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Send a message to Sarah Palin

Posted in Uncategorized by Matt at WelcometoIllinois on March 2, 2010

I’ve been neglecting this blog and my Down’s syndrome-related reading recently so I am very late with this, but if there is anyone reading this that has not seen The Oz Squad’s Letter to Sarah Palin you have only a few days left to add your name to the request for her to speak up apolitically on the use of the r word. The authors were looking to get 100 signatures and they currently have… 99. The letter will be sent in the coming days regardless of the number of signatures, but it would be nice to get it to three figures. The letter can be found here.

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Mother Superior jumped the gun

Posted in Attitudes to disability, Language by Matt at WelcometoIllinois on February 19, 2010

Sarah Palin, the self-appointed Mother Superior of Down’s syndrome, has been at it again, this time describing an episode of Family Guy featuring a character with Down’s syndrome that made reference to being her daughter as “another kick in the gut”.

I haven’t seen the Family Guy episode, it has not aired in the UK yet as far as I’m aware, but I have watched the clips on YouTube and I just don’t get what Palin is upset about.

So a character with Down’s syndrome states that her mother is the former governor of Alaska – big deal. How is that insulting to people with Down’s syndrome, or Trig or Sarah Palin? Am I missing something here? Seriously, I fail to see how this is mocking Trig Palin or in any way damaging to people with special needs, and I’ve just watched Palin trying to explain it herself

Even the Down syndrome girl song is extremely tame by Family Guy standards, and as Logan at Disposable writes, from what I have seen the show pretty much normalised Down’s syndrome.

Palin’s criticism appears to suggest that featuring a character with Down’s syndrome on this sort of show is, by definition, offensive (unless it is satire of course), while some of the reports supporting Palin’s view also appear to have jumped to conclusions.

“Comedic mimicry of retarded people is obnoxious,” states the Gawker. Which is true except, there’s that R word again, and besides – where was the mimicry?

The character in question was played by Andrea Fay Friedman – an actress with Down’s syndrome, who had this to say: “I thought the line was very funny. I think the word is ‘sarcasm.'”

Friedman also said this:

“In my family we think laughing is good. My parents raised me to have a sense of humor and to live a normal life. My mother did not carry me around under her arm like a loaf of French bread the way former Gov. Palin carries her son Trig around, looking for sympathy and votes.”

Arf! Now that is a kick in the gut.

Sarah Palin is a f—ing hypocrite

Posted in Attitudes to disability, Language, Politics by Matt at WelcometoIllinois on February 8, 2010

Rahm Emanuel has been rightly criticized for his description of liberals activists as “f—ing retarded”, including a call from Sarah Palin for him to be fired as White House chief of staff.

“Just as we’d be appalled if any public figure of Rahm’s stature ever used the “N-word” or other such inappropriate language, Rahm’s slur on all God’s children with cognitive and developmental disabilities — and the people who love them — is unacceptable, and it’s heartbreaking.”

That’s just what you’d expect when it comes to the self-styled “friend and advocate” of special-needs families. Of course the fact that Emanuel’s comment enabled Palin to criticize her political opponents had nothing to do with it.

Palin also appeared to have taken a dim view of Rush Limbaugh’s repeated use of the word “retard” in discussing the Emanuel controversy on his radio show.

Here’s some edited highlights of Limbaugh’s “satire” for those that missed it. The full transcript is also available.

  • “But our politically correct society is acting like some giant insult’s taken place by calling a bunch of people who are “retards,” “retards.””
  • “So now there’s going to be a meeting, there’s going to be a “Retard” Summit at the White House.”
  • “Obama is taking a short bus, little yellow bus full of “retards” — “F-ing retards” — to Las Vegas for the weekend.”
  • Limbaugh was clearly taking the opportunity to draw attention to the inappropriate language used by Emanuel, but his obvious revelry in doing so suggests, and the following discussion with a caller to the show demonstrates, that he simply does not get it.

    CALLER: The reason they were so offensive is because by using the term “retarded” or “retards” as a term of opprobrium or derision is insulting to all persons with mental disability… I just felt as though your comment, it seemed to me to underline the idea that the insult was to the Democrats, and it’s not, the insult is to the people with disabilities.

    RUSH: No, no, no. I know the insult is to retarded people but those are not my words.

    Either way, as Palin’s spokesperson stated “it doesn’t matter who says the “r” word: it should no longer be part of our lexicon”.

    Except if the person who says its happens to be an influential opinion leader in the conservative movement, it would seem. “Rush Limbaugh was using satire,” said Down’s syndrome’s very own “Mother Superior” on Sunday.

