Right now I'm working on an exciting project with a terrific team of people. Our goal is to create a series of comic books, or if you prefer 'short graphic novels,' that will feature people with intellectual disabilities and their various quests for love and relationships. They will look at dating, break ups, intimacy and, without being completely graphic in one way it won't be too graphic in the other, sexuality. The goal is to create a resource with accessible information presented in an accessible format.
The team at the sexuality clinic of Mackenzie Health's Behaviour Management Services of York and Simcoe, and I, have been discussing various story lines that we want to include. We've already been fleshing out possible stories and characters in the story. Two of the people will be based on a couple I met years and years ago, when they were in their late teens, a woman with Down Syndrome and her boyfriend with Cerebral Palsy. What struck me about them was their love for each other but also the responsibility they showed. They knew, from watching TV, that there were diseases you could get from sex, they wanted to be safe - so they waited, asking questions that weren't answered - until they could make responsible safe decisions based on information. I was lucky enough to have them in a series of classes that I taught.
They caught my imagination at the time and I thought that their quest for information and how they survived the frustrations that they faced quite inspiring. Before the class ended I had come up with the idea of creating a series of comic books that would tell the story of the lives of some young people with intellectual disabilities AND provide information of love, relationships and sexuality.
I put sex last on the list because, as I've said before, that in all the years I've worked with people with disabilities in the area of sexuality, I've never been asked the question, to which the answer is "penis goes into vagina." The questions I get asked are "how do I find a girl/boyfriend" or "how do I know if s/he likes me" or even "is it OK that my heart speeds up when s/he kisses me." These are the kinds of things we want to deal with. We also want to deal with situations that are common to people with intellectual disabilities like the approval of those who have, or feel they have, the right to disapprove of their love and relationships.
Here's why I'm telling you all this. At our last meeting we discussed reaching out to you, the readers of this blog, and asking you to give us some ideas for situations or barriers that people with intellectual disabilities face (remember at least one of the characters will be using a mobility device). We'd also like to know what kinds of things do you think should be included, most particularly if you are a person with an intellectual disability - a curriculum is going to be hidden behind the stories we are going to tell - so what needs to be there? Do you have a story line that you think should be included? Please, please, please, ask those with intellectual disabilities that you parent or serve what kind of stories they'd like to read about and what information they'd like to learn. That would be helpful too.
I applaud the team at the sexuality clinic for embracing this idea with such passion. It's a resource that is needed and one that puts information, literally, into the hands of people with intellectual disabilities. So, if you are of a mind to, would you give us ideas and suggestions in the comment section of this blog. Thanks!
Hi Dave,
ReplyDeleteI would like to see the subject of same sex relationships and also pornography discussed. It has been my experience that both of these subjects were sadly treated as taboo subjects by the parents and support workers involved. This lead to labels such as sex offender and deviant, the only thing this attitude achieved was shame, embassment and confusion for the person with an intellectual disability. Ultimately these attitudes placed already vulnerable people at more risk. I look forward to hearing more about this project as it evolves.
I'll ask my son tonight. I'm pretty sure it will be along the lines of "how do I get a girlfriend". What concerns me - as a parent - is watching my son accept some bad treatment from girls. I'm sure it works both ways. But, I hope you include something about respect for each other and self - and not only when it comes to sexuality. My son wants a girlfriend so badly that he really doesn't care how a girl treats him - and I've been kind of shocked at how badly some girls treat boys in the world of intellectual disability.
ReplyDeleteI know you've probably considered this already, but some story about how penis and vagina isn't the only configuration for sex and relationships.
ReplyDeleteI would like to see a resource explaining the progression of an intimate relationship - beginning with introductions/acquaintances and working up the continuum. This has been clearly outlined by the folks who advocate "Abstinence-only-sex-education" and I have worked it into my presentations to parents and care-givers' eduation. Of course I don't adhere to abstinence-only-sex-education, and their research is helpful in finding "landmarks" in the physical progression of a relationship. I would be happy to share what I have.
ReplyDeleteSusan Goharriz (don't remember my "Google account" name!
Hi, thanks for the feedback so far ... want to assure you that same sex relationships will be included (also from the point of view of meeting, developing a relationship etc) it won't be tagged on content.
ReplyDeleteI would like to see a story line of where to access condoms and lube etc. I have seen a lot of information of how to use condoms and all but not where to get it, in a drug store, health unit what ever and how to handle question for those who are providing the products. Question like "why do you need this?" and other barrier like questions.
ReplyDeleteI think any kind of education/information attempt about sex and relationships must must must include some pretty comprehensive stuff about refusal and consent - asserting and clearly communicating your own, and respecting that of your date.
ReplyDelete"No means no" is a great start for this, but as you've sadly had cause to observe on this blog before, when you're accustomed to having strangers poking around your body and your life on a daily basis in the name of care, medical treatment, welfare applications and so on, it can be that bit more difficult to remember where your right to No begins and ends.
I hope you'll include the notion of "enthusiastic consent." 'No means No' is a good first step, but many women and lots of folks with intellectual disabilities have been socialized to comply wherever possible and make a deflecting excuse when compliance would be problematic - so 'No' doesn't get said as clearly as would be nice.
ReplyDeleteBy teaching people to seek 'enthusiastic consent' for the next step in a developing and potentially sexual relationship, we can help people of all genders and orientations make good choices and communicate clearly.
Other things I hope get included: how to put on a condom without tearing it or setting it up to burst; how to use a dental dam for oral sex; that porn sex doesn't often much match real sex between people who love each other.
And the real killer: how to defend your relationship from so-called 'well-meaning' outsiders who think they should 'protect' people with cognitive disabilities from such experiences as heartbreak, sexual victimization, and love. Some 'what to say to an interloper,' and also 'where to get help if someone makes a big deal of it.'
I have a few ideas shared from a few adults I work with who are affected by an Intellectual Disability.
ReplyDelete#1 One couple are wanting to marry, however neither families of the individuals wanting to marry are supportive of the idea.
#2 How to recognize when you are being used and abused in a relationship. (emotionally, financially, physically etc.)
#3 Dealing with ex's (In a new relationship but ex- b/f or g/f are interfering in the relationship.)
I'm not in the community of people with intellectual disabilities or their families, but one thought is to send the message that there is more than one way to be intimate: as long as it is kept safe and enthused consent is present among participants there isn't really a "wrong" way to do it.
ReplyDeleteI agree, "No means no" isn't really adequate in a culture in which women and girls in particular (and also people with intellectual disabilities in particular) continue to be sent the message that they aren't really allowed to say no. Or at least, not allowed to be blunt in saying no. As Mary raises here, the concept that only "yes" actually means "yes", that only enthused consent counts, is important.
This is a concept that is taught and discussed at great length across many blog posts at this blog site: http://yesmeansyesblog.wordpress.com/
Masturbation! I have seen this topic handled so badly over the years I have worked in this field.
ReplyDeletePlease include at least a hat-tip to asexuality - it's obviously not going to be a focus, but a lot of the time stuff like that tries to be reassuring by saying that everyone has those feelings, or that those feelings are natural (with the implication that not having them isn't), and that just isn't true across the board.
ReplyDeleteI grew up with my cousin who has an intellectual disability. He was always a big kid to me, but he was really a grown man.
ReplyDeleteHe got along wonderfully with children, but because of his age people were often afraid that he was molesting them.
I think it's important for a person who is intellectually disabled to know when it's ok to be friends with a younger person. How this differs from being a girl/boy friend.
My cousin would often say...his girl friend, when he was referring to just a friend who was a girl. He is loud and rambunctious. And if you don't know him he can be scary.
I know he would like to have a relationship like his parents, but really didn't understand it all.
I think it's very important to know that a relationship...girl/boy friend...doesn't have to be sexual. And just because someone loves you, doesn't mean they want to do that, and you shouldn't feel you have to. Even if you you have done it before, it's ok not to want to the next time.
When working with children about sexual abuse, we talk a lot about "Funny Tummy Feelings". If someone touches you or even just spends time with you and it makes you tummy feel funny, and not in a good way....you need to talk to someone you trust.
Too many times children with intellectual disabilities are taken advantage of, they want to be liked, and want to fit in...they are told they will be if they do certain things.
These children need to know how to recognize that this is not the same as having a healthy relationship.
Good luck with your project.
Our son is twelve and has Down syndrome. He is heading down that "sexual discovery" road already. When you have older brothers you tend to want to follow I their footsteps........something for pre-teens would be great too!
ReplyDeleteDifferentiating friendships from deeper relationships. I've seen a model called circle of friends and touch is defined by the circles( for cog. Impaired folks).
ReplyDeleteMost of the challenges that have come up with people I support have been with adult males who through counselling have discovered that they do not differentiate age well. They cannot identify a 13 year old girl from a 30 year old woman for example. It really seems to be a big challenge for a lot of men with intellectual disabilities and has lead to many misunderstanding in the community and inappropriate internet use. Some education on age laws with sexuality and the seriousness of these laws would be good. I think the rest is up to supports in this matter.
ReplyDeleteDave when you come o Wales in April there will be two days of people coming on that very subject so will leave it to you to bring up. I might just ask people to think about it a bit beforehand.
ReplyDeleteHi, I suggest making sure to note online safety issues. Have you seen this? http://www.specialbridge.com/preparing-your-child-with-special-needs-for-online-dating/
ReplyDeleteMaybe don't post this comment - but check out the link.
Good Luck.