Dr. Gregor Wolbring Dept of Community Health Science

1. Science and technology enabled changes in ability expectations: Challenges for successful aging of people with and without so called impairments Dr. Gregor Wolbring Dept of Community Health Science Community Rehabilitation and Disability Studies University of Calgary FICCDAT June 6th 2011 gwolbrin@ucalgary.ca

2. The Situation • The population of the elderly with and without so called impairments is increasing due to various factors and they live longer. • At the same time science and technology advances change societal ability expectation and what it means to be medical and socially healthy, how to perform health care and how to age successfully. • This paper highlights numerous challenges arising from science and technology enabled changes in ability expectations for successful aging of people with and without so-called impairments.

3. The Situation • Canada is an international leader in generating and applying new and emerging health sciences and technologies (HST). • HST are seen as fundamentally transforming the meaning of health, health care and rehabilitation [2;3] and their delivery [2;4-6]. • Ableism is one dynamic through which advances in HST influence meaning of health, healthcare and rehabilitation, direction of health research and policy and scope of health care and rehabilitation.

4. Ableism CNS-ASU research, education and outreach activities are supported by the National Science Foundation under cooperative agreement #0531194.

5. Ableism as used within disability studies • The term ableism evolved from the civil rights movements in the United States and Britain during the 1960s and 1970s (2006) • It questions the ableism that privileges ‘species -typical abilities’ while labelling ‘sub species-typical abilities’ as deficient, as impaired and undesirable often with the accompanying disablism the often discriminatory, oppressive, and non-supportive “we-other” behaviour

6. Ableism • Individuals, households, communities, groups, sectors, regions, countries and cultures cherish and promote certain abilities while viewing others as non-essential (favoritism of abilities). • Favoring certain abilities often morphs into ableism where one not only cherishes certain abilities but where one sees certain abilities in oneself or others as essential and labels real or perceived deviation from or lack of these essential abilities as problematic. • Ableism leads to an ability based and ability justified understanding of oneself, one’s body and one’s relationship with others of one’s species, other species and one’s environment. CNS-ASU research, education and outreach activities are supported by the National Science Foundation under cooperative agreement #0531194.

7. Ableism • Ableism is one of the most societal entrenched and accepted isms and one of the biggest enabler for other isms • Sexism • Racism/Ethnicism/ • Caste-ism • Age-ism • Ableism driven Speciesism • Consumerism • Productivity-ism • Competitiveness-ism Wolbring (2010) Nanoscale science and technology and social cohesion for International Journal of Nanotechnology Int. J. Nanotechnol., Vol. 7, Nos. 2/3, 2010 pp 155-173

8. Impact of Ableism • Ableism and advances in HST affect at least five discourses that in turn influence health care, health science and rehabilitation policy and scholarship which in turn affect successful aging of people with and without so called impairments. • One discourse being the cultural understanding of health and being healthy and how to age successfully, • The second discourse being around privacy linked to sensor generated and self and remotely analyzed health data • The third discourse being around the push for patient-driven health care and research models, • The fourth being around health literacy • and the fifth being around the elimination of the health care professional whether through the use of nursing robots or the movement towards a ‘quantified self’ (where people diagnose themselves).

9. Issues raised • These discourses raise various issues for successfully aging in general and successful aging for people with so called impairments in particular. • These developments generate new issues for elderly with disabilities as they presuppose certain physical and intellectual abilities. • Elderly with disabilities might not be able to receive the care they need • a) because the HST product developed might simply not be physically accessible therefore preventing the elderly with disabilities of using the HST product and • b) because of emotional and intellectual barriers that prevent the interaction with and use of the HST product.

10. Ageism and Youthism: two forms of ableism • With an increase in percentage of elderly people in the countries that fund most of global research including health and rehabilitation research it seems reasonable to expect a demand for research priority that help the elderly to have a better life, a longer life without impairment, a longer life with the abilities of the youth. Indeed increasingly we see the elderly with age related deteriorations to exhibit youthism asking for restoration of abilities of their youth. • Increasingly a narrative of a “better life” in old age is appearing that believes in retaining the various abilities one had when one was younger (youthism). • Youthism might play into a preference for beyond species-typical interventions and a change in the meaning of health. It expects the abilities of youth to be extended to the elderly.

