In February, I co-authored a book titled “Invisible to Visible: Women Entrepreneurs with Disability, Stories from India” as part of my project. The book was launched at Zero Project Conference in Austria by the CEO of my Host Organization. While I was scripting the stories of struggle and success of women with disabilities, a journalist friend sent me this very powerful photo-essay. I was moved by the first picture. I started thinking about the challenges and how disability makes things worse in precarious times.
Women have equal rights enshrined in the Indian Constitution. The question that begs our attention is why can’t the women with disabilities reclaim their rightful space in India’s democracy? They have a right to exercise their agency and follow their true aspirations.
Four years ago, in one of the strictest lockdowns in the world, when the tiny microbe caged the globe, women found themselves excluded and forgotten. The exacerbated struggles or the pandemic pain they endured has been succinctly highlighted by 21 women with disabilities in this report. Last month, we celebrated international women’s day. But what percentage of women with disabilities were invited to speak on their reproductive rights? How many panelists talked about how women with disabilities are affected by wars/conflict? Who takes care of the mental health of disabled girls? How do women/girls with disabilities navigate the daily struggles in schools, colleges and even “not-so-friendly” workplaces? How many speakers discussed their role in peace-building and gender-equality? The uncomfortable answer in your hindsight is a reminder to reflect on how we have robbed off their right to live. Sounds little indignant. No? But it is what it is. Let me elucidate.
When women with disabilities work, they often experience unequal hiring and promotion standards, unequal access to training and retraining, unequal access to credit and other productive resources, unequal pay for equal work and occupational segregation, and they rarely participate in economic decision-making. As per the last census done in 2011, India has 11.8 million women with disabilities who experience considerable challenges, discrimination, isolation and marginalization in their routine lives. “They are not considered to be “woman enough” and routinely discriminated against or abused and harassed.” says Nidhi Goyal, Founder and Executive Director of Rising Flame ,a non-profit working on the human rights of people with disabilities.
India is a signatory to the United Nations Sustainable Development Goals (UNSDG), Convention on the rights of PWD’s ,has passed Mental Healthcare Law 2017 and RPwD Act 2016.Despite the multitude of laws in place to support women with disabilities, the ground reality is different from what is written on papers. We can collectively change how indifferently things are moving for PwD’s by being highly sensitive about their rights.
Bodily Autonomy Violated
In India, a rape is reported after every 16 minutes as per NCRB. When half of the population feels worried about their safety, there are no surprises to guess why women with disabilities are considered a burden. Many women with disabilities are advised first, pushed finally, to undergo surgical procedures under the pretext of convenience and physical safety, violating their bodily autonomy and consent over their sexual and reproductive rights, often by those closest to them.
Women with Disabilities India Network (WWDIN), a cross disability network run by women with disabilities, collected testimonies of women, many of them minors, who were forced to undergo hysterectomies or sterilisations, contraception and abortions. (Hysterectomy is a procedure to surgically remove uterus. Women don’t get pregnant or menstruate (have periods post hysterectomy).
Geetika Mantri writes in her Behanbox report that the stigma and lack of disability-friendly infrastructure isolates families and caregivers, which is further exacerbated by socio-economic conditions. 69% of disabled population in India lives in rural areas according to the 2011 census with inadequate support, fewer resources and information.
It is our collective responsibility to sensitize parents of intellectually disabled girls about training their wards on how to manage period process. Without consent, some caregivers resort to tubal ligation, a surgical procedure where the fallopian tubes are either blocked or removed, is used to stop pregnancy permanently. It is a human rights violation. But these actions are silently pushing the community to the margins. Have you ever paused to think about the silent tyranny disabled women go through? Girls with intellectual disabilities need to be taught in a language that they understand, such as with pictures and images if not words, suggests Bahni Bhattacharyya Mandal, a Kolkata-based special educator.
Imagine a deaf and mute adolescent lady taken to a clinic without her consent and her uterus is removed. Aren’t you robbing her off of her sexuality? Why would you do that? Just to get rid of her periods? It feels very uncomfortable to read. No? That is why activists who work around disabilities always stress on empathy. Unless you put yourself in the shoes of disabled, you may never understand how they operate in this cruel world.
Only Non-disabled are custodians of motherhood?
Meet Jeeja Ghosh, who scripted history by becoming India’s first cerebral palsy afflicted adoptive mom. But it was not a walk in the park. Cerebral palsy affects your ability to maintain balance and posture. In Ghasipur Odisha, when she went to an adoption centre, the officials laughed at her idea and binned her application. Since the society and the state doesn’t feel women with disabilities can be good mothers, harsh judgements followed.
