During this week’s episode of Disability Bandwidth, Sam and Nikki have a conversation with Shivani Shah, an architect, researcher, and accessibility consultant. Shivani sheds light on her efforts toward promoting accessibility and disability inclusion in India. She points out that the definition of disability is still evolving in India and that the country is in the process of breaking down stereotypes and understanding the various types of disabilities recognized by law. Unfortunately, physical accessibility remains a distant reality for many people in India. There is still a lot of work that needs to be done to raise awareness, educate people, and incorporate accessibility into everyday discourse. Shivani also shares her experience of founding a startup called AxcesAble Designs, which aims to tackle accessibility issues in India and was established to address the basic rights of persons with disabilities in the country.
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Transcript
[00:00:05] Nikki Nolan: Welcome to season two of Disability Bandwidth.
[00:00:12] A show where we talk with experts in disability about their journey, life and inspiration.
[00:00:17] Sam Proulx: I’m Sam Proulx.
[00:00:18] Nikki Nolan: And I’m Nikki Nolan.
[00:00:20] Sam Proulx: Let’s get started.
[00:00:21] Nikki Nolan: Could you tell us who you are?
[00:00:22] Shivani Shah: My name is Shivani Shah. I am from India. My pronouns are she/her. I am an architect, researcher, and an accessibility consultant. I have my own startup called AxcesAble Designs, LLP, and currently, I’m working as a project coordinator in an NGO for disability in India. And I’m working for the team of accessibility and reasonable accommodation.
[00:00:49] I am a brown skin toned, short woman. I have long black hair. They’re open right now. I have black eyes and I’m wearing a black top right now. And in my background, I’m sitting in my office. In the background, you. can see an old black wall with a doll hanging and a round table.
[00:01:10] Sam Proulx: I mean, it sounds like you’re doing a whole bunch of things all at once, which is really impressive. You’ve got a startup and you’re doing some project coordination and just all kinds of different things. And is it kind of trying to do everything all at once, or is there a theme and a throughline related to all the things that you’re doing?
[00:01:33] Shivani Shah: I think it is everything related to one aspect, which is disability inclusion and accessibility. My startup also works for it, and it’s a very new startup, four to five months old. And I’m also associated with this NGO because working for the cause of disability in India is generally very difficult to work as an isolated entity.
[00:01:57] It’s always better to work with a community which already has stakeholders and beneficiaries and a close connection with the larger community of disabled people around the country. So that really helps in expanding the impact of the kinda work all of us wanna do together.
[00:02:16] Sam Proulx: Yeah, absolutely. And I know this is a really broad question, but I’m gonna ask it anyway because I feel like when we talk about accessibility, we hear so much about North America and we hear so much about Europe, and I don’t think we hear as much as maybe we should about India. And so, what is the state of accessibility and digital inclusion there right now?
[00:02:48] And how do you think it compares? Are you ahead of the game or are there maybe some challenges that need to be overcome that aren’t in place in other areas? What’s the overall state of the union of digital inclusion right now in India?
[00:03:05] Shivani Shah: First of all, we are still evolving with the concept of what disability really means. So we’re starting there and we’re starting to understand and break the mix and stereotypes about disability. We are still not very well versed with all kinds of disabilities that are recognized by the law, so I think we’re there right now.
[00:03:26] And we are picking up from there and coming on the top slowly, slowly. And I would say more about physical accessibility here than digital accessibility. Cause that’s the field from where I come from. And I think physical accessibility is still a very far-fetched idea. So many organizations in India are working on it, but what we are more, for so many years we were working more for the basic rights of persons with disability, and access to access to sanitation, access to education, access to basic living, access to clean drinking water, access to opportunities. Those were the major hurdles that we were tackling as a country. And now we are slowly looking at accessibility in terms of physical and digital. So I think we are there right now.
[00:04:16] And we still have a lot of work to do in terms of raising awareness, breaking the stereotypes, educating people around disability and inclusion in India.
[00:04:26] Sam Proulx: Yeah, it’s a good place to be though. And you’re pushing the conversation forward and that’s so important. It needs to be something that we’re all thinking about and talking about. So, you know, that’s exciting to hear.
[00:04:42] And so it sounds like eight months ago you took the decision to found a startup. That’s a pretty big decision. What brought you to that moment? What was your journey like and what put you over the edge and made you think I’ve gotta make a startup and do this?
