Jessie Lorenz and Amber DiPietra

00:03 Okay. There you go. Now we're good.

00:07 You can give your name. Okay, my name is Amber. Catra. I'm 31 years old and today is April 29th, 2010 where the storycorps booth in San Francisco, and I'm here with my friend and colleague Jesse Lorenz. My name is Jesse Lorenz. I'm also 31 years old. It is April 29th 2010 and I'm here in San Francisco, California with my friend Amber De Pietra.

00:43 Amber we're here today kind of to talk about the lighthouse cuz that's where you and I met maybe we should start there and talk about how we met. Okay.

00:55 So we met in.

00:58 Two year it was April when I started there in 2008.

01:04 And at the time I started as vision loss resources Center specialist and I was working directly for you and you were your title was that's always a public director of public policy. We had this really great program at the Lighthouse call the vision loss resources Center where people could call and get information and referral on Linus and low vision and you were one of the first people to actually start working in that program.

01:43 And how that program was something that you in particular created is that program didn't exist until you begin your work as director of public policy at the Lighthouse. What made you start the vlrc? I was hired to start the vision loss Resource Center. It was an idea that came of age in the brains of Anita Aaron the lighthouses former CEO.

02:11 She wanted to have she felt that it was really important that people who are blind or visually impaired be able to access information know that's one of the deficits with blindness you and as somebody who's blind I can I can speak with personal experience to that blindness isn't so much the barrier. It's access and access to information in particular is one of those challenges that it comes up in the life the blind folk quite often. So we need a wanted to have a place where people could call and get information on blindness and visual impairments. I was brought on board to start the vision loss resources Center and we staffed it with one full-time and two part-time folks and the department was relatively successful successful because it had a couple of components that were unique and somewhat difficult. I think to replicate

03:11 It was a completely pure run. So everyone answering the telephone number the toll-free number someone who experienced vision loss firsthand and there was also a very strong advocacy component when you're sending an answering the calls from people all day you start to see Trends don't you think like certain patterns of behavior?

03:34 Yeah, I mean when you say advocacy.

03:38 It's on the simplest level. It's it's helping people feel that.

03:44 They can get Empower through information and direct the course of their vision loss and their rehab around that and at whatever level they can direct the course of things for themselves consumer control and consumer empowerment. But also on a systems-level I was I was very surprised how watching the types of calls that came into the vision last resource center on an ongoing basis really helped develop. Advocacy strategies. Advocacy strategies around systems issues. Like, you know, the Muni bus drivers are not announcing the stops on a particular line or you know, people are not able to get assistance with their applications at the local food bank something like that. So it was always interesting to me to be able to kind of monitor the trend.

04:44 Based on the types of requests that came into that hotline. Do you still find it to be as it? Does it still work like that?

04:53 It goes in waves there are different there. It really depends. It seems like we get different types of requests in little clumps things, of course change the great deal the lighthouse. So a lot of the advocacy request go directly to a new coordinator of public affairs and lately things have been focused on a micro-level in terms of them. And maybe this is just my iPad.

05:26 Position but because as I'm someone has visual impairment and chronic illness related disabilities, I feel like lately I talk to a lot of people who call in who have just started to have vision loss and have complicated eye issues layered eye issues with glaucoma and cataracts and

05:49 So I feel really great that I'm a real person that they can dial a number and talk to and can map out what rehab and tools would be at the other end of significant vision loss for them. And even if they're not really there yet. They still have a lot of functional Vision. It's really enlightening to them and it's really I think

06:16 Emotionally

06:20 Supportive for them to feel that there is someone who can fill them in on what the other end of their vision loss might look like what I mean someone who's appear which is so much different than a medical professional or social worker or you know, just a good-hearted person working in a non-profit setting. You know what it's like to be visually impaired and to have chronic health issues because you flick without all your life. Yeah, and I I actually

06:49 Every what's great about the vision loss resources Center is that we can do things myself and my two colleagues have different styles and we can approach things differently and I am certainly someone who tells the other person on the line what my situation is and you know, usually because they asked but I'm always ready to share that and I've also learned over time that it's completely okay to give my opinion on things and that sometimes that's all you can give you know, people say well, what would what would you say if the doctor said this to you or the doctors not giving me the information I need and I would say well in my situation I've just been very assertive and I've taken notes and I've asked them to clarify things and you know, that's

07:39 Is that necessarily professional information? It's not it's not you can't pigeonhole that into a type of service, but I'm interacting with them as a peer.

