On this episode of Change Makers, we continue our conversation about how parents, grandparents and education professionals advocate for their children, in school and in public. They’ll share their experiences and what they’ve learned on this journey.
Podcast Participants (In order of appearance)
Additional Links
On this episode of Change Makers, we continue our conversation about how parents, grandparents and education professionals advocate for their children, in school and in public. They’ll share their experiences and what they’ve learned on this journey.
Podcast Participants (In order of appearance)
Additional Links
Welcome to Change Makers , a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.
Sara Brown:Hello and welcome to Change Makers. I'm APH's Public Relations Manager, Sara Brown . And today we are continuing our discussion on advocating for your child, but I'm gonna turn it over to APH's Family Connect, Digital Content Manager Melisa Matthews to lead this great panel discussion. Take it away, Melisa.
Melisa Matthews:Thank you so much, Sara. I'm Melisa Matthews , and today we're gonna continue the important discussion with three special people who have children, grandchildren, or they work in the field of blindness and low vision. Hello everyone and welcome to Change Makers .
Angela Baldwin:Thank you. Good evening.
Jana Villemez:Thank you. It is an honor to be here. Truly.
Rob Harris:Glad to join everybody. Evening. Thanks for having us.
Melisa Matthews:Can you all introduce yourself and share how you became connected with the A PH Family Connect Advisory Board?
Angela Baldwin:I can begin if you'd like. This is , uh, my name is Angela and , um, I am the grandparent of a , uh, presently 5-year-old who has a visual impairment. And , um, at some point in the early years, I, when , after she was born, I became , uh, interested in APH and I was getting their newsletter and , uh, came to my attention that , uh, they were looking for , uh, some people to come on board and be on an Advisory Board. And so I sent my letter of interest in and stated a few things about myself and some of , I think I mentioned some of the advocacy that I, I hoped to be able to participate in. And , um, they brought, they invited me to join them.
Jana Villemez:Yeah, this is Jana speaking. Um, I really have been involved in working with families for over 15 years. I have a background in social work and had worked with families in other areas. Um, besides what now I work for the National Center for DeafBlind. And so the partnership between APH FamilyConnect was one reason. The other reason truly is I believe in Family Voice, and I believe that with the deaf-blind population for families from which I can speak , um, family voice is so important. And so that's kind of where I come from and wanna be able to equip and empower families, especially for our population to be able to be heard.
Rob Harris:This is, Rob and I come into the conversation kind of with an unorthodox role . Um, I , I often find myself as dad , um, unique to the conversations, but it's been , uh, quite the, quite the ride . And, and I couldn't ask for anything more, but our, our journey with APH started with the Excel Academy. Um, they offered some outreach and we took advantage of that early in 2020. And , uh, the rest is history, of course, you know, always looking for an opportunity to both contribute and learn. I found that the APH , uh, advisory board was a perfect fit for me.
Melisa Matthews:You each have a unique role in the field and families. Can you share about advocacy and what it means to you?
Angela Baldwin:Oh, I can start again. Uh , this is Angela and advocacy for me, it's kind of a two-pronged thing. Um, I, I found initially that it was all about my granddaughter and the family and, and wanting to help her and to help the , the family dynamic and, and the care that she would be able to get. As I've come along, just over a couple of years here, I find that I'm also looking out broader than just the family. And I feel that , um, the , the visual impairment that my granddaughter has is very common. It's called cerebral or cortical visual impairment. It is a brain-based visual impairment, and it is said to be the leading cause of pediatric visual impairment in our country. And yet it is , uh, the , they , they , the authorities and the, the professionals have been way behind the eight ball in recognizing this , uh, visual disability. And , uh, I feel in my advocacy that I would like to reach out and make sure that acknowledgement and awareness is happening. And of course, that eventually will hopefully help my granddaughter, but it's more about all the other children who are being missed, who are falling through the cracks or being misdiagnosed or not diagnosed at all. Um, the word needs to get out, and I'm just gonna do whatever little part I can.
