Wednesday, November 16, 2016

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.


  1. I love this so much. I can't wait to read Monster, and I am so appreciative of her clear, honest advice. You widen my world every damn day, woman. Thank you.

  2. Lots of wisdom here. And yes, powerful.

  3. And Excellent Guest Post and so much Wisdom in it's Message! Thank you for Sharing it Today, it always validates that what I'm attempting to do on behalf of the three Beloved PWD's I'm Caregiver of is not the Easy thing but it is indeed the Right thing. Blessings from the Arizona Desert... Dawn... The Bohemian

  4. I am saving and printing this. I need guidance and this is so well stated without patronizing my naivete. Thank you!



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