JULIE JOHNSON:  This is a recording of the Women Who Dared project for the Jewish Women's Archive on March 4, 2005, with Sue Wolf-Fordham.  Interviewer Julie Johnson.

JJ:  So we were talking about your work and –

SUE WOLF-FORDHAM:  So at the same time. 

JJ:  – the Kehillah Project.

SWF:  – [At the time the Kehillah project]  was happening,  I was getting interested in the Internet and went to some kind of seminar where they taught you how to use the Internet.  I had convinced my husband we’re getting a computer, and I thought it would help with my research with my daughter [who has a disability].  My mother, again, for years, had been this Soviet Jewry activist.  I guess she must have started talking about the Kehillah Projects, and the Boston Jewish community was becoming affiliated with the Jewish community of Dnepropetrovsk.  I was so used to this at this point it wasn't a conscious influence.  I remember we heard there were children in need there, and my husband and I must have sent a swing and some toys [and] a small box of stuff with my mother.  She was always bringing stuff.  Actually, she's always schlepping stuff with her wherever she goes on these missions.  And we just never thought about it, and I helped her pack stuff a million times.  And we started sort of talking about kids with disabilities in the Ukraine.  Now, in my version of the story, I say that we talked about it, and she said to me, "You put your money where your mouth is."  In her version of the story, she says we were talking, and I said to her, "You have a grandchild with a disability" – shaking my finger – "and why aren't you doing something about children with disabilities in Ukraine?"  I think the correct story is that it was a combination of those two discussions, and I hope she did tell you that when she spoke to you.

JJ:  Yeah, yeah.

SWF:  And we always sort of laugh that we had these two different views of it.  We developed this idea that – because, at this point, I had done a little Internet research, and I found there was very little, except to say children who had been victims of Chernobyl were having all kinds of health problems.  There was very little about disabilities versus health problems, and we later learned the reasons for that.  I had learned, because of my daughter, to make simple adaptive equipment – adaptive spoon, adaptive cup, simple toys, and games, which I had had to teach myself to make for my own daughter.  And I thought we'll get a box of stuff; we'll get it together, and she'll bring it on one of her trips because I certainly was not going to go anywhere that far away from my kids under such really crummy conditions.  We thought maybe we'll get a project together that would be bringing small, adaptive equipment.  I think she even did a test trip.  She went to Dnepropetrovsk with some kind of tape recorder I had adapted for some blind kid they knew in the community.  Then we were sort of debating how to proceed about this, and my mother had been talking to the JCRC [Jewish Community Relations Council], and they were interested, but it was in an amorphous stage.  Someone named Judy Patkin – did she mention her? – at Action for Post-Soviet Jewry –

JJ:  I don't think so.

SWF:  – she's the Director of Action for Post-Soviet Jewry.  She must have heard about our idea, and my mother was talking at a the National Conference, and she was on the board of the National Conference, so we were trying to get information and figure out how this [our potential project] would look.  But Judy Patkin called and said, "In a half hour, I have someone getting off the plane from Dniprodzerzhynsk, which is next to Dnepropetrovsk.  She's a social worker.  She might know something about people with disabilities.  I think this was after my mother had gone to Dnep and done a little talking.  We made a rudimentary video.  I mean, it was very rudimentary stuff.  She said, "Come over."  Judy's office was in Waltham.  "Maybe meet her, talk to her.”  So I had nothing to do that day.  I don't know even what I did with the kids.  We must have had a babysitter because the kids were little.  I put a bunch of things in a laundry basket, went to my mom's, got my mom, off we went.  This poor lady gets off the plane, goes to Action for Post-Soviet Jewry.  She's never been out of the newly independent Soviet block.  They hand her a slice of pizza.  The first time she ever had pizza.  Put her down in the chair, and they say, (claps crisply) "Talk" to us.  And this lady – who is this lady?  [laughter] And what she must have thought of us.  She has since moved to the United States, and she is a wonderful person.  Ironically, her daughter was our first translator the first time we brought a person from Dnepropetrovsk here who was interested in children with disabilities.  So anyway, we start talking, and I'm holding up little adaptive cups, adaptive spoons – and this is where the mother-daughter thing comes in.  The lady didn't seem interested.  My mother was saying, "Come on, tell her.  Tell her more.  Tell her more."  And that's something you can have in a project when you have a mother and a daughter that you don't have in other projects.  And I was saying, "All right, Mom, but she doesn't seem interested."  I'm going on and on and just giving her this spiel, not knowing if it even sunk in, and the translator is translating, and we're all eating the pizza, and I'm thinking, this is quite the scene.  Then this lady starts saying there are no people with disabilities in Ukraine.  Now what we later learned was this was the official Communist line.  Under Communism, all children are happy and healthy; thus, because Communism is wonderful, we don't have any kids with disabilities because then they wouldn't be good Communists.  And that was sort of the official propaganda, which certainly continued after independence.  So she's telling us this, and I'm now saying, "Gee, Mom, I better stop.  She doesn't want to hear this."  "Come on, Sue.  Tell her more."  And that's, again, mother-daughter interaction that you can have.  And my saying, "Okay, Mom."  So the next thing we know, this lady bursts into tears, grabs the stuff we're showing her, hugs it to her chest, especially the cups and the spoon.  Sobbing.  Saying, "I didn't know these things existed."  I turned to my mother and said, "Well, I guess that's our needs assessment."