Jana Villemez:And this is Jana. Speaking based on , uh, what Angela said. I think it's a , um, it makes me realize that the families that I've served over the 15 plus years, especially with the deaf-blind population, is I believe that because I told you that family voice is so important, you have to meet the family where they are. And so in my work with professionals, I try to explain that everybody is a family leader in their own right. Whether it be for their own individual family, whether it be to communicate with the school, which is truly another form of leadership, and whether it be at what Angela says to grow to the point of having a voice for other families, because there's an equity component to that too, right? And so I believe that advocacy means families being able to tell their story at the minimum. I mean, that is, and I don't know of a family that doesn't like to talk about their children. And if we can get them to be able to talk about their child, that's advocacy. That begins the journey to be able to do that. So that's kind of where I'm at from our , from my perspective,
Rob Harris:And this is Rob. But the advocacy for me has kind of evolved over the years. Um, our Young Lady's 17 now. So we've had opportunity for a little bit of experience over those years. And a big part for me is realizing and coming to realize that we have not only a rare diagnosis, but we're in a really small population , um, visual impairment, the , um, hearing loss and, and the sensory disabilities just has such a small population. And so , um, in our world, that meant we live in rural western Colorado, so you can imagine, I call it the wild wild west. Um, we don't have all the resources that a big city, even Denver , um, it , it seems like it's in the same state, right, Colorado. Um, but it's two mountain passes away. And so often just physical barriers to getting to those resources are a challenge. And so it started off as, as an opportunity to kind of just take up space and really say, Hey, this has been our experience in these various systems. And then it's really changed into more of , um, kind of starting off and leading with the example of being a voice for a lot of those folks that, that , um, are still trying to find their voice or still trying to find their, their space. And so it's been remarkable for me in that sense. And it's, and it's also about choices because as we've ventured out on the journey, we've realized that sometimes it feels like you don't have a choice, but in advocacy, you can really choose to be a part of the change that you , you really need for yourself, but others as well.
Melisa Matthews:In your experience, you may find yourself modeling advocacy skills for your child, your grandchild, or a family you work with. Can you share how you approach this with the family or in your community?
Rob Harris:Uh , I'll switch things up and take the lead. This is Rob again. Um, I , I'm excited to share. Yesterday being Valentine's Day , um, our young lady was out not only doing her normal Wednesday routine, but it turned into opportunity to hand out braille Valentine's Day cards. And so as she went to her appointment starting in the morning , um, she was able to, and these, these are long-term appointments that she's been going to for pretty much her whole life. And while the setting and the scene doesn't change, the staff often do at the front desks of check-ins. And , um, it's really neat to see, 'cause she is at this independent stage. So I'll drop her off and, and then come in later when I come to pick her up. And so I get to chat with the staff when she's not around. And they were just completely tickled pink about seeing her over the years and how much growth she's made. But , um, the modeling of the advocacy in our town includes , um, her really and , and her unique needs. But she's created the solutions herself. She's a part of a peer-based group called the Young Visionaries. And it's just a couple blind youth that meet weekly. But it's really been neat to see the rest of the community observe their efforts and really honor them by putting resources together that really didn't exist yet. But now they're seeing that if they follow their, the , you know, the , the young ladies and the, and the young peers needs, then the solutions will come naturally. So it's been a real privilege to be her dad and to , to really see her. She's quite, quite the , uh, she's definitely my hero.
Jana Villemez:This is Jana . And I think Rob does a great job of explaining the gift of the child and what it's done for the parent. And so , uh, modeling advocacy skills is one way to look at it. But we can't help but look at our own child and say, what a gift. And in my work with families, especially when it comes to transition , um, and that's kind of what Rob is definitely working in that same vein where, in my experience in working with families who are , um, ex , you know, trying to get ready for their child to grow up. And I have found that , um, really what builds the family up to advocating is to try and come to the realization that they've gotta let go at the same time. And so that for our families, our population so much, is to give them that space that , um, knowing that's a journey because it, that comes to a point where given all of their life experiences of trauma and grief and crisis , um, they can finally come to a point, especially when they're working with transition, to be able to say , um, maybe I can breathe here and have permission to plan. And , um, again, it's unique to each family and it depends, but, and I don't know of a family anywhere that is raising a child that doesn't have a hard time letting go. And , um, so it's more on the parent to allow it , um, more than it is. And the child's alre already ready.
