12:27am August 20, 2014

““Trached dykes eat pussy without coming up for air.” Connie Panzarino, a long-time disability activist and out lesbian, would attach this sign to her wheelchair during Pride marches in Boston in the early 1990s. Shockingly explicit, her sign refuses to cast technology as cold, distancing, or disembodied/disembodying, presenting it instead as a source and site of embodied pleasure.”

—

From Feminist, Queer, Crip by Alison Kafer, which I have not read, I was just trying to find this quote because I love it so much. I love when disabled people show our technology as something other than awful. I know some of us find it awful, but some of us don’t.

I love my feeding tube, I feel like I have a personal relationship with my feeding tube, and a rather intimate one at that. It feels like it’s alive and it talks to me, even if the sounds it makes are rather crude at times. I love it and would never want to go back to being without it. And people don’t understand, at all, how I could feel that way about a couple of tubes inserted into my abdomen to add and remove things from my body. But I do. I love my tubes so much.

I wish I could write amazing poems about my feeding tube the way Connie Panzarino wrote amazing erotic poems about her respirator. Mine would not be erotic, but they would be intimate and loving. I love my feeding tube more than I ever expected I could.

I feel similarly, though not as strongly, about my bipap. And when my lungs lack the ability to breathe entirely on their own, then the bipap suddenly becomes my savior and it becomes perfection incarnate, something to almost worship as it shoves enough air into my lungs to make them breathe again.

Similar feelings about my oxygen cannula.

These things are not cold dead technology imposed on my body. They are living cyborg parts that have become, to varying degrees, a part of me. I even have an electronic implant that lets me urinate, how much more cyborg can you get than an electric piss-muscle-relaxer? It’s threaded through my tailbone and into the pelvic floor muscle to make my urethra stop spasming shut.

And then there’s my tube, of course.

Those are the two main implants.

But the oxygen cannula and the bipap have a removable-cyborg sort of quality to them as well. Especially when I desperately need air and they are all too willing to provide it. They aren’t cold dead machines either. They are bringers of air which is life.

In fact each of these things brings me life.

My InterStim lets me get rid of urine, which is vitally important. It prevents infections too.

My GJ tube gives me food, water, and meds, as well as preventing aspiration pneumonia.

And my bipap and oxygen cannula give me air. My bipap works all night long in a complicated rhythm to not only keep my airway open from obstructive sleep apnea, but also keep me from succumbing to central sleep apnea, a rarer condition where you just stop breathing in your sleep for no apparent reason. It has to track when I am breathing, and if I stop, it shoves huge amounts of air in to jump-start the breathing process. This makes it invaluable when I am awake but too weak to breathe on my own, as well, and my pulmonologist has told me I do the right thing when I use it that way.

These are beautiful devices, they are parts of me, they are wonderful, they are not bad or awful or scary, and they are not “All those scary dead machines” that people talk about when they say their relative isn’t their relative anymore because they have feeding tubes or trachs or bipaps on in the ICU. ICU nurses believe getting a feeding tube or a trach is the beginning of the end. I would say my feeding tube is when my recent life began. It was the first time I started getting better instead of slowly slipping towards death, although that happened a little bit too.

I love my feeding tube, I love my Interstim, I love my bipap, and I love my oxygen cannula. Love them. Would not trade them for anything, except maybe an upgrade. ;-)

How many nondisabled people understand the intimate relationship many disabled people have with our technology? I wonder if it is the way some people feel about their favorite cars and bicycles. Except this is tied so much more directly to survival, that it forces the bond to become closer and closer. Sort of like when Fey and I were in a survival situation, our relationship became much more intimate than it would have been had I had caregivers when I adopted Fey.

But my feeding tube especially. Pure love. Wish I could express it in poetry, but I don’t have that skill right now.

(via youneedacat)

And this is why we care about our assistive technology so much,why we get a lot wiggy when they don’t work, why they live inside the boundaries of our bodies.

(via okideas)

I did end up writing a love poem to my feeding tube, amazingly enough.

On tumblr it’s here:

http://youneedacat.tumblr.com/post/95252404665/tube-love-its-name-in-medical-ese-is-a

On my main blog it’s here:

http://ballastexistenz.wordpress.com/2014/08/20/tube-love/

It also contains artwork I did last year of my feeding tube, on a graphics tablet.

Notes: