Relay Beacon

I just want to take a minute to shoutout to my fellow disabled people who feel trapped in their body, or who may feel their body lets them down. Maybe sometimes you’re angry at your body or resent it for the things you can’t do. Maybe sometimes these posts remind you of these things and I just want you to know that you’re valid. Your feelings are valid.

You aren’t failing if body neutrality doesn’t work for you. I know it’s often said to be a good alternative if body positivity isn’t for you but you aren’t failing if you can’t get there.

https://www.reuters.com/world/middle-east/un-chief-hopes-israel-quickly-effectively-boost-gaza-aid-access-2024-04-05/

The United Nations said Tuesday it suspended food distribution in the southern Gaza city of Rafah due to lack of supplies and insecurity. It also said no aid trucks entered in the past two days via a floating pier set up by the U.S. for sea deliveries. The U.N. has not specified how many people have stayed in Rafah since the Israeli military began its intensified assault there two weeks ago, but apparently several hundred thousand people remain. The World Food Program said it was also running out of food for central Gaza, where hundreds of thousands of Palestinians fleeing Rafah have sought shelter in a chaotic exodus, setting up new tent camps or crowding into areas already devastated by previous Israeli offensives. Abeer Etefa, a spokesperson for the U.N’s World Food Program, warned that “humanitarian operations in Gaza are near collapse.” If food and other supplies don’t resume entering Gaza “in massive quantities, famine-like conditions will spread,” she said.

The prosecutor at the International Criminal Court cited Israeli Prime Minister Benjamin Netanyahu and Defense Minister Yoav Gallant for alleged “use of starvation as a method of warfare,” a charge they and other Israeli officials angrily deny. The prosecutor accused three Hamas leaders of war crimes over killings of civilians in the group’s Oct. 7 attack. The U.N says some 1.1 million people in Gaza – nearly half the population — face catastrophic levels of hunger and that the territory is on the brink of famine. The crisis in humanitarian supplies has spiraled in the two weeks since Israel launched an incursion into Rafah on May 6, vowing to root out Hamas fighters. Troops seized the Rafah crossing into Egypt, which has been closed since. Since May 10, only about three dozen trucks made it into Gaza via the nearby Kerem Shalom crossing from Israel because fighting makes it difficult for aid workers to reach it, the U.N. says. For months, the U.N. has warned that an Israeli assault on Rafah could wreck the effort to get food, medicine and other supplies to Palestinians across Gaza. Throughout the war, Rafah has been filled with scenes of hungry children holding out pots and plastic containers at makeshift soup kitchens, with many families reduced to eating only one meal a day. The city’s population had swelled to some 1.3 million people, most of whom fled fighting elsewhere. Around 810,000 people have streamed out of Rafah, although Israel says it has not launched the full-fledged invasion of the city it had planned. The United States has said Israel did not present a “credible” plan for evacuating the population or keeping it safe. The main agency for Palestinian refugees, UNRWA, announced the suspension of distribution in Rafah in a post on X, without elaborating beyond citing the lack of supplies. U.N. spokesman Stephane Dujarric said the UNRWA distribution center and the WFP’s warehouses in Rafah were “inaccessible due to ongoing military operations.”

This is very urgent so please share however you can. Islam, the mom of this family in Gaza, is eight months pregnant but has a fractured pelvis and therefore cannot give birth safely. She needs a C-section, but the conditions to perform those no longer exist in Gaza. For months women in Gaza have been getting C-sections without anaesthesia. We need to get her out before she goes into labor, which could happen at any time now. We're halfway through the goal and even if everyone just chipped in 5-10 dollars it adds up quick!

Their GFM

transcript: my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)

this written for instagram because of this post. but thought tumblr may like it too. “you” means general you, no one specific.

the instagram post and this on wordpress

this disclaimer is for instagram but also for anyone new to this discussion:

in full honestly, don’t know how to write this. am tired, language and complex ideas too much at time of writing, and general exhaust at having to argue same thing over and over again and justify own existence. tired of being minority within minority, wish there are others to do these work for me so i don’t have to do it all by self, singlehandedly advocate for everyone (not to mention problem with that—i can’t speak for everyone).

so honestly, if you don’t have anything nice to say, especially if you speaking (yes, even if you lose speech. include you), just don't say anything at all. move on.

