Special education needs and the UK election
Having stuck my beak into the US election, it’s funny that I don’t feel the same need to blog about the current UK election campaign in the context of Down’s syndrome and special needs (maybe because there aren’t such, ahem, polarizing characters in the UK).
Anyway, from The Guardian, by way of the Down’s Syndrome Association, here’s how the three major parties compare on attitudes to Special Education Needs (SEN):
Labour
“Parents of children with special educational needs would have the right to a choice of school, like other parents. Ofsted, the children’s inspectorate, would be given responsibility for inspecting schools on SEN, information for parents would be improved and the tribunal process made easier, so that children with SEN and disabilities can access the auxiliary aids they need in schools. Other intiativies already under way will remain, such as the Achievement for All pilots to improve outcomes for children with SEN, funding for 4,000 additional teachers to undertake specialist dyslexia training by 2011, the requirement for SEN co-ordinators to have qualified teacher status by September, and the review of the supply of those teaching children with profound and multiple learning disabilities.”
Conservative
“On special educational needs, the Tories would impose a moratorium on the “ideologically driven” closure of special schools, ending the bias towards the inclusion of children with special needs in mainstream schools.”
Liberal Democrats
“Children would take a diagnostic assessment when they start school. The assessment would look at reading, comprehension, numeracy, communication and writing skills. The results would enable teachers to identify any extra support needed. The Lib Dems would also end the policy of trying to reduce the number of children educated in special schools and instead would encourage the co-location of special schools alongside mainstream schools. For those educated in mainstream schools, part of the extra £2.5bn investment would go to help teachers provide more individual support, one-to-one tuition and reading or maths recovery. Teacher training and the continuous professional development of teachers would also be improved to ensure that all teachers learn how to recognise SEN and provide appropriate support.”
One of those stands out for me, although not for the right reasons.
Send a message to Sarah Palin
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.
Mother Superior jumped the gun
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
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.
On terminations and survival rates
I recently wrote about the theory that an increase in the quality of care and medication had contributed to the increased number of children born with Down’s syndrome in the US and UK (along with higher maternal age of course).
A recent study of survival rates of children with congenital abnormalities backs that up. According to a Medscape report based on a story in the Lancet, “medical advances from 1985 through 2003… increased in the likelihood of survival.”
While that seems pretty straightforward another finding of the study has me perplexed.
“Pregnancy termination played a significant role in boosting survival rates. ‘The proportion of terminations of pregnancy for fetal anomaly increased throughout the study period (from 12.4% in 1985 to 18.3% in 2003) and, together with year of birth, was an independent predictor of increased survival,’ the authors write.”
Now I can fully understand how increased terminations of babies with congenital abnormalities would have an impact on the overall infant mortality rate but are the researchers, or the reporter, seriously suggesting that there is a causal relationship between increased terminations and increased survival rates?
The statement “pregnancy termination played a significant role in boosting survival rates” suggests so. As does the headline: “Treatment Advances, Early Terminations Contribute to Higher Survival Rates in Children With Congenital Anomalies”.
I’ve been racking my brains trying to work out how increased terminations could lead to the babies that are born with congenital abnormalities being more likely to live longer, but I can’t see it. Without access to the Lancet report it is hard to tell whether the original research supports the Medscape headline, but my guess is that Medscape has taken a statement that was true for the general population and applied it specifically to the population of children with congenital abnormalities.
The difference between treatment and cure
A few months ago I briefly mentioned some research underway at the Stanford University School of Medicine and Lucile Packard Children’s Hospital that could eventually lead to treatments that could improve cognition in people with Down’s syndrome, or at least delay the decline of cognitive function.
The research has hit the headlines this week thanks to a New York Times post questioning the need for a “cure” for Down’s syndrome.
The NYT post concludes by asking “if there were a cure for your child that would fundamentally change who he is, would you welcome it?” It’s an interesting theoretical question, but one that is unlikely to be raised by the research.
As Dr. Ahmad Salehi, M.D., Ph.D., the lead researcher on the Stanford University study, noted in response to a similar question, “restoring a rather limited aspect of learning and memory in a mouse model of Down syndrome is far from being a cure”.
It also only addresses cognitive function, which is one of many potential effects of Down’s syndrome. Others, such as heart defects and thyroid problems, are already treated by medical science, Why would you not also treat cognitive ability, were that possible?
I do understand, however, why some parents would be wary of a theoretical cure. I previously mentioned, twice, that while I am in favour of using drugs to improve life for people with Down’s syndrome, gene therapy (or praying to remove the effects of Down’s syndrome in the latter example) feels like quite a different proposition as it raises questions about fundamentally changing the personality of the recipient.
Getting it wrong and telling it right
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.
“He’s a little Down’s boy isn’t he?”
Since we received the diagnosis that G would be born with Down’s syndrome one of the things I have feared most, to be completely honest, is the comments that would be made by complete strangers. I have read and heard some horrendous stories of strangers feeling the need to pass comment on the fact that a child has Down’s syndrome – offering the parent pity or unwelcome advice (or insults).
It took 15 months, but recently while out Christmas shopping I had my first experience of someone commenting on the fact that G has Down’s syndrome. Not just anyone, but the type of complete stranger I fear most: the kindly old lady (KOL).
I am used to be stopped by KOLs while out shopping since they are naturally attracted to babies/children and their favourite variety is one with ginger hair. They swarm around J’s “orange hair” (as he like’s to call it) like bees around honey.
Attracted as usual to J’s personal Belisha beacon this particular KOL quickly moved on to G and his lack of gingerness before surprising me by asking “he’s a little Down’s boy isn’t he?”
The question was so matter-of-fact that I could only respond in the same way. “Yes he is,” I replied.
The KOL told me all about the group of teenagers with Down’s syndrome that goes to her local swimming pool and “really enjoy themselves” (a bit random, a bit patronising but she meant well and I was still too disarmed by the fact that I was talking to a complete stranger about Down’s syndrome to do anything other than smile and nod).
“So he’ll have a few challenges when he’s older,” she continued, before adding something about how he didn’t seem too badly effected. I don’t really remember what I offered in response to that. Again her tone was so matter-of-fact that the comment seemed entirely reasonable thing to say.
So that was my first experience of discussing the fact that G has Down’s syndrome with a complete stranger in public. Something tells me it won’t be our last. Especially if we keep going shopping with J.
Survey to help new parents adjust to Down’s syndrome diagnosis
“Texas Tech University and Kansas State University researchers are seeking participants in an online survey to help develop support information and resources for parents of children with Down syndrome and the professionals who work with them” reports newswise.
The survey is available here and doesn’t take long to complete, depending on how much information you feel like sharing.
Researchers hope to gather information on how parents coped with their child’s diagnosis and how it impacted their relationship and outlook on the future in order to “pinpoint common practices in families who have successfully adjusted to a Down syndrome diagnosis”.
Welcome to Illinois 
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