Saturday, 29 October 2011

Tomorrow is another day

Last Friday Emmy’s Psychiatrist had a catch up meeting with us.

He’s a nice man with a very friendly name. He sounds like a character from a Beatrix Potter story.

He used a word that I don’t like though, one that I’ve hated and feared ever since Emily was diagnosed. That word is regression.

Regression can occur when all of the developmental skills your child gains disappear. A 3 year old in full meltdown is challenging but a 14 year old throwing you across a supermarket is something else. 

All parents are delighted when their children achieve their developmental milestones. It’s a step further down the road to an independent life.

No matter what level of ability your child has, our job as parents is to raise them right and let them go.

As Emmy has grown up I’ve spent a disproportionate amount of my life watching other people. She has a fascination for mirrors and shop windows, ponds and fountains. Basically, anything with a reflective surface.Sitting with her, sometimes for hours in the last decade, as she inspects reflections, I've have a chance to see the world of others pass by me, I’ve seen many elderly carers and their adult disabled children.

So as the Psychiatrist talked about the fact that Emmy was regressing and gently raised the subject of residential schools, I listened and folded my arms and smiled and slammed the shutters on the metaphorical queue of feelings waiting to be fed.

I can intellectualise it. I’m fierce about it. I have no right to be over protective. I have no right to wrap her up and rob her of her experiences. I know that we won’t live forever. I know that Emmy must be given the freedom to live her life.

I know this, I believe this, that’s why I’ve always fought for respite and encourage as many parents as I can to do the same. It’s also why I campaign to change attitudes towards disabled people in an effort to reduce stigma and bullying.

Emmy by virtue of her needs will have a life lived at the behest of others. Following in the main, an agenda dictated by others. This is the reality. I’d be being a bad mother not a good one if I stood in the way of this happening when she’s ready.

For other people in my situation society frowns on the reality we are faced with. Good people have to make this choice everyday. Loving parents devoted and kind are judged by other parents blessed with much easier lives and found wanting.

So that’s been my struggle for the last seven days. As we know heartbreak isn’t an intellectual pursuit.

Friday, 21 October 2011

When Nicky 'met' Ricky



Photo credit-rickygervais.com


Today Ricky Gervais phoned me to explain his use of the word "mong" on Twitter. 
He didn't have to or answer any of the questions I subsequently asked him on Twitter.
Here is the "Twinterview" The 140 character limit explains the short replies.


Ricky Gervais-A very public thank you for your kind, rational and understanding words in private.


NC-Thank you for getting in touch. Do you mind if I ask you a couple of things? Nik


Ricky Gervais-Ask away.


NC-I now understand that you didn't and wouldn't intentionally hurt anyone. Do you understand why people got upset by it ?


Ricky Gervais-I do now. Never dreamed that idiots still use that word aimed at people with Down's Syndrome. Still find it hard to believe


NC-How has the response to your use of it online and in the press made you feel ?


Ricky Gervais-A mixture of confusion, anger, terror and disappointment. But mostly naive. Never meant the word like that and never word.


NC-Some of your followers have attacked people like me for criticising you over this do you condone this behaviour?


Ricky Gervais-Definitely not - reason I contacted you to be honest. The hate mail I had was psychotic and wouldn't wish that on anyone.

Ricky Gervais-What do you think of how the press have portrayed me, out of interest?


NC-I think that had I not spoken to you,I would have believed that you were a bully.The tweets seemed out of step with your work 


Ricky Gervais-Cheers. Understandable Using that word to mean DS WOULD be bullying. I'm glad people now realise I'm an idiot instead. Ha ha


NC-Many people have been confused by your tweets to anyone who has been hurt by them what would you say?


Ricky Gervais-Well all I can do is apologise and hope they don't confuse those people's views with mine. (meeting now back in an hour)


Ricky Gervais-This is better than Frost and Nixon by the way. Speak later


****************


Ricky Gervais-And we're back. (Sweaty, but raring to go)


NC-hello again.Aside from the words you were using you also posted photo's pulling faces.Was that supposed to be someone disabled?


