Dr. Anjlee Agarwal is the co-founder and Executive Director of Samarthyam, an organization that has been working on disability rights, accessibility and gender equality since the early 1990’s and has special consultative status with the United Nations Economic and Social Council (ECOSOC) since 2015. She was diagnosed with limb girdle muscular dystrophy when she was 16 years old. Anjlee is a disability rights advocate, researcher and social entrepreneur, an accessibility, mobility and WASH (Water, Sanitation & Hygiene) specialist, and she works on issues of inclusion of persons with disabilities, especially of girls and women with disabilities, with a particular focus in the area of Disaster Risk Reduction and Management. She was instrumental in creating the ‘Covid 19 Action Collaborative’ to support stakeholders to collaborate, coordinate and integrate Covid-19 response management. Anjlee is a Member of the National Institution for Transforming India (NITI Aayog)-CSO Standing Committee, India. Passionate about gender friendly spaces where mobility is without barriers, she has authored several universal accessibility manuals, guidelines and codes and has also co-authored the National Building Code of India, 2017 for the Bureau of Indian Standards. She is leveraging CSO experience of working in disaster affected areas during emergencies such as Tsunamis, earthquakes, and such, to support people with disabilities, and do access audits during post-disaster reconstruction work.
Shikha Aleya (SA): Anjlee, first a big thank you for taking the time out for us, you’ve been traveling throughout this year and I am so glad we caught this window in between schedules for this conversation! To begin by setting the context, how would you explain accessibility to someone who may not have your personal and professional experience and understanding of the subject?
Anjlee Agarwal (AA): To the layperson’s understanding, accessibility is about reach, but for my understanding, accessibility is about using a building, or exiting a building with safety – or using any space, or object, or facility safely. And the most important thing, when we talk of accessibility, is respect.
So sometimes physical accessibility may be about ramps and toilets, but if you don’t have this component, which is respect – which is welcoming a person with disability – ensuring the person is able to use all the facilities in the system, in the building, in any kind of environment – and this includes, if needed, being able to exit and evacuate safely from that environment – accessibility is not complete.
SA: You are saying that accessibility is more than the physical infrastructure.
AA: Yes. Accessibility begins with behaviour, with the attitude of a person. There are two aspects to this process. One, that you accept that yes, there is diversity in the community and you accept that diversity. Two, is that you welcome a person and treat them with respect and dignity.
So it is not that – you are a wheelchair user so we allow you to come to the building you are most welcome to have a cup of tea with us, but we will lift your wheelchair, with four people, and then you can come inside the building. That is not done, it is not acceptable.
The engagement has to be dignified, it has to be respectful, and then, the physical environment plays its role.
SA: Thank you for stating this so simply and clearly Anjlee. I’d like to ask you, what comes to your mind when you think of connecting these two aspects of life, accessibility and sexuality? Why are these concepts important for each of us to understand in our lives and relationships?
AA: See there are many aspects to this question you’ve asked me. When I look at sexuality, to begin with, for example, when we train women with disabilities, on what is sex, and what is sexuality, the first thing we say is, it’s not just about the biological body, but that, it is our behaviour and being which is a big part of what sexuality is – and much of this is socially constructed, and is about how society and culture influence us.
Marginalized gender identities, including usually, many women, are often the most vulnerable in a community, and it is to that person that we talk of sexuality in our work. So, as an example, if there is a woman with a disability, and a woman without a disability in a family, then the woman with a disability is more vulnerable. So we explain accessibility to them as – the right to choice, the right to live, the right to marry, the right to have children, etc.
This is something that is imbibed in the culture, or in the values of the families, where people think that a woman with a disability cannot get married – or that the woman with disabilities who has got married cannot have children, because she will have children with the same type of disability – which is a myth. So we explain things in very simple language. We say that you have the right to choose, and that the first thing is whether you want to get married or not, or whether you want to get higher education or not, whether you want to wear a red coloured outfit or not! The family or the community cannot decide that you should not look beautiful. Or that you cannot wear a bindi. Or that you cannot wear a saree. Or you cannot wear a red, or an orange or a bright colour. Usually – the girls that we speak to, or the women with disabilities, that is what they say – if we wear bright colours the family will say ‘people will look at you and they will think that you are available’, and that, ‘it is very easy to flirt with you’, ‘it is very easy to exploit you’, or ‘it is very easy to have a relationship with you’.
