Forward – While I conducted this interview with Carol McDaid over the phone in mid May 2021, recently I also had the opportunity to visit with Carol and her husband John Shinholser founders of the McShin Foundation a few weeks earlier in their home. I visited as spring was breaking and the pandemic was lifting. They put me to work in their kitchen as we made dinner together. Later, we sat by a fire that John fed with old pallets (and what looked like old lawn furniture) and talked about the history of the recovery movement. We discussed what we could do to move it forward. It was an important visit for me and time with them helped put some bounce back into my step. Few people have poured more of their lives into the purpose of sharing recovery than this couple. It is clearly a labor of love. It was an honor to spend time with them. I hope that you enjoy reading this interview half as much as I enjoyed gathering it.

My name is Carol McDaid, I am a person in long term recovery. My day (and sometimes night) job is being the Principal at Capitol Decisions, Inc. Capitol Decisions does policy work with special expertise in addiction and mental health policy. Helping to craft and pass laws to support better care for our people has been my life work. One of highlights of my time serving in this arena was an effort that led to a federal law to help people with addictions access care. This was when I was strategist and advisor to the Parity NOW Coalition, which was influential in passage of the 2008 “Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA).” This landmark legislation requires insurers to treat addiction, mental, and physical health problems equally. The Parity NOW Coalition became a model for also successfully advocating for inclusion of addiction and mental health benefits in health-care reform legislation. Those legislative actions tie into the topic of this interview. That historic 2001 Recovery Summit helped to develop and organize the recovery constituency we needed in place to get this historic law passed.

As far as the 2001 St Paul Recovery Summit, it took some effort for me to get into that room. At the time, I was associated with treatment providers because of my work with Capital Decisions. The organizers wanted to keep a focus on recovery, so I had to use my lobbying skills to get in there. I cared about recovery and I wanted to be in the room. I think many of us felt that way because it was the first time the resources were there to accomplish the task. We all wanted to establish a national recovery advocacy organization and it had enough support at the time through a $250,000 grant from the Robert Wood Johnson Foundation to be successful. There had been prior efforts to get it off the ground, but this felt different. I suspect that one of the reasons I was included was that I had made a decision a few years earlier in my work as a lobbyist working on parity to be open about my own recovery status. It is important for people who were not around back then to understand that this was not something people in recovery did back then.

There are two moments that have stayed with me since that summit twenty years ago. The first was watching the interaction between Senator Paul Wellstone and Representative Jim Ramstad. It was really clear that they cared deeply about our issues and that there was common ground that both of them felt strongly enough about to rise above partisan dynamics. It took a lot of political courage, and we need to honor what they did for all of us. They are both gone now, but their leadership and the way that they worked so hard for us made a lasting impression on me. It is important for people to understand that throughout our history, we have only been able to move things forward when our needs resonate on both sides of the aisle. Addiction does not know party lines and impacts all of our families. These two men found ways to work together on our issues that has left us an important and lasting legacy. That they did so is something that needs to be remembered and honored. It is also instructive for any future effort; we only succeed in our efforts when we have such bipartisan unity.

The second memory was at the very end of the event. We had these little torch-like things that they gave us all that emitted sparkles and lit up. As the event ended, we gathered as one in a circle and held these little torch sparkly things in the air. Together, we held a moment of silence for all we had lost and for the hope that we could come together and form something larger than all our individual efforts by working together. I stood there in silence and felt a sense of hope. I still have my sparkly torch. This work can have rough days, and on particularly hard ones I pull it out and feel that sense of unity in our movement and the hope I first experienced on that day and in that moment. 

It has to be acknowledged that a huge factor in us coming together was that $250,000 dollar investment in us by the Robert Wood Johnson Foundation. It felt like a fortune at the time. There was almost no money around back then at all for things focused on recovery. Other than the SAMHSA Recovery Community Services Program there was virtually nothing for us. I think a lot of us knew this was probably are best opportunity to get a national recovery advocacy effort off the ground. As I mentioned there had been prior attempts, probably the most well-known of those efforts was when Senator Harold Hughes set up the Society of Americans in Recovery (SOAR) a decade earlier. What is also true is that there was a growing desire in the recovery community to start living recovery out loud. At that time, it was controversial and risky to even acknowledge your recovery status, the stigma against addiction and recovery was that strong.