    “I didn’t hear Rush Limbaugh calling a group of people whom he did not agree with “f’ing retards.” And we did know that Rahm Emanuel — it’s been reported — did say that. There’s a big difference there.”

    She’s right, there is a big difference between someone using an off-hand remark, albeit a highly inappropriate one, in a private conversation and then apologizing for doing so, and someone repeatedly using a phrase they apparently understand to be offensive in order to score cheap political points.

    How G survived the National Health Service death panels

    Posted in Attitudes to disability, Support services, Therapeutic treatments by Matt at WelcometoIllinois on August 8, 2009

    Sarah Palin has let loose on the topic of health care reform. In her latest Facebook outburst, as reported by Patricia E. Bauer among others, she stated:

    “The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,’ whether they are worthy of health care. Such a system is downright evil.”

    Absolutely bonkers. I’m not going to bother pointing out the numerous factual inaccuracies in that statement. Fact Check points out that “nothing in the legislation would carry out such a bleak vision”, while PolitiFact rates the statement “Pants on Fire!”

    What I will do, as someone who lives in a country with government-supplied health care, is confirm that there are no death panels on the National Health Service – at least not that I am aware of. What we do have, however, is multiple health visitors, portage workers, speech and language therapists, and physical therapists, not to mention heart scans, hearing tests, and learning assessments, all supplied free of charge and regardless of our income. Had G needed it, he would also have been able to have an operation to fix any problems associated with his heart or any other organs, again free of charge regardless of our income.

    As a writer on Huliq news points out, “what Sarah Palin fails to note, or perhaps does but intentionally omits, is that such a ‘death panel’ of bureaucrats already exists. It’s called the insurance companies, and the employees at them which deny health care left and right.”

    The NHS isn’t perfect, but having read numerous accounts of parents hit with massive hospital bills for the delivery of their children and the massive cost of health care insurance for children with disabilities, given the choice between the UK and US systems I know what I’d pick.

    Palin delivers commitment for special needs children

    Posted in Politics, Scientific research, Support services by Matt at WelcometoIllinois on October 25, 2008

    Given my rant about Sarah Palin yesterday the sense of objectivity that remains from my days as a journalist compels me to report on the commitment for special needs funding unveiled by Palin yesterday.

    According to the official announcement the commitment covers:

    More Choice

  • Allow Parents Of Students With Disabilities To Choose The Best School For Their Child.
  • Make Explicit That Federal Funds Are Fully Portable.
  • Fully Fund The Individuals With Disabilities Education Act (IDEA)

  • The McCain Administration Will Fully Fund The IDEA.
  • Using a phased-in increase of $3 billion annually in order to reach the full funding in five years will cost an additional $45 billion over five years.
  • Reform And Refocus

  • Provide Information And Assistance To Families Of Infants And Toddlers With Special Needs And Up-To-Date Information For Medical Professionals.
  • Increase Funding For States To Improve Services To Families With Infants And Toddlers.
  • Improve Services To Students With Disabilities In High Schools And Community Colleges.
  • I still maintain that if the McCain campaign really cared about funding for special needs the issue would have been added a lot sooner than with eleven days of the campaign remaining. You can find Barack Obama’s plan for disabilities and funding IDEA here.

    Additionally, Palin appears to have put her foot in it once again with a vague reference to “fruit fly research in Paris, France” of all places. (See Memo To Sarah Palin: Fruit Fly Research Has Led To Advances In Understanding Autism).

    Even if you assume you was referring specifically to the $211,509 to Representative Mike Thompson for olive fruit fly research in Paris, France, it debatable whether that has “little or nothing to do with the public good” as she claimed.

    “The olive fruit fly has infested thousands of California olive groves and is the single largest threat to the U.S. olive and olive oil industries,” said Thompson while defending the spending bill in April.

    Having a child with Down’s syndrome is not a political policy

    Posted in Politics, Termination by Matt at WelcometoIllinois on October 24, 2008

    Would Sarah Palin have got the Republican vice presidential candidate nomination if her son had not been born with Down’s syndrome?

    It’s a serious question that has been highlighted by recent public comments by Palin and her use of Trig as a political prop to promote herself as a symbol for the Pro-life movement.

    It’s also a question I think people should be asking themselves as they prepare to elect two of the most important political figures in the world.

    When I wrote back in August that “I can’t help feeling slightly disconcerted about some of the media portrayal of her, and her son, as a symbol of the Pro-Life movement” this is exactly what I had in mind (“Palin: God Gave Me a Down Syndrome Child To Help the Pro-Life Movement”).

