Integrated or patronised?

There’s no doubt that Oliver had a great time and that his dad loves him,  but is this real achievement or sentimental tokenism.

This was published by the Down’s Association on Facebook today What’s your view?

Oliver’s Sports Day 2014 – Dad Mathew writes:
‘Oliver set off in the wrong direction, then unconventionally for a sprint he had a sit down, then with some coercion, he continued at a plod, roared on by the entire school and cheered and clapped by all the parents as they willed him to the finish line. He triumphantly turned to the wild supporters and punched the air with a roar! There was barely a dry eye on the field! Last place by about 5 minutes but a heroic effort to match Eric the Eel and loving it!
Great effort son! Love you xxxx’

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I like seeing him. But he doesn’t like seeing me. We go for fish and chips, because that’s his favourite. It’s not my favourite .

 

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Siblings who live with autism may not be thinking in terms of interest and mystery!

Victor gives the poignant  insight into life with an autistic brother used as the title for this post. It’s very difficult for parents to cope with an autistic child and give other children the time and attention they need.

Robert  feels angry and despondent about his severely autistic brother, Barry:

I’m 14 and I have an older 18 year old brother who is autistic and also has severe learning disabilities. He has the understanding and emotions of a 3 year old. He drives me nuts and ruins my life. I can’t have friends over because Barry will get upset because strangers make him nervous. I can’t eat snack foods I like at home because they make Barry too hyper and it wouldn’t be fair if I ate them myself. I have to answer all his ridiculous questions that he asks a million times a day and I have to give him exactly the same answer every time because he will get upset and go into melt down if I say anything different or do not answer him. I always have to take second place in the family because Barry is so “special” and has to be considered first. Barry always comes first because everyone, including my parents are frightened of him.  He also gets often hits me suddenly for no reason and then running away and he is BIG, like 6 feet and 16 stone

On top of it my parents are always saying how I will have to take care of Barry when they get too old. Wonderful. Like I will ever be able to have a wife and family of my own with an autistic brother stuck In my house terrifying everyone. I honestly hate him. He’s even worse than worthless because he makes me miserable and makes my life into hell.

My counsellor always tells me to have patience and that Barry’s special and I have to love and understand him but I know if she had to spend an hour with him she would want to kill him. Everyone who doesn’t live with an autistic person is always talking like that. They are so patient and kind and understanding and tolerant but how would they like my life????? Bet they would go totally insane in a week.

A huge challenge is how to support the Victors and Roberts and their parents in ways that are really helpful to them – as well as acknowledging the reality of the issues that they face.  What are your views on what helps and what doesn’t – particularly if you have faced similar problems or have found ways of helping those who have them.

Does an oversupply of spaces or places for disabled people, particularly wheelchair users, contribute to abuse of the system?

Does the emphasis on provision for wheelchair users – who are less than 8 per cent of disabled people. – discriminate against others with a disability. (The majority of impairments are not visible) Click here for more numerical information about  people with disabilities in the UK.

What are your views? Have you experience or known about abuse of the system? What would improve provision for all disabled people and minimise abuse?

For example, were there too many spaces allocated for disabled people allocated for the football world cup, so that  those paces could never have been filled and police understand that some fans who bought tickets on the black market may have taken wheelchairs in order to get around normal security to enter the stadium. Do you think that these tickets were spare – or were people who really needed them being deprived of the opportunity to attend?

Amid the mad scramble for tickets, some are believed to have acquired concession passes intended for disabled fans. Police will now investigate whether the fans with wheelchairs in the disabled section did indeed require the assistance and have legitimate passes for the area.. Given that the requirement for a wheelchair does not always mean that an individual depends on its assistance all the time, it is a sensitive issue and one which officials are having to probe fully.

In the UK there is a legally government laid down ratio of normal car parking spaces to the minimum required number of disabled spaces provided. The minimum number is 2 marked disabled parking bays or 6% of the total number of bay must be reserved for marked out for disabled parking. Up to 34 bay the requirement is 2 disabled, above 34 bays 6% of the total number of bays must be marked disabled. Is this too many, about right or too few? Should elderly or infirm people, who are unlikely to be classified as disabled be able to use those spaces?

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The Daily Mail says ‘Hundreds of thousands of prime parking spaces in shopping centres are unused because of a legal obligation to provide four times as many disabled bays than are actually needed.Supermarkets, shopping centres and leisure centres must allocate up to 6 per cent of their parking bays for disabled badge holders  –  even though just 1.4 per cent of the population is registered disabled’

Does this mean that non-disabled drivers are more likely to use the spaces as they always seem to be empty?

