The Disability Paradox

pathogenesis

the study of the origin and development of a disease

salutogenesis

study of what produces health

• the movement towards the wellness pole of the wellness illness continuum

salutogenesis (an assets approach)

1. gratitude

   • learned resourcefulness

   • learned optimism

   • hopefullness

   • sense of coherence

   • emotional intelligence

2. self-efficacy

   • cultural capital

   • quality of life

   • connectedness

3. hardiness

   • social capital

   • resilience

   • flourishing

   • action competence

4. empathy

   • empowerment

   • will to meaning

   • interdisciplinary

   • ecological system theory

5. humor

   • coping

   • locus of control

   • wellbeing

   • attachment

personal and environmental

factors that influence health

• personal: person’s characteristics

  • self-efficacy, self-determination

• environmental: physical, social, attitudinal

  • social support

wellness-illness continuum

-H: poor health

+H: good health

Stress factor: what happens when you face this st (personal factor or environmental factor) stressor?

tension: some people will have the assets they need to help (saluto), others won’t (patho)

salutogenic orientation

“heterostasis”

1. health ease/disease continuum

2. the history of the person

3. salutary factors

4. stressors and tension might be pathogenic, neutral, or salutary

   • can lead to poor health or better health (no sick vs well)

5. active adaptation

6. the “deviant” case

   • what about the other % of people that doesn’t lead them to morbidity

pathogenic orientation

“homeostasis”

1. healthy/sick dichotomy

2. the person’s disease/diagnosis

3. risk factors

4. stress is pathogenic

   • thinking it will cause a disease

5. the magic bullet

   • the cure that will bring someone back to good health

6. hypothesis confirmation

   • research supports

sense of coherence

general orientation towards the world

• when a person is confronted with a stressor, someone with a high level demonstrate:

  • comprehensibility

  • manageability

  • meaningfulness

comprehensibility

person with high SOC believes that the challenge is understandable

manageability

person with high SOC will believe that the necessary resources to adapt are available

meaningfulness

person with high SOC will believe that the demands and challenges are meaningful and warrant investment and commitment

development of salutogenesis

1. concept of SOC

2. becomes a SOC questionnaire

3. search on google

the disability paradox

personal experience with disability defines our view of the world and our relationships

• why do certain people in situations of disability have a deep sense of well-being and manage their stress well?

balance of disability paradox

1. thought (intelligibility)

2. body (manageability)

3. spirit (meaningfulness)

external observers

• negative attitudes held by the public and health professionals towards people in situations of disability

• these attitudes are accompanied by a judgement that people in situations of disability don’t have as good a quality of life as those who do not have disabilities

negative attitudes and health

1. perception of a negative attitude/stigma towards a person reduces their help-seeking

2. negative attitudes towards a patient with a stroke predict shorter long-term survival

3. if a person with disability internalizes the discrimination they face, this is associated with higher levels of psychological distress and lower quality of life

4. negative thoughts can feed pessimism and increase an individual’s stress

5. social isolation has negative effect on quality of life

positive attitudes and health

1. better life expectancy

2. less depression

3. better immune function: resistance to colds

4. better psychological and physical well-being

5. reduced number of deaths tied to cardiovascular

6. better adaptation in moment of stress/great challenges

results: factors that contribute to good quality of life

1. acknowledging their impairment

2. having control of their bodies and emotions

3. being able to maintain certain roles

4. having a “can do” approach to life

5. finding a life purpose, sense of harmony in life

6. spirituality

7. emotional exchange

• 54.3% (compared to 80-85% people w/o disability with the same results

factors that contribute to poor quality of life

1. pain: loss of control - body, social life, environment

2. pain often invisible, credibility questioned

3. fatigue

   • loss of energy, difficulty planning a full life and maintaining roles

4. no clear direction in life, no spirituality

   • feeling lost and isolated

authors didn’t measure ____

external observers/negative attitudes

balance: good quality of life

between body and mind: maintaining roles and functions “can do” approach

• people who perform and take satisfaction from their roles are intellectually conscious of their realizations in relation to what they can expect from their bodies’ biological functioning

resistance: individual characteristic to psychologically resist life’s challenges

context: environment: social support = increase QOL

balance: passable or bad quality of life

lack of balance between mind, body, spirit, and the environment

• pain has caused deterioration of relation between mind and body

• incomprehensible = depression

• fatigue: deterioration between body and mind, body does not respond to the spirits’ wants

• environment: feeling detached from the outside world

conclusions

a paradox exists

• certain people in situations of disability show a good quality of life (i.e., a balance between mind, body, spirit, and environment)

• others have a lesser quality of life, maybe due to their health problems, lack of resources, knowledge and environmental constraints

Swiss study

perceived health

activity limitations and restricted participation

important: consider the context

impairment does not lead directly to negative perception of health but limitations and restrictions…

recent data on external observers

many articles show an improvement in attitudes of health professionals/public towards people with a disability

• a few studies show gender differences for the health of professionals: women having more positive attitudes than men

certain fields report enduring negative attitudes

• mental health

• ID

• HIV

• older adults

John McDonell

has FA and describes the lived experience of disability

Friedreich’s ataxia

degenerative neurological disease characterized by cerebellar degeneration (damage to pathways between cerebellum and spinal cord)

• lack of muscular coordination

• lack of energy

• communication difficulties

• often hearing difficulties

• difficulties with fine motor skills

visible disability

• negative attitudes “social repercussions”

• heartbreak

• big muscular man “pitiful”

• “negative side too obvious”, burden on the family and close loved ones

• restricted participation

  • normal activities

  • employment

how to live better with “it”

Our real problem is accepting our personal limits that go beyond our physical difficulties

• inside world: privileged

• social support: family and close loved ones

• being spiritual

• helping others: support group, AF and therapies

• adapting is not simply surviving, but living a full life

message for providers

• be humble and listen to us

• empathy

• environment: the system is far from being human, society should be more sensitive