focus toward making fashionable clothes for wheelchair users and launched IZ Collection. Since then, like Horton and Razdan, Camilleri has realized how psychologically important clothing can be.

It’s designed to be clothing first, not to feel like: Oh my gosh, I have to put on my special chemo shirt today.

“This woman called me after receiving her skirt,” Camilleri says. “She just wanted to tell me …  she’s worn it every day since she’s gotten it. It made her feel human again. That’s huge. I have other people tell me it’s changed how they feel. They’re starting to care more about how they dress. It makes them feel alive.”

Sadly, a worthy mission and passionate customers aren’t always enough to keep a business afloat. Camilleri recently announced that she’s putting IZ Collection on an indefinite hiatus to regroup and figure out her market. She’s had trouble balancing overhead with the number of customers in her market. Occupational therapists have told her that their patients are slower to try new clothing. It’s also difficult for customers to buy an item online when they have very particular fitting needs and can’t try the clothing on in person. “It’s hard maintaining overhead and stock and everything when things grow slowly,” she says.

The IZ Collection.

The IZ Collection by Izzy Camilleri is as stylish as anything out there.

It’s also tricky to market to customers not necessarily united by the same interests, but simply by the same needs. “Just because you all have a spinal cord injury doesn’t mean you all want the same thing. It’s a massive undertaking to get the brand out there because everything is scattered to the wind: [People] aren’t all looking at the same disability magazine.”

“There are a lot of people out there who need what we do,” Camilleri says. “But it’s about finding that common thread that links people together.”

Still, the needs are there, and where there is a gap, there are also business opportunities. Horton has started selling her magnetic shirts in department stores such as Kohl’s and JCPenney.  

If there’s one thing Horton has learned about the fashion industry, it’s that they are slow to change. “But once they understand some of the demographic base and once they get it, they fully embrace it. It’s been a journey just to get initiative behind it. Adaptive clothing, they see it as a niche market, like: Oh, that would help two percent of buyers. But when you take it out into the marketplace, that’s when they realize it’s a necessity.”

Customers helped some big retailers understand the market demand, Horton says. “Once it was in the marketplace, people were like, ‘My gosh, my cousin, my uncle, my niece… they need that!’ We have to change it from being a niche to a necessity.”

The Good Fight

Breaking The Cone Of HIV Silence

In Kenya, a woman organizes her community to fight the stigma of AIDs.

The year was 2006. Joyce Nipher, then a 38-year-old housewife with three children, found herself an AIDS widow with an HIV positive status and negative finances.

“I thought to myself: ‘Where am I going to start? I’m not working, I have to pay house rent, I have to pay school fees for my children.’ You couldn’t recognize me at that time, I was just like this,” she says, imitating a small, hunched over woman with her head down.

The Kenyan woman’s life has been demarcated by the scourge of AIDS, though to see her now you wouldn’t know it.

joyce-5

Joyce Nipher.

Mama Brian, as she’s known in the East African manner that renames woman after their first sons, has a broad smile and an easy laugh. The cozy one-room shanty she now lives in, decorated with photos of her posing with international friends and of Brian at graduation, is a vast improvement on the slum she was living in a decade ago.

Nipher estimates 75 percent of the people she knows are living with HIV. Her uncle was the first in her family to die from the immunodeficiency syndrome in 1995, before her sister in 1999.

In 2002, she noticed she was getting sick all the time and not recovering.

“I caught malaria. When I took the drugs for malaria, it was not getting better. Then I decided to go for a test. I was tested for HIV and it was positive.”

joyce-6

75% of the people Joyce knows are living with HIV.

Nipher is not certain how she contracted HIV, as she has had blood transfusions at the hospital before. However, she knows her husband, Moses, was sleeping with other woman, unprotected.

To make matters worse, he refused to get an HIV test done even when her own status became clear.

“For my husband, he said he didn’t want to hear about HIV. If he heard he had HIV [he said] he would poison everyone in the house.”

