Sunday, July 28, 2013

Spontaneous Acts of Solidarity!

There are moments that I'm just really proud to be a member of the disability community. Really proud. When I mentioned this to a non-disabled co-worker she assumed that my pride came from the 'insperational' stories. The 'I climbed Mount Everest! If I can do it, you can do it!' kind of thing - which I hate holus bolus.

What moves me into a state of awe is when I see generous kindness from someone with a disability, to anyone, but also to others with disabilities. It seems that there can be a hierarchy within the disability community - I care about my access, not yours! I care about my liberation, not yours? There can be as much prejudice directed at one part of the disability from another part of that same community as there is from the general populace.

So when spontaneous acts of solidarity happen, I am moved.

This morning I was moved.

Andrea had left a comment on my blog about the radio program that I appeared on. She asked if there was a transcript that she'd be able to read. I admitted that there was not, I had in mind to ask someone to make a transcript so that I cold post it. Then, this morning in my email, from one of my readers, was the full transcript, it came with a request that I send it on to Andrea. I did so immediately.

I decided that I wanted to write about this and wrote to the person who'd emailed me the transcription. They wanted, needed, no acknowledgement.

So, for those who needed the transcript, here it is ...

David Hingsburger on CBC Radio Interview on The Confessional, Episode Five - "Faking It" edition.

Interviewer: You're listening to the Faking It edition of The Confessional on CBC radio One and across North America on Sirius satellite radio. I'm Chrissy Holmes.

Interviewer: Dave Hingsburger is an advocate and spokesperson for people with disabilities. In public seminars he teaches others how to stand up for themselves, but Dave confesses that a three-year-old girl named Ruby made him realize that he'd been faking a big part of his personality for years.

Dave said it all started at a poolside table at a resort in Walt Disney World, alongside his young friend.

Dave Hingsburger: So she came back to the table and I gave her a towel, and during the period of time that they would have been in the pool, another family had come and they were seated maybe four or five tables off to the side. And there was a mom and dad, and there was a young teenage boy, and then there was a little girl of around Ruby's age. And Ruby noticed that little girl, and she's very social, and she was glancing over at her, and she started making her way over. And as she did I had noticed that they have been talking and laughing but I hadn't been really paying much attention to it. As she was getting closer I was listening and I realized that what they were talking and laughing about, was me.

They were making fun of my weight; they were making fun of the wheelchair; they were using  words that I had heard my entire life: fatso, lard ass, pig face; they were making pig sounds. And they were finding it very, very funny.

Interviewer: So what happened when Ruby went over there?

Dave Hingsburger: As she got closer, and they saw her come from my table, they didn't stop. As a matter of fact I think they picked up a little bit. So when Ruby got close enough, she heard the words for the first time. And she looked over at me, and there were tears in her eyes, but I was very, very pleased she didn't cry. And she looked at them, and I, and she just planted herself to the ground. And she took a breath and she said, "Dave!" And then there was a pause, so she took a breath again and she said, "Dave," and she pointed at me and said, "Dave, Mine!" she said.

And in that moment she just, she claimed me. And she claimed me knowing who I was, but also knowing how I was seen by others. And she ran back to me and I gave her a big hug and I was crying. And it had some profound changes in my life and even in how I present myself to the world.

Interviewer: How did she make you feel in that moment?

Dave Hingsburger: I've been fat my entire life and I'm not just fat, like you know, when people say, "Gosh, I feel so fat," and really they just need to burp. Like I'm actually truly extraordinarily fat. Okay? And I'm also a wheelchair user. It's interesting people make a connection between the two, but there is no connection between the two. 

Every single time I go out into the community, every single time, I receive staring, people make remarks. Total strangers do remarkably cruel things to me, including today on the way to the studio. And to a certain degree you grow a bit numb to that.

I guess when that happened, and she said what she said, I understood that not only was it possible for Ruby to claim me, it was possible for me to claim me, in a different way.

