Reboot: disability and impairment

The Disabled people's movement in the UK has used the term Disabled for many years. As I understand it, Disabled, rather than people with disabilities, is used to emphasise the idea that Disabled people are disabled by the world rather than have a number of failings. Also, the oppression imposed on disabled people has a character. For many this can be viewed as a form testimonial silencing apparent in the telling of globe-local our stories. While storytelling may seem neutral, often disabled people's lives are misrepresented.  authors, unwittingly, tend to focus on person experience, and if trusted at all, use it to replace the research evidence or the working wisdom of academics and professionals identifying as disabled. For a growing number, therefore, using the term disabled, reflects a journey, becoming part of tribe - a step in a movement. It is a choice to write, and co-author, on shared interest: speaking with activism and with 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 have dis/ableism recognised, and its character defined as the institutional, systemic and global inequality that disadvantages Disabled people as a group. For many identity and personal difference is only part of the predicament we face. As the Black Lives Matter movement is teaching many of 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, homophobia…. In the most simplistic way, one could say that the disabling effects of society imposed on Disabled people are in addition to the possible problems that may be caused by their difference.  The critical implication of language, is specifically important in public, because it spells out that everyone can do something about naming ablism, whether they have an impairment or not. Being an ally needs to denote legitimacy, an acknowledgement of stories - the Disabled people's movement – the voices of many whose storytelling is often misrepresented because it is 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. 

 

From a UK perspective, using 'Disabled' helps articulate the leadership of The Disabled people's movement on matters relating to human rights and social justice. For example, highlighting the specific barriers in the environment, the institutional practices and the prejudice ignored or permitted within the culture of many communities. Using the term Disabled, for many, spells out that in addition to personal difference, experiencing dis/ableism is imposed on a sizeable group within the population. Using 'Disabled people' helps articulate the ideas of a movement. Therefore, it is also important to understand that ‘people with disabilities’ is used in many European countries, and also in the US. In addition ‘people with disability’ seems to be a preferred term in Australian legislation.

 

For many disabled, 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 in text, particularly for those wishing to work ethically within education, policy, and legislation in the public roles. Understanding the critical difference between these different terms allows a choice to talk separately and clearly about:

 

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.

Disablism: 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 dis/ableism

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. 

 

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