In the waning moments of the Friday night debate before the 2016 New Hampshire primary, Senator Hillary Clinton ended her closing statement by drawing a distinction between the fight against income inequality and the battles against other forms of inequality, like “the continuing struggles that Americans face with racism, with sexism, with discrimination against the LGBT community, with new Americans, with people with disabilities.” This kind of framing had become a feature of her stump speech, but that last clause was new. I remember rushing online to talk to friends in the disability community. We were buzzing with excitement. Just hearing the word “disability” in a presidential debate felt new and important.

During this election cycle, with one important exception, disability has been foregrounded as a major issue in Democratic Party presidential politics for the first time. Multiple candidates released credible disability policy plans. I characterized each one as the best presidential campaign document on disability I’d ever seen—until the next candidate built on the previous one and released something even better. What remains unclear is how this will play out not just in the campaign, but in the next Democratic administration, whoever and whenever that is. Democrats have learned that left-leaning disability activists are increasingly organized in both formal and informal communities. They—or we, because I am both disabled and a parent of a disabled child—want to be heard. Will the next president listen?

I’m worried that the answer is no. That exception is Joe Biden. His campaign has not released any new policy on disability. His messaging around disability remains stuck in the past.

In the latter half of 2019, Democratic presidential campaigns started to publish their disability plans. Not all of them were great, but the good ones were exceptional. We need plans that recognize the breadth of disability-related needs across diverse aspects of society, along with specific ways that the federal government might help meet those needs. Moreover, I want to see candidates prioritize listening to advocates who are themselves disabled rather than parents or outside experts. For example, I’m disabled (dyslexia, severe depression, anxiety), but as a cis-white man with a PhD who entered the disability community as the parent of an autistic boy with Down syndrome, it has historically been pretty easy for people like me to get attention from politicians. We’ve seen campaigns hiring directly from the disability activist community, just as they do from other justice-oriented groups. We’ve also seen campaigns finally understand that disabled Americans are the largest minority group in the country (and the world), and that our issues are both specific and stretch the length of society.

In August, Kamala Harris released a credible disability policy plan. In early November, Pete Buttigieg put out a comprehensive 19-page document that may have been the best disability policy plan ever released by a major presidential candidate, a distinction that lasted only until Julián Castro offered an even richer document a few weeks later. Castro applied his campaign’s expertise in intersectional justice to disability, demonstrating that the needs of disabled Americans go beyond the standard—and critical—issues of employment, health care, federal entitlements, and education. Castro’s plan included rigorous enforcement for community-based living, accessible housing (fitting for a former HUD secretary), and, perhaps most importantly, changing some of the traps that keep disabled people both in poverty and out of marriages to continue to qualify for benefits.

Castro’s top spot didn’t last long. As Sara Luterman wrote in The Nation, Elizabeth Warren’s argument that “all policy issues are disability policy issues” offered an even more holistic approach to identifying the optimal ways that the federal government can make America more equal for disabled Americans. And then along came Bernie Sanders, whose 2016 campaign never responded to my queries on disability issues. Before the Iowa caucus, the Sanders team published a plan that somehow exceeded Warren’s in depth and ingenuity. The plan opened with the basic principle, “Disability rights are civil rights,” and then over 30 pages offered creative solutions and arguments based in fundamental moral principles to wield executive power to make America more inclusive. Best of all, these plans all emerged out of consultation with a diverse pool of leaders in the disability community. They built on each other, with each raising the bar for what might be a newsworthy set of policy goals related to disability, which then subsequent campaigns cleared. We’ve come a long way from my exclamation of delight to just hear Clinton say the word “disability” on a debate stage.

Except that we’re now looking at Joe Biden, whose campaign seems not to have learned the lessons of the last four years, but continues to rest on the laurels of important, but now decades old, disability legislation like the Americans with Disabilities Act.

A full accounting of the rise of the disability rights movement is a decades-long story featuring scores of organizations and hundreds, perhaps thousands, of leaders. Even just looking at presidential politics would require starting in the late 1960s or ’70s, with a seriously scaling up during the ’80s with the efforts that lead toward the passage of the Americans with Disabilities Act in 1990. In 2008, the Obama team formed what I believe to be the first disability policy working group for a presidential campaign. Many of those same people worked in the Obama administration and were involved during the Clinton campaign, with particular successes convincing the policy leaders to spend as much time listening to self-advocates as parent-oriented groups when it came to their autism policy. Still, Clinton largely focused on employment when it came to disability, a far cry from the more sweeping plans of today.

Between 2016 and 2020 two things happened that I think have chiefly, but not exclusively, driven this change. First, during the last campaign, the most connected elements of the disability community came together under the loose rubric of the hashtag #CripTheVote. The hashtag community—which included regular chats, blog posts, and other forms of virtual organizing—provided a focal point specifically on Twitter for disabled people to connect, discuss, and ultimately magnify their voices by speaking in something closer to unison. Formed by Alice Wong, Andrew Pulrang, and Gregg Beratan, #CripTheVote made disability as identity and community visible to other groups and political campaigns. Both Elizabeth Warren and Pete Buttigieg participated in #CripTheVote chats this year.

