Sisters

Interview by Glen Hoos

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #17: The Siblings Issue). Click here to download the full magazine.

At a healthy and vibrant 77 years, Mary Ellen Somerville is thought to be one of the oldest living Canadians with Down syndrome. We recently sat down with Mary Ellen and her sister Barb to hear about Mary Ellen’s life and their special family bond.

Growing Up

Barb: Mary Ellen was born in Niagara Falls, Ontario on September 21, 1946. We grew up together with our sister Roseanne. Mary Ellen was the youngest.

When Mary Ellen was born, they called her Mongoloid. That was the official diagnosis. It was a different time. Later, when the terminology changed, they changed it to Down syndrome in all the doctors’ reports.

Our parents were very protective of her and very loving right from the get-go. Our mom was manic depressive, so she was in and out of a mental institution many times when we were children. And of course, it was suggested numerous times that Mary Ellen should be put into an institution. But that was an absolute non-starter. Our dad and our mother stood their ground and said, “She’s our child. She’s in our home, and we will take care of her.” 

As sisters, we were part of that; we protected her and watched out for her at school. She went to the same schools as us, in regular classrooms for elementary and in special education for high school. The teachers always loved her because she wasn’t disruptive. They never worried about exams; she just did what she could do. She absolutely loved school and was very well behaved. 

Mary Ellen: I remember going to school, but I didn’t particularly like it.

Barb: That statement could be because she was teased by other students. She hit a roadblock in the ninth grade. She repeated grade nine three times, then we received a letter from the board of education saying that you can only repeat a grade three times and then you’re out. They wouldn’t let her come to school the next year. 

She cried that whole year. By that time, I was working at the school as a secretary. Her teacher, Mrs. Arnold, absolutely loved her and she fought hard for them to let her come – but they wouldn’t allow it. I would be in the office and I’d see these rebel kids skipping school and causing problems being sent to the principal’s office. And I would think to myself, “All she wants to do is come to school and they won’t let her.”

Outside of school, there were no supports. No speech therapy, no occupational therapy, no respite. Just your family. Fortunately, our extended family – aunts, uncles, grandparents – were extremely supportive. Mary Ellen was always loved by all the family. We advocated for her and included her in everything, and it shows in the fulfilling life that she has led. 

Career Woman

Barb: Mary Ellen lived in Niagara Falls on her own for 31 years in a Kiwanis village apartment complex. There was an overseer and my sister and brother-in-law brought her meals and did her laundry. She was an immaculate house keeper, and was self-sufficient otherwise.

Once we realized that Mary Ellen couldn’t go to school, we knew she couldn’t sit at home all the time and we needed to find something for her to do. I started making connections with people that I knew, including someone at the local hospital. I contacted them and they said they would be glad to hire her for the cleaning staff. They called when Mary Ellen was home alone, and she answered the phone and they said, “Mary Ellen, we have a job for you. You can start work on Monday!” And she said, “Well, what am I going to be doing?” And they said, “Well, you know, you’re going to be cleaning under the beds, mopping, and things like that.” 

She said, “I do enough housework at home. I’m not doing that.” And she hung up the phone.

Our next attempt to find her employment went much better. 

Mary Ellen: I got a job with the park, at the restaurant.

Barb: She got a job with the Niagara Parks Commission. She worked there for 34 years, going every day and never missing a shift.

She started out as a bus girl. One day her supervisor said to her, “We’re going to close off the section by the windows that overlook the falls, and I want you to fill the salt and pepper shakers.” 

Now, when the supervisor tells Mary Ellen to do something, nobody else can come behind and change that. If you tell her to do something a certain way, that’s the way it’s going to get done. But a young couple came in,  jumped the rope, and sat at a table by the windows. And Mary Ellen became very upset. “You can’t sit there! Get out of here!” 

That’s when they moved her to the kitchen, which worked out really well. She worked a split shift, lunch and dinner, putting the silverware into the napkins.

Mary Ellen: I was a jack of all trades. I liked folding the napkins, clearing dishes, and talking to the customers.

Barb: The chef absolutely loved her. But in the summertime, they would bring in teenage kids as summer staff, and they loved to tease her because if they got her going, she would get angry and swear a blue streak. And so the chef would say, “You know, Mary Ellen, I think we’ve done enough work for today. Why don’t you just go home and relax?” 

The staff had lockers next door to a meeting room, and one day there were government dignitaries in there having an important meeting. She was getting her stuff to leave because the chef had sent her home; the kids had really got her goat and she was quite angry. She was slamming the locker door and swearing up a blue streak and of course, they could hear her in the meeting. So they called my sister Roseanne that weekend and said, “We think it’s time that Mary Ellen retired.” By that point she was in her fifties. They had a retirement party for her and gave her a service award, and she was excited. She had an incredible career. 

