Chapter 10: Kate's Advocacy, Leona's Legacy

Lisa: David, I'm sorry. I'm going to have another question for your sister. Certainly, again, as we've talked about a couple of times, and Kate when your parents talked about your role in supporting David when they were gone, but I wonder if there was have a moment when you understood that your mother was passing on the mantle of her advocacy work to you? Was that ever something that you think she intended to do or something that you thought you would do?

19:42:56:26-19:52:08:22

Kate: I never thought that I would do it. Throughout my parents' story, everything that they did was never for David or Walter, that it was always for everybody else, for equality for everyone else, and they passed up a lot of things for David that would have benefited David and Walter individually for what would be good for everyone, and so I started out really sort of the opposite, like I don't care about anybody else. I don't have the emotional energy for everybody else, and so, certainly when I started, it was really specifically about David and what would it be about David, and also, it was really hard. That was hard enough, because I felt that I couldn't possibly live up to my mother. I mean, she was so remarkable, so everything. She was so amazing for the long haul, you know. You know, this was my entire life, and how do you live up to that? You know, there's no way, and anything less than that to me seemed like it wouldn't be good enough, not enough, not that it needed to be perfect, but just not enough, because it takes so much energy to move a movement, you know. So, when I started, I was really fixated on just what is good for David, how do we get things for David. It took me a long time to deal with figuring out what's my role and that my role as a sibling is not necessarily the same as a mother's role. Our relationship is not a parent-child relationship, so I'm probably tougher with David than my mother would be, you know. Siblings don't let each other get away with anything.

[David's Voice]

Kate: (To David) I know, that's a problem, isn't it. Right? So, I really was just so focused on David individually, and I'm still kind of moving away from it, you know. I had an awful lot of trouble with it in the beginning. In the beginning, my mother died, and two weeks later I was at my first planning meeting. It was just two weeks later that was the first planning meeting, and I walked into the first planning meeting, talking about, you know, David's vacation and self-fulfillment, and items on the top of Maslow's hierarchy. Right? You know, I mean I was way up there in the stratosphere, and um, you know, David came in. He had problems. His clothes weren't right.

He couldn't show up for the meeting on time. There were some medical issues going on. There were some car accidents that had happened, and I thought, well, I have to come down out of the stratosphere, and let's just deal with everyday needs. And this was shocking to me, because even though my mother did all the everyday needs, and certainly David and Walter lived at home, she washed them, she bathed them. She did everything around the house, but the conversation was also about the stratosphere. The conversation was always about equality, and there were big conversations, and there were researchers in the house, and it was all about big conversations about the movement, you know, this movement. So it was kind of a shock to wake up one day, and there was nothing about the Movement. There were things about health and safety and daily living and the staff turnover, and would there be any consistency, and was David safe, not even was David happy, but was David safe. So it was really a huge wake-up call. It was shocking, and so it took many, many years. It took many years for me to make it through to realizing that choices are often about making a choice between two bad things instead of choosing the right thing or the good thing. That was really hard to understand. It was really hard to realize that you wake up every day thinking what if something happens to me, and that's a daily part of life. It's a really hard to get the phone call and the beginning of the phone call says -- the beginning of the phone call says, we are in the hospital, you know. That's pretty shocking and pretty hard.

(To David) And then there was sort of like this transition that I realized that -- that I realized, in order to do something for you, I really had to think about what it meant to all of the other guys in your house, and in order to think about what it meant to the guys in the house, I realized I had to think about what it meant to the provider, like there's not enough transportation, so if David needs to get someplace, then what does that mean in terms of transportation for everybody, or there's not enough staffing, so how does that work, and how do you have people together for staffing. And so, you know, just a little bit at a time, you start realizing that it's impossible to do for one without considering the whole, without considering the system, without considering the constrained resources, and so little by little by little, little by little you just keep moving forward.

