Sunday, January 04, 2009

About Abuse, About Much More

My email has been very active, this letter arrived about Life Lessons which I'd written about what I'd learned from being left in the cold. I liked what was said and wrote to ask permission to publish it and, like Janet yesterday, Heather gave permission. (All this has given me an idea for something new to do with Chewing the Fat, if you have something you'd like to say about the disability experience but do not have your own blog please submit something to my email. I'll try to do a guest post once a month.) I thank both Janet and Heather, there is such deep honestly in both letters and they each gave me a glimpse into private lives and private thoughts. I learned from them. Please welcome Heather:

Hi Dave

Thanks so much for today's post...as always you manage to articulate the things which i kind of perceive but can't quite say but when I read what you've written I think 'Aha! I KNOW that!'

Your post struck several chords with me today...but the most significant one has been the issue of thinking that you know about something and have a good conceptual understanding of it...and then having the felt, real life experience of it...I think that you talk about understanding things in new ways...

For the past 9 months I've been in love with a man who has significant physical disabilities and requires a great deal of practical support to live the very full, active and contributing life he lives. He is a lovely man and the love of my life...it was never the script I imagined for my life but here we are...9 months down the track and for the most part we are very happy.

I have about 17 years of experience of supporting adults with intellectual disabilities and for the past 5 or so years have worked freelance as a trainer/consultant in this field...I think I know a bit about support...I think I know what good support looks like...I thought I understood something about the impact that good or bad support could have on the lives of the people being supported but until I lived with my partner and had to negotiate some of his support then I really had no idea.

All of the things you talk about are negotiated by him on a daily basis...terror and fear of reprisals...he NEEDS these guys if he's to get up out of bed in the morning or get to bed at night...if they get pissed at him he has the very real fear, not of being hit or manhandled, but of someone not doing their job carefully enough or being badly placed in his chair or having the urodome badly positioned and the tube to his legbag sticking out of the leg of his trousers...fear of lots of small discomforts and indignities...fear of people not being accommodating or flexible...but real fear nonetheless.

The notion of misplaced empathy...I won't bore you with the incident but we had a couple of care workers put an ice cube tray in the shape of a penis in our freezer in an attempt to get me to 'lighten up'...I didn't find it funny and actually felt intimidated by it (what would be next? A vibrator for Christmas?)...it created a great deal of trouble, anxiety and stress in our home...

As their employer, I wanted my partner to 'do something about it'...he didn't want to get anyone into trouble ( the fact that he had told people not to do it, that I wouldn't like it, was completely overlooked by people)...My experience as a worker and a trainer gave me all sorts of theories and ideas about what to do...but his sense of shame, worthlessness and self blame coincided with his misplaced empathy...and so he and I weathered the storm but I reckon we'll fight this particular battle again...

Not taking abuse seriously...this comes from not taking THE PERSON seriously! A number of people have had to think again about my partner in the light of our relationship. There's a load of teasing and sexual banter goes on around him (and to some extent he participates in that)...people carry out very intimate care tasks for him and so, rather than just be straight forward and matter of fact about it the culture that has grown up around him (and some of these carers have been with him for 17 years) is one of innuendo, and tease...the women dress provocatively...they share the details of their relationships with him and share gynaecological secrets with him...they bring him presents of stickers declaring "awesome lover lives here"... But when he actually had a relationship...a real grown up relationship...they didn't know what to do...

I know that I am no catch...I'm not an attractive woman... I'm fat...middle aged...dipped in the ugly pool...and with the disabled man. We have had looks ... giggles ... whispers ... embarrassment ... outright disbelief...and on one famous occasion, someone who actually gagged at the idea of us being together...being lovers and in love. We are the double whammy...disabled and fat...and it is hard for people to take our relationship seriously...to take US seriously!! It doesn't matter that he has a huge and generous heart... that his brain is the size of a planet...that he is funny and sharp and cluey about things...that he's a computer whizz and has a quirky side...they just see disabled man and fat woman...a couple of caricatures...

This happens around us, in our home and is his day to day experience of life...I'm just seeing it and like you, i'm having to revise the notes...but how do I do that? I don't want my precious and private relationship to become a training tool...but there is stuff happening that i'd like to talk about...What do I say?

