Experience of Illness, Impairment and Disability - Final Cue Cards (Week 6-9)

Why is Stigma Important ?

Why is Stigma Important ?

We are social beings

Social Inclusion/exclusion → effects on health

What percentage does social isolation have on the increased probability of mortality ?

29%

What is Stigma the umbrella term for ?

Negative Attitudes, Stereotypes, Discrimination, Prejudices

Where does Stigma start ?

Negative Attitudes

Sociocultural conditioning that starts very young (5yrs)

• The beautiful body

• Emphasis on productivity and success

• Socioeconomic factors (disability= poverty, burden on the economy)

• Attribution “sick role”

• Disability = Status degradation

Definition of Stereotype

An often unfair and untrue belief that many people have about all people or things with a particular characteristic.

• X → Generalisations

• Negative/positive

Examples of Stereotype

• French people are romantic

• Germans are always on time

• Older adults have bad health – it’s normal

• All Native Americans are alcoholics

• People with a disability are less competent than those without a disability.

Definition of Prejudice

• To judge before. It’s to make a value judgement.

• Formulating a rash and definitive judgement about a person or a group of people without sufficiently knowing them is important.

• A preconceived idea of a person or a group of people.

• It's always based on a stereotype.

• Because they are ingrained in us by our social environment, undoing them requires conscious acknowledgement and self-reflection.

• X → Beliefs, Judging Before

Examples of Prejudice

• Racism/Antisemitism: believing that race, skin colour or culture makes people inferior or superior

• Class prejudice: believing that certain economic classes are superior or inferior

• Individual believes the stereotype, and they judge that all people with disabilities are incompetent.

Definition of Discrimination

• To exercise prejudice in a direct or indirect manner, towards a person or a group of people.

• An action or a decision that treats a person or a group negatively for reasons such as their race, age or disability.

• Isolate and treat differently people or groups of people based on their origin, religious beliefs, age, gender, disability, real or supposed opinions, etc.

• X → An Act, Gesture

Common victims of Discrimination

• Certain groups are often victims based on race, colour, national or ethnic origin and/or religion.

• Women, people with disabilities and older adults.

Direct Discrimination Example

• After coming back from a disability-related leave, an employee is placed on modified duties, despite a doctor’s clearance to go back to full-time work. The employer decided to place him in a lower, part-time position at a lower pay rate due to incorrect assumptions that the employee could not withstand the pressures of his job, and that his performance would be unreliable because of his past medical condition.

• A manager screens-out people with disabilities in the hiring process based solely on their disability status.

• Individual never hires a person with a disability

Direct Discrimination

Treating someone with a protected characteristic less favourably than others

Indirect Discrimination

Can happen through another person, another organization or policies/rules that may not have been created intending to exclude people with a disability but they do

Indirect Discrimination Example

• An employer indirectly discriminates by instructing an employment agency it has hired to screen out people with disabilities from recruitment processes.

• An employer’s policy of not hiring people who have “gaps” in their résumés because they have been out of the workforce for a period of time could adversely affect people who have had to take time off work for reasons related to a disability.

Stigma as a Social Construct

• It is not functional limitations of impairment that constitute the biggest challenge met by people with a disability, but rather the societal and social responses to them.

• Stigma can be produced when two groups of people are created:

  • THEM (People who have the characteristic)

  • US (People who do not have the characteristic)

Definition of Stigma

• A mark or characteristic indicative of an abnormality

• Stigma is the possession of (or the belief that one possesses) some attribute or characteristic that conveys a social identity that is devalued in a particular social context.

Deviance (in regards to Stigma)

• Deviation from relevant or valued norms

• Not an inherent property

• Indeed, a person isn’t deviant until his/her acts or attributes are perceived as different.

Categorization - US vs THEM

• A person with a disability cannot be independent, autonomous. We must take decisions for them.

• This gives reason to believe “they” are different.

• There often exists a power imbalance

Definition of Intersectionality

• Wheel of Privilege and Power - the closer you are to the center, the more privilege you have.

• The interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group is regarded as creating overlapping and interdependent systems of discrimination or disadvantage.

Example of Intersectionality

• Racialized people have higher rates of disability

  • This is often combined with lower socio-economic or immigrant status

  • And they face barriers accessing health services.

• Of the hate crimes committed in Canada, 52% are attributable to race and ethnicity, and people with disabilities are two to four times more likely to be victims of abuse.

