Friday, June 21, 2024

Episode #72: Living With Spina Bifida: A Personal Journey

Show Notes: Have you ever heard of spina bifida? In this week's edition of the Water Prairie Chronicles, we’re talking with Melissa Ortiz, Senior Advisor for Able Americans. She’s sharing her story of living with a disability and how she has become a voice for others facing similar challenges. Join us as we hear about Melissa’s journey and gain insight into the power of advocating for yourself and your community. In this interview, Melissa, who has spina bifida, shares her personal journey and insights into living with the condition. The discussion covers various aspects of her life, from childhood challenges to her experiences as an adult. Melissa emphasizes the importance of understanding and educating oneself about spina bifida. She highlights that individuals who face difficulties in school can often become exceptional teachers due to their unique perspectives. Drawing parallels with historical figures like Albert Einstein and C.S. Lewis, Melissa discusses how those who perceive the world differently can excel in their fields. Melissa delves into her professional life, detailing how spina bifida has influenced her career. She speaks about the common health issues associated with the condition, such as bladder infections, which can pose serious risks. Melissa shares her personal struggles with health challenges, and she offers advice to individuals diagnosed with spina bifida, urging them to join support groups for a sense of belonging and guidance. For parents of children with spina bifida, Melissa advises seeking advice only from those who have firsthand experience with the condition. The conversation also touches upon workplace accommodations and the importance of ensuring accessibility. Melissa emphasizes the significance of understanding the Americans with Disabilities Act (ADA) requirements and encourages individuals to advocate for their needs. She discusses her involvement in a project to create an app that will help people find resources related to their specific disability needs within their local areas. Overall, Melissa's interview provides valuable insights into the challenges, triumphs, and strategies associated with living with spina bifida. Her candid discussions and advice offer guidance and support for individuals facing similar circumstances and shed light on the importance of awareness and inclusion. Connect with Melissa: Twitter: @dcbelleonwheels Instagram: @dcbelleonwheels Facebook: @melissa.d.ortiz Email: mOrtiz@nationalcenter.org Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

A Late Diagnosis of Spina Bifida
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A Late Diagnosis of Spina Bifida

Show Notes:

Have you ever heard of spina bifida? In this week’s edition of the Water Prairie Chronicles, we’re talking with Melissa Ortiz, Senior Advisor for Able Americans. She’s sharing her story of living with a disability and how she has become a voice for others facing similar challenges. Join us as we hear about Melissa’s journey and gain insight into the power of advocating for yourself and your community.

In this interview, Melissa, who has spina bifida, shares her personal journey and insights into living with the condition. The discussion covers various aspects of her life, from childhood challenges to her experiences as an adult. Melissa emphasizes the importance of understanding and educating oneself about spina bifida. She highlights that individuals who face difficulties in school can often become exceptional teachers due to their unique perspectives. Drawing parallels with historical figures like Albert Einstein and C.S. Lewis, Melissa discusses how those who perceive the world differently can excel in their fields.

Melissa delves into her professional life, detailing how spina bifida has influenced her career. She speaks about the common health issues associated with the condition, such as bladder infections, which can pose serious risks. Melissa shares her personal struggles with health challenges, and she offers advice to individuals diagnosed with spina bifida, urging them to join support groups for a sense of belonging and guidance. For parents of children with spina bifida, Melissa advises seeking advice only from those who have firsthand experience with the condition.

The conversation also touches upon workplace accommodations and the importance of ensuring accessibility. Melissa emphasizes the significance of understanding the Americans with Disabilities Act (ADA) requirements and encourages individuals to advocate for their needs. She discusses her involvement in a project to create an app that will help people find resources related to their specific disability needs within their local areas.

Overall, Melissa’s interview provides valuable insights into the challenges, triumphs, and strategies associated with living with spina bifida. Her candid discussions and advice offer guidance and support for individuals facing similar circumstances and shed light on the importance of awareness and inclusion.

*******************

Connect with Melissa:

  • Twitter: @dcbelleonwheels
  • Instagram: @dcbelleonwheels
  • Facebook: @melissa.d.ortiz
  • Email: mOrtiz@nationalcenter.org

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/


Meet Today’s Guest:

Melissa Ortiz serves the National Center for Public Policy Research as the organization’s Senior Advisor for the Able Americans Project.

In her role, she develops the project’s strategic plan, marshals key resources and helps oversee the implementation of the project. She also assists the National Center’s president in identifying necessary contractors, employees, strategic partners, stakeholders and donors and serves as a key spokesperson.

