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Wednesday, September 7, 2011
The Diane Rehm Show submission: Mo Udall and Parkinsons advocacy
Thursday, September 1, 2011
WOULD MO UDALL ATTEND PAN's 2011 MORRIS K. UDALL AWARDS DINNER?
WOULD MO UDALL ATTEND
PAN's 2011 MORRIS K. UDALL AWARDS DINNER?
(Not Without Reservations)
“No place could call itself a city -- a center of civilization -- if it did not provide for the education of its young people and the care of its sick and elderly.” Morris K. Udall
(“Politics and Morality: Where Leaders Fail,” New York, May 26, 1971)
The Mo Udall of my youth, long before Parkinsons was a blip on my family radar (and perhaps his), was an icon of compassionate American leadership. He was a big picture thinker, with the energy and skill necessary to bring both broad and targeted measures to the table and shepherd them successfully into law. He was a man on a mission, particularly when it came to legislation directly affecting the lives of people, especially of those in need, in the here and now.
One of Mo’s early and most significant triumphs culminated in the passage of what became Medicare, the medical care social safety net for not only the elderly, but also people with disabilities. He began helping develop and support Medicare legislation in the early 1960s, in his 1st of 14 terms terms in Congress. (CONGRESSMAN'S REPORT, "Medicare"--The Battle of Madison Square Garden, June 1, 1962.)
Medicare was, of course, enacted as a component piece of the broader safety net, including the Social Security program. For Mo and many of his cohort group, sustaining and contributing to this safety net was not only among their proudest accomplishments, it was a measure of who we are as a country. He believed that “Federal welfare programs...[like] Social Security, the income tax, Medicare and (a century ago) free public education...have made America stronger and enriched even those who have been taxed the most. Like Portia's ‘quality of mercy’ they have enriched both ‘he who giveth and him who receiveth...’” ("Myths and Politics," North Carolina, April 20, 1966.) In his 1976 Presidential run, Mo’s position on Health Care was unmistakeable: "Why in America, with our immense wealth, should the poor get sicker and the sick get poorer? ...America is the only industrialized nation in the world which does not provide basic health service as a universal right. As President, I will make sure that we do." ( Mo Udall for President 1976 Campaign Brochure)
Here we are, a half century later. A moment when perhaps the hottest political issues in the country – health care reform, entitlement programs, dismantling of Social Security and Medicare, etc. – threaten to undo some of Mo Udall’s most valued programs and gut the potential to realize some of his cherished dreams. Would Mo come to an awards dinner in his name hosted by an organization that has essentially ignored those issues and by choice chosen to not engage in this debate? Not without reservations!
If Mo decided to attend this year’s attend the Parkinsons Action Network's 2011 Morris K. Udall Awards Dinner, my guess is he would take the opportunity to issue a strong challenge to the Parkinsons lobby to reevaluate its historical priorities and place advocacy to secure research dollars in proper context rather than dominate its agenda. Everybody wants to find a cure for Parkinsons (except perhaps for some with financial stakes in treatment) and no doubt Mo would still be proud of the Parkinson's Disease Research Act of 1997 that bears his name. Of course, as Mo is famous for saying, “If you can find something everyone agrees on, it's wrong.”
For research dollars to be the sole goal of the Parkinsons’ lobby, or even the primary goal at this moment in time, is ludicrous. And in my view, an affront to Mo’s legacy. If Mo was with us today, does anyone think he would be silent on the prospect of the elimination of Medicare and Social Security? How might he reshape PAN's framing about The Federal Debt Ceiling Debate and Its Impact on Health Policy: We Need Your Voices -- which abstracts from all of those social issues so critical to our community??
Please ask PAN to take a stand on these major social issues that affect so many in the Parkinsons community. Mo might proudly note at his Awards Dinner that his Democratic has “been the party of the disadvantaged in our society,” as he did in his Keynote Address at the 1980 National Democratic Convention. But in the same breath, he would also comfort everyone with what PAN hopefully already knows: this need not be partisan. Many major health based organizations have offered, at the very least, core principles that need to be honored in any reform of America’s safety net.
PAN needs to get its head out of the Sinemet sand. Indeed, by sending the Parkinsons community to their representatives armed only with a pitch for research money, and no position on the major social issues confronting our community and country, PAN risks its credibility. PAN can and should do better, especially if it wants to truly be the “unified voice of the Parkinson’s community.”
For a more detailed account of the history, limitations and risks of PAN’s research-only (or at least research=dominated) agenda, see http://marksrubin.blogspot.com/2011/01/rethinking-parkinsons-advocacy.html
Please honor Mo Udall by pressing those doing Parkinsons advocacy to broaden their agenda. After all, Mo’s highest and broadest call in this arena was for “the care of the sick” not just “the cure.”
Mark Rubin
9/1/2001
5 Mark Rubin, J.D., developed the legal content on the National Parkinson Foundation’s website, after years of helping his mother and later himself and many others navigate legal issues confronted by people with Parkinson’s and their caregivers. The chair of NPF’s 5th Annual Young Onset Parkinson’s Network Conference, and a health care law attorney for most of his 25 years of law firm and then in-house legal practice, Mark has spoken frequently across the country on numerous health care law issues, including at programs focusing on Parkinson’s disease. After being diagnosed with Parkinson’s near the end of the Millennium, Mark continued his practice as Associate General Counsel, American Dental Association for about a decade longer, before retiring on disability at age 50, or what his nephew would call two cards short of a full deck.
Sunday, April 24, 2011
MANNA-FESTATION
PESACH PRACTICE 2011
This practice will open a door for you to experience the themes of Pesach, and to take from the experience whatever you may need. It is offered to be inspirational, especially for anyone who needs a booster shot or new direction for the coming year.
Lets settle in. Please close your eyes, check in. Listen to my questions, answer aloud, quietly if you wish. Keep on expanding your answer until I move on to the next question. (Do exercise in pairs if possible, one partner whispering the question again and again until the other answers, and again whenever there is a pause in the answer; then again switching roles with partner.)
1. who are you -- keep going til it all comes out. not just a list of your demographics, job and activities. you are more than public servant, healer, rabbi, activist, artist, mystic....mom or dad; oldest, middle or youngest child, etc. your bandwidth is wide and beautiful. who are you?
2. how did you get to be who you are?
a. what blessings came your way without asking?
b. what did you overcome to get here (and how)?
3. how did you feel about receiving those blessings? about overcoming those obstacles?
Now just be. Here. Now. Take in that feeling of gratitude. Know that it has helped bring you to where you are. And that it is a predicate for perfecting our own exodus. It takes us from 'freedom from' to more fully inhabiting 'freedom to.' Again and again. The practice of manna-festation.
4. the last question is: how will you use this annual and in every moment opportunity to engage the mystery? who will you choose to be. will you choose to be grateful for having this choice. and what will you choose to manna-fest. (please ponder tonight and when you get home.)
May we all be blessed to listen to our hearts and follow.
And be grateful for how we got here, however blessed or difficult that process may have been.
And grateful for the awareness that the journey begins with a next step.
May we live. Fully.
Each in his or her own way helping to connect heaven on earth
This practice will open a door for you to experience the themes of Pesach, and to take from the experience whatever you may need. It is offered to be inspirational, especially for anyone who needs a booster shot or new direction for the coming year.
Lets settle in. Please close your eyes, check in. Listen to my questions, answer aloud, quietly if you wish. Keep on expanding your answer until I move on to the next question. (Do exercise in pairs if possible, one partner whispering the question again and again until the other answers, and again whenever there is a pause in the answer; then again switching roles with partner.)
1. who are you -- keep going til it all comes out. not just a list of your demographics, job and activities. you are more than public servant, healer, rabbi, activist, artist, mystic....mom or dad; oldest, middle or youngest child, etc. your bandwidth is wide and beautiful. who are you?
