Get YOUR writing going: BLOG HOP from & for fabulous folks

Thank you for welcoming me to this Blog Hop, Ignacio Rivera! I met them in the summer of 2011 in San Diego, California at the American Association of Sexuality Educators, Counselors, and Therapists annual national conference (of which I am co-chair of for 2013-14). We had a fabulous chat about intersectionality and working together in the future. This blog hop is one way we can work together – and more should come!

Blog Hop is a blogging chain letter of sorts, in which a person features you in their blog and you feature several in yours in order to incite writing and spread the good word about our communities. PLEASE do check out the other folks mentioned at the end of this post, jump on the bandwagon, and enjoy the ride!

Here’s to ringing in a pleasure and success filled 2013! Happy 2013!


- Bethany

What is the work­ing title of your next book?

The books I have in mind remain untitled at this point, though I have been playing with phrases. I plan to write 3 books on the following topics: 1) transability ( folks who need to be physically disabled whilst living in an able-bodied state), 2)  sexuality and disability (specifically how ableism impacts sexual health/sexuality), and 3) an anthology on narratives by disabled contributors who have experienced sexual violence.

Planning to write all of this is daunting for a person who really needs to be inspired by deadlines. Instead of actually being a dutiful author asked to publish, I have been slowly poking through the process. Some of this is impostor syndrome and much of it is simple laziness – I’d rather talk than write. My gifts really are oral.

The only book that has a prospectus and a few chapters is the transability book. I am stuck on the belief of not *really knowing* the topic yet. This feeling that I should *know* is precisely what made me not publish my thesis on the topic for 3 years (please check out my piece here: Interrogating Transability: A Catalyst to View Disability as Body Art, 2011). I continue to be a bit scared that I cannot do the people or the topic justice. Though at this point, I am tired of waiting to know because I never will. I need to move forward. 2012 was not about writing but 2013 will be. Here’s hopping blogging is a good jump start for writing again, along with a lightened teaching load.

Where did the idea come from for the book?

Transability came from a sleepless night of researching transness, during my time in the bay area studying sexuality. I will admit, because so damn few do, that I did not know gender and ability were not binaries, until living there and frolicking with fabulous people. I really thought ability and disability were static polar opposites, similarly that there are just dudes and chics – such a silly little crip.

Reading narratives about transitioning or needing on transability.org provoked intense feelings of frustration and confusion. I wanted to work through why I was viscerally rather hostile with people needing to be disabled. This continues to disturb my body politics, as I tend to perceive myself as one who has accepted disability. I rather dig the cognitive dissonance it provokes in me and others.

The sexuality and disability book just needs to be written at some point because it’s my life focus. It will not be my first book because there are a few big cripsex books out now and I would rather not compete at this time (only child syndrome). Also, I think I need to age more before I write this one and the next.

Finally, the sexual violence anthology with other disabled folks just needs to be written. It causes me great pain that my people experience such high rates of violence yet do not talk enough about it, even to each other. People do not need to come out by name in the book, as I will, but I do want to bring together first person narratives around this topic. Despite the issues in first person narratives (e.g. veracity, lack of generalizability, etc.), they reach students and other readers because they make people feel (e.g. science of story-telling). Our narratives need to be heard, read and felt because part of the problem with the tired-ass widespread stereotype of disabled people as pitiable, tragic figures is that when f*cked up shit happens to us, too many people think of it as inevitable rather than as an outrage.

What genre does your book fall under?

 

Transability: disability studies, transgender studies, body modification

Sexuality and Disability: disability studies, sexual health

Anthology of Sexual Violence & Disability: narratology, sexual health, disability studies.

#nerd

Which actors would you choose to play your char­ac­ters in a movie ren­di­tion?

I’m not sure which oste0genesis imperfecta (OI) could play me; even though many people think I look like other OI. (Some of us do sort of look related because OI affects our skeletons in similar and most fabulous ways).

I think I’d rather dig the absurdity of having a giant play me, like a white femme version of Samuel L. Jackson of the OI character in Unbreakable, 2000 (dude is 6’2” – NOT even the tallest of OIs I know are that damn tall, especially if they are wheelchair users).

Or perhaps I should have someone pretending to be little person by wandering around their knees, like Gary Oldman, in the classic film Tiptoes, 2003 (featuring my friend Bridget the Midget).

And possibly it would be cool to be played by Bridget the Midget Powerz. We are almost exactly the same height (she has 1 inch on my 3’8” – tall among many with my disability) and *finally* I would have the 6-pack abs that I have never seen on an OI!

What is the one-sentence syn­op­sis of your book?

