India's second COVID-19 wave has made healthcare, ableist even pre-pandemic, harder for disabled people to access

What is ‘normal’? In this fortnightly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.

This is the first in a two-part series documenting the impact of India's second COVID-19 wave on people with disabilities.

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Last year, when the coronavirus pandemic arrived at India’s doorstep, research by disability rights organisations across the country showed that disabled people were afraid of contracting the virus because of the tactile nature of support required in their everyday. Additionally, due to the support and care needed in their everyday, they were worried about passing the virus to their elderly family members or care givers.

Things have been very different in the second wave. Among the vulnerable groups affected in India are disabled people, who have been declared by WHO as a high risk group. We are seeing many disabled people contract COVID-19, a lot of distress calls on social media and learning to navigate all the complications that come with disabled people, already vulnerable, dealing with a virus. In the news, both abroad and in the country, we know the medical system is having to make difficult decisions on who gets to have that impossible-to-find hospital bed. Among the fears of not being provided adequate care because of their disabilities or comorbidities, many disabled people share their experiences of COVID-19:

Volunteers like Vishnu Soman, founder of volunteer-driven initiative Smileys India, have been part of the COVID support helpline set up exclusively for disabled people who have contracted COVID. Many of the gaps in accessing care for disabled people remain from the first wave in terms of inaccessible information on how to respond as well as specific support needed for them.

For instance, Vishnu shared how reasonable accommodations were needed for blind and deaf people to access the medical support they needed. “We had to arrange for video consultations to ensure that the blind or vision impaired person can learn and through tactile ways know which medicine needs to be taken, when. Similarly, sign language interpretation support was provided for deaf people looking for medical consultations, since this is not necessarily provided else where.” Vishnu also mentioned a situation where a blind couple, who had tested positive for COVID-19 were terrified of visiting a COVID centre because of fears of their safety because of their disability.

Others we spoke to faced different barriers to accessing care. Chayanika, a student who lives with chronic illnesses and disabilities in Delhi, spoke about their situation traversing a system they are used to navigating in this time of crisis. They said, “I am already at risk for blood clotting from the medication that I use to treat my chronic illness. So finding medication for COVID which would be compatible with my other medication was a little bit of a journey. I had to talk to six doctors at once to finally find a medicine that would suite me. This made things very difficult for me.”

Since Chayanika also lives in a shared flat in Delhi and they had tested positive, they had to navigate going to the hospital for a CT scan and support themselves by asking for reasonable accommodations like a chair to be seated in. “As a person who already lives with chronic pain and fatigue which were worsened by COVID, it was impossible for me to stand for four hours waiting for the doctor to see me. Often people see me as a young person and assume I can manage to stand for long periods or wait longer because we are yet to understand that some young people are sick and can have invisible disabilities too.”

Karishma, a feminist and activist based out of Mumbai, shared concerns similar to Chayanika. She lives with lupus and several more autoimmune conditions that have already impacted her in severe ways over the past 18 years. Karishma also shared that initially it was hard for her to tell if it was just a “regular flare up” or it was COVID related. Finally on being tested and following some fluctuation of her SPO2 level, she was admitted in a hospital. She said, “The first time when I reached the hospital’s emergency room, I was told to go back because my vitals were in the normal range; despite pointing out that I am a high-risk patient on immunosuppressants and have many organs already involved because of my pre-existing conditions. But they let me go. During this process, several times I had to hear that I might not survive and this is a real possibility because we don’t know how to treat lupus or COVID either or perhaps both together.” She shared this anecdote matter-of-factly probably because of how often she had heard it in the past.

Her story involved turning to other hospitals and having to negotiate, similar to Chayanika, the medications that would support her recovery as many of these medications for Lupus and COVID-19 work contradictory to each other. However, the experience in the second hospital in Mumbai was very different, she said almost relieved, “Here I was able to find a doctor who supported me and in consultations with other specialists was able to stabilise me. They were even able to support my severe neuropsychiatric seizures, which is a manifestation of lupus in my body. My condition was monitored and I was able to access medical support. Of course, the recovery ahead from COVID alongside my existing conditions is going to be a long one."

Disability rights activists, self advocates and allies of the community have been flagging since the first wave how disabled people are a high risk group who need to be recognised as such because of many of them having difficulty in maintaining social distance due to the need for care giving. For Abha Khetarpal, disability rights activist who uses a wheelchair, it was a difficult cycle of first contracting the virus and then her mother falling ill as well. Abha shared that the experience of having COVID very hard on her emotionally as well as physically.

She said, “How could my elderly mother keep me alone and isolated? She had to come to my room, give me medicines, give me food, help me sit up and eat or take me to washroom or even sponging me because I could not bathe for more than 10 days as I had no strength at all. Even before COVID the strength of my muscles had to be maintained with physiotherapy; but now the weakness and fatigue is much worse. So, things were bad for me already. And then, my mother contracted COVID. Though she was always sanitising everything around me including my wheelchair, she was not spared. Even after she got COVID she couldn’t even fully rest because I still needed support to go to the bathroom, and more.”

Abha also shared that at that time it was almost impossible to find home nurses to aid them because of the nature of COVID and the risk of being exposed to the virus. She added that the guilt of her mother needing to support her even when she was sick herself was hard on her.

Shivangi, a counselling psychologist from Delhi who uses crutches, expressed similar concerns. The 26-year-old contracted COVID along with her whole family. She spoke about how her recovery was facilitated by her parents who also tested positive. “Before COVID, I was able to support around the house, do basic chores. But the exhaustion and weakness that came with COVID amplified my needs as a crutch user. It was very hard me to navigate this as it was a lot more disabling and my support needs had increased.” She addressed how it was easier for her to avail more expensive home tests, or food deliveries due to her social and economic capital and shared, “without these cushions that supported us, it would have been harder on my family and me.”

Since disability is so vast and varied responses are needed, especially dependent on the disability, there is an immediate need for informed responses at this intersection. For instance, Vishnu from the volunteer support team based out of Bengaluru, shared how they found that many of the disabled people reaching out to them didn’t have a disability certificate. This means that they probably do not have access to state support systems, social security and protections. Additionally, he shared an incident where a boy with Down syndrome needed a place to live as both his parents were COVID positive. Since the existing centres for children were not equipped to handle the case, they couldn’t extend support. He said, “We searched a lot to find a centre or space for him to be safe till his parents recovered, but we weren’t able to. Several times we were faced with this problem with respect to children with disabilities who needed care because their parents, their primary caregivers, had to be in isolation.”

Most of these experiences tell a story of how crucial care has been to recovery for disabled people and also how hard it can be to access this care in a time of overburdened healthcare systems that even pre-pandemic often did not cater to disabled people. With hospitals triaging, and doctors having to make difficult decisions about who gets access to treatments, disabled people approaching hospitals are concerned. Nearly all of them shared in conversation how recovery from COVID-induced effects like weakness in the limbs, ability to return to activities they were able to do pre-COVID are all yet to be navigated. For some, choices have to be made to build some strength before returning to their regular physiotherapy which was an essential element of their everyday care for their disability.

As a system, even before the pandemic, disabled people have shared how ableism features in their interactions with the medical, healthcare system and mars their access to quality healthcare. With COVID-19 in the mix and the lack of scientific information on how it would impact people with disabilities, it seems like a steep climb to recovery for many.

Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works on programme development with Rising Flame and is the co-founder of The Curio-city Collective.


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