Autistic, disability blogger Amanda (Mel) Baggs died Apr 2020
January 1, 2021 10:59 AM Subscribe
NYTimes obit: Previously on Metafilter, Amanda (Mel) Baggs died in April of 'respiratory failure.' They were (very) famous for short In My Language, ballastexistenz and their Youtube blog silentmiaow.
Mod note: Hi kfholy, moderator here. To get a post edited, you can flag your post with the [!] or drop us a note at the Contact Form linked in the bottom right corner of every page. Just now, I've edited it to remove the word "non-verbal", let me know if you need another edit.
posted by LobsterMitten (staff) at 11:03 AM on January 1, 2021
posted by LobsterMitten (staff) at 11:03 AM on January 1, 2021
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posted by limeonaire at 11:16 AM on January 1, 2021
posted by limeonaire at 11:16 AM on January 1, 2021
The YouTube blog link doesn't go to anything.
posted by The Pluto Gangsta at 11:16 AM on January 1, 2021
posted by The Pluto Gangsta at 11:16 AM on January 1, 2021
How long did Mx. Baggs live in Vermont?
posted by doctornemo at 11:55 AM on January 1, 2021
posted by doctornemo at 11:55 AM on January 1, 2021
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Reading the ballastexistenz blog led me to a lot of autism and disability blogs, which were real mind-expanders for me.
Thank you, Mel. I'm sorry you're gone.
posted by inexorably_forward at 12:09 PM on January 1, 2021 [2 favorites]
Reading the ballastexistenz blog led me to a lot of autism and disability blogs, which were real mind-expanders for me.
Thank you, Mel. I'm sorry you're gone.
posted by inexorably_forward at 12:09 PM on January 1, 2021 [2 favorites]
I also read ballastexistenz and learned a lot about disability and language from Mel. So sorry to hear of their death.
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posted by hydropsyche at 12:16 PM on January 1, 2021
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posted by hydropsyche at 12:16 PM on January 1, 2021
Also previously here.
silentmiaow’s insights had a profound effect on my understanding of many facets of language, cognition and relating among divergent abilities. Not sure I thanked them adequately then; I’ll be forever grateful.
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posted by progosk at 1:04 PM on January 1, 2021 [2 favorites]
silentmiaow’s insights had a profound effect on my understanding of many facets of language, cognition and relating among divergent abilities. Not sure I thanked them adequately then; I’ll be forever grateful.
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posted by progosk at 1:04 PM on January 1, 2021 [2 favorites]
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posted by The Great Big Mulp at 1:04 PM on January 1, 2021
posted by The Great Big Mulp at 1:04 PM on January 1, 2021
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posted by The Underpants Monster at 1:32 PM on January 1, 2021
posted by The Underpants Monster at 1:32 PM on January 1, 2021
Reading the earlier Mefi link is...whew. People arguing earnestly against the idea that every person has intrinsic value.
posted by praemunire at 1:55 PM on January 1, 2021 [8 favorites]
posted by praemunire at 1:55 PM on January 1, 2021 [8 favorites]
Reading the earlier Mefi link is...whew.
I only read partway through and had to quit. The assertion that someone who was truly autistic would not be able to articulate what autism is like, approvingly quoting Baron-Cohen's 'extreme male brain' hypothesis, so many neurotypicals offering their hot takes... I'm glad Mefites have improved since then.
posted by LindsayIrene at 2:48 PM on January 1, 2021 [6 favorites]
I only read partway through and had to quit. The assertion that someone who was truly autistic would not be able to articulate what autism is like, approvingly quoting Baron-Cohen's 'extreme male brain' hypothesis, so many neurotypicals offering their hot takes... I'm glad Mefites have improved since then.
posted by LindsayIrene at 2:48 PM on January 1, 2021 [6 favorites]
More Mel to read is always good:
their Tumblr blog is With A Smooth Round Stone.
Mel said that the density and depth of Ballastexistenz was making it hard to write, so they hosted Cussin and Discussin on Wordpress.
