Watch: Campaign calls for equality for those living with spina bifida and hydrocephalus

Alyssa who features in the campaign and who has spina bifida and hydrocephalus.

A powerful campaign was launched today highlighting the need for equality for those living with spina bifida and/or hydrocephalus.

National charity Spina Bifida Hydrocephalus Ireland (SBHI) launched the film to "highlight the constant fight those living with disabilities and their families have to face every single day.”

“For too long people living with spina bifida and/or hydrocephalus have experienced gross inequality, this has to change,” said SBHI CEO, Tom Scott.

The charity says service users and members of SBHI have to 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."

They say that the 2000 people affected by spina bifida and/or hydrocephalus across the country "are often left wanting for even the most basic supports" such as adequate health care, social care, education support, transport access, suitable accommodation, and mental health services.

SBHI member and ‘A day in my Wheels’ campaigner, Sean O’Kelly believes that there are still many areas of inequality in Ireland for which the fight to address continues.

“We have a lot of discrimination out there, for example: the fact that there are 1200 people under the age of 65 with disabilities living in nursing homes. I am flabbergasted by that and I do not understand the reason why,” said Sean.

“Ireland has signed and ratified the Convention on the Rights of Persons with Disabilities (UNCRPD) but we still need to fight for so much.

"We really need to get our politicians on board to improve services for people with disabilities that is for sure.”

You can find more information on the campaign and how to volunteer for the SBHI here.

Digital Desk

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