The evidence is thin right now of what motivated Jared Lee Loughner to walk up to a “Congress on Your Corner” meeting outside of a Tucson grocery store, shoot Representative Gabrielle Giffords in the head and then open fire on the crowd, killing six people and wounding twelve. There is strong reason to believe from Loughner’s online writings and past behavior that he suffers from some kind of mental illness, possibly schizophrenia. This, along with the scattershot of book titles that included the “Communist Manifesto” on his YouTube profile, is being used by those on the right eager to suggest there cannot be a link between the violent, over-the-top rhetoric that’s become common on the right and acts of violence such as this.
These arguments miss the point. The book one is silly, of course—the YouTube profile featured a scattershot of books (including “Mein Kampf”) mostly linked by being famous, which disinclines me to think that such a list has any meaning beyond that. As for possible mental illness, I would caution against dichotomous thinking on this subject. Mentally ill people, even schizophrenics, aren’t living in bubbles where their delusions have no relationship to the environment they live in.
If you want a good example of how this works, I highly recommend—and in general just recommend, because it’s really good—the documentary “The Devil and Daniel Johnston”, about the genius songwriter who suffers from severe bipolar disorder. Johnston was raised in a fundamentalist Christian environment where Satan is blamed for everything. Unsurprisingly, this resulted in Johnston developing delusions that the devil is out to get him, which resulted in some bad episodes, disturbing art, and an unsettling but beautiful song “Devil Town”. The relationship between environment and mental health can be contemplated without defensiveness or the emotional need to downplay the effect that breathy, paranoid right wing rhetoric that is spewed 24/7 from the likes of Glenn Beck and the mass of right wing radio could have on someone whose brain is geared towards latching onto that paranoia and taking it a step further. It’s tough to believe that Loughner would have developed a delusion about Giffords or that women who have abortions are terrorists if that over-the-top rhetoric wasn’t in the air for him to grab on to.
It’s worth noting something else from this documentary and in general, which is that mental illness does not usually or even all that commonly result in violence. Most people that have mental illnesses that result in delusional breaks do not act out violently. Like Jeff Kaye noted, schizophrenics “are far more likely to be victims than victimizers.” In addition, most violent people are not suffering from delusions. When asking why someone makes the move towards violence, it’s not enough to dismiss them as mentally ill.
Like This Story?
Your $10 tax-deductible contribution helps support our research, reporting, and analysis.
But beyond the political and environmental questions of motivation, one thing really should be clear from the New York Times profile of Loughner—at this point in time, he seems to be another example of someone who slipped through the cracks. It appears that many people noticed that Loughner was suffering from some kind of mental health problems, and yet so far there’s no indication that he got a diagnosis or even saw a mental health professional. If he had, there’s a chance that this tragedy could have been averted.
But how does such a thing happen? Loughner was pressured by his school to get a mental health evaluation, but he chose to drop out instead. This is no surprise. It’s possible that he just didn’t want help, but it’s also true that most people have no idea where to even begin if they need mental health services. Some people are lucky enough to have insurance that not only covers mental health services, but makes referrals, but those people are rarely 22-year-olds attending community college. It’s not like there’s a centralized, low-cost mental health service similar to Planned Parenthood for reproductive health services. Maybe there should be, but in our country, getting more funding for this kind of necessary health care infrastructure is like pulling teeth.
The problems with our mental health systems in the U.S. are just part of a larger problem with health care in general—people fall through the cracks, diseases that could have been prevented or minimized with early interventions instead fester and become bigger, more expensive problems down the road, and we don’t do enough to connect the available services with the patients in need. This is something that Rep. Giffords understands. Giffords supported health care reform because she understands that a universal system actually saves us money (and grief) through the “ounce of prevention” method. Giffords is also a supporter of Planned Parenthood, which provides an excellent model for patching up holes in health care access, both by being low cost but also by having a recognizable brand that points people in need in the right direction.
