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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.

Advice

How To Job Hunt When You’re Disabled

Finding a job when you're chronically ill can be a challenge. So we spoke to an expert who has placed hundreds of disabled jobseekers for tips.

When my chronic illness started in the the winter of 2012, I tried to shrug off my symptoms. Desperate to keep my job at a small public relations firm, I ignored my growing fatigue and unexplained nausea and forced myself out of bed every morning… until I collapsed. I was hospitalized, and I eventually learned my illness was never going to go away – but it would take several more weeks before I would accept I couldn’t work like I had before. My illness required creative thinking.

I’ve had difficulty working full-time since. Nor am I alone: in the United States, only 22% of people with disabilities are employed, while only 4% of them were not in the market for work. Given that a billion people are disabled worldwide, that’s a huge pool of talent being ignored by employers, who can be reticent to hire people with unpredictable chronic illnesses, or limited capacities in other ways.

So what can a chronically ill or disabled jobseeker do to increase their chances of being employed?

Workbridge, a national recruitment agency based in New Zealand, works with both employers and jobseekers to help people with physical or mental health conditions find the right fit. They fill more than 3,500 positions a year, and are “inundated with employers” looking to advertise and work with them, according to Employment Consultant Nicola Zielinski.

Zielinski, who’s been working in this sector for fifteen years both in New Zealand and the United Kingdom, says that Workbridge places 90% of the people they work with. But when you’re chronically ill or disabled,

“It’s very rare that there’s not a job out there for someone,” says Zielinski, who says Workbridge places 90% of the people who come to them.  “I get asked what sort of sectors we work in, and I say: anything. People with disabilities can do all types of jobs.” You just need to maximize your chances.

Be Patient, And Think Outside The Box

Finding the right job can take time. Zielinski encourages jobseekers to find a way to connect with others first, like volunteering.

“It’s easy to look at it and see the end goal of paid employment, far away,” But you can break it down into steps. Volunteering or very part-time work can test your skills, give you new ones, and give a sense of routine and purpose that many people need.”

Paul Hoverd, a 50-year-old stroke sufferer, is a perfect example. Paul had extensive experience in many fields, including as police officer and a teacher. Feeling unable to do that sort of role following his stroke, he went through six months of job rejections. What finally got his foot in the door was when Workbridge discovered Paul’s love of animals and photography, and suggested a first step: volunteering with the local SPCA (Society for the Prevention of Cruelty to Animals).

“Opportunity could look different to what you thought.”

The unpaid gig gave Paul the opportunity to rebuild confidence, get back into his routine post-stroke, and practice his pup photography. Soon, he was working at a canine kennel, and is now trying to take his work to a new level by attaining his Bachelor of Visual Arts and Design.

Making a plan is great, but be prepared to deviate from it, Zielinski says. “Opportunity could look different to what you thought.”

Be Upfront With Your Prospective Employers

Disclosing the nature of your disability early on means both you and your employer know your abilities and skill levels. Many companies are eager to hire qualified people with chronic illnesses and disabilities, but they are afraid of uncertainty. Being crystal clear at the outset about what your capabilities are can go a long way to removing that uncertainty from the hiring equation.

“Often people have been living with their condition for a long time, so they know exactly what their abilities are,” says Zielinski. But a lot of times, what they can or can’t do because of their illness is the elephant in the room, which no one wants to directly address. It’s understandable that a job-seeker who is feeling sensitive about their limitations might want to avoid the subject, but it’s best to just tackle the issue head on.

“It’s important to establish those so everyone feels informed. Recently I worked with someone who has Cerebral Palsy, whose speech is affected. Other than that his disability is invisible, so someone hearing that can make assumptions. He’s learned to let people know what’s going on.”

Remember: You’re Worth Hiring. 

While it’s important to let people know if you have any limitations, Zielinski says it’s still critical to keep the focus of the interview on what you can do, not what you can’t. And a big part of that is being positive.

“People will be keen to work with you if you’re positive and committed, and clear about your limitations so they know all the information from the start,” she says. “Attitude is the number one key ingredient to getting a job. Most people can learn how to do a job, but what goes a long way is someone’s willingness, honesty and openness.”

“[Getting a job is] much more about ability than disability.”

