Words, language, attitudes and actions

There's a campaign to encourage people to rethink the words they choose to write and say. Today, March 3 2010, has been chosen as a day to focus on these issues.

Words matter, language matters. When people decide to use as slurs and insults, words that originated as diagnostic labels for various disabilities and/or for various categories of mental illness, real and manufactured ("hysteria") then they contribute to a culture that marginalises people. Disabled people are dehumanised by these words. A society that tolerates the use of slurs like r*t*rd and sp*st*c as equivalent to stupid, useless, pathetic, hateful or annoying, legitimises the hatred that leads to the abuse, murder, forced drugging and sterilisation and discarding of so many disabled people in this country and all around the world.

Some people whine about the "language police," "PC gone mad," their "right to free speech" and how "no one has a right not to be offended." They make a case to keep insulting, belittling, minimising and dehumanising people like my son who have developmental disabilities just so they can slag off their mates or sound hip and cool on someone's blog or YouTube comments. But if someone wants to keep acting like an entitled and callous arse, that's their call.

There's a fantastic series on Ableist Language at the FWD/Forward blog discussing specific words, their origin, the damage they can do and suggesting alternatives. As expected, the usual arguments in favour of the right to offend and destroy and display your laziness and lack of consideration say whatever the hell you want are raised. These are deconstructed in this great post.

There's one argument the non-creative who prefer to keep right on insulting and degrading developmentally disabled people use that isn't in the list. It's the "euphemism treadmill" argument, and it's explained in this blog comment;

This sort of process (words becoming offensive and being replaced by new terms that end up becoming pejorative over time only to be replaced by more and more cumbersome and ridiculous expressions and so on and so forth ad infinitum) is known as the euphemism treadmill. And people who keep insisting on keeping this treadmill going are fucking retards (I hope the actual innocent retards forgive me for using this innocent word pejoratively).

The Blog owner responded to this inanity with, "Fucking right!"

Can I have a facepalm?

OK, that's me shut up then. I wouldn't want to contribute to the "euphemism treadmill." Keeping all hip and raging against the PC police is far more important than listening to the people whose lives are directly negatively affected by your words and committing to making a few simple substitutions.

My understanding of what this commenter calls the "euphemism treadmill" is the positive effect of disability activists who have influenced the language used to describe people with their attributes. "Wheelchair bound" is out because people who use wheelchairs find the term fucking ridiculous and limiting. If people who are blind prefer not to be referred to as a "the blind" and people who have epilepsy quite reasonably don't want to be called "epileptics" then should those of us who are not in these groups get all bothered by their "disgraceful assault on our right to speak as we see fit"? Should we return to a more paternalistic era (as if this one's not bad enough) when we allowed doctors, psychologists educators and others with power-over to dictate the terms used to describe people, or might it be seen as fairer that, as people gain more agency over their lives, they and only they have the moral authority to dictate the language used to describe these lives.

There's more about this on Here Be Dragons post; Ban the R-Treatment:

A lot of people think that The R-Word campaign is just about a disablist slur, but it’s the medicalization of atypical learning and social behaviour that’s dehumanizing, hence the basis of all slurs for people considered inferior are medical terms which caused the euphemism treadmill in the first place.

Another thing about the previous comment is the distinction made between the "fucking r*t*rds" behind this drive to substitute language that demeans with the language of their choice and the "actual innocent r*t*rds" whom s/he hopes will forgive such pejorative use of this "innocent" word.

FAIL!

They're the same people, these "innocents" and the ones who annoy you (and confuse you?) so much with their attempt to improve they way they're discussed and to stop people using using their discarded diagnoses as the epitome of the put down. And what makes them "innocent" anyway? They're almost all adults so in all likelihood, they're as much of a sinner as you or I! I hate this trope that developmentally disabled people are seen as innocent and child-like even when they're full grown men and women. It's another way in which they're dehumanised.

If you want to, go ahead and use r*t*rd and similar terms as insults. I reserve the right to think of you who do as arrogant, rude, insensitive twerps. To the rest of you who might decide that on reflection, it might be decent to chose other words that don't have such power to hurt and harm, please pledge your support to eliminate the demeaning use of the r-word.

Loads of books, and a punch to the head

Duncan and I took his brother and sister to summer scheme. He asked to look in the charity shop and being in no hurry, I parked the car and off we went. Well talk about hitting pay dirt. Someone must have cleared their book shelves and dropped the boxes off very recently. There were a good few children's book spilling out so I asked if I could dig through the lot and the man working there, a good guy as I've learned from previous visits, said to work away. So we plonked ourselves on the floor and shifted through the boxes. Duncan made a little pile of those he was interested in and I made a huge pile of my own. Then ecstasy, we found 3 Thomas the Tank Buzz books, Duncan's absolute favourites. I hauled the booty to the pay desk and told the man I'd probably need to nip over to the ATM as I didn't think the £10 note in my purse would cover it. He asked me for a fiver. No way, I said, take a tenner for all those. Nah, said he, give me £5 and tell all your friends to come over and look through our stuff. So off you go to to your local Action Cancer shop. They are the best.

