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Disability and Knowledge on the Road Ahead – Towards new Agendas

Simo Vehmas Simo.vehmas@jyu.fi. Disability and Knowledge on the Road Ahead – Towards new Agendas. Topical starting points for disability research. Economic downfall and its effect on disabled people and their services UN Convention on the rights of persons with disabilities (CRPD)

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Disability and Knowledge on the Road Ahead – Towards new Agendas

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  1. Simo Vehmas Simo.vehmas@jyu.fi

    Disability and Knowledge on the Road Ahead – Towards new Agendas

  2. Topicalstartingpoints for disabilityresearch Economic downfall and its effect on disabled people and their services UN Convention on the rights of persons with disabilities (CRPD) WHO World report on disability Capabilities approach
  3. CRPD ‘Recognizing that 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 effectiveparticipation in society on an equal basis with others’ ‘Recognizing further the diversity of persons with disabilities’ ‘Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basiswithothers.’  commitment to an ontology that acknowledges both the physical and social dimensions of disability
  4. WHO Report A global picture (e.g., prevalence, environment, poverty, costs) Health care Rehabilitation Assistance and support Enabling environments Education Work and employment
  5. Philosophy and itsuses in understandingdisability Examination of the boundaries of human thought by means of examples and counter-examples Logical argumentation & the analysis and clarification of concepts Question and examine essential concepts and conceptions in DS, their rational credibility, logical tenability and normative soundness
  6. The relevance of politicalphilosophy what would institutionally be the best way to arrange social life, and how can and should these arrangements be justified? the meaning and significance of, for example, liberty, justice and equality
  7. Capabilitiesapproach A theoreticalframeworkthataims to set a standard for social justice Equality and justiceshouldbeevaluated in terms of capabilities the actualfreedom to pursue and excercisethings and activitiesthataresignificantregardinghumanwell-being Societyhas a duty to ensure a minimumlevel of eachcentralcapabilitynecessary for humandignity and well-being minimumlevelmustbedefined, to an extent, universally and objectivelybecausepeoplemayhaveaccustommedthemselves to discrimination adjustedtheirpreferences to whattheycanachieve in a givensituation
  8. Premises of justice Aristotelianview of humanity: wearebiological and social animals, not just rationalbutcorporealbeings as well Corporeality dependency  dependency as much a humancharacter as independence Thus, weareall, at somepoints of ourlives, dependent on otherpeople’scare itbenefits us all to provideeveryonewith the centralcapabilities The aim of social arrangements is to enable a goodhuman life Capabilities and theirrealisationrelate to an individual’sfeatures acknowledgement of humandiversity
  9. The centralhumancapabilities Life Bodilyhealth Bodilyintegrity Senses, imagination, and thought Emotions Practicalreason Affiliation Otherspecies Play Controloverone’senvironment
  10. Applyingcapabilitiesapproach The Equality and Human Rights Commission (UK) hasdeveloped a way of measuringequality in terms of CA 1. Life 2. Health 3. Physicalsecurity 4. Legal security 5. Education and learning 6. Standard of living 7. Productive and valuedactivities 8. Individual, family and social life 9. Identity, expression and self-respect 10. Participation, influence and voice
  11. Ethics Normativeethics: general study of goodness and right action Whatkinds of beingsshouldwebelike? Howarewe to live? Basis for normativerules and jurisdiction Producingmentaltools to guidemoralreasoning Understanding the nature of right and wrongactions, good and badpersons Moralpsychology; moralresponsibility
  12. Disability as an ethicalconcept Whatkinds of beingshumansought to be (mentally and physically) Howsocietyought to beconstructed An undesirablestate of functioningorbeing of an individual Lackingabilitiesorpossibilitiesthatcouldcontribute to one’swell-beingor social adequacy Individualmodels: individual’sinsufficientabilitiestragedy Social models: undesirablestatearisingfromunjust social arrangements
  13. Disability as an instrumentaldisadvantage Thingsthatenhancehumanwell-being “the more limited an individual’s capacities are, the more restricted his or her range of well-being will be … the profoundly cognitively impaired are incapable, for example, of deep personal and social relations, creativity and achievement, the attainment of higher forms of knowledge, aesthetic pleasures, and so on” (MacMahan 1996: 7-8) The use of empirical data directs normative conclusions
  14. Disability as an instrumentaldisadvantage The significance of contextual factors The significance of impairments Well-being essentially a subjective concept; it unavoidably concerns what is good or bad for the subject in question
  15. Disability as an intrinsicdisadvantage Things that are intrinsically valuable – in a way that needs no further explanation or justification  Happiness? Subjective vs. objective criteria
