– but care is not tragic

For disabled people like me, care can be brilliant and has enabled me to experience university, holidays abroad and nights out dancing with pals. There is nothing to pity in that

By Lucy Webster

I’ve seen it so many times: the head tilt, the look of concern and sympathy. You would think I had just announced a family bereavement, rather than mentioned that, because of the nature of my disability, I need 24-hour care.

This response is not unusual. The thought of a relatively young person (I’m 27) needing care generates pity like nothing else. Behind the condescension, I suspect there lurks a specific dread: the reminder that, one day, you too could need care. The horror!

The thought of having care workers conjures all sorts of unpleasant images, including the idea of a life cut short and potential unreached. Care, to most people, is the bad thing that happens before you die. But to need care long before it becomes end-of-life-care signifies a failure of youth; the epitome of tragedy.

Well, I’m here to tell you that’s not true. For disabled people like me, care is brilliant, fulfilling and life-enabling. It is so good that lots of us are desperate to receive more of it, instead of wishing that we needed less. The choice is not between a life with care and a life without it, but between a life with care and no life at all.

There is a fundamental misconception about what care entails. People often assume it to be much more clinical than the reality. Yes, my personal assistants (PAs) dress me, wash me and take me to the loo, but they also come shopping with me, cook me tasty dinners and share a pint with me and my friends in the pub. We spend a lot more time laughing (usually at ourselves) than we do thinking about the bathroom (itself the site of much hilarity). Is this really what it looks like to live a tragic life?

The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.

Of course, relying so heavily on a team of care workers has its downsides, from recruitment to managing rotas, to just wanting to be alone sometimes. It’s hard. But life is hard for many people – yet no one would turn to someone who’s just been made redundant, for example, and say: “If I were you, I don’t think I could go on.” Some people seem to think they would rather die than have help brushing their teeth. It truly boggles the mind.

Many fail to see the possibilities that care creates – not to mention the friendships that flourish within the care relationship. My PAs, past and present, are some of my best friends – but even this sentiment can give rise to unwanted sympathies. People assume it means I can’t make friends elsewhere (for the record: also not true). My PAs are my friends not because they have to be but because we like each other. And because the bonds of trust, understanding and a shared lived experience are incredibly strong; often, they are the only ones who really see the effect inaccessibility and ableism have on my life.

Receiving care is anything but a tragedy. My PAs and I, live life at full speed. I defy anyone to look at us – really look at us – dancing round the kitchen or popping out for dinner, and feel sorry for us.

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