#learning disabilities advocacy groups

[cripplerage]

I'd like to talk about this:

{Image ID: A cropped screenshot of an online form with a purple background. The question is "What is your gender identity (click all that apply)." The options are "Woman," "Man (disqualify)," "Feminine-Identifying," "Non-Binary," "Transgender," "Unsure," "Prefer not to say," and "Other." The other option has a text box, and they all have unchecked check boxes. End ID.}

This is an application form for an advisory/advocacy group for the intersectionality of woman/female experiences for disabled people. If you somehow figure out WHICH group this is, please do not contact them in any way. I would like to have the opportunity to calmly and politely give my feedback to them, and an accidental harassment campaign would not help. And of course, they're not really doing anything wrong, they're trying their best, etc. my intention with this screenshot is to use it as a learning example.

Here's the thing... They are clearly trying to be inclusive and acknowledging the gender spectrum, but they're acting as if it's a bar that they can just take one half and leave the other. But as a non-binary person who is also sort of a trans-man, who appears fully as a woman and is perceived as a woman by the general public and the healthcare system, this just doesn't seem to work.

For the form I only ticked non-binary, and I listed my pronouns as they/them, when I usually use he/they. And I don't think of this as lying because my gender is a bit fluid, but also I sort of think that it would be my right to lie in this situation because I deserve to participate in this discussion?

I think we as a society seem to forget that most trans men were raised as women, and do have women-aligning experiences. And most of us don't have male privilege, and the few that do have it immediately negated in situations like healthcare. Being transmasc never prevented me from experiencing ableism or medical mysoginy. And I don't know for certain but I imagine some intersex men, even if they're cis, deserve to be part of this conversation, too.

I think what I'm saying applies to more intersectionalities than just disability, but I don't think it's really my place to talk on that. And don't get me wrong, I do think that discussions about feminine intersectionality are important. Here's what it comes down to - I think we need to just let individuals decide for themselves if they are eligible for certain discussions. I don't know for certain what the best way to do this, but I suggest something like the following:

"This group is centred around the experience of intersectionality between femininity and disability. You may be eligible for this group if you are a cis woman, transgender, or intersex."

I'm open to suggestions or feedback on that.

Tl;dr: gender identity and gender experience are different. Someone's gender identity does not necessarily mean that they should be excluded from discussions regarding lived experience of another gender.

[cy-cyborg]

We have communities - Writing disability quick tips

So often, stories centred on disabled characters, especially in modern settings, emphasise how lonely or isolated the character is because of their disability, especially if it’s a newly acquired disability or one that non-disabled people assume would have a big impact on our ability to do “fun stuff”. This will often be accompanied by statements of “no-one understands what living with [insert disability here]” is like!

And while isolation and loneliness are things a lot of disabled people deal with, a lot of us are not completely alone either, especially in the modern day.

Just like any group of people with shared experiences, we find one another. Sometimes this is through formal systems; some spinal rehabilitation centres for example, will pair newly paralysed people up with a mentor who’s had a similar form of paralysis for much longer to help guide the person while the adjust to their new disability. Other more formal systems can look like disability sporting organisations - the one I used to work for used to specifically encourage very newly disabled people to join so they didn’t feel like the had to learn everything about their disability alone, or support groups.

Other times though, these communities are much less formal. They may look like online forums, such as the ones on Reddit, built by and for disabled people to talk about their experiences and seek recommendations from others in the same boat, or parts of larger social media sites. For example, on Tumblr, there aren’t really any formal groups, but thanks to the hashtags we use in our posts, we often find one another fairly quickly there. We sometimes also carve out our own little subsections of fandom or hobby spaces, brought together by the shared interest itself, how things like disability might impact the way you interpret or interact with it, and how we can modify it (in the case of hobbies) to make it work for us.

A lot of disability communities, formal or otherwise, also form out of necessity, such as advocacy groups run by and for disabled people, and those built around ensuring the rights of disabled people are protected.

Isolation and loneliness are problems within the disabled community that many of us deal with, but this tends to be more in the context of isolation from the wider public, exclusion from public spaces and events (despite there being laws that are supposed to stop this because they’re often not enforced), disconnect from non-disabled friends and family, etc, most of which are the result of systematic issues or the lack of understanding or care and support from non-disabled people in our lives. Not always, but often.

The communities made by and for disabled people though are often (at least in part) made to help make up for this, and they’re more common than you might think, you just have to know where to look. It would be nice to see more creators reflecting this in their work a bit more often, or at least acknowledging that they are there, even if your character chooses not to engage with them.

However, as a reminder to authors and creatives: These communities, especially the online ones, are for disabled people, they are not there for you to use as a reference as a creator. Some communities are ok with you being there to learn, so long as you listen and don’t try to speak over/bombard their members with questions. Others are not. The ones that are, typically will have something written somewhere if it’s online (e.g. subreddits that accept writers wanting to write disabled characters will often have it written in the “about” section or the rules). There are also dedicated groups and platforms for non-disabled people seeking to learn more about us and our communities, which can be excellent resources for creatives like writers. Just remember to be mindful of where you are and respectful of people’s spaces and boundaries when doing your research.

[five-thousand-loaves-of-bread]

my issue with right now AAC advocacy, nonspeaking (autistic) advocacy (from individual advocate, to organization like communication first and assistive ware) (mainly outside tumblr), can all be summarize by their one phrase:

“presume competence.”

