Wednesday, September 29, 2010

Happy Anniversary ... Sort Of ...

I just had my four year anniversary as a wheelchair user. I don't keep track of these things, but Joe does. He's great on dates and remembering when things happened. We talked a lot about 'the day I became disabled' and the scary days that led up to the wheelchair. It's a story I don't tell often, I've told very few people. I managed to tell a friend the other day, as we had a long ride together in a car, the whole story from start to finish. It was surprisingly difficult to tell. I'm not sure I have emotional distance enough yet from my own story.

Over those four years of wheelchair use, I've grown as a person, I've grown as a clinician and I think my understanding of who I am has changed. Even though I've always been 'different' ... fat ... gay ... sensitive, I still very much experienced the 'privilege' and 'entitlement' that goes with being able bodied. I didn't see the world as it existed for others. I didn't see lousy curb cuts. I didn't see single steps into stores. Access, to me, was a given. All that changed, simply by sitting down.

Suddenly I became the one who sat in waiting rooms, rather than the one who kept people waiting. I became the one who was being assessed, rather than the one doing the assessment. I became the one who wondered what others wrote about me, in front of me, while we were talking, rather than the one who casually took notes. I became the one that was the other. It was a shock to my system. It was a shock to my way of thinking. It woke me up to a world that was much different that I had known it to be.

Today I had to see my doctor and a specialist to talk about my disability, my mobility and, of course, my health. After reviewing that I'm healthy and active, decisions were made about future and about tests and about medications. Then, suddenly, we were talking about living with a disability. The specialist wondering how I was coping with 'the rampant, the unacknowledged prejudice' that comes with disability. I was a bit surprised. But suddenly the three of us, with Joe quietly listening, talked about life as a person with a disability in a world that worships perfection, as a person who moves differently in a world that fears that very difference. It was odd. It was good. It was wonderful actually. But it was odd. I didn't think that Doctor's knew, somehow, about prejudicial attitudes.

I left realizing that the discussion I had just had, I needed to have. I needed to talk really openly, without reservation and without fear, about who I am ... now. How I live four years after. Being disabled isn't so much about disability, as everyone knows, it's about much more than that. It's about living without the privileges of others. It's about finding the word 'self' inside the word 'diagnosis' ... it's about losing some things and gaining others.

We didn't have a cake with four candles on it.

We didn't have a celebration.

But we did have conversations, with friends, with doctors, that we've never had before. In those conversations I discovered a vocabulary I didn't know I had. A vocabulary that allows me to finally begin to say the things I have yet to say, the things I truly need to say, the things I'm still a bit afraid of saying.

Stay tuned ...

26 comments:

Trish said...

I'm thinking that spending even a week in a wheelchair would be an eye-opening experience for anyone... maybe we should set up a program for that!

Blog editor said...

"Being disabled isn't so much about disability, as everyone knows, it's about much more than that. It's about living without the privileges of others. It's about finding the word 'self' inside the word 'diagnosis' ... it's about losing some things and gaining others." I like the way you put that .... and perhaps the kicker is that 'disability' embodies the lack of choice the person has about taking it on.

Jill

Kristin said...

I'm glad the day turned out good for you.

The Untoward Lady said...

Aye, Dave, I can definitely relate. I'm a very open person about the "facts" in my life yet telling people about the way they make me feel is often... lacking.

I think to most people who know me all they really see is the stalwart woman. The woman who's proud of who she is and happy with her life. All the time.

Yet, at the same time I am a woman who is not always happy with who she is. Sometimes who I am has left me in tears and it is not unheard of for me to quietly cry myself to sleep over my diagnoses, my transsexuality, or my history of violence.

I think coming out emotionally regarding who I am is vulnerable because it is true that I am proud of who I am. It is absolutely true that I see dignity and pride when I look at myself. I want to be the way I am and I would resent it if I had been denied the opportunity to have lived my experience.

Yet at the same time it is not always easy to like who I am.

It seems like a contradiction, but it's not.

I suppose I'm afraid that people wouldn't understand.

theknapper said...

Looking forward to what will come next....in your time.
I sometimes think that I'm learning important lessons second hand...like I get the understanding without the work.

BenefitScroungingScum said...

I'm only a couple of years ahead of you in the getting used to disability journey, but you reflecting upon yours has helped me with mine. This is what I meant in one of my earliest comments to you.

I think that in time, those of us blogging about our lives with disability as the focus will be looked upon in a similar way to those disabled people who fought to be educated. This telling of our lives and prejudices we face as a matter of course, is something which needs to happen to build towards to full inclusion.

BG Xx

Dave Hingsburger said...

I can't tell you the number of times I've had to give people time to find the words to tell their own story ... I always thought I had the time and had the words ... to learn otherwise surprised me. I guess at nearly 60 it's a shock to discover that I'm still growing and changing. Somehow I thought I'd be cooked by now. Anyways, thanks for the comment and for understanding that this is a process ...

Tamara said...

