Episode Summary
This episode features mother and daughter Bobbie and Angela Singletary. This dynamic duo shares their story, full of hardship, resilience, joy, love, and support. Bobbie, Angela, and two of Angela's kids all have achondroplasia, a form of dwarfism, as did Angela's late sister Cindy. Listen how Cindy’s life at 33 could not be saved despite the huge sacrifices made by her mom and sister. We will hear how the Medicaid system failed them and how in spite of life challenges, including discrimination, systemic inequity, and personal struggles with alcohol, these women continue to advocate for others.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://www.youtube.com/watch?v=1qFpEPqzdD0
About Angela and Bobbie
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[00:00:00] Bobbie: The doctors said, "you do so much for her. You're just so awesome going around doing this." To me, I was like, but I'm her mom. That's what I'm going to do. Any mom would do. Just cuz I have dwarfism doesn't change the way my brain's thinking as a mom.
[00:00:19] Carole: That was Bobbie Singletary. She is three feet, 11 inches and married a man who was over six feet tall. They had two daughters, Angela and Cindy. Bobbie, Angela, and Cindy were all born with achondroplasia, a type of dwarfism, as were two of Angela's children.
Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss, and today I have as my special guests, Bobbie and Angela Singletary from Biloxi, Mississippi.
Bobbie and Angela sat down with me and we had a far-reaching conversation about many topics. For example, we don't often hear the perspective of a sibling when it comes to what it feels like to have a sister or a brother that has medical challenges.
[00:01:13] Angela: I think any sibling of a medically complicated child feels like they're in their shadow. That's just normal because there's always more need in that bucket than there is in ours.
[00:01:27] Carole: Bobbie, Angela and Cindy all chose careers where they could help others. Cindy worked in the school system. Angela is a bestselling author, a leader in her community and a certified life coach. Bobbie is a home trainer at apartments for people with learning disabilities.
This interview was transformative, both in words and stories they shared, but also in the energy and chemistry I witnessed between mom and daughter. A true dynamic duo.
[00:01:58] Bobbie: When I was growing up, the question I would get was have you worked in a circus? With dwarfism, it was the only job they could do was be in a circus. Now, they realize that we can do anything anybody else can do. Just give me a step ladder.
[00:02:17] Carole: The first question I always like to ask, is there a childhood memory that you have that sticks with you today?
[00:02:25] Bobbie: Learning to ride a bike. I remember it was a huge bike, and I couldn't sit on the seat, of course. But kids that I was playing with had gone in to eat and so I was out there with the bike. And I just kept trying and trying until I did it. Like I said, I couldn't sit on the seat, but I could ride the bike. And it was huge. It was bigger than me.
[00:02:46] Carole: And how did that feel?
[00:02:47] Bobbie: Wonderful. I just felt like I'd really done something.
[00:02:55] Carole: I'm gonna take this opportunity for each of you to introduce each other.
[00:03:01] Angela: Bobbie Singletary is my mother, and she is a social justice advocate, always has been. She taught me the core values of my social justice advocacy that I still see through the lens of today. And she is Gma to my three hooligans. And currently we reside together and we are really enjoying the relationship that we have built at this stage of our lives.
[00:03:35] Carole: Bobbie, would you like to introduce your daughter?
[00:03:39] Bobbie: This is my awesome daughter, Angela Renee Singletary. She's my firstborn and words can't explain how proud I am of her. She's done more than I ever thought she would do as far as being a social justice person.
She's blown the waters up. She has a beautiful laugh that she just lets go and enjoys life and I'm so glad she does cuz she has taught me to enjoy life. And I love the three grandchildren. Oh man. I love those little ones to death. She's done a great job being a mother, too. I'm so proud of her. So proud.
[00:04:18] Carole: Tell me about your grandchildren. How old are they?
[00:04:21] Bobbie: Aidan is 13, DL is 11, and Maliaka is eight. And Maliaka is the youngest one and she rules the house. She's the fashionista. We don't go anywhere until we run it past her to see if we're gonna look all right.
[00:04:37] Angela: It's true.
[00:04:37] Bobbie: Yeah, I have come out of my room and she's, "are you gonna wear that?" And then I went, "I guess I'm not!", turn around and change. Then DL, he is funny. He is so funny. I love it, especially in the morning to get up with him. He'll be sitting there on the couch and he'll just say something off the wall and it just makes me laugh. And it's awesome because that's the way you wanna start your morning. You want your morning to be laughing and start your day good. And then Aidan, she's a typical teenager. Yeah, she's more serious. She can be funny. She reminds me a lot of me when I was a teenager.
[00:05:19] Carole: Angela, are your children of average height?
[00:05:22] Angela: My girls have achondroplasia, like my mom and myself. My son is average height. He's actually tall. He's not average height. Average height is the chosen go-to phrase, but he's actually tall cuz their dad is 6'6". So he's above average height.
[00:05:38] Carole: How tall is he?
