What does "shoveling the ramp" mean for accessibility?
Susan Smith is a mother and advocate for rare diseases and disability awareness. Susan has two young daughters with Friedreich's Ataxia & T1 Diabetes. Susan has been documenting the girls' and the family's journey through her extraordinary Instagram @texassmith. Join Chris for a wonderful conversation with @texassmith. An advocate for rare diseases and disability awareness. Susan details her day to day life living with disability and explains what genuine inclusivity really is.
If you have a moment, please visit her IG before listening. For more information on living with disability visit the following links:
- Hello everyone. I am Chris Hyams, CEO of Indeed and welcome to the next episode of "Here to Help." At Indeed, our mission is to help people get jobs. This is what gets us out of bed in the morning and what keeps us going all day and what powers that mission is our people. Here to help is a look at how experience, strength, and hope inspires people to want to help others. My guest today is Susan Smith, Susan's husband, Scott, has been a very good friend of mine for many years, but I had actually not met Susan personally until recently, but I have gotten to know her through her extraordinary Instagram @TexasSmith where she has spent the past six years documenting the lives of her daughters with Friedrich's ataxia and type one diabetes. I have watched Stella, now 15, and Grace 12, grow up and share their lives with fierce courage, pride, and yes, grace. Susan uses her incredibly unique voice and energy to advocate for rare disease and disability awareness. And I've been wanting to have Susan as a guest for some time now. I am so grateful to share the Smith family story with you all. Susan, thank you so much for joining me today.
- Thank you for having me.
- As we get started, for those listening who might have vision impairment, I'd like to start by describing where I am in the room that I'm in. I am a balding man with glasses. I'm wearing a black t-shirt and a blue sweater. I'm sitting here in my home office with my red sparkle drum set behind me and on the walls behind me are some record albums, books and photos.
- I'm a 46 year old woman sitting in my home office. I have some books behind me as well, including some photos of my daughters dressed up in superhero costumes, a couple of vases and one plant that I've managed to keep alive since April.
- Fantastic. Well let's start where we always start these conversations by asking how are you doing right now?
- I'm good, I'm excited to be here. I'm so honored that you asked to talk to me about our family and find out more about what we have going on. I'm so happy that you want to hear what we have to say about our life.
- Well, let's start for the folks who are listening here and give a little background. So Here to Help, these discussions are really about an exploration of what motivates people to want to help others and really talking to different people with different experiences to help provide a new lens on the world. And so through Scott and through through your writing, I know a good bit of your story, but as we're getting started for other folks, can you just introduce yourself and your family to our audience?
- Sure. So as I said, I'm 46 years old. I've lived here in Austin since 1994 when I came to the University of Texas where I got a bachelor's degree in psychology and social work. Then I went on to get a master's degree in education. I'm married to a man named Scott who, as you said, you're friends with too. And we met in 1994 in our same dorm and if you can believe it, we have been a couple since then. So for a long time. And we have lived here in Austin, we've loved it. And we had two daughters starting in 2007 when Grace was born. And then Stella was born in 2010. And I could introduce more about myself and just tell you more about who I am, but really who I am today and what we're here to talk about begins with the girls. And so I think introducing them might kind of round it out better than if I went on about everything I've done, 'cause everything is led up to now with them. We're here to talk about the rare disease that they both have and some of the other diseases they have and the disabilities that make their life difficult. And that's definitely part of their identity and it's not a part of their identity that they don't like to claim. But I feel like when I first introduce them to people, we should first talk about who they really are. Grace is the most generous, kind, loving person you will ever meet. Once you've been in a room with her, you know what I'm talking about. So anyone that is listening that has met her will say yes, that's true. That is who she is. She loves Marvel, she loves animals, she loves nature and the world. She loves to learn, she loves her family, loves her sister and our dog Benji. And she's just one of those people that just, I take no credit at all for this. She's just better. Do you know what I mean? Like than than the rest of us in a way. She's just so pure and so her story hits harder a little bit just because of that. She's so golden and so deserving of all the good things and the way she handles all of the things that she actually has been given is so beautiful that it's why I want to help her share her story. So Stella is our youngest. She is in seventh grade and she also loves animals and she has that activist heart. She is just super passionate. When she loves, she loves deeply. She has love roots we say for people, places, things, homes. And she cares so much about social equality and being an ally for groups that she feel like feels like are not represented properly. And she's just, she's one of those people that I can't wait to see what she can do