May 6, 2010

From: Elizabeth McClung's "Screw Bronze" blog, without Permission.

Elizabeth is a cyber friend of mine. She has written the following post and she has written a book we should all read titled "Zed". I hope you enjoy her posting as much as I did:

I live a life that no one envies. And if you have a chronic disability, you probably do too.

Was that too direct, or do you want to tell me that this was choice three: #1 – Teacher, #2 – Librarian, #3 – invisible chronic illness even your relatives don’t fully research, believe and want to understand, and living the high wire emotional act of being dependant. Really?

My life is the kind of life where doing what I want, like blogging for BADD will always come behind the intractable aspects of my illness/disability. Life’s natural joy and excitement are now something to be bartered for. And that isn’t really the way things should be.

NO ONE should be born a second class citizen, and no one, particularly while helping keep many medical supply companies/doctors/medicine makers in profit, should become one just for being disabled. Yet many are. We are.

As a society we collectively set our sights too low. We can do better.

See, we have to do better. I have to do better, to learn, understand and being there for people with different impairments/disabilities/illness’. I have to fight as I can so that the quality of life of those with disabilities, and their value within the society will be higher, for those who come after me.

I believe a fully integrated society which values the insights and full participation of those with impairments/disabilities/illness’ is a better society. But that idea is not THIS society.

The problem is us. We blog in BADD often about ‘us disabled’ versus the AB, but the problem is just ‘us’: ALL of us. We all accept too readily the systems’ failure. With 1 in 7 having impairments/disabilities we already knew before we became disabled of a friend, family member, or someone close with a disability/illness and accepted that trying NOT to go through the system is what is important. 1 in 35 get MS. You really don’t know 35 people? Not even at university, or restaurants, grocery stores, neighbors? I have three neighbors with disabilities before I leave my own apartment floor. At university I knew many women with MS and what did I do to change the discrimination I saw directed at them? Where was my DAMN EMPATHY when I saw her struggling with the foot controls of a Dictaphone and heard the head of department discussing ‘how long they would have to keep her on?’

In a JUST world, I should be serving a community sentence, being forced to learn to care, or if I am a sociopath, learn to at least help.

But then are we a society of sociopaths, narcissists or just selfish people? If you want adult PEER PRESSURE, that is what every commercial, homepage and TV show sells. It is hard to have an equal and integrated society when even being facially different brings public scorn (72% of Brits feel that Susan Boyle should never have been allowed to appear on ITV’s talent show. After winning, she was offered a role on ‘Ugly Betty’).

We, collectively need to do better. My province has put on an high bonus for every time a doctor sees a patient with a chronic disease, because so many refused to take them as patients before. So now instead of punishing them for discriminating, we reward them for seeing well…us. Perhaps none of the Doctors or Specialist in BC read the Hippocratic Oath “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” Or perhaps they never bothered to tell the doctors that they would see patients, sick people – that IS the job of doctors, to see people, well, like us. To help people….like us.

What should been done in North America and in other countries is to raise the bar of acceptable standard of behavior for doctors. If a doctor ignores the main source of information (the patient), belittles them, assumes they are lying, assumes they are lazy, assumes because they are female it is: trauma, PTSD, depression, hormones, or ‘in her head’ – a complaint should be taken as seriously as a physical complaint. Because the ignoring of her, and her condition, the delay in treatment for her chronic illness IS a form of delayed physical treatment and well being – as harmful as an assault. They DID harm, and they should, since they seem incapable of having the morals to hold to their oaths, be held accountable. Often, sadly, the entire medical system can be a form of abusive emotional, physical and psychological assault.

I have yet to be able to take a MRI, CAT scan, or any other table test, including radiation injection testing on a table where I able not fully reclined on my back, often unable to talk and breath. Not the rarest of conditions, just one two entire HOSPITALS don’t bother about.

We (society) need to do better.

