Shahana Hanif is a Brooklyn born and raised Bangladeshi Muslim activist, writer and community organizer focused on disability justice and diaspora feminism. Shahana currently works for local council member Brad Lander, uses her online presence to reshape our understanding of chronic illness, and champions women’s rights in her local community, having previously focused on housing justice for Asian communities.
Hi Shahana! You’ve written extensively about living with the autoimmune disease lupus, on your blog and elsewhere. Can you talk about how receiving that diagnosis as a young woman shaped you?
It definitely propelled me into more self and community reflection.
I grew up in Kensington, Brooklyn right near Little Pakistan and Little Bangladesh, which are Muslim majority. I grew up learning Arabic and reading the Quran in the local mosques, and that was where I first saw disparities around gender. I saw how men and women are separated and how men get to belong to the mosque as a second home. It was not in my understanding whether this was cultural or religious, I just observed everything.
And then at 17, I got lupus. I’d been normalizing all these separate symptoms over the summer until I ended up in the emergency room. There was no culture of going to see doctors in my family or community, and we didn’t have health insurance. I was told I had to stay in an intensive care unit.
That would have been terrifying, especially as a teenager.
I was bedridden, in a medical institution that I had no idea about. I had no reference point for being hospitalised, and didn’t know any women from my community who were sick. As I stayed there I started to really interrogate where the stories of illness had gone.
I was also seeing a team of specialists and had people coming in and out of the room constantly. I started thinking about consent in a very different way. Because it’s a medical space there’s inherent consent, which means all these doctors touch you because they need to see you, but they never ask.
On top of that I was dating someone at the time and started thinking about desire, and how we care for sick individuals. A lot was on my mind!
And you had the time to think about it all…
Exactly. Once I left the hospital and was allowed to go home, I looked totally different and had very limited mobility. I couldn’t shower or go up the stairs alone and had to depend on walking aids, sometimes a cane or crutches, and my mum. I was homeschooled and barred inside, and my home became a nightmare for me. I was in pain and tired all the time, and didn’t feel courageous enough to go out in public.
A lot of teenagers are insecure as a baseline, so for your body to change and become unrecognisable on top of that would be a lot.
Agreed. I have two sisters and seeing them get to live their lives was hard.
I had several options. I could continue to mope in misery, which I did for a very long time. Or I could shift the way I think about access and privilege and inequity, and pick up. In a way, I had this newfound clarity and just felt so lucky to be alive, which really drove me.
I’ve never felt “normal” since then: lupus is a part of my everyday life. Ten years later, I’ve learned to love and get care for myself. The first few years were tough because I needed regular check ups, blood transfusions, and dose adjustments, and had to have both hips replaced and partial knee surgery. I had to really rely on this capitalist idea of wellness from pharmacies who are banking on different medications.
We look at health and wellness like this: if you are well you are perfect and able bodied, if you’re not, something is wrong with you.
Was it difficult to negotiate all of that without initially having health insurance?
Because I was a pediatric patient I was able to get on Medicaid.
For chronically ill adults, workplace health insurance is difficult. I used to work at a social justice nonprofit where I had to pay $60 for every specialist I visited, which is a lot when you’re chronically ill and earning less than $35,000. Advocacy is important for these issues. The bulk of workers don’t experience chronic illness, but we don’t have preparation or protocol for when it does happen.
I use the hashtag #thesickwait to chronicle how I experience the healthcare system as a chronically ill person, even when I’m in remission or when people can’t tell I’m ill by looking at me.
Can we talk about how being visibly or invisibly ill changes how you experience the world?
We live in a very ableist society. There are standards of beauty around how normal a person looks. Because of chemotherapy I lost all my hair, and because of certain medications my body completely changed. I was 60 pounds (27 kilos) heavier than I am now. For women –especially brown and black women – who are fat, have pockets of fat in undesirable places, or don’t have hair, there’s this whole realm of not being desirable. Not being looked at as beautiful or in line with normative standards of beauty and femininity.
People saw me and read me as sick, whereas now I’m experienced as able bodied.
Your pain is no longer visible.
Now even if I’m experiencing fatigue or aches, people think it’s like what everyone has, not because of lupus. Even people who know I have lupus experience my life differently because I’m high functioning and produce literature on this stuff. Of course I have very empathetic and compassionate family and friends.
I have negotiated with my workplace to work from home sometimes, whereas initially my old work was worried about knowing I was working if I wasn’t in the office. We really think about productivity in a very rigid way that discriminates against chronically ill people.
Are there specific things about disability and chronic illness that you feel are poorly understood in society?
One of the truths of life is that we all get sick at some point – even if it’s just the flu – so there is capacity to understand. The trajectory of illness mostly takes place as people are getting older, so I know eventually people will understand what I’m going through.