“wait, what wrong with that? isn’t it good? don’t they follow that?”

half yes. idea is good, hope everyone follow it, must: all disabled people should be give tool & help to learn, all diagnoses, all amount of struggle.

yes, “even” that person diagnose with severe autism & profound ID, who never speak or look like show sign of understand any language, who scream and make noise and run away all time, who give self & other many injury and broke bone and concussion.

but. me problem not with idea. have problem with, use two big complicate word as basic key important idea for movement: a movement for those who hard speech & communication.

this group, naturally mean have many people (more than “average” amount), who hard communicate, hard communicate big words, hard remember big words, hard understand big words.

“then just change name or explain idea, why say it summarize problem with entire movement?”

on tumblr, AAC user community, semi- & nonverbal/nonspeaking community, see lot people who not just struggle with mouth say word, but also with communicate hard. although less, and most borderline or mild, but do have a few people with ID who talk about ID. people with many layer disability, more affected. in fact, in some corner, we loud & seen here in community.

but. outside tumblr—like twitter, where majority AAC & nonspeaking advocacy get most hear, often influence even new AAC apps and AAC company and non profit and (US) law and (US) government groups. but also different organizations, and real life. so basically, people with bigger real life influence. this opposite.

it many life-long nonspeaking autistics with severe motor apraxia, who brain body disconnect cause mouth not able move make noise in way brain want. often diagnose with severe ID back when not able communicate, but now able full communicate, now realize have high IQ, use long sentence, complicate grammar, big words, who can “write right.” many who not be teach communicate or read, but able learn how read write, by self.

—who not speak because motor struggle, but “mind intact” (their word not mine), no fundamental expressive receptive language understand issue (edit: outsude not mouth speak), no intellectual cognitive issue?

they nonspeaking. they AAC user, or speller. yes, they deserve be in community. must be heard. people must realize this form of nonspeaking possible and many people like this. AAC nonspeaking community without them is still leave out people.

but. right now problem is: both them and allies, treat this form nonspeaking as only way be nonspeaking. all nonspeaking people like this. and what this group want (like be call nonspeaking and nonverbal wrong), need apply to all people who not able speak, because they seen as entirety nonspeaking community.

“all nonspeaking (autistic) people like this”—many times imply by never ever mention other “not speak” experience, but sometime even direct say (paraphrase). where my “not speak” friends who have expressive receptive language issues, who trouble communicate even with AAC, who don’t understand other and self communicate at all, who “mind not intact” (whatever that means), who ID not misdiagnose but is actual severe profound ID, who can’t learn AAC can’t ever functional communicate ever?

what about people who “not speak” not just because “motor but everything else fine,” but “motor AND expressive receptive language AND/OR intellectual”? people who don’t have all your abilities?

we not remembered. we not exist. we not talk about.

and this “ignore,” can be see in all area of their advocacy and movement.

the policing “no severe no functioning labels no levels no nonverbal ever they all bad no excuse”: all my friends who call own self by any of that been direct attack harmed many many times by people who say this, so no, there no “personal identify okay” exception. this silence us. anytime we mention how we dare call self, all what we actual say ignored, actual message ignored, and become argue over terms call us ableist, and lock us out block us crowd attack us harrass us—us with communication issues who words hard first place, and who often have big emotional regulate struggle.

harass us lock us out enough. of course we silent, of course we no longer write in community. of course “community” no have us, no one see us. no one know we exist.

the big words. complicate sentences. complicate ideas. everything confuse. overwhelm even parents without intellectual & communication struggles who want learn to help child. not to mention us, who “not speak” include receptive language issues and intellectual disability.

write enough big words. write enough complicate stuff. write enough confuse hard follow stuff. of course we who can’t understand that get frustrate. and stop read. stop be in community.

have ability write professional enough, write approximate closest to nondisabled people enough. not have ID. all advantages that make people listen you more, take you more seriously. but this advantage, or fact this even is advantage that some not have, they not recognize.

whether mean to or not. became “am nonspeaking and proud, but at least have high IQ mind intact and can write ‘normal,’ so still have worth still deserve listen to because still have those redeeming abilities.” —what about those us who don’t?

“what that do with term ‘presume competence’?”

presume competence key idea, root of movement & advocacy.

presume competence, big words, not everyone who struggle speak can say/speak/write/communicate these two words. not all can remember. not all understand. some, will never ever able communicate or understand these two exact words ever in life, even with best support most help.

key slogan of movement, inaccessible to group of people you claim advocate for. same group people you also ignore pretend not exist erase in your advocacy.

this how deep this exclusion and inaccessibility issue run in nonspeaking advocacy.

down to its roots.

[this about nonspeaking movement (especially outside tumblr) and people who do this exclusion + inaccessibility. this not say term nonspeaking bad or all individual nonspeaking person bad.]

[psychhound]

disability & mental health resources for gamers

hey all! so my day job is that i'm a social worker for neurodivergent people, and my (very awesome) boss asked me to put together a list of resources for our clients about gaming. this list focuses on video games, not TTRPGs, but i still wanted to share it here since there's so much overlap between our communities!

spreading this list is much appreciated. i am a game lover to the end but there is a lot of work our community needs to do for it to be as accessible, positive, and supportive as possible! you never know who might benefit from something on this list

resource list:

Games for Change - an organization that aims to promote a better world through gaming. Includes a curated list of games (with an accessibility features search) that promote growth or better mental health, or are disability accessible

Take This - decreasing stigma and increasing understanding, support, and resources for mental health in the gaming world. Includes mental health resources and consulting

Dager System - a disability in gaming journalism site that does educational videos, accessibility reviews, and has a searchable accessibility database (acquired "can I play that")

Taming Gaming (/ The Family Gaming Database) - an online searchable database designed to help parents and caregivers navigate good games for their kids. Includes curated lists of games for lots of different categories, including emotions and themes

Disability accessible game lists

Mental health game lists

Autism friendly games

AbleGamers - a charity making video games more accessible to the disability community. Includes consulting and adaptive technologies

Autistica Play - a branch of Autistica that aims to make video games more accessible to autistic people and educate game designers about autism

Autistic Gaming Initiative - streamers who raise funds for autistic led advocacy groups

Spectrum Gaming - an online / discord based community and advocacy group to unite autistic youth in gaming. lead by an autistic adult, but run by the autistic youth themselves

if people know of more, or know of orgs that focus on other disabilities (i mainly work with autistic people) please feel free to shoot them my way so i can update the list! using games to improve our lives and our world is a big passion of mine so i always appreciate learning about cool initiatives out there!

