By way of introduction, we thought we would share the following from Azucena’s biography on her website, www.azucenagarcia.com :
My name is Azucena Garcia. I live in San Diego, CA, where I was born and raised, and walking is not my native language. Even the slightest crack, curve, or uneven surface brings my 5’4 stature tumbling down to the ground like a Jenga tower. The cause of my abnormal gait and reduced fine motor skills is not overtly evident to the outside world, which often assumes I was in a car accident. “No, that’s not it; I was not in a car accident; I have Cerebral Palsy,” I tell people when they come up to me.
At the tender age of two, I was diagnosed with Spastic Diplegia due to Cerebral Palsy, which means I have had muscle spasms – spasticity – on both of my legs almost daily since I can remember. Spasms and chronic leg pain have been my constant companions all these years.
Thirty-five years and 18 orthopedic surgeries later, here I am, against all the odds. Despite all the challenges along the way, I have lived a life full of adventures! After graduating from the University of California, San Diego (UCSD) with a degree in Communications, I moved to Spain (Vigo) to work as a teaching assistant, traveled to 17 different countries (so far), worked as a production coordinator in TV and film for eight years, participated in a reality show to be the next ESPN Reporter for the 2010 World Cup just to name a few things. And yes! I love sports, especially soccer, tennis, F1 and boxing!
Following is their interview:
Dave: Azucena, thank you so much for sharing of your time and talent today!
March, as you know, is a developmental Disabilities Awareness Month. And here at CPCIDD, we see it as an opportunity for many people to learn some for the first time, what a developmental disability is. And I found a definition online that I want to share with you and then get your thoughts on:
“IDDs are differences that are usually present at birth and that uniquely affect the trajectory of the individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems.
Intellectual disability starts any time before a child turns 18 and is characterized by differences with both:
- Intellectual functioning or intelligence, which include the ability to learn, reason, problem solve, and other skills; and
- Adaptive behavior, which includes everyday social and life skills.
The term “developmental disabilities” is a broader category of often lifelong challenges that can be intellectual, physical, or both.
“IDD” is the term often used to describe situations in which intellectual disability and other disabilities are present.
Some diagnoses would include autism spectrum disorder, cerebral palsy, down syndrome, Fragile X, Prader-Willie Syndrome and others.”
So what are your thoughts on that definition?
Azucena: It’s a Webster’s dictionary definition. It’s a very, even if you will, clinical definition. OK – having a developmental disability is that, but it kind of reminds me of sort of the medical model that exists where doctors see you as a diagnosis rather than a person. And not that that is bad, but there’s much more. We are, as people with developmental disabilities, we are much more than our diagnosis. We’re not necessarily people that need to be fixed, which I do think that doctors often see us as that as a medical diagnosis. And so this definition very much falls into that way of thinking. I think there should be a combination between a medical definition and a social definition.
The societal model as opposed to the medical model that doctors see, is that society creates the barriers – such as when you don’t have a ramp, when you don’t have an elevator. That’s a barrier as opposed to you’re not capable of doing something. For example you’re not capable of processing information in a “standardized” way, if you will, because of your cerebral palsy.
Dave: I really appreciate you clarifying that. How would you add to that definition to give it greater richness?
Azucena: I would combine them both. I mean, I agree it’s important that we have a medical definition of what cerebral palsy is or down syndrome is because sometimes I am defined by the pain that I feel in my body and I have to take medicine to deal with my legs. But many times I feel that people’s attitudes, people’s looks, people’s perceptions of how I should look are what create the disability. So I just think that there should be more, that they should be combined, right?
Dave: Can I say that there’s one sentence that you said that hits me on a very deeply personal level and that’s when you said “we don’t need to be fixed.” My nephew Kody is on the autism spectrum, 28 years old, reasonably high functioning, but he still has significant challenges. But most of the challenges that he has, as you mentioned, are those imposed on him by society. And it literally at times boils my blood when I hear people talk about cures for autism. My nephew doesn’t need to be cured. He’s one of the most amazing human beings I know. I don’t want him cured from that. So anyway, that’s just a personal side note.
Dave: Thanks for letting me share my own personal experience with that question. Next question – Why is it important to raise awareness about developmental disabilities? Why is it important that as many people as we can get to understand this topic as possible is important. Why is that an important thing?
Azucena: I think raising awareness is the first step and then taking action as the next step. But to answer your question, why is it important? Because having a disability, it is the only sort of part of our society that anyone can fall into at any time, at any moment. So if we have a greater understanding of the human experience and the human experiences encompasses all sorts of people, every single person, and we understand that we all process information in a different way and that we have different types of intelligences, that we experience life in a different way, then we can create a more empathetic world because that is more of what we need in this world. More empathy. I think ultimately we end up rejecting that which we don’t know anything about. Like “Oh, that’s the other, that’s them.” So there’s always a division and it’s not us versus them.
It’s all of us. And by raising awareness about developmental disabilities, about mental disabilities, about all sorts of experiences that encompass the human experience, then we can create greater empathy. We can break down barriers, we can further educate our society so that if a loved one or if a partner or if a friend has or is diagnosed with a developmental disability, then we feel like, okay, I sort of know what this is. Coming back to my personal experience, when my mom received my diagnosis that I had cerebral palsy, she didn’t know anything about it. She thought it was the worst thing ever that I wouldn’t be able to go to school, that I wouldn’t be able to contribute to society, that because the name Cerebral palsy and even in Spanish “Parálisis Cerebral” is so terrifying. She just thought the worst. The worst. So education, education and listening, even having this interview right now between you and I and that the fact that you are going to share it, our voices, my voice is one of the many voices that need to be heard. Today is National Cerebral Palsy Awareness Day March 25th. And my voice is one of the 17 million voices that also have cerebral palsy. So if we can raise awareness, raise our voices, then we can create a more accessible and inclusive society.
