Q and A: Mental Retardation
Question 1:
I view my eleven year old daughter (who has cerebral
palsy), as perfect just as she is and have no need to compare her development
against any external standard. Therefore, I am very uncomfortable when people
refer to her as "retarded" since it connotes that she is "less than" or delayed
in some way. However, I have encountered other parents of children with "special
needs" who have no problem with this word. How do you feel about this word? Am I
on target or do I need to "lighten up."
Response: Retarded doesn't mean stupid. It doesn't mean worthless. It doesn't mean
hopeless. And most of all, retarded doesn't mean unlovable. It also doesn't mean
that parents are responsible for causing it. But it can be a tough pill to
swallow when someone uses this word in describing your child.
Retarded does mean that a child is significantly below her age level in both
intellectual functioning (intelligence) and adaptive behavior. Adaptive behavior
includes communication, self-care, home living, social skills, community use,
self-direction, health & safety, functional academics, leisure, and work. Mental
retardation affects about 2 to 3 percent of the population.
Perhaps the term developmental disability easier to accept. This term indicates
any physical or mental condition (such as mental retardation, cerebral palsy,
epilepsy, autism, or a neurological disorder) that begins before the age of 18
years and causes the child to acquire skills at a slower rate than her peers, is
expected to continue indefinitely, and impairs the child's ability to function
normally in society.
Obviously you love your daughter passionately and no less than if she did not
have cerebral palsy. Your love is truly “on target.” On the other hand, if these
definitions accurately describe the reality of your daughters life, it wouldn't
hurt you to “lighten up.”
Unfortunately the “R” word has been used to insult and demean people. This
bigotry is a sad commentary on our society. I believe this has colored your
reaction as well as my own. My son who will be 20 next month has autism and
severe mental retardation.
I can remember as if it were yesterday the first time I heard the word used to
describe his development. I thought my head was going to explode. I wanted to
smash the face of the hospital social worker who said it. My throat tightened. I
argued that it couldn't be true and refused to accept it because it sounded like
a death sentence for my son as well as myself. I went home and cried for a long
time. My dreams for a typical child had been crushed.
Eventually, like most parents of children with special needs, I got over that
first devastating reaction. Now it doesn't bother me to hear the word retarded
used in its proper scientific sense. Perhaps someday we will have a society that
includes and values people with mental limitations as valuable and unique--like
your daughter and my son. I hope and work with others for that.
It's not so easy to lighten up. For me, it took time to heal the hurt of my
broken heart.
RN
