Section 1: Disability is Complicated!

People with disabilities are multifaceted and complex. They work, have families, drive cars, run companies and contribute to the diversity of our country and their communities. They are our neighbors, our friends, our parents and siblings.  They are us!  The treatment of disabled people in history, though, has been one of marginalization, stigma, and discrimination, often using the fact of disability to justify the violation of rights.

Having a diagnosis of a disability simply means that a person has a condition that might require treatment or specialized intervention – or it might not. Just because someone has a disability diagnosis doesn’t mean anything about a person’s ability, competency or character – it just means that the person identifies as having an impairment or a professional has determined that they have a particular physical or mental condition. As you’ll read below, in society we view diagnoses as being scientifically developed and reliable, but they can also be viewed as socially constructed – that is, what is seen as a problem to be fixed in one society may be viewed as quite typical in others.

In Disability Studies, we take the approach that although an individual may have an impairment, it’s the barriers they encounter in the physical environment and the lack of opportunity for employment,  access to education, recreation, and housing that can ‘disable’ an individual.  We see these barriers as representing the larger issue of disabling attitudes in society and pervasive disability oppression.  As workers, advocates, parents or siblings, we hope that exploring disability with a critical eye can help us understand more about the interaction between disability and society, and that what we learn can make us better advocates for ourselves and others.

Although we embrace the social model of disability in disability studies – you’ll learn more about this a bit later –  there are terms that society and professionals use every day to refer to disability. If you’re working in the field, it’s important to understand what the terms mean but also to be able to shift perspective and keep the social model in mind.

In our daily lives, we encounter different systems – the educational system, the medical system, or perhaps a governmental system that may be providing benefits.  Each of these may have a different way of looking at disability, and different criteria for meeting that system’s definition of disability, further complicating our understanding of disability.

Remember, though, that every person is different and is an individual.  Having a particular diagnosis or label only means that a person has a particular set of characteristics that seem consistent with a particular condition.  But even people with the same diagnosis may experience the condition in different ways, with different types of support needs.  So, for example, someone with the diagnosis of Down syndrome may need support in many activities of daily living like dressing or eating, and may need a great deal of support in school.  Another individual with the same diagnosis of Down syndrome may graduate from high school with the same diploma as non-disabled classmates and not need support at home at all.

Physical impairments are conditions that largely affect our senses and mobility – our ability to move through the environment easily.  People with physical disabilities may use assistive devices to help them navigate living – wheelchairs, or walkers, prosthetics, hearing aids, glasses, large print materials, or technology to help them communicate with others.

Sensory impairments affect our ability to see or hear, or to experience the environment the same way people without these conditions do.  Hearing impairments and vision issues like low vision or blindness are included here.  If the sensory issue occurs before age 21, the child may be considered to have a developmental disability.  Some people have chemical sensitivity, so they have different reactions to odors from the kinds of cleaning materials or perfumes in grooming products than others do, and can have very severe reactions. And some people have a sensitivity to particular kinds of light as well.

Spinal cord injuries are caused by accidents, such as automobile crashes, falls, domestic or other violence, or other trauma to the spine.  These can occur at any age.  Depending on where the injury occurs, different parts of the body might be affected and the injured person may use a wheelchair for mobility, or may not have use of their arms.  People with injuries higher up on the spinal cord may use a respirator to help them breathe.

Traumatic Brain Injuries (TBI) are also caused by accidents – falls where a child or adult hits their head, or a soldier experiences shock to the brain caused by a bomb or gunshot wound. These can also be caused by domestic violence or other violence that affects how the brain functions.

Limb impairments can be caused by inherited genetic issues, by injuries caused to a developing fetus (like the umbilical cord wrapping around fingers that inhibits their growth) or by amputations because of accidents, trauma, or chronic illness like diabetes.