07:50 And a lot of times they hang up and they say it was really great to talk to you you're who I needed to talk to you today, and it feels so amazing just to give a little bit of clarity to someone for that time that we are on the phone together.

08:05 Tell me about what it was like for you growing up as a kid with disabilities.

08:11 I grew up in Florida which is a funny state for people with disabilities because it's you know, like the retirement capital of the country. So there's many senior citizens there who are disabled. Although they wouldn't consider themselves disabled that to them. It doesn't cross over Sigma.

08:35 Yeah, they you know, they look at people with disabilities. Is it something different but they're seniors who do have impairments just talk a little bit about that because I think it's an important distinction that I feel doesn't always get teased out. But I think what you're talking about is this reluctance for people who clearly have physical limitations that impact their ability to walk toxie breed here engage in some of the activities of daily living there clearly people that have disabilities but actually calling themselves someone with disabilities is terribly there's a lot of shame or what we would do you think it is. I think it's it's Stickman shame.

09:26 I think so too. And I think it has different breakdowns. I think it's generational. So seniors in the time that they grew up. It wasn't it wasn't a pride where disability wasn't a group that identified as having Pride. So it's not something that they can easily Embrace saying I belong to a disability Community even as they age and have disability. So that's part of it and then

09:55 Be if they were someone who was boring another 80 years old and they've suddenly lost their Vision. They don't identify as someone with a disability. So it's also a timing issue and their life.

10:07 Yeah, but it it does relate a lot to the disability community and independent living movement is something that's newer that didn't start when they were young stars in the 60s, but I derailed you so you grew up in Florida there a lot of seniors in Florida who don't consider themselves people with disabilities, but they are but they are.

10:30 And

10:33 They all Drive most of the seniors with disabilities manage to still drive in Florida, even when they shouldn't even when they shouldn't and so the Wiz and then there's not there's not a real strong disability culture there and so I didn't have really any way to fit in.

10:59 And my family is Hispanic and they have great genes. So they're these really athletic looking can Beach going people which I love and that's very much a part of who I am too. But the beach was so hard for me to even walk across it was, you know, I can remember my aunts and uncles carrying me when I was 12 and 13 14, and I was happy to get to the water.

11:28 So it was it was difficult I didn't fit into.

11:33 That culture, you know, it's like the Southern, California.

11:39 Like muscular fit Beach type people that was also true of Florida and my family to talk about your disability a little bit. What is it? How does it impact your life to walk? I have rheumatoid arthritis started as juvenile rheumatoid arthritis arthritis, which is so again. There's these weird lyrics I lived in Florida where there are a lot of seniors and typically arthritis is thought of as a disease that only old people get but in fact it is a very common childhood disease and what happens is that the regular kind of arthritis that Elders get is because over time wear and tear on their joints causes.

12:25 Cartilage loss and then the sort of deterioration of the joints that goes along with that but when a child gets rheumatoid arthritis, it's because it's related to an autoimmune problem the immune system gets tripped up and starts attacking its Cartledge. So I lost a good part of my cartilage before I was 2 years old, which is also a time when my phone's my skeleton was still forming to its really pretty devastating and I was also born in a weird not a weird time, but I was born

12:58 What's the word for this will I just missed the window? I was born in the wrong window of time because now children who get rheumatoid arthritis have all kinds of new drugs available to them that really sort of instantly put the disease in remission, but I was born at a time when the only treatment was 7 baby baby aspirin a day. So there was no I really had the full effects of the disease and it was in every joint in my body.

