Hello Simon
Gosh! I cannot begin to imagine what a pain in the arse it must be to have
to search so hard and wide to find a sensible PA. I hope that there might
be some inspiring stories out there about brilliant PAs too so we can
maintain faith in humanity.
What I actually wanted to bring attention to, is that all of us, regardless
of disability may need to think of how we would like to be assisted in our
dotage (old age). I just can't imagine having to live in a 'home' where
no-one cares about my miserable existence (imposed not innate) and where
people are more than happy to tell others that I am happy and that 'this is
my home' and other guilt-placating platitudes.
I intend to talk to my family about what I want and dammit...I want to be
treated like a God! I want a PA but I want security cameras in every room
and I want comfort, relief from distress and pain and a damned good
entertainment system. This is only partly tongue in cheek. I dread the
thought of being under the control of someone that does not have an
investment in my comfort and I wouldn't want my family to do it. I mean it
when I say that I want security cameras. Call me cynical but I've seen the
abuse.
Anyway, I just wanted to make the point that we *all* need to think about
our future and our care in the future should we live to require constant
support.
Laurence Bathurst
University of Sydney
School of Occupation and Leisure Sciences
PO Box 170
Lidcombe NSW 1825
Ph: 61 2 9351 9509
Fax: 61 2 9351 9166
Home Ph: 61 2 9818 2050
----- Original Message -----
From: "politano" <[log in to unmask]>
To: "Simon Stevens" <[log in to unmask]>; "Andrew Holman"
<[log in to unmask]>; "Direct Action Newtork"
<[log in to unmask]>; "Disability Awareness"
<[log in to unmask]>; "Disability Research"
<[log in to unmask]>; "Jane Campbell"
<[log in to unmask]>; "Patsy Holland"
<[log in to unmask]>
Sent: Tuesday, September 19, 2000 1:47 AM
Subject: "Simon Stevens":National crisis regarding PA problems
Simon,
As you know. You are not alone in your frustration regarding this topic.
There is a group called ACOLUG (augmentative communication on-line users
group)who frequently discuss problems such as PA issues as well as other
issues important to people who "speak a bit different". To join their
listserv go to:
http://www.temple.edu/inst_disabilities/acolug/tacolug.html
I am also aware that the topic for their annual PECs conference in Pittsburg
this year is issues related to PAs. I know the conference is in August
2001,
but I would join the listsev and talk to the group to get more info. What a
great opportunity to begin to address this national problem.
I hope you find a good PA soon.
pat politano
>===== Original Message From "Simon Stevens" <[log in to unmask]> =====
>Square One
>by Simon Stevens
>
>Just two weeks ago I rang my friend up to tell her the good news. After 6
>months of searching for personal assistants, I had finally found 2 PAs
which
>were just want I needed, what could go wrong? They made it throw the
>interview progress, and with my own game of 20 questions and the fact I had
>connected the hot seat to 20000 volts of energy, I made sure that only the
>best made it!
>
>If two weeks is long in politicals, it can be an enternity in employing
>people. My first PA was due on start the Monday just gone. When my support
>worker rang me the Friday before to stay she had not been able to contact
>him. I had a good idea he was not coming. So trying to ring him all weekend
>and all Monday, I had no choice but to keep him the benefit of the doubt.
>Five days later, I still have been unable to contact him.. I just don't
>quite think he wants the job. it would to nice if he told me!
>
>Oh well, one gone but at least I still got Peter (not real name), he is
>eager and he won't let me down, will he? I must really get my head
examined!
>Peter was physical double my age, I am 26, but he seem about a fifth of my
>age (I am being nice here!). I can understand how mothers feel when their
>children have not learnt the meaning of quiet. I could bore you with the
>long list of small but annoying stuff he did. To cut the story short, it
was
>not exactly right for me.
>
>After doing some work for me, Monday, Thursday and Friday, today was he big
>day to prove his worth. We have got married and I have showed him some of
>the ropes, including a 40 pages guide on myself. Today was our honeymoon
>when he will prove he could do no wrong. I except the first few weeks to
>have mistakes and differences, but with the right attitude I am flexible, I
>can handle it.
>
>He arrived at 10am today, by 11.10, just 70 minutes later, he was not just
>sacked, but had been paid off and paperwork had been signed and delivered.