 

And what about provision in your country? Are parking spaces or other spaces allocated soley for disabled people? If so, how do people qualify to use them? What provision is made in places of entertainment, public buildings or public transport? How is provision protected for disabled people?

 

 

Disability and pregnancy

Women with some disabilities sometimes risk their health or even their life to have a baby.  What issues does the story below raise for you about disability, sexuality, risk and parenthood? Will  this child be disadvantaged or lucky to have such a determined mother?

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Dankinja Melek was born with no legs and one arm. Though the doctors told her that pregnancy could be dangerous for her, Melek will soon give birth to a child.

The doctors have told me that they are worried about me but I was not nervous, and I believe that it will be all right. I’m eight months pregnant and everything is fine – says Melek who is about to give birth to a boy. The boy currently  weighs three pounds, and Melek and her husband have decided to name him Semih Akin.

Melek says she got pregnant naturally. She added that at first she could not believe she was pregnant, and she made five or six tests to be sure. She admitted that the last two months have been very difficult. During pregnancy I obviously gained a few pounds and therefore generally lie down – Melek said. She is helped a lot to her husband Mehmet who is originally from Turkey. They met a few years ago. At first they were friends, and then they fell in love. They were married six years ago.

Originally prepared by: Bojana Minic

Translated and edited by: Matthew Griffiths

Source: magazine.invalidnost.net

 

Living with autism – a sister’s story

Disability and an Ordinary Life

It’s often difficult for people with a disability to lead an ordinary life but  it’s often difficult for family members too.  Family members may feel that they cannot express their true feelings. Emma, whose story is set out here, bravely sets down her feelings about her brother’s autism. Her story is included here to show just how difficult it can be to live with a severely autistic sibling – and to show that it is OK to express negative feelings. We don’t have to be saints!

I have never accepted my brother’s autism and have found it very difficult to deal with. His name is Daniel, and he has severe autism. I am 18 years old, and he is 16, with the mind of an infant. I shall never hear my brother say my name. He cannot speak, is still in nappies, and has been living in a special care…

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Disability and Happiness. Do you agree with Tom Shakespeare?

A Point of View: Happiness and disability

Tom Shakespeare is a sociologist, writer and performer who researches disability studies, bioethics and medical sociology. He was born with restricted growth and leads research into the condition

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Surveys reveal that people with disabilities consistently report a good quality of life, says Tom Shakespeare. So why is it often assumed they are unhappy?
Have you ever thought to yourself: “I’d rather be dead than disabled?” It’s not an unusual reflection. Disability, in everyday thought, is associated with failure, with dependency and with not being able to do things. We feel sorry for disabled people, because we imagine it must be miserable to be disabled.
But in fact we’re wrong. It’s sometimes called the “disability paradox”. Surveys reveal people with disabilities consistently report a quality of life as good as, or sometimes even better than, that of non-disabled people.

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Impairment usually makes little difference to quality of life. Research shows, for example, that overall levels of life satisfaction for people with spinal cord injury are not affected by their physical ability.
Even the clinical facts of whether their spinal lesion is high or low, complete or incomplete – all aspects that affect functioning – don’t seem to make much difference. Human flourishing is possible even if you lack a major sense, like sight, or you can’t walk, or you’re totally physically dependent on others.

So what’s going on?