If a community college student with poor access to health care needs contraception, she knows who to call: Planned Parenthood. We need something like that for people who find themselves in need of mental health services. Unfortunately, the push towards cuts for social services means that we’re running away from and not towards that goal. Take the state of Arizona, where all this went down. Mental health services were cut by $36 million in 2010, a 37 percent budget cut. That’s introducing a lot more cracks to an already cracked system. And it’s increasingly looking like Loughner is one of the people who fell through the cracks in the system.
Advocates say that U.S. Rep. Tim Murphy's "Helping Families in Mental Health Crisis Act," purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.
The need for reform of the mental health-care system is well documented; those of us who have spent time trying to access often costly, out-of-reach treatment will attest to how time-consuming and expensive care can be—if you can get the necessary time off work to pursue that care. Advocates say, however, that U.S. Rep. Tim Murphy’s (R-PA) “Helping Families in Mental Health Crisis Act” (HR 2646), purported to help address gaps in care, is not the answer. Instead, they say, it is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.
“We believe that this legislation will result in outdated, biased, and inappropriate treatment of people with a mental health diagnosis,” wrote the political action committee Leadership Conference on Civil and Human Rights in a March letter to House Committee on Energy and Commerce Chairman Rep. Fred Upton (R-MI) and ranking member Rep. Frank Pallone (D-NJ) on behalf of more than 100 social justice organizations. “The current formulation of H.R. 2646 will function to eliminate basic civil and human rights protections for those with mental illness.”
Murphy and Rep. Eddie Bernice Johnson (D-TX) reintroduced HR 2646 earlier this month, continuing to call it “groundbreaking” legislation that “breaks down federal barriers to care, clarifies privacy standards for families and caregivers; reforms outdated programs; expands parity accountability; and invests in services for the most difficult to treat cases while driving evidence-based care.”
Like This Story?
Your $10 tax-deductible contribution helps support our research, reporting, and analysis.
Some of the stated goals of HR 2646 are important: Yes, more inpatient care beds are needed; yes, smoother transitions from inpatient to outpatient care would help many; yes, prisons house too many people with mental illness. However, many of its objectives, such as “alternatives to institutionalization” potentially allow outpatient care to be mandated by judges with no medical training and pushed for by “concerned” family members. Even the “focus on suicide prevention” can lead to forced hospitalization and disempowerment of the person the system or family member is supposedly trying to help.
All in all, advocates say, HR 2646—which passed out of committee earlier this month—marks a danger to the autonomy of those with mental illness.
Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force, explained that the bill would usurp the Health Insurance Portability and Accountability Act (HIPAA), “making it easier for a mental health provider to give information about diagnosis and treatment … to any ‘caregiver’-family members, partners or spouses, children that may be caring for the person, and so forth.”
For the communities she serves, this is more than just a privacy violation: It could put clients at risk if family members use their diagnosis or treatment against them.
“When we consider the stigma around mental illness from an LGBT perspective, an intersectional perspective, 57 percent of trans people have experienced significant family rejection [and] 19 percent have experienced domestic violence as a result of their being trans,” said Rodríguez-Roldán, citing the National Transgender Discrimination Survey. “We can see here how the idea of ‘Let’s give access to the poor loved ones who want to help!’ is not that great an idea.”
“It’s really about taking away voice and choice and agency from people, which is a trend that’s very disturbing to me,” said Leah Harris, an organizer with the Campaign For Real Change in Mental Health Policy, also known as Real MH Change. “Mostly [H.R. 2646] is driven by families of these people, not the people themselves. It’s pitting families against people who are living this. There are a fair number of these family members that are well-meaning, but they’re pushing this very authoritarian [policy].”
