Transubstantiation, by Anonymous

I feel self-conscious trying to talk about transition because I don't have the intention of taking certain steps, and because the fact that I don't want a name change makes me feel like I stick out. The fact of the matter is, there are going to be no easy solutions. I am not one thing, I change, and as I try to find the best possible combination of strategies for navigating the world, I can't help but feel a firm conviction that I must get the testosterone out of my system. I don't like the way it adds to my aggressive fight-or-flight tendencies, and when I feel most in tune with my biochemistry as it is now, I am most prone to doing the things I least identify with. As I have sought to dismantle my unhealthy strategies for dealing with the world, I have felt less and less capable of communicating with my body's shape and… texture… as it is currently constituted.

The fact is, I want to be called "they" and "she", but I don't have a particularly strong interior need for it, it's more like not being seen makes me just disengage from the people around me. Like, if you can't see me, then why should I even bother to include you in my messages to and with the world? For a long time, that seemed like a way to be, but it made the world very small. Getting the outside world to acknowledge and to create the space for me that is me-shaped, is about participation. When I am alone, like now, the biochemistry that gives me such trouble is nothing. In the kayak, on the water, the body I have is my body. I make it sing, and the things I do with it produce such wonderful sensations. In those places, I am not disabled because the way I process the world is not limited by the ways I need to be able to interact when my attention is demanded by others.

Kassiane wrote something about where she is and is not disabled that really resonated with me when I was first coming to terms with myself. In those days, I tried to find blogs by female autistics because I was very aware of the fact that I didn't think like male autistics and I had already made the choice to abandon my first run toward transition. When I read that piece, it made me think less about my communication issues, as profound as they were in many situations. Instead, it made me think about why I played women in games and always gravitated toward female-led spaces online. It made me think about the places where I felt like it made sense for me to be, and why my natural instincts led me there. At the time, I was also starting to read a lot of trans feminist work, because I felt like my ability to give up made me, definitively, not one of them. Still, because I had tried, I wanted to learn to be a better ally.

I have hurt myself in so many ways with a callous disregard for my own body's attempts to tell me what to be. I don't have a lot of ways of expressing how the burden of memory or the process of my background created a rubric of the self that was so resigned to the idea that life had to be constantly awful. All I can really say is that I had a unique set of circumstances that came together to make me terrified of expressing my terror, lest its sources be interrogated. I don't know when the first time I heard an anti-trans slur at a family gathering. The word he-she was something the adults had bandied around in conversation in front of me by the time I was five. I distinctly remember, about the time I noticed leg hair, my father talking about his failure to understand "those things" that were willing to settle for never being right as either. About how he "had one" at his work.

I waited every day for my voice to change, and I tried to tell myself the terror and the crying was just because I was nervous, because (as my parents said repeatedly), hormonal changes made people emotionally unreliable and my teenage years would be painful and make me do and say stupid things. Looking back, their entire approach to adolescence seems like it was designed to make sure that people like me turn in on ourselves, and I did.

The ironic part about reviewing my past as I come out about my transition is that there were so many ways that I was a cliché of female teenage emotional disturbance in the nineties. My early adoption of BDSM lifestyle fashions was only months ahead of my first flirtation with surrendering autonomy and consent to a partner. I cut, uncontrollably, and actively sought out romantic partners who would not judge me and at least one who openly helped me to eroticize the sensations. I got into a series of lopsided friendships with people who understood my problems and took advantage of them to maintain control over our social relationship. Some of them were people I felt deeply for, romantically. Some of those were unrequited. Eventually, I developed an eating disorder. Then I cut off all my hair, attempted to talk myself into transition, came out of the closet instead, right before cycling back to bisexual, and had the kind of friends who viewed me as deceptive for this. Luckily, as I lost them, I forged what would turn into my relationship with my partner.