Having a near 80% unemployment rate for those with disabilities surveyed when the general population is 4-8% isn’t sad, it is an open declaration of the second place status, and social status warfare view of people with disabilities. In the last few hours, I have read three items, two books, and one a major advice column, all seeing the disabled, or those with disabilities/illness’ and facilities as to be ‘used’. Hey, problem with having opposite gender children to find someplace to pee? Then find a ‘handicapped toilet’ to use instead of a man going in the women’s restroom with his girls. The two books I read, both had the disabled/chronic illness characters, the OTHER main character in the book, and both die…..so the main character could learn a LIFE LESSON. Both these teen books were on the New York Times Bestseller List. A new generation learning ‘life lessons.’

We can do better. Where IS the disability awareness fiction section in the juvenile fiction section of the local library? Where is the display? (probably next to the invisible LGBTQI one). But at least LAMDA has the LGBTQI awards? Where are OUR awards, our book awards, our film awards?

But we, those disabled and with disabilities/illness’ are just as bad in ignoring. We find our groups, we band together and we bunker down. How many times have I heard, “Oh, I’m just glad after six different ones I finally found a GOOD doctor.’ – so an ‘I’ll find mine and then, finally, done.’ mentality. When do MS and CFS/ME get together to talk about fatigue? When do Fibro and SMA groups get together to talk about muscle pain? Or cancer and SCI groups get together to talk about dysautomia? They don’t.

Change Society, decrease an 80% unemployment rate, hold doctor’s accountable, change medica with awards and Disability Rights ratings of major corporations? Really? Let’s be real, right? OR, are all these things, as they say, ‘tried hard and found lacking’ or ‘found hard and lack in trying’. I am not asking for those with disabilities to change society, I am demanding society change itself! When most countries have a ‘no child left behind’ program, why then is there a ‘fend as fend can’ for those needing assistive devices, employment or assistance?

I have heard countless presidents, Premiers and Prime Ministers talk about the ‘New Economy’, but never about one where leaving over 60% of 1/6th of your workforce behind is outlined. It just HAPPENS. No. It doesn’t. Not in countries with human rights and disability acts, it doesn’t ‘just happen’ is simply isn’t changed from what happened before. The: “We don’t give a damn, because they are too diverse, too ill, and we are too used to this way to change.”

How is it possible when every family MUST know someone with a disability not to organize for basic things like recognizing that in the same way you get shoes and clothes after an accident, not understsanding that getting assistive devices for impairments are the same? How long until recognizing that the old models of looking at work as an assembly line (created in the 1910’s) and every worker as the same is a LIE. Right now we have the technology to employ as many of those with chronic illness’ and disabilities at the levels they can and desire to work. Right now. Except the very companies that make the software, that run the platforms, the top 500 companies are not rated on how they have advanced in employing numbers of those with disabilities. Not even in the Human Rights index. And the government…..it is easier to simply offer money, then portray those on disability as cheaters. OUCH, the BBC disability website regularly runs news highlighting cheaters caught on disability.

Why?

I went to the optometrist and it was ‘assumed’ I was on ‘blue’ which must be some code for disability welfare because once the worker found out I was actually using employment blue cross, they were rendered speechless.

That same day the paper ran an ad on how a half marathon is fundraising for wishes for people with terminal cancer…because the last director stole $100,000. I am positive he was not disabled, or a cancer survivor. He was just another of those who handle the programs, determine OUR objectives, all without talking to us. . From Crip camps to Respites, there are workers who want to talk to significant others, who want to get home, who want to have a paycheck, but they do not see us as the boss. Yet, without us, there is no job. We ARE the job.

I asked how often the care feedback forms came and when there is government review and implementation. I was looked at strangely. The managers, the RN managers, the health care middle managers might have feedback forms to give to government about client care….but what does that have to do with me?

“Errr….I’m the client.”

I am more than my wheelchair, I am more than my breathing device, I am more than my illness, my disability. And so are all those others out there. So are all those with invisible disabilities. So kick it in gear society, kick in it gear about real equality because we all know someone, and we all know the stereotypes (if we didn’t we wouldn’t keep saying, “Kill me if I ever get like…..” – what? Like me?). Stop trying to find the loopholes to the good doctor, the small good parts of the system and accept that it is broken.