Melissa identifies as a “happy warrior” and is enthusiastic about driving a dialogue between people living with disabilities or chronic illness and policy makers across the political spectrum, especially conservatives. She has worked in the classroom in Nashville, Tennessee and in the nonprofit sector in New York City and Washington, DC. She was honored to serve as President Trump’s Commissioner of the Administration on Disabilities. The first female board member of The Conservative Caucus, one of the oldest conservative groups in existence, she currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.


Episode #72: Living With Spina Bifida: A Personal Journey

A Late Diagnosis of Spina Bifida

(Recorded June 15, 2023)

Full Transcript of Interview:

Tonya: Welcome everyone. We appreciate you joining us for this episode of the Water Prairie Chronicles. I have a guest with me today who I have been looking forward to meeting a long time and introducing you to. We actually met several months back, maybe even more than several months back, um, and had so much fun talking that we never even recorded. We were, we were enjoying our time together so much. So today we promised that we would hit record so that we could share this, this part of it with you.

So, so Melissa Ortiz is with us. She is the senior advisor for ABLE Americans. ABLE Americans is a program created to support Americans living with intellectual developmental and physical disabilities, and they also create policy to support them. So Melissa, welcome to Water Prairie.

Melissa: Thank you. Thank you for having me.

I, um, know we’re, we’re going to get into, um, the topic today. We’re actually going to go back, way back into her childhood and, and pull out, pull out some stories there. But before we get into that, this season, I’ve been asking each of my guests to prepare three facts or pseudo-facts to share with you. And, um, so audience you’re listening.

To hear which of the three things that she shares are going to be true and which one you think is the lie. There will be one lie hidden in the group. And this is the game of two truths and a lie. If you’ve played it in youth group or somewhere along the way, you may have, may have come across it. Um, but Melissa, do you have your facts or pseudo-facts ready to share with us?

I do. I do.

What do you have?

Okay. I am a Gilmore Girls aficionado. I sat next to Britain’s Prince Edward at a state dinner. And I’m semi-fluent in Hebrew.

All right, listeners, go to the comments if you’re watching YouTube and write your guess there. If you are not watching YouTube or want to wait to do this, listen to the end of the podcast and then go to either Instagram or Twitter and find the post that matches this episode and put your guess there.

And a week after we post it, we’ll post the answer so you can come back and check to see if you got it right or not. And if you are guessing, I’d like to know how many you’ve gotten right so far. So, so leave, leave us a comment on it. So Melissa, today we’re going to be talking about a topic that I have not been able to bring to the podcast yet, and that is the topic of spina bifida.

Um, so you have a personal journey with this and, um, so I’m going to, I want to start Just because for me, I am not that familiar with it, and I’m sure we have some listeners who aren’t. Um, can you give us just a general description of what Spina Bifida is and how it might be different for different people?

Sure. There’s Spina Bifida, and then there’s Spina Bifida Occulta. Which, there’s the first type of spina bifida. What spina bifida is, is a defect in the neural tube. In other words, the whole brain and spinal cord network. That is the neural tube. And so, it, when you have regular spina bifida, it usually presents with the spinal cord being outside the spinal column and sometimes outside the skin at birth or barely covered with skin.

It usually often presents with hydrocephalus so that the baby needs a shunt. Or, you can be like me and be misdiagnosed as having Cerebral Palsy and have Spina Bifida Occulta that they did, I did not, did not receive an official diagnosis of having Spina Bifida Occulta until I was over 40 years old and living in D. C. I was 42 years old when they finally diagnosed it. So, I grew up thinking I had cerebral palsy, but the more research that I did, the more I knew that that was just not the right diagnosis. And we also did not figure out until I was an adult that I had hydrocephalus. Uh, I, everybody always talked about my head being big, too big for my body and that, and I, and I would joke and say, well, that’s fine.

Jackie Kennedy Onassis had the same problem and she always looked great in pictures. So maybe that means I photograph well, uh, my mouth has been a huge blessing. My quick tongue has been a huge blessing, but also a huge curse growing up. But getting back to the spina bifida, it is, it can cause anything from a limp to quadriplegia with being paralyzed and for all four limbs. For me, because it was not obvious, we never, and even the cerebral palsy diagnosis was not labeled, not put on me as a label until I was about six. And starting school and needing services and, um working with the March of Dimes as a poster child and all those things and so you sort of have to have some sort of diagnosis. And so that is, that’s how that goes.

Growing up not being like everybody else was very interesting. It, um, I, the, you know, again, thinking I had one disability and then finding out it was quite another has, was very shocking as an adult. Uh, but as a child, I just knew that I wasn’t included in everything that everybody else did. Um, I was not a nice child.

