Mar 172016

It’s not every day that policy changes around sexual abuse reporting at an agency for people with developmental and intellectual disabilities are covered in that agency’s local newspaper.

What’s not unusual is the amount of stuff there is to unpack around how disabled people’s bodies, sexualities, even our very lives are treated. You can double or triple how true this is when it comes to talking about people with intellectual or developmental disabilities.

This reporting misses just as many issues and questions as it uncovers.

Below, I unpack some of these issues and fill in some of the missing pieces that need to be in this conversation.


Imagine a world where you don’t get to touch or be touched, or where you’re separated if people catch you having sex you want to be having, where the people don’t ask you if you wanted that sex, or intimate touch, or whatever it was you were doing and whatever that touch meant to you until after they made you stop, and then they’re only asking you to see whether they need to take a sexual abuse investigation to the next level.

Even if all of this is happening for a reason – because you or the person you were with has a history of being abusive and the people who take care of your physical needs are tasked with making sure you or they don’t hurt anyone else, or if you or the person you’re with has been abused and the people who take care of your physical needs have been tasked with keeping everyone safe – living this way still isn’t going to feel comfortable or nurturing.


The Story: The Montana developmental Center has updated their sexual abuse investigation policies to meet federal standards. Before the update, all sexual contact between clients was assumed to be nonconsensual, and was treated that way. Clients found engaging sexually with each other were separated immediately and a sexual abuse investigation was set in motion. After the update, sexual contact between clients still isn’t allowed, but if clients are caught having sex, whether or not they consented to that sex will factor into the investigation. If it’s found that a. Everyone involved in the sexual activity agreed to it. and B. Everyone involved was intellectually capable of consenting the investigation wouldn’t go any further.

Yes, it’s commplicated.

It’s even more complicated because the guidance clients get about what is and isn’t appropriate behaviour doesn’t match the policy around what is and isn’t abuse. Clients are told that no touch is allowed between clients. This leads to confusion since clients report nonsexual touching because they’ve been told they’re supposed to. The systems in place don’t require opening an abuse investigation for nonsexual touching.

I can’t help thinking that this confusion over the expectations of clients would make a lot of clients feel unheard, if they go to report something, because they think they’re supposed to, and only then are they told it’s not a big deal.


About touch: I wonder if, instead of restricting and monitoring it, in not allowing touch instead of allowing it under supervision…might this not be interfering with the clients’ abilities to grow and develop new ways for understanding and relating to the world?

Research has shown that touch can be a great vehicle for sharing and understanding emotions – though I don’t agree that these findings support that men are from Mars and women from Venus; there are plenty of other reasons for gender differences in research results.

There’s also research to support that touch is crucial in emotional regulation, something especially important for folks who may have trouble with verbal communication. This reminds me of a story I heard about a woman who worked in a group home for adults with intellectual disabilities. One of her clients had the nasty habit of hitting other people. Somehow, I’m not sure of the details, this staf member figured out that if the client received a backgrub every day, he was much more relaxed and much less likely to hit people.

Sure, this was controlled touch,, in a regulated situation, done for a specific purpose.

I can’t help wondering though if allowing clients to touch (nonsexually) under supervision couldn’t be highly beneficial as well. There seems something so cold and clinical about living somewhere where you’re forbidden to touch at all, instead of being encouraged and taught to touch in healthy ways.

Sometimes, the expectation that a person with an intellectual or developmental disability won’t be safe doing something is more harmful than finding ways for them to do that thing safely. This is especially so for basic needs that so many of us take for granted, such as the ability to spend time alone. One of the stories shared by the social worker who presented this workshop, was about a young man who was deemed so out of control he needed to have two support workers with him at all times. Yet, the intensity of his behaviour revved down once a way was found for him to safely spend fifteen minutes alone every day.


I do wish that this reporting on sexual abuse policies had also included an acknowledgement of the broader issues around the sexualities of people with intellectual or developmental disabilities. People with intellectual disabilities are often thought of and discussed as if their sexualities either don’t exist, or are wildly out of control, and referring to sexual abuse, actively minimizing desires by explaining that no sexual activity is allowed, reinforces this either/or of helplessness or harmfulness.

