Disability

International Symbol of Access

Disability, according to the World Health Organization, is defined as "...an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives."[1]

A disability may be physical, cognitive, sensory, emotional, developmental or some combination of these. Some people with types of mental illness, as well as people who are deaf (see Deaf culture), object to having their condition regarded as a disability, claiming it is simply a "difference" that has been unfairly stigmatized by the society in which they live. The concept of ableism, however, used chiefly by those with physical, cognitive or mental disabilities, differs somewhat from that perspective.

An individual may also qualify as disabled if he/she has had an impairment in the past or is seen as disabled based on a personal or group standard or norm. Such impairments may include physical, sensory, and cognitive or developmental disabilities. Mental disorders (also known as psychiatric or psychosocial disability) and various types of chronic disease may also be considered qualifying disabilities.

A disability may occur during a person's lifetime or may be present from birth. A physical impairment is any disability which limits the physical function of limbs or fine or gross motor ability.

Contents

Definitions

Handicap

Some people with disabilities do not like the term "handicap" because of a belief that it originally meant someone who could not work and went begging with their cap in hand. This, however, appears to not be the true origin of the word. It originated in a lottery game known as Hand In Cap in the 1600s which involved players placing money in a cap. It moved later into horse racing where it meant bringing the strongest competitors back to the field by giving them extra weight to carry. In golf, it became the number of strokes a player could subtract from his score to give him a chance against better players, so a bigger handicap is actually an advantage in golf. Only in 1915 did it become a term to describe disabled people, when it was used to describe crippled children.[2]

People first language

The American Psychological Association style guide states that, when identifying a person with an impairment, the person's name or pronoun should come first, and descriptions of the impairment/disability should be used so that the impairment is identified, but is not modifying the person. Improper examples are "a borderline", "a blind person", or "an autistic boy"; more acceptable terminology includes "a woman with Down syndrome" or "a man who has schizophrenia". It also states that a person's adaptive equipment should be described functionally as something that assists a person, not as something that limits a person, e.g. "a woman who uses a wheelchair" rather than "a woman in/confined to a wheelchair."

A similar kind of "people first" terminology is also used in the UK, but more often in the form "people with impairments" (e.g. "people with visual impairments"). However, in the UK, the term "disabled people" is generally preferred to "people with disabilities". It is argued under the social model that while someone's impairment (e.g. having a spinal cord injury) is an individual property, "disability" is something created by external societal factors such as a lack of wheelchair access to their workplace.[3] This distinction between the individual property of impairment and the social property of disability is central to the social model. The term "disabled people" as a political construction is also widely used by international organisations of disabled people, such as Disabled Peoples' International (DPI).

Literature

Many books on disability and disability rights point out that "disabled" is an identity that one is not necessarily born with, as disabilities are more often acquired than congenital. Some disability rights activists use an acronym TAB, "Temporarily Able-Bodied", as a reminder that many people will develop disabilities at some point in their lives due to accidents, illness (physical, mental or emotional), or late-emerging effects of genetics.

Masculinity

According to author Daniel J. Wilson, the characteristics of masculinity include strength, activeness, speed, endurance, and courage. These characteristics are often challenged when faced with a disability and the boy or man must reshape what it means to be masculine. For example, rather than define "being a man" through what one can physically do, one must re-define it by how one faces the world with a disability and all the obstacles and stereotypes that come with the disability.[4]

In Leonard Kriegel's book, Flying Solo, he describes his fight with poliomyelitis and the process of accepting his disability in a world that values able-bodiedness. He writes, "I had to learn to be my own hero, my own role model – which is another way of saying that I had to learn to live with neither heroes nor role models" (pg. 40).[5]

Femininity

Some note that women who are disabled face what is called a "double disability", meaning they must not only deal with the stereotypes and challenges posed by femininity, but they must also deal with those posed by being disabled. Culture also tends to view women as fragile and weaker than men, stereotypes which are only heightened when a woman has a disability.[4]

