Friday, May 1, 2009

Blogging Against Disablism - A Photo Essay

It's Blogging Against Disablism day, and here's a photo essay on my gorgeous (step)daughter, Snail.

I've been in Snail's life as her stepmum since she was 4. DinnerDad and I have 50% custody of her, in a week about arrangement. We do Friday to Fridays, she has just gone back to her mother's today. Here is Snail.



Snail has Pacygyria, a congenital brain malformation that causes physical and mental disability, and epilepsy. She is lucky not to need a feeding tube, and has always eaten and swallowed just fine. She's in a wheelchair, but has mobility in a kind of bum shuffle, so that's how she gets around our place! Here she is in her chair on a bushwalk.



Her little sister, Lolly, also bum shuffles, as she learned this from her Snail! Here they are together, off 'sploring

Snail needs our help to feed herself, get dressed, and do most day to day activities. She's in nappies too, though we're starting more toileting with her this year. She has around 200 words, but understands a lot more than that! She uses lots of assistive devices, she has a walker (that stays at school), orthotics, glasses, and a special computer with a touch screen that she can use to play with and communicate. She takes lots of medication for her epilepsy, which is still not well controlled.

Snail is the most happy, beautiful natured child. She's simply delightful. Though don't get me wrong, she can throw a tantrum with the best of 'em! She loves to read books, play with dolls "a baby", and her real baby, Lolly,


play in the water (or the bath - she is a total water girl!),



and she LOVES cars, and "mo mo's" or motorbikes. Sometimes DinnerDad is riding his motorbike somewhere with us in the car, and Snail goes spare with "dadda!! Dadda!! MO MO!!!", it's hilarious. She loves music and Snail-y dancing is a delight to behold.



She also loves the garden.



She can get frustrated with lots of things, as her world can be limited. She hates to be left behind. She doesn't like reverse! She can be jealous of her little sister. She loves her Selene and wants to sit with her ALL THE TIME! She wants to watch Blues Clues and can chuck a fabulous shitty if we all watch something else. Most of her grumps are about her difficulties in keeping up with the rest of us. We do what we can to make this easier for her, but we can never fix it completely, it's just part of our lives.

Snail has taught me a lot (in a completely corny way, [ETA insert unicorns here]) :-). If there's a point to this essay, it's that living with a disability can be hard. Don't make it harder by staring, avoiding, and not getting the fuck out of the way when you see the mother with her one year old in a sling and pushing a kid in a wheelchair! Maybe smile. Don't act shocked if you talk to Snail and she just keeps saying "hello, how are you" and isn't "normal" after all. Listen.

4 comments:

Dinner-Dad said...

Sweet...

Casdok said...

Great essay!! Loved all the photos and your last paragraph!

seahorse said...

Love the photos in this, and the lessons you've passed on.

Never That Easy said...

I'm so glad you were able to say so much about a child you obviously love very much. And I particularly appreciated that last paragraph :)