To be clear, sexual abuse, whether being an abuser or being a victim, doesn’t have anything to do with sexual rights, but whenever we acknowledge that people can or may be being consensually sexual, we need to (or at least I think we need to) recognize that people with intellectual or developmental disabilities are just as likely to have fully formed sexualities of all diferent shapes and expressions as anyone else, and just as likely to find ways of acting on these sexualities as to be the victim or perpetrator of abuse.


This is the point where I stop to share that this piece is dificult to write. The mess of responsibilities, rights, care needs, community resources, feelings, behaviours, institutional histories, power dynamics – it is a stew, and not the tasty kind.

It’s painful to acknowledge that people with developmental disabilities, a population we’ve done so much wrong to as a society, are also capable of doing harm to others, and that, to keep them and others safe, their interactions with others may need to be limited.

Some people with developmental disabilities are sexual abusers. Treating and working with this population is a big part of what the Montana Developmental Center does. Not easy stuff, by any stretch of the imagination.

There are people who are a danger to others. There are people who have trouble understanding personal boundaries, or even with understanding which of their actions will hurt others and which won’t. There are Some people with intellectual or developmental disabilities express really strong feelings through violent behaviour, and don’t understand how their strength affects others.

Some folks, because of developmental delays, never learned, in ways they could understand, how to interact with other people, or how to manage their emotions, the way other children (mostly) do.

People with intellectual or developmmental disabilities are, by and large, not much different, in the grand scheme of things, from the rest of the population – which means that some folks are or will be violent, and will probably have a harder time hiding those violent behaviours than many people who are, or can pass as neurotypical do. Neurotypical folks just (usually) conceal their dangerous behaviours better.


Dave Hingsburger has worked with people with developmental or intellectual disabilities for over four decades now. He’s been an unfailing advocate for the rights of people with developmental disabilities to express their sexualities in all ways that make them happy and keep them, and others, safe. Dave is also very clear that some people with developmental disabilities are violent, and that these violent behaviours need to be managed, and prevented, for the safety of everyone who lives and works with the violent person.

There are precedents for respecting the sexualities of people with intellectual disabilities and actively preventing abuse.

Organizations have developed models for honouring these sexualities while while providing the needed level of “protection from harm, abuse, and exploitation.”


I wish the article about policy changes had also explored what changes are being made to hold everyone accountable when there are cases of staf sexually abusing clients. Staff abuse of clients happens far too frequently in institutions – the Montana Developmental Center will be closing soon, partly because of high rates of abuse.


The people of Boulder Montana, where the Montana developmental Center has been located for over a century, feel angry and betrayed by its closing. The community is furious that a prime source of income and employment is being taken away from them. The people in this town have every right to fear these things, but this article is disappointing for its lack of discussion about why the institution is closing, beyond several interviewees’ firm conviction that the state should have considered the town’s needs in this decision. There’s no mention in the article about the history of deinstitutionalization, its pros and cons, or what community placements for folks with developmental, intellectual,or psychiatric disabilities actually look like.

There’s a lot of material in this article that demands to be ripped apart from a disability rights perspective, but I’ll just highlight three points that I think are especially indicative of general attitudes towards people with intellectual disabilities.

The Rev. Lowell Bartels, who leads the Tuesday services at the nondenominational Good Shepherd Church at MDC, said he fears for the future of those in his congregation.
“We have to keep in mind that these are adult bodies with children’s minds,” he said, fearing where they may end up if they don’t make it in the community setting. “They are going to go to jail.”

No, and no, and an extra dose of no on top! Calling people with intellectual disabilities children in adult bodies is outdated, and wrongheaded, thinking.

Mental age refers to how a person does on standardized tests. That’s it.

Acording to The Arc:

The mental age only refers to the intelligence test score. It does not describe the level and nature of the person’s experience and functioning in aspects of community life.

