By Nikhil Jayswal
Hey everyone! I hope everyone is well and safe.
I am currently a graduate research student in the Department of Aerospace Engineering at the Indian Institute of Science in Bangalore, India. I got my undergraduate degree in Mechanical Engineering from the Delhi College of Engineering in Delhi, India. Both of these institutes are among India’s best of the best, and I worked hard to get into these institutions. The concept of empathy though can be alien to even the best minds, as I learned through multiple unpleasant experiences.
I was diagnosed in 2013, at the beginning of my seventh semester. I could not go to college for 2 months and I missed my mid-semester exams. After 2 months and still not fully recovered, I stepped into my first lecture of the semester. The moment I entered the class, the professor inquired about me. I told him that I got sick and could not come to college. I was standing at the door telling him my tale, and in return, he advised me to drop the semester. I did not feel good about that. I told him that I had submitted a medical certificate detailing my condition, but he told me (rightly) that a medical certificate can be submitted to compensate for a maximum of one month of absence only, as per university policy. I had no words to say to him. I did not want to drop the semester. I knew I could still catch up, but I did not hear any encouraging words. In the end, he did let me attend his class reluctantly. That week I got to know that a classmate of mine had also missed the midterm exams because of some acute illness. I was told that his father met the head of the department and that he was consequently having oral exams to compensate for his missed evaluation. My father, unfortunately, could not come to meet the HOD, but I assumed that since I had submitted the medical certificate and since my illness was a severe one, I would be extended the same courtesy. I wrote an application and submitted it to the department for consideration. I never got to meet the HOD and I was sent with my application to the office that dealt with examinations. I gave my application to a person in that office and verbally told him about my condition and that I had missed my exams. I still remember the derogatory tone in which he replied to me - “What do you want from us?” I told him that I wanted make-up exams in some form so I did not lose out on marks that I could have gotten had I not fallen sick (which was written in my application). My application was thrown among a pile of papers and I was sent away. I never heard from anyone again and I never asked anyone for anything again. I gave my semester finals and did as much I could. I had a score of 82% in my sixth semester and that semester I scored 63%. It hurt back then, it hurts now and it’ll hurt me in the future too. I worked very hard in my final semester and scored 85% which enabled me to get a First Class with Distinction degree in the end, but it still hurts. I’m glad I was diagnosed late in the course of my study. If it had been any sooner, I probably would have graduated with a second class degree.
Now, I don’t understand why I was not accommodated, when all it took for another student was a meeting between his father and the HOD. I submitted an application and the required certificates. I went through the proper channels. Yet, I had to suffer. The sad thing is there is no official policy to help students in such scenarios. Parents of students with “strong” backgrounds have the confidence to come and meet the concerned officials and they are accommodated, but it’s not the same for a student with a “weak” background. This was not the first time I had experienced something like this. Students are made to run from office to office because of a lack of policies to handle uncommon scenarios. Socio-economic background plays an indirect but major role here. As income inequality widens, not many students with underprivileged backgrounds can afford quality education, even at the primary levels, which leads to under-representation at higher levels of education. The stigma attached to illness has a similar effect. A lack of accommodations for students with chronic illnesses discourages them and can often be detrimental to their mental health. It can also lead to students pushing themselves too hard to keep up with healthy students, which can lead to flare-ups and deterioration of their health condition.
Let’s fast forward a few years now. In 2019, I qualified for admission into graduate programs in both the schools I had applied to. One of them was the Indian Institute of Technology in Delhi (IIT-D) and the other was the Indian Institute of Science in Bangalore (IISc). Delhi is my home city. I get my treatment and medical supplies from the All India Institute of Medical Sciences in Delhi (AIIMS). My entire medical support system is here. Bangalore was an unknown city. I would have to set up a system of care from the ground up, but IISc is also the best institute for research. However, if I wanted to join any institute, first and foremost I would have to be deemed “fit” for graduate studies by the medical personnel at the institute. This was a bummer. I did not know that a medical fitness certificate would be required to pursue graduate studies. After all, the very reason I applied to grad school was that I would not be limited by any medical requirements that prevented me from getting a job suited to my qualification. I went to IIT-D with a colleague from work who studied in the department I had applied to and met the HOD. The crux of the meeting was that if I could get a fitness certificate from my doctors at AIIMS, I would probably be cleared by the institute medical staff for study because AIIMS is the best hospital in our country. I figured the same would work for IISc too. My doctors at AIIMS were delighted to know about my admission offers and they gave me the required fitness certificate, but they did express concern on the probability of its acceptance by the institute-appointed doctors. They also told me that in case of any issues, I should fight for a fair evaluation by a qualified gastroenterologist who would very likely support me because my GI at AIIMS is a renowned doctor. I can’t ever express enough gratitude to my doctors for supporting me in every possible way. With the issues of fitness dealt with, I had to now find out if I could get a private room with a personal toilet. I’ve never used a public toilet and I could not use the common hostel toilets. One of my brother’s friends had been provided such accommodation for him and his mother at IIT-D. So I didn’t inquire about it. For IISc, I emailed the concerned hostel authorities explaining to them my situation and asked them if I could be provided such accommodation. They assured me that I’d be provided the required accommodation. This assurance gave me enough courage to move out of Delhi and accept the admission offer from IISc.
