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Ask Ada 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.

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.

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.

 

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.

Essays Instagram

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.

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.

Health & Fitness

The Aztec Warriors of Amputee Soccer

This up-and-coming team of soccer superstars is showing that you can still bend it like Beckham when you're disabled.

Julian Luna still remembers the day a neighbor told him about an amputee soccer team in Mexico City called the Guerreros Aztecas and asked him if he´d be interested in coming to practice.

Luna, who lost his leg due to a soccer-related injury in his home country of Colombia, had a somewhat predictable answer.

“It was eternal waiting for the day that I could go back to playing,” says Luna, who is now a forward for Guerreros Aztecas, a soccer team that forms part of the Amputee Football Association of Mexico.

Amputee soccer was first played competitively in the U.S. in the 1980s and later adopted by countries around the world, including Mexico.

Team photo of the Guerreros Aztecas.

The rules, which closely resemble those of the standard game, have a few key differences: Outfielders can have two hands but only one foot, while goalies can have two legs but only one hand. According to the World Amputee Football Federation, metal crutches are also not allowed to be used to advance or direct the ball.

The rules dictate play around the world, and n the Mexico league, which is comprised of roughly 200 players and 13 teams— including the Guerreros Aztecas.

Omar Espinosa saw a local newscast about the team after it was founded in 2013 and wanted to help. Espinosa and his brother, Carlos, eventually found themselves volunteering as the goalkeeper and midfield coaches, and have since recruited players and designed drills for the team by watching videos on YouTube. One of the key things they train new players to do is gain the confidence to sprint across a field on their crutches. 

“It´s about overcoming your fear,” Espinosa explains.

Thanks largely to efforts like theirs, there are now 17 players on the team up from six only four years ago. And the Aztecas are getting better. When the team played their first match against a northern Mexico-based team known as Tigres, they lost in a 10-0 blowout. This season, the Guerreros Aztecas finished third in final standings, losing just 2-0 to the Tigres in the semifinal match.

“We want to be champions,” says Espinosa.

“We want to be champions.”

The team’s standings have put it in a strong position for the Amputee Football World Cup qualification round in March, when up to four players from each Mexican team will be chosen to form the national selection that competes in Jalisco, Mexico in August 2018.

An estimated 28 teams from around the world are expected to participate in the tournament, up from about 20 when the last World Cup was held in 2014.

At a recent practice, the Guerreros Aztecas prepared for the qualification round with aerobics, drills, and a 12-man scrimmage. Dressed in multi-colored jerseys, they fanned across the field, raising themselves up0n their crutches before flinging themselves counter-gravitationally into the air to kick the ball.

One player received a pass with his chest and stumbled backward from the ball’s force. Then, he found his balance and continued running on the pitch.

Victor Hugo, a defensive player who was one of the two Guerrero Azteca players chosen to be part of Mexico´s World Cup team in 2014, gulped down water in between a play.

“Coming here after an amputation is like being able to live again,” he says, wearing a pink jersey with a large number “2” on the back.

The players on Guerreros Aztecas all have their own stories. One player known as Toro had an amputation after he was thrown off a bull and was gored by its horn. Then there’s Rey David Angeles, the goalie, who liked to give his cat leftovers from his uncle’s butcher shop and had his arm amputated after it got caught in the meat slicer.

But what ultimately unites them all isn’t the fact that they are missing limbs. It’s their love of the game.

“I like soccer. I like to watch it, play it. It’s not just my passion, it calms me,” says Hugo, who earns his living by performing soccer tricks at traffic intersections in Mexico City during the day.

“A lot of people who join the team say, ‘I played for years, but even though this happened to me, I want to keep playing,” says Espinosa.

The Guerreros’ biggest difficulties, Espinosa explains, are those common to many sports teams: gathering finances and finding fields.

The rules of amputee soccer say that you can’t use your crutches to hit the ball.

For now, local congressman Raul Flores has helped sponsor the team, while others have loaned it fields to practice on and even donated uniforms..

As for Espinosa, the Guerreros Aztecas are a passion project for him. 

“Finding this team has been a lesson about life,” he said. “Disability is all in your mind.” 

Q&As

Crusading For A More Diverse, Representative Hollywood

Steven J. Tingus says that movies like The Shape of Water are missing the opportunity to enact real social change through a better onscreen representation of disability.

Steven J. Tingus wants change. And he wants you to know it.

Tingus, 54, was born with a rare form of muscular dystrophy that makes quotidian acts many people perform everyday impossible for him without physical assistance. He sees art and entertainment as an effective way to normalize people with disabilities, to humanize what he says is often a caricature when it’s portrayed on the screen at all.

Steven Tingus.

So watching The Shape of Water should’ve been a satisfying experience for Tingus. After all, he’s been crusading for greater representation of people with disabilities in the entertainment industry for years.

