I read a great post yesterday. From someone who’s public blogging face shows that they love their kid.
They don’t disguise convienience as love. They don’t want to be viewed as a sainted martyr or some other lousy stereotype for raising an autistic child. No one will write some horrific news story about how their child was neglected or abandoned. They love their kid. That’s it. I’d imagine they have daily stresses and concerns related to this, and had some anguished days when they first knew the score and days when they are frustrated with their life…not the child, but the life….but that’s just an adjustment. And the loving ones make it quickly.
My mother loves me too.
Imagine a late 1950’s living room 46 or so years ago. Two good looking barely twentysomethings are sitting on a couch. The guy has a deer in the headlights look on his face, and the girl is perhaps the most terrified she’s ever been up to this point.
She hasn’t been able to tell her father yet. But she’s pregnant, and it was quite unplanned.
Her father and his father are facing each other across the room. Her mom is standing terrified in the kitchen doorway unable to make a sound. His father is there. I never knew him, seems he died of a hard living heart attack after I was born, but before I was out of the incubator.
I imagine him as the coolest looking guy on the block with unfashionably unruly hair, the requisite fedora, and my uncle’s killer smile (that was something of a family trait.)
Cool Guy said to the Engineer: “Well, it looks like these kids are going to have a baby.”
The Engineer started toward the young man bent on physical harm. He asked a question, none too nicely about the young man’s knowlege of prophylactics.
Cool Guy stepped between his son and physical harm, no longer quite so jovial.
“*** Sit down. We’re going to settle this like civilized people.”
After some discussion that I’m not privy to, Cool Guy and his son left.
The Engineer sat down with his daughter sometime between that night and her marriage, and said. “***, you know you don’t have to marry this boy…”
I know he offered to have her stay with them *with the child in tow* and they would help her raise it.
Adoption may have also been discussed. I don’t know about that.
This post will no doubt raise questions about whether abortion was discussed. That’s not the point and I’d prefer not to go down that track, except to say my understanding is that it was not considered by the girl, the guy or either set of parents. I don’t know why, and I’d rather not examine that.
They liked each other. It wasn’t love. They married.
And, I showed up premature, the cause of my CP.
He started drinking.
And that twenty year old girl lost:
A teaching career. She did get her master’s in math but was unable to use it as planned.
Any time to handle adult self discovery without a baby to consider.
And a romance with someone she fully loved had to be delayed and deferred.
And gained the 17 year long suffeirng trying to undo daily damage done by an alcoholic husband.
She loved me. And resented me. She protected me. And was bitter about what my existence cost her. She liked me. And tried to control me. She laughed with me. And was angry when I had less empathy than she thought I might. She pushed me when I needed to be pushed. And often expected perfection from someone who would never be. She taught me. I taught her. There was a lot of putting my needs first in the early years, and a lot of open selfishness later on.
Most of those tough changes would have affected her *whether I was disabled or not.* It was the unplanned pregnancy that drastically altered the *course* of her life, and then, when the diagnosis came, when I was four…she thought that made her even more permanently trapped, I imagine.
If I could use a time machine, and travel back, hold up a giant signpost for her during this time in my life, I’d go back, roll my wheelchair up to the large back windows of my home, and hold up a sign: “It’s Not The Kid’s Fault that She’s Here at All or That She Has CP.”
And I can’t stand that I’ll never really know where the bitterness stopped and the love started.
Love was there. Definitely I’m not denying that. But how much got overshadowed by her percieved losses….to be married to an alchoholic… have an unplanned child, *and* have it be disabled.
In those earliest days, some further family members gave her unflattering names, and wagged their fingers *really believing* my disability was the result of her “sin.” But she was still beautiful, smart, and beloved, and so soon into it, that stopped.
And the grandparents, great grandmother, aunts cousins on both sides… *never* treated me as anything less than someone they loved and enjoyed…
When a parent loves a kid without complications, it’s clear and obvious to the kid, and helps the kid all the way through to being a grownup, and beyond.
Complications made things murky for me. And are part of the reason why I feel ungrounded, uncertain, sometimes.
Is here., and made me think about my own frames about communication and realized that I need to broaden my perception of how communication happens and what constitutes facile communication…and, it also jogged my memory the assumptions folks can make about my impairments.
1. “I know bunches of people with CP who drive…you should drive [Subtext: “She doesn’t want to drive and she really could and she won’t because she’s lazy and likes having people run her around.]
Um no. My depth perception and lack of much clear peripheral vision in the right eye are “off” enough for me to have no sense of lenghth of the vehicle or be in danger of anyone who wanted to come up on my right. My reflexes are further shot since the chemo…just no.
