Wisconsin Watch is a nonprofit and nonpartisan newsroom. Subscribe to our newsletter to get our investigative stories and Friday news roundup.

Walmart, the largest retailer in the United States, is no longer selling Milwaukee Tool-branded gloves on its online marketplace  — responding to allegations that a subcontractor for the Brookfield, Wisconsin-based tool company relied on forced Chinese prison labor to manufacture certain models of gloves. 

“We looked into the allegations regarding the gloves in question, and we made a decision to de-list those from the marketplace,” Kathleen McLaughlin, Walmart’s chief sustainability officer, told shareholders during a virtual meeting on May 31, according to a transcript reviewed by Wisconsin Watch.

In a follow up letter to a shareholder, a Walmart official confirmed that the company removed the gloves from its third-party platform, blocked future sales and does not sell the branded gloves in its stores or on its website.

“Walmart does not tolerate involuntary prison labor in its supply chain, even when allowed by local law,” Blair Cromwell, a Walmart spokesperson, told Wisconsin Watch in an email. “Our Standards for Suppliers prohibit it. We find such allegations very concerning and take action to address them.”

The confirmation to shareholders came months after Chinese exile Shi Minglei, who now lives in Minnesota’s Twin Cities, launched a public campaign to pressure Milwaukee Tool to stop sourcing gloves allegedly made under grueling conditions at Chishan Prison in China’s central Hunan Province — and to urge giant retailers such as Walmart, Amazon, and The Home Depot to stop selling the gloves or helping third parties do so. 

Shi alleges her husband, imprisoned human rights activist Cheng Yuan, has been forced to use a sewing machine to produce goods at the prison for up to 12 hours a day. Shi said she could not verify he was making Milwaukee Tool products but said she heard from former prisoners of Milwaukee Tool’s production at the prison. 

Walmart confirmed its removal of the gloves weeks after Wisconsin Watch investigation found additional evidence that Chishan prisoners were paid pennies to make work gloves bearing the iconic brand of Milwaukee Tool, a company with a nearly 100-year history in Wisconsin.

A supplier for Milwaukee Tool subcontracted work to the prison, two former prisoners told Wisconsin Watch. A self-identified salesperson of the supplier, Shanghai Select Safety Products, said it manufactured the majority of Milwaukee Tool’s work gloves. And regulatory filings show Shanghai Select was contracted to manufacture “Performance Gloves” for a subsidiary of Milwaukee Tool’s parent company.

Lee Ming-che, a renowned human rights activist who spent nearly five years in Chishan Prison, verified four types of Milwaukee Tool gloves he made while earning the equivalent of about 48 cents a day during 90-plus hour work weeks: Free-Flex, Demolition, Performance and Winter Performance.

Milwaukee Tool has not responded to Wisconsin Watch’s questions about how it investigates allegations of human rights abuses within its supply chain, but it says it has “found no evidence to support the claims being made.”

“Milwaukee Tool regularly conducts a complete and thorough review of our global operations and supply chain,” spokeswoman Kaitlyn Kasper said in an email July 13, adding that the company has “strict policies and procedures in place to ensure that no authorized Milwaukee Tool products are manufactured by using forced labor.”

Wisconsin Watch reporting spurs congressional investigation

The Wisconsin Watch investigation has prompted a bipartisan congressional investigation into Milwaukee Tool’s supply chain practices . 

In a July 10 letter to Milwaukee Tool Group President Steve Richman, U.S. Rep. Chris Smith, R-New Jersey, chair of the Congressional-Executive Commission on China, and U.S. Sen. Jeff Merkley, D-Oregon, commission co-chair, wrote that the use of forced Chinese labor violates international human rights standards, China’s international obligations and U.S. law.  

“We raise these concerns after reading an investigative report by Wisconsin Watch which detailed how political prisoners in Chishan Prison were forced to work against their will, with little pay, to produce gloves for your company,” said the letter, which outlined questions for Milwaukee Tool to answer.

“We understand that Milwaukee Tool may have strongly worded policies against the use of forced labor, as do most every company with global supply chains, but the evidence in this case is very compelling,” the lawmakers wrote. 

Speaking July 11 at a commission hearing called “Corporate Complicity: Subsidizing the PRC’s Human Rights Violations,” Smith called the findings from the Wisconsin Watch report “very, very damaging.”

A senior Department of Homeland Security official said his agency is examining the link between forced prison labor in China and products shipped to the U.S., but he did not specifically mention Milwaukee Tool.

“We have our Homeland Security Investigation agency, including through their presence at our embassy in Beijing, investigate and look into those kinds of issues,” said Under Secretary Robert Silvers, calling a lack of transparency into the Chinese system — and particularly its prisons — a challenge that regulators and “companies who want to do the right thing” must confront. 

Campaign prompts Walmart action

Shi’s campaign targeting Milwaukee Tool and its vendors caught the attention of the Business and Human Rights Resource Centre, an international organization tracking allegations of human rights abuses in the private sector. It urged the companies to respond. 

Also taking notice: Seventh Generation Interfaith, a Milwaukee-based investment coalition that manages $18 billion in assets and focuses on socially responsible investing, according to Christopher Cox, the group’s executive director.

Missouri-based Mercy Investment Services, one group member, engages with Walmart and other companies about preventing human rights abuses in their supply chains. 

Caroline Boden, Mercy’s director of shareholder advocacy, raised the question during the May 31 shareholder’s meeting that prompted McLaughlin of Walmart to confirm that the company had pulled Milwaukee Tool gloves from its marketplace.

Boden welcomed that public confirmation.

“It’s a great way just to raise salient material issues both to the company and to other shareholders,” she told Wisconsin Watch. 

Mixed responses from Amazon, The Home Depot

In May, Shi emailed a link to Wisconsin Watch’s investigation to Amazon CEO Andy Jassy and urged his company to halt sales of the Milwaukee Tool-branded gloves on its marketplace.

An Amazon Executive Customer Relations Team representative confirmed to Shi that Jassy received the letter and that the “corresponding department” would review it as Amazon “takes a serious look at these problems,” according to correspondence Shi shared with Wisconsin Watch.       

An Amazon spokesperson declined to comment to Wisconsin Watch. 

The Home Depot, Milwaukee Tool’s major distributor, said its internal investigation did not substantiate the allegations against Milwaukee Tool.

“When we learned of the allegations against Milwaukee, we immediately investigated them,”  spokesperson Beth Marlowe wrote in an email to Wisconsin Watch. “We have not found any evidence that the Milwaukee gloves sold at The Home Depot are made with forced labor.”

The models of gloves allegedly made with forced prison labor continue to be sold online at Amazon and by The Home Depot.

More scrutiny of big companies 

Boden said her organization will continue to monitor Walmart’s practices and would like Walmart to share details of its internal investigation regarding Milwaukee Tool.

If the company decides to put the gloves back on the market, she wants assurances that they are free from prison labor.

Meanwhile, the Congressional-Executive Commission on China plans to continue scrutinizing Milwaukee Tool. In their July 10 letter, Merkley and Smith told Richman that the commission is “compiling information for future reports and a congressional hearing where we may request your testimony.”

Christen Dobson, senior program manager with the Business and Human Rights Resource Centre, welcomed such scrutiny. 

“We believe it’s important for the company to be transparent,” Dobson said. “It’s a space where there’s a push for greater transparency and accountability related to human rights harms.”

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

Walmart pulls Milwaukee Tool gloves allegedly made by Chinese prisoners is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit and nonpartisan newsroom. Subscribe to our newsletter to get our investigative stories and Friday news roundup.

The tip came into Wisconsin Watch: Milwaukee Tool, an internationally recognized brand, was using forced prison labor in China to produce work gloves. 

Tackling the story was tricky. The person who knew what was happening in Chisan prison was also the wife of a dissident imprisoned there. A recent immigrant living in the Twin Cities, Shi Minglei feared for herself, their daughter and her husband Cheng Yuan behind bars halfway across the world. 

And she did not automatically trust me. I am a Chinese national. I am also a fellow for Wisconsin Watch, a graduate of the University of Wisconsin-Madison with a master’s degree in journalism. I needed first to prove to Shi that I was not a spy and that she could trust me to tell her story. 

I told her that I had covered human rights activists for The Guardian’s Beijing bureau. In 2017, I reported the crackdown on human rights lawyers and activists across China. Their wives became invisible advocates of human rights in China for those languishing in prisons. I told her that as a reporter, I was approached by Chinese plainclothes police who questioned my loyalty to the country and what I reported on.

Shi decided to trust me and allowed me to report the story. That started a months-long quest to find out: Were the allegations of forced prison labor true?

I talked to a renowned human rights activist who had been incarcerated in Chishan prison in central China. Lee Ming-che told me about the grueling working conditions and excessive overtime he had endured over nearly five years of imprisonment. The types of work gloves and the name of the supplier are etched in his mind.

It was 9 p.m. in Madison, and we talked over Zoom. Lee coughed from time to time at his home in Taiwan. He said he had developed a chronic dry cough after inhaling too much fabric dust working in the prison factories.

Before I reached out to Milwaukee Tool, I amassed a lot of evidence. I verified the name of the subcontractor, Shanghai Select Safety Products, through prisoners and in regulatory filings.

Milwaukee Tool declined to answer detailed questions, saying it had investigated the claim but providing no evidence of what it investigated or found. The company issued blanket denials to our questions. 

I will admit, I was furious. How could Milwaukee Tool stand silent against such detailed allegations? And how has the giant corporation, in practice, upheld its policy against the use of forced labor? 

I continued to amass evidence. Another former inmate who could verify Lee’s story agreed to talk to me. We decided not to publish any identifying details, and we agreed to use a pseudonym, Xu Lun, for his safety. Xu’s narrative was nearly identical to Lee’s. Both said inmates were subjected to discipline, including beatings and banning family visitations, when they failed to get the work done on time. 

I attempted to purchase gloves on China’s version of Amazon. By talking with third-party vendors, I confirmed two suppliers are making work gloves for Milwaukee Tool. One of them is Shanghai Select Safety Products. 

Later, I made contact with a self-identified salesman for Shanghai Select Safety Products, who verified the company was a supplier of Milwaukee Tool gloves and was manufacturing the majority of work gloves for Milwaukee Tool.

I checked customs records showing that gloves bearing the brand were indeed shipped to the United States. I went to a nearby Home Depot to buy the same Milwaukee Tool gloves that the prisoners said they made.

I presented the two former prisoners’ accounts to more than a dozen supply chain experts, human rights lawyers, union leaders and people with insight into the brand in Wisconsin and beyond. All said Milwaukee Tool could be violating U.S. law by selling gloves made with forced prison labor.

My reporting showed that such questionable behavior is rarely uncovered by the self-regulating system currently in place — or by reporters like me. I also learned that supply chains at companies like Milwaukee Tool, with thousands of contractors and subcontractors and sub-subcontractors — many of them overseas — are very difficult for reporters and auditors to investigate. Being able to speak Chinese gave me a window into this world, but it is just a peek.

And as of today, Milwaukee Tool still has no specific response to our investigation into allegations that some of their work gloves are produced by the sweat of prisoners forced to toil 12 to 13 hours a day for pennies per day. 

Zhen Wang is currently serving a fellowship with Wisconsin Watch through the Fund for Investigative Journalism.

Why I investigated Milwaukee Tool work gloves — and what we learned  is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit and nonpartisan newsroom. Subscribe to our newsletter to get our investigative stories and Friday news roundup.

Editor’s Note: In Chinese culture, people typically list their family name first, followed by their given name. On second-references to Chinese people quoted in this story, Wisconsin Watch is using their family name. 

Day after day over nearly five years in Chishan Prison, Lee Ming-che walked the 5 minutes from his cell to one of several manufacturing spaces on prison grounds. 

The prison in China’s central Hunan Province houses political prisoners like Lee, a renowned human rights activist who met with then-House Speaker Nancy Pelosi during her consequential 2022 visit to Taiwan. Lee, a Taiwanese college administrator, was convicted in China of “subverting state power” in 2017 and released last year. 

In an interview in Mandarin with Wisconsin Watch from his home in Taiwan, Lee said officials forced him and hundreds of other Chishan prisoners to work roughly 13 hours a day, seven days a week with just a few days off around the Chinese New Year. His pay? The equivalent of about 48 cents a day.

“I was like a robot, doing work in the daytime and then returning to the cell (at night),” Lee recalled.

His tasks included cutting polyester fabric and sewing it together to make work gloves, producing at least 200 pairs a day. 

He said he knew the gloves were destined for the United States. 

He later learned about the company whose brand was on the gloves, stamped with a thunderbolt and the word “Milwaukee.” Shown photos of Milwaukee Tool gloves for sale at two Madison, Wis. Home Depot stores, Lee verified four types of gloves he was forced to make — Free-Flex, Demolition, Performance and Winter Performance.

“I can recognize the models and the logo of work gloves,” Lee told Wisconsin Watch. “As long as I’ve made them before, I can recognize them.”

A Wisconsin Watch investigation found additional evidence that Chishan prisoners were paid pennies to make work gloves bearing the iconic brand of Milwaukee Tool, a company with a nearly 100-year history in Wisconsin. 

A supplier for Milwaukee Tool subcontracted work to the prison, two former prisoners said in separate interviews. A self-identified salesperson of the supplier, Shanghai Select Safety Products, said it manufactured the majority of Milwaukee Tool’s work gloves. And regulatory filings show Shanghai Select was contracted to manufacture “Performance Gloves” for a subsidiary of Milwaukee Tool’s parent company.   

Milwaukee Tool: ‘no evidence to support’ forced labor accusation 

Wisconsin Watch began its investigation after Chinese exile Shi Minglei, who now lives in Minnesota’s Twin Cities, launched a change.org petition in November to pressure Milwaukee Tool to stop sourcing gloves made at the prison. She alleges her husband, imprisoned human rights activist Cheng Yuan, also has been forced to use a sewing machine to produce goods at the prison. Shi cannot verify he is making Milwaukee Tool products, but she heard from two former prisoners of Milwaukee Tool’s production at the prison.  

A Milwaukee Tool spokesperson said the Brookfield-based company has “found no evidence to support the claims being made” about its link to forced labor.

“Milwaukee Tool regularly conducts a complete and thorough review of our global operations and supply chain,” Kharli Tyler, vice president of brand marketing, said in an email that did not answer specific questions from Wisconsin Watch. 

Thirteen shipments of work gloves from Shanghai arrived at United States ports since the summer of 2019 when Lee said he noticed Chishan prisoners making Milwaukee Tool-branded gloves, according to an analysis of customs shipping data provided to Wisconsin Watch by S&P Global Market Intelligence. 

Listed as a consignee for the gloves: Milwaukee Electric Tool Co. 

Those records end in 2020, but whether the shipments ended is unclear. Companies can ask federal Customs and Border Protection to shield their names and addresses from published shipping data, said S&P Global spokesperson Katherine Smith.

“If Milwaukee Tool was sourcing from a foreign prison, they’re in violation of Section 307,” said Charity Ryerson, a human rights lawyer and executive director of Chicago-based Corporate Accountability Lab, referring to the federal law banning imports of goods made with forced labor.

Milwaukee Tool’s parent company, Hong Kong-based Techtronic Industries Company Limited, has a policy prohibiting the use of “modern slavery and human trafficking.” The Milwaukee Tool Legal Council in December told the Business and Human Rights Centre that “a thorough investigation of these claims was conducted, and we have found no evidence to support the claims being made.” The company  “does not tolerate the use of forced labor.”