2. how did you get to be who you are?
a. what blessings came your way without asking?
b. what did you overcome to get here (and how)?
3. how did you feel about receiving those blessings? about overcoming those obstacles?
Now just be. Here. Now. Take in that feeling of gratitude. Know that it has helped bring you to where you are. And that it is a predicate for perfecting our own exodus. It takes us from 'freedom from' to more fully inhabiting 'freedom to.' Again and again. The practice of manna-festation.
4. the last question is: how will you use this annual and in every moment opportunity to engage the mystery? who will you choose to be. will you choose to be grateful for having this choice. and what will you choose to manna-fest. (please ponder tonight and when you get home.)
May we all be blessed to listen to our hearts and follow.
And be grateful for how we got here, however blessed or difficult that process may have been.
And grateful for the awareness that the journey begins with a next step.
May we live. Fully.
Each in his or her own way helping to connect heaven on earth
Friday, February 11, 2011
ALL ONE chant
Here is the ALL ONE chant (aka SHLOMO, K.D. AND ME) that I sang at last night's Aquarian Minyan Bay Area Authors series, with awesome support and accompanyment by Rob Katz on the guitar, and an audience that fully engaged the opportunity to sing along. Picking up on the evening's theme that there are many types of love, and with new lyrics to Kris Kristofferson’s classic modern love song Me and Bobby McGee, this song is an ode to Shlomo Carlebach, Krishna Das and the transformational power of love through chant in Jewish Renewal, Kirtan and other mystical traditions. (I also presented 3 love poems http://marksrubin.blogspot.com/2011/02/love-poems.html)
The influence of Shlomo Carlebach, known as "The Singing Rabbi," continues to this day, with his many contributions to our liturgy and his beautiful nigunim. Krishna Das (born Jeffrey Kagel) is perhaps the foremost western-style singer of Indian devotional chants called kirtans. KD traveled to India in the 1960s where, along with Ram Das, he sat at the feet of Neem Karoli Baba (aka Maharaj-ji).
Shlomo and KD are, to me, emblematic of their traditions’ love of chant as a tool for connection and transformation. By helping us find a place of shared grounding and ecstasy, nigunim and kirtan each can contribute greatly to opening our hearts, a necessary -- perhaps even the first -- predicate for love.
One last bit of background. Skokie IL is a Chicago suburb that had more Holocaust survivors as residents than anyplace else in the country. In 1967, 10 years before it became the target of a famous neo Nazi march, Skokie became a sister city of Porbandar, India, Mahatma Gandhi's birthplace.
The same year also marked the early phase of Reb Shlomo’s House of Love and Prayer in San Francisco. KD was about to meet Ram Das and head off to the Himalayas. Kris Kristofferson was about to pen Me and Bobby McGee. And I was thrilled about having been the #1 10 year old pick in Skokie’s baseball little league draft, but aware that was not enough, something was missing. Only later did I learn about ecstasy and grounding, and how each can be rooted in and contribute to love.
The ALL ONE Chant (aka SHLOMO, K.D. AND ME)
An ode to Shlomo Carlebach, Krishna Das and the transformational power and love of chant in Jewish Renewal, Kirtan and other mystical traditions
(With apologies to Kris Kristofferson, sung to Me & Bobbie McGee)
Growing up in Skokie, heading for the shul,
Sensing that there must be something more
Shlomo and K.D. out there, waiting for their cue
To lift us high and help us really soar.
Needing to uncover, the treasure of sweet practice
Tasting many, not one (alone) feeling altogether true
With spirit pulsing (and) hearts open, letting Shlomo and KD fuse
We sang (the) holy “all one” – joyfully to You.
Freedoms just another word for more Renewal Jews,
And sacred ain’t sacred until it’s free,
Feelin good was easy, Lord, with Shlomo and K.D. fused,
And sister, that was good enough for me,
Good enough for Shlomo, K.D. and me.
From the temples of Chicago to the California sun,
Niggun and kirtan shared the secrets of my soul,
Standin right beside me through everythin I’ve done,
And every night they keep me from the cold.
I pray now that I’ve found them, Lord, I never let them slip away,
“All one” is greater than any love I ever dared hope to find,
I look forward to tomorrows, and let go of yesterday,
My spirit ever closer to You, divine.
Freedoms just another word for more Renewal Jews,
And sacred ain’t sacred until it’s free,
Feelin good was easy, Lord, with Shlomo and K.D. fused,
And sister, that was good enough for me,
Good enough for Shlomo, K.D. and me.
Om shanti, om shanti, om shanti shalom
My spirit ever closer to You, divine.
La da da da da da,
La da da da da,
My spirit ever closer to You, divine.
La da da da da da da da
La da da da da da da
My spirit ever closer to You, divine.
La da da da da da da da
La da da da da
da da da da da da
My spirit ever closer to You, divine.
I pray now that I’ve found them, Lord, I never let them slip away,
“All one” is greater than any love I ever dared hope to find,
I look forward to tomorrows, and let go of yesterday,
My spirit ever closer to You, divine.
Om shanti, om shanti, om shanti shalom
My spirit ever closer to You, divine.
© Mark Rubin 2009-11
The influence of Shlomo Carlebach, known as "The Singing Rabbi," continues to this day, with his many contributions to our liturgy and his beautiful nigunim. Krishna Das (born Jeffrey Kagel) is perhaps the foremost western-style singer of Indian devotional chants called kirtans. KD traveled to India in the 1960s where, along with Ram Das, he sat at the feet of Neem Karoli Baba (aka Maharaj-ji).
Shlomo and KD are, to me, emblematic of their traditions’ love of chant as a tool for connection and transformation. By helping us find a place of shared grounding and ecstasy, nigunim and kirtan each can contribute greatly to opening our hearts, a necessary -- perhaps even the first -- predicate for love.
One last bit of background. Skokie IL is a Chicago suburb that had more Holocaust survivors as residents than anyplace else in the country. In 1967, 10 years before it became the target of a famous neo Nazi march, Skokie became a sister city of Porbandar, India, Mahatma Gandhi's birthplace.
The same year also marked the early phase of Reb Shlomo’s House of Love and Prayer in San Francisco. KD was about to meet Ram Das and head off to the Himalayas. Kris Kristofferson was about to pen Me and Bobby McGee. And I was thrilled about having been the #1 10 year old pick in Skokie’s baseball little league draft, but aware that was not enough, something was missing. Only later did I learn about ecstasy and grounding, and how each can be rooted in and contribute to love.
The ALL ONE Chant (aka SHLOMO, K.D. AND ME)
An ode to Shlomo Carlebach, Krishna Das and the transformational power and love of chant in Jewish Renewal, Kirtan and other mystical traditions
(With apologies to Kris Kristofferson, sung to Me & Bobbie McGee)
Growing up in Skokie, heading for the shul,
Sensing that there must be something more
Shlomo and K.D. out there, waiting for their cue
To lift us high and help us really soar.
Needing to uncover, the treasure of sweet practice
Tasting many, not one (alone) feeling altogether true
With spirit pulsing (and) hearts open, letting Shlomo and KD fuse
We sang (the) holy “all one” – joyfully to You.
Freedoms just another word for more Renewal Jews,
And sacred ain’t sacred until it’s free,
Feelin good was easy, Lord, with Shlomo and K.D. fused,
And sister, that was good enough for me,
Good enough for Shlomo, K.D. and me.
From the temples of Chicago to the California sun,
Niggun and kirtan shared the secrets of my soul,
Standin right beside me through everythin I’ve done,
And every night they keep me from the cold.
I pray now that I’ve found them, Lord, I never let them slip away,
“All one” is greater than any love I ever dared hope to find,
I look forward to tomorrows, and let go of yesterday,
My spirit ever closer to You, divine.
