Red Tape and Unreturned Calls: Caucusing in Iowa With a Disability

She received no specific information about accommodations until Jan. 20, just two weeks before the Iowa caucuses.

That information, in an email from her precinct chairwoman that Young shared with The New York Times, was that she should arrive two hours early to secure one of “a limited number” of seats — and that she could skip the line only if she had preregistered by a deadline three days past.

On Saturday, she emailed Amanda Koski, the Iowa Democratic Party’s new disability director. She is waiting to hear back.

“If I had not started looking into this in September, and again in December and January and now — if I had shown up and there was a long line, I would have had to turn around and go home,” Young, 39, said.

Talk to Iowans with disabilities and you will hear the same story over and over: a nightmarish experience in 2016, and repeated pleas that bring only vague assurances that 2020 will be better.

The state Democratic and Republican parties say they have worked hard to make it so. The Democrats have an online form for people to request accommodations by Monday; the Republicans list a phone number, an email address and a Friday deadline. But they have publicized the processes perfunctorily if at all.

The Democrats released their form just this month, with a tweet saying they were “excited to announce” that they were offering an accommodation request process “for the first time ever.” Asked whether the Republicans had advertised theirs, a spokesman, Aaron Britt, put the onus on advocates.

“The disabilities groups are really good about making sure they get out our process,” he said. “If an Iowan has a disability but they want to be able to caucus, it’s pretty easy for them to find out what exactly they need to do.”

Yet in a state where some 300,000 registered voters have disabilities, the Republicans had received one accommodation request as of Friday, according to Britt. Koski said the Democrats had received about 160. Some additional requests have gone to local officials: Judy Downs, executive director of the Polk County Democrats, estimated that she had fielded two dozen.

Caucusgoers said they had struggled to navigate the request processes, or hadn’t known they existed until recent days. Even those seeking simple accommodations — a chair, for instance — described a mass of red tape and unreturned calls.

Because of complex regional pain syndrome and a respiratory disorder, Anna Phelps, 43, can’t walk long distances, especially in cold weather, and sometimes needs to lie down right away. She completed the Democrats’ form on Tuesday — asking for a parking spot near her precinct in Waukee, a place to lie down if necessary, and a chair — but has gotten no response beyond a “request received” confirmation.

Laura Smith, 30, a Democrat in Des Moines who has multiple sclerosis, has also struggled to get a guaranteed chair and expedited entry. Initially, Downs connected her with a precinct chairwoman who said the accommodations would be available, but Smith then learned she had misidentified her precinct. She emailed her address to Downs on Jan. 20 to confirm the correct location and has heard nothing since.

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And for Jim Omvig, 84, a Republican who is blind and has severe neuropathy, no accommodation is possible: He is too ill to leave his home, and caucuses don’t allow remote participation or proxies.

“Maybe they feel like they’re being inclusive, but I think they’re really ignoring a lot of underrepresented people,” Jane Hudson, executive director of the advocacy and legal services group Disability Rights Iowa, said of the Democrats, who are getting most of the attention because the Republicans don’t have a competitive race. “The disability community really exemplifies how the party says they’re going to be doing things and then don’t really do things.”

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The Democrats say they are doing their best and have made great strides since 2016.

“This year’s caucuses will be the most accessible ever because of the tireless work of disability activists and the groundbreaking changes the Iowa Democratic Party has put forth,” said Catherine Crist, chairwoman of the party’s disability caucus. “While our work is far from finished, our yearslong effort to shift the culture and expand access for people with disabilities has borne historic progress.”

In response to a detailed explanation of the criticisms, Mandy McClure, a spokeswoman for the Iowa Democrats, said they had “made it easier for Iowans to request accommodations, get in the room faster and caucus at a site that’s more convenient to them,” and also hired an “accessibility outreach team.” But according to Disability Rights Iowa, which has corresponded with party leaders for a year, that team — led by Koski — was supposed to be in place in the fall and wasn’t until this month. (McClure gave no on-the-record comment on the timing.)

Britt, the Republican spokesman, gave a similar account. “Nobody cares more about making sure that every Iowan can participate that wants to do so than the state party,” he said.

