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David and Kate Fialkowski chapter 4




chapters

Chapter 1: Family Background
Chapter 2: Walter and David Fialkowski, and Leona's Early Advocacy
Chapter 3: Raising Children with Disabilities in the Absence of Supports
Chapter 4: Leona's Early Advocacy, Longfellow School, Evolution of Education in PA (you are here)
Chapter 5: Inclusion in Public Schools
Chapter 6: Walter at Woodhaven
Chapter 7: Leona and Work for Pennhurst Special Master, Walter in Community, Leona Resigns from Woodhaven Board
Chapter 8: Walter's Death, Finding a Path for David
Chapter 9: Marion's Death, Leona's Continued Advocacy, Planning for David's Future
Chapter 10: Kate's Advocacy, Leona's Legacy
ADDITIONAL MATERIAL: Home Movie Footage - Longfellow School, 1968, Bridesburg, PA, by Leona Fialkowski

transcript - entire interview

David and Kate Fialkowski Interview (Word)


transcript - current chapter

Chapter 4: Leona's Early Advocacy, Longfellow School, Evolution of Education in PA

16:55:06:28

Lisa: You mentioned that parents were starting to connect and form groups, although what you've just described, Kate, sound a little more informal. I'm wondering if your mother ever became part of one of the more formal groups, and David, maybe you remember this as well. Did she become part of an ark or any of those more established parents' groups.

Kate: My, um -- (To David) I keep doing that, and I apologize for doing that. I'm actually more used to telling the story without you sitting next to me, so I'm really sorry. So, our mother was affiliated with The Arc, but she created her on organization called the Association of Severely Handicapped children, and -- no, that's wrong. It was the Associated of Multi-handicapped Children, the Association of Multi-handicapped Children, and it was created as a nonprofit organization, and as the Movement was building, there were certainly a lot of children who had disabilities that were more easily classified, and because it had one name, right? Tay sachs was one name for something. Downs Syndrome was one name for something.

[David's voice]

Kate: (To David) Is it OK for me to tell this? So, for parents with children who had multiple disabilities, it was actually very difficult to be able to work with professionals to work with doctors, and teen be able to get air time on any issues because it was something that was unclassifiable, and nobody knew what to do with it, so in a time when nobody knew what to do anyway, it was sorting like standing at the end of the line, so other people weren't getting served, and then when they did, it started at the more definable part of the line before it went to the end of the line, you know, so she created this parents organization. But I think that probably the most defining, I would say that the most defining parents' group was when you and Walter went to Longfellow, and mom started the school at Longfellow, which was really a parents' program, and that was sort of the big event, so a group of parents came together, again out in the light of day, into a public school setting, and the parents worked together to be able to provide support for each other and support for their children in this collaborative-type setting.

16:58:12:28

Lisa: Thank you. What you've mentioned about Longfellow is a great segue into my next question. Correct me if I'm wrong. In '65, which again is nearly a decade before the right to education case, your mom started to petition the school board.

Kate: Yes.

Lisa: I don't know if you remember that, David, to see if she could open a school for children with disabilities.

Kate: She tells the story that she actually started when Walter was little, and then you know, she just didn't have enough time to be able to make head way on that, so her really significant start, in 1962, David was born in 1964 I was born, and so, by 1965, she knew that her kids were done. You know, she had stopped having children, and she wanted to be able to do something that would be in time for David to be able to go to school. (To David) So Mommy's goal was that you would be able to do all the things that Walter had never been able to do, and so, she started early so that you could actually get to school in time to be at school during the typical years that kids were in school, and she figured she had to start early, because everything took so long that maybe if she started then, she would be able to get something going by the time that David was five or six years old.

16:59:56:22

Lisa: David, I'm sure that your mother took both you and Kate, maybe even Walter, down to the school board when she was petitioning them or talking to them about opening a school. Do you remember any of her interactions, either of you, with the school board or how they received her?

