Full Transcript
Daria Zawadzki:
It’s been such a long process and journey, and it unfolds for everyone in such a unique way. I was in complete shock, and I left for college four weeks later after my diagnosis.
Simon Bonenfant:
Wow.
Jeff Thompson:
Introducing Daria Zawadzki.
Daria Zawadzki:
After college, I went to graduate school. And then I went to law school, and then I got a master’s in social work.
Jeff Thompson:
Daria received her bachelor’s from Harvard, her MS from Columbia, and her law degree at Fordham School of Law.
Daria Zawadzki:
And he said, “I only have one issue with your vision, with your condition. It’s that you can’t fully accept that it’s not an issue for me, and that it never will be. So that moment changed everything.
Jeff Thompson:
Facilitating tele-support groups for blind and visually impaired teenage high school students.
Daria Zawadzki:
I really wish I hadn’t wasted so much time isolating myself, but the technology changed my life almost overnight. I will put a plug in for these groups. They are totally free for the participants. You call in using a toll free number, and people call in from all over the country, and we meet by phone.
Jeff Thompson:
This interview is done by Blind Abilities Teen Correspondent, Simon Bonenfant.
Daria Zawadzki:
The more open you are in your life to meeting people and to just to new experiences, the more comes your way.
Jeff Thompson:
So please welcome Daria Zawadzki and Simon Bonenfant. We hope you enjoy.
Daria Zawadzki:
Really, just be gentle on yourself because I think the journey is just, it’s a lifelong journey and you have to take it one day at a time.
Simon Bonenfant:
Hi everyone. My name is Simon Bonenfant. I’m reporting for Blind Abilities, and I’m here with Daria Zawadzki. How are you doing, Daria?
Daria Zawadzki:
Good. How are you doing, Simon?
Simon Bonenfant:
Good. I’m doing very well, and we are in New York City right now, in Manhattan area. And Daria, what do you do? You work with the Lighthouse Guild for the Blind?
Daria Zawadzki:
Yes. I work with the Lighthouse Guild, and I’m a clinical social worker, and I facilitate tele-support groups for blind and visually impaired high school students.
Simon Bonenfant:
And you are blind as well, correct?
Daria Zawadzki:
Exactly. Yes. I have retinitis pigmentosa.
Simon Bonenfant:
Okay. Had your blindness from when you were born, or did it come on later in your life?
Daria Zawadzki:
Well, I was born with a recessive genetic disease that we did not know about until I was diagnosed at age 17. So it started with issues at night and in the dark, and bumping into things. But they really weren’t able to diagnose it until I was 17.
Simon Bonenfant:
And when you were 17, what was it like for you? Had you had any experience with other people that were blind? Because your brother is blind as well, right?
Daria Zawadzki:
My brother is blind as well. When I was diagnosed, my three siblings were also brought to the same specialist, and we learned that two of the three of them were also diagnosed with retinitis pigmentosa.
Simon Bonenfant:
Oh, so you all found out together.
Daria Zawadzki:
All three of us. Yes. And my parents were in shock because there is no family history. My parents each carry the recessive gene unbeknownst to them. And my brother’s younger, so he still had a lot of working eyesight. He was 13 when I was diagnosed at 17. So …
Simon Bonenfant:
And his name is Isaac [inaudible]?
Daria Zawadzki:
Yes.
Simon Bonenfant:
And a very good story as well.
Daria Zawadzki:
Oh, he would be amazing for your podcast, Simon. He would do it gladly.
Simon Bonenfant:
So when you were 17 and found out that you had this blindness diagnosis, what was your reactions, and did you have like a plan to move forward, or what was your kind of feeling about it?
Daria Zawadzki:
I think it’s been such a long process and journey, and it unfolds for everyone in such a unique way. I was in complete shock and I left for college four weeks later after my diagnosis. I was diagnosed end of July, and I was leaving for college. So I think the first year I was kind of more in denial, and I just tried not to think about it. And-
Simon Bonenfant:
And at that point, did you have the same vision you have now or different?
Daria Zawadzki:
I had a lot more eyesight back then. Now, I have very limited central vision, so I use all assistive technology to work on my computer and audio books, and I use a cane for mobility. But in college I could pretty much get by. People just thought I was ditzy more than visually impaired, and I was very private about it. Looking back, I wish I had not been so private. I wish I had been open. It made my life harder being so private about it.
Simon Bonenfant:
So what happened after you got out of college? You were able to go to college successfully, and then what kind of things happened? Was your eyesight still very well at that time?
