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.
If you would like support getting into work then take a look at Scope's employment services to see how we could help. There also is employment information on our website.
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.
