The Things They Don’t Want To See.

Last fall, I took a class called Disability and Culture. In said class, students were required to develop and produce a creative project about disability-related conundrums.

Disability conundrums are complex dilemmas. They have no right answer and the more you try and find one, the more fuzzy the situation becomes.

Consider the act of staring.

Curious children with limited exposure to disability stare at disabled people in public places because they are seeing something unfamiliar. The guardian of a staring child will likely correct this behavior, saying “it’s rude to stare.” That child learns a lesson through the repetition of this process: don’t look at disabled people (or pretend like you aren’t looking). And as that child grows into adulthood, they carry this lesson into public situations. Overtime it morphs into a cultural norm.

If the cultural norm suggests you ought not look at disabled people because doing so is rude, what are the consequences? The first consequence is that disabled people go unacknowledged, literally ignored. Invisible in public because those around them have been taught (socialized) to believe that non-acknowledgement is kinder than staring.

Imagine now, an able-bodied adult becomes woke (being aware of – as it relates to social injustice) to the consequences of the “don’t stare” norm. This adult actively decides to break the social norm. The adult spots a person in a wheelchair rolling into an accessible cafe, and does the inconceivable. The adult looks. Instant discomfort. Cue inner-dialogue: “oh no, did I look too long? Are they offended? Should I smile? Is a smile patronizing? How would I smile at a stranger who wasn’t in a wheelchair? okay. Do that. Smile like they aren’t in a wheelchair. Shit. That wasn’t right. They look offended. Walk away… quickly. Why was that so awful? uh. Never again. ” The adult, feeling both embarrassed and rude, decides the effort wasn’t worth the resulting discomfort. The adult assumes that the interaction was equally uncomfortable for the wheelchair user and so also feels guilty. The need for the social norm of “don’t stare” is affirmed, and the adult goes on with their life trying to avoid exchanges with disabled people believing -with experience as evidence- doing so is what is right for both parties.

Here in lies the conundrum: to stare, or not to stare?

Is it better to look at the risk of an uncomfortable encounter, or better to continue not looking at the risk of reproducing the invisibility through which oppression is born?

At first, it seems rather obvious, doesn’t it? If we are trying to create a more just world, risking uncomfortable encounters is preferable to risking the continuation of inequality. However, there is more complexity here. This question requires us to examine the power dynamics between the two groups currently and historically. Okay. Say we do this… We might determine that, given the history of oppression and the current demand for physical and mental ‘fitness’ and of having a species-typical fully-functioning body, disabled people hold less social and economic power than do able-bodied people. The problem with power, is that those who have it tend to prefer keeping it. Despite idealizing a more equitable and just world, when getting there comes to giving up power, we find ways to justify keeping the power balance as is. That is, we accept injustices when they threaten our own sense of power AND when we can find a way to disguise or justify the problem.

The adult discussed above left the interaction filled with assumptions about how the encounter must have been for the disabled person. The adult feels justified to not look at disabled people because in their mind, not looking is more comfortable for the disabled person too. The justification comes from the same place of righteousness that does a guardian’s correction of a staring child. Able-bodied people tend to believe that if they themselves were disabled, they would prefer to not be stared at.  Because it is their imagined preference, they project it onto those who live the imagined situation.

While the conundrum begs the question: to stare or not to stare, the central issue is not about staring at all. The central issue comes down to assumptions. It comes down to the powerful making assumptions about (whom they perceive to be) the powerless based on imagined futures. This means that the social norm which seems to exist to protect disabled people from rude staring exists not because disabled people asked for said protection, but because able-bodied people imagined that they would want that protection if the tables were turned. “If I were in a wheelchair, I’d hate it if people stared at me.”

Assumptions about what disabled people think and feel, about how they live, how they hurt, and how they experience interactions with able-bodied people are what hold up and maintain the injustice.

As a person with diabetes, as a disabled person, I want change.

I have found that clinicians, researchers, and even friends and family see only the parts they want to see. They look enough to affirm their expectations and imagined aspects of what diabetes and disability must be like. They assume the rest.

