Chapter 9: Marion's Death, Leona's Continued Advocacy, Planning for David's Future
Lisa: David and Kate, I wanted to ask you about something that I know is difficult, which is the passing of your dad. I know that your dad passed away in 1994.
Kate: I'm putting my arm up there. It hurts to put my arm up there. There we go.
Lisa: Your parents were life partners and certainly partners in their work. Your father was such a supporter of your mother's efforts. So, I'm wondering how your father's passing affected your mom both in her life and in her continued work.
Kate: That was really difficult. It was difficult because before he died, he had Alzheimer's, and when Daddy went to the hospital, it became really noticeable, so you know, it was one thing at home when everything was constant, but it was certainly different when he went to the hospital and we could really see how difficult, how difficult a time he was having with his memory, knowing who we were, and I think that that, it just was something that I think a lot of people are going through now. You know, we have so many baby-boomers that are aging, and so there's a lot more people today who are experiencing a family member with Alzheimer's, and how difficult that is to watch somebody lose their memory and lose their recollection and the disorientation that goes with that, and so it was very challenging because Daddy was in the hospital, and David was living in his house, and so, my mom was going back and forth between trying to take care of my dad and trying to take care of my brother at the same time, and so it was really very, very challenging and very difficult to manage those things at the same time, and yeah, it was really -- it was really hard. I remember going into -- going to see my dad in the hospital, and I walked into the room, and my mom said, Katie is here, and I remember my dad was sitting in a chair, and he looked around like this. He leaned over and he was looking down, and he said, where is she? And he was managing me as the little tiny me running around, you know, like at knee height, and I walked over in front of him, and he looked up then. He traveled up my body, and the shock that he had on his face of like, it was almost as if I had just grown up in that very instant, and it was pretty shocking, so it's really hard, I think, dealing with Alzheimer's.
It's a very difficult and challenging situation. It also happened to be the year that we had major ice storms in Philadelphia, and so the entire city was shut down, and so there were long periods of time where she couldn't get to David, and she couldn't get to the hospital, and she couldn't physically get there, and so it was really, really, really bad time. Those were very difficult, very difficult months.
Lisa: When we first started talking, you described a little bit about them...
Lisa: ...how they met, the types of music they liked...
Lisa: ...how there was dancing in your house. Would you describe your parents, David and Kate, as soulmates?
Kate: Yeah. They well, gosh, I sure hope so. They had 11 children. I mean, I don't think you do that sort of willy-nilly, so I have really tender recollections. (To David) I don't know if you remember these things, but I have really tender recollections of my parents reading to each other.
I don't know if I mentioned this to you before. I have recollections of them reading poetry to each other. My oldest sister, Barbara, is a poet, and so she would send some of her collection home, and they would read poetry to each other. They would read the newspaper to each other. They would watch Lawrence Welk, and when the band would play, they would get up and start dancing and waltzing in the living room, and so there's a lot of really tender, very tender recollections. And they had been through a lot together, you know. They had been through -- they had been through major things on the political level. They had been through the loss of my brother John and my brother, Walter. They had been through court battles together. They had done a lot of things for the community, the neighborhood, and so, yeah, it was a full life. It was a really full life.
Lisa: Your mother carried on with her work obviously after your father passed, David and Kate. As always, she was ahead of the curve, I think, in terms of her vision of what could be for people with disabilities, and placement I think became one of your mom's passions. I wonder if you can tell me a little bit about her work with Career Net.
Kate: Yeah, employment was a big, a really big passion. Every step of the way, the question really was why not instead of why, so why not? Why couldn't individuals with significant disabilities do these things. Why couldn't or why shouldn't children with developmental disabilities an even significant disabilities be in the school room? Why not live in the community? Why not have jobs? And so everything that we held as part of the American dream, she really saw as the American dream, that it's really, you know, your tired, your poor, that it was 100% of the citizens of the country had a right to aspire to these things, and so how could we make them happen, and so it was exactly the same thing for employment, and the question -- and so this was in the 90s. The question was, what would supported employment look for individuals with significant disabilities, and if you could have a person with vision impairment, or a person who is blind having a seeing-eye dog, then couldn't there be something that's a compensating mechanism for individuals with intellectual disabilities or other types of physical disabilities, and how can do you the adaptation to make a job more suitable for an individual with multiple disabilities? And so, Career Net was the start of a program. A number of families were involved and certainly Dee Coccia for example and Maureen Devaney, and it really was to be able to explore what employment doesn't would be available for individuals with significant disabilities, and how could you do supportive employment, and the whole concept behind that was to have individuals in a little storefront, in a neighborhood, where small businesses happen, and that small business owners would get to know the individuals in their neighborhood, and the individuals would get to know their neighbors, and from that, natural relationships would happen. Natural opportunities would happen, and matches would be made.
(To David) Well, one of the things that we found out about you David was that your preference was actually to sit in a diner and have milkshakes in the diner with all of the diner people, and you preferred that to employment. But even though that was his preference, that certainly just where it stopped, but it was an important part of being part of the community. In neighborhoods in Philadelphia, every neighborhood has a diner. Every neighborhood has a bar. So I guess I'm happier that you chose to sit in the diner and get to know all of the diner people instead of all of the bar people, because it could have been a whole different story, I think.