    I also wrote that “I don’t think Palin is responsible for the media’s portrayal of her decision to go ahead and have her son”. However I was proved wrong by her declaration that “I’ve always had near and dear to my heart the mission of protecting the sanctity of life and being pro-life, a hardcore pro-lifer, but I think this opportunity for me to really be walking the walk and not just talking the talk.”

    There is something desperately sad about the fact that someone is prepared to use the health of their child as an opportunity to push forward their views in an attempt win votes for political office. The last few weeks have seen an increase in the Republican party’s use of the ‘disability card’.

    When asked to explains the qualities of his running mate during the third presidential debate, John MCain had little to say other than that she is a reformer and she “understands special-needs families”.

    That statement would be understandable if McCain’s campaign had anything to say about children with special needs. As I have mentioned before, it does not.

    Not only that, but Palin herself has precious little of any substance to say about special needs children either, other than that she will be “an advocate” (and the fact that she opposes Colorado’s proposed Amendment 51, which would raise taxes 2 cents on every $10 to increase disability services).

    This report from KVBC is a prime example.

    Alaska Governor and Republican vice presidential nominee Sarah Palin says autism is an issue “near and dear” to her heart and she can’t wait to get to work helping more than 5,000 Nevada families affected by it. However, when pressed, she was unable to provide details on a plan to do that.

    Palin did not name any specific expenditure she wanted to cut in favor of funding for autism research or services, nor did she name what specific programs she’d like to fund in order to help those families.

    Palin has a nephew stricken with autism and a son with Down’s syndrome. She often tells crowds she will be an advocate for disabled children in Washington.

    “Here’s the difference between John McCain and our ticket and Barack Obama and Joe Biden,” she said. “We don’t just talk the talk, we walk the walk. And that’s why in not just that first speech, but in every speech I give, I talk about being an advocate and a friend in the White House for our families who have members who have these special needs.”

    She is right about there being a difference between the two campaigns. It’s called a policy. The report continues:

    McCain has supported autism initiatives in the past, but has not articulated how he plans to advocate for those families from the White House.

    Barack Obama has released a specific plan to help the families dealing with Autism Spectrum Disorder. He has promised $1 billion annually in support and services by the end of his first term as president. He has also promised to appoint a Federal Autism Spectrum Disorder Coordinator to oversee all federal efforts and fully fund the Combating Autism Act.

    The Obama campaign released several documents detailing its plans to help Americans with disabilities.

    Given the lack of a detailed plan, what does Palin mean when she says says she is walking the walk? It’s a euphemism that means, quite simply: “I am so Pro-life I had a disabled child, even though I knew in advance that it would have Down’s syndrome”.

    I will leave aside the fact that plenty of non-Pro-lifers might also make the same decision and that it reveals the hypocrisy among Pro-lifers that continuing with the pregnancy of a disabled child is still seen as extraordinary and simply state that if you’re going to run for office on a single issue like being Pro-life at least have the decency to come out and say so rather than wrapping it up as advocacy for disability.

    Palin is reportedly due to give her first policy speech on Friday on the subject of funding for special education (which means I may later be eating my words. We’ll see.) Even that begs the question as to why Palin’s first policy speech is on an issue that is not part of the McCain-Palin agenda.

    It appears to have been triggered by the response of the public to her and her family, rather than any particular position on special education from the McCain campaign. This is all well and good in terms of raising awareness for children with special needs, but shouldn’t running for Vice President be about more than personal agendas?

    Maybe my view of Pain has been clouded by my perspective and I only see reports about her that deal with her attitude to having a Down’s syndrome child. Having said that, perhaps it is understandable that the Republican party went with special needs for her first policy speech. What were the choices?

    Foreign policy?

    The economy?

    Current affairs?

    Legislation?

    Regulation?

    The vice-presidency?

    Which presidential ticket is the real advocate for disability?

    Posted in Learning disability, Politics, Support services, Termination by Matt at WelcometoIllinois on October 5, 2008

    Having commented on Sarah Palin’s nomination as the Republican VP candidate and the subsequent increase in the media’s coverage of Down’s syndrome I decided not to write about the election on this blog, mainly due to the fact that I didn’t want to be seen as an outsider telling people how to vote in their own election

    However, as a parent of a child with Down’s syndrome, I cannot help following coverage of Palin’s candidacy, and have read a couple of articles recently that motivated me to comment. I hope Americans will appreciate an independent viewpoint.