[fandomtrumpshate]

FTH 2024: Supported Nonprofit Organizations

Here are the nonprofit organizations that will be supported by this year's FTH auction. Many of these orgs will be familiar from last year's list, but we've cycled in some new groups as well. In particular, because it's a major election year in the US, we've brought in (or brought back) organations focusing on voter enfranchisement.

If you are a FTH creator and you want to ask your bidders to support an organization that’s not on the list, please read our policy on outside organizations here.

Bellingcat *

Bellingcat is an independent investigative collective of researchers, investigators and citizen journalists brought together by a passion for open source research in the public interest.

Civil Rights Education and Enforcement Center *

The Civil Rights Education and Enforcement Center (CREEC) is a nonprofit legal organization that fights for liberation and equity through the lens of intersectional disability justice.

In Our Own Voice: National Black Women’s Reproductive Justice Agenda *

A national-state partnership focused on lifting up the voices of Black women leaders at the national and regional levels in our fight to secure Reproductive Justice for all women, girls, and gender-expansive individuals, NBWRJA delivers proactive advocacy and policy solutions to address issues at the intersections of race, gender, class, sexual orientation and gender identity.

Life After Hate

LAH provides support to people leaving hate groups, and providing pluralism education and training to vulnerable young people.

Middle East Children's Alliance *

MECA is a nonprofit organization working for the rights and the well-being of children in the Middle East. They collect funds in order to provide direct aid, financial support for community projects, water purification systems, and university scholarships, and also create educational and cultural programs in the US and internationally to increase cultural understanding.

National Network to End Domestic Violence *

NNEDV offers a range of programs and initiatives to address the complex causes and far-reaching consequences of domestic violence.

Never Again Action *

A Jewish-led mobilization against the persecution, detention, and deportation of immigrants in the United States, NAA takes on campaigns against detention centers and ICE training programs, and organizes mutual aid and deportation defense.

Razom *

Razom initiates short and long-term projects, or collaborates on existing projects with partner organizations, which help Ukraine stay on the path of fostering democracy and prosperity

Sherlock’s Homes Foundation *

SHF provides housing, employment opportunities, and a loving support system for homeless LGBTQ+ young adults so that they can live fearlessly as their authentic selves. Within these homes, young adults learn about responsibility, accountability, financial independence, life skills, and how to love themselves

Spread the Vote

STV helps eligible voters make their voices heard through voter education, supporting voters through the process of getting necessary ID, and advocating against voter suppression laws.

Violence Policy Center *

VPC works to stop gun death and injury through research, education, advocacy, and collaboration; exposes the profit-driven marketing and lobbying activities of the firearms industry and gun lobby, and offers unique technical expertise to policymakers, organizations, and advocates.

VoteRiders

VR works to help all citizens exercise their right to vote. It informs and helps citizens to secure their voter ID as well as inspires and supports organizations, local volunteers, and communities to sustain voter ID education and assistance efforts.

Umbrella: Environmental orgs

For the past four years, FTH has supported one “umbrella” cause: we invite participants to donate to their own local grassroots organization, while also suggesting a handful of exemplary organizations working in communities where the need is especially acute. This year our umbrella category is environmental organizations.

Pollinator Partnership *

Deploy/Us *

Together Bay Area

Wildlands Restoration Volunteers

Coral Restoration Foundation *

++

Organizations marked with an asterisk (*) allow for international donations directly through their websites. The orgs without asterisks may take international donations through a paypal or venmo account. If you are a non-US-based bidder/donor and you are having trouble finding an organization to which you can donate, please email us directly at fandomtrumpshate @ gmail . com.

[beatingtheouijaboardallegations]

wish there are less people invested in one single narrative of nonspeaking / nonverbal identity.

feels like there many different “traditions” or something of nonverbal nonspeaking activists and each small community all says same thing, same origin story same definitions same words same talk points. and I understand this because we are all autistic! we are all echolalic we all echo language and ideas from the community we surround selves with. but find it really hard when echo words becomes ddogma becomes thing you can’t say differently and just assume everyone thinks same thing or else not really in group.