For me it’s really important to write and shed light about not just experiencing lupus in my body, but experiencing it in school, in college, at work, in medical institutions, and when I’m travelling.
Ten years ago I would never have thought I’d be independently vacationing, but I recently went to Arizona. It was amazing. Growing up in Brooklyn nature is adjacent to apartment buildings, but Arizona was lush. It’s a desert, but things are still flourishing even when they’re not well fed or watered. I saw that as a metaphor for my life! I wasn’t watered the first few years, but I was still growing and learning.
Yes, you are a survivor!
So yeah, when I realised that I passed as “fine” it became important for me to not only be happy about that, but also realise that lots of people are chronically ill but not visibly so.
Is it a relief to navigate the world more anonymously again?
Yes, but I still experience harassment as a brown and Muslim woman. From everyday street harassment, to patriarchy in the Muslim Bangladeshi community, to Islamophobia that impacts my community. So my physical movement is easier, but there are other intersections to navigate.
I’m interested in your experiences as a Muslim woman in New York and whether you think awareness around Islam is changing? I’m thinking about women wearing hijab in Nike campaigns, for example.
Of course I think it’s brilliant to show athletes and fashion spreads with or without hijabs, but despite our rich history Muslims have always been this anomaly in America. It’s sad that we have to celebrate the latest fashion spread to suddenly act like a Muslim woman is achieving something, when we’ve always been here achieving and community building.
You briefly touched on how immersed you are in your Bangladeshi Muslim community in Kensington. I like how you both champion and critique your community and have chosen to reshape it, whereas a lot of young people who grow up in tight communities leave them behind. Can you speak to that?
There’s a lot of intention in looking at the place I was raised and the changes I want to see. There are so many other young women who are staying in the neighbourhood and bringing in new values too.
The other night we held our third annual community Iftar in our local plaza. The first two years there was lower turn out and mostly men, but this year there were so many young girls and women, including five or six of us who read poetry. There was a moment when this neighbourhood aunty who was headed to go pray at the mosque saw me and crossed the street to say hello. She didn’t realise that I was about to read my poetry and perform, so she started talking to me and we hugged.
It was such a beautiful moment for me, realising how much the women in my community value my presence. It didn’t happen overnight, it came from speaking to lots of women and being committed to realising our work. Equity in my community isn’t just something that I want. I live for those moments.
You also recently spent time in Bangladesh. What were you doing there?
When my last living grandparent passed away, I realised how little I knew about my ancestry. My dad has been here since the 1980s, and my family’s life has always been the Bangladeshi Muslim life in Brooklyn. I knew I wanted to continue to support the local community in Brooklyn, so I decided to go there to learn to read and write Bangla. I could already speak it fluently, but I wanted to be able to write my own social justice materials.
I spent seven months connecting with feminists in different sectors, from garment workers, to union staff and educators. Americans hold this idea that developing or “third world” countries aren’t capable of feminist movements, so I wanted to learn the feminist history of Bangladesh and immerse myself.
There’s a rich contemporary movement, except it’s complicated by a surge in political extremism which is complicating things for women, sex workers, and the trans and queer community. In my eyes, they’re just getting more creative and working collaboratively.
That’s so great. I have one more question, which relates to your work in housing justice, which obviously has a lot to do with gentrification.
I’ve recently moved to New York and have been grappling with my position as a contributor to gentrification. I chose to live in Park Slope partly because it’s already heavily gentrified, so there’s less risk of directly pushing a black or immigrant family out of their home. So many people from all over the world move to New York, but do you think you can ethically exist as an outsider?
People come into neighbourhoods without knowing the makeup of that neighbourhood. You need to know what you’re getting into and really invest in living in a space that is not yours yet. You have to understand the socioeconomic context and your place in the neighborhood.
If you’re frequenting community board meetings, side with black and brown communities. Don’t move into longstanding black communities and call the cops as your first protocal. Complain when you see a landlord being predatory to low income tenants.
There have been places, like Williamsburg, where new businesses open up that are not accessible to the people who have lived there for decades. These businesses need to think about who they are serving.
There can be positive things that come with gentrification, like better parks and public spaces. The treacherous part is when landlords use it an opportunity to evict tenants and invite in the new people who can pay more. Gentrification means that landlords stop doing repairs, stop responding to people’s calls, and push people out by making their homes unlivable. They will refuse to treat bed bug issues or demand lump sums of money from immigrants who have a language barrier. When tenants are undocumented and they lose their homes they end up getting deported.
I don’t have a solution. It’s so complex. It’ll never be an easy answer, but there are ways to be ethical. It’s not that nobody wants outsiders to come into New York, people just need to be critical of how they live here.