July 24, 2008

Who Owns Me?

There is a feature of disability that has to do with body integrity and ownership. For many of us, it stems from the multiplicity of medical tests and exams we experience over a lifetime that leave us feeling much like a slab of meat. It is a kind of medical victimization, if you will. It is, certainly for many, a traumatic experience

Laid out, exposed and feeling helpless at the hands of doctors and medical staffers can be nightmarish for many of us. As we mature, it is not unreasonable for us to consider the question: Who Owns Me? 

The physician-patient relationship has all the components of a power relationship. 

And, as is true of rape trauma, the patient/victim often feels the brunt of the effect, especially when the experience has been a bad one.

Bad because of fear and pain. Bad because of a sense of helplessness. Bad because of a sense that the experience can and will be repeated over again many times throughout one's lifetime.

So---'who owns me' becomes a gateway statement for one seeking healing from trauma and a return to a sense of personal agency and control over her body integrity and ownership. 

In some circles, the body is discussed in terms of property ownership. 
C. B. MacPherson (legal scholar) suggests that the concept of property resides and encompasses the notion of property as rights. Meaningful among males, certainly.

But, when one encounters a feminist perspective that points out property as inclusive of chattels, one begins to intuit a remnant concept of a woman's body and parts as somehow still within the male property/rights provenance.

Do we still think of men as rightfully possessive of women's bodies? Phyllis Schaffley does.

Does this notion transfer to the doctor-patient relationship, when the  doctor is male and the patient female? Is this one source of the nightmare some disabled suffer from? 

I don't know.

But I might suggest that the gender of the specific doctor has little bearing on the sentiment because the institution of medicine and its practice remains oriented to a masculine sensibility. Dissent from patients is often perceived as a cue for an aggressive or even bullying response from doctors---male or female. So, disabled patients, at their most vulnerable, often feel reticent to dissent from a physician's declaration of necessary testing or treatment.

I have learned, over the course of my lifetime, to take Nancy Reagan's advice when I am so moved, and 
'Just Say No'. 

Susan Brison contributing to Feminists Rethink the Self, Diana Tietjens Meyers, ed. (Boulder, CO: Westview Press, 1997) offers:
Reflecting on her own experience as the survivor of violent sexual assault, and drawing upon the narratives of holocaust survivors, ... [Brison] interweaves a phenomenological description of the sense of loss of self experienced by survivors of trauma, with philosophical analysis of different conceptions of selfhood-the self as body, the self as constituted by memory, the narrative conception of selfhood, and the autonomous self. The experience of loss of self, she contends, affects all these modalities of selfhood, showing the importance of each. Brison's account of self-recovery also brings out the inherent relationality of these modalities of selfhood-if others can violate a person's sense of bodily integrity and can radically undermine her sense of self, it is yet only through others prepared to listen to her narrative that the survivor of trauma can re-make herself. 
Brison's essay should be read as reflective analysis, rather than as an argument for a particular thesis, according to Catriona MacKenzie, McQuarrie University. 
And so it would seem that the isolation most of us with E. have experienced harms us and keeps us from healing. All the more reason for telling others about our experiences with epilepsy. Communication, socialization is vital to our improved mental and emotional well-being. 

It can also alleviate our concers over such haunting questions as "Who Owns Me?" 

July 13, 2008

Education as Equalization.

When one begins to consider the track of her life, one can only come back to a single question: how can I become equal to the task that is, that will forever be, my life?  I know when I was young, it seemed unfathomable to me how one would know how to do things correctly, successfully, as an adult. For instance, how would one get money to pay bills or buy food? I did not quite comprehend the connection between working and money. I knew people worked "for their living", certainly, but just how did that work translate into living. The notion of growing up was really frightening to me.

I suppose now, at 55 years of age I can say I get it. That doesn't mean I am any good at it. Seems that one of my deficits has to do with money. 

Really, not a joke. I have an intellectual deficit when it comes to comprehending and using money.

The one fascinating thing that has helped me most as a female epileptic has been the socializing, equalizing benefit of a college education. Sure, it didn't teach me how to overcome my deficit with money, but I do have a better comprehension of it than ever before and, I can admit to my intellectual deficit for what it is, recognize it, and adapt. 

College isn't an event, a professor told me. It is, instead, a process. You can access this process at anytime during your life. It doesn't have to occur at the end of high school---it can come when you are much older than that. In fact, as a former president of the Non-Traditional Students Organization for Chapman University, I can tell you with certainty that less than 50% of all college freshmen are "traditional", meaning that they come directly from high school with no break in between. So, a majority of college freshmen belong to the category of American adults who engage the educational process later in their lives. This makes them able to handle the challenges well and it makes them more likely to dedicate themselves to the process they have engaged, to maximize its benefits.

I know from personal experience. It is true. I wanted to succeed and I did it! Now I have a B.A. and I have re-engaged the process to pursue my Master's degree at the same school. 