(going to try to use “nonspeaking” for first community and “nonverbal” for second community because that’s what each one of these communities usually prefer. language hard so sorry if don’t do this consistent.)

like if I go to one of I-ASC (international association on spell to communicate) conference or one of their neuro lyrical events online. as a nonspeaker since birth who does have experience of “learned language without having speech”, of people assume don’t understand anything until finally found way to express self that world understands, and people still doubt am really the one saying this. in some ways relate to these people much much more than people on here who mostly became nonspeaking later in life and have very different upbringing not raised as a person with a DD not grow up without speech. places like the I-ASC and the Spellers community and impAACt and local meet up group for nonspeakers feel like family to me, feel like my people who move and talk and live like me.

but. there things in these community that are very black and white. that just can’t relate to. don’t relate to mantra of “speech is motor, language cognitive” for example. or “it’s not about don’t understand or about I don’t want to, it’s about can’t make body do it.”. because my motor issues interact with language processing interact with cognitive stuff not able to neat separate. yes AAC is freedom but I still have to make a lot of compromises to express self with words. have to leave out a lot or (more often) add a lot unnecessary stuff because there things that brain stuck that just can’t say in a way people will understand.

think this is true for lots more nonspeaking people than organizations like these (which were started + run by speaking people and communication & regulation partners and SLPs) say is true. a lot of nonspeaking people in these communities encouraged by speaking people in movement to focus emphasize on “we don’t have intellectual disability we can communicate with words just as good as you can, the motor problems is all that there we don’t have any language problems .” because this is what parents and speaking autistics and well meaning allies/communication partners think is important. they think the way to value us and to say we feel and think and know and should have rights (which we should!) is to distance distance distance far far away from any associate with intellectual disabilities with language disabilities with cognitive disabilities with process differently.

so as long as can be acceptable enough nonspeaker to them they support. which does not feel like support. nonspeaking doesn’t mean non thinking but intellectual disability and language deficit and cognitive disability doesn’t mean non thinking too. and a lot of people in these communities do have more complicated relationships with language but are told by speaking people in these communities to not talk about that only talk about motor stuff or connect everything back to motor stuff. which doesn’t feel like support. feels like flatten make easier make more convenient.

and then when I go on tumblr and see the nonverbal people speaking out here. i started out not on social media mostly in offline AAC and speller advocacy and someone told me there was good community of autistics with good range of support needs on tumblr so I joined. and do find bigger range of autistic and nonverbal nonspeaking experiences able to talk about here. able to talk about mental illness & psychosis & dissociation (which even nonspeaking advocacy communities assume nonspeaking people don’t have these problems or not capable). able to talk about “challenging” behaviors that so so stigmatized. able to talk about language and cognitive stuff. able to talk about gender and queerness without be policed (a lot of professionals and communication support people in nonspeaking advocacy are weird conservative and don’t think can know our genders / sexualities even though always talk about presume competence. it weird.) just saw beautiful post about nonverbal trans experience with gender that I loved. really like that people with intellectual disability getting heard, that we challenge expectation to have “proper” writen language. speech therapy and even learning how to use AAC, learning how to use letterboard etc was always about correct every mistake, about fade prompting, about use grammar properly so other people think competent. and have been able to let go of that on here because the language norms are so so different.

but at the same time I feel like there lot more stuff that not useful. lot of focus on right words to say, a lot of calling out other blogs, a lot of trolls, lot of drama that really doesn’t exist in real life nonspeaking community. like frustrated when go in nonverbal or nonspeaking tag and most posts not about nonverbal people human rights or experience, but about words. specific about people saying go nonverbal, someone trying to say it’s good or someone trying to say it’s bad. every other post about someone ask for right word to say instead of “go nonverbal”, or list of other words to say. or people asking whether or not they’re nonverbal or semiverbal or lose speech. and even within nonverbal community on here lot more talk about words than about justice. or even about lived experience of be nonverbal. people forget that real world outside tumblr tags exist sometimes. that there people living without communication, people being deny communication, people in institutions, people without resources. and that there are ways to change that and to self advocate besides changing what word you call yourself.

not saying words not important. yes it is annoying and bad when people talk abouit going nonverbal and forget that we exist. yes am grateful to people who decide to change what word they call themself to not erase us. but frustrated with how there not really conversation, one opinion just take as The Nonverbal Opinion, just like how it is in offline nonspeaking / speller community.

not seem like these communities are interacting, are compare notes on experience are combine to synthesize into something better. into what community could be. community that leaves no one behind. community that doesn’t claim to speak for everyone, doesn’t claim account for all experiences but still says all nonspeakers exist and all deserve rights. doesn’t tell anyone “don’t talk about your experience with X because it doesn’t fit what we want to tell the world that nonspeaking people are like.” where everything able to be talked about without it ever make less true that all of us need respect and rights more than any one word / idea.

curious if anyone have ideas for how to make this community.

[clem-l-orange]

my long essay about why Babel is such an interesting ark and deserves to be explored more

(Prefacing this by saying I read the books in French, so if I make any mistakes I apologize, French is also my first language so I may make some mistakes)

SPOILERS FOR BOOKS 3 & 4 AHEAD!!!!

We are introduced to the Ark of Babel in book 3 of La Passe Miroir when Ophelia escapes Anima to find Thorn, and chooses to go to Babel after following some clues to his location.

Babel is a “cosmopolitan ark”, where many different cultures mix due to the high rate of immigration. However, there is a divide in between the “Sons of Pollux” (Babelians descended from Pollux, who have Babelian powers) and the “Godchildren of Helen” (I apologize for the poor translation please correct me), who are either powerless and native to Babel, or not native to Babel at all. From the first chapters in Babel, we can see that these two social groups are segregated with dress codes, and there is even a time when Ambrose, the son of Lazarus, a wealthy and influential Powerless man, gets insults hurled at him for his background. In book 4, “A Storm of Echoes”, recent immigrants as well as political opposers are rounded up and sent to their deaths/deported from the Ark, . There is also a clear segregation within the city of Babel between Powerless people and others, with a majoritarily Powerless neighborhood being referred to as “The Powerless Quarters” (I may have translated wrong). This neighborhood is considered the “slum” of Babel, and is clearly described as a poorly maintained, badly policed and dangerous place to live.

