Disability

The Deaf Tanzanian Porters Defying Kilimanjaro Sized Odds

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

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

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

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

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

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

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

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

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

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

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

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

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

Mount Kilimanjaro in all its glory.

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

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

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

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

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

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

Augustino and Ernest, having fun before an ascent.

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

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

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

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

Chronic Illness Disability

Is Marie Kondo and KonMari Compatible With Chronic Illness?

After watching Netflix's new show about the life-changing art of tidying up, I tried it for two weeks to see if it was compatible with my disability. Here's what I learned.

It was another one of those days: a Netflix-and-chill day, in bed, because of a flare-up. My social had been abuzz about Tidying Up With Marie Kondoand my love for reality-TV home makeover shows made me interested. So I decided to binge the first season while I lay in bed.

If you’ve never seen Tidying Up, it’s a show in which Marie Kondo, founder of the KonMari Method, enters people’s home and teaches them to declutter and clean their spaces, using the main criteria that one should only keep objects in their life if they inspire joy.

It’s a nice theory, but as I watched Kondo and the families she was working with energetically clean their spaces, I found myself growing frustrated. None of these people had health conditions. None of these people were disabled.

I looked around my room at the heating pads on the floor and clothes stacked on my dresser, and wondered how I’d ever find the energy to clean in that manner. The KonMari method seemed like yet another system that worked well for able-bodied individuals, but overlooked the unique realities and needs of disabled individuals.

I decided to try the KonMari method myself for two weeks to see what it was like for a disabled person. Here is what I learned.

Lesson One: Don’t Mess With My Bed

The process started off simple enough. Marie Kondo says to start your tidying up process with clothing, and in the show, the first step many of the families take is to take all of their clothes and throw them on the bed to sort. So I pushed open my closet and started tossing everything onto my bed.

Throw all your clothes on your bed to sort. It sounds easy, disability agnostic. But as a person with chronic health issues, I found that as the pile got bigger and bigger, I became increasingly anxious.

The families Kondo worked with on her show seemed to have no issues covering their beds with piles of clothes, but as a disabled person, this is the main place I go to when having a bad day. Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Nearly in tears, I realized that not only did I have to sort through all of this, but I had to do so before I could get to my bed again, which would require a level of energy I wasn’t sure I had.

Marie Kondo suggests starting by finding something you’re certain you want to keep, that sparks such joy that it makes you go ching! when you hold it. That’s your baseline, the feeling you want everything you decide to keep to make you feel. I dug through the pile and grabbed out a pink sweater with a penguin on it, a velvet jumpsuit, and a red and yellow plaid dress – all things that definitely spark joy in me. Soon my ‘yes’ pile was growing with all those pieces of clothing I revert to over and over again, as I tossed into another pile the things I wasn’t so thrilled about.

It was then that I hit a wall, both physically and emotionally. I’d not been at this very long, but I’d reached my body’s max, and without many other options, I curled up amongst my piles of clothes. I realized there was no way I was going to have the energy to do all of the sorting, along with the folding and putting away, on the same day, which is what KonMari suggests.

I needed to come up with a different plan.

Marie Kondo walking by a neatly organized closet.

KonMari asks you to only keep items in your life if they spark joy, but is it compatible with disability?

Lesson Two: It’s Okay To Shift The Rules

For a lot of critics, KonMari comes across as inflexible in its philosophy of austerity. It feels, frankly, like a lot of the pop philosophy du jour: both too strict and too whimsical, somehow, to survive a brush with the reality that life is messy and conflicted.

But as I lay there, I remembered the tender way Kondo worked in Episode 4 with a recent widow, Margie. In the episode, Margie expresses a need for dealing with her deceased husband’s belongings in a different way. Instead of trying to convince her to go against her instincts, Kondo says: “I understand. Let’s shift the rules for you.”

I imagined Kondo seeing me curled on my bed, and decided that she would understand if I shifted the rules. With that I put my clothes that sparked joy in the closet, shoved all the rest of the mountain back haphazardly into my drawers, and decided to come back to my tidying tomorrow, after a much-needed nap.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body. For the rest of my time tidying clothes, I worked on one drawer of clothes at a time. I found that was the most my body could handle in a day, and it helped me to not get so overwhelmed by the process as well. I’d dump out a drawer and sort through, discarding some items and keeping all those that sparked joy.

And it paid off.

I did not anticipate how much pleasure I’d find in folding my clothes into tiny rectangles. I was so excited with the first shirt I folded that I giggled out loud! The process of folding my laundry, which I’ve never much liked before, now brings me great satisfaction and has become a new meditative process for me. By sitting at my kitchen table to fold, I can use Kondo’s method without the pain of bending.

Marie Kondo folding clothes.

I was skeptical at first, but Marie Kondo’s emphasis on clothes-folding really did make me happy.

Lesson 3: Your Things Aren’t Who You Are

KonMari’s emphasis on mindfully going through your possessions, object by object, really makes you think not only about what you want to keep, but why. As I worked through the process, I realized I had kept many things around for reasons besides usefulness or joy, even if I’d convinced myself otherwise.

For example, nostalgia, as if that pair of shoes could transport me back to a different time before my spine had begun fusing itself together. I’d also kept many things from a scarcity mentality, fearing that if I got rid of them, I might not have them at some unexpected time in the future when I needed them, but wouldn’t be able to afford to replace them. And some objects I held onto, not because they sparked joy, but because I felt they were somehow connected to an identity I feared I had left behind in my illness, such as the books I’d used to write my thesis. If I let them go, was I also letting go of my identity as an able-bodied person?

Marie Kondo is right: things are not what make us who we are.

But Marie Kondo is right: things are not what make us who we are. I can appreciate the time I was in school and know the hard work and effort I put into my academics without having the books taking up my physical space. I can recall the joy and confidence of walking in the heels my body no longer can handle wearing without them housing dust bunnies in my closet. I can remember my past without living in it.

Conclusion

During the two weeks I followed the KonMari method, I was able to tidy my clothes and my books. However, I was only able to do this with pretty significant modifications that allowed me to break the tasks into much smaller pieces.

Is KonMari out of touch with the needs of the chronically ill and disabled? Yes and no. I was skeptical at first, but the philosophy of KonMari is one anyone can practice, even if they have to change the rules to accommodate their unique challenges. At the same time, I think Marie Kondo might underestimate the size of the mountain that people with chronic illness have to climb when following her method.

For me, the process of putting everything in one central location and physically touching each item before deciding if I keep it or not just didn’t turn out to be feasible. It’s a lot to ask even an able-bodied person to go through literally everything they own to appraise its value in their life, but for someone with a chronic illness, the energy required multiples tenfold.

Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is.

