Invisible disability
Encyclopedia
Invisible disabilities are disabilities that are not immediately apparent. Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts. A sitting disability
is another category of invisible impairments; sitting problems are usually caused by chronic back pain
. Those with joint problems or chronic pain
may not use mobility aids on some days, or at all.
Invisible disabilities can also include chronic illnesses and conditions such as renal failure
, diabetes, and sleep disorder
s if those ailments significantly impair normal activities of daily living. Other invisible disabilities include, but are not limited to, AIDS/HIV, ADHD, cancer
, and autism
.
and treatment of people with invisible disabilities. These ideologies are pervasive in public culture and expressed in a multitude of ways.
is based on a theory of disability that proceeds from the perspective of the medical professional. In this model, it is the physician’s role to diagnose a disease by analysis of symptoms, and then prescribe a method of treatment. The goal of treating a patient is to reduce or eliminate the ailment. This system of “diagnosis-and-cure” leads to the general perception that a person with a disability is "abnormal," having a condition that is inherently "wrong" and which must therefore be altered through medical science, in order to “normalize” both the condition and the person. However, “disability defies correction and tends to operate according to its own idiosyncratic rules,” and this puts medical intervention in the position of never overcoming disability. With normalcy as its objective, the medical model leads physicians and medical scientists to be ever seeking a solution where, in fact, such a solution is unattainable.
Medical researchers may then sometimes be tempted to employ ethically questionable methods; that is, the medical model of disability may suggest to some that the thought process of medical scientists supersedes "ethics
" in the interest of finding “cures.” Consider, for example, Henrietta Lacks’ cells
, which have been used extensively in medical research. In 1951, Henrietta Lacks
was being treated for cervical cancer at the Johns Hopkins Hospital
, where doctors took cell samples without her consent. As an extreme example, the eugenics
of Nazism
underlay the horrific medical experiment
s in concentration camps, on thousands of disabled people, prior to their being discarded
. Disability activist Barbara Lisicki describes the medical model as an institution where “they are chopping bits of people off because they don’t know how to deal with them”.
Because the medical model of disability focuses on curing something viewed as broken, people with disabilities are perceived as defective. This poses an interesting problem for people with invisible disabilities—those who do not visibly present their disabilities to the casual viewer. On one hand, people with visible disabilities are discriminated against because they appear defective, as the medical model suggests. On the other hand, people with invisible disabilities do not appear to be limited in “normal function”; therefore, when disability issues emerge, they are perceived as whining, attention-seeking, or looking for special favors. In other words, the medical model of disability can lead to misperceptions and misunderstandings that prompt some people to be “insensitive and less willing to accommodate the needs of [people] whose disabilities are not outwardly apparent" .
was designed by people with disabilities as a tool to help analyze, discuss and combat discriminatory practices faced by people with disabilities. In this model, modes of discrimination are expressed in all areas of public life including work, social functions and public policies, which disable individuals from participation in these arenas. For example, a person with an invisible disability may encounter discrimination while interviewing for a job if he or she discloses their particular impairment. Because western society is organized around a set of work values which emphasizes maximization of productivity and profit while encouraging competition between workers, people with invisible disabilities face discrimination in situations where their particular accommodations might be seen as conflicting with the social values. People with disabilities, visible or not, face this kind of social discrimination in employment practices. However, an individual with an invisible disability such as chronic or debilitating fatigue would be hard pressed to disclose that their particular impairment might conflict with social productivity values. As Colin Barnes suggests, when society values principles based on social necessity, obligation and interdependence, people with disabilities will be valued and included in employment opportunities. The social model of disability helps define what societal values actually disable people through imposed measures, which prevent involvement in public life.
96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and act as if they didn't have a medical condition. About a quarter of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions.
The Rehabilitation Act of 1973 has been amended several times such that the definition of “handicapped” includes the statement, “any person who... (C) is regarded as having such an impairment” .
This particular defining point of “handicapped” puts the assessment of impairment in the hands of observers who may or may not regard others as having an impairment. For people with disabilities, invisible or not, this creates a space for discriminatory practices which stem from the observer’s perception of who is disabled and who is not.