So then we ask: ‘Is it wrong to have a relationship?’ They say, ‘yes, it is wrong, because we have been taught that you can love your father and your brother but you cannot love anyone outside the family’.
There are many things that come with the understanding of what can and cannot be done. So, it’s your choice. If you want to get married and you want to have children, nobody can say ‘no’ to you.
Now, when we talk about physical accessibility, the same thing happens. It is the girl with disability, or a gender-diverse person, who gets left out. The boys are also left out, but the boys at least have the choice of loitering outside, or sitting at the nukkad, or eating paan and flirting with people. The moment it comes to a woman with disability, you are completely confined to the home. In practice, no rights – no right to education, no right to higher education even if primary education is given, then no right to employment, no right to married life, no right to reproductive health, or to have an out-of-marriage relationship, or to go to a place of worship, or for travel and tourism – and above all, no right to property – or to the bank balance that you have! So whatever bank balance the women have, they pass it on to the men in the family, or the boys, and the girls or women with disability – they will be obliged throughout their life to keep begging, from the other family members.
So we take a whole life-cycle approach to sexullity and accessibility – and accessibility is a gamut of things – respect, dignity, choice, empowerment, education – everything must fall into place.
SA: You have spoken in the context of familiar life experiences for many people – so one can see where the gaps are visible. On to the next question. In 2020, you created the Covid-19 Action Collaborative of Organisations of People with Disabilities and the Government. Please share experiences and insights related to this.
AA: Shikha, this is dear to my heart – there are many lockdown episodes that happened. The first thing I want to speak about is of the day the lockdown was announced. My mother and I, both of us are bed-ridden. I am bed-ridden because of my disability and she was bed-ridden because of surgery at the time, and her age.
All of a sudden lockdown was announced and we were deprived of our carers. I have a 24 hour carer who helps me do everything, even to turn from one side to another in the night, and for my activities of daily living, like bathing, eating and everything. My mom was dependent for cooking, household chores, for her medicines, checking temperature and many other things. Now when this was announced, my mom and I were shocked. Lockdown for others means not going out, and for us it was about reaching out, because we needed help, physical help as well. There is no way I can get up and even go to the loo – I can’t piss in the bed! The same is the situation with my mom.
So immediately, I started calling up people, to ask, what can be done so I can have my carer come home? And I said that I need just one person who can take care of both of us. The answer I received from everywhere was “No. Lockdown is like an emergency, and there will be complete lockdown of services, facilities and human resources”.
I took some time to understand how to deal with this. The first thing I did was to start talking to police personnel. I spoke to the SHO of the nearest police station, since they know us – and they know that we have an NGO and that we are working towards disability and accessibility and we look after the needs of senior citizens also. But he said, “Ma’am the only thing I can think of right now is just get a curfew pass”. He suggested that I send somebody to another police station, at some distance, where they were issuing curfew passes.
So I asked my carer to go with her husband to the police station – and I sent one of my colleagues along with them, but, these people were stopped by police on the way who refused to let them travel. My colleague explained the situation at length – that he is working at Samarthyam and Samrthyam is a member of Niti Aayog and Dr. Anjlee Agarwal is a person with severe disability and so on. They were finally allowed to carry on. At the police station for the curfew pass, my colleague stood in a big line. There were many people who were there to get passes to sell bread and anda and sabzi and doodh, and things like that.
Finally when he could make it to that person who was issuing passes, he was asked – “ Aap kya bechte ho? Anda bechte ho? Doodh bechte ho? Sabzi bechte ho?” (What do you sell? Do you sell eggs? Do you sell milk? Do you sell vegetables?)
My colleague said – “Main kuch nahin bechta (I don’t sell anything), I come from an NGO and I want a curfew pass for my boss.”
The answer was – “No, it won’t be done.”
So my colleague got really upset about it and said “Agar hum anda aur doodh bechte, toh aap allow karoge (if I sold eggs and milk you’d allow me), but for somebody who really needs it, or the person will die in their bed, what is the option?!”
My colleague called me and said that they weren’t listening to him.
Then I spoke to that person at the police station and explained everything. He took six or seven minutes to understand it all – and in the end he said “No”.