Freedoms just another word for more Renewal Jews,
And sacred ain’t sacred until it’s free,
Feelin good was easy, Lord, with Shlomo and K.D. fused,
And sister, that was good enough for me,
Good enough for Shlomo, K.D. and me.
Om shanti, om shanti, om shanti shalom
My spirit ever closer to You, divine.
La da da da da da,
La da da da da,
My spirit ever closer to You, divine.
La da da da da da da da
La da da da da da da
My spirit ever closer to You, divine.
La da da da da da da da
La da da da da
da da da da da da
My spirit ever closer to You, divine.
I pray now that I’ve found them, Lord, I never let them slip away,
“All one” is greater than any love I ever dared hope to find,
I look forward to tomorrows, and let go of yesterday,
My spirit ever closer to You, divine.
Om shanti, om shanti, om shanti shalom
My spirit ever closer to You, divine.
© Mark Rubin 2009-11
Love poems
Here are three poems about love that I presented at the Aquarian Minyan's Bay Area Authors Series, by invitation at last night's pre Valentine's Day event. I also sang the All One song (http://marksrubin.blogspot.com/2011/02/all-one-chant.html).
THE MYSTERY OF THE KISS (A Response To The Zohar)
Heaven needs earth, as earth needs heaven.
Kiss me you fool!
Let your wise heart be not afraid.
Let us open and walk through the door of opportunity.
That sacred door.
Let us bless and be blessed By kissing into existence the marriage of heaven and earth.
LOVE IS
love is a simple thing
it only takes an opening
find out what makes you really sing
let your heart connect with glee...badabing!
now listen to your heart once more
it’s wisdom will tell you when (its time) to soar
love can be a simple thing
but first you need to wisely let it in
hiding is another game
maybe good for wealth or fame
but not being who you really are
will rarely get you very far
and what a shame for those who’d miss
the kisses of your lovely bliss
love can be a simple thing
but first you need to truly let it in
hidden not only from public view
you’d risk losing sight of the real you
stuck in neutral or low gear
perhaps avoiding your greatest fear
love leaves that far behind
finds who you are, lets hearts align
love is a simple thing
provided, lovers, that you let it in
but even when you think you’re aligned
with your lover(s) of whatever kind
meet them exactly wherever they are
and give them the love they need most by far
hoping that they’re ready to share
the love you need won’t get you there
doing so will only waste
a precious chance to inhabit the right place
free yourself to be as you are
a child of G-d, a shining star
and allow God’s will and abundant grace
to transport you to your own magical place
the place where you are sure to find
all the love you ever dared be thine
now let it live and flow through you
you are home now, be the love you always knew
love is a simple thing, once you fully let it in
THE TRIUMPH OF LOVE
Can you feel it, my love?
the pause after the movement.
the still point of awareness, of presence, of listening to one’s heart.
the sacred gift that allows us to open. and thus to receive. and to truly give.
all the while knowing we are safe, entitled and loved.
trusting in the triumph of love.
How i have longed for you, my love. do you long for me, as i do you?
dare we bare ourselves and explore this blessed opportunity?
do we dare to love? none of these are questions, not really.
we are here, now, together, our hearts’ desires primed to launch what shall unfold.
we need only to listen to our hearts, and follow.
This dish is best when served ripe, my love. and we are lush, our juices flowing. ready.
the opportunity, perhaps unexpected, thankfully reminds us we are not the gardener.
we are the lucky ones: recipients of invitations to play in the garden of love!
its time, my love, for the juiciest of RSVPs. time to embrace the lushness of life. time to love.
Breathe in, my love, then out, then pause before starting again.
again and again. over and over.
thank you for noticing you, first in the pause, then in the breath.
and for your awareness of me. and for being present with me now. namaste.
now breath with me, as we enjoy the mystery.
and begin the dance.
the ecstatic journey of co-creating the rhythm and flow of our love.
What an exquisite opportunity to engage, embrace and indulge our hearts’ desires.
without care, worry, or need for control.
how amazing to share this place of connection with self and all that is.
living from the heart based on a knowingness of what is real, true.
you. and me. loving what is, and each other.
the hope of the triumph of love.
THE MYSTERY OF THE KISS (A Response To The Zohar)
Heaven needs earth, as earth needs heaven.
Kiss me you fool!
Let your wise heart be not afraid.
Let us open and walk through the door of opportunity.
That sacred door.
Let us bless and be blessed By kissing into existence the marriage of heaven and earth.
LOVE IS
love is a simple thing
it only takes an opening
find out what makes you really sing
let your heart connect with glee...badabing!
now listen to your heart once more
it’s wisdom will tell you when (its time) to soar
love can be a simple thing
but first you need to wisely let it in
hiding is another game
maybe good for wealth or fame
but not being who you really are
will rarely get you very far
and what a shame for those who’d miss
the kisses of your lovely bliss
love can be a simple thing
but first you need to truly let it in
hidden not only from public view
you’d risk losing sight of the real you
stuck in neutral or low gear
perhaps avoiding your greatest fear
love leaves that far behind
finds who you are, lets hearts align
love is a simple thing
provided, lovers, that you let it in
but even when you think you’re aligned
with your lover(s) of whatever kind
meet them exactly wherever they are
and give them the love they need most by far
hoping that they’re ready to share
the love you need won’t get you there
doing so will only waste
a precious chance to inhabit the right place
free yourself to be as you are
a child of G-d, a shining star
and allow God’s will and abundant grace
to transport you to your own magical place
the place where you are sure to find
all the love you ever dared be thine
now let it live and flow through you
you are home now, be the love you always knew
love is a simple thing, once you fully let it in
THE TRIUMPH OF LOVE
Can you feel it, my love?
the pause after the movement.
the still point of awareness, of presence, of listening to one’s heart.
the sacred gift that allows us to open. and thus to receive. and to truly give.
all the while knowing we are safe, entitled and loved.
trusting in the triumph of love.
How i have longed for you, my love. do you long for me, as i do you?
dare we bare ourselves and explore this blessed opportunity?
do we dare to love? none of these are questions, not really.
we are here, now, together, our hearts’ desires primed to launch what shall unfold.
we need only to listen to our hearts, and follow.
This dish is best when served ripe, my love. and we are lush, our juices flowing. ready.
the opportunity, perhaps unexpected, thankfully reminds us we are not the gardener.
we are the lucky ones: recipients of invitations to play in the garden of love!
its time, my love, for the juiciest of RSVPs. time to embrace the lushness of life. time to love.
Breathe in, my love, then out, then pause before starting again.
again and again. over and over.
thank you for noticing you, first in the pause, then in the breath.
and for your awareness of me. and for being present with me now. namaste.
now breath with me, as we enjoy the mystery.
and begin the dance.
the ecstatic journey of co-creating the rhythm and flow of our love.
What an exquisite opportunity to engage, embrace and indulge our hearts’ desires.
without care, worry, or need for control.
how amazing to share this place of connection with self and all that is.
living from the heart based on a knowingness of what is real, true.
you. and me. loving what is, and each other.
the hope of the triumph of love.
Monday, January 10, 2011
Correct link for Parkinson's Advocacy think piece
Please visit the January 6, 2011 post at http://marksrubin.blogspot.com/2011/01/rethinking-parkinsons-advocacy.html
Thursday, January 6, 2011
RETHINKING PARKINSON'S ADVOCACY
(This 1/6/11 edition is the first version of this article intended for publication; earlier versions were drafts in process discovered online by those more tech savvy than I.)