Dimensions of Sigma

• Stigma is a multidimensional process

• Proposed 6 dimensions of stigma

Concealable - Dimension of Stigma

• How apparent the characteristic is to others

  • Having been incarcerated

  • Mental Illness/Fibromyalgia

Course of the Mark - Dimension of Stigma

• Whether the characteristic becomes more apparent with time

  • Parkinson’s Disease

Disruptiveness - Dimension of Stigma

• Does the characteristic interfere with social interactions

  • Hearing impairment

Aesthetics - Dimension of Stigma

• Degree to which the characteristic is unpleasant (unappealing) to others

  • People with an amputated limb

Origin - Dimension of Stigma

• Perceived level of the individual’s responsibility in acquiring the characteristic

  • Teen mom

  • Lung cancer

  • Obesity

Peril - Dimension of Stigma

• Danger that others perceive towards the characteristic in social contexts

  • AIDS

Example of the 6 Dimensions of Stigma (Marcel Nuss: Spinal Muscular Atrophy)

• Course of the Mark

  • Whether the characteristic becomes more apparent with time

• Aesthetics

  • The degree to which the characteristic is unpleasant (unappealing) to others

The 4 Big Types of Stigma

• Social stigma/Public stigma

• Self-stigma

• Label avoidance

• Structural stigma

Public Stigma - The 4 Big Types of Stigma

• When the general public endorses stereotypes about disease and disability and then discriminates against them

• Strongly influenced by medias

  • Example: members of a neighborhood association endorse the stereotype that people living with HIV/AIDS are “contagious” could protest against plans to build an HIV clinic in their area

Self Stigma - The 4 Big Types of Stigma

• Public stereotypes directed inwardly, towards one’s self.

• Certain people aren’t affected by public stereotypes.

  • Example: A person with an intellectual disability (ID) could

    • (a) Be conscious that “most people” think that people with ID are stupid

    • (b) Agree with this stereotype “they’re right” and

    • (c) Apply it to themselves: “I am stupid.”

Label Avoidance - The 4 Big Types of Stigma

• Refers to the process whereby individuals decline or refuse to engage with specific types of services in order to avoid being labeled or stereotyped.

  • Example: students with learning disabilities might refrain from requesting academic accommodations because they do not want to be stereotyped

Structural Stigma - The 4 Big Types of Stigma

• Includes both intentional and unintentional private and public institutional rules, regulations, and norms.

• Regulations, and norms that discriminate against individuals with stigmatized conditions.

  • Example: “interventions”: contentions and isolation for people with psychiatric or developmental disorders.

Public and Structural Stigma - The Impact Stigma

• Affect many life-domains

• Lead to discrimination of many people with a disability in the health system, criminal justice system, housing, employment and education.

• People with disabilities are susceptible to experiencing lesser physical and mental health, resulting in part from discriminatory chronic stress and lack of adequate social support.

Self Stigma - The Impact Stigma

• May influence pursuit of life opportunities through its negative impacts on the individual’s self-concept

  • Decrements in hope and self-esteem

  • Disengagement from treatment (health)

  • Reduction of quality of life

  • Disengagement from educational, career or social life

  • Potentially even suicide

Label Avoidance - The Impact Stigma

• Closely tied to public stigma and self-stigma.

• The avoidance of service use (including social services, medical treatment, and academic and work accommodations) because of a fear of the public consequences of being labeled by others and/or a personal fear of acquiring a stigmatized label.

  • Example: fibromyalgia: individuals may avoid seeking treatment because of the social stigma attached to the illness.

Health - The Impact Stigma

• Stigma may thwart (hamper)

  • Acknowledgement and identification of health conditions

• It may be an obstacle (barrier) to

  • Help-seeking, service provision and treatment adherence

• Each individual is different in their experience and response to stigma and discrimination (ex. Vulnerability vs Resilience)

Why is Disability ≠ Stigma ?