Kate: Yeah. So on those trips, David and Walter were typically at home with the older kids, and I think that it was also about the time that our sister, Mary, was moving out, so there were older kids that were sort of out of school, you know, already able to help. I remember going down with -- I remember going to the school board with our mom, and it was a really painful process. First of all, we didn't have a car most of the time because our dad took the car for work most of the time, and so to get there, we took public transportation, so this was sort of an all-day trip to be able to go from one bus to another bus to another bus to get down to the school board. I remember that getting down there, even with an appointment, they would often not see her, and so we would sit there in the hall, and she would say, I'm not leaving until I see them, because I've come all this way, and we have an appointment, and you know, she couldn't do it, just come back tomorrow. There was no way to just come back tomorrow. It required too much planning, and so we would sit there until somebody would see her, and in a lot of those meetings, -- and they would have open meetings like school board meetings, like town hall meetings, and so she would go talk at the town hall meetings, too, and a lot of those professionals at the time didn't want to hear anything about it, that there was nothing we can do; we don't have any money. The only obligation of the state is for an individual to end up in an institution, and really by law, the way the code was written, if I remember it right, a child would get seen and get classified, and by being classified, there was an exclusion to any education. They would get taken off of a list, and so, if it wasn't part of the categories that the schools were interested in, they had no time to be able to hear about this. So, she just did it for years. She never went away, you know. It was sort of the same thing as the string story in teaching David and Walter to walk. She just wouldn't go away. She just kept going back day after day after day after day, and the reason that that works is because they leave, you know. Jobs turn over. You know, so you just keep knocking on the door until hopefully there's somebody new at the door, and they answer the door with a hello instead of a good-bye, and then you work it, but one of the things that she was able to do is she was really able to relate to everybody in terms of being a parent and what would you do for your child, and if she could get someone to think about this as their children instead of people with disabilities, you see, when people thought of people with disabilities, they were non-people, and so, people didn't relate to children with developmental disabilities as their own children. They related to them as non-children, because they were the children who were put away, and they were the children who weren't seen, and so people didn't relate to that, and I think that, you know, one of the advantages of mom having 11 kids is that she could tell a lot of stories about children and make it a highly relatable topic. So she had a lot to relate to, and finally, she was able to find a guy at the school board who listened to her, and then they made lots of phone calls, and the principal at Longfellow school said that he would take a pilot program, and it began. And I think it's interesting. There's all that fighting and fighting and fighting, and then it just takes a couple phone calls, and things can move, you know? But it takes all of that to lay the groundwork for it to happen.

Lisa: David and Kate, do you remember your first day of school? Oh.

17:05:23:22

Kate: (To David) Do you remember the first day at school? I remember those first days of school. I don't know if you do. The first days of school, it was in the summer, and um, I think it was the summer of 1968, around the summer of 1968, and it was in the summer because we were allowed to have this school, but it was only a pilot program, so school was out of session, and it was July, and the school room was up on the second floor. Our house was just down the street from the school, so our mom had David and Walter. David was in the wagon. I don't remember if Walter was in the wagon or walking, and we just add block to go to the school, but wasn't we got there, it was up on the second floor, and so, David and I stayed at the bottom of the steps, and then our mom went with Walter and helped Walter up the two flights of steps. (To David) Do you remember that? I don't know if you remember that.

[David's voice]

Kate: (To David) Do you want to wipe your face? Wipe your chin. And so, she went up the two flights of steps with Walter, to get Walter up the two flights of steps, and then came back down, and David was not walking then, and so she would come back down, and she would carry David up the two flights of steps and then come back down and get the wagon and take the wagon up two flights of steps, not two flights, but you know, two stories, so it's actually, what's that? Two for every story, you know, so yeah, so that was every day was sort of this the middle of July, you know, 90-plus degrees and humidity, taking kids up to the classroom, and the first classroom was an empty classroom, and in it were little chairs that little children sit in, little chairs and something that they call a balance board, and the balance board was a plank of wood that sat on the floor, and that was it, and so, it was an empty room with a bunch of parents, kids and chairs, and that was the first school room. When I think back on it, I think, though, that it is a really remarkable thing that I remember.

