Sarah Goldman is the Director of Administration and Youth Initiatives at the Florida Independent Living Council. Having previously worked as a legislative aid and being a voice for people with disabilities, she talks about her experience and journey in advocacy. Sarah unpacks what it takes to be an advocate for people with disabilities, the challenges she’s faced and how its helped to shape her into the best version of herself so that she can better serve others. Sarah provides us with a lens into what its like to be young with a disability. She talks about how having a disability has given her a strong foundation for resiliency, the ability to adapt, and having an open mind. Sarah is an advocate for youth leadership and talks discusses the importance for self-advocacy for people with disabilities at a younger age.
To learn more about The Youth Leadership Forum and how to apply, visit: https://www.floridacils.org/youth-leadership-forum
SPEAKERS: Sarah Goldman, Tony Delisle
Tony Delisle 00:01
Hello listeners and welcome to another edition of the independent life podcast. Today, we bring you Sarah Goldman, she’s director for administration and youth initiatives at the Florida Independent Living Council. I refer you to a previous episode where we had Beth Myers, the director of the Florida Independent Living Council, who really helped to explain to us what the Florida Independent Living Council is and why it matters. Sarah is also someone who’s in charge of our youth leadership forum, a one week activity that occurs in our Capitol in Tallahassee each summer. And she explains a lot about what those initiatives and services are all about. But what Sarah really brings to the table is is her experience in advocacy, she worked in the legislature here as a legislative aide in Tallahassee, and has done phenomenal work and being a voice for people with disabilities, and a young voice for people with disabilities. In this episode, Sara not only talks about her professional experiences, but really unpacks what it takes to be an advocate for people with disabilities, the challenges that she’s come across in how they’ve helped to propel her into a better person, and some of the continuing challenges that she faces and what she’s working through to be that better version of herself so that she can serve better. She also really gives us an important lens into what it’s like to be someone young, with a disability in school, also looking towards transitioning out of school and to what life will look like afterwards. This is really where she’s putting a lot of her professional and personal inspiration, time and talents into and for good reason. When you hear this, being someone that was in high school, and now has transitioned out of it and you know, has faced many of the challenges that she’s faced, she is so eager to help others that are in similar circumstances that she was in to really impart upon them a lot of the wisdom that she has just a really caring kind person that has a lot of insight and wisdom beyond her years, and just very excited about her, her place in this young leadership that is really flourishing, and in the Independent Living network and movement. So without further ado, we bring you Sarah Goldman, from the Florida Independent Living Council. Enjoy. Sarah, it’s so nice to have you on the show. Thank you so much for joining us today.
Sarah Goldman 02:46
Thank you for having me.
Tony Delisle 02:48
It’s my pleasure. And I am somebody who has heard your name long before I met you in circles for positive reasons. And I’ve been really delighted as you’ve come on board to the Florida Independent Living Council, as a new employee and staff and person that really working for the Independent Living cause. So excited to have you a part of the Independent Living network and on the team. So as somebody that has seen you from afar, and is really kind of been impacted in certain ways by what you’ve been able to influence, I want you to tell people who don’t know who you are a little bit about your story on how disability has shaped your life, both personally and professionally.
Sarah Goldman 03:35
Sure, yeah. Thanks so much, Tony. I’m super excited to be here. So I, like he said recently came on board with the Florida Independent Living Council. And so my role specifically there is director of youth initiatives and administration. And so prior to that, I had a career in the legislature for about five years. And I grew up with cerebral palsy. So what cerebral palsy is, is, all four of my limbs are affected, they’re very stiff, and I need to use a wheelchair, and a walker to get around and also need help with activities of daily living, you know, getting dressed, getting in and out of bed, taking a shower. And so with that, you know, I got my bachelor’s and master’s in social work. I knew that after doctors told me growing up a long list of things that I would never be able to do and having to fight through all these barriers, that I wanted to be an advocate for people with disabilities. So when social work, I knew that I wanted to be that influence to make sure that other people, future generations did not have to experience some of the things that I went through growing up.
Tony Delisle 04:44
So let’s go there. What were some of the things that you did experience while you were growing up that you’re now trying to help people as they go through what perhaps you are experiencing as you grew up?
Sarah Goldman 04:57
Yeah, you know, and I was mainstreamed into school growing up. So you know, when you’re in the public school system, there’s great accommodations, I had everything that I needed, right there, the school system was wonderful. But what happens after high school, you know, what happens, then? There’s no roadmap for a transition. And there’s really a big lack of transition services. You know, my parents were always my biggest advocate, and my mom was my caregiver full time, growing up, but I knew that I wanted to go away to college, just like all my friends, but needing the personal care help, that was a big roadblock that I hit, because I needed to use Medicaid to pay for personal care assistance. And what happened was Medicaid decided that they were going to deny all my care hours, and they said, going away to college was a convenience, not a necessity. Yeah, so we had to go through a series of hearings, to essentially prove you know why I deserve to have care. And doctors had to get on the phone and explain to these officials, you know, look, Sarah can’t open a water bottle. And if she can’t drink, she’s gonna get dehydrated. And if she can’t go to the bathroom, she’s gonna get a urinary tract infection. And so it’s just this endless cycle of me having to prove you know, why my care was so important, and deemed worthy. And it continued, throughout college, when I turned 21, I aged out of the children’s Medicaid system. So midnight of my 21st birthday, senior year of college, my services were completely cut off, and we had to declare a crisis, I was on the waiting list at the time for the adult Medicaid waiver program. But being two hours from home and not having the caregiver assistance, you know, I’m so lucky to be able to get my services and, and graduate with my bachelor’s degree. But this was me learning, really learning for the first time how to be an advocate for myself, you know, Mom and Dad were there, but they couldn’t be my advocate. And I had to essentially learn how to do it for myself.
Tony Delisle 07:04
Wow, I can’t imagine just the emotional impact that denial of what you should have would have on myself, and then to have to march on and really fight for that. What did that do to you emotionally? As you were going through this, this path of having to really prove yourself, advocate for yourself? What did that do to you emotionally?
Sarah Goldman 07:31
Its draining, I mean, still, to this day, I would love to get into employment a little bit and talk about how again, again, you know, you’re impacted with your caregiver services when you’re employed, but it’s every transitional phase in your life that you have to consistently prove, hey, I’m a human, and I want to make a difference in this world, I have a voice and I have a purpose. Like, let me be a productive member of society, like, just on a daily basis, it can be so exhausting, but you know, I think as a positive spin to that it’s made me more resilient. I feel like it’s made me way more open minded to other people and the challenges that they go through. It’s taught me how to adapt almost anything, right? So there’s both positive qualities but also most days it’s usually exhausting.
Tony Delisle 08:20
And that’s where I wanted to take the next leading question was, you know, obviously very emotionally draining and tough but what did it also that lead you to that was a value or virtue and you’re saying adaptability and resiliency and having an open mind. How did that process get you to that place of embracing those those virtues and values? How did you land and being able to really embrace those kinds of things during times that were very challenging?
Sarah Goldman 08:47
Yeah, I mean, I people have always told me you know, you have such a fighter spirit and I think that that really goes back to the parents that I had growing up because they were the ones that fought for me. You know, my parents never said you know what, Sarah you can’t do something like if there was an obstacle, we found a way to overcome it and to find a way around it and so I wanted to go away to college, it was never a no you, you should stay closer to home it was if you want to go and you have the care that you need and the support and the accommodation to go like we want you to fly the coop. So I really think that that’s where it came from. And if we ever did face a challenge as a family, we together were able to bounce back and keep pushing forward.
Tony Delisle 09:31
I think we’re touching around an edge here that’s pretty important and really trying to instill work with youth and leadership is the parent interaction of the Guardians or whoever might be in the place of that for youth with disabilities. And so I can also see some parents being very protective and for good you know, perhaps nature reasons, you know, wanting to have their sons or daughters closer scared sent off to school might be various thing, letting go of control, like So what was it about your parents that you think allowed them to be in this place that really empowered you and it was really led you to you really hitting on and living independently here so. So I want to kind of you to talk about what what is it about them that other parents like myself can learn from to be the best parents that we can, you know, if we have children that we’re raising for that have disabilities?
Sarah Goldman 10:28
Yeah, I mean, I really think it’s knowing and trusting your child. I mean, I lived closer to home when I came back from college. So when I was in college, I was two hours away from home. And then I took a job about an hour away from home for the last four years before moving up here to Tallahassee. And so I think, being closer to home, you know, my parents were still very involved, my mom would come down occasionally, and, you know, help meal prep for me, or she would help clean and just do some things that were helpful that my caregivers didn’t have to do. But once she saw that, I was able to do those things independently without her assistance. I think it built her courage for more. So I would encourage parents, you know, challenge your children to do things, even if you have, when I went away to college, I wasn’t washing my face. I mean, there was so many things that I knew that I could do for myself, I just was never challenged to do. And so really, it wasn’t until I was pushed to be an independent living spot that I had the courage and the ability to learn to do it for myself. So I could give any advice to parents should be empowering your children, help them find new ways of adapting now, so that they have the confidence to be able to do that on their own someday.