Advocates said these statements were as upsetting to them as anything else: evidence, in their view, that party leaders wanted credit for making caucuses accessible but had tried only halfheartedly to actually make them so.

“What can be really frustrating is the amount of verbal pandering that both parties have done, saying that oh yes, they love people with disabilities in their party, they want to be inclusive, especially of veterans with disabilities — and then they drop the ball this hard,” said Annie Matte, voting outreach coordinator at Disability Rights Iowa, who is trying to help others get accommodations while struggling to get her own: She has severe migraines that can be triggered by loud noises and bright lights, and she needs a dark, quiet room available if that happens.

Part of the problem is out of the state party’s hands. Because of security concerns, the Democratic National Committee rejected a proposal to let people caucus by phone. And without a remote participation option, caucuses are inherently inaccessible.

You have to get to a specific room at a specific time and stay for an hour or three. You can’t necessarily take a bathroom break, an obstacle for people with digestive diseases like Crohn’s. Seats are scarce, caucusgoers have to physically realign as nonviable candidates are eliminated, and many precincts are overcrowded, endangering people who use wheelchairs or are immunocompromised.

“We can continue to slap Band-Aids on caucuses,” said Reyma McCoy McDeid, executive director of the Central Iowa Center for Independent Living. “But ultimately, we’ve got to reach a point where we come to terms with the fact that the process excludes people and creates barriers to participation, end of story.”

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CICIL is organizing a Democratic satellite caucus: an alternative to official precincts that the DNC authorized after rejecting the call-in proposal. (There is no satellite option for Republicans.) McCoy McDeid said it would remove many barriers, starting two hours early, providing food and including activities for children. A room will be available for people who need to lie down, and another will be kept quiet and dimly lit for people with sensory processing disorders that make the hubbub of a caucus overwhelming.

But even this will be inaccessible to some people, including those who are severely immunocompromised, too sick to leave home or far from Des Moines. And the task of organizing satellite caucuses has fallen largely on the Iowans who need them: the very people least able to spend that time and energy.

One of them is Emmanuel Smith, who has osteogenesis imperfecta, a disorder that causes bones to break easily. He has chronic pain and fatigue that sometimes make it hard to get out of bed, let alone caucus for hours.

In 2016, he said, it took him an hour to get to his precinct because the sidewalks weren’t shoveled and he had to rely on paratransit. When he arrived, the room was so crowded that there was no clear route for his wheelchair. He spent the evening fearing the slightest bump from a fellow caucusgoer, which could have caused broken bones.

Smith, 30, has a support network and expertise that many don’t: He works for Disability Rights Iowa. Even so, he said, planning a satellite caucus in his building has meant hours of frustrating work, trying to clarify logistics, unsuccessfully seeking help from the Iowa Democrats to advertise the caucus and requesting digital versions of forms because he can’t write by hand.

“I’m doing this all because I have chronic pain and fatigue, so the idea that I now have to take on all this extra effort is just really absurd to me,” Smith said. “It tells me that I’m expected to earn my place, and that the average caucusgoer is welcome, but people who might struggle to physically attend are going to have to really show they want it.”

A theme that came up repeatedly in interviews with caucusgoers and advocates was how long action on accessibility was postponed. The problems with the 2016 caucuses were hardly a secret. But the new accommodation process was developed only in the past year and made public in the past month.

Some local officials have worked to increase accessibility further. Downs, the Polk County Democratic leader, said her team had focused on preventing overcrowding, including by surveying people who caucused in 2016 and moving problematic precincts to larger locations. The county party has spent tens of thousands of dollars to rent accessible facilities, she said, and it is providing chairs to precincts that don’t have enough.

But this, too, has only happened in the past year. The surveys started in March, Downs said. And a result has been last-minute changes to caucus locations, meaning people secure accommodations at one location only to have to redo the process somewhere else.

“It’s a missed opportunity that the conversation was not picked up after 2016,” McCoy McDeid said. “The natural consequence is there’s been a lot of rushing, and you can’t rush accessibility and inclusion. You’re only going to end up frustrating people.”

This article originally appeared in The New York Times .