[00:05:39] Bobbie: He's taller than everybody in his class.
[00:05:41] Angela: Yeah. Yeah, he's as tall as some teachers. Taller than some teachers.
[00:05:46] Carole: And how old is he?
[00:05:47] Angela: 11.
[00:05:48] Bobbie: He loves to tell us too how tall he is.
[00:05:50] Carole: It's interesting. I asked you if your children were of average height, which now I'm realizing is not a good question. How should I ask that question?
[00:05:57] Angela: No, it is, because, so the phrase average height is preferred to avoid using the phrase normal because, you know, what's normal? So average is an actual thing, right? So there's nothing wrong with that question. It just doesn't, for this one situation, doesn't apply. The answer is yes, he is average height because the intention is he's not a little person. But he's actually above average height.
[00:06:28] Carole: Angela sent me beautiful something that Bobbie wrote about her life.
[00:06:34] Angela: Last year, I led two anthologies, one covering stories from parents of children with dwarfism. I asked, my mom. Made her. And so she did me the honor of writing that chapter to be published in the Women with Dwarfism. And so this is where that essay resides.
[00:06:56] Carole: Do you want to pick a part to read out loud?
[00:06:59] Bobbie: Yeah. My parents did not treat me any different than my older brother. For example, when my brother went off to college, my dad lowered the handlebar to push the mower so that I could do the lawn. I went to a regular school class and to junior college.
My dad was an Iowa farm boy and an Air Force Master Sergeant. He didn't take any excuses and believed there was always a way. We just had to figure out the path. And that's who he was. And he always told me, Bobbie, you can do anything you want to. You just gotta find a way to do it. And after Hurricane Camille, I was nine when it came through, that was a long time ago. But we had to pull out nails out of the wood so that we could fix the house. We all did that. Everything.
[00:07:45] Carole: You were brought up in the 60s, is that right?
[00:07:47] Bobbie: Yes.
[00:07:48] Carole: A lot has changed since then. What comes to mind in terms of how you feel that society has changed for the better or for the worse, in terms of accepting people that are different?
[00:07:58] Bobbie: I think a lot more people have accepted people with disabilities and believing that they can do what other person could do and just maybe in a different way. But there's still a long ways to go cuz there's still people out there that still believe that a person with a disability may not be as educated as your average person going to college.
It has come a long ways. Definitely. Cuz when I was growing up, the question I would get was, have you worked in a circus? That was pretty much the job they thought that a person with dwarfism, it was the only job they could do was be in a circus. So now, though, they realize that we can do anything anybody else can do. Just give me a step ladder.
[00:08:42] Carole: And do you consider yourself as having a disability or being disabled?
[00:08:48] Bobbie: It's hard to answer that because it depends on what I'm doing. If I have to reach something, then maybe. But I do think there's people around me that are not much taller than me I know would get a kick out of, hey, I'll ask them to reach something and they feel good that they get to reach something for somebody.
[00:09:07] Carole: Angela was your first-born and she had a sister?
[00:09:11] Bobbie: Yes.
[00:09:11] Carole: I would love to hear the story from you, how you met your husband and what your pregnancy was like.
[00:09:16] Bobbie: We'd go swimming in the river a lot around here. I was 19 and here comes these two guys, and needless say they were about 6'3". That's how tall my husband was. And he came over and started talking to me and I was in the water. And he was like, let's go over here. And I was like, "well, I'm short." And he goes, "that's okay. I gotcha." And then he went to let go of me. He goes, "oh, you are short." I said, "yes." He got my phone number.
At that time, I was still living with my parents. I was working and going to junior college, and he called me that night to make sure the number was right, because they didn't have anything to write it down. So they were telling each other back and forth the phone number so he wouldn't forget it.
[00:10:01] Carole: No cell phones back then.
[00:10:03] Bobbie: No. No cell phones. We just started dating. We dated for about a year and then we got married. We had a pretty big wedding and about nine months later, we had Angela. Which was awesome because I can still see my husband walking in with Angela in his arms when I had her little sister. That's a vivid picture in my mind that I just wish I had a picture of cuz it was just the best thing.
I was laying there half dazed, but I can still remember that. And that was just, It was a beautiful, but yeah, I had no trouble with Angela. I felt good when I was pregnant with Angela and everything went great, and then her sister came along. And at first, everything seemed fine and we knew she had dwarfism.
People with dwarfism take longer to walk because the head is heavy, the legs are short, and the body is long, and so getting everything to move together. And she didn't start walking. At two years old, we knew that something was going on, and so we started going to different doctors and nobody knew what was going on.
We don't know why she's not walking. And some doctors though wouldn't even listen to me. I don't know if they thought because my height or what? Or it just seemed like they just wouldn't listen to me about she's doing this and this, but not this. She can't be doing that. Yeah, she is. I just felt like I was hitting a wall.