Tony Delisle 11:39
That’s great. So what would you then say to people in terms of what you have learned about who you are through growing up with a disability with your parents, moving out, going to school, advancing in your professional career, your personal life? Now I’m sure you know, being where you are, is constantly evolving as well. What are some of the things that you would want us to know about that you’re learning as you’re going through this path?
Sarah Goldman 12:12
Yeah, it’s been, it’s been a difficult path to navigate. I mean, day in and day out, you just deal with so many different types of people and interactions out in public. And I’m sure Tony, you can relate to this to just the way that people with disabilities are viewed in society. And so being a person with a disability, who’s almost 30 years old, you know, wanting to have that complete independence, to be able to have a job full time and live on my own, you face people every single day that doubt your abilities. They make assumptions about you. And it’s, it’s very interesting that the types of people that you interact with that come up to me in a store, and we’ll just say, oh, you’re such an inspiration, like good for you for being here. I mean, it’s, I don’t want to be an inspiration for being at the store. I mean, if you want to tell me, I’m an inspiration for my accomplishments, that’s one thing, but I just want to be a typical person, see me as a person, you know, not not something that’s just an everyday human task.
Tony Delisle 13:14
So what what is it that you then you do yourself to help yourself as best you can work with people that might be difficult throughout your day, like you’re saying, maybe putting you in a box or the labels or gee whiz, you’re so inspiring, because you’re just here doing these things? What is it that you do for yourself to help cope and communicate with difficult people?
Sarah Goldman 13:42
Yeah, I feel a lot of pressure a lot of times to have to educate people. Because I feel like if I’m not the one that’s educating them, then who is you know, I want to bring awareness to things that they say, or, but there are also days where I had a professor in college who called this a workshop, you know, giving people a workshop, there’s days that I don’t want to give them a workshop. So I’ll just let a comment slide. You know, I was in a store a couple of months ago, and a lady said, Man, I, you know, I really wish that I had a wheelchair for all the walking that I’m doing Christmas shopping. And in my head, you know, I’m like, I wish that I could have legs and walk. Yeah, but you know, that day, I just didn’t have energy to have to say that in a sassy voice to her. So I try to preserve my energy as much as I can, yet, however, also feel the need to really educate people when appropriate.
Tony Delisle 14:35
There’s some wisdom in that, you know, I guess, maybe it’s not as simple as pick your own battles. You’re kind of, yeah. But at the same time, we only have a certain finite amount of energy. We want to be smart about how we use that and really weigh out the return on investments and whether or not we’re going to weigh in on certain things or not, and hold it for herself and have the grace sometimes it takes more grace. And poise to not say something than to say something, especially in a way that probably won’t advance a conversation.
Sarah Goldman 15:07
Yeah, have you? I don’t know if you’re familiar with theory, have you heard about the Spoon Theory?
Tony Delisle 15:12
Tell me about it.
Sarah Goldman 15:13
So the Spoon Theory, I mostly came up with it for people with chronic illnesses and medical conditions. But every single day, a person has an allotment of spoons. And so different tasks require different amount of spoons to be used. So depending on you know, your disability, or even being, you know, not not disabled. You know, for me taking a shower might be two spoons, or having to help a caregiver, a meal prep for me might be one spoon, but you’re only having a number of spoons per day. So how do you navigate spoons for work, spoons for caregivers, spoons for your own personal care and sort of maintain your sanity at the same point?
Tony Delisle 15:51
I love your spoon analogy. And it reminds me of others that have talked about this in terms of portion that we have a certain portion, and how do we spend our portions wisely throughout the day and with others, and those kinds of things. Very much an energy conservation spending kind of equation that goes on with that, that’s really wise. It’s really wise. What are some of the things that you’ve learned about yourself that involves supporting other people with disabilities? You’ve talked about wanting to help people go through situations that you went through yourself? What is it that you’ve learned about yourself, and perhaps even others, as you’ve done some of that work?
Sarah Goldman 16:35
So I have learned, I mean, and I’m still learning about people that are different than myself, I mean, take cerebral palsy for an example. I mean, there’s so many different levels of cerebral palsy. And I think there’s almost this hierarchy in the disability world where I don’t even like to use the word high-functioning, but we’re labeled, you know, well, you are high functioning, and somebody is not high functioning. And I really don’t like that conception in our community, I think that we should, should all be equals, like, we’re all fighting for the same rights and the same equality. And so something I’ve learned is that not everybody is going to be able to have the same level of independence as other people. And so how do we make things more universally accessible for everybody, depending on their ability level?
Tony Delisle 17:22
I love that. Yeah, it’s a continuum of disabilities, and independent living, even can look different for different types of people, even with the same types of disabilities and support networks, it all can look a lot different and be very diverse. I like what you mentioned about hierarchies, I struggle with hierarchy. And for me, hierarchy is a fertile ground for the ego. Pride being, pride as a bad thing. I know sometimes people use pride as a good thing. But you know, pride being more egoic, or envy or jealousy, just by the nature of hierarchies, we seem to compare and contrast ourselves to one another, maybe favorably, where that’s where pride and ego maybe kind of kick in, but maybe unfavorably and then see ourselves as less than others. And maybe that’s fertile ground for, you know, envy and jealousy. So I really like how you’re identifying hierarchy as potentially an issue to really have to navigate in terms of how we see it and manifest in our daily lives. Organizations love hierarchies. It’s everywhere, in terms of trying to put people in those boxes and labels, like you said, so how do you manage that, like the almost, whether you want to or not, we’re, we’re put into a world where there seems to be some natural hierarchies. So how do you personally internalize that then to, you know, be able to work in a world that has hierarchy, but also somebody that sees it, perhaps, as you know, a place that has, you know, things to be cautious about?
Sarah Goldman 18:49
I find myself feeling guilty a lot of times for the privilege that I do have, you know, having cerebral palsy, because of my parents even got this a lot growing up. Well, my kids not like Sarah. I mean, my parents tried to find a support group. And a lot of the parents couldn’t relate to the things that my parents were struggling with, you know, trying to mainstream me in the school system, and they didn’t really have anybody to relate to. And so I often feel this sense of guilt of like, well, wow, you know, I get to work full time. And I’m so privileged to be able to have my Medicaid waiver services to be able to live independently. And because I know that people don’t have that. And so I think for me, it’s like, how do I not feel guilty, but also help advocate for people, because I have things that I need to be successful and live independently? How can I now use that gift to help people who need those resources and services?
Tony Delisle 19:43
So as you say that traditionally typically I look at guilt is like, maybe not useful, doesn’t serve me, etc, but almost in the way that you’re, you’re couching it there. It almost sounds like it’s something that’s really helping to propel you forward into serving others. Recognizing that not everybody has maybe the advantages or privileges that you do. And so is now seems to be from what you’re saying, like an impetus for why you serve. So can guilt serve us in terms of being better? in recognizing your privilege?
Sarah Goldman 20:19
Yeah. And I think, you know, rather than being somebody who is like, Wow, look at me, you know, look at all the things that I have, it’s, I want other people to be able to have the same experiences, I don’t want to be better than you, I, we’re all everybody with a disability, regardless of the disability that you have, we’re all fighting for accessibility, we’re all fighting for access to services, it doesn’t matter, you know, in the hierarchy, where you are, it doesn’t matter what level of functioning you have, we are all working together for the same common goal. And, you know, I just think that that’s something that we need to be reminded to reminded of, and how can I help feel that?
Tony Delisle 20:56
I love it unity through disability, we all have this space that we’re occupying. And we can really come together through this space to do more. And for me, I really resonates your, your, your motivation to serve others, because you have certain things going on in your life that others do not, I definitely feel a responsibility, that because I’ve got it, you know, this way, I’m now responsible for being a hand up for other people, so that they can benefit from some of the privileges or advantages that I have as well. So I really connect with you on that. That’s a huge one. So we were talking now more closely aligned with what you actually are doing to serve and give back because you do have some certain advantages in your life. So please talk to us about what you do at the Florida Independent Living Council, we did have Beth Meier director on one of our previous programs, and I encourage our listeners to go back and visit that episode, really great episode that really does unpack what film is all about. But I would you know if you can explain to us what you do in your role with FILC. And why it is so important.
Sarah Goldman 22:24
Yeah. So my role at FILC is to really oversee youth initiatives. And so the Florida Independent Living council oversees the tate plan for all the Centers for Independent Living across the state of Florida..
Tony Delisle 22:37
The State Plan for Independent Living, otherwise known as SPIL. Alphabet soup alert, I’ll interject here and there. Yeah, go ahead.