I’d add that when we evaluate people based only on how well they do on a standardized test, or how they communicate, or even how they relate to the world around them, we forget that there are other senses that we all use to learn about and understand our own experiences and what happens around us, and that just because an adult with an intellectual or developmental disability can’t tell us what’s going on in their minds, or if they can’t communicate memories in ways the rest of us think are logical, doesn’t mean that they don’t retain feelings, sensations, experiences from how ever many years they’ve been on this planet. A thirty-five-year-old is going to have way more of these stored up than will a five-year-old. We need to respect that.

If an adult with a developmental disability chooses activities that are usually more suited to a child, that’s their choice, and has way more to do with what their unique personality and combination of skills and abilities allows them to enjoy, than with them having a “child’s mind.”

We have to stop thinking of and treating adults with developmental disabilities as children

From a nurse who used to work at this institution:

“When I worked there, I loved the people I took care of,” she said.

However, she said, she had her arm broken once and jaw broken twice by clients.

I am so deeply sorry that this nurse went through the physical pain and emotional trauma of being harmed by her patients. That’s a scary fall-out that can happen when people work in healthcare, with any sort of patient or client. I’ve met several former nurses over the years who had to leave direct care after sustaining permanent injuries inflicted by patients. To be sure, the risks might be higher, more concentrated, in a space that works with people who already have a history of violence.

But, try this on for size: IN a place where abuse and mistreatment happens, where the clients have emotional or verbal communication issues, is it really surprising when clients act out violently? If you’ve seen abuse,or know it’s happening,, or have experienced it, and you feel vulnerable, and you don’t feel like you can tell anyone, and you don’t know what to do when you have emotional outbursts (the way most of us do), what else are you going to do but lash out? No, violence is not okay, but the fact that it happens in the course of care should make us look at the bigger issues, and should also not make us assume that people with intellectual disabilities are uncontrolled and a danger to the community.

Placing this nurse’s experiences near the beginning of this article sets us, the readers, up to think that the people living in the town are in in greater danger if the institution closes and its clients are transferred to living in the community. This impression is strengthened by the lack of information given about just what community living for adults with intellectual and developmental disabilities can look like, what kinds of supports they’ll have, how their emotional needs and behavioural histories will be managed, and so on.

A current employee at the institution says:

…the clients “do more in their personal life than I do in mine.”

Ah, but Sir, you have choices, way beyond whether you have chocolate or vanilla pudding for your evening snack,or whether you go to the movie theatre or the bowling alley for group outing. Regardless of how much they need the care they’re receiving at this center, none of the clients chose to live there. That’s a basic personal freedom that was denied to them. Having that happen is way bigger than who has how much of a personal/social life.

It feels really awkward that this staf member felt like he had to prove something by telling us he doesn’t have much of a personal life. It feels even more awkward since he is then reported as saying:

And as for the clients, “they grow on you.”

Well, I’m glad we got that straightened out.

In fairness, we don’t have access to the context for this quote. Maybe it was referring to another comment or question that was left out of the article.

Sure, it’d be an adjustment to work around people who don’t communicate the same ways other adults do, who are sometimes violent or unpredictable, who have interests and hobbies we usually associate with children. But, if we approach any group with basic respect, they shouldn’t have to “grow” on us, except for the usual personality conflicts everyone has.

Further Reading

The Arc: Sexuality Position Statement

The Right to Community Integration for People with Disabilities Under United States and International Law

Already Doing It: Intellectual Disability and Sexual Agency

Oct 112015

It’s National Coming Out Day, and I’m thinking about people with disabilities who are queer, gender nonconforming, or both.

Queer and trans* people around the United States and Canada will celebrate this weekend. Some will come out for the first time ever. Some have been out for years. Some will never be or feel safe to tell people who they really are.

Because of assumptions and attitudes about disability, deciding when and whether to come out is almost never simple for most people with disabilities.

People with disabilities are thought of as nonsexual, as having complicated lives that revolve around our disabilities. People are surprised to know that we work, that we have relationships, desires, interests, human foibles. Often, people don’t imagine that we could be sexual. Or, they’re inappropriately interested in our sexualities. Bluntly put, we’re often seen as genderless and sexless..

