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Mar 302012
 

Tomorrow morning Dr. Ruthie Neustifter and I will be presenting our workshop “ready, sexy, able” at the Momentum conference.

Our aim with this workshop is to inform, of course, but it is also to jumpstart the dialogue on sexuality and disability. With knowledge comes power. With discussion comes truth, and freedom from shame. Our North American mainstream media teaches us that sex is a luxury, a reward for being young enough, fit enough, “attractive” enough, wealthy enough. Our lived reality is one of many different bodies and many different life experiences.

WE’ve gathered together this list of definitions and resources.

This list is not complete.

Follow the instructions in the document and add your own knowledge.

Or email me at
robin@robinstoynest.com

Having trouble viewing the document? It’s a little persnickety for screen readers.

Clik here for a straight HTML version and email me at the address above if you have any suggestions.

Oct 302011
 

The following is a brief literature review I wrote recently, looking at the sex education needs of adults with physical disabilities.

The field of sexuality and disability is gaining in popularity among researchers and service providers, but there is still relatively little published material. Gaining a picture of the overall field requires looking at writing and research performed over the last decade and drawing inferences between these writings. Many studies, for example,address only one population of people with disabilities, such as those with spinal cord injuries (see, for example, Sakellariou, 2006). Many studies, whether researching a specific population or examining a specific issue, have been conducted on small scales. To gain an appreciation for the multi-faceted issues in this field, it is helpful to see sexuality as something that everyone, regardless of ability, is concerned with

One thing that becomes clear is that people with disabilities, both congenital and acquired, do have an interest in sexuality, are sexual beings, and want more information from their medical and rehabilitation support teams. In a study of young men and women with cerebral palsy, ninety percent of the participants reported that their rehabilitation did not include information on sexuality; most of these participants expressed a desire for this information (Wiegerink, Roebroeck, Bender, Stam, & Cohen-Kettenis 2011). In The Ultimate Guide to Sex and Disability, Kaufman et al offer firsthand accounts from peple with various disabilities on the unwillingness of doctors and other medical support staff to provide information about, or answer questions concerning, sexuality (2007).

Revealed is a broad resistance to including sexual information in medical and rehabilitation treatments. It has been suggested that this arises from practitioners’ personal discomfort with discussing sexuality, and a lack of training in ways to discuss these topics with patients or clients (Akinci, Yildiz & Zengin 2011). The literature onA study of rehabilitation providers for survivors of spinal cord injuries shows the necessity of professional training in addressing patients’ sexual concerns, and the proposed need for this training to be discipline specific (Fronek, Kendall, Booth, Eugarde & Geraghty 2011). This material shows the clear need for sexuality to be included in the training of medical, rehabilitation, and other health care professionals, but the rigours of research only allow a limited amount of generalization in this matter.
As important as it is to encourage discussion of sexuality between health care providers and people with mobility disabilities, it’s also crucial to avoid the trap of viewing sexuality as a medical issue. Wiegerink et al measured their participants’ physical and emotional sexual concerns, while mostly avoiding a broader picture of sexuality (2011). A limited amount of work has been done calling into question the medicalized perspective of sexuality as a collection of physical responses. A study of men with spinal injuries, for example, found that the major impediments to sexual activity and sexual satisfaction were the prejudices of others and the difficulty of getting the needed assistance to make sexual activities possible and accessible (Sakellariou 2006). This brings forth the main motivation for people to be sexual—the pursuit of pleasure and intimacy. The primary dialogues on sexuality and people with disabilities encompass reproductive issues, assumption of asexuality, abuse and victimization, and medical concerns about bodily functioning. What is missing is a “discourse of pleasure” (Tepper 2000). Tepper’s research is also with people who have spinal cord injuries, and what emerges, from a population that, for the most part, has been disabled in adulthood, is a strong desire to redefine and experience sexual intimacy and pleasure and to break down the socially and medically constructed barriers that prevent them from doing so. Additionally, promoting sexual pleasure for people with disabilities ties into promoting sexual self-esteem. IN a study of women with physical impairments, Hassouneh-Phillips and Mcneff draw connections between reported low sexual self-esteem among women with physical disabilities and the documented high probability of their experiencing intimate partner violence(2005).
As referenced above, The Ultimate Guide to Sex and Disability highlighted the voices of people with disabilities and brings together all these aspects of sexual practices, feelings of self-worth, experiencing feelings of self-worth, pleasure, and interactions with medical,, personal care, and rehabilitation personnel (Kaufman, Silverberg & Odette 2007). Though written primarily for people with disabilities and those who love them, the Ultimate Guide To Sex And Disability is considered a timeless and seminal book for educators and health care professionals. What is needed is more awareness of the ways educators can bridge the gap and offer supportive, educational material to people with mobility disabilities.