First of all, the children were all different ages, so I was four years old, and I think that the oldest kid was 17 or 18 years old. George Michalak was the oldest kid's name. Robin Greenstein was in the class, Nancy Greenstein's daughter, and then my brother, Walter, a young man named wade Lee I think was his name, and a couple of other kid, and so it was a broad range of children, different ethnic backgrounds, different colors, different everything, different ages, different parents, and all of these parents got together in this circle and worked with the children, and it really was a question what can these kids do? What can these kids do? And it wasn't what can't they do, but it really was, what can they do? So it was so experimental, and all of the children walked along the plank to see, do some children need to learn how to walk? Do some children need to learn how to feed themselves? They had simple things like a Maxwell House can and paperclips, and the kids in the class room would drop the paper clips into the Maxwell House can, which seems really silly, right? But it was about eye-hand coordination, so everything was an inquiry, how does eye-hand coordination work, and how do people work with taking commands, and what's the social integration aspect of this, so if I'm sitting with you doing something, will you do what I'm doing because we are mirroring each other? And so, it was a really remarkable and progressive setting for everybody to sit there and to learn together, and there was nothing. It's sort of a recovering theme. There was nothing.

17:09:55:17

Lisa: How did your mother find children and parents for the school?

Kate: Yeah, I love this story because it's true. A lot of these stories are parents passing the stories on to each other, but in Philadelphia, every neighborhood had its own little community newspaper, so there was a newspaper called the News Gleaner, and it was a local community paper for each of the little neighborhoods, so our news gleaner had an article, and the article was only about three inches long, and it was a story that said, come bring your children, and the only requirements that you have is that you can't drop them off, but you have to stay, and you have to be willing to work, and so, parents found this little article in the newspaper and showed up, and um, and it was just a pretty remarkable, pretty remarkable thing.

17:10:59:13

Lisa: And were there any trained teachers at this school?

Kate: In the beginning, there weren't really any trained teachers. There was one teacher. I can't remember her name, and the principal, it was during the summer, and so the principal would come in, too. I think his name was Jerry Murrow, if I'm not mistaken, and I can't remember the teacher's name, and um, but mostly it was the parents, because nobody really knew, and so everybody was kind of learning and experimenting together. Through the years, the teachers changed, and there was a teacher named Marjorie Goodwin and then a teacher after that whose name was Mrs. Rifkind, so as the school went from a pilot program to a real school program, then they starred bringing teachers in, and started staffing the class and making it more official instead of an experimentation program.

17:11:56:20

Lisa: Who was developing the curricula for this program?

Kate: The parent were, so the parents sat there. Some of it was traditional. What I remember is some of it was traditional, like you would have in kindergarten, but a lot of these kid were teenagers, you know, so it didn't work, and so, the parents would take something that was a kindergarten event or a kindergarten task like singing songs, and instead of, you know, singing "Good Morning To You," the parents, I remember this, the parents would remember like songs of their own childhood, and they each had different songs, because these were women who came from completely different backgrounds, and so they would sing, sometimes they would sing like a church hymn, and sometimes they would sing a spiritual, and sometimes they would sing -- back then there were even songs for the people who were -- slaves had their own set of music associated with them, and so it could be songs from anything, whatever those families' backgrounds were, so the parents would take some curriculum that wasn't appropriate and try to make it more age-appropriate and is it with the children so that it would match this range of ages that they had between them.

17:13:33:08

Lisa: Apart from benefits to the children, it sounds like an amazing opportunity for the parents to connect.

Kate: It was, um, I think that it was empowering. My recollection is I remember everybody sitting in a circle, and all of the children were sit in an internal circle, and the mothers would sit behind them in a circle when we would sing these songs, and it was so empowering because these were parents who were living lives that were hopeless. There was no hope. There was nobody to help. There were no resources, and you know, I don't remember any of that feeling in the classroom. All of the feeling in the classroom was about, you know, power and hope and what you can do. Every child who was in the classroom was encouraged for what they could do instead of corrected for what they couldn't do, and so, the parents were really there for each other. It was the most remarkable -- I don't even know how to explain it, the emptiness of the room, and all there was, was a circle of children and a circle of parents, and they were having a program, no chalk on the chalk boards, you know, no equipment, no ambulaters, no nothing.

17:15:21:06

Lisa: How did the program change, or did the program change, David and Kate, when a teacher was brought in, when more quote-unquote trained teachers were brought in?