Transability: Why does it bother you that people need to be disabled?

Sexuality and Disability: Crips will make you cum.

Sexual Violence and Disability: People really do hate disable people and you need to know that is inevitable for our culturally assumed tragic existence.

Will your book be self-published or rep­re­sented by an agency?

Interest has been expressed regarding the transbility book. So… I need to write the damn thing and stop procrastinating. The rest will come. It seems part of my path.

How long did it take you to write the first draft of your man­u­script?

Nothing is complete. It will take longer than I want (1 year per book) and so will the publication process, as it always has.

What other books would you com­pare this to within your genre?

Those in the Corporealities: Discourses of Disability Series at University of Michigan. Would love for the sexual violence anthology to be South End Press worthy so that it gets a broad audience to call for coalitional political organizing and thought. But I am not sure if disability is quite sexy enough just yet.

Who or what inspired you to write this book?

All of the books I want to write involve starting with me-search (i.e. getting pissed off about an issue in my life and turning to theory and personal accounts about the same issues to understand them). Knowing that these ideas need to be shared makes me feel the pressure to write so there is a sense of permanency with the ideas. I want to share the stories people have a hard time talking about. When I do share in conferences or classrooms, it affects people more than mere facts/data. In a recent conference I spoke about having several lovers throughout my life and how that has not stopped the feelings that I am not beautiful, desirable or worthy. By revealing my continued internal battle with ableism, people responded with stories of their experiences, as well as affirming how necessary it is hear these truths. Certainly, the same is true for writing. The words need to be shared to start conversations in many modes. As an aside, I do find that by the time a piece is published it does not precisely reflect what I am thinking at the moment.  My inspiration to write comes from an inspiration to learn more about what I think through inciting conversations. This is a classic Libra trait.

What else about your book might pique the reader’s interest?

These books will be titillating reads because they will push already difficult subjects farther by exploring: the borderland of disability and ability, the pain associated with not feeling desirable, the specific aspects of many disability experiences of sexual violence. Affirming or politicizing disability tends to blow peoples’ minds. People may have braingasms that are out of control with such material. Hopefully it will inspire some more critical thinking around the possibilities of diversity in our bodies, minds, and sexualities.

Also, when I am on tour or sharing the books with the world through whatever mode I can – folks will find they are entranced by my giggle. To get a few tastes of such tantalizing sounds and a transcript, please check out Anthony Tusler’s interview of me for the Telling Our Disability Stories with the Accessible Technology Coalition. This giggle will drive sales and yet make me little money, but definitely stroke my throbbing ego. Many may be surprised that a disabled person could even have an ego – so hell that is pedagogical on its own.

Check out these blogs!

Aside from the blogs cited throughout this post, you should check out what I am reading these days!

Ignatio’s Poly Patao Productions includes a smart and thoughtful collection of personal musings on sex, kink, class, race, gender, and culture as well as sex toy reviews, a Q&A column and events. They is someone to catch when in town to learn from about various things that can improve one’s life holistically.

Lydia Brown’s Autistic Hoya is a kicking ass uppity, smart, autistic prideful and diversity encouraging blog. She is one of the leading voices in calling for neurodiversity. Her posts are delightful when you one needs to get pissed off, think through issues, and decipher when one engages in ableist actions.

Melanie Yergeu’s blog Aspie Rhetor consistently pushes all of her fans to think deeply about the resonance of words, structures of oppression in academe, and contends with intense material. Her outing of suicidal ideation helped me express mine, even though many argue it is not professional to do so. F*ck the closet, someone needs to scream some truth and Melanie does!

Cory Silverberg’s Sexuality blog with about.com provides sexcellent information in easy to consume morsels. He challenges readers to think about topics that might not otherwise come into contact with when just pursuing about sex on about.com – like disability, pornography, sexual agency, and effective/healthy communication. He is a great ally of mine and I adore. Also, if you have a nugget in your life – please buy his lovely book What Makes A Baby.

NOTICE: more recommended blogs, text descriptions of images and good grief, a new theme for this blog, COMING soon!!!

Share

What I Would Tell My Teenage Self about Sexuality

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.

Share

Learning about KripLove from Krip Hop: Part 3 – KripLove is THE Revolution

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.