Club feet and cleft palates are very common birth defects, and in most cases the cause isn’t known, but is due to a combination of genetic and environmental factors.  In developed countries, these conditions are typically corrected in childhood with surgery, but in much of the world people with club feet and people with cleft palates face social barriers to work and relationships.

Genetic disorders can cause many different disabilities.   DNA – deoxyribonucleic acid -carries the code for all of our genes (a gene is just a sequence of DNA).  When humans reproduce, the DNA from their parents is copied and recombined.  Because humans are so complex, it’s not unusual for parts of DNA to not copy correctly – either some DNA is left out or some DNA is copied too many times.  When a sequence of DNA is left out, it’s called a ‘deletion.’  When DNA is copied to many times, it’s referred as a ‘DNA repeat.’   How these deletions or repeats are expressed in a person depends on which of our 23 pairs of chromosomes has deletions or repeats and how that particular sequence of DNA molecules is expressed in a human being.  ALL of us have both deletions and repeats of DNA in some of our chromosomes and genes, but not all of us have genetic disorders that are expressed in ways that might cause us to be thought of as different from ‘typical’ people.

Black background with picture of DNA strands in blue.

Image by Gerd Altmann from Pixabay.

Developmental Disabilities are a group of disabilities, including ADHD, Autism Spectrum Disorder, Cerebral Palsy, Intellectual Disabilities, Hearing Loss, Learning Disability, Vision Impairments, and delays. These occur before age 21 and are expected to last throughout the lifetime.

Intellectual disabilities are disabilities that occur before age 21 – during a person’s developmental stage of life – and are likely to be lifelong.  A person with a developmental disability may require support in learning (both academic and experiential learning), judgment and reasoning.  Some people with intellectual disabilities can live independently, work, and have families, while some need maximum support in all aspects of daily living.

Common developmental disabilities include Attention Deficit/Hyperactivity Disorder (ADHD), autism spectrum disorder, cerebral palsy, hearing loss, intellectual or cognitive disability, learning disability, vision impairment, or neurological impairments.

Intellectual or cognitive disabilities require some specialized assistance in learning.  There is a wide range of people who have this diagnosis, so we can’t assume anything just because a person has a label of intellectual disability.  Most people with intellectual disabilities are able to acquire information and skills in order to live independently and work as adults.  A small percentage, however, need lifelong maximum support in activities of daily living like eating, showering, and dressing.

There are many causes of intellectual disability, including genetic disorders, falls, malnutrition, environmental pollution, birth trauma, infections, child abuse and accidents.

Autism Spectrum Disorders are very common – according to the Centers for Disease Control from 2017, 1 in 59 children has been diagnosed with ASD.  The criteria for a diagnosis of ASD are complicated.  You can read the Centers for Disease Control criteria for a diagnosis of autism spectrum disorder here.

While ASD is sometimes characterized as a communication disorder, increasingly, some people believe autism is simply a different way of seeing the world, and the behaviors that accompany autism should be viewed as a form of diversity rather than something that needs professional intervention. It’s important to remember that everyone with the diagnosis of ASD is an individual and nothing can be assumed about her or his abilities or need for support simply because of the diagnosis.  Not every autistic person has every trait named in the diagnostic criteria, or experiences the same characteristic in the same way. While there is a growing movement of autistic pride, each autistic person experiences autism in their own way, and each may require different types of support for housing, education, employment, relationships, communication, healthcare, and activities of daily living.  

Learning Disabilities are very common and can be thought of as a processing disorder, where information is process a bit differently than with people who don’t have this disability. One way to accommodate children and adults with learning disabilities is to provide extra time to process information or to express ideas.  Dyslexia (difficulty in reading), dysgraphia (difficulty in writing), and dyscalculia (difficulty with arithmetic), are common learning disabilities.  Another common learning disability is attention deficit/hyperactivity disorder (ADHD) which results in difficulty in sustaining focus.

