What We Can Learn From California’s New HIV Law

California HIV advocates scored a win this past October, when lawmakers voted to reform several criminal statutes that specifically targeted people living with HIV. The new law, S.B. 239, reduces the penalty for not disclosing HIV-positive status prior to sexual activity from a felony charge punishable by up to eight years of imprisonment to a misdemeanor carrying a potential punishment of up to six months in county jail. The law also repealed a felony that was specific to sex workers living with HIV.

The new provisions, which took effect January 1, now require an actual transmission or for prosecutors to demonstrate that a defendant had intent to transmit HIV. They also recognize that certain risk reduction measures—such as being on antiretroviral treatment or the use of barriers like condoms—negate intent.

California’s new reforms have been hailed as an exemplar for advocates working to modernize laws in other U.S. states. As of 2011, there were 67 laws in 33 states focused on people living with HIV—many of which were drafted in the earliest days of the epidemic when no effective treatments existed. Most of the laws make it a felony to engage in sexual contact without disclosing your status, and some turn criminal misdemeanors like biting or spitting into felony aggravated assault or attempted murder, despite the universally accepted fact that saliva does not transmit HIV.

State Sen. Scott Wiener (D), who co-authored the bill, believes that the old laws “focus on the exceedingly rare situation where a sociopath runs around and intentionally tries to infect people.” He added, “That’s not who’s being prosecuted under these laws. Who’s being prosecuted? An awful lot of women, particularly African American women and transgender women.”

Recent research from UCLA’s Williams Institute found that 43 percent of the people arrested, charged, or prosecuted under HIV-specific laws were women, even though women only make up 13 percent of the state population of people living with HIV. They also found that felony solicitation enforcement was likely to disproportionately impact LGBTQ youth and transgender women of color, and that white men were statistically less likely to have similar charges brought against them.

“Most of this stemmed from the solicitation part of the law,” said Amira Hasenbush, the Jim Kepner Law and Policy Fellow at the Williams Institute. The first of California’s HIV criminal laws required mandatory HIV testing for individuals convicted of solicitation, and repeat arrests for those already registered as HIV-positive faced felony sentence enhancements. She added that street-based solicitation arrests in California had gone down over the last 15 years with the advent of the internet. But sex workers who rely on public spaces—overwhelmingly black women—now bear a higher burden of arrests.

‘Folks really do think that the laws require transmission’

Many state HIV-specific laws that criminalize non-disclosure do so without requiring actual transmission to take place. Many also do not require prosecutors to prove that the defendant had a malicious intent to transmit; what lawyers call a “culpable mental state.”

“Something that I encounter all the time, even among advocates, is that folks really do think that the laws require transmission,” said Kate Boulton, staff attorney for the Center for HIV Law and Policy. “They are surprised to discover that in fact, no harm needs to occur, and that there doesn’t even need to be a risk of harm,” she said. And risk of harm is growing increasingly rare: people living with HIV who have an undetectable viral load and receive antiretroviral treatment cannot transmit the disease to sexual partners.

The new California law takes this into account. “If you are on treatment, or if you used a condom, those are things that would negate the required intent to transmit,” said Boulton.

Still, advocates disagree on how to move forward.

“It’s very exciting what came from S.B. 239, because you see success is possible,” said Boulton. “But it’s not without its drawbacks,” she added, cautioning the use of viral load suppression as the basis for deciding a defendant’s intent.

“It’s important for advocates to be mindful of potential negative consequences if these laws are modified to criminalize only people with HIV who have detectable viral loads, even when there is no transmission or intent to harm,” says Bruce Richman of the Prevention Access Campaign. Legislation that places a premium on having an undetectable viral load would leave many HIV-positive people—particularly those experiencing a lapse in treatment or those whose HIV becomes resistant to treatment—subject to the same punishments that are currently in place. So for now, legal scholars, public health professionals, and HIV advocates are still struggling to find the balance between using viral suppression as an approach to defining risk reduction and negating intent, without tipping the legal scales against those who have less access to HIV care.

