Statement Against Dr Hedgewar Hospital's Improper Conduct in Issuance of UDID in Absolute Violation of the Rights for Persons with Disabilities Act, 2016
19th November 2021
My name is Shivangi Agrawal. I have applied for a new Unique Disability ID (UDID) online on 6th November 2021 via the website provided by the Department of Empowerment of Persons with Disabilities i.e. https://www.swavlambancard.gov.in and my Enrolment Number is: 0704/00000/2111/0144143
On 8th November, I visited the Dr. Hedgewar Arogya Sansthan in Karkardooma (District East Delhi), and in the below statement I will proceed to explain physical, psychological and emotional dehumanising trauma I was subjected to, in clear violation of protocol and guidelines as described on the UDID Website by the trained medical staff, which includes,
1. Non-Consensual examination by (para/medical) staff who refused to produce their ID despite multiple requests by patients with disabilities
2. Aggressive and violent behaviour of the attending physician
3. Refusal of the attending physician to listen to and acknowledge the concerns of people with disability
4. Withholding medical records of patient from them, despite multiple requests to share the same
5. Repetition of multiple paperwork already filled online
6. Refusal to reassess patients’ medical conditions despite multiple pleas and appeals in violation of the RPD Act, 2016
7. Violation of the fundamental Right to Privacy by sharing of private medical records with external staff and miscellaneous members of the hospital, as well as the Right to Privacy of People with Disability, including children with disabilities, present in the premise by sharing their private evaluations with other patients
On 8th November, I visited the Dr. Hedgewar Arogya Sansthan in Karkardooma (District East Delhi) after checking that it was one of the government hospitals near me that was certified in issuing Disability Certificates or UDID. When I reached Room 300B around 12-12:30pm, the staff who refused to tell me his name told me that there is only one professional in the whole hospital who is qualified to determine UDID cases, his name is Dr Hemant Sharma, an Orthopedician and that he was unavailable after 12pm so I should come the next day at 9am if I wanted to see him.
When I arrived the next day at 9:30am on 9th November at Dr. Hedgewar Sansthan, I followed all the procedures as told to me by Dr Hemant Sharma, which involved going to several different rooms of different floors, getting new and updated X-Rays of my limbs, seeing a physical therapist who carefully examined the functioning of each limb and body part and answering all the questions as asked, filling up the same applications again that I had already filled online for some reason and physically submitting it at their office. When I asked the staff why procedures had to be repeated manually, they told me that that’s just how it has worked for many years. Anyway, after completing everything, it was 3pm - I had spent more than 5 hours at the hospital without any personal break for lunch, water or even to use the restroom, the staff at Room 300B told me that I had to come back to the hospital again, when the committee would be meeting to determine my case. When I asked why I had to come back and what that repeat visit would involve when everything was already examined, submitted and ready for the committee to take forward so I can get my UDID online, I didn’t get any clear answers, just that the staff will call me.
On the afternoon of 17th November, I received a call from the staff at Room 300B that I should come for my second visit the next day at 10am along with my X-Rays. So the next day I took the day off from work and I reached Room 300B of Dr Hedgewar Sansthan at around 10:30am on 18th November along with my father. I was just asked to wait. After waiting for over half an hour and still unclear on why I was called, I dared to ask them the reason again and how long it would take because I could not stand for long hours. Dr. Sharma screamed at me and replied extremely aggressively and sarcastically that maybe he should leave all his work and answer my questions first so that it takes even longer. I responded with composure as I was already familiar with their rude tone and asked if they could just tell me where I was in the order of patients they were seeing. The staff told me that I was 8th out of 10 patients because I had arrived “late”. So I went back out and waited patiently till they called me.
Around 11:30am when I was finally called, there were 6 people in the room including Dr. Sharma and others who refused to tell me their names or what they exactly do. One of the men followed by a woman took me to a curtained private area of the same room and the man started touching and examining the movement of my upper limbs. Again, I am used to being touched, poked and prodded randomly by doctors, without consent, so I just took a step away from him and asked him to please tell me what he needed to examine and I could show him myself. I also asked him his name and if he was a physical therapist, his response was simply “yes”. He had the same evaluation papers with him that the other physical therapist had filled out with me on 9th November. So I asked why this procedure was being repeated, he just responded in rude and sarcastic tones basically saying that “this is how it is”, not really answering any questions. He started cutting off everything that the previous physical therapist had filled on the evaluation sheet without really examining me properly which I just found bizarre, and when I dared to ask anything, I was treated like I was incompetent and brainless for daring to suggesting that I could know my own body. This pattern continued and was further exaggerated when I was taken to Dr. Sharma again.
