World Spina Bifida and Hydrocephalus Day: Elevate Your Voice!
The Annual Global Conference for the World Spina Bifida and Hydrocephalus Day 2022 (WSBHD22) successfully took place on October 25th 2022 on this year’s theme Elevate your Voice!
This year, the World Spina Bifida and Hydrocephalus Day 2022 was a special highlight as it marked the 10th edition to raise global awareness together with YOU. It was very exciting to see the many colourful activities taking place in countries all around the world to “Elevate Your Voice” (see the overview of activities here).
The first speaker, Dr. Yean Koon Chan from the organisation SIBIAM in Malaysia covered the theme ‘Elevate Your Voice – My Voice Matters’. Based on this theme, SIBIAM organised a colouring contest for children of different age groups as many children were not able to express themselves verbally. However, through colouring and creativity they were able to share their voices more easily. Dr. Chan acknowledged all of the contributions of persons with SBH by sharing their stories and drawings. Dr. Chan also highlighted the judges for the colouring contest who took part in choosing the final winner, two artists who are close to the persons with disability community. For adults above 18, Dr. Chan shared how SIBIAM also organised a writing contest with the theme ‘Inclusion is the Solution’ and presented some of the entries that they received. One example of a contribution came from a person with SBH, who expressed what inclusion means to them:
Inclusion is defined as “the action or state of including or of being included within a group or structure”. Another definition for inclusion is “the practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized, such as those who have physical disabilities”. To me, inclusion means being included or being a part of something
– Narresh, Spina Bifida Person
Dr. Chan also showed a video testimonial of a SIBIAM member Aveena Devi who is a visual artist and advocate for persons with SBH, highlighting how she struggled to be recognised as an artist but later started to see opportunities of people sharing their own stories surrounded by her art; realising that their challenges are simply different from hers.
Dr. Aziza Elnaeema, from the organisation Spina Bifida Federal Association, Sudan organised a regional meeting focusing on the theme Elevate your Voice to Rehabilitation for a Creative Life.
Giulia Bizzotto from ASBI Italy, the third speaker, shared how ASBI has decided to focus on the theme ‘Elevate Your Voice to the Path Towards Independent Living’, focusing on autonomy and independent living. Giulia Bizzotto mentioned the four side events that were organised by ASBI and shared some aspects during these events. She highlighted how during these events the discussion was focused on the need for transitional care and multidisciplinary teams to treat persons with SBH as a whole, the need for a Spina Bifida registry as a best practice, the importance of autonomy of persons with SBH, and the last and upcoming side event on disability and sports.
The fourth and last speaker, Sonia Uribe took the virtual stage and talked on the theme of Fundación Mónica Uribe Por Amor Colombia ‘Elevate Your Voice to Independent Living and Autonomy.’ Sonia Uribe shared some information about the foundation in Colombia and how they work towards inclusion and social autonomy on a daily basis. She highlighted the importance of empowering persons with SBH as well as their families, using sports as a tool for improving lives of the children, the impact of the elderly community on the lives of young children, and for persons with SBH to have the possibility to share feelings. Sonia also emphasised how every individual have to know themselves and work towards being owners of their condition:
“They have to be empowered and they are only ones who can do it”
– Sonia Uribe
Then Sonia Uribe gave the space to Maria Cecilia Agudelo to share her testimony as a person with SBH. Maria Cecilia Agudelo has a PhD in Molecular Biology and is currently a researcher in the Infection and Cancer Group of the Faculty of Medicine of the University of Antioquia. She shared how the foundation Fundación Mónica Uribe Por Amor Colombia formed an essential part of her life and supported her and her mother in better understanding her condition. Maria Cecilia Agudelo has an independent life and has achieved her personal and academic goals due to all of the support she has received from the people she has met at the foundation. Her mindset is that with discipline, anything is possible.
“There are no barriers or limits to a great discipline and willingness”
– Maria Cecilia Agudelo
Last but not least, the winners of the WSBHD22 Talent Show are:
1st place: Juan Felipe González
2nd place: Jesús Daniel Bareiro
3rd place: Kelly Vanessa Zuluaga Urrego
All Talent Show contributions can be seen on the WSBHD official website page here.
The WSBHD22 Conference can be re-watched here.
Visit the World Spina Bifida and Hydrocephalus Day official website here:
