Nidhi Mariam Jacob: Unveiling Art, Identity, and Love | Ep 175

In today's episode we have , Nidhi Mariam Jacob
An independent artist and muralist from Bangalore, India. From her enchanting "Fantasy Garden" series to the thought-provoking "Breathing Canvas" campaign, Nidhi's art celebrates nature, memories, and the human experience. Dive into her creative process, LGBTQ themes, and the evolving representation of love in media and society. Join us for an inspiring journey through art, identity, and love.




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Transcript

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My daughter, Hope Teresa David, she was born with this condition called spina bifidit, and result of that is they'll be physically challenged and sometimes mentally, too. Doctor told us when she was born, doctor told us that she will not survive more than 48 hours God had planned for her. She survived. She survived very bravely. So do you feel that you suffer from inclusion in schools and in public places? People will stare at you as if you are some different alien coming from some different planet. And that stare, my child hope, has now, she's so used to of that stare that she gives it back. We have been running pillar to post. We have changed cities, we have changed country once, and it is same everywhere. 70% to 80% of children with disability are not able to go to school. Because school is not at all there for you. He knew that we'll be the one who will be able to get through all this. So not losing the hope is the key. So do you think there's enough awareness about spinal bifida? No. My answer would be clear. No, there isn't. Hi. Welcome to the Mohawa show. My name is Mohawa Chinapa, and I am an author, entrepreneur, and ex housewife. This podcast is about everything from business to technology to arts to lifestyle. But done and spoken Iman Darise. In today's episode, we have with us Shilpi David, a mother of a remarkable young girl named Hope Theresa David, despite being born with spina bifida, has not let her condition define her. At the age of 13, she's already a beacon of strength and determination, facing life with courage and resilience. Welcome, Shilpi in today's episode, and let's talk about hope Theresa David. So, Shilpi today will share with me a little bit about spina bifida, because a lot of my listeners may not know what exactly is spina bifida. So, to start with, I'm a very, very proud mother. And my daughter, hope Teresa David, she was born with this condition called spina bifida. It's a lengthy name, but I've cut it short to spina bifida. Otherwise, it is spina bifida. Myelomeningo seal with mild hydro. So it's a long medical name. When the child is in the womb, their spinal cord is not developed. So they are basically born with neural tube defect. That's what we call it. And result of that is they'll be physically challenged and sometimes mentally, too, in our case, when I was expecting her, our doctors. So we belong to Dehradun so our doctors back in Deradun, they were unable to diagnose it. So in the month of fourth month of ultrasound, it is there in the picture, but the radiologist missed it, and she did not write it in the summary. Hence, even the doctor, the gynecologist, also missed it. But then it was a blessing in disguise for us. And in the 8th month, when it actually got diagnosed, then my doctor's gynecologist in Dehradun, three of them, told us to terminate the pregnancy. That time, as a young couple, we had no idea what termination of pregnancy means, and we kept going with what doctors kept telling us. So doctor told us at the 8th month that we'll induce artificial labor and we'll let the baby come out, and then we'll see how to go about it. Even the doctors didn't know that what they were doing. Now, when I have little bit of knowledge, what I understand is that even doctors were not following the protocols. So at the 8th month, you don't induce labor pain, you don't let the baby come out at the 8th month. But then, like I said, it was a blessing in disguise for us. Hope was born when I was just eight months. I had just started my 8th month, so she came out when I was eight months pregnant. And doctor told us when she was born, doctor told us that she will not survive more than 48 hours. So we came back home with that. Thought that we'll soon be losing her. But that is not what God has, God had planned for her. She survived. She survived very bravely. And here she is now, 13 years old. She's the reason for our life. She's who we are living for. We made all those doctors realize that their diagnosis was wrong. Whatever they told us was wrong. And yeah, so that's how is a birth story. And that's why, because the doctors told us that she will not survive. So in Christianity, when the person is born and before the person dies, you. Have to baptize the person. Next day, morning. She was born on born 27th January, in the evening, next day, morning, our parish priest, father, we had to call father because that was the day when we were supposed to take her home. So she was in the incubator, and. We called the father from the church to baptize her, because we had no. Idea if she'll be able to survive. Even when we were reaching home. So father came and baptized her. And when they baptized the baby, they ask name what they baptize the child with the name. And of course, we were making list of names and everything, but that everything was so sudden that we had no idea what name we are supposed to give her. And then my husband, he came down running in the room and he's like, what name? What name? And I was