Taking shame out of periods for women with disabilities

In Summary

• Lizzie and her team began to write a new narrative, creating positive content featuring women with disabilities, and sharing it on social media.
• This-Ability is also developing a USSD platform to provide accessible sexual and reproductive health information for women and girls with disabilities.

When Lizzie Kiama took the photograph that would be on everyone’s lips soon after, she thought, “maybe this will trigger a little conversation”.

The photo would go on a billboard, and it would not be the sort of billboard people pass without noticing it. People would stop and look.

And stop and look they did when they saw the image that one advertising agency had declined to print for being too graphic, then turned to social media with scathing emotion.

Lizzie, the founder and managing director of This-Ability Trust — the organisation that put up the billboard — was in Addis Ababa in Ethiopia, attending a conference on gender equality when all this was happening. Her phone buzzed incessantly.

The following day, she woke up with a migraine. Even though she and her team had set out to spark a conversation about period-shame among women and girls with disabilities, they didn’t see it coming as fast and furious as it did.

Why did they have to use a disabled girl? Why was there blood on her face? Did men come up with this concept? Were women with disabilities consulted?

FEEDING ON CONTROVERSY

It was a nerve-wracking time for Lizzie and her team, but they were happy with the feedback.

“I’d rather people talk about us from a controversial standpoint than ignore us,” says the 40-year-old.

As a woman with disability, being ignored is a reality Lizzie has experienced one too many times.

She experienced it this October at the African Union headquarters in Addis Ababa, where she was participating in a meeting on gender equality.

Lizzie was set to moderate a panel, but the ramp leading to the entrance of the room where the session was taking place was not wheelchair-friendly — it was steep, slippery and lacked guard rails.

Other women with disabilities were pushed up, but Lizzie protested the lack of safety considerations in the design of the ramp and refused to be pushed up.

She advocated for a ramp that wheelchair users could go up independently and safely.

“My protests were ignored. I called the organisers, told them I couldn’t access the room and asked them what they would do (for instance, move the session to an accessible room), but they were willing to go on with the meeting without addressing the accessibility issue,” she recalls.

START CONVERSATIONS

It took a tragedy for people to take notice. Amid Lizzie’s protests, one man insisted that he could go up without a problem because his wheelchair was motorised.

But when he got to the top, he fell off and hit his head on the concrete. He was rushed to hospital in an ambulance.

“I don’t know what complications he got … if he hadn’t fallen, people were willing to go on with the meeting as if everything was fine, but these (disability issues) are life and death issues. We don’t turn off being disabled!”

Often, Lizzie sees how people overlook disability, which is why her mission is to advance the rights and inclusion of women with disabilities and to make them visible.

“We want to use advertising to create controversy so that people can begin to have these conversations. People know, but they don’t want to be uncomfortable. We need to make them uncomfortable because we have talked and pushed and advocated and nothing gets done,” she says.

Lizzie first lost mobility in a car accident when she was 18 years old, but by the time she was 19, she was back on her feet again.

Twelve years later, under the weight of pregnancy-related complications, she lost mobility again after the birth of her daughter.

The second time round, Lizzie resisted using a wheelchair and crutches and her husband worried that cooped up in the house, nursing a newborn and moping would send Lizzie into post-partum depression.

UNDERSTANDING DISABILITY

When Lizzie gave in to his coaxing and ventured out on crutches, people stared at her.

She wanted to retreat to the safety of home, but her mother’s words kept her going. “My mother always said that the accident did not happen to me for no reason. That I should own it and figure out what I was supposed to do with it,” she remembers.

She did just that, gobbling up everything she could find to help her understand disability and figure out how she could make a difference.

Lizzie also went back to school to learn about disability and volunteered at the National Council for Persons with Disabilities, where she came face to face with the difficulties Kenyans with disabilities face in the world of work.

Afterwards, she started This-Ability Consulting in 2012, to advance the rights of women with disabilities, having noticed that there were hardly any organisations serving the needs of women like herself.

Initially, Lizzie set out to figure out why businesses were not employing persons with disabilities but branched into a different path while organising wheelchair rugby sessions for women with disabilities and women without disabilities.

During these sessions, the women would also get breast and cervical cancer screening, contraceptives and other sexual and reproductive health information and services.

WORKING POLICIES

This piqued Lizzie’s interest in sexual and reproductive health rights for women with disabilities.

“I wanted to explore why women with disabilities were not included and why policies were not representative of their needs,” she says.

“There is no gender lens in the disability sector, so the specific realities and needs of women with disabilities are not highlighted or addressed.

We can’t relegate issues of women with disabilities to a department of social protection. The Ministry of Gender needs to come out strongly on our issues, otherwise we fall through the cracks,” explains Lizzie, adding that women with disabilities are ignored because there is no specific language in Kenya’s policies and laws that speaks to women and girls with disabilities.

