EDS – No Challenge for Determined Film Maker – Ashleigh Harley

The sheer determination of some people is frankly a marvel to behold, and this comment is particularly relevant to Ashleigh Harley, a young lady who has been inflicted with dire health issues throughout her entire life, but has remained positive and determined to get everything she possibly can from her life. Despite her infliction of EDS (Ehlers-Danlos Syndrome), she has continued riding horses and show jumping when she can and has become a worldwide recognised producer of short films. In this article, we talk to Ashleigh, where she tells us about her life and more importantly, how she tries, and so often succeeds in overcoming her affliction.

Ashleigh was born deaf and at four years old she had an operation to correct this. Naturally, both she and her family hoped that she could then go on to live a happy normal life. However, despite having a relatively normal childhood, she did suffer from, what at the time were thought to be minor but odd physical afflictions. Her love of horses started when she first sat on a pony at the tender age of two, when riding on a beach, and from that moment, horses were her life. The older she has become the more important they have been to her. Like any small child who ‘got the horse bug’, no doubt, she was a complete pain in the backside to her parents, always wanting more of anything to do with horses and ponies. No doubt at that age, her wish list was simply endless!

Ashleigh started to ride in British Showjumping competitions at the age of ten, and with some success. Then, suddenly, one morning, after she had tended her horse in the morning, fed it, mucked it out, and all the other usual domestica required, she was walking across the yard and simply collapsed. An ambulance was called and all those previous minor health niggles resulted in complete blindness for four days, on a life support machine and in a coma. The trouble was that no one could diagnose her condition. Soon, however, after trips to specialist hospitals in London and seeing one consultant after another, she was diagnosed with a rare, but life changing illness called Ehlers-Danlos Syndrome. EDS.

From the age of twelve, the rest of her life was to be so very different, including her schooling. To the rest of her peers, she was a normal looking child and they could not understand why she was absent a lot of the time due to hospital operations and consultations. As a result, she was badly bullied, and very quickly school was not something that would work with her new enforced mode of life. Basically, EDS is a genetic issue which affects the collagen and is caused by a DNA fault. The brain and the spinal column become dis-jointed for want of a better word; and this in turn causes difficulty in walking, breathing and digestive issues.  Would her illness stop her love of horses and her life? Not a chance. She may have to put things on hold for a while and may not be able to ride for a while, but her determination was such that she would overcome her difficulties as best as she can and would ride once again.

I started by asked Ashleigh what is about the horse you love so much? She replied after some thought, “Well, it’s the soul of the horse, and the fact that they are completely non-judgmental. It doesn’t matter who you are, horses have the ability to connect with you, however you may be feeling at the time. In my own case, when I started having difficulty in walking; just to get on the back of a horse was freedom again. It also gave me some confidence to carry on and make films and live – so I really owe horses a great deal.”

Due to her difficulties at school, both with her peers and her inability to attend that often, Ashleigh needed to find another way to express herself both personally and educationally. Her teachers decided that she would be ineligible to take exams in the usual way as she had missed so much of the work needed, so Ashleigh engaged in another passion she had had since a small child – filming and photography. So, she set her mind to scripting and directing short films, the first of which was called “The Wall of Lyon”.  This was a thirty to forty minute film about a young girl fighting dragons, a fantasy film. As Ashleigh said “That was really good fun because we had all sorts of effects, we had fighting on the beach, galloping horses, people with swords – it was epic, really epic – I loved making the film.”

We continued our chat with Ashleigh, when I asked her about her latest project and her new production, The Dark Horse. This is a very different piece she told me, and is a documentary type film about horses – show jumping and why it should be included as a discipline and sport in its own right in future Paralympic Games. This is a film she says “will definitely hit that sweet spot; if it did well, she would consider making it into a feature film. As it stands, it is so perfect” she says “and it is about the right length for documentaries at film festivals” and clearly, this is where she wants her latest production to be aired. The film has two objectives, the first is to encourage the FEI and the Paralympic committee “to include show jumping in future games and the second is to raise awareness of invisible disabilities, and to inspire people to live the best life they can no matter their struggles.” as so succinctly put by Ashleigh. I asked Ashleigh why she was so passionate about having show jumping within the Paralympic movement and her quite definite answer was simply “Well, it just deserves to be there doesn’t it?. It is such an inspiring thing and I think it will change a lot of people’s lives.” I further asked Ashleigh about the risks to a disabled person competing in show jumping and a fall from the horse for them may, and probably would be far more serious than if an abled person fell off at a jump. After all, I said, there is the opportunity for Paralympic dressage? Ashleigh in her rather determined but disarming way was quick to ask me “whether or not I thought that people should have a choice, and  it is surely up to the disabled individual to decide what discipline they want to compete in, adding that if someone has a dream, you can’t top them!”

In her quest to make The Dark Horse, Ashleigh has received a huge amount of support. She was delighted to meet Joe and Laura Stockdale, the force behind the popular show jumper, Tim Stockdale’s legacy, The Tim Stockdale Foundation, who have given her their unstinting support. Tim sadly died of cancer at an early age of only 54 in November 2018. One of Ashleigh’s proudest moments recently was being allowed to ride Tim’s 2010 winner of The King George V Gold Cup Kalico Bay (The Hickstead RIHS Grand Prix). Chief executive of British Show jumping Iain Graham has also been very supportive, and so in fact have the IPC, (The International Paralympic committee).

However, perhaps the best support Ashleigh could receive is from the Oscar Winning Team based in the UK and who were behind the film The Silent Child. The team behind this film were Chris Overton, Rachael Shanton and Rebecca Harris and they collected the Oscar for The Silent Child. Rachael Shanton is herself very horsey, so completely understands where Ashleigh is coming from and has she has just started filming for a re-make of the famous Yorkshire Dales veterinary series ‘All Creatures Great and Small’ playing the part of Herriot’s wife Helen.

Although the Corona pandemic has slowed things down considerably for Ashleigh and her ambitions, she is stoical about this and says that it has given her the opportunity to make some improvements to the script and film generally, which otherwise she may have missed.

I had to ask how she finances her films. She immediately retorted with “Difficult – its been bits and bobs here and there, a little crowd funding but mainly my own money.” We would like to offer this opportunity to our readers to join Ashleigh and give her the undoubted support she deserves. She is continuing to crowd fund for her film The Dark Horse, and with the support she has so far garnered, a success at the international film festivals must be on the cards, especially after her experience and success of her first film The Wall of Lyon.

Finally, I wanted to find out a little about Ashleigh herself and began by asking her how she relaxed. Her reply was different certainly – “What! (with a considerable amount of hollow laughter) Relaxing! What is that!” After that response, I tried a different tack and asked her what was her favourite film, apart obviously from her own? She told me that she liked all the horsey films like Sea Biscuit etc, but she did like the film Avatar. She then went on to explain “that I don’t relax at all, I like to keep busy and have even been known to take work into hospital with me, but I have spent rather a lot of time there in the last few years!” Still not to give up on finding out some more about Ashleigh, I persisted and asked where she would most like to go on holiday if money was no object to which another extraordinary answer was “The moon” with a huge amount of laughter. At this point I gave up!

In conclusion, Ashleigh Harley is a young lady full of vitality who has been struck down with a horrendous illness, from which she will sadly find no cure. However, her bright demeanour throughout our conversation just shows how determined she is to be as little inconvenience from her situation as possible and frankly she is an inspiration in her positivity.

Just as a footnote, if you would like to support Ashleigh and her film The Dark Horse, she would be very appreciative and you can by following this link, her crowd funding site.

Images Courtesy Emma Lowe Photography

Sharing is caring!