Sunday, November 20, 2016

Love is a Verb, Part 345

Crescent Lake, Washington

I slipped away from sunny California and traveled first by plane to Seattle and then by ferry and car to  Port Angeles in stormy but beautiful Washington for a long weekend. I joined my friend, fellow writer and caregiver Jeneva Burroughs Stone, and writer/caregiver Leslie Haynes at the invitation of Heather McHugh, the MacArthur prize-winning poet who founded the organization Caregifted. Many of you who've been reading this blog for years might remember that I received a week of respite several years ago, the first time I'd been away for more than a few days in more than nineteen years. Caregifted provides respite weeks, free of charge, to family caregivers of the disabled who have been doing the caregiving for at least ten years.

That week in Victoria is documented on my blog, and it quite literally changed my life. I grew to love Heather and what she is doing for those of us with these unique, often arduous but also deeply fulfilling lives. Most, if not all of us are exhausted, and while we might have learned some profound perspective, the relentless nature of caregiving for a severely disabled son, daughter or spouse is something that few people -- even close friends and family -- ever understand. I'd say that Heather McHugh is a person who does understand this -- inexplicably, as she has no children of her own. She is a poet and an angel -- and I don't say that lightly.

There is no other organization that I know of that does what she does, and while it's a small one, the impact of Caregifted is deep and intense. Heather invited us to her beloved Pacific Northwest  to have a kind of creative pow-wow to figure out how to keep the organization going. Given the disastrous election, many of us who work with and care for our disabled children and young adults are justifiably terrified at what might happen. We are certain that any services we might receive could very well be cut or drastically reduced. We are concerned about the rights of our children and all people with disabilities and about our ability to fight successfully for them. Disability rights are civil rights, and they will be threatened. There has been real progress under the Obama administration in the areas of education law, the Affordable Care Act and other issues. Many people don't realize that, but there is still much work to be done. The cognitively disabled, in particular, are overlooked, as are the severely disabled, and our lives as caregivers are seriously impacted by a culture and government that doesn't acknowledge or help us.

Caregifted is an extraordinary and very unique organization. Since the election, many of us are mobilizing through concrete action to help organizations that are helping the disenfranchised. I am making monthly donations to Planned Parenthood and to the ACLU. I plan on registering as a Muslim should the Trump administration make registration a priority, and I am ready and willing to do what it takes to resist the mockery of a presidency, the band of mostly white men who surround him and the legion of their supporters. I know that many of you are doing the same, supporting organizations that support people of color, the LGBTQ community, climate change initiatives, Muslim and other religious minorities, as well as women. I urge you to add the disabled to your list. Caregifted is decidedly NOT a political organization, but it is an extraordinary and very unique one. I would love if you'd make a contribution, however small, to Caregifted. Helping caregivers helps the disabled. Rights for the disabled are civil rights. Trust me on that one.

Here's their website. Donate if you can. Stay tuned to hear about screenings of the wonderful documentary Undersung. We are a small group, but you are a mighty one. Share it and tell your friends and family about it.

Thank you!


  1. I think many of us are seeking meaningful forms of activism more than ever now, so to be guided to this, is a gift. I'm heading to caregifted now to do my small part to protect and support Heather McHugh's inspired work and, in the words of civil rights icon MLK, the beloved community.

  2. That sounds like a fantastic organizaiton.

    What caregivers go through is something that I realize I cannot relate with, really, although I have SEEN people who do it and am aware of it.

    You have some great and beautiful responses to standing up in the face of the ugly turn things might be taking against certain groups in this country. I have a bad feeling that everyone of good conscience is going to have to work together over these next four years!

  3. I have definitely been moved in this election to actively support organizations like this. Thank you for tooting their horn. It's the only way we'll ever learn of the good work they do. Not exactly CNN worthy - maybe NPR - while we have it. I ramble. Glad you could visit our stormy gray land again. It's a beautiful place only graced even more with your presence ...

  4. This sounds amazing. I would love to be part of this someday. Now is the time more than ever to put our $ money where our mouth is. I've been searching out where I could help in some small way. Thank you.

  5. Thank you for the opportunity to support those who support you and other caregivers.
    I work with people with disabilities and the changes you fear are similar to mine.

  6. Elizabeth, I am so proud of you. Registering as a Muslim is brilliant.

  7. It sounds like a wonderful and much needed organization.

  8. I too had the privilege of a Caregifted week in June of 2014. I was chosen to receive the respite week in September of 2013. In January 2014, my son passed away from complications of his disease. Dear, sweet Heather still honored the week away and what a gift it was. My husband and I both had the privilege of meeting and spending time with Heather. She is truly a remarkable woman. She is able to understand the need for respite without having ever directly lived the life. Her compassion and understanding are the exception in the world of caregiving. I founded an organization back in 2004 called The Willow Tree Foundation and it funds respite activities for parents of chronically ill/medically fragile children. ( It's on a much smaller scale than Caregifted and primarily serves families in the metropolitan Phoenix, Arizona area. Yes, we need more organizations that recognize and serve caregivers. We need more people like Heather and you. Onward!

  9. Brava, ladies, brava. Good and vital work. All of it. We need you more than ever. Keep speaking up and shining a light for others to see.

  10. Honey-You're in my very State. I am deeply grateful to you and all those who have shouldered the work on behalf of those who are disabled, differently abled, etc. My mother's disability was invisible and she had NO SUPPORT, no deaf community or friends or language. As a child, I had no perspective but now, of course, I do.

    I hope you enjoy the beauty here. May it mirror your beautiful self.

    XXXXXX Beth



Related Posts Plugin for WordPress, Blogger...