Sitting disability
A Sitting disability is a condition in which a person may not be able to sit, usually due to pain, but can also happen to persons sitting in wheel chairs. It is also known as "reduced ability to sit", "sitting problems" or "inability to sit"....
is another category of invisible impairments; sitting problems are usually caused by chronic back pain
Back pain
Back pain is pain felt in the back that usually originates from the muscles, nerves, bones, joints or other structures in the spine.The pain can often be divided into neck pain, upper back pain, lower back pain or tailbone pain...
. Those with joint problems or chronic pain
Chronic pain
Chronic pain has several different meanings in medicine. Traditionally, the distinction between acute and chronic pain has relied upon an arbitrary interval of time from onset; the two most commonly used markers being 3 months and 6 months since the initiation of pain, though some theorists and...
may not use mobility aids on some days, or at all.
Invisible disabilities can also include chronic illnesses and conditions such as renal failure
Renal failure
Renal failure or kidney failure describes a medical condition in which the kidneys fail to adequately filter toxins and waste products from the blood...
, diabetes, and sleep disorder
Sleep disorder
A sleep disorder, or somnipathy, is a medical disorder of the sleep patterns of a person or animal. Some sleep disorders are serious enough to interfere with normal physical, mental and emotional functioning...
s if those ailments significantly impair normal activities of daily living. Other invisible disabilities include, but are not limited to, AIDS/HIV, ADHD, cancer
Cancer
Cancer , known medically as a malignant neoplasm, is a large group of different diseases, all involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body. The cancer may also spread to more distant parts of the...
, and autism
Autism
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their...
.
Ideologies which Affect People with Invisible Disability
There are several ideologies, which play into how people with invisible disabilities are treated. The ideologies focused on here are the medical model of disability and the social model of disability. Each model is essential to understanding the discriminationAbleism
Ableism is a form of discrimination or social prejudice against people with disabilities. It is known by many names, including disability discrimination, physicalism, handicapism, and disability oppression...
and treatment of people with invisible disabilities. These ideologies are pervasive in public culture and expressed in a multitude of ways.
Medical model of disability
The medical model of disabilityMedical model of disability
The medical model of disability is a sociopolitical model by which illness or disability, being the result of a physical condition, and which is intrinsic to the individual , may reduce the individual's quality of life, and causes clear disadvantages to the individual.It is today specifically...
is based on a theory of disability that proceeds from the perspective of the medical professional. In this model, it is the physician’s role to diagnose a disease by analysis of symptoms, and then prescribe a method of treatment. The goal of treating a patient is to reduce or eliminate the ailment. This system of “diagnosis-and-cure” leads to the general perception that a person with a disability is "abnormal," having a condition that is inherently "wrong" and which must therefore be altered through medical science, in order to “normalize” both the condition and the person. However, “disability defies correction and tends to operate according to its own idiosyncratic rules,” and this puts medical intervention in the position of never overcoming disability. With normalcy as its objective, the medical model leads physicians and medical scientists to be ever seeking a solution where, in fact, such a solution is unattainable.
Medical researchers may then sometimes be tempted to employ ethically questionable methods; that is, the medical model of disability may suggest to some that the thought process of medical scientists supersedes "ethics
Ethics
Ethics, also known as moral philosophy, is a branch of philosophy that addresses questions about morality—that is, concepts such as good and evil, right and wrong, virtue and vice, justice and crime, etc.Major branches of ethics include:...
" in the interest of finding “cures.” Consider, for example, Henrietta Lacks’ cells
HeLa
A HeLa cell is a cell type in an immortal cell line used in scientific research. It is the oldest and most commonly used human cell line. The line was derived from cervical cancer cells taken on February 8, 1951 from Henrietta Lacks, a patient who eventually died of her cancer on October 4, 1951...
, which have been used extensively in medical research. In 1951, Henrietta Lacks
Henrietta Lacks
Henrietta Lacks was an African-American woman who was the unwitting source of cells from her cancerous tumor, which were cultured by George Otto Gey to create an immortal cell line for medical research...
was being treated for cervical cancer at the Johns Hopkins Hospital
Johns Hopkins Hospital
The Johns Hopkins Hospital is the teaching hospital and biomedical research facility of Johns Hopkins University School of Medicine, located in Baltimore, Maryland . It was founded using money from a bequest by philanthropist Johns Hopkins...
