Disability, Disability Rights, Uncategorized

We Shall Overcome: Our Collective Power to Strengthen Each Other

A year ago, I transitioned my blog to www.matankoch.com/blog.  I’m aware that some of you made the transition, and some of you did not.  So important do I think this particular message that I’m posting this one to this site even though it is officially inactive.  If you would like to find my more recent work and my new work going forward, please visit the above site.

I log onto Facebook and fear is everywhere: will I lose my rights, my bodily autonomy?  Is this a prelude to the end of a steady arc that began in the days of Earl Warren, and his continued through recent Supreme Court cases and through executive orders?

Nor is this fear unjustified.  Mike Pence has already announced that the executive orders protecting LGBT Americans will be rescinded on Inauguration Day.  We have every reason to believe that Roe v. Wade will be under fire in a Supreme Court with vacancies filled by Donald Trump, and federal protection for Dreamers may soon begin to look like a nightmare.

So what are we gonna do about it?  It’s absolutely understandable that we are gripped with fear right now.  Let’s give ourselves a little time to get it under control, I say a week, Max.

Then we need to remind ourselves how we got so far.  Pres. Obama has been a luxury of sorts.  When was the last time we saw our issues championed by Executive Order?  Certainly not in the Clinton era.  Eisenhower, Kennedy, Johnson, Nixon, all presidents during times of amazing social change.  But they weren’t leading the charge.  Our predecessors marched, they occupied, they protested, they ran for office.  We don’t have protest songs because Joan Baez and Bob Dylan were bored, we have them because of the imperative of moving a generation to action.

Well my friends, we just lost the luxury that was Barack Obama.  There will be no executive orders championing our issues (quite the opposite), the solicitor general will not be an advocate for our rights in the courts, and the next Supreme Court will be unlikely to give us the next Obergefell.  That sucks.

So we’ve got to fight.  We’ve got to march and we’ve got to challenge.  We’ve got to recruit allies at every level.  Can’t win Congress because of redistricting?  Let’s take over our city councils and our state legislatures.  Can’t put our people in office, vote with our feet in the streets until those in office have no choice but to listen.  The still unfinished arc toward racial justice started with bus riders and restaurant sitters.  We had a national movement of conscience and then Congress began to act.  The rehabilitation act of 1973 was a toothless piece of paper until people with disabilities occupied federal buildings, and forced people to see our humanity.  Time to brush up our protest songs, or write new ones, and take to today’s battlegrounds, maybe marching to use restrooms that don’t match the gender of our birth, even if we identify with the gender of our birth , in solidarity with our trans brothers and sisters.  The EPA was a reaction to an environmental movement, and if a climate denier is going to be in charge, and we need to step up where the agency fails, and make it so that those that would take us off the climate cliff embrace green policies because to do otherwise would make it untenable for their business.  I was on a conference call today or someone said we have to take to the streets.  If the next four years mean that government is not the answer, and indeed we must

But even protests are not enough.  If we can’t get employment protections for LGBT brothers and sisters, then we use the awesome power of social media to boycott the businesses that take adverse employment action.  If our brothers and sisters with disabilities find themselves losing the basic services that they need to live, let our able-bodied friends lend a hand while we fight to get them back.  If immigrants are harassed on the street, form a protective circle of love and defense against the hate to show that we’ve got their back.  A cat call or physical assault on any woman should invite the defense and rebuke of us all, let none walk idly by.

On its best days, government harnesses our collective energy for the greater good.  Our government looks like it might temporarily fail us.  So we have to do is in the way that’s a little more messy, and harness ourselves.  Over 50 million people voted with us on Tuesday and more than a few of the ones that didn’t were duped, and I believe will defend their fellow Americans when the truth is known.  If our leaders won’t unite us for change then we must unite ourselves.  Too every person who justly feels afraid, let us send the message, we’ve got your back.

So here’s my perspective.  Did the fight just get harder?  No question.  If we look at the Obama years as a baseline, despair is right around the corner.  So I recommend a shift in perspective.  Pres. Obama’s leadership was an unprecedented positive deviation from the norm.  Now the barriers for change are going back to where they always were.  It’s important that we remember that this, not the Obama years is the baseline, and remember the progress made, even under presidents like Nixon and Reagan.

I can’t address some of the angst that comes with Trump.  I certainly share everyone’s fear of someone with his demonstrated temper with access to our nuclear launch codes.   And his personal social mores make me nauseous.  But Lyndon Johnson was a misogynist buffoon while feminism was rising in power, Richard Nixon was a racist, and whatever we think of the Kennedy and Clinton years from a policy perspective, none of us are going to really argue that those men demonstrated great respect for women.  They could not stand against the tide of progress, and neither will Donald Trump, because we won’t let him.  We will fight.