Sarah Goldman 22:44
I had to learn all the acronyms. CILs, SPILs those? Oh, gosh, yeah. So one area of our SPIL is directly correlated with youth. And so looking at, you know, how do we get youth connected to their Centers for Independent Living, because we know that the centers provide transitional services as a core service of independent living, but we’re seeing oftentimes that youth, as they’re transitioning are not being referred to the centers. So instead, they’re being referred to agencies like vocational rehab, or the agency for persons with disabilities, you know, and those agencies are great, they do great work, they just don’t do the unique things that Centers for Independent Living can do. So I’m trying to research right now, you know, how do we reach youth with disabilities in rural areas? How do we get them connected? And what are some of the barriers as to why youth with disabilities maybe aren’t being referred to a center. I know, I didn’t actually interact with the Center for Independent Living until I was graduating from college, and needed work incentives planning. And so a lot of the directors that I’ve talked to have said, Well, you know, on your journey, where did we miss you? Like where could be on your journey to find you and people like you? And I think that’s really what my role is to look at.
Tony Delisle 24:06
So know what to get into there. First, why are you so focused on youth with disabilities and transitions meaning coming, you know, out of high school and into post secondary life, everything leading up to it the moment of and afterwards, so so why youth why transitions?
Sarah Goldman 24:27
I think for me, that was the most pivotal point in my journey was transitioning out of high school, and then also transitioning into the workforce. So transition is where I faced the most barriers. And knowing all like we talked about earlier, how I’ve had to fight through so many things, wanting to be able to help serve the next generation and I wish I had a roadmap. I wish I had had a mentor that said, Hey Sarah, you know you need to apply for this service or you know, you can apply for this which will help you when you’re going off to college. I never had that, so how can I be a mentor not only to youth and help them sort of navigate those challenges, but also as a state? How do we provide a roadmap to them as to here’s what we can provide, depending on the agency. And here’s what the Centers for Independent Living can provide. That doesn’t exist, and it’s way overdue.
Tony Delisle 25:20
So as you talk about providing more opportunities, and the importance of that for youth with disabilities, as they’re in school, and saying that the Great question, how do we miss you? How is it until college, you found out what a Center for Independent Living is? So how can we make sure that students before they graduate high school? Get it, you know, touched by Centers for Independent Living, or at least know that it is a resource or an opportunity or service that’s out there? for them? How do we not miss other Sarahs that are coming down the pipeline?
Sarah Goldman 25:54
Yeah, I mean, I think starting in high school, you know, and this is something I know that Jane Johnson over at FACIL is working on with some legislators right now. And some transitional legislation for people with disabilities, is having the Centers for Independent Living, be a part of the transitional Individualized Education Plan meeting, you know, that final meeting, before a student exits from high school, and whatever capacity is next, having the centers there to provide a brochure or provide an overview of services, that alone would have been huge for me, but also at the university level, connecting with the Disability Resource Centers, providing workshops to them, again, having brochures in the lobbies, I never got to meet anybody from a center. And I was very involved with the Disability Resource Center on campus.
Tony Delisle 26:45
So you’re mentioning high school. And you know, I know our senators and some other senators have some things going on within the high schools. There’s also other high schools that we’d still want to reach and to get to, to let them know who we are to the daikon disseminate this opportunity and information to students and parents. We do come across some barriers into getting into the schools that were not currently in what have you seen as far as the barriers that are there in terms of reaching the schools to advertise or get the word out about what centers are and what we can offer students and parents? And what do you see the facilitators being those things that can get over some of the sad barriers that are there and preventing senators from getting into the schools?
Sarah Goldman 27:29
Yeah, right now, I mean, COVID has a lot to do with. I mean, I don’t want to say that that’s an excuse, but really everything is, is done in a different way, you know, transitional fairs, where agencies would come and be in a gymnasium, and have a table with their services, those things are not happening, or they’re being done in a virtual format, where parents aren’t getting the proper information to attend transitional affairs virtually. So conferences, you know, things that were happening at the school level, that would help individuals with disabilities, those big, exceptional student education conferences aren’t happening right now. And then it’s also the relationship and making sure that the relationship is formed, that people know who the contacts are in their area. And that’s constantly changing. And having a seat at the table. Some of the senators are really good about attending their local interagency groups. And so that’s helped a lot, you know, being able to be at the table and, and show what the senators are doing, not only in general, but specifically around youth and transition.
Tony Delisle 28:34
So when you say, interagency groups, correct me if I’m wrong, but these groups are part of school boards, local school boards that have interagency group that I think is a requirement for the organizational structure of school boards. I’m not sure that’s do Project 10, or whatever it might be, but I think there is a in there for many centers to try and network with their school is going through the school boards and being a part of that interagency network. Is that..?
Sarah Goldman 29:01
Right. Yeah. And there’s also, you know, the local agencies too. I know, down in Pinellas County, they have something called the PINKS, forget exactly what it stands for. But they have representatives from Boca rehab, that calm they have representatives from the Centers for Independent Living, and they also did a table parents attend, teachers attend. And it’s just a way to get updates on all the different agencies and what’s going on in that community.
Tony Delisle 29:27
That’s great. That seems to be one way to help facilitate the collaboration with schools, but I agree with COVID… reaching schools in you have to phone calls and electronic forms of communication, so much less response rates than going there physically making appointments, face to face, eyeballs and those kinds of things. Has there been any particular strategies that you’ve found or heard that might help to get around that challenge? They’re in a in a COVID environment?
Sarah Goldman 29:56
That’s something we’re still working on you know, an idea that I have and would like to pursue moving forward is doing some type of focus groups, you know, with not only parents, but also students that are transitioning out of high school or transitioning out of college and just asking them and surveying them, like, do you know what a Center for Independent Living is? Do you know what types of services they provide? And looking at that data across the state to see if that’s something that, where are we lacking? And where can we do more outreach?
Tony Delisle 30:25
I love idea.
Sarah Goldman 30:26
And what types of outreach.
Tony Delisle 30:27
…especially asking like, here’s some of the things we do, but what is it we’re not doing that could be useful? Exactly. I think one of the things that I asked myself is, you know, getting in more Centers for Independent Living through our recent state plan for Independent Living, SPIL, are definitely being charged with getting more involved and connected with our schools. And so as we align ourselves to do that, so I asked you the question we are, what do you see as being the barriers? And we’re what are some of the ways of getting around those barriers? It just seems to me that as we go through this learning curve, and doing this, we’re just going to have to really come together and share some of the stories that really works and doesn’t work. And I think you’re going directly to the students and to the parents, and hearing it from them could be a really good first way of identifying what those barriers are. But also what’s our niche here, you know, what is it that we would offer that’s not duplicative or unique and true? How benefits students and parents who are going through the transitions? What do you see being our unique lane and niche is Centers for Independent Living that we could be bringing to bear to benefit students and parents with disabilities?
Sarah Goldman 31:35
Yeah, absolutely. You know, I think I sort of see the center’s as this one stop shop, where you do information and referral at all levels. So you can do work incentives planning, you can do job coaching, or helping with resumes. So a person can just go to one place and get all of those things. But we’ve also seen with the youth coordinators from all the centers, across the state is that they’re doing a really great job of providing social outlets and opportunities for youth to come together even virtually. So whether that’s a cooking class, or one centers doing Tai Chi, I think having a place to not only get those services that they need, but also having a place where they can go and be social and form those friendships, with others with disabilities. I mean, no other agency can provide that unique niche.
Tony Delisle 32:23
Yeah, we found definitely, kind of the edutainment round yet with the social and getting together and really building opportunities for fellowship integrated with some skill building, awareness raising resource sharing to be a really good winning formula. I want to get your your take on this. So we do have involvement in our high schools and met as many centers do and have youth in youth and transitions is largely in our field defined as like 14 to 24 can be older and 30. In that area, depending on situations and circumstances. But what are your thoughts on getting in earlier? One of the things that I’ve seen is the transition that doesn’t get talked about as much in centers is the transition from elementary school to middle school, in some of the anecdotal personal experiences. And then in speaking with parents, and certainly students after they’ve graduated high school point to that time as a particularly challenging transition, where perhaps they were in an elementary school, and well supported, same class, sometimes same teacher throughout the day, was well known through the school, accepted, then off to middle school, where it’s a new school, more students from other schools are now integrated within there, their social network starts to shift and change the supports and regular people that were responsible for providing them aren’t there, it’s new people, new teacher every class, etc, etc. I wonder, is there a room for senators in your opinion, either in that transition, or in different places before high school that we need to be paying attention to?
Sarah Goldman 34:01
Yeah, I think middle School, the transition into middle school is rough for all the reasons that you mentioned. I also think it’s a really pivotal point in a person with a disability’s life in terms of their identity, their self esteem, their self confidence, I mean, a lot of bullying. In middle school, you see, a lot of cliques start to form and so as a person with a disability, you know, how do you have spaces to be able to talk about you know, well, I’m, I might be a little bit different. I have to do things differently. How do you help them form that identity? And also how do you start, I think we need to be starting self advocacy skills training at a way younger age, I did not start self advocating really until I was forced to at age 18. A little bit in high school, but I never spoke up for myself in middle school. If I needed extended time on a test. Even in eighth grade, I would just hand in my test empty because I didn’t want to have to speak up, I thought I was gonna say something wrong or I was gonna get trouble. And so teaching them as young as they can, how to speak up how to use their voice, and know what their rights and accommodations are.