In the early years, I took a lot of damage in the name of making safe space for her. I knew I could, so I did, and I was willing to do it because I could tell that the way she hurt me was not like the way other people hurt me. It was because of things she could not stop, but that she worked against. They were because she had the same flavors of trauma in her past, even if she had different experiences. So when I took that pain, the transubstantiation into eroticism was easier to do, and I learned with it, and it grew. There were times we were driven apart again, and in those, I was still too hurt from my early relationships to begin to approach gender again. When I was fifteen, I had spent time in skirts and had approached makeup with my family, but the restrictions put on what I could use and where I could go, how I could express myself and what it would mean, they made me surrender to their restrictions by freezing. After ignoring them and thinking I could get away with it, my father shut me down so hard that I could not make myself up again without crying. And it didn't help that the girl who had enabled things and got me dieted down until we could share skirts decided conventional khakiness and Abercrombie and Fitch were her thing instead, and she didn't really want a skirt wearing weekend-tripping fishnet clad boyfriend who had more cosmetic practice than she did. And when she demanded, I did, because she was still an alternative to the people who had shut me down to begin with.

Sometimes, I think the only reason I'm still alive is because of the suicide of a family friends. There have been a lot of times I've been with death, with visions of ways that I might end with just a flip of the wrist again, and then an embankment. Those visions are almost never near now unless I conjure them like I did when writing this, but there was a time that they were riding beside me through everything. And to be honest? Those times were pretty much every moment from when I let myself give up on getting into my first girlfriend's leather skirt again until the first time I decided to demand movement toward transition. This might seem sudden, but it's something that I spent every day trying to not keep track of the number of days since I'd considered it.

I didn't always identify with girl things, and I still don't in a lot of ways and times. It's more like there was a tightness in my chest whenever people tried to divide us into those two groups, and the one I got pushed into always seemed like the not-so-best of the two. Today, I know what that means, and it makes me reluctant to use words like woman, even if I am looking for a chance to change my whole system to estrogen. And that gives me trouble when I try to approach services, too, because I know what a lot of doctors think of people like me, because after all, there are some doctors who said some of the awful shit right here in my family. And so, even though I can't really tell how many of the people around me are going to be like they've been, my brain can't give up on the idea that my doctors are going to be people like them. And so, away I go again.

This is my rumination, and it burrows so deeply into my brain that even when I don't feel close to suicide and I know why I left her sleeping alone in that bed, it still stalls me out and makes me spend days feeling like I am my tasks, not really alive so that I don't have to contrast it with being dead. And then, too, I lose time. I grieved the beginning of my change at twelve, and I tried to embrace the bass in my voice even though I couldn't be in love with it. And then I tried shaving everything at fifteen and taking advantage of constant walking to stay lean and get into my favorite clothing, only to be shut out of it. I redid a wardrobe to attract men and fell into a swirl of club douche and drag queen in my early twenties, and I felt constantly jealous of my friends who did dress up, but I lacked confidence and made about ten thousand dollars a year, so makeup was not in my economic picture.

By the time I was twenty-five, it was just enough to work on that grad appointment, to learn a profession, to get into a situation where I could protect us. In the in-between, I got a vasectomy and started crying when I found out it couldn't really lower my testosterone, because if it did that would have given me a way to talk about just giving up on male hormones and going with an alternative in pill form, but with that out of the picture and our money situation so tight I had to get a grant to get my three hundred and fifty dollar surgery done, I gave up. And then, I graduated in 2008 and fell out of the job market and into steep debt and no savings, and I gave up again.

Somewhere along the way, I let myself give up. I let myself think that being autistic and prone to gender perceptions that were different (shown by a preponderance of the studies on the subject), I let myself pull away from it, to embrace the idea of just being a different kind of masculinity… and then my body rebelled against me. I have broken so many pieces and lost so much mobility. I am over a hundred pounds heavier than at the point where I was ready to transition before (although honestly, I'd developed an eating disorder again by then), and only recently have I managed to get full feeling back in all my limbs. I have spider veins now, and at least one or two scars caused by wearing clothing so tight it cut off some of my circulation. I had periods where I couldn't afford to change that.

I know my family would probably say that if I'd talked about this to them, then they would have helped. At least with basic things like learning to credit or needing extra help navigating things. I've seen their help, though, and I would have been lost in it, with my life a collage of their decisions and the same eroticism with death at night, alone, when other thoughts have gone to sleep and she is the only one awake and horny. I have survived by maintaining autonomy, and by seeing that the temptation that snuck into my room when I had to sleep around my family was destructive to me. I have moved past that.

So, I don't feel particularly like I have a strong attachment to my gender. But I know what hasn't worked for me, and I know what my body wants, and I simply have to ask: if gender is something that is going to be done to me, why not at least let myself move in the direction that my natural inclinations lead other people to classify me in? And that's really the secret of it. The horror I face daily is not feeling like my body doesn't fit me, it's feeling like the reactions to that body, and the communications offered to it at every level of interacting out in society, are disproportionately out of line with what people should be seeing.