Daria Zawadzki:
My eyesight, really, I felt was functional. After college I went to graduate school, and then I went to law school, and then I got a master’s in social work. And in those years I was starting to have more difficulty, but also not willing to embrace technology. So I just … Everything took me twice as long, which does not sound like a great plan. But then really for me, when I had my kids, my eyesight took a very big hit. And apparently pregnancy can do that with this type of disease because of the hormones and that kind of a thing. After my son was born, I remember I went to a bank machine, and I couldn’t … The screen was just blurry, and that’s when I realized I could no longer read using my eyes. So that was very-
Simon Bonenfant:
And at that time, what did your husband say about that? Eyesight [crosstalk]-
Daria Zawadzki:
My husband’s amazing. So we’ve been together 25 years. We met at age 20. He’s really the only person I told, and it’s never been a big thing for him. I think he’s really an enlightened person. So he knows when you love someone, first of all, there are no guarantees for anyone. And also for him, it’s just part of who I am. In our early marriage, I was just convinced that eventually it was going to be an issue for him. And then he would find someone who wasn’t, in my mind, had this issue.
Daria Zawadzki:
And he sat me down one day when I had trouble signing our daughter into kindergarten, and I was really upset about it, and our daughter was upset about it. And he said, “I only have one issue with your vision, with your condition. It’s that you can’t fully accept that it’s not an issue for me and then it never will be.” So that moment changed everything.
Simon Bonenfant:
Well, that was an interesting way of him saying it, that he actually had issue with the way you were viewing about him. So he was acceptable of it. Wow, that’s interesting.
Daria Zawadzki:
Yeah, exactly. I was projecting onto him that it must concern him. It must upset him. And he just said, “No, I just want you to be safe and happy and thriving, and it’s not a problem.”
Simon Bonenfant:
Wow. So that probably was helpful for you as well.
Daria Zawadzki:
Very helpful. It really was a very pivotal moment for me, because I finally was able to, I think, also accept it for myself.
Simon Bonenfant:
How did you get the skills and the technology that you have today? How did that come about when you felt like you needed it?
Daria Zawadzki:
Well, after our second … We have two kids 18 months apart. They’re now teenagers. For about a year, I didn’t email anybody. I didn’t look at People magazine, which I loved. And finally, a friend of mine said to call this guy from a tech company, assistive technology company. He came to my house and taught me a bunch of things. I got my CCTV and my iPhone, and it just … Things started changing. I really wish I hadn’t wasted so much time isolating myself, but the technology changed my life almost overnight. So that was amazing.
Simon Bonenfant:
And how long ago was that?
Daria Zawadzki:
That was almost 14 years ago now.
Simon Bonenfant:
Oh, and that’s been good for you ever since. That’s great.
Daria Zawadzki:
It’s amazing. And that’s why I’m so in awe of you and the other teens in our groups who are way ahead of the curve, super enlightened, and really discovering things at a much younger age in your lives, where you can manage your life and nothing limits you.
Simon Bonenfant:
And just a backstory for the podcast, we know each other because Daria runs a phone group for blind teens in the United States, from the Lighthouse Guild for the Blind in New York. And you’ve also ran a few other groups that you’ve done as well. Could you talk to the listeners about how you got involved with that, and what your experience has been like with that?
Daria Zawadzki:
Sure. So I have a clinical social work license, and about 12 years ago someone reached out from the Lighthouse. Was I interested in running a group for parents who have children with retinitis pigmentosa? So for the first few years I ran tele-support groups for parents, and then I started to run groups for college students and high school students. Before my kids were born, I was an elementary school counselor for many years, and I really love working with kids, so, and teens especially at this point. I will put a plug in for these groups. They are totally free for the participants. You call in using a toll free number, and people call in from all over the country, and we meet by phone.
Simon Bonenfant:
And what are all the groups that you’ve done throughout the years that you’ve been doing this?
Daria Zawadzki:
So for the past 10 years, I focused more on the college groups and high school students. And we just talk about leaving for college, career, dating, assistive technology, any kind of topics that the students want to talk about.
Simon Bonenfant:
Good. And you have a wealth of resources, a wealth of knowledge of people around the city and in New York. How did you get some of these contacts that you know? Is it personal experience, or did you get them from the Guild, or how did you find these people?
