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’.
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’.
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.
Open Letter to some of those attending the Global Disability Summit
Lenin Moreno, President of Ecuador
Gabriela Michetti, Vice President of Argentina
20 July 2018
We are writing this open letter to you on behalf of Deaf and Disabled people across the UK concerning your involvement in the global disability summit being co-hosted by the UK government in London on 23 and 24 July.
We are strongly in favour of international support that improves the lives of Deaf and Disabled people across the world and welcome co-operation between States that lead to stronger human rights laws and protections. We particularly support the building of international solidarity and links directly between Deaf and Disabled People, our organisations and campaigns.
However, we have the following concerns regarding the July summit:
The role of the UK government in co-hosting the event. Following an unprecedented investigation carried out by the UN disability committee under the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), the UK was found responsible for grave and systematic violations of Disabled people’s rights due to welfare reform. The findings of their investigation, published in November 2016, were and continue to be entirely dismissed by the UK government. In August 2017 the UK government was routinely examined under the UN CRPD and again the UN disability committee expressed their deep concerns regarding the UK government’s failure to understand the Convention, the impact of their policies and failure to recognise them. Again the UK government said they disagreed with the findings of the Committee. The involvement of the UK government in co-hosting the summit therefore undermines any aims of the summit linked to strengthening Deaf and Disabled people’s rights under the UN CRPD. Instead it provides a platform for them to showcase to other States how it is possible to get away with ignoring those rights when it comes to your own citizens.
The UK government’s use of its international work to cynically deflect from criticisms of their disability record in the UK. On a number of occasions when government ministers have been criticised for implementing policies with an adverse impact on Deaf and Disabled people, they have cited the poorer conditions of Disabled people in other countries. This represents a misunderstanding of the UN CRPD which is about the progressive realisation of rights. The UN disability committee have such concern about the situation in the UK because it represents a serious and dramatic retrogression of rights, described by the Chair as a ‘human catastrophe’. In deflecting attention from their record in the UK, the Government clearly intend to more easily continue their punitive policies targeted at Disabled people and the poorest members of society. There is now overwhelming evidence, evidence which the UN disability committee considered, that prove the brutal impacts of these policies. It would be a betrayal to all those suffering under them not to raise concerns about attempts such as use of the global summit to divert attention and opposition to those policies.
The suitability of the Government of Kenya as co-hosts given their abuse of the rights of LGBTQI+ people, many of whom develop lifelong impairments as a result. LGBTQI+ people in Kenya are routinely banished from their families, denied work and accommodation, imprisoned and persecuted. They face severe barriers to forming and maintaining relationships and to living as a couple, the ‘Right to Family Life’ that every human is promised. This results in widespread damage to their mental and physical health, creating impairments where none previously existed. This is reflected in the high level of asylum applications to the UK from LGBTQI+ asylum seekers from African countries.
Despite their experiences, the majority are then refused asylum in the UK and forcibly returned home, where many disappear or are murdered. Just this April, President Kenyatta said that LGBT rights are “not acceptable” and not “an issue of human rights”. The Kenyan Government has also claimed this is a non-issue for Kenyans, and no doubt would argue that it has nothing to do with the Summit. However, if you are Kenyan or Ugandan and are lesbian, gay, bisexual, trans, queer or intersex, it is an issue that completely dominates and dictates your life. For many Disabled people from Kenya, it is the reason they developed an impairment in the first place. Under the UN CRPD, the Kenyan government also has an obligation to protect the rights of disabled people who are LGBTQI+.
We appreciate that you may not have had this information when you agreed to involvement in the summit and would be happy to meet to discuss our concerns. Please do not hesitate to contact us with any questions or for further information.
Disabled People Against Cuts dpac.uk.net
Sisters of Frida sisofrida.org
Alliance for Inclusive Education allfie.org.uk
Inclusion London inclusionlondon.org.uk
Mental Health Resistance Network mentalhealthresistance.org
Reclaiming Our Futures Alliance rofa.org.uk
Recovery in the Bin recoveryinthebin.org
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!’
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