I fear being evaluated by conventional psychologists because I have always built my identity outside-in, and there are a lot of people that seem to view that as unhealthy, but I can't be any other way. My self is built by doing what is comfortable for me, and then labeling it according to the concepts provided by the society I'm in. Transition doesn't mean changing me, it means finding out how to do the last few things that will lead the labeling others do when they look at me to be more accurate.

I'd like to call bullshit on myself at this, but there are some things that can only be approached, and some aspects of having multiple gender presentations to be negotiated in different circumstances that beg you to look at the literal words used in the sentence and draw inferences, because there are some topics that are still too far outside my ability to find words for that will be accepted as competent.

I feel uneasy, but the story is telling.

Telling Our Stories: Why I Launched the Disability Visibility Project, by Alice Wong

This year, we commemorate the 25th anniversary of the Americans with Disabilities Act (ADA) and recognize the achievements and progress of people with disabilities. While I appreciate the labor and sacrifices of generations of people in the disability rights movement, I can’t help but have a slightly jaded view of the ADA festivities in light of the current status of people with disabilities.

Despite the passage of the law, disparities in healthcare, education, and economic security continue to undermine the ability of people with disabilities to live in the community and to fully participate in every aspect of society.

I wonder how it is that in 2015, the labor force participation rate for people with disabilities (31%) is less than half that of non-disabled people (81%); that people with disabilities who use Medicaid-funded personal assistance services are unable to move from state to state without risking a reduction in their services; that people with disabilities who receive Supplemental Security Insurance (SSI) cannot save for the future because they are hindered by outdated asset limitations, which needlessly trap people in poverty; and that people with disabilities can face marriage penalties due to Medicaid and SSI policies regarding income and assets.

If the mission of the ADA is to prevail, these counterproductive policies must be reformed. 

Because how else can some segments of the disability population fully participate in society?

Challenging these insidious public policies requires listening to the stories and experiences of people with disabilities—and dismantling the idea that living with a disability is either something to be pitied or an inspirational act.

To that end, I often share my own story as a disabled Asian American woman and a person who uses consumer-directed Medicaid personal assistance services, arguing that these services are a basic human right. It was with that goal in mind that I also launched the Disability Visibility Project (DVP), a community partnership with StoryCorps. The project encourages people with disabilities to record their oral histories and to foster conversation on the lived experience of disability.

The following are just a few of the many stories we have collected through the project:

Ingrid Tischer on disability and work

… if you don’t have a disability, you know, basically you are encouraged to always present yourself in terms of what you can do. That’s your identity, hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. It feels like the message that a person with a disability gets is your identity is based on what you’re unable to do.

(For extended audio clip with text click here.)

Mia Mingus on disabled women of color and able-bodied conceptions of work

So what does it mean then to be a disabled woman of color and to really be like, putting forth questions around work? And what does work mean? What does it mean to be a woman of color who can’t work? Or who is not able to work as much, right? And like, in some ways I feel like it’s totally oppression that like makes us work harder…I think about that a lot around like, yeah, disability and aging.

(For extended audio clip with text click here.)

Yomi Wong on economic justice and people with disabilities

…I think the next frontier, and I know that there are people working on this and talking about it, so it’s not like some nuanced idea is really economic justice for people with disabilities. I mean, we are among the poorest of the poor in this country, the most unemployed or underemployed demographic and you know, I think economic justice is really the next fight, and it, it’s the fight now, right? And it’s the fight in the future.

(For extended audio clip with text click here.)

Economic security is indeed the big elephant in the room when it comes to disability policy. Everyone knows it’s there, it stinks, and few have the political will to do anything about it. All the while, people with disabilities are being left behind. Storytelling is one way to change this dynamic.  By gathering individual narratives into a larger collective voice, we can provide a sense of urgency, and push for a transformative shift in the relationship between the state and people with disabilities.

All researchers, policymakers, and activists have a role to play in creating social change and expanding opportunity for people with disabilities. But the lived experiences of people with disabilities must be at the center of that process. I encourage people with disabilities to record and share the stories of their lives, and for people who work on disability policy to learn from our stories as we work to further inclusion and justice over the next 25 years.