Burn it. Rebuilt it. It wasn’t an accident that every wheelchair user in hurricane Katrina was killed. I was fascinated, so I watched 4 disc documentaries, washed away, left behind, left to die, left without medicine and without care for days…in a country that calls itself ‘The World’s Superpower.”

The world is seen as a comic book, according to language. But if a ‘power’ isn’t used to help (much less a ‘SUPER power’), I would kindly say, “What use it is?” But what I think is, “Well, isn’t that what separates the Heroes and the Villains?” It IS a choice.

May 1, 2010

Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)



We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do to be able to control himself and his seizure activity. Reality for persons with E. is that "compliance" or the taking of one's medication as ordered, often bears no relationship to any specific level of seizure control. In other words, just because I take my meds is no guarantee that I will stop having seizures.

Guilty of both a misunderstanding and a misapplication of the term “controlled”, we are seriously wrong about the epileptic person to whom the term is applied and about the abilities of medical science (e.g. pharmacology) to meet our social expectations.

Most of us make this mistake honestly enough. Our society, like many others around the world, places a premium on moderated behavior. We refer to the act of moderating one's personal behavior as "self control" and identify the strength of character necessary to make such a personal exertion as "willpower". When we think of someone “losing control”, we think of an individual who stubbornly refuses to make use of his willpower to control himself.

We apply this same train of thought to a seizing person with E.. We view his act of seizing as somehow related to his willpower, character or intent and equate it with either disobedience or rebelliousness. Acts of disruptive misbehavior in a public setting, e.g. temper tantrums or seizures, are unacceptable to us and people who put on such displays are “out of control”. Having to witness out of control behavior makes us uncomfortable, distresses us and sometimes angers us.

A few years ago, my husband and I went to visit a friend in the hospital. While sitting in her room, I had a tonic-clonic event, i.e. a convulsion. Nurses were summoned, my husband attended to me, and when he asked them for assistance, they called security. Later, when we were leaving the hospital to go home, the nurse pushing my wheelchair leaned over to me and asked whether "...we had forgotten to take our meds today?".

As insulting as this sounds, it is all too common a response. Persons who should know better by virtue of their professions cannot resist the notion that somehow persons with E. are simply seizing to get attention. The notion of impudent and willful seizing is utterly ridiculous.

Still, there is a desire to believe that the controlled epileptic is a possibility. The idea persists among professionals and non-professionals, as well as among persons with E.. The differance is, persons with E. understand the distinction between the medical application of the term "controlled" and the ordinary use of the word. Too many professionals continue to insist on blaming the patient, rather than admitting that the treatment is insufficient.

The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.

But what authority are we speaking of and where did it come from?

In 1951, sociologist Talcott Parsons tried to describe formally what ordinary people already seemed to be acting on at some level. Parsons published his Sick Role Theory, and in it he described two rights and two obligations apparently binding for those who become sick in our society. They are: 1) that the patient is exempt from his normal social duties because he is ill; 2) the sick person is not responsible for his illness; 3) the sick person should try to get well; and finally, 4) the sick person should…cooperate with his physician.

Parsons' theory has been worked and reworked by sociologists to try to take into account the variations not accounted for in the Sick Role Theory. Parsons wrote what many plain folks already upheld: if you are sick, you aren’t to blame and you don’t have to work if you try to get well and obey your doctor, nurse, pharmacist, etc.

Here is the seed of the authority we have been searching for in this piece: an apparent bargain between society tolerating the sick so long as the sick respond by respecting our authority and being obedient.

But, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?

In 2002, I read a copy of an email exchange between university administrators concerned with how best to handle students with E. who persistently frightened faculty and fellow students by seizing on campus, sometimes during class meetings. Shamefully, the initiator of the exchange was both a Doctor of Pharmacology and of Nursing and should have understood better than anyone the meaning of "control" as related to her students with E..

