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Leslie's Story In this clip, Leslie shares her passion for improving the quality of life for people with disabilities with a specific focus on young children and families. Scroll to Listen Leslie's Story 00:00 / 04:07 Leslie: So my passion has been improving the quality of life for people with disabilities with a particular focus on young children and families in my professional roles. When I was a teenager, I became interested in what we called at the time, “mental retardation”, today known as “cognitive impairment” or “developmental disabilities”. One of my first professional jobs was working in a grant funded program for visually impaired children and adults in a state institution. I was fortunate to be part of the movement in the 1970s to expose the abuses of these institutions and improve the conditions as a result of state and federal lawsuits with subsequent funding. Leslie: As we developed this new program and learned about the ravages of trauma and deprivation of institutional life on those children and adults, we understood that we needed to develop relationships with many other staff. Including those in direct care roles who had been there for generations and were wary of so many new young professionals. When I left that position a few years later, I knew I had learned a lot understood, that I had cultivated some good advocacy skills and appreciated that teamwork was a very powerful approach for effective change. Working in that state institution was a jarring and humbling experience. When I left the position, I was aware that many of the people I had worked with had no one to advocate for them. Leslie: I subsequently became a legal guardian for a woman, Diana. She had been born in the institution to her mother, another resident, who had been abused and suffered from syphilis. Subsequently, Diana was deaf limited vision in one eye. I was able to use my knowledge and relationships with staff to improve the quality of Diana's life, first in the institution, later in a group home. Leslie: In contrast to my first position at the institution, I was honored to be part of the progressive approach to including these children and their communities and supporting parents in providing for their child's needs. Service delivery was based on interdisciplinary teamwork, including parents, educators, nurses, social workers and speech occupational and physical therapists. Our philosophy had that parents and families were the most important members of that team and without their investment, we professionals would not succeed. I often tell the story of one of my first home visits with Bonnie, our team nurse. I remember sitting on the floor observing and interacting with the baby while Bonnie was sitting on the couch talking with the mother. Initially, I was annoyed that Bonnie wasn't assessing the child's needs, but quickly recognized that the conversation and relationship with the mother was the most important part of the visit. Leslie: When I moved into an administrative position in the public schools in the early 2000s, I worked collaboratively with guidance counselors in the high schools for students with disabilities could have more equal access to academics and extracurricular activities. In these public schools I thoroughly enjoyed my role as a team leader, facilitating meetings with parents and staff to create appropriate educational programs for each student. Leslie: The teamwork during my early intervention years and some relationships built at that time remained today. There have been several reunions over the years. We rallied over Zoom during the beginning of the pandemic to honor our colleague, Bonnie, who had passed away and had been a mentor for many of us. We recently had a physical reunion just a couple of months ago, about a dozen women, some from out of state. In addition to discussing everyone's current activities and families, the conversation always comes back to what great work we did in those early years and how important that teamwork was to our success.

< Back Caroline's Story Story Coming Soon! Scroll to listen 00:00 / 02:45 ​ Previous Next

< Back Charlie's Story Charlie recounts his rich experience traveling the world, and what he has learned from a lifetime of travel. He discusses the importance of how traveling helps us experience and help better understand other cultures, and how the individuals of these cultures shape his experiences. Scroll to listen 00:00 / 04:58 So to start out, I wanted to ask you to tell me about your travels throughout your life. Oh, totally I've been we've been very lucky with the chances to travel widely and a number of ways. We've traveled in Europe and Southeast Asia, Australia, New Zealand. And we traveled by boat and we travel by plane to some places that folks don't likely get to. So we've been very lucky. What what we started doing was bareboat chartering. And so we go down with friends and charter a boat for a week and poke around. And then we got to know some folks down there. And that led to a number of trips that took us to quiet little places that were very special. Yeah, what places did you end up visiting? Well, the some of the most interesting those days were in the Bahamas, which is not far from Florida. The Bahamas, or that's an earring because that a lifestyle is a very simple one and tied closely to the water. So people fish and people say, Oh, it's a much less complicated life.Each culture has its own defining food preferences, but so it becomes a question of which your pleasure artists are buried. So when you hurt Italy, I remember, we literally he took us out into the countryside of his place, and we'll probably had five or six courses. And in between each course, there was a different pasta dish. So oh, you could Oh, the pasta, trouble. And other cultures that fish can be defining, particularly in the islands where the fresher, fresh and wonderful. And and then of course, there's always the wind to wash it down with that makes that compliments of me also. It's all fun. Some of the places that we went to, as I say, we traveled around the world. And it's you, you realize when you travel that, wow, the architecture and the historic ask aspects are interesting. It's the people that make the difference. And so we'd always try and somehow connect with local folks wherever we were. And that made it especially nice. It was interesting because you can read forever about different cultures but until you talk to the people, while you're there isn't really illuminated and and so the people flesh out the sense you have the culture. So I know that it is it's clear that you've had a lot of time spent traveling and going throughout different places in the world. I definitely want to be able to travel more in my future and so I was curious if you had any advice for me for my future travels. The only advice I would give as a general advice that remember that traveling in my view is about the opportunity to meet people and focus on people lose much this the charm with the area and look food and all the reasons that it's appealing. Previous Next

