This week in Australia, a comedian decided to open her act at the Melbourne International Comedy Festival Gala (an event I’ve attended and watched on TV a number of times) with a line about how she hates when people tell her they have mild Aspergers or have celiac disease or are alcoholics.
'Because really, these people are just f'ed up idiots with behaviour problems.'
Cue: 2000 people laughing uproariously.
Sadly, apart from a brief discussion on Facebook, barely anyone batted an eyelid. I’m not going to give the woman any more publicity by saying who she was… but she’s not young, she’s not particularly controversial and she actually used the line to start a story about how embarrassed she was about mishandling a conversation with a woman with an intellectual disability.
It’s on YouTube, for posterity, but not as an example of vilification, just as a promotion for the Comedy Festival.
I’m somewhere between surprised and appalled.
My first thought was, Billy could be in that audience. OK, he’s seven now, and attending a comedy gala alone is a little beyond his capabilities. But, if the promises of Star Trek had come to pass and we were able to mess about with the space-time continuum a bit, adult Billy could be in that audience.
I thought about how he would feel having a room full of people laughing about how they really secretly agreed that he was indeed a busted unit. That his disability, an intrinsic part of him, made him a joke to the person next to him and the person next to them… in fact the whole theatre full of people.
And those thoughts bring out the fighter in me.
It reminds me again, that autism has turned me into that parent.
I’m the one explaining my kid’s behaviour all the time. I’m the one waiting to talk to the teacher or the doctor, again. I’m the one reminding, redirecting and refocussing all the time. I’m the one apologising. I’m the one behaving oddly, even though there are good reasons why.
For example, We are driving down the street, dog and boy in the car and we see friends. If I pull over and get out of the car to say Hi, the dog will bark, Billy will cry and the whole point of having a positive social encounter will be lost. So… I wave vaguely and try to sign, “I’m-sorry-can’y-stop-Boy-and-dog-in-car-means-I-can’t-stop-because-of-barking-see-you-soon-preferably-without-either-the-dog-or-the-boy.” To the untrained eye, I look like I'm swatting flies while trying to drive past someone I know without saying hello. Awesome. Really.
I am the one who won’t take no for an answer. I am the one who can’t come to the appointment alone, I’ll have my son with me because we don't have family here. I am the one who stays at the birthday parties, who sits on a knife edge at the cinema, and who feels guilty even saying things like this because I know how lucky I am to have a kid who can attend birthday parties or movies.
I’m the annoying one. The clinger. The over-protector. The one who makes excuses for her kid ALL the time.
And… I am the one who will not give up. I am the one who won’t stop hoping. I am the one who will never think it’s OK to take cheap shots at vulnerable people.
Why am I this person?
Because, in the future, teleporting or no teleporting, I hope Billy can sit in a theatre and not have to face a wall of laughter that is about him. I hope he can watch TV and not have to wonder why people are using him as a punchline.
And I really hope people will have evolved onboard weapons systems that can transform the process of heckling inappropriate comedians into serious business.
FWIW: The comedian's 'apology'. I know I said I wouldn't give her publicity, but...
Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.
I am that parent too
I love all that you write Valerie and this post was especially good
Me three. I am that parent too. Keep fighting. Keep being that oddball parent. I'm there too, doing my own quirky dance. Thanks for sharing. :)ReplyDelete
Thank you for being that parent.ReplyDelete
Thank God! All this time I thought I was the only "that parent" or as I more lovingly refer to myself "crazy mom". Glad to know I'm in good company! Never give up, never give in!ReplyDelete
hi valerie, thankyou for your honesty and for being that parent. as a parent to 4 teens...3 of them have autism, they all have other disorders and disabilities as well...i'm also that parent. i am my childrens advocate, guardian, fighter, full time carer and the list goes on. i'm the one that does not take no for an answer, that parent that is is often on the phone within the disability sector fighting for my childrens needs and rights. the parent that is at all their appointments and meetings. the parent that is fighting for the very right for not just the here and now but their future. i'm also the president of one of the largest asd support groups in our region. currently we have close to 200 families and individuals who are dealing with an asd or the impact of one within our member based group. sadly i watched the very section unfold right before me with the gala festival and wow i was embarrassed...but not for me or my children...for her because i knew the impact of what her moment on tv would cause...a great deal of destruction. arrogance is stupidity and just plain rude and discriminating. she has apologised on one of her facebook pages...however she has outraged an entire community...like you i'm one of those members in the community and i'm that parent. you are not walking this journey alone....all those dealing with someone on the autism spectrum are walking that journey with you. ♥ReplyDelete
Valerie, I was that parent too when my son was younger. I was the Mom with the boy that acted up in public, that dealt with the stares and the remarks. I was the Mom I know how you feel and it's tough.ReplyDelete
But guess what? My son is now 17, attending public high school without a one-on-one, getting good grades, getting excellent reports from his teachers and popular with his peers (though he doesn't yet make plans to hang with them). We can go to movies, to the market, pretty much anywhere without incident, though his attitude is sometimes something to not be desired. So you keep taking Billy out into his community and you be that Mother. It can really suck sometimes, but hang in there. He'll one day be a tall teenager, taller and heavier than you, that will be almost typical.
And you know what? It sounds really weird right now, but I bet you'll actually miss these days. Not the times when Billy has a meltdown, or embassasses you in public, or when you're so overwhelmed from the running around you had to do all day. But the sweet, adorable little boy that loves you unconditionally, that you read to bed each night, that you take to the park, to the zoo, to birthday parties. The little boy that he once was, so cherish him now, for the good and the bad. He's going to grow up, and the sweet little boy will be a loving memory that you'll hold dear to your heart.
I am that parent too Valerie. Keep fighting, unfortunately we also have to fight people's ignorance and insensitivity about autism as well as fight for our kids.ReplyDelete
Wow. I am so that parent. I am so much that parent that I can almost laugh at that horrible comedian.ReplyDelete
Not only am I that parent who hovers, keeps on driving, and spends 20 minutes telling the babysitter (yeah right, babysitter - I wish!) the medical history... I have celiac disease, too! So I must really make impression. Maybe I should take up drinking, too?
Seriously, people don't get it, and that hurts. It;s almost a relief, though, to hear someone being honest about it rather than putting on the pretend face and then rolling their eyes as soon as you turn your back. It hurts when they reject our kids for things that aren't there fault.
I for one am glad that you're that parent. Keep it up. The world is a better place for parents like you that do what needs to be done for their children, even when the world doesn't understand.
PS:And what exactly is *mild* Asperger's anyways...