27 Aug 2008

Not Good Stuff

In contrast to all the nice things mentioned in the previous post, here are some things that have been pissing me off recently:

  1. Reading opinion on the Tropic Thunder thing. It's clear that many of the people who have some understanding of the evils of racism, sexism and homophobia are much less concerned with the problems of disablism.
  2. The stories from the USA about increasing outbreaks of measles and the pathetic responses of those who oppose vaccination.
  3. The terrible comments seen now and then on pro-science sites attempting to understand the irrational attitude of those parents who blame vaccination for their children's autism, but which end up being disgustingly disablist instead, comments like this, comparing the dangers of infectious diseases to autism:
"To her, it probably is. Most victims of childhood diseases like measles and chickenpox either die or recover completely. Those that die ... well, their pain is over, and (in most cases) those left behind will eventually adjust to their loss. Even the diseases that can cripple or disfigure don't affect the person's ability to lead a more-or-less normal life. Hell, a polio victim once became President of the United States!

But the more severe forms of autism (or any other brain-damage condition) destroy the victim's life without - quite - taking it away completely. It's said that the worst experience a parent can endure is having to bury their child. I'm not so sure of that. It's entirely possible that having a mentally-disabled child is worse, because it never ends and there's never a chance to adjust to it or recover from it. The wound is reopened every single time the parent looks at what is and thinks about what might have been. I'll tell such people that they're mistaken, but I try to never belittle the anguish they must feel."
I had to write something about that:
"Dawn2 (an anti-vaccine stupidity promoter) made a comment that makes no sense and makes her sound rather unhinged, but wolfwalker's comment might be the most callous, disablist and bigoted one I've ever read here.

Do you really think that parents dealing with the death of their child, suffer less than those dealing with a disabled child?! And who gets to define what constitutes a "more or less normal life"? My autistic son may not have the same ambitions or abilities as his non-disabled peers and siblings, but I can guarantee you, that I am happy to have him alive and will support him as well as I can. He would not be better dead than disabled. Oh dear, I'm shocked, you actually wrote that having a son like mine might be worse than having a dead child! Think again wolfwalker. Parents who think like that have sometimes gone on to kill their children.

People who think like that are just plain wrong, always."
S/he (wolfwalker) responded to my comment with;
"Sharon, I intended no offense and I apologize if any was taken. I certainly don't wish death on any innocent, whether they're autistic or not. Being single and childless (both by choice), I literally do not know which would be worse, having a severely autistic child or losing a child entirely. All I know for sure is, I never want to experience either one and I have a great deal of respect for those who have been through either experience and survived it with their sanity intact.

Please note that in the comment that got you so angry, I said a severely autistic child. I read your linked post, and I will tell you flatly that your son's condition is not what I had in mind when I wrote that."
Wow, talk about missing the point. Aside from the fact that Duncan's diagnosis is "severe" autism, there is no way of being alive and autistic that is less preferable to being dead. S/he claims to have respect for people who have experienced such things but fails to understand that society's horrible attitudes about the value of our children's lives add greatly to our stress load.

Good stuff

  1. Duncan's drawings and books.
  2. Squishy little boy cuddles in bed each morning.
  3. Lady growing up, taking more of an interest in the world, in music, in wanting to learn and develop and having fun with her mates.
  4. Thomas changing so much over the summer, leaving more of his early childhood interests behind and spending more time than ever with other little boys.
  5. Thomas and Duncan playing silly, fun games together in the mornings or just before bed, games like "ghost" and "smelly feet" that involve lots of laughing and tickling and chasing.
  6. Duncan playing outside while an adult hovers by the front gate to check on him now and then, knowing that his siblings are also keeping an eye on him.
  7. The neighbourhood children all getting to know and accept Duncan as he is, and answering their reasonable questions about why he does certain things or can't do other things. Seeing them greet him and sometimes play with him, though he usually prefers to just play his own game somewhere near them.
  8. Pippi, our cute pup, who is starting to be much more responsive to our commands and who seems to have a special bond with the person who was least keen to get a dog in the first place.
  9. Duncan's skill with his new PC game, Railway Simulator. We've figured out how to upload Thomas trains to the programme and he's having the best time recreating the stories in detail.
  10. Breakfast in bed every other morning.
  11. The Olympics, more fun than I'd expected. I loved the diving and the canoeing, and obviously, the athletics. The Jamaican men and women were astonishing, especially this guy. We all celebrated and cheered-on their successful races.
  12. Getting our back garden sorted. The gardener who oversaw the building of new walls and mended fences came by for his cheque yesterday and we chatted about family and living here and he mentioned that his youngest child was recently diagnosed as autistic. He spoke lovingly about her chattiness and extraordinary memory and I told him about Duncan. It was nice.
autism autistic Ireland

22 Aug 2008

Mini-holiday

Gordon had a few weeks off work and we intended to just spend time together at home with perhaps a few outings.

