Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
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- By Mama Lewis, March 6, 2014
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Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
Guest post: Someone called my daughter with CP a “Spaz”
Francesca Cook is the mother to two adorable children; the oldest, Maddy, has Cerebral Palsy. I’m honored that she allowed me to print this very personal response to the r-word: spread the word to end the word campaign. The campaign was set up in the States by The Special Olympics to stop people from using the word “retard” and had a huge social media following last week.
Last week, someone called my 8 year old daughter who has Cerebral Palsy a “Spaz”. To say I was shocked was an understatement. I’ve not heard that word since I was in school. I think that it’s safe to say that as of last week I feel it’s one of the most offensive, insulting words I know. But the honest truth is that at school (ahem, back in the good old 1980’s) I used that word all the time when referring to school friends, my parents – anyone I wanted to imply had behaved in a certain way… whilst not understanding the connotations and origins of the word in the slightest.
Why would I? I’d never met a disabled person in my life at that point.
If you don’t know how the term Spaz came about, back in the 1980’s the charity SCOPE was called by its previous name, the Spastics Society. The phrase spaz or spaccer soon grew from this as a derogatory term used to refer to adults or children with a disability. The charity had to change its name. In addition, you may remember Joey Deacon, an adult with Cerebral Palsy whom Blue Peter featured in the ’80s in an attempt to raise awareness of a man who had achieved a lot despite his disabilities. It was a disaster, children mimicked him in playgrounds all over the UK and the term ‘You’re a Joey’ was coined and he became a subject of ridicule. Disability awareness was at an all time low.
It had been years since I’d heard the term, “Spaz” and it filled me with dismay and horror when my daughter told me what had happened. How is it that the name caller – a child of perhaps 10 or 11 knew this awful word? Surely the only way he did was to hear it from someone from an older generation. This child, walked past my daughter playing in a front garden, and called her this disgusting name based on her appearance and mannerisms. I then had to explain to my child, not only what it meant, but the history behind the word. She looked gutted. “I felt really hurt Mum,” she said. Maddy doesn’t have a learning disability, she is above average ability in class, but her speech is slightly slurred, and her stiff shaky arms display her physical disability only too clearly.
Coincidentally, the week before a very old friend came to stay with me. She sat in my living room, we drank lots of wine and tea, and talked about her life for the last few years and she used the word Spaz, and Spacca repeatedly to describe all sorts of life situations…eg: He was a right Spacca. Memories of college days popped into my head as I remembered suddenly that she had always spoken like this. However, ten years later, where once it hadn’t bothered me… my mouth fell open, and as the evening went on, I felt uncomfortable, and uneasy. Worse still, the following week someone had then chosen to use the same word – but in a malicious way, intended to hurt and ridicule my daughter. I now hate the word being used, in whatever context, and for this reason I will from now on point it out to people if they use it in front of me.
This now leads me neatly back to the lovely Mama Lewis, and all that she and many others have had to say on the word “retard” and the campaign to ban it. In my opinion, the campaign whilst aiming to be useful is in fact useless. There will ALWAYS be derogatory terms to describe others and their perceived differences but what we should be campaigning for is to educate our children to live and work alongside disabled people without prejudice. Maddy’s mainstream school which has a resource base for pupils with physical impairments is one of the few places I know where all disabled children, some very profoundly so, work and play alongside their peers, without being separated into SEN classes or special schools. Her school is truly inclusive. The children that attend are the adults of the future, in a school that models how we should live as a society. I can tell you now that these children do not see disability in the same way.
Why is it then that the adults of today are still allowed to let their prejudices and ignorance influence the society of the future? THAT is what we should be campaigning against.
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Want to read more about the r-word campaign? Read the Mama Lewis response on BabyCenter Why I won’t ban the word “retard” or the original post that sparked off the debate on Love that Max Would you call my child a retard?