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:
Hello! I think the work your doing is so beautiful and crucial. I was wondering if you’ve heard of, and if so whats your thoughts are on, the “Icarus Project”? Also where do you think, if any, there exists a line between “art” and communication? I’m thinking about the first half of your ‘Language’ video, which I can imagine a lot of (ignorant, urban, art-world types) would like to define as “video art”. Do you think the languages of otherly-abled people get further marginalized by having their work relegated to the status of “art” by members of the dominant language/class? Does it matter? I’m sorry this is so long winded, possibly the answer to all my questions lay with your ideas and experiences with ongoing physical response to the world around us you talk about in the video.
In solidarity and love
Hi, Wasn’t sure how else to contact you, so here goes. I’m putting together a website with links to writing by people who have experienced mental health issues/consumers/survivors/patients and others. I have experienced these things myself. I was sent the link to your blog by a friend in the community. The site is part of a course I am taking in web design, but I hope to have it go live when the course is done. Can I have your permission to link to your blog on the site?
That’s fine with me.
Hi, Can’t tell if my comment actually went through or not. I’m interested in putting a link to your blog on my site (in progress) of writing by consumers/survivors/patients (I am one myself). Let me know if this is ok with you. Thanks, Annette
This isn’t really a blog comment, but I’m after some information you might be able to help with (no rush, and no problem if it’s not something you want to discuss).
I’m a doctor with autism, and I’ve got a growing number of autistic people coming to consult me. One is a nonverbal autistic girl aged around 10. She clearly understands conversation, and I would like to encourage her to learn to read, as it will open up the world for her. All information on literacy involves using a spoken response from the learner. I’m interested in finding out from other autistic people what their pathway to learning to read and express themselves through writing or typing was, so I can give this child the best opportunity possible.
I seem to be on a roll from another comment, so I’ll write this in the hopes that it’s still relevant two years later.
To clarify, I’m a self-diagnosed autistic, due to the fact that I pass as neurotypical and have a deepseated mistrust for the psychiatric community. Speaking is sometimes hard, especially when I’m tired or have already spoken to many people that day, but never to the point that I’d be considered nonverbal. I am also hyperlexic, reading books at a very young age and I’ve never had a problem figuring out what a written word means in context (how to pronounce it is another story). And I’m fluent in four languages, one of which is Mandarin Chinese. So, not really a typical “case”, I suppose, but autism describes how my brain functions and the issues I have on a daily basis that are invisible to others.
I’m actually quite interested in the intersection between autism and language, and for me I think it has actually been a blessing to be autistic, and is what allows me to learn languages so easily. I think the method of learning most neurotypical people employ involves a lot of translation, and I’d say this is true regarding learning to read as well. While translation (in reading this would be translating into spoken word) is useful in the beginning stages, it actually hampers true understanding of how other languages work. When teaching language, I advocate using translation as reference when needed, but only when direct understanding fails.
If the girl understands spoken word, I’d suggest reading to her with the book clearly in front of her, perhaps following the line with a finger at first. Vocabulary cards with pictures next the words would also probably help, especially if they are organized to be relevant to a particular book that is then read to/with her. As for a response, you could try having her write the word when given the picture, or if you’re still teaching letters you could say “D” and have her write it. If writing works for her, she’ll start learning as much as she can in order to communicate. You can also give situational examples once she’s got the hang of decoding words — “What would you like to eat?” and give her several (written) words to choose from, e.g. “Hamburger” “Pizza” “Tamales” etc., and later on having her write/type a response to the open ended question. And, of course, once she’s capable of reading even basic books on her own, set her loose in a library.
Did you hear about this yet?
Reading your posts and the comments made by other people with autism makes me wonder how you learned to communicate so well. I ask this because my daughter is profoundly autistic. She uses only a few words to communicate when she wants something; i.e., “Pretzels!” or “Go to.” when she wants to go somewhere. I have to fill in the blank after that. She will echo me when I hit the right place and then say, “yes.” She can type very well and does Internet searches. Yet, she does not use keyboarding as a means to communicate.So, I guess my question is, did someone teach you to express yourself via typing and if so how? Or was it something that just clicked one day?
That’s a really complicated story. Or… it doesn’t feel complicated. But it runs against so many of the most common “autism stories” you hear that it requires a lot of detail to avoid giving the wrong idea. (And even then it just tends to give people different wrong ideas.)
