There Was No Access Into Her Vagina… Monologue

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Image of Robin and I seated next to each other. We’re respectively black and white, and both femme sexologist gimps – noted in her shirt “sex geek” and mine “criptiques.”

Recently one of my best friends Robin participated in the performance of the Vagina Monologues. About an hour before the show, I was told to have another friend go to the front of the building to notify staff that my partner and I would enter the back of the building for special access. This sounded doable, I prepared by asking my buddy in the car if she would be willing to go to the staff to notify them I was in the back. It’s common to find the accessible entrance hidden – tucked away near the trash bins.

As soon as my dear friend got to the venue she called with fear and sadness in her voice. Though she was set to perform for the first time since I have known her (4.5 years), she was walking me through how I might access the space, after learning the performance venue was down a flight of stairs with no access aside from a human lift. She told me this, as I tried to shift the focus to her. This was her show night, not a night about access foibles. I kept telling her break a leg. And finally said I would call back with my decision.

After some dialogue, I opted not to be carried to see the show. No one deserves my reasoning for this decision, and my deliberating could suggest internalized ableism (e.g., I felt guilty because I didn’t want to put myself at risk to appear more able or included), I share to expose these complex aspects of ableism.

I opted out of being carried because I have to think about my energy, my bones (i.e., my brittle bones disease), and generally my body within the scarcity model. No longer are the days where I can have fun today and not think of tomorrow. I have to consider if being put in an unsafe situation at X time might cause an injury that will require X (usually more than I think) time of recovery.

Math is not my strong-suit, but I have to calculate this risk daily.

I decided to not attend the Vagina Monologues for the FIRST TIME in my life – can you believe a sex nerd (who lived on a University campus for far too long) like me never saw this?!!!- and not see my sexxxy bestie in the name of being a pragmatic gimp. No injury, no worries.

And then… my wonderful bestie, a disabled chica too, wrote a long status about how heartbreaking it was to not have me in the space for her show. It was genuine and beautiful, as she is in life. What was absolutely fascinating was reading the response of people losing their damn minds over this happening, as though it is so terribly infrequent that ALL the lawyers should band together against this extraordinary injustice.

Out of respect to her and her upcoming actual performance, I never chimed in on the thread with my surprise at their responses.

The response had me stunned. I didn’t understand how lacking access at one bar triggered such outrage: people wanted the department of justice involved and some stated they were crying. It was intense. And it was one night. Out of a million inaccessible evenings and spaces – in which barriers are erected to block the lives of all sorts of disabled people – this was one time space. These access barriers block our ability to eat delicious food. To find sexual partners. To frolic with friends. And live our goddamn lives they way we want!

This felt really mild on my spectrum of disability discrimination stories I have heard or experienced. It was absolutely shitty, no doubt! I wanted desperately to see my friend shine in all of her glory, as she should – always! I wanted to be with friends and talk about vaginas. But it didn’t kill me missing it. I should have a list to rattle off about the top 10 most excruciating access fails in my life because there have been some amazingly egregious ones – but I don’t have them.

Instead I want to live with a glimpse in the day of a life of a visually obvious gimp: a friend was just taking photos of the recent dump of snow, a few blocks from her house and within 20 minutes 4 people asked if she needed help and one if she needed a meal for the evening. This woman was dressed appropriately for the weather, taking photos, and was harassed only because she is an obvious wheelchair user.

Reading her story today did not shock me, it made me laugh because it is so common that people act this ridiculous. I hope, like one of her friends, that people are so generous when they see other people outside who may need a meal.

Please be angry WITH US!! Rage against lacking access, discrimination, and exclusion from all spaces and structures. Speak about discriminatory acts and procedures when you notice them. Don’t be the person that decides to be intrusive and pushy with ableist questions and thoughts. Read a blog, read some books, just Google it before downloading all over a disabled person. Remember that oppressive power expresses itself in similar and interlocking ways. Do not cry to the oppressed person when you figure out what discrimination is, and don’t ask us for a hug because you can feel the pain, if anything you consider treating us. Fight lacking accessible, especially to VAGINA related spaces!! Comrades??!! Join me, and as I do with you.

