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Monday, February 19, 2018

ktf


Why are our days numbered instead of, say, lettered?

- an old Jewish joke


Following is a letter, a sort of post-mortem I wrote a little over a year ago that feels more relevant than ever, given the steady barrage of bad news and threatened rights.

In this digital age of gifs and 140 character limit tweets, I think there is a place for old-fashioned letters, for more expansive writing to and for a beloved reader,  telling stories in a way that links them with someone else's experience. I see this blog in a similar way, as a means to make a human connection. 


So please, leave a comment - I'd love to know you are out there!
xxoo
jth




January 2016
Dear S,
I promised you a letter in late November, back when we were both still reeling from the Election results and here it is the inauguration, with celebrations and protest marches in full swing, the end of grace and the start of something else we still can’t name.
I’ve written at least 30 pages since then, kind of an emotional purge of anger and grief and frustration – not new feelings, I admit. I waited for them to swirl around like that creamy foam in coffee that eventually melts and sweetens the brew (I know you take yours black; you miss out on that sinful morning alchemy) but maybe that’s the wrong metaphor anyway, maybe it’s the dregs that sink to the bottom, something far less graceful. But like those dregs, an analogy I keep hearing is of hitting rock bottom, that place where you feel no choice but to act, to move forward as a way to save your life.
I know there’s been much anger-fueled and humorous embrace of our nastywomen selves, but I hope that there’s an equal impulse to celebrate our kindest nature: not just the outpouring of generosity reserved for natural disasters when we all join hands and pull people out of flooding homes and burning buildings, but a generous spirit we could so easily make manifest every day. I share the Dali Lama’s assertion that Kindness is my Religion, but I also think it could be our greatest rebellion in the coming years. So in defiance of this dark day I am temporarily unplugged to complete this letter filled with love, and fueled by a desire to connect, as radical an act as I can imagine.
I’m not a brilliant artist and knitter like you (I seriously almost flunked Home Ec because I couldn’t sew a straight line) but I’m a good weaver of words, and I wanted to give you a woven object of hope: some stories and news briefs about perseverance, because that is how we create change and how we survive.
1. The first piece of good news I wanted to share was from the Fall, when John Lewis and his collaborators won a National Book Award for the 3rd volume of March, his civil rights graphic memoirs. This was well before he was in the spotlight in the creepy high school bullying way that is hard to believe coming from an incoming President (to paraphrase: Johnny said something that wasn’t nice. I think he’s a loser. He’s so sad. He better watch it or else my billionaire friends and I are gonna tweet so hard that he’ll be praying to Alexander Graham Bell for mercy.)
I remember meeting Lewis at the Brooklyn Public Library, when he signed my book [the 2nd volume of the trilogy].  He was with his young collaborators, and I loved their inter-generational bond – it’s one of the “interstitial” aspects, along with class, that I think gets downplayed in discussions of cross-sector collaboration.  I’ve always liked socializing and working across generations so it heartened me to see them together.
And then there was Lewis himself, who was so cordial and courtly, in a Southern manner, remarkable in a man subject to a crueler Southern narrative, being beaten within an inch of his life on Bloody Sunday.  He calmly asked me my name, and to whom to inscribe it to, as if there wasn’t a long line behind me, including my friends’ son and his entire middle school class, waiting with their books in hand.
It reminded me a bit of Pema Chodron. I think I told you that story, how I was walking on the High Line in summer on a beautiful day, and there amidst the sweaty throngs stood Pema, in her maroon robe, looking frail yet radiant. And as if in a dream I went up to her and said “OMG! You’re Pema Chodron!”, which is my go-to ridiculous response to meeting famous people I admire, as if they needed a reminder of their identity. But it wasn’t a dream and she looked at me serenely, like I was the only one on the High Line, in New York City, in the whole world, and she asked me my name and smiled and I babbled on about reading all her books and told her about her retreat we went to in Vermont (Remember how great it was staying in your tent? And the stars lighting up the night sky?) Anyway, she had that enlightened Buddhist thing going on where you focus on the person you’re speaking to without ego or judgement, just in the moment with this other sentient being.  It’s really magical.
So it felt kind of like that with John Lewis. And even though he’s my hero I asked him to sign it to B, because it felt important, like a legacy to pass along. Maybe someday he’d show it to his daughter, and say “Bubbe met this great man once, and he signed this book to me.”  And he’d beam, remembering what a fabulous mom I had been…excuse me for delving into fantasy for a minute there.  But the book signing was real, and cherished. So that was 1.
Sometimes the best are full of passionate intensity.
2. was sad news with a twist of hopefulness, when Gwen Ifill died at age 60 from cancer. I don’t think you watched her much, but I was a big fan, as was my mom, who went to hear her speak at Bryn Mawr, her alma mater. She said it was wonderful, and at the end, because it was her birthday, everyone sang to her and they brought out a cake and Gwen beamed. That’s how I always picture her, beaming.
Growing up we were kind of PBS nerds, back when nerd wasn’t something cool. I used to lament that while all the other dads were watching football, mine would be watching a 3-hour documentary on ancient Greek civilization. But secretly I was proud. We all know my Dad is the best. And my Mom too, taking her politics and ethics seriously. So we both looked to Gwen as an ideal: a woman in the public eye who was smart and polished and gracious. She was a role model and generous mentor to a generation of black women journalists, but I think she had an impact on all sorts of women long before the Lean In era. She really had to make her own way, persevering and proving herself to sexist and racist colleagues who underestimated her talent and resilience. She helped show a generation or two how to yield power and maintain your dignity, to share your voice and help others to share theirs.  And she always seemed to be having fun!  If there’s any woman on TV that I wanted to be like, it was Gwen.