JJ:  Yeah.

SWF:  It was at that moment that we knew we were onto something and that it began.  Then, working with the National Conference and the JCRC, everything, a little bit, started to fall into place, although the very first year, I think we self-funded.  And then we decided, and I didn't want to do this, that we better go to Dnepropetrovsk.  She, of course, loved going.  I didn't want to leave my children.  My daughter has a severe disability.  It is a hardship on my husband every time I leave for an extended period.  In those days, you couldn't call home from the Ukraine every day.  The conditions were hard.  Why should I go to Europe for the first time since college and go to Dnepropetrovsk?  But to prepare for the trip, I thought, we need more in terms of needs.  And again, my mother was talking to people in the Jewish community.  I don't mean to downplay her role; I'm just assuming she told you about her role.  She was more Jewish community and politics and international, and I was more disabilities/adaptive equipment.  

JJ:  Right, right.

SWF:  I was never going to be a joiner.  I just didn't want that international relations stuff.

JJ:  A lot of international –

SWF:  Again, I've been proved wrong, but I had had a professor in law school – I had a class in law school that influenced me tremendously, a public affairs class, which was about companies and social responsibility and lobbying and things that I was very interested in.  The professor said, "If you want to get something done in a corporation, you've got to go to the president.  Pick up the phone, find the president's assistant, and call them."  And that has stuck in my head to this day.  So the UN [United Nations] had just opened an office in Kyiv.  And, on the theory that the UN would be simply delighted to hear from me – some strange woman in Boston with an idea about a project for their country, I thought, "I've got the Internet.  I'll send an email to the head of the UN office in Kyiv detailing our fledgling ideas for a program and saying we needed their help and what help could they give us.  Now, this was very idealistic, which I also am, and very naïve, which, unfortunately, I was at that point.  Lo and behold, my professor was right.  I got an immediate response from this guy saying that he would put me in touch immediately with the medical director for the UN in Kyiv, who we did end up meeting, who was, in fact, extremely helpful in explaining some of this background to us.  We went on that first trip.  We had to bring our water.  We had to bring food.  We had to bring toilet paper.  I got on the plane from Austria to Dnepropetrovsk, and I looked at the plane, and it was this old plane, and I thought, "What am I doing?"  I wouldn't be able to call home, and I wouldn't be able to email.

JJ:  Yeah.  What year was this?

SWF:  The end of 1996.  So we get off the plane in Kyiv.  It's gray.  It's cold.  There is no heat.  The airport is primitive by current airport standards.  We walked down the stairs of the plane because they didn't even have jetways.  You landed in the middle of the airstrip, and you had to walk.  There were these soldiers with guns pointing at us.  My father had once been in the former Soviet Union, and he said to my mom, "This reminds me of Germany during the war.  I'm not coming back."  I looked at this, and I said, "Mom, Dad was right.  What the hell did you bring us here for?"  She said, "Be patient, be patient."  We got to customs.  There were hassles with customs.  We had all of these boxes of stuff.  Customs in those days – they didn't quite end the Communist system when Communism ended.  And luckily, we got through Customs, one, with a letter of introduction from Senator Kennedy's office, and two, my mother's passport picture was particularly unflattering, and the customs guy actually started laughing at it.  We started laughing, and he ended up waving us through with very little hassle as we all laughed at the picture.  He laughed, and he pointed, and we laughed, and we pointed at the picture.  

JJ:  She said you have a lot of funny stories.

