I am now blogging at The Chronic Scholar. See you there!
I am now blogging at The Chronic Scholar. See you there!
i’d like to share with you this provocative piece i wrote for the disability studies grad-level into course. the prompt was to define ‘ideology of ability’ according to the late Tobin Siebers.
it was a pleasure to write, though i recon not a pleasure to read.
proceed with caution…
It is within thoughts of no traceable origin that the ideology of ability resides; indoctrinated into your being before you were able to decide for yourself. Without your permission, your conscious consent, an idea that an able-body is a good body fused with your prevailing world beliefs. So deeply rooted is this notion and preference for an able-body, that its presence evades you entirely. So long as this untraceable thought goes unquestioned, you will likely never know it is there –lurking, contextualizing, meaning-making, translating for you what you consume, uncritically, undigested. As a result, you will financially and mentally buy into the market’s material and ideological solutions. As a living person, you follow orders as best you can to maintain and enrich the health of your body. You will eat well, exercise often, and comply with any medical regimen prescribed to you. As a dying person, it will be with conviction you ensure loved ones that the real you, the you that exists wholly independent of the body now failing, will be waiting for them in heaven.
Unchecked paradoxical thoughts such as these, which inevitably subscribe you to the ideology of ability, will repeatedly fail to expose the cruel and indecent consequences befalling individuals who are not able-bodied. For those who do not meet the standards of ability for which you strive, there can conceptually be only a less-than body, a sad body, a body in need of fixing. Every bodily variation, then, every “disability”, will be axiomatically pathologized and ultimately ascribed inferior status as a human being. Because while the real you is not located within your body (an able-body), the real them is located within their body, their broken unkempt body. You will generate general characteristics of the disabled as a lazy, unmotivated, and defeated people with low quality of life. You will see value only in the disabled person who transcends their bodily-diversity and becomes closer to able-bodied. In that disabled person you will see an exception to the rule; you will see some combination of talent, creativity, potential. In that disabled person you will see value and human-worth. This one is special, you will think.
It is within an “ideology that uses ability to determine human status, demanding that people with disability always present as able-bodied as possible…” (Siebers, 32) that your sense of self flourishes. Against this ultimate other, the disabled other, you secure your own human status, for so long as you are not one of them, the real you resides beyond the bounds of your body. The real you cannot be diminished, reduced to, or contained exclusively within the confines of your skin, just so long as you are not one of them.
In April 2014, New York Times journalist, Elizabeth Rosenthal published an article entitled, “Even Small Medical Advances Can Mean Big Jumps In Bills.” As the title suggests, Rosenthal’s article reported advances in diabetes technology as minor, but costly. She refers to persons with diabetes as a “captive audience” responsible for “spawn[ing] lines of high priced gadgets.” (Rosenthal, 2014). Quoting the national expenditure on diabetes at $245 billion in 2012, Rosenthal drives home her point that the innovations to technologies made by diabetes supply companies are little more than planned obsolescence and thus not worth the expense (American Diabetes Association, 2012).
Diabetes advocates and bloggers took to social media to challenge the claims made by Rosenthal (Close, 2014). Advocates accused Rosenthal of misrepresenting a subgroup to which she did not belong and of potentially damaging their likelihood of coverage of future technological advances. One advocate explains, “it’s wrong to paint a broad picture of pumps and CGMs as “wanna-have gadgets” rather than medical necessities. What a terrible message to be broadcasting just at a critical moment when we patients are working so hard to encourage coverage of these necessities!”
Coverage of advances and innovative technologies and treatments for persons with diabetes is threatened beyond the reach of the media. Perhaps a larger contributor to and influence over cost-benefit analysis performed by insurance companies, are the guidelines set forth by biomedical ethicists. In the dangerous line of declaring right and wrong, bioethicists’ works are subject to misinterpretation. Consider the following discussion of ordinary verses extraordinary treatment.
Beauchamp and Childress, authors of the widely-circulated bioethics text, Biomedical Ethics, set for distinctions between what is to be considered an ordinary or extraordinary treatment. Ordinary treatments, or those which cannot be omitted or declined are likened to “obligatory”, “customary”, “usual”, “simple”, “natural”, “noninvasive”, “inexpensive”, or “routine” treatment. In contrast, extraordinary treatments, or those which may be legitimately omitted or declined are likened to “non-obligatory”, “unusual”, “uncustomary”, “complex”, “artificial”, “invasive”, “expensive”, or “heroic” treatment (Beauchamp & Childress, 2012). While Beauchamp and Childress do draw attention to the danger in such a broad categorization, calling it “morally misleading” and too subjective, they fail to address a most vital question. Who decides?