Share

Learning about KripLove from Krip Hop: Part 1 – Weathering the Storm before Krip Hop

As I began to write this blog, I recanted how the past few weeks and months have been exhausting emotionally and physically. Teaching two new classes, running off to Michigan to do a sexuality and disability retreat that was really difficult for many reasons (article coming soon about that), planning this event, feeling anxious from being behind in grading and contending with ableism has been a lot to manage. I have come home many days this semester crying over feeling like I don’t take enough breaks but feel I don’t get enough done. I also cry about the ableist comments I hear all the damn time – all around me, in many places they shouldn’t be. Places that should be disability friendly are often harsh places for krips, especially the uppity ones, and it’s processing through all of this that I have found myself able to sit and write about Krip Hop in ATL.

Just putting together this event, to celebrate disability, required weathering a lot of ableism. My boss and I had to fight for a ramp for the stage for Krip Hop – which was not won until the week before the event.  I had to argue that we needed space for wheelchairs in the crowd – even though I was told it would throw the symmetry of the event space off. I was laughed at for requesting the ramp, as well as the idea of people walking up the ramp. I continue to wonder why a ramp is so humorous. Even though some might not believe I can do it, I played a diplomat or a compromising, happy oppressed person – depends on you frame this – because I just smiled and worked with the jerk to provide access to the artists and our guests. I knew I had to play nice to get what a successful event needed. But, it wore me down because of the direct attack on my people and because I had to silence a just response to his overt ableism. Thinking about it now makes me know this is why many activists quit movements – they just get too worn down by the realities of oppression in their own lives that they cannot muster up the energy to keep fighting against systems of power. They and I just want to survive. I don’t want to be a leader sometimes.

I felt a spectrum of emotions throughout this whole process of planning, execution and celebration of Krip Hop. I cried tears of joy after the event because of the KripLove I felt in the moments we shared celebration of disability, and I cried tears of sorrow because of the reactions I got after the event that it was hard to hear people identify as disabled and even *gasp*as  Krips (more on language later). The anxiety I felt before the event was tremendous. I really didn’t want to feel what I felt the last time I hosted a CLD event: like I hurt the center and its constituents because I ranted about my passion, sexuality. Leroy Moore (our delicious keynote, founder of Krip Hop Nation, co-founder of Sins Invalid and Krip brother of mine) procured an MC so I could minimize my voice in the event and more importantly because she had more experience with hip hop. This was also strategic on my part because I wanted to show everyone that these events are not about my ego, nor are they spaces where I need to say my truth – they are spaces for our guests to share their truths about disability.

I tried desperately to walk the tightrope of providing a space for disability celebration without pushing people to the point that they were angry or saddened. Of note is that so many of our panelists and artists said things that I wouldn’t get away with. It makes me wonder if having a sexuality focus has marked me as deviant, and if everything I say is somehow already too charged to hear. But alas, these are questions for another day – you want to read about Krip Hop and that’s the story I will tell you, in five pieces. This post is broken into pieces to ease consumption of a somewhat long tale of journeying through KripLove.

Share

Political Economy of Disablement

In response to a recent blogroll on Disablism – I chose to share a talk I gave last week about poverty and disability for Georgia State University’s chapter of Amnesty Intentional; specifically to address their new “Demand Dignity Campaign.” I chose this topic because it is a perfect example of an aspect of the institution of oppression associated with disability – ableism/disablism/disablement (these labels vary by context, country, and linguistic leaning).

Disability Defined

I began with a definition of disability using the definition set-forth in Article 1 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

This definition is useful for three reasons. 1) It is relevant to describe exactly what disability entails when espousing a theory related to disability to people who claim no disability knowledge thereof – even though we are everywhere. 2) It is imperative when talking about any issue – particularly on a global level – that uniform definitions be utilized. Uniform definitions help with effective assessment and quantification of any variable appealing to funders and people who want to know the scope of a given issue. And it seems that a definition that was arbitrated and agreed upon by a global constituency seems to be a good place to start to find a uniform definition. 3) The definition gets at the sociocultural aspect of disability that is so often glossed over when talking about disability; with the normative understanding of disability entailing a personal tragedy that structural and environmental forces play no role in.  The sociocultural component of disability (disablement) will be taken up at length in a moment.

The United States is one of the 144 signatories of the CRPD yet did not ratify it (only 85 nation-states did). When a nation-state ratifies a treaty it becomes binding law in their land. Therefore the ideas codified in the CRPD could be actually enforced in the US. Gasp! What do you mean people could have the right to free from torture (Article 15) and be included in the community (Article 19) – i.e. not be institutionalized? Well, not in the United States. Why, you may ask?  Ah good ole American Exceptionalism – the idea that we already have good binding law in our land (the Americans with Disabilities Act – ADA) thus do not need any other doctrine to rule. The problem with our fabulous US law, the ADA, is that it is an unfunded mandate – to enforce it one has to sue and most disabled people are economically ghettoized making it difficult, if not impossible, to enforce the law.