RETHINKING PARKINSON'S ADVOCACY
This essay is offered as a heart-felt (some may say brash) critique of Parkinson’s advocacy at the national level. It is intended as a wake-up call about our current advocacy efforts; e.g. questioning whether our advocacy efforts suffer from common precursors to Parkinsion’s, such as loss of smell, constipation and depression. The goal in taking things head on is to open the Parkinson’s community to a rethinking of how we decide and describe our advocacy agenda. My sincere hope is that it leads to meaningful discussion about our approach to advocacy efforts with the intent of improving an already good thing.
Let me offer some context first before scrutinizing a sacred cow. The Parkinson’s Action Network (PAN) has done a yeoman’s job as “the unified voice of the Parkinson’s community advocating for a cure.” That is not in question here. And the ongoing efforts of building upon Joan Samuelson’s fantastic brainchild by Amy Comstock Rick and her team are cherished and most appreciated. A very heartfelt and huge “THANK YOU” to them all!
But has PAN’s excellent effort lobbying on scientific and research issues compromised the Parkinsons community’s needs for more comprehensive lobbying, especially on the daily concerns of those living with the disease and our care givers? From where I sit, having for many years assisted people with Parkinson's deal with social/legal issues in their daily lives, I think the answer can only be a resounding yes, to the real and potentially great detriment of most of us. I think, too, that by rethinking our approach to advocacy, we can find many ways to deal with this and other not insignificant concerns about how we advocate now, and consider some additional approaches that can be very simple and inexpensive to implement.
OPPORTUNITIES FOR ADVOCACY
It may well be that the Parkinson’s community would choose to spend virtually all of its advocacy dollars on finding a cure. But I question whether that would be an informed choice, especially now that PAN has established a strong presence and secured a meaningful place at the science/research funding table.
It may also be that our community is hesitant to address issues beyond science/research simply because we are not aware of the many significant advocacy opportunities on a wide array of life changing social/legal issues. There could be many reasons for this, including the possibility that those in charge, or who fund the charge, care primarily about scientific advances. There’s nothing wrong with that on the surface. But when the major advocacy groups do not even acknowledge or engage the important social/legal issues of our day, the ones that will go down is history as profoundly affecting our community, there is a problem. And the problem is magnified many times over when the “unified voice for advocacy” (PAN) creates or sustains the erroneous belief that it is Parkinson’s advocate for all issues, not just “for a cure.”
Let me offer but a few examples. In my professional lifetime, there have been at least three major national policy debates that bear upon the daily lives and futures of people with Parkinson’s; in addition to other ongoing policy considerations, some critical debates about entitlements loom large. Stunningly, from the best that I can tell, all but one of the national In the three major pieces of language discussed below, Parkinson’s organizations essentially sat idly by, not flagging the issues for our community (except one group on the third issue), let alone taking a side on the issues or shaping a call for any action.
First, the Americans with Disabilities Act (ADA), a watershed law creating a wide array of legal rights, and thus protecting may people with Parkinson’s and our caregivers against unlawful discrimination. Rather than support and help shape the bill to make sure it served our needs, the Parkinson’s organizations offered mostly no comment, or minimal comment on issues at the margin at best.
Second, a decade later, after the Supreme Court had essentially eviscerated the ADA, Congress passed the ADA Amendments Act, restoring the rights originally granted by the ADA, but perhaps not in the best way for people with Parkinson’s because we were again not at the table – no positions taken, seemingly no mention in the major organization’s journals, etc.
Third, Health Care Reform. Silencio, with one exception! Amazing! How could this be? We have PD and the organizations representing us back away from health care reform, one of the biggest public policy issues on the national agenda, with potentially significant implications for medical and long-term care for persons with illness?
PAN's excuse for shying away from the health care reform debate? Limited resources. "Across the country, Americans are currently debating the health insurance reform legislation being developed by Congress. While PAN is actively monitoring and tracking the issues that uniquely impact the lives of people living with Parkinson’s disease in the health insurance reform legislation, we have made the difficult decision, at this time, to not divert our limited resources away from advancing the Parkinson’s-specific legislation currently facing Congress."
I find that rationale incredulous and hugely disappointing. Every other disease-based organization that I saw – MS, Cancer, Heart, etc. – at least put forth some general principles about what should go into a good health care plan, whether red or blue, elephant or donkey. (See, e.g., Sclerosis Society's National Health Care Reform Principles ...
www.nationalmssociety.org/download.aspx?id=1288) Where was Parkinson’s? PAN could have easily put its good name on such a statement, or joined numerous like organizations in coalitions seeking reform.
It seems (at least from what I could find) that, in the Parkinson's community, only the Parkinson’s Disease Foundation stood up, publishing its Principles of Health Care Reform. (See, e.g., http://www.pdf.org/en/pd_comm_news/release/pr_1269377749). Thank goodness for that. But PDF’s forte is not advocacy. Indeed PDR says that its advocacy with the government is “primarily by providing significant financial and other support to the Parkinson’s Action Network (PAN).” Why did PDF engage the health care debate when PAN did not? Why didn’t PAN and the other national agencies join in once PDF made it so easy to do so. Did the failure of the other Parkinson's groups to band together around the PDF’s principles undermine a meaningful lobbying effort? If so, was that intentional?
(For those interested in PDF’s position, it begins like this:
In order to meet the health care needs of people who live with Parkinson's disease and their families, the Parkinson's Disease Foundation takes the position that an acceptable national plan for health care reform should meet the following criteria:
1. Assuring accessible and affordable coverage for all essential health services, recognizing the special needs of people who live with long-term neurodegenerative conditions such as Parkinson’s disease…
Hopefully that snippet will make you want to read more, and to wonder why the other Parkinson’s organizations did not ask to sign on to the document.)
Adding to the mix is that the PAN and most of the other PD lobby stayed essentially silent even though it had an internal knowing of what it could and arguably should or have been doing. A good example is that at least some of the national PD organizations sent e-mail blasts excitedly titled "Neurology left out of health care reform!" Sadly, this turned out not to be a call for action about patient care or benefits, but a pass along from a national association of neurologists complaining about their ineligibility for an incentive bonus, which they argued would impair patient care. A more accurate subject line would have been "Neurologists left out of health care reform." If Parkinson's wanted to be "in" health care reform, our organizations could have offered a "general principles" statement at the very least, like so many other organizations did. Stunningly, they did nothing, or at least not anything visible or memorable that I could find. (And on what logical basis could they push the neurologists’ position, especially when they were avoiding the main debate?)
To top it off, after sitting idly by through the core of the health care debate, PAN proudly gushed after the passage of heath care reform, not surprisingly through its research heavy glasses. Its press release cast the passage as "historic" but seemingly only in connection with enactment of the Cures Acceleration Network (CAN) in Health Reform. Core items such as rights to medical care seemed taboo for PAN once again. A law affecting our rights to healthcare, apparently not mattering for better or worse, since our research agenda was supposedly met (more on that below).
Fourth and beyond. There are always ongoing battles to be fought in the arena of social/legal policy advocacy. Another of recent vintage: revisions of Social Security’s “return to work” rules. Two more that will continue to loom large: the future of Social Security and Medicare/Medicaid. These are just a few of the real world issues that people with Parkinson’s need to have advocacy on – but aren’t likely to get if history is a guide.
ADVOCACY: THE BIG PICTURE
The Parkinsons community's approach to advocacy, especially as something funneled through PAN as the "unified voice," is at this point in time arguably both outdated and problematic. PAN has established itself as a player on the science/research front. We now need to demonstrate interest and gain footing on the social/political side of things. To focus on science/research without consideration of the social/legal aspects of legislation, or even worse, putting aside the social/legal aspects as if they are not relevant to our community, strikes me as reflecting a remarkably myopic and scary world view. A view that either doesn't understand, or doesn't care, or is afraid or unequipped to engage the potentially profound implications of social/legal legislation to our community. A view that could lead to the promotion of scientific advances to the detriment of social/legal rights. A view that is not representative of a "unified" position on anything except lobbying for a cure. A view with a good cause, but by no means fully representative of me, or of most people with PD who have asked me for help over the years.
