Segregation, inclusion and citizenship

Segregation, inclusion and citizenship

Article Type: Editorial From: Mental Health and Social Inclusion, Volume 18, Issue 2

The range of papers received by Mental Health and Social Inclusion raises issues about the role in promoting inclusion and citizenship of sheltered/segregated environments and services where people can learn, work and spend their leisure time. Debates around the value of, for example, day services and sheltered workshops/work training have intensified as cuts in public spending have led to the closure of many such facilities.

On the one hand, those who use such facilities (frequently older people with a long history of using mental health services) value them greatly, often as much as a source of social support as for the specific activities they offer, and fear the isolation and exclusion that may result if they were not available. Some people have found them a useful respite allowing the person to regroup and build confidence in order to move on to other, more integrated, opportunities. However, evidence suggests that, more often, they do not act as a springboard to wider participation in mainstream social, economic and cultural opportunities[1]. Too often people remain in such segregated environments for long periods of time if not indefinitely, or, if there are limits on duration of attendance, leave with nothing to replace the important role they played in the person's life. This does not deny their value in preventing isolation, but it may lead us to question their role in promoting social inclusion and citizenship.

On the other hand, there are others (ourselves included) who tend to the view that segregated work and day facilities actively promote exclusion and limit opportunity. By dividing “them” from “us” the role of “mental patient” may be reinforced, and fears in both in both users and providers that the person cannot cope outside a safe, sheltered environment entrenched. The range of opportunities that exist within segregated services can never replicate the huge diversity of possibilities that exist in a wider society. Segregated services also prevent the contact that is necessary to break down prejudice thus perpetuating myths and stereotypes about the possibilities for people diagnosed with mental health conditions. Thus the existence of such facilities conspires to deny people the rights to equal participation and equal citizenship to which they are entitled within the United Nations Declaration on the Rights of Persons with Disabilities (UNCRPD).

In an era of cuts in public spending, it may be convenient to assume that it is sheltered/segregated environments that have deskilled people, and that, with some initial training and support combined with appropriate treatment, people can avail themselves of mainstream opportunities unaided. We would argue that this is likely to be a mistake. Many mental health challenges fluctuate and others are ever present so, like physical health challenges and impairments, some people may require access to support and adjustments indefinitely if they are to participate fully and actively in community life. It seems ludicrous to suggest that, after a period of time, the wheel chair or personal assistant of someone with a physical impairment should be withdrawn on the assumption they should now be able to participate unaided. Surely, it is equally ludicrous to assume that the support and adjustments needed to ensure participation can be withdrawn from someone with fluctuating or ever present mental health challenges? The issue is not one of “preparation for” community life but “support in” community life.

In the words of the UK Disability Rights Commission (2002):

All disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. This does not necessarily mean disabled people “doing everything for themselves”, but it does mean that any practical assistance people need should be based on their own choices and aspirations.

The challenge is not to defend day centres, sheltered workshops and other forms of segregated provision against the onslaughts of the recession, but rather to look at how we can better provide support and adjustments (in line with our choices and aspirations) to ensure full and equal participation and citizenship. Hopefully the pages of Mental Health and Social Inclusion offer a forum where we can do this.

But maybe the situation is more complex than one of simply integration or segregation.

First, there is a wealth of evidence testifying to the value of peer support in enabling people to participate in communities, indeed most of us include amongst our networks people with whom we have shared significant life experiences. But are segregated facilities provided by professionals the best way of achieving this? If the real value of traditional day services has been social contact, why do we need professionals to provide this? Might communities of peers and other organisations run by and for those who use them may offer real and better alternatives? Genuinely democratic, collective, peer run alternatives have a history stretching back decades in some parts of the world, for example, the ground-breaking Ruby Rogers Center in the USA[2]. While some similar initiatives exist in the UK, progress has tended to be slow: there seems to be a reluctance to hand over the money or the keys, and extensive rules, regulations and contractual requirements that inhibit alternative forms of organisation. Possibly as a consequence of this, some peer services have become indistinguishable from the more traditional services they sought to replace. As Mary O’Hagan (2014) describes, some now replicate the “them” and “us” barriers and hierarchical structures of traditional services that serve to divide peers providing the service from peers using the service.

Second, although they present many challenges, personal health and social care budgets offer very real opportunities to change the balance of power, look beyond “service-land” and genuinely tailor support to individual preferences and aspirations (Glendinning et al., 2008; Forder et al., 2012). In theory, people can pool their budgets which could provide the resources necessary to bring together collectives of peers with similar interests and concerns. In practice, maybe because of the numerous bureaucratic barriers and widespread lack of information about possibilities, these opportunities have hitherto rarely been exploited. How can we make it possible for people to meet others who may share similar interests/concerns/culture to enable such collective possibilities to emerge?

Finally, we must not overlook those people facing mental health challenges for whom integration is not an option: those, for example, in High Secure and Medium Secure Hospitals and Prison Mental Health Units. Although they constitute only a small proportion of those facing mental health challenges, in thinking about creating inclusive communities that can accommodate all of us, their needs cannot be ignored. How can we think about “social inclusion” for those who are compelled by law to live work and learn in secure, segregated environments? Obviously, people within such facilities have the opportunity to think about different options and develop skills, interests and competencies in preparation for moving on to life in the wider community. However, some people will spend many years and decades in such segregated communities, and for a small minority it may be home for the rest of their days. Perhaps we must also think about social inclusion in the community of which they are a part – the creation of valued and contributing roles within the institution – as well as preparation for life outside its walls.

In Mental Health and Social Exclusion we would like to explore different and innovative ways of enabling everyone who experiences mental health challenges to participate in their communities as full and equal citizens, including those who are, as a consequence of offences they have committed live for periods of their lives in segregated communities.

Rachel Perkins and Julie Repper

Notes

1.See, for example, Social Exclusion Unit (2004) and Sainsbury Centre for Mental Health (2009).

2.Ruby Rogers Center, available at: http://baycove.org/BCexternal/index.cfm?objectid=9B528FA4-7009-11DF-B090000423B5542E

References

Disability Rights Commission (2002), Policy Statement on Social Care and Independent Living, Disability Rights Commission, London

Forder, J., Jones, K., Glendinning, C., Caiels, J., Welch, E., Baxter, K., Davidson, J., Windle, K., Irvine, A., King, D. and Dolan, P. (2012), “Evaluation of the personal health budget pilot programme”, Department of Health and PSSRU, available at: www.pssru.ac.uk (accessed 12 December 2012)

Glendinning, C., Challis, D., Fernández, J.-L., Jacobs, S., Jones, K., Knapp, M., Manthorpe, J., Moran, N., Netten, A., Stevens, M. and Wilberforce, M. (2008), Evaluation of the Individual Budgets Pilot Programme Final Report, Individual Budgets Evaluation Network, Social Policy Research Unit, York, available at: www.york.ac.uk/spru (accessed 6 January 2014)

O'Hagan, M. (2014), Madness Made Me, Open Box, Wellington

Sainsbury Centre for Mental Health (2009), Doing What Works: Individual Placement and Support into Employment, SCMH, London

Social Exclusion Unit (2004), Mental Health and Social Exclusion, Office of the Deputy Prime Minister, London