Until her diagnosis, Nipher continued to have unprotected sex with her husband.

She says she never thought about the possibility she could contract HIV before she started getting sick. There was very little awareness about the AIDS epidemic that began in in the 1980s.

In 2005, Moses was admitted to hospital but he again refused an HIV test, instead being diagnosed with tuberculosis–a common AIDS comorbidity. The World Health Organization estimates the risk of having tuberculosis is between 26 and 31 times greater in populations with HIV.

joyce-2

 

An alcoholic, Moses continued to drink while taking his medication and eventually died of meningitis seven months later.

She was angry with her husband for his refusal to fight to survive, she says, “but then what could I do?”.

“It really hurt me. I was like, ‘When he is going to die how am I going to take care of the children? I’m not a working woman, I’m just a housewife, I don’t have any work’. I was very thin, I was sick.”

When a Canadian foundation first came into contact with Nipher in 2006, she was lying on her deathbed in the Nairobi slum of Kijiji–which means ‘village’ in Swahili. But the foundation offered her a lifeline, put her three sons in school, educated her about HIV/AIDS and even gave her money to start giving HIV awareness trainings in her area.

She began making money slowly through giving awareness trainings, supplementing this by washing clothes and cleaning houses.

In 2008, Nipher decided to start her own group, Women Against Stigma. The group began with 10 HIV-positive women from her slum, with the idea to be open about their HIV statuses in order to combat the secrecy and fear that Nipher says often accompanies the illness. Fear of stigma prevents people from seeking treatment, she says, and is the reason her own husband died.

joyce-8

“Many people were dying because of the stigma.”

“Many people were dying because of the stigma. We said ‘No, we have to come up and do something to support the people who are dying’.”

There are now 26 women in the group, although stigma is still a problem in their local communities and only ten are open about their HIV status. However, the women band together to help each other find economic power.

“We decided to start making beads, we can make smart jewelry, we can go and sell.”

The first beads were bought with funds from a German group that Nipher met through one of her HIV trainings. As the years have passed, the women have added more skills to their retinue; weaving baskets, making detergents and tie-dying clothes.

Each woman is entitled to a KSH6000 loan (USD$59), but they must pay KSH1000 back each month over the course of six months plus an interest of KSH100.

That money is pooled, interest compounds and then that money is channelled into one of the existing businesses; or, ideally, into a new business entirely.

The women are now looking to buy a house when they have enough saved up.

“It’s better to work together,” Nipher says. The women work largely from home and visit clients around where they live, but meet up once or twice a month to discuss business, among other issues.

joyce-7

HIV medication can be hard to come by in Kenya.

It is still hard to make sales at times, given the poverty in the areas in which they work, but it has given an economic pathway to women who have lost jobs or husbands or been ostracized by their families.

Nipher is a known advocate in the slum she has now left behind, thanks to the economic advantages she has gained since she began Women Against Stigma.

She is also the first person many in the slum turn to when an HIV positive result comes in.

“They used to hate me, but nowadays they love me. When someone is sick, I get a phone call [saying] ‘You’ve got to come and take her to the hospital, come and talk to so and so’.”

That’s a big change from the discrimination she used to face 10 years ago.

“When you go to someone to ask for a job, they’d say ‘She’s HIV positive, she cannot work here’. I could not even talk with people in the beginning.”

Joyce even lost a job cleaning a house in 2007, after her employee discovered her taking antiretroviral drugs, or ARVs.

“Everyone thought I was going to die and my children could not go to school, but now they are wondering,” she laughs.

Nipher also volunteers three times a week in an orphanage run by the Canadian NGO that originally helped her, the Hanne Howard Fund.

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“Women against stigma.”

A number of orphans are AIDS orphans and a handful are HIV positive. It is these orphans who Nipher has a particular interest in looking out for.