online actually autistic community (AAut) dominated by white, lower support needs. level 1, speaking, late diagnosed, high masking autistics. find people like you is great, what not great is you treat your very narrow community as “voice of all autistic” and your experience as ultimate autistic experience. i write plenty about that, many more elaborate than this, if you not familiar with this concept.

many people in this community experience times when cannot speak, sometimes because overwhelm, shutdown, dissociate, or anxiety (situational mutism), but do not struggle with act of speaking rest of time (some struggle with speech all the time but still can speak - more on that later). the community call “going nonverbal/nonspeaking,” or even “when i am nonverbal nonspeaking” (not talking about those nonverbal as child and verbal now older), after clinical term “nonverbal” (nonverbal autism) and term coined by apraxic nonspeaking autistics “nonspeaking.”

both of which talk about it as an “all the time” experience.

when i search nonverbal or nonspeaking because i want community too, want see people like me too, two category i see: 1) parents of nonverbal nonspeaking children, whom can’t relate to because age, who can’t write own experience because their age and developmental ability. and 2) overwhelming amount of speaking autistic talk about going nonverbal going nonspeaking.

and the very very few fully nonverbal nonspeaking voices. drowned out. cannot find anyone.

nonverbal used to be term to describe us, people who can’t speak or cannot functionally speak beyond few words. medical term, alright, so some of us don’t like. so some of us reject that and create term all of our own, called nonspeaking. created by nonspeaking autistics with severe apraxia and brain body disconnect, describe their own experience of able to think in words able to spell out words (with great dedication and work and support), just cannot do that with mouth. their term. they create.

and you take it? without knowing context? without reading anything by those same nonspeaking coiners?

when is last time you purposely seek out nonverbal nonspeaking voices? when is last time you accidentally came across us? can you name any nonverbal nonspeaking advocate that talk about their experiences? one? two? three? a BIPOC person, a (specifically) Black person? a Black woman? a trans person? a physically disabled person? a person not from western world?

same narrative over and over. “i can speak for nonverbal autistic i understand their experience because i am autistic i can’t talk sometimes” no you cannot. as someone who was able to speak when young who lose speech (”go nonverbal”) but now have no speech to lose because full time nonverbal. no the experience not the same. not comparable. you gain it back. i don’t. you can explain with mouth words what happen when you get out. i can’t, i only have AAC. countless nonverbal nonspeaking people without AAC or sign cannot, at all. you never experience daily small and big struggle of casually being nonverbal all the time.

your experience of lose speech unique from my nonverbal. but if you so insist to compare and equate, you only guest to my experience, my daily life.

“when i go nonverbal and no one understand so have to force to speak” i cannot force words out. know you don’t mean to say this, and not saying you at fault for this, but nevertheless accidental perpetuate and reinforce idea that anyone who don’t speak can just be forced to speak if try hard enough. but often not how it works. and this exact harmful rhetoric devoid and delays nonverbal nonspeaking people given access to AAC, because “need try to force words out first, AAC unnatural so last resort.”

this may be new concept for you. new concept to instagram, to tiktok. to other places. it may seem i only one with this problem, “i once saw a nonspeaking person’s account and they don’t have problem.”

yeah, because we are not monolith. some nonverbal nonspeaking people don’t care. some nonverbal nonspeaking people may even welcome “go nonverbal nonspeaking” or “when i am nonverbal nonspeaking.”

but don’t be fooled into believe i only one. have many nonverbal/nonspeaking and/or higher support needs friends on tumblr, who talk about this who have been saying this for years. *years*. years before i joined. i am not creator, i only bring message here, because many of us are too high support needs too disabled to do anything else. many of us only stay on our small corner of tumblr because it most peaceful, because at least some listen, because least hostile, because need to defend our experience against our own community the least. (but it happens less doesn’t mean it doesn’t happen, we still exhausted.) many of us only stay on our small corner of tumblr because that all we can handle, or because we not allowed or shouldn’t be on other social media because age or abilities or both.

i cannot handle conflict i do not do well and i shouldn’t be here. but if not me, who else? if i don’t do it, who else is going to?

