Thursday, September 17, 2009

Dot Dot Dash

I almost never ever do it.

Actually, I never do it.


I'm not often even tempted.

One of the nurses who came into my home started out wonderfully. She immediately introduced herself which set her apart from all the others. She double checked information about me, with me. OK, I was feeling pretty good about the whole thing. It was only later that something really disturbing happened.

Feeling that she was only getting a one sided picture of who I am, how I live in my body and my general health status because all we talked about was the problem that she was there to assist with, I said, 'But overall you need to know that I am quite healthy.'

She looked at me and gave me this little pathetic like, patronizing smile that I think was meant to say, 'That's it make the best of a horrible situation.' Her expression was so obviously disbelieving that I found myself stumbling to quickly say, 'No, really, overall I'm pretty healthy. I go to work every day, I miss very few days a year.'

She said, and I'm quoting exactly here, 'Oh, you work?'

Now this got to me because I'm on the evening appointment list because I go to work. So I told her that I did. Then I told her my title and she said, 'Um, hum.' Like I'd told her that I was Brad Pitt's body double - those asscheeks in 12 monkeys ... mine. Inside I got that horrible feeling like I've had all my life, that I'm a big old fraud, that my acheivements are worthless, that my accomplishments mean nothing. It became really important to me that she SEE me.

Really see me.

So when she was in the front room and filling out paperwork. I did what I never do. Ever. I got Joe to talk with me about upcoming lectures. Sheesh, I even mentioned the upcoming date for being inducted into the Canadian Disability Hall of Fame. She looked up at me and I finally saw that she had dismissed the idea that I could be living a life of love, of value of contribution.

It shouldn't have mattered to me.

But it did.

How do people who don't value the person behind a disability, a disease, an ailment, get into healthcare?

This woman wasn't a spring chicken, she'd been around the block, hadn't she had even one moment of enlightenment?

I've decided to try and teach my heart to beat in morse code so that the next time someone listens ... a message will pound out strongly ...

Here beats the heart of a fellow human being.


OhWheely . . said...

Hi Dave
I've had similar comments when I've mentioned work and not just to carers. I get the impression that I'm being humoured. That they think I'm making it up or dillusional.
I feel like wearing a uniform all the time (if I had one) just to make a point and prove the job is real.
I decided it's their problem not mine. I have value in my eyes and the eyes of people who know me well. At the end of the day they are the only ones whose opinion really matters to me anyway.
I think you are an amazing human being for what it's worth.

Heike said...

Of course it bloody well matters. You did the right thing. For all of us.

wendy said...

I'm so sorry you found yourself faced with that degree of closed mindedness. It's so hard to let go of caring what others think or believe about us. May I suggest displaying awards and letters of thanks in a prominent way for just such occassions? It sounds like you could stand to look at them a little more often too! ;-)

Tamara said...

I don't understand either - why would someone with those kind of attitudes go into nursing? I have the same question about many of the special ed teachers I deal with. I just don't get it.

But - I really wish I could give you some magic power so that you wouldn't let them shrink your opinion of yourself.

Even if you didn't contribute to society as hugely as you do, you, Dave, would still be a valuable human being.

Maybe there was a reason though. Maybe the organization she works for needs an employee training session on how to treat patients with respect, not pity. I bet you could put together a good workshop!

Anonymous said...

In some ways Dave there is progress!
At least she introduced herself...unlike others you have been dealing with recently!
That said the point you raise is so true!
You just have to keep working to change the sterotype view.....and no better person than yourself to do that Dave!
Keep the faith my friend....
love Linda ( LinMac)

Piuku said...

Hi Dave!
I'm a mother of a little 8 months old boy from finland. Verne has Down's syndrome. I've been reading your blog for a while now. And this post really struk me: how hard it is really to see the people, the man, the child, the succesfull Human Being behind the disability?!?! Honestly, i'm terrified!

Eaven now, as my son is so little, we see these attitudes - down's comes first, then the kid.

I am (allso :D not "just a mum") an occupational therapist and i'v been working with all kinds of people, and the first things that i want to know about my clients are that who they really are, what they like and what do they want to happen in life, not the "sickness or syndrome" - because all that values, is who is the person behind (or in front :D ) of it all!!!!!

I wish you all the best and you can count on it, that i'll be reading (commenting in english is a little hard forme beacuase of this "motherhood-related-dementia" :D )

Anonymous said...

I had a similar experience and it repeated itself enough times that I finally insisted meetng with the CEO. He called this person in and I outlined before her in front of her boss my profession and credentials and that I would never allow her to work in the industry. She tried to make excuses, but I countered with examples. Don't know if it did much in the long run for her shallow mindedness, but I felt satisfied. Call the CEO for the sake of others because, yes! It is offensive and won't stop unless we stop it.

Kristin said...

I hope that wake up call keeps her from dismissing and minimizing another person. I'm sorry you had that experience.

Brad said...

