"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.