Personal Assistance and Disability Pride

Adolf Ratzka reflects on disability pride through personal experiences, and the neccessity of personal assistance services to achieve independence and pride. Internet publication URL: www.independentliving.org/docs4/pride93.html

 

Presented at the Disability Pride Parade in Dublin November 1993

by Adolf Ratzka, Ph.D.

 


På svenska


Today we celebrate Disabilty Pride and Dignity. In order to be proud, though, many of us need personal assistance services.

I was forced to spend 5 years of my youth in an institution, because I happen to need personal assistance. A personal assistant is somebody who gets paid for helping me with the things I cannot do by myself like bathing, getting dressed, cooking or cleaning. At that time there existed no such services in the community. Those 5 years were the most miserable years in my life.

Today, Irish citizens are still spending their lives in institutions. Many Irish citizens cannot decide when they eat and when they go to bed.


It is hard to be proud, when somebody else decides when you go to the toilet.
It is hard to be proud, when you cannot come and go as you please.


Without personal assistance services people like me are forced into institutions. Without personal assistance services we become a burden on our families.


It is hard to to be proud when you are seven years old and still need to ask mom to pull up your pants. It is even harder when you are 40.


Years ago I was living together with a woman. She helped me get up in the morning, go to the toilet, get dressed. She did the shopping, cooking and cleaning. She worked 7 days a week, every week of the month, 12 months out of the year. I needed her for everything - she knew I was helpless without her. We were chained together. After 1 1/2 years she left.


On that day it was very difficult to be proud.


Today I live in Sweden, I am getting money from the state that covers the cost of 12 hours of personal assistance a day. With that money I can hire the people I want to work for me. I am the employer, I decide who will work, when they will work, what is to be done and how it is to be done. I decide when I get up in the morning and when I go to the toilet. My personal assistants help me at my work, they drive me to my meetings, they accompany me on my travels.

Today I am married. I am not dependent on my wife for personal assistance. I manage by myself - with the help of my assistants. My wife and I share the household work fifty-fifty. I do my share with the help of my assistants. She does the laundry, I do the cleaning. We share the cooking. I take great pride in the fact that my cooking is at least as good as hers.

We soon expect a child and my assistants will help me to take my part of the practical work that a baby entails.

Without personal assistance services I would have been hesitant to marry.
Without personal assistance services we would not have decided to have a child.


The day the baby arrives I will be very proud.


Thousands of Irish citizens are still dependent on their families or are living in institutions. For thousands of Irish citizens life is a spectator sport. To work, to travel, to fall in love and raise a family is something they watch other people do on television.

Thousands of Irish people could be proud and productive citizens, if they had personal assistance services.


Adolf Ratzka

English