Cultural Taboo and Organ Donation
Growing up in a South Asian household, health was of great importance.
You were always told to drink your milk for strong bones and finish your vegetable curry (not boring old veggies, but a heart warming vegetable curry). Coming from a Muslim background, I was taught that you must respect your body and stay away from all things that could harm your body such as drinking alcohol, smoking cigarettes, or taking drugs. So being healthy and respecting your body was at the forefront of my values. In most South Asian cultures (yes we have many sub-cultures within South Asia), being young and ill is considered a tragedy, one where you cannot escape the judgement or pity of family members. Of course, it is not all South Asian cultures or people, who hold this view, but certainly my family did.
In South Asian culture, youth symbolizes strength, power and courage. In contrast, old age is a reminder of illness and a lack of strength.
So, when someone young does fall ill, it is a shock to the system, as diseases or illnesses are mainly associated with elderly people. Such a shift in the paradigm disrupts the cultural equilibrium and that made me realize there is some social taboo in regards to youth and chronic illness.
The topic of organ donation was virtually non existent in my culture. Every time I would raise the topic, my parents would automatically say organ donation is not allowed in our religion. When I would ask why? They would stutter and tell me they did not know the reasons why it was not allowed in our religion or culture, but it was something that they themselves were taught from a young age.
So I grew up, socialized with the ideal that I was not allowed to be an organ donor (due to religious reasons). This view remained dominant among my family and myself until I was diagnosed with organ failure. Once diagnosed with my illness, I began to carry out research on the topic of organ donation and I found out most mainstream religions (Islam, Hinduism, Sikhism, Christianity, Judaism and Buddhism) encourage organ donation.
So the question remains, why were most South Asian people refusing to be organ donors? Why isn't there enough awareness on the topic, especially among ethnic minority individuals? The answer to these questions lie with cultural values. Not enough cultures are taught the importance of organ donation, hence their attitude towards the topic is lacking compassion and love. Therefore, I consider it to be my duty to educate my community; not just the South Asian community, but all ethnic minority individuals on the importance of organ donation.
My blog and Instagram tries to educate people on the importance of organ donation, and highlights the daily struggles of someone living with a chronic illness (organ failure).
I am proud to finally 'get loud' on the topic and break the social taboo. We need more organ donation advocates who will target many cultural and ethnic groups and raise awareness around organ donation, and I am glad to know I am making a difference in this world.
I'm proud to say, I have encouraged all my family and friends to join the deceased organ donation register (something they would not have done, had I not educated them on the topic) and I hope through my continuous efforts, I will encourage more people to become donors.
Submitted by:
Jannath
She is currently on dialysis and actively searching for a living kidney donor.
