Blogging About Disability part two: A Firefly Community post

In the second part of this two-part post on Firefly Community, on the subject of blogging about disability, I talk about what we should take into consideration when choosing terminology to use when blogging about (another person’s) disability. 

PLATITUDES AND ATTITUDE

A friend shared a post today about the oft-quoted, and irksome phrase ‘Special babies only come to special people’, and it put me in mind of this short post I wrote two years ago:

Platitudes and Attitude.

A note to well-meaning people.

You say: ‘Special babies only come to special people’. I know you think you mean well, I know you think you are paying me a compliment. But you are not.

You are holding that phrase out in front of you like a talisman against the evil eye: reassuring yourself that it could never happen to you, because you are ordinary, just the same as everyone else, not ‘special’ or ‘different’ like I must be. There’s nothing about you that attract that kind of luck.

Well, guess what? I’m just like everyone else too. I’ve done nothing good or bad in my life to attract God’s eye, either.

I’m just like YOU.

This little boy is my baby, I carried him in my womb, fed him at my breast and he’s one of only three people who can call me ‘Mummy’. That’s the most special thing in all the world. And the most ordinary.

AWARENESS WEEK #3

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Down’s Syndrome does not discriminate.
We are all born without prejudice. One thing I have noticed about very young children is that, presented with an unfamiliar person or situation, they seem to look for something recognisable to help them make sense of what they do not yet understand. Thus, if Freddie sees a man with white hair and beard then, no matter what the man’s skin colour, style of dress, or how many arms and legs he has, Freddie will interpret him as a ‘Grandad’. He focuses on the similarities and not the differences. Small children see the world through eyes unclouded by acquired prejudices, which is why, in thought and word, they so often cut right to the heart of the matter … and the person.
I hope Freddie will always retain this ability. What a pity so many of us lose it.

OH, BROTHER …

‘Think what it’ll do to your children if you have a baby with Down’s.’

Those were my mother’s words when I got the results of my nuchal scan.
I think the following pictures tell you all you need to know about the relationship between Freddie and Big Sister (Big Brother is camera shy, but has become very adept at wiping noses and not reacting when Freddie jumps on him and licks his stubbly cheeks. Slowly.)
As for Granny — she thinks the sun shines out of his bum, which is just as well because his trousers are forever sliding down.

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SO FAR … SO GOOD

So far, it hasn’t been as bad as ‘they’ said it would be. Down Syndrome is not the future you would choose for your child, but it’s not the end of the world, either.

When I was told that there was a 1-in-12 chance that the baby I was carrying would have Down Syndrome, many people (medics and family members especially) were of the opinion that if I went ahead with the pregnancy my life would be over; I would have nothing to look forward to for the rest of my days but the incessant daily grind of being a carer, trying to meet the all-consuming needs of a disabled child.

I didn’t believe them.

So, with the life of my unborn child at stake, I closed my ears and dug in my heels.

I read many things that address the issues concerning ‘Special Needs’ families, some offering information and advice, some offering moral support and information. Many of the latter use phrases like ‘Warrior Mom’ and ‘Momma Bear’; they talk in highly emotive tones about the day-in-day-out struggle to meet their child’s needs and battle the prejudice of others. they are uplifting and inspiring; they make you sob into your morning coffee. While I have no doubt that many parents out there will find their experinces reflected in these articles, they do not reflect the experiences of all ‘Special Needs’ families. They do not reflect mine.

So, I wanted to offer an alternative view. I hope it will be a reassuring one. Because so far, life with an extra chromosome has been pretty ordinary.