Maureen Ava Mata on finding power in disability in the Philippines

Angela Santillo
Jan 6 · 23 min read

This is a transcript from episode 48 of the podcast And Then Suddenly.

This episode is part of And Then Suddenly; Rising Voice(s). This special series features conversations with partners from Voice. Based in Africa and Asia, these individuals -often leaders of organizations or small groups- are working tirelessly to ensure that their own voices as well as those they represent are at the table and not on the menu. The moments they share are their very own and the conversations are impromptu and candid.


Maureen Ava Mata
Can I just say one last phrase?

Angela Santillo
Oh, yeah.

Maureen Ava Mata
Just turn all this negativity into an opportunity. And you will really be amazed on what’s in store for those negativities that we encounter in life. And you know, the universe always hears what we really would want to achieve in life, because there is the law of attraction, of course. So, if you would want to throw away good things, okay, it will come back to you. But if you would want to throw away negative things, hopefully it turns those negative things into opportunities and those negative things will not come back to you. Instead, it will be as an opportunity for you to be able to put your foot forward.

Angela Santillo
This is And Then Suddenly, the podcast about the unexpected moments that turn our lives upside down. I’m Angela Santillo. And welcome to the show about big life moments only I don’t know what my guests are going to talk about until we meet. And you just heard from my guest today, Maureen Ava Mata talking about a theme that’s frequent around these parts, which is the idea that…well, the concept of turning negative experiences not only into positive experiences, but rather experiences of change or of action. And this is a particularly timely theme for me. We just celebrated Thanksgiving in the United States. And that’s a holiday where usually, you get together with friends or family and because it’s headed towards the end of the year, I feel like there was a lot of talk, especially this year, about what happened in 2019. And a lot of people I know have had a really difficult year and there’s this question of, “I want to 2020 to be better.” And I think it’s more of a question of, well, how can you take what happened this year and turn it into positive action next year. And that’s definitely something I’m considering with the happened to me this year.

So, this theme is very timely, I would say for me, and this is also the next installment of my special series “And Then Suddenly; Rising Voice(s).” This is I believe, the sixth episode and in this special series I talk with guests from Asia and Africa. They’re often leaders of small organizations and they’re working really hard to make sure that their voice along with those they represent are at the table and not on the menu. And of course, my partner for this special series is Voice and Voice is an integrated grant facility that promotes diversity and inclusion in 10 countries in Asia and Africa. They are on a mission to amplify and connect thus heard- that’s unheard voices. Sorry, kind of…let’s start that again. They are on a mission to amplify and connect unheard voices so that no one is left behind. And of course, they are financed by the Netherlands Ministry of Foreign Affairs and executed by Oxfam November and Hivos.

And this episode is coming out in honor of International Day of Disabled Persons, which is December 3. Now this day was established in 1992 by the United Nations. And its objective is to promote the rights and wellbeing of persons with disabilities and all spheres of society and development. And just some quick facts for you, 7 billion people are alive today in the world, and over 1 billion people in the world have some form of disability. So that’s one in seven, which I didn’t know that number was so high, and more than 1 million of that 1 billion are children. And 80% of all people with disabilities live in a developing country and 50% of disabled persons cannot afford health care. So that’s the landscape of this issue. And you’re going to hear the story from one of the 1 billion disabled people, but her story is pretty incredible. All right, here we go.

Maureen Ava Mata
Okay, so my name is Maureen Ava Mata. I’m 45 years old and I live here in the Philippines. I am a person who has been amputated for last two- around 1993, so about 26 years. I’m a survivor of bone cancer. I’m a woman with disability. And now I’m working right now as a development worker within the sector of persons with disabilities and as of the moment it is where I feel fulfilled. And my commitment is at its highest point of the moment.

Angela Santillo
All right, perfect. Well, then, let’s just get to it. So, what is one moment that changed everything for you?