SWF:  Yes, we have hysterical stories.  So then we get to the hotel, and I look at this place; it was so unsafe my mother didn't want me being in the lobby alone.  Now, again, this is a mother-daughter thing.  She thought she should be there to protect me.  I was already a grown woman, but somehow it was unsafe for me to be there alone.  There were armed guards in the lobby of the hotel, which was crummy.  I got to my room, and there were gouges in the walls.  And wires sticking out.  I joked to my mother that this is where all the wiretaps were.  There were ladies who wanted to take your key and your passport when you left the room.  Again, from the old spying days.  My room didn't have curtains, and it was on a lower floor, and it was so close to a department store across the street that people in the store – and there was close to no merchandise in the store – could see me.  I could wave at them.  They could wave at me.  I had a phone made out of a plastic that we stopped using in the United States before I was born.  And I thought I had gone to another planet.  I kept saying, "Why are we here?"  We had, mostly, no heat.  Sometimes only cold water showers.  And I thought, "What have I done?"  Now, oddly, as I was having misgivings before the trip, my husband sat me down, and I was really panicking before the trip, and he said, "I think this could be something big.  I really have a good feeling about this.  I think you should go."  We also weren't allowed to go out by ourselves.  The Jewish community gave us a guy who was our "minder," really, to protect us.  We couldn't walk two feet without this guy.  The whole experience – I couldn't eat most of the food.  Many of the restaurants didn't have food.  I began losing weight the first week.  We get to the UN to meet with this contact.  There's no heat at the UN office.  We're sitting in the UN office in our coats and our hats, and I'm thinking, "What did you get yourself into?"  There's a woman in the meeting who holds up a photo – and we're meeting with the medical director – but she called in this other woman whose name is (Leah?).  She holds up a photo.  I looked at the photo, and I recognized an older version of my daughter.  I could tell by the way the child was standing.  In the US, my daughter's type of disability is so rare that I had never seen another child with her type of disability.  And here it was in Ukraine.  And I said to myself, "Well, now I know why I'm here."  That person (Leah?) again became an important cog in the wheel.  We get to Dnepropetrovsk after a six- or eight-hour bus ride from hell.  It was just funny story after funny story.  Conditions so bad you had to laugh, or you would cry.  I think the black humor we have is because conditions are so bad.  We met with the Rabbi, who was trying very, very hard, but it was obvious there was a long way to go.  He listened to us, I think, and he told me last year that he didn't fully understand us.  He understood we were concerned.  He understood we were caring, but this had not been an area he had particularly thought about.  He did an amazingly brilliant thing.  He is a brilliant community leader.  He sent us to speak to the head of this Jewish teacher training college, which was brand new.  The building was so crummy that if you touched the walls, the plaster would come off in your hand.  They had a bunch of girls, some of whom had never been in school before.  They were trying to teach secular subjects, Jewish subjects.  It was an amazing operation.  Although I'm talking about the crumminess that was then, the physical condition of the Ukraine.  The spirit of the people, especially the Jewish community, was abundant from the beginning.  We did a little presentation for the girls.  Now, under the Ukrainian system, if your teacher tells you to sit still for three hours and don't move, you do that.  Unlike American students.  They were teaching fifteen- to nineteen-year-old girls, many of whom [were] from the hinterlands of Ukraine.  Some of whom were Jewish.  Varying levels of education.  We had to do it all through a translator.  We gave a talk.  I brought a Barbie in a wheelchair to illustrate some points.  I had things for them to look at because I didn't want them to be bored.  But the teacher had ordered them to sit.  Maybe I spoke for about an hour.  Then, the director of the program (Karl?), another visionary, said to us, "I think we have to do this."  Just like that.  "We have to get involved in what you're calling special education."  They didn't even have a word in Russian that corresponds to what we call special education.  Quietly, he said that.  He then got up and, without notes, spoke from the heart to these girls for two hours.  And said to them, "We're going to do this.  We're somehow going to get involved.  We're somehow going to teach this to our students."  He had seen a bootleg TV or video show from Hungary where they had talked about people with disabilities, and he had been moved by it.  He had at that time, (Tamara Olshanitskaya), the woman who is today the head of the college, was the equivalent of the Dean of Students, handling student life but not academics.  He had in mind to get her involved.  She had a high school daughter whose name is Inna, who today is a business student getting her MBA [Master of Business Administration] at MIT [Massachusetts Institute of Technology].  Inna liked English.  She was learning English.  And the truth is there were terribly few translators and almost no good translators in the city.  After the Soviets left, they made a brain drain.  They sort of took a lot of the intelligentsia and a lot of the talent that the new country would need with them.  So Inna was going to be our translator.  So here's this high school girl who is learning English.  She really was the best we could get.

JJ:  Yeah.

SWF:  And so Karl, who had been a chemist and a chemistry teacher, or physicist and a physics teacher in high school before he became director of Beit Chana, Inna, who was a child, Tamara who was a chemistry teacher and a chemist and then came over to be sort of dean of students in this new school; my mother; and me – and it began to coalesce somehow.  It's almost hard to describe.  Then the JCRC, which had been involved from that first trip, said, “You have to speak to Sy Friedland.”  In fact, someone from the JCRC said, "Have lunch with this man."  I didn't even know who he was.  I knew he was affiliated with JF&CS [Jewish Family & Children's Service].  I didn't realize he was the executive director, although part way through lunch, I said to myself, "Gee, this guy knows a lot.  I wonder if he's high up in the organization." [laughter]

JJ:  Yeah. [laughter]

SWF:  He became involved.  I showed him pictures.  It was very rudimentary.  And he said, “I have a friend who is a professor at Tufts.  He's a former student of mine.  We're going to go and meet with him.  You're going to show him the pictures.”  So I went and did this whole talk again, not realizing that Dr. Don Wertlieb was quite a prestigious psychologist and professor.  He went, "Yeah, okay.  I'm in."  

