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 Hingsberger’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 Hingsberger 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.

Mar 212014
 

Last weekend I was at Catalyst Con. A lot happened in my heart and mind; now that my body is recovering, I can write about some of it. This might take a few posts.

For now, in no particular order, a collection of snippets, both playful and serious, from my weekend.

  • My weekend started on Friday afternoon with Sex writing 101, a workshop on everything from writing craft to publishing know-how given by Rachel Kramer Bussel. This was a fabulous workshop—three hours of information, encouragement, creativity, companionship and a few laughs. To think I almost didn’t sign up for this! Rachel’s feedback was warm, inspiring, but also clear and targeted,. I felt safe and welcome in this writing space, and even built some confidence to keep working to put my writing and ideas out there.
  • There aren’t words to describe how deeply moved I was by the Living with An STI panel. Adrial of Herpes Life,
    Ashley Manta,
    kate McCombs and Raul Q created a friendly, accepting, and educational space to talk about the stigma around sexually transmitted infections. Among the many important messages shared in this space: STI prevention strategies are important for public and individual health, but never at the expense of anyone’s humanity and dignity. In other words, treat people like people, not like case numbers, not like robots that can be programmed to do exactly what we want them to do. Harm-reduction is meeting people where they are and giving them information that will help keep them safer, based on what their lives actually look like, not on what public health professionals and others in helping fields think their lives should look like. You can read more about the philosophy and practice of harm-reduction here.

    I think it was Adrial who shared this thought: When we talk openly, we can heal the wounds of stigma and feel more connected. kate, Ashley, Raul and Adrial modelled this beautifully and I hope everyone in that room passes that compassion and helpfulness on to others.

  • Seeing Crista of Dildology and her rainbow bustle made me smile. I’m guessing that bustle was a good luck charm, as I actually got to share many hugs and short conversations with Crista; usually we wind up missing each other completely at conferences. it didn’t hurt that my playful femme side perked up in appreciation after it encountered the bustle–rainbows and fluffy things for the win!
  • Del Tashlin’s talk on sacred sexuality reaffirmed for me that our sexual selves aren’t just about what we think and what we experience in our bodies, but include our connectedness with any sexual partners we have and with the world around us. In talking about how we transmit, perceive and talk about energy Del moved beyond the visual—so many introductions to sacred sexuality and connecting energetically with one’s sexual partner stop at eye contact—to encompass a whole range of sensations and perceptions (smell, touch, kinetic awareness, perceived temperature, etc). As someone who can’t see, I was grateful that Del’s introductory talk includes such a broad range of sensory experiences.
    Heightened sexual awareness can also connect us with other types of awareness. Del encouraged all of us to pay attention next time we experience a sexual release, to ask whether there is anything important we need to know, and be open to any answers that come to us.
  • Problem-Solving Sex with Disability inspired me to keep talking about this topic, not to back down or be afraid. Mara Levy is personable, dynamic, compassionate, and a brilliant presenter. I’ll write more about mara’s presentation in another post, but I just had to mention it here as a highlight of my weekend. Mara’s model for problem-solving sex and disability includes figuring out whether an impairment or set of impairments can be fixed, compensated for, or actually featured in the sexual encounter or experience. Plus, I was excited to discover that mara is local to the DC area. There are so few voices talking specifically about sex and disability that it’s marvelous to have another one in this part of the globe.
  • Hanging out at the Tantus display table gave me ample time to catch up with and be inspired by Ducky DooLittle and to handle many of Tantus’s aesthetically pleasing and sexy wares.
  • Last (for now), but very much not least, thinking about everyone who attended my Nuts and Bolts of Acccessibility presentation still fills me with joy. Thank you to everyone who attended for engaging so deeply with the topic, sharing of yourselves and making this early-morning presentation such a positive presenting experience. Thanks also to folks who live tweeted the presentation!
Nov 082013
 

I haven’t been here for a while.

Here’s a little tour of where i have been on the Web.

Fearless press

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 »

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.

Dec 272011
 

Joan Price JoanPrice.com calls herself an “advocate for ageless sexuality”. She is the author of Naked
at Our Age: Talking Out Loud About Senior Sex
(Seal Press, 2011), Better
Than I Ever Expected: Straight Talk About Sex After Sixty
(Seal Press, 2006), and several books about health and fitness, including The
Anytime, Anywhere Exercise Book: 300+ quick and easy exercises you can do whenever you want!
! Joan also speaks professionally about senior sex and about fitness. Visit Joan’s award-winning blog about sex and aging at Naked At Our Age. Joan lives in Sebastopol, California, where she teaches contemporary line dancing – which she calls “the most fun you can have with both feet on the floor.”

How did Joan start writing and speaking about senior sex? For fifteen years, Joan was a widely published health and fitness writer. Then at 57, after decades of single life, she fell deeply in love with artist Robert Rice, who was then 64. Their love affair was profound, joyful, and extremely spicy. Their passion, in contrast to society’s view of older people as sexless, led Joan at age 61 to write Better Than I Ever Expected: Straight Talk about Sex After Sixty (Seal Press, 2006) to celebrate the delights of older-life sexuality.
read more about Joan

You can also watch Joan talk about senior sex here!

I had the opportunity a few months ago to sit in on a phone interview with Joan,and found her one of the most personable, articulate, and delightful people I’ve ever listened to. Her comppassionate but no-nonsense approach to sexuality is refreshing. Joan was kind enough to answer a few questions I had so I can share a little of her wisdom with you. Thank you Joan!

R.M. You’ve done a lot of things in your life, most of them relating to education in one way or another. I’m particularly interested in how your experience as a fitness professional and a sexuality educator interconnect. Do you think they do?