Daria Zawadzki:
Well, it’s interesting. And I think you’ve mentioned this before, Simon. Like the more open you are in your life to meeting people and to just, to new experiences, the more comes your way. And I had originally reached out to the Commission for the Blind for my own training, cane training, and daily living skills training. And that’s how I met the woman, my counselor at the Commission, who wound up recommending me for the job. So that was pretty amazing. Since then it’s just a network in the city of visually impaired and blind people that I know.
Simon Bonenfant:
There’s a lot of people in New York that are visually impaired and blind, so it’s a good city to be in that way.
Daria Zawadzki:
I agree. I think it’s a great city.
Simon Bonenfant:
What would you say are some of the most helpful tools that you use, like transportation? What would you say are the most helpful tools to you for your success?
Daria Zawadzki:
I’m a cane user. I think about a dog one day down the line. That definitely interests me, but taxis, and Uber, and subway.
Simon Bonenfant:
Good. Yeah, it’s very accessible for that in New York too as well.
Daria Zawadzki:
Exactly.
Simon Bonenfant:
What would you say would be advice for either students who are blind and transitioning, or older adults who are blind? What would be some advice that you would give to them?
Daria Zawadzki:
I would say don’t be hard on yourself. You’re going to have good days and bad days. You’re going to make mistakes like anybody else. And I think we hold ourselves to a really high standard when we’re trying to be independent, for example. But everybody needs help. Sighted people need help and blind people need help. And so the advice I like to pass along to teens is really just be gentle on yourself, because I think the journey is just, it’s a lifelong journey, and you have to take it one day at a time.
Simon Bonenfant:
And how was it raising your children being blind, or what is that like for you?
Daria Zawadzki:
Well, I think it’s been great because I think it does make them more sensitive, more aware of other people. I used to worry when they were younger that there were limitations I had as a mom. But I think kids are very resilient, and when it’s all they know, they do great. And I’ll tell you one funny story. When I first started using my cane, my kids were about five and six. And I had learned how to use it, and I pulled it out to walk them to school. And I had prepared a very emotional, touching speech to tell them, all about how people might stare, but this made me independent. And I was going on and on with my speech, and I was in tears. And I finished my long speech to them. And then my son said, “Mom, after school today, can we see the new SpongeBob movie?” So I realized this was not a big thing for them. It was just a cane that I was using, and that was an amazing experience too, as a blind mom, to learn that-
Simon Bonenfant:
That’s great.
Daria Zawadzki:
… we project a lot of stuff onto other people.
Simon Bonenfant:
Yeah. It’s kind of interesting. When you were talking about your husband and things like that, I think part of our fears that we experience is actually stuff that we think about in our head that we could be projecting onto people, that when we get in a situation, it actually ends up being better than we think. It’s kind of interesting how that works. [crosstalk].
Daria Zawadzki:
I could not agree more. Yeah, exactly. It’s the thoughts in your mind, like your inner critic, and yes. That’s something to be aware of.
Simon Bonenfant:
And who has been your biggest role model, someone that you could talk to, and trust, and really shares the same views as you? Who has been your biggest role model through your challenges and triumphs, and all the things that you’ve been doing?
Daria Zawadzki:
Well, I would say my greatest support has been my husband. He’s really amazing. In terms of my journey as a blind person, my younger brother, Isaac, I would say, no question, has been such a role model for me. He kind of arrived at, I would say, places along his journey earlier than I did and younger, and he was always helpful to me to take that next step. So it’s been great to have someone I can talk to. Yeah.
Simon Bonenfant:
Very good. Yeah, he’s a very inspiring person, and so are you as well.
Daria Zawadzki:
Thank you, Simon.
Simon Bonenfant:
So is there any other thing that you’d like to say to the listeners?
Daria Zawadzki:
I was thinking about two themes in my life that have been very intertwined, and those are gratitude and friendship. And I feel like anyone lucky enough to have that as a part of your life, really, you can overcome anything. So gratitude for me … And I talk about this with my brother a lot. When losing our eyesight has really been a lucky experience in a lot of ways. For me personally, I’ve learned in the deepest sense the power of friendship and kindness in a very meaningful way. And I’ve also learned how lucky I am, what really matters, not to focus on the small stuff.
Daria Zawadzki:
My friends joke around, when you’re a mom to teenagers, it’s good what you don’t see. So I kind of view that as a perk now. Some of the stuff I’m actually missing, but that’s really my views about that. And then friendship, and for me that word’s pretty broad. It’s just really just having anyone that cares about you in your life, whether it’s your parents, or your colleagues, or a doctor. And that’s another area where going through something medical, and being diagnosed at a young age, I think if you’re lucky enough to have a community respond, and parents respond in a certain way, it just fills your life with so much hope and love and all the good stuff.