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Our Stolen Phone Episode, except it was Our Penis

Dear Abbi and Ilana,

For our anniversary this August, we took a trip to frolic in the city for a whirlwind of Broad City inspired adventures. From troubles in transit including Penn Station, to Sara reenacting the scene where Abbi tries to score in the park and the guy walks away mid-sentence, to experiencing a wonderful tale of dick lost and found all in the name of BROAD CITY LOVE!

We stayed with our friends near Washington Square Park, and I naturally insisted that we grab a photo in front of the park fountain to show off our love to Broad City.

Image of Sara and I front of the Washington Square park foundation. I'm wearing my beautiful "Cunt" shirt.

Image of Sara and I front of the Washington Square park foundation. I’m wearing my beautiful “Cunt” shirt.

Sitting on the edge of the foundation, we got so captured in taking the image that we left behind our anniversary penis! This is not just any penis; it is a delicate depiction of an erect phallus using fake eyelashes glued on paper by Frances Goodman. This fierce piece of art was a perfect anniversary gift from my uppity freak vegan artist crip sister Sunaura Taylor and her partner and fellow artist David Wallace.

I’m grateful to have friends who indulge my decade old swelling phallic art collection.

30 minutes after taking our photo, we were searching for a certain pizza place and Sara realized she was no longer carrying our penis. Sara and I panicked in unison when we realized we lost our cock! Our friends tried to calm us with the idea that sometimes art passes through people and that the penis would find a nice home. But we could not let our cock go without trying to find her! Off we went back to the park. Wanting to pass out, crying, and really needing water – we made it to the park.

I led the way, weaving shamelessly directly in front of various bits of public art, including a symphony with a crowded audience waiting for the show. My rationalization of such behavior: I helped create part of freak nature of New York f-ing City. But most of all, damn the world – we needed our dick!

When we could see the fountain, we could see our cock leaned against the foundation untouched. We screamed with joy and Sara ran to grab it!

Sara standing in front of the foundation with our cardboard wrapped cock art! Sullivan makes an appearance running toward the penis.

Sara standing in front of the foundation with our cardboard wrapped cock art! Sullivan makes an appearance running toward the penis.

It was a truly epic moment, heavily under the influence of Broad City!

And this dick was worth the effort, eh?

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Photo of erect phallic art made of fake eyelashes

Peace and Love,

Bethany, Sara and slimpug Sullivan

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Wandering Upon a Gimp in the Park

After a 3.5 hour commute from DC to Penn Station, my crip comrade drove me to my crip sister Sunaura’s apartment. Our first call of duty for the afternoon was to take our service dogs (which we adopted on the same day, without planning to do so, over 4 years ago) on a walk in Washington Square Park. The children got their olfactory needs satiated. Their get their smells, whilst we got our stares. 2 wheelchair users with non-typical bodies and ridiculously cute dogs often causes quite the stir, but it is exciting doing this together because we feel powerful. The stares change meaning as we roll together, it’s really wonderful and something we have waxed poetically on about for much of our 11 year friendship.

View from Sunaura's arm-rest of Sullivan and Bailey (two small dogs) walking in the park

View from Sunaura’s arm-rest of Sullivan and Bailey (two small dogs) walking in the park

It’s a powerful truth to know expressions of ableism (i.e., stares, intrusive questions, lacking access into spaces) are much easier to handle when we are together. There is strength in our togetherness. The root of our friendship is based in disability solidarity, after meeting on the Free Our People March with ADAPT in 2003. It was likely one of the weirdest most emotionally intense experience of our lives and I’m so grateful I meet my best friend on the march.

As we experienced the gaze of many people, one person stood out as wanting crip connection. There was longing in her eyes, as she scanned our wheelchairs and our fur children. She looked to be in her twenties or so, seated in a non-power chair that has to be pushed by someone else, with no assistive device to aid in communication. Sunaura and I wheeled past giving a gimp nod acknowledging a fellow disabled person in the space. But something pulled me back.

Maybe I noticed that look in her eyes of sadness about lacking access and freedom that felt hauntingly reminiscent of feelings I had as a teenager. Or maybe it was just eagerness to interact. Or maybe I just projected a lot onto her. I felt simultaneously like we could be provoking anxiety (ableism trains us to fear disability, and try desperately to stay away from it – this is part of the reason even some of us born gimps are the only disabled person we know for much of our lives, and the first time crip socializing may be intense) or forging welcomed crip camaraderie. It’s much like my insistence on giving visibly disabled people a crip nod, to recognize that I see them and to offer props for going through the ableist world. Some don’t respond, though they notice.

