Beautiful Afternoon...

The extremes of weather/climate change are very intense here. Months of drought followed by ten days of rain, which unfortunately, signals the beginning of hurricane season, a six-month span most who live here could do without.

That said, this afternoon is beautiful. A dry, sunny and not overly humid respite from the rain. The felines reclining on the screen porch haven't a care and for a moment, it is easy to forget the problems weighing heavily on many of us these days...

If only there were more days like this one.

Beaurocracy Strikes Again...

I spent most of today, rainy and overcast, on the telephone between the medical clinic and the adaptive seating specialist trying to solve the mystery of the missing LMN (Letter of Medical Necessity), which the vendor for my theoretically upcoming new chair called to inquire about last week.

After obtaining and sending the vendor a prescription, I discovered that the Adaptive Seating person had sent the LMN to the doctor almost one month ago but had as of yet no response or signature. Both the signed LMN and the prescription are required to go with additional paperwork from the vendor to my insurer, so this almost-month-long delay has been costly in terms of time for me, wear on my wrists and general waste of energy.

It turns out that the mysteriously missing LMN was sitting unopened in the doctor's mailbox, while the doctor is out of the clinic. The nurse and administrative assistant found it in short order following a call from me today. The Adaptive Seating Specialist, a consummate professional, has been notified, and the doctor's staff was also professional and courteous to call me and let me know the document had been located and would be signed by the doctor's colleague straight away in order to avoid further delay.

I can only hope dealing with my insurer will be this easy. (All puns intended).

This leads me to ponder the creation of our behemouth and often lumbering health care system...

-When and how did everything become such a beaurocratic nightmare?
-Are the industries supporting this system so over run with lobbyists that our politicians kiss their behinds or cave under immense pressure?
-Will things improve if we adopt a single payor system similar to Medicare?
-Whatever happened to the concept of "patient-centered" care? Has this been irrevocably lost or did we ever have it in the first place?

I can remember a pediatrician making a house call that resulted in a diagnosis of measles for yours truly, but that was sometime during the Ice Age...

Sarcasm aside, if I can get on the phone and straighten this out, I and everyone else reading this can e-mail Mr. Obama, our senators and congress persons and demand change beyond pandering to lobbyists. We can also let our doctors know we don't appreciate being "lost" in a pile someplace while our joints worsen with wear, and thank those who really work to help us out.

I intend to make Obama on down aware of these and other situations by exercising both my pen and the power of free speech, reminding each that while in their larger views I may not matter, my vote certainly does.

Blog Award And More...

I am the stunned and happy recipient of a Blog Award courtesy of Wheelie Catholic, who in my estimation, writes prolifically and far better than I on myriad issues of concern to those of us with disabilities. Thanks for the vote of confidence, Wheelie. I will give some thought to those I want to pass the award to as well, placing their names in a future posting.

Life At Full Tilt has been interesting. In the last several days, I've had an unexpected conversation with my new family physician, who prescribed a compounded ointment containing medication for the tendinitis plaguing my wrists. Dr. feels that I should begin looking ahead and trying to plan for the day when I might need to reduce or quit working, look into some services I may be eligible for that provide in-home assistance and seek information from Vocational Rehabilitation in my state so that I can work effectively until that point is reached.

Given the state of my knee, my age and the corresponding changes in my mobility, these are relatively good and thoughtful suggestions from an MD who has a special interest in serving those with disabilities and in teaching med students to do the same.

Dr. doesn't realise that I have been plagued by long bouts of unemployment punctuated by either underemployment or grad school, and that my previous experiences with VR about fifteen years ago never culminated in a job I did not find myself, with which I remained underemployed for my education and skills, though I was able to pay bills if I lived frugally. From others I know, these experiences are all too common. My previous VR counselor informed me that there was nothing that could be done for me from an educational perspective because I was already a college graduate with a masters degree. Having since attained an MLS, I am almost sure the answer will be the same, but I will make and keep an appointment anyway in case any other suggestions arise.

