Blindness and Vision Loss

Visual impairments include total blindness from birth; the gradual loss of vision, such as retinitis pigmentosa (RP), muscular disorders, such as strabismus, or “crossed eyes,” and loss of acuity across the visual field, such as tunnel vision (Rosenthal & Cole, 2005). People who wear eyeglasses or contacts are not considered to have a visual impairment (nor are they protected under the Americans with Disabilities Act [ADA]) because the provision of widely used and easily obtainable adaptive technology (eyeglasses and contacts) restores the individual to full functioning. Indeed, testing for vision loss takes into account the individual’s “best corrected vision.”

The age distribution of vision loss is different from other types of disabilities (Table 1.2). Blindness and severe vision loss typically occur at the beginning of life (before age 1) or at the end of life. It is estimated that 60% of all visual impairments occur before the age of 1 year. More than 100,000 Americans have RP, a degenerating disability that destroys the center of the retina and for which there is no cure. Most individuals with RP are blind by the age of 40. Relatively speaking, there are few individuals who become blind in middle age. By the year 2030, an estimated 6.3 million Americans will have some form of macular degeneration, which results in blindness or vision loss (Brain Awareness Week, 2019). Macular degeneration is most common among elderly people.

Another interesting aspect of blindness is that it is considered the disability with the least stigma. The general public, mostly IWODs, typically do not blame individuals for their blindness and, mistakenly, IWODs think that they understand blindness. Finally, blindness is a disability for which there are objective and standardized diagnostic procedures that include measuring visual acuity. The best estimate of the number of Americans (of all ages) with visual impairments is 1.5 million, although disability demographers caution that vision impairments are underreported.

A large percentage of visual impairments have no known cause. Degenerative conditions, affecting the retina or optic nerve including RP, retinal detachment, and glaucoma are common causes. Genetic factors cause vision loss, such as malformation of the eye or blindness, and this may be acquired from infections, accidents, or tumors.

Presently, there are a larger percentage of individuals with vision impairments than ever before in the United States. However, advances in medicine, especially neonatal medicine, have greatly reduced the number of infants born with blindness. The answer to the puzzle is the larger number of elderly people in the American population and vision loss is quite common among the aging. Vision loss is a secondary condition of diabetes, a condition that affects millions of Americans. Macular degeneration, another common disability among older individuals, causes blindness.

Two factors have been eliminated that, in the past, contributed to the high number of infants who were born blind. These two factors are maternal rubella (a pregnant woman contracting German measles) and excess oxygen administered to premature infants, which resulted in retrolental fibroplasias. There is now a rubella vaccine and incubators developed in the 1960s control the amount of oxygen given to infants. However, there are many adults, born before 1960, who are blind because these medical innovations were not available.

Individuals with severe vision loss cannot learn by observation or demonstration and those with congenital blindness have no memory or visual experiences of such concepts as color, distance, depth, or proportion. Falvo (1991) explained:

Erik Weihenmayer, a blind man who climbed Mt. Everest, became totally blind as a teenager as a result of a degenerating condition. He was a skilled, experienced climber before he became blind. Also, the course of his blindness, gradual degeneration, allowed him time to adapt and accept his eventual blindness. Interestingly, his blindness proved to be an asset on Everest because he was highly skilled at night climbing (which his sighted companions were not) and his keen sense of touch and hearing alerted him to the presence of crevasses. Weihenmayer could “feel” snow which “sounded” hollow. The one adaptation to his blindness that was not available was his well-developed sense of touch because he had to wear gloves. This description of Weihenmayer’s assets and compensations does not mean that it is easier to mountain climb when one is blind. It does say that his team of climbing companions assisted him, especially when vision was required; but Weihenmayer also contributed to the climb, using abilities that his sighted companions did not have. Incidentally, one of the greatest contributions Weihenmayer provided his sighted climbing companions was funding and sponsorship. The National Federation of the Blind and the Glaucoma Society funded many of Weihenmayer’s climbing expeditions. In the first few pages of Weihenmayer’s book, Touch the Top of the World: A Blind Man’s Journey to Climb Farther Than the Eye Can See (2001), he expresses his need to be a fully contributing member of the Mt. Everest team:

Hearing Loss and Deafness

Hearing loss and deafness can be congenital (present at birth) or acquired at a later time. Most deaf infants are born to hearing parents. Individuals with hearing impairments have achieved some degree of recognition and integration within the broader American culture (Moore, 1987; Smart, 2009b). College students are familiar with sign language interpreters in the classroom; we all are able to watch television with closed captioning, and many of us have a grandparent or great grandparent with some degree of hearing impairment (see Figure 1.1).

