You know what it is like when you are waiting for something that should be happening any day now…. the tension just builds up and it’s hard to think of anything else. We’ve been waiting for some weeks now to hear from Dublin City Corporation about our application to set up the An Saol Living Space on the top floor of Creation House, the old Smurfit printing press. The decision is imminent, but hasn’t been communicated. One sleepless night after the other!

I spent the afternoon attending a meeting of the Neurological Alliance Ireland (NAI) discussing their contribution to the Implementation Plan for the 2011-1015 Neurological Rehabilitation Strategy. I know what you’re thinking. I agree. It’s 2018 and we’re discussing an implementation plan for a strategy that was published in 2011? “We need our heads examined” was a campaign run by the NAI recently. Don’t get me wrong. All the work the voluntary sector is doing under the umbrella of the NAI is outstanding. But, what I am missing is the sense of outrage, the revolutionary spirit,  the common sense that would make us shout out, at the top of our voices, that all this is really pretty insane. – On the other hand, all (professionals) agreed that progress is being made, thanks to the extraordinary efforts of those involved.

While I was at this workshop, Pádraig went to an event about the Irish Language in DCU. There is proof, every day, that Pádraig is participating in life, that he has interests, that he has fun, and that he is living. And, taking the risk of repeating myself ad nauseam and of boring you to death, the fact is that if he had been transferred from Beaumont to a nursing home, he would most certainly not be where he is today.

The truth is that we could never have done this on our own, not without the help of so many people; and not without Pádraig’s unbroken spirit and determination. The truth also is that many sABI survivors, like Pádraig, are abandoned by the system and are not getting the help and support they need, in my opinion, violating their very basic and universal human rights to a life in dignity and respect.

Talking about human rights… On 07 March 2018, Ireland ratified the UN’s Convention on the Rights of People with Disabilities (UNCRPD) as the last country of the European Union, eleven years after it had signed it and after most other states, including North Korea, had ratified it. However, Ireland did not ratify the optional protocol that would allow Irish citizens to complain to the UN if they felt that their rights according to the convention were violated. A decision the Disability Federation of Ireland called ‘ridiculous’.