Cerebral Palsy self-advocate Sarah Goldman discusses her fight for inclusion.
(18 minutes) Sarah Goldman is a disability rights advocate, and a District Aide in the Florida House of Representatives. She has a Master of Social Work (M.S.W.) in Social Policy and Administration and Clinical Concentrations from.Florida State University.
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DR HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today, I tell you, I’m pretty excited about today. Because it’s not every day that you run into somebody who’s such a self advocate and makes it look so easy. So we’re here to interview Sarah Goldman, who’s going to tell you all about why she is such an advocate. And dare I say, self advocate. Go ahead, Sarah, you have the floor, introduce yourself properly.
SARAH GOLDMAN (SG): Thank you so much for that introduction. So I’m Sarah, I was born with cerebral palsy. And I was diagnosed at about two years old. And, you know, growing up, it was, it was just a whole bunch of things the doctor said that I would never be able to do. But living in a family that was so supportive of my disability, they pushed me to believe that I was just like everyone else, even if I had to do things differently. So I really think that that’s made me into the advocate that I am today.
HR: What was the turning point for you, if you might think of one?
SG: Sure. Yeah. So my parents grew up, especially my dad — was always my advocate. When I went through IEPs at school, they were always the ones fighting to get me the accommodations that I needed. So it wasn’t really until I graduated from high school, but I really realized that I had to advocate for myself once I left school. And so when I turned 18, and I went off to a university — I require personal care assistance, so getting dressed, or taking a shower. And that was not something that the school provided as an accommodation, unlike what I had in high school, which was a paraprofessional. So the only way to get those services is through Medicaid. And, and because I was 19, at the time, I was still 17. I did not qualify for Medicaid, therefore, I couldn’t get the personal care that I needed. So my first semester of college, I ended up leaving the dorm, that weekend that I moved in, and had to move back home for the semester, and was not able to go into school till I had that care for Medicaid A few weeks later, once I turned 18. So at that point, that really was the first instance where I saw for myself an example of an injustice that they faced learning I had to advocate for myself and knowing that that wasn’t right, and and how do we fix this? And how do I advocate for myself?
HR: What is the biggest single thing about cerebral palsy you think that people like me are ignorant about?
SG: Cerebral palsy is a tough one. Because there’s such a variety of people that have cerebral palsy, it can range from people that are unable to speak all the way to people who are able to walk independently, with just a slight limp. And I’m somewhere in the middle, you know, I am able to work and, and drive a car, which I’m so thankful for. But I also rely completely on assistance for, you know, activities of daily living and I’m unable to get myself out of bed. So it’s, I fall somewhere in the middle of the spectrum. And I think that people probably just don’t realize that, you know, they don’t realize the wide variety of, of what cerebral palsy is and how people can differ on their abilities. So that I would say that’s the biggest misperception of CP.
HR: On the physical side. Where did you want to go any surgery or any medical approaches early on?
SG: Yeah. So when I was four, my parents had the opportunity to do a spinal Rosatom knee surgery, which nowadays, probably what they probably would have considered that surgery for me, essentially opens up your spinal cord, and they cut nerves in your spinal cord that reduce the muscle stiffness in your legs. But at the time, that would have been not would have been 25 years ago. The surgery and the technology is way different in 2020. So my parents opted out of that operation. And sometimes I wonder what my function would be like today, you know if they had done that surgery, but I had multiple procedures, muscle lengthening on hamstrings, heel cords, I had screws of my foot to help straighten out my leg. And then as an adult, you know, I’ve gotten Botox injections in both my legs and my arms to help reduce the stiffness.
HR: And where were you taken care of as a child?
SG: We grew up up north. We grew up in Connecticut, and we usually drove to New York for the procedures Columbia hospital had a great doctor, Dr. Roy and he was my my childhood surgeon. He actually now runs an adult clinic. For adults with cerebral palsy, which I think is amazing, so unfortunately, I don’t get to see him anymore another Florida, but he’s been a lot of great work in New York.
HR: Yeah, I remember when I was my orthopedic residency for Boston University, one of the best years I ever spent my life. I lived with the kids at what was then called the “Shriners Hospital for Crippled Children” in Springfield, Mass. And we used to have whole clinics, and it was so much fun. And the kids were great, and the families are great. And it was a real dose of the Shriners with terrific and, you know, taking care of everybody, it was a real dose of seeing how, you know, I guess I’m trying to say everything’s relative, because everybody was pretty happy.