In the long term, advocates are hopeful that reforming these laws, educating lawmakers, and working to increase access to HIV prevention and care will improve legal and health outcomes in low-income and marginalized communities. Otherwise, added Boulton, “It’s just punishing and incarcerating people strictly on the basis of health status.”

Correction: This article has been updated to amend inaccuracies regarding S.B. 239, and to include the latest research from the Williams Institute.



Why We Need to Stop Calling Trump ‘Crazy’ When We Really Mean ‘Dangerous’

Questions about President Donald Trump hit a fever pitch this week following his tweets about the size and potency of his nuclear button. Of course, such questions are nothing new. Throughout the campaign and Trump’s first year in office, news articles, op-eds, and tweets critical of him have routinely deployed words such as “crazy,” “insane,” and “unstable” as epithets. But what are the implications of the use of mental health language in such critiques for how our society views mental illness?

I sat down with Rebecca Cokley, a senior fellow for disability policy at the Center for American Progress, to discuss this.

Rebecca Vallas: So I’ve had conversations with a lot of folks who say “Why does it matter? People can use all kinds of language but isn’t this just about people being a little too PC?”

Rebecca Cokley: I’m going to read a quote from Leslie Templeton from the Women’s March Disability Caucus. She just posted a series of snapshots of news clips talking about the mental status of Trump. She said, “When you read stuff like this, having said issue yourself, it makes you feel small. It makes you feel inferior, it makes you feel weak. Not only do I feel like my rights are being attacked by Trump, I feel who I am is being attacked by the American people.”

These are people’s lives. The accusation of someone’s unfitness to serve in any sort of role—whether as a parent, a colleague, a boss, an educator—is impacted by the slightest accusation, especially around mental health. It’s not about someone being PC or not, it’s really about a lack of understanding of the impact of labeling someone without irrefutable proof.

RV: So there’s a connection being made between his negative behaviors and his unpopular policies that people are explaining by this labeling. You’re saying that by extension people who themselves have mental health disabilities, mental illness, intellectual disabilities, and so forth are being implicated in these negative behaviors.

RC: Definitely. I also think one of the challenges with all these armchair diagnostics is that the people that are doing it aren’t even clear on what a mental health disability is. We sit there and see articles titled like, “Can someone with the attention of a kitten on crack make a decision?”, “Trump has social autism,” “Trump has a dangerous disability.” People still like to think about the other, the unknown, the shadow in the corner of the room, the thing we don’t talk about, versus acknowledging that it’s your son seeking therapy, it’s your best friend who is grieving the loss of their mother, it’s your boss who is now taking anti-anxiety meds. It’s much easier to castigate those folks than to say, “No, these are real people, and in some cases even me.”

‘We can conclude that the president is unfit to serve without armchair diagnosis’

RV: There’s a particular significance of this conversation having to do with the presidency or really with any elected office. It’s basically gospel that people with mental illness or mental health disabilities are unfit to serve. If someone has ever sought treatment—whether for depression or for substance misuse—even just that can stop someone from being taken seriously as a potential candidate. So in reinforcing this kind of narrative around what mental illness is and tacking it onto Trump’s face, there is a much deeper consequence that a lot of people aren’t thinking about that has to do with maintaining the status quo or even taking us backwards in terms of representation by people with disabilities in elected office.

RC: Definitely. When we’re talking about people with disabilities writ large we’re talking about 54 to 58 million people. If you’re zooming in specifically on people with mental health disabilities or mental illness, we’re talking about 10 million people in this country. And I think as we’re talking about Trump, it really is much easier to point at “mental fitness” than to actively talk about behaviors. That’s uncomfortable, because it forces us to be specific: What are the behaviors that we’ve seen? What are the behaviors that are evident in this person’s history that we should be pointing at to say “we screwed up here.” We dropped the ball, we elected somebody who was unfit to become president of the United States.

Besides, we have a history in this country of electing people with disabilities. Right now we can look at Sen. Tammy Duckworth (D-IL) and Rep. Jim Langevin (D-RI) as people with physical disabilities that are currently serving in government.

RV: Your examples point out that people would not be looking at Trump and saying “man, his disability makes him unfit to serve” if it were a physical disability—that’s something that people at their core would understand would be deeply offensive. But if it’s a mental illness, all of a sudden that seems to be equivalent to unfitness to serve.

