Tag Archive: love


Recently a Canadian press asked me to write about what I would tell my teenage self about sexuality for an anthology for radical teens. I expanded what I wrote here to avoid copy-write issues and explain more lessons I wish I could tell my teenage self. Enjoy… :)

As a disabled sexologist, looking back on my teenage years I, like many folks undoubtedly, wish I had the chance to go say a few things to myself.  Perhaps had I had the chance to read this or hear this story, I could have many avoided years of self-hatred and emotional turmoil from feeling lack of desirability and the belief that would never change.

I was born with a congenital disability that makes my bones brittle. In my 31 years of living, I’ve had over 60 fractures and 16 surgeries. With all the fractures and surgeries, I spent much of my young life isolated in bed healing from injuries, amounting to at the very least 7-10 years of life alone in bed healing. That created a huge gap in my socialization process and my educational experience. When I was 15 years old, I had a surgery that took me well over six months to heal from. I was incredibly depressed, even when my friends would come visit me. They told me stories of going to parties and out on dates. I didn’t get to experience any of that until my late teens, due to healing from injuries, an overprotective mother and friends who really didn’t want their disabled friend tagging along to “cool” parties.

Naturally, I had to find something to do with my time, so I escaped into the land of fiction – in books, television and movies. For years, I considered those images to reflect reality – and none of those images included people like me. I knew all the stories about the guy getting the girl in the end, even the supposed ugly duckling (who I thought I would be) would end up happily with a man. I had my heart set on living that fiction, yet wondered how I could possibly do so in the body I am in. I would often ask my mother would I ever fall in love and would I ever sex. She assured me some wonderful man would, at some point in the far off future, be able to see past my disability and see me as attractive and brilliant. I didn’t know then that it is absolutely ridiculous and ableist (oppression of disabled people and the production of normalcy) to suggest someone would see past what would become a core part of me.

If I could go back and counter the dialog my mothers and all the fiction I consumed taught me, I would tell me a few sexual truths. The truths that media conceals with its over-sexualization of everything and its overemphasis on a body beautiful standard that most people cannot live up to. I would explain that sexuality is not just sexual activity, and it certainly is not just heterosexual penetrative sex. Sexuality is intertwined in our whole personhood, it is an experience we have for a lifetime (or as sexologists often like to say “sexuality is a womb to tomb experience”) and something that can be celebrated. To feel sexual urges and want to explore your body at a young or old age is perfectly typical. Sexual expression is a spectrum: we all do not express it the same – so we may have different tastes, those tastes may change over time, and some of us may never want to have sex.

From an early age, I had a strong fascination with sex. I was mocked by my step-father for staring with wonder at sexual scenes in movies. He suggested I was perverted to want to see what sex entailed at the age of 10. Despite the shame I felt because of his comments and religious teachings I learned regarding sexuality, I thankfully discovered the delight of masturbation at 11 years old.  It was a great outlet for my bent up sexual energy that had no other outlet. At that age I tried to express interest in boys and girls and it remained unrequited. If I could tell my young masturbating self a few things, it would be to breathe more (to enhance pleasure and elongate the experience of climax), that I was not going against God by pleasing myself, and I was actually teaching myself a lot about my body. I now teach my students – of all abilities – that exploring your body is one of the best ways to know what you want when/if you decide you want to engage in sexual activities with others or yourself.

Another big lesson I would tell myself is that sexuality is a human right that EVRERYONE is worthy of and EVERYONE can find someone to be interested in them. This may sound like a lie, I would have thought it was a lie, but it really is true. Developing or enhancing sexual self-esteem can be enabled through many means; radicalizing disability really helped me. I found disabled friends, learned that disability was not my fault – or my tragedy – it is political. I was supported by my father, who arguably pushed me very hard to develop my personhood and sexuality. There were moments in my mid-to-late teens that we would go to concerts and he would encourage me to hit on people. It was terrifying to try but those moments proved to be excellent learning experiences (and stories to tell later in life).

I would also explain to my teen self, that all the sexual attraction can be real. When I came home from middle school and junior high talking about crushes on boys and girls, my mother explained the feelings for the boys were real but I really just wanted to be like those girls. I believed her for years not knowing her rationale was ableist and relied on my internalized ableist notions of wanting to nondisabled that made me believe that crap. When my father told me that I was gay when I was 16 years old, I was baffled yet felt like something finally fell into place. All of those crushes and attendant feelings finally were unveiled as real.