[00:05:00] Shivani Shah: Honestly, I’m usually very hesitant when people ask me about what I do or what my work is like. Because the majority of people here who aren’t from the field of accessibility, they do not understand what I do. Being known as an architect and then jumping into the field of accessibility feel like a big transition.
[00:05:21]The dots do not connect for most of the people. And the reason why I took the decision of having my own startup and taking that step for myself is that not a lot of people are focusing on these issues of barriers in the physical environment for people with disabilities. And if you go and find projects to work on, like as an independent person, if you want to find projects to work on, I don’t think you can find many projects and support yourself.
[00:05:46] And so I thought maybe it’s time to get into the field yourself and start working and seeing what are the on ground challenges that are really restricting so many organizations over the years to not really question why places are not accessible.
[00:06:05] So I think that led me to take this bold step of jumping into it.
[00:06:11] Sam Proulx: Yeah. And what’s exciting you, because speaking from experience, it’s a lot of work to have a startup, isn’t it? And so what drives you? What gets you up in the morning and makes you excited to do this?
[00:06:27] Shivani Shah: I think, now that I’ve joined this place as a project coordinator, what makes me excited is completely different from what I was getting excited for when I was doing it independently. And honestly, when I was doing it independently, it was very difficult, very difficult to get up in the morning and answer yourself, what are you really doing?
[00:06:49] And what are you trying to achieve? Because it’s a collective goal, where all the whole country, all of us, we have to come together and fight for it. And there has to be a movement. But since the time I’ve started working here with the people who are all for the cause of inclusion, I think it’s become very different for me because every day I’m here in a day school, I see children with disabilities. With different kinds of disabilities, and I see their problems day to day.
[00:07:18] And I see how they grow and how one accessibility decision can really change how they can achieve their goals in the future. So I think that makes me really motivated and people around all of us are equally enthusiastic day in, day out. We just talk about how and what we can really do together. So I think this whole environment is fantastic to be in and the support is really required for someone to be in and to be able to put out some work.
[00:07:48] Sam Proulx: Mm-hmm. Yeah. Community is so important, isn’t it? And I think sometimes maybe there’s a sense of being overwhelmed, right? Because you’re looking at, oh, there’s so much work to do, and there’s so many improvements we could make. And how do you decide where to start?
[00:08:05] Shivani Shah: I think that’s a very interesting question because that’s an every day for us, especially for me. Because when you have so many ideas that you want to work on and you want to implement in so many different aspects, it can usually happen that you don’t know where to start from. But what I’ve realized is that the first step for us always has been education.
[00:08:28] Always has been training, always has been awareness. And so any stakeholder we talk to, any program we want to conduct, anything that we have to do has to start with education. And I think that’s the basics. And then, I mean, that is the way we do all the work that we are doing. So I think education and training and awareness, those are the things from where we start and that’s why we are targeting schools and colleges.
[00:08:56] And we are targeting to include them in the whole conversation of disability inclusion right from where they’re probably in six standard, and then they’re gonna go to universities. I think that’s where we’re more focusing on rather than going out to the stakeholders and convincing them to really do something for disabled people.
[00:09:14] Nikki Nolan: That makes a lot of sense. What has shaped your perspective around disability?
[00:09:19] Shivani Shah: I think the most prominent event that has happened was my final architecture thesis. So I wanted to explore the condition of autism and how learning environments are designed for them, and that was my fifth year research thesis in architecture. And when I took up that decision, my faculties were really nervous about me because neither them nor me, none of us had ever met a person with autism before.
[00:09:47] Nor did we have any idea about what this condition could be and how space really relates to autism. And I think that decision of understanding a particular condition and how it really relates to different ways in which we see and we feel, and you know, other things. I think that’s really changed my life and also life with most of the people that I am connected to.
[00:10:13] Nikki Nolan: I’m curious as someone who is autistic, what are some of the things that you learned about space and autism? I’m really curious about that.
[00:10:19] Shivani Shah: Sure. I think the first thing that I learned was how to really understand autism, because, when you’re doing research, you are mostly looking at secondary literature. You’re looking at all sorts of things that are written about autism but not a lot of firsthand experiences are documented.