once she's unleashed in the world 'cause she wants to make changes for the better. And I know she has the power to do that 'cause she's so determined. So that's their introduction, not including their medical diagnoses. When we add on the medical introduction, they both have a rare disease called Friedreich's ataxia. It's a neuromuscular disease, it's degenerative and life shortening, it's progressive. It gets worse over time and there are varieties of it. One story is not like the other. And for sure, I want to be clear right away that I'm not speaking for everybody that has Friedreich's ataxia or who lives with disabilities. I'm just only sharing the experience of my girls because the way diseases show up in everyone's body is processed differently and the way you already experience your world. And the truth for Grace is that Friedreich's ataxia is particularly cruel for her because the progression is incredibly fast. Some of the symptoms include a heart condition called hypertrophic cardiomyopathy, makes her heart too thick and enlarged and it's rather severe. She has aggressive scoliosis, she has celiac disease that was diagnosed a couple years ago and the ataxia part of it for her is very difficult. That's the loss of coordination and balance. So she is losing her mobility and her abilities to use her muscles and body. Grace can no longer walk or stand unassisted. She uses a wheelchair full time and that was not true even a year ago. So for her, we can barely keep up with the new devices that we buy her. She can go from walking with the assistance of a wall to a walker, to her wheelchair, within months. And so for her, the disease is very much about loss. There's a lot of loss for her, but when you meet her, that's not what you would think, this is a child who experiences a lot of loss. You would think this is a person who loves the world and wants to give back in some way. Stella has Friedreich's ataxia also and also has type one diabetes, which I'm sure a lot of people are familiar with. It's not quite as rare as Friedreich's ataxia, but it is such a relentless every day, every hour job. It's a lot for her to take care of. She was diagnosed when she was six years old with type one. That was her first diagnosis. She also has the heart condition and she also has the ataxia symptoms making it more difficult for her to move around. She uses a wheelchair at school for long distance, but she can still walk and stand. So we want her to do that as much as she can. So she can still use her bodies in ways, her body in ways that maybe not available to her in the future but is available to her now. And so we're grateful for that. She is a wonderful girl because she really tries hard to protect Grace, who's her older sister, but has a harder version of the disease while also knowing that she has the same disease to see what it could look like in the future. It's a lot for her to carry, but she does it really well, while also just being a middle school student, just being like the other kids and going to school. But that's kind of who they are, in a quick nutshell.
- Thank you so much for sharing that. So we're going to talk about a bunch of different aspects of this, but because you've chosen this medium of Instagram to really document this experience for you and your family and it's so, it's not just powerful in the messages and the stories that you're telling but it's, you're writing is so beautiful and it's so, it's so moving. I think for anyone that hasn't had a chance to look at it, I'd love to just start by having you, you read a couple of posts 'cause that I think will help people understand how you're moving through this as a family. And then we can talk a little bit about your choices of using Instagram and as a family, your choice to share this publicly. But maybe if we can just start with a couple of your posts.
- Okay, perfect. This one was from November of 2016, shortly after we became acquainted with Friedreich's ataxia and started to see how many different things were actually going to be going on for us medically. And the challenge that lied ahead. The title of the post is "Tell me Your Story, I'm listening. This is how I see her, holding tight to my hand for balance. She stabilizes her body against the wind, water and new way of life. Her childhood journey is harder than it should be, but she keeps moving forward. Her rare genetic disorder and heart condition have forced her to change course, but nothing can change the light that shines from within. She wants to share her story to help spark awareness and understanding. Her path won't be easy, but it will be grounded by love. And I'll let her hold my hand all the way there." That was written when Grace was nine by the way. So when she was nine years old is when we first started to share this part of her story. And then the next one is called "So Far, So Fast." And it was one I wrote just when things were extra hard for me and for Scott, my husband. And it was just a way to express that in general. It begins by saying "My girls, I waited for them my whole life. Everything I ever wanted to be, I see in them. As their diseases rapidly progress. I feel my body try to study me with stillness, but a cascade falls within me as if inwardly I am scattering the pieces. Some dark feeling keeps washing over me that feels like sadness or fear or grief. Something all sharp corners in my gut. Like I've swallowed glass. I tell my husband about it with a glance of my eyes and only a few choice words, because he already knows, he's fluent in the language of parenting through chronic childhood illness. Distress clings to me like a second skin and I try shedding it as I write. I know we must become people that we haven't had to be yet. The pain is in the resistance, let go."