Here's what I bought:

1. 2 Mister Men books
2. 3 Thomas the Tank Buzz books
3. 2 children's videos
4. Winnie the Pooh Ladybird book
5. Alexandre Dumas- The Three Musketeers
6. The Usborne Internet Linked Science Encyclopedia (beautiful colour hardback)
7. James Joyce - 3 novel hardback
8. Robert Graves- Greek Myths
9. Anthony Burgess- A Clockwork Orange
10. Teach Yourself Irish
11. Marcel Proust -Remembrance of Things Past
12. Anita Shreve- The Pilot's Wife
13. Ian Rankin - A Question of Blood (I love me some Rebus.)
14. Minette Walters- Fox Evil
15. Kazuo Ishiguro- The Unconsoled
16. The Oxford Library of English Poetry Vols II and III
17. Francosi Mauriac - The Knot of Vampires
18. Leo Tolstoy- Anna Karenina
19. Sylvia Plath- The Bell Jar
    

How fantastic is that? I don't think I've read any of these before.

Duncan was so grateful, telling the man "thank you very much" and on we went to the pet shop to buy a new run for the guinea pigs. We passed the indoor play centre and he asked to go in. Again, feeling very spontaneous, I consented. We were the first people there. For a while after it was just Duncan and a younger boy, then a large group of 6-10 year old boys arrived. I had to redirect Duncan from the area reserved for 1-3 year olds, as he liked the slide there best of all. He was a bit frightened of going up to the first level of the frame for children his age. But when the gang of children arrived he felt a bit braver and followed them up the ladder and had fun in that area. I stuck by him all the time, moving about to keep him in sight. When his play time was almost over, I witnessed him and another boy bump each other going up some steps. They each tried to pushed past the other a bit then I watched as the other boy raised his fist and punched Duncan hard on the forehead. I called out to him to quit, and asked Duncan to come to me. He was very upset. He fell into my arms, tears streaming. He shook and shouted and bit at my shoulders saying over and over he was sad, angry and a bad and horrible boy. I just held him and sympathised and agreed that he was angry and felt bad. We moved to the chairs and he had a drink of water and sat on my lap for a while crying. One of the staff checked he was OK, she'd seen the whole thing. One of the woman accompanying the group of boys, one of which was little master hit a lot, came over to say sorry too. A while later she brought the boy with her and he said sorry. Duncan just said sorry too. As we left the other staff member asked after Duncan. They had been very kind, oh yeah, they'd given me a free cup of tea earlier when I hadn't enough change to buy Duncan's bottle of water and my tea. In the end, Duncan had enjoyed himself prior to the incident and I think he will want to go back again some time.

And the guinea pigs love their new run, they're popping (and pooping) all around while Pippi looks on greedily/curiously.

I'm a Mummy and I'll vent if I want to

I am so sick of this. There are some people who choose publicise their feeling of rage, hate and shock at having given birth to autistic children. On Gonzo's blog I read about one woman's horrible bile-filled blog post about her daughter. This child is 8 years old. Her mum describes her as "recovered from autism" whatever that means. But this girl still causes her mum so much pain because she just isn't how she's supposed to be (link broken deliberately). The mother complains that her daughter isn't into dolls and make up, but prefers to goof about, play computer games or ride a scooter. I mean, how dare the child resist the gender role assigned to her. If she doesn't start with the make up by 8 she'll never know how to apply liquid liner properly.

But mum has more to say. She is jealous of the parents whose children have cancer! She wanted to punch her cousin in the face for sympathising about another cousin's child going through surgery, because her troubles were bigger; "my [recovered] daughter's MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one."

It's not good enough. It can't be right to get off on vitriolic hate speech about your own child like that.

Then this morning at Cat in a Dog's World I read that that Mummy venting had struck again. In a New York Times blog, a woman with a son with Asperger's felt free to tell the world how rotten her life is because of the way her son behaves. She blames all of this on his autism. Does she think this venting will make her life better? Does she think her portrayal of what is titled "the unvarnished reality of autism" will increase understanding of autism and autistic people or will it, as I suspect, make the public ever more fearful of those with an atypical cognitive phenotype? Some of what she describes is society's reaction to her son. I face the scowls when I'm out with Duncan too but that's not his problem but that of the mean ninnies who judge him and me.

She even says, "my son has been doing much better lately" but still tells her tale of woe as if it's all still happening.

I cannot say that her son is not as hard to live with as she says, but there are lots of children who are not autistic who are bloody hard work too. Choosing to become a parent means you have to expect the unexpected. Autism, or any disability, doesn't necessarily have to bring pain and suffering to parents. Different people react in different ways to difficult situations. While I am stressed and upset at times by things I must deal with, some of them related to my son's autism and some not, I don't see my life as a litany of horror. I get over it and keep going as best I can.

What she describes is NOT the unvarnished reality of autism, it's just how she chooses to characterise it.

I also disagree with the implication, by "it's time to stop mincing words" that until now, no one was telling about how horrid autism really is. That's nonsense. There are newspaper articles nearly every week by parents and siblings venting about how terrible the autism is and how it's ruined their lives. We have children's charities depicting autism as a monster. Massive USA autism organisation Autism Speaks released a staged film a few years ago which was all about how haaard life is for women with autistic offspring. Quack cures are featured on health pages, along with pictures of grim faced parents describing that they just had to try the calcium stripping chelation drugs/chemical castration drugs/homoeopathy/shaman therapy/exorcism/chiropractic manipulation because life was too awful before. Loads of books have been published giving insight into the "real and raw" suffering of these parents. How the hell can any of these people claim that they need to speak out and share their pain as if it's not been told of hundreds of times in very public places before?