The things that don't change probably the best thing if I had to pick one thing that my mother gave me, the one tool that she gave me, it wasn't equality. It was never giving up hope, so that idea that you never know what tomorrow can bring is the most amazing thing. It's the most amazing thing. So the story of David learning to walk and the repetition of that and trying that, and you know, ten years later, David is walking, you know, in my recollection for example, (To David) I remember when you used to speak. I remember you talking at home. You remember you calling me Katie. I remember you calling everybody by name, and you know, so, I know that one day that there's this -- there is this communication, and that David not only can express himself as he does express himself, but there is also some words in there, and that there is communication in there that is happening between us, and so, the most amazing thing that has happened has been that about a year ago, we tried the iPad together, and we had an application that had a piano where there were two keyboards facing each other, and I touched my side, and David touched his side, and I touched my side, and then you touched your side, and it was the first time that we had a conversation, and so, we had a conversation together like that through the iPad, and this way that we are together was actually facilitated by that event and by being able to have something between us like that that facilitated our communication in this way together.

So, yeah, so my mom gave me one thing more than anything else, and that was I was not blessed with patience. I was not blessed with her patience, but she did teach me hope, and so, some days are hard, and some days are scary, but every single day is full of hope. Lisa: You were talking about what your mother taught you, Kate, and it's so incredible to hear how many people your mother inspired. There's certainly a generation of women that look to your mother as their mentor, as their guide, and I wonder if some of those women are women that you're connecting with, if in fact they're in turn mentoring you.

19:52:42:23-19:56:55:08

Kate: Yeah. It's been -- it's been really most remarkable thing. So, in Philadelphia, Dee Coccia and Maureen Devaney have sort of adopted me. I hope they don't mind my saying that, but really, they became mentors to me and helped me sort of understand where the Movement is more recently, what is the status of things more recently, what is the status of regulation, what's the status of, of real peoples' lives, everyday lives in peoples' homes, and so they've sort of taken on that mantle that it is coming full circle. But it's been even more than that, so as I have just moved into the field a couple years ago, I was traveling around the country. I worked at the Administration on Developmental Disabilities as a fellow, a Joseph Kennedy, Jr. fellow, and as I traveled around the country, to different listening sessions that we were hosting, in almost every location a person came up to me and said, I recognize your last name. You wouldn't happen to be related to someone named Leona Fialkowski, would you? And um, and then I would explain that I was her daughter, and um, and each of them told me a story, um -- each of them told me a story about my mom, and um, it's the nicest think about moving into the field, because I feel so close to her. It's also really sad. She inspired so many people, and it's the same thing, that she inspired people, not for something specific, not for a specific cause, but just the concept of that hope and that capability to think forward and to think in the future, and I think that it was her unique gift to be very strategic. She was always ahead of the time, ahead of where things were. She was always on the front end of the wave, and it was a gift that she had to be able to communicate that to other people, and that people would follow her into the storm.

Not everybody did. So, there were organizations and people and affiliations that thought that she should just stop, that enough was enough already, and you know, that we've won something, so stop it already, and she never stopped. The value of never stopping is every day there's a new parent that has a child with a developmental disability, and for that parent, it is day 1. They have nothing before them. They have no history in it, and so, for that parent, the moment that they find out that they have a child with a developmental disability, they are beginning to think about the future and what happens when something happens to them, and what is the future going to be for their child, and so, to keep everything moving forward is so critical for every new parent that comes along, and it's wonderful. All of the people along the way who have been given back.

[David's Voice]

Kate: (To David) What? I know. It's really hard for me to talk about Mommy. I'm sorry.

Lisa: David and Kate, your mother once wrote something speaking of new parents and next generation. She wrote, "the torch must be carried by the parents of the younger generation, an the tools that I give them to overcome their obstacles are the following: Never-ending hope, perseverance, and the unequivocal belief that all people are created equal." Kate, as you pick up the mantle from your mother, I'm wondering how your vision is the same as your mothers and maybe are there places where it's different?

