Former President Donald Trump has “concepts of a plan” to replace the Affordable Care Act, also known as Obamacare. At least that’s what he claimed during his debate against Vice President Kamala Harris in Philadelphia tonight. Having access to affordable health care remains a key issue for Americans, according to Pew Research Center.
Moderator Linsey Davis of ABC News asked Trump if he had plans to get rid of the Affordable Care Act, something he vowed and failed to do during his presidency. Recently, Trump walked back this claim, saying he would keep the Affordable Care Act, unless he was able to find a good replacement. Trump, in his response, was very vague, concerning an issue as serious as health care—except he knew Democrats were to blame for any problems.
“Obamacare was lousy. It’s not very good today. And what I said that if we come up with something…we’re going to do it and we’re going to replace it. But remember this, I inherited Obamacare because Democrats wouldn’t change it. They wouldn’t vote for it. They were unanimous. They wouldn’t vote to change it. If they would have done that, we would have had a much better plan than Obama’s.”
Davis followed up, asking if he had a plan in mind to replace it. Trump seemed unable to remember that during his time as president, he had the opportunity to create a new health care program, but was unable to do so. Today, he still can’t seem to provide a coherent answer, saying,
“I have concepts of a plan. I’m not President right now, but if we come up with something, I would only change it if we come up with something that’s better and less expensive. And there are concepts and options we have to do that, and you’ll be hearing about it in the not too distant future.”
When New York’s Nassau County signed the first county-level mask ban into law in August, its deputy police commissioner, Kevin Smith, told local news that training was “being conducted [in] the department, which means across ranks.”
But that has not happened, according to the New York Civil Liberties Union. Through an information request reviewed by Mother Jones, NYCLU, a state affiliate of the American Civil Liberties Union, requested policies and training materials used to instruct the county’s police on enforcing the ban. In return, the group received a three-page legal bulletin on the “Mask Transparency Act,” and a six-slide presentation, including a title page, briefly going over the new law. The presentation reiterates the bulletin’s explanation of the law, as well as saying police officers still need to follow Fourth Amendment protections against unreasonable search and seizure—but there is little else.
“There’s none of the sort of type of training and guardrails you would expect to see in a police procedure or in a training module around how you interact with members of the public,” said Beth Haroules, a senior staff attorney at NYCLU.
The very brief materials also do not address people’s rights in protecting their health information from police, which also underscores why police officers cannot independently determine whether someone is wearing a mask for health reasons. “You’re not allowed to interrogate somebody about their private health information, or family member’s or loved one’s health information,” Haroules continued, “including whether or not you’re just Covid cautious,” something county law enforcement seems to have overlooked altogether.
The Nassau County Police Department did not respond to Mother Jones’ request for comment on the extent of its training.
The law allows Nassau County police four reasons to question people about their mask-wearing—among them, when they are gathered in a public space with other people who are wearing masks. Haroules notes that this seems to clearly target people at protests, especially recent waves of pro-Palestinian protests, some of whom may be wearing masks for health reasons—but the implications for who the ban could suddenly impact would be much wider.
“You could be waiting at a bus stop at Nassau County with a mask on, and then, suddenly, three or four more people show up,” Haroules said. “You’re all subject to arrest or interrogation as to whether or not you have a right to wear that mask.”
As Mother Jonespreviously reported, fear of being interrogated by police over masking has led Disability Rights New York to sue Nassau County in federal court on behalf of two disabled residents.
Since the mask ban law was enacted, two people have been charged with misdemeanors for violating it, punishable by up to a year in jail and a $1,000 fine. In both cases, Haroules says, “there probably wasn’t probable cause to arrest either gentleman.”
Choosing to wear masks, as Haroules told Mother Jones she herself continues to do on public transportation, is an individual decision which mask bans threaten. Having other community members “enforcing the mask ban by threatening to call police,” Haroules says, “really suggests that there’s a societal problem.”
On September 10, Vice President Kamala Harris and former President Donald Trump will debate each other for the first time. Amid weeks of contention over the debate’s rules, it has been reported that ABC News, the host network, informed both candidates’ camps that their microphones will be muted when the other is speaking. While Trump’s campaign has agreed to the terms, Harris’ camp reportedly has not.
Both Harris and Trump (though not his team, as my colleague Julianne McShane has written) want to have unmuted mics. But ABC’s rules are not unprecedented—Trump and President Biden’s debate this summer also featured muted mics.
Harris and her team’s argument for unmuted mics seems to rely on letting Trump embarrass himself: Speaking over a debate opponent when it is the other person’s turn to talk does not exactly look professional. But there is a more serious reason for Harris to reconsider her stance: ensuring that one person talks at a time will make the event more accessible to some disabled viewers.
For people who need live captioning during the debate, constant changes in speakers are challenging to follow. In the UK, the BBC uses different colors to indicate different speakers when multiple people are talking—but US news networks have yet to catch up. It is also considered best practice for American Sign Language interpretation to only let one person speak at a time, which makes interpreters’ jobs more practical.
More than 48 million Americans are hard-of-hearing, 11 million of whom are Deaf or have significant loss—not a small number of potential viewers. Captions can also be helpful for people with other disabilities, including conditions that affect cognition such as ADHD and Long Covid.
Political debates can be informative—or just entertaining, if your mind is already made up. If Harris wants an easy win for disability rights, she doesn’t need to hold out on this rule.
All but three US states have very high or high levels of Covid-19 in their sewage right now, according to the CDC. Due to a drop in efforts to count individual cases, that data is the most accurate way to paint a picture of the current extent of Covid cases—and it’s bad.
In addition to wearing respirators, getting the updated Covid vaccine (mRNA shots were approved last week, and the Novavax vaccine this week) is an important way to reduce one’s chance of getting the infectious disease. Even if a person contracts it, the shot will reduce their risk of death and developing Long Covid.
But for uninsured and underinsured Americans, the vaccine has just gotten significantly more costly. On August 22, the CDC sunsetted its Bridge Access Program, which provided free Covid vaccines to 1.5 million Americans over the past year. A CDC spokesperson told Mother Jones that the sunsetting was a consequence of the new 2024-2025 vaccines being approved—which meant the 2023-2024 vaccines could no longer be administered. But many people did not know that the program would only cover the vaccine approved last year—just that it would end in August, potentially after the new shots became available. The CDC’s page on the program, which was live until some point Friday, did not clarify any of this information.
“For every step that you add in the process of trying to get a vaccine, you’re going to lose people.”
A rhetorical staple of the Biden administration is that it’s ensured people have the tools to fight Covid—but that is not the case for peopleunable to afford the updated vaccine out-of-pocket, which typically costs around $200.
Elizabeth Jacobs, an epidemiologist and professor emeritus at the University of Arizona, has studied the reasons why people do not get Covid-19 boosters. One reason, Jacobs says, is the logistics and challenges of getting the vaccines.
“For every step that you add in the process of trying to get a vaccine, you’re going to lose people,” Jacobs said.
Even before the end of the Bridge Access Program, getting vaccines has not always been easy. One person who spoke to Mother Jones said that he had to explain how the Bridge Program worked to pharmacists before he could get vaccinated for free.
The CDC, however, did announce that it has allocated $62 million for state and local health departments to buy vaccines for uninsured and underinsured people. However, the current surge and delays in implementation means people may fall by the wayside.
