World Spina Bifida and Hydrocephalus Day 2023 Conference: Accessibility for All!
World Spina Bifida and Hydrocephalus Day 2023 Conference Accessibility4All
October 25 2023
The Annual Global Conference for the World Spina Bifida and Hydrocephalus Day 2023 (WSBHD23) successfully took place on October 25th 2023 on this year’s theme Accessibility for All!
The WSBHD23 Conference brought together global communities to raise awareness about Spina Bifida and Hydrocephalus. IF members from the regions Africa, Americas, Asia-Pacific, and Europe shared their vision of “Accessibility4All” for this year’s WSBHD23!
The panellists of the WSBHD23 Conference included:
- Kevin O’Donnell, chair working Group Ageing: Accessibility in Focus of Ageing
- Elena Zappoli, chair RELAEBHI: Accessibility to Prevention and Care in LATAM
- Ajok & Nebiyat, chairs regional meeting Africa: Accessibility to Multidisciplinary Care in Africa
- Laura, chair International Youth Group: Accessibility to Independent Living
- Dr Santosh Karmarkar, chair regional meeting Asia-Pacific: Accessibility issues for persons with spina bifida – South Asian perspectives
- Papatya Alkan Genca, Turkish Spina Bifida Association: Accessibility to Healthy Pregnancies in Turkey
- Cato Lie & Rasmus Isaksson, chairs regional meeting Europe: Current status on Accessibility in Europe
Accessibility in Focus of Ageing
In his compelling presentation, Kevin gave a brief overview of the Working Group on Ageing with SBH. This Working Group gathers individuals with Spina Bifida and Hydrocephalus and organises monthly meetings to discuss their activities. One of these activities included their recently published report “Ageing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the World”. This report delves into the practices, strategies, and approaches adopted on a country level to support individuals with SBH as they navigate the challenges associated with the ageing process.
This report led to the organisation of a webinar on October 1st, in commemoration of the International Day of Older Persons, as well as the world’s Spina Bifida and Hydrocephalus awareness month. This webinar was a great opportunity to get an overview of different needs regarding accessibility and to explore different solutions together. Upon reflection on the webinar, Kevin expressed his delight in learning about the specific needs and desires of the ageing SBH community. The clear focus on addressing distinct challenges within the ageing population sets a promising course for the future initiatives of the IF Working Group on Ageing with SBH.
Accessibility to Prevention and Care in Latin America
In her speech, Elena emphasised prevention and rehabilitation as key priorities in the region. The current situation in Latin America is characterised by lack of access to basic services and food insecurity, as well as the fragility of health, social protection systems and especially the lack of rehabilitation. That is why RELAEBHI, the Latin American Network, is dedicated to expanding and defining objectives and advocacy initiatives for the construction of a strategic vision and regional strengthening. She shared that RELAEBHI brings together leaders and organisations dedicated to SBH in the region, for research, dissemination, exchange, education and strengthening of programs and actions aimed at improving the quality of life of people with SBH and their families. Lastly, Elena shared the plans for organising the next meeting of the Latin American network in 2024.
Accessibility to Multidisciplinary Care in Africa & Independent Living
As a first part of this presentation, we had the pleasure of listening to the amazing story of Angel Wanjiru Ngugi, a 16 year-old singer with hydrocephalus from Kenya. Reflecting on the outcomes of their WSBHD23 side event in Africa, Ajok and Nebiyat shed light on the persistent challenges faced by individuals in Uganda, Nigeria, and Ethiopia. They highlighted the fact these countries still do not meet their accessibility needs. Persons with SBH from these places face inadequate access to education and employment, as specialised facilities are limited. They also stressed on the need for rehabilitation, as in Ethiopia there is a high rate of child mortality due to the lack of care.
Amongst the main achievements in this region is the progress made on food fortification and they hope that in four years, the number of persons born with SBH will reduce. Another good news is that their raising awareness strategies have brought up a positive impact in the access to the treatments for persons with SBH.
Ajok and Nebiyat’s vision of accessibility are mostly on prevention and accessibility for health with a focus on multidisciplinary care. There are issues in the implementation of human rights for persons with SBH in the accessibility area. Additionally, advocacy is necessary to seek for an independent living, from healthcare, education and employment.
