When the Helping Professionals Fail

     There are some general facts to which I subscribe and which are responsible to a large degree for my thinking and actions in certain key areas in my life.


a). The government is not responsible for my health, welfare, or happiness.
b). No other agency is either.
c). If I want something different, then I have to do something different.
d). It takes courage to ask for help.
e). It takes guts to get out when said help is becoming a hindrance.




     Within the past decade or so, I have experienced repeated actions of a particular agency-- whose described mission is to foster vocational rehabilitation among the disabled population who it claims to serve-- which appear to be contrary to its stated mission. The last straw was the supposed procurement of part-time work that I could have performed at home during my own scheduled hours. The job was temporary and seasonal. Although I'd been led to believe erroneously that the work itself would employ my ability to doctor photos [and it actually would not], I was willing to give it a go anyway.


     It was not to be. Contract was supposed to start mid-September until the work ran out sometime in December. I would have had bits of things to do throughout the year after that until the next cycle of mid-September through December [the busy time] and so on.


     State agency had to do its paperwork. Sister agency that was going to pay me for the first one hundred hours or so had to do its paperwork. Meetings had to be held. It became mid-October. Nothing was happening. I received word yesterday that my services would not be needed after all.


     I don't blame the employer for backing out. Business is business. Employer needed someone from mid-September, not from mid-October or afterwards. Neither is this one my fault. No love to the bean counters and pencil pushers for this state of affairs.


sapphoq healing t.b.i. says: I have referred myself to my own factoid labeled e). It takes guts to get out when said help is becoming a hindrance. I'm out. I have other options today. Screw your broken system. If you aren't going to help me, then get out of my way. 

Standards and Excuses

There was a time when I [briefly] had the services of an "art therapist."  I've written about her once before some years back.  But the story bears telling again since the passage of time may bring a clarity to the mulling over of past events and situations.  The woman was indeed a situation.

The last time I blogged about her, it was to register a public complaint about two things.  Her PhD was fake.  For 35 bucks and a copy of her "book," she was sent a degree from a certain mail-order university which gave "credit for life experiences."  Said university operated solely out of a slummy office in Hawaii or somewhere like that and I've heard that it has since been forced to move to Asia.  

She is not the only person in the universe who has hung out a shingle on the basis of a bogus degree.  There is a man in the same city who the state contracts to offer services to folks with traumatic brain injuries.  He also has a bogus degree.  Although the State was made aware of his situation, they chose to renew his contract offer that year and the one after.  He is still under contract with them as a "PhD" which he did not earn.

Last I knew, the art therapist was claiming to use her [real] bachelor's degree for her work.  The problem is that she still also uses the title of "Doctor."  I am equally sure that any insurance companies are reimbursing her under doctor rates.  She is not under contract with the State as far as I know.  She does offer expensive workshops for professionals to attend, in addition to taking on clientele.

The other complaint that I had blogged about was how I came to be discharged from her services.  She fired me over the telephone.  The reason why I was terminated is because I refused to go to her personal internist for medications.  I had my own professionals in place for that, including the shrink who understands t.b.i. and who is probably more qualified to prescribe psych meds for me than her internist is.  The conflict of interest should be obvious to anyone who knows anything about ethics.  It is not ethical for her to insist that I see one of her medical professionals instead of one of my choosing.

That particular blog post yielded a comment from a woman who claimed that "everyone loves" the art therapist-- as if that makes a difference-- and that the art therapist has helped a lot of folks.  I have no direct information on how many folks the art therapist has helped.  Nor do I have any way of measuring what "being helped" might evidence as.  My original complaints remained that her advanced degree was bogus and that she dumped me over the phone under less than ideal circumstances.  The fact remains that in the couple of sessions that we had, I learned a few things.  So I will not say that the woman is useless, because that is unquantifiable and not fair.

