Date
January 6, 2021
Time
28 minutes
Category
Amplify Inclusion Podcast
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Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.
Meet two local leaders working to advance inclusion through both their professional careers and volunteer advocacy efforts. Hear how mindset plays a role in their work, from inclusive classrooms to inclusive board rooms, and gain insight from their personal stories. Listen now or view the full transcript below.
Guests:
This episode was produced by Aspire Inclusive Solutions and engineered, edited and mixed by Subframe Sound with music courtesy of Nealle DiPaolo.
00:00:00 Clare
Welcome to Amplify Inclusion. I’m Clare from Aspire. Thanks for joining us for Season 2 as we continue to share real stories and conversations about the power and importance of disability inclusion. If this is your first time listening, Aspire is a non-profit organization that envisions a community where people of all abilities live, learn, and grow together. Across each of our innovative programs, you’ll find a common thread- the idea that inclusion is more than a simple act. It’s a mindset that should lead us in our everyday approach to planning and preparing with others in mind. The current circumstances have pushed us to rethink how we share our vision, and we’re choosing to utilize this moment to connect with you in a new way. We hope this will help you get to know Aspire and what inclusion means to us. We believe that mindset is a foundational aspect of inclusion. Our mindset impacts our actions, our interactions and the way we influence others around us. To emphasize this point, we’ve committed our second season to understanding how and why mindset matters. In this series we hear from various partners and professionals who are advocating for inclusion, some of whom identify as having a disability and some who do not. Throughout our discussions, a clear pattern emerged – not only is mindset critical, but there are two mindset-forming action steps we can all practice: 1) listening to stories and 2) engaging in conversations. Our first two episodes feature two local leaders…
00:01:45 Evelyn
I am Evelyn Polk Green. I am the Immediate past president of the Attention Deficit Disorder Association, as well actually as Children and Adults with Attention Deficit Disorder (CHADD), and I also work for Chicago Public Schools in the Office of Diverse Learners Supports and Services as an administrator.
00:02:04 Risa
I’m Risa Jaz Rifkind and I am the Director of Civic Engagement, and Marketing at ADA 25 Advancing Leadership. I also serve as a Co-chair for the Chicago Cultural Accessibility Consortium, or CCAC for short.
00:02:24 Clare
Between their professional careers and volunteer advocacy, Evelyn & Risa are focusing on inclusion and access from classrooms to boardrooms and beyond. First, I asked them to help me define an inclusive mindset…
00:02:38 Evelyn
To define what an inclusive mindset looks like, it really is about seeing people as people. It is about opening your mind and letting down stereotypes and assumptions about what people are capable or not capable of doing. So it really is about opening up and looking at possibility. I think being honest with yourself and asking yourself hard questions. Like “why did I say that?” “Why did I react that way to that person?” “What does that say about my own stereotypes and what I think about what people are capable of doing?” “Do I really think that people can and should be included everywhere? And if not, what’s stopping me from feeling that way?”
00:03:27 Risa
An inclusive mindset to me means that I am always continuing to learn and develop. Because I know what I know. It is also my responsibility to know what I don’t know or at least put forward the question. So what I mean by that practically is that when I am in a meeting, I am always looking at okay now that I am at the table, now that I am being represented, who isn’t here? And how do I look at bringing in those voices and those perspectives? And to me, having an inclusive mindset is really an individual responsibility and a collective responsibility as well. I think it’s always questioning who is missing, who is here, how are these decisions being made? And I think that’s, it’s a work-in progress to be an inclusive mindset. It is not like a box that I can just check, you know, and say I’m done now.
00:04:31 Evelyn
Oh, and we know the research tells us what makes a difference in how much folks are included and fully integrated into our society is about mindset. That’s probably the biggest barrier to making those things happen. So I think it makes a huge difference. I think it makes the difference. Once we have that inclusive mindset, then we can make anything happen. Yes, you need to have skills and strategies and all that- we can teach me that and that can come, but for me, I think mindset is 90% of what needs to happen before people are fully included.
00:05:09 Risa
Mindset matter because if we are not approaching something with the right information, the right framework, we won’t be successful in its outcome. So we need to start somewhere and we need to start properly. And I think what I mean by starting properly is asking key questions and really looking at “what do I know? What do I not know? What do I know I need to know? And who can- who can I learn from? I also think mindset matters too, because if we are committed to something, we will find a way to make it happen. Mindset to me, translates to commitment. So how we make that path to making something happen, whether it be finding the money in the budget, having our mindset reflected in our budget, in our work, you know. It’s almost a value system to check back on. I believe that inclusive mindset should be everyone’s work. If someone is wondering if they have an inclusive mindset, I would say that if you were asking yourself that question that is a start. You know, if you- if nothing else, that is a start. That is an opportunity to just be real with yourself and do an internal reflection and evaluation of like, have I done what I should be doing in my various moments in life, whether at work, outside of work, to make sure that, you know, what I’m doing is inclusive. And if its not, then now is the time to change. Now it is my responsibility to learn more and to identify resources and then connect with people and organizations who can support my development.
