Academic literature on the topic 'National Service Framework for Renal Services (Great Britain)'

The National Health Service (NHS) supplies the majority of health care in Great Britain but is virtually the monopoly provider of high technology and disaster services such as treatment for chronic renal failure or end-stage renal disease (ESRD).

Introduction The scientific validity of climate change claims, how to intervene (if at all) in environmental, economic, political and social consequences of climate change, and the adaptation and mitigation needed with any given climate change scenario, are contested areas of public, policy and academic discourses. For marginalised populations, the climate discourses around adaptation, mitigation, vulnerability and resilience are of particular importance. This paper considers the silence around disabled people in these discourses. Marci Roth of the Spinal Cord Injury Association testified before Congress in regards to the Katrina disaster: [On August 29] Susan Daniels called me to enlist my help because her sister in-law, a quadriplegic woman in New Orleans, had been unsuccessfully trying to evacuate to the Superdome for two days. […] It was clear that this woman, Benilda Caixetta, was not being evacuated. I stayed on the phone with Benilda, for the most part of the day. […] She kept telling me she’d been calling for a ride to the Superdome since Saturday; but, despite promises, no one came. The very same paratransit system that people can’t rely on in good weather is what was being relied on in the evacuation. […] I was on the phone with Benilda when she told me, with panic in her voice “the water is rushing in.” And then her phone went dead. We learned five days later that she had been found in her apartment dead, floating next to her wheelchair. […] Benilda did not have to drown. (National Council on Disability, emphasis added) According to the Intergovernmental Panel on Climate Change (IPCC), adaptation is the “Adjustment in natural or human systems in response to actual or expected climatic stimuli or their effects, which moderates harm or exploits beneficial opportunities” (IPCC, Climate Change 2007). Adaptations can be anticipatory or reactive, and depending on their degree of spontaneity they can be autonomous or planned (IPCC, Fourth Assessment Report). Adaptations can be private or public (IPCC, Fourth Assessment Report), technological, behavioural, managerial and structural (National Research Council of Canada). Adaptation, in the context of human dimensions of global change, usually refers to a process, action or outcome in a system (household, community, group, sector, region, country) in order for that system to better cope with, manage or adjust to some changing condition, stress, hazard, risk or opportunity (Smit and Wandel). Adaptation can encompass national or regional strategies as well as practical steps taken at the community level or by individuals. According to Smit et al, a framework for systematically defining adaptations is based on three questions: (i) adaptation to what; (ii) who or what adapts; and (iii) how does adaptation occur? These are essential questions that have to be looked at from many angles including cultural and anthropological lenses as well as lenses of marginalised and highly vulnerable populations. Mitigation (to reduce or prevent changes in the climate system), vulnerability (the degree to which a system is susceptible to, and unable to cope with, the adverse effects of climate change), and resilience (the amount of change a system can undergo without changing state), are other important concepts within the climate change discourse. Non-climate stresses can increase vulnerability to climate change by reducing resilience and can also reduce adaptive capacity because of resource deployment to competing needs. Extending this to the context of disabled people, ableism (sentiment to expect certain abilities within humans) (Wolbring, “Is there an end to out-able?”) and disablism (the unwillingness to accommodate different needs) (Miller, Parker and Gillinson) are two concepts that will thus play themselves out in climate discourses. The “Summary for Policymakers” of the IPCC 2007 report, Climate Change 2007: Impacts, Adaptation and Vulnerability, states: “Poor communities can be especially vulnerable, in particular those concentrated in high-risk areas. They tend to have more limited adaptive capacities, and are more dependent on climate-sensitive resources such as local water and food supplies.” From this quote one can conclude that disabled people are particularly impacted, as the majority of disabled people live in poverty (Elwan). For instance, CARE International, a humanitarian organisation fighting global poverty, the UN Office for the Coordination of Humanitarian Affairs, and Maplecroft, a company that specialises in the calculation, analysis and visualisation of global risks, conclude: “The degree of vulnerability is determined by underlying natural, human, social, physical and financial factors and is a major reason why poor people—especially those in marginalised social groups like women, children, the elderly and people with disabilities—are most affected by disasters” (CARE International). The purpose of this paper is to expose the reader to (a) how disabled people are situated in the culture of the climate, adaptation, mitigation and resilience discourse; (b) how one would answer the three questions, (i) adaptation to what, (ii) who or what adapts, and (iii) how does adaptation occur (Smit et al), using a disabled people lens; and (c) what that reality of the involvement of disabled people within the climate change discourse might herald for other groups in the future. The