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Getting it wrong and telling it right

Posted in Attitudes to disability, Campaigns, Personal, Screening by Matt at WelcometoIllinois on January 2, 2010

My older sister is currently expecting her second child. Being a few years older, and therefore statistically more likely to have a child with Down’s syndrome, and also having seen from our experience that it pays to be prepared, she is likely to have a combined test in the coming weeks to assess the possibility that my new niece or nephew has DS.

However, this post isn’t about my sister or the next addition to our family. Its about the health care “professional” who told my sister that she shouldn’t be overly concerned there is a history of Down’s syndrome in the family since the link is via her brother (me) and Down’s syndrome “is passed down the mother’s side”.

The ignorance revealed in that statement is staggering. To be clear, Down’s syndrome can be the result of inheritance from one of the parents (who would not show any signs of chromosomal abnormality) but that form of translocation occurs in only 1/3 of 4% of cases of Down’s syndrome, and in any case can be inherited from either the father or the mother.

This information itself would only be relevant in my sister’s case if G had Translocation Down’s syndrome, which he doesn’t. But then it sounds like the health care worker concerned is having trouble with the basics, let alone the difference between Trisomy 21, Translocation and Mosaic Down’s syndrome.

It is frightening to think that someone lacking a basic understanding of Down’s syndrome is providing advice to expectant couples.

It is also a timely reminder that the Down’s Syndrome Association’s Tell it Right campaign involves a petition to the UK Prime Minister to provide high quality information in the diagnosis of Down’s syndrome. For those in the UK there are just five days left to sign the petition.

UK politicians form All Party Parliamentary Group on Down’s Syndrome

Posted in Campaigns, Politics by Matt at WelcometoIllinois on August 27, 2009

Some time ago I lamented the fact that the UK didn’t have an equivalent of the US Congressional Down Syndrome Caucus.

The Down’s Syndrome Association reports that has now been put right with the formation of All Party Parliamentary Group (APPG) on Down’s syndrome including 26 MPs, the DSA and DownsEd “to inform MPs and Lords about many of the issues facing people with Down’s syndrome and their families, and ways in which policy changes can improve their quality of life.”

The DSA reports that the APPG has agreed to supports its Tell it Right campaign to improve the quality of information about Down’s syndrome that is given to parents after they have received a prenatal or postnatal diagnosis of Down’s syndrome via a UK equivalent of the US Prenatally and Postnatally Diagnosed Conditions Awareness Act.

The DSA also reports:

“As well as establishing current public funding for research (medical, social and educational) the Group have also agreed to work to establish two National Working Groups, the first to develop a multi-disciplinary, co-ordinated research strategy for Down’s syndrome, and the second on Best Practice Standards in health and medical care, early development, education (including adults), adult social care and employment support.”

Down’s Syndrome Association campaign to improve information for parents

Posted in Campaigns, Charities, Diagnostic testing, Politics by Matt at WelcometoIllinois on April 16, 2009

June 8-14 is Down’s Syndrome Awareness week in the UK and I just found out that the Down’s Syndrome Association’s campaign this year is a topic that I have written about often: improving the quality of information about Down’s syndrome that is given to parents after they have received a prenatal or postnatal diagnosis of Down’s syndrome.

As the announcement states:

“Research from the Down’s Syndrome Association and the Foundation for People with Learning Disabilities has revealed huge disparities in the quality of information and support for parents when they are given a pre or postnatal diagnosis of Down’s syndrome.

Some have excellent and knowledgeable healthcare professionals. Others are given negative, confusing and unhelpful information.

We think there should be legislation that ensures consistent and accurate information for people who are given a diagnosis of Down’s syndrome or other prenatally and postnatally diagnosed conditions.”

I have previously mentioned that we were luck enough to receive a huge amount of incredibly useful and supportive information about Down’s syndrome, but only after G was born, and while I was very happy to receive it, it did annoy me that the information hadn’t been given to us sooner.

I do not think that the information would have changed our opinion, but I do think it would have made us more comfortable in knowing he support that is available during what it a very difficult and distressing decision-making process.

The DSA notes that the Prenatally and Postnatally Diagnosed Conditions Awareness Act recently became law in the US and has created a petition for to be sent to the UK government for similar legislation to be introduced in the UK.

Needless to say I’ve added my name to the list. If you are a UK citizen and you support the petition’s aims, please do sign up.

Information for new Down’s syndrome parents in the UK

Posted in Campaigns, Support services by Matt at WelcometoIllinois on October 16, 2008

Given our recent experience of having a baby with Down syndrome I thought it would be interesting to take a look at the information given out to parents in the UK, or at least at Queen Charlotte’s & Chelsea hospital.

I was surprised not to receive this leaflet for new parents from the Down’s Syndrome Association, although given that we had known since March that our baby has Down’s syndrome we have already received two or three copies and our experience may be a little different from other parents I suspect.

The New Parents Guide is a really good information resource, with a Q&A, contact information and advice on dealing with the news, how to tell others, and likely implications. It manages to balance discussing some difficult issues with a positive outlook without being patronising.

As for the information we were given after the birth. The first was Supporting People with Down’s Syndrome, again from the Down’s Syndrome Association.

It’s a brief overview of the DSA and what it does but doesn’t really provide much information other than that. I would hope that parents that have just found out that their child has Down’s syndrome would also be provided with the New Parents Guide, although of course they would also be involved in the counselling we received back in April, and I’m pretty sure it given to us then.

