Reboot: disability and impairment

The Disabled People's Movement in the UK has used the term "Disabled" for many years. This terminology is preferred over "people with disabilities" to emphasise that Disabled people are disabled by societal barriers rather than by personal shortcomings. This language choice underscores the idea that oppression imposed on disabled people, and has a specific character, often manifesting as testimonial silencing in the storytelling of our experiences. While storytelling may seem neutral, the lives of Disabled people are frequently misrepresented. Authors, often unwittingly, tend to focus on personal experience and, if trusted at all, use it to replace the research evidence or the working wisdom of Disabled academics and professionals. For many, using the term "Disabled" reflects a journey of becoming part of a movement—a choice to write and co-author on shared interests, speaking with activism and intent to disrupt.

 

The way I read it, many of us still understand ‘disability’ to mean many things: an impairment, a condition, a difference, a subject, a diagnosis or a label. But, for many anti-ableists the fight is to haveableism recognised, and its character defined as the institutional, systemic and global inequality that disadvantages the whole disabled population. For many identity and personal difference is only part of the predicament we face. As the Black Lives Matter movement is teaching us, there’s more to injustice than skin tone and prejudice. Theory, policy, practice, language and culture create worlds that impose huge harm. Therefore, we need more conversations about the way social injustice moulds storytelling, in order to challenge the racism, classism, sexism, ageism, classism, homophobia, religious intolerance, that informs our ableism. 

 

Disablism can be likened to racism, sexism, and homophobia. The disabling effects imposed by society on the disabled population add to any challenges they may face due to their differences. Language is critically important, especially in public discourse, because it highlights that everyone can address ableism, whether they have an impairment or not. Being an ally needs to denote legitimacy, and is to acknowledge the storytelling of the Disabled People's movement— a voice often misrepresented because they are deemed untrustworthy.

 

Ableism, is a characteristic discrimination and a problem in society. The 'and' is really important I think, because disability is already used to mean so much. While aspects of a layered definition may appear confusing at first, once considered, the addition of a defined 'ism' to something viewed solely as a personal predicament helps make other deeply rooted issues more visible. Furthermore, when language is used to express the interests of a large group, a global population, it has power. It adds to - rather than dismisses - what is often seen as an individual’s problem. 

 

There are local variations across the globe. From a UK perspective, using "Disabled" helps articulate the leadership of D/deaf and Disabled People’s Organisations and the Disabled People's movement on matters of human rights and social justice. It highlights the specific barriers in the environment, institutional practices, disadvantages and cultural inequality. Using "Disabled" signifies that, in addition to personal differences, experiencing ableism is imposed on a sizeable group. It is important to recognise that "people with disabilities" is more often used in many European countries and the US, while "people with disability" is preferred in Australia.

 

For many disabled people, used as a verb, aligns meaning to disability theory, which is often referred to in Disability Studies as the Medical Model and Social Model of disability. The theory is important, here, because it points to issues of culture, a societal storytelling that frames disability as a personal deficit requiring medical intervention. More widely viewed as a rare in occurrence, disabled people are viewed a few individuals requiring care and/or cure. However, anti-ableist theorists work with the idea that the environment, both physical and cultural, plays a large part in causing disadvantage that is imposed on the disabled population.  As a self-referencing term, I have used Disabled, because it refers to the knowledge and the activism I gained from Disability Studies and Disability Equality.  Using it to refer to culture also means others are free to identify – or not - as it indicates a group not a network or community. Within the Disabled people's movement, as within other civil rights groups [say the Feminist movement] there are radicals, moderates and non-subscribers! 

 

As part of my Ph.D research, I read over 3000 journal abstracts on ‘disability’. I used a defined sensitivity - personal experience, research knowledge and professional wisdom - to analyse these texts. Among a growing amount of documents with disability in the title, few spoke about the interests of the Disabled population, largely if some referred to disability as a topic most did not reference existing leaders in the field or past activist groups. Examining those that had not done their homework, enabled me to identify key themes that misrepresent the Disabled people's movement’s interests in their storytelling. I found that I began to feel whether the articles reflected a shared direction, a group voice, and whether writers described the ideas of the Disabled people's movement. It was not so much the words writers used, but the meaning they conveyed that I was interested in. Even where I felt writers struggled with their wording, I could see how they sought to put a recognisable representation of political interest into words. 