However, deafness and hearing impairments differ from other types of disability because they bring additional barriers and unique complications: (a) Speech may be impaired, especially in the case of congenital deafness; (b) many individuals with hearing impairments are isolated and are excluded from employment; (c) parents with deaf children must make important decisions about their children’s education very early in the child’s life, including whether the child will be educated in a community school or a residential school for the deaf and whether the child will learn American Sign Language (ASL) or try to become a speaking person; (d) many individuals with severe hearing loss attend residential schools, being required to leave their families and homes at a very young age; and (e) deafness is the only type of disability that is considered, by some, to be a culture with its own language and culture, rather than as a disability, pathology, deviance, or impairment. The Deaf Culture has a long and rich history of providing an environment for deaf people, producing art and literature, and, most especially, advocating for the deaf.

FIGURE 1.1

Age at which hearing loss begins.

Source: National Health Interview Survey. (2007). Age at which hearing loss begins (Chart created by the NIDCD Epidemiology and Statistics Program). Retrieved from https://www.nidcd.nih.gov/health/statistics/age-which-hearing-loss-begins

The cause of 25% of all hearing loss is unknown. Hearing loss is measured in decibels and, therefore, the levels of hearing loss are diagnosed using standardized, objective procedures. However, the most important distinction of severe hearing loss/deafness is whether the loss is congenital or acquired later in life. Typically, those with congenital deafness experience great difficulty in learning speech and many never learn speech. Those who experience late-onset deafness cannot hear themselves speak (or anyone else), but they can speak. Congenital hearing loss is often caused by hereditary, genetic factors, such as those that cause otosclerosis and prenatal disease, such as rubella. One expert estimated that 35% to 50% of all cases of congenital deafness are the result of genetic conditions.

Acquired deafness is often caused by postnatal infection, such as scarlet fever, measles, mumps, influenza, typhoid fever, meningitis, or otitis media (ear infections). Helen Keller and her brother had a fever, which was never diagnosed at the time. It was thought that both children would die; however, Helen’s brother died and Helen survived. Helen was both deaf and blind. Obviously, the development of antibiotics has greatly reduced the incidence of deafness from infection. Hearing loss, including deafness, can be caused by environmental factors, such as physical abuse and prolonged exposure to loud noise.

Hearing impairments may become very rare due to a combination of medical and technological advances. Antibiotics cure infections and surgical procedures repair structural anomalies in the ear. Cochlear implants are surgically implanted into the ear (called the cochlea), and provide a small electrical current that stimulates the auditory nerves and provides the sensation of hearing. Other types of technology are available including digital, programmable hearing aids and disposable hearing aids. Hearing aids are programmed to amplify the frequency at which the individual cannot hear. Therefore, hearing aids are custom-designed and programmable.

Dual Sensory Loss: Deaf/Blindness

Helen Keller is perhaps the most famous individual who was deaf and blind. The fact that the general public can name only one deaf/blind individual (Helen Keller) illustrates the low incidence of the disability and the severe communication deficits of deaf/blindness. Before Helen Keller, individuals (including children) who were blind and deaf lived with their families, never attended school, and communicated with gestures. Unlike Helen Keller, they did not attend college, and there were no plays or movies created showing their lives. These other deaf and blind individuals lived in obscurity. As with any low-incidence disability, services and education are very difficult to obtain and there are not many professionals trained to work with individuals with low-incidence disabilities. In addition, children with low-incidence disabilities are typically educated in residential schools.

A biographer of Helen Keller explained the disability of D/deaf-blindness:

Now, almost 50% of all deaf/blind individuals have Usher syndrome, a genetic condition characterized by hearing loss and gradual loss of vision due to a condition called RP, in which the individual begins to experience vision loss in adolescence and gradually loses more and more until middle age, when he or she becomes totally blind.

Mobility Impairments

The category of mobility impairments covers many different types of disabilities, including spina bifida, CP, spinal cord injuries (SCIs), paraplegia; quadriplegia; muscular dystrophy, amputations, including congenital limb deficiencies; and motor neuron diseases, such as Lou Gehrig’s disease or muscular dystrophy. Mobility impairments interfere with the individual’s movement and coordination and most require some type of assistive technology, such as a cane or a wheelchair.

Most mobility impairments are visible to others and many individuals with mobility impairments experience other disabilities such as hearing loss or an intellectual disability. Causes include hereditary genetic causes (muscular dystrophy) or lack of oxygen at birth (CP) or abnormal fetal development (congenital limb deficiency). Trauma causes a significant number of orthopedic impairments, such as SCIs (see Figure 1.2). Eighty percent of all individuals with SCIs are men. This is an interesting statistic; however, the fact that most SCIs are in men means that many treatments and services are often not designed with women in mind. How many women wheelchairs athletes are there? In the following excerpt, note that Herr’s primary self-identity is a mountain climber, not an IWD or individual with an amputation.

FIGURE 1.2

Causes of spinal cord injury in the United States since 2015.

