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Oh Janey Mac!


I’m not nearly, I am! And it all feels fine so far. My head hasn’t fallen off, I haven’t forgotten how to party, I don’t need more or less sleep and best of all I can still do my own version of that rub yer stomach pat yer head thing that people do, except I can’t reach my head and my circular motion is just around me belly button!

I guess just acknowledging I’m 40 means theres some significance to it, but I haven’t been able to put my finger on it’s exact significance yet. My feeling is yahoo, I’ve got here and my life has been great so far. We’ve had some pretty major challenges in our family and so far survived and become stronger as a result of them. So no complaints apart from still not being able to properly access the tube for the last 34 years (mum got me on when I was 6 by carrying me down) or being able to access the best intimate live venues in London without the bouncers (oops door supervisors) needing to call for back up to get me in!

we had a great party where it confirmed that I know I’ve got the best family and friends a 40 year old could wish for and they can all still party too!

So what pearls of wisdom have I learnt over 40 years (the following is only useful for my self guidance and not meant as advice or to be followed by anyone else, you can do your own!):

  • Humility is a great virtue to which I will always wish to work towards.
  • I haven’t got all the answers but I’m happy to continue looking.
  • I’m on a journey and love sharing it with others.
  • Don’t tinkle in a field in the wind, especially in Dorking in the middle of the night.
  • Have a good time all the time.
  • I’m a lover not a fighter (except where freedom and discrimination is concerned).
  • Disability has nothing to do with ability.
  • The road to Holyhead is two-faced – it’s the best journey and the worst all in two lanes!
  • Being in a wheelchair is absolutely fine & dandy unless it breaks down. It’s steps, stairs and attitude that stops you doing things.
  • Keep practicing, there’s always something to improve.
  • Trust in others, the Holy Spirit & yourself.
  • My glass is nearly always full to over flowing.
  • Never sit in a deckchair on the Isle of Wight with Ginger, without having a good limerick up your sleeve.
  • Independence is not being able to do everything on your own.
  • Cows are lovely things and I still haven’t quite worked them out.
  • I like music loud.
  • I don’t trust cucumber.
  • This is a beautiful world which we need to look after and I hope to continue seeing the most beautiful sites it has without damaging it too much.
  • Normal doesn’t exist.
  • Music is my bag.
  • Don’t end the day with things left to do, resolve n plan, but go to bed settled or you’ll never sleep.
  • Irritable bowel is really irritating when your nervously about to perform/facilitate/present/meet someone important/speak or if you haven’t got a pa/hoist/strong mate/accessible loo nearby (although I have to add, I’ve been lucky so far!).
  • I love my Mum & Dad, friends and family and my life so far.
  • There’s always a way to do and manage anything life throws at you.
  • Augusto Boal and Paulo Freire have taught me loads.
  • There’s not much on telly.
  • Extreme wealth is as bad and obscene as poverty.
  • Why does business news get air time when community news gets zilch (by community I mean good news opportunity to work and support each other to create change, embrace differences and do things for the good of each other and our world).
  • I’m not the best musician or singer but I love playing and rocking it with a crowd who’s up for it.
  • All means All.
  • Nothing About Us Without Us.
  • My van Lizzie, is wicked and changed my life.
  • My life is always changing so don’t try to stay the same.
  • I still haven’t found my soul mate, but I’ve whittled it down to about 30.
  • It was hard writing the last one without breaking into a U2 number.
  • There is definately good. There is only bad if you want to look for it or if you let ’em win.
  • I’m proud to work with so many inspiring young people.
  • Vic Finklestein & Michael Oliver, Jane Campbell (Dame, sorry Jane) & Jenny Morris have best articulated both my understanding of disability and my experience of disability.
  • The Fonze is still coolamundo…Eh!
  • Colombo is still a genius.
  • Elvis in his youth sung the butt of a song.
  • Frank Spencer is still my hero!
  • My impairment is a total part of me, it’s not secondary, non-existent, to be cured or made better or made normal, it’s part of me, not the whole of me or the dominant part of me, it’s part of me, not to be hidden, or ashamed of, or to be blamed on others or myself, its part of me and like the wheelchair (see above) it doesn’t stop me doing anything that is important to me.
  • My top 5 songs (see along right hand side of blog) hasn’t changed much over the past five years so need to re-visit.
  • Jacks is the best bar in my world and serves the best Guinness in the World.
  • Thank god I’m not a good business man.
  • Try to be as honest as you can to yourself and to others.
  • Turning 40’s cool.
  • Don’t rush, the journey is as important as the destination.
  • There’s plenty of time but don’t procrastinate or even worse don’t not do the things you need to do (and I’m not talking about the washing up)!
  • I’ve got the loveliest, talented, kindest god children you could wish for.
  • Do the washing up ( I prefer doing it as you go long, as long as the food doesn’t go cold).
  • Lists are good so always put at least one thing on that you can tick off straight away.
  • Get the balance between doing the hard things and the easy things right.
  • Doing things together collaboratively fuels and motives my individual work.
  • Inclusion is the way of the Jedi.
  • The Saw Doctors, Pogues, Dubliners, Elvis, Elvis Costello, Robert Wyatt & Billy Bragg to name but a few.
  • I’m a tiger (when I need to be).
  • Don’t forget yer shovel if you want to go to work.
  • Keep wasps off my sandwich.
  • Don’t be pretentious or self important.
  • Never wear a mankini at your birthday party.
  • Do it!
  • I’ll be sorry about writing at least one of these someday, so will update when I’m 80.
  • Nothing is definitive.

So enough reflecting for now, still got some major freedom fighting and plenty discrimination to beat off and I’m not going to rest on that. You know who you are and you’ve been warned.

Be lucky
JK

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