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a1000shadesofhurt

a1000shadesofhurt

Tag Archives: disability

Ways of seeing

26 Wednesday Sep 2012

Posted by a1000shadesofhurt in Visual Impairment

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blindness, cane, disability, light adjustment, night vision, peripheral vision, retinitis pigmentosa, sight loss, visual field, visually impaired

Ways of seeing

Being different is bad. It’s a lesson most of us learn in the playground. Mercifully for society, it’s a lesson most of us go on to unlearn. But for some miserable unfortunates it sticks around. And, for me, it did more than stick. It got swallowed. It became physically part of me – like a filter, a lens through which I see the world.

When I was seven, my family moved to Tokyo. Mum enrolled me in a ballet class. We arrived at the dance studio to discover that none of the Japanese kids had ever seen a blonde girl before. I still have visions of that hall of mirrors, those armies of identical giggling ballerinas.

When I was 12, my family moved to Sydney. On my first day at school, the teacher asked me to stand in front of the class and tell them where I was from. So I did. Then she repeated my every word in a mock English accent. If I had to pinpoint the exact moment I learned my lesson, I’d say that was it. It was while living in Sydney that Mum began to notice I was having trouble seeing. I was always bumping into things – overhanging branches, toys left on the floor. Initially she found it funny, but after our first appointment with the ophthalmologist, she stopped laughing.

I was diagnosed with retinitis pigmentosa. It is a genetic disease that affects the parts of the eye that deal with peripheral vision, night vision and light adjustment. There is no way of knowing how quickly the condition degenerates into blindness. Some lose their sight before they turn 20 and some retain a small window of vision throughout their life. I was referred to a psychologist to help me digest the information and advised not to take my driving test. I was also advised to learn how to use a white cane.

In typical teenage fashion I told the psychologist where to stick it and reacted to the idea of a cane with such fury that my parents never dared raise the subject again. I would, quite honestly, have rather died than take a cane to school. Thankfully, I never had to. In fact, I didn’t have to tell anybody unless I chose to do so. My strategy of denial worked wonders – though I was terrible at netball. And most of the time I forgot I had a problem at all. Until I bumped into something. And then it would be a battle to hold back the tears.

I confided in my close friends and they took my arm as we strutted around Kings Cross on Saturday nights with our fake IDs. They led me into darkened pubs. They even helped me assess boys on dance floors using, as I recall, the terms: “hot”, “semi-hot” and “feral bush-pig”.

The enthusiasm with which these girls adapted to my strange disability was touching. And baffling. I never really understood why they didn’t just leave me at home.

But this happy arrangement was short-lived. I moved back to England for university and reverted to outright denial. I walked slowly and appeared vague. Fellow students thought I was permanently stoned, which was fine by me.

When I moved to London and began a career in television documentaries, I did everything I could to appear normal. Occasionally I’d miss a handshake and have no idea how to deal with it. It was the most stressful time of my life.

Today, aged 34, I have very little sight. While the average visual field spans 160 degrees, mine spans four degrees. I am registered blind with my local council. I know this sounds shocking. But it isn’t. I function pretty normally. I move my eyes around and get as much of the picture as I need. I’ve never been happier. I have a wonderful husband, a gorgeous two-year-old daughter and I love my work. The fact I bump into things a lot is very low on my list of worries.

I still don’t use a white cane. I’m not proud of this fact. I really ought to. I own one. It sometimes lives, folded up, in my handbag. I took it out for a spin the other day. I’d been inspired by comedian Adam Hills joking about the Paralympics on Channel 4.

I went back to Sydney recently. My friend Jane noticed my tinted glasses on an overcast day. “Are you wearing sunnies cause your future’s so bright?” she quipped.

Later, as we dined in Bondi, we were gossiping about a girl at school we had both admired. “She had something special. She had what you had,” said Jane. “What’s that?” I was taken by surprise. “I dunno,” said Jane, “She was from the outside. She was different.”

“Why do you think being different is bad?” asks Seema, a therapist who is helping me use my cane. “Some people love to be different.”

This makes me think of my Dad. When I was young, he would hold my hand and skip down the street singing in his native Italian. Mortified, I would beg him to stop. “For a girl who is so intelligent,” he would exclaim as I wriggled from his grasp, “you are emotionally stupid.”

Then I think of my tiny daughter. One rainy day, we were in a charity shop when she persuaded me to buy her a glittery snorkel mask. Later, as we walked through the downpour, she held her umbrella and wore that mask with such beautiful beaming pride that several strangers stopped to smile.

