Visibility

This is what Roger Ebert looks like these days.

Ebert was diagnosed with cancer of the salivary gland a while back, cancer that ultimately spread to his jaw. A portion of the jaw was surgically removed, and so far two surgeries to replace the lost bone have been unsuccessful.

He hosts an annual film festival at the University of Illinois, and this year’s festival was last week. Ebert says a lot of well-meaning people discouraged him from attending, but he went anyway. Here’s why, in his own words:

I have been very sick, am getting better and this is how it looks. I still have my brain and my typing fingers.

Although months in bed after the bleeding episodes caused a lack of strength and co-ordination, the Rehabilitation Institute of Chicago restored my ability to walk on my own, climb stairs, etc. I no longer use a walker much and the wheelchair is more for occasional speed and comfort than need. Just today we went for a long stroll in Lincoln Park.

We spend too much time hiding illness. There is an assumption that I must always look the same. I hope to look better than I look now. But I’m not going to miss my Festival.

Good for you, Roger.

There’s still a tremendous stigma attached to making disability visible, and because it’s usually not visible, folks often manage to forget that it exists at all. I’ve written about this in connection with my sister’s illiteracy, and just a couple of days ago Rob Rummel-Hudson described an incident in which a woman yelled at his congenitally mute daughter on the playground for not answering when she spoke to her. (Schuyler held out her Medic-Alert bracelet to the woman during the tirade, but the woman didn’t understand why.)

Ebert did what was right for him, and that’s enough. But he also intended, clearly, to do something bigger. Good for him.

From Brooklynite