College affords us tools we wouldn't ordinarily have. It allows us to achieve without the pressures of competition. In school, competition is only with yourself, unless you inform others of your grades, no one knows or has the right to know. So, you are only competing against yourself. 

It is a unique situation. It gives you time and space to breathe, to read, to learn, and then to incorporate what you have learned in a way that will make sense to you and serve you. 

Education allows one to network. As an alumni, there are connections you can use to find work, get housing, etc. 

But, more than anything else, it arms you for the rest of your life. Your degree or degrees belong to you alone. They are testament to your work and fulfillment of requirements. They give you an equal footing with non-disabled in the work place. They afford you a means to become socialized within a community of scholars before you take on the community of workers.  This enables you to grow stronger, to have a psychological toughness from the experience of knowing you can take on a complex task and succeed at it.  For example, my "psychological toughness" comes from being able to refute, if only to myself, that I am not intellectually inferior because of my E... And yet, it allows me to be fearless or at least less fearful of the residual deficits I encounter that are a part of my E.  I am, as an educated woman, able to assess my condition, communicate it more effectively, and understand myself better. 

This has helped me immeasurably. 

From my perspective, it is vital that as many disabled as possible attend college. There are a million ways to approach it, whether it is by community college first, then transferring to university... But, the one thing to keep in mind is that it is a source of power we cannot do without. If you are out of school, reconsider going back to school... if you are in high school, make plans to go on to college. 

Each of can use the extra armor higher education will provide. Take advantage of it, go for it! Allow yourself the advantage of a an equitable opportunity in society. The world is waiting for you to make your contribution-you have it in you to give!

For Disability Carnival #41: "Death Becomes Her" Theme

I believe that Death rides in a carriage drawn by six matched horses. He rides from behind the Moon in the night sky and we can see him coming because he leaves a trail of mist  behind him.

I also believe that we cannot evade Death, but that some of us are Death’s Familiars.

Growing up, I was suspected of being magical and of  demon possession by one grandmother, and of being angelic by another. I am someplace in-between and mortal.

I craved the Church and later came to it. I am blessed by my relationship to it and call the saints, friends. When I was younger, they travelled with me on long and short journeys. 

I live in the hope that they will each remember me if I descend into the oblivion of seizure and am unable to climb out of it. 

I believe in amulets and charms, spells and prayers. Perhaps I am a heretic, but I believe that the imperfections of my faith have already been absolved as they are a part of my Epilepsy.

I have left temporal lobe E. and it makes one curious about the mystical elements of life and Death. As a teen, I would lie awake at night with the window open and hold my eyes open in case Jesus Descended to talk with me. Feeling that I had already suffered much, I felt we would have much in common. He never came to me directly.

But a black cat did show up, sat on the patio outside my bedroom window and waited for me to speak. I said nothing, and so he waited. Finally, the sun came up and he left. 

There are far more serious answers and meditations that should be given to this question, but I am too timid to offer them here. When one begins to talk about, think about or write about Death, dying and the like, others can become overly concerned and for people with E., it can be a double concern because many of the drugs we take can cause "suicidal thinking". So, I am compelled to add that I am writing about Death as a participant in the Carnival and not as an outgrowth of some drug-induced ideation...

All I can really offer is that I believe in a metaphysical world and feel myself a part of  it at all times. 

For those of you who think that I am suggesting a link between mysticism and TLE, let me make clear that there seems to be one---the 5 symptoms together are called Geschwind Syndrome and this symphony of elements is supposed to outline many TLE epileptics, particularly of the left side, accurately. 

But, docs haven't made their minds up about Geschwind's Syndrome... Here is what D.F. Benson has recently written on the subject:

Benson DF.

Department of Neurology, UCLA School of Medicine 90024.

A characteristic personality syndrome consisting of circumstantially (excessive verbal output, stickiness, hypergraphia), altered sexuality (usually hyposexuality), and intensified mental life (deepened cognitive and emotional responses) is present in some epilepsy patients. For identification, the term "Geschwind syndrome" has been suggested as a name for this group of behavioral phenomena. Support for, and criticism against, the existence of this syndrome as a specific personality disorder has produced more fire than substance, but the presence of an unsettled, ongoing controversy has been acknowledged. At present, the strongest support stems from the many clinicians who have described and attempted to manage seizure patients with these personality features. Carefully directed studies are needed to confirm or deny that the Geschwind syndrome represents a specific epilepsy/psychiatric disorder

So, when I write that I have considered suicide ever since I was a child or that I talk incessantly or that I am mystically and religiously inclined, etc. you can see it may have an epileptic origin. Not because of the the drugs, but from the etiology of the E. itself.

July 12, 2008

Whining About Chronic Illness/Disability!

When a chronically ill person crosses over into disability, I believe that Parson's Sick Role Theory can no longer apply. 

