I'm going to try to do this without offending half the blogging world. Several people have responded to my request for quotes, primarily through my email address and a few in the comment section. I haven't had the occasion to really look at anything yet as I've either been in front of an audience or in the car most of the time. However several people have asked, some in hostile tones, why I just don't quote blogs with the names that people have assigned themselves and leave it at that. Why do I want real names, would I change my mind, have been questions asked many times.
No, I'm not going to change my mind. I'm going to try and explain why.
A few years ago, when I was working on the book "Four Sight" I went with someone I met at a conference to an institution graveyard. I stood there, in the middle of a large field that was covered with plain markers. None of the markers had a name on it. Instead case numbers were printed in simple script. I was told that families didn't want people to find out, on a casual stroll through the graveyard, that they had had a family member with a disability, a family member who lived and died in the institution. These names were secret, these names had a power that these lives didn't have.
Names. The gay community became powerful when people got names. A minority that could have hidden forever lurking in the shadow cast by the majority chose not to. A few brave souls chose to give themselves names. To be public, to identify personally and powerfully with a community that was only struggling to be recognized. I knew some of these early activists. George Hislop and Ronnie Shearer were both heros and friends of mine. They spoke, one evening over dinner, about the decision to have names, to be 'out', to stand their ground.
Names. One of my first jobs in the field of disability I had to sign a confidentiality form. It was explained to me that I would be privy to information of a personal nature and that I needed to be sure not to share that information. That made sense to me. Then it was explained that I could never use an individual's name in conversation 'outside'. That even when talking to friends and family about my job, I couldn't say a last name of anyone and that it would be best if I refrained from first names as well. I wouldn't want to 'bring shame to the family'.
Names. When working on the documentary 'Life, Death and Disability'' which aired on CBC Radio One here in Canada, I interviewed leaders of the disability movement across North America. The subject of names and of identity politics came up over and over again. The idea that people with disabilities had to 'come out' as disabled people was oft said and the idea of a prideful movement was taking root. People I interviewed, to a one, were publically identified with their disability and their community. These people had names.
Names. Dave Hingsburger, disabled man. Dave Hingsburger, gay guy. Dave Hingsburger, put my name on my grave, identify me as who I am, who I was, who I was created to be. The book I am working on will have not even the slightest whiff of shame. Of a lack of identification with the people, the community, created by the experience of disability.
I know that on the internet there are all sorts of reasons for not using a real name and that shame has nothing to do with the decision. There are nutbars out there that can get weird attachments and there are stalkers who will stop at nothing to violate a person's life ... I get that. I have been twice subject to death threats and will never again have a home address that is public knowledge or a phone number that is unlisted. It is a reasonable choice to publish on the net under a chosen moniker - but to be in the book I'm putting together, real names go with real words. The book has a point of view, mine.
Name it, proclaim it.
I was going to submit a quote but as I'm only prepared to do so under my blogging name it's of no value to you. Personally I feel that could be considered just as discriminatory as any other oppression of those with disabilities, but that's my view point and it's your book!
ReplyDeleteI come from a different generation, I grew up with disability around me. Although my parents don't exactly accept mine that is for very different reasons than you talk about here.
Why won't I submit under my 'given' name? It was given to me. I don't like it, had no choice in the matter. Choosing a name is part of my identity as crip. It's also that my given name is hugely identifiable, add to that having a 'rare' condition and in my view it's asking for trouble. I live alone and as an attractive woman, that makes me vulnerable in certain ways and I just feel it would be stupid to draw that kind of attention to myself.
Bendy Girl
Dear Dave,
ReplyDeleteI hear both sides of this debate and wonder if people could submit their comments using a nom de plume OR their given name - providing they are willing to submit their given name to you with the proviso that you do not publish it? I understand some people's reticence . . . and I also share your belief that our name is important.
Just some thoughts . . .
Susan Ludwig
I agree with you Dave. Words are powerful things. They start and end wars. They make you soar, and take you to very sad places. We need to realize the power of our words and own what we say to and about other people.
ReplyDeletePerhaps if we had to own our words all the time, we would be a bit more careful in our distribution of them.
Betsy
Interesting debate Dave.