And aside from how this affects the perception of autism in society, how do you think all this gross negativity affects the people being described? What will my son feel when he's old enough to understand the depth of hate that exists towards people like him? Oh this is something I fear.

Sarah expressed carefully and with compassion, her feelings on the New York Times blog post. Her letter was published. It's wonderful.
But I feel like giving up when I read the comments on what she had to say. Over and over again people are disparaging autistic people in the harshest terms, accusing them of lacking empathy because they express hurt when someone writes about how they destroy normal people's lives.

I still feel shock at the hate filled garbage thrown at Sarah for daring to write. She is damned as not autistic enough to comment, as mentally ill, as complaining over nothing. It's a box ticking exercise in seeing how privileged groups diminish the voices of marginalised people.

Edited to add, Bev has a typically marvelous post up on all this and Sarah has responded to the commenters. I have yet to read it, but I look forward to her annihilation of their ill formed arguments.

Action for Children ad demonising autistic children cleared by ASA

In January, a major UK children's charity, Action for Children, released a television advertisement ostensibly about the help they had offered an autistic boy. It gave however, a shockingly inaccurate, damaging and offensive portrayal of autism and I and several others (listed here) wrote about the ad and contacted the charity with our concerns. Action for Children responded with a form letter apologising for upsetting us, as if that made it all OK, but ignoring all our valid explanations of why the ad was wrong. I created a Facebook group as a way of mobilising support and attention on the issue quickly and in a few weeks, over 2600 people had joined. The ad was supposed to have run for 3 weeks but was pulled after only 2.

In January, I complained to the Advertising Standards Agency (ASA) about the ad and on June 3rd finally received a letter with their adjudication. Unfortunately, they decided that the ad did not breach their codes. I was instructed not to publicise this decision until today when the ruling was made available on their web site.

I appreciate the time and effort the ASA has spent on this but I am very disappointed with their decision and also with the text of the ruling.

Action for Children responded to the ASA by saying that they "believed they had a responsibility to tell their stories through their [young people's] own eyes, not through the eyes of parents, carers or adults" and that "their organisation was committed to raising the issue that support was available through their advertising and campaigning, despite that being uncomfortable for some."

For the first time ever, I read that, " "Dan" (not his real name) was now an adult who was therefore able to give informed consent."
(my emphasis.)

The advertising company also responded:

"Clearcast said that, at pre-production stage, they had been informed that the stories told in the ads would be real case studies using children's own words. They considered the ads were extremely sensitively made and that the animation of the "monster" symbolised, in a child-like drawing, how a child felt when he felt out of control. They believed "Dan's" story was an uplifting one about how a boy who felt unable to deal with his autism could find help and support from Action for Children."

(my emphasis)

Does an advertising company just stating their opinion that the monstrous ad was "extremely sensitively made" make it so? Also, I dispute all these claims that the ad represents how a child/boy feels about his autism, since we now know that "Dan" is an adult.

I wrote to the ASA in January and posted my letter on this blog today. The ASA have summarised my extensive, reasonable and evidence based objections and those of the others thus:

1. All the viewers and Autreach challenged whether the ad was offensive and distressing, particularly to autistic children and their families, because of its negative depiction of an autistic child as a monster.
2. 31 viewers challenged whether the ad was offensive and misleading because it portrayed autism as a behavioural problem that needed to be corrected or because it implied that an autistic person chose to behave in the way they did and could modify their behaviour if they wished.
3. 11 viewers challenged whether the ad was misleading because it suggested autism could be cured.
4. Six viewers and Autreach challenged whether the ad condoned bullying because "Dan" appeared to believe it was his own fault that he was bullied.

Objection 1
Action for Children responded by talking again about the individual depicted in the ad, "his feelings of anger and frustration" and how "he overcame those feelings and was "more at peace" with himself. "

They claim also to have "received supportive comments on the ad from senior government figures and members of the public."

Well how nice, but thousands of people showed their disgust with the ad by electing to join a protest group, many others signed a petition against the ad, and 61 people and one autistic organisation were sufficiently bothered to complain to the ASA. Action for Children's income from grants and fees is "mostly derived from local authorities, health trusts and central government sources" according to their annual report and financial statements 2006/07 (see page 44 of the PDF link.) It is not too surprising therefore that senior government figures speak in the charity's favour. What is surprising is the insight gained into the views of the Rt Hon Hilary Armstrong MP, latterly the Minister for the Cabinet Office and for Social Exclusion on disabled self advocates.

"She said she disagreed that the ad portrayed autism as dark or evil; that it was the effects of autism that had left "Dan" feeling angry and isolated but that, with the right kind of support, it was not nearly as bad for him; that "Dan" was not "cured" of autism but had learnt how to deal with it with sensitive help and support. She said she was aware of a section of the disability lobby that believed the behaviour of those with a disability should not be "interfered" with but she believed that view should be challenged. Even if wider society tolerated the behaviour "Dan" described, it was painful for him."

(my emphasis)
That line about the disability lobby deserves further investigation. I wonder from where Ms Armstrong derived this peculiar view, what evidence she has that it exists and what relevance this notion of hers has on the criticisms of the monster autism ad? I am disappointed that the ASA saw fit to use this in their adjudication as it implies that those of us who object to the demonisation of disability are some peculiar "lobby" that seek to leave disabled people to flounder.

