Don't assume I have a carer just because I'm disabled

Sometimes people ask me if I have a carer – a question which I find highly inappropriate, ableist and offensive.

Still, let’s clear this up: I live alone in London, but I do have a young woman who works for me. I don’t call her a carer, she is my personal assistant – a much more fitting job title as she assists me and allows me to be as independent as I can be in a disabling world. She doesn’t care for me – that’s the responsibility of my mother, who makes me chicken soup when I’m sick.

The idea that I’d need someone to ‘care’ for me, as one would do for children, doesn’t match the reality of my situation. She doesn’t just help out physically, she also helps me run errands and stay organised. She’s more like my confidant – we even go for drinks together.

In order to pay her, I receive 15.5 hours of Direct Payment support package a week. This is a government-funded scheme that allows the person in need of additional support to source their own PA, rather than being assigned a carer by a local authority. It’s an important distinction – I want my PA to work for me.

It took me a long time to reach out and ask for support and I felt like I’d failed by asking for help. But the truth is I’m a better, happier, much more confident and safer person because of my PA. 

For many people with disabilities, finding support is life-changing, giving them greater independence and a better quality of life. However there seems to be a shortage of these much-needed workers.

Over 1.45 million people work in the sector at the moment, but it is predicted that we will need 650,000 more workers by 2035 to keep up with the rising numbers of people aged 65 and over.

I survived without having a PA for a long time, but now that I have her I am truly thriving.

Figures from the Department for Health and Social Care show that 96 per cent of care professionals feel their work makes a difference to people’s lives, yet we do not have enough people doing this work to meet the crucial demand.

I survived without having a PA for a long time, but now that I have her I am truly thriving. I was once ashamed of this need, as I saw it as a sign of weakness. Admitting that I had support fed into those negative stereotypes of disabled people being different, and incapable of living like everyone else – it felt like we could never be equal productive members of society. 

Now I don’t have any shame in it at all, I just wish everyone who needs this kind of support were able to access it. 

Attitudes have to change and there needs to be a greater understanding of disability as a whole. Inclusion within every aspect of society is vital such as education, employment and the media. Only then can one fully comprehend and empathise with the needs of the disabled community.

Once this change occurs and disabled people are treated equally and are valued, there would in my view be more people eager to become support workers as they recognise that an inclusive society is a better society for everyone.

Furthermore, austerity has impacted the disabled community for years and thus made it near impossible to access vital funding such as direct payments. The Government needs to stop financially targeting the disabled community and recognise that investing in us actually makes economical sense in both the short and long term.

Give the man a rod and he can go fishing… give a disabled person the support they need and they will thrive and contribute towards society.

To become a care worker you don’t need a degree or prior experience but you do need to have empathy and compassion, be patient and a good listener. You need to see disability in a completely different way most people do – through negative stereotypes and poor representation delivered through media.  

We need people with the unique ability to do this to be encouraged to move into such a rewarding job, not scared away from it.

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