Monday, October 20, 2008

Self fulfilling prophecies and second class existence

"If I was you, I'd kill myself."

I've heard those words a few times from people. Strangers, a friend or two who wandered away when they "couldn't handle" my disability.

So when I read this story about Daniel James, a young UK rugby player who committed suicide rather than face a life of paralysis, I wrote a news post about it. And then deleted it. Because stories like this, for me, are more personal than just a news story. And yet I couldn't say what I wanted to right away.

I've seen this story covered for several days now. Daniel was injured in a rugby practice and became paralyzed. The parents say their son was of sound mind and didn't want to live a second class existence. This statement is unequivocal and assumes that, yes, living with paralysis is a second class existence.

It is difficult to explain what emotions these words evoke in me after more than fifteen years of living with quadriplegia. I don't consider myself a second class citizen, nor do I feel I have a second class existence. I do, however, acknowledge that society creates barriers. Those barriers can seem insurmountable, especially to those who are newly disabled. And they create real problems in my life, despite the privileges I have. So this is not to judge, but to talk about the tragedy of all of this.

This story is tragic in many ways, mostly because it is an avoidable one, one that could be retold if things were to change, including attitudes. It is a self fulfilling prophecy to say that living with a disability is a second class existence and then to continue to fail to provide adequate resources for a person with a disability to have any quality of life.

I've learned from experience that judging others isn't fair. I've met people with disabilities on the internet who get no in home care and go hungry, unable to make themselves food and those who are institutionalized when they could live in the community. I've met people with disabilities who haven't been out of their house in years. I've met families completely burned out from caring for a person with a disability, with no respite and no support. These situations are the result of a failure to have adequate resources and not due to disability per se. I know that because the level of disability is not always the determinant of whether a person becomes institutionalized or homebound - it's a result of a lack of money and resources.

I've also met people with disabilities who travel all over the world, who run major corporations, who work in every profession, who have children and raise them beautifully, who marry and sing, dance, paint, write. The difference? Not to take away from their accomplishments, but they , in one way or another, have resources. It's not the level of disability that's the determining factor most of the time - it's the availability of resources.

It's a disgrace that we still live in a world where a young man would rather die than live with paralysis. I remember the fear I had when it first happened. But that initial state some people go through is different than one where facing a lack of resources makes someone prefer suicide to life. It is imperative that we raise awareness about both states of being, in order to reassure people who acquire and/or live with disabilities - and their families- that a life with a disability is not something to fear in and of itself. We can all work toward a better tomorrow, one with resources for those who are the most vulnerable among us, those who deserve to live with dignity.

But in the meantime, stories like this need to be reframed into what they are - an indictment of society and the way it has treated disability globally, rather than a reaffirmation of the lie that living with a disability is an inevitable state of second class citizenship.

Join me. Feel free to say in the comments, whether you are a person with a disability, a friend or family member, that we are not second class citizens. And that it is not inevitable that any of us have to live second class existences. Do it in memory of Daniel James.


Anonymous said...

My son Jason is not a second class citizen. In memory of Daniel James and with prayers for his parents.

william Peace said...

Resources are indeed key as is education, employment, and familial support. The story of Mr. James is tragic and highlights the divide between those with and those without a disability remains immense. I do not know what to think of Mr. James parents. They flew with him to the Swiss clinic Dignitas that assisted his death. Aside from the legal aspect of their action, as a parent I cannot imagine I would be capable of assisting in the suicide of my son.

FridaWrites said...

There is much to be said for a life of the mind and divine spirit. These are more important than our physical abilities, these are what make us human. And I don't refer to cognitive ability. Instead, I refer to passionate exchange with others, inner development, working for change. Disability does not change this.

Why are our lives so inconceivable to others? What difference does it make if we walk or wheel? What difference would it make if someone used a bicycle most of the time rather than walk? There is a difference of course in that disability isn't a choice, but walking and movement are not, as William has said in his own posts, superior.

And yes, resources are key. What keeps us from our potential with disability is much more than a matter of health but of tools and support needed.

I am sorry people have said this to you. One response I've seen before to such people: "why wait?" if they feel quite so strongly. My intent if I said such would not be to imply that someone should do such a thing, but to inspire thought.

Anonymous said...

I too feel insulted and hurt when someone tells me that they'd rather kill themselves than go through what I've gone through. I realize that sometimes they are trying to say that they admire my strength, my tenacity, the fact that I continued instead of giving up, but my first reaction remains feeling hurt.

We are not second-class citizens.

That Daniel James was not shown that he could still live a full and valuable life is tragic.

The Goldfish said...

This was a very good way of covering a story which is, above all things, a personal tragedy for this young lad and his family.

It is not a second class existence.

Terri said...

I am a mom and friend of many with disabilities. There is no such thing as a second class citizen. And I dedicate my life so that my daughter and my friends can have ENVIABLE lives.

I see the problems with disability as environmental and cultural--and their solutions must be environmental and cultural. Daniel and his family's response is heartbreaking. I work to make these choices unthinkable.