Peer support, mad pride and disability justice

By Luke Romano

February 2022

Do the phrases peer support, mad pride or disability justice ring any bells? If your graduate education was anything like mine, probably not very many. In this article, I’d like to offer an introduction to these terms and the social movements with which they are associated. My goal is for every counselor to walk away from this article with increased curiosity regarding these terms’ significance and relevance to our work and equipped with some practical tools to enhance our professional skill sets.

Some of the perspectives presented in this article are critical of the mental health professions. As counselors, we know that integrating critical feedback from our clients allows us to repair ruptures and ultimately strengthen the therapeutic work. The point isn’t to agree or disagree with client feedback but rather to take it seriously. Similarly, my belief in the importance of these perspectives is related to how they enhance my counseling practice. Putting new ideas on the table doesn’t mean taking other ideas off.

My personal background might contextualize my familiarity with the content presented in this article. Prior to my career trajectory as a counselor and educator, I had devoted more than 10 years to participation in various social justice movements and organizations. In the course of my journey, I had encountered and involved myself in peer support, mad pride and disability justice ideas and social spaces.

I’m now an early career counselor working toward licensure in Pennsylvania. My primary occupation is as a child and youth outpatient counselor in a community mental health clinic in Philadelphia. I also work part time with adults at another practice and recently gained experience as a course instructor in a counseling graduate program. Many of the lessons and principles I learned from my experience as an activist underpin my clinical work. My hope is to bring these lessons and principles to a wider audience in the world of professional counseling.

What is peer support?

Peer support is a tool of the mad pride and disability justice movements, in addition to recovery communities such as Alcoholics Anonymous. Peer support generally refers to acts of care that exist outside of the mainstream health care system, provided by and for those with lived experience who are critical of the hierarchy between professionals and individuals. You may be familiar with the existence of publicly funded peer support specialist certifications and practitioners in states such as Pennsylvania, Tennessee and New York. However, prior to the professionalization of peer support services, peer support practice arose as a grassroots response to the systemic mistreatment of patients in mental hospitals. Peer support represented a pushing back against harmful and coercive functions and practices evident in the medical model of mental illness.

The medical model of mental illness is here defined as an understanding of mental distress wherein symptoms indicate an underlying pathology related to the structure and function of the brain. Although counselors more often cite a “biopsychosocial” model that incorporates biological, developmental and societal factors in conceptualizing mental distress, the “bio” component remains the most prominent foundation on which the mental health system functions. Regardless of our individual inclinations toward developmental conceptualizations of distress or trauma-informed care, most of our clients still require a diagnosis out of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to receive treatment.

Robert Whitaker’s 2002 book Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill thoroughly reviews the history of systemic mistreatment of those with psychiatric labels. In Whitaker’s view, current psychiatric and mental health practices remain impacted by and situated within a historical legacy of discrimination and mistreatment. Forced hospitalization and inadequate informed consent related to medication use are two common examples of mistreatment cited by peer support, mad pride and disability justice activists. Peer support practice arose as an alternative to mainstream mental health while demonstrating that communities of mad or disabled individuals can care for themselves, sometimes with better results than when left in the hands of so-called experts.

The peer support movement simultaneously arose out of necessity. The onset of neoliberal domestic policy during the 1970s and 1980s in the United States involved closing down psychiatric hospitals and filling prisons with those who were mentally ill. It was under this context that communities of those with psychiatric labels learned how to care for themselves without the assistance of professionals. Texts to further investigate the successes and lessons from these movements include Outside Mental Health: Voices and Visions of Madness, edited by Will Hall, and We’ve Been Too Patient: Voices From Radical Mental Health, edited by L.D. Green and Kelechi Ubozoh.

Practical applications

It can help to have knowledge of peer support resources in your area. Peer support groups (whether institutionally sanctioned or autonomously organized) can serve as a useful supplement to traditional one-on-one counseling. They may serve as an alternative for some. Project LETS is a national resource offering a peer crisis line along with various programs, trainings and workshops. It has chapters on college campuses across the United States. Trans Lifeline is an excellent peer resource for our transgender and nonbinary clients. Whether our clients choose to use these resources as a supplement or an alternative to professional counseling, we can respect their self-determination in finding services that suit their self-identified goals and needs.

We can integrate lessons from the peer support movement by centering the self-reported lived experiences of our clients. This could mean using our DSM-5 diagnostic framework and following associated treatment protocols. This could also mean tempering or modifying that approach to better suit client preferences. For instance, the Hearing Voices Network in the United Kingdom is a peer support network that includes members who view psychosis as transformative or spiritually significant and reject medication and hospitalization as helpful forms of treatment. If we encounter such individuals in our practice, we can operate out of a place of respect for their choices while weighing other ethical and professional considerations.