Maureen Ava Mata
The time when I was diagnosed with bone cancer about 26 years ago, and I stopped schooling when I was around Secondary College. I was 18 years at that time. And yeah, and I had to undergo chemotherapy before about six months. So I had to leave school for about two years but then the ups or the downs for me was I never expected it because I planned my life, as what usually at that age what I would want to be in the future. I want to have a family, you know, finished school, but then it was a blessing in disguise in my heart because it really turned my life upside down. Meaning that the perspective I had before, the values is still the same, but then I was super sensitive before but then it became thick skin, in a good way of course. So being a bone cancer survivor let me experience things that I never thought I would be experiencing up until now. And it broadens my horizon and broaden my experience in meeting other people in different walks of life. Getting opportunities from all, not just from the positive things that I experienced, but of course from the negative things that I’ve experienced in life.

Angela Santillo
Wow. And so, you said that you were 18 when you got your diagnosis?

Maureen Ava Mata
Yeah, yeah, I was 18 at that time.

Angela Santillo
So just because…I’m familiar with…let’s see in my family, we’ve had lung cancer and melanoma, but what kind of symptoms were you having that led them to give that diagnosis of bone cancer?

Maureen Ava Mata
Okay. After I had an accident when I was 15 years old. Okay, so I fell and my bone crashed and they found there’s a tumor already there.

Angela Santillo
Oh wow.

Maureen Ava Mata
Yeah, so I was not yet amputated to that time. My doctor remedied some things wherein I still walk with my two feet, but there are there were limitations already. So then during those times the cancer- actually the tumor that was taken off from my bone, okay, actually was amputated above knee left. So, it was lower extremity. So, it progressed really into bone cancer. And then my appetite became so low, I cannot eat. And then I became thin, as in thin as if I’m not eating really. So those are the symptoms that

my doctor- when he saw me when I had my check up, so he already has this you know, this premonition that I have this cancer. So, there was a biopsy, I underwent a biopsy on my knee. And that’s it. They found out that it was a bone cancer and they needed to have amputated my leg. So, yeah.

Angela Santillo
So, the amputation was after the diagnosis. And then you went through a period of chemo.

Maureen Ava Mata
Yes, yes. So, for about six months, I guess. I was in and out of the hospital for about one week, every month for six months. I underwent also blood transfusion because my hemoglobin really went down. Because the support of my family was there, it really helped me a lot.

Angela Santillo
Yeah. Now, did your amputation follow the diagnosis of bone cancer or did they do that first as they were working on the biopsy?

Maureen Ava Mata
I was amputated after the biopsy.

Angela Santillo
So, you knew you had it and they did that.

Maureen Ava Mata
Yeah.

Angela Santillo
What was that like? Because that seems like such an extreme right away next step. And you were so young, what was that like for you?

Maureen Ava Mata
Honestly, I felt as if the whole world fell on me. My plans, you know, died down during those times. But my family were my support system, actually up until now. So good thing that they are there physically, financially, emotionally. And then I have friends at church. So, our parish priest usually comes to our house every day and you know, counsels me so not to give up on life. But there were times that I would want to. And I asked God why did he do it to me? But it was really a very short time, I learned to accept it. Because the denial thing is what didn’t last long actually. I accepted it but then of course, I’m thinking of what our neighbors will say to my family. You know, what will they say that I had this sickness or illness, this chronic illness? And then what will be the effect with my siblings because I still have the youngest brother. He was four or five years old at the time. I didn’t tell him that I was amputated. Yes, so that’s it.

Angela Santillo
And then in the, you know, because I’ve talked to another amputee on my show before and I’m just curious, at the age that you had it or maybe even with the health care system over there, is there availability for artificial limbs? Did you start going to physical therapy right away? What was the process of healing and readjusting to life afterwards?

Maureen Ava Mata
So, during my six-month chemotherapy, aside from my family who was there of course, I underwent physical therapy because I need to learn first how to use the crutches. Because I was amputated already, so I have to get back on my foot. You know because I don’t want to be like an invalid.

Angela Santillo
Yeah.

