Oct 232014
 

Last month, the American Academy of pediatrics updated its guidelines on providing sexual healthcare for adolescents, though the part of those guidelines validating that teens with disabilities have sexualities too didn’t get a lot of press.

yes, teens with disabilities do have sexual feelings, are interested in sex, and (mock gasp!) engage in sexual activity with themselves and other people.

It was strictly against the rules, of course, but I happen to know that the school for the blind I went to was teeming with horny teens acting on their horniness!

I wasn’t one of them, but I did hungrily, and a little guiltily, devour the three sex and sexuality books the school library had in Braille.

So, this week I’m sharing a piece from the depths of the Internet, written by a disabled teen, about her sexuality.

Cara Liebowitz is a powerful activist for disability rights.

She gave this interview on disability and sexuality four years ago when she was in her late teens.

Enjoy.

Aug 232014
 

There are, for me, anyway, few good reasons to get up early and leave the house on a Saturday morning, but Jessica Naslund’s workshop, Healthy Relationships and Sexuality: A Systemic Approach to Supporting People with Cognitive Disabilities, at The Woodhull Sexual Freedom Summit was definitely one of them. I learned so much in this workshop. Even now, a week later, reviewing my notes and preparing this post, I’m bubbling over with enthusiasm. I’ll share some of what I learned, and thoughts that came up around it.

Here’s the workshop description:

As practitioners and educators we are guiding individuals through their unique sexual journeys. People with cognitive disabilities have a challenging journey ahead of them because of barriers to education that are perpetuated by myths about how these individuals relate in society. It is our job as advocates to understand the barriers and work to push through them so that everyone has access to the same pertinent information and resources. People with cognitive disabilities require more multi-dimensional approaches to capture and retain comprehensive sexuality education material. These approaches may include visual or auditory media, hands on activities, developing a support system for the individual, and a more team approach to teaching with caregivers and support providers.

Words can’t quite describe how awesome this workshop was.

Jessica is brilliant—enthusiastic, passionate, and best of all she doesn’t just talk the talk, but walks the walk every single day of her working life. As she puts it, Jessica works with a population no one wants to talk about—intellectually and developmentally disabled people—around an issue no one wants to talk about—sexuality.

This isn’t a population we can afford to ignore, or an issue we can afford to sweep under the rug. First of all, people with developmental or intellectual disabilities do have sexualities; everyone does. Secondly, people with developmental or intellectual disabilities are at alarmingly increased risk (relative to the general population) of experiencing many kinds of abuse, including sexual abuse. This is, to put it mildly, not okay.

Jessica emphasized that people with developmental or intellectual disabilities need to be taught the positive as well as risky parts of sexuality. For example, a person can and should be taught about dating and sexual harassment, or happy feelings and bad feelings when someone touches them and they don’t want that touch. It’s really hard, if not impossible, for someone to know something is bad, if they don’t also learn about the good things, and that it’s okay to have those feel-good feelings in their bodies when they touch themselves or when they think about someone they have a crush on.

Dave Hingsburger’s Ring of Safety takes this sexuality-affirming and humanity-affirming approach to preventing abuse. I had a momentary “squee!” moment when Jessica mentioned Dave’s work, as reading his article A Witness to Courage was pivotal in catalyzing my commitment to giving a voice to disabled people and our sexualities.

The Ring of Safety incorporates several components, including individualized sex and relationship education, awareness of privacy, and the ability to non-comply—to say no. People often don’t know how to teach people with intellectual or developmental disabilities about sex and relationships, or don’t think it’s important to do so. But, if someone doesn’t know what their body parts are called, how can they convey whether those parts are feeling good or bad. If someone doesn’t know what privacy is, or what it feels like, they can’t tell if someone is invading that privacy. Things many of us take for granted, such as getting to spend time alone, or being able to use the toilet and shower by ourselves, are luxuries virtually unknown to many.

People with developmental or intellectual disabilities are often in very regimented treatment and care systems where they aren’t given privacy, even to just be alone in a roomlistening to music or watching TV for a while, and aren’t allowed to say “no!” even to simple things. Too often staff in these environments are rushed or overworked, and don’t feel like they have the time for the negotiation process of someone saying “no” to something.