like, just say hope, because we had nothing but just hope that she will get through all this. So that's how her name is Hope. So this is her birth story. So, Shilpi, it's fantastic. I can hear so much of resilience, actually in your voice and between the two of you as a couple because it definitely is not easy. Nobody prepares us as to how to deal with any sort of a challenge when it comes to children, because if you've not dealt with it, it gets very difficult. Did it affect your relationship with your husband? I'm among those very few lucky ones who've got the support of the husband like a rock. He's there with us. Sometimes I will fail, but he will be there standing. Sometimes he will fail there supporting him. So we both work as a team. There is nothing that we don't talk about or we have something to hide from. I mean, it's a rock solid relationship, though. He doesn't stay with us most of the time of the year. He's a sailor. Even now he's sailing, but even though. He'S miles apart, but he's there with us emotionally, mentally, in all the ways possible. So, Shilpi, you obviously are managing everything on your own. So you can tell me a little bit about why did it inspire you to start doing this? Advocacy for inclusion is what I was told. So do you feel that you suffer from inclusion in schools and in public places? Do you think India still needs to look into people with special needs? Ma'am. I become very sad to say that India is lacking way behind, though. I know, like, there are a lot of people working towards inclusivity and accessibility. But still, when you come down to zero level, we are still way behind. So there was a time in between, less than a year, when we thought that it would be better for us if we move out of India just because of our daughter. So we moved to Dubai for a very short period of time. But the experience of those eight, nine months, what I experienced there, I still cherish. There used to be a time when we are that time. I used to carry her in a stroller that time. We did not have had wheelchair because she was young that time. Even if people outside India, and I'm. Talking about Indians in, so they become some amazing human being when they are out of even, you know, when I was trying to get on the bus, everybody would come down and help me. I'm in the metro. The whole dabba of that metro will give me place to sit just because I was traveling alone with the baby. But in India, so first, when we. Talk about in general in public, first thing, people will stare at you as if you are some different alien coming from some different planet. And that stare my child hope has now, she's so used to of that stare that she gives it back now, which that has happened only because we've told her not to feel bad. Of course, when this all started, when she started realizing that people are staring, she of course was feeling sad and bad about it. And she used to cry. She used to of course start crying. But then after giving a lot of counseling sessions, now she's become so strong that she starts staring back at those eyes. And now I have to control her. Don't do that. But I'm sure everybody is not that confident. And especially if you're a disabled person, you are so conscious of your body, you're so self conscious that you will probably at one point of time you. Will stop moving out of the house. That will be the end of it. And I personally know people who do not go out. Especially I'm talking about young adults, I personally know them, they don't go out. And there are many reasons for that. First, accessibility. We are still very far away from accessibility. Then of course, the kind of treatment you are given, there is nobody willing to help. People are not courteous enough, which is. What we have been experiencing from such a long time. Not at all courteous enough. Whenever we are going out, even for holidays, when we have wheelchair, we see. That there is a queue and you. Are trying to get in the queue. People will make sure they will put you at the first place. They have been feeded like that. And it is the right of a. Person with disability to be there at the first place in the queue here. Even after telling people that we are on a wheelchair, let us go first. Places like airports, banks, but I don't think so. People are sensitive enough to understand that what it takes for a disabled person to start from the house, only to get out of the house and to reach the final destination, how much it takes for a disabled person to reach there and then after reaching there and then standing in the queue will just break you down. Then. My very important why I'm here today. Is about school, talking about inclusivity in school. So school is the first place for. A child, where they learn, where they get education. But unfortunately, ma'am, it is so bad. It's been now almost nine years that. We have been running pillar to post. We have changed cities, we have changed country once and it is same everywhere. I will not say that it is easier outside India. It's same outside also in Dubai when we went. So for us, whenever we change city or country, our first concern is school. So once we are done with the. Decision of school, then only we'll see. Where we live because we have to be very close to the school. So we'll always rent an apartment very close to the school. So in Dubai, ma'am, you won't believe. We went to 25 schools out of. 24 schools denied admission on the basis of accessibility. And that 25th school was the school who said, okay, come. If that school would have also told us that they would reject the admission. On the basis of accessibility, we