When she died, there was such an outpouring of love and appreciation, I had no idea I was a member of such a large and vocal fan club. And while I read a lot of laments of the timing being auspiciously grim, given how much her voice and presence would be missed in making sense of these next four years, I found it unexpectedly uplifting that while so many people had voted for someone who used his power to berate and humiliate, so many others mourned the loss of someone who was his polar opposite, a true class act.
3. Nothing About us without Us. Nihil de nobis, sine nobis.
-a slogan used to communicate the idea that no policy should be decided without the full and direct participation of members of the group(s) affected by that policy.
And while we’re on the subject of journalism and humiliation, let me get to 3. Which starts with someone you’ve likely never heard of (Ed Roberts) and someone who you have ad nauseum, although you likely don’t know his name (Serge Kovaleski).
I admit that I had never heard of Ed Roberts, the founder of the independent living movement for individuals with disabilities, before my Partners in  my Partners in Policymaking program. Roberts transformed from an adolescent who considered taking his own life after his polio diagnosis to a man who became a national advocate for the value of every person. As with other civil rights movements in this country, Ed’s life’s trajectory points out so much change that we take for granted. And so much that we need to defend and protect.
He and his mother had to fight the local school board to get his high school diploma, which he initially was denied because he didn’t fulfill the requirement for physical education, a tall order for a quadriplegic. He later pushed to be accepted at UC Berkeley, becoming the first enrolled student with severe disabilities. He was admitted in 1962 on the condition that he live in the campus medical facility, removed from his able-bodied classmates. As a student he paved the way – literally – for others through his “Rolling Quads,” the name he gave for the small group of quadriplegic students who followed in his path. He put disability rights in a civil rights framework, in keeping with other political movements on the Berkeley campus in the 1960s and 70s. Ed and his fellow activist adopted the phrase Nothing about Us without Us. Nihil de nobis, sine nobis.
Underestimated, lacking power or position, they were sick of having others – however well-intentioned – speaking for them. His efforts put Berkeley at the forefront of making college campuses physically accessible, which has since become a legal requirement due to the Americans with Disabilities Act and other federal legislation.  After being told that he was unemployable as a young man,he ended up being appointed by Governor Brown to lead the state’s vocational program. Talk about perseverance and defying expectations!
Which leads me to Serge, the esteemed journalist known as the disabled guy mocked by our then President Elect.  Of all the humiliating, incendiary statements he made, this ranked as the most disturbing by the public [Still hard to wrap my head around having a leader whose hateful and bigoted comments are so rampant that there’s a ranking of them!] Why? Because he was mocking someone who, as many people described, was among our most vulnerable citizens, and needing of our protection.
Or as Meryl Streep put it in her Golden Globe speech: “[Kovaleski] was someone he outranked in privilege, power, and the capacity to fight back. It — it kind of broke my heart when I saw it.”
Now Meryl, and everyone else out there, let’s get something straight. We’re talking about a Pulitzer-Prize winning reporter for the NY Times. The guy studied French philosophy at the Sorbonne, for god sake. He may have a congenital joint condition, but he certainly has privilege, power and most of all, the capacity to fight back if he wanted to!
While people were deeply disturbed by this incident, including parents of kids with disabilities, and those kids who could understand his ridicule, if you listened to adults with disabilities you’d hear another story. Many shrugged it off – sure, it was disturbing and embarrassing to have our incoming leader show the maturity of a 12-year-old brat, but many of them had been dealing with bullying and disparagement their whole lives. What they really cared about was policy: if his administration is going to uphold the hard-fought laws to protect their rights; access to quality education; increase support for employment training and jobs with decent wages; and maintaining insurance coverage for pre-existing conditions. Many were as disturbed by what they felt was well-meaning pity or a need to protect them on the part of the public. as they were by the mocking itself.
I’m really hoping that folks will take that slogan of inclusion to heart: that in all the taking it to the street and protest of the moment, and the long road of activism ahead, we see the trees for the forest. That we open our eyes and hearts to people and groups that often are invisible so they are included in the Indivisible blueprints taking shape, that we gain the awareness to see who is not at the table and make room for them.It’s heartbreaking and demoralizing to have a voice that no one listens to or takes seriously, I know.
As I bounce between despair and hope and ‘all in’ and ‘why bother’, I hope people, .good-hearted, well-meaning people,  will take the time to examine their privilege  and blinders and step outside their comfort zone.  But that’s another story for another time. To be continued, I hope.
I really appreciate you reading this, and hope that somewhere in here you found something that will help keep you buoyed.
Please keep the faith, however challenging that is. You have strength, intelligence, sensitivity and humor, talent and insight and you know how to put them to good use. I can’t think of a greater definition of success.
March on! I love you.
J