I, we had these humongous holly bushes in our front yard and I used to sit inside the holly bush and throw berries at people when they walked by. Like I said, I was not a nice child. I got my share of spankings and I’m deeply grateful that my parents, you know, disciplined me because I would be impossible now.

My husband’s not home yet to tell you just how impossible I already am, but I’m grateful that my parents made the decision early on to raise me just like they’d raised their other daughter, have expectations, and there were things that they didn’t know that I wasn’t supposed to be able to do that I learned how to do. So that was pretty exciting.

So let me, let me go back. So we have spina bifida and we have spina bifida. What is the third word?

Occulta.

Okay.

It’s O C C U L T A. And it means hidden. In other words, it’s inside, the malformation is inside.

That’s what I was going to ask. Okay, so, so is it more in the brain? Or is it just that it doesn’t protrude?

It can be in the lumbar, where the, where the tube didn’t close all the way, but the bone in the skin closed around it. Or it can be in the neck.

Okay.

And mine, my malformation is where my brain stem and my brain and my spine, or my spinal cord all come together. And it really does look like a golf ball sitting on a tee.

And it presses, there’s a valve that’s a corkscrew in shape, um, that controls the fluid between the head and the spine. The cerebral spinal fluid. And I at any given time either have too much fluid in my head or not enough. So I can’t have a shunt because I don’t remanufacture fast enough. I had meningococcal disease as a baby, and it makes perfect sense that I have spina bifida because I had meningococcal disease.

It’s a form of meningitis that you can, you can go to sleep perfectly fine, just kind of sniffly and just not wake up. Um, My mother caught me before I went to sleep and they were able to treat it. I was about nine months old and then I had I’ve had bacterial meningitis in high school, and then I had viral meningitis twice when I was teaching school, and it was, it, you know, and it all makes, and somebody said how could you possibly have got meningitis so many times, but when you understand it from a spina bifida perspective, the valves and the meninges are not formed properly, so they can’t do their job, and so they get inflamed.

Um, I always know, part of, part of my service dog’s job is to tell me when there’s too much pressure in my head. It’s something my chemical smell changes and she can tell me. But I also have gotten to start to feel it. I, I have a petite mal seizure often when that happens. And I start to feel like somebody is taking my head and shoving me underwater against my will.

Um, I can hear everything that’s going on around me but I can’t respond. And if you’re not prepared for it, it can be very disconcerting because I just stopped talking.

Now is that because of the hydrocephalus?

Yes.

Is that the part that causes that? Okay.

Yes. And it’s not the spina bifida part, it’s the hydrocephalus part.

Right. Now, My next question for you was going to be what it was like growing up with Spina Bifida, but you didn’t grow up with Spina Bifida because you didn’t know that’s what you had. Right, right. But you did mention that. Yeah. Yeah, I was going to say, you did mention that, um, they thought it was cerebral palsy, but not until you were older. So when you were an infant, were there any signs of anything going on?

Yes, I didn’t sit up. I didn’t, um, my movements were awkward. I had no balance. I didn’t walk until I was almost four. And then, and I wore the little short leg braces, um, with the white high-top shoes. Uh, and you haven’t, I, I, it always amazes me how cruel kids can be to each other.

You haven’t lived until you’ve been in four-year-old kindergarten at your uncle’s Baptist church and the whole class is standing around you chanting, baby shoes, baby shoes. Because I had the white high-top shoes on with my braces as a four-year-old. And, and that, that’s just, I don’t think, it’s cruel, but it’s also, it comes out of ignorance.

And, growing up with a disability, growing up different in any way is so difficult for a child. Whatever it is that separates you from The from your classmates as being different can be very difficult and then I had the added Um, I know that we’re going to get into this and one thing I do want to circle back very quickly and say that Not everybody who has hydrocephalus either, so that’s a very important distinction I want to make.

I have a great friend who has spina bifida, and hers was so slight that you would never know it. You would think she had sprained her ankle. Um, and she has no other evidence of it at all. But, I was born in 1966, and in that time period, In the South, if you had a child with a disability, most often they were institutionalized. And my parents were having none of it. And my mother made a very brave decision in upper middle class, white gloves and party manners Atlanta, that I was going to participate in everything else my peer group did.

And didn’t always make everybody happy and it wasn’t always fun. But I’m deeply grateful that she did that. My father died when I was five. So that’s why you’ll hear me talk about my mom raising me. Um, he was heartbroken by the disability, but he also, he loved me unconditionally. And I do know that, um, that was, that’s been made very clear to me throughout my life.