Compared to the last eight years, we are facing a dark time.  But we have thrived in such times before, and I choose to take the lesson that we have the tools to do so again.  We have 10 weeks to prepare to fight.   I’m gonna do everything I can to have the backs of my brothers and sisters, all figurative and literal.  Who’s with me?

Disability, Disability Rights

Cartographers Needed: Looking to Draw a Roadmap for Change

I have not yet seen the movie, Selma, but there has already been plenty of controversy in the press, including some interesting comments by Oprah Winfrey regarding the current protest movement.  Recently, the Washington Post reports on a People Magazine interview where she said of the movement, “’I think it’s wonderful to march and to protest and it’s wonderful to see all across the country, people doing it,” she said in a video interview posted Thursday on the magazine’s Web site. “But what I’m looking for is some kind of leadership to come out of this to say, ‘This is what we want. This is what we want. This is what has to change, and these are the steps that we need to take to make these changes, and this is what we’re willing to do to get it.’”  See the Post article linking to the People article.

I am singularly unqualified to speak to the agenda of this movement, and whether it indeed lacks these things as she asserts, but I am nonetheless moved by Oprah’s basic point that a diffuse spirit of protest is far less effective than a targeted goal, with a detailed roadmap, and a set of tactics and strategies to advance that roadmap.

I feel that the Disability Rights movement has historically been quite good at this, just as the African-American civil rights movement was at the time of Selma.  In fact, when it comes to particular initiatives like the push for CRPD ratification or a few recent legislative initiatives, we still are.  We have goals and strategies and tactics.

I’m hoping that we can apply that energy to some of our other massive problems including unemployment, institutionalization, and massive poverty.

I think we’ve done a great job of articulating the problems.  Any educated team of disability activists could quickly come up with these and some others, and just as easily begin providing numbers to demonstrate the breadth and nature of these problems.

Where I would love to see energy and leadership is in coming up with specific, actionable, and practical solutions.  Maybe it’s just me, but I feel that even if Congress and the President were to allow me to unilaterally write laws, I don’t immediately know what laws I would write within our governing framework to solve these problems.

It’s easy enough to mandate the closing of institutions, but have we gathered models of the programs that work to find everyone appropriate community-based placement?

In theory, a person with such absolute power might consider alleviating poverty by the direct broadscale redistribution of wealth, but as a committed American capitalist, that doesn’t strike me as a viable long-term solution, let alone one that would ever be enacted by any democratically elected government.  For those of us for whom self-sufficiency through employment is not practical, have we thought through the best programs and vehicles which will provide optimum dignity and comfort?

Lastly, even if we believe, as I do, that the vast majority of poverty could be alleviated by full employment, have we come up with proven, systemic, large-scale programs that People with Disabilities to work in a way that is both meaningful and economically viable?

These questions are not rhetorical.  I believe every one of these problems is solvable, and people smarter than me may already have the solutions.  I’m asking these questions in the hope that we can gather these solutions into a centralized agenda.

Then I call upon our best political strategists.  Since we don’t run the world, (and who would want a world run by me anyway?), what is the natural coalition that could make these programs a reality?  What combination of protest and persuasion, cajoling and horsetrading, exhorting and shaming will get us the programs that we need?

From there, just as we did with the ADA, and with the Rehabilitation Act before that, I propose that we come together on a broad national scale to get it done.  I propose that we combine our individual strengths into a massive united effort for change.

I believe that individuals change the world.  I believe that each individual policy changed, each individual life improved, has value beyond measure.

And yet, I believe that for the largest and most intractable problems, grander scale solutions are needed.  I don’t have them, so I can’t propose them, but I’m asking for them.  Join me in starting the dialogue, that together maybe we can find the answer.

Disability Rights

A New Day for Disability: Bipartisan Opportunities and the Road Ahead

Yesterday was not a happy day for me.  A registered Democrat since my 18th birthday, I make no pretense of nonpartisanship, and my party, and many causes that I personally champion, from climate change to consumer protection and a woman’s right to choose, took a hit.  Such is the life of one who lives in a democracy.

I want to challenge everyone, however, not to accept that disability rights is among those causes.  Starting with the mantra that I learned on my first day as a disability activist, from my boss who had worked in George H.W. Bush’s White House, disability is not a partisan issue, or at least it shouldn’t be.

