Many Years of Poems

In 1990, when I was in the ninth grade, the Americans with Disabilities Act was passed into U.S. law. I had to research it and write a paper on it for my English class. At the time, the conditions which now render me legally disabled (major depressive disorder with psychotic features and post-traumatic stress disorder) were present but not yet disabling (the psychotic features didn't show up until my late 20s, and the depression and PTSD were manageable at the time).

I hadn't been around many people with disabilities at that point in my life. My elementary school best friend Jessica had a twin sister named Bethany who was blind and severely mentally and physically disabled; Bethany could not feed herself, nor control her bladder and bowel functions, nor had she learned to speak by the time Jessica and Bethany were eleven years old. In ninth grade, my best friend was my next door neighbor, Suzie, who was legally blind; she was severely nearsighted and had been born without a certain type of nerve cell that enables humans to perceive color. She was about six months older than I, but attended the state school for the deaf and blind instead of the local public high school I attended. PaPa (the "a"s are pronounced like the a in apple), my maternal uncle's father-in-law, who, despite only a tenuous connection by marriage to me, always treated me like a granddaughter, had lost the lower portion of a leg and was losing his vision due to complications of diabetes. That was about the extent of my experience with people with disabilities at that time.

I don't remember any more exactly what I wrote in that paper; I no longer have a copy, either printed or electronic. But I do remember that most of what I wrote was about reasonable accommodation, like ramps for wheelchairs and the widespread availability of closed captioning and other adaptive technologies. I believe I said that it was only fair to provide reasonable accommodation, that to fail to provide reasonable accommodation was to disenfranchise people with disabilities. I don't think I was wrong, but I also realize in retrospect that I didn't quite get the whole picture.

Some years later, I remember telling a shop owner that he was in violation of the ADA because I couldn't get my (then infant) daughter's stroller through his shop aisles, so how was a person in a wheelchair supposed to shop in his store? (The stroller was narrower than most adult-sized wheelchairs.)

I remember at various times being on crutches for temporary ailments of the lower extremities and cursing the inaccessibility of public establishments and thinking, "Jeez, what do people who use crutches permanently do?"

I think those are perfectly valid reactions to an ablist world, but that's still not the whole picture.

It wasn't until I became disabled with an "invisible illness" that I really began to see. To look at me, you wouldn't think that I'm disabled. I can stand and walk without assistance. I wear glasses but that hardly counts as a disability. I can hear. I can speak and write clearly in English and Spanish, and I can read and comprehend French and Latin (never was too hot at writing or speaking French, and my Latin is VERY rusty). I can drive a car (even a stick shift) without adaptive technologies (other than my glasses). It took ten years, but I have a four-year college degree.

What I can't do is hold down a paying job. Some days, I am so depressed I cannot get out of bed except to use the toilet. Some days, I can get out of bed but I have to force myself to do it. Some days, I'm so afraid of people that I cannot stand to leave my house. Some days, I can't trust my perceptions, because my eyes and skin are telling me that there are bugs crawling on me. Some days (like today), I'm okay. Occasionally, I even feel really good. Because I can never predict from day to day whether I'm going to be okay or not, I can't commit to a work schedule. Before my condition became this severe, I worked 8am-5pm Monday through Friday (like "normal people"), doing clerical work. I can't do that any more. I'm working with my state Department of Vocational Rehabilitation to try to find a line of work in which I do not have to commit to a work schedule and therefore might be able to get and keep a job again.

What I've come to see and detest is the idea that if you can't (or for that matter, don't) earn a paycheck, what you do means nothing to the world at large (but the "don't" part is for a post on sexism, and that's not what this post is).

What I've come to see and detest is that if you differ in any way from the able-bodied norm, you're not real.

What I've come to see and detest is that if you're not in a wheelchair, or on crutches, or wearing hearing aids, or visibly different from the able-bodied norm, you don't count as disabled.

I'm sure that's STILL not the whole picture, but that's disablism, to me.

WE HAVE OUR NET BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well, my lawyer was wrong about one thing. I do qualify for SSI, so SSI deposited a nice fat check into my checking account and I was able to catch up the bills and do a lot of stuff I've been wanting to do, including having a manicure and pedicure today. I took Dixie with me and paid for her to have a mani and pedi too, and we also both got our eyebrows waxed. I figured she might like to feel pretty too.

I will also soon have Medicaid and I technically already have Medicare, so I can get my meds without depending on my doctors for samples.

I have to go for my joy-joy (household term for pelvic exam) next week. I don't expect any drama there; it's just that time of year.

