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.

20 comments:

Allie said...

I think that nearly all such offensiveness comes from the fact that our society is so laden with stereotypes that we can find we're making use of them without even knowing we're doing it. Terms like "a mentally disabled child" just call on the reader to come up with a quick stereotyped image in their head, nod and move on. But the truth is that children are not a stereotype but a whole person, no matter what labels the world applies.

Making claims about what is "worse" for "a parent" or "a child" just buries real life experiences. It is a way for someone who does not have any experience in a particular thing to make claims for those who do. Good to see you challenging it. It drives me mad!

Sharon said...

Allie, yes exactly! People seem to think, "I read about people like that and it's terrible for them." "People like that" being any member of a particular group. But like you said, what they read is just a part of it, real people have various experiences both good and bad. It winds me up so much when people equate parent-of-disabled-child to suffering, or make any such judgement about what life must be like for X-people. Parenting any child brings highs and lows, that's what you let yourself in for when you decide to raise a child.

kristina said...

With the reports about measles here in the US and the UK, I've been alarmed to read about people saying "measles rather than autism"; autism continually seems to be synonymous with "what you don't want."

therextras said...

Continue voicing this, Sharon. You are helping protect many, many people with every parent and child who understands the safety of vaccination and every child with autism from potential discrimination.
You might want to look at posts by Orac at http://scienceblogs.com/insolence/.

Club 166 said...

The wolfwalker person sounds like they are a self centered 20 year old, who has been somewhat protected throughout her life, and hasn't really been exposed (or considered) a lot of the diversity that life has to offer.

At least she has chosen to stay childless.

Thanks for pushing back with your response. I'm sure that you got the person to think (at least a little), and I'm sure that there are dozens of other people that read your response and are rethinking their position because of it.

When we all consistently challenge stereotypes, society's attitudes will slowly change. Or at least that's what I keep telling myself.

Joe

Bev said...

Sharon,
Thank you for posting this. I will be saving wolfwalker's comment to use as evidence of the dangerous thinking that can (in extreme cases)result from the belief in and use of functioning labels. Better off dead? Wow. Just wow. But hey, xy didn't mean you so just get over it, huh?

Sharon said...

Yes Kristina, in almost every discussion, even on sites I like for how they put the case for science or feminist sites, autism and disability in general are synonymous with "what you don't want."

Thanks theextras. The terrible comments I've quoted came form Orac's blog, one which I like but have frequently been disturbed by what some people write in the comments of the science blogs.

I think you're right Joe and wondered if it was worthwhile tackling this person's views. But it was so unacceptable and disgusting I felt I had to say something. I can only hope that some people might just think again.

Bev, yes, as if I was going to be mollified by that half-arsed apology. It's like s/he's saying "Other kids might be better off dead, but your son's cute so not him."

Club 166 said...

Addendum:

I know I assumed that the writer was female (and that can be dangerous), but consciously did that after reading

...Being single and childless (both by choice) ...

That is not a statement that I have ever seen come out of a man's mouth. Men just don't think in those terms.

Joe

Nick McGivney said...

I still consider myself a novice at this game of having a child with disability. I haven't been away from 'normal' long enough to have forgotten how I used to feel when confronted with disability at an emotional remove. At face value I am inclined to let wolfwalker's comment stand, purely for its ignorance and naivete. Why? Because there are battles and there are battles. I know the road ahead is long. I know callous indifference surrounds us, and it is heartbreakingly peppered with true cruelty. Just from the comment, I don't think wolfwalker meant either. Just ignorant naivete. I will save my energy and try to be zen about such views, because I remember having them. They are incorrect, yes, and it is a good thing that you challenge them. I salute you, Sharon, for that. But if you can keep the powder dry for the cruel and vindictive ones, do so. In the meantime, I would guess that wolfwalker has learned a small lesson, much like I hope Mr Stiller has from our recent joustings. But you stay scrappy, missus.

Alyric said...

"Better dead than autistic" Grrr. It has however been around for a while especially in biomed circles. It's the awful stupidity of the anti-vaxxers that's got me riled. Having joined the ranks of the immuno-compromised (chemotherapy) the prospect of those mummy morons with their mini Typhoid Marys wandering the shopping centers preying on the unsuspecting, leaves me cold.

Funny thing, I have a lot less patience these days:)

Penny L. Richards said...

When I look back on my pre-parenthood expectations and assumptions about having a disabled kid, they weren't even close. The stuff I thought would be hard is no big deal, while the stuff that tests me and keeps me up at night with worry--all that was never even on the radar. And the joys--well, I probably just assumed there wouldn't be any highs, just lows. I couldn't have been more wrong.

In other words, I was completely clueless before I had kids, and so is this commenter. Good for you, pointing that out.

Heike said...