Kate: (To David) Yeah, I don't know if -- I don't know if you remember this. I remember. I do remember these things. Yeah. So, when the program started getting more professional, it started falling apart, and so, when the parents started the program, like I said, they modified everything, and they were in a period of discovery, and they were each learning from each other, and they were learning about the children who were there, and it really was what can we do, and the potential was unlimited, what can we do. As the program became more mature and it stopped being a pilot program and more professional teachers were brought in, then the teacher was the one who was in charge and who said, this is what it is supposed -- this is the way that it's supposed to be, and so, it moved away from this highly interactive social kind of thing into this more, you know, third party, very more removed, you know, the professional is more removed from it. These are the right things that we are supposed to do, and it happened too fast, I think, retrospectively, moving from that discovery period into the oh, this is the way we are going to do it. That was such a short time period, if it had taken a little longer, everybody probably could have developed to it, and it could have all developed together. Anyway, I remember very distinctly my mother was furious at what the program had become, because the empowerment went away, the involvement went away, and I remember this.

(To David) I remember you and Walter coming home and what you were supposed to do was to cut out little things from a magazine and to paste these pictures in a book. That was really ridiculous. It was just a ridiculous kind of task. I remember that David and Walter were really struggling with fine motor skills, and they were using gross motor skills, and they couldn't do scissors to be able to tear something out, and a picture in a magazine was such and abstraction, so they went from, the program went from people looking at each other and mirroring each other and hands-on working together and breaking tasks down from one thing to another to this level of abstraction of pictures in a magazine getting cut out so you could find things that began with the letter P, and these were children who previously, for example, the parents had -- we used to have smocks when we were kids so that if we were coloring we wouldn't mess up our clothes, so the parents would take these smocks, and then they sewed on some really big buttons, and so the kids who were in the class could learn how to dress themselves by using oversize buttons and putting the smock on, no difficulty with sleeves, put the smock on, close the smock on, button the oversize button, and that this was a button, you know, because you're touching the button, right? To go from that to cut out a picture of a button and it starts with the letter B and let's say the word "button," the disparity between those two things, it just really sent my mother over the edge. (To David) So, um, so she fought very hard get you and Walter in Longfellow, and then she won, and she promptly took you out. So, I don't know.

17:19:51:22

Lisa: And where did you go to school, David, when your mom took you out of Longfellow?

Kate: (To David) After you went to Longfellow, so part of your, you know, part of your story is, after you went to Longfellow, you then went to the boys club to go to school, and so you still sat in another classroom with some kids at the boys club, where some of the parents continued to figure out, how does this work, and to give you the education they thought that you needed so that you would gain in independence, and both you and Walter were in that program. Were you both over in Bridesburg, in the boys club in Bridesburg.

17:20:43:17

Lisa: You think professionals at this point, Kate and David, were beginning to realize that parents had the expertise when it came to teaching their children?

Kate: Um, there were different kinds of professionals, so there were the school teachers and the school district, and they did not, because for the school teachers and the school district, they didn't want children with disabilities in the school or in the classroom at all. I mean, you know, the school system fought that tooth and nail. But what started at this time is there were others who were professionals in the field, and they were researchers, so people like Lou Brown from Wisconsin, he had a young man with him. His name was Ian [?] who came out, so there was whole cadre of other professionals from around the country, who started coming into Pennsylvania as the court cases were being developed, and so these researchers came and said, we are not sure. They were researchers, so they had hypothesis, and they wanted to prove this as a research methodology. Can children with disabilities learn? Can children with significant disabilities learn? Can children with multiple disabilities have compensating techniques to be able to get around those multiple disabilities, and can they learn?

