October 25, 2018

Do you know what spina bifida and hydrocephalus are? If you don’t, this is the perfect opportunity to learn, and if you do know these conditions, this will still be interest to you.

Our member, the International Federation for Spina Bifida and Hydrocephalus (IF) aimed to collect 25 testimonies to be published from 1-25 October for World Spina Bifida and Hydrocephalus Day #WSBHD18. The goal was more than doubled! They received over 60 stories from people with spina bifida and hydrocephalus (SBH) and their families, who are the best placed to talk about SBH throughout the lifespan. 

The testimonies come from all the continents and you will find parents highlighting the importance of accessibility at schools and how helpful peer-to-peer support is. Young people with SBH are also represented since many youngsters sent brave testimonies about their experiences with discrimination, bullying and struggling with self-confidence, as well as their achievements, hobbies and interests in life. Adults and adolescents openly share how they manage their bowel and bladder continence and how they feel about their sexuality and relationships.

It is key to raise the voice of people with disabilities and remind policy makers and governments that ‘nothing about us without us’ should be a reality. 

Do not hesitate to visit the IF Facebook pageTwitter account and YouTube playlist to read and watch more testimonies. Check the WSBHD social media toolkit and feel free to share the stories and give your feedback!

For more information, visit the WSBHD website or contact Carmen Clemente at carmen.clemente [at] ifglobal.org

  •   June 6, 2019 to June 8, 2019

    The Government of Argentina Republic, the International Alliance of Disability (IDA) and the Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their...