Oh dear! Talk about bigoted, immature and plain stupid. But then, what can we expect from someone who hasn't been even close? Time to stop walking with wolves and take some steps in the real world.

If it wasn't so sad it would be funny. Would wolfwaler recognise the prejudice if we changed disabled into black, or Jewish, or Muslim. You know that classic statement of "all Jewish people are this-or-that except you of course!"

You are spot on with your response to wolfwalke, and s/he shows their true colours in their response...

I have not vaccinated my kids according to the schedule. We more or less follow it, but give them all much later. It's not because of autism but becasue i just dont' believe in the timing of it all - so many diseases to deal with at at time when the immune system is still so underdeveloped. The whole timing is set to caputre parents while they are still in the post-birth medical system. But there is no reason why parents can't stay on top of their children's vaccination schedule themselves. And while i don't like the idea of pumping mercury into a child's blood stream, i think the whole debate is crap, excuse my language. Any good children's hospital will have access to single vaccines and either no or low mercury vaccines, which is what needs to be given to children with HIV-AIDS. Sue, it's not free and costs money. But do you belive in something only if it's free? Our kids get their MMR in three separate shots, spread over a longer time, at a later age. Works fine.

Hammie said...

And that, is why I am focusing on fashion at the moment. I will need at least 6 weeks of the kids being back at full time ABA school, with the resulting reduction in anxiety and ocds etc; before I can even contemplate reading about such things.
As for people who view autism as worse than well, the loss of a child: As a parent, there are so many things I learn every day, and twice as many that I realise I don't know. But what I do know is that we can never judge another parent for how they Feel. Wherever it comes from, you have to respect their feelings, even if you disagree with their opinions or actions.
I would say the same for anyone who desperately wants to have children, and is trying.

But when someone who hasn't had children, and chooses not to, tries to proselytise, well that is where my tolerance runs out. (and all I can think of is swear words)

There is no degree or "level" of disability where love and understanding run out. Love is unconditional, and the desire to care for and relate to the person within the percieved "level" of their physical, mental or sensory challenges is unlimited in my experience of parenthood.
Whenever I am asked by parents who have one child with autism, whether they should "go again" (having 2 kids with ASD I get asked a lot) I always say
Love Stretches.
If you have enough love to want another child, you have enough love to give to them no matter what happens. If you don't, then lavish all that spare love on the first one.

So good on you for taking it on Sharon, but don't let it get you down.
look for the light.
xx

ps, the spambot letters are spelling out my son's name as y----
How serendipitous is that?
y? because I love him xxx

FieldingHurst said...

My kid is vaccinated, but this boils down to that this is still America and the good of the many does not trump individual liberty.

This is not about measles, it's about stirring up fear for the sake of trying to regain some confidence in the system.

Forced vaccinations are the first step towards forced medicine.

Whether you like it or not, it is not our duty to be a part of any herd. There is zero doubt are 2 or 3% of the public who have issues with vaccines (not autism). The drug companies admit this and the vaccine court is proof of this. If this is America, you don't have the right to tell me what must be put in me or my child.

Just like with Gardasil and the talk of forced vaccinations. The government apparently sees a % of the public as expendable for the greater good. Can you say fascism?

In my case, my daughter was vaccinated at 4 months and immediately had a seizure. No more until the 6 month vaccine, when she started having LOT of seizures within a couple of hours of shots and eventually 300+. From the first millisecond, they all said "no way" the vaccines are related. That is the default position, which I think is part of the problem. Even though we know vaccine injury does occur, the first thing a lot of us encounter at least "appears" to be a deny, deny, no way, deny strategy.

I am sorry, but if the vaccines were not related, the government does a very crappy job of convincing me otherwise and surely could do better. Do we understand what is going on? No. Does that mean the case is closed? No. Are you going to rip me a new one for this post? Probably. :-)

With that said, I am not against vaccines and there are safer schedules and I wish we would focus on that, but the government doesn't seem interested in anything but getting them all in before 2 no matter the disease in question or risk of a toddler getting. The government could help their case and accomplish the same goals if they said, "OK, we realize there are some concerns, while we don't think there is a problem, here's a schedule that spreads things out some and gives the vaccines individually for those of you parents who are concerned about it and willing to pay more for a 'safer' schedule?"

Should measles be a priority. Yes, but it seems like providing and promoting a measles only vaccine would be a more productive way to combat it if it really is such a health crisis.

I understand everything you are saying, but I just don't think that this is not so cut and dry as both side make it out to be.

I am trying to be more open minded and am not as on board the anti-vaccine bandwagon as I was, but it is a very hard thing after a) seeing the seizures right after the vaccines and b)meeting so many parents with shockingly similar stories. The all out war between the two camps, does nothing to help anyone.

