What Walt Whitman can teach us about living with disability

---

I celebrate myself, and sing myself,
And what I assume you shall assume,
For every atom belonging to me as good belongs to you.
…
Welcome is every organ and attribute of me, and of any man
hearty and clean,
Not an inch nor a particle of an inch is vile, and none shall be
less familiar than the rest…

-Excerpts from Song of Myself by Walt Whitman

---

I’m still meditating on two questions that people often ask me, “What is wrong with you?”, and “What happened to you?”

What I often say in this situation differs greatly from what I actually want to say. Just to be nice, I’ll often humour them and tell them all about how I got here, revisiting the same topics: born like this, used to play sports, couldn’t anymore, now I play music, started using the chair 5 years ago, etc. But lately, I’ve been not so “nice”, opting for honesty over agreeableness. This, I think, is key to living in truth, rather than accepting the perceptions of society and going along with it.

What I have been telling them is that there is nothing wrong with me and nothing happened to me. I want to throw the question right back at them, because I’m sure they have their own internal and external struggles. This imbalance is rooted in perceptions related to the charity model of disability, where people assume we are more disadvantaged than they are and have less to offer than they do. The question “what happened to you?” connotes that my main goal is life is to be cured, recover, heal, get better. That my current state is the result of something that happened at a single point in time, an unfortunate mistake or accident. But me and Walt are here to tell them that this is just the way it is, and it’s perfect this way.

Throughout his work, Walt Whitman teaches us that nothing happens to us, but for us:

The sickness of one of my folks or of myself…

But they are not the Me myself.

Apart from the pulling and hauling stands what I am,…

How can a disease that causes muscle cells to slowly die, leading ultimately to heart failure and expiration, be a favor? How is having to turn down job after job, opportunity after opportunity, and miss out on relationship after relationship and fun event after fun event, not be a result of a terrible thing that happened to me? How could it possibly be a gift given to me?

…I hasten to inform him or her that it is just as lucky to die, and I know it…

…Undrape! you are not guilty to me, nor stale nor discarded…

The answer is simply this: it led me here, to this hour, to this minute, to this moment. A great poet friend of mine taught me that to be here, be now, is to be free.

And you in perfect health, and me, dying, are both here now. We share this moment. What can be more perfect than that?