Self-advocacy involves 1) knowing your needs, 2) communicating your needs, 3) enforcing your needs. I’m highly skilled at the first item. As long people are accommodating of my communication style, I’m not too shabby at the second item either. The third item however can be a big problem because it involves barriers set by people, agencies, and bureaucracy. These barriers can be especially difficult to surmount when the people or agencies have the power to revoke services necessary for survival or quality of life.
Without going into too much personal detail that will likely get me into even deeper trouble, I’ve been trying to get some needs met with one of my service providers. My requests have generated quite a lot of resistance on the part of the provider, despite being (if one is actually reading what I’m asking for not some imaginary thing I didn’t write) within the range of services available to me. This agency currently provides me with some essential components of my long term survival.
So today as my stress levels are peaking far into the danger zone and I’m on the edge of utter panic about still not getting these needs met, I’m simultaneously thinking, don’t say another word, not another email, shhhhh, the agency is already pissed for hearing this needs request too many times, don’t make anything worse, step back, be cautious, do not “rock the boat.”
Eventually someone following the situation pointed out very plainly what was going on, “Stop being scared of the agency; it works for you not the other way around.”
To which I of course responded with an extra dose of panic, “But if I mess up at all and make them any more angry, if I misstep, they will drop me from the program and then–” Panic, oh yes. Panic for the past 24 hours. Keeping-me-awake-at-night panic.
But here’s the thing. I’m afraid to stand up for my rights and my needs because I’m afraid that the people with the power will deny me access to things I need. This sort of power imbalance is a way that, often unintentionally, social service systems themselves disempower and silence self-advocates.
You all probably know what a brat I am by now and how fierce I am about control over my own life. But even I can be brought to cowering and cow-towing to The Powers That Be when I feel like my quality of life is being threatened.
I’m feeling a little better after much crisis management and some deeper thinking. I’ve come to terms with the reality of the risk and have a “plan B” for what to do in the event that my provider did drop me. In this particular situation, I do have options. I’m a little ashamed that I let the provider have that much power over me.
But truly, me feeling better is not the point. The point is that fear of loss of services is a huge (possibly deadly) barrier to the empowerment of self-advocates. Not convinced on the possibly deadly? Recall the recent situation with Minna Mettinen-Kekalainen. Definitely an civil rights area that needs attention.