Author: aneeman1

Watch the Appointments

Betsy Devos prepares for her Senate Confirmation hearing for the position of Secretary of Education
Betsy Devos prepares for her Senate hearing for the position of Secretary of Education

Today was the first full day of the Trump Administration. I’ve just arrived home from the NYC portion of the Women’s March, and as we all settle in for Day Two of our nation’s first ever post-modern Presidency, a few thoughts come to mind. We each have a moral obligation to oppose Donald Trump’s threat to democracy in the domains we know best, and for me, that’s disability policy.

As I discussed in Vox the day after the election, our goal for the next four years should be to make disability a big part of the progressive pushback against Trump – and in doing so, strengthen the ties between disability advocates and other progressive leaders to make sure we’re ready for what comes next. The Trump Presidency will be a disaster for people with disabilities – but with the right tactics, we may get the silver lining of finally bringing disability into the mainstream of the progressive coalition. So let’s get to work.

With that in mind, it’s worth thinking about how to read the tea leaves on what to expect from the Trump Administration on disability. We already know that Trump intends to block-grant Medicaid, repeal the Affordable Care Act, and utterly decimate the funding base for disability service-provision over the next several years. To a significant degree, that’s not personal – it’s just conservative orthodoxy.

To be clear, these policies represent a horrifying loss of critical consumer protections and hundreds of billions of dollars in funding for disability services. They are the most consequential issues for disability rights advocates – because their passage will put the lives of hundreds of thousands of Americans at risk. Still, most of those promoting ACA repeal or Medicaid block granting are doing so out of the GOP’s usual approach of right wing copy-paste legislating. The impact on people with disabilities is far from their mind or comprehension – and so we have to look elsewhere to discover the Trump Administration’s more considered intentions for disability policy-making.

Personnel is policy

The vast majority of policy-making doesn’t take place in the White House. The federal government is a massive place – over two and a half million people work for the executive branch (not counting military personnel) and any administration must produce countless thousands of pages of policy and regulation in any given year. No President could manage all of this on their own, even with their White House staff. The President must appoint several thousand political appointees to manage agencies outside the White House and implement an agenda on his behalf. Unlike civil servants, who stay regardless of who wins an election, political appointees leave when their President’s term runs out, if not before, and are replaced by the incoming President. These appointees receive some broad supervision from the White House, but are mostly left to their own devices when they don’t need to propose a new regulation or make a budget request.

And so, the first big sign we’ll get about how the Trump Administration intends to approach disability policy-making will come in their appointments to the federal government’s key disability policy positions. The Assistant Secretary of the Department of Education’s Office of Special Education and Rehabilitation Services, the Assistant Secretary of Labor for the Office of Disability Employment Policy and a small collection of about a half dozen other jobs will give us our first real sense of who Donald Trump intends to be on disability issues.

There is a significant possibility that the Trump Administration will appoint people to these positions in the same way that past Republican Administrations have. Typically, the President delegates filling political appointments to an Office of Presidential Personnel, tasked with filling and as-needed refilling the various political appointments that keep the government running. Republican Presidents usually fill disability appointments from the ranks of prior Republican administrations, legislative staff for GOP Members of Congress, state disability policymakers, the occasional conservative think tank figure and other members of the conservative ecosystem with an interest in disability of one type or another. These appointees range from the highly competent, knowledgeable and motivated (there are a few Bush and Reagan administration officials on disability I continue to have immense admiration for and work closely with) to the in-over-their-head hacks who have a personal connection to the President and needed to be stuck somewhere. And everything in between.

As filling appointments go, this would be the best case scenario under the Trump Administration. We’d likely get some disasters muddling their way through, some good people doing the best they can as the White House undercuts them by slashing budgets, and various twists on the same general theme.  Disability rights advocates have a lot of experience working with Administrations staffed under these circumstances, and can make lemon from lemonade even with the less competent political appointees. Everyone has a learning curve – you make it work.

However, this is only the best case scenario. To understand the worst case, we need to take a step back and think about Trump’s only real statement on disability issues as a candidate. Politicians take a lot of flak for lying on the campaign trail, and in Trump’s case it is most deserved. But you can still learn a lot by seeing where a candidate’s mind goes instinctively when asked a question – sometimes, it reveals a rare area of genuine conviction.

In eighteen straight months of campaigning, Donald Trump’s only real statement on disability policy was his passionate defense of the discredited hypothesis that autism is caused by vaccinations. On multiple occasions on the campaign trail and during debates, Trump returned to this theme. Before and since the election, his campaign has interacted with prominent anti-vaccine advocates like Andrew Wakefield and Robert Kennedy Jr. As far as disability policy is concerned, autism anti-vaccine myths are the only thing that we know that Donald Trump has strong personal opinions regarding. And so, if Donald Trump decides to take a personal interest in his appointments to disability policy jobs, we know exactly who he’ll be listening to.

In the last several years, the “fringes” of autism advocacy have united together

This is much worse than it seems. One of the most interesting and concerning trends of the last eight years is the growing alliance between the autism anti-vaccine movement and the pro-institution developmental disability lobby. During the years of the Obama Administration, disability rights advocates scored a number of key victories around community inclusion in residential, day and employment services. Federal policy promoted bringing people with disabilities out of institutions and sheltered workshops and into integrated community living and supported employment settings. Needless to say, this sparked something of a backlash.

Throughout the 1980s and 1990s a vocal contingent of parent advocates affiliated with groups like Voice of the Retarded (VOR) and others agitated passionately against the closure of state institutions and the shifting of people with disabilities into the community. Some of these groups received substantial funding from public sector labor unions concerned that their members would lose their jobs if the state shifted residents out of institutions and into the community. However, in most cases, the families involved had excellent intentions yet were deeply misguided about the value of community living.

The research shows an overwhelming degree of support for the value of community living over institutional ones. In most cases, families who are worried or concerned about community living reconsider after their child enters the community and accesses adequate supports. For example, a comprehensive study of parental attitudes and outcomes to community inclusion around the closure of the famous Pennhurst institution in Pennsylvania saw a dramatic shift in parental opinion after their relatives entered the community. From 55% of families strongly opposing community placement prior to their relative leaving the institution, only 4% continued to do so after their relative had entered the community. The same study found that, while only 19% of families surveyed strongly agreed with community placement prior to relocation taking place, a full 66% strongly agreed with it afterwards.

The pro-institution lobby has always had a certain degree of relationship with the autism anti-vaccine movement. For example, a 1993 editorial from Bernie Rimland – founder of the Autism Research Institute and a prominent evangelist for anti-vaccine pseudoscience – warned parents to “Beware the Advo-Zealots” promoting community living for adults with developmental disabilities. But as de-institutionalization has progressed and the autism vaccine causation hypothesis has been conclusively discredited in the eyes of the public, these two “fringe” movements in disability advocacy have begun to come together.

Several years ago, VOR began collaborating closely with Age of Autism and other anti-vaccine groups, accurately recognizing that those who refuse to believe the overwhelming evidence on vaccine are unlikely to believe the equally overwhelming evidence in support of community living. The relationship is close and ongoing, with VOR and other similar parent groups successfully enlisting anti-vaccine parents in efforts to oppose shifts away from sheltered workshops, the expansion of rights for individuals living in group homes and other restrictive service-provision environments and further efforts to shift state and federal funds away from institutional care and towards community supports. As a result, there are rapidly expanding social, professional and financial relationships between anti-vaccine and pro-institution advocates. While anti-vaccine parents continue to hold a variety of views around inclusion in residential, educational, day and employment settings, there is an increasing likelihood that the leaders of the anti-vaccine movement will have considerable sympathy for pro-institution policy-making preferences.

A Trump Administration that believes that vaccines cause autism insults Autistic people and can do tremendous harm to public health. But at the end of the day, defending vaccine policy is not a core interest of disability rights advocates. There are others for that job, and compared to other areas Trump is engaged in, it is not even a top five concern.

But once we take into account the “congealing of the fringe” that’s taken place in autism and developmental disability politics over the last decade, an anti-vaccine President is a much scarier prospect. After all, the people that have Trump’s ear on disability aren’t just anti-vaccine – they also hold views that promise to reverse decades of federal policy promoting inclusion and access to the community for people with disabilities.

If Donald Trump turns to his anti-vaccine friends to fill disability policy positions within his Administration, he will be getting names prepared to reverse the most cherished victories of disability advocates around closing institutions, expanding community services, shifting people out of sheltered workshops into integrated employment and expanding choice and control people with disabilities have over their own lives.

So watch the appointments carefully, and be prepared to respond. For some positions, a Senate confirmation process exists that will afford an opportunity to investigate the views and qualifications of Trump’s nominees. I can speak from personal experience that the anti-vaccine and pro-institution wings of the autism and disability worlds are not reluctant to use this process to advocate against nominees who don’t match their views (as is their right). We would benefit from following their example.

For other positions, no Senate confirmation requirement exists – meaning that disability advocates will need to make their case to the press and the public in order to sound the alarm bells as quickly as possible. Highlighting the ways in which pro-institution political appointees may threaten to reverse hard-won Obama Administration victories on disability rights may help limit the damage – or at least educate progressive advocates from other communities about these issues. That education may matter quite a bit when the next Democratic President gets inaugurated (swiftly, and within our days).

It is my sincere hope that this speculation all proves unnecessary. If we’re fortunate, the first round of Trump disability appointees will show us their personnel policy on disability is similar to Bush and Reagan before him. But if we’re not, it will be more important than ever for the disability rights community to be ready. When it comes to community living, Donald Trump can be as dangerous for people with disabilities as he is for so many other parts of the country.

Hidden Army Tactics and the Weaknesses in Our Disability Advocacy

Earlier this month, I gave the following remarks at the 2016 Autistic Self Advocacy Network Gala. They reflect some thinking I’ve been doing of late about the need for the disability rights movement to evolve and change as we prepare to face the challenges the next four years have to offer.

I’m posting them here so people can leave their thoughts on how “Hidden Army” organizing has strengthened or weakened their disability rights advocacy over the course of their work – and how to facilitate what comes next. For those of you who are interested in seeing the original speech, captioned video is available here.

Thank you all for coming out tonight. Thank you, and welcome. That’s the keyword, isn’t it? Because what we try to do at the ASAN gala is to send a message of welcome to all of us. You’re all a part of that. Whether you rock or flap, make noises or vocalizations, don’t make eye contact – I dare say most people here, quite a few of us at least, don’t make eye contact – we want you to know that you are welcome here. You are a part of our community.

