Notes & Scribblings
My Medium.com posts
my first post on Medium.com: 'Pleased to meet you ~ let me tell you a bit about myself' 18.08.2021
Pleased to meet you…. part 2 02.09.2021
Living as a Thalidomider ~ challenging prejudice, stereotyping and discrimination 21.09.2021
‘Simulation exercises’ ~ are you just having a laugh? 03.10.2021
Low Expectations, Prosaic Ambitions [Affairs of the heart, part 1] 13.10.2021
A shameful secret 29.10.2021
My girlfriend the sociopath 11.12.2021
First Impressions 15.12.2022
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Meeting the 'Leaders' ~ an early rant
I wrote this during the election campaign of April/May 2005, when I was invited by Capital Radio to “Meet the Leaders”
Early Sunday morning I went to Capital Radio in London, just off Piccadilly Square, the police and security flunkies were very noticeable by their ubiquitous presence. After the usual frisking and searches I was ushered into the Green Room and started chatting with some of the other 19 guests.
We were collectively referred to by the staff at Capital as the 'experts' and then we were all given large tags adorned with the Capital Radio banner and underneath a 'UK Leaders Live!' logo on them next to our names [I kept mine as a souvenir].
The other 'experts' were an eclectic and disparate bunch including; the President of the Students Union, the leader of the NUT, the national campaign director of "Stop The War!" coalition, the delightfully articulate Director of 'Liberty' Shami Chakrabarti, the head of UK's branch of 'Amnesty International', the mother of the murdered young black man Stephen Lawrence, Doreen.
A retired copper who ran a campaigning group urging tougher sentencing, the lovely Nell McAndrews [dunno what she does but I'm sure she does it well!] who was there to talk about being burgled twice and she now wants to leave London. I managed to have a long chat with all of them.
The final person to arrive was Claire Rayner. I've always admired her for her outspoken views and her stance on religion. I was shocked though at how old she looked and she didn't seem very well at all. She shuffled in slowly on two walking sticks and panting for breath - three people immediately jumped up and offered their seats. But once seated and composed she soon started chatting and laughed approvingly at the sticker she noticed on the back of my chair which read "The world would be heaven without religion".
Claire is Vice President of the Humanist Association [of which I'm a member - as well as Liberty, Stop the War! and Amnesty International; do you think I'm a joiner?]. But Claire was there to slag off the state of the NHS and criticising its privatisation by stealth under this 'Labour' Government, drawing on her knowledge and experience as a former ward Sister.
Anyway, after about half an hour the producer walked in and told us the bad news. We'd only be meeting one of the three leaders - Chas Kennedy would though be speaking to us on the phone from Scotland.
However, HRH Prince Tony didn't want to be quizzed by any of us lot but would take pre-selected phone calls from the 'general public'. Consequently, after Kennedy's slot we would have 2 minutes to leave the studio before phony Tony swanned in!
The producer mumbled something about Tony not being properly briefed of the procedure [even though it was planned week ago and it was to be networked across the whole country!] ........... Claire shouted that he was a "damned coward!" which then prompted the embarrassed producer to say "oh Claire you're awful!" - "no, she's right!" I retorted.
Obviously, his cronies and advisers didn’t want a repetition of his disastrous recent appearance on BBC's 'Question Time' when the audience booed the sweaty, lying, psychotic mass murderer when he walked into the studio. We 'experts' of course wouldn't have done that as we were all far too civilised.
We were all finally seated in the studio in front of the 2 presenters - Margherita Taylor [who??] and Krishnan Guru-Murthy from Channel Four News. Guru-Murthy said he would single us out on particular issues but we should feel free to raise our hands if we wanted to speak.
Michael Howard was the first. Wearing an open necked pink shirt he looked very haggard and had the demeanour of someone who knows he is a loser.
He smiled politely and said hello to us all and I was almost beginning to feel sorry for him. Margherita solemnly announced that Howard's favourite record was "Everything I do" by Bryan Adams [we all tried to stifle our laughter/vomit] as a few seconds of it was played with Howard looking highly embarrassed [oh the indignities politicians put themselves through!].
Krishnan's first question to him was very blunt and highly ageist; "Aren't you too old to be running the country Mr. Howard?" - at which point Howard looked about 100 years old. He stumbled and waffled his way through the question as adequately as well-briefed and well-seasoned politicians do - the quarter hour just flew by.
Doreen Lawrence attacked him brilliantly on his appalling show as Home Secretary and Claire Rayner managed to get in a few seconds - she wanted to say a lot more but Krishnan forcefully shut her up. The rest of the time was taken up by articulate and well-rehearsed phone callers. I raised my hand twice to speak - Krishnan clearly saw me as I was sitting right in front of him in the front row, but I [and most of the other fellow panellists] were pointedly ignored.
Then Howard left looking a bit more deflated than when he came in and it was Charles Kennedy's turn - talking on the phone. He spoke to Shami Chakrabarti and the Student Union's President. I raised my hand twice more and frantically tried to get the attention of Krishnan - but to no avail. We were all beginning to think it was a waste of time........ I'd been awake most of the night composing my clever questions!
I whispered to the "Stop The War!" bloke sitting next to me "what could they do if we refuse to leave when it's Blair's turn?" – he grinned and said "ok, I will if you do". I am convinced he thought I was joking, but I was deadly serious - despite all the security flunkies, there were twenty of us there and the live programme would have at least been delayed so Blair would've had no choice - face us or be off the show!
But when Kennedy said his goodbyes [his favourite record by the way was "Heroes" by David Bowie] we were all ushered out. Everyone got up and made towards the door. I didn't move. I was the last one behind Claire and a member of Capital Radio was holding open the door smiling sweetly. "Oh sod it!" I yelled and went down in the lift too.
The room next to the green room was blocked by about eight serious looking blokes in suits and holding two-way radios - obviously Blair was hiding behind them until we were all safely out of harms way. "He's a bloody coward!" I yelled over their heads.
Everyone was fuming in the Green room that we couldn't even question the bloke that's already won the election. The bloke from "Stop The War!" was saying to no-one in particular "I'm gonna make sure everyone hears about this - I'm gonna put something in our paper" ..... I just looked at him contemptuously.
"You're all welcome to listen to the rest of the show in here" piped up the flustered radio woman ~ but most of us left, as we just couldn't be arsed.
© Kevin Donnellon first written 2005 - further edited and posted on Facebook 2011
Claire Rayner sadly died 11 October 2010
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Mother is in her twilight years [or months, days ~ who knows?], she is very physically frail (her limbs are much thinner than Daisy's) and in an advanced state of dementia.
My sister Joan has been calling in to see her most nights after work [she runs the office in a local primary school] to cook her dinners. My wife Angela helps Joan at weekends and for the last couple of weeks Angela has been calling in every weekday morning after dropping Daisy off at school, to help Mother get washed, dressed and do breakfast for her etcetera.
Some days are better than others but Mother is deteriorating rapidly and most nights she sits in darkness and can't even be bothered to watch TV.
My sister takes her shopping every Saturday and my nephew calls in Sunday mornings with her paper. We've also brought her here more regularly for dinner (hopefully she is coming tonight) - but she's forgotten where she's been by the next day and generally lives in her own fantasy world, making conversation with her virtually impossible (I miss our political arguments), so we basically just listen and let her drone on - sometimes temporarily diverting her by discussing other topics, but she quickly goes back to her fantastical and illogical stories, often repeating them from the beginning!
Daisy refers to her as "my Nan with white hair". Mother often stubbornly refuses to go out or even get dressed some days - but Angela managed to persuade her to go to her hairdressers today - she used to go every week, but hadn't been for a few months now. She looks very happy!
© Kevin Donnellon - first published on Facebook 2015 and edited here 2018
13 April 2017
We've left Daisy in Wales with her Nanna and Bampi and she'll then spend a fun weekend with her Aunties Ruth and Emma. Angela, Ollie and I came home a night early - Ange drove home from Newport (I drove from Windsor to Newport). The road works were horrendous and we got home after 2am!! (leaving at 8.45pm). We had a fabulous week. But on phoning my sister at 4pm I discovered my mother had sadly died, at 3.30pm. This wasn't a surprise as she had been very ill for a while. The retirement home she lived in for the past few weeks were fantastic with her. She died in her sleep in hospital with one of my sisters by her side. I'll write loads on her again but I have lots to thank her for in terms of fighting for justice, battling to get me into mainstream education, battling with lawyers, doctors and for lots of other things: especially not leaving me in the hospital when I was born, even though the medics told her that I'd probably only live for a couple of weeks. Mother was a fighter and feisty, a strong woman who often pissed people off - and I have a lot to thank her for. She has also survived a heart attack and bowel cancer over fifteen years ago. Mother had a very good innings - living to almost 89 and she had six children, many grandchildren and great grandchildren. She came from a huge family and I think she outlived all of her siblings. I'm glad she survived long enough to see me married (she loved Angela - she disapproved of most of my other partners!) and she lived to see our children Daisy and Oliver. In some ways my Mother died a while ago - when her mind and body started to fail her. I missed our heated political debates and although she was a dreadful cook (she admitted as much) I missed visiting her for Sunday roasts. Visiting her in the nursing home [not as often as I should have done - but my sister visited her every single day] in her last few weeks she was just a fragile shell of her former self, which upset me greatly. But sometimes her razor sharp wit and cheeky sense of humour would spark up for a brief flickering moment . I last saw her on Mother's Day.... she literally didn't know what day it was. At least she is no longer suffering. I know many people have much much shorter lives (including my father and my eldest brother and my cousin who died at the far too young age of 16) and so, for that, I am grateful. I'm off to bed - then my sisters and I go to the funeral parlour to get on with everything that needs to be done.
