The Last Menstruators Episode 1 - "Disability & Menstruation in South Asia"

Welcome to this panel of disability in menstruation, two areas that are lacking in discussion and in action. We've come together to discuss challenges and barriers that we have faced as disabled women and activists. And what is the way forward.

I'd like to introduce this activist who's also an entrepreneur and who dared to connect Sexual and Reproductive Health Rights (SRHR) with entrepreneurship. Saba Khalid, who is the founder of Aurat Raaj and Raaji, now Raaji is a chatbot that talks about menstrual health care with young women.

Thank you, everyone who joined, I wanted to sum up that this particular conversation is part of a larger conversation that we're having about the lack of representation of menstrual experiences. This would really help gather momentum on the conversations that have never been had before, especially around our region.

Hi everyone. I'm a disability rights advocate based in Columbo, Sri Lanka. I'm a visiting lecturer at the University of Kelaniya and the University of Colombo, and they both have Disability Studies Departments.

So I'm affliated with those disability studies department. But I also do quite a bit of work with youth with disabilities, as well as parents of children with disabilities.

In schools here we have a white uniform. So , when you're like 12, 13, and you're getting your first period . IF the blood. would be visible through your white uniform. It was a big deal. Oh, how shameful, how embarrassing. Even within an all girls school. So there were taboo surrounding , menstruation, the period being a dirty word despite it being such a vital part of womanhood how even among women and girls, it was treated as a source of shame & stigma.

I'm Munazza Gilani from Pakistan leading the Sight Savers operations in Pakistan, as country director. Sight Savers is an international organization working in the disability sector and also for prevention and control of blindness.

I was hardly 10 years old when this happened. And on that day, I wasn't prepared. I didn't know about it, that this is something that is going to happen because maybe my mother wasn't expecting this will happen at such a young age. And I was closer to my father

As soon as I saw my father, I told him everything from A to Z and then we are four sisters and one brother I'm the eldest one. So everybody was very upset about, especially my mother. And she was yelling at me and she was trying to stop me to be polite it was something a stage of confusion for me that I couldn't handle. But later on, I realized that how important this is to teach a girl and to educate her about all this and to get her prepared for this without shaming and without any hesitation.

So I opened up this discussion with my sisters. I was very open and I share all my learnings and I tried my best to make it a a special event for them

and they should feel proud that now they are getting into another stage of their life.

Hi everyone. My name is Amna Raheel. I work in Unilever as a Donor e-commerce manager. I have muscular dystrophy. So I'm wheel-chair bound. I was told about periods in school when I was in grade six, but when it happened with me for the first time I was in denial.

This cannot happen to me . this is too soon.

I have elder sisters. So I had seen them, but still I thought it cannot happen with me. I felt like upset because I'm already on a wheelchair.

That was the first thought that came to me. And now have to prepare for this as well. Life itself was pretty hard. And now, I have to keep this in mind as well. I remember that I cried and cried and cried and then I kind of accepted it.

it's part of being a woman and you just have to deal with it.

My name is Zarghoona and I'm from Baluchistan, Quetta and I have Post-Polio. I have an organization which works for the rights of women with disabilities, and we try to cover some taboo topics.

I remember I was in my village when I just noticed that it happened. And what I tried was to hide it from my cousins , but one of my cousins did notice the stain on my clothes and I was so stupid that I couldn't give any other excuse instead that I told her that.

I sat on a tomato. So it is the state of that tomato.

I would like to turn to Niluka, you had been working in the disability sector for a while you you're working with parents, you're working with other people who are mostly like caregivers.

With disabilities, sometimes we are mostly dependent on other people. How much does access to privacy connect with proper menstrual care? can a disabled person have complete privacy and take care of their hygiene and health?

