The Definition of Mental Retardation
People with mental retardation are like people without mental retardation, experiencing the same needs, desires, and dreams. According to the 1992 revised definition developed by the American Association on Mental Retardation, three characteristics must be present to meet the definition of mental retardation:
1. Significantly subaverage general intellectual functioning – an IQ score of approximately 70 to 75 or below based on individually administered intelligence tests.
2. Significant limitations in adaptive skills in two or more of the following areas: communication, self-care, home living, social skills, community use, selfdirection, health and safety, functional academics, leisure and work.
3. Appears before age 18.
Historically, levels of mental retardation have been defined based on IQ score: mild mental retardation = IQ of 51-70; moderate mental retardation = IQ of 36-50; severe mental retardation = IQ of 21-35; profound mental retardation = IQ of 20 or less. Because these levels have been used for many years, you will likely see them in the records of people you support. Because they represent only ranges of IQ scores and tell little about the many different kinds of abilities and interests of individuals, these levels provide little useful information in supporting persons with mental retardation. The 1992 AAMR definition of mental retardation does away with the idea of levels based mainly on IQ and test scores and looks instead at the types and levels of support the individual needs. The definition emphasizes how a person gets along in the world, recognizing that mental retardation is not a disease or mental illness. Rather, it is a condition which means that the individual needs help (supports) to be successful in the important areas of life, such as living away from one’s family, getting around in the community, working, and going to school. The AAMR definition recognizes that, a person’s functioning (ability to do things) may improve over time or with supports from others.
Mental retardation is a severe and long-term disability, meaning it results in significant impairments and continues throughout the person’s life. Individuals with mental retardation may require lifelong services and supports to live successfully in the community. However, the types and levels of supports required are usually very different from person to person and may even change over time for a single individual.
Causes of Mental Retardation
There are about 250 known causes of mental retardation. Many of the causes are genetic (from the genes of the parents), as in the case of Down Syndrome or Fragile X. Some are environmental causes, as in the case of brain injury resulting from accident or physical abuse or a severe illness, such as spinal meningitis. Mental retardation may also result from long-term social deprivation or poor nutrition.
Myths and Misconceptions
1. All people with mental retardation are alike. Through the years, people with mental retardation have been placed in group settings partly because people think that it’s cheaper and easier, and partly because people don’t fully understand the disability. The individuals in a given group may have nothing in common other than mental retardation. Their personalities, likes and dislikes, needs and goals vary as much as any other group of people who might be chosen at random. Having mental retardation may mean needing supports to reach a goal that a person without mental retardation might reach by himself. However, the presence of mental retardation does not change the fact that the individual has his own (self-determined) goals. Each person with mental retardation may require some supports, just as we all do in different areas of our life. However, the levels and types of supports appropriate for one person may not be right for another person.
2. People with mental retardation are ill. Mental retardation is not an illness. You can’t catch it. It’s not something to be cured. An individual with mental retardation may or may not also have a medical condition, physical disability, or mental illness, just as anyone else.
3. People with mental retardation need specialized services to meet all their needs. A person with mental retardation can buy groceries at the same store as a person without mental retardation. The person with mental retardation may or may not need some help with the shopping. A person with mental retardation, who has a medical condition, can be treated by the same doctor as a person without mental retardation who has the same condition. The person with mental retardation may need some help telling the doctor how she feels, understanding the diagnosis, or taking prescribed medication.
Your Role — What Can You Do?
1. Be a “roadblock remover” — refuse to look at the label before the person. Get to know each person you support as an individual. Be a friend.
2. If an individual tells you — by words or behavior — that she wants to do something, focus your energy on how the person could achieve that goal. A person with mental retardation may need a different route to achieve a goal than someone without the disability. Be creative and help find the route.
3. If you hear someone say something like, “John says he wants to drive a car but he could never do that because he is retarded,” start talking about possible ways John could come as close as possible to that goal. If John has never had the chance to see what driving might feel like, suggest that the person (or you) go with John to the mall to drive in a driving simulator at the arcade. Take each person’s goals seriously.
4. Try to figure out what a person really wants when he tells you about a goal. If John is saying he wants to drive a car, explore what the idea of driving may mean to John — freedom, independence, being on one’s own, being an adult. Maybe you can think of other things he can do that would also make him feel that way, such as taking a walk in his neighborhood by himself or going to a movie with a friend but no staff.
5. If you find yourself thinking “people with mental retardation can’t” thoughts, share these with your co-workers and ask for their suggestions for breaking out of that mind set.
6. Ignore a person’s history. A person’s history may provide valuable information but should never be used to limit opportunities. The field of mental retardation services is full of stories of people with a “bad history” who have achieved great successes because the people supporting them didn’t pigeonhole them based on their history. Wouldn’t that be something if you are able to help someone you support to achieve greatness?
7. Model for others. If you treat individuals you support as equals, people in the community will be less likely to treat them as inferiors. When you are in a store with an individual, try to make your support as invisible as possible. Ideally, anyone looking at you will have no reason to see anything other than two friends out shopping together.