I've been blogging a long time. This edition that is more family and child focused is just the newest version of years of being a part of the online community. Most of us have faced the conflict of having to decide how much our online and offline lives will merge. If you blog long enough, these elements of your life will intersect from time to time. Those not familiar with the internet or the blog world will find you odd and wonder why you do it. They don't necessarily understand the concept of an online community and may think you a freak or a nerd (hey, for me...that's a given : ). I have always blogged with a sincere intent to be honest and fair and to not cause harm. I haven't always been able to be successful at that and for this I apologize. But mostly I blog unapologetically. This is me. These are my opinions. Feel free to leave dissenting comments or emails. Your comments are automatically published and you can request that your emails be published or not and I will honor that. Of course, as the saying goes...if you don't agree with me, you can get your own blog.
Bloggers blog for many reasons. I blog because writing is therapy. It helps me think. I love my readers who I learn great many things from. Being deaf/blind makes it hard to meet people and the internet has been an incredible way for me to fill that social gap. I also have always felt that I have a unique and often misunderstood story to tell. This particular blog, for my children, is for them to know that we may not look like every other family. But we are a respectable, loving, functional family that has our warts but we do our best. And when you look at the comments and the blogroll, we are just one family among many beautiful families that are doing the same.
If you know me from real life, Welcome. It's okay that you are here. The best thing to do is just let me know you are reading, and then I won't bore you with telling you the same stories you've already read. D will tell you, and he has always known that I've blogged, that he doesn't even bother to read my blog because it is everything he's already heard. But I always give him the URL and tell him about it and the others that I communicate with. So I do have blog statistics and 9 times out of ten I know that you are here. And now you know that I know that you know that I know....so okay. Welcome! Feel free to comment, either in person or on the blog.
And now...from the Archives:
Several years ago I wrote a post on a previous incarnation about why I blog. It came out of an interesting instant message discussion I had with a fellow blogger named Taren who I still corrospond with. I have been trying to figure out how I should string all of the blog posts together. I started out not using anything nifty like Moveable Type or Typepad and did it all by HTML. So perhaps as soon as I get some server space that is worth a darn I will put the olden stuff back up. But for now, here is a blast from the past. The specifics in this entry may not make sense to you, but I think you will get the major drift:
The title was "Permanent Record of the Oppressed"
dated January 10th, 1999
I have gotten a surprising amount of responses the last couple of days about my last two journal entries, L, J. and Comfort Zone?. All have been very complimentary and supportive, so thanks for that. But being new to the online journal world...I started getting a little nervous about people in my real life finding this site. I also told a real life person about this site for the first time, (DLR) cuz I thought he already might know of it anyway due to an email mix-up and I'd rather just have it be out in the open after I wrote a lot about him. I don't exactly know why it makes me nervous, however, because little of what is on this site is unknown to the real people in my life. I talk about all this stuff to them anyway for the most part. So what gives? I think I'm afraid they will not understand why I put this stuff up in public view for the world to see.
I asked a few fellow online diarists about this. Why do we put all this stuff up for public scrutiny? I got some of the usual answers. We like to write and express our opinions, its fun to be a part of the online community, its a good way to keep in touch with everybody without having to repeat everything to everyone, you can just refer them to your site, etc. But then I got into a discussion with Taren that was very interesting and hit the nail on the head for me.
"Journals are the permanent record of the oppressed," she says, "Doing them online just puts them in real time."
"How so?' I ask.
"Imagine understanding the holocaust without Anne Frank or Corrie ten Boom. The only record of Anne Frank's existence would be some fascist nazi number that says which camp she was in, what slave labor they had her doing, and which gas chamber she smothered in. We'd know nothing about her except what the nazis wanted us to know, that she was a 'worthless Jew'. Her diary gave us a record of who she was according to her, and it helped us not only understand her, but humanized the plight of all of the oppressed people in the holocaust. Imagine if it were possible for Anne Frank, or ten Boom in her secret room to have been able to publish her story immediately and online. If it had been possible, people may have understood the problem sooner and perhaps less people would have been killed, maybe not even Anne Frank."
Good point, but I'm not Anne Frank, and either is Taren. Nothing we have been through compares to a nazi death camp. But Taren, who comes from a foster care background has some interesting ideas about the unfair paper trail that is left behind for the "down and out" as compared to, say, your average healthy white male SUV driver.