Source: National Spinal Cord Injury Statistical Center. (2018). Facts and figures at a glance. Birmingham: University of Alabama at Birmingham. Retrieved from https://www.nscisc.uab.edu/public_pages/FactsFiguresArchives/Facts%20and%20Figures%20-%202018.pdf

Autoimmune Diseases

Autoimmune diseases, such as rheumatoid arthritis, often cause mobility impairments. The immune system attacks the joints and slowly destroys them. Women are almost three times as likely to develop rheumatoid arthritis, with ages 20 to 45 as the peak onset years.

Motor neuron diseases include amyotrophic lateral sclerosis (ALS; commonly known as Lou Gehrig’s disease); polio, and muscular dystrophy. ALS is a progressive, terminal disease in which the motor neurons degenerate and are replaced with scar tissue. ALS is more common in men and, while it does not affect cognitive or sensory functioning, it results in muscle weakness, including swallowing, speech, and breathing muscles. Age of onset is typically during middle age; 47 is the average age of onset. Most patients die between 2 and 4 years after the onset of symptoms, but 20% live 5 or more years after onset (Bronfin, 2005; National Disability Policy, 2014)

Mobility Impairments

Like many congenital disabilities, there is a wide range of severity in CP. CP occurs when the brain is injured in the fetal period, during the birth process, or in early childhood. Perhaps the most common cause of CP is lack of oxygen (anoxia) during the birth process. CP is a lifelong disability because the brain injury is permanent. In mild cases, there are symptoms that are not very visible and in severe cases, there are muscle disorders, such as accuracy of muscle movement, and involuntary movement that are visible. Falvo (1999) described these symptoms: “Some individuals with cerebral palsy have ataxia (disorder in the accuracy of muscle movement), which affects their balance and coordination of gait. Still others have dyskinesia, involving unwanted, involuntary movement muscle movements. Specific types of dyskinesia include slow writhing; purposeless movements (choreoathetosis). Some individuals have a combination of spasticity, ataxia, and dyskinesia.” If other parts of the brain are injured, additional problems, such as vision and hearing impairments, or seizures, or intellectual disability result. Experts expect an increase of the incidence of CP as the number of extremely low-birth-weight infants survive. This is not to say that all low-birth-weight babies will have CP (or any other disability). Rather, the probability of CP is greatly increased in these infants and physicians provide respiratory support to the infant,immediately following birth. Also, in utero treatment (treatment given to the fetus in the uterus) can be provided. Twins and triplets and other multiple births have an increased probability of CP because infants in multiple births tend to be of low weight.

Spina bifida is a congenital disorder in which the spinal column has spaces in one or more vertebrae, thus the name: “Bifida” means divided and spina bifida is divided spine. In mild cases, there are few, if any symptoms, while in severe cases, muscle paralysis, loss of sensation, and loss of bowel and bladder control are much more likely. In one type of spina bifida, the membrane surrounding the spinal cord pushes out through an opening in the spinal cord and in another type of this disability, both the membranes and the nerves of the spinal cord push out through the opening. Physicians describe the condition as: “extrusion of abnormally formed neural elements” (Gold, 1996, p. 461). Surgery, or multiple surgeries, is required to repair these defects and to prevent further or permanent damage to the spinal cord. Infants born with spina bifida may also have hydrocephalus (fluid on the brain), which can result in intellectual disability if the fluid is not surgically drained and a shunt placed to continuously drain the fluid as it accumulates. Children and adults with spina bifida are susceptible to infections in their spine and, because of this, they typically experience several hospitalizations each year. Spina bifida is a lifelong disability, with severe impairments in many areas of functioning.

In the last decade, there has been a 27% decrease in the number of infants born with spina bifida, which is attributed to the folic acid supplements added to grain products, such as cereal. It is important that pregnant women take folic acid because folic acid aids in neural tube development. However, Gold (1996) explained that there are many causes of spina bifida: “Although folic acid supplementation plays a role in prevention, the etiology for neural tube defects is likely multifactorial and has a genetic basis.” (p. 463)

Muscular dystrophies (there are several types) are hereditary conditions that are characterized by progressive muscle degeneration. Congenital muscle dystrophy is apparent at birth and, in severe cases, obstetricians and pediatricians must guard against respiratory failure in the newborn. The infant shows weakness and restriction of joint movement (Bronfin, 2005).

There is a large number of causes of mobility impairments, including birth trauma, later-in-life injuries, and degenerating conditions. John Hockenberry, a reporter for National Public Radio and Middle East correspondent, describes the variability in paraplegia and quadriplegia:

Chronic Illness and Health Disorders

We have discussed some chronic illnesses in the section on Mobility Impairments and Autoimmune Diseases. In addition, diabetes, cardiovascular disease, brittle bone disease (osteogenesis imperfecta), rheumatoid arthritis, Parkinson’s disease, ankylosing spondylitis, and Huntington’s chorea are recognized to be disabilities. All of these conditions limit functioning and are chronic, lifelong conditions and are therefore recognized as disabilities.

