Tag Archive: disability


Political Economy of Disablement

Filed Under: Uncategorized, ableism, disability
May.01, 2010

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.

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Crip on Crip Action: Scholar-Activist Love

Filed Under: Uncategorized, ableism, disability, interable, relationships, sexuality
Mar.05, 2010

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

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Getting Emotionally Naked: Notes on an Activist Voice

Filed Under: ableism, disability, internalized ableism, sexuality
Feb.19, 2010

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).

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Paying for Pleasure: Interrogating Sex Work for Crips

Filed Under: disability, relationships, sexuality
Feb.14, 2010

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

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

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

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

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

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

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

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

While I do not completely embrace subsidies for sex work for disabled people or the media representation thereof, I do think they assert the truth that all people need and deserve mutually satisfying sexual pleasure. If policy-makers are to engage in this topic in a just way – I encourage following the Australian model, in which brothels are made accessible and sex workers collaborate with disabled people to meet their needs.  360 Documentaries did a good piece on this subject.

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

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

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Thoughts on Interable Love at a Breaking Point

Filed Under: ableism, disability, relationships, sexuality
Feb.03, 2010

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.

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