Aparna, Zainab and Preeti
Experiences of women with disabilities during COVID-19
Staying indoors for a long time may mean very different things to different people based on the context and family dynamics. For some, it means going inwards, taking a pause, appreciating the beauty of nature, finding self. For others, it means curbing of freedom, being prone to abuse at home, feeling depressed and underconfident because their regular job had become their identity and a reason for respect from their family members.
The idea of a lockdown during a crisis like the COVID-19 pandemic changes a lot when we talk about people with disabilities. A person without disabilities has access to information at the drop of a hat and can move around easily seeking more information and help. The entire world functions for people without disabilities and designs most things for their easy access. People with disabilities are often forgotten. This holds true for the COVID-19 pandemic as well. The most disadvantaged are women and children with disabilities.
Sightsavers works with many women with disabilities who are members of their district disabled people’s organisations (DPOs). When the pandemic hit, we realised that it would have an impact on the lives of people with disabilities, especially women, whether through an increase in workload, abuse at home, or being unable to get easy access to sanitary napkins and other personal items.
In Rajasthan, we created a WhatsApp group that has women DPO members. Women from all districts take part in discussions about their lives, current updates of their districts and other issues. Those women who do not have access to the internet or a smartphone are reached by telephone calls, and the women leaders of the DPOs regularly disseminate information to them.
The DPO leaders ensure that all relevant information reaches other DPO members, either through the WhatsApp groups or phone calls. They are also aware that many people spread fake news, so they try to verify the news received on groups before disseminating it further. They are frustrated that official information is not accessible at all. It is a challenge for people with visual impairment to know about everything going on regarding the pandemic, especially about social distancing and how to wash hands and safeguard themselves from others. The lack of accessible information hits people with hearing impairments the hardest, especially those who can’t read, as they rarely know sign language. The DPOs do not have the kind of resources or facilities to make information accessible to all people with disabilities but they try their best to disseminate information in coordination with the local authorities.
We spoke to three women about how the COVID-19 pandemic has had an impact on their lives. (All names have been changed at the request of the women interviewed.)
Photo © Sightsavers
Aparna lives in a quaint little village of Bikaner with her parents, two brothers and one sister in-law. She has a physical disability that affects one of her legs but has been managing her day-to-day affairs without any assistive devices. She has difficulties in lifting bags and other objects while walking. She works for an NGO, counselling estranged runaway children and helping rehabilitate them. Aparna is one of the leaders of the disabled people’s organisation in her district, and her major work entails advocacy with the government for the rights of people with disabilities. She is agitated about the lockdown, describing it as “like living in a jail”. She misses her work, and told us that cases of child abuse have increased significantly since lockdown began. She feels helpless for not being able to do much about it.
The only thing that makes her feel good is working with the local administration with food distribution to people with disabilities in her village. She has a list of people who she calls regularly to inform them about the latest updates on COVID-19, how to take care and be safe, how to wash their hands thoroughly, and the importance of social distancing. She listens to their problems and provides emotional support over the phone. She works with the local administration to ensure that people with disabilities are receiving food packets and that women have access to sanitary napkins. This is challenging work, because she cannot go door-to-door so has to do it using her phone and negotiating skills.
Aparna tells us she had little confidence while growing up as a child with a disability, and never received encouragement from anyone that she would ever have a job or earn her own money. Being a DPO member has given her the will and confidence to voice the needs of people with disabilities in her village to the local administration, to ensure that they do not remain deprived of necessities during this lockdown period. She feels proud of her accomplishments.
This lockdown has been hard on Zainab. She has no respite from her family members and fights in the house have increased a lot. She lives in a big village of Chittaurgarh district with her husband, two children, and mother in-law. Zainab, who is 44 and has a physical disability that affects her hands, is a proud member of the disabled people’s organisation of Chittaurgarh district and works in a self-help group. She runs a grocery shop in her house (for which she had faced a lot of criticism from other family members because of her disability and gender).
The lockdown has given a big blow to her income. She has permission to open her grocery shop daily but only for few hours in the morning. It is a big challenge for her to procure things from the wholesale market due to the lockdown. She deals with angry customers regularly because the prices of the regular consumables have gone up, and she endures the regular scrutiny by the police.
One of Sightsavers’ partner organisations in Chittaurgarh started an initiative for the district administration to make masks – the female DPO members were engaged with this from the beginning. Zainab enjoys this work and wants to do as much as she can for the people during these tough times. She has also taken up the responsibility of ensuring that people with disabilities in her village receive food packets distributed by the district administration. She keeps in contact with people with disabilities in the community to inform them about COVID-19 health advice and the latest government guidelines. She is aware that many women in her village need sanitary napkins and are too shy to ask the men of their houses for it because these days only men are venturing out. Zainab keeps as many sanitary napkins as she can in her shop, and informs women whenever she has more stock. The police are very strict about movement of people in public otherwise she would have distributed these door-to-door.
Preeti is finding the lockdown very challenging. She’s scared to go out of the house to buy anything because she feels intimidated by the police (who are strictly monitoring the lockdown) and avoids coming across them at all costs. She feels shy of buying sanitary napkins because the police often interrogate people about the things they buy. “If it’s medicine or rice or vegetables, you can tell the police,” she says, “but how can you show them sanitary napkins? It’s embarrassing for me.”
Preeti, who lost one of her legs after being run over by a truck when she was five years old and moves around on crutches, is currently not engaged in the advocacy work of the disabled people’s organisation she is involved with, as her studies keep her busy. She is putting more efforts in her studies as the lockdown has made her realise the importance of college and a degree.
Interview by Tushita Mukherjee, project officer, Sightsavers
The COVID-19 pandemic is disproportionately affecting people with disabilities for a variety of reasons, including a lack of accessible information and services, lack of access to personal care requirements, difficulties in meeting social distancing guidelines and being deprioritised when it comes to accessing health care. This must be urgently addressed by the international community and people with disabilities prioritised in the global response to COVID-19.