IF Online Open Discussions on Equality, Motherhood and Sexuality


During the month of March, IF joined the world to celebrate and empower women. All over the world, women spoke up, shared their stories and took to social media to raise awareness about gender equality. IF dedicated this month to empower women with SBH and for this occasion three open discussions were organised online over three days, to speak about three important topics relevant to women with SBH. Equality – Motherhood – Sexuality. 

Because of COVID-19, we had to adapt and organise this activity in a digital format, IF had the chance to greet “e-ttendes” from all over the world. This format allows IF to have the opportunity to see diversity in its activities and during those open discussions IF had the occasion to see different backgrounds and different time zones participating.

The first session took place on March 23rd, in which three speakers from different regions shared their testimonies and life experiences on the topic of equality. We had the honour to have Ana Sofia Batres Morales and Vivian Lucía Rivera Marroquín (member of the Guatemala Association of Spina Bifida, in Guatemala) and Anđela Radovanović (member of the Association of Youth with Disabilities of Montenegro, in Montenegro). An interview session was organised to have a better understanding of the current situation in their countries.  They shared with us their experiences on different aspects of the inequality they are facing in their lives. 

The second open discussion was on motherhood and took place on March 24th in which two beautiful testimonies were shared. Dilek Nalçakan (member of Turkish Spina Bifida Association, in Turkey), a mother to a child with spina bifida shared with us her daily life. How she faced her son’s condition from the day he was born until his adulthood. She gave us a strong message to encourage women in the same situation not to hide and to not fear their child’s future. Followed by Albena Marinova (member of Spina bifida and hydrocephalus-Bulgaria, in Bulgaria) who shared with us a live testimony of being a mother with spina bifida and what is her daily life with her 2 years old son. This beautiful testimony was followed by Vivian Lucía Rivera Marroquín interview and Anđela Radovanović’s testimony, not being a mother yet, they wanted to give us their perspective on motherhood. Anđela Radovanović spoke up about the lack of support services and the barriers that women with disabilities face and the resulting fear of pregnancy and motherhood.

During the third open discussion, as an introduction IF launched and shared the report “Insights from Focus Group Discussions on Sexual Health between Individuals with Spina Bifida and or Hydrocephalus” with the participants. This report builds upon an earlier survey conducted by the IF Task Force SBH & Sexual Health in 2019 to break the taboo on the important topic of sexual health for persons with disabilities. After an impressive recorded testimony from Anđela Radovanović, to raise awareness about the misconception people have regarding sexuality and women with disabilities, Papatya Alkan Genca, (board member of Turkish Spina Bifida Association and IF’s board member), gave us an insight of being a woman with spina bifida and being a woman with spina bifida living in Turkey. She wanted to highlight the taboo of this topic in her culture and what she had faced during her life and the stigma she encountered. 

Papatya Alkan Genca’s video testimony, watch here

IF really saw the importance of giving the opportunity to women to speak. Taboo topics were mentioned and those powerful messages, testimonies and life experiences sharing had a positive impact on our participants. Many were touched by those truthful speeches, including IF. We look forward to organizing such wonderful events in the future. 

IF wants to thank all of its speakers for having been able to give powerful messages during those three days. And thank its “e-ttendees” to be present, assist and participate in those open discussions.