This blog is in aid of Blogging Against Disablism Day. You can find some really fantastic blogs covering all sorts of issues related to disability here, and it’s also worth following both @BADDtweets and #badd2014.
According to our loving government all their cuts are being put in place to help us all in to work. Don’t you know that as people with Disability A can work, then people with Disability B must also be able to? And if someone with a mild version of Disability C can work, then of course someone with a more severe version can too! Why on earth would you want to treat disabled people on a person by person basis when you can treat them as one amorphous mass, those lazy scroungers, they don’t deserve more than that now do they?
Here’s a personal anecdote, I know someone with severe back pain who works. I have severe back pain and cannot. On the surface it looks like they are pushing through and trying harder than me, but there are significant differences if you bother to look. For a start, their pain affects their lower back, while mine affects my upper back. It means that different activities affect us differently, for example, she finds it incredibly painful to stay still. Staying still for her means her back locks up and she cannot move. For me it’s movement that causes my back to seize up. She can lift a decent amount without pain, whereas I cannot. Positions I find soothing cause her pain and vice versa. So while she can do a job which involves lifting and constant movement, I wouldn’t last half an hour. As far as I know the only things we have in common are that the pain is equivalent strength and we both find sitting upright painful (though for different reasons).
I have another friend who has recently developed back pain, this time in the same place as me, but again there are differences. Slightly less differences in this case. She is working a desk job currently but has had to take time off due to the pain, luckily her work have been fairly accommodating, and are now trying out different seats for her to see if that means she can continue working for them. But even a company that accommodating have still proved difficult to cope with from a disability point of view, they – like a few companies I know – have a policy of sending staff for a disciplinary if they have more than 3 absences (whether due to sickness or not). Even if those absences are only a day long. So by that logic, take a month of in one chunk and you are fine, take 4 days off individually and you are in trouble. I’ve fallen foul of this rule in the past too, as you can imagine.
As you can see, being disabled when it comes to work has two major problems to overcome. First is the huge variety of needs disabled people have in order to be able to work, and the second is how many employers are willing to make these adjustments/allowances.
I have some sympathy for employers, if you are trying to maximise your profit then you don’t want to be spending more on extra equipment for staff, neither do you want staff who cannot guarantee they can work all their contracted hours, or who need more breaks than your other staff. Not only is it not financially good sense, it can also breed resentment in your other staff, especially if the disability in question is an invisible one.
However it’s awful enough having a disability that’s debilitating enough to stop you working, without also being treated as an inconvenience or risk.
I miss working, it was stressful, especially as I seemed to tend towards fast paced, time critical jobs, but I loved the pace and I loved the pressure. There was nothing quite like getting to the end of a day, tired but kind of buzzed and satisfied that you’d beaten your goals (sometimes against all odds). I liked had physical work, despite being a petite girl (4ft 10 and slim), I know I could compete with people much bigger and stronger looking than myself. I took great pride in this, especially the look of surprise when I defied expectations.
I also loved the financial independence, I could pay for all that I needed and still have some left over to buy myself beautiful things (I have a weakness for 40’s and 50’s vintage), I definitely took it for granted that I was going to work all the way up until retirement. On top of that I was using spare time to study and teach myself coding. Everything was going smoothly, I was young and healthy with the whole world open to me. Like everyone else I’d suffered with the recession, being made redundant twice and work drying up when I was temping. But it was just a matter of time until the economy recovered and I generally didn’t have too many problems getting work.
Then my world got turned upside down. I woke up that morning in March 2009 unable to move and in immense pain. I was 24 and suddenly I went from being the girl who didn’t even know who her doctor was to the girl who divided her time between doctors, physios, hospitals and bed.
Once I was on painkillers that gave me some movement back I tried going back to work. It was just a desk job, I sat there, typed, answered the phone and did filing. Easy stuff. Much less demanding than my previous jobs, should have been a breeze. Turns out it wasn’t. My first day went well, the people were nice, the work was easy (if a bit dull), and I was good at it. I went home satisfied. But upon waking the next morning my back had seized up, I had to be carried to the bathroom by my then fiancé, he even had to help me off the toilet just to really improve the romance in our relationship. Of course I couldn’t work if I couldn’t do these most basic tasks. So I had to call and apologise. They were unhappy but accepted the situation, and I had the next two days off anyway so I’d surely be better by then. Which I was.
I’ll give you three guesses what happened next.
I had a good day at work, got home, and round we went again.
So when I rang that time they were more unhappy and a little less accepting. They asked if I could give them 24 hours notice if I wasn’t going to be able to work, I tried pointing out that I didn’t get any notice myself. They told me to call the next day if I couldn’t do my next shift. The next day I still hadn’t recovered so had to call again. This time they said that as I was on probation they no longer required me and that I could get in touch when my back was healed and they’d think about giving me another chance.
That was the end of that.
More recently I tried volunteering with a charity shop, that went a little better. But only because I was doing a 4 hour shift once a week. One day I volunteered to stay an extra hour, that was a mistake, I almost collapsed on the walk back to the car (just feet away). The next day I was wiped out, and unable to look after my son who was about a year old at this point. I’d even been taking regular breaks to go sit down, but to no avail.
I want to work again, but those two experiences scared me a lot. While I was at home and mostly resting I’d almost convinced myself that my back wasn’t all that bad, that I’d exaggerated to myself. Turns out I’d actually grossly overestimated what I could physically manage.
I do feel wasted at home, I never wanted to be a housewife. It was, in fact, my greatest fear when I met my now husband. Originally I really didn’t want children as I thought it would leave me stuck at home, once my back meant that was the case anyway I realised that there were worse things in life than staying at home with children. Right now I’m enjoying the fact I can be a good mum even though my body is in tatters. I can’t stay like this though, it wont be long until they are both at nursery/school, and then what? I sit at home all day, alone, bored and frustrated?
I know I’m intelligent, and I like to be challenged, I think I need to work. I just need to find a job willing to accommodate my particular needs.
What I don’t need is to be running scared from a government who refuses to even see the issues involved in working with a disability. I can’t just go do any job like I used to, I need to be careful that I am still left physically able to care for my children when I finish work, and I need to be careful that I don’t do further damage to an already worn out body. Especially as just time itself appears to be doing that for me. Now it’s not just my back, it’s my hips, my knees and my wrists.
I’m also still trying to find out what is actually causing all of this pain, with the vague hope that I might be able to stop or at least lessen it. But it’s hard to get the treatment or tests needed because of the cost. It’s apparently cheaper to leave me on painkillers for life, painkillers which have long since lost effectiveness, and which are likely damaging my liver.
If this government really wanted to help us back into work, they wouldn’t make it so hard for us to get the assistance we need.