I wish we neve had to deal with that attitude at all. I had to grow up with a father that didn't seem to like any sort of success I had because I was 'disabled' and should not be able to do that.
One distinct memory was when I was in grade two, my oldest brother was in grade 7. I did his geometry homework for him because he didn't want to do it, and I didn't want to wash dishes. So we swapped. He showed me how to do two, and I did the rest. We got 28/30 right. And one of the ones he showed me was wrong. He was getting praise from my parents for doing so well, and my brother being the honest guy he was fessed up and said that I had done it. My mother's face was one of joy, my father's, anger. I vividly remember his face.
I used to get lectures from my father on how I was not handicapped and I should never think of myself as anything but handicapped, but then 30 minutes later into the lecture (seriously, I used to get hour long lectures from my father all the time), he'd reverse his course and say I should never consider myself handicapped. My father never came to take me to the doctors, not once. The only time he did was because I was recovering from surgery when I was 12, and he basically had to come then.
As a child how do you deal with that? In talking with my mother at an early age I knew it wasn't me, but my father's inability to accept it, yet I'm 38 years old and I still have issues about this. I can never talk with my father about it because he'd just deny it, my mother agrees with that too.
So Dave, I guess that is a question for you. What do you tell one parent how to deal with the other parent who just refuses to accept the disabled child? What advice would you have given my mother to help deal with my father?

Just curious. :)

Gone Fishing said...

Maybe its old age but I now relish meetings with such people.

I smile sweetly and tolerantly at them and they in turn form the most diabolical opinions and reports of my life.

While all the time at the back of my mind I am thinking But I am the Supermodel! (I get the occasional photographic modeling job, I do not work because I have been assessed into dire employment oblivion, a risk to have in any workplace even as a volunteer apparently.

I have never been able to resolve why People will go to extreme lengths to make people with different abilities fit into boxes of being incapable of anything or not trying to do anything, while it simply aint real

Gone Fishing said...

Further small note, my Wife is a Teacher Aide who over the years (15 or so)has worked with many, many Children most of whom become "pseudo members" of our family.

"Mum" has worked hard to gain qualifications in many fields and is now "in demand" to work with Autistic Children.
If we have learned one thing from all that it is NEVER UNDERESTIMATE ANYBODY!

Just yesterday there was a meeting during which the relevance of "Professional Development" was considered and seemingly that horrible excuse "Experience" being better than "Learning" came up.

Experience it seems allows one to make the same mistakes time and again without learning from them.

Andrea S. said...

This reminds me of a story I read once on a disability chat board.

One of the participants in this chat board happens to have a "carer" who works for her part of the week. This carer happened to mention that she also has this other client who had cerebral palsy. Out of curiosity, she asked her carer what type of cerebral palsy the other client had. The carer kept insisting that the client she was talking about was in a "vegetative state" by which she apparently meant he was in bed most of the time, and did not talk. And apparently the carer assumed he could not think at all.

The client she was telling this to tried to educate the carer about cerebral palsy. She even showed her an on-line video of a stand up comedian who happened to have a similar type of cerebral palsy as the other client had. The carer seemed to become increasingly confused and upset. She finally blurted out that she really shouldn't discuss her other clients for confidentiality reasons and refused to listen to any more education.

I don't understand how people can go into a profession in which they are surrounded by people with disabilities all day every day and remain so closed minded that they actually refuse to take opportunities for learning more about disabilities when they are offered.

(Ok, yes, there are genuine confidentiality issues in that she maybe shouldn't have mentioned the other client in the first place. But after that, from what I gather most of the talking ended up on the client's side where she was giving general education about that condition. Surely no confidentiality issues in listening to very general discussion of this nature, yes?)

Dave Hingsburger said...

Brad, Man, that's a huge question, give me time to think.

Belinda said...

Obviously this woman needs some education and enlightenment and she was in just the right home to receive it. I don't think that showing credentials should be necessary to be treated as a human being though. It shouldn't matter whether a person has a Phd or no letters to their name. All people deserve respect and freedom from negative stereotypes. We all deserve to be "discovered" for who we are and not pegged from the outset by some outer set of attributes.

Brad said...


You don't have to answer if its too time consuming for you. I thought that might have been something you had spoken on, or heard spoken on before.

I actually need to talk with my mother about this too. She is a counselor and has done a fair amount of speaking as well. She has spoken about being a parent raising a disabled child, but other than that I don't know what else she has mentioned about my situation.

I think its time to give her a call. :)

Andrea S. said...

I do think Brad poses a fascinating question. If there is ever an answer to share, whether from Dave, or from Brad's mother, or from some guest blogger or whomever, I'd be interested.

Brad said...

Dave & Andrea,

I talked with my mother and she said she's going to write something up in a few days. We actually had a really good talk and it should be interesting to see what she comes up with. :)

But hopefully she'll have something soon. Its her birthday in 2 days too, so it may take an extra bit of time.

Tina said...

I am very interested in Brad's question as I have a brother and sister who can't accept my deafness and treat me like I'm not even part of the family, like I'm stupid, and don't have a right to voice an opinion. My sister is a nurse. I'm completely puzzled at their attitudes which they have held for almost 40 years. I am more highly qualified than both of them so Brad's comments rang very true. No idea how to deal with this attitude as they won't listen to me.

Brad said...


If you click my name to hit my blog "kick me out soon', you'll see the answer my mother sent me. I don't know if it will help you with your siblings, but maybe it will.

Anonymous said...

I work with kids with disabilities of varying kinds- it is infuriating when I find out my COLEAGUES dismiss the children I work with - Oh he can't talk, Oh he can't be very smart, Oh it's just a scratch- when there is a rubmark from the wheelchair. I just freaking hate it. He can talk, he can HEAR when you say it in front of him, and he is a precious darling who needs to be protected from people like you.....Thats what I want to scream.

I don't know- I am just so sad when I read stuff like this.