In February, in a response shared with Wisconsin Watch, DLA Piper, a law firm with offices around the world that represents Milwaukee Tool and Techtronic Industries, said forced labor allegations were “investigated, and denied.” 

Prisoners discuss forced labor

Shi, who is pushing the change.org petition, has had little contact with Cheng since his imprisonment in 2019. She said her husband wrote three letters to his family in 2022 in which he opaquely referenced forced labor.

In a letter to his sister last May, Cheng implicitly described excessive hours of forced labor by citing two lines from a poem by Tao Yuanming, one of China’s great poets. Translations go like this: “I rise early to clear away the weeds, Till, hoe on shoulder, I plod home with the moon.” 

Shi said she aims to ease the slavery-like conditions endured by Cheng, who was arrested while running a Chinese organization that advocated for victims of discrimination.

Wisconsin Watch interviewed an additional former prisoner who claims Milwaukee Tool is profiting from forced labor at Chishan Prison. 

He asked to use the pseudonym Xu Lun to protect his safety.

While incarcerated at Chishan Prison, Xu remembers making all types of work gloves Lee identified and another Milwaukee Tool-branded model: Winter Demolition. 

“Everyone knows these things will be exported to America,” Xu said. “We stitched labels onto every single pair (of gloves). Labels do show the address.”

The label attached to one pair purchased by Wisconsin Watch reads: “ENGINEERED BY MILWAUKEE TOOL. PROFESSIONALLY MADE IN CHINA,” and it includes the company’s website URL and Brookfield address. 

Xu said many prisoners developed eczema in hot and humid conditions at the prison workplace. Lee said he now has allergies which his doctor blames on the clouds of fabric dust he inhaled while working in prison.

Contracting down the supply chain

Lee and Xu independently identified the name of the supplier that outsourced work to Chishan Prison as Shanghai Select Safety Products, which advertises its own line of gloves. 

Lee said he heard the name from the prison police and also saw it on purchase orders. Xu recalled hearing the supplier’s name from a prisoner who worked in a warehouse stocking  gloves.

In August 2015, Shanghai Select Safety Products signed a $1 million contract with Techtronic Trading Limited, a subsidiary of Techtronic Industries, according to a 2018 initial public offering filed with the Chinese National Equities Exchange and Quotations. The contract was later renewed, and the Chinese manufacturer was contracted to make “Performance Gloves” for Techtronic Trading in 2017, the IPO shows.  

Also in June 2015, Milwaukee Tool introduced a new product, Demolition work gloves. The next year, the company launched three more models: Free-Flex, Performance and a fingerless version of Performance made of the same polyester fabric. 

“For the next two, three, and four years, you’ll continue to see me up here talking about the new latest greatest gloves from Milwaukee,” a Milwaukee Tool product manager announced at a 2016 event.

Milwaukee Tool has continued to expand its product line to add gloves with dipped coating and goatskin leather work gloves.

Salesperson: ‘We’re making the majority of Milwaukee-branded work gloves’

In February, this reporter sought to purchase Milwaukee Tool-branded gloves on Taobao, China’s version of Amazon.com. Two third-party vendors told the reporter they sell work gloves that suppliers rejected as defective. Shanghai Select Safety Products was one of such suppliers.  

Posing as a middleman for an American buyer, this reporter separately contacted a self-identified Shanghai Select Safety Products salesperson. “We’re making the majority of Milwaukee-branded work gloves,” the salesperson said in a text message. 

The salesperson shared a catalog that identified Shanghai Select as a gloves supplier for Milwaukee Tool.

Shi believes Shanghai Select Safety Products outsources to cut labor costs and subcontracts portions of work gloves orders to the Chishan Prison corporation.  

China’s government prison enterprise system requires provincial governments to pay for prison operations. The government-run prison enterprise contracts with private businesses for prisoners to produce goods, generating revenue to run the prison. 

Chishan Prison contains around 2,900 prisoners. The same prison corporation runs 11 manufacturing spaces within the compound. 

Examining satellite imagery, Lee and Xu each pointed out the buildings on prison grounds where they made gloves.

These long, rectangular workshops cover more than 80,000 square meters.  Their metal roofs are brightly colored, often blue, but sometimes red or black, according to the satellite image.

Forced labor a growing concern

Concerns over the use of forced labor in China are rising in the United States. A 2021  law prohibits importation of all goods from China’s far-western Xinjiang region due to the rampant use of forced labor. Chishan Prison sits outside of that region. 

Since the 1990s, CBP has issued 60 active enforcement actions related to goods made by prisoner laborers, with two-thirds against Chinese goods. China in recent years has faced  scrutiny related to the use of forced labor of Uyghurs, a largely Muslim ethnic minority group whom Chinese officials have forced into “re-education” camps — a move the United Nations has said could be considered a crime against humanity.

Ryerson of the Corporate Accountability Lab said the new regulations and scrutiny should prompt American companies to reassess and better monitor their supply chains.

“If you are so far removed from the supply chain that you are unknowingly sourcing from a Chinese prison, you are actually not keeping up with the rest of the industry,” she said.

Peter Rickman, president of the Milwaukee Area Service and Hospitality Workers Organization, said such exploitative conditions stem from corporate executives who chase profits at the cost of the working class. Milwaukee Tool reported $8.1 billion in sales in 2022, mostly in North America.

“Maybe (Milwaukee Tool is) ignorant of it. Maybe they are surprised themselves,” Rickman said. “But that doesn’t lessen their responsibility for ensuring wherever their production facilities are that workers are treated with dignity, respect, and humanity and are paid living wages.”

Forced laborers at Chishan Prison get reimbursed monthly depending on the complexity of the task, ranging from 20 to 300 yuan, or $3 to $43, according to Lee and Xu. 

In Wisconsin, some prisoners work in state-owned correctional industries and facilities. They get paid 97 cents per hour on average, according to an ACLU analysis. That equates to a monthly wage of $155 under 40-hour work weeks. 

Over the past decade, American customers have found notes in the products hidden by inmates who make Christmas cards, paper bags, ornaments or garments in Chinese prison labor facilities. Released prisoners claimed they were forced to produce goods for renowned brands.

Dragged into glove production 

In the summer of 2019, Lee said he noticed many inmates pivoting away from other work to sew work gloves for Milwaukee Tool. He said the following year, he became part of the production line of hundreds of prisoners. 

Lee said the 90-plus hour weeks they produced Milwaukee Tool gloves violate China’s laws and regulations, including Chinese Ministry of Justice guidance to limit prison labor to 40 hours per week. The guidance also states prison labor products should be sold only within China. 

But Chinese law prohibits work refusal by incarcerated people who have the ability to work. Prisoners can be sent to solitary confinement for refusing work, not working hard enough or “intentionally destroying tools of production.”

“Everything we know about the prison system in China indicates that prisoners do not have any meaningful choice in terms of engaging in labor,” said Nicholas Bequelin, former Asian-Pacific Regional Director at Amnesty International and a visiting fellow at Yale Law School.

“There just is no evidence that prisoners can refuse to work. And so, to that extent, that would be considered slavery.”

Mixed results of self-regulatory tools

Techtronic Industries Company Limited, Milwaukee Tool’s parent, says it uses compliance tools and third-party auditors to ensure its 2,825 direct suppliers, including 1,165 in Asia, comply with its policy against modern slavery and forced labor.  

“The supplier relationship will be terminated if major compliance issues are not corrected to meet set standards,” the company said in a 2022 Environmental, Social, and Governance report.

But self-regulatory tools used by many multinational companies are flawed and often unable to detect forced labor, research shows.  

For a 2021 book, Professor Sarosh Kuruvilla, a labor policies expert at Cornell University,  examined more than 40,000 factory audits from  2011 to 2017 spanning 14 industries and 12 countries, including China. He found  45% were based on unreliable or falsified information. Audits in China were unreliable more than half the time.

Li Qiang, the founder of the New York-based nongovernmental organization China Labor Watch, said suppliers falsify information in multiple ways, such as faking data related to workers, products and salaries. 

A 2018 study co-published by the University of Sheffield found audit systems tend to focus on the workforce of first-tier suppliers and neglect subcontracted portions, where the risks of forced labor are “highest.” 

The study argued big brands squeeze suppliers by imposing short-term contracts, penalties and fees for late or low-quality orders while demanding razor-thin margins from the bottom of the supply chain. 

Pressure to balance their own books and fear of jeopardizing contracts pushes suppliers to deceive auditors.

Li said subcontracting is common in China — especially for suppliers who cheaply fulfill orders from American buyers. Under these circumstances, the suppliers outsource part of the order without necessarily recording it, he said.

“When a supplier is placed to produce 10,000 pairs of gloves but subcontracts half, it is too hidden for auditors to find it out during the on-site audits,” Li added. 

Suffering ‘survivor guilt’ 

Back in Taiwan, Lee continues to speak out about his years in Chishan Prison. He calls forced labor a menace to human rights and global free trade. 

“I certainly feel that I have the obligation to prove the thing happened there,” Lee said.

Shi said she suffers from “survivor guilt” as she lives relatively comfortably in the United States while pushing to improve conditions for her husband in China. 

After Chinese officials arrested Cheng in July 2019 on subversion charges, Shi and her 3-year-old daughter were placed under house arrest for 180 days on suspicion of financing his activities. Shi said five Chinese security police officers interrogated her after she posted the family’s struggles on Twitter — threatening to take her daughter away if she continued posting. 

That prompted Shi to flee to the Twin Cities, where she plans to keep pressing Milwaukee Tool to stop benefitting from forced labor. In fact, Shi and her attorneys are gearing up for a lawsuit against the company for the use of forced labor. 

“We hope Milwaukee Tool will acknowledge it, apologize for it, and stop it,” Shi said. “We won’t surrender.” 

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

Chinese prisoners: We were forced to make Milwaukee Tool gloves for cents each day is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit and nonpartisan newsroom. Subscribe to our newsletter to get our investigative stories and Friday news roundup.

Thousands of Wisconsinites have been “adjudicated incompetent” to vote under state laws designed to protect mentally incapacitated people from having someone else fill out their ballot.

Under laws in Wisconsin and many states, a court may determine someone is incompetent to vote. Ten states — including neighboring Illinois and Michigan — place no disability-related restrictions on voting rights, according to a 2018 Bazelon Center for Mental Health Law report.  

But Wisconsin lacks a statutorily defined system for tracking people ruled mentally incompetent to vote, Wisconsin Watch reporting has revealed. That has led to instances of people casting ballots in recent elections despite being on the statewide ineligible voter list. They include two voters who told Wisconsin Watch they didn’t know they were ineligible.

Disability rights advocates and legal experts disagree over whether — and to what extent  — certain people with mental disabilities should lose their voting rights.

“Historically, people with disabilities have experienced a lot of discrimination with certainly their rights, and that includes the right to vote,” said Barbara Beckert, external advocacy director of Disability Rights Wisconsin. “There is a lot of inconsistency from state to state and how this is currently in place.”

Why does Wisconsin disenfranchise certain people with mental disabilities, and how can some restore their right to vote?

Here’s what you need to know. 

Who in Wisconsin could lose their voting rights for mental disability reasons? 

A subset of people under legal guardianship — someone who has a court-appointed guardian to make health and financial decisions — may lose their right to vote. 

People with degenerative brain disorder, including dementia, and developmental disabilities — such as cerebral palsy, epilepsy and autism — may be ruled “incompetent” or “incapacitated” and lose their voting rights.

Courts rely on opinions of medical professionals and a court-appointed guardian ad litem to assess a person’s capacity to make important decisions, such as those related to their health care or finances. During a hearing, a court will determine whether a guardian is necessary and will outline the scope of the guardian’s decision- making power.  

Not everyone under guardianship loses the right to vote. 

While people under the guardianship might struggle to make choices about health care and finances, many can still decide who they want to vote for, said Tami Jackson, a public policy analyst for the Wisconsin Board for People with Developmental Disabilities.

Under Wisconsin law, people disallowed from voting in Wisconsin include: “Any person who is incapable of understanding the objective of the elective process or who is under guardianship, unless the court has determined that the person is competent to exercise the right to vote.”

Under that broad definition, those who understand their reasons for voting, want to vote for a candidate and want that candidate to win should retain their voting rights, said Ellen Henningsen, who directs the Voting and Guardianship Project for Disability Rights Wisconsin.

“It’s a very simple standard. It’s a very low standard, frankly, because we don’t impose any capacity tests on average voters,” Henningsen said.  

Who decides whether someone is competent to vote?

Only a judge can determine a person’s legal competence to vote in Wisconsin. No one else has that power — not a family member, caregiver, election official, doctor or designated power of attorney. 

How many people in Wisconsin have lost their voting rights under this process? 

A Wisconsin Elections Commission list contains more than 22,000 people who have been “adjudicated incompetent” to vote in Wisconsin. But that list is imperfect. Some, but not all, counties notify state elections officials when a person is found incompetent to vote, Joel DeSpain, a Wisconsin Elections Commission spokesman, previously told Wisconsin Watch. Additionally, the statewide list includes people who have since died. 

Why disenfranchise people with certain mental disabilities?

The laws are designed to bolster election integrity and to protect mentally incapacitated people from having someone else fill out their ballot or manipulate them into voting a certain way.

“Individuals who do not understand the nature of voting creates a pool of potential votes that might be cast by anyone with the ability to gain access to those individuals’ ballots — a species of vote fraud,” Pamela Karlan, the co-director of the Supreme Court Litigation Clinic at the Stanford University Law School, wrote in the McGeorge Law Review. 

For instance, an assisted living facility staff member could influence the votes of people with severe cognitive disabilities in their care, she told the nonprofit news outlet Stateline in 2018.

A partisan review of Wisconsin’s 2020 election raised those same concerns when it found a couple of examples of nursing home residents who had voted despite being on the state’s “adjudicated incompetent” list. But no cases of nursing home voter fraud have come to light. 

Critics of disenfranchisement laws and practice point out such scenarios involve law-breaking by people other than the person with a disability, and they question the idea of protecting the rights of a cognitively disabled voter by stripping them away.

Can people restore their voting rights after losing them? 

Yes. That involves petitioning the county probate court. Filing a petition carries no cost and should be done 180 days after a guardianship hearing. 

Petitioners can get help from someone who supports the restoration of their voting rights, whether a guardian, family member, service provider or teacher. 

There, petitioners can show they understand the election process, said Henningsen, who advocates for people to restore their voting rights. There are good reasons to do so, she said.  Judges may have been mistaken in the first place. Or petitioners may now understand the election process, whether because they’ve matured or received education — or their health conditions have improved.

But once people lose the right to vote, they face a higher burden of proof in having it restored, Jackson said. 

Petitioners should be prepared for the court to ask questions, says Disabilities Wisconsin Rights, which publishes a guide for voting rights restoration. 

If a court restores a petitioner’s right, the person must register to vote before casting a ballot. 

How have these issues been politicized in Wisconsin?  

The issue first gained attention a year ago as part of former Supreme Court Justice Michael Gableman’s partisan investigation into the 2020 election. Gableman identified a couple of cases of people in nursing homes who had voted despite a court removing their voting rights.

That unfolded as Republican backers of former President Donald Trump sought to sow doubts about the results of his 2020 election loss to Joe Biden — and to purge thousands of names from Wisconsin voter rolls.

“It’s unfortunate that people with disabilities are being looked at as somehow violators of election law when so many of them who have their right to vote experience incredible barriers to access voting,”  said Jackson of the Wisconsin Board for People with Developmental Disabilities. “I just see that this is a solution that is looking for a problem.”

