self-advocacy

It wasn’t until I took the training to become a peer specialist that I heard the term “self-advocacy.” Immediately it terrified me. Being an innately introverted person I had nightmarish visions of having to stand before a group of people and ask for something for myself. In more than 25 years of psychotherapy no one ever challenged me to ask for what I wanted or needed. So, I was terrified.

Terrified because right away I understood that I would have to rely on some deeply held belief that I actually “deserved” what I might be asking for. I wasn’t sure I had that belief yet. So, it became apparent to me pretty quickly that self-advocacy at its root is based on self-love and a belief that we in fact do deserve to get what we need and want to thrive in this world.

This concept is difficult to swallow for many of us who have been diagnosed with a mental illness. One has to keep in mind that from the start of our journey through the psychiatric system we have been told what we need and should want for ourselves. We have been told that a roof over our head, food in our belly and minimal symptoms is what we should be shooting for. I would venture to say that never has a person with a mental health diagnosis gone to a psychiatrist and heard the words “You are an expert on you. What do you want to try?”  From my experience and the experiences of the peers who have confided in me, this scenario just doesn’t exist. So we get used to being told what to do and what our life expectations should be.

If we are fortunate enough to be introduced to the recovery movement then our perspective has a chance to change, grow and mature. From my experience, self-advocacy is a process of getting to know ourselves, what we want and what we need to grow and thrive. It is the process of finding our voice and gathering the courage to use it to further our recovery and the recovery of our peers.

It begins with our families. It begins when we educate our loved ones about what we are dealing with and teach them how to support us in our endeavors. Self-advocacy within the context of our family lives means asserting the role we wish to and are capable of playing in our family dynamic. There is a tendency within even the most supportive families to see support as paternalism. Adults with mental illness are still adults. Therefore as adults, it’s our duty to assert what we can contribute to the family and take an active role in the health and wellness of our families.

Self-advocacy means playing an active role in our treatment with health care providers. It means being intentional in our actions. Too often we allow our doctors and therapists to come up with goals for our treatment plans that are therapeutic. These goals look great on paper and are definitely insurance billable, but have very little to do with how we are actually living. We know what works for ourselves and what we want to accomplish, so why not have that reflected in our treatment plans? I’m not saying it’s easy, but if we are not defining our goals and visions for our recovery then what in the world are we doing? What in the world are we spending our time and money on?

Self-advocacy is about social justice as well. Without fair and equitable laws that protect our rights we find ourselves in abject poverty, living in substandard housing, being abused by predators, and being disregarded by the psychiatric community. Self-advocacy means joining your voice with the voices of your peers to stop forced seclusion, ECT, and restraints in hospitals. It means demanding equal and fair treatment when seeking safe and affordable housing. Self-advocacy means using your voice to stop discrimination in employment. It means holding our institutions and our society accountable for the treatment we receive in all areas of our life. It means fighting stigma.

Not everyone is going to be at the top of their game in all areas of self-advocacy. But there is a role for us to play. We can all do our part in whatever area we choose.   

what's in a name?

Mental challenge or not, when you reach a certain age you start to wonder what your life would be like had you made different choices. At least that is the age I have reached. I wonder what my life would be like if I had said yes to marriage or chosen not to further my education or if I had chosen to stay in my hometown. As a Catholic I wonder what kind of choices I would have made if I had been raised in the church instead of taking a very winding road to Catholicism.

I wonder quite a bit about my health. What if I had known that my paternal grandmother struggled with paranoid schizophrenia like I knew my maternal great aunt had gone blind? Would I have sought out treatment when I began to hear things that others couldn’t hear? Would I have questioned my dark days as depression instead of chalking it up to being a moody cancer? Would I have denied myself the support of the clinical and peer communities for so long?

Technically, I think I’m considered to be over the hill and these are things I wonder about. There are no regrets in my wondering, just curiosity. Everything I have done up to this point has led me to this life. I love this life. I love being a peer specialist. It’s like being a teacher of sorts. I get to teach people from diverse backgrounds how to take stock of themselves to work with what they’ve got to get to where they want to be. I get to meet them wherever they are in their journey; discover with them where they want to move forward to and help them see what they already have inside them that will get them there.

It is an act of service that inspires me to move forward in my own journey. To be honest, it’s not always sunshine and lollipops though. Sometimes it’s really difficult. It’s not difficult because of the individuals I work with. They move at their own pace, at their own rhythm and get there-wherever there is for them-in their own time. It’s difficult sometimes because of the many movements occurring simultaneously.

I have my feet in so many worlds, all striving for the same thing-social justice. All of these movements want to see individuals of all walks of life get a fair shake. They want to see institutionalized “isms” eradicated and they want all people to have opportunities to live a life of their choosing. The challenge is in the language. There is no common language and the terminology we are throwing around seems to change like the seasons. It’s hard to keep up.

One group asserts that if a person is struggling with an altered perception of themselves or the world then they have a mental illness. Another group says, no, there’s no such thing as mental illness; there is only mental differences. And everyone is do touchy about how we refer to ourselves and others. Am I a peer, a patient, a person, a client, an individual, a consumer, and so on.  I have personally observed individuals from different groups who have fundamentally the same agendas walk away from discussions over a lack of a common language. It’s as if we have been traumatized by the words traditionally used to describe us and our extraordinary experiences. But what we fail to remember is that language only limits us if we allow it to. It’s a personal decision to remain within the boundaries of a label.

So, someone like me, who doesn’t care about language as long as it is coming from a place of mutual respect gets relegated to the kids table. I say let individuals decide what language works for them. I’m not offended when my psych doctor refers to me as a client or patient or consumer because that’s how he sees me. That’s not how I see myself. His language doesn’t begin to describe all that I am, all that I’ve overcome or all that I will accomplish. I really think we all just need to take a step back and get over ourselves. Why not spend that energy on what’s important, namely, the overall treatment of people struggling to get or regain control over their lives.

After all, most individuals are probably asking themselves the same questions I’m asking. “What if I had done things differently?” “What can I do now to effect change in my life?” “What do I need to do to get where I want to be?” Let’s be radical and focus on helping them find those answers instead of alienating one another with language. Let’s not get so invested in our camp that we miss the mark. How about we try to avoid the mistakes that have been made in the past by our “do-gooder” ancestors and maintain a curious mind. Let’s assume the best of one another regardless of the language we use and be about the business of empowering one another to live our best possible lives.