Then I got really furious. I said, if this is happening to me, a person like me, who has power, who has a voice, who has connections, what is happening in the world? What is happening to people in the villages? To people with severe disabilities? To senior citizens who want a person to come and give them a catheter? A person to come and give them vaccines – not for COVID – other vaccines, medication – what is happening to them? If somebody needs an oxygen cylinder to be changed? We have two brothers near my place who have muscular dystrophy, and they need oxygen cylinders every week, because they are on oxygen. What happens to them?
I called up an acquaintance who is at the Secretary level in the government. I told her – we don’t want to die of COVID, but we don’t want to die in bed either. She said that she would speak to the official at the police station for my curfew pass and that I should send my colleague again. I said, no, I would not send my colleague again and that I don’t want another disrespectful ‘no’ from them. I said, they don’t understand that it is not about anda and chai any more, it is about a life. And a life like mine – there are millions of people in India who are bedridden, or who have severe disability, at home, waiting for their carers, or volunteers to come and help them. So I don’t want a one-to-one understanding on this, I want a policy change! If the lockdown is happening now or if a lockdown happens in future, we should have a pass which is available. So, this is when she said I needed to write an email to her officially and also email other people I know about this.
So I started with her, then the Prime Minister’s Office, the Ministry of Social Justice and Empowerment, the Delhi Government – everybody. I went to the website and found that in Delhi there was a Janta Samvad where they were giving e-passes for sending materials and provisions. Over there I wrote that we want e-passes for our caregivers. This was taken up in a big way but I had to run from post to pillar. I had created a WhatsApp group of over 300 people, which included the higher officials of all the ministries, specially from the Ministry of Social Justice and Empowerment, the State Commissioners from 27 states, and many people from big Civil Society Organisations. My office was running during lockdown – you won’t imagine how – we were four of us working from our homes, on WhatsApp, on Social Media, on desktops, on laptops – and I worked 24×7, for seven days. To pull things together.
This was something new for everybody. Nobody had thought about it. So I’m not blaming anyone, but the thing is, in an emergency like this, people with disabilities are the ones that are always forgotten – and here, people with severe disabilities were forgotten. It was discrimination.
So this became history because then e-passes were created not only in Delhi but throughout the country. All you had to do was go online or WhatsApp.
You won’t believe this Shikha, I got calls from senior citizens, from people with disabilities and medical conditions, who had undergone surgery, or who were in hospitals, I got a call from a very small village in Manipur, where seven of a family with disabilities were left out on a hilltop. They were without food for almost a month before they got help. I got tweets from people. And we reached out to them through the state commissioners, and food supplies and medicines, sanitary napkins, oxygen cylinders, groceries, clothes – so many things were given in those three months.
There is one story I really want to highlight. In a slum area of Delhi, 30 women started using sanitary napkins which they washed at home, and these women caught an infection. It was so bad we had to call for emergency doctors from AIIMS, and they came to a school nearby, lady doctors in their their PPE kits and all, and the 13 women went there for treatment. All of them had disabilities. Later, they got back to me, and they said “Jo aapne humare liye kaam kiya hai, woh koi nahin kar sakta” (Nobody else could have done what you did for us).
And then I realized the power of social media and the power of being vocal, and to get yourself heard. Because otherwise, there are many of us who would have died in those months.
SA: These are stories that build a powerful narrative that is still only part of a larger one that is still unknown. So thank you. A last question Anjlee, please share some of your own life story and learning moments with us.
AA: To begin with, I have muscular dystrophy. Two of my siblings also have muscular dystrophy, my elder sister and my younger brother. My elder sister felt very strongly about me and did not want me to have a disability. I am talking about 30 years ago, when we didn’t have any idea of the prognosis for muscular dystrophy.
My sister was an NCC cadet when she started using a wheelchair. So I was made to learn Bharatnatyam, because she wanted me to be active. She didn’t want me to have to use a wheelchair at any point in time. So I learnt Bharatnatyam. I was a Throwball player. I was also an athlete. I was the best student in college. See – I have seen the best of all these worlds.
I was in college when dystrophy struck me, it happens in the late teens usually. It was very difficult to climb the steps of the college building, to go for my practicals and classes. I was a science student. Ultimately I decided it’s not working out for me, so after my course was over, I started earning on my own. I started a boutique. I was in a male-dominated world for almost fifteen years. I was one of the youngest in the field, an 18 year old entrepreneur, setting up exhibitions all over the country, traveling with a lot of the men who were also exhibiting products. My boutique was different – I used to get handloom and handicraft products made by local artisans from the interiors of Madhya Pradesh and Gujarat. I experienced a male-dominated business world. That was something.