Another factor is that people in recovery were not in the hearts and minds of the treatment providers in that era. A lot of the private sector care across the county at that time was private pay only. If you didn’t have money, you did not get help, much of the services that were available across the county was in this acute care model and didn’t really even connect with the recovery community. Much of the nationally treatment system was aligned around the acute care model because that is where the money was. It was not an inclusive model. We wanted to change that dynamic and focus resources on long term recovery supports. We are still working on that goal, but that is another story.

We have accomplished quite a lot!

The summit itself was organized through the Johnson Institutes Alliance Project, which led to the establishment of Faces & Voices of Recovery, our own national organization focused on advocacy led by and for people in recovery. As a policy person, of course I would want people to know how this effort laid the foundation for the passage of MHPAEA and the inclusion of addiction services as essential benefits in the Affordable Care Act. We made history. These laws have laid the foundation we can build on moving forward, and it was made possible in no small way because we set in motion a recovery advocacy movement during that historic 2001 Recovery Summit in St Paul. Obviously, much more work on parity, full implementation remains to be accomplished.

One of those critical moments came in 2007, right after a national recovery month event. Our bill was stuck and we needed to show leadership we were a constituency of consequence. Because we all worked together, we flooded the Speaker Pelosi’s offices with over 10,000 calls asking for movement on our Bill. We shut all the lines down, which created the momentum we needed.  The speaker was behind us, but we needed to show we had the support. As President Truman once said, “I want to help you, but you have to make me do it” and we did! By the end of the day, Wendell Primus called and asked us to stand down and that the message was heard. It worked. It happened because we were able to come together through the framework created out of the vision, we had at that summit in 2001. We now have mandated benefits as a result. There is a long way to go to ensure everyone who needs help gets it. That work continues but it is only possible because we built the foundation to carry the effort forward.

We also helped give voice to people in recovery and helped people communicate about recovery in ways that reduce stigma and normalize recovery. For people who were not around then – understand that at that time, the very act of saying openly that you were a person in recovery from an addiction was a revolutionary act. We normalized it. We have a long way to go, but the work that was done was significant.

I would go back to that last point – people are willing to be open about recovery. Up until then, it simply was not done. Nobody talked about that thing in the middle of so many living rooms across the country. Addiction is common in many of our families across America. When it was talked about it was whispered. When members of Congress or Congressional Staff became aware I was in recovery, they would ask me to stay after a meeting and whisper that they had that thing in their family too, and then they would ask for help. We made recovery audible. We didn’t need to whisper anymore. We became a constituency of consequence in DC, something that is so hard to do but is so easy to lose. That one act of being open has normalized recovery and helped people talk about addiction and recovery in ways that have helped hundreds of thousands of people get help. Thousands of lives have been saved. We never need to whisper, ever again. Can there be a bigger success than that?

Looking back, I think we took unity for granted. History is clear. We have never gotten anywhere without unity of purpose. It is my sense that some of that unity has been lost along the way. We should have focused more on being unified and working out any issues we have as a movement behind closed doors. It is certainly not too late to focus efforts on unity and I think it is vital that we do so. When we are not unified, we get divided up and we all lose. Our pathway forward must be to figure out how to walk together in ways that meet our collective needs. When we fail to do that, we are not taken seriously and all the resources that could save lives and build recovery community flow elsewhere.

That lack of unity I just spoke about is a huge concern. We need to get our focus back. We are that house that cannot stand divided. Elements of this have always been present. We organized the summit in ways that were inclusive of MAT on purpose. We focused on multiple pathways of recovery as our foundation. It was important at that time to recognize and value recovery pathways that were not well understood or widely accepted – like MAT which at the time meant methadone. History needs to show that the 2001 recovery summit was organized to be inclusive of MAT. We have done this; MAT is certainly now seen as a viable and worthy pathway of recovery. In some ways, the pendulum has shifted. I see a lot of open bashing of 12 step recovery and persons who choose abstinence-based pathways. It is destructive to our common purpose and must stop. We focused on multiple pathways to honor all of them. It was then and remains now the right thing to do. Unless we unify around that, we all lose.

