1.
On July 16, 2019, members of the Rochester (NY) and Atlantis (Denver, CO) chapters of the disability rights group ADAPT (note: at the time I was a member of the Chicago chapter) were on Capitol Hill in Washington, DC. They were frustrated and angry and exhausted. They had been focusing on passage of the Disability Integration Act (DIA), a bill intended to eliminate many forms of institutional bias.
“Institutional bias” is the term for the systemic features that lead far more people to end up in institutions like nursing facilities (NF’s), developmental centers, and intermediate care facilities for the developmentally disabled (ICF-DD’s) than would be there if people who qualify for institutional placement had no restrictions on choosing to live in their own homes or community-based facilities instead. Most people want to live at home, but an enormous number of them end up in institutional settings anyway, steered there by a system that makes institutional car a likely outcome of restricted choices.
The DIA strategists had set a goal of securing passage through the House by July 26, the 29th anniversary of President George H.W. Bush signing the Americans with Disabilities Act into law. However, it looked as if they would not meet it despite their having completed what they had understood had been the tasks the Democratic leadership had told them would trigger a vote. They were hung up on a hearing. Representative Frank Pallone, the Chairman of the House Energy & Commerce Committee, had to be convinced to schedule one, and he didn’t want to. That day, the ADAPTers were trying to get their hearing.
One of the activists there was Bruce Darling from Rochester, the Executive Director of that city’s Center for Disability Rights (CDR) and the Board President of the National Council on Independent Living (NCIL). Darling is a long-time and highly visible ADAPT organizer. Another was Dawn Russell, also a very experienced and well-known leader, from Denver. Also present was Dara Baldwin, a D.C.-based disability leader who works for CDR and has played a key role in coordinating the disability community’s efforts on passing the DIA. As is ADAPT’s custom, activists posted a livestream on the National ADAPT Facebook page and an audience watched from home.
While the group was in Representative Eshoo’s office, Darling made statements that attracted attention. About 14 minutes into the video, he said, “Our talking point is, ‘Democrats care more about people who are not legally in this country than their own citizens who are disabled.’ It really is what the message is here. That basically [pointing to different disabled activists] you and you and you and you, you are less than. You are not worthy. We are more concerned about immigrants who happened to come here in a non-legal manner than we are with our own citizens, and we will lock disabled people up. This is going to be the message from the dais at the [NCIL] conference. This is not what Democrats want. It’s not what we want.” Viewers in the disability community began to contact their friends. “Are you watching ADAPT? Did you see what Bruce said?” The group was gone from Eshoo’s office by the time I was alerted to the video, and several of my friends and I discussed what to do. Eventually, I tweeted. I may have been the first to do so or I may have just been the first to be seen by people whose retweets were widely read. I said that Darling had “suggest[ed] that disabled people with and without citizenship are in a competition for justice” and that he was “speaking on my behalf without my consent.” I denied that he – or anyone – had the authority to say that in my name.
Then came more bad news. “Have you seen the other one?” After leaving Representative Eshoo’s office, the group had gone to Representative Correa’s. Again, they posted a livestream, and again, they had an audience. In Correa’s office, about 22 minutes into the video, a staffer talking to the group said something about autism which was hard to decipher, and Russell responded by speaking directly into the camera. I have difficulty deciphering the audio track, but Russell appears to have said, “Autistic group! Hey, hey Julia Bascom, hey Alison Barkoff, hey whoever you are out there- you’re coming up again, I hope you’re watching! And whoever is guilty, make the phone call! It’s the autistic community, again. I heard it!” The Correa staffer reminded Russell that they were discussing an unconfirmed rumor and offered to try to confirm it. Russell began to discuss other things, but then returned to the topic. “Hey, Jackie [an activist from Atlantis ADAPT],” she said. “I just want to take you back to last night’s conversation. They [almost certainly a reference to the Autistic Self Advocacy Network (ASAN)] were they problem at Gottlieb’s [a reference to an ADAPT action in March, 2018, in which Russell and I participated, and in which a number of the other activists in the room had also participated], and they’re the problem here. Whoever I’m calling out, you know who you are. And the boys can’t protect you, because the DD girls are coming.”
Bascom, the Executive Director of ASAN, is autistic, as are all of the current staff and board of ASAN. Barkoff, an active proponent of disability rights, is not disabled, but has a brother who is a member of the intellectual and developmental disabilities (I/DD) community and a leader in the self-advocacy movement.
Another activist responded, “I’m not following completely but I’ll just smile and nod.”
“Well they do,” Russell continued. “They do. They do. They know who they are. Or better yet, we know who they are.” A moment later, Russell addressed ASAN, Bascom and Barkoff again. “How dare you? How dare you use the activists, and how dare you use a whole group of people with disabilities that you misrepresent? Sitting here at the most important time in our history, the most important thing, and then whether it’s true or not, to keep hearing it as the under, you know, the quiet thing that there’s this group out here, but it’s like we said to [an aide in Representative Eshoo’s office], they’re cowards. Why do people listen to cowards? So if you oppose it come out openly and say it. No, you’re cowards. And you’re screwing the community, and you’re screwing the people that you say you serve.”
A moment later she addressed the activists again. “Until we deal with them…”
“We’re going to get stopped everywhere we go,” someone else finished.
The diatribe continued for a while longer in this vein, with the staffer again pointing out that the rumor could not be confirmed and unsuccessfully attempting to persuade Russell to stop. Eventually she finished.
Many people found this video hard to understand. Bascom and Barkoff have long track records of supporting the DIA and both ASAN (where, incidentally, I am on the Board of Directors) and the Center for Public Representation (CPR), where Barkoff is Director of Advocacy, have allied with ADAPT, NCIL and CDR. Barkoff is one of the most public figures associated with attempts to pass a reauthorization of the Money Follows the Person program, a highly successful initiative based on an ADAPT idea which has enabled tens of thousands of people to leave large congregate institutions and return to community-based settings. Bascom, Barkoff, and their organizations were key players in the 2017 defeat of Republican efforts to repeal the Affordable Care Act, in which ADAPT was elevated to higher media prominence than ever before.
Response to Russell’s video was far more muted than the response to Darling’s. But many in the disability rights community found both videos distressing.

 

2.
On the morning of September 29, 1982, 12-year-old Mary Kellerman, who lived in the Chicago suburb Elk Grove, died. Her family were shocked: the seventh grader had complained of a mild illness that morning, but they had assumed that treating her at home with Extra Strength Tylenol would be enough.
Shortly afterward, Adam Janus from nearby Arlington Heights, died, too. Janus had been a postal worker. His grieving brother and sister-in-law, Stanley and Theresa Janus, followed. Paula Prince, a flight attendant, died. The next to go was Mary McFarland, who worked at Illinois Bell Phone Center. The last death was Mary Reiner. Reiner had just given birth to her youngest child.
It turned out to be the Tylenol. All 7 victims had taken Extra Strength Tylenol shortly before their deaths, and the over-the-counter medication turned out to be laced with potassium cyanide.
The police rapidly determined that the bottles, which came from different lots produced in different plants, had to have been tampered with after they got to Chicago. They concluded that the manufacturer, Johnson & Johnson, could not reasonably have prevented what happened.
(Tamper-proof packaging became standard after these deaths, and a series of copycat crimes. But in 1982, nobody expected Tylenol to come in tamper-proof packaging.)

 

By October 5, 1982, the Chicago area was panicked. It was all over the news. Ambulances rolled up and down the street warning people not to take Extra Strength Tylenol. There was a killer on the loose, and as scary as a killer who might kill you from behind any bush is, one who might kill you from inside an over-the-counter bottle of trusted tablets or capsules in your own medicine cabinet is worse.
People around the country were nervous too. Could the same thing happen to them? Tylenol’s market share dropped to a fraction of what it had been. Suddenly, what had seemed like a brand to trust, and one Johnson & Johnson depended on – the previous year 17% of the company’s net profits had come from the sale of Tylenol – was associated with a terrible outcome. The brand looked like it might be another casualty of the killer, and the company, experts predicted, might never recover.
Then Johnson & Johnson recalled 31,000 bottles of Extra Strength Tylenol capsules and provided free replacement with tablets, which were safer. Within 2 months they had a relaunch, this time with tamper-proof packaging. And they rolled out a media campaign to make sure people knew. Throughout it all, Johnson & Johnson’s chairman, James Burke, was presented as honest and open and publicly available to keep people updated on the risk and how the company was handling it. People’s anxieties were calmed. It may have cost more than $100 million (the equivalent of over $265 million today), but it paid off. The company not only recovered, it recovered fast. And Tylenol remains a trusted name in over-the-counter pain medication today.