The children were looked after by their amazing grandparents and Gordon and I spent a night at a Donegal hotel called Harvey's Point. What a place. If you are ever in the area, stay there, or at least dine there. It was perfect in every way.

Once back home, we realised that it's just nice for everyone if we can leave home even for a short time and have a proper break from the routine chores and demands.

But what about Pippi? I didn't want to leave her (I mean, look at that wee face, how could you leave that?) so she had to come too. I looked online and found a house to rent where dogs are welcome. We packed up and went the next day. The house was beautiful, if rather hard to find up in the hills of Inishowen and overlooking Lough Foyle. Thankfully the owner met us at a convenient point and showed the way.


We settled in and made ourselves at home. The children and pup explored the new place. Duncan, dressed as usual these days in his self-designed Clayton-the-hunter gear, enjoyed the Border Collie who came to play in the garden, tossing a ball and his toy gun for the dog to fetch, as well as on occasion, pretending it was a gorilla and shooting it. (Clayton is the bad man in Disney's Tarzan and indulges in such vices.)


We headed to a beautiful beach for a few hours. Thomas did not want to be there, as evidenced by that face. But the rest of us enjoyed it. Duncan filled his welly boots (part of the Clayton look) with a sand and water mixture and claimed to be making toffee. Pippi, who is still kept on-lead when out, got very excited at all the other dogs and barked lustfully. One of these well behaved dogs and his owner appeared to be rather taken aback by our ruffian pup whom we've started to call Asbo pup. Ah well, we're well used to people staring at us as one of our charges makes more noise than is deemed appropriate.

15 Aug 2008

Ten years ago today.

Lady was 5 days old. One of Gordon's best friends and his mother visited our home to meet the new baby. The sun was shining and the world seemed to be a kind, good place.

Then there was a call from home, a small town in county Tyrone not far from Omagh. For the first time, I heard about the bomb. I couldn't understand; why would there be a bomb going off in the middle of Omagh on an ordinary, sunny Saturday? The Irish people in the north and south had recently voted in huge numbers to accept a peace deal and in Northern Ireland, voters had elected First and Deputy Ministers for the devolved assembly. We had made it clear to the thugs with guns and bombs that we wanted an end to their rule of terror and that we were willing to accept compromises and make deals with our neighbours for the sake of living in peace. (The above photo shows the town minutes before the bomb, hidden in the red car, exploded. Several of the children on the left were killed.)

But the dissident republican murderers didn't care about what the people clearly wanted. They decided to plant a bomb in a town full of shoppers, children out getting school uniforms, day trippers and workers. They deliberately gave false information in the phone warning, so people were moved towards danger not away from it. In the end 29 people including 9 children died. In addition 2 unborn children died when their mother was killed.

A few of my family members were caught up in the carnage. One of them, only nine years old, was very badly injured and though he has thankfully recovered, he had to endure multiple major operations.

So that horrible day passed and the extent of the death and suffering was made known. Today, I want to pause to remember those who lost their lives, those who were injured and disabled, and the families left to grieve. I remember that no-one has ever been held accountable for the crime, and hope that those involved suffer for it, in some way, some day.

14 Aug 2008

That film and that word

So there's this film that's just been released in the US. Ben Stiller has co-written, directed and stars in the film. It makes frequent use of the words retard and retarded. It features the stories of a white actor who is made up to play a black man and a non-disabled actor doing the whole bowl haircut, bad teeth and crap dialogue in the film-in-a-film, with the tag-line, "Once upon a time there was a retard."

The white actor who dons black-face is admonished by black characters in the film, but no such denouncement occurs for the other character. Instead he is told that the reason he failed to gain Oscar success, unlike previous actors who portrayed disabled characters, is that he went too far with the character. The line used at this point has already gained notoriety and T-shirt slogan status.

In flicking about I found this interview on Entertainment Weekly with the actors:

The challenge with that character was to find the right line. You want to make fun of this pompous actor, but if you play it wrong, it verges on being minstrel-like. Your costar Brandon T. Jackson told me there was a scene in the script where Osiris uses the N-word and that he said it went over the line.