Why? Well, because instead of insuring an acceptable status for the ill person, Sick Role Theory, as applied to the chronically ill or disabled, provides a conundrum in our perceptions of the disabled individual's status. 

This means that as long as the chronically ill or disabled individual participates in the guidelines established by the Sick Role Theory, the individual is left open to denigration of status, ridicule.

Instead of being an individual who is participating in his care, the chronically ill/disabled individual is now a whiner.

 Following doctors' orders and trying to 'get well' as his only task is now viewed as self-centered behavior. 
If we can recall, the nut of Talcott Parsons work centered around some pretty specific guidelines:

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, this Theory presupposes that the ill will recover and that the process will be a finite one, not an enduring one.

Frustration with a never-ending illness creates a variety of responses, among them the urge to scapegoat. The chronically ill/disabled are unable to 'fix' themselves and must continue in their status as ill/disabled, making them vulnerable to scapegoating. The "everything would be OK if you..." or "the only thing you are concerned about is yourself" position creates a designation for the chronically ill/disabled impossible to escape. In place of support, all support of an emotional nature is suddenly withdrawn... it can be damaging for all concerned.  

For some, this kind of status confusion has led to violent attacks. The implicit thought seems to be, at least from outside of such frustration, 'if I can't fix your condition, at least I can fix my own frustration with your condition!'  This could explain some of the recorded episodes of violence against disabled people all by itself.

July 11, 2008

Disability Hierarchies

Sean, at transabled.org, gives a really good description of disability hierarchy. I am reprinting it here:  

What do I mean by "hierarchy"? Simple, there seems to be a belief that some types of disabilities are better than others. Quads are better than paras, paras are better than amputees, etc. It seems at times that only certain disabilities are "acceptable". Wheelchair users are at the top (and that fact is pretty obvious with the International Symbol of Access (ISA), a stylised wheelchair user...

Then there are folks with vision impairments, who have set themselves in a class apart, and who, in the United States anyway, have managed to get consistantly higher disability benefits through advocacy. My hat is off to them, whatever they can get is good.

But it does not help with presenting a united front with people who have other disabilities. And then, there are those with cognitive impairments. Often relegated at the bottom of the totem pole. Too many people in the Independent Living (IL) movement aren’t able (or willing?) to cater to that group’s needs (although to be fair, I hear the situation is improving).  There is a feeling that these folks are not worthy of the respect of the disability community. In fact, the disability community as a whole behaves towards people with mental
 illnesses somewhat like society at large behaves towards the disability community.

It is my experience that Sean is absolutely correct. As a person with E., I can say that I have visited many disability sites only to find that epilepsy is not listed among any of the disabilties they address. Can there be anything more totally debilitating than epilepsy?

The results of a recent survey conducted by Disaboom should be enlightening. The survey found that 52 percent of Americans would rather die than live with a severe disability. Disaboom, an online community for people with disabilities, says it announced the shocking results in an effort to educate people about why this viewpoint is so tragic. But, like so many disability websites, Disaboom does not list epilepsy among the disabilities or conditions it addresses. This is suggestive of an interesting conclusion: both the greater share of Americans and Disaboom are engaged in ableist thinking when it comes to dealing with or lending a hand to persons with epilepsy. 

Remember the ADA?  The civil rights legislation designed to afford the disabled full protections as citizens? Well, a creator of that legislation was himself a person with epilepsy--- Tony Coelho. He was a person who, without regard to hierarchy, saw 
a need for all of us to receive protection as Americans. 

The ways in which folks categorize epilepsy are fascinating. In the first place, to class epilepsy as a mental disorder or disease is dead wrong. Neither is it a stand-alone cognitive impairment. There was a time when these classifications could be supported by the medical establishment, but today, such classifications are obsolete. Though epilepsy resides in the brain, it is not a mental disorder. Though it can affect cognition, it is not a cognitive impairment. Epilepsy is a disorder of the brain, and is the most common one in the world. 

Epilepsy is a general term used for a group of disorders that cause disturbances in electrical signaling in the brain. Like an office building or a computer, the brain is a highly complex electrical system, powered by roughly 80 pulses of energy per second. These pulses move back and forth between nerve cells to produce thoughts, feelings, and memories. When those impulses move  more rapidly-as many as 500 per second for a short time-due to an electrical abnormality in the brain, an epileptic seizure occurs. This brief electrical surge can happen in just a small area of the brain, or it can affect the whole brain. Depending on the part of the brain that is affected, the surge of electrical energy can cause: 

Changes in a person's sensations or state of consciousness. 

Uncontrolled movements of certain parts of the body or of the whole body. 

Epilepsy is also known as a seizure disorder because the tendency is to have recurrent seizures. Epileptic seizures vary in severity and frequency, and even in the time of day they occur.  

Okay, so that's the basics of what epilepsy is. Now it's up to you to learn the details of an epileptic's experiences in living. Instead of telling us that you don't want us, or that you don't consider us disabled, open up, include us and learn something new... 

We're all waiting!