Tony Delisle 35:08
So what recommendations would you have then, for schools, parents, and even teachers to help with students become more integrated and included with their peers during such a pivotal point, like, I’m still trying to find my identity, you know, and so this time in your life, our lives where we’re going, I can the tween ages, you’re our bodies are changing puberty, our minds ability to think abstract, and critical and our own self awareness and sense of self is kicking in and can be very confusing during these highly hormonal times. So, so help me navigate what recommendations then you have during just that natural challenge and seeking and understanding who we are with our fit into the world. And then adding in plus disability there what what can be really used to help integrate people with disabilities into this cohort or season in people’s lives, where it can be for anyone very, very, turns over your world, sometimes really trying to understand what’s going on to our bodies, our minds and our social networks.
Sarah Goldman 36:23
When I was in middle school, I just remember specifically the hardest experiences I had were when teachers sort of segregated me or made some type of bigger deal that I needed an accommodation or, like they pointed to the class that something was different about me, you know, I had a teacher one time that said, Oh, your walker’s taking up too much space, so I need to go put it in the hallway. Of course, that now points attention to everybody in the class is to Sarah’s walker, everybody look at Sarah. And so as educators, you know, how can you do activities that are inclusive for all learning abilities? How do you do things, if you’re doing a game in the classroom where, you know, for me, I was stuck sitting in a chair, and everybody was moving around the classroom. And then I felt insecure, because I couldn’t navigate the classroom like everybody else. And so really providing those universal learning accommodations, and those areas for students, really, I think, will help them not feel so I’m different. I’m different, something’s wrong with me. Because if you’re internalizing that, at that young age, versus somebody sort of including you in all aspects, I think it can make a really big difference in their self esteem and self confidence.
Tony Delisle 37:32
You know, and as you’re saying that I’m also trying to think about how we thread this needle between celebrating the fact that we are different with the Knights with the need to fit in, it almost seems like it there’s a tension there. How do we walk that? How do we thread that needle?
Sarah Goldman 37:51
The hardest thing for me is when people tell me, you know, oh, I totally forgot that you’re in a wheelchair. Because that was, in one hand, you’re like, wow, that’s such a compliment. I’m doing such a great job of blending into society. And like, yes, you know, that’s what I want. But at the same time, you’re just like, wait a minute. And, you know, it’s just this really conflicting thing, where it’s like, how do we show our needs, but also want to be integrated into the world just like everybody else. It’s very hard tension.
Tony Delisle 38:21
It’s a bit of a paradox in life seems to have paradoxes and they do things that seem to have these juxtapositions can coexist in many ways. I’m, I’m learning I’m finding, it’s very Daoistic, you know, to kind of think, you know, do nothing yet leave nothing undone, you know, these like paradigms that do and paradoxes that seem to exist in life, there seems to be something there where in my own personal life, I have wanted to be seen as somebody that is just like everybody else. And you know, just because, you know, I’m able to go to college and you know, have a job, I don’t need to be specifically praised for it, because I have a disability, and how that can, you know, be taken, as you know, something that is a slider annoying. But at the same time, there’s been times where, you know, I’ve had to work extra hard, putting in more hours, whether it’s academics or professional or my personal life, and almost want people to understand that it does take more, that it is a little maybe harder or different. And again, it seems that there is a paradox that exists there where Yeah, we don’t want to be seen as different. We do kind of want to blend in but at the same time, we want to identify as someone with a disability that does have these unique challenges, and I think it’s natural to want to be understood and felt by other people. So..
Sarah Goldman 39:46
Yeah, I agree with you.
Tony Delisle 39:48
How have you have you navigated that have you come across…?
Sarah Goldman 39:52
It’s a really like I said, it’s a tough tension for the same reasons and I agree with you. I think sometimes I just want somebody to validate like, you know, I understand your exhaustion, like it makes so much sense that you just moved four hours away from home and how to hire a team of seven caregivers and you know, all the things that go into that, starting a new job. I mean, it’s it’s a lot to have on your moving in general is a hard thing for anybody. But then when you have a disability to add in all the actual things that we have to consider throughout our days, I feel like that’s why it’s so nice to have a community of people with disabilities to be able to support and encourage and validate. But yeah, it’s it’s a tough tension.
Tony Delisle 40:33
So Sarah, as you talk about support and people to help, who have you had in your life, you’ve mentioned your parents, but who else in your life has been pretty integral in helping to you to propel yourself forward to be a better version of yourself and to go on to help to serve other people like who has been that inspire, you know, kind of person in your life, a fixture that has helped you succeed?
Sarah Goldman 40:59
Yeah, so when I was in high school, this was really my first exposure, I would say to a lot of individuals with disabilities, because I grew up up north and didn’t really see… the only person in a wheelchair in my school, really, the only a person with a visible disability in my school, and so I didn’t get a lot of exposure. We moved to Florida when I was 13. And I joined adaptive sports program. So Paralympic sports. And really, I mean, those coaches were phenomenal. They saw, you know, here I am not thinking much about myself at all, I can’t do this, I can’t do that. And they find a way to get me on the court holding a tennis racket, while navigating my power wheelchair or, you know, teach me how to swim across the pool for the first time without any flotation devices, like the empowerment there that they provided was critical for my development. And I think too a lot of professors that I had in my social work program, that was through the time that I was dealing with a lot of these caregiver challenges and trying to navigate my services, and having them put their time aside and say, you know, we’re here to help you fight and we want to help you fight, how can we support you? I mean, nobody had ever asked me that question. And in turn, showing me that I had a voice and that I could be an advocate for other people, and actually make a difference based on what I had gone through, I don’t think anybody quite empowered me the way that they did.
Tony Delisle 42:27
So I love that you’re using sports or physical activity as a means to get more confidence or that is so in my wheelhouse. I know, for me, the first adults that weren’t my parents were coaches of athletics. And there’s so much to learn about ourselves as we tried to new skills that we’re not able to do and to have coaches along the way to challenge you and to help you develop that. For me, it’s priceless, there’s so much that we can learn about ourselves in the world, through those kind of things. So when you you know, I talked about your professors and social work and wanting to, you know, be helpful and help you to find your voice. What is your voice?
Sarah Goldman 43:16
To me having a voice is knowing your calling, and being able to be… using your your specific purpose to make a difference in the world. And for everybody that can look different. I mean, everybody can speak to something, whether you’re an artist, you know, that’s you using your abilities, or, you know, being a news anchor, like that’s using your voice and a way that’s influencing communications. So mine just happens to be advocacy and wanting to mentor the next generation of youth. But to me, you know, knowing how to speak up for yourself, knowing how to speak up for your needs, is a part of using your voice and then feeling confident enough to use your voice to make a difference, and whenever you feel called to do.
Tony Delisle 43:57
Great. So that leads me then to when you’re working with youth who are trying to find their way into what’s my passion, what’s my purpose? I get that a lot. And you know, I have found, for me, there’s certain things that have helped me communicate with people who are searching and seeking to really find that. What do you find useful when working with youth who are seeking to learn more about well, who am I? What is my passion? What is my purpose? How do you help people walk through that very important line of questioning?
Sarah Goldman 44:35
Yeah, that is a big question. And I think for a lot of youth, having them sit down and help them maybe sort of even take like a Strengths Finder test. A lot of them don’t even believe that they have strengths at all. That’s where I was when I walked into, you know, Paralympic sports. I didn’t think I had much strength at all were strengths period. So showing them you know, here’s what you’re really good at. This is what you’re really good at. giving them opportunities to try those different things to see if they like it. And also really encouraging people, I think, for me to use the things that I’ve been through to help fuel your future. A lot of times we like to use the things that we’ve gone through to help make a difference in the world, and whatever capacity that looks like. And so I always like to encourage you to just sort of reflect on their story and reflect on their journey, and see where those pivotal points were, and maybe some things that they learned along the way.
Tony Delisle 45:29
I love it, you know, what are your experiences? What do you like, and then really articulating that in, like you said, a story. And I find that, you know, helping people tell their story can really be a path towards learning more about who they really are, and what they may, you know, have to contribute. So I also want to ask the question, how much of it is about learning more like you’re saying about those things, versus how much of it is about unlearning, what you may already think you know, or believe, or your attitudes or your mindset is about yourself in the world?
Sarah Goldman 46:06
Its both and I think that that’s where, you know, critical people like mentors come in. Because if you have somebody who gives you unconditional acceptance, that’s going to show you your strengths, that’s going to, you know, accommodate you in every way that is absolutely monumental for somebody with a disability, when you could just give them unconditional positive regard. I mean, I think a lot of the internalized ableism that I have, is often melted away when I am in an environment where I feel supported and welcomed. And so helping give that type of environment to younger, people with disabilities may actually help them sort of breathe a little bit easier to help unlearn some of those things and help them be their true self.