, where doctors took cell samples without her consent. As an extreme example, the eugenics
Eugenics
Eugenics is the "applied science or the bio-social movement which advocates the use of practices aimed at improving the genetic composition of a population", usually referring to human populations. The origins of the concept of eugenics began with certain interpretations of Mendelian inheritance,...
of Nazism
Nazism
Nazism, the common short form name of National Socialism was the ideology and practice of the Nazi Party and of Nazi Germany...
underlay the horrific medical experiment
Nazi human experimentation
Nazi human experimentation was a series of medical experiments on large numbers of prisoners by the Nazi German regime in its concentration camps mainly in the early 1940s, during World War II and the Holocaust. Prisoners were coerced into participating: they did not willingly volunteer and there...
s in concentration camps, on thousands of disabled people, prior to their being discarded
Genocide
Genocide is defined as "the deliberate and systematic destruction, in whole or in part, of an ethnic, racial, religious, or national group", though what constitutes enough of a "part" to qualify as genocide has been subject to much debate by legal scholars...
. Disability activist Barbara Lisicki describes the medical model as an institution where “they are chopping bits of people off because they don’t know how to deal with them”.
Because the medical model of disability focuses on curing something viewed as broken, people with disabilities are perceived as defective. This poses an interesting problem for people with invisible disabilities—those who do not visibly present their disabilities to the casual viewer. On one hand, people with visible disabilities are discriminated against because they appear defective, as the medical model suggests. On the other hand, people with invisible disabilities do not appear to be limited in “normal function”; therefore, when disability issues emerge, they are perceived as whining, attention-seeking, or looking for special favors. In other words, the medical model of disability can lead to misperceptions and misunderstandings that prompt some people to be “insensitive and less willing to accommodate the needs of [people] whose disabilities are not outwardly apparent" .
Social model of disability
The social model of disabilitySocial model of disability
The social model of disability is a reaction to the dominant medical model of disability which in itself is a Cartesian functional analysis of the body as machine to be fixed in order to conform with normative values...
was designed by people with disabilities as a tool to help analyze, discuss and combat discriminatory practices faced by people with disabilities. In this model, modes of discrimination are expressed in all areas of public life including work, social functions and public policies, which disable individuals from participation in these arenas. For example, a person with an invisible disability may encounter discrimination while interviewing for a job if he or she discloses their particular impairment. Because western society is organized around a set of work values which emphasizes maximization of productivity and profit while encouraging competition between workers, people with invisible disabilities face discrimination in situations where their particular accommodations might be seen as conflicting with the social values. People with disabilities, visible or not, face this kind of social discrimination in employment practices. However, an individual with an invisible disability such as chronic or debilitating fatigue would be hard pressed to disclose that their particular impairment might conflict with social productivity values. As Colin Barnes suggests, when society values principles based on social necessity, obligation and interdependence, people with disabilities will be valued and included in employment opportunities. The social model of disability helps define what societal values actually disable people through imposed measures, which prevent involvement in public life.
Prevalence in the United States
About 10% of Americans have a medical condition which could be considered an invisible disability. Nearly one in two Americans (133 million) has a chronic medical condition of one kind or another. However, most of these people are not actually disabled, as their medical conditions do not impair normal activities.96% of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and act as if they didn't have a medical condition. About a quarter of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions.
Legal protection
Those with invisible disabilities are protected by national and local disability laws, such as the Americans with Disabilities Act.The Rehabilitation Act of 1973 has been amended several times such that the definition of “handicapped” includes the statement, “any person who... (C) is regarded as having such an impairment” .
This particular defining point of “handicapped” puts the assessment of impairment in the hands of observers who may or may not regard others as having an impairment. For people with disabilities, invisible or not, this creates a space for discriminatory practices which stem from the observer’s perception of who is disabled and who is not.
Further reading
- Sveilich, C. (2004) Just Fine: Unmasking Concealed Chronic Illness And Pain. Avid Reader Press. ISBN 0-9700150-4-6.