As part of her outspoken role, Nipher has sung songs and written poetry encouraging the community to combat HIV stigma. One she can still recite from memory:

“Oh let me speak, oh let me write, oh let me tell people I can remember, I can remember, I can remember. My beloved sister died, my beloved uncle died, my beloved husband died. It was because of the stigma. I am living because I am above the stigma. You people living with HIV speak out the status, you people living with HIV preach the gospel on HIV and Aids, you people living with HIV, don’t joke around with Mr Virus. Fight the stigma of discrimination with all means.”

All photos by Humphrey Odero. 

The Good Fight

Crafting Through Chronic Illness

Untold numbers of people suffering chronic conditions are turning to Etsy to find purpose and a livelihood through illness.

Balancing a chronic illness and traditional employment isn’t easy. For those with an artistic streak, some turn to platforms like Etsy to create on their timeline and sell to a global audience.  

Lucy Blair measuring her hippos.

Lucy Blaire measuring her hippos.

In 2006, when Lucy Blaire was diagnosed with Crohn’s disease, she lived in Boston with her boyfriend (now husband), working full time as a seamstress. After her diagnosis, she continued working, but taking 22 or 23 pills a day made it a challenge.  

“The medication made me feel terrible, the disease made me feel terrible,” Blaire says. “Continuing to work on someone else’s schedule was nearly impossible.”

After trying several different medications, seeing several doctors and struggling through work, Blaire and her boyfriend moved to upstate New York to focus on her health and be closer to her family. “Everything was so new, you have to try a billion different things medication-wise until you find something that works for you,” she says.

Blaire found a new doctor in Albany, and her Crohn’s is now in remission. But instead of getting a full-time job, she opted for self-employment. After freelancing as a seamstress making custom drapes didn’t take off, she began making oilcloth makeup bags and eventually opened an Etsy shop called Lucy Blaire Creations.

Blaire also loves creating sewing patterns but found it hard to meet magazine deadlines now that she has two kids. When Etsy added digital downloads, she began selling patterns (this pattern for a stuffed hippo is her top seller) as a way to scale up her business. Etsy processes payment and emails the PDFs to customers, so Blaire doesn’t have to manage that process.

A look inside Blair's crafting studio.

A look inside Blair’s crafting studio.

She credits Etsy with giving her the flexibility she needs to take care of her kids and her health. “Having children or having a chronic disease, it doesn’t make working impossible but it makes working on somebody else’s schedule impossible,” she says. “To be able to run my own shop or take care of a digital download is just so freeing. Maybe today I feel good in the morning, so I can work on my own schedule.”

Katrina Isbill-Floyd, aka Bella McBride from McBride House in New Brunswick, Canada, can relate. Isbill-Floyd was diagnosed with fibromyalgia in her early twenties. She tried working as a botanist but found the travel and work to be overwhelming while also dealing with her chronic pain issues.

“Over the years I have fought this tooth and nail and have struggled to find a proper balance,” she says. “Because of this, working outside my home became more and more difficult so I needed a way to supplement our income and give myself a creative outlet. I’ve always wanted to have my own business and finally decided that time passes no matter what, so why not give it a try?”

Isbill-Floyd opened an Etsy shop selling needle-felted animals in 2009. “It still astounds me that you can take a clump of soft fluffy wool and with the manipulation of a single barbed needle you can create a 3D piece,” she says. “It’s very relaxing if you just let your mind drift and let the wool do the talking.”

Fortunately, muscle pain from her fibromyalgia doesn’t stop her from felting. “In fact, I find that if I don’t do it for a few days, my hands will begin to ache,” she says. “It’s such a soft gentle movement that it really seems to help with the pain.”

Isbill-Floyd also appreciates Etsy’s broad customer base. “In my small community there is no way I would have been able to sell what I was making, let alone have the energy to do so,” she says, “and therefore, would not have been able to have either the confidence or the skill coming from continual practice.” She’s now doing a few select shows a year and credits Etsy with giving her the confidence and practice to do so.