And this is when you didn't have internet either. So word of mouth of people was how I learned about different doctors. I went everywhere. My husband at that time was working at Ingalls Shipyard. They were laying off, hiring, laying off, hiring, turning back and forth. And so of course at that time he was laid off and the first thing outta the doctor's mouth was, we're not a charity hospital and we can't do this for free.
This was over in New Orleans, and I had my dad with me at that time, and Angela was with my mom, and I let out a string of cuss words. I had never cussed in front of my dad. I told that doctor what I thought of him. Yeah. My dad didn't say a word. He just, okay. And we walked out and the nurse come up and she said, "I'm so sorry about that." I said, "I'm sorry you have to work for him."
But thank goodness we did find one at the University Medical Center in Jackson. Awesome doctor. And he knew right away what it was. And he went in and it was a spinal cord was being pressed with the spinal column. It was pinching it and so she couldn't get the message down to her legs to walk, but by then it was too late. Atrophy had set in. But she was able to use her arms and she was very intelligent. Just like Angela.
[00:12:49] Carole: A wheelchair user, is that right?
[00:12:51] Bobbie: Yes.
[00:12:52] Carole: You were able to learn a lot, I'm sure, from her. From both your daughters, right?
[00:12:56] Bobbie: Oh, yeah. I have. Yes. I learned a lot of, don't take anything. Yeah. [laughs]
[00:13:03] Angela: Stand up for yourself.
[00:13:04] Bobbie: Yeah.
[00:13:05] Angela: Advocacy.
[00:13:07] Bobbie: Yeah.
[00:13:08] Carole: It's interesting the way you felt yourself as the mom, how you were being treated by doctors and then you had that experience to probably empathize that much more when you knew your daughters might have to experience that as well. I can't imagine. I don't know, would fury come into that?
[00:13:26] Bobbie: Oh yeah. I tried to teach them that just don't let anybody run you over. Just speak your mind. Try to start out as, I can do this. I got this. Just get outta my way.
[00:13:39] Carole: What kinds of lessons have you learned from your daughters?
[00:13:44] Bobbie: To speak up for myself. Now, Angela once told me that I'm very outspoken when it comes to my family, but when I come to myself, I don't do it as much and so I'm learning more about even still now learning more about speak up for myself. No doubt.
[00:14:07] Carole: Angela, what has inspired you that your mom has taught you?
[00:14:13] Angela: I grew up poor. We had what we needed, but we grew up in the lower socioeconomic neighborhood and because of that we had a lot of diversity racially in our neighborhoods. Honestly, it wasn't uncommon for us to be the minorities when the kids were outside playing, and my mom taught me the value of equality and equity before equity was even a word through lessons with my friends, seeing the injustices that some of them would face or their families would face. She had very open conversations with me about racism and how it's our job to make sure that A, we're not continuing that, but then also that we are standing up and advocating for others.
And so having that experience to be able to see some of those things firsthand. Because the neighborhoods we grew up in and then coupled with her teachings, this really formed a huge foundation of my belief system and the way that I consider myself a humanist and really looking at people for who they are, what their intentions are, and what their needs are.
[00:15:35] Carole: Bobbie, what drove you to be that advocate? Was it something that your parents instilled in you or is that something you developed later?
[00:15:43] Bobbie: I think that my parents did instill some in me, and I think it grew more as I had my girls and knew that we were gonna have to advocate with them. I didn't want to be just speaking for them. I wanted them to learn as they grew and they did. They were young and they would advocate for themselves, and I would back them up.
[00:16:07] Carole: Tell us a little bit about your philosophy and how that worked out for you in terms of letting your children be as independent as possible. As soon as they could in terms of their age.
[00:16:17] Bobbie: That was something that they would have to do things for themselves, and that included climbing up the cabinets to get the dishes down that they needed. Or we had a, what they call a kick stool. You could step on it and it would go down, it was like a library stool. And they'd get stuff out of the freezer or grab something to make something, like a big, large spoon to pull something towards you, like a jar of peanut butter or something. And Angie had chores. Her chore every evening was to wash the dishes. And she's up on the stool doing it just like anybody else would.
[00:16:52] Angela: This is before dishwashers were in every household.
[00:16:57] Bobbie: Exactly.
[00:16:58] Carole: And then how was it for you having a sister in a wheelchair but you weren't?
[00:17:02] Angela: It's complicated. I think any sibling of a medically complicated child feels like they're in their shadow. I think that's just normal because there's always more need in that bucket than there is in ours. But me being the older child, much like my oldest, I naturally fell into the little mommy role, whether it was asked of me or not. I didn't mind that she had extra needs, but then there were times where I felt frustrated with it, and then there was some fear at times too when she would have to have surgeries because she would have to go to Jackson or Shreveport and I would be here or I would go. Either way, I didn't fully know what was going on or what the result would be, and nobody wants to see their sibling in pain with IVs and all that, so it was a mixed bag.
[00:18:01] Carole: Were you close with your sister?
[00:18:05] Angela: Extremely. Very close.
