My name is Mel Baggs — you might know me as Amanda, but I’ve started going by my middle name again. I am a disabled writer and artist. I am cognitively disabled, physically disabled, chronically ill, developmentally disabled, and psychiatrically disabled, so I have experience with a lot of different disability communities. I often feel like an outsider in all of them, but the one I feel most at home in is the developmental disability self-advocacy community. This is because it’s not a community based on a diagnosis, but a community based on a history of shared experiences, and I have lived in the developmental disability service system for pretty much my entire adult lifetime. I was born in 1980, so I am 33 years old at the time of writing this.
Ballastexistenz is a historical term that means ‘ballast existence’ or ‘ballast life’, that was applied to disabled people in order to make us seem like useless eaters, lives unworthy of life. I knew when I started this blog that this was how many people perceived me, but I have since experienced levels of discrimination, particularly in the field of medical care, that would have killed me outright had I not had a strong disability community fighting for me.
I’ve not been happy being considered an ‘autism blog’. I am autistic, but that’s not my main identity as a disabled person. More times than I can count, I have posted something of my experience that I saw as having universal applicability, only to be told “other people besides autistic people experience that, you know”. I do have a habit of writing about very specific aspects of my life experiences, but I write about them because I believe that each of our life experience can be applied more universally to learn about life and different situations. I guess I have mixed feelings about being considered a ‘disability blog’ too, but this is definitely far more of a general disability blog than it is an autism blog.
My biggest hobby is crocheting. I do it all the time, day and night. It gives me something to do with my hands. And I need things to do with my hands. I need things that are concrete, things outside the world of words, things that are useful, things that are beautiful. Before this, my only creative outlets were painting and playing the violin, and both of those take a level of effort and planning that is difficult when you’re sick a lot. Crochet can be done anywhere.
In the eyes of the medical profession, I’ve become even more of a ballastexistenz than I used to be, ever since I got my feeding tube last year. I had no idea that once you got a feeding tube, you crossed a line into a category of people that are seen as being ‘artificially kept alive’. People who maybe shouldn’t be kept alive. Have you ever heard someone say “We have the technology to keep people alive too long these days”? Said it yourself? People on feeding tubes, people on ventilators, we all have to contend with this idea that maybe we shouldn’t be here. Maybe we’re a waste of resources that could be better used on people who really matter.
Make no mistake about this: I love my feeding tube with a passion. Before I got it, I was aspirating my stomach contents several times a week and was not expected to live all that much longer due to recurring bouts of aspiration pneumonia. Now, I’ve only aspirated two or three times in the year since I got it. I also had lost the ability to eat more than an Ensure or two a day, and now I can eat exactly as much as I need to, by pumping Osmolite directly into my intestines, bypassing my semi-paralyzed stomach.
This is all wonderful and allows me to experience life in all its amazing beauty. Nobody can ever tell me that I’ve been kept alive too long, or that there’s something creepy or scary about having food put directly into my intestines instead of through my mouth.
The tools I use, since these things can be important in the disability community:
I have used a communication device as my main means of communication for most of my adult life. I’ve only been able to speak communicatively a couple times in the past thirteen years or so (the ability went away as unexpectedly as it showed up), so I am considered nonspeaking. I grew up sometimes able to speak and sometimes not, and with a complicated relationship to speech and receptive language. I slowly lost both speech-in-general and speech-as-communication starting in adolescence and continuing into early adulthood. I use both typing and picture symbols depending on what I need at the time. I communicate best outside of language altogether, but they haven’t made tools to interpret that. I am sometimes a good writer, but language is extremely tiring for me nonetheless.
Right now, I walk most of the time with a cane, and use a manual wheelchair most of the rest of the time, with a power wheelchair only for long-distance uphill climbs and things like that. I grew up able to walk all of the time, but in adulthood gradually started needing a manual chair, crutches, and a power chair due to a combination of a movement disorder and severe undiagnosed adrenal insufficiency, among other things. With the adrenal insufficiency diagnosed and treated, I can walk better than I’ve walked in years, but I still use a cane, and still need a wheelchair sometimes.
I still need my GJ feeding tube due to gastroparesis, and that is not expected to change. The feeding tube has two parts, one leading to my stomach and one leading to my intestines. The one leading to my stomach allows me to drain stomach fluid so that it won’t overflow into my lungs. The one leading to my intestines allows me to put food directly into my intestines, bypassing my stomach. Between the adrenal insufficiency and the gastroparesis I’ve involuntarily lost about 70 pounds, but I’m putting some of it back on now that I’m being treated.
I was bedridden for many years due to the adrenal insufficiency. I still spend a lot of my day in bed, but I am more and more active every day. I have chronic pain that means that even though I’m physically capable of being out of bed for longer and longer periods of time, I still need to return to my hospital bed a lot to rest from severe joint and muscle soreness.
I use splints and braces some of the time due to hypermobile joints. This includes silver ring splints, which are one of the most amazingly beautiful pieces of medical equipment I have ever seen in my life.
I wear prism glasses because my eyes have a tendency to slide outwards when they get tired. If I could use tinted lenses for my visual perception difficulties, at the same time, I would. But I don’t have the money to do that.
I use supplemental oxygen some of the time, especially during and after my relatively frequent lung infections. I have a little-known condition named bronchiectasis that makes it hard to avoid and clear infections, and which can become worse with each infection. I also use the oxygen when I’m doing strenuous exercise, or expecting to be out for a lot of the day. My need for the oxygen varies a good deal, as my oxygen saturations can range from roughly 99 (perfect) to 83 (not good).
Usually, when people assume things about me, they’re wrong. My life is complicated, and it does not follow the standard stories that people expect either of disabled people in general, or of people with my specific conditions. Pretty much no matter what I say, it ends up creating assumptions that are inaccurate. I am not trying to mislead people, I just can’t tell my life story every time I say something about myself. Please be understanding about this. Every person is different, even a person with a collection of labels identical to mine is going to be completely different from me in a large variety of ways. For some reason, however, the blame always ends up being put at our feet as disabled people, when we aren’t what someone expected.
Here are some links that tell you about aspects of who I am:
- The Fireworks Are Interesting
- Up in the Clouds and Down in the Valley: My Richness and Yours
- Distance Underthought
- Cat Resonates With Light
About how not to make certain common assumptions about me or my life: