Mind the Gap. What does that mean to me? In a way my whole life has been lived in the gap. I have a physical disability called Osteogenesis Imperfecta, or Brittle Bones Disease. Due to numerous fractures in utero, I have bent arms and legs, which cause me to have a shortened stature. I have never walked, but I started using an electric wheelchair when I was two and a half years old (many doorways and toenails were destroyed in the process of learning how to drive at such a young age). I have been playing violin for over 20 years, in large part thanks to a creative music teacher who helped me to adapt my style of playing. I hold my violin upright in my wheelchair like a tiny cello instead of on my shoulder. In 2006 I joined my first band, in 2011 I wrote my first original song, and in 2016 I won NPR Music’s Tiny Desk Contest.

Now I am a full-time touring musician, with the help of my husband who travels with me. We are constantly improvising on this new musical journey, navigating our lives in the Gap. After all, having a disability often puts you outside the mainstream, where you are forced to fight your own battles for equal access while others your age are busy partying or generally being young and carefree. What’s more, pursuing a career in music with a noticeable disability is unfortunately still a relative anomaly and I have to work around additional obstacles in order to get across the country and play shows. And while accessibility issues mean perhaps life often lived on the fringe, it isn’t the area where I feel the gap the most.

If you were to ask me what the biggest “gap” has been for me so far, I would say sexuality. That may seem surprising, but I know am not alone in my sentiments. Research shows that sexuality is often an area of emotional turmoil for people with disabilities. According to an article from the Center on Human Policy, “many people with disabilities consider sexuality to be the area of greatest oppression.”

So why is sexuality such a difficult area for people with disabilities? And what have I learned from my life in this gap? And how can the lessons I’ve learned along the way help you, regardless of your physical ability?

First, in the spirit of full disclosure, let me start by saying that I am just one person with a disability. I cannot possibly represent every person in the disability community and I don’t intend to speak for others. Furthermore, I was born in 1984 and I identify as a heterosexual woman – so my experiences with sexuality and beauty come from a very specific time and place. There are as many stories of disability and gender as there are people – so after you hear my talk, try to remain open to the millions of other stories and perspectives there are out there. The human race is an incredibly diverse and beautiful collection of souls.

Second, let’s identify the gap. What I mean by the gap is that people with disabilities are virtually left out of mainstream cultural discussions about sexuality and beauty. This might seem like a small omission, but it is not. According to the US Census Bureau, nearly one in 5 people in America has a disability – 19%. Just think about it for a second – how many times can you recall movies or books or magazines or advertisements portraying a person with a disability as a love interest or in a romantic relationship or as beautiful? Likely not many, and certainly not 19% of the time!

There are reasons for the omission in our culture. First of all, our country has historically propagated the view that people with disabilities are “defective” and “unfit to raise families”… Eugenics programs were legal in 33 states as recently as 1956, and forced sterilization of people with mental or psychiatric disabilities still exists today. These practices obviously negate the reproductive and sexual freedom of people with disabilities and likely have farreaching effects on our national psychology.

For example, often people with disabilities are viewed as “eternal children” because of their need for extra care; I can’t tell you how often I get called “sweetie” or talked to like I am 10 years old. People with disabilities are also seen as “asexual”, in part because it’s hard for people to picture someone with a disability partaking in a physical act like having sex. These beliefs are certainly not true, but they are ingrained in our culture and not questioned nearly as often as they should be. Instead of addressing the sexuality of people with disabilities, we are preconditioned to ignore it – pretending that it just doesn’t exist.

On a personal level, I felt left out of the mainstream sex and beauty culture from a very young age. When all my friends were getting asked out to our first “school dance” in 5th grade, I received no offers. In fact, the boy I eventually asked myself (I have always preferred taking matters into my own hands) said no, because he “just thought of me as a friend”. This terrible line would follow me for the next twelve years or so… Every time I thought maybe I’d found a boy who returned the romantic feelings I had, I was rebuffed with the “Friend Clause”. Whether or not that was actually true in all cases, or if the boys just couldn’t admit they had feelings for a girl in a wheelchair, is up for debate. Either way, it sucked. Loneliness & despair were frequent visitors to my angst-ridden teenage heart.