I think this is a fantastic question especially in a region in South Asia where most of the care, the family is responsible for and usually it's the females in the family who act as carers. So I think if we look at the term or the understanding of privacy, especially in a very Western understanding of privacy, which means, , we have autonomy, personal space, agency

the understanding of privacy has to change a bit. Especially for a lot of us women with disabilities. And those of us who have complex needs getting assistance from your own family members.

Not just in terms of menstruation, from getting dressed, having a shower. To even eating, , having the involvement of others, , day-to-day life is a reality for many of us , depending on your experience

there's no privacy in that sense, strictly speaking and then on top of it is the issue of taboo and stigma, like even if you take disability out of the equation,

EVen in the general population in such a taboo or shameful subject. That that is also then again, really gated to the private sphere.

The other aspect of it, and especially in the Sri Lankan context, is that a lot of women and girls with disabilities, are institutionalised. So like for in, in HomeStore people with disabilities are home so often send children so when you look at institutional living in such facilities, then.

Privacy becomes a totally different thing. Because you have a very public life. And , you share your space with other people who share your bathroom facilities. Often they are co-ed spaces. So there are both men and women where you get like segregated arrangements as well. .

So psychosocial disabilities to be subjected to sterilization or other forms of. Menstrual streamed month often without the consent. And again, when it comes to decision making about our own bodies, when it comes to women with disabilities, it's a lot of substitute and decision making. Other people, , family members, carers making that decision or the management of your institution.

I think that that aspect is for me, especially disturbing, but it's seen as something that is necessary for managing life being in an institutional structure. So I think we really do need to problematize this whole concept of privacy meaning in our region. And then what are the implications?

Also reminds me that once I had to use a washroom in a mall that I was unable to close the door, but I have to go to the bathroom. So I remember I sat there peeing and they were like females passing by, privacy was such a big compromise in order to fulfill a very normal need and this entire debate about privacy and having access to any care as a disabled woman is something that we also need. I like to now turn to Zarghoona and you are from Quetta Balochistan and as a Pakistani, I know that it is a very conservative society.

Can you tell us a bit more about the challenges that you have faced being a woman with a disability in that area?

It's not an easy task to stand for your rights in the most conservative area of Pakistan - Baluchistan and talking on a taboo topic like SRHR, becomes even more difficult .

When I was just 22 to 23 years old, I noticed that there was something happening that there was something wrong with my periods.

And I went to a doctor to concern her what actually was wrong with me. So she said that you are having some kind of fibroids. They may not be harmful in a way, but with the passage of time they may grow and it would be difficult for you to conceive if you wanted to make a family.

And then she suddenly asked me that, are you willing to start a family? And my mother was also there. And my answer, obviously it was no, how could I, how could I talk in front of my mother? Her reply on this answer was very rude. She said that if you are not planning to have a family, then why don't you sterilize yourself? Her reply hit me really hard because to me having periods is something like the celebration of womanhood every month. I didn't want it to lose it at any cost. And when I get back home, I was so scared. I was so afraid of getting back to her and consulting her.

And instead of that, I started to search for home remedies so that I could get cured at home. And but that was unfortunately that turned into a very bad thing for me, because with the passage of time, my fibroids grew very large. And I used to have very abnormal kind of bleeding and I used to faint and this went on for about maybe five to seven years.

And at the end of the day, I was taken to a doctor when I had fainted. She said that her fibroids have grown so much that we have to remove her fibroids, but this would definitely damage her uterus so much that you won't be able to conceive.

And she may experienced menopause on a very early age. I do miss my cycles. I do have them after six months after three months and side effects are that I'm gaining weight. I'm sorry, I'm getting very emotional .

I'm so sorry that this has been triggering for you, but I feel like you're very brave to speak about it. And I'm sure this must be very, very hard for you, but I'm also sure about your courage and your bravery, because I've known you for a while, and I know the passion and zeal that you have to empower women in your space.

When I experienced this. I decided that I won't say quite, and it was kind of a turning point also for myself that I used to think that if this could happen to me, that I'm from a very stable family background, that then how would these doctors deal with the girls from the very grassroots level?