© Kevin Donnellon - first published on Facebook 2017 and edited here 2018
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Father's Day 2018
I wake up bleary-eyed and focus on Daisy who is standing at the side of the bed, arms behind her back and staring at me like a stern ward Matron.
“Hello Daddy!” she says jovially and before I can responds she shrieks “Mummy! Daddy is awake!!”
she continues “Daddy?”
me: “yes Daisy?”
“It’s Father’s Day today you know”
me: “ooh yes, so it is!” [I try to sound enthusiastic]
“D’you know what that means?”
I want to say ‘Yes, it’s a capitalist fabrication designed to get
people to waste money on tat that nobody needs or wants and we
should take no part in this mendacious hogwash’. But I don’t, partly because I don’t want to spoil my child’s fantasy
[there’s plenty of time to disappoint her with the truth about Santa, the Easter Bunny, the Tooth Fairy and Jesus later]
- but mostly because the words ‘Turkeys calling for Christmas’ crossed my mind; I just might get some great prezzies this year!
“It means ……” she pauses, thinking “It means you can do anything you want to do today!” she exclaims.
I want to say ‘Well I’ll have another hour of sleep please, go away!’ but I just say feebly; “Ooh, marvellous!”.
“Daddy?”
me:“yes Daisy?”
“Do you know? … on Father’s Day all Daddies have breakfast in
bed?”
I ponder this awful suggestion. Me: “hmm no … I don’t like crumbs
in my bed. I’d probably spill my tea too - can I have my brekkie in
my office? [I want to add ‘with the door firmly closed’]”
she looks a bit disappointed “You did say I can do anything I want
to today” I add hastily
“Oh okay, but next year you must have it in bed. You can buy a
table for the bed” she suggests helpfully.
Me: “Okay” [she’ll have forgotten this rule by then I reason].
“Daddy?”
but before she can continue Oliver jumps on the bed like a
hyperactive monkey - climbing on top of me and bounces up and
down frantically shouting “Ay-eeee Aye Ayeeee Hiya!”
“Oliver’s saying Happy Father’s Day Daddy!” Daisy offers
helpfully.
“Daddy?”
Me: “Yes Daisy?” I pant, pushing Ollie off, who happily sits next to
my face and pulls my hair.
“Do you know? … on Father’s Day me and Ollie have to be good
all day?”
“Oh good” [I want to add ‘you should be good EVERY day you
spoilt child!’]
“Daddy?”
Me: “Yes Daisy?”
“Do you know? … on Father’s Day …”
Me: “Have you been reading about Father’s Day?” I interrupt.
“Yes!” she says exasperatedly “Do you know? On Father’s Day I
have to read you a story tonight when you’re in bed?”
Me: “I’ll tell you what, you can read me a story when you’re in
YOUR bed tonight”
“Oh okay” she reluctantly agrees.
Angela walks in carrying three parcels.
“Morning Daddy! Happy Father’s Day!” she beams.
Ollie starts bouncing again on my head shouting “Aye! Aye! Hiya!
Daisy! Daisy!”
Angela tells me that Daisy has picked all these herself
“Oh marvellous” [I hope I sound enthusiastic].
Angela’s wrapped them very tightly using brown paper and lots of
sellotape.
Daisy helps me open them.
“This first one is your favourite and it floats on water!” she says
tearing at the paper.
“Don’t tell him what it is!” Angela laughs.
Me: “does it quack?”
“Yes it does!” she beams.
It is a rubber duck. A ‘Superman’ duck.
The other prezzies are a large plastic mug with a cartoon of
Batman and the words ‘My Dad is the world’s greatest Super
Hero” and an oversize bobble head called a ‘head knocker’ of the
Incredible Hulk … okayyyy. Ollie shouts “Ooooh oooh!” when the
presents are opened but he looks scared and recoils slightly when
he sees the Hulk figure - it does look fierce.
I’m finally allowed to get up and have breakfast. Daisy runs into
the office where I’m getting annoyed watching the Andrew Marr
Show.
“Daddy! I forgot this!” she kisses me on the cheek handing me the
Father’s Day card. "Happy birthday Daddy.... Oops! I mean Happy
Father's Day! I love you!” Ollie runs in dragging the Dyson behind
him [for some reason the vacuum cleaner is his favourite toy].
“Daddy!” he shouts - or rather “Dayy-dad-Dais!!!” …. I’m a very
lucky man and I love my kids, my wife and my life to bits.
The house is very quiet now. They’ve all gone to the key park with
their Aunty Joan and cousin Lilith. Thank goodness
© Kevin Donnellon 2018
A Sad Farewell
12 May 2011 at 15:34
I'm off tonight to a farewell banquet at a Chinese restaurant in Manchester to say ta ta to my fellow Regional Advisory Group panel members from Granada TV.
It was an Ofcom requirement for the station to have a group of people from a ‘cross-section of society’ who would meet about every three months and give their opinions on their programming output - often in front of producers, writers and the odd presenter or actor. In reality the members were largely middle class [some were VERY wealthy] professionals or business directors. I was there as the token disabled person - but I made it clear that I had forthright opinions on many issues as well as disability.
It was chaired by non-executive Director of Granada Plc Sir David Trippier - former Trades and Industry Minister in the last Tory Gov't ..... he had succeeded from the late Alan Clark. 'Sir David' [as everyone addressed him] was a friendly enough bloke who, for a Tory, was occasionally quite witty.
I remember we had an early morning meeting at 10am and they put on a spread of fancy petit fours - Sir David said he would've preferred bacon butties. As a group we all got on very well - around the table were two Knights, 2 OBEs and 1 MBE ....... hardly a cross-section of society!
One of the actors who attended one of the meetings was Richard somebody-or-other who had murdered a bunch of people in Coronation Street apparently - he came to the meeting in a suit but wearing the actual black leather gloves he wore to commit his dastardly acts.
I was on it for about ten years. THEY say that the RAG is not needed now because they get plenty of opinion from their website. I say I'll be missing out on the finest hot n' cold buffet lunches and dinners ever provided! Wasn't that much impressed with their progs. and I never watch their flagship prog. Corrie [why has it survived for so long?].
I did write lengthy witty reports to read out though and whenever I was critical I always tried to be constructive.
The evening meetings had the best food as they were held in the very swanky penthouse at the top of the TV Studios [that floor could only be accessed in the lift by a key]. It was a huge flat (covering the whole floor) luxuriously furnished in classical neo-Georgian style.
So it's the end of an era tonight - but at least I won't have to watch ITV again [unless there's a rare gem on it like a John Pilger documentary].
© Kevin Donnellon 2011
'Simulation exercises' in disability awareness training sessions .......
.......... these exercises reinforce rather than expose the limitations of conventional individualistic approaches to disability.
Simulation exercises are commonly used in colleges, also by professional bodies who have regular contact with disabled people - such as social workers, physiotherapists etcetera and by organisations which are ostensibly run for disabled people (often just for a single impairment group) rather than by disabled people, such as the charities e.g. the ‘Royal National Institute for the Blind’ [R.N.I.B.] and ‘Scope’ [formerly ‘The Spastics Society’].
The supposed rationale for these exercises is to give awareness to non-disabled people of what it is like to be ‘disabled’ by say, sitting and manoeuvring oneself in a wheelchair for a couple of hours or wearing an eye patch or a blindfold to get an ‘understanding’ of being visually impaired.
Many trainers [invariably they are non-disabled themselves] who adopt these practises often argue that simulation exercises are valuable and beneficial in raising awareness to the non-disabled participants of the ‘problems’ with which disabled people face on a daily basis. Many disabled people however argue that these exercises are completely superficial as they are only concerned with one singular aspect of disability i.e. one specific impairment and thus they do not go to anywhere near a complete understanding as to how a disabled person lives, feels emotionally, nor can they accurately replicate a disabled person’s interaction with other people on a day-to-day basis.
Sally French points out that the “experience of disability is all pervading” and thus it would be just as “fruitless” for a man to dress as a woman “in order to gain insights into her experiences” [French S. 1992: p6].
These forms of practises can, in themselves, exclude some disabled people – for example, a person with a hearing impairment who lip reads would be disadvantaged in the wearing of the blindfold exercise.
Likewise, a wheelchair user would of course be excluded from the ‘negotiating the stairs using crutches’ role-play exercise.
Many disabled people also argue that because these simulation exercises are usually treated as a fun game and are often exciting for the participants involved, they are consequently an insult to people who really are blind, deaf or a wheelchair user [or whatever]. Many disabled people feel that these exercises are degrading with non-disabled people having fun at their expense.