The other problem facing a girl in a wheelchair with bendy arms is that there is virtually NO ONE depicting your body type as beautiful in this culture. The standard of beauty in America is arguably tall, thin, busty and blonde — I was about as far from that standard as possible! Luckily I had pretty healthy self-esteem overall so actually I never developed a hatred of my body, but I must admit I didn’t have a lot of hope that someone else would eventually find me to be physically attractive. I wanted to date, to marry, and to have kids, but my chances seemed slim to none. This kept me up a lot at night. As it turns out, my fears were not completely unfounded: according to research done by Thomas Gerschick in 2002, women are four times as likely as men to divorce after developing a disability, and only one-third to one-fourth as likely to marry [as men].”

Luckily I had awesome parents that gave me some good advice while I was sitting on the sidelines of love. First, my Dad told me that most boys are idiots until at least age 25. He said to give it time, and that eventually someone would love me for me. I didn’t really believe him, but I tried to tell myself this anyway as a coping mechanism. I was only 18, so I still had a few years until I’d have to call his theory into question.

My mom had another helpful tip. She said two of the coolest ladies she knew didn’t get married until they were in their 40’s – but that instead of letting their singleness bother them, they focused on doing things they thought were fun and interesting – expanding their horizons and creating some awesome stories in the meantime. Then, by the time they did meet their “Mr. Rights”, they were great catches because they were some of the most interesting people you could talk to… Their partners loved them for their depth – that’s part of what made them beautiful.

This gave me a sort of mission – a way to be proactive about dating even if I wasn’t dating – by focusing my energies on expanding my horizons. So I did a lot of cool things – I joined a disability rights group and played music and hung out with friends and got involved in organic farming and politics. Maybe my motives for being so involved were a little questionable, but it was certainly better than sitting around and moping about my singleness. I was becoming confident in my self-worth, but I still felt pretty conflicted about issues of sex and beauty and love. I remained unsure about whether I could ever be viewed as beautiful or find someone who loved me, wheelchair and bendy arms and all.

It was around this time, during my fourth year in college, that I had an epiphany. A mind-blowing epiphany. I was taking a class called Political Theory and I had to write a paper about a book by a guy named Marcuse. He wrote all about this concept called Eros – which basically means sexual and creative energy. Marcuse and other theorists have argued that sexuality has been usurped by capitalism… That one of the reasons the media created these ridiculously unattainable standards of beauty is so that people would feel bad about themselves and buy whatever product would “fix” them and help them to better fit the mold of beautiful.

You must admit, these theorists were onto something. People buy cold cream to mask their wrinkles and pay for expensive workout videos to lose that “stubborn last 10 pounds.” In some dark and secret recess of their brain they have bought the idea that maybe, just maybe, if they work hard enough and buy the right things or wear the right clothes, they too can be “beautiful”. But what they don’t acknowledge, at least in the deepest sense, is that they are being scammed. These images staring back at us from the magazines aren’t real – they are airbrushed and often depicting women who are malnourished and 21 years old. And you, my friend are a real person who probably eats normal amounts of food and will also eventually be 45 years old…. Hopefully even 85!

Where does that leave you? These ideals cannot usually be achieved at all, and if they can it is for but a moment in youth. There is a serious disconnect between the media’s image of beauty and actual human biology. If you really think about it, the traditional standard of beauty in this country is a terrible standard by which to measure oneself.

And that’s when a lightning bolt struck my brain! All these years during my childhood I had wished to be “beautiful” like the images I saw in the media – but I knew that realistically it was never going to happen. No amount of cold cream would un-bend my arms and no cool clothing would cover up my wheelchair. Somewhere in my six years of college, I had lost my interest in fashion and make-up and weight – because I figured I was hopelessly doomed in these realms anyway. But what I had failed to realize until this moment was this… all along I was free!

I didn’t need to obsess about my weight because it didn’t apply to me. I didn’t need to obsess about my hair because I didn’t apply to me. I didn’t need to obsess about my makeup or clothes or anything else, for that matter, because it didn’t apply to me. As far as beauty was concerned, I was invisible. But in an odd way, being invisible was far preferable to being scrutinized.