As we aspire to combat racism in our profession, we should also be aware of non-Western cultures that celebrate or revere those with symptoms that we might label psychotic, further integrating these individuals into their communities rather than forcibly isolating them — often with better health outcomes. The 2016 documentary Crazywise explores this topic in depth, albeit from a predominantly Western lens. 

Standard E.5.b. of the 2014 ACA Code of Ethics asks us to “recognize that culture affects the manner in which clients’ problems are defined and experienced.” It is an ethical imperative to acknowledge the limitations of our profession and to allow outside resources and non-Western perspectives to shape how we conceptualize our work with each client.

What is mad pride?

In the 1960s and 1970s, organizations led by psychiatric survivors (individuals who identified as having survived harmful or abusive psychiatric interventions) began to emerge. Groups such as the Insane Liberation Front and the Network Against Psychiatric Assault organized demonstrations across the country, including demonstrations in San Francisco against the use of electroconvulsive therapy (ECT) that led to the city discontinuing use of ECT for 10 years. Psychiatric survivors began to organize under the banner of “mad pride” in the early 1990s, with the term uniting many social movements composed of current and former users of mental health services.

The psychiatric survivor and mad pride movement is not to be confused with the anti-psychiatry movement. The anti-psychiatry movement was pioneered by thinkers such as R.D. Laing and Thomas Szasz who were critical of psychiatry but who were not psychiatric survivors themselves. One difference between the anti-psychiatry movement and the modern mad pride movement is that mad pride activists are careful not to criticize or shame those who have benefited from conventional psychiatric interventions.

Judi Chamberlin’s 1977 book, On Our Own: Patient-Controlled Alternatives to the Mental Health System, was an important text in the psychiatric survivor movement. In it, she used personal experience to critique involuntary hospitalization and coercively administered medication as well as expose human rights abuses in psychiatric wards. However, the mad pride movement offers more than just a critique of the mental health system.

The mad pride movement views mental distress as situated within social, political and economic circumstances. Fireweed Collective is a prominent organization associated with mad pride. I have had personal involvement with an earlier iteration of this organization known as the Icarus Project. According to the Fireweed Collective website, the Icarus Project “conceived mental health struggles not as faulty brains, but in the context that we live in a world that is not healthy for us.” Oppressive structures — colonialism, white supremacy, patriarchy and more — are seen as implicated in, if not directly responsible for, individual experiences of mental distress.

Furthermore, healing from trauma is seen as a tool in the fight for a better world. The Fireweed Collective “seeks to disrupt the harm of systems of abuse and oppression, often reproduced by the mental health system.” This falls in line with the ethical imperative stated in Standard E.5.c. of the ACA Code of Ethics for counselors to “recognize historical and social prejudices in the misdiagnosis and pathologizing of certain individuals and groups and strive to become aware of and address such biases in themselves or others.”

Practical applications

We can integrate the values and lessons from the mad pride movement into our practice by affirming what kind of relationship the client has, or wants to have, to their diagnosis. Some people feel validated or empowered by receiving a diagnosis that they believe reflects their lived experience. Others feel boxed in or inappropriately pathologized by their diagnosis. Standard E.5.d. in the ACA Code of Ethics states that counselors “may refrain from making and/or reporting a diagnosis if they believe that it would cause harm to the client or others.”

Similarly, some people have a positive relationship to their medication, feeling they benefit from it. Others feel disinterested in psychiatric medication or harmed by their experience with it. We can advocate for our client by collaborating with their doctor or psychiatrist to center the treatment goals and preferences of our client. By centering the self-reported lived experience of our client, we avoid harm while encouraging a sense of self-determination in treatment and, by extension, life — a healthy developmental marker for which we should be aiming.

Mad pride activists are often opposed to the practice of involuntary hospitalization. A growing body of research finds higher suicide rates post-discharge among those involuntarily hospitalized compared with the general population, raising questions about the effectiveness of involuntary hospitalization. One study published by JAMA Psychiatry in 2016 revealed a suicide rate approximately 15 times the U.S. national suicide rate within three months post-discharge. 

Regardless of the meaning we make or don’t make of such findings, counselors should consider them alongside mad pride narratives when faced with the decision to hospitalize someone. We can include these considerations in our ethical decision-making processes alongside “consultation; consideration of relevant ethical standards, principles, and laws; generation of potential courses of action; [and] deliberation of risks and benefits” as outlined in Standard I.1.b. of the ACA Code of Ethics.

What is disability justice?

According to Leah Lakshmi Piepzna-Samarasinha, author of Care Work: Dreaming Disability Justice, disability justice “centers sick and disabled people of color, queer and trans disabled folks of color, and everyone who is marginalized in mainstream disability organizing.” Disability justice asserts that ableism — discrimination against and oppression of the disabled — is “locked up tight” with all systems of oppression. The idea that disabled people require “fixing” underpins ableism. The disability justice framework arose out of a critique of the disability rights movement for failing to examine the roles of oppression and identity in experiences of ableism. It advocates for leadership by those most affected.

The disability justice framework builds off of the social model of disability. This model defines disability as resulting from an impairment (including pain, paralysis, fatigue, etc., that would exist regardless of society) plus inaccessibility. Inaccessibility is understood as a society that accommodates the needs of nondisabled people (such as the construction of stairs in buildings) while failing to accommodate the needs of disabled people. As such, disability is a social construct that happens only when an impairment meets an inaccessible society.

Although many issues raised by disability justice writers and activists are of relevance to counselors, the concept of sanism — discrimination and oppression of those who have (or are judged to have) a particular mental trait or condition — is of particular significance in mental health settings. Sanism is understood as a form of ableism. Some disability justice advocates view involuntary hospitalization as an example of sanism, conceptualizing the practice as a violation of basic human rights enabled by cultural stigma toward those with a mental illness or disability. Furthermore, we can consider the ways in which this stigma may be compounded by racial and other biases with the inclusion of an intersectional feminist lens.

Practical applications

Center and adopt your client’s identity and use of language on a case-by-case basis. Many counselors are taught to use person-first language (e.g., Sam has autism). However, increasing amounts of disabled people are asking to be referred to using identity-first language (e.g., Sam is autistic). This is why I’ve chosen to use identity-first language in this article. 

The rationale for this shift is due to an increasing acceptance of disability as an identity or part of who someone is rather than an illness or something to be cured or extinguished — the latter notion having historical roots in the eugenics movement. The nuances of language vary from individual to individual and disability to disability. If you are unsure what type of language your client prefers, simply ask.

Adopting a curious stance that avoids assumptions will assist you in your work with disabled populations and any marginalized or oppressed population with which you might not be familiar. Use the motto of the disability rights movement — “Nothing about us without us” — as your guide. Where did you learn what you know about disability? If it wasn’t from a disabled person or source, you should revisit and examine your knowledge base and assumptions.

Consider the ways in which explicit and structural ableism show up in your practice or at your workplace with the following questions: Is your workplace wheelchair accessible? Do you frame disability as either tragic or inspirational? Do you conceptualize the needs of your disabled clients with the same amount of depth and complexity as you would with your nondisabled clients? Is your workplace scent free? Do you speak for your disabled clients in situations in which they are able to speak for themselves? Have you ever asked invasive questions about the medical history of your disabled client? Do you view disability as something to cure? Do you feel like you need to rescue your disabled clients from their disability? How does ableism intersect with other forms of oppression to create unique social and institutional barriers for each client?

Also take some time to examine your internalized ableism. Do you ever feel like you’re a burden when you have a need? Do you ever feel like you don’t belong because of a perceived deficit? Do you feel “lazy” when you are unproductive? Do you blame yourself when you are unable to accomplish something? How comfortable are you when you need to ask for an accommodation? Do you compare yourself to more “successful” people? How does your internalized ableism interact with other forms of internalized oppression such as racism or sexism? Consider how the answers to these questions might influence how you conceptualize and work with your disabled clients.

There is an entire world of discourse and activism related to disability justice, the surface of which has barely been scratched in this article. Prominent scholars and activists to look to include Patty Berne, Mia Mingus, Stacey Milbern, Leroy F. Moore Jr., Eli Clare and Sebastian Margaret.

Conclusion

The mad pride movement understands external circumstances (poverty, racism, transphobia, etc.) as implicated in individual experiences of mental health. Similarly, disability justice views our dominant culture as “disabling” rather than locating disability exclusively within the individual. Peer support is a method with which these communities care for themselves, whether due to necessity, rejection of professional services or both. 

Knowledge of these perspectives enrich the tools of our profession rather than detract from them. Turning toward critical feedback allows us to repair historical and individual ruptures, broaden the scope of our practice and advocate for our clients while connecting them to helpful resources.

• Project LETS
• Fireweed Collective – Fight to heal, heal to fight
• Trans Lifeline
• Mad in America - Science, Psychiatry and Social Justice
• Madness Radio
• Hearing Voices Network (hearing-voices.org)
• CRAZYWISE documentary film (crazywisefilm.com)

Luke Romano is an early career mental health counselor, educator and psychoanalytic candidate in Philadelphia. With a background in mad pride and other political activism, Luke is interested in the intersections of decolonial and anti-capitalist values and practice, psychoanalysis and the counseling profession. Contact Luke at luke.j.romano@gmail.com.

Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, visit ct.counseling.org/feedback.