Despite some back and forth of whether we should go to her, I decided we had to say hello. As I noticed her eyes tracing Sullivan’s path, I asked if she would like to pet Sullivan. She eagerly shook her head in affirmation. I lifted Sullivan up so she could pet Sully. The person with her told us her name and how she really wanted a dog but she couldn’t have one. Though there was no verbal communication between Sunaura, the young woman and I – we think we saw in her eyes a desire to wheel with us or other crips.

That feeling of her longing for crip camaraderie was solidified as a long tear slowly rolled down her cheek, as she reached for more Sullivan love.

After a few minutes, Sunaura and I wheeled away. Initially, I just needed some silence to let my tears roll down. I felt ache, I feel it now writing this. That ache reflects reemergence of my own longing for community and feeling stuck. I felt her wanting, just of a damn dog to pet – perhaps a friend to wheel with.

When we began to speak, Sunaura and I wrestled with the probability of our actions being paternalistic or otherwise ableist. I could certainly hear a change in my tone, at least when we first spoke to the woman. That weird disability tone is similar to the switch people make when talking to a cute dog or a baby – there is distance and it generally feels that it comes in a top-down format. When addressing disabled people, the higher pitched tone sounds like it is not spurred by appreciating cuteness – instead, it comes from a space of discomfort and an attempt to cover it with happy notes. Was my initial tone indicative of this being a paternalistic experience in which Sunauara and I were expressly higher on the disability hierarchy? Or can it be that even the krips who work on their politics and work to hold each other accountable these values – still screw up and express ableism?

It was a complicated emotional experience for us, and it was genuine. There was communication without needing to rely on verbal engagement. Sullivan the service dog speaks without words and opens up space for people to feel comfortable. Having ze around helps me communicate with people I otherwise would likely not speak to out of pure gimp grumpiness from often-fulfilled expectations of ableist interactions with people. In this way, Sullivan truly helps bridge gaps and open doors that I otherwise would absolutely ignore. I love that little munchkin for this and many other reasons.

In hindsight, I would have liked to offer more of myself to the person – contact information, figuring out ways to support her if she wanted assistive devices to augment her communication or whatever else she would like support around. Several months after that encounter, I continue to have no real clarity around this, as I still question if the interaction was overloaded with paternalism and projection. I hope it was a cool moment for her.

Would you have stopped? How do you recommend we engage in these kinds of interactions better? Where is the line between benevolence and paternalism? How do we know the difference between it’s good to offer help and when are we only doing so to make ourselves feel better?’

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A taste of my #CripCooking!

Hello world! I have discovered the art of cooking and it has been incredibly zen addition to my life. Think slow smooth movements in a sand garden, a place where your body can take over and let your mind be free and relaxed (as it can be). There is something to cutting items finely, lining them up and then putting them together to create a visual medley; all of this appeals to many aspects of me despite being new to #cripcooking. The first meal I cooked was on Sara’s birthday – April 16, 2014. It rocked. From there I have cooked a number of dishes and. I tend to cook for than 2 people and take my sweet SLOW time! My most recent favorite was a slow cooker red beans and rice dish (changed: 4 cups of chicken broth, rather than water PLUS two heaping tablespoons of cajun seasoning; also I cooked the beans on high for an hour at the outset and at the closing of the 7 hour crockpot session). It smelled amazing in the house!

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The mobile accessible kitchen all due to this short table on wheels. It is supposed to be used for a computer monitor, with an adjustable height. Sullivan the mighty pup photobombs!

ALL of my cooking is due to one simple accommodation – that my lovely wife found for me. I will post a link for the above table when I have it!

Tonight I am editing a recipe for eggplant caprese sandwiches or inverted eggplant parmigiana.

The marinara sauce, which is still cooking on low, took me one hour to get together! Total anticipated time with this NYT recipe I altered was 25 minutes – yes, there is reality to #criptime! I added a 2nd can of tomatoes, along with a can of tomato paste, doing both fresh basil and dried oregano, and I let my garlic and onions warm more.