When I realized that I was essentially free, cast aside in the wild frontier of unacknowledged sexuality, things began to change for me. It’s not that I ceased to care how I looked altogether or that I stopped showering. It just meant that I realized that I had the power to choose what mattered to me. For example, I decided to stop shaving my legs and my armpits. If men don’t have to do it, why do I? I also stopped wearing shoes and socks – I don’t walk and they are uncomfortable and never fit right – so why spend money on them? I also opted for all dresses instead of pants and shirts – dresses were more comfortable and allowed me to dress myself and increased my independence (and they are prettier, duh).

But defining my own beauty standards didn’t just allow me to let things go that didn’t serve me. It allowed me to hone in on the things that actually make me feel good, like bright colored dresses, sparkly jewelry and purses. I don’t look for brand name items, because again, this doesn’t personally enhance my own sense of beauty. Anything colorful and flowy fits the bill. And while I don’t often wear make-up or perfume anymore, I still do when I perform because it makes me feel fancy, and I like feeling fancy at shows. Claiming my own sense of beauty made me feel more beautiful and attractive, on a very real level.

But this newfound freedom extended beyond the more superficial things like clothes and make-up and external appearance. It also helped me to realize that I am indeed a being capable and worthy of giving and receiving love. It gave me the courage to have honest conversations with my would-be husband when we first met about what society might think of our relationship. It renewed my conviction that the biggest reason people in our society reject the concept of sexuality for people with disabilities is because they simply never see it.

Since my husband does not have a disability and mine is quite obvious, I knew that we might face some awkward questions, misunderstandings, and perhaps even disdain… And we did from some. After all, Paul has to help me with a lot of things that most couples won’t have to do for each other until they are quite old. Our relationship sometimes functions differently than our peers’ for this reason. But in time the people close to us came to understand that our relationship is built on the same foundation as anyone’s: love, trust, respect, and friendship. I am still convinced that the more society sees people with disabilities in romantic relationships, the more they will realize it is “normal”. That love truly does transcend physical disability. But without a sense of personal freedom from societal standards, I think I would have encountered a lot more self-doubt and insecurity in the early days of our relationship. Not to say these demons never reared their heads, but overall the two of us were able to forge a relationship that was very open, honest, authentic and unique because we knew we couldn’t compare ourselves to most other couples our age and so we didn’t even try.

On an even broader sense, freedom from sexual and beauty standards of modern capitalism birthed a new sense of self-confidence – the confidence that indeed I could be myself and everything would be ok. That I could follow my dreams and respond to challenges and others with authenticity. If standards of beauty are generally imposed on us by society, then it follows that most other standards are just that – impositions. We truly do have the freedom to follow our hearts.

I think this is partly why I have been able to do things like perform my own songs in front of people even when it’s scary. I think it’s why I left my day job selling insurance to start teaching fiddle lessons, a job that more aligned with my sense of self. I also think it’s why my husband and I were willing, excited even, to sell our house and try touring with music full time after I won the Tiny Desk Contest. If you aren’t traditional in the first place – if you’re already living in the gap – then why not live big? Why not follow your heart and your dreams as far as they will take you?

So what does my college epiphany have to do with you? Well, my friend, it means that you too, have the right to be free from the sexual and beauty standards of this society. How does this make you feel? Excited? Scared? Happy? Relieved? I would encourage you to take some time in the coming days to reflect on your own relationship to societal pressures around sexuality and beauty and the idea of “fitting in” generally. Because you can free yourself from the anxiety and oppression of pursuing these standards. It might take time. It might mean extracting yourself from unfulfilling and unhealthy relationships, it might mean redefining your boundaries. It might take therapy, it might take journaling or creating art, it might take a haircut. But the truth is, ultimately you are not required to be anyone but yourself.

Once you have come to terms with the fact that you are indeed free from society’s false standards of beauty and sexuality, you can begin focus on the things that make you feel good. You can pursue interests that really matter to your identity and cultivate the kinds of relationships that you find meaningful. You can do anything.

Please remember that you are beautiful and deserving of love regardless of your appearance or race or sexual orientation or economic situation. You matter, even if society makes you feel invisible. The real task before you is not fitting into a mold, but acting from a place of authenticity and love. May you live with courage & conviction in your full personhood; may you set an example for others to follow.

