Understanding Disability, Language Use, and Healthcare Models

Definitions and Conceptualizations of Disability

• Definitions of disability vary across dictionary, public health, and legal frameworks:

  • Merriam-Webster Dictionary Definition: A physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities.

  • Centers for Disease Control and Prevention (CDC) Definition: Any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

  • Americans with Disabilities Act (ADA) Definition: A person who has a physical or mental impairment that substantially limits one or more major life activities, or has a history or record of an impairment (such as cancer that is in remission), or is regarded as having such an impairment by others even if the individual does not actually have a disability (such as a person who has scars from a severe burn that does not limit any major life activity).

Global Prevalence of Disability

• Approximately $15\%$ of the global population is currently experiencing a disability.

• This total corresponds to over $1,000,000,000$ people worldwide.

• Conversely, $85\%$ of the world population is not currently experiencing a disability.

Healthcare Access Barriers

• Individuals experiencing disability face multi-dimensional barriers when accessing healthcare services:

  • Attitudinal Barriers:

  • Stigma associated with disability.

  • Inadequate training among healthcare providers.

  • Pervasive barriers specifically affecting women and reproductive rights.

  • Exclusory decision-making processes.

  • Physical Barriers:

  • Inaccessible infrastructure.

  • Fixed-height exam furniture and equipment.

  • Poor lighting and unclear or missing signage.

  • Communication Barriers:

  • Limited availability or complete lack of accessible written information.

  • Lack of access to American Sign Language (ASL) interpreters.

  • Inaccessible formatting of written documents.

  • Inflexible presentation of health information.

  • Financial Barriers:

  • Cumulative costs associated with direct healthcare services, medications, and specialized transportation.

  • Individuals with disabilities are $50\%$ more likely to suffer catastrophic health expenditure compared to those without disabilities (World Health Organization, 2021).

• The 9-Stage Healthcare Access Process:

  1. Awareness of health services: Is the person aware of available health services and transport options?

  2. Experience of health services: Is the person willing to access health services based on prior experiences?

  3. Leaving the house: Is the person able to leave their house, and do they require assistance to do so?

  4. Finances: Is the person able to afford both the health service and transportation?

  5. Transportation: Is travel conducted by car, taxi, or public transport, and is that transport accessible and affordable?

  6. Entering the health service: Is the facility clearly signed, is the entrance accessible, and are staff (including security personnel) welcoming?

  7. Waiting for an appointment: Are the reception desk and waiting areas accessible? Are restrooms accessible? Does the registration system record disability-related information?

  8. During the appointment: Is the health worker responsive to the individual's needs? Does the health worker communicate using plain language and accessible formats? Are examination tables and diagnostic equipment accessible?

  9. After the appointment: How will follow-up information and appointments be communicated? Are prescribed medications and follow-up interventions affordable? Has the individual been referred to appropriate specialist or rehabilitation services and connected to Disabled People's Organizations (DPOs)?

Language surrounding Disability

• Preferred language and terminology surrounding disability undergo continuous evolution over time.

• Person-First vs. Identity-First Language:

  • Person-First Language: Emphasizes the individual before the condition (e.g., "child who has cerebral palsy", "client with cancer").

  • Identity-First Language: Integrates disability as an essential component of identity; frequently preferred by Deaf, Blind, and Autistic communities (e.g., "Autistic person", "Blind child").

• Avoidance of Euphemisms:

  • Avoid vague or patronizing euphemisms such as "special needs".

  • Replace with precise descriptors, such as "requires educational supports" or "requires environmental supports".

• Avoidance of Functioning Labels:

  • Avoid polarizing labels like "low functioning" or "high functioning".

  • Use objective, nuanced descriptions such as "high support needs" or specific functional evaluations.

• Impact on Systemic Bias:

  • Language choices directly impact societal attitudes and can reinforce or dismantle ableism (discrimination in favor of non-disabled people) and sanism (discrimination or prejudice against individuals with mental health conditions or cognitive differences).

Healthcare and Disability Models

• Healthcare practice utilizes distinct conceptual models to define and approach disability:

  • Medical Model of Disability:

  • Views disability as an objective factual reality residing entirely within the individual (Gillen & Brown, 2024).

  • Focuses on bodily impairment and direct medical interventions.

  • Aims to minimize or cure impairments to improve individual function.

  • Positioned around medical staff who "fix" impairments through medication, surgery, and rehabilitation.

  • Defines independence as the benchmark measure of successful outcome.

