More from Pat Deegan

When Help is Not Helpful

Help, and in particular toxic help, is not a topic that is discussed often in professional rehabilitation cultures. The nature of help is one of those topics about which we are often silent because we are too busy being helpful to stop to talk about it. But we must break that taboo. We must dare to talk about help because power, including the power to oppress, often disguises itself as help. Power-disguised-as-help is used to silence disabled people. Paolo Freire (1989) says that oppressive power submerges the consciousness of the oppressed into a culture of silence. Toxic help oppresses and silences people with disabilities.

Help isn’t help if it’s not helpful. Help that is not helpful can actually do harm. Being helpful requires that professionals ask us what we need. But asking is never enough. Professionals must also listen to what we say. In this way help becomes something that is co-created between the disabled person and the professional. When help is co-created as an explicit agreement between the professional and the individual, then silencing is avoided.

In my opinion, one of the best methods for amplifying the voice and values of those of us who are disabled is the shared decision making process. In this process, the clinician and service user come to agreement on *what the service need is, what the course of rehabilitation will be, what the desired outcomes of services are and what the respective responsibilities of each party will be in achieving those outcomes. It seems to me that the shared decision process is more than a method. It is an ethical obligation that makes explicit the power of the professional and brings it into alignment with the voice and directives of the disabled person.


[note: “Mentalism refers to the oppression of people who have been diagnosed with psychiatric disorders.”]

Peer practitioners may encounter mentalism in all its forms when on the job. In its most obvious form, mentalism is a macro-aggression. A macro-aggression is obvious and easily identified by all who witness it as unfair, biased and/or discriminatory. An example of a mentalist macro-aggression is an emergency room automatically placing people with psychiatric diagnoses in restraints while waiting to be seen by a physician or having only clients (not staff) go through a metal detector at a local mental health center.

Another form that mentalism can take is called micro-aggression. Micro-aggressions are more subtle, not as obvious and therefore are harder to point out or confront. Mentalist micro-aggressions occur frequently and have a tendency to wear us down over time. Micro-aggressions tend to be “invisible” and we often experience the cumulative effect of them as tension between ourselves….

Most peer practitioners will encounter micro-aggressions on the job. How should staff handle these types of experiences and still remain within the role of the peer practitioner? The answer is that first peer practitioners must be able to identify micro-aggression when it happens. This requires consciousness raising and a supportive group of peer practitioners who can help us name mentalism when it is happening. Secondly, peer practitioners must support and validate for each other, the reality of mentalist micro-aggression when it is reported by a co-worker. Third, peer practitioners must learn to strategically respond to those people or policies that are oppressive, whether it was intentional or not.

Healing Relationships

Relationships are the cornerstone of the recovery process for most people. Relationships that are marked by kindness and compassion can heal. … In a culture steeped in the belief that there is a “pill for every ill”, it can be important to remind ourselves of the healing power of human relationships.

The people I have interviewed mention certain important characteristics of people who were experienced as helpful in their recovery. Many said the helpful person showed fortitude, patience and love. For instance, John said:

“Relationships helped me. Patience. Sticking by you regardless. Like my wife. Sticking by you through thick and thin. Constant support. Constant encouragement from the outside. That’s what I think a person needs the most. And love.”

Fidelity, patience and fortitude are evident when the helpful person is present during the most difficult of times and does not simply come around when recovery seems promising. People who are experienced as helpful are able to hold the relationship during times when the other does not reciprocate affection and care. This holding of love and relationship, even during the most barren and anguished winter of recovery, requires compassion. The word compassion comes from the Latin passio, to suffer and com, to be with. To be compassionate is to suffer with the person in distress. To be compassionate is a way of being with the other without an agenda to change them, to relieve their suffering or to suffer for them. Through compassion we can reach out to the other even when they refuse to reach back. With compassion we see the person, not the diagnosis or disorder….

Another characteristic of people who are helpful to the recovery process is that they believe in the person in distress, even when that person does not believe in themselves. Believing in the other is not expressed in optimistic rhetoric such as, “I just know that in time you will do better.” Shallow optimism ignores the challenges and difficulties that the person in distress faces. Optimism may help us feel better, but it leaves the other alone and distanced. Believing in someone, on the other hand, takes the form of a fundamental affirmation of that person’s goodness. It is a hopeful stance that admits the the future is uncertain and ambiguous while simultaneously expressing a willingness to walk together into that unknown future….

People who are helpful to the recovery process are able to convey feelings and are experienced as being very human. No one reported that professional distance and demeanor were helpful. Instead, our own humanity is the bridge that connects us to people in distress. Sometimes humor can form a connection of warmth, joy and affection….

Relationship includes the idea of mutuality and reciprocity. This can be very healing for people who have been in the patient or client role for a long time. That is, being socialized into the role of a “good” mental patient often means learning to become preoccupied with matters pertaining to “me”. Socialization into self-preoccupation starts in the hospital where each day begins with a nurse asking you if your bowels are moving, if you slept that night, etc. Socialization into me-ness proceeds on through the years as each and every casemanager, therapist, residential worker or vocational rehabilitation counselor asks, “How are you doing?” Unlike normal social discourse in which ‘how are you doing’ acts as a perfunctory greeting, mental health discourse requires the client to take the question seriously and to answer by revealing more about “me”. In addition, in most mental health settings, clients are not encouraged to help each other or anyone else. In this sense, the currently popular term “consumer” seems apt. It conjures the image of a large mouth consuming and consuming without a hint that it would be possible to contribute something back.

Socialization into me-ness, self-preoccupation and being a consumer means that many people are denied the opportunity to discover they have something to offer to other people. This iatrogenic wounding is another reason relationships can be so healing. It is healing to learn
that one needs and is needed, cares and is cared for, and can receive as well as give.