Action without an idea is a nightmare." -google it.
As mentioned, after getting in over my head in matters of "community," marriage, and home ownership, on top of parenting, working, and being silly me..
There has been light at the end of the tunnel. The key to this was recognizing that I had options. Even when it didn't seem like it, I held onto to the alanon principle that we always have options.
When the capitalist bought our house, we soon found ourselves needing to move. We found a house nearby which fit our needs and rent was reasonable. It turns out that we are probably better off at the new house than we would have been at the old house for a lot of reasons. But this isn't the light I was talking about earlier.
When I first decided to move to Cincinnati, I had thought I was moving to a community that "got it," because in this community, Ken didn't need support services from the state. I was impressed with this and wanted to be a part of it. As soon as I married him, the only thing the community got was that the help Ken needed would now come from me. I don't think I will ever get over this, and the experience has completely divorced me from church in any way, shape, or form. I count this as a blessing.
When the support Ken had before I married him evaporated, it took me a long time to figure things out. It was a process, and by the end we knew we needed to chuck the idea that the "church" was responsible toward us, and to ask for the help we need from the state.
Now two of the assistants Ken has started receiving help from are from Ghana. They have come so far from home and they "get it." What they get is that Ken deserves to have the same things in life that everyone else does, and that he and his family deserve a little help to make it all happen. They don't see themselves as saints, and they don't see themselves as doing us any great favors.
That attitude in itself is a great favor. They are the light at the end of this dark tunnel.
(PS. This blog will be closing down in a few short weeks. I'm gleaning from my archives and the rest of this dross will disappear!)
posted by Laura 12:10 PM
Thursday, December 10, 2009
Marriage and Disability
Not much time, but I want to convey a few things. Ken and I married in 2005. Here is a bit of what we found.
He and I were both losers on social security when we met. You will try and argue with the loser part, but I'm going with the bias of this society. When you're on social security you feel the shame in your bones, every day. One of the first things we did was to check with social security to see how marriage would affect our economic security.
Mine was a survivor's benefit. I would stop getting it, but my kids' benefit would continue. Not so bad. The assumption here: marriage improved my economic condition.
Ken's was a disability benefit plus medicare and medicaid. He would stop getting all of it. The assumption: if you're good enough to marry you must be earning a living, or you've found someone to take care of you.
I've heard men rightfully complain about women trying to hook up with them for security, and to get onto the man's health insurance. I've heard of women rightfully complain of the men who are freeloading off of them. Keeps the gossip circles going. All that is legit, (except the gossip.) But what I'd like for you to consider here is what happens when someone marries the one that they love regardless of lack of benefits. Makes a strong case for choosing a mate on the basis of security, doesn't it? Who's gossipping about this outrage? And to me, the outrage is this: this system discriminates against people with disability by making it economically unfeasible for them to marry anyone.
Okay, I lied to you. Ken and I did not get married, not legally anyway. Hopefully you see why. A struggling, single parent raising two kids does not take on an adult dependent. The last thing a man wants, disabled or not, is to give up what little autonomy he has and become solely dependent on a wife. (Not to mention the havoc extreme dependency can wreak in a marriage.)
I would think this stuff would be common knowledge, but I have found that the ignorance of the state is just the tip of the iceberg. I did say I am giving up blame for Lent, starting in Advent, so I will try to convey this in a benign manner.
The best way to say this without blaming is to admit and when Ken and I got together, we both had a traditional setup in mind. (As did everybody.) And what is that? I was going to take on the wife's role. We all know what that is. A-Z caretaking. Traditionally husbands have a role also, and when you have an obvious disability, you're expected to do..what you can. (I could claim disability on the basis of chronic insonmia, but face it: I look fine on the outside, ie. no disability.)
Okay, I lied again, sort of. I knew I could not do this. I knew I would need help in order to function in a family with two dependent children and a spouse with a disability, not to mention my own issues (including chronic insomnia.) I communicated this to his then support system, and it was communicated back to me in a variety of ways (that I will not get into) that this support system would remain. For a variety of reasons it did not, but the number one reason is because of the assumptions we all make about marriage.
There is a light at the end of this dark tunnel, if now you even percieve the tunnel we are in. That is what I will hopefully blog about next!
I am thinking about blogging a series of short posts about things that have been on my mind lately. This first one concerns something that people have told me from time to time: that I have a gift with people with disabilities. Some people tend to view this as "my thing" like others might be into skiing, or animals, or gardening.
To get to my point quickly, let me suggest we replace this with another demographic. How about black people. "You have a real gift with black people. I just don't know what to do when I am around them." How does that go over?
Once at church someone who uses a wheelchair started coming. Immediately some people started looking for Ken and me so that we could get together with this other person. Let's try this on another demographic. "Hey Raul! There is a gay visitor this morning! I hope we can get the two of you together! Isn't this special!"