People must stop attacking each other publicly, it does immeasurable damage to all of us. We need to build bridges, not burn them! We fight each other while someone else eats our lunch and the resources flow away from us. It may even be true that the seeds of such discontent are sewn by groups who would directly benefit from our disunity. It is a bit ironic that we worked so hard to get money for recovery and very little of it has gotten to the ground. This is in part because of our infighting. The money has largely flowed to other groups because of the open division in the recovery ranks. We must recognize this if we are to carry this movement on to the next generation. I hope this is broadly recognized sooner rather than later.

We need to plan our work and work our plan, together. This means more than chasing the next minuscule grant or stepping on each other for a sliver of pie or personal notoriety. I would ask the next generation to look at what we have done and capitalize on our successes and learn from our mistakes. It is true that because of some of our errors we have lost unity and direction, but it is all fixable! It is not too late. We don’t have to fall into the ash bin of history that so many before us have ended up in when ego and greed become our focus. This will not be our legacy if we all work together!

We have to keep our eye on our common purpose, getting more people access to services that support and sustain recovery. Accomplishing that is not just good for us and our family and friends, but it is also good for America. People in recovery are a huge force for good across the nation. When we come together, we help carry the vision forward of access to what individuals and families need to obtain and sustain recovery. There is no other condition where we see such a turnaround. Addiction is a massive drain on our country’s resources and communities, yet recovery leads to health, productivity and civic engagement. I think many of us want to see this effort picked up and carried forward. A lot of lives are in the balance, and I am hopeful it will happen! It must happen. If you are reading this, we need you. I hope you join us. We can achieve great things together.

We can continue to make history! We must, lives hang in the balance!

Expect a Miracle. Recovery delivers.

Every August, Fellowship Hall hosts a conference to celebrate recovery with hundreds of alumni from our treatment programs and their recovery allies, family members and friends who support their dedication and work to remain in long-term recovery.

This year, Mark D serves as the conference Voice, leading a group of committed volunteers in putting together the program for Conference, setting the theme, and giving their time and talents to pull the event together. This year’s theme, Expect A Miracle, is how Mark describes his recovery experience.

Mark can recall every detail of the moment he had his first drink, down to the color of the cup he used to steal the beverage from his uncle’s fridge at just nine years old. From that moment on, substances would hold a vice grip on his life for decades, until he would reach a point where he had nothing—and no one—left to lose.

As is usually the case, Mark was unaware that he was on his way to rock bottom. After a series of injuries, opiates entered his life – which led to an out-of-control spiral. “I came home one day and the electricity had been shut off,” Mark remembers. It wasn’t long before he had lost everything – his home, his car, his children, and his reality.

Family members attempted an intervention and after a month of avoiding them after the encounter, Mark took his las drink on December 17, 2015. It was after he completed treatment that Mark moved to Greensboro into an Oxford House. He was given the number of a Fellowship Hall alum, Jerry S, who welcomed Mark and took him to meetings for the next two weeks. “I dove in feet first. I loved AA from the very first meeting,” Mark shares.

With the help of his sponsor, Mark began volunteering at Fellowship Hall, driving guests to meetings and looking forward to attending conference each year. One thing he has learned since getting sober is that he expected a miracle, and recovery delivered with a wealth of new friendships, a new lease on life, and gratitude for friends, a home, a job he loves, and the opportunity to help others find the gift of being clean and sober.

Make plans to join us for this year’s conference and come expecting a miracle. The shared experiences and fellowship will strengthen and encourage you in establishing your recovery over the long haul. Register now for this year’s conference, August 6-9, 2021.

About Fellowship Hall

Fellowship Hall is a 99-bed, private, not-for-profit alcohol and drug treatment center located on 120 tranquil acres in Greensboro, N.C. We provide treatment and evidence-based programs built upon the Twelve-Step model of recovery. We have been accredited by The Joint Commission since 1974 as a specialty hospital and are a member of the National Association of Addiction Treatment Providers. We are committed to providing exceptional, compassionate care to every individual we serve.

Eboni Jewel Sears speaks frankly about her sexual maladaptive behavior and how she began to use SMART Recovery several years ago to overcome it. She also became a SMART Recovery facilitator and hosts a weekly meeting on the issue for others in recovery, especially vulnerable teens and young adults.

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Austin posted yesterday about Jon Soske’s piece selecting an addiction/recovery element to keep, one to drop, and one to modify.

The element Jon chose to modify is “medical mistrust.” A couple of sentences exploring this concept really grabbed me.

The pandemic made even more visible the intensity of suspicion regarding health institutions and the medical profession among communities rendered vulnerable and marginalized by structural violence, including people who use drugs.