Disfigurements

Due to advances in surgical techniques, individuals with disfigurements have more options to reduce or remove the disfigurements. Interestingly, disfigurements typically do not include functional limitations, but they are still legally considered to be a disability (Love, Bryne, Roberts, Browne, & Brown, 1987; Macgregor, 1951; Macgregor, Abel, Bryt, Laver, & Weissmann, 1953; Patterson et al., 1993). It is the stigma and other negative responses of society that limit individuals with disfigurements. For example, lower limb amputation (one or both of the legs) is considered to be more functionally impairing while upper limb amputation (one or both of the arms) results in fewer functional limitations. However, upper limb amputation is thought to be a greater disability because of the disfiguring aspects of lacking one or both arms. The majority of disfiguring disabilities have an acute onset, many of them traumatic. For example, individuals who experience severe burns, after medical stabilization, often have lifelong facial disfigurements, although there are no functional limitations.

Intellectual Disabilities

The preferred term is “intellectual disabilities,” instead of the stigmatizing label of mental retardation. However, many diagnostic manuals use the diagnosis of mental retardation in very precise, standardized ways, and, therefore, the term “mental retardation” will be used, but only when necessary. An estimated 3% of the American population has an ID, 90% of whom have mild ID (Joseph P. Kennedy, Jr. Foundation, 1991). Severe ID, therefore, is relatively rare. IDs are more than 7 times as prevalent as blindness or deafness and 10 times more prevalent than physical disabilities. While there are standardized and quantifiable levels of severity (mild, moderate, and severe), the diagnostic procedures include paper-and-pencil standardized intelligence testing and clinical impressions. As expected, it is more difficult to diagnose a mild ID than it is to diagnose severe or profound IDs. Frequently, lack of educational and cultural opportunities or lack of English-language skills is difficult to distinguish from a mild ID. Moderate IDs are typically discovered when children enter school and severe and profound IDs are apparent at birth because there are often other disabilities present, such as sensory loss, mobility impairments, seizure disorders or a combination of these disabilities.

ID is defined by the American Association on Intellectual and Development Disabilities (AAIDD; formerly known as the American Association on Intellectual Disability, or AAMR). The AAIDD define ID as “significantly subaverage general intellectual functioning resulting in or associated with concurrent impairments in adaptive behavior, and manifesting during the development period” (Grossman, 1983, p. 1). Social functioning is included in the definition of adaptive functioning (AAIDD, 1992).

In order to distinguish intellectual disability from cognitive disabilities that occur later in life (e.g., senile dementia), this diagnosis is determined in the individual’s developmental period, which is birth to 22 years (Drew, Logan, & Hardman, 1992). Individuals with IQs in the range of 55 to 70 would be considered to have mild ID; individuals with IQs in the range of 40 to 54 are considered to have moderate ID, and individuals with I.Q.s below 40 are considered to have severe ID. The level of adaptive functioning, or better stated, the level of needed support is also taken into consideration.

Most ID is associated with neurological damage. Damage to the central nervous system, typically occurring at birth due to lack of oxygen, abnormal fetal position, or infections often result in IDs. However, some cases of IDs are caused by known organic causes. These include maternal infections, maternal use of alcohol, or incompatible blood types between the mother and the fetus. Changes in metabolic functioning, especially fragile X syndrome, result from genetic-chromosomal factors and often leads to an ID. Down syndrome is caused by a chromosomal defect in the developing fetus. (Dr. Landon Down was the physician who first described Down syndrome.) Many conditions are named for the individual who first described them, such as Alzheimer’s, Turner’s syndrome, Asperger’s syndrome, or Tourette’s.

A pediatrician (Batshaw, 2001) made clear distinctions between the terms developmental delay, developmental disability, and mental retardation:

Learning Disabilities

LDs are becoming one of the most often diagnosed disabilities, meaning that the actual rate of LDs may not be increasing as much as it appears, but simply that more and more individuals are being screened and, therefore, there are more frequent diagnoses. Once considered a disability that the individual “outgrew,” it is now known to be a lifelong disability.

Diagnosis of an LD first begins by eliminating other possible causes, such as a sensory loss or an intellectual disability (National Disability Policy, 2014). Children with suspected LDs are initially identified because of a discrepancy between their measured academic potential (IQ) and their actual academic performance. The causes of LDs can only be speculated, although functional magnetic resonance imaging has shown that children with LDs have reduced physiological functioning in the cerebellum. Other suspected causes include lack of communication between the hemispheres of the brain or that one hemisphere is larger than the other (termed “asymmetrical development”).