Many disabled people can understandably feel defeated by the jobseeking process even before it starts. But it’s important to go in believing in yourself, and remember that you are worth hiring. Because if you’re not going to advocate for yourself as the best person for the job, who will?

At the end of the day, most employers want the most qualified and confident person for a job. Illness or disability doesn’t necessarily factor into that. “It’s much more about ability than disability,” Zielinski says.

Employment Is A Two-Way Street

Zielinski’s advice gels with my own experience. Though I never went back to my old job full-time, I have, in the years since, been able to reclaim a lot of my sense of purpose through volunteering my PR skills to a local women’s organization, as well as freelance writing, which lets me work around my illness and set a lot of my own deadlines.

And as for community: it’s just as key as Zielinski suggested. Isolation is an issue for many people with chronic illness and disabilities. Luckily for us, we live in a world where we can get connected even if we can’t leave the house. And we can get work that way too.

The statistics don’t lie. Disability is an ever-growing challenge, and people living with it are vastly underrepresented in the workforce. But all of us have something to offer. And our best efforts should be met by employers who recognize just how much talent is going untapped.

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.

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.

Advice Explainers

Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Disability Q&As The Good Fight

Meet Jack Carlson, The MacGuyver Of Adaptive Bikes

When you want an affordable trike for a kid with a disability, this is the man to call.

Adaptive bicycles and tricycles for children with mobility issues can cost thousands of dollars. Jack Carlson, a single dad of three in the St. Paul Minnesota area who works in a bike repair shop, is working to improve access.

Carlson has been called the MacGyver of adaptive bikes, because he’s adept at taking whatever materials the bike repair shop has handy to customize bikes to a child’s needs (for instance, shaving and mounting an old pair of roller blades for a kid who has trouble keeping their feet on the pedals).

He works with individual families as well as Gillette Children’s Hospital and other organizations. And because not everyone can afford to buy or customize a special needs bike or trike, he just raised over $70,000 through a GoFundMe campaign to bring adaptive bikes to those who need them.

Folks recently chatted with Carlson about how he got interested in adaptive bikes and why he’s passionate about this issue. The following excerpts have been edited for clarity and brevity.

Jack Carlson, working on an adaptive bike.

How did you get involved in adaptive bikes?

I’ve dealt with bicycles since before I was in high school. A friend of my dad’s owned a bike shop, and I went to work for them between ninth and tenth grade. I did that for years, trying different things and then coming back to it. I started working for Strauss Skates and Bicycles back in 1987.

One of the guys that used to work there came in with his daughter looking for a three-wheel bike. She had special needs, and he couldn’t find one, so I looked around and found one that was a price that he could afford because the other stuff was out of their price range. We got her that bike, and it was just so overwhelming that I took a little more of a step into it. We tried to do a little more with trikes and stuff like that, for about 10 years just dabbled in it.

We had a lady that called that was selling the trikes that we sell, and she wanted to get out of the business. She had her own special needs child and needed more time to deal with her own stuff, so she recommended that we take over. We took over from the company, and it’s been gangbusters ever since.

One satisfied customer.

What was the reaction of that first tricycle for a special needs kid? Why was that such an important moment for the family and an aha moment for you?

Just seeing the smile on the girl’s face. They came back in about five years later and wanted it tuned up and stuff, so I did that, but it was just the overwhelming happiness of it. I was getting pretty tired of just doing bikes and skates. I needed something else to challenge me. I’ve always liked to make things, so it gave me something to challenge myself.

In addition to selling adaptive bikes and trikes, what are some of the adaptations you’ve made to suit individuals’ needs?
The first one was a little girl that had shorter legs. Her legs weren’t keeping up to her upper body. Her mom came in and wanted a bicycle with training wheels. I directed her towards the trike, and she just didn’t want any part of it. I had an idea that I’d seen with a little 16-inch bike and cutting down the frame. The frame would be shorter in the leg area, so it would fit her better. I rewelded it.

For a lot of these kids, riding a bike really helps their physical development.

The main goal is to make it so her daughter could seem like everybody else, and it did because she could go on rides with the family. Granted, it’s a smaller bike, so they’re not going to go as fast or as far or whatever, but at least they could all ride together.

We’ve made bikes for kids that don’t have a hand. If you only have one hand, your balance is off because of it. We can make something to fit that so that keeps their balance better.