paper contends that there is a pressing need for the climate discourse to be more inclusive and to develop a new social contract to modify existing dynamics of ableism and disablism so as to avoid the uneven distribution of evident burdens already linked to climate change. A Culture of Neglect: The Situation of Disabled People As climates changes, environmental events that are classified as natural disasters are expected to be more frequent. In the face of recent disaster responses, how effective have these efforts been as they relate to the needs and challenges faced by disabled people? Almost immediately after Hurricane Katrina devastated the Gulf Coast, the National Council on Disability (NCD) in the United States estimated that 155,000 people with disabilities lived in the three cities hardest hit by the hurricane (about 25 per cent of the cities’ populations). The NCD urged emergency managers and government officials to recognise that the need for basic necessities by hurricane survivors with disabilities was “compounded by chronic health conditions and functional impairments … [which include] people who are blind, people who are deaf, people who use wheelchairs, canes, walkers, crutches, people with service animals, and people with mental health needs.” The NCD estimated that a disproportionate number of fatalities were people with disabilities. They cited one statistic from the American Association of Retired Persons (AARP): “73 per cent of Hurricane Katrina-related deaths in New Orleans area were among persons age 60 and over, although they comprised only 15 per cent of the population in New Orleans.” As the NCD stated, “most of those individuals had medical conditions and functional or sensory disabilities that made them more vulnerable. Many more people with disabilities under the age of 60 died or were otherwise impacted by the hurricanes.” As these numbers are very likely linked to the impaired status of the elderly, it seems reasonable to assume similar numbers for non-elderly disabled people. Hurricane Katrina is but one example of how disabled people are neglected in a disaster (Hemingway and Priestley; Fjord and Manderson). Disabled people were also disproportionately impacted in other disasters, such as the 1995 Great Hanshin Earthquake in Japan (Nakamura) or the 2003 heatwave in France, where 63 per cent of heat-related deaths occurred in institutions, with a quarter of these in nursing homes (Holstein et al.). A review of 18 US heatwave response plans revealed that although people with mental or chronic illnesses and the homeless constitute a significant proportion of the victims in recent heatwaves, only one plan emphasised outreach to disabled persons, and only two addressed the shelter and water needs of the homeless (Ebi and Meehl; Bernhard and McGeehin). Presence of Disabled People in Climate Discourse Although climate change will disproportionately impact disabled people, despite the less than stellar record of disaster adaptation and mitigation efforts towards disabled people, and despite the fact that other social groups (such as women, children, ‘the poor’, indigenous people, farmers and displaced people) are mentioned in climate-related reports such as the IPCC reports and the Human Development Report 2007/2008, the same reports do not mention disabled people. Even worse, the majority of the material generated by, and physically set up for, discourses on climate, is inaccessible for many disabled people (Australian Human Rights Commission). For instance, the IPCC report, Climate Change 2007: Impacts, Adaptation and Vulnerability, contains Box 8.2: Gender and natural disasters, makes the following points: (a) “men and women are affected differently in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction”; (b) “natural disasters have been shown to result in increased domestic violence against, and post-traumatic stress disorders in, women”; and (c) “women make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery.” The content of Box 8.2 acknowledges the existence of different perspectives and contributions to the climate discourse, and that it is beneficial to explore these differences. It seems reasonable to assume that differences in perspectives, contributions and impact may well also exist between people with and without disabilities, and that it may be likewise beneficial to explore these differences. Disabled people are differently affected in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction. Disabled people could also make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery, important as distributors of relief efforts and in reconstruction design. The Bonn Declaration from the 2007 international conference, Disasters are always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations, highlighted many problems disabled people are facing and gives recommendations for inclusive disaster preparedness planning, for inclusive response in acute emergency situations and immediate rehabilitation measures, and for inclusive post-disaster reconstruction and development measures. Many workshops were initiated by disabled people groups, such as Rehabilitation International. However, the disabled people disaster adaptation and mitigation discourse is not mainstreamed. Advocacy by people with disability for accessible transport and universal or “life-cycle” housing (among other things) shows how they can contribute significantly to more effective social systems and public facilities. These benefit everyone and help to shift public expectations towards accessible and flexible amenities and services—for example, emergency response and evacuation procedures are much easier for all if such facilities are universally