JJ:  Wow.

SWF:  I'm condensing a number of years here, but I'm trying to show you how the main players fit in.  Then I was asked to – we knew we needed a pediatrician.  This was an unusual collection of individuals with an unusual collection of talents.  My mother was gathering a committee here.  Also a very eclectic group.  We were going to bring someone from Ukraine here because to explain disabilities and special needs education to someone from a country where, basically, it didn't exist, where medical care was forty years [old], where there was such prejudice against people with disabilities.  Where children were institutionalized, it didn't seem like there was anything good in the old system.  Our plan was scrap it and just invent out of our own heads something new.  I was asked to speak to this congregation.  I am very nervous about public speaking.  I thought, "Oh, it's for a good cause.  I'll go."  On a Friday night.  So there was real pressure – speak at services.  So I'm doing my own thing.  I'm bringing the pictures.  I have the photos.  By now, I've developed a little thing.  I'm realizing that when someone sends me to meet someone, this is turning out to be good.

JJ:  Yeah.

SWF:  Afterwards, this man who was very religious, with a beard, came up to me and said to me, "Do you ever think about a doctor?"  I said, "You know, it's the craziest thing we're looking for a pediatrician."  He said, "Okay, that's me."  And that was Dr. Stephan Glicken.  I said, “Wow.”  He was so religious he didn't carry his business cards on Friday.  I had to call a friend of mine on Sunday who was a friend of his to get his contact information.  Some of this happened actually before our first trip, so I'm combining some stories.  So we began. Karl, the head of Beit Chana, the visionary, unbeknownst to us, was planning a move to the US.  People are very quiet about that.  We invited him to come to Boston.  He declined, and he sent Tamara, the woman who today is the head of Beit Chana?, in his stead.  We planned a two week – my mother may have mentioned this –

JJ:  No.

SWF:  – extravaganza of learning.  

JJ:  Oh, yeah.  Yes.  Yes.

SWF:  Where this poor woman was schlepped hither and yon.  Twelve hours a day.  Well, they do the same to us there.  When you're there, you're going, going, going.  So we must have figured if a little learning is good, ten times the learning can only be better.  And this was “Welcome to Special Needs 101 Lady Who Has Never Been in the US.”  I don't know if she'd been out of the former Soviet Union – who doesn't speak the language.  But if Karl? said she was the right woman for the job, by Jiminy, Karl, was right.  There was at this time a Rabbi involved at Beit Chana, the teacher's college, who had lived in the US, and he was pushing Tamara to go.  Morning, noon, and night we did disabilities in every conceivable way.  Any group, Jewish or non-Jewish, that was available to speak to her, we had them speaking.  She was taking notes constantly.  We had professors at Tufts lecturing her hours on end.  Now, luckily, while we are disparate personalities in this group, we all must have something in common because she didn't think that was unusual.  And we did not think that was unusual.  In retrospect, that was pretty darn unusual.  I took her to so many adaptive bathrooms at Sturbridge Village [historic village museum in Massachusetts] that she finally pulled me aside and said, "Don't show me another adaptive bathroom."  We took her on adaptive vans.  She learned about individualized education plans and special ed laws.  She met with parents.  She met with educators.  Preschool teachers.  She visited inclusive schools.  Social service agencies.  We crammed four years of a special ed degree into two weeks.  We went to a substantially separate school which was not the model that we were all envisioning.  A vision between our committee, these particular consultants I've mentioned – my mother, I, Tamara – a vision was developing that week.  A collective vision.  And, finally, I was driving around.  She was so tired one day she fell asleep in the car.  But I was driving around, and she said, "So you have this kind of idea for a kind of a place, a center.”  I said, "Yeah."  And she said, "So show me the one here."  And I looked at her and said, "Well, there isn't one.  We've all just made this up out of our heads.  This vision is made up.  There is no one model here."  She looked at me, and she laughed and laughed and said, "So your idea is for me to start this?"  And I said, "Yep."  And she said, "So you have very little money.  You're giving me sixteen boxes …".  We'd been, all of us, collecting a thousand different kinds of materials.  So she said, "You're sending me home with these fifteen to sixteen boxes of materials, a tiny budget, an idea we've never tried in the Ukraine, and you'd like me to start it."  And I said, "Yeah, that's basically the game plan."  We both kind of laughed and our translator, who was the daughter of that first woman [who I had spoken with at Action for Post Soviet Jewry], laughed also.  She's now a physical therapy student, or she was at the time, in the United States.  So Tamara looked at me and said, "Okay."  And just like that, “Okay.” [snaps fingers]

JJ:  This was Tamara that was here for the two weeks that is now the head of it.

