Melanie’s story

Something most people don’t know is that hidden and invisible disabilities make up the majority of disabilities. The wheelchair is a global signal for disability but only 8% of UK disabled people are wheelchair users. If everyone got that we could start to change the narrative.

I have Bertolotti syndrome. Impacted spine, pain and mobility, Multilevel Scoliosis, Spondylitis, Ehlers Danlos and anxiety. When people say, ‘you don’t look disabled,’ I think they are trying to say ‘you’re doing well even with a disability.’ But it doesn’t come across that way. It can be quite rude.

I often get looks and comments from people who think I shouldn’t have a blue badge. I’ve asked someone to move from a disabled seat on public transport and they said no. When you explain why, sometimes you are questioned. I was once asked to carry a container, but when I said I couldn’t, they said they found it odd as I could carry my handbag. It’s not up to the public to judge if I am disabled enough.

Language matters to me. I wish people were less afraid of the word disabled. It isn’t a disgusting word, there’s just too much stigma around it.

People say they prefer ‘less abled’ but I feel it is up to disabled people to self-identify.

One term I do hate is ‘superhuman’ – it makes the rest of us feel inferior. What the public never sees is that if someone has done something amazing one day, they may have seen them on a good day. When I push my body, people rarely see me recovering and healing from the effort. The same applies to what we need when we’re in public.

My needs can change day to day. Just because I have refused help in public once, it doesn’t mean I might not need it again.I wish people would always ask disabled people if we need any help – It helps me to know the offer of help is still there, even if I’ve said no before.