Thursday, June 04, 2009

The meaning of Marty

As many more people than are ever likely to read this blog now know, Marty Omoto today announced the suspension of his advocacy work through the California Disability Community Action Network.  As everyone I'm aware reads this blog knows, Marty and I are both friends and colleagues and I admit to both a bias and an interest in his welfare.  So, like Mark Antony over the body of Caesar, I want to publicly share some thoughts about the systemic importance of Marty's work while maintaining the friendship privately.  Friends, Californians, countrymen, I come to contextualize Marty, not to praise him.

Going back to the days when he was with UCP, Marty is best known for his reports and townhall meetings.  Leaving aside other accomplishments, Marty's work has revolutionized advocacy in the narrowest sense of that word, preparing the people whose welfare is most affected by public policy with information and involving them in their own struggle.  

This is not the way things were done when I entered this system in 2000.  During the Service Delivery Reform effort, my introduction to this system, California's DD policy and Sacramento, stakeholders represented peers who were strangers.  A good person elected by a dozen or a hundred others to represent People First spoke for 200,000 strangers.  Someone selected by the State Council on Developmental disabilities spoke for the same 200,000 strangers.  A few associations sent lobbyists or representatives (of which one was Marty.)  These associations might have 100 or 200 members each or ten or twelve, and they would speak for their 8,000 peers, the overwhelming majority of whom were strangers.  ARCA would speak for their members and the 8000 providers and the 200,000 clients.  SEIU spoke for workers in the field, of whom, maybe, a few thousand were voting members and 100,000 were not consulted in any useful form or fashion.

Marty shared inside late-breaking information at all hours, to anyone interested.  Somewhere around 50,000 people are now kept up to date and provided a platform for input through Marty's efforts.  Is it possible that any stakeholder group ever gathered by DDS included the will of 500 people who had been substantively consulted or that 1000 people ever learned what had been discussed by any other channel?  

In an open vote in a public place, the proposition that our work ought to be person-centered would receive something near consensus.  In that same forum, we would pass a resolution for the dignity of every person with disabilities and their right to informed consent.  Any group of us with strangers watching supports the inclusion of people with disabilities into the whole tapestry of our society.  "Nothing about us without us" would be acclaimed at convention up to the rafters and down the street, born on the shoulders of confident advocates and electric wheelchairs.

In our system, there is always room for disagreeing with one another, always room for arguing with one another, and outside of the present emergency, even some room for pillaging, cheating and insulting each other.  But if we understand those principals we claim to uphold, there has to be room and support for the distributed, democratic and collective advocacy that wasn't here before Marty put it here and isn't likely to remain if he departs.

18 comments:

paul said...

“It is about advocacy that remembers we are one community together – not one lifeboat for some.”
-Marty-

It is hard to disagree with “One Love! One Heart. I agree

I have rarely* seen evidence of individuals or organization approaching advocacy from the view that, “…we are one community together”, but maybe Marty keeps better friends.

I have seen plenty of evidence, going back over 8 years, of organization and individuals approaching advocacy with the, “me and mine” mission statement.

Any objective person or organization that fails to identify or show allegiance to a particular “community” is usually marginalized by everyone. This very “subjective” nature of advocacy makes is almost self-evident that we have NEVER been close to “one community together”, or valued a more objective definition of "fair". We have not even traveled in that direction.

So what is the kurfuffle her, today, now? What makes our profligate movement so much more distasteful today? Has the status quo gone from bad to worse?

I gather from Marty’s message that our “advocates” threaten to commit advocacy felonies instead of the usual misdeamenors? I understand Marty’s frustration. But horrific behavior flows naturally from poor behavior. The misdemenors from yesterday that have lead to today’s felonies were, in the least, tolerated, if not encouraged, by those making a living as a “voice” of everybody and their brother.