Did the US not sign the CRPD because we do not want to be held to an international standard of human rights law?

Disability & Poverty Globally

Before getting into the specifics of the economics of disability in the United States, it’s important to note that disabled people comprise the world’s largest and poorest minority group.  We are often the poorest of the poor and the most isolated of the isolated.  Of the 650 million disabled people in the world, 2/3 of us live in poverty.  Of those, 650 million disabled people, 100 million of them are impaired because of issues stemming from poverty – malnutrition and poor sanitation.  This fact illuminates a dynamic with poverty – in which poverty creates disability AND disability enables poverty. This cycle of the poverty is illustrated below.

Disability in America

According to the US Census Bureau report on disability in 2005, 1 in 5 people are disabled equaling 54.4 million people. Of those who are working age, 30.7% of disabled people are employed compared to 75.2% of nondisabled people of the same age.  The 2 million disabled people incarcerated in institutions nationally are not included in Census numbers.

The American Disability Poverty Trap

The question implicated from the above recitation of disability statistics is: what happens to all the working age disabled people who want to work but aren’t?  This question acknowledges that there are some/many people who don’t want to work and think we should get over the idea that personhood hinges on working.

Those of us who can’t or don’t work often have to rely on the vicious machine of social support which come in the form of Social Security Income (SSI) and Social Security Disability Income (SSDI). The viciousness of this system comes to fruition in its creation and maintenance of poverty for disabled people.

About 9 million disabled people receive SSI or SSDI in the US, with 75% kept at or below the poverty line.  The statement cannot be made universally that SSI and SSDI compels poverty because of the nature of the funding systems. SSDI is something one pays into and can procure after acquiring disability – so the amount one gets is contingent on how much one made during their nondisabled days (similar to unemployment).  SSI is funded through state and federal dollars so in some states one could get (in theory) a livable amount of money. For example, in California one can make about $800 dollars on SSI, whereas in Georgia one can make about $600. Neither of those sums of cash seem livable. I dare you to try to live on that income and survive; actually I don’t.

Another big problem in this system is all the disincentives that are associated with getting off these forms of income (and OUT of poverty). To procure SSI or SSDI one must demonstrate they cannot work and are really disabled. The latter is almost humorous because so many of my federally defined “severely disabled” friends and I have been denied SSI because we “aren’t disabled enough” despite wheels, spazliciousness, etc. Proving we cannot work creates a deleterious psychological barrier for disabled people. Through shoring up our case that we need social support, we have to argue the point so strongly  that we might internalize it as truth. This internalization reifies the culturally pervasive assumption that disabled people have no work-value. This assumption is aided by (and pushed on us through) the network of people who make a living by establishing and enforcing the boundaries to procure SSI and SSDI.  It is reasonable to assume that those pushing the “lack of work-value” ethos actually believe it.

Perhaps the psychological barriers argument seems a bit soft-science driven your sensibilities, so here are some hard facts. If a disabled person wanted to make more money (to survive) than SSI or SSDI provides, they might seek additional sources of income. But SSI and SSDI benefits are reduced by $1 dollar for every $2 dollars of additional earnings procured; that’s a tax rate of 50% (higher than that of the wealthiest people in the US). Who wants high-taxation that keep people in a system “draining” taxes? Along with the extreme tax-rate of earned income, disabled people may lose their housing subsidies and food-stamps when seeking to earn money other than social benefits.

Even more alarming is that one will lose healthcare (Medicaid and Medicare) if a disabled person procures “too much” additional funds. This is one of the most diabolical active agents of the disability poverty trap because so many of us are dependent on healthcare. This is especially true for people who need long-term support care (or attendant care to help with activities of daily living, like bathing and dressing). Thus disabled people have the choice – do we take the leap and hope that a job we procure can provide good healthcare (and has no “pre-existing conditions” clause) or do we stay in the system to survive? Also, what happens during the gap between losing a dream job and the struggle to get back in the system to survive?

As a sexologist I cannot neglect to mention the disincentive to marriage that is associated with the procurement of SSI and SSDI.  In sum, disabled people may lose their benefits if they marry because their partner’s income will be judged as their own assets. This can mean that marrying someone living at or just above the poverty line can trigger loss of benefits – and loss of survivability for disabled people and their partners. This puts some folks in a precarious situation because they want to marry – and not live “in sin” – but can’t (coalition-building example here with queers seeking marriage rights).

These facts address the fallacious and oppressive idea that disabled people (along with others trying to survive on social benefits) enjoy a great life “draining” the government.