SG: Yeah, and Shriners is a great — I mean, I got to be under their care for about three years, when we did move to Florida. I never had any surgeries or anything under them, but I was able to see doctors, and they do they just make you feel so at home, and so welcome. And there’s toys everywhere and good snacks to eat everywhere. And it’s for a child that grew up having surgeries and is very scared of doctors, they make it such a great environment for children who might have that fear.
HR: What are your career goals?
SG: So the first five years of my career so far, I’ve been working in the legislature at the Florida Legislature. And I’ve been able to be a legislative aide for two different representatives. And so that’s been a really neat opportunity to just get the ins and outs of how the government works, how Florida advocacy works. Because my passion was always within legislative advocacy for people with disabilities. And right now, there’s not a lot of representation of people with disabilities in the Capitol. And so I always just felt like, one day, I would want to be that person that would run for office and, and make changes that desperately need to happen. So these past five years, it’s been great to just sort of learn from both of my bosses and have them mentor me to just see what it’s like to be a legislator and how you have to work to help those that you’re serving in your community.
HR: Well, that’s that’s notable, you got to have a real big bunch of guts these days to go into politics, you got to have thick skin and everything else.
SG: Yeah. And it’s taught me you know, if I do want to run for office one day, which I do, you have to know how to pay attention to the constituent issues in your community and know what’s important to them.
HR: What would advice would you have for someone who’s leaving high school and going to college in regards to accommodations to say, I have cerebral palsy? I’m going to be going off to college, what advice do you give?
SG: Well, what I wish I had had, I guess I could tell you what I wish it would have had, which would be my advice. I never had somebody who paved the way before me. So I didn’t have a mentor. I didn’t have friends that went ahead of me. So I had no idea what I was doing. I mean, if if I had had somebody who had walked the path that I was going on, it would have been probably a whole different story of how services would have been handled. So my advice would be to do your research and find somebody who’s been through it before and anybody who’s watching this and is going to be in that stage of life. I’m happy to be of assistance and help you try to figure out you know, what resources are out there? what accommodations are out there. But really, I think the biggest gap is that schools need to do a better job of reaching the people that are graduating and showing them what’s available and what their options are. And right now nothing like that really exists. And in Florida.
HR: Have you run into advocate JR Harding, and
SG: your Oh, yes. Yeah, JR has been amazing. He’s wonderful.
HR: He’s cool. Tell her audience a little bit about JR.
SG: JR is the biggest FSU football fan. First and foremost that I know, I would always run into him at the football games when I was in graduate school. But he really was just a great mentor for me when I was transitioning into employment, and telling me about all the things that I would face there. But he also drives a really, really neat car. He has this big band with hand controls that showed me that I could drive with hand controls. And so he’s just been a great person to teach me. You can live independently and look at all these things that you can do with these adaptive resources that are out there.
HR: Yeah, he and I were on a panel together. We had so much fun a lot of laughs and and everything and you know, he’s he’s almost a quadriplegic, but he’s paraplegic. he can use his hands a little bit, but as you say, he’s geared up his vehicle, so he’s completely independent. And but I was teasing him because he became a paraplegic twice. I said, How did you do this? Twice. Car Accident, my customized van the next time around.
SG: I remember that because the place that modified my van my adaptive van in Tallahassee is the same place that modified his van and I remember the guy who owns the shop said, Don’t be like JR. Make sure you do not get into an accident ruin your band, Jr. That was his advice for me when I got my license
HR: During these odd Coronavirus, COVID times, what effect if any has that had on you?
SG: The biggest In the beginning was the fact that my personal care attendants that take care of me, while I live independently, you know, we were all under a stay at home border and to protect them and to protect me as well. I thought it would be best to just go back and live with my parents for about three months, just until things settle down. So that was a big blow for my independence. You know, you work so hard to live on your own and live in your own apartment. But luckily, I’ve been flexible to work from home. And so that allowed me the flexibility to go and live with my parents. But in terms of just in general Coronavirus, I think our society has done a great job of accommodating everybody. We can do zoom conversations, and we can have our groceries delivered and do telehealth appointments. Those are accommodations that people with disabilities have wanted for years, and it took a pandemic affecting everybody to make these accommodations. And I just pray that when this is all over, we can continue to accommodate the people that need it, because they’ve done it before. And I’ve shown that they can do it. So why can’t we continue?