accessible. Most suggestions by disabled people for a more integrative, accessible physical environment and societal attitude benefit everyone, and gain special importance with the ever-increasing proportion of elderly people in society. The IPCC Fourth Assessment Report is intended to be a balanced assessment of current knowledge on climate change mitigation. However, none of the 2007 IPCC reports mention disabled people. Does that mean that disabled people are not impacted by, or impact, climate change? Does no knowledge of adaptation, mitigation and adaptation capacity from a disabled people lens exist, or does the knowledge not reach the IPCC, or does the IPCC judge this knowledge as irrelevant? This culture of neglect and unbalanced assessment of knowledge evident in the IPCC reports was recognised before for rise of a ‘global’ climate discourse. For instance, a 2001 Canadian government document asked that research agendas be developed with the involvement of, among others, disabled people (Health Canada). The 2009 Nairobi Declaration on Africa’s response to climate change (paragraph 36) also asks for the involvement of disabled people (African Ministerial Conference on the Environment). However, so far nothing has trickled up to the international bodies, like the IPCC, or leading conferences such as the United Nations Climate Change Conference Copenhagen 2009. Where Will It End? In his essay, “We do not need climate change apartheid in adaptation”, in the Human Development Report 2007/2008, Archbishop Desmond Tutu suggests that we are drifting into a situation of global adaptation apartheid—that adaptation becomes a euphemism for social injustice on a global scale (United Nations Development Programme). He uses the term “adaptation apartheid” to highlight the inequality of support for adaptation capacity between high and low income countries: “Inequality in capacity to adapt to climate change is emerging as a potential driver of wider disparities in wealth, security and opportunities for human development”. I submit that “adaptation apartheid” also exists in regard to disabled people, with the invisibility of disabled people in the climate discourse being just one facet. The unwillingness to accommodate, to help the “other,” is nothing new for disabled people. The ableism that favours species-typical bodily functioning (Wolbring, “Is there an end to out-able?”; Wolbring, “Why NBIC?”) and disablism (Miller, Parker, and Gillinson)—the lack of accommodation enthusiasm for the needs of people with ‘below’ species-typical body abilities and the unwillingness to adapt to the needs of “others”—is a form of “adaptation apartheid,” of accommodation apartheid, of adaptation disablism that has been battled by disabled people for a long time. In a 2009 online survey of 2000 British people, 38 per cent believed that most people in British society see disabled people as a “drain on resources” (Scope). A majority of human geneticist concluded in a survey in 1999 that disabled people will never be given the support they need (Nippert and Wolff). Adaptation disablism is visible in the literature and studies around other disasters. The 1988 British Medical Association discussion document, Selection of casualties for treatment after nuclear attack, stated “casualties whose injuries were likely to lead to a permanent disability would receive lower priority than those expected to fully recover” (Sunday Morning Herald). Famine is seen to lead to increased infanticide, increased competitiveness and decreased collaboration (Participants of the Nuclear Winter: The Anthropology of Human Survival Session). Ableism and disablism notions experienced by disabled people can now be extended to include those challenges expected to arise from the need to adapt to climate change. It is reasonable to expect that ableism will prevail, expecting people to cope with certain forms of climate change, and that disablism will be extended, with the ones less affected being unwilling to accommodate the ones more affected beyond a certain point. This ableism/disablism will not only play itself out between high and low income countries, as Desmond Tutu described, but also within high income countries, as not every need will be accommodated. The disaster experience of disabled people is just one example. And there might be climate change consequences that one can only mitigate through high tech bodily adaptations that will not be available to many of the ones who are so far accommodated in high income countries. Desmond Tutu submits that adaptation apartheid might work for the fortunate ones in the short term, but will be destructive for them in the long term (United Nations Development Programme). Disability studies scholar Erik Leipoldt proposed that the disability perspective of interdependence is a practical guide from the margins for making new choices that may lead to a just and sustainable world—a concept that reduces the distance between each other and our environment (Leipoldt). This perspective rejects ableism and disablism as it plays itself out today, including adaptation apartheid. Planned adaptation involves four basic steps: information development and awareness-raising; planning and design; implementation; and monitoring and evaluation (Smit et al). Disabled people have important knowledge to contribute to these four basic steps that goes far beyond their community. Their understanding and acceptance of, for example, the concept of interdependence, is just one major contribution. Including the concept of interdependence within the set of tools that inform the four basic steps of adaptation and other facets of climate discourse has the potential to lead to a decrease of adaptation apartheid, and to increase the utility of the climate discourse for the global community as a whole. References African Ministerial Conference on the Environment. Nairobi Declaration on the African Process for Combating Climate Change. 