Lastly, Ajok and Nebiyat introduced the IF International Youth Group SBH. This group aims to gather young persons with SBH together from all around the world and work together in addressing important issues relevant for youth with SBH around the world. One of their pertinent activities included their upcoming WSBHD23 side event especially aimed towards the youth. Thus, Ajok and Nebiyat extended this invitation to the youth community to join their event with a focus on Accessibility to Independent Living.
Accessibility Issues for Persons with Spina Bifida – South Asian Perspectives
In this part of the presentation, the upcoming WSBHD23 side event for Asia-Pacific with the theme ‘Accessibility Issues for Persons with Spina Bifida – South Asian Perspectives’ was highlighted. Organised by Spina Bifida Foundation India, this event aimed to shed light on different accessibility topics, such as accessibility to public transport, education, and healthcare.
Accessibility to Healthy Pregnancies in Turkey
In her talk, Papatya highlighted the symposium on accessibility organised with UNICEF Turkey. In this symposium, different stakeholders were gathered such as the Ministry of Family and Social Affairs, the Ministry of Agriculture, NGOs, members from her own organisation and Dr Sylvia Roozen – IF Secretary General.
This symposium focused on the improvement of the life quality of people with SBH and to the reduction of the incidence of neural tube effects, covered by the preventive efforts at the national and global levels. This gathering was the result of past important events that took place earlier this year, such as the participation in the World Health Assembly’s side event titled ‘Accelerating Efforts for Preventing Micronutrient deficiencies and their consequences’. For Papatya, their main focus is on accessibility and independent living.
Current Status on Accessibility in Europe
Cato Lie, IF President described the outcomes of the WSBHD23 side event in Europe and explained what accessibility means for this region. The European Accessibility Act is seen under a disability right perspective, where some everyday products and services have to be accessible. However, it does not cover buildings and transport.
Cato shared the perspective of Montenegro, particularly on assistive products and services. During the COVID-19, persons with SBH from Montenegro were left without catheters for a long period of time. Accessibility is ensuring the access to buildings and transports through a set of norms.
When it comes to public buildings in Ireland, these are still not adapted to wheelchair persons and this directly leads to discrimination for people with disabilities. This takes away the independence of persons with disabilities.
A perspective from the European Disability Forum was also shared. It was emphasised that through advocacy, some of the legislation is now in place with example initiatives, such as the web accessibility directive. The ultimate conclusion was that we are stronger working together.
The youth shared their vision on accessibility to independent living as well as introduced their WSBHD23 Youth Side Event around this specific theme.
Subsequently, the perspective of France regarding accessibility was highlighted. When accessibility requirements are met, persons with SBH can enjoy an independent life, as happened with the French persons with SBH who travelled with an accessible boat. It helps to create role models, as a boy with SBH said to one of the sailors that he is his inspiration.
The main barriers for a full accessibility in Europe are stigmatisation, discrimination and lack of awareness. Persons with SBH and their organisations need to be active, to be able to improve the world and make things accessible for them.
WSBHD23 Global Contest
Over 50 colourful contributions were received from the global SBH community for the categories: Picture, Video, Drawing. During the conference, we celebrated the winners of this contest on their vision of accessibility.
The three finalists of the WSBHD23 contest were:
- Nakaima Jenipher (5) from Shared Growth Uganda
- Daniel Fajardo Somarribas (16) from Costa Rica
- Musota Aliyi (34) from Shared Growth Uganda
Rewatch the WSBHD23 Conference & Side Events
- WSBHD23 Main conference: https://www.youtube.com/watch?v=jC64hCOmda0&t=4351s
- WSBHD23 Side Event Europe: https://www.youtube.com/watch?v=0aACMrk5M1k&t=6221s
- WSBHD23 Side Event Africa: https://www.youtube.com/watch?v=8vrxNNpBUB0
- WSBHD23 Side Event Asia-Pacific: https://www.youtube.com/watch?v=-IMvFg7xRnA
- WSBHD23 Side Event Youth: https://www.youtube.com/watch?v=8glWJdzjfeU