But the bigger problem is that this is leading me to despair...neither he nor I are shrinking violets but this is happening to us...and for the reasons you've articulated we are silenced...for different reasons...for my partner, this is for the reasons you outlined...for me, it's because he doesn't want me to do or say anything...he'll handle it and anyway...it's not that bad... if it's happening at this level to us what's going on in other places where people can't speak up...

I feel heart broken that my lovely boy is treated like this and allows it to happen...some days I think it's all fine and things are as good as they can be. Other days I just want to get a baseball bat and beat the shit out of the last person who did not listen when he gave an instruction or who looked a look...or didn't fasten a button...or got food all over his face and didn't wipe it properly or...or...or...

I used to think that we could change the world...I'm less sure now or more overwhelmed by the task...

Anyway..this has been a bit of a ramble...

Congratulations if you've managed to read so far!!

warmest regards

Heather

11 comments:

lisa said...

Wow Heather! Thank you for letting us know something about your life. I can't even imagine how difficult that must be dealing with caregivers on a daily basis as part and parcel of your life with someone else. You have really made me think.

Lisa

Terri said...

Wheelchair Dancer has also written a post about carers that really made me think...

http://cripwheels.blogspot.com/2008/12/oh-racial-politics-of-care.html

Much food for thought.

Anonymous said...

I will admit to being in tears. How common is this experience? I thought we had moved on from such experience when we ended the institution. Niave, niave, niave.

We should draw up a job description for staff so they are clear what their role is - I know it is not that clear cut but the barriers need to be clearer.

Belinda said...

Heather,
A dear friend gave me the book, "Man's Search for Meaning," by Viktor Frankl for Christmas and I have been devouring it. There is a quote in the book by Nietzsche and it is all that I can think of to give in response to your description of life as it is for you and your beloved one:
"He who has a 'why' to live for can bear with almost any 'how.'"
I celebrate the love that you have found in one another. You have a "Why." The "How" has yet to be got through; I pray that you find the "How."

rickismom said...

Wow Heather! I am sorry that you have to go through asll this. Are carers ussually so bad? Aren't they employees????!!?

workin'' hard said...

I read this blog quite often and am inspired at times to do my job as a carer in a different hopefully more effective way. Often I think this blog is making it an up hill battle with the carer-bashing that goes on. I think it is crappy and annoying when someone doesn't do their job and perhaps it is because there is a feeling that nothing is ever right. It is frustrating that there isn't a wonderful story about people who do their jobs and have beautiful relationships with the people they care for. Sometimes an incident is snowballed because something isn't said like the case of Heather. Just a simple 'hey enough sex talk, lets just get this done' can be quite effective. Perhaps the carer isn't aware at all that this isn't what you want. I need help as a carer. I need feedback. I need clarity. This is not a cut and dry field of work and lines are blurry. I am so lucky to have a job I love and get paid to do it. I do care and I get paid. I need support and understanding to do my job well.

Glee said...

I think for a start here we must stop calling paid workers "carers". Only a person who loves you and supports you because of that personal relationship, perhaps with the help of a small Carer Pension - only they deserve the term "Carer". People who are paid as a job to support a person with a disability (aged or children) are called variously "support workers" "personal assistants" or such.

When we bestow the term "carer" on a support worker they sometimes put halos on themselves and take credit for actually being "caring" because the word is in their job title. Many many support workers don't care much, some are abusive, and they are not actually required to "care". Of course it is very nice if they do care. They are required to do their job efficiently, respectfully, honestly and to the best of their ability and that is all. I do acknowledge that working closely with people is not always easy and may require particular skills and talents.

Please can we reserve the term "Carer" for the people who support us from a truly Caring position. Cos they want to.

And we do need different terms for carers and paid workers purely to differentiate between the two in the industry. I get constantly confused as I think people are talking about their carer when they actually talking about their paid worker and sometimes vice versa.

cheers
Glee

I've been in hospital for 3 weeks so hence my scarceness lately - good to be home and catching up on the blogs. I'm on the mend and will write about it on my blog soon. Few horror stories there!!

Caring support worker said...