Interviewer: Now, people who know you might be very surprised to hear that you were so deeply affected by this. Tell us why that is.

Dave Hingsburger: Well, I think it's a bit because of what I do. I have worked in the disability industry for very long time. And I work with people who have intellectual disabilities not so much people who have physician disabilities; I have published several papers; and I have written several books; and I give lectures on an international level. I think a lot of people who see me assume that there are certain things that are true because of what I do. And that is that I must be full of self-confidence, and that I must be full of self-esteem, and I must have those magical ingredients that apparently you are supposed to have if you put yourself in front of people.

And I don't think that most people know the degree to which it's a battle for me. I have extreme anxiety, particularly when I'm going to be lecturing in a place where I've never been before, because I know the moment that people come into the room and they see a fat guy about to give a lecture there is an expectation that it's going to be bad.

Interviewer: Do you feel that you'd been faking your confidence a bit?

Dave Hingsburger: Oh gosh! I still do, but less so.

Interviewer: How did that moment change you? What did you realize about yourself after that happened?

Dave Hingsburger: Let me answer that in a little story.

Two days later, I needed to buy some, some clothes, because I need lecture clothes. So I went to a Mr. Big And Tall. So I got in my wheelchair just in the door, and they had a bunch of the kinds of shirts that I wanted to buy hanging up on the wall. And, and the fella said well just point to the ones that you wanted. So fat people know how to dress. I mean we wear black, and we wear dark brown, and we wear dark green, and we wear dark gray. Fat people wear dark colors, and I've been told that my entire life. And that's all I have ever worn. And there was a bright, bright yellow shirt. And I asked the fellow if they had it in my size, and he said that they did. And he actually came all the way across the store, all the way across the store, and leaned down and whispered to me. He said, " It's yellow." And I'm like, "Yeah, I know." You know? So I bought the yellow shirt. I didn't think I'd ever, ever wear it. And then, when I was back home, I was going to be telling some people the story about Ruby and what happened. And I wanted her to hear me tell the story. So I wore the yellow shirt that day. And when I finished the story, she came and gave me a big hug. And she said, "It's like being hugged by the sun!"

And you know I now dress exactly the way that I want. I'm wearing a shirt today that actually has yellow in it. I don't care so much. You know I mean? I think, now  I'm totally okay with being seen. You know? I'm loved. I'm claimed. And it was wonderful that Ruby claimed me, but the next step was for me to claim me, and that's sort of what happened.

Interviewer: Dave Hingsburger lives in Toronto.


Anonymous said...

Thank you! to the person who scripted it down. I could not listen to it on the website because my ipad would not play the format.
Now I too know what important story you did tell.



Susan said...

I love having it in writing... because I love the story SO MUCH - but I leak.

And it's perfect that the transcript for this story came out of community... It's perfectly apt.

Jan Goldfield said...

Thank your transcriber so very much. I have a data cap on my satellite internet, so was unable to listen to you. As always, your words are so powerful.

Anonymous said...

Thank you for the transcript. I couldn't get it to play either. So glad I didn't miss a Ruby story.

And yes, wear yellow! Wear what ever you like! Although I'll admit to owning eight identical black shirts. (They had black left at the end of the season sale). I'll have to look for a yellow shirt too.


Anonymous said...

Hi Dave--as a very large woman, I learned the lesson of yellow a few years back myself. If you saw me today, I'd have purple highlights in my dark hair, and be wearing colorful prints. I know, prints! It's so liberating. I don't try to dim myself down any longer. It feels like a miracle sometimes, just to be the color-filled person that I am.

Andrea S. said...

Thank you to the person who transcribed this video, I appreciate your help!

Moose said...

Recently I was part of a conversation where someone felt the need to tell everyone how "gross" it is when fat women wear sleeveless shirts.

I responded that I want to have dinner with the guy just so I can wear one of my sleeveless shirts (or maybe a tank top) and watch him squirm.