Tony Delisle 46:49
What are some of the things that you’ve had to unlearn yourself so that you can get closer to that full potential that you’re seeking to achieve in your life?
Sarah Goldman 46:57
Yeah, and we talked about this earlier, but just the need to constantly prove myself, you know, I had to feel like I had to have a 4.0 GPA in college and be involved in all these leadership activities. Because if I was smart, and I was integrated into clubs and activities, then people would not see my wheelchair, you know, they would see Sarah as a person. So that’s something that I’m continuing to slowly unlearn. And I don’t know if you ever feel this, Tony, but just the need to always be positive all the time and happy. Yeah, there’s that big stereotype that people with disabilities are brave, and they’re constantly overcoming their challenges. And if we’re not overcoming our challenges, are we bitter? Are we ungreatful and so when people tell me things like, Oh, you’re so happy all the time. You’re like smiling, you’re so strong. It’s like, thanks. Like, it’s like a backhanded compliment. It’s like, thank you. However, I’m sort of, like, it’s a lot of pressure to always have your life together. Yeah, we’re humans.
Tony Delisle 48:00
You know, and that strikes me is something that does hit home with me, um, for the most part, I do believe in having a inspired attitude is very important. And the positive and negative is a tough one. It’s kind of like I think it was Shakespeare says that nothing is negative or positive, but our opinion makes it so. And so I’ve been working on really trying to have opinions that doesn’t maybe have the negative upon it positive connotation in some ways. Because who knows when an experience that we’re having that feels negative ends up being a positive experience or this positive experience that we’re thinking we’re having ends up kind of being a negative one in Time will tell often in that sense. So I find a lot of wisdom in what you’re saying there about positive negative, interesting I came across an account of the Vietnam prison, the Hanoi Hilton I think they called it where John McCain was in but there was also another well known person in there James Stockdale and there’s real interesting accounts in history of how they survived and made it through and one of the things that they believe was the the people that survived these tortures and abusive situation were the people that weren’t necessarily the positive ones the positive ones like oh, we’re going to be out by Christmas Just you wait and see then Christmas would come and go and wait it’ll be the summer just keep positive, positive, positive. And after a while, a lot of them suffered really poor outcomes, you know, death even. And a lot of it was attributed to you know, having a rose colored unrealistic positive lens about things, versus the John McCains and the James Stockdales who were very much into surviving and pragmatic about it, and had this you know, kind of reasoning about themselves that really helped to lift themselves up in a way that was more realistic and still believe in in yourself. And so you know, I see some value in that in some ways that you know, you can’t just always be rose colored. At the same time for me to sustain my involvement in working with so many challenges that we have. I feel like I got it sometimes gravitate to something inspiring, or that has a lot of enthusiasm behind it, I’m steering clear of the word passion, on purpose. I feel like passion can be almost like something that can be positive, or seen as positive, but also can be some an energy that’s spinning our wheels, and can be very emotional and not sustainable, where I find inspiration and enthusiasm to be deeper and more sustainable. I don’t know if you’ve come across that either. But I’ve been very careful about using the word passion, and very intentional about inspiration and enthusiasm. Yeah, I definitely agree with that. Yeah. All right. Well, tell me, you know, what are what are some of the important like values or virtues that you’ve cultivated as a person that you may have not otherwise have gone so deep in? Had you not had a disability about who Sarah is?
Sarah Goldman 51:10
Yeah, I think really, the number one thing is just the fighter spirit. And just always being willing to acknowledge, like, Wow, you’ve been through all these things, and you’ve persevered. And because of that, you’ve bounced back and developed resilience. And I think that we need that to navigate the world, and just all forms and fashions of different things that happen to us. And so if I didn’t have a disability, I don’t know, if I would be as repent or as fighters spirit as I am. But I think that that’s probably the number one thing and like I said earlier, perspective taking, you know, I, I’m still learning a lot about myself and others with disabilities, but also others that are in different minority groups. And I think it’s just made me want to be a better person and a better advocate for people of all minorities, because we’re all fighting for equality. And if I didn’t have a disability, I would never recognize my privilege, but also when you’ve been oppressed, sort of gives you the empathy for others who are also dealing with oppression and other ways.
Tony Delisle 52:14
I’m wondering, is it useful for you at all to have, as you’re putting it in fighting terms, to have an underdog mentality going into it, it seems to have helped me in some ways, I’m interested if it has helped others, and I can better explain what I mean by underdog mentality is perhaps recognizing that the odds are against me succeeding, most people with my demographic makeup, you’re statistically don’t get to a certain place. So I feel like if you know, I’m able to aspire and achieve in those areas, you know, it’s gonna be like, like, almost like, got a chip on my shoulder, I suppose, without having that total negative attitude. But for me, in some ways, I feel like the expectations are almost lower. And that almost makes it like, yes, in a way less pressure, I suppose. But at the same time, I got a huge amount of inspiration to again, you know, kind of be the upsetter of the underdog, you know, kind of, I don’t know, does that does that resonate at all with you?
Sarah Goldman 53:15
Oh, yeah, definitely. Because I think my whole life people underestimated me. And the bar was set so low, you know, when I was transitioning into employment, I had a master’s degree. And I had case managers saying, Well, why don’t you just work part time? You know, why don’t you just apply for food stamps. And it was like, they didn’t want me to do anything with my life like a bar was they were actually encouraging me to stay on the system of welfare, rather than going out and being a taxpaying citizen and a contributing member of society. And so I think in society, the expectations are low. I, I think it’s almost for me, the expectations that I have placed on myself that are higher, because I feel the need to prove those people wrong. So I just got these unreasonably high standards for myself.
Tony Delisle 53:59
Underdog mentality. Yeah, that’s Yeah, yeah. Yeah, kind of where we could use it, perhaps, to our advantage into to be able to do that. So what is helps you to be resilient you when we talk about resiliency, that sounds like endurance and perseverance are baked into there. So imagining that the difficult times in your life that you’ve had personally or professionally, having to constantly go out and prove etc., what is really helped to fill your bucket in terms of being a resilient person?
Sarah Goldman 54:30
The spaces that I can breathe in the easiest, and I feel like those spaces are the places where I’m around other individuals with disabilities. It’s sort of like, you can’t explain it because it’s just, you don’t have to try to strive and prove and you’ll talk to somebody with a disability and explain your situation. And even if they haven’t gone through the exact same thing, they’ve gone through something similar, and so you don’t have to explain yourself. You don’t have to hide your insecurities or needs for accommodations. Like, you need to care attendant to cut your food, probably somebody else in the room does too. And it’s like you don’t have to look or feel different. And so getting to have ways to interact with others with disabilities and knowing that I can call them on days that I have really hard challenges or just need to vent about something that I’m trying to navigate, that my friends that don’t have disabilities necessarily can understand, has been really helpful for me to continue my momentum, because we’re all on this journey together. And we’re all just trying to encourage and push each other forward.
Tony Delisle 55:33
Connect and relate. So if we were going to connect and relate to what it’s like to be a student with a disability, we’ll pick High School sounds like an area that we seem to have the most experience with and understanding how would you describe to people what it’s like, especially nowadays, to be a student in high school with a disability, facing the transition in their life, to what is going to be like after high school?
Sarah Goldman 55:57
Yeah, so I’m going to do a shameless plug here for the youth leadership forum.
Tony Delisle 56:01
Please do, you know, let’s get into this.
Sarah Goldman 56:03
So the Youth Leadership Forum, you know, I’m lucky enough this year to be able to help direct the Florida program. And I actually attended that program when I was in high school. And that’s actually where I met a lot of these friends that I was just talking about, because they become lifelong friends and lifelong support, but getting to interact with other people with varying disabilities, it’s a five day program this year, it’s gonna be virtual, because of COVID. But typically, you know, we bring the youth to Tallahassee, they get to stay in a dorm, for the first time, it’s some of their first time away from home, all the accommodations are provided for anything that they need. And really, it’s teaching them the independent living movement, pre-employment skills, independent living skills, and how to be an advocate. And alongside learning these skills that are necessary for any type of independent living in the future, you get to do all these fun social activities, like have a dance. And I mean, I went to a dance in high school, my homecoming dance, and was mortified, because I didn’t want to look funny dancing in my wheelchair, when everybody else was able-bodied. And so to go to this Youth Leadership Forum, and be able to dance with others, you know, that looked like me or have disabilities, it was just one of the most incredible experiences I’ve ever had. So that fosters the friendships. So if you’re youth, and you’re listening to this, and, you know, you want to learn how to have a better transition for your future, and, and are looking for a good solid community of people to get to know, I would encourage them to apply for the leadership form.