“I’ve never been sicker, but I’ve also never been happier,” Isbill-Floyd says. “My needle felting is what gets me up in the morning and gives me something to look forward to.”

I’ve never been sicker, but I’ve also never been happier.

For Jen Sulligan, who was diagnosed with stage IV Hodgkin’s lymphoma in 2010, making soap and lip balm for her Etsy shop Little Batch Apothecary gave her a much-needed distraction. “I got through treatments [six months of chemotherapy] by looking forward to the days when I felt strong enough to make soap,” Sulligan says.

Katrina Isbill-Floyd crafts through a bout of fibromyalgia.

Katrina Isbill-Floyd crafts through a bout of fibromyalgia.

Sulligan got interested in soap-making through family stories. “I’d heard a story that, back in the day, my great great grandmother would make basic soap from scratch in a big old tub in her back yard,” she says. “I was intrigued. Although her recipe unfortunately did not get passed down through the generations, through lots of reading and experimentation I was able develop my own fantastic formulation of soap.” She no longer makes soap to sell but she does make it for her family. Her shop now features other products including cologne, perfume oil, hand and body cream and candles.

After Sulligan went into remission, she set to work turning her shop into her full-time job rather than returning to her career as a school librarian. “I like the virtual shopping mall aspect of Etsy,” she says. “I get customers coming into my shop that I might not otherwise have come into contact with on my own non-Etsy website.”

Sulligan launched a stand-alone website for Little Batch Apothecary soon after completing treatment and sold her products at craft shows and in a few stores. “I did little to no advertising,” she says. “I still don’t really advertise. The quality of my products and my customer service is what grew my business.”

Turning her craft into a full-time business isn’t easy, but Sulligan enjoys working for herself. “It’s so easy to let our circumstances predict our lives,” she says. “Although a tougher undertaking, it’s a lot more rewarding to take the reins and guide your life where you want it to go.”

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.”

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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.”

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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!”

The Good Fight

How This Non-Profit Gets The World’s Hottest Artists To Give Hospitals Their Art

For over 16 years, artists such as Jeff Koons, Frank Stella, Terry Richardson and more have been working with RxArt to make hospitals as beautiful as museums.

Few would mistake a hospital for a fine art museum. If there is art hanging on a hospital’s walls, it usually comes in the form of tacked-up motivational posters, sun-bleached photographs, generic pastoral prints, and–if you’re lucky–an ’80s-era motivational mural.

Still, though the art hanging in your local may be lackluster, few hospitals let their walls go totally bare. It raises a real question: what is hospital art for? Why is it there? Is it only meant to be a momentary diversion from the tedium and passive dread of being sick? Or can it serve some greater purpose?

Diane Brown, president of RxArt.

Diane Brown, president of RxArt.

Diane Brown, president of RxArt, definitely thinks so. For the last sixteen years, Diane has devoted herself to the singular calling of replacing the sad stock prints in hospitals with museum-quality installations from some of world’s hottest artists. Terry Richardson, Jeff Koons, Frank Stella, and many, many more have all contributed art to her cause.

Long before she founded RxArt, Diane had set up her life at the intersection of medicine and the arts. In her earliest days, she worked in cancer research, while simultaneously pursuing at master’s in art history. Diane soon dropped out–“I just didn’t think I was being taught to think critically”–but devoted the next several years to self-education. By 1976, she had left medicine entirely to start her first art gallery in Washington D.C.; seven years later, she moved to New York, and ran her own gallery there for almost a decade, before going to work as a personal curator for one of the Big Apple’s most serious art collectors.

Despite her experience, Diane never really thought much about hospital art until she had to undergo a CAT scan. “It frightened me badly,” says Diane, remembering how trapped and intimidated she felt under the shadow of the alien-seeming medical machinery. “I wanted to get out of the room; I was terrified.” Strapped in a gurney with an IV in her arm, it was impossible to run, but Diane soon found another way to escape: through art. “I imagined a beautiful artwork on the ceiling by British artist Matthew Ritchie, lush with intricate iconography.”

