Citation
Lee Hodgkins, S. (2012), "There’s a bolt missing": Considering the lived experience of Black Minority and Ethnic (BME) Disabled People", Ethnicity and Inequalities in Health and Social Care, Vol. 5 No. 2. https://doi.org/10.1108/eihsc.2012.54505baa.001
Publisher
:Emerald Group Publishing Limited
Copyright © 2012, Emerald Group Publishing Limited
"There’s a bolt missing": Considering the lived experience of Black Minority and Ethnic (BME) Disabled People
Article Type: Guest editorial From: Ethnicity and Inequalities in Health and Social Care, Volume 5, Issue 2
This special edition of Ethnicity and Inequalities in Health and Social Care journal includes a celebration of the late Nasa Begum (1963-2011) who made a significant contribution as both a researcher and activist to inclusion and equality issues for black, minority and ethic (BME) disabled people[1]. Nasa’s work focused on the inclusion of black disabled people’s perspectives in both the disabled people’s movement and in health and social care services. As a disabled person from a BME community who used services, the legacy of Nasa’s work highlights the value and necessity of “insiders”, those that have a direct experience of equality issues, and demonstrate leadership by articulating inclusive futures. While the insider or emancipatory approach (Letherby, 2006) to research challenges traditional academia and its numeric methodologies, its role within an changing health and social care policy environment that emphasises user-led, integrated and community-based resources is clearly key to successful services and better life outcomes.
Through this celebration of Nasa, we also acknowledge the hard work and important contributions made by BME disabled people and their allies to research, consultation and community development. These include the contributions of researcher activists such as Nasa and Angela Smith (who has contributed to this issue) whose lived experience articulates and reveals a range of exclusionary practises, but also those such as David (Rocky) Bennett[2] who force inquiry and reform through tragic circumstance, by way of instutionalised discrimination. Such discrimination, while relating in part to racism, and also to disablism is neither one nor the other exclusively, but rather the combined consequence of both aspects expressing themselves in relation to a dominant narrative of acceptability. Even though BME disabled people can be powerful, but in an homogenous context that rejects them, their lived experience is subject to a multiplicity of disempowerment. As these consequences can be fatal, we are reminded of the need, and indeed call for BME disabled people and their allies to build community and assert leadership that ensures their voices are expressed and heard within politics, research and practice. While the current lack of political capital contributes to the ongoing disempowerment of BME disabled people, this need not be the case for the future where collectively we can reposition the negative assumptions and actions that oppress BME disabled people to that which celebrates them.
Recent research carried out by Equalities National Council and Scope suggests that in the UK there are over 1 million disabled people from BME communities (ENC and Scope, 2012). Many of these live in poverty, face considerable discrimination in their daily lives and report poor experiences of state and voluntary services. BME services have little knowledge of disability and disability services often seem to deal with BME issues as something extra to the norm. Communication barriers are widespread and while translation is sometimes available, many report difficulties with bureaucratic processes and terms. Disabled asylum seekers and migrants experience particular issues accessing services and social isolation is also reported as high, particularly for women, migrants and carers. Disability is often stigmatised within communities, in turn contributing to low take up of resources by disabled individuals and families who would otherwise be entitled to support. This is also reflected in consultation and policy development where BME disabled people are often not included or given the means to participate. The research suggests that developing person-centred, local, and flexible services would be more valuable and accessible for BME disabled people (ENC and Scope, 2012). Elsewhere work highlights the importance of disabled person peer support that is inclusive of BME disabled people to support better access to services (Disability Equality North West (DENW), 2011). Considering this, the need to focus on BME disabled peoples’ issues can be seen as a priority.
This edition of the journal presents a number of diverse articles from around the globe that highlight and explore the lived experience of BME disabled people and make useful recommendations for inclusion and improved practice in policy and services. This begins with “The contribution of Nasa Begum to the disabled people’s movement and social care field” by Michael Turner. This indeed is a celebration of Nasa and her work that both improved user voice and participation and took BME and feminist issues to the white male led disabled people’s movement of the 1980s and 1990s.