ReplyDeleteIt is your book - though you may miss out on some good perspectives from people who choose not to share their names. Susan makes a good point, but your book sounds like it will also make many good points, and I do understand your intent to have names to recognize a submission - to honour it's creator.
I have chills from reading this Dave.
ReplyDeleteNaming has such power.
I'd be glad to send you a quotation separately and don't think someone would be able to readily attach it to me, but I can't come up with any specific to my disabilities. Too rare? I can think of some humorous comments about my disabilities, but that's not the single statement I'd want to make about them.
ReplyDeleteThis naming issue is interesting. I debated for a long time how I wanted to approach a blog and read many disability blogs for a couple of months before starting my own. After reading about Elizabeth's (Screw Bronze) issue with devotees, I decided to be as anonymous as possible and not to post photos or give personal information. I always have the choice to undo anonymity or to reveal myself--life wouldn't come to a halt if my identity were revealed. But I can't undo listing my name.
I also feel more comfortable blogging more personal medical information than I share with most people in real life. I couldn't do that if I shared my name--I would self censor. I don't want people to know that much information because they judge me for it. That does put me in the closet, so to speak, but I have found that mentioning my difficulties at all or trying to explain them, why I can't do something, gets me labeled as someone overfocused on illness.
The truth is, I am overfocused on illness in my blog--it's the place where I can drop my fears and concerns and leave them there.
To those who, as I've learned, have recently expressed that they think I'm an unqualified affirmative action hire (despite most people not knowing about my disability until recently; they forget that), knowing more about my individual challenges would give them confirmation that disability disqualifies me. People see what they want to see. And suddenly people think I'm an idiot because I use wheels.
I've been struggling with this naming thing as a young disabled woman who's still trying to make a name for myself in my chosen field. I hope you've thought about the place of privilege you started from as an able- bodied male in the social services. It's a very different atmosphere when you are young, female and disabled. Coming of age post- ADA (in the states) I anticipated a culture that would be far less prejudiced than is the case. While I regularly talk about disability issues in my blog, I don't usually write explicitly about my own personal experience out of fear (the tacky f word)that some hiring committee will google me and turn me down for one of the few "dream jobs" that come down the pipes in an excedingly competitive field. Youth can make you vulnerable, any number of circumstances can... I see your point but I'm betting that the anonmyity factor has played a huge role in allowing for this revolutionary conversation on disability within the blogosphere to surface- I don't think this relatively safe space should be overlooked entirely and you haven't because you're addressing it by talking about it.
ReplyDeleteAll that said, I see no harm in disclosing one's name for inclusion in the book that you are describing.
Dave didn't start out in a position of privilege as a gay man in human services 30 years ago. Homophobia was rampant and Dave was one of the few who had the courage to name himself. Still is one of the few who are out in human services. I remember being at a conference years ago and hearing about this Hingsberger guy who was advocating for the right of people with disabilities to be sexual. I'm amazed all these years later that he's survived. Dave, you won't remember me, but it is still a source of shame to me that I didn't have the courage to support your work when you needed support. I know the battles you've fought as I've followed your career. You've never backed down from a fight, you've never compromised when others crumbled. As a gay man in human services who is still afraid to name himself, I thank you. I get what you are saying, even if others don't. It took me a while, too long, but I get it. With sadness for lack of courage I write only as anonymous.
ReplyDeleteDave, this is really hard because I almost always agree with you and I respect you so much. You have influenced my life and career. But I have to speak out and say my piece.
ReplyDeleteI agree that naming is important, especially when it comes to minority identity and representation. But I'm reluctant to get on board with you here.
My reluctance about names isn't so much about being "found out" or "unmasked" (although that is a really big concern, especially in academic fields where being open about invisible disabilities can be risky if you are trying to get tenure). But more like I don't feel comfortable with the importance of a "real name." As if my given and family name define me. As if a chosen name isn't "real."
My name does mean things. It talks about my family, my ancestry and where they came from. About their religious beliefs of my parents and their love for me.
So while this name means things are important to me and my identity, I will be not privilege them above parts of me that it doesn't convey by proclaiming it my "real name." As it's been pointed out, we do not choose our given names.