The ADA was a collaboration between Reagan appointees, Democratic and Republican Senators and members of Congress, and activists of all stripes and parties.  It was enthusiastically signed by the first President Bush.

Disability, tied up as it is in questions of human dignity, ennoblement and opportunity, is an issue where individuals of every political philosophy can find resonance.

Disability issues run the spectrum, from libertarians empathizing with Olmstead’s embrace of individual freedom and dignity, to pro-business and market activists who understand that the greatest uplift of the disability community will come from helping us to find jobs and become economically self-sufficient, to traditional progressives and traditional conservatives, both of whom should be advocating improvements to our safety net, since both philosophies emphasize that a truly great society does not allow its least fortunate members to slip through the cracks.

Most importantly, with one in five Americans being a person with a disability, disability is personal for nearly everyone, and could quickly become a life reality for anyone.  As I wrote in an earlier piece, in many ways disability is ideal for reaching across the aisle.

This is not to say that the Republican Party platform has been particularly friendly to disability issues of late.  A true repeal of the Affordable Care Act would be disastrous for people with disabilities and the fear mongering and isolationism that continues to keep the Senate from ratifying the Convention on the Rights of Persons with Disabilities is nothing short of shameful.

Rather, it is to say that there is nothing central to being a Republican that requires one to oppose these or other disability issues.  The Affordable Care Act was patterned after a Republican idea from Massachusetts, and is predicated on the idea of solving the nation’s healthcare problem using market forces, something that seems to me to be a core conservative idea.  Republican icon, former Senate Majority Leader and 1996 presidential candidate Bob Dole has been a tireless champion of the CRPD.

The purpose of this post is not to analyze the toxic Washington partisan forces that have pushed political stances coming into this election.  Both Democrats and Republicans sacrificed practicality in wars of ideology.  But that’s a topic for a political blogger, not me.

As a disability blogger, I would rather focus on the fact that the disability agenda is, for the most part, an agenda that has as much room for deeply held Republican values as it does for deeply held Democratic ones.  This is the activists’ challenge, specifically those that identify as liberal or Democrat.

Put partisanship aside.  Understand the values that drive the individual legislators with which you are dealing.  There are 535 of them, and while a few of them may be corrupt, the vast majority have foregone lucrative life opportunities because of a strong desire to serve.  If they vote differently than you would like, it’s because they believe that a different path is in the best interest of this country, not because they are craven comic book villains acting in depraved self-interest.

Sometimes, then, the goal is to persuade.  I like to think that people of conscience who are mistaken are open to thoughtful persuasion, but even this is a red herring to disability activists, I think.

Much more important is to figure out how those differing opinions and beliefs still support righteous outcomes.  I engaged in a very brief exercise above, a cursory paragraph explaining how traditionally Republican values support important disability causes.  Cursory, but not frivolous.

I really do believe that large parts of the disability agenda are perfectly consistent with conservative of ideology, and the goal of any thoughtful activist should be to realize that, flesh it out, and convey it to our legislators.  The biggest strength of the disability agenda is its universal nature.

So I challenge you to work with that.  In January, 535 men and women who want the very best for the United States of America and its citizens are going to be sworn into office.  I implore everyone to be ready to work with them, to show them that what is best for us is consistent with their deeply held values and is indeed what is best for all Americans.  This is our challenge, and I know that we can do it.

In the words of Justin Dart, himself a lifelong Republican, who broke ranks with the party only when its platform abandoned the values which I believe many of its members still hold, “Lead on!”

Disability Rights

A Lesson from Greenpeace in My Kind of Activism

*Disclaimer: I do not intend by this post to endorse violent actions or destruction of property, whether by Greenpeace or any other organization.*

I have never chained myself to anything.

I can count the number of protests that I’ve attended in my life on one hand. I simply lack the attention span and the mindset to be a good demonstrator.

I’ve often felt bad about this. I know that without the brave men and women of ADAPT chaining themselves to buses, without demonstrations in DC and in state capitals, and without heroic actions like the historic occupation of the then Department of Health education and welfare building in San Francisco and similar protests in 1977 which led to the issuing of the first 504 Regulations, I would not have basic civil rights today.

I have been privileged, however, to have some opportunity to be a part of positive change. In my undergraduate days, I was privileged to work with my university as they completely revamped their approach to disability. I have been privileged to work with my employers, small and large, to help them to address disability issues. Especially meaningful to me, I have been honored with opportunities to work in disability public policy, first as an intern lobbyist, then as a municipal intern, then as a city political appointee, and most recently as a Presidential appointee.