I was lucky to meet Mel online in the late 90s, and I learned so much from them. The end of their life came way too soon -- never let your friends go into the hospital unescorted by an advocate.
posted by Jesse the K at 4:19 PM on January 1, 2021 [6 favorites]
their Tumblr blog is With A Smooth Round Stone.
Mel said that the density and depth of Ballastexistenz was making it hard to write, so they hosted Cussin and Discussin on Wordpress.
I was lucky to meet Mel online in the late 90s, and I learned so much from them. The end of their life came way too soon -- never let your friends go into the hospital unescorted by an advocate.
posted by Jesse the K at 4:19 PM on January 1, 2021 [6 favorites]
The 'respiratory failure.' link goes to their Wikipedia page, but not (say) a section specific to respiratory failure.
posted by stevil at 6:18 PM on January 1, 2021
posted by stevil at 6:18 PM on January 1, 2021
As someone who works as a direct support for both autistic adults and children, this is a fantastic resource - great post!
posted by Lipstick Thespian at 6:16 AM on January 2, 2021
posted by Lipstick Thespian at 6:16 AM on January 2, 2021
That Wikipedia page leaves a really bad taste behind. Someones who know Baggs' work and have the "references needed" should go in there and spruce things up.
posted by heatherlogan at 7:11 AM on January 2, 2021
posted by heatherlogan at 7:11 AM on January 2, 2021
I just realized Mel was verbal.
I think it would be more accurate to say that Mel was verbal during some parts of their life and non-verbal during others. Or better, speaking and non-speaking. The term "non-verbal" tends to lead people to jump to the conclusion that non-verbal means without language, when really it just means not speaking with their mouth. Non-speaking people can often be eloquent and voluminous writers. A person fully fluent in sign language would also be described as "non-verbal".
I am usually a pretty verbal person but I experience spells of non-verbalness, associated with what's known as a "shutdown" in the autistic community. For me, these seem to be caused by a mental overload due to stress, tiredness, overwhelm, excessive socializing, or things like that, and they can happen suddenly and without warning. My most recent one was on December 25th from about 7:30pm to midnight. While I could still think, including in words, and was fully aware of my surroundings, I could not speak -- it's like that part of my brain was just unplugged from the rest. I also couldn't really do anything physical or complicated. It comes with a feeling of overwhelming exhaustion, and I wound up sleeping it off on the couch. And yes, this can be extremely dangerous if it happens outside a safe environment.
Seeing them change from being articulate, very verbal person who was very active in all their classes, to what they became later, was heartbreaking.
I wonder if this was an instance of autistic burnout. Autistic burnout is well-known and much discussed in the autistic community, but was discovered by academic psychology only about two years ago. It can be profoundly disabling.
The assertion that someone who was truly autistic would not be able to articulate what autism is like
Ah, the "no true Scotsman" fallacy.
posted by heatherlogan at 11:49 AM on January 2, 2021 [5 favorites]
I think it would be more accurate to say that Mel was verbal during some parts of their life and non-verbal during others. Or better, speaking and non-speaking. The term "non-verbal" tends to lead people to jump to the conclusion that non-verbal means without language, when really it just means not speaking with their mouth. Non-speaking people can often be eloquent and voluminous writers. A person fully fluent in sign language would also be described as "non-verbal".
I am usually a pretty verbal person but I experience spells of non-verbalness, associated with what's known as a "shutdown" in the autistic community. For me, these seem to be caused by a mental overload due to stress, tiredness, overwhelm, excessive socializing, or things like that, and they can happen suddenly and without warning. My most recent one was on December 25th from about 7:30pm to midnight. While I could still think, including in words, and was fully aware of my surroundings, I could not speak -- it's like that part of my brain was just unplugged from the rest. I also couldn't really do anything physical or complicated. It comes with a feeling of overwhelming exhaustion, and I wound up sleeping it off on the couch. And yes, this can be extremely dangerous if it happens outside a safe environment.
Seeing them change from being articulate, very verbal person who was very active in all their classes, to what they became later, was heartbreaking.
I wonder if this was an instance of autistic burnout. Autistic burnout is well-known and much discussed in the autistic community, but was discovered by academic psychology only about two years ago. It can be profoundly disabling.