Tell us about your GoFundMe campaign. Why was this important to you?

It about being able to help families. The thing is that when these people have special needs, they also have lots of bills beyond us–doctors and stuff like that–so that takes up a great portion of their money. If this can help the children get out there and ride more or get out and ride at all, it’s worth it.

If this can help the children get out there and ride more or get out and ride at all, it’s worth it.

For a lot of these kids, riding a bike really helps their physical development. If people have weaker legs, it helps them strengthen them. If people have a weak left side or a right side, it helps strengthen that. It gives you a lot of satisfaction to see somebody be able to ride a bike and go out and smile.

Disability The Good Fight

How To Travel The World By Wheelchair

After a car accident left him a triple amputee, John Morris is on a mission to make travel accessible to anyone.

When John Morris was 23, both of his legs had to be amputated below the knee after a life-altering car accident. His right hand was amputated as well, necessitating that he move around in a powered wheelchair.

For many, this would end all dreams of travel. But John Morris isn’t most people.

Just six weeks after the surgery in which his legs were amputated, the Florida State graduate journeyed across the country with his sister to see his school’s football team play in Pasadena, California’s Rose Bowl.

Since then, Morris, now 28, has traveled all over the world, from Moscow’s Red Square to the Burj al Khalifa in Dubai, to Beijing. Eventually, he decided to launch a website, called Wheelchair Travel, to inspire other disabled individuals to go see the world.

Folks sat down with Morris to learn more about his love for travel, and his belief that travel can be accessible to anyone.

You moved around a lot at a young age, which you say on your website sparked your interest in travel. Can you tell us what makes travel so rewarding for you?

I love travel for all of the typical reasons—new sights, sounds, tastes, and experiences —but also for the opportunity to test the boundaries of my abilities as a person with a disability. Travel presents challenges and conundrums, exposes me to new people, cultures, and languages, and demands my attention. No two days are the same, and I love having a life of travel that is filled with unique experiences.

I love travel for all of the typical reasons…but also for the opportunity to test the boundaries of my abilities as a person with a disability.

You had a life-changing car accident in 2012, but you haven’t let it stop you from traveling. What are some of the biggest roadblocks disabled travelers deal with?

There will always be people in our lives who focus on what we can’t do, things that our disabilities make difficult or impossible. But accessible travel is possible… even for this triple amputee who relies on a wheelchair to get around. Convincing ourselves that travel is possible is easier said than done, though. And, when we do take that leap of faith, we’ll encounter obstacles that test our spirits. Broken elevators, sidewalks without curb ramps, hotel rooms that don’t meet our needs, inconsiderate people and discrimination: we’ll encounter all of those things at some point. But there is always an alternate path. When a street is blocked, we don’t stop and give up, we circle back and search for another way. That’s what makes every trip so rewarding—opportunities to overcome, to work out solutions and to prove ourselves as capable.

What motivated you to start your website and to develop it into a resource for traveling while using a wheelchair?

Information unlocks possibility. When I took my first trips as a wheelchair user, information on the disability travel process and the accessibility of destinations was lacking. I created WheelchairTravel.org to empower people like me with information about travel, allowing them to unlock new opportunities and open the world to themselves.

John Morris of WheelchairTravel.org is on a mission to make travel accessible to everyone.

What has been the biggest surprise for you since launching the website?

The demand for accessible travel information has been overwhelming. When I first began living my life from the seat of a wheelchair, I saw only a couple others like me each week. But, amazingly, when I launched the website, readership quickly grew to exceed even my wildest expectations. The truth is, nearly one in every five people have a disability, and we have the same dreams and desires as our able-bodied peers. Among those are travel and the opportunity to see things like the Great Wall of China, the Eiffel Tower and the Statue of Liberty. I am honored to show them how to make those dreams a reality.

The truth is, nearly one in every five people have a disability, and we have the same dreams and desires as our able-bodied peers. Among those are travel…

What’s some advice you give to disabled people who want to start traveling?