But one thing bothered him. True, one of the movies main characters, Elisa, had a disability: she was mute. But Sally Hawkins, the actor playing the role, can speak just fine. That’s good, but not good enough, says Tingus.

According to U.S. census figures, about 20 percent of the population lives with a disability of some sort. But that’s not reflected on the big or little screen. On TV, only 1.8 percent of characters have a disability, according to GLAAD. That number shrinks to 0.9 percent for movies. Many times, roles featuring characters with disabilities are played by actors without them.

Since 2011, Tingus has run a consulting firm, Steven J, Tingus Consulting, geared toward promoting those with disabilities in the entertainment industry, both in front and behind the camera. He’s consulted with Viola Davis and her husband’s production company, JuVee Productions, and has built a network of actors, producers, and casting directors to promote stories about people with disabilities and the hiring people with disabilities.

“The entertainment industry can be an incredible ally in creating social change.”

“The entertainment industry can be an incredible ally in creating social change,” Tingus said. He points out that some of the most talented people on Earth have disabilities.

“Unfortunately, very few ever get the opportunity to shine on the world’s stage,” he said. Folks spoke to Tingus about what just need to happen for Hollywood to truly become inclusive.

You had a long career in politics, what motivated you to turn to the entertainment industry?

What motivated me was the underrepresentation of people with disabilities. I did a lot of research and found out it was worth the time. I really wanted to take my disability policy expertise and put it into practice and take on employment issues for people with disabilities in Hollywood.

Why is having more people with disabilities in the entertainment industry so important?

It’s important for representation. When you’re talking about the size of the population, about 20 percent of America has a disability, that’s over 60 million Americans. But only one percent are represented in the industry, whether that’s TV, motion pictures, or behind the camera jobs. So it’s extremely unrepresentative. And people with all types of disabilities, whether visible or non-visible, want to see themselves represented when they go to the movies or turn on the TV. But they just don’t find themselves because all of the characters are played by able-bodied actors.

Have you seen much change since your focus on Hollywood?

I’ve seen a very positive change since 2016 when the Oscars So White Movement started. With that, we started talking about diversity and inclusion. it was during that time period that I really wanted to make sure that disability was part of the conversation started by the movement.

What has been the biggest challenge so far?

The biggest challenge so far has been actually changing the mindset of the studio executives and casting directors in regards to educating them to ensure that people with disabilities are included. It’s not really their fault, they just haven’t had a personal connection to the disability community, because most people in the industry are able-bodied.

What has been the biggest surprise so far?

The biggest surprise is that I’ve found a lot of support with the black community in Hollywood. I really have experienced it firsthand. They are more welcoming to working with me and my contacts, people with disabilities who have talent. There are instances where they’ve involved me, and talent with disabilities, in their projects.

What do you think will come first, a greater presence in front of the camera or behind the camera? why are both so important to have?

I think a greater presence in front of the camera will come first. It’s a lot easier to change [what’s visible] based on the outcry of the public. People want Hollywood to represent them. They still cast able-bodied people for roles in which the character has a disability, for instance, The Shape of Water. That’s a lot easier to change.

In regards to behind the camera, it’s a lot harder because of the hierarchy in Hollywood. The most powerful positions in Hollywood is at the executive level. Without people with disabilities earning positions as decision makers, it’s going to be harder to make change.

I also think that inclusion riders can help a lot. That means that, say I’m able-bodied, I have the right to tell studio execs, if you want me in this movie, you have to make sure to hire people of color and people with disabilities on this project, whether they be actors, production designers, photographers, etc.

Where do you see your cause going in the future?

I hope to see the hiring rate of talent with disabilities improve incrementally.

 

Q&As Roundups

Community Roundup: Imagining A World Where Disability Is Normal

From workplaces offering 'good health' days instead of sick days, to universal, affordable health care, a world in which it is 'normal' to be disabled or chronically ill doesn't sound dystopian at all. In fact, it sounds like heaven.

What does it mean to be normal? There’s lots of ways to answer that question, but if we’re being honest, most people would probably not consider chronic illness and disability as part of the recipe. But that’s wrong. In our lifetimes, every person will get sick, manage a health condition, or become disabled, so it’s *just* as normal–if not more so–to be dealing with these issues as it is to be walking around in so-called “good health,” with no health conditions whatsoever.

That got us thinking. If the average person’s definition of normal is so far off-base, what would the world look like if people with disablities got to define the idea of a ‘normal’ life?

So through our Twitter account, we asked our community, and the answers we got back were amazing. Here’s some of the best we received:

What do you think? What would the world look like if people with chronic illness or disabilities got to define the definition of ‘normal’? Follow us on Twitter @folkstories and let us know!