“I do have faith that $62 million will be used well to provide vaccines,” says Emory University epidemiology professor Jodie Guest. “Unfortunately, we just don’t have the details for how that will be done yet.”
Guest also notes that the up-front cost of subsidized vaccines is less of a burden on the healthcare system than a spike in the number of people severely ill with Covid. It is hard to know just how many people are currently hospitalized with Covid complications, as hospitals have not been required to report cases to the federal government since May. But the requirement to report respiratory viruses in hospitals will resume on November 1.
Since early in the pandemic, research has highlighted the risks of severe illness that low-income people, who are more likely to have chronic health conditions, face with Covid. These risks remain, and while it’s important that people with Medicare and Medicaid will be able to get updated vaccines, so should low-income people without health insurance.
“Vaccines are only as good as how vaccinated our immediate communities are.”
Children whose guardians are uninsured and underinsured will still be able to get vaccinated for free through the Vaccines for Children program, initially established by Congress in 1993 to make sure more kids were being vaccinated against measles. Chrissie Juliano, the executive director of the Big Cities Health Coalition, says that the ending of the Bridge Access Program underscores the “need for a permanent Vaccines for Adults program.” The Biden administration has proposed funding a Vaccines for Adults program in its proposed budget for the next fiscal year, but Congress could still reject it. In the meantime, Guest also recommends that people search for coupons at pharmacies that could bring down out-of-pocket costs.
“Vaccines are only as good as how vaccinated our immediate communities are,” Juliano said. “Vaccines protect us when we individually get it, but we really depend on our neighbors, our family, our friends [and] our classmates to also be fully vaccinated.”
While Covid-19 vaccines can reduce transmission, they are not perfect yet, which highlights the importance of wearing N95 and KN95 masks during surges, especially in medical settings, while traveling, and in other crowded indoor settings.
Jacobs finds it frustrating that masking is no longer promoted by public health agencies as it has become further politicized. “It is an established fact that respirators or high-quality masks reduce your risk significantly of becoming infected,” Jacobs said.
Nevada State Sen. Robin Titus—at the time a member of its state House—received an email from a speech pathologist in rural Nevada. The pathologist and his students had noticed that the state constitution used the phrase “deaf and dumb” to describe people who were deaf or hard of hearing.
“He said, ‘Hey, this is just wrong. We shouldn’t be using this terminology anymore,’” Titus, the Nevada Senate’s Republican minority leader, told me. Where people with disabilities are concerned, Sen. Titus says official language should not put “some negative connotation on what their needs are,” as such terms do.
Now that the bill has passed Nevada’s House and Senate unanimously in two consecutive sessions—a prerequisite to place an amendment on the state ballot—Nevada voters will decide whether to remove the words “insane,” “feeble-minded” and “dumb” in describing, for example, programs that help disabled people find employment, replacing them with more modern terms.
“This ballot measure is also creating public awareness of disability issues and the value of people with disabilities.”
Nevada is one of 16 states, including Colorado and Mississippi, that still officially use the word “insane” to refer to people with mental illness in their constitution. Washington was the first state to remove the word from its constitution via a ballot measure, in 1988. Ableist language in government also remains an issue at the national level, with a Senate bill being introduced this year to try and get a slur for people with intellectual disabilities out of the US Code.
Nevada is not the only state where voters will decide whether to remove ableist language in November. A similar measure in North Dakota—like Nevada’s, introduced by a GOP legislator with unanimous bipartisan support—would update names such as “state hospital for the insane” with language like “for the care of individuals with mental illness.”
“This is an important step for our state as it signifies that how we talk about individuals with disabilities matters and all individuals deserve to be treated with dignity and respect,” Veronica Zietz, the executive director of North Dakota’s Protection and Advocacy Project, wrote in an email. “This ballot measure is also creating public awareness of disability issues and the value of people with disabilities.”
StateSen. Titus was not surprised to find bipartisan support for her Nevada bill. “We can identify problems, but we don’t always have a pathway” to solving them, Titus said. “Both parties,” she said, “will get on board” when a solution piques their interest.
There is no formal opposition to either state’s ballot measures, which Titus and Zietz say people with disabilities have expressed support for. Local press and anti-DEI national commentators have not criticized either proposal, signaling that, as once was the norm with the enactment of laws like the Americans with Disabilites Act, the push for disability rights can be bipartisan. Many Republican-leaning states, such as Alabama and Texas, do not have ableist language like “insane” in their state constitutions.
However, even within disability communities, there are breaks in support of language choice: the Nevada measure would switch its language on disability in the constitution to person-first language, as in “people who are autistic”—but there is growing support for identity-first language, as in “autistic people,” among disabled people.
The outcomes of both ballot measures come November could be indicative of how much public views on the harms of ableist language have changed. Back in 1998, Michigan voters were asked whether to change the word “handicapped” to “disabled” in its state constitution. The measure passed, but with less than 60 percent of the vote.
Sen. Titus told me that she hasn’t heard any real pushback, either, and believes that “the time has come for us to update our language for all disabilities.”
Nevada State Sen. Robin Titus—at the time a member of its state House—received an email from a speech pathologist in rural Nevada. The pathologist and his students had noticed that the state constitution used the phrase “deaf and dumb” to describe people who were deaf or hard of hearing.
“He said, ‘Hey, this is just wrong. We shouldn’t be using this terminology anymore,’” Titus, the Nevada Senate’s Republican minority leader, told me. Where people with disabilities are concerned, Sen. Titus says official language should not put “some negative connotation on what their needs are,” as such terms do.
Now that the bill has passed Nevada’s House and Senate unanimously in two consecutive sessions—a prerequisite to place an amendment on the state ballot—Nevada voters will decide whether to remove the words “insane,” “feeble-minded” and “dumb” in describing, for example, programs that help disabled people find employment, replacing them with more modern terms.
“This ballot measure is also creating public awareness of disability issues and the value of people with disabilities.”
Nevada is one of 16 states, including Colorado and Mississippi, that still officially use the word “insane” to refer to people with mental illness in their constitution. Washington was the first state to remove the word from its constitution via a ballot measure, in 1988. Ableist language in government also remains an issue at the national level, with a Senate bill being introduced this year to try and get a slur for people with intellectual disabilities out of the US Code.
Nevada is not the only state where voters will decide whether to remove ableist language in November. A similar measure in North Dakota—like Nevada’s, introduced by a GOP legislator with unanimous bipartisan support—would update names such as “state hospital for the insane” with language like “for the care of individuals with mental illness.”
“This is an important step for our state as it signifies that how we talk about individuals with disabilities matters and all individuals deserve to be treated with dignity and respect,” Veronica Zietz, the executive director of North Dakota’s Protection and Advocacy Project, wrote in an email. “This ballot measure is also creating public awareness of disability issues and the value of people with disabilities.”
StateSen. Titus was not surprised to find bipartisan support for her Nevada bill. “We can identify problems, but we don’t always have a pathway” to solving them, Titus said. “Both parties,” she said, “will get on board” when a solution piques their interest.
There is no formal opposition to either state’s ballot measures, which Titus and Zietz say people with disabilities have expressed support for. Local press and anti-DEI national commentators have not criticized either proposal, signaling that, as once was the norm with the enactment of laws like the Americans with Disabilites Act, the push for disability rights can be bipartisan. Many Republican-leaning states, such as Alabama and Texas, do not have ableist language like “insane” in their state constitutions.