And that brings up another question. Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is. While I was able to sustain Marie Kondo’s methods for a few weeks, long-term, I think I’ll revert to my organizational ways, because while they might not be as aesthetically pretty, they prioritize energy conservation and pain management… things that are infinitely more important to me as a disabled person.

Several days ago the KonMari.Co Instagram posted a photo with the caption: “The space in which we live should be for the person we are becoming now, not for the person we were in the past.” Instead of my space being crammed with reminders of my past life, it’s important to fill it instead with things that reflect the person I am now and want to become. And maybe the method I use to get there doesn’t really matter.

Disability

Sex Is Better Now I’m Sick

Post-diagnosis, I'm having the best sex of my life, despite MS. But getting here wasn't easy.

Six years ago, I didn’t know about the degenerative disease lurking in my brain. My health hadn’t been great, but doctors chalked it up to post-viral fatigue, suggested I get some exercise, get out more, get a hobby. They ran blood tests, and sent me to an allergy specialist. Every result complied with the healthy diagnosis continually thrust upon me, but I knew something was wrong.

Then I was diagnosed with MS.

Before finding out the literal, physical limitations I have as a result of MS—such as intense fatigue, and near-constant nerve disturbances—I wasn’t thrilled about my sex life, but it also wasn’t a top priority. Despite being with a long-term partner, we had sex infrequently, and my overtures were the ones usually being turned down. Those rebuttals made me feel needy and insecure, but before diagnosis, I accepted the status quo.

MS changed the way I looked at my sex life. Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.

Sex After Sudden Disability

The desire to experience a fuller sex life became even more urgent after a relapse left me numb from the waist down. With intermittent sensation in both of my legs, and sporadic nerve pain—ranging from electric shock prods to the spine to the feeling of a thousand needles pricking my thighs simultaneously—I worried what my sex life would look like, and if I’d even have one.

Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.

I set about regaining my lost orgasm with a lot of solo work. It was a long and pretty lonely journey, with multiple moments in which I thought my sex life was doneso. Meanwhile, my relationship was suffering. My partner’s regular rejections of my overtures became even more personal and hard to take, post-diagnosis. I desperately craved an intimacy that I didn’t have. And with an incurable, unpredictable disease ready to pounce at any moment, I realized that the window left in which to develop my sexual side was time-sensitive.

Reclaiming My Sex Life

Even after my relationship failed, though, I refused to give up. Perseverance was key, and my nerves found new ways of sending signals as my body rewrote its wiring. And let me tell you something. When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.

It was the first step to me reclaiming my sex life, which is today better than it has ever been. With a new partner, it’s the kind of sex life that I, as a disabled person, once believed to be impossible.

When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.

A big part of improving my sex life involved accepting my new body: not just its painful limitations, but the strange sensations it creates on a daily basis. Which means sometimes accepting that sex just isn’t going to happen right now. Before, when I had a bad day of flaring symptoms, I would fixate on everything I couldn’t do or achieve in that moment, especially sex. But you have to feel good for sex to be good, as I have learned to accept from experience. So when fatigue is hung like a meat-hook from my skin, I don’t attempt intimacy, knowing it will do me more harm than good.

Never Give Up

It helps that my partner is supportive. Despite the anxieties that come from being intimate with a disability, he is never upset or impatient if I have to hit pause part way through, whether for an impromptu bathroom break caused by my irritable bladder, or a springing nerve pain reaching for my skin’s surface. He’s in no rush. He’s happy to take his time, always fine with switching things up if it’s not working for me, and never blames me if there’s an awkward moment or clumsy movement, which there will be.

And look, truth time: accessories matter. My vibrator’s more important that it every was before diagnosis. In fact, along with lubrication, it’s essential to my life as a sexually active disabled people.

The health of my sex life is not determined by [my] limitations: it is determined by how I manage them.

On a good day, sex is the ultimate escapism from the unconventional temple that is my body. It can be better than drugs, as endorphins wipe out my discomfort in a way that prescriptions can not. Yes, I have limitations, but as with so many things in chronic illness, the health of my sex life is not determined by those limitations: it is determined by how I manage them.

Being diagnosed made me realize that it’s okay to ask for what I want in my sex life. One day, my sensation might make sex even more challenging than it is right now, but that’s okay. I understand now that great sex doesn’t just happen. The key is to never stop trying.

Disability

5 Cutting-Edge Tech Products That Could Change The Lives Of The Disabled In 2019

From robot gloves that help people with cerebral palsy, to glasses that let disabled people see what's happening hundreds of miles away, these CES tech breakthroughs could change the lives of disabled people everywhere.

Many of the newest smart designs invoke worlds of possibility—and they’re on their way to our homes.

Held in Las Vegas in 2019, the annual CES (Consumer Electronics Show) provided an international stage for showcasing the latest in technical innovation, with 4,500 exhibitions from around the world.

Since its inception fifty years ago, more than 700,000 new products have launched at CES.

This year, 524 exhibitors demonstrated new products in the ‘health’ category—but it’s not just those designated as health that could revolutionize life for people with chronic illness and disabilities.

Here are five

Ergomotion/iOBED Contour Bed

The Erogomotion/iOBED Contour Bed automatically adjusts itself throughout the night to help people with chronic pain sleep soundly.

What it is: A collaboration between adjustable bed makers Ergomotion and iOBED—the creators of technology that senses users’ individual bodies and sleep patterns—has resulted in a bed that monitors your sleep and adjusts accordingly. The mattress is made up of 80 individual air cells and 8 independently controlled zones, meaning it has infinite potential to detect and alleviate things like uncomfortable bed height, firmness, pressure and pain—all while you’re (hopefully) sound asleep. It can also be adjusted via your smartphone, or voice activation.

Why we’re excited: Insomnia and health issues go hand in hand, whether it’s caused by chronic pain, medication side effects, or anxiety. For the chronically ill or disabled, then, any technology that can help sleep better is welcome. For people with fibromyalgia and rheumatoid arthritis, for example, the Ergomotion Contour Bed will counteract pressure that could cause further discomfort in sore bones, muscles and joints, or even prevent bedsores.

Foldimate

What it is: The Foldimate uses robotic technology to individually assess and fold your clothes as you feed them in. It has unlimited capacity, continuously folding while items are added. It’s not available on the public market yet, but it’s only a matter of time before this technology spreads.

Why we’re excited: With disability, it’s always the smallest things that can cause the most helplessness and frustration. Folding laundry might not seem like a big lift for people in good health, but it uses muscles and joints that can make the chore tortuous for people with chronic pain, and inaccessible for those with reduced mobility. And let’s face it: when your whole life can feel out-of-order, there’s psychological benefits to being able to wear freshly pressed and folded clothes.

