Monday, December 29, 2008

Life Lessons

In the quiet of a winter evening, sitting having tea on the couch, it comes back to me. That moment I was left, on a dark freezing cold morning, outside my office by a WheelTrans driver who was deaf to my pleas not to be left alone. Like all traumatic incidents, it hasn't left me and I don't have the power to just let it go. The memory visits me at inopportune times - but this time is a good one as it's quiet and I have time to think.

I realized, for the first time really the reasons why people with disabilities are reluctant to report abuse. Unless the research is wildly wrong, there is a lot more abuse than there is abuse reporting. I've wondered about this, academically, over the years. But now, having been the victim of an abusive act by a care provider. I understand much more deeply the motivations to keep silent, to just let it go. I grabbed a pen and quickly jotted down the list.

1) Terror and fear of reprisals. The very next morning after I had been left in the cold and I'd called in to complain, I was due for another ride on the same transit system. The computer called and told me two things, that I'd be picked up just after 8 and that I'd be picked up by the same company who's driver had let me off in the cold. As I was dressing on the bed I began to panic. My sock hung from my hand and I was frozen in fear. Joe came in and asked what was wrong. I told him that I was afraid that the driver who came today might be a friend of the other driver, that I had to get into a van alone with him and wouldn't know if I was safe until I got there. Do they all know each other these drivers? Are they all gunning for me because of my complaint against one of their own? Joe said things meant to assure me, they didn't.

2) Misplaced empathy. For the first several days after this happened I felt dreadful. I didn't want this guy to lose his job, I asked the WheelTrans Customer Care not to fire him. It's Christmastime for heaven's sake. He probably has a family. I felt incredible empathy for this guy and what he'd be going through because I called to complain. Only later I realized ... he. left. me. out. in. the. freezing. cold. and. felt. no. empathy. for. me. or. my. concern. that. I. might. die. I was feeling empathy for a man who felt no empathy for me. I probably worried more about him than he did about me sitting out there in the cold. The victim is NOT responsible for consequences that befall the victimizeer. That's a huge chunk of learning right there.

3) Shame and Self Blame. How could I have gotten myself into that situation? Many people I talked to said things like, 'I just would have refused to get out of the van' or 'I would always make sure I had a cell phone' or 'Why didn't you have a key for the office'. All these questions have rung in my mind like a bell tolling over the grave of my personal power and my personal effectiveness in the world. It wouldn't have happened to others because others are more capable of living my life than I am. It's easy to say 'I would have refused to get out' but when the driver isn't hearing you and pulls out your chair and is insisting you get out ... the role of obedient cripple is easy to fall into. I know about protest. I know about making noise. But that's Dave Hingsburger. I wasn't Dave Hingsburger, I was an anonymous passenger on a bus. I didn't have Dave's power. (I hope that makes sense to you because it certainly does to me ... now.) And as to the phone and the key, how could I plan for this to happen, until it did, it was unthinkable. Yes, I now have a key. Yes, I now have a plan. But these things come afterwards, not before.

4) People don't take abuse of people with disabilities all that seriously. The way I look at it, this guy coulda killed me. That morning was freezing cold. I was wearing sandels not shoes (I was going into the van and into the building, I didn't think I needed shoes). I wear a sweater not a coat. I wear gloves that are meant for wheelchair pushing not for warmth. Yet when I've told people, they make the right noises about what happened being horrible but I can tell from their tone that they think I'm being a bit 'over the top' about it. I don't mean to be critical of readers of this blog, who are by and large a wonderful lot, but even when I blogged about being left out in the cold on a dark winter morning. The comments devolved into a series of questions about the nature of my disability - like the topic of being disregarded by a care provider and dumped into a cold parking lot was barely interesting enough for a comment. If you check you will see that 6 comments were about the incident with the driver and 9 comments were about my weight, my disability and a discussion thereof ... I wanted to scream: What is it about the pain and fears of those with disabilities that make them seem less important than the pain and fears of other 'real' people? (Note: I like all comments and wouldn't comment on comments unless they relate to the point being made. So please don't be worried about being picked on for comments, I love them - as do all blog writers.)

So I understand things now I didn't before. I've been lecturing and teaching on this topic for along time.

But now I understand in new ways.

I'm pulling out my lecture note today, and making changes.

17 comments:

Manuela said...

I am glad you wrote this. It made me think in amazement of those that we support who have reported abuse against their care providers. I could feel the fear you had the following morning - it was totally reasonable to me that you would think that way, yet not once did I think about how someone we support might feel after they have reported. We are quick to respond, remove the "alledged" abuser and think the person now feels safe. But do they? Are they thinking things like what will the other staff think, will they be back, are they friends, will they get me for what I did.... Its amazing they report and frightening to think how many may not. I guess we have another project for 2009 - looking forward to how this will change what we teach to both our members and staff.

