Harnessing lived experience

By Maureen Steele Consumer participation worker

For many years I worked in the AOD sector in a ‘non-peer’ role. By this I mean the default position for any AOD worker, which is that you do not disclose personal issues or lived experience to your clients/patients. The existence of peer workers, or consumer workers, is a recent development in the AOD sector. These are jobs where it is expected that the employee will have ‘lived experience’ of drug use and be willing to disclose it to some degree.

As a consumer worker, it is not only okay to disclose lived experience, it is expected of you. Mental health services have had consumers on staff for some time, so these services had time to develop a framework for consumer participation, and develop the role of the consumer worker. The AOD field is at the start of this process and it will take some time to establish consumer participation in AOD services. Also, drug use is illegal, which raised some interesting problems for consumer workers in the AOD space, that mental health consumer workers, and people in other ‘identified’ positions do not have to face.

Talking to consumers about your ‘lived’ experience can be a daunting prospect. For example, when is it appropriate to talk about personal issues? The illegal nature of drug taking surely has some bearing on what a consumer worker might disclose, but I am not aware that this a discussion that has occurred broadly. I have established some basic guidelines about personal disclosure, which I will now share, and would love to hear what other people think.

My first reason for disclosing is to establish common ground. I generally talk about being on methadone treatment, or my hepatitis status, rather than divulge my current illicit activity, as I feel a little more nervous about this. Quite simply, I don’t want anyone reporting me to the police if we have a disagreement. Of course, if you describe your drug use in general terms without divulging details such as the name of your dealer or where you score, the police are unlikely to respond, but I think that it is still worth keeping in mind. I have had the experience of clients trying to blackmail me, because they think I am not supposed to be disclosing my lived experience. I had someone threaten to tell my manager once to which I replied, ‘go right ahead!’

Another good reason to disclose drug use or treatment experience is to be a positive role model. I have often heard consumers say, ‘Show me someone who has ever succeeded on methadone!’ As a consumer worker I have said, ‘Well… I don’t know what you mean by “succeed”, but I have been on methadone for 25 years, and I have job and a mortgage…’

But I also understand that describing my life in ‘successful’ terms (that is, I am fulfilling society’s expectations because I have a job, a house, etc.) is unfair to other people who can’t live up to these (mostly stupid) expectations. People need to be allowed to set their own goals and not be held to some standard which they either can’t, or don’t want to, achieve. So, I need to be careful when I talk about my life in terms of ‘success’. I often add these caveats; I am not abstinent, and my drug use can be problematic at times, and I only work part time, because that is all I can manage at this point in my life.

Disclosing lived experience is about connecting with someone. Consumers can find it reassuring to be simply be ‘heard’ by someone who they feel is unlikely to be judge them, or to meet someone who is like them, but appears to be achieving their goals. I think that ‘non-peers’ in health should be also be allowed to talk about their own lived experience if they think that it will be helpful to the client/patient/consumer, and if they want to. Considering the majority of the population has used drugs at some point in their life, I think that it is time that we are honest about this. It doesn’t matter if you have never experienced a drug ‘problem,’ because I think just admitting to having used drugs makes you seem more human from the perspective of the consumer. It has nothing to do with being ‘professional’ or not, but it is simply another technique to get the best outcomes for consumers.

I have heard workers argue that ‘surely people will know I have lived experience through the way I talk and my nonjudgemental attitude’. Unfortunately, I don’t think that this is the case, for many people might not have the skills to pick up your nuanced dialogue. And saying that people will know because of your ‘good attitude’ is surely implying that people without lived experience have bad attitudes? I feel that if AOD workers were able to be more honest about their own experiences, we might find that therapeutic relationships would improve, and that positive outcomes for clients would follow.

Note: In this article, I have used the terms ‘client,’ ‘patient’ and ‘consumer’ interchangeably. The use of these terms, along with ‘peer’ is a discussion for another time.