So, but it really was vanguard. It was ahead of its time to have supportive employment of individuals with more significant disabilities.
Lisa: David, I'm going to ask your sister a couple of questions. Of questions, and then I'll probably ask you some questions too. Kate, your mom had some health problems in her later years. I know she had a couple of strokes, and she had some heart problems.
Lisa: As her health was declining, did she talk to you about her wishes for David's future? I know she had talked about it with you and your father to some extent.
Lisa: But did she become more specific in her later years?
Kate: Um, she became more specific at the very end, so we had a conversation. My mom had gone into the hospital for heart surgery. She was scheduled to go in for heart surgery, and the night before her surgery, they sat and talked for a good portion of the night, um -- I'll see if I can do this.
(To David)It's hurts when you do that. So, the night before her surgery, we sat and talked. We talked about a lot of things. We talked about - (To David) I can't talk when you are grabbing me like that. Thank you.
Kate: (To David) I know. This is a hard thing to talk about, right? So, we spoke about a lot of things, and I asked her if she was afraid of dying, and she said, no, that her fear wasn't about her dying, that her fear was about what would happen to David, and um, and so I said that she didn't need to really worry about that, that I would, you know, that I would make sure that things were taken care of, and that David would be taken care of, and that she didn't need to go into surgery with anything other than the thought of getting better. She had some very specific requirements that she told me. She said that David was living in his house, and that you should not move your house.
Lisa: Kate, you were going to tell us a little about your mother's thoughts regarding David's future as he discussed with you before she entered the hospital.
Kate: Yeah. She had some very specific instructions, so for example, (To David) the house that you were living in, she said that I needed to always keep in mind that the house that he lived in was his own home, and that the people that he lived with were his family, and that I should always treat them as if that is his home and his family, and so I should never ever ever move you from that particular house.
Um, we had conversations about David's rights and David's independence, and that I should never ever ever take guardianship because that would be a violation of David's individual rights, and she said that I needed to make sure that I never -- that I never had him take over my life.
(To David) I don't know how to say that differently, that I had to always appreciate that you were a separate and unique individual and you had a right to your life just as I had a right to my life, and um, so, she was really very specific about what the future should look like.
Lisa: Had she take than any time, do you think, Kate, to reflect on her own life's work at that point?
Kate: Yes, she certainly had. I know that in those last couple years, she was feeling very sad, and that she felt that through all of the changes that had happened, that she was unsuccessful, that she really felt like she was not successful, and she wasn't able to move things forward the way that she had anticipated moving things forward, and it's really, you know, it's really sad to think that she dedicated 47-some years to the entire movement, and really was a force for the movement to be moving, you know, that it wouldn't get static, and that she kept pushing it and pushing the limits of it, but I also gave her sort of a lack of perspective about how far she had already come, you know. And I didn't really realize this until maybe about two years ago, and I had the pleasure of meeting a young lady who was a teenager. She was about 16 years old. She was going to high school. She was in all the same classrooms as her peers, a young lady with developmental disabilities, a really fabulous young woman, and when I spoke to her about her life, she talked about the boyfriend that she was having trouble with and the school work that she hated and her history class was a bore. She talked about what she wanted to be for her career, what college she would go to, where she would live, and was really moved by this, because I just wished that -- I just wished that my mom had lived a little longer so that she could have seen what she had accomplished, because I really think that that's sort of the testament to what she accomplished, and not just her, of course. A lot of other parents, they all put their lives on the line. They put their children on the line. They put everything on the line, and I think that it's difficult for many parents to have a perspective about how far they've been able to take things, and um, I just wish she could have lived a little longer, and she could have met this met in young woman personally to see how far it had come.
Lisa: What do you think she would have thought of her?
Kate: She would have adopted her. No offense to the young lady's mother, but yeah. No, I know that my mom would have adopted her and would have mentored her, and you know, would have lit a little fire under her butt to just be extraordinary.
More Interview Chapters
- Family Background
- Walter and David Fialkowski, and Leona's Early Advocacy
- Raising Children with Disabilities in the Absence of Supports
- Leona's Early Advocacy, Longfellow School, Evolution of Education in PA
- Inclusion in Public Schools
- Walter at Woodhaven
- Leona and Work for Pennhurst Special Master, Walter in Community, Leona Resigns from Woodhaven Board
- Walter's Death, Finding a Path for David
- YOU ARE HERE: Marion's Death, Leona's Continued Advocacy, Planning for David's Future
- Kate's Advocacy, Leona's Legacy
- ADDITIONAL MATERIAL: Home Movie Footage - Longfellow School, 1968, Bridesburg, PA, by Leona Fialkowski
About David and Kate Fialkowski
Born: Philadelphia, PA. David: 1962. Kate: 1964.
Kate: Executive Director, ARC of Maryland.
Leona Fialkowski, Community Living, Employment, Civil Rights, Longfellow School, Pennhurst, Right to Education, Siblings, Woodhaven