Alia said...

I am glad to hear you have tools to prevent such a thing from happening again, such as a key to the building. I know that now I am in a chair, I feel the cold much more distinctly than I did when I could move around more freely on my own.

I think perhaps you need to contact the transit company again and ask that some form of discipline be exacted on that driver, as you have realized that his neglect could have killed you, and such an action definitely needs to be addressed.

Belinda said...

You met "the system" and that is bigger than we who are on the other side, can imagine. The people in "the system" have such power. How can we change that? How can we turn it around, because it needs to be turned around. If in 2009, we set out a plan and took some steps in that direction, it would so valuable. You are uniquely placed, straddling both sides and therefore having understanding of both.
This awful experience was a gift to us as we start 2009. I hope I think of it every time I am face to face with someone and am tempted to not hear what they are saying. I mean that in all conversations. I am not always a very good listener.

Wheelie Catholic said...

This is a very important are to discuss, Dave, because the undereporting of abuse (as a result of the factors you discuss) adds to the misperception that there isn't much abuse and that pwd are treated benevolently by a system we can somehow "trust" to be "parens patriae".

I have seen rooms full of people with disabilities who sat without speaking out of fear of reprisal - losing essential services upon which they depend, for example. Easy to say they "should" speak up, but how do we get from where they know they have no protection if they speak up to a safer place of empowerment? We deal with caregiving that includes physical dependence and a form of trust and a vulnerability that just makes it very hard for many who are already isolated due to issues like poverty, lack of transportation, etc. to break away from an abusive relationship.

It broke my heart when I read about you being left in the cold. Happened to me too a number of times and my body just breaks down quickly in harsh weather, either hot or cold. Scary stuff. Human beings shouldn't be treated as if they're sacks of clothes or boxes being dropped off at a destination.

Lisa said...

Dave,
I am glad that this horrible experience will help teach others so maybe it won't happen to them. Other than that, all I can say is that I am sorry for what happened. I didn't post last time, because I felt so bad I simply didn't know what to say.
Lisa

Deb said...

Hey Dave,

A good friend of mine taught me about the horrible, dignified obedience that people with disabilities sometimes shroud themselves in, to survive various personal caregivers and systems.

This is a tough woman, a brilliant advocate, a woman who was the first in her province to win her fight to live independently. And so, because of her strength and wisdom, I used to think, why don't you stick up for yourself!? Why don't you shout ABUSE!! from the mountaintop?

That is, until the day I witnessed her transportation nightmare first hand. It completely brought home to me the vulnerability of ppl. with disabilities, and the very frightening potential for abuse of power by those paid to provide care, transportation, etc.

I'm glad that you now have a plan, a key, etc. But I am very saddened
that this experience was what prompted the plan. What happened to you is unforgiveable, and the driver most certainly should have been fired, for his incompetence, cruelty, and perhaps most of all, his outright apathy.

The only positive nugget I can find in all of this, is that your disability will make you an even better, even more profound speaker, advocate, healer, and teacher, because you now have true "inside information" that no matter how much experience you had with others, you did not have for yourself, in terms of disability. (Marginalization, yes, but not disability.) Now, you do. And no one can take that growing knowledge away from you.

A writer (sorry, can't remember who, and I am quoting, badly) describing feminism, and women trying to have it all, once said something like, "It is not so much trying to figure out if we can have it all, or even how to have it all, the answer lies in finding ways to live with the constant hum of tension that is the struggle itself."

I think this is true as well of the fight for equality for ppl. with disabilities.

Hang in there Dave, and remember, it's better to be loud and proud than frozen to death, damnit.

Deb Hamp

One Sick Mother said...

Dave,

Excellent post.

This is a very potent issue. These types of issues not only effect the disabled, but also parents of children with disabilities. I am a member of an online support group for moms of special needs kids, and I cannot tell you how many times I have heard parents say they will not push too hard for their kids for fear of retribution on the child, or for other reasons similar to the ones you described here.

Oh and because they "don't want to deprive a needier kid"...

(Don't even get me started on that last one)

Nuff said.

OSM.

rickismom said...

Well-made point.

Colleen said...

Dear Dave:

This is an awful way to learn - but I am absolutely in awe of you because you are reflecting on this horrible experience and using what you are learning from it to help other people. Thank you, Dave.

Colleen

Cynthia said...

Your original post has been on my mind a lot since you wrote it. I worried that this would hurt you more than just being abandoned, cold, and frightened, which are bad enough. Abuse lasts longer than the incident, and clearly it still is happening to you. I'm glad you have reported it. I'm glad you are writing about it. I'm glad you will use this to teach others about it. I hate that it happened.

Tamara said...

I've always found it helpful to "listen" to people with physical disabilities describe their challenges because it gives me insight into the challenges my son with a cognitive disability (Down syndrome) may face, especially when he may not be able to verbalize how he feels about the situation.