I want to start, as is appropriate to do at an Annual Gala, by thanking our generous donors and supporters who have joined us here tonight. Your support makes what we do possible – and I’m pleased to report that this year, on our 10th anniversary, we have had our most successful gala yet, raising over $80,000 to support ASAN’s operations in 2017. I’d like to thank the Special Hope Foundation, Anthem, Centene and all of our other sponsors for their continued investment in ASAN’s work.

Ten years is a long time in the life of an organization. When Scott Robertson and I founded ASAN in 2006, we began with nothing but a simple assertion that all was not right in the world – and that we Autistic people needed to have our voices heard in order to fix it. All is still not right with the world, but the last decade has seen considerable progress.

Tonight, as I look out on two hundred of our strongest supporters, I have to marvel at how we’ve grown from a group of awkward pimply teenagers to one of the premier national disability rights organizations in Washington. It just goes to show what can be accomplished when you lack the good common sense to know that what’s impossible.

And yet, despite this landmark milestone and celebration, I have to tell you: I’ve had a rough week.

Maybe some of you have too.

For the last ten years, we’ve worked closely with our friends in government to advance the full inclusion of people with disabilities throughout society. For the last ten years, we’ve made considerable progress, clearing away the detritus of the past in order to form a more inclusive and welcoming future for all people.

As we begin the next decade of ASAN’s existence, I fear that – for a time – our work will have to change. At least for the next few years to come, we may find ourselves on defense, defending what we’ve achieved, more often than we’ll be breaking new ground. That’s a frightening thought.

I’m reminded of an old story – some of you know it, it happens to be one of my favorites – about Pat Wright and Senator Ted Kennedy, two of the 20th century’s great warriors for disability rights, sitting together at the signing ceremony for the Americans with Disabilities Act in 1990.

After years of advocacy, pushing and prodding and grueling activism, the world’s first comprehensive disability civil rights law was about to be signed. As President Bush prepared to put pen to paper, Senator Kennedy leaned over and whispers to Pat, “Uhhh, Pat. What if he reads it first?”

And of course, she responded with, “Don’t worry, he won’t.”

And there’s an extent to which, as humorous as this story is, it reflects a critical weakness in our disability rights laws. The general public doesn’t really know what’s in them. Often times, even the elected officials that vote for them and sign them don’t really know what’s in them.

There’s a small community of disability rights experts and leaders, who truly know disability policy, and a slightly larger group of elected officials, staff and persons of influence who have some connection to the disability community and are thus ready to follow the lead of those who know it well.

It’s called the “Hidden Army” approach, and I know some of you in this room pioneered it beautifully. It brought us the ADA, the IDEA and countless other disability rights victories. We didn’t have to go to the public, not really. We didn’t have to put our issues in the arena of political debate. Everything could remain safely bipartisan, largely behind closed doors. Our legislative champions would follow our lead because “they were doing good for disabled people”. They didn’t really need to know the details.

There are a lot of strengths to that tactic. It meant we could move forward policy despite the fact that we can’t mobilize the tens or hundreds of thousands of supporters other movements can bring out to a march or a protest.

It meant we were not held back by what otherwise might be crushing institutional weaknesses, like the lack of a meaningful disability media or a disability-focused electoral politics operation. It meant we could keep tinkering with the details of disability policy in quiet conversations rather than grand marches, largely secure in the knowledge that when our champions acted, their personal connection to the cause would spur them to do so with our advice in mind.

There is a problem, however, with this time tested strategy. Because of our reliance on “Hidden Army” tactics, the general public has never seen disability rights as a struggle, never seen our victories as hard-won, or our losses as reflecting anything other than ignorance, rather than malice.

We have never really had to go to the public on the issues that matter most to us. Disability is apolitical in the public mind, and so when the day comes when those in power do not have our best interests at heart, it becomes harder to resist the roll back of all we’ve accomplished.

I would submit that the next four years challenge us to make a change in the kind of advocacy we engage in. First, there is still definitely a role for the “hidden army” approach. We must call on our friends and would-be champions in Congress to stand up for the programs that sustain our people.

Let me say this simply and clearly: legislators who wish to slash hundreds of billions of dollars from the services we depend on will win no points with us by a symbolic awareness resolution or a momentary bump in research funding. There is no universe where you can both vote for block granting Medicaid and call yourself a friend to the disability rights community. You have to choose.

But we also have to move to new ways of organizing. We have to talk to the public in a way we haven’t before, in a way we’ve been reluctant to. Because, you know, it’s scary to try and build a mass movement.

We’ve never been great at that! I’m tremendously proud of the strength and influence that ASAN has built over the last decade – but I also know – as do we all – that every disability rights organization continues to struggle to get our message out to the public.

It’s scary to speak to the American people – and realize they may just not care what we have to say. That perhaps for all the progress and all the advocacy, we have yet to break the barriers in the hearts and minds of our fellow citizens.

It’s scary to admit that maybe we’ve been lying to ourselves about the present power of our grassroots, the strength of our movement at this moment and time. That for decades now, we have been pleading and cajoling those more powerful than we are to support our moral case rather than standing on the strength of our own political operation.

In Washington, the last thing you ever want to do is to admit you’re not as powerful as you pretend to be.

But there is also a unique strength in that acknowledgement. The moment we stop lying to ourselves is the moment we can set out to actually build the power our community has the potential to wield.

The majority of disabled people and families have yet to be activated politically. The challenges of the next four years will be a tremendous and vital organizing opportunity.

We have a chance now, in this difficult time, to become stronger than we are today. Through real investments in grassroots organizing, through alliances with other communities at risk, through a willingness to court controversy and to challenge those who call themselves champions to stand with us when it counts, we can build a stronger disability rights movement.

It will be tough. It means a lot of hard work – and a lot fewer invitations to the White House.

But it also means a stronger disability movement, that doesn’t depend on the right official having a personal connection. That enjoys a broad based community of activists, familiar with the details of the programs that sustain our lives and our rights. It means having the chance to grow as a movement – and be stronger when we defend what is ours and make further demands for a more inclusive world.

Starting in January, Julia Bascom will be taking over in my role. I know ASAN will be in excellent hands for our next decade under her leadership. As a result, this is my last speech as ASAN’s President. While it is only the beginning of what I hope will be a long lifetime of service to the disability rights movement, these are my last public remarks to the organization I helped to found ten years ago and to which I have had the honor of dedicating the entirety of my adult life to date. So since you pretty much have to listen to me talk, I hope you’ll forgive me if I draw on my religious tradition to talk about the moment we find ourselves in.

There is a Jewish folk tale, with roots in the Talmud, about the Lamed Vavniks, the thirty-six righteous people on whose lives the fate of the world rests. The world continues thanks to the righteousness of this small group, and should any of them die without a successor, the world would end.

They will never announce their role and may not themselves be aware of their importance. The legend tells us that anyone who claims to be a lamed vavnik is most definitively not, since they are by nature humble and not prone to self-aggrandizement. But for the sake of these thirty-six, no matter how much humanity falls short of our ideals, God will preserve life on earth.

I dare say that none of us in this room can lay claim to the honor of being one of the thirty-six most righteous people on the planet. I can think of at least a half dozen reasons off the top of my head why I’m out of the running. I don’t know about you! We are all flawed and imperfect people, struggling to do the best we can under difficult circumstances.

But for the sake of the world, we have to live our lives as if we are shouldering that awesome responsibility. That if we should falter and fail, should we fall without making provisions for succession, the world itself will come collapsing down around us.

And in truth, while life on earth will probably go on if we fail in our obligations, the life of the disability rights movement – and all the millions of lives that depend on its success or failure – may not survive without us.

And in turn, should we succeed in living up to that solemn promise and responsibility, we may yet succeed in the great mission of disability rights advocacy, to empower the next generation to live lives without fear, without want and with the sure and everlasting knowledge that they are welcome and belong in this world. Our role is to build a strong foundation, so that the next generation may take for granted the simple and obvious fact of their humanity.

It is our obligation to keep aloft the flame left to us by Justin Dart, by Ed Roberts, by Eunice Kennedy Shriver, by Judy Heumann, Jim Sinclair, Burton Blatt and many others who paved a trail to the progress we enjoy today. We must preserve their legacy – and work to advance it, especially in times of darkness and difficulty.

Today, and over the next several years, we will not fail in that charge. In the words of the late Senator Kennedy, who stood on the White House lawn more aware of the ADA’s promise than even the President who would sign it, “the work goes on, the cause endures, the hope still lives and the dream shall never die.”

Thank you. Have a lovely evening and God Bless America.

Labor and Disability Rights: A Chicken and Egg Problem

Last week, the Department of Labor issued a new rule raising the salary threshold below which workers are entitled to overtime pay. This is a pretty big deal – prior to now, only those making below $23,660, about seven percent of the workforce, were eligible for overtime. Thanks to the Department’s new regulation, as of December 1st workers making below $47,476 will now be eligible for time and a half pay when they work more than 40 hours a week.

More prominent commentators have written about the potential impacts of the rule far better than I, but on balance, it seems like a step forward for working Americans, whose wage growth has stagnated for decades. The rule has a particular disability element, however. The Department of Labor coupled the rule with a time-limited non-enforcement policy applying to most residential based providers of Intellectual and Developmental Disability (I/DD) services. Essentially, for the majority of agencies providing services to people with I/DD, the Department of Labor will decline to enforce this new overtime threshold for the next three years.

The non-enforcement policy (which, full disclosure, ASAN joined other groups in advocating for), raises interesting questions. Why are Medicaid-funded employers different from other ones? What rationale justifies different rules applying to them, albeit only temporarily? Others have written on the hypocrisy of progressive organizations seeking to maintain unfair labor practices inconsistent with their stated principles. Is this just another example of a right for me but not for thee?

On balance, I think not. Agencies providing community services to people with disabilities are uniquely situated among employers, in that virtually all of the funding they receive comes from state Medicaid programs. Unlike private business, for whom added labor costs can be covered by reducing profits, or donation-supported non-profits, who can cultivate new donors, most disability service-providers rely exclusively on Medicaid reimbursements set by state government. Where the state chooses to raise rates in line with new labor regulations, this isn’t a problem. Where it does not, however, small and medium sized providers are forced to scale back services to the people they serve in order to stick around.

This isn’t the first time that this issue has come up. In 2011, the Department of Labor proposed a new regulation drastically narrowing an exemption to the Fair Labor Standards Act known as the “Companionship Exemption”, allowing home care workers to be paid without regard to overtime and minimum wage law. Under the new rules, promulgated in final form in 2013 and having recently come into effect in late 2015 after an extended court battle, the Companionship Exemption no longer applied to the vast majority of workers providing services to seniors and people with disabilities in community-based Medicaid programs. For the first time, federal labor law would apply fully to this population.

