Warning: Declaration of Suffusion_MM_Walker::start_el(&$output, $item, $depth, $args) should be compatible with Walker_Nav_Menu::start_el(&$output, $item, $depth = 0, $args = Array, $id = 0) in /data/22/2/51/136/2051788/user/2247910/htdocs/Toys/wp-content/themes/suffusion/library/suffusion-walkers.php on line 0
Sep 072014
 

I promised in this post to give you a rite-up of Mara Levy’s workshop at Catalyst Con and I never did. I’m excited by the variety of new voices talking about sexuality and disability, and the unique perspectives and experiences they’re all bringing to the table, so want to share those with you whenever I can.

Mara is an Occupational Therapist (OT) in Washington DC. Occupational therapists help people who’ve experienced injury or illness to return to activities that are meaningful to them—activities like walking, driving, working, crafting, and the like. Mara includes sexual expression and sex in her definition of meaningful activities. This may be a “well duh!” idea to many readers here, but for people who are disabled, sex is generally considered unimportant, or even irrelevant. Add to that that many medical and rehabilitation providers don’t address sexual issues, concerns, or changes with their clients, and you can have people really not sure where to go with meeting the sex and sexuality needs that don’t go away with physical or cognitive limitations.

There are a lot of negative, or just plain silly, responses to disabled people and sexuality.

Here’s what Mara says nondisabled people need to do about that: They need to listen, rid themselves of paternalistic attitudes, avoid jumping in to help or change something unless they are asked to, remember what is and isn’t their business (hint from me: If you wouldn’t ask an apparently nondisabled person on the street about their sex life, don’t ask a disabled person), respect boundaries—all on their own time. A disabled person’s sexuality is no one’s business unless they ask you for help working on sexual issues, or unless they want to have sex with you (and you want to have sex with them).

People also need to question the all-too-common assumption that a visibly nondisabled person seen with a visibly disabled person must be the caregiver or helper. This gets old—really fast—especially if the people in question are actually lovers.

Speaking of partners, Mara made what I thought was a really important point about consent. It’s not just the person with disability who needs to consent, but their partner. For some disabled folks, most physical activities have some level of pain or discomfort attached to them. A partner may not be able to consent to something they know hurts their partner, no matter how much they’re told that it’s okay, and that this sexual activity is wanted. For people with chronic or episodic (occasional, brought on by specific factors like weather, certain activities, etc) pain, this may well be part of the sexual negotiation.

Because people are often sent the message that talking about sex and sexuality isn’t okay—and this is doubly true for people with disabilities—Mara emphasizes that it’s important for medical and rehabilitation providers to give their clients or patients explicit permission to talk about sex and sexuality. Even if that’s not their area of interest or specialty, even if they don’t have all the answers (people who do specialize in sex and sexuality rarely have all the answers), just listening can be powerful, and starting the problem-solving process can lead to patients and clients getting what they need and want from their sexual lives.

There are a lot of barriers to people with disabilities experiencing their sexualities, such as:

  • Physical and psychological pain or discomfort.
  • Societal attitudes about what “real” sex is, about who is sexy and attractive, even about who is allowed to live. (Hint from me: Disabled people are often told, by strangers and friends alike, that a nondisabled person would “just die” if they had such-and-such a disability.)
  • Paternalistic or inspirational attitudes. It’s a strange either-or in which people with disabilities are either seen as childlike—in need of help or guidance—or are seen as amazing, imbued with super powers. Sometimes, disabled people are subjects of inspiration porn, which isn’t at all sexy!

Mara proposes using the same model she uses to work with clients around their activities of daily living—I just had to throw some rehab speak in there—to helping people solve sexual problems or simply to reach their sexual goals.

This model has us looking at the person, at the environment, and at the situation. For each one, we figure out what needs to and can be fixed, what can be compensated for, and even what may traditionally be seen as a problem but which can actually be an asset.

What does the person bring? Not just their disability, but their hopes, their desires, their beliefs about sex (and what they know about sex). The environment may or may not be accessible to this particular person. What’s the situation? What’s the person trying to do? Does the available environment make the situation possible? (If the person wants to have intercourse with someone, but needs (maybe for pain or mobility reasons) to be able to lie down on a firm surface, and the only room that’s available has a fluffy feather bed, the needs of the person, the requirements of the situation, and the reality of the environment, aren’t going to go together.

That’s just a simple example of course. The kinds of questions that will be asked, and the kinds of fixing, compensating, or adapting that will be done will depend on the activity—and when it comes to sex and sexual expression, the activity list is endless. So here’s just a sampling of the kinds of questions one might ask:

Person

  • What are the physical issues (E.G. pain, reduced sensation, mobility impairment)?
  • What are the psychological issues (E.G. anxiety, stress, grief around acquired disability)
  • What values and knowledge does the person have around sex?
  • Does the person have a solid understanding of their medical condition? Is the prognosis and treatment known? Are there limitations on sex recommended by healthcare providers? If medication interferes with sexual functioning in a way that doesn’t work for the person, can that be changed?

Environment

  • Is the place where the person wants to express their sexuality accessible (E.G. dance club, bedroom)?
  • If the person needs a caregiver to help with some tasks before, during, or after the time of sexual expression, is there someone close by who can give nonjudgmental assistance?
  • Cultural environment: What attitudes are held about sex and disability, both separately and together? Are they negative or limiting? Has the person internalized them? Are they having to spend time and energy resisting spoken and unspoken messages they’re getting about their disability, their sexuality, or both?

Activity

  • What’s the activity in question? What movement or amount of physical and emotional energy is required? What props are required?
  • Are there things that would help, such as pillows to support the body or grab bars to help with movement?
  • What are the goals the person has for the activity—orgasm, connecting with their own body, laughing and sharing playful, intimate touch with someone else?

The questions you’ll ask will be very different if you want to go dancing and flirting at a local bar or if you want to find a romantic partner.

It occurs to me that this kind of problem-solving process can be applied to anyone’s life, whether you have a disability or not.

It seems to me particularly useful though in breaking down barriers that say that sexual expression for someone who has disabilities is just too complicated to warrant attention.

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!