SWF:  So then we went back, and I said to the group, “She's on board.”  And again, during this week, we had lots of meetings and the volunteers and the consultants.  Again, I'm focusing on me because I assume my mother focused on her role.  I don't want to minimize the critical importance of all of the other people because it's not just about my mother and me.  I want to be really clear about that.  And so she, basically, said just a simple, "Okay."  And almost a year to that day, the Resource Center opened.  And, truly, without her, without Mayer Stambler, without Inna, without Don, without Steve, without Sy, without our committee, this wouldn't have happened.  So we're getting this award, and it's very wonderful, but this really is a group effort.  So, we all just kept laughing about this because here's this lady we're schlepping around, and she's got this idea.  We had to invent language.  We had to invent the word we were going to use for special education, which, internationally, is called special needs education.  We picked Resource Center because it has no meaning in Russian.  So we wouldn't get in trouble with the authorities.  There was some big concern about that.  At the end of that visit, we had a collective vision, and she came home, and she and Mayer Stambler made it a reality.  There were some parents there who we met who early on became involved.  One mother in particular, who I gave a book to, that I had gotten from the State Department, again, using the theory of that professor, worked with the UN.  I figured I'd chat with the State Department.  And actually, that also worked, and the State Department donated a book.  I called lots of other places because we had close to no budget, so we were getting donated materials, especially books.  There was very little written in Russian at the time.  So fast forward to today.  Today the Resource Center is a school for kids with moderate to severe special needs.  There are about thirty-five kids.  It's an after-school tutoring program for kids who can go to school in what we would call a mainstream environment.  It's a family support program for the families.  It's a medical consultation program.  It is a teacher and student-teacher training program par excellence.  It really started from this vision, and we knew Inna would translate her mother's letters, and so Inna and I began a correspondence.  Because she was a teenager, I thought, "Well, how do you...?” Her English was okay, but it wasn't [at] the college level you needed.  There weren't a lot of English teachers in Ukraine, so she quickly outstripped what her high school and her college offered, so I sent her Glamour, Mademoiselle, Seventeen, girls’ magazines because she liked that sort of stuff.  I figured maybe she'll read them, she’ll learn English, and email with me.  And that's how she completed her English education.  And now, today, as I say, is another success story of the project.  She is now a graduate student with very good English, a wonderful sense of style and fashion, and great knowledge of slang words.  Today, Tamara is running the school that began as a school for fifteen to nineteen-year-old really lost girls or girls on the streets, [and] is today a high school and college for young women in Ukraine.  The Resource Center is thriving.  Our newest part, the families support piece – thanks in part to the generosity of CJB Women's Division is going like gangbusters.  That was the fastest, easiest, and, some may say, the best piece.  And here we are with the program.  We're still occasionally in touch with the people at the UN and the other people that we've met along the way.  Last year, we had the dedication of our recently rehabbed space.  This is a project of the Jewish Family and Children Service, and, again, this is absolutely not to minimize the role that that institution’s support has been.  So that's one project.  Anyway, is that enough about Dnepropetrovsk?

JJ:  Oh, yeah.  Yeah.  Yeah.  I just want to check the time.

SWF:  I was sort of sitting at home minding my own business after this whole Dnepropetrovsk project had started.  When CJP called me a number of years ago and invited me to begin a project in collaboration with the Department of Mental Retardation here in Boston, it was, I later learned, because Nancy Kaufman of JCRC and Sy Friedland of JF&CS had recommended that I might be a good person to begin to staff this fledgling program.  This is only about four years old.  That became what is today Yesodot, which is the Boston Jewish communities' family support program for Jewish families who have younger adult children with disabilities.  We serve a hundred and sixty families in thirty-five cities and towns in the greater Boston area and have a variety of programs.  We have parent education workshops.  We have family social and recreational programs.  We run an assistive technology conference.  We have a sibling support program.  We work with the Jewish community to foster participation and inclusion in community events.  It is family-centered, and it's also family-governed.  So there is a group of families that run it.  I am now the person who runs the program.  I have two staff who work with me.  And that has had exponential growth, that program.  We have the only Jewish community handicap-accessible website in the Boston area.  We have a listserv; we have bi-weekly e-news that goes out to families.  All kinds of resources.

JJ:  So this is what you put your time into full-time?

SWF:  Right.  This is my employment.  Because of this work in Dnepropetrovsk those people thought of me.  It did not begin as full-time employment.  It began as a small part-time – what did Sy tell me, "Well, you'll gather some friends together, you'll meet other families, you'll get together.  You'll get together a few times, maybe have a speaker."  And look where we are today.  And I'm busy getting grants and doing development work for that program.  But the skills I learned on the Dnepropetrovsk project very much carry over.  When I was originally asked to start Yesodot, I said, "I'll do it" because I could see the future for my daughter in it.    


JJ:  Can you just spell that?