While the application of minimum wage requirements was not a significant burden (most states already required this in state law), requiring time-and-a-half for overtime was. State Medicaid rates to agencies (and individual budgets for people with disabilities who self-direct their own services) had never taken into account the need for overtime costs. Furthermore, given the low rate of pay most support workers receive and the difficulty in finding a good interpersonal “match” between worker and client, it has long been commonplace for workers to work well in excess of forty hours a week.

Without access to new Medicaid funds, agencies and self-directing people with disabilities would be unable to cover the cost of overtime, raising the potential of cutbacks in worker hours and/or services received. Such cutbacks could lead to people with disabilities forced into nursing homes and institutions as a result. Disability rights advocates (myself included) were justly concerned, and many fought hard against the new rule. Considerable controversy ensued.

In so far as the Companionship Exemption regulation planned for the likely impact on providers supported by state Medicaid programs, it did so in the expectation that it would force a crisis, triggering necessary state reforms. This way of thinking is simple: if provider agencies were forced to pay overtime on hours worked above forty hours a week, they will successfully pressure their legislators to allocate funds to cover their added costs. Under this formula, new labor law and the additional Medicaid funding needed to pay for it are the proverbial “chicken and the egg”. One has to come first – and proponents of the Companionship Exemption rule hoped to force the new funding by requiring that overtime be paid. And in some cases, this is exactly what happened. Unfortunately, not every state responds the same way to a crisis.

Some states have simply declined to allocate new funds to assist agencies to comply with the rule, working under the assumption that agencies will act on their own to prohibit their workers from working above the 40-hour threshold. Many of these states have directly prohibited worker overtime in self-directed programs, where people with disabilities manage workers without an agency. These worker hours caps cause serious problems for people with disabilities. The new caps threaten long standing support relationships and force many – particularly those in rural areas or with specific cultural and linguistic competency needs – to struggle to find new providers (a problem MySupport, a new tech platform some colleagues and I developed, is designed to help solve, I should add). Workers are also worse off, facing a cut-back in hours and a reduction in income as a result.

And because of a long standing labor law doctrine called “joint employment”, which stipulates that entities that play a significant role in designating working conditions or wages may also be considered employers even if they are not the entity signing paychecks, a number of states realized they had to limit the number of hours a worker could work for any Medicaid-funded recipient of services within a self-directed program. Not only could workers not work more than forty hours a week for a single client under these rules – they can’t work more than forty hours a week for any client funded by the Medicaid program, since the state is considered a “joint employer” with the person receiving services. Since collective bargaining agreements and state-designated wage rates can tip the balance into a state becoming a joint employer, this is causing some states to consider rolling back such measures, leaving labor rights worse off in these jurisdictions.

What lesson should we draw from this? Should Medicaid providers be permanently exempt from overtime obligations and other aspects of labor law? No – such a policy would not only be unfair to workers, it would be terrible for people with disabilities. Already, publicly funded community based services struggle to attract an adequate workforce, with sky-high turnover rates and workers living in almost as much poverty as the people they support.

It is no accident that the Department’s non-enforcement policy represents a delay rather than an exemption of the Department’s enforcement of the new overtime rule. The intent behind this measure is to allow state legislatures sufficient time to allocate new funding, allowing the implementation of these labor protections to be put in place in a responsible way, without harming those receiving services.

 

In fact, one can argue that the Department’s non-enforcement policy really doesn’t go far enough. After all, the Fair Labor Standards Act is not enforced solely through government action. Private citizens can bring lawsuits for unpaid wages any time they want, and the Department’s non-enforcement of the new rules does not change their applicability to I/DD service-providers. And, of course, eventually, the Department will enforce its own rules, and there is no guarantee states will do the right thing and raise rates before then.

Since the fight over the Companionship Exemption rule (and as efforts to raise state and federal minimum wage laws proceed), disability rights advocates have been discussing the need to tie Medicaid rates to new labor laws. Some more progressive states have passed state statutes doing so already. But this is a national problem, and it requires a national solution.

At the federal level, there are a variety of avenues that could accomplish this. The most reliable would be a change in law. Congress certainly has the authority to require states to adjust Medicaid rates in line with minimum wage and other labor law modifications, and perhaps offering an enhanced Medicaid match rate for labor law changes originating at the federal level (like an increase in the national minimum wage). Should such a measure prove politically difficult, it is possible that more limited progress could be secured through administrative action from the Departments of Justice and Health and Human Services.

After the promulgation of the Companionship Exemption rule, DOJ and the Health and Human Services Office of Civil Rights issued a Dear Colleague letter to the field instructing states that they may need to provide for reasonable modifications to caps on worker hours in order to comply with their obligations under the ADA and the Supreme Court’s 1999 Olmstead v. L.C. decision. The letter states that states must provide for, “reasonable modifications to policies capping overtime and travel time for home care workers, including exceptions to these caps when individuals with disabilities otherwise would be placed at serious risk of institutionalization…[but] whether a reasonable modification is needed and what the modification should be depends on the specific factual circumstances.”

A series of enforcement actions to better articulate the parameters under which states must offer an exceptions policy (and the circumstances under which it would be triggered) would go a long way to making this guidance more meaningful to the lives of people with disabilities. Still, exceptions to worker hours caps won’t fix the bulk of the harm caused by the overtime rule. What’s needed are changes to state and federal law to require Medicaid rates to rise automatically when labor law increases provider costs.

Such a policy would address the conflict between labor and disability rights advocates. We should be able to find a way to protect both of our interests. Labor must realize that forcing a crisis in disability support is an irresponsible and dangerous way to secure new funding – and disability advocates should join forces with unions to build a viable political coalition for planned and responsible increases in worker compensation.

Workers providing disability services deserve the full protections of labor law and people with disabilities deserve adequate access to community support from workers they trust. It’s past time that we put in place policies that protect the rights of both workers and people with disabilities.

Donald Trump Wants the Disability Vote – Don’t Give it to Him

Donald Trump Wants the Disability Vote – Don’t Give it to Him

Late last night, Senator Ted Cruz ended his campaign for the Presidency. While Cruz himself was by no means suited to be President, his departure from the race makes something that would have been unbelievable a year ago a certainty: Donald J. Trump will become the Republican nominee for President of the United States.

Even the once formidable Republican Establishment is rallying around Trump. Shortly after the results of the Indiana primary were announced, the chair of the Republican National Committee, Reince Priebus, tweeted his support and called for the party to unite behind a man who has built his campaign on the rawest kind of hatred, prejudice and xenophobia.  Ari Fleischer, George W. Bush’s Press Secretary, tweeted his support for Trump only two months after condemning his refusal to denounce David Duke and the Klu Klux Klan.

How did we get here? Many are asking that question, and better minds than mine have put forward a wide array of theories. But there’ll be plenty of time later on to try and figure out how a vulgar reality television star who built his candidacy on the most outrageous sort of lies and authoritarianism became a major party nominee for President. Now, our focus must shift to ensuring that he does not win the general election.

Because make no mistake: Trump is dangerous, and while the smart money remains that the Republican party that was foolish enough to select him will lose by historic margins in November, we underestimate him at our peril. He is cunning, shameless and extraordinarily talented at becoming whatever it takes to win. People underestimating Donald Trump is what got him this far. Those of us who see what a disaster Trump would be for the United States of America and the world need to not make that mistake.

At times like this, it’s incumbent upon every reasonable person to do their part. We all have to speak out, to whatever small section of the electorate listens to us, about the danger that Mr. Trump poses to the American republic. Others will speak about how Trump threatens racial and religious minorities, democratic norms, journalistic freedom, basic standards of human rights, long-standing American commitments to our allies abroad and much, much else. As a lifelong disability rights advocate, my role is to speak – solely in the capacity of a concerned citizen – as to how Trump threatens the disability community.

It’s a more important task than many people realize, in part because people with disabilities have not been the main target of Trump’s demagoguery. Despite a reprehensible episode last year where Trump engaged in a cartoonish mockery of a journalist’s physical disability, the bulk of Trump’s attention has not been on the disability community. And this is exactly the danger. To those of us who have been watching closely, there is significant evidence that Trump is likely to make a play for the disability vote before the general election is over.

Already, his campaign has tried to reach out to parents of autistic children who buy into the long discredited myth that autism is caused by vaccinations. As far back as the second Republican primary debate, Trump linked autism to vaccines, going on to spout the long discredited idea that “autism has become an epidemic…Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.” Never mind the overwhelming scientific consensus against vaccine causation of autism, or the significant evidence that shows that autism has always existed in the general population at comparable rates to the modern day. Never mind the despicable premise that subjecting children to the risk of death from fatal illness is preferable to even a fake risk of having an autistic child. Trump saw an electoral opportunity, and he took it.

With some results, it must be said. Just this past month, Bob Wright, the founder of Autism Speaks, tweeted his enthusiastic support for Trump. Since then, former Autism Speaks executive and failed Republican congressional candidate Elizabeth Emken joined the Trump campaign as a spokesperson, appearing on national television to defend Trump’s comments and claim the vaccine issue was still an open question. Trump has become the enthusiastic candidate of anti-vax parents, receiving endorsement from several blogs associated with the anti-vaccine wing of the autism parent movement.

Trump has also made symbolic gestures towards the veteran community, which includes a significant number of people with disabilities. While these have generally been rejected by the more respectable veterans organizations, he’s doing so because he sees an opportunity and a need. Having nearly won the Republican nomination by showcasing his willingness to trample upon those sectors of society that are weaker than he is, he knows that in order to win a general election he will need a fig leaf. An image as a candidate that stands up for disabled children and wounded warriors is a useful one to project. Every credit he gets in that column will help offset his reputation as a bully displaying his machismo by attacking immigrants, minorities and women. It’s important to deny him that opportunity.

The truth is simple: Donald Trump has an abysmal set of policy positions when it comes to disability. Nowhere is this more clear than in his own campaign website’s policy statement on health care. Here are four areas where even Trump’s meager written statements on policy issues threaten to make things worse for people with disabilities:

Donald Trump will Bring Back Health Insurers Discriminating Against People with Disabilities

“Completely repeal Obamacare. Our elected representatives must eliminate the individual mandate. No person should be required to buy insurance unless he or she wants to.”