The second information resource we were given was Bright Beginnings, from the Down’s Syndrome Research Foundation, an organisation I was not previously aware of.

It’s a much better source of information and includes medical information and stories from parents about what it’s like to bring up a baby with Down’s syndrome, as well as one from a woman with Down’s syndrome. It’s a useful booklet for new parents, although a lot of the information is US-centric and it was evidently published at least four years ago.

Having devoured an enormous amount of information about Down’s syndrome since March there wasn’t a lot in either that was new to us, but I think Bright Beginnings would have been particularly useful had it been handed to us back then.

Of course we are only just entering the network of Down’s syndrome-related care and service providers, and as I’ve previously noted there was a lot more information to come.

Tropic Thunder redux

Posted in Attitudes to disability, Campaigns, Language, Media by Matt at WelcometoIllinois on October 6, 2008

I promised some time ago that, unlike many of the bloggers writing about Ben Stiller’s Tropic Thunder, I intended to see the film the first chance I got so I could make up my own mind about whether it is offensive to people with disabilities.

What with one thing and another, today was the first chance I got as my wife allowed me the decadence of an afternoon at the cinema. The initial response is that I cannot understand what the fuss was all about.

I previously wrote 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” and that I couldn’t “shake the feeling that this was a protest looking for a target.”

Having seen the film I am more convinced than ever that this was the case and that a protest was the wrong strategy. I couldn’t help thinking about the claim made by David Tolleson (executive director of the National Down Syndrome Congress) that he came out of the cinema having seen Tropic Thunder “feeling like I had been assaulted.”

The claim is as laughable as anything in the film. The target of the jokes is so clearly Hollywood, as opposed to people with disabilities, that I believe you would have to have a huge chip on your shoulder to think otherwise.

One of the main issues protesters had against the film was the portrayal by Stiller’s  character (an action film actor trying to be taken seriously) of Simple Jack. In this article from The Guardian, David Tolleson described the portrayal as “shockingly awful”, missing the fact that that was, in fact, the point. The satirical portrayal is also criticised within Tropic Thunder itself.

Having seen the film I find it hard to believe that those leading the protests that had also seen it did not understand that Simple Jack was satirical portrayal of an actor playing someone with intellectual disabilities, as opposed to the sort of ridiculous portrayal of disability seen in other films.

Within the context of Tropic Thunder Simple Jack makes sense, although I can understand that in isolation it would appear offensive. It would appear that DreamWorks made a big mistake with the viral campaign based on Simple Jack that kicked off the protests against Tropic Thunder, and was right to pull it.

The protests could, and perhaps should, have ended there and some of the other complaints against Tropic Thunder are difficult to fathom.

In The Guardian article, Tolleson describes “a segment of the film involving Stiller and Matthew McConaughey. When Stiller’s character says he wants to adopt a child, McConaughey looks at a photo of himself with his arm around a boy vacantly staring into space – clearly meant to have an intellectual disability – and says: ‘At least you get to choose yours. I’m stuck with mine’.”

Like others I do not think it was clear that the boy was meant to have an intellectual disability. In the short period of time that the boy is on the screen I would suggest it is impossible to know for sure if he is supposed to have some sort of disability or just be uncool and uninterested.

If one assumes that protesters against the film understood that it was satire then one has to assume then that they chose to ignore it in order to draw attention to the campaign to eradicate the use of the term “retard”.

That is an honourable campaign and I agree that the word retard should be used sparingly in the media. The word is used many times within Tropic Thunder, but almost exclusively entirely within a single conversation between the characters player by Stiller and Robert Downey Jnr.

I previously argued that its use in this conversation was justified by the context of the characters and the storyline, and this is definitely the case. From that perspective the repeated use in the conversation is much more justifiable isolated use in other films for shock value or to get a cheap laugh.

I fully understand why those that protested against Tropic Thunder are concerned about the portrayal of disability in movies and in reducing the use of the word retard and wish to bring their concerns to the attention of the film industry, but I maintain that in Tropic Thunder they picked the wrong film to protest against.

31 for 21: Down Syndrome Awareness Month

Posted in Campaigns, This blog by Matt at WelcometoIllinois on October 1, 2008

October is apparently Down Syndrome Awareness Month. I’m not sure that extends to this side of the pond, but given that the Internet is global I’ve decided to mark the event by taking part in the 31 for 21 blogathon.

Get It Down; 31 for 21

As is explained on Unringing the Bell, “The goal is to blog everyday for the month of October. 31 days to raise awareness of Down syndrome (a.k.a. Trisomy 21)”.

In order to meet the post volume, and also as an experiment, I’m going to be blogging about more personal matters throughout the month.

You can find links to all the bloggers taking part in 31 for 21 here.

Healthcare for all

Posted in Attitudes to disability, Campaigns, Charities, Learning disability by Matt at WelcometoIllinois on July 29, 2008

Mencap, the UK charity for people with a learning disability, has released the results of an independent inquiry into inequalities experienced by people with learning disabilities and people with mental health problems in receiving healthcare.

The report, titled Healthcare for all, follows the charity’s Death by indifference campaign and has called for change to prevent people with a learning disability dying unnecessarily in NHS care.

As the BBC reports, “The independent inquiry, launched after the deaths of six patients, called for tougher inspections and more training for staff.”

This is just one of the very many things that would never have occurred to me before we found out that our baby has Down’s syndrome. When you read some of the cases cited in Death by indifference it makes you realise how important organisations like Mancap are.

Here’s another small but important Mencap campaign.