Autism Spectrum Disorder

In 1943, Leo Kanner described a group of 11 children who displayed a similar pattern of symptoms that were very different from those of other childhood behavior disorders. Kanner used the term “early infantile autism” to describe the disorder (Morris, Morris, & White, 2005). “Autism spectrum disorder” is a term created by the APA and is used to describe a pattern of neurologically based impairments in social interactions and communications

According to Morrison (2014),

Deficits in social interaction may be noticed as early as 6 months when parents notice their infant is not making eye contact, is not smiling reciprocally or wanting snuggling, and is displaying no desire for physical closeness. Motor milestones are typically on time for infants with ASD, but it is the type of motor activity that is unusual. Many of these behaviors are termed “stereotyped” or “ritualized” or “inflexible,” meaning that there is no observed purpose to these behaviors, other than to reduce stress. Repetitive twirling, twisting, rocking, flapping of the hands, and head banging are example of stereotyped behaviors.

Deficits in communication include total failure to react to others, engaging in repetitive monologues, and lack of body language. Those with ASD often fail to understand abstract meaning, jokes, or sarcasm. Often they ask the same questions to the same people over and over.

Sensory sensitivity often occurs, including avoidance of bright light, loud noises, and rough textured fabrics. While many with ASD experience an intellectual disability, a few individuals have enhanced cognitive skills in a narrow area, such as music, math, and rote memorization; however, these individuals are unable to function independently. Due to all these deficits, ASD is considered a severe disability that greatly affects family life.

The diagnostic criteria of ASD in the DSM-5 differ from the same diagnosis in the DSM-IV-TR. The criteria did not change, only the name of the diagnosis and its categorization. When disabilities are measured on a continuum (or spectrum or dimension), one end of the continuum is low functioning (extreme and severe) and the other end is high functioning. In the case of ASD, Asperger’s was the diagnostic label given to individuals with the manifestations of autism, but who function at higher levels and have no language deficits. Typically, those formerly diagnosed as having Asperger’s were probably viewed by others as odd, especially in social situations, but they often had remarkable skills and abilities that often led to productive careers. The old joke is that Silicon Valley is full of people with Asperger’s. Perhaps due to the Internet, those with Asperger’s have a collective positive identity, calling themselves “Aspies,” and referring to IWODs in somewhat belittling terms, “neurotypicals.” This can be considered a type of “pride” movement.

In contrast to diagnoses based on a continuum, there are diagnoses based on categories. In categorical measurement, diagnoses are considered qualitatively different and in diagnoses measured on a continuum, diagnoses are considered quantitatively different. Blindness and deafness would be categorical measurement while ASD is measured on a continuum, with diagnoses based on differing levels of severity. Continuum diagnoses are often difficult to make because some type of cut-off point must be determined—what separates medium-functioning ASD from high-functioning ASD? Where do you draw the line? Also, if service provision is tied to a diagnosis, clinicians may be tempted to “fudge” and render a diagnosis of ASD when the individual did not meet all the criteria.

Another problem with disabilities and diagnoses based on a continuum is that, to the public, individuals with high functioning diagnoses represent the entire continuum. Ask someone to name a person with Asperger’s or high functioning ASD and he or she will state Dr. Temple Grandin, but will probably be unable to name anyone else. Nonetheless, there are many individuals with low functioning autism who are unable to communicate, have severe intellectual disabilities and are incontinent and, therefore, are very quantitatively different from Dr. Grandin. One mother of a child with low-functioning ASD expressed this concept:

This mother realized that whatever group represents the entire continuum (which is not possible) is the group who receives funding, access, and social acceptance.

In the following chapters, we discuss the meaning of diagnoses for the individual and his or her self-identity. In the popular magazine The Atlantic, an article about the removal of the diagnosis of Asperger’s from the DSM-5 included an excerpt of someone who felt that his self-identity had been changed without his permission. For John Elder Robison, the revision is an abrupt and unwelcome assault in an all-important identity.

Mental Illness

Psychiatric disabilities are diagnosed using the DSM-5 (APA, 2013). This manual provides information such as diagnostic criteria (those symptoms necessary for the diagnosis to be made), prevalence rates, course of the disorder, and gender features; but the DSM does not give treatment plans. The diagnostic criteria are clearly described and, because of this, there is a consistency in diagnosis among various practitioners. The DSM is a serial endeavor, meaning that since 1952, there have been many editions (Smart & Smart, 1997). The use of the manual requires specialized training and is typically used by psychiatrists, psychologists, and social workers. While most disorders listed in the DSM are defined as disabilities, several disorders such as kleptomania, pyromania, or sexual addiction and other behavioral addictions are not considered to be disabilities and, therefore, individuals with these disorders would not be protected under the Americans with Disabilities Act (ADA) nor would they be eligible for government-funded disability programs, such as VR.

According to the APA (2013), mental illness includes schizophrenia, delusional disorders, bipolar affective disorders, major depression, and anxiety/panic disorders. Many psychiatric disabilities have courses that are episodic, or relapsing, in which symptoms may disappear for a time and then reappear. Relapses or onset of symptoms is called the “active phase” and the disappearance of symptoms is termed “remission.”

