Saturday, December 20, 2008

taken aback

I'm going to be harshly honest, I was taken aback by the tone of the question, in yesterday's comments, regarding my disability. Perhaps because I'm tired of everyone associating everything to my weight. People assume I hate myself. That I ate myself into a wheelchair. That my weight is willful and my disability optional. I'm sorry but this all just pisses me off.

First, if my disability was related to my weight, why would that matter? Disability is disability. If you are in a wheelchair because you are a jock and you jumped into a creek and hit your head on a rock - no one says 'you only have yourself to blame'. Disability isn't YOUR club, it's OUR club, so stop watching the door. But ask yourself, why do you need to know, and what difference would the answer have made? If it would make a difference ... then there is prejudice and bigotry in the room.

Second, not that it matters at all, but my disability in fact has nothing to do with my weight, my diabetes or any complications thereof. I have chosen NOT to discuss the nature of my disability with anyone other than my doctors and Joe. It's none of anyone's business. If that leaves you scratching your head because I write a public and personal blog about disability, so be it. I don't feel that I owe you every part of my life, every part of my experience, every bit of information. I keep what's mine, mine.

I have always believed and fought for the right to privacy for people with disabilities. I was one of the first people to publish on this in journals, I was one of the first people to lecture on the necessity of privacy, I was one of the originators of the concepts of 'privacy as a right' for people with disabilities. I believe that we all have corners of our lives that we don't want people prying into. I believe that we all have things that we share with none. This doesn't make us secretive nor sly ... it just makes us human.

I know that curiosity is also part of what makes us human. As my friend Ruth used to say, "I might be naturally curious as to the size of your husband's dick, but goodness me I'd never ask."

Perhaps one day I'll write about the circumstances that led up to my life in a wheelchair, perhaps not. This is under my control and only my control. What's mine is mine, what's your is yours ... and what we agree is ours should be joyously shared. So, as it's my blog and my fingers doing the typing I'm the one setting the parameters here.

Yes, I'm fat.

Yes, I'm disabled.

That they are both true, doesn't make them one truth.


Anonymous said...

Wow, I just read all the comments from yesterdays blog. Amazing how it stirred such a passionate conversation on a subject that wasn't even part of the original post. I found myself thinking - how often do I ask the question and why. I had no problem agreeing with why ask - non relevant to anonymous but then started to wonder how relevant is it for those I support. Do I always need to know when it is work related. Does the why make a difference in how I provide support? Why is my work reaction different than my personal response? Thanks for making me ponder and check my own reaction. MDN

Andrea Shettle, MSW said...

Dave: My apologies for having answered the other "anonymous" question when perhaps I should have refrained. Her question did bug me too (and her follow-up response telling people to lighten up -- URGH!). But I had initially wanted to give her the benefit of the doubt, in the hope that the question wasn't meant to come across as potentially judgmental as it did. And I also had apparently misinterpreted some things you'd written earlier in the blog. Not my business any more than it was hers, just that I thought a partial answer had already been given or hinted it, so I mistakenly thought there'd be no harm in repeating it. I'm sorry.

Dave Hingsburger said...

Andrea, not to worry, I know from what I've written where you got that impression. Also, I absolutely know the spirit in which you answered - though we've never met, I have a sense of the kind of person and the kindness of person .. about you. So no apology necessary.

Andrea Shettle, MSW said...

Thank you, Dave, for putting my concern at rest.

Anonymous said...

One of the first issues I learned from your blog was the issue of privacy. As someone who works for social services I begin to feel that at times we have the "right" to too much information and yet we discard some of a persons most intimate memories as trash, not relevant to our assessment. The whole issue was highlighted for me following my last miscarriage when I knew everyone at work knew about it, as a private person that knowledge was horrifying.

It is an area of training and awareness I feel needs to be emphasised with social care workers. What do we really need to know and what do we do with that information.

I'll try not to judge anonymous too much as once upon a time I was probably just as niave. I only hope now I have learned and will continue to challenge myself.


rickismom said...

(a comment on overweight and prejudice.)
[I did not write in the above post (since my Mom reads my blog)that as a baby, I was FORCE FED (I was a premie, I understand they were trying to do their best). ]Does it seem strange that I came to equate food with love? Or does the casual observer see that I am dealing with (in addition to my weight) a seriously disturbed family member? No. Somehow it is all just a "lack of control". Wish it was that simple.....

Heather said...

Hi Andrea
I wanted to say how much I appreciated your comments. I thought your response to Anonymous was a really succinct statement of my problem with the question. Unfortunately my initial response was angry and I don't think that was helpful. Thank you for your clarity and for helping me get my own thinking straight.

abby said...

This discussion reminds me of this:

from Kathie Snow's website. It doesn't say anything that hasn't been said today or yesterday, but it's a good summation of all that has been said.

theknapper said...

Happy Birthday Dave!!!!!

Anonymous said...

I don't like it if I happen to tell people my daughter is disabled and they respond with "what's wrong with her?" I usually say nothing is wrong with her.
I don't like it when they respond, "What does she have?" although that gives me more answers to choose from, she has blue eyes, she has a puppy, she has a kind spirit, she has a sister and a brother.

In the group home where I work, part of the orientation I am supposed to give to new staff is to tell them what disability each of the men that live there are labled with. I do not do that. When it comes to that part, I always say it doesn't matter and I am not even 100% sure myself. I can tell them what the men need and the only labels I need to provide are their names.


~ Teresa ~ said...

You have a right to keep parts of your life private.... It is really not anyones business why/how you are disabled... I feel somewhat strongly about this as my own mothers body has aged and betrayed her before her time... She is overweight, and I know that people assume that this is why she uses the support of a cane and the electric carts at the store. In fact, other health ailments led to her being the size that she is... The stares from others and prejudices are hard to see... It really is noones business.

Anonymous said...

I think this internet world is too "out there" in terms of people being a bit too open sometimes. Therefore, some people don't think about the propriety of asking very personal questions publicly. My rule of thumb is "would I say this to this person's face"? If the answer is no, then I try not to write it either.

Having said that, as a workshop attendee a couple of months ago, I too found myself innocently wondering about the nature of Dave's disability (no, I did not assume that it was weight-related -- I was just respectfully curious/nosy I guess you could say). Overweight people get a bad rap all too often, just like mentally disabled people.

Having said THAT...I found myself wondering about the respectfullness of calling people "fat" -- I find it just as disrespectful (well almost) as hearing that awful "R" word.

Colleen said...

Dear Dave:

I have been thinking about you being left out in the cold and have been utterly appalled that something like this could and did happen. So appalled I did not know what to write - but now I do. First off - thank heavens you are okay physically. Otherwise though - to have someone you pay to provide a service for you take your wellbeing so little into account must be very hard to deal with. I hope that you will pursue this with all your might and that the persons who participated in abandoning you will be held accountable - and fired as their callous disregard for your safety clearly demonstrates that they are unfit for work with fellow human beings.

It has made me think of a young woman who is a friend who took a man to court. He had molested her when he babysat her as a child. She is Deaf. When someone asked her why she had pursued it and taken him to court even though it was a very hard thing to do and was emotionally painful, she answered that she wanted him to realize that she was not just some "dumb little deaf kid". In a similar vein they did not just do this to some guy in a wheelchair - they did this to a human being, who is loved and valued and who just happens to be one of the best advocates around.

The comments about weight - until we (as a society) get that loved and valued part for every human being on the planet - prejudice will abound.


Lene Andersen said...

Well said.

And isn't it weird that we have to advocate for the idea of privacy for people with disabilities? Yet another way in which we aren't quite human...