From service user to citizen – where to next for people with learning disabilities? Alex McClimens and Darren Lee investigate:
To begin, here’s a quick quiz. What links the following cities: Havana, 1959; Paris, 1789; Saigon, 1975; Prague, 1968? They were all sites of revolutionary uprisings where the incumbent leadership was overthrown by a mix of military and people power. Such things don’t just happen in foreign countries as we in the UK too have had our share of revolutionary unrest, although this happened a long time ago.
The thread that links these acts of rebellion was that the majority of the population felt that their political leaders were ignoring the rights of the ordinary citizen. In established Western democracies this situation is now managed by the electoral system that gives citizens the right to vote political parties in or out of government.
Hence Wales, Northern Ireland, Scotland and Cornwall are all engaged in differing levels of negotiation over who should have political control over that particular geographical area. But what options exist for those groups of citizens who make no claims to have their regional and territorial integrity recognised, being relatively content with that allegiance, but who instead feel that their social identity is unfairly compromised within the ruling political system? Over time numerous groups have felt that their aspirations have been neglected by central government.
This sense of disenfranchisement was seriously challenged by Emmeline Pankhurst who founded the Women’s Franchise League in 1889. The Suffragettes, as they were known, took direct action to achieve their political goals. Their motto ‘deeds not words’ was most famously enacted by Emily Davison who ran onto the racecourse at Epsom during the 1913 Derby.
At Tattenham Corner, where the horses are preparing to enter the final straight, she collided with the horse Anmer. The horse was brought down but got up again and ran on. The jockey, Herbert Jones, was knocked unconscious but recovered. Davison died of her injuries two days later and the movement had its biggest martyr. It can be suggested that people with learning disabilities today face similar struggles for recognition that were faced by women more than a century ago.
But racehorses aside, how might we begin to achieve some of the social and political goals that would secure that sort of recognition for people with learning disabilities?
Now here’s the science part. Minority groups and individuals – think black and minority ethnic populations or lesbian, gay, bisexual and trans people – have undergone a process of ‘othering’ by which the dominant cultural processes in operation within any given organisation or society have constructed a segregated perspective summarised as ‘us and them’ (Johnson et al, 2004).
'Othering’ can be described as a psycho-social process that isolates those individuals who, by their behaviours, practices or beliefs, appear ‘different’ from the majority. To look at this positively, ‘othering’ may simply be a reflection of diversity. But it can also act to establish an unequal relationship between ‘us’ and ‘them’ which is characterised by dominance on the part of the majority and subordination of the minority.
This can then lead to oppression and discrimination where the ‘norm’ becomes codifed and any deviation from this attracts negative social comment. This can range from casual verbal bullying on a personal level to legislative sanction whereby racist chants at a football match, for example, can lead to arrest.
In the past this was evident in arrangements like the Pass Laws in South Africa, which maintained the operation of apartheid by segregating the population according to their racial background. This was mirrored in the southern United States where the ‘Jim Crow’ laws discriminated against black people until the mid-1960s. Homosexuality is still illegal in some countries.
Some people from various minority groups continue to live with levels of discrimination. We need only think of unequal gender-based pay arrangements, harassment at work and current party political divisions on immigration and access to healthcare and benefits to appreciate that despite the best efforts of the Equality Act (2010) discrimination is alive and well in the UK.
And it is within the socio-political arena of health and social care that discrimination most seriously affects the lives of people with learning disabilities. Here, the boundaries between ‘us’ (nurses and doctors with ranks and uniforms) and ‘them’ (patients) might be argued to be necessary to maintain order in the dispensation of care, treatment and services.
Healthcare discrimination But what happens when the people dispensing the care, treatment and services act in a way that places less value on the lives of some patients but not on others?
For example, people with learning disabilities die unnecessarily, as Mencap’s Death by Indifference (2007) and 74 Lives and Counting (2012) reports detailed. When Mencap revealed the extent of discrimination in health and social care settings there was a response from the government.
Healthcare for All (Department of Health, 2008) seemed to have grasped some important issues. It called for the setting up of the Public Health Observatory, input to adult nursing curricula from people with learning disabilities and their carers and a confidential inquiry into premature deaths. The inquiry was carried out by staff at the Norah Fry Centre in Bristol.
It demonstrated that people with learning disabilities are routinely dying prematurely and that this is, in many cases, avoidable. The report concludes that: “The most common reasons for deaths being assessed as premature were: delays or problems with diagnosis or treatment; and problems with identifying needs and providing appropriate care in response to changing needs” (2014:3).
This, it can be suggested, points to an even more worrying trend and one that returns us to some old arguments about the basic premise of what it means to be human. Just as some regional populations were subjugated by indifferent authorities, and women’s rights were ignored by patriarchal societies and people of colour were globally disenfranchised by the economics of colonisation so too are people with learning disabilities being diminished by the services that ought to preserve their health and wellbeing.
In the UK we are – depending on which newspaper you read – currently emerging from or slipping deeper into what is euphemistically called a period of ‘austerity’. Leaving aside the catastrophic consequences of fiscal mis-management and the apparent reluctance of world leaders to admit that their policies may have contributed to this crisis, what is undeniable is that the least able in society have been handed the largest part of the bill (Duffy, 2013).
The cuts to social services and the reorganisation of healthcare will inevitably mean poorer quality of life for many. Zoe Williams, writing in The Guardian in 2013, did some sums.
“Disabled people with the greatest needs make up two per cent of the population, and yet they are weathering 15% of the cuts. By 2015, the combination of measures targeting this group will amount to losing more than £8,000 each a year.”
We started off with a list of places and dates. Now it’s your turn to add to that list. We don’t advocate storming the barricades or disrupting horse races but we do encourage people to exercise their civic rights. So when the election rolls round next year get out there and use that power.
Add to the list: Your town, 2015.
Duffy S (2013) A Fair Society – or how the cuts target disabled people. Sheffield: The Centre for Welfare Reform.
Heslop P, Blair P, Fleming P, Hoghton M, Marriott A & Russ L (2014) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD). Bristol: Norah Fry Research Centre.
Johnson JL, Bottorff JL, Browne AJ, Grewal S, Hilton A & Clarke H (2004) Othering experiences in health care. Health Communication 16 253–271.
Mencap (2007) Death by Indifference. London: Mencap.
Mencap (2012) Death by Indifference: 74 deaths and counting. A progress report 5 years on. London: Mencap.
Michael J (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Department of Health.
Williams Z (2003) ‘If we can’t afford for for people to be disabled, what’s the plan?’ The Guardian 13th March 2013. Available at: www.guardian.co.uk/commentisfree/2013/mar/13/whats-the-plan-for-disabled-people