13:30 And so are you in pain constantly?

13:36 I'm not I think I'm always uncomfortable, but it's so much what I'm used to that I don't think of it that way. I'm not in pain constantly because I've had it for 29 years now and at this point that real inflammatory corrosive process has sort of burn itself out. And what I have now is a lot of orthopedic problems and deformity and stiffness, but not a lot of active swelling but

14:11 So yes, oh and I identified with seniors cuz that was there was no disability Community. There were no other young sort of vibrant people with disabilities in my life, but coming from a big Hispanic family. I had I was raised by my great-grandparents will my mom and grandmother worked and once they went to nursing homes and spend a lot of time in nursing homes with them visiting them and I think it was because I mean, I was 16 and I would go hang out with him at the nursing home and it

14:41 It wasn't a nice Progressive nursing home. It was and not a very happy place, but I felt connected to them because the same deterioration in their bodies was in mind even though I was 16 and they were in their 70s.

14:56 So I had a weird identification process.

15:00 Nursing homes are such a politicized.

15:05 Thing and end as well, they should be in the independent living and Disability Rights communities because

15:14 Funding streams like Medicaid and Medi-Cal prioritize the right to go into a nursing home, but don't provide a right for people wishing to live in the community and all states. And so that's an interesting. It's just interesting when I hear you talk about, you know, you connected you found Community you found Kindred Spirits in the nursing home when you were 16 because they had the same disease and yet, you know, it's it's it's a type of setting that we sort of

15:51 Fight to make sure that people don't have to go into nursing homes. Yeah, I mean it wasn't the ideal situation and end.

15:59 You know that was in a sort of low income part of the city I was from and it wasn't it wasn't a great nursing home. And I'd like to think that if I go back and visit it now and I think it actually be emotionally hard for me to go back and visit now, but that that nursing home has improved a lot. I'd like to think that what you talked to him about. I mean, how did you connect that? I was very connected to them imaginatively. They were funny and

16:27 Weird and it didn't have anything to do with them having Alzheimer's I mean they were nuts before they had Alzheimer's they were loud and they would fight in Spanish and they my great-grandfather had been this great carouser Taxi Driver type guy.

16:43 So, you know I connected in that way but the odd thing was that even after they died. I still went back to the nursing home and hung out with some of the other seniors.

16:55 And they all had profound Alzheimer's so we didn't talk about much in a linear way. Why do you think that was your connection? I?

17:09 I think was trying to experience understand the experiences that I've gone through physically and I didn't have other people my age had shared that and

17:22 I felt that I could be.

17:26 Empathetic and strong and

17:29 Not depressed by that environment. So I felt that I should do that that I should go there.

17:38 And also, you know a lot of those seniors weren't as lucky as my great-grandparents had been because the fact was that even when my family couldn't care for my great-grandparents anymore.

17:48 And they went to the nursing home. We would go everyday to make their time there better to bring them food to keep them company, but other seniors didn't have that situation, which is really the reason one of the big reasons that nursing homes.

18:05 Are so tragic for people they are isolating you go from a lifetime of being able to control when you eat when you sleep when you go to the bathroom what you eat to a life where all those decisions are made for you.

18:24 Yeah, and it's really I mean and I don't mean to I wasn't always that.

18:31 Generous about the time I spent there because on another level they there were people who lived there that were younger they were in their forties. And now I think when I was 16, I didn't understand why and now I understand why they didn't have the supports in the community or didn't know how to seek them out so that they could live on their own one woman in particular Sheezus Lively 40s, maybe even 30 year old woman and I don't know what their disability was. She was maybe a little person but she must have had some other disabilities and I remember my grandmother always trying to get me to be friends with her and she like the same kind of movies. I like when I was 16

19:18 And I was really resistant to it. I didn't want to associate with her cuz I thought

19:25 I guess I missed the thought is that we're like what my trajectory is because she was closer to my age and she lived in this place. And yeah, it was hard for me to make sense of that and I didn't want to be friends with her cuz you know, you're 16 and you don't want

19:43 It was confusing. It is confusing. I bet it was interesting or confusing to look at that and think did you ever think to yourself? Like is this going to be me?