Jessica Jaiswal is among the scholars of health and race to have described the shortcomings of “medical mistrust” as a concept—one that too often locates root causes in past events rather than in current structures and that lends itself to pathologizing communities by locating mistrust within their “culture.”

I’ve been involved in initiatives to make buprenorphine and naloxone more available in emergency departments and have spoken with a couple of EDs that have been discouraged by the numbers of patients declining buprenorphine prescriptions.

Jon’s comments prompted some reflection on these conversations and patient/provider mismatches in beliefs about the medication and related informed consent issues.

This is anecdotal and second-hand from people involved in implementation at other hospitals, but the medical provider’s perception was that they were offering a highly effective and evidence-based gold standard treatment.

I asked what they knew about their patients’ experience with the medication. They didn’t know much other than the fact that some of them had been prescribed it before and had been non-compliant.

I asked what they knew about their patients’ reasons for declining. They believed that stigma and impaired judgment associated with active addiction were key drivers.

In one of these conversations, I asked, given the provider confidence in the medication and the assumption that stigma is the driver of refusal, how do they view this pattern of behavior in their patients? Would they view this as something akin to a patient with a life-threatening bacterial infection refusing antibiotics? Or a highly vulnerable patient refusing a vaccine because of misinformation? Again, this is second-hand and anecdotal, but she said that probably captured it.

I encouraged them to learn more about their patients’ experience with buprenorphine. I expect they will find that a very large portion of their more chronic and severe patients are experienced with the medication. Some of them will have found it to be a useful tool to help achieve a better quality of life (or recovery), some will have found it to be wholly inadequate, while others have experienced it as part of their addiction rather than a step toward recovery.

Given this mismatch, I suggested that some of their patients may experience their conversations about the medication as overselling its effectiveness and/or proof that they don’t really understand the patient’s experience or goals.

A better understanding of these patients’ experiences, their goals, and how various treatment options (including options not immediately available) interact with those goals and experiences would go a long way toward improving relationships with patients and improving care.

This understanding could lead to improved acceptance rates, improved informed consent, as well as improved care plans. For example:

I’ve long expressed concern about drug policy reform becoming a front in political culture wars. What I didn’t foresee was science becoming a front in political culture wars and, as a result, become an Us vs. Them identity. This has intensified through the course of the pandemic, I’ve worried that the sloganeering around “I believe in science” would intensify institutional & professional suspicion of patients and communities that don’t trust them.

I’d always thought more about this as an important context in the area of policy and what treatments get funded. I’m now much more concerned about these broader cultural contexts entering individual patient encounters with health care providers. In this context, I worry providers are less likely to be genuinely curious about a patient’s “medication hesitancy” and assume it is irrational or tribal anti-science superstition preventing the patient from accepting an obviously and unambiguously good treatment.

So… Jon’s piece observed that “The pandemic made even more visible the intensity of suspicion regarding health institutions and the medical profession”. I’m suggesting that it’s also true that the increased emphasis on slogans like “believe science” have intensified institutional & professional suspicion of patients and communities that don’t trust them.

It has been an exciting week in the recovery space. Most notably, with Jon Soske’s paper on what to keep, drop, and modify in the recovery world. Jon is a friend whom I met through Dr. Schwartz. I was in Providence at the Collaborative Perspectives on Addiction Conference (APA Division 50), filling in for my research partner who could not attend to present our work. Dr. Schwartz asked if he could connect me with a local guy; I agreed, and Jon and I met and had coffee the next day. Jon did not give me much background that first meeting, though we briefly recounted our stories regarding how we came into the recovery space. Jon was very open, inquisitive, and asked many questions about general theories, ideas, and my thoughts on recovery history. Little did I know that Jon would come to play a significant role in my intellectual life (outside of recovery science) and that his influence would shape and modify the very bedrock of my own theories and methods (within recovery science) in the years ahead.