< Back Stefanie's Story Stefanie discusses how COVID-19 affected her college experience as a student athlete. As well as the impact that quarantine had on her social life as an incoming college student. Scroll to listen 00:00 / 03:14 I think like as a person, I’ve grown a lot socially since I’ve been at college. I know COVID, when COVID happened and everybody was in quarantine it was like, I didn’t really see that many people. I only saw my family like my mom, my dad, and my sister and like occasionally my friends but like my parents were really stuck on no seeing anybody like during COVID. So I kind of like lost all my socialness, I guess, like all my abilities to be like social so I kind of had to relearn that when I came back here, or when I came to college. So I mean it was a struggle just getting into like this new world of like everything is so social. Especially, like in college, like everybody goes out and stuff like that, everybody goes to parties, and like everything is just super social with your friends. So, I just kind of had to learn how to change from COVID and not seeing anybody to seeing like hundreds of people a day like in my classes and stuff like that. So like last year, I was a freshman and well I graduated high school early, I came to college early. But it was still COVID and so we had all of our classes online, everybody was on Zoom so you weren’t really able to make friends and really my only friends were on my team. So then last year, it was the like first time that like everybody had been back into full classrooms and stuff like that and everybody is just trying to get into the flow of it again everybody’s like relearning everything that they lost like during COVID. And last year was especially difficult for me because I was trying to like extend and make like friends off the team and stuff like that and create like connections off of like my team or outside of my comfort zone but it was just super hard because it was everybody is so used to who they already talk to. But I think this year especially, I moved in with some people on the soccer team, so I’ve been able to like branch out and make connections with like them obviously. Just my social circle is just way bigger than it was last year and that’s something that I really struggled with last year. But this year it’s definitely a lot better and like I said before, it’s something that I work for, instead of, I was trying to let it come to me but it really wasn’t and it was hard because it was like when everybody gets in classes with like 200, like 400 people especially at UMass like when we have classes that big like nobody's really gonna talk, everybody is going to keep to themself. So like it was kind of like I had to teach myself how to go outside my comfort zone especially like I definitely had to go outside my comfort zone deciding to live with three girls I had never met before. I mean I was friends with one of their teammates and I have never meet the three girls that I live with before. It was definitely outside of my comfort zone. I was definitely scared just like what would happen. But, I’m definitely glad that I took the decision because now I’m just so happy with where I’m at socially so I’m definitely glad that I went outside my comfort zone, and I took that risk. I think like college and like being this age has also taught me how to reach out and make friends it’s not like everything is going to come to you and everything is going to find you, it’s like you need to go find like what you want. Previous Next