00:06:59 Evelyn
I just believe so strongly in stories. I think real life stories with real life people are what make the difference. When people hear stories about people’s real life experiences and how it’s made a difference, that’s one of the major, I think, triggers for change for a lot of people. But I think having genuine conversations and being willing to open up and ask other folks about their experiences is one of the ways that you can get to those stories and find out and learn.
00:07:30 Clare
Real stories from real people are what trigger change. Taking time to learn about perspectives that are different from our own is a first step in deepening our understanding of inclusion. So now, we’ll hear Evelyn and Risa share more about their personal journeys. First, here’s Risa…
00:07:49 Risa
I am a woman of color with a disability, I was born with my disability. And so, you know, I think from a very early age, I was always aware of disability accessibility or lack thereof, and inclusion, whether it be related to one of my many identities including disability or not. So the focus of my work I consider a privilege, cause its deeply personal to me. And at Advancing Leadership, our vision is that people with disabilities will lead with power and influence. And so the nature of my work is really supporting our members and their leadership goals and making those connections for our members to advance in their civic or professional lives and in their leadership goals. And then similarly, my passion comes out in my work with CCAC on a volunteer level in making sure that arts and cultural organizations are empowered to become more accessible to visitors with disabilities. So my disability is a specific type of dwarfism, the second most common form of dwarfism and I grew up knowing that I was smaller than everyone else. I grew up knowing that there were things I did differently; not things I didn’t do but things I did differently. I was always creative. It was always climbing. I was always figuring out how I was able to reach something or get something done and or just figure out how to play with my friends. So I was born days after the Americans with Disabilities Act was signed into law. So I did grow up knowing about the law, even though I was the only one in my family who had dwarfism, my family made sure that I knew about the ADA and in that way, I was empowered to know that I have the right to go to school, to get a job, to live where I wanted to, so I grew up with those expectations in mind, but here we are thirty years later and we’re still not close to meeting the expectations of the law. So there were many many experiences where I just did not have the services that I should have had. So I went to school and the building was not wheelchair-accessible. I went to restaurants and even visiting Broadway at some point early on in my life, it was not accessible. And so there were moments where we made it work, cause I was a kid and there was different, you know, opportunities as a kid to be supported by your parents, and your family but those moments if they happened today sometimes now I choose not to go somewhere if I know it’s not accessible. So, you know, I think that having moments in my upbringing in my childhood where you know, they were moments where I definitely was like it shouldn’t be this way. Why is it this way? Led me down the path of having the type of professional life I have now. You know, working in fields in which on a very systemic level is questioning why and how these things work the way they do, and most often the answer is because people with disabilities were really not part of making a framework for the way in which our society currently operates. So that’s why I believe it’s so important to increase the representation of leaders with disabilities.
Growing up, there was space to talk about my disability, there was you know, and, my parents did make it a point to make me aware and make themselves aware of, too, the ADA, the Americans with Disabilities Act. My younger brother, I have one sibling, also knew about it. He also knew what it meant when I in moments when I’m using a manual wheelchair that he would have to push me and figure out where the accessible entrance was. Like it was just as much a part of my childhood as it was a part of his, but it was a family kind of experience, it was a unit experience if you will. But my family also totally understood and supported making sure I had a network and community of people who had similar experiences. My parents made sure we were part of a Little People of America, which is a national organization that supports and connects others with dwarfism across the country and really internationally at this point. And so I grew up attending LPA- Little People of America- events and you know, having friends who were my age who also had dwarfism was really imperative to really explore my own identity. But then also seeing and connecting with those who were older than I was, and seeing them go out and seeing the next steps in life being achieved by people who looked like me, who talked like me, who walked like me was really crucial because it just cemented what I was being told that like no, you’re going to go to college, you’re going to go to work, you’re going to have a life, you’re going to live how you want to live. And so I saw people doing that, so I never questioned it. I knew that it was possible.
00:13:27 Clare
Risa’s illustrating how environmental influences significantly impact the way we view our selves and the world around us, which is reinforced further in the story we’ll hear next. I asked Risa if she could recall a specific moment in time when she noticed her own mindset shift.