Marinara Sauce
 Recipe
7 cloves of garlic minced
1 large onion chunked
teaspoon  kosher salt
1 teaspoon oregano
3 basil leaves
1 red chili
1 can 6 ounces of tomato paste
2 cans 28 ounces of whole tomatoes
Splash of olive oil in pan

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Items needed to make marinara sauce on the crip table

My process
1) 5 minutes to gather items, place oregano and kosher salt in a little dish for ease in tossing into the mix, as well as take a photo of items to be mixed

2) part of my slowness, comes from taking my time in the kitchen and cleaning – some say a clean chef is one you can’t trust, they say the same for thin chefs and I don’t get down with that kind of shaming;

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A close-up from my POV of the stove-top, with a faint reflection of me in the silver mixing bowl to the left.

3) peel garlic and onions – this is one of my favorite parts of cooking! I love the slow parts. I cut the ends off the garlic and push the knife down in hopes that part of the skin will come off – this works in about 1 in 7 cloves;

4) mince these items;

5) place splash of olive oil in saucepan on medium heat – not deep pan – wait until hot, and add minced garlic and onion. I like to leave that for a good 8-10 minutes for the parts to condense and brown a bit;

6) take a dance break;

7) while the the garlic and onions are heating, pour the cans of tomato items together in a large bowl and blend slowly with an immersion blender to your liking in terms of chunkyness;

8) stir in the salt and oregano;

9) pour over garlic and oregano, mixing it all together;

10) submerge 3 basil leaves and 1 red chili, turn to low and let sit for as long as you can wait!


Recipe for Caprese Eggplant Sandwiches

⅓ cup all-purpose flour
2 large eggs, lightly beaten
1 cup breadcrumbs
1- 2 medium to small sized eggplant, cut crosswise into 8 (1/2-inch-thick) slices
a good couple of 2 tsps kosher salt, to taste
1-2 cups marinara sauce (see above); depending on how much sauce you want
extra virgin olive oil
2 vine-ripe sliced tomatoes
fresh basil leaves; torn
4 ounces fresh mozzarella cheese, sliced
freshly ground black pepper

Process
1) Preheat oven to 350 degrees
2) Wash eggplant and tomatoes, cutting both into about 1-0.5 inch slices;
3) take slice of eggplant – dip in flour, then whipped egg, then breadcrumbs;

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Getting stations for dipping eggplant ready to go, Murphy the cat photobombs

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Lovely slices of eggplant

4) place on baking sheet;
5) I often go by when I “smell it’s ready” but with eggplant there is extra cooking needed. Consider 45 minutes, and cut off a piece to taste if it is moist enough to be yummm;

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The crip chef on my armrest to reach the counter, stacking the eggplant, mozzarella, and more eggplant

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Crip chef balancing on arm rest to reach the assembled sandwiches to smother in marinara

6) stack eggplant, mozzarella slices, tomato, basil leaves, another slice of eggplant and covered in 1/4 a cup of marinara;

7) bake collective for 15 minutes or so, you want bubbly melting awesome cheese – however long that takes!! Enjoy! :)


*Domestic Diva Side-Note*

This weekend I washed our dishwasher with 1 cup of white vinegar – just threw it in the bottom and did a hot water wash. The second step in the wash was putting a cup of baking soda in the bottom of the washer to let it sit overnight. After running a simple cycle your dishwasher will be so fresh and less likely to provide spotty glasses! If you have any kind of odor I recommend it, after cleaning out your filter. :)

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Oh, the places I’ll go – and have been!

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The beginning of a wooden path or bridge that illustrates the narrows as the gaze extends to the end of the path.

As is often, I have been away from cripconfessions for quite awhile. Things are changing. I feel the need to confess – or perhaps,  better phrased as “over-sharing” – because I want people to know they are not alone! Maybe this need is spurred from wanting validation so desperately when I was younger. Example: It is kind of sucks not having disability awareness until your in your 20s! Regardless of the source, there is a strong driving force within me to share internal truths that many won’t or cannot say. I receive many emails from people who do not feel comfortable with public affirmation or comment but are grateful nonetheless for me putting myself out there.

I will continue to speak these my truth, and it is time to stop confessing. I no longer desire to confess what others won’t say (out of conformity to social norms), I am ready to state things as they are or at least how they should be. A sage recently pointed out that I don’t need to be the touchstone for grief or shame for others, I can focus on positivity and empowerment and through that still offer support to my comrades! I am still considering how this new voice will be presented on this blog and on my soon to be live professional site – bethanystevens.com. It seems reasonable to expect brazen sexual truth with giggles galore. I am in a point of my life where I want to CELEBRATE life – not always rant about the problems! I want to politicize pleasure as much as pain in my work. Before I give away too much of this blossoming part of me, I want to offer a few highlights in the gap of time since I have blogged.