Because, the professionals in the school system said the answer is no. Don't bother. They said, this is as good as it gets. You know, forget about it. Children have a mental age limit, and they would get, you know, not just labeled with a word, but they would get labeled with an age, you know. He has the comprehension of a one and a half-year-old. He has the comprehension of a four-year-old, and so individuals would get a mental age put on them, and when they got the mental age put on them, it meant that's the end, that's as good as it gets. That's all you're ever going to be, so and so if you have a mental age of one and a half years old, then we are going to continue to treat you like you are one and a half years old, and that's all there is. And then when the professional researchers came, they said, I don't know. Is that true? I don't know if that's true. Let's prove this, or let's disprove this, and let's sit, and let's be open to what it could be, and those professionals came from around the country, and they sat down with the parents, and they said, let's try these things. Let's experiment with these things. We had professionals come to our house, and I remember sitting there think, this is the most ridiculous stuff I've ever seen. They would come with bicycle gears to see if David and Walter could take the gears apart and manipulate the gears and put the pieces back together, and I'm like, of course not, and my mother would look at me, and she would say, how do you know? And I would say, well, and then she would say, David wasn't walking at the time. She said, but you can't ever give up hope, you know. Of course, retrospectively, after I saw David walk, I thought, bring those gear boxes back here again. Let's give that a try again. You know.

17:24:45:07

Lisa: So, your mom had started, David, and Kate, the Longfellow school, and she started a second school at the boys club. There was a point where the two schools were compared, maybe by some of the professionals.

Kate: Yes, they were.

Lisa: And what did they find when they compared the two programs, the more formal, and then the more intuitive and experimental program that your mom had created?

17:31:43:20

Kate: I remember going to the boys club program, so you know, a little story about the boys club program. First it wasn't in a classroom anymore because it was in a boys club, and it really was boys club back then. They had boys clubs separate from girls clubs. One of the think about the boys club program is that there were boys in the club, and so oddly enough, it was something that was even more inclusive, because the parents could get the space for free, and they could use it, and then some of the kids would actually be playing ball or whatever at the boys club. So it was sort of an inclusive space. The parents were still working very closely with the kids, and the parents had started doing these -- again, they were still sort of experimenting, so I remember that there was this big doll. I can't remember the name of the doll, and she was about -- she was taller than me, this doll was taller than me. I was little, so she seemed enormous, and so one of the things that the parents did was they had recorded conversations on a tape player, a cassette player, and so they recorded it and then put it behind the doll to see if children would interface with the doll in the way that they would interface with other people, and so you know, it just continued that there was this sort of experimentation for the parents to have typical behavior, socialization skills, how do you do socialization skills, life skills, independent skills, and this was really important, because again, the kids were old. These weren't -- we weren't starting the classroom with all kids that were two years old or three years old or four years old. These were kids who were like Walter. They were grown -- they were getting ready to go out on their own. They were supposed to grow up, you know, so this program at the boys club remained very experimental in that way, and the whole emphasis was on this typicality, how do you make something that is typical, typical social norms, typical independence, typical things.

(To David) I'm boring you. Am I boring you? [Laughs] and the other program became sort of like a school book program. Here's the curriculum. I'm going to send the curriculum home. The parents can do this curriculum at home, and it's very separate, and what the professionals said as these research professionals as they reviewed it is that the parents in the one school room, then, started keeping the children like children, that one of the aspects of it was this sort of age thing, you know, when you got a label as an age, now let's keep treating you like you are that age, and so they were hugging the children and kissing the children and patting the children as if they were infants, and one of the differences in the other school is they were sort of trying to figure out what is age-appropriate behavior, and how do we operate with age-appropriate behavior, so the little kids were getting little kid stuff, and the bigger kids were getting teenage kinds of things. So how do we do that. So, you know, some of the results of the professionals were that one classroom, the parents' classroom, age-appropriate, hands-on, parents highly involve, highly engaged and everybody sort of learning from each other. in the traditional classroom, rigid curriculum, levels of abstraction in the course material, age-inappropriate behavior, in the non-traditional classroom, the parents were figuring out, how do we break things down into steps, so if you have to button your coat, you know, put the coat on fine put your arms through the sleeves, step by step by step by step, you know, pull the coat over, close the coat, button the coat, and so the parents were breaking all the tasks down into step by step to see where the individual child was having difficulty and to be able to help them through the difficulty but not let the difficulty become a barrier to the task, right? Traditional classroom end goals without breaking things down, no consistency in breaking them down and sort of sporadic attention on each of the children, and so, and it's one of the battles that we have in today's classrooms. Should there be this one on one? Do you have one on one, at what point, and how much one on one do you need, vs. one teacher to a bunch of students, how do you manage that, because there isn't the money to do all of that one on one, and the parents' answer was that's OK, have a teacher, and have a teacher show us, and and we'll come, and we'll spend some hours, and we will supplement the classroom. You can tell I have a preference of which classroom.