Jessica quoted Hingsburger as saying: “If you can’t say no to peas, you can’t say no to penis.” When someone indicates they don’t want to eat peas, no matter what their disabilities are, that needs to be respected. We can’t expect someone to be able to protect themselves from being hurt, or tell a trusted person that they were hurt, if their preferences around what they do, and what happens to their bodies, have never been respected before.

It’s so important that intellectually disabled people be given the opportunity to make choices. Even when things have to be done, or they’re not able to indicate what their choice is, talking to them, asking permission before something is done (for example: “Can I dress you now? Instead of “Okay, time to dress you.”) goes a long way towards restoring someone’s humanity, and, ultimately, helping to keep them safe.

If someone doesn’t know what healthy is, they won’t know what unhealthy is. This includes both speaking up if they’re being abused, and learning how to not be abusive. The incidence of abuse among developmentally and intellectually disabled people isn’t just from caregivers, but from intellectually and developmentally disabled people themselves. Very often, this is rooted in people not understanding boundaries. Educators can teach not only “don’t hit” but “this is what someone looks like when they’re uncomfortable.”

Many people with intellectual or developmental disabilities need things spelled out really concretely.
This is why it’s important to teach about body parts, about feelings, and about relationships. Many people with developmental disabilities have trouble reading social cues, so talk very specifically about what people are feeling when they look or act a certain way. They don’t know they’re making people uncomfortable, or that they’re about to get in trouble for assault or harassment, or how to convey amorous feelings without overwhelming the person they have those feelings for. But, using the right learning tools for each individual, they can learn.

The reality that’s shown itself over and over again is that when people know what their body parts are, and understand privacy, they start to disclose abuse. Residential and day programs where this kind of education is done have a higher reporting rate, but that doesn’t mean they have a higher incidence rate. It means people have been given some of their power back, and the tools to communicate what’s happening to them or what’s happened to them in the past.

There are a lot of issues here, and I haven’t even touched on the full range of what Jessica discussed. Systems approaches—more than one—are what will help us tackle these issues—help us reduce abuse and restore humanity to many people.

The systems approach isn’t just one system. It includes, among other things, recognizing that there are multiple ways people learn, and hence multiple ways people teach, and also that teaching and supporting people means working with everyone, from healthcare providers, to group home staff, to educators, to families.

For example, people who are not verbal, or who have a limited vocabulary, often express their feelings through their body language and behavior. How frequently or intensely someone stims can indicate how that person is feeling. People who see them every day, support staff and family, are the best people to ask about which behaviours or expressions mean excitement, nervousness, happiness, stress, etc. I particularly like this approach because it validates family members, not the professionals who come in to work with them, as experts. Family members often end up doing the majority of caregiving, and the work of this caregiving, plus the constant interaction with professionals who are often telling them what to do or not do after spending relatively little time with them, can take their power away.

Another part of the systems approach is finding a teaching method that works for each individual. Including using pictures to tell a story or diagram the steps for something, like a visit to the doctor or what it takes to ask someone out and go on a date.

Jessica gave this example. People with Down’s Syndrome aren’t any more affectionate than the general population—which is to say that some might be very affectionate, based on their personality, but it’s not a feature of Down’s. They’re encouraged—taught—to express affection to everyone, probably because people are drawn to their open manner and frequently happy disposition. Hugging everyone isn’t culturally appropriate behaviour, though, and not teaching people boundaries deprives them of knowing when their boundaries have been violated or when they’re crossing someone else’s boundaries. There’s a need to teach all people which forms of interaction are okay In which situations. Jessica says she will often use pictures to diagram different interaction circles—e.g. the mail carrier is in the wave circle (we just wave if we see her), doctor is in the handshake circle, aunt is in the hug circle, etc.

As I write this, I think about how important it is to maintain consistency. A doctor who has known a developmentally disabled patient for a long time, may feel very fond of this patient, and may interact with them in ways they don’t interact with other patients. I think it’s important for them, in this case, to express fondness in other ways, such as through voice, body language, level of interest in their lives, and so on, to reinforce the message that while it’s a friendly relationship, it’s still a doctor-patient relationship.

Relatedly, we need to remember to treat people according to their chronological age, not their presumed mental age. If someone is thirty-three, they should not be treated as if they’re ten. This includes how we talk to them, what activities they’re encouraged to get involved in, and what information (about anything, but especially about sex and relationships) we think they’re supposed to have. I’ve often thought that judging what someone understands, or even how they perceive the world, on their verbal skills is misguided. Jessica agrees, saying that we really can never know exactly how people perceive or understand things because we’re not in their heads.

