Disability

How ‘There She Goes’ Creator Shaun Pye Adapted Life As A Special Needs Parent To TV

Pye's daughter Joey has a rare undiagnosed chromosomal disorder, which served as a basis for the new BBC dramedy.

You might know Shaun Pye if you’ve ever seen Extras, where the English actor, writer, and comedian plays Greg Lindley-Jones, the smug actor foil to Ricky Gervais’s Andy Milman. Nowhere near as odious in real life, the affable Pye also co-created with David Cross The Increasingly Poor Decisions of Todd Margaret, a black comedy currently on Netflix and other streaming platforms.

Pye’s latest project is very different, though. His new BBC series There She Goes stars David Tennant, and  is based on his own real-life experiences raising his daughter Joey, who was born with a rare, undiagnosed chromosomal disorder.

“For years, I’d shared funny and poignant stories about my daughter, Joey with friends,” Pye says.  “Over time my friends would say they made them laugh and cry and think … and that these were stories that they didn’t really encounter in mainstream culture. “We realized we were in a unique position to tell a story that the vast majority would have no experience of.”

Now streaming in America on Britbox, Folks spoke with Pye about the series, how it differs from his real-life experiences raising a daughter with a learning disability, and how and why he chose to share his family’s story.

Actor Shaun Pye, a dark-haired actor in thick glasses sitting in front of two MacBook laptops.
Shaun Pye, creator and writer of There She Goes.

What was it like bringing There She Goes to the screen?

I’ve written many TV shows but this was obviously the most daunting at the outset. As it turned out, it was one of the easiest to make. As it is based so much in reality, writing wasn’t as much a creative process as a remembering process. Whereas in other projects there were so many criteria for whether a character or plot was right; with There She Goes the only criteria was “does this feel true?” It’s quite liberating really.

Writing [There She Goes] wasn’t as much a creative process as a remembering process.

Turning the script into the show was also a joy. There’s so much goodwill towards this from the production company (Merman and especially producer Clelia Mountford), the very supportive BBC and the cast and crew. It sounds like something everyone says but honestly, I couldn’t have worked with a better bunch of people.

What are the major ways the show differs from your real-life experience? Why did you make those changes?

We tried to make the show as honest as possible. So the central four characters are incredibly close to my family. Simon is the dad, Emily is the mom, Rosie is Joey, and Ben plays Rosie’s older brother. The further we radiated out from these characters the more artistic licence we took, so the grandparents and neighbor are more “based on” true characters.

The stories are all rooted in reality, although to fit them into 30 minute episodes we did play with chronology, put true stories together that didn’t necessarily happen in the same time frame.

A little girl pouring milk over herself in the kitchen.
Many of Joey’s real-life struggles influenced There She Goes.

Was it hard going public with the fact that you have a special needs kid? Why or why not?

It wasn’t a difficult decision to go public with Joey having special needs as we’ve never hidden it; it’s very hard to hide it! To us, she’s just Joey and her condition is as normal as having any other child.

What did worry me was how the show would be received by parents and families in a similar position. It’s very much our story and never pretends to tell a more universal story of what it’s like to have a child or sibling with other special needs. But we felt a great responsibility all the same. We didn’t need to worry; the response from these parents and siblings was overwhelmingly supportive and without doubt the aspect of the show I am proudest of.

What did worry me was how the show would be received by parents and families in a similar position.

What is it like to be the parent of someone who doesn’t have a diagnosis?

Joey is in the 100,000 Genomes project–a UK wide genetics program–so we may get a diagnosis.

Early on the lack of any knowledge about how Joey might develop caused a lot of stress for me. It’s hard to look forward when there’s no accepted map of what’s “normal” for her.

But now, while we’re obviously intrigued (and there could be hidden physical issues that a diagnosis could highlight), we don’t really feel a desperate need for a diagnosis. Whatever she has is almost certainly so rare that there’s probably not a great deal of case studies to shed any light. And even if there was, there’s obviously no treatment; so it wouldn’t change our day-to-day lives.

Do you have any advice for other parents who might have undiagnosable children or children with rare “orphan” diseases?

I never really wanted to give advice to any other parents–just to tell our story as honestly as possible and hope other people could take what they wanted from the show.

Now it’s aired in the UK and had the response it’s got I’ve changed my attitude slightly. So many people got in touch to say: “Your program made me realize I wasn’t alone, that it’s okay to find all this stressful; it’s ok not to be perfect.” It was very emotional for me to be told that.

So that’s the advice I’d pass on. However difficult it feels–you’re not alone.

However difficult it feels–you’re not alone.

What are some of the biggest challenges you face as a parent of a special needs kid? Are there any that you feel are “unique” to your career as an actor and comedian?

Wow. To be honest it becomes your ‘normal.’ We don’t see challenges–it’s just Joey. But I guess the constant vigilance, the constant worry that she’ll hurt herself, the endless cleaning of wee and poo from beds, floors, sofas. All this limits what you can do away from the relative safety of the house–so going out, going on holiday are harder things to organize than for other families I’d imagine.

Communication is another challenge. Trying to make her understand and vice versa is a long long process. Joey takes a hugely disproportionate amount of our time compared to our son. Making sure to make him feel special is a knock on effect of that.

Comedian Shaun Pye wearing thick glasses standing next to his 12-year-old daughter, Joey, who also has large glasses.
Shaun Pye and his daughter, Joey.

