Letter from the President
August 2004
One of my responsibilities as AAMR President is to call attention
to critical issues and challenges facing individuals with intellectual
and developmental disabilities, their families, and professionals
involved in the field. This is the first of a series of messages
in which I will offer some thoughts about where we are and
where we need to go. Perhaps it is appropriate that I use this
first message to introduce myself and in doing so, hopefully
also to reinforce a perspective on disability that may not
be widely known. In this letter I will reflect upon what I
have learned from having grown up with a developmental disability.
Sort of. I have been partially deaf since early childhood. This has not been
particularly burdensome and by some definitions would not qualify as a disability,
but it does provide a window through which I may be able to see better the perspective
of individuals with more challenging disabilities. My hearing loss was detected
through routine screening when I entered Kindergarten in 1952. It was presumably
due to an earlier childhood viral infection and has been fairly stable for over
50 years. I have a mild hearing loss in my right ear and a severe to profound
hearing loss in my left ear. It was significant enough in 1952 that the teachers
and staff advised my parents to remove me from the public school and place me
in a school for the deaf. This was 20 years before PL 94-142, so the public school
had no obligation to serve students with disabilities. My father (who was an
elementary school teacher in the same school district) refused and insisted that
I stay in my public school class. Perhaps he knew something they did not, or
perhaps he was 20 years ahead of his time. In any event, circumstances soon proved
him right. Even with my partial hearing loss, I was successful academically and
consistently placed at the top of the class. Before long the school forgot about
my hearing loss and (quite frankly) so did I.
A number of accommodations were made along the way. Since my name starts with
C, I was usually at the front of the classroom (where I could hear better). I
became an avid reader to supplement what I could only partially hear. And I learned
to read lips. This was never a conscious effort or something I was taught, but
rather a natural strategy to use all available clues in order to figure out what
people were saying. Even now, if I cannot see your face, I will have a hard time
understanding what you are saying. And don’t even bother trying to whisper
something into my left ear.
And so I proceeded through my career. Medical school was a challenge when I had
to learn to use a stethoscope. It was much easier to learn to use a reflex hammer!
I came to depend on reading textbooks rather than listening to lectures. I was
rejected for the U.S. Public Health Service as physically unfit because of the
hearing loss. But I became a rather successful pediatric neurologist and managed
to get by using the coping strategies I had developed over the years.
A few years ago I finally got a hearing aid, which helps a little. With it I
can hear some things I never heard before, things other people take for granted.
But quite honestly, sometimes it is easier not to use it and to rely instead
on all of the coping strategies that have gotten me through life so far.
What have I learned from these experiences that is relevant for us today? I may
be the first AAMR President in a while who has had a developmental disability,
even if it is a fairly mild one. The lesson I want to draw is that having this
mild developmental disability is just part of who I am and how I function in
my everyday life. And so it must be for others with more significant developmental
disabilities. It is not necessarily a burden and certainly not a form of suffering.
It simply describes one aspect of the way we function in society, a set of strategies
we use to respond to the challenges we face. It is part of who we are as individuals,
part of our sense of personal identity. To change it would be to change that
identity, and to accept it is to accept ourselves for who we are.
It is easy for professionals to look at someone with a developmental disability
objectively as a person who is fundamentally different and needs support or care.
It is harder to look at the person subjectively as someone who is fundamentally
similar as a human being and is facing certain challenges to get by in life.
It is easy for professionals---indeed, for anyone in society---to project their
own fears of having a disability onto people who have been living with a developmental
disability all of their life. People may say, "I could not stand it if I
were blind, or deaf, or paralyzed, or could not think well, or remember things,
I would rather be dead than have to live like that." And so they project
these fears onto people who do have to live like that and have been living like
that all of their lives.
When society projects its fears about disability onto people with disabilities,
the results can be quite dangerous and threaten the lives of people with disabilities.
If you have lived all of your life in a wheelchair, then being in a wheelchair
is not all that bad. If you have lived all of your life with a partial hearing
loss (as I have), then having trouble hearing things is not all that bad. If
you have lived all of your life with an intellectual disability, then having
trouble thinking well is not all that bad. What is important for people with
developmental disabilities---as it is for all of us---is to be happy, to accept
who you are and to be satisfied with your life. Life with a developmental disability
is definitely a life worth living, despite what some able-bodied people might
think.
As AAMR President, I would like to ask all of us to try to understand what it
is like to live with an intellectual or developmental disability from the perspective
of those who are living with these disabilities. Instead of projecting our fears,
we must learn to project our humanity. When we understand and value other people
as we understand and value ourselves, we want for them what we want for ourselves:
the opportunity to use our abilities, such as they are, to make our way in society.
As professionals, this subjective understanding of the individuals we serve will
help us do a better job. As citizens, the efforts that we undertake as a result
of this understanding will make this a better society.
David L. Coulter, M.D
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