Okay, so I have to admit that in thinking about this, I was thinking of how my daughter has a bit of a gift with children. And frankly, at this point with my children in high school and beyond, children aren't really my thing. But children aren't necessarily an oppressed demographic as a whole, held down by the mores of our society. Gays and blacks and people with disabilities are. I will be posting much more on disability and oppression later.
So what do I want to say to people who tell me I have a gift in what I have chosen in both work and my personal life? First of all, thank you. Like Emilie does with children, I do sort of have an affinity for supporting and understanding some people with disabilities. I will also confess that sometimes when I encounter certain individuals with whom I am not familiar, I am fearful, and my tendency is to not want to expend the energy to learn about this person and how they relate or communicate.
I want to stress that my so-called gift does not absolve others of their responsibility to be aware of things that are oppressive in our culture for people with disabilities, and the first of those oppressions is that most people do not recognize that this oppression exists. I do not believe that the Episcopal church has a gift for their embracing people who are gay and lesbian. This is social justice and it's not a favor, it's only right. I do not believe that President Obama's mother had a gift because she had a black partner and raised a black child. This idea would be ludicrous!
By saying people who work with people with disabilities have some kind of gift, people deny the humanity and dignity of that entire demographic. Saying you really admire me, but it's just not your thing... this is oppressive.
posted by Laura 3:07 PM
Wednesday, September 09, 2009
Spiritually Speaking
I am surprised at the church. I am confused by the church. I rack my brain trying to understand the church. I used to take the church personally--the way it would smile congenially and then shut me out, how it welcomed all yet made a quick exit from me, how it would invite me to share and then implement it's own agendas. This made me crazy, wondering how I might alter myself to fit. First I tried to be interdependent with others. Then I tried to be as charitable as I could. Finally I tried to be self-sufficient, to prove that I wasn't a taker. Nothing worked. I was never really a part, so I gave up. One day I noticed the scraggly neighborhood kids on the front steps. First they played, and the church did nothing. Then they made a ruckus, but the church did nothing. Finally they began throwing rocks and finally, the church did something. After the police left, I no longer wondered about the church. I no longer took the church personally.
posted by Laura 1:26 PM
Tuesday, May 12, 2009
Houselessness
Ken and I are soon to be houseless, which should not be confused with homeless, that wretched and ignorantly glorified condition.
Between you, me, and the fence post...I have a lot of feelings about this.
We bought the three family house in 2005. I had no idea how we were going to make it work, but I had hopes. For starters, we had support from our community. Verbal support as in, this is a good idea, there are a lot of people into renovation here, "we" can knock out this wall here, "we" can put a wall there.
Ken and I also knew we would have to refinance in order to do some of the major things the house needed, like windows. I was recovering from eight years of using the Klonopin "professionals" thought I needed and figured that eventually I would recover and sleep, and work full time. Ken had hopes he would get Happy Hands Press off the ground.
A few years later, in 2007 our refinance fell through. We were told that the house was not worth what we paid for it. Dollar bills floated out of the windows in the cold months, sometimes to the tune of 950.00 a month. The furnace went out that winter and we replaced it with an energy efficent one. This did not change the heating bill.
We were fortunate to have Kenny next door. Ken would tell him we needed help with this or that and I came home from work many days to find Kenny helping Ken with things like the water filters in the kitchen and shower. Andy made many trips to our house and the upstairs apartment where he fixed the toilet a time or two. Sam lived on the second floor and renovated the entire space in exchange for rent, which was a great experiment in interdependence and he didn't let us down! Steve helped us early on, and again later when he and Thurman and Becky helped us paint Emilie's room in Pepto Bismol pink. Our housechurch, at Steve's suggestion, put up a fence in the back to keep the dogs in.
Still, the house stressed me out. There were leaks in gutters and bathrooms and under sinks, some of which I had fixed, only to leak again. Things like frozen pipes during my week off made it seem like a second job, really. If not in actually upkeep, then in worry. The washer and dryer both kept breaking until we finally bought new ones, charging them to credit cards. I'd get a leak fixed on the back roof only for it to leak again, and ruin our living room wall. I'd call contractors and never hear back. When someone would come it would cost out the nose. It didn't seem like there were many breaks, or maybe this just wasn't my thing.
At one point I worked full-time. I would lie awake three and four hours in the night, finally getting back to sleep around five-thirty only to have the alarm go off at six. That kind of thing day after day. It was pure bullshit and I got sick of it. I decided I didn't care what happened, I wasn't doing that. I got my hours changed and even now, if I think I'm overdoing it, I'll slow down some more.
Ken has been overwhelmed just doing basic things he needs to do. A lot of times, because of my own stress and then seeing his needs go unmet, I have really lit into him. I feel responsible for too much and I resent it. We sold the car and started making use of public transit, both Metro and Access. Ken was on a waiting list for the longest time for a personal assistant. We are close to hiring someone now.
