Saturday, January 08, 2011

Adventures in Disability, Again

I'm seriously neglecting blogging at the moment (on both my blogs, and indeed at Where's the Benefit). But life is currently quite a struggle, and I thought writing might help a bit. So here is a new, if brief post.

When they say disability is a full-time job, they're really not kidding. Yesterday, which was supposed to be a work-from-home day for me, involved three awful encounters with professionals (two on the phone, via The Girl) that left me so exhausted and close to having a complete breakdown that, of course, no work got done.

I won't go into the ins and outs of the personal budget I'm hoping to get from social services which, while intended to meet my care needs, is very unlikely to do so, because of the ubiquitous 'computer says no' situation in which I and my needs are far too complicated for anyone official to begin to grasp. So let's just say that my morning was taken up with frustrating social workers and their departments' frustrating policies. It was the afternoon's (first) phone call that was really distressing, though.

For the past few years I've received lots of support from Access to Work, a government organisation that supports disabled people in work. They, like everyone else, are cutting back severely on their eligibility criteria. This means that, although I officially qualify for support as before, their support is now only given if my employer can't meet my (expensive) disability access needs as a 'reasonable adjustment'. This doesn't sound unreasonable, until you realise what this means in practice. I have a part-time lecturing a job this semester. I need a support worker in the classroom. I can't get up to write on the board. I can't get around the classroom, which will affect how I teach. I can't give out materials. I may need someone to read some of my lecture notes if I get tired. I can't operate the classroom computer or projector, because of accessibility issues. I can't bring materials into the classroom. And that's just the potential access problems I can think of right now. None of this affects my ability to lecture (I'm a good, experienced teacher), but it does involve access issues so complex that I *need* someone with me in the classroom to do the various practical things that I used to do, when I could leap around the classroom with boundless energy. Access to Work, however, are - get this - telling me to make a student, unpaid, do all this work. This would be unprofessional, unethical, educationally questionable, exploitative and downright unfair. But they see this as a 'reasonable adjustment' on the part of my employers. They don't care, of course, that if they don't provide this support worker I will have to give up this job, which will probably be the end of my just-splutting-back-into-life career.

So another fucking battle to get my needs met starts. I seem to have about one of these a month, at least. I'm currently also struggling with my university's disability support people, because of whose incompetence I've had to restart my PhD this month, and who cannot get their act together regarding my academic support workers (paid for from a student disability support fund, which is also very limited). Add in my battle with social services, and I think I'm having a revisit from my old friends, bipolar disorder complicated by neurodiversity. I have to go to the doctor and talk about changing my antidepressants ASAP. But of course, if I go to them and say "I'm drowning in disability administration that would make the most mentally healthy people feel depressed," they'll look at me completely blankly. This stress will be put down to my weaknesses, not society's attempts to make life so difficult for disabled people that we just kill ourselves so that we don't cost the government anything anymore. Ooh, and I'd better not say that to the doctor, or I'll be accused of severe paranoia. You know, I increasingly question how much of my mental health stuff is down to my brain being wacky, and how much is down to the effects of trying to live in a society that has no place for me and would much prefer I wasn't here. A social model of mental health? To some extent, I think that applies.

Right, that's all my self-pity got out. My Girl is asleep next to me with a migraine, poor thing, so I don't know if we're doing the sales today as we had planned. I hope so, 'cause I need a serious distraction.


Mary said...

Oh, agreed. I spent three hours the other day doing paperwork for Social Services (this is paperwork over and above the basic weekly timesheets and monthly PAYE stuff that I have to do as an employer of a PA).

Which doesn't sound like a lot, except:
1) the nature of my condition is such that three hours represents almost an entire working day. Not only have I been unable to earn any money during those three hours - I'm also unable to do productive paying work for the rest of that day.
2) I'm the sort of person who is on top of the day to day stuff, who had kept every document and filed it in a sensible filing system. If I'd had to hunt for any of it who knows how long it would have taken?
3) because of the type of work I do, I have at my disposal things like a computer, a printer/scanner/photocopier, a stapler I can use, a headset for the telephone. The average Social Services client may not have these resources.

Naomi J. said...

Mary, why don't you use a payroll service? You can pay for it from your direct payments. It's cut down my PA-related paperwork a lot (although of course there's still some).

Anonymous said...

Hi Nay, I think the doctor will understand the drowning in disability paperwork thing. Whilst I don't know *your* doctor, I've done a lot of work with GPs, their orgs, social workers and their orgs, lately. They all understand that the system is far too complicated for anyone to cope with - including them. Here's hoping your doctor (new, for your new location?) is of the same mind.

Never That Easy said...

I will never be able to understand why things that would apply to TBA people (ie: a stressful period in your life that leads to increased depression) doesn't seem to apply to people with disabilities.

Sorry that the battle with social services is adding to your problems - hope you are able to come to an understanding soon.

Carl Thompson said...

Forms I swear will be the death of me!

Oh, and nice blog you have here!