Funding for campaign to challenge Irish society’s perceptions of disability 

Spina Bifida Hydrocephalus Ireland (SBHI) has been granted funding to undertake a ground-breaking visual campaign to challenge the way people living with disabilities, and Spina Bifida and Hydrocephalus especially, are perceived by Irish society at large.

A total of €8,000 is to be made available to SBHI from the Department of Justice and Equality’s Disability Awareness Initiatives Fund for the ‘ENABLE:ABILITY’ project to produce a top quality commissioned short film.

This film will communicate the ‘ENABLE:ABILITY’ message with striking effect and deliver a lasting message in terms of how wider society can often understand and ascribe negative language and attitudes to people living with disabilities.

Through also raising awareness as to the prevalence of Spina Bifida and Hydrocephalus in Ireland today, the film will demonstrate the ways in which societal attitudes towards those living with disabilities are in fact powerfully disabling themselves.

With a positive outlook, the film will communicate the way in which people living with Spina Bifida and Hydrocephalus lead fulfilled lives, and even more so when supported by enabling attitudes from a truly progressive, equality driven society.

The project will be a catalyst to get Ireland talking about often ignored subjects, and will highlight what a transformative difference people can make when approaching the realities of disability with a positive approach.

The ‘ENABLE:ABILITY’ project will also encourage the submission of stories to a bespoke website. The accounts from real people from within the SBHI membership who truly know the power of disabling attitudes, and will ensure that this is a campaign genuinely driven by those experiencing marginalisation due to their condition.

“This is a significant piece of project funding which allows SBHI to campaign on key issues faced by our members every day,” commented SBHI CEO, Tom Scott.

“The fact that the National Disability Authority has approved this project is a great endorsement of where SBHI is positioning itself for the future and we look forward to realising real change for everyone affected by Spina Bifida and Hydrocephalus through the ENABLE:ABILITY project.”

The benefits of the campaign – ‘ENABLE:ABILITY’ will give a group of people, who for far too long have existed without a voice, a platform from which they can deliver their messages about what life is really like when living with a disability.

The script for the film, which is receiving this essential funding aid, will be written as part of a facilitated group workshop with SBHI members and any other interested parties.

SBHI CEO, Tom Scott will be with workshop facilitator and the SBHI Family Support Workers, Youth and Respite team, and Education Development Co-ordinator will also be involved so that their direct experience can be drawn upon and utilised.

To download this press release, please CLICK HERE


Notes to Editor

Spina Bifida Facts

  • With around 40 babies born with Spina Bifida each year in Ireland, we have one of the highest incidence rates in the world.
  • Spina Bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord.
  • Translated, ‘Spina Bifida’ literally means 'split spine'.
  • Spina Bifida causes significant mobility issues, continence problems, pressure sores, and social challenges of isolation and loneliness.

Hydrocephalus Facts

  • 1 in 1,000 pregnancies are affected by Hydrocephalus each year.
  • Hydrocephalus can also develop later in life as a result of head impact injuries.
  • Hydrocephalus is a condition where too much cerebrospinal fluid builds pressure in the brain, this is usually relieved by a shunt (a rubber tube) which is fitted internally to drain the fluid away into the stomach, or sometime the heart.
  • Hydrocephalus is often referred to as a hidden disability due to the lack of obvious physical signs in most cases.
  • Common issues arising from Hydrocephalus include: intellectual difficulties, behavioural problems, memory issues, and challenges to cognitive processing.

Spina Bifida and Hydrocephalus

  • Spina Bifida and Hydrocephalus are life-long conditions and although there is no ‘cure’, there are many ways in which those living with Spina Bifida and/or Hydrocephalus are enabled to overcome challenges.
  • It is common for both conditions to be experienced at the same time from birth.

About SBHI

  • Spina Bifida Hydrocephalus Ireland (SBHI) is a national organisation supporting more than 2,000 people who know Spina Bifida and/or Hydrocephalus to be a reality in their lives.
  • SBHI works to increase awareness about Spina Bifida and Hydrocephalus, as well as the essential funds which ensure that our unique service is sustained.
  • We deliver unique services through our team of: Family Support Workers, a Youth and Respite Team, our Education Training work, and through our Resource Centre in Clonshaugh. Together these teams ensure that everybody affected receives the best support available to them as they seek to live fulfilled lives.

To find out more about SBHI, the conditions we work with, and how to get involved, please see: www.sbhi.ie


Aideen Sutton, Communications Officer
T: 01 457 2329
M: 087 601 8429

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