I am not necessarily objective when it comes to the kids, but I regret being so stressed out and for putting so much into something that we are now letting go of. I realize this is a time they are naturally pulling away from me; what would I have been doing, smothering them? : )
So I am telling myself it was never our house, it was our education. I didn't really know Ken and I didn't really know the community, and I didn't really know me after eight years being drugged by a system that needs to drug people. (I can't let that go.) Now I have a four year degree.
Now I think I know what is what. I know Ken better, know that I love him, and know that the things about him that irritate the crap out of me don't have to be a big deal. I can focus on things that are good, and positive, like the way he gives everybody a chance, and shows unconditional positive regard toward people who I think should be stomped on.
I think I know this community better. It is not as interdependent and committed to Ken as I had envisioned, but there is still time, and I'd like to think there are more than a handful of us who aspire to "be the change." When the talking stops and the doing starts it is a beautiful thing. That's the part I want to remain a part of.
I learned that I cannot do all things through Christ who strengthens me. Sorry to all you Christians, that's just my reality. I can only do what I can do and I don't apologize. I am not superhuman no matter what I took on or who I married. I ain't no saint. I don't wanna be a superhero. I don't want to bring home the bacon and fry it up in the pan, and will damn sure let you forget you're a man as long as I live in a society and culture that expects me to be a suffering saint, all the while sticking me with the interest, fees, and hidden charges.
It will be interesting to see what trouble I get into next.
posted by Laura 5:45 PM
Wednesday, October 03, 2007
Holocaust Mascots
What is a holocaust denier? I recently heard the Iranian president Mahmoud Ahmadinejad is one. Invited to speak to students at Columbia University in New York, he was vehemently condemned by many in the US for being a holocaust denier, among other things.
I decided to look up the words. I found that a holocaust is a thorough destruction, especially by fire. The Jewish holocaust was the specific one mentioned, although the term is not limited to the Jewish holocaust. I looked up deny, and it means what we all know it means: that a person believes, states, or acts as if something isn't what it is.
I thought about this for a while. The Jewish holocaust loomed large in my consciousness, bringing up images of emaciated bodies, pointed guns, and barbed wire. I took a deep breath as my thoughts settled into an uncomfortable physical heaviness. To deny the holocaust is to deny a people, I thought. It is like hearing the report of a brutal rape and saying to the victim and the world, "It probably wasn't that serious. Do we even need to concern ourselves with it?"
Was this crazy, or was it ignorant, or was it arrogant? I thought it was more than all of these. The word diabolical came to mind so I decided to look it up: extremely wicked or cruel, evil, of the devil, it said.
Yes, it fit. To deny a holocaust in which millions were cursed as the enemy so they could be systematically eliminated – to deny the theft, murder, and destruction of a people and their lives – this was, I thought , in every sense, diabolical.
After having been given a strong dose of many American opinions on just what people in this country think of the evil, Iranian holocaust denier, President Ahmadinejad boarded his jet that carried him back to where he came from, to Iran where he belongs. Far from the American soil.
Friday night in the American homeland things were business as usual, where communities gather on fields and in stadiums to support their children's sports teams. In this proud nation, bordering both the North Atlantic and the North Pacific Oceans, between Canada and Mexico, hundreds of US teams with names such as the Braves, Bombers, Chiefs, and Redskins, pull out sweet victories while their thousands of supporters cheer wildly in the stands. This, a decades long tradition in all forty-eight states, plus Alaska and Hawaii. A Bombers team proudly sports an emblem of a mushroom cloud, like the ones that hovered over the death and carnage in Hiroshima and Nagasaki. I myself watched the Walnut Hills Eagles get savagely slaughtered by the Norwood Indians before and after my son's marching band show at half-time.
No, it's not crazy. It's not ignorant. It's not even arrogant. After all, there were good reasons for why our country has behaved the way it has, and even if some people were wrong, do we need to concern ourselves with it now?
It will surprise me if we haven't begun the bombing of Iran by the start of next year's season.
posted by Laura 8:51 PM
Friday, September 14, 2007
Capitalist Gardener
I felt that my flowers betrayed me
After I planted them in the sun
Perennial smart investment
Low maintenance, easy care
Yielding crops of blooms while I do nothing.
I felt that my flowers betrayed me
Lying horizontal after the rain
Leaning heavily upon
Stakes and string and me
Well into the drought
That wiped them out.
I felt that my flowers betrayed me
As I flew to Boston
Polite society walked past
Acting responsibly
It was no one's job to water them
One week. Record temperatures. No rain.
I felt that my flowers betrayed me
As I put them out of my mind
Pursuing self-interest
In lockstep with a society
That leans heavily upon
Trickle down theories
And notions of all the world's poor
Pulling up by their bootstraps.
I felt that my flowers betrayed me
As I butchered them in my disgust
In a rush, my face flushed
Out of sight
Soon out of mind
As I must have been out of mine
At planting time.
posted by Laura 5:40 PM