Jeff Koons painted the CAT scan room at Advocate's Hospital with monkeys, hearts, and dogs.

Jeff Koons painted the CAT scan room at Advocate’s Hospital with monkeys, hearts, and dogs.

Her heart stopped racing as she became totally enraptured by this illusory painting. By the time the CAT scan was over, Diane knew she had to do this for other people, upgrading the sad and dingy art in hospitals with better works capable of capturing the imaginations of the sick and the scared.

“I started asking curators and artists I knew: is there a way I can put museum-quality art in hospitals while still paying artists but not charging hospitals?” she remembers. “Eventually, I met one philanthropist, who told me to try it, and RxArt was born.”

Over the past decade and a half years, RxArt has installed exhibitions in literally dozens of hospitals around the country, including Rockefeller University Hospital, Beth Israel Medical Center, Mount Sinai Hospital, San Francisco General, and more. Although in its earlier incarnation, the org hung framed art in corridors and patient rooms, RxArt now focuses on site-specific installations in pediatric hospitals. Together with RxArt, Diane works to pair children’s hospitals with artists to give dreary spaces a fun and colorful upgrade, whether that’s asking Kenny Scharff to tag an entire stairwell in the Pediatric and Adolescent Psychiatric Units at Kings County Hospital, or tasking Dan Colen to freeze frame an entire 25,000 square foot recreation room in explosive rainbow-colored confetti.

Terry Richardson's photographs hang on the walls of King's County hospitals.

Terry Richardson’s photographs hang on the walls of King’s County hospitals.

One particularly poignant example of what RxArt is trying to achieve is from American fashion and portrait photographer Terry Richardson. Richardson, who has shot intimate portraits of everyone from President Obama to Lady Gaga, was asked by RxArt to contribute photos for a pediatrics hallway at Kings County Hospital (a frequent RxArt partner). “Before Terry came in, this hallway had prints of Monet’s Haystacks hanging,” recalls Diane. “I remember touring it with a doctor, who pointed to them, and said to me: ‘These are city kids… what do they know about Provence?’”

Later, Diane would discover that part of the reason such generic art hung in this hallway at Kings County was because the children had a tendency to destroy anything that went up there. No individual work survived very long. (“I wish they’d told me that before Terry came in,” rues Diane.) Regardless, when Richardson came along, he replaced the sad Haystacks prints with photos the kids at Kings County could relate to: photos of other every day kids, smiling and giving a thumbs up while looking straight into the camera.

It’s not just an affirming message; it’s a reminder to the kids at Kings County that there’s an entire world outside of the hospital that cares about them. An easy thing for sick people to lose sight of, which might go along way to explaining why Richardson’s photos are still hanging unmolested years later. “It’s the first thing they’ve been able to hang on the walls that hasn’t been destroyed,” marvels Diane.

Kenny Scharff tags a hallway at Kings County Hospital

Kenny Scharff tags a hallway at Kings County Hospital

This goes to the heart of why RxArt does what it does, and the related question: what is hospital art for? Yes, hospital art is for distracting the scared, the bored, the lonesome, or the person in pain, but so are televisions, magazines, and hospital clowns. What makes putting putting fine contemporary art on the walls of a hospital uniquely important is that it reaffirms to the people inside that a beautiful world awaits them, full of people who care and want them to get healthy.

I passionately believe that your whole life becomes richer when you love art.

And if RxArt can also help a new generation of kids fall in love with contemporary art? All the better, says Diane. “I passionately believe that your whole life becomes richer when you love art,” she says. “You become so much more aware; you observe life differently, and see things sculpturally. Falling in love changed everything for me. I just want to do that for other people.”

The Good Fight

The Young Invisibles Of Cancer

"In most people's minds, cancer isn't a college student," says Matthew Zachary of Stupid Cancer. "It's a bald kid, or a 65-year-old woman..."