However, even within disability communities, there are breaks in support of language choice: the Nevada measure would switch its language on disability in the constitution to person-first language, as in “people who are autistic”—but there is growing support for identity-first language, as in “autistic people,” among disabled people.
The outcomes of both ballot measures come November could be indicative of how much public views on the harms of ableist language have changed. Back in 1998, Michigan voters were asked whether to change the word “handicapped” to “disabled” in its state constitution. The measure passed, but with less than 60 percent of the vote.
Sen. Titus told me that she hasn’t heard any real pushback, either, and believes that “the time has come for us to update our language for all disabilities.”
Last week, Nassau County, on New York’s Long Island, became the first county in the US to ban the public wearing of masks—with very vague health exemptions—since the start of the Covid-19 pandemic. The Nassau ban follows a similarly controversial statewide mask ban in North Carolina that took effect in June.
Several concerns have been raised about Nassau’s mask ban, including that police officers—not experts in public health or medicine—are tasked with determining whether an individual is wearing a mask for valid health reasons. But another is that the pandemic is not over, and wearing medical masks while grocery shopping or even at a protest is meant to limit exposure to the disease—and some residents expect a ban to lead to harassment by local anti-maskers.
The county’s move has prompted the first class-action lawsuit against a mask ban, filed Thursday in federal district court by Disability Rights New York against Nassau County and county executive Bruce Blakeman on behalf of two anonymous residents.
“This mask ban poses a direct threat to public health and discriminates against people with disabilities,” said Timothy A. Clune, the group’sexecutive director, in a press release.
One of the residents, who lives with cerebral palsy and asthma, said they were stopped and questioned by other residents after the ban was passed—even before it was enacted—and, according to the complaint, now “fears that they will be arrested…because there is no standard for the police to follow to decide if they meet the health exception.”
The other resident represented in the complaint, who masks due to various immune conditions, the complaint says, is now “terrified to go into public wearing a mask.”
Both complainants say that masking has enabled them to participate in public life as disabled people during the ongoing pandemic. Disability Rights NY argues in the suit that the ban as written is unconstitutional, and violates both the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, both key items of federal civil rights legislation, by denying disabled people access to their own communities.
“Local laws that abrogate or curtail rights conferred by federal law are…rendered invalid,” the complaint reads.
Given that Covid can itselfdisable people, Jason Cohen, a neurologist who lives in Nassau, has major concerns about how the mask ban will play out.
“I care for many patients who have brain fog from Covid and many more who are at higher risk of brain damage from Covid,” Cohen said. “Anything that discourages masking among those who want to mask is a travesty and public health disaster.”
Cohen also says that governments “should not force people to disclose their personal medical information to police in order to negotiate their way out of being accused of a crime.”
Some disabled people nevertheless have concerns about the suit itself. Ngozi, a Black disabled person who lives just over the county border in Queens, is concerned that it will end in “some type of negotiation with the state that results in keeping the law intact,” which would maintain the risk of racial profiling.
“I do not have faith in the state,” Ngozi said. “A lawsuit will not resolve the threat of mask bans anytime soon.”
Disability Rights New York is requesting a declaratory judgment that Nassau County’s mask ban violates federal law, as well as a restraining order. The complaint in its entirety can be read below.
On Wednesday night, Kamala Harris’ running mate, Minnesota Gov. Tim Walz, addressed the Democratic National Convention. Unsurprisingly, cameras cut to Walz’s family—his wife, Gwen, his daughter, Hope, and his son, Gus.
A few weeks ago, Walz spoke to People about his son, including his life with a non-verbal learning disability, attention-deficit/hyperactivity disorder, and clinical anxiety. It is not clear how Gus’ symptoms affect him, but some people with ADHD experience sensory overload, which could make an environment like the DNC even more overwhelming. (This year, as the 19th reported, the DNC has made noise-cancelling headphones available for those with noise-sensory issues.)
During his father’s speech, Gus was emotional —normal for anyone proud of a parent’s big moment, whether they are neurodivergent or neurotypical. On social media, the right’s response to Gus’ expressions and emotions has been really weird: just go to any replies to videos featuring Gus at the event. Even Ann Coulter chimed in with a tweet she then deleted:
"To prove that people like me aren't the weird ones, I — a 62 year-old woman — am going to bully a 17-year-old for crying out of love for his father" pic.twitter.com/DEcSTNVeMv
In another since-deleted tweet, talk radio host Jay Weber tried to parody Tim Walz, tweeting, “Meet my son Gus. He’s a blubbering bitch boy. His mother and I are very proud.” Weber later said that he deleted his tweet after learning that Gus was disabled—he just meant to attack a 17-year-old boy for being emotional.(Weber has since deleted his explanatory tweet as well.)
Jay Weber has since deleted this post, but sinking to the level of calling the disabled minor son of Tim Walz a “blubbering bitch boy” is definitely one of the most heinous things I have ever encountered on this site.
This isn’t even the sole moment of right-wing weirdness about people with disabilities being spotlighted at the convention. On Monday, the right also attacked Brian Wallach, co-founder of ALS nonprofit I Am ALS, who spoke at the DNC and lives with the condition.
On Wednesday night, Kamala Harris’ running mate, Minnesota Gov. Tim Walz, addressed the Democratic National Convention. Unsurprisingly, cameras cut to Walz’s family—his wife, Gwen, his daughter, Hope, and his son, Gus.
A few weeks ago, Walz spoke to People about his son, including his life with a non-verbal learning disability, attention-deficit/hyperactivity disorder, and clinical anxiety. It is not clear how Gus’ symptoms affect him, but some people with ADHD experience sensory overload, which could make an environment like the DNC even more overwhelming. (This year, as the 19th reported, the DNC has made noise-cancelling headphones available for those with noise-sensory issues.)
During his father’s speech, Gus was emotional —normal for anyone proud of a parent’s big moment, whether they are neurodivergent or neurotypical. On social media, the right’s response to Gus’ expressions and emotions has been really weird: just go to any replies to videos featuring Gus at the event. Even Ann Coulter chimed in with a tweet she then deleted:
"To prove that people like me aren't the weird ones, I — a 62 year-old woman — am going to bully a 17-year-old for crying out of love for his father" pic.twitter.com/DEcSTNVeMv
In another since-deleted tweet, talk radio host Jay Weber tried to parody Tim Walz, tweeting, “Meet my son Gus. He’s a blubbering bitch boy. His mother and I are very proud.” Weber later said that he deleted his tweet after learning that Gus was disabled—he just meant to attack a 17-year-old boy for being emotional.(Weber has since deleted his explanatory tweet as well.)
Jay Weber has since deleted this post, but sinking to the level of calling the disabled minor son of Tim Walz a “blubbering bitch boy” is definitely one of the most heinous things I have ever encountered on this site.
This isn’t even the sole moment of right-wing weirdness about people with disabilities being spotlighted at the convention. On Monday, the right also attacked Brian Wallach, co-founder of ALS nonprofit I Am ALS, who spoke at the DNC and lives with the condition.
Only some40 percent of disabled people are employed. But even that low figure is buoyed by federal laws against employment discrimination—a target of Project 2025, the Heritage Foundation’s roadmap for a right-wing transformation of government by a second Trump White House.
