Whoever wrote this letter, actually did a wonderful job describing the
problem and explaining what needs to be done to correct it by visiting
dental schools and addressing the issue to upcoming dentists.  I myself,
also can't sit still for them to do any dental work on me.  I was blessed as
a child to be seen by a dentist who had hospital rights to work on me while
I was out, but he only sees children under age eighteen, so he won't see me
anymore and I'm having a difficult time finding another dentist who has
hospital rights and is willing to see me.  So experiencing this first hand,
visiting and speaking at the dental school isn't a bad idea, it might get
some of them thinking and caring for us.

Thanks,
Anthony

-----------------------------------
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  ----- Original Message -----
  From: Magenta Raine
  To: [log in to unmask]
  Sent: Saturday, March 24, 2001 1:12 AM
  Subject: My revised letter...


  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.