So I lost speech very early and eventually got it back in the form of echolalia. But with very poor comprehension. (This is apparently a common pattern for hyperlexic people.) I learned to put together the echoed language well enough that after awhile, you’d have to know what to look for, to figure out that I could barely comprehend any of what I could say. They did partially figure this out during testing for school, but they did nothing about it because much of the rest of my score (largely due, again, to hyperlexia) was quite high, and they didn’t know what to do with such uneven results. So I basically scooted by with my ability to superficially put words together way past my ability to comprehend. With a resulting serious difficulty communicating my own thoughts, or even knowing that was the point of language. All of these abilities were constantly in flux, too, so it’s even more complicated than that.
I learned typing in school, and got very good at it. I could type very fast. I began doing with typed words the same things I did with spoken words. I also tended to compulsively write all kinds of things I’d read or heard places, and recombining those things. I did this in speech as well but I was better at it in typing.
All this time, more meaning began to seep into what I was saying and typing, as well as comprehending, but there were still these enormous gaps. Shortly after puberty, I began to notice those gaps and feel trapped by them. But most other people had no idea. I still didn’t understand what the gaps were. And the way meaning was seeping in, it wasn’t a direct connection. Like it wasn’t “I think this so I’ll say or type it.” It was more like, making more indirect connections, noticing the words and situations that tended to cluster together.
This was also the age that my movement disorder began to worsen. It had been there all along, but fairly stable. Now I was having periods where I slowed down, could not move, could not speak, could not stop moving, and basically all the movement-related parts of autism started amplifying. That includes many aspects of cognitive skills most people don’t think of when they think of movement. All my basic strengths got stronger, my weak areas weaker, and a lot of skills I’d been able to fake but never do, began to vanish. The motor aspects of this are now called autistic catatonia, or referred to as a Parkinson-like movement disorder associated with autism. Back then, there existed one published case study, without even giving it a name, and that was it. So I did not get diagnosed with this specific movement disorder, but it was certainly something they noticed when they finally diagnosed me with autism. They included the movement stuff in my diagnosis of central nervous system disorder not otherwise specified at the same time.
Then everything that happened to me in the psych system seriously garbled communication because they trained me, very explicitly, in saying what they wanted. I’d always had a tendency to communicate what other people seemed to say in a certain context rather than my own thoughts, but this was serious brainwashing and that took a huge toll. So did the medications they had me on, which were the wrong thing to give to anyone with this type of movement disorder. I felt like I was buried somewhere and almost like a robot had taken my place.
By the time I actually started using a communication device, I could talk sometimes and not others. But there was something else going on at the same time. I think it had to do with getting off psych meds and meeting other autistic people. It was like… I still had the mechanisms in my head that churned out words that didn’t mean much to me. I called them the Translator. But I also was beginning to meet people — not all autistic people, but some — who used words in ways that fit my experience of the world. At first those got stuffed through the Translator like everything else. But then I slowly started catching on to the idea that I could use words. As in me, not some mechanism. That I could force them to connect to thoughts and experiences in a solid way that was different from the indirect ways that had happened before.
I rapidly found out that this took serious work. I not only had to find and connect up the right words. I had to spot and deactivate the wrong words. It was like wrestling a greased pig. I also rapidly found out that I could stop the wrong words coming out much more easily in typing than in speaking. (Although to this day the wrong words will come out if I’m stressed or tired enough. Worse, because of all the mechanisms I learned growing up, they sometimes look very much like they ought to be the right words.)
As time went on, these communication abilities got better and better. But my ability to speak got worse and worse. And so did my ability to use my own words in speech. So these days I have no speech whatsoever most of the time, and the tiny bit of speech I do have is not communicative. (Fortunately for me, most of it doesn’t even look communicative anymore.) There’s the occasional word that will make sense but most don’t.
Now hopefully you can see why it takes so long to say all that. You normally hear about someone who never spoke, or spoke well, or some obvious point in between. People who start off with huge comprehension issues, and have different pieces of language skills maturing at different rates, often taking alternate routes to get to the same place, and with every single ability fluctuating wildly, plus a movement disorder… you don’t hear about that so often.
You’re also very lucky I was able to type this today because there are so many threads to the story it takes a lot of cognitive effort to piece them together. I have some very good communication skills these days, but to this day there are huge gaps in places that most people wouldn’t know to look. So my communication can be limited to certain topics, or to only things triggered by the right words or surroundings, or my actual ability to write fluctuates in huge ways one hour to the next. Writing this is possible right now but it’s still like walking a tightrope and I can feel strain from several directions. So even once you get communication that is absolutely completely real and fluent, there can still be huge problem areas, and the skills may only be there intermittently.