Another dystopian aspect of Babel that we learn in the first few chapters is the extreme censorship of words relating to violence, war, crime… etc. The “Index” suppresses the use of these words, going as far as punishing those who say the words, even in non-violent contexts. This goes as far as branding murders and clearly voluntary deaths as “accidents”. The suppression of the words in the Index leads to misinformation in journals, and even book burning in what is supposed to be the oldest library on the arch, the Memorial. There are many parallels to be drawn from instances in history where books were burnt to stop the spread of information, but I love how this book spins it to make this censorship “in advocacy for peace”. Books about war are cleansed from libraries, collections of ancient artifacts as well. The “Master Censurer” at the memorial even goes as far as burning any book that Professor Wolf, the Memorial’s resident expert on “Prehistoric Wars” goes near. Babel is a dystopia under a blanket of pacifism.

We later learn about the “Observatory of Deviations”, which concept resembles a mental asylum/psych ward/home for the troubled??? All we learn about this place from the third book is that it is very secretive and treats it’s patients like property, which is even more enforced in the fourth book, when we see firsthand what happens in the Observatory, and when we learn that certain patients get branded with tattoos against their will. Blaise, a friend Ophelia made on Babel, describes the place to her, and makes a point that if you go there, you are the property of the workers, you cannot leave, and no information about your progress is ever disclosed to you. They are more interested in your “deviation” than your “personal preferences”. After reading about Ophelia’s own experiences at the Observatory, it became clear that the place was meant to be an allegory for some abusive psychiatric asylum, that the “deviants” were meant to represent neurodivergent and physically disabled people. Later in book 4, it is revealed that Lazarus is the master of this operation. When I heard this, my brain did a double take and I circled back to the part where Lazarus was described as a “father figure” to Blaise. The fact that Lazarus used his patients and their trust for his own personal gain (in this case for “scientific discovery”) I feel really reflects into real life in other situations.

Unemployment and the replacement of people by AI is also addressed in books 3 and 4, as automatons take up most of the manual labor on Babel, leaving Powerless people no jobs to support them. When visiting the Powerless Quarters with Octavio in book 3, Ophelia runs in to the Fearless and Almost Blameless, who proceeds to shame Octavio and tell him that, by walking around in his Forerunners uniform, he is humiliating those around him who have no future. Since almost all of the jobs that do not require powers are taken by automatons or people with power and influence, it seems like the poorer Powerless people have no future. In book 4, when Lady Septima announces that those with no familial or contractual tie to Babel are to be deported to their old Arks, there is an uprising that leads to violence, where the Unemployed people of Babel demand Octavio hire them in the place of his automaton. This truly mirrors our world today, as many jobs are in danger of being taken by AI or automation.

There are also other issues on Babel that mirror real world issues, with topics such as homophobia being brought up as side plots. I could literally write a whole other essay about the parallels and differences between Ophelia and Thorn vs. Blaise and Wolf, but that’s for another day.

Feel free to correct me if I got a translation wrong or if you agree/disagree with one of my points.

also a side note: Native Babelians are clearly supposed to look South Asian, right? Because sometimes I see fanart where some of the Babelian characters are considerably pale and it kind of weirds me out but this may be a misconception.

[justabunchofquotesfromallover]

"Understanding autistic burnout"

Definition of autistic burnout

Autistic burnout is a syndrome conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.

Characteristics and impact 

The research participants describe the experience of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described it as affecting every part of their lives and lasting for long periods of time. Many first experienced autistic burnout during puberty, graduation from secondary education, or at other times of transition and changes in developmental expectations. 

Autistic burnout had many negative effects on their lives. Many highlighted difficulties with their health, especially their mental health. They talked about struggling with independent living, loss of self-belief, and being frightened that the loss of skills from the autistic burnout might be permanent. They also talked about a lack of empathy from neurotypical people, who had difficulty understanding or relating to the autistic person’s experiences. Some people related an increase in suicidal ideation and suicidal behaviour.

Reasons why autistic burnout might occur

People described a collection of life stressors.

Masking their autistic traits, for example by suppressing autistic behaviours, pretending to be non-autistic, or working very hard to act in a non-autistic way.

Difficult or unreachable expectations from family, school, work, or society in general.

Stress from living in a world not set up to accommodate autistic people, for example managing the stress of having to be in noisy environments.

Life-changes and transitions that are stressful for anyone, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close.

They also described barriers to getting support or relief from the stress.

Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.

Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.

Inability to take a break from stress that is so pervasive (“How do you take a break from life?”).

Insufficient external resources and supports, for example inadequate disability services, lack of useful social support.

Together, the life stressors contributed to a cumulative load of stress and the barriers to support meant they were unable to get relief from the stress. At some point, the expectations on the person far exceeded anything they were able to do. Every part of them gave up and autistic burnout resulted. Or, as one study participant summarised:

‘‘Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.’’

Reducing or Preventing Autistic Burnout

Participants told us about ways that they found to relieve or prevent their autistic burnout, and advice they have for others.

Acceptance and support – interacting with others who could accept them for who they were, without any need to masking or pretend. This could be one-on-one with family members or friends; on a community level of groups with accepting cultures; or on a peer level, especially finding other autistic people who could validate their experiences and offer information and emotional/social support from lived experience.

Being autistic – attending to autistic needs like stimming and spending time with intense interests and comfort items, unmasking, using autistic strengths or doing things in an autistic way.

Formal supports – receiving reasonable adjustments at school or work, physical support like someone to provide groceries, and mental health support.

Reduced load – taking time off, more breaks, reducing social activity or other types of more stressful activities.

Self-advocacy and health – learning how to set healthy boundaries and expectations from others, and what to do when others aren’t respecting boundaries. Learning how to ask for help in a way others might be responsive to, and leading as healthy a lifestyle as possible (for example participants described how exercising, sleeping, eating well, and doing things that made them happy helped them out of autistic burnout once they had enough energy to do them).