If this is the case then the kerfuffle is more about the natural progression of yesterdays bad behavior, which is worse behavior, and not so much a stand against the behavior itself? It is not a stand against stealing, but stealing "too much"

“… the illusion of safety in the proverbial life boats sometimes offered by policymakers and by even some advocates, that intentionally or not, have the impact of dividing us by department and eligibility for a service.”
-Marty-

Prospective changes in policies (better known as grandfather clauses)ARE NOT “proverbial life boats” but actual life boats as a matter of law.

The genesis of the 2004 eligibility changes was likely the work product of an Association of Regional Center Agencies task force that was most likely comprised of some family members of people with disabilities!

I believe some prospective eligibility changes are once again on the table of consideration.

“One community”? “One Love? One Heart?” A good message for a politician, but it may seem a bit disingenuous to some at this point in the game. To act “shocked” because our “advocates” have kicked it up a notch during these severe times seems a bit…

Let me put it his way:
I would rather be stuck on a desert island with a bunch of wall street executives than "advocates" of people with disabilities.

present (and some not present) company excluded of course. the world is never so Black and white.

Doug said...

Hey, Paul. First things first, I meant what I said about coming to contextualize not to praise. I don't want a referendum on Martydom here. That said, a few points:

I have rarely* seen evidence of individuals or organization approaching advocacy from the view that, “…we are one community together”, but maybe Marty keeps better friends.

I have seen plenty of evidence, going back over 8 years, of organization and individuals approaching advocacy with the, “me and mine” mission statement.


I agree with this but it reminds me of a meeting I was at with several well known advocates (but not Marty) We were putting together some thoughts for (hopefully) positive change in the regulations for this system and I suggested putting our thoughts up online in a format that allowed public input before giving the eventual paper to the various dignitaries and authorities. One advocate's response was "policy is never made that way," My re-response was "No, it's always made this way. Forgive that I'm unimpressed."

I think there is a better way of doing things and in a crisis, it is more important to do things the better way and more costly to do them dumb. Many people get stupid in a crisis. Tempers get short in a crisis. It's good for anyone to strenuously remind us what we'd have learned if we'd paid attention.

"But horrific behavior flows naturally from poor behavior. The misdemenors from yesterday that have lead to today’s felonies were, in the least, tolerated, if not encouraged, by those making a living as a 'voice' of everybody and their brother."

That was kind of my point and probably at least part of Marty's. Kudos for putting it better than I did.

"Prospective changes in policies (better known as grandfather clauses)ARE NOT 'proverbial life boats' but actual life boats as a matter of law.

True, and as I recall, you objected to them on that basis at the time. I think "selling out" your neighbor were your words, with which I did and do agree.

I think we all know this is going to be a terrible process. It seems to me there are two possible categories of response. One is for each of us to try and protect ourselves by finding someone else to suffer our cuts. That is usually called "realistic." The other is for all of us to object together. That is usually called either "kumbaya" or "Marty."

I have a lot of questions about the reality informing the "realistic" approach. With so much cutting to be done, can we really protect x by sacrificing y or are we just going to end up with everything cut to the bone or beyond. If the latter (which goes with my suspicion,) at least the kumbaya/Marty approach leaves us with friends and alliances to build back on and might maximize the chances that some cuts to something get replaced with a revenue solution.

Just to say this out loud and in public, I'd rather the $234M proposed cut to DDS were doubled than see Healthy Families eliminated. But I can stay on my own side of this argument by opposing both cuts.

paul said...

“Hey, Paul. First things first, I meant what I said about coming to contextualize not to praise.”

A wise policy.

Would you agree that “The Meaning of [proper name]” in the title of a BLOG post will almost certainly sound in part, or be received in part, as a referendum on the [proper name] – intentions notwithstanding. Do you think that any replies might have the smell of a referendum even if that is not the intention?

Can a person contextualize Keynes and completely avoid the smell of a referendum on monetary policy? Can you make coffee without creating a little steam?

I will try my best.

What I am trying to do (as far as I am consciously aware), most likely very poorly, is contextualize not Marty, but his sabbatical, and more specifically try to understand the motivation, and reason for that sabbatical.