 

Although the Chicago Tylenol Murders case was never solved, and although it is exactly the sort of mystery that worms its way into people’s attention, that’s not what people today are most likely to be discussing when they bring it up. Johnson & Johnson’s crisis management is taught in business schools as an example of leadership. The company presented itself as capable and caring, reliable, taking charge and protecting lives. They spent enormous sums of money they weren’t going to recover, and did it quickly and, as far as anyone could see they did it without hesitation. Why not spend $100 million dollars? Seven people had died and the carnage had to be stopped.
But it’s worth noting that all of those actions, while they may have been in the public’s best interest, were in someone else’s, too: the shareholders’. And as much as we may like to tell ourselves that the purpose of Extra Strength Tylenol is to soothe our bodies and bring down our fevers, its real purpose in a capitalist system is to funnel wealth to shareholders. When the Extra Strength Tylenol brand is associated with capability and caring, with reliability, with coming into a situation where we are not at ease and setting it right, consumers are more likely to buy it – and a portion of what we spend duly makes its way to the shareholders. If we thought of it as dangerous, we’d spend our over-the-counter pain relief budget on Motrin or Aleve – or if we thought of Tylenol, Motrin and Aleve as all pretty much the same thing, we’d stop buying much of any of it. The $100 million wasn’t money spent and never recovered; it wasn’t “lost”; it was money invested. The return on that investment was consumer confidence, and that confidence transferred into shareholder payouts that wavered and bounced back, instead of dwindling away.

 

 

3.
Following the Darling/Russell Videos, the community surrounding the independent living submovement of the disability rights movement (from which both ADAPT and NCIL arose) was immersed in the leadership crisis. (ASAN emerged from the neurodiversity submovement, and Barkoff has ties to a number of the submovements.) NCIL was about to hold its annual conference the following week; the ADAPT biennial strategy meeting was the weekend after that. (I can’t speak to CDR. Although it has national influence, it is a local organization, and I don’t move in the right circles to know what is happening.) What needed to happen, both immediately and in the longer term, was hotly debated.
Factions emerged.
Some people thought one or both activists did nothing wrong. Some thought they were wrong, but not that wrong, or wrong but not horribly out of line with things that are routinely tolerated. Some thought they (and especially Darling, who has faced worse public consequences) were being “scapegoated.” Some thought others were providing “cover” for them and they deserved worse censure. Some did not understand the Russell video.
Some thought the videos showed isolated and uncharacteristic statements, and some thought one or both activists and/or the organizations they represented had engaged in a long-standing pattern of problematic behavior which was suddenly being scrutinized. Some thought that it was “only” undocumented immigrants and autistics who had been attacked, so why make such a big deal about it?
The organizations worked privately on crisis management and damage control.

 

 

4.
After World War II, entrepreneur Earl Tupper was having a hard time getting the raw materials he was looking for. This cut into his manufacturing and his profits. So he started trying to figure out what he could make out of what he could get, and he began playing around with a waste product called polyethylene.
Polyethylene was deeply unattractive in the form it was in when Tupper first started experimenting with it, but with the right combination of heat, pressure, and dyes, it could be used to create far more attractive, as well as food-safe, containers that fit right in on many American tables.
Not only that, but the new bowls were a significant improvement over the plastic food containers that had been available to American housewives up until that point. They were sturdier, and they came with lids that could create an airtight seal. That seal was so good that it would hold even if you threw the container across the room or bounced it off the floor – not a drop of the contents would be spilled.
If you had been storing your leftovers on china plates or in china bowls covered by plastic shower caps, the new “Poly-T” containers were a huge step forward. Food stayed fresher and was better protected. The bowls looked good on the table. But it’s not always enough to have a great product line, and Tupperware was not flying off the department store shelves.
Where it was being sold was in private homes, where experienced direct-home salespeople were able to demonstrate the product’s strengths to groups of potential customers, then place orders on those customers’ behalf with the distributors who recruited, trained, and managed them. In a meeting on April 2, 1951, a determined group of those distributors convinced Tupper to take a chance on a daring marketing plan.
Tupperware would be sold exclusively through their Home Parties division, and Brownie Wise, a savvy distributor who had built a strong record, first in Michigan and then in Florida, would run it.

 

 

Tupperware parties had an art to them. A housewife would “book” a party in her home, invite her friends, and function as hostess in exchange for a share of any sales made. The dealer would demonstrate the product line and use it as the basis of games. The dealer received free samples in direct proportion to sales made, and used those samples to provide gifts and prizes in the games. And at the end of the evening, the order books came out.
Guests new to Tupperware might buy something in response to the real advantages Tupperware offered over products they already used. But even as their kitchen cabinets filled up and copycat products became available, and even as the lids turned from hot new innovation to source of frustration (if you stored Tupperware with the lids on it took up a ridiculous amount of space, but if you stored it with the lids off, you had to search your collection of loose lids for the right one every time you wanted to pop some new leftovers in the fridge), many people kept buying Tupperware they knew they did not want or need. Tupperware parties could be that strong an influence on people’s willingness to buy the product.

 

 

5.
In his role as NCIL Board President, Bruce Darling quickly issued a public apology.
Darling’s apology acknowledged that what he had said had not been an official talking point. He made no excuses for what he had done and acknowledged the harm he had inflicted on ADAPT and NCIL, two organizations to which he has dedicated much of his professional life. He said, “I appreciate those that have held me accountable and helped educate me. I will strive to do better… and will work to end institutional confinement in all its forms and advance justice.”
The videos had been released in the morning of July 16. By the end of July 17, NCIL’s blog, the Advocacy Monitor, had published both Darling’s apology and the news that they had accepted their President’s resignation. An election had already been scheduled a week later during the conference; until the election was held, the Vice President, Sarah Launderville, would act as President. The organization would also hold a “listening session” at the conference.
ADAPT, with a less structured leadership system and far fewer formal processes, took longer to begin issuing statements. Like NCIL, the organization clarified that its values did not permit pitting one oppressed minority against another. It pointed the public to an established structure within the group, the Intersectional Justice Workgroup (IJ), which is led by and includes a number of deeply respected multiply marginalized ADAPTers. IJ had been established the previous year and had been working to address patterns of injustice within ADAPT. Now IJ took the primary responsibility for calling Darling in and helping him to do better.
To my knowledge, it has never been clarified whether IJ also worked with Russell. IJ had been created with leadership that cared deeply about the issue of lateral ablism. Even so, that had been a role many felt higher-level leadership had prevented it from taking on. Meanwhile while they had a huge job they were tackling hard. At least some of us who wanted the ablism issue addressed had sought a structure separate from IJ.
Darling’s ADAPT apology was similar to the one he had written for NCIL. It went further in some key respects. Where he had indicated his previous opposition to “oppression olympics [sic],” he now stressed that his controversial remarks were “out of character.” Where before he had pledged to do better, he now clarified at least some of what that would look like, including anti-racism training with the disability justice group Sins Invalid. And where he had promised to work toward a better future, he gave some indication of what that would look like, including advocating for one day of the next ADAPT National Action, a 4-day event held twice a year, to be dedicated to anti-racism training. ADAPT National Actions are traditionally planned by a small team of Day Leaders, roughly 13 at the present time. Darling is a long-time National Action Day Leader. The apology came very close to asserting that he would remain in that role. Apparently he did not intend to step down from a top leadership role as he had from his role at NCIL.
Russell did not issue a public apology. I am unaware of any private apologies or efforts at repairing ADAPT’s relationships with ASAN and CPR, which she had damaged. She has not responded to my efforts to contact her. A group of ADAPT chapters (including mine, and to be transparent, I am one of the people who participated in this discussion on my chapter’s behalf) issued a statement decrying recent changes in the balance of leadership and power within ADAPT. They indicated their intent to return to an earlier structure of decision-making – one that did not, commentators noted, have any Workgroups at all, and no formal structure to promote intersectionality. It was unclear from the statement whether activists envisioned dropping the Intersectional work or making at least some adjustments to the earlier model (which had been abandoned before I joined ADAPT).
IJ released a statement highlighting its work, both with ADAPT as a whole and Darling as an individual, and asking to be able to continue it.

