Enabling the development of optimum personal autonomy

1. Enabling the development of optimum personal autonomy Deb Viney, Diversity Advisor, SOAS, University of London Stockholm, May 2014 Stockholm May 2014

2. An introduction to Deb • Psychology graduate (Portsmouth, 1989) & graduate member of the British Psychological Society • Junior health service technician in the Wessex Neurological Centre • Junior medical researcher (haemophilia & HIV) • Part time lecturer (teaching psychology at all levels from age 16 to post-graduate plus counselling skills & ethics) • Disability Service Co-ordinator at University of Southampton • Diversity Advisor at the School of Oriental & African Studies • Founding member of the National Association of Disability Officers (now NADP) and long serving member of the Board of Directors • and a 16 year old single parent … Stockholm May 2014

3. Core value: optimising personal autonomy • Ultimately the aim of a disability practitioner should be tofacilitate disabled student(s) in developing optimal personal autonomy – we are effectively working towards putting ourselves out of a job!!! • Inevitably, for some individuals there cannot be total independence, so we must encourage the person to seek the greatest independence they can achieve – which should mean making life choices for themselves and often involves managing their own support workers and managing their access to other forms of support. • It would be a “disservice” to not support the development of each student’s personal autonomy. Stockholm May 2014

4. student • their parents • their teachers • their friends • academics • other students • in-house support workers • out-sourced support workers & their managers • line manager & senior management Managing expectationsPerhaps the greatest part of the job of a disability advisor is managing the expectations of others: Stockholm May 2014

5. Examples of expectations • A disabled student may have particular beliefs about who should be their support worker … or about whose job it is to manage the work of their support worker … • their parents may have expectations about how their “child” will be supported (e.g. 5pm Friday phone call “who will be going to the Halls to take [newly arrived blind student] shopping for food?”). • [school] teachers may make inaccurate positive or negative assumptions about the support available for disabled students in Higher Education. • the friends of a disabled student may assume they have a responsibility to advocate on the disabled student’s behalf. Stockholm May 2014

6. academics may assume a physically disabled student will need additional academic support … • other students may assume they have a right to know about / discuss the details of a classmate’s impairment • in-house support workers can sometimes believe that ensuring the quality of what they do is someone else’s role … • out-sourced support workers & their managers can make assumptions about whose responsibility it is to undertake certain aspects of a student’s support (e.g. assuming that the Disability Advisor will act as a “go between” when a mentor needs to communicate with an academic) • line manager & senior management very often have inaccurate beliefs about what a Disability Advisor’s role should / does entail. Stockholm May 2014

7. Disability practitioners are not immune … • We can make assumptions about what a specific course (or academic activity within a course) entails… when perhaps we should ask more questions of the academics or even ask to observe an activity … • We could believe that academics know nothing about disability issues … but it is always possible the academic has personal experience or a family member with a similar impairment … • We can sometimes believe we always know best and that it is our role to persuade students to accept our advice … when perhaps instead we should present the arguments for and against a particular action and allow the student(s) to decide for themselves … Stockholm May 2014

8. Be wary of assumptions • about the individual student’s level of intelligence and likely achievements (and also about the likely achievements of the group of disabled students) • about what the individual student’s needs may be in a particular situation (and about the needs of disabled students “at large”) • about what form(s) of support the individual may prefer (and what support disabled students in general will prefer) • about what “levelling the playing field” means in an individual case (and in general terms) • about our own level of expertise … is there a risk that sometimes our confidence sometimes exceeds our competence? Stockholm May 2014

9. Persuasive communication One of the key skills for any Disability Advisor: • Persuasion is a form of social influence. It is the process of guiding people toward the adoption of an idea, attitude, or action by rational and symbolic (though not only logical) means. It is a problem-solving strategy, and relies on "appeals" rather than force. • Dissuasion is the process of convincing someone not to believe or act on something. • Persuasion is often confused with manipulation, which is the act of guiding another towards something that is not in their best interest by subverting their thought processes. Persuasion is meant to benefit all parties in the end. http://psychology.wikia.com/wiki/Persuasive_communication Stockholm May 2014