Jon will never tell you (unless you ask), but I feel like I should highlight that Jon is an accomplished intellectual and scholar. Dr. Soske, to be more precise. His expertise involves such topics as decolonial struggles, African American history, and S. African apartheid. Dr. Soske has a Master’s in Comparative Literature and a Doctorate in History. He has authored articles, written and edited books on apartheid, the African National Congress (ANC), and has taught at one of the more prestigious universities. Jon was on sabbatical when I met him, and he was interested in getting involved in the recovery space. I say this not to highlight Jon’s credentials, though they are impressive, I highlight this fact because such personal histories are not uncommon. I’ve met lawyers, (real life) cowboys, accountants, millionaires, former mobsters, football legends, housewives, school teachers, songwriters, tennis trainers, real estate brokers, and even a professional Fooseball coach, all of whom now work in recovery spaces.

In Jon’s case, he brings his past experiences to bear on the recovery field, and in doing so, offers us an opportunity to refocus on our work as a social and political movement seeking emancipation through radical forms of acceptance, democracy, and agape love, that can overcome oppression, criminalization, and intersectionalities that layer and compound stigma, judgment, racism, and marginalization from society.  

Fast forward a couple of years, and Jon is now a front-line advocate, organizer, and peer collaborator, doing daily street-level work while also pursuing scientific, historical, and cultural scholarship on recovery. Despite his humble demeanor and soft-spoken style, Jon is precisely the real deal radical intellectual that has come to define the recovery movement. He joins an army of them. Talk to any street-level harm reductionist whose years of hardcore street experiences have taught them how to theorize on power, the State, and systems of inequity. You will immediately note the incredible political insight and situational awareness. You will also note the thousand-yard stare of someone who works in close proximity to death and carnage that our mechanized systems and society constantly produce as a byproduct. Lived experience, street-level HR, and community-based work forges a unique intellectualism and political savvy that you cannot find in the purely clinical or academic space. Like many of us, Jon exists in multiplicity, hybridized, brilliant, shaped by the forces of genius, trauma, recovery ethos, inexhaustible hope, and deep empathy with the afflicted and oppressed. 

I preface today’s post with this note on Jon quite simply because he represents an essential fact about the recovery movement and something that Tom Hill once taught me: We already have our “experts,” and we already have our history. Our movement overlaps with the histories and struggles of people from across the planet- from LGBTQ Liberation to AIDS activism, from the early 20th-century Progressive Movement, led by the early feminists of the Women’s Rights Movement, to today’s Carceral Abolitionists, the Civil Rights Movement, and the ongoing Indigenous and Decolonial struggles. To say nothing of the Disability Rights and Community Mental Health Movement. Jon is illustrative of a basic fact: we have a history that we are obliged to learn, and we have expertise that can be forged nowhere else but from within our experiences and that of the collective. 

Li Hua, 1946. Title: Take Him In

In short, from within our ranks and through these histories, we can find our truth, ethics, and a set of practices that no sympathetic politician can offer. We can envision a way forward that will not come from insider posts at the ONDCP, or SAMHSA. Instead, we can commit to a way of life defined by alleviating the suffering of others in ways that are impossible to accomplish through monolithic agencies- no matter how many people in recovery are elected to such positions. While we should never stop trying to work the levers of official power, we should not consider such power to be what defines us, nor what should guide us, nor can we wait for such power to recognize what we do. 

Finally, no amount of scientific breakthrough can tell us more than what we already know. The best evidence in the world does nothing when the systems of power refuse to acknowledge it. Nor can objective science be helpful when it is stripped of the very ethos that defines our community, to be made into manuals and medicines to be bought and sold. To echo Jon’s words- recovery does not require a political patron, a moneyed philanthropist, a government champion, scientific legitimation, or sympathetic best-selling authors. We have our own experts, our own history, and therefore, we define our future.          

Jon writes, 

“My colleagues and collaborators understand the sacrifice and dedication of people working at every level of the crisis—from street outreach to departments of health. But none of us believe that any aspect of this macabre pantomime is necessary. We are dying from a callous alloy of racism, cynical indifference, Puritanism, lack of imagination and—most fundamentally—dishonesty. Any community less crippled by shame, fear and criminalization would have started the fires a long time ago.

At a basic level, the structure of this legal impasse distorts the contours of the crisis, obscuring what we are actually dealing with. Significant research identifies stigma as a major impediment—if not the single greatest obstacle—for people seeking help for problematic substance use. At every intersection (institutional, cultural, individual) stigma is interwoven with, works through and is reproduced by racism, neoliberal class and housing structures, for-profit medicine and the criminalization of substance use.

