AXSChat Podcast
Podcast by Antonio Santos, Debra Ruh, Neil Milliken: Connecting Accessibility, Disability, and Technology
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AXSChat Podcast
Navigating the Challenges of Invisible Disabilities
Join us for an enlightening discussion with Anjali Vyas from the Pune chapter of the Multiple Sclerosis Society of India. Anjali's journey, starting from her initial symptoms of optic nerve pain and vision loss to her eventual diagnosis, is a powerful testament to resilience. As a chemical engineer and IELTS trainer, she shares her compelling story and her advocacy work through her organization, Believe in the Invisible, which aims to raise awareness and support for individuals with invisible disabilities.
Crucial conversations unfold as we tackle the significant challenges in disability recognition and documentation in India. Chronic neurological conditions and congenital heart conditions often slip through the cracks in official statistics, resulting in policies that fail to provide adequate support. We shine a light on the urgent need for detailed data collection, including gender-disaggregated data, and discuss how social stigma and harmful cultural beliefs exacerbate the marginalization of individuals with disabilities, particularly women and transgender individuals.
Lastly, we dive into the labyrinthine process of obtaining a disability certificate, especially for those with invisible disabilities like multiple sclerosis. Anjali shares eye-opening insights about the bureaucratic obstacles and societal misconceptions that complicate this journey. We stress the importance of education about disability rights for both the private sector and disabled individuals. Moreover, we underline the necessity of a holistic, inclusive approach that supports individuals and their communities, fostering a truly inclusive society. Tune in for a candid and thought-provoking episode that highlights the importance of advocacy and systemic change for disability rights.
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Hello and welcome to Axschat. I'm delighted that we are joined today by Anjali Vyas, who is joining us from the Punay chapter of the Multiple Sclerosis Society of India. Great to have you with us. I know we were just chatting before you came On Air. But please tell us a little bit about your background because it's interesting and the work you're doing as well. So welcome. It's great to have you with us.
ANJALI:Thank you so much. My name is Anjali Vyas, and I'm a person with multiple sclerosis. I have been living with this invisible, neurological, autoimmune disorder, also recognised only a recognised disability in the Disability Act in India, since the past ten years. The recognition of multiple sclerosis in the Act was done very recently, not very recent but in the year 2016. And it's actually win for our community because up until 2016, for a person with multiple sclerosis to come out, especially to have invisible symptoms has been a big challenge. And now to be recognised as a disability has actually, at least given us some rights, to which we at least bring more awareness. I am a chemical engineer by qualification and an ITLTS trainer which is an English language trainer by profession. I'm also the cofounder of newly registered organisation called Believe in the Invisible that advocates for people with invisible disabilities and their communities through storytelling. So in addition to my role as the joint secretary of MS society, Punay chapter, I am also working in the area of in general advocating for people with invisible disabilities in India.
ANTONIO:Anjali, can you share the story of your initial symptoms and diagnosis in MS and how that ended up changing your life and career path?
ANJALI:Oh wow, that's a very nice questions. I always like to answer that question when I'm asked that. So I was in my last year, which is like the founder year of engineering, like that the last leg. And I was just a month away from taking my exam, which is actually the most dreaded semester you know, we call it the semester. And I experienced some pain in some optic nerves in my right eye, optic nerve in my right eye, it was very unusual for me to experience that. I thought that perhaps it is an infection or conjunctivitis or something that maybe infectious in nature. From the outside, I looked 'normal.' There was no significant difference on my face or in my body for that matter. So for the first few days you know, I had that pain, that tingling in my optic nerve and of course, when three days passed and I realised there was something wrong when it comes to my vision because it got a bit blurry in my right eye. It appeared that something has perhaps pricked my eye and that's the reason why I can't see things clearly but then because I could see from other eye you know, that is the funny part. There is something wrong with my right eye. But after four or five days, it just so happened that I was crossing the road and I could not see the truck coming by. And fortunately I had my friend who pulled me back and save me from that terrible accident.
DEBRA:Wow.
