Laurence Clark | ukwatch.net

Extraordinary Television?

Tim Holmes — Wed, 28 Feb 2007 11:59:37 +0000

In recent years, documentaries about individual disabled people have become something of a phenomenon. The TV schedules are now packed with programmes focusing on every type of impairment imaginable - a digital freak show for the 21st century that can be visited without leaving your living room.

Whereas other social issues get the in-depth investigation of a "Panorama", or a "Tonight with Trevor McDonald", the public's grasp of disability issues is typically informed by documentaries focusing on an individual disabled person who, more often than not, could not be said to be very representative of the rest of us. Moreover, an unfortunate fact of life is that the sort of documentaries we would want to see - ones where disabled people aren't 'extraordinary' but competent, capable and in control - do not make as sensational, entertaining viewing as the ones we're now used to watching.

During these programmes I often find myself screaming at the TV: "Where the hell do they find these people?!" I suspect that someone somewhere has set up an agency called Rent-a-Freak, specifically to supply the most bizarre, eccentric disabled people they can find to budding documentary makers. But unlike today's documentary subjects, the freaks of old were at least paid to take part - and had some say over their performances.

A few weeks ago the "Ouch Weblog":http://www.bbc.co.uk/blogs/ouch/200701/tv_highlights.shtml reported a mighty clash of two documentary series on Monday nights at 9 o'clock, with Channel 4 screening "Extraordinary Children" opposite Channel 5's "Extraordinary People". One programme in the Channel 4 series, "Aged 12 And Looking After the Family" (shown 5 February), generated a huge furore amongst disabled people. It focused primarily on the lives of two 'young carers' who were filmed performing a number of household tasks for their visually impaired parents.

As a disabled parent myself, I've always had a problem with this idea of ‘young carers'. To me, it conjures up visions of the comedy Absolutely Fabulous, which featured Edina's reversed mother/daughter relationship with her teenager Saffron. Disabled people find it hard enough to be taken seriously as parents without similar assumptions that our children are somehow responsible for us.

After the documentary was shown, listeners of Radio 4's "In Touch" programme complained that it was "a terrible slant on blind parents" and "will only make the general public's perceptions of what blind people can do even worse."

Paul, the visually impaired father featured in the documentary, spoke to In Touch about how he was now "frightened to go out" because of the amount of hate e-mail he and his wife had received. Not surprising really, since my cursory Google search found a number of message boards containing demands that his children be taken away from him. He went on to say that he'd have never done the documentary if he'd known how his family would be portrayed.

This really struck a chord with me as, about a year ago, my wife and I spoke to a production company about the possibility of taking part in a documentary about disability and parenting. The title of the programme was to have been...

...go on, have a guess...

...yes, you've got it - "Extraordinary Mums"!

We were filmed for an afternoon in our home, playing with our son Tom and talking about being parents. Tom is quite a boisterous child and enjoys being bounced around. With hindsight, I shudder to think how footage such as Tom jumping off our sofa onto my knee could have been used. A subtle bit of editing... a severe camera angle... some mournful violin music... and all of a sudden a happy, playful scene becomes that little bit more sinister.

The problems arose when we talked about our input into the finished programme. We both had fears of being portrayed as the stereotypically tragic, brave parents struggling to bring up a child against a cruel act of fate which left us disabled. And if someone was going to broadcast an intimate portrait of our family life on national television then it seemed reasonable to want a say in how it turned out. Well, wouldn't you?

But it soon became clear that we would not be allowed the level of control that we wanted, so we backed out. Indeed, with hindsight, I think it's a mistake to view these documentaries as simply presenting people's life stories, as is so often thought. As with any other piece of art, the outlook of the creator will inevitably shape the finished piece.

So if any Ouch readers are approached to take part in an 'extraordinary' documentary, my advice would be to think long and hard first. Give the production team a thorough grilling to make sure you understand and agree with what they are trying to show in their programme.

Because otherwise you might not like what ends up on television.

The Cost of Living

Tim Holmes — Tue, 23 May 2006 16:41:56 +0000

At a conference last month, I had the dubious honour of sitting on a panel next to John Hutton, the Secretary of State for Work and Pensions. After he spoke on the forthcoming Incapacity Benefit reforms, the floor was opened for questions. A guy with Cerebral Palsy asked the question at the forefront of my mind:

"How on earth can disabled people be encouraged to take up employment when, once in work, they may face a bill of up to £200 per week for community care charges?"

'Care charges' are the contributions that disabled people have to pay if we need assistance with everyday tasks like washing, dressing, or eating a meal. Mr Hutton repeated the classic mistake made by many a politician when faced with a question from someone with CP - he pretended he'd understood what they'd said, when in actual fact he hadn't. So he ended up giving a completely irrelevant response and hoping that nobody would notice.

Abusing my position, I butted in to remind him that he had actually been the minister responsible for introducing the current guidance on charging. Taken aback, he threw me a look of pure contempt, obviously unused to such a lack of camaraderie on the part of a fellow panellist, and replied that this did not fall under his current jurisdiction.