Ricky Gervais-No. The point is to look as hideous as possible without the use of props. Not a great art form I'll admit. Ha ha


Ricky Gervais-Interestingly chat shows and newspapers have shown them many times. but comedy is about timing I guess. Whoops.


NC-You have adopted a new word in place of your old one people might worry that it's similar to mongol.How do you respond?


Ricky Gervais-Yes it seems even a brand new made up word with no history can cause offence. I wanted to show that a word needs intent.


NC-I've seen the youtube clips of your character Derek Noakes. Is he supposed to be a man with a learning disability?


Ricky Gervais-Hello sorry. Long bath watching "Pointless" Can I answer this question on email then you can post it? I don't know how. Ha


Ricky Gervais-Can't do it in 140 characters. Writing now


Image-Ricky Gervis in "Derek"  photograph: C4
Ricky Gervais emailed response:
"I've never thought of Derek as disabled per se. Definitely nothing specific. Not Down's Syndrome, Autistic or someone with mental health problems.
He's certainly "different". But when does a bit weird become an official disability? it's ambiguous and he's certainly an outsider. He's based on some of the strange people that collect autographs or train spot (Oh dear now I'm really in trouble) but not in a sneery way. I love Derek. He's funny, happy, empowered and absolutely charming.
I guess I've crossed a nerd with a child.
i think in the present climate people will assume this has to be cruel because he's not the "smartest tool in the box" but it's not at all. We could go back and question many comedy characters. What's Mr Bean for christ sake? DP Gumby? Everyone in The League of Gentleman? They're "weird" sure but "weird" people can't help who they are any more than any one with any form of learning disabilities."

Monday, 17 October 2011

Was it something I typed?

Ah twitter how do I love thee let me count the ways.

Whether you on Twitter during a national event like a Royal Wedding, an unreported protest march, The X factor,  a party conference or pretty much anywhere Gazza may go with a fishing rod, some cans and a bucket of Kentucky fried Chicken, being on Twitter with tweets and hashtags flying makes it more enjoyable.

There are downsides obviously such is the internet but in the main it’s a positively functioning relationship.

There are also the added benefits of the great, the good, the obscure, the funny and the kind.

And celebrities.

In the olden days of the wheezing and turgidly slow snail mail, metaphorically reaching out and touching the object of your affection was a slow business. Yet now anyone with a smart phone can send a tweet to a star and if they’re lucky they will get a reply. Sometimes it’s actually them.

Sometimes it isn’t.

But the whole point is that they are perceived to be accessible. This has taken fandom to a whole new level.

I’m not immune. I’ve sent fan mail, I’ve sent email and I’ve tweeted stars. But it’s the aspect of the super fan, the fan of fans, the vicious fan, that I’m thinking of as I type this.

You see that tsunami of love if handled properly can be tamed and managed and sent replete with it’s awesome power back the other way.

It’s a win, win. You the star remain mute yet unaffected or you may reply with dignified restraint and if you’re big enough, if your follower count is high enough the fans do the rest.

Hailed as one, the flying monkeys leap into the air and travel malevolently to the object of their venom. It could be a critic or a journalist or a disability rights campaigner.

They may have just be doing their job or pointing out a fact or asking for reason. It really doesn’t matter what their motivation is. Their motivation ceases to be a mitigating or relevant factor.

What is at stake is the perceived harm done to their beloved.

So they must pay.

Their beloved must know that they are paying though. They must know that this is a crusade on their behalf so their name is added to the comments :


@haplesscritic Um like you don’t know anything fuck off you cunt @mybelovedstar

The addition of the star name reclines like a kiss at the bottom of a poison pen letter.

The star thoroughly satiated that their work has been done without them having to lift an immaculately manicured finger then tweets lukewarm rebuke and gentle caution.

Like every bullying gang ringleader calling their henchmen to heel.

The great stars reply to critics either in a muted way or not at all. The greatest example of a response is Charlie Brooker who retains the comment and replies, but withholds the username.
Win Win.

People fall out and misinterpret and it will always be this way with written communication. There is little room for nuance in 140 characters, but going “cunting” with a pack, makes you look like a fool and  ultimately seems to undermine the whole point of Twitter to me.

Pampered preening stars turning Twitter into an anti social network seems a little sad.