She queried her colleagues in cyberspace, seeking to know if any of them were experienced with this sort of situation. The replies were varied, but most offered that the best way to handle this sort of disruptive willfulness was to treat it as a problem of student conduct or behavior and not one of disability. They suggested that an "involuntary medical withdrawal" could work constructively in the situation, and in the student’s best interests. The conspirators pointed out that this was a good strategy for skirting the Americans with Disabilities Act, as well.

A few of her respondents mentioned taking such actions at their own universities, regaling one another with their success stories: one student eventually transferred to another university altogether. Problem solved.

What they all seemed to be unaware of was that twelve years earlier, before the email exchange took place, a woman with E., named Barbara Waters, gave testimony before Congress about her own situation at a state college in Massachusetts. She was being harassed and discriminated against by administrators at her college, who wanted to use the tactic of "constructive dismissal" to force her out. She testified she was about to be expelled from school: her college administrators told her that her seizures were "disruptive" and that her presence on campus was "considered a liability" to her school [2 Leg. Hist. (Barbara Waters)].

Thanks to Barbara Waters and others for speaking up. The results have been good for us all because, since 1990, the discriminatory and harassing tactic of “constructive dismissal” is illegal.

The meanings contained within our use of language often include unstated assumptions. Delving into those assumptions requires our participation. To change how people feel about persons with E., we have to be willing to open up and share our knowledge. It is the only way to dispell harmful and simple-minded understandings from either remaining or becoming widely held social expectations.

April 8, 2010

Tell Me About Yourself...(my 1st posting, reprinted)

It is not an easy thing to talk about one'’s family. Conflicts abound and committing fact to paper seems to fall short of the true experience of family life. Each member of my own family is more significant and more powerful than the basic relationship sketch. This is because I am a product of the contextual elements of my life among my family and from within my disorder.

I had two parents. My mother was the most beautiful woman on earth and my father the world'’s most handsome man, and I belonged to them.

Their first child, my older sister, was heroically disabled: the circumstances of her birth were remarkable enough to gain her press coverage for an entire year. Anyone and everyone could see that she was blind and her condition pulled on the heartstrings of them all. I was three when my disability surfaced. No one could tell, unless I was in the violent throes of a convulsion, that anything was amiss. My family overcame their distaste and fear of my epilepsy and cared for me, with the caveat that I would outgrow it one day, if I willed it strongly enough.


A remarkable feature of my life both as a child and as an adult is anger. Not the casual anger that gives expression to the mix of frustration and pain as when one strikes her thumb with a hammer, but a flickering, tentative wisp of emotion that ignites over time and across circumstance toward an explosion, which leads inexorably to oblivion. Owing to the nature of my condition, epilepsy, and the location of its focus in my brain, the anger I sense is often a warning for the onset of seizure activity.

As the sensation grows, I feel an impending doom, a kind of darkening on the spiritual horizon. It can be overwhelmingly intense, stimulating morbid thoughts so that even as a child I knew what it was to contemplate suicide; and I have been long terrified that I would one day relent in the throes of such thoughts. The nearer I come to the explosive event itself, the keener the inconsolable sorrow and sense of desolation become. And then, when the pressure has sufficiently built from within, an explosion of some kind occurs.

Commonly, it is the convulsive action of a tonic-clonic seizure. Sometimes it spends its built-up energy in a less harmful way, as an uncontrollable tremor, a momentary lapse of consciousness or a strong sense of deja vu.

Regardless how the energy spends itself, the end result is the distortion of my life's continuity.

I am certain now that I adapted to living within this distorted reality: I employed tricks of personality and intellect. I learned to read cues in conversation and fill in the empty spaces in the continuum for myself should I lose consciousness briefly; to ask clever questions that would provide me with answers if I didn'’t know how to respond or, to glean from the questioner and his question some nugget that would allow me to make an apparently insightful remark to someone else in the room---in other words, stall, distract, and delight. In so doing, I could only be accused of eccentricity, but never disability.

I transformed myself purposefully, at the age of twelve years, from an introverted child to an extroverted teen so that I could brush away any lingering mark of epilepsy. The urge to transform myself into a perfect being was motivated by a strong sense that I needed to vindicate my mother from the disaster of having two disabled children.