My mother was an amazing role model because “I can’t” was not an option. Uh, my nickname is the Queen of Creative Alternative. And it wasn’t meant as a compliment when it was plastered on me, but it has served me incredibly well in getting things done in life. Yep. And so that is, that’s that. Therapy, therapy, therapy, therapy.

Physical therapy, physical therapy, physical therapy. Other kids got to go to the beach all summer. I went to physical therapy five days a week during the summer because mom didn’t want me doing it during school because she didn’t want me to miss anything. Uh, I come from a long line of teachers.

Uh, my, I was a teacher, my mother was a teacher, my grandmother was a teacher, my great-grandmother was a teacher, and my great great grandfather was a teacher. And I think his father was also a teacher. So, I mean, that’s six generations. So, that, that’s a nice way of saying that I come from a very long line of bossy people.

And, and, but at the same time, I also come from a very long line of people who value learning. And my mom’s mom, when she realized that I maybe had a little more going on in the brain than other three-year-olds did, she taught me to read. And it was the best thing and the worst thing she could have done.

Reading has been such a, an escape for me, but it has also been, when I started first grade and I was reading on an eighth-grade level, my teacher wasn’t real thrilled when they showed up with this kid that wanted to check out Chitty Chitty Bang Bang and then proceeded to read it aloud during story time. Not what she had planned.

No. Now you mentioned that you have an older sister. Um, what, well, you had mentioned that you had a sister. I’m assuming that she was an older sister. Um, can you, can you describe like what it was like growing up having a disability and, um, you know, having a sister around, um, sounds like from what you said when you were five, it was just, just the three of you or were there other siblings too?

After, after my dad died, it was just the three of us. So my sister was nine and a half when I was born, closer to, closer to ten. She decided very quickly, my mother was very, very sick when, um, she was pregnant with me.

And she was, actually, they tried to convince her to have a DNC because she was placenta previa and hemorrhaging. And my parents were not Christians at that point, but they just made a decision that they were going to have a baby. And They had been trying for five years to have me and so my mom went to bed and finally at what they could kind of calculate because my parents had been apart the summer that my mother got pregnant, she was away in graduate school.

So there were only minimal, you know, minimal number of times that they could pinpoint. So when they could pinpoint the kind of the end of the seventh month, they just told my mom, they said, we have to take this baby right now or you’re going to die. The baby’s not going to make it. We can’t find a heartbeat.

So, my sister, who is very athletic and very, um, She’s an Olympic caliber equestrian and she now has her own stables where she trains young riders. She is, um, one of the strongest women I know. And all of a sudden, She went from being the only child to her mother being in the hospital with the little upstart that was coming.

The little upstart coming early so nobody was prepared and when they brought me home I lived in a turkey box for three months because there was no bassinet. And my mother had to have, my father was a meat, a meat packer, and meat salesman so that’s why we had the turkey boxes.

Okay, I was going to ask but…

Yeah, exactly, so I better give some context on that. And… They, you know, she, I, you know, as I grew up, and after I became an adult, I suddenly understood her perspective. I would not have really taken a great liking to me either if I had been in her shoes because her mom was in the hospital for six weeks before, you know, I was born.

I was born, mom has to have, yeah, mom has to have a hysterectomy, a cesarean section and a hysterectomy to save her life. I live, and I come home, and I’m barely four and a half pounds, and I have all these needs. So she, um, she kind of got shoved to the side, and I became the center of all family dynamics.

And that is the way I’ve seen so many families, and I have such a heart for siblings of disabled children. Because they get shoved aside, and it’s not to be mean. Uh, it is… It’s, it’s out of necessity and it takes a very wise parent to see that, that, that non-disabled child’s need, child’s need and balance it with the disabled child’s needs.

Right. Right. Um, I want to make a little note here, um, for our listeners, Melissa and I are going to talk again about, specifically about siblings and, um, parenting more than one child. So, um, So, watch in a couple of weeks after this one comes out, we’re going to have that one as well. So, um, so that was actually a good, good little, um, plug for, for, for, for our next episode with you.

Um, but let’s, let’s go on to, um, I’m thinking, so you, you had the needs early, but they weren’t really identified as anything specific, it sounds like.

Exactly.

And then you’re probably getting into school about the time that you got the, the wrong diagnosis.

Yes. Yes, and I started first grade in a wheelchair. Uh, and…

Okay, this wasn’t asked, what your mobility was.

Surgery, yeah. I had surgery. I was on crutches with little short leg braces before that. And then I had surgery the summer before, um, first grade. I started first grade in a wheelchair. I, after spending the summer in plaster from the hips down with a bar between my knees and a bar between my ankles, I looked like a triangle.

