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Fiona Kumari Campbell Associate Professor , D/HOS (Learning & Teaching Scholarship) Griffith Law School
(Vice- President, Physical Disability Australia)
* My views are entirely my own and do not necessarily reflect the organizations I am associated with.
Where I am coming from?
• This presentation is embodied and represents a reflection on my own scholarly thinking, personal experiences and observations of the experiences of friends with disabilities (alive and deceased). • Acquired impairment at aged 18 year (now diagnosis as transverse transverse myelitis, no idea then) – C6/7 incomplete quad – ‘walking’/notwalking • Deemed a ‘non-traumatic’ injury … no rehab, diddling the system/used professional contacts to get orthotics, wheelchairs, typewriters, drugs, no vocational planning ~ this system has continued. I am 47 years old. • Was at university … advise to ‘get real’ and drop out … booked nursing home bed (didn’t take up), job at sheltered workshop (lasted 3 weeks) • My rehabilitation was through association with disabled people via disability activism, peer mentoring. • I required around 28 hours care a week to stay out of a nursing home – this was done through the support of friends, paying workers (and lucky for me) a pilot attendant care program DASI in Northcote.
Where am I going?
• 1987 resumed university study at La Trobe (no on campus assistance) and finished with a Bachelor of Legal Studies (Hons) in 1998. • I have worked to pay the extra costs of disability and stay out of a nursing home all my life. I have been eligible for very few programs – my journey has been a form of self funded freedom. (Last year I spent $15,000 of my own cash to purchase wheelchairs to remain in employment!) • In 1999 I took up a PhD scholarship and graduated with a PhD in 2004. I have worked as a university disability studies teacher for 17 years. It’s very lonely here … I am one of the few pwd’s in senior management. I am a mentor but cannot find a peer mentor. • I am aware that in even drawing a good salary my life is precarious, I only need one aspect of my life to come out of alignment – then my carefully balanced system could come crashing. I am a mid-life woman with disability, sole parenting a nine year old …. Life is good but always on notice.
• Discussion of NDIS – but in the broader context of living with disability (especially issues related to poverty, employment and education) law reform & policy engagements. • I start from the assumption that if we do not have a new vision of disability we cannot have a new vision of disability support.
Conceptual frameworks – what’s the problem/barriers – disability as an afterthought?
Disability as harmful or is Disability a form of harm? Consequences of exclusion ~ business as usual ableism, microaggression, exhaustion, residual histories
Disabled people are not a ‘discreet insular minority’ - We are not a State of Exception
Disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. (Preamble, Convention on the Rights of Persons with Disabilities, 6 December 2006, at [e]).
End the Impairment Hierarchy
Hierarchies distort .. Assumption s about worthiness, volition, degrees of need and autonomy I refuse to be an accountant of suffering! Randall Kennedy
Reject the evaluative ranking of disability and focus on disability in-context ~ the embodied experience
Language of Tragedy: The phrase “catastrophic disability” is not only offensive but distorts the complex lived experiences of disability across the spectrum. Goes against the sensibility underpinning the CRPD
Closing the loop
Anti Poverty: Supports
Imagination: education Income: employment
Poverty is not a State of Exception
• Disability makes one poor! (rippling effect). Understudied ~ disability and debt • “everyday expenses” associated with disability need to be covered by a NDIS, or by the opportunity to file disability tax deductions (DDIS, 4.9 – 4.11). • AIHW in its report Australia’s Health 2010, focused on the socio-economic gradient of health, concluding that those with advanced socio-economic status tend to be healthier than those individuals located at the lower SES. Disability and lower socio-economic status go hand-in – hand “severe disability was more common in those suburban areas where residents had relatively few economic resources than in areas whose residents had more” (p. 254). • Even pwd’s who on appearance earn good wages are under financial stress ~ as one of the few OECD countries to means test benefits … there is a disincentive to work. • According to 2007 data people with severe activity limitations were more than 8 times likely to experience high or very high levels of distress.
Money – Jobs – Positive Duty to access Workforce
• “There are several problems in the (re)integration of disabled people into the labour market, and there is little evidence that different policy measures have a strong impact on outcomes.” Transforming Disability into Ability: Policies
to Promote Work and Income Security for Disabled People, OECD, Paris,2003, p. 104.
• Australia’s rate of workforce participation by disabled people is at the lower end of the scale (ranked 13 out of 19) of OECD countries • In 2011 Australian disabled people experience a particularised form of vocational apartheid, we are in the words of a recent KPMG/Yooralla Report a “missing population”. • Labour force participation rates for persons with disability were just 53.2% (compared to 81% for able-bodied people). • People with disability that are working earn less than able-bodied workers: the gross medium income per week of $255 for a person with disability compares to $501 for those without disability. In contrast to other OECD countries, the personal income of disabled Australians is the lowest, being equal to 44% of that of a non-disabled person.
Education – what the hell is going on?
• Significant amount of DDA complaints relate to children accessing educational accommodations and supports; • As we consider people with disability preparing for work, we find only 30% of people with disability aged 15 – 64 completed Year 12 high school. • Of these, just 13% then transitioned to a bachelor’s or higher degree at university. • Just 3.2% of students attending higher education institutions have a disability. • Yet disabled people are disregarded as a cohort worthy of strategic prioritisation in equity planning, evaporating into the elusive mass of lower SES groups. • There is no positive duty to increase tertiary participation rate through the usage of financial incentives such as those given the indigenous Australians in the form of ABstudy.
With education comes imagination … an imagination that there are possibilities …
What’s good in the proposed NDIS?
• Disability funding is a responsibility of all Australians and is an essential plank of social protections plans; • Coming home: a shift back to Federal responsibility – integrated planning with employment and maybe education planning. • Support benchmarking – as long as it is situational and not merely impairment reductionist. • Assessment: Reasonable & Necessary Criteria (4.27 – 4.30). Beware of US., Judge Posner’s trivialization of disability accommodations? Standpoint of ‘reasonablness’. • Consumer choice model – a goods start – enforcement, & parameters, self –determination/leadership training? • Funds must be dedicated exclusively to long term disability support (hypothecation). Entrenched legislation – not subject to the whims of politics and economics • A real seller – individualised self directed funding • Gutting a no-fault system …. Must extend to a policy where causation is irrelevant.
What is of concern with NDIS?
• Whilst initially looking inclusive, in reality NDIS target groups are partitioned in terms of silos – questions of the ‘real scope’ of populations assisted in terms of funding support? • Inference in 3.5 of an educative, advocacy arm of the NDIA? Existing recourses – which ones!! • Apart from existing state/insurance arrangements, the proposal for a NIIS is not well argued and based on what I believe are exaggerated differences between the two cohorts of service users. Need to focus on habilitation and rehabilitation (Article 26 of the CRPD). • NIIS focus on injuries predominantly experienced by men. E.g. cosmetic surgery injuries (with the highest level of medical negligence claims) are experienced by women and left to the foibles of the common law system.
• Is the corporation model the best?- how do we have skilled monitoring, management and planning without reducing pwd’s participation to a mere advisory role? • Can the propose governance model really get disability – e.g. superannuation boards act instrumentally on market issues and not so well of ‘change of life’/social policy concerns. • Might a market based model be in collision with social protection agendas which maybe ‘unprofitable’? Check for this? • Should the CRPD approach to disability be privileged and be the guiding conceptual approach to disability rather than the ICF? • Can some corporation/governance strategy be introduced to train up pwd’s in the area. • Corporation expertise already lags in the area of gender equity – how can we ensure “nothing about us without us” – without being reduced to some advisory’ capacity?
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