Maureen Ava Mata
Yeah. And because of the support system of my family and church, my churchmates and of course, in my village because I was youth leader before, so I never lacked those kinds of support. The motivating one is my family. Of course, I’m the eldest among my siblings. So, my parents expect lots for me, even though I’ve been amputated already. Before the healthcare system came in, my mom and my dad, although we are a middle-class family, when they were OFW for three years in Middle East, and then they came back, so they had savings. So, they bought real estate land like that. But they sold those things just for me to be able to pay for the hospitalization and buy chemotherapeutic drugs because during that time, it’s really expensive actually up until now. And the thing is that my mom asked for support for politicians to give medical assistance and we asked for financial assistance from my relatives, my parents relatives wherein they pitch in. And good thing my three siblings didn’t stop school. You know, I was the only one who stopped schooling that time. But my three siblings did not stop school because it seems that my parents still have that money for my siblings’ education to push through. And to put food in our table, of course.

Angela Santillo
I mean, already I feel like a diagnosis like that really impacts the family. Like everyone’s worried about you, everyone has to rally around you. But it really impacted so much of your family, as far as economically and everything. That had to be, I feel like when we’re 18, we’re a little bit self-centered. and that had to be…because you were noticing the global effect of your diagnosis on the people that you love and that they were really rallying around you. Did that change your perspective very, very quickly? Or did it take some time to understand all the sacrifices that people were making?

Maureen Ava Mata
Actually, ever since I was young, I know my parents sacrifice for us. The priority in our families is for us to finish our education because they said that that is the only thing that they would be able to give to us. Not material things, but for them to be able to assist us in finishing our education. So, since I’m the eldest, I know what the burden is on my shoulders being the eldest, but then that burden I turned that into an opportunity. You know, because I know even though I’m an advocate already, I have to help my parents, I have to study hard. I have to help my siblings, I have to help my family inside the house doing household chores, because even though I was amputated at that time I helped in doing the laundry, cooking, doing the grocery, you know, we all have to do those things. And the thing is that my siblings and my family didn’t treat me as a person with disability. They treat me as if I didn’t have any disability inside the house. So, I still have to continue with all those responsibilities. Same thing with my siblings, you know, and it did not change my perspective with regard to disability. You know, it really took some time.

But once when I get back to school after two years of leave of absence, I felt different. You know, I’m not confident, my self-esteem was really low that time. I’m happy because my new classmates, because my old classmates since I stopped two years they’ve graduated already in college, so my new classmates…I have friends as in, it was as if I was amputated and get back on my foot. And I cannot say feet because I only have one. Yeah, you know, so I had lots of friends actually. And they’ve been very friendly to me. And it seems that I was renewed again. You know, I felt that I was reborn. Before and after I was amputated it’s really kind of different because before I was amputated, before I was diagnosed or before I had that illness, my routine- our routine in my family is just home, school, home, school. Like that.

Angela Santillo
Yeah.

Maureen Ava Mata
Yeah, but during my college so I live in a dormitory. So, I live far away from my family. I live in a boarding house wherein I became independent, as compared before I was not amputated. It seems as I mentioned a while ago, I was reborn. I became independent. I learned how to be independent, not to depend much on my family, but then I learned how to, you know, strengthen my responsibilities not just for myself, but also for my family. And it seems that I have I have a life during that time. You know, I learned how to party, I learned how to go out and have a life. Enjoy my friends. You know?

Angela Santillo
Yeah.

Maureen Ava Mata
Yeah, so it’s really ironic, but I felt happy. But I still have this feeling that what will happen if I’m not amputated? What will happen if I didn’t have that cancer? You know, maybe my life is not the same as what I have right now.

Angela Santillo
Yeah. I feel like when, especially with medical diagnosis, there is a sense…I’ve been through a medical diagnosis that kind of changed everything for me and there is this kind of mourning you do for the life you could have had. And then you have to accept your new life. And there’s a version of you out there somewhere who never got that, and they’re doing other things. But you’re you.

Maureen Ava Mata
You know, that’s true and I learned how to appreciate life. You know, being alive is really a blessing. And because God gave me second life, I really have to spend my life happily, you know, not just being good but being bad also. You know, we have experienced things, but we have to take that as an opportunity for us to mold us into a better person.

Angela Santillo
Yeah, so then what did you end up doing after school? Like, what kind of work did you pursue? What was your life afterwards like?