There is a wide range of subtypes of schizophrenia; however, all of these include distortion of reality and disturbances of thought, speech, and behavior. Schizophrenia affects many areas of functioning and is a lifelong disability. Most cases of schizophrenia begin in late adolescence and early adulthood; although there are a few cases of onset in middle age. Men tend to have experienced an earlier onset (ages 20–24) than women, but women tend to have a more severe form of schizophrenia than men. Schizophrenia is also more prevalent in men, with a ratio of three men with schizophrenia to every two women who develop this disability.

The characteristic symptoms of schizophrenia are delusions, hallucinations, disorganized speech, and bizarre behavior. Hallucinations are sensory experiences that seem real to the individual, but for which there is no external stimulus. “Hearing voices” is an auditory hallucination. Delusions are erroneous beliefs that are firmly held despite clear evidence to the contrary.

Mood disorders, or affective disorders, occur at least 15 to 20 times more frequently than schizophrenia (Butcher, Mineka, & Hooley, 2010). Mood disorders are divided into two broad categories—depressive disorders and bipolar disorders. Affective disorders are not always considered to be disabilities; some government agencies recognize the various types of depression (including bipolar depression) as disabilities and others do not. Those agencies that acknowledge depression to be a psychiatric disability do so because of the pervasive impairment depression causes in all areas of the individual’s life. Falvo (1999) described severe depression as “incapacitation … so great that individuals are unable to attend to their own daily needs, such as basic hygiene and nutritional needs” (p. 133). Depression can be fatal since about 10% of those with depression successfully complete suicide. Not all depression is considered to be pathological; for example, grief following the death of a loved one is not considered to be a disorder/disability unless it is unresolved after a lengthy period of time. This is an illustration of the adage, “unpleasant does not mean pathology.” In other words, everyone has “down” or “blue” days and, if this were the only manifestation, the individual would not receive a diagnosis of depression. The depressive symptoms must be long term, typically unremitting, and impair the individual’s functioning.

The depressive disorders are characterized by some combination of these symptoms, feelings of sadness, hopelessness, decreased energy, feelings of worthlessness and guilt, disturbances in sleep, eating, and activity level, and inability to concentrate. There is considerable overlap in the symptoms of depression and bipolar disorder; however, individuals with bipolar disorder also experience manic episodes in which they have an inflated self-esteem, decreased need for sleep, and become excessively involved in activities, either work or pleasure. It is estimated that between 10% and 50% of individuals with depression will, at some point, have at least one manic episode. Manic episodes tend to begin suddenly. Strictly speaking, depression without manic episodes is termed “unipolar depression” and “correct differentiation” between unipolar and bipolar depression is important (but often difficult) because different treatments are used.

The most frequent age of onset for depression is the early 20s, but depression can be diagnosed in infants, children, and adolescents. Often, individuals are hospitalized in order to stabilize the symptoms. Typically, the more severe depressions have an acute onset (sudden) while the less severe depressions have a gradual (insidious) onset.

Psychiatric disabilities, including mental illness and affective disorders, require lifelong management and there are few total cures. Thus, we can see that psychiatric disabilities parallel physical and cognitive disabilities in that they are chronic, not curable, and require a lifetime of careful management and monitoring. The one difference between psychiatric disabilities and other types of disabilities may be the frequency and intensity of relapses.

Aging of the Population

Rate of disability is positively correlated with age. As individuals age, they experience a greater probability of acquiring a disability. Old age and disability are highly correlated. This correlation holds true on an individual basis and for large groups of people. Therefore, nations that have “graying” populations will have higher rates of disabilities and those nations with young populations will have lower rates. Medicine and medical technology have lengthened the lifespan. Arthritis, diabetes, mobility impairments, and sensory impairments (vision and hearing) are disabilities often associated with the elderly. The following are some examples of the way in which the longevity revolution has increased the rate of disability.

People With Disabilities Are Living Longer

The longevity revolution has allowed IWDs to live longer, although not as long as those who do not have disabilities. So, as the rates of congenital and acquired disabilities continue to rise, the lifespans of these individuals are lengthened. Nearly 90% of children with disabilities survive into adulthood (Jones, Stanford, & Bell, 1997; Lublin & Larsen, 1998, 2006; White & Lublin, 1998). In the past, parents of children with congenital disabilities, such as CP, Down syndrome, or intellectual disability, were told “take your baby home and enjoy him or her. You won’t have this baby for long.”

Children with Down syndrome (a genetic condition that causes intellectual disability) are living twice as long today as they did 20 years earlier. In 1983, the average lifespan of an individual with Down syndrome was 25 years and in 2007, the lifespan was 56 years; moreover, the lifespan for these individuals is expected to increase further. This increase is due to advances in surgery and the use of antibiotics (Smart, 2001, 2009d).