[00:10:39] Especially in the Indian context about people who live life with autism or are autistic, whatever. So, I mean, when I was going through all this literature, I had a very treatment based medical way of looking at autism. So my thesis started with autism, conditions, whatever, whatever.
[00:11:01] And then we talked about signs and symptoms and that was how I was looking at autism. But it all changed when I went to my first case study in a school, one of the first schools in India, an autism day school in Delhi. And when I went there I actually met children with autism, interacted with them, stayed for a week there and understood things that they do, interacted with so many others, teachers and caregivers.
[00:11:29] That’s when I realized the way I was really looking at it was completely different. Because when you see autism as a condition and then you say, okay, now we need to design something that can fix the condition or that can change the condition, or that can modify the condition. So what can be the design aspects that can really do that?
[00:11:47] So those were the questions, research questions that I initially had, but then later on, my perspective completely shifted because it was not to cure the condition. It was not about how to really fix whatever was going on in the condition. It was more like, how can you make a more comfortable and conducive environment for them?
[00:12:09] And that is the first shift. And then, the whole approach changed. Then I went more into reading a lot of autobiographies about people with autism and then in those autobiographies, I’ve found how people relate to people. How people relate objects, to space, to form, to color, to everything.
[00:12:32] I mean, all these autobiographies are different cues. And what was so interesting was everything was so different from each other of one person’s perception of how they looked at a space. Was different from another person’s perception. So it was a very complex challenge to really understand what really has to be done in terms of modifications for an environment.
[00:12:57] Nikki Nolan: That makes sense. Yeah, that makes a lot of sense. And I think a lot of people who, and I’m going off on a tangent, sorry Sam, I’m taking your tangent space- but a lot of people approach disability or even like autism from this literature or documentation of what the disability is without actually getting and talking to people with the disability.
[00:13:21] And that gap, I feel like, just makes the space even harder to comprehend. Like when you co-create with people who actually have the disability, more realistically, I feel like you can move towards improvements in disabled people’s lives. Opposed to, we’ve seen this with a lot of technology where they try to create something that is like a smart cane for people who are blind and they don’t work with people who are blind and things like that.
[00:13:49] I’m sure you, Sam, can talk a little bit more about that. It’s really interesting. I’ve seen it. It’s very prevalent.
[00:13:56] Sam Proulx: Mm-hmm. And I think some of that comes out of fear, right? And it was really interesting to me, Shani, that you said that there was that fear at the beginning, right? You’d never talked to someone who experiences autism and you’ve never interacted with someone and that can be scary. And I think there are some people still feeling that today.
[00:14:16] And so how did you move beyond that and go ahead with it? And, what advice would you give to people who are feeling that now, who want to get involved, but are maybe experiencing some of that fear and feeling unsure?
[00:14:32] Shivani Shah: I think the first thing is to acknowledge the difference. Yes, there is a difference. Of course there is a difference, but also to say that the difference is a part of all of us. I mean, there’s a very thin line between difference and discrimination, and sometimes we feel that by acknowledging differences we might discriminate.
[00:14:54] But I think it’s very important to acknowledge that all of us are different in the way we see, in the way we talk, in the way we wanna be seen, and in the way we wanna be looked at and spoken to. So that is the one thing we really need to acknowledge while we are approaching anyone with people with disability or without people with disability.
[00:15:14] And also then to accept the fact that even if they’re different, they’re all a part of a larger, diverse group that we belong to. And I think that makes things very – so much easier. And in my case, how I landed on the topic of autism when I had never even seen or met a person with autism. It was because I myself had gone through, in the past 2 to 3 years back, before I took up the topic, I had gone through a very rough phase of severe anxiety and depression. And from there, I kind of started reading more about psychology and started reading more about how environment really has the power to shape how we respond and behave.
[00:15:56] And I think from there I really started looking at things very differently. And one of the most important realizations that I came across through all these studies was that people perceive there is more than one way of perception.
[00:16:18] And that was something not there with me. Like I had no idea that people can perceive the same thing in a very different way. Of course, I knew that meaning making is different, association making is different, but I had no idea that people could perceive the same thing in a very different dimension altogether.
[00:16:36] So I think that basic understanding is very important, even to have empathy for someone. It’s very important to acknowledge that the way they would perceive something and interpret it might be different. And so we better be prepared to really welcome whatever is coming, rather than getting fearful about it. So I think that that would be one thing that I have to say on this.