 

Group strength

For many the term disabled has become positive and empowering, as it denotes the recognition of a protected characteristic (discrimination) or a named oppression (ableism). Furthermore, when the ‘d’ of disabled is capitalised it represents a choice to fight for civil rights and justice. As it can be used to convey resistance - I am disabled by attitudes; he is disabled by systems, he faces disabling structures - again these imply that being disabled is something is external to the person. Significantly this perspective aligns with anti-sexist, anti-homophobic or anti-racist views of inclusive practice, where institutional and societal ableism is the responsibility and need to be addressed by everyone. The vision of an equitable world strategic aim that requires both  acknowledgment of disablism within organisations and across institutions, with an articulation against the ableism in society’s storytelling more widely.

 

As an equivalent term to feminist, ‘anti-ableists’ are those who hold the view that ableism needs challenging. To articulated this, some activist articulate that the opposite of ‘disabled’ is not ‘able-bodied’ or ‘abled’, but ‘non-disabled’ or having ‘able privilege'.  For those working in Deaf and Disabled People's Organisations for example, the use of the word Disabled is shorthand for a political voice and shared interests. Disability is not to be banned, equally ‘impairment’ is ok, but needs to be used with nuance to talk about medical conditions, diagnosis or description of functioning – probably in more private conversation in order to respect individuality and anonymity.  

 

From a terminology standpoint, many now think that it is not up to disabled people to fight for a voice, professionals need to be more fluent when articulating dis/ableism in their work. Similarly, it is not up to individuals facing hate speech to educate professionals about racism: the onus is on professionals to speak against the character of oppression. Professionals have a duty, Therefore, a more explicit terminology is needed to inform each marginalised group. As individuals recipient of oppression need to be framed within the wider hostility of society in which they are negatively represented as a group. In the worst cases, and there are many, it may be easier to understand the motivation for prejudice in relation to wider assumptions about Disabled people, than to ask them to label or justify their identity.

 

Having said all this, history is a flow not a snapshot.  Reality only reveals itself as we blink, with the distortion of distance, it is views full of bias, ignorance and the misrepresentation of privilege through a present day lens. Disabled people’s dis-tory needs to be told, trusted and acknowledged, as an injustice without shame but with increasing clarity. More needs to be said about the segregation, institutionalisation and sterilisation of a sizable population. Many Disabled people losing their lives fighting for rights, visibility and social justice: a right to education, a right to work, a right to a life in community, and a right to a family life.  I feel blessed by the tribe, the earlier disability movement’s knowers, who told of their experience and understanding a world that that had silenced their existence. Disabled people who also faced sexism, racism, and/or homophobia. 

 

A glossary in development

Wording also has significance for empowerment, particularly for those wishing to work ethically within education, policy, and legislation in public roles. Understanding the critical difference between different terms allows a choice to talk separately and clearly about:

 

d/Deaf and Disabled People's Organisations: groups and networks run and organised by Disabled people, where Deaf people recognise themselves as a community with their own language – British Sign Language.

Ableism: a specific type of societal oppression, akin to homophobia, racism, sexism, or religious intolerance held in the language of communities and culture of society more widely.

Disability discrimination: a specific type of organisational oppression levelled directly at Disabled people, much like misogyny or religious hate speech that operates within homes, public spaces and across organisational boundaries. Disablism defines a specific type of oppression levelled directly at disabled people, much like misogyny, race or religious hate speech, that operates within groups, networks and communities of practice. 

Disabled people: individuals in receipt of ableism and org/inst discrimination

Anti-ableist: a defined position against ableism, an oppression that disabled people face specifically – like feminist or anti-racist.

 

 

 This piece has been re-written to convey the understanding I gained from recent research. Therefore, I thank those who joyfully gave time to answer my questions: without them there would be no words. 

 

Bibliography 

Barnes. (1991). Discrimination: disabled people and the media. Contact, 45-48.

Barton, L. (2005). Emancipatory research and disabled people. Educational Review, 57(3), 317-327.

Beresford, P. (2003). It's our lives, A short theory of Knowledge, Distance and Experience. London: Citizen Press / Shaping our lives.

Burch, L. (2018). ‘You are a parasite on the productive classes’: online disablist hate speech in austere time. Disability and Society, 33(3), pp. 392-415.

Campbell, J., & Oliver, M. (1996). Disability Politics. London: Routlege.

Chapman, L. (2011). A Different Perspective on Disability Equality, a practical handbook. Huddersfield: EQT Publishing.

