The oscillating battle for disability inclusion

At the recent Future/Inclusive festival hosted by RMIT’s Social Innovation Hub, a panel chaired by Dr Raelene West (@raelene_west) from the Melbourne Disability Institute explored the gap between talk and action on disability inclusion. This post is an edited version of Dr West’s opening remarks at the event. Dr West has a PhD in Sociology, has been involved in disability advocacy, has lived experience of disability and has been on numerous disability committees.

Image of sound waves

In formulating our discussions for our session ‘the gap between talk and action on disability inclusion and the future of disability’, my thinkings turned to our history as a disability community in Australia – and my further thinkings brought to me to the concept of oscillation.

For those more humanities minded less science of you, oscillation is the repetitive or regular variation in magnitude of a value, associated with time, around about a central point within in a dynamic state.

Probably the most familiar example of oscillation would be the image of the electrical currents of radio waves and its electric current or voltage – the basis of the ABC logo – the image of the wavy up and down radio waves

I say this because the work of the disability community feels like oscillation. At any point in time, it can waver within the dynamic state of our society. Sometimes with our work those waves are high and sharp, condensed, and frenetic, with lots of rapid movement, change and development. For example, this was the case with implementation and development of the National Disability Insurance Scheme (NDIS) - one of the country's biggest social reforms -and the rapid changes around creating and implementing a new national disability service system. There is no doubt that development and implementation of the NDIS, designed to provide support for the most severe and profound people with disability in our community, is progressive and groundbreaking and world leading.

Yet the frenetic waves of establishment and activity have been interspersed with narratives of system cuts, abuse and neglect, bureaucratic red tape and workforce issues - all slowing and shifting the forward motion of the scheme’s ongoing implementation and our original vision for the scheme.

At other times those waves have tediously long and slow and movement towards change has been glacial. One example is the long process of deinstitutionalising disability support. In 1992, Australia enacted the Disability Discrimination Act. based on the social model of disability (Young & Ashman 2004; Basser & Jones 2002). The Act was put up as the major mechanism that would be used to fight discrimination experienced by people with disability in all areas of life and work – working to remove physical and attitudinal barriers excluding people with disability from inclusion in community.

This year we are 30 years into the DDA world. Yet a significant proportion of the built environment remains inaccessible. Our tram and train systems are still not fully accessible, discrimination is still frequently experienced in employment and education settings – our schools remain segregated. 30 years on, should we be questioning whether the Disability Discrimination Act has actually fulfilled its purpose? Those waves have been long and slow for people with disability still experiencing discrimination. While there has been some improvement, the lagging tail of exclusion and barriers remains. In fact, with the development of information technology, a new array of barriers has surfaced as people try to access information and utilise inaccessible IT systems.

Slow waves of change, with the odd victory or win, the removal of a barrier here or there - they are still there, they still exclude, they still ‘disable’ individuals with bodily impairment.

A favourite book of mine is The Future is History by Masha Gessen. She offers an historical narrative of how regimes from the past are able to regain a footing and re-establish themselves over time; that our futures are defined by the past. She argues that we emerge from the past to create or recreate a future based on our differing waves of experience and directions and perspectives we have been pushed and pulled through.

Similar to Gessen, our histories and past narratives as a disability community - our oscillations - define who we are now and then what our future will be. Our story has been built out of exclusion, the battle for inclusion, battles against discrimination, and work to create a better future for people with disability.

The social model defined the physical and attitudinal barriers in society that disable an individual. Many people these days are dismissive of social model. It’s criticised as being too binary; it doesn't take into consideration bodily impairment; it creates an ‘us and them’ of ‘abled and disabled’; what about if you don't experience oppression of barriers; it creates binaries that are fixed categories; it’s too comparative or relational.

But to paraphrase Carol Thomas (2004,2007) - until all physical and attitudinal barriers are removed, we haven’t even had the chance to explore how only bodily impairment, social relations and needed supports are truly operationalised …because we’re still dealing with the barriers.

Ableist relations are often situated within an able/nonabled divide, defined by concepts of the ‘other’ as opposed to the normative mainstream - those of bodily diversity as opposed to those ‘fully abled’.

Any critical exploration of the ‘past’ of disability experience, looking to the future of disability, requires an understanding of the critical disability studies concept of ‘ableism’. 

Key scholars in the field - Davis (1999), Kumari-Campbell (2001, 2008a, 2008b, 2009), Meekosha (2011), Goodley (2013, 2014), Vehmas and Watson (2014), and Thomas (2004) - define ableism as ‘an attitude that devalues or differentiates disability through the valuation of able-bodiedness equated to normalcy’, where disability is viewed as inherently negative and something to be eliminated, and where disability is viewed as a diminished state of humanness.  

These scholars highlight that under ableist assumptions, ‘normals’ and ‘those abled’ view themselves as more fully human than people of bodily difference, and highly value their ‘health, beauty, strength and capability’ above anything of differing stature. In creating a bodily standard of the normal and reducing the status of bodily difference, a distancing of disabled people is constructed through the ableist-norms of the majority.