  16. Disability as an intrinsicdisadvantage Opportunities? Harmedconditionsthatsomeonehas a strongrationalpreferencenot to be in “The intellectually disabled do miss out on some dimensions of experience which are closed to them in the way that music is closed to the deaf. And this is a disability.” (Harris 2001: 384) The more opportunities, the better? “sources of shared experience and social interaction … our social life and culture are built around some of those functions” (Wasserman 1996: 133) A disadvantage but disadvantageous on balance?
  17. Conclusion Our research agenda should be based on Timely social, political and private issues Plurality of methods and theories Political and ethical engagement Not just to understand things better, but also, to make things better
  18. 1. The capability to be alive including, for example, being able to: avoid premature mortality through disease, neglect, injury or suicide; and be protected from being killed or murdered.
  19. 2. The capability to be healthy including, for example, being able to: attain the highest possible standard of physical and mental health, including sexual and reproductive health Prioritising in healthcare? Disability and parenthood? access to timely and impartial information about health and healthcare options be free from the stigmatisation associated with some health conditions maintain a healthy lifestyle including exercise, sleep and nutrition
  20. 3. The capability to live in physical security including, for example, being able to: be free from violence including sexual and domestic violence and violence based on who you are be free from cruel, inhuman or degrading treatment or punishment be protected from physical or sexual abuse go out and use public spaces safely and securely without fear
  21. 4. The capability of knowing you will be protected and treated fairly by the law including, for example, being able to: know you will be treated with equality and non-discrimination before the law have the right to a fair trial have access to affordable and high-quality information and advocacy as necessary own property and financial products including insurance, social security, and pensions in your own right
  22. 5. The capability to be knowledgeable, to understand and reason, and to have the skills to participate in society including, for example, being able to: attain the highest possible standard of knowledge, understanding and reasoning be fulfilled and stimulated intellectually develop the skills for participation in productive and valued activities, including parenting learn about a range of cultures and beliefs and acquire the skills to participate in a diverse society access education, training and lifelong learning that meets individual needs access information and technology necessary to participate in society
  23. 6. The capability to enjoy a comfortable standard of living, with independence and security including, for example, being able to: enjoy an adequate and secure standard of living (e.g. nutrition, clothing, housing, social security, social services and utilities), and being cared for and supported when necessary get around inside and outside the home, and to access transport and public places live with independence, dignity and self-respect have choice and control over where and how you live have control over personal spending share in the benefits of scientific progress including medical advances and information and technology
  24. 7. The capability to engage in productive and valued activities including, for example, being able to: have a decent paid job, with support where necessary care for others, including children and parents do something useful and have the value of your work recognised even if unpaid have rest and leisure not be forced to work in a particular occupation or without pay not be prevented from working in a particular occupation without good reason
  25. 8. The capability to enjoy individual, family and social life including, for example, being able to: develop as a person, including self-identity formulate and pursue goals and objectives for yourself develop and maintain self-respect, self-esteem and self-confidence have a private life and some personal space, including protection of personal data know that someone will look out for you form intimate relationships, friendships and a family, and be confident that your primary relationships will be treated with dignity and respect enjoy special support during pregnancy, maternity, paternity and adoption
  26. 9. The capability of being and expressing yourself, and having self-respect including, for example, being able to: have freedom of conscience, belief and religion have freedom of cultural identity and expression of gender communicate, including using information and communication technologies, and use your own language engage in cultural practices, in community with other members of your chosen group or groups have self-respect live without fear of humiliation, harassment, or abuse based on who you are
  27. 10. The capability to participate in decision-making, have a voice and influence including, for example, being able to: participate in decision-making and make decisions affecting your own life independently participate in democratic free and fair elections participate in the local community form and join civil organisations and solidarity groups, including trade unions
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