 

 

6.
Sometime in the 1970’s social psychologist Robert Cialdini had wanted to study how people convince other people to do things, and he effectively went undercover, entering a series of training programs for people whose jobs require them to do things – marketers, salesmen, and so on – to learn their secrets. He then returned to his scientific research to evaluate and explore what he had been told. He reported his results in a 1984 bestseller, now available in its 4th edition, Influence: The Power of Persuasion, and another popular book, Pre-Suasion: A Revolutionary Way to Influence and Persuade. Now in his 70’s, Cialdini has retired from his professorship at Arizona State University and has a business selling his knowledge back to the intellectual heirs of the people whose student he once was.
Cialdini’s work on influence, on methods that are effective in getting people to do things you want them to do, has resulted in what he calls 7 universal principles: reciprocity, scarcity, authority, consistency, liking and consensus, which he discussed in Influence, and unity, which he added to the list in Pre-Suasion.
These principles enlighten us as to why people continued to buy Tupperware long after “the Tupperware lid cabinet” had become a source of frustration. They weren’t being invited to these parties by the professional demonstrator, but by a neighbour, someone they knew and liked. By the time orders were placed, they had played games and gotten prizes and gifts the demonstrator used to “prime the pump” and they felt that sense of wanting to give back, or reciprocity. They probably felt reciprocity to the hostess as well. After all, she had set up the lively gathering and served refreshments. And she was getting a share of any orders placed that night, so buying something was helping her out. All the women around them were buying Tupperware – that’s what one did at a Tupperware party! – so the apparent consensus was that buying it was the right thing to do. Finally, Tupperware was a good product. It really was. And one of the reasons the women at the party knew it was a good product was that they had bought it before. They used it every day. They were highly skilled at the art of running homes, which was not easy, and they did it affordably, reliably, and while juggling other responsibilities. If Tupperware wasn’t a good product they wouldn’t already have so much. Their choices at the parties were consistent with their earlier choices because they believed their earlier choices were sound.
These forces Cialdini identified and that Brownie Wise, who built Tupperware’s Home Sales division, utilized, are powerful. They work on us – even when we are aware of them – and they have many beneficial effects, permitting us to make fairly reliably good decisions without having to stop and think every situation through carefully. We have a lot of information to sift through; we cannot process it all. But the same principles can, in the hands of a skilled enough influencer, be used to get us to do things we will later regret. Cialdini’s Influence is written as a sort of Defense Against the Dark Arts text, helping people understand both the benign and the malign uses of influence, and avoid being shoved into things they don’t want to do by the latter.

 

 

Grassroots organizing is all about influence. Obviously, it is an attempt to influence the people with the power to fix injustices, to go ahead and fix them. But it also involves a great deal of cooperation from activists, allies, media, supporters, and potential recruits, as well as decisions about issues, goals, strategies and tactics. A group like ADAPT runs on the skill of its leaders to get and keep others’ cooperation using a variety of approaches. Some are deliberate and others intuitive, and some are more effective in a given moment, but without some significant ability to deploy influence, the whole thing falls apart.
Darling and Russell are two leaders who can consistently recruit, train, and turn out members when needed, and between them they have chalked up some impressive successes in persuading others to do things as well. For instance, Darling, as mentioned before, coordinates a great deal of the whole-community effort to pass the DIA, which has resulted in more than half the House of Representatives agreeing to cosponsor it (which strongly suggests those votes are locked in if it goes to the floor), and not only has Russell been one of the leaders of the effort within ADAPT (working closely with an ADAPTer who is also a CDR employee) but her team has pulled off such impressive feats as convincing Republican Colorado Senator Corey Gardner to support the bill.
The two leaders’ ability to wield influence within ADAPT, within the NCIL/ADAPT/CDR nexus, within the larger disability community, and on Capitol Hill is impressive. But it wasn’t at all clear that July morning that they had the influence to get DIA through the House in the next 10 days (as they had announced their intent to do), get it through the Republican-controlled Senate before the 2020 elections, and persuade Donald J. Trump, whose ACA repeal hopes they openly bragged about destroying, to sign it.

 

 

In the summer of 2018 I took Greyhound from Chicago to Rochester and sat down with Bruce Darling for a few hours to talk about ADAPT and about DIA tactics. It was a meeting brimming with ideas. It was a good day. I felt closer to the man than I ever had, and I felt good about that. Over the last few months, one part of the conversation has come back to me again and again.
Sometimes, Darling told me, in the midst of an action, in the shifting situation and under stress and without a clear sense of the big picture, an activist will do something they really shouldn’t have done. And when that happens, the other ADAPTers back them up. He told me a story of a time when all the Day Leaders – the experienced leaders who plan and run the action – were meeting across the street from their target, getting ready to issue their demands, when they saw one of their number talking to people at the site. By the time they got to him, he had negotiated a deal – not the one they wanted, but a deal. So they embraced it and celebrated and moved on.
The benefits of a “Heat of the Moment” norm like that are obvious. ADAPTers are often operating in chaotic situations, with imperfect information, and having to make decisions fast. Sometimes, in retrospect, a decision may seem unwise or a better one may become apparent. A norm that protects people from significant negative consequences for good-faith decisions the group needed them to make but later regrets makes leadership less emotionally fraught and keeps the group from fragmenting.
But it can be abused. A leader who goes beyond the popular “It is better to ask forgiveness than permission” maxim in recognition of a reality that it is hard to get permission – and the murky leadership structure of ADAPT can make seeking permission a very challenging prospect – and unnecessary to even ask for forgiveness, can do almost anything as long as they take care to maintain the factors that encourage compliance with the norm – things like
• likeability: both Darling and Russell can be extremely charming, and it makes people more likely to cooperate with them,
• authority: both Darling and Russell have decades of ADAPT experience and both are clearly looked to as reliable sources about how things are done, which lets unsure members choose them to look to for guidance,
• reciprocity: ADAPT members are expected to look out for each other, and Darling and Russell have likely at one time or another had most long-time members’ backs. This creates an urge in those members to have Darling’s and Russell’s backs too,
• consensus: anyone looking around will see that others are prepared to follow where leaders like Darling and Russell go, and this reassures uncertain members that it’s the right way to handle things,
• consistency: many ADAPTers, consciously or unconsciously, have complied with the norm before; having gone along with something they were hesitant about, they will have concluded that they made the right choice. People tend to believe that they have made good choices because they tend to believe they are the sort of people who make good choices. And having made good choices in previous situations, they are likely to make similar choices when the opportunity presents itself in the future, and
• unity: people tend especially to align themselves with people they closely identify with, who remind them of themselves. ADAPT members tend to strongly identify with each other: ADAPT is the largest disability group engaging in civil disobedience, and ADAPTers often find a way to “fit in” in the group that they may not elsewhere.

 

 

Unlike NCIL, ADAPT does not have a formal leadership structure or a clear set of established procedures. There are structures for conveying decisions and information through the ranks at large events; some chapters have specific ways of handling things. But a great deal of what happens is informal, mediated through norms that few can clearly articulate but that most of the group follows. Consequently, power accrues not to those people whose colleagues choose them to wield it, but to those people who are best able to wield informal influence – instinctively or consciously – over those same colleagues.
Another key feature of ADAPT is personal loyalty to one another. Again, this is in many ways a highly functional norm: bringing 150 or so activists from across the country – activists who are comfortable enough denying authority to repeatedly commit civil disobedience – twice a year and get them to move as one requires members to set aside their differences and stick together.
But that norm makes it very difficult to criticize, let alone challenge, people like Bruce Darling and Dawn Russell when they cross a line – especially if non-ADAPTers are already criticizing them, the almost instinctive reaction is to defend them.

 

 

7.
In 2017, as the Republicans were trying to repeal the ACA, ADAPT mobilized, as did so many other sections of the disability rights community. The situation looked dire. If the Republicans got their way, all kinds of people – due to the institutional bias in the system – would lose access to the waiver services that keep them from being forced into unwanted institutionalization. Waivers are optional services. This means that states do not have to provide them to the people who do have to be offered institutional placement, although they are less expensive and more desirable. They could easily be lost in belt-tightening. If the Republicans got their way, all kinds of people would lose access, or never gain newly needed access, to health care they needed to stay alive or to maintain a basic quality of life. If the Republicans had gotten their way, the disability community would be devastated.
In 2017 the disability community – including Darling and Bascom and Barkoff and Russell – was unified to a greater extent than I have ever seen. We understood the same dire threats to people’s lives and though we fought back using different tactics, we fought back in a coordinated way. ASAN, CPR, NCIL, ADAPT, and CDR were allies.
The rhythm of ADAPT actions increased. They popped up in places that hadn’t seen much ADAPT work, and people traveled to Washington, D.C. more often. More activists were injured. People pushed themselves to the limit. Bank accounts drained. But it was an emergency, and those pictures of activists being dragged out, still chanting, in wheelchairs, holding white canes, doing what ADAPT does uniquely, had an effect.
And then it was over.
We were keeping our eye on the Republicans and their desire to destroy the ACA, but we went back to the old pattern of each working on different things, according to our constituencies’ interests. For Darling and, at least by a certain point, Russell, this appeared to be the DIA. Much of ADAPT appeared to follow suit.
This gave rise to three sets of complaints about the DIA strategy:
• It was too exclusive in focus, essentially defining anyone who worked on other issues instead of or in addition to as inadequately committed to disability rights,
• It was too exclusive of activists. The DIA strategy required a level of commitment of time, energy, and financial resources that many impoverished and disabled activists could not meet, and as they dropped out because they had given all they could, they were accused of inadequate commitment to disability rights. Further, the tactics simply are not equally safe for all people. (Imagine how different the response to the ACA protesters would have been if, instead of the photos being primarily of white people with easily-recognised assistive technology, they had been of young black men who don’t understand spoken language and who walk with difficulty.) Thus the tactics themselves serve as a barrier to an activist corps that reflects the full diversity of the disability community, and
• The tactics – especially direct action protest and giving Capitol Hill staffers’ names and direct email addresses to large numbers of people, including non-constituents, to have them contact staffers with requests and demands rather than having constituents go through the lines established for the purpose – were “too alienating.”
The ADAPTers and others leading on DIA obviously disagreed. They kept going.
The ties holding the disability coalition together began to fray.