ANJALI:I am really thanking her. That's when I realised that my peripheral vision is gone. I couldn't see the truck coming by and when I went to the ophthalmologist and complained the symptoms. He did all those preliminary tests, dilated my eyes, had some tests run. But even to him everything appeared absolutely normal. So he gives me certain medications, some eye drops and asked me to come if things don't improve but after I few days I realised that you know I could not see clearly because the vision was dropping. So when I went after a few days, after my first check up, he little a torch in front of my eye from which I could not see and asked me a few questions to answer. And when he asked me okay what you see, I had no idea what was happening because I could not even detect the light. But imagine the extent of vision loss in a couple of days, just like that. It was very unusual for a 20-year-old to have that symptom of vision loss, with no medical history of any such condition whatsoever and again, it was the prime of my life right. And frankly at that age, no youngster bothers to even think about what is wrong with their body right? But unfortunately, I said, I can't see, I don't even know that you lit the torch in front of my eye, that's what freaked him out. But you know, I really thank my God and my stars that day that he actually recommended me to a neuropathologist who ran some important tests, critical tests such as the MLI et cetera that's when the demyelination factor came into the picture which ultimately was told to be of multiple sclerosis. And again, it's something which is a tongue twister, still today too.
NEIL:I know that Debra has got a question. But for our audience really, we might want to explain what demyelination is. Essentially, this is the sheath around your nerves; right. And MS starts interfering with the sheath around your nerves which is what then causes the problem. Debra, over to you?
DEBRA:Yes. And thank you so much for first of all, all that you're walking personally. I know that you said you had had a fellowship, a three-year fellowship and towards the end the MS started affecting your life. I have a very dear friend of mine that has been diagnosed with MS. And it also attacked her eyes first. And so it is a scary diagnosis. And you don't know where it will go. And I know right now in the United States, Christine Applegate who is a beloved actress, a lot of people know around the world.
ANJALI:Yes.
DEBRA:And first of all, I was grateful that you took something personal and you made it your advocacy goal. You made it a way to help others. But I also thought it was such an interesting point that you said about because once again I live in the United States, I'm a global citizen but a lot of times there are things that I make some assumptions about. And one of those assumptions is that MS automatically be included in any disability or legislation and of course, I would be incorrect by saying is that. But one thing I would want to ask you is why, why is it important for a diagnosis like MS or any other diagnosis, to be included in legislation? I mean there's -- to me there is so many reasons why. But I, you know, I wanted to ask you that. And at the same time, I am intrigued about how India once again, we've had other Indian citizens on but as a reminder to the audience, India has a billion, almost five hundred million souls, in India.
ANJALI:Right.
DEBRA:Here in the United States, we have 330 million Americans, for example. And I'm not but I'm curious what India is going to do with all of these? How is India going to shift and change and value all of the people? And so, I was wondering if you would just talk about it from those angles. Why is it important that we are included in the legislation? Why do we have to make sure that people understand our lives and you know we were diagnosed with something like MS, how does that change us, how can you support us? Just taking us from that direction?
ANJALI:One friendship, but engineering, when I was diagnosed with MS. The fellowship was very recent. So, I think my very honest answer as to why a condition like multiple sclerosis should be recognised as a disability is because what is not seen is mostly not believed. It's extremely important that conditions are not just multiple sclerosis, I genuinely feel that when we talk about neurological conditions, you know, as a category in itself, it's very important for people to understand that it's neurological, it's not psychological. It's not in my brains that I'm faking my disability; right? It's actually something that is troubling me to carry out my regular day to day activities. Now why MS was very important to be recognised is because the majority of the symptoms, the initial symptoms and the challenges of multiple sclerosis but they equally effect the quality of life of an individual.
DEBRA:Yes.
ANJALI:And the most importantly it is a condition that is diagnosed in the prime of the life of an individual. So younger girls are mostly affected because of MS; right. So when I was planning my career, I wanted to do so many things. Again, I don't regret my decision of choosing my career, but when I did it, even that judgment of my life, switch my track from something to a different one. So when we had say that a country like India which has got the highest demographic dividend in the world, needs to have conditions like MS recognised as disability that people know, that it affects the quality of life of these individuals. It's important that you believe them. We are not faking our disability. We only need your support. And simply understanding that you know, even the disabilities which are not seen exist and that I might face some challenge at my birthplace for that matter, in terms of fatigue, let's just say. I'm severely fatigued some days. I just don't even feel like getting up from my bed and have a glass of water; right. And if I ask my employer to given me certain accommodations, like giving me flexible working hours or maybe getting me a parking spot in the way organisations parking space, I might not be believed and perhaps we question that. Why? You look normal, you're healthy. And don't worry, Anjali, it's all in your brain. Just be positive. I am positive. About you don't need to tell me that. Yes, I have been told these many statements and advice throughout my life and again, now I don't blame them, in retrospection. I actually feel that you know, building awareness is important than complaining and that's why I co-founded this organisation to build greater awareness, yes. I hope that answers your question.