This is really quite frightening. If "the Dave Hingsburger" has this many fears of reporting abuse, how many more fears does my son face when the first difficulty is the actual act of telling someone what happened and making them believe it?

And we wonder why some parents of adults with cognitive disabilities get a bit overprotective ... :-)

I also just can't figure out why anyone would leave any person out in the cold. Just disgusting.

E said...

Dave,

I'm sorry......truly. At a moment when I might have offered a cyber-word of support:

I got the anger, the rage, and the pissed off in your first post about this incident.

I somehow missed the trauma, the terror, the fear...perhaps they seeped in after the initial reaction faded away.

I also missed the shame, the blame, and the powerlessness that you later recognized.

I missed the opportunity to say that I'm sorry that you, who goes into the world with a generally competent, confident, and power-full personna, were left feeling less, and afraid.

Undoubtedly sharing will help - not only you, but those that hear (are you doing a training for the wheeltrans drivers?).

Not that this should "help" (but it may give you sarcastic fodder for the future)
On a much lighter note...a gentleman a friend provides support to while he is in the community refers to the local adapted transportation company as "The department of dubious destinations". As he has challenges on the autism spectrum which often prevent him from spontaneious verbalization and independent motivation of movement, it is amazing that he is able to retain his sense of humor, and a very good thing that a support system is in place to insure that he is not long left in what the driver believes to be the right place - even when it is not! : )

Anonymous said...

After all the other serious comments, this one may sound silly. But you said you appreciate them all. So... just wanted to tell you I took the time to look up Toronto on a map. I live in FL, US and didn't know where it was other than Canada. And I was trying to look up weather history. I was trying to figure out if you were talking Fahrenheit or Celsius. Not that the situation wouldn't have been serious either way! But it just doesn't get that cold where I live, and it's hard for me to envision. I wouldn't put anyone out in the conditions you described. Is that just considered normal weather for you? OK, now my mind is taking a huge leap. It reminds me of Hurricane Katrina - in hurricane country there is a real mind set drilled into us that everyone should be able to take care of themselves for the 1st 3 days. It was expected that people would have their own way to evacuate. And that just wasn't reality.
Maybe your driver was too used to being in a tough guy Canada mode? Har Har our blood is thick and we swim with the polar bears? OK, my mind has terrible stereotypes of Canada, but my image of California is worse!

goddess-amy said...

What is it about the pain and fears of those with disabilities that make them seem less important than the pain and fears of other 'real' people?

I think it's because non-disabled people just don't know what it's like. Things are easy for them and they can't imagine or don't realise what its like for someone who has difficulty with some things. Their viewpoints are so different.

Andrea Shettle, MSW said...

goddess Amy said: "I think it's because non-disabled people just don't know what it's like. Things are easy for them and they can't imagine or don't realise what its like for someone who has difficulty with some things. Their viewpoints are so different."

I think another part of this issue is that some people just have a lot of trouble understanding anything that they either haven't experienced or haven't seen in a really tangible way. If they SEE someone struggling to walk, then it might be "real" to them that the person needs walking-related accommodations. But if the person does not have a clearly *visible* problem walking then it may be much harder to grasp that the person may still have trouble standing for long periods of time or may be in a great deal of pain that just isn't visible. Or if a person has physiological differences in how their body responds to the cold--well, all those things cannot actually be SEEN to the naked eye, thus it's invisible, thus (for some people) it just can't exist.

Anonymous said...

Dave,
I feel your pain in this incident. As a very competent person I always felt very able to advocate for myself and my children. That was until our son who has a disability became unsafe in our home and we needed help. Unfortunately,I found that being competent and capable don't always mean much when it comes to depending on other people.

Jazz said...

Oh, Dave. I am new to reading your blog, and am going through all postings from the beginning to the current date. What a gift.

This one really upset me. You don't need me to tell you how to feel about this, even though I am both shocked and saddened that this kind of stuff happens, and that I concur it is serious- you are so right.

I'm sad that this has left a scar. Not only did you have to suffer at the time, but long afterwards. Giving voice to your experience has really left me thinking about decency and how we can do better.

There are so many ways that people abuse those that they see as powerless and less worthy of respect and care. As though we all have a number on our foreheads, and others use it to figure out our worth and how they should be treating us. So wrong. So shocking. So inhumane.

It fuels a deep anger in me, probably because it reminds me of my own experiences at the hands of doctors (suffering from a complex and invisible pain condition which affects all of my muscles, tendons, nerves, etc. and causes cognitive issues, amongst a host of other life-altering physical issues).

I don't understand taking advantage of others who are vulnerable- those who mistreat others seem to be missing something in their soul...

Thank you so much for sharing yourself so openly and for touching others with your insight and wisdom.