Maureen Ava Mata
Okay, after… well at school, they gave me reasonable accommodation. But then I still have to climb the six floors. There’s no lift, no elevator. So, and then to another building for my laboratory because I graduated biology in my undergrad. And then I’m supposed to go to Master of Science, but then I decided to study medicine. So, I finished the degree of medicine and then actually after I finished medicine, would you believe I worked assisting my classmates in the medical field as an assistant position. Put I applied for a BPO company, you know the business process outsourcing.

So, for eight years I became a call center agent to develop my- actually it really developed my personality, my English proficiency. You know how I speak English, how to pronounce the works, and I developed things for in I learned how to talk like this, you know, in a way in the told me that I speak swimmingly, not like a real announcer or something.

Angela Santillo
Yeah, I can see that.

Maureen Ava Mata
Yes, and I learned lots of things. And again, I guess all the employees in that BPO company learned a lot from me also because they became aware of a person with disability like me. So that is really very important and how we would want to create empathy in the community. We don’t want them or for us to ask or to have this entitlement. You know that we should give me special attention like this. But what I would want to share with them is me, myself, and how they would be able to interact with me as me, as Maureen. You know, that’s one way of creating awareness and it’s more of the action than the words being said to them.

Angela Santillo
Yeah, you mentioned earlier when you were talking about you were a little concerned about what the neighbors would think of your situation. I’m wondering, how’re disabled people treated in the Philippines or where you are? Is there a stigma around that? Or are people pretty accepting around disabilities?

Maureen Ava Mata
Where I live at right now…a decade ago, of course, it’s different. Because although we are a middle-class family, our neighbors look up to my parents because my mom was a teacher, my dad’s working as a security guard, but still, they enrolled us in exclusive schools. You know, so they looked up to us. When I got disabled, it’s as if the way that they been looking at my family, you know, at first my parents doesn’t want my neighbors to know that I was like this. You know, maybe because my parents wouldn’t want pity on me from my neighbors or the judgment wherein my parents are frustrated, you know, those are the negative behavior. So, the negative impacts or words that may parents have been hearing. But then it seems that when they learned that I experienced this kind of chronic illness, that I need to be amputated, it became an eye opener for my neighbors wherein it also create awareness on their end that disability happens to everyone.

And pity should not be- what I mean is that with pity is there. A person you know, say that they do like that, but they cannot help you one way or another it’s not good. But they help or they find ways wherein you could be accommodated in a way we’re able to participate in that community. That’s what happened in my community. Because a few years after that, and after I graduated from med school, one counselor in our village went to my house and asked me parents if I could be one of their leaders in organizing an organization for persons with disabilities.

Angela Santillo
Oh, wow.

Maureen Ava Mata
Yeah. Because I became a symbol of a good leader on their end, because in spite or despite of what happened to me, my family still has this positive attitude in life. The same as what happened to me. I say, I have this positive attitude in my life. And I became more busy more, what they call that…my role as a citizen in that community leveled up because they accepted that being a leader for persons with disabilities really motivated the parents in our area wherein they also have their children with disabilities. And they’ve been asking my parents on what they need to do for them, you know, their children with disabilities to be able to access, be assisted, or to access the basic services in our community, in our government. So, you know, my parents assisted them one way or another. That’s in my area because I live in central business district. But based on my experiences in going to different parts of the country here in the Philippines, because I live in an urban setting, so when I went to a rural setting, it’s certainly different. You know.

Angela Santillo
There’s more, what do I want to say…not as much community support perhaps? Or what makes it different?

Maureen Ava Mata
There’s definitely in an urban setting, but I’m not saying that all in our urban communities here in the Philippines have this support services, because I’m an empowered person with disability. So, I know how to engage with our local government unit already. They heard my voice, you know. It’s really a very big influence in my part, when you have the name, they know because I was empowered. I was being mentored by different leaders here in the Philippines. I learned how to assert for my rights already. But even though I live in an urban setting, there are still people in metro Manila or in the national capital region we’re in. For example, I ride a taxi. The taxi driver, the cab driver will ask you, “Oh, where is your assistant? You should not be going out of the house.”

Angela Santillo
Oh really.