Because I didn’t know that sexuality was a spectrum, I bounced between what I thought to be the only sexual categories – heterosexual and gay. Through the bouncing, I experienced different folks with many types of strokes. Growing up with an OB-GYN nurse as a mom kept me safe(r), as I used condoms, lube and gloves throughout my sexual life. Though I tried many types of people, sometimes sex just was not hot or even satisfying (and yes I faked an orgasm or two). Sounds terrible but if you try different types of people through the years, some fit better than others.

I would also let me know that the sometimes scary and saddening sexual trajectory I hit hit when I moved to college would help me figure out more about myself. Even with my father and new college peers coaching me, I was a terrible wreck at trying to date or arouse attraction. Despite really emphatic efforts to be like my nondisabled peers, I couldn’t do it. I tried my damndest to drink as much and bring home guys from bars. Most often I would leave clubs alone and upset because I wasn’t even getting looked at. I had a few really rough semesters when I moved away. In the spring of my first year in college, my roommates and I hosted a party in which I was, again, sexually ignored. I got so frustrated that I took several pills, chased them with liquor and hoped I wouldn’t wake up. I didn’t want to be invisible anymore.

Looking back, I realize how grateful I am that I was not successful in not waking up. It would have been a truly sad waste of life; because I grew from the experience and only months later I knew I would never, ever want to sleep with anyone at the party. I’m grateful I made it through the pain alive because it has allowed me to see how important it is to talk about sexuality. I know feelings of shame and suicidal ideations regarding lack of desirability are not unique to me, and that we can work to change these social structures.

My closing sexual lesson is that experiencing love and sex are on-going processes. I’m still learning who I am, how to give and receive pleasure, and how to love myself and others. After gaining some sexual self-esteem through many fumbles, I started to understand what I really wanted and I began hunting for it. Certainly, this method does not work for some and many find it off-putting, but it worked often for me. More subtle approaches that are recommended by my less aggressive friends include meeting people with similar interests and building friendships into something more. Additionally, online dating websites are increasingly wonderful ways to meet people and their minds, not just their bodies. I found that to be an awesome modality through the years. After years of searching for someone who fit me, it turned out that it was me that needed to get to the stage of wanting to settle down. When I realized that I was ready for love, I spent awhile asking the universe for exactly what I wanted in a partner: intellectual and physical stimulation, the ability to make me giggle (and be ok with my giggling) and a true love for ranting. This happened only three years ago, when a friend helped me write a Craig’s-List (a free online source for various activities, including dating and casual hook-ups) explaining what I wanted in a partner. My now wife’s best friend found the ad and pushed her to respond to me. We consider our first date our anniversary. I knew within weeks, she was the one I wanted and I’m terribly grateful to the universe for allowing our friends and the internet to bring us together.

Even though I’m now with someone I truly adore, the internalized ableism I struggled with during my teen years remain. There are still days when I wonder – and ask – why she would want me and not a nondisabled person. Those moments of my depressed teenage life have not left, the feelings exist in my marrow (to borrow from Eli Clare), but there are now more and more moments that I can look at myself and see how sexy I am. I can often see why she loves me and may even think I’m a catch. That lesson would blow my teenage brain apart and even though I can’t tell young Bethany this, my eyes welled up with tears as I typed knowing that I made it through, I have faith others will too and I hope more of us share our stories with people that need to read and hear them.

Krip Hop Nation in ATL and other events like it (such as the DaDa Fest in England next month) subvert the traditional model of disability awareness by encouraging people in the crowd to acknowledge and even *gasp* celebrate disability culture. Part of the beauty of Krip Hop is that interweaves exposing the truth about negotiating the disability experience – stigma, love, desire… really everything  – with kick ass art and beats. Throughout the day the artists and panelists revealed raw emotions and a spectrum of analyses about disability.  Some of the comments expressed by the panelists and artists were not in line with my philosophy of disability, but I am working on seeing the value in the diversity of our voices. It is more honest to have variability of voices and understandings of disability rather than having a monolithic representation of disability – even if that monolith is reflective of my sexy understanding of disability.

