Disability and Sex Advocacy Paper

Disability and Sex Advocacy

         This paper will examine the relationship between sex and disability. Whereas standard social attitudes minimize the agency of disabled persons in sex, this paper advocates for the reclamation of their agency in romantic relations and their portrayal in media. It will also analyze articles, documentaries, blogs, and academic papers to examine changing attitudes on intimacy, disability, and representation.

Disability Rhetoric

In Judy Z. Segal’s paper, “Sex, drugs, and rhetoric: The case of flibanserin for ‘female sexual dysfunction’ the author examines conflation and misrepresentation by pharmaceutical companies in promoting a flawed sexual dysfunction drug. Flibannserin was marketed as the “female viagra” under the trade name Addyi and was designed to boost faltering libido in adult women. However, all stages of defining the ‘disorder’, to researching the efficacy of the drug, to calculating the risk, were conducted in such a manner that minimized the agency of women in their own sexual lives. Why might a woman over the age of forty begin to have a lowered sex drive? The creators of Addyi would have us believe the cause is a physiological, neurological dysfunction akin to male erectile dysfunction. Even with male sexual subjects, data indicates that is not so simple. Men are just as likely to misattribute the physiological versus psychological causes of sexual dysfunction. Research conducted at the State University of New York at Albany indicates misaligned interoception [1] at the mere suggestion that the placebo was either an erection-enhancing or erection suppressing pill.  

[1] Interoception is the perception of sensations from inside the body and includes the perception of physical sensations related to internal organ function such as heart beat, respiration, satiety, as well as the autonomic nervous system activity related to emotions (National Library of Medicine)

Segal questions the flawed methodology and assumptions of the pharmaceutical industry in defining sexual dysfunction, conflating the decline of desire for penetrative sex as inherently disordered. The proponents of Addyi failed to consider that such women may still find orgasm or satisfactory stimulation through masturbation. They failed to acknowledge the role of mental distraction or psychological distress in suppressing sexual appetite, and labeled the general unwillingness of women to comply with their partners’ advances as being a symptom of a disordered mind. According to Segal:

No one asks if women who don’t reach orgasm with their male partners do reach orgasm when they masturbate – or if they are aroused while reading erotica. No one asks if they really expected their libido in their 40’s to match their libido in their 20’s – or their desire for their long-time husbands to match their desire for their newly wed ones.

Segal identified the female-centric challenges that Addyi proponents should have been exploring and disputes the flawed assumptions that exclusively emphasize male agency in sex. Is this sex dysfunction brought on by an actual medical issue or is it simply that society has taught us to expect a certain type of libido through our lives - or - a duty to perform and pleasure our partners. Sprout thus exemplifies prevailing social attitudes toward sex, portraying it as a person’s duty to ‘fix’ their sexual hang-ups and perform, via the aid of a pill.

Prescribing a solution, especially one that must be taken every day and only has a small chance of working, seems like the wrong type of advocacy these women deserve. Slapping a medical band-aid over a perceived issue that is clearly concerning to a number of women, an issue that deserves a real investigation and answers. In a later section of this essay, Personal Narratives, I come across the story of a disabled woman talking about her struggle and sadness when it comes to knowing her partner is aroused yet being unable to satisfy those desires. Whether Female Sex Dysfunction is a disorder or disability or mislabeled phenomenon of the marriage going stale, its resulting frustration impacts the relationship around it.

The self-perceived failure of the women who rallied for Addyi seems to signify toxic responsibility, this idea that they alone must swallow the pill and fix what women and their society views as wrong with them. In “Come as You Are” by Emily Nagoski, the author explains the science and psychology behind sexual desire, . and her analysis more correctly diagnoses how declining sexual activity and desire are nuanced and individualized. She emphasizes how sexual communication and miscommunication lead to varying degrees of function and friction within the relationship. And while Nagoski did not touch heavily upon the idea of Female Sex Dysfunction, she did give countless stories of her clients and peers struggles to understand their partners bodies. She explored the different causes for arousal people feel: some who desire sex when stressed, some who are too exhausted to even imagine sex, and some who struggle to be mentally present for sex. In many of these cases, each partner felt personally responsible for the failure to initiate what they viewed as satisfying sex. Nagoski speaks of imagining our views of sex as a garden, in which some ‘seeds’ planted during development may germinate into certain attitudes and behaviors, such as shame around masturbation and guilt at non-procreative sex. As we grow up it is up to us to decide what stays in that garden, and to communicate to our partner how best to tend to our special garden. Like Segal’s questions on whether or not the ‘sex dysfunctional’ women were able to self-pleasure, Nagoski’s book wants us to explore what sparks pleasure within us.

Not all plants in the garden are healthy, some suck up all the loving water that would otherwise nourish our positive self-perceptions, and our sense of agency in the bedroom. Segal clearly demonstrated how these unhealthy vines choke the discourse of sexual agency.

Part of Even the Score’s[2] message was that a drug that made women interested in sex would be good for the country: it would save marriages. In June 2015, Amanda Parrish (whom we met on Nightline, and who, also in June, authored a Time Magazine article  on her clinical trial experience) was the focus of a story at WKRN Radio in Nashville, called, ‘Female Viagra saves local woman’s marriage’. Parrish, not surprisingly, also attended the October 2014 patient-focused meeting, where she spoke emotionally: ‘I want to want it all the time …. I want to always desire my husband and I don’t want it to be situational’ .

The statement, “I want to want it all the time, not wanting sex to be situational” demonstrates clearly how the agency of women in heterosexual sex is subordinated to the appetites of their male partners and crushing social expectations. Amanda is advocating for a cure that has seemingly worked for her, but one that research backs up may not work for others.

[2] Even the Score - Women's Groups Launch Campaign to 'Even the Score' on FDA-Approved Treatments for Women's Sexual Dysfunction, Provide Voice for the 1-in-10 Women who Experience HSDD

Throughout this piece about women’s sex lives, there is a dramatic focus on the husband’s wants - making him feel good or saving the marriage. Even the Score is telling its audience that a medication that ‘fixes’ a woman to want sex will save the country. Persuading us, like with male Viagra, to take a pill rather than to explore and restructure our relationships.

Part of my interest in sex and disability is the need for exploration, to have enjoyable intimacy of any level there needs to be a conversation had. For disabled individuals as much as any other individual, a conversation on pleasures, wants, and worries, benefits all parties involved. Perhaps drugs like Addyi may be a useful part of that solution, akin to a sex toy, but it is not the miracle cure it purports to be.

As a treatment, I believe Addyi falls short. While choosing to take the medication can be an exercise of one’s own agency and desire, Segal and other opponents of the treatment disagree with the pathologizing of declining libido and the idea that the responsibility to correct it lies purely with women. If a woman is able to find pleasure when in the company of herself, is there really a disorder or disability at play? Or is society framing it that only arousal with a partner is to be valued? In subsequent sections, the paper will explore Representation in Shows and how media is attempting to show a range of sexual fulfillment. Encouraging communication in sexual relationships and demonstrating care for the needs and desires of others is an imperative which may improve the quality of all sexual relationships, and especially those of disabled persons. Perhaps as the media-driven view of sexual pleasure changes, so too will the idea on sex dysfunction. Taking away the engrained responsibility many individuals feel to submit to the will of their partner.