- Beautiful, thank you. So I'd love to hear you talk a little bit about this decision which you described really as a family decision. This wasn't you just saying I'm going to go and put myself out on Instagram for any, this was a discussion that you had and you have a whole process for how you come to each thing that you're sharing. I'd love to hear you talk about how, how you came to that decision, how you think about it, and also that you shared a couple of posts here that were really around the challenges and the struggles, but you also share the hope and the love and and and the girls having fun. So if you can just talk about what this platform has has meant for you.
- Yeah, I already had an Instagram account going. I started it in 2012 I think right around the time we all did of just posting a couple followers of family and friends and it was us on vacation and at splash pads and all that kind of stuff. And then we weren't expecting to be on this medical journey that we are now on. And our life really changed. And when it did, especially for Grace who was in fourth, third grade and fourth grade, she had so many different things happen at school that she couldn't explain well to her friends, but she wanted everybody to kind of understand what was going on. She couldn't be in PE anymore because of her heart condition. She's not allowed to get out of breath or do any type of activity that makes it hard for her to breathe because that'd be dangerous for her heart. And so then she started needing a wheelchair. She also needed a shortened day at school. And so as those kind of things came up, she was voicing to me more and more that I wish there was a way to just let everybody know at once, what's going on. So people understood. And I love to read, I'm a huge reader. I love memoirs and novels and I told her that one of the best ways to do that is to write about it and then we could share it on the Instagram page as a way to help people connect. And so we started doing that and then the more people would follow us and then we add a couple new diagnoses in. 'Cause as time goes on, things just kept kind of piling on. And what was great is that the girls, not only both of them, could see what they were sharing was coming back to them and the form of people saying, "Oh my gosh, I have a daughter who also has type one or I know exactly what you mean about the wheelchair. Where did you find that kind?" But then we were those people too, where we started following people in the community of type one and FA, where we would see other people and then we could reach out to them and say, "How did you navigate this and what is this like for you?" And so the page became not just a way for us to express our life, but for us to join the lives of other people. And it really opened up our world on our own awareness on rare disease and living with disability, 'cause it was not something that we knew how to do yet and it's a completely different way of life. And so the Instagram was just helpful with that. It was just an avenue to connect, which I think is why we really all use it in some way, just depends on what you're wanting to connect about. And it just happens that we are wanting to connect on this kind of authentic level of we're living life in a way that's hard and then people would mirror that back or saying, "I am too, I also have that same hard thing." And then we realized that it just felt better. Community just feels good. And so that's kind of where it started. And I like that your question, it said share your life and experiences with our rare disease, but it's just, 'cause isn't that, that's just all what it is. We're all just sharing our life and experiences and on social media it just, we're just doing it in a different way. But the girls know everything I post, they approve all of the words, they help me write of them when there's a specific thing that they want to talk about. They help me gather my thoughts on it. If there's ever something they don't want me to talk about, I don't. And so it's always important to remember with the internet, that we're not laying it all down publicly. There's so many moments that are just the girls, that they are allowed to have. I think we all need that, a place to put it, put it down safely. And the internet is not that place. And so they definitely have total agency over their own story. I'm telling the story for them, but it's theirs and they own that story. And so I'm always very aware of that.
- I'd love to hear, and this might seem like a a silly question to ask, but you know, being a parent and a caregiver, changes everyone's life. But in your intro you basically said that this is, this is really who you are in a way that might be different than how some people think about that experience. And we were talking about this a little last week. When you think about your life before having children and your life now, can you really talk about how you've changed through this and how it's changed the way that you see the world?