00:13:45 Risa
The moment my path was more clearly defined and my passion made me motivated to translate passions and interests into a career- and there actually was a moment. So when I was in college at John Hopkins University, I received a grant to do independent research. And at the time, I really did not think that I was going to go into disability work at all. But I was doing a research project around international accessibility. I was looking at accessibility of seven different cities in different countries. And so I was traveling over the summer before my last year of college to do that assessment. And it was really an amazing experience, but there is a moment when I was flying back home and it was at the end of the whole trip. I was traveling alone. It was a very intense trip for, I think a 21 year old to take on her own, but I was determined to do it. And on the way home from Seoul getting ready for my 17 hour flight back to New York, it was like, one of many times in that whole trip where there was a huge debacle and ordeal about the airline taking my electric scooter that I use for getting around and I use to live independently and to travel independently. I relied on a scooter. And there were many times on the trip when the airlines I was using- there was some kind of problem. They didn’t want to let me take it all the way to gate. They didn’t want to, you know, take it at all. I was gonna have to book a new trip. But I never had the experience of like being straight up told “we’re going to take your scooter from you now when you’re just getting to the airport and you may or may not see it when you land.” And being 17 hours away on a plane from my home it was, you know, it was a very traumatic experience because I didn’t know if I would be able to have my independence. How was I going to get my luggage? And so I just got on the plane and hoped that I would land with all of my things. And I was just looking out the plane window and I was like, “all right, well, I guess I have my career ahead of me.” So it was you know, on that 17 hour trip home from Seoul, I was just thinking about how angry and sad and terrified and traumatized I had been from that whole experience, and how I was going to change it. And so that began my path for what would ultimately lead me to where I am today. For me, the spaces in which I can be my true self are newer spaces. Because even though I‘ve attended and been part of other larger disability community events and networks and been attached to organization for a long time now, you know, I think there’s always some part of me that I feel like hasn’t really been able to be open in those spaces. I think the newer spaces that we are creating at Advancing Leadership, that other organizations are creating that really intentionally bring forward the opportunity to be intersectional is new. And so I think that those experiences are just starting to happen in the last couple of years. And I think that this is something that a lot of people probably with disabilities have experienced. So, you know, I think that we create spaces now with that in mind. So created by the people who’re meant to be in those spaces. Represented by people who are meant to be in those spaces, whether that be at a staffing level, a participation level, a speaker level, and everything in between. So, you know, I wish I could say it’s been my whole life but it hasn’t.
If I could go back and share some words of motivation with my younger self, it’s that you’re going to go into disability work, but it’s going to be really cool. Because what I do at work, moves away from the traditional focus on being a service provider. We are not a direct service organization. We are looking at leadership and so I would say: get ready for changing the way in which leaders with disabilities see themselves, and then most important the kind of opportunities we’ll bring forward.
00:18:31 Clare
And now here’s Evelyn…
00:18:32 Evelyn
In terms of my professional role with Chicago Public Schools, one of the things that we work to do is to really make sure that young children with disabilities are included in classrooms, like every other child. Whether it’s in childcare or in our Public School classrooms, that’s a huge part of my work world is working with teachers and administrators and families to make that happen. As for the volunteer work and the other kind of work that I do around advocacy, it’s smoothing the way and eliminating stigma again, especially around, you know, mental health and hidden disabilities across the lifespan for folks. I’m a proud adult with ADHD and I was not diagnosed until I was an adult. But I can remember feeling so different from the rest of the world as a kid, because of the challenges that I faced as a result of my ADHD and how I always felt like an outsider and how I never quite fit in. I was offbeat from everybody else, so what everybody else was doing. And you know, I feel fortunate because I had enough opportunities that I was able to be really successful, actually, all the way until I hit college and hit the brick wall because suddenly I didn’t have those kind of supports and scaffolding that I had had. So I did not discover my own ADHD and so still still struggled with it. I was like in my early forties when I was officially diagnosed, and it was because of my children’s diagnoses. So I have two adult sons who also have ADHD. I mean I kind of realized right away when my child, when my son was diagnosed at age seven and when I learned about his diagnosis, I understood that- wow, okay, so this is me at that age. It manifested itself differently in between the two of us, but when I learned about the characteristics I was like “oh, yeah, so that was my coping skill- I was the teacher’s pet, so I wouldn’t have to sit still all day long. So I got through my work so I could erase the board and go on errands and that.” You know, so I figured out how I managed to cope and learned kind of more about myself. But it’s still painful thinking about how out of step I felt and how if