References Cited

Akinci, A. C., Yildiz, H., & Zengin, N. (2011). The Level of Comfort Among Nursing Students During
Sexual Counseling to Patients Who Have Chronic Medical Conditions. Sexuality And Disability, 19. 11-20

Crawford, D, & Ostrove, J. M. (2003) Representations of Disability and the Interpersonal Relationships of Women with Disabilities. Women and Therapy, 26:3. 179-194.

Fronek, P., Kendall, M., Booth, Susan, Eugarde, E. & Geraghty, T. (2011). A Longitudinal Study of Sexuality Training for the Interdisciplinary Rehabilitation Team. Sexuality and Disability, 29. 87—100
Hassouneh-Phillips, D. & McNeff, E. (2005). “I Thought I was Less Worthy”: Low Sexual and Body Esteem and Increased Vulnerability to Intimate Partner Abuse in Women with Physical Disabilities. Sexuality and Disability, 23:4. 227
Kaufman, M., Silverberg, C., & Odette, F. (2007). THE ULTIMATE GUIDE TO SEX AND DISABILITY For All of Us Who Live
With Disabilities, Chronic Pain, and Illness. San Fransisco, CA. Cleis Press.

Sakellariou, D. (2006). If not the Disability, then what? Barriers to Reclaiming Sexuality Following Spinal Cord Injury. Sexuality and Disability, 24. 101–111

Tepper, M. (2000). Sexuality and Disability: The Missing Discourse of Pleasure. Sexuality and Disability, 18:4. 283-290

Wiegerink, D., Roebroeck, M., Bender, J., Stam, H., & Cohen-Kettenis, P. (2011). Sexuality of Young Adults with Cerebral Palsy: Experienced Limitations and Needs. Sexuality and Disability, 29:2. 119-128

Wilson, A. S. (2011). Meaningful Sex Education Programs for Individuals with Intellectual/Developmental Disabilities Sexuality & Disability, 29. 113-118

Jul 052011
 

The other day a few folks started chatting on twitter about sex and disability. A friend commented that he’d really like to learn more about the subject, as he doesn’t know much and would like to know more about accommodating those with disabilities. Since the topic was sex, I responded that I hoped it would be less about accommodation and more about enjoyment. He agreed, but feared his lack of knowledge could lead him to injure potential partners.
The topic, or rather topics, of sex and disability, are numerous and wide-ranging. I’ll be coming back to them many times in this blog. Apropos of the conversation I mention here I have two observations. I think that when people think of disability, especially as it might relate to sexual concerns, they think of mobility impairments. That is, disabilities that limit or prevent movement in some or all areas of the body. Disability actually encompasses a wide range of physical, sensory, cognitive, developmental, psychological, or medical concerns.

The second observation? A lot of the concerns people have regarding the subject of “sex and disability” are concerns that apply to the individuality of bodies and experiences, whether they’re considered “able” or not.

Yes, there are differences. A blind man can’t glance across the room and entice you with eye contact. A woman who uses a wheelchair to get around may, depending on the nature of her disability, need help in and out of the chair, with changing positions, and so on. A deaf person will likely want you to leave the lights on so he can read your lips, watch your body language, or do whatever he needs to do to communicate with you while you’re being sexual. For those who can see, It’s more fun with the lights on, anyway. It can get even more complicated when someone has multiple disabilities, or when both partners have disabilities.

The basic answers, though, are simple. Responding to my friend who was concerned about injuring someone from ignorance and ensuring he could provide as much pleasure as possible, I answered that it’s exactly the same as with a supposedly able-bodied partner; safe, healthy, pleasurable sex starts with partners talking to each other, asking what is needed, what is wanted, what is desired.

I have heard people with mobility impairments say that the necessity of giving their partners specific instructions on how to move them makes the whole encounter so much sexier. Talking is always sexy.

What if your partner can’t talk? Very likely they will have a communication system set up, and it’s something you’ll know about ahead of time.

The fun, and fear, of sexy time with a new partner is the same regardless of ability. The challenges arise when we’re faced with things we’ve never encountered, and sometimes have never heard of. Don’t let fear keep you from what, or who, you want. Listen, ask questions, connect!

There’s so much more I could say, but I will leave it there for the present. I’ll leave you with a few resources.

One of the best resources for info on sex and disability is the fabulous book
The Ultimate Guide to Sex and Disability.
(Also available in alternative formats from U.S. and Canadian service providers. Please ask me for details.)

Here’s a list of sex and disability resources. The creator of sexuality.about.com is Cory Silverberg, coauthor of The Ultimate Guide to Sex And Disability.

What are your thoughts as you read this, or peruse the resources, or reflect on your own experiences? What do you think the challenges might be if you were sexual with someone whose abilities were different from yours? What would you like to see me write about in this arena?