Much of the content was emotionally and spiritually intense. I shared many of the feelings expressed about struggling to figure out ways to love my disabled body in a culture that devalues us.  I loved hearing stories of journeying to self love. Our community so rarely takes up this conversation. We speak of disability pride and political resistance– but we don’t talk about how we have to figure out ways to embrace our krip beauty and really come to a state of love. That missing dialog around love is so needed. I challenge all of us in the disability realm – disabled folks, our families, friends, etc. – to examine whether we are following dominant disability discourse by trying to “look beyond disability” to love the person or if we can have, even just brief moments, love of the whole package. Can YOU say I love disability? Maybe we need to practice together or privately in the mirror – saying I love THIS (my/your) krippy body, mind, sensory system, etc. I try to do this and certainly does not work every day. Sometimes the weathering of ableism and other isms that mandate perfection, just make it too difficult to look in the mirror and like what I see. I’ve said it before that is also difficult to hear from my partner that she sees me as beautiful and loves all of me – when I don’t. Clearly, this is an area to work on – for me and I bet for you. Let’s try to talk about this more.

The idea of loving disability and celebrating our culture causes cognitive dissonance in most people, including many disabled folks. Many seem quite hostile to the idea that disabled people can come to a place of self-love. In fact, the idea that a disabled person could love themselves is framed as delusional too many; which is in line with a guiding disability principle in our culture – we should all want to be able-bodied or assimilate into normalcy as much as possible (i.e. compulsory able-bodiedness).

This is why moments where we can have honest expressions and celebrations of disability culture – in its many forms – are so valuable to disabled people and society generally. I know many of the disabled people there really valued the moment to just breathe in KripLove and to celebrate us. The profound feeling of commonality in our experiences of difference really helped crystallize the growing feeling I have of love for my community. The after party only added to my growing KripLove, as it was a small collective of the artists and a few friends who get disability. The space we had is much like what bell hooks describes in “Loving Blackness as a Form of Political Resistance” in Killing Rage: Ending Racism – a place of emotional refuge where no one had to ask for access, hide attempts at making space easier for our navigation or explain disability basics. We could be ourselves. It was not perfect because we human and still managed to say some offensive things – but it felt really nice and cozy to curl up in a pile of KripLove! It was a perfect way to ring my 30th birthday. It’s so refreshing and recharging to be in that space after weathering the ableist world.

Group of Krip Friends: Robin, me, Keith, Ryan and Leroy in a loving pile on a couch

KripLove Pile!

The following day I spent many hours feeling KripLove surging through my body. I cried tears of joy, as I went over the event in my head and looked through our photos. This was much like the feeling I got from hosting the disability and sexuality conference at UF in 2005 – an overwhelming feeling of peace, as though I achieved something that I was supposed to do. For the UF conference, I glowed for about a week over a job well done – a well-attended event that was profound because it explored KripSex, an issue still rarely spoken of.

This time around my joy was cut a bit short through challenges of language at the event and critiques on ways it could have been better. Maybe my skin was thicker when I was younger – because I thrived on the editorials written about how awful I was for hosting a “freak show” with an adult film star talking about disability issues – or maybe it all just means more to me now to have people really feel the message I’m trying to share about disability.

I want people to get what I am doing – trying to shift social conception around disability. I want people to be liberated from the shackles of disability oppression, because it’s not just me and my krip siblings that hurt from these ideas of bodily, intellectual and sensory perfection – it’s all of us. Disability liberation is CENTRAL TO ALL of our liberation. That is what I want people to understand: this revolution of love, especially of the Krip flavor, is for everyone. I say this because if we all really LOVED DISABILITY – just imagine what cultural doors that would open (and be wide enough, with ramps, braille notations, lights, etc.) around our collective interpretation of the meaning of bodies. This could be a huge title wave of relief for so many people who hate our bodies because our culture teaches we shouldn’t or we can’t. Dream and talk about the possibilities of this with your comrades.

I recently came across this video clip from the National Geographic television show Taboo.

