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.

Thoughts On Adaptive Seating

I see my Adaptive Seating Specialist tomorrow to finalise the new set of wheels. It has taken almost two months to get to this point, largely because of medical ups and downs on my part. I kept hoping against all odds that the medications, physical therapy and new bracing would somehow work in concert to ease the increasing pain and allay the damage to my medial knee. No such luck.

Surgery is not a good option either because the replacement joints are not made to withstand the stresses put on them by the altered gait and biomechanical issues of a mostly ambulatory adult with Cerebral Palsy. Indeed, surgery of this kind for me is a crapshoot. Once I do it, I'm doomed to repeat it as there is no guarantee of survivorship of any artificial joint. An examination of current medical literature confirms this, along with the fact that most of those with CP who undergo joint replacement are full time wheelchair users.

The arthritis and damage to my ACL developed over time due to the CP, according to doctors and physical therapists. Never mind that I have tried several times over the last few years to launch meaningful discussions regarding joint conservation and assistive devices. My docs pooh-poohed the idea with statements of my possible early demise, development of obesity, diabetes, heart disease and a litany of other ailments. Meanwhile, the wear on my joints continued and I now have the knee of a seventy-year-old, arthritis in other extremities and chronic pain that varies by degree and is only held in check by prescription anti-inflammatories that my doctor informs me kill more people in the U.S. annually than does HIV due to the onset of internal bleeding. I am not yet fifty.

Only after the knee went wonky did adaptive seating gain favour with my doctor, who it seemed, suddenly realised following my allergic reaction to medication, and several falls because my leg was so swollen I could not stand, that I did really need some help.

The Adaptive Seating Specialist debunks the idea that wheelies die prematurely from a host of conditions, stating instead that mobility from a chair gives users the ability to stay active, albeit differently. I know some who are active in sport, others who dance and one who lives to race. I just want to be able to enjoy the park, get some fresh air, spend time with friends, care for my pets, attend public events, enjoy my synagogue, and find a job in my field without wearing myself out.

Those of you who have done and continue to do these things, please feel free to offer suggestions or comments. I am currently researching pain control as well. The chair is lightweight titanium with power-assist wheels. I'll know more after trying it out tomorrow.

Action Heroes: My View

My first action heroes were Superman, Spiderman and Wonder Woman, Batman and Robin, and Samantha, the Good Witch cum housewife on sixties series Bewitched.

Found at various times across my early childhood courtesy of television in the U.S., my interest in each waned with each ending visit to stateside relatives or friends as I returned to the small Latin American country in which I was raised and resumed watching Spanish telenovelas as well as old English language movies from the thirties, forties and fifties that constituted most of my television adventures at the time.

That these action or super heroes neither resembled me nor reflected much in my daily life did not become a matter of conscious concern to me until my first year of undergraduate college when I took a course in feminist media (actually the lack thereof at that point) and de-constructed the messages each was sending and the cultural representations each stood for. Of the bunch, Wonder Woman appeared the most feminist for the time, although given her sexpot garb and tendency to flirt, that wasn't saying a lot.

There were no intelligent and powerful female action heroes, just as there were none living with any sort of disability and none of colour. Having long ago abandoned any hope that present-day television would reflect anything other than the needs of its advertisers, I no longer watch much.

In an ideal world, whom would I consider a proper Action Hero?

Persons of colour, women, those living with disabilities, those representing the wide spectrum of sexuality, religion, compassion, the arts, medical and community expertise. These varied individuals and collectives would share the desire and fortitude to confront and surmount prejudice and supplant hatred or ignorance with thriving communities, positive relationships, creative and business endeavours and other noteworthy activities, as many have done, and continue to do, often against great odds.

In an ideal world, doctors, friends, associates and even one's intimates would cease to suffer from or create abject ableism, further stereotypes or lack awareness of history, culture, sport, music or other elements of life. There would be no concept of "Minority" because any differences would be openly and positively celebrated.

One's medical differences, for example, would not engender pity, or a social mileau in which they were made to feel de-humanized and nothing more than a collection of symptoms. Persons living differently-abled lives could work, play and navigate both public and private spheres without fear, have equal access to buildings, goods, services and transport, attend community and political events with adequate space, seating and access and achieve economic stability in the marketplace.

My Action Hero would be a person of both soul and heart, razor-sharp wit, and gentle demeanor towards children, the aged, animals and his or her companions, with ire reserved for only situations or people undermining another's rights, place or humanity.

Do I know people fitting this description??? You bet I do, and many of them are friends and associates in real life, as well as a host of bloggers I am proud to be counted amongst.

Thank you all and may none of us lose hope or the will to make the world a better place.

Welcome to Life at Full Tilt...

Text and photo by Full Tilt
April 7, 2009

Life at Full Tilt is a new blog. It will contain some photos, poetry, ruminations on life, news of the day, disability issues, cats, reflections on my eclectic taste in music and books and quite possibly a bit of nonsense as well. I am a mid-life woman, disabled since birth, trying to sort out the changes in mobility in the process of becoming a wheelie, dealing with health, work, animals, friends and quirky family.

I began life as a blogger in January on another blog, but have decided to gain entree into the realms of disability bloggers after reading many and merely lurking. While several bloggers have been generous in responding to my individual e-mails, I have decided it is time to write and discuss in a more open forum, offering this as my first post under the moniker Life at Full Tilt.

Why that name??? Because it aptly describes the times and personality of the blogger behind it. While sorting through thorny issues is a consuming task for anyone, I have found a level of humour, compassion and understanding amongst those who deal with and write about disability in its myriad forms, and life on wheels, that has made me feel comfortable in the face of the world's ever-present ableism and ignorance.

You will note that this blog is still under construction, but your comments are welcome and thanks for visiting. I am currently working on an upcoming post for the Disability Blog Carnival hosted by Yanub on April 9.