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We are Spina Bifida Hydrocephalus Ireland (SBHI). We are the national organisation for everybody living with spina bifida and/or hydrocephalus across Ireland. The Equality Now website is the hub for our campaigning and advocacy activities. Thank you for visiting and please to get in touch if you need more assistance.

 

You can find out more at: www.sbhi.ie

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SBHI launches 'The Fight of our Lives' film

Updated: Oct 17, 2019

The national charity Spina Bifida Hydrocephalus Ireland (SBHI) has launched a powerful campaign film aimed at highlighting the need for equality for those living with one or both of the conditions.


Alyssa and her mother Amanda

View the film here:


'For too long people living with spina bifida and/or hydrocephalus have experienced gross inequality, this has to change.' These are the words of SBHI CEO, Tom Scott, who today said that the new campaign film was 'intended to highlight the constant fight those living with disabilities and their families have to face every single day.'


Unfortunately, the service users and members of SBHI are engaged in a fight for the most basic of services and this campaign has been launched with the express purpose of educating wider society of the reality of living with a disability in Ireland today.


In trying to avail of adequate health care, social care, education support, transport access, suitable accommodation, mental health services, and so on, the 2000 people affected by spina bifida and/or hydrocephalus in Ireland are often left wanting for even the most basic of support.


SBHI works with limited resources to offer support wherever possible - giving advice, offering peer support, providing respite, advocating on behalf of service users, working with schools, and facilitating Resource Centre activities, but the reality is that much more is needed in terms of systemic change and progression.


The purpose of The Fight of our Lives is not only to bring this reality under closer inspection by wider society, but also to see people beyond the immediate audience of SBHI stepping up to become advocates for those affected. Everyone who sees the film is encouraged to visit the campaign website - www.equalitynow.ie - and to take the disability awareness quiz, contact their local TD on these matters, and find out more about volunteering or fundraising for SBHI.

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