You (the generic you, not Dave) do not get to be Fashion Police. You do not tell me what I can and cannot wear. You cannot tell me that I should cover up the scars on my legs. I really don't care that you find my arm fat "gross".

The funniest part of wearing what I want is one of my sleeveless shirts. It's got a red background and is covered with construction signs and equipment. For some reason every time I wear it in public people think I'm a nurse. Apparently it looks enough like some of the scrubs out there. This has lead to some moments of hilarity at doctors' offices.

And this is what happens when you generalize and assume.

Louna said...

What I noticed in the comments here is how many people were glad to get the transcript for other reasons, mainly because their technology didn't allow them to listen to it. It reminds me how time and time again, when we make things accessible for people with a disability, we also make life easier for plenty of other people. This should be irrelevant - access for us should be enough of an argument - but it's certainly a useful argument.

Anonymous said...

I want to add my thanks to the person who transcribed this. I listened to the broadcast and liked it enough that I wanted to read it again. In fact, twice.

But I have a question for Dave. I'm honestly confused what makes an act of kindness like this more awe-inspiring when done by someone with a disability. In my limited experience (and I don't work full-time in the disability industry), it's no more or less unusual for a disabled person to be kind, generous, or helpful than it is for anyone else. What made it stand out to you as unusual?

Andrea S. said...

Anonymous at 21:50 on 29 July '13: I'm not sure if you'll see this (since I'm responding a few days late). But I didn't interpret Dave as saying that generosity, kindness, etc. was any more *unusual* coming from people with disabilities. I think the point was more that it's good to see us come together as a community and support each other in gaining the access and accommodations we need.

As Dave mentions in his post, people with disabilities do sometimes perpetuate the same kinds of ableism that we encounter in general society. As a Deaf woman, I see ableism all the time in the Deaf community--deaf blind people are excluded because they need to touch your hands to understand your signs and some sighted deaf people don't want to bother. Deaf people with cerebral palsy are excluded because their cerebral palsy may result in signs that look different (because their hands move differently), and others aren't used to understanding signs made that way and don't want to be bothered to learn. And so forth.

But there is also a cross-disability community in which many people with disabilities have learned to extend to others what they wish more people would do for themselves. For example, sometimes people will write transcripts or captions for videos for people like me who need them. Obviously I cannot return this specific favor (or I wouldn't need help with it in the first place! :-) ) But there have been occasions when I have contributed a description of a picture for people who cannot see the pictures or done other little things.

I know I usually feel more comfortable getting assistance from the disability community (esp if I need to depend on strangers) than I do from non-disabled people (esp if from strangers) because I feel like there is more of a chance I can give something back. If not to that specific individual, then perhaps to other people with other disabilities ... who also can be in a position to give something back, if not specifically to me then to others in the disability community and so on. Sometimes with non-disabled people, I worry that they will eventually become impatient and angry or even hostile if I push too many times for the accommodations I need. (I worry because this does in fact happen, sometimes even with people who seemed so nice and eager to help early on, so it is hard to ever feel completely safe). I know people with disabilities of course can occasionally be grumpy just like anyone one. But I feel less worry that they will abruptly turn on me and start acting resentful the way some non-disabled people do, because they've been there and are in a better position to understand how vulnerable it can feel to have to lean on other people's good will just to get by in ways non-disabled people never have to think about.

So for me it is more of a "communal" feel when this kind of help comes from within the disability community -- we are all in it together... we are advocating for our rights together ... and we are also providing for each other's needs together. Not sure if this is quite what Dave had in mind, but this is the meaning it has for me. Hope this made some sense.

Bev Dyck said...

My family heard this article on CBC and we were all horrified. My 19 year old son said 'What? I don't understand." And as you continued he said " Not in Canada! They didn't talk to him like that, did they?"

Now I am following your blog. Sir, I am so incredibly sorry that people are so unkind to you. Thank you for sharing. Bev