[00:18:11] Carole: Bobbie, how do you take care of yourself?
[00:18:13] Bobbie: I go to work. Right now, I'm a home trainer at a group home and apartments for people with intellectual disabilities. I love it very much and pretty much it's helping people that have a learning disability. They live in either, we have some apartments and they live there, and we help them with their budgets and with their money so that they pay rent. It's a real apartment.
And then the group home, we do the cooking and if they need to go somewhere, we take 'em there, but they dress themselves and bathe themselves. It's so much fun. I love it. I love it. These people are just so loving and awesome.
[00:18:53] Carole: You wrote about your relationship with your husband when it started to go not so well, and the reason I want to bring this up is just you had a way to finally free yourself of some of the things you described that weren't going so well.
[00:19:06] Bobbie: Yeah. The one thing that I did start doing after we got Cindy situated with the surgery on her neck and everything, and it wasn't a happy household. He was very stern, very I'm the husband, I'm the dad, this is my house, I'm paying the bills. And I grew up in a household where you get married once and that was it. You don't get married again. Cuz it was a religious thing. I've changed that thought now, but it wasn't a happy household and I started drinking and every day. My doctors called me a functional alcoholic. I was able to do what I needed to do. During the day, I could even go to the school and help with the students, the teachers, and nobody knew that I was drinking cuz after I got sober I would talk to them about it and everyone was like flabbergasted.
They did not know that I was drinking. But I drank every day for about almost eight years, and then I realized that my girls were getting older and they were pulling away. And I understood why. I would've too, cuz you've got a mom that's drinking all the time and not being a mom.
And my husband had also killed himself. He took a lot of pills and alcohol and he was diabetic and we believe he didn't take his insulin. They said it looked like he laid down and went to sleep. And he had tried before, many times, different ways. And so we thought that it was a possibility of it happening. And at that time, I had already separated. I was at my parents' house with the girls cuz I wanted us to be safe and I had already decided I was leaving him. So I got myself into a rehab and got sober. I've been 23 years now sober.
[00:20:58] Carole: Was there something that helped you that stands out?
[00:21:01] Bobbie: Keeping my relationship with my girls. I did not want to lose my girls and I was afraid I was losing them. I did not want to lose that mother-daughter relationship cuz my daughters are my world and I could see it slipping away and could feel it. And that's what made me go to the place and tell them I've got to check in. And thank goodness for my dad, he helped with the girls while I was in, cuz I was there for 21 days.
[00:21:28] Carole: So you went somewhere to a facility to help you?
[00:21:30] Bobbie: Yeah. There was a local one, yes. That was the only way I could do it. I do a lot of praying now and I did that then too. Whenever I felt it coming on. I wasn't gonna lose my girls.
[00:21:45] Carole: Is there anything you'd like to say to Angela while she's sitting right next to you?
[00:21:52] Bobbie: I love you very much. I'm very proud of you. Thank you for sticking with me. Thank you for being there whenever I needed you.
[00:22:01] Carole: How long have you been living together?
[00:22:04] Angela: Since Cindy died in June of 2019.
[00:22:08] Carole: That's another big mountain of grief. How did she die?
[00:22:13] Bobbie: They believe it was her heart. She had heart troubles. It's a big, long story about the Mississippi Medicaid had stopped and so she and I went out to California cuz it's easier to get Medicaid and stuff out there. And we started going to doctors, but we didn't get out there quick enough to get all the tests run and stuff to find out that her heart was not doing well. And I had gone to work that day. I was working at a veterans village for veterans that are homeless. It was like a camp. So I had left that morning and when I came back that evening, she had passed.
[00:22:52] Carole: I am so sorry. And it sounds like from how you told the story that perhaps that you had better access to medical care, am I understanding that correctly?
[00:23:00] Bobbie: Yes, very much, yes.
[00:23:02] Carole: Can you tell us a little bit about that for people out there that are in your situation and also people that aren't, just to realize how unfair these things can be. We don't hear these stories.
[00:23:12] Bobbie: She was getting social security and she also had a part-time job. She was an advocate. She would help students in schools to get what they needed to learn, to make sure that the schools were giving 'em extra time or maybe giving 'em a test the way that they understood. Cuz, you know, there's some things that the schools are supposed to do and they don't do it unless you push 'em.
But, and so she was very good at that. She was really good at that. I was her assistant and her driver. So I was receiving social security also for helping her. And somehow had thought in their mind that we owed them a lot of money and we didn't, cuz we were very good about making sure we didn't go over anything we shouldn't.
And so when the social security stopped, the Medicaid stopped. So therefore she had no medical insurance at all. We were appealing, that's the word, for the decision. And it took so long, she was just not doing well. And we had bought a house and we couldn't keep it. And so we made a decision just to go on out to California. And so she and I drove out there in three days.
[00:24:24] Carole: And when you got out there, what happened?