When the Americans with Disabilities Act passed in 1990, people with disabilities were protected from most forms of discrimination – with one notable exception: insurance markets. From 1990 to 2014, when the Affordable Care Act came into full implementation, disabled Americans could be denied access to insurance coverage or charged exorbitant rates above the non-disabled population in order to access health insurance. The ACA changed that, banning pre-existing condition discrimination and requiring insurers to serve all who sought their services.

Early in the Republican primary, Trump claimed to want to protect people with pre-existing conditions from continued discrimination. But his health plan includes no such provision to do so – and promises to completely repeal the Affordable Care Act. What’s worse is Trump’s promise to eliminate the ACA’s mandate that individuals buy health insurance. While unpopular, the individual mandate is the only realistic way to make a ban on insurers discriminating against people with disabilities and other pre-existing conditions viable. The House Republican leadership knows this – which is why Speaker of the House Paul Ryan has recently called for bringing back pre-existing condition discrimination in the Republican alternative to the Affordable Care Act.

What the individual mandate – and the use of pre-existing condition discrimination before it – is designed to do is simple: ensure that people don’t wait till they’re already sick to buy insurance. Without it, the health insurance model doesn’t work. Insurance depends on large numbers of healthy, non-disabled people paying premiums against the risk of future illness. By planning to repeal the ACA, Trump shows that he will not keep in place President Obama’s policies protecting people with disabilities from discrimination in the insurance market. By promising to eliminate the individual mandate, Trump proves that he will provide no new such policy himself.

Donald Trump Proposes a Race to the Bottom in Commercial Insurance Benefits

“Modify existing law that inhibits the sale of health insurance across state lines. As long as the plan purchased complies with state requirements, any vendor ought to be able to offer insurance in any state. By allowing full competition in this market, insurance costs will go down and consumer satisfaction will go up.”

Allowing the sale of insurance across state lines is a pleasant-sounding policy idea that’s been rattling around conservative healthcare talking points for years now. It seems superficially positive – after all, increasing competition between insurance providers should serve to reduce prices. Unfortunately, the reality of this proposal would be to set off a race to the bottom for insurers to offer the least comprehensive benefit package possible.

Conservative commentators support the sale of insurance across states lines mainly because it would effectively render impossible meaningful state regulation over insurer benefit packages. State laws requiring insurers to cover particular benefits, like occupational therapy, pregnancy coverage, assistive technology or other health care services or devices would be rendered effectively meaningless by this proposal.

States which maintained these laws would only have their insurance purchased by those who required the benefit – leading to financial insolvency on the part of state health plans. (Once again, the fundamental premise of insurance requires some people to purchase plans that include benefits they don’t yet need and may never need.) Instead, the last plans standing would be those based out of states that allowed for cut-rate, minimal coverage, insufficient to meet the needs of children or adults with disabilities.

Such an approach would force millions of adults with disabilities and families with children with disabilities to limit their work effort in order to qualify for Medicaid or the Children’s Health Insurance Program. Ironically, one of the only things that could prevent such a negative trend is…the Affordable Care Act, which allows the federal government to set basic standards for what insurers must cover that apply nationally.

Donald Trump Promises to Devastate the Medicaid Program which Funds Most Disability Services

“Block-grant Medicaid to the states. Nearly every state already offers benefits beyond what is required in the current Medicaid structure. The state governments know their people best and can manage the administration of Medicaid far better without federal overhead. States will have the incentives to seek out and eliminate fraud, waste and abuse to preserve our precious resources.”

Once again, block-granting Medicaid to the states is a longstanding right-wing policy proposal. Currently, Medicaid works as a partnership between the state and the federal government. For every dollar that a state Medicaid program is willing to commit, the federal government will match it with a dollar of their own (and in most cases much more than a dollar, as the federal match rate is calculated based on the level of poverty within the state – poor states get more federal money). That means that as a state’s commitment increases, so does the federal governments.

This match is critical to ensuring that states are supported to do things like end waiting lists, expand access to critical services to seniors and people with disabilities and continue to maintain support for Medicaid during times of economic downturn. It also means that the federal government can offer incentives for states to change behavior in positive ways – for example, the Money Follows the Person program has helped tens of thousands of people with disabilities escape institutions and nursing homes by offering to pay a 100% match for the cost of their services for their first year in the community.

Unfortunately, Trump’s proposal to block-grant Medicaid would drastically change the nature of the Medicaid program. Instead of states receiving federal funds that match their own commitment, a block grant would lead to states receiving a preset amount of federal funding with no strings attached and no commitment to match additional state investments. This would mean that states would have relatively little incentive to act to cut waiting lists, expand services or maintain their programs when the economy and the state budget was suffering.

According to the Center on Budget and Policy Priorities, the block granting proposals included in the House Republican budget would cut Medicaid funding by $1 trillion over the next ten years. By 2026, funding would be at only two-thirds the level anticipated under existing law. As Medicaid represents the primary funder of aging and disability services in the United States, this is yet another example of the devastating impact Donald Trump’s election would have on disability policy.

Donald Trump Wants to Eliminate Critical Privacy Rights for People with Mental Illness

“Finally, we need to reform our mental health programs and institutions in this country. Families, without the ability to get the information needed to help those who are ailing, are too often not given the tools to help their loved ones. There are promising reforms being developed in Congress that should receive bi-partisan support.”

Over the last few years, as gun violence has become more prominent on the national agenda, many in the Republican party have looked for a scapegoat that can move attention away from gun control measures. They’ve found that in people with mental illness. The “promising reforms being developed in Congress” that Trump is referring to is the Murphy bill, H.R. 2646, the Helping Families in Mental Health Crisis Act.

This legislation would significantly limit the HIPAA privacy rights of people with psychiatric disabilities and would incentivize states to expand forced treatment. The bill also includes provisions that would expand institutionalization of people with psychiatric disabilities and make it harder for the federally-funded Protection and Advocacy rights protection program to provide them with legal representation to secure their civil rights. It’s likely that at some point in the general election, Trump will use this as a talking point to show his “support” for helping people with mental illness. It’s important that we not be tricked when he does.

There’s more to be written about this, to be sure. One can only imagine what the Donald would do to Social Security Disability Insurance or the cavalier attitude with which he would treat the educational rights of children with disabilities. But it’s important to start talking about this now, because the longer the race goes on, the longer Trump and his advisors will try and “evolve” him into a candidate that can win the general election. No doubt promises to be a champion for people with disabilities will play a part in that. When those promises come, be ready and be skeptical. Trump will want to buy the right to trample on the rest of America by offering a mess of pottage for the disability community. If we are so foolish as to accept, he will trample on us too.

My Favorite Part of the Purim Story

Last week was Purim, a Jewish holiday that celebrates the saving of the Jewish people from the genocidal Haman in the ancient Persian empire. Purim happens to be one of my favorite holidays, not least because it involves dressing up in funny costumes, performing plays that parody current events and whatever your favorite alcoholic beverage of choice is. Still, without a doubt, my favorite part of the Purim holiday is the reading of Megillat Esther (the scroll of Esther), the story of how Esther and Mordechai saved the Jewish people from Haman’s plot to wipe us out.

The story is well known to most Jews, and very enjoyable in both the hearing and the telling (though some tellings are more creative than others). My favorite part is about halfway through, when the King can’t sleep, so has one of his servants begin reading to him from the book of records (presumably with the hope that this would conk him right out – Ahasuerus is very obviously not a policy wonk). The records reflect that some years previously, Mordechai had informed the Palace of a plot by two of the King’s chamberlains to murder the King. This being behavior that royalty likes to reward (in the quite understandable hope to remain thoroughly un-murdered), the King asks, “What Honour and dignity hath been done to Mordecai for this?” and is quite shocked to discover that the answer is precisely bupkis.

Not one to let insomnia hold him back from affairs of state, the King summons Haman into his room. Haman has been loitering in the courtyard preparing to ask the King for permission to hang Mordechai, for the unpardonable crime of not bowing down to the man who would most certainly Make Shushan Great Again. This is after he has already convinced the King at the beginning of the tale to endorse a decree that marked the Jewish residents of his empire for genocide on a date he appoints. Before he can make the request to execute Mordechai in particular, however, the King queries him, “What shall be done unto the man whom the king delighteth to honour?”

Haman, being the down to earth guy that he is, thinks to himself, “Whom would the king delight to honour besides myself?” and describes his own perfect day out on the town. “For the Man Whom the king Delighteth to Honour, let royal apparel be Brought Which the king Useth to wear, and the horse That the king Rideth upon, and on Whose head a crown royal is set and let the apparel and the horse be delivered to the hand of one of the king’s most noble princes, That They may array the man Therewith Whom the king Delighteth to Honour, and cause Him to ride on horseback through the street of the city, and proclaim before him: Thus shall it be done to the man whom the king delighteth to honour!”

The King is overjoyed with Haman’s response, and immediately cries out, “Make haste, and take the apparel and the horse, as thou hast said, and do even so to Mordecai the Jew!” What followed was most definitively not Haman’s best day, as he led Mordechai through the streets, delivering to the pious and unbowed Mordechai his own lusted for ego trip.

Why do I love this story? Because it’s funny, certainly. And also because it involves an unprincipled power-seeker receiving an ironic comeuppance. Speaking as someone who works in a city filled with unprincipled power-seekers, that’s quite a draw. But there’s another reason I love it. You see, the truth is that this part of the story is unnecessary to the narrative. It’s an interlude in the larger Purim tale, which is much more about Queen Esther’s courage to use the privilege and power of her position to save her people, even at great personal risk to her life. You could tell that whole story without this amusing tale of Haman’s humiliation. Yet the Megillah includes it, and I have a theory as to why.

Megillat Esther is somewhat unique among Jewish holiday narratives in that it lacks any form of direct divine intervention. Passover comes with the Ten Plagues and the parting of the Red Sea; Shavout has the giving of the Torah at Mount Sinai. Even Hannukah, which is primarily about a secular military victory and, like Purim, is not biblical in origin, has the ‘miracle’ of the oil which lasted for eight days when only enough for one was left. Purim has no such miracles, no direct divine intervention. When the Jewish people are finally saved thanks to Esther denouncing Haman and enlisting the support of the rather flighty Ahasuerus in enabling the Jews to fight for their lives, there is no violation of the laws of nature to bring about this victory. It is a small win, and one entirely attributable to human efforts.

So also is Haman’s humiliation and Mordechai’s unwitting elevation, even if it is a sidenote in the more important story of Esther’s bravery. Indeed, this part of the story seems to be the result of neither human will or divine intervention. Instead, it’s just pure dumb luck. Events transpire in just the right way, from the King’s insomnia to Haman’s loitering in the courtyard at just the right time, to enable this cherry on the sundae of the Jews’ deliverance.