2009. 26 Aug. 2009 ‹ http://www.unep.org/roa/Amcen/Amcen_Events/3rd_ss/Docs/nairobi-Decration-2009.pdf ›. American Association of Retired Persons. We Can Do Better: Lessons Learned for Protecting Older Persons in Disasters. 2009. 26 Aug. 2009 ‹ http://assets.aarp.org/rgcenter/il/better.pdf ›. Australian Human Rights Commission. “Climate Change Secretariat Excludes People with Disabilities.” 2008. 26 Aug. 2009 ‹ http://www.hreoc.gov.au/about/media/media_releases/2008/95_08.html ›. Bernhard, S., and M. McGeehin. “Municipal Heatwave Response Plans.” American Journal of Public Health 94 (2004): 1520-21. CARE International, the UN Office for the Coordination of Humanitarian Affairs, and Maplecroft. Humanitarian Implications of Climate Change: Mapping Emerging Trends and Risk Hotspots for Humanitarian Actors. CARE International, 2008. 26 Aug. 2009 ‹ http://www.careclimatechange.org/files/reports/Human_Implications_PolicyBrief.pdf ›, ‹ http://www.careclimatechange.org/files/reports/CARE_Human_Implications.pdf ›. "Disasters Are Always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations." Bonn Declaration from the International Conference: Disasters Are Always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations. 2007. 26 Aug. 2009 ‹ http://www.disabilityfunders.org/webfm_send/6, http://www.disabilityfunders.org/emergency_preparedness ›, ‹ http://bezev.de/bezev/aktuelles/index.htm ›. Ebi, K., and G. Meehl. Heatwaves and Global Climate Change: The Heat Is On: Climate Change and Heatwaves in the Midwest. 2007. 26 Aug. 2009 ‹ www.pewclimate.org/docUploads/Regional-Impacts-Midwest.pdf ›. Elwan, A. Poverty and Disability: A Survey of the Literature. Worldbank, Social Protection Discussion Paper Series (1999): 9932. 26 Aug. 2009 ‹ http://siteresources.worldbank.org/DISABILITY/Resources/Poverty/Poverty_and_Disability_A_Survey_of_the_Literature.pdf ›. Fjord, L., and L. Manderson. “Anthropological Perspectives on Disasters and Disability: An Introduction.” Human Organisation 68.1 (2009): 64-72. Health Canada. First Annual National Health and Climate Change Science and Policy Research Consensus Conference: How Will Climate Change Affect Priorities for Your Health Science and Policy Research? Health Canada, 2001. 26 Aug. 2009 ‹ http://www.hc-sc.gc.ca/ewh-semt/pubs/climat/research-agenda-recherche/population-eng.php ›. Hemingway, L., and M. Priestley. “Natural Hazards, Human Vulnerability and Disabling Societies: A Disaster for Disabled People?” The Review of Disability Studies (2006). 26 Aug. 2009 ‹ http://www.rds.hawaii.edu/counter/count.php?id=13 ›. Holstein, J., et al. “Were Less Disabled Patients the Most Affected by the 2003 Heatwave in Nursing Homes in Paris, France?” Journal of Public Health Advance 27.4 (2005): 359-65. Intergovernmental Panel on Climate Change. Climate Change 2007: Impacts, Adaptation and Vulnerability. 2007. 26 Aug. 2009 ‹ http://www.ipcc.ch/publications_and_data/publications_ipcc_fourth_assessment_report_wg2_report_impacts_adaptation_and_vulnerability.htm ›. Intergovernmental Panel on Climate Change. “Summary for Policymakers.” Eds. O. F. Canziani, J. P. Palutikof, P. J. van der Linden, C. E. Hanson, and M.L.Parry. Cambridge, UK: Cambridge University Press, 2007. 7-22. 26 Aug. 2009 ‹ http://www.ipcc.ch/pdf/assessment-report/ar4/wg2/ar4-wg2-spm.pdf ›. Intergovernmental Panel on Climate Change. IPCC Fourth Assessment Report Working Group III Report: Mitigation of Climate Change Glossary. 2007. 26 Aug. 2009 ‹ http://www.ipcc.ch/ipccreports/ar4-wg3.htm, http://www.ipcc.ch/pdf/assessment-report/ar4/wg3/ar4-wg3-annex1.pdf ›. Leipoldt, E. “Disability Experience: A Contribution from the Margins. Towards a Sustainable Future.” Journal of Futures Studies 10 (2006): 3-15. Miller, P., S. Parker and S. Gillinson. “Disablism: How to Tackle the Last Prejudice.” Demos, 2004. 26 Aug. 2009 ‹ http://www.demos.co.uk/files/disablism.pdf ›. Nakamura, K. “Disability, Destitution, and Disaster: Surviving the 1995 Great Hanshin Earthquake in Japan.” Human Organisation 68.1 (2009): 82-88. National Council on Disability, National Council on Independent Living, National Organization on Disability, and National Spinal Cord Injury Association and the Paralyzed Veterans of America. Emergency Management and People with Disabilities: before, during and after Congressional Briefing, 10 November 2005. 26 Aug. 2009 ‹ http://www.ncd.gov/newsroom/publications/2005/transcript_emergencymgt.htm ›. National Council on Disability. National Council on Disability on Hurricane Katrina Affected Areas. 2005. 26 Aug. 2009 ‹ http://www.ncd.gov/newsroom/publications/2005/katrina2.htm ›. National Research Council of Canada. From Impacts to Adaptation: Canada in a Changing Climate 2007. 26 Aug. 2009 ‹ http://adaptation.nrcan.gc.ca/assess/2007/pdf/full-complet_e.pdf ›. Nippert, I. and G. Wolff. “Ethik und Genetik: Ergebnisse der Umfrage zu Problemaspekten angewandter Humangenetik 1994-1996, 37 Länder.” Medgen 11 (1999): 53-61. Participants of the Nuclear Winter: The Anthropology of Human Survival Session. Proceedings of the 84th American Anthropological Association's Annual Meeting. Washington, D.C., 6 Dec. 1985. 26 Aug. 2009 ‹ http://www.fas.org/sgp/othergov/doe/lanl/lib-www/la-pubs/00173165.pdf ›. Scope. “Most Britons Think Others View Disabled People ‘As Inferior’.” 2009. 