Never be afraid to ask for help. Normally, the people we turn to in times of need are our closest friends and family members. But there is a much bigger safety net that protects us all: our humanity. You will always find someone willing to help – whether you are the homeless guy living on the street, the tourist who needs directions, or the wheelchair user who ran out his wheelchair’s battery in Beijing, China. Yes, that last one was me – and my safety net was there. A total stranger pushed me and my wheelchair all the way back to my hotel. So, if you need help, don’t shy – ask! When we work together, we all achieve more.

What’s something that non-disabled people don’t realize about traveling while using a wheelchair?

Few of my able-bodied friends understand accessibility, which can make planning outings or trips difficult. Hail an Uber? Not with a power wheelchair. Restaurants? They don’t all have accessible entrances. Theme parks? I’m charged the same for a ticket, but can only get on a ride or two. Stay at a friend’s apartment? Walk-in showers are not the same as a roll-in shower. The majority of people in our lives don’t understand the world was built for the able-bodied. As a result, people with disabilities must spend time planning their travels to account for any accessibility barriers that may exist. Travel—even local nights out—aren’t as straightforward for disabled people. Hopefully, as our community works to educate our friends and society at large, we will put a greater focus on the need for universal design and the creation of public spaces that are accessible to all.

The majority of people in our lives don’t understand the world was built for the able-bodied.

What are your future traveling plans? Future plans for the website?

The world is enormous, and I will never run out of places to go or people to meet. But I’m especially looking forward to visiting some places this year that I have already been to many times – Beijing, Boston, and London are all on my schedule, and I look forward to exploring new neighborhoods and meeting old friends. And, no matter where life takes me, I am committed to maintaining WheelchairTravel.org as a resource for my sisters and brothers in the disability community. Whether through injury, old age or an unexpected diagnosis, the community is growing every day. The world should be open to us all, and I’m happy to help in whatever way that I can.

Anything else you’d like to add?

One of the greatest gifts travel provides is the opportunity to enrich our perspective by meeting new people. But the opportunity to grow in understanding of the world doesn’t have to stop when our vacation ends. Say hello to strangers—at the grocery store, at the dog park or on the city bus – say hello and expand your horizon. Life may not be a constant vacation, but we should never stop traveling.

 

Disability Essays

My Disability Is Invisible. I’m Still Disabled.

After falling out of a tree, I experienced a traumatic brain injury that affected nearly every aspect of my life. So why is it so hard for even friends and family to believe I'm disabled?

Not long ago, an old friend and I were catching up at the coffee house we both used to work at. I had entered a Master’s program in Boston the previous year and was visiting San Diego to see friends and family. I ordered an ice tea and asked the barista if they wouldn’t mind setting it at the counter where we were seated. After sustaining a traumatic brain injury (TBI) a few years ago, I have trouble carrying any kind of liquid without sloshing it.

“Y’know, brain damage,” I casually mentioned to my friend by way of explanation; he knew about my accident and balance issues.

“You use that as an excuse a lot,” he carelessly replied, as if I had just said for the millionth time that a dog ate my homework.

Except it’s not an excuse. I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage. Since my traumatic brain injury, I’ve suffered from ataxia and poor fine motor skills. Carrying a glass of liquid without spilling it has become a pipedream; writing anything by hand is painful.

So how is it that even my friends, the people closest to me who know what I went through, could categorize that as just an ‘excuse’?

It’s not an excuse. I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage.

The answer, of course, is because the brain is locked away inside your skull, and it’s hidden from sight until it’s quite obviously not working right. And since my brain damage mostly exhibits itself in subtle ways, it’s easier for even smart people to brush off my trauma as an ‘excuse’ than to put themselves in my shoes.

But none of that makes me any less disabled, even if it took me a while to accept that fact myself.

Throughout the majority of my life, I was proud of how I communicated. There’s an ironically unspoken premium placed on the ability to communicate in our daily lives.  We take for granted our own ability to talk — how easily we can improvise a sentence. Or, at least, I did, until it was taken from me.

From a young age, I loved to read, even annotating books to tease out their meaning. I was a natural critic: I never had a problem explaining why I thought the way I did about a book. As a military brat, books were my constant friend; I’d take them up into trees in the backyard of whatever new home we’d move to, and while the day away, perched on a branch, devouring a novel in the shade.

