Moving toward a more appropriate model of disability within special schools

1. Moving toward a more appropriate model of disability within special schools Madelaine vd Merwe Pioneer School Consultant: Disability in Education

2. Models of Disability • Religious • Medical • Social Model • Human • Ubuntu • Masiyibambe • Feminist Ethics of Care

3. 20th century: disabled people seen as responsibility of medicine • Medical logic: identifies structural and functional disorder of the body • Bodily ‘problems’ require medical ‘cures’ • An individual model • "the problem - and cause for your marginality - is inside you"

4. Medical model • Health provider in authoritative position • Do not relinquish authority or control • Disallow demonstrations of knowledge • More difficult to facilitate client decision making than decisions on their behalf

5. Social model • Abandoned concepts of care, care giving, informal care, family care giving and formal care • Care gives power to the caregiver, promotes patronising attitudes • Disabled people need human rights and empowerment to control their own lives • Independence is about having choice and control over how help is provided

6. Ubuntu • People are people because they are part of a community • Responsibility to care for one another • All people need to be treated with dignity and respect Social hierarchies of human value not challenged: gerontocratic, gendered, social status

7. Human rights • All people deemed equal • Rights bourne from individual striving for autonomy • Responsibility to respect other’s rights People without resources can’t have their rights upheld Does not include non humans

8. Need for Independence Independence can be taken too far: • “Independence is generally considered to be something disabled people desire above all else. In many ways this is true, for if a person is excessively dependent on others then he or she must fit in with their schedules and plans, with a subsequent loss of freedom and autonomy. In addition, it is all too easy for the relationship between the helper and the person being helped to develop into an unequal one, with the helper having undue power and the disabled person being compelled to constantly express gratitude, or at best never to complain. However, I believe that the notion of independence can be taken too far, restricting the lives of disabled people rather than enriching them.” • “We are all dependent on each other to some degree, yet any limitations disabled people have are labelled and regarded as qualitatively different.” • French, 1993

9. Feminist ethics of care • All humans are equal • Interdependency of all humans • Relationships based on emotional links • Morality is context dependent • We all need love and care

10. FEoC • Caring is the heart of nursing (moral foundation) • Relationships are important • Lead a moral life: obligations to self, family and people in general • Worthiness of caring must be recognized • Providing care is humanizing

11. FEoC in nursing • Attending to subjective and intersubjective relationship • Stay within the other’s frame of reference • Respect for uniqueness of individual • Characteristics of hope and commitment • Paying close attention to another person. • Clients have the right to expect skilled care

12. Approaches to practice in caring • Health care giver vs recipients of care • What does it mean to be a caregiver • Do we think about the meaning of care we provide? • Ontology of my own views on disability and other diversity – values/biases • Re examine own concepts of health/disability

13. Culturally competent care • Culture is sumtotal of way of living, including values, beliefs,standards, linguistic expression,patterns of thinking, behavioural norms not only racially or ethnically different to myself • Cultural competence an important quality of care • Increased no of clients are ethically diverse: immigrants, homeless and needy • Continuous process

14. Cultural competence • Competence indicates development of particular skills • Conceptualized as knowledge, abilities, skills and attitude displayed • Unaware to being sensitive • Cultural competence: interacting in cross cultural situations

15. Cultural identification • Congruent behaviors – not passive • Culture impacts individual’s response, expression of symptoms and attitude toward treatment and recovery • Recognizing a client’s point of view of own illness/disability

16. Antithesis to competence • Incompetence results in: • Negative effect on relationship • Miscommunication • Client do not follow instructions • Reject the provider because of non verbal cues not fitting expectations • Compromise quality of care

17. Skills needed • Willingness to examine own values and beliefs • Willingness to learn from others • Reciprocate in health care practices • Culturally orientated patient assessments • Communication skills • Ability to tolerate silence • Necessity to listen well • Understanding non verbal language • Values of humility, open mindedness, non judgemental • Lose attitude of I

18. summary Providers: self awareness, knowledge and communication skills • Respectful attitude • Willingness to learn • Have open mind Practice: culturally sensitive assessment Goal of empowering client Common goal of defining problem

19. Client centered care • Approach that embraces philosophy of respect and partnership • Non directive • Focussed on concerns as expressed by client • Provider not the only expert in client dyad • Imagine illness/disability through her eyes, not your own

20. Client centered care • Taking client seriously • Educating to enable them to take responsibility • Respecting choices • Flexible individualized intervention • Enable client to problem solve • Client centered = Collaborative partnership

21. Conclusion • Translate medical jargon to everyday language that is understandable and meaningful • Dialogue not monologue Essence of caring practice lies within provider: Knowledge, skill, deep respect, empowerment of clients to become equal partners in care