J.P. Yes, on many levels. if we feel like we’re “in” our bodies, feeling the joy of movement and the way our muscles work, we enjoy both sex and exercise more. Physiologically, exercise increases blood flow not only to the muscles and the brain, but also to the genitals, enhancing arousal and sensation. Emotionally, the better we feel about our bodies, the more sensual and sexual we are able to be. And at our age, knowing we’re treating our bodies well will let us enjoy them more, overlooking wrinkles — I hope!
Also physical exercise is great foreplay! Robert and I always made time for walking or dancing as part of our foreplay. By the time we embraced in bed, we were already in sync with each other’s bodies and our own.

R.M. What are the three most important things you’d like seniors to know about their sexuality?
J.P. 1. Our youth-oriented society’s view of seniors who enjoy sex as icky, weird, pathetic, or ludicrous is wrong, wrong, wrong! Our sexuality can be pleasurable and joyful throughout our lives.
2. If something emotional or physical is interfering with your enjoyment of your sexuality, there are solutions available! That’s why I wrote Naked at Our Age: Talking Out Loud about Senior Sex, because so many of us just accept our changes as inevitable, unchangeable, and too embarrassing to seek help for – and don’t know that solutions exist that can totally change our experience.
3. We as seniors need to talk out loud about our sexuality. That’s the way we can change both society’s view and enrich our own enjoyment by seeking information, learning what’s possible, and sharing that knowledge.

R.M. I notice that you use the terms “senior sex” and “ageless sexuality”. What would you particularly like younger people to know about sex and aging.

J.P. I know it’s part of youth to believe you’ll never be old, never be wrinkly or arthritic or have saggy skin, never fall out of love or lose a partner to cancer – but this all happens! The best “sex insurance” that a young person can have for a sexually gratifying older life is to learn about the changes, listen to elders about their experiences, and embrace older people who are willing to share with you. It’s a sign of deep maturity to welcome a dialogue with elders, and emotionally enriching, too.

R.M. …and if you could say a few words about what is coming up next for you, what your current projects are, that would be terrific!

J.P. Woo hoo! I’m very excited about my new project, editing an anthology of senior erotica! This will be a collection of stories and memoir essays by writers over fifty, featuring steamy characters over fifty. Think about it – why is erotica almost always about young, hot bodies? Is there an upper age limit to being sexy, wanting sex, caring about sex? I say no. Please see my Call for Submissions.

May 102011
 

Sex talk and comedy have a longterm, permanent relationship.

WE have all heard the jokes about sex. I don’t need to repeat them here. Some of them are genuinely funny. Most of the ones I’ve heard are degrading, derogatory to women, and often based on misinformation. If someone were basing their entire sex education on the jokes told and the “funny” things people say, they’d have a pretty skewed perception of how to have safe, happy sex.

Enter educators like Maria Falzone.

Maria Falzone has been a comedian for years. About fifteen years ago she was encouraged to bring her razor-sharp wit and impeccable sense of timing to the world of sex education. She presents her “Sex Rules” show, filled with her personal experience and spot-on advice, to students at colleges and universities and to the rest of us at community events and comedy clubs.

I’ve seen Maria present twice now, once at Momentum and once at a local comedy club, and would see her again in a heartbeat. She’s smart and funny, and speaks my language—sexual empowerment and release of sexual shame for all.

The Momentum Conference was like school for me (only more fun than any school I’ve ever been to) and I took copious notes. Here’s what I said after hearing Maria speak: “I laughed until I cried, and I adore her. Such a fabulous message. I’m feeling giddy to be in such a sex-positive space. The most beautiful moment: watching this entire roomful of people burst into applause and cheers as Maria tells us that we need to educate our young people about sex.”

The show at the Comedy club was just as fun and inspiring. My friends and I sat in the front row of a room packed full of women—this show was women-only, but not all of her shows are. (I definitely suggest going to Maria’s shows with friends so you can share the laughter and joy.) Maria soonhad us laughing, first a little nervously, then gustily,when she told us that she says clitoris (emphasis on the second syllable) because it makes it sound so much more powerful and bad-ass. Though usually shy of speaking in such a situation, the toy maven in me just had to speak up when Maria shared with the audience that she loves vibrators and owns five of them. “Did you say you have five vibrators,” I asked, a little timidly, fearing to upstage her.

“Well, yes. How many do you have?”

“Oh…I (soft laugh) I couldn’t even begin to count.”

“I love you,” was her sincere response, and my evening was made.

I want to regale you with Maria stories. I want to share her hilarious tales about her Italian-born parents (her mother’s warnings about what would happen if Maria had sex, and the time Maria’s father found her vibrator still make me chuckle), or the funny-but-sad tale of her first sexual experience, or the inspiring things that have happened in her lectures to college students, or her sassy, women-positive one-liners. Maria’s speaking has a panache, though, that this blog doesn’t have, and I really want you to see the show if you can, so I won’t spill all her secrets.

Instead of spilling all, I’ll leave you with a few gems:

  • The only reason to have sex is because you want to and because you like it. When you can have sex with the sheets off and the lights on, you can have shame-free sex. (Though I’ll add that turning the lights off or keeping the blankets up can add unique fun and challenge for established lovers.)
  • We empower our young people by teaching them about sex. Children are never too young for us to start teaching them empowerment over their bodies. By not teaching them, we give the power to sexual predators, who capitalize on children’s shame and lack of knowledge.
  • We have so much shame around sex in our society.
    Straight people get the message that sex is wrong, bad, shameful.
    Queer people get the message that they are wrong, bad, shameful.
    No one is wrong, bad, or shameful for any consensual choices they make about sex.