Caleigh's Story Caleigh reflects on the importance of becoming a role model for her five-year-old niece, Natalie. Being there for her as she grows up is something extremely important to Caleigh. Scroll to Listen Caleigh's Story 00:00 / 02:37 Caleigh: I just love stories in general anyways because it makes people who maybe would have never interacted realize their shared humanities. I just want say a story that I heard in class—It was a story in class about a young man who welcomed a little brother into his world, and he realized that this world was no longer about him and he wasn’t just a big brother, he was a role a model. Everything he accomplished and everything he strived for wasn’t only for himself but to set a good example for his brother.​ When I read that story in class it made me think of my five-year-old niece, Natalie, and we are very close. She’s my whole world, I love her so much. After reading that story, I took a step back and I was like, “who am I as an auntie and how does she see me?” She looks up to me, she mimics me, she wants to be just like me, she always wants to spend time with me, and it made me think about what kind of person do I want her looking up to? I am no longer just an auntie, but I am setting a good example for her. I want to show her that she is capable of anything she sets her mind to. I am the first one in my family to go to college and I would love to be a role model for her to see, you know, auntie goes to college, and I can do it and I want to be just like her. And through just reading that story of the man—the boy—who welcomed his brother in the world, it just connected me and him and we’ve never met. I hope that everything that I’ve learned in my 20 and a half years—today is my half birthday—I want to share those experiences with her so that she doesn’t make some of the mistakes that I’ve made, but also that she can follow in my footsteps because I feel like I am a great role model for her. That’s—you know—I have two older brothers. I never really had a female role model, other than my mom, someone that was closer to my age, so in a way we are so close, and I’ve been with her since she was in the womb.

Jonathan's Story Jonathan Daube (Northampton, MA) speaks with Selena DeCosta (Easton/Amherst, MA) about his time spent teaching in Malawi and how it shaped his view of the world for the rest of his life. Scroll to listen Jonathan's Story 00:00 / 02:34 I spent two years in Malawi. I think for me it was more valuable than graduate school. I learned an enormous amount. About the world, about myself, and when we got back, it was 1970. This country, the United States, was in considerable turmoil. And I found that my experience in Malawi helped me in ways I wasn’t even aware of. Helped me work with all kinds of students, especially African american. Because for two years I had been, my bosses had been, african american, well not american, african. It just came naturally to me to work with people of very different backgrounds. That was extraordinarily, extraordinarily helpful. So that's, that's how we got there and we went with one child and came back with two. Our daughter, the middle child, was born there. Do you look at the world differently now than you did at that age? I think I do. I understood, perhaps still understand, what real poverty is like. Beyond anything you could see, well I could see, in this country. I understood, and understand now, now that I am much older, what it is like to be in a situation where there just aren’t medical services the way we are accustomed to them. A town like Northampton with a population of about 30,000 would have in Malawi, would have less than one doctor for the whole town. So there would be all kinds of people who would have no access to medical help at all. I am more comfortable in situations that I have never been in before. I would now say, and I say it to my own children, that to be fully educated and you know somewhat understand the world we live in, you have to spend some time, and I don’t mean just a week or two, you have to spend some time in a different culture. Now the different culture could be a very different kind of family or set up down the road, it doesn’t have to be overseas, but normally it would be.

Betty's Story Betty talks about her gratitude and appreciation for the support she has received during hard times in her life. Scroll to listen Betty's Story 00:00 / 03:30 ​

MJ's Story In this interview, Mary Jo discusses her experience with assistive technology like a cochlear impact and electronic captioning. She describes her journey and how sudden hearing loss has influenced her as an individual, her relationships and her outlook on life. She leaves us with a powerful message about the importance of advocating for ourselves and others. Scroll to listen MJ's Story 00:00 / 04:01 I woke up one morning and it sounded like really loud noise I my head, it was really disorienting. I got up and I was running the sink in the bathroom, and it sounded so loud to me, like unbelievability loud. Then I realized I think I need to see somebody about this – to make a long story short immediately, the person I went to see said Well you have had a hearing loss and it's not reversable, like you have lost your hearing. I was kind of shocked by that, that she could tell all that, she looked into my ears but there was nothing to be seen, there was no infection - I wasn’t sick I had to go and have it verified, I had a bunch of tests and then I had what was called a sudden sensorineural hearing loss. Then it was just getting used to suddenly having 24 hours tetanus in one ear, I thought that was a big deal because you don’t know where sound is coming from, we are so bilateral, without two ears you can't pinpoint sound. That went on for quite a number of years and then one day I was in a café and thought I heard machines doing something weird like making a high pitched nose, I mentioned it to the other people I was with and they said, “I don’t hear anything” and as soon as I went outside, I realized it was all in my head. I was concerned that it was the same thing happening again, this time I went pretty much directly to the ER – They confirmed – well by then I had lost my hearing – being suddenly deaf, completely deaf was diffidently an experience I imagined would never happen to me. Initially I couldn’t do anything, I felt very reliant suddenly on other people to do things for me like make a phone call for me that I couldn’t do for myself, so have I adjusted very well? When I look back on it, I think I really did but I didn’t grieve the loss of my hearing and I think that came up later on, there would be sudden moments where I was just a mess because I would be with other people, and I couldn’t understand what was being said and felt completely left out, I'd go and have my cry someplace and then I'd come back and then face whatever I was dealing with again. In terms of coping, I think one of the things I have learned is that I've had to speak up for myself much more than I have ever had to do in the past, partly because it was a sudden hearing loss, and I think because of that I feel like I can be more outspoken because I don’t have this identify that has been developing for years and years about being a deaf person, I think there are a lot of positives believe it or not. I think that just having a disability is a positive thing because it changes my perspective on myself, it makes me realize that I am in vulnerable to anything as anybody else. I have met people that I would never would have met, and I had something in common with them, and I will approach them, and they will approach me if they see that I have a cochlear implant. And with little kids, I really appreciate the people, the interactions, and the connection I have had with others because of this. I have realized how quickly things have changed. I mean with no warning at all, and I read a lot about appreciation and addressing appreciation is a healing tool. I am so privileged to have good doctors and good audiologists to work with and to have the financial means to get what I need. I would hope the other person who was the friend of, or sister of , or mother of, or whatever of somebody was bearing something could maintain that sense of curiosity and not go down that fear lane and I think there is more possibility for growth and healing if you are more curious and open then if you are shut down for fear, but looking back on it I have gained so much that I never would of gotten without that.