Rodríguez-Roldán also pointed out that if a patient’s gender identity or sexual orientation is a contributing factor to their depression or suicide risk—because of discrimination, direct targeting, or fear of bigoted family, friends, or coworkers—then that identity or orientation would be pertinent to their diagnosis and possible need for treatment. Though Murphy’s office claims that psychotherapy notes are excluded from the increased access caregivers would be given under HR 2646, Rodríguez-Roldán isn’t buying it; she fears individuals could be inadvertently outed to their caregivers.
Rodríguez-Roldán echoed concern that while disability advocacy organizations largely oppose the bill, groups that represent either medical institutions or families of those with mental illnesses, or medical institutions—such as NAMI, Mental Health America, and the APA—seem to be driving this legislation.
“In disability rights, if the doc starts about talking about the plight and families of the people of the disabilities, it’s not going to go over well,” she said. “That’s basically what [HR 2646] does.”
Rodríguez-Roldán’s concerns extend beyond the potential harm of allowing families and caregivers easier access to individuals’ sensitive medical information; she also points out that the act itself is rooted in stigma. Rep. Murphy created the Helping Families in Mental Health Crisis Act in response to the Sandy Hook school shooting in 2012. Despite being a clinical psychologist for 30 years before joining Congress and being co-chair of the Mental Health Caucus, he continues to perpetuate the well-debunked myth that people with mental illness are violent. In fact, according to the Department of Health and Human Services, “only 3%-5% of violent acts can be attributed to individuals living with a serious mental illness” and “people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”
The act “is trying to prevent gun violence by ignoring gun control and going after the the rights of mentally ill people,” Rodríguez-Roldán noted.
In addition, advocates note, HR 2646 would make it easier to access assisted outpatient treatment, but would also give courts around the country the authority to mandate specific medications and treatments. In states where the courts already have that authority, Rodríguez-Roldán says, people of color are disproportionately mandated into treatment. When she has tried to point out these statistics to Murphy and his staff, she says, she has been shut down, being told that the disparity is due to a disproportionate number of people of color living in poverty.
Harris also expressed frustration at the hostility she and others have received attempting to take the lived experiences of those who would be affected by the bill to Murphy and his staff.
“I’ve talked to thousands of families … he’s actively opposed to talking to us,” she said. “Everyone has tried to engage with [Murphy and his staff]. I had one of the staffers in the room say, ‘You must have been misdiagnosed.’ I couldn’t have been that way,” meaning mentally ill. “It’s an ongoing struggle to maintain our mental and physical health, but they think we can’t get well.”
Multiple attempts to reach Murphy’s office by Rewire were unsuccessful.
LGBTQ people—transgender, nonbinary, and genderqueer people especially—are particularly susceptible to mistreatment in an institutional setting, where even the thoughts and experiences of patients with significant privilege are typically viewed with skepticism and disbelief. They’re also more likely to experience circumstances that already come with required hospitalization. This, as Rodríguez-Roldán explained, makes it even more vital that individuals not be made more susceptible to unnecessary treatment programs at the hands of judges or relatives with limited or no medical backgrounds.
“Forty-one percent of all trans people have attempted suicide at some point in their lives,” said Rodríguez-Roldán. “Once you have attempted suicide—assuming you’re caught—standard procedure is you’ll end up in the hospital for five days [or] a week [on] average.”
In turn, that leaves people open to potential abuse. Rodríguez-Roldán said there isn’t much data yet on exactly how mistreated transgender people are specific to psychiatry, but considering the discrimination and mistreatment in health care in general, it’s safe to assume mental health care would be additionally hostile. A full 50 percent of transgender people report having to teach their physicians about transgender care and 19 percent were refused care—a statistic that spikes even higher for transgender people of color.
“What happens to the people who are already being mistreated, who are already being misgendered, harassed, retraumatized? After you’ve had a suicide attempt, let’s treat you like garbage even more than we treat most people,” said Rodríguez-Roldán, pointing out that with HR 2646, “there would be even less legal recourse” for those who wanted to shape their own treatment. “Those who face abusive families, who don’t have support and so on—more likely when you’re queer—are going to face a heightened risk of losing their privacy.”
