This was originally written and published in late August, 2014 after I attended Jessica Naslund’s workshop, Healthy Relationships and Sexuality: A Systemic Approach to Supporting People with Cognitive Disabilities, at The Woodhull Sexual Freedom Summit.

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 Naslund 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 a social worker, Jessica works with, as she puts it, a population no one wants to talk about—intellectually and developmentally disabled people—around an issue no one wants to talk about—sexuality.

Jessica started by asking workshop participants what words and phrases come to mind when we think about sex and sexuality. We then shared words describing thoughts and feelings around sex and sexuality and people with intellectual disabilities. The two lists didn’t look at all alike. The first one included a variety of feelings and experiences, most of them positive; the second, full of limits and lack of possibilities, was positively dreary!

We should not be ignoring the lives of people with intellectual disabilities, or the reality that sex and sexuality can be, and usually are, just as much a part of these folks’ lives as they are for anyone else.

It shouldn’t have to be said, but…

People with developmental or intellectual disabilities do have sexualities – sexual feelings, experiences, desires, vulnerabilities. people with developmental or intellectual disabilities are also 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’s work focuses on teaching people with developmental or intellectual disabilities 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 people 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 that privacy is being invaded. 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. Jessica shared a story of one person who was considered such a threat to himself and others that he was never, ever allowed to be alone. His behavior changed markedly when he was given the chance to be alone in a familiar room for fifteen minutes at a time.

People with developmental or intellectual disabilities are often in very regimented treatment and care systems (with tight schedules and strict rules) where they aren’t given privacy, even to just be alone in a room listening to music or watching TV for a while, and where they 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 the staff member thinks needs to be done, such as taking a shower or finishing a snack.

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 listened to or respected before.

It’s important that intellectually disabled people be given the opportunity to make choices. Even when something needs to happen or the person with an intellectual disability isn’t 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 people with intellectual disabilities don’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. Even when boundaries – such as good touch/bad touch – are taught, time isn’t usually taken to teach about emotions in a way folks with different intellectual disabilities can understand. For example, educators can teach not only “don’t hit” but “this is what someone looks like when they’re uncomfortable, or scared, or have just been hit and don’t like it at all.”

Many people with intellectual or developmental disabilities need new concepts 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 when they learn about bodies and relationships, they need their educators to 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, they don’t know how to convey amorous feelings without overwhelming the person they have those feelings for (E.G. Learning how many voice mails it’s acceptable to leave for a girlfriend or crush object). But, using the right learning tools for each individual, folks can learn what cues from other people mean – how to use the skills they have to judge if what they’re doing is okay.

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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.

Jessica advocates using multiple systems approaches- for example, 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.

She offered this example of what this collaboration reveals: 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 for “sessions” 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 and sense of confidence (both personal, and in the care they’re providing) away.

Another part of this 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 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 the syndrome. 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 information I hadn’t known —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. Her support staff 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 to the point of irritation. 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… It could be for any number of emotional or physical reasons.

So, my first step towards a solution was to have this young woman visit a doctor. But no, there should be a step before that, a step that could help us narrow down the possibilities – a step 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 questioning 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 noncomply and leave those pesky peas on their plate – 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.