Also, I have to tell you, it was very cool to be hanging out at the boys club. I was a girl. It was great. You know, this was the '60s. Everything was kept separated in the '60s.

17:31:41:02

Lisa: So, I mentioned earlier, that your mom was doing this year's before the Right to Education case. In fact, in the 1970s, she testified before Congress. I don't know if you both remember that, urging them to pass legislation guaranteeing that not only local kids, but kids across the country would have access to education. So, why do you think your mom was so far ahead of all the advocates, and all the other parents' organizations?

Kate: (To David) Good Job. Thank you. Good Job.

17:32:32:10

Lisa: So, why do you think your mom was so far ahead of her time on the right to education?

Kate: Um, you know, I think part of it is that she had so many kids, so you know, she saw the whole spectrum, right, of all the kids, like all these kids are going to school, right? And she also had the unique difference of the age difference between David and Walter, and so she had always said that Walter showed her the way with David. So, I think a lot of parents that I've met, they can see where their child is at this moment but have difficulty seeing that future for them, and so they're sort of dealing with the moment. Her perspective was, though, that she got to see Walter, and she could already see where Walter was headed, and that there were no opportunities, and so knee knew that she had to fight for David to be able to able to get those opportunities, and so I think it's a really unique attribute.

(To David) The age difference between you and Walter became the solution for the two of you, because Mommy could see the difference, and wanted your future to be different than the future that Walter would have. Most parents don't have that perspective, because they don't have that age perspective.

17:34:06:05

Lisa: Thank you. In '72, PARC, the Pennsylvania Association for Retarded Children as it was known then, successfully brought the Right to Education case, and Pennsylvania had 12 months to find and serve children with disabilities who hadn't been served or had been underserved by the education system. I believe Walter, David, your brother Walter was maybe too old at this pointing to to public school; that correct? Kate: He still was in Longfellow.

17:34:06:04

Lisa: Oh, he still was in Longfellow, so I take that back. Let me ask, then, if with the passing of the Right to Education if David and Walter were able to join their neighborhood public school.

Kate: Yeah, that was actually it was part of the many battles in the public school. It was one of the many battles that Mommy had was the switch-over, the program, the original program was in Longfellow. One of the things that was happening at this time in the country was racial integration was happening concurrently, and so the reason that the pilot program happened in Longfellow was that Longfellow was a school that was emptying out. There were hardly any kids in it. There were hardly any classrooms in it, and so there was room for this classroom.

And so one of the things that happened is they wanted to as the Right to Education was happening, busing started happening, and so they wanted to empty Longfellow the rest of the way out so that they could bus kids into Longfellow. Now, so, this was a program, the program for, one, what was called the multiply-handicapped children, the program for the multiply- handicapped children. The aspect of it was a community program, and all these parents came to it, and um, you know, we could walk there. It was a block, but part of this, part of what was changing was the new program and the right to education, the classroom was moved to Sullivan, which was where the rest of the neighborhood and everybody was going for elementary school, and so the Longfellow program was being shut down and being move to Sullivan, so sort of tied up in the middle of this was, is the Longfellow program appropriate anyway, and the Longfellow program was going to get moved to Sullivan, so both of those things were happening at the same time.

So, anyway with the Right to Education, she had pulled David and Walter out of the program. They had the situation at the boys club. There was a court case about why did she pull them out of this school, and she was getting sued, and she was suing the school system. They were yelling at her because the kids should be in school because we won the Right to Education, so why weren't they in school, and she was saying, what is an education? And so, that really was the pivotal time where PARC was about the right to education, but the real question was what is education? What's the definition of education? Does everybody really have a right to learn, and do we really expect for every single person that they have a capacity to grow and to become something and to add value, and that was really sort of more of the value pivot point for PARC rather than the very first origin of PARC.


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