would have returned back to India within 15. Days, that point of time. But we got the admission in the last school and we carried on. And then after living there for some time, it wasn't working out, school and medical and everything. So we had to return. So what I'm telling is that it's not just India that what we face, it is same everywhere. So here in India, it is so. Frustrating and it is so bad. And the result of which half, more than, in fact 70% to 80% of children with disability are not able to go to school because school is not. At all there for you. They just make you go round and round in between those administrative process. And by the time they listen to us and by the time they try to accept that, what challenges we have, they will make sure that they will come up with something that will ourselves pull us back. So it's not just happened once. It has happened so many times with us now. So we belong to Dehradun. So we were in Dehradun because Dehradun, being a smaller city, is not accessible and none of the school, you will not believe there is not even one school in Dehradun which is accessible. And that is why we had to come out of Dehradun. So from the last four years we were living in Gurgaon and last year only we shifted to Bangalore. Gurgaon was okay for us because there's a reason. Because there was this whole COVID thing that time, of course, children were not going to school. And also that's why we did not face lot of problem in Gurgaon. But I'm sure Gurgaon won't be less than what we have faced. Now we are in Bangalore. So what these schools are doing is they will give you admission because they cannot say no on the basis of accessibility or on the grounds of disability. So they will give you admission but they will make sure that they will. Create such circumstances for you that you will just give up and you will. Just quit and leave the school and. Then you will be forced to take homeschooling. And this is where I am right now. So here in Bangalore, the school where my daughter goes to, it's a small setup and we purposely look for a. Smaller setup so that our child gets. That attention and the child is not pressurized or the child is not lost in a bigger crowd. Even in that small setup. In the last seven months, the school. Harassed us so much that we are. Just on the urge of taking homeschooling now. Problem is that it's not just me. There is this whole community of disability who's going through. So I have personally spoken to many parents all across India. Everybody is on the same. Know. Nobody, have that peace of mind from the. School side. So this is how it has been always for us. So, Shilpi, I mean, it brings me to also a great part about hope being involved in wheelchair racing and also tennis. And I'm sure sports has played a role in her life and what are the kind of challenges she faced. And I'm sure you were a pivotal person because having with your husband, traveling all around, you must be the person who is encouraging her, asking her to go. How does she feel about the fact that she's taking part in sports? Honestly, up until now, for us, sports has been the most important factor of our lives. It's been now four years that she's been training and that is one thing that has made her such a different person. And we can see that zeal in her. We see that every day. Morning she will. First thing she will ask me is. I have my training today, right? And we are going because there are days when I want her to stay home and relax and study. So first thing in the morning she'll ask me is, today I'm going for my training. No matter what the weather is, no matter how tired she is, you will. Not believe yesterday she started a training at three and she ended at eight. So imagine she can go for these many hours straight. So sports has changed our lives completely. Sport was the only thing which actually made us shift to Bangalore because we were in good gown, so everything was fine. But the training, we thought that we are lacking with the training. So Bangalore was a better option. So that's how we shifted to Bangalore. So she's training for her wheelchair racing and wheelchair tennis here in Bangalore. How fantastic is that, Shilpi? So Shilpi, you know what I would ask you to tell some of our listeners what are the steps you think that society in general can take towards mothers like you, children who are with special needs when they feel so left out. Like you said, that schools also don't accommodate and you had to move city to city, which isn't easy. It's extremely difficult. You move back baggage hoping that you have an easier life. What is it that you wish to. Say through this podcast? Actually, honestly, there is so much to say, but I know we are on a restricted time limit, but in that short span of time, I just want. To say that disability is beautiful. And all these children with disability, they are born with special ability. It is very beautiful. You see, it's dis and ability. If you just remove this dis, it's. Ability, all the children all across the globe, they are born with special ability. My daughter has been training for indian classical music from last seven years and she's a beautiful singer as well. I'm just telling this because I'm sure. That there are these children out there. They for sure have some or the other beautiful trait that they are born with. It is just as parents who have to just channelize their journey, that's it. And they know their way out. We are just mediators. It is between God and them. It is between them and universe. We are just the mediators. So I just want to tell all. The