19:57:37:27-20:03:02:01

Kate: Um, you know it's interesting. I remember like it was yesterday when she wrote that, and the Olympics were going on, and the Olympics are now, summer Olympics now, and it was a moment in time where she was done. She was supposed to actually go to an event, and she said she couldn't. She refused to come, and she sent a letter instead because she couldn't do it. She knew that it was her swan song, and she couldn't do, couldn't stand in front of them to do it, and I think that it's interesting because what -- it's not just what she passed to me, but what the whole experience passed to me. You know, it was my entire life, my entire upbringing, every place that I went, every early childhood recollection, I have very few childhood recollections about, you know, jumping rope and riding bicycles, and I have thousands of recollections about being on a picket line or being in court or meeting a council person or going to D.C. or Harrisburg, and so she taught me some really, really important things, or I see things. I can see things in this way that you have to have a long view, but you have to pursue it in ways in the short term. So, for example, she was very aware that in the time that she started the Civil Rights Movement was happening, and she understood that that was happening, and so how can you capitalize on that and use that momentum to help you go forward, and so, I really learned a lot about how to do systems change in a macro-scale from how my mother worked the system, the bigger system and understood when there were ebbs of the tide and how to go able to go with the ebb and flow with the movement and the momentum to be able to get people going with up and rushing forward and then to take a break.

So, it's sort of like physics. It has its own dynamic associated with it. Also, though, I was so impressed with, I mean as an impression with everything that happened with my brother, Walter. That - that is really what drives me. It's more than with David, what happened with Walter is what drives me, families getting separated, and children being institutionalized because there are no family supports. I understand perfectly what happened with my parents as they were aging and they couldn't physically do it anymore, and I can never blame a family for making choices based on what their individual needs are, but I do blame the system, and so I think that it is our obligation to create systems that give people hope and capacity instead of depleting people from their hope and their capacity, and I just think that that's really important, and probably the last thing is a factor of human dignity that I think the people who call themselves the activists and who talk about it in terms of a movement are doing it because they see a human dignity in all mankind and that there should not be a person's looks or a person's capability or a person's wealth or a person's intellectualism that sets the bar for how you treat someone, that all people deserve human dignity, and that we should be furious when that is trumped upon, and we should challenge up the hill to do something about it and take a stand, and stand and fight, and that's where the fight language really comes from, because you know you're really protecting people who may be vulnerable at certain times.

So, those were the things that I think were really sort of handed down, not through a conversation per se, but they were handed down because I was there to bear witness. I was there to bear witness for 40 years to see the evolution of the Movement and to see what it's going to take to perpetuate it, because we need to perpetuate it. It's not over yet.

Lisa: Well, and that is an interesting segue. Again, I'm pulling another quote, this one from Tom Gilhool, who was another of your mother's many admirers, and of course the architect of the Right to Education case. He wrote about your mother, "She never ceases managing fighting and creating. Leona changed the world in ways that cannot be undone but which require attentive vigilance and frequent bold insistence, and given where the disability community might find itself today because of budget cuts and different philosophies." I'm wondering - -

Kate: David is going to stand up. I don't know how that works for the shot.

Lisa: It's different.

Kate: (To David) Are you going to take off? I know we said that we had a wrap-up time, and we have exceeded it, have we not?

Lisa: Have we? These are my last two questions, David.

Kate: (To David) These are the last two questions.

Lisa: Last two. Can you hang out with us a little longer?

Kate: (To David) Can you sit down for the last two questions?

[break]

Lisa: I guess in all of that, my question is what you think it will take to inspire the next generation of leaders.

20:04:16:14-20:08:20:12

Kate: Yeah, you know, we talk about that all the time, and I'm not sure of the answer. Maybe it was easier then because there was nothing to lose, you know. There was nothing to lose. The first set of parents through, what they had to lose was that their kids wouldn't go to Pennhurst, wouldn't go to an institution, and you know, so there was sort of this scary backstop that you don't want to go back there. You don't want to go back there, and for that generation, they all have a recollection of what that was, that that generation all remembers Pennhurst, and they remember going into Pennhurst to put their children on waiting lists, and they all saw it first hand, you know. They saw what that looked like firsthand, so they were moving from the darkness to the light, and so, they were boldly going into the light. Now I think it's a lot harder, because people have something to lose. They are afraid to do work against their school systems because then there will be a retaliation.