 

 

8.
All my training in media activism, back in the days before social media when we were dependent on reporters to get the word out, hammered home one point: it is your job to make it as easy as possible for the media to tell the story we want told, and as hard as possible for them to tell any other story about us.
To that end, we scheduled events that were at convenient times for TV crews to film us and get their stories onto broadcasts; we wrote press releases that were as much like published news stories as we could make them, with the key facts in the lede (the first sentence or paragraph) and the main text written in a straight and “balanced” way, our own positions expressed in the quotes; we thought through the theatre of the event and how text descriptions, still photography and video would convey what we wanted; we made sure our releases were no more than 1 page long so that they would come out of the fax machine whole, and we studied message discipline, or the art of not getting diverted into giving a quote that might serve some alternate interpretation better.
“But some accommodations are very expensive, aren’t they?” a “reporter” might role play with us as if they really wanted to write a story about how hard ADA compliance is on public accommodations.
We would resist the urge to do more than pretend to give her the answer she wanted: “The cost of excluding some members of our society over and over is intolerable. It’s a cost paid in human potential and human lives. There is nothing more valuable than that!” Times have changed – and yet they haven’t. Nobody is working the fax machines any more, and suddenly the media are everywhere because we are our own media. But we still need to make sure that what the audience are seeing is what we intend them to see.
And to do that, we need to understand other people’s perspectives and how to address them.

 

 

The theatre of direct action follows a similar logic. Each photo, each video, that goes out should ideally make it clear what the injustice being done is, and the challenge to that injustice as clear as possible. This begins with what is known as “cutting the issue” – distilling it down into a simple and concrete form – and carries through with all the tactical decisions and the prep work that activists do. The messaging should be on point, whether it is conveyed through signs, chants, speakers or something else.
It should be as easy as possible for anyone who witnesses it to understand the struggle against injustice as the activist group wants it understood and as hard as possible for them to understand it in any other way.

 

 

9.
While there is certainly room for honest disagreement over strategy and tactics, it is worth noting that some of the disagreements over DIA prioritization and strategy have been causing increased friction between those organizations pushing it hard – CDR, ADAPT, and NCIL, the groups where Darling had a major formal or informal leadership role – and others in the community.
On July 20, 2018, for instance, Darling tweeted, “Literally NOTHING in our advocacy interferes in [a pro-institution advocate’s] sisters being where they want.” A number of self-advocates with intellectual and developmental disabilities took issue with this. The sisters in question are almost certainly under substituted judgment. They either have guardians making their decisions on their behalf, or they have not received self-advocacy support to transition effectively from childhood, when family or professionals make the decisions, to adult self-determination. And of course children are automatically under substituted judgment. This is simply the situation many people in the I/DD system face.
While some families work hard to nurture self-determination and to use substituted judgment to help enforce what their loved ones want, in other cases, people may actively want and struggle to move to the community while, because the real decision-makers disagree with them, legally they are “expressing” their “desire” to remain in institutions.
That “literally nothing” in ADAPT’s advocacy will protect a significant number of people with intellectual and developmental disabilities from being forced into institutions comes as no surprise to many of those people; that a man perceived by non-ADAPTers as one of ADAPT’s top leaders – if not the top leader – could say so in public while insisting that that advocacy not be expanded, and not trigger a response by the rest of the leadership, was a blow. It suggested that ADAPT was making no effort to free this group of institutionalized disabled people because it did not care about them rather than because there was a plan in place that simply hadn’t been unveiled yet.
ADAPT – and the IL movement in general from which it was born – is frequently criticized for staying too true to its original core constituency, people with spinal cord injuries, neuromuscular disorders, and cerebral palsy in that order, and the message that the group does not care about people with cognitive disabilities hit home.
It weakened cross-disability unity. It also helps explain why organizations like CPR and ASAN have advocacy programs that diverge from the Darling-led groups’: they take for granted that all people with intellectual and developmental disabilities are part of the disability rights constituency, whether or not CDR, ADAPT, or NCIL agree.

 

 

10.
Why do any of us work in disability rights? For many of us, it starts with a desire to make things better for ourselves – politically or perhaps vocationally, given the dearth of accessible employment in the mainstream. Some may slide in out of an interest in policy or organizing. We may evolve to a desire to make life better for a group of our people, or all of them. We may eventually arrive at a desire to make things better for those coming up behind us. There are other paths.
Bruce Darling and Dawn Russell, as ADAPTers, routinely recommit to the informal ADAPT mission statement: free our people! Our people are to be freed by liberating them from unwanted institutionalization in nursing homes and, perhaps, other institutional settings and by delivering them to lives in the community if that is what they want. The people to be freed are at a minimum people with physical disabilities, and may include all institutionalized people with disabilities. Even without precise unanimity on what it means, though, free our people! is an effective clarifying mission statement and rallying cry for ADAPTers, and it seems clear that, just as the mission of Johnson & Johnson as it faced the Tylenol Murders crisis was to funnel wealth to shareholders, the mission of ADAPT as it faces the Darling/Russell Videos crisis is to liberate disabled people from unwanted institutionalization and dismantle the system that gives rise to unwanted institutionalization in the first place.

 

 

Katie Beckett was a beautiful baby. I’m not telling you much here: all babies are beautiful. She was born on March 9, 1978. At her birth, to the best of my knowledge, she was not disabled, but when she was 4 months old she came down with viral encephalitis. Katie and her family entered the world of disability.
Katie survived her illness, but afterward she needed a ventilator. She was still a beautiful baby, growing up into a beautiful little girl. She was still loved and cherished. And her parents wanted to take her home and raise her, as any little girl – any child – deserves. But she was trapped in the hospital. It’s not that she needed the hospital; in 1978 ventilator care could absolutely be performed safely in the community. In fact, it would have been less expensive to provide the care at home where little Katie deserved to be.
But the funds for her care were available to her only as long as she stayed in the hospital. Her parents could not afford to bring her home. And so Katie Beckett began to grow up in a hospital. A hospital is a great place to be if you actually need the specialized care they offer. It’s also no place for a child to grow up.
Katie’s family fought back. They fought back hard. This was their beloved daughter; she deserved the kind of childhood they were trying to provide her, but she was not going to get it because of the funding system for people with enormous medical expenses that people with good salaries and good private insurance could not possibly pay.
President Ronald Reagan finally stepped in when Katie was three. He spoke about the case at a November 10, 1981, press conference and the next day the Secretary of Health and Human Services waived the requirement that Katie stay in the hospital in order to get the care she needed to survive. A week before Christmas, Katie Beckett finally came home. Those three years, some of the most important years in a child’s life, were gone forever, just as the time anyone spends confined unnecessarily to an institutional setting is irrevocably lost. But there was still time to give Katie much of a normal childhood. And she thrived. By the time Beckett died (at age 34, of an unrelated illness) she had a degree in English and creative writing, had worked competitively, and had applied to graduate school.

 

 

Hundreds of thousands have families have since benefited from Katie Beckett’s parents’ advocacy, raising their kids at home using what are known as Katie Beckett waivers.
But we are still institutionalizing children today. Moreover, as our children graduate or age out of the K-12 (primary and secondary) educational system, they are launched into a world in which adults are institutionalized. Some get their support needs met in the community, in ways that promote self-determination – what the independent living movement calls “independent living” or living without undue external controls. Many, especially those with poor self-advocacy skills or who are believed (rightly or wrongly) to have intellectual disabilities or so-called “severe mental illness” or have unmet communication support needs, have no access to this brand of “independent living.” The promise of freedom the Beckett family secured for our children in 1981 has not yet been realised.

