The Good Fight

The Criminologist Who Came Out Of The Closet As Mentally Ill

When Risdon Slate stopped taking his lithium, he ended up in jail. Now, he helps train cops to know the difference between a criminal and a person in crisis.

Risdon Slate knows first hand what can happen when a law-abiding man suffering a mental episode gets handcuffed for behaving strangely in public. He knows this because it happened to him. What he endured in that jail cell–locked up during a manic episode that befuddled police–has fueled Slate’s long campaign to lessen the chances that others with mental illness will needlessly wind up behind bars.

 

Risdon Slate tours the country, helping train law enforcement officials on how to deal compassionately with the mentally ill. Photo: Jamaica Gillmer

“At no point—not when I was arrested, not when I was booked into the jail, not when I stood before that judge—did anyone see that my problem had nothing to do with me being a criminal,” says the 57-year old, who heads up Florida Southern College’s criminology department. “I wasn’t a criminal. No one paid any attention to what was really wrong with me.”

Slate’s one-and-only arrest happened when he was 34. The police were called after he was discovered marching around a makeshift fortress of books that he built in the parking lot of a South Carolina apartment complex. When Slate’s wife told the officers that Slate has bipolar disorder, they let him off with a warning. The warning didn’t take: the next day, Slate–off his meds–was arrested. He had just dived naked into the apartment complex’s pool.  

I wasn’t a criminal. No one paid any attention to what was really wrong with me.

After that run-in with the law, Slate got back on lithium, which helps control his disease to this day. But in a very real way, that incident continues to be a driving force in his life. His tours around the country to train members of the criminal justice system to have a more nuanced view of mental illness.

Right now, the nation’s prisons house more mentally ill people than psychiatric hospitals. That’s partly because many police officers don’t know what to do with a person experiencing a mental episode. Slate advocates a more informed and humane approach, where the mentally ill–particularly those who are nonviolent–are locked up as the last resort, not the first.

Slate poses with some of his “students.” Photo: Jamaica Gillmer

Being open about his own mental illness is central to Slate’s work. Yet, the fact that he is on lithium surprises some of the law-enforcement officials he trains; he doesn’t “look” mentally ill, they’ll say. But Slate is quick to point out that mentally ill people don’t usually appear out-of-place unless they are having a crisis: for example, because they have gone off their meds, or their medication has otherwise stopped working.

In other words, just because a person in crisis is acting strangely doesn’t mean they are a de facto criminal.

“I let officers know they may be the one person that an individual, particularly if it’s their first psychotic break, can look to and hear someone say, ‘There is hope for you. You can make something positive out of this,'” Slate says. “They can be that crucial individual that can get the person to a place where they get medical help, recover, and become productive citizens.”

Just because a person in crisis is acting strangely doesn’t mean they are a de facto criminal.

Slate’s own arrest was triggered by such a crisis.

When he was a 34-year-old parole officer, a new psychiatrist took Slate off the lithium he’d been on for several years. Slate didn’t have bipolar disorder, the psychiatrist argued. Instead, he was merely stressed.

But stopping Slate’s meds cold-turkey had some quick and furious effects. At a South Carolina college’s football game, Slate began hallucinating. On the field, players morphed into kings and knights on a chessboard right before his eyes. By the game’s third quarter, Slate was in full-tilt manic mode. Worried, his wife led him to the stadium parking lot, where she called EMTs: her husband was having an episode.

When they arrived, Slate–fast-tongued and persuasive–countered: his wife was the one in distress, not him. They checked her soaring blood pressure–understandable, Slate says, under the circumstances–and sent the couple on their way.

When he got back to their apartment complex, Slate immediately began building his parking-lot fortress of books. He was arrested the next day.

“Those police back in South Carolina? If they’d had better training, they could have diverted me from lock-up.'” Photo: Jamaica Gillmer

“The rest is history,” Slate says. “This is my spin on it: Getting arrested was God’s way of saying to me, ‘You’ve got to come out of closet about your mental illness. Maybe, that will be your way to help others.’”

He helps himself by rigorously following his regimen of prescribed meds and overall self-care. Being open about his mental illness and how he treats it shows other mentally ill people how they, too, can thrive. It also bolsters his mission to help foster a criminal justice system whose dealings with the mentally ill are understanding and compassionate. Slate’s core expertise and beliefs landed him on the National Alliance of Mental Illness’ board of directors for several years. He was called as an expert witness during the September 2000 congressional hearings on mental health, which, in turn, resulted in funding for the nation’s first mental health treatment courts.

