Today is a conflicting and challenging day for me. I want to write about it but not only am I struggling to find a positive way to portray it but I am legally restricted in what I can say.
Right now in London there is a huge youth-empowerment event taking place, drawing celebrities from far and wide to come and encourage a new generation to change the world for the better. I was part of the initial team that began working on this about five years ago. I followed the event online with a mixture of admiration, hope and incredible sadness too.
“Nature loves courage. You make the commitment and nature will respond to that commitment by removing impossible obstacles. Dream the impossible dream and the world will not grind you under, it will lift you up. This is the trick. This is what all these teachers and philosophers who really counted, who really touched the alchemical gold, this is what they understood. This is the shamanic dance in the waterfall. This is how magic is done. By hurling yourself into the abyss and discovering its a feather bed.”
― Terence McKenna
Amongst the collection of inspirational participants were several disabled people. A young man with no legs, a blind girl and a paralympian with prosthetic limbs. They have all achieved incredible things. They were all told things were impossible for them and they all did it anyway. They have climbed mountains, survived bombs and appalling bullying. This is fantastic. They are truly inspirational people. They are all obviously, visibly (dis)abled. It is brilliant that they are being used by the organisation to inspire young people…….. but when I watched them speak and listened to their words my heart filled up and my eyes cracked and tears streamed down my face, not because I was so moved by their words, but because they do not know the reason that I was not there in person today.
I’ve done the maths. There where over 12,000 young people there. In the UK, One in every 103 people has epilepsy, which means that those motivational speakers where speaking to AT LEAST 116 young people with epilepsy. They were invisible to those around them, but they were there I promise you. The reason I was not there was not because I didn’t want to be, the reason I wasn’t there is simply because I am one of the invisible ones. Along with those 116 kids, I too am epileptic. I have learnt that sometimes, in an organisation whether it’s for profit or not, it is easier for the invisible people to simply stay invisible. This is my story with this organisation;
Finding a way to have a career, a profession is a particularly massive challenge for anyone with an invisible condition/disABILITY. Once found, it is even harder to maintain. In my experience so far, it has not been possible. But I don’t think that means it is impossible.
At first it seemed I had landed my dream job. Joining an international youth empowerment organisation to open their first UK office. I was their first UK employee. I couldn’t believe it.. I had a job I was not only excited about, that I could support myself from, but that I truly believed in! For possibly the first time in my life I was proud of myself.
All this talk of saving souls.
Souls weren’t made to save,
like Sunday clothes that give out at the seams
They’re made for wear; they come with lifetime guarantees.
Don’t save your soul.
Pour it out like rain on cracked, parched earth.
Give your soul away, or pass it like a candle flame.
Sing it out, or laugh it up the wind.
Souls were made for hearing breaking hearts,
for puzzling dreams, remembering August flowers,
These men who talk of saving souls!
They have the look of bullies
who blow out candles before you sing happy birthday,
and want the world to be in alphabetical order.
I will spend my soul,
playing it out like sticky string
so I can catch every last thing I touch.
I loved it. It was hard work, with long hours and lots of challenges but I particularly loved being part of a team. Feeling that I was at last able to say we’re-in-this-together it was rewarding and for the first year I could hardly fault it. It was almost too good. Then Epilepsy reared it’s head, somehow the organisation ‘found out’. I was suddenly un-insurable, I was too needy I wasn’t as flexible as others, I needed too much rest. Over several months, my position became intolerable. Not because of intentional malice but because of bureaucratic red-tape and fear at senior levels. A fear born of ignorance and naivety, of not-knowing-how-to-treat-the-visibly-OK-but-still-disabled-employee, a fear of not-wanting-to-break-the-law, an obsession with rules and the loss of any simple acts of kindness. The-greater-good was more important than my well-being. Needless to say, it ended with solicitors, legal advisor’s and lawyers. I was left to coax my shattered self back out into the world. That is when TMS took hold and where I now am.
People who know this story have asked me if I’m not angry with them? and I am . Of course I am. More than that I am saddened that this happened to me. That I left something I was so passionate about because I have an invisible condition. Saddened that the truth is I left thinking; If I had no legs you’d be loving me……… However, I am not angry with individuals within the organisation. The opposite, I have friends there and I admire their work immensely. I am proud to know these positive-thinkers, world-movers-and-shakers, they rock! I am angry with the policy-makers, law-writers and education providers. If only a few very simple steps had been followed when I first got the job there is every chance this blog would not exist. If only there was more epilepsy awareness stories like mine would be unheard of.
My greatest hope for this day is that some of the young people who took part today will go on to be heads of productive, positive organisations and when they come to employee people they will do so kindly, with care and compassion for all able bodied, visibly or invisibly disabled. They will throw away the red tape, they will say YES, IT IS POSSIBLE. WELCOME and that will be the norm. This blog will be outdated and ancient and people will find it horrifying that anyone with an invisible condition could ever have wished for a visible one so that they would get better treatment. I have hope. It is possible and no one will ever again be treated how I was. I have hope.
The World needs people…
Who cannot be bought;
Whose word is their bond;
Who put character above wealth;
Who possess opinions and a will;
Who are larger than their vocations;
Who do not hesitate to take chances;
Who do not loose their individuality in a crowd;
Who will be as honest in small things as in great things;
Who will make no compromise with wrong;
Whose ambitions are not confined to their own selfish desires;
Who do not believe that shrewdness, cunning and hardheadedness are the best qualities for winning success;
Who are not ashamed or afraid to stand for the truth when it is unpopular;
Who can say “no” with emphasis, although the rest of the world says “yes”.
Ted w. Engstrom, from Motivation to last a lifetime.