Simulation exercises are especially insulting because the participants can go on leading their ‘normal able-bodied’ lives after the exercise whilst disabled people don’t have such luxury of choice, as they [usually] remain disabled for the rest of their lives.
Simulation exercises, by their very nature, can usually only deal easily ‘mimicked’ impairment. That is, those impairments which virtually anyone can act out – complicated impairments such as epilepsy and autism or hidden impairments such as dyspraxia would not be appropriate impairments to copy in a simulation exercise.
By focussing upon one single type of impairment, the participants do not get anywhere near to accurately understanding what disability means to many people. There is no such thing as ‘the disabled’ – there is no single homogenous group, for even within a single impairment group there are vast differences in lifestyles, breaking into a myriad of differing experiences
in terms of gender, sexuality, class, culture, race, age, education etcetera.
These exercises ignore the fact that everyone’s life experiences as disabled people differ enormously. Disabled people who happen to share the same impairment labelling may also feel differently about how they view disability. Some may be politicised and may therefore understand their disability as a social construction of oppression and discrimination by society, whilst others may still understand their impairment as one of personal individual tragedy.
There may be also great differences with people who are born with their impairments and those that become disabled in their later years. Those are born disabled will more than likely have developed sophisticated coping strategies to deal with everyday practical obstacles or attitudinal barriers etc.
Simulation exercises shifts the focus to a personal tragic model of impairment rather than a social model of disability – they are often very negative, focussing upon limitation and inability. In contrast, as French points out, disabled people can often be viewed as “superhuman and heroic”, performing extraordinary physical feats and overcoming seemingly impossible problems and dilemmas [French S. 1992: p5].
Paradoxically disabled people are perceived as either being pitiable, helpless and reliant upon others or they are the ‘super crip’ who overcome all challenges with a cheerful disposition. Thus the exercises merely reinforce the false and misleading stereotypes by which a non-disabled society views disabled people.
However, I think it is important at this juncture to stress that I am not arguing that individual experiences are not important, they are. Indeed, it can be argued that observing how individual disabled people live their lives in the community can be extremely useful in understanding issues of inequality and exclusion – for example, architects observing how wheelchair users or people with visual impairments cope [or otherwise] in public buildings would be invaluable training.
Likewise, for disabled individuals to record their experiences say, on a video, would be an invaluable resource for students and those working in the social work or medical professions. Also some exercises, which raise disability awareness, may in fact be of great benefit to disabled people.
For example, the teaching of the correct procedure when guiding a blind person by the arm, or learning that shouting does not help when communicating with someone with a hearing impairment etcetera.
Perhaps the only positive outcome of a simulation exercise might be to raise awareness of inaccessible environments to non-disabled people who might have previously not given access a moments’ thought. But it is debateable as to how much thought this is given to after the simulation exercises.
People who are temporarily impaired, who may use a wheelchair for a couple of months following say, a road accident, quickly realise the importance of dropped kerbs, wheelchair height buttons in elevators and wide doorways etc.
Simulation exercises are usually held in ‘clinical’ or artificial environments i.e. in classrooms or college campuses. Due to obvious implications of safety, plus the difficulties of logistic planning, rarely do the exercises take place in busy shopping centres, on main roads or on buses and trains. Thus, ‘real-life’ situations can rarely be explored.
Simulation exercises also ignore the fact that being disabled can incur extra costs and expenses. Electric wheelchairs, adapted cars and modified homes etcetera are exorbitantly expensive for the majority of disabled people as they are more likely to be either unemployed or on a low income.
As Professor Colin Barnes argues; “there is little dispute that disabled people are more like to be out of work than their able-bodied contemporaries” [Barnes, C. 1994: P63]. The result is that many disabled people struggle on without adequate aids and adaptations, waiting for many months [or even years] for their local Social Services department to provide these or, if their particularly impairment qualifies, have the alternative of trying their luck with a discretionary charity. This also applies to personal care – which is often means-tested, with costs and quality of care varying across the country.
These exercises are also particularly unhelpful in that they do not address the real issue which the disability movement has been consistently fighting to push onto the mainstream political agenda; that disabled people have historically been excluded and marginalised by society in terms of economics, education, transport, housing, health and employment.
In short, many disabled people argue that there has been far too much emphasis upon impairment rather than looking at the issue of rights. As Sally French notes, by way of example, “it is ironic that at the same time as these programmes are being introduced into schools, many disabled children are being educated in segregated establishments” [French S. 1992: p4].
To fully understand the issue of rights and disability, it is necessary to look at the historical roots of disability segregation, oppression and marginalisation. ‘Disablism’ is a relatively new word in the language of sociology, but it has similar roots and causes as racism, sexism and ageism etcetera.
It is now recognised by many academics that for years oppressive disablism has had a major negative impact upon disabled people in a variety of ways, from institutionalisation to negative stereotyping to the subsequent internalisation and lack of self-worth that this brought.
Such experiences and effects were epitomised by Chinnery when he stated: “It is a serious contention that a great majority of the psychological states disabled people suffer from are the product of being discriminated against and feeling inadequate, disillusioned and unable to do anything about this.’’ [Chinnery 1994: Vol. 4 No.1].
There is a great deal of confusion (even among academic social scientists) with the meanings of ‘disability’ and ‘impairment’. A person could have an impairment[s] and yet not be disabled. For example, a person who wears glasses for reading obviously has a visual impairment, but is not considered disabled since people who wear glasses are not generally discriminated against by society, it is considered a ‘normal’ occurrence.
However, a person with a hearing aid may well face discrimination, by an employer for example and could thus be considered as being ‘disabled’ by that discriminatory employer. Therefore to look at disability in this context, one must equate disability with discrimination and perceive this as a civil [human] rights issue.
Over the last twenty years or so, there has developed two main social theories of disability, namely; ‘the personal tragedy theory’ [now referred to as ‘the medical model of disability’] and the ‘social model of disability’.
In studying the origins of the medical model of disability, one can trace it back to the birth of the Industrial Revolution in the early nineteenth century, when disabled people were confined to the margins of mainstream employment.
It was seen as important for the capitalist class to identify and classify disabled people, as their industrial world grew, in order to distinguish between those who could not work under the new, arduous working practices and those who would not work.
As industry became more and more mechanised and profit orientated in an ever increasingly competitive capitalist market, disabled people found themselves not only unable to work the new machinery, but were regarded as a liability by their employers and society at large.
It was at this point in time that the ‘sick role’ gained its ascendancy in the ideological debates, as did the marginalising of disabled people. The shift towards isolating and stigmatising mentally and physically impaired people was now in progress. Once condemned by the medical profession into the abyss of ‘social rejects’, disabled people found it nearly impossible to regain their sense of worth and independence.
The ‘Union of the Physically Impaired Against Segregation’ (UPIAS), founded in 1972, subscribed to the view that; “Physical disability is a particular form of social oppression.” UPIAS went further, saying that “disability is imposed upon the individual as a result of the way in which society is organised and it can only be overcome by a radical transformation of society” [cited in Swain J. (ed.) et al 1993: p36].
Classification of disability as an ‘abnormality’ inevitably drives a wedge between individuals, rather seeing everyone as having differing means and needs.
The institutionalisation of many disabled people into workhouses and later into asylums thus contributed to the idea that disability was not a social responsibility but an individual one.
This has ultimately led to a lack of resources and equal opportunities for disabled people today. Thus, in accepting that as a disabled person one is socially and medically inferior, a lack of belief in oneself will remain and deepen, as well as perpetuating this belief in the wider society.
As 'disablism' has only relatively recently been acknowledged by sociologists as a social oppression, it is not surprising to see that it has common parallels to other forms of oppression.
The isolation and lack of equal opportunities for women and racial minorities due to the social structure of the capitalist system, and its ‘divide and rule’ mentality, only serves to accentuate individual and institutional biases.
Indeed, the description of the family as an 'institution' has ironic meaning, in that many women feel as trapped as those condemned to psychiatric and disability orientated institutions run by the government.
In contemporary society it is increasingly harder for disabled people to overcome the discriminatory structure of society, as Chinnery states of disablism: “able-bodiest attitudes, policies, practices and procedures dominate the social, health and educational services to an unacceptable extent.”
[1994: Vol. 4 No.1]
These concepts of disabled people still predominate in the ‘caring’ sectors (social workers, rest homes etc). The advertising industry working for the large charities such as ‘Scope’, still uses imagery of the helpless victim as a necessary requirement for its fundraising campaigns.
Social workers still view themselves as being in control of their ‘clients’ and doctors still think they know best when it comes to a person’s health and well-being. It is this powerful hegemony of the disabled person being vulnerable to an all-controlling authority that the disability movement has been striving to change.
Thus many disabled people have over the last few years decided to develop and adopt their own programmes for training, using their own terminology and language rather than adopting the practices and terms of the medical establishment.
This independent assertiveness on the part of the disability movement developed greater impetus from 1981 when the British Council of Disabled People was formed, resulting from the International Year of Disabled People. Disabled people began, for the first time, to become organised.
The establishment of ‘Centres for Integrated Living’ and other organisations run solely by and for disabled people started to give a political and social voice to a significant minority in society, which had long been silent and submissive.
