Just when I thought I’d seen the worst the Department of Work and Pensions had to throw at us, they came up with something new. A document has surfaced which gives guidance to those who face disability and illness. The advice includes:
“Avoid words that sound worse than they are.
You may find it helpful to use official diagnosis terms, e.g. Multiple Sclerosis, PTSD
Equally, you may wish to avoid terms such as depression, M.E., or low back pain, etc. and use more general terms such as; low mood or a mental health condition, a fatigue-related condition, an ongoing pain condition, etc…”
Having suffered with ME for most of my life, I am well acquainted with stigma and misunderstanding, but for the DWP and Jobcentre to actually suggest that I should avoid using my diagnosis – well, ironically, I’m still yet to find the appropriate words.
The shadow minister for disabled people, Marsha De Cordova, raised her concerns about the advice in the House of Commons and there was outrage in the press. But once it subsides, we’re still left with the feeling that we just don’t belong and have no place in the working world.
To me personally there’s a further irony. I have actually done as the DWP suggests. I do hide and obfuscate my illness when it comes to the world of employment.
I was forced to attend mandatory jobseeker meetings recently as a requisite of receiving employment support allowance. I was quickly told that I was overqualified for this particular jobcentre to be able to find me employment. Same old story really: I fell between the cracks. My CV is fairly interesting with some decent accolades, but I can’t maintain a nine-to-five working life due to the unrelenting impact of the illness. I’m left on the sidelines of the working world.
Like so many other people with ME, or other pain and exhaustion based illnesses, you simply do not know what your health is going to throw at you from one minute to the next. Continuity is laughable. For the jobcentre to tell us how we should speak about our own conditions is deeply insulting and goes against every unwritten rule in a patient-led narrative.
We have been instructed to manipulate the facts and lie in order to stand a better chance of attracting employment which inherently will not be suited to our nuanced needs. But even if that worked, it would simply get us into a job we’d be incapable of doing.
As I mentioned in a previous blog, we need to reinvent the workplace to allow disabled people to have access – making print bigger, moving workstations to the ground floor, and also on more substantial issues, like timings and workloads.
Give me a job to do and I’ll stubbornly get it done, but you really wouldn’t want to see the carnage that my life and health goes through in making it happen. I know that each and every task that I undertake will be paid for with an inordinate amount of pain, with potentially days lost to exhaustion, and with my loved ones picking up a lot of slack.
And yet, I still choose to write this blog from the safety of anonymity. I fully understand how much of a hypocrite this makes me. It’s just easier for me to maintain the masquerade and pretend to be a working member of society than it is to hold my hands up to the fact that I’ve never been able to find paid employment and I rely on my parents and partner in equal measure to ‘keep me’.
The real solution to the question of disabled people and work is hard and expensive: Making workplaces more open and thinking about how to help disabled people operate within them. Instead, the SWP just told people to self-censor their illness so they could sneak in, and didn’t care what would happen afterwards.
The author of these blogs wishes to remain anonymous, but they are on Twitter at @ImBrokenBritain.
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