Friday, February 16, 2018

grace 2.0

This is a wonderful day
I've never seen this one before.

- Maya Angelou



Restarting this blog, I’ve been thinking a lot about grace and what it means, how my relationship to it has changed over the years.

It used to be an ungraspable ideal – an early tag line was “piles of dirt and tiny moments of grace”  - but I have a better appreciation of grace as more of a verb than a noun, something we practice and try in our perfectly imperfect way to cultivate in the best and worst of circumstances.

Over the past month I’ve listened repeatedly to an interview with Brother David Steindl-Rast on Krista Tippet’s podcast On Being. Steindl-Rast is a Benedictine monk in his 90’s who along with Thomas Merton was a pioneer of dialogue between Christian and Buddhist monastics. He's written about gratitude from a spiritual, psychological and physiological perspective, and is a conversation partner in the growing recognition by scientists and physicians that gratitude is a key to well-being. 

Not for everything given to you can you really be grateful - you can't be grateful for war, or violence or sickness - there are many things for which you can't be grateful but you can be  grateful in every moment. 

it's an important distinction to make, because it's not only normal but appropriate to be upset and saddened by things going on in the world and in our lives. We are not grateful for school shootings, for lack of gun laws, for cowardice and cruelty.  I am not grateful for a lot of the challenges I have in my life, no matter how much people tell me that they are a gift, or that what doesn't kill me makes me stronger. But I am more grateful every day than I ever could have imagined, for all sorts of small gifts that I otherwise might not have appreciated. Joy is the happiness that doesn't depend on what happens as he explains and I am finally starting to understand,

Gratitude and grace come from the same Latin root, gratis, and the more I can access one the more the other grows.  

The Buddhist grace before a meal illustrates that link:

Enumerable beings brought us this food; we should know how it comes to us.

It's grace as an act of investigation, a time to pause and consider how our meal got to the table and our interconnection to those who plant and harvest and transport and sell each item that ends up on our plate.

I've been thinking of that active sense of grace today, as we've just completed V's birthday week. It is a week and not just a day because it is a string of celebrations connecting the various people and places that give him the love, respect and help he needs to thrive. The fact that it is a patchwork rather than the cohesive inclusive community I had worked towards and hoped for has left a sting of anger and disappointment at the refusal and rudeness that we’ve faced.  But all that rejection only compounds the gratitude I feel for the enumerable beings that shows us kindness; that treat V with respect and recognize that he has unique abilities and deficiencies like everyone else; that see me as a person in my own right, eager to share my voice. 
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Thank you Friendship Circle for the kosher cupcakes, for the warmth and fun.




Thank you to V's awesome home therapist for the birthday donuts and all the help with independent living skills; thank you for state funding and Medicaid for providing this essential service.




Thank you teachers and therapists at Celebrate the Children for recognizing our kids' intelligence and attributes.





Thank you congregants at Temple Beth Shalom for singing Happy Birthday to V at kiddish after the sensory-friendly service where you accept him as he is (no photos at shul)



Thank you B for being the best big brother a guy could have, and for being a caring, sensitive and wonderful person.















Thank you aunts, uncles, Zeyde, cousins, friends and neighbors who wish us well and make efforts to include us. Thank you for the opportunity in all the challenges to be a better person, a bigger person, to keep fighting for what is right.  I still have a ways to go but I'm grateful for the opportunity to keep working on it. And therein lies grace.
