That brings us to something you often talk about, what you refer to as “a hierarchy of disability.” And what this means in the policy context, for example, is that it has been a lot easier to get health coverage if you’re a person who has a physical illness or a physical disability than it is to get mental health coverage. But that conversation is rare when it’s about social perceptions and stigma. I think what we’re seeing here is this massive gap between the trust that a lot of people in this country have for the potential leadership or decision-making by people without disabilities or people with physical disabilities, compared with people who have mental health disabilities or mental illness or intellectual disabilities and so forth. Am I right to characterize it that way?

RC: I think you’re definitely right. I’ll even use myself as an example, being a little person. I walk in the room and you can tell that I’m a little person. Nobody is going to object to me asking for a stool or jumping on the chair to push the chair down. But for a long time I wasn’t as out about having obsessive compulsive disorder and it wasn’t something I frequently talked about until I was in my 20s. I was actually challenged by a friend and mentor of mine, Andy Imparato, who is very outspoken about having a mental health disability. When Andy and I were on a four-hour car ride from Washington, D.C. to Newport News for the Virginia Youth Leadership Forum, there were two topics of conversation: One, why haven’t I proposed to my then-boyfriend, now husband and two, why don’t I talk about having OCD?

We had a conversation about why I was hesitant to talk about it, and why I had put myself out as an advocate, as a spokesperson, as somebody working in the disability space, but I was not coming to the table with my whole self there. And so I tried it that night. I addressed the fact that I walk in the room as a little person and that’s a privilege. And I often don’t think we talk about disability as privilege. There is a privilege to my existence as a person with a physical disability. There’s a privilege to the fact that unlike 80% of disabled people, I grew up in a family just like me.

And then I addressed the fact that I also have Obsessive Compulsive Disorder and I used to wash my hands like 200 times a day. The number of young women who came up to me afterward was amazing. It was about 50 young women that pulled me aside that all wanted to talk about mental health disabilities. The fact that I had a job, the fact that I was in a relationship, the fact that I was being paid to go around the country and talk to other young people with disabilities, and the fact that I was working on a presidential campaign at the time were huge.

So I think a lot of times when we have internally stigmatized our own mental health disabilities and then we face a public that criminalizes mental health, without any criminal behaviors associated with it. We do it for no more reason other than to say that you don’t like somebody, for no more reason than to say that somebody is evil or you don’t agree with their decisions. It invalidates a part of their humanity, and makes it that much harder for folks to come out.

RV: I want to get to the solutions part—how we do better. You talked about the importance of precision in language. What’s your advice to those folks who are out there wanting to be good allies on this?

‘It invalidates a part of their humanity, and makes it that much harder for folks to come out.’

RC: I think checking in on your friends that have mental health disabilities and saying, “Hey, how is it going? Do you need anything? How are you feeling in this time?” And doing some real deep listening as to what people are encountering, because it’s hard right now. I think also connecting to organizations that work with folks with mental health disabilities, whether it be groups like Dan Fisher’s Psych Survivors Network or certain chapters of the National Alliance on Mental Illness that are doing some really good things. Engage to see what needs to be said, what is the right language to use, and ask your friends. So much of our language gets caught up on the fear of saying the wrong thing versus taking five seconds and asking your friends what’s the right thing to say.

I also think, as long as we continue to hold mental health at arms length as “the other,” we can’t have the conversation that we really need to be having. That leads to the criminalization of mental health and the knee-jerk reaction of saying, “Oh, that person can’t do that job because they’re nuts.”

RV: I want to read a tweet by Julia Bascom, Executive Director of the Autistic Self Advocacy Network. She says, “We can conclude that the president is unfit to serve without armchair diagnosis or violations of medical ethics. We can resist racism, totalitarianism, and a nuclear threat without ableism. We don’t need this, we can do better, progressives have a moral obligation to do better.” Powerful words. But it feels to me that that piece of call-to-action language doesn’t quite go as far as some people are wanting to go, especially given the conversations about invoking the 25th Amendment. So I would love to hear any suggestions you have about how people can handle these kinds of hard and honest conversations when folks are looking for guidance about how they can actually engage in this conversation but in a way that is not ableist.