Objection 2
Action for Children responded by saying

""Dan" had approved the concept and the drawings as how he had seen himself and what he had felt he needed help with. They said he felt strongly that he now had support to help him with aspects of his behaviour which previously he had not understood and which had created difficulties for him in his relationships."

In the email I received from Gary Day on Jan25 this year, he wrote something else entirely. He said then,

"Dan tells his own story in his own words, and he chose to name his condition, the drawings that you see were also drawn by Dan, the pictures depict how he saw himself before we as a charity got involved and helped Dan and his family."

Why were they claiming at first that Dan drew the pictures when it was an advertising company all along. Why are they hiding behind this individual, as if Dan saying it makes it all right no matter how damaging it might be to all the other autistic people out there?

They also quoted the principal of Dan's school saying that Dan used to have behavioural difficulties but with their support, he got over them. That's all great but I don't see the relevance to an ad that is damaging to public portrayals of autism for all the other autistic children in the UK.

We learn also and I am not surprised, that the former chief executive of another major UK charity, Mencap, "supported the ad "because it raises awareness of some very complex issues that are frequently misunderstood by the general public" and who said awareness of the lack of services available needed to be raised."

It's all about the awareness isn't it? It matters not, apparently, if that awareness causes more harm than help. An ad that makes more people "aware" of autism as a condition that makes you into an anti-social monster is supposed to be a good thing?

Objection 3
Another glut of false arguments are presented in the next bit of Action for Children's response to objection that the ad appeared to show Dan being cured (my points in red):

" They said the ad showed "Dan" shedding his anger and frustration but referred to their comment above that he was still on the autistic spectrum at the end of the ad. This is not apparent to the average viewer. They said there was a wide range of opinion on almost all aspects of autism and that some groups disagreed with showing autism as any kind of problem for those diagnosed on the autistic spectrum, or their families. A total fabrication! Action for Children said they knew, however, that people and families who experienced autism also experienced problems and that they did not feel they could shy away from difficult or sensitive issues for fear of upsetting a small minority of people if they were making a case for the good of the children and young people with whom they worked. It is not fear of upsetting a minority that we have criticised, it is your misrepresentation of and damage to the lives of autistic people.

Objection 4
Their response to the bullying queries:

Action for Children said the ad quoted "Dan" as saying "I used to lash out if somebody pushed my buttons or I wasn't able to do something." They said that contextualised his feelings of anger and frustration in that they were not just in response to other people - he was also generally frustrated with things around him. No one objects to Dan's feelings nor that he was helped to find ways to deal with them. They said the crucial aspect of Action for Children's support was that it allowed "Dan" to be "more at peace with himself" and less likely to respond with violence to things that perhaps did not warrant that response. Action for Children said they did not condone bullying or cruelty but that, nevertheless, children and young people found bullying was a common and profoundly damaging experience. I contend that the ad itself would cause more bullying of autistic young people as it portrays them so badly.

It is worth noting that the opinions of the autism professionals who spoke out about the ad or against damaging portrayals of autism, are missing from the ASA's adjudication report.

The ASA's Assessment
Objection 1. Not upheld

The ASA say:

We considered, however, that they had taken pains to represent autism and the issues it raised in a way which, in their experience, was accurate and truthful, and that the message of the ad was positive. We concluded that the ad was unlikely to result in widespread offence or to have the effect of undermining the dignity of autistic children and their families through its depiction of autism.

I feel that I demonstrated in my letter the ways in which the ad was inaccurate, untruthful and that it's message was damaging. The ad did result in widespread offense and did undermine the dignity of autistic people. That the ASA don't agree is disappointing, but it doesn't change the facts.


Objection 2. Not upheld

We noted the concerns expressed by the viewers and the points made in defence of the ad by Action for Children and Clearcast. We considered that, while views on how best to address the issues autism raised might differ, the story told in the ad centred on one person's - "Dan's" - experience; on the difficulties he considered he had experienced as a result of his behaviour and his reactions to his surroundings; his wish to address them and the difficulties he had experienced in doing so until he received help and support. We did not consider the ad suggested an autistic person chose to behave in the way they did or that they could simply choose to modify their behaviour if they wished. We considered the ad did, however, tell the story of how "Dan" had wanted to deal with his situation and how, with the right help and support, he was able to do so. We concluded that the ad was unlikely to cause offence or to mislead viewers by portraying autism as a behavioural problem or because it implied that an autistic person chose to behave in the way they did and could modify their behaviour if they wished.

I disagree with this assessment. As I showed in my letter to them, the NAS have shown that 17% of people already think that autism is just bad behaviour. I expect that number would increase if those being surveyed were shown this ad first.

Objection 3. Not upheld

We considered that the story told in the ad centred on one person - "Dan's" - experience; on the difficulties he considered he had experienced as a result of his behaviour and his reactions to his surroundings; his wish to address them and the difficulties he had experienced in doing so until he received help and support. We considered that, just because issues or a situation could be addressed and supported, it did not necessarily follow that they were completely resolved or, in this case, "cured." We considered that views on how best to address the issues autism raised might differ and that, while the ad told of the experiences of how one person had been helped to address the issues they considered the condition raised for them, it did not suggest that the condition was one that could be cured or that "Dan" had been cured. We concluded that the ad was unlikely to mislead viewers by suggesting the condition could be cured.

Making this all about a man called "Dan" and claiming that as it's just one man's opinion, and then presenting this as if it were actually the views of a child, does not exonerate the charity and the professional advertising company from culpability. This ad was expensive to produce and run and portrayed autism in the way Action for Children thought would best gain them publicity and support as the saviours of even tragic cases like Dan's.