Alice Wong is a Staff Research Associate at the Community Living Policy Center at the University of California, San Francisco. Currently, she is the Founder and Project Coordinator for the Disability Visibility Project. Alice is also an Advisory Board member of Asian Pacific Islanders with Disabilities of California (APIDC) and a Presidential appointee to the National Council on Disability.  

For more information about the Disability Visibility Project:

Website: http://disabilityvisibilityproject.com

Facebook: https://www.facebook.com/groups/356870067786565/

Twitter: https://twitter.com/DisVisibility

photographs by Barbara Ruth

Calla Lily dreams: Manipulated Photograph: Picture of a calla lily with the colors changed. The majority of the picture is the leaves, which are primarily midnight blue with some red. There are two flowers, in ivory. One is open, and one is closed. The open one is just a suggestion of flower; no detail. In the upper left of the picture is a cream wall with some flat blue beneath it. All of the colors bleed into each other a bit and there are hints of red in the deep blue of the leaves and on the wall, and touches of the lighter blue in the ivory opened flower. The leaves which are articulated against the wall sway to the left.

Calla lily and wooden fence: Manipulated photograph, rectangular, twice as tall as long. The background is a wooden fence, with burls in the wood and light seeping through between the boards. The burls are phosphorescent green. The tops and bottoms of the boards are lighter in color than the deep brown of the middle section. In the foreground half a dozen calla lily leaves are vibrant violet with lighter blue-green tips. Two leaves have more blue and green than violet. The one calla lily flower is mostly closed, in side view, near the center of the plant, and is cream-colored, with some white.

Daffodils: Manipulated photograph: Three soft black daffodils with deep blue centers are in the middle of the picture surrounded by lilac leaves and blades of grass. The lilac cross in front of one flower, behind the other two. All of the edges and especially the lower right, are lighter, the lilac fading into cream, the general background color.

Road Trip: Manipulated photograph - Image is twice as tall as it is wide. Most prominent in the picture, slightly to the right and below the center,  is an antique car,perhaps from the thirties, four door, black or dark blue, in cherry condition. It is the only car clearly  visible on the 4 lane road.  It appears to float on the surface as it goes around the surface of the road, which repeats faintly at least twice above and below the main road. A line of trees follow around the curve of the road, on the outside, on the right. The right top of the picture is a white opening, indicating sky, and large grey-green hills which extend beyond the frame of the picture. In the top left the entire image has been rendered kaleidoscopic, doubled and shrunk.The effect is two circles, one on top of the other, perhaps resembling eyes. The place where they meet is the starting point of the strip of white which stretches above the hills.

Totem of Cactus and Stone: Manipulated photograph - Picture is twice as tall as it is wide. An image of a cactus with stones and leaves on the ground near it. The image has been mirrored, so all aspects are symmetrical. The cactus (cacti) is a little above the center and bright green, the most vibrant color in the image. The rocks and leaves above and below suggest masks, idols, totems; their colors are various shades of green, from dark moss green to pale lime green, and also beige and tan.

When Chamomile Gets Witchy: Manipulated photograph. The camera looks down on a chamomile plant, which is greatly enlarged. The ground is rendered steely blue, sparse curling lines of midnight blue are the grasses and weeds. Eighteen buds of chamomile raise their cerulean heads, above their lavender bodies. In the lower right some stems have no buds. In the upper right the surface (the ground appears thicker; these are twigs, some of which lie under the chamomile buds. A faint circle can be seen slightly off-center, this area is slightly lighter than most of the rest of the picture. 

Artist Bio: Barbara Ruth is an old lesbian who learns all the time from the Neuroqueer community.  She has epilepsy.

My Bipolar Pain(t) by David A. Feingold, Ed.D.

(Artist's Statement: I feel I am fortunate to have bipolar disorder.  It contributes to my uniqueness and not only forces me to live with imperfections, it redefines them as necessities.  I am bipolar and proud to the extent that I refer to myself as a bipolar artist as opposed to a more conventionally acceptable form: "an artist with bipolar disorder."  Yes, at times, it pains me to have bipolar disorder, but shirking from its overriding place, influence and effects in my life, pains me even more.  As the title of my image suggests, we can't paint over our pain with euphemisms and minimizing its close ties to our personalities, as it only muddles our self-perception and creates confusion and doubt concerning who we really are.)

Visit the artist's Web site: http://www.feinart.me/