Or, for example, individuals may face the conflation of transgender or gender-nonconforming status with mental illness. Rodríguez-Roldán has experienced the conflation herself.
“I had one psychiatrist in Arlington insist, ‘You’re not bipolar; it’s just that you have unresolved issues from your transition,'” she said.
While her abusive household and other life factors certainly added to her depression—the first symptom people with Bipolar II typically suffer from—Rodríguez-Roldán knew she was transgender at age 15 and began the process of transitioning at age 17. Bipolar disorder, meanwhile, is most often diagnosed in a person’s early 20s, making the conflation rather obvious. She acknowledges the privilege of having good insurance and not being low-income, which meant she could choose a different doctor.
“It was also in an outpatient setting, so I was able to nod along, pay the copay, get out of there and never come back,” she said. “It was not inside a hospital where they can use that as an excuse to keep me.”
The fear of having freedom and other rights stripped away came up repeatedly in a Twitter chat last month led by the Task Force to spread the word about HR 2646. More than 350 people participated, sharing their experiences and asking people to oppose Murphy’s bill.
Alexander’s bill has more real reform embedded in its language, shifting the focus from empowering families and medical personnel to funding prevention and community-based support services and programs. The U.S. Secretary of Health and Human Services would be tasked with evaluating existing programs for their effectiveness in handling co-current disorders (e.g., substance abuse and mental illness); reducing homelessness and incarceration of people with substance abuse and/or mental disorders; and providing recommendations on improving current community-based care.
Harris, with Real MH Change, considers Alexander’s bill an imperfect improvement over the Murphy legislation.
“Both of [the bills] have far too much emphasis on rolling back the clock, promoting institutionalization, and not enough of a preventive approach or a trauma-informed approach,” Harris said. “What they share in common is this trope of ‘comprehensive mental health reform.’ Of course the system is completely messed up. Comprehensive reform is needed, but for those of us who have lived through it, it’s not just ‘any change is good.'”
Harris and Rodríguez-Roldán both acknowledged that many of the HR 2646 co-sponsors and supporters in Congress have good intentions; those legislators are trusting Murphy’s professional background and are eager to make some kind of change. In doing so, the voices of those who are affected by the laws—those asking for more funding toward community-based and patient-centric care—are being sidelined.
“What is driving the change is going to influence what the change looks like. Right now, change is driven by fear and paternalism,” said Harris. “It’s not change at any cost.”
By staying silent, even for good reasons, we unintentionally perpetuate the assumptions that mental illness equals disruptive behavior, potential violence, and a hostile work environment, because most people aren’t given the opportunity to personally experience a mentally ill person being competent.
It’s delivered with the tone of a compliment almost every time. I don’t seem like the kind of person who has a mental illness: someone broken and unstable, borderline competent at best. Or two. Or three. With a fourth diagnosis pending. I seem capable and intelligent and professional—all words that, according to depictions put forth by society and the media, don’t sync with the phrase “mentally ill.”
Many of us whose conditions don’t require treatment that causes extended work absences, like periodic hospital stays, remain hidden for personal and career reasons. We rightly fear retribution or discrimination at work, and being seen as broken or incompetent in our personal lives. But by staying silent, even for good reasons, we unintentionally perpetuate the assumptions that mental illness equals disruptive behavior, potential violence, and a hostile work environment, because most people aren’t given the opportunity to personally experience a mentally ill person being competent. Instead, they’re left with media and fictional depictions that paint us as dangerous and volatile, thus further incentivizing us to stay hidden.
Like This Story?
Your $10 tax-deductible contribution helps support our research, reporting, and analysis.