Ask any random twenty-something if they want to have kids someday, and you’ll get a host of answers. “Maybe.” “Definitely not.” “If I meet the right partner.” “Yes, absolutely!” “I don’t know.” Which is, if you think about it, the great thing about being in your twenties. You can answer whatever you want to the question, because you still have time. You can always change your mind.

Unless you get cancer. Then the decision might just be taken away from you.

The lack of awareness about fertility and cancer treatments is something that gets under the skin of Matthew Zachary, founder of Stupid Cancer, the country’s largest nonprofit dedicated to providing support, awareness, and advocacy for young adults with cancer. The father of two twin six-year olds whom, but for chance, he might never have been able to have, fertility is a particularly important subject.

“Fertility should be the cornerstone of young adult cancer,” Zachary tells me by phone, with the thick Brooklyn accent of a born-and-raised New Yorker. “Cancer sucks enough to deal with as a young person without it taking away our ability to be moms or dads one day. But most young adults diagnosed with cancer are never told their treatments can make them sterile.”

Outside of running Stupid Cancer, Matthew Zachary is a trained concert pianist who has released two albums.

Outside of running Stupid Cancer, Matthew Zachary is a trained concert pianist who has released two albums.

Zachary knows what he’s talking about. In 1995, while studying film at the University of Southern California, Zachary’s grad school career was derailed by brain cancer, when he was just 21. And that wasn’t the only thing cancer derailed. A classically-trained concert pianist, one of Zachary’s earliest symptoms was the loss of mobility in his left hand, rendering him incapable of doing one of the things he loved most at a time when he was already sick. “It took a while for the doctors to find anything,” Zachary admits ,“but I can’t fault them. How many kids who are pianists exhibit early brain tumor symptoms?”

Eventually, Zachary was diagnosed, and began a regimen of surgeries and radiation, which eventually saw him go into remission and allowed him to play piano again. But during this period, Zachary learned first hand that young adults are one of the most invisible subgroups of cancer patients. “In most people’s minds, cancer isn’t a college student, or a teenager, or a thirty-something,” Zachary points out. “It’s a bald kid, or a 65-year-old woman running a relay for breast cancer.” The issue is that young adults in the prime of their life are somehow viewed as immortal, or at the very least, tougher and more capable of standing up to the hardships of cancer than other groups.

In most people’s minds, cancer isn’t a college student, or a teenager, or a thirty-something…

But Zachary cautions this isn’t necessarily so. First of all, there’s the logistics of dealing with cancer as a young adult. “Statistically, most young adults are underinsured, which can be in many ways worse than being uninsured when you’re dealing with cancer,” Zachary says. “If you’re underinsured, you’re stuck with your employer’s provider when you have cancer, and they can more easily deny you coverage. There are people who quit their jobs when they get cancer, just so they can go on Medicaid.” No wonder, then, that about two-thirds of all bankruptcies are medical, and about two-thirds of those are for people under 44.

Past the merely logistical issues with getting cancer at a young age, though, come the psychological. Because let’s face it. As young adults, the best of us are, as Zachary succinctly puts it, “hot messes” trying to figure out who we are, and how to make our way in the world. Now add the psychic baggage of cancer to the mix. “Take all the stuff that’s really hard to do in your twenties and then multiply it by thousands,” Zachary says. “Take dating. You’re dying, you’re bald, you’re sick all the time, and in my case, I was impotent. Who wants to date the cancer guy?”

Zachary’s been married for 13 years, so someone obviously did want to date the cancer guy. But the fears, the loneliness, and the invisibility he felt as a young man with brain cancer dealing with these issues are the ones which eventually led Zachary to found Stupid Cancer, in order to be able to provide resources and solidarity to more people going through what he did. What started as a grassroots club for young people with cancer has now, twenty years later, evolved into an international community. “You don’t have to be a young adult to support Stupid Cancer. You can be a boomer, a teenager, a middle-aged American, whatever. It’s a community for everyone, just viewed through this lens, which is eventually relatable to everyone, about what it’s like to be in your twenties and thirties.”

