It was a crisp December evening. The entire family was at our parents’ house for the holidays. I was in my childhood bedroom, on the phone with someone, when my sister barged in. “Mani is unresponsive. I think she’s unconscious, what do we do?” she said anxiously. Mani is the kind, middle-aged woman whom my mother hires occasionally when extra help is needed at home. We’ve known her for over ten years now.

I knew Mani was diabetic, but I didn’t know the particulars. I called a doctor friend to figure out what to do while my sister was trying to revive her. We tried everything my friend suggested but there was no response. I was relatively calm, but panic was starting to well up. Our parents were out, and my brother-in-law was running errands. On my friend’s advice, we decided to rush her to the hospital.

Being visually impaired, I’m no stranger to hospitals. I’ve been poked and prodded all my life. My annual checkups are a flurry of tests and consultations. Honestly, what I look forward to during those checkups is visiting the hospital’s rehabilitation facility afterwards. As a child, I got to play with accessible toys during my time there and learnt valuable skills as I grew up. But I’d never been in a medical emergency like this one before.

Not trusting the ambulance to reach us on time, we practically carried Mani to the car. We visited the closest clinic where they refused to take her, before driving to a large corporate hospital. As soon as Mani was rushed to the ICU, my sister began to worry about my nephew. In all the chaos, we’d had to leave him home with relatives he barely knew. She contemplated going back, and I encouraged her. She left and I was alone at the hospital. I didn’t even have my cane.

I was all alone in your typical depressing waiting room then. No news, no updates. After 15 minutes, I got frustrated, got up, and managed to make it to the ICU doors. It was a miracle that I found my way there without crashing into anything or anyone. I walked in and, as I have learnt to do in the crowded railway stations of Mumbai, I addressed the room and asked for help from no one in particular.

Someone rushed over and asked what I needed. I stated Mani’s name and asked about her condition. I stated that I was the attendant, expecting to get a concise update – like it happens in the movies. I was expecting and dreading the decisions I might have to take since I believed the situation to be critical.

The duty doctor came over and the person helping me explained my situation to her. The doctor first tried to get me to sit. When I refused and asked the patient’s condition, I just got a “We can’t tell anything right now.” I started to talk about Mani’s medical history, what little I knew, while showing the doctor photos of Mani’s medicines on my phone. She ignored all this, and I was left talking to thin air.

The doctor came back with someone and said, “The attendant is visually impaired, you handle him” – like I was not even present. With an unnecessarily tight grip on my arm, this person led me through the ICU floor, settled me in an office and sat across from me. He introduced himself as a floor in-charge and I immediately asked about the patient’s condition. In a tone I myself generally use with my five-year-old nephew; he gave me a so-called update. He said, “You see she has a sugar problem. She’s not conscious, and she can’t talk.” I launched into my knowledge about her medical history and her medicines; but like the subordinate before him, I got no response. 

This was the situation until my brother-in-law showed up. He ended up getting the crisp update I was hoping for. The update was – “Her blood pressure is very low, and breathing is shallow. We had to intubate her. She’s stable but we are running some tests before we can say anything”.

Mani spent a few days in the hospital and was discharged to the care of her loved ones. She’s now almost fully recovered. As I thought about this incident over the following weeks, I began to contemplate some disturbing prospects.

You see, I aspire to have an independent life. In the future if a loved one has a medical emergency and if I’m the only capable adult around, how would I handle it? What if doctors don’t take me seriously and don’t give me the agency to take critical decisions? What if they ignore potentially lifesaving information I’m trying to give them? 

What if I’m the one being treated as the patient?

You might think I’m blowing things out of proportion. But my fear isn’t unfounded. A survey of physicians in the US found that only 40% are comfortable providing care to patients with disabilities. Now consider how many in India would be comfortable empowering them to take decisions concerning the care of others.

To a lesser extent, this lack of agency plays out in the lives of people with disabilities all the time. The first questions many strangers ask PWDs are about their medical conditions and treatment prospects. Questions around intellect, capabilities, and skills are rarely — if ever — asked. Instead, assumptions are made based on outdated stereotypes and the portrayal of PWDs in popular culture. 

On the one hand, emphasis on medical treatments drowns out the importance of building practical skills to live and work. On the other hand, assumptions about PWDs not having these skills cause them to lose out on opportunities across the board.

Understanding the schools of thought or models of disability can help us better understand why this happens. There are three widely accepted models of disability — medical, charitable and social. People subscribing to the “medical model of disability” believe that a disability is purely a physiological deficiency and only medicine can fix it. In my experience, most healthcare professionals are conditioned to think like this. It’s obvious to me every time one of them refers to my disability as a “problem.” Now couple this with ableism, where people with disabilities are considered inferior to the so called able-bodied, and you may understand my insecurities.

I have the highest respect for medical professionals, researchers, and especially doctors. Their dedication is second to none. However, most of my optimism about living an independent life started from another place —cheerful halls of the rehab department. While doctors discussed conditions and problems, rehab professionals highlighted interventions and solutions instead. They practice what’s called, the social model of disability. By this model a disability is only caused by a person’s impairment interacting with barriers within society.

Rehabilitation professionals across domains — from orientation and mobility to accessible tech — work to dismantle these barriers. While medical breakthroughs get outsized attention, rehab professionals understanding of their client’s needs and thoughtful interventions deliver immediate results. The wider health care community could pick up a thing or two from them.

I understand that it will take time to get to a place where people don’t revert to their biases especially while under stress. Seeing persons with disabilities as anything beyond patients needing treatment may not be easy for some. However, I strongly believe it’s a cause worth striving for. 

Meanwhile, I will continue to gratefully lean on my doctor friends, make emergency plans, and hope I never have to use them.

Preetham Gandhi Sunkavalli is the Deputy General Manager (Brand Marketing) at Godrej Consumer Products Limited. He is also a member of the Godrej Industries Group’s DEI council.