 

Tikaway Connected Glasses

The Tikaway Connected Glasses can give housebound people eyes anywhere.

What it is: Tikaway allows users to share what they’re seeing, or view things remotely. Tikaway’s Connected Glasses can record what the wearer sees, or broadcast it live. Viewers can guide the wearer in real time, from wherever they might be.

Why we’re excited: This has huge potential for people with accessibility challenges, both professionally and personally. Chronically ill people working from home can attend critical on-site meetings, or go on vacations that they might otherwise not be able to take because of their health, addressing the isolation and loneliness that can often accompany illness and disability.

NeoMano Robot Glove

The Neomano Glove allows people with cerebral palsy or paralysis issues grip things they otherwise couldn’t.

What it is: This robotic glove enables people who have difficulty using their hands to firmly close their fingers, allowing them to more easily grip and pick things up. The portable glove is soft and fits over the user’s index, middle finger and thumb. A single press on a Bluetooth controller activates the titanium wires inside, closing the wearer’s hand. This simple motion means users can grip utensils, twist open bottles, turn pages and hold pens, and open doors.

Why we’re excitedThe glove could help people with multiple sclerosis, cerebral palsy, Lou Gehrig disease, or spinal cord injuries, or those recovering from a stroke. Being able to pick up and grip tools is something many of us take for granted, and is a vital part of feeling independent. The glove would mean users being able to get dressed, feed themselves, and take part in work that might otherwise be inaccessible.

AWARE Accessible Wayfinding App

The AWARE app allows people with visual impairment issues to interact with virtual beacons spread through the world.

What it is: The AWARE Accessible Wayfinding App from Sensible Innovations basically fills the world with signs that you hear, but don’t see. By using this app, these virtual beacons allow visually impaired people to more fully experience their surroundings, and navigate public spaces in realtime. And it’s not moonshot technology: the app integrates with existing beacon technology (like the technology Apple Stores use to alert you on your phone when it’s your turn at a Genius Bar) and use Bluetooth to provide audio-location information in places like city centers and on public transport.

Why we’re excited: We’re excited by anything that opens up the world for people with visual impairment and allows them to explore the world more easily. For example, when someone using the app nears a bus stop, they’re given the schedule and route information, guided onto the bus, and alerted as the bus approaches each new stop.

 

 

Disability Vision & Hearing Loss

The Treasure Hunters: Geocaching When You’re Disabled

Technology and a dose of true grit are helping these modern-day explorers take part in the global treasure hunt called geocaching.

Ed Manley gazed up the mountain. He could see the peak, where the treasure was stashed. And boy, did he want that treasure. But as a one-legged man with weight issues, with crutches and a body that complained whenever he moved, getting up that hill was going to be difficult.

A small container with a plastic-wrapped notebook doesn’t sound like much in the way of treasure. But for geocachers like Ed Manley, who live for the hunt, these caches–hidden under rocks, stashed in hollowed-out tree trunks or stuck to the metal base of a lamp post—are more valuable than pirate gold.

In geocaching, a small ‘cache’ of objects–containing a logbook and several small prizes wrapped in a waterproof container–is hidden somewhere in the real world. The GPS coordinates of the cache are then posted online for other geocachers to find, along with hints and clues on how to locate it when you’re in the area. Those who find the cache record their adventures in the logbook, swap out any of the items they want for prizes of similar value, and return the cache where they found it for other people to try to locate.

Because geocaches are often placed in remote or challenging places, it doesn’t sound like a hobby that would play well with disability or chronic illness. But the reality is different: for people like Ed Manley, geocaching can provide a literal lifeline.

A man with a beard in a powered wheelchair going geocaching with his daughter.

Ed Manley geocaching with his seven-year-old daughter.

From Suicide To Geocaching

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

In 2003, he fell down some stairs at work, breaking his neck. Manley already had health issues due to a car crash in 1979 that had hospitalized him for two years, but he accident spelled the end of his working life, and the beginning of a depression.

After years in hospital and 42 surgeries, his mobility was at an all-time low, and he’d developed an addiction to painkillers.

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

“I didn’t feel like I was of benefit to my family,” Manley remembers. ” I had become addicted and it nailed me to the couch, I couldn’t do nothing, I was useless.”

Based in Birmingham, Alabama, Manley decided to end his life on his boat.  “They’d find my boat floating, and that would be it.”

But as he was getting ready, the mailman dropped by. He had a package for Manley: a GPS device.

“I had ordered it using cigarette coupons and a few dollars, and I’d forgotten about it. I didn’t know a thing about a GPS.”

Interest piqued, Manley went into the house and sat down at his computer. One of the first hits  geocaching.com, where he discovered there was a geocache nearby. Curious, Manley followed the co-ordinates to a hole in the fence at his former old high school.

“I thought that’s pretty cool, and I decided not to kill myself.”

The Healing Power Of Hunting

The GPS device changed everything, Manley says. Although he was a long way from what he considered “healthy,” geocaching gave him something to do. Getting out of the house made him feel better.

A one-legged man on crutches wearing camo and hunting for geocaches in the woods.

Ed Manley going geocache hunting on his crutches back in the 2000s.

“It gave me some hope of recovery that I could have a life,” Manley explains.

Over the following year he hunted down increasingly difficult caches, building his emotional and physical health. Geocaching fed a strength Manley didn’t know he had. “I’d put my crutches down and crawl through mud on my butt.” He threw away the painkillers, and began to focus on a goal.

“I had one cache in mind,” Manley recalls. “It was on the top of the mountain. For a one-legged fat guy to get to the top of the mountain seemed like an impossibility. But I said if I can get up the top of that mountain and find that cache I will know I have recovered.”

It took him a year to build up the stamina to scale the mountain. “But I got up there and got that cache. I got up there and cried like a baby. I’d escaped the drugs, the depression, the feeling of uselessness.

“Geocaching saved my life.”

“Geocaching saved my life.”

Now 63, Manley is still geocaching. He mostly gets about in a powered wheelchair, which means mountains are off the cards.

“I don’t go after the hard ones as much anymore,” he says. “Over 10 years I proved I could get any cache. I have found caches in four countries and throughout 29 states. It’s been a blessing. It’s kept me sane.”

Manley still finds around two caches a day, gradually adding to the thousands of finds he’s racked up since that first find. And he has a new companion, his seven-year-old daughter, the child he has with the second wife he met through his hobby.

“My daughter loves it more than I do: she insists we go out, even in the snow.”

Geocaching When You’re Blind

For Day Al-Mohamed, geocaching is like hunting pirate’s treasure. “You have a secret map that takes you to a treasure. Especially some of the great big caches you find, like a big ammo box that someone has filled with things.”

A young, attractive Muslim-American woman with her guide dog.