Matthew Zachary speaking at Cancer Con.

Matthew Zachary speaking at Cancer Con.

Ultimately, though, it all comes back to fertility. As his kids, home from school, rough-housed in the background, Zachary repeatedly told me on the phone that if there’s anything the cancer community needs to do better, it’s make sure that young cancer patients have a reproductive future.

“Most people diagnosed with cancer in their fertile years are simply not told their treatments can make them sterile, or impede their ability to become a mom or dad one day,” Zachary says bluntly. “There are women who have stage 4 cancer whose doctors never tell them about fertility preservation, who end up living, and never being able to have kids, because their doctors made that decision for them.”

That’s why Stupid Cancer advocates for legislation where caregivers will be legally responsible to ensure fertility preservation–including banking sperm, freezing eggs, and harvesting embryos–for cancer patients. After all, fertility preservation is the only reason Zachary has his two beautiful daughters today… but it also put an enormous financial hardship on his family.

Most people diagnosed with cancer in their fertile years are simply not told their treatments can make them sterile…

“I was lucky enough to have a doctor who did make me aware of what could happen to my fertility, and bank my sperm,” he says. “But it cost me $5,000 up front and $2,500 a year until my wife and I decided to have kids. Then it cost us significantly more for in vitro fertilization. So here me and my wife are, staring down a home equity loan to be a Mom and Dad. I love my kids–they’re healthy and beautiful and we got lucky–but is it okay that we had to effectively buy our children because cancer took them away from me? That insurance doesn’t cover this is a burden on the economy.”

Among other things, Stupid Cancer exists to help try to ameliorate some of that hardship for other would-be moms or dads with cancer. To give them the right to change their mind about if they want to have kids down the road. And, of course, to make sure that they have the resources they need to survive. Because if you get cancer in your twenties? “It’s really going to suck,” Zachary says. “But we can help it suck less.”

You can find out more information about Stupid Cancer here.

The Good Fight

Giving Mexico New Wheels and Limbs

In Arizona, a group of paraplegics and amputees work to provide affordable wheelchairs and prosthetic limbs to those south of the border.

It’s a sad but true fact that incidents of disability and chronic illness are higher amongst those who can least afford to not be healthy. This is as true in Mexico as it is in the United States, where as many as 2% of the population – or over 2 million people – live with a disability, most of them well below the poverty line. And how much help does the government of the 11th most populated country on Earth provide?

To answer that question, William Neubauer, a retired surgeon living in an old cowboy ranch near the Arizona-Mexico border, likes to tell a gruesome story. Running up the waist of Central America from Venezuela, there is an ad hoc network of trains used by migrants to cheaply and quickly reach the U.S. where work is more plentiful. But it’s not a safe trip. Colloquially, this network is known as El tren de la muerte, or The Death Train, and travelers don’t buy tickets. They ride on top, where they often fall off, plummeting beneath the wheels of the train.

Recently, Neubauer met a man who had lost his legs on the Death Train, 30 years prior. Yet in these three decades, this man had never once been helped by the Mexican government. “Here’s this guy, sitting there in this terrible rickety wheelchair,” remembers Neubauer. “He’s unable to work, Mexico didn’t provide him with anything.”

A worker in ARSOBO's wheelchair workchops creates the frame for a new chair.

A worker in ARSOBO’s wheelchair workchops creates the frame for a new chair.

So Neubauer did what he’s done dozens of times before. He gave the man new legs. Prosthetic legs, to be more precise. Along with wheelchairs and hearing aids, Neubauer distributes affordable prosthetics as part of ARSOBO, an American non-profit that crosses the Arizona-Sonora border to help underprivileged Mexicans living with disabilities.