>About 30 minutes before he left I heard myself make a noise like a
>distressed dolphin and then have a strong desire to curl up on my bed and
>have a good cry. Okay, it has been a stressful weak but when half the world
>refuses to talk to you because you speak a bit different, frustration is
>something I would hope I manage very week and that murder charge last year
>was dropped in the end!!! (I am joking!) This was a man who had turned
every
>part of my life into a game, he had turned my PA guide into a scrap book,
it
>looked like a kid's project on their favourite hero. My PA guide is just
>meant to be a guidelines of what should happen in a ideal situation. in my
>life, a normal situation has never happened. My PA guide is there as
>background, not rope to tie me up in. In the shower, I heard him bang my
>kitchen about looking for washing powder. I just thought I employed PAs to
>help me, perhaps I got it wrong and I pay people for them to be taught
>common sense and councelled on their problems, and oh year, and for me to
be
>abused by perverts.
>
>The crunch occurs after the shower. He tried to cover me in powder like a
>piece of dough waiting to be rolled out. I had had enough to being powdered
>and had enough on me to fill a ocean already. He tried to stop me from
>leaving the bathroom saying he had to do it properly. I said `no, you do
>what I want, not what you what?' To this, my whinned like a child but gave
>in.
>
>On arriving to my bedroom, I saw a sweatshirt and a jumper on my bed which
I
>believe he expected me both to you. I told if to put the jumper away and so
>he tried to put both items away. This is the point when I reacted with that
>dolphin noise! Frustration was not the word for it. To this point, I saw
>Peter suddenly click that maybe he was not doing it quite right. I then
>asked him to get my some causal trousers, something you would wear shopping
>on a Saturday, so he decided he would pull out the best pair of trousers I
>had, to which he seems quite proud! My head is spinning by now and I was
>restraining from tears.
>
>I then asked to get ANY t-shirt out. There were all very good quality after
>a recent sort out so I did not care, I leave it up to my PAs to get out my
>clothes appropriate to what information I have given them on the days
>activities and roughly what I wish to wear. He then asked me if I had a
>coventry university t-shirt and if I didn't have one how nice it would be
to
>have one!
>
>By this time, I was so close to curling up on my bed and crying my self to
>sleep than it was at that point I told him enough was enough. I seemed to
>agree and 30 minutes, my new PA suddenly because my ex-PAs. While on paper,
>many of you probably think I over reacted, it is difficult to express the
>sheer pressure and extra work he put on me.
>
>Many people goes through boy or girl friends like hot dinners, I tend to do
>it with PAs. It is like marriage and it is
>divorce. I feel like Melany from Eastenders, married on New Years eve,
>divorced just the following day! I am easy going, I pay well so am I back
to
>square one
>
>Well, I do have the reassurance of it is just me, I have all the bad luck
>and no-one could possibly go through what I go through, could through? How
>wrong could I be? As I speak, two of my closest friends have having
simaliar
>problems.
>
>This is not just me, nor just them but I strongly believe this is a
national
>problem. Sorry, I meant national crisis. Over the last years, care agencies
>(soon to be careless agencies) and residential homes (soon to be regulated
>by the prison service) have abused `carers' for so long that no one wants
to
>work in care? Also, with Blair's wonderful economy, there is fewer jobs so
>who wants to work with the disabled? The whole sector need re-education.
>
>But people are aware of us, the Governments cares about disabled people and
>the disability movement is thjere to campaign for change, yeah? In reality,
>I feel neither the Government or what's left of the so-called disability
>movement is doing anything to relieve this issue!
>
>So in the meantime, a part of killing my social worker and bombing his
>office in protest, what else am I meant to do, drag people of the street!
>
>My life depends of personal assistants, NCIL has hailed it as the most
>liberating thing a disabled person it is and too true. But at the same
time,
>it is the most oppressive thing one can suffer because of the lack of
>support offered by Government in the big things. I get help with the
>paperwork etc. that's is great! But the system of PAs is oppressive and
sets
>me and others up to fail.
>
>Action needs to be taken now because things can even more serious! It is
>time to move and campaign for change. I just don't know what for yet but I
>know it can not continue like this.
>
>Simon Stevens
>[log in to unmask] <mailto:[log in to unmask]>
>
>
>
>Simon Stevens
>Enable Enterprises
>PO Box 1974, COVENTRY, CV3 1YF
>Tel: 070 209 21158
>Fax: 0870 133 2447
>Email: [log in to unmask]
>Web: www.enableenterprises.com
>
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