[00:17:00] Sam Proulx: Yeah, absolutely. And it’s so interesting that now you find yourself working with an NGO. And working in this accessibility space, but there is kind of a desire to make people with disabilities fit into boxes, right? To be all the same so that it can be quantified so that you can make a rule that says, oh, we just have to do this and make this law.
[00:17:28] And then everything will be accessible and will be perfect. But with those of us, for example, who are blind, it can work that way. But with things like autism, everybody’s experiences and perceptions and needs are slightly different. And so I’m really curious, how do you respond to that challenge in what you do today as you try to make things more accessible for everyone? Even though everyone’s needs are different.
[00:18:00] Shivani Shah: Sure. So, I’ll take an example of my project that I was working on the previous year. So we were working with a museum, the Museum. We had a lot of interactive, digital interactive experiences, and we had a challenge with creating a guided tour and an experience for children with autism for a one day tour.
[00:18:29] And one of the most difficult things for us was the people who were going to come, as so many of them were sensitive to sound. Now, since children are sensitive to sound, how do you really get them in a music museum? Because it’s filled with different kinds of sound, filled with different lighting and ambience.
[00:18:49] So what do you really do about this situation? Can you do it or can you not do it? Can you really have that experience? And I think that that was one of the most challenging things because out of all the people that were going to come, some were not sensitive to music and some were, so what do you do about this situation?
[00:19:08] And I think there is the concept of reasonable accommodation. So when we say accessibility, of course we want to make everyone to be able to have that experience, to be able to get the access to the experience physically, financially, both ways. That is the first thing in access.
But when we talk about different people with different specific roles there, we talk about reasonable accommodation where we say, okay, out of the large group of hundred children that we wanted to invite, and we had a very thorough research, we understood that, okay, these many people read specific requirements for music. These children do not need specific requirements for music. So what do we do with the environment? There were some modifications that the museum could do at a larger level to create an ambiance that everyone could be more comfortable with, but children who were seriously affected by loud music, we had provided them with different kinds of headphones or you know, things like that.
[00:20:06] So I think at that point, very specific customized provisions are what can really make a difference. But at a larger level, one has to really seek collectively what benefits everyone. Because if we do not, then half of the children from the museum would’ve been excluded. Because parents were not really enthusiastic to come to a tour of a music museum because they were very scared of what if he or she has a sensory breakdown, has a meltdown, what do we do about it?
[00:20:38] And so we also created calming zones, at different points in the whole experience. We had calming zones, we had sensory zones, we had escape zones. We had provisions for all such things in the entire trail of how we were going to make the experience happen. So I think those kinds of provisions are really important.
[00:20:58] Breaks are really important at different points, in the whole experience. So I think that is what we can really do to help accommodate for the most diverse kinds of needs.
[00:21:09] Sam Proulx: Yeah, I think it’s really, really interesting and it’s something that I think about a lot and struggle with a lot of where do you draw the line and where is reasonable accommodation and where is not, right? Because we never want to exclude people, but like there are some experiences and things that are not for all people and embracing that as part of diversity.
[00:21:32] Nikki Nolan: I mean, I’m completely blind. I should never be an airplane pilot. And if I’m flying an airplane, we probably have bigger problems. Who knows. Who knows? Sam can’t.
[00:21:43] Sam Proulx: I don’t know. I don’t know. I don’t think I would get on the airplane that I’m flying, nevermind bringing passengers on. But my point is how do we, and it’s interesting, Nikki, that you push back on that because where is the line? Where do we say that? Like some experiences aren’t good for some people and that’s okay.
[00:22:02] And we can accept that. And where do we need to accommodate? Like there’s a line there and I always struggle to articulate where and how to draw it.
[00:22:12] Nikki Nolan: Interesting.
[00:22:13] Shivani Shah: That’s a brilliant question. The way we deal with this question most of the time is that providing or accommodating for a smaller group or one person, if we are creating a harmful or a toxic environment for other people, I think that’s where we draw the line. So an accommodation for one person, an accommodation for someone should not be a barrier for most of the people or should not be a space where it’s uncomfortable for other people.
[00:22:45] So I think that’s where we draw the line. Another thing is we draw the line more when financials are included, what can we really do? How much money do we have? And I think that’s also a really, very fundamental aspect in any kind of change in terms of accessibility that we want to bring.
