Paces

The emotions of labels: a parent's tale

Some writing just gets to the heart of it. The impact of it. The emotions of labels.Doesn't matter what impairment your child has.

Violet is herself visually impaired, a "Mum of 2, wife of one.  Disability campaigner. Novice Blogger and tweeter and expert chocolate eater!" she says. One of her children has Asperger's syndrome. Her blog post "High Functioning Autism vs Aspergers: The emotions of labels" is about her response as a Mum. 

Look, here's an extract, but just take a moment to go and read it for yourself.

On the way home on the bus it all suddenly hit me.  It was real, written in black and white. I realised it would never go away.  I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour.  I didn’t feel the relief I had expected to feel.  That, in itself, caused feelings of confusion.  I felt sad and upset.  I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.

On top of all those feelings I felt guilty and confused about feeling the way I did.  I want to talk a bit about the guilt.  I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.

As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc.  .... 

So, why did I feel sad?  B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label.  Why did I feel like my world had been turned upside down?  I was still his Mum, I shouldn’t be feeling sorry for him or myself.  Disabled people didn’t want pity.  As a disabled person he deserved rights and respect not pity and sadness.  At that time I did feel sad and because I felt sad I felt guilty.

Thanks to Special Needs Jungle for drawing my attention to Violet's terrific piece.

Fulfilling potential or potential unfulfilled? Discovering Jenny Morris's blog

Delighted this evening to have stumbled across Jenny Morris's blog

If I am correct, this must be the sameJenny Morris who wrote the 1999 Joseph Rowntree research publication "Hurtling into a Void?", which inspired us to call Paces' young adult group "Leaping the Void".

Here's an extract from her latet posting "Fulfilling potential or potential unfulfilled?" 

Two funding streams, aimed at helping disabled people into and to keep paid employment, are part of the Right to Control trailblazers.  Disabled people are thus being given control over resources they are entitled to under the Work Choice programme (the specialist employment programme) and Access to Work.  Such experiences must be in stark contrast to those disabled people receiving services from the Work Programme where it is Job Centre Plus civil servants and service providers such as A4e who are considered to be the ‘experts’ as to how best to help people into work. Far from being in control over how to use resources, disabled people in these situations face losing their benefits if they don’t do what they are told to do (including unpaid work for unlimited periods).

Hanif Kureishi can't skip .... but he is an artist of his own life #CondEd

Here's an article I think most of us in Conductive Education will understand. Unfortunately, it's in yesterday's Sunday Times Magazine section, behind Rupert's paywall: Think and You'll Miss It by writer Hanif Kureishi.

He begins with an amusing admission that, having recently tried, he cannot skip with a rope; his 13-year old son, on the other hand, to whom he handed the rope, "did the whole thing backwards, singing a Beatles song".

Which leads him shortly to:

"My son who can skip and sing, found it difficult for a long time, to read and write at the level of others his age. At primary school he was castigated, even insulted and punished for his inability. After the experts were called in, he was investigated and berated some more, and finally labelled dyslexic and dyspraxic.

"There is, at least, some relief in diagnosis. One is not alone, joining a community of others who have, it appears, a similar condition. But can the inability to do a particular thing be described as a "condition" at all. Would the fact that I can't do the tango, read music or speak Russian be considered a "condition"? Is it a failure of my development? Am I ill?"

He then considers that he was "not much impressed by the imagination and curiosity of the experts" who used an "awkward, objectifying language" and quickly began to talk "fashionably, about brains and chemicals", observing that "Biological determinism is one of psychology's ugliest evasions, removing the poetic human from any issue." ... "What I'm talking about here, I believe, is the attempted standardisation of a human being, and of a notion of achievement that is limited, prescriptive and bullying".

I doubt I can do justice to the main part of his article, but here goes. An 18-year old known to Kureishi, mentioned having been given Ritalin to help him focus, "his mind, he said, kept going off in numerous directions". Rejecting Kureishi's suggestions for alternative causes, the young man, says Kureishi asked himi if "given the choice, I wouldn't prefer to focus at will". This leads Kureishi to consider his own teenage years when "I wanted to be good at things, but, like the Ritalin boy, I fell badly behind at school, finding myself not only unable to learn but at the bottom of my class".

He then goes on to make a powerful case for the value of distraction, provided that the individual be able to "distinguish between creative and destructive distractions by the sort of taste they leave ... and this can only work if he is, as much as possible, in good communication with himself - if he is, as it were, on his own side, caring for himself imaginatively, an artist of his own life."

"There might be more to our distractions than we realised we knew. We might need to be irresponsible. But to follow a distraction requires independence and disobedience; there will be anxiety in not finishing something, in looking away, or in not looking where others prefer you."

It's a challenging thought.

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All the italics here are mine.

