Tuesday, 2 July 2013

Back in the Big Smoke

I've been in London twice in the last couple of weeks.  The first time, on the 20th June, was for a meeting at the McPin Foundation, a new mental health research organisation which intends to use - and pay - peer researchers.  I don't know whether I will be able to help in any of their projects - they will be looking to match experiences and skills to any work they embark on, and it's all very new, so they don't know themselves yet.  I hope I can be involved though.

The Foundation paid for about thirty people with 'lived experience' of mental health problems to travel to London and participate in this meeting, which was intended to clarify their aims and objectives.  I was really pleased to take part in the event - apart from anything else, I had been feeling a bit 'stuck' and it was good to get out of the house for a day.  It was edifying as usual to meet others who had been ill and recovered and who are now using what they have learned in such a positive way.

As usual, the best thing about leaving the family, even for a day, was coming home, and that is why when I had the opportunity to go to London again yesterday I was not looking forward to it quite as much.  I felt bad about leaving the children again so soon, and Paul had to take an afternoon off work to look after them.  And in the evening I had to go out again, to my book group.  I had been home for less than an hour at that point and as I was saying goodbye to my elder son he wailed, 'But we've barely seen you!'

I did feel guilty.  But I need to remember - all Mums do - that we are people too, and that we have to balance our own needs with the demands on us.  Luckily for me, I like looking after my kids and most of the time there is nothing more useful and important that I could be doing.  But actually yesterday's trip to London turned out to be really worthwhile.  It was an event at the Rethink offices, with some officials from the DWP, who are formulating a new Disability Employment Strategy and who wanted to hear from the people who would be affected.

I managed to say my piece, as I always do, about the damage done by labelling - how people are ruled out of the workplace, out of society, by these damning diagnoses.  I thought to myself, I know this is not what the meeting is about, but it is relevant, and the more people who know about it, the more likely things are to change.  And actually the civil servant I spoke to about the damage done by a diagnosis of schizophrenia certainly seemed to understand what I was saying.  She explained to me that change is a thing of the time.  She used the example of the Wolfenden report (she had been interviewed by Lord Wolfenden when she entered the civil service).  That report seemed to change attitudes to homosexuality overnight - but really, she said, people move towards social change when the time is right. 

I took that as encouragement that it is worth agitating, worth explaining, reiterating the importance of abolishing the schizophrenia label at every opportunity.  Each little push in the right direction will add to the momentum and help it build. 

The DWP officials both seemed very understanding and knowledgeable individuals, in fact.  They listened to us all carefully and courteously and I really felt that they had people's welfare at heart, and that the issue of cost was not the only thing that mattered in their policies.  I learned a lot too - everyone around the table had stories to tell.  Some had experienced horrendous treatment but others had really positive experiences of support in the workplace.  And what everyone seemed to agree on was that they wanted work - but not any work, something that would enrich their lives, something they were suited to.

It made me look at my own situation slightly differently.  I am quite happy at the moment with what I am doing, writing from home with the odd foray out into the working world.  But if I ever do need to find a 'proper' job, I would make it a priority to find a job for which I am qualified.  As good a job as I could get.  I have spent too many years thinking of myself as less than I am, if that makes sense.  I suppose it all comes back to that missing sense of self. 

Although, in a way, I don't think there is anything inherently wrong in taking a job for which you are overly qualified.  Sometimes even the best people have to work their way up in an organisation.  And plenty of professionally qualified people from other countries work in quite menial positions here, in order to support themselves and their families.  There's no dishonour in it.  It's just that I have done enough menial work in my time, and now I'm getting older.  I need to be a role model to my kids too.  I don't want them ever putting themselves down, or allowing other people to do so.  They need to learn to value themselves.

Anyway, back to yesterday's meeting.  I was keen to make the point that while people should not be forced back into the workplace, they should definitely be helped back into it.   Work is therapeutic, not least because it gives people social standing and a place in the community.  The problem lies in judging when people are ready for work - they may not have the confidence to try it, often because of the risk of losing entitlement to benefits and the difficulties inherent in claiming them again. 

I wish that I had tried harder to find decent work after my second breakdown - but I really did not think myself capable of it.  And maybe I wasn't - it's easy now with the benefit of hindsight, to see how things might have been better, but it has taken me twenty-five years (since my first breakdown) to get to where I am today.  Perhaps I needed all that time to properly recover?

It is a fraught subject - it is horrible to see and hear about people becoming ill because of the stress caused by fear of failing work assessments.  And yet we shouldn't ignore the fact that there is another side of the coin.  I personally know several people who have stopped claiming benefits in the last year or two because they thought they would not get through the work capability assessment.  They are now working, and have grown in so many positive ways as a result. They were not deliberately malingering, they just did not know what they were capable of until they tried.

It's the same in my own case - the more I do, the more I find that I am capable of.  I don't fear embarrassment any more - sometimes in fact, I think there is a benefit to being 'mad' - my diagnosis is practically a licence to behave eccentrically so I should probably take advantage of that as an opportunity, rather than trying to prove myself sane (which is kind of a self-defeating effort.  The harder I try to appear normal, the weirder I present, I am afraid).  The key is relaxation, and learning not to care about other people's opinions. 

Repeat after me: 'What other people think of me is none of my business'.   

I am learning that most people in the world are kind, and not judgemental.  And that those people who are unkind, and who are judgemental, are not worthy of my consideration and I certainly should not try to adjust my behaviour in order to make a good impression on them.  Basically, I am learning the lessons that I am trying to teach my children.  In fact, I think they kind of know these things instinctively anyway, because they are secure in themselves.

Anyway, I don't think I will be off to the Big Smoke again for a while.  I am going to be really busy with the kids' schools for the next few weeks - concerts, assemblies, sports days, etc and etc.  Then it will be the summer holidays, which means the beach, hopefully.  And in September - back to my writing.  The thing I love best, the thing I do best, and the thing that brings me the most reward.  Apart from parenting, naturally. 

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