ROBERT DOWNEY JR.: Brandon might have saved the movie that day.

BEN STILLER:
For sure. We were rehearsing in Hawaii and we got to that scene and I said to him, ''What do you think of this?'' Brandon said, ''This feels wrong.'' It was definitely a constant process of feeling it out.
So the black actor advised them on what was going "over the line" on what "feels wrong" but they never thought to consult with disabled people about what might cross lines or feel wrong in their use of "retard" or the many examples of insensitive dialogue and portrayals detailed here.

I'm glad disability activists are speaking out about this. I'm not going to join them in asking people to boycott the film. I won't go see it myself. Until I knew about all this stuff, I had intended to go as the trailer I saw looked bloody funny and I really like some of the films Stiller has been involved in. Other people can decide for themselves. I know there is an important distinction between trying to ban something and deciding not to go yourself. But there is a bit of me that feels it's all a bit "down with this sort of thing." The film has already been made unfortunately, and we can't decide what other people choose to watch, read or say. But we can inform them on what we think about the controversy and why.

A blog I read had a post up arguing against the "PC vampires" and their weak euphemisms and making a case for people to use language as and how they see fit. I commented there, and I'll copy from that here 'cause I'm too lazy to write the same stuff down twice.

I don't think the word retard should be banned; how do you ban a word anyway? But like some people who have learning disabilities or have family members who are learning disabled, I don’t like the word and want to educate people as to the reasons why.



Retard is an ugly, hard and hurtful word. People can keep on saying it if they want, knowing that choosing a word that refers to people like Brent Martin (beaten to death because a few lads thought it was fun to pick on the ‘tard) or my son or the thousands of people like them, and using that word as a short-hand for stupid, moronic, pathetic, just devalues these people and hurts them.

Some wise people have explained the history of ugly words and how they cause harm. Others can clamour for their freedom to label stupidity after a term used to describe my son’s developmental delay. They can fight to call gay people faggots. It’s different when you know someone well enough and can make an in-joke. But not in a million years will I use a term associated with hate speech. Do you think when bigots attack, they accompany each kick with the PC words, or might they choose the strongest, most hateful language possible?

I don’t know why people are so desperate to be able to keep saying retard as an insult. I think everyone can say and write what they want. I can choose who I talk to and what I read. Just be aware of the reasons why some of us wish that word could just be quietly dropped out of circulation.

Please, just read this one post, then decide if moderating language can be the right thing to do.

And how do you make the distinction between hate speech and offensive speech? Yes sure retarded is a valid word. If I put sand in my car’s tank it would retard its performance. My son’s development is retarded compared to his typically developing peers. (I’m not going to refer to them as “normal” as that just makes him by default, abnormal.) Those are perfectly fine uses of the word.

But using that same word to mean disabled people like Duncan, and then using it as synonymous with stupid, pathetic, crap is not nice. If you drop your glass, or bash into a wall and your mates call you a retard or say “jeez you’re so retarded” then a judgement is made on learning disabled people as the epitome of thick.

Oh and just to round off, here’s a much funnier and less wanky way of making the point Stiller claims he wanted to make with his movie. It's the episode of Extras with Kate Winslet. Watch out at 4.40 in particular and notice the reaction of Gervais' character. Excellent stuff.

6 Aug 2008

Odd stories

Last autumn, Duncan had a Kinder Surprise egg, and the toy inside was a blue alien, at the time known as "Japanese boy."

Unfortunately, he lost the toy and we bought many, many more eggs always hoping to find another. We never found the blue one, only a couple of his siblings/colleagues. But a few weeks ago, Duncan showed me an Ebay listing for the much sought after blue alien toy. Can you imagine that there are people out there selling the junk toys found inside Kinder eggs? But then, mugs like me come along and buy them. Yes, I forked out good money for this thing, and was glad I did as it made my boy so very happy.

Since then, it's been renamed. The blue alien is now known as Oliver Companies, and his mates are Roger and Siver. They get up to all sorts of japes, some of which involve Thomas the Tank engines, Super Mario and his brother, as well as rascal eighties kids TV star, Tiny from Tots TV.

Duncan asked me to make a few books about them. Today he helped me make a film about the books. The stories are, um...original. Anyway, they make me smile.

5 Aug 2008

Faces


I just had to blog this. Duncan just brought me a picture he'd drawn. He explained his art to me. Pointing at each face in turn, he described the emotion they each represent. Going from left to right, from the top, they are embarrassed, grumpy, worried, sleepy, frightened, cross and finally sad.

Blah to the theories that autistics can't read facial expressions.