Angela Baldwin:So this is Angela. Um, again, I have our family member is, has just turned five, and we're talking about self-advocacy here. And actually, yes, it does begin at a very young age. Um, and in fact, we had to really think about that. We had to, we had to start hearing the term self-advocacy and think about how can we start at this age? And this sounds so simple, but it's so important. Her language was delayed, she's doing quite well now, and speaking in full sentences and being able to express herself. And we thought, well, it's very important for her to be able to say simply, I need help to ask for help. She, she was not doing that. And you know, a lot of children, maybe even typical children at that age might not actually say that. And so it took some, you know, it took a little work and a little encouragement, and she's very comfortable with that. Now it's , there's something she's having trouble with. Um, she just pipes up and says, I need help. And people respond to that, you know, teachers respond to it and peers respond to it. Um, so we feel like we've started the little journey here. And , um, I think it's very inspiring to hear from others such as Rob, who , um, talks about what his daughter is doing at age 17. It's just phenomenal. And , um, that's my hope for our family, for our, for our little one.
Melisa Matthews:What is an example of when you have found your child, your grandchild or a family successful in their journey to be their own advocate?
Rob Harris:Um , Rob's no stranger to talk, so I'll, I'll be happy to go here. Bridge the break the ice here. Um, it , it's fun to talk about these stories now because it's been such a long journey and there's often a lot of , um, struggle. There's a , a lot of , uh, loneliness in the journey sometimes. And we're at a stage now where we've come, come to the point of helping others and kind of building those resources that we need. That , um, the , the brag moment that I get to share today about is , is skiing. We're , we're headed for our second skiing trip tomorrow . And , you know , our family skis and we try to recreate and do a lot of stuff in the , you know, we live here in western Colorado on purpose, and so we have an opportunity to be outdoors and, and do these , uh, I didn't realize they were extreme sports, but somebody said, skiing is so extreme, I can't believe you guys do that. And, and so a couple weeks ago she was able to get onto the mountain for the first time, and I shared pictures of it and it, and it turned into other people seeing the hope that she's leading our, our little community. And, you know, our, our town's not that big, but it's big enough that everybody knows each other. And so when word starts getting out, you kind of, you hear the stories come around to you after they've kind of been told, and we didn't realize it, but at the time, there was kids that wanted to ski that just had a little bit of nervousness, or they, they just didn't know what skiing even meant. They hear it all the time. But the concept of, you know, two, two sticks on the bottom of your feet and going down a snowy mountain , um, that, that's just a perspective , uh, that some folks don't have. And, you know, by telling our story and kind of living our journey , um, and, and I call it facing the giants, but as we face the giants so too to other people. And, and that for us has been , um, kind of the story that we're trying to highlight right now is that it's not about us and it's not about kind of our experience, but rather the bigger part of you can do it in your space too. And so that's what we're trying to share. And , um, you know, I speak a lot for my daughter up until recently to where sh her speech also has gotten a lot better and frankly just, just rocking it and sticking up for needs. But , um, it's real cool to be a part of that. And, and that's our hope is is it , it it creates the momentum that we need. You know, we're a small population, but boy , we can get loud <laugh> .
Jana Villemez:That's great. Rob, this is Jana speaking, and it makes me think again, just universally in terms of , um, the advocacy of the child where it might feel a little genetic. You know, it depends on the parents and who the parents are and , um, but the, but the real reality is the child has those advocacy skills and innately to wanna be who they are. And , um, I, in , again, this is just my experience is I've seen it's the child that's helped make that shift for the parent. The other thing though, from a practical perspective of what I've seen that's really helped again, that , uh, continuum of parents that are different than the strongest parents that we have. We are the cream of the crop here with Robin , Angela, and other parents , um, to be able to do this. But other , uh, parents have really said that one of the defining moments , um, to make that shift is for them and their child to see mentors , to have mentors, whether it be other people that are blind, which is what Rob is doing in terms of bringing , you know, being out in the community and sharing their daughter and what is possible. And then for the individual child, student, young, adult, whoever they are, to be able to see success through a mentor that is, that they can identify with. And I've seen unbelievable things go on when it comes to that. I ,
Melisa Matthews:What is one thing you wish society knew or understood better as you advocate for your child, your grandchild, or a family we work with outside of the home?