The problem is rooted in ableism and stereotype since we are programmed to believe that mothers nurture and care and women with disabilities need care so they cannot be mothers. This perception needs to be changed. Another very important issue I want to highlight is the burnout in autistic girls. According to a US-based non-profit Child Mind Institute, exhaustion in autism spectrum disorder girls often goes undiagnosed, because the symptoms are masked and these girls are overlooked. These women question the ‘ideal idea of a mother’ who always remains available and nurturing.
Another important policy shift I wish to happen is to make the restrooms accessible in public spaces. You may have noticed that except at major airports, even washrooms are not designed for women with wheelchair. There is a growing demand for separate accessible washrooms in schools, colleges, universities, metros and workplaces. Government has to seriously think about investing in empowering disabilities. The real empowerment is to provide them platforms so that they can be job providers instead of being dependent on alms.
Women with disabilities often experience harassment under the guise of assistance, especially at the time of boarding or disembarking a vehicle. In a disabled unfriendly world, inaccessibility makes disabled vulnerable to abuse. Strangers touch your shoulder or body sans consent. Ola Mobility Institute, a policy think-tank working at the intersection of mobility innovation and public good, in November 2021 highlighted these pressing issues in its hair-raising report.
In April 2021, India’s Apex court noted that “women with disabilities, who inhabit a world designed for the able-bodied, are often perceived as ‘soft targets’ and ‘easy victims’ for the commission of sexual violence”. Earlier this year at International Purple Fest in Goa, in one of the post-lunch sessions, I asked a 20-something woman how she spends time at home. “I am the most isolated person on earth.” She told me and stressed that she entertains herself by watching reels because people don’t befriend her. When they are not made to feel safe in public spaces, they will obviously isolate themselves.
Relationships and Romance
To respect her privacy, let’s call her Aayena. She is a 26 year old disabled woman. She shares life’s painful anecdote with me.
“I liked someone. I was so grateful that he equally liked me. We went out twice but……” After a long lull, “People laughed at me, I faced ugly stares and awkward glances, people were so mean, and it was my first date.”
Somehow her significant other made her feel better by booking a private space. It vaporized her worries for a time being. But she was not accepted by boy’s family as a would-be daughter-in-law for her disability. The relationship ended on a sour note. Aayena’s is not an isolated incident. This is a familiar experience of many women with disabilities. In India, even sexuality and pleasure is considered the domain of able-bodied and disabled find themselves at the receiving end.
Renu Addlakha and Mahima Nayar, two noted scholars in this paper conclude that disabled persons are considered sexless and unattractive and not fit for intimacy. Unless and until we don’t give enough attention to these details of the disabled, we can never dream of having a just and equal society. Disabled activist Malini Chib writes, “Disability does not hamper a person’s emotional need to be touched and loved on an emotional and physical plane just like everyone else. Our sexual organs are not damaged or affected, and hence we do long for and are able to enjoy pleasurable sexual experience.” So, the women with disabilities are not considered ‘feminine enough’ to be married or dated due to so called social norms and popular culture. Invisibilizing the sexuality of disabled persons is an everyday challenge for them. But do you care?
In this beautifully woven blog,disability rights activist Abha Khetarpal Maurya writes that the unrealistic standards of beauty are destroying the body image of people with disabilities. The dark reality is that global cosmetic industry is projected to grow USD 393.75 billion in 2024 to USD 758.05 billion by 2032. Fakery is not being you and truth is that disabled persons have no masks to fake.
Pyaar Plus is a sexuality toolkit developed by Point of View, a non-profit that focuses on intersections of disability, sexuality, and technology. The welfare agency noted that people are shocked to see that persons with disabilities also sign up for the dating apps!
Neglected and Abandoned Elderly Women with Disabilities
This research by T Sathya and R Premakumar finds that elderly disabled women are at a greater risk of abuse and those with more than two disabilities are three times more likely to experience abuse than men. Last month The Diplomat reported the plight of India’s older women and how they have been pushed to the wall. In case of disabilities, the women face a double whammy. While India has a social security policy for the elderlies, more can be done to address specific vulnerabilities among older women with disabilities. So, this is the reason we need persons with disabilities in policy-framing and decision making bodies so that we can specify the needs and tailor the solutions.
Thank you so much for reading this longish piece. I cling to the hope that things will get better for people with disabilities.