SWF:  Y-E-S-O-D-O-T.  When we're done, I'll give you the URL and all of that stuff, and I'll print some stuff out for you.  I said two things: my own family has felt so rejected by our own community because of my child's disability that I don't have it in me to reject any family.  So any family that wants to be part of Yesodot will be.  We will be inclusive.

JJ:  Meaning Jewish or not?  Or no.

SWF:  I knew this was a Jewish community program, including inter-faith families.  Meaning, if they wanted to start with five families but six families were interested, I was going to take – that's how we got one-sixty.  My own family had felt so rejected, and it’s so painful to be rejected by your own – to feel rejected by your own community or to perceive that you're being rejected.  At the time of Yesodot, there were far fewer Jewish community supports in Boston than there are today.  There has been an explosion, a wonderful explosion of programs in recent years.  But I had learned that from Dnepropetrovsk.  I knew from my own feeling, but I had seen families feel such isolation and rejection that I knew they would feel the same in Boston.  I knew my own family felt the same, that I couldn't turn anyone away.  The other lesson from Dnepropetrovsk was I said, "I'm going to all aspects of the Jewish community.  I'm going to go to the Hasidic community.  I’m going to go –  on the transcript, you should say, "to the Orthodox, Conservative, and Reform, including traditional Orthodox community.  To unaffiliated obviously – to inter-faith families as well.”  Because I had seen the beauty of that system in Dnepropetrovsk where, and this is much bigger than the special needs program, the traditional Orthodox, modern Orthodox, and Reform, which is called something different there, communities all work beautifully together.  And I had seen some instances here of some tensions between those communities, and I thought in Yesodot, we're going to welcome everybody.  And those were the only two, not pre-conditions, but the only two ideas that I started out with Yesodot.  I then spent a year gathering families because just because I’m Jewish and have a family with a child with a disability doesn't mean I know everybody who is Jewish or know anybody.

JJ:  But what a great thing to gather that community and have that –

SWF:  And we started immediately with about thirty to forty families, and it has just grown.  Last year, we had a New England Regional Assistive Technology conference that was covered in the press.  Again, this is not to minimize the role of the Yesodot Executive Committee or CJP's support or the support of Jewish Vocational Service – very strong support because Yesodot, the parents, picked to affiliate with Jewish Vocational Service.  JVS is all about empowerment and breaking down barriers, and that was the feeling that the initial founding group of parents wanted.  Also, not to minimize the role, especially in the beginning, of some visionary people at the Department of Mental Retardation.  Again, the program coalesced somehow, and it grew to quite a formidable program today, and I'm equally proud of my involvement in both programs.  

JJ:  What would you say your impact has been in the work that you do, and you can decide what you want to talk about on a global scale?  And obviously, Dnepropetrovsk puts it into the international community.

SWF:  I'm not sure what you mean.  Do you mean, what is my mark on the world?  

JJ:  Yeah.  I know it's a big question.

SWF:  That's a big question.  I guess I've made a number of small marks on the world.  I’m very proud of them.  I think, on the Dnepropetrovsk end, I have worked with others to create a Jewish community, special education, and disability support system that is unique in Ukraine.  I think we have impacted education or special education in the city of Dnepropetrovsk.  Obviously, I've been part of the re-birth of a Jewish community, and of course, I've been a tiny piece of that, but this is really about Klal Yisrael.  We're all “Kol Yisrael Aravim Zeh la’Zeh.”  We're all part of the Jewish community, and we're all mutually responsible for each other.  And this group of kids with special needs and their parents is really a part of the Jewish community of Dnepropetrovsk.  So I've impacted that.  In a bigger sense, Ukraine is a developing democracy, and so I've had an impact on civil society, and maybe that's what I'm proudest of.  Although, of course, it's a small, tiny impact, and there are many people making bigger impacts.  But I've impacted in a small way a group of people's attitudes about people with disabilities.  I've impacted people with disabilities and their families.  And in some ways, some of those things are similar for Yesodot.  I've also been active on various Jewish community committees related to people with disabilities.  I hope that I have, in some small way, impacted the Boston Jewish communities' disabilities programs and also helped with disabilities awareness.  And again, I don't delude myself; I'm a small piece of many people's work, but Yesodot has definitely made its mark, and I like to hope that I personally have made a mark.  Certainly, when I'm long gone, the Internet will have information about me, which maybe a hundred years from now, some other woman will see if, indeed, we have the Internet.  One hundred years from now, I suppose [inaudible] another system.  [laughter]

JJ:  Who knows what we'll have?  [laughter] I want to talk about the "woman of peace" [inaudible] in all of this.  How has being a woman impacted your work?