The most recent data from the Bureau of Justice Statistics suggests that a quarter of those in prison or awaiting trial are mentally ill. Slate believes that number will decrease if police have proper training in mental health issues, as well as access to community-based mental health programs.

“Those police back in South Carolina? If they’d had better training, they could have diverted me from lock-up. They could have told people at the jail that I was mentally ill,” Slate says. Luckily, though, things are getting better. “These days, there are [jails whose intake papers] have a little block to check off: ‘Does this person have signs of mental illness?’ People running things know they need to take a different tack.”

You’ve got to come out of closet about your mental illness. Maybe, that will be your way to help others.

Which isn’t to say some correctional facilities aren’t doing a good job. A handful of states have made major strides on this front, Slate says. But even the best available treatment won’t work if cops don’t know what to look for.

“There are some beautiful, perfect models of what to do out there,” he says. “But they’re perfect models for an imperfect world. That’s one of the reasons this training is so key. But, again, if you don’t have treatment to link people with mental illness to, that model isn’t worth the paper it’s printed on.”

The need for stronger methods of dealing with the mentally ill within the criminal justice system is what compels Slate to continue his work. “Ever since coming out of the closet [as mentally ill], my mission has been to prevent others with mental illness from coming into contact with the criminal justice system,” says Slate.

And if they have to come into contact with that system? Slate hopes he’s made it friendlier to the mentally ill than it was when he got arrested during his own mental breakdown. During an episode, the mentally ill who commit crimes often are totally unaware of what they’re doing. But that doesn’t necessarily make them criminals, Slate says. The criminal justice system should exist to protect victims of all stripes…  including those who are the victims of their own minds turning against them.

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

Your Not-So-Secret Admirer

Born with a rare spinal disorder, artist Alyssa Andrews sends out custom Valentine's cards to strangers every year so that no one feels alone.

This year, Alyssa Andrews mailed over one hundred Valentine’s cards. Last year, she did the same. But as she explains to me in an interview, the 29-year-old illustrator based in New York City is not a Casanova, but an empath: She takes requests for custom cards, designs and creates them by hand, and mails them out to members of the queer community who need some cheering up over the holiday season, all free of charge.

While the holidays are touted as positive and fulfilling, for people who lack support systems or healthy personal relationships, they can feel overwhelming and isolating. As a queer woman who lives with a rare and chronic condition that impacts her ability to walk, Alyssa knows all too well the importance of human connection and kindness.

Alyssa Andrew in her New York studio.

An illustrator by trade, Alyssa has used her art as a way to connect with others for years, including strangers. “When I first moved to the city,” she explains, “I was really horrified at the way the homeless were treated. I used to buy coffees on my lunch breaks, or on my way into work in the morning, and write notes on them, and hand them out to folks.”

When tragedy struck her own community, Alyssa was motivated to spread love in the way she could do it best: through her art. “The card project wasn’t a far leap from what I was already doing for strangers,” she says, “but last year around this time, we lost a really valuable woman in our community to suicide, and folks were reeling from that. I looked at the card project as an opportunity to remind members of the community that they’re loved and thought of even when times feel really hard.”

When Alyssa began her Valentine’s project in 2016, she posted her offer in online groups for the queer community. What started as twenty responses from those local to her tristate area quickly grew to over one hundred requests, including from around the globe.

Some of Andrews’ card designs.

This year, Alyssa has had a similarly big response, with a common thread between those all of those whom reached out: Most everyone wants to know how they, too, can give back to strangers in need.

“I receive so many responses asking what I want in return for them, or how folks can repay me,” she explains. “It both warms my heart, and kind of breaks it–that an act of kindness anymore is almost met with suspicion of some sort. When folks are really wanting to give something back I always just ask that they do something nice for someone else. It can be big or small, like buying a coffee for the person behind you in line, or leaving your own little love note for a stranger somewhere.”

It both warms my heart, and kind of breaks it–that an act of kindness anymore is almost met with suspicion of some sort.

“I think it’s really beautiful that people reach out about doing things as well,” she says. “If the goal is spreading love, it’s all the better when it extends well beyond what I’m doing.”

In terms of craft and production, the artist developed a system that worked within the confines of her apartment space: First, she spreads big sheets of bristol paper on the floor and puts a grid out for each card. Then, she uses Prismacolor markers to create each design by hand. Once the design is complete, she cuts the card, records it as a “complete” in her spreadsheet, and prepares it for the mail, which her partner helps her organize and send out. Organization, Alyssa notes, is key to keep the project from becoming overwhelming.