Sunday, 16 October 2011

What does the Word "mong" mean?

In order to alleviate any lingering confusion over what words mean here is the Terminology Guide from the Down's Syndrome Association. They are widely regarded as the authority on language given their extensive knowledge and membership data base. Don't use the word unless you want to be seen as being offensive, would be my advice.

Best Nik xx



Terminology Guide:
Down’s syndrome - What to say (and not to say)

When speaking about issues relating to Down’s syndrome in a way that is both factually accurate and inoffensive to the general public, including people with Down’s syndrome and their families please consider the table below.

We are sure you share our concerns so please take a minute to check that your copy is in line with the following language guidelines and that you are not perpetuating any myths about the condition.


DON'T SAY
DO SAY
Mongol or Mong
Person/baby/child with Down's syndrome
Suffers from OR is a victim of Down's syndrome
Has Down's Syndrome
A Down's baby/person/child
A person/baby/child with Down's syndrome or who has Down's syndrome
Retarded/mentally handicapped/backward
           
Learning disability
Disease/illness/handicap
Condition OR genetic condition
Down’s (as an abbreviation)
DS (as an abbreviation if necessary)

MYTHS
FACTS
People with Down's syndrome don't live very long.
Today, people with Down's syndrome can look forward to a life of 60 years plus.
Only older mothers have babies with Down's syndrome.
Although older mothers have a higher individual chance of having a baby with Down's syndrome, more are born to younger mothers, reflecting the higher birth rate in this age group.
People with Down's syndrome cannot achieve normal life goals.
With the right support, they can. The vast majority of people with Down's syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives.
People with Down's syndrome all look the same.
There are certain physical characteristics that can occur. People with Down's syndrome can have all of them or none. A person with Down's syndrome will always look more like his or her close family than someone else with the condition.
People with Down's syndrome are always happy and affectionate.
We are all individuals and people with Down's syndrome are no different to anyone else in their character traits and varying moods.



If have any questions about anything to do with Down’s Syndrome please contact the Down’s Syndrome Association on 0845 230 0732 

Saturday, 15 October 2011

The Atheist in the room and God bless us everyone

Well our Christmas tree is up. Yes I know it’s the 15th of October and that we haven’t even had Halloween yet but Emily has had a difficult couple of years since she had a seizure two Christmases ago so we saw her keenness to get a tree as a good sign.

It wasn’t a lengthy seizure her last one lasted a terrifyingly long twelve minutes. Due deference to all those who have longer and more serious episodes. That must be unimaginable; this was bad enough and left her unable to speak clearly for two days.

It does however mean we will be running the gauntlet of the disapprovers.
I have my responses prepared.

1) Yes I do know it’s only October.
2) Yes I know we haven’t even had Halloween yet.
3) Yes it is shocking that Christmas gets earlier every year and that this this takes the biscuit.

I won’t say this with words though. I’ll smile and say something a lot less confrontational and a lot more ameliorating and end up with a Herbert Lom honouring eye twitch by Christmas Day.

We’re also not quite at her therapeutic dose for her anti-depressants and her violence is really starting to take it’s toll on me after 20 months.

This isn’t a parent whinge just a statement of fact. I understand why and I know it’s not her fault so that’s that. To be 14 is tough enough let alone being learning disabled with Autism.

Anyway the weekends are really hard so what her refusing school and respite and my coccyx still healing after being lobbed across Sainsbutys in the summer I’m probably feeling a little oversensitive.

Tonight was very bad and once the meltdown had settled sufficiently to get her epilepsy meds into her we all headed out grim faced to go to Sainsbury’s.

It’s not wise clearly but it’s her only trip anywhere. We’d negotiated the demands and drawn up a list and were determined to follow the list to the letter. To her credit and after a short chat with a community policeman (willing to try anything) who was very nice we got it sorted.

Heading to the car a woman got out of her car which was parked in a disabled bay. She limped as she walked away but by the time she reached the entrance she was walking normally again. I checked her car parked next to ours and surprise surprise (not) there was no badge.

This really pisses me off.