As the disability movement developed their own culture and its own language evolved, so did the form of training. Initially the focus was on ‘disability awareness’ – the idea that disabled people were not simply to be hidden away in institutions or hospitals, but real people who had valuable contributions to make in a diverse society.
There was a vital need to re-educate non-disabled people to the realities of disability, to get away from the stereotypes as portrayed in the literary and dramatic arts, by the media and by the charities and government departments. Professionals working with disabled people [doctors, nurses, social workers etcetera] were particularly in need of training and being taught ‘awareness’ of disability issues.
With the campaign for civil rights by the disability movement and the eventual introduction of the Disability Discrimination Act [1995] the emphasis moved from awareness to equality.
Disability Equality Training [DET] was developed by disabled people themselves and its main function was to facilitate and promote the Social Model.
Various C.I.L.s and other disability groups began to provide service training aimed at the specific needs of an organisation or a client group. The training was focused-based upon the principles of inclusion and anti-discriminatory practises. Participation at all levels by the people in the training exercises would become a key element.
Rather than preaching or lecturing, non-disabled and disabled participants would together discuss, analyse and carry out practical activities, which aimed to break own barriers of discrimination.
The importance of language would also be high on the agenda, as would subjects such as media representation [and marginalisation] of disabled people or issues of fundamental rights, such as the right to work or the right to accessible ‘public’ transport.
Within the DET training programme, the primary exercise would be to look at the various discriminating barriers, which are the fundamental causes of disablement – both on the levels of attitudinal, organisational and physical.
The key difference between the DET programmes and the various simulation exercises that are carried out is that DET is generally professional, well planned, orientated towards common goals and values, compared with the ad hoc, divisive and discriminatory simulation exercises.
Simulation exercises may, on the face of them, be well intentioned, but serve little purpose to disabled people and merely state the obvious to the non-disabled participants.
DET is also about empowerment – the empowering of disabled people who may lack independence, assertiveness or just the basic knowledge of services, rights, access to benefits etc. that may otherwise have been previously denied. Often this empowerment will usually lead to a politicisation of individuals [or a group of people] who may previously have acquiesced or unquestioned the position they were in.
It is important for sociologists to recognise that this politicisation and empowerment has far reaching consequences beyond the individual Disability Equality Training sessions. For, whether through direct action [civil disobedience] by groups such as the Disabled People’s Direct Action Network [DAN], pressure groups such as Right Now! or the establishment of C.I.L.s and other major disability coalitions, disability is now an increasingly powerful and influential force in the arena of mainstream politics in Britain.
The introduction of the Disability Discrimination Act [1995] and the establishment of the Disability Rights Commission, though they are not by any means perfect or complete are still, at the very least, important steps in the right direction in terms of rights and anti-discrimination legislation and practises towards enabling disabled people to become equal members of society.
DET is regarded by many people in the disability movement as a way forward to promote the interests of disabled people and break down barriers to inclusion. It has also provided an opportunity for employment for many disabled trainers, who can often command high fees. DET programmes are also a major [if not the main] source of income for many CILs or other disability organisations.
Equality training therefore is a growing business where financial gain for some is potentially high. It is this professionalisation that has caused some concern to some disability activists.
There is a real fear in the disability community that there is an educated, middle class, elite that is not representative of the majority of disabled people. This apparent ‘elite’ are perceived by some to be comprised of ‘professional crips’ i.e. making a living from their impairment.
This sparked a raging debate between members of the Greater Manchester Coalition of Disabled People in the articles “Where Have All The Activists Gone?” -‘Coalition’ magazine [August 2000]. The basis of their arguments, from activists such as Anne Rae in her piece entitled ‘Debate or Divisiveness’ argued that many people in the movement had become complacent after the implementation of the DDA, not wanting direct action, not rocking the boat politically, the suspicion being they were only interested in safeguarding their own futures.
Anne Rae argued; “This is dangerous nonsense which often only ends in trips to Buckingham Palace for gongs for people who advocate the route of appeasement and compromise” [p6: 2000]. The main targets for the wrath of Rae and others were members of the BCODP who were perceived to have “got tired of unsupported struggle and are cosily curled up in front of the telly” [p7: 2000].
The majority of people who are activists in the disability community however disagree with this negative and divisive viewpoint, arguing that non-disabled people, especially professionals in the medical and social work fields have made a good living at the expense of their disabled ‘clients’ for a long time so it is only appropriate that this unfairness is re-addressed.
A perhaps more important and reasonable concern is the fact that anyone can become self-appointed trainers and disability ‘consultants’ without any formal training or regulation.
There is currently no regulatory body to establish codes of practise or to even ensure that the training is run with the principles of inclusion. There is nothing to stop anyone running training courses even if they have little or no understanding or information about the social model.
Others argue that too much regulation would stifle the development and evolution of the training and barring disabled people from running training sessions on the grounds of the lack of their intelligence or their political understanding would go against the fundamental principle of inclusion.
It is also argued that the CILs usually serve a self-regulatory role in terms of their evaluations of their sessions and the continual support of their trainers. Peer support is also an important factor in making sure trainers have all the resources, experience and above-all the confidence they need.
The social model of disability has become such an important factor in the lives of many disabled people that even the charities [who until recently promulgated the medical model so effectively in its fundraising by portraying disabled people as helpless, tragic and victims] have jumped on the bandwagon and are now trying to promote themselves as advocates for rights and independence for their ‘beneficiaries’.
One example of this is the Leonard Cheshire Foundation. An organisation which runs large residential establishments, many activists say are little better than detention centres, now portrays itself as being fully supportive of inclusion and independence. It recently ran a major advertising campaign featuring posters with the internationally recognised symbol of a wheelchair user holding a front door key and the word ‘enabled’ underneath.
Charities have also been keen to set their own agendas in terms of equality training and are making efforts to include disabled people in their planning. But many disability activists argue that they are just mounting a cynical exercise at pretending to be inclusive, for if they really believed in the social model then their organisations would be run entirely by disabled people [or at least they would be in the majority]. Many would argue that their real agenda is still to profit from the discrimination and marginalisation of disabled people.
This leads to another potential problem with which CILs and the disability movement face – that is, incorporation. In a frenetic capitalist economy alliances would perhaps be inevitable for some organisation if they want to keep financially viable, with partnerships of non-disabled people and organisations that may not be as committed to disability rights and equality as the movement might like.
Already, some organisations have had to employ the expertise of non-disabled consultants and advisers.
But aside from these problems [both real and theoretical] there is an overwhelming argument against the practise of simulation exercises in favour of the empowering and ultimately beneficial [for the whole society] programme of Disability Equality Training.
DET generally comprises programmes which are on-going, constantly changing and evolving as the disability community itself is constantly changing and evolving; in terms of its cultural identity, development of its language and its increasing recognition by the politicians.
Therefore, each training session is usually evaluated and assessed [often by research and feedback of the participants] and usually improved upon by each successive session.
It is also important to get a balance of the practical as well as the theoretical. Thus trainers could get participants to explore the inaccessible physical barriers in the surrounding community as well as looking at the theory of the social model.
For example, non-disabled architects may understand the principles of the social model in theory, but might not realise how their profession is generally helping to create disability in practice.
Rather than seeing disability as a ‘personal tragedy and misfortune to those individuals who are unlucky enough to be impaired’ [as implied and reinforced constantly by the simulation exercises], the DET programmes challenges these old negative notions and sees great potential and positiveness in diversity and recognises the power and strength of unity in the face of adversity and prejudice.
_____________________________________________
Sources:
Barnes C. ‘Disabled People In Britain and Discrimination’ (2nd edition)
Hurst [1994]
Chinnery, B. ‘The Process Of Being Disabled’
Social Work Practise Vol. 4 No.1 [1994]
French, Sally ‘Simulation Exercises in Disability Awareness Training’ [handout]
taken from Disability Handicap and Society Vol. 7 (3) [1992]
French, Sally ‘Confronting Disabling Barriers: towards making organisations
Gillman, Maureen accessible’
Swain, John [Editor] [Venture Press] 1998
Rae, Anne “Where Have All The Activists Gone?”
‘Coalition’ magazine August 2000
[Greater Manchester Coalition of Disabled People]
© Kevin Donnellon [first written as an essay for my Disability Studies module at Edge Hill University circa 1998]
My brother Terry
First written 18 October 2013
A busy day today. We are off to visit my recently found long-lost brother Terry (although he prefers to be called Terence) in Prenton, the Wirral. We have to get there at 12.30p, prompt (he gets stressed if people are late - my sister arrived nearly an hour late as her sense of direction is worse than mine and he wasn't at all happy).
He will have a tea laid out on the table consisting of tiny cakes and even tinier sandwiches (literally a mouthful which will barely touch the sides). He will make us very welcome but then after an hour and a half or so he will announce that it was very nice of us to visit as he motions us to the door.
Apparently his house is the opposite of minimal - full to the rafters of all kinds of stuff, but he is meticulously tidy and everything is in order. I hope to goodness Daisy doesn't run riot!
