The Impacts of COVID-19 on People with Disabilities - Disability Inclusive Response and Considerations

I was in complete shock when India 21 days lock down was announced on 23 March 2020 due to Covid-19 . I had no cue how I will get access to my caregiver who helps us (my sibling and mom) at home for activities of daily living. I started talking to local police and higher officers in the government. I was denied the curfew pass as I was 'disabled' and was asked to call 'relatives' to seek help during the lock down. I was stunned with this kind of behavior but could understand the gravity of the situation- they did not had any instructions/orders on 'disability inclusive response and consideration' during lock down. 

Challenge

My priority was to get a curfew-pass for my caregiver and then move on to find solutions to this distress as there are senior citizens and people with disabilities (more than 20 million) and many have high support needs. 

I got a curfew pass with immense difficulty from local police station that too when the police personnel got an order from local administration to process the pass. My care giver came after almost 5 hours, exhausted, upset and feeling miserable. I consoled our care giver and asked to use the curfew while commuting to my home.

I was excited

The day after was a long day. Getting to know how the passes can be made available with active advocacy with the nodal Ministry supporting Disability Rights, Social Welfare Department and District Officials was extremely informative and exciting. I got to know that e-pass, which was initiated by Delhi Government was an excellent opportunity for care givers to get it and then commute to their care seekers place. 
However, there were two issues:
(1) the pass can only to taken under the category- any other service exempted by the government 
(2) it was to be approved/rejected by a district officer. The catch here was to get an order from higher authority so that care givers can be notified under the essential services allowed during lock down (other essential services are list of almost 9-10 items).   

I see a ray of hope

I messaged Secretary, Department of Empowerment of Persons with Disabilities, Ministry of Social justice & Empowerment, Govt. of India. I got a positive response from her  and few minutes received a call from higher officer from the department. I spoke with him apprised him of the situation and he understood the gravity. He connected me with other Delhi Government officers and was guided online how to apply for e-pass. It did not work. 

I fought- I lost!

Meanwhile, my tweets and face book message gathered lot of empathy from world over. Thanks to social media, which enabled me to connect with those who are working on disability rights and my civil society organisation connections. People who knew me understood, some suggested that I can ask our care giver to stay at my home for 21 days, others inspired my to fight!! I decided to continue to find a solution that works pan India and for those also who are not empowered, do not have a voice and/or are not even educated.

I messaged my friends in United Nations and got to know how to influence the government officers as everyone is extremely supportive during Covid-19 crisis. 

What worked was an agreement in principle by one and all.

What did not work was an assurance if care givers can get an e-pass as there was no past records globally! 

I fought again- I won!!

I again messaged my Mentor and Adviser to help. She guided me, asked me to create alliances and network with all concerned. I decided to go on.......

Next day, was an eventful day as creating network was another exciting task. These are the lock down days, hence getting ready in morning and sitting with desktop opening 6-7 work panes - whats app groups (started with all group which never had much time to post messages earlier), emails, twitter, face book, instagram and what not, list is endless. I wanted to connect to the world to gather information how are 1 billion people with disabilities and another 1/2 billion senior citizens  living during lock down without caregivers. PN- caregivers not only support us in physical activities but also support us for our emotional and mental well being.

I got covered by couple of print and electronic media and moved on....

The days got interesting and exhausting with all these activities. Another important activity, which got added was calls and emails to help those in need of caregivers. There were many who knew me and read my face book page (https://www.facebook.com/anjlee.agarwal.1), many unknown who sent messages on messenger and others through emails. I was working alone from home and was very difficult to get help from colleagues working within my organisation Samarthyam. My working hours increased in first two days of lock down from 8-15 hours. My family was bit apprehensive, as I was excited and optimistic. 

Achievements
1. Got added in a whats app group of 28 senior State Officials and State Commissioners for Persons with Disabilities. Thanks to the government for all their support.
2. Got active on groups and networks of women & men with disabilities - I have currently connected with 340 Disabled People Organisations (DPOs) in India to advocate on the issue of essential services- food supply, medicines, assistive devices, para medical and care giver service.
3. Govt. of India Disability Inclusive Guidelines -  in light of Covid19, were issued  
4. A web page on fight corona was developed and added in our website (www.samarthyam.com) 

WHO Notification

Who could be more happy than us after reading this message from WHO: during #COVID19 people with #disability should put a plan in place to ensure continuation of the care and support they need, including considering increasing the pool of caregivers they can call upon. I could see a ray of hope, WHO is talking about it now.  Due to my tweets and flagging this issue of access to caregivers as essential service and as basic human right!!

My advocacy to get similar notifications pan India

While change itself may take time, we cannot accept “no” in the meantime and need to be pushing as hard as possible when fighting for our rights. Hence, the DPO network are encouraged to check their state orders (which, I am also doing in my govt. officers whats group) and ensure that those are Covid-19 Disability Inclusive Response.

My next move

To set a precedence from at least one state. Delhi being the capital and falls under both central (federal) and state government, I decided to follow up with Delhi government. And fortunately, the Delhi State Disability Commissioner is extremely proactive and issued another curfew pass order highlighting the need of care givers for persons with disabilities. 

And what followed up next was like a dream come true.

The Delhi Government e-pass can be applied online and has 

now an added category of caregivers.

https://epass.jantasamvad.org/epass/init/

Today, 7 April 2020, I have created history during Covid-19 lockdown. I can praise myself as it was not easy. A Govt. order to get an e-pass for caregivers is not only first from #India but entire world. It was possible with big support from Secretary and Officers of Department of Empowerment of Persons with Disabilities, Ministry of Social Justice & Empowerment. We need to go on....

It is just a beginning to end Covid-19 crisis and begin disability inclusion during pandemic. Disability based discrimination is not acceptable & we in India had advocated for it. Today India leads as networks of disability rights activists are following us!!

Author: Anjlee Agarwal

Email: anjleeonly@gmail.com
Twitter: access_anjlee

Website: anjleeagarwal.co.in