The idea that I am addressing in this post is the supposition that because we are brain damaged, we are granted a license to get crap work published or perform any employment for hire in a substandard manner.  The world does not have to adjust to me and my atypical neurology.  I maintain that I am the one who has to adjust to reality as it is and not the way that it "ought to be."  If I want the same rights as everyone else has, it follows that I have to hold myself to the same standards of performance that everyone else is held to.  I live in a state of constant irritation and frustration.  I don't get to impose my emotional state on those around me.  And I don't get to have special privileges on the basis of my whacked up brain.  The "art therapist" wrote terrible prose.  I read her "book" and I did not think all that much of it.  Being loved is the stance of an emotional infant.  Self-publishing terrible prose and having a diploma mill degree are not signs of achievement or self-respect.

I recently read a book by another "survivor" of a traumatic brain injury who works as a counselor.  It also demonstrated substandard writing.  I don't mean that I didn't care for the book.  I mean that the book was poorly written.  To be sure, her book was better written than the "book" written by the art therapist.  But it still was not a professional job.  The book by the survivor-counselor employed choppy sentences throughout it.  It also left out some key information that t.b.i.-ers and family members deserve to have in such a book as the one she wrote.

After my accident, I was no longer able to express myself in a clear fashion on paper or in e-mails.  I had to re-learn how to write sentences.  Since there wasn't any cognitive rehab in the works for me [due to insurance companies fighting over who would pay my medical bills-- the one three-day a week program that I qualified for refused my offer to pay cash up front without any sort of discount], I had to be in charge of my own rehab.  I learned how to write grammatical sentences again in a t.b.i. chat room and in a t.b.i. e-mail support group.

The world does not owe me a living.  I don't get to have slovenly standards for myself on the basis of my brain damage.  To be sure, my injury means that I have to work hard at daily everyday stuff that many people take for granted.  Nothing is automatic for me anymore.  The brain fatigue kicks my ass on a regular basis. 

The voc-rehab folks want to send someone to my house for an hour or two in order to watch me do housework and offer a few tips on body mechanics.  After this, the voc-rehab folks want to discharge me as a rehabilitated homemaker.    In other words, V.R. has not been able to help me obtain any employment, never mind meaningful employment.  I understand that I am getting dumped.  Oh well.   

Anyone who has visited me in my home is aware that a few tips on body mechanics will not in any way render me an adequate homemaker.  I continue to struggle greatly with initiation, organization, and stamina on a daily basis.  I keep pushing myself to find a different way of doing things even as I prepare to hire someone who will help me for several mornings a week with home maintenance.  Knowing that I need help is not an admission of defeat.  It is a sign of strength to be able to ask for assistance.  I am comfortable with that.

 My experience with the professional helpers and bean counters at the V.R. office has left me grateful to the few people in my life who have never stopped believing that I will again find my way to viable employment in spite of the obstacles that I face.  And I do know what I want.  My old dream of writing books has never left me.  It is something inside of me that demands that I write.  I have to write.  I continue to practice my writing in blogs and journals and forums. 

I've been published in many literary magazines [lit mags].  I have way more than fifty publication credits to my name.  And my stuff has appeared in three anthologies.  I've read at open mics.  And I keep on writing.  It is my hope to get good enough to land a book contract.  I anticipate having a self-published e-book ready for market soon.  If I live long enough, I hope to get good enough to get paid for my writing up front.  I figure that I am brain-damaged but I am not dead.  I want my stuff to stand on its' own merit.  I don't want to be known for my dysfunctional brain.  I want to be known for excellence with the written word.  And that means I have to commit to working toward the same excellence than any person honing a craft would work toward.  Those standards should not be lowered for me because of my brain.

Getting a bogus PhD from a mail-order university and getting a book published as a survivor with little regard for literary excellence both cheapen something of extreme value.  That something is to be known beyond labels.  If I am to be a citizen of the universe with something of value to offer, I don't want that something to have less professional quality than the works of people who are not impaired.  If my stuff isn't good enough to stand on its' own merits, I don't want it to be allowed to stand on the basis of "that person has brain damage so substandard output is excusable."  I'm here declaring that substandard output is not excusable.  Moving beyond my neurology requires excellence, not excuses.

sapphoq healing t.b.i.      