Dr. Sharma refused to even look at me and kept filling out the paper and screaming aggressively at any questions I asked. As he finished his calculations, I asked him what percentage of disability he was assigning to me and he said 86% so I simply asked him the reason because usually it is people with spinal cord injuries and severe conditions that are given that high of a percentage, when they absolutely had no sensation or movement in their particular limbs. For me, the only limb which is not fully functional is my right hand that doesn’t have cylindrical grasp and full rotation, but has full sensation and moderately functional. It is the right hand which I use to control the steering wheel on a hand controlled car. My other three limbs have certain bones missing, the lower limbs are missing bones below the knee, but I can walk upright, run, climb stairs without assistance or any devices. My hip joint is fully functional and my left hand, which has two missing fingers, is also fully functional with both cylindrical and spherical grasp, rotation, muscle mass, strength and movement - the left is my dominant hand and I use it for all activities including writing and cooking. When I was verbally and physiologically trying to explain these things to Dr. Sharma, he and the man who examined me continued to mock me and make me feel like I am not familiar with my own body, that they knew more about me than I myself do. They said that they cannot evaluate my lower limbs for any functionality at all because there are no bones there to evaluate so it had to be rated as zero - which is absolutely preposterous! They also rated my left hand as moderately functional even though I can do every single thing with that hand as mentioned above! They said that they have to evaluate and rate me as they would rate an individual who had faced an accidental or acquired amputation. When I told him that my case is different because I have a congenital amputation which has a higher rate of adaptation to the environment, no nerve damage and trauma/pain related symptoms like phantom limbs syndrome. Their only reply was that there cannot be a separate protocol for everyone which makes no sense because each individual case must be evaluated with a fresh perspective - that is our human right!
I kept trying to patiently request to please re-evaluate and reassess my case and because I continued to appeal, Dr. Sharma, recalculated my percentage and said it was now suddenly coming to 88%, 2 more percent points more than the 86% that I was appealing before and that I should be happy with that because everyone wants a higher percentage because that’s what qualifies them for bigger subsidies. He told me these things with such disgust, almost dehumanising and aggravating me more, and especially making me feel like I am incapable of anything. They continued to treat me like I was crazy and stupid for even suggesting that I knew the functionality of my own body. They would not look at me or even hear me out properly, and after a few minutes started ignoring me and only speaking to my father who was with me. When I questioned this, they said that they don’t want to speak to me about my own case, that they will only speak to my father about it and that I should leave the room while they talk.
I tried to explain to them that I am an adult and fully competent to hold a mature conversation. I also explained that I need to get a driver’s license and health insurance, both of which are more easily acquired if the percentage of disability is below 80%. But they refused to listen to what I was saying or understand my situation and behaved as if I was asking them for huge favours, when I was only asking them to do their job and follow the correct protocol and guidelines as described on the UDID Website (Link: https://www.swavlambancard.gov.in/public/files/ProceduresGuidelines.pdf) issued by the Ministry of Social Justice & Empowerment. I told them that I had the right to appeal these things according to the Rights for Persons with Disabilities Act of 2016, Chapter X (Link: https://legislative.gov.in/sites/default/files/A2016-49_1.pdf).
However they continued to dehumanise me, ignore everything I say and in fact, even violate my Right to Privacy which was declared as a fundamental right protected under the Indian Constitution in August 2017 by sharing my case with external staff, laughing at me and even making a video of me which will only prove that I was requesting them to just hear me in out patiently. They also kept violating the Privacy of other people with disabilities who were there to acquire their certificates, including children with disabilities, trying to show me their cases and their physical evaluations as if I should be pitying the whole situation instead of holding them accountable - I have proof of this on my Instagram live video as well.
Finally around 1.30pm, when I started having a panic attack and could not go on being treated like less than human, being violently ignored and screamed at, I begrudgingly asked them to please cancel my application even though I had spent more than 10 hours of my time just following their so called procedures. When they agreed to cancel and I asked them to give me my evaluation reports and X-Rays back so that I could use them to get a UDID from another hospital, they said it’s not possible. How is it that I as a fully functioning, adult individual cannot have access to my own medical reports and tests? So then, I had no choice, but to leave at around 3pm because of extreme dehydration and utter humiliation.
Further, I sincerely implore that proper procedure be followed, the concerned parties be held accountable and urge the committee to conduct the reassessment according to the guidelines with full accountability. I request that a fully qualified and government designated individual be assigned to my case. Finally, I request that my grievances be addressed following the protections described in the Rights of Persons with Disabilities Act, 2016: the right to inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons with nondiscrimination, full and effective participation and inclusion in society, respect for difference and acceptance of disabilities as part of human diversity and humanity, equality of opportunity, accessibility, equality between genders, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities.
Thank you for your consideration.
Gratefully,
Shivangi Agrawal
EMAIL: shivangiagrawal@live.com
MOB: +91 8130100230