Though it is less impressive than the parting of the sea or raining down mana from above, this is much more like how we look for G-d in the modern era. The Talmud teaches us that it is forbidden to rely on miracles – that we must live our lives with the expectation that it will be our choices and our efforts that will lead to our success or failure. To sit around and wait for G-d to elevate you – or to be foolhardy with ones life in the confidence that a miracle will preserve you – is strictly prohibited. Joshua could count on G-d to halt the sun in the sky to win a battle and Moses could use the tools that G-d gave him as proof of his divine mandate. We just have to do our very bests, hoping for an outcome that will likely be indistinguishable from a lucky break.

But sometimes, despite not lounging about in expectation, we succeed against truly shocking odds. Sometimes this happens through the success of a dangerous gambit we only took because our moral obligations left us no choice, like Queen Esther risking it all to approach the King and ask for the salvation of the Jewish people. Sometimes it comes through no particular plan of ours, when a good deed from long ago comes back to reward us when we least expect it, as it did for Mordechai. In these moments, I feel the divine presence. I don’t mean it in a proselytizing sense – we Jews don’t do that, and everyone should feel free to interpret the world in the way that helps them manage life’s challenges best for them. But for me, there is something profoundly meaningful in seeing G-d when I find success despite long odds – especially when I know that any success is an interlude between past and future failures. The story of Esther serves as a bridge between the biblical age of miracles and the world we have now. In the world we live in, stuck relying on our own efforts and dumb luck to save us and those we care about, it helps a lot to feel G-d at ones back when we finally eke out a win.

Do Not Separate Yourself From the Community

Jewish Day Schools are failing youth with disabilities. It’s time to focus on inclusion – and speak out against those who assume it’s not possible

Last month, the Jewish community noted Jewish Disability Awareness and Inclusion Month (JDAIM), an annual opportunity each February for Jewish communal institutions to recommit themselves to working for the full inclusion of Jews with disabilities in all aspects of our community. Much work is needed on this issue, and recent events have convinced me that not everyone in our local Jewish community is on board with the cause.

To mark the start of the month, Rabbi Mitchel Malkus, Headmaster of DC’s prestigious Charles E Smith Jewish Day School, published a blog post on the school web page. The piece briefly noted JDAIM, before quickly shifting to making the case that parents must adjust their expectations, offering a parable of a parent who “honestly felt the school had tried too hard to keep her daughter enrolled…[and] upon reflection a few years later…realized it would have been a better choice to seek a more specialized school with specific resources.”

The Rabbi then goes on to articulate different kinds of schools that might specialize in students he is reluctant to welcome, noting that “one school may focus on students with dyslexia, ADHD, and other language-based learning differences, [while]…another school serves students with obsessive-compulsive disorder, sensory processing disorder, autism, or Asperger syndrome.” The message is clear – such students belong elsewhere, not in the hallowed halls of Rabbi Malkus’ august institution.

Of course, not every student will succeed in every school. But such lack of capacity is far from a law of physics – it is a deliberate choice, made by educational institutions when they choose to allocate funds in a way that de-prioritizes meeting the needs of disabled learners. Secular public schools face an obligation to serve students with dyslexia, ADHD, obsessive compulsive disorder, autism and other disabilities Rabbi Malkus cites in the general education classroom. They frequently do so with far lower per pupil funding than schools like JDS charge in tuition. Is the implication here that secular institutions are inherently more capable than Jewish ones in providing a high quality education? I do not believe this to be the case – instead, it’s a matter of setting priorities.

Commitment to inclusion should not be dismissed as a matter of naive ideology. We should realize the consequences of telling Jewish students with disabilities that they do not belong. Often, it means a break in Jewish continuity, with youth and families determining that if Jewish communal life has no place for them, it will not have a hold on their hearts. At best, it means a lifelong sense of looking at the Jewish community from an arms length perspective. At worst, it may mean increased vulnerability to abuse and a sub-standard education, given the evidence showing that students with all kinds of disabilities have consistently worse outcomes in segregated environments. Kicking people out of our schools doesn’t make it easier for them to have their learning needs met – it simply makes meeting those needs someone else’s problem.

It is an astonishing marker of attitudinal barriers in Jewish education that this is the message on disability that Rabbi Malkus chose to start the conversation with. For non-disabled students, one may typically assume a welcoming attitude, and approach challenges with the expectation that they can be surmounted until it becomes clear that they cannot. Rabbi Malkus’ message seems to take the opposite approach, assuming that the most relevant message his community should hear around disability inclusion is to accustom themselves to the idea that JDS may not be a place for disabled Jewish youth.

As a disability rights professional and a disabled Jew who left a Jewish Day school upon receiving one of the diagnoses Rabbi Malkus cites, I find this indicative of a broader trend in which Jewish day schools fail to see the education of students with disabilities – particularly those with significant cognitive or behavioral challenges – as within their purview.

This isn’t a new problem – in the secular world, we have a wealth of data on what happens when administrators “counsel out” families with children with disabilities from their schools from the charter school movement, whose leaders make similar statements.

The research literature on including students with disabilities in the general education classroom shows that one of the single biggest predictive factors is administrator and teacher attitudes, regardless of the severity of the child’s disability. We also know from data in the public school system that there are vast disparities between district to district and state to state as to the rate of inclusion of students with disabilities – disparities that indicate that it is political will, not level of impairment, that drive whether or not a child will be included.

No such data exists for Jewish Day Schools because we fail to collect it, though we do know that Jews with disabilities are vastly underrepresented in other youth-focused communal activities, such as summer camp. Local funders and Federation leaders should consider requiring the collection of self-reported data on disability status in local schools, camps and other programs, and making it available in a properly anonymized format in order to ensure that community members can see where different programs stand on inclusion.

Furthermore, though the Americans with Disabilities Act’s religious exemption shamefully means that schools like Charles E Smith are not bound to the same legal obligation that secular institutions with comparable resources and missions are, Federation and other philanthropic organizations should require Jewish Day Schools and other programming to commit to comparable non-discrimination protections. An independent, clearly marked process of recourse to address disputes should also be established, to make up for the courts being blocked off when the school, camp or program discriminating is religious in nature.

Rabbi Malkus’s remarks are only one sign of a much bigger problem, and work is needed to send a clear message that Jewish Day Schools are willing to welcome and work for the inclusion of all Jewish children. As the Rabbi may recall from his own rabbinic education, R. Hillel wrote in Pirkei Avot, Al Tifrosh Min Hatzibur (“Do Not Separate Yourself From the Community”). We must recall that Jews with disabilities are part of that community – and when we are relegated to separate, segregated settings, our leadership fails to live up to Jewish values.

Disability Wasn’t Mentioned in the State of the Union. Should We Care?

Disability Wasn’t Mentioned in the State of the Union. Should We Care?

This past Tuesday, President Obama gave his last State of the Union address. As a policy wonk and a card carrying member of the politics fandom, I enjoyed it tremendously. As a disability rights advocate, I was underwhelmed. Except for a heartfelt section calling for more medical research on curing cancer, the President failed to bring up people with disabilities in his remarks. This is not altogether unusual. While President Obama will have many disability rights achievements as part of his legacy when he leaves office next year, he has rarely acknowledged the disability community in his remarks to the nation.

I have complicated feelings about that. After all, it isn’t as if President Obama has not done a tremendous amount for the disability community. The President’s Affordable Care Act is perhaps the single most important piece of disability rights legislation since the Americans with Disabilities Act (ADA) itself, though most people don’t see it as such. And yet, the benefits of the ACA are designed first and foremost for the general public, and it has been sold in those terms. Very few people think of Obamacare as a gift to the disabled. Perhaps that is as it should be. But the minimal attention paid to the disability community in President Obama’s public addresses does leave one with the impression that the White House does not view disabled Americans as a group worth pandering to.

It is not as if Presidents addressing the disability community in their State of the Union remarks has no precedent in modern political history. George H.W. Bush, who championed and signed the ADA, made reference to the legislation in three of his four State of the Union addresses. Bill Clinton used his 1999 State of the Union to propose a modest long-term care tax credit as well as to call upon Congress to pass legislation making it easier for disabled people to remain in the workforce. In his 2000 address, he followed up to commend Congress for passing that bill into law.

George W. Bush focused on a more specific part of the community, but still emphasized disability services in at least three State of the Unions, twice calling on Congress to re-authorize the Ryan White Act supporting individuals with HIV/AIDS, and held a legitimately impressive record regarding improving treatment for HIV/AIDS internationally. An earlier State of the Union referenced his New Freedom Initiative, a Presidential agenda for expanding disability equality (albeit one with rather limited outcomes).

What’s galling is that President Obama has an extraordinarily strong disability rights record, arguably far more so than that of most or all of his predecessors. The Affordable Care Act’s ban on insurers discriminating against people with pre-existing conditions is a potentially game-changing step for disabled Americans. The Obama Administration’s Justice Department has engaged in unprecedented enforcement of the Supreme Court’s Olmstead v. L.C. decision, a 1999 court ruling requiring states to offer community services to seniors and people with disabilities that sat ignored for most of the Bush Administration. And thanks to an executive order signed by the President in 2010, the federal workforce has reached a record high in employing workers with disabilities.

So does it matter that President Obama doesn’t talk about people with disabilities, if his disability policy record is impressive? I think it does. During my time on the National Council on Disability and in my ongoing work with ASAN, I’ve seen the policy process up close and personal. Many of us in the advocacy community are aware of how many of the Administration’s most important disability policy outcomes came from the personal commitment and expertise of senior appointees. As Assistant Attorney General for Civil Rights, Tom Perez made freeing people with disabilities from institutions and nursing homes a personal cause. Similarly, figures like Sharon Lewis, Sam Bagenstos and Patricia Shiu made aggressive enforcement of disability rights law a priority across every area they had responsibility. Much of the disability policy legacy of the Obama Administration can be attributed to the energy and vision they and others like them brought to their roles.

No doubt the President approved of those initiatives, and he deserves credit for appointing people who sincerely care about the community to important positions. Personnel is policy, after all. But not every political appointee comes with a personal connection to the disability community. Most take their cue from the White House as to which constituencies and projects should be prioritized on an agenda that can not possibly encompass every worthy cause. When people with disabilities are mentioned as a priority in a State of the Union, it lights a fire under every government employee. We need that kind of attention and focus.

Three Articles, Three Kinds of Advocacy

This past month, I published three articles on issues in disability policy. Looking back on them, I’m struck by how (by no particular plan) they reflect a very interesting breakdown of the different kinds of disability rights advocacy.