The conversation will consist of small-talk and chat about his garden or his past. I know all this because my sisters have described their visits, telling me much more besides but I'll reserve judgement and maybe pass on interesting details later - or maybe I won't. He isn't very cultured and has few interests apart from cycling and his passion for ships and all things maritime (he used to work on the large passenger ships such as the QE2).
He is quite fit for a 60 year old, cycling everywhere - he used to be a semi-professional, winning many races including the Milk Cup on his very expensive handmade bicycles - but I forget the name of the company who did them. He has a Jaguar in his driveway but he rarely drives apart from when he visits Crosby.
Well that was a pleasant(ish) afternoon in my brother's house [see previous post] - well no great disasters really. We found the place okay and i was there dead on 12.30. Terence had parked his car on the road so I could go up his driveway. His driveway is long but v. narrow and i hit his gatepost.
I backed up quickly - but the only damage was to the van's paintwork, which was already wrecked anyway. I parked on the road and Terry put his Jag back in the driveway. To get past his car in my wheelchair i had to drive over loads of his plants, flattening his flowers and perennials - the other option was to hit his car, I didn't wanna hit his car! But I couldn't get past the front of the car anyway - so he reversed out again.
We brought with us portable fibreglass ramps - but they were too long for the front door, being blocked by shrubs, plants and a large red wooden box for his post. So we went through the garage to the back door, which was much lower. The garage was full of tools, bikes, spare parts etc but highly organised and ordered with neat shelve packed with tools, nails, screws, paint pots etc.
The garden was enchanting - heavily planted with lots of trees. Two very large wooden green and white pagodas, lots of colourful trinkets, ceramic birds, coloured glass balls, ornate tiles everywhere..... on the floor, the walls. Ornamental stuff, water features and tons of plants.
A huge jigsaw puzzle of an autumnal scene with lots of birds, framed behind glass and hung on a wall. Ornate lamps hung in various shaded places. The rear of the garden hidden by large and dense trees overhanging a narrow winding orange coloured pathway which apparently led to a pond - but i didn't risk going down it to destroy even more of his fauna! On the whole it was very bucolic and very tasteful - on the whole.
my Mother with my brother Terence
Finally in the house. Hmm how best to describe it - Country Life cottage meets Notre Dam Cathedral! Different flowered patterned wallpaper on the walls. The first thing I saw was a large fish tank with tropical fish - Daisy loved it.
He told me once he wasn't particularly religious - but Carrie's mother didn't have as many crucifixes .... they were everywhere! A collection of commemorative plates featuring various popes on a cupboard. Above the fireplace a huge tapestry depicting the 3 Kings visiting Mary and baby Jesus, bearing gifts. Colourful stained glass images hung on every window. An ornate mirror covered in small photos depicting images of Mary, Jesus, Popes etc At the top of the stairs a large painting of Jesus with a silver candleholder sticking out of it with a red candle.
The other main theme competing with this Catholic stuff was his other passion - ships! Pictures of ships everywhere. Framed first day covers of stamps commemorating various passenger liners covered the wall going up the stairs. A large detailed model of the titanic on the top shelf of his bookcase, backlit to impressive effect.
Everywhere you looked you either saw a religious artefact or a maritime one. And in between was various floral decoration or other ornaments. Two large sofas with lots of floral cushions and a large wooden armchair in the same fashion. I confess that when I was a bachelor i had lots of stuff [or "shit" as Angela called it] but he beats me by a mile.
But the place was surprisingly spacious, extremely tidy and in some ways quite homely in a strange sort of way.
The bookcase was crammed with mostly maritime books. I spotted a large book at the bottom shelf- a biography of Margaret Thatcher.
As soon as we were in he asked if we'd like some music on. "yes okay" I said with enthusiasm. It was Cliff Richard .... "oh god.." I grumbled under my breath as "Wired for sound" came through the speakers, thankfully at low level. Angela nudged me and mouthed 'be nice'. "I love Cliff Richard" she said in an attempt to break the atmosphere. I shook my head.
We gave him our presents - a box of 6 Black's dark chocolate bars [he only likes dark chocolate] which he was delighted with. "I only eat chocolate on special occasions such as Christmas, a whole bar can last me 12 months" ......
"blimey ours normally lasts about 12 minutes" I replied. Angela nudged me again. We also gave him a potted orchid - he was delighted with this too and placed it on top of his small television set. He rarely watches TV - going to bed at 7pm.
He brought out a large plastic bag. "I have something for you ..... for your new house, or more precisely your garden".
"It's not a garden gnome is it?" I asked worried, another nudge from Angela.
He either didn't hear me or chose to ignore me, but I speedily backtracked with the words "oh how cute" as he pulled the large red gnome out of the bag, the hideous thing wearing a blue hat, an axe over his shoulder and head bobbing on wire. "It scares off the birds from the veg patch, I have one" he said, almost apologetically.
We also got an ornamental squirrel and a rabbit. Plus a large resin toad stool. And a small tin bucket and spade and packet of seed .... "so Daisy can learn horticulture".
It was a nice gesture and we said, truthfully, that a part of the garden will be Daisy's 'Fairy Garden' .... mentally I was thinking where the gnome could be put out of sight from the neighbours.
He asked us if we could give Mother a birthday present from him. I suggested he give it her himself, but he told us he was going to visit Mother just before the year's end.
Okay I agreed as he pulled out a large padded brown envelope. "what is it?".
'Here comes Summer' was playing from his awful CD.
He pulled out a framed commemorative photo of 'Baroness Margaret Thatcher', complete with brief highlights of her political career.
I tried to disguise my disgust and shock, but probably failed as he quickly said "I'm not a great fan of hers - I admire Tony Blair far more".
That made things worse. 'You can't be my brother' I thought. Later I clocked the biography of Blair in his book cabinet.
I'm suddenly feeling extremely hot - it could be high blood pressure looking at Thatch's fizzog staring back at me, it could be Cliff Richard warbling away in the background, or the countless images of Jesus, Mary and Popes staring back at me from all directions. It's probably just a bug I've been trying to shake off - I've been going hot and cold all week.
I do know though it isn't hot in here as there is no heating on. Terry asked if we'd like the fire on when we first arrived but Angela, not liking to putting people out, said she was fine. [He has a huge old electric fireplace - there's a gold celtic cross stuck on top.] I know she's cold though because of the way she grabs and rubs her arms. I earlier mouthed silently to her 'do you want the fire on?' but she shook her head and mouthed 'no!!'.
"We'll give it to your mum when she comes on Sunday" she says sweetly.
I just make a grumbling noise which I hoped sounded like I was agreeing with her. I'm wondering though what the hell she'll make of it. Despite reading the Daily Mail she's never voted Tory. Terry claims that when he saw Mother last summer [for the first time in over 30 odd years] she had remarked that Thatch was a strong woman.
"They share many similar qualities and have lots in common" he said grinning, to me his eyes seem manic behind his large glasses.
"What date is Mother's birthday?" he asks me.
"October 12th"
"ha ha! See! they even share the same birthday!" he suddenly exclaimed pointing at the photo. It reads October 13th.
"Oh" [he suddenly seems disappointed ] "Oh only one day out. They share the same star sign, Libra, isn't that remarkable?" he grins.
Angela calmly puts the photo back in the padded envelope whilst i'm idly visualising Terry being put in a padded cell.
Daisy, who had been rolling on the floor and idly lifting up the corner of a large floral rug [there were a lot of things here that were novel to her; stairs, rugs, pictures of the Pope etc], suddenly started bawling her eyes out. There was no apparent reason for it so I guessed she was probably bored.
I think Terry likes kids - at least in the way the Victorians used to; sitting very quiet, clean and pretty and not doing anything which involved moving or making a noise. Up to now she had behaved really well….. apart from when she first spotted the fish tank.
She started banging the glass and pointing at the fluorescent tube "Lights! Lights!" she was shouting. The water started gently sloshing. Terry went pale. Angela pulled her back "no Daisy, be nice, don't scare the fish".
"ooh look at the fish Daisy" I said distracting her and showing Terry I knew about tropical fish as it used to be one of my many hobbies "they are called cardinal tetra, ooh look and those beautiful blue and red ones are neon tera and ….. you haven't got many fish in here Terry?" I asked, disappointedly not finding any more. It was a huge tank with only about 8 tiny fish.
"oh they are happy when it's not crowded". That's true, but still.
Also the tank was only about 1/3 full. The light was glaring. I assumed he was in the middle of cleaning it.
"No I like it like that, it looks more natural" {it didn't} "and it is easier to clean".
"Well i suppose it looks like a shallow stream" I humoured him.
"Exactly!" he smiled. "Now, if you get a tank for Daisy make sure it's in a solid cabinet like this!", he advised. I looked at the huge ornate but dark faux wood Georgian style cabinet. Complete with drawers and a cupboard underneath with ornate brass handles. Angela looked startled.
"yes defo!" I replied but gave Angela a look which I hoped said "don't worry love, we won't have such a hideous thing in our house!".
Daisy started banging the glass again so Angela ushered her into the living room.