Although conservative activists pushed misinformation in that process, including conflating ineligible and eligible voters, they did help identify some holes in Wisconsin’s statewide voter database. 

As Wisconsin Watch reported in March, Dane County Clerk Scott McDonell conducted a review of about 1,000 names from the state’s list of people a court deemed incompetent to vote and found 95 examples of people who voted after being added to the list.

While more examples than previously known, the number is small compared with the millions of votes cast in statewide elections — and not enough to alter past results as Trump and others have claimed. In reviewing some of the cases, Wisconsin Watch found examples of human error, rather than coordinated or intentional illegal voting.

“We all want our elections to have integrity, but we also want to make sure that doesn’t come at the expense of the rights of people with disabilities,” Beckert said. 

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

Why some Wisconsin residents with mental disabilities lose voting rights — and how they can restore them is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Two recently unemployed Chinese nationals weigh their options in a cramped Park Falls, Wisconsin, motel room, not far from where they worked in a former paper mill now being used to mine cryptocurrency.

One of them continues to nurse a stitched-up laceration across his left wrist from an on-the-job injury after he tripped while carrying a computer in August, a few months before he was let go.

Speaking in their native Mandarin, Aaron and Justin — as they refer to themselves in English — came to the United States on visas that allowed them to visit temporarily for “business activities” but not to take jobs in America. The two said they thought they had a long-term future helping a global company, SOS Limited, establish a cryptocurrency mining operation in North America, one of just two known facilities in Wisconsin. 

What they found were what they described as unsafe working conditions and possible skirting of immigration and labor laws. Wisconsin Watch is not publishing their names because they are concerned about their legal status to work in the United States.

The two said they were abruptly fired and spent weeks holed up in the motel until they belatedly got their final month’s salary from their employer. 

Their story is among several troubling signs that the company, which has just a handful of employees based in Park Falls, may not deliver the type of economic boost Park Falls was seeking when the city loaned one of SOS Limited’s current partners $1 million to revive the paper mill, which once employed hundreds of workers. The company’s two other announced North American cryptocurrency mining sites, including one in Marinette County, are also stalled.

Since August, Bitcoin has lost almost three quarters of its cash value. And over the past two years, SOS Limited has seen 94% of its share value erased after raising more than $600 million from investors. 

The story of the two Chinese nationals is also part of a larger tale about an economically challenged Midwestern mill town and the shadowy industry that produces Bitcoin, Ethereum and other digital currencies.

Cryptocurrency mining operations were prohibited in China in 2021 due to concerns over criminal activity and economic stability. They’ve since moved to countries with laxer regulations such as the United States.

“The (Chinese) government banned crypto mining operations in the country,” Aaron said. “Then, we saw an online post about hiring workers to the U.S.”

Crypto business takes root in rural Wisconsin

A combination of local, regional and global factors brought two Chinese citizens to a town of 2,400 people in rural Price County, one of the least populated in the state.

For decades, Park Falls was a company town centered on the iconic Flambeau River paper mill built along the banks to harness hydroelectric power to run the plant.

“It meant a lot to this community,” said John Tapplin, a former mill employee who was president of the local union. “At one time it was probably dumping like a quarter million dollars every two weeks into the economy.”

But the mill’s future has been uncertain since its longtime owner sold it in 2006. It operated for little more than a decade, temporarily shutting down in 2019.

Then New Jersey-based businessman Yong Liu and several investors stepped in and restarted operations the next year, buoying hopes that the paper mill could return to being the economic heart of the community. Some employees were called back to work.

The city issued a $1 million bridge loan to keep things running, but in the end a combination of the COVID-19 pandemic and depressed commodity prices killed the business, recalled Mayor Michael Bablick.

“It was sort of a slow drip for quite a while,” he said. “Finally, it just went down and just couldn’t seem to find its way back open again.”

The mill was sold off at auction to a liquidator. A number of creditors, including the city of Park Falls, went to court for payment. The judge ordered Liu’s business interests to pay the remaining $828,108 of the loan earlier — a process that’s still underway.

Since then, the current owner has farmed out some of the space to various companies while dismantling other parts of the mill.

“They’re doing, I think, all the things you’d expect a liquidator to do,” Bablick said. “They’re removing equipment, they’re removing valuable copper, things like that.”

Bitcoin mining comes to Park Falls

Last year SOS Limited, whose shares trade on the New York Stock Exchange, began installing racks of computers inside the former paper mill to mine cryptocurrencies.

“The company’s vision is to become one of the leading block-chain technology service providers in North America,” it wrote in a filing with financial regulators, referring to one of the key components of how cryptocurrencies are created and maintained.

Cryptocurrencies, such as Bitcoin and Ethereum, have emerged over the past decade as a form of digital currency created by sophisticated computers solving complex computational problems to create unique strings of information. Mining operations compete with each other to work out these complex problems, thereby creating a digital currency that can be traded on the open market for hard currencies including U.S. dollars. 

The Chinese government has long been hostile to digital currencies, partly because it’s difficult to regulate them, but also because the computers use massive amounts of energy, which has raised environmental concerns.

In a recent 46-page report, the White House estimated the greenhouse gas footprint of electricity  powering U.S. cryptocurrency production in  2021 was equivalent to the average annual greenhouse gas emissions from 3 million gas-powered automobiles. The United States now hosts about one-third of global Bitcoin asset mining, the report said.

In Park Falls, the arrival in early 2022 of a cryptocurrency operation received a cool reception.

“The city does not believe this use is the best use of the property in terms of jobs for our area, however, that is a matter solely for the owner of the mill to decide,” City Administrator Brentt Michaelek stated on the Park Falls Facebook page.

Even so, the site’s industrial zoning meant the city couldn’t stop it.

“Our legal analysis, and I think it’s pretty common sense, (is) that you can probably run computer servers if you can run a paper mill,” Bablick said.

Officials also found cryptocurrency mining preferable to the alternative: a fallow and blighted mill in the center of the city. 

“Things can really go wrong in a huge industrial facility real quick when there’s nobody there,” he added.

SOS Limited embroiled in controversy

SOS Limited’s arrival in Wisconsin coincided with the company’s public acknowledgment that it’s under investigation by the Securities and Exchange Commission.

“The company intends to cooperate with the SEC with respect to the investigation,” SOS Limited wrote in a Feb. 25 filing with the financial regulator.

The SEC served a subpoena to the company following allegations of fraud raised by a pair of investment firms that publicize — and then profit from — publicly traded companies that mislead investors.

The investment firms’ critical reports, published in February 2021, questioned the company’s legitimacy as a cryptocurrency operation.

Hindenburg Research, which publishes information and makes stock bets on what it suspects are failing companies, seized on SOS Limited’s publicity photos of another one of its alleged equipment suppliers. Other sources suggested that the photos were actually from an entirely different — and unconnected — Chinese cryptocurrency operation.

Another research firm released information that the company purportedly supplying SOS Limited with $20 million worth of computer equipment to mine cryptocurrencies was actually a shell company created to give the illusion of progress.

“We find the company’s claims regarding its supposed cryptocurrency mining purchases and acquisitions to be extremely problematic, if not fabricated entirely,” Culper Research wrote in its Feb. 26, 2021 report. 

The allegations came from short-seller investors who place bets that a stock’s price will fall. That’s controversial, but the researchers defend their methods, saying they shine a light on corporate misdeeds.

“Our business model is to find fraud and bet against companies that we think are engaging in fraud,” Hindenburg’s Nate Anderson told Wisconsin Watch. “So our positioning is aligned with our beliefs.”

Anderson said there are questionable lines in SOS Limited’s recent regulatory filings that show $307 million of the more than $600 million raised by shareholders are “unspecified receivables,” meaning the company has not detailed what it’s doing with roughly half the money that has poured in from investors.

SOS Limited executives and attorneys did not answer questions emailed by Wisconsin Watch. But in a March 2021 web statement, the company denied what it calls “distorted, misleading, and unsubstantiated claims” and pledged to answer its critics. 

“SOS stands behind the integrity of the company and remains committed to maintaining transparency and the highest ethical principles,” it said in a lengthy web statement.

$5 million settlement reached

The company has agreed to pay $5 million to settle a class-action lawsuit by former shareholders who had sued following the allegations raised by the research firms. SOS Limited admitted no wrongdoing, but it also did not answer the core allegation contained in the complaint.

“There has been a distinct lack of communication from SOS on its business operations, and its questionable deals,” Anderson said. “And it seems clear that shareholders want the answers to those questions.”

But some investors hope the problems are more of a cultural disconnect than evidence of fraud. 

József Gazsó said he has bought about $32,000 worth of SOS stock since March 2020. He also handled investments for friends and family in his native Hungary.

“This move to the U.S. was a good business move,” Gazsó told Wisconsin Watch from Budapest, where he works in logistics. “If they prove that they can mine in a safe and economic way, with renewable (energy) they have a huge upside potential.”

He said his own firm in Hungary does business with a large Chinese company that’s often averse to the type of investor relations and normal publicity that U.S. shareholders demand. He admitted he sometimes doubts the company will continue to issue new share offerings while showing little public progress in cryptocurrency mining.

“If the company is a scam, I have been a fool,” he texted after an interview with Wisconsin Watch. 

Wisconsin expansion put on ice

The cryptocurrency operation quietly expanded in early 2022 by beginning to move its equipment outside the confines of the mill’s thick walls. 

The din of computers and cooling equipment has been a problem in other parts of the country including Niagara Falls, New York, a city that’s used to the roar of North America’s largest waterfall. 

In Park Falls, Michaelek, the city administrator, said officials noticed the expansion had begun without the owner pulling any permits.

“They were starting to put footings outside the building,” he said. “We told them you can’t do that.”

The company came back with an application, but it was voted down in August because there was no engineering survey on how much noise the outdoor operation would generate.

While that was happening, SOS investors hungry for updates looked to the Price County Review, a weekly newspaper headquartered in Phillips, the county seat, for updates on the cryptocurrency operation.

Company executives shared a write-up in the local newspaper, one of the few reports of progress on the ground after SOS had raised hundreds of millions of dollars from investors.

The company last June released a short video, a rare public statement about its cryptocurrency operation in Wisconsin. It showed the interior of the Park Falls operation. The video was evidence of cryptocurrency mining at the first of three U.S. sites it had announced in April 2021. 

That announcement described a partnership with U.S.-based holding companies with power agreements in Park Falls; Stacyville, Maine; and Niagara, Wisconsin.

“If and when the site operations get underway, the company anticipates it will create significant jobs (sic) opportunities in the U.S.,” the company wrote in an April 2021 press release.

Crypto future unclear

But experts in Wisconsin are skeptical that cryptocurrency mining operations will ever offer meaningful employment after they are up and running.

“It’s analogous to some other things like data centers,” said Tom Still of the Wisconsin Technology Council, a Madison-based nonpartisan advocate for the state’s tech industry. “You know, a lot goes into them in terms of construction but not necessarily a lot of employment afterwards.”

Cryptocurrency production is largely unregulated in the United States, and it’s unknown how many are in operation in Wisconsin. Still said he’s aware of only one other cryptocurrency mine in the state: Digital Power Optimization’s facility in the town of Hatfield, about 50 miles southeast of Eau Claire. The operation runs on renewable energy.

Alex Stoewer, chief operating officer of New York-based Digital Power Optimization, said his firm’s model of partnering with renewable energy producers is keeping it in the black.

“Despite the difficulties in the broader crypto market, this operation continues to generate positive cash flow, much of which is being reinvested in a maintenance plan for the hydro infrastructure, canal and dam,” he said in a written statement.

SOS expansion slowed elsewhere

“The only information we ever had about it was inquiries from reporters, or from potential investors,” she told Wisconsin Watch.

Aside from Park Falls, SOS Limited’s other two projects in Maine and in Niagara, Wisconsin, have yet to materialize. Niagara city administrator Audrey Fredrick said there has been no activity on the site of a former paper mill since April 2021, when the company announced its plans in the city of 1,600 people in Marinette County along the Menominee River.

But she said there have been reports of people traveling to the city near Michigan’s Upper Peninsula to see if there was anything happening.

“People tried to sneak on the site,” Fredrick said. “Like, investors who felt they were duped, and of course the site is secure because there’s a landfill … and dangerous because there’s a dam there — but no, there’s nothing.”

SOS Limited’s U.S. partner in the three sites is Liu, who for nearly two years had owned the Park Falls mill. Reached briefly on his cellphone, he told Wisconsin Watch that so far only the Park Falls site has broken ground since there were technical hurdles in Maine and his company has yet to finalize a power buying agreement for the Niagara site in Marinette County. 

“But we built one in Texas in Fort Stockton,” he added.

To date, there’s been no mention of cryptocurrency mining in Texas in any of SOS’s regulatory filings. 

Immigration questions loom

Asked about the employment of Chinese nationals without work visas in Wisconsin, Liu said the men were contracted by clients in China that lease capacity to mine cryptocurrencies.

“That’s not our employees,” he said.

A contract signed by Aaron and reviewed by Wisconsin Watch shows he was employed by Shenzhen Beibeizhu Technology, also known as BBZ. The company is a main supplier of equipment to SOS Limited, and some shareholders have questioned in online forums the true nature of the two companies’ relationship.

Aaron also signed a contract with SOS Limited’s U.S. subsidiary.

“I have been communicating with the Shenzhen-based company for the promised work visa and job contract since my arrival,” Aaron said.

It wasn’t until after the two were dismissed that Aaron learned the SOS Limited’s U.S. contract wasn’t signed by the company. 

And despite Aaron’s arm injury, he had to continue lifting heavy equipment as part of the job.

Ming Luo, the site supervisor in Park Falls, declined to comment.

“My company said that I should not talk too much,” he said. 

He referred questions back to Liu, who did not respond to subsequent calls and messages.

Attorneys who advise undocumented immigrants said it appears both the employer and employees may have broken the law.

“In some ways, they’re both at risk because they have both potentially done things that are contrary to our immigration laws,” said Erin Barbato, director of the Immigrant Justice Clinic at the University of Wisconsin Law School. 

She said the two Chinese nationals run the risk of being arrested by federal authorities for working without the proper permits. But she said there’s evidence suggesting they were lured under false pretenses by being offered a contract with the U.S. company, which means the employers could also be held responsible. 

“It’s a very strange situation,” she added.

Keeping the lights on

Bablick, the Park Falls mayor, said the former paper mill is being underutilized as a cryptocurrency mine. And he said he’s troubled by reports of workers going unpaid.

“The (mill) owners could have done better as far as getting tenants in there, that would have been very useful for the town, and I tried to work with them,” he said. “It’s just, they made a business decision. It made sense for them. It wasn’t the best for us.”

Still, he said, Park Falls is a resilient town that’s weathered the transition remarkably well.

“But I almost feel like the way it went away the last time was probably the best possible time,” he said, “just because of the labor market constrictions and just the way the economy is.”

A worker-friendly labor market has meant that many former mill workers have found employment elsewhere. A decade ago, he said, there would have been lines of unemployed.

“Even though they’re probably not making as much money as they used to be, they at least had an opportunity to find a job,” he added.

Chinese workers seek new start 

In the weeks after being dismissed from their job and offered a flight back to China without any guarantee of payment for their last month of work, Aaron and Justin spent several weeks in their hotel room, uncertain of their next move.

“They have been asking me to go back to work, but I don’t want to,” Aaron told Wisconsin Watch on Dec. 6.

Days later, they left Park Falls for good. By the middle of the month, they received their final salaries. Justin and Aaron are staying with friends in Chicago to figure out a way to remain in the United States.