  • Social Model of Disability:

  • Shifts the focus from individual pathology to societal and external barriers.

  • Centers on environmental accessibility, systemic barriers, and accommodations.

  • Posits that impairment does not equal bad.

  • Premise: "A person with impairments is disabled by their environment" (Gillen & Brown, 2024).

  • Functional Model of Disability:

  • Operates within the broader medical model framework.

  • Focuses on specific functional limitations resulting from bodily impairments.

  • Places responsibility on the individual to adapt or perform interventions to achieve change.

  • Heavily emphasizes physical recovery (Gillen & Brown, 2024).

• Application Example (Wheelchair User Encounters Stairs):

  • Medical Model View: Incomplete Spinal Cord Injury (SCI).

  • Social Model View: Stairs are an environmental barrier.

  • Functional Model View: Unable to ascend stairs due to limitations in functional mobility.

Applied Model Scenarios

• Scenario 1: Physical Ability vs. Architectural Barrier

  • Case: A woman using a wheelchair arrives at a historic building housing a restaurant but cannot enter due to two steps at the entrance.

  • Medical Model Perspective: Focuses on the woman's physical inability to walk up steps resulting from her spinal impairment, viewing her condition as the core problem.

  • Social Model Perspective: Identifies the two steps and the absence of a ramp or elevator as an architectural design barrier created by society, which artificially excludes her from participating.

• Scenario 2: Perceived Intellectual Abilities vs. Employment Accommodations

  • Case: A man with an intellectual disability applies for employment at a retail store.

  • Medical Model Perspective: Focuses on his cognitive deficits and lower intellectual capacity, viewing him as inherently limited in his workplace capabilities.

  • Social Model Perspective: Focuses on workplace accessibility, structured job training, modified task instructions, and reasonable accommodations that allow him to perform job duties effectively.

• Scenario 3: Presumed Quality of Life vs. Lifesaving Care

  • Case: A $20$-year-old woman with cerebral palsy and high support needs is admitted to the hospital with pneumonia, accompanied by her mother. She experiences severe respiratory distress, and clinical staff cannot understand her speech.

  • Medical Model Perspective: Risk of medical staff pathologizing her condition or misinterpreting baseline disability as poor quality of life, focusing strictly on underlying biological deficits.

  • Social Model Perspective: Demands full equity in medical interventions; attributes communication barriers to the hospital's failure to utilize alternative communication systems or consult her mother, asserting her right to equal lifesaving care.

International Classification of Functioning, Disability and Health (ICF)

• Historical Development:

  • $1972$: The World Health Organization (WHO) initiated a preliminary classification scheme concerning the consequences of disease.

  • $1980$: The first edition of the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) was published (reprinted with an updated foreword in $1993$).

  • $1993$: Formal revision process for the ICIDH began, involving systematic evaluations, international conferences, and field trials.

  • $2001$: Official endorsement and release of the International Classification of Functioning, Disability and Health (ICF).

• Purposes of the ICF Standard:

  • Provide a scientific basis for understanding and studying health outcomes and determinants.

  • Establish a standardized common language to improve communication across healthcare disciplines, sectors, and international borders.

  • Enable comparison of health data across countries, health disciplines, services, and time periods.

  • Provide a systematic coding structure for electronic health information systems.

• Integrative Bio-Psycho-Social Framework:

• Core ICF Components:

  • Health Condition: Primary disorder, disease, injury, trauma, or heritable predisposition.

  • Body Functions & Structures:

  • Body Structures: Anatomical parts of the body such as organs, limbs, and their components.

  • Body Functions: Physiological functions of body systems (including psychological functions).

  • Impairments: Significant deviations or structural/functional loss (e.g., limb loss, reduced organ function).

  • Activity & Activity Limitations:

  • Activity: The execution of a specific task or action by an individual.

  • Activity Limitations: Difficulties an individual encounters when executing activities (e.g., mobility restrictions, self-care limitations).

  • Participation & Participation Restrictions:

  • Participation: Involvement and engagement in life situations and community.

  • Participation Restrictions: Problems an individual experiences regarding involvement in life situations (e.g., employment discrimination, social exclusion).

  • Contextual Factors:

  • Environmental Factors: External physical, social, and attitudinal surroundings in which people live (e.g., architecture, legal structures, climate, social prejudice). These act as facilitators or barriers.

  • Personal Factors: Individual background elements outside the health condition (e.g., age, gender, coping style, education, profession, past experiences, overall character). These also act as facilitators or barriers.