lifestyle

I wish caring for disabled people was seen as a long term career commitment, not a stopgap


Having a PA – one that you can trust, feel comfortable with and can rely on – is a rarity (Picture: Sam Renke)

After shielding at my family home in Lancashire, I have finally returned to London.

Work commitments, hospital appointments – and the fact that my mum most likely wanted to get rid of the human dustbin that had been eating her out of house and home this past year – all meant that I had to take the plunge and brave the transition home.

I’m feeling rather optimistic as I have a plan in place. I’ll remain shielding until my second jab. Working remotely actually works in my favour; as a wheelchair user, navigating the city doesn’t come without its anxiety inducing barriers. 

Plus, with the longer summer days approaching, I’ll be able to sit out on my communal terrace instead of being cooped up in my small flat.

I awoke happy to be in my own bed, regaining my independence in my adapted home with the help of my Personal Assistant. I employ a PA for 15.5 hours a week, via the Direct Payments Government scheme, to assist me with daily living and ensure I maintain my independence in a disabling world.

Having a PA – one that you can trust, feel comfortable with and can rely on – is a rarity. I say this having been in receipt of Direct Payments for around 15 years and having employed over 20 PAs in that time.

Unfortunately, I think some people see the position of PA to a disabled person as a stopgap rather than a long term career or vocation, like nursing or teaching.  

In my view, some of my past employees have taken the position without much thought about what the job will entail. Rather, they appeared to take it simply because it fitted in with their own lifestyle – a part time thing that suited their circumstances at the time.

Just the other day, I heard a radio advertisement asking for care workers that used the words ‘vulnerable’ and ‘less abled’. Not only was I wholeheartedly offended by the terms used, as they painted a picture of someone to be pitied rather than someone you value, but because it did little to encourage those applying to consider themselves an asset to creating a more accessible and inclusive environment for the person they’d be caring for.

Recently Sarah Rennie, an accessibility specialist who employs PAs on a 24-hour basis, told me she has similar concerns after hearing a radio advert promoting council jobs for care assistants. She said, ‘I was unsettled to hear a voice quoting an apparent worker stating “the job is great because it fits around my responsibilities as a parent.”’

While not wishing to undermine the burdens of women as unwaged caregivers, Sarah and I are both worried that the job is being positioned around the lives of workers, not the people they’d be caring for. 

Sarah added, ‘The advert demonstrated the Council’s desperation to sell the profession for the perceived ‘perks’ because they know the roles are underpaid and undervalued. We have to ask ourselves what attitudes and prejudices does this foster in the applicants?’

It just reinforces the narrative that disabled people aren’t a priority in society and that they should be grateful for anything they receive.

Thinking back to the days where I didn’t have a care package in place, where I fell foul of a ‘postcode lottery’ when it came to receiving adequate funds to reflect my care needs, my life was rather empty. I don’t mean that to sound melodramatic in any way, what I mean is my health suffered, my independence – or lack thereof – suffered. 

As for my career, without the right support, I had little energy to concentrate on anything that I wanted to do. Simply put, I was merely existing rather than thriving and enjoying life.

Every day, I had to battle with simple tasks such as loading the washing machine or doing the dishes, which would even result in me getting fractures in my arms or ribs at times. I had zero autonomy over my life and my mental health was at an all time low.

Yet, is it any wonder why care work, specifically for the disability community isn’t always taken as a valued career path when we still as a society do not see disabled people as equals or people with lives? (Picture: Sam Renke)

When I have had to reach out to the disability community and ask where I should advertise for a PA – other than the obvious forums set up by local authorities, which can often be slim pickings – I’m often told by other disabled people who also have direct payments to head to Facebook and look for pages like ‘Aussies abroad’ or ‘Kiwi backpackers’. 

It strikes me that even disabled people have resigned themselves to the fact that care work or becoming a PA is rather transient and having people come in and out of your life, dropping you in the lurch without any fair warning as I have experienced in the past, just seems part of the parcel.

Yet, is it any wonder why care work, specifically for the disability community isn’t always taken as a valued career path when we still as a society do not see disabled people as equals or people with lives? A perfect example of this is when booking assistance for a train journey, you have to book 24 hours in advance because disabled people don’t live spontaneous, rich, exciting lives right?

Having a societal structure that sees a job as a PA/carer as a long-term, stable and rewarding career path instead of a short-term role that suits the needs of the employee not the employer, would benefit everyone involved

Granted, any relationship professional or otherwise needs to have compromise, yet as a disabled woman I feel as though I make sacrifices above and beyond on a daily basis whether that be a trade-off between job opportunities, my ability to get on public transport, or even go to the bathroom when I’m out with friends. I should not have to plan my life around someone else’s schedule when I am employing them for a vital role.

Perhaps the fact that care workers, for the most part, are on minimum wage is a contributing factor too. Earlier this month the Supreme Court ruled that carers/PAs who sleep over to assist through the night would not be entitled to minimum wage for those hours. For me this not only undermines the caregiver but also the role which is, in essence, allowing disabled people to access their basic civil rights.

If we viewed care work differently, and disabled people as those who are disabled by their environment – for having assistance removes many of the daily barriers we face – it would not only benefit the individual but the wider community. Having a societal structure that sees a job as a PA/carer as a long-term, stable and rewarding career path instead of a short-term role that suits the needs of the employee not the employer, would benefit everyone involved.

Disabled people have a lot to offer if only we are given the tools and support to live independently.

Do you have a story you’d like to share? Get in touch by emailing angela.pearson@metro.co.uk.

Share your views in the comments below.


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