Paul and I have been on the road touring full-time for the past 6 months now – I have performed and/or spoken at 125 events since October and we’ve traveled to over half the US states so far… 34 is the current total, to be exact!

I feel so grateful for all the beautiful landscapes we have seen, the experiences we have had, and the wonderful people we have met along our journey. I have played at a wide variety of venues, from intimate coffee shops to packed clubs to elementary schools to disability rights organizations. Each event has been memorable, fun and rewarding in some way. I am so glad that I have been able to take this journey with the man who I love and care about so deeply, my husband Paul. It has been a dream come true for us to travel around the country (and the world!) together.

I knew this year was going to be a big transition and that I might not fully digest everything right away. I’m sure I am still processing it as we speak… I mean, Paul and I left our jobs, sold the house, bought a van, and basically said goodbye to our life as we knew it. So my brain probably has some catching up to do!

The past 6 months have been extremely fulfilling, exciting, tedious, frustrating, exhausting, scary, touching, and fun. There seems to be no middle ground on the road – it’s a constant roller-coaster. You’re working so hard and sometimes it seems like you can’t catch up or take a break… but then you remember that you’re working for yourself and your art and the people who support you – and that makes it all worth it. Paul and I both agreed awhile back that even though touring is a grind, we feel like the positives far outweigh the negatives. So as long as that is the case, we will keep going.

I thought that the lessons of the road would hit me sooner, like a ton of bricks, in the form of some grand epiphany about music or travel or marriage or the nature of life. But truthfully, we have been so busy that I haven’t had a lot of time for pondering. It seems the last 6 months were more for action and receiving information – and that all my processing must have been happening underground, in my subconscious.

Just this week, a theme of our tour slowly began to surface in my mind – about community and the arts community in particular. Looking back, the most remarkable thing I have witnessed again and again during these 6 months is the absolute kindness and generosity of people in the music community – both from the artists themselves and those who support creative types.

I think about Martin Atkins, one of the first people I met after the Tiny Desk Contest, who freely offered up his hard-won knowledge to us touring newbies and proceeded to facilitate two of the most memorable performances of my career to date – the CD Baby Conference and the Pigface 25th Anniversary Reunion Show – in his home base of Chicago.

I think about Warren Defever from His Name is Alive, who graciously opened for me at my show in Detroit and then let us crash at his apartment. He probably doesn’t know this, but the conversation we had over a cup of coffee the next morning provided me with a sense of clarity about what I want to do in my future recordings and I often find myself replaying his words in my head.

I think about Alan Sparhawk, who took me under his wing in our duo The Murder of Crows 6 years ago and introduced me to the looping pedal and played beside me as I sang my first-ever original song in public – and in addition to all of those tremendously meaningful contributions – who invited me to open for Low in Ireland during my first tour overseas in December. He didn’t have to do any of these things, but because of his kindness my world has been permanently altered. I am so grateful for him.

I think about Bob Boilen, whose voice I found on the other end of the line on February 26th, 2016 when I received a call from NPR telling me I had won the Tiny Desk Contest. After getting to know him better in the past year I can say that he is truly motivated by his love of music and that he genuinely cares about nurturing, supporting and guiding artists along their journeys. I had half-expected our paths to disconnect after my series of shows with NPR ended last May, but he has done a beautiful job of keeping in touch and popping in, not unlike Gandalf from Lord of the Rings, always bringing with him a boost of encouragement.

These pivotal moments clearly stand out to me, but what is most remarkable is that we have been on the receiving end of kindness and generosity from so, so many people during our tour… There’s no way I could write about all the goodness we have seen over the past six months.

As a touring musician, every single day you meet people who want to see you succeed and are more than happy to help you if they are able. People have opened up their homes to us as a place to rest or as a house concert venue. People have helped us spread the word about our tour dates, helped set up new shows, and sent me recommendations of future places to play. And this Fall, 142 people amazingly contributed $8,000 to our GoFundMe campaign so that Paul and Leah and I could tour in Europe. Some people stick around after shows to share a meal and others send their encouragement over the internet. Musicians and promoters and other road warriors have shared their stories and tremendously useful life lessons with us freely, helping us to learn more about this new life we find ourselves navigating.

