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I attended the Association of Writers and Writing Programs (AWP) conference last week.

What I found at the writer’s conference was that I was very much alone in my diagnosis. I didn’t meet another person with schizophrenia. It is possible that other people living with the illness were there, but not open about their diagnosis. It is possible I didn’t go to the right place at the right time.

I think even if there were other people there who have schizophrenia, it is fair to say; our numbers were very small. And that leads me to responsibility and privilege. There are millions of people living in the United States with schizophrenia, but the majority of them are either living in hiding (fear of losing their jobs or being discriminated against), or they are living on disability checks, in prison, or on the streets.

The reality for most people with schizophrenia is that a writing conference is cost prohibitive. A disability check would never cover the cost of hotels and food or the possible need for an airline ticket.

What does that mean to me, the fact that most people with schizophrenia are under-represented at writer’s conferences? It means that I have the responsibility to speak up about our lives, our illness, and our treatment. When a person meets me, it may be the first time they have ever knowingly met someone with schizophrenia.

I can talk about the issues that plague our community – lack of mental health (treatment), the high cost of medication, the high cost of care, incarceration, housing, stigma, discrimination, stereotypes.

In the mental health community, there are many people with schizophrenia who are writing. I read their articles and blog posts often. In the mainstream media, there seems to be only a handful of writers who live with schizophrenia (at least openly). I don’t know if it is because editors are not interested in the pieces of writing from the community of people who have schizophrenia, or if we are not submitting our articles to the places that are interested in our  stories.

What am I saying? If you have schizophrenia, and you show up some place and represent our community, it matters. It matters a lot. You may be representing hundreds if not thousands of people. You may be able to change a heart or a mind, and that changes a small world, and small worlds join the bigger world, and you begin to have an echo that goes out over the hills and valleys – an echo that can influence equality and justice, stigma, and stereotypes.

I was alone in a crowd, but I knew all of you were there with me. I’m with you, too. We need to be seen and heard. We need to join forces and show up. We can change those small worlds and create those echoes. We can do it for each other. If we carry each other’s burdens, we are never really alone.

(It was a good conference, and diversity issues seem to be a priority, but I wish our presence (those of us with schizophrenia) were better represented – in other words, I missed seeing you there).