 

Yet another assessment Yet another assessment another assessment another assessment

"vkkdmmg gkr  glmkkk kkfmnkv   gjgkf nf aksnc v kdvnvkbkmvv askkcn fnv  bh cnb dnq  4 5 gkc  vjv djkdkv cnfnsj fjjvn nvjjfm dnfh  gnnbx dnncbv f nmvvmv kcjv   nnvj"

No. You've not misread. Your computer hasn't suddenly failed. I wanted to show you what the screen typically looks like when our Sarah uses her laptop. Sarah will sit and type keys randomly. Occasionally, she might ask how do something: how do you spell this or that, for instance. She likes to send emails and asks for help. Her Mum or I will do the typing to her imperfect dictation. Then she will press the key to "send". She likes her Mum's iPad, especially a drawing app. She knows all the ring-tones on both our phones and, because she has amazing hearing, regularly hears them before we do, especially if the phone is in the other room. You've got a text, she'll say, or someone's calling you - knowing whether it's her mum's or her dad's phone. She likes phones - and can manage quite long conversations on them - particularly with friends or family who know her well. She's been able to do that for quite a while.

The letter said there would be a phone call first. Then a questionnaire. Then they would determine if Sarah was fit to work. If the questionnaire was not properly completed, benefits might be "affected".  "cbvbv  fjkg f kfkkg  fjfjg  nnvkvk", Sarah might say to that.

So, of course, the letter was addressed to Sarah's Mum, whose telephone manner is restrained and polite (important as "they" are recording the phone call for legal purposes) and whose keyboard and general questionnaire-completing skills are excellent.  Actually, I'm not quite sure what the telephone call was for. Whatever it was, the person calling might has well have been one of those robotic voices the local hospital uses to check you've remembered your appointment, so little did it matter what Sarah's Mum said or asked; the caller just wanted to send her questionnaire.

An assessment. Yet another assessment. Another opportunity to demonstrate what our lovely, loving, caring daughter cannot do. Well, she cannot write and she cannot read and she can't count past 10 most days and she can't cross the road on her own and she can't get buses on her own, or dress herself or clean her teeth or cook a meal .. not even put a kettle on to make a drink. But on Sunday when her Gran had gone up to bed, she thought she heard her Gran choking and called her Mum who was in the kitchen "Nanny needs you. Quickly. Quickly, Nanny needs you". Sarah knows about strange throat noises and choking - she's been around other people of her age for whom such sounds are danger signs, help is needed. (No panic. The strange throat sound her Nanny was making in the bathroom was using some antiseptic throat wash. All was well, her Mum assured Sarah.)

Prove to me what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do ....what? Again? .... Again? She's 29 years old. Do "they" not know that she's had Disability Living Allowance at the highest level since she was three? That throughout her school years she was assessed as having special educational needs? That she is a person with spastic quadraplegia? That she has had assessment after assessment?

How many more assessments will she have to have during the rest of her life? How many more people will assess her, who themselves live in their own homes, raise their own families, go on holidays of their choice, enjoy a social life with friends of their own, because they earn their salaries to pay for it all because there are countless peope like Sarah who cannot. 

People who are in work because Sarah cannot work. Cannot.

People asking utterly unnecessary questions; requiring utterly predictable answers in questionnaires; to reach absolutely foregone conclusions; causing distress to already stressed families.

So, yet another assessment. Yet another assessment another assessment another assessment xxncnf, jdfhf  dhfhf  djdjfjf fnfjvjvvif jcdjcvjvnf v vjvjjvjvnv

 

 

The blink that says: I’m disabled but happy.

"Rose did not utter a word for the duration of her stay with us. It would have been more than a miracle if she had. This four-year old of a friend has an undiagnosed condition that renders her blind, quadriplegic and, as far as it is possible to tell, mentally disabled to a profound degree.

"Since Rose was serenely silent as she lay for hours undisturbed in what seemed a vacant wakefulness, it was easy to imagine that there wasn’t a real person there at all as her mother, Julie, my wife and I and our own children talked and ate a few feet from her. Yet when my elder daughter picked her up and rattled next to her ear a toy called Waterfall, a beatific smile suffused Rose’s delicate features. It was a moment at once moving and shocking – shocking, at least, to anyone who presumed that so limited a life was incompatible with a capacity for happiness.

So begins Dominic Lawson’s powerful piece "The blink that says: I’m disabled but happy" in last week’s Sunday Times.  He goes on to consider the paper published in the latest British Medical Journal that the majority of patients with “locked-in syndrome” report being happy – to the astonishment, as Dominic Lawson reports – of the media at large.

Parents, of course, like Julie Evett and Dominic Lawson are not at all surprised. 

I do not attempt here to summarise the article, nor to comment on it or add my agreement, except to say that Dominic Lawson ends his article: “Fortunately for Rose, her mother is a tigress in her defence. In that, at least, she is lucky.” That, I do agree with. How often it is the case.