In the series, when you’re out to dinner or even walking in the street, strangers and neighbors don’t know how to react or they respond negatively when they see Rosie “misbehave.”  How do you and your wife handle that in real life?

I would say the vast majority of people are very positive towards Joey. There are exceptions, but actually having Joey has restored some of my faith in human nature.

The biggest problem, which we feature heavily in the show, is that people just don’t know how to act round her, sometimes they’re just scared of saying the wrong thing.

I’ve come to the conclusion that it’s fine to be like that. And that anyone who does try to help or interact with her, by that very act, is doing a wonderful thing. So if they say or do the “wrong” thing, who cares? They’ve gone out of their way to treat Joey as a little child, not someone different.

What do you hope people take away from the show?

I hope people laugh at the funny bits and are moved by the sadder bits. I hope it opens a window to a world that people may not have seen before. I hope it promotes a little more understanding of learning disability.

I hope it opens a window to a world that people may not have seen before.

And for parents and siblings in a similar position, I hope it lets them know they’re not alone. I hope it lets them know that Sarah and I went through something similar and it was horrible. And we made mistakes. And everything wasn’t neat and tidy; it was messy and scary.

And I hope they see in the modern timeline that, for us, everything was okay. And that Joey/Rosie is both loving and very loved.

Has making this show been cathartic or helpful in any way for your family?

Yes. It’s made us confront some unpleasant moments from our past. Without the show I wonder if we would ever have done that.

And we had a laugh writing it! It’s not all darkness and gloom. It made us as a family remember all the mad, crazy, silly moments and preserve them in a TV show–like a moving photo album!

Disability

By Wheel, By Stick, By Crutch: Making The World’s Wonders Accessible To All

Everyone will eventually be disabled, which is why Wheel The World is making parks and trails around the world accessible to all.

One day in 2017, while finishing business school at UC Berkeley, Alvaro Silberstein was chatting with his longtime friend Camilo Navarro. Camilo suggested that the two take a 5-day trek through the Torres del Paine National Park in Chile, their home country.

It was a trek that Alvaro–who has used a wheelchair since he was 18, due to a spinal cord injury–had always wanted to make. “It sounded amazing but also maybe impossible,” he remembers.

To assess the challenge, they called the National Park authorities and local travel services asking about wheelchair accessibility. But no one could tell them anything. If it had been done before in a wheelchair, no one could tell them about it. So, Camilo and Alvaro decided that they would not just hike the trail, they would blaze it– at least from a wheelchair accessibility perspective.

Alvero Silverstein, co-founder and CEO of Wheel The World, smiles at the camera. He is wearing a baseball cap, is unshaven, and is wearing a brown jacket with an orange collar.

Alvaro Silberstein, co-founder and CEO of Wheel The World.

A mere 26 months later, and Alvaro and Camilo run Wheel the World, which offers tours in the US, Peru, Tanzania, Brazil, Costa Rica, Chile, and Mexico that are accessible to people with a growing range of disabilities. They plan to “open” ten more destinations this year, and hope to eventually offer tours to thousands of locations. Their goal is to enable millions of people with disabilities to “explore the world without limits” by visiting national parks, heritage sites, and other destinations that have been historically tricky or impossible for disabled people to enjoy.

But that’s not all. Not only does Wheel the World offer packages for disabled tourists, they also train local services in accessibility. They also partner with different sponsors for specialized equipment like adaptive bikes and wheelchairs, which they leave on site for future use by anyone who needs it.

Folks caught up with Alvaro Silberstein to talk about how Wheel the World works, and where it’s headed.

How did the original trip turn into you and Camilo creating a company together?

At the time, I was working for a startup in the Bay Area that developed futuristic wheelchairs–so I knew about the new technology and new equipment being created. I found a special hiking wheelchair but it cost $8,000 and that was prohibitive. Even the shippings costs to rent it would have been too much. So we decided to turn the trip into a project with the objective of making this specific trek accessible for wheelchairs. We decided that we would leave the equipment there and train local travel services to repeat the trek for others. We funded the project on Kickstarter.

It was such a cool feeling to be in a place that, since my injury, I thought was no longer for me.

I always loved being in nature and traveling but there was a lot that I thought was just impossible for so long. It was crazy! It was such a cool feeling to be in a place that, since my injury, I thought was no longer for me. I think it was also really cool for the operators, tour guides, and travel services because they were all super excited to see someone in a wheelchair doing it. We all figured out how to make the transport and accommodations accessible together as we went.

We also filmed the entire adventure and made a video that went viral. We started to receive a lot of requests from people with disabilities and people that wanted to help their friends or family members do the same thing. We started organizing the trip for other people, just because we wanted to make an impact around our initial idea. But then we got really excited and we thought, “why don’t we replicate this in other places?” We were able to get sponsors for the second trip which was to Easter Island. They provided special wheelchairs for volcanoes, adaptive bikes, and even adaptive scuba equipment. It went from there.

We started off trailblazing, but we realized there is a lot of accessible travel out there and that’s when we started also partnering with local accessible businesses and services.

Two friends helping a disabled man hike on a beautiful trail at sunset.

There’s no where that isn’t accessible when you have the right equipment and friends. Which is where Wheel the World comes in.

From what I understand, part of making these locations accessible is that you get the special equipment sponsored and then leave it with local services. So can anyone who visits there use them?

