I spoke, yesterday, at the 8th annual A.C.E. conference - which is a conference for self advocates with disabilities. I'd been asked to do an inclusive keynote for both people with disabilities and their staff. These are way more difficult than you can imagine, with such a jumble of learning styles, with a need for the message to be inclusive, with the need to leave no one behind, it's way more work, if those goals are taken seriously, than you can imagine.
Well, I decided to go 'full tilt boogie' and do something radical. I wanted to talk openly about disability and difference and bring an aspect of 'pride in difference, pride in disability, pride in diversity' message. To people with intellectual disabilities much of this is new. Many are fed on the lie: we're all the same. Well, we aren't all the same. It's difference that gets targeted by bullies, by teasers, by name callers, by passersby who stare. It's difference that changes attitudes, closes doors, limits options, feeds bigotry. I believe that the only way to confront the bias without is to confront the bias within. So, I was going to take the chance and say, I'm disabled, most of you are disabled and all of us are different. Get used to it. Get over it. Come to value it.
I had four slogans that I wanted people to yell out at different parts of the stories I told:
I am what I am.
I know what I want.
I have something to offer
and one more for good luck,
I can't be who I want to be until I'm comfortable with who I am.
So, I hit the ground running (obviously a metaphor) and waited to see how people responded to an up front, out of the closet, disabled speaker who mentions the human condition that dare not speak its name - intellectual disability. Well, the floor didn't fall out under me. The audience didn't rise and tackle me. Some faces looked at me in shock but most looked at me with a ... finally, FINALLY, we're telling the truth. It was great.
Afterwards several people with disabilities came up to tell me stories, to thank me for my talk, to say nice things. I was in a rush because I had to drive a long way to the next hotel, so I couldn't talk long. One fellow, hung back a bit, but just before I left, he came up and tapped me gently on the shoulder. He had tears in his eyes, 'It's hard for me to say that I'm ...' and he couldn't say another word. I said, 'It gets easier.' He nodded and I rolled away, I stopped and looked back and him and called out, 'And it gets better.' A tear flowed down his cheek, he didn't brush it away, he just turned and walked back into the room.
I'm glad I had the courage to say what I wanted to say.
I'm even gladder that he had the ultimate courage, to begin to recognize who he is - he's now on the journey to self hood, he's on the journey home.
The truth does set us free.
It is such a powerful message that the way we are is okay...better than okey...good even. Once we are able to integrate that message so many things get easier. I"m not disabled, I'm a lesbian, but the same basic message made all the difference to my 20 year old self, long ago and far away.
I taught my daughter since she was very young that she was disabled. It is just another part of her, like her eye colour, hair colour etc. It is part of what makes her who she is, so it is a good thing. It means she learns in a different way than most teachers know how to teach, but that means they have changing to do, not her.
She is now a teenager. She hasn't had an easy road. She is often frustrated by barriers she faces. She is not ashamed to be disabled, and she will stand up to defend anything she sees as mistreatment of others based on her disability.
I think generations of children will soon be growing up with this understanding and non-disabled kids will start to get it.
We all have truths we keep locked up until we dare to reveal our fuller selves to ourselves and others. It is huge to be true to who we are without the shame that has no place in simply "being." Being disabled is no small part of a person and avoiding acknowledging it is to impute "wrongness" and "shame." I see that now, but haven't always, and I have you to thank for changing my perspective--not that I ever thought it was wrong--but I did think that it was not to be emphasized--which is a subtle denial.
*based on THEIR disabilty
I have been reading your blogs every morning for about a month now. I just wanted to thank you for being you. It shines through all that you do. Once again you have made a difference that will last long beyond your speaking engagement. You make a difference each and every day.
I have been Deaf since birth and my (hearing) parents raised me with basically the same message--I knew all along that I was deaf and that this was okay, just part of who I was. And that it made a difference how I communicated. And that it meant I needed to educate others how to communicate with me, even if it might become annoying sometimes to explain the same simple-seeming things over and over.
And yes, all this made a good difference for my self esteem. I feel sad when I learn of parents trying to tell their child that they're "just like everyone else" when they actually aren't. I know that approach is very well intentioned, but I think it causes more damage than help. I have met adults who were raised that way, and usually it just meant that they grew up berating themselves for not being able to "keep up" or do certain things just as well as everyone else--because if they're really just the same, then shouldn't they be able to? Usually they end up being hit in the face at some point with the realization that no, they're NOT the same as everyone else. Then they face a long struggle learning what that means to them and figuring out how to accept that and be okay with it and feel good about themselves. It takes so long because after all, they've been taught that being the "same as everyone else" is good and desireable, which must mean that being different is bad, yes? Not the message their parents meant to teach, but that's often what they end up absorbing. And it takes time to unlearn that.
CAM, it sounds like you're on exactly the right track with your daughter. People shouldn't be afraid to be different, or to notice difference--because difference isn't bad, it just is.
There is such a difference between "you're just like everybody else" and "you're different for (whatever reason) from many people, but you are no less worthy and deserving of opportunity." I think the second is something along the lines of what the first is trying, but failing, to say.
I was fortunate enough to hear you speak about this at 5 Oaks this morning, Dave. It struck such a chord with me and many of my coworkers, and generated a lot of conversation for the rest of the day. I have no doubt that this message will continue to be shared throughout KW Hab and beyond. Thank you so much. Beth
It is liberating. Embracing who and what you are is so very important.
this is great! I'm so tired of people who think that intellectually disabled people don't know they are disabled. If anyone is acting like they don't know, it's because no one ever talks about it like it's some big secret, and because it's really stigmatized.
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