Prioritize Disabled, Widows, Crime Victims & Children to show the world that #Indiaisabled

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Honourable Mr. Narendra Modi,

I begin this email with a sense of love and care to you as we are facing one of the most significant threat to the humanity. This I had some thoughts of writing a few months later, when things get better but, the matter gaining upon us so excessively, I found that what we have undergone should be brought to told to the nation. It’s a terrifying time, there are no comforting words to write to you. Having thrown down our initial challenges in the form of a letter, and, indeed, when I sat down to write, having intended it to you, the Prime Minister of India, my sentiments had grown into a greater extent and had received another direction. I, then, felt it should be first directed to the nation and later to you. I am happy writing you that way.

My name is Alok and I work for the rights of acid attack survivors, a small community of around hundred survivors, one of many communities for whom when disaster strikes they become very scared. Let me first express my gratitude for your efforts and the efforts of your team and our countrymen who have forgotten themselves and continued all the emergency services, especially to the doctors who are fighting so hard to bring down the pandemic and saving us. In this unfortunate moment of pandemic, I see you as a very fortunate man who is a proud leader of all these brave hearts. I write you as acid attack survivors, people with disabilities, people with serious illnesses, crime victims, widows and as an aware citizen of this country to bring your attention towards our issues during this pandemic. Knowing you commitments and value of your time, while I write in the comfort of my room, I hesitate to do this. But the circumstances require that I bring it to you personally. There are certain groups who have no voice otherwise, they are few in numbers and they are largely unorganised. If we forget them during the pandemic, it will cause their marginalisation every-time, the way they have fallen under this ‘marginalised’ section. They are the one who follow your every word what you tell them to do without asking, resigned to a kind of fate. They are following Janta Curfew, coming out on their balconies to applaud the selfless medical professionals, placing restrictions on their own from more than a month. Because you assured your nation that no one will be left alone, all 1.3 billion people of India was standing together this way and they took an active part in it. They believe you would not leave them behind.

The foundation I am part of makes me see all kinds of things that you wouldn’t because you are a prime minister of more than a billion people, a very busy man. I work for the people who need ongoing medical care, blind, low vision, and many who require ongoing ventilator care and other forms of expensive lifelong assistance. I know some survivors who are living in overcrowded housing and facing far greater hardship as a result of school and other closures. In some cases of abusive family situations they are suffering disproportionately from quarantining. As the crisis around the pandemic grows, the livelihoods of many survivor and their families surviving on daily wages have been shaken up. There are many who rely on the support provided by their carers are particularly at risk during this difficult period. A large section of the survivors belong to the vulnerable and downtrodden communities and they have little or no access to the sanitation standards and amenities required to prevent virus. There are many survivors who are on under treatment medication and have an impaired immune system, most of them depend on the big hospitals, hundreds to thousands of kilometres away from their homes. Most hospitals have stopped routine services and are running only emergency departments. Families, especially those without private vehicles, are finding it difficult to reach even at the time of emergency. For the girls who were recently operated, when procedures haven’t been done in time, chances of developing infections have increased.

Your government is offering the people with disabilities, an amount of 1,000 as a one-time payment in two instalments over the next three months? The 1.7-lakh-crore relief package by your government to take care of our countrymen, doesn't seem enough even for those few million people who need immediate help to combat the pandemic. There are more than Twenty One Million disability survivors, 2.2 percent of the total population, who are left with this two instalment hope. Despite the warning of discrimination against the disability survivors by the World Health Organization, I have not read any news from Indian government authorities on how persons with disabilities will manage mobility and access services during the lockdown. There are estimated 40 million widows, approximately 10% of all women, who have no support other than the government where there is no work to pay off bills. Even in the worst time, we should regard some value to maintaining our principles as a nation, we shouldn’t dismiss the voices of the oppressed. When things are so urgent and happening so quickly and the decisions are so difficult, that’s when I think it is so important to have clear guidelines, which the our government did not issue rightly. Social distancing, the one preventative tool, seemingly available to everyone is harder or to some cases impossible for the people about who I am writing about. It impacted them socially, economically and psychologically . After this phase we also need to also ensure that they aren’t overlooked at hospitals when country’s health care infrastructure reach a breaking point. We expect that our government to prioritise support for vulnerable class during this pandemic and should issue guidance to the authorities to help them. When I am seeing our country fighting in old ways against a ‘novel’ virus, I feel afraid for those who have always been treated as second class citizens. 

