The working world isn’t built for those with care needs
My name is Matthew and I’m 25 years old. I have limb
girdle muscular dystrophy and I’m a powerchair user. I am a writer but also, I
work full-time as a customer service advisor.
Trying to gain employment
As a disabled person I’m often encouraged to be independent and congratulated for being so. But over the last year I learnt that there are discrepancies between the various services I rely on to allow me to live an independent life.
Early last year I suddenly found myself jobless and without a carer. There was no way around it, I would have to apply for Universal Credit. Part of the process is immediately attending Jobcentre appointments and filling in a booklet, documenting your 35 hours a week job searching.
After a few weeks I do find another job. It’s another customer service job, the only kind of job that is really pushed by welfare-to-work providers on disabled people. This is due to plenty of positions being available regardless of your educational background.
Managing your care needs
If you’re disabled and living on your own like me, you might rely on carers. For me they’re essential to get me up in the morning, get ready for work, and to provide personal care in the morning and evening.
One day I discovered that I could get personal care for free. I don’t want to think about the months spent faffing about when I could have been receiving care, but I was just relieved that I could finally not rely on my friends and family every day to live my life. I’m lucky I have this support network, not everyone does.
So, I accepted the job I was offered. But like lots of call centre jobs, I could start as early as 8am and finish as late as 8pm, it varies from week to week. However, carers must stick to the same schedule each week. I had to arrange one call at 6am every morning and one at 10pm every evening, so that I’m never late for work and don’t have to wait too late for them.
I can cancel the carers if I’m out past 10pm, but I have been sternly told off by one of the carers about cancelling too many times. I was told the council will just cancel my evening call completely if it wasn’t always used. Both of my calls are dealt with by the night shift, which is separate from the day team. There are fewer carers on this shift and it is more complicated to organise care with them. It’s almost as if the council do not expect that a disabled person would need to get up at 6am to go to work.
The endless battle for independence
It’s become clear to me that the systems that allow disabled people to have a quality of life are not built for people like me. The structure of Universal Credit encourages you to work whether or not you can. Once you do find a job, it is complicated to find affordable carers that allow you to get to work.
The benefits system pressures you to be a productive member of the workforce, whilst the council expects me to have no life, unable to accommodate the working hours you would expect a disabled person to have, and treated like an unruly child for daring to have a social life.
This is a complex problem with no easy fix. Do they want disabled people to work? Are we encouraged to go out and be productive tools in our economy, or to stay at home? Of course, our care, benefits and employment should suit us whoever we are. Yet even when you play by the rules, you must jump through so many hoops for a quality of life. To me, this instinctively seems wrong.
You can follow Matthew's journey on Twitter.
Have you found it hard to manage care needs and employment? Are there things you believe need to change? Let us know in the comments below.