A clarion call

Posted by Malini Chib, Mumbai.
Malini is a freelance writer, activist and advocate of equal opportunities and full participation for the disabled. She is a Trustee of ADAPT (formerly The Spastics Society of India). She has now joined Tata Sons in the Diversity and Inclusion Cell. Malini was the inspiration behind the national award winning film “Margarita with a Straw”.  

While the current situation of global health crisis due to COVID-19 threatens all members of society, people with disability are the worse hit due to attitudinal, institutional and environmental barriers that are reinforced in the COVID-19 response. The problem for people with disabilities in the present situation of the country’s lockdown doesn’t stop with food and other everyday supplies, the problem ranges from medical visits to access to medicine and caregivers among others.

The government has issued guidelines and instructions for the safety of people with disabilities including giving access to medicine, provision of passes to caregivers and other essential needs to cope with the lockdown. But there is lack of practical demonstrations of the same and the actual implementation of the issued guidelines needs long-term preparedness and mass awareness on disability, among many others. The Times of India has recently shared a story of how the response team made by the Government failed to understand sign language used by people with hearing and speech impairment. The challenges faced by disabled people and their families due to COVID-19 has largely been ignored.

Media coverage

Amidst this devastating crisis, nobody bothers to take a look at disabled people and how they are surviving. Only a handful of disabled people like me are living at home and can have my meals cooked by people who work for me and my mother round the clock.

Well it is tremendously challenging and demanding. Some of them need help with their daily living functions and cannot do without human help.  It is irksome to have a helper with you 24×7 but it’s vital for survival. A carer and a disabled person cannot afford to maintain social distance as the disabled person needs minute by minute help.

Malini with her carer

I know many disabled people who live on their own and are reliant on members of the community to come in to do their work and leave. Even in my case, while I have a carer, my mother still puts in her utmost effort in supporting me. Ever since the lockdown, I have been overanxious and my heart is filled with curiosity and intrigue about disabled people living and surviving on their own.

Here are a few examples:

Zenia Malegamwala, from ADAPT, who has Arthogryphosis Congenial Mulitiple Complex disability and uses a wheel chair shares her experiences, “The lockdown completely deprived me of going out of the house, as I stay on the second floor of a building which has no lift, and am completely dependent on helpers to take me up and down two floors. Now with no helpers allowed, due to the Coronavirus scare, I have become house bound. I live with my parents, who are quite old and though they look after my needs throughout the day, lifting me up and down two floors, is quite impossible for them”.

Farhan Contractor, from ADAPT, who has a severe cerebral palsy (CP) sharing his lockdown experience said it was very difficult for him as he was left without his helper for the first five days of lockdown. His sister tried reaching the Ministry but to no avail. Luckily, the carer managed to go to his place later. “I am totally dependent on her as she does all from feeding to movements for me”. He also shared that being stuck at home for the last three months was a very difficult experience and going out after months of lockdown with a mask on was tiresome as mask makes breathing difficult.

Ruma Kirtikar, is a 55 year old woman with cerebral palsy. She is staying at Thane with her sister and her husband. She recalls, “I am stuck at home since 22nd March 2020. I am aware that everyone is facing same problems but now the government has started unlocking some areas, still I have to stay at home because of my disability. It seems it is more dangerous for us going out in COVID-19. I don’t know how long this is going to remain. I am getting scared now that after this problem gets over, will I be able to walk when I go out?  Since last 6 months, I am at home. I am independent at home but what about when I step out of the house? We are not sure when. It may be after one more month or six months or maybe after a year, God knows.”

“I can’t even go to my own flat as there are cases found every 2 or 3 days. My hair has grown longer and it needs to be cut, for that even I can’t go, though the salons are open. In our house, after unlocking only my sister goes out though she is turning 60 this December, my brother-in-law goes out rarely because he is 65 and I am 55 but still I can’t go because I am disabled. I don’t know when the vaccine will come and this will end. Now a days, I am getting more scared thinking if I get Corona then what? Because for certain things I need help, I hear that after going to hospital, patient’s families are not allowed to meet them. It is very scary. Now I can’t even travel independently. I need help. I wish this Corona goes soon.”

Nilesh Singit, a severely disabled man says that because of the pandemic he did not do his thrice a week dose of exercise. This has really affected his body and makes his body extremely tense and rigid.

Lucas Baretto, having polio says that his legs are gets swollen because he can’t go out or travel during lockdown which he used to do early and be fit.

These challenges faced by people with disability once again highlights that in order to successfully overcome such challenges, more persons with disabilities must be included in all decision-making and plans to manage the current COVID-19 pandemic outbreak. This implies that information and guidelines provided by government to prevent infection and how to act in case of illness must be made easily available in accessible formats. And lastly, restriction measures should be adopted taking into consideration the needs of disability. It is important to remove barriers that the group faces in accessing health services and hygiene products.

Malini with her mother, Dr. Mithu Alur

Due to our inability to say or act, we remain voiceless and powerless unable to voice our opinions and thoughts. Society needs desperately to change. Society should be open to listen to different kind of voices, only then society will change and include the marginalised and disabled people.

Malini has a Double Masters’ from the University of London, one in Women’s Studies and the other in Information Management and Technology. She has moved the Spastics  Society’s service delivery mould from Charity to Rights.

Malini’s greatest contribution has been the sharing of herself….of having the courage to put out in the public domain her sorrows, her thoughts….of constantly reminding everyone that persons with disability need to be a part of the mainstream and not apart from them. As an author, she expresses an inner world with graceful candidness through the pen rather than demonstrations. Malini’s debut autobiographical work was a book called One Little Finger, published by Sage, which contributed tremendously to awareness about disability and in recognition of this, she was honoured with the National Award by the Ministry of Social Justice Empowerment (MOSJE) Government of India, for being a role model in spreading awareness for persons with disability. Malini has travelled extensively and contributed in seminars, workshops, conferences and has lectured on training courses, both nationally and internationally.

Cover Image: Pinterest
Story Images: Author

Standard Disclaimer : The story contributors are responsible for all views and facts provided in their posts. Lockdown Voices and its editorial team is not accountable for the accuracy of the information posted.

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