So we'd been here about half an hour [it felt more like six] and Daisy was now bawling. Terry turned off Cliff Richard [hurrah!]. He opened a cupboard under the stairs and dived in. We heard him rummaging for a second then stood up again. "I bought this for Halloween but you may as well have it now". He held in his hand what looked like a plastic orange torch - the end had a large clear plastic dome with a picture of Halloween pumpkin face in it. He pressed the button and brilliant coloured lights twirled around it very very fast. Daisy still cried. "And if you press it again it makes a scary ghost noise" he said in a panic. It certainly did. "woo hoo-hoo!!" it moaned. Daisy bawled louder.
Angela took hold of it and Daisy stopped crying. "Mine! mine!" she clapped excitedly. Terry looked relieved as Daisy happily played with her new toy.
"I hope you are all hungry. I will bring in the appetiser" he announced, then "I forgot about Daisy - what does she eat?"
"she eats anything!" Angela and I both replied in unison.
He brought in two large red polka dotted cloths which he lay on the long coffee table. They met in the middle. Over these he laid another large cloth which advertised Golden Shred marmalade. Daisy started tapping it shouting "oranges! oranges!". "Yes good girl, oranges!" Angela encouraged. Terry stared at her, intently. When he went back in the kitchen Daisy started swiping all the cloths. They fell to the floor. "No Daisy!" Angela half hissed and quickly put the cloths back trying to get them as straight as before. But Daisy was in a playful mood - grabbed a cloth and ran toward the fish tank with it. "Oranges! Lights! Fish!" she shouted randomly . Angela managed to reach her before she chucked it in the tank and quickly tidied the table again, sternly raising a finger in her face and saying "No! Naughty!". This pacified Daisy just as Terry came back in.
"er can you climb out of the chair?" he asked. He correctly realised the coffee table was far too low.
"No. Don't you have any higher tables?" [I could have climbed down, but climbing back up would have been the problem].
"Hmm" he pondered with finger to his lips "what about my office?".
I looked to my left where he had a very smart writing desk - ornate like the fish tank in Georgian style with four draws either side of the chair space and a longer drawer in the middle. A green leather top. It was very organised with containers of different size - one holding identical black pencils, another holding cheap blue biros, and another holding red ones.
There was a large glass container that looked like a sugar dispenser - it was a paperweight with shells at the bottom. The metal top had six holes which held his more expensive looking pens. Various ornate and inlaid wooden boxes which held stamps, paper clips etc. Envelopes and papers very neatly piled and ordered.
I tried living like this once - I had a little wire basket from Ikea filled with my favourite acrylic pens [I can write neatly with these - or at least it doesn't look like hieroglyphics] with a label marked "Please return here after use!" - but Daisy ripped off the label and we can never find pens anywhere in this flat.
He pulled away the wooden chair, padded with the same green leather, and switched on a brass and green glass desk lamp. It was very smart.
There was no computer. Although he used to work on computers and briefly worked from home before his retirement he doesn't use them now. He actually writes letters - with paper and pen! And uses the Royal Mail! Crazy dude!
"Perfect!" I said, parking up to the desk. He brought out another red table cloth and put it in front of me.
"Bens! Bens Daddy!" Daisy shouted, grabbing his container of the [thankfully] cheaper pens, spilling them everywhere. "No Daisy, leave Daddy alone" Angela cried, gently pulling her away.
Terry did that stare again and went in the kitchen.
"This might be a bit cold, it's been in the fridge for a while" he said, bringing in three Crown Derby plates with tiny glass dishes on them.
It was freezing but delicious. Soya yogurt [plain] with various fruits and topped with cinnamon. Angela loved it and had never had soya yogurt before. Daisy loved it too and excitedly jumped up and down with berries stuffed in her mouth.
"Aren't you eating?" Terry was sitting in the armchair nibbling a plain digestive. "No I don't eat much. I'll have something later".
"Wow! you eat quickly!" he said, genuinely surprised as he cleared the empty dishes 15 seconds later. "Right i'll bring in the main course."
He brought in 3 more plates. Soda bread, toasted, topped with fresh salmon. Parsley on the side. My sisters were right, although again delicious, the toast had been cut neatly into very tiny bite size squares. Daisy shoved 3 pieces in at once and started jumping up and down again.
"Chew your food darling" Angela said.
"I grew the parsley in my garden" he said proudly, just as Daisy grimaced and spat a piece out on the table. "No Daisy! Sorry about that!" Angela said embarrassed, placing the discarded parsley on the plate. Terry carried on nibbling his digestive, staring intently on Daisy's every move.
I noticed Terry's trophies and plaques. They were for cycling. he still gets up at sunrise and cycle about 75 miles a day. In bed by 7pm. He was physically not bad for 60. He had weights on the floor under the desk too - he still works out about once a week. He regularly cycles to north Wales where he's still a member of Mold cycling club.
The conversation turned to food. He told us he was practically vegetarian but occasionally ate fish. Then he said "I love Welsh lamb with mint sauce if someone cooks it for me!".
He rarely ate hot food and hardly ever used the oven - a Belling which he's had for over 30 years, still works 'good as new'.
"Some days I have a salad then the following day maybe fish and other days I just eat fruit the entire day, it' a German tradition I believe" he droned on.
I was wondering when it would be polite to leave. I was dying for a drink though. Although I loved the soda bread I was as dry as a camel's bum in a sandstorm.
Angela chatted about her cooking and how she's becoming more adventurous.
"No i don't have a microwave, i don't trust them" I heard him drone on. I was dying to ask "do you own a kettle?" but didn't.
"have you tried caviar Angela?" he asked. "er… no" she replied.
"I have, bloody horrible stuff, too salty" I said.
"you must have eaten the cheaper stuff. Supermarkets sell it now - but it's not the real deal". he said the best was Beluga, but a tiny thimble sized jar was over £9 now.
"right now pudding. i have a special surprise for you" he smiled.
'oh christ i hope it isn't caviar!' i thought.
He brought in a glass dish with 3 compartments - long chocolate mint matchsticks, malteasers and chocolate digestive biscuits.
"I know you like your chocolate!" he handed me a small plateful.
I nearly broke my teeth - they'd been in the freezer and they all tasted of mint, especially the malteasers.
But at least he was trying to be a good host. I surmised he didn't have many visitors.
Daisy kept breaking the mint matchsticks up in pieces and dropping them on the floor - even i told her off at this point.
Finally he asked if we'd like a drink. Angela looked relieved too. He drank herbal tea but said he had 'black tea' in for us.
It was incredibly strong but at least it was wet. Angela drowned hers in milk.
Daisy had tea too but with even more milk.
No mugs, but cups and saucers and a china tea pot!
Then disaster. Daisy dropped her tea on the pale green carpet. Angela grabbed the yellow napkins to soak it up, but they were paper and they just fragmented into tiny pieces and joined the puddle.
"that carpet was here with the previous owners. i bought it off them twenty years ago" Terry said, staring again.
Eventually Angela cleaned it all up and there wasn't any stain.
Later Terry went to the bookshelf. "Did you enjoy that book on the history of the industrialisation of Wales I gave you Angela?" [i nearly choked on me tea].
"Oh well you see the thing is I haven't had much time with all the packing, for the move, we're surrounded by boxes you see and…" she spluttered.
For some reason Terry is convinced Angela is obsessed with her Welsh heritage. He got out his photos. Photos of abbeys and chapels of north Wales [I helpfully reminded him Angela was from South Wales]. Then photos of his garden when he first moved in. The huge pond with a fountain - he filled it in when slates from the neighbours roof tore through the lining one wintry night, replacing it with a much smaller pond.
Then a photo of a house in Cheshire he wanted to buy 20 odd years ago for 360k - it's now worth 2 million. Huge impressive house with amazing front garden and sweeping driveway.
"Wow you shoulda bought it" i said.
"A bit steeply priced i thought at the time" he said ruefully.
Angela stifled a yawn and asked if he got on with his neighbours.
On the whole he did but his new neighbour "came from a council estate and they obviously think differently and have different attitudes". We both bit our tongues and he said one day he heard loud hammering - his neighbour was firing an air rifle into his own shed. But they hadn't given him any problems - yet. He did moan that there are too many kids in his street now.
He then asked me did i want to look at his stamp collection.
I thought I'd rather stick shower gel in me eye again "yeah sure" I replied.
He brought out a huge black volume of undoubtedly expensive but utterly dull stamps. All neatly stuck behind plastic pockets, highly ordered.
I'd turn the page and he'd interject with things like "ah these are all from the Falkland islands - notice that they are pre world war two!". Daisy ran up and started patting the pages yelling "stamps, stamps!" but Angela dragged her away with no damage done.
He went to a drawer and pulled out a First Day edition envelope in clear pristine plastic. It commemorated the wedding of Bill and Kathy Windsor AKA the Duke and Duchess of Cambridge. He wanted us to have it!
"That's very kind but we couldn't possibly take it" I quickly said. "No, no keep it for your collection" Angela implored. "I don't collect stamps and I'm a Republican" I said bluntly, to finally counter his insistence. "Yes, we are really" Angela said "but thanks anyway".
He put it back in his drawer.
It was now 3.10 and he was rummaging for a photo of "the best house in the Wirral peninsular" of some old lord or summat. Frustrated that he couldn't find it; "I had it out ready to show you".
I said we really had to go as I was going out that night to the theatre [this was actually true].
