Representation

If you step in the logical flaw rabbit hole

of proclaiming to represent

ALL PEOPLE WITH DIABETES!!!!!,

then the least you can do is

own it.

 

Was your six-figure “non-profit executive” salary there

to represent Shane Patrick Boyle

when Go Fund Me fell fifty dollars short?

 

Have you ever seen a human being in DKA,

breathing labored, blood poisoned?

Would you look her in the eye

and still have the audacity to suggest,

“This could all be easier

if you just took the bus to Walmart,

bought cheap insulin there,

took a wild guess at a 3:52 am dose

of one of the most powerful Rx’s on earth.”

 

Her breathing is labored.

Her blood is poisoned.

There is no more room on this bus.

 

I’ve written long enough

to know that I, too,

have made mistakes.

The ‘disease warrior’ metaphors

The representation claims

Forgetting to check my privilege

at the coat rack

Running my mouth too loudly

to listen

 

How can we pretend to represent

all people with diabetes

when we have strong Wi-Fi connections

the acquired ability to read and write

the color of the skin we were born with

the restocked fridge,

while so many of our diabetes brothers and sisters

are dying slowly and painfully

without access to the prescribed air

we breathe?

 

Our stories are the only ones we can tell fully.

To say otherwise is to snuff out others’ lights

which have already borne enough pain.

 

There has to be a better way

to make room on this bus.

 

 

3 thoughts on “Representation

  1. We should all write this. Several times over. We all fell $50.00 short, and we will all continue to fall $50.00 short until the entire community knows they can reach out and we; those who live with this disease; will never let that happen to another.

    Liked by 1 person

  2. I’m in agreement with this on many levels. I get all of my Type 1 diabetes healthcare — both treatment and supplies — for free from the Department of Veterans Affairs because I was diagnosed while on active duty. It does not get much better than that, which is something I never forget and I am eternally grateful for.

    On the other hand, as far as I am concerned neither the ADA nor JDRF 10 claim to represent my interests — either in terms of public policy or public perception. For their part, my best guess is that 90% of the effort and programs of the ADA are directed towards people with Type 2. I understand that, and don’t begrudge that community for getting all the help they can. However, for the ADA to claim to represent people like me equally is fatuous. This conflict highlights the reason why the word ‘Diabetes’ has come to mean Type 2. If you don’t believe me, look at any random collection of news or medical articles that only used ‘diabetes’ and see how many are talking about Type 1.

    The JDRF is only recently beginning to understand that older adults also live with Type 1. Look at any of their advertising or legislative efforts, and you will be sure to see children. I get it – sick kids get more sympathy (and generate more income) than old people like me. But more personally, as someone who is pro life, I find their continued interest and emphasis on fetal tissue research to be morally reprehensible. In fact, when I had the opportunity to receive and islet cell implant from an institution engaged in that research, I turned it down flat. My family and I have endured more than our share of complication hell in the decade since, but we have never once regretted our decision.

    When the Diabetes organizations get up in front of Congress and celebrate how many people with diabetes they represent, you can subtract me from that tally.

    Like

    1. Thanks, Tom. This hits all the right notes for me, as you well know. Especially when it comes down to the important moral implications you raise here, these orgs need to tread lightly. Falsely proclaiming to represent all does more harm than good to those they purport to serve. Much respect for you and your voice, as always.

      Like

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