Rebecca's Story Rebecca discusses the lasting influence of joining Science Olympiad in middle school on her relationships, as well as the way that it has shaped her goals and life to this day. Scroll to Listen Rebecca's Story 00:00 / 03:44 I just joined it initially because I wanted something to do, an extracurricular, and when I was in middle school we only had flag football or Science Olympiad. So, for me it was a pretty obvious choice, and I got put just at random in an event called “Disease Detectives” which is just very, very basic epidemiology. So the first time I did a practice exam it was on asthma prevalence in a school where the school was right next to a factory and you had to figure out what was causing high asthma prevalence. It sort of felt like it was solving puzzle, even though we were literally taking an exam. At the end, I just felt so cool—I just thought it was so cool that I could assemble all this evidence and present at the end: this is what happened, this is how it happened. I think it's something that has carried me even now to studying public health because that’s the reason that I chose to study public health is that I wanted to learn more about epidemiology, and I wanted to become a disease detective—as dorky as that may sound. One of my coaches, Senila, who just every single day would just push me, and at first I think she was someone who really scared me because she was so dedicated to her own academics. But, you know, I think her strictness had a love behind it too and so she really just—she inspired me to see what was possible in my future, and she showed me how to do it so I really have eternal gratitude for her for being such a positive influence in my life. A real beauty of Olympiad is that it really does inspire kids to go out into the world and do science. When it became my turn to coach later, I think my excitement and passion for it helped inspire kids to also feel passionate for it. I remember the first year I got, the coaches, got bowling shirts instead of normal t-shirts, and I remember the first time I had my name embroidered on the sleeve it just felt so, so cool. ​One of the, I think proudest moments of my life was, I worked with this one girl in the club almost every and we became really good friends honestly, and on the day of our actual competition her parents came up to me—and I had never met them before—and they asked me if I was Rebecca. And I said, yes, and they said, our daughter always talks about you. You’ve made her care so much about science and she really, really likes you. It's so important I think to teach people how to learn outside of the context of school. I think Science Olympiad was really, for me, it was that and for many of peers it was too. Really, it taught me to, you know, even if you’re not one hundred percent enthusiastic about something to try it because you honestly never know where it's going to take you. Because I didn’t really want to do Science Olympiad at the start and now it has truly shaped my whole young adult life.