 

 

I hold in my mind a list of names of children and young adults. I know at least pieces of their stories. One is fighting for access to the regular classroom; another has a part-time job at a center for independent living (CIL); a third has just learned to make panini; a fourth is working on a system of alternative and argumentative communication that fits. They are activists and artists, dreamers and lovers, beautiful and cherished children and young adults shining with promise, and what we adults are delivering to them is not a world that will support them well in expressing that promise.
But that is our job as a movement. It is to prepare a world in which our children and young adults, including those with high support needs and those who today are multiply marginalized, take their inclusion in society and the recognition of their full humanity and equality so for granted that they can be careless with them. We are, in short, trying to raise ingrates who have no conception of the lives we today are subjected to and the labor we have invested.
But we are not raising ingrates. We are raising children who can see what’s on the horizon – or what is already in their lives – and are afraid. We are raising a generation who, many with nondisabled parents who are less than 22 years into an understanding of the political realities of disability, are watching us as we work to ensure that they are offered the best futures we can possibly give them.
Whether or not we are conscious of it, the way we conduct the movement is also media work. We need to be making it as easy as possible for these children to absorb the message, you matter. We need to make it as hard as we can for them to internalize a different understanding of their own value. We need to show them that we believe in them, that we love them, that we are doing our best for them, that even when we fail to give them everything they deserve, it wasn’t because they didn’t deserve it enough or because we didn’t care enough to try. We need to ensure that we are doing that for all of our community’s children, including the ones in the camps at the southern border and the ones whose parents are picked up in ICE raids, and including the ones who have already been classified as needing to be controlled rather than as needing supports for self-determination and who are subject to increasingly coercive “therapies.”
And today those of our children who are watching are seeing efforts to advance one minority group at the expense of another – erasing people in the intersection of the two – and to tear apart cross-disability coalitions – erasing multiply disabled people. Is this the best we can do for them? When I run through my list of young people and ask myself how various decisions we make will affect each of them, I hope that it is not.
I have a fantasy of a horde of disabled children boarding school buses, joining their neighbors in groups along the neighborhood streets, being dropped off at school by parents and trusted support professionals, wearing T-shirts with a very diverse group of disabled people drawn on the front and “Disabled adults have my back” boldly printed across their shoulders. 2019 will not be the year that t-shirts like that will fly off the shelves.

 

 

ADAPT members routinely commit civil disobedience, violating the law in order to resist or to call attention to what they consider injustice committed by powerful people. Civil disobedience promotes a very moralistic mindset: it is about the theatrical exploration of good and evil, and about finding power to resist evil, paradoxically, by strategic powerlessness, by highlighting the fact that the power is in the hands of people who misuse it. One of the first rules of civil disobedience is actions have consequences and this rule is applied in a number of ways.
For one thing, the targets, whom protesters are identifying as wrongdoers, are facing consequences in the form of the condemnation of those they oppress. For another, civil disobedients accept arrest, pay fines, risk incarceration, and live with other consequences of their choice to defy the authorities in the name of conscience. Much of the public debate about the videos, and particularly the video of Darling in Representative Eshoo’s office, centered on appropriate consequences. People attempted to balance the scales of justice. How bad was what he said? Has he done other bad things? How much are his wrongs offset by his contribution to the organizations and the movement of which he was a part? Would the same behavior have been tolerated in a different figure? (Here it is worth noting the contrasts with Dawn Russell. How similar or different were their two actions? How very different are the consequences they appear to be facing?) It also focused on ADAPT, whose struggles with patterns of oppression are being discussed openly. How bad are those? And what should happen as a result?
The moralistic response, however, is not the only one available. It’s the usual one, as we often see when organizations are called out. But few people, if anyone, thought in 1982 that Johnson & Johnson deserved to take a $100 million hit. The tainted bottles were from different lots, manufactured in different plants, and all 7 deaths were in the Chicago area, although they had been sold by different stores. It made the most sense to believe the killer had put the cyanide into the bottles and taken them to different stores, leaving them on shelves to be sold. The costs Johnson & Johnson incurred had nothing to do with actions having consequences and everything to do with a savvy understanding of its real goal, funneling money to shareholders, and how to achieve it.
As ADAPTers, Bruce Darling and Dawn Russell had embraced the overarching goal of free our people!, and the more immediate goal of pass the DIA. Instead of discussing what they deserve, the disability community could have asked how best to advance those purposes. NCIL may have done this; they moved faster than is usually possible when weighing someone’s soul and convincing them to accept the judgment. Someone may have said, “For the good of the movement, Bruce, step down,” instead of “Bruce, you’ve got to be a better person.” But that is speculation.

 

 

11.
On June 6-7, 2018, activists were working against the confirmation to the Supreme Court of Judge Brett Kavanaugh. They were doing so for many reasons, but advocates for people with intellectual disabilities – actual or presumed – had an additional concern. Kavanaugh had written a decision (later overturned) in a lower court case known as Doe ex. rel. Tarlow v. District of Columbia. The decision indicated that people with intellectual and developmental disabilities and those with significant unmet communication support needs (and their guardians, if they have them) do not even need to be given a chance to express their opinions before professionals force them to undergo elective procedures – like abortion.
This kind of thinking is dangerous. It threatens to strip a group of people, many of them institutionalized under formal or informal substituted judgment, many of them multiply marginalized and denied necessary supports, of any self-determination, including sexual self-determination, in the face of professional control. More than that, quiet recourse to forced abortion is one way that institutions cover up evidence of rape.
Covering up rape of institutionalized disabled people with little or no recourse to reporting may not be what Judge Kavanaugh intended. But it certainly seemed to some ADAPTers to be a free our people! issue. Darling disagreed.
In response to calls to oppose Kavanaugh, Darling tweeted, “…[W]e are busy trying to convince 24 Democratic Senators and 99 Democrats in the House that Disabled Americans shouldn’t be locked up in institutions…. Being locked up for being ‘too disabled’ is a more imminent threat….” Although ADAPTers have rarely challenged or disagreed with Darling in public, in this case an activist from a different ADAPT chapter attempted to convey her concerns: “In 2007 #Kavanaugh wrote a decision affirming a lower court’s decision that giving nonconsensual surgery to women with intellectual disabilities was totally fine. Two of the three women in the case were given abortions they did not want and were not asked about. Not getting involved in the Kavanaugh hearings felt like another instance of @NationalADAPT not showing up for people with cognitive disabilities. People from my local chapter did things independently. Some with other groups. Some got arrested. But God, it would have been great if national had come out. DIA isn’t the only issue there is.”
Darling accused her of “trolling ADAPT.”
“And for 28 years I have heard disabled folks who aren’t facing institutionalization,” Darling said, “tell @NationalADAPT that there are other important issues to work on and our focus was misguided. It’s perspective. People denied their freedom in institutions arent [sic] thinking about #Kavanaugh.”
The activist challenging Darling in this exchange – and several others challenging him in less visible forums – is a survivor of institutionalization at risk of return. Moreover, while it is true that uneducated, institutionalized, sexually abused women under guardianship without access to basic communication and self-advocacy supports are not contemplating who should be the next Supreme Court Justice, they also are not rooting for specific legislation.
Liz Weintraub, a self-advocate and policy specialist with an intellectual disability who is a survivor of institutionalization and at risk of returning, ended up testifying to the Senate Judiciary Committee about the centrality of access to self-determination and to having people with intellectual and developmental disabilities at the table when decisions are made about our lives. Kavanaugh was confirmed to a lifetime appointment.

