I have thus lived in a continuous state of low- to high-level crisis for most of my life. Adequate community care for people with my condition has not yet been developed in this society, and I have not been able to cultivate a personal community that is attuned to and capable of providing for my idiosyncratic needs. Having that kind of access to community care, inherently set up to facilitate meeting your daily needs, is something the privileged, “able-bodied/minded” majority take for granted. Our society does not yet provide people like me with the same access to basic essential resources and community participation that it provides for the majority of people. So I have to independently create a customized and robust social support network for myself, which is not an easy task, especially for someone with social challenges.
But I’m working on it. Over the last few months, I’ve been working on integrating into a new social circle from the local neurodiversity community. A core of us have come together to advocate for our needs in the community and for autistic and disability rights in general, forming the new Washington State chapter of the Autistic Self-Advocacy Network in the process. And this process has also led to forming a wonderful group of dear new friends, who have frames of reference from which we can understand one another’s challenges, gifts, struggles, strengths and value. It’s been a magical feeling, as this community of like-minded people in which I feel like a true equal has started to coalesce. And I’m deeply grateful for the social comfort that this group of friends provides.
And yet, this is a community of people who share common difficulties with functioning in mainstream society. So while it provides me with a sense of community and purpose, this social circle isn’t well equipped to functionally compensate for the lack of resources and assistance we need in our daily lives. For that, I need to be part of a community that has more access to those kinds of resources, and has a cultural tradition of openness to sharing these resources among its members.
Thankfully, the autistic community isn’t the only subculture to which I have inroads. I’ve also identified as polyamorous, for just as long as I’ve known about my autism. Dealing with my disability and my needs as an autistic has required the bulk of my time and energy over the last seven years, with little left over to actively explore polyamory. But after being in a state of prolonged extreme isolation for the last couple of years in order to regain my health, I’ve both recovered sufficient energy to take a swing at it, and developed a profound craving for basic human contact.
A month ago, the urgency of expanding my social circle into the local polyamory community became evident. I realized that I had developed a pattern of spontaneous romantic crushes on people who I was still just getting to know, and that these intense feelings jeopardized the integrity of my fragile local social network, which was still in its infancy. I needed an outlet for this surplus social and emotional energy, a safe place where I could explore this side of myself in an atmosphere of acceptance.
Fortunately, I live in Seattle. When I first moved up here, I was introduced to the Center for Sex-Postive Culture by a sweetie of mine, and now I have the energy to explore this vibrant, active community center where there are opportunities to meet people in the polyamory community (as well as a host of kink-centric subcultures). For the past month, I’ve been actively attending events there, expanding my social circle. It’s been a splendid social outlet for me, and helped me break the rest of the way out of the isolated state in which I’d been keeping myself for so long.
Now, with the addition of these new connections to my existing social circle, I have the beginnings of a support network that maybe, just maybe, could be robust enough and supportive enough to help me meet my basic human needs. My needs are unusual, difficult for others to understand and identify, and chronically undernourished, which has kept me in a continual crisis state for the vast majority of my life. But now, it actually seems possible for me to finally become a truly functional and cared-for member of my community.
My current most urgent need is housing. My rent costs nearly 70% of my monthly income from Social Security Disability, and now that rent is being raised. It was (barely) sustainable for me when I was subsisting in a dormant, convalescent state for the past couple of years, but now that I’m active again, my expenses are greater, and my cognitive resources to functionally manage my finances (one of many extremely difficult tasks for me personally as an autistic) have decreased. Yesterday, I gave my 30-day notice to move out of my current studio apartment. I don’t have a new place lined up yet. But I’m in a situation where I have no other choice. I have to take a leap of faith, hoping I have access to the community resources needed to find a safe place for me to land.
This is all huge, transformational, life-changing stuff. And yet I’m only one of a great many people with disabilities whose access to housing and other basic human needs are only marginally supported, at best, by society. Granted, the broader social situation has been improving for a while, thanks to the Olmstead decision. That Supreme Court ruling back in 1999 required that states provide adequate access to integrated community housing, for those whose needs would be better served in that environment than in an institution. Thanks to that ruling, states have been transitioning massive numbers of unnecessarily institutionalized individuals into healthier community settings, greatly increasing their participation in society.
But now, all that progress is in jeopardy.
Due to state budget cuts to Medicaid, state resources for providing community housing facilities have been reduced, and large numbers of people are now in danger of losing their access to those facilities, if they haven’t already. These people may be forced into medically unnecessary institutionalization. The disability community sued the state for violating the Olmstead decision, and won. But now Gov. Gregoire is considering appealing that decision to the Supreme Court, which would open the possibility of the Olmstead decision being reversed on a national level, turning the clock back on over a decade of substantial progress for our nation’s disability community.
This week, my recently developed local social circle of neurodiverse individuals, the fledgling Washington state chapter of ASAN, is taking point on a massive statewide effort by the disability community to call for Gov. Gregoire to settle this court case and refrain from appealing to the Supreme Court. More details on this budding campaign will be revealed soon, but the upshot is that right now, my community needs me. Sure, my current personal crisis is dramatic and urgent and overwhelming, but part of being a member of a community is looking past all the struggles of my own personal life to do my part to help make sure that society as a whole can provide adequate care for those in need. If I want to build a community in which my basic needs and the needs of people like me can be adequately cared for, then it’s my personal duty to advocate for ensuring access to that kind of necessary community care and housing for everyone.
I’m being called upon by my peers to pitch in, and I’m answering that call. I can devote a week to fighting against the displacement of people with disabilities, fighting for their inclusion in society. Relegating disabled people to institutions where they are isolated and inadequately cared for is a lose-lose situation for everyone in our society. I’ll have the whole rest of the month to find a place to hang my hat. This advocacy effort is more important than my personal situation.
And so I’m calling on you, dear readers, to lift your heads and take a time out from your own personal situations and dramas like I’m doing… not to help me with my own personal crisis, but to help me raise awareness for the potential crisis that Gov. Gregoire is about to create for thousands of others. What I need from you is to pay attention to this situation, to talk about it, and help me generate public discussion about why it’s not okay to unnecessarily institutionalize countless individuals with disabilities, just to cut corners on expenses. This is not an acceptable corner to cut. Everyone needs access to adequate housing and community care, just like I do. Please, help me spread the word about this, and help me drive this discussion toward something that can resonate for society as a whole and compel people to act. I’m doing my best to help out, but I can’t do this alone.
Are you with me?