some nonverbal nonspeaking people and parents of them may question, why you start debate about useless term when so many nonverbal nonspeaking people don’t even have access to communicate, real problems. to that i say i do those work too. and to that i say this is real problem too, because am autistic so online actually autistic community should also be my space too but it not. but it hostile. because am lonely because seeing yourself so crucial because don’t know anyone in person like me don’t have any friends in person like me, so i go online to find people like me and i cannot because no own term to search and what used to be term many people without similar experience insist they understand and can speak for me because they say we have similar experience. because this aloneness and the unique difficulty from being full time nonverbal and the struggle of future and the unique mistreatment from both outside but also inside community have drove me over edge many times and it is presence and knowing their presence of my tumblr nonverbal nonspeaking / higher support needs friends that gave me hope to stay. because so many people don’t listen and instead speak over. terminology only a symptom of problem. address roots, sure, but part of address roots is address symptoms.

‘well nonverbal people are never around” maybe it because you don’t make it welcome for us to join.

“fully nonverbal rare anyway” estimated 30% of us nonverbal nonspeaking, which this statistic probably only count those nonverbal since birth. even more are minimally speaking or without full functional communication, abilities limited to requests. sure, 30% still not majority. but significant amount never the less. speaking lower support needs autistic without intellectual disability not majority anyway too but your experience still deserve heard. ours too.

“see less nonverbal people because they don't have ability to communicate and use social media” yes, many nonverbal nonspeaking people not given access to communication (like AAC), forced to live in silence (because body language communication not enough alone!). silence from birth to teenage years, to adulthood, even until they die. some cannot understand social media or AAC because intellectual disability or cognitive ability. some not allowed on there because safety, some not allowed on because presumed incompetent and abused. all true. do you advocate for them too? or is it just talking point against me, pretend you care?

but not all of us, we exist. some of us thankfully supportive parents all along, parents given resources, us given resources, so we access to AAC since beginning. some of us became nonverbal later in life (which not same experience as those early in life, i acknowledge). some of us after years of forced silence, finally given access to AAC and can now communicate and advocate! some of us on social media - do you listen?

but you see none of us in your community anyway. maybe one token person.

you can go nonverbal. i cannot go verbal. see difference? you can come close to my experience, but i never will have (future) ability to go to yours.

it frustrate that have to specify am nonverbal **all the time** when write this, because if don’t do that will be assumed otherwise. frustrate that when in neurodivergent space stranger see me AAC they assume i can speak because they only know part time users (know part time users frustrate too because people assume they cannot speak and get surprised when they do. me being assumed automatic part time is not fault of part time AAC users.)

even been told am privileged to be nonverbal nonspeaking, privilege over speaking autistic who lose speech because in their mind it mean i get all support i need i get all recognition get all the representation. which. couldn’t be farther from truth.

all that. is fraction of reason i frustrate at “going nonverbal nonspeaking” and “when i was nonverbal nonspeaking.”

so many other words. lose speech. intermittent speech.

not every mention of their person is the saddest part of their day. sometimes saying "this was their favorite song" "oh they would have LOVED this" "God I wish they could hear the conversation happening at the next table" "I wish they were here" is lighthearted. the mention of their person can be joyful. or melancholic. or, of course, sad. it can be all of those things at once. but no matter, react to the sentiments as just another piece of the conversation.

you don't need to drop a 55 pound weight onto the conversation and stare at us in pity or silently stare in a combination of confusion and discomfort and sadness.

it's okay. we know they're dead. you acknowledging that in an equal state of nonchalantness will not shock us to death, it's not tasteless or crude. it's a relief. our dead people are still parts of our lives just like anything else, and giving your loved ones the space and comfort and safety to talk about their person is huge.

you can always respond by asking to hear more, by mimicking their tone. your friend laughs and says "they would have LOVED this", take it as a chance to learn why! was their favorite color yellow? did they love kitschy little throw pillows? did they utterly DESPISE kitschy throw pillows? are they referencing a specific story?

if they see someone that looks like their person and get a little sad, ask what reminds them of their person. what was their favorite feature of their person? does it make them mostly sad to see someone who looks like their person? did it make them feel a little bit happy for a moment?

we want to talk about our deceased loved ones. we yearn to mention people who shaped us. the way our society has conditioned us to behave around grief, to respond to the grieving, and to grieve ourselves is so backwards and void of empathy, so we often don't say what we wish we could say. (bell hooks has a wonderful chapter on this in all about love, new visions (ch 11))