This presentation taught me a lot of useful facts—as well as gave me new language for things I already knew—but it also made me reevaluate the way I understand people with intellectual and developmental disabilities. Jessica presented several scenarios for us to talk through, both to puzzle out what might be happening and to brainstorm solutions. In working through the following scenario, I discovered a flaw in my thinking: A young woman attending a day program spends a lot of time in the bathroom, to the point where she’d rather be in the bathroom than participating in the activities. People have also noticed redness around her vulva, and that she’s been rubbing her vulva a lot.

We might presume that the redness, and the self-isolating behavior, indicates that she’s being sexually abused. Or, she could be masturbating. Redness could mean that she needs lube, or that she’s not reaching orgasm and is rubbing herself more vigorously to try to get to the ultimate feel-good part—which could be why she’s wanting to hide away in the bathroom. Or, redness could mean an infection, yeast or bacterial, and she’s staying in the bathroom because she doesn’t feel good. Or…I think you get the picture.
So, I thought that the first step should be a visit to the doctor. But no, there should be a step before that, one that will help us figure out whether there is abuse, whether there is an infection, or whether there is something else—and one that will center the young woman, not our beliefs about her. As with any situation, the young woman is the expert on what is going on with her own body; the only thing that differs is the way we access her own expertise. That was the flaw in my thinking, not thinking about whether and how we could get information from the young woman herself.

The operative question here, and one that only she can answer, is “how does your vagina feel? Happy, sad, itchy, mad, etc.” depending on her cognitive needs, the discussion might involve looking at or drawing pictures, or speaking words, or pointing at words, or illustrating with dolls, or any other communication system that works for that individual. Sure, a doctor’s visit is probably in order too, but how much better it would be if that appointment was arranged with the input of the woman herself.

Sometimes, the hardest part to reinforce is that people with developmental disabilities do have sexualities, and those sexualities should be respected.

Even when everything else is in place, the sex ed, the education about privacy, the understanding of a person’s communication style, the permission to non-comply with things– people still don’t have the opportunity to express healthy sexuality. Many group homes still frown on, and even forbid, their residents dating, pursuing relationships, and engaging in sexual activity with others. Sometimes, the response when a resident is found masturbating is anger, rather than withdrawing and giving privacy, or politely and firmly explaining that you need to do that in your room, not in the TV room.”

If we want to recognize people with developmental and intellectual disabilities as human beings, we need to recognize all the things that make them human.

Apr 072012
 

A week ago I was at the Momentum conference. I brought home some fabulous memories, copious notes, some books and a bottle of lube,, and a lot to think about. Processing it all will take a while.

There are many things I want to write about.
Jaclyn Friedman’s talk about the importance of authentic sexual liberation in combatting the harm of sexualization.
Charlie Glickman’s “queer is a verb”, which you can read here.
The connections between sex education and health promotion.
Other gems hiding in my notes.

I did however want to say something about Audacia Ray’s State of the Sexual Union which she presented at the Friday evening opening panel. I would imagine that Audacia felt some trepidation questioning the role of sex positive feminism at a conference that bills itself as being about “sexuality, feminism, and relationships”. I know that her words received notice. My partner Scott, who came to the sessions on Saturday, asked me about the questions being raised about the meaning of sex positive. I hope that Audacia’s contribution was met with inquiry and conversation, not malice and backlash. The other part of Momentum’s subtitle is “making waves”.
We’ll never have much movement if we don’t make waves within our own community. New voices need to speak; old voices need to say new things.

I have been a feminist for many years, but I learned early on in my feminist career, as an undergrad student in Women’s Studies, that the feminist voice, both academic and social justice, excluded part of me. Now, twelve years later at Momentum, mine is finally not the only voice talking about bodily difference related to disability. From a question raised by an audience member in the Opening Keynote panel, to comments throughout the sessions, to positive feedback to “ready, sexy, able” the session I co-presented on sexuality and disability, to another question at the closing keynote, sexuality and ability had a voice at Momentum. That is the first feminist space I’ve been in where I haven’t been the one raising all the questions. It’s also the first space I’ve been in where, as someone with a visible disability, I felt fully and completely equal to other conference participants.

While all of this requires much more exploration and discovery, I thought I’d share some of the Momentum highlights, in no particular order of significance or occurrence.