The problem is huge. According to ARSOBO, while 2% of all Mexicans are disabled, a full half of that number – or 11 million people – are in need of a wheelchair. An additional 786,100 amputees need costly prosthetics, and 630,000 more live with serious hearing loss. But getting impoverished Mexicans the devices they need is Herculean.

Take wheelchairs, for example. In America, an entry-level wheelchair costs around $2,000. For those living on the bottom rung of Mexican society, that might as well be $200,000, and even if they could afford it, the wheelchair design is completely unsuited for the realities of day-to-day life. Their tiny front wheels get stuck in the cracks and drainage grates that are ubiquitous through Mexican cities. The wheels, meanwhile, can not easily traverse Mexico’s ubiquitous unpaved roads.

Another ARSOBO worker helps craft a colorful prosthetic leg.

Another ARSOBO worker helps craft a colorful prosthetic leg.

ARSOBO’s answer to this problem? Design a better wheelchair. Instead of distributing off-the-shelf wheelchairs, they pair those in need with a specially designed wheelchair created by Ralf Hotchkiss. A wheelchair-rider himself, Hotchkiss’s design is called the RoughRider, a super-durable chair with a 2mm steel frame that uses mountain biking wheels and extra-wide front wheels to allow riders to easily traverse rugged conditions. “They’re basically unbreakable,” Neubauer brags, but if they do break? They use simple bicycle wheels, meaning they can be repaired in any small town bike shop for cheap.

Instead of costing $2,000 to make, ARSOBO can produce a RoughRider wheelchair for less than $300. Even that, though, is subsidized by ARSOBO’s state-side donors. The end cost to the rider-in-need, Neubauer says, is whatever they can afford to pay, even if it’s as little as a few dollars. (“My job is to make this very bad business plan work,” laughs Neubauer.) But they have to pay something. “Buy-in is important. If you just give someone something, they don’t value it as much. They can’t take pride in it the same way.”

This concept of buy-in is one that’s important to ARSOBO all around. Like their wheelchairs, ARSOBO expects the people who need their prosthetics (which are even more expensive to manufacture and custom-fit) and hearing aids to pay what they can. But ARSOBO itself also buys into the community of paraplegics and amputees it supports. All ARSOBO chairs and prosthetics are manufactured by native Mexicans who are in wheelchairs or amputees themselves. Asked why ARSOBO makes a point of hiring these employees, Neubauer says that it’s only in part because the best person to mod a wheelchair or a prosthetic limb is someone with the experience of living one. It’s also a simple issue of humanitarianism. “In Mexico, if you have a disability, it’s incredibly hard to find employment,” he says. “If we didn’t employ our workers, they just wouldn’t be employed.”

One of the many people ARSOBO has helped.

One of the many people ARSOBO has helped.

Asked if he finds being surrounded by such poverty and disability depressing, Neubauer sounds like he thinks I must be crazy. “Are you kidding?” he scoffs. “Before I did this, I was a surgeon. I did over 25,000 operations, and I was proud of everyone, but right now, on a one-by-one basis, this is easily the best thing I’ve ever done.” The chance to make a positive impact on a beautiful but disenfranchised person, to help them reclaim their life, is simply without parallel.

Listening to Neubauer’s stories about the people he’s helped, it’s easy to see what he means. He talks about a little girl who was put into an orphanage because of her debilitating cerebral palsy; it was only after ARSOBO provided her with a wheelchair that she was able to be adopted, and now lives in a loving household with her grandparents, who couldn’t previously care for her because of her extreme mobility issues. He talks about a little boy born without arms and legs, whose biggest complaint about his ARSOBO-provided prosthetics was that he wasn’t growing along with his friends… until ARSOBO made that happen too. And he speaks about a gorgeous young 20-year-old woman who, after being bitten by a tick, lost both arms and legs to sepsis. Today, she walks around on computer-controlled prosthetics worth a quarter-million dollars, thanks to ARSOBO.

“Who would be depressed to take part in that?”