Since I already had dystrophy, starting from the lower limbs and progressing to the upper limbs, I was finding it difficult to travel. At that time I could walk with a stick. But I realized that at some point in time I would be using a wheelchair. So I said, how will I work then? How will my boutique run? How will I submit my stuff if I am totally wheelchair dependent?
I spoke to my sister and she suggested we find some kind of an NGO – we were totally new, we had no understanding of what an NGO would do. There was no internet facility at that time, so we started calling up people by referring to directories like Just Dial and stuff. We contacted an NGO near our home. This person here said he could give us wheelchairs. I said, “No, we don’t require wheelchairs, a wheelchair we can always buy, we want to know how we can travel in the wheelchair.” He said, “No, the roads in Delhi are very bad you cannot travel in a wheelchair, you cannot go around.”
That was when I realized accessibility is very important and it is not about buying or distributing wheelchairs, but about making roads accessible, for wheelchair users. That was a complete mind shift for me, from designing clothes to designing environments, roads, buildings and spaces. I was determined – I wanted to go see the world, before I got into the bed.
So we started, my sister and me, and we caught a friend who said, “I’m very fond of travel, so let’s see what we can do.” The three of us started traveling. Then other people said – how do you all travel, we want to join your team. So we said okay, and then we started going further, towards the South as well.
This became a team of travellers with disability, and somehow, UN ESCAP (United Nations Economic and Social Commission for Asia and the Pacific) came to know about us. They heard that there is a team or persons with disabilities in India which is traveling throughout the country by road, by train and by air – and they are having great fun!
So UN ESCAP invited the three of us to Bali, Indonesia. And my sister couldn’t go. But my friend and I went! This was in 2000. During that time, ESCAP was working on a plan of action for sustainable tourism development in the Asian and Pacific region.
This was the first time I went abroad. We received training in accessible tourism, what the tourism packages should include, how the sites should be managed, how the transportation system should be made accessible. I remembered that as a traveller I used to see how things should be made accessible – but here we found real solutions. How to do an audit, how to make the systems accessible, how to measure and monitor, how you use your observations to find solutions – and how to have a National Accessibility Law in the country, which at that time we did not have in India.
So, also, we had started Samarthyam when we were doing our travels in India, but officially we got registered in 2001. Then we started talking to the Government of India. At that time we only had one law, which was the Persons with Disabilities Act 1995, but we found there was nothing about accessibility or universal design in it.
So looking at non-discrimination is something different you know. You can say – oh you are most welcome you can come to my building, and there will be four people who will be lifting you up. Accessibility says – no lifting, there should be lifts provided.
We started working with the Government of India to change the law, to integrate accessibility into the policies for buses, for trains, for roads, for footpaths. And then I joined the Indian Roads Congress. I was the only non-engineering member, a woman. I said I want to write a code on Guidelines for pedestrian facilities.
The convenor said, “You are a non-engineering person, how will you write this?”
I said, “I am a user and I know what is best for us.”
He said, “I never see anybody with a disability out on the road.”
I said, “You’ve answered the question. Because roads are not designed for them, that’s why you don’t see them.”
He was taken aback and he said, “You are the only person who can write this so go ahead!”
This is called IRC 103, 2012, Guidelines for Pedestrian Facilities. It was my first push into a technical subject, where I now know the complete Guideline.
From there on there was no looking back, with the National Building Code, National Urban Transport Policy, guidelines for schools, for sports arenas, hospitals, and many more.
Samarthyam started doing accessibility audits, we started looking at the codes and manuals, and our journey towards inclusion and accessibility continues.
We cannot make anything completely accessible because needs are diverse, every person is different. But we can manage almost 80% to 90% accessibility. One, by changing our mindsets – when we say “Nazar nahin, nazariye ko badalne ki zaroorat hai” (It is not the gaze but the perspective that needs to change.) Two, by setting up standards and retrofitting them into place. It’s not about new spaces and new buildings – it’s also about the old spaces. If we assure 80% to 90% accessibility, we will have achieved a lot.
What I’m trying to tell you Shikha is that accessibility is about the physical environment, it is also about the transport system, it is about information and communication – and – it is about the mindset! So with these four pieces together, we can achieve accessibility for all.