The assertion that someone who was truly autistic would not be able to articulate what autism is like
Ah, the "no true Scotsman" fallacy.
posted by heatherlogan at 11:49 AM on January 2, 2021 [5 favorites]
As a point of fact, my initial headline was 'Non-verbal autistic, disability blogger..' Mel was reportedly more verbal later, so they politely fixed't
posted by kfholy at 12:30 PM on January 2, 2021 [1 favorite]
posted by kfholy at 12:30 PM on January 2, 2021 [1 favorite]
I don't think I can articulate how much of a profound influence their writing at ballastexistenz had on me in the early aughts. I can turn round and see books on the shelf behind me that I found out about via Mel. I hope I properly expressed my gratitude to them at the time, but I don't think I did.
There's a post from Mel in 2006, "Let's play assumption ping-pong!" which includes assumptions about communication. I can't summarise, but I do want to pick out a long quote:
"My life is an extreme departure from stereotype. It is not the form of departure from stereotype that is easily resolved by taking on another stereotype, because it pokes right through all of them and all the edges. It is not that my life story is all that unusual — I have had people mistake me for several other people with similar life stories — but that this kind of life does not fit any prevailing stereotype of autism or even of human functioning in general, and it does not fit in a really, really big way.
It is easy for people to assume that I am simply stubborn and wish to refuse to be pigeonholed. Actually, a nice pigeonhole to settle down in would sometimes be very comfortable and inviting. There are just none that actually come close to fitting my life. So I can’t use any for very long, even if I want to.
It would also be easy, in a way, to just let people assume, and in many cases I do, because there’s no possible way of conveying everything in a short time. It is utterly exhausting to be slapped in the face with people’s accusations and assumptions based on the way my life and body won’t bend to what they want it to bend to. It is utterly exhausting to watch people play ping-pong with stereotypes, to correct people only to have them bounce to an opposite stereotype that is no more true than the first one.
If it were just about me, I might leave it at that. I might say, “It doesn’t matter that some people assume just by my writing that I fit their ‘high functioning aspie’ stereotype, and others assume by what I write about that I fit their ‘low functioning autie’ stereotype, and so forth. I know who I am, my friends know who I am, that’s what’s important.” And in a way, it is.
But it isn’t just about me.
A lot of things about autistic people’s lives are decided on the basis of assumptions like these. If some of us are able to make visible the discrepancies between the assumptions on how our bodies work, and the reality, then it makes us more visible as people and less as caricatures. There is something quite important about that. About saying “Hey, wait a minute, we will not be buried under your cardboard cutouts, we are real people, and we exist! We exist in more diversity than you may even want to know.”"
When I found out via Twitter about their death in April I was saddened but not surprised. The system had been trying to kill them for years, and there were many years where we could have ended up reading their obituary and did not only because of personal and wider networks of resistance.
Truly, Rest In Power.
posted by Vortisaur at 1:43 PM on January 2, 2021 [9 favorites]
There's a post from Mel in 2006, "Let's play assumption ping-pong!" which includes assumptions about communication. I can't summarise, but I do want to pick out a long quote:
"My life is an extreme departure from stereotype. It is not the form of departure from stereotype that is easily resolved by taking on another stereotype, because it pokes right through all of them and all the edges. It is not that my life story is all that unusual — I have had people mistake me for several other people with similar life stories — but that this kind of life does not fit any prevailing stereotype of autism or even of human functioning in general, and it does not fit in a really, really big way.
It is easy for people to assume that I am simply stubborn and wish to refuse to be pigeonholed. Actually, a nice pigeonhole to settle down in would sometimes be very comfortable and inviting. There are just none that actually come close to fitting my life. So I can’t use any for very long, even if I want to.
It would also be easy, in a way, to just let people assume, and in many cases I do, because there’s no possible way of conveying everything in a short time. It is utterly exhausting to be slapped in the face with people’s accusations and assumptions based on the way my life and body won’t bend to what they want it to bend to. It is utterly exhausting to watch people play ping-pong with stereotypes, to correct people only to have them bounce to an opposite stereotype that is no more true than the first one.
