Erika was told eight years ago she may never walk again. She talks about the barriers, attitudes and challenges she has had to overcome from day to day. Now she faces her biggest challenge yet – running a half marathon.
I have Ehlers-Danlos Syndrome (EDS) and a form of Dysautonomia called Postural Orthostatic Tachychardia Syndrome (PoTS). My autonomic nervous system does not work leaving my body unable to control basic functions such as heart rate, digestion and blood pressure. My connective tissue is also faulty; it is weak and stretchy causing daily dislocations and pain and exhaustion just to name a few. When I was 12 I was diagnosed with Complex Regional Pain Syndrome (CRPS), due to this I lost the use of both my arms and legs, I was told I would never walk again.
Social pressures and attitudes
Love it or hate it social perceptions surround us everywhere we go, overflowing our brains like a virus on an unsuspecting computer. Without realising, judgements are made on a person’s abilities and circumstances without real knowledge. Embarrassment, awkwardness, isolation; formed from age old perceptions and misunderstanding, feeding down through generations, effecting perceptions today. You ask why and you’re told “It’s just the way it is”.
The frustration runs through our veins like the harshest river, everyday willing the banks to burst, for reality to prevail and everyone to see we are human too. Constantly having to prove ourselves twice over, opening up our souls to strangers in a futile attempt to prove we are more than a malfunctioning body, more than a pity case, more than our disability.
What do you think of when you hear the word disability?
When you hear that word, what first comes to mind?
“I feel sorry for you.”
“You’re so brave.”
“I’m so lucky I’m not like you.”
“What kind of life is it to be like that every day.”
“You’re not living, you’re surviving.”
“I hope my children are not like you.”
For many it is these six heartbreaking quotes. For too many people, a person with a disability is seen as someone who is surviving, not living. A person saddened and ruined by their circumstances.
However to me, my disability made me the person I am today.
The person who gives everyone a chance, no matter what their past.
The person who works tirelessly every day to achieve my goals.
The person who knows the sky is the limit.
The person who is a dancer.
The person who is understanding.
The person who is training for a half marathon.
It is now 8 years after being told I may never walk again and I am currently training for a half marathon which I will be completing in aid of Scope.
A half marathon for me will be an extremely physically and mentally tough journey. I don’t mean it’ll just be a little tiring, I mean one of the toughest things I will ever do!
So, why do it then?
I have grown up in a society where disability and illness are a taboo. A vast majority of people assume that illness and/or disability mean you can no longer live a fulfilling life and that you definitely can’t do sport. This made life growing up with a disability hard for me, and even more so when I fell very ill two years ago. I felt consumed by hopelessness, overcome by the unknown, realising the things I would never do. Social perception cemented this belief in my mind, pushing me every day to give up. Telling me it was “just the way it is”.
The thing about disability is it makes us powerful. It provides knowledge of issues much wider than our own. Opens our mind to what life really is and that it is up to us to form our own future. If we are able to overcome what society dictates we should and should not be able to do then we can do absolutely anything.
So I am determined to do this half marathon! Training will be hard for me, I know that. I also know that there will be times that my health will go downhill, I will be scared, upset, angry and want to give up. There will be days when I will think it is impossible.
But I will remember the power I have. And I will remember the little girl with Downs Syndrome I used to teach dance to and the many other disabled children out there with so much passion, enthusiasm and raw talent. And I will do it for them. I will aim to change social perception so that they can grow up with less of a fight, knowing that just because you may be disabled or chronically ill it doesn’t mean you can’t do something, just that you may have to do it in a different way.
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