I should talk about this. And I have talked about my experience on multiple events and I do have a lot of backlash also. But I think that can't stop me. I just try to change my tone. But I still do talk about my experience so that people could learn from it.

That is the best service that you're doing for women and everybody. So thank you so much for our parish . I like to turn to Munazza over here, and I know I'd say work works for visually impaired in Pakistan. Can you share any anecdotes from your experience how visually impaired people.

Handle their periods. And what is the role of the caregiver and what is exactly the way forward that sight savers is also implementing.

Thank you Tanzila - what I'll be sharing is coming from a development practitioner.

And then relating it with the issues of persons with disabilities. I think we need to understand in depth that women and girls are not a homogeneous group nor are women and girls with specific impairments or age related illnesses a homogeneous group.

They reflect the full diversity of the human race with changing needs as they journey across their whole life course. The challenge is quite tough in case of women and girls with visual impairment, and then they reach puberty as the face, even greater isolation. And I would say more trauma due to the lack of simple information and facilities to manage their menstruation with dignity and this is not available to them in our culture and this culture of silence and stigma associated with their monthly cycles make women more vulnerable to different health problems.

I have witnessed so many women with visual impairment with severe urinary and reproductive tract infections facing stress and anxiety, and even gender-based violence , from their own care givers and from their own family members. And in my personal interaction and experience working with various organizations of persons with disabilities have revealed that the challenges and difficulties they face are so broad and so diverse range of problems especially for those who are reliant on their carers for menstrual hygiene management.

In an recent questionnaire , which comprised of some focus group discussions. And one of the districts where we work, it was revealed that visually impaired women had difficulty in managing their periods independently. Their menstrual hygiene practices were extremely poor.

Almost half of them received support in menstrual hygiene management by their family members. But most of them used some form of very unhygienic indicators to determine even the start and end date of their periods.

We have witnessed that the existing education materials that are available from different wash sector development organization does not include relevant aspects for women and girls with different disabilities, or does not cater for different learning requirements in that sector.

Most of the guiding information are often not available in accessible formats, especially for blind and visually impaired women. And the languages for poor people and those who cannot read and write .

Educational American is not available in any audio format or any braille format illustrations that are accessible to visually impaired persons all these elements needs to be incorporated in a way that they are understandable. They are accessible and also acceptable in our as part of our cultural norms and family value.

Yes, very well put that the disability NGOs and development organizations and the entire development sector has not really explored the area of menstruation. Even the organizations working on SRHR tend to leave out of menstruation . SO let's explore a bit about the corporate sector.

So speaking about the corporate sector, tell us more about your experience about handling periods during the work day and what changes can we make at the workplace for women with disabilities who have to manage their periods?

Even like workplaces, they don't have large enough bathrooms . And when I get my periods, I need help, normally also I need assistance in the bathroom.

One person has to be with me. But when I'm on my period, I need two people to help me because one person picks me up and the other person has to pull my panties up. obviously in these work places, the bathrooms aren't big enough. They don't have that culture because normally a person would go in and they would just change their pads and they will just come out.

But for me, it was very different, and since my periods are not very regular , I would just wear a pad two-three days in advance , they, this was the day I minded them.

No one would be able to help me in the bathroom. So, , I need to be cautious. So I will always, like, pre-plan. At my home also they would be like if you haven't got your period yet. So why are you wearing a pad?

It will be so uncomfortable for you. At work also, I would be careful that I wouldn't drink a lot of water so that I wouldn't have to go to the bathroom because then who would change my pad and who would help me? And the n when you pull down your pants.

So there are chances of staining the place and the pads leak. So for me, it was like a constant struggle and that's something that I deal with today also, because I'm still cautious. I still have to preplan and obviously if one person is with me and I need another person to help me, I would take help of the office staff, the bathroom janitor or someone would help me.

