By Mark Brown

Part 2

If personalised and ongoing care makes so much sense for chronic conditions, what’s the problem with mental health being seen the same way? Why are those asking for it seen as being at odds with what’s considered ‘best’ for them? What makes it so hard to accept that severe mental ill-health or distress can be an ongoing experience that requires ongoing care and support?

When people think about long-term care and support for the kinds of mental health difficulties that don't go away, they are mainly thinking about the kind of support that might fall under social care. This is less about treatment and more about ongoing support: both to address ongoing needs that don't go away, and to find ways to work around them or through them. This is mainly informed, whether people realise it or not, by thinking similar to the social model of disability.

The social model of disability rests in part on a Marxist analysis of capitalist society, which holds that because disabled people have been seen as contributing no labour, they are seen as a surplus of needs to be managed, and not as contributors. Society being arranged around money and labour, disabled people have been excluded: from the means of making money and through the structuring of society around the needs of those contributing, but also from the means to find ways of supporting themselves. The social model of disability rests on the idea that societies have a duty to all of their citizens, not just those who are economically active.

The social model of disability grew from a desire to escape from institutionalisation and limited opportunities. Without personalised support, care and adjustment backed up by law and taxation, the logic of ‘care’ for Disabled people was one of maintenance and cost minimisation.

To be Disabled, politically, is to be excluded from the rights and entitlements others take for granted because you are different from others. The answer is that society has a duty to remove as many of the barriers to Disabled people as possible so that they can take up all of the social goods and civic responsibilities that others would expect. In practice this means the provision of care, adjustment and support that, as much as possible, level the playing field. In this understanding, care and support are provided not as a benevolent act of charity but as a fundamental recognition of rights. It’s hard to extricate the idea of the rights of Disabled people from the notion of a State being able to provide or to intervene in the ways that social and economic processes happen, especially where the idea of adaptation and adjustment of existing circumstances is required. Someone must pay somewhere for the support, care and adjustment that disabled people require to benefit from the opportunities and rights others take for granted.

The wider world of mental health has not always been on great terms with the social model of Disability, leading to conflict around whether long-term mental health difficulty is truly comparable to physical or intellectual disability. The Equalities Act 2010 which rolled together a number of previous equalities laws states that:

“A person (P) has a disability if—

(a) P has a physical or mental impairment, and

(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities”

It also defines discrimination arising from disability as:

“A person (A) discriminates against a disabled person (B) if—

(a) A treats B unfavourably because of something arising in consequence of B’s disability, and

(b) A cannot show that the treatment is a proportionate means of achieving a legitimate aim.”

UK law is currently aligned with EU law, which itself is still struggling to produce a clear and unambiguous definition of Disability, leaning toward Disability being recognised by its effects rather than its causes but still relying upon case law rather than watertight definitions. One such can of worms was opened in 2014 when a European Court of Justice ruling suggested that the work limitations experienced by an obese man who worked as a childminder should be covered by disability legislation. When looked at dispassionately, this should be an obvious case. However, questions about culture, self-responsibility, the example it set and whether it was ‘right’ to endorse obesity made the case a focus of fervent debate. Making changes would be ‘too expensive’. It would send the ‘wrong message’. It would make a mockery of those with disabilities who were ‘born with them’. Through their own actions people could choose to ‘make themselves disabled’. For some this was seen as an affront to ‘honest British common sense’ and an example of EU ridiculousness in line with straight bananas. In many ways the idea of long-term mental health difficulty as disability requiring long-term care falls into a similar pattern of kneejerk, gut feeling responses.

People with long-term severe mental health needs are not missing out on what they need to lead their lives because nothing is happening. Something is happening. There isn’t a void, there’s a mismatch. Mental health treatment and support is being provided; it just isn’t being provided to enough people in a way that recognises mental distress and mental ill-health as a chronic condition or disability. 