It’s easy for people to dismiss online activism as somehow fake, or at least not significant. When it comes to disability in particular, that’s a mistake. Twitter is the most accessible real-time conversation. It is not perfectly accessible, but its text-based public nature allows people to talk to one another who have radically different modes of interacting with the world. People who have difficulty leaving their homes for reasons of physical or social disabilities, people who are blind or deaf (or both), who do not speak verbally and communicate by typing (regardless of appendage used to type), and those with other disability-related access needs can all use Twitter to talk to each other. I have been in wildly accessible physical spaces, with captioning, ramps, sign, and warnings about a lack of scent. It is possible to make accessible spaces, but Twitter brings us together by design. It’s a space, therefore, where the disability community can manifest as a powerful constituency. And it doesn’t hurt that both journalists and political operatives also hang out on Twitter.

But it’s not just virtual organizing that’s shifted left-wing perceptions of disabled Americans. During the summer of 2017, it looked like the Republican Party was not only going to repeal the Affordable Care Act but was also fixated on turning Medicaid into a block-grant program (they remain obsessed with this). Numerous disabled groups organized public protests, taking to the Senate floor and staging acts of civil disobedience. The cameras rolled as disabled protesters were dragged, bleeding and chanting or handcuffed to their wheelchairs, out of the Capitol.

ADAPT had been staging direct actions for years. The group started protesting inaccessible buses and would simply roll their chairs in front and behind the buses, then stop until they were arrested, but they weren’t well known even in other civil rights communities. Captivated by the story, outlets began interviewing the leaders behind the protest, introducing the nation to people like Anita Cameron, who has been participating in actions for 40 years, with over 130 arrests. In the media, the activists were transformed from nameless individuals protesting to well-known activists to movement leaders. The Center for Popular Democracy provided another space for disabled activists to organize protests and coordinate messaging, as of course did numerous other disability organizations around the country. Every state has a Protection and Advocacy organization that is nonpartisan but allowed to lobby and organize around policy. Protecting Medicaid was an urgent call to action, and the P&A network gave activists state-by-state hubs around which to organize targeting specific legislators.

There were too many groups involved in saving Medicaid to recount here, but one new organization stands out, Little Lobbyists. Too often, parent organizations seek the limelight and the big funding, often at the expense of self-advocacy groups. Elena Hung, the mother of a disabled daughter, found a way instead to organize parents in solidarity with both their children and the larger disability community. They came to national attention during the 2017 ACA protests, and have remained involved. Elizabeth Warren recently released a video of her meeting with Xiomara, Hung’s daughter. Nancy Pelosi and several other representatives invited Hung and other leaders from Little Lobbyists to the most recent State of the Union address.

As we’ve entered 2020, then, disabled activists and allied organizations are integrated in both the insurgency and establishment within the Democratic Party.

And yet, as the dust settles from the last 14 months of this endless primary season and Super Tuesday results finalize, we see some of our gains being leeched away. Biden looks poised to seize the nomination. I have spoken to many different disability activists who were consulted by Castro, Warren, Sanders, and other campaigns. None have had substantial interactions with Biden, and there is no expectation that a comparable disability policy document will be forthcoming from the campaign. They have not formed a disability policy team nor performed visible outreach to the disability community that helped saved Medicaid.

I reached out to the Biden campaign to ask them about their policy plans and whether they were consulting any members of the disability community. Jamal Brown, national press secretary for the campaign, said that Biden “will release a plan that builds on those gains by restoring essential services and protections gutted by Donald Trump, advances critical investments, and ensures the federal government lives up to its commitment for people with disabilities—in health care, education, housing, and across the board.” They did not respond to follow-up queries about more specific timing. Brown also touted Biden’s achievements with “Rehabilitation Act of 1973, the Fair Housing Amendments Act of 1988, the original Individuals with Disabilities Education Act in 1975, and the landmark Americans with Disabilities Act in 1990.” This is an admirable record, but I’ve been concerned that when Biden does talk about disability, he doesn’t demonstrate growth beyond those bills of the 1970s and ’80s.

For example, Biden has been admirably forthcoming about his stutter, his own disability, but the disclosures have not prompted a broader exploration of disability culture. Instead, during a CNN town hall event, he said that “stuttering is the only handicap that people still laugh about.” That’s just not true. The current disability page at the Biden website, as Luterman has pointed out, is just a stub with four short paragraphs pointing to other sections (education, justice, older Americans, and reforming the ACA). When Biden met Samuel Habib, a disabled college student in New Hampshire who interviewed most of the Democratic candidates, Biden confused the ADA for IDEA (a core education bill), then reached out to stroke this adult man’s face as if he were a pet. Habib told Pulgrang, “I felt like he talked down to me. And I was mad that he touched my face. Because I have a disability and use a Tobii communication device, he was perceiving me differently than another 20-year-old. As not being smart.”

The history of the disability rights movement is full of paternalism like this, but this present moment demands so much more. It’s troubling to see the Democratic base coalesce around the one major candidate who seems stuck in 1990. We’re in the 30th anniversary year of the ADA. It was a great bill, but the challenges of 2020 require a different approach.

And yet I am optimistic that on the American left, members of the disability community—whether they are online, protesting on the streets, or running for office themselves—are organized and doing everything we can to work with our leaders in building a more just society. And if politicians don’t want to listen, we’re ready to make as much trouble as it takes to be heard.