Things however did not go right when I arrived at IISc. I was assigned a room shared between 3 people. I was heart-broken and booked a hotel room for a few days until I got the proper accommodation. My request was not received very well though. Nobody was willing to listen to me and understand my situation and I was being sent from one office to another. I gave up after 3 days, and I remember calling my mom and telling her in tears that I don’t want to study and I’d be coming back. The next day I went to the Dean to try one last time, and while he acknowledged that he could not help me, he connected me with the hostel warden who was kind and patient and listened to my woes and directed the authorities to help me. It was only then that I was listened to, and I was assigned a room with an attached toilet, rather unhappily by the person in charge. I was given a room that had not been occupied for a long time. Its balcony is painted with bird poop and it is the only room in the seven-floor hostel with such a balcony. The toilet flush doesn’t work and I have no hot water. I didn’t protest though. I shifted to that room. It’s a filthy room, but I have no other option. The room next to the one assigned to me is similar. A few months after my admission, a completely healthy student was assigned that room, and it is completely functional. I wonder why I was assigned a dirty, non-functional room when better accommodation was available. I was also told that such rooms are assigned to physically handicapped students only, yet I saw a perfectly healthy student get the room.
Such events hurt and sting. The sad thing is I can’t say anything. It feels like I have no rights and I’m completely at the mercy of the administration. I cannot advocate for myself and there is no forum for me to discuss my issues. I have made myself content with everything and I focus on my studies. I do not discuss my condition with most of my professors or classmates. I do not go to classes and have very few friends. I had presumed that the best minds of the country would respond with kindness towards me, but I was wrong. I do not ask for any accommodations for exams. I keep myself starved before exams to eliminate any possible mishaps during exams. I am happy at good grades and silently accept bad grades, even though I know they were bad because I give exams in a fatigued and starved state. I have been giving exams and interviews while starved ever since I became incontinent and experienced chronic pain. There is no consideration for students with such conditions for public exams. I have always been evaluated as a normal healthy student, which is unfair and unjust, but there is no other way. If I want a degree, I have to adapt to the current system which is inflexible and inconsiderate.
Let’s discuss finances now. I can’t work while going to grad school as per the law, and I get a government stipend of INR 12400 (USD 165) every month, 80% of which is spent on ostomy supplies and my meds. The remaining 20% is in no way enough to support my other expenses. I also paid the tuition and hostel room fees with credit cards, and hence, I have a significant amount of debt. So I work illegally, during the night, which affects my academic performance and also leads to extra fatigue because of which I skip classes to sleep. The funny thing is when I had visited the health center at IISc to get the fitness certificate, I was asked to explain my condition, both my IBD and my ostomy (clearly the doctors did not understand my illness) and even after all that, I was told to not use my illness as an excuse to skip classes. Coming back to finances, I wrote an email to some authorities inquiring if there was any possibility of financial aid for me. I was sent to the same doctors who did not understand my condition for evaluation of my needs. They claimed that I was demanding money and that my ostomy supplies (which are my lifeline) were “consumables” which could not be reimbursed for. I was told that I’m arguing and that I should submit an application and a decision would be taken after the application was reviewed by a committee (that rarely met as per another doctor from the health center). I did not apply. I simply emailed the authorities that I did not need any help and that I would find a way to make it on my own. I told them about how I was not happy by the way the institute medical staff treated me. I was then contacted by one of the Deans who was kind and assured me that I would be helped. My file went around from one person to another until it finally reached the Director who sent it back to the medical officers at the institute health center. A one-time lump-sum aid was recommended. The aid amount covers my medical expenses for a semester only. Again, I had to quietly accept whatever “aid” I was getting. But here’s the funny part. When I went to receive my aid, I got to know that nobody knew where my file was. The Director’s Office claimed that it was sent to the Finance Office but the staff there cannot find it. It has been 9 months since I had written that first email, and I’m still running from office to office to get this relief amount. The institute spent crores of money on a logo that was eventually rejected by the students and thousands of ID cards had to be printed twice. But the “Student Medical Relief Fund” does not have enough money to support a student with a chronic illness and an ostomy for a year.
I want to say a lot more, but then I think, how does it matter? I might personally feel a bit better, but what does it accomplish? Are systems going to change? Is anybody listening? I feel that until and unless we create an inclusive environment where students and children from all kinds of backgrounds can get to know each other, things will never change. The collective voices of people who are suffering are not enough. Things will change only when the general population and society support advocacy initiatives. The healthy population needs to empathize with those who are suffering. Right now, it is important for the IBD student population in India to be vocal and to not be afraid of speaking up, but it’s equally necessary (although disheartening) to be aware, accept the fact that things may not always work in your favor, and not let rejections affect your mental health. The process of change is going to be very slow and sharing your stories publicly is the first step. Advocacy in India is not a right, it’s a privilege, and right now it’s necessary for those with that privilege to share it with others. This is also why I love the CCYAN fellowship and am grateful for it. In the end, as a chronically ill student in India, I just want to tell the IBD kids and teens of my country that it is going to be hard, but it’s doable, and I promise that I’ll do everything in my capacity to make it easier for you so that you get what you deserve.
“Everything you have ever wanted is on the other side of fear” ~ George Addair