Self-knowledge – learning how to recognise and act on the early signs of autistic burnout (for example by cancelling social plans to have more rest), having an autism diagnosis, and understanding one’s own patterns of behaviour and feelings.

Recommendations and next steps

We recommend increasing awareness about autistic burnout, and connecting with the autistic community and peers that understand autistic burnout. The experiences of people who describe being in a state of autistic burnout should be validated, whether they use the term or not. We recommend that therapists and clinicians learn to recognise autistic burnout in clients and offer strategies for relief. 

In general, we recommend others be aware of the potential dangers of teaching autistic people to mask or suppress their autistic traits. Suicide prevention programs may want to consider the potential role of burnout. We strongly support interventions to decrease the discrimination and stigma associated with autism and disability in society, and to improve access to reasonable adjustments and acceptance.

Though an important start to the conversation, our findings are from a small qualitative study of a non-random sample. They are also limited to autism; we feel that this may be a broader experience of people who experience disability. Therefore we highly recommend more research in this new and urgent area, especially in collaboration with autistic people who can contribute the expertise of their lived experience.

--Dr. Dora Raymaker, Research Assistant Professor at Portland State University, based on research by Academic Autism Spectrum Partnership in Research and Education (AASPIRE) (via National Autistic Society)

[headpainmigraine]

If you have a chronic illness/disability, please research it.

GPs will diagnose you and then do nothing.

Doctors don't care about you if your condition is chronic.

Unless they're specialists, doctors don't even know anything about your condition half the time, and certainly not the latest research into treatment.

These people spend a total 4 hours on headache in 6 years of training.

You have to ARM YOURSELF with knowledge about your illness and the latest research on treatment and/or its mechanism and origin.

They will try and fob you off with 'take ibuprofen of its bad' and that's not good enough!

You're in constant pain!

They aren't going to look this stuff up for you.

Pubmed can show you research papers for all kinds of conditions.

Advocacy and support groups can help if the pubmed stuff proves too dense.

There are specialist lectures and presentations on YouTube that aren't only for other doctors.

There might be a slight learning curve, but it's worth it to understand what's happening in your body and what treatment options there are.

You can bring them up to your doctor and demand they actually do something.

Success might vary, but at least you'll know you've done everything you can.

No one else is going to advocate for you, and this is a situation where information really is power.

It also helps you avoid situations like:

*post about normal human behaviour with claims it's a symptom of X*

"Wow, I do that, I didn't know I had X!!"

Knowledge is power, and it's time we took it back.

[drdemonprince]

This essay began as a response to someone in a fat-positive group asking how to walk out of doctor appointments when encountering weight-based discrimination in healthcare settings. I have done this many times, usually in a panic attack induced by medical abuse and neglect, specifically about my weight; these situations have frequently taken weeks or sometimes months of recovery afterward. I’m a white, middle-class, infinifat, non-binary person with severe complex post-traumatic stress disorder; “severe” is my own description, based on the number of years I spent frequently suicidal and having multiple panic attacks a day, primarily in response to fat stigma from family, friends, and specifically in accessing medical care. I have tried out various self-advocacy techniques I have learned from others: Black women activists, disability activists, fat activists, and other fat friends and communities.

I share these self-advocacy ideas as an offering of community care and not as my own creation.

Referrals Lies Documentation Getting Out Afterwards

a fantastic toolkit by my friend @photopotamus

[not-so-superheroine]

any christians (including latter day saints of all kinds) here and queer on tumblr?

i'd love to chat religiously with you and also about your secular interests too.

was off tumblr for a bit, and now i am back! but with a more intense spirituality and more interests :)

so i think looking for mutuals is in order!

To introduce myself,

Hi my name is superheroine. I am a Black nonbinary lesbian (they/she). I attend Community of Christ, and I grew up in an African Methodist Episcopal church. I am 26 years old and do a lot of disability advocacy and and work around intersectionality in a disability rights context. i am really active at church, and partake in sunday school, morning prayers, church history and scripture education, choir, and scripture studies.

i think ecumenism is really important so i try to understand and worship with the other parts of the body of Christ. i especially do work within ecumenical latter day saint movement groups / wider 'mormonism'. i think we would benefit to learn from each other and grow together, should we all be sincere and be as patient with each other our loving God is with us.

please say hi 👋

and if you have mutuals you feel fit the bill, i'd appreciate a rb <3 ty

[nbenvs3000w24]

Hi everyone!

Wow… I can’t believe this is the last blog of the year! It’s quite a bittersweet feeling but I’m excited to wrap up everything I’ve learned and explored throughout the course in this final post and dive into my true personal ethics as a nature interpreter. Here we go!

What are my personal beliefs? 

One of my main personal beliefs as a nature interpreter is sharing empathy and inclusivity through the belief in fostering and creating inclusive spaces where people from all backgrounds and learning abilities feel welcome to connect with and learn from the natural world. As someone who has spent hours volunteering at Kids Ability and has always shared a deep passion for helping people with a disability whether that be physical, mental or emotional, I strongly believe that as a nature interpreter, it is our duty to make all people feel welcomed and included. As I learned in this course, “interpreting to people with disabilities involves getting people to participate and learn by building on their knowledge, interests, and skills, just as with any group of visitors!” and that is exactly the approach I would have as a nature interpreter (Beck, 2018). I also believe this relates to the privilege I have as a nature interpreter in recognizing the importance of integrating all audiences by providing opportunities for building social skills for those with and without disabilities while also recognizing the privilege we carry in relation to those around us. Some suggested examples of proper etiquette when working with people with disabilities are: don’t “talk down’ to a person with a disability, speak in a normal tone of voice, be patient and encouraging, do not lean on a wheelchair or any other assistive device, offer assistance only when permission is given, etc (Beck, 2018). 