- Yeah, I think it's humbling. When you have things just going right and well and easy for you, that's where privilege falls and privilege can be a good thing. But as we know, privilege can also be a little bit damaging personally. And I definitely had health privilege moving through life until I didn't with my girls. And it was a blessing to be able to see the difference in how we could relate to one another as a family and to my friends and where do we want to put our energy on? We only have so much bandwidth at this point. We are constantly problem solving and trying to figure things out, answer questions within our house of how to keep the girls alive every day, literally. That it's changed me so much on, I don't have any space for all of the static and extra things that kind of happen in life that I used to maybe get ruffled about. It's like sifting, if you sift through something, whatever falls to the bottom, we do that a lot. We'll have to just see how many things do we really have going on, sift out the things and what do we actually have to take care of. And that's not a concept I would've understood before I had to actually do it every day. Specifically seeing the changes like to grace's body over time of when she was born. She learned how to walk at 12 months and crawl at the right time that the doctor said she should. And she did all of the things. When she started kindergarten at her school, she walked into class and when she graduated eighth grade of that same year, she was using a wheelchair because that's what her body needed. And I would not have understood how that journey was going to connect and how significant it would be if someone had tried to explain it to me in the kindergarten days without having lived through it. That when we actually watched her graduate, it wasn't a thing of sadness. It was beautiful 'cause she was surrounded by so much love and pride and gratitude that she was there and that she had made this big accomplishment. And it's a change that you have to live through to understand that journey. And it's a really is a blessing to be able to see the difference and know that there's not only negative bad things that come from a hard journey like this, the people you meet along the way in the way that you're changed yourself really is taking you somewhere bigger than where we would have started. And so when she graduated that day using a wheelchair, it was nothing but celebratory for our family.
- Can you share, we talked about this, you wrote a post about her graduation. I think you have a copy there if you could read that for folks.
- So this says, the title of it is "Breaking Cages." "On the first day of her first year, she walked across campus and found her place among the kindergartners. On the last day of her last year, she rolled across campus and found her place among the graduates. During her nine year career as a Trinity student, her body was forced to yield its precious physical abilities. She learned that expanding her mind and spirit would become her anchor, as her neuromuscular abilities became scarce, which is why today our family and community congratulate her with our whole hearts. She embodies everything good and sacred in this beautiful unrelenting world. If on her first day of kindergarten someone had offered me a glimpse into her future, I would've wanted to see. Not yet humbled by the cruelty of a progressive and debilitating childhood disease, I would've eagerly eagerly peaked at her successful and accomplished future. And I would've been shown an image of her using a wheelchair to graduate from eighth grade, which is nothing at all and everything more than I would've dreamed for her. I understand now that I don't want to know how the future looks. Don't tell me how the story ends because without the experience of living through it, we can't possibly grasp the significance. So to all our friends living with disabilities, keep pushing, keep showing up for yourselves and remember that success looks like a red head and a wheelchair surrounded by love.
- Thank you. So, so beautiful. So I'd love to talk a little bit about the world that Grace and Stella navigate every day and how people can start to understand some of the things that stand in the way of them and millions of other disabled children enjoying their childhood experience. And in particular, one of the things that we talked about was this analogy of shoveling the ramp. So if you could, if you could sort of share that story and then talk a little bit about what that looks like.