"oh i'll have to post it you then" he looked out of the window "it's raining - shouldn't you wait?"
"Oh, the van's just outside" Angela said.
We thanked him for a great afternoon. Daisy kissed him and after much cajoling said "bye bye inca Derry".
We drove away. "Well thank god for that, we won't have to visit again" I muttered. "Aww it was nice really" said Angela. Daisy was holding her flashing Halloween toy - and was asleep by the time we reached the Motorway.
© Kevin Donnellon - first published on Facebook 2013 and edited here 2018
Mother
30 June 2013
Having conversations with Mother these days is like being the listener of a monologue of a Samuel Beckett play ..... bizarrely, she even challenged Angela to an arm wrestle! "Hmm, shall I phone the ambulance now or wait until I actually hear her bones crack?" I idly wondered - but Angela let her win... twice! Not sure she should be encouraging the old woman's delusions, but what's the alternative; Angela getting prosecuted for GBH on an 84 year old woman? Angela has amazing gracious patience with her - I mostly carried on reading my book - Mother was so absorbed with talking about her past {mostly of her experiences of being evacuated in WWII and getting her first job at the age of 14 as a waitress in a city restaurant ..... we hear the same stuff week after week] that she didn't even notice.
Before she left she did her usual 'party trick' - this involves sticking small pieces of paper to her eyelids, nose and tongue. It terrified Daisy the first couple of times she did it - but now Daisy copies her, I'm sure just to humour her batty Nan .... maybe I should shove her on 'Britain's Got Talent' [I've seen worse stuff on it}. Mother adores Daisy though - but that's because she isn't talking properly yet and can't answer back.
© Kevin Donnellon - first published on Facebook 2013 and edited here 2018
2020 What A Shitty Year 2020
Words cannot express how frustrated I feel right now, but I'll give it a go anyway. You’ll find out why at the end, bear with me. This year has been absolutely terrible for most people in one way or another but I'll also be glad to see the back of it due to all the drama around my health, which I had mostly kept quiet about for a change! ;) [I didn't want to be too self-indulgent when everyone was suffering]. The first week in January I was in the anaesthetic room of Aintree hospital, all gowned up and prepared - I was about to undergo an operation for kidney stones [the last one being in 2014]. An hour later there must've been at least a dozen medical staff in that tiny room trying to get the anaesthetic in my veins. It's an extremely common problem for us Thalidomiders - just getting blood samples from us is also very much a hit and miss affair (that's the worst part of having type 2 diabetes). They even wheeled in a big machine which was a vein viewer, which proved to be useless. After the umpteenth attempt, I asked for gas [which is what they resorted to in 2014] but they said they only used it in absolute emergencies nowadays - I suspected that having sleep apnoea and being allergic to morphine was also a factor. After sticking needles in both hands, both feet, my chest and groin they eventually admitted defeat and sent me home. A brilliant doctor who works for the Thalidomide Trust, Dee Morrison, found a top specialist in urology who likes a challenge of awkward patients and he agreed to take me on. He is based in London. They also found a 'world class' anaesthetist who also agreed to be on the team, even though both of them normally worked in the private health sector. So mid-February I went by train to London with my nephew James who acted as my PA as I was still looking to replace my former one. I met both consultants that afternoon and they went through the entire procedure, the operation being the next day. The anaesthetist explained he was going to inject me in my neck (very few doctors risked this) and as a back-up he would give me an epidural which was just "a tiny needle at the bottom of your spine and you won’t feel a thing". I wasn't worried about this as many women have epidurals during childbirth, but I was nervous about getting injected in the neck.
The next morning the anaesthetist walked in with a young nurse. Her job was to make sure my head didn't move and to pass him the needle, the swabs and plaster tape et cetera. He was very abrupt and aggressive, barking orders or shouting at her if she didn't follow his exact commands. When he left the room, I apologised to the nurse and she said that quite a few consultants were often like that. Anyway he got the cannula in my neck and it was securely taped up (photos below).
An hour later I was wheeled on a trolley to the anaesthetic room where a team of five medical staff were gowned up and wearing masks. I was sitting on the trolley and the anaesthetist asked a colleague to stand in front of me and hold me by my shoulders in case I fell off. He assured me that this was the easy bit and he started prodding my back. He couldn't get the injection in and after about 20 minutes, which seemed like hours, he was getting very frustrated and kept saying "I've never failed yet, I'm not going to give in”. And I was thinking "I wish you bloody would”. I think his pride was hurt and his ego deflated; but his pain at failing would be nothing compared to the agony I was going through. Eventually he gave in and injected the anaesthetic in the cannula that was in my neck.
I woke from unconsciousness after the operation, the light was brilliant and a figure in white was talking to me in a soothing voice. In my groggy state I actually said something like "am I in heaven? are you an angel?". She told me I was in the recovery room and I'd just had an operation. I expect she's heard similar nonsense regularly from patients in her job. Later on the anaesthetist came to my room to see how I was. I felt okay but my back was very sore and bruised. He was very apologetic and said that during the operation they had taken x-rays of my spine. He noticed that the vertebrae at the bottom half was fused and that's why he couldn't get a needle in! Why the bloody hell didn't he take the x-rays BEFORE the operation! My urology consultant came in later and said the operation was largely successful, most of the kidney stones being blasted to dust by laser - but there was one stubborn kidney stone blocking the tube to my urethra and I was to come back in two weeks for another operation to finish it off. Anyway to cut a long story short the Thalidomide Trust doctors weren't happy about me going by train to London at the beginning of March due to the Covid pandemic. They found an accessible taxi and the driver was willing to drive all the way to London and take me home two days later. Again I went with my nephew Jim and the driver (a friendly guy called Kirk) brought along his wife for company.
This time there would be no attempts to give me an epidural thank goodness, but the anaesthetist was still going into my neck. This time he walked in with a male nurse and he was charming and polite to him. He didn't raise his voice to the male nurse (I'll let you guess why that might be). In the anaesthetic room he actually gave me gas as well as injecting into my neck! The second operation was declared a total success and all traces of kidney stones were gone and the blockage in the urethra was apparently removed. I left London just two days before the first lock down!
So ever since then I've struggled to pee properly - there's very little 'flow' and for a few weeks it was also very painful. Also, I had a constant feeling of ‘needing to go’, which kept me awake at night. For the first few days I put it down to recovering from the op. but after a while my GP suspected prostate problems. Again, the wonderful Dr. Dee at the Trust found a specialist in St. Helens - I really didn't want to go back to London. After giving a water sample he said I had an infection and he also put me on tablets [for life] which is a muscle relaxant to help the prostate - but thankfully, after examining me, I didn't have prostate cancer. After being on really strong antibiotics for six weeks the infection cleared up - it no longer hurts when I pee, the constant sensation of ‘needing to go’ has eased, but I still really have to push. The consultant requested a blood sample.
My new PA (also called Jim) went with me to Aintree hospital to give a blood sample. The phlebotomist naturally couldn't find a vein and she said "I might send you to Maxine in the elective care centre - she is brilliant as she trained me ". But first her colleague had a go and after continual prodding with the needle she couldn't get any blood either. Eventually I saw the wonderful Maxine, who did manage to find a vein, but the blood flowed like treacle and she only managed to fill a third of the test tube, but she thought [hoped] the lab would be satisfied.
At the next appointment at Saint Helens hospital I had a cystoscopy which is basically a camera that goes through my penis and then to the bladder, just using a local anaesthetic. They found lots of inflammation and red spots. They asked me to come back in two weeks to do the procedure again to see if the inflammation had gone down. They also said I might need a biopsy to see what was causing the blockage of my urethra. They said the biopsy was performed with a general anaesthetic!
Dr Dee amazingly got the agreement of the guy in London to travel to St. Helens if he was needed!
Last Monday I had the second cystoscopy - the good news being the inflammation had gone down and most of the angry spots had disappeared… the bad news that there was a blockage and some bleeding. The doctor said it might be the result of the operation in London! So they still need a biopsy - but they said they had a doctor who could do it with a local anaesthetic - “no worse than a bee sting” - but he only worked there on Wednesdays. But hopefully it will be before Xmas.
Yesterday I was called in to the local drop-in centre to see the diabetes team. But they only wanted a pin prick of blood. A young student nurse called Andy got the pin prick of blood easily - the blood sugar was normal! He wasn’t sure it was an accurate reading. Feeling confident i said “oh you can do another one if you like”, the second one was also a very low reading. Looking at the results he said he’d have thought i didn’t have diabetes. “So I’m cured then?” i asked with astonishment. “Oh no, once you have it you never get rid of it.” I replied “Hang on a minute, I saw a TV programme where people WERE cured of type2 diabetes”.
"No, they were probably pre-diabetic and treated just in time "he said confidently. "You have been diabetic for seven years so I'm afraid you're stuck with it ". I went in to see the senior diabetic nurse for a consultation and she said that it was good news and I must be eating sensibly – but she needed a full blood sample as last year I had a very low red blood cell count. I told her that Aintree hospital took a blood sample two weeks ago but when she checked the computer she said there was no record of it! I explained the difficulty of getting my bloods but she said “our Andy loves a new challenge”.