SWF:  I think it impacts my life.  I can't separate out how being a woman or the women's movement has impacted my work separate from my life.  I went to a women's college, as my mother did.  I certainly think of myself as a feminist.  I was given the impression by my parents and my grandparents that there was truly nothing that I could not do.  I think the women's movement and the feeling of women and empowerment fed into [inaudible], so, to me, failure wasn't an option, wasn't going to happen.  I wasn't afraid to plow ahead.  I do think the position of women in contemporary Ukraine is a little bit different than women in the United States.  I have to be sensitive when I’m there to the cultural differences.  But I think, there, too, I thought it would be okay to speak my mind, and eventually, someone would listen.  And maybe that's the same thing in Boston.  I thought it was okay to speak my mind, and eventually, someone might listen, or eventually, I might have an impact.  I can't say, other than The Feminine Mystique, which I read in college, that there was some book that came out of the women's movement.  By the time I read The Feminine Mystique, it was history.  It just didn't dawn on me that I couldn't be empowered as a woman, and I think, both in the international arena and in the domestic arena, there are certain skills, maybe, that women have naturally.  Certainly, being a mother has impacted my work that can help you internationally.

JJ:  How has being a mother impacted your work?

SWF:  Well, obviously, I have a child with a disability, but we learn a lot of skills as mothers.  Skills about patience, about multi-tasking, and many is the time I've been on an important conference call while holding, feeding, and maybe even changing some small child all at the same time and maybe even using the computer too.  And I think that's a skill that mothers have whether they identify themselves as feminist or whether they don't.  I think you develop a kind of a sense of humor when you deal with disability issues in your family.  Particularly mothers, who tend to be the primary caregivers, develop a sense of humor as a coping mechanism, and that stands in very good stead when you're in some place with limited food, limited hot water, and bad conditions and customs that we're not used to.  It stands you in good stead when you're dealing with issues of cultural differences.  Although Dnepropetrovsk is a wonderful city today and does not have those same bad conditions, there are always cultural differences.  But I felt very empowered on the Boston side by the Boston Jewish community.  There are certainly lots of women role models who are strong women leaders in the Jewish community, not just in my family.  It didn't occur to me – There have been three times in my life that something was so right that it was just going to happen.  One was the Dnepropetrovsk project – I can't believe I'm tearing up about this – one was Yesodot, and one was related to my daughter.  And it just felt – they're going to happen.  Whether I felt that because I'm a woman [or] because I'm an idealist, I couldn't tell you.  Well, there have been naysayers on all three fronts, and I felt, well, they're wrong.  They'll learn.  I'll persuade them eventually because I'm a fairly persuasive person, and I have a huge amount of perseverance.  And I just thought, “Well, it will be.  It will just happen.”


JJ:  Yeah.  Yeah.  

SWF:  Oh, and I have mascara on too.  

JJ:  [laughter]

SWF:  This is bad.  I would have to say that I was so certain of the "rightness" of these things from a social justice point of view.  My mother, in fact, on the Dnep front, had said that there will be people who say this project won't work.  And there will be naysayers.  I said to her something like, "But we won't pay attention to them."  And I really felt that.  Again, that was a little bit idealistic and naive, but the same with Yesodot.  If there have been stumbling blocks, I've just thought, "They're wrong."  They're just not seeing the picture the way they should be seeing the picture.  And if I figure out another way to explain or do something different, I can get them to see the picture.  And similarly, with certain things related to my daughter.  I just, as I say, failure was not an option.

JJ:  You mentioned role models a minute ago, and that was another question.  And I sort of want to wrap up with that.  Can you talk a little about role models?

SWF:  I would say, certainly, both of my parents.  My grandmother has been a role model, although each of these people approached Jewish community involvement in very different ways.  My grandmother used to tell me stories about my great-grandmother.  So although I didn't know her, I'm named for her, and I would include her.  I would say my daughter too.  Anyone outside of that group...  The professor – who was not a woman role model [laughter] – he was a male professor.  That's okay.

JJ:  [laughter]

SWF:  That public affairs class really struck a chord with me. 

JJ:  How was he your role model?

SWF:  Maybe he wasn't a role model.  The class was an influence, I would say.  I don't know if I sort of look at people that way.  Certainly, when I've had the privilege of meeting strong, interesting, independent women, I feel I can learn a lot from them.  I was very worried I wouldn't know how to run a program when I was beginning Yesodot.  I didn't know how you learn to run a program, so I thought, "Well, I'll go to meetings and observe certain Jewish community lay and professional leaders, and I'll note how they behave, what they say."  So I picked a number of people whose names I'm not going to share, and I used to go to meetings and watch them.  So I would say they are role models, although they did not know at the time.  I would look at everything – how did they run a meeting, how did they handle dissent, how did they make a point and disagree with it, how did they prepare reports that I learned are a necessary part.  Anything and everything that I could learn.  As we all know, Jewish communal life is a lot about going to meetings.  I would just pick these people and watch them and glean whatever I could because I didn't really have time to take that "How to Run a Program" class, which would be my ordinary inclination.  I'm going to wait until we're done.  I had certainly read a lot of books about it.  We have some wonderful, strong lay and professionals here, and I have been too shy to tell those people that I used to sit and watch you.