Adaptive equipment is super expensive in general. Most people aren’t going to buy an $8,000 wheelchair to use once a year. In the US people are used to equipment being funded by insurance or medicare but that’s not the case in other places. So we leave the equipment in the locations and train local services to manage and use the equipment. Depending on the equipment and the location, people might need to purchase services to use them, but that’s how we protect the equipment handle safety concerns. We want to make sure people know how to use it. So far, equipment we’ve left in different places has been used over 500 times.

Most people aren’t going to buy an $8,000 wheelchair to use once a year… So we leave the equipment in the locations and train local services to manage and use the equipment.

How do the special chairs work for hiking?

The hiking chair works in a team of three people. It’s designed so that the pushing motion of the person behind you is very natural. The person in front of you has a harness where a backpack would go. Those two people walk in a synchronized way. For the person in the wheelchair, or at least for me, it can take a little get used to. I was used to pushing myself. But at the end of the day it’s impossible to get to these places otherwise, and I think that’s something that other people on our trips have realized too. Once you’re used to it, it’s actually a fun group activity. It’s teamwork. You have to communicate all the time.

A smiling disabled woman in a custom-built wheelchair for getting into the wall with scuba diving. The chair has three big yellow wheels and floats. She smiles at the camera wearing full scuba gear, with the beach behind her.

Wheel the World wants to make any adventure you can imagine accessible, like scuba diving.

What about the special bikes? Are there different kinds for different disabilities?

Yes! Once we went to the Atacama Desert with a blind person to understand their experience. We went with a tandem bike for him, but in the middle of the trip, it got a flat. I was using a bike that I crank with my hands–it’s great for me. We have another bike called a recumbent that’s meant for people with balance or back problems where you lean back and crank with your legs. We ended up combining those bikes so that I was the eyes, and he was the legs. He was a lot stronger than me, so we could go a lot faster. Now we use this type of bike for bike trips with blind people.

What have been the most challenging trips to design?

Definitely the Inca Trail! I went to Cusco when I was 17, right before my accident. I took the train to Machu Picchu but there was a protest on the train, so we only got to stay for about half an hour. I was sad, but I didn’t care that much because I thought, “of course I’ll come back here and I’ll do the Inca Trail.” After my accident, I just thought I never would. But since the project started, I’d wanted to try it. We underestimated how hard it would be. It was intense, and even a little bit risky. That’s why we’re not offering it as a tour. That was the first time we realized that something was just a little bit too much. We’re still offering tours of Machu Picchu, just not the trail.

A disabled woman cycles in tandem with a partner on a leafy trail, with another bicyclist following behind.

Tandem cycling is one of the many options Wheel the World offers.

What kind of disabilities do you design trips for?

We started for an obvious reason with wheelchair users. Now we work with many types of people that have various types of disabilities like blindness, Cerebral Palsy, and cognitive disabilities. But really, anyone up for a cool adventure– it doesn’t matter if we already offer it– can reach out to us! We know some disabilities more than others but we’re open to learn how to accommodate anyone. We have a physical therapist on the team that looks at special requirements to figure out if we can address them.

People think of disability as something separate from themselves, but actually, disability is the only minority group to which everyone will eventually belong.

We want to work more with seniors. I’ve been trying to convince my grandma to come trek with me in Torres del Paine. Our communications are very…millennial. But, we’re realizing that there are so many seniors that can walk, just not that much, that would benefit from our services. People think of disability as something separate from themselves, but actually, disability is the only minority group to which everyone will eventually belong.

Disability

This Hockey Team For Disabled Kids Is The Coolest One Around

When Isaiah Granet was 12, he started a hockey team for kids with developmental disabilities. 6 years later, the San Diego Chill is still going strong.

Isaiah Granet has always loved hockey. The team environment, the competitiveness, the creativity of the game. He believes everyone should have the opportunity to play. Unfortunately, few hockey programs for children with disabilities exist.

That’s why six years ago, he started San Diego Chill, a nonprofit that teaches children with developmental disabilities how to skate and play ice hockey.

He did so after meeting Adam, a young hockey fan with Down Syndrome. Adam wanted to play, but couldn’t because no teams allowed children with developmental disabilities. “Seeing the pure love that Adam had for ice hockey, reminded me of the same passion I feel for the game,” Granet says. “Given that connection, I knew I couldn’t sit by and watch hockey stay out of reach for him.”

The most amazing thing? Granet did this when he was 12. He’s 18 now.

Folks spoke to Granet about his love for the game, how he started San Diego Chill, and how kids benefit.

Isaiah Granet with a member of the San Diego Chill.

How did San Diego Chill start?

I approached the local rink owner about starting a pilot program for a special needs hockey team. The owner offered us free ice time. Hockey equipment, however, is expensive. I contacted law firms to ask for donations. It was one of the most daunting tasks I faced. Being only 12, I thought I would be laughed at, and truthfully I was. Out of the dozens of emails and calls, one law firm took me seriously. Paul Hastings LLP not only helped me set up the team, they did it pro bono. Receiving help from such a large law firm was incredibly empowering and gave me the confidence to move forward. Without the generosity of Paul Hastings and the wonderful lawyers that we have worked with, namely Terry O’Brian, the Chill would not exist today.

How expensive is it to play hockey?

On average, it costs between $200 and $300 to equip each player. We don’t charge for equipment. Each player receives a brand new helmet to ensure absolute safety on the ice. While we do receive some equipment donations, we usually have to fundraise. No player will ever see a bill for their equipment; there are no barriers for anybody who wants to learn to play.

