I know you’re trying to be nice – #100days100stories

Amanda’s six-year-old daughter Lucia has cerebral palsy. In this guest post from May 2014, Amanda talks about how people’s attitudes can make life awkward for her family. We’re republishing Amanda’s story here as part or our 100 days, 100 stories campaign

Amanda and her husband Anthony with Lucia, Georgia and Roman
Amanda and her husband Anthony with Lucia, Georgia and Roman

The moment other parents hear that Lucia has cerebral palsy, we have to deal with their preconceptions about what disabled people are like. We get people talking loudly and slowly, and people saying ‘What’s wrong with her?’ The answer is that nothing is wrong with Lucia. She just has cerebral palsy, and sometimes uses a wheelchair to get around. ‘Lucia’s wobbly legs’, as our other two children, Roman and Georgia, describe it! You get almost pitying looks from other parents – and you know, I wouldn’t change Lucia for the world.

Support online

I joined Scope’s online forum soon after Lucia was diagnosed, and it has been brilliant. Sometimes, when Lucia is ill or tired, we do feel sorry for ourselves, and having other parents to talk to and keep us positive is a huge help. You can also pick people’s brains for practical advice on things like special needs statements, disabled badges and mobility aids. We were very unsure about getting a wheelchair for Lucia, but people on the forum said to go for it – and it has been amazing. It has really improved our quality of life.

Don’t see the wheelchair

A couple of times, people have said, ‘You know, if you didn’t tell me I’d never have guessed Lucia is disabled’. It’s really not what we want to hear. When it comes to disability, you just adapt – we don’t need to pretend Lucia isn’t disabled. Sometimes we get stopped when we’re out shopping, and people make a massive fuss of Lucia’s wheelchair – ‘Ooh, look at the little girl, look at the wheels, aren’t they pretty?’ I know people are trying to be positive when they give us extra attention, but it’s really awkward for us. We much prefer it when no one stops us, no one cares, everyone just moves on. We know you’re trying to be nice, but we would much prefer if you didn’t even see the wheelchair. Even if you’re saying something positive, I’d respect you far more if you saw the person in the chair instead.

At Scope we believe that disabled people should have the same opportunities as everyone else, so let’s end the awkward.

Find out more about 100 days, 100 stories and read the rest of our stories so far. 

4 thoughts on “I know you’re trying to be nice – #100days100stories”

  1. for my child who has ASD I get sick of hearing there really intelligent aren’t they? Or whats his special talent?

  2. I am a 50 year old lady, born with cp. The best thing my parents ever did for me was to let me lead as normal a life as possible, and make me independent. They fought to get me into the same schools as my brothers and sister. I too have a wheel chair but did not use it very often because of the unwanted extra attention. My parents were told I would never sit up unaided or hold down a proper job. I did both. I worked for a major high st bank for seven years. I still live independently and thank god every day, that my parents had the forethought to not wrap me up in cotton wool, to support but not stop me having as normal a life as possible, my parents are awsome people!

  3. I completely understand, my son who is 5 years old and has cp goes to a mainstream school and when i take him there in the morning i get a little irritated at some of the comments that other parents say or even look, they are not being nasty but overly concerned, my son is already going to have a few extra hurdles in life and i just wish people would see beyond the array of equipment and see a beautiful, loving if somewhat stubborn at times little boy that wants the same dreams and hope as all other children do.

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