I’m not a spokesperson for anyone, but myself. I once thought I might have some insights to share with and about the disabled community but this has turned out not to be true. When an organization that represents this community was looking for local authors to speak at a fundraising event, I imagined I was the perfect candidate.
Instead, a woman who wrote a book about California bungalows was selected. The following year I was passed over for a Marin County housewife who is married to a world-renowned rock star. She wrote a memoir about who she slept with during the late ‘60s and early ‘70s. Obviously, she’s a lot more interesting than me.
I assumed I might be a good person to represent my North Oakland hood in print, but several neighbors have told me my columns make our block seem dangerous. “It’s a nice place,” they say. “Try to make it sound that way.” I agree with them. I love where I live despite car thefts, drug busts, and a recent graffiti plague. Houses here regularly sell for over half a million dollars.
Surely, I must be a voice for the often silent, overworked, underpaid, and sometimes ignored caregiving community. But given the nature of this occupation, it doesn’t leave a lot of time for extracurricular activities such as reading or contacting others. I have met a few women who are caregivers for their disabled husbands. What I have found, (and this is backed up by statistics), is that there is a high rate of divorce among couples in which one member has acquired a catastrophic disability.
Sometimes I write about my relationship with the people who live in our house and help with my husband’s care. I record the activities of a little girl from Hunters Point, now a teenager, who stays with us every summer. These columns haven’t always been well received.
I even got a complaint letter after publishing an article about my dog.
Nonetheless, I write because I think I’ve got something to say that may be of interest to someone, somewhere, in some way. Mostly, I try to explain the physical and emotional terrain Ralph and I navigate daily so that readers can better understand our situation and the lifestyle of those in similar circumstances. Despite the Bay Area being a tolerant, progressive place, I have witnessed behavior that has left me perplexed and disappointed.
For example, we’ve arrived at nearby movie theaters and found the disabled seats occupied by people who are not disabled. When we’ve asked them to move, we’ve sometimes encountered indignation, including the common complaint, “You should’ve gotten here earlier.” My lame response is, “We would’ve if we could’ve.”
Once, while in Trader Joe’s, a woman ran a shopping cart over Ralph’s feet and kept going.
Four years ago Ralph and I went to dinner with a young woman who is a high-level quadriplegic. I sat between them, and alternated giving each bites of sandwiches and sips of drinks. She told me she had interviewed a man we knew for an attendant position.
“It won’t work,” she said.
“Why not?” I asked. “He’s helped us for years, and he’s very good.”
“I don’t think he’d be comfortable inserting or removing a tampon,” she said.
I had to put her sandwich down and catch my breath. I’d been married to a C-4 quadriplegic for over eight years and it had never occurred to me that this was the kind of help she, and others like her, needed.
This is why I write. It’s not always easy or fun, but it’s experiences like this, and the people I have met since my husband’s accident, that inspire me. Before Ralph became paralyzed I had a nice life. But we can’t go back. I’m grateful for what we have, and for the opportunity to share it with you.