They said they didn’t encounter any prejudice against them personally during their time in Park Falls, but there was at least one unsettling sign that the foreign presence is unwelcome.

Inside the mill on a brick wall somebody scrawled in yellow paint a racist slur targeting the Chinese.

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

In rural Wisconsin, former employees lift curtain on troubled crypto mine is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit and nonpartisan newsroom. Subscribe to our newsletter to get our investigative stories and Friday news roundup.

During the chaotic withdrawal of U.S. troops last year from Afghanistan, 148 students from the Asian University for Women made a dramatic escape, narrowly missing gunfire and suicide bombs set off at the overrun Kabul Airport.

Despite the dangers, the women were determined. They knew that with the Taliban back in power, their dreams of a college education would likely soon be over. 

During the 20 years of U.S. occupation, the number of Afghan women in higher education increased from around 5,000 in 2001 under the previous Taliban rule to about 90,000 in 2018, the United Nations found.

In late summer, the fleeing students ended up at Wisconsin’s Fort McCoy, where they tutored fellow evacuees in English as they waited to find out where they would be resettled.

The women, ranging in age from 18 to 25, are now scattered across 10 universities in the United States. But for some of these students, including 10 women at the University of Wisconsin-Milwaukee, they face a new challenge: paying for college.

Due to a miscommunication, Mahrukh Delawarzad and other young women believed they had been offered free college tuition and housing at UW-Milwaukee. But the offer financed by a local church — generous as it was — covered just the cost of the university’s Intensive English Program.

Of the nearly $6.5 billion in federal funds set aside for resettlement of the 76,000 Afghan evacuees, none is available for higher education. 

Educators have urged Congress to provide additional support for displaced students. And in June, the U.S. Department of Education made some Afghan evacuees eligible for federal student aid, which may help the students pay for UW-Milwaukee’s tuition, which costs $9,610 a year. 

Delawarzad and the others say they’re not sure how they will pay for their education with no family support and temporary legal status. But they said they would consider applying for federal aid. 

She dreams of getting a degree in public health and then going to medical school. Having lived through a protracted war and dangerous journey from her native land, Delawarzad knows life is precious. 

“I want to save lives,” she said. 

Daring escape

During the pandemic, the women had been studying remotely at the Bangladesh-based Asian University for Women, which has since suspended “hybrid” instruction. Kamal Ahmad, a U.S. citizen and founder of the university, said he started receiving messages around June 2021 from the students, “worried about the political changes that are coming into this country.” 

Ahmad began orchestrating the evacuation from his office in Cambridge, Massachusetts, arranging to get the students to the U.S. military-controlled Kabul airport.

With the Aug. 31, 2021 withdrawal deadline fast approaching, the window of opportunity to flee was closing. Seven buses packed with university students passed through snarled traffic. On the evening of Aug. 23 into Aug. 24, while making their second approach to the airport — a 40-hour ordeal — the U.S. military suggested the group return home.

Delawarzad was on one of those buses. She said every young woman, despite exhaustion, dehydration and fear, reminded themselves why they were there: to get out and get an education.

The women persuaded Ahmad to give it a final try. He called a Taliban contact, persuading him to let the buses pass through the checkpoints on the way to the airport. Ahmad also tapped into political support in the United States, gaining help from the White House.

All 148 students made it, boarding an Air Force C-17 on Aug. 27, 2021. When the airplane’s door closed, Simah Sahnosh, another student, was overwhelmed, saying to herself, “I leave behind my pride, my memories, my dreams, my traditions, my happiness, my family, and my homeland.”

But the women didn’t know where they were heading next — to Bangladesh, to continue their studies — or somewhere else? 

Life as evacuees — and students 

When they landed in Spain, the women found out they were not bound for Bangladesh but for the United States. Delawarzad said she felt a sense of relief, knowing they would be treated as refugees. She called her mother in Afghanistan and told her not to worry.

Scott Stevens, president of the University and College Intensive English Programs, was following the women’s well-publicized escape. When he learned of the need for English language training to continue their studies, he spread the word to other members of the consortium, which includes his own University of Delaware.

The challenge was daunting, with the universities “not prepared to absorb the costs of special needs of displaced students.” But consortium members stepped up, offering to host 55 of the evacuees.

“At the end of the day, universities choose to do the right thing. They choose to stand up for these women,” Stevens said.

In addition to UW-Milwaukee, nine other universities agreed to offer English language training or admit the students as undergraduates, including West Virginia, North Texas, Georgia State, Delaware, Suffolk, DePaul, Arizona State, Cornell and Brown. Ahmad estimates about $32 million has been committed by the schools to educate the 148 women.

Brooke Haley, director of UW-Milwaukee’s English Language Academy, offered to help but was told the university was not in a position to pay the tuition of the evacuees. 

Between 2010 and 2020, UW-Milwaukee experienced a 21% drop in enrollment, the second worst decline of any four-year UW System campus, according to the Wisconsin Policy Forum. And the pandemic made it worse, prompting a loss by July 2021 of $91.8 million in income from tuition and room and board as enrollment dropped.

Ahmad, who was born in Bangladesh, knows a U.S. education is not cheap, especially at elite schools. He moved here in 1980, attending the Phillips Exeter Academy, Harvard and then University of Michigan. 

‘Full scholarship’ promised

While still at Fort McCoy, the women began receiving college acceptance letters. Sahnosh was accepted by Cornell, which she described as a “top” university. 

In an email shared with Wisconsin Watch, a former representative of the Asian University for Women wrote that UW–Milwaukee had “generously offered a full scholarship that includes tuition and housing. UWM has an academic program that will suit your interests and allow you to pursue your goals and dreams in the US.”

Shekiba Sultani was confused by the message. It didn’t say how long the university would cover the full cost of attending. Around the same time, some other women received full tuition scholarship offers from other universities, including Arizona State, which raised money from private donors to fund 61 of the Asian University for Women students for their four-year undergraduate degrees. 

That led the women who were placed at UW-Milwaukee to believe they would be treated the same. Back in Afghanistan, they had been admitted by AUW on full scholarship. 

But UWM was operating on a different track. English instructors sought funds to support the women in the university’s Intensive English Program. Mari Chevako, a senior lecturer, contacted Eastbrook Church in Milwaukee to explore funding. The church raised a “generous” amount of money and matched each student with a host family, said Chevako, who is a member of the church.

In January, the women finally figured out that they had enrolled only as non-degree students — and that the offer of tuition and housing would end when the intensive English program finished. 

“All the girls were saying, ‘(If) we do not have any scholarships, what will happen to us?’ ” said Tahera Sultani, another student. “It’s so stressful for me.”

Said Haley of the Intensive English Program: “I feel (and) I understand their disappointment and how they see other friends having a different, more secure financial situation. How would that feel? And especially given all the other trauma they’ve experienced, living in that kind of uncertainty is traumatic.” 

She added, “We did the best we could.”

Stevens said many universities scrambled to get the women funded for the first year and then needed to come up with the remainder semester by semester. Besides the financial constraints universities face, Stevens said school administrators must weigh access to scholarships against the needs of other students. 

Using a Biblical reference, he said, “You don’t want to be in a position of robbing Peter to pay Paul.”

Jobs, extra aid keep students afloat

This spring, Eastbrook Church vowed to continue funding the women’s education through their first year of college at UW-Milwaukee. They have launched the Afghan Student Partnership of Milwaukee to collect donations. 

To support themselves, the evacuees all secured summer jobs. Delawarzad worked two jobs, as a cashier and a summer school art teacher. Her best friend, Manizha Nazari, was a part-time day care teacher. Shekiba Sultani found a job at Dairy Queen. Tahera Sultani worked weekends at Walgreens.

Haley said she has encouraged the women to finish the Intensive English Program. But, she told them, “If you want to apply to another university that can promise you a full scholarship, you should do that.” 

Erin Barbato, director of the Immigrant Justice Clinic at the UW-Madison, said legally, the women can transfer to another university. But she said it would be “complicated” to move given their resettlement and immigration status.

“I suppose if they qualified to enroll as a regular student at a university or college, maintained lawful status, and could afford to pay or find funding, they could go to a different school,” Barbato said. 

Under the resettlement process, the women were admitted to the United States on humanitarian parole. One Congressional Research Service paper showed over 94% of more than 76,000 Afghan evacuees were granted parole, which allows them to remain in the country for two years. 

The asylum program faces severe backlogs and lengthy process times. In early August, bipartisan legislation, called the Afghan Adjustment Act, was introduced in Congress to provide a pathway to permanent legal status for Afghan nationals, including those on humanitarian parole. If passed, parolees who have not yet received permanent status would continue to be granted protection from deportation. Still, the bill faces an upward climb in the Senate. 

Delawarzad said she is inclined to stay in Milwaukee, saying it would be hard to relocate given the uncertainty around her legal status and what financial support she might receive at another university. 

Discrimination against women revived 

Still, the students count themselves as lucky. They know what women in Afghanistan are going through under Taliban rule. 

Nazari said her friends are stuck at home after the Taliban closed many universities to women. If they step out of the house, they must wear a full-length dress and be accompanied by a man. A recent Amnesty International study found widespread repression against women and girls in every aspect of their lives — including access to high school and college — since the Taliban takeover. 

For Shekiba Sultani, the issue is personal. One of her sisters was a member of the Afghan National jiu jitsu team but had to quit after six years of training. The Taliban banned women from sports shortly after the Americans left. 

“Can you help me evacuate from Afghanistan to some other places where I could do my sports?” her sister pleaded.

“I don’t know,” Sultani responded. “Maybe we’ll do something in the future. Please be patient.” 

Back in Cambridge, Massachusetts, Ahmad of AUW has high hopes for the women studying in the United States, saying they could become leaders in their home country one day “if the situation improves.” The university continues to recruit Afghan women to study for undergraduate degrees at the AUW campus this year. 

Delawarzad said she has been confused by the mixed messages she hears in America about women’s rights. She cited the recent U.S. Supreme Court ruling overturning a woman’s constitutional right to an abortion, saying, “They’re not giving a right for women to control their bodies.”

Still, here she is more free here to pursue an education.

“It’s encouraging me as a woman to go to school, get higher education and live as a human being,” she said. “A woman should be treated equally and speak up if you’re not.”

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

They escaped the Taliban. Now these women in Wisconsin face a new challenge: the high cost of college. is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit and nonpartisan newsroom. Subscribe to our newsletter to get our investigative stories and Friday news roundup.

In November 2020, Danielle Sigler tested approximately 200 residents in a Mount Horeb, Wis. nursing home during a COVID-19 outbreak. 

The residents weren’t the only ones Sigler was worried about; 25 of her staff at Ingleside Communities also got infected. 

And in the process of testing vulnerable residents, the 36-year-old nursing home administrator herself caught COVID-19. That was before the COVID-19 vaccination was available to Americans. 

Like several of her employees, Sigler experienced so-called Long COVID, months of symptoms, including migraines, brain fog, dry cough and shortness of breath while she quarantined and worked from home.

“There were a couple of days where I just didn’t feel like I could cognitively work,” she said. 

Sigler said some of her employees didn’t have paid time off or paid sick leave left, so they went to work — even when they felt bad — as a way to make ends meet. Wisconsin law does not mandate such paid benefits for employees. 

Given the long-term labor shortage in the nursing home industry, Sigler said she has worked hard to keep ailing employees on the payroll through shortened shifts or changed tasks. For example, she assigned registered nurses to other duties if they could not provide direct care for residents. And she let some of her staffers take additional paid time off to keep them on the job. 

“I think the government should help support them in some way or offer some sort of assistance,” Sigler said, especially for health care workers who contract COVID at work. “If they could give companies assistance with paid time off for employees, that would be helpful.” 

Help for workers and their employers remains elusive. The federal government has stated that Long COVID can be considered a disability under federal law — and requires employers to provide reasonable accommodations to employees limited in their ability to work by the disease. But investigation and enforcement in such cases can take years.

As part of a set of strategies announced in early August, the federal government plans to research best practices for treating Long COVID. And it has outlined several goals to ensure that at least some of the medical costs for Long COVID are covered by Medicare, Medicaid, the Affordable Care Act and the Veterans Administration — but some of those initiatives have not yet started. 

The problem is huge.

Millions of people, including more than half a million people in Wisconsin, are COVID “long haulers.” The American Academy of Physical Medicine and Rehabilitation keeps a running tally that as of Aug. 31 estimated more than 543,000 Wisconsinites had Long COVID symptoms. The U.S. Government Accountability Office estimates that 7.7 to 23 million Americans nationwide have developed Long COVID.  

“Long COVID can hinder an individual’s ability to work, attend school, participate in community life, and engage in everyday activities,” said Department of Health and Human Services Secretary Xavier Becerra, whose agency leads and coordinates 13 other federal agencies in response to Long COVID.

Long COVID refers to hundreds of possible symptoms, including chronic fatigue, muscle and joint pain, shortness of breath and cognitive impairment. New data from the U.S. Census Bureau show that more than 40% of adults in the United States report having been infected, and nearly 20% of infected adults report having Long COVID symptoms. 

The lingering effects can last for weeks, months or even years. Women, bisexual and transgender adults as well as Hispanic adults disproportionately are most at risk, although every demographic is affected. 

The workplace impact of Long COVID

Some experts estimate 2 to 4 million U.S. employees are out of the workforce because of long-term effects of COVID-19.

“To get a sense of the sheer magnitude of that number, (4 million) is about 2.4% of the U.S. employed,” Katie Bach, who studies the role of Long COVID in the labor market shortage for the Brookings Institution, said at a congressional hearing in July.

About 44% of patients with Long COVID reported not being able to work at all, compared to their pre-COVID-19 work capacity, and 51% had reduced their working hours, according to a survey by a patients-led nonprofit COVID-19 Longhauler Advocacy Project. 

Other research shows different, but still significant impacts. Preliminary evidence from KFF finds that 25% of people with Long COVID left work after infection, and 31% reduced hours, suggesting the effect on labor markets may be significant. 

While the causes of Long COVID remain unclear, the Biden administration estimates billions of dollars in lost income and other negative effects. 

“As individuals experiencing Long COVID disproportionately work in the service sector, this has led to a labor shortage in this industry, which may contribute to inflation,” according to one federal report.  

A Lancet study found that cognitive dysfunction is one of the top three most debilitating symptoms that long haulers experience after six months, alongside fatigue and post-exertional malaise, the worsening of symptoms after engaging in a little bit of physical or mental activity.

Speaking at a congressional hearing in July, Hannah Davis, a coauthor of the Lancet paper and a COVID long hauler, said without further action from the lawmakers, “Long COVID will destroy our economy and disable a huge percentage of our society.”

Wisconsin workers sidelined 

Among those sidelined is Georgia Linders of Onalaska, Wisconsin. After struggling for months in 2021 with debilitating symptoms typical of Long COVID, Linders was fired.

Linders began working remotely even before the pandemic for Logistics Health Inc. (LHI), a La Crosse-based military health service contractor where she had worked for almost 10 years. The former administrative assistant managed clinic contracts, making multiple phone calls daily. 

Linders started experiencing low fever, sore throat, migraine and fatigue in March 2020, at the start of the pandemic when few but the most seriously ill could even be tested for COVID-19. 

“I don’t have to get up, shower and drive to work,” she said. “But then if I’m still struggling to do (work) from home, then something was really, really wrong.”

Linders said her brain was slow, and answering phone calls drained her energy. She regularly updated her supervisor on her health conditions; she was told to do her best. 

Linders said she was allowed to use accrued paid-time-off leave that she had earned during her career at LHI.