[00:23:04] Our finances are really important. So that is also another thing where we draw the line, because we know how much we have and to what extent to provide reasonable accommodations for a particular category of people. So that is also another thing that automatically the line is there.
[00:23:22] So I think those are two places where we draw the line.
[00:23:25] Sam Proulx: Yeah. And when it comes to finances, sometimes you don’t get the choice because you just don’t have all the resources that you want to, and I think that’s really interesting because it goes back to what you were talking about earlier. Which is that everyone, everything starts with raising awareness and with education because once people are more aware and more educated, you’ll have more resources.
[00:23:49] And so I’m interested as you seem to be focusing a lot on starting with education and starting with raising awareness. What do you find is the most effective way in your experience to bring new people on board who are maybe not aware of this and who need to be taught? What do you find is the most effective messaging to get them on your side and onboard for you?
[00:24:15] Shivani Shah: I think having more and more voices of people from the community itself is very important. Mostly persons with disability largely in the public domain are invisible in India. You don’t see them in public, you don’t see them using spaces, you don’t see them navigating, you don’t see them doing everyday things.
[00:24:36] One of the larger parts of it is also because everything is inaccessible physically. So how do people really come and enjoy and use spaces? So that’s one barrier. But otherwise, people who need to really come in this space to be visible and be expressing themselves and self-advocate groups.
[00:24:58] A lot of individual advocates are coming up now on social media, on different platforms, and they’re talking about their everyday experiences. They’re talking about how they’re not different in terms of what they need as compared to able bodied people.
[00:25:14] Nikki Nolan: Mm-hmm.
[00:25:14] Shivani Shah: I think those are very effective ways.
[00:25:16] Like, for example, one of one of my friends who is also a wheelchair user. She creates all these kinds of posts on Instagram where she talks about her every day and she talks about her work and she talks about her feelings and she kind of breaks this barrier that I feel the same way as you feel, and I want the same things as you want.
[00:25:38] And, we all are the same, but I might need certain assistance at certain places and I might need something more than what is not there in the environment, like accessibility. So I think those are the things that really help. While we approach a lot of architecture colleges and we interact with students, they’ve never really met or seen people with different kinds of disabilities other than visual impairment, hearing impairment and a wheelchair.
[00:26:09] So the concept of disability is very limited to visible disabilities. If you can spot a person with equipment like a wheelchair, but if a person has Multiple sclerosis (MS) and they’re not in a wheelchair, you will never be able to identify or recognize them also as someone who has a disability.
[00:26:30] So I think getting more voices from the community is most important, and having the space like a safe space where people can interact with each other. Persons with disabilities and able bodied people who can interact and share a common platform.
[00:26:46] Sam Proulx: I’m really enjoying this conversation on the Disability Bandwidth podcast, but right now it’s time for a break for a word from our sponsor.
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[00:27:40] Sam Proulx: And we’re back. Let’s dive right in.
[00:27:42] Nikki Nolan: What outcomes have you experienced while you’ve been exploring and talking about disability?
[00:27:48] Shivani Shah: One of the outcomes that we faced was that we had this ongoing debate about inclusivity, exclusiveness, and exclusion. And it’s a very interesting difference to really look at. Because a lot of times persons with disabilities, because there’s a lot of stigma and about the way people perceive persons with disabilities here, they generally prefer a more exclusive entry to someplace like, for example, the museum project.
[00:28:10] Parents wanted children to have an exclusive time for their visit, not as a part of the everyday museum timings and everyday museum visit. Now, one could argue that if we are talking about inclusion, do we really need separate timings?
[00:28:37] Do we really need separate ways of having them as a part of the experience? And I think the answer to this is that providing exclusivity does not really mean excluding. That is, I think, the first step towards inclusion because that is the way they’re more comfortable to be in a public space.
[00:28:58] And that is the way we are more able to take care of their needs and then slowly integrate them. So I think the journey of inclusion is not just to have them, and that’s inclusion. It starts with provisions, understanding the provisions and providing exclusively for them, and then integrating them and then inclusion happens.
[00:29:20] So I think it’s a long journey for inclusion and it just cannot just happen if you are a part of one program and everyone’s together and we are included. I don’t think it really works like that. So that was one of the outcomes that we experienced, that is what we really need to provide in order for them to be able to feel that they’re included because feeling included is very different from having provisions for inclusion.
