Confrences & Scholarship
The Informational Body: A Sociomedical Theory of Disability and the Ethics of the Brain-Machine Interface
Cybernetic and bionic technologies hold emancipatory potential for people with disabilities. Yet, scientists and disability scholars are polarized in their views on developing biotechnologies. Different discourses converge upon the brain machine interface—a link between the central nervous system and an external device—that augments sensory information and mobility. This study combines philosophical, cultural studies, and social sciences methods to examine perceptions of these technologies held by people with physical, mobility disabilities and those of the researchers who develop them. Participants with acquired disabilities were more open to brain-machine technologies than those with congenital disabilities; scientists focused on patient “quality of life” and the ethics surrounding biotechnologies. My “sociomedical” theory of disability reconciles opposed medical and social models through an “informational body heuristic” that delineates the disabled body as a functionally-impaired cybernetic system. Ideological reconciliation would facilitate access to biotechnologies, thus improving the quality of life for people with disabilities.
Link to PDF HERE
Experiences of Dating and Sexuality among Heterosexual Females with Congenital Mobility Disabilities: An Updated Literature Review
This updated literature review lays the groundwork for the follow-up in a longitudinal study exploring the experiences and perceptions of heterosexual women with disabilities in dating and romantic relationships. My initial study (2006) provided in-depth analysis of five qualitative interviews with young women with neuromuscular disorders exploring retrospective dating experiences in high school. Findings overwhelmingly supported the notion that healthy socio-sexual development was largely a function of self-esteem in adolescence, as impacted by educational environment (in terms of integration versus segregation and peer attitudinal variables), and perceived parental support. This updated literature review will survey prior areas of interest to evaluate sociological change over the past 10 years: academic integration, attitudes towards people with disabilities (especially women), physical barriers to social spaces, and the subjective impact of disability on dating and life goals. I will include personal passages in self-reflective exploration of my own relationship to dating and sexuality as a woman with a congenital, physical disability, and introduce new findings on cultural trend of sexual and romantic expression among women with disabilities. This research forms the basis of re-inquiry into my former subjects’ self-reported satisfaction with, and experience of, their romantic and sexual lives since my last study.
The Ethical Integration of Brain Machine Interfaces : Toward the Cyborgization of the Disabled
link to PDF : HERE
Re-envisioning the “Sex Goddess”: Intimate Internal Landscapes of a Crip Woman
Women with physical disabilities are seldom depicted in mainstream art, and are even more rarely the authors of their own experiences and representations.
The overall aim of this presentation is to share the complexity of layers through which I, as the artist and subject, emerge as a sexual being worthy of intimacy, a love and “worship” through the eye of the lens, expressed as subject and author of my own lived experience as a woman with a disability. This artist panel will confront biases about sexual representations in art—specifically representations of women with physical disabilities, as participants are invited into an intimate space of uncensored self-reflection. The piece invites an exploration of my surrender and freedom to the experience, to my lover, and to my own fears and desires while simultaneously allowing spectators to surrender to their curiosity, questions, anxieties and voyeuristic desires.
This piece will portray a raw, unmitigated, intimate self-portrait as a disabled woman and sexual being as I express that sexuality and multiple layers of my own identity with an able-bodied male partner. This curated photographic installation uses light, images and pre-recorded audio narration to position me, as subject and artist, in full acceptance and creative force behind the moment captured. My sexuality is mirrored in this photographic narrative and is deconstructed as an emotional, lived experience, complicated through mixed-ability intimacy, and the processes of voyeuristic pleasure. The piece will utilize documentary and classical photography in order to explore the themes of: sex-positivity, disability, inter-representation, self-representation, and voyeuristic pleasure of disabled sexuality.
The Hours Before “Goodbye”
This intensely personal essay explicitly interrogates the experiences of love, romantic loss, sexuality, and societal constructedness of femininity, as they intersect with the lived reality of physical disability. Told as a first-person narration of a woman with a neuromuscular disorder, in the hours before she says “goodbye” to the only man who she felt ever loved her.
The author draws distinctions be sex and love, and asks questions surrounding what impact the experience and expression of romantic love can have on the overall health of women with disabilities. As the status of health is forever tumultuous, changing, and subjective, so to are the conditions surrounding the formations, maintenance, and disengagement of our romantic entanglements. The author illustrates these formations and points to a lack of recognition within feminist bioethics and health fields in addressing these issues, along with the need for a deeper analysis of the negotiating and competing factors that impede women with congenital disabilities from attaining—even striving for—that harmonious union of sex and love. .
"After Goodbye”: A Film Essay Deconstructing Romantic Loss from the Perspective of a Woman with a Physical Disability
"After Goodbye" is a curated short film, following my experiences of the loss of a romantic relationship and emergent search for meaning, from my unique perspective as a woman with a physical disability. Borrowing from Brechtian traditions of self-reflection and the stylistic language of a film essay, the film illustrates a more "nuanced reality" (Devlin & Poither, 2005) of disability within a dynamic socio-political and cultural context that is ever changing in its production and reproduction of the self and society (Titchkosky, 2003). The film and its accompanying essay serve as both, an experiment in self-healing through art therapy and as a phenomenological study. The central visual theme of going for “walks” in the film, while filming with a shaky camera, and the inclusion of self-reflexive visual and dialogue, construct a realism and authenticity that emphasize a fluctuation of emotion, health, and self-construction or negotiation with the unaccommodating “outside” world, that individuals with disabilities face daily as they strive to “pass” as able-bodied and as “normal” in appearance and functioning as possible (Kim, 2011; Stone, 1995; Nemeth, 2000). In this manner, this filmic essay directs attention to a cultural “regimen of dis-citizenship” (Devlin & Poithier, 2005), whereby their individual and unique experiences are fixed within a universal professional preoccupation with helping them cope with, and overcome, their “personal tragedy” of disability (Morris, 2013; Barnes, Mercer and Shakespeare, 1999). This artistic interrogation of romantic loss from the perspective of a woman with a disability thus challenges the viewer to shift their focus away from what people with disabilities “do” and “how they act”, toward a reflection upon an “inner world" ensconced in socio-cultural process that disable us and robs us of our full potential to live free of stereotypes, and inaccurate, emotionally damaging representations.
Thinking Beyond Barriers: Supporting Volunteers with Physical and Mobility Disabilities
This dynamic, solutions-focused session will explore opportunities for supporting volunteers with physical and mobility disabilities. Stella Palikarova will draw from lived experience to provide an understanding of physical and attitudinal barriers, as well as economic and support(s) related factors that impact volunteers with disabilities. This session will provide plenty of food-for-thought for volunteer engagement professionals who want to transform barriers into opportunities.