I understand that this was not the subject of your original post, and for that I ask to be excused.

I do not see how the behavior of our advocates has changed in the last 10 years, beyond perhaps the frequency of poor behavior during these economic times. Therefore, I cannot understand how the alleged poor behavior of advocate today can be the motivation behind the sabbatical of CDCAN, Marty, or any other advocate.

Can I engage in a little parsimony without a referendum on Occam? ;>)

PS Strong agreement re: Healthy Families. I think that our wish will come true.

Doug said...

"Would you agree that “The Meaning of [proper name]” in the title of a BLOG post will almost certainly sound in part, or be received in part, as a referendum on the [proper name] "

Uh, yeah. Fair enough. "Do I contradict myself? Very well, then, I contradict myself." -Walt Whitman

As to the rest, you would have to ask Marty about the reasons for his "sabbatical" but I disagree with your premise. You and I and, but more often and more strenuously, Marty have all deplored the behavior of our advocates.

Unlike me, (and maybe you) Marty has not only put forward another model of advocacy but has demonstrated an improvement in terms of being heard and considered by the government. I have no trouble seeing how, in the middle of the worst crisis in the history of the Lanterman Act, watching our advocates behave as if they'd learnt nothing in that time, might frustrate him. It frustrates me and I've sacrificed little for change.

Parsimonize to your dark heart's content, friend.

Now to nit-pick a little, your Keynes analogy is backward. My request was more similar to a discussion of the general theory of money, interest and employment without discussing Keynes' elitism, not the reverse.

Anonymous said...

I think what we have discovered is that nobodies advocacy is selfless.

Doug said...

Anonymous, I don't think that's a new discovery.

A good rule of thumb might be anyone who speaks for someone else has something to say.

paul said...

“I think what we have discovered is that nobodies advocacy is selfless.”
Anonymous

Anonymous,

I agree with you and I agree with Doug. It is not a new discovery. It is human nature. It is not bad itself (because it is not avoidable) – IN MODERATION

What curdles my stomach is not the realities of human nature but the lack of its moderation by our alleged “advocates”.

In my opinion the human nature of our advocates goes beyond the pale more often than it should. The fact that it is often done under a cloak of magnanimity goes beyond curdles and in the realm of projectile vomit.

HOWEVER, I also believe that there is usually no malice involved when human nature is not moderated by our blue bloods. That is – more often than not I think that most advocates truly believe that what is good for them and theirs is also good for “all” either directly or through a trickle down effect.

This belief is either genuine or placation for the cognitive dissonance that eats at our “advocacates" when they patently fail to moderate “human nature”.

I believe that this miasma is partially the result of what California advocacy has immatured into as a result of our conscious and unconscious values and actions.

Our advocacy has become more about the “advocate”, or what I like to call the advodiva rather than the actual people served. While I understand that in the political world of Sacramento this is needed , even in large portions, but when taken too far, or to places far removed from Sacramento, such a culture can have a very negative impact.

The “Angels and Demons” aspect of our movement means we give more credence to the WHO, and little credence to the WHAT and WHY. The grand panjandrum that we have created ourselves not only fail to moderate human nature, but probably fan the flames.

The weak amongst us do not believe that they have to work with, or care for, the weakest amongst us because they believe that they can be politically overpowered. Ironic.

After all these years, we have NO organization that advocates for people as a matter of law. That says a lot.*

Such a culture does nothing to foment the healthy and continuous self reflection and analysis that is needed to make change and improve the lives of people with disabilities in lieu of padding the resumes and egos of those that see themselves as a Super Advocate.

“I disagree with your premise.”
Doug

What premise is that? That, “the behavior of our advocates has [not] changed in the last 10 years, beyond perhaps the frequency of poor behavior during these economic times.”

* "as a matter of law" In a nutshell:
If Lanterman states that every consumer is entitled to a pack of cigarettes a day there exists NO publicly funded organization that will advocate for that pack of cigarettes IN SPITE of that organizations beliefs regarding smoking.

