‘People with learning disabilities need a commissioner and a legal charter of rights’ – no they do not!

Abstract

Since the UK Winterbourne View scandal, there have been a number of reports and responses recommending what should be done to ensure a similar scandal does not happen again. Two ideas have emerged which suggest that people with learning disabilities need a legal charter of rights and a commissioner to make a difference in their lives. This article, however, argues that although it is right that issues affecting people with learning disabilities are at the heart of discussion and debate, this does not take into account the complex, flexible and multiple identities of people with learning disabilities, and their knowledge, experiences and skills. This would be more beneficial in understanding the lives of people with the label of learning disabilities than a commissioner or a charter.

Keywords:

• Learning disabilities
• choices
• knowledges
• participation
• health

The Winterbourne View scandal – reports and responses

In February 2016 a report was published in the United Kingdom by Sir Stephen Bubb, ‘Time for Change: The Challenge Ahead’ (Bubb 2016), which criticised the UK government for not making progress in applying his recommendations from a previous report, ‘Winterbourne View – Time for Change’ (Bubb 2014). The 2014 report was commissioned by NHS England to examine how to address ‘serious shortcomings’ in the support for those with learning disabilities in the United Kingdom, in the wake of the Winterbourne View abuse scandal. Bubb (2014) made 10 recommendations in his first report, including the recommendation that there should be a legal charter of rights for people with learning disabilities and their families, which Bubb (2016) suggested, with the help of a commissioner, would help to ‘protect and promote’ the rights of people with learning disabilities. In Bubb's (2016) latest report, Bubb reiterates the need for a learning disabilities commissioner:

[the] Government should establish the role of a Learning Disabilities Commissioner with a statutory duty on the post-holder to promote, enhance, and protect the rights of people with learning disabilities and their families in England. (Bubb 2016, 6)

Additionally, Bubb (2016) suggested that the commissioner would ‘monitor and hold to account’ all services that are charged with caring for people with learning disabilities. My view, however, is that since the reports that have been published in the wake of the Winterbourne View scandal, these reports have fallen short in understanding what action needs to be taken, to really make a difference in the lives of people with learning disabilities. For example, the reports fall short in understanding the depth of the negative attitudes that affect the day-to-day lives of people with learning disabilities (Scior and Werner 2015), leading to many being victimised (Beadle-Brown et al. 2013) and many experiencing low self-esteem and feelings of helplessness (Ali et al. 2012). The marginalisation of people with learning disabilities goes back many decades, yet since the economic crash in 2008 the challenges people with learning disabilities face has intensified further. For example, negative media coverage of people with learning disabilities has increased, focusing in on welfare benefit claimants (Briant, Watson, and Philo 2013), and the identity of people with disabilities has changed from ‘deserving citizens into scroungers’ (Hughes 2015, 992). Whilst there has been an increase in inclusive education and de-institutionalisation in recent years (Quarmby 2011), negative attitudes towards people with learning disabilities continue to pose a threat to full inclusion (Sheridan and Scior 2013).

Making choices, sharing knowledge and participating in a health-promotion project

Reading the reports does not give me a sense of hope that the lives of people with learning disabilities are going to be any better with a new charter and a new commissioner (if it happens). To think about why I feel this way, I cite a previous research project I facilitated which aimed to explore the experiences of a group of men, labelled with learning disabilities, in participating in a health-promotion project (Richards 2014). The project involved 45 workshops, over the course of a year, in which the men engaged in creative and visual activities such as filming, art, poetry and sculpture, in a local museum in the North West of England. The project ended with a six-month community exhibition at the museum displaying the work of the men.

A number of key findings emerged from the data that seem to contradict the recommendations of Bubb (2016), in his recommendation for a legal charter of rights and a commissioner for people with learning disabilities, in so far that these recommendations could be a redundant idea before they are even implemented. For example, the findings from this research highlighted that people with learning disabilities (at least men in this research) have knowledge and experience to share, particularly when decisions are being made about their lives and their health. The men in this research had experienced exclusion and ignorance in their lives, including experiences of being regularly devalued, ignored and rejected. Even in this research (unintentionally), at different points, the men’s experiences and knowledges were ignored in relation to their understanding of health promotion. For example, the aim of the project was to ‘educate’ people with learning disabilities in understanding aspects of health, such as the importance of exercise, diet and cancer checks, whereas in fact the men demonstrated that they already had this knowledge and understanding. Thus, my questions are ‘who would write the legal charter of rights?’ and ‘who would be the commissioner?’ The chances are that the writer or writers of the charter, and the selected commissioner, will not be a person/people labelled with learning disabilities because people with learning disabilities are assumed to be people who do not have experience and knowledge to share. After all, choice/decision-making is restricted if a person does not have the means or power to make a choice, which is the daily situation for people with learning disabilities (Grove et al. 1999; Kennedy and Haring 1993), and therefore this subsequently excludes people with learning disabilities who want to share knowledge and make choices, and it can reduce any confidence they have to express their feelings.