We absolutely wouldn’t be where we are today if it weren’t for the support and positive energy and kindness of others. We have made friends in so many cities… the world seems much smaller and a bit less scary than it did when we first started this journey.

If all I learned from the last six months was to be grateful, I would be content with that. After all, I truly believe that gratitude is the seed of happiness.

But the more I ponder the kindness we’ve witnessed, the more I realize that there is another lesson to be learned beneath it all. And the lesson is this – we all rise together or we all sink together. So it is our task to help each other rise.

I think in my past, I was unwittingly fed a lie that only a select few “make it” in music and so everyone has to fend for themselves. I bought into the idea of scarcity without ever really admitting it. Sometimes I felt like I was fighting an uphill battle against all the other musicians out there. In my mind, we had to metaphorically duke it out over a limited number of fans who would either attend our show that night or go to someone else’s… The victor was the band with the biggest crowd.

In this unhealthy state I would sometimes find myself fighting off emotions like jealousy and impatience and entitlement. I am not proud of these feelings, but in my darker moments they were definitely real. I have always enjoyed playing, but competitive thoughts like these were a sure-fire way to suffocate that joy.

Now it is 100% true that the Tiny Desk Contest was a huge boon and I would be naive to think that it didn’t alter my musical path dramatically. But nonetheless, a lot of the artists I have met on the road this year didn’t get that kind of a lucky break. Instead they made the choice to start playing out, then they started touring, and over the years they built up their career piece by piece.

Regardless of how anyone got started touring, the people I most respect and enjoy spending time with on the road are not tripped up by the idea of competition. Instead, what I discovered was this beautiful network of individuals who are not sizing each other up, but are in fact helping each other out whenever possible – giving tips on venues or playing shows together or offering up a place to stay or helping to plan a show in their hometown or even just grabbing a beer together and trading stories at the end of the night. It seems one of the greatest joys of being a touring musician is connecting with other artists — indeed, other people in general! It’s truly about connection.

When artists support each other, build each other up, truly care for each other and root for each other’s success, we all do better. None of us do well if the arts are not valued or if the community is stale, insular, or stagnant. People are drawn to art precisely because it is vibrant, expansive and evolving. Promoting the arts in general not only helps every artist do better, but also has a more lasting impact than just our own fleeting success. When we realize this truth our focus changes and the whole world feels a little lighter. When we connect our art to a message that has a greater purpose, such as raising awareness or funds for a social justice movement, that light joins forces with determination and altruism. When we remember that we are interconnected to all of humanity, our main goal in life becomes love and not outward measures of success. In the broadest sense possible, we all rise together.

Just as I have received so much wonderful advice and kindness on the road, I want to be an ally and a helper and a source of encouragement to other artists I meet along the way. If this realization seems blatantly obvious to you, have compassion on me. We are just starting out on this touring journey and it’s a steep learning curve. I know we still have a lot to discover and that my views will continue to evolve… But I am so grateful for what we have witnessed so far. The world is complicated to be sure, but there is light in the darkness. And we can bring that light to each other with compassion, altruism and a desire to see each other succeed. We can and do rise together.

I must admit, today’s Inauguration is leaving me in a weird head space. But I don’t think engaging in an online political debate or reading another news article is going to do my mental health or the state of the world any good at this point. So I’m left pondering – what should I be focusing on today? The best answer I could come up with so far is this: I am going to try to focus on my Circle of Influence – the things I can control. I didn’t invent this idea… it’s from from Stephen Covey’s “The 7 Habits of Highly Effective People”. I posted an excerpt of his book below.