11. Ageism and Youthism: two forms of ableism • Ageism so far is mostly the negative treatment of the elderly that do not have the have the abilities of their youth anymore. Elderly might be seen as costing too much money as not having a role to play in society. This form of ageism very likely will impact mostly the elderly that exhibit impairments. • A new form of Ageism on the horizon is the negative sentiment towards the elderly who might try to retain the abilities of the youth. This might be seen as problematic by the youth as they depend on the elderly to move on to vacate space for the young in employment and other areas. • Furthermore, youth might not be willing to pay for the cost (monetary, emotional and time) of care of the impaired elderly. This in turn might further the move of the elderly to stay as young ability-wise as possible. • Youthism/ ageism will be an increasing influence on the choices made by funders, policy makers and the public today as to health, healthcare and rehabilitation and will impact especially how people who are seen to have impairments age.

12. The Challenge of Science and Technology enabled move beyond the normal •  So far, the very meaning of health and therefore treatment and rehabilitation is benchmarked to the normal or species typical body. Based on the species related genetic code we expect certain abilities in members of a species; we expect humans to walk but not to fly but a bird we expect to fly. If the bird cannot fly, we perceive it as impaired and if humans cannot walk, we perceive them as impaired. • However, science and technology advances increasingly allow the wearer to outperform the species-typical body.

13. The Challenge of Science and Technology enabled move beyond the normal • The patient is increasingly viewed as a consumer Many who want to obtain ‘enhancements’ especially the ones that cannot afford enhancements feel they need to involve the health system in order to obtain the enhancement. • Enhancements might become labelled as a “medical necessity”. They will try to put forward a health care consumer model that allows for enhancements to be labelled as health consumer products. They might lobby for the field of enhancement medicine and enhancement version of health where one is healthy only if one received the newest upgrade to ones body and rehabilitation which will be about helping someone gaining optimal body abilities which includes beyond species-typical abilities

14. The Challenge of do it yourself • Health clients increasingly want to be in the driver’s seat with their health interventions, hence the concept of patient driven health care. We see movements towards people diagnosing themselves and participatory medicine with an active HST market that makes user generated data and consumer personalized medicine [64-69] possible. Home care will become increasingly important HST such as sensors and advances in self diagnostic technology enable the home to be part of patient-driven health care model. Linked to the move towards self diagnostics is the move by people to obtain health information themselves especially online.

15. The Challenge of do it yourself • A recent study found that “Populations with serious health needs and those facing significant barriers in accessing health care in traditional settings turn to the Internet for health information.” Indeed people can increasingly self diagnose various aspects of their ‘health’. “Approximately forty percent of respondents with Internet access reported using the Internet to look for advice or information about health or health care in 2001” Eighty percent of American internet users, or some 113 million adults, have searched for information on at least one of seventeen health topics. • Movements appearing are: quantified self movement, participatory medicine movement, pink army,

16. The Challenge of do it yourself • This move poses challenges to people with disabilities elderly or otherwise given that many of the technologies employed are not accessible (physical or intellectually) to them. It poses the question who will be involved to perform the task of diagnostics and information activities done before by health professionals.

17. Conclusion • There is a the need for revamping the discourses of where we want to go and how we want to do this. This has to happen in a fashion that involves people of all ages and all abilities to come up with a new generational contract.

18. Conclusion • Mainstreaming displaced people with disabilities into the recovery efforts after a natural disaster maximizes the achievement of medical and social health of people with disabilities and public health in general. • If this can happen in Haiti, the country will be cited as a best practices case study of how to deal with people with disabilities after a disaster.

20. Thank You to • My students, my academic colleagues, and the disabled people rights movement . • Three sources that teach me a lot. • And you the audience