Bubb’s (2016) new report also suggested that 10,000 extra members of staff were needed to support people with learning disabilities in the community, and that the extra members of staff needed to be adequately trained, which could be important. After all, the negative experiences of people with learning disabilities in the health system has resulted in people being suspicious of health providers (Drainoni 2006; Van Loon, Knibbe, and Van Hove 2005) because of instances of disrespect and ignorance. For example, Robertson et al. (2007) noted that the lack of training for facilitators, timing issues and lack of resources all may have an impact on the provision of person-centred planning, with choice being an important part of person-centredness. Thus, this would indicate that if there were fewer of these problems associated with choice, and more focus was placed on listening and sharing experiences alongside people with learning disabilities, more learning could take place on issues relating to health promotion and beyond that affect people with learning disabilities. For me, this should be the central focus, not the construction of a charter that is just words in a document, or the creation of an expensive commissioner who inevitably will be heavily influenced by a government that has ensured sharp austerity measures related to benefits/disability benefit. For example, people with learning disabilities/disabilities have faced cuts to day services and individualised support (Power, Bartlett, and Hall 2016), with people labelled with disabilities expected to lose over £9 billion in welfare support (Wood and Grant 2010).

For me, witnessing the men engage in debate and discussion in this research, and making choices, sharing knowledge and participating in health-related activities, suggested that making choices which represented their perspectives was important to the men, and is likely to be important for all people with learning disabilities. Furthermore, this also indicates that it is not the individual(s) (the men in this research) who are the problem, but instead the problems are strongly connected to the men’s contexts (Oliver 1990; Shakespeare and Watson 1997; Goodley et al. 2003). Hence, the discrimination that people with learning disabilities faces on a day-to-day basis lies in their surrounding contexts, such as with health service providers, care homes, home life, workplaces and in the community, meaning that the contexts need to change, not the individuals (people with learning disabilities). This is important because the wider context of this particular research was the ramifications of austerity and welfare cuts whilst, at the same time, it is estimated that more people will be labelled with learning disabilities in England between now and 2021 (Emerson and Hatton 2008). Consequently, the risk of health inequalities will become more widespread, particularly for people with learning disabilities as they are at greater risk of health inequalities. But by working harder to listen to the experiences and knowledges of people with learning disabilities, similar to the men in this research, who had knowledge to share about health, a better understanding for health promotion and disability may emerge, because the focus will be on the knowledges and experiences of people with learning disabilities rather than their perceived lack of knowledge and understanding of health awareness. Similarly, in all courses of life, people with learning disabilities should be making choices, sharing knowledge and participating at every level to ensure that they have control over their lives.

What do we need to consider?

Bubb (2016) recommended that people with learning disabilities need a commissioner and they need a legal charter of rights. Whilst I accept the reports are trying to put a much-needed focus on the lives and needs of people with learning disabilities, the reports do not get to the roots of the contextual problems that people with learning disabilities face. Based on the findings from this research, I feel the focus needs to be on the following:

1.	People with learning disabilities should be able to make choices about every aspect of their lives because they have the knowledge and experience to make the right choices.
2.	People with learning disabilities should have their expertise and knowledge prioritised over any government-chosen commissioner, and report authors, because they are the experts on what is needed to be done to help make the lives of people with learning disabilities better.
3.	People with learning disabilities should be able to participate at every level of decision-making and be able to take action that affects their lives.

It seems to me that the creation of charters and the employment of commissioners is just another dead end, but if we can take into account the complex, flexible and multiple identities of people with learning disabilities, and their knowledge, experiences and skills, we may come to a better understanding of what the label of learning disabilities might mean. In doing so, we may start to understand the multiple perspectives of those who are labelled in this way, which might go some way in changing the negative contexts of people with learning disabilities for the better.

Disclosure statement

No potential conflict of interest was reported by the author.

Acknowledgements

The author would like to thank Professor Rebecca Lawthom and Dr Katherine Runswick-Cole for the great support and advice they provided to the author relating to the research cited in this paper. The author would like to thank the Research Institute of Health and Social Change, Manchester Metropolitan University, for partial funding towards the research cited in this article.