There is no way to model or design interventions to address stigma as it actually functions in this society without addressing the still accelerating “War on Drugs” and these other issues. Indeed, public officials and politicians often euphemistically talk about “stigma” to avoid directly acknowledging and addressing the public health consequences of prohibition. It is not that we should refuse to tackle discrete issues until we have the capacity to transform these systems (we urgently need to make whatever gains we can), but that the state-manufactured deadlock makes it impossible to clearly delineate their attributes and effects. Our social science is hamstrung by ad hoc pseudo-concepts and working fictions. We are wandering between mirages.” 

We are a population that has suffered and continues to suffer under the lash of biopolitical, necropolitical, and psychopolitical forms of power that diffuse into society through capillaries of discipline, surveillance, and juridical institutions that constantly appropriate the language, ideas, interventions, and rationale of the recovery movement; thereby engulfing and subsuming these within the bosom of inherently flawed systems. In doing so, these systems strip the revolutionary potential of care, kinship, solidarity, collaboration, and compassion that are the basis of our life and work in this space. These systems then offer back to us a Justice-Like product, fresh for new markets and consumption. This systemic sleight of hand is the source of rage that you feel when a client dies alone in some dingy bathroom after months of progress under your care.

The systems that define, delimit, and frustrate our work are also the first systems to capitalize on the ingenuity and goodwill of our community. While at the same time, agents of these systems pay lip service in the language of social justice. Therefore, we must heed what Jon has taken the time to illuminate for us: these systems reproduce stigma, oppression, exclusion, and brutality. Even the most cautious and socially aware forms of engagement with the current system will always already further reproduce oppressive power, by legitimating, reifying,. and promoting a flawed system built upon marginalization, profit, and puritanical judgments. What we choose to do with that knowledge is up to us. The reproduction of institutional oppression is well studied and often written about by critical feminists, Indigenous scholars, Black liberation, and political revolutionaries.

Perhaps our intellectual, collaborative, and political futures lay elsewhere, other than trying to work within these systems which resist change at every turn? Well, our first duty then, is to be found in educating ourselves about history, about other struggles, and about the ways power is accumulated, exercised, and embedded within the social matrix of society. It is only then, that we may see a way forward that is not obscured, or confused by the forces that weigh in on us.

If the title does not repulse you, I think there may be something wrong with you. That is the point of this post. The headline is what a medical professional told former Pennsylvania Secretary of the Department of Drug & Alcohol Programs Gary Tennis when he asked the person what should be done with people like me. I know he was told this because he related this story several times when talking about stigma at public events. I am grateful to him for acknowledging how horrific these attitudes are. Acknowledging the truth is the first step to changing it.

As a person who would be so eliminated, it actually hurts my heart to hear that medical professional feel that way about us. I have been thinking about this lately because of yet more efforts here in Pennsylvania to reduce SUD privacy rights under the argument that to do so would improve care. Giving more access of information to people who despise us will not help us. Maybe we should do something about the horrible attitudes within our medical care system before we open up people like me to more discrimination.

If you think my example is an isolated situation, consider this NYT article “Injecting Drugs Can Ruin a Heart. How Many Second Chances Should a User Get?” published on April 29, 2018. The section that has long haunted me is where a physicians describes the “care” to a young man in Tennessee is related:

A little over a year ago, he replaced a heart valve in a 25-year-old man who had injected drugs, only to see him return a few months later. Now two valves, including the new one, were badly infected, and his urine tested positive for illicit drugs. Dr. Pollard declined to operate a second time, and the patient died at a hospice. “It was one of the hardest things I’ve ever had to do,” he said.

The young man was left to die because he did not respond to treatment immediately. They withheld treatment and let him die. That is what I see when I read this. It is so very telling about the brazen nature of the discrimination against us. They don’t even bother hiding it.

I want to be the first to acknowledge that some really great people in our medical care systems are working very hard to change this. I have friends who will read this, and I know they get up every day and work from within the medical care system to improve the perception and show we do get better, and we are actually human. If you are someone who is so engaged, I salute you. You are part of the solution. Unfortunately, I see little evidence that the prevailing negative attitude about us has changed nearly as much as it needs to.

How prevalent are these underlying negative biases against us?  Here is a USA today article about an Ohio politician who tried to pass a law to limit overdose reversals and simply let people die in the street while EMTs stood by with Narcan in hand. If this is what people are saying out loud, what do you think is said when they think no one is listening, or how they act when they think no one is watching?