Dirty Sleeves

In a shop today, as I paid one staff member, her colleague engaged Duncan in conversation.
Seeing him remove all the wrappers from a packet of Fruit Pastilles (chewy sweets) she said, "I hope you're not going to put all those in your mouth at once!" Duncan replied, "Yes I am," probably not hearing or just ignoring the confusing part of the question, "at once".
"Oh my," said she, then noticing a dirty mark on the sleeve of his top, she asked "oh, what's that, is it toothpaste?" Duncan, slightly worried said, "yes toothpaste," then coming to me continued, "I'm very sorry Mummy, I made a mistake. I'm sorry I was cheeky." (There's a bit of Thomas the Tank script in there.)

I assured him he was OK and that he hadn't been cheeky. I know the old lady was trying to be nice, but picking out a stain on a little boy's sleeve, that's entering dangerous territory. When I overheard her initial question, I was almost certain Duncan would tell her it was some boogies. And well it could be.

4 Aug 2008

Weekend Walkies

Sunshine and showers, that's what we've had for most of this summer. I've noticed that even on the wettest, greyest and potentially most miserable day, the sun breaks through for a time. The children run out when the rain eases or stops. I've heard complaints about the terrible summer we're having, but being with the children has allowed me to notice how much sunshine there's been too.


We've caught loads of rainbows. When we all took Pippy for a walk in the evening, a spectrum of colour reached across the sky. We headed for the path beside the station. Duncan took a turn holding the lead. Pippi loved it.

The boys played at being steam trains for a while. The ran along the path, then when it forked, Duncan said they were going down the 'branch line' and they dashed down 'Gordon's hill' shouting "Stop wheels, stop! I'm going too fast!" and other lines from Thomas the Tank engine stories. Then they both ran straight back up the hill, and repeated the game multiple times. They sure are fit.

On reaching our street, Duncan had to stop to admire the red Renault Clio car and try to sneak a look at the front door of the house where it's parked. There's a thick, high hedge surrounding the house which has heightened the mystery of the house and its inhabitants. It's all very exciting.

I stood in the drizzle, adopting my usual stance of Duncan observation, ready to call out or, if necessary run to intervene. I have become slightly more hands off as time progresses.

2 Aug 2008

Me and My Girl

Lady and I spent the day together in Belfast. We travelled in by train, and after a bit of a wander around the gathering point for today's Gay Pride parade, with Lady picking up a rainbow pencil, wrist-band (message: respect differences) and some Rainbow Drops sweets, we headed to the Victoria Square shopping centre.

Here's Lady by the pretty yellow Jaffe Fountain which we think would look at home in the palace of a Disney princess.

We browsed the shops, and I discovered that I'm a size larger than I thought (grrr).

Feeling hungry, we set off to find grub. I'd fancied going to Nandos, but herself isn't too fond of chicken so that was out. But while wandering along hoping to be inspired, we caught sight of the Pride Parade on Donegal Place, so we stood to watch it pass.



Eventually I remembered that I'd brought a camera and took a few snaps. I like the juxtaposition of Belfast's City Hall, a potent symbol of the city's allegiance to the British crown, dour industrial past and fervent religiosity, with the parade and rainbow flags.

Lady had asked what it was all about, so I explained how people have been and still are, discriminated against because of who they happen to love. She knows about diversity in race, culture, gender and disability and it was easy to explain how differences in who people love are just as natural. She thought the men dressed as women were funny but asked why they weren't embarrassed. I told her that they're making a point, that they are letting people know that they can dress how they want, but that they're just trying to look good or funny too.

There were loads of posters and stickers about Iris. One women held a banner saying "I (or was it we?) love you Iris." Others had stickers saying something like, "Iris is the sick one" a sentiment I'd tend to agree with more.

Perhaps in part due to the abominable statement made by that woman (she's an MP, and wife of the leader of our regional parliament) in the media recently, the parade was far bigger than I expected. Most of those I saw were young. I'd expected more family members, mums and dads walking alongside their children. But perhaps that's not needed, what do I know! Anyway, it was good to see their energy, hope, defiance and pride.

So anyway, the girl and I carried on with the important business of shopping and Lady asked to have her ears pierced. I consented; for years I've told her to wait until she was 10, and that's only 8 days away. She choose little sapphire-like studs, and without even flinching, got them installed. And very pretty they look too.

Cups of coffee and hot chocolate gave us a mid-shop boost, and eventually we headed for home. It had been a lovely day together. My beautiful daughter is such great company.