- Yes, Shoveling the ramp is just one of our favorite things. It just is such a great concept that once you understand it, you can't unsee it in the world. And it came about when Grace and I went to a museum here in Austin that was called the FOMO Museum. It was like a pop-up museum that just was here for a little bit and it was literally for the fear of missing out. And we went without calling in advance to see if it would be accessible, 'cause most museums are, they're actually usually one of like the most accessible places. And we got there and it was not, you could not get into the, you literally couldn't enter the museum. It was like you had to go up this little staircase. She's in her chair and it was just a whole thing. And it's the irony of her not being able to get into a place that was all about the fear missing out, which is so crazy. And so I posted about that and another FA mom sent me this cartoon saying, "I saw what you said. And somebody had showed this to me and I thought it was just perfect. And we call it shoveling the ramp." It's a cartoon image of like an animated image of some kids waiting in front of a school. There's a staircase to go up to the school and a ramp and it's all covered in snow. There's kids standing by the stairs and then a child in a wheelchair by the ramp and there's a guy shoveling the snow and the child in the wheelchair says, "Could you shovel the ramp so we can get in?" And he says, "After I shovel the stairs, I'll clear off the ramp for you," because he was doing the stairs first. And the other child says, "But if you shovel the ramp, we can all get through." Concept being so simple of if you just clear that one path, then all the other kids can go that same way. It's the reorganization of how we plan everything. And so we brought this idea to their, to the girls' school that year that we got this cartoon to talk to them about if we could introduce this idea of shoveling the ramp throughout their school day and career, it would help them so much with what true inclusion looks like. Because inclusion is, I know a word that everyone feels like is really out there right now and everybody's pumped about it, like everything's inclusive. But when you really break it down, it's not always actual inclusion because the order of planning is backwards. It's usually like if you're planning something for a group, for example, the class trips at our school, we love our school by the way, I just want to say that I'm only using an example because my girls are kids and so they're professional careers as a student, but the class trips are typically organized for the whole student body of that grade. And when you make a plan for a student body, if you have 50 kids that can walk and one child that cannot, usually what we all do and our society is make the plan for the 50 kids that can walk and then we see how can we fit in the other person. And this is across the board all the places, at hotels, at restaurants, when we go shopping at clothing stores, you can tell there's things planned, parking lots for the greater community, the bigger community. And then the inclusion comes in of okay, we will allow everybody to have a few parking spaces, we'll allow a dressing room to be accessible, but it's going to be at the back of the store. It's going to be complicated. Obviously a child who uses a wheelchair can go on the class trip, whether or not she can attend all the events is a different story because, you see what I mean? It's just, if we could just shovel the ramp and make all of the plans based on the needs of the person who's maybe more limited in what they're able to do that day, everyone else can get through, everyone can follow. And we've experienced that a lot and when someone does shovel the ramp for you before you get there, it's such a beautiful thing. It's like, Grace has celiac disease and a common way to think of it, that people might be able to relate to is with eating gluten free. I think that's something that a lot of people are doing and understand. If you were to show up to someone's house and they just had desserts that were just all gluten-free as opposed to desserts and then like maybe a little thing that's gluten-free or you had to bring your own, that feels different. It feels different to show up and just have it be everyone's doing the same thing because everybody can just eat a gluten-free cake. It doesn't matter. But then the one person that that's the only thing they can eat, that's inclusion. That's what it really looks like. It looks that way when it feels that way. When you show up and you can tell everyone's doing the same thing no matter of ability or need because it was planned that way. And that's the concept of shoveling the ramp that we love.
- Yeah, it's an amazing metaphor and really has has stuck with me since you shared that. So you mentioned the fact that because your kids are kids, that their work is school. I would love to because obviously at Indeed our business is helping people get jobs and we think about the the world of work and how all of these different areas of marginalization that that show up in society, how they impact the working world. So I'd love to hear how you and Scott think about work as Stella and Grace get older and what it sort of feels like. You were talking, sharing a story last week, about Grace asking about work. And so I'd love to hear you share that story and then talk a little about how you think about that.
