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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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.

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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

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