I never stopped reading, and I never stopped climbing trees. When I grew up, I went off to the University of California, Santa Cruz’s campus (full of redwoods) to study literature. And it was there, while climbing redwoods near campus with friends, that I experienced my traumatic brain injury, after my chronically low blood pressure caused me to faint and drop to the ground from the height of 20 feet.

A close-up of the author’s eyes after surgery.

And it was there, while climbing redwoods near campus with friends, that I experienced my traumatic brain injury, after my chronically low blood pressure caused me to faint and drop to the ground from the height of 20 feet.

I ended up in a 10-day coma. After I woke up, the doctors told me I’d experienced a traumatic brain injury, with all of the complications therein. Over the next six months, I relearned how to walk (albeit with regular balance issues that persist to this day) and overcome a paralyzed vocal cord. Meanwhile, damage to my occipital lobe caused diplopia (double-vision) that was fixed with an eye muscle surgery nine months after my accident.

At first, everyone seemed to understand all of the initial physical issues because they could see them — I clearly couldn’t walk and my voice was barely a whisper. When I looked at someone, my unfocused eyes gazed past them, a something my friends and family lovingly called “eerie.”

Eventually, though, the symptoms of my brain damage faded away. They never quite disappeared, but they became easy to overlook, even if my brain itself was still damaged and healing. For example, if more than one person spoke at the same time, I couldn’t understand what was being said. If someone’s phone rang, it scrambled my thoughts and made it hard for me to keep my balance or walk.

I was still literally and figuratively unbalanced… but people didn’t really notice anymore. “I feel like Harrison Bergeron, that Kurt Vonnegut character that has his thinking interrupted with loud noises pumped into his head,” I once told my boyfriend; he looked at me blankly, and suggested we go to a bar, oblivious to the fact that cacophony was the last thing I needed. Plus, dodging stools in dim lighting with my balance issues? Yeah, no thanks.

The author in her hospital bed during her 10-day coma.

Besides walking and disruption from sounds, I often struggled to find words and found myself tongue-tied. I’d mean to say one thing, and say the other, or else smash together two unrelated words into a nonsensical portmanteauPeople corrected me all the time, and if I struggled or stuttered mid-sentence, they’d attempt to finish my sentences for me… often incorrectly For someone who prided herself on her ability of self-expression, my aphasia mortified me.

There are other symptoms too. Because of my balance issues, I now get chronically car sick, and can no longer legally drive. The abilities I do have take a nosedive if I don’t get a full eight hours of sleep, including my balance and spatial awareness.

Even so, the closest people to me regularly forget that I have a brain injury. For example, during a road trip to San Diego with my mom in which I was playing navigator, I once forgot the word ‘left’ when she asked me which way she needed to exit the freeway. Instead, I stuttered and frantically pointed where she should go. “I can’t look at you when I’m driving,” my mother snapped. “If you can’t give me directions you can’t sit up front and you’ll just have to sit in the back and be sick.” At the end of the day, she would find where we were going and forget about the difficulties of getting there; a year later, I’d still remember that car ride and the burning shame I felt after.

Why is it so hard for others to accept that I am disabled? Perhaps it is partially because I have had trouble accepting it myself. For years, laughing at my shortcomings and saying I was ‘brain damaged’ was my way of flippantly avoiding the hard truth that I am disabled, and this is my life now.

You can’t expect other people to accept your disability if you can’t accept it yourself.

Now, entering my fourth year of recovery, I can admit with conviction I’m disabled. But my friends and family still often act skeptical, telling me I don’t look disabled, as if every disabled person looks similarly. These days, when someone doubts my disability, it’s easier for me to show them my subway pass with the handicap symbol in the corner than try and convince them.

Even people close to you can sometimes forget you’re disabled if you don’t advocate for yourself.

And that’s wherein the problem lies: I can’t have a doctor following me around all the time saying, “Yeah, she’s disabled. Believe her.” When a disability is invisible, it can be ignored or trivialized at convenience by everyone, even the people closest to them. So it’s up to me to be my own advocate: telling people, for example, when a bar is too loud for me, and forcefully correcting people who accuse me of using my brain damage as an ‘excuse.’

Because if there’s anything I’ve learned from all this, it’s that you can’t advocate for yourself if you’re living in denial about the ways in which your life and abilities have changed.

After all, you can’t expect other people to accept your disability if you can’t accept it yourself.