[00:29:46] Sam Proulx: I’m just thinking about that and processing that, right? Because accessibility is a journey and we have to start and iterate and slowly move forward. And yet as a person with a disability, there’s this pressure, right? We want everything to be better right now. I agree with you, but it’s a process that we have to go through and it’s really interesting. I’m interested in hearing your thoughts on India’s vast and incredible diversity. Is that a challenge for accessibility work?
[00:30:30] Or does it make people sort of more understanding of diversity and different needs and different desires and different cultures? Because if you think about North America, we have like three different languages kind of, right? Like, it’s like the English, French, and Spanish.
[00:30:50] And India has like hundreds. And North American culture, I don’t think it’s that diverse compared to India. And so I’m just wondering, does that diversity hinder or help you in your efforts?
[00:31:03] Shivani Shah: India has seen diversity in so many ways, in terms of language, in terms of religion, in terms of belief, in terms of diversity in every sense. And we have a demography where we have elderly also. We have a huge chunk of the youth population now in India. So we have, in all sense, a very diverse group, background in India has been really good since ancient times in order to really make peace with all sorts of diversity and live cohesively as a nation. What really hinders when we specifically talk about accessibility is this notion that provisions for accessibility are not universal in nature.
[00:31:51] So provisions for accessibility are something for which you have to pay extra. You have to financially go an extra mile to do something. And because when we talk about accessibility, we are definitely talking about businesses. We are talking about corporations, we’re talking about all of these stakeholders.
[00:32:11] We’re responsible for making the environment accessible. And one of the first things from a business point of view, I’d always think that okay, if I have to make a ramp, the ramp is for a person with a wheelchair, a wheelchair user, the ramp is only for a wheelchair user. That is my first set of thoughts. How many wheelchair users really come to my restaurant in a year, in a day? 1, 2, 10? As compared to how many non-wheelchair users come?
[00:32:41] So does it give me a benefit to really have a ramp around? From a business perspective. Secondly, most people with disabilities in India fall into lower economic zones. So another question is, do they have the paying capacity to be able to come and enjoy life? So those are the on ground barriers that businesses face while in order to decide if they want to make their places accessible or not.
[00:33:10] And what is the benefit apart from the social benefit that yes, we need to make it and do it for a social cause? So disability is still seen as a social cause, as a charitable cause where either if someone donates or gives it for free, that is when you really use it. But otherwise, from a business point of view, it is not seen as a very lucrative option to really make things accessible, in a larger, disability perspective.
[00:33:38] So I think that is where the gap is, that we are facing.
[00:33:41] Sam Proulx: Yeah. And getting people to understand right, that a ramp is better for strollers and it’s more accessible. Things are better for everyone. It’s an important conversation.
[00:33:53] Nikki Nolan: It’s super hard. The thing that was really curious to me is it’s sort of this self-fulfilling cycle. People can’t afford to go to restaurants and so they don’t make them accessible. But is it because, you know, the world is so inaccessible that people with disabilities just find themselves in lower economic situations.
[00:34:11] So we have to start pulling on those things and start solving for those things so that we can lift people who have disabilities out of economic hardship. Because sometimes the barrier is just like inaccessibility, you know? It’s more of a statement than a question.
[00:34:29] Shivani Shah: Yeah, it’s a loop is what I want to say. If you want to increase visibility, you need accessibility, but for then you need financial stability, you need accessibility and opportunities, and it’s a never ending loop. There has to be a break somewhere. Somewhere, someone has to take the responsibility that, okay, no, we are going to now start becoming accessible, or we are going to fight for accessibility.
[00:34:56] Have a moment that you haven’t seen yet. So somewhere it has to come.
[00:35:02] Sam Proulx: Yeah. And I mean, if you push hard enough, it will come right at you, as you keep doing the work that you’re doing and that it seems like you’ve been involved in for quite some time. And I’m really curious as you’ve done this work, because since you’ve gotten involved in accessibility, what surprised you?
[00:35:20] What did you discover? What happened that has really surprised you? Can be either positive hopefully, or maybe negative. What surprised you as you’ve done this work?