Within society, ableism can be diversely expressed through explicit (conscious) and implicit (unconscious) attitudes, through a valuing or non-valuing of attributes, through perceived ideals and through social processes based on discrimination and bias.

Within our society, we all share spaces where social interactions contribute to the construction of how the body is viewed. Frequently, the ableist gaze seeks to invalidate the ‘disabled body’ within the social interaction, reverting to ingrained social expectations and biases that recognise ‘perfection’ in normality and ‘difference’ as an other. Bodily difference is seen as something less tolerated or as inadequate, as a burden, to be paid for with resources – and the burden of providing resources to support these differing bodies is often highly visible - for example in frequent references in the media and government to ‘cost blowouts’ in the NDIS.

Resources for support services to accommodate bodily difference, are and have historically been, viewed as too hard, too costly, and as requiring too many resources. Our lived narrative of the wave of economic burden put on people with disabilities is ‘yes it’s the right thing to do morally, but it is a bit of a pain to pay for, eh?’ - devalued oscillation. 

And within an ableist framework, the privileged, powerful and dominate voice of the ‘abled’ assessors get to assess the needs of these ‘others’. The current social power structures enable enforcement of assessment of need for these resources based on power, normative values and privilege.  

Sitting outside of the NDIS are 4 million Australians that also identify with disability. They require mainstream services – services that need to become ‘disability friendly’, with ‘disability knowledge’ - with an attitude of understanding and inclusion and capacity to deal with ‘things disability’.  

Australia needs to enable people with disability to freely access services and have their needs met outside of an ableist framework. 

So the disability communities continues to fight for inclusion - oscillating through various events of inclusion and exclusion and moving onwards towards a hopefully improved future. We continue the oscillating battle through dramatic improvements, ongoing abuse and neglect, old and new barriers to inclusion, high tech advances in technology, and ableist assumptions and attitudes. We’re still fighting for services that we are entitled to, stepping forward and back. 

For the disability community, it will not just be our past narratives that define our future - our oscillating narratives - although this will most definitively play a part – more than likely, it will be the attitudes of the ‘able mainstream’ towards the disability community and their attitudes of inclusion and supports - that will define our future.  

References

BASSER, L. A.; JONES, M. The Disability Discrimination Act 1992 (Cth): a three-dimensional approach to operationalising human rights. Melbourne University Law Review, [s. l.], v. 26, n. 2, p. 254, 2002.

Davis, L. (1999) ‘Crips Strike Back: The Rise of Disability Studies’, American Literary History 11(3): 500–12 ISSN: 0896-7148 , 1468-4365.

Gessen M (2018) The Future is History - How Totalitarianism Reclaimed Russia, Granta Great Britain

Goodley, D. (2013) ‘Dis/entangling Critical Disability Studies’, Disability & Society 28(5): 631–44 https://doi.org/10.1080/09687599.2012.717884

Goodley, D. (2014) Dis/ability Studies: Theorising Disablism and Ableism. New York: Routledge.ISBN 9780415827218

Kumari-Campbell, F. (2001) ‘Inciting Legal Fictions: Disability’s Date with Ontology and the Ableist Body of the Law’, Griffith Law Review 10(1): 42–62. https://research-repository.griffith.edu.au/handle/10072/3714

Kumari-Campbell, F. (2008) ‘Exploring Internalized Ableism using Critical Race Theory’, Disability & Society 23(2): 151–62. https://doi.org/10.1080/09687590701841190

Kumari-Campbell, F. (2008b) Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan. https://journal.media-culture.org.au/index.php/mcjournal/article/view/46

Meekosha, H. (2011) ‘Decolonising Disability: Thinking and Acting Globally’, Disability & Society 26(6): 667–82 https://doi.org/10.1080/09687599.2011.602860

Thomas, C. (2004a) ‘Rescuing a Social Relational Understanding of Disability’, Scandinavian Journal of Disability Research 6(1): 22–36. https://www.sjdr.se/articles/10.1080/15017410409512637/

Thomas, C. (2004b). 'How is Disability understood: An examination of sociological approaches.' Disability & Society 19(6):569-583 https://doi.org/10.1080/0968759042000252506

Thomas, C. (2007). Sociologies of Disability and Illness: Contested ideas in disability studies and medical sociology. New York, Palgrave McMillan ISBN: 9781403936370

Vehmas, S. and N. Watson (2014) ‘Moral Wrongs, Disadvantages, and Disability: A Critique of Critical Disability Studies’, Disability & Society 29(4): 1–13 doi=10.1080/09687599.2013.831751

Young L and Ashman A (2004) Deinstitutionalisation in Australia Part i: historical perspectives; The British Journal of Developmental Disabilities Vol. 50, Part 1, JANUARY 2004, No. 98, pp. 21-28

Content moderator: Sue Olney