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Lazy? No, just disabled… life with an invisible impairment – #100days100stories

Guest post by Carol, an administration manager from Leeds. Carol has Ehlers-Danlos syndrome, an invisible impairment, and has shared her experiences as part of our 100 Days, 100 Stories campaign. Last year, she worked with us on a film raising awareness of the extra costs disabled people face.Head and shoulder shot of Carol dressed in black

I was once in a lift with a very, very senior manager at a company I used to work for. I was going up one floor, but I needed to take the lift because I struggle to manage the stairs.

I pushed the button, and he looked at me and said: “Only going one floor, are we? Aren’t we lazy?” I smiled and said: “No, just disabled.”

To be fair to him he was mortified, and it made me laugh more than anything else. And he was always extremely considerate of my needs after that. But it struck me that that’s exactly how the world often sees disability.

No middle ground

The assumption seems to be that either you’ve got a wheelchair, or have some other very obvious impairment, or you’re not disabled at all. There’s no middle ground.

It’s present even in the symbols we use. The universal symbol for disabled facilities is a person in a wheelchair, but that’s not necessarily what a disabled person looks like.

I have something called Ehlers-Danlos syndrome hypermobility type, which affects your connective tissues. Among other symptoms, it means your joints are very prone to injury. I have also had something called Perthes’ disease, which means I now have osteoarthritis and need a hip replacement.

I can’t walk very far, I can’t carry heavy things, I get tired very quickly and sometimes my joints partially dislocate.

Sometimes I limp, occasionally I have to use a walking stick, and often I’m wearing joint supports under my clothes, or taking a lot of painkillers. But often, you can’t tell that I am disabled.

People’s reactions

Because I don’t look particularly “disabled”, people are surprised that I need adaptations at home and at work, or that I might have extra requirements.

There have been lots of times where I’ve said something like, “Actually, can we get a taxi because I can’t walk that far?” and had blank looks back in return.

On a good day, I can walk about 160 paces without too much pain. That doesn’t get me even as far as the bus stop, so I’m completely dependent on my car.

I have a blue badge that allows me to park in disabled parking bays, which is an absolute lifesaver, but I’ve had some unpleasant run-ins with people who think I shouldn’t park there.

I get stared and sighed at when I’m climbing out of my car, as people realise I’m not elderly or in a wheelchair. People have literally run out of buildings to tell me to park elsewhere.

I know they’re trying to do the right thing, but it’s an awkward encounter that I could do without – especially since I often can’t get a disabled space because a non-disabled person has used it to pop to the cash machine!

Better support

Social faux pas aside, there are bigger problems with the way society tends to ignore invisible conditions. Because they aren’t there on the surface for everyone to see, it’s very hard to get the right support.

Often, I see doctors who have never heard of Ehlers-Danlos and ask me how to spell it, so it’s no surprise when NHS services struggle to help someone with my condition. I’m prescribed lots of  painkillers, but I can’t drive if I’ve taken them and if I can’t drive, I can’t do much.

I’ve had to change career, partly because my impairment was not supported by past employers. I’ve adapted my lifestyle, my hobbies and my expectations of life.

With a bit of consideration and help I’m capable of working, living independently and making a useful contribution to society – as are many, many people with invisible impairments. With just a bit of extra support and understanding our lives could be so much easier.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.