If this question were asked by loved ones who wanted to learn what I need, rather than being unhelpful bystanders by asking unnecessary, potentially harmful emotional labor of me, I would respond with kindness. But this is the sort of question asked by everyone from potential partners to employers and contractors who want to know what they’re getting into by inviting me into their lives. When I answer that I have been diagnosed with extreme, disability-level attention deficit disorder (ADHD), dysthymia (intermittent, chronic depression), anxiety, and likely post-traumatic stress disorder, people cringe because that’s more than a mouthful. Even people who incorrectly assume those are all fixable conditions that I can get over or learn to live with think—and say—things like: “Wow, that’s…a lot.”
Having to repeatedly disclose, educate, make promises about our competency, and ask for understanding from those around us are some of the things that are actually a lot for people with mental illnesses. We cannot constantly shoulder this along with our already packed schedules balancing doctors’ appointments, trips to the pharmacy, and tracking medications and side effects. And those are the mere inconveniences (and expenses) for those of us who have access to decent mental health care. The Affordable Care Act reduced insurance discrimination, but has left predictable, sizable gaps in care for many of us, according to the National Institutes of Health and backed up by reporting atThe Washington Post,U.S. News and World Report,USA Today, theNew York Times,Newsweek—name the outlet, it has likely published on it over the last four years.
The hurdles that are more challenging to report on because they are cultural and systemic are the myriad ways disclosing our mental health conditions can affect how we are treated in personal relationships as well as the workplace.
As I dealt with poverty over the years, my friends and family—and even my employers in the service industry—mostly attributed my struggles with timing and economic issues in the country at large. I was committed to the “making it work” life philosophy. I woke up every day and begrudgingly grabbed my bootstraps and pulled till I fell down. People said things like “Oh, she always lands on her feet!”—as though that’s effortless, not a perpetual conscious effort to never burn bridges and be a reliable employee. I maintained my competent reputation, one I depended on to make sure I always had enough work to pay rent. I couldn’t have risked taking time off to see doctors and therapists, even if my insurance before the ACA would’ve covered it.
For a long time, I also didn’t want to be officially labeled “mentally ill.” The reality of a “permanent record” may be overblown by our grade school experiences, but the concept is still very much true thanks to employee reviews, medical records, and the like. Once you’re labeled, you’re labeled. There’s no guarantee, even if you like your current boss, that you’ll like their replacement and you risk co-workers finding out and treating you like you’re broken or possibly dangerous.
The Americans With Disabilities Act (ADA) may require “employers to provide reasonable accommodations” for those of us who are qualified to do a job, but that requires disclosing diagnoses with massive stigma to potential and current employers. It also often requires having a diagnosis that’s recognized as a disability under the law.
The Equal Opportunity Employment Commission (EEOC) guidelines say: “A reasonable accommodation may be obtained for any condition that would, if left untreated, ‘substantially limit’ one or more major life activities, which include brain/neurological functions and activities such as communicating, concentrating, eating, sleeping, regulating thoughts or emotions, caring for oneself, and interacting with others.” However, the diagnoses that come with federal disability status—major depressive disorder, bipolar disorder, post-traumatic stress disorder, obsessive compulsive disorder, and schizophrenia—are typically more recognizable as conditions requiring accommodations. My “less serious” conditions have been easily brushed off by employers and contractors. Everyone has been distracted, felt sad, and been nervous before a presentation, leading many to think my ADHD, dysthymia, and anxiety are passing rather than constant. Sure, I have easier days and rougher days, but I don’t “get over it” and there’s no magic cure—trust me, I’ve looked for one. It’s a long road to a modest level of wellness and some days it straight-up sucks.
Because my conditions are ongoing, and federal law says I don’t have to experience symptoms while I’m actively being treated for my illnesses in order to receive “reasonable accommodations,” it shouldn’t matter if I never feel anxious or nauseated or dizzy. But, I have yet to have an employer or contractor who cared that the EEOC recognizes the way a cubicle setting around other people or required, unnecessary, near-constant engagement with co-workers causes me to basically feel like I’m coming apart at the seams.