I.

On December 9th, I wrote a piece for the Los Angeles Daily News on California’s crisis in inadequate funding for developmental disability services:

While the regional center system is admirable, California’s extraordinarily poor funding of it is not. For the last several years, it has become increasingly clear that a crisis exists in California’s developmental disability system, driven by low rates of provider reimbursement combined with a rapidly increasing cost of living. California’s rates are significantly below that of other large and western states, with the disparity between provider reimbursement rates and cost of living particularly drastic in the state’s major urban metropolitan centers. A review conducted by the National Association of State Directors of Developmental Disability Services found that ratios of service coordinators to people served ranked among the worst in the country. Advocates have been calling for additional investment — and now the state has an opportunity to heed their call.

This kind of work – lobbying for increased funding – is at once my favorite and also the most boring type of disability advocacy. Basically, it consists of getting as many people as possible to loudly nudge policymakers at around the same time. To some degree, crafting effective arguments and talking points about why funding increases are important for this particular category at this particular moment matters, but not anywhere near as much as capacity for organized loudness.

On the other hand, this is also the kind of advocacy that is the most unifying. Virtually every kind of disability advocate is welcome, because we all have a shared interest in securing more public funding for our drastically under-funded service system. Even if you believe (as I do), that certain types of services are inappropriate, harmful and should be phased out as soon as possible, the money to be saved from such measures is not sufficient to cover the gap between need and availability in high quality services.

Matt Carey of Left Brain/Right Brain, who shares my distaste for the anti-vaccine contingent in autism politics, expressed frustration that autism organizations who had turned out hundreds of protestors against California’s new school vaccination law were no-shows to the December 10th rally in Sacramento to increase funding for the state’s developmental disability services. I share his frustration. The amazing thing is, we actually mean it.

We would be absolutely thrilled if they did decide to show up in the future. These are groups who spend a good 90% of their energies advocating things that are morally abhorrent to our values – some of which have a habit of attacking my friends and I in very personal ways. But when it comes to fighting for funding for the systems we both depend on, our outlook is “Welcome aboard! The more the merrier!”

And this is as it should be. So long as we can all maintain a commitment to not trying to co-opt these kinds of events (something anti-vaxxers struggle with, to say the least), there is value in having neutral ground where we can all come together to support the public funding that makes arguing about what kinds of services and how they should be delivered possible. This can be somewhat hard to maintain at times: when I spoke at the Sacramento rally, I had to make sure to focus my comments on why the service system needed more money, not focusing on the parts of it, like sheltered workshops and group homes, that on balance could use less.

But if all parties can maintain that mutual respect, we can leverage our political strength far more effectively than otherwise. When we come together to ask the State for more money, I promise not to bash Autism Speaks on the steps of the Capitol building if you promise not to talk about the autism epidemic coming to steal our children in the dead of the night. We may then return to our regularly scheduled trench warfare. This is also as it should be.

II.

After the horrifying shooting in San Bernardino and statements from Speaker Paul Ryan and other Republican politicians that they intended to leverage it to try and pass Rep. Tim Murphy’s atrocious mental health legislation, I wrote a piece for the Guardian opposing the Murphy legislation and highlighting the appalling hypocrisy of politicians who blame mass shootings on people with psychiatric disabilities while cutting the Medicaid funding that supports mental health services:

While Speaker Ryan’s purported concern over the mental health of Americans is touching, it becomes somewhat disingenuous when one takes note of his proposals to drastically slash Medicaid funding – the single largest financing stream for mental health services in the United States. The Senate sponsor of the Murphy legislation, Senator Bill Cassidy, is also on record proposing significant cuts to Medicaid expenditures. Both stances call into question the degree to which improving America’s mental health services infrastructure is truly a priority.

Politicians who propose Medicaid cuts while arguing that the Murphy legislation is the solution to our gun violence problem seem to believe that the problem with mental health in America today is a lack of coercion, not a lack of funding. Their proposed policy recommendations suggest that they believe that we can cut funding and improve services, simply by depriving Americans with psychiatric disabilities of their right to decide how they receive care and who gets to know about it. This is an astonishing assessment; the only benefit of proposing such policies is the ability of politicians to be seen taking action without angering the powerful firearms lobby.

The main point of this article was to push back against the Murphy legislation, which would expand forced treatment while drastically reducing the HIPAA privacy rights of people with psychiatric disabilities and the ability of the Protection and Advocacy rights protection programs to represent them effectively. Since Speaker Ryan had announced his intent to try and move the bill as his main legislative response to the San Bernardino shooting, the political dynamics surrounding it were also very relevant.

This kind of advocacy – about how services and public funding should be structured – is very different from the first kind of advocacy. For one thing, it’s far more contentious. It usually involves pushing for change that threatens the established interests of existing provider agencies or that challenges ingrained assumptions about the capabilities of people with disabilities held by family members and professionals.

It can involve acrimony and anger, with groups and individuals who may stand side by side on funding issues suddenly working at cross-purposes. It drives policymakers absolutely bonkers, since they generally don’t know which disability group they should consider empowered to “speak on behalf of the community”. This kind of advocacy is controversial, confusing and often painful. It is also absolutely vital for the healthy evolution of disability services.

Contrary to those who see the sky falling in every drop of rain, internal political fights over disability policy are not new to the disability community. In the 1970s and ‘80s, for example, groups like TASH and the Arc fought pitched state-by-state battles with VOR and other pro-institutionalization advocates. Our modern system of community services and the growing number of states that have closed all of their large, state-run institutions for people with developmental disabilities is a direct result of that fight. If disability rights advocates were unwilling to court controversy by fighting with other disability groups, there could not be a disability rights movement.

On my last day on the National Council on Disability, I and a few other advocates spent about a half hour talking with Rep. Tim Murphy about his legislation. (Funny story: We ran into him while in a congressional office’s waiting room. Thanks to my prosopagnosia, I only figured out who I was talking to about five minutes after the conversation started. Not my finest moment.)

Leaving that discussion, we were convinced of two things: first, that the Murphy legislation was as ill-advised and pernicious as ever, and second, that Rep. Murphy was sincere in his rhetoric as to why he was introducing it. Like many psychiatrists (his professional background), Murphy actually believes that the problem with the mental health service system in the United States is that patients have too many rights and too much ability to refuse treatment. While he may be taking advantage of the public fear around mass shootings, he is doing so to advance policies he sincerely and honestly believes in.

Recognizing this is important, in my opinion. Not because I think it makes Murphy’s bill any less of a disaster to mental health policy, but because it should remind us that one does not need to wait for a mustachioed villain maniacally cackling over their evil ways to find an enemy worth fighting. Many of the people promoting the most horrifying, dehumanizing, dangerous things for people with disabilities are sincere, well-intentioned and nonetheless horribly, tragically wrong.

III.

Yesterday, I wrote for the Guardian again (they have great editors) about the London Sperm Bank’s policy of refusing donations from autistic donors and those with other neurological disabilities:

Reproductive technologies are being used to remove autistic people from future generations, not just to create “designer babies”. Privately run sperm and egg donation programmes, IVF clinics and laboratories around the world are making decisions that could eventually change the human race.

Last month, I joined more than 180 progressive academics, scientists, activists and public intellectuals in an open letter expressing concern over how new gene editing techniques allow for heritable human genetic modification: changes to the human genome that could irrevocably alter the future generations of humanity. New technology is emerging that will allow for “designer generations”….

Disability has always been contextual. Many individuals who are today diagnosed with learning difficulties or intellectual disabilities would not have been considered such in a society before universal literacy, for example. Tomorrow’s social and technological progress may lead to still new disabilities. demonstrating that the quest to eliminate disability will always be a moving target. Such changes may leave humanity less equal, less diverse, and perhaps even less human.

This is a very different kind of advocacy than the previous two. It isn’t about what level of funding disability will receive or what kinds of services people will get. In this particular case, it’s about what kind of people will be allowed to exist – but that isn’t the only thing that fits into the broader category it belongs to.

On the Council, we referred to this as “looking around the corner” work, enabling us to prepare for ways in which broader societal changes might impact people with disabilities. Within it, we included things like making sure that self-driving cars were accessible, that evacuation efforts after natural disasters included people with disabilities, or that wellness promotion initiatives in workplaces did not result in discrimination.

Sometimes “looking around the corner” topics became such a present issue that that name wasn’t really a good fit anymore, as in the case of physician assisted suicide or accessibility of ride-sharing apps. But in a broader sense, this advocacy is about how society at large will approach disability and disabled people within the context of technological innovations and other new developments that are not exclusively about us, yet nonetheless impact us a great deal.

It is hard to do this kind of advocacy, in large part because it brings us into contact with forces well outside the disability world. The truth is that while institutional inertia and state fiscal woes limit the availability of public resources, there aren’t usually strong lobbying efforts opposing disability services funding. That doesn’t mean it is easy to get – but there isn’t exactly an opposition. And in fights over service quality or type, we know our opponents intimately, often on a first-name basis, as they are our partners in other kinds of advocacy.

When we deal with this third type of advocacy work, we often find ourselves facing opponents (and needing to recruit partners) from outside the disability space. In doing so, it is suddenly all too apparent how small our world is and how comparably weak the disability community is as compared to other stakeholders and social movements.

It is an open secret amongst Washington, DC’s disability leadership that we are not really a viable political constituency. We could be – the numbers certainly justify it – but compared to the level of organization, money and mobilization in other minority communities or on the part of major industry groups, we are tiny. Trying to ensure that the needs of people with disabilities will be met on advocacy issues that merit the attention of the big political players is often a humbling experience.

Three articles, three kinds of advocacy. We all engage in different mixtures of the above, but I think this captures the gist of how disability advocacy  can be classified according to type. What kind of advocacy do you engage in? Do you focus on just one of these categories or split your work across two or three? Are there others that I haven’t listed here? Feel free to weigh in in the comments. 🙂

P.S: Even though this is a personal blog, I would be remiss in my role as a non-profit employee if I failed to include the traditional New Year’s Eve fundraising appeal. If you feel like any of these kinds of disability rights work are important, consider donating to support ASAN’s end of year appeal. Any donation you make prior to midnight tonight will be matched by a generous anonymous donor. You can see more about ASAN’s work by checking out our annual report, available here.

Jefferson, Jabotinsky and the St. Bartholomew’s Massacre

As I mentioned in my inaugural blog post, this being a personal blog I will on occasion write about things that interest me and perhaps few others. The internet being a vast and bizarre place, maybe someone of similar interests will stumble across this post.