DEBRA:That's a brilliant response. That was brilliant.
NEIL:Thank you. Yes. I think those issues that you raised around lack of trust and belief impact huge populations of people and it really is that lack of belief when people are asking for accommodations in the workplace is definitely, you know, an area where we need to educate more people and really work on the basis of trust. People don't ask for things for the most part that they don't need. But there is that lack of understanding still; you know. And not just in India, by the way, you know. This is a universal thing that people with invisible conditions get questioned.
ANJALI:So can I quickly add something here, one sentence. So in addition to all of that that I just said, it's also the stigma. It's the shame. It's also people's misbelief that it is the result of karma and especially when we talk about some of the very sort of thinking society, especially, I know that such a society exists everywhere in the world. But you know, I want to add one experience of mine that I was officering a glass of water to one of my educated family members and was hesitant of taking the glass of water from me because maybe it's contagious and he asked me that.
DEBRA:Oh my God.
ANJALI:And when I say educated family member, I mean it; okay. So we used to have conversations in science and what not and the fact he asked me that, not just once but twice, really made me work even more hard on this aspect of you know, dismissing and busting the myths around invisible disabilities. Because as I said, if it's not seen, people feel it might be contagious, it could be fatal or genetic; right.
ANTONIO:But in your experience and you know, based on your knowledge you know, of the social department where you are, do you feel that there are many disabilities, who are not considered officially as disabilities in India? Is that -- can you assume that?
ANJALI:Yes. Definitely, we can assume that. Because, you know, yes?
ANTONIO:Because something that we discuss in this forum for quite some times is about the number of people with disabilities; no, you know, how many people we have around the world.
ANJALI:Right.
ANTONIO:And my question to follow that is that in fact that disabilities is not recognised, it somehow creates a problem here because in the end, there are a huge number of people out there, who even if they have a disability, they don't show up in the statistics. And what -- you how this impact, society itself, families, and now this impacts the way that our government puts together policies to support this.
DEBRA:Great point.
ANJALI:Yes, yes. There is definitely a challenge when it comes to Government’s intervention when it comes to having this data. So the data has been the biggest problem of all times and I'm sure it's not just in many other countries, but for the disability’s communities, it had been a constant challenge. I can very happily say that things are improving definitely because the problem is when the data is collected it's a ten-year-old census data. Right? But the survey that was conducted in the year 2011, the results or the information of that census survey has been released last year. So this is an entire ten-year gap, actually somewhere is disadvantageous to our community because, then if there are no members, there is no data. How would we advocate for the policies to be even implemented for that matter; right and when you asked me that you know are there any other disabilities which might need that recognition or not. There are many. So when I say chronic neurological conditions, I'm happy that you know, some of the policies in sections in our Act, have been recently revised, very recently. A month, two months ago. And I'm very happy to see that they have considered a lot of other conditions as well. Of course, they cannot come up with exhaustive list but at least open to accommodating and adding new disabilities. But again you cannot just categorise the people into one set. There are also people with congenital heart conditions. It is invisible, when we talk about inflammatory bowel syndrome. Anything that goes below your heart and chest, even that's something disabling. So we need to come up with even these areas and sections and I am sure that we are going to work on these aspects as well. But coming back again to the fact that I think you were asking about the data; right? How important it is. So the challenge has always been collecting the data. Last year, there was this big -- I won't say a fight, but, yes a struggle for our community, where a very, one of the very important service that happened in India is National Health and Family Welfare Survey. NHFWS. That's one survey that is conducted in every small town or a village in India, in order to collect information into how many people live of what background, the ages et cetera. And up until the last year, whatever number of surveys were conducted had a question of disability added in that survey. Unfortunately it was dropped out in the recent survey that happened last year. It had been a bigger fight because whatever service was conducted in India irrespective of whatever sector you want to do it, I personally feel that the question on disability is something that should be a mandatory one. Whether you're you know, considering doing the survey on employment scenario, whether it is related to education. Even for that matter in climate change in gender and people, having a question delicately on the data of disability is something that I strongly feel must be included and I can see slowly things changing in our countries. I am sorry I missed any part of your question.