• It is not always the case a person with a disability is stigmatized

• Many studies show that people with a disability are not necessarily devalued or excluded from full participation in their community

Summary: Stigma

• Associated to deviance: acts/attributes perceived as different

• Social construct

• Categorization: US vs THEM

• Depends on context

• Stereotypes may change with time

• Multidimensional

• 4 big types of stigma

• Many impacts

Stigma Findings

• Large portion of all discrimination complaints (50%) are disability related

• Lower level of educational attainment

  • One component avoided/excluded at school

• Employment rates lower for people with Mobility disability vs. no disability

  • 2.7 million Canadians 15 yrs and older (9.6%) have a mobility disability

  • 1/5 (19.1%) employer not aware of condition

  • Over half feel their employer considers them disadvantaged

  • They also feel disadvantaged (over half of sample)

Physical or Sensory Disabilities (PSD)

• Physical: having an amputated limb, cerebral palsy, etc.

• Sensory: Visual and hearing impairments

Concealable - Physical or Sensory Disabilities (PSD)

• Many visible conditions:

  • Blindness (because of technical aids)

  • Spinal cord injury

• Other conditions are sometimes visible

  • Multiple sclerosis

• In this dimension, fear of being discovered may influence the level of stigmatization.

• It may play a minor role in visible conditions but favours feelings of guilt, shame and anxiety for those who have a non-visible condition and who hide their “real body.”

Course of the Mark - Physical or Sensory Disabilities (PSD)

• PSD that is progressive in nature? (i.e., Parkinson’s disease); when the person with PSD faces more limitations and has more apparent symptomology = possibility of increased stigmatization

• However medical conditions perceived as having been provoked by the person with PSD, due to negligent behaviours, and so controllable emergence= negative reactions, rejecting and hostile

  • Tend to be mostly mental or behavioural in nature

Origin - Physical or Sensory Disabilities (PSD)

• PSDs that are perceived as inevitable and uncontrollable (ex. blindness) = positive response of observers (“Us”)

• However, medical conditions perceived as having been provoked by the person with PSD due to negligent behaviours, and so controllable emergence= negative reactions, rejecting and hostile

  • They tend to be mostly mental or behavioural in nature

Disruptiveness - Physical or Sensory Disabilities (PSD)

• Perceived stigma is directly and positively associated to the level of interference with verbal and physical communication.

  • ↑ Interference ↑ Stigma

• Link with Concealable and Course of the mark

Aesthetics - Physical or Sensory Disabilities (PSD)

• Direct link with Concealable

• Individuals with a disability or a disfiguring illness are universally avoided.

• “Us”: visceral sensory response of discomfort, threat to body image, anxiety

• Thus PSD + unpleasing aesthetics may provoke stigmatizing reactions (rejection, avoidance)

Peril - Physical or Sensory Disabilities (PSD)

• More associated to psychiatric conditions

• PSD that is visible and considered severe generates reminder of serious vulnerability and mortality (for “Us”)

• Reminder: life is unpredictable and uncontrollable

  • Which leads to uneasiness, anxiety and the need for social distance (for “Us”)

Stigma - Physical or Sensory Disabilities (PSD)

• Public stigma of PSD individuals continues to constrict their opportunities to integrate and participate fully in community life.

• Reduce stigma with research that helps to change negative attitudes with legislation for people in situations of disability, change environments and empower people to use self-presentation techniques.

Stereotypes in Older Adults - Fraser et al.,

• Are incompetent

• Are a burden on the economy

• Will face inevitable decline

• Are vulnerable

• “Freaks”

• Are ugly

• Are lost causes

• Are worthless

• Are all the same

• Are a weight on others

• Are bad drivers

• Are affected by cognitive impairment

• Suffer (because of their health conditions)

Golden Quote - Fraser et al.,

“… my golden age has slowly turned into a Band-Aid age… The magnifying glass became quite useful (Band-Aid 1) … The eyesight and the hearing diminished … The cataract was removed (No. 6) … So I gave myself the push and asked for Band-Aid 7, a hearing aid. People tell me I look well rested and have not changed a bit. I don’t tell friends about the Band-Aids I use, though.”

Discussion: Autonomy Context - Fraser et al.,

• Concealable: Recognize the importance of technical aids, but don’t want others to know

• Course of the mark: Deterioration of health conditions lead to dependence

• Irony: Technical aids can facilitate autonomy, but people are afraid of discrimination

Discussion: Help-Seeking Context - Fraser et al.,

• Presentation by media: changes in health are “normal”

• No need for treatment or help

• Erroneous perception of those who seek help

Discussion: Employment Context - Fraser et al.,

• Dichotomy

  • ” Older workers rock!”