RC: I think going back to the last line of Julia’s tweet, progressives have a moral obligation to do better. We are the party that came up with mental health parity in health care, thanks to former Senator Paul Wellstone. We are the party that is pushing for the U.N. Convention on the Rights of Persons with Disabilities. We are the party that is pushing to end sub-minimum wage programs for people with disabilities. We are the party that is pushing to increase access to mental health services on college campuses and programs for young people with mental health disabilities. Why are we then at the same time being so quick to use disability diagnosis as a weapon? Because we don’t like the president and we think the president is acting like a jackass. If President Obama wasn’t afraid to say Kanye was a jackass, why can’t we say that President Trump is being a jackass?

This interview was conducted for Off-Kilter and aired as part of a complete episode on January 6. It was edited for length and clarity.



How Abusers Trap Victims By Draining Their Finances

On November 2, 2012, Kate Ranta’s husband, Thomas Maffei, came over to her Coral Springs, Florida apartment unannounced while her father was visiting. When she saw him, Ranta and her father shut the door. Maffei, a retired Air Force officer, pulled out a gun and fired shots through the door. He made his way into the apartment and shot Ranta and her father. One bullet hit her hand and the other went through her left breast, barely missing her heart. Her 4-year-old son witnessed it all. Thankfully, Ranta and her father survived.

Two years prior to the shooting, Ranta tried leaving Maffei. When Maffei picked a fight and tried to leave with their then 2-year-old son, she demanded that he hand over her child. Then, he raised his fist and threatened to punch her. That was the moment she started to realize that his mean streak was not harmless—he had never been physically violent before. Ranta called 911, but Maffei was calm when the officers arrived.

“I’m running up looking like the ‘hysterical wife who loves drama,’ but in reality,  I was highly traumatized,” Ranta recalls.

While the other cops spoke to Maffei, one officer took her back in the house to warn her, saying: “If he didn’t hit you this time, he’ll hit you next time. Go get a restraining order against him tomorrow.”

Ranta took the officer’s advice. But it took two years, multiple visits to the courthouse, and a near-death attack before Ranta was granted a permanent order of protection.

Ranta’s experience is not uncommon. According to the National Coalition Against Domestic Violence, 1 in 3 women in the United States have been abused by an intimate partner. And according to Sarah Gonzalez Bocinski, director of the Economic Security for Survivors Project at the Institute for Women’s Policy Research, one of the main reasons survivors don’t leave is because their partners use sinister tactics to trap them into staying.

1 in 3 women in the United States have been abused by an intimate partner.

For 99 percent of domestic violence victims, that includes financial abuse that can leave victims facing economic insecurity and poor credit. Financial abuse is insidious—it gradually takes away a survivor’s agency by controlling their money, hindering their ability to keep a job, and withholding necessities like food and medicine. Despite its prevalence, 78 percent of Americans had not heard about financial abuse as it relates to domestic violence.

Throughout their marriage, Maffei never took out credit cards in his name. He left that to Ranta, telling her she was “doing her part for the family.” He kept all his money separate from hers, so that Ranta built up debt while Maffei accrued savings.

A University of Kentucky study headed by T.K. Logan showed that victims incur an average of $1,114 in property losses six months prior to petitioning for a protective order. That leaves victims extraordinarily cash-strapped, especially since most Americans would not be able to come up with a third of that amount in an emergency. And getting a protective order—much less a new place to live—is not free.

Filing fees for protective orders vary by state, but can cost up to $400. Many courts will waive fees for survivors of domestic violence and stalking—but there are still hidden costs that add up. Survivors must miss work, arrange for child care, and find a way to get to the courthouse. This can require multiple attempts, especially if a judge is unable or unwilling to hear a case at a time that works for a survivor’s schedule. Even if a survivor qualifies for legal aid, it usually doesn’t reduce the costs of child care and transportation. Nor does it make up for the hours they missed from work at a time when they are tucking away savings for divorce and child custody proceedings, which can cost anywhere from $5,000 to $35,000 or more.