Cerebral Palsy is a very common developmental disability that causes people to experience stiff muscles or difficulties with coordination that causes a jerky motion.  In some people it causes a continuous writhing motion. Some people with cerebral palsy can walk, while others need to use a wheelchair for mobility.  A small percentage of cerebral palsy is inherited, but most cerebral palsy is caused by birth trauma or another kind of trauma, such as an accident.

Some people with cerebral palsy have cognitive or learning disabilities, while many do not. So like having a diagnosis of any other disability, having a diagnosis of cerebral palsy doesn’t imply anything about intelligence, judgment or ability to work.

Epilepsy is a seizure disorder, where neurons in the brain can cause several different types of seizures.  Some seizures are minor and the individual experiencing them loses contact with the environment for a brief period of time.  Some seizures might cause a person to have repetitive motions for a minute or more.  And some seizures are more involved and cause the person experiencing them to lose control of muscles for a period of time.

Neurological impairments are a collection of conditions resulting from issues with the nervous system that may cause a range of symptoms. Some neurologic impairments are hidden disabilities that result in the need for some specialized assistance.  Some neurological impairments have a genetic component, while others do not. Neurological impairments include narcolepsy, neurofibromatosis, tuberous sclerosis, spina bifida, Prader-Willi syndrome, and Tourette Syndrome.

Legal Issues, Legal Rights, and Disability

Citizens of the United States obtain rights in three different ways: they are enumerated in our Constitution and Bill of Rights; they are enacted through legislation (local, state or federal) and codified in regulations that further explain or interpret the legislation; or they are the result of court decisions that further define our rights, how they should be interpreted and commonly understood.

Citizens with disabilities have the same rights as citizens who do not have disabilities, among them the right to vote, to own property and dispose of it as they wish, the right to marry, the right to privacy, the right to worship, and freedom of speech, and the right to due process.

After World War II and the Nuremberg Trials, an important concept of informed consent became the standard when medical or other interventions are recommended.  This means that a person needs to consent to treatment and needs to understand both the benefits of the treatment and any risks that might derive from the treatment.  If we go in for surgery, we are asked to sign a consent form that details what could happen to us as a result of the surgery or of medications that are prescribed.   Informed consent also applies to issues like behavior management interventions.

One issue that has involved informed consent and is the source of some tension at the moment is the issue of guardianship.  In New York State, the law presumes that anyone who is over 18 can make his or her own decisions. Some individuals with intellectual disabilities may need support in order to make decisions about health care, whether or not to have children, or other life choices.  Parents can retain the power to make these decisions for their adult children with intellectual or developmental disabilities if they go to court and petition to remain their adult child’s guardian.  Sometimes parents are awarded limited guardianship – they can make some decisions for their adult child with a disability, but not all decisions.  Recently a new idea – supported decision-making – is gaining ground.  The idea is that the person appoints someone he or she trusts to assist in making important decisions without giving up her or his rights.

When a person with a disability enters public care (or private care) they often give up some rights or parts of rights in order to be eligible for the care they receive.  For example, if a person is moving into a group home or apartment program that is run by a service agency, s/he might be giving up some rights to privacy or self-determination in order for the service agency to provide what’s needed.  For example, if the person is living with six people and there are two staff members, and five of the residents want to go swimming on Tuesdays, the person who would prefer to stay home may end up going swimming because there is no one to stay home with him or her.  Or if the person is used to having a private room s/he may be living with a roommate, at least for a period of time.  These issues are typically spelled out so that they are clear before the person moves from one setting to another.  While the goal of these organizations should be to provide as much choice as possible – to provide services in the ‘least restrictive environment’ possible, practical issues sometimes mean choices may be limited.