There is certainly a place to question an entitlement to a pack of cigarettes and advocate the removal of that entitlement from Lanterman! But - there is DEFINITELY a place for advocating the entitlement as a matter of law, until it is removed! But we do not.

Advocates cherry pick Lanterman and until this is ends we can NEVER be “one community”.

I know of only ONE person in California that has given a complete and accurate reportage re: the Olmstead decision. That person is Marty Omoto.

One person, out of all our "advocates"

paul said...

"Advocates cherry pick Lanterman and until this is ends we can NEVER be “one community”.

If we cherry pick Lanterman can we be taken seriously by Sacramento when we advocates for rights and entitlements under Lanterman?

stanley said...

not sure what this has to do with Marty...but

[paul say] Our advocacy has become more about the “advocate”, or what I like to call the advodiva rather than the actual people served... when taken too far, or to places far removed from Sacramento, such a culture can have a very negative impact...The “Angels and Demons” aspect of our movement means we give more credence to the WHO, and little credence to the WHAT and WHY. The grand panjandrum that we have created ourselves not only fail to moderate human nature, but probably fan the flames. [end paul say]

dont know much about WHO, WHAT and WHY. And the grand panjandrum...but a lil about advocate Angels and Demons...mostly demons based on being one (hopefully recovering).

“Worser” than more about the advocate is...its more about the advocates ego...and in some cases about advocate livelihood...eg, an advocate paid to lobby for ARCA (who recommends program cuts)...then there is the cottage industry of consultants/medical types/lawyers who prosper thanks to special needs folks

thenthen, there are the parents/friends like me who become involved...eg, board members, in hope of gaining favor for me/mine...tho didnt work for me: got my daughter kicked out of a program...weel it did work as getting kicked out of the program was the best thing that could happen.

not sure even a moderated human nature is good...much evil is excused as human nature.

fanning the flames has produced a suck up, system gaming, society (SSS)...an unholy, unbroken, circle that works (feeds itself) clockwise or ccw...to the detriment of those with special needs...paved the road to their hell.

certainly no easy answers...well maybe adherence to an old saw: the truth will set us free...break the circle...rationalizations certainly havent.

stanley seigler

Doug said...

Sorry, Stan and Paul. I didn't realize there were new comments here.

And Paul, I can't quite tell what premise I disagreed with. My best guess looking back is the premise that advocacy has not changed in ten years. Most of it hasn't, but change rarely starts with most.

Stan, I bring the following up not to gloat but I posted about why I thought the stakeholder group was a fraught notion to start with. To recap, I suspect the majority of stakeholders in the community would object to being represented by the majority of stakeholders in that room. Also, as you pointed out, people sat in that room and discussed cuts, then had to sit in another room and testify against the cuts made in the first room. Just going to those meetings created all kinds of dissonance and highlighted all kinds of hypocrisy. A friend has noted to me the portion of cuts proposed to parts of the system that weren't represented so we might figure the stakeholders own a fair bit of the damage done.

I appreciate your conclusion.

paul said...

“My best guess looking back is the premise that advocacy has not changed in ten years. Most of it hasn't, but change rarely starts with most.”
Doug

I could disagree with my assertion without hesitation because who knows what it is that we mean by “change”

Yesterday I heard a man at the grocery store say, “people have not really changed in 1000 years”.

His buddy retorted, “Yes we have – now we drive cars and buy our food at Von’s"

Doug said...

Just my point, Paul. It hasn't been that long since we had to grow our own advocacy.

paul said...

“Just my point, Paul.”

But – not mine, if I read you correctly.

I am not speaking “change” as measured by our “industrial revolution.” I am talking about the people, and their purpose, behind our revolution.

Perhaps a lousier analogy can make things even more confusing:

I am not comparing “spears” to “guns” when I speak of change, but whether or not we use our guns to provide food, or protecting and expand ‘our’ territory, others be damned, as much as possible

Sure – we have:

The Internet, networks, stakeholder groups,
caucuses,
coalitions,
junta,
cabals,
associations,
and community action networks…blogs,
list-servers,
committees,
focus groups..etc.