“It costs money to be safe,” Logan says. “It takes extraordinary time, effort, and money to get a protective order; there’s taking time off work, the child care costs, travel, legal expenses, and more.”

After Ranta submitted her paperwork, a courthouse employee told her that Broward County’s judge looked at protective orders at the end of the day. She waited about six hours before Judge Michael G. Kaplan granted her a temporary order of protection. Maffei was served later that evening—he was legally mandated to stay away from Ranta. She filed for divorce shortly after.

But again, the costs continued to accumulate. After the judge granted the temporary order, Maffei stopped making payments to the credit cards and the mortgage on their home. He didn’t help with child care costs, which were $1,100 per month. Their house went into foreclosure and her car was repossessed. “Getting the protective order was the first step in financial devastation for me,” Ranta says.

Two weeks later, Ranta had to take time off work to testify in court. In most states, after a victim receives a temporary protective order, they must prove in court that their partner was abusive to be granted a permanent one.

Judge Kaplan refused to grant a permanent order of protection after the hearing, which meant that she’d have to go back to court often to re-file after the temporary ones expired. Before the divorce proceedings even started, Ranta owed $25,000 to her lawyer. Ranta describes herself during that period as “severely depressed and just kind of like a shell of myself.”

Maffei promised that if Ranta came back, he’d use his pension from the Air Force to help with finances. She wanted to believe him. Six weeks later, Ranta said she had to take her son to the hospital; she believes Maffei gave him an Ambien to make him fall asleep.

‘This guy cost me probably $100,000 from running away from him.’

That’s when Ranta left Maffei for the last time, and filed for another restraining order. Kaplan turned her down three times due to “insufficient evidence.”

In order to stay safe, Ranta had to move with her son several times. One day, while no one was home, Maffei broke into her first apartment, Ranta says. Nothing was stolen, but it was vandalized: There was obscene graffiti in her son’s room, and damage to her car. Even though Ranta felt like she was in danger, the leasing office for the apartment didn’t let her get out of the lease early. She moved, but refused to pay the costs of breaking the lease. To this day, she’s still suffering from a bad mark on her credit. “This guy cost me probably $100,000 from running away from him,” she says.

Ranta wasn’t granted a permanent order of protection and divorce from Maffei until after the shooting. When they went to court that time, Kaplan didn’t even see Ranta, her dad, and her son before he granted all of them permanent protective orders. She believes that Kaplan couldn’t face them because “he knew he had blood on his hands.”

Five years after the shooting, Ranta is finally safe. This April, Maffei was sentenced to 60 years in prison for his attempt to murder Ranta and 60 years in prison for his attempt to murder her father, with no chance of parole.

Jail time will not rectify the economic injustice she’s faced. “He should have to pay for everything—legal fees and all the damages he caused,” she says.

But with the current #MeToo movement drawing attention to harassment, assault, and abuse, Ranta at least feels vindicated that survivors’ testimonies aren’t being dismissed.

“Believe all women when they tell you they aren’t safe,” she says. “You cannot co-parent with an abuser.”




Here’s How Trump’s New Policy Would End Medicaid As We Know It

Today, the Trump administration unveiled guidelines that allow states to take Medicaid away from people who can’t find jobs—for the first time in the program’s 50-year history. According to a letter issued today from the Centers for Medicare and Medicaid Services (CMS) to state Medicaid directors, states will now be allowed to strip Medicaid coverage away from most working-age people The new policy will apply to “non-elderly, non-pregnant adult Medicaid beneficiaries who are eligible for Medicaid on a basis other than disability” if they aren’t working or participating in qualifying work activities for a set number of hours per week.

New analysis from the Center for American Progress estimates that as many as 6.3 million people could be at risk of losing Medicaid under this new policy.

Adding so-called “work requirements” to Medicaid has long been on GOP leaders’ wish list. Most recently, it emerged as part of Congressional Republicans’ unsuccessful efforts to repeal the Affordable Care Act last year. And Republican governors in a slew of red states have been chomping at the bit to add work requirements to their Medicaid programs; while all eyes were on the health care debate in Congress, at least 10 states requested authority to do so last year alone, with the potential to impact 640,000 people. More states are likely to follow suit after the release of today’s guidance.