No player will ever see a bill for their equipment; there are no barriers for anybody who wants to learn to play.

How do you fundraise?

We’ve received several grants that have helped offset the costs of the program, and we mostly rely on the generosity of the community. People across San Diego and across the country, have stepped up to help support this program. That said, raising the funds each season is our biggest worry. We’ve raised more than $130,000 since starting The Chill. I’m also a recipient of the Baron Prize, which awards grants to students who make positive impacts in their communities.

Who plays and who coaches?

It’s open to children ages 7 to 13. Each Sunday during the school year, we have up to 40 players and 50 mentor coaches. Most of our volunteer coaches come once and become hooked. They fall in love with the team and bond with the players. Nearly all of our coaches are teenagers, aged 13-18. They willingly and enthusiastically give up part of their Sunday to help give back to their community. It’s truly amazing to see the connections and bonds that grow from player-coach relationships. It’s life changing on both ends.

As time goes on every coach gets to see the development of the player they have been working with for years, and the impact their commitment has made. We have also started an education program for the coaches, inviting doctors, parents, and specialists to come speak and educate the coaches on developmental disabilities.

How has San Diego Chill helped the players?

There are many stories from the players whose parents never thought they would walk let alone skate to the players who have met their best friends on the team. Another story happened after practice. The coaches usually go out for lunch together. One coach invited a player who was 13. We were 14 and 15 at the time.

Later that day, I received a call from his mom in tears telling me that her son had come home and told her that it was the “best day ever.” Just being able to enjoy lunch with kids close in age was enough to bring him and his mother to tears. It was an hour of our time that didn’t seem remarkable to us, but to this player it was enough for him to call it the “best day ever.”

Isaiah Granet and the players of San Diego Chill.

And about once or twice a year, we do an event night with the San Diego Gulls. We usually are able to offer free tickets or extremely discounted prices to families. These nights are about building a community through the team, encouraging the formation of relationships among parents and players outside of hockey. After one of these nights I had a parent come up to me and thank me for a wonderful night, saying that his family had loved being able to go to a pro sporting event. They, as a family, had never been able to attend any other sporting event before. To be able to go out and enjoy a night like a typical family meant the world to their entire family. There are so many things that we all take for granted, and seeing how impactful small events like these can be never fails to surprise me.

There are so many things that we all take for granted, and seeing how impactful small events like these can be never fails to surprise me.

What are your plans going forward?

I’m currently attending Washington University in St. Louis. While, I’m still very much involved with the team, I’ve expanded The Chill’s board, and delegated roles to other volunteers. We are currently working on a long term plan for The Chill to ensure its continued growth and existence.

And for the Chill to continue functioning we always need support from the community. There is no shortage of ways to contribute; hockey abilities are not a prerequisite!

Disability

The Disabled Dog Whisperer Finding Service Dogs For Kids In Need

With Sunny, a German/Belgian shepherd mix by her side, Tabitha Bell is helping kids who can't afford service dogs find a companion.

Diagnosed in fourth grade with a debilitating form of Muscular Dystrophy called Charcot Marie Tooth disease, Tabitha Bell endured six surgeries and still struggled to walk. She fell often and was unable to get up by herself. She needed to hold onto someone to get around. That all changed when Sunny, a German/Belgian shepherd mix came into her life. She was 12.

Since Sunny kept her steady and made her stronger, Tabitha vowed to help others. She started Pawsitive Pawsibilities, a nonprofit that provides service dogs, free-of-charge, to people with disabilities. In the past six years, she’s raised $130,000 to place nine dogs that are helping children and adults conquer the challenges of paralysis, Cerebral Palsy, and PTSD.

“The increased mobility allowed me to be more independent and to walk on my own,” she said.

Life Before Sunny

Before Sunny came along, things were very different for Tabitha.

“I was weak and remember receiving the Presidential Fitness Award in second grade because I tried so hard,” she said. “Some students and parents objected, but my physical education teacher told my parents I tried. He believed I’d never be able to do a sit up. He was right. My mom hired personal trainers to help me gain strength and balance. By fourth grade, I was falling down at school several times a day and could not step on a curb without assistance. I had great friends and went everywhere holding the hand or arm of one of my friends.”

“I fell in love with him when we first met… I knew he was going to change my life.”

Sunny was a little over two when he came to live with Tabitha. “I fell in love with him when we first met,” she said. “I remember the day I stepped off a curb all by myself. It seems like a simple thing for most people; for me, just walking independently, let alone navigating curbs and simple steps, was unimaginable. I knew he was going to change my life.”

She wanted to pay it forward. Her goal was to purchase a service dog for another child. Unfortunately, the wait time can be two or more years and the cost’s prohibitive to many. Sunny was raised as a service dog and cost her parents $14,000.

Tabitha Bell.

Making A Pawsitive Difference

Today, Pawsitive Pawsibilities is working on placing its 10th service dog.

Not everyone was on board with Tabitha getting a service dog. Her orthopedic surgeon at Rady Children’s Hospital in San Diego was skeptical. “He came around after watching me walk down the hall barefoot, without stabilizing shoes, just holding onto Sunny’s harness,” she said. “He’s now a huge fan of service dogs and told me he could use a dozen or so to help kids he was operating on. He was surprised by the cost.”