As far as your daughter — I don’t know her. And my route to communication was very different. So I don’t know if I have any advice. (If I do, it’s not going to be information I have access to after spending the afternoon at an art program, and then writing this.)
There are many different kinds of autism, and each one will involve different sets of communication skills. You can’t tell what kind it is by superficial traits. Like there are people with language and other skills in common with the stereotypical “aspie”, who can’t talk at all. The way I see it, what sort of autism you have has to do with cognitive and perceptual traits that are beneath the surface. But the surfaces can look quite different. (And most measures of severity involve surfaces, so do the official subtypes, so I don’t trust them at all to give any meaning to what a person is experiencing.) So there may be an autistic person out there, who (at this point in their life) can speak just fine, but who has far more idea what might be going on with your daughter than I do.
The thing about types of autism gets back to what I described earlier about how only some autistic people’s words helped me put together the final pieces to things. The more similar their experiences to mine, the more they helped. And I’ve found people similar to me under every diagnosis (autism, AS, PDDNOS), every functioning level label, and among people who use or don’t use words, and people who speak and people who don’t speak. There’s no official term for us and probably never will be — I see “type of autism” as just this huge structure in many dimensions representing our experience of various (inner) traits, where each person is a point on that structure, and their “type” is anyone within a certain distance of them in any direction. You won’t see that in the DSM anytime soon.
Even that is an approximation, since autism belongs to the land of abstractions and words, not the land of reality. But it’s closer to reality than many professionals seem willing to get.
Your writing appears to me as extraordinarily lucid. I teach at university and many of my students would be fortunate to have your sentence constructing and clear, idea conveying aptitude. If your writing and conceptualizing skills (in a language ‘not your own’) were as hard won as you claim, and your claims ring with plausibility, then I am in awe of your disciplined intellect.
I am particularly drawn to writers who wrote and published in languages that weren’t native to them – Joseph Conrad, Ha Jin, Nabakov. There is something to be said for the indirection that takes place form conscious analytical (as opposed to intuitional) understanding of language and its specific grammatical constructions. Your writing has the same sort of lucidity I prize in the writers I’ve listed.
For your information – I am technically (as I’ve never submitted a letter asking to be released from membership) a Quaker – Brooklyn Monthly Meeting NYC. I read somewhere in your texts that you attended Quaker meeting…so I felt moved to share my relationship with Friends.
I wish you good fortune – and hope that you have some idea of the admirable accomplishment that is apparent in your writing and thinking processes. As a long time professional visual artist I have come to believe, based on my own experience and observation of other practitioners, that creative impulse and its production comes from a sort of ‘ruthless gaze’. A willingness to look at things as they are. To forgo as much social-mediation and convention as is individually possible. And then to report, as best as one’s skills and circumstances allow, just what it is one sees…without adornment, decoration or timidity of spirit. I see that in your writing. Forgive me if I’ve assumed more than is seemly. I simply wished to tell you that I’m pretty sure you are a capita A artist.
every word you write about your experience with your autism has taught me so very much. It helps me to advocate for and support my son with more intellegant vigor. I have not seen blog posts from you in months, so i re-read much of your blog as it is still here. I hope you are managing well and if you are sharing your brilliant thinking on some other site, please let me know…i miss your insightful words on so many topics. gentle thoughts for you with luv, peace and love, xo
Wow. I was not expecting such an indepth response. Thank you. It was very enlightening and helpful.
I was searching for information about autistic parents who have children. I happened across some posts from this site, and was pleasantly surprised by the lucidity of exposition. I have a 20 year old daughter who is very high level functioning autistic. We adopted her at 8 days old, a very happy baby, the joy of our lives. At 18 months something happened, and it washn’t until she was 3 that we discovered it was autism. We did a lot of research, and by age 5 we had finally figured how to deal with the challenge. We home school her and she is now aboutthe equivalent, socially, of a 15 year old. I believe her development willprogress to the point where she will wish to marry…. And the question is: What kinds of outcomes are “typical” of children of autistic parents? There is a lot of talk of autistic children, but nothing on autistic parents and their children… Is there a place to go on this subject, that is reasonable? Are other people interested in this? If there is nothing on this topic, Should we start a site on it? With autism being an “epidemic” of 1 in 100 children, we need to be preparing for future family implications. Looking for direction. I love my daughter and want a future of great promise, no matter what effort it requires. Anyone with information or interest contact me through a follow-up comment.