A key institution for the just treatment of disabled workers is the Equal Employment Opportunity Commission, which enforces federal bans on workplace discrimination. Viewed with distaste by many on the right since its founding through the 1964 Civil Rights Act, the EEOC obtained nearly $4 million in 2023 for disabled workers subjected to employment discrimination under the Americans with Disabilities Act.
Discrimination plays a significant role, according to Stetson University College of Law professor Robyn Powell, in unemployment among disabled people, who experience it at a rate about double that of people without disabilities.
In response to substantiated complaints, the EEOC can sue companies for discrimination on the basis of disability—among other categories, including race, gender, and age—and may reach a consent decree, where companies agree to changes in policy and practice, sometimes with financial settlements to the affected workers.
“Consent decrees are really critical in any kind of civil rights monitoring or systemic action.”
“Consent decrees occur when there is a big employer where we’re seeing systematic examples of discrimination,” Powell said. “If we can open up employment opportunities by tackling discrimination, it helps everyone.”
The decrees are quicker, cheaper, and sometimes more effective than lawsuits in combating workplace prejudice. But they have a notable enemy in the Heritage Foundation’s pet project.
Jonathan Berry, who was the chief counsel of Trump’s 2016 transition team and held multiple jobs in his administration, writes in Project 2025 that EEOC “should disclaim power to enter into consent decrees that require employer actions” not already explicitly required by law. Back in 2012, during the Obama administration, a Heritage Foundation employee testified before Congress that federal agencies habitually abuse consent decrees—a viewpoint still clear in Project 2025.
“When we look at [Project 2025’s] specifics around the EEOC and consent decrees,” Powell told Mother Jones, “we can see that they really are trying to attack and decimate disability rights.”
The EEOC and DOJ “have really been critical in protecting the rights of people with disabilities,” says Shira Wakschlag, general counsel and senior director of legal advocacy at The Arc, which serves people with developmental and intellectual disabilities. “Consent decrees are really critical in any kind of civil rights monitoring or systemic action.”
Anti-discrimination consent decrees tend to emphasize reform and accountability, with modest settlements compared to potential legal damages. In one representative case, a government contractor that did not provide accommodations to Deaf and hard-of-hearing employees, and that fired workers on medical leave, agreed to a $1 million settlement with updates to policies on medical leave, reasonable accommodation, and managerial training on the Americans with Disabilities Act, including five years’ monitoring for compliance.
Other types of Justice Department consent decrees also come under attack in Project 2025. Wakschlag says that’s very concerning for disability rights—federal consent decrees are used to fight the continuing institutionalization of disabled people, which violates both the ADA and the Supreme Court’s Olmstead ruling.
Conservative attacks on consent decrees are not exactly new. “We’ve certainly seen pushes to either limit, restrict or get rid of consent decrees in agencies in prior administrations,” Wakschlag says. The Trump administration, notably, put a near ban in place on consent decrees between the Department of Justice and police departments that aimed to address police brutality.
If the EEOC’s ability to give consent decrees was diminished or ended, federal anti-discrimination legislation would be dramatically weakened. The agency could still provide technical assistance—such as instruction on how the ADA protects employees and applicants with visual disabilities, diabetes, or epilepsy—but losing the power to push companies to commit to treat disabled workers better, and monitor their progress, will harm disabled workers and strip them of remedies.
“We would see a huge shift in power dynamics,” Powell said, “where we would see that it would really tilt the balance of power more towards employers in these disability discrimination cases.”
On Thursday, the Biden administration announced that it had negotiated down the cost of the 10 most costly drugs covered by Medicare in a landmark deal. Once the reduced prices are enacted, in 2026, patients are expected to spend billions less out of pocket—as is the US government.
Meanwhile, Kamala Harris is speaking in North Carolina and elsewhere to push a new slate of economic policies, including aggressive action on price gouging, medical expenses, and the rising cost of living. What are the natural next steps for Democrats to build on the momentum of the White House’s Medicare deal?
They’ve got a lot of options. Even among generic drugs, prescriptions cost around three times as much in the US as they do in other countries. Americans across political parties also agree that the federal government negotiating drug costs down is a good thing, according to KFF and other polls.
There are at least four paths the government can take to keep cutting prescription drug costs that are likely to meet with similar public support—so people don’t have to forgo prescriptions they need.
Negotiate Rare Disease Drugs Under Medicare
Rare disease drugs—also known as orphan disease drugs–can cost a pretty penny. In 2019, nearly 7 million Americans on Medicare had a rare disease, alongside some 20 million or more rare disease patients without Medicare coverage. But even with Medicare, these medications and treatments can still cost individuals thousands of dollars out of pocket each year.
Thomas Waldrop, a healthcare policy fellow with The Century Foundation, says going after the cost of rare disease drugs could have a meaningful impact on out-of-pocket costs.
“These more niche drugs for these rare diseases,” Waldrop said, “might have an outsized impact on disabled communities or chronically ill patients, who might have had disproportionately high health spending.”
Unfortunately for rare disease patients hard-pressed by medical bills, rare disease drugs are currently exempt from negotiations under the Inflation Reduction Act, partly thanks to arguments that the exemption encourages pharmaceutical companies to invest in relevant research.
Pass the Savings to Private Insurers
Nearly two-thirds of Americans under the age of 65 are on employer-sponsored health insurance, according to KFF. Given that the average annual premium is around $8,000 for such plans, people without Medicare’s protections can be hit with large prescription cost bills, especially at the beginning of the year. It doesn’t have to be this way.
“If these same prices were available to employer-sponsored insurers, there would be these even bigger savings,” Waldrop said.
One current roadblock, as a Center for American Progress report highlights, is that “individual employers have limited ability to negotiate lower prices for their insurance plans.” That’s where a governmental response may be more fruitful.
Tackle Overpriced Treatments for Chronic Illness
We know it’s possible for expensive drugs that treat chronic illnesses to be made cheaper. For example, more Americans can now get a month’s supply of insulin for $35, a significant reduction for a lifesaving treatment long marked by price gouging. But it can still be challenging for uninsured and underinsured people to secure affordable insulin, especially if they are insulin-dependent but don’t have Type I diabetes.
The federal government could fight—including through sustained public pressure—to get pharmaceutical companies to bring high prices for inexpensively made drugs in line with actual production costs. Those costs can pose a burden to chronically ill young people in particular, says Generation Patient CEO Sneha Dave, as they may have unstable health insurance for the first time in their lives.
Dave would look to “the impact that the Inflation Reduction Act can have on state drug pricing, for example, with prescription drug affordability boards that affect patients of all ages.”
Fight for Patent Reform
In July, the Affordable Prescriptions for Patients Act unanimously passed the Senate. The Act tries to clamp down on pharmaceutical companies’ practice of applying for (and receiving) multiple patents for nominally different uses or formulations of the same drug, which keeps cheaper generics off the market.
“Lowering drug prices requires comprehensive reform,” Dave says, including to the way medical patents are regulated, “to ensure affordability for the current and next generation of patients.”
Enacting the APPA, currently waiting to be heard in the House of Representatives, would be another move in the right direction.