I live in the freakin’ Rockies…with some of the best scenic driving around in the other three quarters of the year…do you think that if I *could* drive through Rocky Mountain National Park, that I wouldn’t *beg* for that license?
2. “You’re smart, so you’re not really disabled…why are you asking for all this help?”
Smart gets you 50 cents and a cup of coffee at Denny’s. If the physical plant of an entertainment venue, a job, a school, a rec facility, a church etc etc…is not wheelchair accessible, or is only minimally so…I have to go collaborate immediately with those in charge to work to find an acceptable solution. *That’s not whining!* It’s necessary.
3. “I could never live like that.” [Subtext: I don’t want to, no one should so let’s minimize the validity of that life, that particular experience]
It’s amazing what you find you can do, because you must do it. So don’t tell me the strategies I use to live my life are “impossible.” It’s your imagination that has limits on it, placed there by fear
4. “I don’t understand how you can possibly [insert activity here].”
And, I don’t have time to explain how I can possibly [insert activity here.]
And the most annoying assumption of all. Running through some abled’s strangers heads, never really spoken:
“Simply because you are 1. Disabled and 2. Fat, that means the clothes you wear, the food you eat, the things you like, the workarounds you do, your dating life, your recreational habits, your spirituality, your relationships with friends or family…are all open for me the abled to poke my nose in *and pontificate* about things that are….(wait for it)…actually none of my business, personal things I would *never* offer an opinon or judgement about to an able and /or thin person.”
The only thing right about *that* of course is that how any one individual with impairments or any group of people handle their impairments is, very very often: None of an able stranger’s business.
One of the many things I tire of trying to convince a small subset of the able…that I have time to crystallize and codify as the resumes go back up and I try again.
I’m not out to gain “special privilege‘ particularly in the workplace.
I’m not throwing myself across their career path, going home at night thinking of the myriad ways I could derail their march to the corner office just by my presence in the next cube. There was a woman long ago, who thought just that…and I learned in the middle of her three year hate on for me that her actions were informed by someone she knew with impairments who did nothing but ask ask ask ask for help…and she did not feel any benefit in return for knowing this person….Therefore, somewhere in her head, I suppose, all those with impairments were emotional and financial vampires, out to work an angle.
If I learn some new skill, it’s no threat to the vast numbers who already know it.
If I move outside the “box” of my job description (in a non union shop) it is about me finding my value to the individual organization, not a dark conspiracy meant to dislodge those already working away.
Nutcase of the Day:
Or why rationed care needs to be “some of everyone” and not “more of some and less of others” and not “none of those because they aren’t important”:
Via the Justice for All Listserv:
“”Deputy Mayor: The Best Thing For Disabled Children Is The Guillotine
By Geoffrey Lakeman 24 September 2005
A TORY deputy mayor has sparked outrage by calling for disabled kids to be guillotined to avoid wasting cash on their care.
Retired GP Owen Lister made his sick suggestion to fellow councillors as they discussed sending the youngsters to a #3,000-a-week care home.Mr Lister, 79, told them: “I would guillotine them.” He has now quit as deputy mayor but yesterday stood by his outburst.He said: “I indicated at that point that perhaps the guillotine might be better.
“These are children you can’t educate. It’s merely a matter of caring for them until they die. “The only difference between a terminally ill patient and a severely handicapped child is time.”
The councillor, of Swindon, Wilts, argued the funds should instead be used to cut NHS waiting lists. He added: “It shows how peculiar we are as a society on this matter that wespend this vast amount of money caring for disabled youngsters to verylittle purpose at all.”It would be better spent on those who might actually benefit, such as cancer sufferers. We have 5,800 people waiting to go into hospital inSwindon. A percentage of those will die as a result of waiting too long.”
His remarks came as the borough council’s children’s committee debated putting youngsters in a Cornwall home. Labour councillor Fay Howard said:”There was a slight pause and looks of disbelief. Everyone was totally shocked.”Labour colleague Barrie Thompson, the committee’s vice-chairman, likenedLister to one of Hitler’s henchmen. He said: “The last time I heard remarks like that were from Heinrich Himmler.””
This gentleman needs to have a conference call with Governor Bresden of Tennesee. Preferably somewhere offplanet.
I’m not stupid. I know the analogy the author of this post was trying to make. Trying to send a message about the current political situation and the man at the head of our country.
But *in so doing* he sent a post to more than 15,000 readers underscoring the idea that the best choice a crip could make when first they discover disability was to “lay down and die”