Long term mental health need has always been viewed with suspicion. We like neat categories. Long term mental health need, in common with other invisible or variable disabilities, confuses our desire to be able to make definitive judgements. Long term mental health need is not consistent. It fluctuates over time. Sometimes it is more disabling than others. Sometimes, with the right support or treatment in place or in the right conditions or situations it is not disabling at all. Long term mental health need may not be apparent to others; especially where people avoid circumstances and situations where their mental health difficulties are most obvious or most likely to be seen.

Historically in mental health there has been a competency paradox: have insight and competency in managing your particular problems and you will be seen as not being in need of help and support. Lack such skill and experience in knowing yourself and what ails you and you will not be considered competent to express your preference. Make demands for what you need, on the basis you know yourself best, and you might be unlucky enough to find yourself perceived as someone who is just about coping. And just about coping is seen as stability, and stability is seen as re-admittance to the world of people who do not require ongoing care.

Further than this is the idea, contrary to a social model of Disability view, that to rely upon others for support would somehow take away individual agency and make people unable to ‘look after themselves’. If we just gave people with long-term needs what they want, the argument goes, then they would never learn how to do things for themselves. Within a social model of disability, the claiming of resources and the political admission that needing them is not a personal failing means that the demand for resources is key. Empowerment is advocating for and claiming those resources because your needs are different to others but your entitlement to life is the same. In long-term mental health the inverse is true: the logic we have arrived at suggests empowerment is found in needing the least amount of support and resources. Literally, once you have found your empowerment, you will not need assistance. Change is a matter of personal motivation and encouragement, not of control over resources. 

The idea that empowerment might be a benevolent gift results from the idea that being in the position of marginalisation or being on the receiving end of inequalities is a psychological state rather than a material one. Lack of access to resources is a cumulative experience: the longer that lack persists, the greater the effect on your life. Not having food enough for one day feels awful; but never having enough food eventually leads to death. The experience of missing opportunities for education or for building a safe home life aren't just felt through a snapshot comparison with others at any given point across your life. The effect of past inequalities are felt as a growing deviation in opportunities and personal competencies that piles one loss upon another upon another. Inequality is the systemic failure to distribute any form of resource or social good in ways where the outcome is equal between all.

Empowerment in mental health often mashes up the idea of self-determination; where people have power over their own lives; with self-reliance; where people draw upon their own skills and abilities. The spectre that hangs over the idea of empowerment is, in this cosmology, its evil twin: dependency. In this view, an empowered individual or community does not rely upon others to do things for them. Give a man a fish, the worn-out slogan goes, and he will eat for a day; teach a man to fish and he will eat forever. Recovery in mental health is seen as synonymous with competency and competency is a learned quality; not a functional one.

When we tell a community that ‘it’s not what’s wrong; it’s what’s strong’ without acknowledging inequality it can feel like what is being said is ‘what are you going to do to sort your own problems out?’ The measure of empowerment in this view is not the degree of command over resources that an individual or community has, but the lack of reliance on the resources of others. Considering power is the literal extent to which it is possible to command or induce others to do things, it is odd that empowerment for those regarded to be marginalised, as many who live with long-term distress and mental ill-health are, should be so at odds. No one suggests that a Prime Minister is dependent because they don't put the bins out themselves, or don't rig up their own telephone lines or plan their own travel. When we are talking about men and fishes we could equally argue: rich men never catch their own fish and get to decide to have something other than fish for dinner.

When we tell a community that ‘it’s not what’s wrong; it’s what’s strong’ without acknowledging inequality it can feel like what is being said is ‘what are you going to do to sort your own problems out?’

Rich, privileged communities might look like ‘they stand on their own two feet’, but that’s easy to do when you have the power to demand and receive everything you need. For people with long-term mental health needs, it’s only a mixture of large and small, political and practical, professional and personal, that will get us where we want or need to be.

Recovery in mental health was once the rallying cry for mental health activists but is viewed by some with suspicion. To be ‘recovered’ in the understanding of activist groups like Recovery in the Bin is to no longer be entitled to support; even when it was support in the first place that made living a viable life possible.

Part 4