We are experiencing a confluence of multiple external shocks - a lockdown that has shut the cafe business, limited  the rehabilitation efforts of the foundation and halt the treatment activities completely. So far we have been able to respond boldly and decisively to the situation but the government needs an urgent policy to mitigate the economic impact on its vulnerable citizens and also on the organisations who support them. People with disabilities are more unemployed than normal people and are vulnerable to poverty. Lockdown has triggered a funding crisis for our foundation and employment of 30 women acid attack survivors and a male survivor is at stake. Due to shut down of the two cafes, our major funding source are down. With a little money in banks, we have no mean to survive for long, so does the other girls who have no other means, other than the foundation. There is a little hope of reopening of the cafes in next many months, especially when the workers are immunocompromised. It is even more unfortunate that the lockdown left the acid survivor community with no other alternative to depend upon, no work to pay their rents and loans, no access to hospital, having no way of knowing how much it will affect them to recover from the operation without clinical checkups, no place to secure from infections.

Our foundation in past one month has arranged all the logistical and financial support for acid attack survivors in need. But in a negative scenario, if the quarantine measures are extended for longer periods, it might cause bankruptcy to the foundation and unemployment state for at least 30 acid attack survivors. Also, there will be no money left to continue our rehabilitation efforts for the survivors and it will affect hundreds of them. This week, the youngest member of our foundation Ayesha (6 years) fell seriously ill and became unconscious. She had to be admitted to a distant hospital in Shiliguri. She was recently operated and a food pipe was transplanted. As the hospital where she is under treatment is in Vellore, which is more than 2000 kilometre from Siliguri, we had to manage with a local hospital in the same city, more than 100km away from Ayesha’s home. There is another girl child who was recently operated is being taken care by the team at our rehabilitation centre in Noida, a rented place with limited resources. The child needs follow ups to heal her wounds but she is waiting. There are two survivors who’s family members have cancer and they are looking at us to help them in though times. We are not sure for how long we will be able to pay the rent of our centres, help in extraordinary situations and it will become hard to meet the expenses to run our foundation. 

However, as much as we try, it is likely to take at least a year to be resolved, and the cafe model would suffer even longer. We are looking at different possibilities to survive the organisation. As we, the acid attack survivors, have always been subject to unfortunate situations, and has dealt with them in quite similar ways over the years. It is not that a dark past has been erased but we ourselves have changed the way in which problems work. We don’t want to find ourselves stopped, beaten by a micro-millimetre tiny thing. Knowing our role at the time of a crisis, in continuing to meet the needs of the hundreds of people who rely on us, we consider ourselves at war. We are responding to immediate needs and in helping with financial and emotional support to the girls who need them the most. We are creating a physical fund with money for anticipated future needs and urge our countrymen to contribute. Despite all the odds, during this hard time our proud Sheroes have also helped individuals with whatever they could. When everyone’s heart was meting over the scenes of daily wage workers walking miles to reach home during the lockdown, girls who were on the top risk offered to distribute lunch packets and despite advices they did it. I have seen them posting videos on social media sharing the stories of hope. Their life stories are itself a source of motivation in this very sad time of today. 

We urge government to bring policies for those who have special needs like us, the acid attack survivors. We are also requesting government aids to the NGOs, at least to pay the salaries, and the rents. We suggest you to please create a reserve fund that could help foundation like ours to cover overheads in the short term. There are a large number of vulnerable people who depend on such organisations for every need.

I am submitting the key suggestions help the vulnerable communities:

- Adopt a national strategy and plan of action and design a comprehensive disability policy plan for COVID 19. Ensure they would be included in whatever actions government takes to mitigate the long-term damage caused by the pandemic. The people developing policies should involve stakeholders like us.
- Provide a respectful financial compensation to all the acid attack survivors and special need survivors in the country. Bring policies to ensure they can keep their jobs and gain employment after the pandemic is over.  
- Delivery of rations, food, medicines and necessary medical equipments to those who have urgent needs, 
- Promote hygienic access to services in the time of infection, improve facilities at hospitals and at various emergency services to make them disabled friendly. 
- Providing government Bailout to Sheroes Cafes and other such projects.
- Ensure free checkup and emergency ambulance services when it is needed, keeping those in view who are living in remote areas.
- Bring protocol and guideline to increase public awareness and roles and responsibilities nation hold for such people during a crisis. Send regular messages about zero tolerance to violence within homes.
- A dedicated helpline number for people with special needs to be launched as soon as possible. A dedicated research and data collection on the issue faced by disability survivors
- Online counselling for survivors, families and caregivers

The one thing I want to write to the humanity is to explore the pain of these people, and examine the responsibilities we hold as humans and how to make a world equal for all. This is a rare moment, a war of its own kind, find your role in this war and help whatever way you can. There is no doubt that, however challenging the struggle, the outcome will be a beautiful survival of mankind. When at home do vlogging and share public messages, sing songs, if possible volunteer, or help elderly and women at home, or simply support the government by complying with advisories and practising safe distancing. I wish when after decades people will look back at this time, they will learn from it so that it can never happen again. Hopefully after the appeal from the the Prime Minister of India, our nation will behave more sensitive with the people who have special needs.

Regards
Alok