Skills-building workshop on Disability, HIV and Behaviour – Part 1

1. Skills-building workshop on Disability, HIV and Behaviour – Part 1 Dr. Yousif Ismail Al-Zubair Peace & Tolerance International Organization(PTIO) -SUDAN December,5th,2011

2. Correlation of the anatomical characteristics of man with his behavior: • Consistency in personality and behavior. • Personality development towards self- realization or self-actualization. • Motivation of superiority is innate. • Behavior is goal directed towards the completion of energy cycle. • The perception of disability within the Person with Disability (PWD) and the direct effect of that on the behavior.

3. Disability: • Disability occurs in all cultures creating disruption of regular patterns of social interaction, functioning and performance of role-related responsibilities. • Disability creates feelings of marginalization, isolation, dependability, restricted mobility or inability to fill role expectations. • It enforces changing or ambiguous role structure, inadequate social status, inconsistency and blocked aspiration or uncertainty about outcome of personal efforts. • It builds feelings of some PWDs that they have suffered an injustice and that the society owes them support and attention.

4. Disability effects: • Feelings of PWD towards her/his disability vary in intensity and duration with age, sex, culture background faith and other factors. • Culture factors influence the perception and explanation of disability experienced by PWDs that reflected in the sequence of their behavior. • Restricted mobility, sensory isolation and social incapacitation constitute grave deprivation that curtail normal pattern of human interaction. • the typical stigmatizing attitudes held by the non-disabled towards PWDs that of a negative prejudgment concerning their personal traits, including what is called devaluation.

5. Attitudes towards disability: • Person with mild disability may have a greater push to hide and deny her/his disability whereas another with a severe one has little recourse but to accept herself/himself as a PWD. • The mildly disabled tend to direct their feelings of disability outward whereas the severely disabled internalized these feelings. • Disability entitles PWDs, within limits, to exemption from usual role demands to reach a recognition that her/his state is inherently undesirable and consequently pushed to seek help from others. • The dependent- role does not suit some PWDs, for whatever reasons, others submit reluctantly, but some welcome the role.

6. Cont. • Behavioral incapacities and social isolation place the PWD in a subordinate position where many goals are inaccessible. • Social stigma may devaluate the PWD, but her/his own attitude may reflect devaluation to the extent disability may not remain confined to the actual limits of impairment. • For those who loose a limb suddenly they come to see that their bodies are forever changed or scarred. • They do not loose only the organ but their place in society, self- perception and perception of others.

7. Cont. • Within this realm, surgical amputation can be defined as “the actual physical loss of the limb as a part never again to be seen or felt, gone for ever.” • Those disfigured by traumatic incident, no matter how young or old, must recreate themselves. • They must discover new ways of moving their bodies to accomplish tasks that once were completely easy. • They must find new identities to fit new body images.

8. Boredom: • It is one of the very important problems that face PWDs during their daily life. • Boredom does not mean the affective result of cognitive deprivation alone, but also the result of sensory and social isolation and restricted mobility. • The neurophysiologic reactions of the brain functioning depends on continuing arousal reaction generated in the reticular formation. • This depends on constant sensory bombardment to keep sensory stimuli ongoing to maintain arousal and avoid monotonously repeated stimulation of unchanging environment.

9. Repercussions: • Physical disabilities when interfere with communications and mobility are expected to disrupt social participation, recreation and interpersonal relationships. • Isolation due to permanent, partial or total loss of a receptor system as in deafness or blindness has many behavioral effects. • They all lead to relatively high rate of emotional maladjustment , social immaturity and negative attitudes. • Brain damaged persons display a wide array of emotional responses which arise principally from loss of inhibition and control over behavior.

10. PWDs vulnerability to HIV/AIDS & addiction of alcohol and drugs: • Lack of education, lack of self- esteem and self-advocacy skills, lack of understanding of social norms and appropriate behavior and communication difficulties are strong contributing factors to the high incidence of vulnerability among this population. • There are physical abuse, neglect, sexual abuse, psychological or emotional abuse and belittling. • Systemic abuse (denied access to an appropriate service due to perceived support needs).Passive neglect (a caregiver's failure to provide adequate food, shelter, etc..)