 

12.
In 2019, work on the DIA has been a constant drumbeat. Dara Baldwin, a D.C. policy analyst, became part of the public face of CDR’s DIA team. Bruce Darling, Dawn Russell, Baldwin, and other organizers, many of them at the intersection of the Darling-led organizations, CDR, ADAPT, and NCIL, regularly circulated lists of Members of the House of Representatives whose Committee memberships or party affiliation made them desirable to secure as cosponsors. One after another, names were crossed off these lists.
Connections with and contrasts to other movements became the theme of much of the organizing. The bill was reintroduced on Dr. Martin Luther King’s birthday; there were efforts to promote it at the anniversary of the Stonewall Riots and on Juneteenth; and when the Equality Act was passed, Darling noted to lawmakers that as a gay, disabled man, he still didn’t have the meaningful protections the Equality Act was meant to offer him.
Even Money Follows the Person (MFP), the long-time ADAPT priority mentioned above, one of whose most public faces by then was CPR’s Alison Barkoff, was derided as a distraction from the real goals of the disability rights community. MFP is a successful program which has seen nearly 100,000 people successfully transition from large institutions to community-based care. MFP is almost universally loved. It provides better outcomes for participants at lower cost to states. But the program ended. Congress has been dribbling funds into it to keep it from dying, but what it needs is a multi-year reauthorization with full funding. States like Texas and Illinois, which institutionalize large numbers of people, have enormous HCBS waiting lists, and made effective use of MFP, ran out of money at the end of the last cycle, and can’t get going again without a real reauthorization.
In a June 18, 2019, press release, ADAPT said, “The Group has watched as congress [sic] has found the political will to pass other important legislation such as the Equality Act. Now they have signaled an intent to pass H.R. 3253, the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019, introduced by Reps. Debbie Dingell (D-MI) and Brett Guthrie (R-KY) last week, to fund the Money Follows the Person (MFP) and Spousal Impoverishment Protections four and half years. The MPF [sic] program provides monetary incentives to states to offer Medicaid home and community-based options in lieu of institutional and nursing facility level of care. All of this is important legislation [sic] the disability community is not getting the same priority.”
It seemed to some observers as if an ethic of “Work on nothing else but DIA” was being demanded. Julia Bascom, Alison Barkoff, and their respective organizations apparently either did not get that memo, or disregarded it. They continued to work on an array of disability rights issues, as did most of the community.
But there were also the protests, the trips to Washington DC, to go to Representatives’ offices. And whether these were the chapters that had the money to get there or the chapters that were willing to engage in those tactics on those issues, the ADAPTers in the Congressional offices ended up coming primarily from Darling’s chapter, Rochester ADAPT, and Russell’s, Atlantis ADAPT.

 

On June 20, 2019, Rochester ADAPT and Atlantis ADAPT went to the home of Representative Frank Pallone early in the morning, while most of the neighbours were probably still asleep. They were frustrated and angry and exhausted. They had believed Pallone’s support for DIA was assured but, presumably because he was listening to groups of parents and institutional staff who were concerned that institutions not be closed – the same kind of people Darling had assured the previous summer could continue to institutionalize disabled people without ADAPT interference – he was not doing what they wanted.
Specifically, Representative Pallone, the Chairman of the House Energy and Commerce Committee, was in a position to schedule a hearing DIA proponents needed, and thought they had gotten an agreement on, but a staffer had said no.
So activists went to his home before breakfast on a workday. They did not maintain a dignified vigil at a distance, which is one tactic. Instead members of the group climbed onto his porch; they went into his backyard. This is another. (Fair disclosure: I have participated, willingly, in several protests at officials’ homes.)
When pictures went out of Representative Pallone leaving, in the company of police, those pictures could be interpreted in multiple ways. It could seem that Pallone was a coward, fleeing desperate people trying to speak truth to power, as many ADAPTers saw it. But it could also seem that Pallone was being harassed by people with no sense of where the lines are drawn. The theatre of the event was, in other words, at best murky and confused. It was not impossible for the theatre of the action to convey the story Darling and Russell wanted out there. It was also very easy for it to be used to tell a much uglier story in which disabled people did not hold the moral high ground.

 

13.
On July 20, 2019, Ari Ne’eman, who is writing a book on disability rights history, had written a thread arguing that “the near exclusive focus on DIA by some advocates has been a huge liability for the [disability] community.” Ne’eman continued, “The total absence of priority given to MFP, ending subminimum wage [a program which permits some employers to pay workers with disabilities far less than minimum wage], the Keeping All Students Safe Act (which addresses restraint and seclusion of both students [with] disabilities and students of color!) in the direct action agenda is … not good.
“And certain people have been flat out lying to the grassroots that DIA – a bill with no [Congressional Budget Office] score [which would be an attempt to predict how passing the bill would affect the federal budget] and that has never had so much as a subcommittee hearing – would pass easily if not for the treachery of the Democratic leadership.”
“There are DEFINITELY people in institutions and nursing homes today,” Ne’eman asserted, “who would not be if one-half of the focus DIA has received went toward reauthorizing MFP. Beyond that, I’ve heard of offices indicating that they’re actually reluctant to introduce or join new legislation [relating to home and community-based services (HCBS), supports provided in community settings specifically to people at risk of institutionalization] for fear that they’ll be accused by ADAPT of ‘distracting from the DIA’.”
Ne’eman also discussed the historical context of ADAPT work: “The ironic thing is that ADAPT historically has been very good about being strategic about this sort of thing. ADAPT is responsible for helping get MFP established in the first place, and was crucial to getting the Community First Choice State Option in the ACA. The latter has sent hundreds of millions of dollars for HCBS and emerged because ADAPT, NCIL, and other disability [organizations] made a pragmatic decision to turn the Community Choice Act [CCA], their preferred legislation, into a state plan option to get it into the ACA.
“I was in the meeting at the Obama White House where this deal was struck,” Ne’eman recounted. “The disability advocates who crafted CCA weren’t thrilled about turning their national mandate for HCBS into a state option [with] financial incentives …. But they did it because they put actual policy outcomes – getting as many disabled people as possible out of institutions as quickly as possible – over rhetorical purity …. One of the things I always admired about the old ADAPT was the impressive combination of radical tactics and pragmatic goals.”
“Suffice it to say,” Ne’eman tweeted, “that it’s been an open secret for some time that the disability community has an ADAPT problem on Capitol Hill.”

 

When Dawn Russell sputtered into the camera that now is “the most important time in our history,” she is almost certainly asserting that passing DIA would change so much that it is worth the price Ne’eman and others have delineated. It is worth allowing the restraint and seclusion of children with disabilities and children of color – practices that are deeply traumatizing and that contribute to the School-to-Prison Pipeline and to injuries up to and including death – to continue for at least awhile longer, because we are deemphasizing the Keeping All Students Safe Act. It is worth leaving tens of thousands of people in nursing homes and other institutions whom we could have gotten out before DIA could take effect, because we aren’t pushing MFP. It is worth accepting Brett Kavanaugh on the Supreme Court rather than trying to force a different nominee who, while they might be as bad on many issues, did not explicitly believe that people with intellectual disabilities can be stripped of their right even to express their opinions about major decisions affecting them.
Darling certainly appears to believe this. He has publicly called DIA “the grail.” He, like other supporters, argues that it “ensures people with disabilities have the right to live and receive services in their own homes.”
As noted before, though, it wouldn’t have ensured that the 11 children who died when poor infection controls allowed adenovirus to sweep through a facility in Wanaque, New Jersey, in the fall of 2018, could have returned to the community, because they were children. Their parents made their decisions for them. If, in the parents’ judgment, institutionalization was a better choice than HCBS – and parents who place great value on having highly trained professionals available to their children, or who are too busy keeping a roof over their families’ heads and food on their tables to take on the full-time job of managing personal assistants, direct support professionals, as well as overseeing medical care sometimes make that choice – then the outcome will be institutionalization.
DIA wouldn’t have ensured that the indigenous woman who was repeatedly raped and impregnated at the facility in Phoenix, Arizona, could live in her home for the same reason. She has no effective complex communication system; and her family makes decisions about what is best for her.
DIA would not have protected someone like Jensen Caraballo, who was placed in a facility while in foster care. It would not protect someone like Darius McCollum, who was adjudicated to a facility by a judge who was convinced that there was no point in trying robust HCBS.
The Wanaque kids might have pulled it off when they reached adulthood, depending on the nature of their disabilities, but they were ventilator users and would almost certainly have been heavily socialized to comply with staff and other authority figures; some of them undoubtedly had cognitive as well as physical disabilities; and even those who were not automatically adjudicated incompetent would have been stripped of many basic rights and assigned guardians as they turned 18 (something many parents are told needs to happen if they are to continue to “protect” their children’s rights).
Even those who can expect to benefit can also, if they are not among the people regarded as capable of real self-determination, be forgiven for questioning how much. DIA explicitly permits 4-person group homes – small-scale but still congregate facilities with staffing patterns that serve to segregate – as options. Group homes can certainly strive to empower, but they can also be run in very repressive ways. If we are prepared to live with congregation, segregation, and repression even for some of those we are seeking to free at all, it’s not unreasonable for some people to conclude that while they support the bill as a step forward, there is a limit to the price they are willing to pay for its passage.
Moreover, DIA is a different kind of law. We can expect legal challenges to it once it is passed. With Senator McConnell having held open so many positions on the Circuit Courts during the Obama years for the next Republican President to fill, with President Trump having gotten Justices Gorsuch and Kavanaugh onto the U.S. Supreme Court for life, it is far from clear what the bill will actually mean for the people it is intended to free.