When social/legal policy issues are not on the Parkinsons community’s advocacy agenda, let alone central to it, our rights and futures are at risk. Moreover, the failure to deal in real world concerns arguably undermines our advocacy efforts for a cure. When the entire country is focused on health care reform, and we go knocking on our legislators’ doors as if unaware that health care is even an issue, or that we know about it but don’t care, we risk looking odd and even foolish. I know my representative would have asked me what me for an opinion on health care. I’m told that PAN did not arm people pitching for research dollars with much, if anything, with which to answer such questions, except to say that health care was a huge issue and that we were monitoring it (more on that below).
GETTING OUR ADVOCACY DUCKS QUACKING IN HARMONY
Clarifying PAN’s role and shedding light on how it functions might address many of these concerns. PAN seems to occasionally dabble beyond its defined “for a cure” role. How does it pick and choose when to do so; e.g., I’m thrilled that there was advocacy for health care for veterans with PD, but what are the rest of us, chopped liver? Who is making those decisions and do they have the training and experience to effectively do so? Is there a big picture agenda of possible forays into social/legal areas from which they are selected? Is PAN adequately staffed or funded to properly undertake select forays into isolated beyond “for a cure” advocacy; e.g. in discrete issues concerning SSDI and Medicare? Why does there seem to be reluctance to collaborating with non-Parkinson organizations on policy concerns of mutual interest, as seems to be the case with all the issues noted above? Does PAN intend to portray itself as advocating more broadly? Should it be more circumspect about how it portrays the scope of its mission?
Answers to such questions are important not only to maximize the impact of Parkinson’s advocacy, but also to avoid having a growing number of people feel – though we don’t want to – that the Parkinson’s groups are out of touch. Many of the Parkinson’s advocacy communications that reach my desk strike daggers with their uncritical acceptance of the status quo. And they way to often compound the problem by using a communications style seemingly premised on an expectation that we will not see through to what is real. For example, I’m sad that victory is proudly claimed on side issues being included into important bills, especially when the meat of the measure is avoided like the plague. I could cry when I read analysis of legislation that is inaccurate, misses the point and/or doesn’t seem to have a clue about the person with PD’s perspective, e.g., the impact of the health care legislation that passed. And I can only laugh out loud when seeing emails claiming victories either not of our doing or not yet fully achieved. Much greater care should be taken to avoid such concerns from arising and festering.
A CLOSER LOOK AT ONE EXAMPLE (OF MANY)
A quick look at look at PAN’s just released 2010 “Parkinson's Legislative Issues: The Year in Review” provides a telling example. It begins as follows:
“Parkinson's community,
There’s no doubt that 2010 was a challenging political year in Washington. Even so, we managed very well on Parkinson’s issues and ended the year with many successes because of you. PAN would like to thank you for your tireless advocacy throughout 2010, and we look forward to working with you on our issues in the coming year. Below is an overview of our key legislative priorities, and how we fared this year.”
But what really happened on PAN’s three key priorities? Using PAN’s subject headings, a plain English version of their report might read something like this:
1. Funding for Parkinson’s Priorities: Funding temporarily continued; cuts possible; desired new program unlikely.
2. National Neurological Diseases Surveillance System Act: We lost. (Not “We came so far!”)
3. Access to Medicare Therapy Services: A temporary win on a non-research initiative. No explanation of silence on every other possible such issues.
A careful reader of PAN’s Year in Review must certainly wonder how the year could be cast as “managed very well” and a year ending with “many successes.” The science issues were losers -- one at best a temporary stalemate. The non-science issue resulted in a temporary prevention of an existing social/legal benefit -- a not unimportant one. But who made this, of all issues, the one non-science based issues to tackle, while leaving significantly more critical ones off the agenda for political or other reasons? Moreover, if this Medicare item was fair game for PAN to tackle, as PAN had on a few other Medicare issues previously, on what logical basis could PAN ignore numerous other more far reaching Medicare issues? This of course, begs the question again of PAN’s lack of any visible position or action on health care reform. And even more, the future. Will the "unified voice" have nothing to say about big, expected, national discussions on health care and entitlements?
ANOTHER APPROACH TO LIFE AND TO LOBBYING
Rabbi Hillel is credited with asking “If I am not for myself, who is for me? And if I am only for myself, what am I? If not now, when?” The wisdom in that quotation applies not just to how we live our lives, but to lobbying as well. If the Parkinson’s community does not speak its piece about significant issues like Health Care Reform, or perhaps soon about entitlement program reform to mainstays like Medicare, Medicaid and Social Security, we will be hard pressed to rely on others to speak on our behalf. If we bury our heads in the sands because issues are too big, dynamic or purportedly too expansive to comment on, we deserve whatever comes our way – whether its elimination of Social Security income, the inability to secure healthcare or supplemental Medicare policies, perhaps even the loss of public funding for long term (nursing home) care, and other benefits that we now take for granted. And if we are only for ourselves, who are we? Will government agencies take us seriously except as a money grubbing lobby looking for a cure. If we are not good neighbors and citizens, will we lose valuable opportunities for alliances with others with whom we share research and broader human rights issues? And in so doing, will we be shooting our science/research quest in the foot?
The time is now, people, while we feel forces of change softly shifting the ground under our feet. And there may be some simple and inexpensive ways to get started. If somebody tells you no, its not right, or no, its not feasible, don’t blindly follow their lead. Examine the basis for their conclusions. Might there be more reasons than the stated ones? Could it have to do with the backgrounds, expertise or interests (and blackspots) of the people giving the advice? Even if they have the best of intentions, are they able to fully grasp the situation, needs and opportunities? And think critically about what other factors might lead to their recommendations. Could it have something to do with Rabbi J. Carville’s important consideration: is it something about the money? If so, let’s not be stupid.
After 25 years of law practice, more than half as in-house counsel, one thing I know is this: one of the easiest ways for leadership to impose an agenda on an organization is not to do so proactively, but to do so in a quiet way by being dismissive of potential products, services and activities. I am not close enough to the issues to have a clear understanding the approach taken on health care by PAN, but I do know what the Bard was right: question authority.
WHAT MIGHT WE SPECIFICALLY NEED?
We need, at the very least, to take a hard and thorough look at our current condition. The above analysis, an attempt to begin such an assessment, points to three precursor warning symptoms needing some relief, and identifies a number of core questions deserving attention. Addressing these issues, and others that may surface in this process, is an important piece in assessing, and perhaps rethinking, our approach to Parkinson's advocacy. It could lead to a more comprehensive and transparent approach to advocacy, to the significant betterment of our lives.
Precursor Warning Symptoms: Do Our Advocacy Efforts Need Relief From Loss of Smell, Constipation and/or Depression? Needing Relief?
First, is there something stinky about our current focus only on a cure, and does the smell get even more foul when other issues are not surfaced or are devalued, potentially leading the community to believe that there’s nothing else worth collectively fighting for (or that it’s being separately handled), when in fact there are numerous life changing issues in play, many of which could be easily and inexpensively addressed? If so, why do we have trouble smelling it?
Second, are we stuck in a research-only rut, unable to think outside the box and move fluidly to protect and advance our rights and overall interests? Is the community sometimes constipated to the point of being unable to even envision and act upon some simple ways to participate in important public debates, or that they can be acted upon only by an organization whose primary advocacy experience has been in funding advocacy efforts? How do we spell relief?
Third, how daunting must our narrow spaces be, that we do not band together to advocate at every opportunity to readily effect social/legal policy issues? We hear every day in the news about legal and other issues that affect our rights. How depressed must we be to live with a collective denial about both the issues and our capacity to shape them, especially given the ease of joining coalitions with groups sharing similar interests?
