Look, when I started out, mainstream culture was Sinatra, Perry Como, Andy Williams, Sound of Music. There was no fitting into it then and of course, there’s no fitting into it now.

Bob Dylan

Just thinking…

I’ve been writing for years now about Pádraig and his world following that morning on 27 June 2013 in Brewster on the Cape.

About his courage and my desperation. About a culture that seems to accept the slow death of young people in nursing homes. I have been trying really hard to remain positive, full of hope, and not so much on the attack but encouraging change.

I have quoted Greta and her famous Blah Blah Blah speech in which she makes it clear that we will have to change: We can no longer let the people in power decide what is politically possible or not. We can no longer let the people in power decide what hope is. Hope is not passive. Hope is not blah, blah, blah. Hope is telling the truth. Hope is taking action. And hope always comes from the people.

There were times when I was ready to pack it all in. Imagine: when I was ready to pack it all in — while Pádraig was going from strength to strength.

That time might (will?) come again.

But last week, my head was spinning. Because our combined power very much looked like to begin having an impact: clients and families of An Saol, and the example set by us, our power of hope, our action, led to a meeting in which long-term sustainable funding for An Saol and funding for our own Teach An Saol were discussed in earnest. No public announcement and no press release yet. But that will, no doubt, follow in due course.

We have been telling the truth. We have been taking action. And it all came from us.

Pádraig enjoyed our parish’s summer party last Sunday. It was great to meet the neighbours and say ‘hello’ to friends. There was plenty of food, entertainment, and even live-music. We missed the ‘dog show’, but spotted what might have been the winner in the crowd, red hat and all.

We set up a gym rack in An Saol last week and are about to put together exercise programmes for some of our clients who are able and want to use the rack: serious resistance and weight training, in addition to the other exercises they are doing.

Check out these guidelines by the WHO. Here is an extract covering Adults Living with Disability.

Adults living with disability:

  • should do at least 150–300 minutes of moderate-intensity aerobic physical activity; 
  • or at least 75–150 minutes of vigorous-intensity aerobic physical activity; or an equivalent combination of moderate- and vigorous-intensity activity throughout the week
  • should also do muscle-strengthening activities at moderate or greater intensity that involve all major muscle groups on 2 or more days a week, as these provide additional health benefits.
  • As part of their weekly physical activity, older adults should do varied multicomponent physical activity that emphasizes functional balance and strength training at moderate or greater intensity, on 3 or more days a week, to enhance functional capacity and to prevent falls. 
  • may increase moderate-intensity aerobic physical activity to more than 300 minutes; or do more than 150 minutes of vigorous-intensity aerobic physical activity; or an equivalent combination of moderate- and vigorous-intensity activity throughout the week for additional health benefits.
  • should limit the amount of time spent being sedentary. Replacing sedentary time with physical activity of any intensity (including light intensity) provides health benefits, and
  • to help reduce the detrimental effects of high levels of sedentary behaviour on health, all adults and older adults should aim to do more than the recommended levels of moderate- to vigorous-intensity physical activity.
  • It is possible to avoid sedentary behaviour and be physically active while sitting or lying. E.g. Upper body led activities, inclusive and/or wheelchair-specific sport and activities.

At least the WHO have realised that, paraphrasing Dylan slightly, Sinatra, Perry Como, Andy Williams, Sound of Music ain’t mainstream no more.

You don’t need a weatherman to know which way the wind blows, is another great quote by Bob. There are real, believable indications that the times they are-a changing.

Because we never gave up hope.

Just thinking…