  • But changes in health are probably a weight on the company, and the “special needs” must be accommodated

• The possibility that older adults hide their changes in health for fear of discrimination.

Discussion: Politics - Fraser et al.,

• Older adults are presented as a weight on the health system that must be resolved

• Vulnerable: “Us”/WE must take care of THEM

Triple Whammy - Fraser et al.,

• Possibility for many stereotypes

  • Ageing

  • Changes in health

  • Using technical aids

Definition of Pathogenesis

• Describes the mechanisms by which a disease develops, progresses, and either persists or is resolved.

• From “X” (disease) and “genesis” (origin).

• Study of the origin and development of a disease

Definition of Salutogenesis

• The study of the origins of health focuses on factors that support human health and well-being rather than on factors that cause disease.

• It comes from the Latin “X” (health) and the Greek term “genesis” (origin).

• Relates to what produces health.

• “The movement towards the wellness pole of the wellness-illness continuum”

Personal and Environmental factors that can influence a person’s health

• Personal: person’s characteristics

  • Self-efficacy, Self-determination

• Environmental: The physical, social and attitudinal (external to the person) 

  • Social Support

Wellness-Illness Continuum

• A visual tool that can be used to help people make healthy choices in their lives.

• At one end of the continuum is premature death, while optimal health lies at the other.

Salutogenic Orientation

Heterostasis

• Health ease/dis-ease continuum

• The history of the person

• Salutary factors

• Stressors and tension might be pathogenic, neutral or salutary

• Active adaptation

• The “devient” case

Pathogenic Orientation

Homeostasis

• Healthy/ Sick dichotomy

• The person’s disease/diagnosis

• Risk factors

• Stress is pathogenic

• The magic bullet

• Hypothesis confirmation

Sense of Coherence (SOC) - Salutogenesis (An Assets Approach)

• General orientation towards the world

• When a person is confronted with a stressor, someone with a high level

  • Will believe that the challenge is understandable: Comprehensibility.

  • Will believe that the necessary resources to adapt are available: Manageability.

  • Will believe that the demands and challenges are meaningful and warrant investment and commitment: Meaningfulness.

Development (SOC) - Salutogenesis (An Assets Approach)

• Concept of SOC

• Becomes a SOC questionnaire (standardised)

• Search on Google Scholar with:

  • Salutogenesis 17,800 results

  • Salutogenesis and disability produced 12,600 results

  • SOC + disability (autism, learning disabilities, injuries, mental health, etc.) 274,000 results

  • Assets and disability: 1, 020, 000 results

Salutogenesis and Health Promotion

Salutogenesis goes beyond simply measuring the feeling of consistency. It is a much broader concept that focuses on resources, skills, capabilities and strengths at different levels: individual and social

The Disability Paradox

• Based on Antonovsky’s ideas of salutogenesis

• Closely linked to SOC

• Authors want to understand why certain people in situations of disability have a deep sense of well-being and manage their stress well.

• Examines the balance between Thought (Intelligibility), Body (Manageability) and Spirit (Meaningfulness).

• New since Antonovsky: dynamic model including emotions, specifically those of people in situations of disability

• Why do people with important disabilities report having a good or excellent quality of life when most of the external observers perceive that these people seem to live an undesirable daily existence?

External Observers - The Disability Paradox

• 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

  • From a blog (2021): “No one can even begin to understand the agony of a handicapped person. What he/she must go through every day and how they cope with life. They are surrounded by people who constantly remind them of their disability.”

Links between Negative Attitude and Health - The Disability Paradox

• Perception of a negative attitude/stigma towards a person may reduce their help-seeking.

• Negative attitudes towards a patient with a stroke predict shorter long-term survival.

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

• Negative thoughts can feed pessimism and increase an individual’s stress.

• Social isolation has a negative effect on quality of life.

Links between Positive Attitude and Health - The Disability Paradox

• Better life expectancy

• Less depression

• Better immune function: resistance to colds

• Better psychological and physical well-being

• Reduced number of deaths tied to cardiovascular disease

• Better adaptation in moments of stress/great challenges

Quality of Life - The Disability Paradox

• Improved quality of life of people with spinal cord injuries.

• Education increases quality of life because it increases access to the job market, stable social ties and a sense of control over one’s life.

• Social support helps reduce a person with a disability’s stress and creates ties to the community.