If you think about it for a moment, you realise that people born with an impairment have nothing to which they can compare their current existence. Someone lacking hearing or sight has never experienced music or birdsong, visual art or a sublime landscape. Someone with an intellectual disability may not consider themselves different at all. Someone like me, born with restricted growth, has always been that way. Even if life is sometimes hard, we are used to being the way we are.
For people who become disabled, there’s a typical trajectory. I can say this from personal experience, having become paralysed in 2008. Immediately after the onset of injury or disease, one can feel profoundly depressed, and even contemplate suicide. Yet after a period of time, people adapt to their new situation, re-evaluate their attitude to the disability, and start making the most of it. Sometimes, they are driven to greater achievements than before. Remember those amazing Paralympic athletes…
Maybe you are sceptical about the subjective nature of quality-of-life data. Bioethicists sometimes describe these self-reports in terms of the “happy slave” concept, in other words, people think they are happy because they do not know any better. Perhaps these cheerful people with disabilities are deluding themselves. Or, perhaps they are fooling others. Maybe in private they admit to misery, while in public they put on a brave face. Either way, it’s said these folk must be in some kind of denial.
But these explanations are patronising, not to say insulting. More importantly, they’re wrong. Research in a field called hedonic psychology has supported disabled people’s self-reports of good quality of life. Scientists such as Daniel Gilbert have done very thorough testing of what people say and how they think. They’ve come up with the concept of hedonic adaptation – which refers to the way in which after trauma, quality of life eventually returns to approximately what it was before the trauma struck. Amazing, eh? Unfortunately this also happens in reverse – so, if you are lucky enough to win the lottery, you’ll feel like £10m for a year or two, but then you’ll go back to being as miserable or cheerful as you were before your stroke of luck.
So if these self-reports are true, we will need to find better ways of understanding the disability paradox.
To start with, we can offer more nuanced accounts of the psychological processes that go on in the mind of a person with disability. Adaptation means finding another way to do something. For example, the paralysed person might wheel, rather than walk, to, places. Coping is when people gradually re-define their expectations about functioning. They decide that a stroll of half a mile is fine, whereas previously they would only have been content with a 10-mile ramble. Accommodation is when someone learns to value other things – they decide that rather than going for walks in the country with friends, it’s far more important to be able to go to great restaurants with them. This teaches us an important lesson – human beings are capable of adapting to almost any situation, finding satisfaction in the smaller things they can achieve, and deriving happiness from their relationships with family and friends, even in the absence of other triumphs.

Our appraisal of life with impairment may have less to do with reality than with fear and ignorance and prejudice. We wrongly assume that difficulties for people result in misery for people.
Even to the extent that impairments do entail suffering and limitation, other factors in life can more than compensate for them. Take the recent French box office sensation Les Intouchables, in which the protagonist, Philippe has tetraplegia, but despite this, he is able to have a good quality of life because he has money. Even people who aren’t lucky enough to be wealthy Parisian aristocrats can enjoy the benefits of friendship or culture, despite the restrictions that impairment places on them. By contrast, it is plain to see that someone can have a fully functioning body or mind and yet lack the social networks or the personality necessary for living a happy and fulfilled existence.
This highlights the importance of the environment in determining the happiness of disabled people. As in most areas of life, it’s structural factors that make the real difference. Participation, not impairment is key. Do access barriers stop you going to school with your friends? Do you have a job? Does society meet the extra costs of having an impairment through a welfare system which is fair and non-stigmatising? Do you face hostility and hate crime? Unfortunately, in most of these respects the situation for disabled people has been getting worse, not better, in recent years. According to the Centre for Welfare Reform, this government’s spending cuts have had a hugely disproportionate impact on the lives of disabled people in poverty.

In arguing that social barriers are more of a problem than the impairment itself, I am not suggesting that fear is completely irrational. For a start, disability is very diverse in ways that mean we have to soften the claim that “disability is no tragedy”. Some illnesses and impairments undoubtedly involve greater degrees of misery or suffering than the average human should have to endure. I’m thinking of depression, for example, which biologist Lewis Wolpert memorably labelled “malignant sadness”. There are some nasty and painful degenerative diseases. Impairments that involve considerable pain, whether physical or mental, are obviously less compatible with a good quality of life.
It’s also true that in general, disabled people usually have fewer choices than non-disabled people. Most societies still have limited accessibility. Even in a barrier-free world, the disabled person is more likely to rely on mechanical devices that periodically malfunction, rendering the individual excluded or dependent. I have been stranded thanks to a flat tyre on my wheelchair or a broken lift numerous times. Most disabled people become inured to the frustrations of inaccessibility or breakdown, but it certainly makes life less predictable and less free than it is for the non-disabled.

But my point is that while disability is not simply an irrelevant difference, like the colour of your skin, neither need it be a tragedy.
And remember: Mere existence entails problems. Hamlet, listing reasons why death is to be preferred, highlights “the thousand natural shocks that flesh is heir to”. To be born is to be vulnerable, to fall prey to disease and suffering, and ultimately to die. Sometimes, the part of life that is difficult brings other benefits, such as a sense of perspective or true value that people who lead easier lives can miss out on. If we always remembered this, perhaps we would turn out to be more accepting of disability and less prejudiced against disabled people.

 

A Point of View is broadcast on Friday on Radio 4 at 20:50 BST and repeated on Sunday at 08:50 BST. Catch up on BBC iPlayer