“Believe it or not, the process is a lot like being a kid and coloring on the floor when you parents are being boring adults,” she jokes.

Last year, Alyssa survived her 53rd surgery. Born with Myelomeningocele, a rare and complicated form of a neural tube defect, Alyssa’s identity as a marginalized person exists in multiple planes: She is a woman, she is queer, and she lives with a life-long disability. For this reason, she understands all too well how important it is to show care and kindness to those around her, from her partner, to her coworkers, to strangers on the street.

Like others with Myelomeningocele, Alyssa was born with a “tethered cord” in her spine, meaning that a mass formed in her spine as she was developing in the womb. Now, she lacks a complete spine and lives with a tumor that has grown and pinned her spinal cord beyond its typical position. At 18, complications caused incomplete paraplegia. A decade later, Alyssa can walk again, but she lacks feeling in her lower extremities and her blood circulation is poor.

“I currently am fortunate to walk,” she jokes, “but if I had to describe it, I just look like I’m two-stepping to Jay-Z at all times.”  

I currently am fortunate to walk, but if I had to describe it, I just look like I’m two-stepping to Jay-Z at all times.”

For Alyssa, sending cards to her queer community over Valentine’s Day has a second layer of importance. “Even for folks with great support systems, Valentine’s Day is just such a heteronormative holiday,” she explains. “There’s not much visibility out there for queer people. With all the highlights on things like marriage equality and trans-visibility in the last few years, it’s often really disregarded how much mistreatment the LGBTQ community continues to face.”

Alyssa’s cards are not only custom drawn, but also include a personalized message. Some people request cards for themselves, in which case Alyssa writes them a note full of encouragement. But a surprising amount of people request cards on behalf of others, continuing the circle of kindness.

“This year, I was contacted by an individual who works with blind students,” Alyssa explains. “They were wondering if I’d make cards that they could then add braille to, which I thought was just awesome.”

Andrews hopes her cards will make lonely people in marginalized communities feel accepted.

Alyssa has no political agenda with her cards, but she does believe that marginalized communities need all the love and support they can get, given recent political movements. “I think that morale at the moment is pretty low in general, “she explains, “and there’s a lot of animosity and fear spreading all over the place. So if my cards do anything to kind of counter that, that’s certainly all the better.”

Alyssa’s medical history is a complicated one, but she refuses to let it define her. “There’s a lot of public misconceptions about my abilities; my intelligence; constant questioning of my body and what may have happened to it,” she shares. “I don’t often give the satisfaction of explaining myself to people, but I do strongly advocate against being used as anyone’s inspiration simply for being,” she explains.  

I think no matter who you are or what you’re facing, it’s so easy to feel devalued or unseen in the world.

“I think that’s really harmful and disrespectful to disabled folks… At the end of my life, if I’m known for anything, I hope that it’s for the things I’ve done in my life, rather than the fact that I woke up every day in a body people look down upon. You know,” she jokes, “I put my pants on just like anybody else: only if I absolutely have to.”

At her core, Alyssa is all about the positive actions she puts into the world.

“I think no matter who you are or what you’re facing, it’s so easy to feel devalued or unseen in the world,” she explains. “If my little project catches on in a way that helps people to feel seen, and know their value, I’m extremely grateful.”

 


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The Good Fight

The Patient Whisperer

In medicine, plain language saves lives, which is why Jennifer Pearce dedicated her career to helping patients understand doctors, and the other way around.

Jennifer Pearce, the founder of Plain Language Health, was standing in her driveway on a December morning in 2006 when she came face to face with the woman who would change the course of her career.

“One day I picked up the paper from my driveway, and on the front page was an article about a young woman with lupus named Nikki White,” Pearce says. “Here she was, not much younger than I, and [the article] recounted how — through a series of mishaps, miscommunications, misunderstandings, and administrative snafus — she lost her battle with systemic lupus and lost her life at 32.”

The article that changed Jennifer Pearce’s life.

Pearce herself was already 15 years into her own lupus journey — an experience so fraught with confusions that it had led her to change careers to patient engagement advocacy. But White’s story in particular motivated Pearce to double down on her efforts. In White’s tragedy Pearce recognized the fate that could all too easily have been her own.

“That’s the day I decided. I already knew how to speak Patient; I needed to learn how to speak Health System. I decided then that I would earn a Master’s degree in Health Care Administration so I could set about effecting change from the inside.”

Entering the System

Jennifer Pearce was just one day shy of her 20th birthday when she first found out she had lupus.