[00:24:27] Bobbie: We lived in a hotel for a while. I already had a job. I had gotten the job here, and so I had that ready and I started that like two days after we got there. And so we lived in a hotel for a while. And we had just gotten a little apartment about a week, maybe two weeks before she passed.
[00:24:46] Carole: And you went out there specifically to get care that you were?
[00:24:49] Bobbie: Yes, because we knew that the Medicaid was a lot easier to get and that they had programs for people with disabilities that were a lot easier to get than in Mississippi. Mississippi is terrible about their programs.
[00:25:03] Carole: Yeah, I'm learning that in interviewing people in different states, how many people change their lives in order to get the care that certain states have that they don't have in their state. And it's mind boggling. Even major cities that aren't as good as some smaller cities. So your intention, it sounds like, was to actually move to California because you could get all this care there.
[00:25:24] Bobbie: Yeah. That was why we moved, was to get her medical insurance and we knew that we could get her better and easier access to doctors.
[00:25:34] Angela: Better doctors.
[00:25:35] Bobbie: Better doctors.
[00:25:35] Carole: Better doctors. So did you have a time when she was being seen by the doctors there and it was just?
[00:25:40] Bobbie: Oh yeah. There, yes. We had started that. We had already gotten the Medicaid. We were getting on our feet. We were still struggling, but we were getting on our feet and she had Medicaid. We had seen doctors, we had started running tests, but we just didn't get there quick enough to do enough tests in time.
[00:26:01] Carole: How old was Cindy?
[00:26:03] Bobbie: 33, 34?
[00:26:05] Angela: 33, yeah.
[00:26:06] Bobbie: 33.
[00:26:07] Carole: 33. And just to rewind a little bit, you are saying that you both had jobs, but am I right in understanding that in order to receive social security, you couldn't make too much money because then you wouldn't receive. Now, I imagine these jobs that you have aren't paying you a lot.
[00:26:26] Bobbie: We were in Mississippi.
[00:26:27] Angela: She didn't have a job.
[00:26:28] Bobbie: I didn't have a job.
[00:26:29] Angela: Her job was taking care of Cindy.
[00:26:30] Bobbie: Yeah, I was Cindy's-
[00:26:31] Angela: And Cindy had a part-time job.
[00:26:32] Bobbie: Right. And she was working part-time for a nonprofit.
[00:26:36] Carole: For a nonprofit.
[00:26:37] Bobbie: Yeah. And in Mississippi, you don't make much money on nonprofits.
[00:26:42] Carole: I'm trying to understand this. So Social Security Agency, why were they saying that you owed them money?
[00:26:49] Bobbie: What it was that Cindy and I had worked before for a different nonprofit and they thought that our money together had made up too much money. I know it's hard to explain, but we had write offs. Write offs, and so we had done that. We had, like with medicine, Cindy had a service dog and of course she could write the vet off, the food off and the care for the dog and everything.
And we did that and we kept everything and they came and took 10 years worth of paperwork and I had it. They were surprised I had it, but I had it. We kept up with everything.
[00:27:26] Carole: You were audited, it sounds like.
[00:27:28] Bobbie: Yeah. Yeah, I was audited. Yeah. Yes, that was, yeah, that's what it was. It was audited by Social Security, yeah. But by the time that was over, the lady had called, said everything's good, and they sent us back our paperwork, and this was, it's about five years down the line, they decided that we owed them $94,000. Yeah. I'm like, no.
[00:27:56] Carole: So wait, so where's the disconnect? What in your mind happened, or?
[00:28:00] Bobbie: Somebody's not looking back at what the decision was, or is somebody changing their mind about the decision? I think it's too many people making decisions is what I think it is.
[00:28:13] Angela: I think that the state of Mississippi had some severe budget cuts and they had to figure out where that was gonna come from, and so they started dropping people from Medicaid because they've since had a class action lawsuit where they've lost, but we weren't a part of it.
And so the struggle is that these agencies can audit you whenever, however they want to. And they passed the 10-year audit five years earlier, and then came back again and said, now we are accusing you of overpayment and you have to pay us back.
[00:28:46] Bobbie: Yeah.
[00:28:47] Angela: And until you prove that you didn't overpay, we're gonna cut you off. And so between trying to prove they're not needing to overpay and not being able to actually get an actual explanation, because nobody answers the phone and nobody answers your emails, because they're all understaffed, because the budget cuts are so severe, then it just makes it hard to even truly know why to this day they are still saying that she owes, $90,000.
[00:29:19] Bobbie: Yeah.
[00:29:19] Angela: Her, herself. And it goes back and forth and she's been fighting it since she got home.
[00:29:25] Bobbie: Yeah. And you never talk to the same person, so that doesn't help. You don't get like a case worker.
[00:29:31] Carole: Just like you two are sitting here. You two are both advocates. You two were basically doing so much for other people to help them because you empathize. And that's just the kind of people you are. Are there lawyers out there that would help you advocate for you?
[00:29:45] Angela: Not pro bono.
