Independent Living Needs Support

Many people understand that in the social model people with impairments/experiencing mental distress/difficulties need support to overcome disabling barriers. Yet in Mental Health Services this support is increasingly conditional on ‘recovering’ so the support can then be stopped. For those with long-term conditions, this amounts to being victim blamed and shamed for always needing support. This can amount to a form of disability denial. We are working hard enough already just being alive without also being stigmatised as not trying hard enough to get better, and fit in with social and economic expectations of being ’normal and productive’.

Unrecovery Artwork In The Wild

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Gary Writes:- On Wednesday I was admitted to an acute psychiatric ward yet again, after attempting suicide. On Friday I decided to draw Recovery in the Bin’s Unrecovery Star as a way of explaining why I can’t ‘recover’ from my mental distress and how the Social Model of Madness is so often ignored by professionals working in mental health settings. Recovery, in my opinion, has become a buzzword in mental health settings. It’s not that I don’t want to recover, but it is the failure to realise the social, political and human rights issues that stop my recovery.

I began drawing the Unrecovery Star at the table in the communal area of the ward. Patients and staff were interested in what I was drawing and began to ask questions which I answered as best I could without too many personal details.

My named nurse asked to speak to me privately about my art work. I explained to her that mental health services seem to only focus on my ‘symptoms’ and diagnosis of ‘Borderline Personality Disorder’ with ‘psychosis’. The answer, especially when I am sectioned, seems to be to add more medication and the root causes of what led me to be in a locked ward are often not even discussed and ignored. In fact the staff often don’t have time to speak to me at all.

I told her that the despair that had led me to try to take my life had been caused by a variety of reasons. I am in debt as my ESA payments have been suspended pending a fraud investigation as I failed (again) to ask permission to get paid for permitted work. The ever decreasing welfare benefits I live on, the recent stressful events when applying for PIP, the face to face assessment, appealing the decision, and the enormous fear of soon having to apply for Universal Credit that I can’t even face. I told her that any loss in benefits could see me homeless once again. My Personal Budget which helps me to live in the community by employing a Personal Assistant is also due to be reviewed and I expect the budget to be reduced. The thought of having to try to detail and justify the struggles I face, to do even the most basic daily living tasks is horrendous.

I detailed the transphobia I face daily from my family and the nasty arguments I read on social media regarding transgender people. The fact that I am waiting for an appointment at the gender identity clinic and how I feel I don’t ‘fit’ into a female ward. Yet, I don’t ‘pass’ as a man and therefore would be afraid to be on a male ward. The fact that some staff and patients call me by my preferred name but use the wrong pronouns. That gender dysphoria is cripplingly distressing but that I have no support to talk about this.

I talked about the iatrogenic trauma I have endured for the last two and a half decades of being in secondary mental health services and during the many times I have been locked away. I likened it to the childhood physical, sexual and emotional abuse I was a victim of and how I can’t call myself a ‘survivor’ as I am in many ways still a victim of control, coercion, abuse, trauma and power by the very people who are supposed to be ‘helping and supporting’ me to ‘recover’.

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I stuck the Unrecovery Star I had drawn on to my bedroom door and was surprised at the ongoing interest by staff and patients. Some staff have signed it in agreement and with messages of support. The other evening some of the patients asked me to explain more about the drawing and we had an in depth and respectful discussion with all opinions being taken into account and valued.

I’m seeing the Consultant Psychiatrist tomorrow during ward round and I will be taking my drawing to show him and to try to explain the circumstances that led to the desperate act that led me once again to be sectioned. I will ask the ward manager if I can leave my Unrecovery Star on the wall of the ward when I eventually get to leave.

Yes, people like me, need the hope of recovery. However, I believe people need to know that there are many issues that stop my recovery. That I am unrecovered. Society as a whole has to take responsibility for giving me hope of recovery. As I finish writing, I’ve just looked at my drawing of the Unrecovery Star on my bedroom door and I notice two more signatures from fellow patients.

I wonder how many lives could be saved if a robust “Social Model of Madness, Distress & Confusion” was universally adopted. I wonder if my brother may have been saved.

Can you be disabled with a mental “illness”?

The idea of disability, when applied to blindness or an inability to walk, seems fairly straightforward – a simple recognition of difference. But its application to mental distress and psychological conditions seems much more vexed and controversial. This is so amongst both health professionals and the people to whom it might be applied. Why might that be?