    Like Disposablebrain I have been surprised by the amount of “special needs advocates” who appear to have given Palin their support because she has a son with Down’s syndrome.

    I’m not saying Palin doesn’t deserve respect for raising a child with Down’s syndrome but I am saying that is not a reason to to vote someone into the White House.

    The suggestion that anyone with or involved with Down’s syndrome is somehow obligated to support Palin is also pretty offensive – like suggesting all women must support her, or all ethnic minorities must support Obama.

    I also think that the eagerness of some to bow down to Palin leads to exaggeration. Witness this article that seeks to give credit to Palin (and more specifically her son, but I’ll leave the deification of Trig Palin for another post) for Congress passing the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

    I wrote back in August that it was naive to think that Palin would push forward legislation and rights for people with disabilities if she were elected. Palin has done little so far to change my opinion.

    She has of course promised to provide families with special-needs children “a friend and advocate in the White House” although as the report of that promise points out “Palin did not say what her White House advocacy would mean.”

    While Palin’s candidacy has undoubtedly increased the quantity of debate about Down’s syndrome, this article makes the point that the quality of the debate hasn’t increased accordingly.

    “What I want is a serious national conversation about raising children with disabilities — the way that government, schools, churches, doctors, HMOs, and most of all friends and families can help us… Let’s talk about the federal mandates that order, but do not fund, early intervention. Let’s talk about universal health care and special education. Let’s talk about how to help our children find meaningful lives as adults.”

    All of these are issues that do not appear to be being addressed by McCain-Palin, as far as I can see. They do begin to be addressed by Barack Obama’s plan to empower Americans with disabilities, however. The plan aims to:

    “First, provide Americans with disabilities with the educational opportunities they need to succeed.

    Second, end discrimination and promote equal opportunity.

    Third, increase the employment rate of workers with disabilities.

    And fourth, support independent, community-based living for Americans with disabilities.”

    If someone can point me to a comparable commitment to people with disabilities from McCain-Palin I’ll gladly link to it here.

    Many Palin supporters have praised her decision to continue her pregnancy with Trig, noting that when it comes to her Pro-life beliefs actions speak louder than words.

    I would argue that the same is true when it comes to supporting disability. So far we’ve heard a few words from McCain-Palin, but the action (PDF) is coming from Obama-Biden.

    UPDATE – See also this article in the Huffington Post, which goes into much more detail on the respective policies – UPDATE

    I understand that some disability advocates are disappointed with Obama’s track record on votes related to abortion, and I’m not claiming that either side has all the answers, but I do think that abortion and support for people with disabilities are different issues, and as the article above states, when it comes to disability the debate needs to be focused on the latter rather than the former.

    I’m not going to tell people how they should vote, but I do want to make the point that if disability advocacy is a significant influence on your decision then people should look beyond family to policy and then make up their minds.

    The Palin effect – media begins to take DS seriously

    Posted in Ability, Business, Media, Politics, Religion (and the lack of it), Scientific research, Screening, Surveys, Termination by Matt at WelcometoIllinois on September 8, 2008

    While I remain concerned about the overall media portrayal of Sarah Palin and her decision to continue with the birth of her son, I have to admit that her profile has prompted some excellent articles about Down’s syndrome.

    Here’s an excellent article from ABC News about the new non-invasive screening test from Sequenom. Nothing very unusual about the topic, Sequenom has been getting a lot of press based on its promise to provide earlier, more accurate results.

    The interesting thing about the ABC News report is that it digs much deeper into the subject area than most reports would usually do, covering the ethics of testing for Down’s syndrome, abortion rates, details of the test, issues related to current testing procedures, the negative approach of doctors when dealing with mothers expecting a child with DS, medical issues related to Down’s, the opportunities for people with Down’s syndrome, and the negative aspects of early screening.

    Would all of those aspects of the story have been given column inches without the Palin angle? Maybe, but I doubt it.

    Another interesting article I read recently is this one on Health.com about the influence of religion on the decision to continue with the pregnancy of a child with Down’s syndrome.

    It even encouraged me to break my self-imposed ban on religious content, given that it raises some of the same questions I did in imposing that ban.

    “I wanted to see if there was scientific data on whether religiously minded people are more likely to continue a Down syndrome pregnancy than others,” writes Andrea Useem.

    “The first thing I found was that termination rates for prenatally diagnosed Down syndrome pregnancies are pretty high… But rates of religious affiliation are similarly high… My unscientific conclusion from looking at these numbers? Many people who end pregnancies diagnosed with Down syndrome probably consider themselves to be religious or say they believe in God,” she continues.