The California native had begun experiencing odd symptoms during the summer between her sophomore and junior years of college, starting with a bad cough, extreme fatigue, and an aching feeling in her lungs.

Jennifer Pearce.

First, Pearce was diagnosed with whooping cough. (It wasn’t.) Then blood work suggested she had syphilis. (She didn’t.) More appointments and tests determined the whooping cough was actually a type of lung inflammation called pleurisy, while the false positive for syphilis turned out to be Antiphospholipid Antibody Syndrome (APS), an autoimmune condition that causes blood clots. APS is seen in about half of all lupus patients.

Eventually a physician put the conditions and clues together. “It took about three months, quite a few tests, and quite a few diagnoses to figure out that I indeed had systemic lupus,” Pearce she says.

Systemic lupus erythematosus, or simply lupus, is a chronic autoimmune disease in which the body’s immune system attacks its own tissue and organs. The inflammation that results can manifest in symptoms as varied as facial rash, joint pain, cough, photosensitivity, unexplainable fatigue, confusion, and memory loss.

Pearce’s condition, which she has now managed for more than 20 years, would ultimately prove relatively mild. But rather than the experience of lupus itself, it’s the experience of being a lupus patient that has made the greatest impact on shaping Pearce’s career.

Navigating the System

From the start of her diagnostic journey, Pearce says, “I was interacting with the health system by myself, and I was very passive because that’s how I’d been raised. You don’t challenge the doctor; you listen and nod your head and say thank you. And boy, did that lead to an unpleasant few months.”

Like most people on long and twisting healthcare paths, Pearce found herself being bounced around “from primary care to specialist to specialist to specialist,” navigating the health system without a map, compass, or rudder. In fact, she eventually came to realize that she didn’t even speak the right language.

“I would leave these appointments not fully understanding what had just transpired,” she says. “I knew I was seeing some of the best specialists in the field. Yet despite having a college degree from a good university and being relatively articulate, I left feeling like an idiot. I just couldn’t understand. And I thought, What am I doing wrong here?”

“My big transformation,” she says, “was realizing this wasn’t my fault.”

“My big transformation,” she says, “was realizing this wasn’t my fault.”

Pearce had been working as a marketing writer in a PR firm in San Francisco when her doctor suggested she enroll in a research project at the University of California, San Francisco, aimed at identifying the genes associated with autoimmune diseases, including lupus.

While having blood drawn for the study, Pearce flipped through the program’s enrollment materials. “Being a marketing person, I thought they were . . . Let’s just say they could be improved.”

Pearce’s career as a patient advocate began rewriting medical literature for free to be more easily understood.

She volunteered to re-write the materials for free. “It was 100% selfish, because I wanted them to enroll enough patients to understand this disease better so they could cure it,” Pearce says. But the project ended up benefitting her professionally as well. “It gave me the first taste of what it felt like to write about something I cared about,” she says.

The study’s investigators were so pleased with Pearce’s work they offered her a job. Although it meant taking “a huge pay cut,” she says with a laugh, the position represented a convergence of her personal and professional lives, allowing her to use both the skills gleaned as a writer and the experiences gleaned as a patient for a common purpose: to translate healthcare information into plain language that everyday people can understand.

This need for plain language was perhaps most evident in that research study’s informed consent form.

Working the System

To enroll a patient in a research study, researchers must make clear in writing the study’s purpose, procedures, risks, and potential benefits. They must also lay out practical and legal information, such as the patient’s rights, how their personal and medical information may be used, how long the project will last, and what is expected of the patient’s time and efforts. Together, this set of information forms the basis of the patient’s informed consent.

But Pearce says giving her consent to that genetics research study was anything but informed. Rather, the consent form consisted of pages and pages of legal and medical gobbledygook, the ramifications of which she had no hope of fully comprehending.

The problem lies with too many cooks and not enough empathy.

“With these types of forms, it’s very important that people understand what’s happening,” she says. “But they’re not written to promote understanding.”

The problem, according to Pearce, lies with too many cooks and not enough empathy. Many consent forms, she says, tend to be crafted like contracts rather than informational documents. Legal and regulatory wording sneaks in, as does the highly specialized language of the medical and scientific experts leading the research. What results is a hodgepodge of insider jargon, written at a reading level far beyond that of most adults.

In the process patient understanding gets sacrificed or ignored. “Not out of malice,” she stresses, “but because it’s an afterthought. The irony is, it’s the most important part of the process.”