On Thursday, the Biden administration announced that it had negotiated down the cost of the 10 most costly drugs covered by Medicare in a landmark deal. Once the reduced prices are enacted, in 2026, patients are expected to spend billions less out of pocket—as is the US government.
Meanwhile, Kamala Harris is speaking in North Carolina and elsewhere to push a new slate of economic policies, including aggressive action on price gouging, medical expenses, and the rising cost of living. What are the natural next steps for Democrats to build on the momentum of the White House’s Medicare deal?
They’ve got a lot of options. Even among generic drugs, prescriptions cost around three times as much in the US as they do in other countries. Americans across political parties also agree that the federal government negotiating drug costs down is a good thing, according to KFF and other polls.
There are at least four paths the government can take to keep cutting prescription drug costs that are likely to meet with similar public support—so people don’t have to forgo prescriptions they need.
Negotiate Rare Disease Drugs Under Medicare
Rare disease drugs—also known as orphan disease drugs–can cost a pretty penny. In 2019, nearly 7 million Americans on Medicare had a rare disease, alongside some 20 million or more rare disease patients without Medicare coverage. But even with Medicare, these medications and treatments can still cost individuals thousands of dollars out of pocket each year.
Thomas Waldrop, a healthcare policy fellow with The Century Foundation, says going after the cost of rare disease drugs could have a meaningful impact on out-of-pocket costs.
“These more niche drugs for these rare diseases,” Waldrop said, “might have an outsized impact on disabled communities or chronically ill patients, who might have had disproportionately high health spending.”
Unfortunately for rare disease patients hard-pressed by medical bills, rare disease drugs are currently exempt from negotiations under the Inflation Reduction Act, partly thanks to arguments that the exemption encourages pharmaceutical companies to invest in relevant research.
Pass the Savings to Private Insurers
Nearly two-thirds of Americans under the age of 65 are on employer-sponsored health insurance, according to KFF. Given that the average annual premium is around $8,000 for such plans, people without Medicare’s protections can be hit with large prescription cost bills, especially at the beginning of the year. It doesn’t have to be this way.
“If these same prices were available to employer-sponsored insurers, there would be these even bigger savings,” Waldrop said.
One current roadblock, as a Center for American Progress report highlights, is that “individual employers have limited ability to negotiate lower prices for their insurance plans.” That’s where a governmental response may be more fruitful.
Tackle Overpriced Treatments for Chronic Illness
We know it’s possible for expensive drugs that treat chronic illnesses to be made cheaper. For example, more Americans can now get a month’s supply of insulin for $35, a significant reduction for a lifesaving treatment long marked by price gouging. But it can still be challenging for uninsured and underinsured people to secure affordable insulin, especially if they are insulin-dependent but don’t have Type I diabetes.
The federal government could fight—including through sustained public pressure—to get pharmaceutical companies to bring high prices for inexpensively made drugs in line with actual production costs. Those costs can pose a burden to chronically ill young people in particular, says Generation Patient CEO Sneha Dave, as they may have unstable health insurance for the first time in their lives.
Dave would look to “the impact that the Inflation Reduction Act can have on state drug pricing, for example, with prescription drug affordability boards that affect patients of all ages.”
Fight for Patent Reform
In July, the Affordable Prescriptions for Patients Act unanimously passed the Senate. The Act tries to clamp down on pharmaceutical companies’ practice of applying for (and receiving) multiple patents for nominally different uses or formulations of the same drug, which keeps cheaper generics off the market.
“Lowering drug prices requires comprehensive reform,” Dave says, including to the way medical patents are regulated, “to ensure affordability for the current and next generation of patients.”
Enacting the APPA, currently waiting to be heard in the House of Representatives, would be another move in the right direction.
When a man with painful cystic acne came to dermatologist Eva Rawlings Parker for help in a Nashville clinic, she couldn’t prescribe him doxycycline or minocycline, two medications she’d typically use to treat this condition. This is because the man was a roofer, says Parker, and these medications would have impacted his ability to tolerate heat.
Parker’s patient was far from alone. Other common medications for physical health, like beta blockers, can impact people’s ability to handle heat. Many medications for mental health do, too.
Conventional wisdom tells people with conditions that make them unusually vulnerable to the sun, like the autoimmune disorder lupus, or are on medications that lead to heat sensitivity, to avoid staying outside when the sun is at its strongest.
“We know that workers have been dying because of chronic conditions that accumulate through heat stress over many years and decades that lead to shorter life spans.”
But for the one-third of US workers who must spend regular time outdoors, that advice bursts into flames. For some, such as farmworkers, hours and hours of heat exposure, with minimal or no reprieve, are just part of the job. Increasing heat waves and more frequent wildfires point to the need to find real solutions for outdoor workers—and highlight how labor and climate change are intertwined.
Alongside heat waves getting worse and longer, which can trigger mental health episodes, more and more people are taking antipsychotic medications or antidepressants like SSRIs. Even before the toll of the Covid pandemic, the CDC estimated that more than one in eight adults took antidepressants. Since the beginning of the Covid-19 pandemic, SSRI prescriptionsfor adolescents and young adults has increased by 63 percent.
Edward Flores, faculty director of the Community and Labor Center at the University of California, Merced, specializes in the conditions of low-wage and immigrant workers in California. He says the need for heat safety policy reform is acute. “We know that workers have been dying,” Flores says, “because of chronic conditions that accumulate through heat stress over many years and decades that lead to shorter life spans.”
Parker, the dermatologist, is acutely aware of how heat can trigger or worsen skin problems. She is co-chair of the American Academy of Dermatology’s group on climate change and environmental issues, and was an author of a 2023 review on the ways climate change can contribute to dermatological issues, including triggering flares of conditions like hidradenitis suppurativa—which causes painful lumps deep in a person’s skin—and skin cancer.
“The skin is really probably our most climate-sensitive organ, also a very large and complex organ, and it’s really the major interface to the environment,” says Parker, who is also a Vanderbilt University Medical Center professor. Her experience with patients, many of whom are low-income and migrant workers, lets her see firsthand just how challenging giving practical health advice can be in a warming world.
People’s core temperature can rise much more quickly on SSRIs, for instance, putting them at increased risk of heat stroke. And there’s the challenge, says Rupa Basu, a heat epidemiologist with the California Office of Environmental Health Hazard Assessment: “It’s really hard to monitor core body temperature.”
Workers do havesome legal rights to breaks and water, depending on the locale. California, Oregon, and Washington are the only states that mandate those breaks. And roughly half of crop farmworkers have no legal work authorization. That lack of legal status, and the threat of deportation, gives many workers reason to fear complaining about working conditions.
In July, the Occupational Safety and Health Administration proposed a new set of rules which would help protect more than 36 million workers from heat-related illness or death. The proposed OSHA rules would require employers to monitor their workers for heat exhaustion symptoms, provide adequate water and shade, designate break areas, and provide mandatory rest breaks, among other things.
In one landmark 2022 farmworker health study that Flores, of the University of California, worked on, nearly half of workers interviewed said their employer had no heat-illness prevention plan—such plans are required by state law, and may soon be required federally—and one in six did not receive state-mandated rest breaks. When that lack of respite causes illness, many farmworkers are unlikely to see a doctor: 23 percent of those interviewed had not had a doctor’s visit in the past year, even at clinics tailored towards migrants.