Staying Healthy

Barb: Throughout her life, Mary Ellen has always kept busy. She used to go to the community centre where she had an annual pass. She would take the bus that stopped right in front of her place and go swimming on her own. Travel has also been important in her life. 

Mary Ellen: I like to travel. I went to Disney World in Florida, and to the Rose Parade in California in 1983. I went to New York, and the place with gambling – Las Vegas. Also, Reno. I won 60 bucks!

Barb: That was her bus trip with our niece Julie. She was 18 at the time, and she took Mary for a whole month on a bus trip. They went down through California to Disneyland and the Tournament of Roses parade. Then went back up through Vegas.

Mary Ellen: My favourite was Hawaii. I saw the Arizona, the one that they bombed at Pearl Harbour.

Barb: She has been exceptionally healthy for most of her life. She gets good, solid sleeps, and she’s always enjoyed a variety of foods.

Mary Ellen: I like eating ice cream. And pizza. No salads. If I knew how I’ve stayed healthy, I would tell you. I go for walks over to the Chinese Garden. 

Barb: Mary Ellen has stayed very sharp into her late 70’s. I attribute this to the level of care she has received from her loved ones. Earlier in life, she had mastoid surgery in one ear, which caused total deafness in that ear. She’s lost hearing in the other ear over the years, but not completely. She also had hip surgery in 2006. It wasn’t due to a fall; the hip just wore out and she had it replaced.

She always loved swimming in the lake, so I took her to the beach yesterday. It’s tough now for her to walk on the sand because her stability isn’t there anymore. And now when she gets in the water, she’s more fearful of it than she ever was. She said to me afterwards, “I wish I was younger again and could do that. I guess I just can’t do it.” But she’s doing remarkably well. She says she’s never going to die – and to be honest with you, she might live well beyond me!

Heading West

Barb: Our sister Roseanne passed away in January 2023, and that’s what prompted Mary Ellen to move out here to BC. I had been paving the way for a couple of years because Roseanne had cancer. I would tell Mary Ellen, “You’re going to move out west with me one of these days, you know?” 

It hasn’t been an easy transition. I initially thought she would do okay in Niagara for a little while, giving me more time to set things up here in BC. But when she has grief like she does now, or like she did earlier when our father passed away, she gets angry. She misses that step of grieving and crying, and goes right to anger. Our cousin Gail and our brother-in-law Tom were bringing her meals and stopping in for a cup of tea once in a while, but it became too difficult to deal with. I had to fly in three times; finally I just said, “It’s time, we need to bring her out.” So, she moved out here in March. 

Mary Ellen: I wasn’t sure whether I’d wind up here. But I’m a Westerner now. My sister got me this place. It’s okay.

Barb: She lives in an assisted living home. It’s not a care home, but she may need that soon. I set her up in a beautiful little apartment. She has a nice little kitchenette; she gets her meals brought to her with meal assistance. The dining room was difficult because of her hearing. I come twice every day to bring her meals at 11:30 and 4:30. I make sure that her meat is cut up and her bib is on, and then she’s fine. She takes two hours to eat, but then she cleans up her own dishes and puts them on the tray for me to take down when I come back to the next meal. 

Mary Ellen: I like to watch videos, especially the old westerns, like West Wagon Train.

Barb: We used to watch them when we were kids, so she remembers them now. They’re familiar to her. Any of the newer shows confuse her. 

She could basically just sit in that room, I think, and watch TV for the rest of her life, but I’m trying to enlarge her world a little. I take her out to the beach and to picnics and for ice cream. I bring her downstairs so she can see people, and she’s very sociable. She goes up to them and says, “Hi, I’m Mary Ellen.” And she always says, “What’s your name?” If they don’t know that they have to talk directly in her ear, it becomes a hoot, because I’ll say into her ear, “That’s Margaret,” and she’ll say, “Oh, Marjorie.” And they say, “No, Margaret,” and around and around we go.

I also set up Zoom for her, so now she’s seeing more people – our nieces, my daughter and sons, great nieces, nephews, and cousins. She adores her family.

A Good Life

Barb: The world has changed now. Yesterday, we met a young couple at the beach. They asked how old she was, and I told them she’s going to be 77. And I said, she has Down syndrome. And they said, “Wonderful!” They were so attentive to her and helped me get her to a chair. 

When I told her about this interview, Mary Ellen didn’t know why you would want to talk to her. I said, “Well, you know, Mary Ellen, you have Down syndrome, and you’re one of the older people with Down syndrome in the entire country. You’re very special.”

She has been blessed to live such a long, good life. And that’s all our parents ever wanted for her. With their loving care, and then that of our sister Roseanne and brother-in-law Tom, she is now here and able to enjoy life with me and my husband Jack. 

When our dad passed away, my older sister Roseanne and I were on either side of the bed. His last words were, “Take care of Mary Ellen.” You asked Mary Ellen for advice for parents of children with Down syndrome, and she said, “Live a good life.” That’s what we have done. It’s good advice!