Day Al-Mohamed’s visual impairment just makes her more determine to find elusive geocaches.

The public servant, who works as a senior advisor the US Department of Labor in Washington DC, began geocaching with friends. “They had just started and were super excited about it.” The excitement was contagious, and Al-Mohamed and her wife began hunting down caches on their own.

Visually impaired since birth, Al-Mohamed can make out shapes, and colors if she gets up close. But by pairing her iPhone’s voiceover function with the geocaching app, when she hunts down caches she’s able to take the lead with navigation.

With a mind that’s given to problem-solving, Al-Mohamed can tackle the most cryptic of clues. In fact, these often give her an edge.

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

While most cachers use the visual cues on the map, Al-Mohamed uses the compass in list mode, which guides her to the cache, inch by inch. “It’s kind of like getting hot or cold: Nine feet, eight, seven – okay we’re going well.”

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

Cache found, she lets her companion take over.

“When it comes to sticking hands into strange places I’m going to let somebody else do that.”

Although sometimes, there’s no avoiding the “ick” factor.

“There was one that someone had put on the side of a bike trail. It was a tree with a hollowed out base. My wife put her hand in and she let out a huge scream. And she said, ‘you stick your hand in there!’ I reached my hand in there and let out a scream, and pulled out a giant spider. Somebody had got a giant rubber spider, opened the abdomen in it and put a silver cylinder in there with the cache.”

Being visually impaired, she has to tread more carefully than others over the rough terrain geocachers often traverse. But working in the city has its upsides, and that’s the number of easy-picking caches right on her doorstep, which, due to her work schedule are often hunted at night, with a flashlight.

“In the city it’s more … how you get to it without someone else seeing you,” she says. “Secrecy becomes the more important thing almost than getting to it.”

Cheryl Rankine with members of the Australian Deaf Geocaching group.

The Universal Language of Geocaching

Cheryl Rankine has spent the last nine years geocaching her way around Australia, racking up almost 11,000 finds, or around three a day. Her hobby has sent her across four Australian states, and she regularly meets up with other deaf geocachers for events around the country.

Part of the 30-strong Australian group Deaf Geocaching, Rankine has ready-made friends in all corners of the country. But the language of geocaching is universal, she says, and when she comes across other geocachers she’ll pull out a pen and paper, or even mime to reach common ground.

Not one to shy away from a challenge, Rankine’s dedication to finding caches sees her scrambling through the Australian bush. Despite encountering snakes, and one instance where she was attacked by wasps, she’s determined to get to the most formidable caches, even if it involves climbing a tree.

“I always have a ladder in my car,” she says. “But I need more practice using ropes in trees.”

Rankine relies on visual clues and maps to navigate.

“Geocaching gives me an escape. I will never give up

“Walking in the bush, I keep my eyes open to watch everywhere. I can’t hear background [noise] but I manage to watch everywhere all the time. We even cache at night, with a good strong torch so we can see.”

However, with caching you never quite know what you’ll get, she says. Along with a ladder, she never leaves home without a walking stick, a magnet for accessing out-of-reach small metal boxes, pliers to open nuts, and a mirror. And even with all that prep, she still gets caught out.

“Sometimes, the clue could be song lyrics, and I’ll ask my daughter to listen to the song for me.”

She also contacts the cache owner if she needs a help, or calls the National Relay Service, an interpreting line for the deaf community.

The tenacious woman says she’ll geocache as long as possible.

“If I have many things on my plate at home, geocaching gives me an escape. I will never give up.”


Creative Commons Photo by Flickr user DM.

Disability Vision & Hearing Loss

Bird Box When You’re Blind

A better #birdboxchallenge would help sighted people understand the realities of visual impairment better.

It’s so sudden, I leap out of my skin.

I’m at the library, navigating to my favorite table with my Victor Reader Stream in hand. I find my chair, fold my cane, and start to pull my seat out, when all of a sudden, the chair moves on its own. I don’t even have time to think about what’s happening: I just lunge after where I think the chair should be. But in trying to prevent myself from falling, I crash into someone. .

“Oh my God,  I’m so sorry!” a masculine voice says. “Are you okay?”

We introduce ourselves. His name is Ryan. It turns out the chair broke. He pulls out another chair for me and helps me find it. He seems nice, maybe the future husband of my dreams. Then he says:

“I was just so shocked,” he blurts.

“Shocked about what?” I ask.

“I mean, you, being out, here. Navigating on your own, and stuff. That’s the scariest thing ever.”

He means because I’m blind. I’m silent.

“Navigating on your own, and stuff. That’s the scariest thing ever.”

He means because I’m blind.

“I don’t know if you’ve ever seen this movie called Bird Box on Netflix,” he says, then stammers awkwardly. “Not ‘seen’, I mean, heard…“

“I’ve seen it.” I reply.

“I just can’t imagine how you do it every day!” he gushes. I wish I could roll my eyes, but I can’t, so I let him finish. “I’ve been doing this challenge.“

“You mean the Bird Box Challenge?” I ask.

In the Bird Box Challenge, participants wear blindfolds and try to do everyday activities blind: iron their clothes, wash the dishes, cook dinner, drive their car. The challenge is named after the Netflix horror film in which the last remnants of humanity need to get around the world blindfolded so as not to be driven mad by sanity-shattering monsters. Frankly, the entire meme is representative of my very worst opinions about sighted people: that they are stupid about blindness, and so self-involved they can’t even spend twenty-seconds to Google how blind people get around the world.

“Yeah,” Ryan says. “After doing the challenge… I mean, I’m just so, like, whoa!”

Okay. So Ryan thinks he has some first-hand experience with blindness. So I decide to engage with him on it.

People put a blindfold on for twenty minutes, and think they suddenly have insight into how ‘hard’ life is when you’re blind.

“So what cane techniques did you learn?” I ask him. “Two-point touch? Shoreline? What about NVDA? Did you find that challenging?” I ask.

In response to this and a few other baseline questions about getting around the world when he’s blind, Ryan is silent.

And that’s my issue, in a nutshell, with the Bird Box Challenge. People put a blindfold on for twenty minutes, and think they suddenly have insight into how ‘hard’ life is when you’re blind. But they’re not going beyond that, and using the Challenge as a way to better understand the experience of blindness, or what blind people actually go through. They don’t learn about smart canes, or braille, or screen readers: they just stumble around in the dark for twenty minutes, and then make like they have some profound new understanding of what unique and tragic heroes we blind people are.

People like Ryan haven’t learned anything, and that frustrates me, because a better #birdboxchallenge could really help elevate the dialog around blind people, and make the world more accessible to the blind. For example, it could involve using a screen reader while blindfolded, or collaborating with a blind friend to take cane walking lessons.