She didn’t want that to keep others from getting service dogs. “When we first started we located a girl my age (12) and purchased a wheelchair assistance dog for her,” Tabitha, who is 18 now, said.

The dog, a yellow Labrador retriever named Attie, was trained to retrieve the girl’s crutches, cell phone, and other necessities. “Attie helps her walk like Sunny helps me,” Tabitha said. “We’ve remained friends and she even flew out to visit me and spoke at my high school.”

Tabitha Bell with a new friend who received a yellow lab service dog from Pawsitive Pawsibnilities.

Finding Service Dogs For Kids In Need

Tabitha works through referrals from doctors and physical therapists to find recipients for the dogs. “After reviewing the recipient’s needs, we put them in touch with a trainer,” she explained. “Most of our trainers search dog breeders for dogs that are around 18 months old. Some of the dogs were bred for show and have obedience training. Sometimes, when they don’t win championships, the breeders are willing to sell them. It means our clients have beautiful dogs who are smart and trained to provide specific types of assistance.”

To raise money to purchase the dogs, Tabitha hosts annual concerts, 5K runs, and other fundraisers. “We run the Super Paw 5K in Utah and this year,” she said, “I’m attempting to run a Super Paw Fun Run at UC Berkeley (where she attends college).”

In the past, she participated in the Fun Runs in a wheelchair with Sunny by her side. This year she plans on walking the entire route.

Pawsitive Pawsibilities also helps kids organize lemonade stands and bake sales. “Some of the sales have raised over $250 in a few hours,” she said. “The kids have fun raising money and customers like knowing the children are involved in a positive project. I believe it’s important for children to embrace serving others early.”

Tabitha Bell with Sunny by her side and a friend with his service dog relaxing after a 5K.

Paying It Forward

Tabitha’s a recipient of the 2018 Gloria Barron Prize for Young Heroes, which honors 15 young people from across the U.S. and Canada who have made a positive difference to others. The winners receive $10,000 to support their service work or higher education.

“Without Sunny, I’d have been in a wheelchair and never had the confidence, ability, or opportunity to pursue my own dreams.”

“Tabitha turned a difficult situation,” Barbara Ann Richman, executive director of the Gloria Barron Prize for Young Heroes said, “into something that is doing so much good for other people with disabilities. In doing so, she reminds us all of our capacity to transform our own lives and those of others.”

She’s also teaching others about service dogs. “Without them we cannot live and function independently,” she said. “As more people understand that, they’re more likely to understand why service dogs have a few privileges most pets do not. It makes life easier for those of us who rely on our dogs every day.”

“Having my service dog changed my life. Without Sunny, I’d have been in a wheelchair and never had the confidence, ability, or opportunity to pursue my own dreams.”

Disability

The Blind Man Pushing Companies Into The Future Of Accessibility

A combination of fungal meningitis and medical mismanagement may have taken Albert Rizzi's eyesight, but they didn’t take his vision for the future--or his gumption.

Albert Rizzi comes from a family of foster parents. His grandmother fostered 65 children, and his parents took in their first foster child just a few days after his oldest sibling was born. Growing up, his parents even contributed to the Fresh Air Fund, taking inner city kids into their country home during holidays so they could experience nature firsthand. 

So it’s no surprise that Albert grew up wanting to foster children, and when he couldn’t as a single male, he decided to put his energies into going back to school for early childhood education. For the next few years, he pursued two simultaneous masters degrees (one in education and one in administration) and went on to direct a pre-K and Kindergarten after-school program that serviced 250 students and their families in the South Bronx.

Then things took a turn. Shortly after buying a house in 2005, he had what he thought was an annual sinus infection. When the pain in his head became “tremendous,” he went to the hospital. After five spinal taps, two misread reports, and two months, Rizzi left the hospital with no eyesight and fired from him job. (Yes, that’s illegal.) But he didn’t give up.

“Helen Keller said that the only thing worse than being blind is having sight but no vision.”

“Helen Keller said that the only thing worse than being blind is having sight but no vision,” says Rizzi. “I believe I’ve never seen more clearly in my life.”

It took some adjustment, of course. Rizzi says he felt sorry for himself for a few days. But he had always been a firm believer in limitless potential, which his father was the first to remind him: “We didn’t raise you to be a quitter,” he said. “People look up to you. You always demand 100% from the people around you. So now show us what it looks like.”

Rizzi did.

Albert and his guide dog.

Heading back into the world blind, Rizzi quickly became frustrated with the lack of accessibility he had to digital platforms.“I wanted to assimilate back into society even though I was called ‘disabled’,” he says. But it was digital platforms that were disabled to me. You can’t disable a person. You can disable a bomb or a car or a machine but disabling means make it stop working and moving and functioning. You can’t do that to a person, not really. But still, our lives are so tied to the digital world, and we’re at a disadvantage like never before.”

You can disable a bomb or a car or a machine… but you can’t disable a person. Not really.

By 2008, Rizzi had not just relearned how to navigate the world as a blind person: he had a digital accessibility consultancy up and running to solve the problem.

My Blindspot (MBS) helps companies, government agencies, educational institutions, and other entities get up to speed when it comes to digital accessibility for the blind and print-disabled. There are legally mandated codes that can be programed into websites, mobile apps, native and cloud-based softwares, digitized documents (PDFs), and kiosks to make them compatible with assistive softwares like screen readers that turn the web into audio output, magnifiers for people who are low vision, braille displays, and speech-to-text technology used by many members of the disability community. Far too few entities actually comply or do it correctly.

