Disability

Abigail : Singing loud and positive for those with Invisible disabilities.

6x4a5391“Having met other young people with similar, and completely contrasting conditions to my own, my dream and my vision for my future changed almost overnight, to one where I can help others, using my singing, so that they don’t have to endure what I have to endure with a chronic, complex and invisible illness.”

Abigail’s dream was to be a professional singer,  and she was in the process of being developed by Dutch Van Spall of Big Help Music, and scouted by “Britain’s Got Talent” ; the future looked promising.  But Abigail was born with Ehlers-Danlos Syndrome and an unusual variant of Postural Tachycardia Syndrome (POTS) which creates a complex web of problems that affects connective tissue in the body, maintenance of body minerals, tiredness,  pains and a variety of seemingly randomised, daily conditions that can be disabling in ever-changing ways.  Today might be good, tomorrow might be bad, but then it might be good. As she has got older, albeit she is only 25, the unpredictability and impact has become more of an issue, and has really meant that a solo music career was not practical.

Abigail had always been aware that during the formative childhood, and teenage years,  her personal development had been interrupted by her condition – especially her social life.  She couldn’t always plan to meet friends, sometimes she would cancel at short notice; no matter how sensitive, over time, friends would struggle to understand and accommodate – was she making it up? Was it psychological? Was it her character? Children and especially teenagers need to fit in, to be part of something and having an illness can impact on this aspect. There were very few external signs of her condition and, in that way – it was “invisible”. But, also as she was becoming progressively more isolated, then she, herself, was also becoming “invisible”.

In discussions with her music mentor, Dutch, the concept of being “invisible” was blended with  his wish to continue to help her fulfil her potential and they decided to form a choir group called “The Invisible Friends” (TIF)…and it was launched in February 2016.

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There were no hard and fast rules to be a member of the group – other than youth. There was no need to be an accomplished singer – it was that either the person’s condition was invisible and/or that they were in some way, invisible, to the way society, or the medical profession, viewed their illness. In all cases they were being disadvantaged by the invisible way that they were being treated – they lacked visibility.

In the last 10 months, since they started,  they have made a huge amount of progress. Abigail described it as:

“…a  journey that’s been so inspirational, and already it’s changed, and has saved the lives, including mine, of the 10 members involved.  By ‘saved’, I mean,  It’s about quality of life, learning to socialise, learning to trust, being able to go home and tell your family that you have a friend, being able to go to school and being part of reality”

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But it has not been easy, and  through being in a choir it has had some profound benefits for the members:

“They are trying to explore normality, and the challenge of facing the world with their own unique condition. How do you deal with that? You deal with it through singing! And you say to them – we’re all here, to strive for one purpose and that purpose is to bring the invisible world, the invisible community together, to go out  there, and positively open the eyes of society and stand strong together and form a united front.  And with singing, you find that if you say to them, use this passion , use the lyrics, use your unique story  to, not only get out the emotions that you’re feeling, but also as a way to support each and every person in the group….and it works! And we’ve seen ,recently, the group come together as one, and they’ve really started accepting  each other for what they are”

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“For the young lad with autism – in the original workshop he couldn’t tell you his name, he couldn’t look at people, he was very agitated – he had to have his mum in the room with him. And now – he stands up and does solos.  The choir is a big part of his life now.”

“…one person came  to us, and they were “locked away” with no sense of pride, no sense of purpose, didn’t see a future, was really struggling…and now this person…it’s like she’s had a full body, mind, everything, transplant.  She’s completely different!”

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The last 10 months has sharpened Abigail’s focus on how much she can help through this group, and the shared pleasure and creative endeavour of singing.

“We want to be the Voice of the Silent Souls, not the one’s passed on, but  the ones that are out there, now, sat at home thinking that they’ve got no future, and ones who are allowing their condition to define who they are, and stopping them from realising them that they are a person, worthy of the same respect, dignity and opportunities as everyone else…and that is a Silent Soul”

There is much to do, and not enough hours in the day when Abigail is fully fit to take her vision forwards. A charity is in the process of being established with a professional Chief Executive Officer, and a team who can support “The Invisible Friends” to grow.

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Shortly they will be releasing a 4 track EP, and that is being helped with free recording time from Big Help Music, and TIF recently performed  at their Christmas Festival. Abigail also arranged an event to showcase their talent in “The Pride of TIF”.  The future looks very positive.

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During this interview I had noticed that she was attached to a unit that was pumping liquid into her stomach  – it  runs 24 hours a day to combat her problems with fluid and nutrition absorption.  When I came to take a photo, I asked her if she was ok if it was in the picture –“Yes”, she said, immediately, picking it up off the floor, giving it a small hug “This is part of me!”

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She explains with calm precision, and with detailed medical terminology the complexity of her condition although she has begun to refrain from googling too much these days. She somewhat poignantly, succinctly, and candidly referred to herself as being a “Positively, fragile, soul”

I look forward to that positivity being even more visible in the future.

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The Invisible Friends can be contacted through the link HERE – new members are always welcome

 

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Categories: Disability

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