There are five basic laws and regulations that affect disabled children and adults. These are explained below:

The Rehabilitation Act of 1973:  Sections 504 and 508 (1973)

The Rehabilitation Act of 1973 is very important because its Section 504 mandated that any public entity receiving federal funds needed to be accessible to individuals with disabilities.  Since hospitals, federal courts, transportation systems and educational institutions received federal funds, what this meant was that for the first time people who had mobility or sensory issues could take advantage of higher education or the court system, or have access to public transportation.  Section 508 mandated that internal federal systems – for example, the telecommunications systems- had to be accessible.  This opened the door for people with disabilities to be employed by the federal government.  One of the important principles included in the Rehab Act of 1973 was the idea of ‘least restrictive alternative’ or ‘least restrictive environment.’  What this means is that when services are needed – whether they are rehabilitative or educational – they should be provided in the least possible segregated setting, and that people with disabilities should only receive segregated services when absolutely necessary.  So, rehabilitation services should be provide in the community, not in segregated settings like hospitals or institutions.

PL 94-142 (1975), renamed IDEA (2004), and Every Student Succeeds Act (2015)

Public Law 94-142, the Education of All Handicapped Children Act – further modified in and renamed Individuals with Disabilities Education Act (IDEA) mandated a free and appropriate education to all children, whether or not they had a disability.  IDEA expanded on this idea, and recent reauthorizations have made some improvements.  Important to the original and subsequent modifications is the idea which was embedded in the Rehab Act of 1973 – the idea of ‘least restrictive setting.’  Extending this idea is the concept that the default educational setting should be one where the child with a disability is included or integrated, and only removed from an inclusive classroom for a specific, documented reason (therapy or another documented reason).  Also included is the mandate for a written individualized education plan (IEP) that describes the student’s needs and the services to be provided to assist in that child’s education, due process and appeals, formalized input from parents and the student, and periodic review.  Additional supports needed by the student are detailed in each student’s IEP.

The Developmental Disabilities Act (1963)

The Developmental Disabilities Act was initially authorized in 1963 by President Kennedy.  It is administered under the federal Administration for Community Living (ACL). It is reauthorized periodically and changes are made depending on current needs.  For example, in 1975, the State Protection and Advocacy systems were created to address civil rights violations.  The Act of 1978 provided for the creation of Developmental Disabilities Planning Councils in each state.  These Councils are awarded federal funds and are charged with funding pilot projects that can be widely adopted if they prove to be viable and useful.  The DD Act also provided for the creation of University Centers of Excellence in Developmental Disabilities (UCEDs) which are charged with training clinicians and other staff to work in the community with individuals with developmental disabilities.   Protection and Advocacy programs in each state can help with bringing legal actions in cases of violations of individual rights, but they frequently bring actions against more systemic violations of rights.   Protection and Advocacy Programs address legal rights of individuals with developmental disabilities, assistive technology, voting accessibility and traumatic brain injury. You can read more about the Developmental Disabilities Act here:

The Americans with Disabilities Act of 1990

The Americans with Disabilities Act of 1990 is the most sweeping legislation for persons with disabilities in the United States.  The ADA was signed by President George H. W. Bush in July of 1990, and took effect two years later.  The ADA and its amendments of 2008 provide for reasonable accommodation in employment, communication, transportation, and in the use of community resources, like local businesses.  While the ADA lays the groundwork for forcing accessibility, it also puts the burden of complaint upon disabled citizens.  While the Office of Civil Rights will investigate and prosecute violations of the ADA, reliance for identifying instances of violation rests with individuals with disabilities.

Picture of President Bush, three men and a woman outside signing legislation

Obama archives. President Bush signing the ADA. Far right (in hat) is Justin Dart.

The Olmstead v L.C. Decision of 1999

The Olmstead v L.C. Decision of 1999 was a lawsuit filed by two women living in the Georgia Regional Hospital.  Each of the women wanted to live in the community and in each case the professionals treating the women agreed that they would be able to do that.  The State of Georgia had not placed the women arguing that their budget was inadequate to support them in the community.  The case went all the way to the Supreme Court, which found that “under Title II of the ADA states are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate” and when other conditions have been met.  The decision also reaffirmed that individuals with disabilities should not be excluded from life in the community but instead should be included in society.   You can read the Supreme Court decision here: