Autism discussion at Daily Kos…
I’m shutting up and staying out of it, but here it is.
Denying Denial
I expect some differing opinion on this… but here’s to admitting my position that seems from the outside to be a bit less than compassionate.
If someone is not born with a particular impairment and yet, one comes along later in life….or the one you have gets suddenly worse, or sprouts new subcategories or something…or someone is responsible for an aging parent and that parent hits a rather sudden, steep decline, into further physical or cognitive impairment.
I think everyone should have at least sixty days of complete denial….[or a significantly longer period if the impairment requires admission to a rehab hospital] so the brain has time to adjust behind the scenes to the new impact….
But I’ve seen people in denial for *years* about impairments that they, or someone they are legally responsible for come up against…
Come on!
The earlier one accepts such a thing, and says “Ok, now, what *can* I do at this new level, etc. etc. etc.
The better off, no? Positives are found sooner etc etc.
Quality of life moves up from the “bottom” it hit at the day of discovery, and it moves up earlier.
I’ve seen parents with children with impairment admit that for most of the first ten years after diagnosis:
“I just went to sleep every night and prayed that when I woke up in the morning, they would be ‘normal.'”
That puts expectations on the kid that are next to impossible, not to mention effort by the parent that should have included acceptance of the kid as is, and searching for support systems so both the kid and themselves don’t go bonkers…
Or an elderly person convinced their spouse of many years will be able to “get over” a serious chemical imbalance induced depression, deciding not to pursue a particular line of treatment…”They don’t need that stuff,” with the subtext being “I don’t *want* them to need that stuff.”
What the person with impairment or the caregiver *wants* to be so, is not the issue. What *is* is the issue.
Denial is a natural part of adjustment to anything, but having the process of acceptance stuck in *that* kind of neutral….it is a disservice to oneself or one’s kin.
I’ve been called harsh and I suppose I am because people that do this, able and otherwise just irritate me. (I try hard not to tell them so, and generally vent to a disinterested third party.)
I do have this thing going on in my head that says, particularly to the formerly very able, very fit, and (from my perspective,) well off financially…
“Jesus! Stop standing there with your fingers in your ears saying ‘Lalalalala I don’t *hear* this!’ (metaphorically speaking) Do the research, and call the condition or impairment by it’s right name! Admit that something has happened.”
Admit it exists, and go forward from there *with* knowledge.
Then you’ll be ready to really fight fight fight, for that elusive help and support system that is so hard to come by more often than not….It’s going to be a struggle and a bitch to get what you need, because our society is presently structured to tell you *no*
Don’t ride the denial train too long.
Shafted, or Elevatorial Misconduct Part II
On the eve of the anniversary of the passage of the ADA:
I could do some smarmy inspirational riff…and I’ll *almost* commit that very sin by saying…
I absolutely know I’m blessed to have a job and be keeping it…all those stats about the 70% unemployment rate for people with impairments have been staring me in the cranium since 2004 when I started paying attention.
So yep. Happy about that.
Or, I could be grim about:
Those with impairments still not in the community, let alone working at a paying job.
The numbers of vets with impairments continue to grow…
More and more families that have a family member with impairments are facing poverty and economic disaster.
The many interviews that I *know* I’ve not succeeded at because of my size and/or impairment.
The *societal ignorance*, that willful denial of the fact that those with disabilities are able and willing to give of their time and their gifts in job or volunteering opportunites, and it is the *attitudes* of those filling the positions, that keep many out of work.
But I’m going to skip the sappy inspirational kitsch, as well as the grim listing.
And instead:
The ADA was passed:
Before Bill Clinton became President.
Before the Family Medical Leave act.
Before protease inhibitors changed HIV treatment
Before the Oklahoma City bombing.
Before “The West Wing” had it’s first episode.
Before the Y2K scare.
Before the Supreme Court examined the 2000 election and made it’s ruling.
Before 9/11
Before the Iraq war.
And there are still *medical facilities* that are inacessible.
Many builders wilfully disregard Universal Design in new construction when it would work quite well
Businesses still wait to be sued before they comply.
Courts have begun to narrow the focus of the ADA so that someone can be legally and correctly ruled too disabled to do a job but be denied any recourse because they aren’t disabled enough to seek redress under ADA.
And, since it’s always about mememememe on this blog…
My apartment complex that I’ve lived in since 1999 loves to collect my rent. Understandably so. But they’re missing a point.
In order to continue to meet my obligations I have to keep my job. In order to keep my job…doesn’t it stand to reason that I would have to be able to *get* to my job? (my job description doesn’t allow for telecommuting)
In order to get to this job…I must leave my apartment building.
*Which* as it turns out may be up for grabs *again* tomorow because the elevator is not working.
Of course I could live on the ground floor…I could move. And after three of these elevator foulups in two months I have *asked* that I be allowed to do so. Why *no!* the apartment says…you cannot break your lease between lease terms to live in a less expensive apartment….
Um, wait. If I cannot leave the apartment, and cannot continue my job I will be *unable* to pay the rest of the lease on this place…
I cannot break the lease and move to another complex for the same reason….the lease ends in September of 2008.
I think I’m going to have to offer to pay the two bedroom price on a one bedroom downstairs…and then leave at the end of the lease…
All because the elevator cannot be mended.
“Access” to buildings and jobs is still a relative term more than 25 years after the passage of the ADA…
*Enforce* it already.
[Curseword of choice] it all…
I’m going to bed.
Well, I’ve been ergonomicked…
None of my other employers post ADA did an ergonomic makeover of my workspace as intensive as this has been…
Now shelves, computer screen are level with the reach of my arms and my line of sight…and other rests and technology are in the ‘correct” spot. I’m hoping that this increases my efficency and also speed of process…while being a *huge* amount more comfortable…
We shall see. The first hour and a half of use seemed pretty good…
One of the best I’ve read about caregiving
…and it warms my cynical old heart to see such a clear distillation of the basics.
Midlife And Treachery 
