There is a wonderful Yiddish proverb that describes those carrying troubles: "God gave burdens; he also gave shoulders." But sometimes those shoulders need help. In the case of this CAREGIFTED fundraising initiative, writers--from world-renowned to beginners--are providing that help as writers bid on manuscript critiques provided by celebrated authors.
I first heard of CAREGIFTED from my friend, author Robin Black. CAREGIFTED is a non-profit founded by MacArthur winning poet Heather McHugh, to provide weeklong respite vacations for long term caregivers to severely disabled family members. Robin, the mother of a special needs child herself, and a CAREGIFTED Board Member, has devised a fundraising scheme unlike any other. On November 25, more than three dozen of the world's most renowned authors are selling manuscript critiques to emerging writers, with all proceeds going to CAREGIFTED. I asked Robin a few questions about the organization and about this initiative.
RSM: Can you tell me a little about how CAREGIFTED began? It seems like an unusual project for a poet, like Heather McHugh, to take on.
RB: Heather's an unusual woman - in all the best ways. Five or so years back, when she won the MacArthur, she also learned that a young couple in her close circle had a new baby with severe disabilities. As I understand it, and we have talked about this a lot, she was thunderstruck by the reality of what the rest of their lives would include, in terms of nonstop physical caregiving, and all the strains inherent in that. Not to mention the heartache. And those realizations opened up a whole world to her: that of people whose lives are dominated and defined by the medical condition of someone for whom they care. Heather decided to try to do something to help as many of those people as she could, and so, with the grant money she had just been awarded, she founded CAREGIFTED.
RSM: How did you get involved?
RB: I kind of elbowed my way in. I have a child with special needs, though not nearly as severe as those in the care of the people we help. And I grew up in a home with a grandmother who was paralyzed from the waist down. I have always had a keen awareness of how a life can change direction drastically when the kind of functions many of us take for granted are absent or impaired. And I had a connection to Heather through the MFA program I attended, where she teaches. I used good old Facebook, and wrote her, just thanking her for thinking of people in this sort of need. That was my first email.
After that, and a gracious response from her, I sent a slightly pushier one, full of my own thoughts about what caregivers need, and of ways to raise money. I described it as "unasked for advice" which it was, and I apologized. But Heather is so open, and I guess she saw something sincere behind my presumption, so before I knew it I was on the team, and then a Board Member, specifically charged with finding ways to use the arts to raise money. This has been important throughout, and in fact filmmaker Adam Larsen, whose amazing film about autism, Neurotypical, was aired on PBS last year, has been involved from the start making a film about CAREGIFTED that should be complete in 2015. He has filmed many of the getaways and also filmed the families in their homes to give a sense of what it is from which they are taking this break.
RSM: What are the respite vacations actually like? Where do the caregivers go?
RB: I guess one answer to what they're like is miraculous. It's hard for people to grasp but for many people, this single week away is the only week away they'll have from full-time, hands-on caregiving for decades, often for the rest of their lives. And you could say, "Oh, it's just a week!" but that week, according to the people who have had the chance, can be life-altering.
And I've always thought it goes beyond the week. It's also just the fact of knowing that there are people who care. When you've been hand-feeding, toileting an adult child who cannot speak, for twenty years of more, and are unable to participate in life without constant worry and constant fear for that child's well-being, well, it's hard for me to imagine a lonelier existence. It must so often feel like the world has forgotten you. But Heather is holding up a banner saying "You are remembered! Somebody cares!""
The trips themselves are increasingly taking place in Victoria, British Columbia, and have involved everything from boat rides, to shopping expeditions, to special meals, to massages, to days of having absolutely no demands. Heather herself has been on many of them as a companion and to facilitate the activities, but thankfully we are able to do more than any one person could attend. So we are in the process of locating more people who can serve in that role of "concierge."
RSM: And now you are having this fundraiser. How does that work?
RB: As I said, from the beginning Heather wanted this undertaking to include a big component of artists helping caregivers. There's a way in which it's an intuitively logical connection that people whose lives are devoted to creativity might find ways to use their talents for others. The arts are so much about reaching out to people one doesn't know, trying to say something meaningful about the human condition - whether in words or with music or through film or painting. CAREGIFTED, like all non-profits, needs other kinds of contributions, donors, and grants, but this was always part of the plan.
My own very small contribution has been to conceive and spearhead now two manuscript critique sales. This time around, on November 25th, we'll be offering for sale critiques from some of the world's most admired and accomplished writers. So, Billy Collins will be "selling" the reading of a poetry manuscript, by an emerging poet. And Elizabeth McCracken, will read an entire novel - up to 200 pages - by an aspiring novelist, and will give a written response. And the list goes on and on. All proceeds go to CAREGIFTED, but the benefits are much shared by those who receive these amazing consults. We have three dozen or so participating authors, and in some cases, this is the only way to receive feedback from them.
It takes place on November 25th, and the information is on the CAREGIFTED website. For writers who want such responses, but aren't in the kind of formal setting like a school where that's available, this is an incredible opportunity.
RSM: And what does the future hold for CAREGIFTED?
RB: Great things, I hope! But the truth is, it's early days still. All initiatives face decisions about how much to expand, what broader projects to take on - or not. Right now, if we can keep sending these overworked, underappreciated people away for just that one week; if we can raise awareness about their lives; if we can see this amazing film by Adam Larsen to its completion; and if we can keep Heather's initial vision alive; we're satisfied. But in the future? Wouldn't it be great to have larger and larger networks for caregivers? Greater and greater ways to diminish that sense, that reality, of a forgotten, underserved group?
I have a lot of faith that what Heather started may very well lead that way. And thanks so much for asking, Randy! You're now officially part of the team.