ALWAYS THE RECIPIENT The indignity of being only ‘cared for’

Debate, and studies, on carers and disability overwhelmingly assume you are either a disabled person (a recipient of care) or a carer (a non-disabled person). It is cut and dried – the carer and the cared for. This flies in the face of research evidence and the reality of people’s lives. Studies actually suggest disability is extremely common amongst ‘carers’ (for instance, two thirds of the growing number of older carers have lived experience of disability or long-term health conditions); and anyway relationships are reciprocal, there is not usually one ‘carer’ and one ‘cared for’.   

'I support my partner - but I'm also a user of mental health services, so when I'm bad she supports me. We support each other' (Cited in Richmond Mind 2012[1]).

‘Both me and my husband are blind and I am in a wheelchair, but we care for each other. There is a grey area, we help each other and one of us picks up where the other has left off, but neither of us are a 'main carer' and that can confuse things where funding etc comes in.’ (Croydon Advertiser, 24 April 2012)

Sometimes the balance in relationships changes with time: for instance, parents as they age may find that their learning disabled adult child does more tasks for them.

Disabled people have resisted a world that divides people into ‘carers’ and ‘cared for’ for some time. The 2010 Joint Position Statement on Carers with Learning Disabilities puts the divide down to discrimination:

‘People with learning disabilities may still be discriminated against. Sometimes it’s hard for others to understand they can be carers too’ ….[This means learning disabled carers] ‘aren’t easy to find. We don’t know how many there are. There isn’t much information about them, so it’s hard for organisations to get money to help’ [2]  

Groups of mental health service users make similar points. The Disability Rights Commission’s Mental Health Advisory Group stated in 2007[3]:

‘Many people with mental health conditions provide informal care for others with such conditions, or older or disabled relatives and friends. Services should explicitly offer support in these roles’.   

This support is not always within a family. Some people offer each other quite intensive support amongst friends – for instance, taking turns to be with someone who is suicidal. These groupings do not ‘fit’ the standard model of ‘carer’ and ‘cared for’ and those offering the care often remain unsupported.

Ignoring disabled people’s contributions in supporting family and friends is one way (amongst many) of stripping disabled people of the dignity, the self-esteem, the status of having something to offer. Not only are you at high risk of having no job, no accumulated pension, no community roles – you also suddenly find that rather than having a daughter, friend or spouse they are seen as your ‘carer’. You become a recipient of care – not someone with something to offer. It is not a good place to be. And if you are supporting a family member or friend – if you are a ‘disabled carer’ - this is under-recognised.

Put simply, people living with disability or long-term health conditions are too often seen as having little to give: to be always and only recipients. This is demeaning and undermining.  

'I've never told my daughter I go to a carers' group. She would be horrified. I'm her mother. She doesn't think of me as a 'carer'' (Cited in Richmond Mind 2012)

Speaking personally, I have a partner with bi-polar disorder who gives me massive support, a mother with advanced dementia and physical frailty who is very much my mother, another family member with significant mental health difficulties – which led to me being invited to a ‘carers’ evening’ – and my own experience of mental health difficulties. So who exactly is the carer here? Everyone perhaps?

Of course, identifying the responsibilities and work of carers has been vital in order to recognise needs for support, rights, employment adjustments and more. But we need now a more subtle reflection of our lives, moving away from ‘carer and cared for’ – using simple language, like the ‘families, friends and carers of disabled people’, that allows for the possibility of all kinds of relationships and interactions between people.

This language also works well across different communities, different experiences.   In some black and minority ethnic (BME) communities people do not identify with the term 'carer' at all, viewing the responsibilities simply as part of family life. Some lesbian, gay and bi-sexual people talk of their friendship networks as 'families of choice' - and may offer networks of support rather than a single 'carer'. Disabled parents (and perhaps particularly those with learning disabilities or mental health conditions) may be very reluctant to see their child defined as a 'young carer': with their parenting abilities under constant scrutiny, the last thing they want is language that suggests they are no longer parenting, but rather being cared for by their child[4].

We need to understand the wonderfully diverse ways that people live and support each other. As writer Peter Ackroyd said of his partner:

 

‘Since I was his sole companion I suppose in modern parlance I was his carer – but in truth he was caring for himself. He was singing in the bath the day before he died’ (Peter Ackroyd, speaking on Desert Island Discs, May 2012).

Evidence, what evidence?

One problem is the sheer invisibility of the experience of disability in ‘carer’ literature.  Research into caring often breaks down the carer experience by ethnicity, gender or age – but not by disability. The standard factsheets on carers – for instance Carers UK’s Facts About Caring (2009) - say nothing about disabled carers. This is extraordinary given that disability is a central experience of carers – it is extremely common. Research by Carers Scotland[5] found that:

·        68% of carers had physical problems like carpal tunnel syndrome or chronic pain

·        37% had arthritis, osteo-arthritis or osteoporosis

·        34% had high blood pressure or heart problems

·        13% had respiratory problems including asthma, Chronic Obstructive Pulmonary Disorder

·        11% had neurological problems including acquired brain injury, stroke, epilepsy

·        8% had a sensory impairment – sight or hearing loss

·        45% had an ‘illness’ from depression or diabetes to hernia or fibromyalgia.

