Yesterday Joe and I drove down to Saint Catharines as I'd been asked to do an hour and a half talk on 'Disability Pride' to a mixed audience of people with disabilities, families and direct care staff. The room was packed with close to three hundred people, I sat at the front, getting prepared - dealing with nerves - and listened to a fellow play keyboards for the crowd. Several people came and chatted with me, I knew a fair number of staff as well as parents as well as people with intellectual disabilities. When you've been doing this for as long as I have you meet people.
I spoke for the whole ninety minutes - with a brief stop for people to take a look at a handout - and for the whole time watched the audience listen and react. Some of what I was saying was terribly personal and makes me feel really vulnerable but it's what I need to say at this point in my life, this point in my career. I got encouragement from looking at the faces of those with disabilities. Nodding, sometimes crying, sometimes laughing, sometimes applauding wildly. I had looked at each story, I am a plain speaker - so plain language isn't hard for me - I knew that if I caught people's attention, it would work.
I had attention.
When it was all over, a line up of people with disabilities came up to speak to me. Many saying that they liked the talk, some saying that EVERYONE IN THE WORLD should hear the talk, some saying quietly that they really understood what I was saying. It was gratifying to hear from so many people with intellectual disabilities that they liked the idea of 'disability pride,' about being 'out' with having a disability, about the dignity that comes from self awareness. It gave me a sense that many had waited for a long time to hear what was said there.
Joe told me that he watched a mother and daughter sitting together listening, they cried a lot during the talk, they hugged a couple of times. The mother, involuntarily, pointed at me and nodded her head. Joe said, 'If she was in church she would have hollered, 'AMEN'. I loved that he saw that. I think that the upside of Disability Pride is that it attacks the very idea of shame. Why would any parent be ashamed of a proudful child living a life of pride and purpose? I believe that pride is the basic ingredient in the only antidote to prejudice, but I also believe that pride is the only ointment which has any hope of healing shame.
This was a new experience for me.
There was a time that I was part of the conspiracy of silence around intellectual disability. I never spoke of it with those I served, I mentioned it only in whispers in answer to the question 'what do you do.' No more. Never again.
I can say the word 'disability' out loud.
I can acknowledge 'disability' in a room full of those with disabilities.
I can, and will, take pride in the fact that we are finally taking pride in who we are.
Come spring ... come change.
Amen!!!! Amen.....
ReplyDeleteAs an ally and friend with many people who have disabilities and as a paid participant in the Disability Industrial Complex, I am often FRAUGHT with guilt about uttering words like; intellectual disability, deaf, blind, cerebral palsy, etc...
I think EVERYONE IN THE WORLD should begin the process of losing the labels, become prideful of who the heck they are (pimples, disability, beautiful, ugly and all) and just see humans as the vast spectrum we are!
In fact, more and more I am getting less guilt ridden and more excited about acknowledging disability as extension of the human spectrum...because that is what it is!!
Great post Dave...Amen...
Dave you were wonderful yesterday. I was one in that sea of faces and was, yet again, inspired. I invited friends of mine to come listen. They have a fabulous daughter who has Down Syndrome and they are learning about the world of disabilities, abilities, labels and expectations. I wanted them to learn about pride. They did, they left with tears in their eyes and they were inspired. Thank you again for reminding us of what's important and nudging us back into the ring for another round against hatred, bigotry and ignorance.
ReplyDeleteCeline - why didn't you come and say HI, it would have been great to see you!!
ReplyDeleteYou looked pretty contemplative before so I left you in peace. Afterwards, your fans had you surrounded!
DeleteDear Dave:
ReplyDeleteI think that helping people to hear the pride message is critical. People have been shamed for so long.
Your participants are right - EVERYONE IN THE WHOLE WORLD needs to hear this.
Who should I contact to arrange a presentation?
BTW - I think that is one of the things that make your work so powerful Dave, your honesty and willingness to be vulnerable. Thank you for that.
Colleen
Colleen, you'd just need to contact Joe - he's the keeper of the calander. They openned it up to the whole region and had people from every agency and most schools there. It was very cool.
ReplyDeleteDave.. just reading this brought tears to my eyes. What an exciting message to be able to share, and to receive such instant, positive feedback on... a new concept, perhaps uniting previous ideas of equality, ability, dependence, independence and inter-dependence (amongst other thems, I imagine..)
ReplyDeleteThough I am a little frustrated not to have heard it first-hand, whan an amazing blessing to be able to share in the moment with you by reading about it as you experienced it... a real red letter day...
please tell me it will be a part of your formation when you come to the UK later in the year?!
Best wishes, Hugh
Hugh, I only present on what I'm asked to present on ... so if someone asks, I'll do it in a heartbeat!
ReplyDeleteI'd love to see that talk, any chance you have video/audio that you can post?
ReplyDeleteDave, a video post of this would be awesome!
ReplyDeleteProud Mom of Sam
I was there. I am changed.
ReplyDeleteI'll be there next time! When? Where?
ReplyDeleteI reflected on the post - I would have loved to be at the day itself...I am excited to hear you will be speaking in the uk later in the year...when and where, Dave?
ReplyDeleteHeidi
I think some times we need to have descriptions of people's disabilities. NOT labels, not name calling - but some description. I'm all for inclusiveness - but I feel we still need some distinction. I would not be respectful talking on and on to a person who is deaf or throwing a frisbee to someone that is blind. I think awareness is important. You wouldn't thrust an extremely shy person into public speaking. You wouldn't want to cram a seven foot man into a mini. Whether physical, mental, or social - we all have limitations. It is only by education and experience that we can be more open, accepting and accomodating - as having access and inclusion - "as it should be".
ReplyDeleteWe can't go around just describing a person as a male/female and the color of their shirt. If pride is what we are looking for - then the disability - or different abilities - needs to be out there too.
No guilt.
I don't really buy into the 'lable' thing ... we only call something a lable when it's something others devalue. I am a gay man. My cousin has Down Syndrome. I don't see either as a lable. Disability, like sexuality and gender, is just a state of being. That's all it is. I'm not ashamed to refer to myself as having a disability because I do. That's just what is - the more you try to hide what is behind a forest of words the more shame is attached to it.
ReplyDeleteheidi, I don't know where or when yet, the schedule is still in the making.
ReplyDeleteHi I have an learning disability and i am proud of who i am and what I can do and I tell others that. I want the world to know I am proud of who i am and I talk about my disability freely. What I am going to say though is that....I am going to challenge you on what you said about people who have disabilities are different. We aren't different. Why because everyone in the world is different from one person to the next and so having a disability doesnt make us any different.
ReplyDeleteWhat is the fear of being different? We are all different. There seems to be no problem in speaking of the differences of an Einstein or Michaelangelo. If I can' see - I am different than most of the people I interact with. I would rather others know my limitations then have unreal expectation put upon me.
ReplyDeleteI dont have a fear of being different everyone in the world is different so him making him seem like he way more different than others doesnt make sense to me what so ever.
ReplyDelete