One of the things that bothers me about the provider and Family side of advocacy, particularly in the mental health field, is how much stability is touted as a need before a consumer or survivor can be involved in advocacy. Even the OMHSAS advisory says you should be stable before participating in the advisory that makes the policy recommendations. As if the system is somehow going to change enough for you to get what you need without you telling them just how very broken it all is.
In fact it’s become fairly routine to only listen to those who are no longer “dangerous,” (more like no longer in danger…) no longer in need. This extends to funding choices, too. Many of us with SMI (Serious Mental Illness- though I hate using the I) end up with- if we didn’t start out with- serious class, financial, and educational disadvantages.
When funding for “consumer” involvement support (transport, housing for long meetings, for some even lunch) gets cut, it effectively excudes those of us who are in the most need of being heard. This is doubly true in state level advocacy in a large state. In PA, for me to go to Harrisburg it’s a 4 hour direct drive. But I, like a number of others, don’t drive. I want to, but I don’t yet. So I have to get down to Pittsburgh and take public transit from there- about 6-8 hours. When the meeting is at 8 or 10 am, this makes it effectively impossible for someone in my own circumstances to get there- better than mine, actually, because I personally couldn’t afford the bus ticket.
I technically don’t even fit their definition of “stable” right now. While it’s been several years since I’ve been hospitalized, I have been depressed. I have had meltdowns. I do have frequent panic attacks over fairly inconsequential things. The thing is, though, that they can’t tell unless I bring it up. They don’t realize how dire a situation it is for me to have my accommodations met, or how I have to let my brain go numb on the way home to keep from being terrified and shaking. And if they did they would not understand why I keep doing it, would tout self-care and so forth.
Truth is, I keep doing it because of all this.