Universal Design and Evalua2on. 4. Ethical Considera2ons

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1 Universal Design and Evalua2on 4. Ethical Considera2ons

2 What is Ethics? Moral Philosophy (not necessarily connected to legal aspects) Human behaviour No fixed rules

3 What is happening here?

4 Why Ethics? Ethics in research Protec2ng subjects Good research Ethics in Disability Research Sensi2ve topics Difficult situa2on Role of research(er)

5

6 Ethics rules good behaviour Saving other people at the risk of ones own Not striving for maximum personal gain Trea2ng people well Doing beoer than just being legal

7 Unethical behaviour?

8 Unethical Society?

9 Ethics vs. Design Universal Design à Ethical perspec2ve? What is the ethical part of UD? Can there be unethical parts? How can we measure the Ethics? Iordanis Kavathazopoulus

10 Ethical issues We and them Subject/informant selec2on The purpose of research/development

11 We and Them Social construc2on Grouping of people a natural process Our tribe, and the others Survival issue Destruc2ve in modern society Immigra2on problems (assimila2on) Youth vs. Old people Men vs. women S2gma2zed people vs. us Unavoidable?

12 Universal Design Them = us How? Iden2fica2on Ac2on research Ethnographic research methods (living with the subjects of study)

13 Anonymity Make sure that informa2on cannot be traced back De- iden2fy ques2onnaires If you need to use an iden2fyable statement Check with the informant

14 Recording Keep recording open and transparent No hidden equipment Ask permission before recording

15 Tes2ng Subjects? Tes2ng implies that the subjects are different from us Observing others Do we need to test in order to design? Interviewing?

16 Selec2on of informants Who will we use as informants? People? Groups of impaired people? Wheel chair users Blind people Perspec2ve becomes impairment before person Can this be avoided?

17 Study à S2gma How can we perform ethically correct studies? What IS an ethically correct study? How can we guarantee: Privacy Integrity Trust (no misuse of material)

18 Privacy What is privacy? To respect the informants personal limits To regard the informant as a person, with a right

19 Integrity Respec2ng the personal space Respec2ng the individual Not view him/her as a subject! Taking the perspec2ve of the informant

20 Unexpected topics Many impairments are complex Spinal injuries may affect: legs bodily func2ons circulatory systems In an interview we have to be prepared for this!

21 The saviour syndrome Researchers and developer are not

22 The saviour syndrome Researchers and developer are not Guardian angels!

23 The saviour syndrome Make sure that your plan is clear Make sure that your goal with the study is clear from the beginning Why are we inves2ga2ng this? What do we hope to achieve? Are you going to save the person in the wheel chair? Don t!

24 The saviour syndrome There is always a risk that we take on a saviour abtude: I will help this poor fellow The poor man/woman does not know what he/ she can get I know what he/she needs Cf. The picalls previous lecture

25 Change Ethical discussion: We should not change the life for someone with an impairment We should provide the means for him or her to change their life Technical solu2on to human problem?

26 Why do Universal design? From an ethical perspec2ve: Provide possibili2es Free the mind Support development From a prac2cal perspec2ve Find new possibili2es for the individual Delimit the delimita2ons

27 Why not to do UD! To show people with impairments how things should be To impose our view/our needs on their reality To solve non- problems To replace working solu2ons To pity the people with impairment

28 Kiwi

29 Our dreams Are not everybodys dream And you might not understand someone elses dream But you might make them come true (like facilita2ng for the kiwi bird to fly)

30 Our dreams Are not everybodys dream And you might not understand someone elses dream But you might make them come true (like facilita2ng for the kiwi bird to fly)

31 Reflec2on How can we ensure Ethical Thinking in Disability Research and Universal Design? And what should that be??

32 Project Project will be presented next week: November 16 th, at the lecture You should start forming groups of two persons Crosscultural? New persons? Try!

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