Ph.D., Creator, RECOVERYlibrary.com and CommonGround

Patricia E. Deegan is a principal with Pat Deegan & Associates, LLC. She is a thought leader and disruptive innovator in the field of behavioral health recovery. Creator of RECOVERYLibrary.com and the CommonGround web applications. Pat is an activist in the disability rights movement and has lived her own journey of recovery after being diagnosed with schizophrenia as a teenager. She is an Adjunct Professor at Dartmouth College Geisel School of Medicine and at Boston University, Sargent College of Health and Rehabilitation Sciences. She received her doctorate in clinical psychology from Duquesne University.

Peer Staff: Disruptive Innovators

This is an important moment in history.

So began Dr. Pat Deegan’s inaugural keynote address to the first National Conference on Peer Support held in Halifax April 30 to May 2, 2014. Pat was introduced as someone who knows her stuff; it’s a powerful combination of lived and professional experience which tells a story that captivated the sell-out audience for well over an hour. Like many young people on the brink of adulthood, Pat’s journey began at 17 when she was first diagnosed with schizophrenia. From this point on, she was told that a life of inactivity devoid of hope was all that she could aspire to. Gone was her dream to become a lacrosse coach which was now replaced as she describes by life on the couch.

There was no reason for her to assume things could be any different. She recounted how follow up visits were all about med checks and instructions to avoid stress. At the time the prevailing wisdom was to take high dose meds which in itself created problematic side effects. Without any advice to the contrary or a peer role model, she thought that it was the only life she could have. As a result, she had no way to see a vision of who she could become – in essence, the future was now blocked. She recounted how day after day of doing nothing; led to despair more crushing than the disease. Her only experience of mental illness was Jack Nicholson in One Flew Over the Cuckoo’s Nest, and that was in her words, just plain scary. She wonders now how it might have been different if there had been a peer at the time who could have told her that that it is possible to get a life.

Now years later, Pat would like to see the Good News of peer support shared globally but unfortunately, it’s still not the case yet. In her opinion the treatment formula is for many a spirit-crushing and soul numbing experience with an inappropriate emphasis on medication, manners and money. She believes that we can do much better to raise the bar for recovery; for all. Not just the super heroes because it’s not always possible to predict who will do well. The results are often surprising because, given an opportunity, the individual will find their own way to a life for themselves. We, in this room, are the evidence of that! Although Pat is quick to point out that medication does have its place, she notes that it also has its drawbacks including; over-sedation, weight gain and predisposition to other health issues especially cardiac. All in all, this means that people are put at risk to die young from otherwise preventable diseases. She questions how we can risk the waste of dedicating resources to recovery and then having the person die young.

Pat also wanted to share that her experience has not been all bad but over time it really took its toll on her personal dignity. In fact, she notes that the word, mortification might be a better word to describe the effect of being treated as a schizophrenic rather than a person. All in all, the experience resulted in an angry indignation that fueled a profound inspiration within her and a vow to change established treatment practices.

You’re wrong about me. You lack understanding of my resilience.

Her motivation was that no one else would have to live through this hurt again. With this in mind, she began to organize a new life for herself. She realizes in retrospect that this action was a big part of the healing process. In fact, as she sees it, the true essence of recovery means living our lives not our diagnosis. Science has now proven also that your life experience in itself will actually change your biochemistry – and this makes for powerful medicine. All in all, she believes that wellness is a result of finding that delicate balance between medication choices and lifestyle for each individual. Pat is living proof that big dreams often start with very small steps. She credits her grandmother for helping her to take the first move to her recovery. She recounted how day in and day out Granny would come into the smoky living room and ask Pat if she would like to come shopping. Finally, one day Pat agreed to go and in her own words told us that, her recovery began by pushing the cart down the A &P aisle in her hometown.

Pat’s professional career got its start in Cape Cod where she was appointed as the clinical director of Family Services. Not only did she think that she had all the answers; she was ready to singlehandedly take on the mental health system. But still, she kept quiet about her illness. A situation by her description that was akin to staying in the closet. She realized that with a history such as hers which fell somewhere between being a clinician and patient it was actually a very scary time. It is this experience that has given her a profound respect for workers in mental health who go back there.

It truly is a profound act of love and courage – to help bring others to recovery. It’s not easy and others may not understand the sacrifice that is required. After a few years on the job, Pat felt that she hadn’t made much effect so far, in effect, somuch for changing the system! It took a couple of years for her to realize that what was really happening was that the system was changing her. She began to question her initial strategy of trying to help people without letting on about who she really was. As well, she was finding it increasingly difficult to keep her secret. In her status quo there was nothing that set her work apart. In effect, she had become assimilated. All of that changed on the day when she decided to share her story.