I can’t control the 45th President… in fact, I can’t control anyone else but myself. I can control the words I say, the food I put into my body, the ways in which I choose to get involved in advocacy or politics. I can control the music I make and the thoughts I put to paper. But I can’t control what other people say or think or do, and I can’t see into the future. So for now I will have to set these concerns aside and re-focus on making the my own corner world a better place, from the inside out. We never truly know what ripples our actions might have on the bigger picture… Let’s see where this kind of focus takes us as we move into a new era. Peace be with you, everyone. ♥

“All of us have a wide range of concerns in our lives – our housing, our health, our friends and family, the environment, world politics, the price of a pint of beer…

Within this whole universe of our concerns, there are some things we can influence and some things we can only stay concerned about. Now we have a choice about where we focus our attention and energy. We can choose to focus all our attention on the area that is outside our influence. We can get annoyed about the shortcomings of other people, we can blame the government, global capitalism, the weather, a rotten childhood, bad luck, or fluoride in toothpaste. This focus leads to more and more blaming and accusing, to feelings of victimization, ‘poor me’. This negative way of thinking, accompanied by inaction to change things, results in the circle of influence shrinking.

Alternatively we can choose to focus on things that we can influence. This does not mean just the more immediate or ‘trivial’ concerns. It might mean focusing on those aspects of really huge problems that we can exert some influence over. And ‘influence’ does not mean direct ‘control’; we can influence things in an indirect way, for example in our own personal, daily behaviour. By focusing attention and energy on our circle of influence, we become increasingly proactive. The energy we expend is enlarging; each little victory motivates us to find new ways of exerting influence. We don’t waste energy on things we can do nothing about, but direct it towards what we can change. With each step we feel stronger and more creative. And so our circle of influence expands.

It often happens that, in widening our circle of influence, we also widen our circle of concern. It becomes worth caring about some of the really challenging things in our world if we learn we can influence them. It can be incredibly liberating to realise that, in choosing how to respond to circumstances, we affect those circumstances.”

– Excerpt from Stephen Covey’s “The 7 Habits of Highly Effective People” (1989)

On May 6th, 2013 I very nervously taught my first fiddle lesson to my friend Robin. And now, after over 3 years and 50 students, I am taking a hiatus of undetermined length to embark on a new touring adventure with my husband Paul. I am sure I’ll be back to teaching someday (because I love it), but for now life has laid out a different path that includes performance and public speaking and living more or less on the road. 🙂 This transition is exciting but extremely bittersweet.

As I teach my last week of lessons, the reality of leaving my students is beginning to sink in… Next week I’ll be packing up the studio and moving on to another musical journey. It’s been so hard to say goodbye to the children and adults who have become regular fixtures in my life.

Teaching music was the first job that felt completely “right” to me, Connecting with my students and watching them learn and improve has been extremely rewarding. It was both challenging and excititng to explain musical concepts and encourage growth while still fostering a joy for music in my students. Teaching is a skill that would take many lifetimes to perfect, but these last three years felt like a good start!

My students are complete joys. Over the years my students and their families have become friends. They have given me the priceless gifts of laughter and kindness and inspiration. I am so grateful to have been involved in their violin journeys and I am excited to see what they do in the future. I will definitely miss them, although I am determined to keep in touch!

To my students: I love each of you very much and I am so grateful for the honor of working with you over the last three years. Thank you for being you – the world is a better place because of it! I will forever cherish our time together and I hope we will be able to stay connected in new ways as we write the next chapters of our lives. ❤

Love,
Gaelynn Lea

So I’ve been thinking… The last four months have been amazing and exciting and humbling and terrifying… But mostly they’ve felt like a mysterious unfolding. Music seems to be the calling that I never planned on but have been so grateful to discover, bit by bit, in this lifetime. NPR Music’s ‪Tiny Desk Contest and the adventures that ensued still seem surreal. I feel incredibly blessed that I had the opportunity to share my music with people across the country in a way I never anticipated before.

Lately I’ve been reading the book called “The Art of Work” by Jeff Goins and he describes finding your calling as a “lifetime of fear-facing”. How beautiful is that? Just because something makes us nervous or afraid doesn’t mean that we’re not cut out for it. Music has continually pushed me right up to the edge of fear, and every time it does and I somehow survive, I feel myself grow as an artist and a person… But I still get scared, and often. I have very slowly begun to make peace with that fear.

I guess what I’m trying to say is that it’s OK to admit that we are human and that we often feel afraid and like we’re in over our heads… That’s all part of the journey. So whatever good thing it is you long to do, find a way to make it happen despite the unknown or your fears… The world needs your light and your passion and your goodness. Cheers to finding your calling and chasing after it!