When you think what is being done to disabled people the length and breadth of our “civilised” nation currently deemed scroungers and being stripped of their crucial benefits; people like that woman are a fine example of “people” who need to have a word with themselves.

Granted there were other spaces, granted she may have had a hidden disability but badges are hard to get and if you’re disabled or a carer you always display your badge. You don’t want to be one of those people. Those people are foul.

So no she wasn’t disabled. She was just lazy.

I think what it demonstrated to me again is just how far from understanding, compassion and tolerance we as a society have fallen as the targets de jour of the government and their pals in the right wing media are now disabled people. When did that happen?

Anyway I didn’t say anything this time. I didn’t trust myself. When you’re on the edge of losing your temper it only takes a little thing. I have to keep calm and patient so much at home that an opportunity to shout in the face of a selfish asshole may prove too tempting.

Plus I think it would possibly have sent the wrong message to Emily. It would have been mortifying to have found myself under arrest by that lovely community support officer.

Thursday, 13 October 2011

Guest Blog-London Deaf Learners

PRESS RELEASE

DATE: 10/10/11

DEAF STUDENTS GET HELP TO BOOST WORKPLACE EQUALITY

LONDON’S Deaf students are being given a helping hand to make the leap into higher education so they can join the next generation of business leaders.

Currently Deaf students make up just 0.17 per cent of all UK university applicants and for those that do graduate unemployment levels have doubled in the last two years.

Often the application process for university and the workplace is a minefield for Deaf people where they are held back by a lack of sign language interpreters and a poor understanding of the needs of the hearing impaired.

Now Abdisalan Gas, founder of Deaf Unity, is launching London Deaf Learners to help the capital’s young Deaf community overcome these barriers and fulfil their true potential.

Abdi, 27, explained his motivation for setting up the new initiative: “There are a lot of incredibly smart Deaf people in this city but they are denied the opportunity of a place at university or a good job because the interview process is seldom set up with Deaf people in mind – for instance the provision of interpreters can be an incredibly complex process.

“A Deaf person has to fight for access or adjustment but they fear that speaking up will be interpreted as being a trouble maker seeking an unfair advantage.

“As a consequence many lack the confidence to apply and they massively sell themselves short. As a Deaf person myself, when I applied to study at university I found the process stressful and bewildering.”

Skill training workshops available through London Deaf Learners will include interview technique coaching, CV clinics, presentation training and mentoring sessions.

The new scheme will be unveiled on October 20th at City Hall. It is supported by the London Sustainable Development Commission’s London Leaders programme, which is backed by the Mayor of London, Boris Johnson.

Boris Johnson said: "This is a great project from one of our London Leaders. I look forward to seeing this programme support Deaf Londoners into university and capitalise on all the opportunities our great city has to offer."

Deaf Unity is also forming a London-wide Deaf alumni network which will act as a resource for any members of the Deaf community facing discrimination or barriers to employment.

Abdi said: “We need to show that there is a demand for change so we are calling on the Deaf community to get involved and spread the word about the project.”

For more information on London Deaf Learners and how to get involved visit

Anyone wishing to attend the launch in October can register here:

For media enquiries contact Gemma Keogh, Arc Seven Communications, gemma.keogh@arcseven.co.uk, t - 01373 301904, m – 07861222496

ENDS

Notes to Editors

About Deaf Unity

· Deaf Unity aims to improve the quality of life of Deaf people in the UK and worldwide.

· Deaf Unity aims to raise awareness of Deaf culture and language and advocate in the interests of Deaf people to eliminate disadvantage and suffering.

· Abdi Gas was appointed as a London Leader of 2011, in recognition of Deaf Unity and this project’s aim to meet the LDSC’s sustainable development priorities.

Saturday, 8 October 2011

Out of the Loop

Who doesn’t love The Thick of It?

There aren't enough good words to describe it adequately in the English language. I don’t speak any other languages so I’ll have to leave it there but suffice to say that I love it.

I also love many people who just happen to be on the autistic spectrum. Now there are many challenges in life lived with autism but I happen to be of the opinion that autism gives us who aren’t on the spectrum much to be grateful for. Art, poetry, literature scientific excellence computer wizardry and the elements of the wonder that is the internet.

