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Raoef Mamedov’s Last Supper

Posted in Attitudes to disability, Media by Matt at WelcometoIllinois on November 11, 2009

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Click the picture for the full size version.

A few months ago I stumbled across a blog post about a depiction of The Last Supper by Russian artist Raoef Mamedov. I was recently reminded of it by a not-so eloquent discussion and decided to post it here.

It is a really fascinating work of art, although there are some not-so-hidden messages that are not entirely positive in terms of attitudes to disability and religion. All in all though I find it equally captivating and challenging.

Make of it what you will.

In defence of Simple Jack

Posted in Attitudes to disability, Media by Matt at WelcometoIllinois on November 10, 2009

Amid the furore against Tropic Thunder and the film-within-a-film Simple Jack last year I maintained that “the protesters against Tropic Thunder appear to be either misunderstanding or willfully ignoring the fact that Tropic Thunder is a satire in order to get their point across”.

In Simple Jack, Stiller’s character from Tropic Thunder tries to prove he is a serious actor by playing a disabled character. David Tolleson (executive director of the National Down Syndrome Congress) described the portrayal as “shockingly awful”, missing the fact that that was, in fact, the point.

The point of Simple Jack was to lampoon vacuous actors who see playing a character with disability as proving their credentials as an artist.

With that in mind, I draw your attention to this article about Filipino actress Niña Jose. I had never heard of Jose before reading this article, nor do I expect to again.

From the article we learn two key things about Jose:

  • “My boobs are real.”

and

  • “I just don’t [want] to limit myself to sexy roles. My dream role? I want to play someone who [has] Down’s syndrome. Super challenging.”

I don’t think I need to add anything else at this juncture.

Human beings are not capable of deciding whether to continue with the pregnancy of their unborn child based on statistics and percentages

Posted in Diagnostic testing, Media, Screening, Statistics, This blog by Matt at WelcometoIllinois on October 29, 2009

The UK’s coverage of Down’s syndrome screening and statistics continues following the publication of a report in the BMJ.

Tom Shakespeare, research fellow at the Institute for Policy and Practice at Newcastle University, has written an interesting and provocative piece looking beyond the statistics to the human cost of screening for Down’s.

I started off submitting a quick comment but it quickly became the spelling error-packed diatribe I have been considering writing for some time. I’m not sure where I am going with this in all honesty, but I think I am building to something here…

Having been through the process of dealing with a pre-natal diagnosis of Down’s syndrome I have come to the conclusion that human being are simply not capable of deciding whether to continue with the pregnancy of their unborn child based on statistics and percentages. I agree with Tom that we need more research into the long-term emotional consequences of these difficult decisions but would go further and suggest that we need to radically rethink how we as a society approach screening.

In my experience, johnthewayne is correct: “we test for downs, not because it is the worst thing in the world, but simply because it is possible”. The result is that parents are supplied with information that is supposed to be “accurate” but tells them nothing.

These were ours: “a one in 11 chance based on the nuchal fold; one in 4,000 based on the blood; one in 76 in total, compared to one in 300 on average for my wifes age; a 95% accuracy rate for the combined test, compared to 85% for just the nuchal fold measurement; a one in 100 chance that the next test could result in a miscarriage.”

If you think you know what you would do faced with these statistics think again. You cannot possibly know until it is your own child you are deciding the fate of.

Then there is the fact that the effects Down’s syndrome are a spectrum. Will your child have heart problems, thyroid problems, gastrointestinal problems, hearing problems, leukemia, hypotonia? None of the above? How severe will the learning impairment be?

The screening process asks all of these questions and provides answers for none of them, and yet we are expecting would-be parents to use the results of screening to decide the fate of their unborn child. Counselling can help parents understand what Down’s syndrome is, but it does nothing to help them make the most important decision in the life of their child.

In this context it does not surprise me that so many people decide to terminate following a pre-natal diagnosis (aside from the fact that they may decide they do not want to or not capable of raising a child with Down’s syndrome, which is an entirely valid response).

In my experience the decision to terminate is the only choice facing parents that enables them to regain control of the situation. As we considered out options we were drawn almost inevitably towards termination by the fact that it was the only decision that provides a definitive outcome, rather than more chance.