    A director of bioethics comments “on a strictly anecdotal basis” that “she believes families who choose to continue with Down syndrome pregnancies are ‘disproportionately’ religious, coming from strong Christian or Jewish backgrounds.”

    However, she also indicates, as I believe, that the decision is a matter of humanity, which just happens to manifest itself in the faith of religious believers (and just plain old morality in non-believers):

    “I think for many people, [a Down syndrome pregnancy] is a critical test of your own capacities and sense of life’s meaning and values,” Zoloth says. “Many people make those decisions by recourse to their religion, but not all. Many make recourse to other sources of faith, and perhaps their own sense of humanity.”

    Anyway once again I doubt that the article would have been covered in quite the same way without Palin’s profile and for that, whatever you think of her politics, I guess we should be grateful.

    Sarah Palin, Down’s syndrome, and the race for the White House

    Posted in Media, Politics, Termination by Matt at WelcometoIllinois on August 31, 2008

    It’s hard to ignore the news that Sarah Palin has been picked by John McCain as his VP candidate running mate in the race for the White House. For those that aren’t aware, Palin is interesting to this blog given that her fifth child, Trig, has Down’s syndrome.

    This fact has prompted some disability/Pro-Life advocates to rejoice at the new of her appointment, suggesting that she will push forward rights for people with disabilities in general, and Down’s syndrome in particular, and may even prompt a change in attitudes related to the termination of fetuses with disabilities.

    It’s a nice thought, but it is pretty naive. As Blogging Down Syndrome points out, Palin is likely to vote with her more senior running mate. “I don’t know McCain considers himself anti-disability so much as he just doesn’t care. We are not his issue and Gov. Palin is not going to make us his issue.”

    Compare the fact that David Cameron, leader of the opposition Conservative Party in the UK, has a son with cerebral palsy. You don’t see him going out of his way to pro-disability issues. As he proved recently, he is a pragmatist on that issue. When it comes to legislation, political interests tend to outweigh personal interests.

    UPDATE – Also I completely forgot that the Prime Minister, Gordon Brown, has a son with cystic fibrosis, which is a testament to how private he keeps his private life – UPDATE

    Maybe Palin is a different politician, time will tell, and she will certainly raise the profile of Down’s syndrome in the US. I can’t help feeling slightly disconcerted about some of the media portrayal of her, and her son, as a symbol of the Pro-Life movement, however.

    As previously pointed out on Blogging Down Syndrome there is a tendency in some parts of the media to celebrate her decision to continue with the birth of her son, who she was aware had Down’s syndrome, as proof of her Pro-Life credentials.

    “”I have a profoundly disabled child myself, and I am not sure I could make the decision she made to have that child and put her money where her mouth is as a pro-life woman,” a Pro-Choice Republican supporter is apparently quoted as saying by the Washington Times. (I say apparently because I have some experience of journalism and that and the rest of her comments read like a supplied quote to me).

    Take this excerpt from Sky News for example: “An evangelical Christian who is pro-gun and pro-life – a stance she backed up by bringing her fifth child to full term despite knowing it would have Down’s syndrome – she has plenty of what stands for good sense in conservative circles.”

    To me that sentence says more about the media’s attitude to disability than it does termination – the implication is that it would have been reasonable for Palin to have rejected her principles and have the child aborted, as she knew it had Down’s syndrome, and for not doing so she is to be celebrated.

    This column also makes the rather absurd notion that by continuing with her pregnancy Palin made herself a symbol of both the Pro-Life and Pro-Choice movements given that “she exercised her right to have that baby. If that isn’t pro-choice, what is?” Forgive me my ignorance, but if she was being true to her principles then there was no choice to make, was there?

    Less prominent Pro-Lifers must be cursing the fact that they gave birth to ‘normal’ children. (In case it is unclear I am being sarcastic here.)

    McCain’s choice of Palin also guarantees that abortion is going to be one of the big issues in this election. And it is not going to be pretty. (See RNC mulls Limbaugh abortion Obama jab, and Two Questions for Barack Following Palin Nomination). Unfortunately, at the centre of it all is going to be Palin’s son and there have also already been reports casting doubt on the official story of his birth.

    To be clear, I don’t think Palin is reponsible for the media’s portayal of her decision to go ahead and have her son, but I can’t escape the feeling that the media will be using Palin and her son to advance agendas on both sides. I have a feeling this is not going to have a happy ending.