26 Aug. 2009 ‹ http://www.scope.org.uk/cgi-bin/np/viewnews.cgi?id=1244379033, http://www.comres.co.uk/resources/7/Social%20Polls/Scope%20PublicPoll%20Results%20May09.pdf ›. Smit, B., et al. “The Science of Adaptation: A Framework for Assessment.” Mitigation and Adaptation Strategies for Global Change 4 (1999): 199-213. Smit, B., and J. Wandel. “Adaptation, Adaptive Capacity and Vulnerability.” Global Environmental Change 16 (2006): 282-92. Sunday Morning Herald. “Who Lives and Dies in Britain after the Bomb.” Sunday Morning Herald 1988. 26 Aug. 2009 ‹ http://news.google.com/newspapers?nid=1301&dat=19880511&id=wFYVAAAAIBAJ&sjid=kOQDAAAAIBAJ&pg=3909,113100 ›. United Nations Development Programme. Human Development Report 2007/2008: Fighting Climate Change – Human Solidarity in a Divided World. 2008. 26 Aug. 2009 ‹ http://hdr.undp.org/en/media/HDR_20072008_EN_Complete.pdf ›. Wolbring, Gregor. “Is There an End to Out-Able? Is There an End to the Rat Race for Abilities?” M/C Journal 11.3 (2008). 26 Aug. 2009 ‹ http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/57 ›. Wolbring, Gregor. “Why NBIC? Why Human Performance Enhancement?” Innovation: The European Journal of Social Science Research 21.1 (2008): 25-40.

Critique of Ability In July 2008, we could be on the eve of an enormously important shift in disability in Australia. One sign of change is the entry into force on 3 May 2008 of the United Nations convention on the Rights of Persons with Disabilities, which will now be adopted by the Rudd Labor government. Through this, and other proposed measures, the Rudd government has indicated its desire for a seachange in the area of disability. Bill Shorten MP, the new Parliamentary Secretary for Disabilities and Children’s Services has been at pains to underline his commitment to a rights-based approach to disability. In this inaugural speech to Parliament, Senator Shorten declared: I believe the challenge for government is not to fit people with disabilities around programs but for programs to fit the lives, needs and ambitions of people with disabilities. The challenge for all of us is to abolish once and for all the second-class status that too often accompanies Australians living with disabilities. (Shorten, “Address in reply”; see also Shorten, ”Speaking up”) Yet if we listen to the voices of people with disability, we face fundamental issues of justice, democracy, equality and how we understand the deepest aspects of ourselves and our community. This is a situation that remains dire and palpably unjust, as many people with disabilities have attested. Elsewhere I have argued (Goggin and Newell) that disability constitutes a systemic form of exclusion and othering tantamount to a “social apartheid” . While there have been improvements and small gains since then, the system that reigns in Australia is still fundamentally oppressive. Nonetheless, I would suggest that through the rise of the many stranded movements of disability, the demographic, economic and social changes concerning impairment, we are seeing significant changes in how we understand impairment and ability (Barnes, Oliver and Barton; Goggin and Newell, Disability in Australia; Snyder, Brueggemann, and Garland-Thomson; Shakespeare; Stiker). There is now considerable, if still incomplete, recognition of disability as a category that is constituted through social, cultural, and political logics, as well as through complex facets of impairment, bodies (Corker and Shakespeare), experiences, discourses (Fulcher), and modes of materiality and subjectivity (Butler), identity and government (Tremain). Also there is growing awareness of the imbrication of disability and other categories such as sex and gender (Fine and Asch; Thomas), race, age, culture, class and distribution of wealth (Carrier; Cole; Davis, Bending over Backwards, and Enforcing Normalcy; Oliver; Rosenblum and Travis), ecology and war (Bourke; Gerber; Muir). There are rich and wide-ranging debates that offer fundamental challenges to the suffocating grip of the dominant biomedical model of disability (that conceives disability as individual deficit — for early critiques see: Borsay; Walker), as well as the still influential and important (if at times limiting) social model of disability (Oliver; Barnes and Mercer; Shakespeare). All in all,there have been many efforts to transform the social and political relations of disability. If disability has been subject to considerable examination, there has not yet been an extended, concomitant critique of ability. Nor have we witnessed a thoroughgoing recognition of unmarked, yet powerful operations of ability in our lives and thought, and the potential implications of challenging these. Certainly there have been important attempts to reframe the relationship between “ability” and “disability” (for example, see Jones and Mark). And we are all familiar with the mocking response to some neologisms that seek to capture this, such as the awkward yet pointed “differently-abled.” Despite such efforts we lack still a profound critique of ability, an exploration of “able”, the topic that this special issue invites us to consider. If we think of the impact and significance of “whiteness”, as a way to open up space for how to critically think about and change concepts of race; or of “masculinity” as a project for thinking about gender and sexuality — we can see that this interrogation of the unmarked category of “able” and “ability” is much needed (for one such attempt, see White). In this paper I would like to make a small contribution to such a critique of ability, by considering what the concept of innovation and its contemporary rhetorics have to offer for reframing disability. Innovation is an important discourse in contemporary life. It offers interesting possibilities for rethinking ability — and indeed disability. And it is this relatively unexplored prospect that this paper seeks to