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.