My first independent scholar speaking gig (October 2013) at Simon Frasier University’s Intersectionality Institute reading group in Vancouver, B.C. I spoke to a reading group. REALLY? YESSSSS! What a freakin’ deal and the sun was out; unlike the last time I was in town. The connection for this gig was through a wonderful student – Sarah Chown (check out some of her blog and Google her for more– who I met while teaching at the CREGS Summer Institute at my Sexuality Studies alma mater San Francisco State University. Goes to show you that you if think networking is only about the people who run programs or are perceived as the leaders in the field, you are missing out on a ton of brilliant enthusiastic people AND exciting opportunities. Tis your choice how to work networking. I recommend genuine human interaction, it feels the best.

Taught in Winder University’s Sexuality Studies Program a disability and chronic illness sexuality graduate course for MSW/PSYD and Sex Education students (March & April, 2014). It was awesome to be back into the classroom with sexuality people, it felt like my many times teaching in the Bay Area. I have extreme gratitude for the class for the willingness to teach to reach this subject and figure it into their work. And, like most dorks, right after the course ended I made mental edits for the next time teaching. Eeck new assignments! New readings! New podcasts! New thoughts on promoting access!! The guests in the course and the inclusion of media from the web and videos made by the krip, crip, and disability communities are aspects I plan to retain for future teaching. By inviting folks physically and technologically (Skype) into the class, as well as via media – I tried to move away from one of the problems I experience in teaching (disability) identity politics, in which the students get stuck on disability = Bethany = wheelchair. Both modes resonated well with the students and gave more fodder for thinking about nuances in sexual identities among the global landscape that encompasses disabled people. Because these were sexuality graduate students and I was not in the south, I could use, without fear, sexually explicit teaching tools! I taught KRUTCH, including a talk with the film’s director Clark Matthews and it’s featured actress Mia Gimp. I recommend this film, Loree Erickson’s work, and the forthcoming films (Un(dis)sing our Abilities, as well as Lyric Seal and Jiz Lee: Going Here). If you know of other films featuring hot disability sex, please do let me know – many sexologists need these films as part of educating others particularly through Sexual Attitude Reassessment (SARs).

Visiting NYC for a bestie’s birthday (March, 2014) after an 18-hour teaching weekend, followed by a three-day jaunt in DC during a snowstorm was awesome and overwhelmingly exhausting. NYC moves too fast and it feels disconnected, as though people might walk over me. We played chicken with some teenagers on the sidewalk – urgh! Sullivan didn’t appreciate the city much either. Ze shivered with terrified energy as we rode the bus for over an hour (because the subway is not wheelchair accessible). Every time we set wheel outside the door, Sully would start to pant in fear. Washington Park was close to home base and relaxing (big ups to my girls in Broad City – this kick ass friendship show could use some disability humor – pick me! me! me! me! me! me! me!). The food was amazing, and vegan for the most part.

I came back from the trip inspired to cook and have been since then. It has been an amazing life change to start cooking, and the bit I feared the most: chopping – is totally fine! Somehow I am more delicate with cutting than I am cleaning. It’s a beautiful thing. Also, memorizing recipes and just guess/gauging ingredients correctly ROCKS my world! It’s a feeling I never thought I would have. Many thanks go to the birthday cripLOVE beautiful artist Sunaura Taylor, with work in the Smithsonian, that continues to challenge disability and animal politics with a subtle social aggression, demanding change in thought toward beingness. I like most of my food and it’s pretty – so that bodes well with my Libra living. My ranting and near crip howling was validating to my crip comrade living there, after struggling through a rather brutal winter. Being around for her birthday party was a gift to me! My favorite part of the trip was sitting on the couch for a few hours talking. Our fur children were calm and crip bodies got to relax in the comfort of kripLOVE!