11. Cont. • Little attention has been given to the risk of HIV/AIDS for individuals who have a physical, sensory, intellectual, or mental health disability before becoming infected. • PWDs are incorrectly thought to be sexually inactive, unlikely to use drugs, and at less risk for violence or rape than their non-disabled peers. • Disabled individuals (both male and female) around the world are more likely to be victims of sexual abuse and rape than their non-disabled peers. • Factors such as increased physical vulnerability, the need for attendant care, life in institutions, and the almost universal belief that disabled people cannot be a reliable witness on their own behalf make them targets for predators

12. Cont. • In cultures in which it is believed that HIV-positive individuals can rid themselves of the virus by having sex with virgins, there has been a significant rise in rape of disabled children and adults. Assumed to be virgins, they are specifically targeted. • Bisexuality and homosexuality have been reported among some PWDs’ groups, while awareness of HIV/AIDS and knowledge of HIV prevention is low in such groups. • PWDs are at increased risk of substance abuse and less likely to have access to interventions. It is estimated that 30% of all street children have some type of disability and these young people are rarely reached by safe-sex campaigns.

13. Cont. • Literacy rates for disabled individuals are exceptionally low, thus making communication of messages about HIV/AIDS all the more difficult. • Sex-education and HIV/AIDS programmes for those with disability are rare, where AIDS campaigns are on radio or television, groups such as the deaf and the blind are at a distinct disadvantage. •  Care and health services are not only often too expensive for impoverished disabled persons, but it can also be physically inaccessible—e.g, clinic steps bar the way for a wheelchair user and consultation with a physician without a sign-language interpreter is meaningless for most deaf persons. •  Disabled people are less able to defend themselves from attack and find it more difficult to seek recourse through the courts, which are often physically inaccessible or do not have sign language interpreters available..

14. Cont. • Being a disabled woman is an additional risk factor. • Disabled women face unique challenges in preventing HIV infection, because of their heightened risk of gender-based violence, lack of access to reproductive health care services and low awareness of mother-to-child HIV transmission. • Women with disability, compared with non-disabled women and with men with disability, are more likely to be illiterate, and stigmatized. • These women are more likely to live in a series of unstable hazardous relationships than to marry.

15. PWDs’ motivations to risky behaviors • Challenging behavior in PWDs may be caused by a number of factors, including biological need for sensory stimulation. • Social factors such as boredom, seeking social interaction, the need for an element of control, lack of knowledge of community norms, insensitivity to the person's wishes and needs from those around. • Psychological factors envisaged in feelings of exclusion , loneliness, devaluation and living up to people's negative expectations or simply a means of communication with peers and others. • Challenging behavior is a method of communicating dissatisfaction with the failure of those providing services to focus on what kind of life makes most sense to the PWD.

16. Thank you • END OF PART ONE • Skills-building workshop on Disability, HIV and Behaviour – Part 1

17. Skills-building workshop on Disability, HIV and Behavior – Part 2 Dr. Yousif Ismail Al-Zubair Peace & Tolerance International Organization(PTIO) -SUDAN December,6th,2011

18. Skills Building: on Disability and Behavior • Peer psychological support for Individuals Living with AIDS(ILA): • Peer psychological support aims to let ILA with disability learn how to behave themselves through the experience transferred to them from others who went through the same ordeal. • Severity and longevity of HIV/AIDS symptoms can be lessened by social support received by ILAs. • Emotional support will be helpful if it includes specific and detailed disclosure, happens with a peer who already have passed through the same experience .

19. Cont. • Individuals need information to gain a cognitive sense of control over the events. • Peer support enables them to express their emotional reactions and gain sense of control and security. • Peer education can include identification of the available institution and individuals for help. • Along with, a longer-term educational intervention to help ILAs develop new skills to cope with their health situation and to minimize stress in their lives. • Skills such as relaxation techniques, physical activities etc.

20. Family attitude • Unconditioned support of the family is one of the major factors that can help PWDs to overcome most of their problems. • Family support dos not always help, because families do not receive counseling and help on how to assist a family member that has disability. • In their efforts to help they somehow promote dependency of that PWD which in itself some sort of disability. • The disabled person role or status within the family has something to do with the family’s attitudes toward and acceptance of her/his disability.

21. Cont. • With an evident love and support of the family, PWDs are remarkable in their creativity. They can devise ways of achieving their goals when feel supported and encouraged. • Some families are not immune to prevailing stereotypes about PWDs when they tend to protect rather than push. • There is a need to help the recently mobility-enabled person to make what is often a Herculean effort to re-engage the world and to make the assistive device part of her/him. • It must be clear that artificial limbs do not put food on the table or ensure psychological health and social integration.

