By Asna Wajid
This blog was written by Asna Wajid a student research assistant and undergraduate student in the department of Politics and International Studies, University of Warwick. The blog reflects on a key issue that interested Asna when she started to explore some of the challenges facing BAME groups in the UK in accessing social care. These are issues that we are seeking to explore further through our current programme of work looking at how BAME groups are impacted by Britain’s highly gendered social care crisis.
As highlighted in the work of the PSA Commission on Care, BAME people affected by poor health are, on average, disproportionately accounted for within the current social care system. Nonetheless, a 2015 Race Equality Foundation Paper by John Owuor and Jane Nake brings to light the persistence of social stigmas around accessing non-familial care within BAME communities and suggest that this serves as a significant barrier to accessing care. The PSA Commission on care report reflected on evidence gathered from organisations working with BAME groups, noting the cultural and social stigma that exists around conditions such as dementia within some communities (see report, p. 16 and workshop report). Here I consider the broader social stigmas surrounding accessing formal care outside of the family, for communities in which there are widespread assumptions that families ‘look after their own’. What happens when that family support is not available, or families are unable to cope with the complex needs of older relatives?
In this blog therefore, I look at why it is important to recognise stigmatisation in the context of social care, which enables a more comprehensive understanding of the problems and challenges facing BAME older people.
Defining stigma in the context of social care
Stigma can be defined as a socially and culturally embedded process involving labelling and stereotyping which leads individuals to experience discrimination (see for example how the concept of ‘stigma’ is employed by health researchers Young et al. 2013). Owuon and Nake add to this definition by using the term ‘internalised stigma’, a term that seeks to capture how ethnic minority groups come to perceive themselves as social outsiders in the UK. In the health policy realm, the perception of outsider status is also a consequence of negative media coverage that has often branded many BAME people seeking to access health and social care ‘benefits scroungers’ or ‘health tourists’. This results in a vicious cycle whereby such stigmatisation leads to the shunning of social care services among ethnic minorities for fear of being further ostracised by the system. Enduring forms of stigmatisation both against and within BAME communities mean that there needs to be a much more concerted effort to ensure that BAME older people and their families in communities are properly and appropriately supported to access formal social care.
It is worth recognising the multifaceted nature of stigmatisation; the gendered caregiver burden in South Asian families builds on deep-rooted cultural expectations of family taking care of older people, and this often leads to elders resisting engaging with social care services as they are unfamiliar, and indeed uncomfortable, with the idea of professional carers (strangers) coming into the home to assist them (Nijjar, 2012). It is likely therefore that more research needs to be done in this area to address the needs of BAME elders and their carers. This is not an easy task; because of the familial expectations noted above, there is often a reluctance among older people to speak about their experiences with social care. It is not surprising, therefore, that many BAME people may actively avoid seeking out help for social care in times of necessity. This makes stigmatisation a phenomenon that should be recognised and tackled.
Take for example, a recent news article looking at the very low numbers of South Asian families accessing support for palliative (end of life) care in Wolverhampton, family members reflect on why they were slow to access formal care services and seek to challenge the stigma surrounding going outside of the family. As one interviewee commented ‘In the South Asian community the concept of an elderly person going into a care home is a slap in the face’. But as another interviewee acknowledged ‘there’s no need for shame because you can’t do everything single handed’; things may be changing as family mobility and gendered norms shift within communities.
The political importance of stigma in social care
Social care has been articulated in the agendas of political parties, as can be observed in the 2019 General Election. As an escalating financial crisis loomed over the social care sector, all political parties sought to make manifesto commitments to increasing social care spending. Much state funded social care provision is provided via local governments, and the spiralling cost of social care spending has proven catastrophic to many local councils who have seen their central government funding dramatically reduced under austerity. Whilst politicians have consistently kicked the issue of social care funding into the long grass, or have placed it in the ‘too difficult’ basket, the numbers receiving social care have fallen, even though need for care is rising.
In the context of such a care crisis, several politicians have made remarks suggesting that families ought to take greater responsibility for the care of older family members. This serves to guilt trip people “into doing more unpaid work rather than funding social care adequately and lets off the government from addressing the social care crisis”. In the light of Boris Johnson’s recent statements that a solution to the care crisis could take up to five years, it will certainly remain the case that families and unpaid carers (who are disproportionately women) will continue to take on the ever increasing burdens associated with the current social care crisis. For families and communities in which cultural stigmas exist around accessing care, it is invariably the case that the very real and practical difficulties in accessing care will do little to reduce the burden of care for BAME women in particular. Thus the issues raised in this blog also speak to ongoing, and politically important, research concerning the impact of austerity on BAME women.
What does this mean for care of the BAME community?
This brings us to the question of what can be done about the current issue of stigma and how it functions within the realm of social care. It is clear that more attention should be paid to the stigma that exists within and around the social care system. By acknowledging that this exists, it may be possible to challenge the negative connotations surrounding social care which would be beneficial to those who feel they cannot turn to it as well as applying pressure to the government for adequate and effective social care provision.
It is important also that the needs and interests of BAME populations are not simply ignored in the development of longer-term plans to fix social care funding and the care crisis more broadly. In an earlier blog that I co-authored, the decision of the Labour Party to make specific manifesto pledges surrounding the need to better address the needs and interests of BAME populations was seen as an important set of proposals that could be drawn upon in the development of long term solutions to social care funding and provision. However, now that it appears that the Conservative Party will no longer follow its manifesto pledge to seek a cross party approach to tackling social care it seems unlikely that issues of racial inequality (or indeed gender inequality) will be on the table when it comes to getting social care ‘done’.