VOICES OF OUR REGION
Nancy Murray
Transcript
I am Nancy Murray and we live in Bethel Park, my husband and myself and the only one of our children still living at home is Marissa. And we’ve also raised two boys and they are both living in supported apartment programs through Citizen Care and they live in Greentree. And we see them most weekends. And as I said, Marissa still lives at home with us and she’s on the waiting list, because she would like to move into an apartment with…with her friends. If the money came through about 3:00 this afternoon the bags would all be packed by dinner.
Marissa is not my birth child. My husband and I were house parents for these three children and Marissa came to live with us. They all came to live with us back in 1977. Marissa came first and she was three at the time. And then Mickey and Jimmy followed by Christmas of that year, so we had three children in seven months.
Interviewers: Tell us what a house parent was in those days?
Nancy: Well back in those days there weren’t many in the state but house parents were married couples who did not adopt but who basically acted like host home. Today we now call it family living or life sharing. That’s exactly what it is but back in those days families, such as my husband or myself, you know, agreed to care for and basically be parents. Because for these three children their parents, for one reason or another were not able to have them live with them and care for them.
And we did everything that any other family would have done, although we had…we just happened to have three kids with Down’s Syndrome. Two out of the three went to early intervention in Allegheny County. Michael went to early intervention up in Erie County. But they all took advantage or early intervention. They were probably some of the early kids to go through early intervention.
And from there they all went to Pathfinder school. Because in those days the idea of kids with disabilities going to typical schools was not that common. And back in those days it was more the norm that kids with all types of disabilities, physical disabilities, cognitive disabilities, all went to what we called back then special schools. And back in the ‘70s there were actually, what, seven special schools just in Allegheny County each of these schools had hundreds of children just like typical kind of elementary school today. And kids went there from say kindergarten up until they graduated. Michael and Jimmy both graduated from Pathfinder. Marissa actually spent her last four years at Mt. Lebanon High School. If she was sitting here with me today, she would say those were the best four years of her life. She had a blast.
She made friends there. She started out in the resource room and then each year she spent considerably less time each year in the resource room. We happened to know the girl’s volley ball coach we asked her if maybe Marissa could, help out with the girl’s volley ball team in some way. And as it turned out she became the manager for the girl’s volley ball team for four years. She traveled with the team. And that was her entrée into knowing some of the most popular kids in the school, And they were not her best friends. Our expectation was not that they would call Marissa on Friday night and say, ‘Hey, you want to go out?’
The expectation and the hope was that, during school, in the cafeteria or just passing in the hallway there would be other kids that she would know. And they would introduce Marissa to other kids.
Right now she’s a bagger for Giant Eagle. She had a couple of jobs. After graduation she worked in child care for about two years. But she was around sick kids all the time.And really compromised her health. So after a while we thought this really is not the best job for her. She worked at Bed, Bath and Beyond for about five years and she liked that. And one day she decided she wanted to work in Giant Eagle because she happened to know some people who worked there. And a couple of weeks ago she actually competed in the Best Bagger Contest. Took honorable mention.
Again, she and her friend, Jerry, who is also a bagger were they only two people with disabilities there. And it was total inclusion. That’s what inclusion…is all about. So that night Jerry’s mom and dad and my husband and I stood there for four hours thinking to ourselves, ‘What are we doing here? Oh, that’s right. This is inclusion. This is what we’ve been working for all these years.’
Interviewers: Now what about the boys? What are they doing?
Michael works for Citizen Care on a mobile work crew. They’re the cleaning crew for Embassy Suites. He was competitively employed years ago. He worked at Burger King. And he was there for probably five years. But soon we realized that there was really no social life there for him. So the opportunity came to move him,
And Jimmy works at Canvin High School on one of Achiva’s cleaning crews. And he’s been there for…I’ve lost track…probably 10 years. He likes it. He’s on a crew so he’s with people. And for a lot of folks with disabilities when they’re competitively employed that’s…that’s fine, they’re competitively employed but they’re missing out on the social stuff. And that’s part of somebody’s success on the job, too.
I think on whole Giant Eagle is known as an employer who really supports people with disabilities.
Interviewers: But I will tell you and a lot has to do with who runs…the store.
I’ll leave you with one funny story. Sometime late afternoon a gentleman came through the lane. He came through Marissa’s, and he had a few things in his basket. He was just kind of dressed casually and he just went through the line. He got to the end of the line and he started to help Marissa with the bagging. Apparently he put the eggs in the bag first and Marissa said to him, ‘Oh, no, no, no, no.’ She said, ‘You never put eggs or bread in first.’ She said, ‘You always put something else in and then you can put the bread in. Or you put the bread and the eggs in one bag but you don’t put anything else in there.’ She goes, ‘Or you’ll break your eggs.’ So he said, ‘Oh, thank you very much.’ He said, ‘You saved my eggs.’ She said, ‘Yes, I saved your eggs or they could have been scrambled.’ And the man says, ‘Well thank you very much.’ And he noticed her name tag. It turned out that it was Mr. Shapiro.