Results: Quality of Life - The Disability Paradox

• 54.3% report a good quality of life

• Comparison: 80-85% people without disability report good quality of life

• Factors that contribute to a good quality of life:

  • Acknowledging their impairment

  • Having control of their psyches and bodies

  • Being able to maintain certain roles

  • Having a “can do” approach to life

  • Finding a life purpose, sense and harmony in life

  • Spirituality

  • Emotional exchange

• 45 % reported a passable or bad quality of life

• Factors that contribute to bad quality of life:

  • Pain: loss of control: body, social life, environment

  • Pain often invisible, credibility questioned

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

  • No clear direction in life, no spirituality

Balance: Good Quality of Life - The Disability Paradox

• 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

• Resilience: individual characteristic to psychologically resist to life’s challenges (Balance: body and mind)

• Context: environment: Social support ↑ Quality of life

Balance: Passable/ Bad Quality of Life - The Disability Paradox

• 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 - The Disability Paradox

• A paradox exists

• Certain people in situations of disability show a good quality of life: 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.

• At the end of article, suggestions for many future research avenues

Recent Data - The Disability Paradox

• 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 professionals: women having more positive attitudes than men

• Certain fields report enduring negative attitudes:

  • Mental health

  • Intellectual disability

  • HIV/AIDS

  • Older adults

“Learning to live fully, even with a disability” - The lived experience of John McDonell

• Described in his own words

• Friedreich’s ataxia (FA):

  • Friedreich’s ataxia is a degenerative neurological disease characterized by cerebellar degeneration (damage to pathways between the cerebellum and the spinal cord).

  • Estimated prevalence: 1-20,000 to 1-50,000

Symptoms and Changes in Health - The lived experience of John McDonell

• Lack of muscular coordination

• Lack of energy

• Communication difficulties

• Often hearing difficulties

• Difficulties with fine motor skills

Visible Disability - The lived experience of John McDonell

• Negative attitudes: “social repercussions… R for rejected”

• 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” - The lived experience of John McDonell

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

• Inside world and outside world

• Inside world : privileged

  • Social support: Family and close loved ones

  • Being spiritual

  • Helping others: Support group,

    • Book on AF and therapies

• “Adapting is not simply surviving, but living a full life” (McDonell, pg.167)

Overview: Mobility Disability during the COVID-19 Pandemic - Yang et al.,

• People with a mobility disability documented to be at increased risk of severe illness, morbidity, or mortality following disasters

• Disaster risk is multifactorial and not simply a result of having a disability

• During the COVID-19 pandemic, there was increased awareness that “risk” is also shaped by the social context of an emergency

• Purpose of study: to understand the pandemic experiences of people with a mobility disability, factors that impact resilience, and strategies to improve disability-inclusivity during disaster preparedness, response, and recovery

• Methods: Grounded Theory qualitative methodology, consisting on 1-on-1 semi structured interviews with people with a mobility disability

Disaster preparedness and People With Disability (PWD) - Yang et al.,

• PWD are often at increased risk of severe illness, morbidity or mortality following a disaster

  • But disaster risk is not multifactorial and not simply a result of having health conditions.

• PWD experience socially-determined disadvantages that are exacerbated by disasters

  • Disaster management that is not inclusive or considers disability needs, such as mobility needs (wheelchair, cane), or sensory needs (sign-language, caregiver/interpreter)

• There is a need for inclusive Public Health Emergency Preparedness (PHEP) strategies can reduce disaster risk through increasing accessibility and decreasing discrimination.

Disability During Disasters - Yang et al.,

• During emergencies, Public Health measures are often directed at protecting people at risk for medical complications from outbreaks; however, some are at heightened risk due to intersectional factors

  • i.e., socioeconomic status (SES), presence of a health condition

  • Need to look beyond ‘medical risk’ to consider social contexts that impact the ability to manage impacts of COVID-19

• Disability is a complex phenomenon consisting of both features of people’s bodies and features of the environment

  • Intersects with other social determinants and the social environment to affect vulnerabilities and capacities to respond during a disaster

Disaster risk and the Social Determinants of Health (SDoH) - Yang et al.,

• In the context of a pandemic, the clustering of PWD’s SDoH must be addressed to minimize their risk of poor outcomes

• Example:

  • Some policies do not account for PWD being less likely to have private/employer-funded health insurance and more likely to experience stigma and ableist triage processes for health system resources

