Disability, Recovery, Stigma and Worth.

A slightly too long post.

I have read two articles in the last 24 hours related to a subject which I have been thinking about a fair amount lately. An excellent blog post yesterday by Dawn Willis (@Quinonostante) and a Comment is Free post in today’s Guardian, by SE Smith of FWD, Feminists with Disabilities (@feminists).

Both articles discuss recovery and the achievements of those with a mental health problem or disability.

Dawn talks about the Time to Change campaign to reduce the stigma surrounding mental illness, and some perceptions Service Users have of the campaign. “They were concerned that the campaign was continually promoting the idea that people with a mental illness always recover and become successful high flyers, and they said they felt the campaign was beginning to mislead the public into thinking that all people with a mental illness would recover.”

SE Smith discusses the media focus on disabled people achieving things ‘in spite of their disabilities’. She sees this as potentially causing difficulties to people with disabilities who do not achieve great success ‘against the odds’ and live ‘inspirational’ lives. “If the lives of disabled people are portrayed in this way it risks being used as a stick to beat those disabled people who are not sufficiently cheerful, who do not have enough “motivation”, and fail to complete certain tasks.”

Both of these articles speak to me personally. A couple of months ago I wrote a piece, on my previous blog, about a conversation I had with my support worker, on recovery:

“I had an interesting conversation with my support worker about this the other day. It stemmed from the fact that I constantly feel as though her help could be taken away at any point by my care coordinator. My CC is very good at highlighting how little I am moving forward. Whereas my support worker, or Recovery Worker as her little card informs me, likes to highlight how much I am moving forward. I’m not sure which is the right approach. All I know is that I am invariably traumatised before, and locked in the bathroom after, a visit from my care coordinator, whereas a visit from my support worker makes me only mildly terrified. I also seem to cry around my CC far more than my SW. My CC makes me feel like crap basically. Whereas my RW makes me mainly feel confused about how I ended up like this.

The problem stems, I think, from notions of ‘recovery’. Apparently there is a 2 year recovery cycle, which I think I am failing to follow as planned. My CC is all about me getting myself sorted out this year. Whereas my RW is all about forming a trusting relationship and taking our time. Both of them are apparently focussed on this 2 year recovery cycle, that I only recently realised I am on. My CC asks questions like ‘Do you really want our help, or do you just want us to leave you alone’ and ‘are you happy with the fact that you never leave the house?’ And most chillingly ‘Do you think you are getting anything out of having a support worker?’

I wonder if there is a chart they fill in, maybe with smiley faces, or green stars when I get past a certain milestone. Will I get given a lollipop when (if) I reach the fabled recovered land? Or attend a graduation ceremony where the newborn recovered, glowingly joyous and dewy with sunlight, attired in yellow jumpers, all throw our hats in the air, while our proud support workers take pictures and smile in a congratulatory way at each other? If I fail to reach a certain milestone on this 2 year cycle will it all be torn away from me? How will I know what this milestone is? Could they maybe give me a cycle path and bridleways map showing hazards and signposts, so I can better judge my progress, and look for paths that don’t involve angering bulls or red faced farmers.  Possibly there is a Wainwright guide I could order from Amazon. Maybe I need to invest in a better bike, my old raleigh cherry from 1985 has seen better days after all.

It strikes me as being all so artificial. 2 years. A nice round number. As IDS cheerfully repeated t’other week, if you’ve been on Incapacity Benefit for more than 2 years, you are more likely to die or retire than get another job. So this suggests, most people who are going through this 2 year cycle, are not going to be  well enough at the end of it to find another job. Which makes me wonder what will happen at the end of that cycle if I fail to recover.

Is it like an exercise cycle, will I just carry on cycling, with my support worker in tandem, completely failing to realise that I have passed this 2 year mark, and have failed, probably because it is rooted to the spot, and in fact I haven’t actually left my living room for the last 2 years.

Or at the end of the 2 year cycle, does the track just end, and will I fall off into the abyss? I’m having visions of a treadmill type accident, combined with a turtle/elephant/discworld scenario.