According to the "Survey of Income and Program Participation", as described in the book Gendering Disability, 74 percent of women participants and 90 percent of men participants without disabilities were employed. In comparison, of those with a form of disability, 41 percent of women and 51 percent of men were employed. Furthermore, the nondisabled women participants were paid approximately $4.00 less per hour than the nondisabled men participants. With a disability, women were paid approximately $1.00 less than the nondisabled women participants and the men were paid approximately $2.00 less than the nondisabled men participants. As these results suggest, women without disabilities face societal hardships as compared to men, but disability added to the equation increases the hardships.[4]

Theory

The International Classification of Functioning, Disability and Health (ICF), produced by the World Health Organization, distinguishes between body functions (physiological or psychological, e.g. vision) and body structures (anatomical parts, e.g. the eye and related structures). Impairment in bodily structure or function is defined as involving an anomaly, defect, loss or other significant deviation from certain generally accepted population standards, which may fluctuate over time. Activity is defined as the execution of a task or action. The ICF lists 9 broad domains of functioning which can be affected:

(see also List of mental disorders)

In concert with disability scholars, the introduction to the ICF states that a variety of conceptual models has been proposed to understand and explain disability and functioning, which it seeks to integrate. These models include the following:

The medical model

The medical model is presented as viewing disability as a problem of the person, directly caused by disease, trauma, or other health condition which therefore requires sustained medical care provided in the form of individual treatment by professionals. In the medical model, management of the disability is aimed at a "cure," or the individual’s adjustment and behavioral change that would lead to an "almost-cure" or effective cure. In the medical model, medical care is viewed as the main issue, and at the political level, the principal response is that of modifying or reforming healthcare policy.

The social model

The social model of disability sees the issue of "disability" as a socially created problem and a matter of the full integration of individuals into society (see Inclusion (disability rights)). In this model, disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment. Hence, the management of the problem requires social action and is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is both cultural and ideological, requiring individual, community, and large-scale social change. From this perspective, equal access for someone with an impairment/disability is a human rights issue of major concern.

Other models

Management

Assistive technology

A hand-operated device allows normal driving for persons with leg disabilities in an automatic car.

Assistive Technology (AT) is a generic term for devices and modifications (for a person or within a society) that help overcome or remove a disability. The first recorded example of the use of a prosthesis dates to at least 1800 BC.[8]

A more recent notable example is the wheelchair, dating from the 17th century. The curb cut is a related structural innovation. Other modern examples are standing frames, text telephones, accessible keyboards, large print, Braille, & speech recognition computer software. People with disabilities often develop personal or community adaptations, such as strategies to suppress tics in public (for example in Tourette's syndrome), or sign language in deaf communities. Assistive technology or interventions are sometimes controversial or rejected, for example in the controversy over cochlear implants for children.

A number of symbols are in use to indicate whether certain accessibility adaptations have been made.[9]

Adapted sports

Wheelchair basketball match between South Africa and Iran at the 2008 Summer Paralympics

The Paralympic Games (meaning "alongside the Olympics") are now held after the (Summer and Winter) Olympics. The Paralympic Games include athletes who have a wide range of disabilities. In many countries, organizations exist to organize competition in the Paralympic sports on levels ranging from recreational to elite (for example, BlazeSports America in the United States).

The Paralympics have come a long way from its humble beginnings as a rehabilitation programme for British war veterans with spinal injuries. Back in 1948, Sir Ludwig Guttman, a neurologist who was working with World War II veterans with spinal injuries at Stoke Mandeville Hospital in Aylesbury in the UK, began using sport as part of the rehabilitation programmes of his patients.

In 2006, the Extremity Games was formed for people with physical disabilities, specifically limb loss or limb difference, to be able to compete in extreme sports. The College Park Industries, a manufacturer of prosthetic feet, organized this event to give disabled athletes a venue to compete in this increasingly popular sports genre also referred to as action sports. This annual event held in the summer in Orlando, FL includes competitions in skateboarding, wakeboarding, rock climbing, mountain biking, surfing, moto-x and kayaking. Non-profit organizations have created programs to advance adaptive sports for regular recreation and sport opportunities.