Select Core Questions Deserving Attention:
1. What are our advocacy priorities?
2. How are they set, and by whom?
3. How do we reconcile PAN’s designation as the Parkinsons community's "unified voice for advocacy" with its mission/focus on finding a cure?
4. Are PAN's legislative priorities the same as those of the Parkinson's community, or a skewed, primarily research oriented subset?
5. Is PAN interested and able, if adequately staffed and funded, to develop and advance a comprehensive and coordinated advocacy agenda, including both science/research and social/legal priorities?
6. If not, how do we get our social/legal advocacy needs met?
7. Should we prioritize signing on to coalitions, particularly as a cost effective way of engaging in social/legal issues?
8. Why can't the national Parkinson's organizations get along better than they seemingly do, or at least divide up work for the good of the community, so we don't have one saying a major issue is too complicated or costly to handle, and another handling it at least at some level, e.g. by adopting principles?
9. Who is minding our big-picture advocacy store? Who should be?
10. Are we sold out? (And to quietly name the 500 pound pink elephant in the room, might this discord have something to do with the fact that the advocacy agenda is funded substantially by the pharma companies who develop drugs?)
And of course for all of these substantive, core issues, what process steps can we take to make sure they are fully serviced, meaningfully explored, and appropriately advanced for the good of the Parkinson’s community?
CLOSING CONSIDERATIONS
Let me close with a few targeted questions, first for folks with PD and our caregivers and other loved ones. In addition to promoting research for a cure, are there other public policy issues of interest to you? For example, do you want to know how to maximize your existing rights, and also to protect and even expand them? Have you presumed that the national Parkinson’s agencies have been looking out for you in these arenas all along? Would it disappoint you know they have for the most part dropped the ball on social/legal policy issues? Would you like to see them add those issues to their future agendas? If so, what priority would you like them to attach to advocacy beyond finding a cure? Are you willing to insist that they keep abreast of the relevant issues and opportunities, push hard for changes to protect and promote your legal rights, and help to arm you with ammunition to use in calling upon your elective representatives to take action? If they fail to do so, are you prepared to get help elsewhere, e.g. in collaboration with the American Association of People with Disabilities (the largest national nonprofit cross-disability membership organization in the United States, at the forefront of disability advocacy for many years)?
I offer these questions in the hope of engaging serious dialogue about advocacy that is meaningful for our daily lives now, and into the future. We need to know whether PAN, notwithstanding the excellence it brings to the advocacy for a cure, is or can be funded or structured to do more than that. It’s our job to clean the air, get moving, and take action hoping, and knowing, that there is much more that we can tackle in our advocacy endeavors.
And finally, a question for the national Parkinson’s organizations, perhaps especially the PAN Board: would you entertain a meeting to discuss the issues? There are a handful of people who have been championing them at the national level for a number of years now. We would welcome an opportunity to dialogue with you.
For the good of the order, knowing I am risking whatever credibility I may have accrued having served the Parkinson’s community for a number of years, and hoping that it leads to discussion that we seem to so direly need,
Mark Rubin
Mark Rubin, J.D., developed the legal content on the National Parkinson Foundation’s recently launched website, after years of helping his mother and later himself and many others navigate legal issues confronted by people with Parkinson’s and their caregivers. The chair of NPF’s 5th Annual Young Onset Parkinson’s Network Conference, and a health care law attorney for most of his 25 years of law firm and then in-house legal practice, Mark has spoken frequently across the country on numerous health care law issues, including at programs focusing on Parkinson’s disease. After being diagnosed with Parkinson’s near the end of the Millennium, Mark continued his practice as Associate General Counsel, American Dental Association for about a decade longer, before retiring on disability at age 50, or what his nephew would call two cards short of a full deck.
RETHINKING PARKINSON'S ADVOCACY
This essay is offered as a heart-felt (some may say brash) critique of Parkinson’s advocacy at the national level. It is intended as a wake-up call about our current advocacy efforts; e.g. questioning whether our advocacy efforts suffer from common precursors to Parkinsion’s, such as loss of smell, constipation and depression. The goal in taking things head on is to open the Parkinson’s community to a rethinking of how we decide and describe our advocacy agenda. My sincere hope is that it leads to meaningful discussion about our approach to advocacy efforts with the intent of improving an already good thing.
Let me offer some context first before scrutinizing a sacred cow. The Parkinson’s Action Network (PAN) has done a yeoman’s job as “the unified voice of the Parkinson’s community advocating for a cure.” That is not in question here. And the ongoing efforts of building upon Joan Samuelson’s fantastic brainchild by Amy Comstock Rick and her team are cherished and most appreciated. A very heartfelt and huge “THANK YOU” to them all!
But has PAN’s excellent effort lobbying on scientific and research issues compromised the Parkinsons community’s needs for more comprehensive lobbying, especially on the daily concerns of those living with the disease and our care givers? From where I sit, having for many years assisted people with Parkinson's deal with social/legal issues in their daily lives, I think the answer can only be a resounding yes, to the real and potentially great detriment of most of us. I think, too, that by rethinking our approach to advocacy, we can find many ways to deal with this and other not insignificant concerns about how we advocate now, and consider some additional approaches that can be very simple and inexpensive to implement.
OPPORTUNITIES FOR ADVOCACY
It may well be that the Parkinson’s community would choose to spend virtually all of its advocacy dollars on finding a cure. But I question whether that would be an informed choice, especially now that PAN has established a strong presence and secured a meaningful place at the science/research funding table.
It may also be that our community is hesitant to address issues beyond science/research simply because we are not aware of the many significant advocacy opportunities on a wide array of life changing social/legal issues. There could be many reasons for this, including the possibility that those in charge, or who fund the charge, care primarily about scientific advances. There’s nothing wrong with that on the surface. But when the major advocacy groups do not even acknowledge or engage the important social/legal issues of our day, the ones that will go down is history as profoundly affecting our community, there is a problem. And the problem is magnified many times over when the “unified voice for advocacy” (PAN) creates or sustains the erroneous belief that it is Parkinson’s advocate for all issues, not just “for a cure.”
Let me offer but a few examples. In my professional lifetime, there have been at least three major national policy debates that bear upon the daily lives and futures of people with Parkinson’s; in addition to other ongoing policy considerations, some critical debates about entitlements loom large. Stunningly, from the best that I can tell, all but one of the national In the three major pieces of language discussed below, Parkinson’s organizations essentially sat idly by, not flagging the issues for our community (except one group on the third issue), let alone taking a side on the issues or shaping a call for any action.
First, the Americans with Disabilities Act (ADA), a watershed law creating a wide array of legal rights, and thus protecting may people with Parkinson’s and our caregivers against unlawful discrimination. Rather than support and help shape the bill to make sure it served our needs, the Parkinson’s organizations offered mostly no comment, or minimal comment on issues at the margin at best.
Second, a decade later, after the Supreme Court had essentially eviscerated the ADA, Congress passed the ADA Amendments Act, restoring the rights originally granted by the ADA, but perhaps not in the best way for people with Parkinson’s because we were again not at the table – no positions taken, seemingly no mention in the major organization’s journals, etc.
Third, Health Care Reform. Silencio, with one exception! Amazing! How could this be? We have PD and the organizations representing us back away from health care reform, one of the biggest public policy issues on the national agenda, with potentially significant implications for medical and long-term care for persons with illness?
PAN's excuse for shying away from the health care reform debate? Limited resources. "Across the country, Americans are currently debating the health insurance reform legislation being developed by Congress. While PAN is actively monitoring and tracking the issues that uniquely impact the lives of people living with Parkinson’s disease in the health insurance reform legislation, we have made the difficult decision, at this time, to not divert our limited resources away from advancing the Parkinson’s-specific legislation currently facing Congress."
