I’ll shine for you. Then I’ll burn for you. Then I can shine for you. That’s what I’ll do.

Paul Noonan – Rocky took a lover

Paul is the front singer of Bell X1, one of Pádraig’s favourite bands, with songs like Rocky Took a Lover, The Great Defector, or Velcro. The songs have beautiful lyrics and many are based on real life stories the band or Paul experienced, deeply based in Irish culture. They are super cool with next-to-no-showmanship on stage. They have a seizable, very committed follower-ship – though they never made it really big.

Someone in An Saol who knew about Pádraig’s liking of the band told us last week that he had just heard that Bell X1 were going to play in Roisín Duff in Galway next week. We enquired whether the venue was wheelchair accessible, which it is, and bought three ticket straight away, before they were sold out. With the backlog of cancelled concerts from last year now slowly coming back on stream, it is next to impossible to get new tickets for the band.

We got the ticket, double-checked and realised that the concert is part of a 5-day open air event, Fall Right Into Place, in Claregalway Castle. Nothing like knowing what you’re doing…

Last week, Pádraig went out for a walk and decided to call in to McDonald’s in the Omni for a burger, al fresco. It was the first time in more than a year that he went to a ‘restaurant’. It was a bit of a complex setting but it worked out fine.

He also attended An Saol’s Summer Fest with great food, drinks, and – above all – live music.

Because of the weather, we could not have it outside in An Saol’s back garden, but the party was nonetheless a very welcome change and quiet entertaining. Even the MotoMed got some attention and became even more attractive with some summertime decorations.

We’ll head for Galway on Wednesday morning, have a little nap on arrival, before heading for the festival in the early afternoon, supported by big umbrellas, waterproof shoes, and rain jackets. We’ll spend the night in Claregalway and get back to Dublin the next day.

It’s fun for big adventures coming your way, especially when you don’t expect them.

It made me think of perceptions, rules, guidelines, expectations.

It was the expectation by the ‘system’ following Pádraig’s accident that he was to move from the hospital to a nursing home (“Which nursing home is he going to go to?”). Its perception was that he would no longer “have a life”. We were giving rules and guidelines telling us that we, his family, would have no say in the planning of his life and decision making about his future.

The Ombudsman has recently given his answer to that policy of placing young adults against their will and that of their families into nursing homes. He called it Wasted Lives”.

No other than then Taoiseach Leo Varadkar was quoted in the Irish Times last year as saying on the Late Late Show that nursing home care for the elderly might not be a wise investment in the future, but could be organised along the lines of “disability care where it has in fact been official Government policy since 2011 to end congregated settings for persons with disabilities” – especially in times of a pandemic. While this work is obviously still in progress, it is official policy to facilitate community living for all people with disabilities – regardless of age or severity of disability. Of course, this is supported by the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified. It recognises institutionalised facilities as a violation of human rights.

In 10 years, sadly not much has happened on this front, because we follow the same old same old perceptions, rules, guidelines, and expectations about the needs – not so much of the people with severe brain injuries – but of the system that is supposed to assist them.

Last week, I came by a billboard showing Katie Taylor with a tagline saying: “Some people follow the rules, others break them”.

When I followed that up a little I found more quotes:

  • By Pablo Picasso: “Learn the rules like a pro, so you can break them like an artist.”
  • By the Dalai Lama: “Know the rules well, so you can break them effectively.” 
  • By Banksy: “The greatest crimes in the world are not committed by people breaking the rules but by people following the rules. It’s people who follow orders that drop bombs and massacre villages.”
  • By Albert Einstein: “I have only two rules which I regard as principles of conduct. The first is: Have no rules. The second rule is: Be independent of the opinion of others.”
  • By Mark Twain: “Life is short, Break the Rules. Forgive quickly, Kiss slowly. Love truly. Laugh uncontrollably And never regret ANYTHING That makes you smile.”

The essence of all of this is, I suppose, that nothing has ever been changed by people following rules and procedures that created the current ‘system’ in the first place.

On Wednesday, Pádraig will – and not for the first time – do what is the right thing to do. And defy expectations.

He will shine for us.