< Back Rene's Story Rene explains how she feels being the eldest sister of her siblings. She talks through how an experience with her brother brought their relationship together. Scroll to listen 00:00 / 03:59 So my first question is what was your role as the eldest self out eldest sister? Well, I'm the oldest of four. And let's see, I have a sister who's two and a half younger, two and a half years, three years younger than I am. And then another. I had a brother and a sister seven years younger than I am. So we were the girls and twins. That's what we refer to as we were growing up. It was wonderful. It's really a position of privilege. And it's also burden. It was also burdensome. I was a lot was expected of me in terms of helping my mom take care of the other three, she was a woman who was viewed as sickly, and I was capable, and I was smart. And I was willing, because I just wanted those parents to walk me into an audit to get me what I wanted to care those kids in January of 2019, my brother, her twin died, my brother died, he had cancer. And for the last three months of his life, the three sisters we're very close family, almost too close. Sometimes we were almost too close sometimes. My three sisters and I went to Florida and took care of him in his in his medical needs were complicated. And three of us just took on what we were best at. My sister Joanne, the youngest one, his twin is good at organizing shows, she would organize things. And everything was very organized. The medications were organized, our schedules were organized. My sister Marina who loves loves, loves animals. She's such a tender hearted woman. Well, my brother had 180 pound English master. And the dog ate only raw food because my brother was very fussy about what his dogs eat. And Marina, we prepare my sister is two and a half years younger, she would really take care of moose ducks name was moose. And she would feed him and make sure he was water bowls. I mean, Moose was a lot of work. It was like having another child and did things that were more around the emotional caretaking of my brother and made sure that every time he left his bed and came out into the main area, and he had this television screen, which was like, like a sports bar television screen, it was huge. And he would come and sit on the couch and blare it out. And I made sure that every time he came out and sat down, loose was on one side of him in a sister, any one of us, no matter what was going on, one of us had to be sitting next to him, like holding his hand or leaning up against what I leaned up against him. I really wanted him to feel and know our presence and our love was very, very moving. It was such a gift to be with him at the end such a gift and in many ways it both is in a funny way it bonded us the three sisters. It bonded us in a way nothing else could have done. And it also gave us some freedom from each other because I grew up in this enmeshed family, family that just to leave the family was felt like sometimes an act of betrayal to go to college felt for me like an act of betrayal. Somehow after Mark step, having had this very intense experience. We found our freedom to be more of who we were, as individuals. Previous Next

Diane's Story Diane talks about how her goals and ambitions are constantly changing throughout our lives. Diane and Victoria discuss how they have changed throughout lives, and what has remained constant. The common thread for both women is their strong mothers. Diane's Story 00:00 / 06:01 There were eight of us in the household and I was child number seven out of eight. So I would describe myself as kind of the weirdo, you know my older sisters were very responsible and my younger sister was the beautiful baby right so, I was sort of the I mean not in I don't think this in a bad way, I just think that it was just sort of like I had the opportunity to sort of I didn't have a lot of responsibility and I didn't have to be the baby which also is a sort of responsibility. So yeah I got I got to be a little loose as a child, and I was you know, I colored a lot and collected leaves and things like that. When I was young, I wanted to be with lots of people all the time and I wanted to make food and have fun. I didn't know how to turn that into a money-making career, I just wanted to be with people very social as a little person but, that changed a little bit when I became a teenager. I became far less interested in being social in being with my family even. I withdrew a little bit. I sort of indulged in the quirkiness a little bit more and then then maybe was healthy for me my family was still there even though I kind of took a wander but, I it was at that point I did start thinking about careers and things like that and like could I be a social worker or could I be someone who listened? Because I am a bit of a talker, still. I am chatty, let’s just face it. I’m a Chatty Cathy but I wanted to learn how to be a listener and maybe take some of that into work that was helpful work to individual you know. I was never really very interested in making money I think I wanted to make a difference. You know the other thing that we spoke about once was that tape measure principle of like if you pull out each inch and you know at 10 everything that you've done by 10 inches and then 20 inches, what have you done and I'm like okay here I am at 60 inches, so far from you know that 6 year old self who was collecting leaves, and how much more time do I have? Do I have another 10 years or 20 years and do the years make a difference? And I decided after our last conversation that I want my legacy to be that I went sort of day by day. I want it to be that I just took each day and I tried, I didn't try to be happy I don't I don't necessarily want to try for that I want that to be the end result of what I do, so I I think, like you, I'm I probably smile too much I might be insanely happy most of the time but, I think that you know I think for me it's really turning into the small differences. The kindnesses and the little bits that add up to what I hope will be you know a legacy of well she didn't she wasn't terrible you know I mean I think that would be enough for me and that’s all right. It is okay and I learned that from you and and our conversations because I see it in you as well. So often you said to me, it is one thing everyday. It is at least one thing everyday and I thought wow this is this is actually harder Victoria but it's much more fulfilling and I think it makes a greater impact then holding back or not doing because there's lots of opportunities for it and I appreciate that insight into your vision of the world cuz I'm trying to put it into my vision of the world. So I guess that would be my legacy. So I know one thread that we shared was was our mom's. I don't know if that's one that you were thinking of at this moment. It was with great joy that I was able to tell my mother that I was participating in this project and she was interested to know about it. Then she died at 99 years old and after a very good and rich and wonderful life and it really meant a lot to me to be able to share that with you. I'm getting a little choked up now but it was sort of like she was really she was always curious she always wanted to know what was around the corner or why did you do that or what are you eating today or any of those things. It was really a lot and I think that it was a big part of my healing process was talking with you and you were very patient and listening to every single story but it was a big thing for me to be able to also maybe think and talking with you and some of the questions and the places we went it was like okay so maybe a part of my legacy is continue Dorising and to share with other people like you. What Doris was, what she did and how like she was kind, you know like your mom and we shared that. That’s part of the good thing, we can talk about anything, you and I. it's not necessarily a passing of a torch okay but it was a little bit of you gave me the like “you can do this Diane you can take this on” and I really appreciated that cuz I think I was feeling sort of bereft and alone and I wasn't and you showed me that. We Dorised together though. We turned her into a verb and we did it and I hope someday to get to tell your mom what you've been in my life. Previous Next