Daria Zawadzki:
At the end of the day, if you take the bigger picture of your life and zoom out, it’s really amazing how lucky I feel. So my parents, Carlos and Betty [inaudible], they had three of their four children diagnosed in 1992 out of nowhere, no family history, no knowledge about this. Unbeknownst to them, they each carried this recessive gene mutation. And when we were teenagers, they were basically told, “There’s no hope. They’re going blind. There’s nothing you can do. There never will be.”
Daria Zawadzki:
So they reacted in such a resilient and graceful way, and basically just said, “We have to be a part of a solution, or at least try to be a part of a solution, and raise awareness, and raise desperately needed funding for scientific and medical research.” And in their mission to do that … And I understand that so much more now as a mom, I can’t even imagine what that was like for them. But they really rallied. It started with our whole community, our beloved Cuban Jewish community in Miami Beach, Florida.
Daria Zawadzki:
So they just joined us, and our friends and family tirelessly volunteering their time putting on events, spearheaded originally by Hymen and Jenny Edelstein. Hymen was actually my childhood pediatrician, who is such a loving friend. Joe and I later on down the line asked him to perform our wedding ceremony, which he did. So he wants me to mention he does not do weddings for the record. He’s just a famous pediatrician. But, so people like him and our friends down there, they formed this chapter. We started this organization, Hope For Vision. And in Miami was the first chapter called Heart Sight Miami.
Daria Zawadzki:
And they started raising much needed funding, which leads me to another kind of friendship, which for us, we’ve been so lucky to meet so many wonderful scientists, and doctors, and specialists all over the world. As we learned more about the research and wanted to be a part of supporting it, we’ve had the friendship of incredible, inspiring, brilliant minds, including my specialist, Dr. Sam Jacobson at the Scheie Eye Institute, who we’ve known since 1992, who not only fights for every research dollar and has spent his entire life, because he believes that there are answers out there. But for the funding, the issue for scientists for so many diseases, but he …
Daria Zawadzki:
I’ve literally cried on this doctor’s shoulder for decades. So he will stay at his office with any patient, well until 9:00-10:00 at night, well after he should be going home, and answer questions about research, and listen to someone crying, drive them to the Philly train station, insisting you can’t take a taxi. So I think it’s just been an amazing journey in that way. We had one friend and very well-known philanthropist, Adrienne Arsht, who donated $1 million to Bascom Palmer Eye Institute in Miami, designated for retinal degenerative diseases.
Daria Zawadzki:
So yes, I didn’t want to leave that out. And on top of that, the friendships with my friends, like my lifelong, I call them my sister friends from high school, from college, who helped me, and they’re with me in a way that I forget. I forget when I’m with them that I can’t see the world the way they see it, because they forget too. So it’s just, it’s really, I think, such a powerful force. My teenagers, who are my friends, who handle this with resilience and make me feel like any other mom. And of course I know I mentioned Joe, who’s been my best friend for a quarter of a century. We talk about how he’s my favorite sighted guide. But also for me, I feel like in a metaphorical and spiritual sense, he’s my sighted guide in the universe beyond just in a literal sense.
Daria Zawadzki:
I want to relay the message to other, especially young, young teenagers or adolescents, or young people going through this, that if you open your heart, and you feel that, and you and you allow yourself to feel deserving, that you can really harness that to accomplish whatever you want and go about your life.
Simon Bonenfant:
Well, that’s great, Daria. I’ve always said that if you have family and friends in your life, and you’re going through a hard time, you can get through anything. Now, going back to your parents, when you were first diagnosed with the blindness, how did they get the idea started that they wanted to do this foundation, and how did they get that goal started?
Daria Zawadzki:
So they reached out originally. They were in contact with the Foundation Fighting Blindness before we, my brother and then my family, were running Hope For Vision. But they really leaned on a lot of friends. I think my mom, her unconditional love, she couldn’t really accept the diagnosis in a way. And she really went about trying to contribute to the science. So in later years as adults, we realized, and we’ve helped her come to realize, “By the way, mom, this blindness gig isn’t so bad. So it’s okay that you have to be patient. And maybe the answer will be there, and maybe it won’t.
