This is a good idea that I thought I should pass on about that letter about
getting better dental care. I received this from a special ed teacher I
know, and she has been on me before about sending letters like this into Ann
Landers, which is something we should actually begin to do with some of our
e-mails with strong points on disabilities and human rights issue behind
them. We might receive a great number of responses on whatever issue and
actually organize something ourselves using the responses we receive.
Remember this is how the ARCs got started, by a mother writing one letter
into a newspaper and receiving a great number of responses, so why can't we
do the same with writings and ideas from actual people with disabilities?
This could create jobs for us too with developing ideas and teaching people
about whatever.
Thanks,
Anthony
----- Original Message -----
From: William A. Wilson
To: [log in to unmask]
Sent: Saturday, March 31, 2001 10:02 PM
Subject: Re: An Open Letter on dental care
What an articulate letter, Anthony! I hope you and your friends are
successful at getting the word out to ALL dental schools! This might sound
stupid or silly, but did you ever think to write to Ann Landers? She's very
widely read... Eda W.
Anthony Arnold wrote:
Friends, I felt that some of you might love to see this letter, a friend
that has Cerebral Palsy wrote with help from her Personal Care Attendant
about the difficulties she has in trying to find a dentist whose willing to
work on her teeth. You might have the same problems with your own children
or yourself getting proper dental care, so please feel free to save this
and\or use some of the ideas given here. Thanks,Anthony 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.
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