For the class I took last fall, I decided to take up staring as the conundrum for my project because I want to challenge assumptions. The result is this blog post and the subsequent video.

As a person with diabetes, as a disabled person, I make change.

Here, I control the staring. I speak for myself and my experience cannot be imagined. I make the viewer see what I want seen. I demonstrate the hardship of diabetes on a social level. The hardship is not about the needles. It is not about drawing blood. Although, I do call for staring at those things as well. The hardship of diabetes demonstrated here is about being perceived through the lens of an imagined future.

As a person with diabetes, as a disabled person, I am change.

My existence is not limited to the imagining of what it must be, but it is impacted by the knowledge that what I do to survive consists of the things they don’t want to see.

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On Saying Yes: Another MasterLab Reflection

Have you ever been witness to something unjust – someone being teased or treated unfairly? Chances are you have. Chances are also high that upon witnessing such an event, you have felt a specific kind of deep-seeded urge to somehow restore that balance and justice. However, if you are anything like me, that urge is often ignored. I push it away in fear of possibly making the situation worse or because I feel virtually powerless to help. What is more, this urge bubbles up for bigger events, too. For example, my injustice antenna alarms wildly when I hear about a person with a diabetes being hospitalized because they couldn’t afford insulin. I become simultaneously angry and helpless toward a system that unfairly discriminates against those living with chronic illness by making them pay for their life-sustaining medicines. I sometimes feel powerless to make any change to that system because I rely on it for my own wellness, and because I am just one single person. Being at MasterLab this year was eye opening in that it truly challenged the helpless part of my response to the injustice antenna going off.

One of the best talks of the day, and the only one that got a standing ovation, was given by Roniece Weaver, Executive Director of Hebni Nutrition Consultants, registered dietitian and author. She spoke about collaboration and sustainability when attempting to make change with underserved communities. Weaver began her talk with an array of statistics and findings from her own studies on nutritional educational program interventions. Her strategy was to provide nutritional education to communities who lacked access to such information. At first I was rolling my eyes.

I thought to myself, “Here we go another researcher blaming diabetes on individuals for poor food choices and ‘lifestyle factors’; Another researcher who expects that the prevalence of diabetes is a problem of the person and not the society and environment in which that person lives.”

However, about midway through her talk, Weaver’s tune changed. She shifted her position to include the social components contributing to health disparities between privileged and underserved populations. Weaver and her team went beyond education. They also brought produce to the mom&pop shops in food deserts that typically only served the usual gas station food options. Weaver said, “we needed to increase access to whole foods,” but doing so is “not about putting a big box store into a neighborhood, that wouldn’t be affordable.” In a place where food insecurity is high (meaning low-income, using food stamps etc.) opening an expensive grocery fails to meet people where they are at. Diabetes Advocate, Cara Richards tweeted the following:

Screenshot 2016-07-06 10.01.25

My ears perked up with surprise. Maybe Weaver wasn’t just another researcher blaming health issues on individuals over social conditions. Maybe Weaver was presenting something else entirely… Turned out, she was.

Screenshot 2016-07-06 10.15.42

Weaver’s whole message shifted dramatically in my eyes. Her research wasn’t blame-based, it was solution-based. What she shared next had advocates in the room tearing up. Weaver then told all of us about her own methods of advocacy and what practicing those methods did for one community.

Meet FreshStop, a produce shop on wheels.         bus_loading

The concept of FreshStop was inspired by a subscription box service called Blue Apron that delivers fresh produce with recipe cards for making quick healthy meals at home. Though innovative and convenient for those wanting to improve mealtime at home, Blue Apron is not affordable for the average joe. Weaver recalled her thought process, “How do you get something like Blue Apron into low-income communities?” How do we open up health-forward innovations to those who are routinely denied access? Isn’t that the question we all ought to be asking?

How do we increase the reach of the innovations and programs we advocate for to include those who perhaps need it most?

As a person with diabetes, I want tech advancement to happen because I want living with diabetes to be less of a burden on me. As an advocate, I want those innovations to extend beyond people like me who are privileged enough to have insurance, access to local knowledgable doctors, friends in the diabetes community, access to higher education, and time to self-manage. As an advocate, I know that for our system to be just and fair, all who are interested ought to have access to the medicine and medical equipment.

Weaver is a bold advocate and researcher who is a living example of how to extend innovation beyond the bounds of privilege. Her work reminded me that I am not powerless  within the system that perpetuates injustice and health-disparities.

At MasterLab, through Weaver’s talk among many others’, I learned that giving in to the feeling of powerless is but another way to say no. And, I don’t want to say no. I want to act on that urge I feel to restore justice when witnessing unfairness. I want to give up passivity and try harder.
And I know that the only way I can create change is if I try.
The only way to go beyond the bounds of privilege is to reject the feeling of powerlessness and say YESgiphy

Yes, I can stand up to injustice.

Yes, I can be creative and find solutions that go beyond the bounds of privilege.

Yes, I can be an agent of change.

Yes.

 

Diabetes Blog Week: Message Monday

I am beyond thrilled to have started The Chronic Scholar blog in time for the Seventh Annual Diabetes Blog week! Karen over at Bitter-Sweet Diabetes is such a gem in our community and I am so thankful for her work here.

Today’s topic was my suggestion. I wrote this suggestion under the impression that our sense of community may be strengthened by it. Our collective sentiments are representative of our community, and possibly people with diabetes in general. How often do we look at and examine our message though? How often do we analyze the effectiveness, possible results, and second-order consequences of the sentiments we articulate through our stories? I personally wanted to opportunity and space to explore my main diabetes messages, so I am extra thankful to Karen for picking this topic.

I haven’t been the first PWD to admit today that my message has changed over the course of writing a blog. I started it when I was working in the Bay Area at The Diabetes Hands Foundation and am now with DiabetesSisters and a second-year PhD student in Disability Studies in Chicago. I’m thankful for blogging, in retrospect, because it shows my changes over time. I get to read how I was feeling four years ago. What a wonderful opportunity.

With that said, what are the messages I put out into the world via my blog, and what do I hope they accomplish? Well, below are my top two messages. Both stem from personal experience, the latter from my studies in critical theory, and they speak to one another.

Message 1: Diabetes looks like everyone you have ever met, no matter the type, no matter the circumstance.

Can type 1 look like a child? Yes. Can it also look like a grandparent? Yes.  Can type 2 look like a child? Yes. Can it also look like a grandparent? Yes. And everywhere in between. Diabetes does not discriminate, nor does it choose its vessels based on ‘lifestyle.’ The most important message I want to spread by telling personal stories is that diabetes is more complex than the one-dimensional caricature blasted through popular media.

Message 2: When persons with type 1 set themselves apart from type 2 by saying things like “Type 1 means I did nothing to cause this,” we are inevitably strengthening the type 2 stereotype we are attempting to distance ourselves from to begin with.

This is a tricky message to share and to explain. It is complicated and has a couple of moving parts. Moreover, this second message is a reflection of how my messages have changed over time. When I began blogging, I wanted the world to know about type 1. I wanted my friends and family to know that what I endured everyday was more difficult than Wilfred Brimley made it sound. I wanted Ellen to tell the internet and Hollywood to stop confusing my disease with someone else’s.

It was with great humility that I began to witness the second-order consequences of my message and mission to educate. By demanding there is a difference, I reinforce that difference; I authorize it. In this scenario, I, as the educated patient give permission to those being educated to continue believing that type 2 looks they way they think it does, fat and old, bad and sad.

Simply separating myself and my diabetes from THAT type 2 diabetes, I do nothing to fight stigma, but in fact reinforce it.

The message which I stand by now has been my hardest diabetes lesson thus far. As I continue to move through life with this disease, with this plastic pancreas hooked at the side of my jeans, I will be watchful of the impact of my messages. I will allow for humility to guide me, espicially when my righteousness is called into question by doing so.

 


Today’s topic:  Click for the Message Monday – Monday 5/16 Link List.
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)