They're concerned about retaliation from the school system on to their individual child, and you know, that their child will get downgraded from a mainstream classroom into a segregated classroom, and so I think it's harder for people today, because they have more to lose to stand up and fight you have to be willing to lose as well as taking the risk to win. So, I'm a little concerned about it. I think that we are going to have tremendous pressure that comes on the system because of the aging baby-boomer population. Our family represents the entire baby-boomer population, so my oldest sister to me is the baby-boomer generation, and I know we are all getting older.

So, there's a huge aging population, aging in volumes. There is, we are looking right from the face of the potential end to entitlement programs, pressure on Medicare and Medicaid and Social Security. We don't have a family supports network paid for, so as the money that we have been seeing over the last few years, the money is dropping out of the system. It's just falling all on to the families and creating that same level of desperation, and so if families don't say stop, stop, stop, those of us who were there then, who were there to bear witness then, we know where that path leads us, and that it leads us right back into the same solution, which is a volume-based solution of warehousing a ton of individuals. We still see it in nursing homes every day. We still see it for the mental health environment more frequently than we should still today. So, it's concerning, and I think that we really need to make sure that all of us who know some of the history are out there telling the stories so that no one can forget. People need to be reminded what nothing really was, and our state's, our state developmental disability agencies can't think that everything is OK because people are staying at home with their parents and so it costs less than having the state centers. That's still not a funded system. So, I don't know what the solution is, but people need a wakeup call.

Lisa: Last question. David, thank you for hanging on with us. Last question. And it's a question for both of you. David and Kate, you witnessed your mom's incredible life, both your parents' incredible lives, but in thinking of your mom, as much as she meant to the movement and to so many peoples disabilities, at the end of the day, she was your mom, so I'm wondering if you could maybe reflect on her legacy not as an advocate, but just as your mom.

20:08:55:02-20:12:14

Kate: Um, it's pretty much the same, you know. Um, as a mom, for me, she did exactly the same things, and my dad too, my parents had the same wishes for me that they had for you, that they just wanted us to really be everything that we could be and to reach our own individual full potential, and that as big as we could dream is what we would be able to achieve, and my dad, for example, when I was small, you know, a lot of things were happening on TV then, so TV was sorted of the big thing, and so we would watch Miss America contests together, and my dad would say, do you want to be Miss America? And we would watch the presidential elections, and my dad would say, do you want to be president? Because by the time you're grown up, they'll be able to have a woman president, and so you should consider if you want to be a president. You know, do you want to be a president? And then we would watch the moon landings, and he would say, do you want to be an astronaut? Because you could be an astronaut, and at that time, you know, women certainly weren't doing any of those things except Miss America, you know, and so they really instilled in me that life was full of potential and that the best thing that you could give yourself would be options, you know, and that's everything they did for everybody else was they didn't solve it for people. They never solved it for everybody. They didn't try to answer for everybody, but what they tried to do was give people options. Parents who didn't choose the same way that our parents chose still benefited by their work in giving them options, and that it benefited not just individuals with developmental disabilities, bus it also benefited individuals with very high IQs on the other end of the spectrum who needed a specialized education for other reasons. So everything they did for the Movement, they also did for me personally, and as a result, I've traveled around the world. I've lived in multiple different countries. I learned to speak multiple different languages. I was a top executive of some of the biggest fortune 100 companies, and you know, and now I'm doing this, and so, it's been a great ride. It's been a great ride, and um, certainly it's all because of what I saw them do, a hundred percent.

Lisa: Thanks David. Thanks Kate. Do you have anything you want to add?

Kate (to David): Do you have anything you want to add? Nope? Ready to go? OK.

Lisa: OK. Sounds good. Thanks.