Another study found that two thirds of older carers themselves experience ill-health or disability [6]. As our whole population ages, the number of older carers is set to grow, so disabled older carers will increase as well.  

Some individuals have multiple impairments or health conditions, for instance:

‘Epileptic, asthmatic and have only sight in one eye. Back problems as have an abnormal spine (scoliosis), unable to walk for contact pain, knee and hip problems. I do all lifting and caring etc. So tired – feel like running away’.

The problem is that this evidence does not (with a few honourable exceptions) lead researchers and policy makers to look at the experiences and hopes of disabled carers – it simply leads them to look at how to prevent ill-health and impairment in carers, within an overwhelming narrative about the stresses and strains of care. This is important – but so too are the distinct support and independent living needs of disabled carers, which are largely ignored, both in research and in the day to practice of services.

The emphasis of research is on how to prevent health conditions and impairments – using a medical or clinical model of disability – not on how to enable disabled carers to have fulfilling lives, with adjustments or support as needed to carry out their chosen caring roles (using a social model of disability).

For example, the Carers Scotland report (cited above) is subtitled the ‘impact of caring on health and long-term conditions’. In passing it reveals that 58% of those surveyed were disabled before becoming carers; but the study focuses on the 42% whose condition started after caring, because it seeks to understand how bad caring is for your health.   

The report recommends measures to prevent impact on health – for instance, breaks for carers, improved information, training for all carers in lifting. 

If research like this took a social model of disability perspective we would expect to see some very different recommendations - to offer supports and adjustments to carers that are specific to their own disability-related needs. For example:

·    A carer with a fluctuating condition might need extra support when their condition is bad, to enable them to carry on caring. Or they might need occasional hospital admissions – and could benefit from a personalised service so they and their relative can have control over the services, with cover at those times

·    A carer with brain injury might need information to be written, recorded, or built into reminders in a mobile device - if they have difficulty retaining information

·    A carer with a sensory impairment might need simple adjustments, like communication by text or textphone, or in large print or braille 

·    Networks of disabled people who support each other may need  support  – for instance,  models of independent living that support reciprocal care, recovery, skills and education

·    Any of these families and friends may need recognition that sometimes they are providing care and support, sometimes their relative is providing support to them. They need a service that understands that care is reciprocal – not all one way. At best, they can control the support themselves, so it is flexible to those dynamics. They need a personalised, individual approach to support – not just prescriptions that apply to all ‘carers’, for breaks, information or training.     

 

A very few researchers have explored the contributions to family life that disabled people bring. For instance, Greenberg et al found that where people with serious mental health conditions lived with their family or friends, 50-80% of those family/friends said the person contributed by doing household chores, shopping, giving emotional support, listening to problems, providing companionship and giving news about family and friends [7].

More often it is the literature generated by disabled people (including those with long-term mental or physical health conditions) that points the way to the contributions disabled people make and the support people need to do so.  

Conclusion

Nationally, many disabled people – right across the spectrum of different impairment experiences - have objected to the idea that a key relationship - as daughter, spouse, friend, father - should be renamed as a one-way street of care, with them as the recipient[8]. This can seem to strip them of their own identity as spouse, parent, child or friend and to ignore the contributions – emotional, practical – that they make to families and friends. It can be one example among many of feeling stripped of a significant role – being viewed as ‘unable’ to work or study or parent.

We need research, policy and services that respond to the reality of relationships in families and friendship groups in the UK. That deal with all their variation, complexity, change over time  – and all their reciprocity. We need models deeply rooted in human rights – in the dignity of what we have to offer, not an endless description of disabled people’s ‘needs’ for ‘care’. We need to start with a social model of disability – that asks what disabled people supporting families and friends want so that all parties can achieve independent living. Not to constrain ourselves with narrow medical models, that only see disability as the consequence of the stresses of caring. We need, put simply, a debate led by people as we really are – not split into ‘carer’ and ‘cared for’, but living varied, complex, interesting and mutually supportive lives.

Liz Sayce, Chief Executive - Disability Rights UK 

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[1] Richmond Mind (2012) Caring with a Difference: forthcoming

[2] Princess Royal Trust for Carers, Crossroads Care, Mencap, National Family Carer Network, Who Cares for Us? and Respond (2010) Joint Position Statement on Carers with Learning Disabilities

[3] Disability Rights Commission Mental Health Advisory Group (2007) Coming Together: Mental health equality and human rights

[4] See for example Morris J (1996) Encounters with strangers: feminism and disability. Women’s Press

[5] Carers Scotland (2011) Sick, Tired and Caring. The impact of unpaid caring on health and long-term conditions

[6] Princess Royal Trust for Carers (2011) Always on Call, Always Concerned. A Survey of the Experiences of Older Carers. At http://www.vocal.org.uk/assets/files/downloads/always_on_call_always_concerned.pdf

[7] Greenberg JS, Greenley JR and Benedict P (1994) Contributions of  Persons with Serious Mental Illness to their Families. Hospital and Community Psychiatry 45, 5: 474-80

[8] See Sayce (2000) From Psychiatric Patient to Citizen; Repper and Perkins (2006) Social Inclusion and Recovery