Seventy percent of persons with disabilities remain unemployed, with underemployment problematic for individuals as well. Broken down by gender, the statistics are even more alarming, with seventy percent of disabled men and ninety percent of disabled women wanting to work but unable to find a job. All things considered, I have been relatively fortunate. Having degrees has opened doors that would have otherwise been closed to me entirely, but there is still much to be done to improve the employment situation for persons with disabilities, a subject of future posts here.

In my case, I've worked in a variety of jobs, written articles, essays and a book, acquired other skills and focused my time in the most recent graduate endeavor on the efforts of libraries, primarily public and university, to provide services for persons with disabilities and the education of the librarians serving them. Additionally, I am completing a special collection project for a specialised library, functioning as the project archivist, something unanticipated and which I hope yields a paid position somewhere once the project is completed. My progress in this area has been hampered by ongoing medical issues, consequently I remain concerned over the employment issue. I am also on the fence about going on for a doctorate at this point.

The home front has calmed a bit as my cats are adjusting to medication and the fact that a portion of the apartment is off limits to them all the time now. This is allowing me to catch up on much-needed sleep and helping tremendously with my energy and outlook.

Attention Walmart Shoppers...

After slowly acquiring an eclectic list of household and personal items that needed replacement yesterday, I knew I would hie off to the nearest discounter in pursuit of all things in one trip. That meant Walmart, a store I loathe for its business practices, and visit only rarely.

The next issue was whether to leave my folding manual at home and risk looking for an in-store scooter. Opting for the scooter because the manual chair, dubbed Bertha Butt, is a bit heavy to lift in and out of an average trunk, my adventures Walmartesque began with an employee on an apparent smoking break outside the store. When asked whether a scooter was available, he rolled his eyes and shuffled off, stubbed cig in hand, returning several minutes later with a specimen that looked as though it had been left in a ditch to die.

Undaunted, I climbed aboard and slowly made my way in, not because the scooter lacked speed but due to the crowds of shoppers coming in and out and the fact that most of those on two legs took no notice of the rather square, squat, motorized vehicle driven by yours truly. Had I a horn of any kind, it would have certainly expired from over use.

After only a short distance, I was stopped by an older gentleman in the traditional blue to-die-for Walmart vest, who requested that I go sit in the nearby snack bar while my scooter was put on a charger. When I explained that the scooter was in fact charged, he asked why I was stopping and starting. I gesticulated towards the throngs of two-legged humanity swelling the isles and exits with nary a glance at me. He then scratched his head, shrugged his shoulders and turned his back, signaling that our less than fruitful conversation was over.

Winding my way through the increasingly cluttered and disorganized sections of the store took about for times longer than it does when walking. Why??? Stuff is everywhere and when one isn't dodging people with no sense, displays and stacks of items, many of which are disarrayed or unreachable, loom large, threatening passageways. The lines to pay and leave were no better, and had a friend who accompanied me not directed traffic in the parking lot, we both might have been creamed by a woman on a cell phone driving an SUV.

This less than leisurely experience consumed two hours of my day, minus travel time, and sadly, is not uncommon, as other bloggers including my friend FridaWrites, have pointed out. It is also unfortunately not as safe as it might otherwise be.

In this instance, the retailer could do several things:

-Widen isles and organize merchandise so that it can not topple over.
-Hire and train more help to keep lanes clear and lines moving smoothly.
-Utilize a paging system announcing that shoppers should clear lanes for motorized scooters.
-Ask that local police or security patrol the parking areas for unsafe drivers and provide marked crosswalks and signage so that auto users understand that individuals in other wheeled conveyences have as much right to cross the parking areas as drivers do.
-Provide better customer service training to employees, including such things as making eye contact when speaking, whether or not they are speaking to a TAB or a disabled person, responding politely, and encouraging their walking customers to be aware of carts, scooters and wheelchairs.

Do I think these things are likely to occur??? Not without a lot of pressure, and even then, not likely. Being persistent and an advocate (read agitator often) I will not give up as I do not like risking life and limb in pursuit of toilet paper.

BADD 2009: Reflections On Language

The first time I remember hearing the word "cripple," I was five, and subsequently landed a punch to the face of my verbal assailant. Hauled into the time-out corner by an embarrassed teacher, I was told that punching someone was wrong. When countered this with a list of terms regularly hurled in my direction from the other students, including "retard," "metal legs," and "freak," the teacher, though visibly red-faced, remained silent.