ANTONIO:I've been looking at different questions that are being asked in census around the world and I've seen that sometimes from you know, one census for the other the question changes.
ANJALI:Yes.
ANTONIO:And suddenly people with disabilities, they just disappear, in relation to the previous census because the question was asked differently. Sometimes the question is some ambiguous that people don't really know, am I, am I not. You have that dilemma. And on the other, like you were saying, you were talking about the story of giving a glass of water to a family member, is that sometimes census documents are being filled in by other people, not directly by the person with disability. So people might end up hiding a familiar member.
ANJALI:Imagine if you have hidden disabilities, it's all the more compounding you know. It's actually something that people feel shame for. I can see that shift in the mindset. Yes. But I think you have you know a walk a path to walk to get there still. But, yes, especially when we talk about the percentage of women with disabilities and other communities as well. Not just women but even our trans community for that matter. We need to have the disability data. You know gender-based type of disability etc. I feel so, yes.
DEBRA:And also, I know that I am being naïve, but I'm I don't know, I guess I'm looking for a time when we do not decide that people get, that they are born with disabilities or they acquire disabilities, because karma or because religious beliefs or other ridiculous things because, even if, in another life, I stole horses and so, I was a horse thief, what? It doesn't even, come on, I need to be responsible for this lifetime and then we have karma and that kind of stuff and then in some of the African countries, you know, some of the witch doctors. It's just really, really chilling. The stuff that people have to deal with, just because they are normal human beings that might have MS. And they are normal human beings that might have a blood clot disorder like my daughter, Sarah. That has done, it has really, really hurt her body, a lot. Her down syndrome was nothing down to this blood clot disorder what it's done to her. So I just, I know it's more than having empathy. But there are so many problems associated with disability inclusion. And us even being accepted in society, it's just sometimes it just feels like it's too big to wrap your head around. So I guess I'm very grateful for leaders like you, that are saying well, I am doing it, I don't care if you all like it we are going to do it. We are going to talk about it. And that's another thing about doing Axschat. We have been doing this for ten years. And at first we are were really good about sticking to the word accessibility and then we realised that word accessibility is so big and this is really about -- we had a guest on a couple of weeks ago Tomas Babinski, and he said, I'm not going to use the word accessibility anymore, I'm using the word inclusion because it really is -- I mean, you know, it's a tough diagnosis, MS. And it's a scary diagnosis because we don't know what is going to come in the future. That's -- and that's for, for society on top of it treat you that you do not matter and you're less than human. It hurts us so much. Which is another reason why we have to get to together. Which is what we are doing here. I just wanted to state that. I really appreciate it. I've talked it before, and Antonio triggered is, I know there was a census that was being done years ago in Panama but it's probably ten or 15 years ago. And as we were going into the countryside, families that had members with disabilities were heading them because they thought the government was going to take them away or hurt them or hurt the family. And so they hid them so the government workers could not see and so, and often people with disabilities, especially people like my daughter with Down Syndrome or intellectual disabilities, they are hidden at home and they're an embarrassment to the family and not allowed out. I am going to get on my soap box, no, I'm not. So I know here in the United States, I'm always talking with me fellow Americans. It's like, you all don't understand it's bad here. But you leave our borders and it gets really bad from our community. That's why we are stronger together. But I just really appreciate your work, Anjali, I really do you mind talking a little bit about the fellowship you had?