Hi
I get paid to do my job. I care about the people I work for. I often go above and beyond my job description because I CARE.
It is frustrating for me to hear of people who have a voice not reporting about abuse. I work with people who are not able to tell of things like abuse if it happens. Please report abuse if you are aware of it or vicitm of it. Remember some people that can't are depending on you!

Heather said...

Thanks everyone for your comments. It's always interesting to read what people think.
My apologies if it felt like I was giving carers a hard time...that wasn't my specific intention when I wrote to Dave. I really wrote in response to his reflections and insights after the event and his sense of feeling that he knew about something but having to review that in the light of his experience. His post provoked that realisation in me...I thought I knew about something but was having to review that in the light of my experience and what I observed was part of my partners' experience. As a trainer and consultant in this work I need to go back to my notes and think again about some of the stuff I thought I knew.
I am sorry if I whinged about it...our life is not unremitting gloom and trial after trial...we love each other...we love being together...we have some great friends and good times...there are lots of laughs and there are wonderful quiet moments when there is only us and nothing else matters. I love our life together.
But the stuff I wrote about is also true and we have to negotiate that on a daily basis.
The causes of the situation are complex and have their roots in the meaning that our society gives to 'difference' (negative; less than; not as good as) and our response to that (better than; discomfort; unease; disregard) My analysis of our current inability to deal with some of these situations is that we are experiencing what Dave described in his post...fear of reprisals...misplaced empathy...a sense of worthlessness, shame and self doubt and a failure on the part of our society to take the abuse of people with disabilities seriously...
Workin' Hard, I'm sorry but I think it is naive to suggest that a simple "Hey, cut the sex talk..." would resolve this...the difficulty is not with the sex talk but rather with the underlying attitude that allows the words to be uttered in the first place...
"Not doing your job" is an interesting response to "the feeling that nothing is ever right"...and I have to assure you that people in our lives are pretty clear about how I feel about some of the stuff that goes on...but I'm not in charge here...my partner is...and, for all the reasons Dave expressed, he can't complain (and temperamentally...he's a peacemaker...) For my part, I am trying to be the one person in his life who hears what he says and acts on that. So I'm not going over his head or behind his back...I'm trying to keep my tongue civil and to find ways of saying hard things in a way that people can hear them...don't always manage that but I am trying.
I want to ask the people who do the work of caring and supporting to stop being so two dimensional. Stop thinking about this as 'I'm being nice to them so they should appreciate me and understand how
hard my job is' and really strive to understand the complexity of what you do; the power you have over people; the contract that exists between you and the person (you get paid for what you do...THEY pay you!!!) and the fantastic opportunity you have to make a difference in someone's day to day experience of life...to be of service to another human being...
People are searching for that kind of meaning to their work and life...
So...my apologies for the gloom of the post and for any hurt or offence caused...and I'm sorry too if I've gone on and on and on...you've got to feel sorry for that poor old man of mine!!
kind regards
H

Anonymous said...

As carers we need to constantly remind ourselves of the word "dignity". All people deserve dignified, respectful treatment. Being crass, sarcastic, teasing, making inappropriate comments, etc. etc. do not, in my mind, qualify as dignified. I have a wicked sense of humour and can be as irreverant as ever. BUT NOT AT WORK. Not around disabled people. There is a time and a place for everything. I say fire the buggers and hire new ones! P.S. I work with some rude, crass buggers and I truly believe that they feel "pumped up" about having some power over disabled people. Pitiful.
Max.

Anonymous said...

I was a "carer" and in my mind I did a great job. Heck, someone put me in charge of six disabled children's lives. I wasn't even thirty years old and had no children of my own. I was good, I was caring. I cared deeply for these children. There welfare was my life.But, now that I am a mom to a young man who relies on care givers to keep him safe and give him a quality if life, the job I did was not enough. I did not give those children the lives I want for my son.
My son deserves to not live by someone else's schedule. He deserves to do what he wants and when he wants. He should be able to get up each day and have assistance in deciding what HE wants to do each day-not what the "carer" thinks would be good/fun/interesting.
He deserves to do what he enjoys, not what the carer feels like.
I am trying to write a document for his carers about what we, his family, want for him and am struggling to find the words.
I think the best carers are those who take the discussions here and question themselves on how they can become even better carers.