- Yeah, work she was, she's been asking that a lot lately of do you think there are jobs I can do from home? Is what she's wondering. And part-time jobs specifically, so jobs that would fit what her body can do. And she's been thinking about that 'cause you know, she's 15 and she would like to contribute to the world and she loves, like I said, loves to learn and be a part of things. And so her first question though is can I find a job that will fit me? How do I do that? And for me and Scott, I mean it really does, raising children with disabilities in a rare disease who are chronically ill is where we're coming from. We have disability but we also have the chronic illness, is a whole different ballgame, because we really need to rely on the health insurance. And I know health insurance is a whole rabbit hole discussion that we could probably do a whole podcast on, but it is significant with the job. And so I can't work right now because I take care of Grace all day and I'm grateful for that, that I'm able to do that. Scott works so that he can help provide for us and provide the health insurance, which we need to literally keep our girls alive. Type one diabetes alone is an incredibly expensive autoimmune disease that is something that just happens to your body. Type one diabetes and type two diabetes are not the same. I want to go ahead and say that. And so when you're looking at jobs in the job market and you have health conditions like these, that's kind of what we think about in our family of what can we do and what do we need in order to survive and how can a job help provide that. I think one of the things that's difficult about our, the workforce is Grace's question of, "Can I find a job where I can work from home in part-time?" I'm sure that we can help her find that, but I'm not sure about how she can provide her own insurance that way. Insurance is typically provided if you work full-time hours, full-time hours or something you can do when your body is able to do that. And the benefits that you can try to apply for to help you with social security or any of the other disability benefits, are not easily attainable. It's also up to the discretion of whoever is deciding whether or not you qualify for that. So it's one of the things that living with disability and rare disease, we've noticed is difficult is that you usually are at the mercy of somebody else's thoughts and their decision and what they find valuable and worthy of helping and you know, what is not. And I think that goes with the same thing with hiring. One of the things she's worried about is, will an employee find me valuable, will I add value to their company, if I'm only there a few hours and she doesn't go to school for full-time, so she's not going to graduate with the type of credits, that another student might. So then it kind of, it's hard for her because she wants to feel the worth that she deserves and she's not sure how she'll see that reflected back in the workforce. And honestly, I don't have an answer for that either. I don't really know. I don't know how we can see that because if we were to look to the media for guidance, the media would tell us like movies and and print and so on, that people with disabilities aren't often valued or highlighted. My girls don't usually see themselves in TV shows, and movies and in ads and that makes them wonder, again, what is undesirable about someone with disabilities that a company doesn't want to spend money on? And how would that translate into being hired and then paid to contribute to that company. So those are definitely questions that we don't have the answer to, but she does wonder about.
- So when we think about this at Indeed and our role in helping people get jobs, in an ideal world, how can we display that same kind of empathy in jobs on Indeed? How can we best advise employers to shovel their ramps?
- I told you the other day, I don't want to tell you how to run a company, seeing as how you're so good at it. So I would say the best way to shovel the ramp is to make a plan in the opposite way that you're used to making it. Do not make a plan for the majority of the people. Try to think of everybody who's going to be involved. And the trick is you don't always know who's going to show up. People in the future too, what is the world like? How many varieties of us are there, which there are a lot. And then make it a little bit more accessible to everybody by planning for something to be hard for a few, within the workforce and then everybody else is going to be all right.
- I'd love to talk a little bit about COVID and that the experience that sort of, we've all been through, highlighted and really shined a spotlight on different communities and the disparate impact that that COVID had. And last week on Here to Help, I had Imani Barbarin who's a disability rights and inclusion activist and she described COVID as a mass disabling event. And it was a really interesting perspective and I know from what you've shared and and from what we've talked about that it was, there was a lot going on for your family and for your girls. Can you talk a little bit about that experience?
- Yeah, oh gosh, it was rough wasn't it? COVID's just been a whole problem for all of us just worldwide. Obviously it's just been so difficult and I think one of the differences that like for a family like ours, we're still kind of in the zone of protecting ourselves from illness. We just this weekend were masked at my brother's house because of COVID and the flu and RSV and all those illnesses right now that are problematic. And so the experience of the pandemic was interesting for us because before it started we already were very conscious about, Stella for example, has a very delicate immune system. She gets ill very easily. She, bless her heart, and she will stay sick for a long time. So when Stella gets sick... when we caught COVID over the summer, she was sick for 21 days, testing positive, just sick. And so we had already been in protect our family, kind of isolate when we needed to mode, before the pandemic started. Then you know, it hit in March of 2020 obviously, and everybody stayed home and everything shut down. And there was a really interesting moment where people were telling me, "I completely understand what you guys go through now, this is awful to be scared like this, waking up in the middle of the night, worrying about my loved ones and the state of the world and what's going to happen, how do we get groceries?" All these problems that we kind of were already contending with, other people started to experience. The thing that made it hard though for us was when everything opened back up, that kind of went away on, "We're with you, we understand, we totally get what you're going through." But then there became a point where it was like, "We got to go. We can't be home anymore." Especially in Texas, we can't do this anymore. This is a lot. Which we understood, we get that. But my girls had to zoom into school for two years. Stella left fourth grade in March of 2020 and when she was finally able to reenter because she was fully vaccinated two years later, she was in the spring of her sixth grade year. Grace left in the spring of her seventh grade year, graduated, still zooming through and then I started homeschooling her for her ninth grade year here. But I think what people want to understand is that the watching everybody open back up continued to spread the virus that if you would watch any of the, like in Austin, we had our risk stages, I'm sure it was different around the world, but in Austin we had like one through five and there was a moment where we were in stage five for months and it would always say like the high risk category, stay home, be around nobody but your family. And it was just months where that would be us. That's the category we're in and that's what we're told to do and that's what we did. But then the category right next to it was like, well just wear a mask and be careful, limit what you do, but it's fine. You guys can still go. And so it was really hard for us to see that balance happening during COVID. So COVID was just, she was so right when she said it was a mass disabling event because it's exactly what happened. And I think what was hard that I witnessed for my girls in particular is when it became untrue for everyone else, but never became untrue for us. It stayed scary for us, it stayed dangerous for us and then it was like a whole another level of hard to witness. So, oh wow. COVID is just a whole layered thing.