While the policy might sound reasonable at first blush, upon closer inspection it’s just another strategy for ripping health insurance away from the people who need it most—unemployed and underemployed workers struggling to make ends meet.

According to the Kaiser Family Foundation, about 25 million working-age people were covered by Medicaid in 2016. Most—roughly 60 percent—were working themselves, and nearly 80 percent lived in working families. And of those not currently working, 6 percent were looking for work, 30 percent reported caregiver obligations, 15 percent were in school, 9 percent were retired, and just over one-third reported facing health problems.

It’s just another strategy for ripping health insurance away from the people who need it most

Taking away these people’s health insurance isn’t just cruel; it’s wildly counterproductive. Study after study shows that having health insurance is associated not only with better health but also with increased work capacity, which translates into higher wages and earnings. Medicaid plays a central role in making it possible for people with disabilities and chronic health conditions to work, as it is the nation’s largest provider of home- and community-based services such as personal attendant care.

History also shows that work requirements not only fail to improve long-term employment outcomes—they actually leave people worse off.

In 1996, as part of the legislation that famously “[ended] welfare as we know it,” Congress converted Aid to Families with Dependent Children into Temporary Assistance for Needy Families (TANF) and introduced a new policy requiring most adult recipients to participate in qualifying work activities as a condition of receiving cash assistance. While some TANF recipients did initially experience gains in employment—thanks in large part to the strength of the labor market during the booming economy of the 1990s—those gains ultimately proved to be short-lived. Few TANF recipients were able to secure stable, long-term employment with decent wages. Many others were unable to meet TANF’s stringent work requirements at all, due to employment barriers such as caregiving obligations, health problems, low levels of education, and criminal records. As a result, they were left without assistance even though they hadn’t found work.

Notably, while the letter sent to state Medicaid directors today says Trump’s new policy won’t apply to pregnant women or people receiving Medicaid on the basis of disability, the guidance itself admits that this will fail to protect the many people with disabilities and health conditions who don’t fall into that bucket, noting: “CMS recognizes that individuals who are eligible for Medicaid on a basis other than disability (and are therefore classified for Medicaid purposes as ‘non-disabled’) may have a disability under the definitions of the Americans with Disabilities Act.”

A study by researchers at the University of Michigan released in December suggests that people with disabilities and health conditions make up a large part of the population at risk of losing Medicaid under this cruel new policy. Two-thirds of Medicaid enrollees in that state who were not currently working reported a chronic physical illness, 35 percent reported having a diagnosed mental illness, and one-quarter reported having a physical or mental condition that interfered with their ability to function at least half of the time.

Meanwhile, the letter also concedes that many people may need “supportive services” such as job search help, child care assistance, transportation, or disability-related supports in order to work. But it goes on to make clear that states cannot use federal Medicaid funds to provide these types of services and supports.

In short, work requirements don’t help anyone work. Rather, at their core, work requirements are premised on a set of myths about poverty. First, that “the poor” are some stagnant group of people who “just don’t want to work.” Second, that anyone who wants a well-paying job can snap her fingers to make one appear. And third, that having a job is all it takes to not be poor.

Reinforcing these myths is core to Trump’s divide-and-conquer playbook. That’s why he’s so keen to smear Medicaid and other popular programs as “welfare”—a term with a deeply racially charged history, evoking decades of racial stereotypes about who is poor in this country. By using dog-whistle terms like “welfare,” he’s betting that he can paint people who turn to Medicaid and other public programs to make ends meet as modern-day “welfare queens” so we don’t notice that he’s coming after the entire working and middle class.

Meanwhile, a big part of the story here is an unforgiving low-wage labor market dominated by poverty wages and unpredictable work schedules. A minimum wage worker in 2016 had to clock an additional 244 hours to earn the same amount in real terms as she did the last time Congress raised the federal minimum wage back in 2009. As a result, many low-wage workers need to turn to public programs such as Medicaid and nutrition assistance, which have come to function as work supports when wages aren’t enough.