Still thinking such bias against us is rare? A physician in Oregon wrote this piece about his patients avoiding hospitals because they are drug users and they are afraid that their drug use will mark them as a different class of patient, that their treatment will be worse, and they will suffer. He writes that they are correct. He sees it too. As he notes “It announces itself with, “Well, you did this to yourself.” As if patients with tobacco-ravaged lungs, or with complications from diabetes, or clogged arteries, or broken legs from driving too fast or skiing off trail didn’t also contribute to their own hospitalizations.” This discrimination happens all across America, every single day.

My friend and colleague, Dr. Sean Fogler wrote this piece in STAT News about how stigma is weaponized in our medical care systems. As an openly recovering physician, he would see such things more easily than others. Another recovering physician friend once told me that persons with substance use disorders in their hospital are known as GOMERs (Get Out of My ER). I know more than a few medical professionals in recovery who will not let anyone in their hospitals know they are in recovery because the attitudes about us are abysmal. These are the people we are going to give greater access to our sensitive addiction histories. God help us.

I have experienced such discrimination in medical settings more than a few times. Taking people into the ER for help at 2 AM and being treated like vermin even as the person accompanying them has happened to me more times than I can count. One time I told a dentist treating me that I was in recovery as he was handing me 30 days’ worth of opioids for a dental procedure when an NSAID was a better choice. I told him I did not want an opioid; I took Advil instead. A few days later, I experienced some pain and swelling and set up an appointment to see him. I was worried about infection and went into see him to get ahead of it with an antibiotic in case it was infected. The gentle hand of the professional who treated me the week before was gone. He jammed his hands into my mouth causing more pain, he told me I was fine and informed me I would get no drugs from him. I walked out disgusted and ashamed. 30 years in continuous recovery at the time and I walked out feeling dirty. It still hurts my soul.

The Recovery Research Institute Center for Addiction Medicine and Harvard Medical School conducted this study, “Perceived discrimination in addiction recovery: Assessing the prevalence, nature, and correlates using a novel measure in a U.S. National sample.” It estimates that around 15.2% of people in recovery found it hard to get health insurance because they were in recovery, 14.7% felt like they received inadequate medical treatment, 48.8% reported people assumed they would relapse and 38% held to a higher standard than other people. The mark of stigma is on us.

Thinking about all the lobbying that medical institutions and insurance companies do to get ever more detailed access to our substance use records “so they can better help us.” They usually lobby to align it with HIPAA which allows greater ease for disclosure of illegal drug use to law enforcement than under the SUD privacy rules. Some physicians and nurses are bound to part of the half of the US population mentioned in the study above that assume I relapse, or I am lying to them, and they provide me and people like me substandard treatment. Please realize why many of us do not want the scarlet letter “A” for drug ADDICT written across the front of our medical record by reading this post. Maybe read it a few times.

We keep making it easier to expand access to highly sensitive information. Every case I worked on as a clinician contained detailed drug use history, including family drug use history. I imagine that soon we will see those records show up in criminal cases and divorce proceedings. While recent changes to our privacy rights in the CARES Act now contains extra protections against discrimination, the amendments also permits records to be disclosed pursuant to court order or patient consent for uses in criminal, civil and administrative proceedings. Up until 2020, there was a good reason people could not sign away their rights for their records to be used against them. Now they can. Inevitably, we will see people who are coerced or not properly informed of the gravity of signing away these critical protections.

How exactly do we improve care if medical professionals have such negative views about us and nothing is done to hold them accountable? We should talk about why we are okay with allowing a 25-year-old to die in hospice instead of providing a medical procedure. Do we let diabetics die because they do not follow their diet? Why is it ok refuse care and send a 25-year-old with a substance use disorder to a hospice to die?  It happens fairly regularly simply because we are seen as less than human. Why is there only concern expressed for us when it is associated with reducing our rights to privacy – which serves to protect us against such discrimination is proposed solution instead of fixing the attitudes and aggressively prosecuting discrimination?  

These attitudes are pervasive. It is the proverbial elephant in the room that nobody wants to deal with because these institutions are so powerful, and we are seen as less than human. Let us clean up our medical institutions as step one to reducing stigma. Where are our anti-discrimination laws and what teeth do they have? We need to have a zero-tolerance policies on discriminatory treatment of persons with a substance use disorder written into every hospital policy. They should include strong administrative sanctions for all staff who discriminate against us and everyone who witnesses it and fails to report it. Put such policies in place in every medical institution in the country. Then enforce them.