In the cost-risk-benefit analysis behind every decision about a course of medical treatment, whose expertise is most valued? Who gets the final say? The doctor? The patient? The insurance company? The answer is not the patient, for if it was, every patient would have the medical devices they see fitting for their lifestyle. Nor do the doctors get the final say, for if they did, every patient would have the medical devices recommended to them by their doctors. By process of elimination, then, the answer of who decides whom gets a certain treatment, is the insurance company. By looking to the ethical guidelines on distinctions between ordinary (inexpensive) or extraordinary (expensive), the insurance companies can justifiably (legally) deny a person with diabetes access to an innovate management device. The same continuous glucose monitor a diabetes caregiver and advocate credits for saving her daughter’s life is deemed ‘unnecessary’, “complex”, and ‘expensive’ by her insurers. In the dangerous line of declaring right and wrong, bioethical guidelines, by proxy, threaten access to advancing technologies for people with disability.
American Diabetes Association. (2012) Economic Costs of Diabetes in the U.S. in 2012. Retrieved October 26, 2015.
Close, K. (2014, April 9). An Open Letter to The New York Times: Treating Modern-Day Diabetes with Modern-Day Therapies and Technologies. Retrieved October 26, 2015.
Rosenthal, E. (2014, April 5). Even Small Medical Advances Can Mean Big Jumps in Bills. Retrieved October 24, 2015, from http://www.nytimes.com/2014/04/06/health/even-small- medical-advances-can-mean-big-jumps-in-bills.html?_r=4
i started coursework in disability studies in august.
what’s happened since?
i’ve gotten angry and i’ve gotten sad.
outrage has befallen me and a sizable part of the innocence and optimism i’ve been known to walk with has faltered.
i’m jaded, but i’m not sorry about it. . .
…(here it goes – deep breath)…
i am disabled and i’m not sorry about it.
i’m not sorry to any person who lives with a disease or condition who refuses to see themselves as disabled.
i’m not sorry that as a person with diabetes, i claim disability status.
i’m not sorry because i don’t see people with disability as the one-dimensional bad and sad creatures our culture has decided they are.
i’m not sorry, because i am disabled and that is okay. i need no counseling, nor therapy. no pity-party here. because i am not making a value statement. don’t you want to live in a world where being out about diabetes is okay?, where being out about a disability is accepted and welcomed?
i haven’t always been so bold, but here today… i’ve learned to be and i’m still not sorry about it…
BECAUSE: impairments reside in the physical realm, but disability (largely) does not.
i am disabled by the society that judges the food i put in my mouth and my “correlating” dress size, but doesn’t judge another un-attached from the label for the same things.
i am disabled by the outside world demanding “you are NOT disabled if you have diabetes”, leaving no room to step back into my illness and relent when i need to, seek accommodations when i need to, recharge when i need to. we are stuck complaining about never getting a break from chronic illness in a culture demanding we refuse to ask for one. as if being disabled were the bottom of the barrel, worst thing that could ever ever ever be, we feed into this idea that disability = broken. but, who decided that anyway? why don’t we question this before declaring “NON-DISABLED, ABLE-BODIED, THAT’S ME!!!!”?
i am disabled by the pirate-like business the healthcare system has become. i’m made to spend my money on maintaining what physiologically doesn’t work in my body. i can’t decide to travel with the money i have to use for insulin, for pump supplies. what i can do out in the world is limited by the country i live in – who punishes me for my disease by making me pay for it.
i am disabled by the slander and shaming i hear from health care providers, from strangers, in movie and tv show scripts, in classes – attributing diabetes to ‘choice’ and ‘lifestyle,’ throwing blame around like it is unquestionably deserved.
i am disabled by every harsh statistic about diabetes and mortality (because that’s the main narrative we seem to use for funding) permeating every corner the community i seek shelter in, reminding me how grim will be the health of my future body. i could use that messaging as fuel, and fight against the possibility, but i can’t live my whole life ‘fighting’ anything. i have no spoons for that.
