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St. John's University Cerebral Palsy List
Date:
Sun, 25 Mar 2001 19:10:28 -0800
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Ok- this is a side note- offshoot of dentistry-

I get my nails done at times and I was having a set put on.  I went to a lady that a friend of mine goes to- OMG  She was the worst!!  First of all she yELLED at me that if I didn't keep still, she'd end up  burning/cutting me (Using those dangerous tools they use) - that was pleasant!  I  explained to her that I could NOT help it.,.....  Then she was talking Vietnamese to her other staff- and I KNOW - no not paraoid here-  ya just know this stuff- she was bitchin about  me.  Needless to say I didn't go back.  A staff person where I worked at the time called the shop and told off the manager- like that made a  difference!  People are so impatient.




On Sun, 25 March 2001, Carla MacInnis wrote:

>
> Hi Kathy,
>
>   The gag-choke reflex that many with cp have is a major obstacle to level of
> comfort when having dental work done. Many of us take oral sedation, or some
> will have full anaesthesia to have teeth cleaned, filled, or extracted (yuck)
>
>   Many dentists and hygienists routinely recommend the use of electric
> toothbrushes, which essentially do the work for us, with regard to effective
> cleaning and plaque reduction. Manual brushes are very often difficult for those
> with grip problems to use well.
>
>   Improved attitude of dental professionals will do much to ensure that
> experience with them will be as stress-free as possible. When choosing a
> dentist, interview him/her before any work is done so that you can outline very
> clearly what your issues/concerns are at the outset. Educate them about cerebral
> palsy and how the various quirks related to it affect you in relation to your
> experience with dentists.
>
>   If you haven't already, Kathy, you might enjoy reading "Dental Phobia" the
> link on my web site. Mag's Open Letter to Dental Professionals is there as well
> :) - http://www.brunnet.net/terrier/tooth.htm
>
> Cheers!
>
> Carla
> http://www.brunnet.net/terrier
>
> kjpink wrote:
>
> > 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.
> > >
> > >



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