There is a theory that Bill Gates is on the Autistic spectrum. I can neither confirm nor deny this but I like to think it’s true. With everything he has achieved, with everything he is using his great wealth to improve he is an amazing ambassador for the condition.

Anyway I digress but I think I’ve made my point. I wouldn’t dream of claiming to know everything about autism, even academics studying the condition for decades wouldn’t attempt to do that.

I do know that it is a massively misunderstood and misrepresented condition. I’ve seen from my children’s teachers, I seen it from their peers. I’ve seen it from people on the streets I’ve seen it from medical professionals and social workers. I’ve seen it from my own friends and extended family. People don’t really understand and even if they have some knowledge they still don’t make many allowances.

In short I’ve seen the pervasive stubborn, offensive and just plain ignorant misunderstanding of autism, which leads us towards stigma and bullying. When I see disablism I challenge it. No matter who you are, or more importantly who you think you are.

It was quite vogue a few years ago to use autism as an abusive belittling term. People like the great writer Nick Hornby was often quoted in the press brilliantly responding to some politician or actor using the new cool epithet for socially inept or aggressive and urging that this playground name-calling stop.

When it comes to name calling no-one does it better than Malcom Tucker. He’s written so brilliantly so vividly as are all of the characters in the series. He is the spin doctor to end them all and the language he uses is the language of an angry, highly articulate H bomb.

He is fictional.

If he or any of the other characters use epithets for disability or impairments within the show they are doing so as characters. They don’t represent anything other than the mythical situation they portray. The characters don’t speak for the actors, the actors speak the words of the writers.

The audience know this and if they don’t they should.

So I watch and enjoy and recognise the difference.

The other night I had some time and decided to watch the special features. I hold my hand up and cry saddo because I am. My theory is don’t put the special features on there unless you want us saddo’s to watch them.

You do, so we will.

I watched Rebecca Front and Joanne Scanlan talking about Malcom Tucker’s nemesis. Steve Fleming, the other spin doctor brought in seemingly to replace Malcom.

He’s foul, so I completely agreed with their assessment of him as being : A bullshitter, fake, unauthentic, smarmy, peculiar, kissy kissy and unctuous.

Then it cut to an interview with Adam Tandy the programmes producer. Not an actor pretending to be a producer.

This is when the wheels fell off my enjoyment wagon.

Adam Tandy reclining nonchalantly in badge and Lanyard like the BBC guy he is said this:

“We know that Malcolm can be aggressive but charming whereas Steve Fleming is the opposite. He would like to think that he is essentially charming although it’s a pretty AUTISTIC form of charm… “

WOAH WHAT?

(rewind)

“He would like to think that he is essentially charming although it’s a pretty autistic form of charm”.

(pause turn up volume rewind)

HE WOULD LIKE TO THINK HE”S CHARMING BUT IT”S A PRETTY AUTISTIC FORM OF CHARM.

(pause) (play) “but if he’s confronted he’s…it’s like..he’s very passive aggressive you know he will turn and snap at some point.”

WHAT? So having established from the other actors just how foul Steve Fleming is just how unpleasant and snide and oily and devious he is, the final tin lidding coup de grace is the cod diagnosis of AUTISM?

Like everything that went before wasn’t enough to paint a little picture. Apart from which, people with Autism may be many things but passive aggressive isn’t one of them. In my experience they can be passive and they can be aggressive but not passive aggressive ever.

There is no logic to that. The reason so many people with autism have difficulty in social situations with neurotypical people is precisely the fact that so many neurotypical people are passive aggressive and it makes reading the situation impossible and stressful. Also people with autism often have a real fear of social situations not something Steve Fleming seems to suffer from he’s just a dick.

I sat and seethed for a while and then I remembered that because of people with autism spending hours in dark rooms resurfacing the information superhighway we now have things like Twitter.

I had a way of asking the person what the thinking was behind the throwaway soundbite. I needn’t wait to relay my complaint through bored TV call handlers or admin clerks tasked with listening to infuriated viewers only to reach the dead end of an unattributed, hard copy non apology, apology/denial.