[00:35:31] Shivani Shah: Yeah. One thing that surprised me was that when you talk about disability, the thing that we are talking about in the minority community, because, the latest Indian census says about 2.2% of India’s population are persons with disability. We largely miss out on people who have temporary disabilities, elderly populations, pregnant women, and children.
[00:35:55] We largely miss out on a very, very large group, of mostly all people who might benefit from these kinds of accommodations. So I think that is one shift that is really, really important. Only then all of us will start realizing how this is benefiting equally. So I think that is one thing that really surprises me. If you want to have some accommodation for someone and if they’re elderly, one of the misconceptions is elderly people do not go out so much, but all elderly people have fixed places to go as an old person.
[00:36:31] There is a thought that as an old person, you might not wanna go to the theater, to the movies, because now you are old. So act according to your age. And you only are shifted to particular kinds of places like temples or religious spaces or community spaces. So I think these boxes that you were talking about, that once we are at a particular stage in life, we start putting people in those boxes that, okay, this demographic can only do this.
[00:36:58] This demographic can only do this. We also do it for economic zones. We talk about, okay, people with this kind of economic zone can only do this and they can only do this. We largely cancel out the whole aspirational part of people that what they really aspire to do if provided with certain kinds of accommodations.
[00:37:17] So I think that really surprises me. And another thing that surprises me is that so many stakeholders, so many people really want work for accessibility, really wanna physically make their places accessible, but always fall short of money. Money and finances to make these kinds of provisions is a very big challenge.
[00:37:40] They also fall short of the right guidance. Guidance in terms of how to really go about it. So you see, you’ll see if you walk on the streets in India, you’ll see so many places with ramps with a good intention of inviting all sorts of people with disabilities who can benefit from them, but then the slopes are completely wrong.
[00:38:01] So the intention was right, but then, the way to do it was missing completely out of this. So those are also some of the things that really surprises me when, so people want to do it, but they’re not able due to certain barriers. So I think it’s very important to acknowledge that barriers are from both ends.
[00:38:21] We keep on complaining that things are not accessible, things are not accessible. But when you look and empathize with the other part of the community, we also need to understand what are the barriers that they face, and then how can we really bridge the gap between both.vI think, government is now, in different states.
[00:38:40] They’re pushing a lot. So after the accessible India campaign got released, all the states have been pushing, pushing a lot in terms of disability and accessibility awareness and in making places accessible, especially the public places, places of most importance like banks and courts and hospitals.
[00:38:58] But the progress is still slow as I say.
[00:39:02] Nikki Nolan: What is this ad campaign that you just talked about? I’m curious. I don’t know about it.
[00:39:07] Shivani Shah: Okay, so, accessible India campaign. It’s a campaign, accessible India campaign is a campaign by the government of India, which talks about three things to make India accessible and the vision was by June 2022. So the vision was to have India accessible in three zones, build environment accessibility, transport accessibility and information and communication, ecosystem accessibility by June 2022.
[00:39:40] And that’s what all of us were aspiring for. But, this campaign got into action in 2015, under Sugamya Bharat Abhiyan, so that’s like a larger umbrella, which started this campaign under the government of India in 2015, where they had a very big vision of working under three broad areas.
[00:40:02] June 2022 was like a limit for each state to be able to have their cities in the state accessible. All public buildings, which are government-owned or privately owned, all of them, have to be compliant with the harmonized guidelines and space standards, which are released for processes with disabilities.
[00:40:24] So that was a phenomenal campaign. Very ambitious, very thought through all the guidelines are there, but then we fell short of implementation and monitoring. So, yeah, so the deadline, we far passed the deadline. We are entering 2023 and we’re not really so close to the vision that we had for an accessible India.
[00:40:47] Nikki Nolan: So what are small ways people can start towards that path of inclusion and access, furthering the rights of people with disabilities?
[00:40:56] Shivani Shah: The first way is for persons with disabilities themselves to get educated about their own rights. And that can happen through various ways. Now everything is available on all platforms online, so it’s very accessible in that sense for most people. Yeah. But for a lot of people it’s not, it’s very important that each individual realizes their own rights.
[00:41:22] What can they do? What can they not do? What can they really speak about? And so these days, mostly all organizations with disability also have a legal team. And it has been running for many years now, but the legal team really helps persons with disabilities and their family to understand what is going wrong and what can they really ask for?