In it a seemingly cool guy with one of my favorite disabilities (arthogryposis) talks about using government subsidized services of a sex worker to satiate his sexual desires.  The clip raises critical sexual justice issues – specifically that society tends to view disabled people as asexual or otherwise not sexually worthy and that parents often reify those sentiments by sheltering their disabled children.

Though I consider myself to be a pro-sex feminist, I find this sort of public policy and media representation problematic for disabled people for reasons I will explore in a moment.  My pro-sex values include the belief that sexual expression and sexuality education are human rights.  I also firmly believe in the value of pornography and sex work. In fact, before I moved to San Francisco to procure a masters degree in Sexuality Studies, I anticipated focusing my thesis on a theory I labeled “pro-sex disabled feminism.”  The theory adds disability to pro-sex feminist arguments – which assert that pornography can be socially ameliorative because we all can benefit from learning from and masturbating to pornography and that sex work should be embraced and legalized to protect the rights of sex workers, as well as clients.  Pro-sex disabled feminism then argues that disabled people can benefit from watching pornography and utilizing sex work services.  I believed that this theory could be a catalyst for a real revolution between the legs and ears of the masses.

I moved away from the topic because I found something more interesting to focus on and I started to problematize policy promulgating sex work for disabled people.  Learning about the government subsidized sex work program in the Netherlands and the fight for one in Denmark makes me increasingly irked by the concept of government funded sex work.

While many disabled people are economically ghettoized, the framing of policy like this reinforces the charitable model of disability by implicating that disabled people are sexually-deprived.  It supports the already pervasive claim that disabled people are not sexually worthy and thereby must seek out the services of a professional, because few, if any, would voluntarily have sex with us.

I internalized and believed this cripsex myth for a number of years and hated myself because of it.  As a sexually frustrated teen, I felt undesirable and believed I might die a virgin.  I assumed everyone in my peer group was having sex and that I was subhuman because I was not.  This primal cry for sexual satisfaction lingers in me and fuels my work in sexuality today.  Many disabled people are sexually excluded and this is something everyone needs to confront. As one of my cripsex colleagues Russell Shuttleworth explained that “When you are growing up in a cultural context that is highly sexualised and you don’t see any models for yourself in terms of being seen as sexy, it can build barriers inside yourself.”  If this was the topic of shows like Taboo – rather than policy solutions such as condescendingly throwing sex workers at us – the disability community would be better served.

While these state funded programs are problematic, they are worth the risk to embrace to assert the human rights of both disabled people and sex workers.  When polices are in place that prevent sexual expression of disabled people, we fall into the pervasive trap of the façade of benevolence in over-protection. This is like the truly oppressive and offensive proposed piece of legislation in Massachusetts which would make the possession of erotic imagery of elders and disabled people a crime – analogous to the possession of child pornography.  Underpinning this proposed law is that disabled people have no agency or ability to consent to being represented as erotic and somehow need government intervention to mediate our pathetic lives.

Anti-agency arguments are also used to “protect” sex workers; such as the one deployed by a woman interviewed in the Taboo clip.  She explains sex work is inherently abusive and non-egalitarian. The problem with her statement, those made by many anti-pornography scholars, and in laws like the one proposed in Massachusetts is the assumption that people cannot consent to sexual activity because of unequal social constructs.  In this line of thought, sex workers cannot consent in a patriarchal society in which women are not paid or treated equal to men and disabled people cannot consent to sexual behavior because we are vulnerable.  Plenty of sex workers are vocal and mobilized to express the contrary – i.e. they have the right to work in their chosen field.  Similarly, disabled people are increasingly telling their stories of the need for sexuality.

While I do not completely embrace subsidies for sex work for disabled people or the media representation thereof, I do think they assert the truth that all people need and deserve mutually satisfying sexual pleasure. If policy-makers are to engage in this topic in a just way – I encourage following the Australian model, in which brothels are made accessible and sex workers collaborate with disabled people to meet their needs360 Documentaries did a good piece on this subject.

Beyond simply the need for sexual pleasure, what is lost in these tired paternalistic debates about pornography and sex work – is disabled people finding agency to have intimacy in addition to sexual pleasure.  Sexual agency then does not just concern sexual activity; it includes the right to intimacy, relationships and love.  These are human rights.  And despite what countless sources argue, disabled people are human enough for human rights.

