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!

Happy NaFaCaGiMo, folks! Day 16 with a Brilliant Guest Post

Nichole Montanez incredible photo project: The Face of Cannabis

So, I haven't been posting about NaFaCaGiMo since the sh**tstorm we called an election happened last week. After peeling myself off the floor, though, I'm galvanized like never before to RESIST. My friend and fellow caregiver, Jeneva Burroughs Stone, posted a lengthy thing on Facebook today that is particularly relevant to not just the sh**storm, but also to caregiving and disability rights. I hope that you'll read it and share it far and wide. 

If there are any Trump lurkers around these parts, please read it because it's about people like SOPHIE whom you profess to love and about the millions of people like her. 

Many of us have been working in the so-called trenches for decades on issues of social justice. Last night I attended the Realm of Caring benefit that honored some of those people -- people who have been and continue to fight for our children with epilepsy and other significant health disorders so that they have access to cannabis medicine. The event raised money to help children and families who can't afford the medicine get it. We have and continue to fight against very entrenched ignorant beliefs and a medical/industrial complex that is tyrannical. We are motivated because our children's lives are on the line. What happens when you start advocating for your own child in any system at all, you realize quite quickly that there are LEGIONS of people that need help and that it is your responsibility to do what you can to help them. That's what I'm doing. It's really hard work, and you have to be prepared to argue and fight and make enemies. As the great MLK said, "The arc of the moral universe is long, but it bends toward justice."

Jeneva's incredible new memoir, Monster is available for pre-order. Go do that and then come back and read her powerful words: Now here's Jeneva's powerful post:

I haven't said much about the election recently, nor whatever it is I will do to resist an incoming administration I feel to be wrong, insofar as the attitudes it has projected and the personnel it has appointed thus far.

I've been standing up to injustice in a very individual, almost lonely way for over 18 years: fighting the education system, the medical establishment, the state. I haven't been shy about saying that I have to fight Democratic politics as often as Republican politics--that's the nature of disability bias. It comes from both sides, and it's extremely difficult for able-bodied people to break out of the disability = tragedy mindset and move toward thinking that disability = another way of living. And equally difficult to resist placing persons with disabilities within capitalist values (what are they worth, anyway, to society?) when that question is not asked with such disconcerting openness in major news outlets as compared to other disenfranchised groups.

I've determined that my own energy will be sucked into my continuing struggles for Robert's equality and independence, and I hope that I am able to frame these broadly enough that my efforts will benefit more persons than just him. This fight will sometimes put me at odds with many of you, but that is to be expected. Insofar as your objectives propose true and not symbolic inclusion of persons with disabilities, I will do whatever I can to help, but my own energies have to be primarily with PWDs, as we/they are the first to be cast overboard in a storm.

I do have advice for whoever wants it about confronting and resisting authority, although many of you have been activists for some time and probably don't need it.

First of all, remember that demonstrations and open statements of resistance are certainly steps in the right direction; however, these serve the purposes of mobilization. They accomplish little in and of themselves by themselves. You have to put in the work to organize: getting permits, creating lists of supporters, setting agendas that involve more than making calls to congress. As many of you have discovered, each office has multiple phone lines and the opposition will find ways to avoid you.

Second, and following upon the first, you must listen, both to the opposition and to the variety of opinions within your own group. You don't need to listen to the opposition out of empathy (although bridge-building can be important): you need to listen to grasp their positions and potential strategies. If you don't know what these are, you cannot outflank and out-maneuver them. You also need to understand the personalities and motivations of the opposition leaders in order to locate what you can use to your advantage. These are the strategies I use the most in approaching the wall of opposition I face on behalf of Robert.

The Democratic Party has, to my mind, erred in refusing to listen to its internal critics, and, thereby, passed on forming a broader coalition. Avoid the mansplaining, overbearing tactics common to many organizers--the "I know best, I've done this longer than you," kind of thinking, be they men or women.

Third, you must be willing to perform acts of civil disobedience. That's where I am now with Robert's needs: trying to figure out what I am willing to do, what consequences I am willing to accept and what consequences are too dangerous for my son. No is a powerful word, but it must be used with care. Consequences are real and you must accept they will be real.

Fourth, you must take the energy you are generating now and move even beyond organization toward the massive project of selecting and running individuals with goals akin to your own for public office. This is a great deal of work, and two years to the mid-term isn't long. And both President Obama and Senator Sanders have made good points that getting your points of view into the political decision making process is essential. Voting is good; getting more candidates in the race is better.

Fifth, and I say this to both liberals and conservatives (and progressives): vandalism, threats and violence will do little for your cause in the long run, other than to give others evidence to repudiate you. For example, the threats issued toward my family by Maryland's Department of Nursing Services has done nothing more than stiffen my resolve.

Sixth, always be nice to the army of administrative persons who help provide access to key persons. Be nice always to those who help you consistently because it's the right thing to do. But "being nice" to authority doesn't work much. As a woman, I had a hard time with this, letting go of it, but I recognized early on that this would just be taken as a sign of acquiescence by, for example, the school system. They won't like you, but you will get your message across. Switch up your messengers when you need to--good cop/bad cop. That's what Roger and I do when we realize the same thing said by a male voice will trigger a different response.

