No desk to call my own: who exactly has “poverty of aspiration” round here?

Another day, another story about the Department of Work and Pensions (DWP) “workfare” schemes, where people are made to work at any old job for their state benefits, rather than being paid a wage. We already knew that forcing people into this kind of programme does not lead to improved levels of employment; today’s story is even more disheartening. A survey carried out by Mind found that for people with mental health issues, workfare actually makes it harder for them to become “work ready”, since 83% of participants stated that using the programme had actually made their mental health worse.

It is clear that as far as the Government’s ideas about “improving employability” are concerned there is an over-reliance on the idea that simple barriers stop people who are disabled by mental health conditions from working. Pretty much all the DWP schemes I’ve read about assume that we don’t have jobs because of a lack of something that can be fairly easily remedied. A lack of knowledge about how to carry out job searches or put together a CV. Lack of resources, such as an interview suit or travel costs. Or a “poverty of aspiration”, an odious assumption that we end up lying around in bed all afternoon or spending our time at a day centre because we just haven’t any goddamn grit and ambition and need to be sent to work in Poundland to develop these traits.

Except of course I know how to write a CV. I have interview suits (although thanks to antipsychotics I may not be able to squeeze into them now). I have all sorts of qualifications, so yeah, I actually have the ambition thing down, thanks. I job search endlessly, even when in crisis, tormenting myself by looking at posts I’d be perfect for – if only…

Here is a list of things that I still, almost four years since I first went off sick, cannot do:

• Predict what my mood state might be next week
• Cope on fewer that ten hours’ sleep a night
• Get up before 9am without adjusting the timing of my antipsychotics so that I have to go to bed as soon as I’ve eaten (and before the optimal time for taking my lithium)
• Guarantee to show up at a desk somewhere on regular days at regular times, even on a part time basis
• Guarantee not to cry all day
• Focus if I have brain fog or hypomanic distractibility
• Work more than two full days in a row without showing signs of becoming unwell
• Commute into central London where all the good jobs are.

I cannot make or will myself to get past these issues and force myself to be “work ready”. Disabled people’s organisations have long made the point that many workplaces do not or cannot make themselves sufficiently enabling, supportive and flexible to support disabled workers. And although I can sometimes work, and often want to, realistically I cannot see any organisation managing me around my bipolar. I do not think it possible that I will ever again have a desk to call my own.

Which is why over the past couple of years I have been self-employed. Being my own boss means that I can decide exactly what I am and am not capable of doing. It means that if I put in two hard days of training, I can block out the rest of the week to recover. It means I can balance work outside the home – like training, public speaking, meetings, field research – with things I can do from my sofa, such as writing articles or reports or reviewing documents. And because everything I do is for a mental health or disability organisation, when I’m really not well enough to complete something or attend something, the various people I work for understand. That doesn’t stop me from feeling terrible when I have to hand work back, even when I’m in crisis.

The downside to my current job is pretty huge: I don’t make enough money to live on, but I make way too much to be within the DWP’s “permitted earnings”. People see me tweeting or blogging or on television and often assume I must be making money from those things. I read somewhere that only 2% of people make money from their blog, usually through advertising, and I can assure you I am firmly in the 98%. Nor do I get paid to speak on the television or the radio, or to blog for a mental health charity. These are all things that fall into the category, “Stuff I do for free in the hope it eventually leads to paid work” and indeed much more paid work is coming in than last year. There is no way, however, that I will hit the tax threshold. I won’t even get close.

This means that without a partner who can pay the majority of the bills, I couldn’t afford to keep doing what I am doing. Even with tax credits it wouldn’t be manageable. I would have to give up doing work that I believe makes a difference, stuff like researching into people’s experiences of mental health services, or training people in Mental Health First Aid, or providing a service user voice at professionals’ conferences. I’d be back to a place where my bipolar would be a hindrance, not an advantage. I simply wouldn’t be able to wait and see if my business could grow to a point where I might be self-supporting ad become a taxpayer again. I would have to stop it all and decide whether to claim ESA this time or whether to go onto Jobseekers Allowance. And then I would have wait for the day when I was summoned on a course to teach me how to get a job, which would most likely be so unhelpful it would make my mental health worse (costing the state more in healthcare).

I know exactly who has poverty of aspiration for mental health service users, and for disabled people in general. And it’s not me.