Marilyn Johnson

541 Days Road, Kingston, ON K7M3R8, CA

The Reclamation Project: The Value of Living Life at the Helm

Stories of life in an institution and the voices that closed them

Marilyn Johnson

My daughter Tammy was born with an intellectual disability that prevented her from having the ability to walk or talk. Tammy cried a lot as a child and the neighbours always complained. Everyone figured Tammy should be in school, but the public education system didn’t have a spot for her. We called upon Rideau Regional Centre (RRC) to investigate it, and we were called back to say they had a space for her. Our doctors told our family that Tammy would only live to the age of 5 and, at the age of 4, they urged us to move her into RRC. It was very hard to leave her there. I would go to visit her as often as possible, which wasn’t easy as we had no car.

I didn’t know a lot about Tammy’s life at RRC. Whenever I would see Tammy, she was clean and well dressed. RRC would inform us of her visits to the doctor, and any changes that occurred. We were never involved in her planning meetings, although our permission was sought for any changes. Tammy seemed happy at RRC and we were happy with her care. The institution was very clean. We were happy when Tammy began to speak at RRC, even though the first words she learned were “oh shit”!

At RRC Tammy was a strong self-advocate. She was once put outside in the winter without her coat on. She was angry about it and when she got back inside, she managed to pull the staff to the ground and wedged them under her wheelchair. She was very strong!

Tammy moved to Prince Edward Heights (PEH) at the age of 17. Our family was happy about this as she was closer to us and we could bring her home for weekends, or take her to her grandpa’s house.

Tammy went to school at PEH. We were involved in the planning meetings and we were always called for anything to do with the doctor. Tammy had a hysterectomy at PEH, but there were no health concerns that required this.

I don’t recall any programs that Tammy attended at PEH. We would visit Tammy on the ward, often taking other members of our family with us. Tammy loved her Grandfather and he would carry her around on his shoulders. Tammy had a great uncle who would visit her and take her out for drives in his sports car. We would often take her out to the park for a picnic.

Tammy now lives with Pathways to Independence. She shares her home in Belleville with 5 other people. It is much easier to get things done now than in the institution. Things that would take days then, are done quickly now. I am much happier where Tammy is now, especially since she is closer to our family.