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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