I find that rationale incredulous and hugely disappointing. Every other disease-based organization that I saw – MS, Cancer, Heart, etc. – at least put forth some general principles about what should go into a good health care plan, whether red or blue, elephant or donkey. (See, e.g., Sclerosis Society's National Health Care Reform Principles ...
www.nationalmssociety.org/download.aspx?id=1288) Where was Parkinson’s? PAN could have easily put its good name on such a statement, or joined numerous like organizations in coalitions seeking reform.
It seems (at least from what I could find) that, in the Parkinson's community, only the Parkinson’s Disease Foundation stood up, publishing its Principles of Health Care Reform. (See, e.g., http://www.pdf.org/en/pd_comm_news/release/pr_1269377749). Thank goodness for that. But PDF’s forte is not advocacy. Indeed PDR says that its advocacy with the government is “primarily by providing significant financial and other support to the Parkinson’s Action Network (PAN).” Why did PDF engage the health care debate when PAN did not? Why didn’t PAN and the other national agencies join in once PDF made it so easy to do so. Did the failure of the other Parkinson's groups to band together around the PDF’s principles undermine a meaningful lobbying effort? If so, was that intentional?
(For those interested in PDF’s position, it begins like this:
In order to meet the health care needs of people who live with Parkinson's disease and their families, the Parkinson's Disease Foundation takes the position that an acceptable national plan for health care reform should meet the following criteria:
1. Assuring accessible and affordable coverage for all essential health services, recognizing the special needs of people who live with long-term neurodegenerative conditions such as Parkinson’s disease…
Hopefully that snippet will make you want to read more, and to wonder why the other Parkinson’s organizations did not ask to sign on to the document.)
Adding to the mix is that the PAN and most of the other PD lobby stayed essentially silent even though it had an internal knowing of what it could and arguably should or have been doing. A good example is that at least some of the national PD organizations sent e-mail blasts excitedly titled "Neurology left out of health care reform!" Sadly, this turned out not to be a call for action about patient care or benefits, but a pass along from a national association of neurologists complaining about their ineligibility for an incentive bonus, which they argued would impair patient care. A more accurate subject line would have been "Neurologists left out of health care reform." If Parkinson's wanted to be "in" health care reform, our organizations could have offered a "general principles" statement at the very least, like so many other organizations did. Stunningly, they did nothing, or at least not anything visible or memorable that I could find. (And on what logical basis could they push the neurologists’ position, especially when they were avoiding the main debate?)
To top it off, after sitting idly by through the core of the health care debate, PAN proudly gushed after the passage of heath care reform, not surprisingly through its research heavy glasses. Its press release cast the passage as "historic" but seemingly only in connection with enactment of the Cures Acceleration Network (CAN) in Health Reform. Core items such as rights to medical care seemed taboo for PAN once again. A law affecting our rights to healthcare, apparently not mattering for better or worse, since our research agenda was supposedly met (more on that below).
Fourth and beyond. There are always ongoing battles to be fought in the arena of social/legal policy advocacy. Another of recent vintage: revisions of Social Security’s “return to work” rules. Two more that will continue to loom large: the future of Social Security and Medicare/Medicaid. These are just a few of the real world issues that people with Parkinson’s need to have advocacy on – but aren’t likely to get if history is a guide.
ADVOCACY: THE BIG PICTURE
The Parkinsons community's approach to advocacy, especially as something funneled through PAN as the "unified voice," is at this point in time arguably both outdated and problematic. PAN has established itself as a player on the science/research front. We now need to demonstrate interest and gain footing on the social/political side of things. To focus on science/research without consideration of the social/legal aspects of legislation, or even worse, putting aside the social/legal aspects as if they are not relevant to our community, strikes me as reflecting a remarkably myopic and scary world view. A view that either doesn't understand, or doesn't care, or is afraid or unequipped to engage the potentially profound implications of social/legal legislation to our community. A view that could lead to the promotion of scientific advances to the detriment of social/legal rights. A view that is not representative of a "unified" position on anything except lobbying for a cure. A view with a good cause, but by no means fully representative of me, or of most people with PD who have asked me for help over the years.
When social/legal policy issues are not on the Parkinsons community’s advocacy agenda, let alone central to it, our rights and futures are at risk. Moreover, the failure to deal in real world concerns arguably undermines our advocacy efforts for a cure. When the entire country is focused on health care reform, and we go knocking on our legislators’ doors as if unaware that health care is even an issue, or that we know about it but don’t care, we risk looking odd and even foolish. I know my representative would have asked me what me for an opinion on health care. I’m told that PAN did not arm people pitching for research dollars with much, if anything, with which to answer such questions, except to say that health care was a huge issue and that we were monitoring it (more on that below).
GETTING OUR ADVOCACY DUCKS QUACKING IN HARMONY
Clarifying PAN’s role and shedding light on how it functions might address many of these concerns. PAN seems to occasionally dabble beyond its defined “for a cure” role. How does it pick and choose when to do so; e.g., I’m thrilled that there was advocacy for health care for veterans with PD, but what are the rest of us, chopped liver? Who is making those decisions and do they have the training and experience to effectively do so? Is there a big picture agenda of possible forays into social/legal areas from which they are selected? Is PAN adequately staffed or funded to properly undertake select forays into isolated beyond “for a cure” advocacy; e.g. in discrete issues concerning SSDI and Medicare? Why does there seem to be reluctance to collaborating with non-Parkinson organizations on policy concerns of mutual interest, as seems to be the case with all the issues noted above? Does PAN intend to portray itself as advocating more broadly? Should it be more circumspect about how it portrays the scope of its mission?
Answers to such questions are important not only to maximize the impact of Parkinson’s advocacy, but also to avoid having a growing number of people feel – though we don’t want to – that the Parkinson’s groups are out of touch. Many of the Parkinson’s advocacy communications that reach my desk strike daggers with their uncritical acceptance of the status quo. And they way to often compound the problem by using a communications style seemingly premised on an expectation that we will not see through to what is real. For example, I’m sad that victory is proudly claimed on side issues being included into important bills, especially when the meat of the measure is avoided like the plague. I could cry when I read analysis of legislation that is inaccurate, misses the point and/or doesn’t seem to have a clue about the person with PD’s perspective, e.g., the impact of the health care legislation that passed. And I can only laugh out loud when seeing emails claiming victories either not of our doing or not yet fully achieved. Much greater care should be taken to avoid such concerns from arising and festering.
A CLOSER LOOK AT ONE EXAMPLE (OF MANY)
A quick look at look at PAN’s just released 2010 “Parkinson's Legislative Issues: The Year in Review” provides a telling example. It begins as follows:
“Parkinson's community,
There’s no doubt that 2010 was a challenging political year in Washington. Even so, we managed very well on Parkinson’s issues and ended the year with many successes because of you. PAN would like to thank you for your tireless advocacy throughout 2010, and we look forward to working with you on our issues in the coming year. Below is an overview of our key legislative priorities, and how we fared this year.”
But what really happened on PAN’s three key priorities? Using PAN’s subject headings, a plain English version of their report might read something like this:
1. Funding for Parkinson’s Priorities: Funding temporarily continued; cuts possible; desired new program unlikely.
2. National Neurological Diseases Surveillance System Act: We lost. (Not “We came so far!”)
3. Access to Medicare Therapy Services: A temporary win on a non-research initiative. No explanation of silence on every other possible such issues.