Anyway, to return to the conversation I had with my Support Worker. This is the question I asked her. What happens to people who don’t recover at the end of the two years? It turns out, far from travelling on in blissful tandem with their support worker, they get discharged. And at some point, they may or may not be permitted to clamber back on board. Presumably to restart the cycle all over again. At least by that time my leg muscles might have built up a bit more.

You have to wonder how many people are actually going to get lost in the meantime.  How many of us fall off during the first cycle. How many reach the end of the cycle but have not recovered well enough to join in the hat throwing ceremony. How many of us never actually access the cycle in the first place. And what if you never learned to ride a bike when you were a kid?”

A slightly more wordy post than I’ve made recently, but you get the idea. Its a very difficult balancing act. In trying to reduce stigma, and normalise disability, we are trying to highlight just how common mental health problems are, how normal it is, how many people recover if they access therapy or get on the right medication regime. The problem with this, is that many people don’t recover, or achieve great things. Many of us will just be trying to survive, trying to get through our lives, trying to adjust to not achieving goals or dreams. Does this make us any less ‘normal’? Is our worth less because we do not swim the channel, climb Everest, become prize-winning authors, or acclaimed artists?

Many of us with serious long term mental health problems are on treatments which give us tremors or tics, which make us lethargic or wreck our short term memory. Anti psychotics, mood stabilisers, benzodiazepenes, many antidepressants, and ECT, can leave us experiencing serious side effects. The voices may be diminished, our anxiety may lessen, suicidal thoughts may recede. But we can also be left a shell of our former selves. Even if we do recover enough to work, how many employers want to take on someone who might occasionally drool, and who forgets why they went into the kitchen 10 times a day? Is our worth less because we cannot bounce back from benefits into employment? Is our worth less because employers will not take us on?

Talking therapies in the UK are still focussed on CBT. Even for schizophrenia, CBT is a recommended treatment. This is in spite of evidence showing the ineffectiveness of CBT. Could it be the treatment of choice due to its relative cheapness? For those with a personality disorder, the Complex Needs Service might offer some hope of intensive specialised therapy. But the CNS is patchy at best, many counties offer no specialised therapy for those with a PD diagnosis. The services we do have are even under threat. While the Government says it is committed to Talking Therapies, cash-strapped councils are still cutting funding to services that provide essential counselling and therapy, such as the Rape Crisis centre in Leicester. Is our worth less because we cannot access the therapies that could help us deal with life events, or the symptoms of our illness? Is our worth less if those therapies do not work for us?

Yes, many of us do recover, many of us do work, and it is good to share that with the rest of the world. But it is not the full story. Some do not recover. Some will not work. Some will work part time or do voluntary work. Is our worth less because we cannot recover to what society says is normal? Is our worth less because we cannot work full time and be one of the ‘ordinary tax payers’?

My philosophical standpoint comes from a variety of influences. But it comes from a fundamental belief in the equality of all people. My worth does not stem from my bank balance, my qualifications, my occupation, the clothes I wear, the books I read. My worth does not stem from my achievements. My worth does not stem from defeating mental health problems, overcoming the odds, being a shining example, recovering and being a productive member of society. My worth comes from being a human being.

Yes it is good to tell the rest of the world that people with disabilities are just like them. We are ‘normal’. But that is as true if we are paralympians or housebound. It is as true if we are prize winning journalists or never work again. It is as true if we are world famous opera singers or live in a residential home. It is as true if we are MPs, or work as trolley attendants. Its as true if we wear a tux and present the BAFTAs, or wear purple and end up homeless.

By only showing the most successful people with disabilities in the media and in campaigns, we are implying to the public that we all recover, that all disabilities can be overcome. And we are demonstrating to those who do not recover, who do not achieve ‘great things’ and ‘overcome the odds’, that we are worth less than those who do.

We can’t remove stigma by pretending that we are other than what we are. We shouldn’t have to.


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