I got on Twitter and I asked Adam Tandy directly

@mrsnickyclarknicky clark
@adamtandy Hi just watching The Thick of It special features- You describe Steve Fleming as having "A pretty autistic form of charm" Why? .

Later that evening to his credit he replied asking for my email address as he wanted to explain his comment.

I thought that as his comment was accessible to everyone who has a copy of the DVD then his explanation should be too, but I felt it only fair to allow him to respond. So I sent it to him by DM.

Today whilst standing waiting for a lift that Emily would be happy to ride in (IE one that didn’t contain other people after a very difficult shopping trip that had followed a night of no sleep and her seriously on the edge of a stress induced seizure) I got Adam Tandy’s response.

I’m sharing it now probably because it’s annoyed me in it’s patronising “mansplaining” but also because he completely and spectacularly missed the point. Also because this shouldn’t get swept under anymore BBC embossed carpets.

Autism isn’t a coverall for horrible or unpleasant. It’s not a condition to be equated with unctuous, or bullshitter or unauthentic. The whole beauty about people with Autism is their unfailing honesty and LACK of passive aggression. If you don’t understand the word use another and if all else fails buy a fucking thesaurus.

Anyway this is his response.

Hello there.

I'm sorry not to respond before the weekend, but work has been hectic and my Twitter client managed to spontaneously delete the direct message from you; maybe I shouldn't have taken your advice and unfollowed you so promptly.

Anyway, (thanks to the tweet cache in my other computer...) here are the relevant tweets from your Twitter...

@mrsnickyclarknicky clark
@adamtandy Hi just watching The Thick of It special features- You describe Steve Fleming as having "A pretty autistic form of charm" Why?


@mrsnickyclarknicky clark
I mean seriously did a fucking memo go out to people in the media if in doubt use disability as a cover all negative term?


I hope the following answers the first of your questions.

Steve Fleming was created to be Malcolm's nemesis in The Thick of It but, when developing his character in conversation with actor David Haig, we wanted to make him more than just a one-shot villain or a clone of Malcolm. We wanted to give Steve enough of a rounded character to make him real enough for the actor to to be able to build on the part with improvisation. So, like all the characters in The Thick Of It, there's a fairly well-developed back-story, and character.

Steve's manner with people - his lack of interpersonal skills - is flagged up throughout the script by other characters ("Obsessive Repulsive Disorder", says Olly). And his efforts at compliments and jokes have a "studied" quality to them which usually backfire ("Your face looks quite gaunt and muscly"). They don't find him easy to be with. Look at the way Nicola Murray freezes up when hugged by Steve. And Steve always fails to pick up on this, and continues regardless. Likewise, his own acknowledgement of his difficulty in this area is indicative of his frustrations in dealing with people. (e.g. "I did get the joke by the way") When he loses control of a situation he becomes aggressive, throwing tantrums. He gets out of his depth in conversational banter very quickly and resorts to anger, ("We're in government..." ventures Olly, in the DoSAC meeting at the start of episode 8, prompting a violent outburst from Steve...).

Now, I am absolutely not going to pretend I am an expert in autism or even properly appreciate the wide spectrum of autism-related disorders but I would contend that it is acceptable to describe elements of Steve's behaviour as "autistic". That is not to say that he would be diagnosed as such by a doctor, but in the dictionary sense of the word of having--

difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

-- in the same way that I might describe someone's involuntary uncontrolled muscle movement as "spastic" I suppose. I am not name-calling here, merely describing, and I am (a bit) offended that you think I might casually throw those terms around as a matter of habit whenever I feel like abusing someone. Or, indeed to be lumped together with all the "people in the media", as if we were some kind of separate (lower) order of humanity. We are all different. We are all individuals.

Anyway, I'm sorry you felt cross enough to tweet about this and I'm even more sorry that it spoiled your enjoyment of our programme which, with all things considered, is intended to be a comedy.
Kind regards
Adam Tandy.


He may be a lovely man who knows. He might give to charity and be lovely to his family and generous to his friends. But the measure of people is in the treatment of those we don’t have to be nice to.

His reply reads as though he is arrogant sadly. It made me tired to think he was offended by me. It made me sad to think that his response was one of predictable defensive denial.

