The recent advice column in the NY Times called “Is it OK to Dump Him Because of His Medical Condition?” has been percolating in our minds for the last few weeks.
Tomorrow, July 2nd, 2020, marks 10 years since I’ve been married to the love of my life, Anand. Yes, you read that right: one whole decade of wedded bliss and 14 years of us being together. (See Love Knows No Disability.) I still vividly remember telling him 3 weeks into us dating that I had been diagnosed with inflammatory bowel disease (IBD) a few short months earlier and that the disease had taken the lives of my father and my aunt along with their aunt. I remember saying, “If you want to leave, please leave now. I don’t know how serious this will get, if at all, but please don’t break my heart and walk out on me 2, 4, 7 years from now if I get seriously ill.” And I can still visualize the look on his face in that moment, one of such utter surprise that I would even think for a second he would leave me because of a disease.
Even though my IBD diagnosis wasn’t a deterrent for Anand, I felt the need to have this preemptive conversation with him because I know how disease is perceived in South Asian cultures (India, Pakistan, Bangladesh & Nepal) and in many cultures and societies around the world. In a culture where a caste system and arranged marriages still dominate, inflammatory bowel diseases in addition to other chronic illnesses are considered “flaws” and “undesirable” qualities to have in a potential partner. Our biodata (basically a resume for marriage) has no room for flaws of any kind otherwise we are simply not considered marriage material. For that reason, there is an initial impulse for many of us South Asian patients to not even consider marriage with a lifelong illness. And even if the thought of marriage is entertained, oftentimes parents and other elders stop their children from revealing their disease prior to marriage.
So it truly broke my heart to read that NY Times advice column where IBD patients were referred to as a “burden.” As a patient advocate, one of the messages I receive daily from members of the South Asian community living with IBD is EXACTLY that: “I don’t want to be a burden to my partner, Tina. I don’t want to tell my partner I have this disease because my partner won’t want to marry me.” And I console them and always, always, always ask them to share their diagnosis and if the person sticks around, great. And if the person leaves, at least we then know that partner wasn’t the one for us.
Seeing the word “burden” written next to “Crohn’s disease” in arguably one of the most reputed publications in the world didn’t just feel like a stab wound to my heart. It felt like a sucker punch to the work I’ve been doing to end such ableist thinking in minority communities. It felt like a tight slap in the face to the marriage Anand and I have worked so hard to build and that too, against all odds and against the advice of his elders.
Even though Anand has been my rock and my caregiver for 14 years now, our relationship is so much more than that. There is so much I can and do bring to the table too because marriage doesn’t just require able-bodied partners; it requires partnerships that exhibit deep compassion and compatibility. That doesn’t make me a burden nor does it make anyone else with chronic illnesses and/or disabilities a burden.
THE AMERICAN INFLUENCE
And perhaps more importantly, America sets the stage for movements that inspire much-needed change, similar to how Black Lives Matter has gained so much momentum around the world. So this advice column and its American origin was a disastrous influence on the South Asian chronic illness community. It made many of us question our worth deeply and feel ashamed of being ill and wanting to be in a loving relationship.
If as a society, we as Americans are being told to reconsider partnerships with the chronically ill and disabled, where are our morals and what are we teaching the world? We are teaching them that only able-bodied partnerships are acceptable and that only able-bodied people are deserving of love and respect. And that’s exactly what’s so wrong with the NY Times advice column. If one truly cares for and loves their partner, why would a chronic illness be a reason to quit?
And to be completely fair, according to the Institute on Disability, “If people with disabilities were a formally recognized minority group, at 19% of the population, [we] would be the largest minority group in the United States.”[1] So, if one-fifth of the American population lives with disabilities and we aren’t considered marriage material, where does that leave us? It leaves us with a large void in our society of disabled folx who feel unloved, disrespected and treated as unequal members of society and all for one reason – lack of ability. And what does that do the psyche of the country and the world? In a world where anyone can become disabled at any moment, the advice given by the NY Times column saying, “You don’t owe it to anyone to accept that burden; indeed, if you think you don’t want such a life, you have a good reason not to enter into the relationship,” is not only abhorrent; it’s jarringly unfair, ableist, crude and judgmental.
MY PLEA
America and NY Times, I kindly ask you to consider and respect minorities of all kinds (racial, ethnic, cultural, sexual and gender) who live with disabilities. The intersection of our already marginalized identities makes it even harder for us to find and secure relationships; to have ableist advice columns only add fuel to the raging fires within us is selfish and simply unacceptable.
And for those of you in the chronic illness community, I urge you to not lose hope after reading columns like this one. The right person will love you for who you are, chronically ill or not. Own your Crohn’s, own your chronic illness and/or disabilities, and always remember you are not a burden; you are a warrior. You are worthy, you are seen and you are heard.
We must keep working hard to change the rhetoric and create acceptance around interabled and disabled relationships. Much love to you all!
HAPPY DISABILITY PRIDE MONTH!
[1] Institute on Disability. University of New Hampshire. Report Finds Significant Health Disparities for People with Disabilities. August 25, 2011
One Comment
Danny van Leeuwen
Well done. Thanks for sharing. We just hit 45 years together. I have MS. My wife says, I am not your caregiver, I’m your partner