Where compatibility with assistive softwares might be an afterthought to huge corporations, to someone with a disability it can mean the difference between being able to attend school or seek employment or not… let alone less dire things like booking travel, or shopping online.

Where compatibility with assistive softwares might be an afterthought to huge corporations, to someone with a disability it can mean the difference between being able to attend school or seek employment.

In working with clients, Rizzi always tries to communicate that accessibility is not just the right thing to do. It’s also good business sense: the more people that have access to your company, the better your chances of succeeding. By making sure your websites and others outward-facing products are accessible, you can draw upon not just a deeper customer pool, but a deeper talent pool as well. 

In 2009, MBS made Quickbooks’ platform accessible to the blind. That may not seem like a big deal, but it opened up opportunities for countless visually-impaired people.  “Now, blind and print-disabled people can consider careers in accounting and bookkeeping and can manage their small businesses,” explains Rizzi. He has since worked with clients like American Airlines, the New York Department of Motor Vehicles, Carnival Cruise Lines, and Peapod.

But My Blindspot is only one facet of Rizzi’s activism. He speaks all over the world about accessible technologies, employment, and financial independence for the disability community. And he carries his mission with him all the time. This past April he sued Morgan Stanley for $9 million because their website was not sufficiently accessible for him to manage his assets. He worked with the bank to try to change their practices, but after Morgan Stanley dragged their feet, he felt he had no choice but to sue, which he worries could effect business. “I don’t sue clients,” he explains. “I’m responsible for delivering them the technical solutions to make companies accessible so they don’t get sued,” he says.

But despite his concerns, My Blindspot is still, well, in a good spot. They’re now helping the SUNY and CUNY schools become accessible to the visually impaired. Currently, Rizzi estimates that 90% of the digital platforms used by the schools are inaccessible. But that’s about to change. And when it does, “nobody will have to give up the idea of a having a career in these institutions.”

“Work is the cure for anything.”

That’s what it’s all about for Rizzi. He may have started MBS to make digital platforms accessible, but ultimately, he wants people of all abilities to be able to have jobs. He notes that with more disabled people working, they’d be paying into the tax system rather than depending on it.

“Work is the cure for anything,” he says. “It gives you a sense of value and purpose. My Blindspot is founded on the belief that with the right to tools that promote ability, everyone can achieve greatness.”

Disability

Designing The iPhone Case Of Prosthetic Leg Covers

The Confetti was designed not only to be accessible, but to answer the question: why shouldn't a prosthetic leg cover be cooler than a regular leg?

Prosthetic leg covers usually try to look like real legs. Flesh tone and shaped like a human leg, some even have a fake sock attached, or some other quotidian detail meant to imitate life. The result can be a bit uncanny. They rarely trick the eye on a second glance, and probably cause more staring, not less.

So the makers of the Confetti went the opposite direction. They designed a prosthetic leg cover that comes in bright colors–even glitter. It looks nothing like a leg, but why should it? If fake leg covers implicitly say that amputees should want a real leg, the Confetti’s message is: you can be proud that you don’t.

When the leading Brazilian prosthetics company, Ethnos, hired FURF Design Studio (Mauricio Noronha and Rodrigo Brenner, who were both 25 at the time) to design a new 3D-printed version of their product, they’d originally wanted to jump on the custom, 3D-printed bandwagon. Instead, with the help of the very young designers, they ended up innovating in the other direction and with the release of the Confetti in 2017, disrupting the entire industry.

If fake leg covers implicitly say that amputees should want a real leg, the Confetti’s message is: you can be proud that you don’t.

The Confetti was not the first cover to call off the leg look in favor of a unique design. But it is the first ever unique and affordable cover, and the first mass-produced cover. No two amputees are alike, which means that every cover needs a certain degree of customization, adding to expense. FURF solved for this by making the Confetti easy for amputees to customize themselves. About 70% of amputees can use it and the next iteration of the product which is underway will hopefully accommodate 90% of amputees. The mass produced product costs 1/10th of the price of a 3D-printed custom cover and less than half the price of standard covers. Made of injected polyurethane, it’s also lighter and more durable.

The Confetti is the only product to ever win all three of the most important product design awards: the Red Lion, the iF Design Award, and the Cannes Lion. Folks sat caught up with Mauricio and Rodrigo to talk about their design process and what they learned along the way.

Mauricio Noronha and Rodrigo Brenner of the FURF Design Studio.

What did you learn in the design process that lead to your decision to ditch the fake leg look?

Mauricio: During our research process, we wanted to get as close as possible to the reality of amputees. So we interviewed and spent time with as many as we could. Usually, when they lose their leg, they get a prosthetic that’s a metal tube, and a cover that looks like a leg. A lot of amputees said that the fact that covers try to look like a leg is just too weird. Even with amazingly realistic ones, they said that looking down and seeing a leg that is not actually your leg gave them a strange feeling. They said they didn’t recognize themselves in the mirror. So we went with the extreme opposite. We wanted to do a leg that would be even cooler than a regular leg.

We wanted to do a leg that would be even cooler than a regular leg.

Rodrigo: A century ago, glasses weren’t cool either. They were seen as a handicap. Now, even people that don’t need them want to wear glasses for style. We wanted the Confetti to be another accessory that people can use to express their identities. So depending on the person’s mood, they can customize it with different colors. An athlete representing Brazil in the Olympics wore his half green and half yellow. Another day we were with a girl who was wearing a pink confetti and when we went to a bar at night, she had changed to black and put some flowers in the holes. The holes are there to make it lighter but also more customizable.