Who is the president of Giant Eagle. At the end he introduced himself. He came back to Marissa and he said, ‘I just wanted to tell you, you did a very nice job today.’ He said, and my name is, Daniel Shapiro.’ And she looked at him and she goes, ‘I know who you are.’ He said, ‘You do?’ And she said, ‘Yeah.’ She goes, ‘You’re the president of Giant Eagle. So he looked at her and he said, ‘Did somebody tell you that?’ She says, ‘No. I knew that.’ She said, ‘And you’re a customer.’
Interviewers: Nancy I wanted to ask you when your husband and you, before these kids came into your life, what made you open your home to them?
My husband’s one brother has a learning disabilities and I grew up with a cousin who was very, very physically involved and as a result of an accident. And back in those days, and you probably remember this, there was the belief that if you could retrain a person's muscles that the person would regain use of those muscles. And it was called patterning. And I patterned my cousin for I don’t know how many years. And he…he died. He contracted pneumonia and died in adolescence. And then after college I thought I was going to graduate school in special education. And instead we heard about this opportunity so we took a tangent.
Interviewers: What’s been the best part of raising these people?
Well there are different highlights for each of them. For Marissa it was she played in the international special Olympic games in Ireland back in 2003 in golf. She got a silver medal. For her that was that. For Mickey actually it happened earlier this week. And it was very simple, I had stopped at his apartment to drop of some things for him and his roommate because we hadn’t seen him over the weekend and I was coming by after a meeting and I was just going to drop off some things for them. And I did that but he wasn’t home from work yet. And I was getting in my car to go home the person that picked him up at work had dropped him off.
And I watched him get out of his car, take his keys and get into his apartment. And he didn’t know I was watching. But to me watching him do that, and I know it sounds very simple, but for him that’s a high level of independence. And by the time I had gotten in there, you know, he had hung up his coat, he had, you know, put his lunch box in the kitchen, you know. And his roommate was there and they were talking about what they were going to have for dinner. And I got in my car to go home and I thought, this is…this is good. For him this is good.
For Jimmy. I think one of the highlights for him has been his independence,And I think for him it’s the way he’s been able to settle down the last maybe five or six years and realized that, he can have more fun, he’s going to be more successful if he just settles down.
Interviewers: Who’s had the biggest influence on your life?
Probably the three kids. Because if it wasn’t for them I wouldn’t be sitting here today. That I’m convinced of. I probably would have gone into business in some way. But I would never have had the experiences that I’ve had over all these years so the three of them
Interviewers: What are you most proud of?
Nancy: I helped to found the Down’s Syndrome Center at Children’s Hospital. That was the best job I will ever have in my entire life. In fact the day that I walked out of the hospital I turned around, I looked at the hospital and I said, ‘I’m now leaving the best job I’m ever going to have.’ After all this I could see myself going back. We created a place where people can go for support for years and years and years. A place where there’s good research. A place where physicians can go to, understand more about what they need to understand in order to care and treat people.
But must of all was the support for people, for parents, especially for brand new parents who just had given birth to find out they now have a baby with Down’s Syndrome. What are we supposed to do? And knowing that that place is still there.
Interviewers: What’s been your most challenging… experience or endeavor
Closing Western Center. That was just plain ugly. Trying to convince families that they had to make a decision. The place is closing. The doors are going to close. We’re turning the lights off. You need to make a decision as to where your family member is going to live. And then the day that the center actually closed there were still, 36 people still living there. And crossing the state police barricade, watching these people being put in vans, just watching their faces, just wanting to cry thinking how frightened they must be.
We knew where they were going. Half of them went though two hours from here to Ebinsburg Center. A couple of them went to other…to group homes. But their parents still, raising cane, across the other police barricade line.
And us standing there watching those vans leave thinking, it didn’t have to be this way for those poor people. And the interesting thing is that, a year later, five years later, everybody, the support coordinators, the providers with whom these people live, they’re doing great. Better health outcomes. You know, people who couldn’t work at Western Center are now working in the community.
They have their own rooms. They can go to the refrigerator and get what they would like to eat. That was a challange. Being able to, coming to grips with the fact that no matter what I say to these people I can’t get them to change their mind, you know, no matter how we try to deal with this. And knowing that if you fail their family members are going to live in an institution, not in a home somewhere.
Interviewers: Do you have a hero?
I would say that it’s Eunice Kennedy Shriver. I can’t imagine, what 1960, given the United States back in 1960. I mean we didn’t respect Afro-Americans. I mean women hadn’t achieved what they’ve achieved today. And, you know, she opened her home to establish a camp in her front yard for people with disabilities so they could have a camp. And from there grew Special Olympics worldwide. And as I mentioned before when we went to the world games a couple of years ago, you know, sitting there watching athletes from Iraq and Iran and China sitting next to athletes from the United States and Canada like where else in the world does that happen. And this woman had this vision and she made connections with people and nothing ever stopped her.