A careful reader of PAN’s Year in Review must certainly wonder how the year could be cast as “managed very well” and a year ending with “many successes.” The science issues were losers -- one at best a temporary stalemate. The non-science issue resulted in a temporary prevention of an existing social/legal benefit -- a not unimportant one. But who made this, of all issues, the one non-science based issues to tackle, while leaving significantly more critical ones off the agenda for political or other reasons? Moreover, if this Medicare item was fair game for PAN to tackle, as PAN had on a few other Medicare issues previously, on what logical basis could PAN ignore numerous other more far reaching Medicare issues? This of course, begs the question again of PAN’s lack of any visible position or action on health care reform. And even more, the future. Will the "unified voice" have nothing to say about big, expected, national discussions on health care and entitlements?
ANOTHER APPROACH TO LIFE AND TO LOBBYING
Rabbi Hillel is credited with asking “If I am not for myself, who is for me? And if I am only for myself, what am I? If not now, when?” The wisdom in that quotation applies not just to how we live our lives, but to lobbying as well. If the Parkinson’s community does not speak its piece about significant issues like Health Care Reform, or perhaps soon about entitlement program reform to mainstays like Medicare, Medicaid and Social Security, we will be hard pressed to rely on others to speak on our behalf. If we bury our heads in the sands because issues are too big, dynamic or purportedly too expansive to comment on, we deserve whatever comes our way – whether its elimination of Social Security income, the inability to secure healthcare or supplemental Medicare policies, perhaps even the loss of public funding for long term (nursing home) care, and other benefits that we now take for granted. And if we are only for ourselves, who are we? Will government agencies take us seriously except as a money grubbing lobby looking for a cure. If we are not good neighbors and citizens, will we lose valuable opportunities for alliances with others with whom we share research and broader human rights issues? And in so doing, will we be shooting our science/research quest in the foot?
The time is now, people, while we feel forces of change softly shifting the ground under our feet. And there may be some simple and inexpensive ways to get started. If somebody tells you no, its not right, or no, its not feasible, don’t blindly follow their lead. Examine the basis for their conclusions. Might there be more reasons than the stated ones? Could it have to do with the backgrounds, expertise or interests (and blackspots) of the people giving the advice? Even if they have the best of intentions, are they able to fully grasp the situation, needs and opportunities? And think critically about what other factors might lead to their recommendations. Could it have something to do with Rabbi J. Carville’s important consideration: is it something about the money? If so, let’s not be stupid.
After 25 years of law practice, more than half as in-house counsel, one thing I know is this: one of the easiest ways for leadership to impose an agenda on an organization is not to do so proactively, but to do so in a quiet way by being dismissive of potential products, services and activities. I am not close enough to the issues to have a clear understanding the approach taken on health care by PAN, but I do know what the Bard was right: question authority.
WHAT MIGHT WE SPECIFICALLY NEED?
We need, at the very least, to take a hard and thorough look at our current condition. The above analysis, an attempt to begin such an assessment, points to three precursor warning symptoms needing some relief, and identifies a number of core questions deserving attention. Addressing these issues, and others that may surface in this process, is an important piece in assessing, and perhaps rethinking, our approach to Parkinson's advocacy. It could lead to a more comprehensive and transparent approach to advocacy, to the significant betterment of our lives.
Precursor Warning Symptoms: Do Our Advocacy Efforts Need Relief From Loss of Smell, Constipation and/or Depression? Needing Relief?
First, is there something stinky about our current focus only on a cure, and does the smell get even more foul when other issues are not surfaced or are devalued, potentially leading the community to believe that there’s nothing else worth collectively fighting for (or that it’s being separately handled), when in fact there are numerous life changing issues in play, many of which could be easily and inexpensively addressed? If so, why do we have trouble smelling it?
Second, are we stuck in a research-only rut, unable to think outside the box and move fluidly to protect and advance our rights and overall interests? Is the community sometimes constipated to the point of being unable to even envision and act upon some simple ways to participate in important public debates, or that they can be acted upon only by an organization whose primary advocacy experience has been in funding advocacy efforts? How do we spell relief?
Third, how daunting must our narrow spaces be, that we do not band together to advocate at every opportunity to readily effect social/legal policy issues? We hear every day in the news about legal and other issues that affect our rights. How depressed must we be to live with a collective denial about both the issues and our capacity to shape them, especially given the ease of joining coalitions with groups sharing similar interests?
Select Core Questions Deserving Attention:
1. What are our advocacy priorities?
2. How are they set, and by whom?
3. How do we reconcile PAN’s designation as the Parkinsons community's "unified voice for advocacy" with its mission/focus on finding a cure?
4. Are PAN's legislative priorities the same as those of the Parkinson's community, or a skewed, primarily research oriented subset?
5. Is PAN interested and able, if adequately staffed and funded, to develop and advance a comprehensive and coordinated advocacy agenda, including both science/research and social/legal priorities?
6. If not, how do we get our social/legal advocacy needs met?
7. Should we prioritize signing on to coalitions, particularly as a cost effective way of engaging in social/legal issues?
8. Why can't the national Parkinson's organizations get along better than they seemingly do, or at least divide up work for the good of the community, so we don't have one saying a major issue is too complicated or costly to handle, and another handling it at least at some level, e.g. by adopting principles?
9. Who is minding our big-picture advocacy store? Who should be?
10. Are we sold out? (And to quietly name the 500 pound pink elephant in the room, might this discord have something to do with the fact that the advocacy agenda is funded substantially by the pharma companies who develop drugs?)
And of course for all of these substantive, core issues, what process steps can we take to make sure they are fully serviced, meaningfully explored, and appropriately advanced for the good of the Parkinson’s community?
CLOSING CONSIDERATIONS
Let me close with a few targeted questions, first for folks with PD and our caregivers and other loved ones. In addition to promoting research for a cure, are there other public policy issues of interest to you? For example, do you want to know how to maximize your existing rights, and also to protect and even expand them? Have you presumed that the national Parkinson’s agencies have been looking out for you in these arenas all along? Would it disappoint you know they have for the most part dropped the ball on social/legal policy issues? Would you like to see them add those issues to their future agendas? If so, what priority would you like them to attach to advocacy beyond finding a cure? Are you willing to insist that they keep abreast of the relevant issues and opportunities, push hard for changes to protect and promote your legal rights, and help to arm you with ammunition to use in calling upon your elective representatives to take action? If they fail to do so, are you prepared to get help elsewhere, e.g. in collaboration with the American Association of People with Disabilities (the largest national nonprofit cross-disability membership organization in the United States, at the forefront of disability advocacy for many years)?
I offer these questions in the hope of engaging serious dialogue about advocacy that is meaningful for our daily lives now, and into the future. We need to know whether PAN, notwithstanding the excellence it brings to the advocacy for a cure, is or can be funded or structured to do more than that. It’s our job to clean the air, get moving, and take action hoping, and knowing, that there is much more that we can tackle in our advocacy endeavors.
And finally, a question for the national Parkinson’s organizations, perhaps especially the PAN Board: would you entertain a meeting to discuss the issues? There are a handful of people who have been championing them at the national level for a number of years now. We would welcome an opportunity to dialogue with you.
For the good of the order, knowing I am risking whatever credibility I may have accrued having served the Parkinson’s community for a number of years, and hoping that it leads to discussion that we seem to so direly need,
Mark Rubin
Mark Rubin, J.D., developed the legal content on the National Parkinson Foundation’s recently launched website, after years of helping his mother and later himself and many others navigate legal issues confronted by people with Parkinson’s and their caregivers. The chair of NPF’s 5th Annual Young Onset Parkinson’s Network Conference, and a health care law attorney for most of his 25 years of law firm and then in-house legal practice, Mark has spoken frequently across the country on numerous health care law issues, including at programs focusing on Parkinson’s disease. After being diagnosed with Parkinson’s near the end of the Millennium, Mark continued his practice as Associate General Counsel, American Dental Association for about a decade longer, before retiring on disability at age 50, or what his nephew would call two cards short of a full deck.
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