I try to find celebration and excitement in even the most mundane things. Living with Spina Bifida and having to make daily accommodations, if I don’t celebrate it, Some days it gets so frustrating that I just want to bang my head against something really solid until I have a nice big goose egg.

Yeah. So you had, so you had the surgery, you started school, you’re in the wheelchair. Did you remain in a wheelchair after that point or did you regain mobility?

I stayed in the wheelchair for the first half of the school year and then, I started, I went back to the crutches and the braces, and then by the end of the school year, I was able to be without the, without the braces, but I used the crutches all through that year, and then by the next school year, I had, I was just mobile.

I had bad balance, and I walked with my hands out. Um, I, um, I asked at one point, I said, why didn’t everybody, anybody ever have the idea of having me carry an umbrella, because that would have kept my arms close to my body while maintaining my balance. And this physical therapist looked at me and said, I’d never, I never thought about that. I said, well that’s what tightrope walkers do. Yeah. And she said, no, tightropers hold their umbrella out like that. I said, well that would have been kind of cool.

You probably, from what you’ve described, you probably would have enjoyed that.

Absolutely, and the, you know, going back to being in first grade in a wheelchair, they wanted to put me in the special education classroom.

And my mother, my dad had died by this point and my mother said absolutely not, her brain is fine. Um, and she went and talked to the first-grade teacher that I had been assigned to and the first-grade teacher said, I am perfectly fine with having her in the classroom as she is. Uh, we lived right across the street from the school.

So if there was any emergency, my mother could come and handle it. Or somebody that I knew and trusted could come and handle it. Well, um, what they didn’t count on was the game that my classmates would make out of sending me home at the end of the day. Take her to the top of the hill and hit, and let go.

She’ll make it home. You know, there was a retaining wall at the end of the driveway. I didn’t always stay in the wheelchair when I hit the retaining wall. So I had to learn to wear a sash around my… Around my waist in the chair. So that didn’t fall outta the chair.

Did you want them to push you down to your home?

I loved that. It made me feel included. I felt included and I felt like we were playing. Um, I have since talked to some of those classmates and they were like, well, we just wanted to see what would happen if we did that. As an adult, it’s really funny as an adult, you look back on some of the things that you did as a child and you sort of think to yourself, that was really not very nice, or not very helpful. But it was really entertaining.

Well, at least they’re, they’re honest. That was, that was what it, what it was. And, and like you said, you, you like feeling included, but I’m thinking that retaining wall, there’s got to be a story behind that for you to have mentioned that.

We made our garage into a den and so, and put a, and laid sod in front of it and put a retaining wall at the end of the driveway so that.

We wouldn’t drive, so that my mom wouldn’t drive off the driveway into the grass, or my dad wouldn’t drive off the driveway into the grass. And, um, my sister, as I said, she was an Olympic-caliber equestrian. And she used to put me on the retaining wall and practice jumping over me.

Wow.

Yeah. Yeah. Yeah.

So, um, I’m assuming that you were pretty fearless as a child.

Very much so. And I was very … How do I put this? I always had a reason for everything I did. And it wasn’t because I wanted to. It was always, well, I thought this was a better idea. Hence the Queen of Creative Alternative. Um, Right. There’s a documentary that just came out on, um, Amazon called Shiny Happy People.

And it’s about the Duggar family and about a man named Bill Gothard and the cult that he started. And my mother was very drawn into that in the early 70s when I, right after my dad died. And so, I endured a lot of spanking to get the rebelliousness and the refusal to obey out of me. And, Mom hasn’t ever said this, but other people, like my, I have a best friend that I’ve had since we were three and her mom actually said to me one day, she said, you know, as you grew up, I realized that it wasn’t that you were disobedient, you were trying to think of the most efficient way for you to get it done, for you to have the energy and to get done what we were asking you to do.

And she said, I, she said, I probably need to apologize to you because I told your mother you were rebellious and disobedient. And I encouraged her and her discipline of you. And she said, I’m not sure I was right. So that is. That is something I’ve always found very interesting is, but I, I, I’ve had to live in a lot of forgiveness and go through a lot of emotional therapy to forgive the trial and error.

Because I think that, this is something that I would say to anybody with a, who has had a lifelong disability, I think parents do the very best that they can and with what they have to work with. I don’t think anybody intentionally hurts their child with a disability. But I also think that, especially when I was being raised, there wasn’t enough information out there about limitations or lack thereof.