Maureen Ava Mata
Yeah. “So, you’re not married? Why?” Or, “That’s right. It’s okay. You should not get married.” You know, things like. Or, if you’re married and if you’re pregnant, and then you’re about to give birth to the hospital, the doctor will tell you, “You’re already a disabled person. Why? Why did you allow yourself to be pregnant? You should not be pregnant.” Because you’re not entitled to. So, there are still barriers that we still encounter because here in the Philippines, number one barrier is accessibility. Not just for infrastructure or the environment, but of course, the attitudes of people around us. Because even though I’m an empowered leader already in our area, I still experienced bullying and discrimination up until now.

Angela Santillo
Yeah. I mean, I can’t imagine. Sorry, the thing that got me was the idea that like, you know, you’re disabled. So how could you decide to have a child, like your life must be not appropriate for that. That’s crazy. I mean, it’s not crazy. Well, it is was inappropriate. Yes.

Maureen Ava Mata
Yes. And it’s really off on my part that you should not be going out of the house because you don’t have any assistance. Even in riding a jitney because, you know, we have a jitney here or when we commute there are public utility vehicles. Because if I don’t have the money for transportation, for example I do not ride grab or a cab or a taxi. I ride jitney where in the fare is only around nine pesos as compared to when you ride a taxi it’s about 300 pesos. You know the difference? In terms of attitude for example, going to school, I have members in my community wherein they are in a regular schooling, but then they experienced bullying and the teachers always they’ll tell the parents of the child with disability that she needs to enroll her child to sped school instead of a regular schooling. But she only is a triple amputee, so she doesn’t have any learning disability. Why should that child enroll in sped school?

Angela Santillo
Yeah, yeah. Hearing these kinds of things and also experiencing some discrimination yourself, has that motivated you? Or has that made things harder for you? Like how do you feel when you hear this stuff? And how has that impacted you?

Maureen Ava Mata
Yeah, I prove them wrong every day, you know?

Angela Santillo
That’s what it sounds like.

Maureen Ava Mata
Yeah, I guess people tend to look at you. They don’t say words you know, their eyes, they use their eyes. Wherein I’m an amputee so I use a pair of crutches, they look at you from your foot going up. Well, I prove them wrong. You know why? I dress properly. You know, I learned how to dress properly. I learned how to make myself presentable. And I learned to be confident. I read, I study so that even when they ask me something or even, they look at me, I know how to challenge them even with my eyes. Wherein they will be the one who should be shameful of what they’re doing.

Angela Santillo
Yeah, yeah, yeah. And do people look away? Like, do you see that they’ve changed as they are witnessing somebody who-because you called yourself before empowered with your disability. And that’s probably something that’s…I mean, that’s a pretty strong stance, whereas you could feel like you just want to avoid people. How do people react when you are this empowered, disabled person and you want them to look at you? Do you notice a difference?

Maureen Ava Mata
Yes. Because they stare at me. You know, as in they stare at me and they stare at my amputee, at my stump. And they look at my crutches, but I stare at them also until they look the way. So, I change my perspective in life when I started to be like this. What happened was, my classmates in med school or even in undergrad, every time after our major examinations we plan on going out. Whether we eat at the restaurants or go to- we have our nightlife, Friday life. You know, we go to bars like that. So, they asked me to join them and my classmates don’t have any disability. So, it seems that okay, I felt that time that they’ve already embraced who I am. During those times, I started joining them and letting other people see I am with them always. You know what, every time those people stare at me, all my classmates and friends were the one who gets mad at them. They speak to those people, “What are you staring at?”

Angela Santillo
Yeah, yeah. Well, cause they got they have your back, you know, they’re there to support you because they know that-

Maureen Ava Mata
Yes, yes.

Angela Santillo
Well in some ways the way you behave indicates to them how you should be treated. You know, you’re somebody who’s wanting respect and not you hiding and therefore people shouldn’t treat you badly. Wow. So, did you say earlier that now you’re working- did you say you’re, not a social worker but a rights advocate?

Maureen Ava Mata
Yes, yes, yes. I am working right now with an NGO promoting the rights of persons with disabilities. It’s the Leonard Cheshire Disability Philippines Foundation and we’re one of the Voice grantees. Wherein we empowered or our goal here is to strengthen disabled people’s organization and of course, create a disability network in promoting employment for persons with disabilities. But I’m not just for advocating for employment, of course, but I’m advocating for the disability sector in gaining their human rights and being a rights holder. Our sisters and brothers with disabilities, they need to be aware of what their rights are, but still we need to instill good values in them, if they will be advocating or claiming for their rights.

