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As a person with a disability, how have you demonstrated the power of self advocacy?
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Name: Aul Pedajas
Email: aul@bigfoot.com
Date: 07 Oct 1999
Time: 07:29:32
Remote Name: pm1-56.1v5.infi.net
Hello,
My name is Aul Pedajas. I was born with a muscular disorder called Spinal Muscular Atrophy Type II in Põltsamaa, Estonia on June 14th 1963. Because of my disability I am not able to walk or even use my arms and I use a voice activated computer for typing. Nevertheless I was able to finish high school and graduate from university. All my teachers visited me at home and this way I got a bachelor's degree in applied mathematics in 1987. I also know pretty much about computers and I can speak four languages (Estonian, English, Finnish and Russian). In addition I can read a little German and Swedish. I have represented my home country at conferences for disabled people in Germany, the United Kingdom and the Netherlands. In Estonia I have worked as a translator, tutor and software tester. My last position there was as an engineer at the Institute of Cybernetics. I also tried to get a master's degree, but in Estonia they were not able to find a suitable subject for my thesis and I did not get money for going to study in Denmark where I was invited by a well-known professor Brian Mayoh.
My mother died in October 1991 and my father was killed in a car accident in April 1992. Until then, my main carer had been my grandmother who was by then almost 82 years old. My only brother who is 3 years older than me (I have no sisters) was not able to take care of me either and I decided to move out from our parents house and started living on my own after finding an attendant through an ad in a newspaper. There are no personal care services in Estonia and I did my best to avoid going into a nursing home. Nursing homes in Estonia hire former criminals and they are full of violence. That really was not a place where I wanted to be.
Unfortunately it was very hard to keep attendants I hired, because I could not pay them enough. My last attendant in Estonia was a teenager who needed a place to live, so I let him move into my apartment. As he had to go to school I was alone almost all day. Sometimes I had to be alone without food, water or a chance to use a urinal for 8-9 hours. We also had a hard time when I had to take a bath. My apartment was pretty cold in winter (Estonian winters are humid and the temperature can drop to -15° F pretty often) and there is no warm running water in summer. I weigh only ca 60 lbs. and I get cold easily which is very dangerous for me because of my weak lungs. Another problem was that my apartment was on the 7th floor and the elevator was not big enough for my manual wheelchair. I was lucky if I got out of my apartment even twice a year. It was only possible when somebody took me for a ride in a car, because Estonia is very inaccessible for wheelchairs and wheelchair users cannot use public transportation either. The special transportation for disabled people is almost non-existent. That's why I can say that Estonia was like a prison for me.
My grandmother died in May 1996. In October the same year I got a chance to see a doctor in Salt Lake City. I flew there with my young assistant. After being in hospital for a while we visited some people I know there through e-mail and LDS Church to which I have belonged since November 1992. In January 1997 we flew to Colorado to visit other people I knew. My visa was valid until April 1997, but I had made new friends and I wanted to spend some more time in the USA. We extended our visas for 6 more months and it happened that I got married in July 1997. I was really happy about that. I had achieved more than I had ever expected.
Unfortunately my life changed soon. On January 22, 1998, only one day after I got my employment authorization, a very serious pneumonia hit me. I was very close to death, but I survived. The same year 2 disabled people I knew in Estonia died because of pneumonia though they were physically stronger than me. I was glad I was here and I got the best possible care. Moreover, Estonia was announced by the World Health Organization (WHO) as one of so-called "red zones" of tuberculosis in 1997. It would be really dangerous for me to be there now. I came home from the hospital in March 1998. Now I have a trach which I do not need, but doctors recommended that I keep it in case of another emergency. I also use a kind of a ventilator (BiPAP) at night that gives some rest to my lungs and helps me breathe deeper. However, my health is back to normal and I am looking for a job again. Unfortunately my wife filed for divorce in January 1999. It was a real shock for me, because I lost my love and soon I will have an interview at the Immigration & Naturalization Service (INS) which because of the divorce may mean that I have to go back to my home country where I do not have even a place to live anymore except a nursing home. I pray often that this will not happen, but the only way to stay in the country is to get a job that requires my degree and because I have been looking for a job for two years without a success, it is not very likely.
This is the situation I am in right now. Thank you for reading about it and if you feel you can help me somehow or you want to contact me for any other reason, please do so. I would really appreciate that.
Sincerely,
Aul
http://apedajas.spedia.net
Copyright © 1999 Aul Pedajas. All rights reserved.
Name: debbie howk
Email: howkdebora@yahoo.com
Date: 21 Feb 2008
Time: 11:01:35
Remote Name: 76.212.227.175
I worked as a server and was told I was to slow and if I did not pick up I would be let go by Sat. Well Sat came and I was not let go. Three weeks after that I was fired because I was too slow. I did not even know he was letting me go. Now I do not even feel that if I get another job if I can even do it. This has hurt me more than money wise. I feel worthless and do not know what to do now.
Name: oleg
Email: sigma@gagmail.com
Date: 02 Apr 2008
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