Wednesday, March 28, 2018


During the course of my work the last few weeks I have had the opportunity, privilege really, of teaching people with intellectual disabilities about their disability. I don't do this lightly and I never do this without a context for it because I don't know how well prepared people are to talk about their disability.

I've noted before about how people with intellectual disabilities, in my opinion, are less likely to have been told about their disability and, further, most likely been lied to about their disability. The lies are always framed as kindness. 'You are just like everyone else,' is simply an outrageous lie. The denial of difference leads to pathways of pain and self hatred.

When being becomes a secret hidden under loving lies, self esteem and pride are smothered to death. They are mourned by the actual, real, self.

So, it's a touchy thing to talk about with people who may never have heard their disability directly spoken about. While I never speak of a particular individual's disability when teaching, I speak about intellectual disability and what it means and what it doesn't mean.

In doing this recently, twice in a couple of weeks, I was really anxious as to the response. I've only done it once before and I had a positive response, but that's no predictor of how others may do.

But when both the sessions were over, I was really relieved. First because it was done. Second because of the reaction of the people with intellectual disabilities who attended. They loved it. They loved hearing about and learning about the disability they experience. They, of course, know that they are different, but most have been told that their difference doesn't matter and all know that's not true. So to hear information that they could identify with was a powerful experience.

One young woman at one of the sessions, "I feel like it's okay to just relax and not have to pretend all the time." One fellow said, "My parents are going to be upset but I'm going to tell them I'm disabled, they keep saying I'm not, and then I'm going to tell them that it's okay, I've always known."

These statements sounded an awful lot like the sentiments of those who 'come out of the closet.' And that's because it's the same thing. Coming out as different and proud is a powerful experience no matter what the difference is ... pride in self is simply electrifying.

I don't know why I was so anxious ... the journey to pride for me, in every way that I experience difference, has been one that has lead to embracing truth and discovering my okayness.

Being out, living out, claiming out, that's the path that we who are different must tread in order to embrace ourselves.


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clairesmum said...

Your anxiety seems sensible to me - you know how powerful your presentation is, to whose who are able to hear about disability pride. You are aware of your responsibilities to teach and also to do no harm..or as little harm as can be managed, when presenting powerful information that can be life changing.
The anxiety is the shadow side of the joy of being part of that life changing moment. You know that words hurt....and heal

Andrea Shettle, MSW said...

I grew up with attention deficit disorder--but nobody knew, not me, my teachers, my parents or anyone else. I was not evaluated for it until I was in my 20s and starting graduate school for my first master's degree (the first being in social work). Even today girls with ADHD are still underdiagnosed--and they were even more profoundly underdiagnosed when I grew up in the 70s and 80s. So it just didn't happen then. There were actually two separate occasions during my teen years when people knowledgeable in ADHD (according to the levels of knowledge available then) asked if I had ever been diagnosed with it. And then they both immediately decided I must not have it because it was still believed at the time that ADHD could/should only be diagnosed in young children and could not be a new diagnostic label introduced in the teen years due to better understanding and knowledge about ADHD in girls.

Meanwhile, I grew up always knowing about my deafness. My parents spoke about it with me openly and freely and comfortably. I don't remember a time when I didn't already know (though logically I cannot have known before age 3, since that's when I started learning language and started acquiring enough vocabulary for my parents to explain such things to me).

I wish I could have known so much earlier about my ADHD. I wish I could have been diagnosed in perhaps the 4th grade, when I tried to ask my teacher to send me back to the principal's office again to do all of my classwork there (not just once) because it was so much easier to focus in a reasonably quiet place where all the distractions of a classroom were removed.

I wish I could have known before people frustrated with my procrastination and difficulty staying on task when I wanted to stay on task started accusing me of being "lazy", or "using my deafness as an excuse to not work" (when I was already trying the best I knew how, and when my deafness was not remotely relevant to why I had so much trouble concentrating on my work and was not a thing I wanted to use to get out of trying hard).

It is so important for young people with disabilities to grow up being able to talk about their disabilities comfortably, without stigmatization, just an honest acknowledgment that yes certain things are more challenging, and there are some strategies that adults with the same disabilities use to work around those challenges. Open dialogue is crucial. Also crucial is an opportunity to meet role model adults who share the same disability (or failing that, at least a chance to read about some of them and how they lived their lives.)

Anonymous said...

Dave, have you ever considered creating a webinar, or a youtube video of you speaking on this topic?

I teach high school students, primarily students with ID, and so much of their high school journey is about figuring out who they are, and what it means to them to have a disability, and what story they want to tell the world about themselves. I'd love more resources about how to have conversations on this topic, as well as resources to share with parents who need to be having conversations at home.

Girl on wheels said...

I didn’t become a wheelchair user until I was an adult, but my chronic back pain started at around 7 years old. I wasn’t diagnosed with Scoliosis until I was 14, I can remember being in the car on the way home from the hospital and just bursting into tears. My dad and grandmother thought I was upset about getting the diagnosis and knowing I would likely need major spinal surgey, but actually I was crying with relief. It was amazing to finally know what my body didn’t work like other people’s, why my front rolls and handstands were wonky, and why I was always in pain. I’d known something was wrong and to be constantly told that there wasn’t had really undermined my confidence in my own judgement. Getting that diagnosis felt like a huge weight had been lifted off me.

When I became a wheelchair user back in 2012, I was really quick to call myself disabled which really distressed my family. But it was the same thing, it was finally having a word for my difference. By 2012 I’d been struggling to walk for two years, and for two years before that the pain had been severely limiting my life. Being able to claim that title of disabled and of being a Spoonie made me feel like I fitted somewhere, and led me to communities of people who understood my experiences. If I had resisted claiming those words like so many people do, I would have been so much more isolated. It wouldn’t have made me any less disabled, just because I didn’t use the word. I really don’t understand that idea of raising your child not to see disability, or not to claim their community, all you are doing is making them lonelier and more frustrated with their difference.