Mental illness and the struggle to survive

MILLIONS OF people living with mental illness are trapped by a system that labels them as disabled while providing few, if any, real resources to help them navigate these disabilities. As a result, large numbers are consigned to poverty, incarceration and an endless struggle to get the care they need and deserve.

This is the story of one such woman, whom we'll call "Amy."

Amy has a mental illness called schizoaffective disorder. In her case, this means she hears voices, is predisposed to delusions (false beliefs), has difficulty troubleshooting problems, and is predisposed to depression and mania.

Amy is very high functioning compared to most with her disorder. "I have a system of checks and balances I think through every day to help me figure out what's real and rational and what's a symptom," she says.

Despite this, the system labels Amy as "disabled," but provides almost no resources for treatment, housing or any other basic things that she and others need. In fact, the process of applying for state assistance and medical care itself puts Amy and millions like her in desperate circumstances. Recently, Amy was swept into one of the capitalist state's largest programs for disabled people--mass incarceration--because she had no money for medication.

OFTEN, WHEN people in the U.S. dial 911 in the event of a mental health emergency, the first responders are police who use handcuffs and force--even deadly force. An immediate question that arises in the aftermath of these encounters is why are the police dispatched to these calls, instead of mental health professionals?

The answer goes beyond just a lack of resources or ignorance.

"Disablement"--a term used to describe the act of being disabled in our society and how it is an institutional, not individual, issue shaped by a series of economic, political and ideological forces--is a major form of oppression under capitalism, like racism, sexism or homophobia. The criminalization of mental illness and other mental impairments is one aspect of this oppression.

It's worth understanding how disablement began and how it oppresses today--and recognizing that disability is socially constructed and not just a result of individual impairment.

In feudal times, people were "blind," "lame" or "deaf," but these different impairments were not considered subtypes of "disability" or "impairment" any more than we think "valleys" and "canyons" are subtypes of "hollowness." People with various impairments worked to the extent possible, and they shared in the material sustenance of their family and community. Extended families cared for members with physical and mental impairments in their homes.

At the start of the Industrial Revolution, however, capitalists began to categorize people as unfit for work based on their physical and mental impairments. With industrialization, capitalists held individual workers to new and more exploitative standards of productivity and behavior. If an impairment caused, or was assumed to cause, individuals to fall short of these standards, they were fired or never hired at all. In this way, capitalism turned physical or mental impairments into "disabilities," which are oppressive limitations imposed by society

From the standpoint of the capitalist economic system as a whole, such marginalized disabled people form a significant part of the "surplus population" and the reserve army of the unemployed.

The capitalist class has long used the state--and in particular, the police--to regulate the lives of and even make such "superfluous people" disappear. At times, this has meant mass segregation in asylums, institutions, hospitals and nursing homes at the hands of the state.

In today's neoliberal America, where public funding for such institutions has been shredded, instead of going to the asylum or being cared for in the community, people with mental illness are instead frequently swept up in prisons and jails, and are incarcerated at much higher rates than the rest of the population. According to the National Alliance for the Mentally Ill, 15 percent of men and 30 percent of women booked in jail--some 2 million people per year--have a serious mental illness.

IN AMY'S case, she experienced disablement long before she was arrested.

Amy has been able to hide her condition well enough to be hired and work a series of service-sector jobs, but these jobs did not offer health insurance. Without treatment, her symptoms would eventually worsen and she could not go to work. She has been hospitalized many times. She often felt hospital staff mistreated the other patients and her, emotionally and physically.

Amy eventually got Medicaid as a result of a psychiatric hospitalization followed by intensive outpatient community mental health services. She wanted very much to manage her condition long-term, and hospitals are eager to help uninsured patients qualify for Medicaid because it's often their only hope for getting paid. Medicaid paid for Amy's outpatient medications, including high doses of Haldol, a cheap but strong, fast-acting antipsychotic drug.

Hospitals like to use Haldol to stabilize and discharge patients quickly. Amy continued to take Haldol through the community mental health center, and her doctor kept increasing her dosage as she grew tolerant.

Haldol, however, is an antipsychotic drug that is known for severe side effects, including tardive dyskinesia--an irreversible involuntary movement disorder. Tardive dyskinesia causes facial tics and tongue thrusting, which often causes those already struggling with mental illness to face social isolation and rejection from strangers who don't understand that they are suffering from medication side effects.

Amy worries because she started having facial tics before she turned 30. Her tardive dyskinesia is thus another aspect--in this case a state-induced one--of the oppression that is forced on her.