Objection 4. Not upheld

We noted the concerns expressed by the viewers and the points made in defence of the ad by Action for Children and Clearcast. We noted that the ad referred to "Dan" being insulted and reacting to that by being physically violent to the person concerned. We considered that, while "Dan" regretted reacting with physical violence and wanted to be able to deal with the situation more appropriately, the ad did not suggest that "Dan" considered it was his own fault he was bullied or that bullying behaviour was acceptable. We concluded that the ad was unlikely to be understood as condoning bullying.

I consider that the ad implies that autistic children are more likely to act aggressively than typically developing children. This is another misrepresentation as aggressive behaviour is not one of the diagnostic criteria for autism or Asperger's syndrome.

Professor Tony Attwood, criticised this ad with specific reference to the bully message:

"“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.
Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.
He refers to reacting when people insult him. Those that insulted him need the treatment.”

Professor Attwood was not quoted on the report.

So Action for Children can celebrate that they have won. I had hoped that the advertising guidelines might provide some protection for autistic people from the disturbing way Action for Children chose to portray them. But that has not happened. Action for Children must be proud of their victory, their right to show autistic children as monsters thrashing around terrifying the population has been upheld. Well done to them.

My Letter to the ASA about Action for Children monster ad

Now that the ASA have ruled that the monster ad did not breach their code of practise, I will publish in full the letter I submitted about the ad. I will shortly publish my view on the ruling and Action for Children's response.

-------------------------------------------------------------------------------------------------

The Complaints Reception Team
Advertising Standards Authority
Mid City Place
71 High Holborn
London
WC1V 6QT

31 January 2009

Dear Sir or Madam,

While I commend the work Action for Children does as a charity, and have no doubt of their good intentions, I object to this campaign and contend that it breaches the CAP Code for TV advertising, section 11.3.4, relating to ethical responsibility, in the following ways.

11.3.4(b) The problem AFC seeks aid for is exaggerated by the use of highly emotive imagery. A cartoon monster is shown jumping around in an urban landscape, attacking some accelerated film footage of real people. As this image plays a boy's voice-over says, "I used to lash out if something pushed my buttons or I wasn’t able to do something. Things that wound me up were if they’d insulted me I would physically hurt that young person." Then we see that the monster has a sad looking normal boy trapped inside, looking out through its mouth. Straight after that image is shown, the boy says the words "My parents sought out help with my autism because it was becoming a pain in the bum."

[17/06/09 edit; It turns out that he actually said, it was "a pain for them", but it was very unclear and no one from AfC saw fit to correct the transcripts any of us had made on our blogs even though they spent long enough reading them from their offices in Doncaster.]

This exaggerates the problems autism causes and implies that autism is making the boy a monster. It connects autism with aggressive, anti-social, monster-like behaviour.

My 10 year old daughter said on viewing the ad, "It's showing the boy stuck inside a monster and that's autism and then he goes away to a school and he comes out of the monster and he's not autistic any more. But that's not right, Duncan (her autistic little brother) isn't a monster. He's a human being."

11.3.4(c) The AFC ad does not respect the dignity of vulnerable children and young people who are the very people AFC are supposed to help. On the morning of Sunday 25th January 2009 I created social networking group on www.facebook.com in order to campaign against this advertisement. Between the time of its opening and the time I am writing this letter (the evening of Saturday 31st January 2009), 940 individuals have read my reasons for starting the group, and have decided to support my protest by signing up to the group. The group can be viewed here:
http://www.facebook.com/groups.php?ref=sb#/group.php?gid=47154931157

Professor Roy Grinker, author of "Unstrange minds: Remapping the World of Autism" has joined this group. There is another renowned autism author and at least one distinguished FRS scientist as well as many autistic people, and others who have autistic family members and friends. Others joined because they care about the human rights and dignity of all people including those with autism.

AFC replied to the dozens of complaints they have received about the advertisement by sending everyone form letters which request that we take our concerns to the ASA. In some of their responses, AFC defend the ad by saying that it uses words and drawings Dan produced to describe himself. In other responses they say that Dan "approved" the ads.

But an advertising company created this ad, employing both marketing professionals and art direction staff. This ad is not, no matter how AFC have tried to spin it, the self-published, direct telling of one child's experiences. This ad shows how AFC choose to portray autism by using Dan's story, with his poor self image and worries. They have used the troubles and fears of a vulnerable child to generate pity and fear, to make them appear to be heroic in saving even tragic cases like Dan. They cannot claim that they were merely giving him a voice.

The harm to other vulnerable young people just like Dan, is too great to be ignored. There is a great deal of misinformation in the public sphere about autism. The National Autistic Society carried out studies recently about public attitudes to and understanding of autism:

http://www.think-differently.org.uk/Awareness/Contacts%20and%20Resources/%7E/media/ThinkDifferently/CampaignPack/NAS_Aware_report_Wales_FA.ashx

They uncovered a great deal of misinformation. For example, 17% of those surveyed mistakenly thought that some children with autism don’t have a disability, they’re just badly behaved. Advertisements like this one could well cause that number to increase as it implies that Dan merely had to learn to control his behaviour. The voice-over reinforces this view, "Thanks to the carers I was able to correct a lot of errors in my behaviour and become a better person." There is no mention of the effects of outside influences on the child's behaviour, or the difficulty for any child approaching the teen years in dealing with bullies ("if something pushed my buttons", "if they’d insulted me") and the pressures of growing up. There is no mention of the extra difficulties in dealing with these pressures for a child with a disability that affects communication skills, sensory precessing, and who can find certain social situations more difficult than his non-autistic peers.

