My biggest fear: Would Chloe’s life be considered worth saving over a ‘normal’ 21-year-old?

Scope’s We Won’t Be Forgotten campaign is calling on MPs and Government to listen to the voices of disabled people and take action to prioritise their needs.

In this series of Real Life Stories, disabled people, parents and carers are sharing their experience of life under lockdown, and the impact it is having on their lives.

My daughter Chloe has never walked or talked, as a result of a blockage of her nostrils when she was a baby.

Today, Chloe is a happy 21-year-old with the loveliest temperament. She makes everyone who knows her fall in love with her.

We’re getting medication and nutrition delivered, but I’m worried

So far, we’ve been very lucky during this Coronavirus outbreak. We continue to receive delivery of all Chloe’s nutrition, (she is tube fed), as well as her medication and other essentials, like incontinence pads. 

Since the lockdown, the main thing that has affected Chloe’s everyday life, is her day care centre has been closed (quite rightly) and she is now at home 24/7.

I’ve received no contact from anyone except the day care centre, who ring on a weekly basis to check she is okay. But we’ve received no correspondence from local authorities or the government to advise us.

Would I be allowed to accompany Chloe?

My biggest fear is, should Chloe contract the virus and need to be hospitalised, would she be given the same care and priority as somebody more abled? In the doctor’s eyes, would her life be worth saving over a ‘normal’ 21-year-old?

I know this attitude exists, as we’ve encountered similar issues in the past. Chloe’s life should be no less valuable than anyone else’s!

I also worry about whether I’d be allowed to accompany Chloe into the hospital and be with her. I’m her advocate and her voice - nobody would understand her requirements like I do, and she has no way to communicate them.

And if Chloe were to get the virus and be hospitalised, I wouldn’t be able to live, knowing she was alone, scared and unable to convey her needs.

When you are accountable for keeping a person alive in the best of times, this current crisis we face is a living nightmare.

Coronavirus has been a disaster for disability equality. Support disabled people like Chloe and Jane.

Read more about our campaign to ensure disabled people are included in government plans for recovery and take action.

Together we won’t be forgotten. #WontBeForgotten