Secondly, another important belief I carry as a nature interpreter is the belief in lifelong learning. One of my favourite things about nature is that there is always more to learn and discover and always more than what meets the eye. As a nature interpreter, I believe in fostering an environment of lifelong learning where individuals are encouraged to deepen their understanding and appreciation for the natural world through their own individual curiosity and interest. I believe that every individual experiences and interperets the world differently and there is no right way to see the things around us and that learning is continuous. 

What are my personal responsibilities? 

One of my main responsibilities as a nature interpreter is the responsibility to advocate for the conservation and protection of natural habitats and species, using my platform to raise awareness about environmental issues and what we as a society can do to help. As I learned throughout this course, “public advocacy can be risky, and not always possible everywhere, but for the right organizations there can be enormous opportunities to more deeply connect with their clientele and make a difference in the world,” and that would be my responsibility as a nature interpreter (Beck, 2018). Some of the ways I would promote advocacy is by raising awareness about environmental issues such as climate change or pollution, promoting local conservation efforts and encouraging sustainable practices such as recycling and waste reduction. By using my knowledge, communication skills and passion, I can inspire others to become environmental stewards and advocate for policies and practices that protect and preserve the world around us. 

Another key responsibility of mine is to ensure that as a nature interpreter, I always lead ethically and adhere to ethical standards in my interactions with both nature and people, ensuring that my actions are aligned with principles of respect, integrity and honesty. Some of the actions I can take to ensure this would be refraining from actions that cause harm or disruption to ecosystems and wildlife, only conveying information about the natural world that is accurate and honest, recognizing the importance of cultural sensitivity and respect for indigenous knowledge when interpreting nature and adhering to principles of informed consent before using photographs or data. Ethics are important as a nature interpreter as it’s essential for protecting the environment, species and resources, encourages us to think beyond our immediate needs and consider the impacts of our choices, teaches us to advocate for environmentally friendly practices and also builds trust between the interpreter and their audience (GFG, 2023).

How would I approach this?

One way I would approach being a nature interpreter in a way that is most suitable for me, is through use of experiential learning that involves a hands-on approach to learning that engages participants directly in the learning process. As someone who has always been more of a kinesthetic learner, I believe my teaching approach would be best suitable for things such as hand-on activities including touching or examining leaves or rocks, field investigations, nature-based crafts or projects and physical games like scavenger hunts or obstacle courses. By incorporating this hand-on approach to nature interpretation, I can effectively engage learners in a hands-on, experiential learning experience that fosters connection and curiosity towards the natural world. In doing so, it is also my duty as an interpreter to also recognize that although this is a suitable learning style for me, it might not be the most suitable for those around me. As an interpreter, I must not only be able to cater to every learner, but I need to be able to quickly adapt to suit my audiences needs (Hooykaas, 2024). Incorporating my own preferred learning style while also adapting to the needs of those around me, is what will create the best possible learning environment for my audience as a nature interpreter. 

Secondly, another approach I would take as a nature interpreter is teaching through storytelling. As someone who has always been more creative and curious about the natural world, the stories and cultural significance of nature is something that has always appealed to me. Storytelling is a powerful tool in nature interpretation and can, “powerfully convey information about cultural and natural history where stories have the potential to hold the attention of large, mixed-age audiences” (Beck, 2018). Some ways I can use storytelling through nature interpretation is by sharing stories that highlight traditional knowledge, historical events associated with a particular place and Indigenous perspectives. Additionally, by engaging the audience through use of imagination, inviting the audience to envision themselves as part of the narrative through use of vivid imagery or sensory details. Overall, I believe storytelling is one of the best ways to interpret the beauty of the world around us and create an experience for the audience that is unique and inspiring. 

Ultimately, as nature interpreters, we play a vital role in bridging the gap between humans and the natural world, encouraging curiosity, appreciation and action. Although each one of us may have different outlooks on important beliefs, responsibilities or approaches, we all play the same important role in the end. I hope you enjoyed listening to mine!

To end this post, I would love to know what your personal most important belief, responsibility, and approach is when it comes to nature interpretation? Do you think one is more important than the other?

Thanks for listening!

Natalie

Works Cited

Beck, L., Cable, T.T., & Knudson, D.M. (2018). Interpreting cultural and natural heritage: for a better world. Sagamore Publishing.

Hooykaas, A. (2024). Unit 02: Teaching Learners. ENVS3000 Nature Interpretation. University of Guelph.

GfG. (2023, September 10). Environmental ethics - types, importance, examples. GeeksforGeeks. https://www.geeksforgeeks.org/environmental-ethics/ 

[five-thousand-loaves-of-bread]

on one hand i know why like in online autistic space, people are really against assuming support needs online. because sure what put online is only a fraction of experience. some only want post positive things. and other people mask difficulties so appear better off than actually are, etc. know all that!

but issue comes when… there is consistent pattern of a specific type of lower support needs (LSN) autistic generalizing their LSN experience, pathologize every little experience as autism, spread misinfo, use aspie supremacist rhetoric,

erase higher support needs (HrSN) autistic experience, speaking over us, perpetuate extremely harmful ableism against us, do not reflect own privilege, pose self as most oppressed,

and misusing support needs label

and it’s important to note that it’s mostly being done by (a specific group of) lower support needs autistic. because they have more communication abilities, more self advocacy abilities or more able to learn self advocate, more independence, more closer to the mythical “neurotypicality” ideal, more able to mask, etc etc… loudest, most majority, most listened to.