Disability Essays Instagram Vision & Hearing Loss

Falling Back In Love With Music After Deafness

40 years after sudden hearing loss seemingly ended my career as a pop music sensation, I finally learned to embrace my deafness, and become a musician again.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf. Music, as the experts now tell us, is essential to brain health. We’ve always known it filled the soul and senses, transporting us through all the years of our life, good years and bad.

But what if, after a life of composing, singing and playing music, you can no longer hear it or hear it clearly as you once did? What happens to the brain, to your heart and soul—and to you—without it?

At age 29 in my left ear, and then again at 31 in my right, I became deaf-with a small “d.” That little “d” also means “hard of hearing,” “hearing impaired,” “hearing challenged,” “adult onset deafened,” “adult late deafened,” and other sobriquets. I wear a hearing aid in one ear and have no hearing in the other.

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career…

Losing my hearing when I did was a stroke of unbelievable bad luck. It came in the middle of a highly successful and lucrative music career that ended when deafness arrived. Starting in 1973 as a 24-year old, I recorded an album for a small record label (Evolution), watched as two songs made it to the Top 100 on the American pop charts, while unbeknownst to me at that time, another song became a #1 hit in Brazil. I was signed to CBS/Epic Records in 1976, and spent the next few years writing and singing national advertising jingles – including a parade theme for Disney called “I’m Walking Right Down the Middle of Main Street USA” which remains today, a Disney staple.

All that and what might have been came crashing down in 1981. Not only could I suddenly not hear as loudly as I once did, but what hearing I had left came with tonal distortion and the constant drone of low and high-pitched tinnitus.

Hello deafness, my new friend. So, what do I do now? I pondered. More importantly, who am I now? My whole identity–that of a socially gregarious man and a successful composer, singer, musician and recording artist—was wrapped up in my ability to hear, and now my hearing had been compromised. I had no idea what to do, no guides to assist me. But I knew I would have to try to adapt myself to this new life without music, and the identity music had given me.

Sudden deafness is tragic and soul-crushing. The inability to communicate “normally” changed my life from one of confident engagement to a life in the shadows. Deafness hindered my simplest interactions and made day-to-day life a maze of compounding difficulties. And it hampered my desire to communicate with others, especially when they were impatient or indifferent to what I was going through.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.

For years, I didn’t want to admit to being hard of hearing, let alone identify as being deaf.  Often called the “invisible disability.” I was happy to keep it that way for as long as I could. I would only admit to being deaf when there was is a “failure to communicate” (often on my part) and I could keep it hidden no longer. I took pains to avoid being grouped with the really, really Deaf, with a capital “D.”   Surely, I was not one of them, and anyway, I didn’t need a support group.

But deafness changed who I was. More than just the hearing aid I wore, it changed the way I lived my life. I avoided loud places, turned down lots of invitations to do fun things, and isolated myself by avoiding people who didn’t know of my “affliction.” And when I did get together with people, I became loud and argumentative, talking over others because that way I didn’t have to listen.

As for music? I rarely ever listened to it anymore. I would sometimes sing, but I knew there was no connection between my singing and the correct pitch of a note or phrase. I was resigned to never being a musician again.

I was resigned to never being a musician again.

Yes, I had jobs, relationships, even married. Yet even within those circumstances my discomfort and awkwardness never really left me. Those feelings only really went away when I hid from others, or went on the road for my job, but being alone much of the time eventually brought me to isolation and despair.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

It was a conspiracy of different events that inspired me to return to music. In 2008, a writer from the Midwest contacted me after finding my album in a remainders bin in a music store and asked me why I never did another. Intrigued, he did an interview with me and wrote a story for his music blog. That story unearthed fans of 30+ years from around the world that I never knew existed. I vowed then to at very least put my first album onto a CD, but I never believed that making music again was in the cards.

But in 2009, I got my first digital hearing aid which allowed me to hear a much broader range of tones and I realized that I might be able to hear what I needed to hear to get back to music making. In 2010, a fan of many years visited me with a wonderful story as to how he had grown up with my music as a lad in South Africa where his Dad ran radio stations. His encouragement played a significant part in moving me forward. Around the same time, my wife passed away at a young age and her death impressed upon me the need to pursue my passion without delay if I ever hoped to give music a try again.