explore. Beyond Access, Equity & Diversity In this scene of disability, there is attention being given to making long over-due reforms. Yet the framing of many of these reforms, such as the strengthening of national and international legal frameworks, for instance, also carry with them considerable problems. Disability is too often still seen as something in need of remediation, or special treatment. Access, equity, and anti-discrimination frameworks offer important resources for challenging this “special” treatment, so too do the diversity approaches which have supplemented or supplanted them (Goggin and Newell, “Diversity as if Disability Mattered”). In what new ways can we approach disability and policies relevant to it? In a surprisingly wide range of areas, innovation has featured as a new, cross-sectoral approach. Innovation has been a long-standing topic in science, technology and economics. However, its emergence as master-theme comes from its ability to straddle and yoke together previously diverse fields. Current discussions of innovation bring together and extend work on the information society, the knowledge economy, and the relationships between science and technology. We are now familiar for instance with arguments about how digital networked information and communications technologies and their consumption are creating new forms of innovation (Benkler; McPherson; Passiante, Elia, and Massari). Innovation discourse has extended to many other unfamiliar realms too, notably the area of social and community development, where a new concept of social innovation is now proposed (Mulgan), often aligned with new ideas of social entrepreneurship that go beyond earlier accounts of corporate social responsibility. We can see the importance of innovation in the ‘creative industries’ discourses and initiatives which have emerged since the 1990s. Here previously distinct endeavours of arts and culture have become reframed in a way that puts their central achievement of creativity to the fore, and recognises its importance across all sorts of service and manufacturing industries, in particular. More recently, theorists of creative industries, such as Cunningham, have begun to talk about “social network markets,” as a way to understand the new hybrid of creativity, innovation, digital technology, and new economic logics now being constituted (Cunningham and Potts). Innovation is being regarded as a cardinal priority for societies and their governments. Accordingly, the Australian government has commissioned a Review of The National Innovation System, led by Dr Terry Cutler, due to report in the second half of 2008. The Cutler review is especially focussed upon gaps and weaknesses in the Australian innovation system. Disability has the potential to figure very strongly in this innovation talk, however there has been little discussion of disability in the innovation discourse to date. The significance of disability in relation to innovation was touched upon some years ago, in a report on Disablism from the UK Demos Foundation (Miller, Parker and Gillinson). In a chapter entitled “The engine of difference: disability, innovation and creativity,” the authors discuss the area of inclusive design, and make the argument for the “involvement of disabled people to create a stronger model of user design”:Disabled people represented a market of 8.6 million customers at the last count and their experiences aren’t yet feeding through into processes of innovation. But the role of disabled people as innovators can and should be more active; we should include disabled people in the design process because they are good at it. (57) There are two reasons given for this expertise of disabled people in design. Firstly, “disabled people are often outstanding problem solvers because they have to be … life for disabled people at the moment is a series of challenges to be overcome” (57). Secondly, “innovative ideas are more likely to come from those who have a new or different angle on old problems” (57). The paradox in this argument is that as life becomes more equitable for people with disabilities, then these ‘advantages’ should disappear” (58). Accordingly, Miller et al. make a qualified argument, namely that “greater participation of disabled people in innovation in the short term may just be the necessary trigger for creating an altogether different, and better, system of innovation for everyone in the future” (58). The Demos Disablism report was written at a time when rhetorics of innovation were just beginning to become more generalized and mainstream. This was also at a time in the UK, when there was hope that new critical approaches to disability would see it become embraced as a part of the diverse society that Blair’s New Labor Britain had been indicating. The argument Disablism offers about disability and innovation is in some ways a more formalized version of vernacular theory (McLaughlin, 1996). In the disability movement we often hear, with good reason, that people with disability, by dint of their experience and knowledge are well positioned to develop and offer particular kinds of expertise. However, Miller et al. also gesture towards a more generalized account of disability and innovation, one that would intersect with the emerging frameworks around innovation. It is this possibility that I wish to take up and briefly explore here. I want to consider the prospects for a fully-fledged encounter between disability and innovation. I would like to have a better sense of whether this is worth pursuing, and what it would add to our understanding of both disability and innovation? Would the disability perspective be integrated as a long-term part of our systems of innovation rather