parents, don't get lost. What I have seen personally is parents. Of disabled children, they just get lost in that trauma which they take years. To accept that they have a child with disability. I would just say leave that God. Has given us this precious gift. We just have to channelize the way out. That's all we have to do. So I want my fellow mothers to not lose hope. We are those special mothers who've been chosen by God. And he knew when he was choosing us, he knew that we'll be the one who will be able to get through all this. So not losing the hope is the key. So Shilpi, do you think for a disease like spina be feta? Have I got the name right? So is there enough awareness? Because we're still trying to figure out, like you said, that we still don't even have accessibility. We don't even have ramps everywhere that you go into. In fact, I was just so horrified today. And I was reading this about an old man who had traveled for hours from New York and there was no wheelchair in the Bombay airport, and he passed away by the time he reached the immigration part because he gave the wheelchair to his wife and he walked that 1.5 kilometer in the airport and he died with a cardiac arrest. So we are also talking about travel that can get restricted. We can talking about, of course, schools, which is the most important part for any child growing up, and opportunities that can be restricted. Right, Shilpi? So do you think that the awareness is not really there? And many, maybe parents can take decisions in the early months whether they want to go ahead with that pregnancy or not, because it is not just about motherhood that we put out a very exalted position. It's also about another individual who has to go through all of this. So do you think there's enough awareness about spina bifida? No. My answer would be clear. No, there isn't. I know of a girl who lives in Mumbai. Now she's in her late twenty s and till the age of, I guess, 2021, she did not even know what is the name of her condition? She just knew that she cannot walk, she's on wheelchair. But why? She was not even aware. Imagine for 2021 years. So even now, we do not have that kind of awareness. We do not even have support groups. If I have some issue or some. Breakdown, there are days when we get breakdown. And trust me, it is not the fourth day. It is every second day that we get that breakdown. And that is the time when we need to speak to our fellow mothers, fellow parents. But unfortunately, we do not even have that support group. So awareness? Yes, definitely not. I don't think so. Our government organizations or our government is working efficiently to raise the awareness of disability in general. Because what I understand is that, be. It schools, be it government organizations, be it NGOs, they just assume that any or all kind of disability can just. Fit in one box. They do not understand that disability can be of 100,000 types. So if we only talk about spinal bifeda, every spinal bifeda child will have different problems, different issues. Probably somebody will be able to walk with support, somebody will not. Somebody will be on wheelchair from the birth, somebody will come on wheelchair after ten years. So that's why we call spinal bifida snowflake condition, because every child of spinal bifida is different with different issues. For sure. There is no awareness. And I feel that we, as parents. We are the experts why our government. Cannot take help from parents rather than people who do not even understand, who do not even have that empathy for people with disability. Just, I want to give you one example. So we have this Paralympic committee, and in that committee, except one person, Ms. Deepa Malik, who's a wheelchair user, there is nobody in that committee who's a wheelchair user or a disabled person. So if a person who's not disabled, how will that organization will understand how to deal with parathletes? You will not believe, ma'am, last year I have spoken to multiple people in that committee. They had no idea what they are taking out from their mouth and that they will not understand. They will not have that empathy unless and until they have not gone through it. So this was just an example. We need disabled people out there to understand what to do with the kids of our. Absolutely. I agree with you, Shilpi, on this. So before I end the podcast, Shilpi, I just want for all our listeners who may be going through a situation like this, that there is the Spina Bifida foundation in India that's run by a pediatric surgeon called Dr. Santosh, and there are about one or two cases of spina bifida that are detected for every thousand live births in India. And this also happens because of the lack of folic acid. So folic acid intervention is something that I think all women during their pregnancy must take into account. And of course, Shilpi, so much of courage that you have and the resilience that you have. And of course, for a wonderful daughter like hope, we wish her all the best in her endeavors and in her music. Love for her music and for sports, and lots and lots of courage to both of you as a couple. And thank you so much for being on today's podcast and talking about a condition called Spina Bifida, which is my first podcast ever to talk about a rare and a very less known know found among young children. Thank you so much being on today's. Podcast to you, our dearest listeners. You can find us on your favorite streaming services, Spotify, Amazon Music, Apple Podcast, and of course, on all other major streaming services with loads of love. We are the Mohua show, where we talk imandarise.