Our world is still so dependent on the assumption that most people are the gender they were assigned at birth, and most people want heterosexual relationships. Take someone who is already seen as different, and the reaction to them coming out can be anything from dismissive to dangerous.

Take all of this and multiply it a few dozen times and you’ll have a rough outlines of the attitudes towards LGBTQ+ folks with intellectual disabilities.

People with intellectual disabilities are thought of as not being able to understand sex, sexuality, or relationships, let alone want or think about any of those things. (As if any of us get to say what anybody’s sexuality, or how they feel about another person, should look like!)

A person with an intellectual disability who comes out (on Coming Out Day, or any other time) might hear:

“They don’t know what they’re talking about.”

“Oh, isn’t that sweet.”

“They’re just repeating what they hear other people saying.”

These words are often used to dismiss what a person with an intellectual disability wants other people to know.
When this happens, a boy or man saying he wants to have a boyfriend might be told that he doesn’t need to have one, or that he has lots of friends who are boys, or that only girls have boyfriends.
Dave Hingsburger has written a lot about the barriers people with intellectual disabilities have faced, just for expressing who they truly are, about the difficult history around love and relationships especially.

The stories he tells are sometimes funny, sometimes touching, and usually heartbreaking. When other people have authority over where you live, who you se, what you do with your days (which happens for a lot of people with developmental and intellectual disabilities) disapproval of how and who you love, of who you are, is way more than disapproval. It’s interference, people exerting their will and making you be who you want to be. I recommend taking time to go through his blog archive. What you knew bout the world will be flipped on its head.

As a gay and disabled man himself, Dave’s perspective is especially sharp.

In the following story, Dave gives support to a person with an intellectual disability who is sharing that he’s gay and in love.

I told someone I was gay the other day.

I don’t do this often because I don’t have to – pretty much everyone knows. So it felt odd, pushing the closet door open and letting it bang shut after me again. This time, though, I came out strategically. I was just in conversation with a man with Down Syndrome who was talking with me, struggling with the fact that he was attracted to, and had kissed, another man. He thought he was in love. He was aching with pain, it was all wrong, he was dirty and sinful.

I couldn’t bear watching him. I couldn’t bear remembering the pain of feeling shamed for feeling loved.

I couldn’t bear watching him hurt.

So, I said, “You know I’m gay, right?”

read what happened next.

Sep 022015


Craig Handasyde has been sentenced to twelve months in jail followed by a 2 year “community corrections” order for abusing men over a 14 year period and keeping that a secret for another two years.

The judge had this to say about the nature of the sentence: “Every attendance {for supervision and mental health treatment} will serve as a reminder of the inappropriateness of your behaviour,”

When will we move past using words like “inappropriate” to talk about sex crimes? It’s more than inappropriate to, say, punch or steal from someone – it’s illegal. Unwanted and unconsented sexual contact must also be recognized as illegal, not reduced to being morally inappropriate.

The judge also cited handasyde’s deep remorse and guilt as part of the reason for the short sentence. These are feelings – moral consequences if you will – not legal or social.

Legally, this case is over, but the victims won’t forget. Their families won’t forget.

We shouldn’t forget either.


A support worker for people with disabilities recently plead guilty to sexually abusing some of his clients.

There’s so much wrong here that I don’t even know where to start.

We’re told that Craig Handasyde is a religious man, that he has eight children, that thirteen people (including two ministers) stepped up to give him a character reference.

We’re told that he voluntarily resigned from his job, and, later, turned himself in to the police.

Does anyone stop to question the time lapse between the last time he claims to have abused someone (2011) and when he resigned from his job (2013)?

Does anyone stop to remember that the abuse he’s admitted to and now claims to want to make amends for spanned thirteen years? (That’s more than a decade, half a generation.)

Do any of his esteemed thirteen references (one for each of the years he violated his clients’ trust?) stop to ask themselves how they could have so deeply misjudged this man?

