Hello,

I've been wanting to ask this for a while.

I subscribe to a mix of the social model and the medical model.  That 
is, while disability itself caused me a lot of problems, living with it 
in this US culture (that is not intended to be a political statement) - 
that caused me as many problems, if not more.

my biggest frustrations:

1.  money.  I am better off than a lot of people b/c I have a 
supportive husband and managed to hold onto a part-time job.  My 
biggest CP issues are actually ataxia-related, including sensory and 
mood disturbances.  That was also related to a trauma history that I 
have dealt with to a large degree :)

basically, I could handle physical impairment and then severe mental 
illness set in after 9/11, and I had a very difficult time handling 
BOTH the CP stuff and the mood disorder stuff.

the need to self-pay for a lot of treatment and assistive devices, both 
physical and mental, made this worse.


2.  the assumption that if one cannot maintain consistent performance, 
you are a slacker and should be kicked out of 'normal' society.

Pain and weakness made it difficult for me to perform every day. This 
is something I am still working on.


3.  side effects of medications for physical conditions and mental 
illness.  This resulted in one hospitalization.


now, rewards:

1.  I have gotten very realistic about what I like and don't like, and 
what I can do and not do.  Of course like everyone else, I spend a lot 
of time doing things I don't like or love :), but I don't get into a 
status 'game' just because.

2.  the loss of fear of old age.  so I will have diminishing capacity.  
I mean I have learned to plan for this.

I hear a LOT of people complain about old age.  I have to bite my 
tongue, assuming they are not disabled, b/c I want to say

'this means you will be more like me.'

'I have advice I can give you that I've worked out from decades of 
experience.'

'you know you might want to try.'


I have learned most people are not willing to accept these suggestions.


I understand a lot of people with CP get hit with aging issues earlier. 
  I have noticed this as well.  That's not the type of thing I mean, 
where people are in pain, etc. and dealing with it.

I'm talking more about the FEAR of old age by people who just really 
don't want to accept that they are going to slow down, that this is 
human nature.


3.  acceptance from some very famous people.

I am nobody special but I had some support from a few famous scientists 
and other people, back in the day.  Like Carl Sagan.  I was interested 
in science as a teenager (I have a degree in physics) and was pushed to 
talk to Sagan really against my FIRM conviction that he would NEVER 
talk to someone like me.

and I found out from talking to him and a few other people, that many 
very famous people, not all of them but a lot of them, in many 
different fields, they are motivated to work hard and become famous b/c 
they have relatives/other loved ones with disability and they see, 
early, the effects of health care and other neglect.

he did not say if that was true for him or not.  he said though that 
famous people tend to talk to each other, b/c it's an unusual 
experience being famous and they are often curious about what motivated 
other people to do that kind of work.  this is assuming people achieve 
fame based on "real" accomplishments and not just recording a song or 
two, or doing something else where they really are not putting in 
effort.

and he said that meant that the indifference that many people show to 
the problems of the disabled (as he put it) is very often not shared by 
the highest experts or the most famous people in any field.  Now anyone 
can be a jerk but the 'success rate' with an expert is likely to be 
higher than with a successful professional who is as invested.

two examples are:

E. Fuller Torrey, who has been called the most influential psychiatrist 
in America.  his sister developed schizophrenia at a young age.

and

forget their names but.  the founders of United Cerebral Palsy, whose 
daughter had/has CP.  IIRC, the father and maybe both parents were very 
well known in the movie industry.


Carl Sagan told me that many famous people feel a connection to people 
with disabilities for that reason and they view it as a PERSONAL 
victory when someone who is disabled manages to accomplish things that 
are meaningful *to us*.  not things that the culture values 
necessarily, like walking or tying our shoes :), but what we want and 
what we value.  Like getting a good education.

he also told me that the 'inspirational' 'you have to save the world or 
touch a lot of people to make up for being disabled' view, that a lot 
of 'regular' people hold, is not something that accomplished people 
tend to support.  they see the lack of logic in asking people to 'make 
up for' something.


I talked to Carl Sagan a few times when I was a teenager which was over 
20 years ago.  He talked to a lot of people who were not traditional 
scientists or science students.  He provided a lot of motivation for me 
to get a degree in physics.

and I have to say there is a certain "physics prestige" where people 
(incorrectly) assume I'm smart b/c I studied physics :) - that has 
helped me stay employed.


thanks


Mary Katherine

-----------------------

To change your mail settings or leave the C-PALSY list, go here:

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy