Hero Joy Nightingale

in memory of my friend Dr Caroline Fraser

This occasional diary has grown too big for one hit and is therefore being sensibly divided into itsier bits as follows:

20 October 1998 : diary-keeping and my friend Caroline, dead so dead
26 October 1998 : injustice

"I am gripped by fear. I have unleashed my ire and indignation at my LEA having exposed me to scepticism and having created a terrifying habituation by unjustly having failed to resource my disability needs for 5 long years........ my heart is faint and I sometimes just curl up in a ball of depression instead of being the spitting wild cat ball of fury indignation and energy I at this moment feel myself to be"

19 November 1998 : "It's the lack of music that sometimes hurts"
12 January 1999 : A Week In The Life Of Me
18 January 1999 : I plan to travel around the world
18 January 1999, continued : my disability

"I think there is quite a lot of curiosity about disability and what it's like. I have written elsewhere about my emotional attitudes and adjusting to frustration. I have had to write in some detail about my physical needs in order to stay with strangers on my forthcoming trip. I am pasting my e-mail up here so that you may understand some of my limitations."

20 April 1999 : Journey Into A New Being

"I have been asked and asked about my trip and I find it very difficult to respond. It was too big for a few sentences to delimit it. It had too profound an effect upon me for me to thrust it out in description easily."

22 April 1999 : e-mail interview continuing from A Week In The Life Of Me
30 April 1999 : "She declared me a Public Health Risk"
16 September 1999 : The AP Interview. Unlike the AP article which went out world-wide and seemed bland and uni-dimensional, this is a deal more loquacious and informative, self-paced by the e-mail format.
20 September 1999 : A single issue letter to Mr Dobson and Mr Prescott

"I have written to the Secretaries of State for Health and Local Government with a very simple question: why do parents of children with severe disabilities get charged for getting their child's needs met while those who have more simple and inexpensive needs get stuff free?"

2 January 2000 : I recently was paid for the first time, when I was asked to speak, using my personal experiences, at Scope's national conference on Barriers to Equality (Scope's one of the biggest disability organisations in the UK). The text of my speech is in FROM THE WINDOW, 6th Edition, Editor's View, but here you can read a copy of the handout.

"The NHS resources a clinical psychologist to help me with my fears but it's not an individual's problem really. It's not me that's mad, it's society that's unfair. And I find it sad that although I may be sufficiently cute crip to be a human interest story in the press, I can't kick them into campaign mode single-handed. I don't really want to spend my life in politics fighting for my rights or those of others. There are other things I want to do, but if I am prevented from doing them, I have no choice but to be a political animal."

1 April 2000 : an e-pal suggested I publish what I wrote him about my extraneous movements that prevent my accessing any current switching devices.

" This week I've had what I call hysty episodes when I start with a sort of nervous reaction to an unexpected sound and let out a high pitched nearly-giggle which I just then can't stop and it goes on like hysterical sobbing till I'm quite beside myself with embarrassment and fatigue. That's the worst because I can't hear people speak and appear like a mindless idiot and it's almost impossible to break the pattern."

hojoy@herojoynightingale.me.uk

FROM THE WINDOW : current edition

hojoy : Hero Joy Nightingale's homesite

this site was last updated on 24 April 2000