Monday, 3 October 2011

My brother Michael




On the 25th December 1978 just before 4am  my brother Michael asked Mum if he could have some more iced water. The men's ward was quiet as everyone was sleeping and so as mum walked back to his bed with his drink, she heard him die. He was 17 years old.

Michael  had been born in Kenya on 3rd October 1961. I met him 5 years later when he and my sister were brought to the Belfast Hospital where I was born. Apparently my Mum said ‘There you are Michael you have someone to boss around now.” according to my Mum he said “and someone to kiss”

The fact was that the reverse was actually true. I’m very bossy, and hug and kiss everyone. Very tactile me, it was always commented on particularly because everyone else in my family was so reserved. We’ve since learned that in fact it’s likely that everyone I grew up with is on the Autistic Spectrum to a greater or lesser degree, except me.

My brother was tall and blond and tanned whilst my sister and I are medium height, dark and pale. We don’t tan so much as freckle or burn. He exuded physical perfection ,which was why when the symptoms of the heart and lung condition which would kill him, first surfaced it was missed.

The first time I noticed anything was wrong was our last holiday with my Dad still with us. We were walking and my brother kept stopping to rest. Then he gave up altogether. He went back to school and during a run in full CCF kit he’d started coughing up blood. Then he passed out.

The other boys found this “weakness” in such a handsome threat, a rich hunting ground for cruelty.They derived pleasure from letting him know that.

He went to the Dr who detected a heart murmur and referred him for tests.

My Father had left in the autumn before Michael was diagnosed and so Mike did what he felt he had to do. He hid his symptoms. Fighting his exhaustion and breathlessness he dug the garden and emptied the bins and cut the grass. All the things my dad had done.

He endured two cardiac catheterisations and when the Consultant got the results the diagnosis was primary pulmonary hypertension and the prognosis was 10-15 years of eventual decline then death. They were doing some trials for some new drugs and procedures and Mike was included for the trial which was to begin in January 1979. Had he lived he might have had a heart and lung transplant.

Mum was travelling to her job as a health visitor and Mike by now needing to be off school would get up and dressed before she left and then spend the rest of the day in bed. Then just before she was due home he would get up and act as though he had been up all day. Mum asked for time off after the diagnosis. Her manager refused.

Because I was twelve and because this was the 70’s nobody told me anything except the bare minimum. I knew he was in bed a lot and I knew he seemed much less patient than normal but aside from that nothing much. Apart from one conversation.

He said “I know you don’t like boys much at the moment but one day you will. Make sure you marry someone who loves you and looks out for you as much as I do”

I thought that was an odd thing to say at the time because he usually found me annoying plus he always beat me in top trumps and chess and everything really.I think he'd be pleased though because I took his advice. He was as usual right.

Then just before Christmas he got a cold. He’d gone into town to buy Christmas presents. By Mum’s birthday 23rd December he couldn’t even sit up in bed to play chess with me anymore. I remember seeing the board with a single spatter of his blood.

The thing that drove him crazy was not being able to play his guitar. He had taken it up and after 6 months his guitar teacher recommended that he have master-classes with legendary classical guitarist Segovia. Listening to you him was one of my best and clearest memories, especially the piece, Asturias which I've linked to.

The rest is a little hazy. Apparently this was shock. I remember them carrying him down the stairs by stretcher. I remember waking up at 4am on Christmas Day because I was sleeping in my mum's bed and the time was on the alarm clock.

I remember my sister waking me up and telling me it was Christmas Day and giving me my presents in Mum's room. I remember walking downstairs and seeing my mum. I remember collapsing when my mum told me she was sorry but that Michael had died.She was still wearing her coat. I remember that he bought me a paint set because I didn’t speak for 48 hours and just painted.

What I didn’t remember was seeing him for the last time in hospital. My sister told me last year. I had completely blanked it out. Apparently I’d been crying so maybe that’s why.

Anyway he’d be fifty today. It would have been fifty years like the 17 he lived. With heart and compassion and integrity and wit and wisdom. There is a tendency to deify those who die young, to imbue the years lived with unreasonable assertions of goodness.I'm not doing that.

My brother was one of the best people I ever met. Happy birthday Mike.