My Ani DiFranco T-shirts are fraying. Not before time, you understand: They’re from a 1997 concert in Anchorage, Alaska, which I reviewed. Originally they belonged to my daughter, who went to the concert with me.
The gray tee features a DiFranco verse:
“So I’ll walk the plank and I’ll jump with a smile/If I’m gonna go down I’m gonna do it with style/And you won’t see me surrender, you won’t hear me confess/’Cuz you’ve left me with nothing – but I’ve worked with less.”
The other shirt, a kind of an old rose/mauve color, bears a single lyric:
“Every tool is a weapon if you hold it right.”
Neither of us could have known that would be the last summer of Abby’s first life. Seven months after that concert she was on life support in the UW Medical Center’s intensive care unit. Guillain-Barre syndrome paralyzed her right up to her eyeballs and nearly killed her. She’d recover function but would never be the same.
Five years ago Abby donated a bunch of clothes to a charity thrift shop. She gave me first pick, though, and I took the T-shirts. I thought it was because, having recently left a bad long-term marriage, I wanted to keep positive messages nearby. I now know that wasn’t the real reason.
What I’d hoped my daughter’s life would be
I wore the shirts a lot more than she ever did, averaging once a week each for five years. The Ani shirts were among half a dozen or so garments in heavy rotation in those days. At first it was because I was living on very little money and helping to support Abby while she waited for her disability claim. Why worry about getting new clothes when the old ones still covered me decently? Especially since I was a university student whose classmates showed up in pajama bottoms and sweatshirts?
Once I got a part-time writing gig for MSN Money’s Smart Spending blog, I could have bought some new clothes. Instead, I chose to throw most of my money at divorce-related debt. I also continued to prop up my daughter’s finances since her disability check wasn’t very big; after all, she’d been able to work fewer than 10 years, and only part-time for most of those years.
I have been debt-free since early autumn 2007. I finished my degree in December 2009. And I’m still wearing the shirts – but maybe not for much longer since, as I noted earlier, they’re beginning to fray.
Originally this was to have been a post about how to extend the life of your clothes by judicious re-wearing and by hanging them on clothes racks rather than using a dryer. But what’s come out is part reminiscence and part realization: I’m mourning the imminent loss of those shirts because they represent a memory. Specifically, they represent a time when I thought my daughter’s life was planned: College, a fulfilling career, a home of her own, a husband and family.
Instead, she got pain, suffering, a trach scar, and a brand-new life of poverty and separateness as a disabled person in the United States.
Get over it
Abby tried – oh, how she tried! – to become “normal” again. Nine months after her diagnosis she re-enrolled with a full course load at the UW and developed a mania for sit-ups. She had to prove that she was “over” her illness. That she once again had control of her body. That she could do and be everything she ever had because she was not sick any more.
Americans have a skewed idea of disability. We love newspaper articles and TV specials about people who “beat” cancer or who “overcome” cerebral palsy. We can’t seem to get enough of telethons with cute, spunky kids whose lives will surely have meaning if enough people donate to the scientists toiling to cure this dreaded affliction. We like our disabled people in controlled, comfortable doses – say, every Labor Day. And it helps if there’s music.
These motifs give us the comforting feeling that nobody really has to suffer, or that all problems can be solved with chemo and personal responsibility. Along with the rest of us, Abby had absorbed the message that to be disabled is to be less of a person. For half a dozen years she resisted filing for SSI because, she explained later, “I didn’t want to set myself apart.”
She didn’t need to: Our culture is happy to do that for her. We don’t like looking at disabled people. We don’t even like to admit they exist. If you don’t have the decency to overcome your disability, then kindly shut yourself away at home. Oh, and put a scarf over that trach scar, why don’t you?
We want the happy ending – but if we don’t get it, we at least expect happy cripples. We want what the disability rights community sardonically terms the “Supercrip,” the disabled person who is self-sufficient and cheerful and such an inspiration. It’s as if they exist only to inspire us – and, maybe, to make us feel glad that we’re not disabled.
A productive member of society
I can’t forgive myself for my initial reaction when Abby first told me she planned to file for SSI disability.
“Are you sure?” I said.
What did I mean by that?
Are you sure you can’t work?
Are you sure you’re sick enough to get Social Security?
Are you sure you’re not just exaggerating?
Are you sure you’re trying hard enough?
The words came out automatically. In part it was because my family has a ferocious work ethic. Work was what you did, as soon as you were old enough and until the day you died. Not-working was simply unthinkable.
But it was more than that. I wanted to deny that she was disabled because I was afraid of what would happen to her. I was afraid of poverty, of isolation, of the second-class citizenship our culture awards the disabled. In the past I had myself used the phrase, “a productive member of society,” as though people who don’t produce aren’t really allowed in.
I don’t use that phrase any longer.
It will not allow forgetting
For a long time I couldn’t accept the idea that she is disabled. Truth be told, part of me wants to believe that a new drug therapy or a different nutritional regimen will “fix” her. Most of the time I acknowledge that the body in which she lives has changed irrevocably. Disability is part of who she is now. Disability makes her life more difficult, but it does not preclude having a life.
Despite setback upon setback, Abby continues to build herself that life. She’s married, and was able to bid farewell to SSI after finding a work-at-home job with a flexible schedule. May God bless her boss, who understands if she needs to visit the doctor or simply lie down for an hour in the middle of the workday.
Abby’s also writing a PF/disability blog with a growing audience. In fact, she won the People’s Choice division of the 2013 Plutus Awards at the Financial Blogger Conference. Somehow she even finds time to do a bit of freelance writing. Her body may be compromised but her will is very, very strong.
That body was scarred by GBS: trach scar, feeding-tube scar, plasmapheresis port scar, peripherally inserted catheter scar. Abby once wrote a poem that compared each one to “a height mark on my wall.” She also wrote that, “You can’t even tell perfect bodies apart.”
Abby doesn’t cover her trach scar. It healed nicely, a subtle divot that looks a little bit like an umbilicus. Site of rebirth. A scar represents trauma, an injury to a body that will never again be the same but that survives. Maybe not comfortably, or easily, but it lives nonetheless. It learns. And the scar will not allow forgetting. Abby knows that every tool is a weapon if you hold it right.