Aggressive behaviour is not one of the diagnostic criteria for autism or Asperger's syndrome. The ad implies that autistic children are more likely to act aggressively than typically developing children. This is another misrepresentation.

Professor Tony Attwood, internationally respected researcher and expert on Asperger's syndrome, recently criticised this ad;

"“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.
Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.
He refers to reacting when people insult him. Those that insulted him need the treatment.”

The ad implied that autism was a monster trapping Dan, and after time and help from AFC, he was able to (according to the ad's imagery) climb out of this monster, into the calm green field and crush the monster with his foot when it threatened to devour him once more. It implies that Dan is no longer autistic and is much better off that way.

There has long been a view among some people, of autism as a shell which traps a "real", non-autistic children inside. It was first used by Bruno Bettleheim who described the autistic child as an "Empty Fortress" and was of the (now utterly discredited) opinion that "refrigerator mothers" cause their children to "act" autistic as a defence mechanism. This imagery is still used by those who emphasise a model of autism intervention of cure and prevention instead of helping those living with the condition to thrive. Some unscrupulous people make money by selling false therapies to desperate parents, who are even now, led to believe that they can release their precious child from the clutches of the "autism-monster". Parents of recently diagnosed children may see this advertisement and worry unnecessarily about their children and may be more willing to fall for the false promises of those selling dangerous and expensive, fake autism "treatments." The National Autistic Society study showed that 56% of their respondents thought that autism was curable. This ad helps enforce this discredited theory of autism.

11.3.4(d) That 2000 (and rising) people have joined a Facebook group protesting the ad, and that so many have left messages expressing their disappointment, worry and hurt at the ads on AFC's YouTube page, on personal blogs, parent and disability forums and that so many have already written to AFC to complain, shows that this ad has aroused strong feelings and caused great distress.

The representation of autism by the media is a very sensitive area, especially coming so soon after a great deal of public discourse about the possibility of prenatal screening for autism.

The AFC campaign isn't merely offensive. It also misrepresents autism, portraying it as an external monster to be defeated. It will damage the self esteem of young autistic people in particular to see their autism, an integral part of themselves, depicted as monster trapping them, as something to be defeated. They will see themselves depicted as frightening beings whom others fear. There are many testimonials from parents saying that their autistic children were disturbed by the ad. There are many descriptions of the hurt the ad has caused to older autistic people too. One woman tells of her 20 year old daughter who is seeking work and fears that the ad may make her less employable to employers thinking she could be aggressive and lack control.

This ad contributes to the mass of misinformation and prejudiced, negative rhetoric about autism in the media and wider society. One autistic adult wrote to me about the effect this has, that such rhetoric will, "contribute to the widespread social construction of prejudice, and how that prejudice, in the clueless hands of the general public, endlessly pelts us and pounds on us, every minute of every day, day after day, week after week, month after month, year after spirit-crushing year... "

AFC seem to have opted to jump on the autism bandwagon, thinking that autism always gets the media interest they seek, given its prominence in captivating articles like those on the MMR and the recent high profile debate on prenatal screening. AFC have used the problems of autistic children to raise their profile, but have misrepresented the condition. This is utterly unethical. Every airing of the ad furthers the potential for damage.

To end, I would like to use the words of AFC themselves. In a report produced by the charity, they say (regarding the current government's policies):
"With regard to younger children, the emphasis has been on children’s vulnerability and support for parents. With respect to older children, there has been a tendency to demonise them and to fail to see young
people’s viewpoints, which is at odds with ministers’ avowed wishes in other contexts to listen to and be seen with young people."
http://www.actionforchildren.org.uk/uploads/media/77/3333.pdf

Many young people have written to AFC, and have written on my Facebook group and on blogs and forums about how they fear this makes them appear to the public. Others have expressed their dismay and fears about this ad to their parents who have signed on their behalf. Other allies have signed because they object to the unethical depiction of autism and their concerns for the ill effects this ad is having on the people it seeks to help.

AFC know that to demonise children is wrong, that to fail to see their viewpoints is wrong.

I would like to see AFC withdraw this advertisement, apologise to the autistic community and commit to seek the input of autistic-run advocacy organizations, and well informed mainstream autism organisations like the National Autistic Society in future advertising and fundraising efforts.

The Catholic Church in Ireland

I wrote about the release of the recent report into the decades long, systematic, extreme and abhorrent violence, abuse and neglect. I have read more of the report and news and opinion articles on blogs and in newspapers. I have witnessed the pathetic response of the Irish Catholic church spokespeople, and even worse, the religious orders that perpetrated these crimes and who have no idea what true sorrow and repentance means.

Then via John's blog I heard this man. I witnessed his anguish and his righteous anger. I do not know how those in power in government and church can allow this man, Michael O'Brien, and all the others like him who were abused in those places, to continue to suffer.

This is outrageous. It is our national shame. We can't allow this to just hold the headlines for a few weeks and then move on to something else. There has to be a fundamental change in Irish society.

You will not be able to watch this without crying. There might be a subtitled version available soon which I can embed instead. However, Will Knott has kindly provided a transcript of the video which is copied below.