And they wouldn't be as comfortable with it as my own caretaker would be and so they would make faces, they wouldn't want to help, and it just was a constant struggle all the time. Remarkably, that has never stopped you from going ahead. You come to the job. And I've only heard good things about you.

Amna is quite a star in the corporate industry. But the company , or the CEO would never really understand how much goes behind the scenes to make sure that that the job happens.

Yeah, definitely. Because when I joined, I really had to explain it to them. And I had to tell them my wheelchair even when it doesn't fit in the bathroom. It was a struggle for me. I have to think twice before going inside and I need help, so I need someone to assist me and it's just something that you have to figure out and not let it stop you.

There have been days when I'm sitting on the wheelchair and I can feel that I've stained my pants but then there's nothing I can do about it. But that has also not stopped you from wearing very nice pants. So kudos to your fashion sense and I'll be coming back to you. I like to turn to Nilukka and you have an amazing profile.

You have worked in different sectors. . Civil society likes to make a lot of noise and we see that happening. We have the Women Deliver conference. We have the Population Conference happening. But how much do they make space for women with disabilities who are menstruators or how much is the concept of periods talked about within the civil society?

I'll talk about the Sri Lankan context. So in the recent past, and I would say mainly because of youth activism in the country, the concept of period poverty has emerged in the public sphere, not, not mainstream, but at least there's some discussion.

And one of the outcomes is that last week, the government of Sri Lanka announced that they would give free pads to girls in schools from year 6 onwards, like, especially starting with girls in rural schools. That's a very progressive and radical step four for a government in a conservative country, like Sri Lanka, where we are still the period taboo, the sexuality taboo is there.

But then when we look at women and girls with disabilities, like across the board access to education, especially six onwards for women and girls with disabilities is very low . So then, this is a great mechanism to address period poverty and, and get like better menstrual hygiene.

The other thing was during COVID-19 . Like in many South Asian countries, even in Sri Lanka, the civil society is very active when it comes to disaster response.

So we had the tsunami, we have annual floods and then we had this COVID-19 pandemic. And one of the major things that we realized. Even for, , women and girls without disabilities, was that when aid was providing us, no one was thinking about sanitary napkins. So you spoke about civil society organizations, and I also want to like acknowledge the role played by INGOs.

So UNFPA & UNDP and other agencies also recognizing that , COVID response or assistance should also entail menstrual you know, help and sexual health. So in addition to pads, even like condoms, even contraceptive pills, , the basic things where we're not seen as basic or essential, but I think over the past year our organizations being exposed to this barrier has resulted in some civil society organizations going, no, we need to get these products and these services to women and girls with disabilities.

At the local grassroots level, we still have a long way to go.

There are young women leaders who are emerging, and I think about among young people there is a greater willingness to talk about sexuality.

So sexuality is coming into the fore and also like in the corporate sector disability is kind of being recognized. Disability, sexuality to a certain extent is being recognized. Even by media corporations. If we can strengthen those cross moment collaborations, with the women's movement, with the sexual reproductive health rights movements.

Rather than looking at disability as a separate issue, but , instead of that, to look at it as an intersection or cross cutting issue, I think we can really go forward in a meaningful way

I think every time I have spoken to anybody from Sri Lanka, I think the discussions are very progressive.

So you could tell with the conversation that, , everybody's moving in the right direction and with this I'd like to come to Zarghoona, you've shared a very personal experience and I'm sure that there are other women out there who are going through something similar. What small changes do you think that authority structures people who are in power can make to facilitate women with disabilities in terms of periods in SRHR?

Well Tanzila when we talk about disability. the disabled community always try to ask for inclusion instead of asking for something very special for us. We try to mainstream disability in everyday life. So I had an event on making health facilities, accessible and inclusive for women with disabilities.

I try to cooperate with people from the policymaking. So what I try to make them understand was that the current initiatives that they're working on can be made accessible and inclusive and reachable for women with disabilities. Hiring female staff so that the women with disabilities from the very grassroots level can reach them and can have conversations with them regarding their very common health irproblems.