Nonetheless, I have gone around with the sense of inferiority. I was gratified, therefore, to read a recent article in the Guardian about the newly appointed head of Greenpeace USA.  Says Annie Leonard,

“You don’t have to sleep in the park. You don’t have to chain yourself to something.” The organisation had to be receptive                  to all forms of activism, she said. “There has been a bit of a hierarchy of the people who chain themselves to the fence or go                on the big TV talk shows are somehow of higher stature and are more important than the people who make sandwiches. But                making sandwiches for the protesters is really important too. We have to figure out a way for them to plug in too.”

Her final quote in the article ties these statements to a call to action. In her closing prescription, Leonard says, “Building a movement really does require all kinds of people, so it is our job to make this work accessible and relevant to all kinds of people.”

Now, I will not accuse the disability rights movement of having the same preoccupation that Ms. Leonard attributes to the environmental movement, because I simply don’t have the perspective to judge the movement. I will say that I was guilty of this type of thinking, and used it to judge myself most harshly. I choose to learn from Ms. Leonard, to be receptive to all forms of activism, and realize that I can do the part of the work that is accessible and relevant to me.

For prescriptions, I will say only this. If you are like me, and not particularly suited for protesting, for chaining, or for demonstrating, give yourself a little break. Rather than chastising yourself for the aptitudes that you don’t have, or worse, using them as an excuse to do nothing at all, let us be guided by Ms. Leonard’s wisdom, and find our own role doing something that is “really important too.”

Disability, Disability Rights, Law and Lawyers

Common Ground: Can Disability Provide an Angle to Move beyond Partisanship?

I was fairly politically unformed when I worked as a policy intern for United Cerebral Palsy in Washington, but if you asked me, I’m sure I would have told you I was a Democrat. I’m pretty sure that both of my mentors were Republicans, since one of them had worked in the first Bush White House, and the other had a lobbying resume that one does not associate with the liberal agenda, but I honestly didn’t know, because we were avowedly nonpartisan. Disability, we said, was not a partisan issue.

Certainly, the heroes of the ADA include liberal icons like Coelho and Harkin, but also conservative stalwarts like Dole and Hatch. The law was triumphantly signed by a supportive George HW Bush, and aggressively implemented by Bill Clinton. Many like to think that this is because it is a cause so universally good or right that it transcends ideological bounds.

While certainly human sentiment played a role, I think that this is terribly simplistic. Very few people view themselves, or their positions as wrong, or evil. Rather, in the face of conflicting values, people choose based on the ideologies that are most important to them.

For instance, notwithstanding Mitt Romney’s taste for his own foot, I really doubt that he has anything against the idea of helping people in need. he is simply viscerally opposed to that help being provided in the form of government payments. He thinks that not good for society. I disagree, but this post is not about welfare.

So, then, perhaps the unity around the ADA was really a function of the fact that there was agreement upon both the goal, establishing legal equality as a foundation for economic and social equality for people with disabilities, and the means, enacting a broad antidiscrimination law. With neither side objecting to the other’s goal or means, cooperation was not only possible but desirable.

A recent column by Dana Milbank in the Washington Post noted that Ralph Nader and Grover Norquist had found common ground over the minimum wage. Writes Milbank:

Democrats have made the argument that an increase is morally right and that the only thing standing in the way is corporate greed. That may be so, but it hasn’t won them enough Republican support to get the increase through Congress. But what if Democrats were to make a free-market argument that a higher minimum wage would shrink the federal government and reduce the welfare state?

That’s the argument Ron Unz made to Nader’s gathering.

The government spends over $250 billion a year in social welfare programs aimed at the working poor,” he said, addressing the group via Skype. “If we simply made the working poor much less poor by raising their wages to a much more reasonable level, a lot of that money would be saved, probably in the range of $40 to $50 billion a year.” The $250 billion spent on welfare for the working poor, Unz said, amounts to a “massive subsidy for businesses” that are paying less than a living wage and “forcing taxpayers to make up the difference.”

Call me a cynical centrist, but I could paraphrase this long quote by saying, “Liberals ’ argument that this made them feel good was minimally successful at winning over economic conservatives. Once they were able to demonstrate that the apparent feel-good measure was also likely to be economically successful in raising the target population out of poverty, economic conservatives began to get on board.”

Now, I’m no fan of ideologues on either side, and God knows that there are plenty of folks in Washington today who vote ideology regardless of what makes sense, as was sadly demonstrated in the knee-jerk ideological vote against the ratification of the Convention on Rights of Persons with Disabilities (CRPD) in the United States Senate, despite the fact that it was patterned after the ADA, and supported by Senator Dole and the first President Bush. Further, I am liberal, and fundamentally disagree with the conservative positions on issues ranging from gun control to a woman’s right to choose.

