Access to Work is great, but the problem that I find is that adaptation doesn’t account for many of the things I find difficult or that would be a problem. Of course getting the right chair or desk is hugely important, but there are issues beyond that which it can’t help with - such as reliability.
There are periods where, if I go out for four or five hours, I’m then practically unable to move for the next four or five days! Doing research or an academic job in my case would help as I could do much of it from home. I don’t need to be in the office to mark, or to read, or even to write. So, in theory that would be a way forward - and hopefully the research grant we have put in for comes through and off we go. But, beyond that, getting that kind of job isn’t exactly straightforward - not least because we only have one uni in close proximity of where I live. Obviously most people would move around the country to where the work is when it comes to that type of job - but moving away from the support network I have would not be a sensible move.
Of course, none of that means I’m sitting at home doing nothing because I’m always working on something.
But I think my own issue comes with the fact that the success of biologics in making me walk easier and being in less pain results in PsA becoming more “invisible” to others. No doubt people seeing me in the city could easily wonder why I didn’t have a job. And I do go into the city a lot - because I literally live in a flat adjoined to the shopping mall. The main Marks and Sparks is my corner shop. HMV is about fifty metres away (for the time being!). The city library is across the road. I can smell Costa Coffee from my flat. I’m very lucky in being unable to do much and yet be able to get to these places.
But there is that thought of what others think of me not working.
“Well, I always see him in the city…”
But PsA effects us in other ways too, it’s not just the regular join pain. The tiredness, the anxiety, the messed up immune system, the depression, eye problems stomach issues. I have bipolar as well - for about twenty-five years now - and that hardly helps.
But sometimes even I on a good day might think to myself “you should be working if you can get around like this.” But we don’t know when the good days and the bad days are going to occur, and its the unpredictability of what we have which is much of the problem - and when you think you can start doing something more, PsA comes back and bites us on the backside or slaps around the face to tell us we shouldn’t have been so stupid and we’re now going to be punished by feeling crap for a week.
Ideally, I would go into uni and teach for three or four hours a week. And I get asked if I want some teaching on a regular basis. But even that isn’t straightforward. Uni teaching pays very well. Even two hours of teaching a week would take me over the £126 threshhold that you’re permitted to work on ESA (taking into account payment for office hours, marking, attending lectures etc). The benefits system is bonkers. Under £126, you’re allowed to keep all that money plus your ESA. Over £126, you have to sign off entirely! So, if I go and do that teaching for, say, four months, I have to sign off for that time, be no better off during the working period (which I don’t care about), and then have to go through the whole rigmarole of signing back on again after.
In the past that wouldn’t be a problem. But now we have the ogre of universal credit, and any change in circumstance means I would have to go on to after finishing the teaching - which, in turn, means that me doing some teaching for three or four months results in me ultimately ending up around £45 a week worse off than when I started!!! Obviously I wouldn’t be worrying about that if my contract was for a year or two, but it’s no incentive for anyone who is disabled or unwell and thinking of doing some temporary employment just to see how they would get on.
I did speak to someone about this at the job centre once. And they told me that if I worked under 16 hours a week, I wouldn’t get more than £126. I pointed out that this was only the case if I were on minimum wage.
But then, those of us who have filled in ESA capability for work forms will know that the govt seems to think that the only work we are capable of is very strange indeed. We are asked how many pints of milk we can carry, whether we can make a mark with a pen on a piece of paper, and whether we can lift an empty cardboard box above our heads. I have no idea what job that would qualify us for!!!