Things did not really change until I decided to take a shot-in-the-dark stab at reclaiming my musical life.

Lots had changed since I had first become deaf. An auditory trainer brought me up to date on new brain research that indicated that even the small amount of residual hearing I had left might give me enough of a thread to improve my speech comprehension. That would not only help me with my isolation by allowing me to spend more time with others… it had the tantalizing possibility of improving my musical hearing through listening exercises.

Meanwhile, I discovered that hearing aid technology had expanded beyond speech, and now allowed me to hear musical tones I hadn’t heard for years. Galvanized, I worked with a vocal coach to recover my voice, and work breathing techniques and vocal stamina. Phonak, my hearing aid company, not only helped me to launch a Kickstarter campaign to return to music, but also enlisted me to write articles for their blog, Hearing Like Me, about my life with hearing loss. Over the next three years, I wrote more than 35 blog articles and responded to questions and comments not only about music and hearing loss, but also about how to negotiate a life with serious hearing challenges.

This was the “Aha” moment that I believe ultimately saved my life.  For most of my adult life, my hearing loss seemed like a meaningless personal tragedy. I was never able to compensate for it professionally, or to find peace with my new identity as a deaf person. But now that I was connecting to others about my experience through writing, I suddenly found myself coming to peace with who I now was, and the strength to start rebuilding my life in earnest. I now had an international audience of people like me who had endured many of the same things that I had and with whom I could communicate and perhaps even inspire. After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Eventually, I attended my first ever hearing loss community meeting and joined the Association of Adult Musicians with Hearing Loss (AAMHL). I was mortified to learn what I had been missing all these years: peers and new friends who coaxed me out of the shadows, and helped me see that there was more to life after hearing loss.

After years of trying to avoid fellow deaf people, I had finally managed to connect to them… and in so doing, found my place in the world again.

Moving beyond my own deafness reinforced my desire to return to music. While my audiogram has not changed in more than 40 years, I now see that it reveals more than just the defects in my hearing; it also allows me to see what hearing still remains, and target it with new compositions. After two years of training and endless practice, I have returned to performing live. These performances aren’t perfect, of course, but I simply call them “works in progress.” I have even gone back into the studio to record new music, and I’m now planning a busy year including a trip to Brazil to perform for fans who made one of my original compositions a #1 song there in 1974.

Stu Nunnery today, performing in St. Louis.

I could never have imagined that my hearing loss and the tragic narrative that grew out of it would become my redemption; that in rebuilding my connections to music and to my community of peers, I would rediscover joy and my sense of self. I may never regain my hearing, but by finally embracing my abilities in whatever forms they might take, I have finally found peace.

Beethoven is reputed to have said that “playing a wrong note is nothing – but playing without passion is unforgivable.” And famed trumpeter Miles Davis once said that “if you play a wrong note, continue – It’s the next note that counts.”

Whatever your challenges, find the notes to your own song and sing them with passion. They’re perfect just the way you make them.

Mental Health Q&As

The Feminist Rabbi With Autism Who Wants To Make Judaism Accessible

According to Rabbi Rutti Regan, the Jewish faith needs to reflect all aspects of the human experience, including what it means to have faith as a disabled person.

Recently, a coalition of Jewish news outlets and organizations—including Haaretz, the Jerusalem Post, or a disability blog called The New Normal—conducted a survey to understand the context of disability in the Jewish community. Despite the fact that almost one in five Americans have a disability, the poll found only eight percent of respondents were disabled. That strongly implies disabled voices are being excluded from the Jewishe community.

That’s a problem Rabbi Ruti Regan is working to change from within. As the first openly autistic rabbi to be ordained by the Jewish Theological Seminary in 2017, she focuses much of her energy on making the Jewish community and institutions for friendly to those with conditions: from instructing leaders on how to uproot ableism in their communities to transforming temples so they are accessible.

Folks spoke with Rabbi Regan to learn more about her projects and how she is personally and professionally committing to making religion inclusive. The interview has been edited for clarity.

What made you interested in becoming a rabbi?

I saw it as a way to act on some of the things that I really care about. I started in academia studying History and Jewish Studies as an undergrad, and then studied at the Conservative Yeshiva in Jerusalem from 2008 to 2010, and in New York at the Drisha Institute for Jewish Education’s Scholars’ Circle from 2010 to 2012. But after spending that time in the academic circles, I realized there were leadership roles within the community that I wanted that required me becoming a rabbi.

