Updated September 2024.
For 30 years, HRiA has guided people to treatment and recovery resources through the Massachusetts Substance Use Helpline. In that time, we’ve witnessed a significant shift in the role people experiencing substance use disorder (SUD) play in their own wellness and recovery. This empowering shift changes our language and helps to remove stigma. Also, it celebrates the hard work of moving toward recovery in all its forms, supporting those who are using substances, in treatment, and in recovery across the country.
The role of consumer-driven movements in peer-based support
Peer-based treatment and services for people living with substance use disorders is a manifestation of a long and historic “consumer movement” in the US, with roots in mental health, consumerism, women’s health, and HIV/AIDS, among others. This movement has advocated for a greater role of “consumers” (those living with a condition and receiving some form of health service) in their health care, treatment, rehabilitation, and/or recovery.
In the 1950s, medication enabled people with mental illness to lead healthier and more stable lives, fueling a movement toward deinstitutionalization. By the late 1960s, former patients of mental hospitals—outraged by their treatment—began organizing the “mental patients liberation” movement. Viewing the mental health system as disempowering and destructive, survivor activists worked to protect patient rights, eradicate stigma, fight forced treatment, and advocate for peer-run services (such as peer support self-help, education, and advocacy) as an alternative to the traditional mental health system. By the late 1970s, peer-run services proliferated, founded on the notion that those with similar experiences can help themselves and each other through mutual support.
Also in the late 1960s, a movement known as “consumerism” (led most visibly by Ralph Nader) encouraged consumers to distrust sellers of products and services and become informed about product reliability or service adequacy. Although originally targeting traditional goods and services, the idea of consumer sovereignty influenced other areas like human services, and encouraged people to question medical service providers, learn about treatment options and their legal rights and benefits, and become active participants in deciding what services they need or want.
In the early 1970s, the women’s health movement began asserting women’s rights to information, choice, privacy, and agency in their medical care. In 1970, the Boston Women’s Health Book Collective published Women and Their Bodies, which would later become Our Bodies, Ourselves – a book that provided accurate health information for women about their bodies, reproduction, and sexuality, and encouraged them to engage in the political aspects of sustaining good health. Movement activists argued that women could be catalysts for social change as informed health consumers. They could become their own health experts. They had a right to know about controversies surrounding medical practices. And most notably, they have been underrepresented in positions of influence and policymaking in health care issues.
With the rise of the HIV/AIDS movement in the 1980s, the basic principles of these movements coalesced to profoundly affect the broader medical establishment. When HIV/AIDS was first identified in largely (though not exclusively) gay male communities, a movement rooted in gay and lesbian civil rights developed to combat the disease and advocate for those affected. In addition to the federal government and the public, the movement targeted the traditional medical establishment, not only for the homophobia and discrimination that those living with HIV/AIDS faced, but also for the lack of opportunity to participate in critical decisions about treating a life-threatening illness. In 1983, the “Denver Principles” were drafted, demanding the rights of people living with AIDS to participate in their own health care and be involved at every level of decision making.
Consumers and peers form a recovery community
In the last two decades, the role of consumers in addiction treatment has grown, led primarily by the “new recovery advocacy movement.” The movement’s goals are to put a face on recovery, reduce stigma and discrimination, and help increase awareness that addiction is a disease and treatment works.
Led by people with lived experience and their allies, this social movement has paved the way for critical organizations such as Faces and Voices of Recovery which advocates for national change and mobilizes the recovery community. The Association of Recovery Community Organizations (ARCO) unites and supports the ever-growing network of local, regional, and statewide recovery community organizations (RCOs). The Legal Action Center, which addresses the legal and policy barriers often faced by those in recovery, and the advocacy-focused Hazelden Foundation Center for Public Advocacy (formerly the Johnson Institute) were two early leaders.
These and others pushed for peer-based recovery support services, recovery-focused redesign of addiction treatment, pro-recovery laws and social policies, and recovery-focused public and professional education and research. They also called for those in recovery to offer living testimony to the power and transformation of recovery—to celebrate it—and help break down the stigma that surrounds the disease. Although the SUD recovery movement may not use the language of the consumer movement, the tenets are similar: that those with lived experience can drive how treatment and recovery are delivered, and they can be catalysts for social and cultural change within the treatment system and wider society.
Peer leadership in action
In Massachusetts, the Massachusetts Organization of Addiction Recovery (MOAR) has led the way through legislative advocacy, community engagement, and creating and supporting a continuum of care that is inclusive of peer recovery support services. In the last decade, recovery community organizations and Recovery Support Centers (RSCs)—growing rapidly in the Commonwealth—have helped to bring addiction recovery out of the treatment centers and into the main streets. This is an important shift from isolated treatment facilities to peer support within one’s community. Peer-based and peer-led RSCs (known in Massachusetts as Peer Recovery Support Centers) are committed to driving social change in their communities. They embrace and support all pathways of recovery and offer resources to help people access the path they choose. Massachusetts currently has 39 Peer Recovery Support Centers with more opening soon.
Recovery coaches are another recent outgrowth of the movement. Coaches are individuals with lived experience of recovery who can provide sustained support for someone in their community. As inpatient treatment services become briefer and harder to access, the recovery coach offers support for an individual’s chosen recovery pathway. They listen, educate, and provide tools to overcome the recoveree’s barriers and build on their strengths, creating “recovery capital.” Although the emphasis from the early 2000s has been on the lived experience of the recovery coach, the profession has moved toward standardization with educational credentials in addition to the lived experience many coaches bring. In Massachusetts, the Department of Public Health funds the Recovery Coach Academy.
Moving forward
Participants in the New Recovery Advocacy Movement have moved away from the strictly treatment-focused or mutual aid approach, widening the lens to look at the “ecology of recovery” (1). This approach has shifted the center of intervention from the individual to the community and expanded the role of those in recovery. Individuals share their lived experience with others, proudly vocalizing their own recovery and advocating for change in the language used by the medical field and media. Those in the recovery community are breaking down the isolation and powerlessness often felt by those with a substance use disorder at individual, community, and cultural levels. People in recovery are taking ownership and expanding definitions of treatment, rehabilitation, and recovery within and outside traditional health care settings. They’ve helped to build a foundation for treatment and recovery that makes our work at the Helplines more effective and satisfying than ever.
People using substances, those who are looking to make a change, providers, and loved ones can learn more about harm reduction, treatment, and recovery and get a tailored list of services in Massachusetts, Illinois, Vermont, and Oregon.