Invited talk at Composing Disability Studies (April 2014) to join a panel with performance artist and disability justice leader Leslie Freeman and disability studies rock star  David Mitchell. Our talk was called “crazy sex” – something I am still not digging on. It was meant to be tongue in cheek, playing on the word diagnosis being interpreted as queered or cripped (re: subverted/f-ed) – but something continues to read as a bit fetish and certainly not pro-disabled-sex. Ah abiding by the rules of syntax should make a person frustrated. My talk was a fantastic purge of emotions, a call for suicide prevention and saying things that I feel like have been bottled for too long. Leslie and I spoke so powerfully that David yielded his time to us. It was an incredibly generous act from someone who is a big deal in the field of disability studies. There was a bit of fierce femme pride mixed in there – with a belief that we would naturally take up the stage and dominant the heck out of it. Meeting new and old friends – cripfamily FTW!!!!! – made the experience even better. I plan to share the videos as soon as they are finished being captioned – ACCESS PRAXIS for the win! Much love to our wonderful hosts and my co-presenters.

Presented at Frolicon about disability and BDSM with Robin Wilson-Beattie (April 2014). It’s always fun to play dress up and set in a space encouraging people to think adaptions to the process of play, as well as processing through expressions of frustration about access issues in play. I can really only handle that crowd for maybe 4-5 hours max, it entails serious sensory overload with cosplay, nudity, etc. The furries are sadly not of interest to my wonder-pup Sullivan.

Keynoted the Intersectionality International Conference – Research, Policy and Practice: Influences, Interrogations & Innovations  (April 2014) at Simon Fraser University in Vancouver, B.C., alongside wonderful scholars and activists, including Patricia Hill Collins. It was a thrill to be there, as the energy was strongly moving in a “we can change the world” kind of way. Must give props to all the conference organizers, including Intersectionality Institute Director Olena Hankivsky, reading group co-director Nicole Clark, and general rockstar Gemma Hunting and all the students who made sure to ensure access was taken care of. The truth is I have NEVER felt so cared for at a conference, ever! They are amazing hosts! It felt invigorating and a bit overwhelming. There was a noticeable, though not surprising, gap in disability discussion. And I had a major freak-out when I didn’t see the ramp to the stage prior to my talk – though it was portable and hidden. I should have asked what the heck was happening before flipping out. Instead I laid in my hotel bed with back pain. Sara came with me (getting her second passport stamp!) and enjoyed her time Canada playing shameless tourists. A few times we managed to pass as locals which made me feel so freaking hip. Writing that sentence reveals how unhip I am. (More on the intersectionality conference to come in an upcoming post).

Chaired the 46th Annual AASECT Conference (June 2014) thus completing two and half years of professional service with the organization. I am still working on their social media but there is a large gap in my life now that I am not receiving countless emails and on conference regularly. Good grief, conference calls and hearing problems – super fun. The conference was a wonderful success and I especially LOVED hearing from leaders in our field discuss where we need to go – how to make the field a better place for all of us, which has always been my goal. I felt inspired and excited about new ideas, and exhausted from running around in professional mode.

Hosted a BodyLOVE Photo Shoot with audio guru Jim LeBrecht (June 2014) at Fantasy Studios (where Etta James, Green Day, Miles Davis, Too Short and countless others recorded, as well as many multimillion dollar films had their ound edited). Starting as a random late night FB post that my photog brother from another mother Michael Mullady would traveling to the bay and I wanted to do a shoot of people who are often socially taught not to love our bodies because of disability, size, age, race, gender presentation, etc. The event snowballed into something bigger than I imagined when a kick ass social justice filmmaker Regan Brashear offered to film the process. My comrade Jim, being the veteran of the industry, brought in his colleague and creative director Jed Riffe to capture more footage of the process. For fun I invited performance artist and spiritual femme Vagina Jenkins to style the people at the shoot. It was so much fun to get to feel so pretty! I want to learn her methods!

I wanted this to feel fluid, and it was perhaps too fluid. Though I doubt there can be a regimented space to ask people to reveal themselves – their stories and their bodies. After completing the shoot, I feel like I would work on structure more the next time but I also wonder how to get a bunch of people in one place at one time to have deep conversations with strangers and possibly get naked. It’s a lot of upfront intimacy expected in a quick amount of time. What we experienced was beautiful. The process made me feel more connected to a coalition community space (including deepening connections to Jim and Regan, as well as making friends with some fierce femmes who have influence by work) and more comfortable in my body. Coming soon will be edited footage and images from this fantastic happening. Much much gratitude to the artists who gave their time and my comrades for sharing themselves with this process!

