“We need to equalize the status for women and young people with disabilities”

Amanda McRae is the Director of U.N. Advocacy with Women Enabled International, which helped produce the 2018 Guidelines for Providing Rights-Based and Gender-Responsive Services to Address Gender-Based Violence and Sexual and Reproductive Health and Rights for Women and Young Persons with Disabilities. During the pandmeic, she has been expanding this research by strengthening an empowered digital network that is driving change in the way governments deliver more inclusive services.

As the pandemic worsened, Amanda and her colleagues wanted to know how COVID-19 was impacting persons with disabilities and particularly women, young people and gender non-conforming persons with disabilities. Building on their work from 2018, the goal was to use the guidelines as a framework for understanding how the pandemic might particularly impact women, girls, and gender non-conforming persons with disabilities.

“This project was a way to document the lived experiences of women, young people and gender non-conforming persons with disabilities during this crisis,” Amanda says. “The goal was to create targeted resources for states,  healthcare providers, gender-based violence service providers and women with disabilities themselves to apply human rights standards to crisis response.”

“This project was a way to document the lived experiences of women, young people and gender non-conforming persons with disabilities during this crisis."

Amanda says the rights and needs of people with disabilities are often overlooked in a crisis. “Women and persons with disabilities are frequently the last people to be thought about during normal times,” she says. “During crises,although there is guidance on including persons with disabilities and there have been human rights treaties around for decades to guide what the state should be doing in terms of ensuring rights during crises, this group just wasn't a priority.”

She says it has helped highlight the gaps in systems around the world. “This crisis has really revealed just how left behind these groups were,” she says.

Amanda and her colleagues were getting reports of women and young people with disabilities no longer having access to their support services, their communities, or their jobs. She personally experienced the challenges of coping with a pandemic and living with a disability. “New York City was the global epicenter of the crisis [for a time] and personally my family had to relocate,” she says. “ In order for my husband and I to continue to work and to get support taking care of our children, we were out of our home for three and a half months.”

She says her work life was impacted by that dislocation and the lack of access to her normal working structure and schedule. “I had my children running around me, I was working on a laptop. And as a person with a visual impairment who needs a large screen and some privacy to concentrate, that was really hard.” she says. “I could only imagine what other women and young people with disabilities were experiencing in other parts of the world.”

Women Enabled International launched an online survey of women and young people with disabilities to get a sense of what that lived experience was. The report highlighted initial findings and was the basis for the recent collaboration with UNFPA. Amanda says she knows that the online survey had limitations due to the digital inequality of poverty and social norms. “People with disabilities are one of the groups that suffer most from the digital divide because of poverty and lack of access to the internet,” she says. “One thing we tried to do was tap into the community of advocates locally who are in touch with women with disabilities and may have more access to virtual platforms, so that we could still get a sense of experiences from the ground."

“People with disabilities are one of the groups that suffer most from the digital divide because of poverty and lack of access to the internet."

She says the experiences that they were hearing from on the ground helped them incorporate voices from different perspectives and find solutions. “We provided stipends to everyone who participated in the consultations to cover things like internet costs, phone data costs. We hoped that if they did want to share their experiences, they had the means to do so.”

Amanda and her colleagues partnered with several other organizations of women with disabilities to conduct the research, in turn providing much needed support to other women-led organizations or persons with disabilities and giving them the financial resources and the tools to support women with disabilities on the ground during the pandemic. She says the network they built connected them to the complex challenges people were facing. "'There was a young deaf woman from Gau Island in Fiji who was pregnant and went into labor," she says. "Because she could not communicate with authorities, the woman had to get permission from her mother to travel to the hospital, a process that took more than 15 hours. In the end, the young woman delivered her baby in the back of a car, and temporarily lost consciousness during the ordeal."

Amanda says she sees value in the new connectivity of a global network of disability activists. “The change in the way that we do business over the last year and a half has brought women with disabilities from all around the world together in a way that we have not been able to do before.”

 She says they are able to share experiences and collaborate more closely. “It's the same connection with a colleague in India as it is with a colleague in Brooklyn,” she says. “It is strange but it's actually wonderful.”

To reach gender-nonconforming persons and hear about their lived experiences Amanda organized virtual consultations that were inclusive by design. Statistics indicate that even during non-crisis times women and young people with disabilities are three times more likely to experience violence including gender-based violence and violence based on their disability status. “They face unique forms of violence,” Amanda says. “Withholding needed assistance or medication, people with disabilities disproportionately experience forced sterilization, forced abortion or sexual violence. It has been exacerbated with the COVID-19 crisis.”

“They face unique forms of violence; withholding needed assistance or medication, people with disabilities disproportionately experience forced sterilization, forced abortion or sexual violence.”

Before the crisis, women and young people with disabilities may have had access to support services outside of their homes. But with lockdown measures and restrictions on movement, that support evaporated.

“Family members suddenly had to become caretakers,” Amanda says. “Some persons with disabilities had to move back in with the family when they had lived independently. This opened them up to even more violence.”

Amanada says the crisis has highlighted global gaps in police capacity to respond to women and girls with disabilities who survive violence and the urgent need for more mental health support.  “When there is a physical health crisis happening, mental health is not at the top of anyone's agenda,” she says. Amanda says women and girls with disabilities reported mental health concerns on their own from the isolation that their disabilities of precipitated during this crisis.

“I hope that one thing that will come out of this crisis is a recognition of the value of mental health services,” she says.

Amanda emphasises that women and young persons with disabilities are not a small minority and all governments should use inclusive planning to uphold their human rights. “Persons with disabilities are the largest minority worldwide,” she says. “Fifteen percent of the global population and women and girls with disabilities are one-in-five women around the world.  To ignore us means to ignore a fifth of all women.”

“Persons with disabilities are the largest minority worldwide.”

She says the crisis revealed is the lack of implementation of human rights standards around the world. Amanda says the economic crisis has exposed the scale of the social crisis and deepened the health crisis for large parts of the population.

As countries recover from the crisis and prioritize where their funding is allocated,  Amanda hopes a human rights lens informs those critical recovery decisions.  She says a good place to start is investing in the network of women who are strengthening the movement for dignity. “There's also a whole new generation of leaders emerging from this field of women with disabilities,” Amanda says. “We're seeing a burgeoning women with disabilities movement globally, regionally and nationally in many contexts.”

She says there is no silver-lining from this crisis, but she is inspired by the solidarity between women and young people with disabilities worldwide. “Learning from each other and being able to use digital means to bridge borders and gaps that have kept us from making progress. I think that is something to take with us and move beyond this crisis.”

“There's a whole new generation of leaders emerging from this field of women with disabilities."

Amanda says equality and inclusion are needed on a global scale. “We need to equalize the status for women and young people with disabilities,” she says “We need to elevate their voices globally.”

She says she is sometimes frustrated at the slowness in progress in the movement for disability rights, but she is hopeful that there is momentum to move faster. "Rome wasn't built in a day,” she says. “But it was built eventually, and that's what we're hoping for for women and young people with disabilities.”

Learn more

Guaranteeing Rights at the Intersection of Gender and Disability in the COVID-19 Response

Guidelines for Providing Rights-Based and Gender-Responsive Services to Address Gender-Based Violence and Sexual and Reproductive Health and Rights for Women and Young Persons with Disabilities