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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.

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.