Thanks to my newfound love of the hip hop musical history Hamilton, I’ve been reading some of the Founding Father’s correspondence on founders.archives.gov. I’d recommend the hobby to anyone. Few pleasures compare to going through someone else’s mail – all the more so if they happened to have started your country.

There’s a lot worth writing about in those archives, but one thing that jumped out of me in particular was a letter Jefferson wrote to John Jay on September 19th, 1789 while America’s Minister to France. Shortly before his departure, Jefferson began writing regular updates on the state of internal politics in Revolutionary France to John Jay, then Secretary of Foreign Affairs for the nascent United States.

“Civil war is much talked of and expected: and this talk and expectation has a tendency to beget it. What are the events which may produce it? The want of bread… A public bankruptcy…[and] the absconding of the king from Versailles. 

This [last] has for some time been apprehended as possible. In consequence of this apprehension, a person whose information would have weight, wrote to the Count de Montmorin adjuring him to prevent it by every possible means, and assuring him that the flight of the king would be the signal of a St. Barthelemi against the aristocrats in Paris and perhaps thro the kingdom. M. de Montmorin shewed the letter to the queen, who assured him solemnly that no such thing was in contemplation. His shewing it to the queen proves he entertained the same distrust with the public. It may be asked what is the queen disposed to do in the present situation of things? Whatever rage, pride and fear can dictate in a breast which never knew the presence of one moral restraint.”

There is much of interest in this correspondence – the casual contempt Jefferson possesses for the morals of the 33-year old Marie Antoinette and the perilous political situation in France are both crystal clear. But neither of these things are new for any reasonably educated student of history. No, what I find fascinating is the particular reference Jefferson uses to warn of a potential massacre of the French aristocracy.

“The flight of the king would be the signal of a St. Barthelemi against the aristocrats in Paris and perhaps thro the kingdom”

What is this St. Barthelemi that Jefferson and the French aristocracy feared? How well known must it have been that he felt he could drop it casually into an official diplomatic communication to his superiors in the new American government?

As it happens, I had heard the term previously – in Hillel Halkin’s excellent recent biography of Vladimir “Ze’ev” Jabotinsky, the founder of Revisionist Zionism. In 1898, over a hundred years after Jefferson’s letter, Jabotinsky attended a lecture by Nachum Syrkin, an early proponent of socialist Zionism. Jabotinsky, then an 18-year old law student at the University of Berne with little prior knowledge of Zionism, commented that he had insufficient knowledge of socialism to commit to that ideology, but he felt that Europe’s Jews must make plans to flee to Palestine as “the only hope of avoiding a Bartholomew’s Night”. 

What was this St. Bartholomew’s Massacre? More importantly, how was it so well known that a world renowned statesman like Jefferson and a Jewish teenager like Jabotinsky could each casually drop it into conversation a century apart from each other, both with a perfect expectation of being understood by those around them?

The St. Bartholomew’s Day Massacre took place in 1572 during a brief interlude in the French Wars of Religion between the Catholic establishment and the Protestant Huguenots. Huguenot leaders had gathered in Paris, a rabidly Catholic city, to celebrate the upcoming wedding of the King’s sister Margaret, a Catholic, to the Protestant prince Henry of Navarre. The marriage was designed to cement a fragile peace between the warring factions. 

Unfortunately, several days after the wedding, the Huguenot leader Admiral Gaspard de Coligny was shot by an assassin working for parties still unknown. The bullet failed to inflict life-threatening injuries, but Catholic leaders feared retaliation from the Huguenots and decided to preemptively kill their leadership. Acting on instructions from the King and his mother, Catherine de’Medici, the King’s Guard engaged in a coordinated assassination of several dozen Huguenot leaders in the early hours of the morning. 

Seeing that the King was ready to sanction violence against Protestants, Parisian mobs quickly formed to hunt them down throughout the city. For the next three days, mass slaughters ensued throughout Paris, with men, women and children murdered in their homes and in the streets, their bodies then dumped into the river Seine. Elsewhere in France, similar events took place over the next several weeks. Modern historians place the death toll somewhere between 5,000 to 30,000 people. After the Paris massacre, the city had to pay workmen to bury and pull from the banks of the Seine over a thousand bodies.

These grisly details certainly justify the use of the St. Bartholomew’s Massacre as a natural allusion for mass violence against a specific group. But how to explain the persistence of this reference, centuries after the event? 

This is what I find truly striking, and indicative of the degree to which 1898 and 1789 (and perhaps even 1572) belonged to the same era in a way that 2015 does not. The St. Bartholomew’s Massacre remained a common reference as late as 1916, when the famous (and incredibly racist) filmmaker D.W. Griffith incorporated it as a major part of the narrative in one his films. But as World War One raged on, it would soon become irrelevant as a symbol for mass slaughter.

In the end, the St. Bartholomew’s Massacre could persist for three hundred years as an easy reference for horrifying violence because it was relatively rare in European history that such violence took place against a group that was accepted as part of the European polity. While Jews were regularly subject to such massacres, most European nations legally prohibited Jews from citizenship till the 19th century, with horrifying anti-semitism continuing (and in some places, intensifying) well beyond that. Europe’s pervasive and institutionalized anti-semitism prevented such events from being seen with horror in the historical record. 

Ditto colonial massacres or the many and varied forms of violence that accompanied the slave trade. Europeans did not see violence against Jews or Africans as truly capable of motivating any form of visceral horror. St. Bartholomew’s Massacre, taking place as it did against a European Christian population (albeit a minority one rabidly hated by the French populace), carried more resonance. After all, it was very unusual to see violence on that scale against people who “mattered”.

The 20th century brought a succession of sectarian massacres that made insignificant the mere tens of thousands of victims of St. Bartholomew’s. After Gallipoli or the trench warfare of France in World War One, let alone the industrialized murder of millions of Jews in the Holocaust, the St Bartholomew’s massacre no longer stood out. Even Jabotinsky, who foresaw the danger and spent his entire adult life attempting to open the gates of Palestine to allow Europe’s Jews to escape before it was too late, would have had a hard time imagining the depths of horror that the 20th century would bring. No modern commentator would reference St. Barthelemi as the archetype of eliminationist violence. Terrible as it is to realize, the 20th century made small potatoes of the most horrifying event that 18th and 19th century thinkers could think of.

Dealing with Accidental Discrimination

One of the core principles of disability rights activism is that lack of access for a person with a disability is a form of discrimination. Someone who holds a public event in an inaccessible building, or refuses to provide large print or braille materials, is not only violating the law – they are discriminating against a person with a disability. We use that word – discrimination – advisedly, intending with it to draw a direct parallel to someone operating a Whites-Only lunch counter or tacking on to their classified ad “Irish Need Not Apply”. And there is good reason for that – from the perspective of the person being excluded, there is little difference, and the less malicious intent of the person doing the discriminating does not change the nature of the exclusion.

But not every form of discrimination is the same. Civil rights law has long recognized the difference between disparate treatment – when someone engages in intentional discrimination against you because of your race, sex, orientation, disability or other protected class – and disparate impact – when an ostensibly neutral policy has a disproportionately negative effect on a specific protected class group. For example, a landlord that refused to rent to black prospective tenants would be engaging in disparate treatment discrimination. In contrast, a public housing authority that only awarded low-income housing tax credits – used predominantly by racial minorities – only awarding allocating those credits for use in predominantly black inner-city neighborhoods (leading to residential segregation) might be disparate impact discrimination.

Disparate impact discrimination, which can occur without ill intent on the part of the person discriminating, is not unheard of in non-disability civil rights law – the Civil Rights Act of 1964 has long recognized it and the Supreme Court ruled on a case earlier this year affirming the Fair Housing Act covered this kind of discrimination.

Social justice theorists often refer to disparate impact as institutional discrimination. To make things less clunky, let’s refer to disparate treatment as malicious discrimination and disparate impact as institutional discrimination. 

Institutional discrimination is written into the Americans with Disabilities Act to a much greater degree than in other civil rights statutes, which generally require some form of class action litigation or statistical analysis showing widespread negative results before a disparate impact claim can be made. The ADA, in contrast, allows for an individual redress of institutional discrimination – the right to demand a reasonable accommodation from an employer, program or place of public accommodation.

The requirements of the ADA do not only prevent covered entities from refusing to hire or serve a person with a disability out of an irrational prejudice or whim. They require those hiring or operating a business or organization to actively work to make themselves accessible, even if it involves changing practices or architecture that were previously thought to be neutral. Under the ADA, not discriminating is more than just stopping a refusal to hire or serve a person with a disability. To truly not discriminate, one must take steps to remedy the institutional barriers that exist – from stairs to inaccessible communication methods – in a place of business. And unlike other civil rights statutes, an individual can assert the right for a business, school or program to make those changes, without having to prove that they impact a larger group of similar people to do so.

In many ways, that makes the ADA one of the most progressive civil rights laws this country has ever passed. It also means that sometimes, figuring out the right ways to handle institutional discrimination we see or face in our day to day life can be more difficult. After all, for a person to stop engaging in malicious discrimination all they have to do is…well…stop doing it! It’s easy! Getting them to decide to do the right thing may be more difficult, as is figuring out what to do when one suspects malicious discrimination but cannot prove it, but from the perspective of the discriminator, stopping malicious discrimination is comparatively easy.

Comparatively easy. Compared to what, you may ask?

Compared to stopping institutional discrimination. Someone engaged in institutional discrimination may not be aware of what they are doing until told. They may require convincing, or point to superficially valid non-discriminatory rationales for why they are doing what they’re doing. Sometimes, as with the failure to hold an event in an accessible location, they have no real excuse for their ignorance. Twenty-five years after the ADA, you’d be hard pressed to argue that any organization holding a conference or other activity open to the public should be failing to recall the basic accommodation of “hold this in a place wheelchair users can enter”. But there are other kinds of institutional barriers that an event organizer might legitimately not have heard of – and when those come up, it may not be possible to remedy them right away.

Conflicting Access Needs

A year or so ago, the National Council on Disability held an event in Atlanta on the school-to-prison pipeline and disability issues, focused on the issues impacting minority students of color with disabilities. The event was well attended and featured a wide variety of interesting and informative discussion on an issue that too often goes overlooked.

There was just one problem: the sound system was slowly killing me.

I don’t know if it was crappy microphones, feedback on the speakers, or demonic possession of the venue but every other person who spoke was accompanied by the dulcet tones of a horrific high-pitched screech. To make matters worse, what was head-splitting agony for me was only a mild annoyance to the other, almost exclusively non-autistic, people in the room. After an hour of the administrative staff trying and failing to fix the feedback, I asked if we might consider turning off the microphones altogether.