Grateful to have a wonderful wife and other chosen family sticking with me as bounced back from professional and personal losses (throughout my life – SH*T happens!). I won’t spend time speaking of the feelings of loss I have felt this year, as I have spent many months processing through it. It feels like water I have waded through and reached the beach. I’m a little tired of talking about the water tastes like, and how much energy it took to get to shore. The people who really care are there, especially when things get rough. My mom gets big shout-outs for rocking her growing love and support of the love Sara and I share. After breaking my thumb this summer, I also realized how much she taught me about dealing with OI: specifically recognizing fractures and rehabilitating body parts after fractures. It’s feels autonomic but I know she trained me with her nurse + OI mom ways! Ah, warm baths have been a life-long needLOVE and where I’ve moved my broken bones for the first time.

What’s next: Continuing to explore cooking new dishes, write about cripping domesticity, exploring video narrative sharing, getting a new wheelchair (hey, it only took a year for insurance to approve it! It’s here and I am reluctant to transition), NEW BLOG POSTS!!!, figure out which book to write and write it, along with working to find my way to be healthiest on my path. It’s time for my revolution. I trust the universe and its plan for me. I. AM. Grateful. Especially for YOU!

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

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Image of Bergen public artist’s work: a large wheelchair and a person walking like a zombie away from it on the side of a brown building by the water line


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! Continue reading

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Finding YOUR krip body desirable: notes on internalized ableism and self-lovin’

Dear KripFamily,

Sending you kripLOVE, first of all. Thank you for allowing me into the circle of those you trust with a part of you that you don’t share with many others. I write to you from a place of solidarity, as a hot krip who has been passed over, deemed a friend (at best), and struggling for what seemed like forever watching from sidelines as my friends picked up folks with great ease while I sat sexually frustrated and pissed off.

The world is so fucked up for not loving and seeing the sexy rawness of our disabled bodies. We are some of the sexxxiest folks I know and I love that I finally see that. Every scar, curved bone, wobble, different type of movement and mode of thinking make me feel smitten with krip people. As much as I hope/d the world would have a different conception of disability and sex at this stage in life, I have to deal with the fact that I’m not sure this is going to change in our lives. And that whether we like it or not, no matter how fucking exhausting it is – we may have to continue to work to unravel negative perceptions of our sexuality, worth and beauty, among other human rights.

Even though bell hooks is an ableist – or seemed that way in one of her talks I saw – I dig this idea: love, like social justice, is an ongoing process, one that we make a commitment to work toward every day. When we talk about love it is not just with other people, but ourselves. I find her piece on loving blackness to be really useful. Doing mirror work has helped me too – nudity plus some questions about what you love about your body & what you would do differently if you really loved yourself. But you know my basic truth, it doesn’t matter how much I have changed through working on disability politics since the self-loathing, suicidal, closeted queer teen – I still struggle to consistently see myself as beautiful.

At a recent conference for folks with my disability, I found out about a camp for OI young ones. And I feel like a big thing I want to tell them is that you will love yourself, not every day but many days – and it’s absolutely great to revel in that. Something I never believed and am just started to be able to take in at some moments.

I’m sure this is all stuff you know, but for me – it was the catalyst to start seeing me as beautiful and some date worthyish folks (i.e. people who didn’t fetishize me or tokenize me for fun). I also had a really nice relationship with a woman who showed me I could be treated well; something I didn’t know until I was 27. She was a fellow krip; some of my krips partners taught me a lot about deeper kripsex politics and how to love myself. Other forms of resilience I use to fight against ableist conceptions of my lack of desirability or sexuality is by socializing with disabled folks – it keeps me validated in my experiences. The Bay Area really makes me feel like I breathe better, just like after therapy. I recommend an annual trip or whenever you can, to be in area where you are NOT the primary subject of the gaze = such a nice vacation from some microaggressions.

In close, YOU (all of you) are hot, brilliant and love will come to you when the universe knows it is right. (I really recommend talking to the universe about what specific traits you want in a partner. I did this for 8 months to a year before Sara came along and I got the most important things I wanted in a partner. Also, try to trust the universe will bring you what you need, which may not match exactly what you want.)