And maybe that’s not a bad thing. I didn’t know until I was in college that people with a neurological problem are not supposed to be able to chew with their mouth closed. And because of the social circle that my mother and father moved in, we went to a lot of fancy dinners. And the, Amy Carter was in, in the governor’s office as the first daughter when I was, she’s not, we’re about the same age.

And, uh, I got to go to dinner with them one night with her. And it, to my great embarrassment, we, we’d been working on table manners all week. And I understood the forks and I understood the napkin and everything. Then just before the meal starts my mother produces this little gold easel with the calligraphy sign lips together, please And I got to sit in the governor’s mansion with this placard in front of me lips together, please and that that that placard went with me for about three years at every meal that I ate at home or away from home to reinforce the idea that I needed to have my mouth closed when I chewed and it worked it worked. Nobody’s ever turned me away because I had bad table manners.

Good. You’re making your mom proud even today with that. And you don’t have to have a reminder in front of you anymore. You, you mentioned that, um, the neighbor’s mom. Who had said that she felt like she needed to apologize for saying that you were being disobedient or willful or whatever.

Um, I think, I think the way that you worded that describes a lot of kids who have disabilities. The um, the skills that are needed to continue with your peers through different stages as you’re growing up. If you have a disability, if you have a challenge, however you want to term that, you are having to be more creative to get that same result.

And so your learning skills to navigate a little different path, to still seem like you’re following that same path. And, um, and I, I mean, as a parent, I did the same to my son. where it seemed like he was being disobedient, but he wasn’t. It’s just, it’s an outside-the-box thinking that he was using to get, to get the job done.

And he and I have had that apology time as well. So, um, but, um, but the number of teachers through the years who would report the willfulness or the disobedience, And, um, and somewhere along the line, before he and I even came to an understanding, I had started asking him the questions. Um, when you did this, what were you thinking when you did it?

And it helped me understand the motive behind the behavior, instead of, instead of superimposing my own thought of what the behavior meant. And I learned a lot once I started asking that question, that 9 times out of 10 had nothing to do with any type of disobedience. In fact, it was most of the time a very kind-hearted gesture that just went wrong or didn’t look right when it was happening.

And so I think, I think that’s, that’s what’s happening. But looking forward though, the skills that are developing are strengths that, that each person that’s, if you’ve gotten to that point where you can. Start devising your own creative way to get to things. Those are skills that are going to last your lifetime with it.

So, um, so yeah, anyway, I just wanted to, a little, little tangent there, but it just, just was, was connecting a few thoughts that I had had, um, on that, that topic.

No, I think it’s, it’s so important, um, children with disabilities have self-image problems anyway, and then to be told that they have a character flaw such as, you know, willfulness, it’s painful.

Well, it’s frustrating because you’re being judged all the time. Incorrectly.

Exactly. Exactly.

So, um, we’re talking about thinking creatively and all. Um, can you share any adaptations or accommodations that you’ve made in your daily life, but also maybe as a child with school even? Um, were there any accommodations that you were using?

I started school before the Rehab Act, before the Americans with Disabilities Act, before accommodations were really a thing. Because I didn’t have an intellectual disability, it was thought that I didn’t need an accommodation of any kind. Um, when I got to high school, I had a teacher who had her master’s in adaptive physical education, or as it was called at the time, physical education for the handicapped.

And… She, I was a sophomore when I got to her class, and she pulled me aside and she said, Listen, I’d like to try something with you that might, you know, she said, You’re the first student I’ve had with a physical disability, but you’re not going to be the last. And I have this master’s degree, and I’d like to get, to have you be in charge of all the teaching of the rules of all the sports we’re going to learn.

And she said, instead of Playing the sport, you will go to the library and learn about the history of the sport, how to referee the sport, and she said, and then you’re going to sit on the sidelines and be the sideline sportscaster and referee for all the, all the games that we play of the sports. Gave me a lifelong love of…

sports broadcasting. Um, a lot of people are really surprised that I didn’t go into play-by-play. Uh, that’s part of how I paid for college was doing play by play with our college radio station. Football and basketball games. Uh, she gave me a love of management. I managed basketball in high school and a little bit in college, not as much in college, but um, and did athletic training.

She, because she had a vision for physical education being more than just about what I could do on the court, and it being how I could participate, and it was so much fun. I, it was discovered early on that if you stuck a microphone in my face, I could talk ad nauseam about anything. My very first public speaking experience was when I was in the third grade and we were doing, and this was an accommodation too, as I look back on it, it just never occurred to me that this, until just this moment, that it was an accommodation.

