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HELLO THERE!
WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.
--- HEDDWCH

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Monday, 20 July 2009

Mandy the Motatorious Messiah

You’ll know Mandy by now from her keenly observed comments on PPlog. Mandy is a comparative youngster who lives in the Luton area. She’s my soul mate. We met several years back now on the internet discussion forum for NIMHE East (we’ve never, as yet, met person to person). She was then one of the most active members of the NIMHE East Experts by Experience group and her acute perceptions of the obscure dim corners of mental health’s distortions had an immediate impact on me. My respect and admiration for her soared.

Mandy is certainly an ‘Expert by Experience’ and her expertise was put to good use early this year in a broadcast interview in the BBC Radio 4 programme, “All in the Mind.” She is both a user and a carer and her experience includes a welter of heavy buffeting from so called professionals. Here is one of her accounts of a recent ‘experience.’


What makes you happy? ... it's some kind of sick joke
Ha! Ha!

Am laughing before I even start this posting and that is due to the irony of it all.

The title was prompted by a question posed to me yesterday and followed on from another meeting about Dad's care. This one was a CPA review but they all seem the same, with the end results being not much of any use.

I lost it. I don't know exactly why I lost it when I did but I really lost it. It wasn't long into the meeting. Dad was sitting there, looking all withered and small and saying how nothing has changed and he still feels so bad and he was crying.

Prior to the meeting, I had intented to keep schtum and that is because only a week ago Dad was saying how he felt bullied into things (not quite sure what things because he doesn't do much???)....I didn't want to be part of any bullying.

However, I think it was the futility of it all. Sitting there, with Dad and 5 MH/Social Care professionals, and the shrink turned to me and said "have you anything to say?". At that point I burst into tears and couldn't stop crying so I excused myself and left the room.

The crying continued. I tried to gather myself. I tried to think what I could contribute, what point to any of it and I couldn't think of anything and then more crying.

A couple of members of staff passed me and asked if I was okay. I said "Yes". What point saying "No"? There is sometimes nothing that can be done when what could be done hasn't been done already.

I remember staring out a window and seeing a tree swaying in the wind and thinking "If only I was like a tree" but I am not. I can't bend with the winds and change direction as maybe I should...in order to protect my foundation, stop the boughs breaking. I don't know how and anyway, I am a human being and a seriously compromised one at that.

So the meeting ended and Dad was ushered out by staff. First thing that happens is he comes up and tells me he has agreed to have ECT and I cry again. He asks if I am upset by that. It is way beyond that for me. I say I can't talk about it. His support worker says that is something Dad and me can discuss at home. I don't want to discuss it at home. I had to get away so I made apologies for not being able to contain myself and went outside.

This is where the title becomes more relevant....His social worker (whom had told us previously she had signed Dad off but turned up at the meeting) came outside and offered me a ciggy. I duly took it and then she asked me why my heart is breaking and what would make me happy. I couldn't answer...I didn't know what to say.

She asked if winning the lottery or going on a world cruise would make me happy.?????????????????

I said all I wanted was peace and quiet. She then said that if I wasn't careful it would be me having a breakdown!!!! If I wasn't careful!!! How can I be any more careful? Perhaps if services cared more Dad would be getting better support and I would be able to be a bit more carefree rather than careful. I have had it up to here (points to ceiling) with being careful!!!

I think she clocked that the pep talk wasn't having desired effect and headed off.

Fekk knows how much later I went back and found Dad sitting with his support worker. I asked if they could ring a taxi and Dad told me he loved me. I told him I loved him.

I cried all the way home in the taxi. I know that didn't do Dad any favours but I couldn't stop myself.

As we got out of the car, the taxi driver, whom I know from previous taxi trips, commented that I didn't seem happy today. 10 out of 10 for observation! I said that it wasn't my best day and he told me to try to be happy. I said "Thanks"..another irrelevant comment that allowed me to escape without more compromise.

Dad stayed with me for a few hours. We were mostly quiet. We went for a walk to the local shops (I needed movement and nicotine)...Dad needed groceries.

He did tell me that they have put him on a waiting list for more sheltered accommodation. That sums up what our lives have become. His life particularly, with me entrenched in it somewhere.

He asked me if I was happy with that. No! I am not happy with that (how could I be when he is so fucking miserable and it is all relentless?) but I said that it is about what makes him comfortable and if he is comfortable then I am okay with that. Just like the ECT. Whatever he thinks, or hopes, can help him is okay with me.

As a friend said "There can be no such thing as responsiblity when there is no power" and that is how it is.

And what would actually make me happier (cos I think happiness is transient rather than a static state of being) is for Dad to be safe, to have some kind of social interaction (outside of me and MH professionals)that suits him, some sense of value in himself and for me to be able to breath without worrying so much about him. It doesn't seem much to ask for but it is.

Happiness my arse!

Salutations Mandy. My heart goes out to you along with my gratitude that you are one of the few people with consistent ethics and standards who are making a difference, however imperceptibly.



1 comment:

Mandy said...

Thank you Mike

Consistent ethics and standards. Some..maybe many...would say I am 'obstructive and annoying'.

I find it really hard to believe that so few of us, with blogs or anything that can get word out, are speaking out about what is happening. Okay so maybe some people don't need care and support...maybe some have families who provide that from within..and some are hardy enough to get on with it and don't see that others can't.

I have this recurring Darwinian nightmare where the fittest kill off the weakest and others
pretend it isn't happening. I don't think we are that far away from such happenings...when the second layer (Jo Public) of the more able have their backs against the wall what else would they do but fight for themselves?

And you know I am most probably eroding whatever fight I have by dosing myself up with lorazepam but to see the bitter truth and realise I am totally helpless against it, really is too much to bare.

There is only so much fight in any one person. I wish I could send out a rallying cry but my voice is lost in the cries of the many who are still unheard and uncared for.

Bweebideebobbida

Bweebideebobbida
The Tough Tenor (when I could walk)!

In a Mellotone

In a Mellotone
Ah sweet Youffff