Angela Santillo
I have a couple of questions. This might be a weird question, but you experienced disability at 18. And I’m curious because you haven’t been doing rights work since you were 18. You went to work at the BPO, and you did other things. But have you noticed- has there been a difference in the way disabled people are treated since you were 18 to now? Have you noticed any change?

Maureen Ava Mata
Yeah, definitely. Okay. When I went back to school, I had extra extracurricular activities, wherein I go to communities of different vulnerabilities wherein we do community work. So, I’m involved already at that young age, even though I’m an amputee. So, in the community wherein we give health education, we provide things in preventing illnesses or disabilities. Even though I work as a BPO or a call center agent, I also work as a physician during that time and I volunteer as one of the physicians here in the Philippines. So, we went to rural areas wherein we experience meeting persons with disabilities. I saw there that still a charity. During those times persons with disabilities were seen not as the rights holder but as shares of services. Okay. And government assumed always that these are what persons with disabilities need. We make the plans, they are the ones who people asked what are the needs, or what are the services or the things that we need.

But a decade after or two decades after that, from way back, I started as an 18-year-old amputee and then 45-year-old, still an amputee of course, there’s been changes already. Because all the previous leaders with disabilities have already set up the ground or set up things for us in terms of policies, in terms of governance wherein we should be included, our voices should be heard. And then when I was mentored to become one of them, that’s where I saw this opportunity for me to be able to continue in what they’ve been doing. So good thing in 100% awareness here in the Philippines, I guess has reached around 50% yet, guess around 23%. Even persons with disability themselves are not that aware about disability or within the community that person with disability is interacting with. Okay, at the same time the government before it’s not that aware about even the policies that had been rectified, or that had been passed already. But now, they’re open. When they learned that there are policies or legislations about disabilities, so they are open in implementing those rights. And now they’re open, including persons with disabilities in special bodies are in consultations in hearing our voices. And even in planning and in budgeting, and even in monetary. So, I cannot see little changes but lots of changes already. But still, we have a long way to go.

Angela Santillo
Yeah.

Maureen Ava Mata
Advocating really should be continued. Not just for us, but it should be a two-prong approach wherein we need to also make the government aware about us. So, our voices should be heard and be included in the plans and even in budgeting and in monitoring.

Angela Santillo
Yeah. Well, perfect. Well, is there anything you wanted to add or anything you would like to say that you haven’t been able to share yet?

Maureen Ava Mata
Well, problems are there. You know, we experienced trials, there are issues and concerns, specifically for our sector, but we are not just the people in the community. Okay, we need to be aware of ourselves as persons with disabilities, but we also need to know or be aware of other people also because they are part of the community and for us to have a good relationship or for us to be included in the community. We need to have this interaction even though there are barriers. We should not let these barriers prevent us from interacting efficiently and effectively and actively with other people. But we need to make a way for us to be able to make those barriers disappear. Okay?

But the important thing is that those things, those negative change or those negative attitudes or negative things that we experience, we need to address. You know, we should not be afraid of letting our voices be heard. We should not be afraid of putting our foot forward. If we think that what we’re doing is right, true, and of course, according to our good values, we must push through. Because at the end of the day, we will be able to reach our goal and to have a better community wherein inclusion is there. And for us to be a part wherein we can live, I cannot say happily forever and ever, but wherein we will not feel discriminated, we will not feel any bullying. But you know, the feeling of empathy, the feeling of teamwork, cooperation, good balance is there.

Angela Santillo
Now Maureen is affiliated with Leonard Cheshire Disability Philippines Foundation, and you can find them on Facebook at LCDPFI. And you can visit voice at voice.global or you can find them on Facebook, Instagram, and Twitter. And you can follow me And Then Suddenly podcast on Instagram, Facebook or at my website andthensuddenlypodcast.com All right, thank you so much for listening. Have a good one.

Angela Santillo

Written by

Writer | Corporate Storyteller | Host of the And Then Suddenly podcast

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