541 Days Road, Kingston, ON K7M3R8, CA
Madonna and Connie Strange
Editor's note:
After a very short but difficult illness, Madonna sadly passed away a few months after this interview, on September 7, 2018 at 63 years of age.
Their Story
Madonna and Connie are sisters but, for years, they didn't know about each other. Their staff Debbie, who worked with Madonna at Southwestern Regional Centre (SRC), and then with Connie at Community Living Windsor (CLW), realized they were sisters. She introduced them and the rest is history. As Connie and Madonna are both non-verbal, Debbie tells their story. It is presented in 3rd person narrative.
Madonna was born in 1945. She started out living at Huronia Regional Centre in Orillia from the age of 5. She then moved to Southwestern Regional Centre in 1965. Debbie worked at SRC and met Madonna when she was 21.
In Madonna’s early life there were no wheelchairs at SRC. She was carried from her bed to a day bed that she shared with 5 or 6 other people. All personal care was performed on the day bed, right in front of everyone else. There were only 3 staff to every 40-45 people so personal care resembled an assembly line. There would have been no time for any staff interaction or interference in conflicts. All services were provided at SRC, so there was no opportunity to access anything in the community.
For meals, there was a community chair that people took turns in, like a hammock on wheels. Baths were performed on ceramic slabs, years later being replaced by metal tubs. Madonna would have worn cloth diapers.
Madonna would meet other people at dances, or would meet others when they delivered mail or made beds but there was no other socialization outside of the people on her ward. There was absolutely no ability to express her own sexuality or to have a relationship with someone.
At SRC there were recreational activities in the basement. Sometimes they would have lunch in the basement for a change. Each ward had its own fenced in courtyard and they would sometimes go for a walk. If someone was labeled a wanderer, they would be tied to a chair outside to prevent them from walking away. There was also a morgue in the basement and most people who died while at SRC were buried in Chatham.
Christmas at SRC was celebrated during the first week of December so as not to interfere with staff Christmas celebrations. SRC didn’t celebrate any birthdays or other holidays except for Halloween. The wards had costume contests. Eventually they had cakes for birthdays but nothing else.
Madonna was generally happy at SRC. She had pneumonia a lot and had to use a standing box where they would tip her over to drain her lungs. When Madonna was at SRC she had a hysterectomy without her consent, as many did in that day.
Madonna didn’t have many possessions at SRC and would never buy any of her own items. After they met, Connie would visit her wearing her own accessories. Because Madonna loved them, Connie would give her some, but they would always get lost. When Madonna showed up to CLW, she only brought a few Disney movies but everything else had to purchased for her when she arrived.
In SRC the abuses and neglect were bad. Madonna received a large pay out from the class action lawsuit brought against the Province of Ontario by former people who lived at SRC. Debbie says her file was very disturbing.
After Debbie introduced Connie and Madonna, they started communicating. Connie would go to SRC and visit Madonna during Family Day. They started doing overnight visits and took a vacation together to Niagara Falls.
Connie lived in an apartment and Madonna would visit her every couple of months. When Connie was young, she lived at home and went to school. Connie lived in the first wheelchair accessible home in Windsor. They had 2 brothers, one who also had an intellectual disability and lived at SRC, passing away in the late 1970’s, and another brother who lives in London. Connie is 12 years younger than Madonna. Their Mom decided that she could not give yet another child up to the institutions so kept Connie at home. The parents rarely visited the institution. Dad was old school and felt Madonna got better care there. Madonna wanted out earlier but their father refused to give consent for her to leave SRC. He thought Madonna would die if she left SRC. Their mother had passed away years ago. When it finally came time for Madonna to actually leave SRC, the father could not be located and never did give consent.
Besides their father, one of the biggest challenges to move Madonna was in finding a doctor. It took a lot of planning to access more complex care. Dad wouldn’t believe that care was available. SRC was willing to help and did training for staff at CLW for Madonna.
Changes were evident in Madonna after she moved. She got a voice. She was more aware and able to communicate. At SRC all she had was a bliss board. She watched Connie with how she said her yes’s and no’s. Staff talked directly to Madonna and learned her answers. Now Madonna picks her own clothes, shops, directs most aspects of her life. In the beginning, she would take a long time to shop for clothes as she wasn’t used to making choices. This became much faster. At SRC Madonna slept in a crib cot and was glad to get a bed after she moved.
Before their current house, they lived in a 4 bedroom apartment (converted 2 into 1). They had no balcony, in not a nice area, and were not always able to go out. There were nice folks in the building that would look out for them. The CLW Executive Director, Malcolm, was invited for lunch. They set up the apartment to look like they had a patio, complete with umbrella’s and cardboard people. They were hoping to have a balcony built. Malcolm surprised them and offered them a new house. During the building of their home, they would go for visits, even tenting and picnicking in the yard. Now their house is very much like a home and a family. It is the only house in the agency where staff are allowed to paint rooms!
Madonna and Connie love to travel. Madonna had been gone from SRC for only 3 weeks when they went to Picton to stay in a cottage. They went to the drive-in and found out she has an allergy to mosquito bites. They went to Disneyworld and got a personal and private meet and greet with the characters. They took a train to Chicago to go shopping. And they did a house swap with a Community Living home in Goderich. There they went fishing twice and had a ride in a convertible.
They usually get meals bought for them and they are always treated special because they always touch the hearts of everyone. A local restaurant put on a free Thanksgiving dinner for everyone in their home.
Both Connie and Madonna have an active social life. They belong to a Birthday Club with many other friends (about 12-15 people). They all pitch in $5 and pick events, like karaoke, to celebrate monthly birthdays. They have an organized social group where they have monthly themed parties. They hosted a cultural dinner where people could cook ethnic dishes and play music etc. Connie and Madonna host awesome Christmas parties to which people vie for invitations. They also do pet therapy, and have spa days.
Madonna has a friend from her SRC days, Susie, who she tries to contact monthly. Madonna also has a couple of male friends that she dates. Connie has a boyfriend who she goes out with. They have been to the theatre and went away on an overnight trip as well.
Madonna has survived some very significant challenges in life and is very happy. Her health has improved a lot. She used to be on many medications. She had high blood pressure and was frail. Her stagnant life caused many health issues, like pneumonia. Now her health issues are age related. Both she and Connie got G-tubes this year.
When Debbie first came to CLW from SRC she says she was an institutionalized staff. It felt weird for her to be able to support choices in the community. Now Debbie and Connie do a presentation at orientation called “Make a House a Home”.
Madonna moved to her home in Windsor from SRC 13 years ago. Even though Madonna was always happy at SRC, happiness looks much different, and has a much deeper meaning, at her home now.