These kind of initiatives can bring a very large change.

Thank you for sharing that. Munazza Apa, I have known you as the country director of Sight Savers, but I'm sure there's more to it. A lot of fire that you have inside you that you want to do, but maybe there are some barriers that you're facing as a woman in power.

So are there any initiatives on your mind for the visually impaired or for the disabled community about periods?

In my view, the biggest problem in our society, or I would say in the whole South east asia society, is that. We don't talk about it. Unless we break the stigma and the taboo associated with this menstrual hygiene management it won't be solved. Momentum from different donors, governments and other private players needs to be increased to address this problem.

And the focus so far has largely been on hardware the products and the facilities whoever is working in this sector, they are more concerned about different menstrual products and hygiene products and building up toilets and facilities in schools

but we, we need to invest more and more on, on making positive attitudinal changes to happen. And this needs open discussion. In the mainstream society, on, in, on the mainstream electronic and print media and the social media we can talk about on, on the state television, if you can talk about women health during pregnancy, if we can talk about the importance of breastfeeding, then why not monthly periods. It's also a biological process. So unless we don't open up about this this problem is gonna be like this forever. Secondly relating it with my work all the players who are tackling issues related to the menstrual health are working in isolation and in their approaches to reaching girls and their influencers in different ways but they're not talking to each other for, so despite the link between masturbation and reproductive health , the sexual reproductive health sector has paid very limited attention to the issues related to the monthly cycles. Recently, so these different sectors, they need to talk to each other, unless we don't talk to each other and we don't break our isolation boxes and not coordinate with each other, we cannot make our responses more effective and stronger.

Few governments, corporates and NGO sector at looking at menstrual health has a systematic problem. But they're missing the opportunity to address the problems in a sustainable way or at a more larger scale. So I would say that despite the emphasis on sanitation infrastructure, menstrual waste collection and disposal is prioritized because, , it's also a big problem for women to dispose of these products in a safer way because no such facilities are available and they are dependent on others to get it done.

So I have a generic question for everybody over here. We've just gone through this year of critical reevaluating for what is next? The pandemic has really affected us. Corona has really uprooted so many of our own beliefs for disability, the whole fight was about access to public life. And I think Corona has just completely pushed us back to square one.

We did a small study on the impacts of COVID-19 specifically on women and girls with disabilities. And something that came up was deaf women or women with hearing impairments were disproportionately impacted in getting information regarding firstly, what was going on.

But for the hygiene protocols in place also in terms of the mask wearing a lot of deaf women who were lip readers were totally left out of the equation. And the other thing was that a lot of them said that when they go to hospital , they always go with the sign language interpreter, but that option was no longer available to a lot of them.

One woman shared the story about one of her friends who give birth, who was a deaf woman, but the hospital didn't allow the interpreter to come into the delivery room on the basis of hygiene saying that, it's a contamination and the COVID rule says that no one should come in, especially when you're giving birth, imagine being unable to communicate with your healthcare providers.

We have like quarantine centers . But no one talks about accessible quarantine centers. Even when we think about these hygiene measures, and, precautions, we need to ensure very proactively that they remain accessible to everybody.

Amna, I had one question for you that you are working in the corporate area. How much do you think our corporate industry is ready to do a campaign around hygiene, focusing women and periods? Do you think they will be willing to go ahead with a subject like this.

Yes, they would be willing to, things are changing. They're campaigning about such causes. They're bringing in sustainability .Talking about becoming plastic-free - these things that are in the agenda, but I think that everything takes takes time

So I just believe that the right people need to be in the right place at the right time to bring about such change.

I want to do such campaigns for 2021 . Since I handle all the e-commerce campaigns . I want to bring people like you in the limelight, and I want to build campaigns and content around all such issues.

So as long as we have like tigers and tigresses who are willing to go ahead, I'm sure things will change