(Edit, the video is now subtitled.)


Transcript:

Mr. Chairman, I’m surprised at the minister there now.

First of all Mr Minister (directed at Minister Noel Dempsey) you made a bags of it in the beginning by changing the judges. You made a complete bags of it at that time, because I went to the La Foy commission and ye had seven barristers there, questioning me and telling that I was telling lies, when I told them that I got raped of a Saturday, got a merciful beating after it, and then stuffed…

… he came along the following morning and put holy communion in my mouth.

You don’t know what happened there. You haven’t the foggiest, you’re talking through your hat there. And you’re talking to a Fianna Fáil man, a former councilor and former mayor you’re talking to, that worked tooth and nail or you, for the party that you’re talking about now. Ye didn’t do it right, ye got it wrong.

Admit it.

And apologize for doing that. Because you don’t know what I feel inside me. You don’t know the hurt I am.

You said it was non-adversarial.

My God.

Seven barristers.

Throwing questions at us.

Non-stop.

I tri.. attempted to commit suicide, there’s the woman who saved me from committing suicide, on me way down from Dublin, after spending five days at the commission. Five days I spent at the commission. They brought a man over from Rome, ninety odd years of age, to tell me I was telling lies.

That I wasn’t beaten for an hour, non-stop by two of them.

By two of them.

Non-stop from head to toe without a shred of cloth on my body.

My God minister.

And could I speak to you (comment directed to Leo Varadkar, Fianna Gael), and ask your leader, would you stop making a political football of this.

You hurt this when you do that.

You tear the shreds from inside our body.

For God’s sake, try and give us some peace.

Try to give us some peace and not to continue hurting us.

That woman will tell you how many times I jump out of the bed at night with the sweat pumping out of me. Because I see these fellas at the end of the bed with their fingers doing that (gestures) to me. And pulling me in to the room, to rape me, to bugger me and bate the shite out of me. That’s the way it is.

And you know what?

You know what, sometimes I listen to the leader of Fianna Fáil. I even listened to the apology. T’was mealy mouthed, but at least t’was an apology.

At least t’was an apology.

The Rosminians said in the report, they said they were easy on us. The first day I went to them. The first day to Rosminians in my home which is Ferryhouse in Clonmel, ’cause its the only home I know. He said “you’re in it for the money”.

We didn’t want money.

We didn’t want money. We wanted the pr… someone to stand up and say “yes, these fellas were buggered, these people were ra…”

Little girls. My daughter, oh sorry, my sister. A month old when she was put in to an institution. Eight of us from the one family, dragged by the ISPCC cruelty man. Put in to two cars, brought to the court in Clonmel. Left standing there without food or anything, and the fella in the long black frock and the white collar came along and he put us in to a van.

Not a van, a scut truck, I don’t know what you call it now. And landed us below with two hundred other boys. Two night later I was raped.

How can anyone…

You’re talking about constitution. These people would gladly say “yes” to a constitution to freeze the funds of the religious orders.

This state, this country of ours, would say “yes” to that constitution if you have to change it.

Don’t say you can’t change it.

You’re the government of this state. You run this state. So for God’s sake stop mealy mouthing. ‘Cause I’m sick of it.

I’m sick of it.

You’re turning me away from voting Fianna Fáil which I have done from the first day that I could vote. Because. And you know me. You know me Mister Minister. You’ve met me on a number of occasions. So you know what I’m like.

Entrenched evil-doing in Ireland

We all knew what to expect. It is still shocking though when you read the report, or, as much of it as you can stomach. The people of the church carried it out, they covered it up. Generations of children had their lives ruined, and in some cases, taken. The state conspired with the church leaders to hush the suffering children and to ensure that their pain wasn't made known beyond the cold stone walls of the orphanages, reformatories, "care" homes for disabled children and industrial schools. What was done to these children was brutal, far worse than the accepted level of child abuse tolerated at almost all schools in the country, the run of the mill beatings and canings by teachers which were legal and known as corporal punishment. These were an expected part of education in those not far gone days. What happened to these children, taken from their families or who had no families, was far worse. They were abused in every way. They were beaten, bullied, raped, neglected.

Reading Nick's blog today I learned of the chapter of this massive document dedicated to the abuses perpetrated in Special Needs Schools and residential services. A table is used to show the 11 combination of types of abuse the witnesses endured. It is a long list of heart breaking tales, examples of hurts, lives destroyed, families torn apart. To pick a random example:

"I was locked in the washroom overnight. ......( named religious staff member)... would walk out and close the door, you’d have your ...night clothes... on and you could stand at your basin and do what you liked but you had to stay there, no blankets, mattress, sleep on the bare floor. We used to get together in a corner and try to keep each other warm, it was scary, you’d hope that nothing would happen, you could also be there on your own. ... You could be there for more than a few nights in a row, freezing cold."

For these disabled children, the report describes how they;

"generally reported having great difficulty in finding ways of disclosing their abuse to anyone. In all instances the witnesses’ particular disability was described as a barrier to communication and disclosure, both at the time and subsequently. A number stated that this difficulty was particularly highlighted when addressing such a sensitive topic as sexual abuse."

