The sad ableism in Australia towards people with Down syndrome and the parents that choose to have them: from an online study

When 60 Minutes aired a segment called ‘Does Australia really want to see the end of Down syndrome?’ in August 2017, its Facebook platform was flooded with negative comments about people with Down syndrome and their parents. Belinda Johnson and Dr Raelene West from RMIT University examined the online responses to the program and uncovered confronting views of Down syndrome as an economic burden, a medical burden and a social burden. As they worked their way through comments questioning the right of children with Down syndrome to access publicly funded disability services in light of advances in prenatal testing, for example, the authors began to question the extent to which derogatory and ill-informed comments that push people with disabilities into an exhausting and endless process of justifying their existence should be tolerated in the name of free speech. Their findings were recently published in the Journal of Sociology.

Currently, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability is exposing widespread systemic discrimination towards people with disability in Australia. Many of the personal accounts shared with the Royal Commission have illuminated hurtful and destructive attitudes from support staff, service providers, family members, the justice system and, recently, the medical profession.

Submissions to the Royal Commission suggest that ableism is deeply active in various social areas in Australia. Ableism is a network of beliefs and practices that see able-bodied people viewing themselves as perfect, species-typical and fully human, and thus more valuable than their disabled counterparts. Critical disability studies theorist Fiona Kumari Campbell describes how ableism is ‘an attitude that devalues or differentiates disability through the valuation of able-bodiedness equated to normalcy’ so that disability is viewed as ‘inherently negative’ and something to be ‘ameliorated, cured or indeed eliminated’. (See http://journal.media-culture.org.au/index.php/mcjournal/article/view/46).

Within society, ableism can be expressed through explicit (conscious) or implicit (unconscious) attitudes and in discriminatory processes. These biases and lack of tolerance of bodily difference can lead to reduced social opportunities for people with disability. Individuals of physical, intellectual or psycho-social difference who are not able (or willing) to assimilate into an ableist normative space are labelled as ‘other’, and with this label comes negative assumptions of incapacity, difficulty, burden and dependence on others. The recent submissions to the Royal Commission have shown how systemic ableism has led to disturbing situations in medical and residential settings where individuals with disability are often viewed as not worthy of equal treatment, attention or support.

We recently published a paper in the Journal of Sociology, where we presented our research into ableism in online attitudes towards people with Down syndrome and the parents who chose to have them. Our analysis of ableist social attitudes towards Down syndrome resonates with experiences being raised at the Royal Commission. Our research data was ‘scraped’ from 60 Minutes Australia Facebook discussions which were set up around the televised segment, ‘Does Australia really want to see the end of Down syndrome?’, broadcast in August 2017. The segment focused on the implications of relatively new Non-Invasive Prenatal Testing (NIPT) technologies which can indicate quite early the probability of a pregnancy having Down syndrome.

Our research found many hateful and ignorant attitudes expressed in these posts which were very confronting for us as researchers and people who are a part of the disability community. Yet we know, anecdotally, that these sorts of comments are common when stories about people with Down syndrome are published online.

We shaped the paper around three main themes on ableism. The first theme was on attitudes about resource-use, which captured offensive views presented that if women continue pregnancies with high chance of Down syndrome, their child should not be entitled to publicly funded services. The second theme was broader social attitudes towards Down syndrome where a bizarre argument was made that not being born is in the best interests of a child with Down syndrome. A third theme addressed ableism in the medical profession as many women contributed descriptions of their own experiences of being heavily pressured into terminating pregnancies with high probability of Down syndrome. The discussion comments often included ignorant, discriminatory and old-fashioned stereotypical views of the lives of people with Down syndrome, from people that appeared to have no real-life experience of knowing anyone with Down syndrome.

In the face of such ableist hate speech denouncing the right of people with Down syndrome to be born and receive entitled NDIS services, we asked ourselves: To what extent should harmful and derogatory comments directed at vulnerable populations have to be tolerated in the name of free speech? And, is this hate speech and negative discourse contributing to any social good? We are currently writing a follow-up paper to think through these questions. We find ourselves challenged by the question of how the disability community can respond to highly ableist viewpoints.

Of particular note in our case study was the idea of ‘resistance narratives’ that were generated and promoted by people with Down syndrome, their families and the disability community. In these narratives, contributors challenged negative and ignorant viewpoints by presenting meaningful and valuable lives of real people with Down syndrome, describing their achievements, their contributions to their communities, and how valued they are in their families. Yet, resistance narratives take effort to produce and this effort can be burdensome, time-consuming and come at an emotional cost for the individuals producing them. As such we asked ourselves if producing resistance narratives was now just a necessary burden to contest the false and negative narratives of Down syndrome being presented online? And if not resistance narratives – then what?  Should harmful online disability hate speech be censored, can it be censored and if not, what then?

Ultimately, the wider community needs to consider where should we draw the line between online free speech and ableist online hate speech that is harmful to the disability community. As the Royal Commission is investigating, the recent past of disability in Australia has been characterised by abuse and violence, poor attitudes and exclusionary practice. Now is the time to redraft our future.

image copyright B Johnson

Content moderator: Dr Sue Olney