Also, I know it is hard to reveal this side of our criptastic selves to the world but I really think there is tremendous value in it. Since revealing self-loathing as a teen and my continued struggle with internalized ableism, I found that people feel more comfortable expressing that with me. By making myself vulnerable, I help open space for people to talk about their hidden truths and things that make us feel shame. One person said to me recently they had been waiting to hear what I said about internalized ableism and sexual esteem her whole life. Additionally, being the crip confessor creates an honest safe space and pushes back on what we are “supposed” to do in disability politic chats – by making the body politic all the more complicated, nuanced and fucking delicious. Eli Clare said it beautifully when he stated “we need a body politic as complicated as our bodies” – and we should add minds. None of us will fall from the pillar of being a cripsex god/dess, people would be able to see that we are human and struggle with the fucked up nature of ableism and sexism (and the rest of the aspects of interlocking systems of oppression). And that even the coolest, hottest, most brilliant have a hard time finding good loves or even being viewed as sexual (or a full human).

These are my thoughts now on how to deal with the pain of being socially perceived as undesirable, looked over by people who seem interested and just wading the troubled waters of ableism. Though I will add: please try online dating (try dating outside your friend group – some people are so hungry for better [disability] politics they have no idea, until someone like us comes along)!!!!

muchLOVE,

Bethany

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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.

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Learning about KripLove from Krip Hop: Part 4 – What’s in a Word?

One of the big issues before and after the Krip Hop Nation event was the language of the movement – specifically the use of the word ‘Krip.’ Many scholars and activists in the disability communities use the term ‘crip‘ in a reclaiming political sense (explained more in my about me section of this blog). Leroy Moore shifted the spelling to use a ‘k’ to distinguish Krip Hop Nation from the LA gang – the Crips. This is due, in part, to work against the racist assumptions held and expressed by many people that those who are black and disabled, must have become disabled through being shot or other forms of (gang) violence.

Regardless of the spelling – Krip/Crip – these words are inflammatory to many. Many disability scholars and activists have reclaimed these words as a form of verbal assault against the institution of ableism through defusing the history of hate in these words. Whereas, others in the disability community are adamantly against reclaiming these words and insist upon only using people first language.  People first rhetoric requires one referencing a disabled person as “a person with a disability” to signify the disability as one aspect of the person’s identity but not the central or defining featuring of it. I do not live by the people first imperative but do appreciate its purpose; more people should see disabled people as *gasp* people – not just as objects that they can violate and exclude. People first language is all fine in theory, as I agree with the idea that disabled people should be recognized as people and I explain it to my undergrads because, like the social model of disability, I think these linguistic tools reflect the first steps in disability consciousness revolution.

My real problem is when people first politics begin to impinge on the ability of freedom of self-identifying labels. *Ahem* the First Amendment. As I explained when Bridget the Midget (former adult film star) keynoted the University of Florida disability and sexuality 2005 conference – while the word ‘midget’ is abhorred by many little people, if Bridget wants to identify as a flaming turd, she should (and does) have the right to do so. We should all be able to call ourselves the labels we need to and that feel right for our realities.

From the beginning of discussions of bringing Krip Hop Nation to the university, people were uncomfortable with the language. I was asked to change the title, but refused because it is not my movement, and I will not engage in an act of oppression of labeling something that is not mine.  The university refused to label the event correctly on the event page of the University homepage because they were afraid of giving off the wrong impression about the University. I explained throughout the pre-event discussions that Krip Hop is the language of the artists, and it signifies liberation to them. Therefore, they should decide how to label themselves, not us (as historically has happened with marginalized groups of people), but ultimately it didn’t matter – people tried to censor the name but Krip Hop Nation remains Krip Hop Nation. It will not bend to the whims of people not pushing this killer movement forward.

It is of note that an interesting dichotomy popped up with the language issue. Many people first language advocates were pumped about seeing Krip Hop and talked about it. In doing so, they used disabled first language. Thus, in a not so subtle way, Krip Hop Nation helped push people to consider language without an aggressive confrontation. Moving past what might have offended some; they saw how cool the idea of hip hop and disability could be and wanted to see it for themselves –which was evidenced by the diverse crowd in attendance. Also, a large somewhat conservative disability conference in Georgia is now courting Krip Hop Nation to perform at their event, even though they may not really be ready for Krip Hop Nation. Isn’t it beautiful how art can be part of our revolution?

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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.

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