The Confetti leg cover fits 70% of all prosthetics, and looks cool doing it.

What went into the decision to ditch the 3D-printed idea in favor of mass production?

Mauricio: When we design something, we like to think about what we are bringing into the world: not just the project itself, but how it’s going to make people feel. In the end, the feeling we wanted to give amputees was self-esteem. Self-esteem isn’t something that people should have to buy. Most of the people we interviewed and spent time with were in the favelas (Brazilian shanty towns – ed.) They were poor people. We learned in our research that the countries that have the most amputees are Brazil, India, and China. So we knew we wanted to make it affordable.

Rodrigo: The 3D printed covers came out a few years ago and yeah, they look really cool, but they’re really expensive! They cost around $4,000 Reals. That’s because it’s a tailor made process. If you had to get all of your clothes tailored, they’d probably look great on you but they’d be really expensive too. We realized that if we made the 3D-printed cover we’d been hired to make, most of the amputees we interviewed would never be able to buy it. That wouldn’t have been fair. So we wanted to make the medium sized T-shirt of prosthetic leg covers. We wanted it to be as one-size-fits-all as possible and also mass produced so it could be cheap.

We wanted to make the medium sized T-shirt of prosthetic leg covers.

To be able to do both, people were going to have to be able to customize it themselves. The way it works is that you cut the bottom tabs to make it the right length for your leg. It fits above- and below-the-knee amputations. You snap the front and back together with magnets. There are no screws so it’s totally waterproof. It was really complicated to create such a simple shape.

V2 of the Confetti aims to up compatibility to 90% of all leg amputees.

Besides all the awards from the design industry, what has the reception been like to the product? What’s going to happen with covers now?

Mauricio: People also told us that every day, even when they were feeling OK with their condition and good about themselves, somebody, maybe a kid, would point a finger, or stare, or ask what happened. Society’s lack of common sense would force them to relive their situation and bring them down. Many said they tried to hide their legs. But after they started using the Confetti, amputees told us that people still approached them but with a different vibe, more like, “wow, that’s a really cool leg!” They stopped hiding their legs by wearing pants all the time. One guy said he started wearing shorts again after 10 years. Other people said they started going back to the beach. That made us so happy. They are little things but they are important!

Rodrigo: Also, the foam, fake leg covers that were provided by the Brazilian public health system cost a thousand reals (around $265 USD – ed.) Since ours only costs 400, it’s now in the health system. People can choose which they want, and they get ours for free. That happened last year. Now we’re selling in fifteen other countries too.

Are you going to design more for products for people with disabilities?

Mauricio: This was our first health industry product. We used to design mostly furniture and some crazy things that don’t have names but now we’re designing more for the health industry.

All of the medical things that surround you just look…medical. They don’t look like they’re trying to make you feel better at all. That’s what we want to do.

Rodrigo: There’s a lot of opportunity because when someone is sick or has a disability, all of the medical things that surround you just look…medical. They don’t look like they’re trying to make you feel better at all. That’s what we want to do. We want to make it cool!

Mauricio: And we want to add a touch of poetry! The symbolism of the name is that confetti is light, colorful, and democratic; everyone uses it and they use it in moments of joy. We really don’t think the world needs another chair but it does cry out for more self esteem, more poetry, and more love. That’s what we hope to do with our products.

Chronic Illness Disability

The Future Of Health Care Tech In Africa

Chronic illness and disability are on the rise in Africa. Luckily, so are clever African entrepreneurs, who are hacking the local health care system in revolutionary ways.

Africa confronts the world’s most dramatic public health crisis. Between countries battling with HIV/AIDS, malaria, high rates of maternal and newborn mortality as well as increasing rates of noncommunicable diseases health systems are straining.

But healthcare tech entrepreneurs are working across the continent to create solutions for the issues their communities face, and often innovative apps or accessible electronic equipment are working to lessen the burdens healthcare providers face, or provide access where it might not be otherwise. While the problems each country face might differ the solutions are innovative, often leapfrogging the stages a developed country’s healthcare might go through.

A couple technicians from Red Bird Health Tech.

The Power of the Pharmacy

In Ghana, West Africa, Andrew Quao and his team have been working on helping to lessen the burden on hospitals and clinics by getting pharmacies to do health monitoring tests.

As it stands, Quao, co-founder of Red Bird Health Tech says people could lose three hours to a full day waiting in a public hospital to be tested for tropical diseases like malaria, or to get their blood pressure, blood sugar or cholesterol checked. The company supports pharmacies in the capital Accra and further along the coast in Takoradi by offering rapid diagnostic tests, staff training and technical support,essentially turning pharmacies into mini-clinics. They can offer tests in five to ten minutes a patient might wait hours for in an overcrowded hospital.

When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing.

“When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing,” Quao says. “You need constant interface with the healthcare system in monitoring them. The hospitals are so burdened and the healthcare system is chocked. People are spending endless productive hours to just get on top of their healthcare.”

Quao and his team hope their growing service will save users time and money and lessen the burden on Ghana’s healthcare system,which he says is “punching above its weight.”

“We have systems that are set up to treat 100 people but they are having to treat 1000. It’s difficult to get some level of quality especially for the public health sector.”