Folks are more organized. The signs are bigger, bolder, and more people hold them high, BUT….

Sure – we have these things in much greater quality and quantity than 10 years ago. So - In ONE manner we have changed. We have certainly have MANY more venues to misinform and misdirect people with disabilities with our collective opinions. Maybe tomorrow we will be able to beam a mini-princess Leia like Doug (or in my case a mini ja ja binks) onto our coffee table, to opine (or in my case bloviate) about the ill du jour and the panacea.

So I agree “It hasn't been that long since we had to grow our own advocacy.”

But that is not “my” point when I say that we have not “changed”

Doug said...

Paul, I still think that there is a supermajority out protecting turf, but a growing minority interested in making the system work better.

Andrew said...

Part 1 (again! 4096...sheesh!)

Dawggawnit! I missed this whole thread, til now. (This damn budget bull- - has caused so many distractions!) First of all, for my pal Paul, who wrote:
. . . The genesis of the 2004 eligibility changes was likely the work product of an Association of Regional Center Agencies task force that was most likely comprised of some family members of people with disabilities!

Your point (the betrayal by advocates) is well-made, but might need another example... it shouldn't take long to find one. It's my understanding that "the eligibility change" was the work of Dept. of Finance, as are most attacks on the system's ballooning numbers. You don't grow like this system has grown over the past 25 years without attracting a lot of ongoing and unwanted attention from DOF.

Like most of us claiming an advocate's role, I'm sure ARCA's got a cellar full sins for which it can rightfully seek atonement ... but I'm not sure this one is theirs. Some complicity, perhaps, like a lot of other advocates who felt they'd give this one unto DOF (in the guise of the governor)---the numbers are so small, most folks thought---in exchange for keeping what they saw was bigger coin.

(Paul, you were one of the few who did the math on this, and correctly gauged it’s ensuing effect and long-lasting devastation, but it's now time to be right about something else. You're never going to be a cowboy, unless you ride more than one bronc.)

Back to the point---as I'm allowed a mere 4096 characters ... (yes, characters! not 4096 words .... 'cause if it was words, I'd be posting about deinstitutionalization—big, long words—all over the place) ... so, from beneath the jackboot's heel, I bow and scrape for my few pitiable words and give thanks to Tyranny of the Terse … as I scurry back to my point ...
. . . . (I'll admit, I forgot what it was for a minute or two, but I remember now....two points, in fact. Some thoughts on why our advocacy is so repetitive and incoherent or contradictory, and a thought given unto Marty)

. . . First--and I don't know how to put this gently, and I’m sorry--the ranks our industry's 'professional class' is almost exclusively filled with rather dull, lethargic, unthinking people. I am forever amazed at how little one needs to know or learn to advance into positions of authority and control. I think our field breeds these characteristics which, perhaps, reflects the unchanging marginalized status of the people we serve.

Andrew said...

PART 2

I spoke to a bright, young woman with degree in Anthropology recently, with no experience in the field, who was interested in knowing what she should learn to get started and to gain entry. I thought about it for a moment and told her, "a handful of the right words should do it…. a little bit of the language" I told her that if she wanted to enter near the top, rather than the bottom, she could spend a few thousand dollars and devote a few months to research, and reading some regulations. Then she, if she wanted, she could enter our field as the Executive Director of her own service organization.... and, depending on the category of service she chose, she could be paid more for her services than many providers with years of experience, including me.

She didn't believe me .... and she shouldn't have. But it's true.

I gave her a book from a stack I've been collecting for a resource library, "The New Disability History: An American Perspective," edited by Paul Longmore. I told her that if she read the book she would know more about disabilities---disability rights, issues, history, trends, theory, etc.---than the most of the people currently working in adult services. Not that she’d know more of the system, perhaps, but the population, certainly.

I pointed to the stack of books and said that if she read five or six of the books in the stack, over the next few months. she'd be one of the most knowledgeable of the 100,000 people or so, employed through the California's DD service system …. top 5%. She was incredulous.