Tony Delisle 57:35
Absolutely. This Youth Leadership Forum that’s held once a year, I think, for 25 years now perhaps going on. And like he said, bringing them to the States Capitol and having all these wonderful, different activities to do is huge. And we’re going to be putting in show notes and links up with this episode about how people can get more involved with that. And as it draws closer, I’d love to have you back and others, you know, that maybe past participants and others that you’re working with practice on and really get the word out about this phenomenal opportunity that’s there. So youth in leadership, if you can unpack what you think are really important and critical attributes for leadership, that would be phenomenal. This is something that I find very fascinating. I’m still constantly trying to learn what it means to be a better leader. I don’t feel like there’s a finish line to this understanding or work at all for anyone. There’s something I think we all can get better at always. So I’m always interested in what other people, how they conceptualize leadership, and what are the characteristics of a great leader?
Sarah Goldman 58:58
Yeah, I mean, even as an adult, I’m still learning leadership and evolving into that. I mean, I think in terms of youth, number one, knowing that you’re empowered is a huge part of being a leader. I mean, if you are walking around believing that you can’t do anything that your life isn’t going to accumulate too much. I mean, how are you ever going to make a difference in this world if you don’t even view yourself as somebody with you know, incredible, unique skills and gifts. So I think empowerment is first but also the ability to connect individuals with each other forming spaces where people feel included, people are provided opportunities, and you’re sort of that person as a youth to make. We know how high school is we talked about it, you know, very cliquey and so how do you as a leader, create those spaces for people with tons of different differences to come together and have those safe spaces?
Tony Delisle 59:50
So when you’re working with say, a student that you know, has a fixed mindset has those limiting beliefs? How do you get them to shift from that to mindset of empowerment?
Sarah Goldman 1:00:03
Validation is key, because I think it’s really something that’s often happened to me is that people don’t validate my experiences. And so really, you know, sitting with the youth and saying, wow, you know, what you’ve gone through is so tough or connecting with them and saying, you know, I’ve gone through something very similar, but then sharing, you know, but that doesn’t have to stay this way. You know, I think self-empowerment is a choice. And unfortunately, it’s not something that you can force somebody to do. But showing them here, things that you’re really good at, or here are ways that you can get involved in sort of encouraging them to take that next step is key. But again, you it’s, you can’t always force somebody to do that. They have to want to make that choice for themselves.
Tony Delisle 1:00:46
Sure. And so when what you’re saying is, from what I’m hearing is validation, does that mean connecting and affirming what they’re feeling, thinking, even if we don’t agree with it? Or maybe you want to change them? And you know, there’s kind of it’s just like, hey…
Sarah Goldman 1:01:03
Yeah, like meeting a person where they’re at directly.
Tony Delisle 1:01:05
Okay, gotcha. And validating that, are there certain ways and techniques that we can demonstrate that validation, towards youth High School, you may have this natural knack to connect with high schoolers. And I can see that in you, but maybe some others that are trying to reach high schoolers that are trying to maybe validate now they’re hearing, oh, I gotta go validate, you know, and work with this person. What are some tips or techniques to where we can allow people to have their emotions or feelings are lived experiences validated?
Sarah Goldman 1:01:33
Yeah, I think it’s a really fine line where you have to not only listen empathetically and reflecting their feelings, or reflecting what they’re saying, but also not allowing them to get stuck in that either. Because I think it’s really easy to tell somebody like I hear you, and I support you. And I see where you’re struggling, but then to just let them stay in that place and not take any steps forward. I mean, I don’t have the necessarily the right answer as to how to help them move forward in that. But it’s, it’s something where I think there’s a balance between meeting the person where they’re at, but not letting them stay stuck where they’re where they’re at.
Tony Delisle 1:02:08
I think you’re you’re hitting it, right there where, yeah, we want to have people feel validated. But we honestly don’t want people to wallow in perhaps the things that they’re going into, because we know that that can lead to being a victim longer than need be, perhaps, yeah, and well, I realized people are victimized, and I don’t want to minimize that. At the same time, we can get stuck in that and be a parking place where we sit for a while, perhaps longer than we need to.
Sarah Goldman 1:02:38
The woe is me, you know, and finally said this about me and all these people have said that I can’t do this. And you know, yes, and that’s very real. And you should feel very angry about those things that that person said about you and your identity. But you have potential. Let’s help you find that potential. Outside of what those people have said about you.
Tony Delisle 1:02:59
Do you yourself have a way of technique of allowing yourself to feel those kind of things but then able to disassociate, put it down and kind of go on so you don’t wallow and ruminate in that?
Sarah Goldman 1:03:11
It’s been an ongoing process for me, it’s getting better now. Yeah, at first I think I didn’t even allow myself to feel those uncomfortable feelings because it went back to that I must be happy all the time. I must be strong all the time. So now I’m doing a better job at letting myself feel the frustration if somebody says something about me that you know, or they underestimate me, I’m going to let myself be like, you know what, I felt really frustrated. But I don’t need to strive and prove my worth to them. That’s just something that they think I know who I am as a person you know, I need to be confident in who I am as a person and just keep going on my way.
Tony Delisle 1:03:47
Wow, you’re really hitting on something I recently read a book by Harvard professor Dr. Susan Davis, she wrote this book called Emotional Agility I think it’s the new emotional intelligence but she really lays out traps that we get into in navigating our emotions and two of them being kind of what you’re talking about here is that we can bottle them up like you know stuff them up, not compartmentalize them. I know I’m very capable of compartmentalizing emotions and trying to put it in a bottle or a box and that’s no good in many ways that’s going to come out and then the brooding like we were just talking about the wallowing. The bottling or the brooding of emotions versus acknowledging the emotion you know having the awareness we’re having the emotion trying to give that emotion a little distance and space to you know two feet away from us maybe to be the observer of it and perhaps transcend it, I don’t know. So you know, I say all that to see if you know you have any certain tricks yourself to navigate the emotions that you may have accompany you that are positive, but want to be more accepting of yourself and kind to yourself and in the process of having those emotions and not bottling or brooding them up.
Sarah Goldman 1:04:58
Yeah, like I said, it’s an ongoing journey. I think some things that have helped me, you know, go to therapy. And that’s another really big thing too is the stigma of mental health, especially when you have a disability. Because a lot of mental health professionals don’t know how to necessarily understand the experiences of somebody with a disability. And so I’ve done a lot of research on this being in Social Work school that you see higher levels of substance abuse, or, you know, people find other ways to numb out because they don’t have the right coping skills that they need. So I think at one point in my life, I definitely use certain behaviors to numb out because I didn’t know how to properly handle my feelings and address my feelings. But really, I think the things that have helped me besides therapy is, you know, journaling, or doing meditation has been really good to just kind of get my head on straight some days when I feel really overwhelmed and emotionally intense. And also just speaking positive affirmations to where, if you’re just caught, I mean, I get caught in negative mindsets all the time, where it’s, you suck, you can’t do this, like you’re a failure, you didn’t say something good enough, and you really can get stuck there if you’re not careful. So reciting those positive affirmations over yourself continuously can help change that neural pathway.
Tony Delisle 1:06:17
It sure can. I’ve been told by some brain scientists that those neurons, a thought is a neuron firing in the brain. And when neurons fire together, they wire together and there’s these bundles of neurons that we can develop in the brain that are just these mind loops, these patterns of thinking and behavior that are repetitious, and are actually hardwired into us. And it’s almost a matter of not letting those loops happen. Being self aware enough, like you said, meditation, like being awareness of our thoughts, and then trying to cultivate new thoughts, new neurons, new firing and wiring together that have different loops in our head back and go. But that’s an incredible amount of self awareness, to be able to have. I imagine that’s a difficult thing. And you mentioned journaling, that can be a really excellent way of really kind of better understanding our thoughts and, you know, having these positive affirmations that are out there. Do you think these are tools that can be used by high schoolers or youth or that can be taught to them so that they can then understand their identity, be able to work through their emotions? And if so, have you tried that with youth at all?
Sarah Goldman 1:07:25
So one, one really cool activity that I did when I was on staff with the Youth Leadership Forum a couple years ago was the first day that they came, they break into small groups throughout the week. So they really have this group of four to five other individuals where they get to process everything they’re learning, they share things about things that they’ve gone through with bullying, and just getting to hear another you say, you know, me, too, I’ve dealt with that, too. It’s, it’s incredible. But anyways, to the activity that we did at the beginning of the week was, I want all of you to tell me out loud, some stereotypes or names or things that you have been called, you know, because of your disability, and they were just blurting them out, like, left and right. And then I said, Okay, so now tell me some positive things that you have been told, because of your disability or positive traits that you have despite your disability. And they could not give me any, maybe two. And so then at the end of the week, you know, we did the same thing I said, Tell me the negative ones, and then tell me more positive things. And the list was, Oh, well, I’m, I’m really good at this or I am a leader and they just finally had this switch in their brain that went off that despite their disability, like they could still have that hope. And so when I let each of them do and some of them needed assistance, of course, but they got to rip up all the negative stereotypes and we just like rip them to shreds, and I you could just tell like they their shoulders dropped and their whole body language changed because they didn’t have to carry around that identity that they came in with.