HR: Wow, those are very inspirational, very inspirational words. Is there anything we haven’t covered today that you’d like to cover and make sure our audience knows? Yeah, I
SG: mean, I’d love to talk about a little bit about employment. And I don’t know how much your audience knows about gaps of, of employment. But for people with disabilities, specifically those that are on, you know, personal care assistance and require Medicaid, there’s an income limit that prohibits people from making a certain amount of money in order to keep their benefits. So Jr. and I have both been through this and I’ve had to navigate it. It’s a real barrier out there. And it really discourages the system discourages people from working, because to them, you should just live on disability, or work part time just to ensure that you don’t lose your services that help you get in and out of bed every morning. So that’s something that I’ve been personally impacted by and I think needs a lot of reform in our state. And even in our country.
HR: What is the name of that retirement plan you’re allowed to give into yourself? That you? Oh, I’m sorry, the name is escaping me.
SG: The ABLE accounts?
HR: Yeah, talk about the ABLE accounts a little bit.
SG: So right now, um, the asset limit, if you’re on Social Security or Medicaid is $2,000, you’re not allowed to have more than $2,000 in either checking or savings combined, at any point, or you’re disqualified from your services of any kind. So the ABLE account allows you to put I believe, up to $100,000 into a savings account, and also keep you eligible for your Medicaid and your Social Security. And the best part about that is that it allows an individual with a disability to have their own savings and their own credit card to maintain that savings. Because we should be in control of our money if it’s something that we’ve earned and deserve, like we want that control and empowerment.
HR: Is there any legislation pending that would solve the problem of punishing the disabled for going out and hustling a job?
SG: We um, and this has been what’s been wonderful about being able to work in the legislature, and the Florida Developmental Disabilities councils been a huge advocate for this too. We have been able to put together a working people with disabilities program in Florida. So originally, the income limit was $27,000. And now we’ve raised it up to 50. It’s almost 52,000 that you can earn, and your savings is also able to be increased. So the only thing with that is that you have to be on a Medicaid waiver. So whether that’s the I budget APD waiver, or the long term care waiver, they didn’t open it up to anybody on Medicaid in general, just because that would have meant Medicaid expansion. And we know that that’s not something that the legislature is very passionate about at the current time. But I think that that’s going to give people a lot of opportunities to not have To live in anxiety and fear over graduating with a degree or now we’ve been wanting to pursue a college degree, knowing that they’re worth something and can go earn a little bit more money.
HR: So that is the law in Florida.
SG: The program just got implemented probably about a month ago. So I don’t know how many people have been enrolled yet. I know I’m not enrolled in the program, yet, they’re still kind of working out the kinks. But everything is done and all the approvals have been done. It’s just time to start getting people enrolled.
HR: Is there anything else Different Brains might be able to do to help the advocacy and what you’re doing on behalf of not just cerebral palsy, but all of us who might have some disabilities or Different Brains or different bodies? or different What have you that make us a little bit less able to do stuff?
SG: Yeah, I think even just spreading awareness through these interviews, and these podcasts mean, awareness, to me is the greatest barrier out there, people aren’t aware of issues or, you know, often don’t recognize their privilege and see the barriers that people with disabilities face, then nothing can be done. I’ve had so many friends over the years, say, you know, Wow, I’ve never thought about having to call a place at a time to make sure that they’re wheelchair accessible. Until I met you, or, you know, I went on vacation, and I went to this place in it, your wheelchair wouldn’t have been able to get there. And those are just things that my friends have told me, because they never had to think about it themselves until they met somebody with a disability. So if you all can just keep educating and sharing the barriers, I think it’s that’s great educational loan for advocacy.
HR: One of the articles I read about you was had very good common sense. Why don’t we just build everything accessible?
SG: Exactly — universal design. Yeah, everybody benefits.
HR: What a novel idea: everybody benefits.
SG: And it’s not even people with disabilities. I mean, you think about pregnant moms or moms that have young kids and strollers. I mean, everybody could benefit from a curb cut. It’s not just people with disabilities. It’s all of us.
HR: Where can people learn more about the topic? And where can people learn more about you?
SG: can follow me on social media, I have been trying to stay up social media lately as much as I can. Just so much going on in the world that it’s a lot. But my instagram and twitter handles are at SGoldman17. So feel free to send me a follower request. I sometimes post about my advocacy work on there. And we just love to be able to follow other people and see what they’re doing as well. So please reach out.
HR: Well, Sarah Goldman, you’re amazing. And we really, really want to thank you for this inspiration.
SG: Oh thank you.
HR: This is a lot of fun. We hope you’ll come back in the future. And thank you so much for being with us and keep up the great work you’re doing as a self advocate, and really, really going after the legislation and so many other things to make life better. For those of us with some challenges. Thank you very much.
SG: No, thank you. Thank you. This was great.