We’re told by his lawyer that “What emerges is a picture of a man who is extremely passive and lacks the ability to assert himself.”

Let’s look at some other facts:

  • He admits to ignoring the efforts of one of his victims to push him away.
  • He invested time and energy in extra training and certifications, thereby winning the trust of his clients’ families and his employers. This means less supervision, more of a chance to do what he wanted, when he wanted.
  • Being an abuser is about control, and has jack all to do with sexual orientation or attraction. Translation: He didn’t do this because he’s gay.

Craig Handasyde is an abuser. He worked in a position that gave him power over others. He worked with some of the most marginlized and invalidated people. Maybe he felt as if he couldn’t assert himself, but he definitely didn’t act like it.

The claims Handasyde’s lawyer is making on his behalf don’t come anywhere near justifying his behaviour. After all, Where was the conscience that made him turn himself in when someone was pushing him away, telling him, more clearly than words ever could, to leave him alone?

We’re supposed to see a man who was in incredible psychological pain.

He may have been, but the hard truth is that this man sexually abused his clients because he wanted to, because he had no care or consideration for his work responsibilities or the emotional well-being of his clients, because he thought he could get away with it.

This man gets to be as religious as he wants, as gay as he is. He doesn’t, in my opinion, get to use these as explanations for abusing anyone, disabled or not, especially not anyone he was supposed to be protecting.

It’s frustrating, too, since this case just reinforces the beliefs that gay people aren’t safe to be around. The headline on one story about Handasyde’s crimes tells us that he spent years “hiding his homosexuality behind victims who could not communicate.” Again, one thing has nothing to do with the other. He didn’t sexually abuse his clients because he was gay, though he may have justified it to himself that way.

Handasyde’s lawyer is calling what he did a “secret life.” A secret life is having an affair, visiting sex clubs, doing stuff that isn’t criminal but that you’re still afraid to tell people about.

Describing a crime as a secret life lends it an air of mystery and eroticism it doesn’t deserve.

I don’t care how contrite Handasyde is now. He was not contrite for thirteen years. This was not a crime of passion, or lack of control. This was a crime of intention.

It’s also truly sad that his victims are portrayed as people who can’t communicate.

One of them did, by pushing Handasyde away. Another had a noticeable personality change, becoming more aggressive. Another victim’s mother describes him as not having a “happy nature” anymore.

Imagine not being able to tell someone how unhappy you are. Imagine not being able to tell them that someone is touching your body and doing other things you don’t like or want. Imagine trying to tell, and having peple not understand.

There are no easy answers, especially since most of the tools used for getting information from people who don’t communicate verbally are visual, and most of the victims in this case are blind.

I don’t know what could have been done to help these men be safe from their abuser, but it’s worth pointing out that in those entire thirteen years, no one ever suspected Craig Handasyde of doing anything wrong, or, if there were suspicions, no one ever acted on them.

There was never a formal investigation.

Will the judge who passes his sentence see through all these excuses?

Further Reading

Protecting Vulnerability


Resources for Self-Advocates

What Is Sexual Assault?

Invisible victims: Sexual assault of people with an intellectual disability

Sexual assault and adults with a disability: Enabling recognition, disclosure and a just response

Aug 282015

Then my behaviour therapist called, I asked him how to get a girl friend, he said he’d draw up a plan with a step by step process.

Did you know that there are 176 steps that you need to climb in order to get out of loneliness.

That’s a lot. Loneliness can feel like a deep pit can’t it?

One Step Out Of Loneliness, Dave Hingsburger

Watch this animated film from Dave Hingsburger It’s safe for work unless your workplace objects to words like sex and penis.

Read the transcript here. or watch below.

Jul 052015

June 26 was a history-changing day. Marriage laws in the U.S. finally caught up with reality – many people’s reality, anyway.

This ruling opens up a whole new world of fredoms. It solves some of the problems that transgender people wishing to marry have faced up until now and gives same-gender couples the option to marry if they wish.