10. Attitude change through persuasive communication based on the work of Carl Hovland (Yale University, 1950s & 1960s) 1. Target Characteristics: the characteristics of the person who receives and processes a message. E.g. highly intelligent people (such as academics) are less likely to be convinced by a one-sided argument. 2. Source Characteristics: the major ones are expertise, trustworthiness and interpersonal attraction or attractiveness. The credibilityof a perceived message has been found to be a key variable (Hovland & Weiss, 1951). E.g. this is one of the reasons professionalisation of the Disability Advisor role is positive, since it should encourage others to see us as experts. 3. Message Characteristics: the nature of the message has a role in persuasion. E.g. presenting both sides of a story may be useful in changing attitudes. Stockholm May 2014

11. Attitude change (continued) 4. Cognitive Routes: a message can appeal to an individual's own cognitive evaluation to help change an attitude. • In the central route to persuasion the individual is presented with the data and motivated to evaluate the data and arrive at an attitude changing conclusion. E.g. If meeting resistance to making adjustments for Medical students with dyslexia ,a Disability Advisor can present the genetic / biological evidence for dyslexia to the Medical School, the academics there can evaluate that evidence for themselves … • In the peripheral route to attitude change, the individual is encouraged to not look at the content but at the source. This is commonly seen in modern advertisements that feature celebrities or experts such as doctors are used. Stockholm May 2014

12. The six “weapons of influence”(based on the work of Robert Cialdini, 2001) Reciprocation- people like to “return a favour”. If a Disability Advisor can help an admissions tutor to recruit a prospective student with excellent grades; or help a Course Co-ordinator to obtain the necessary approval to start a new programme, then later the academics may be more willing to be persuaded (e.g.) to make an unusual reasonable adjustment. Commitment and Consistency- Once people commit to what they think is right, orally or in writing, they are more likely to honour that commitment, even if the original incentive or motivation is subsequently removed. E.g. an academic department which has pre-agreed a set of reasonable adjustments for a disabled student is likely to honour that commitment, especially once the student has arrived on their course. Stockholm May 2014

13. Social Proof - People will do things that they see other people are doing. For example: if the Disability Advisor can say “the Chemistry department had a blind student who successful completed his Bachelor’s and Master’s degrees” other academic departments may find it harder to refuse to make reasonable adjustments for other blind students. • Authority- People will tend to obey authority figures, even if they are asked to perform objectionable acts. For example if a very senior academic (Professor, Deputy Vice Chancellor, Vice Chancellor) will support an unusual reasonable adjustment, other academics are more likely to agree to it. Stockholm May 2014

14. Liking - People are easily persuaded by other people whom they like. E.g. a likeable disabled student will be more likely to obtain support for their reasonable adjustments from academics; also a current student known to the academics is less likely to have a request refused than a prospective disabled student the academics have yet to meet. • Scarcity - Perceived scarcity will generate demand. E.g. disabled students told there are only a limited number of accessible parking bays on campus may be more likely to apply immediately for a parking permit. Stockholm May 2014

15. Tensions and power relationships – the disability practitioner’s perspective • Academic standards must be protected - “dumbing down” is not an option … and yet some reasonable adjustments may push the boundary between an appropriate adjustment to the academic assessment process and the academic standard to be achieved. • Academic freedom may occasionally limit the recommendations we make (e.g. a colleague who lectures “off the cuff” might not need to be asked to change their whole teaching style, recommendations can be adjusted to take that into account) • Academics can sometimes believe that they are “not allowed” to challenge our recommendations about the arrangements for disabled students. • A student may occasionally become the rope in a tug of war, especially between funding body and institution where there is negotiation about who pays for which aspects of support. Stockholm May 2014