Accessible computing

As the personal computer has become more ubiquitous, various organizations have formed to develop software and hardware to make computers more accessible for people with disabilities. Some software and hardware, such as Voice Finger, SmartboxAT's The Grid, Freedom Scientific's JAWS, the Free and Open Source alternative Orca etc. has been specifically designed for people with disabilities; other pieces of software and hardware, such as Nuance's Dragon NaturallySpeaking, were not developed specifically for people with disabilities, but can be used to increase accessibility.

Furthermore, organizations, such as AbilityNet and U Can Do IT, provide assessment services that determine which assistive technologies will best assist an individual client. These organizations also train disabled people in how to use computer-based assistive technology.

The LOMAK keyboard was designed in New Zealand specifically for persons with disabilities.

The Internet is also used by disability activists and charities to network and further their goals.

Government policies and support

United Nations

On December 13, 2006, the United Nations formally agreed on the Convention on the Rights of Persons with Disabilities, the first human rights treaty of the 21st century, to protect and enhance the rights and opportunities of the world's estimated 650 million disabled people.[10] Countries that sign up to the convention will be required to adopt national laws, and remove old ones, so that persons with disabilities would, for example, have equal rights to education, employment, and cultural life; the right to own and inherit property; not be discriminated against in marriage, children, etc.; not be unwilling subjects in medical experiments.

In 1976, the United Nations launched its International Year for Disabled Persons (1981), later re-named the International Year of Disabled Persons. The UN Decade of Disabled Persons (1983–1993) featured a World Programme of Action Concerning Disabled Persons. In 1979, Frank Bowe was the only person with a disability representing any country in the planning of IYDP-1981. Today, many countries have named representatives who are themselves individuals with disabilities. The decade was closed in an address before the General Assembly by Robert Davila. Both Bowe and Davila are deaf. In 1984, UNESCO accepted sign language for use in education of deaf children and youth.

Costa Rica

Under the Ley de Igualdad de Oportunidades (Law of Equal Opportunities), no person can be discriminated by their disabilities if they are equally capable as another person. This law also promotes that public places and transport should have facilities that enable people with disabilities to access them.

May 28 is the Día Nacional de la Persona con Discapacidad (National Disabled People Day) to promote respect for this population.

Currently the political party Partido de Acceso Sin Exclusión (Access Without Exclusion Party) fights for the rights of disabled persons, and one congressman, Oscar López, who is blind.

United Kingdom

Under the Disability Discrimination Act (DDA) (1995, extended in 2005), it is unlawful for organisations to discriminate (treat a disabled person less favourably, for reasons related to the person's disability, without justification) in employment; access to goods, facilities, services; managing, buying or renting land or property; education. Businesses must make "reasonable adjustments" to their policies or practices, or physical aspects of their premises, to avoid indirect discrimination.[11]

A number of financial and care support services are available, including Incapacity Benefit and Disability Living Allowance.[12]

Employment

The Employers' Forum on Disability (EFD) is a membership organisation of UK businesses. Following the introduction of the DDA the membership of EFD recognised the need for a tool with which they could measure their performance on disability year on year.

In 2005 80 organisations took part in the Disability Standard benchmark providing the first statistics highlighting the UK's performance as a nation of employers.

Following the success of the first benchmark Disability Standard 2007 saw the introduction of the Chief Executives' Diamond Awards for outstanding performance and 116 organisations taking the opportunity to compare trends across a large group of UK employers and monitor the progress they had made on disability.

2009 will see the third benchmark, Disability Standard 2009. EFD have promised that for the first time they will publish a list of the top ten performers who will be honoured at an award ceremony in December 2009.[13]

United States

Discrimination in employment

The US Rehabilitation Act of 1973 requires all organizations that receive government funding to provide accessibility programs and services. A more recent law, the Americans with Disabilities Act of 1990 (ADA), which came into effect in 1992, prohibits private employers, state and local governments, employment agencies and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, or in the terms, conditions and privileges of employment. This includes organizations like retail businesses, movie theaters, and restaurants. They must make "reasonable accommodation" to people with different needs. Protection is extended to anyone with (A) a physical or mental impairment that substantially limits one or more of the major life activities of an individual, (B) a record of such an impairment, or (C) being regarded as having such an impairment. The second and third criteria are seen as ensuring protection from unjust discrimination based on a perception of risk, just because someone has a record of impairment or appears to have a disability or illness (e.g. features which may be erroneously taken as signs of an illness).