Daria Zawadzki:
That’s the beauty of the story is that there was no … My brother always says, like when we were younger, it was like the scientists were the heroes and the blindness was the villain. And we were like in a race against time. Who was going to win? But the reality is there is no villain. There are no heroes. These are all just concepts we have going on in our inner minds, and you have to just really take it one year at a time, one day at a time, accept what’s going on, and then make the best of it, just kind of view your life like that.
Daria Zawadzki:
But my parents are really amazing. They’re very well-respected and well-loved in their communities. So I think it was a testament to the way they live their lives, that so many friends, and colleagues, and family wanted to help our family. So it helped us also become a little more public. I was very private when I was younger and didn’t want to talk about it. But it enabled me to see how powerful it is when you share your struggles with people. And everyone has something going on. That’s the other thing you learn. You realize, we feel like we’re so significant, our problems are so significant. But at the end of the day, that’s not really the case. Everyone has their own stuff going on, so it’s kind of refreshing if you just let it all hang out.
Simon Bonenfant:
Yeah, I’d say it’s significant to us, and everybody’s problems is significant to them. Something that we might be going through, somebody else will have no problem with that because they’ve been doing it, when they’ve had the experience. But then something that they were going through, for us, it might have been … That one must have been something real easy that we went through. So it’s all … Like you were saying, it’s all relative. And it’s true to talk to people to find out that we’re not alone in our struggles and through life.
Daria Zawadzki:
[inaudible], Simon. Well, I want to mention on this topic of friendship, one of my favorite quotes, and I’m quoting Helen Keller here, who I don’t know if you know, is considered the founder of positive psychology, of the entire field of positive psychology. Obviously, she was brilliant and amazing. But on the topic of friendship, she said, “My friends have made the story of my life in a thousand ways. They have turned my limitations into beautiful privileges.” And that’s Helen Keller.
Simon Bonenfant:
Wow, that’s terrific.
Daria Zawadzki:
For me, that sums up how I feel about being visually impaired, and then how I feel about my friends. I really think it applies to any friendship more broadly.
Simon Bonenfant:
Great. I know you just found out about Blind Abilities. You’ve listened to the podcast, and you liked that.
Daria Zawadzki:
The Braveheart of podcasts, that could be your new tagline. It’s true, though. It really sums it up.
Simon Bonenfant:
That’s very good. Well Daria, thanks for talking with me today. It’s very nice to speak with you. And if people wanted to contact you about the group-
Daria Zawadzki:
Thank you so much for asking. I really appreciate it. The way to register for the group is to go to the Lighthouse Guild website. So if you go to the Lighthouse Guild, they have a section on registering for their telephone support groups, and mine is the group for teenagers. It’s really easy to register. It’s like a one page form online, and then you’re in the group.
Simon Bonenfant:
Yeah, I’m in the group as well, and I can say from firsthand experience that the groups are very good, and they’re very good resources, and we have a lot of good speakers that come to speak, and it is very good work that you’re doing.
Daria Zawadzki:
Thank you, Simon. It’s been an honor and a pleasure having you in the group this year. It’s been a total highlight for me, and it’s made the experience so memorable and rewarding.
Simon Bonenfant:
Oh, yeah. Yeah, same for me as well.
Jeff Thompson:
Such a great conversation. Daria Zawadzki, thank you so much for coming onto Blind Abilities and sharing your journey and your insight with us all. And Simon, another great job. Thank you very much Simon. And a big thank you goes out to Chee Chau for his beautiful music. And you can follow Chee Chau on Twitter @LCheeChau, Chee Chau, Chee Chau. And be sure to enable the blind abilities skill on your Amazon device just by saying, “Enable blind abilities.” I want to thank you for listening. We hope you enjoyed. And until next time, bye bye.
Multiple voices: When we share what we see through each other’s eyes, we can then begin to bridge the gap between limited expectations and the realities of blind abilities.
Jeff Thompson:
For more podcasts with the blindness perspective, check us out on the web at www.blindabilities.com. On Twitter, @BlindAbilities. Download our app from the app store, Blind Abilities. That’s two words, or send us an email at info@blindabilities.com. Thanks for listening.
[Music] [Transition noise] -When we share
-What we see
-Through each other’s eyes…
[Multiple voices overlapping, in unison, to form a single sentence]
…We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities.
Jeff Thompson:
For more podcasts with the blindness perspective:
Check us out on the web at www.BlindAbilities.comOn Twitter @BlindAbilities
Download our app from the App store:
‘Blind Abilities’; that’s two words.
Or send us an e-mail at:
Thanks for listening.
*****
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