But the work, the struggle, the heartbreak isn’t over yet. more than half of the states still allow LGBQ and transgender people to be discriminated against by current or potential employers. Incidents of violence against LGBQ (lesbian, gay, bisexual queer) and transgender people is still frighteningly

The legal battle aroud marriage equality has been about making sure that same-sex couples have the same rights and protections as mixed gender couples.

But, for many people with disabilities, no matter what either partner’s gender is or isn’t, marriage can mean the end of the same kind of safety and security other married couples count on. Not only do these couples have to contend with bias against, and disbelief of their relationships, but their financial security and access to health insurance is often removed or limited when they marry.

Love doesn’t always win either for folks with disabilities, especially for folks with intellectual or developmental disabilities. The love of and between disabled people is often discounted.

Love doesn’t win when people don’t take your desire to get married seriously. Love doesn’t win when you marry, but the housing that’s supposed to help you be as much a part of the community as possible doesn’t let you live together. Love doesn’t win when your wish to spend time with the person you love is seen as “cute,” or childlike. Love doesn’t win when you want to be recognized as a couple and do the things other couples do, whether you can legally marry or not, but the people around you, the people who are supposed to be supporting you, won’t let you do that.

Paul and Hava Forziano got married in 2013. Finding a place where they could live together proved to be a challenge.

It’s worth taking a good look at why the group homes where Mr. and Mrs. Forziano lived before marrying thought that helping them live together was “unprecedented,” “impossible” and “fraught with difficulties”.

IN defending these organizations, the legal team cited Mr. and Mrs. Forziano’s Individualized Service Plans (ISPs) as reasons why the couple could not live together and be adequately served by either group home. They label these plans as “complex treatment plans.”

An ISP is actually a “written personal plan, or blueprint, for a person with developmental disabilities that summarizes the help he or she wants and needs to achieve his or her own aspirations in life.”. Meeting residents’ medical and supervision needs is only part of the picture here. Actually meeting the requirements of Mr. and Mrs. Forziano’s ISPs would mean finding a way to help them live together, even if that meant referring them to another agency.

Not meeting Mr. and Mrs. Forziano’s “aspirations in life” – to live together as most married couples in North America traditionally do – is, I believe, backwards thinking. This is not what the community living movement is all about.

The wonderful part of this story is how supportive Paul and Hava’s families have been of their relationship, and of their desire to live together. Disabled people, especially developmentally disabled people, don’t often get that kind of support from their families.

Bill Ott and Shelley Belgard also have lots of family support. They’re not married legally, as doing so would reduce Shelley’s access to needed health insurance, but they had a commitment ceremony and live together. They live in a different part of the country, and their living support needs are different, so getting to live together after their marriage wasn’t the same sort of ordeal it was for Paul and Hava Forziano. Bill and Shelley had a tonne of support for being together, but still, when Shelley’s mother heard about their engagement, , her internal response was: “This, too, shall pass.”Bill and Shelley proved her wrong, and the couples therapist they worked with also went to bat for them. So, in addition to everything else Mr. Ott and Ms. Belgard had working for them, they had someone from the healthcare field willing to see that their disabilities didn’t diminish their love or their capacity to be together. Read the rest of their heartening and smile-inducing story here.

And one more story, among the thousands out there, most of which haven’t been told:

I won’t tell you much about the two men in this story – the two men who loved each other. You need to read this for yourself. It’s a capsule of discrimination against gay people, dismissal of disabled people’s wants and desires – and of love – and a reminder of this countrys history of cruelty and violence towards disabled people, especially by the folks tasked with supporting and helping them.

Here’s the story. I recommend having tissues handy.

Love did finally winfor these men.

Further Reading

Author’s Note

Referring to the couples mentioned in this post As Mr. and Mrs. Forziano and Mr. Ott and Ms. Belgard was intentional. I wanted to show respect for their relationships – their unions. Using more formal titles, and more formal language in telling their stories, was also a way to show that their stories are important, that we shouldn’t take them lightly. Since I don’t know them, consistently using their first names would have been overly familiar, and would have made them sound like children, not the adults they are.

Jun 172015

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.


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.