- I'd love to shift gears for a minute and talk about Grace and this idea of in Innovate my ability. Can you talk about the idea behind that hashtag and what the impact was?
- Yes, so that was for a class. She did an eighth grade called Innovate, is the name of the class. And their assignment is to come up with some type of different discovery that the world hasn't seen yet that gets people thinking just exactly like your podcast actually, where it just kind of helps people see with a different lens, what's going on in the world and is there anything that maybe you could change or contribute. And so Grace's idea was, what if we ask seven people to, she did an Instagram takeover of my account, 'cause she doesn't have her own, where we asked seven people who have FA and then she had Stella also on, to just film something in their life that represents them being just a normal person in the world, which is exactly what everybody is. To remind people that living with a disability is just another way of being human. It's not a bad way, it's not a broken way, it's just another way. And so she wanted to show that because as I was saying a minute ago, she doesn't see that in media and movies where people are just worked in without being like the character in the wheelchair, like the story's built around it. But they're just a person in a wheelchair who also is a part of the story. And so she made that, she created that for others to see, what it looks like and it was so great. So she had like, each day she had a guest who submitted their video just doing things like watering their plants or getting it in another car. One woman, this woman named Leland, who's a mom and she had her baby in the crib, she also has Friedreich's ataxia and she showed how she gets him out of his crib using her wheelchair and she had a special adaptable crib for him and just things like that. And it was so great. Grace just came up with such a good idea, it let other people with disabilities connect to one another and then let other people, able bodied people maybe take a look and see, "Yeah, people are out here just living their life, getting their baby out of their crib in the morning and you know, all of that. And so it was a really great project and a great hashtag she came up with. We were proud of her.
- One of the challenges in navigating disability is this idea that there is something to be fixed. How do you think about supporting Stella and Grace's wellbeing without, at the same time getting caught up in this idea that there is something to be cured?
- I've, and recently I said that in one of my posts that they are not broken and a lot of times we want to be, there is a difference between wanting to be seen and wanting to be fixed. You can share something with someone and not want them to try to piece it back together because the implication that someone is broken is not true. They're already whole. And I tell them that all the time. They're exactly the way they're supposed to be, even if they're different than the way they used to be. They're exactly who they were supposed to be today. And in sharing their story, all we're doing is sharing who they are. Like I said earlier, it's just another way of being human. It's not a wrong way, a bad way, having disability or rare disease. It's just another way.
- We're starting to run low on time and I I could continue this conversation, we could do a whole podcast just continuing to talk about this. But a a couple things that I want to get in before we wrap up. One thing just for anyone who is joining in or listening who wants to know more about Friedrich's ataxia or type one diabetes, where can they go to find some information and how they might be able to help?