only, one- that we had paid attention to the fact that those kind of hidden disabilities occur, and they don’t just occur with kids who aren’t doing well in school, cause I always did well in school, but that doesn’t mean that they’re not still challenged. And because of my own kids, I was just determined and probably because the way I was raised with my brother. I come from a family where my younger brother is disabled. And so, it has been a part of my family forever and never felt different because it was what it was. And now that I know what I know and am working in this field, I feel incredibly fortunate that I had the parents and family that I did because it never felt different. He had, when he was younger, a major speech impediment. He walked with braces and crutches and didn’t walk for a long time after he was first born. I can remember going to physical therapy with him, you know, had a ton of operations. But it never- he was never not normal. He was expected to do the same things that I was. But I can remember distinctly, he was probably four, I was probably six, and my mother was doing laundry or something and we like broke a vase or something in the living room goofing off doing something we should have been doing, and I just I don’t know why this sticks in my mind, but he got yelled at and got the same punishment that I did. It was no different and I think the reason it sticks out to me so much is he started school before IDEA was a thing but he was in a school that had a lot of other kids with mostly physical disabilities. And there was some of his classmates that did not have the benefit of great parents like ours who didn’t function out in society, who were considered different, who were coddled, who you know, just didn’t get the benefit of being able to live a normal life. One friend in particular he had, their family coddled her so much that she never got a chance to be like any other kid. So it was always an emphasis on what she couldn’t do, not on what she could do. And that always stuck with me. She you know, they were always concerned about “oh she you know, she can’t go outside and play with the other kids.” My brother was outside with us every day. So I just think it’s so important that we start from a very young age normalizing folks with disabilities being part of our society. And we don’t need to normalize it for them as much as we need to normalize it for everybody else and make other folks understand and be comfortable with it.
I definitely one hundred percent feel like my experiences as a kid and in my family helped pave the way for you know, the experiences I had later as an adult and as a parent and as a professional. I would say the friends on our block that accepted that my brother was just like everybody else- that made a difference for me.
00:23:57 Clare
Evelyn’s highlighted the experience of disability as it relates to both an individual and an entire family unit – which echoes some of the ideas shared in the previous story. I asked Evelyn if she could recall any specific moments when she noticed changes in her own mindset.
00:24:15 Evelyn
I’m surprised by low expectations that people have for folks with disabilities. That disturbs me greatly that that our expectations for their success and their expectations for us and how the world can accept them is very low. People often don’t exhibit it overtly, but you can tell by their actions and the words that they say, what they’re really thinking. I can remember when I first realized that it didn’t mean that folks were
purposely being bad or stubborn- it’s that they thought what they were doing was really the right thing. That was a real “aha moment” for me. Is that it allowed me to be patient and try to find a way to work around that with people and help them get to the mindset where I think they should be in terms of understanding that you can be much more supportive and helpful and provide more opportunities. So trying to help people get to that spot is where I spend a lot of my time now. Trying to you know, a lot of our trainings are I find myself trying to convince people why it’s important. Not that they were wrong, but it’s time to evolve to a different mindset about how we work especially in schools. So this is interesting because when I think about it, I am only ever really comfortable when I’m with another group of adults with ADHD. When I know that I’m with people that get it. When I know I’m with people that aren’t going to shame me cause I lost my keys for the 99th time or did whatever thing that I did. So I still feel not comfortable in a typical group. You know, I find myself monitoring and policing my own thoughts and actions and words if I’m not in a group of other adults with ADHD or groups of other people who live and love with folks with ADHD, who know them and know that that it’s okay. And so that I guess that’s telling that’s something that with all that I’ve done and know and experienced, that even for me personally, I’m not sure that I’ve ever fully feel like I am comfortable. I’m not necessarily comfortable in the group. I would tell my younger self to be confident to be to have more self-confidence in in what I was doing and to understand it’s okay to ask questions and it’s okay to seek answers and not assume you know everything. So I think understanding that all of us have a role to play in creating inclusive spaces, whether it’s your specialty or whatever it is that you do or wherever it is that you fit in- everybody has a role in creating inclusive spaces for people.
00:27:11 Clare
I’d like to thank Risa & Evelyn for sharing their stories with us. Next time, they’ll join me again for a group conversation about how productive dialogue can move inclusion forward. Until then, stay connected with us at aspirechicago.com – and be a part of the inclusive movement by rating and subscribing to Amplify Inclusion. Thanks for joining us! This episode was produced by the Inclusive Solutions team and co-produced and engineered by Subframe Sound.
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