An Open Letter to the Dental profession

by Tamar Raine

I spent the last two years looking for a dentist I could work with. I have
some special needs because Cerebral Palsy and Dystonia affect my ability to
hold still, and Fibromyalgia makes the whole process very painful. I tried at
least six dentists in the East Bay. Finally, I called an old friend of the
family who taught dentistry at UCLA. He referred me to the dental schools at
several Universities. When I called the first place, the person we spoke to
had this reaction when told I had Cerebral Palsy; "Eww, what is THAT? What
kind of person has that?"  I looked at my assistant -- and she looked at me,
and we hung up. The school has a lot of educating to do.

So, we called the next school, and they were fine with everything. At the
first visit, they decided they needed to sedate me, so the Doctor wrote me a
prescription for Valium. It was not enough, and I told him so. I had taken
Valium most of my life up until 4 years ago. But he persisted. So I went back
a couple of weeks later, and they tried to work on me again. But my gums were
so sensitive that they decided they were going to have to do a full
anesthesia which required I be admitted to a hospital. It looked like I was
going to lose three or four front teeth.

We scheduled an appointment for February, then they called saying they had to
reschedule, so I didn't go in until March first. When I woke up from the
surgery, I was told that five teeth had been removed. Okay, I thought, that's
too bad, but hopefully this will allow my mouth to heal.

In the meantime I got all kinds of advice from one of my personal care
assistants who is going through a similar problem with her teeth. Her dentist
talked to her, while mine said absolutely nothing about changing the way I
clean my teeth, how I eat, etc. This entire thing has been like a wake-up
call to me, and now I'm passing on what I've learned to others. I have
changed a lot over the last three months, but my dentist wouldn't know about
that, as he never bothered to check in with me about how I might improve and
keep my gums and teeth healthy. It seems as though he just expects me to go
on as before, that I can't learn from my mistakes. But I can, and I have.
Most of us can when given the right information.

I assumed that when I had healed from the surgery the dentist would talk to
me about dentures. Well, I finally went in for a post op visit, and I asked
the dental student about a bridge, and the response I got shocked and
astonished me.

He said, "Well, I don't think the doctor had planned for a bridge."
I asked why not, and he sighed and said, "Well, I think it has to do with how
tight your muscles are, it would make the bridge pop out all the time."

I said, "Well honey, I am not going without teeth, no-no-no-no-no. What about
implants?"

He said something to the effect that I still had a large chewing area, and
that implants would require they knock me out several more times, and they
didn't want to do that because of the risks involved. By this time I was very
angry, and I told him that I was not accepting a life without teeth, and that
it is my right to try for some sort of dentures, and please have the Dr. call
me.  I never heard back from the dentist or his student. But I am not going
away; I will not be put off.  I will have teeth. I will not have The Look
that conquers up so much negative stereotyping.

It's simply outrageous that dentists don't want to fit disabled people with
dentures. They seem to think it's all right for those of us with Cerebral
Palsy, Autism, and other developmental disabilities to go around with gaps in
our mouths. It might have been an acceptable appearance forty years ago, but
it is no longer acceptable to be stigmatized in this way. Whenever you look
at a large group of people with developmental disabilities, there are always
a high percentage of people with teeth missing, and crooked remaining teeth.
The look has become part of the stereotype people have of us. We have enough
prejudice against us, we don't need the added stigma of gaping mouths.

Maybe you don't know this, but we do have a social life, and we do have
interests in dating and getting married. We exist in the community now,
instead of being hidden away in back rooms or in closets. I know you'd Never
Dare tell somebody like my sister or my helpers to go without teeth, so why
is it acceptable for me to go without teeth? Also, if I were working, I
wouldn't go without teeth. As it is, I AM looking for a job, all I need is
more strikes against me because I don't have a professional appearance.

It might be true that a bridge would pop out on occasion, but it is not your
decision to make. It's my mouth, my life, and I am the one to decide what's
going to happen to my mouth. If a bridge doesn't work, then try implants, for
Pete's sake! If I need to be put under anesthesia for this, then that's my
decision to make, not yours. I'm aware of the risks.

When will people realize that people with disabilities need to look as good
as their "typical able bodied" neighbors? When will you realize that you
should let the client make decisions for themselves, and discuss these things
honestly with us? When will you learn that people are individuals, and need
to be regarded as such? Why didn't you discuss my options with me before the
surgery?

The more I think about The Look, the angrier I become. I have already worked
over half my life at improving my self esteem, the last thing that I need is
The Look. Dentists have a responsibility to make people look BETTER, not
worse. We don't need to perpetuate this stigma. And don't tell me that I
don't need teeth! I've seen what happens over time with the remaining teeth.
They get crooked and the bite changes for the worse, and the lips loose their
muscle tone.  Really, you should do for us, what you'd do for your own
family. I think the dental profession had better update its practices, and do
some soul searching.

A friend of mine has offered to do a disability awareness lecture at another
dental school, and they have gratefully accepted her offer. I would be open
to doing the same. Properly educating the dentists of tomorrow will go a long
way to repair some of the damage done in the past. And hopefully, by more of
us speaking on the needs of people with disabilities we can save more folks
from needing to have teeth removed.