What's in a name? A lot of things. Words have power. It only makes sense that names will have the same or equal power. The most power however is understanding them and being able to apply them properly during your day-to-day. Let's dive in.
"Retarded." "Slow." "Vegetable." "Dim-wit." "Idiot." "Moron."
These derogatory words and many others like them that many try to pass off simply as labels were often and still used to describe members that are part of the Intellectual Developmental Disability (IDD) and/or Developmental Disability (DD) communities. These words do nothing but tear down spirits, continue to let stigmas circulate, de-educate, and shut doors that could have shone some light on what it means to be affected by IDD and/or DD.
It should be understood that no person should be defined by external factors. One word cannot and will never sum up an entire person. To deduce and subject a person's complete personality, character, and state of being by hateful, disempowering words is a disservice to everyone involved - including the party using such speech.
Understanding Intellectual Disabilities
Before we can begin discussing the proper ways to address someone who may have IDD and/or DD, it makes sense to know just what exactly it means when someone is categorized as having IDD.
In the United States, developmental disability (DD) is defined by the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C. §§ 15002)[1] as:
A severe, chronic disability in an individual 5 years of age or older; with onset before 22 years of age; and that results in substantial functional limitations in three or more areas of life activity such as self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent learning, and economic self-sufficiency.
Intellectual Developmental Disability (IDD) is a subset of DD and is defined as:
A disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18.
Down syndrome is a chromosomal condition that occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome, including low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. All individuals with Down syndrome experience cognitive delays, but the IDD is usually mild to moderate.
IDD typically falls within the following four categories: nervous system, sensory system, metabolism, and/or degenerative disorders. These are grouped in terms of the body parts, systems they affect, and/or how they occur. For example:
Nervous system These disorders affect how the brain, spinal cord, and nervous system function, which can affect intelligence and learning. These conditions can also cause other problems such as behavioral disorders, speech or language difficulties, seizures, and trouble with movement. Cerebral palsy, Down syndrome, Fragile X syndrome, and autism spectrum disorders (ASDs) are examples of IDDs related to problems that lie within the nervous system scope.
Sensory system As the name suggests, disorders grouped into this category affect the senses (sight, hearing, touch, taste, and smell), how the brain processes, and/or interprets information from the senses. Preterm infants and infants exposed to infections, such as cytomegalovirus, may have problems with their eyesight and/or hearing. In addition, being touched or held can be difficult for people with ASDs.
Metabolism Where it relates to food, nutrients, and metabolic processes, these disorders affect how the body uses food and other materials for energy and growth. For example, how the body breaks down food during digestion is a metabolic process. Problems that can arise with individuals with a metabolism disorder will often present itself in gastrointestinal imbalances that cause food to not properly reach the different areas of the body they need to keep the body functioning well. Too much of one thing or too little of another can cause problems with overall body and brain function. Phenylketonuria (PKU) and congenital hypothyroidism are examples of metabolic conditions that can lead to IDDs.
Degenerative Individuals with degenerative disorders will experience a loss of skills, abilities, and functions over the course of time from birth due to the irreversible deterioration effects of the condition. This problem can go undetected for years until the child has reached adolescence or become an adult. Some degenerative disorders result from other conditions, such as untreated problems of metabolism.
Having a developmental disability or an intellectual developmental disability is not something that an individual can control. It simply does not make sense to constantly call him/her that one thing when he/she has a name and is much more than his/her disability. Let us focus on people-first language as opposed to identity-first language.
With identity-first language, the disability is mentioned first, but a person is a person before any potential identification factor(s) and even then, this person is still Sally or Bobby and never the cripple girl or handicapped boy. Restore dignity to differently-abled persons by providing a language that is not saturated with stereotypes and preconceived ideas about the individual who happens to be perceived as different and abnormal to society.
Patti McVay, the renowned educator and inclusion specialist, often provides this useful exercise:
Think of something that you don’t like about yourself that society has also deemed less desirable.
Now take that word and put it in front of your name and imagine being called that word plus your name all your life.
For me, the word “fat” comes to mind. The idea that I could be called “Fat Patti” all my life isn’t somewhere I’d like to go…
Below are some ways you can consider talking about people with disabilities to the extent you need to bring up the condition at all:
people with/who have Down syndrome, people who happen to have Down syndrome
children with/who have Down syndrome, children who happen to have Down syndrome
adults with/who have Down syndrome, adults who happen to have Down syndrome
individuals with/who have Down syndrome, individuals who happen to have Down syndrome
people/children/adults/individuals with Down syndrome and their families
Know the terms, the verbiage, and the stigma of the language revolving around the IDD and DD community. When you seek to understand why certain words were in circulation and how they can negatively affect said individuals, perhaps then you may think twice about using such words. Words have power. Let's practice using our words for good.
Sources:
“Intellectual and Developmental Disabilities (IDDs): Condition Information.” Eunice Kennedy Shriver National Institute of Child Health and Human Development, U.S. Department of Health and Human Services, www.nichd.nih.gov/health/topics/idds/conditioninfo/default.
“Words Can Hurt.” Global Down Syndrome Foundation, Global Down Syndrome Foundation, 13 Aug. 2020, www.globaldownsyndrome.org/about-down-syndrome/words-can-hurt/.