If Trump wanted to keep his campaign promises to the “forgotten man and woman,” he’d embrace policies that address the real problems facing struggling workers and families, like raising the minimum wage. Instead, the president remains hell-bent on taking health care away from tens of millions of Americans, over the objections of the American people—and he’s made it clear that he’s done waiting for Congress.

Editor’s note: To get involved and fight back, visit HandsOff.org to learn more about the Hands Off campaign to stop cuts to health care and other basics that help families make ends meet. 

Updated: This article was edited to include the number of people who would lose Medicaid in the ten states with pending waiver requests. 


First Person

The Wind Chill is 46 Below and Our Roof Is Full of Holes

We need a new roof but we need a new car more.

We live in a cabin in Trescott, Maine. Our nearest neighbors are a half-mile down the road in one direction and about two miles in the other, with woods surrounding us. There are two variety stores about 6 miles from us in either direction, and a larger store is 11 miles away.

Our roof has been leaking for a few years. My husband patches whenever we are able to buy a bundle of shingles and tar, and covers the undone sections with plastic tarps. He has pretty bad arthritis but we can’t afford to hire anyone to help. If we did hire someone, it would use whatever savings we’re trying to scrape together for that elusive new, used vehicle. Meanwhile, we put repairs to our current car on a must-do list since it’s two-and-a-half months past inspection and we know it won’t pass. For example, we had a rusty gas filler pipe, so gas would puddle on the ground. To alleviate that we only put in $5 at a time—smaller puddle. You wouldn’t think that would be a $300 job, but when you add up the estimate for what else needed replacing it was closer to $400.

Both of us are collecting Social Security—I have additional income through part-time work with the Senior Community Service Employment Program. We qualify for food stamps, but an experience 35 years ago has made it a choice of last resort. It was our son’s eighth birthday. We splurged on strawberries and cream for a strawberry shortcake, and on steaks, for his birthday dinner. We may have had to scrimp the rest of the month but at least we would celebrate his birthday. The looks. The cashier and the woman behind me in line watched me handing over the food stamps, and then their eyes went to the steaks and strawberries, and then back to me with an expression I could only describe as scorn.

We built our cabin in 1980-81, and except for five years in Orono while my husband went back to school, we’ve lived there ever since. Yet the Maine State Housing Authority (MSHA) wants more proof that we live there before we can complete an application for heating assistance. We don’t have electricity—we heat with our wood stove—but we’ve had propane delivered here all this time, and bank statements mailed to this address. None of that counts to MSHA, so we don’t apply for heating assistance.

We live in a state of constant anxiety, making a good night’s sleep tough to come by.

Recently, things became harder for us when we discovered our cell phone account was closed. SafeLink had provided us with a phone that would work in our area. Then, for reasons unexplained, they terminated our service without notice. (Services that help low-income seniors seem to be getting cut, or made more difficult, quite a bit these days.) It’s mean to cut a service that in rural areas can be lifesaving. Our solution was to purchase a simple Tracfone and a card with minutes. The new phone doesn’t keep a charge longer than 2 days and sometimes doesn’t ring when calls come in.

We live in a state of constant anxiety, making a good night’s sleep tough to come by. It’s well-established that prevention is cheaper than crisis care. But if your state refuses to adopt Medicaid expansion—even after the people vote for it—a lot of people are S.O.L. That’s the boat we were in, and the boat some of our friends are still in. We have Medicare but it doesn’t cover hearing, eye care, and oral care. All luxuries. My husband went without glasses for three years after the ones he’d patched with duct tape had a lens fall out and shatter. We found you could get prescription glasses online fairly cheap, but first you had to have a prescription. As far as I know hearing aids aren’t available online cheaper. Luckily, that’s not an issue for us.

So, we make do. We feel grateful for fairly good health (‘cept for the arthritis). We try to save more—although it’s the time of year when a cord of wood at $260 is my two-week paycheck, nearly. We’ve hit a cold spell—forty-six below with the wind chill. The trip to the outhouse becomes less pleasant each morning it goes below zero. And I hope it doesn’t snow too soon, because I haven’t found a pair of winter boots in a thrift store that fits.

And we have to save for that car.