i am disabled by the narrow recommendations for self-management offered and validated by the CDC and ADA. what i need most, peer-support, absent entirely. if a healthcare provider sees peer-support as ‘ineffective’ because the CDC and ADA do not sanction it, then how can i rely on them to suggest it in a time of need?
i am disabled, and i’m not sorry.
i am disabled and strong enough to say so, even with the possibility of being ostracized for coming out and saying it.
what i know is i will never again fight against the disability status because disability is more than bad and sad, because people with disabilities of all kinds deserve respect and full personhood, because i know what doing so inadvertently says about other people living with disability.
there are many enriching ways to live beyond what i experience as such, and as i would want someone without diabetes to respect my life as more than the difficulty observed, i respect the lives of those with disability enough to not drag the negatively associated label down further by setting myself apart from it.
i am disabled, and proud.
it has been a while since i wrote last.
can i just chalk it up to graduate school?
working at 18 credits at once is just as challenging as i expected.
because my life is academia right now, i wanted to share a past essay. i wrote it during undergrad and have found new meaning in the topic of discussion.
as i read and brew over disability studies, what disability is and what part i have in the conversation, i see more and more of a connection my religious studies degree.
one reason why we take to religion is because it helps us make sense of the reality we experience. religion gives us meaning, and in some cases, hope. for the purpose of this post, religion gave me a new lens to set disability identity against.
and the contemplation continues…
My Nuclear Family
My mother, Mary, and father, Richard, brought me into existence in 1990, three years after bringing my sister, Brittany. We were born into a legacy -albeit a newly formed one- that would, in many respects, define who we were and how we walked in the world. The dynamic relationships within my family have worked to mold each of us as individuals, but also redefine the public and private notion of what it means to be a ‘Gabel’. We have all been essential in creating each other, ourselves, and our collective. This essay borrows from the concept of Indra’s net explored by Francis H. Cook to illustrate the fundamental nature of the interdependent dynamic relationships that have formed our individual and collective identities.
The jewel net of Indra, sometimes referred to as ‘Indra’s net’, is a metaphor for a concept of interdependent identity. The metaphor presents an image of a net of reflective jewels. Each of the jewels captures a reflection of all other jewels, which also each contain an image of all others, so that when one looks at any single jewel, one sees every jewel. The jewels here represent all things in the universe. Thus this model suggests that all components of reality are not only dependent on, but also made up of all other components, so that no one component can exist alone. It also suggests that each component is essential to the unitary whole, hence with even one component missing, the whole wouldn’t be complete. According to this model, as Cook says, “nothing exists truly in and of itself, but requires everything to be what it is” (220). Further, Cook asserts that within this model is a concept of codependent origination. This means that not only is each component defined by its co-components, but also each can be said to have given rise to all of the others. In Cook’s own words, “each is at once the cause for the whole and is caused by the whole, and what is called existence is a vast body made up of an infinity of individuals all sustaining each other and defining each other” (219). Perhaps it is apparent then, that a contemporary example or application of the concepts of interdependent identity and co-dependent origination is a nuclear family. A nuclear family consists of a mother, father, and their children living in a house separate from any extended family. It is a notion of family that is prevalent in the United States and other ‘western’ countries and is often referred to as the ‘immediate’ family.
The members of my family have similar mannerisms and dispositions, and share the same sense of humor. We learn from one another in every aspect of life. When I spend time with my sister, I in some way get to see my mother and father, because she reflects their personalities. The same goes for my mom and dad, if I am with one of them, it feels like I am with all of them.
But it is not just our personalities and the identities associated with those that fit the model presented by Indra’s net, it is also our symbiotic relationships. When something happens to one of us, it happens to all of us. We all feel it, we all react and adapt to it. For example, when I was eleven, I was diagnosed with juvenile diabetes. Because it wasn’t genetic in my case, it was wholly unexpected. After my diagnosis, my parents took on the disease themselves. They began holding fundraising events to raise money for The Juvenile Diabetes Research Foundation, and began advocating for diabetes awareness. When I was diagnosed, it was as if we were all suddenly ‘diabetic’. We took it on as one. We learned together, we struggled together.