19:54 I guess I must have on some level.

19:59 But I

20:03 So I'm a poet and I was very artistic person and I just lived through novels and I had this idea that I was going to live in this sort of

20:14 Romantic sort of urban environment and that I

20:19 I think I even even though I had never gone to a urbanspace to a city like San Francisco or New York. I think I understood that it would be easier for me to live somewhere like that. And so from the time I was six years old.

20:32 I was telling my family that I would move away one day and live in Paris. I had died like fixated on Paris.

20:39 And dumb

20:41 San Francisco instead and

20:45 It worked because simply because there were buses that could get me around.

20:51 Yeah, that was what brought me out here as well as I was born in, Colorado.

20:58 Down in the very southwest corner in a little town called Durango 15,000 people and when I came of age I realized I don't drive I'm never going to drive so I better move somewhere and where there's good public transportation.

21:17 But I think it's very interesting like

21:21 That you had kind of projected this imaginary living in this sounds like tell me if I'm getting it wrong. It sounds like you had to sort of imaginary Universe of where you were going to live and it sounds somewhat like you made that happen.

21:43 I made it happen.

21:47 Kind of by stumbling into it. I was lucky enough to go to this really amazing sort of liberal arts. Hippie radical kind of college and I had it still in Florida. So it was it was a transitional place because it was an hour from my home and it became very clear to me what school new College of Florida I live there for four years and it was an hour from where my family lived which felt like it might as well been across the country cuz then it changed everything and I realized that I could definitely live on my own.

22:21 And I just needed feel to get around once I lived on my own it was hard because I I mean things like making food and even dressing myself or exhausting and I think I built up a lot of strength over the four years of being at college.

22:41 Until then when College ended I freaked out and thought I can't go back to my family's house or what am I going to do?

22:49 And I had gone on a trip with a friend of mine here to San Francisco because she was going and then I said take me take me and I went and because I came with her so I knew I would have her help. I had that little opportunity to test it out. We're just here for a few weeks and I saw that there were buses that took you everywhere.

23:08 And soap Wentz College was over. I thought I have to go back to San Francisco, but I really didn't I didn't do tons of research.

23:18 I just came me to.

23:21 And it ended up working great.

23:24 I think there's an interesting uniqueness to San Francisco, which I really fell in love with and I still really enjoying it's just it is the city where

23:39 It's accepted. It's expected that you push the political envelope. If you want to have a lifestyle that's off the beaten path. This is probably one of the best places in the country to live. I don't think that disability is a lifestyle choice or I don't think I believe disability is just a natural part of the human condition. I don't feel that it's off the beaten path and yet this is a very tolerant City and it's and it's City that I feel like really makes room tries to be an inclusive community on a lot of levels.

24:14 Yeah, it was I think those must have been some of the happiest weeks in my life when I was here in the city and thought Oh my God, I moved 30,000 miles and

24:27 I'm going to take myself to the store now and then I'm going to go to a bar like I do and you know, and then I'm going to go to my graduate school classes. I'm taking and it was I just find it so funny now cuz I was Harden City person and I hate the bus and it's crowded but in those first few weeks I was elated to ride around on the bus.

24:52 Yeah, that's great. What's one of your happiest memories as a adult with a disability like one of your happiest animals proud memories?

25:06 I guess it doesn't have to do with your disability. But I think we're we're kind of talking about disability right now and

25:14 It is something that you and I share. So I think it's it's it's good to talk and to acknowledge the moments when your disability is a positive or an asset.

25:28 Yeah, I mean, it's the major way that I do find myself now. I mean, I feel like I found besides being a writer in a poet which

25:36 It's something that I would have been no matter what but it didn't give me a strong directed.