Footnote:  Excerpts from “When a Mother’s Love is Not Enough”, featuring Julie Evett, can be found on Rosa Monckton’s website. Scan down the left hand sign and click on the rose.   

"We wouldn't have her any other way"

A post to draw your attention to an article in today's "Independent" Profoundly disabled: We wouldn't have her any other way. The headline writer has summarised the story in under 10 words but I found the story raising all sorts of unsettling questions in my mind. Often, with personal stories of all sorts, I wonder how they got there, in the press and on television that is. I know the frustration that can come from seeing your story in print, or watching the 15 seconds of fame on the tv studio couch, knowing the important things in the interview that got cut or questions not asked, the answers not given. Few media stories come about as the result of an accidental meeting between a journalist and their subject. This story comes about as the result of a book publication and is presumably based on a publisher's press release - the "story" spun this way rather than that because of it. I've no problem with that. I myself may be talking with a journalist today about a Paces' story. The 'spin', the 'angle', the trust in journalist's ability to write up 'the story', is the risk you take for the wanted publicity.

I was uneasy, a niggling doubt, about the rightness of using one's child in this way. There was a furore in the British press a while back about an author who kicked her late teenage son out of the family home and wrote a detailed account of it and his cannabis addiction and its impact on the family. Should she have?  Should I have ever allowed my daughter to feature in media stories about Paces, as we often did in the early days?

Rebecca Elliott's 5-year old daughter Clementine is "profoundly mentally and physically disabled". But, according to the story, to Rebecca, Clementine is "just content and perfect and loved" and "Life with Clemmie is, however, not the classic tear-jerking tale of trauma and tragedy through which, as her parents, we plough on because that is our lot. I absolutely love being the parent of a disabled child. Since having Clemmie I've been let in on a little-known secret: profoundly disabled people are awesome" which, I would remind the journalist, simply replaces one "tear-jerking journalist's stereotype with several others: the heroic parent, the awesome disabled person.

I admire Rebecca Elliott. I admire the effort to put into words the love for one's own child just as she is. I admire the struggle to assert the value of their relationship. I admire the strength of her evident resolve not to want to "fix" her daughter but to celebrate - very publicly - her individuality. I admire the way she has used her own talents as an author/illustrator.

Nor, as you might be suspecting, is there a "but" coming, to end this post.

Pensioner overcomes 'locked-in' syndrome

What should we in conductive education make of the story of Graham Miles? 

I first heard his story - told by Graham Miles, himself - in an interview on BBC Radio 4's Today programme around 8.45am yesterday. This morning I came across it again while scanning news headlines online: "Pensioner tells how he beat 'locked-in syndrome' after massive stroke."

Following a stroke, Graham Miles was left with movement only in his eyes. He now drives.

As reported here in the Daily Telegraph, the story has been set in the debate about assisted suicide. But I found much more interesting listening to Graham Miles' own account of his recovery. He attributes it to the exercise of will-power and tapping into 'unused brain capacity' (a popular misconception, I believe, but let that pass).

I also found interesting, especially in listening to him on the radio, that he says he was offered no medical explanation for his recovery. His doctors were, according to the account in the Telegraph, "amazed" at his recovery.

If, as Dr Hari nearly said, conductive education is about "enhancing the quality of intention to achieve" then the story of Graham Miles might be telling us something. But what?

Do we still fear people in wheelchairs?

Joni Eareckson Tada, author, disability advocate and quadraplegic ("I'm a person not a condition") thinks so:  "Even today, 20 years later, my wheelchair still makes people uncomfortable".

Hat-tip to @GlendaWH on twitter, who says of Joni "One of my childhood heroes"

Do you think Joni is right? "For the most part, able-bodied, "healthy" people still fear disability"

Disability? Long-term health condition? Stop whingeing! Get used to it, says Trevor Cox

Trevor Cox is President of the Institute of Acoustics. Trevor Cox is also Professor of Acoustics at Salford University.  An educated man.

According to BBC News online ("Can you block out the blare of vuvuzelas?"), Trevor Cox urges those of us who find the sound of the vuvuzela spoils our enjoyment of the World Cup television broadcasts:

""My advice? Get used to it - if you think it's annoying, you will get annoyed by it," says Mr Cox. "Embrace it, see it as a colourful part of the World Cup."

In the same way, perhaps the educated President and Professor would advise me to "Get used to" my tinnitus, "to embrace it" and see the insistent, persistent noise of it as "a colourful part" of my life?

Indeed, perhaps the estimable President and Professor would advise everyone with a disability or long term health condition to enjoy this colourful part of their lives - and stop whingeing?

Can disability be sexy?

Can disability be sexy? I wonder how many of us find just asking the question makes us uncomfortable?

Thanks to @GlendaWH's Re-Tweet on Twitter directing me to a remarkable post by Michelle Diament on DisabilityScoop

Take a look for yourself and make up your own mind.

Meanwhile, I'm going to take a look at DisabilityScoop - "the first and only national news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others".