A better #birdboxchallenge could really help elevate the dialog around blind people, and make the world more accessible to the blind.

I’d love it if a sighted person came up to me and said: “I tried using VoiceOver on my iPhone for a month and now have a better understanding of how you do things.” I’d love it if a sighted person used the Bird Box Challenge to watch an audio described movie blindfolded. I’d love it if a sighted person browsed the web with NVDA for a week, if only to grasp how severe my challenge is.

I don’t see anybody doing that, though. I wish I did. Instead, I see ignorant sighted people getting a thrill out of being in danger… and putting other people in danger in the process.

Disability Q&As

The Disabled Filmmaker Turned App Maker Trying To Map The Accessibility Of Every City

Jason DaSilva, who has multiple sclerosis, won't stop until the whole world is accessible to people with disabilities.

Several years ago, after being diagnosed with primary progressive multiple sclerosis, filmmaker Jason DaSilva gradually lost the ability to walk. Constrained to an electric scooter in New York City, he soon experienced what many mobile-impaired do, the frustration of urban inaccessibility. “I would be out with my friends going to some place and there’d be a stair or two. There was no way for me to get in, so my night would be over,” he recalls. But DaSilva had an idea: who better to know which places are accessible or not then the disabled themselves. If such knowledge was available on a single map, life would go a lot smoother.

In 2009, as the iPhone was becoming popular, DaSilva launched AXS Map (AXS as in “access”), an app which crowdsources accessibility information and lays it out on an interactive map powered by Google, which has supported the project with a grant. It has since become one of the most widely used disabled apps on the market. It is very much still growing. DaSilva, through his organization AXS Labs, hopes to include as many cities and places as possible. Right now, it is especially popular in New York, where DaSilva lives. Toronto, Vancouver, San Francisco and San Diego also boast lots of users, he says. The more users, the more comprehensive the app can be. “We’re getting a lot of information,” says DaSilva. “We have over 170,000 places rated.” But, he adds, they need more. “It’s not something that just we can do alone. We all have to work together.”

Prior to his diagnosis, DaSilva led a disability-free life. He was successful a filmmaker with two critically-acclaimed documentaries under his belt. Then one day, at age 25, while on a beach with his family, he fell and could not get back up. “I went from walking, being totally fine, to going into a scooter then into a wheelchair,” he says of the transition. Encouraged by his mother, DaSilva decided to document his tribulations which he then turned into a film, When I Walk. It debuted at the 2013 Sundance Film Festival. He is currently working on a companion film, When We Walk, which he hopes to release this year. DaSilva also regularly travels to speak about his story and AXS Maps. Recently, he was in Istanbul. He has also spoken at the United Nations Zero Project Conference in Vienna. We reached out to hear more about the app, his filmmaking and how technology is changing the way the disabled navigate the world.

Director Jason DaSilva at work.

Prior to his diagnosis, DaSilva led a disability-free life. Then one day, at age 25, while on a beach with his family, he fell and could not get back up.

What is AXS Labs?

It’s our non-profit, around since 2008. Its mission is to serve people with disabilities through media and technology. It’s focused on the app as well as my film projects. We’re also trying to do some things around changing national healthcare policy but we don’t want to take on too much. We’re growing, but not rapidly. We’re keeping stable. The team is small, just four people. But we have room to grow. We just need funding to make that happen.

What makes a place accessible or not?

When I conceived of the app, I originally was looking at if a place displayed accessibility signs, does it have a ramp or stairs, an accessible bathroom, etc. But the longer I’m in this field, it’s got to be across disabilities. It has to include the hearing impaired, the blind, the immobile, people with cognitive issues. There’s a lot to think about.

You mentioned that New York is ranked pretty highly in ter ms of disability-friendliness. Who decides such a ranking?

There’s a report that’s regularly released called “The Case for Inclusion”. It’s done by the United Cerebral Palsy Foundation. They ranked the states. That sounds very general but it’s based on their medicaid support services, not on their medicare, which is equalized everywhere as a federal program. Medicaid is a state program. At the end of the day, it’s about independent living for people with disabilities. I don’t think I know anyone who wants to be in a nursing home. But that’s the other option.

AXS Maps aims to crowdsource accessibility data from a team of dedicated users.

Are accessible businesses getting more disabled customers now as a result of AXS Maps?

I haven’t done the work to know but that would be something a research team could do, to see what the potential market impact is. I would like to do that at some point.

What sorts of responses from users have you received?

They say that they love the app, that it’s great. But it’s crowdsourced, which means you can review a place as a five then someone else can rate it as a three and it’ll do an overall rating as a four. The reason for that is I may be in a scooter that can’t go through doors or up a big long staircase or a big winding ramp but somebody else may be able to use a cane and get in fine. So they’d review it as a five where I’d say a three. Different equipment and different means.

What are some future plans for the app?

Multiple sclerosis is always changing and my vision has been getting worse over the years. Now it’s at the point where I can’t properly see my own app. Machine learning or artificial intelligence is really interesting to me now. That’s where I think it’s really going to help people with disabilities. I could say, “Hey AXS Maps, tell me what coffee shop near me is wheelchair accessible” and it would give me a return. I’ve got the data now to do that. It just needs to be programmed in that way.

Multiple sclerosis is always changing and my vision has been getting worse over the years. Now it’s at the point where I can’t properly see my own app.

Are there other similar apps now on the market?

There are. But we are definitely one of the first ones. We are the biggest one for North America. It’s a free app. Currently there’s no premium version. I thought it crucial that this app remain free for the people that need it. There could be ways of making a premium model but we just haven’t done it. I’ve been focusing on getting robust data. We also have just put out some awesome t-shirts.

What is your new film about?

It’s called When We Walk. It’s about me, my life and my legacy that will be passed on to my son. I have not been able to be in the same place as him because I’m in New York, which supports people with disabilities, while my son was taken to Texas, which is the lowest ranking state [for people with disabilities]. Because of that I cannot be with my son. The best way for him to know me is through a film. It’ll be out shortly. We’re just waiting for a good festival to pick it up.

Chronic Illness Disability Essays

In 2019, Choose To Be A Better Ally To The Chronically Ill & Disabled

Make this your New Year's Resolution. Here's how to stop being ableist in 2019.

Every time we open our mouths or put pen to paper, the words we use either affirm someone, or disenfranchise them; hurt them, or support them. Which is why, for New Year’s Eve, I’m imploring everyone I know to make the same resolution: try to be mindful of your own ableist tendencies, and start trying to change them.

As an invisibly disabled person, I experience ableism, or discrimination in the favor of able-bodied people,  on a daily basis. Most of the time, the people that perpetuate these issues are not bad people; in fact, many of them consider themselves allies. But because ableism is so deeply engrained in our culture, even people who want badly to help sometimes end up hurting or alienating people like me.