ANJALI:Yes, sure. The fellowship was announced by this organisation called the National Centre of Promotion of Employment of disabled people. It's one of the leading organisations here in India, based in New Delhi, the capital. And it invited people, young people or young adults, people with disability, young with people with disabilities, to actually make the New next Gen leaders in the disability sector. And around 25 people or 25 young leaders in disability sector, were selected in this fellowship and I was fortunate and I was really surprised I was selected and was one of the fellows. And different fellows living with different kind of disabilities, worked in different areas. And the area I choose was on invisible disability because of definitely my lived experience that's the reason I choose that aspects. Secondly, is because with the MS Society of India, I have been the part of the National Work Scene project. We have been fighting for the rights of people with Multiple Sclerosis in the area of the assessment of the disability percentage. So you have a catch here. So in India, when we talk about getting a disability certificate or a unique disability ID, in order to even qualify for that, you need to have a proper assessment done. And that has been done by our panel; right? And these panels are made in different government hospitals, here in India. They will make you do certain tasks, you know, get you or make you undergo certain tests and based on again, the results of those tasks and the tasks performed by these people they come up the severity of disability and then of course, this percentage also, is then, in that way, quite instrumental in getting people the provisions under the Act. So in order to away a disability pension that we call in India, right, which I think, if I'm not wrong, in the US you call it a PIP, if I'm not wrong; yes?
DEBRA:Yes, yes.
ANJALI:I think it's part of that. So I was there in the US, last year for a month for the identity programme by the US department of State. So that's when I heard this term. So you avail of a pension for that matter, financial support with the government. You need to qualify save for that matter 80% of disability, only then you're entitled to a certain amount, rights. So for people with MS in India, it was very tough to get that assessment done. Because as soon as I walk into the hospital, sit in front of the panel, the first question they will ask is what is your problem? You're normal. You're fine. You don't look disabled. You don't need that right. So this happens in various parts of our country. To me it did not happen because then I was quite vocal and I also actually sort of intimidated those people when I entered the hospital. I said here; listen, I know my rights. You cannot send me away, unless you get my assessment done. And if the doctors say that I have say 20% disability, I will go away. But you need to first at least get me assessed. You can't just send me away because I look nondisabled. Right? So that's one challenge. Most people with disability and with MS, it's very, very prevalent. And we have been working in this area and that is what you know inspired me work in this specific area of employment. Because then once you get, you only in order to sort of prove your disability sadly you need to show them a card. I mean that's something that is everywhere. And in order to get that card, it's a challenge. So I thought that you know maybe while my organisation, MS Society of India is working in the very assessment of these guidelines, to get people assessed for the percentage of disability, I can you know parallelly work in the area of employment. And through my research, I actually ran a baseline survey which had around 128 participants. It was a Google Form survey and I also conducted a few interviews, 10 to 12 interview, telephonic interviews, with people with Multiple Sclerosis and a few of the blood disorders in the community. And in that interview I definitely asked them questions about what challenges do they in regular day to day life and in employment, what sort of effects their working at the workplace. Do they know what reasonable accommodation means? Because even a section on reasonable accommodation, having equal opportunity policy in every organisation is a must and that's in our law. And I was shocked to know that 80% of my respondents said that they don't even know that the thing called equal opportunity policy exists. Or that if matters, there's a thing called reasonable accommodation. Then I realised that okay, we keep on complaining that people don't know about it. But then even the disability community here were unaware of their rights. We can bridge that gap together. So it's important that we, you know while doing the sensitization awareness programme and what not of the corporates, with the private sector companies, here in India, it's important that we also educate their people on their own rights. Right, there were many other, you know highlights that actually shocked me. Shook me, sorry. Where I came to know that even corporate issues were one of the challenges as to why people didn't disclose that you are disability at the company workplace. Most of these people fear disclosing and I know that some of my people in my community also the term disclosed, because the term disclosed is in a way sort of you know an exclusion factor after this we need to set it down. But then, yes --
NEIL:I agree. So
DEBRA:I agree too.
NEIL:A great friend of our show, Kate Nash, wrote a book about disclosure which was called,"Secrets and Big News," and you know, they were talking about self ID, rather than disclosure because disclosure is usually when you are telling about something that you have done is bad.
ANJALI:Yes.
NEIL:And so there is a negative connation. And so I understand why the disability community quite often doesn't like the term disclosure.
ANJALI:You know, I personally feel, personally there is so much out there we don't even know what is right and wrong.
DEBRA:I know, I know.
ANJALI:Frankly, I am still learning, I get so scared when I have to talk to the LGBTQ community sometimes it's so tough. I am constantly you know wondering in my head, did I say something wrong and it goes for even for the disability community for that matter.