23 percent of those interviewed had not had a doctor’s visit in the past year, even at clinics tailored towards migrants.
But enforcement, if the rules are implemented, will be a challenge. For one thing, as Flores explained, California has very few Spanish-speaking OSHA inspectors—and none that he’s aware of in the Central Valley, which supplies 8 percent of America’s total agricultural output. (89 percent of California agricultural workers speak Spanish as their primary language.) Nationwide, many accounts exist of inspectors arriving at a workplace without being able to speak workers’ main language.
Summers, meanwhile, are only going to get hotter. Without adequate regulation and enforcement, workers will keep dying in the heat. As Bill Field, director of AgrAbility, a Department of Agriculture program for disabled farmers, put it: “If you go to the racetrack, all the horses have multiple fans blowing on them…Why? Because we care more about the horses than we do the people.”
The adversity brought on by the climate crisis, Flores said, makes it “all the more important to safeguard workers’, outdoor workers’, health and well-being with improved standards and enforcement.”
Whether or not it is legally required, there are steps that employers can already take—but seldom do—to make outdoor working environments safer. “It could be things like increasing water breaks,” Basu said, “or putting up structures to increase shade.”
When the sun beats down on workers, clothes that protect against ultraviolet lightcan be a useful tool. Research suggests that UV-protective clothing is more effective in preventing skin damage, blocking 96 to 98 percent of the sun’s radiation—by comparison, a cotton shirt will only block around 80 percent. But these garments also tend to be more expensive—protective long-sleeve shirts can easily cost $50 or more. Field believes that employers should cover the cost of UV-protective clothing for exposed workers.
“If I’m a legitimate apple grower or a peach grower in New Jersey, and I’ve got to hire people,” Field said, “I need to be able to budget for them to all have hats and water bottles and things that are going to protect them while they’re in the field.”
Those changes wouldn’t just benefit workers who are chronically ill—prolonged heat can disable and kill anyone. “When we’re thinking about public health messaging,” Basu adds, “it’s so important to say it’s not just people who you would think would be at high risk.”
In late April, New York Democratic Gov. Kathy Hochul and state lawmakers finalized a $233 billion budget for the next fiscal year. One item in its 144-page official summary has sparked fear among disability advocates: dramatic changes to a vital home health aid program that may push more people into nursing homes.
A quarter of a million New Yorkers currently use CDPAP, a widely popular program launched in 1995, which facilitates Medicaid funding for home carers chosen by patients themselves at hours they arrange. Participants spoke to Mother Jones about how the program allows them to remain in their communities, rather than being institutionalized—a cause central to disability rights activism. Without access to workers who understand their needs, like assisting people with spinal cord injuries with toileting, those participants risk hospitalization, placement in restrictive long-term care, or both.
The program is run through “fiscal intermediaries,” which provide financial and administrative oversight; some specialize in helping certain groups, such as the Bengali immigrant community. Hochul’s plan would make the program an administrative monopoly: by October, one middleman—potentially an out-of-state, for-profit firm—will hold a $40 billion contract covering all 250,000 participants in the state. Currently, those intermediaries are subject to oversight by New York’s chief fiscal officer; under Hochul’s system, the new middleman wouldn’t be. In late July, some current intermediaries sued New York’s Department of Health over the changes.
Hochul has been incredibly critical of CDPAP, calling it a “racket.”
“This was a backroom deal that happened days before the budget was finalized,” said Kendra Scalia, a disabled public policy analyst and board president of the Consumer Directed Personal Assistance Association of New York State, which supports both CDPAP providers and recipients. “It was never discussed with disabled communities.”
Hochul has been incredibly critical of CDPAP, calling it a “racket” and “one of the most abused programs in the entire history of the state of New York.” But 2022 audits by the state’s Medicaid Inspector General reviewed $37 million in claims—and found that 99 percent were accurate. Of $46,000 in documented overpayments, $41,000 was recollected. Hochul’s office did not respond to a request for evidence that the program has been abused.
People protesting against changes to CDPAP in New York City.Laura Cardwell/CDPAANYS
It can already be difficult to get care through CDPAP. For Laura Mauldin, a graduate student when she applied in 2010, it took nine months—and an initial rejection—to get her partner, who had been sick with cancer for four years, approved for support.
“There was not an option to check for CDPAP” in home care applications at the time, said Mauldin. The request for around-the-clock care was eventually approved—allowing Mauldin to leave her apartment, with her partner in a worker’s care—but so late that Mauldin’s partner was only able to use it for three months before passing away.
Critics like Hochul see the potential for corruption in the fact that disabled people can hire family members—something Kendra Scalia first did by hiring her sister when she was in college.
“I felt really vulnerable to hiring strangers or welcoming strangers into my dorm room where there’s no oversight,” Scalia said. Her brother now has worked as her assistant for the past decade.
Some care workers feel they’ve been left in limbo on how Hochul’s changes will impact them. For the past 25 years, Tara Murphy has worked as a home care provider through CDPAP, after working as a certified nursing assistant in a nursing home. As a home carer, Murphy felt she’d be able to serve people better.
“I saw all the horrendous things and lack of care and neglect that were happening,” said Murphy, who is based in Troy, New York. “I knew I couldn’t change it, and I didn’t want to be part of the medical mafia.”
Now, Murphy is panicked over the impending changes to the program that helps employ her. She doesn’t know whether she’d be hired under the new monopoly, or whether her pay will be cut. “I’m sitting here every day,” Murphy said, “like, ‘Am I going to have a place to live? Am I going to be able to eat?’
1199SEIU, New York’s main health care workers’ union, has been critical of for-profits’ growing role in the program. Helen Schaub, the union’s interim political director, said that administrative costs have ballooned since a 2012 jump in the number of for-profit intermediaries. One of New York’s largest home care intermediaries, Schaub points out, is being run by embattled insurance giant Anthem.
Some users of the program who spoke with Mother Jones also expressed concerns that pay cuts could force their aides to look elsewhere for work, leaving both patients and workers in a difficult position.
Lacey Tompkins, who works in advertising in New York City, says that CDPAP makes it possible for her to maintain a partly remote job as a disabled worker, with help getting to work despite hours that can change from week to week. “I can make my decisions and not [have] a standard set of hours,” Tompkins said.
Advocates with differing views agree on one thing: Hochul’s six-month timeline to transform the program is unreasonable and impractical. “Any serious company who is bidding on the work also believes that, because it’s a very daunting task,” said Schaub, of SEIU. “Privately, people in the [Hochul] administration have said, ‘We know that it can’t happen on that scale.’”
Update, August 13: This article has been updated to detailthe current and proposed roles of the New York State Comptrollerin reviewing the state’s CDPAP program.
There are more than 400,000 people with Long Covid in Minnesota—the home state of Democratic vice presidential nominee Gov. Tim Walz—according to the state’s health department. A post-viral illness with serious impacts to quality of life and ability to work, Long Covid is also a workers’ rights issue: not being able to rest during and after a Covid infection makes people more likely to develop it.
ME/CFS and POTS are not new conditions, but patients with both have long experienced their symptoms being dismissed by physicians. A 2016 study estimates that around one in four people with ME/CFS are largely confined to bed by their symptoms.