For example, my last name in part speaks to my family's beliefs about "pulling yourself up by your bootstraps," something I don't believe in.
More important to me is that names typically are gendered. When we learn a "real name" we often feel confident of the "real gender" of a person. On the basis of a name we decide if we will use he/him/his or she/her/hers. My name conveys I was born a woman. It says that is how my parents and most often the world sees me. But many days I don't identify myself as such.
The gravitas given "real names" is often used against transgendered/transexual people as a way to "prove" they are "really" the gender they were proclaimed at birth. The idea of a "real name" is used to harass and intimidate trans people. Imagine getting pulled over in a conservative, rural town and knowing that the name on your driver's license doesn't match your gender presentation. "Real names" can fight fear and oppression but unfortunately are used to create a lot of fear and oppression.
Transgender/queer and disability issues have a lot of overlap and a lot of give and take. I am sad to say that reading what you said I feel excluded. As if to have "real words" I need to use my "real name." Well my real name is whatever I call myself today. Just like I will not bow to what the medical field calls me and what the patriarchy calls me, I will not bow to my given name. That is the importance of naming myself.
I name me and I proclaim me. And if that's not good enough, as they say, I don't want to be part of your revolution.
=)
I suppose you won't get any of my quotes then.
ReplyDeleteIf you could give a good reason for wanting my name, I'd consider it, but this post seems to be just an appeal to feelings rather than a real argument.
Just because I don't use my real name doesn't mean I'm ashamed, or my identity is erased.
Dunno guys. Don't know what all the fuss is about.
ReplyDeleteYou can name yoursef whatever you like in your daily life or your blog. I do not use my children's real names on my blog, simply for general privacy reasons, and they have nothing to do with their disability. But it's my blog, not theirs, and not their choice to write about their lives in the public domains.
But Dave is writing a book. A book that has more impact if coming from "real" people (and while you can argue over the meaning of the word real, we have to accept the general meaning here for this purpose). So. that's the premise.
You're either happy with that, and then you send Dave a quote, or you're not, and then you let it be.
That's why Dave gave you a choice.
My problem is not that he wants real names. It's that he's making it out to be that people who don't use their real names are ashamed or scared.
ReplyDeleteOn the internet, there is this culture of what you might call 'chosen identity'. Rather than being defined by your history and the people you know, you define yourself. That's part of it.
Another thing is that so often, things said by disabled people are taken as 'just your personal experience'. If you are anonymous or (to a lesser extent) if you use an assumed name, it makes you seem more like 'everyman' - you could be anyone. That's why Amanda Baggs at first did not reveal her name on www.gettingthetruthout.org
Don't quote us if you don't want to. It's your loss. But don't assume we're ashamed or scared just because we don't use our real names. (And if we are, is that a good reason to silence us?)
Hi Dave, I met you in 1990 at a conference in Toronto and I've looked up to you ever since. I love your work because you say it like it is. What did it for me is your sense of humour. I just finished your book on Do, Be, Do. I just hope that I can "Be" like you are for so many people. Your footnotes are the best. Thanks.
ReplyDeleteFrancine Roy
Dear Dave:
ReplyDeleteAll I can think of as I read this entry is my daughter, Cari. Cari was born with Cornelia de Lange Syndrome and she lived for 4 years. In her 4 short years she brought immense joy to us and she taught me more than I could ever have imagined. When she died friends offered her a plot in an old country church cemetary. It was an act of kindness and we accepted. Later when we wanted to place a marker on her grave we learned that for various reasons which I won't go into we could not. My husband and I thought about it long and hard and decided that we needed to move her body to another cemetary so we could place a marker on her grave. We had spent much of her short life making sure people knew that she mattered, that her life mattered, that she was a valued human being worthy of respect and dignity at the very least. We simply could not leave her in an unmarked grave. Deciding to move a child's grave is not something one does lightly - it was probably one of the hardest things we have done. Now there is a marker.
You write: Dave Hingsburger, disabled man. Dave Hingsburger, gay guy. I think Carolyn Elizabeth Orrick, beloved child. That is what is on her marker.
Names are important.
Thanks for your writing and all you do
Colleen