These increased lifespans will create the need for more and varied programs for IWDs, especially gerontological programs, and will require medical practitioners to enlarge their scope of practice to include skills in treating various types of disabilities in individuals with a wide range of developmental stages. In the example of Down syndrome, sex and marriage education will become important services to provide to individuals with this syndrome. More importantly, the experience of disability will be different for the individual and his or her family (Sutkin, 1984). Harriet McBryde Johnson (2003, 2005) was a disability rights lawyer who died in 2009 at age 51. She was born with a degenerative muscle disease and her parents were told that she would die in early childhood. In an article entitled “Too Late to Die Young,” she explained her response to living past the time that doctors predicted that she would die.

Johnson (2005) concluded: “My plan to die young hasn’t worked out.… It’s too late to die young” (p. 46).

The next two causes of increasing rates of disability are termed “statistical causes,” meaning that the actual number of IWDs did not increase; rather the way in which disability is defined and counted has changed.

Liberalization and Expansion of the Definition of Disability

Not very long ago, all disabilities were physical disabilities. Disabilities such as LDs, mental illness, and alcoholism were not thought to be disabilities and the individuals who experienced these services were not eligible for government services or funding. After 1990, and the passage of the ADA, individuals who do not have a documented disability as defined by the ADA would not be protected under the ADA. The old adage is, “If you don’t have a label, you don’t get services” is true. More recently defined as disabilities are AIDS, post-polio syndrome, and chronic fatigue syndrome.

LDs provide an illustration of the liberalization of the definition of disability and the ways in which such liberalization results in decreased stigma from the general public and allows for accommodations and services (Cruickshank, 1990). Children, usually boys, with LDs were thought to be stupid, lazy, and oppositional. Often, their family experienced stigma because schoolteachers felt that the family did not value education. Instead, these children had central nervous system impairments, which are now beginning to be seen in magnetic resonance imaging. Butcher et al. (2010) explained:

These painful episodes result in poor self-concepts. If powerful and authoritative individuals, such as teachers, tell a child something, the child often believes it. John R. Horner described his self-image:

Horner flunked out of the University of Montana six times, but later “his brilliant synthesis of evidence … forced paleontologists to revise their ideas about dinosaur behavior, physiology, and evolution” (West, 1994, p. 334).

When large-scale screenings are used, more disabilities are discovered. For example, in elementary schools, there are screening tests for both hearing and vision. In many hospitals, simple hearing tests are given to all newborn babies. Frequently, there are announcements for screening for depression at universities. Screening tests discover individuals who might (or might not) have the particular disability and send these individuals for further diagnostic testing by highly skilled professionals.

Different government agencies define disability differently (LaPlante, 1991, 1993, 1996, 1997). For example, some agencies include affective disorders, such as depression, in their definition of mental illness and other agencies do not consider affective disorders to be a mental disorder. Those agencies that define mental illness more broadly will report higher rates of the disability of mental illness. Some government agencies only include “work limitations,” thus eliminating children and elderly IWDs.

Overdiagnosis, however, is a negative aspect to broadening the definition of disability. For example, there is some disagreement over the incidence of autism, the fastest growing disability in the United States. Indeed, some have termed the large number of newly diagnosed autism cases to be an “epidemic.” Autism is a childhood developmental disorder that involves a wide range (or “spectrum”) of deficits, such as language, motor, and social skills. Some experts assert that autism is overdiagnosed due to the fact that a child must have a diagnosis (or a “documented disability”) in order to be eligible for services and accommodations. Therefore, children with fairly mild impairments may be diagnosed as autistic, because physicians and psychologists understand that the child must have a disability and autism seems to “fit” the child’s problems best.

More Accurate Counting

There is a difference between the number of disabilities and the number of reported disabilities. Smart (2016) explained:

In the same way that the profession and academic discipline of gerontology was a result of the growing number of elderly people, perhaps a new profession and academic discipline will emerge as a result of the growing number of IWDs.

The combination of longer lifespans in IWDs and the liberalization of the definition of disability will serve as an impetus for developmental psychologists to consider the developmental stages and transitions of IWDs. For example, the first generation of adults who were formally diagnosed with LDs as children and (hopefully) received services and accommodations can reflect on their experiences and, in so doing, help parents, teachers, and other professionals to provide sensitive, supportive, and effective services (McNulty, 2003).

With these increasing numbers of IWDs, societal perceptions of disability will change (Linton, 1998). For example, in the future, the use of hearing aids will not be viewed any differently than the use of eyeglasses. There is little, if any, stigma in wearing eyeglasses; however, those who need hearing aids often refuse to use them because they know that this type of sensory adaptive technology can be stigmatizing.

Degenerating Course Disabilities

In the brief section that described disabilities, we saw that some disabilities were terminal, such as ALS or Lou Gehrig’s disease. Those with ALS, on average, die 3 years after diagnosis. Many other disabilities are degenerating; but they do not necessarily result in death. Degenerating disabilities have a steady rate of worsening of symptoms and degenerating episodic disabilities have cyclic periods of degeneration coupled with periods of remission. In both types of degenerating courses, the disability becomes worse.