"You know the joke about how there is no permanent record?" she goes on, "For most people, that's true. Sure you have a credit report, a financial paper trail, maybe some job evaluations, but that is the extent of it. If you are poor, if you are in the court system or the social welfare system your paper trail is all about what others think of you. Its all a bunch of judgments and decisions made on your behalf. Other people of so-called authority are always making assumptions based on their opinions."
As Taren and I are typing to each other, I am glancing at DDL's chart that his home health nurse left on his desk. It has notes related to DDL's eating problems and low weight. "Patient. seems unconcerned to prioritize eating. Not interested in suggestion of 4 nutritional supplement a day." That's stupid, I think. He is so concerned about eating and tries really hard to increase his calories. In fact, I think he told her that he could not afford 4 nutritional supplement a day. I flipped the chart to the financial section. It shows a checklist of things the patient can't afford. Housing, food, etc. She didn't check any of them. (Meanwhile DDL is applying for food stamps, and his portion of our rent is more than he gets from Social Security in a month.) I sigh. Tomorrow the Senior and Disabled Services bitch is coming to do a home visit like she does every few months so DDL can qualify for Attendant services. She will walk around our house asking snooty questions and jot little judgment down in her notebook.
"I all of the sudden get exactly what you mean." I type to Taren.
And I finally realized the main reason I keep an online journal. I think of my permanent record. Social services notes that I was neglected as a child because I was underweight. Court papers upon court papers dealing with a crime that I was a victim of. Medical records that are included in the court papers that discuss everything from my mental state to my anatomy. Special education evaluations, psychiatric reports from psychiatrists with their own agenda. Welfare, food stamps, section 8 housing reports. Vocational Rehabilitation assessments of me, my functioning, my attitude, etc. All supposedly private but really rather public information. All the opinions of others. Mostly others with their own agenda.
I have read all these stupid little statements that someone came up with about me after looking at me for 2 seconds or not at all. Its all out there. And it all gets passed from one institution to the other. And they own these files, not me. They say things like:
Seven-year-old girl with severe disability denies having disability. Need to work on acceptance and appropriate expectations of self. (At seven, I didn't know society would require me to label myself yet.)
[SLW] is acting out inappropriately by engaging in dangerous and promiscuous sexual behaviors. (This was ridiculous. The tight-ass prude shrink who wrote this probably had more sexual experiences than I.)
When solutions for dealing with her mother's mental illness were discussed, client became hysterical and refused to cooperate. (Though never officially diagnosed with a mental illness, my mother had called up voc rehab and threatened suicide when I was staying there with my boyfriend Curtis. They came to me and told me to get out because they didn't want to deal with my nutty mother and possibly be sued. I got up, said a profanity and left, slamming the door behind me.)
By her poor attendance, client is showing evidence that she is resisting accepting her blindness. (I've had poor attendance since the fourth grade. I would go out with friends and what not. I'm not sure how I can NOT accept my blindness.)
These are just some examples of many of the little things that are on my 'permanent record' Taren, who despite some of her troubled past, is now a successful career woman with a husband and small child, has the same kind of crap following her, too. Part of her file deals with a custody battle, and people will say anything about a kid to the court to prove that she is damaged by the other party. She has everything in her record from drug abuse to sexual abuse to violent behavior. All of which she says are untrue. And anyone who has ever given a Victim Impact Statement to an aggressive prosecutor knows what a double edged sword that can be. You want to come across to the perp like you have it so much together, that nothing he ever did or could do could even make you flinch. Meanwhile the D.A. will drudge up every minute of counseling or misfortune you've had to make it look like your life has been ruined. All on record.
I started to notice somewhat of a pattern to many online diarists. Many have this sort of 'permanent record. For some, its not as personal as ours. For example, some people of different races and cultures just want to tell their own story rather than have it be stolen by stereotypes and prejudice. Some people seem to have families that have never really let them speak for themselves. Some are young and are teased and tormented in highschool and don't feel that they are given a chance to express who they really are without ridicule. People write online to have their voice heard when that right has historically been taken away from them.
When I die, I don't want the only written record of me to be a bunch of social service, court and medical bunk. I want there to be a true understanding of who I am from my voice. I want my children with cancer who die to also come alive on the pages, rather than be just some lab results in a chart. I write online so that the understanding can begin now, because now is when I have to go through the world as a semi-deaf, semi-blind, semi sick woman with a past who deals with dying children and a quadriplegic best friend. I want everyone to understand that beyond those stats, I have the same enjoyable, frustrating, fun, tiresome, strange, beautiful life as everyone else. And I want this to be my permanent record.
Thanks, Taren.