  

It's My Brain, Stupid

You should be satisfied.  You should be satisfied by the crumbs we offer you as we hide behind our desks eating cake.
FUTA.

You should be mesmerized.  You should be mesmerized by the amount of names of big wigs in the field that we toss around in your presence as we engage in mental masturbation in public with no shame.
Unenthusiastic. 

You should be enthusiastic.  You should be enthusiastic about cleaning up kitten shit and then being tested to see if you can remember to initial a place in the notebook where you gave the sick kitten medicine.
Checking my totem.

You should be grateful.  You should be grateful when we offer to get you a ripoff "job" assembling products at home.
Krite.

You should be motivated.  You should be motivated by the idea of listening to a thousand call-in center conversations and transferring them into text.
Enraged. 

You should be awestruck.  You should be awestruck  because we were staff at a community residence for individuals with a traumatic brain injury.
Disgusted.



sapphoq healing traumatic brain injury says: This is Briella.  Who is Briella, you say?  It's my brain, stupid.  But not just and only my fractured brain.  My fractured dreams.  My fractured life.  This is my obsession.  Not to start over again at the bottom rung with your  sour vomitus directions about how to engage in faux-normality.  Your goals are not my goals.  If you want me to invest in something, then give me something to invest in.  If you are not going to help me, then don't hinder me.  Just get out of my way.   I am done with your platitudes.  Your handouts are poisonous.  This is my time to shine.  Get off of the stage.




     

T.B.I. on SecondLife and on-going VESID stupidity

I took a break from blogging for a bit in order to explore SecondLife(trademark owned by Linden Labs)-- a virtual world created by Linden Labs. If anyone is interested, well then you can go check it out at:
http://www.secondlife.com/join/?u=492430f4263844fdb2cb9ef952ebf4a1

or at the potentially less threatening:
http://www.secondlife.com/?u=492430f4263844fdb2cb9ef952ebf4a1

and for those of you who aren't interested, obviously you don't gotta. End of unpaid commercial.


Anyways, my avatar (a little figure in clothing used to represent me in Second Life, thus from here on in will be referred to as "my avie" or simply "I" -- past English teachers be dammed) got to pick a gender and some clothing, went through utter confusion of orientation, and then was deposited along with other newbies at a Welcome Center. From there, my avie went off exploring. SecondLife is total eye candy in 3D.

After flying around for a bit and collecting a bunch of free clothes, I found that I was lonely for human communication. I went to some 12-step meetings (we're everywhere!) and found a few folks there to talk to. I began studying the events notices, joined a few groups, bought a bit of land. I began my first brain-damaged experimentation with 3D building and started going to events and classes regularly.

My avie got a job as a stripper in a club, something for which I make no apologies. The Lindens (money in SecondLife) are good. Real life mate doesn't care what I do in SecondLife. Dancing is varied and automated. The mobility and vertigo problems which plague me in real life are absent there. Plus, like most other avies, my avie is younger in appearance, skinnier, hotter, and has better hair than I do!

Besides exotic dancing and other events, I also found that the Asperger's community is alive and well on S.L. That made me happy and I now have some friends to hang with who do not expect great social feats from me. Many of them have some of the same passions that I do and that is excellent!

And yes, there is a t.b.i. group on SecondLife. We meet usually on Saturday mornings S.L. time at a comfortable and extravagant 3D clubhouse on a beach. The house is situated on an island. There is the ocean right there, a pleasant deck, several dogs, the meeting room itself, and offices upstairs. The man who facilitates the t.b.i. group lives in the States. He is very welcoming. I immediately found myself at home there.

When I told him about the most recent VESID stupidity, he was appalled and asked me if I have a case manager, case worker, or service coordinator. I am not eligible for Medicaid and thus not eligible for the T.B.I. waiver in my state (a situation which pisses me off-- the financial hit we have taken from my car accident and subsequent loss of career has been astronomical) and so I could not navigate the system well enough to get a Service Coordinator. I had tried but nothing much happened there. The facilitator-- also a T.B.I. survivor-- offered to meet with his case manager in order to seek out information for me and will be checking back with me soon. He also suggested that I call the Office of the Aging and the United Way in my county. I hadn't thought of that. More on the hunt for service coordination as it evolves.