If it were just about me, I might leave it at that. I might say, “It doesn’t matter that some people assume just by my writing that I fit their ‘high functioning aspie’ stereotype, and others assume by what I write about that I fit their ‘low functioning autie’ stereotype, and so forth. I know who I am, my friends know who I am, that’s what’s important.” And in a way, it is.
But it isn’t just about me.
A lot of things about autistic people’s lives are decided on the basis of assumptions like these. If some of us are able to make visible the discrepancies between the assumptions on how our bodies work, and the reality, then it makes us more visible as people and less as caricatures. There is something quite important about that. About saying “Hey, wait a minute, we will not be buried under your cardboard cutouts, we are real people, and we exist! We exist in more diversity than you may even want to know.”"
When I found out via Twitter about their death in April I was saddened but not surprised. The system had been trying to kill them for years, and there were many years where we could have ended up reading their obituary and did not only because of personal and wider networks of resistance.
Truly, Rest In Power.
posted by Vortisaur at 1:43 PM on January 2, 2021 [9 favorites]
I'm glad Mefites have improved since then.
I... am not sure we have, based on the exhausting conversations I've been part of around autism here. Folks leave. I keep sitting with this comment and thinking about the implication that, what, Baggs' autism was caused by excessive LSD use(?) sitting here more or less unchallenged until heatherlogan felt like sharing more context. (I keep thinking about me sitting here, feeling exhausted and quiet, trying to articulate why I feel so appallingly vulnerable about the porous boundary of "verbalness" when it comes to describing experience.)
I keep thinking about threads about the impact of ABA that dissolve into discussions of whether it's all right for parents to monopolize the conversation. I think about the autistic voices that I knew were here and who have left or have been asked to leave. I think about exhausting discussions we have had here on pretty much every thread by or about autistic people here. I think about the hunger for frank discussions of autistic experience I see when the topic comes up here, and the painstaking fragility surrounding that.
I wouldn't rush to pat ourselves on the back for how far we've come. And I'm sad, because I looked up to Baggs as a kid and as a young adult, and now they are dead. Well after they became what they became later, they were changing lives and broadening minds and leaving fingerprints on the world.
I wish I had a better epitaph.
posted by sciatrix at 3:20 PM on January 2, 2021 [15 favorites]
I... am not sure we have, based on the exhausting conversations I've been part of around autism here. Folks leave. I keep sitting with this comment and thinking about the implication that, what, Baggs' autism was caused by excessive LSD use(?) sitting here more or less unchallenged until heatherlogan felt like sharing more context. (I keep thinking about me sitting here, feeling exhausted and quiet, trying to articulate why I feel so appallingly vulnerable about the porous boundary of "verbalness" when it comes to describing experience.)
I keep thinking about threads about the impact of ABA that dissolve into discussions of whether it's all right for parents to monopolize the conversation. I think about the autistic voices that I knew were here and who have left or have been asked to leave. I think about exhausting discussions we have had here on pretty much every thread by or about autistic people here. I think about the hunger for frank discussions of autistic experience I see when the topic comes up here, and the painstaking fragility surrounding that.
I wouldn't rush to pat ourselves on the back for how far we've come. And I'm sad, because I looked up to Baggs as a kid and as a young adult, and now they are dead. Well after they became what they became later, they were changing lives and broadening minds and leaving fingerprints on the world.
I wish I had a better epitaph.
posted by sciatrix at 3:20 PM on January 2, 2021 [15 favorites]
Much honor to Mel Baggs for the care and creativity they shared with the world.
This 2016 post "There is ableism somewhere at the heart of your oppression, no matter what your oppression might be" is one I will return to over and over again.
I just read a bit of their cat blog and am now hoping that Fey is well and with someone to snuggle! Thank you kfholy for the post.
posted by spamandkimchi at 9:20 AM on January 3, 2021
This 2016 post "There is ableism somewhere at the heart of your oppression, no matter what your oppression might be" is one I will return to over and over again.
I just read a bit of their cat blog and am now hoping that Fey is well and with someone to snuggle! Thank you kfholy for the post.
posted by spamandkimchi at 9:20 AM on January 3, 2021
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posted by kfholy at 11:00 AM on January 1, 2021