Thursday, November 30, 2006

For Fraser Brown

People are necessarily treading carefully around the news that Gordon Brown's son Fraser has cystic fibrosis. His daughter, Jennifer, was born prematurely and died soon afterwards. That was, of course, easily described as a tragedy. To describe Fraser's affliction as a tragedy would be to insult the life of a child who may well live for many years. What also cannot be said is that this humanises a politician not known for his approachability and warmth. That involves the child in a political calculus. But, speaking from some experience, what can be said is that the role of the severely handicapped is to remind us that we are all handicapped. The only real crime is not to know this.

12 comments:

  1. Ah Bryan. The role of the handicapped...is that something like the role of pain, evil or of death? And the role of failure in a society that places faith in progress and achievement ? And is that why we don't embrace it but turn away from it? And from them, those children marked from birth by an obvious sign of imperfection? Because the truth is we do. We leave families with handicapped children to struggle for the educational and medical support they need. In this country families have to fight their education authorities for something called "a statement of educational need". The support they require is not automatic. Those who have never witnessed the reality of caring for a handicapped child should look a little deeper than the positive statements being made by friends of the Browns about Fraser and his future. What they all face as a family is gruelling, unjust and will be played out bravely and off-stage, as if it were not happening. The families of handicapped children are a voiceless, yet enormous, constituency. New Labour has done nothing significant for them. David Cameron suggests he might, though we can't be sure since he hasn't spelled it out. Brown has said little about some of the obvious injustices of his government's regime. The neglect of the handicapped and their families is one of the less obvious, least looked-at, uncomfortable, injustices. Perhaps, perhaps it won't be possible to look away quite so easily anymore.

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  2. I have a child with special needs and I would like to say that the post by Catherine above is remarkably perceptive; if she doesn't have a child with special needs herself then I suspect she has had a lot of first hand experience of this situation. I feel that the public simply do not understand the pressures on parents. There is a widespread concept that parents in this situation get a lot of help and support from public organisation; this is rarely the case, I have found. I heard on BBC Breakfast News this morning the statistic quoted that 84 per cent (I think) per cent of parents with a child with special needs are below the poverty level. I would not be surprised if this were true. I know of several families where the mother had to give up work to care full-time for the child and the strain became so great that the father took a part-time job or voluntary redundancy in order to support her. Then there is the greater risk of family break-up; I know of some special needs schools where it is almost entirely single mothers bringing up the child.
    One of the major disappointments I have with New Labour is how little it has done for this group.

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  3. My heart goes out to the parents of handicapped children whenever I see them: The very old parents with their middle-aged Downs' Syndrome children in the grocery store, the single mothers with their CP kids at the mall, the doctor's office with its waiting room of borne fruit, some healthy, some ill, some genetically damaged forever.

    I can barely handle two non-handicapped teenagers, so I do not know how these parents manage. Although, had one of my kids been born with CF or CP or Down's, I would know: I'd be doing it. That is what parenthood is about, after all.

    My best friend (of 42 years) has devoted her life to working with handicapped children. For the last year she's had a one-on-one relationship with a girl who has Angelman's Syndrome and is severely handicapped physically and mentally. When Kay was here for Thanksgiving, I asked her if she can really do much for this girl (who is 28) other than babysit. Kay said, "Of course." Kay has taught her how to use the toilet by herself, bathe, dress, how to empty and reload the dishwasher, how to behave when they are out -- Kay takes her charge to plays, to the mall, etc. She says the girl's parents (who divorced over this, their only child's disabilities) are astonished. They didn't think Shannon could learn to do anything -- they had her in diapers and dependent. Kay has two healthy teenagers and during dinner one night, the son said of Shannon, "Happiness is not related to intelligence. Shannon is happier on any given day -- if she gets a balloon, sees a puppy -- than I have been this whole semester."

    Perhaps it is all relative. Here, however, there are services to help people with handicapped kids, but the parents have to push to get them. I think parents who don't know how to do that don't get the help.

    Sorry for the long post; I think about this often: "There but for the grace of God go I."

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  4. Being a father of two children under three, I very well remember the torment I suffered during each pregnancy, hoping that each child would be born free of disability. I agree, Bryan, that we are all limited or disabled in some way, but there is a world of difference between not being very bright and Downs Syndrome, for example. Life is hard enough. Susan's friend's comment about happiness not being related to intelligence is a fair point. A severly disabled child may be happy but it's the parents that I wonder about. Apart from the hard work involved in rearing a disabled child, I'd imagine they carry with them a degree of pain and anguish for the rest of their lives. Of course, I could be wrong; I have no direct experience of this.

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  5. By the way, Bryan, did you deliberately use the term 'handicapped'? I'm no PC nut, but I certainly wouldn't have the nerve to utter it in the circles I mix in or in any circles for that matter (even the ones I wouldn't be caught dead in).

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  6. Neil, I didn't even know 'handicapped' was a problem word. I cannot see why. People who think changing words changes reality are fools. And, if they tell people off for failing to adhere to their zero-cost, utterly conventional conception of morality, they are prigs. I don't hang around with foolish prigs in principle. They should have their own club, The Prigfool, preferably in somewhere like Islington. I never go there.

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  7. It's a problem word alright. Apparently, it connotes a bygone era when those with disabilities were treated very badly. Not a lot has changed as far as I can see. Nevertheless, I'll go along with it. It's not a very attractive word anyway. Although disability doesn't exactly trip off the tongue either. Just for the record, I wasn't making a value-judgement; I tend to steer clear of morality in the evening if I possibly can: it gives me heartburn.

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  8. On the "disabled/handicapped" PC debate, I remember reading an article about the playwright Pam Gems. Pam had a 40-something-year-old daughter with Downs Syndrome. When her daughter was born the term used was Mongol and she continued to use this term to describe her daughter on the grounds that she had used this word for many years and it didn't affect the way she saw her daughter or the love she had for her. Whenever, she used the term "mogol" and people tut-tutted and corrected her, she would say: "I've spent forty years of my life bringing up my daughter which has been damned hard work. What have you ever done except turn over the pages of "The Guardian"?

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  9. Regarding the controversy over "handicapped," please see my "Crippled Words (or, Words with Disabilities)." It agrees with your point about words not being able to change reality.

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  10. Thanks, Scott, I have. We are at one on this.

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