25:42 Fence, so I don't know if some of my happiest moments were those first few weeks here in San Francisco being amazed that I done it and that I can literally so far all the way across the country to do very simple things basically to take a bus to work on my own.

26:02 And then you know, it's a major moment. That's Define my life as it is now is coming to work for you at the Lighthouse really and meeting you and thinking like yeah, this is this is how I wanted to wreck myself towards advocacy and public policy and services and meet other people with disabilities that have so much Creative Energy and I just felt like I was finally on the path. It was all coalescing.

26:31 It's pretty powerful. It's in it's a tough thing. I think for me was.

26:38 Coming to terms with my identity as a person with a disability and

26:45 That was a very there are so many messages. I think that I have received from the outside world for my entire life, but you know.

26:57 I keep having to wake up my guide dog because he's over here that a little bit not too but I think it's

27:12 It's a struggle when for young people I was a struggle for me to come to terms with other people's expectations, which were often very low expectations for me and

27:30 My own self worth

27:36 Often times when I tell people like if I'm on the phone or something and they don't see me I say I you know, I'm blind the first thing people do is they apologized right? And that would be like if you said to me I have brown hair and I said, oh I'm so sorry for me. My blindness is just a characteristic does it mean that I'll never be an airplane pilot probably?

28:05 But it also means that I've gotten lots and lots of opportunities that I wouldn't have got enough travel all around the world playing sports.

28:16 I think it's hard and I think it's an incoming on on us to really create places for young people in particular to be able to talk about that stuff to be able to talk about their self worth and some of the systems and play special education systems that don't adequately address that or allow that to take shape. Yeah. That was my experience maybe in my experience. I had some really wonderful teachers who had the best of intentions and kids and the messages that Society explicitly or implicitly, you know sent out where that I was somehow broken.

29:04 I don't know. What did you get that message?

29:09 I feel like I didn't get any messages. I was kind of I wasn't treated badly in school. You know, I really had a few instances of kids picking on me that didn't really happen. But I felt like I was kind of ignored I was sort of just in my own.

29:27 Auraled, you know, I'm in the teachers paid attention to me because I was sort of an advanced student but there was an awkwardness. There was a constant awkwardness like a

29:44 You know things that would have been simple like I would drop something and I couldn't pick it up because my knees are very stiff and teachers would so often just look at me and then look at the thing, I dropped and ignore me and the thing and I think back to it and I don't think they were trying to be mean but they just couldn't figure out how to do a simple.

30:09 Make an accommodation. I don't know if you would call that an accommodation, but they were very weird it out. But I feel like that mess and when I hear you say that I get the message that

30:23 What they're saying to you as well get down and get it. Will they were once and future told me I should be able to get it.

30:32 Yeah, actually really don't have a lot of old sadness and like anger about stuff like in third grade and I remember this teacher yelled at me in front of the whole class. And when you're in 3rd grade, that's like the bill was hating because I was sick and you know, 9 year olds 8 year olds are sloppy and like I had all these tissues and I I dropped them then I couldn't pick them up and cheap kind of told her in the story and years and she was horrified and disgusted and she yelled at me in front of the whole class and I just thought an idiot because she knew she had to have understood that it was I mean, I was like a really weak child. It was obvious. I was in pain when I was eight. Why can she have just set them up, you know later.

31:26 And and what?

31:29 That does over and over and over again, you know like those types of situations. I have similar. I have a similar story where you know, I had a lot of equipment in a braille blindness equipment takes up a lot of space.

31:52 I had a teacher who just didn't like how much space my stuff took up and she had no qualms about I mean, I heard her talk talking about how I took up my equipment took up more space than you know, five students in and overtime. You know that stuff really started to make me feel like I was doing something wrong. I take up too much I take up too much space. I'm too loud. I take up too much space was a really hard year of school and the other was that they remember 4th grade.

