The bulk of this post was taken from a piece of my upcoming memoir I’ve left on the cutting room floor.
It’s like 12-step programs say, “the first step to recovery is admitting you have a problem.”
So just getting people to understand that people with disabilities exist and admit that there are multiple, severe problems with the systems we rely on to survive—to the point we cannot survive in too many cases—just getting that understanding is a major hurdle. There’s this widespread false belief that people like me are “taken care of” and don’t need community help and involvement, when we do more than ever! The institutional bias is a huge problem. Austerity is a huge problem. I need people involved, I need volunteers, and the need for assistance and advocacy that I and the disability community as a whole NEED is only increasing as austerity budgets reduce the government support we’re receiving.
We, the grassroots activists, must educate the state governors and Medicaid commissioners who are running the programs and the legislators who are supposed to oversee them as to the real problems; it’s a bizarre psychedelic upside down situation where the insiders have little knowledge of the most egregious unintended consequences their programs create. We have fallen through the looking glass, and the captains don’t notice that their ships have holes in them. The few grassroots activists who see and come to understand how Medicaid programs in their state really work after they’re been through the special interest gauntlet and legislative sausage machine end up feeling like Cassandra, the Greek mythological prophetess who predicted doom and destruction and a Trojan horse was coming, was disbelieved, and was right. It’s hard to be the one person interrupting the party to point out the horrible truths.
The captains insist their hole-y fleet is just fine; “we’re not taking on water, and wouldn’t you be better off thinking positive and being grateful for what we have?” When optimism is preached by “see no evil, hear no evil” wind-up monkey leadership, it can actually be quite harmful. Sometimes politicians and CEOs employ an almost Maoist forced optimism to squelch the legitimate grievances of individuals. In the first few months of my campaign, Nick’s Crusade, the majority of the signs were discouraging. I wasn’t even sure that I could convince people that there was a problem. I kept going because I couldn’t do otherwise.
In this lecture, Barbara Ehrenreich talks about this forced optimism, its use as a tool of social control in authoritarian societies, its destructive consequences.