This was born in me one moment when I was about four years old. My sister'’s worth as a human being and my secret understanding of my own worth, as well, was delivered as a casual comment between two women walking opposite my mother, sister and I on a public sidewalk: "“Oh, look how sad...if I were her mother I would have prayed God she had been born dead."

My connection to my mother was primary and endowed with magic. Not fairy-princess magic, but the magic of mythic action: my mother was the one, I believed, brought me back from the terror and oblivion of each convulsion I suffered, and I further believed that without her there to bring me back, I would not return to consciousness. I would remain trapped inside an unconscious blackness until I died.

The two women'’s exchange began slowly to erode my confidence in my mother'’s love and loyalty toward me. If these women from the outside world felt that way, then did she? Did she pray that God would take my sister and I? Did she pray God to take me? Perhaps she did: there was a third child born to my mother and father, also disabled, but she did not live beyond six months of age. She died in our house and everyone said she was better off now and with God. Her death seemed to underscore for me the possibility I was treading on very thin ice as a disabled child.

It had been promised to me that if I willed it strongly enough, I would shed this condition myself. Even my mother, who truly knew better than did the rest that I would never be rid of my condition, suggested that I might try harder to “will away" the onset of convulsions. But, I never seemed to try hard enough and so, in the end, all I could feel about myself was that I had failed. Solace for me was to simply not talk about it any more with anyone, except to mention from time to time that I had once had epilepsy when I was a child.

I was 16 years old when a small town doctor told me I had been cured, because I had no convulsions for over two years. Even when the convulsions returned before I turned 17, like my family, I dismissed them as non-events and clung to the notion I was over the epilepsy for good.

If I could but make the world believe I was perfect and normal, all would be secure and safe. Certainly, the exchange between the women on the street was a powerful one and told me that if I was to feel safe in my own home, among my own family, then I must not be disabled. Since my sister had a value to my mother by virtue of the sympathy she garnered, she would be fine, as long as her existence was an anomalous one. But it was up to me to accommodate and adapt out of my epileptic state. If I had the will, certainly, I could do that.

The truth is, I cannot do it.

I am epileptic. I am not a person with epilepsy, nor am I someone who happens to have epilepsy. My memories are colored by it, just as many of my memories have been obscured by it. I cannot recall a time in my life when my epilepsy was not a part of me: when it did not add to or detract from each experience, decision or act, and it has influenced every step of my development as a human being.

There are still those who feel I am passing as disabled, because I appear whole. They see nothing at all wrong with me. Others believe with an equal conviction that I am malingering, nursing the claim of a disability to achieve some secondary gain from the status. Neither is true, and yet I have experienced this suspicion since I was a small child, whose only society was the family circle.

Even as I aged and moved into conventional society, the features of my childhood experience tagged me: that singular comment from a passing stranger on the street remains with me, as does the distinction between my sister'’s heroic blindness and my ignoble epilepsy. After all, there were no medications that would or could be offered my sister to remedy her blindness, but I had only to take my pills and I might be cured.

March 17, 2010

A Purple World is a Better, Friendlier World!

When Cassidy Megan was nine, she wanted to do something fantastic for folks with epilepsy. She knows first-hand what E. is like, because she shares epilepsy with the rest of us. She knows how lonely having E. can make you.

In the U.S., we all know that November is Epilepsy Awareness Month, but having a day in springtime to elicit support is a wonderful thing.

Spring is the time when the buds open, warmer rains fall, and life begins anew... it is also a time when we can open up to others and show them we support them in their lives.

Perhaps the sight of hundreds of people wearing purple is a kind of emotional jolt to those of us with E. who understand it's meaning. The notion that so many others are willing to help us out of the closet and welcome us into society as we are is a most generous way of giving.

By offering to us even a silent but deliberate show of support, many of us can stand a little taller and breathe a little easier. It is as if the whole world has come out for a day to say "we are all your friends".

Thanks, Cassidy, for having such a good idea and sharing it with the rest of us. Because of you and all those willing to wear Purple for a Day we can say that a Purple World is a Better World!
It brings us all closer to one another.