Lizzie also began to explore how media portrays women with disabilities and sought to use advertising and marketing knowledge and skills from her business degree to advance the rights of women and girls with disabilities.

“It is always a sad story. Women with disabilities are portrayed as victims or living in poverty. This narrative is continuously pushed by media, which is where the public gets its education on disability,” she says.

Lizzie and her team began to write a new narrative, creating positive content featuring women with disabilities, and sharing it on social media.

PERIOD-SHAMING

Last year, they put up a campaign on disability and sexuality using images modelled by women with different disabilities (including Lizzie).

Then this September when she saw in the news that a girl in Bomet had killed herself for being shamed for her period, she felt the need to be even bolder.

This informed the “end period shame” campaign, characterised by the controversial billboard.

“Girls with disabilities are not included in conversations on menstrual health and they will not be included if we continue to play it safe. We need to have a more in-your-face conversation about it,” she says.

The photographs were taken at the AIC Kajiado Child Care Centre for boys and girls with disabilities.

A health worker took the girls through the realities of menstruation, while sanitary towel manufacturers in attendance — Confidence and Genesis — got to see first-hand the difficulties girls with disabilities have using products that are not designed with disability in mind.

“You assume everyone would be able to open a packet of pads or to align a pad on a panty and wear it. What if you don’t have fingers? What about women and girls with different impairments and needs?

It is an opportunity to conduct market research with the disability community and to begin to innovate and design products with disability in mind. These products will be used by the larger community,” Lizzie explains.

PUBLIC UPROAR

Once the session with the girls was over, the collective energy of the group had dipped, and Lizzie wanted to postpone the photo shoot.

However, the girls who had already given their consent, were keen on having the photographs taken that evening.

Lizzie and her team used glycerine and food colouring to create blood and smeared it on the face of the girl on the billboard.

“I kept asking her if she was okay and comfortable and she reassured me that she was. All the girls wanted to participate but we only chose four images for the billboards. The rest will be printed for use in our exhibitions,” says Lizzie, who is also a mother of an eight-year-old girl.

When the billboards went up at the end of October, there was uproar. For the most part, the consensus was that the billboard was distasteful and shouldn’t have been put up.

People asked: 'Why did they have to use a girl with disability?' Lizzie wonders, 'why not?'

“The idea that girls with disabilities were taken advantage of … that was never the case. We always seek consent and the process is participatory.

This view exposed the lens with which society looks at us. They see us as individuals who need goodwill and benevolence, as people who cannot be assertive and take leadership on issues,” she says.

about it. It’s easy to sweep it under the carpet.

UNCONSCIOUS BIAS

However, the goal of the campaign — to get people talking about menstrual challenges of women and girls with disability — had been met.

“Disability issues have been talked about within disability circles and nothing gets done because we are preaching to the choir. The comments showed us why things were not advancing. It is because of how people perceive disability. They don’t want to see it or talk

“Sometimes you have to get people’s attention first. We would not have been able to get this amount of useful engagement if we had put a safe image.

People with a large following, who normally don’t talk about disability, picked the story and talked about it. And within those conversations, one or two people saw the issue and began to think about how a girl with disabilities would use a menstrual cup,” says Lizzie, adding that people need to see more content of the realities of people with disabilities in their day to day life.

Public commentary on the campaign also brought out the unconscious bias in public perception of disability.

“These are the same people who design policies and implement programmes,” says Lizzie, adding that it is the reason why years after the Disability Act was passed in 2003 the policies are not being felt.

“This unconscious bias shows up in healthcare, where even doctors, as educated as they are, ask a woman with disability who is pregnant, ‘Why would you want to add to your issues when you already have so many problems? Why would you allow this to happen to you?' Society looks at women with disabilities as asexual and you find families colluding with doctors to sterilise women, particularly women and girls with intellectual disabilities.”

SEXUAL VIOLENCE

Lizzie, particularly, worries about these women and girls with intellectual disabilities, who often suffer sexual violation while the perpetrators walk free to violate the women and girls over and over.

“These cases are settled with the chief after a family discussion. Money changes hands and the case is dismissed. It becomes the woman’s problem and she is sterilised to prevent pregnancy, but does that protect her from repeated sexual violation or HIV? We are trying to ensure that communities understand legal processes,” says Lizzie.

For Lizzie and her team at This-Ability Trust, the next step is to use the responses to the “end period shame” campaign to reframe the narrative on disability.

This-Ability is also developing a USSD platform to provide accessible sexual and reproductive health information for women and girls with disabilities.

“The platform will share tips on self-care, such as how to check breasts for lumps or how to tell which vaginal fluid smell indicates that something is wrong.

These are tips that women with disabilities don’t usually have access to because the information is not accessible; for instance, text-to-speech conversion for women who are blind or simpler messages for women and girls with disabilities,” says Lizzie, adding that the platform will also address the privacy and confidentiality challenges women with disabilities face while seeking information on sexual and reproductive health.