16. Examples of issues around autonomy (1) Preparation for study in Higher Education (for any student) is much wider than just the academic arrangements e.g. life skills such as budgeting, using a washing machine, some basic cooking, etc.. For a disabled student it • means ensuring the disabled student either has those life skills which they are capable of developing or has in place a support arrangement to meet those broader needs. • may include an adjustment to (perhaps even re-negotiation of) the relationship between parent(s) and student • can force the development of autonomy in areas where other students seldom need to think about it (e.g. managing personal health and treatments) Stockholm May 2014

17. Examples of issues around autonomy (2) The importance of a fully independent assessment of needs (i.e. independent of the institution and the funding body but also of the suppliers of equipment / support and of the academic department and of the Disability Advisors – the assessor should have absolutely no vested interest in the student’s current or future support arrangements) • Helping the student to understand the distinction between needs and wants • Helping the student to recognise and further develop personal preferences (see below) • Empowering and informing the student about options which may be open to them Stockholm May 2014

18. Examples of issues around autonomy (3) What are the limits of confidentiality? Disability Advisors cannot and should not promise complete confidentiality, we must consciously acknowledge the limits of the confidentiality we can offer: • We may be able to keep information confidential from academic colleagues (on request) provided there are no health and safety implications for staff or other students from such a request However there is: • a duty to disclose terrorist activity or serious criminal activity to the relevant authorities • a duty of care, which occasionally overrides the duty of confidentiality if the person is a danger to themself or to others (this could be a physical or psychological or emotional or financial risk) Stockholm May 2014

19. Examples of issues around autonomy (4) Independent choice issues can manifest in various ways: • Is the student seeking age appropriate activities, making the most of their opportunities and choices? • If not, it may be a role for the Disability Advisor to introduce some ideas e.g. prospective students who have never left home alone • Choice requires independence of thought; it’s not about what the parents want; it’s not what teachers want; it’s what the student wants! In a few cases the student may never have given that any thought – perhaps because they are so used to parents taking decisions for them, perhaps for other reasons. e.g. advised one struggling student what her options could be outside of University … • What fosters independent thinking? Stockholm May 2014

20. Examples of issues around autonomy (5) Occasionally a student or their parents will seek to “bring forward” a familiar support person from an earlier educational setting. This can be tricky, for a number of reasons • different relationship in HE; less “support”, more facilitation. • appropriate professionalization of support staff and of their relationships with students. • the SW may not have the appropriate skills to work in an HE setting. • SWs can accidentally act as a barrier between the disabled student and their peers. Stockholm May 2014

21. Examples of issues around autonomy (6) “How can you assure me that my daughter will not be bullied / socially excluded at your University?” Stockholm May 2014

22. Examples of issues around autonomy (7) [where a choice is possible] which is “better”: Assistive Technology [AT] or human support? • This will depend on many factors, including the student’s personality and some situational variables. • However for some students the key issue is about how visible or invisible are the proposed support mechanisms? D. Viney Stockholm May 2014

23. Examples of issues around autonomy (8) Why can’t you just get another student to help? • What about the impact of helping on that student’s own studies? • Who tells them if their notes are not good enough? Would you want to have to tell a classmate that? • What if the student-helper fails to turn up without any warning? • Who is responsible for monitoring the quality of the student-helper’s work? Stockholm May 2014

24. Examples of issues around autonomy (9) Having those difficult conversations: • Planning ahead to optimise choice during a psychotic break • Maintaining choice into terminal illness • What do you say to a student when their classmates or flatmates complain that they smell? Stockholm May 2014

25. And it’s worth remembering … A lesson from my first International Disability in HE conference: There is a huge amount we can do to facilitate our disabled students’ studies, but in the end ….they retain the right to fail D.Viney Stockholm May 2014

26. References Cialdini, R. B. (2001). Influence: Science and practice (4th ed.). Boston: Allyn & Bacon. Stockholm May 2014