Underpinnings of the American Disability Poverty Trap

Undergirding the disability poverty trap is our history of pathologization and devaluation (i.e. stigma) that is enacted in discrimination.  Stated another way, disabled people historically have experienced structural violence through forcing us to live in cultural or environmental locations that harm or claim our lives. This hinges on the archaic belief that there is a biological root to our “degeneracy.” This is part of the philosophy of the rampant eugenics movement which occurred in the US until the early 1970s. Eugenic programs targeted not just disabled people, but people of color and those improvised as well (a good coalition-building example). Some disabled people still face sterilization but are not often outright called “degenerates” anymore. Current examples of sterilization are framed as benevolent treatments that help protect us from sexual violence and render us more manageable for our-givers. The passing of time has really brought progressive values.

Many people profit off of our devalued social position, as there is an industry of “care” built around disability. The most lucrative example is institutionalization – with 2 million inmates in nursing homes that are often run for profit (2/3 are) and where one crip body can earn $30,000-$82,000 annually. Ending institutionalization is a heated issue, in which many people are against. As an example, in many localities institutions/nursing homes provide a large portion of the jobs in the area. Understandably many people want to have jobs so they can survive and legislators protect this voiced economic interest of their (valued?) constituencies. What’s lost in the fight for workers’ rights is the rights of disabled people.

Does the disability poverty trap appear to be a cultural caste system – in which disabled people are assessed value based on particular (sometimes immutable) trait?

Ending the Disability Poverty Trap

To address the problem of poverty globally, it is important to examine the cultural context of disability. This means it is unreasonable to assume that disablement operates the same in every location and work that seeks to ameliorate disabled people cannot only employ a western understanding of disability. It requires those who want to work on this issue to listen to the people in the locations we seek to help.

In the United States, many people are working to change the social status of and the social services for disabled people. Crip shoutout to ADAPT: the rabble-rousing group of uppity crips who comprise the radical direct-action contingent of the disability rights movement. ADAPT works to end the Medicaid-bias toward institutionalization and promote accessible affordable housing for all. Check out the narrative of their recent in action in DC by sexy friend Philosopher Crip. Resolving the two issues ADAPT focuses on will help promote the human rights, inclusion and visibility of disabled people – thus working to eliminate the traditional sociocultural understanding of disability that undergirds the disability poverty trap.

That seems to be one of our biggest problems – dominant culture does not value disabled people. The graph below helps illustrate that at the root of the disability poverty trap (and the circular nature of poverty creating disability, as well as disability causing poverty) are sociocultural values that harm disabled people.  Thus, if parties are really invested in ending the disability poverty trap, it is crucial to work to dismantle the negative assumptions associated with disability, as well the enactment of those assumptions. This is how work like that around sexuality and social inclusion are useful to address the political economy of disablement.

Please consider working with the disability rights movement, if you aren’t already. Support work done by groups like ADAPT. Critically engage your (and others) understanding of what constitutes valued personhood. Subvert the understanding of normal (at least in your own mind). As cheesy as it may sound, through changing minds, we can change the world.

Share

Crip on Crip Action: Scholar-Activist Love

This is a repost of an interview of me done by the delicious Philosopher Crip (aka Joe). He’s a great disability scholar-activist comrade who was open to me sharing this on my blog.  Please use this as your catalyst to check out his thoughts.  He’s brilliant!

Joe: I like the ring of your blog name, tell me more. What and why are you “confessing” and who is your confessor?

Bethany: I may as well start this sexy interview with a confession: I’m a nerd and proud of it. I LOVE alliterations and have embraced the label ‘crip.’ It signals disability pride and serves as a fun verbal slap on the face of the ableist world. Thus I needed a hot word to that started with ‘c’ in my title to satiate my need for mental masturbation.

Additionally, the overall purpose of my blog is to provide a platform for me to confess (i.e. share ideas that are traditionally not voiced) thoughts that I feel like disabled people just aren’t talking about publically, such as internalized ableism, the meanings of dating a nondisabled person, etc. I want to confess my truth because I think it can be a healthy catalyst for a communicative revolution. It is time we at least talk about these things with each other. I feel like here is a political impetus to be silent about some of the frustrating and painful aspects of disability, as we are all supposed to be pushing a disability positive narrative. Frankly, I feel that approach is not emotionally honest and actually can do us more harm than good.

Joe: What moved you to start a blog? What do you hope to accomplish with it?