In May '23, MN became the first state in the US to pass dedicated funding for Long COVID & related conditions (ME & POTS), w/Gov. Walz instrumental in this legislation
Now, with Walz a prospective Vice President, Long Covid and related conditions may have a more highly placed advocate than ever before—with a demonstrated record of working to combat this post-infectious disease. Hanlon says a federal response “should include increased baseline funding to the NIH and federal health agencies to support the expedition of clinical interventions.”
“As Vice President, we hope and urge Gov. Walz to continue to prioritize this crisis that is impacting over 20 million Americans and only growing,” Hanlon told Mother Jones. “It will take our highest levels of leadership at the federal level to respond with the urgency that this crisis demands.”
Walz is not the only pro-labor politician pushing for more funding to address Long Covid: just last week, Vermont Sen. Bernie Sanders introduced a bill that would allocate $1 billion annually across a decade for Long Covid–related research.
Currently, the only way to completely avoid Long Covid is to not get Covid-19, which reinforces the importance of mask-wearing and adequate air filtration. But with more research funding, doctors may be able to develop a better understanding of how to manage Long Covid symptoms—which can include post-exertion malaise, heart palpitations and hives—more quickly. “Just as COVID-19 is not going away,” Walz wrote in his 2023 funding proposal, “Long COVID is not going away.”
In 2020, Sharon Giovinazzo, who is blind as a complication of multiple sclerosis, wanted to vote independently—and in person. She knew that electronic voting machines in Little Rock, Arkansas, then her home, were her only option.
Giovinazzo called an Uber to take her and her guide dog to the polls. The first three canceled on her. Giovinazzo, now CEO of LightHouse for the Blind and Visually Impaired in San Francisco, knew that was a possibility.
“You lose that autonomy of just being able to go where you want, when you want,” Giovinazzo said, “and do what you want.” (As an unfortunate bonus, the accessible voting machine at her polling place wasn’t working—someone had to help cast her ballot despite her efforts.)
“You lose that autonomy of just being able to go where you want, when you want,” when you’re discriminated against.
As more and more states clamp down on mail-in voting—in Texas, for instance, where it’s difficult to vote by mail, ballots can be rejected if a poll worker thinks their signature doesn’t match one on file—there a greater urgency to make it physically practical to get to voting booths, even among people comfortable with absentee voting. In addition, a joint survey by the US Election Assistance Commission and Rutgers University following the 2022 midterms found that nearly half of disabled voters prefer voting in person.
Scheduling paratransit to the polls is one option—but in rural areas, that can also be more challenging than it should, says Michelle Bishop, manager of voter access at the National Disability Rights Network.
“Even if you can get a pickup to take you to your polling place, you have no idea when you’re going to need a ride home,” Bishop said. “That’s something that you would have had to have scheduled well in advance.”
RideShare2Vote was founded by Sarah Kovich and her daughter Paola in 2018 in Texas to help Democrats and left-leaning independents vote. In addition to utilizing regular cars, RideShare2Vote rents out accessible vans to take voters to the polls free of charge, including in rural areas. Drivers also receive training to understand voting rights. “Every voter that a [Rideshare2Vote] driver has ever taken has been able to cast a ballot with us,” Kovich said. “No one’s been turned away.”
The organization operates in more than a dozen states—mostly Republican strongholds and swing states. But, again, those plans need to be etched out before voting day—and its budget only lets it take some 12,500 voters to the polls in a given election year.
In an ideal world, rideshare apps like Lyft and Uber could be a great alternative for people without ready access to paratransit. But the issue remains that drivers cancel on riders (which has been the subject of court settlements), and accessible vehicles are not readily available. One wheelchair user seeking to vote in person also shared a video with Mother Jones of a driver refusing them a ride because of their wheelchair. A 2018 report from New York Lawyers for the Public Interest found that, when requested, barely half of New York City riders received accessible vehicles from Uber—and below five percent for Lyft.
Training drivers not to discriminate against disabled people, and having accessible vehicles available, should be universal to rideshare firms. But it isn’t.
In statements to Mother Jones, both Uber and Lyft said they didn’t tolerate discrimination, and that they encourage disabled riders who have experienced it to submit reports. But it happens too often to report every time, and disabled people often face stigma for filing complaints, especially ones under the Americans with Disabilities Act.
Other organizations have also partnered with ride-share companies to get people to the polls: this year, NAACP is partnering with Lyft to do just that for Black voters, who often face disenfranchisement. Asked how NAACP would work with Lyft to make sure Black disabled voters weren’t turned away, its national mobilization director, Tyler Sterling, said in a statement that the organization is “working closely […] to ensure their drivers are equipped with the necessary cultural competency” to help all Black voters looking to participate.
The expense of transportation means there’s no simple, perfect solution to help disabled people vote, said Bishop, of the National Disability Rights Network. Bishop says that makes it crucial to fight for a voting system “where we have just a whole menu of options for voters, and they can figure out what makes it work for them”—a challenge not only due to expenses, but both ableism and rising voter suppression.
Fred Trump III, Donald Trump’s nephew, very much hopes for a bipartisan national effort to better support the needs of disabled people, a passion driven by being the father of a disabled son. That’s why he tried—when his uncle was president of the United States—to use his family ties to push for disability rights.
Fred did manage tohave a White House meeting with disability advocates that his uncle Donald attended. Later on, he was met with comments by Donald that Fred “should just let” his son, Donald Trump’s grandnephew, “die”—an anecdote he recounts in a new book, All in the Family: The Trumps and How We Got This Way.
The former president, Fred Trump says, has never met his grandnephew William. In fact, he’s never even tried to. Donald isn’t the only Trump family member to share that attitude, according to Fred—who, perhaps unsurprisingly, doesn’t think “anything positive happened” for disability rights under Trump’s administration.
"Those people should just die." That's how Donald Trump talks about disabled Americans, according to his nephew, Fred Trump.
Fred Trump’s disability rights goals, including more accessible, better medical options—especially training doctors to treat nonspeaking people like his son—didn’t see progress under the Trump administration. Under a potential Kamala Harris administration, the younger Trump hopes they might.
Fred Trump III talked to Mother Jones about his advocacy work, the way Donald Trump treated his son, and why he supports Kamala Harris’ run for office. He’ll be “campaigning for her if I’m asked,” Trump says, “because I know she will be a champion of the disabled community.”
Before your uncle made his comments about your son, and people like him, how did he treat William?
Donald has never asked, and not once has ever met William, who is 25 years old now. Never. He has asked from time to time, “How’s William? How are the kids?”—I have two other adult kids—but never, “Hey, you know, can I meet him?” Frankly, he’s missed out on the ability to know William, who I consider the most courageous and inspirational person I have ever met.
Is that typical of other people in your family as well, or is that just a decision Donald made?
Neither my two aunts nor my other uncle, Robert, ever asked to meet William. William was in Mount Sinai [Hospital] in the neonatal intensive care unit for three weeks, within a mile radius of where they all lived, and they never visited William. In fact, they never called about William to see how he was doing while we were there.
Fred, his son William, and a golden retriever.Courtesy Fred Trump III
You met with people in the White House to advocate for better transitions from pediatric to adult care and more. How did that meeting come about?
When Donald was inaugurated, I knew that would be an opportunity for me and my wife, Lisa, to try to use his position as president to the benefit of folks with intellectual and developmental disabilities. The first person we reached out to is my cousin Ivanka, who had, as you know, a role within the administration. She was great, and set us up with Ben Carson, who was the Secretary of Housing and Urban Development, because, as you may know, housing issues for disabled [people] is a very tough issue.