Disability has a legal definition. In England, Wales and Scotland the Equality Act 2010 covers work, education, housing and the provision of goods or services. At least in theory, the Act protects people from being discriminated against because of certain protected characteristics such as gender, age or disability. To count as disabled you must show that your condition has a “substantial, adverse, and long-term effect on your normal day-to-day activities”. Many of us will feel we easily meet this condition.

There are several ways of looking at disability.

In the medical model, something is wrong with your “body” (and by extension, your “mind”). You have a mental “illness” or “impairment” which disables you from reaching your full potential.

In the social model, something is wrong with your society, and the arrangements it has made for you. Society is what disables you from reaching your full potential. This model does not necessarily value one kind of life over another, treats people as inherently diverse and allows for a variety of attitudes to our condition. (Although many of us are indeed in distress and desperate for a way out, others accept the way we are and do not necessarily want to be “cured” of anything!).

In the case of mental distress and “ill health” both these models are under attack from a third, neo-liberal recovery model.

For some years now, Government policy in the UK has been dominated by “Austerity”: a programme of reductions to public spending and removal of any constraints on business which interfere with making a profit. Profit is assumed to be the highest good and nobody has any “right” to payments from public funds, not even if they contributed the money via taxes and national insurance in the first place. Austerity lies behind the “Hostile Climate” experienced by the poor in general and by some groups in particular (refugees/asylum seekers, members of ethnic minorities and disabled people – above all, those whose continued existence might involve a cost on the public purse).

Neatly fitting into this context, the Recovery model firmly rejects any concept of permanent or long-term psychological impairment or difference and concentrates on finding quick, cheap fixes which get people back to work. It’s important to clarify what kind of work. Ideally full-time and paid, it certainly doesn’t mean work which provides you with enough to live on, or which is socially useful or “meaningful” in some way. The defining feature is that it must make a profit for somebody else – preferably a large employer.

In this model lack of effort (and too much help from family or society) is what disables you from reaching your full potential. Psychological disability becomes essentially a moral question, much as it was back in the days of demon-possession and sin. Although by no means all NHS mental health professionals agree with this view, most in the UK have had to deal with it one way or another. Many feel obliged to pressure people to “recover” in these terms, as rapidly as possible.

So given that the Equality Act gives disabled people rights and a protected status, why might we be reluctant to call ourselves “disabled”?

We may feel we have no right to claim the label, and feel embarrassed at the need for support it seems to imply. (It took a GP’s recognition that her condition was long-term before the writer felt she had permission to use it, for example.) This is of course nonsense in a social animal like homo sapiens whose daily survival depends on the support of others, but in a society dominated by neo-liberal ideas, “independence” can sometimes feel like a necessary condition for self-respect and dignity.

We may associate it with hopelessness, rejection, degradation and despair. Lurking just behind the shoulder of many of us (especially those aged 50+) is the nightmarish spectre of the old “hospitals” where the mentally “ill” (such as unmarried mothers, or those who had accused powerful people of abuse) the learning disabled and the physically disabled alike were incarcerated, lobotomised, electroshocked, raped, abused and/or abandoned and forgotten for ever. (Because of this, for some of us it took a significant act of courage to “come out” to the NHS as “mentally ill” in the first place.)

In the Hostile Climate, where disabled people face routine hostility, harassment and physical attack, it may be genuinely dangerous. Bullying and abuse from others often makes our psychological distress worse. It may even place us in immediate physical danger.

So why might we want to use the term “disabled”?

Many of us fit the definition in the Equality Act, and we may want to claim the legal rights it gives us. Especially if we are in paid employment, we (or our union representatives) may be able to insist that our employers make reasonable adjustments to enable us to continue working on equal terms to our workmates. (I am assured by Unison colleagues that this still can and does happen on occasion, especially in what remains of the public sector.)

It may help others take our condition seriously, and to accept that we’re in there for the duration. It may help to prevent idiocies like telling the severely depressed to cheer up, or trauma victims that there is “nothing to worry about”.

It may help us to insist on our human dignity. It may help us to make common cause with others who face different problems, but the same oppressor. It may help us to build solidarity. It may help us to take ourselves seriously. I like this quote from one of our members, ‘I am disabled due to my emotional distress, adversity, finances and society. Proud to call myself disabled!’

Rita Binns

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