Independent living by people with complex disabilities
Last Thursday I was asked to give a presentation in Amsterdam on independent living by people with complex disabilities, like myself. The audience were officials from Romania and from the World Bank. You can find my presentation below.
The officials from the world bank were so impressed that they are thinking to ask me more often on disability issues. I felt very respected by all the people present!
This is my presentation.
When I was 14 years old, I met Judith snow. She could speak, move her eyes and thumb and breathe. Nothing more. With her thumb she steered her electric wheelchair and with her breathing she controlled her speed. She became my heroin because she was a damned activist and strong philosopher and writer. Her friends had helped her to escape from the institution where she did not get dinner because she was at dinnertime still at university. Her friends also organized a personal budget for her with which she could employ personal assistants in order to live the life she wanted.
Judith showed me that life in an institution can be avoided. That gave me hope.
I am Thiandi Grooff, 33 years old. I get an allowance of the State to employ personal assistants in order to live independently.
Personal assistants are essential for me for control over my body. My mind is intelligent but I cannot control my body My Personal assistants must compensate for this lack of control. They must help me with my daily living functions but even more important, they must help me to fulfill my dreams, and I have many dreams. Some have been fulfilled already, like going to school, to university, succeeding in my master of international and European human rights. I am respected by the Council of Europe who gave me a good training and works with me in the disability area, but not by the Dutch Government.
A very complicating factor is my inability to speak. This makes it very difficult to express my wishes as I am only able to write when facilitated by a competent personal assistant. She/he compensates the lack of coordination and inhibition of my muscles. And sometimes I am too tired, anxious or suffering from frequent pains that even writing is impossible for me. Then my personal assistant must discover what I want or need.
Their third important job is to help me with my other dreams which are: Contributing to my community and to make friends.
Making friends is difficult when I am always with an assistant and I have many different assistances, who don’t always know my friends. Therefore, it is essential that they stay a long time with me, in order to get to know my friends and social structure and my dreams and how to deal with ignorant people, who prefer not to deal with me, like the schools in the Netherlands, but that is another important theme.
A big obstacle is, that I am very easily too anxious with new people because in the past I have been excluded so many times. My P.A. must understand this and he / she must be able to smoothen relations.
So, my assistant has a lot of roles. He or she must not only take care of my physical needs but also of my psychological and social needs.
My conclusion on the role of personal assistants is that they are very valuable and should be treated as very valuable persons to make society more inclusive and worth living in.