In sum, please a crip, don’t tease a crip!  Happy Valentine’s Day.

I began writing this post about a month into the healing process from a fractured femur; now my leg is nearly healed. This healing process has been a really interesting journey, largely because it is the first time I have done so while in a relationship. Being with my love during this injury has provoked a flood of intense emotions and thoughts about the meaning and value of my body. Many of these have thus far been unexplored, or at least not owned up to, despite this being a relatively decent fracture out of the 60 or so I have had thus far (stemming from my disability, osteogenesis imperfecta, otherwise known as brittle bones).

Though I have worked for nearly a decade on forging a radical disability identity through engaging with disability activism, culture and studies, I continue to grapple emotionally and psychologically with the disconnect between disability positive tenets and my view of my body. This disconnect has become all the more apparent during this injury.

Injuries take away much of my independence and render many tasks the responsibility of those around me. During this injury, my love has taken on nearly all of the cleaning, cooking, laundry, etc. This should be a welcomed break from the drudgery of domestic life but it is not. I hate it. It makes me question how valuable I am as a person because I cannot give to her the way I feel I should. I know to critique this idea of “should” – but even with the social criticism of the implicit value of this statement, I still feel frustrated and saddened by my inability to perform even the most menial tasks.

Even though it goes against crip political values to admit this, I sometimes struggle to maintain a disability positive attitude. In an injured state I feel I appear vulnerable or unable and I hate this. I hate showing this side of me, even to the one who I want to share all of myself with, regardless of how real it is or how much disability is a part of me. It is at these moments that I internalize a lot of disdain and sadness; reminiscent of my adolescence.

I find myself frustrated when it takes me longer to put my pants on. I burst into tears when I spill things and cannot pick them up. I hate not being able to clean the house the way I want to be done. I hate not feeling sexual and sexy. I hate struggling to get undressed and by the time I do, I feel so unattractive and unworthy that I cry instead of feel hungry for sex – something, of course I pride myself on. I hate it all. It makes me think I hate my body. It makes me wonder how the hell she continues to love me through all of this. My love told me during the harder part of this injury process that I rolled my eyes at her more than I usually do when she tells me that I’m beautiful and that she loves me. It is awful but at those moments I just do not believe her. How can she possibly think I am beautiful when I feel so pathetic?

All of these negative thoughts create significant cognitive dissonance in me, as I fancy myself to be an uppity crip. I believe I am beyond the negative understandings of disability and I thought I believed what I espouse, particularly in viewing disability as a beautiful and natural. Yet when it comes down to me dealing with a more disabled body than I am used to, all of my crip body politics fly out of the window. This realization exacerbates the negative feelings I experience concerning my body, as I feel guilty that I am not a good disability scholar-activist because I am allowing myself to concede to dominant narratives of disability.

A sage in my life reminded me that everything happens for a reason and that this may be a healthy catalyst for me to deal with the demons in my disabled closet. She told me love forces us all to open up the internal closet where we hide away things we do not want to deal with. The sage believes that in this way love is transformative because if we open ourselves up enough to allow our partner to see the good along with the bad, that some of these issues can be absolved through the healing properties of love. During this process, I finally articulated my struggle with feeling good enough for love as my leg heals and my partner held me and repeated to me how much she loved and how worthy I am of her love. As tears rolled down my cheeks, I took deep breaths trying to breathe her words into me. I tried to engage in that hug as though it were a meditation and allow myself to take the words and run them through my body.

I want to release myself of the social baggage of disability. I want to look at the mirror and always see the beauty that is me. I want to do this all with her by my side. For now, I am just trying to be more patient with myself and to take her words as her truth.

Thinking about this experience has made me really conscious of dynamics of interable love – love between a crip and a nondisabled person. It has made me realize I want to research this topic because it is ripe for scholastic masturbation. I have started to analyze and reconceptualize my understanding of care and explore ways that even during periods of physical incapacitation I can and do give. I want to explore why it has taken experiencing an injury with a partner to make myself own up to these internal truths and why somehow listening to her say I am worthy of love makes me think I should believe her. I want to hear the thoughts of people who have experienced interable love – and how this has impacted their self-concepts.

Please share your thoughts on this.

Powered by WordPress and Motion by 85ideas.