32:25 And yet

32:28 Now as an adult, I try to look back at it more objectively and I try to think she had 20-something students at that that particular year. I had I had not haven't any type of Aid did have the repair professionals in my classes for most of my elementary school, but not that ear when I look back at it. I think she was really unequipped to be helpful and as an adult I can see that there was resentment probably and yes as a kid, I read it as I'm I'm I'm bad. I'm loud. I take up too much space.

33:09 Yeah, well guess I probably should have a more gracious to you. That way. I have a lot of I think.

33:17 Anger about how some of the teachers were I can articulate it right now to you in a very calm kind of emotionally detached setting because you know, we're talking and storycorps, but I still have a lot of anger and insecurity and fear like what if that's actually true. What is a lot of people really think that yeah. Yeah. Well and the lighthouse actually I have gotten a lot of calls from people who are trying to pave the way for their visually impaired kid in the special ed system.

33:51 And I often can't tell them specifics cuz I refer them to Great agencies that like the California School for the Blind and then the case organization that helps parents do special you no intermediary work with their special ed Department of their school and give him those referrals. But I also listen to them and a lot of times it's moms or dads who are saying

34:16 My kid's school hates me because I'm always complaining because you know, they did this and that and they didn't listen and I just think if we could just do this then and I'm like, that's okay my school hated my mother who they're like really and so it's really great to talk to them and just listen, you know, and let them vent a bit and just think I was going to keep pushing it and and sometimes reframing for them a little bit cuz you know that

34:50 About what is possible and where they can go with the different things. They need to make happen. You know, that's a really powerful point that you're making but I think both of us if you looked at our lives

35:02 And you compared with the majority of people with significant disabilities are age you and I are doing real well, and my mom also was hated by the school district and doctors and professionals that were involved in my life. And I think it was hard for her. Of course it was hard for her and

35:26 I'm so glad she was she did it. I'm so I mean I am I am the end results you are the end result of mothers that went up against big special education systems to make sure we had what we needed and it's

35:42 You know isn't it and as a result, my mom is still so invested in my work and

35:48 I told my mom so much about the stuff that happens in my work my work as in the disability community and she's you know, she's so interested. It's like this Continuing Story for her.

36:01 Yeah.

36:06 What something that gives you hope?

36:15 I think I'm still very optimistic. I'm still holding on to that great feeling I had a riding a bus over the hill and that it can happen and that

36:29 You know, I I see different projects everyday news of different projects every day that come through my inbox initiatives like the youth organizing project has the kids disabled kids going around presenting on trying to get a resolution passed at each disability history in the schools. And I just think not only said so important and so needed but it's a creative idea for an initiative benefiting the kids and potentially the schools that will end up teaching disability history. It's a it's a great Synergy siding.

37:07 The future

37:08 What gives you hope?

37:11 I really like the youth organizing projects that I see developing as well. I also

37:21 Recognize that 2010 marks the 20th anniversary of the Americans with Disabilities. Act was signed in 1990 by George Bush the first

37:31 And in preparation for all of the you know, start of community celebrations that are taking place in July. I'm seeing so much more political engagement and I liked it. I see our community actually starting to participate more in social media. Social media is an outlet where we can actually tell our own stories. We can control the message. It's not the media talking about. Oh no poor blind person or poor person who uses a wager we can tell our own stories and I love I love the control in the power that that gives this community and I love seeing more people starting to to sort of seas that power so that gives me a lot of Hope

38:23 It'll be so great when the videos start coming in for the it's normal video contest. I mean just look at me. We have a we have a campaign right now called it's normal read different word. We're trying to redefine the term normal. It's normal is a campaign that believes disabilities and natural part of the human condition were using the word normal because to me not being able to see is certainly normal to you having arthritis and having visual impairment is normal week. We get to Define normal and that's pretty powerful.

39:01 Yeah, that's very exciting.

39:04 One minute. Thanks so much for doing this with me Jesse. That was fun.

39:20 Well, we didn't talk about.