The last time I had spoken with the job handler (a young woman who means well I suppose but who is young enough to have a MySpace account under her own legal name) she expressed grave "concern" over the latest two week bout of vertigo. This should not have been news to her or to anyone else related to VESID. It has been documented in my records that I have benign positional vertigo. The benign means it isn't a tumor or anything causing it. The positional means it is outside of myself, that is to say that the room/the world slides to the left. Vertigo means dizziness of a sort. Thus, I am not dizzy. The world is dizzy. I am used to it. I consider my 24 hour vertigo to me similar to allergies. And the occasional attack--where the world dips and spins madly-- to be akin to a common cold.

The attacks are annoying. The singular medication which the doctor demands I take during the worst of the attacks is annoying. The med leaves me able to navigate my home looking like someone who is slightly tipsy rather than totally plastered. There is not much that I can accomplish during an attack. Feeling miserable, I spend a bit more time sleeping than I usually do. Although I cannot do what I used to do, I certainly am not "home watching television." (That is what most voc-rehab counselors assume that folks with disabilities not slaving in sheltered workshops are doing with their days.) During the attacks, I am too miserable to even consider much teevee or much of anything else. So sleeping fills the bill. And serves to keep me from descending into total fatigue afterwards.

Consequently, when the job handler expressed her cloying concern over my latest two week attack I was not feeling a need for sympathy. I was feeling pissed off. And I knew that her concern was a smokescreen for another message. I may be brain damaged but I am NOT stupid. The job handler went on to inform me that until I got a doctor's note saying I am healthy enough to be nagged by her on a regular basis over where I had put in job applications and gotten interviews that the VESID counselor was putting my case on hold. I asked her, "Is the VESID counselor paying for my doctor's visit to obtain such a note?" Her answer was obviously no. "Well then, the VESID counselor will have to wait until I go to the doctor anyways for such a note. Do what you have to do." Shit. The primary care doc does not require me to see him before, during, or after these attacks. And as I've said already, vertigo to me is like allergies and colds.

I thought that would be the end of it until I delivered the note. But no. The job handler called my answering machine twice more. I didn't return the calls because: 1. a close friend who is also an addict was in the hospital and I was busy in a daily fight for her to get adequate pain relief, 2. I figured if my "case" was on hold then that meant that I didn't have to deal with the job handler, and 3. I just plain didn't feel like it. Angry? Oh hell yes. I was angry and I still am. I am not grateful for the crumbs. I can't get Walmart's to hire me, never mind any agency that offers jobs in my previous career. Hell. I can't even get the local newspaper to agree to give me a route. And I intensely dislike cloying concern and people nagging me for information about exactly where I've applied for work. To top it off, I am at the point where I am not sure that I am able to get back to work of any description. What part of, "I don't fucking feel well enough to do anything for four hours a day, never mind eight hours" is not clear English?

I am not a quitter by nature. I am tired of VESID, tired of incessant demands, tired of nagging whiny voices, tired tired tired. The shrink who understands t.b.i. has maintained from the start of all of this foolishness that the original plan is NOT to work even part-time until a 55b/c job comes through with the state. He tells me repeatedly that the 55b/c program expects me to be a fuck-up (not in so many words, he says it nicer) because I will be hired with the knowledge that I am disabled. With the 55b/c program, I will provided with a job I can do and a salary that I can live on. And the added benefit because I will be hired as a fuck-up, I would really have to be outrageous in order to get fired. The problem I am having in my interviews is that it is obvious that I have some serious impairments and no company wants to deal with a new employee who has vision problems, auditory processing problems, non-existent capacity for multi-tasking, can't navigate stairs well (the vertigo), and is at risk for falling in spite of the braces and cane. And let's not forget the fatigue.

So there is SecondLife. I have a sort of goal there to amass enough Lindens to go into virtual business for myself. And there is VESID and the professional and para-professional paid "helpers" associated with VESID. And there is my life and there are my crumpled dreams.