img_0319January 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 by a representative 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 nauseam, 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 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 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

Tags: Boggs Center on Developmental Disabilities, Civil Rights, Disability Rights, Ed Roberts, Gwen Ifill, Indivisible, John Lewis, Meryl Streep, Serge Kovaleski, Women’s March

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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.

What is a good man but a bad man’s teacher?
What is a bad man but a good man’s job?

Lao Tzu

  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 by a representative 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 nauseam, 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 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 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

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 nasty women 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.

The first draft that I started back last year, was my attempt at a crafty Christmas gift. 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. I’ve pulled out all the photos and videos I was weaving in my initial ambitious undertaking in favor of just getting something out to you today, the old fashioned way. With words.

What is a good man but a bad man’s teacher?
What is a bad man but a good man’s job?

Lao Tzu

  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 (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.

  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.

  1. Nothing About us without Us. Nihil de Nobis, sine nobis.

-a slogan used to communicate the idea that no policy should be decided by a representative 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 nauseam, 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 our first Partners in Policymaking session. ** 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 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.

Belated Merry Christmas. March on!

I love you.

J

 

  • The best lack all conviction while the worst
    Are full of passionate intensity.
    =Yeats,  The Second Coming

** http://rwjms.rutgers.edu/boggscenter/news/News_Fall2016.html

***And if anyone else is reading this, thank you so much. Please feel free to share all or part. Or don’t. Simply listening to my voice is a greater kindness than you can know.

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