African Americans and disability

According to the 2000 U.S. Census, the African American community has the highest rate of disability at 20.8 percent,[14] slightly higher than the overall disability rate of 19.4%.[14] Although people have come to better understand and accept different types of disability, there still remains a stigma attached to the disabled community. African Americans with a disability are subject to not only this stigma but also to the additional forces of race discrimination. African American women who have a disability face tremendous discrimination due to their condition, race, and gender. Doctor Eddie Glenn of Howard University describes this situation as the "triple jeopardy" syndrome.[15]

Social administration

The US Social Security Administration defines disability in terms of inability to perform substantial gainful activity (SGA), by which it means “work paying minimum wage or better”. The agency pairs SGA with a "listing" of medical conditions that qualify individuals for benefits.

Education

Under the Individuals with Disabilities Education Act, special educational support is limited to children and youth falling into one of a dozen disability categories (e.g., specific learning disability) and adds that, to be eligible, students may require both special education (modified instruction) and related services (supports such as speech and language pathology).

Insurance

It is illegal for California insurers to refuse to provide car insurance to properly licensed drivers solely because they have a disability.[16] It is also illegal for them to refuse to provide car insurance "on the basis that the owner of the motor vehicle to be insured is blind," but they are allowed to exclude coverage for injuries and damages incurred while a blind unlicensed owner is actually operating the vehicle (the law is apparently structured to allow blind people to buy and insure cars which their friends, family, and caretakers can drive for them).[17]

Demographics

Difficulties in measuring

The demography of disability is difficult. Counting persons with disabilities is challenging. That is because disability is not just a status condition, entirely contained within the individual. Rather, it is an interaction between medical status (say, having low vision or being blind) and the environment.

Estimates worldwide

Estimates of worldwide and country-wide numbers of individuals with disabilities are problematic. The varying approaches taken to defining disability notwithstanding, demographers agree that the world population of individuals with disabilities is very large. For example, in 2004, the World Health Organization estimated a world population of 6.5 billion people, of those nearly 100 million people were estimated to be moderately or severely disabled.[18] In the United States, Americans with disabilities constitute the third-largest minority (after persons of Hispanic origin and African Americans); all three of those minority groups number in the 30-some millions in America.[18] According to the U.S. Bureau of the Census, as of 2004, there were some 32 million disabled adults (aged 18 or over) in the United States, plus another 5 million children and youth (under age 18). If one were to add impairments—or limitations that fall short of being disabilities—Census estimates put the figure at 51 million.[19]

There is also widespread agreement among experts in the field that disability is more common in developing than in developed nations.

Nearly eight million men in Europe returned from the World War I permanently disabled by injury or disease.[20]

About 150,000 Vietnam veterans came home wounded, and at least 21,000 were permanently disabled.[21] The number of disabled U.S. veterans has jumped by 25% since 2001 — to 2.9 million.[22]

After years of war in Afghanistan, there are more than one million disabled people.[23] This is one of the highest percentages anywhere in the world.[24] An estimated 80,000 Afghans have lost limbs, mainly as a result of landmines.[25]

Society and culture

Current issues

Political rights, social inclusion and citizenship. In developed countries, the debate has moved beyond a concern about the perceived cost of maintaining dependent people with disabilities to an effort of finding effective ways to ensure that people with disabilities can participate in and contribute to society in all spheres of life.

Many are concerned, however, that the greatest need is in developing nations—where the vast bulk of the estimated 650 million people with disabilities reside. A great deal of work is needed to address concerns ranging from accessibility and education to self-empowerment and self-supporting employment and beyond.

In the past few years, disability rights activists have also focused on obtaining full citizenship for the disabled.