Pearce felt the genetic research study too important not to participate in, so she signed the mysterious consent form and hoped for the best. She then dedicated her next eight years at UCSF to translating study information into language patients could actually understand and engage with, in part so others like her wouldn’t have to choose between making empowered decisions and contributing to the greater good.

“Life begins at the end of your comfort zone.”

Getting organizations to acknowledge and address these systemic fractures, however, Pearce says, can be akin to pushing a boulder uphill — a boulder that feels extra weighty on the days her own condition flares up.

Pearce has learned to manage her condition, which manifests for her primarily as joint pain and occasional fatigue, by listening to her body — though she admits that, even after 20 years, sometimes her enthusiasm for life can outweigh her listening skills. The invisible nature of lupus also creates a challenge.

“One of the hardest things is that you can look perfectly healthy on the outside but feel poorly on the inside,” she says. “Joint pain and fatigue aren’t visible.”

But knowing how much worse her condition could be, however, keeps Pearce devoted to the task at hand. “I struggle with it certainly. [But] I feel a responsibility to those who have to spend all of their time managing the condition,” she says.

Fighting the System

This past December, Pearce struck out on her own to promote health literacy and patient engagement as a full-time independent consultant. She now works with organizations on the provider, payer, and patient sides of the healthcare transaction — a new angle she hopes will make her efforts even more effective.

“Health is a bottom-line business, period,” she says. “You can only take things so far within those parameters.” In contrast, she hopes the knowledge she’s accrued over her 18 years on the inside will now contribute to helping health systems, communities, patient groups, and policymakers simultaneously from the outside.

Pearce particularly wants to help patients become stronger advocates for themselves, whether that’s in dealing with doctors, understanding paperwork, figuratively navigating care-related systems like insurance and pharmaceuticals, or literally navigating hospital halls.

Pearce’s annotations explain how the system failed Nikki White, an otherwise well-educated, engaged woman who should have been able to navigate it.

But if the deck is already stacked against patients, what can they do to protect themselves? To start, Pearce says, they must accept that healthcare is a game full of wild cards they can’t control.

“If you walk into a healthcare situation where you’re afraid, you’re stressed, you’re ill, or the medication you’re taking has affected your cognitive functioning, your ability to perform tasks and your prose literacy, document literacy, quantitative literacy — that all diminishes,” she explains. “That is why, when you’ve just been told bad news, someone might be talking to you for another 15 minutes, but you don’t hear any of it. It has nothing to do with how intelligent we are, how much school we’ve had. It’s that we’re human beings. This isn’t a case of deficiency on the part of the patients. This is a case of context.”

Unfortunately that context is not built to accommodate patients’ fears, anxieties, and confusions. With many doctors rushed to fit in as many patients as possible to keep the lights on and staff paid, patients are often not afforded sufficient time to absorb and process new, often distressing information, and formulate and articulate appropriate questions. By the time patients are able, it may be weeks before they see their doctor again — at which point, they may be bombarded with new information. The rhythm of the health system, Pearce says, is out of sync with the rhythm of being a human being.

The rhythm of the health system, Pearce says, is out of sync with the rhythm of being a human being.

That’s not to say patients should succumb to feeling powerless and fold, however. Rather, they must recognize these healthcare realities and learn how best to play the hand they’re dealt in order to get the system to work for, rather than against, them. They must be ready to push back.

That means asking questions until they understand the answers, snapping photos of unclear signage, and calling out forms and instructions they don’t understand. It also means being prepared to squeeze the most out of their scant 10-20 minutes of doctor-patient face time.

One tactic Pearce recommends for medical appointments is writing down ahead of time the three questions the patient most needs answered and articulating those questions to the doctor as soon as he or she walks in the door. Doing so sets the agenda for the meeting and guides the conversation to what the patient most needs to accomplish.

Pearce also insists patients start prioritizing their own bottom lines. They must let go of the conservative, deferential approach to medical care and start treating their clinical encounters like any other transaction.

“Would we ever leave the Verizon store without our questions answered about our new phone?” she asks by way of comparison. “No, we’re going to stand there and insist, because we need this phone to work.”

Just like with the phone company, she says, it’s up to the patient to get their medical money’s worth — or throw down their cards and take their business elsewhere. On this point, Pearce pulls no punches. “If you can’t get your needs met with that provider — because that provider is always late, always rushed, doesn’t like to listen, is impatient — switch doctors. You are in control of this. If that appointment isn’t setting you up to succeed, then it’s not worth your dollars or your time.”

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.

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“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.

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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.”