One in three families experience a substance use disorder. “Those people” are “our people.” We must prosecute discrimination and include compensatory and punitive damages in our laws. We must hold medical care institutions and medical professionals accountable. We must change behavior. We must stop accepting the unacceptable.

Matt Frank has been a SMART facilitator for over seven years.  His uses his experience and LGBTQ+ perspective to shape the tools and conversations to be most effective for his meeting participants. 

In this podcast, Matt talks about:

Additional resources:

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PLEASE NOTE BEFORE YOU COMMENT:

SMART Recovery welcomes comments on our blog posts—we enjoy hearing from you! In the interest of maintaining a respectful and safe community atmosphere, we ask that you adhere to the following guidelines when making or responding to others’ comments, regardless of your point of view. Thank you.

If you are interested in addiction recovery support, we encourage you to visit the SMART Recovery website.

IMPORTANT NOTE:

If you or someone you love is in great distress and considering self-harm, please call 911 for immediate help, or reach out to The National Suicide Prevention Hotline @ 800-273-8255, https://suicidepreventionlifeline.org/

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One of my favorite resources pertaining to the 12 Traditions is the simple list of the “Spiritual Principles in the Twelve Traditions” provided by OA. That simple list can be found here. Many are familiar with the spiritual principles of the Steps, but are not aware that there are spiritual principles identified for the Traditions.

My other favorite resource related to the Traditions is this kind of Tradition Working Guide. Many are familiar with working guides specific to the Steps, but are not aware that there are similar working guides for the Traditions.

Perhaps someone will find this information or these kinds of resources helpful or encouraging.

Shayn confronted use disorders as a youth, but successfully used SMART Recovery to overcome them and thrive, and now also hosts SMART Recovery meetings for teens who need help. Go Shayn! Everyone at SMART Recovery is delighted to work with you and proud of what you are accomplishing!

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PLEASE NOTE BEFORE YOU COMMENT:

SMART Recovery welcomes comments on our blog posts—we enjoy hearing from you! In the interest of maintaining a respectful and safe community atmosphere, we ask that you adhere to the following guidelines when making or responding to others’ comments, regardless of your point of view. Thank you.

If you are interested in addiction recovery support, we encourage you to visit the SMART Recovery website.

IMPORTANT NOTE:

If you or someone you love is in great distress and considering self-harm, please call 911 for immediate help, or reach out to The National Suicide Prevention Hotline @800-273-8255, https://suicidepreventionlifeline.org/

We look forward to you joining the conversation!

*SMART Recovery reserves the right to not publish comments we consider outside our guidelines.*

Yesterday I was sent a report of a “preprint article” about some interesting research results. 

(The report states a preprint article is one that has not yet been peer-reviewed or evaluated and should not be used to guide clinical practice). 

The article reported on a study that asks and answers if there is a “safe level of alcohol consumption for brain health”?

First, the authors summarized the existing state of the literature on this topic by noting that the level of alcohol intake required to cause brain harm is not known – and this was part of the reason they undertook their research project.    

After reviewing brain imaging (functional MRI) data for 25,378 participants the authors found, among other results, that alcohol consumption was associated with reduced grey matter volume and white matter micro-structure. In conclusion the authors state,

No safe dose of alcohol for the brain was found.  Moderate consumption is associated with more widespread adverse effects on the brain than previously recognized…Current ‘low risk’ drinking guidelines should be revisited to take account of brain effects.”

Over the last several years, I’ve taken particular interest in studies that fall under the concept I call “Harms of Use.”  The simple harms of simple use are generally interesting to me. 

One project I undertook on the topic of Harms of Use required gathering and studying a number of research reports on the topic.  That list of references is here. I have already added the research report above to my growing archive of these kinds of studies.

Readers of Recovery Review might recall that in my Stages of Healing series I asked what brain healing should and should not be expected – when particular medications are given. 

Reference

Topiwala,A., Ebmeier, K. P., Maullin-Sapey, T. & Nichols, T. E.  (2021).  No safe level of alcohol consumption for brain health: observational cohort study of 25,378 UK Biobank participants. medRxiv. 10.1101/2021.05.10.21256931

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