Continue reading »

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

Oct 202011
 

Last year I learned about the The Mautner Project, The National Lesbian Health Organization based in the Washington DC aarea. Mautner Project promotes health and wellness for same-sex attracted women through educational and support services, and advocacy. Among the many things they Do, Mautner Project conducts:

  • support groups for lesbian, bisexual and transgender individuals coping with cancer and other serious illneesses
  • health education for lesbian, bisexual and transgender individuals
  • training and advocacy with health care professionals on issues and concerns facing lesbian, bisexual and transgender patients or clients
  • Research into the health realities and needs of same-sex attracted women
  • I had the opportunity to attend a workshop workshop at Mautner’s office, and was impressed by the warm friendliness and dedication of the staf.

    Tonight I will be offering a workshop on sexual healing for trauma survivors, as part of Mautner’s new tele-workshop series. I am delighted to be able to offer a little slice of support to Mautner’s clients and supporters.

    The workshop is free to all Mautner Project clients. Mautner requests a $5 donation from all others who listen live or access the recording later. The money goes straight to Mautner and helps them continue the fabulous, and much-needed, work they already do.

    Details:

    Time: October 20 8 PM Eastern

    Description:
    Join Robin as she gives a workshop on having healthy sexual exploration after a sexual assault. Open to both survivors and their partners, as well as health care professionals who work with LGBT-identified survivors of sexual assault, this workshop will give its participants many practical resources as well as gentle encouragement to keep on the journey to sexual fulfillment and ecstasy.

    Call-in Info and paypal Donation link

    If you can’t make the call, a recording will be available either from me or from the Mautner Project beginning next week.

    Please join me in sharing information and supportive energy for sexual healing.

Jul 122011
 

I say this all the time: Lube is really important. I think my friends get tired of hearing me say that. If they voiced their boredom, they might remind me that I call myself a toy maven, and that I should get back to talking about toys, pleasure anatomy, and all that good stuff.

Lube really is the anchor that can pull all that other juicy (pun intended) stuff together, though. It can make sex play easier, more fun, more pleasurable, and safer. It’s important whether you’re playing by yourself, or with others, with or without toys, and with or without safer sex barriers–such as condoms or gloves. Most people–talking mainly about female-bodied folks here–don’t produce enough of their own wetness to make things fun, comfortable, and long-lasting. Speaking of those safer sex barriers, dryness and friction can cause them to split, so using lube with barriers is essential to using them safely.

If you are one of those people who does produce a lot of lubrication and you find your sex play works just fine without it, by all means skip the lube, but please don’t skip it because you think you’re not supposed to need it.

There are dozens–perhaps even hundreds–of different lubricants on the market, and it can be tough to figure out which one you need.

IN this ttele-class I talk about different categories of lube and the pros and cons of each.

IN this class I talked about things to look for in your lube choices, as well as things to watch out for. What have you found in your own quest for the perfect lube? Do you have any shopping or usage tips for others?

Jul 032011
 

Join me for a tele-class on one of my favourite topics–lubricants!

Lubrication is important for safe, comfortable, and, most of all, pleasurable sex. Whether you’re partnered or alone, lubricant will smooth the way to a happier, healthier, and longer-lasting experience.

Somehow, most of us have ended up with the idea, especially regarding female bodies, that our own natural lubrication should be enough. The amount of natural lubrication the vagina secretes varies from person to person, and even from time to time. Keeping a bottle of lubricant on hand ensures that sexy time can happen any time, regardless of wetness.

Male-bodied folks usually learn early in their solo sexual explorations that keeping things slippery makes life a lot easier. This knowledge doesn’t always make it into partnered sex, though.

Want to learn more about lubrication, including why it’s so important and how to find the right lube for you?

Join me on Thursday July 7 at 9 PM (ESt) for a free 30 minute tele-class, and I’ll give you all the basics for celebrating slipperiness.

details Below:

Lube It Up: Pleasure In A Bottle

Thursday July 7 9:00-9:30 PM EST:

In this class you will learn:

  • why additional lubrication is important.
  • where to buy lubricants and how to choose which one is right for you.
  • the differences between silicone, water-based, and oil lubricants.

Open to people of all genders, sexual preferences, and relationship statuses.

To join, dial:

1-712-432-3066
and enter the conference code: 265077

Have questions?

Shoot me an
Email.