Breaking down taboos associated with cancer among South Asian communities

Nagina Kaleem

I’ve lived in the UK for more than a decade, having moved to Southampton from Pakistan with my husband. I’m a science teacher and my husband and I founded an educational charity in Pakistan to uplift marginalised Asian girls and women.

Understanding that education is the key to breaking cycles of poverty, we established seven schools in slums and brick-kiln factories, four sewing centres for young women who had missed formal schooling and a school for physically disabled children. When we left Pakistan, most of our projects closed, but we have been able to re-establish three of them

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Two years after moving to the UK, I was diagnosed with cancer. After gruelling treatment and many side effects I was not fit for work, so I started volunteering with different organisations. During that time I realised immigrants face so many barriers to integrating into society. So with the help of Jane Walker from the Purple Community Fund we established a sewing centre, a women-only space where they could come to learn new skills and understand the culture of their host country in a supportive environment. Now I have registered Cross-Culture Hub CIC, where we help immigrants better integrate into society.

When I had cancer I faced a lot of rejection and avoidance by the members of my South Asian community. I was considered a big sinner in my past life and was told to repent for those sins. Some people thought cancer was a curse on me. Some friends stopped visiting us because they thought cancer was a spreadable disease.

In South Asian communities women often have very limited exposure to wider society and are expected to stay in their homes, raise children and support their families. As a result, they get little chance to mix with other communities. Also, there are religious and cultural taboos associated with diseases like cancer. This is why it’s hard to explain that cancer is a disease like any other and in most cases it’s curable.

I faced quite a lot of challenges in the beginning and it is still hard to change these deep-rooted beliefs. That’s why, alongside my awareness work, I organise talks on other health issues like diabetes, personal health care, dementia and more, to help people better understand the message.

It isn’t always easy to engage with my community because people don’t want to associate with cancer-related talks, sessions or workshops and they won’t come to a session in response to an open invitation. Instead, I tend to reach out to people I know and ask them to help me with small tasks to run the sessions.

We invite professional speakers to address questions and concerns, and we also encourage cancer survivors to share their stories and how they overcame their challenges and fears. This inspires others and helps break the silence. Most importantly, I share my own story, which helps people feel safe to step out of their cultural and psychological limitations. I’ve also been fortunate to have my story covered by local magazines and newspapers and on regional and national TV, which helped get the message out there.

I feel a sense of success in raising awareness. My sessions are no longer limited to just South Asian participants – I now have a diverse group of attendees from all communities. People have started to engage in open discussions and are gradually overcoming the fear and stigma around cancer.

I feel very proud to be recognised as a Community Legend in the recent City Reflections project. Being a Community Legend isn’t just a personal honour; it has also increased people’s trust and confidence in my work, among both the community and the organisations I collaborate with.

This year I’m planning to work with more local organisations to host multilingual workshops and health talks. I also want to focus more on women’s health by creating safe spaces where women, especially from South Asian and other underrepresented communities, can talk openly about their health, ask questions and get support without fear or judgment.

I am extremely passionate about my work but I can’t do it alone. Cancer treatment has had a significant impact on my health, so I always need professional volunteers to work with me. Cross-Culture Hub is a Community Interest Company and everyone is welcome to join. I am currently looking for grant writers because this is not a core skill for me and English is my second language. We’re also grateful to anyone who supports us through donations or sponsors our events.

Watch Nagina’s Community Legend Video