Tony Delisle 1:08:54
That is so powerful, claiming and naming those things that aren’t serving us, putting it down on paper, and then ripping it or burning it and letting it go. There’s something ceremonial about that that can be a really positive release. I could see how that be could be really effective for you I love how you ended that experience where you haven’t coming in and making the list of the negative comments the positive comments and then after that those experiences then making that list and how that other list grow and I can’t help but think and hope that the internal monologue in their head like you said that can be You can’t do this, I suck, I’m an imposter, Who am I to be you know, doing this quiets that one and, and and a different voice, the same different, more affirming and empowering things can really take over that inner monologue we all have.
Sarah Goldman 1:09:46
Yeah, and it’s even you know, for me, when I left there was, well, I can live away from home. I didn’t think I was ever going to be able to live away from home. I thought I was going to be living with my parents forever, but showing them resources, showing them things that are out there for them. To help them whether that’s assistive technology or, you know, anything, it’s just giving people an empowered mindset is probably my biggest passion in life.
Tony Delisle 1:10:09
Well, I can see how there’s, these experiences really do lead to it instead of just like telling people to be positive, you know, think this way, when you think that way. And this too shall pass it. And yeah, they’re, they’re important. But until we, I think we have those immersive lived experiences, it’s so hard to really embrace that as a sense of who we are and what we’re about or even capable of. And so I really love how you’re going in hard with being immersive and experiential, with what you’re trying to impart with youth and leadership and searching for who they are. I think that’s a really, really ticket to win right there.
Sarah Goldman 1:10:49
It’s something I wish that I had had when I was younger, I think, and like I said, You know, I feel like my mission is that if one person, one youth can just have a little bit easier of a time, and have that roadmap, then I’ve done my job in the world, I feel like and that goes along with all of us in this generation, like we have a responsibility and an obligation to help the next generation that’s coming behind us.
Tony Delisle 1:11:13
What gives you a lot of promise and hope for this next generation that you’re a part of and are working to help raise and carry the torch on? What gives you really hope for a better day regarding the youth nowadays?
Sarah Goldman 1:11:27
I mean, I just think that youth are just more vocal, I mean, they’re all over social media way more than I ever was. I mean, we didn’t even have Instagram or Tick tock, tick tock now, but there was none of that one I never had. Yeah, I had a clock.
Tony Delisle 1:11:45
That’s okay. Yeah.
Sarah Goldman 1:11:46
So you know, I think the ways that they’re able to create change and share things, through those social media outlets, gives me a lot of hope for the next generation, they just have ways of expressing themselves that, you know, I never had an ability to or to connect with each other in those spaces where I didn’t have a way to connect. So I just really see a lot of hope in that. And just providing those programs in areas where they can come together and build that community to then together create that change.
Tony Delisle 1:12:16
Great, great. What are some of the things that are traps that we need to look out for?
Sarah Goldman 1:12:39
Yeah, I think continuing to educate people outside of our community is really important. I mean, and that’s an obligation that we have as the older generation, and also teaching the younger generation to be able to teach when appropriate, and when you have the energy and, and mental capacity to do so. But I mean, there’s just so many things in our, in our society, right now, we’re still living in this medical model of disability and blaming the individual for being the problem and their mobility devices, the issue and it’s not the mobility device, it’s not the stairs, it’s the fact that we don’t have crosswalks that are universally designed for everybody, or we don’t have curb cuts that are universally designed for everybody. And so the more we can educate people, I think that that’s the work that we still have to do and keep changing those perceptions so that the next generation can be included and breathe easier in society.
Tony Delisle 1:13:32
It’s amazing that we still have a lot of those barriers going on nowadays, where it seems like at least with the ADA in the 90s, and on it was very much the physical Architectural Barriers that really we’re getting a lot of tension and still nowadays is still still an ongoing issue. I want to tie into what you said the hope is for the future to also the cautionary tale because I’m an old fuddy duddy. Okay, so, you know, I see tech and social media and all these other things being a wonderful tool on one hand, on the other I can’t ignore a lot of the evidence that’s coming out about the more screentime people have, higher rates of depression and even loneliness like the two most recent study I showed that showed the the two age groups that show the most pervasive loneliness within the groups are elderly, and millennials. And so I don’t know but the researchers were extrapolating that perhaps these virtual social networking things that are you know, could be leading to some of that and communication skills and so you got an old fuddy duddy generation of people like myself that are on one hand saying it is so cool that there’s more access to communicate social media even do work in school, such a wonderful tool, but is that are we using the tool or the tool using us in some ways and so I also my worry and concern is that you know, more screentime can also equal more depression, disconnection. isolation, addiction, addictive behavior, etc. So, so how do you how do you talk to an old fuddy duddy like me when you’re trumpeting the hobo on one hand, it’s here and I see, you know, kind of on the other side, this cautionary tale. So So what do you what do you have to say to old folks like me with this kind of mentality?
Sarah Goldman 1:15:17
No it’s a great point, I didn’t even I didn’t even consider that, you know, because I think it really is easy to be on social media and compare yourself to other people, and you’re just scrolling. And well, I’m not like her, and I’m not like him, and I’ll never be like them. And then before, you know, you’ve gone into this spun out negative mindset, and about five minutes, minutes just now ruined your day. So I think it’s a balance, I think it’s, you know, not only using social media for that, but to stay connected with people. But hopefully, when things start to become a little bit more normalized, at the end of this year, beginning of next year, that we’re able to integrate people back into in person functions so that they can have that healthy connection. Because being behind the screen all day is not healthy for anybody. It’s actually exhausting. And I think that you need that you need people like we’re wired for connection and in person connection. So I think there’s a balance between using social media for making change and bringing people together in ways that you can’t when they live across the country. But at the same time, also bringing people together in person because we need that connection with other humans.
Tony Delisle 1:16:29
I think we can have a whole bunch of episodes just on that one topic. Yeah. And for me, I heard advice that sounds good. Where are we using this tool to create? Are we using it to consume? And where’s the balance there? You know, and being able to do that and like you were saying it’s a tool and like any tool, it can be used for good or or not so good. So what Sarah? Wow, there’s so much there in so much more to get into. And I want to go over some questions that we ask all of our people that come on here it’s really interesting to get their takes on some of these questions and compare and contrast them so I’m a fire some at you here, but um, what are some of the words that you’ve heard that are synonymous with the word disability? It doesn’t have to be words that you agree with, necessarily at all, but what are some of the words that you’ve heard about, that are synonymous with disability?
Sarah Goldman 1:17:23
Oh, yeah, lots of them. Um, you know, special needs, I hear that one a lot. Differently abled seems to be a popular one these days, handicapped. I’ve also had people identify me as wheelchair bound. Just, I think, very debilitating. But you know, me personally, like I say the word disability. I mean, I personally don’t think that’s a bad word. But again, people can choose how they want to identify themselves. But to me, when you say things like, special needs, or differently abled, you’re trying to make disability more positive, but it’s also, disability is reality, you can’t do it or make it more more positive. So when I hear somebody say, Oh, she has special needs, my needs aren’t special, like, I just their their basic needs to be fed, you know, to be cared for, to be dressed. They’re just things that I need assistance with, they’re not special, they’re the same needs as anybody else.
Tony Delisle 1:18:17
Gotcha. What word if any, do you have that could be used, that you find more empowering or accepting? Or is that just like kind of a, an effort and have failed, you know, kind of softening of something that, you know, we’re really trying to put a positive spin on? Do you have any other things or suggestions?
Sarah Goldman 1:18:40
Yeah, you know, I personally, like you know, the people first language and again, this is all depending on individual person. So this is, I’m not speaking for the disability community as a whole. But I prefer to be a person before my disabilities because my disability is not my whole identity. So I personally like when people say, person with a disability rather than the disabled person, because it’s just a little bit more empowering in my mind.
Tony Delisle 1:19:04
Yeah. So if you had any social etiquette tips that you would want to share with people and when they’re communicating with people with disabilities, what might be some of those tips that you would want to share with people?
Sarah Goldman 1:19:19
Yes, this might be my favorite question that you’ve asked. I, I mean, like we were talking a little bit earlier, you know about the inspiration comments that you get at the store, like, I mean, just for being at a store. It’s like, not good for me, it’s for being at the store. I’m just a human, but I think really, some areas that I have seen people not really interact well with me is talking not to me, but to whoever I’m with, whether that’s a friend or a caregiver. And so really just encouraging people to talk to the individual with a disability. Look at them, you know, if they have a sign language interpreter, look at the person, don’t look at the interpreter. I’ll go to restaurants and waitresses or waiters will ask, you know, what is your friend want to drink? And well, I would like a water, please. You know, and giving that person the empowerment even if they have to type with an iPad, to communicate, just letting them speak for themselves is just when they’re talking to someone else, it just makes you feel dehumanized. At least, that’s how I feel. And I think another thing too, that I’ve experienced is like, when people make jokes about my mobility devices, like, you know, all the time, they’ll be like, well, how fast does that thing go? Or do you have a licensed driver wheelchair? And it’s like, haha, very funny, you know, but I think they do it to make themselves feel more comfortable, but..