Happy anniversary, Dave! I guess my family could say that same thing to one another when Shawen's birthday rolls around. Even having a child and a sibling with a disability is an eye-opening experience.

So many people see it as a burden - as I was so severely reminded just yesterday. Yet, for most of us, it's more of an awakening.

I will keep those words "living without the privileges of others" - with me always and always look for ways to lessen the sting of that loss, ways to gain those basic privileges that were removed the moment he walked into the world with that extra chromosome.

Manuela said...

Those of us that face challenges, whatever they may be always have 2 choices. We can let them imobilize us - freeze us from further growth, action and thought or we can work around them, learn from them, teach others and ultimately advocate for change. I was always told you have a choice, become angry and withdrawn or become a teacher and leader in making a difference. (Sort of what doesnt kill you makes you stronger) I have always tried to be the latter but there are times that its so easy to do the other. I was fortunate to have someone in my life who reminded me of that choice when faced with either my own disabillty or that of my sons. That someone was a different person each time. I think your one of those people. Keep teaching and inspiring and thank you for sharing.

liz said...

I am able-bodied, but because of your blog I now (sometimes) see the inaccessibility of lots of places. Thank you for blogging your experiences.

Betty said...

Hey Dave, Thank yo for sharing. It is hard to understand how it is to walk in another's shoes until one has actually done so.

Good job bringing this to our attention.

Sheva said...

It is interesting the path we find ourselves on. Paths we never thought we would take, paths we never thought would be ours. Sometimes these paths can knock us all on our tushes, and I know this might sound crazy but I love how you regulary stand up and not let life knock you back down. Love your blog Dave I read it everyday.

Brenda said...

You said, "Anyways, thanks for the comment and for understanding that this is a process ..." It is indeed. In fact, isn't all of life a process, disabled or not? After all, it's not about the destination, it's about the journey. Proud to be strolling along beside you, and happy to hear what you have to share!

PS - Happy Chair-iversary!

MoonDog said...

I am ablebodied. I had no idea what challenges faced a person whose body doesnt work typically. There are handicapped bathrooms and automatic doors, isnt that enough? I mean really what do people expect? and then came my Sophie. She may or may not walk, she is nearly 5 and yet to take a step. as I struggle to support her in her difference I also find msyelf thinking ahead to when she is indepndent. the doors that are supposed to open but dont and no one seems concerned enough to fix them. the handicapped bathroom stall that is always the furthest from the entrance door. The transfer bar in the bathroom that is partially unscrewed and downright dangerous and yet after several complaints remains exactly so. the "handicap accessible bathroom" that is barely big enough to turn around in much less maneuver a chair and transfer. the way people look on and never offer to hold a door as I struggle to get her through a door that doesnt open itself and I have to hold it open and push her through as well. Yes I can see there is definitely a different and lesser world available to those who function outside of the typical. is it fair? NO WAY~! is there much I can do about it? I dont know. I fight what I can. but until the people who CAN function typically step up and say I refuse to shop here because it isnt wheelchair friendly I dont think much will change. well now hows that for a comment. you wanted comments! and now you got em!

Robyn said...

Totally not this same but yesterday as I was pushing my sons in their stroller I saw, really saw how inaccessible so many places are. I stopped for a moment and though "Gezz, Dave would flip over this!" You speak to my heart so often and I sure love that some mom in Kansas wonders so often what a "different" man in Canada would have to say about so many situations. Blessings, my friend.

Colleen said...

Dear Dave:

Thank you so much for sharing this journey with us. It gives me some words for my own journey, some insight. More importantly it helps me to be sensitive to the journeys of others.

Colleen

Anonymous said...

Living without privilege.. that really struck a chord. It somehow makes me not an annoyance, a whiner. it turns the picture. Thank you Dave.

Lene Andersen said...

"the rampant, the unacknowledged prejudices." Okay, so I have a sinus infection and that always makes me weepy, but to hear/read those words out of the mouth of a doctor, even secondhand, made me tear up. Because it was acknowledged, said out loud, by someone other than us. What a relief.

Congratulations on the breakthrough. It takes a while, but I'm glad you're getting closer.

Dave Hingsburger said...

Lene, I know, TWO DOCTORS, I've talked with my doctor about mobility, about wheelchairs, about all issues surrounding disability but never about living with prejudice. Somehow I really didn't think they'd know ... I guess that's my bias ... it was simply wonderful to have that conversation and to have my experiences validated in that manner.

Andrea S. said...

Dave,

I think I have the same bias about doctors. I tend to assume that they are so focused on the medical aspects of disability that they just don't see how much more of an impact prejudice can have on our actual day to day lives. Which isn't to say that an impairment has no impact or that it's unimportant, but so few people who AREN'T doctors really get how small the direct impacts of impairment seem compared to the actual impact of the negative attitude and assumptions of others and the way these attitudes can spill into the entire environment, even the way buildings are designed and services delivered.