 

Responding to Ne’eman’s Twitter thread, openly disabled Congressional aide Steve Lieberman raised concerns about ADAPT’s recent tactics. Lieberman is a 10-year veteran of Capitol Hill and a student of the advocacy game. His take on tactics is vastly different than ADAPT’s.
“There’s no denying that ADAPTers played an absolutely critical role during the Summer of ACA Repeal 2 years ago. And because of that fight, the general public is now far more aware of the importance of protecting Medicaid than it ever was before,” he wrote on July 21, 2019. “ADAPT has also conducted actions aimed at ensuring the FDA at long last finalizes its ban on shock torture devices for human beings – a key human rights issue as well as a longstanding goal of the community. However, in its engagements with Capitol Hill offices recently, ADAPT has not been at its best. Yes, DIA has won cosponsors but has the disability community won friends and allies?”
Lieberman echoed much of the traditional advice about lobbying on the Hill: the etiquette, the importance of constituents, the persuasion rather than the demands. Again, there is room for legitimate disagreement, and protesters and lobbyists frequently go about things differently.
Lieberman also echoed Ne’eman about the things that were not being done, including a Senate Finance hearing on nursing home abuses that at the time he tweeted was imminent. At the time of the hearing, NCIL would be holding its annual conference, with an expected attendance of about 1,000 advocates. And yet nobody was talking about the hearing, which nursing home industry insiders were expected to attend.
But then Lieberman addressed the ADAPT action at Representative Pallone’s home. “So DIA has more than a majority of the House on as cosponsors. Great! It just needs a hearing. Who controls whether or not it gets a hearing? That would be Frank Pallone. Who do you want to persuade and not antagonize? Frank Pallone and his staff, of course! I understand ADAPT had a meeting with Pallone’s staff that went very poorly, and I understand their frustration. Here they are, having reached their goal of getting a majority of the House on as cosponsors, and they’re told by staffers that they won’t be scheduling a hearing. At this point, their beef is with the staffers, not Frank Pallone. But instead of recalibrating by, say, engaging with NJ CILs and other NJ supporters to send emails and make phone calls, ADAPT leaders make a colossal error by showing up at Pallone’s DC residence to raise hell. I have no idea how they obtained Pallone’s DC address. But that action crossed the line. There was still a chance to get a hearing at some point if an effective strategy was used. But by pissing off Pallone at his home, now he’s painted into a corner. He can’t give in now.”
But, argued Lieberman, the damage was worse than that. “I know for a fact that other members of Congress have been made aware of what ADAPT did at Pallone’s house because my boss was made aware of it. He’s not the only one. It should be concerning to all members of the disability community that when members of Congress think about our community, the first image they have right now is people shouting early in the morning at Frank Pallone’s house, crawling up his steps and trespassing on his porch. We can do better. We can do so much better than this.”

 

Others who regularly spend time on Capitol Hill are also echoing Ne’eman’s and Lieberman’s concerns. Disability advocates report that it is harder and harder to get meetings, and that to get them at all, they are needing to reassure Members of Congress and their staffs that they are not affiliated with ADAPT. Since many of them have previously lobbied for DIA, the confusion over whether they were part of ADAPT, which is the group most closely identified with DIA advocacy, is not wholly unwarranted. But to someone unfamiliar with the landscape of disability politics, confusing ADAPT with the Executive Director of a center for independent living (CIL) is actually even easier than hearing “an autism organization” is partnering with the pro-institution forces and assuming the group in question is ASAN (Russell’s error is closer to believing ADAPT is a front for the nursing home lobby).

 

14.
Criticisms that “the cross-disability movement” – an inaccurate description of the independent living (IL) submovement of the disability rights movement, since it is neither the only cross-disability submovement nor the totality of the coalition among submovements that makes up the movement as a whole – is both too white and too physically disabled are nothing new. NCIL has been a target of those criticisms; so has ADAPT. These criticisms reflect both the reality that there has been disproportionately white and “my mind is fine” leadership (with everything that flows from that) and the reality that leaders of color and those with I/DD have been diminished in memory.
Against this backdrop, a top-level leader of three IL organizations and his allies have promoted an approach to passing a single bill that a wide range of people, some within and some from outside ADAPT, have criticized as harmful to the interests of the disability community and in particular to the interests of young children facing increasingly institutional crackdowns, institutionalized rape victims, institutionalized people who have had all their rights stripped from them, and people with a meaningful chance to get out of nursing homes and other institutional facilities who have been denied that option. They have weakened the cross-disability solidarity that was one of the few unmitigated victories of the Trump era. And the bill does not address the needs of all disabled people at risk of institutionalization equally; it prioritizes the interests of those whom the IL movement has historically chosen to prioritize, and it explicitly permits ongoing congregation and segregation under the guise of “community living.”
As these leaders have insisted on an unsustainably grueling pace of direct action, more and more activists dropped out, until the group carrying those actions out was down to two chapters, under the primary direction of two leaders, with access to the funds to keep going. At that point those leaders made tragic missteps.
Darling claims his actions on July 16 were out of character; that is, at a minimum, a matter of intense dispute. Russell has not even bothered to concede that attacking and threatening allies over an unverified rumor that, if true, would not be interpreted by anyone with even a minimal familiarity with disability rights politics and I/DD as being likely about ASAN, and which even Russell explicitly acknowledged at the time might well not be true, was a mistake. The record is less clear there because it is less public, but I have certainly heard large chunks of Russell’s diatribe from both Russell and Darling before – just not in so public a setting.
They have done this in public – in Congressional offices, livestreamed, with the videos left up for weeks before there were even disclaimers. Their actions followed closely on the heels of the events at Representative Pallone’s home. In that case, other legislators, who largely identify more easily with Pallone than with those people who were lounging on his porch as the police escorted him out, will certainly not have interpreted the theatre the way ADAPTers have mostly done. And the series of incidents means there has been real damage to NCIL’s, ADAPT’s, CDR’s, DIA’s, and – because most people are not able to distinguish between disability rights groups – the entire disability community’s reputations.
The thing to ask ourselves, I believe, is what best serves the mission now?
The Darling/Russell Videos were released on July 16, 2019.
The National Council on Independent Living (NCIL) had an annual conference scheduled for July 22-25. By the time the conference began, Darling had been removed as NCIL Board President. He did not present at the conference as he had been scheduled to do. (Reportedly his lieutenant, Dara Baldwin, presented in his place on at least one occasion.) He announced that he was not even attending. (Russell reportedly did attend at least the party.)
ADAPT had one of its twice-yearly national strategy meetings scheduled for July 27-28. The roughly 30 or so ADAPTers who attend agree on the priorities for the next half year. The question in those first days was whether or not Bruce Darling and Dawn Russell would be among them. To maneuver them out in the absence of formal procedures would take skill and determination, but it seemed possible, because some ADAPTers were very angry at the suggestion that brown people at the Southern border, accused of no crime or very minor ones, some with pre-existing disabilities and many becoming disabled during these events, being institutionalized – some in conditions that make Geraldo Rivera’s Willowbrook footage seem tame – should somehow be behind white wheelchair users in a priority list for rights.
It would be almost if not completely impossible to force Darling and Russell out of national ADAPT leadership; not only do they have very public defenders, but the structure just isn’t there. The only likely way for them to stop being some of the leaders whose judgments all ADAPTers are expected to accept, whose lead all ADAPTers are expected to follow, was for them to voluntarily step back.
The same appears to be true of other roles Darling and Russell hold in the community, formally or informally: he at CDR, she at Denver’s Atlantis Community.
It has been argued that by asking, or even allowing, them to step back into the ranks of ADAPT, to take turns serving as “soldiers” in the “scrum” rather than as two of the thirty, or the thirteen, or on a given day the two most powerful ADAPT leaders, is to “leave them behind.” But the amount of power that has been conferred upon these two is no-one’s right. Most ADAPTers never achieve the level of power Russell and especially Darling have been wielding. Certainly if one looks at the role the two have played as architects of DIA strategy, the power they have held over the disability rights agenda as a whole, what is and is not on the table, who does and does not get a seat at the table, to the detriment of other community members, is not a right. It is a strange understanding of “leaving people behind” if it matters more that powerful leaders retain their power than that children not be restrained and secluded, that institutionalized women not be forced into unwanted elective surgeries like abortions, or that tens of thousands of institutionalized people not be left without a way we know we can get them out.
Similarly, it has been argued that a commitment to restorative justice requires us not to even ask that Darling and Russell step back. First, only Darling appears to have committed to any process resembling restorative justice; Russell has demonstrated no awareness that tearing apart hard-won alliances as a Member of Congress’s staffer begs her to stop is even mildly problematic. But even Darling, who has worked with IJ and has committed to a process with Sins Invalid, has harmed vastly more people than the members of those two groups – and restorative justice cannot be demanded as an entitlement by the perpetrator over the objections of those he has harmed. Who has signed off on behalf of those at the concentration camps at the southern border? On behalf of the people whose advocacy work on Capitol Hill has been made immeasurably harder? On behalf of those members of the groups he led, or leads, or who have been passionately committed to passage of DIA and who have now been branded racists? On behalf of the members of the self-advocacy and neurodiversity submovements who were attacked in the second video?
Moreover, the leaders in those videos not only made enormous errors, but they led untrained teams who were unprepared to shut those errors down. These are activists with enormous skill sets – and enormous deficits in tactical preparation. And, unlike many chapters operating almost on fumes, Rochester and Atlantis had the resources to provide robust training to their teams so that what happened at Representative Pallone’s home and in Representatives Eshoo’s and Correa’s offices could have been avoided.
Finally, Darling at least is a student of the norms of ADAPT, and highly skilled at manipulating them to get his own way. Russell’s talents in that area seem more instinctive. Simply expecting other ADAPTers to do better at reining them in, without being provided any additional training in how they use the principles of influence and ADAPT culture to obtain and use disproportionate power, or additional formal procedures so that, like NCIL, ADAPT has stronger methods to defend against abuses of the implicit “rules” which govern ADAPT in practice, is unlikely to work.
To retain Darling and Russell in the national leadership of the disability rights movement, in other words, is to commit to business as usual, to the same problems that the Darling/Russell Videos illustrated so clearly, to the same ways in which the people who have not been historically prioritized by the IL movement will continue not to be, and to the consequences denying those people seats at the table and access to agenda-shaping have harmed them – and the movement as a whole.
To retain them as architects of DIA strategy is to retain a DIA strategy marred by prioritizing who deserves justice now and who should wait, and that is associated in the minds of the legislators we need to reach (as well as many of the disabled people who are being asked to promote it) with aggression, racism, and vicious in-group attacks. At a minimum, I believe the disability community needs to stop pushing DIA, regroup, rebrand, restaff the strategic team, and then move on in a new way.
If we are to serve the mission of free our people! – which, again, is the mission Darling and Russell have committed to as ADAPTers – or even the mission of pass the DIA, much less the mission of disability justice (intersectional justice challenging all the interlocking systems of privilege and oppression, supremacy and dehumanization, together, as one, with priority being paid to the most affected), I believe it is time for Darling and Russell to stop worrying about what the disability community owes them and start worrying about what they can do to serve the interests of the people and the movement they say they have devoted their lives to.