I say almost – in the end we decided that Downs syndrome, in and of itself, was not enough to justify abortion, and that we would take that chance. Our son is now one year old and healthy and happy and I have not regretted our decision for a second.

However, my desire to rethink the screening process is not based on ensuring more parents take the same decision as us – that is for them to decide – it is a desire to ensure that the process itself reflects the severity and long-term implications of the decision itself.

UK press wakes up to Down’s syndrome statistics

Posted in Media, Statistics by Matt at WelcometoIllinois on October 27, 2009

Back in April I reported on the latest statistics on Down’s syndrome births in England and Wales from the UK’s National Down Syndrome Cytogenetic Register, noting that I hadn’t seen any reporting of the latest statistics in the mainstream press.

Six months, and an article in the British Medical Journal, later and Down’s syndrome stories are in all today’s newspapers. As Simon Barnes notes, “it seems that we are in the middle of a veritable plague of Down’s syndrome”.

Take your pick:
The Telegraph: Three babies aborted every day due to Down’s syndrome
The Independent: Big increase in number of Down’s pregnancies
Reuters: Abortion of Down’s babies rising
The Press Association: Older mums link to Down’s increase
The Times: Surge in Down’s pregnancies is matched by surge in terminations
The Daily Mail: Down’s syndrome cases soar as women delay starting a family
ScienceDaily: Increase In Down Syndrome Offset By Better Screening
The Telegraph: Increasing number of women being diagnosed with Down’s syndrome babies
The Guardian: Delayed motherhood behind increase in Down’s syndrome babies, research says
The BBC: Steep rise in Down’s pregnancies
The Guardian: Steep rise in Down’s syndrome pregnancies
Daily Mirror: 71 per cent rise in Down’s syndrome diagnoses
Channel 4: Down’s syndrome cases increase

I haven’t read all of these, obviously, but those that I have read offer little beyond the statistics that have been generally available for six months. Congratulations, I suppose, to the Queen Mary college press team for getting the stats reported.

UPDATE – I have now read them all. Some interesting points from The Times story:

  • “Researchers found that the proportion of cases diagnosed antenatally in women under 37 has risen over the time period, from 3 per cent to 43 per cent. However, among older women, a consistent 70 per cent of affected pregnancies were diagnosed antenatally.”
  • “Professor Morris added that further research was at risk because funding for the national register, provided by the Healthcare Quality Improvement Partnership, was guaranteed only until March 2010.”
  • “One woman, who chose to have a termination after a Down’s diagnosis, said: “Everybody says they know what they’d do in that situation. But you don’t. You never know until it happens to you.””
  • – UPDATE

    There are also some stories that go beyond the statistics:
    Daily Mail: Older men five times more likely to father children with birth defects
    The Times: Women’s choices on Down’s syndrome screening must be informed ones (commentary from Carol Boys of the DSA)
    The Guardian: The upside of Down’s syndrome (More commentary from Carol Boys)
    The Telegraph: The Fergusons: living with Down’s syndrome
    The Telegraph: Belinda Benton: I had healthy baby despite Down’s syndrome risk
    The Times: Actually, having a child with Down’s syndrome is no big deal

    The last one, written by the aforementioned Simon Barnes is a really concise, well-written commentary:

    “My second child, Eddie, 8, has Down’s syndrome and, you know, it’s not that much of a big deal. It’s remarkably like being a parent, as a matter of fact. All you need is unconditional love,” he writes… He’s a valid, viable, useful and cherished member of his society: why on earth should he be anything else?”

    The baseball star and the bumblebee

    Posted in Media by Matt at WelcometoIllinois on September 7, 2009

    Albert Pujols, the St Louis Cardinals baseball player, has a daughter with Down’s syndrome, and so regularly crops up in my searches for news on Down’s syndrome. I’ve been reading a lot about him recently since he donated $70,000 from the Major League Baseball Players Trust to help open a a center to assist adults with Down syndrome.

    Pujols also operates the Pujols Family Foundation which provides support for people with Down syndrome as well as impoverished children and orphans in Pujols’ native Dominican Republic.

    He’s clearly a caring and compassionate person, as proven by this story about the extra care and attention he paid to a Cardinals fan injured trying to catch a ball at a game in August.