[00:29:46] Bobbie: The ones I've talked to, they say there's nothing you can do. It's social security. They're like
[00:29:51] Angela: too big to fight.
[00:29:52] Bobbie: Yeah.
[00:29:54] Carole: Do you see yourselves as being very resilient human beings?
[00:29:59] Angela: I think that's an understatement. We're like cockroaches.
[00:30:04] Carole: I mean, it's just, can't make that up.
[00:30:06] Bobbie: No.
[00:30:07] Angela and Bobbie: You wouldn't want to!
[00:30:11] Carole: What advice would you have to people out there that have had losses and have had challenges, what has helped you the most?
[00:30:18] Bobbie: When Cindy passed away, Angie came out to California and got me because family is my support, there's no doubt. And I didn't have anybody out there. I had a few friends I made at work, but Mississippi has always been my support system cuz I have old friends here.
And so I definitely say stay with your support system and try to let 'em know that you need 'em. I like to go and shut myself up in my room and just stay in there, but Angela's been really good about pulling me out and having me do things, which has helped cuz that's made me a happier person. There's no doubt.
So get out there and do things and it's gonna hurt. Stuff's gonna come up and you're gonna remember, but just try to remember the good times too, cuz there were a lot of those.
[00:31:11] Angela: Yeah, I would say similarly, as a life coach, it's important to feel your feelings. Trying to stuff 'em down doesn't do you any good, and trying to hide from them, whether it be grief or just struggles, is gonna just fail in the end.
Lean on your support system and whether that's the family that you were given or the family that you've chosen. And if you don't have either, then it's never too late to create one. It does take stepping out on a limb and creating that friendship, or if you already have that friendship saying, hey, I could really use some support. And that can be tough because you don't want someone to say no or someone to say yes and then not be there for you.
But continuing to find those people who can be there for you to help you through that while you are feeling your feelings is key to resilience. And then once you've gotten past it, you can use those things that you've survived as evidence that when the next thing comes around, you will survive it as well because you've already survived the other things.
[00:32:19] Carole: Angela, you're a life coach. Clearly, you have a lot to draw from, which I imagine makes you an extraordinary professional in helping other people. Were you drawn to that career because of anything in particular?
[00:32:31] Angela: When I first went back to school after I was married, I originally thought that I wanted to be a dietician because as a little person, as the sister of a medically complicated sibling, I understood the need for being healthy and how that can affect us as little people with our bone structure. And then, you know, everybody else as well.
And then could only find a program that was a day program and I had kids and so on, so I then was considering psychology because everybody has always told me I'm a good listener. I give good advice. But then once I started school I realized I don't really like going to school. And so getting a Master's or PhD was out of the question.
I was going to school off and on. My husband was going to school. I had kids, and then I was at Tulane and they opened a wellness coaching bachelor's program and I was like, this is it. Like this marries the best of both worlds. And after I got divorced, my mom and my sister watched the kids at night for me and I was able to finish my bachelor's and I started wellness coaching with a focus on health.
But then as I started to work with clients, I saw that health is the surface and the actual need is much deeper. And so that's shifted into life coaching. So currently I help women ages 35 and older make themselves a priority again. Often women come to me, they're overachievers, they've been giving themselves away, they're people pleasers, and I help them map out goals that they have for themselves.
And work towards that. Start saying no, start eating healthy and exercising, because that's a key part of it as well. I absolutely love it. And then last year I started A Little Perspective, which is a small publishing company and we have a podcast, we do books and we do public speaking as well. All focused on advocacy for marginalized communities.
[00:34:35] Carole: Can you explain a little bit your business model, coming out with these amazing books that have so much information? How did you come up with this concept of, first of all, little perspective series?
[00:34:49] Angela: One of my mentors was a part of an anthology, which is a book of essays written by different people, and she decided to lead her own, and hers was called Finally Free. And it was stories of women and men who have overcome something big and they feel free from having overcome it. And she asked me last year to be a part of it. And I said, no, thank you. And then she came back and she was like, no, I really need you to be a part of it. And being she was an important person in my life, I said yes and realized that it was fear that was letting me say no.
And so I wrote my first chapter and the experience that I had as a part of that, I can't even put it into words because not only does writing that set you free already, putting it out there for the world, while it does make you feel like you wanna puke, it also helps you to see that what you went through is going to inspire and motivate others, and it does.
And then that coupled with the group experience of being with others who are going through the same thing, who are having all of those same emotions. Then to see those people, myself included, go on to do big things because it's like something became unlocked. Once you've done that big hurdle, then you see all these other things that I wanted to do.
Oh, I can do that. That's when the idea of the two books came to me to do. The parents, I think, was the first idea because 80% of children with dwarfism are born to average height parents. So that means that it doesn't run in the family. Often, no experience with it because it is such a rare condition. Not everybody knows a little person.