The accommodation didn’t last long, she said. The management team changed, and a new supervisor disciplined her.

“Georgia (Linders) is not meeting performance expectations. Specifically, she is failing to complete her work as assigned,” the new supervisor said in a document shared with Wisconsin Watch. “She is not adhering to direction provided by her leadership.” 

The medical notes showed Linders felt better over the summer of 2020, but fatigue, joint stiffness and brain fog recurred in the fall. Her supervisor told her she was doing less than 30% of others’ workloads, which she said added to the stress. 

She told her supervisor that her health conditions affected her work performance but was warned to expect another written warning. Around the same time, Linders was diagnosed with chronic fatigue syndrome and suspected “COVID long-haul syndrome.” She took a medical leave in November 2020 and then was on short-term disability. 

In a letter shared with Wisconsin Watch, the lawyer representing LHI said the administrative termination being issued in May 2021 was made because Linders had been on leave for over six months with “no foreseeable return-to-work date.”

Long COVID as a disability

Linders filed a complaint to the Wisconsin Department of Workforce Development (DWD), claiming discrimination based on Long COVID as a disability, in August 2021. The charge is also automatically filed with the Equal Employment Opportunity Commission (EEOC), the federal fair employment enforcement agency. 

Although the Biden administration has said Long COVID may be considered a disability,  Linders questioned what impact that will have “unless someone is holding employers accountable when they discriminate against employees.” 

Monica Murphy, managing attorney with Disability Rights Wisconsin, welcomed the federal government’s recognition of Long COVID’s long-lasting impacts on people.

“It makes clear that (Long COVID) may well fit within the disability protection,” Murphy said. According to federal guidance, Long COVID may be considered a disability “if the individual’s condition or any of its symptoms is a physical or mental impairment that substantially limits one or more major life activities.”

If Long COVID becomes disabling, employers are obligated to work with employees to come up with reasonable accommodations, such as modified work schedules, telework or reassignment to another position, according to the federal guidance. Murphy said such accommodations are often free or cost less than $500.

“Most of the many accommodations don’t have any costs to (employers),” Murphy said. “It’s just changing the way you do it or the timing of when you do something or … buying some pieces of equipment or modifying something.” 

Disability Rights Wisconsin is one of the federally designated agencies across the country to provide legal assistance for long haulers. Murphy said she has given people legal advice on how to seek accommodations from employers such as telework. 

Barriers to pursuing rights under the ADA

But some legal scholars argue the ADA is ineffective in protecting people with Long COVID from discrimination. The anti-discrimination law uses subjective terms of  “reasonable accommodation” and “undue hardship” that can become “loopholes,” noted Angelica Guevara, an assistant professor at Indiana University-Bloomington who studies disability rights law.

Because of those provisions, if Long COVID “is starting to affect your essential functions of the job,” Guevara said, “the employer doesn’t have to keep you. He or (she) can legally let you go.” 

Guevara also found the law provides limited protection for people with Lyme disease and Chronic Fatigue Syndrome, which, like Long COVID, have fatigue as a primary symptom. She added that people with these types of invisible disabilities sometimes are not believed. 

And ADA cases are hard to win. Data from the federal EEOC showed that between 2011 and 2021, 64% of charges were dismissed; 21% were resolved in favor of claimants by settlement or other arrangement and just under 3% resulted in a finding of discrimination. 

In Linder’s case, after months of investigation, EEOC dismissed her complaint, making no determination on discrimination and advising that she may bring a court action. She decided to drop the matter, citing expense and unlikelihood of proving she’d been discriminated against. 

In a letter shared with Wisconsin Watch, the lawyer representing LHI said Linders cannot claim Long COVID as a disability since she had never been diagnosed with the infection. 

Linders took her first COVID-19 test one month after her initial symptoms and then tested another time. Both results showed negative. Some long haulers report testing negative but still experiencing Long COVID symptoms.

The U.S. Department of Labor has urged employers to provide accommodations even for employees who don’t get an official Long COVID diagnosis. 

“Your focus should be on the employee’s limitations and whether there are effective accommodations that would enable the employee to perform essential job functions,” the labor agency said in its guide for employers on how to support workers with Long COVID.

Some Wisconsin employers accommodate

Like Sigler, Bach told Wisconsin Watch that many employers may be motivated to provide accommodations to help people remain productive because hiring and training new employees in a tight labor market can be difficult and expensive.

Wisconsin’s nursing home industry in particular is facing a labor shortage crisis. Despite offering competitive packages, including tuition reimbursement, Sigler said she has advertised jobs that get just one applicant. 

And even though many employers have shifted to remote or hybrid work models, some cannot provide flexible options. Sigler said her business requires most staff to physically be at work. 

But from personal experience, she knows how debilitating Long COVID can be.

Sigler returned to work on day 11 after being infected when some other staffers were quarantined at home for two to three weeks. Sigler worked 12-hour night shifts while struggling with a 103-degree fever, insomnia, sweats, and disorientation. 

“It was a really weird euphoric feeling at the end of the day,” she said.

She said her intensive workloads slowed her recovery, and her body was “destroyed.”

Alexia Kulwiec, an associate professor at the University of Wisconsin-Madison’s School for Workers, said she would like to see the federal government return to providing tax incentives for employers who provide paid sick leave for people with Long COVID. 

Under the Families First Coronavirus Response Act, employers providing paid leave for up to two weeks to employees for COVID-19 could receive reimbursements in the form of tax credits, but the program ended in March 2021. 

“It’s very disheartening to see that the policies that came out during COVID have essentially been reversed and undone, so they’re not there to protect employees today,” Kulwiec said.

A ‘mass disabling event;’ stalled federal supports 

The federal government plans to establish a Long COVID office within the Department of Health and Human Services overseeing research and coordinating activities between federal agencies, patients, researchers and physicians. But how and when it will be funded and staffed remains unclear. 

“Nothing can be done until they get funded. You would think the number of workers affected by this illness would encourage them to get funding,” Linders said, noting that Long COVID has been dubbed a “mass disabling event.”

Linders is now receiving Social Security Disability benefits — the last resort for many COVID long haulers.  

“It is a difficult and a lengthy process,” said Eva Shiffrin, a managing Attorney at Disability Rights Wisconsin. “Anything that can be done in general to shorten the lengthy process, including eliminating the five-month wait period, would help all Social Security Disability seekers including those with Long COVID.”

Back in Dane County, Sigler is still experiencing fatigue, migraines and gastrointestinal issues, and some of her staffers also still struggle with Long COVID.

“If anything, we’ve learned and worked with the pandemic,” she said. “We’ve learned to be creative. We’ve learned to work with what we have, and people have skills we can still utilize. So how best to utilize them and still maintain their health?”

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

Workers, employers struggle as Long COVID sidelines thousands of Wisconsinites is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

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Crystal Pauley, a former physician assistant, didn’t believe in so-called chronic Lyme disease — until she became sick.

Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just six out of 285 primary care doctors surveyed in Connecticut — an epicenter for the tick-borne infection — believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.

When Pauley worked for the La Crosse, Wisconsin-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. “I’m working in the medical field,” she said. “We’ve never learned about that.” 

Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become “pseudo-Lyme literate” because of her own personal journey.

Pauley belongs to a cohort of patients with Lyme-like symptoms but negative test results or patients with positive test results who suffer from lingering symptoms long after treatment. They call it chronic Lyme disease, while the Centers for Disease Control and Prevention labels it as Post-Treatment Lyme Disease Syndrome (PTLDS). The CDC says there is no known treatment for the condition. 

“Their symptoms are always real. They’re experiencing them,” said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms. 

“If someone is having physical symptoms and isn’t feeling listened to, then they’ll have mental health repercussions and then that will impact their physical well-being,” she said. “And then it’s a spiral that if you don’t address both components of health, you’re not going to make much progress on either side. And they will continue to feel sick.” 

Wisconsin Watch talked with five Wisconsin patients, all women, who have been searching for validation and experimenting with personalized treatments as part of a long and sometimes grueling battle with the illness. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.

One of the five tested positive for Lyme using a two-step testing recommended by the U.S. Centers for Disease Control and Prevention. Three others tested positive using a test not recommended by the CDC. The fifth woman was diagnosed as possibly suffering from the disease by a “Lyme-literate” practitioner.

Wide-ranging symptoms

All of the five patients share commonalities. They’ve never noticed the signature “bull’s eye” rash around the tick bite, the hallmark of Lyme disease, which is seen in 70% to 80% of patients. But relentless waves of rheumatologic, cardiac and neurological symptoms have flattened their lives. Some of them were previously fit and healthy. 

Pauley, 37, who as a student cranked through medical textbooks, began having trouble remembering a simple medication direction. She put up sticky notes around her office to jar her memory.

Alicia Cashman, 57, runs the Madison Area Lyme Support Group. She recalled unbearable pelvic pain beginning in 2010. “This causes pain of a magnitude that makes you want to die,” she said.

The pain metastasized quickly. She felt joint pain, headaches, insomnia and extreme fatigue. “It was so bad that I just wanted to be in a dark room with no smell, no sound, no light. Your body has succumbed to this,” she said.

Shelbie Bertolasi, 47, is a stay-at-home mother in Waukesha with four children ages 5 to 24. Until about seven years ago, she was healthy and stuck to a workout routine. 

Bertolasi’s health steadily deteriorated starting in early 2015 when she miscarried twins. Then, she developed a high fever, with stomach and intestinal pain. She lost 30 pounds in a month due to constant diarrhea. Doctors flagged and treated excessive bacteria in her small intestine. She felt better but gradually was beset by continual pain in her joints, back, knees and hip. 

Sometimes, she loses feeling in her feet. “It’s a nuisance when you’re in the middle of (driving), and you can’t feel the pedals that well,” she said.

Judy Stevens, 52, a former school counselor and psychotherapist from Wauwatosa, says shortly after the loss of her father, she was hit by joint pain, brain fog, insomnia, hair loss and night sweats. She was an athletic person, a cross-country coach at school and a triathlete. 

None of these women recalled seeing a tick, except Jessica Croteau, who lives in Rice Lake. The 34-year-old noticed a tick on her neck in the summer of 2019 at home and started to have flu-like symptoms, but she tested negative for Lyme. Croteau suffered bouts of low-grade fever, a stiff neck and gastrointestinal problems. She ended up visiting the emergency room when her blood pressure spiked. 

Going down ‘rabbit holes’

Often, chronic Lyme patients present multiple symptoms that make their diagnosis challenging. They bounce from one specialist to another to tackle each problem, but each diagnosis cannot explain all of the symptoms they are experiencing. 

Cashman underwent an MRI because of her severe pelvic pain, and the results found two deflating ovarian cysts which can cause severe pain in the lower abdomen. But that diagnosis did not explain the unbearable pain that gravitated to her knees and to her head. She recalled that the swollen knee “got red hot to touch,” and she developed a fever. Cashman began to look for causes. “Not everything is Lyme, but everything can be (Lyme),” she said. “It’s a weird thing, but you got to go down these rabbit holes.” 

Croteau saw specialists, including emergency physicians, a cardiologist, a kidney specialist and an immunologist. All the tests she took were negative for Lyme disease. She was told the problems may be related to psychological issues.

“So basically, it’s been a timeline of two years of not being taken seriously, just pushed away — either told I can’t do anything for you (or) there’s nothing really wrong with you,” Croteau said.

A medical provider suggested that she seek counseling and increase her dose of anti-anxiety medicine. But the pain in her joints and wrists were real, and her knuckles often got swollen. The brain fog made it hard for her to punch in a phone number correctly. 

Bertolasi saw a pain specialist, a psychiatrist, a spinal therapist and a neurologist. They diagnosed her with SI joint dysfunction. Back surgery, therapy and exercise relieved some of her pain, but her knees continue to hurt. She was told, “You’re getting older, (so) things don’t work as well as they used to.” 

Unsatisfied, in 2019, Bertolasi saw a rheumatologist who ordered several tests, including for rheumatoid arthritis and lupus, and the results were all negative. And the forgetfulness has persisted; she has left her phone in the refrigerator. 

“You’re just surrounded by this dark (mental) fog, and you just don’t know how to navigate your way through,” she said. 

After seeing around 30 specialists, Stevens had a bag of medications, including many prescribed psychotropic drugs. She went on those drugs, and her psychiatric symptoms got worse. However, she doesn’t blame doctors, who generally specialize in one area of the body or a family of diseases. 

“When you have a whole slew of symptoms, it’s hard for the physicians to dig deeper,” she said. 

Sometimes, patients with waning and waxing symptoms are labeled as malingerers who are faking symptoms to get attention. “This is very common with people with Lyme,” Stevens said.

Sanchez, the infectious disease doctor, worries that patients who do not get answers from mainstream medicine may gravitate toward unproven — and expensive — alternatives. But she sees no harm in some strategies that may offer relief, including meditation, tai chi, acupuncture or massage therapy.

No quick fix

Two of the five women interviewed by Wisconsin Watch have been diagnosed through the CDC’s two-step testing regimen: the ELISA test followed by the Western Blot, two different ways of looking for Lyme antibodies in the patient’s blood. Pauley tested positive for Lyme using the CDC’s recommended criteria, and Stevens tested positive on just one of the two tests.

Two others used a laboratory that administers the same tests but uses less-stringent criteria to determine whether a person has Lyme. Cashman and Bertolasi both tested positive through that testing. A 2014 Columbia University study found that some labs using their own criteria reported more false positive results  — 57% — among people with no history of Lyme than the 25% false-positive rate using CDC criteria. Croteau used three different laboratories but tested negative each time.

With a Lyme disease diagnosis, Pauley took the standard treatment, doxycycline, for three weeks. 

But when she completed the antibiotic therapy, she felt even worse. While her memory has improved, she has developed muscle pain, and her knees hurt even more. She felt tired, saying she could sleep 10 to 16 hours a day. But her doctor, following standard protocol, has told her she is done with treatment.

The same thing happened to Stevens. The doctor prescribed her 30 days of doxycycline and suggested that she seek a “Lyme-literate” doctor as she could not prescribe any longer course of antibiotics.

Stevens’ doctor followed CDC guidance, which recommends against prolonged antibiotic treatment, saying the harm outweighs the benefit. Sanchez echoed the argument, saying that doctors must weigh the risks and benefits of antibiotics, just like other prescribed medications.

“If we don’t see any plus side benefit to it, then we’re only exposing people to unnecessary risks,” she said. “Nothing comes with a free lunch. It’s important to be thoughtful about the right antibiotic at the right dose for the right amount of time.”

She also said some antibiotics could bring down inflammation as a side effect, making some patients feel better. This is also the point at which some patients begin experimenting with treatments that mainstream medicine does not recognize.

Sufferers try unconventional treatments

Cashman, living in Cataract, Wisconsin was also diagnosed with Bartonella, or Cat scratch disease, and went through five years of “systemic, holistic” treatments, which included a host of herbs, antibiotics, a high dose of vitamin C and supplements. She also received ozone therapy and laser therapy for pain relief. She is now nearly symptom-free, but still deals with spine stiffness. 

Stevens found two Lyme-literate doctors in Wisconsin who are versed in both Western and alternative medicine. She said she was co-infected with Relapsing Fever, Babesiosis and Bartonella. She said her treatments are highly individualized, and her doctors tweak her therapies from time to time. At one point, Stevens was on more than 40 types of herbs and supplements.

“I’m living proof that I got better as a result of all those herbal treatments,” she said. “I was not on antibiotics for four or five months.” 