I knew that I was going to look awkward doing the, the folk dancing that we were learning and, and that we were going to dress up and do so dress up as pioneers and do. So she had me dress up as a pioneer lady in a calico dress and I called the dances with the, with the bluegrass band and with the caller.

He taught me how to call and then. Before each dance I got to go and tell what the next dance was and just do a little 30-second history of it She wrote everything. It was just my job to read it It gave me, and I’m grateful for the teachers and for my family early on that they discovered that I had this self-confidence to be in front of people, even though I had a very poor self-image, I loved being in front of people.

Um, I love, to this day, I love stand-up comedy and I love public speaking. If I ever leave policy, it will be to do full-time public speaking. Because I just, it, some people get really scared when they go on the stage. The more people that are in the audience, the less afraid I am. So it’s exciting to, to, to, as I sit here and think, I hadn’t thought about this in a long time, and I thought about it a little bit as we were, as I was looking at the questions.

To have these teachers that saw in me a way that I could participate and that I was good at. That they didn’t have to teach me how to do it, it’s something I just automatically understood.

Yeah.

So.

So the, so you had a pre-adaptive PE teacher in high school. Because that wasn’t called that then. Um, so you had the accommodations with modifications happening there. Um, but because, um, you didn’t have an intellectual disability for school, I’m assuming you didn’t need any modifications.

No, I did everything everybody else did. Another accommodation that I received when I was in college and again, this is, I, the ADA, I graduated from a college in December of 89 before the ADA was passed in the spring of 90 and it I Have a professor who I’m still very close to to this day who said to me he said You’re really struggling with written tests, aren’t you?

And I said, yes. I said if I can, if I’m sitting down to write an essay, I’m fine. I said that there’s something about knowing I have to answer five essay questions in an hour. I just get completely… I’m completely locked up. That’s the only way I know how to describe it to you. He said, well here’s what we’re going to do.

I want to try a little experiment. He said, I want you to come. He said, I want you to come to class the day of the test. I want you to come to my office that afternoon. And I’m going to give you the tests orally. And let’s see how they go. And after that my grades improved dramatically. Um, not because the material was hard, but because I was failing the test.

Because I’ve had test anxiety and because I had, um, because I had this, and that is, um, the inability to manage time is a part of having an intellectual developmental disability. Um, and I, once I was able to do it orally, I literally would finish a five-question essay test in 15 minutes. Because I could just give the answer and be done.

And I could explain it in three minutes where it was taking me. You know, ten times that long just to write an answer. Not because my handwriting was bad, but because I just was so concerned that I wouldn’t put the right facts in the right order. But if I could offer them verbally, it changed everything.

One thing that you did ask me that I would love to talk about very quickly was how did it affect my, how has it affected my working, my, my professional career? And, yes. How has spina bifida affected that? Well, it has affected it because I’ve like Just this, I started a new job in September and I missed, I worked from home sort of during that month, but I was very sick with the bladder infection. Bladder infections are very common for people with spina bifida. Any office that I work in has to be accessible with an accessible bathroom. Um, I don’t have quite that luxury yet at my office.

We’re making some accommodations. We have just gotten an amazing grant to help us update our building and make it ADA-compliant, which is pretty incredible. Um, and I’m excited to get to, to be, it’s actually our vice president that’s going to be overseeing everything, but I told him I was going to ride second because I, it’s ADA related and I just can’t keep my toe, my mitts off of it, so.

Does, does ADA require that your workplace have those accommodations for you, or does it depend on the size of the business?

It depends on how many employees. It depends on how many employees. To me, and this is something that when October rolls around, it’s Disability Employment Awareness Month, that can be talked about in more depth, but to me, any employer worth their salt who understands that someone with a disability is just trying to support themselves and is willing to give the very best they can in everything they do will make the accommodations even if it means remote work.

That’s, that’s true because it doesn’t necessarily have to cost them more. If, like as far as restructuring their business.

Right.

Building.

Um, most students are coming out of college these days with everything they need to accommodate their disability.

And they just have to take it to work with them. Um. And when there need to be structural modifications, it’s not hard to find, especially in smaller towns, people that are willing to donate their services and donate the materials as a tax write-off, right?

Well, and a lot of the, you’re saying the college students, a lot of them would have some of the funding from vocational rehabilitation to help them get started, right? If they haven’t been working already. At least that’s my understanding of it. I’m still clarifying some of those things.

Yes. And it can vary from case to case. There, um, one of the policy initiatives that I’m working on is, is changing disability services so that there is a general framework and then specific, the ability to tailor to specific needs.

