I’ve been having a conversation with my friend Julie Rose. Julie has just been diagnosed with Lupus and has become visibly disabled. In response to my piece about disabled people as help objects, she wrote to me and said that she really couldn’t wrap her mind around what being a help object meant until she began to navigate the world with a visible disability. Now she understands it excruciatingly well.
What Julie has to say is so right and so clear that, with her permission, I am sharing it here. She writes:
Before the last few days, I was confused by the term “help object.” It took me less than 48 hours of being a “public cripple” to know what it means.
1. It means that if you offer me help and I don’t accept it, I’m an ungrateful, ungracious asshole. It doesn’t matter if what you are offering me is useful or not. It doesn’t even matter if what you are offering might be life threatening to me. I must say, “thank you” and accept it with total aplomb.
2. I can’t have a sense of humor. If I do, you will be confused and think I’m fine and feel duped by my asking for help. Therefore, I’m a scam artist, not a cripple.
3. Since I’m home bound, I must have nothing to do and no schedule, so you can barge in on me any time and you can also not show up or call when you have made a commitment to do so. After all, I’ll always be here, in bed, while you are busy with whatever a real life has to offer. I shouldn’t complain. Again, I’d be a whiner or an ungrateful asshole or both.
4. If you don’t follow through with what you promised you’d do, I must still be gracious and say “thank you.” I can’t say it put me out because in your eyes I have no life.
I don’t think I’ve read anything that has made the privilege of Ability quite so clear to me. This level of privilege is stunning. Privilege, in and of itself, isn’t something that one can escape, but it’s something that one can use well or badly. In the kinds of situations that Julie talks about, it’s being used badly.
To use it badly means to treat ill or disabled people as though we belong in some whole other category in which the rules of basic decency do not apply.
Do want to give help? Then ask what help is needed. Do you want to visit? Then ask what a good time might be and show up. Are you wondering how someone can have a sense of humor and be ill at the same time? Stop wondering and start believing.
I fundamentally do not understand why these are such difficult concepts. Do people suddenly lose their rights to be treated like human beings because our bodies change? No. We don’t. Why is this truth so hard to grasp?
© 2013 by Rachel Cohen-Rottenberg