    But the St Louis Today article is not really about Pujols. It is about that injured fan, Tim Tepas, who was injured trying to catch the ball for his son Keith, who also has Down’s syndrome. In Tepas’s bag was a unsent letter written to Pujols sharing his feelings about Down’s syndrome and doubt and acceptance. The St Louis Today article is also ostensible about coincidence – about how Tepas’s unsent letter sat in his bag while Pujols led the other players and coaches in ensuring Tepas was okay, before reassuring Tepas’s son and ensuring he got his game ball.

    What the article is really about, for me, however, is a father’s love for and commitment to his son. That unsent letter detailed their own private baseball season:

    “Three days a week, Tepas picks up Keith and they head to a little league field. Tepas pitches from a box of old balls. Keith wields the bat. The father keeps stats, tracking the progress of his son like he is a major league prospect. The father notes with precision how many balls Keith hits over the fence, how far they travel. He walks off the distances to be sure.

    “With the number of home runs, the father can see his son’s growth. Keith is not tall, standing just under 5 feet 2. But he has a slugger’s swing. Two home runs the first year, eight the next, then 26, 53, 97 and 94 so far into their private season.”

    I’m sure I am not alone in being moved by that story, but it was Tepas’s comparison with the humble bumblebee that really did it for me: “According to the laws of aerodynamics, the bumblebee can’t fly. But the bumblebee doesn’t know that. So it flies… Like the bumblebee, [Keith] doesn’t know that he’s not supposed to fly.”

    Pujols is obviously the focus of the article, and he deserves a lot of credit. But the real star is Tepas.

    Father knows best? Male perspectives on Down’s syndrome suaght for new book

    Posted in Attitudes to disability, Media by Matt at WelcometoIllinois on July 15, 2009

    Via The Accidental Advocate and Mommy Life comes news that a Mike Burgess is planning to collate the views of fathers of children with Down’s syndrome into a book.

    With a working title of “Brand New Man: Reflections on Fatherhood and Down syndrome” the book will present the views of not just fathers but brothers, uncles, grandfathers and self-advocates and is designed to complement the many books that present the views of mothers on the same subject.

    Anyone interested in sharing their story, can email Mike Burgess at burgeo2c@duke.edu.

    Am I going to contribute? I’m thinking about it.

    Stop me if you think you’ve heard this one before

    Posted in Media, Politics by Matt at WelcometoIllinois on February 24, 2009

    The Washington Post has published an interesting story about the implications of new non-invasive testing techniques.

    However, the story is pretty much a re-hash of the issues discussed in this article in the same paper in October 2006, which I covered here.

    A clue as to why the story has been rehashed comes from the fact that funding for the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which was approved in September.

    “The new tests for Down syndrome come as advocates pressure Congress to fund a law passed last year aimed at ensuring that couples get accurate information about genetic conditions and at providing support for women who decide to keep their affected children or put them up for adoption.

    “These tests make this all the more important,” said Madeleine Will of the National Down Syndrome Society, which is seeking $25 million over five years to implement the legislation. Society members are gathering in Washington this week to lobby on this and related issues. “

    Be My Brother

    Posted in Attitudes to disability, Media by Matt at WelcometoIllinois on February 23, 2009

    This is a great little film. No wonder it won the Tropfest short film festival. It features Gerard O’Dwyer, who also won the best male actor award. he has Down’s syndrome.

    I can’t seem to link to it directly, but you can find it here.

    Life as we know it

    Posted in Attitudes to disability, Ethics, Media by Matt at WelcometoIllinois on January 21, 2009

    After waiting a couple of weeks for one of the big book chains in the UK to tell me they couldn’t get hold of Life As We Know It by Michael Bérubé I eventually had a copy sent over from the US via Amazon. It was worth the wait.

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    I was very interested when I discovered Bérubé and the fact that Life As We Know It includes both a personal account of the progress of Bérubé’s son Jamie, and an “investigation into the contradictory social effects evoked by clinical procedures in utero, genetic testing and the whole concept of ‘disabled’ children”. The book does not disappoint.

    This is a book for the head as well as the heart. Bérubé’s love for his family and affection of those that have helped Jamie is evident as he discusses Jamie’s progress through the first four years of his life as he learned to live with and overcome issues such as Down’s syndrome, a hole in the heart, floppy larynx, jaundice, polycythemia, torticollis, vertebral anomoly, soliosis, hypotonia and feeding problems.