- Yeah, you can go to the organization called Friedreich's Ataxia Research Alliance. It's FARA, their information is fantastic. So F-A-R-A. Their website is CureFA.org and they do so much research and community outreach and connecting people. They're who we spoke on their, the panel at their research conference recently and their information is solid and true and helpful. The JDRF website is also an excellent way to learn more about type one. I could do a whole podcast just on type one because oh my gosh, there's so much information on it and so many misconceptions about type one diabetes and I would love for people to learn more about it and the differences between the two. There's also a podcast by Kyle Bryant and Sean Baumstark called "Two Disabled Dudes." They both have FA. They are amazing and they share so many wonderful details about their life, living with Friedreich's ataxia and what they've been through. They have on excellent guests. And so I would highly recommend listening to "Two Disabled Dudes" too. They are wonderful.
- Well, we have a, we have one question that we always close with, but before we do that, if I could ask you just to read one more of your posts.
- Yeah. Okay, this one's called "Flashback to Friday." "Minutes pass on the Dell Children's Hospital clock. The stinging shock of the doctor's words fade into the familiar ache that locates somewhere under my heart, settling down deeper into my bones, a weight to be examined later. I 'help' the doctors as they move quickly around her bed. The cardiac anesthesiologist inserts her IV line, the nurses secure her head with foam padding. I brush her hair gently out of her eyes. When the monitor leads are placed on her chest, I carefully tuck her stuffed cheetah under her arm. Her bed is locked into place and the door shuts as everyone leaves the room. I thought about asking the nurses for pen and paper to help pass the time. I was in a room that allowed no metal, no phones, no clocks, no music, no other people except me and her. She was there lying on her back inside the MRI machine. Her body completely covered with blankets and tubes and a weighted grid that was strapped into place across her torso. A plastic cage was over her face, but it had a tiny mirror inside reflecting the image of her closed eyes. For three hours, I sat next to the machine and watched her eyes and mouth. I waited for any sign of awakening or pain, wearing headphones to help muffle the incessant noise of the machine, for three hours, I did nothing but stare at her. She is a gift. Carrying her through this painful disease is an honor. It's the most important thing I've ever done in my life. Everything she has ever learned or feared or dreamed or wondered has been important to me. And so I've memorized it all, just like every other mom and no other mom." That was about Grace.
- Well, um, it's hard to follow up that, but I do want to ask the last question that I always ask here, which is normally in the context of COVID, of looking through all that we've been through in the last few years, but I think just all through everything really, is the question to you. With everything that we've talked about and everything that you and your family have been through, what is it that leaves you with some hope for the future?
- It's the empathy. I think we all learned what empathy feels like versus sympathy. I think what I was talking about at the beginning of the COVID spiel I did a minute ago where I was saying that at the beginning everybody was saying, we get it. We understand. Even though everybody kind of went back to their own lives in a way, that empathy, I feel, is still there. It still lies within us. And it gave more people the exposure to what it feels like to really worry about the people you love and yourself, to keep yourself healthy. To have to call ahead and make plans, to have to work things out and make a thousand decisions every day in order to stay alive, which is what we do all the time. And empathy is just such a beautiful thing. Grace is fantastic at it. And so I always know what it looks like when it shows up and I see it in more people now. And I'm hopeful that that will just continue to make things better for people who have disabilities and who live with rare disease. Because the others who make all the plans, who are in charge of shoveling ramps, understand, they feel it in their soul what it is like when something is really hard and you need someone to help you make it a little easier.
- Well, Susan, thank you so much for joining me today. It is really, it's so important to have people who can bear witness to their experience. So certainly other people who are going through the same thing have an opportunity to connect and feel that they're not on their own. But for so many of us who don't have that experience day to day, the way that you approach telling these stories with such incredible thoughtfulness and intention and humor and beauty and raw honesty, it's really been a profound experience and I feel incredibly grateful to get to follow along with that. And so I just want to say thank you for everything that you and Scott and especially Grace and Stella do in terms of sharing that story with the rest of us. For anyone that hasn't had a chance yet, please follow @TexasSmith on Instagram and you'll get a chance to, to see what the rest of us have been seeing. And thank you so much for sharing with us today.
- Thank you. I think a great way to wrap up everything the girls have wanted me to share is with the idea of there's a difference between fitting in and belonging. If I fit in, I have to be like you. If I belong, I get to be like me. And I think, we want to belong and my girls want to belong and so do other people who live with rare disease. And thank you for having me on as an opportunity to help them belong as opposed to just trying to fit them in. I really appreciate it.
- Thank you.
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