Andrew said...

PART 3

I don't believe our professionals are that much slower than those in most other service-based industries, whether commercial or quasi-governmental. But our system is very different than most any other, and it creates, I think, a kind of "welfare-class" of its professional practitioners.

So much is given for so little effort, there is no need to learn, no need to grow professionally, no need to hustle, to compete, to gain that little edge to inch your service ahead of the others. You are given what you need to keep plodding along … unaware and uninterested in anything different.

When I attend the board meetings of our regional center, eight times out of ten, I am the only provider in the audience. I imagine this is not uncommon among the 21 centers. The meetings are, afterall, held at night, at 7:00 pm … and its dark in the winter.

To attend this meeting, once a month,(on a Monday evening in our area) is to stay in touch and remain aware of what's going on with your sole, source of income,(for many us), your one (or, at least, most biggest) paying customer and the source that, most likely, sends you all of your business. This minimal interest in your biggest or only customer, isn't worth the effort or inconvenience for 99% of our providers. How long could they survive like this, in any other business? Simply attending one meeting, once a month, makes you one of the most knowledgeable providers in your area. ... Read a book, or two, and you will attain god-like wisdom and understanding! But, so what? Nothing changes if you don't.

Many of our advocates come out of this environment. They are the ones at the board meetings, on the SPACs and VACS, and they are, by default, our experts. If it's that easy, anyone can do it ... and it is ...and they can ... and they do. Maybe they are not our best nor our brightest, not our most strategic nor most thoughtful .... they're just more diligent than the others ..... which does nothing to enlighten one beyond one's shallow or narrow self-interest. If gets them simply to show up …. and moves them well beyond everyone else.

The fact that I am considered one of the most creative, innovative, visionary thinkers in the state, tells you all you need to know. If you placed me in any other profession I would likely ascend no further than that industry's equivalent of, "Would you like to Supersize your meal, for only a dollar more?" I'm not complaining, don't get me wrong ... I'll take status over stigma any day. But I know who I am, and if I'm a star ... it's a dark damn night.

As much as we praise and protect it, fight for it and fend off its attackers, hold on and hold out through every siege launched against the Lanterman Act, we must, at some point, admit that it bears some responsibility for the kingdom it has created … and that which we defend to the death. It is a wonderful and thoughtful piece of civil rights legislation, but like many other legislative dreams and ideals, some of its effects can run counter to its intent. I don't know what I would do to change it (other than offer to Supersize it ... ). I don’t know if the problems lay in it's interpretation and regulations, but until it, or it’s regulations, or our profession requires much more of its members, and our profession begins to bear some passing resemblance to the market realities of almost every other industry, I can't see anything really changing. I can't see anything but the same reactions, and the same responses, and the same results.

Andrew said...

PART 4 -- (I thought I could cram it all into three parts! ...if you didn't mention HIM in the title, I could have skipped this part .... 4096! Why? I oughta go back to CAL-DD. I could own that place now ... absolutely dominate it. "Dominate on three ... one, two, three, DOMINATE!")

And Marty? Exactly the opposite of what I've described. Thousands upon thousands of people (including me) are receiving accurate, pertinent, detailed, and critical information, almost instantaneously ..... for several years now, and as never before. That this was accomplished through the efforts of one person making maximum use of one tool (the internet), is truly remarkable.

Marty has a sense of urgency. I found something very similar overtaking me, a couple of years ago, and I've noticed it can make others around you, uncomfortable. If you feel it, you understand it, and I don't think it goes away.

I don't know Marty's career beyond what what I've read from his work. If he has done nothing else, and if never does anything else, he has done far, far more than nearly everyone else.

....(damn! damn! damn! Now I have to send a donation or I'll never get to sleep. Not without spending the money anyway—more money than I’ll send, that’s for sure—on drinking enough to becalm my conscious ... Or, I could stop reading his stuff for a little while ... like I do during public radio pledge drives)

--Andy