Nicholas is coming Saturday for an extended visit, hopefully to stay.

And I've been reading. A LOT.

That's about it around here.

Cliff is sick. He's got a stomach virus so he's in bed resting. When he wakes up I'm going to make him drink some water and see if he can keep that down. He needs fluids after all the throwing up and diarrhea he's had. Poor honey.

I'm okay, just on my period so I'm a little crampy and cranky.

Mini-me was supposed to come over today but she's sick too so we're going to put off hanging out until this weekend.

I guess that's all that's really going on around here. That, and waiting for SS to come through. *fingers crossed*

So I paid bills today and now we don't have much left for groceries. This sucks.

Oh, well. At least (hopefully) the disability money will come through soon and we'll stop this constant struggling.

It sucks for now though. Bleah.

I just got home from the hearing. The judge found in my favor. Social Security may decide to appeal the judge's decision but then they might not. I won't actually see any money for a couple of months still.

I'm not quite to YAY! I'm still just relieved. I was so nervous about it and I was so nervous during the hearing. The medical expert had me scared because he was saying that I function well between episodes but then my lawyer asked him if I'd be a reliable employee and he had to say no. I think that's what clinched it.

I want to cut so badly right now. I feel like it would relieve some of the tension.

But I have no razor blades, and I can't sneak a kitchen knife.

So I'm picking at bug bites and making them bleed. It's not helping.

I'm so anxious I'm shaking. I don't know if I'm going to be able to sleep tonight.

So I'm home from the hospital.

Tomorrow will be the test. Cliff will be at work, so I'll have to be good and stay out of my room (where the Klonopin is) and make myself stay here for the hearing.

The hearing is Tuesday and I'm nervous as shit about it. PLEASE PLEASE PLEASE let it come through for me. I need it so bad.

Well, the damn Zyprexa landed me in the hospital. On Tuesday, I just lost it completely.

I was screaming, ranting about things crawling on me and shadows coming after me, and clawing at my skin trying to make the crawling things go away. I was hearing voices that told me to kill myself. I poured all my Klonopin into my hand and Cliff had to physically force me not to swallow them and to put them back in the bottle.

So Cliff told me either he'd take me to the hospital or he'd call 911 and let them take me. I let him take me and I got home early this afternoon.

The doctor in the hospital put me back on Invega and gave me enough to get through a month and a half so maybe I can straighten out the financial situation with my regular psychiatrist's office so I can go see my psychiatrist again. Also, by then, I'll have had my disability hearing (please please please please please let it come through) so maybe I'll have that help by then too.

My lawyer's office called me this morning. My hearing is rescheduled for July 15, so now I have a date.

PLEASE I NEED IT TO COME THROUGH. PLEASE PLEASE PLEASE PLEASE PLEASE!!

I had to cancel my counseling appointment for tomorrow because if I reserved out the payment for it, I'd have had $40 to buy groceries for two weeks. As it was, I managed groceries for two weeks for four people for $86 and change. Of course, I splurged on the goodies for Cliff's birthday; if I'd been a little more restrained, I wouldn't have been so pinched with the regular grocery money. But because my grocery-fu is strong, we will eat decently if not grandly on the food I bought. :D

Gods I hope my disability comes through. I'm so tired of this scraping for money, stalling one creditor to pay another, praying that the utilities don't get turned off, living on cheap food bullshit. It doesn't do Cliff any good and it doesn't do me any good, and it probably isn't good for Dixie and Nancy either, although I'm less concerned about them than I am about Cliff and me. As it is we're going to lose cable, and I am a certified internet addict. I just hope we don't lose the phones at the same time. I don't know what I'd do without some way to contact the outside world.

I am so wound up. Cliff wanted me to take a nap with him and snuggle, but I couldn't relax enough to fall asleep, even though I really like being curled up next to him in bed. I laid down with him for a little while, and then once he was comfortable and ready to snooze, I got up and came in here to write and chat.

I've taken three Klonopin so far today, one as my normal morning dose, one before I went to the grocery store, and one just a little bit ago. It doesn't seem to be helping much. I'm still all wound up and physically tense.

I wish I could just relax, but the closer I get to that damn disability hearing, the more wound up I get. (The disability hearing is next Thursday.) I'm just so scared that I won't get it, that we'll be stuck in this scraping for money situation forever.

Last night it took me a while to get to sleep because Cliff was at work so I was alone. I felt unsafe for some reason, scared and unprotected. It was not cool. This whole situation is not cool.

PLEASE PLEASE PLEASE PLEASE PLEASE let the disability come through for me. We need that money so badly and it will make things so much better and easier.