I can't promise to comment every day (even though I read every one of your blog posts, if not on that day then on some subsequent day soon after)! But, see, I'm trying! :-)

Holly said...

My one year anniversary is coming up on October 26. Rather than a wheel chair or a scooter, I have a cane and a walker. Because I can't feel my feet, I fall over. And I'm on Coumadin for a deep vein thrombosis, so falling over is very, very bad. Along with a few other issues, all this adds up to needing assistance.

Rather than limiting my life, having to use an aid has expanded my life. I'm no longer afraid to walk around the Mall by myself, no longer do I have to wait for my husband to be with me so I can go buy yarn.

I don't have any other strikes against me. I'm not gay and I'm not fat. And I'm probably the worst disabled person in the world because I use it. Just last week I parked in a metered spot and put in the maximum amount for 30 whole minutes. I went into the shop and did my business. When I came out a meter man was standing by my expired meter (I was about 5 minutes late). I hobbled up to him and in my nicest grandmom voice with my biggest smile I told him I was SO sorry but I couldn't move fast enough to get back in time and I'm so sorry and I would have gladly paid for 35 minutes if they had had it. And he smiled and said to not worry about it and changed the ticket to a warning, saving my 75 dollars.

I recently served jury duty and got the courthouse to change the assist bars in the woman's bathroom. What good are assist bars that go across the wall behind the toilet? I need help getting OFF the toilet, not standing over it. I might have balls but I still don't stand to pee. And they changed them. :)

The lack of curb cuts, the manual doors that are too heavy for me to open, the lack of handicapped parking, the lack of elevators in multistoried buildings are all annoying. But they aren't aimed at me. They are just tangible evidence that the world is shallow and needs enlightening.

You see a barrier and it makes you angry and I think the balloon over your head often says "Not again! Why can't stores be decent and do what's right? Do I have to deal with this forever??"

I see a barrier and my thought balloon is much different. More along the lines of "Oh good! Another opportunity to enlighten someone who doesn't know."

If I couldn't get into a grocery store, as you couldn't the other week, my approach would have been much different. I'd have called over the manager, smiled nicely and given him my shopping list. And said something along the lines of "Since you're keeping me out, I'm sure you won't mind doing my shopping for me. I'll wait here until you're finished."

My mother is in a wheel chair. When her polling place was changed to a building that is not wheel chair accessible, we sat at the entrance and asked the election judge if she was going to let me vote twice, once for me and once for my mother. They quickly changed her polling place to the accessible library.

I know I'm very new at this disabled thing but I wonder if things would change if you changed your expectations. I've always found that people live up or down to what you expect. If you expect problems you usually get them.

Try to laugh more. Every day you wake up on the green side of the grass is a gift. As long as you don't see dirt and roots, be glad and smile.

I love you.

Kristine said...

Wow, that is one impressive doctor. That's definitely a rarity. I'm impressed by anybody, not just doctors, who "get it" with any kind of depth, without having lived it themselves. Disability is much more than a medical condition. The layers of prejudice and social privilege run deep... accessibility issues are part of it, but as you know, only one part. And once a person really starts to pay attention, you realize there are all levels of social privilege, prejudice, and (mis)understanding within the disability community as well. Some of us are more or less accepted by the world around us. Diagnosis, cognitive ability, independence level, appearance, and length of time with disability all factor into the equation.

I hope that someday you're able to share your "becoming disabled" story. When/if you're ready to share, I'd love to hear it. :)

Andrea S. said...

Holly,

I really really love where you say this:

"
If I couldn't get into a grocery store, as you couldn't the other week, my approach would have been much different. I'd have called over the manager, smiled nicely and given him my shopping list. And said something along the lines of "Since you're keeping me out, I'm sure you won't mind doing my shopping for me. I'll wait here until you're finished.""

.... I probably would never have the courage! Or if I did, I would probably be feeling so angry and frustrated I would have trouble pulling off the sweet, innocent, confident smile I think would need to go with this! But I greatly admire anyone who thinks they could do this and wish I could be a "fly on the wall" to watch you do it -- and watch how others respond!

Tamara said...

Hi, Dave! I just stumbled across your blog and am so tickled to find it!

I so appreciate your willingness to plow through your feelings and your experiences so publicly.

Yours is an important story to tell.I look forward to reading more.

Tamara G. Suttle, M.Ed., LPC
http://www.AllThingsPrivatePractice.com
http://www.TamaraSuttle.com

Joyfulgirl said...

hope to get to hear that story of yours some day.

J said...

Not normally one to respond (read yes, but not respond) but this one I felt compelled. I have to admit as someone who does not yet have a (visible at least) disability/impairment I can only imagine how much your life has changed. At the end of the day you have encountered, I'm sure, constant inequities and biases in your day to day. The world loves normalcy and hates accomodation. It's an anniversary for sure and it's up to you (not us) to decide whether or not it's one to celebrate or reflect upon. This is one of the most open and honest blogs I've read and for that I felt compelled to say how much I enjoyed it. Thanks