“it ‘s time to Listen to People with Disabilities”

“It’s time to listen to the real experts-people with disabilities themselves”-Melissa Ryan

Over the past several decades, the disability movement and critical disability studies have challenged the dehumanisation of disabled people as objects of intervention. The dominant, individual model represents disability as a personal tragedy requiring cure or care by the medical and allied professions (Oliver, 1996). Within the context of these relationships, the expert voices of professionals are privileged at the expense of the devalued experiential knowledge and voices of disabled people.

This enables professionals to exercise paternalistic power in making decisions about fundamental elements of disabled people’s lives such as where and how they should live, whether or not they should work, the type of school they should attend, the type of support they need and whether or not they should become parents. More broadly, in public debates, disabled people are routinely ‘spoken about, rather than listened to as experts’ (Newell, 2006, p. 280).

This means that disabled people are both subject to stereotyping and, at the same time, systematically marginalised from debates about policy direction across a wide range of areas relevant to disabled people’s lives; from disability-related benefit reform in the UK to stem cell research in Australia (Briant, Watson, & Philo, 2013; Goggin & Newell, 2004).

In challenging professional dominance, voice has become an important yet ambivalent principle for the recognition of disability. Helen Meekosha (2001, p. 240) draws attention to its significance in her argument that:

Attempts by disabled people to speak for themselves mark a crucial shift in the nature of the political relations of disability to a stage in which they no longer accept Others as effective speakers on their behalf ... disabled people contest the world views of those who in the past had represented their interests, and had thereby assumed, from their silence, their incapacity.

At the same time, however, the principle of voice is ambivalent since there is no guarantee that disabled people will be heard or heard on their own terms. With the shift to a neoliberal rationality increasingly underpinning the provision of disability services, there is concern that disabled people are more likely to be offered limited opportunities for consumer choice rather than rights to recognition, presence, participation and voice in the public sphere (see Meekosha, 2001; Yeatman, 2000).

Approaching voice from the perspective of disability challenges the marginalisation of disabled people who use assistive technologies or non-spoken language when the use of similar technologies by others is normalised (see L. J. Davis, 2002, for a similar argument about the body). Voice, from this perspective, is not a tool to enforce the normalcy of particular communication means – such as hearing or spoken language.

On the contrary, it can encourage listening to those who communicate in different ways such as Deaf people or people with severe communication impairments (Ashby, 2011; L. J. Davis, 1995; Goggin, 2009).

It is also important that voice is not conceptualised in a homogenising way. Since the 1990s, division have emerged within the Australian disability movement. This includes segmentation along impairment lines which, when combined with significant cuts to advocacy services under the socially conservative Liberal-National Coalition government (1996–2007), arguably undermined the movement’s capacity to mobilise collectively for social change (Soldatic & Chapman, 2010).

At the same time, new networks and peak organisations such as Women with Disabilities Australia (WWDA) (Meekosha, 2001), the Aboriginal Disability Network NSW, the First Peoples Disability Network Australia (FPDN) (Hollinsworth, 2013; Soldatic & Chapman, 2010) and the National Ethnic Disability Alliance (NEDA) emerged.

These organisations recognise diversity within the disability movement and the intersection of disability with other forms of oppression. Notwithstanding renewed opportunities for collective mobilisation made possible with the more affirmative approach to disability advocacy under the Rudd-Gillard Labor Government (2007–2013) (Soldatic & Chapman, 2010) the movement remains a diverse network. In this context, attention to voice and listening requires recognition of differences within the disability movement.

Given that voice has become an important tool in struggles for recognition of disability then it is vital to understand the conditions of possibility for voice that matters. The politics of voice is a powerful yet one-sided analytic tool. It has enabled disabled people to ‘speak back’ to dominant representations of disability as an individual, medicalised problem.

Since disability is a relationship of power and privilege, however, then the onus of responsibility is not just on disabled people to speak otherwise about disability. Attention to listening (as the ‘other side’ of voice) redirects accountability for social change by calling into question ableist practices of misrecognition and appropriation, which systematically marginalise the voices of disabled people. In this way, listening not only functions as a precondition for voice but also enhances what it is possible to hear in situations of difference and inequality (Dreher, 2009; Thill, 2009).

There is evidence of openness to lived experience of disability as a form of expertise that can contribute to momentous and pervasive policy change. Beyond the policy development stage, however, voice is valued only in limited ways.

Attention to listening facilitates a process of standing under the ‘personal tragedy theory of disability’ (Oliver, 1986, p. 6) by recognising the lived experience of disability as a form of expertise that can shape path- breaking reform. In order for this process to be fully realised, however, it needs to be sustained and extended. Otherwise, disabled people may be end up being marginalised within a new system that simply offers ‘more of the same’ rather than being genuinely included in a transformed approach to the provision of disability supports where voice is valued.