than, as Miller et al. imply, deployed temporarily to develop better innovation systems? What pitfalls might be bound up with, or indeed be the conditions of, such a union between disability and innovation? The All-Too-Able User A leading area where disability figures profoundly in innovation is in the field of technology — especially digital technology. There is now a considerable literature and body of practice on disability and digital technology (Annable, Goggin, and Stienstra; Goggin and Newell, Digital Disability; National Council on Disability), however for my purposes here I would like to focus upon the user, the abilities ascribed to various kinds of users, and the user with disability in particular. Digital technologies are replete with challenges and opportunities; they are multi-layered, multi-media, and global in their manifestation and function. In Australia, Britain, Canada, the US, and Europe, there have been some significant digital technology initiatives which have resulted in improved accessibility for many users and populations (Annable, Goggin, and Stienstra; National Council on Disability) . There are a range of examples of ways in which users with disability are intervening and making a difference in design. There is also a substantial body of literature that clarifies why we need to include the perspective of the disabled if we are to be truly innovative in our design practices (Annable, Goggin and Stienstra; Goggin and Newell, “Disability, Identity and Interdependence”). I want to propose, however, that there is merit in going beyond recognition of the role of people with disability in technology design (vital and overlooked as it remains), to consider how disability can enrich contemporary discourses on innovation. There is a very desirable cross-over to be promoted between the emphasis on the user-as-expert in the sphere of disability and technology, and on the integral role of disability groups in the design process, on the one hand, and the rise of the user in digital culture generally, on the other. Surprisingly, such connections are nowhere near as widespread and systematic as they should be. It may be that contemporary debates about the user, and about the user as co-creator, or producer, of technology (Haddon et al.; von Hippel) actually reinstate particular notions of ability, and the able user, understood with reference to notions of disability. The current emphasis on the productive user, based as it is on changing understandings of ability and disability, provides rich material for critical revision of the field and those assumptions surrounding ability. It opens up possibilities for engaging more fully with disability and incorporating disability into the new forms and relations of digital technology that celebrate the user (Goggin and Newell, Digital Disability). While a more detailed consideration of these possibilities require more time than this essay allows, let us consider for a moment the idea of a genuine encounter between the activated user springing from the disability movement, and the much feted user in contemporary digital culture and theories of innovation. People with disability are using these technologies in innovative ways, so have much to contribute to wider discussions of digital technology (Annable, Goggin and Stienstra). The Innovation Turn Innovation policy, the argument goes, is important because it stands to increase productivity, which in turn leads to greater international competitiveness and economic benefit. Especially with the emergence of capitalism (Gleeson), productivity has strong links to particular notions of which types of production and produce are valued. Productivity is also strongly conditioned by how we understand ability and, last in a long chain of strong associations, how we as a society understand and value those kinds of people and bodies believed to contain and exercise the ordained and rewarded types of ability, produce, and productivity. Disability is often seen as antithetical to productivity (a revealing text on the contradictions of disability and productivity is the 2004 Productivity Commission Review of the Disability Discrimination Act). When we think about the history of disability, we quickly realize that productivity, and by extension, innovation, are strongly ideological. Ideological, that is, in the sense that these fields of human endeavour and our understanding of them are shaped by power relations, and are built upon implicit ‘ableist’ assumptions about productivity. In this case, the power relations of disability go right to the heart of the matter, highlighting who and what are perceived to be of value, contributing economically and in other ways to society, and who and what are considered as liabilities, as less valued and uneconomical. A stark recent example of this is the Howard government workplace and welfare reforms, which further disenfranchised, controlled, and impoverished people with disability. If we need to rethink our ideas of productivity and ability in the light of new notions of disability, then so too do we need to rethink our ideas about innovation and disability. Here the new discourses of innovation may actually be useful, but also contain limited formulations and assumptions about ability and disability that need to be challenged. The existing problems of a fresh approach to disability and innovation can be clearly observed in the touchstones of national science and technology “success.” Beyond One-Sided Innovation Disability does actually feature quite prominently in the annals of innovation. Take, for instance, the celebrated case of the so-called “bionic ear” (or cochlear implant) hailed as one of Australia’s great scientific inventions