Tony Delisle 1:20:41
Ywah, release tension. Wow, how many times have you heard those before? Oh, wow, those are really good tips and, you know, talk to the person not necessarily their personal care attendant, or the interpreter. And there’s a lot there. And yeah, I think it’s natural for people that don’t communicate with people with disabilities to have some little bit of tension there and maybe want to say something that’s disarming or etc. But I think like, what you’re really trying to say, is it vision? This is a person with a disability as a person first. Yeah, probably more in like, common than we do different. And so how would you communicate with somebody else to table bodied probably would be what’s, you know, most appropriate for what we’re talking about right now? So that’s, that, that’s excellent. Why do you think stigma exists?
Sarah Goldman 1:21:34
You know, I feel like people just don’t know a lot about disability. I feel like people with disabilities, you know, they’re not well represented in the media, I think people don’t realize that at some point in their life, like, everybody will have a disability, like, you can acquire a disability at any time, you know, through accident, or as you get older, you know, you’re probably going to become disabled. And so I really just don’t think there’s a lot of education about it, and there’s not enough representation. And I also think those stereotypes still exist, like, and then tobor really integrated into all the spaces in places, I don’t think that that will change.
Tony Delisle 1:22:13
So do you feel like that that’s really the antidote to stigma is to be more integrated? And if so, are there other things that really can mitigate stigma and society’s attitudes and beliefs have around disability?
Sarah Goldman 1:22:27
Yeah, so like, I’ll take employment, for example, you know, people with disabilities are employed at such a lower rate than, you know, people without disabilities. And I think that there’s a stigma, where people with disabilities are not going to be reliable, you know, they may not have transportation, or they have medical needs, and they’re going to constantly call off work, or they need expensive accommodations, to be able to do their job. None of those things are actually true, like, there’s research to show that. And so like, really, people with disabilities actually are more motivated, they’re harder workers, and there’s agencies out there to help, you know, provide those accommodations. So until we can occupy spaces and be integrated, I just, yeah, those are just different. One example of where we need to be showing up more.
Tony Delisle 1:23:13
Yeah, I wholeheartedly agree. And the study has been replicated so many times where they’ll throw in a cover letter to an organization that’s hiring. And this doesn’t matter if it’s professions that you know, or hiring people that you know, don’t have to have a bunch of credentials or education to organizations that you got to have graduate level degrees and all these certificates that gets consistent across industries, where you out, you know, the study submits one letter with equal background education skill sets. And as another one, the only differences is one discloses they have a disability and even trumpets it as a strength of why they should be hired. And by margins, and consistently, the person that doesn’t mention disability is more likely to get the call back for an interview or, and if this thing has been replicated across industries of all kinds, and it’s consistent to this day, in terms of its findings, like it’s not a novel study, you know, to even be doing in some regards. And I think the reason it points to what you just said, there’s so many myths out there about hiring somebody with a disability, that really do tie to the stigma and until we can really debunk a lot of these myths and get more integrated that Yeah, stigma will be with us for quite a while.
Sarah Goldman 1:24:30
Yeah. And I think that’s something you know, I get a lot with youth or people that are transitioning out of college and they asked me like, do I disclose my disability to my employer or do I not and unfortunately, you know, for me, I have a visible disability, so I can’t hide my wheelchair as much as I’d love to. It’s part of who I am. But I think that’s a really tricky situation to navigate. And I don’t think that we do a very good job of educating people as to how to handle different scenarios when they enter the workforce.
Tony Delisle 1:24:57
There’s nuance there. So so you know, according to these Daddys maybe you don’t want to mention it and through the interview, your higher reasons and then you’re protected. And then they can’t ask necessarily either. So yeah, unfortunately and the world we live in that might need to be the advice for certain specific circumstances for people, but certainly, you know, hired, you gotta ask for the accommodations you need to do the job that you’re going to do and everything else like that. So it has to be disclosed. So a lot there as well. What do you give advice to students who seem to be struggling with being stigmatized? Is there any advice or counseling that you give to youth and to students with disabilities, or anyone for that matter who have a disability and feel stigmatized by it?
Sarah Goldman 1:25:43
Yeah, I mean, I don’t want this to sound cliche in any way. But I tell somebody, I’m like, if they don’t want you, then that’s not the job for you. Because when you find the right job, that employer is not going to care that you have certain accommodations that you need, or might need to do things a little bit differently. And I had to go through that when I was navigating the job process. But when I finally found that right, employer that didn’t even care, you know, that I might need to work from home some days, or if my van broke down, that I could, you know, work from home, that’s how you know that you have found the right, the right person. So I don’t want that to sound cliche in any way. But I would say if you go to a place where you feel accepted, and you feel like you can make a valuable difference.
Tony Delisle 1:26:24
Yeah, get to those safe spaces. So all right, final question for you, Sarah. What is the independent life to you?
Sarah Goldman 1:26:35
Gosh, um, like independent living, it’s just, it’s changed my life, you know, it’s increased my confidence. And at my age being almost 30, I think it’s proved to myself that I could do some of the hard adulting things. So I really see the independent life is giving people as much self autonomy as they can have to make their own decisions. I mean, I think, as a person with a disability, kind of not going to speak for, for the community. But I often feel like I don’t have a lot of control over things. And so when I get to make my own decisions, or, you know, live in certain ways by myself, and decide what I want to eat, or what clothes I want to wear, that gives me just a little bit of control, more than I had in the first place. So I want I think my biggest takeaway for all this is for people to know their rights, and know what resources are out there, so that they can to achieve that Independent Living life.
Tony Delisle 1:27:35
Know your rights, know your resources, and know that we do have choices and be empowered to make them. Well Sarah, I want to acknowledge you for being a real force of nature, under a condition that is very natural for all of us to be touched by. You certainly have a reputation that precedes you, at least in my circles and orbits, you’re hearing about you long before I ever met you, and all the wonderful things that you do and all about the enthusiasm that the network has had, and you coming on board with FILC. And you’re lending your time and talents and services to FILC. And specifically in the world of working with students and families with disabilities and through transitions. Knowing how much that point in our life really matters and impacts our ability to live independently throughout our lifespan is just so phenomenal. I feel very privileged and honored to get to talk to you and have this conversation. And it’s given me certainly a lot of insights into myself and how I you know, hope to conduct myself professionally. I hope others listening get the same out of it. Regardless, I know you’re making a huge impact and change we didn’t even get into a lot of the legislative impacts that you’ve had. And people that you’ve talked to that are decision makers and are big time and you were you’ve really shined in your voice and lending it to the cause. And I really, really appreciate how you have that drive that inspiration to want to help other people because of where you are in your life and your station in life and having been perhaps in a situation where you have been challenged and now want to meet people there where you once were to be a helping hand up. We need more Sarahs in this world doing the good work that you’re doing and I just want to acknowledge you for that.
Sarah Goldman 1:29:27
No, thank you I really…that means so much my gosh, thank you.
Tony Delisle 1:29:31
Yeah, no thank you. It’s just me reporting what I observed. You know, it’s not me trying to be kind I’m just being factual from the from the seat that I sit and seeing that what you’re doing and I’m very excited to collaborate with you and achieving this mission and in this goal of serving our youth and doing better and doing that and seeing where it can take us into the network. So you really do in my eyes represent this next generation of young leaders and being as exemplary as you are and some of your counterparts and cohorts, it gives me a lot of reason to hope for a better future. So you know, thank you for being such an inspiring force.
Sarah Goldman 1:30:12
Thanks. Yeah, I mean, I’m, I’m really excited to be in the independent living world, I sort of, you know, feel like I have found my home and getting to be able to work alongside people that share, you know, a similar community to what I’ve lived in, it’s been really great to get to know everybody and just sort of have that commonality alone in your workplace is really, really special.
Tony Delisle 1:30:33
Yeah, that is endearing. And you’re and you are living it, you are the example area of you know, how to live the independent life. And with that said, Sarah, I want to thank you for coming on. Thank you for being a part of this episode, and look forward to continuing this conversation with you. I know as the Youth Leadership Forum draws near, and really leaning on you to, you know, perhaps bring in some people that are in high school are transitioning out of high school, or have been out of high school for a while and checking in with them. And let’s have some conversations with them. So that they can, you know, help us explore more about what it’s like to be a student with a disability, what they’re navigating through. And through that learning, we can figure out how we can be more supportive of them, and really try and make the future what you’ve laid it out to possibly be. Thank you for for all this potential and opportunity and inspiration, Sarah.
Sarah Goldman 1:31:23
No, thank you. Thanks for having me. And thanks for this great podcast.
Tony Delisle 1:31:28
Well, you are welcome. Everyone that’s listening is very welcome. And until the next time, onward and upward.
Amy Feutz 1:31:38
Thanks for listening to the independent life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us email@example.com or call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.