“A condition does not have to result in a high degree of functional limitation to be ‘substantially limiting,’” according to the EEOC. “It may qualify by, for example, making activities more difficult, uncomfortable, or time-consuming to perform compared to the way that most people perform them.”
Under this interpretation, I would also seem to qualify for accommodations to mitigate medication side effects that cause about 45 minutes of dizziness in the morning and difficulty focusing even with treatment. When I was working jobs without paid time off, the need for mid-morning breaks to lie down and ride out side effects would have been laughed off. So, instead, I, like many others, stayed hidden.
Eventually, my day-to-day frustrations felt impossible to hide. Talking about my anxiety on Twitter became a coping mechanism. And once I started the process of seeking treatment I realized how complicated and hard it was; I found a lot of relief writing about it openly through the feedback from others who feel less alone, weird, and overloaded with self-blame.
This has gone hand-in-hand with my transition to freelance work. When I’m at home, I can work from my bed and not have much disruption in my schedule. This would be impossible in any typical work environment. I can eat on a schedule dictated by my medications (some have to be taken on an empty stomach, others with food); take a nap if nightmares kept me up; shut off communication to keep from being overloaded; and somewhat control my schedule to make time for doctors’ appointments. I fear new medication side effects less because I don’t have to worry whether or not I’ll be able to drive to or from work, sit up for a full eight- to ten-hour day, or be extremely thirsty. Drinking water constantly also means a stretch of frequent bathroom trips—less of an annoyance at home.
Working from home can’t solve all my problems, though, because I still have to work with and for other people. I can’t tend to every need, for example; I had to reschedule my psychiatrist and therapist last week to write on deadline. Even as a freelancer, I’ve heard plenty of microaggressions and ableist comments: “Why is that taking you so long?”—with no words of appreciation for how much more quickly my neurobiology processes other tasks. I’ve had my need to turn off communication when no tasks were scheduled for one contractor so I could meet other deadlines held against me. For some, having a message app on constantly might not cause problems; for me, it created a perpetual spike in my anxiety.
Still, I was held accountable for someone else’s inability to plan ahead, rather than given an apology for an attempt to interrupt me while I was tending to other work. Because I don’t “seem sick,” and I do good work, I’m expected to go above and beyond to take on tasks that aren’t in my job description or overload myself.
As a consequence of staying hidden, our performance and participation at work and in life suffer even while we manage to “pass” and be seen as “fine” or “normal.” And because we suffer in silence, should any additional complication or symptom—or simply our finally having had enough of dealing with being miserable—lead us to finally seek care, we can have trouble being believed. We experience the ultimate Catch-22: We are seen as just capable enough that we aren’t believed, while being criticized or ostracized when we can’t conform to neurotypical (not affected with a developmental disorder) culture.
This can even bleed over into our doctors’ offices; most screening questions from primary care physicians (still the gatekeepers in our insurance-based medical system) center around symptoms that cause life disruptions. If we have managed too well for too long, no matter how we felt internally, we can be brushed off or receive inaccurate diagnoses. Nearly every conceivable iteration of this has happened to me. I’ve had misdiagnoses, missed diagnoses, revised diagnoses and had to plead my case to get someone—anyone—to maintain my prescriptions after a move while I shopped for a psychiatrist in my new area.
There is no easy fix for these challenges and discrimination; culture change through awareness, education, and workplace trainings will take time and we have to demand them. We need better enforcement of existing EEOC guidelines and ADA law as well as a concerted effort from employers to provide better working conditions. Company-wide flex time, work from home options, and paid personal leave are all policies typically thought of as “family-friendly” that would help everyone and make accommodations largely unnecessary. When everyone can take the time they need, those whose flexibility requirements are tied to a mental illness wouldn’t stand out or be subject to disciplinary action if they chose not to disclose their condition. And as more of those of us who do choose to disclose come forward about our lived experiences, we become a powerful advocacy bloc able to insist on more inclusive, supportive workplace policies.