And because of that and because of the way that medical doctors can be inexperienced as well, there is often a traumatic beginning to this child's life, whether it's in utero or directly after. Once it's found that the child has dwarfism, it's not uncommon for the suggestion to be to terminate the pregnancy. Simply because of the dwarfism, not because of any greater complication. And I felt impassioned to tell these stories for the 80%, my goal with this book was so that if another parent were to read it who finds out that their child has dwarfism, they are to see, okay, this diagnosis isn't the end of the world.
There may be some medical complications, but they're not as complicated as some of these inexperienced doctors are making them out to be, they're certainly not gonna lead to being fatal necessarily, and all these scare tactics that it feels like some of these medical professionals put on. I really wanted a resource for these parents, but then also family of these parents. Because I have had aunts and grandparents reach out to me and say, do you mind if I ask you some questions? My sister just found out that her child is gonna be a little person. I don't wanna bother her cuz she's going through all this, but I wanna calm my fears and then maybe I can help calm their fears. So I wanted to provide a book that could really help that whole thing.
And then also the same though with the lady's book, because, as we're raising our kids, like you said earlier, struggle with how much is too much sheltering, how much is enough? We don't want our kids to suffer, but there's gonna be suffering no matter what. But being a little person, you have an extra layer.
And so I wanted these ladies to tell stories of some situations that they overcame themselves. And survived and are now thriving so that these parents could again see that, oh, okay, yes, they'll be better in some senses from. So that's how the books started. And then what I'm doing now is helping others who have the same kind of ideas lead their own anthology. So I have a trans woman, we are working on a book right now together, and then I have a book focused on the disparity of healthcare for women of color that I'm leading with a visionary. The idea of A Little Perspective is that considering myself a humanist, I think that often all it takes is a little perspective to understand somebody else's world.
And if you can understand someone, then you can empathize. And if you can empathize, then you can either not judge or you can help. And both of those things are key to me for those of us in the marginalized communities. There's a phrase called inspiration porn, and that tends to refer to average people using person with a disability, them experiencing their either average day to day as inspiration. I've been told that I'm so proud of you when I'm at a grocery store because I'm at a grocery store. But then it also goes towards exaggerating someone's disability in order to, you know, clickbait, so to speak.
[00:40:30] Carole: What's clickbait?
[00:40:31] Angela: Making things much more dramatic than they actually are in order to create a very pitiful image to create viewers, readers, whatever it may be.
[00:40:44] Carole: I see, to attract them, to listen or buy a story. You wrote about your experience with the doctor who said to you that you're so awesome because you were taking care of your daughter, Cindy.
[00:40:57] Bobbie: Yeah, the doctors. They were like, just take her home, love on her, don't look for anything else to help her. And he said, you do so much for her and you're just so awesome just going around doing this.
And to me, I was like, but I'm her mom. That's what I'm going to do, any mom would do, just cuz I have dwarfism doesn't change the way my brain's thinking as a mom. It just surprised me.
[00:41:25] Carole: Yeah. Angela, tell us a little bit about your podcast.
[00:41:29] Angela: The podcast started a couple of years ago. October is Dwarfism Awareness Month and in the dwarfism community, it's not uncommon for us to post facts and information to educate throughout the month on social media. I thought, well, I can interview people in the dwarfism community, like my Facebook friends, people that I know, and show the different ways that in some ways we are the same, but then in some ways we're not. You had asked if we have a disability and I think in some senses of the word, especially with achondroplasia, because we typically tend to be able bodied, we're not usually in a wheelchair.
It is kind of a mix of an invisible and a visible disability. It's obviously visible cuz I'm four foot tall. But people assume that that means that there's nothing wrong. And while I'm lucky and I don't really have many health issues, a lot of people with achondroplasia do. But then there's also just the things that come along with being a person who's only four foot tall. Fountains, bathrooms, doors, day-to-day things that can be complicated. So there's definitely a disability aspect, and I wanted to highlight that, again, in a very humanizing, non-pitiful way to show, hey, we're just like you, but we do have these certain things and if you know about them, you can advocate for us as well.
And so for that month, I interviewed, gosh, I don't know, 20 or so people. With different types of dwarfism. Not just achondroplasia cuz there's 200-400 types. And found that I enjoyed it. I really liked it and continued to do throughout the year, interviewing people, just posting it on social media and decided that it was something I wanted to continue, but that I wanted to step into the disability world.
We are larger as a disabled group than we are as a dwarfism group and a lot of disabilities have a lot of the same needs, which is why the ADA came about. My thought was if we could interview different kinds of disabilities and conditions, then we can start to, again, humanize these things, start to show the world that while yes, we're asking for accommodations, what we're asking for isn't that much, and it's more than just one or two people.
It would help a lot of people. And this season, this year, I asked one of the authors in the ladies book, Samyuktha, to be my co-host, and so we've been doing it this season together and she also has achondroplasia. She's an American who is from India, and it is just a platform for people with disabilities to use their own voice to speak for themselves. Really humanizing each of these different kinds of conditions.