However obstacles reside in some countries in getting full employment, also public perception of disabled people may vary in areas.

Disability rights movement

The disability rights movement, led by individuals with disabilities, began in the 1970s. This self-advocacy is often seen as largely responsible for the shift toward independent living and accessibility. The term "Independent Living" was taken from 1959 California legislation which enabled people who had acquired a disability due to polio to leave hospital wards and move back into the community with the help of cash benefits for the purchase of personal assistance with the activities of daily living.

With its origins in the U.S. civil rights and consumer movements of the late 1960s, the movement and its philosophy have since spread to other continents influencing self-perception, organization and social policy.

Disability insurance

Disability benefit, or disability pension, is a major kind of disability insurance, and is provided by government agencies to people who are temporarily or permanently unable to work due to a disability. In the U.S., disability benefit is provided within the category of Supplemental Security Income, and in Canada, within the Canada Pension Plan. In other countries, disability benefit may be provided under Social security systems.

Costs of disability pensions are steadily growing in Western countries, mainly European and the United States. It was reported that in the UK, expenditure on disability pensions accounted for 0.9% of Gross Domestic Product (GDP) in 1980, but two decades later had reached 2.6% of GDP.[26][27] Several studies have reported a link between increased absence from work due to sickness and elevated risk of future disability pension.[28]

A study by researchers in Denmark suggests that information on self-reported days of absence due to sickness can be used to effectively identify future potential groups for disability pension.[29] These studies may provide useful information for policy makers, case managing authorities, employers, and physicians.

Private, for-profit disability insurance plays a role in providing incomes to disabled people, but the nationalized programs are the safety net that catch most claimants.

See also

References

  1. WHO.int
  2. Snopes.com
  3. e.g. Glascow Centre for Inclusive Living: The Social Model of Disability
  4. 4.0 4.1 4.2 Gendering Disability, Bonnie G. Smith and Beth Hutchison, ed., (New Jersey: Rutgers University Press, 2005). ISBN 0-8135-3373-2
  5. Flying Solo, Kriegel, Leonard. (Boston: Beacon Press, 1998). ISBN 0-8070-7230-3
  6. 6.0 6.1 ResearchGateway.ac.nz
  7. Returnondisability.com
  8. Disability Social History Project
  9. GAG.org
  10. ENABLE website UN section on disability
  11. DRC-GB.org
  12. Direct.gov.uk
  13. information on Employers' Forum on Disability (EFD) and Disability Standard edited from the official websites EFD.org.uk and Disabilitystandard.com
  14. 14.0 14.1 Disability Disability rates vary by age, sex, race, and ethnicity.
  15. African American Women with Disabilities: An Overview, DINF.ne.jp
  16. California Insurance Code Section 11628.5.
  17. California Insurance Code Section 11628.7.
  18. 18.0 18.1 World Health Organization, 2004
  19. U.S. Bureau of the Census
  20. Kitchen, Martin (2000) [1980], Europe Between the Wars, New York: Longman, ISBN 0582418690, OCLC 247285240 
  21. "The War's Costs". Digital History.
  22. "VA: Number of Disabled Veterans Rising". FOXNews.com. May 11, 2008.
  23. "Homes for disabled in Afghanistan". BBC News. May 29, 2009.
  24. "Afghanistan: People living with disabilities call for integration". IRIN Asia. December 2, 2004.
  25. Afghanistan's refugee crisis 'ignored'. The Guardian. 2008-02-13.
  26. OECD. Transforming disability into ability: Policies to promote work and income security for disabled people. Paris: OECD Publication Offices. 2003
  27. Labriola M, Lund T. Self-reported sickness absence as a risk marker of future disability pension. Prospective findings from the DWECS/DREAM study 1990–2004. Int J Med Sci 2007; 4:153–158
  28. Virtanen M, Kivimaki M, Vahtera J, Elovainio M, Sund R, Virtanen P, Ferrie JE. Sickness absence as a risk factor for job termination, unemployment, and disability pension among temporary and permanent employees. Occup Environ Med. 2006;63(3):212–7
  29. MEDSCI.org

Further reading

External links