They hope that by offering testing services in pharmacies, people will just go to hospital for more serious issues or treatments, rather than the health monitoring.

Solving The Drug Price Problem

Also working in the pharmacy space is Ghanaian Gregory Rockson—who created mPharma, which gives patients access to prescription drugs at an affordable price. The company has partnered with major pharmaceutical manufacturers, insurance companies, financial institutions and governments to deliver medicines directly into the hands of consumers in a handful of African markets. It connects patients, hospitals and pharmacies to cloud-based software, so doctors know where to get medicines needed.

Rockson says Africa continues to have some of the highest drug prices in the world.

“In Kenya, intermediaries’ margins account for an excessively high 50 percent of a pharma product’s final price, whereas the average in OECD countries varies between 2 to 24 percent of the final price. We built mPharma to create new business models that would enable more patients to have access to the medicines they need at an affordable price.”

“What Africa needs is more physical healthcare infrastructure and human capital.”

So far, mPharma manages a network of over 220 pharmacies and serve 40,000 patients each month and patients pay between 20-30 percent less for their medicines in selected mPharma partner pharmacies.

While Rockson wants to see mPharma become the largest healthcare company and brand in Africa, he says there are a number of challenges within the heath tech landscape in Africa that need to be addressed.

“What Africa needs is more physical healthcare infrastructure and human capital. Once we have this, we can build technology enabled products and services to bring more efficiencies and drive down costs.”

The founders behind Yapili

Is Telemedicine The Answer To Africa’s Mental Health Epidemic?

Mobile phones are ubiquitous in Africa,with an estimated three mobile phones for every four people in sub-Saharan Africa. A report in The Lancet says the widespread of phone and internet connectivity allows for leapfrogging opportunities in Africa by adopting more advanced technologies rather than following slow, classic paths to address health workforce constraints and improve people’s access to quality health services, with innovation as key in developing new services, ways of working and creating technologies to achieve improved health, including training healthcare workers though online courses.

It is through mobile phones that Yapili hopes to link users through the continent with healthcare professionals, near and far without having to step foot in a clinic or hospital.

Co-founder Enya Seguin and market lead Rorisang Mokgwathise are part of a team spread over seven countries working on the service that delivers healthcare and advice to those in eight African countries through an app. Users can connect to local and western health professionals in societies where professional health advice is hard and expensive to get. YAPILI connects users to professionals who can answer questions around pregnancy and family planning, diabetes and hypertension, HIV and sexual health, mental health as well as generic health questions.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on [that].”

Users upload their information into the app, creating a profile and then the reason why they want to speak to a healthcare professional. The app then suggests professionals the user can speak to, trying to match someone in the same country if possible.

The idea was born in Rwanda in 2014 and is now available to more than 1200 users in Kenya, Botswana, Nigeria, Tanzania, Uganda, Rwanda and South Africa, all are English speaking and have relatively high connectivity. Seguin says the most popular services so far are around pre and postnatal advice, as well as mental health.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on it (mental health) because we realized its becoming an epidemic in a lot of African countries,” Mokgwathise said from her base in Botswana.

Closing Down Africa’s Equipment Graveyards

Professor Tania Douglas, a biomedical engineer in South Africa has been researching and speaking about the need for health innovations to be homegrown to fit the local context they are in. Leapfrogging is important for health innovation in Africa, but so is completely new ideas.

“Learning from the solutions that have already been developed elsewhere and adapting them to local needs (i.e. leapfrogging) is a potential shortcut to health innovation. But devising novel solutions to local problems that haven’t yet been addressed elsewhere is also important.”

In 2017 she delivered a TED Talk highlighting an “equipment graveyard” of imported medical equipment from hospitals in Africa which turn out to be unsuitable for local conditions, staff not adequately trained to use or maintain them, or they might not work in the humid and hot environments,or need constant and reliable supply of electricity often lacking across Africa.

In her talk Douglas points to an ultrasound monitor to track the heart rate of unborn babies in the equipment graveyard. These machines are standard in developed countries but developing -not so much. But expensive equipment is not needed for this, and there are plenty of locally-developed solutions that utilise simple technology proving this, integrating engineering with healthcare. The focus needs to be on creating more useful medical devices to help Africans, creating more inventors who know the issues and have homegrown solutions that work for the varied contexts across the diverse continent.

A customer using a Deaftronics hearing aid.

The Future Of Healthcare Tech in Africa

One of the companies Douglas highlighted in her TED Talk was Deaftonics, established in 2015, the company manufactures affordable solar powered hearing aids, made by hearing impaired people for people with a hearing loss.

Founder Tendekayi Katsiga focused on hearing impaired people in developing countries because he found a significant number of lithium battery hearing aids provided by NGO’s and governments to Africans die in their first month. Katsiga developed his solar-powered hearing aid in Botswana and currently is focused on getting them into the ears of children “presenting them with an opportunity to go to school.”

So far, Deaftronics has sold more than 10, 000 units of solar chargers in 40 sub-Saharan countries.

He’s excited about the future of healthcare tech in Africa, believing it will help eradicate diseases and improve overall health outcomes.

“The health tech landscape presents huge opportunities for Africans. It paves ways to make improvements in distribution of medicines using drones in areas which are not accessible. The rapid growth in access to technology, particularly mobile phones and network connectivity in Africa , has created opportunities for health programs, training and data management.”

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.