Think about it. How many times in your life have you said that someone was acting crazy, or needed to go back on their meds? How many times have you excused some momentary instance of clumsiness by saying: “Sorry to be such a spaz?”

All of these are examples of ableist language. Of course, most people don’t mean to insult people with mental or neuro-motor issues with these turns of phrase. But the intention doesn’t change the fact that there are real people out there–people you probably care about–who do struggle with such issues, secretly or not. People with health conditions and disabilities already have a harder time in life than most able-bodied people. Do you really want to make life even an iota harder for them… or, heck, for anyone?

If you’re a good person, you don’t. So here are some examples of the way ableism can sneak into our everyday interactions, and some tips on how to fight against it.

Language

Words reflect culture. This means that what we say is a microcosm of our society’s views of people, places, and things. There are many everyday idioms that are actually deeply rooted in ableism. Most of us now know that it isn’t cool to make fun of or belittle someone who is disabled mentally and/or physically, but our language hasn’t completely caught up.

We often fail to recognize the power that labels can hold, both positively and negatively, and when we use labels to describe others, that has a direct and sometimes very traumatic impact on their lived experience.  If we use ableist language, we limit the existence of another person and reduce them to something they are not. All of us, able-bodied and not, are multifaceted, and our language needs to reflect that.

All of us, able-bodied and not, are multifaceted, and our language needs to reflect that.

So where do you start? Well, there’s likely going to be some trial-and-error, but the good news is, no one expects you to get it right immediately, and most disabled people or people with health conditions will appreciate being asked questions about what words and terms to avoid.

The key skill you need to exercise is empathy. Ask yourself questions like: If you were someone who used a wheelchair, would it feel good to you if someone said you were “bound” to a tool that helps you navigate the world? If you were a person with a mental illness, would it feel good to you for someone to describe something as crazy or psycho? If you were someone with epilepsy, would you be okay with being reduced to that condition as an “epileptic?”

Taking a moment to consider disability in its human context makes it much easier to understand why ableist micro-agressions can be so painful, even when they are unintentional. All of us, no matter who we are, want to be seen for who we are, and using precise, compassionate language is key to meeting that goal.

Actions

Supporting people with disabilities and breaking down ableism isn’t just about what we say, it is also about what we do and think. And, if anything, this can be harder to address than what language we use, because it’s often not as convenient to act like a proactive ally to people with health conditions. But the old adage really is true: actions speaks louder than words. So if you really want to support people with health conditions and disabilities in your daily life, here are some examples of things you can be doing.

Don’t assume that everyone in the room is able-bodied — Disability can look all kinds of ways, and it doesn’t always appear the way that we have been taught to traditionally see it.  The disability community includes people with chronic illnesses (both mental and physical) and a whole range of impairments that you are unable to see with the naked eye. When I sit in disabled seating on the subway, I often find myself thinking that other passengers must be wondering why a healthy-looking 22 year old is sitting in the areas reserved for people with disabilities. Most people with invisible disabilities struggle with feeling validated in the community. So please do what you can to support us.
Support disability-accessible businesses, and make plans with accessibility in mind — The accessibility of a shop, venue, or restaurant literally determines who can come. That means that if you want to be less ableist, you should make a business’s accessibility in mind when choosing to give them your money, even if their lack of accessibility doesn’t otherwise effect you. And keep in mind, accessibility doesn’t just mean that there are wheelchair accessible entrances, although that is important. For example, if you were planning an event, it also means smaller, more subtle things like making sure that there is space for people to sit, that there are microphones to assist hearing-impaired people in attendance, and that there are plenty of breaks schedule for people who deal with fatigue or chronic pain. It is impossible to imagine every possible disability and plan for them, of course, but choosing to be mindful in even a few small ways of the way inaccessible businesses can shut disabled people out of an experience can reap big dividends.
If you’re a manager, allow employees flexibility in where and how they work — More than 133 million Americans--over 40 percent–deal with chronic conditions. An additional 40 million are considerd diabled. That means, if you’re a manager, there’s a good chance someone who works for you is dealing with medical issues. Be their ally. For those people, it can be a lifesaver to be able to work from home sometimes in order to get to doctors’ appointments or just to give their bodies time to rest. Employees should have the flexibility to work how and when they can, as long as that doesn’t impact their work.  Not only does working from home benefit the employee, but it also benefits the employer; employees that work from home have been shown to be more productive and more likely to stay with the company. Plus, telecommuting is more ecofriendly and more cost-effective.
Don’t reduce disabled people into stereotypes —  So many of the stories that we see about disabled people only focus on the sad parts or the inspirational parts of the disabled experience. Either people are held up as miserable people to feel sorry for (referred to in the chronic illness community as “tragedy porn”), or they are romanticized as saintly individuals struggling valiantly to go on (known similarly as “inspiration porn”). What our culture rarely views disability as is just another factor in the human experience, or disabled people as multifaceted human beings, just as hard to distill into a single quality as anyone else. What we need are representative narratives of disability, and the only way we’ll get those is by demanding them. So when you are selecting movies and books to watch, try to seek out narratives of disability that are multidimensional (this catolog complied by Vanderbilt’s Iris Center is a good place to start). And when possible, eek narratives created by disabled people; searching hashtags like #disabledartist or #disabledcreatives can help you find artists to follow (and support their work financially if you can)

Ableism isn’t going to disappear overnight, but if all of us commit to taking small actions to fully include people with disabilities—millions of Americans like me, who are your neighbor your coworkers and even your family members—we can begin to create more equity in this country.

Disability Q&As

The Man With A Digital Memory

After being hit by a car, Thomas Dixon lost the ability to form autobiographical memories. So he created Me.mory, an app to store them for him.

Eight years ago, while out on a jog near his parents’ house in the days before Christmas, Tom Dixon, a pre-med student at the University of Pennsylvania, was struck by a car. Waking up in the hospital, Dixon was told that he suffered a brain injury and would have permanent episodic memory loss. “I tell people it was a day I’ll never remember and a date I’ll never forget,” he says.

Dixon was told by his doctor that he would need a notepad to record details: what he had eaten during the day, who he had spoken to, what plans he had made. The idea struck him as archaic. “I said, ‘God no, I have a computer in my pocket. Let me do what I’ve been doing since late middle school, when I got my first cellphone.’” Dixon began augmenting his memory loss with his smartphone and computer. A few years ago, while working on a masters degree at Temple University in psychology, he decided to make an app that could do his remembering for him. He called it ME.mory.