FJH

PS - I love your header art work. Did you create that? Does your child like Jay Jay the Jet Plane too? Thomas and Jay Jay used to rule the roost around here, but have been supplanted by The Wonder Pets and Mickey Mouse (finally, I thought I was going to have to watch those shows for the rest of my life).

Sharon said...

Joe, re, your addendum, yes I think you're right. I can't imagine a man saying he was single and childless much less making clear that these states are by choice.

Nick, I almost always wait a while when I see these things before deciding to go on and say my piece. Most of the stuff I read and disagree with, I ignore. But when it's on a site or blog I like or somewhere that gets a whole heap of traffic, and when the issue is something I know about and no-one else is stepping in, then I'll fire my mouth off. Yes you can't change every-one's mind, but often people don't even realise there's another side to the story out there.

This stuff doesn't depress me though. It's bad and I wish things were not so, but I won't let them get me down. I'll just get a bit, as you say, scrappy.

Alyric, now here's where these ideas are truly dangerous. I'm just surprised you have any patience for anti-vax selfishness these days.
I hope your chemotherapy works well for you and vexes you as little as possible.

Penny, it does seem that most people's notions about raising disabled children are way off. It's probable because the only 2 versions of people like us whose stories are told in the media, are those who rant and rail and suffer and hate everything about it, or the martyrs and saints who smilingly accept and deal with more than mere mortals are supposed to.

Bollox to both of those!

Thanks Heike, prejudice is prejudice. It seems to be still more acceptable to be openly bigoted about the value of disabled people's lives than for other differences.

It's great that your children are vaccinated, but I'll follow the schedule devised by medical experts.

Hell yes Hammie, other people know their own children better than anyone. I will still disagree with them when they try to justify what are known to be dangerous or potentially dangerous choices, like quack autism "therapies."

I don't think poor wolfwalker expected anyone to take issue with what s/he said. S/he probably thought the comment was oh so sympathetic to the plight of the poor, suffering autism parent. Bah.

And "love stretches", very nice!

Bree said...

How can someone who has not got kids even comment on what it must be like to lose or a child or live with a child with autism? It seems hes totally unqualified in both areas to be making any point whatsoever.

therextras said...

Just stopping by to tell you I've named you for an award on my blog. Stop by and pick it up. Hoping to send more people to your excellent blog. Barbara

speakingaut said...

Bree: How can people who aren't autistic comment on what it's like to be autistic? The same reason: people like to look like they know things, even when they don't.

Sharon said...

Hi FJH and apologies for taking so long to get back to you. I appreciate you taking the time to comment.

I'm not in favour of forced vaccinations but I think that parents should accept their role in protecting all children including those with genuine reasons to avoid vaccination. I don't understand the anti-vaccination movement's drive to persuade more parents to avoid vaccination as it just puts their own children more at risk as herd immunity levels drop.

And just to note, where you are may be America, but this isn't (I live in Northern Ireland) and most of the world isn't. Nor have I told you what to do and if I did, what power do I have?

I think this is about measles. The disease is spreading fast in the UK and other parts of Europe as well as in Japan. But then you probably already know that.

Is your government trying to force vaccinations? The UK government, under whose jurisdiction I live, advocates vaccination because the evidence shows it provides a huge benefit to the nation's health. The risks of disease out-way the risks of vaccination so much. That doesn't fit any definition of fascism I've heard.

I am sorry to hear of your daughter's health problems and hope that if vaccinations are to blame you can get some form of compensation. Yes vaccination injury occurs but it is so rare that it's not going to be the first reason doctors adopt in making a diagnosis.

"I am sorry, but if the vaccines were not related, the government does a very crappy job of convincing me otherwise and surely could do better."

Agreed, they could do better. The US agencies have tried collaborating with mercury-autism believers and this has only served to confuse the issues.

"Do we understand what is going on? No. Does that mean the case is closed? No. Are you going to rip me a new one for this post? Probably. :-)"
Oh dear no, I'll not be ripping anything. I'm sure your old one is functioning quite well.

I understand that many people are calling for a safer vaccine schedule. I am not qualified to give an educated comment on that, but it's my view that the current schedule is based on the expert view on how to best protect vulnerable infants and should only be changed when there's god evidence based reasons to do so. Parental instinct alone isn't enough.

I'm just one mum and I may get it wrong at times but I do try to understand the evidence, and that's what keeps me on the pro-science side of the division you mention. I hope you'll keep posting as it's good to discuss these things.

And thanks for the compliment about the blog header. It's just a Paint.net effect on on of our photos. My son has been through loads of special interests but Thomas & friends always prevails.

Sharon said...

Bree, agreed.

Barbara, thanks, I must check that out.

Speakingaut, thanks for reading and sharing. It's true that people like to pretend they know more than they do. I bluster on myself sometimes and welcome sharp eyed criticism of when I veer beyond my abilities!