No hard studies, but anecdata: I’ve heard of it working out okay. http://nitroglycerin-trucks.tumblr.com/ might know something. Spectrum parents are GREAT for spectrum kids. I know an autistic person who’s just become a parent, but, uh, I’ll have to get back to you on that in a couple of decades…
Of course, it depends on the person. Some people make good parents. Some make bad.
I think you’ll get better info from a bigger group. Try WrongPlanet, or try the askanautistic tag on tumblr.
Craig Spitler: There is at least one blog I’m aware of written by a parent who has I believe Asperger’s, called “Andrea’s Buzzing About” (not me, it’s another Andrea). She writes about a lot of things, so only some of her blog posts are about parenting (or maybe I should say “grandmothering” since her daughter is is now old enough to have a little one of her own).
There is also a group blog called the “Thinking Person’s Guide to Autism” in which some of the contributors over time have been autistic, some have been non-autistic parents of autistic children, and others have been autistic parents. Again, about many different things, so I’m not sure how easily you could find answers to your questions there. But perhaps a starting point for figuring out where to look next? I don’t read that blog regularly so I’m not intimately familiar with how it works, but I believe some of the contributors have their own blogs as well.
If there is a blog, or a central web site focused on parenting while autistic, then I’m not aware of it. I have occasionally seen web sites or resources targeted at parents with disabilities in general, for example parents with mobility impairments who are figuring out how to do things like put their baby to sleep when they can’t stand over a crib and put them down that way (there are special cribs that can be opened on the side and then very securely closed up again so the baby can’t fall out) and so forth. But I’m not sure if there is anything like this for autistic parents. So if you do find others interested in this, I’m sure a web site of this sort would probably help fill a niche.
Amanda, will you have a look at how the YMCA treat kids with autism?
Hi, I want to ask you if you are german (because of the title for your blog). I am and I try to blog in english too, because it is somehow easier than in german. I don’t know why, because my language-skill are better in german, but somehow it is nevertheless easier to say/write something (personal) in english. Is this the same for you?
I am aiming to raise awareness of Autism in the Middle East specifically in Oman and I am wanting to hold an awareness event which will be educational for parents, teachers and carers as well as have a fundraising element and a fun element for children and families, We are looking for speakers who we can bring to Oman who can hold talks or workshops.
If you or anyone else reading this blog would be interested in being involved please get in touch.
Thanks for the emails.
Oman is an interesting choice of focus. Any reason for that?
I attended an autism conference in Southern Utah, where a researcher spoke to us about the mechanisms of autism. I’m trying to contact the organizer of the conference to get connected to the researcher. He was touring the US from Great Britain. If I hear anything, I’ll let you know.
– Craig Spitler
hi, i took the liberty of translating and subtitling your ‘in my language’ video. i hope people in the portuguese-speaking countries will thud get to know more about your ideas and activism. here is the link: http://www.youtube.com/watch?v=NSIN82UP3ag cheers!
I don’t know what made me think of you today, but I wanted to thank you for making your “In My Language” video. It deeply touched me when I watched it several years ago. I was curious to see how you were doing and I am sorry things seem to have gotten tougher for you. I hope you are doing OK and wanted to wish you a Happy Holiday season.
All the Best,
First of all, you’re an amazing, AMAZING person. I love your mind. I love your words. I love your fire. And I am so happy I found your blog. I am not disabled and I find the universal application of your sentiments very fitting and empathic with my lived experiences as a queer woman of color. I’m blown away by the impact just a few of your posts have had on me. I’m happy to see I’m not alone in my thinking and feeling in this world. Thank you for the rawness of your authenticity.
Hi, Amanda. I’m an aspie scientist. I also own the ASC forum Gestalt, which you’ve been to on occasion. Over the last few years, my work has taken me much deeper into genetics involved in ASC and intellectual disability etiologies, particularly those that are syndromic in nature and involve symptoms in multiple organ systems. I was just wondering, has anyone done genetic testing on you?
Hi Mel, thank you for all you do making a difference for us all.
SOmewhere here on your site, you have talked about your movement disorder(s). Could you please help me by putting a link here to the pages where you are describing this? I have this too, and have never had anyone be able to describe it before> I am so grateful for your blog.
Please send me the link to your rebuttal of Happe’s “The Validity of Autistic Opinions”
Thanks so much!
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