“We can’t – the CART transcription is being done remotely, and if we turn off the microphones the Deaf and hard of hearing Council Members and attendees won’t be able to follow the event.”

Meeting my access needs would result in a lack of access for someone else. I tried taking breaks, walking in and out of the room, pacing back and forth in the hallway, listening from across the hall, but nothing worked. By the afternoon, I had no other choice but to make an early departure.

You could very easily imagine how this situation could have played on social media.

“The National Council on Disability made it physically painful for autistic people to be in the room at their event!”

“NCD’s school-to-prison pipeline event didn’t accommodate autistic people!”

“NCD forced its autistic member to leave its school-to-prison pipeline event!”

“NCD tortured its autistic member out of the room!”

All of these statements, with the possible exception of the last one, are technically accurate. But in an important way, they aren’t honest. Figuring that out would be nearly impossible for the average person hearing about the situation second- or third-hand, who wouldn’t necessarily know about the conflicting accessibility issue. This is part of why resolving single cases of inaccessibility via public campaigns is so difficult, and why advocacy organizations typically look for patterns of behavior or specific policies to focus on, to ensure that a problem is systemic in nature and requires pressure rather than education to rectify. Sometimes access is harder than it looks – and while proper planning should catch things like buggy speakers and microphone feedback before the event starts, not every access problem can be fixed in the moment on the spot.

To take another example, at the Keeping the Promise Summit, convened by the Autistic Self Advocacy Network, Self-Advocates Becoming Empowered and the National Youth Leadership Network, autistic activists came together with activists with intellectual disabilities to come up with a unified definition of what is and what is not Home and Community Based Services (HCBS). The resulting document served as one of the inspirations for the very impactful Center for Medicare and Medicaid Services HCBS Settings rule, now transforming state service systems across the country. But it almost never happened.

SABE recommended a moderator for the event that they knew and respected. But when the event opened, most of the autistic delegates in the room found the person intolerably condescending. “She’s talking down to us,” many of our representatives complained to me, and asked me to confront her about our feeling that she was preventing the discussion of more complicated topics. With great indignation, I did so – only to learn from one of SABE’s leaders that many of the delegates with intellectual disabilities needed the moderator’s approach of repeating each topic under discussion in extremely plain language.

Later during the summit, the agenda called for us to split into small groups to talk about the dimensions of community living in more detail. Near the end of lunch, SABE’s leader came up to me. “We need to stay in a large group session – our members have trouble keeping track of the discussion in small groups. They go too fast!”

“Hang on a moment! We put small group discussions on the agenda specifically because many of our people feel uncomfortable speaking up in a large group format. If we stay in the large group, a lot of our people won’t know when it’s okay to talk and so won’t get a chance to participate. If you cancel small group discussions, you’re not respecting our access needs!”

What followed was a rather fascinating sight – the Presidents of North America’s two most prominent self-advocacy organizations stood in the center of the room yelling at each other. In that moment, I am certain we each saw in each other everything that had frustrated us all our lives.

I saw in him the tendency, very common then and still present today, of many in the Intellectual and Developmental Disability (I/DD) community to look at autistic people without intellectual disabilities as not really disabled, and thus not necessary to accommodate or think seriously about the access needs of. I’m sure he saw in me the many erudite experts whose jargon and unwillingness to explain themselves in simple terms were denying people with intellectual disabilities the tools they needed to have more than a token seat at the table. We were both loudly demanding our rights all over each other.

At the end of it, we managed to talk the situation through and kept the small group discussions – but dispatched several self-advocacy organization leaders to circulate among each of them to make sure everyone understood what was going on and that the pace was not moving too fast. We ended up working very closely together many times in the years to come, and are still in touch today.

Both the ASAN and SABE representatives could easily have gone home after that event loudly proclaiming that the other side was full of bastards that didn’t care about their access needs. That came very close to happening. But it didn’t, because we were both more committed to figuring out a middle path that would be imperfect for both of us but allow some degree of access for everyone in the room.

After the event, we kept the commitment by coming up with a modified means of communication that involved Skype calls with both voice and text components, to account for the discomfort SABE representatives had with text-based communication and the similar discomfort ASAN’s representatives had with conference calls. That system was definitely more time-consuming and cumbersome than I would have liked. But without that kind of creative back and forth to come up with imperfect solutions, the Keeping the Promise report would never have existed.

Does that mean we shouldn’t assert our accessibility rights? Of course not – after the incident in Atlanta, I made sure that future NCD events had a working sound system free of static, and strongly expressed my frustration with the prior event being inaccessible to me. Does it mean that people should only pursue official legal investigations as redress to institutional discrimination? Probably also no. Most people don’t have access to those means of justice, and they can be costly, time-consuming and ineffective. But it does mean that we should look for patterns of behavior before calling out someone accused of institutional discrimination as a bad actor, callous to the exclusion they are causing.

This is part of believing in institutional discrimination – believing that it is something that takes time and effort and creatively to fix, and that even good people can struggle in that process. Particularly when one is asserting an access need that is new and unfamiliar, it can take time to figure out a way to meet it. At times, it may be impossible to be accessible to everyone all the time right away. Figuring out a way to acknowledge this while still maintaining constant pressure for as rapid as possible a solution is one of the central dilemmas of disability advocacy.

Managing Undue Burdens

I remember a local autistic activist organizing a one day film festival approaching me in an extremely distressed mood. He had realized that while they had put in place captions and were prepared to make an American Sign Language interpreter upon request for the event, they had just realized that they had no plan for audio descriptions for each of the several movies they planned to show throughout the day. What if a blind person showed up? Should they should cancel the event?

We spent some time talking, and eventually worked out a few strategies recognizing that professional grade audio descriptions perfectly synced to the movie’s timing were probably beyond the abilities of a local self-advocacy group’s film day. If requested, another attendee could be present to describe uniquely visual content to a blind attendee or a description of it could be e-mailed in advance. Ultimately though, I explained that the ADA generally requires that an accommodation request be considered in light of the resources of the group it was being made to. That’s why it’s called “reasonable” accommodation – the extent to which an accommodation is or is not reasonable is dependent on the circumstances of those who would have to provide it.

Sometime after this, an activist campaign led by a blind comic book fan successfully pressured Netflix to audio-describe their original television series Daredevil and eventually all of their original content. This occurred after the film festival inquiry came to me, but I could very easily imagine the organizer coming to me and asking, “How is our failure to audio-describe any different from theirs?”

To that, I would likely give a simple response: “You’re not Netflix!”

The ADA explicitly recognizes something called the “undue burden defense” – the idea that employers and places of public accommodation aren’t required to make accommodations that would pose an undue burden on them – a concept that is very much tied to specific circumstances, like the cost of the accommodation, the organization’s size, number of employees, budget and other relevant factors. In short, the local film festival with the $1,500 budget has a very different set of obligations than the multi-billion dollar company.

Of course, Netflix would like to claim they’re not Netflix either – witness Uber’s continued disgraceful attempts to present themselves as ‘just a technology startup‘ and not subject to the ADA’s requirement to provide wheelchair accessible transportation. Claiming an undue burden has a justifiably bad rap – it is the first refuge of every corporate scoundrel trying to avoid even making an effort on disability accessibility.

But at some point, it matters what is and is not true. Netflix legitimately does have the resources to audio-describe all of the original content it produces, and could probably put in place a reasonable timetable to get its non-original library audio-described as well (something it has already accomplished for captioning, thanks to the litigation prowess of the National Association of the Deaf). A local autistic film festival legitimately can’t get in place audio-descriptions up to the standards blind people have a right to expect – but can make sure that captioning is available for Deaf and hard of hearing viewers, because of the more established nature of that accommodation. Most DVDs come with captioning already enabled, making this a relatively simple task. In the event that there’s a desire to show a film that doesn’t come with captions built-in, there is a sufficiently large market for CART transcription that it can be made available even on a small film festival budget.

Often, the way to solve undue burden problems is to look at ways of elevating responsibility to a more powerful actor. For example, an emerging best practice in disability employment is the creation of Centralized Accommodation Funds, which take responsibility for paying for reasonable accommodation costs for all disabled employees at a company. This means that a particular manager is never at a disadvantage for hiring an employee with a disability who has expensive accommodation needs, such as a deaf person who requires regular use of interpreters or CART transcription. Rather than come out of the budget of the operating unit with the disabled employee, a centralized fund pays for the accommodation from the company’s broader budget.

But this isn’t always possible. Many smaller businesses don’t have access to sufficient resources for CART transcription at all staff meetings, in the same way that a local film festival on a shoestring budget probably can’t commission audio-descriptions for a full length movie. That’s why the ADA does recognize the concept of an undue burden, and requires that employers and employees go through an interactive process to try and figure out an accommodation strategy that matches the employee’s need with the employer’s abilities, resources and circumstances.

It’s very easy, at one level, to look at the undue burden defense or the interactive process requirement and say they’re mere concessions to political expediency. That a perfect world’s ADA would allow someone to simply name their preferred accommodation and place all the force of law and justice on their side until it was received. And certainly, a perfect world’s ADA would have many things that ours does not. An proactive inspections and enforcement mechanism, for example, so that disabled people do not need to constantly be in the business of making complaints to get the law enforced. Or an easier means of getting people access to legal representation, a hard task even for those with means, much more so those without. But I don’t think that the perfected ADA would allow for demanding any accommodation from any entity at any time and at any place.

We don’t want an Americans with Disabilities Act that has all the impact and meaning of the East German Constitution – full of fine-sounding rights that everyone knows will never be enforced. We want an ADA that is practical, pragmatic and ultimately possible for those bound by it to follow. After all, if following the ADA was not realistic even for employers and places of public accommodation making the best of efforts, we would hardly have the capability to respond forcefully to those who willfully violate it.

Instead, let’s recognize that stopping institutional discrimination is often much harder than stopping malicious discrimination – but is still necessary and worth requiring as a matter of morality, law and justice. We should never have to compromise our access needs or give up our rights to be included and treated fairly. Yet alongside that, it is in our interests to acknowledge that figuring out how to be accessible isn’t always something one gets right the first time, and so look for opportunities to build systems of collaboration and education alongside and in addition to our confrontational advocacy, so that our enmity may seem more impactful in comparison to our friendship. If we can make our first instinct to teach, we can be even more sure of ourselves in targeting for more aggressive approaches those who deliberately refuse to learn.