The community mental health center she attended encouraged Amy to apply for Social Security Disability (SSD). Amy uses her intellect to compensate for her impairment and does not present as mentally ill to most people. These traits, combined with the diligent use of her prescribed medication, meant that she did not appear "sufficiently disabled" in the eyes of her SSD interviewer. Like roughly 65 percent of SSD applicants, she was denied.

Amy then hired a lawyer to help her appeal for SSD. She learned she would have to wait almost two years for her SSD appeal to be heard. Even if her claim was approved on appeal, however, her lawyer would receive 40 percent of the back-benefits owed to her.

To remain eligible for SSD, Amy had to stay below an income limit of $1,100 per month, and her lawyers advised her to stay well below it. The $1,100 limit may sound like plenty of money, but a studio apartment in her area costs $1,300 per month, according to BestPlaces.net. Amy lived with friends because she could not afford anything else.

Meanwhile, Amy responded very well to treatment and was discharged from the outpatient community mental health program. She then could not find a community psychiatrist who would care for her at the Medicaid reimbursement rate, and Amy feared she would relapse. She ultimately got a psychiatrist through Catholic Charities, and he transitioned her antipsychotic drug from Haldol to Geodon, which carries a lower risk of side effects like tardive dyskinesia. Medicaid continued to pay for her prescriptions.

AMY'S CASE illustrates how disablement or disability oppression can in some cases be worse for those with "hidden" disabilities. Because capitalists divide the poor into "deserving" and "undeserving," people with hidden disabilities often are accused of feigning a disability or of being lazy.

Amy's Medicaid coverage was based on being poor and disabled. (Had her state accepted Medicaid expansion under the Affordable Care Act, poverty alone would have sufficed.) When Amy went for her annual Medicaid review, however, her denial for SSD and her discharge from the community mental health program called her status as a disabled person into question. "You look like an able-bodied woman who could get a job," a social services worker told her.

Amy was given a chance to show medical evidence of disability, and she did so. In a sick Catch-22, the "problem" was that her psychiatric treatment relieved her schizoaffective disorder so much that, according to the regulations, she could now hold down a job. Her Medicaid coverage was canceled. She was due to refill her prescriptions just a week after her Medicaid coverage ended.

Catholic Charities continued to pay for Amy's psychiatrist, but they were not able to pay for her psychiatric drugs, totaling over $300 per month. Amy told the lawyers handling her SSD appeal about her predicament, and they advised her not to apply for jobs. Her SSD hearing was over a year away. Amy knew that without her medicines, her symptoms would return quickly and put her in danger.

Friends helped pay for her medications the first month she was uninsured, but she grew ashamed to ask for help more than once. She was desperate to hold on to her sanity--and desperation can cause people to resort to desperate measures.

Amy caught pneumonia, in part, she believes, as a result of the stress of her predicament. She was forced to get treatment without insurance. Amy decided that she had to make money through an off-the-books job to pay for her medication and pneumonia care.

A marijuana seller had asked her to sell for him before, and she did not feel any moral reservations about selling pot because she believed it should be legal. Unfortunately, government officials in the state she lives in thinks marijuana is dangerous and that stopping its sale and use should be a priority.

In the middle of an opioid epidemic affecting millions and causing untold suffering, the police devoted resources to conducting marijuana sting operations.

Despite its growing legality and the immense profits made from it for a small minority of people, those like Amy at the bottom of the marijuana industry are the most at risk for arrest and facing criminal penalties. In an effort to earn a lot of money quickly, Amy sold a felony quantity of marijuana to an undercover cop and a confidential informant.

Amy does not blame anyone but herself for her arrest. But the worst aspect of disablement is that it is a widely unrecognized oppression that affects the course of disabled people's lives.

The terrible irony is that Social Security Disability regulations mandate that any pending cases be canceled when a person is incarcerated more than 30 days. Once an inmate is released, a new disability claim can be made, but the claim cannot date back to a time before the incarceration. Because Amy would spend a year in jail, her voluntary impoverishment at the behest of her lawyer was all for nothing.

Part of the reason police, not mental health professionals, are dispatched to mental health emergencies is that the state's priority is to remove mentally ill people from the community. Like Amy, mentally ill people often cannot get the medication and care they need. They often live in poverty.

The capitalist state sets up mentally ill people for failure and desperation. At this low point, the state removes people from society. A hospitalization removes a person for three days, but an arrest removes the person much longer.

In a future article, we will share Amy's experience in jail and show how police and prisons inflict further the oppression of those with disabilities.