By Neesa Sunar

Many who have mental illness disabilities suffer from isolation and are disconnected from others. They can experience social anxiety, feel nervous, and be unable to connect or make friends. Some have agoraphobia, where they are unable to leave their home. Past traumatic experiences such as domestic violence or sexual abuse also can cause one to not trust others. Living in an isolated area with little mental health resources can also prevent one from finding trustworthy people. With isolation, there is a lack of social support, and opportunities for allyship with others are scarce. Some may not even have support from their families.

The internet is a boon for those isolated in waking life. They can reach out online, especially through Facebook groups, and by following bloggers and advocates on Twitter and Instagram feeds. As people interact with one another, they ally together by sharing experiences and supporting one another. Socializing behind the safety of a screen also can make a person braver in finding friends. While many studies show that social media can cause depression and loneliness, especially amongst adolescents (Collier, 2013; Barry et. al., 2017), other studies have emerged that tout the positive effects of online connection. Naslund et. al. (2014) describe that YouTube vloggers create communities that support viewers.

When people in the mental health community support and ally with one another without the intervention of degreed clinicians, this process is called “peer support.” This occurs both in-person and online. Ideally, all parties give and receive freely from one another. There are no power imbalances, and everyone respects one another’s worldview. (Mead, 2001). People are encouraged to self-determine their vision of wellness, which may vastly differ from a treatment plan that clinician demands. The healing that results from peer support demonstrates the strength of allyship between consumers. 

“Peer specialists” are mental health professionals who uphold the values of peer support. They have lived experience with utilizing psychiatric services. Some also have substance use and/or forensic histories. Peer specialists work with people who are similarly suffering, offering assistance through the sharing of experiences and empathy, striving for equality and balance of power. This directly counters the standard practice of psychiatrists and therapists, who enforce a top-down relationship where the patient has no say in their treatment plan. (Stroul, 1993).

Amongst the general populace, there is little awareness about peer specialists and their work. It is a concept mostly practiced and discussed by the Consumer/Survivor/Ex-Patient (C/S/X) community. This group first emerged in the late 1960s alongside other civil rights movements of the time. In various cities independently, people who experienced trauma and abuse in the mental health system banded together to form advocacy groups, demanding systemic change. Group members also provided peer support for one another, which led to an alternative method of engagement that completely countered the typical clinical model of care. Thus, peer support was born. Still today, the C/S/X movement continues through the work of peer specialists. 

Peer specialists use specific non-clinical modalities that allow for the peer to ally with the consumer, aiding them in achieving a satisfactory level of wellness. Intentional Peer Support (IPS) is a way of interaction, where a practitioner and person form a partnership to encourage growth. Both parties develop in this process through conversation, where they investigate and learn from their own truths. 

Another excellent example of the power of allyship is found in Open Dialogue, a system of engagement originating from Western Lapland, Finland in the 1980s. When a person experiences mental discord, the person’s supporters all meet together to engage in dialogue with one another. The person affected, their family, perhaps close friends, and mental health professionals ally together to encourage the wellness of the person. Everyone speaks freely without fear of judgment, including the person. 

Peers specialists also serve as staff in a particular type of community resource: crisis respite centers. “Respite” care is an alternative to hospitalization. When a person senses they are declining, they can voluntarily sign themselves into respite to rest and recover. Stays usually are limited to seven days. Respites are staffed by peer specialists, who offer mutual conversations and groups that can help a guest recover. Instead of being locked down in an institution, respites allow for guests to leave the premises. This enables one to continue outside obligations without disruption. 

Despite the efficacy of the peer specialist profession, many peers stand on shaky ground. Workers often are paid minimum wage, and there is little opportunity for upward mobility. Funding for programs is scarce. Non-peer coworkers may not understand the peer specialist’s non-clinical perspective, and workers may be estranged from the rest of the treatment team. (Chinman et. al., 2008). Given that peers have their own mental health struggles, it can be difficult to maintain their own wellness. (Bracke et. al., 2008).