    • Since healthcare access and healthcare quality is an SDoH, the inequitable experiences of PWD here place them at a greater risk of being overlooked by the medical system during an emergency

• Example:

  • PWD are more likely to require close-contact assistance or in-person services (i.e., living in congregate settings, assistance for transportation, need for physical therapy)

    • Emergency protocols prohibiting in-person contact make it harder for PWD to meet health, safety, social, and employment needs

Mobility Disability - Yang et al.,

• Mobility is a functional need that impacts people’s capacity to manage disaster consequences

  • i.e., mobility impacts evacuation behavior (physical disaster), and access to vaccines (biological disaster)

• According to the 2017 Canadian Survey on Disability (CSD):

  • 22% of the Canadian population aged 15 years or older had at least 1 disability

    • Most common are related to pain (15%), flexibility (10%), and mobility (10%)

  • Can be a consequence of multiple sclerosis (MS), stroke, cerebral palsy, and a variety of orthopedic, neuromuscular, and other conditions

Mobility disability and the Social Model of Disability - Yang et al.,

• Disability consists of the interaction between individuals with a health condition and environmental/contextual factors (i.e., negative attitudes, inaccessible infrastructure)

  • People with a mobility disability experience movement limitations which interacts with contextual factors to affect both daily functioning and social participation

• Social model of disability has been influential in shaping policies as it encourages a shift from addressing individual limitations, to society’s limitations to appropriate services to ensure PWD are fully taken into account in its societal organization

  • How the social environment impacts mobility → contributes to barriers or supports

Purpose and Research Question - Yang et al.,

• Purpose: examine disaster risk and resilience of people with a mobility disability as it intersects with the social determinants of health during the COVID-19 pandemic

• Research Question: What are the experiences of people with a mobility disability in the context of the COVID-19 pandemic?

• Aims:

  • Explore key areas within participant’s experiences that were shaped by the pandemic

  • Share participants’ recommendations for more inclusive future emergency preparedness, response, and recovery

Participants and Recruitment - Yang et al.,

• Sample

  • 16 people with a mobility disability (8M/8F/0 other)

  • Recruited from non-profit or community organizations

• Interviews

  • 16 initial

  • 3 follow-ups

• Locations (6 Cities)

  • Ontario and Quebec, Canada

• Ages (years)

  • 20-86

Semi-Structured Interviews - Yang et al.,

• Remote interviews over the phone/Zoom

• 60-80 minutes

• Recorded and transcribed

• Topics:

  • Activities

  • Experiences with COVID-19

  • Connections

  • Health and wellbeing

  • Health systems and policy

Developing a Grounded Theory - Yang et al.,

• Theory: Adaptation is Not a Choice, It’s a Way of Life

  • Resilience is a normative processes needed to manage disability, both in everyday life, and in a pandemic context

    • Supported an ongoing cycle of resilience

    • Theoretical framework: 6 themes that shaped adaptive capacity

    • To manage impacts of dis-ability (stemming from both mobility disability and pandemic layered on top)

Exacerbated Disability Challenges - Yang et al.,

• Social, physical, and economic outcomes of the pandemic exaggerated some existing barriers

  • an added layer of dis-ability

  • “Double whammy”

• Barriers increase disaster risk

  • Restricted health and social services

    • Options for care limited by physical accessibility

    • Lack of prioritization for healthcare exacerbated during COVID-19

• Barriers to participation

  • Restrictions to para-transport limited social participation

• Limited opportunities for movement

Assets Enhance Resilience - Yang et al.,

• Assets to support adaptive capacity reduce barriers and risk

• External assets

  • Transportation assets (esp. Para Transport or ‘Wheel Trans’)

  • Continuum of care

  • Remote services

    • Telehealth/telework/online social interaction

    • Meal delivery/online groceries/pharmacy

• Internal assets

  • Acceptance and empowerment

Calculated Risks - Yang et al.,

• Took calculated risks during the pandemic to maintain a quality of life and reduced restrictions

  • Not the most ‘vulnerable’ segment of the population

• Policies made for PWD when seen as a ‘vulnerable’ population

• Rather, be seen through abilities and assets to reduce restrictions

  • Took calculated risks to continue doing things they value (i.e: volunteering)

• Risk management and risk communication policies were seen to be paternalistic, undermining PWD’s self-determination to health and risk