Bethany: A noticed a disability blog carnival coming up on relationships and wanted to write something about my thoughts on my relationship. Being in a relationship with a nondisabled person has caused me to really think a lot of the desirability of my body and my ability to care. I wanted to share these thoughts with other disabled people in hopes of getting a conversation started on the topic. That’s one of my favorite things about social media – I can connect to a larger community of crips than those in my area. I feel connected to my people and thrive on that.

Also, I have been reading and thinking about the role of social media in translating research findings into mainstream culture. As a scholar-activist, I need to be intellectually rigorous but I also need to transmit these ideas to larger culture in order to try to create substantive social change. I see blogging, tweeting and Facebooking as wonderful outlets to help realize this desire. I have also decided I want to get into film making – because I realized if I disdain most representations of disabled people, why shouldn’t I create the media I want to see?

As I have said, I would like my blog to be a communicative catalyst to get people talking about things that we shy away from. I feel like confessing my truth – and thereby rendering myself really vulnerable publicly – can provide space for others to do the same. Through telling my truth, it may make it easier for others to be emotionally naked because we would all know we are not alone.

Joe: Talking about accomplishments, what kind of work do you do when you aren’t blogging? How do you see CripConfessions.com fitting in with the rest of your work in the disability community?

Bethany: I’m a trained lawyer and a sexologist. At the moment, I am clinical professor and policy analyst in the Center for Leadership in Disability at Georgia State University. I teach some classes, capacity build with our community partners, host events, and advise a disability student group on campus. I diligently strive to infuse everything I do with radical crip politics so that I remain true to my life purpose – the social amelioration of people with disabilities. When I was 20 I decided to devote my life to disability and I am sticking with that.

CripConfeesions fits into my overall work because I am devoted to raising awareness and creating social change for disabled people. Through blog posting, I hope to add to my other work by providing a personal glimpse into my nuanced reality. I want more people to understand that disability is not a personal tragedy, but is an artful way of being. Of course, as a sexologist, I also want people to see disabled people as desirable and viable sexual/love partners so I hope some of my posts make some people realize how deliciously sexy disabled people are. CripConfessions then is just one part of the overall revolution of consciousness I seek to be a part of.

And it’s really exciting that we are building a community of young scholar-activists. We are the upcoming leaders of our movement and I think it’s really beautiful that we support each other and our work. We need each other!

Joe and I making a crip sandwich out of my partner, Sara, at the Atlanta ADAPT Action

Joe: Like myself, I have always thought of you as someone that fancies herself to be both a scholar and an activist. Do these roles ever come into conflict for you? Do you ever experience any dissonance when trying to work in two arenas with such different cultures and sets of values?

Bethany: You’re right; I’m a scholar-activist. The roles do conflict at times because my radical politics do not always feel satisfied in the work place. People do not want to hear about privilege and power at work; they want to do their jobs to get paid so they can live. But as an activist I can’t and won’t silence myself, sometimes to the determent of my mental health. A colleague recently told me that it must be exhausting to constantly view the world as animus filled against certain people and he is right – but that will not stop me. More people need to be critically conscious about their realities and I think it could be even more emotionally exhausting if I were silent about the issues I care most about.

Also, though the complaint has been levied by many people – it’s worth repeating: the academic world is not accessible to most people and some of the revolutionary ideas that are created in the ivory tower never reach the masses. I want to marry these two things. I want what I write and think about academically to become reality. This is why I have tried to work toward making my work more accessible; blogging has really helped me in this shift. I want to change the world not just publish or perish.

Joe: Why have you chosen to do both? Couldn’t such tension and conflicts be avoided by doing just one or the other? Is this a matter of personal life satisfaction or is it that you think your work is better served?

Bethany: Sure tension could be avoided if I would just shut-up and consent to being a cog in the interlocking systems of oppression that screw over countless people. I could have been a lawyer – slaving away at a job that means nothing to me for good pay but I would have hated myself and my life. I cannot live my life in a way that is not true to my crip ethos. It took years to be able to look in the mirror without cringing at my disabled body and I want to do everything I can to change social views of disability so people do not have to go through the self-loathing that I and so many of my comrades go through.

And honestly, the grappling of tension in my roles is good fodder for debates and adding nuance to my arguments – which is intellectually orgasmic! Being a person with multiple locations/identities and passions is the kind of human I want to be. It’s really the only way I know how to live.

Joe: A lot of folks that work in the disability community seem to have their niche passions and while I have met a few people really interested in the intersections of disability and sexuality, none have really made it into their life’s work, like you are. What’s the deal here? Why is crip sex so important to you personally and professionally?

Bethany: On a very base, primal level, I confess, I am a hedonist; I love pleasure.