Angela Baldwin:This is Angela. Um, having a person with a disability in your family opens up your consciousness in different ways. Um, for me, I've become aware of my prejudices and I feel them melting away. And what I would hope to see would be that others would come to the understanding that just because they encounter someone with a disability, and it may be a visual impairment or other, do not make assumptions about that person. Do not think you've got that person figured out that you, that maybe you think their , their cognition is, is not at the same level as yours, or at the same level of typical children of that age. You may be completely wrong. You're looking at somebody and you're making an evaluation based on a prejudice. And I, my hope, and I I sincerely hope this for my grandchild, is that people will give her a chance that they won't just look at her and write her off. Um , I know that happens and , um, that would be my hope for her as she grows up and, you know, becomes a contributing member of society.
Rob Harris:This is Rob and I , I wish that society would understand and come to grips that inclusion isn't only about physical accommodations. And and for our area, a lot of times it's just about attitudes. And whether that's an attitude of low expectation, like Angela said, and just the , the pity card that often is used. And I, I I say that gently 'cause I, I, we don't mind it <laugh> , but it's at the same time, it's sometimes just attitudes of low expectations. And, and we've, we've broken barriers. My daughter has broken barriers , um, all of her life and, and for us , uh, that's not often seen the journey. They, they just see her at that in a certain moment. Um, but they don't know what it took for her to get to that part. And I do. And so at first I kind of was upset that folks didn't get it. And, you know, I'd walk into a meeting or a room or a setting or a , a , you know, a school setting and I had to start over and I had to explain everything from the beginning. Um, and, and sometimes that's frustrating for us. But I also had to come to the realization, kind of as the Jan is talking about from the professional component, I had to come to the realization that I was explaining things to everybody and because they didn't know the same that I didn't know when I started my journey. And so I, I just want the attitudes of low expectations to kind of be set aside a lot of the time. And that while you may not have seen this done yet, sit by the side and watch us do it because we are doing it.
Jana Villemez:This is Janet . I , um, I just love what Rob and Angela are saying because I believe that the reality is we need to presume competence and we need to understand that , um, what that really means is let's start high. Let's first say "what can they do?" "What are their strengths?" And I believe that it's about not about professionals talking as much as listening and understanding and taking the family perspective into account to what it is that they're trying to do too, because it matters. And , um, uh, I think that alone would go far, have a conversation, listen to the family and how does that impact what they have been taught and how can they alter what they're doing because the of the lens of the family is, and their lifespan of the family is gonna impact that child more than anything and anybody else. So let's listen to 'em.
Melisa Matthews:What is one hope you have for your child, your grandchild or family you work for as they advocate in their future?
Angela Baldwin:This is Angela. My most sincere hope is that my grandchild will be able to realize her full potential, and probably any grandparent or parent will say that for their child, no matter who they are. But I foresee the barriers and I, I think it will present difficulties and challenges along the way. And , um, I, I think we're strong. I, I think we all are prepared to overcome these challenges to , we have to do it for her to make sure that, as I said, that she can really fully realize her potential. And she's got a lot of potential.
Rob Harris:This is Rob. Um, in my hope for, for my daughter is that she continues to grow , um, as a confident individual as , but that she knows her worth , uh, and that she can advocate not just for herself, but for others as well. And, you know, her actions so far have led to, you know, others realizing that they have space that they, they can contribute as well. And , um, I really hope that she can impact the change that's needed not only here locally, but statewide, nationwide, worldwide. Um, you know, as, as she's already demonstrated that she has just in a short period of time that she's been doing it. So , um, my hope is that she carries that work on throughout her life and, and shows that she's , uh, she's got a lot of value for the world
Jana Villemez:And she does. Robert , this is Jana. She does everybody in this room. Uh, we all want that, right? We all want that. And then there's this other part that I can't help , uh, to lend this perspective is for the number of families that I've talked to in terms of talking about what is it that they would want for their future. The universal idea is really that whatever brings them joy. So however that looks, if they've got the joy that it that comes with it, we should all be happy. We should, we really should.
Melisa Matthews:Thank you all so much for being here tonight and sharing and helping me lead this discussion. Thank you.
Angela Baldwin:Thank you for having us.
Jana Villemez:Thank you.
Rob Harris:It's an honor to be here. Thanks for having me.
Melisa Matthews:Thank you so much, Sara. I'm turning it back over to you.
Sara Brown:Thanks so much, Melisa. I've put links in the show notes about the connect center , self-advocacy and more. Also, if you have a podcast topic, I want to know, so send it my way. Email me at changemakers@aph.org. That's changemakers@aph.org. And as always, be sure to look for ways you can be a changemaker this week.