Bertolasi turned to a Lyme-literate doctor who also treats one of her friends with similar symptoms. Besides Lyme, she was also diagnosed with Bartonella. She has completed a 14-month course of antibiotics. Now, besides taking herbal supplements, Bertolasi follows a strict diet excluding alcohol, dairy, gluten and sugar to reduce inflammation in her body.

She said she is at least 80% better than about a year ago. Her memory has somewhat returned. Still, brain fog waxes and wanes — as does pain in her joints and lower back.

Croteau tested negative with three Lyme disease tests, but she was diagnosed by a Lyme-literate doctor with Bartonella and “questionable” Lyme disease. The doctor prescribed her doxycycline, triggering a severe reaction that Lyme-infected patients sometimes experience during treatment. 

When Croteau found herself pregnant, the doctor suggested she take amoxicillin and clindamycin in low doses during her pregnancy. She stopped taking them after giving birth to her second child in late October 2021 and has been symptom free for the following two months. Croteau said her symptoms have returned since January, including fatigue and brain fog, neck stiffness, headache and nausea. She cares for her newborn at home and hasn’t started any treatment due to financial constraints.  

‘A rich person’s disease’

Since chronic Lyme is not a recognized disease, it’s difficult to get insurance coverage, so patients are usually stuck paying out of pocket for treatment.

Pauley, who lives in Woodstock, Illinois, is still searching for affordable treatments.

Her dementia-like symptoms made it impossible to continue working as a veterinary assistant, and she quit her veterinary clinic job in 2020. Previously, she had quit her physician assistant job in La Crosse and moved back to Illinois. 

“It was hard,” she said. “I went from the middle-upper class to the poverty line.” 

She went to see a Lyme-literate doctor in Milwaukee in August, when she was also suspected to have Bartonella. Pauley was charged $525 per hour for the initial consultation fee, not counting testing fees and supplements. She was irritated to hear the doctor refer to it as “a rich person’s disease.”

“It’s hard to understand any doctors that charge like Beverly Hills lifestyle out in the Midwest,” she said. “We’re not celebrities, and I don’t get paid 30 million per film.” 

Stevens said her average costs out of pocket range from $25,000 to $50,000 a year. “It was a huge strain on us,” she said. “This is why a lot of people can’t get better, because they can’t afford it.” 

Cashman knows the financial burdens chronic Lyme patients bear, too.

She estimates she has spent $150,000 out of pocket for treatments that she and her husband — who also is a chronic Lyme patient — have taken over the years. Cashman has found ways to reduce the costs by, for example, buying pounds of ground herbs and making her own capsules at home.

Although all five women interviewed by Wisconsin Watch have tried unconventional treatments, they say they are skeptical about anyone who claims their chronic illness can be cured quickly. 

“(If it) is just a quick fix to make money, and I’m just very leery of it,” Bertolasi said. 

And they are using their experiences to help others. Pauley has become an advocate for lower health care costs. Bertolasi is writing a Lyme-friendly cookbook to chronicle recipes that have worked for her. 

Although Stevens said being a chronic Lyme patient is “like a full-time job,” she wants people to know there is hope. 

“You can be in terrible shape, but you can get better,” Stevens said. “It’s really easy to go down the road of ‘poor me,’ but it is possible to get better. There is hope. You can reach remission.”

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

Wisconsin’s ‘chronic Lyme’ patients embrace alternative treatments, rack up big bills is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit newsroom that focuses on government integrity and quality of life issues. Sign up for our newsletter for more stories straight to your inbox.

This story was produced as part of the NEW (Northeast Wisconsin) News Lab, a consortium of six news outlets covering northeastern Wisconsin.

Ali Akbar Gholami arrived in the United States last September with little more than his work ID. He had no time to gather much else as the Taliban took over the Afghanistan capital of Kabul and escalated a humanitarian crisis, prompting the U.S. to airlift him and 76,000 Afghan nationals to safety.

But Gholami — who speaks fluent English, studied civil aviation for two years and previously worked at Kabul International Airport — brought skills and a work ethic that American employers desire amid a tight labor market. That’s particularly the case in Gholami’s new home state of Wisconsin, where the unemployment rate has dipped below 3%, pushing employers to boost salaries and benefits to attract and retain talent.

Gholami, 23, arrived in Green Bay in October 2021 after flying to Qatar for security vetting and then to Holloman Air Force Base in New Mexico, a staging area for thousands of evacuees. His top priority upon arriving in Green Bay was the same as other working-age evacuees: find a job before his initial three months of federal resettlement aid ran out. 

“We just start from zero. That’s why we need more money to pay the rent and send some money back to Afghanistan to our parents,” said Gholami.

He initially trimmed meat at a local JBS Foods plant before Catholic Charities, a nonprofit resettlement agency, connected him with BelGioioso Cheese. Now he earns $24 per hour packing mozzarella blocks into boxes from 3 p.m. through midnight or later at the company’s plant in Appleton. 

But Gholami faced a challenge: Without a car or driver’s license, how would he commute between his apartment in Green Bay and the cheese plant? It’s a roughly 19-mile route inaccessible by bus. 

He is among at least 838 Afghan evacuees — including children and elderly people — now living in Wisconsin. These newcomers can make communities more vibrant and ease the labor crunch as Wisconsin’s birth rate plunges and its population ages. The same could be said of future refugees from other countries, including Ukranians fleeing Russian President Vladimir Putin’s war.

Many employers have expressed interest in hiring Afghan evacuees, said Bojana Zorić Martinez, director of the Wisconsin Department of Children and Families’ Bureau of Refugee Programs. 

“We’re very pleased, at least from what I’m hearing, with how employment is going,” she said. “There are a lot of employment opportunities all across the state.”

But businesses won’t benefit, economic development officials say, unless Afghans can find transportation and overcome other workforce barriers that affect non-immigrant workers as well. Some evacuees need training in English, others need access to affordable child care.

Federally contracted resettlement nonprofits have helped Afghans find housing and jobs, but they aren’t equipped to address all employment barriers.

“Having a new population of Afghan immigrants is just another opportunity to help bolster our workforce,” said Missy Hughes, secretary and CEO of the Wisconsin Economic Development Corp. 

She added that employers must understand their workers’ traumatic experiences and help them succeed. 

“Businesses have to be a part of this resettlement. They can’t just be a recipient of this human being,” Hughes said.   

In Gholami’s case, his new employer loaned him money to buy a car. And volunteers are filling other gaps. Mike Ruminski, a Green Bay-area man, has helped Gholami and seven other Afghan evacuees obtain their driver’s licenses, enroll in English classes and connect with job specialists. 

Ruminski also bought two computers to allow Gholami and his three Afghan duplex mates to use the internet to set up their new lives and connect to families back home. 

“He said ‘Whatever you need to do, I can help you,’ ” Gholami said.   

Ruminski teasingly calls the four Afghans in the duplex “The Beatles” — a nod to their youthfulness and friendship forged beneath the same roof in Green Bay.  

“The one thing that keeps me here in Green Bay, Wisconsin, is the people of Green Bay, Wisconsin,” said Muddassir Saboory, Gholami’s duplex mate and former airport coworker. “Because I meet lots of nice, nice people here.”   

‘Transportation is a critical need’

On a sunny Tuesday morning last February, Gholami exited the Green Bay DMV service center with pride and excitement: He had passed his driving test.

Ruminski was waiting. He had lent Gholami his 2009 blue Toyota Prius for the test after helping him train for two weeks. 

“Excellent job,” Gholami recalled Ruminski saying. “You got the best score.”

The two met months ago at a local YMCA. Ruminski is a longtime Bay Area Workforce Development Board director and a self-employed health insurance advisor who previously trained commercial truck drivers. He offered Gholami and seven other Afghans roughly 12 to 16 hours of training each and access to his car so they could get their licenses.

Gholami practiced behind the wheel on weekends and between cheese plant shifts. Ruminski guided him on traffic laws that don’t exist in Afghanistan, such as how to navigate roundabouts. 

Transportation “is a critical need for people trying to become self-sufficient,” Ruminski said.

That’s true across Wisconsin, where many poor people and those with disabilities lack transportation. Americans typically spend 19% of their income on cars, which many communities in Wisconsin and elsewhere have long prioritized over public transportation walking and biking.  

Transportation is also one of the biggest hurdles for Afghan evacuees in Milwaukee, said Sheila Badwan, vice president of the Milwaukee chapter of the Hanan Refugee Relief Group. The Milwaukee region hosts the state’s biggest Afghan cohort, with more than 380 resettled as of April 20, according to Zorić Martinez. 

Some use the Milwaukee County Transit System, and English-speaking Afghans assist those still learning the language.

But a lack of public transit between the city of Milwaukee and surrounding communities leaves those working outside of the city struggling to find rides. 

“They don’t want to sit at home. They want to work. They’re hard workers,” Badwan said. “How do they get to their jobs?”

In Green Bay, some companies send vans, arrange carpools or find other options to transport Afghan employees between home and work, workforce officials say. Among them: JBS Foods, which has hired 26 resettled Afghans at its Green Bay beef plant  — including Saboory, 25, who works long hours as an interpreter and takes English classes twice a week in his free time. 

Still, employer-led options don’t help car-less Afghans get to the grocery store and run other essential errands, said Matt Valiquette, executive director of the Bay Area Workforce Development Board.

“Once you expand beyond Green Bay, public transportation becomes far more limited,” he said. “And in some cases, it doesn’t even exist.”

Gholami said BelGioioso helped him carpool until he could obtain a driver’s license and buy a 2006 Honda Accord. He paid $7,000 for the car using a $2,000 loan from Ruminski and another $2,000 loan from BelGioioso. 

“I didn’t expect that they would help me,” Gholami said. 

More jobs than people

Green Bay’s 126 resettled Afghans are accelerating northeast Wisconsin’s racial and ethnic diversification, which has seen the bulk of its population growth in the past decade among people of color. Ruminski has spent years volunteering with groups that have helped refugees and other immigrants settle around Green Bay. He is humbled by the Afghan evacuees’ courage and initiative.

“None of these guys have ever complained about their situation…They all got on a plane back in Afghanistan — they didn’t know where that plane was going to go,” he said. “And they didn’t know what country they were going to end up in.”

Former President Donald Trump limited immigration — including refugee resettlement — during his presidency in the name of protecting American jobs. That sentiment may linger among Trump’s fans in Wisconsin.

But Ruminski and Hughes, of the Wisconsin Economic Development Corp., counter that Wisconsin needs refugees and immigrants to help fill thousands of open positions statewide.

“We have many more job opportunities than we have people,” Hughes said.

According to a 2021 report by Forward Analytics, the research arm for the Wisconsin Counties Association, “Without natural growth, the only way to grow or even maintain the state’s population and workforce is through migration.” 

Wisconsin employers have relied on migrant and immigrant labor throughout history. But the state’s net migration rate has slowed in recent years, dropping to less than 1% during 2010-20 from 1.5% a decade earlier, Forward Analytics reported.

Refugees are typically eager to quickly secure jobs. Despite the trauma they carry, refugee employment rates closely track with those of other immigrants in the U.S., according to a 2020 Journal of Economic Perspectives study.

Local communities just need to offer “a little guidance” to make sure they thrive and stay, Ruminski said.

Hoping to stay

Whether the Afghans can live their American dreams depends upon securing permanent residency. While each has permission to live and work in the United States, their temporary status leaves them vulnerable to future deportation.

Nearly 37,000 evacuees could qualify for a Special Immigrant Visa, while some of the remaining 36,400 might qualify for asylum, according to a Department of Homeland Security report.

That requires navigating an immigration system that faced backlogs even before the Afghan evacuation. Putin’s war in Ukraine could add more pressure; thousands of fleeing Ukrainians have arrived to the U.S. border with Mexico, and Biden — who has pledged to accept up to 100,000 Ukrainian refugees — has granted them 18-month protected status. 

The Biden administration aims to expedite asylum reviews by producing decisions within 150 days of application submissions. But a shortage of immigration lawyers leaves many Afghans on their own to slog through the complicated asylum process, said Erin Barbato, director of the Immigrant Justice Clinic at the University of Wisconsin Law School.

Barbato estimated that 400 to 500 Afghans in Wisconsin are seeking asylum. Few nonprofit law firms are equipped to help, and private attorneys can be expensive, she said.

All four of the Green Bay “Beatles” are applying for asylum. That means proving the deadly risk of returning to Afghanistan and filing an application within one year of arrival here.

Saboory said the Taliban viewed his work as an airport safety officer with suspicion and has targeted family members who still live in Afghanistan. “The Taliban sees me as an enemy, and they say they see me as an American slave.”

After Saboory left, Taliban officials searched his parents’ apartment and punched his father in the face when he refused to disclose his son’s whereabouts, Saboory said. His asylum application includes a photo of his father’s bruised eyes.

“I feel very bad to use my father’s picture for my case,” he said. “I know my life is in danger and my family is in danger because of me.”

Ruminski is hoping to find pro bono attorneys to accept asylum cases from Afghans in the community, which can otherwise cost $4,000 per person.

In February, Ruminski accompanied The Beatles to a Job Center of Wisconsin event, where specialists helped them set education and career goals. 

They followed up with a trip to McDonalds — to celebrate those goals and new driver’s licenses.

Saboory said he would like to become a dentist. Gholami aims to return to aviation. Ruminski said at least three other evacuees are eyeing commercial trucking — an industry that faces a shortage of 80,000 drivers nationwide. 

“They can bring so much. We just have to embrace that, foster that and care for that,” Ruminski said of those ambitions. “It’s an investment in the future. And quite frankly, it’s the humanitarian thing to do to — to bring diversity into our citizens’ lives.”

This story was produced as part of the NEW (Northeast Wisconsin) News Lab, a consortium of six news outlets covering northeastern Wisconsin. The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates.

‘They can bring so much’: Despite barriers, Afghan evacuees enrich Wisconsin’s workforce is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit newsroom that focuses on government integrity and quality of life issues. Sign up for our newsletter for more stories straight to your inbox.

If life had gone as planned, Maria Alice Lima Freitas would be in medical school, inspired by the career of her father, a surgeon who practiced in Brazil. But instead of changing careers, the 49-year-old therapist retired from University of Wisconsin-Madison. 

Freitas says her undiagnosed Lyme disease has sapped her energy, fogged her thinking and caused pain in her neck, shoulders, hands and right knee. She has three times deferred her entrance into medical school while struggling with myriad symptoms that she attributes to Lyme. 

Most of her doctors say she is mistaken, and that her symptoms, which began in 2015, are due to rheumatoid arthritis. 

Freitas is among thousands of Wisconsinites who say they are suffering from a chronic or long-term version of the disease. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.

Nationally, Lyme disease infects an estimated 476,000 people a year. The Wisconsin Department of Health Services reports the state had 3,076 estimated cases of Lyme disease in 2020 — a doubling in the past 15 years. But medical entomologists say Lyme cases in the state could be 10 times higher than reported.

The medical establishment calls Lyme a short-term disease that usually quickly resolves with antibiotics. Self-described “Lyme-literate” practitioners argue patients like Freitas suffer from a long-haul version of the disease, often called chronic Lyme disease. 

The orthodox position held by most scientific experts and some professional associations — and endorsed by U.S. Centers for Disease Control and Prevention — is that Lyme disease is an acute infectious disease. Clinical diagnosis is based on a “bull’s-eye” rash, other specific symptoms and two-tiered antibody tests. Treatment is by short courses of oral antibiotics. And persistent symptoms rarely occur. 