    The progress that Jamies makes in those four years, and the processes he goes through to make that progress, are fascinating. Equally fascinating is Bérubé’s discussion of the ethical and philosophical questions that are prompted by disability, and attitudes to disability.

    Bérubé covers issues relates to abortion, diagnostic screening, government policy, the US healthcare system, intelligence testing, eugenics, evolution, genetics, the history of attitudes to learning disabilities, language, educational policy, institutionalization, justice, altruism and more.

    While Life As We Know It is a personal account, it takes an academic approach (Bérubé was director of the program for research in th humanities at the University of Illinois when the book was published and is currently the Paterno Family Professor in Literature at Pennsylvania State University) to the subject matter and as such it stands out when compared to many books written by parents of children with Down’s syndrome and may not be for everyone.

    However, I found the book to be enjoyable, educational, informative, challenging and enthralling and would recommend it to anyone who is interested in the ethical issues related to Down’s syndrome and disability.

    While the quoted sources take in Ludwig Wittgenstein, Naomi Wolf, Camille Paglia, Emmanuel Kant, Fyodor Dostoyevsky, Richard Dawkins, Rene Descartes, Noam Chomsky and St Augustine, there is also room for Chris Burke, and Kingsley and Levitz, not to mention Where the Wild Things Are, Goodnight Moon and The Easter bunny’s relationship with Jesus Christ.

    The latter relates to the theory, dictated to Jamie’s case worker by her own son who also happens to have Down’s syndrome, at the age of five, as to how why rabbits came to be associated with the celebration of the resurrection of Christ:

    “When Christ was crucified, all the world was sad. Everyone left. But the bunnies stayed, because they were not afraid. So Jesus told the bunnies that they were right not to be afraid, and it would henceforth be their task to bring cheer to children on Easter Sunday.”

    The story demonstrates a theme that runs through Bérubé’s book and the communication that initially brought him to my attention; that we are only just beginning to understand the cognitive, imaginative, artistic and physical achievements people with Down’s syndrome are capable of.

    In concluding his book Bérubé describes his hope that Jamie will one day become the author of his own story – both metaphorically and perhaps literally. There seems no doubt from Life As We Know It that he will one day be able to do so. The question remains as to whether society will enable others like him to also find their own voice.

    BBC breached code over use of ‘the r word’

    Posted in Attitudes to disability, Language, Media by Matt at WelcometoIllinois on December 9, 2008

    The Independent reports that the BBC has been found to have breached the Broadcasting Code after a US comedian described Sarah Palin’s son, who has Down’s Syndrome, as “retarded”.

    While I support the campaign to reduce the use of the word “retard” I have also previously argued that its use can be justified by context.

    Taking a look at Ofcom’s ruling it is clear that wasn’t the word itself that was found to have breached the code but the context in which it was used, and the BBC presenter’s failure to apologise:

    “Ofcom notes that the comedian made references to individuals as “retarded”. Research indicates that views on this term are split. It is considered by some to be highly offensive, while others are less concerned by its use.

    Ofcom acknowledges that BBC 6 Music attracts a predominantly adult audience and that regular listeners who are familiar with the irreverent style of its presenters and guests may not necessarily find the use of words such as “retard” offensive.

    When dealing with generally accepted standards, the Code refers specifically to offence that may be caused by discriminatory treatment and language based on disability. In this case, the word “retarded” was used in a particularly derogatory manner. Further, references to Down’s Syndrome were also made in a clearly offensive way. First, a child with Down’s Syndrome was described as retarded. Second, there was a highly offensive comment which described Down’s Syndrome as a form of punishment by God. Both of these, in Ofcom’s opinion, went well beyond generally accepted standards and the audience’s expectations for this programme. In this case in was clear that the context did not justify these offensive comments.

    Ofcom was also concerned that during the broadcast the presenter did not give what it considered to be a sufficient reprimand or apology, which could have served to reduce the offence.”

    The comments were made by American comedian Doug Stanhope, on a digital channel, BBC 6 Music, and prompted one complaint, according to Ofcom. If you want to know precisely what he said, take a look at the ruling.

    The R Word Campaign