The report also details ways in which the appalling start these people had in life has affected them as they've grown up. I do not excuse or forgive this brutalisation of the vulnerable. I cannot. I want to see a revolution. The people who did this and the others who colluded in the cover up cannot be allowed to continue to wield the power and influence over so much of Irish life any longer. We ,must stay away from their churches and ceremonies. We must freeze them out. We must take back control of our schools and hospitals, care homes and residential facilities. They cannot be allowed to get away with this. They have bullied and impeded our lives for long enough. The children who suffered in the Irish gulags are owed a duty by all citizens to stand up against the vile creatures who harmed them. It is no longer good enough to point to all the good some of the clergy and others in the religious orders have done and to say that many of them are not abusers, that the majority are decent men and women of faith. That is true, at least I think so, but then I haven't read the full report. But the leaders are up to their necks in their culpability for allowing this to happen and as such have tarnished the whole show.

There must be trials and prison sentences. The guilty must be named and sent down for their crimes. The incoming leader of the Catholic church in England and Wales was wrong when he described the people who have admitted some portion of their crimes (and only when absolutely forced to do so as their cloak of concealment was finally dragged away) as "courageous".

I remember being a child and how powerless I was, and I had a very safe and happy childhood. I can’t imagine living in fear every day like generations of my country people have. I look at my own children, exasperating, joyful, vulnerable, hopeful and the idea that little people like them can be harmed for the perverse pleasure and convenience of religious orders fills me with fear and anger and unfortunately, hate. I am ashamed of my nationality and of my abandoned religion.

Other posts:
Bock
Nick
Paddy Doyle

A bully strikes

Duncan is growing up. He has changed again since his eighth birthday. I still have to be very careful in many circumstances, and he still can, um, surprise me by, for example, finding a pot of poster paint and decorating his trains, getting more than a little splashed around the bathroom in the process. But, I tell myself, it is so much better than when he would never have considered, as he now does, trying to avoid messing up the carpet. And there was a time when it was a substance more unpleasant than poster paint that I sometimes had to clean from various surfaces and objects.

But he is desperate to be allowed to ride his bike like the other children, up and down our street. I used to walk alongside him as he rode, fearing an impulsive foray into someone's house or worse, onto the road, but that was when he was on a smaller, slower wagon. More recently I have been able to stand outside our gate and watch him as he goes, shouting for him to turn and come back when he goes far enough. I wonder what the neighbours think sometimes. This used to be a quiet street until my children started to ride around and seemingly unearthed a host of other kids to bomb up and down the street with, pretending to be a police-dog-rescue-squad, or whatever. And then there's me guldering (as we'd have said out west where I grew up) orders at my son.

One day a few weeks back, I was talking with a neighbour as Duncan rode, and he went out of sight for a minute. Our road sweeps around in a crescent, making it fairly safe as only people with dealings in these houses have cause to drive here. I went to fetch him but couldn't see him or his bike. I called out and shortly a teenager came out from one of the houses asking if I was looking for a little boy, and one matching the description I gave turned out to have popped into their house to use the toilet. Oops! I apologised and for once gave the autism explanation, which she understood since she said, her best friend has autistic brother.

Yesterday some of our neighbours came round for a very informal dinner. The children were in and out and all about. Duncan got out with Lady and came riding up the street proudly bearing a creme egg. Where on earth had he got that? Thankfully he was able to explain it was from one of their friends' houses. The dad told me later, when I was once again apologising, that Duncan had quietly come in, opened the fridge, helped himself, politely said "thank you" then left. He did this twice too. Ah well, at the time I was feeding their kids some hot-dogs!

Earlier this week Thomas convinced me to take them to an indoor soft-play place as these same friends were going. It's a nice place, with a decent cafe and comfy chairs to entice the parents. I lost sight of Duncan almost straight away and climbed to an upper level to look for him. I spotted him streaking out of the cafe place, with a pink doughnut in his hand. I ran down and caught up with him. "Sorry Mummy! Mummy go pay for it," he said, showing me he knew that what he'd done was wrong. I paid for the already eaten pastry, and I don't think the busy staff had even noticed the little Artful Dodger's pilfering.

Anyway, my three children enjoyed their play, especially so as they had a few other friends there too. Just when I'd decided to give them ten more minutes, they all came to me supporting a distraught Duncan, bearing a red, sore looking eye and a face full of tears and snot. A boy had punched him right in the eye! Thankfully Duncan was with his siblings at the time so I was assured that he was blameless, and also that the transgressor had been noted and sternly spoken to. I cleaned him up and followed Lady to meet the thug, who was no more than five years old. I told him that he must not punch people, that it hurts and is very rude. The boy said that Duncan was being rude to him, which Lady denied, and I reiterated that it doesn't matter, he could go to an adult if he thought someone was doing wrong, but he must not hit them and hurt them.

I told one of the staff about it all then we went home. Poor Duncan's eye was red for a while. It's shocking to think that such a small boy would decide to just punch another child like that. I wondered Duncan ignored him, or appeared odd in the way he wandered around talking to himself, making this boy feel it was OK to punch the weirdo. Gordon was worried when I told him, saying that such ill treatment is just beginning for Duncan. I refuse to accept that. I will work on Duncan as best I can to help him learn strategies to stand up for himself and stay safe, but I will also do what I can to change the prevailing attitude that difference should be feared and punished.

When I was talking to Duncan about it all later, he reminisced about the doughnuts and the "turntable" (roundabout thing) and then about the "naughty boy punch Duncan." He wasn't too upset, because we all helped him know that the other child did wrong, that hitting and hurting is bad, and we don't want anyone to hurt our boy.