The standard antibody testing for Lyme disease, cleared by the Food and Drug Administration and endorsed by insurance companies, has been criticized by patients and practitioners as inadequate to detect all cases of the disease. Some practitioners offer alternative tests and treatments, but insurance does not cover the cost of their care. And in extreme situations, such doctors risk disciplinary action.

For most people, Lyme disease is treatable and curable. Most patients report their symptoms cleared after a short course of antibiotics if the infection is recognized and treated early. Another 10-20% of patients develop more severe cases whose symptoms include debilitating pain, fatigue, brain fog, irritability and sleep disorders.

Dark-skinned patients face particular difficulties in getting a Lyme diagnosis. Identifying the red target symbol over light skin tone is easy for light-skinned people, but not so with dark skin tones. A recent UCLA study found that 34% of Black patients with Lyme disease had neurological complications compared to just 9% of whites, suggesting the disease may not have been recognized for many Black patients in earlier stages when it’s easier to treat.

Patients with persistent symptoms struggle to get a diagnosis. Wisconsin Watch has spoken with five people in addition to Freitas whose persistent, subjective symptoms fall outside of the mainstream definition of Lyme as an acute disease. Caught in the middle of the debate, they face emotional, physical, mental and financial exhaustion as they bounce between specialists in search of explanations for their pain.

“The best way I can explain … I’m going through hell, (and) keep on going,” Freitas said.

Diagnoses: Viral infection, arthritis 

Freitas’ Lyme journey began in March 2019 as she battled monthly bouts of fever. She had trouble falling back to sleep late at night. Her hair rapidly fell out. And her body ached and her neck was stiff. She suffered from severe pain in her joints, bones and chest. She also felt tired. At first, Freitas attributed the exhaustion to the bladder surgery she had undergone in April. Fevers hit her in June and again in July.

The unbearable pain made it hard for her to work. It felt like someone was scraping the inside of her right knee with a knife. By August of that year, Freitas took a medical leave, unable to work. 

She checked into a Madison hospital for a couple of days. She said the doctor ordered a variety of tests — but not for Lyme. Freitas was diagnosed with a viral infection, which she said failed to explain her full slate of symptoms, including electric sensations on her face and arms and forgetfulness. 

Four summers earlier, Freitas said she similarly felt eye pain, knuckle pain, fatigue, forgetfulness and headaches. She recalled a rash that had stayed on her leg for at least three weeks. Freitas saw a rheumatologist at St. Mary’s in early July 2015. 

The doctor noticed a red spot on her leg, but it was not the classic Lyme sign of “bull’s-eye” rash. She recalls being tested for Lyme, but the two-step testing came back negative. 

The doctor deemed the red spot a likely spider bite and diagnosed her with arthritis. After taking pain medication for a month, Freitas began to feel better. When more symptoms took hold in 2019, she sensed that viral infection alone did not explain them. Freitas started reading articles about Lyme disease.

Her husband, John Oppenheimer, recalled his wife devouring medical journal articles. Freitas has a bachelor’s degree in biology from UW-Madison and a master’s in marriage and family therapy from Edgewood College. In late 2018, a Florida-based medical school had admitted her to a pre-med program, but her declining health disrupted those plans.

Freitas floated the Lyme hypothesis to a rheumatologist, who felt the joint pain and hand swelling looked more like rheumatoid arthritis (RA). Test results also suggested Freitas may have RA.

Questions about testing

Freitas was not convinced.“I have other symptoms that can’t be explained by RA,” she said. She had read journal articles about the difficulty in Lyme diagnosis, finding the recommended tests are “pretty fallible.”

CDC recommends a two-step testing process for determining whether a person has Lyme disease. Both blood tests must come out positive — or at least indeterminate — for a Lyme diagnosis to be made, the agency recommends.

The two tests measure antibodies that can remain in a person’s system for months or even years and therefore may not indicate an ongoing infection.“It cannot tell when you got infected,” said Elitza Theel, who directs Mayo Clinic’s Infectious Diseases Serology Laboratory.

And the testing has other drawbacks. “It cannot tell what disease severity (is), and it cannot tell whether or not you responded to treatment,” Theel said. “It’s important to remember that we’re not making a diagnosis based on a test result alone.”

She went on to say that the testing also cannot be used to detect other infections that may cause Lyme-like symptoms. “You would have to test for those other infections,” she said. 

Freitas tested positive in the first stage of testing but not the second, showing three bands instead of the five that the CDC says are proof of Lyme disease. 

She asked the rheumatologist to order a different type of test from IGeneX, a California-based commercial laboratory, hoping that the insurance company would at least cover some cost. It didn’t. 

“It’s expensive. I don’t have the money. I’ve been out of my job since August,” Freitas recalled. 

The results from that test came in December 2019. It indicated she did have Lyme disease. However, the IGeneX testing is not conclusive, either, Theel said. “Their criteria are less stringent than the CDC,” she said, “which will lead to a higher number of false positive results.” 

Her rheumatologist refused to accept the result, Freitas and Oppenheimer said, calling it a “shit test.” 

Health woes lead to self-doubt

Oppenheimer said Freitas, once wildly independent, increasingly depends on him as she struggles with her health. The two met when she was a single mom driving a Madison Metro bus and juggling classes at the UW-Madison. Oppenheimer had overheard her speaking in Portuguese, and he tried to put together a phrase that he could speak in the same language. That led to a first date — and in 2011, marriage.

But these days, Oppenheimer said, his wife is “very drained.” 

And even friends and family members question whether the symptoms Freitas describes are real. 

“When everybody is saying that it is not Lyme,” Freitas said, “you start to question yourself.” 

She tried a four-week course of doxycycline, the first-line antibiotics therapy for treating Lyme disease, prescribed by another rheumatologist. She began to feel better, with less pain and less brain fog. However, the symptoms returned once she completed the treatment. She even found herself starting to stutter. 

Oppenheimer himself was diagnosed with Lyme disease as a 19-year-old. At the time, he was living less than 50 miles from Lyme, Connecticut, the community for which the disease was named. 

He described an “arrogant unwillingness” by the medical establishment to recognize what he believes are his wife’s ongoing symptoms of Lyme disease.

“(I’m) just trying to be there with her and seemingly nothing to be able to do, and it’s horrible to watch,” he said.

Lyme controversial from the start

In autumn 1975, Polly Murray, an artist and mother of four in Lyme, reported to the state health department that she and her children were suffering from mysterious maladies, including stiff and swollen knees and rashes. And neighboring children were having similar hard-to-explain symptoms. 

Physicians diagnosed the children with juvenile rheumatoid arthritis. Another mother from the area, Judith Mensch, also contacted the state health department. Finally, the cluster aroused the attention of the Connecticut public health authorities. Yale University’s Dr. Allen Steere, who was still a rheumatologist-in-training, began searching for a cause. 

The following year, Steere told the Journal of the American Medical Association, that he strongly suspected the illness came from some type of infection. 

In the early 1980s, Willy Burgdorfer, a medical entomologist at Rocky Mountain Laboratories, identified the bacterium that caused the mysterious affliction. It was named Borrelia burgdorferi after him. 

Robert A. Aronowitz, a medical historian at the University of Pennsylvania, said the divide between mainstream medicine and Lyme patient advocates started early — with Polly Murray herself.  He noted that Murray created local Lyme support groups starting in the 1980s that began to position themselves “in opposition to the leading Lyme disease physicians and scientists and their view of the disease.”

In her 1996 book, The Widening Circle, Murray warned of long-term cases of the disease. “To me, the fact that some cases seemed to be chronic, lasting for many years, meant that somehow the infection smoldered in some patients and was set off by an immune reaction, perhaps patients were being repeatedly re-infected by the organism,” she wrote.

Two camps, two approaches

Freitas saw a long string of mainstream physicians for a diagnosis — rheumatologists, an infectious-disease specialist, family medicine doctors and emergency room physicians.Then, in the spring of 2020, she began seeing out-of-network doctors in and outside of Wisconsin, and many of them didn’t take insurance.

A survey of more than 2,400 U.S. patients found that 50% of the respondents reported seeing at least seven physicians before a Lyme diagnosis, and more than half continued to suffer symptoms for at least six months after the recommended short course of antibiotics. 

In January 2021, Freitas borrowed $4,000 from her mother-in-law and flew to Washington, D.C., to receive intravenous antibiotic therapy. The treatments failed to help; in fact she dropped 30 pounds in a matter of weeks. “I thought I was gonna die because I couldn’t eat,” Freitas said. 

She continued to search for doctors. 

On May 19, Oppenheimer and Freitas drove from their house in a quiet neighborhood in Middleton to northern Wisconsin. 

They were on their way to a virtual visit with Dr. Samuel Shor. The Virginia-based internist works for the Tick-Borne Illness Center of Excellence in Woodruff, Wisconsin. Shor, who also is a clinical associate professor at George Washington University, sees patients in Wisconsin via telemedicine, charging $490 for an initial consultation. 

As the former president of the International Lyme and Associated Diseases Society (ILADS), Shor adheres to diagnoses and treatments that the mainstream Infectious Diseases Society of America (IDSA) generally rejects. Dr. Paul Auwaerter of Johns Hopkins Medicine, a former president of IDSA, calls physicians who treat patients for chronic Lyme “antiscience” and a danger to patients and the medical profession.

“It is disappointing to me that people resort to name-calling from either side,” 

said Dr. Elizabeth Maloney, a family physician from Minnesota who helped write the latest guidelines on Lyme disease treatment. “It’s not helpful, and it does undermine patients’ confidence in our profession as a whole.”

The guidelines issued by IDSA maintain the group’s recommendations against antibiotic treatment for patients with persistent symptoms. It has also removed a previously endorsed term — Post-Treatment Lyme Disease Syndrome (PTLDS) — for defining patients with persistent symptoms after short courses of antibiotic therapies. 

“They don’t even want to go into that quagmire anymore,” said Maloney, who leads the Partnership for Tick-Borne Diseases Education. “They do not really talk about what to do with patients who do not fully recover. It’s kind of a black box.”

The disease is complex. If untreated, Lyme can have wide-ranging effects on skin, joints, nervous system or the heart. The infectious agents attack connective tissue and can move around and “find their own way to … various parts of the body,” said Dean Nardelli, an associate professor who studies later-stage Lyme disease at the UW-Milwaukee’s Biomedical Sciences Lab Programs.

In a 2019 article in the journal Antibiotics, Shor said chronic Lyme is “often dismissed as a fictitious entity.” He and his co-authors consulted more than 250 peer-reviewed articles pointing to “a multisystem illness with a wide range of symptoms,” either continuously or intermittently, lasting at least six months. 

“Signs and symptoms may wax, wane and migrate,” they wrote. 

Other pathogens to blame?

Shor and his co-authors, including Maloney, propose that the lingering symptoms are caused by several pathogens from the Borrelia burgdorferi family or other tick-borne pathogens. 

Nardelli said there’s a variety of symptoms and severity in Lyme disease patients, and those symptoms can be caused by the inflammatory responses against the microbes. 

“Inflammation is a huge part of the immune response. It’s one of the frontline defenses we have, and it has this negative connotation, but it is intended for good,” he said. “Your immune response (is) trying to kill the bug … and in doing so, can cause damage, essentially.”

Some theories suggest that variants of the Lyme bacteria are resistant to antibiotics. Others argue that chronic Lyme is caused by a powerful immune reaction — or it may even trigger an autoimmune disease. The central neural networks may be altered, having a significant impact on symptoms — or a combination of these factors. 

Nardelli is investigating how the immune system is affected by the Lyme bacterium, research that could contribute to treatments for people with prolonged reactions after the infection. He said science can be a slow process of acquiring new knowledge, and it’s “tough” for patients who are suffering with no clear answers. 

That can lead them to seek out untrustworthy practitioners or fall for costly treatments that don’t work. “You go out and find doctors that diagnose everything as Lyme disease,” Nardelli said. 

For complicated cases, Maloney said physicians should approach patients as a detective would, whittling away other possibilities until getting to a diagnosis.

“The whole goal is to get people the right diagnosis so they can get the therapy that they need,” she said.

Freitas said she trusts Shor, who has embraced her IGeneX test results for Lyme and has also diagnosed her as having several afflictions: babesiosis, which has some of the same symptoms as Lyme and can come from the same ticks; bartonella, also known as cat scratch fever; and chronic fatigue syndrome. 

Alternate treatments offer relief

Freitas now takes Epsom salt baths on Mondays, Wednesdays, and Fridays and uses an infrared sauna for “detoxification,” saying it makes her body feel better.

And she now takes 30 pills each day, interspersing antibiotics with herbs and dietary supplements, which cost upwards of $1,200 a month. 

“For babesia … I’m taking liquid gold … Mepron,” said Freitas. “It’s really expensive. It’s 50 bucks for 80 milliliters, which lasts two weeks.” 

She gave up dairy, gluten, and sugar to reduce inflammation. 

And she meets with Shor monthly online from her house at a charge of $250 per visit, which insurance does not cover.

“It was to me (that) the money is well paid. I’m having peace of mind,” Freitas said. “I feel like I’m getting better.” 

Freitas said she started gaining back some weight in June. Her mind has become a bit clearer. Her long-term memory seems back a bit, too. “I’m getting out of the graveyard,” she said.

Said Oppenheimer to his wife: “What I’m seeing is you’re better relative to the beginning of (2021), because you’re still not good.”

For Freitas, the struggle for recognition — and relief from her symptoms — continues. She and her husband remodeled their home over the summer, refurbishing their two-story house with a plan to rent out one level to pay for Freitas’ ongoing treatments. 

And she still holds out “a little flame of hope” of one day becoming a doctor — just like her dad.

Former WPR/Wisconsin Watch reporter Bram Sable-Smith contributed to this story. The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates. 

Doctors debate, patients suffer: The fight over chronic Lyme disease in Wisconsin is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Wisconsin Watch is a nonprofit newsroom that focuses on government integrity and quality of life issues. Sign up for our newsletter for more stories straight to your inbox.

In 1970, a Wisconsin dermatologist first documented what would soon be called Lyme disease across the country.

Dr. Rudolph J. Scrimenti, a dermatologist in Milwaukee, reported the first case in the United States of the signature rash of early Lyme disease.

The patient had removed a tick from his skin three months earlier in north-central Wisconsin. Scrimenti treated the patient with penicillin based on medical literature he had read out of Europe. 

“The patient became symptom-free within 48 hours,” he wrote in the journal article in 1970. “There has been no recurrence of symptoms for the past year.” However, Scrimenti said the cause of the disease was “uncertain.” 

Scrimenti, who died in 2013, later began treating patients in Milwaukee and served on the review board of a journal on tick-borne diseases in the early 1990s. 

Over the past three decades, Susan Paskewitz, a medical entomologist at University of Wisconsin-Madison, has documented the growing prevalence of ticks in Wisconsin.

Paskewitz found that deer ticks, also called black-legged ticks, have moved steadily from northwest to southwest, and then into the central and eventually slowly into the eastern and southern Wisconsin.

“They invaded our state entirely,” Paskewitz said in a 2021 Wednesday Nite @ The Lab episode. She said the regeneration of forests decimated by logging in the early 1900s and rebounding of the deer population are the main drivers in Wisconsin. Paskewitz said warming temperatures caused by climate change are expected to lengthen the tick season and accelerate their northward march into Canada.

Xia Lee, a tick biologist in Paskewitz’s lab, has studied the insects for more than a decade. Lee is soft-spoken, but when he talks about the parasites, he marvels at their “beauty.” 

Lee explained that the Lyme-bearing ticks live between two and three years. They acquire blood meals from animal hosts at each stage of life — larva, nymph and adult. 