Being an individual is a requirement in this society. Making clear your distinctive identity, as if to prove some unique self apart from family, friends, or any other being has become paramount to success and prestige. But I would agree with Cook when he argues that, “the part and the whole in this sense are one and the same thing, for what we identify as a part is merely an abstraction from a unitary whole” (221). Without the whole, there cannot exist the parts that make it up, therefore, individuals can never be wholly independent. Further, Cook argues, “to insist that it is only a part is to fall into a fallacious view of the whole as an independent and subsisting entity to which parts belong” (220). So, not only do the individual components depend entirely on the unitary whole, but also the unitary whole depends entirely on the individual components. Therefore, neither the whole nor the components can exist on their own.
This concept is a bit tricky to apply to people because the world clearly does not cease to exist if one person dies, if one component can no longer perform their function. I would argue, however, that some parts of the world do suffer at the loss of an individual; and that they not only suffer from heartache but also from loss of potential to grow from that component. That is to say, when an individual dies, other individuals who would have been impacted by said individual are robbed of their opportunity to grow. Before I was diagnosed with diabetes, I was on the brink of death. Had my doctor not figured it out when he did, had I died, my parents and sister would be entirely different people. Their collective identity, their whole, would have been privately and publically transformed in an entirely different way. Being a ‘Gabel’ would carry a radically altered meaning. We are a family of individual components who depend on each other and our collective whole for personal growth and identity. We represent each other, reflect each other, and sustain each other; we act as one. My family is a jewel net. As Cook says, “ It is not just that “we are all in it” together. We all are it, rising or falling as one living body” (229).
Cook, Francis H. “The Jewel Net of Indra.” Nature in Asian Traditions of Thought: Essays in Environmental Philosophy. Ed. J. Baird. Callicott and Roger T. Ames. Albany: State University of New York, 1989. 213-30. Print
i tend to have high hopes for conferences,
and i’m no statistician, but roughly 90% of the time, those high hopes are met or surpassed.
this week i’m in new orleans for #aade15 – american association of diabetes educators national conference 2015. my attendance here is all thanks to the diabetes hands foundation‘s diabetes advocates program. DHF offered fantastic scholarships for this summer’s conference line-up. if you missed some of the conferences and are looking for summary, don’t miss everybody talks – DHF’s brand new podcast covering topics related to diabetes. plus, the hosts are pretty baller.
i have been anxiously awaiting this week’s festivities as it will be my first time attending a conference as a graduate student.
[dusts off shoulder]
whether or not my role at #aade15 will change has been weighing heavily on my mind.
will my lens be different?
i’ve thus far attended conferences solely as a representative of diabetes hands foundation,
or as an individual patient advocate.
now, i’m looking for what metrics researchers are measuring, whether their studies are problem or emotion focused, and how well their findings translate into clinical practice.
should my lens be different?
am i a patient first and a researcher second while here,
or the other way around?
perhaps there is a way i can fuse both hats?
half professional, half lived-experience?
if there is a way to fuse the two, i’ll find it this week.
here are some of the sessions i’ve got high apple pie in the sky hopes about:
this is my dad and i’m so proud of all the work he put in.
if i can dance around that well when i’m his age (cough cough, 61),
i’ll be happy as a whale in a kelp storm!
i can trace my passion for diabetes-related social advocacy back nearly a decade,
must have been 14-15 when i started writing out my diabetes story.
i needed people without diabetes to get it.
i needed someone who understood.
i attended a support group or two, but found them to be information overloads.
that, and i had trouble connecting. could have been age related, maybe i just wasn’t ready.
regardless, the longer i went without meeting someone who understood, the greater the fire burned in me to start something, something i wish i had as i grew to know my disease.
it took until my sophomore year of college to act on that growing flame,
but thanks to lillian, i did.
lillian and i met in a rather unconventional way.
i worked at smart alec’s as a cashier and lillian frequented the establishment with her friend francesca.
one day, lillian showed up to get salads with her mom.
i didn’t usually pry into the affairs of our regulars, but this time i asked,
“why the visit, mom?”
my memory may be tricking me, but i recall a rather sullen glance between lillian and her mom before the answer spilled out.
lillian had been diagnosed with diabetes.
i pulled my pump from my pocket and said, “me too.”
it was only a short time after that we started getting together.
we talked a lot about diabetes, we lamented and we laughed.
then, lillian and i dreamed up a brand new support group,
which we affectionately called:
Bay Area Diabetes Association of Students and Supporters.
why the long name?
well, because it is an acronym that spells out:
our support group efforts only extended to flyer hanging.
but boy did we dream up all kinds of possibilities…
what if we could actually get a group of college age-students and dish about all things diabetes?