Sunday, February 11, 2018

a good life





Here is Senator Tammy Duckworth, who I just heard speak at Jewish Disabilities Advocacy Day in DC this past week. Of all the speakers from the House and Senate who addressed the two hundred assembled self-advocates, professionals and family members, her presence was the most electrifying..

Duckworth became a commissioned officer in the Army Reserve and chose to fly helicopters because it was one of the few combat jobs open to women. She was working towards a Ph.D. in political science when she was deployed to Iraq. She lost her right leg near the hip and her left leg below the knee when the  helicopter she was co-piloting was hit by a rocket-propelled grenade fired by Iraqi insurgents. She earned a purple heart for her bravery and service.

As Duckworth told us she was given everything she needed to succeed - all the therapy and state of the art equipment, including multiple expensive wheelchairs for different uses - because she was a wounded warrior and decorated vet. It's short-sighted to give up on those of us who need supports, she explained, and in fact it's cheaper to supplement equipment, training or a caregiver to help someone to be more successful.

And she's the epitome of success. 
Duckworth was the first disabled woman to be elected to Congress, and the second Asian-American woman serving in the U.S. Senate. She's also the first Senator to be pregnant while in office. Someday she could become our first female, Asian-American, disabled Vice-President. (She was born in Thailand, so she cannot be President.)

Everyone needs to be seen for who they are, not for their disability, she said in conclusion, as she encouraged us to continue advocating for ourselves and our families. And then she left to the sound of our applause, rolling out of the room in the wheelchair that enables her to be another strong, outspoken woman in public life. 





This is my 17 year old son V at his job training internship at Green Visions, a program that provides students and adults with developmental disabilities the opportunity to work and earn through recycling electronics. It's a perfect fit for his spatial and mechanical skills and his delight in disassembling anything he can get his hands on. I used to call him my little deconstructivist because he would take apart every school art project, as well as remote controls and small appliances. How wonderful to see a way to put that compunction to good use!


This photo gives me a thrill equal to that of Senator Duckworth. My son will never run for public office, go to college, do anything that you would consider heroic. But he is in his own quiet way a hero. He works so hard to make progress and overcome a wide range of neurological and communications challenges. He remains joyful, determined, and increasingly self-assured as he finds a sense of agency and increased autonomy. 



There are two words I return to when I think of his future: hopeful and terrified. Hopeful because as I’ve learned since his diagnosis 15 years ago, neuroplasticity of the brain does not have a time limit; during adolescence and adulthood, the brain continues to display capacity to adapt to an ever changing environment, showing both functional and structural changes throughout a person's lifespan. I see through his progress that there is no expiration date for positive growth. But to leverage that capacity requires individualized education, therapy, and training techniques. There is a video that accompanies this photo showing a job coach and teaching aide helping V to stay on task, to complete one step before going to the next, in order to succeed in this job. I see him making progress in so many ways. With the right supports, he most definitely is capable of leading  a productive, fulfilling, good life.




Which is why I am terrified.  When Congress first passed IDEA (Individuals with Disabilities Education Act) over 40 years ago, the federal government promised to pay 40 percent of the cost of educating students with disabilities. In fact they've never even come close, currently paying only 16%, and leaving the rest to school districts and states.


This leaves millions of students in a precarious position, subject to municipal budget deficits and local measures to de-fund needed services, especially in poorer districts and more austere states. The US Department of Education just completed an investigation finding that Texas actually incentivized school districts to deny services to eligible students. 

And things will only get worse in five years, with the sudden elimination of educational options when V turns 21,  a descent so dramatic that parents and caregivers call it "falling off the cliff."  We will soon have more intellectually and developmentally disabled adults than at any time in our history, and we are nowhere close to having enough services for them.  

The new tax bill will make a horrible situation even worse, given that the tax cuts to the wealthy that are the heart (and heartlessness) of the bill create enormous pressure to slash federal programs like Medicaid, including home and community-based waiver services, and other programs that allow people with disabilities to lead healthy, satisfying lives..

While many other people my age are planning for retirement, looking forward to the freedom to travel and enjoy life, we research other countries with lower costs of living, other states with better services (although that’s always subject to change), and we identify existing good programs for adults with developmental and cognitive disabilities in order to add our names to waiting lists that stretch five years or longer, a consequence of the growing number of disabled adults desperately in need of services.


None of us knows what the future holds – it’s likely disability, addiction, mental illness, and ongoing major health needs will touch all of us in some way. The fact is we're all in this together. Let's start acting that way, and fighting for a future where we all can flourish.