Those of us who are diagnosed . . ., can recover. We are an extended family of people in recovery. The answers are really with the people we come to serve and together we recover.

She also realized at that time that although she did not have the power to save people, she could have an impact. Through her experience Pat has come to learn that it’s not a sole job, but that recovery is achieved in partnership. As part of the recovery community, wounded healers are compassionate human beings who have an extraordinary strength. We need more of these people to enter the workforce as peer supporters. Our work is unique – and the point is how not to be assimilated. We don’t want to lose our roots as peers – we want to work alongside other professionals in the health care community.

Pat believes that peer support is most effective when, we become disruptive innovators. People who position themselves at the intersection of love and outrage as we advocate for the peers we support. To be totally comfortable is not a good thing – we must feel the tension between love and outrage or we are losing our way. In her mind, this fundamental tension is not a bad thing; to know outrage will ground you in the work. Outrage and activism – comes naturally to those who have been in the mental health system. They have years of lived experience of giving love for free, and outrage at the neglect and disrespect that they have seen around them. Now we go to work as peer staff – we must carry outrage and love and we must find ways to channel it to become fierce advocates for peers.

Of course, Pat cautioned, we need to find the fine line of being effective but not to the point of getting fired! Peer supporters are a welcome resource to mental health work BUT at the same time this role is creating tensions. Organizations are challenged about how to accept this new workforce on it’s own terms. So her perspective is that we go to work to disrupt the traditional mental health culture and not the work.

It’s a new frontier and in order that we continue to make progress, she recommends that peer supporters remember these 5 things.

  1. We are the evidence that recovery is real. We raise the bar on what outcomes could really be with effort and inputs. No longer is it acceptable to believe that mental health conditions are chronic with no recovery. This paradigm is a challenge to old theories.
  2. We blur the boundary between health and sickness. Peer supporters are walking in two worlds; the kingdom of the well and kingdom of the unwell. Colleagues are uncomfortable with this crossing over. Previously this divide was enforced by behaviour and dress code. It makes them worry about their own health.
  3. We can help each other. Participants in the conventional system feel that peer support workers are competing for other’s jobs. In fact, the peer support role is very complementary to other elements of the peer’s treatment.
  4. We have the right to exercise our rights. We operate through the lens of patient and rights not just clinical theory. It is not always so well received when peer support workers educate peers on their rights.
  5. We create role strain. We reinforce that we are all in the recovery role but, the current culture is not quite ready to change. Sue et al., 2007, have described how cultures that resist transformation may potentially lead to environments that are characterized by acts of micro- aggression. These are defined as brief and commonplace daily verbal, behavioural, and environmental indignities, whether intentional or not that serve to communicate hostility, derogatory or negative social slights to the target person in the group.

We know that these attitudes can wear you down after a while because it feels like you don’t belong. We also know that these situations can be hard to address because when it is done with a smile it’s easy for people to say that you are over reacting if you take offense.

We need to stop apologizing for not having THE credentials and walk taller in the workplace.

One issue that seems to crop up fairly often is where peer support workers are told to stop personalizing the issue. It is a common tension. This creates an obvious dilemma because peer support workers are hired for their values but are then told not to speak from them. Pat advised that there is a way to address these tensions that will help bring resolution to difficult issues.

  • Don’t do it alone
  • Validate and name micro-aggression or it will be crazy making
  • Approach as a systematic issue and not personal
  • Encourage the agency to take a wide initiative to practice respect/respect for differences
  • Supervision is key
  • One foot in our movement

She cautions that if micro-aggression is dealt with a heavy hand then she fears that the people/systems responsible will just go underground and be harder to reach.

In closing, Pat identified the need to for us to work through the feeling that we are just peer supporters. We should be really encouraged by the plan to identify the core competencies that will define our contribution to the field. This will help to bring greater credibility and acceptance of our work. In fact, we as members of the mental health community have a lot more common than not. It makes good sense to build coalitions which ultimately will bring the best medicine to us all. Take, for example, the story of Jean Baptiste Pussin (1746-1811), a former mental patient turned asylum superintendent who advocated that the chains be removed from the mental patients at his facility. It was his belief that putting people to work was the best possible therapy – as true then as it is now.

So, we stand on the shoulders of giants. Give people the keys so that they can free themselves.

Patricia Deegan’s keynote address at 9:00am, Wednesday, April 30th, 2014. National Conference on Peer Support, 2014.