 

There were signs, almost from the outset, that neither Darling nor Russell had any intention of giving up power within ADAPT. Darling’s apology insisted that he had acted in a manner that was out of character; Russell didn’t even bother to apologize. IJ insisted that the closed-door amends process be respected. But that process, in which Darling made amends to proxies for people he had harmed without most people he had harmed even being afforded a chance at an opinion about the process – a disturbing reminder of what Justice Kavanaugh thinks is “good enough” for people with intellectual disabilities – and Russell appears to have not bothered with even that much, is not transparent. It became clear over time that Darling and Russell would be two of the roughly 30 people deciding the ADAPT priorities for the next 6 months, and that the rest of ADAPT would be expected to trust their judgments and skills.
And then, on July 24, 2019, 8 days after the videos aired, an email landed in my inbox. It was signed by Dara Baldwin, and it was the kind of email I had been getting for months: lists of instructions about what to do next on DIA.
At that moment I realised that Darling and his allies were not even making any pretense that they would abide by the decisions or listen to the counsel of the other ADAPT leaders, that group whose consensus decisions they insist they are bound by. They had made their decision that it would be business as usual, that they would retain the same authority they have long had, and they would do it not by persuading their colleagues that this was the right way to proceed, but by employing the Heat of the Moment and Personal Loyalty norms. They would just continue to behave as if nothing had changed, and trust that, whatever cosmetic alterations the group went with, it would not challenge them substantively, any more than it had challenged Darling substantively when he announced which institutionalized disabled people ADAPT was making no effort to free, or which institutionalized disabled people’s needs and perspectives were worth taking seriously.
As much as I have loved being an ADAPTer, as desperately as I wanted to continue to do civil disobedience work with the kinds of people one meets at an ADAPT action, I will not follow leaders I trust as little as I trust the people who used those moments in Representatives Eshoo’s and Correa’s offices to harm the community – and who have, I believe, established a history of no accountability for problematic behavior. I resigned from ADAPT.

 

15.
On July 25, 2019, the awards banquet at the NCIL conference was underway. It had been a challenging conference, as participants struggled to come to terms with the fallout from the Darling video, but for a moment they were celebrating. The awards for current work had been handed out, and Colleen Starkloff of the Starkloff Disability Institute was preparing to present Marca Bristo, the Executive Director of Access Living, with a lifetime achievement award.
At some point during Starkloff’s speech, a protest began. A group of disabled people of color and their allies silently held up signs.
“America is the land of immigrants.”
“Know me, not my skin.”
“Libertad y justicia [freedom and justice], not promises.”
“Never again para nadie [for anyone].”
“To all disability organizations, disabled people of color demand change. Not words and diversity ‘plans/statements’.”
“When we demand liberation, we demand liberation for all.”
“No one is free, until everyone is free. Disability leadership must include disabled people of color.”
“We are tired of listening sessions. We demand action!”
“Disabled black and indigenous people of color demand action, not just words.”
Starkloff continued with her tribute to Bristo as if the protesters were not there.
And then it was Bristo’s turn. Bristo did acknowledge the protesters. “Before I say anything else, I would like to acknowledge my colleagues who are in the audience here. And say to you, ‘The people, united, will never be defeated.’ I respect your signs, I respect your protests. And I hope that, and trust that, my NCIL family, will deliver upon the promises that they have made. She then turned back to her recollections and achievements.
In Bristo’s telling, when women told men that they had run NCIL long enough, things promptly changed. “The night before, the NCIL election, that year. Somewhere around ’85, convened a group of women — she’s passed notes around, please come to my suite at 7:00 tonight. And we didn’t know what she had up her sleeve, but we showed up. And Sharon’s vision, was to run a woman’s slate, because up until then, the guys had been running the show, no offense to my male friends in this room, who I love and respect; but women had been behind the scenes doing a lot of the work.”
When blind people told wheelchair users they were not getting access, “they walked out. And, NCIL, took that seriously, and began the process, long before, other non-blindness organizations did, to put in place a policy for reasonable accommodation not just for that disability; but for others.”
The message was clear. If you want full equality within the IL movement, just ask, and you shall receive. But this is not the experience of disabled black and indigenous people of color, who have been asking, and were told that the message from the dais this year would be a racist one. It is not the experience of people with I/DD, many of whom still do not have even the most minimal access to the benefits NCIL offers.
Bristo talked about the power that she and others had found in the movement, the community, and the purpose. She talked about the need to do better (on race, though not on cross-disability issues). Many of us watching around the country believed Bristo would invite the protesters onto the stage and hand them the mic, or that the NCIL staff or board members would ask her to, but Bristo – who, it should be acknowledged, had mentioned that she was on what appeared to be an unfamiliar amount of pain medication due to the rigors of travel during cancer treatment – kept talking.
And all the time the protesters stood or sat silently, with somber dignity, their theatre clean and clear, their message, their demand, their challenge to the history Starkloff and Bristo represent one of truth to power, and never fully addressed. It was a stark contrast to the performances seen 9 days earlier on the Darling/Russell videos.
Bristo explained to the white leaders in the room what she believes racial justice demands of them, based on her experiences and achievements in the past, and the disabled leaders of color and their allies who came prepared to lead us into the future waited silently for her to be done.
Finally, the event was over. Bristo handed the microphone to Sarah Launderville. Launderville offered the protesters a chance to speak. They did not take it.
On Facebook, commentator Maud Steyaert summed it up: “We’ll pass you the mic when the mic is dead.”
Launderville read the signs aloud for anyone who could not read them. And the conference attendees moved on to the next order of business.

 

Where will we be as a community as we celebrate the 30th anniversary of the ADA next summer? Will we have managed to strengthen the bonds of trust and inclusion with those we have marginalized, or will attacks on one another from national disability rights leadership still seem like business as usual?
How much longer will people of color, immigrants, and people with intellectual and developmental disabilities be willing to maintain a community held together by shared ideals, when those ideals are so often betrayed in practice? We are stronger together; but when the strength consistently flows from the most marginalized among us up the hierarchy, and is not reliably returned, at some point the divisions that exist in the community will tear us apart.
And how soon will our community be able to raise a generation comprised entirely of children who can take for granted that they will grow up included, educated, supported in their self-determination, and with seemingly limitless horizons, who never have to look at the people around them and see a failure to recognize their humanity, much less their value?