“These guys are always born uninfected, and they have to pick up the infections when they feed on their first animal (hosts),” Lee said, pointing to the lab-raised larvae.

He said that larvae pick up pathogens during their first blood meal from infected small mammals, such as the white-footed mouse. They subsequently transmit those pathogens during their second meal as nymphs and their third meal as adults.

A Yale study has found that about 20% to 30% of the black-legged tick nymphs carry the bacterium that causes Lyme disease in southern New England, while the rate of infected adult ticks is 30% to 50%. The tick can also be infected with other microbes at the same time, carrying and transmitting other pathogens and making people sick with Lyme and other tick-borne diseases such as anaplasmosis and babesiosis.

Once an infected tick latches on a human, it falls off when full. If a tick is removed within 24 hours, the likelihood of transmission is very low, Lee said. However, when a poppy seed-sized nymphal tick firmly attaches itself to the skin, detecting and removing it is difficult, increasing the risk of infection. 

Lee noted that Wisconsin never got the proper recognition as the site of the first case of the disease. That honor went to the town of Lyme in Connecticut, which remains one of the states with the highest incidence rates in the country. 

“We like to joke about it and say that Wisconsin was actually the first state where Lyme disease was detected,” he said, “but we never got the glory for naming (it).” 

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates. 

The history of Lyme disease has a Wisconsin chapter. It’s still being written. is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

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As she counted down the final hours of her stay at Fort McCoy, a 60,000-acre Army base in rural Monroe County, Wisconsin, Lamha Nabizada searched for an interesting place to pose for a photo at this reporter’s request. The task wasn’t easy.

“Everywhere is the same thing, same barrack — white, white barrack,” the 27-year-old told Wisconsin Watch.

Venturing outside into frigid air, she posed in front of a flagpole and gun turret. White letters spelling FORT McCOY blended into the snow blanketing the ground.  

It was Feb. 6, the day before Nabizada and her 22-year-old brother Masroor would fly from Minneapolis to Dulles Airport in Virginia, and then travel to Maryland — continuing a resettlement journey that began last August when the Taliban took over Afghanistan’s capital of Kabul, accelerating a humanitarian crisis. They were among tens of thousands airlifted from the country with passports, legal documents and little else. 

Nearly six months later, the siblings were among the last to leave Fort McCoy, which housed as many as 12,600 Afghans at its peak. 

Lamha felt mixed emotions as she prepared to leave the base: excitement to ditch the monotony, hope for new opportunities — and anxiety about moving to a place where she doesn’t know anyone.  

“I don’t know what will happen in the future,” she said. 

On Feb. 15, Fort McCoy became the seventh of eight U.S. military installations to send its final evacuees to host communities. Four days later, the eighth base — in New Jersey — cleared out the last of the 76,000 total evacuees who arrived for the largest American resettlement operation since the Vietnam War. 

Through Feb. 23, Wisconsin had resettled about 820 of the 850 Afghan evacuees currently slated for the state, according to Bojana Zorić Martinez, director of the Wisconsin Department of Children and Families’ Bureau of Refugee Programs. 

Zorić Martinez said the difficulties of serving so many evacuees at once has prevented resettlement from proceeding more quickly. Aside from housing, they need Social Security numbers, jobs, food and other basic items — and help applying for permanent residency. 

Evacuees are eligible to apply for benefits available to refugees, according to the federal Office of Refugee Resettlement. That includes job preparation, English language training and medical aid. They may also be eligible for mainstream federal benefits such as Medicaid and food assistance. 

Zorić Martinez said the system shrunk under Trump, who enacted more than 1,000 immigration-related policies that largely slowed new arrivals, according to the Immigration Policy Tracking Project. That included slashing the country’s refugee cap each year he was in office, which meant less money for resettlement agencies.

“(It was) just very much a concerted effort to damage the immigration, (and) the refugee programs in the country,” she said. “We are now seeing the consequences of that.”

Family separated

Lamha and Masroor Nabizada moved to the Washington, D.C. suburb of Rockville, Maryland — sharing two hotel rooms with their parents, who left Fort McCoy a week before the siblings. 

The family’s lengthy to-do list includes securing stable housing, jobs and permanent residency as the federal government processes a crush of applications from the Afghans admitted under the two-year humanitarian parole program. 

If only the Nabizadas could confront those challenges together. 

Lamha and Masroor’s oldest sibling, 34-year-old Khushnood — who served as a diplomat, owned a news outlet and was on a Taliban hit list in Afghanistan — now lives 120 miles away in Richmond, Virginia. That’s where he, his pregnant wife Razia and their three children were sent when they left Fort McCoy in December.

The International Rescue Committee (IRC), the nonprofit resettlement agency handling the Nabizadas’ cases, did not make any employees available for an interview. In a written statement, the agency said it could not comment on the family’s separation but cited the difficulties of resettling thousands of evacuees in communities that lack affordable housing — on top of trying to help refugees from other countries.

“The resettlement of Afghans is one of the most complex, massive, and unprecedented logistical and humanitarian challenges in American history,” spokesman Stanford Prescott said in the statement.

IRC has resettled 1,750 Afghans in Virginia and Maryland alone — a 310% increase from the number of refugees it served in the previous fiscal year. The full Nabizada family requested resettlement in Virginia because of its vibrant Afghan communities, including some of their own friends and family. But housing quickly filled up. 

“Many Afghan cases initially assigned to resettlement agencies in Virginia were reassigned to other states where more capacity was available to serve them, and there were additional housing and job opportunities,” the IRC statement said. 

Ending up in Maryland leaves Lamha distraught. 

“We don’t have any kind of a community,” she said. “We wanted to be housed together with our community and our family.”

Her story is typical within the overwhelmed, understaffed resettlement agencies, resettlement officials say.   

“They’re splitting up families because they don’t have the room,” said Sheila Badwan, vice president of the Milwaukee chapter of the Hanan Refugee Relief Group and a national executive committee member. “It’s really chaotic right now.”

Badwan’s group has helped find homes and supplies for 60 families resettling in the Milwaukee area, which has received a total of 400 Afghans. 

Long wait at Fort McCoy

Throughout much of 2021, Lamha Nabizada had no sense that her life would dramatically change. Holding a master’s degree in business administration from Afghanistan’s largest private university, she was living and working in Kabul as a business manager for an insurance company.

By mid-August, she and her family had left Afghanistan with little more than their lives.

Like other evacuees, the Nabizadas underwent security vetting overseas. After U.S. Embassy officials helped them reach the Kabul airport, they flew to Qatar, Germany and eventually the United States. Once at Fort McCoy, they waited. And waited — for nearly half a year. 

Nabizada, who speaks English, fought boredom by teaching the language to 15 Afghan children. In October, she volunteered for an on-site legal clinic sponsored by the United States Conference of Catholic Bishops, helping fellow evacuees prepare paperwork and translate documents. 

Winter in Wisconsin brought snow, bitter cold and fewer daylight hours, leaving Nabizada and others mostly stuck indoors. After working days at the legal clinic, she spent nights reading borrowed books, including the classic “Stuart Little,” the philosophical collection “This I Believe” and the Nicholas Sparks novel “See Me.”  

Lamha and Masroor Nabizada said Fort McCoy treated them well. They received enough food but not always enough winter clothing. The base offered movie nights, indoor recreation, sewing rooms, dance classes and other events. “At least they tried, and they did as much as they could,” Lamha said. 

Still, base life felt like a “jail,” Masroor said. Fearing COVID-19, he rarely spent time outside of the barrack and dining facility.

Each month, the family heard predictions that they would leave soon.

‘Why couldn’t they bring them here?’

That day first arrived for Khushnood’s side of the family, who may have received medical priority because of Razia’s pregnancy. In late December, they arrived in Richmond. An estimated 8,500 Afghans have laid roots in Virginia since 2016, according to the state refugee resettlement program. 

The rest of the family would not be coming. 

“I don’t know what happened at the last minute,” Khushnood said. “Why couldn’t they bring them here? That’s a question for me.”

The family could not simply leave Fort McCoy early to follow Khushnood to Richmond — outside of the IRC-organized resettlement process. That could have jeopardized the crucial federal aid allocated for Lamha, Masroor and their parents. And in early December, IRC’s Richmond office said it would no longer serve new “walk-in” evacuees arriving unscheduled to the city, unless immediate family in the area provided permanent housing.

Without jobs and few possessions, the family couldn’t afford to risk losing financial assistance, sparse as it is. 

The federal government provides resettlement agencies $2,275 per evacuee for housing, job training and other expenses over three months, including $1,050 that stays with the agency to cover administrative costs. Each evacuee gets a portion of the remainder in cash, which is not adjusted for differences in cost of living. 

The four Maryland Nabizadas collectively received $1,000 in pocket money, and IRC is reserving the rest of the funds to pay their rent, Lamha said. She’s not sure how the funds will stretch far enough in such an expensive region of the country.

“No one is clarifying to us,” she said.  

IRC has delivered some food, but it’s not enough. And the nearest grocery store is a 20-minute walk away.

Still, the family remains generous. When a photojournalist visited Feb. 22 on Wisconsin Watch’s behalf, the family offered her one of their last pieces of fruit.  

In Virginia, Khushood said his five-member household received $1,055 in total cash, and IRC is covering three months of rent at their three-bedroom townhouse at $1,700 per month. 

System weakened, then shocked

After the country resettled about 85,000 refugees in 2016,  just 11,400 arrived under Trump in 2021 — the fewest since the modern refugee program took shape in 1980, according to the National Immigration Forum. President Joe Biden has since raised the ceiling to 125,000, which does not include Afghan evacuees. 

The resettlement system includes federal and state agencies and national and local nonprofits. With less work under Trump, the nine national refugee nonprofits scaled down operations to survive — with some closing offices and laying off staff. 

Then came Biden’s troop withdrawal, which allowed the Taliban to quickly take Kabul, necessitating a last-minute push to airlift evacuees to safety. Biden’s critics say he miscalculated the strength of the Taliban — and that he should have begun the evacuation sooner. 

The large evacuation shocked a shrunken system that will take years to rebuild, Zorić Martinez said.

“I don’t think we’re even halfway to where we need to be,” she added. 

Grassroots groups are helping to fill the gaps — aiding in housing searches, collecting donations and organizing friendly welcomes from community members. But questions loom for many newly arriving Afghans, including when they will find housing and whether they will gain permission to stay permanently.       

“The government has to provide more resources, if we’re going to ensure that everybody has their basic needs met during this transition time, and it’s wonderful to see people in the community coming together,” said Erin Barbato, director of the Immigrant Justice Clinic at the University of Wisconsin Law School. “But that’s not going to solve the problem for everybody.”

The legal clinic is helping evacuees file for asylum and training attorneys to represent them in that process — positions that are in short supply. Barbato and other immigration experts fear some people will fall through bureaucratic cracks unless the federal government takes action to stabilize the system. 

By Jan. 31, about 2,200 evacuees remained at Fort McCoy, according to base spokesperson Lt. Michael Miller. A U.S. State Department push helped empty the base within two weeks — even though resettlement agencies had yet to iron out details in some host communities. 

On Feb. 7, Lamha and Masroor Nabizada boarded a 2 a.m. bus with 40 other Afghans. They traveled through the darkness to their next stop, the Minneapolis airport.  

Searching for housing 

Khushnood Nabizada worked quickly — and independently — once he arrived in Richmond in December. He applied for a driver’s license, set up health care for Razia, shopped for groceries and enrolled the children in school while beginning his job search. 

His IRC case manager didn’t visit but called a few times to check up on him, Nabizada said.

“They don’t have enough people to work on refugee cases,” he said. “That’s realistically a big mess. Then, they can’t meet the minimum expectations of what should be done.”  

He used an online search tool to find the townhouse he’s renting.

Securing housing is particularly tough for evacuees — people who arrive with no credit or rental history, said Badwan of the Hanan Refugee Relief Group. Nabizada said his landlord was generous enough to choose him over applicants with a better financial track record. 

Meanwhile, inflation is pushing rent higher, worsening chronic housing shortages nationwide.  That includes Milwaukee, where more than half of tenants are “rent burdened,” meaning that they spend more than 30% of their income on rent, according to a 2021 Wisconsin Policy Forum analysis. 

Badwan said her group, partnering with two local resettlement agencies, has built relationships with landlords and tapped a network of over 100 volunteers to help Afghans find homes in Milwaukee. 

But many evacuees across the country are still living in cramped hotels continuing their housing search. That includes the Nabizadas in Maryland, where the housing crunch is particularly serious. The Washington Post reported in February that about 40 Afghan families were living in a Baltimore-area hotel since October — still waiting on the IRC to locate permanent housing that they considered safe. 

The Nabizadas turned down one option — a two-bedroom apartment in a suburban apartment complex — after Afghans living there complained about loud noises that Lamha feared would disturb her parents.  

She is searching for a better match, but that’s difficult without a car, computer or knowledge of the area. The family may be moved to the rejected apartment unless they find another option soon.

Her chief concern, however: the 18 months remaining to secure permanent residency.

Applying to stay

Nearly 37,000 humanitarian parole evacuees could qualify for a Special Immigrant Visa, while some of the remaining 36,400 might qualify for asylum, according to a Department of Homeland Security report. 

Lamha is seeking asylum while Masroor is applying for a Special Immigrant Visa due to his previous work as a Department of Defense contractor. 

Barbato, the UW legal clinic director, said the two-year parolee status leaves evacuees vulnerable to future deportation — a potentially deadly proposition. The U.S. asylum program last year faced a backlog of nearly 413,000 applications.

The federal government remains responsible for helping evacuees move through that bureaucracy, Barbato said. That could include enacting an Adjustment Act to grant permanent legal residency specifically to Afghan evacuees. 

Congress has historically passed such laws to protect evacuees from U.S. military conflict zones, including in Vietnam and Iraq.

Echoing immigration advocates and veterans, Barbato said an Afghan Adjustment Act, which has yet to be introduced in Congress, could pave a safer, quicker path to citizenship. Lawmakers must also inject more resources into the immigration bureaucracy, she added. How these resources are allocated will shape the fate of applicants who have waited years in the queue — as well as new Afghan arrivals. 

New life, new opportunities

Khushnood Nabizada is approaching life in Richmond with optimism and an open mind. 

“I need to build my career here. …Whatever I did in the past in my country is totally irrelevant to what the community here needs,” he said. “Anywhere you’re at peace, that is your home, no matter where it could be.” 

Citing his siblings’ education and work ethic, he expects them to succeed as well.

As winter winds down with promises for warmer weather, the Nabizadas have another reason for excitement: the new baby, due in June.

Despite the stress and distance from Khushnood, Lamha is staying positive and hopes to find freedoms that were absent from Afghanistan. 

“It’s a new opportunity for us,” she said. “And a good thing for Afghan women (in the U.S.) is that we have equal rights.”

This story was reported by Wisconsin Watch reporter Zhen Wang. Eman Mohammed contributed reporting. Wisconsin Watch is a nonprofit newsroom that focuses on government integrity and quality of life issues. Sign up for our newsletter for our stories straight to your inbox.

The nonprofit Wisconsin Watch (www.WisconsinWatch.org) collaborates with WPR, PBS Wisconsin, other news media and the University of Wisconsin-Madison School of Journalism and Mass Communication. All works created, published, posted or disseminated by Wisconsin Watch do not necessarily reflect the views or opinions of UW-Madison or any of its affiliates. Wisconsin Watch is a member of the Trust Project.

‘I don’t know what will happen’: After months at Ft. McCoy Afghan family resettled in separate states is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.