That said, I think policy advocates in general, and disability advocates in specific, could use to do work finding common ground among individuals who disagree based not on ideology, but on a differing conclusion as to what makes good policy. Here, political deal making is not so much holding your nose to appease your opponent as addressing your opponent’s valid concerns. This passed the ADA, and, if we are to believe Dana Milbank, Ralph Nader, and Grover Norquist, could create a coalition around the minimum wage. Surely this will not appeal to true libertarians, and will be insufficient to appease true socialists, but, being workable policy for the laudable goal of raising partners out of poverty might be a blueprint to get something done.

Disability advocates should be looking for these points of commonality. As I point out in my Chutes and Ladders post, sliding scale premium, uncapped non-asset tested Medicaid buy-ins for working personal care users with disabilities is such an area. It promotes employment in independence while ultimately lowering costs of government benefits and raising quality of life for people with disabilities. The baseline for universal support among practical minded politicians is that the end is good in the numbers make sense.

We are always going to have areas of ideology where we disagree. My challenge to any advocate reading this is to begin building coalitions by helping reasonable people focus on the items that just make sense. As we come upon 24 years of the ADA, we have living proof of just what that can accomplish.

Disability, Disability Rights, Independant Living

Guilt, Privilege, and Paying Attention

Years ago, as a young law student, I wrote the following reflection, while working to guide and supervise a plaintiff in Health Law Advocates‘ successful lawsuit to secure meaningful dental coverage for those on MassHealth. I wrote:

Guilt is not an emotion that I grant too much time. I didn’t ask to be lucky, didn’t ask to be one of the few persons with disabilities to get all of the services that I need, including “Cadillac” services like twice yearly fluoridation, twenty-four hour Personal Care Attendants, and all the Durable Medical Equipment I need. I am no less deserving than anyone else. Yet, what gives me trouble is that I am also no more deserving. “There but for the grace of God goes me.” This rings through my head as I sit at my Vocational Rehab-purchased laptop reading about the tens of thousands just like me. Just like me, but not like me

Maybe they were not uniquely “lucky” to have a disability that left them with full cognitive potential and still photogenic enough to evoke a desire to help rather than the discomfort and ostracism. Maybe their parents were not as tenacious, or as well educated, or as committed, if they were present at all. Maybe they were not blessed with a school system filled with individuals determined to find their abilities, and to help them to grow into their full potentials. Maybe they did not find

a University institutionally and individually committed to their success, complete with tens of thousands of dollars and hundreds of compassionate person-hours of expenditures. Maybe they did not find advocates and allies at every level of Social Services, people that shepherded them through the twists and turns of a system in which so many people fall through the cracks, despite best intentions. Maybe they just didn’t have my knack for being in the right place at the right time. So many maybes…

I didn’t ask for my disability, or my wonderful services, and our twenty-first century sensibility says that the corollary is that I don’t owe any more than gratitude. Like heck, I don’t! Call it God, Karma, or luck, I am where I am by a unique confluence of incredible circumstances, of love and fate and the blood sweat and tears of more good people than I will ever know.

I’m here and others are not. Guilt is not a useful emotion, but let me transmute it into a sense of obligation. Only by taking my unique position and dedicating myself to helping others conquer their maybes can I justify the effort, love, and blessing that went into giving me the life that I have.

“There but for the grace of God goes me.”

It may be true, but Judaism teaches that we are all partners in the work of perfecting our world. We are all partners, and hence must work to be the mechanism by which one more person gets where I am, and one more and one more, until the problems that I read about today are just another set of unfortunate moments in history.

If everything happens for a reason, then I thank God for the wonderful people and opportunities in my life, and pledge to take the chance they gave me to help as many others as I can. I didn’t ask to be lucky, but I am. God, help me to never lose sight of just how lucky I am. But also, help me to never be take that luck for granted, and to do it appropriate homage by using it for creating as much good for others as I can.

In the dozen years since I wrote this, much has changed. The lawsuit was won. My words were used by a wonderful Rabbi to teach us all. And, I no longer get quite get all of the wonderful services I got then. What hasn’t changed is the conviction that I am fortunate, have had the luck to avoid a much more difficult existence, and feel that that obligates me to do what I can.

Also, I’ve learned that while my lucky turns, and where they could’ve changed, are fairly obvious, any one of us could lose health, physical ability or means at any time. “There but for the grace of God goes me.”, but there but for the grace of God goes you too. I know what I’m going to do about it, but what about you?