Seema explains that, when we are young, the lessons we learn can become embedded in our subconscious. They become almost physically part of us. Those feelings are deep and hard to shake – hard, but not impossible.

“Being different isn’t bad,” she says gently as we end our session. “Being different is a gift. It is something to be cherished.”

If you judged the world on advertising, you wouldn’t know disabled people exist

27 Friday Jul 2012

Posted by a1000shadesofhurt in Uncategorized

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advertising, disability, Downs Syndrome

If you judged the world on advertising, you wouldn’t know disabled people exist

A Spanish designer, Dolores Cortes, has chosen a baby girl with Downs Syndrome, Valentina Guerrero, to appear on the cover of her US catalogue.  It’s a bold move guaranteed to generate a little extra publicity and I welcome her decision; personally I find the image refreshing, it makes me smile to see a cute, happy young child regardless of her disability and it’s constructive to stir up the conversation about disability in advertising again.

I began modelling back in 1994 after winning the UK’s first competition to find a disabled model; this was four years after breaking my neck and acquiring my disability, paraplegia. Though I’ve had countless jobs for dozens of large international organisations and hundreds of press interviews it wasn’t until 2010 that I was finally booked for a mainstream advertising campaign for a high street fashion store, Debenhams, and only then with the backing of Gok Wan and the How to Look Good Naked team.

Advertising and marketing is about generating publicity for a product, encouraging consumers to purchase said product generating income for their client; the industry is about making money, not charity and social change unless there is a possibility to make a profit. Advertisers are generally reluctant to use a disabled model unless the product is targeting disabled customers, disability isn’t deemed suitable or aspirational for mass appeal.

However, they’re happy to take our money; high street stores and supermarkets know they have customers with disabilities, accessible changing rooms and specially adapted trolleys are provided to make our lives a little easier. There aren’t statistics for the number of disabled shoppers online, there isn’t a box to tick upon payment yet a vast number of disabled people shop online for ease; to avoid transport and access issues, to avoid changing rooms being used as hanger storage and to avoid negative attitudes.

Designers and advertisers aren’t naïve, they realise how much free publicity this drums up for their product, let’s be honest how many of us had heard of Dolores Cortes until she used Valentina in her catalogue? Now her brand is being discussed on websites throughout Europe and the US. I don’t know her motivation, extensive publicity, financial gain or promoting social inclusion but I support the decision in the same way that I support most brands that choose to promote equality and inclusivity by using models with disabilities. This week I noticed a wheelchair user in an advert for Barclay’s Bank and a blind woman is currently featuring in a Dove advert; again both positive moves that I welcome, but I ask that it’s consistent, not sporadic, as only then can it bring us closer to inclusion as the norm, not something deserving of press fanfare.

The Paralympics games have made disability very visible throughout 2012, but it’s a particular image of disability, the healthy, athletic hero or heroine; what about those who don’t fit that mould? Where’s the dad with a disability driving his kids to school? The wife with a disability shopping supermarket aisles for dinner? The son or daughter with a disability playing with their computer console?

I accept that people may find it hard to believe that simply including disabled actors and models in advertising could change attitudes, but if it couldn’t then why is it such a lucrative industry which spends millions researching exactly how to change consumers preferences from one brand to another? We are frequently subject to subtle messages from advertisers, everyone can remember an advert that struck a chord, that made them laugh or cry; there are even television programmes dedicated to ‘The 100 Greatest TV Adverts’. We are inundated with advertising all day, on websites, in magazines, on radio, in television commercials, on public transport; yet to see them you would hardly know disabled people existed. Cadbury’s, Sainsbury’s, Kellogg’s, Cow & Gate, Proctor & Gamble, M&S, Johnson & Johnson, Heinz and Ikea; well known brands you’ll find in most homes, but will you find disability in their advertising? No. Yet disabled people and their families are consumers too, we pay to purchase these brands, we eat, bathe and wear clothes just like the rest of the population.

Representation in media is a form of acknowledgement by society; consider Cherylee Houston’s character, Izzy, in Coronation Street or Cerrie Burnell presenting on CBBC, both received press attention because of their difference, but now that is barely mentioned, they are simply accepted by viewers as performers on television like their able bodied colleagues. I welcome the day when we might have a kick ass Disney heroine who just happens to have a disability so disabled children can see representation from a young age.

I hope other brands eventually choose to acknowledge their disabled customers and use disabled models; I had a great time, worked with some amazing people and hopefully changed a few attitudes along the way. Did I ever harbour ambitions to roll down the catwalk in couture week in Paris? No, I’m disabled, not deluded.

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