Dave: What are some misunderstandings or misconceptions that people might have about developmental disabilities? And do you have any specific examples from your own life?
Azucena: Yeah, I mean, well, we already mentioned some of them that for some reason, society sees us as something to be fixed. And then also there’s, there’s the economical model of it also, right?
There’s the economical model of things where people with disabilities are seen as a burden in society because they’re not able to contribute or so they think that we are not able to contribute. And in such a capitalistic society in which we live in, it’s very important that you produce. If you are able to produce, then you have value in our society, then your life matters. If you don’t, then well, then you are put into, for example, IHSS and the people who take care of you, IHSS providers, guess what? They make $10, $12 an hour. And why is that? Because one, their lives and the work that they do is not valued because they take care of us who are not seen as valued because we cannot contribute or so they think in the same way than an able-bodied person can. Right. That’s one. And then is I see that in my own experience when I share that I have a disability, a lot of people have pity, a lot of people have pity for us. “Oh my God, I’m going to pray for you. It must be so hard.” Well, guess what? Thank you for your prayers, but I don’t need them.
Azucena: There’s a lot of misconceptions. And going back to my personal experience, as I mentioned, my mom just didn’t know what it was. And whenever I tell people that I have cerebral palsy, one, people don’t believe me because they say, oh, but you look so normal. Two, they say, isn’t that Down Syndrome? And it was like, I’m always thinking, oh my goodness this is not okay. And to a certain extent I understand it because it is not until we are faced with the need to know something that then we think, oh, okay, now I need to learn what this is. And now I need to understand what this disability is.
I don’t know what breast cancer feels like. I don’t know a lot of things or even Asperberger’s, I don’t know how to pronounce it correctly. I’ve familiarized myself enough, but I don’t have anyone that I can talk to about it. What is the lived experience of someone with that condition? So it is not until we are faced with the need to learn about something that we then think, okay, now I need to know. And that’s the grand majority of society. So I do not blame them. But that’s where the raising awareness and the education and telling people, okay, these are the challenges that we people with disabilities face. And then that hopefully can translate into breaking down the barriers that we have, making spaces more accessible, making educational systems more accessible. And that’s exactly why we are in where we are because we want to change policy. So yeah, I mean there’s so many misconceptions, but I just
Dave: Wow, that was a great answer – thoughtful and thought provoking! Your comments kind of lead into my next question. What are some ways that people can be good allies and advocates for those who may have a developmental disability, even if they don’t have a family member. But let’s say that they read this interview and they want to learn more, they want to do more, they want to be a better friend or better ally or an advocate. What are some ways that people can be good allies and advocates for those that have developmental disabilities?
Azucena: I would say if you ever encounter someone with a disability, with any disability, just treat us as people. I often see a lot of individuals talking to people with disabilities in a very childlike manner, which I think is very disrespectful. So approach us, approach them and talk to them like a normal person would. And if you don’t know what term to use or what to say, ask them their name. Any other person, you cross the street. What’s your name? Or if you feel like you need to help someone, always ask them, do you need my help? Would you like my help? I would like to know more about your condition. I would like to know more about you. How is life in your perspective? Regular questions. Also read books. There’s a lot of wonderful books. There’s one called Demystifying Disability by Emily Ladau, and her book is actually about exactly that. Her book is about how to be an ally, how to talk to people with disabilities, often a taboo.
People think “How do I interact?” Okay, I understand that. But we’re human beings just like anyone else. And her book, Demystifying Disability is a great book to become a better ally. And then Disabled Visibility by Alice Wong is another great book about our stories. But yes – read books. If you encounter people that you think may have a challenge – for example me – I walk like a penguin, I have uneven hips and walk differently, and there’s people that approach me and say, so what happened to you? And that’s interesting to me, right? It’s all right. I think ultimately just treat us with respect and dignity, and that is it.
Dave: Excellent advice! I’m going to wrap it up with this question. When you’re thinking about today and what we’re recognizing, celebrating today, when you’re thinking about Developmental Disability Awareness Month and National Cerebral Palsy Awareness Day , is there anything else that you want the public to know or you want included in this interview as part of our celebration of the day? You’ve given us a ton of good stuff already, but I want to just give you an opportunity to layer anything on top of that that you’d like to.
Azucena: I think so. I do think that a lot of the concepts that I covered were very deep and we covered a lot, I mean, as far as anything else – we deserve to be recognized not only a month, a year, but every single day.
And that starts by being aware of our surroundings, being aware of other people that might look different from us, and breaking down those barriers. Because ultimately, it’s not about breaking the barriers for me, because I have cerebral palsy or because I fall down all the time, it’s going to benefit all of us. It will benefit all of society, all of humanity. It’s not about just, oh, let’s help this group so that they have a better life. No, it’s all of us because like I mentioned, disability can hit us at any moment, at any time. And if anything else, we all age. And with that comes a lot of challenges.
Dave: Azucena, I am thrilled. First of all, thank you so much for your time and your responses today. I am incredibly appreciative of the fact that you’ve joined our board and are a vital part of our organization, and your contribution today in helping us shine a light on these important questions is so timely and so important.
Azucena: It’s been a pleasure. Thank you so much for taking the time to do this.