[00:41:45] So I think that is the first area where one has to really support persons with disabilities and their families, to understand what they can do and ask for, and demand for. That is the first way one can really go about it and questioning why it is not done for us yet? That is one way. I think the second way to do it is just look around your house.
[00:42:08] India has always had a system of joint families, very closely with families where you can see and live with grandparents and your parents and then your uncles and aunts and all sorts of people. So the diversity already exists in the households of people in India. So I think when you start looking in your house and see how people in different ages have different sorts of issues and also issues interacting with the spaces around them, I think from the house, only one can start really questioning the idea of access and inclusion.
[00:42:44] I think that is another thing that can happen, and very easily that can happen, from the house. The third thing that would be, I think, is always awareness and education through various means, through social media, through colleges, through schools. We also have a rural rehabilitation program where we go to villages in and around our city and we create a community.
[00:43:11] People get them together, educate them in a regional language about the most difficult topics. We break it down and we make them understand about what are the rights of persons with disabilities, how it is different and even help them and support them. And so many other things like access to healthcare and access to other things, like education and water and sanitation and so many other things.
[00:43:34] So a community-based program, a rural rehabilitation program, those are some ways that one can really start indulging themselves, with the whole question of disability inclusion, also refraining from a charitable perspective of disability.
[00:43:57] I think that is something we’ll have to stop doing now. In India we’ve only looked at disability as a charitable cause. We donate things to group homes and organizations for disabilities because we think it’ll do something good for us. So it’s more like that kind of thinking. The charity will bring good to us and so let’s go for it.
[00:44:20] Let’s do some charity. But I think this charitable model has to be replaced by the rights based model where we are more concerned about their rights and the way they would want to live in society.
[00:44:32] Nikki Nolan: Hmm.
[00:44:32] Sam Proulx: Yeah, that last point is so important. I know our time is drawing to a close. But, thanks so much for being here with us today and for taking the time to engage in this conversation about you and your work and about the wider state of accessibility in India because, all of this is so important, and so critical as we move the global conversation forward.
[00:45:00] I wanted to close off by asking, if folks would like to find you and would like to keep up with the work you are doing and your startup? Where should they go to find you? And, is there anything else that you would like to promote for folks to check out?
[00:45:15] Shivani Shah: Yeah, they can find me on LinkedIn. They can find my page on Instagram. Also email. I think those are the three easiest ways to reach out to me. I’m always up for conversations. So if someone is going through this podcast and they find something interesting and they want to talk about it or work on something together, I’m always up for it.
[00:45:37] Always looking forward to working on accessibility and inclusion.
[00:45:41] Sam Proulx: Final question as we head out, is there anything that you wanted to talk about or share with us that we didn’t ask you?
[00:45:48] Shivani Shah: Yeah, I actually worked as a UX researcher also for some time.
[00:45:52] Sam Proulx: Hmm.
[00:45:53] Shivani Shah: Yeah. Which was like a period of time that I mostly worked as a researcher, then shifted to UX research also, but was in the field of accessibility and disability. All of that seems like a puzzle for someone from outside.
[00:46:09] For me, everything is really connected.
[00:46:13] Sam Proulx: Yeah, it’s a long and winding journey, right? Architecture, researcher, UX researcher, and yet it all circles around this central thing. It’s been so great to talk to you today and learn about your journey and the work you’re doing. Nikki, any final thoughts?
[00:46:28] Nikki Nolan: No, just thank you so much for being here and spending the time with us. This is a perspective that we haven’t heard a lot of and so we’re really grateful that you were able to share it.
[00:46:38] Shivani Shah: I’m so very happy to have this conversation. Thank you so much for inviting me and for being interested in this perspective as well.
[00:46:51] ]Sam Proulx: Thanks for listening to Disability Bandwidth. If you liked this episode of Disability Bandwidth, please subscribe and share it with friends and family. Today’s episode was hosted by Sam Proulx and Nikki Nolan. Edited and produced by Nikki Nolan. Transcripts are written by Emma Klauber. Music is created by Efe Akeman.
[00:48:59] Special thanks to everyone at Fable who, without their support, this show would not be possible. You can find out more about Disability Bandwidth on Twitter and Instagram @disabilitybandwidth, or on our website at www.disabilitybandwidth.com.
[00:49:12] Music.
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