Because right now, a way, the way that a lot of it is structured is that you just sort You either fall into a criteria or you don’t. And that’s not good.

Um, do you have any advice for, um, Um, for others who have been recently diagnosed with Spina Bifida, um, or parents of young children who have been diagnosed. So some in your case that may, that may have gone unnoticed for a while, or for a parent who has a younger child and they’ve gotten the diagnosis.

For somebody that gets their diagnosis as an adult like I did, learn everything you can about what it is. And all of a sudden your life is going to make sense to you when you start seeing the quirks. Um, One of the best things that happened to me, it’s also one of the most frustrating things in my life, is that I’m on the advisory board, the adult advisory board for the National Spina Bifida Association. And there’s this one woman in the group that she and I just immediately clicked.

And she was like, I was like, she said something. I said, me too. And she said, really? And it turns out that a lot of the symptoms because she has spina bifida occult as well and was not diagnosed until she was an adult. Um, And just, um, she wasn’t as old as I was, but she wasn’t diagnosed until she was an adult.

And she just, I mean, it was so neat. Um, you know, C. S. Lewis, I think, is the one who said we read to know we’re not alone and having a support group lets you know you’re not alone. So join a, as kitschy as it sounds. Even if it’s an online support group, join a support group. Um, yeah. For people who have children diagnosed with spina bifida, get to know other parents of children with spina bifida, and do not take advice from anybody that does not have a child with spina bifida.

Do not listen to them. Do not allow them to invade your mental space with anything Be very kind and even if they’re in your family or your church family or your social circle Be very kind and just say you know I’m really looking for this advice from people who have the same experience. Um, if you don’t mind, I don’t mean to be rude, but I need to ask you to stop giving me this advice because it stresses me out.

Every time that I post on Facebook that I need prayer, um, I have to post the disclaimer of I’m not looking for advice about this particular thing, I’m not looking for If you want to post a verse of scripture to encourage me, that’s great. But just pray for me, pray for Tony as he cares for me. Please do not give me any advice because not everybody’s situation is the same.

And, um, I had a friend in high school who said, Melissa, if you would just walk enough, you would, you would walk straighter. You’re just not concentrating hard enough. And, um, she still says things like that, not to me, but to other people now as a, You know, this was 30 years ago, and she’s still saying things like that to people.

Um, I just simply don’t talk to her anymore. And that sounds mean, but she meant well. She was trying to be encouraging, but to her, because she didn’t understand, it was a matter of my not being able to, I wasn’t doing something right. And if I would just try a little harder, then it would be okay. And, um, I, I also would say to parents and to adults, get the very best medical care that you can get.

Uh, if there’s a doctor, if when you do your research, if there’s a doctor that you want to go see but your insurance doesn’t cover it, call them and ask them if they will allow you to be an out-of-network patient and work out a payment system until you can be reimbursed by your insurance company. Um, if you need something that you don’t know where to find it, um, message me. Um, I’m @DCBelleonWheels on Twitter and Instagram. And I’m @melissa.d.ortiz on Facebook I would, and then my email is mOrtiz@nationalcenter.org. I would welcome the opportunity to find you what you need.

Part of what I’m doing in my role at National Center is we’re building an app that when it goes to full operation, you will be able to type in your zip code, your diagnosis and what your specific need is, anything from catheters to um, an accessible church and everything within 100 miles of your zip code that fits that parameter will pop up. And I’m so excited about this, this, um app.

So, I was going to ask you about a new project. So, when is that predicted to be out?

I’m still building the database for it. So, until I can get, you know, until I can, it’s, and that entails, I am right now going, working my way through all 50 states to see what disability programs are available in each state.

I am working my way, um, and I’m, somebody asked me this, how many people does American, ABLE Americans have on staff. And I’m like, me? And we have a research team but they’re researching some other things. This is the building of the database and I’m, I’ve begged for an intern so hopefully I can find an intern that will come and work basically for free three days a week and do the research for me to pull that database together quicker because I am torn between that in between getting out to meet policymakers who need to know about what we’re doing and how we differ from other disability groups out there. Right.

Well you’ve shared your contact information with us. Um, we’ve heard about this. Listeners, you’re going to be hearing more from Melissa. We’re going to have a couple more episodes at least with her.

And um, so, so make sure that you watch for those coming out in the future. But Melissa, thank you for spending some time with me today to help me understand more about spina bifida. Um, I’ve learned a lot and I know our listeners would have learned as well. Um, but also just sharing some of your stories. And picturing more, more what, what life was like growing up with you. So thank you very much.

Thank you. Thanks for the opportunity.

Tonya Wollum

Tonya

Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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