NEIL:Sure it does but I think that you know actions speak louder than words and certainly working in an international context, whichever we say will upset someone, which is the cultural differences between people in different countries, mean that what is seen positively in one country is determined to be negative in another. So I am forever walking through that minefield. But I was really interested, you know, in what you're talking about in a sort of the whole classification and gatekeeping piece, which was, it's a big issue, people getting access to the assessments because that unlocks the benefits and everything else and if we look at the Indian government statistics, only 2.1% of the population is classified as disabled, which is minuscule. So, that comes down to what is classified as a disability. Some of it then is down to the fact that people don't know that they need to get these declarations et cetera, and then there is also the fear that you just mentioned as well. So people don't do it because they think I would rather hide it and not prejudice my chances of getting a job or staying in employment. So we had to do work on multiple fronts. How do you think that you can influence the government on some of this stuff. And Antonio has put in the chat that this doesn't just impact England. This is something that happens in multiple countries. But do you think that with the MS society of India and other OPD's that you can start to influence government to take sort of broader definitions and encourage easier access to diagnosis and classification.
ANJALI:You know, this is very interesting because when I was presenting my baseline study to some of the stalwarts in the sector, I said my basic problem is with the definition of disability, because when we talk about physical impairment all together in the definition it limits the participation and inclusion of people with other disabilities. So I was told by my senior, you will have to challenge UNCRPD. I said I might as well do that because there is a problem, a definite problem because we ratified UNCRPD. But again it depends on the country, how they want to take the definition of disability. At least, In the US, we do not have an exhaustive list of disabilities to follow. Even Long COVID to my surprise was considered a disability. So I personally feel that influencing the government it's important that every stakeholder is actually included in the conversation than the decision-making process. Sadly, you know for the past many years I didn't see that. But now as I said things are improving and I witnessed you know people being the part of the actual committees in the government organisations where decisions on even legislative accessibility or inclusion for that matter, in general are taken into consideration. People affected by disabilities and not just living with disabilities are taken into these discussions; right? There are many organisation, especially in India, leading NGOs, that are you know having consultations early. And some of these organisations are actually doing a fantastic job. The organisation of which I am the part, under the fellowship programme they hold these early connotations. And in these early consultations they invite even the government officials to be a part of it. So that they get to hear what the disability community at large wants; right. So I feel that having the last member in the family in the discussion is through inclusion and that's when you can actually make that change. Because even people with disabilities can have a biased opinion; right. Because when I started my fellowship and research, I had a different reason as to why I was doing that. But the end of my research I said okay, I have been complaining all the why but my own friends do not know that they have rights. So it's important that all these people are made to sit in a circle together, have these opinions placed on a piece of paper and not just on the piece of paper but you know regular conversations. Every time, I am invited for any you know significant celebration or a day that signifies, let's just say celebrates MS for that matter on 30th of May. Whenever I'm invited on a talk on that. I always tell them, you know, listen I'm available throughout the year, you can call me anytime to talk about MS, so why not only on the 30th of May. So conversations on disabilities, need to happen every now and then. Only then I think it will be true inclusion, not just on 3rd December and of course you need to value their labels and terms. So don't just call us. In fact, it's important that you can also invite people who are the caregivers to these people with disability. I think that there they are the greatest worriers of all times. They will have their own recommendations to provide to the government. Right, if I cannot help a person with a disability any impairment opportunity, let's just say a person is totally bedridden because of the severity of disability. Can't I help the next family member caregiver to find a good job to at least have enough money to make both ends meet, right. And actually I want to work in this project as well which applying to work on with the MS India, which also work on empowering and financially uplifting the caregivers.
NEIL:Yes.
ANJALI:So we can take care of our people with disabilities as well, if a person with disability is not in a condition to you know, work. So it's important that you see every segment of our society with that lens. That's what I think inclusion means.
NEIL:We definitely need to take a whole eco system view of this, to be able to understand, you know. You don't just support the individuals; you support the support networks. And you create something that works for the whole of society. A lot of the time we try and look at an individual issue and don't understand the connectivity and everything else at systemic level. It's been a great conversation. So good that we have run a little over. So I do need this thank our friends and sponsors, Amazon and My Cleartext, for keeping us online and captioned and look forward to us continuing this conversation when we take it to social media. So thank you so much.
ANJALI:Thank you, thanks a lot. It was fun.
DEBRA:It was fun.