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.
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.
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.