JJ:  Yeah.

SWF:  I learned thus and so from you, including at my own agency at JVS and many, many other agencies.  Since Yesodot was so successful, I guess I picked the right people to model myself on.  I, honestly, had run some small meetings, but this was getting group consensus, and this was getting families together.  This was learning about PR.  This was learning about Marketing.  

JJ:  Sure.  Everything.  

SWF:  This was learning about everything.  So I picked people who I thought were really good in those areas, and I just watched them.  Sometimes I would ask them questions.  In the beginning, there were a number of people with Yesodot that I would call and say, "I know this is a stupid question, but how do you do such and such?"  And staffers from, by the way, and lay people, all levels of leadership.  I mean, I had some pretty basic – how do you deal with a caterer? – questions for events to very complicated Jewish community politics.  

JJ:  Interesting.  That's pretty much it for my questions.  I wanted to know if there was anything that you wanted to add that we didn't talk about that you think would be important.  

SWF:  I want to make sure I mention the key people because I really need to thank them.  I think I mentioned Tamara, Karl, Inna, Rabbi Shmuel Kaminezki, Meyer, Steve, Don, Sy, the special needs committee – I mentioned JF&CS.  I mentioned JVS.  Well, you know you have to make sure you mention these people.  The Yesodot Executive Committee.  The parents have been so instrumental in taking Yesodot to where it is because it's my privilege to work with them.  Is there anyone else?  I think that's got to be it.  So that's it.  

JJ:  Okay.  So we'll stop there.

SWF:  Okay.  So do I need to show you stuff?

JJ:  So you want to talk about how the work that you are doing has been affected by your parenting.

SWF:  I sure do.  As we were saying before, being a parent is a full-time job.  Being a parent of a child with special needs is really two full-time jobs.  And it has been exceptionally challenging to be able to coordinate all of that, even though I have a very supportive husband.  And, in fact, this morning, we had an emergency related to my daughter.  Ten minutes before you arrived to speak to me, I was actually reviewing legal documents.  I said to my husband, "Got to go now.  I’m going to be interviewed.”  It was particularly in the early years when my children were younger, going to Dnepropetrovsk was the only time I left them for extended periods of time.  My son, when he was very little, a toddler, cried when I left.  The first year I could not call home every day, and sometimes it took three or four hours to call.  The minute we landed outside of the former Soviet Union – I still do this now – I head for the nearest toy store or, in my daughter's case, cool clothing store to buy them stuff.  Sometimes I brought them with me to meetings.  I think it's very good for them to see what I do.  

JJ:  How old are your children?

SWF:  Now my son is twelve, and my daughter is seventeen, so they can certainly understand when I leave.  But because of the severity of her disability and the fact that I'm her primary caregiver because my husband travels for work so much, it is very hard for her when I leave, very hard for my son, very hard for my husband.  And when I leave to go to Dnepropetrovsk, I leave maybe a twenty-page document where I've put all of the medical information for my daughter, a list of menus, therapy appointments for her, special ed, and some other information so that my husband has some stuff to work with.  Also, because I handle her special ed matters, when I leave overseas, he knows where all of the important stuff is, just in case.  But the single hardest challenge for me, personally, has been to be able to be a good mother who is there for my children and combine that with work and combine that with social activism.  I don't think there are good or easy solutions.  I am an incredible multi-tasker, and I think that's one, because I'm a mother and I've had to be, and two, because I'm a mother of a kid with special needs, and I've had to be, and three because I've just had to be.  It is very hard, and I know my kids have felt bad at times that I couldn't be there.  And I have certainly felt guilty that I could not be there for them.  On the other hand, from a personal point of view, when things are very challenging relating to my daughter, in particular, or when I've had a challenging day with both kids, the work is the fun part, and the social activism is the fun part, and it has so much meaning for me, personally, that I like to think I can share some of that meaning with my kids and that I can bring some of that meaning back to myself as a mother and can somehow input that into my mothering style.  It would be wrong for whoever might be listening to this in future years to think for a minute that it's very easy to combine all of these things with motherhood.  I would be very interested to know the stories of other women in the Jewish Women's Archive who found it easy because I would like to know what they know that I don't know.

JJ:  Well, it's amazing that you've been able to do what you've done.  

SWF:  It's an enormous juggling act. 

JJ:  It's not a small thing at all.

SWF:  This morning, before you came, I started working on a grant proposal.  The emergency came up related to my daughter.  I stopped that.  I had to interrupt a phone conference to stop that, then said to my husband you were minutes away, and I had to get myself composed.  Stop that, and you know very well while we've been here today, the phone has been ringing.  Someone from my office needs me, and I still have –

JJ:  Meeting, or something happening at your – 

SWF:  – so I still need to go back to the situation related to my daughter.  

JJ:  Right.  We'll stop right there.  

SWF:  That's all I have to say.

JJ:  Thanks.



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