wouldn’t our lives be so much better if only we had a safe place to vent?
needless to say, B.A.D.A.S.S. wasn’t sustainable and fizzled out.
but my passion didn’t
and neither did lillian’s.
lillian and i met six years ago, haven’t seen each other in five,
and met up today.
yes, for the first time in five years, the only two members of B.A.D.A.S.S. reconvened.
it took no time to remember why lillian and i clicked back then.
she has this sense of social responsibility that moves her into action.
her ‘pipe dreams’ are grand and span years into the future.
she takes unsweetened iced tea at starbucks,
and examines the world around her through every lens possible.
she is considerate of individuals, institutions, and communities.
i admire her.
i look up to her.
and get this,
we barely talked about diabetes.
we didn’t gripe about the trials of life with chronic disease.
rather, we discussed our current situations, goals, and pipe dreams.
diabetes didn’t fit in.
it wasn’t the story;
and i liked that.
the content of our chosen lives felt bigger than the diseases that connected us in the first place.
it was a beautiful thing and i am missing lillian already ❤
– – – – – – – – – – – – – – – – – – – – – – – – – – – – –
a post-post shout out to bea sparks for her stunning comment:
dear author of the above postsecret,
i’ve rewritten the first line of this letter so many times, this nothing of a sentence will simply have to do. hi. my name is heather and i have been living with diabetes for thirteen years; not sure how much time from diagnosis to now i have spent pretending i didn’t have this damned disease. diabetes is the pits and many blame us for it. nothing helps us try to self manage better than being told we deserve what we got, huh?-(insert aggressive wink to denote sarcasm here). living with diabetes can be soul sucking and when we pretend it isn’t, the soul-suckage seems to increase exponentially.
i’m not writing you this letter because i have seen the light and am on the other side of the invisibility cloak, because i’m not. in many ways i’m right in there with you. hiding. pretending. for now and perhaps the rest of my life i will experience health tribulations that lead me to mask diabetes, removing its face, voice, and presence completely. i might be an expert in pretending i have a better handle on my diabetes than i actually do.
when i read your secret, the first thing i wanted to do was reach out and hug you. mostly because i would want a hug myself, but also because hugs happen a lot here. here… in the diabetes online community – affectionately called the #doc. the DOC is where i found the courage to come out from under the diabetes invisibility cloak for the first time.
i’m guessing from your submission to postsecret, that you too find comfort in the anonymity of the internet. the web is loaded with opportunities to purge painfully repressed emotions. i’ve taken advantage of those resources before as well. i did reach a point, however, when purging wasn’t quite enough.
when i read your secret, the second thing i wanted to do was lead you to all of the beautiful people living with diabetes right here on the internet who have experienced life under the diabetes cloak. most of us here have gone through periods of hiding our diabetes from strangers, from our friends, and from ourselves. because of these people, who show humility and courage exactly like you did in that postsecret card, the diabetes that has been my tantalizing struggle transformed from a ‘mine’ to an ‘ours’.
so now, even when i’m nestled tightly under the diabetes cloak, i’m in there with company, with friends, with family.
i’m not writing this letter asking you stop pretending you don’t have diabetes.
i’m writing this letter asking you to give up on pretending alone.
look around you and find that the cloak is actually an expansive tent, filled with individuals under their own cloaks – feeling isolated, blamed, ashamed, burnt out.
let my friends be your friends
and allow diabetes to be more than just yours.
diabetes, dear author, is ours.
if we have to pretend, let us do it together.
hoping you find us near you,
Heather the diabetic.
did you ever keep a journal?
write a paper in high school or college?
have you ever left it long enough to semi-forget that you even wrote it to begin with?
if you have, how did you feel about the way a younger you reflected upon the world?
reading through some of my earliest posts on this blog… which mike lawson inspired me to create by the way… was a whole great big mess of emotion.
in part, i wondered how any one was ever able to comprehend my writing.
so jumpy and wordy and odd.
in… another part… i felt proud to have documented such detailed memories.
overall, my favorite post is one that i wrote two christmases ago, about an annual gift of candy that didn’t stop coming even after i was diagnosed with diabetes.
it meant a lot to me that my family didn’t let diabetes change tradition.
and even now when i read it, i get choked up with gratitude for my darling aunt donna.
Click for the Favorites and Motivations – Saturday 5/16 Link List.
If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)