Unlike other civil rights movements from the 1960s, mental health advocacy efforts and rights still flounder. This may be caused by the rhetoric of big pharmaceutical companies. Most people who receive psychiatric services believe that mental illness is a “chemical imbalance,” which must be treated with medications. By relying on the “expertise” of pharmaceuticals and clinicians, people remain uninformed about the power of mutual peer support and its capacity for healing. Instead, people see themselves as powerless and broken, unqualified to help themselves let alone another. This surrender ultimately causes division and a lack of allyship within the community.

It does not help that the trajectory of the mental health civil rights movement is being controlled by pharmaceuticals and the compromised non-profits they fund. The National Alliance on Mental Illness (NAMI) and the Treatment Advocacy Center (TAC) are notorious for collecting donations from pharmaceuticals. NAMI touts that they are a grassroots organization that advocates for the mental health community, originally founded in 1979 by a group of family members. Yet their community offerings merely promote the medical model approach to mental health care. NAMI educates family members on how to coddle their “impaired” loved ones, brainwashing them into believing pure medical model rhetoric. Mental health advocacy intertwines with the pharmaceutical agenda of “hope for the cure.” 

TAC also promotes initiatives that strip power from the consumer. They strongly advocate for Assisted Outpatient Treatment (AOT), where a person is forced into court-mandated psychiatric treatment due to prior hospitalizations and/or forensic history. While AOT is shown to yield positive results such as a reduction of recidivism into the mental health system, TAC’s other initiatives combine to impart a sinister agenda. They cite anosognosia as a “key issue” affecting those with mental illness. Anosognosia means “lack of insight,” where a person does not realize that they have an illness. This lack of awareness indicates that they are “too ill to seek help,” therefore justifying involuntary treatment. TAC reaches out specifically to policymakers, encouraging partnerships to “assist” them in creating laws and regulations that would “manage” the mentally ill.

Members of the C/S/X movement are extremely worried about these entities taking power over peers and dictating the future of mental healthcare.  Currently, there exist online forums where lively peer discussions take place, including sites like Mad in America and MindFreedom, and also Facebook groups like the Icarus Project. However, if humane systemic change is to happen on a massive level, the peer specialist community must reach out beyond its forums. 

Currently, peers petition to politicians and attend lobbying events to advocate for laws that benefit the peer community. For example, the New York Association of Psychiatric Rehabilitation Services (NYAPRS) organizes a yearly legislative event, where peers appeal to politicians individually for laws benefiting the community. New York peers have asked for the creation of new supported housing units, mental health training for police and crisis intervention teams, ending solitary confinement, and raising the age of adult incarceration from 16 to 18. Progress is slowly made each year.

Peers must further strategize on how to get our message out to the public, changing the hearts of laypeople and mainstream society. I believe that this can be accomplished online. Peers must join “unwoke” mental health communities on social media to share their knowledge and engage in conversations. Peers must be guests on podcasts and writers of articles on prominent websites, thereby reaching otherwise uninformed people. 

There is yet another struggle. Many mental health enthusiasts are strongly aligned with their personal perspectives and can feel triggered or deeply offended by alternative perspectives. This exists on both sides. For example, one who likes their medications may be triggered by another who decries medications as poison. One who deems psychiatrists as evil may feel angry when another person states that they are an invaluable expert. The vision for a future of no stigma also is widely varied. Some envision a future where medications and/or medical procedures can completely eradicate mental illness. The C/S/X community desires less dependence on medications and more reliance on holistic, life-affirming interventions such as social supports, spirituality, and personal freedoms to express creativity. We in the C/S/X community must adopt an attitude of calm patience when engaging others. Perhaps we can uphold the sentiments of IPS and Open Dialogue, where we allow others tospeak their truths in a non-judgmental way. We must acknowledge that multiple truths exist, as painful as this may feel. Yet as we learn from one another, we can ally together to create a long-overdue mental health civil rights movement. The right way. 


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