Bright and verbal, I cursed correctly in two languages, and used my impressive vocabulary of multi syllabic adjectives, verbs, nouns and adverbs with such unyielding precision that "dictionary" soon replaced the epithetic "cripple."

Having no disabled peers with whom to relate made me aware of the nuances of the able-bodied. Their body language, facial expressions, stares, avoidance of eye contact, awkward silences and whispers in the halls became second nature and I developed a reserved armour that only those close to me could see beyond.

Undergraduate school brought me several disabled friends and less wariness. It also gave rise to new and unfamiliar verbiage. Words such as gimp, crip, TAB, and (dis)ableism, commonplace amongst persons with disabilities, offered new perspectives and ways of speaking about experiences. The slogan, "Disabled and Proud," brought tears to my eyes the first time I saw it on a banner.

Today, at almost fifty, I still wince at the word cripple and can't force myself to use gimp in conversation, despite the efforts of many to re-claim and use them more positively. Both are simply too emotionally loaded and fraught with unpleasant associations for me. Sadly, I am not alone. While words wound, they also offer possibility for healing, but not without first examining how we talk to one another and about each other, a point made by several bloggers quite cogently in the last months.

Each of us is more than the medical jargon and diagnoses attached to conditions we may live with, and we are also more than the world at large often believes us to be. If we want to be disabled and proud, we must empower ourselves and those who will follow and celebrate our arts, dance, music, sports, sexuality, community and all other aspects of humanity.

Of Odd Cats and Wristly Pains...

I live with three felines. Each was a stray or feral and came to me through completely unintentional circumstances. The oldest of my cats, a female Korat, died last year at fifteen as the result of cancer. Since her death, her companion cat, now thirteen, has been acting odd. From initial conversations with the veterinarian, it appeared that this high strung Siamese was in mourning. She is taking anti-anxiety medication, which has only minimally helped by reducing long bouts of nocturnal yowling.

As months have gone by, she no longer sleeps in bed with the other cats unless I am not in bed, and spends most of the night jumping from a small bedside table to the floor and then to my desk, again and again, knocking over lamps, computer speakers, books or whatever else she encounters.

I tried keeping the single bedroom feline-free, only to be ultimately thwarted by the incessant complaints of the other two cats, a large male tux and a black cat that otherwise makes few sounds. Additionally, a product called Feli-way, which is supposed to mimic happy cat hormones, has had little effect on the nightly din.

My attempts to leave the bedroom door closed during the day as well, thus denying entry to all the cats produced enough caterwauling that the upstairs neighbors gently complained of the noise. Since all three have chronic health concerns that reduce the likelihood of adoption, and I do love them, I've been pouring over cat behaviour tomes to little avail. Medical testing on the Siamese has offered no explanation, leading the vet to suggest that the problem is behavioural.

Playing with her before bed to tire her enough to sleep has also proven futile. She remains in awe of my folding manual, fleeing beneath the bed to avoid being evicted from the bedroom.

I have resorted to sleeping in the living room, closing the bedroom off and leaving her to her own devices while the other two cats and I nestle on the futon. Unfortunately, it is not as comfortable as the bed I've temporarily surrendered. Consequently, I am sleep-deprived, on the verge of a cold, my animals are stressed and the veterinarian at a loss. I have also apparently strained my wrist hefting my large male tux...

Anyone having suggestions or experience, feel free to comment.

$11,000? Wow!

I blanched when I heard that the new version of the power-assist wheels my Adaptive Seating Specialist wanted me to try out sell for $7000.00, bringing the total cost of my chair to $11,000.00.

Long-time wheelers know that this is not out of line, but for a newbie like me, sticker shock set in with the realisation that in the days when I drove, I never owned a car that cost that much.
I was only somewhat mollified when the Seating Specialist added that if she thought that this was impossible to obtain for me courtesy of my insurer, she would say, and additionally, she is familiar with the appeals process. It will be about a month before the manufacturer and their company representative hear anything regarding approval, and everything pertaining to my need has been documented.

I am unsure whether to be happy or keep my head down and prepare for appeals.