Month: December 2015

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.


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.


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.


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 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.