What are some of the projects that you are leading now?

One of our major projects right now is to create resources and training for rabbis and cantors on disability-informed spiritual leadership.

Our society, in general, has got a lot of work to do in responding to the spiritual needs of disabled people. And, advances in disability studies are especially important to the communities now. There are specific leadership changes that need to occur using the tactics of disability-informed spiritual leadership: for example, how to give a sermon that applies to everyone in the room, including the disabled. Their spiritual needs are often not on the radar of people in leadership, even though, like me, they might be disabled or have a lot of friends with disabilities, and therefore be worried about death.

We’re also working on a commentary on the haggadah (editor’s note: the Jewish text that sets the order of the Passover Seder, the main meal) from a disabled perspective. The Haggadah project started in part because Autism Awareness Day is one of the most degrading days of the year for me as an autistic person, and one year, it fell two days before seder night. A major theme of the Haggadah is going from degradation to praise. It meant a lot to me that year. [My colleague] Jessica Belasco and I both saw a lot of resonance with disability in the Haggadah — so we decided to study it closely together and write a commentary. The

Haggadah is also about exile. It’s about living in exile and facing intractable oppression, and still believing in freedom and love, and building things that are sacred.

Is that work being done by your organization?

Yes. Our organization is called Anachnu, which means “We” in Hebrew. We are a religious organization. A lot of what we do is aimed at creating disability Torah (editor’s note: Torah in this sense refers to spiritual teachings, not the first Five Books of the Bible), in the same way that feminist Torah has been important. (And we’re both!) That’s why we’re writing a Haggadah commentary, and that’s why we’re creating materials for rabbis and cantors.

Can you tell me about how your explicitly feminist project, “Embodied: Disability as a Jewish Feminist Issue,” began?

When I was studying in Israel, my hevruta (study partner) was pregnant, and she was describing the ways that doctors and random people in the street were treating her and her body, and her experience was so familiar to me as a disabled person. People are very paternalistic and treat you as if you are not fully human. That mutual experience led me to create Embodied: Disability as a Jewish Feminist Issue, which is a 6 week online class, with the Center for Jewish Feminism.

How do you see your disability activism intersecting with feminism?

When we say that, “Feminism is the radical notion that women are people,” we need to think about everyone in our community. Conversations about disability aren’t always recognized in feminist circles. People with disabilities are people too.

The dehumanization of people with disabilities is so entrenched into our society that it can be hard to notice.

The dehumanization of people with disabilities is so entrenched into our society that it can be hard to notice. Society tells us that the people who matter are essentially cognitively and physically the same. For instance, when entering a building, if there is no ramp, it tells us that the people who will enter this space are all able to use stairs. In schools, educational strategies communicate that people who are the same age should have the same cognitive capabilities. That approach to pedagogy has led to the separation of students with disabilities. The problem is, it doesn’t help people with disabilities learn better; instead, it just furthers the marginalization of the entire population of people with disabilities.

How does your experience with autism affect your work as a rabbi?

People often ask me I overcame disability,, and I want to be really clear that I didn’t. I am who I am. Just like I can’t grow out of my womanness, I can’t grow out of my disability. And I am not special. There are lots of people are who are physically and cognitively similar to me who  are living without freedom, not because of their disability but because they are oppressed. I am not willing to separate myself from other disabled people.

What are the most significant tools available to community leaders for improving accessibility?

Being disabled or queer or a woman doesn’t make me an alternative Jew.

I believe that the most important tools are love and integrity. I love Judaism and Jewish liturgy. We’ve inherited something amazing. Every generation has added to and improved it, and now it’s in our hands to do some of that work. A lot of the work of the moment is to build ways for the Jewish tradition to more fully recognize everyone’s humanity. This is being done in feminist contexts, in LGBTQ contexts, in disability contexts, and so on.

For me, it’s not about creating alternatives — being disabled or queer or a woman doesn’t make me an alternative Jew. When our ritual does not reflect someone’s full humanity, we need to find ways of fixing that which can become normative. That is much easier said than done, but it’s also our responsibility to figure out how.