  • What is “healthy” to them

Common Experience - Yang et al.,

• Pandemic exacerbated differences between general population and people with a disability caused by systemic barriers

• However, the pandemic also allowed all groups shared common experiences of dis-ability and needs

  • Pandemic as a state of dis-ability for all

  • Same social needs

• Recognize PWD are not a separate, ‘vulnerable’ group

  • Same human rights as those living with deficits during pandemic

• Mitigating pandemic challenges was an opportunity to ‘reduce the gap’

  • Improve inclusion with common solutions

The Role of Increased Innovation - Yang et al.,

• Innovation flourished to mitigate dis-ability experiences during the pandemic

  • Virtual connection, telehealth, remote work/school/leisure activities

• Solutions to accessibility problems are possible

• Highlighted the role of accommodations

  • Accommodating to people’s limitations was seen as essential

• The pandemic could be a ‘good thing’ if it motivated redesign in systems to be more inclusive

Social Justice - Yang et al.,

• Innovation helped PWD overcome usual barriers, but systemic changes were only possible when the pandemic's impacts/restrictions were universal.

• Upstream emphasis is given to interventions to reduce the dis-ability the majority.

  • Accommodations to overcome barriers must be upstream- starting from policy, governance, and systems.

• Social justice is the tipping point for change

  • The onus for change should not be on the person requiring accommodations

Adaption is not a choice, its a way of life - Yang et al.,

• Process of resilience is normative and ongoing

• “I’ve already lived like there’s a pandemic” because universal pandemic restrictions resemble PWD’s normal restrictions

• Adaptive capacity supports resilience

  • Adaptive Capacity: : The ability to modify characteristics or behaviors to cope better to changes

  • PWD are experts at adaptive capacity

Concerted Efforts - Yang et al.,

• Ensures collaborative health care can be maintained

  • i.e., interprofessional team for strategic care plan

  • Should be addressed in emergency preparedness plans

• Organized government and public health response for rollout of plans and accessible risk communication

  • Allows PWD to make informed health decisions and reduce risk

Supporting an Inclusive Virtual Transition - Yang et al.,

• When a virtual transition is needed (i.e., lockdown), government and organizations must ensure accessibility and usability in designs

  • Barriers and needs that affect ability to participate online

  • Not all digital platforms accommodate to PWD’s needs

• All sectors must increase capacity development

  • Being prepared to meet disability needs through having knowledge on different disabilities/disability needs, and having the ability and resources to enhance access to meet those needs when an emergency occurs

  • Policies and protocols for handling physical-distancing challenges prepared pre-disaster

Building Hybrid Models - Yang et al.,

• Method of inclusion

  • i.e., remote accommodations and in-person interaction are important

• Public health and organizations must build hybrid models for comprehensive healthcare and to support diversity in academia, the workplace, and leisure

• Most accessible model to overcoming barriers and meet needs

  • The needs of PWD must be included in models for post-pandemic systems

Defining Essential Needs - Yang et al.,

• Compounded barriers and essential needs must be known and addressed by organizations and public health in pandemic protocol/preparedness plans

• Prioritization of resources, assistance, and funding supports a continuum of services and reduces risk

  • PWD, disability organizations, caretakers have sufficient access to PPEs

  • Give caretakers a ‘pandemic premium’

  • Increased funding to improve or maintain infrastructure/services (i.e., paratrasport)

Conclusion - Yang et al.,

• Adaptation is not a choice, it’s a way of life summarizes lived experiences of PWD during the pandemic and role of adaptive capacity

  • Pre-established frameworks for city-planning, social infrastructure, public health decision-making

  • Call for action to enhance equity and social justice

• Policy planners must ensure inclusive health, social, and financial systems

  • Consider social determinants of health the contribute to risk (beyond ‘medical risk’)

• Living under the pandemic is an opportunity to redefine ‘vulnerability’

• Asset-oriented lens in interventions

  • Shift focus from (mobility) limitations à barriers and needs

• Lifestyle drift: when upstream/social interventions (i.e., to reduce obesity, to maintain inclusion during a pandemic) drift “downstream” to become the individual issue of a certain group

• Adaptive capacity is not a ‘personal problem’ resulting from lifestyle drift

  • Should be outcome of everyday community health resilience enhancing disaster preparedness

  • Although PWD have adaptive capacity to manage impacts of a disaster, the community health approach can be taken which shifts responsibility for resilience to systems