22. Cont. • Families who encourage the expressiveness of individual ideas, will push PWDs to be social risk takers, extraverted people who reach out for others and have feelings of that all family members will support each other in time of need. • Those families are more likely to promote high self-esteem, good social skills and positive adjustment in any individual injured or otherwise with born-with disability. • Lack of family cohesion and high conflict within the family, are correlated with poor adjustment, learned helpless and social shyness of PWD.

23. Coping skills • PWD’s wellbeing depends highly on: - to achieve sense of balance in emotions and social relationships. - to be aware of her/his abilities and limitations. - to be able to get around in the social and physical environment to reach socio-economic integration. - and participate in social, vocational and recreational activities and identifies priorities. • The well-being of PWDs need to have help to let them feel some hope to continue deal with physical adjustment, mobility challenges and the psychological coping with the different difficulties of life.

24. cont. • The psychological support for disabled ILA must be moral and social. • The aim is to provide them with practical support reinforcing their reactions as “normal”, addressing common fears, concerns and increasing their capacity to tolerate disturbing emotions and sharing strategies for coping. • The aim is, also, to use a cognitive restructuring and reforming methods to reach normalization of the feelings and emotions of PWD towards her/his situation.

25. Cont. • One step of coping skills is to find a way to face your fears. Fear is normal. Facing fears can increase self-esteem. • Finding role models can help to establish and nurture a supportive social net. Being altruistic means that you are not going it alone, everybody needs a supportive social network. • Coping skills need to make use of personality styles to feed into them-if they are dramatic, if they are obsessive, and if they are aloof. • We make use of all these and use them to our advantage.

26. Cont. • Coping may face difficulties during the adaptation process which are normal experiences of persons struggling to develop new ways of feeling good about themselves. • Training and practice towards self-efficacy, particularly in the domain of social skills are important elements for PWDs to learn to deal with predictable hurtful reactions from some naïve individuals in society. • They have to learn to be lovable that people will be fond of their physical differences. • Coping skills are to make explicit the expectation that each PWD is a human individual who can be strong and competent, optimistic and autonomous. • At the same time, he/she can have moments of sadness, despair or rage. Such uncomfortable human feelings must be validated.

27. Employment as a coping skill: • PWD needs to feel the ability to be productive and provide for one’s own and one’s family the basic needs. • The desire to work goes beyond simply having an income. It comes to reflect deeper psychological needs to have breadwinner roles and status in the family. • It reflects the need to feel capable, to demonstrate that they are not a burden, to participate in society and to feel and know that they are normal. • Employment can have either intrinsic value(the meaning of the work itself) or instrumental value( financial benefits).

28. Cont. • Work can help PWD in a number of ways: • - It can work as a source of identity, self-esteem and prestige in the community. • - It can work to structure and organization of the day. • - Social support and companionship and involvement in collective activities. • - Role fulfillment in one’s family and a purpose for life and psychological well-being. • Men and women are channeled in the labor force into sex-stereotyped roles. If disability makes it difficult or impossible for traditionally-male vocation, this could contribute to a loss of status, an identity issue or other negative psychological impacts.

29. Faith: • Use of religion and faith as a coping strategy has been shown to mediate the relationship between the stressors and physical and psychological health. • Faith resources aid individuals in crisis by: providing meaning and comfort, giving a sense of control over adverse situation that might appear hopeless, preserving or strengthening self-esteem and providing social support. • Religion works as a social support that comes along with integration into a religion community and as a belief system that gives meaning out of crises. • Where the stress of disability is beyond personal control, religious coping might be effective due to the feeling that every thing happened by the will of God.

30. Physical exercise: • Exercise enhance brain function and help to learn and remember better. • Not only the physical exercise itself, but the importance of social support derived from activity participation by sports companions. • Sport can be useful to the rehabilitation of PWDs to break into the common cycle of decreased physical activity which leads to de-conditioning, reduced endurance and diminished ability to handle daily life activities. • Sport is a very important tool to deviate PWDs from following risky and hazardous behaviors and one of the ways to defeat boredom.

31. Thanks • END OF PART -2 • Skills-building workshop on Disability, HIV and Behaviour – Part 2 • Dr. Yousif Ismail Al-Zubair • Peace & Tolerance International Organization(PTIO) • -SUDAN December,5th and 6th,2011