In the waiting room with Jim I asked him how likely it would be that the student nurse would get my blood. "Nah, not a chance "he laughed, being a witness to the fiasco at Aintree. I was feeling very nervous when Andy called me into his room. He was very methodical and took his time, after strapping my arm tightly he waited for a while and then carefully stuck in the butterfly needle. It only stung slightly and he said "I'll stop if it hurts“. i gritted my teeth “No, just do it" I replied without much hope. Within seconds though I saw an unusual sight the red liquid was flowing down the tube! He soon had a test tube filled with my blood. I was ecstatically happy and told him how wonderful he was. I even agreed to do an online evaluation – I gave him glowing feedback. The senior nurse was equally surprised and I drove home happy, both Jim and I amazed how easy that was.
Which brings me to today. This morning I'm sitting in a nice warm bath reading a book when the phone rang. I recognised the voice, it was the senior nurse at the diabetes team. She says "hello Kevin, do you know the blood sample you gave yesterday? " - "Oh yes and it was amazing Andy got it first time and he filled the tube!". The nurse said "well I'm afraid we need another one. The blood was clotted and the lab couldn’t use it. I’m very sorry!”
I don't know if the phial hadn't been sealed properly or it wasn't put it in the fridge or something, but I now have to go back Friday afternoon to get it done again. Andy will be doing it again – but I'm not optimistic that miracles can happen twice! :(
© Kevin Donnellon - published 2nd December 2020
written 2008
MY SUNDAYS
I have a beautiful fourteen year old female cat called Phantom. She has long black thick fur, fluffy white ‘boots’ on her paws and when she was a kitten she had a white chin and nose, with black fur covering her eyes like a mask – hence the name ‘Phantom’ as in the eponymous Opera. Her mask has ‘slipped’ over the years so her face is mostly back with a bit of white over her mouth. She’s still beautiful though and extremely spoiled and bad tempered if she doesn’t get her own way, just like me [I was going to say “just like her owner” but I prefer the term “animal companion” as I don’t believe humans should “own” fellow animals – I might expand on this in another blog, if the editor doesn’t sack me after this one!].
Phantom, or ‘Fanny’ as I affectionately call her [but when I’m speaking in the 3rd person (3rd animal?) about her I usually just say ‘my baby’] is a creature of habit. She has her own daily routines which if changed for any reason she becomes very discommoded.
For example, every weekday morning whilst I am eating my brekkie my long-suffering PA Pat [more of her later too!] hand-feeds ‘my baby’ tiny pieces of Bernard Mathews Honey Roast Turkey. This serves a most useful function i.e. my baby doesn’t bother me whilst I’m eating. Also after my shower I habitually scrape the waxy gunge out my ears with safety buds [yes, I can hear the cries from some of you now “you shouldn’t do that, it can damage your hearing!” – well I know that, so I use the extra large buds that don’t go in the inner ear bit –I already have a hearing impairment in that my right ear doesn’t work anyway. I can’t be bothered with fiddly whistling hearing aids as my left ear is fine and over the years have become an accomplished lip reader in noisy places. The only problem I have is sensing the direction of sound i.e. a student may be talking to me back-left of the lecture theatre whilst I’m looking forward-right to see who is trying to get my attention. That’s why I insist the students raise their hands to ask any questions – so it’s not just because I’m dictatorial and on one big power trip when I’m lecturing, just only partly!].
Where was I? Oh yeah waxy ears [forgive me, I often go off on different tangents] – my cat sits patiently on the Ottoman staring directly into my face as I’m scooping out the wax ………… now don’t read on if you feel a bit squeamish or you’ve just eaten! ……………. Eventually her patience is rewarded my me letting her lick the wax off the cotton buds. She does this with relish as if the wax tastes as heavenly as I think chocolate does. Her grandmother Trotsky enjoyed wax in the same way and I’ve spoken to other cat owners who verify that their cats love wax too. I’ve often considered marketing wax-flavoured cat food – it would sell in the millions! After I’m fully dressed and my hair is brushed then Pat brushes the cat – she loves the attention and howls if she doesn’t get it. “I’m not here for the cat you know!” Pat sometimes cries out when she feels harassed, “yes you are, it’s in your contract” I reply. “What bloody contract? I haven’t seen one and I’ve been here four years!”. When
Pat started she told me she liked dogs but wasn’t particularly fond of cats. But Fanny has grown on her and she loves her now [indeed, when she’s been off on leave and I ask her did she miss me she replies “no, but I missed Phantom!”]. I always stressed to her that it was a sackable offence if she shouted at the cat or said anything at all derogatory about Phantom. Lately she’s been testing this rule by saying thing’s like “that cat is a bloody nuisance” [when cleaning up her vomit after a particularly large fur-ball was regurgitated] – but she knows I won’t sack her; she’s 61 now and came back from retirement after I sacked a useless male PA [who ironically loved cats!], so I think she’s hoping I will sack her now!
Anyway, like the cat I am also a creature of habit. For example it puts me out for ages when the clocks go forwards or backwards an hour. I’ve never been institutionalised [thank goodness!!] apart from a few months when I left home at the age of 22 – the dire Leonard Cheshire home was full [hurrah!] so I lived in the ‘Brook Lea Hostel for the Mentally Handicapped’ as it was called in the not-so-progressive 1980’s [thankfully the place was shut down a few years ago]. It wasn’t so bad there, I lived in the staff quarters, learning to cook, dress myself etc just in time before an accessible flat become available to rent in Litherland [my great adventures of leaving home will be in another blog!].
When I wasn’t cooking my own meals, the staff would come in promptly at 5.30pm with whatever muck they were serving up to the inmates err sorry I meant ‘residents’ of the ‘hostel’. One evening Brenda [the officer-in-charge] came in with the tray. I looked at the clock and said in bewilderment “it’s only 5.15!”. She laughed and said “blimey, you’re becoming institutionalised!” – I’d only been there about two weeks, so I know how easily it is to become so.
One thing I never gave up after leaving home, was visiting my Mother every Sunday for the traditional roast [or at least after she started speaking to me again – for a whole year she remained incommunicado as she couldn’t get over the shock of her ‘baby’ leaving the nest – despite the fact that my five siblings had either fled or been chucked out years ago, including my younger sister Liz]. Anyway, we get on fine now – she never visits me, which is the way I like it as she would only interfere. So visiting her once a week removes any guilt about responsibility to one’s mother etc and it exemplifies how I’m also, like Phantom, a creature of habit.
Dinner is ready by 1pm prompt. Mother brings it in on a tray and plonks it I front of me on the padded pouffee. Whilst I’m eating we sit in silence whilst I watch Dimbleby on ITV – sometimes Mother interrupts with something like “people are pampered today, I was dragged out of a bombed cellar in the blitz and didn’t see a single counsellor or social worker……….” when I interject quickly “Mother shush! I’m trying to listen to this!” or she’d say; “I don’t know what country I’m living in any more………” but I interrupt her before she goes on her usual rant about illegal immigrants and Muslim fundamental terrorists or the price of a pint of milk or whatever has upset her this week in The Daily Mail.
Once Dimbleby has finished without too much interruption Mother clears away the plates and gives me the Mail On Sunday to read. This is usually tedious in the extreme but the columnist page of Peter Hitchens is usually good for a laugh [his basic philosophy is to turn the clock back to 1950 to an era which seems a bit like Heartbeat with a touch of The Archers]. Feminist/socialist writer Suzanne Moore has an interesting page too – but what the hell is she doing writing for the right-wing MoS?
After half an hour or so Mother goes upstairs to sleep. I usually carry on reading her papers – moving on to the Review pages – or I’ll put cushions on the floor and fall asleep myself, lazily digesting the dinner.
Mother gets up promptly at 4.30pm and says “what do you want to eat?” to which I usually reply “nothing, I’m still full – just a cup of tea will do”.
Then she’ll say “I’ve got jelly and ice cream in the fridge” to which I always reply “no thanks, I hate jelly”.
This scenario happens week after week. Mother still thinks I’m about 12 years old. No kidding. Once when I went to London on my own by train [hurrah for the new Virgin carriages – which actually have accessible loos! A far cry from the days when I used to be dumped n the Guards Van] I phoned her from a pub in Westminster.
“Who’s that?” the old woman asked. “It’s me Kevin, your son” I sighed. “Oh you sound all grown up like the boys!” she exclaimed. ‘The boys’ she referred to are my nephews!
Mother always asks “are you going out tonight?” to which I always reply in the negative, even if I am going out! “Oh that’s good because I think it’s going to rain tonight”. I just sigh and inwardly groan – I mean what the frig difference does rain make when I drive a big van? She’ll also use phrases which I’m sure is just to annoy me. Such as asking “how is that handicapped friend of yours?” – I always retort “you mean disabled friend, Mother!” – she always replies “oh I’m too old to change, all this politically correct nonsense. I remember in my day ………… blah blah bloody blah”.
We’ll watch the news on TV and I quickly turn it off before Songs of Praise! starts.
I’ll go home about 6.30pm – “drive carefully now and don’t drink!” - “ok Mother. Bye, thanks for the dinner. See you next week”.
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