(This blog post is personal. They are my real thoughts. Mine and mine alone.)
I have been asked a million times since I began working in my field why I do what I do and why as an able-bodied person I made my career advocating for persons with disabilities. I’ve answered it the same way a million times; “It’s not about me, so it doesn’t really matter why.”
I’ve stuck with that same line for almost ten years now, but more and more I have been thinking about the “why”. Not why I do it or why I started. But why I stay.
The “why I do it” is easy to answer. I grew up the daughter of two advocates for human rights. My house was filled with conversations about equality, readings on the betterment of humanity and a deeply ingrained belief that no one person held more weight than another because of their social status. A person was to be judged based on their contributions to society; intellectually, ethically and without thought to their own personal gain. “It is about a hand up in life, JED,” my father would say. “Not a hand out.”
The “why disability” is also pretty straight forward. It has always been in my life and to me, it is what I know. I have never viewed a person living with a disability as someone to be pitied or shunned, because I have never put the disability before the person. My cousin was just my cousin; who danced on top of a bar in New York City when she turned 70. My friend was just my friend who told the best jokes. The kid that I sat next to in grade school was just the best looking boy in our class.
What I did view was how the world didn’t take this same approach. My cousin was viewed as a frail old woman with a white cane. My friend, was another bitter person complaining over the lack of accommodations made in order to keep her job as her sight faded. The boy in my class with the beautiful blue eyes was the “retard” who was forced to defend himself every recess and I was the “troublemaker” who complained to teachers for turning their back on it. When teachers begin holding bi-weekly meetings with your parents over your “lack of respect for authority”, pretty guaranteed you’re not going to end up with a career as a bureaucrat. So here I am.
The “why I stay” is the question that has been on my mind more and more lately. I have seen remarkable changes in the past few years; both ones to be celebrated and ones that have slid us backwards. By the very nature of the work, it is not an easy road and I have taken more than my fair share of lumps while doing it. I don’t write that in a manner asking for pity or comparing my experiences to those of others. It is just a simple fact – I did not pick a straight and easy path to walk.
And I have pissed people off along the way. I have loudly voiced my thoughts in rooms of people who are not accustomed to being challenged. I have disagreed with people who have told me that I have no place in this field. I have banged on doors until they splintered and let me walk in. I have started a company, which in its very design, was created to force the recognition of para-talent into the mainstream.
I read with curiosity during the Paralympic Games this summer, numerous blog posts and articles calling for an end to the so-called objectification of persons with disabilities by showcasing para-athletes as super human. A ground-swelling, calling for less attention to be placed on the athletic achievements of persons with a disability and more to be placed on the celebration of their day to day achievements; such as having a job, raising a family and being a productive member of society. To a degree, I can understand the message but are we in a place where this level of equality exists yet? And if we were, would that even be something that someone would want to be given credit for? No one gives me a pat on the back for washing my dishes or buying groceries. Why should this be some measure of accomplishment for a person with a disability? “Well done, you! You got dressed, found your front door, opened it and went to work.”
It is not the person that should be changed. It is the world that needs changing. More people need to be included into areas of life where they have the fundamental right to have full participation in.
It is the extreme accomplishments, such as para-athletics, that can be used as a catalyst to change the outward perceptions of what can be achieved. And can also be used to bring attention to the true barriers which still stand in the way of a level playing field for all. And that barrier is always monetary.
I started a campaign to help to get Brian Cowie, one of the top Visually Impaired Paratriathletes to ITU Worlds in New Zealand this Fall and it has been a struggle to fund since day one. Is Brian a gifted athlete? Damn right he is. Will Brian reach the Paralympic games in 2016? I have no doubt that he will. Is Brian an equal in sport? Yes, a million times over.
Then why does he need financial help to get there?
Because by the very nature of accommodation requirements, the costs for a para-athlete are astronomical in comparison to those of an able-bodied athlete and the funding is virtually non-existent.
Every para-athlete I have ever known has adopted the motto in the title of this blog post. You have three choices in life. Give up, give in, or give it all you’ve got. They have refused to be told that they are worth less in life and sport. They have found ways to train when no one was there to help. They have refused to be defined by any other label than that of an athlete.
It should not be a lack of funding that stops the progression of para-athletics in our country and beyond. And it is those extreme achievements that will act as a step in removing the last barriers that still exist for all persons living with a disability; the monetary stranglehold that impacts true independence.
So, why do I stay? Because I’ve watched friends achieve greatness. I have run down the finishers shoot beside them. I have learned lessons that only they could teach me. And I still see what needs to be done.
But, I am asking – please help to do it. Take the time to visit the funding for Brian’s campaign here and give. Because this is one step toward a change that is long overdue and the first of many I intend on seeing happen.
I, too, have no plans to give up or give in. Just to give it all I’ve got.