The app, which has a few thousand beta users from Somalia to Spain and is due for public release in 2019, says Dixon, allows users to record a “digital memory,” each one searchable and organized by date. Users can even attach emotions to the notes, to help them recall the memories better (it is currently being retooled and will be available to new users by the second quarter of 2019). “Who are we but our past moments?” Dixon says. “We like to think we are carefree at any given moment but we need a sense of direction, a sense of purpose.”

Traumatic brain injuries (TBI) constitute a major cause of disability and death in the U.S. It is thought that 1.7 million Americans experience TBI annually and about 2% of the U.S. population live with some kind of TBI-related disability. Auto accidents are the third leading cause of TBI among all age groups, according to the Centers for Disease Control and Prevention. Due to the sheer scope of TBI cases, it has been referred to as the “silent epidemic.” Though awareness of TBIs have increased over the years, with public attention focused on football-related concussions and war veteran head injuries, it is still relatively poorly understood by medicine. We caught up with Dixon, 34, to hear about his experiences living with a TBI-related disability and how, through embracing technology, he has been able to adapt and thrive.

Dixon was told by his doctor that he would need a notepad to record details… The idea struck him as archaic. “I said, ‘God no, I have a computer in my pocket.’”

What was your rehabilitation experience like following your accident?

I was in an ICU for a week and a half. I had intensive inpatient rehabilitation through Moss Rehab’s Traumatic Brain Injury Program. They’re famous for it. After a bit of time with them I went into outpatient treatment. I qualified for funding for extended services a year and a half later, also through Moss. Speech therapy, occupational therapy, physical therapy. Speech therapy relates more to how you think through issues and problems, how you would tackle something confidently, how you process thoughts. Occupational therapy is more about proving you can “do things”: get from one location to another, cook a meal by yourself, use your bank account, etc. It all made a big difference. They helped me change my career focus from psychiatry to educational psychology. I got my masters in that in 2014, entirely after my injury.

Thomas Dixon.

What was your memory like during this time?

I had pretty severe memory loss at the beginning, much more than now. There is a recovery window where you regain a bit of functioning. They put me under with medications to give my brain a chance to heal. Initially, when people would explain what had happened to me, all I said was, “Wow.” There was a huge initial period where my family had to be convinced that how I was proceeding was typical for someone with an injury like mine. I had a notepad by my bed that said, “You were hit by a car. You’re in recovery. Your parents will be here at 4 o’clock.” After that I went through the rehab stuff.

Initially, when people would explain what had happened to me, all I said was, “Wow.”

What is the extent of your memory loss now?

Let me ask you: what did you eat for lunch yesterday?

Shrimp ceviche.

On my own, I can’t tell you. That gives you some extent of my episodic memory loss.

No matter how hard you try?

It’s definitely not a matter of effort. This is where we need to be mindful of what is the overlap between memory and logic. If I start telling you I did not eat this thing, that would be using logic because I know the things I don’t eat typically. The sense of who I am has remained. Also if I know I was in this area of the city, I probably wasn’t eating, say, Chinese food. But no matter how hard I try, I don’t know for sure. Even for last night’s dinner I don’t know.

A look at Me.mory, Dixon’s upcoming app for people with traumatic brain injuries and memory loss.

Is your brain still in recovery?

The window, they say, is six months to two years for quote-unquote recovery. It’s been a long time since then, getting closer to a decade now. Recovery is done. The reason I say quote-unquote is because I take a strong opinion–and many others in the brain injury community do as well–that there is no such thing as recovery. There is a period where you do regain some functioning. But I’ve lost this very huge part of my organic memory ability. It’s perhaps even “invisible disability” discrimination to talk about brain injury with recovery; if I lost my arm would people say to me, “You’ve recovered?” No. They would say I’ve adapted and learned strategies. Why do we say, because it’s an invisible disability, that it’s recovery rather than adaptation?

For years, I was using Twitter. I had a private account. I tweeted for myself to myself; I had no followers. That was my memory, a Twitter memory.

What has your adaptation process been like?

For years, I was using Twitter. I had a private account. I tweeted for myself to myself; I had no followers. That was my memory, a Twitter memory. If you lose your phone you don’t lose your Twitter account. But it was hard to search my own memories. I would have to download my Twitter archive onto a laptop and then I would have to search. That’s something I needed with ME.mory, that functionality to be able to search my memory on the go. I was doing the Twitter thing for years. Even into graduate school. I got into Temple for my masters in 2012. I was even doing it when I went into this idea incubator they had there. I walked in and said, “I have an idea for an app.” They put me in touch with the developer.

What’s the difference between your app and, say, the Notes app on my Iphone?

What do this robot and Thomas Dixon have in common? They both store their memories digitally.

My entire ME.mory is searched when I use the search feature, then it gives all the search words I’m looking for in reverse order, with the most recent at the top. It’ll automatically highlight for me in the entry where the word is. ME.mory will give statistics like, “Hey, you mention coffee more in the morning than the afternoon. I guess you drink coffee more in the morning.” Or, “Look you haven’t seen this friend much this year compared to last.” Things like that give me all sorts of data that I can make inferences from. The graphs let me see if changes are happening overtime. I also get graphs related to what time of the day I’ve mentioned something, split into four time periods.

How many times a day do you post?

Sometimes I don’t have much going on so there’s nothing to note or there’s too much going on so I have no time to. Looking at my app right now, I have an average from the last five days of three posts per day. I haven’t made any today. Yesterday I made six, partly because I was seeing old friends. Sometimes I hand people my phone and ask them to write things in my ME.mory. It’s been cool to show them years later what they wrote, then we talk about that experience. Yesterday my friend wrote about the night we were having, playing retro video games.

When you tell people you can’t remember your life, they almost always say, “I’m sorry.” Then you tell them you have a digital memory and they almost always say, “That’s awesome.”

What are some of your future plans?

There’s a book I’ve wanted to publish. It’s already written and twice edited. My experience with my disability and inventing ME.mory is really captured in the title I want to use: I’m Sorry, That’s Awesome. When you tell people you can’t remember your life, they almost always say, “I’m sorry.” Then you tell them you have a digital memory and they almost always say, “That’s awesome.” These are the actual words. I heard them a few times last night and will hear them tonight at my high school reunion.

How have users responded to the app?

When you release something people decide how they’re going to use it. You can tell them how but people just end up running with it, like what I did with Twitter. We’re seeing the same with ME.mory. Parents are recording their children’s life; caretakers are recording lives of the elderly; patients are using it as an injury log to bring up with their doctor later, which I do actually. I take seizure medication and in the doctor’s office I will pull up all the entries with the word seizure to show the doctor. I don’t need to prepare any notes before the appointment.

People act like memory loss is only for one small minority but it’s all of us… We all have severe memory loss.