Seventh, learn the law, learn the loopholes, and don't rely on rhetoric to get you to your objectives. That rallies support for your side, but is easy for the opposition to ignore or downplay. As I have discovered, I can shout about injustice all day long, but until I develop reasons for why these are injustices and put those pieces into play, I get nowhere.

Eighth, you will have conflict with some of your friends. I have, too. Some have told me I am too emotional, too prone to rant. I see what I do as exemplifying injustice and pointing out what's wrong. This metaphor isn't quite what I would like, but my earth science teacher once told me, "stick to your guns," when I, in uncertainty, changed my answer on an oral exam to the wrong one because I was looking for some sign from him that my original instinct was the correct one.

I hope this hasn't been patronizing, as I have not meant it that way, and I'm sure it duplicates what some of you already know. See you out there.

The Separation of State and Family: Notes on HRC, Feminism, Disability and Family

I haven't written too much about politics on the old blog of late, except for the occasional jab or rant and disbelief over Republican insanity. The main reason for that is the whole thing gives me agita. I also have no idea what's going on with them (the Repubs) and haven't even ventured to ask members of my own family what they're thinking and whom they might be voting for as Republicans because -- well -- I don't want to know. Separation of family and state, if you will.

 I'm undecided about whom I will vote for in the primary, although I lean quite firmly toward Sanders. The reasons why are numerous -- they have to do with his positions on equality, on medical marijuana, on healthcare and education -- and while I understand people's reservations about Sanders' ability to do what he proposes, I'm more inclined to feel, at the gut level, that HRC stands for almost exactly what I'm not. In other words,  I'm not convinced that HRC is the right woman for the job, but if she should win the nomination I will of course vote for her because -- well -- really. 

This morning I opened Facebook and read something by my brilliant friend Jeneva Burroughs Stone that I wanted to share in total with you. Jeneva is a polished advocate for the disabled, the mother of a disabled young man, a poet and non-fiction writer that has numerous degrees and public policy experience. She writes, as always, with the perfect combination of righteousness, knowledge and passion. You should know that we as mothers of the severely disabled speak for our children as well. I think Jeneva speaks for Robert, here, and I will echo her voice for Sophie, too.

As Jeneva told me privately: "I can't have equality if Robert doesn't have equality."

Let's discuss:

Two articles crossed my desktop this morning that remind me why I cannot vote for Hillary Clinton in the Maryland primary. Both concern HRC and Melinda Gates' efforts to promote microfinance and close the time gap in unpaid labor--for third world women. Certainly, these efforts are admirable; however, only one of the articles pointed out the obvious--that while these efforts attempt to raise the ceiling for women, the Clinton welfare reform package, by shifting welfare to the states, removed the floor for American women. We are now "free" apparently, to fall as low as the states will let us.

I include myself because caregivers are also caught up in this mess of Medicaid waiver and state program block grant madness. Caregivers across the U.S. (mostly women who care for disabled and/or ill family members) face an ENORMOUS unpaid time gap. Many of us cannot work at the jobs for which we were trained, nor can most of us work full-time because we spend anywhere from 6 to 16 hours per day in unpaid caregiving activities.

Closing institutions is a great idea; however, no state offers 24 hour care at home, even for individuals who require 24 hour care, thus shifting unpaid labor mostly to female parents. When I talk about "caregiving," I'm not talking about "parenting." Those are two different things. It would be fabulous if I actually had more time to be Robert's parent, as opposed to his caregiver. Caregiving involves hands-on personal and medical care, as well as the reams of paperwork, emails, phone calls and accountability tasks required to coordinate the various programs that serve any person with disabilities. In addition, there are significant time burdens associated with accessing treatments, maintaining prescriptions, communicating with multiple physician offices, etc.

And I don't want a "program" that pays me to do this, unless that program is willing to compensate me at the wage I would earn for doing work for which I am trained, which is about 10 times minimum wage, and 3-4 times the current wage for a home health aide. Otherwise, we're looking at a wage gap on top of a time gap. And don't get me started on the fact that the caregiving support I DO have is primarily from female workers who are paid very little for skilled labor. Yes, I live in a state that's willing to supplement the pay of construction workers by an enormous amount, but won't pay a female LPN a reasonable wage. More comparisons--yes, I rent an office to get away from the house and get some work done. Is it a luxury? Maybe. But my rent is $440 per month. At a minimum cost of $50/hour, I would be able to purchase less than 30 additional minutes of nursing care per workweek day with the same funds.

HRC and Melinda Gates seem willfully ignorant of the problems working-class & poor women, as well as female caregivers face in terms of the unpaid labor gap. More "programs," especially at the state level, are not the solution. We don't want "help." We want equality. We want government and society to recognize a civil commitment to all citizens to reduce inequality. As one journalist pointed out--the Gates Foundation wants to pay for cell phones for women in third world countries, but who's paying for cell phones for poor women in this country? Who pays for long-term caregiving in this country? And who's paying for it in third world countries?