of the past few decades. This is something we can find on display in the Powerhouse Museum of Technology and Design, in Sydney. Yet the politics of the cochlear implant are highly controversial, not least as it is seen by many (for instance, large parts of the Deaf community) as not involving people with disabilities, nor being informed by their desires (Campbell, also see “Social and Ethical Aspects of Cochlear Implants”). A key problem with the cochlear implant and many other technologies is that they are premised on the abolition or overcoming of disability — rather than being shaped as technology that acknowledges and is informed by disabled users in their diverse guises. The failure to learn the lessons of the cochlear implant for disability and innovation can be seen in the fact that we are being urged now to band together to support the design of a “bionic eye” by the year 2020, as a mark of distinction of achieving a great nation (2020 Summit Initial Report). Again, there is no doubting the innovation and achievement in these artefacts and their technological systems. But their development has been marked by a distinct lack of consultation and engagement with people with disabilities; or rather the involvement has been limited to a framework that positions them as passive users of technology, rather than as “producer/users”. Further, what notions of disability and ability are inscribed in these technological systems, and what do they represent and symbolize in the wider political and social field? Unfortunately, such technologies have the effect of reproducing an ableist framework, “enforcing normalcy” (Davis), rather than building in, creating and contributing to new modes of living, which embrace difference and diversity. I would argue that this represents a one-sided logic of innovation. A two-sided logic of innovation, indeed what we might call a double helix (at least) of innovation would be the sustained, genuine interaction between different users, different notions of ability, disability and impairment, and the processes of design. If such a two-sided (or indeed many-sided logic) is to emerge there is good reason to think it could more easily do so in the field of digital cultures and technologies, than say, biotechnology. The reason for this is the emphasis in digital communication technologies on decentralized, participatory, user-determined governance and design, coming from many sources. Certainly this productive, democratic, participatory conception of the user is prevalent in Internet cultures. Innovation here is being reshaped to harness the contribution and knowledge of users, and could easily be extended to embrace pioneering efforts in disability. Innovating with Disability In this paper I have tried to indicate why it is productive for discourses of innovation to consider disability; the relationship between disability and innovation is rich and complex, deserving careful elaboration and interrogation. In suggesting this, I am aware that there are also fundamental problems that innovation raises in its new policy forms. There are the issues of what is at stake when the state is redefining its traditional obligations towards citizens through innovation frameworks and discourses. And there is the troubling question of whether particular forms of activity are normatively judged to be innovative — whereas other less valued forms are not seen as innovative. By way of conclusion, however, I would note that there are now quite basic, and increasingly accepted ways, to embed innovation in design frameworks, and while they certainly have been adopted in the disability and technology area, there is much greater scope for this. However, a few things do need to change before this potential for disability to enrich innovation is adequately realized. Firstly, we need further research and theorization to clarify the contribution of disability to innovation, work that should be undertaken and directed by people with disability themselves. Secondly, there is a lack of resources for supporting disability and technology organisations, and the development of training and expertise in this area (especially to provide viable career paths for experts with disability to enter the field and sustain their work). If this is addressed, the economic benefits stand to be considerable, not to mention the implications for innovation and productivity. Thirdly, we need to think about how we can intensify existing systems of participatory design, or, better still, introduce new user-driven approaches into strategically important places in the design processes of ICTs (and indeed in the national innovation system). Finally, there is an opportunity for new approaches to governance in ICTs at a general level, informed by disability. New modes of organising, networking, and governance associated with digital technology have attracted much attention, also featuring recently in the Australia 2020 Summit. Less well recognised are new ideas about governance that come from the disability community, such as the work of Queensland Advocacy Incorporated, Rhonda Galbally’s Our Community, disability theorists such as Christopher Newell (Newell), or the Canadian DIS-IT alliance (see, for instance, Stienstra). The combination of new ideas in governance from digital culture, new ideas from the disability movement and disability studies, and new approaches to innovation could be a very powerful cocktail indeed.Dedication This paper is dedicated to my beloved friend and collaborator, Professor Christopher Newell AM (1964-2008), whose extraordinary legacy will inspire us all to continue exploring and questioning the idea of able. 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