How do you think about memory and memory loss?

We all have severe memory loss. If I ask you what you had today last year for lunch you don’t know. You forget the overwhelming majority of your life. People act like memory loss is only for one small minority but it’s all of us. We’re already making tech reminders all the time. I’ve just readjusted how we use those technologies for my own purposes. I’ll make calendar alerts for stuff that aren’t appointments, stuff that I want to keep in mind generally as time passes. I’ll email myself things to do that are not urgent. I rely more heavily on texts. But I’ll also get on a call like this then update my memory later about the call. Those are a number of workarounds that a lot of people are doing some version of already. I think of memory loss as a universal issue.

Disability Mental Health Roundups

5 TV Shows That Get Disability Right

From Stranger Things to Keeping Up With The Kardashians, here's five shows that refuse to look at chronic illness and disability through an able-bodied lens.

When it comes to representations of disability and chronic illness in popular culture, it’s easy to be frustrated. Anyone that knows me will attest that I often lament the lack of realistic depictions of disability on TV, which is all too glaringly obvious when you spend the majority of your life propped up in bed with your laptop, like me. (I could probably get up: I just choose Netflix).

Any disabled or sick person will tell you that seeing an inaccurate depiction of the condition they’re toxically glued to for the rest of their life hurts. For instance, I found ballet show Flesh & Bone gripping until one of the dancers discovered she had MS, and her diagnosis was as hamfisted as a Joss Whedon rewrite.

But all is not lost. There are shows that are getting accurate representation right. These television shows refused to be lazy, and instead dared to get disability right… in some cases, even daring to cast disabled actors in disabled roles (Eddie Redmayne, take a seat).

If you want to support the change you’d like to see in television, here are five television shows that get disability right.

Breaking Bad

A man with cerebral palsy talks to a bald man in glasses in a living room with plaid curtains in the background.

RJ Mitte as Walt Junior in Breaking Bad.

RJ Mitte’s depiction of drug lord Walter White’s son remains one of the strongest examples of a disabled actor being cast in a role which doesn’t focus on his disability. That’s important, because the part could’ve so easily gone to an able-bodied, Mickey Mouse Club reject. Living with cerebral palsy in real life, Mitte’s character had the condition, but it didn’t have him. Walter White Jr. was never defined by his disability, and is basic proof that just as Shonda Rhimes employs colorblind casting on all of her shows, an actor’s physical or mental impairments shouldn’t limit their chance to audition for any part. Plus, Walter’s dad, as a person with cancer who’s undergoing aggressive therapies, is a literal disabled badass, and I invite you to fight me.

American Horror Story

Jamie Brewer, who has Down Syndrome, is one of the core cast members of American Horror Story.

Actor Sarah Paulson recently said of American Horror Story co-creator Ryan Murphy (via Variety): “His unfaltering commitment to telling the stories of women is noteworthy. This is a man who wants to tell the stories of women over 40.” And the same is true when it comes to casting disabled actors in unexpected roles. One such disabled actor is Jamie Brewer, a woman with Down Syndrome who’s played clairvoyant witches, cult members, and creepy dolls, and continues to recur on the series even now. Plus, Inside Edition recently called Brewer the “First Woman With Down Syndrome to Star in Off-Broadway Play,” and if that’s true, it’s no mean feat that the prolific performer is blazing a trail and hopefully, instigating a major change.

You’re the Worst

Gretchen Cutler of You’re The Worst struggled with depression.

Gretchen Cutler could’ve been a cookie cutter anti-rom-com heroine, breezing through her character arc on too much booze, sex, and witty repartee. Instead, when You’re the Worst returned for a second season, Gretchen revealed herself to have the sort of show-stopping depression that ends lives, and destroys relationships. For anyone familiar with clinical depression, breakout sitcom You’re the Worst became agonizing to watch because its representation was so damn close. When viewed next to fellow character Edgar Quintero’s PTSD, You’re the Worst significantly defined itself as the sitcom that wouldn’t sugarcoat mental health even for a second.

Keeping Up With the Kardashians

Kim Kardashian struggled with anxiety on Keeping Up With The Kardashians after being robbed at gun point.

Love them or hate them, the Kardashians are honest when it comes to the truly negative and difficult-to-handle aspects of life. And when Kim Kardashian West was robbed at gunpoint in Paris in 2016, she developed a serious case of anxiety as a result, and viewers were given glimpses of her agonizing reality with the disabling condition. And despite mainly being off-camera these days, Rob Kardashian’s diagnosis with diabetes punctuated his own reality series, Rob & Chyna. Whether or not you agree with the Kardashian brother’s approach to handling his chronic condition, his denial and refusal to face up to the realities of the illness were endlessly relatable for any of us who have ever struggled to come to terms with our own diagnoses.

Stranger Things

Gaten Matarazzo of the Netflix phenomenon Stranger Things.

Gaten Matarazzo finally got his big break when the creators of Stranger Things decided to write the actor’s disability—cleidocranial dysplasia, a condition which affects the development of a person’s bones and teethinto the script. In a recent interview, Matarazzo revealed that he’d lost out on several auditions in the past, “Because they couldn’t write in a disability into the show because they had already written the script” (via HuffPost). However, as the casting process for Stranger Things proves, there’s literally zero reason that any role should be defined as able-bodied in the character description. It just shouldn’t, and doesn’t need to, happen anymore.

What These Shows All Get Right

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens. Instead, each depiction, regardless of genre, explores the highs, lows, and mundane details of disability, chronic illness, or mental health. Even more important is the fact that actual, real life, bonafide disabled people were cast in roles that were rewritten completely or simply created for them. Rather than farming out these roles to able-bodied actors, casting directors, creators, and show-runners took the time to consider disability. And in the cases of Matarazzo, Brewer, and Mitte, character arcs were altered for the better thanks to the actors portraying them.

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens.

Whether there’s strictly a “right” way to handle disability in the arts is questionable, but thanks to the growing number of crucially truthful roles for disabled and sick performers, the television landscape is getting more and more relatable. For instance, the first show by and starring Maysoon Zayid, co-founder of New York’s Arab-American Comedy Festival, is called Can-Can and is currently being developed at ABC. The autobiographical sitcom will (per Variety) follow a “Muslim woman who has Cerebral Palsy (Zayid), as she struggles to find love, the right career, and discover who she is separate of her opinionated Muslim parents,” which sounds super promising, and a little overdue.

It’s time that the stories of chronically ill and disabled human beings weren’t erased, glossed over, or summarized in a “case of the week” episode on a generic medical show. Sick people are tired as it is without having to fend off another inaccurate, depressing, or infuriating depiction of their well-worn diagnosis. And thanks to the television shows above, that’s slowly starting to change.