[00:44:37] Carole: So my last question, I'm gonna ask Bobbie first, who is your hero?
[00:44:43] Bobbie: Gotta be Angie. Who else could it be?
[00:44:47] Angela: Good answer.
[00:44:48] Bobbie: Yeah. Who else? Yeah, because she has come through so much and she's still like Wonder Woman flying through it, and she's this leader of all these people and she doesn't realize how many people she's a leader of. She just amazes me.
[00:45:07] Angela: Who is my hero? My papa has always been huge. My mom's dad was very much a father figure in my life, very much the keystone. He was the solid rock. If all else fails, papa's there, so I would definitely lead with that. We have so many women in my personal life that have begun to mentor me over the last few years and really provided so much kindness and guidance. And then I'm a big Ruth Bader Ginsburg fan. I appreciate all that she has done and the way that she did it.
As a mom, it's hard to do all the things and not feel like a failure as a mom and her reminder that you aren't going to be able to do all the things, it sticks with me because I want to be an amazing mom, right? Who doesn't, but I also have a calling to be a leader, as mom says, if that's what we wanna call it.
[00:46:15] Carole: Where can people listen to your podcast? Where can they buy your books and how can they find you if they want some coaching?
[00:46:21] Angela: A Little Perspective podcast is on YouTube. It's a visual podcast, and next season it will be on all the audios as well. The books are on amazon.com. And life coaching, I have a website, it's either purposebyang.com or alittleperspective.org. Both go to the same website and there's a ton of information about me, my coaching packages, the books, and all that kind of stuff on there as well.
[00:46:51] Carole: Great. And we will put everything that you just said in the show notes so people can refer to that. I wanna thank you both for being so honest and sharing your wisdom. That's what this is all about, and I really appreciate you both being on Wisdom Shared.
[00:47:08] Bobbie: Thank you.
[00:47:09] Angela: Thank you.
[00:47:15] Carole: I may choose my guests because they have kids with some type of challenge, but this podcast is not about the label. Rather, it's to discover the reality behind stereotypes based on age, religion, stature, diagnosis, or whatever. The challenges are highlighted, but only to bring forth the idea that we all have challenges of one sort or another.
And how we manage them or deal with them is unique and worth sharing. I believe we can learn from each other so that a community of storytellers can perhaps make for less loneliness, less marginalization, and less pigeonholing. One way to do this is to ask questions. I admit, I find it fascinating to listen to how these amazing guests who I find in so many different ways, how they perceive their own realities and how they came to see the world from their perspective.
It's like I'm discovering the nuggets of wisdom that would be buried if not for these conversations. I can now share my newfound bird's eye perspective as these guests share their realities. Maybe you are wondering how I met Angela and Bobbie. Well, I love sharing how I met my guests because each encounter is a story in itself, and in this case, a coincidence, if you believe in such things.
Season two episodes one through three were interviews with the Curwins. Jillian, a little person and her mother Audrey, who is average height, maybe a little taller. Taller than me, at least. And when I posted their episodes on a social media group that consists of a collection of pediatric occupational and physical therapists from all over the world, run by the visionary, a New Zealander, Mindy Silva, a member of that collective, Sally Vicary, reached out to me to say she was the mother of twins, one of whom was a little person.
She explained to me how she had recently written a chapter in an anthology that included stories from 14 other parents of children with dwarfism. Angela published this book, Special Delivery from Pregnancy to Toddlerhood in her Little Perspective series. Angela had already been interviewed on many podcasts, including Always Looking Up, Jillian's podcast.
Another coincidence. But when I spoke with Angela, I realized that I wanted to hear her mother's perspective too. So I invited Bobbie, Angela's mom, to join us in conversation. I would be remiss not to include here that during the interview I told Bobbie and Angela that I found them very inspiring because I did. But then I caught myself, worried that I'd crossed the line into inspiration porn. So this is how that went down.
You are both very, if I say you're inspiring, that's bad, right? Because, but you're inspiring is like, I mean, I'm talking to you shoulder and up, so ,you know, and I'm talking to you as if you're just average height. Cuz you are right now to me. And I'm sorry to say you're inspiring. I apologize.
[00:50:12] Angela: No, there's nothing wrong with being inspiring.
[00:50:13] Bobbie: There's nothing wrong with that.
[00:50:15] Angela: It's just being inspiring for the right reasons, as long as you would say the same to someone who didn't have a disability, you know?
[00:50:24] Carole: Yeah, absolutely. It's how you think and how you've gotten through the challenges that you've gone through, and everyone goes through challenges and then, you know, some you've done well, some you haven't done well, but you're just able to talk about it and wanna help other people all the time. It's very, what's the word? Very, it's like a, it's like a bright light.
[00:50:44] Angela: Thank you for your patience and all the changes and everything.
[00:50:48] Carole: Oh, no. I'm so grateful that we got to do this. I knew it would be worth the wait.
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