Grazy's Story Grazy discusses how her family's immigration to the United States impacted her upbringing and her values and experiences in the U.S. Scroll to listen Grazy's Story 00:00 / 05:10 “I wanted to start my story off with my Dad immigrating from Brazil to the United States. He did this in 1989. At first he came to the U.S. to send money back to my mom and my sister that were back in Brazil, and he was just here working, and he thought he might as well just immigrate our family over to the States. They came over in 99’ and that’s when I was born too in the U.S. I think their experience of being immigrants here was definitely one that had an impact on me growing up. I think that they had a lot of troubles with just being in a new place in general. I think moving, period, is hard, I can’t imagine having to move from one country to another where it’s hard to get used to new people around you, new surroundings. Growing up I always had that in the back of my mind of the sacrifices my parents made to come over here and just their story of pushing forward just to better my future, my sister future, my brothers future by being here. I think their pushing through in this country definitely motivated me, I feel like it adds pressure for you to feel like you always have to succeed, you always feel like you have to do good, you always have to hit different milestones and always work your way up and I would always feel pressure, not because my parents would necessarily put it on me but, I would always think back to them sacrificing their whole life to come to the U.S., and the U.S. is seen as like the land of opportunity, there’s this overall message of if you immigrated to the U.S. you are lucky, you are allowed in the borders. I think today it is definitely a lot harder to immigrate here than when my parents did it, but I think that there’s this message of immigrants are sort of second class citizens almost, because goes Americans just have a leg over everyone. I think being born here, I just thought “Oh ok I have to succeed, I have to make my parents trip here worthwhile.” and it was a lot of pressure growing up and it felt, it felt like I was never reaching that finish line of “Ok I made it.” It was always something else, and I feel like growing up now I can look back and say that all that I have accomplished, it was the best I could do at that time and, my parents were always proud of me and whatever I did, every milestone I hit, every little award that I got, I knew my parents knew that I pushed myself. Especially with them seeing me struggle in school, every grade I got I know they knew it was my best. But it’s hard to feel like youre never enough and, if anything, growing up here made me appreciate things more. I feel like one of the gifts they’ve given me is empathizing with others and having more sympathy for others. I think it’s something that of course if you’re not from a family of people that immigrated, of course you can feel for others, you sort of, view immigration issues differently, you see how the countries government works differently in a way, I just feel like you view people differently. I would never think of someone as an alien to this country, and so many people are so ok with saying that term in referring to people and their stories that way. The majority of my dad’s life has been spent in the U.S., and for someone to look at him and think “Oh he doesn’t belong here”, he’s contributed so much, and everyone contributes so much with what they bring culturally to the U.S. when they are from outside of the U.S., like so much of our food is from different cultures and the U.S., I think we wouldn’t be what we are today without these people.”