But on a deeper level, I experienced a confluence of a few really pivotal things that shifted my life focus to sexuality. In 2005, I was in law school and with every passing day there, I lost faith in the law to create social change (the reason I went to law school in the first place). That spring I hosted a conference about sexuality and disability. It was the crowning achievement of the many events I hosted at the University of Florida because it ROCKED the campus! I brought together some really amazing people including artist/activist Sunny Taylor, motivational speaker Greg Smith, crip sexologist (and my mentor) Dr. Mitchell Tepper, and former adult film-star Bridget the Midget Powerz. I was right in thinking a former porn star would attract a crowd, even for a disability focused event. We had a great turn-out for the event despite the downpour of rain and we addressed some serious issues of internalized shame, feeling undesirable and discovering sexual pleasure. In the process, I learned how comfortable I am with talking about sexuality and that it is a real professional asset. The whole experience was really profound and the after-party was one of the best parties I have EVER been to :-)

Less than a month later, I lost the first man I ever loved to suicide. Karl was a beautiful Norwegian that I met at a Rehabilitation International conference in Oslo. We shared views on disability pride, using the media as a tool for social change, among other similarities. I adored the man and spoke to him via phone and email as often as I could. We spoke of me moving to Norway after completing law school – and despite my serious weather bigotry (I’m a Florida girl), I was ready to move just to love him.

One morning he called me around 5 am to confess to me something he had struggled with telling me since we meet a year earlier. He explained he could not achieve and maintain an erection, stemming from his spinal cord injury he incurred 16 years before his confession to me. I explained to him that his penis was not what attracted me to him, that sex was bigger than a penis and that he could give and receive a lot of sexual pleasure. But my words did not meet him. That was the last we talked. I learned from his sister about a month later that he had hanged himself. It was one of the most devastating periods in my life and I credit my friends for keeping me alive. I struggled to eat during that period as I just did not want to take care of myself. I cried and felt purposeless for months.

I realized in the grieving process that I was not just mourning Karl’s death – but I was mourning all the other disabled people who suffer in silence over the issues of sexuality. I vowed then to devote my life to changing the conception of crip sexuality so that other people would not hurt the way Karl did.

This gets to the point of the importance of confessing; if Karl had confessed his pain sooner perhaps he could have processed it instead of ending his life.

Karl, a lost comrade

Share

Getting Emotionally Naked: Notes on an Activist Voice

I just submitted a paper to Atlantis with my good friend and colleague from SF State’s Sexuality Studies graduate program Sonny on coalitional politics and embodied scholar-activist efforts to further a theory we call bodiosexual justice.

Bodiosexual justice is a neologism (= nerd sex) that is meant to convey how our trans and disabled bodies are similarly stigmatized, how this stigma impacts our sexual health, and how our oppressions stem from similar sources thus encouraging us to work together to further embodied justice. We discussed how queer bodies – those deemed “Others” through the social construction of the imagined normate, including aging, poor, fat, raced, trans bodies, and disabled bodies etc. – are often denigrated through interlocking systems of structural and conceptual oppressions.

We shared our very personal narratives and experiences working together.  We did not speak for other identity groups who have queer bodies because we recognize that is often a part of the oppression we seek to redress.  A substantive component of the piece dealt with the practicalities of coalition building – with a lot of the focus on the role of emotional work  and honest communication in effective coalition building.  It was one of the most beautiful writing experiences of my life, largely because I reclaimed a sense of rabid activism in my writing.

Somewhere along the way in procuring degrees and mentally jerking off with more and more nerds, I lost my edge and started to feel I had to rely on other people’s voices entirely too much.  While I used citations in this piece to respect the work I build on, Sonny and I both engaged with our embodied identity knowledge as sources of expertise.  It was liberating and emotionally gratifying. It made me cry and shake a bit from feeling like I was being more honest with myself and others than I have been in a long time. I credit love, dealing with my most recent injury, and blogging with the specific intent of trying to capture in writing the way I give speeches for this reclamation of my activist voice.

Below are enhanced/altered pieces (for copyright purposes) of my crip narrative that was part of the paper:

In my ten years of working in disability culture/studies, I have journeyed from a self-loathing disabled person who struggled to admit my disability to a self-described uppity crip. My sexy comrade Robert McRuer (2006) explains that the word ‘crip’ works to build coalitions across different disabilities (parallel to the word ‘queer’) and signals proclamation of disability pride by reforming and embracing a historically derogatory word (i.e. ‘cripple’). My use of the word ‘crip’ provides me a method to deny compulsory able-bodiedness through verbal assault.  McRuer makes clear that able-bodiedness is an institution in which American culture “assumes in advance that we all agree: able-bodied identities, able-bodied perspectives are preferable and what we all, collectively, are aiming for.”