Crow, L. (2014, 8 28). Scroungers and Superhumans: Images of Disability from the Summer of 2012: A Visual Inquiry. Journal of visual culture, 13(2), pp. 168-181.

Disability Rights UK. (2018, 11 16). Ministers and councils urged to dump ‘disability tax’. Retrieved 11 18, 2018, from Disability Rights UK: https://www.disabilityrightsuk.org/news/2018/november/ministers-and-councils-urged-dump-‘disability-tax’

Dolmage, J. T. (2017). Academic Ableism: Disability and Higher Education. San Francisco: University of Michigan Press.

Finklestein, V. (1999). Professions Allied to the Community (PACs) . Therapy Weekly, 1-9.

Frame Works. (2016). How to Talk About Disability and Human Rights. Frame Works. Washington: Frame Works.

Goodley, D. (2001). Disability and Society, 16(2), 207-231.

Goodley, D. (2014). Dis/ability Studies: Theorising disablism and ableism. London: Routlege.

Goodley, D., Lawthom, R., & Runswick-Cole, K. (2014). Dis/ability and austerity: beyond work and slow death. Disability & Society, 29(6), 980-984.

Hunt, P. (2018, 11 16). Retrieved 11 19, 2018, from The Conversation: https://theconversation.com/un-envoy-is-correct-to-call-for-greater-social-rights-protections-in-the-uk-says-former-rapporteur-106814

Kafer, A. (2013). Feminist, Queer, Crip. Indiana: Indiana University Press.

Kumari Campbell, F. (2009). Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan.

Liddiard, K. (2018, 9 4). Rethinking Disability: Emmerdale. Retrieved 11 10, 2018, from Society Matters: https://medium.com/society-matters/rethinking-disability-emmerdale-a204a48094a

McRuer, R. (2006). Crip Theory: Cultural Signs of Queerness and Disability (Cultural Front) [Kindle Edition]. New York : New York University Press.

Michalko, R. (2002). The Difference That Disability Makes [Kindle Edition]. Philadephia: Temple University Press.

Morris, J. (2001). Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights. Hypathia, 16(4), 1-16.

Norah Fry Centre for Disability Studies. (2017). The Learning Disabilities Mortality Review (LeDeR) Programme.University of Bristol, University of Bristol Norah Fry Centre for Disability Studies. Norah Fry Centre for Disability Studies, 8 Priory Road, Clifton, Bristol, BS8 1TZ.

Oliver, M. (2016). Rewriting history: the case of the Disability Discrimination Act 1995. Disability & Society, 31(7), 966-968.

Priestly, M. (2003). Disability, A Life Course Approach. Cambridge: Polity Press.

Quarmby, K. (2011). Scapegoat [Kindle Edition]. London: Portobello Books Ltd.

Rieser, R., & Mason, M. (1992). Disability Equality in the Classroom: A human rights issue. London: Disability Equality in Education.

Runswick-Cole, K., Goodley, D., & Lawthorn, R. (2014). Dis/ability and austerity: beyond work and slow death (Vol. 29). Disability in Society.

Ryan, F. (2019). Crippled: Austerity and the Demonization of Disabled People . London: Verso Books.

Scarlet, M. (2015, 7 2). The Cruelest Cut. Retrieved 9 28, 2015, from Huffington Post (UK Edition): http://www.huffingtonpost.co.uk/mik-scarlet/the-cruelest-cut_b_7694916.html

Scope. (2017). Disability facts and figures . Retrieved 4 11, 2018, from Scope - about disability : https://www.scope.org.uk/media/disability-facts-figures#LFi851bsAdF0fD0t.99

Shakespeare, T. (2006). Disability Rights and Wrongs. Abingdon: Routledge.

Slorach, R. (2015). A Very Capitalist Condition: A History and Politics of Disability. London: Bloomsbury.

Stone, E., & Priestley, M. (1996). Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers. The British Journal of Sociology, 47(4), 699-716.

Swain, J., French, S., Barnes, C., & Thomas, C. (2014). Disabling Barriers - Enabling Environments Kindle Edition.London: Sage.

Titchkosky, T. (2011). The Question of Access: Disability, Space, Meaning. Toronto: Toronto University Press.

UPIAS. (1975). Fundamental principles of disability. London: UPIAS.

Vehmas, S., & Watson, N. (2013, 429). Moral wrongs, disadvantages, and disability: a critique of critical disability studies. Disability & Society, pp. 638-650.