“All those expenses—those people should just die.”
It culminated in a meeting with just brilliant people who have dedicated their lives to issues regarding the complex disability community in May 2020, [when Covid] was raging. Just to let Donald know, I had called him and said, “Look, I really need you to listen to this. Okay?” He did, and we spent 45 minutes [in the meeting]. It dispersed, he called me back in, we chatted for a minute, and he goes, “Those people, all those expenses—those people should just die.”
In the greater context, in our country, people may not have that extreme reaction—but the disabled community gets short shrift in this country, and I don’t think people understand that. One of the most important things is squaring away how to take care of caregivers, funding for better caregivers so they can live their lives, [and] also better training. I’m going through this in my town right now, where people are fending off just using money that was given for ADA work to widen door frames and such. A lot of people don’t understand it unless it hits them personally.
Was there anything that you heard after the meeting, besides what your uncle had said, where staffers made any effort to listen to you?
No, I don’t think anything positive happened within the administration, which is partially why—there are many reasons why—I’ll be voting for Kamala Harris, and campaigning for her if I’m asked, because I know she will be a champion of the disabled community.
You mentioned that Ivanka set up this meeting with you. I’m curious what your cousins’ role have been in your son’s life.
Eric and Donnie were the only family members to ever meet William. We invited them up to our house, Lisa and I did, separately. Donnie showed up with Vanessa, and I believe with his first two kids. Eric was with Lara before they were married. They both came, we spent time together, and it was nice.
They understood. They could see William for who William was, who, again, is a wonderful young man. I will give them absolute credit. They have their own charities that they’re involved with, and that’s fantastic. I know Eric was very much involved with St. Jude [Children’s Research Hospital], and I give him kudos for that. Ivanka has her life, [and] she was helpful in other ways.
“I don’t think anything positive happened within the administration [on disability].”
Do you have concerns about how your uncle would represent disabled Americans in a second term based on how he’s treated your son?
Let me answer it this way. [Tonight], there’s a Zoom call from the Harris campaign called Disabled Voters for Harris. Imagine a Disabled Voters for Trump. I don’t think he or his campaign would care about doing that.
The attitudes of some people in this country toward the disabled is very disturbing—[like] when Donald mocked the New York Times reporter Serge Kovaleski. That was bad enough, but the fact that the crowd cheered him on was disgusting.
Given the opportunity, would you meet with Vice President Harris before the election—or if she wins, after—about how the White House could better support people with complex health needs?
It would be my honor to do so. This is not an ego thing, [but] I am going to have a national platform with this book coming out, and I’m going to use that to the best of my ability to advocate on behalf of people with intellectual and developmental disabilities.
Is there anything that you would like to say to your uncle about how he views your son, and how he views disabled people in general?
It’s not just disabled [people] that he demeans. It’s people that he thinks are lesser than him. If you have that power that he had, and he thinks he has, why not do stuff for the greater good? I know it’s a trite expression, but isn’t it just easier to try to help people instead of helping yourself?
This interview has been edited for length and clarity.
If not for her partner driving her, Madeline Ryan Smith isn’t sure how she’d be able to campaign across the four counties she hopes to represent in Georgia’sstate House. Smith is blind: “Getting from Point A to Point B physically” is the biggest hurdle she faces on the campaign trail.
“I think it is problematic and kind of disheartening that disabled candidates have to rely so heavily on able-bodied people around them,” Smith said. “We talk a lot of big game about public transportation, and then we choose not to implement it anywhere except for metropolitan cities.”
Smith, 27 years old, is the Democratic nominee for her district; the Republican incumbent she’s running against (himself a Democrat until the mid-aughts) has been in office since 1985, before she was born. Her experience living with a disability has influenced her policy views, including support for expanding Medicaid and getting rid of Georgia’s subminimum wage for disabled workers.
Many candidates claim to support disabled people; Smith wants them to “prove it.”
Although disabled people make up the largest minority group in the country, there are disproportionately few openly disabled politicians relative to the approximately 42.5 million American adults with disabilities. There are several reasons: disabled people can lose Social Security benefits while running for office; some politicians—like FDR throughout his 12 years in the White House—hide their disabilities due to ableism; for people with some health conditions, the long hours aren’t feasible.
In January 2023, Smith was elected as Georgia Democratic Party’s Disability Caucus Chair, where she’s already been met with disappointment by the state Democratic Party’s decision to leave disability policy out of its platform this year.
Politicians, Smith says, need to start proving that they actually care about disabled constituents. “When anyone inside the Democratic Party who’s running for office comes to me and says, ‘Oh yeah, I’m so supportive of people with disabilities,’” she notes, “I say, ‘Okay, prove it.’” Many of those candidates, Smith says, don’t provide standard accommodations like alternative text on social media posts for people with low vision—including her—or American Sign Language interpreters at events.
Smith says they need to take the initiative. “It’s in the ADA, so I don’t need to be teaching anyone how to do that,” Smith says. The Americans with Disabilities Act—which many disabled people still have to fight to get institutions (and the people who run them) to follow—was signed into law in 1990, again before Smith was even born.
At political events not run by disabled people, Smith has “never seen anyone stand up to make a speech and describe themselves visually”—the type of visual description that Republicans attacked Vice President Kamala Harris for using in a meeting with disability activists.
“The reason people are making fun of Kamala Harris as she accommodates the audience she is speaking to is twofold: ignorance and ableism,” Smith adds. “There’s no other explanation.”
Constantly facing inaccessibility has led Smith to make her campaign as accessible as possible both to the people working on it and to her constituents.
“Events are accessible. They’re safe. They’re masked. We have hand sanitizer,” she says. “ We do the whole nine yards because…a lot of my campaign staff is disabled anyway.” Smith says it’s a priority for her team to “proactively think about accessibility” rather than as an afterthought.
And she hopes that seeing more disabled people run for office—through campaigns like hers—will have a positive impact on other people with disabilities and inspire them to do the same. “It is so important, so vitally important,” Smith said, for disabled youth to “see people with disabilities in positions of power.”
When his uncle Donald became president, Fred Trump III—whose son William, due to a rare genetic mutation, has seizures and an intellectual disability—saw an opportunity to advocate for disability rights.
In a Time excerpt of his forthcoming book All in the Family, Fred Trump revealed a disturbing conversation with the then-president following a White House meeting in which he discussed how expensive caring for people with complex disabilities can be. Donald Trump said of some disabled people, his nephew recounted, “The shape they’re in, all the expenses, maybe those kinds of people should just die.”
Time said that it had reached out to Donald Trump for comment about his nephew’s allegations but received no response.
It wasn’t the only concerning conversation Trump’s nephew alleged that they had. When a Trump family medical fund for William’s medical and living expenses was running low, Fred said his uncle told him, “He doesn’t recognize you. Maybe you should just let him die and move down to Florida.”
“The shape they’re in, all the expenses, maybe those kinds of people should just die.”
It wouldn’t be the first time Donald Trump has made offensive comments about disabled people. He infamously made fun of a reporter’s disability at a 2015 rally. But it’s still even more shocking to hear from a close relative that he clearly does not value the life of his own disabled family member.
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