Though some disabled people strive for able-bodiedness through the search for a cure, most notoriously (and disdained among many uppity crips) Christopher Reeve and his campaign to cure his spinal cord injury, many of us embrace our queer bodies and feel better in our skin by doing so. This is true for me; as I decided at the age of fifteen to begin to use a wheelchair despite my mothers decry that I “would never live a normal life” if I did not walk. I stopped walking because I went through a cycle of several fractures stemming from having brittle bones and a femur and double tibia rodding surgery that kept me bed-ridden for about six months. It exhausted my mental health and I decided walking was not worth the psychological cost.

The shift to using a wheelchair has made me more visibly queer. This visible push farther outside the bounds of normalcy has forced me to work to reconcile the “jagged edge between [acculturated] self-hatred and pride” (as the delicious poet/activist Eli Clare wrote) because my queer body provokes daily reminders of my non-normativity, often through being the object of staring and/or intrusive questions about my body. Often I find these socially acceptable microaggressions to be more taxing and disturbing than other aspects of ableism, such as lacking physical access, because they happen so frequently. Despite the exhausting nature of being a spectacle, I find using a wheelchair to be freeing; I can now glide through life as fast as I want without the pain and struggle related to walking. And in making the decision to wheel, I have allowed myself to live my “normal” life – i.e. the way my body feels most comfortable.

Interrogating disability through my work has been revolutionary for me because it has helped shift the focus away from my body as a problem to society as the problem. This idea captures the social model of disability by moving away from the medical model through separating the personal issue (impairment) from the social issue (environmental and attitudinal oppression).

This theory often fails crips because it prevents acknowledging emotional realities of frustration noted in impairment. It creates a political impetus to be silent about our nuanced realities; this denies us the ability to confess the embodied nature of disability. This recent realization that I do not always have to pander to the requirements of the social model has been liberating because it allows me to acknowledge that it is difficult when I am in physical pain and/or frustrated with my impairment. Likewise, the daunting process of breaking apart internalized disability narratives may not end until oppression ends; therefore it is reasonable to feel sad and angry when negotiating stigma.

Much of my anger stems from internalized ableism and shame around my body.  Sonny has helped me reframe my sense of shame by stating “shame=oppression and shame=injustice… [this] helps me to feel validated in my shame because [I realize] it comes from outside, even though it is a very internal emotion.”  Even Karl Marx is in concurrence here as he wrote “shame is the fuel of revolutionary consciousness.”  Processing and talking about internalized shame is a revolutionary process.

But to be clear there is a lot to be angry about aside from internalized shame.  And being angry or sad does NOT make me a bad scholar-activist!  Anger is often the fuel of revolutionary acts.

Pervasive social assumptions about disabled people  make us justly pissed.  Some of those commonly-held disability assumptions include the belief that disabled people are childlike, dependent, and asexual or hypersexual.  These ideas compose part of disability oppression.

The effects of these misconceptions entail the legitimation and social endorsement of human rights violations exacted upon us.  A few are highlighted here.  Globally, disabled people comprise the world’s largest (650 million or 10% of the population) and poorest minority group, amounting to about 20% of the world’s poorest people. Disabled people continue to be “humanely” sterilized and killed in various places around world, including most aggressively in the Netherlands. And while eugenics is often perceived as a Nazi project, US legislation for compulsory sterilization of ‘degenerates’ – including intellectually and/or physically disabled people; especially those of color – existed nearly a decade before the Nazis started 4 Tiergartenstraße and served as its model. Disabled people are subject to countless hate crimes, often unreported and at the hands of our care-givers; yet until 2009 were not a protected class of people in United States federal legislation.

Along with denying disabled people our basic human rights, these commonly held beliefs about disability are sociopolitically disempowering. Even those of us who are not incarcerated in institutions face extreme social isolation due to lacking physical access, accessible transportation and/or adequate monetary and social support.

All of these issues have a deleterious impact on our sexual health. The World Health Organization (2006) has called for a holistic understanding of sexuality in which sexual health is defined as: a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.

This definition makes clear that disparities in sexual health are often a result of the presence of oppressive social forces, such as discrimination and coercion.Therefore, disability oppression does not just wok to make disabled people poor, subject to abuse, sterilized or killed; it also harms our overall sense of health.

I encourage everyone to get emotionally naked and join Sonny and I in this incredibly enriching intellectual orgy of embodied praxis by engaging with your emotions around your corpo(realities).

Share

Thoughts on Interable Love at a Breaking Point

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.

Share