Anthony,

Is this a common problem for people who have Cerebral Palsy? ,Kathy





----- Original Message -----
From: "Anthony Arnold" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, March 24, 2001 8:38 PM
Subject: Re: My revised letter...


> 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
>
> -----------------------------------
> Join my AAC listserv today at http://groups.yahoo.com/group/arnoldaac
>
>
>   ----- 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.
>
>