This is followed by “Faulty Genes: Consanguinity in the Pakistani Community” by Nasreen Ali, Carl Mclean and Hamid Rehman that explores the challenging and misunderstood issue of “cousin” marriage and health. This suggests a need for culturally literate and sensitive health care professionals to be able to address populist sentiments which stigmatise cousin marriages. In “The Intersectional Invisibility of Race and Disability Status” by Ethan H. Mereish, Asian Americans are shown to experience high levels discrimination and poor health, and highlight the experience of combined inequalities associated with intersectional identities. These findings suggest the need for better understanding by practitioners of the combined impact of multiple forces of oppression that BME disabled people face.
John A. Bourke, Deborah L Snell and K. Anne Sinnott then present “Facilitating participation of end-users in research: the development of a consultation model”. This details the development of an end-user research consultation committee and demonstrates that the integrity and relevance of clinical research is enhanced by the involvement of disabled people who use services in all aspects of the research process. The final word is given to Angela Smith who discusses the “Hierarchy of impairment” and gives a personal commentary of her experiences and observations, as a black disabled woman who uses health and social care services.
For this edition we have purposely positioned a range of work, in a range of styles that highlight the lived experience of BME disabled people. We hope this combination inspires researcher and activist alike to pursue further work that reveals and challenges the multiple aspects of oppression that face them every day. While there is a focus in this edition on social care, we also recognise the need for this to be positioned within the context of inclusion. This requires us all to think in terms of the whole person and their occupation with the community as a valuable citizen. In preparing this guest editorial we made the comment “there’s a bolt missing” which summarise our concerns about why we feel we are not moving forward in terms of the inclusion as equal citizens of BME disabled people. Too often BME and disability issues are separated, often maintained as such because of fear, misunderstanding and single issue thinking. We see our “bolt” as something that will hold the two together. Despite the current context of an economic downturn, severe public spending cuts and the rise of right wing politics, we believe that BME disabled people and their allies can address issues of oppression by facilitating and encouraging lived experiences to be voiced. This will not only better BME and disability research, policy and practice but also make for more inclusive communities. Our “bolt” therefore is not made of metal, but rather more of lightening, that is through the presence of BME disabled people that are enabled to demonstrate leadership by speaking up and representing their everyday lived experience as unique, powerful and celebratory; as Nasa did well and Angela and many others continue to do.
Notes
- 1.
We refer to “disabled people” as including a wide range of impairments, physical, psychological, sensory, learning difficulty, long-term conditions and other unknown or contested issues. We also align our definition to the social model of disability, that is people are disabled by society not their impairments.
- 2.
The David Bennett inquiry was held in the UK after the death of David “Rocky” Bennett on 30 October 1998 in a medium secure psychiatric unit in Norwich after being restrained by staff. David Bennett was a 38-year-old African-Caribbean patient, who had suffered mental illness for 18 years, and had a diagnosis of schizophrenia.
Juile Jaye Charles Based at CEO Equalities National Council, UK.
Stephen Lee HodgkinsIndependent researcher based in the UK.
References
Disability Equality North West (2011), “Lancashire’s hidden stories; experience of disability among gypsy, roma and travellers, lesbian, gay, bisexual, transgender and black and minority ethnic communities”, available at: www.disability-equality.org.uk/news/denw-publishes-research-into-the-most-excluded-disabled-communities/n59 (accessed September 2012)
Equalities National Council (ENC) and Scope (2012), “Over-looked communities, over-due change: how services can better support BME disabled people”, available at: www.scope.org.uk/drupal-fm/213/download (accessed September 2012)
Letherby, G. (2006), “Emancipatory research”, in Victor, J. (Ed.), The Sage Dictionary of Social Research Methods, Sage, London