Maybe he was thinking back to his speech in Parliament in 2001 on making funding fairer, supporting carers and avoiding putting disabled people into residential institutions? At the time he stated: "I do not believe that making personal care universally free would help us in achieving any of those objectives". It's somewhat ironic that the person who introduced the current system for charging - in my opinion one of the biggest deterrents for anyone considering employment - has now been put in charge of getting more of us into jobs!

The current guidance, 'Fairer Charging', is a contradiction in terms if ever there was one. It states that charging should avoid creating disincentives to work by disregarding people's earnings. Instead, social security benefits such as Income Support should be used to decide whether someone pays. But of course, entitlement to Income Support is based on people's earnings. This is what is known as Sir Humphrey Appleby logic!

It was once estimated by the national 'Coalition Against Charging' that up to 40% of the money we pay in care charges is spent on administration. In other words, a significant proportion of our contributions go to pay the council employees to carry on collecting our contributions. Never mind the Sir Humphrey Appleby logic - It's even starting to sound like a plot from the sitcom Yes Minister, isn't it?

Worse still, if disabled people living in a residential institution decide to work, they are only allowed to keep £20 per week as the rest of their income must be directed towards the cost of keeping them there. It makes no difference whether they're on minimum wage or earning more than the cost of their fees - twenty quid is all they get!

Nowadays we're constantly getting reminders of the importance of saving for retirement. But for disabled people in my position, getting a savings account is the quickest way to a £200 bill landing on your doormat every week, since savings over a certain limit must be taken into account. Fairer charging? My arse!

Whether or not someone gets charged boils down to whether their primary need for assistance has been assessed as a health need or a social need, since healthcare is free but social care costs can be passed down to us. This is a completely artificial distinction. Personally I couldn't give a monkey's toss whether my needs are health or social; the fact remains that I need assistance to live independently and don't see why I should have to pay for it!

At the start of this year a study of the Scottish system of free social care was published, showing that its replication in England, Wales and Northern Ireland would be both affordable and beneficial to disabled people, particularly those with low incomes.

Yet in February, the Welsh Assembly Government abandoned their 2003 election manifesto pledge of ending charging in Wales. According to BBC News, they blamed legal issues over definitions of the words "free" and "disabled". How exactly can you misinterpret "free"?

Value Judgment

Alex Doherty — Wed, 19 Jan 2005 16:12:30 +0000

A couple of months ago, during a report I presented for Newsnight on BBC 2, Sir John Sulston, the 2002 Nobel Prize winner for Physiology or Medicine, spoke about aborting impaired foetuses. He said: "I would say if we can select children who are not going to be severely disadvantaged then we should do so. But I think it has to be done by voluntary choice..."

Currently the law says the deadline for an abortion is 24 weeks, unless tests indicate that the foetus may be impaired, in which case an abortion can be carried out right up to the due date. Since the broadcast, I've lost count of the number of people who've remarked that they didn't realise ideas like Sulston's were still around.

Sulston justifies his view by claiming scientific objectivity. But his argument is fundamentally subjective, as it depends on what we think is a "severe disadvantage".

There is a history of basing discrimination on biological differences, such as being female, black, disabled, and so on. It could be argued that people from any of these categories will experience severe disadvantages because of society.

But while it is considered unacceptable to abort foetuses on gender or race grounds, it is now commonplace to terminate foetuses with predicted impairments.

I believe this is down to sheer prejudice. It is still commonly assumed that disabled people's quality of life is somehow less. Not so long ago, the same was said about women and black people's lives.

Furthermore, it could be argued that children born into families in poverty will be "severely disadvantaged" when compared to their wealthier counterparts. Does this mean that poorer couples should also be exercising the "voluntary choice" advocated by Sulston for disabled couples?

"Choice" can be an ambiguous word in medical circles. I completely respect a woman's right to choose, but maintain that the deadline for abortion should be the same, irrespective of impairment.

Crucially, choices are dependent on information, and by presenting tragic portrayals of disabled people's lives, medics are denying parents a truly informed choice. It is scandalous that bleak scenarios, similar to the one presented to my mother 30 years ago, are still around today.

You have to ask yourself why disabled adults aren't involved in the production of information for prospective parents. Why hasn't a peer support service been established by the NHS so that prospective parents can talk to disabled adults with the same impairment as their child? Why does the medical profession ignore positive first hand accounts of living with impairment by instead continually pushing a eugenicist agenda?

I agree that as a disabled person I experience disadvantage. However this has nothing to do with how my body works. It is caused by inaccessible housing, transport and services. Furthermore, I believe I'm "severely disadvantaged" by living in a world where eugenicist views such as Sulston's are given credence.

I really struggle to understand the mentality of a father of two, who disputes the right of another social group to bring children into this world. His outlook is at odds with article eight of the Human Rights Act, which guarantees the right to respect for family life.

The right to procreate and start a family should not be dictated by the medical profession.

Laurence and Adele's son Tom was born on 11 November 2004