Accepting the reality of the degeneration of abilities and functioning and facing greater limitations and losses places great demands on the individual and his or her family. As the disability degenerates, the environment tends to become more and more inaccessible. Robert Neumann (1988) described the damage to his joints caused by rheumatoid arthritis as “Joint-of-the Month Club.” (Note also his relief in being diagnosed “at last.”)

Are IWDs Part of Intersectionality?

Intersectionality occurs when an individual identifies with two (or more) disenfranchised groups or others perceive the individual to belong to two or more disenfranchised groups. In 1989, Kimberle Crenshaw, a law professor at the University of California Los Angeles (UCLA) and at Columbia University, developed the idea of intersectionality in her words, “as a prism to see certain problems.” “Intersectionality” is a term used to describe the situation in which an individual is oppressed or experiences stigma, prejudice, and discrimination for two or more minority statuses, thus increasing the stigma and making it difficult for the individual to determine the specific source of prejudice. For an African American lesbian with a psychiatric disability, the prejudice may be greater than fourfold, but might increase exponentially when each minority status is considered. Those in disenfranchised groups also have fewer resources and a narrow range of opportunities and the effects of intersectionality reduce the number of opportunities.

Those who describe and explain intersectionality rarely mention disability as a minority status, nor acknowledge the prejudice and discrimination directed toward IWDs. Browsing in any bookstore, including online, there are sections devoted to each of these groups, such as African American Studies, Women’s Studies, and LGBTQ Studies. There are no sections assigned to Disability Studies and the few books on disability are found in the Health section. Therefore, disability is still viewed as a medical issue and as deviance, and not as diversity. When disability rights advocates have tried to join other rights-based groups, such as women’s, LGBT, or racial groups, they report being asked, “What’s wrong with you?” while other new members are asked, “Who are you?” Intersectionality advocates have paid little attention to IWDs.

There can be no doubt that IWDs are not considered the moral and legal equivalent of most Americans. On that basis, and their centuries of oppression in almost every society and culture, IWDs should have a place at the intersectionality table. Like other disenfranchised groups, IWDs consider themselves to be “normal,” ordinary people who have a great deal to contribute to their societies.

Possible Reasons Why Other Disenfranchised Groups Do Not Include IWDs

Having laid out the arguments for including IWDs in the intersectionality discussion, we will consider the drawbacks. First, there is nothing inherently negative about any of the other group identities, gender, race, and sexual choices. But there is something inherently negative about disability. Simply stated, it is better not to have a disability. Perhaps for this reason, other groups organized to gain social justice do not consider IWDs. There would be no discussion of aborting or euthanizing individuals in these other groups and there are no television charity telethons for racial, ethnic, gender groups, and more commonly, there are few attempts to “fix” individuals in racial, ethnic, gender, or LBGTQ groups.

The second rationale for failing to include IWDs in discussions on intersectionality concerns the public perception that all of the needs of all IWDs are met by the medical professions. For example, in order to be protected by the ADA, the individual must document a disability. In a somewhat twisted logic, it is thought that if the medical needs of IWDs are met, IWDs should not expect civil rights. The third rationale concerns the public perception of IWDs, that they are defined only by the disability. In contrast, individuals in other disenfranchised groups are perceived as having a gender, a race, a profession, a family, and friends. IWDs have only been viewed as their disability (and disability is almost always viewed negatively.) Finally, those who are considered “the majority” do not fear becoming a racial minority, or another gender. For example, White people don’t fear becoming African American nor do most men worry about becoming a woman. However, most IWODs understand they can, at any time, become a minority person if they acquire a disability. We discuss in later chapters the way in which IWDs who also belong to other disenfranchised groups are treated.

The ADA is not based on the concept of justice where everyone receives the same resources and services, but, rather, on the concept of justice of everyone receiving what he or she needs. Most civil rights laws are based on everyone receiving the same resources and services.

In short, there are questions whether the concept of intersectionality is truly pertinent for IWDs. In this book, however, disability is considered part of intersectionality. The point is: Disability is indeed a negative, but most IWDs manage their disabilities, are proud of their mastery, and do not consider themselves less than anyone else. Furthermore, IWDs are “normal” in the sense that they have the same emotions, same life tasks, and same motivations as IWODs. Many IWDs think that their biggest problem is IWODs, who exaggerate and sensationalize a life with a disability. For example, there are no longer films about racial or sexual minorities that exaggerate, stereotype, and disparage the characters. Today, there are the sad “Movie of the Week” or “After School Special” that portray IWDs solely as symbols for deviance, violence, and pitiful weakness.

This book discusses intersectionality and the way in which IWDs might be included. Certainly, IWDs should be included in the diversity discussion since they have a great deal to add to the broader American culture.