Saturday, October 13, 2012

One Day, One Conference - the inspiration






So we've had the facts and figures and now to what inspired and humbled me about the Muscular Dystrophy Campaign Scottish Conference.

Firstly Hayleigh Barclay:  Hayleigh is a leader, blazing a trail and campaigning for what is just.  She is a Trailblazer - Trailblazers is a network of over 400 young disabled people working to highlight and address issues that are important to them, fighting the injustices that they encounter, breaking down barriers that prevent young disabled people from living a full life,  and enabling others to live a brighter life through friendship, work experience and so much more.


She talked about the report which was published earlier this year which highlights the awful truth of bullying directed towards young disabled people.  Bullying is something I worry about, not for now but for the future; young children look and behave inquisitively and innocently, but as they grow older that innocence can be lost and children can be unkind -even when they don't mean to be - and I really don't know what happens to us as adults that we become so judgemental and full of hatred.


Of those Trailblazers surveyed: 

8 in 10 have experienced harassment, humiliation or embarrassment by a person’s attitude to them being a disabled person


50 percent say they have been intimidated because they are a disabled person

two out of three have been taunted or verbally abused because they are disabled


These figures moved me to tears, that such hatred causing such pain can be part of every day life, causing misery to those who deserve better.  Trailblazers have responded positively and have given hope to many by making simple recommendations, helping those suffering from bullying now and in the future.  The recommendations can be found in the report but the one that I know will make the biggest difference, that has the potential to change people's lives,  is a hotline, a listening ear for those being bullied, a safe and confidential support system for those in need.  Simple perhaps, but life changing.

Hayleigh has also launched a campaign Plane Fair looking at Air Travel and the problems that wheelchair using travellers are encountering - tales of damaged wheelchairs, policies that means power wheelchairs are unable to fly, difficulties in transferring between chair and seat.  Again I worry about travelling as a family with snappie and have reluctantly concluded that we will holiday with the E-Team van in and around the UK, maybe venturing to Europe by rail or ferry, but not by plane. Yes, it's partially selfish, but I wholly support Hayleigh's campaign for hopefully it will open the skies to those in powerchairs, enabling the world to become a smaller place. 


At the end of the conference a special viewing of a film was held.  An idea born from a man living an unexpected life, living beyond the realms of what was once thought possible for a boy diagnosed with duchenne muscular dystrophy at the age of three:

"you suddenly get a crazy idea. You are going to make a film: a film about some remarkable Duchenners who are all living productive, creative and fulfilling lives. You want to inspire a younger Duchenne generation and their parents by showing them just what can be achieved even under this most crippling of disabilities."  

I cannot possibly do Jon's story justice so please check out the website A Life Worth Living and be inspired, be humbled and be proud, because I was: these men are living their "wild and precious" lives and that's just amazing!










"Never give in.  Never give up."

 - another of my take home messages from this one day, one conference which was  inspirational but at times challenging too, but that's life in it's entirety, isnt' it?






Take a look at the other posts from the Conference:
One Day, One Conference -facts and figures
One Day, One Conference - my day





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