Almost everyone I have come into contact with that has access to the internet and has a mental illness (with current research, I am not sure how much longer that label will be around) calls themselves an advocate. I frequently call myself an advocate as well but will do so less and less.
Calling yourself an advocate makes it appear to people, not that you have the experience of one person, but that you are an expert or authority on one of those illnesses. Most of the advocates that I have met don’t even bother to keep up with laws, trends, research, etc. that have to do with the illness where they are viewed or seen as an expert or authority.
I will give you an example of advocacy that I think harms the larger community of people living with a brain illness. The disability community has long preferred people first language to refer to people with an illness so, a person would say, I have diabetes, not, I am diabetic, or I have cancer, not I am cancer, or I have schizophrenia, not, I am schizophrenic. Using this word may seem like a small issue to someone who is an “advocate,” and they may decide they don’t care about that issue at all and scream from every platform they can find, “I am schizophrenic! I am schizophrenic! I am schizophrenic!”
It is great that they don’t think this is a big deal. But view it like vaccinations. Many of us don’t get vaccinations to prevent ourselves from getting an illness we get vaccinations to prevent giving the illness to someone who is far more vulnerable than us. It is the cost, the dues, the responsibility of living in a community. We take care of the most vulnerable among us.
I will say that for many people being called a schizophrenic is harmful. People who call other people that are making that the key source of their identity, not allowing them to first be, writer, teacher, fireman, lawyer, wife, husband, son, father, mother, sister, brother, etc. We all have so many identities that we would prefer to be known for rather than the one that is seen as broken, or ill.
I think it is a matter of privilege that people can say the word schizophrenic doesn’t bother them. It means that being dehumanized and identified as an illness has no bearing on their lives and their happiness and their success. I challenge the people who think this way. I think “advocates” who think this way are unwilling to admit that there is a huge divide in the mental health community.
There are those with the privilege of having clear enough thoughts and the means to write on the internet every day, and there are those, living in the streets, in prison, those at risk of being shot by police, and those without access to treatment. Those people can’t afford to be demeaned anymore than they already are. Seeing them as a brother, mother, father, sister, is critical to their survival and seeing them as someone who is schizophrenic is harmful because let’s face it, people still believe people with schizophrenia are less than, not quite human, and in some cases capable of monstrosities.
In my world, until all the mentally ill are cared for, and treated with dignity, then none of us are free to claim that some issues that demean others are of no harm. It is our responsibility to stand up, and if we are going to call ourselves advocates, let’s get to it – people are dying.