“how dare you assume my support needs when you don’t know me” has been conveniently used as a shield to free them of responsibility. “if conveniently don’t mention that have lower support needs, or have level 1 autism, then they can’t criticize me of perpetuating aspie supremacy can’t criticize me of not reflecting on my LSN advantage, and i can become the victim and escape accountability.”

and. another layer of issue is. some of them genuinely think they high support needs or have substantial support needs because they need support and don’t have needs met. when they’re… not.

i have been putting off addressing this topic because i don’t want a slippery slope to fake claiming, or give off “i know you more than you” because i don’t.

but. i know the autism spectrum more than them. i know the support needs spectrum and autism levels more than you. and maybe even most important, i know what i don’t know about these topics more than you.

yes, HrSN autistics can achieve great things, as much or maybe even more than LSN and nonautistic nondisabled people.

yes, some HrSN autistics can speak relatively fluidly. some HrSN autistics may be able to mask. some HrSN autistic may be not as visible HrSN/autistic every single second of day—less likely, but who am i to generalize?

BUT. and i have addressed this over and over and over again in my posts. being HrSN is not just about needing help with “eating” (and by eating they mean cooking and not actually feeding), reminder to shower, budgeting, getting groceries, some of the time. being level 2/3 is not just about other people think you “weird” sometimes, or meltdown once in a while (like weeks apart).

overwhelmingly more HrSN autistics struggle with masking or unable to mask at all, with most or all communication, living independently is often not even an option to consider for us, can’t hold job (mayybe unless very specific employment support), visibly autistic, visibly disabled.—as in, you can tell. strangers can tell.

for many of us, there is no reasonable deniability, there’s no benefit of the doubt, there’s no hiding.

for many of us, we are concerned and focusing on basic living skills.

and i’m trying to be generous here. i’m trying to give these people & behavior i’m critiquing the benefit of the doubt. there are harsher things i want to say that im holding off right now.

not saying there’s nothing wrong with assuming support needs. not saying we should all start random assign internet people support needs labels.

but there is nuance. some people don’t like that nuance tho because it not in their favor and they can’t play victim anymore

[autisticadvocacy]

Applying to the 2024 Autism Campus Inclusion (ACI) Leadership Academy? Applications are due in TWO WEEKS! Don’t miss your chance to learn about making student groups, understanding disability policy, and talking to people in power.

[genderkoolaid]

Article from 8/9/12

Jay Kallio, a former EMT who is disabled with kidney failure, rheumatoid arthritis and now cancer, has struggled to get good medical care, but being transgender stood in the way. At the age of 50, Kallio transitioned from female to male, but never had gender reassignment surgery, only hormone treatment. "I accept my body as I was born," he said. But when a suspicious lump was found in his breast and tested positive for cancer, the surgeon was so shocked that Kallio's body didn't match his gender identification -- not knowing whether to address him as "he" or "she" -- that he couldn't bring himself to tell his patient the grim biopsy results. Now the U.S. Department of Health and Human Services has said that under the Affordable Care Act, it is against the law to discriminate against transgender and LGBT patients in federally funded healthcare programs. The policy follows a landmark 2010 U.S. Equal Employment Opportunity Commission ruling on sex discrimination in the workplace. LGBT and transgender advocacy groups pursued a clarification from HHS for harassment and gender stereotyping in healthcare settings. Kallio, who is now 56 and lives in New York City, learned "accidentally" that he had breast cancer when the lab technician called to ask how he was doing with his diagnosis. "Which diagnosis?" Kallio asked, horrified. And it happened a second time, when the medical oncologist was "hostile" and refused to advise him on treatments. Later, Kallio, said the doctor apologized: "I don't think it interfered with the quality of your care." In fact, it did. Having to find new doctors delayed the start of chemotherapy beyond the so-called "therapeutic window" for his particularly aggressive form of breast cancer. "Our community needs medical providers to know what their obligations are and passing a law is the strongest and clearest way to do that," said Mara Keisling, director of the National Center for Transgender Equality.

[uispeccoll]

#VoicesFromTheStacks

image taken from Iowa Now.

Bill Sackter was born in St. Paul, Minnesota in 1913, born to Russian Jewish immigrant parents. His father passed when he was 7 due to the Spanish flu, and the same year Sackter struggled in school. After taking a mandatory intelligence test, the state sentenced a verdict that placed him in the Faribault State School for the Feeble-Minded and Epileptic. He stayed there for 44 years.

In 1964, when new treatments were being introduced for people with disabilities, Sackter was moved to a halfway house where he worked to support himself, and made friends with filmmaker Barry Morrow and his wife. As their friendship evolved, Marrow became Sackter's guardian, and when Marrow got a job at the University of Iowa, Sackter followed him to Iowa City where he became the proprietor of Wild Bill's Coffee shop.

image taken from The Iowa Source

Wild Bill's Coffee Shop -- The late Tom Walz, a former director and professor in the UI School of Social work, created Wild Bill's Coffee Shop in 1975 to provide work for Sackter. Walz put him in charge of running the small coffee service located in North Hall. The coffee shop employed individuals with disabilities and served as both a job site for them and a learning lab for social work students.

In 2021, 46 years of service, the shop determined that because other coffee shops and kiosks in the area were hiring individuals with disabilities, that they would close down the coffee shop and instead make the now renamed "Wild Bill's" into a "community space, makers' space, and classroom" and that the space will still "collaborate with the disabilities community to include people with disabilities in the school’s social justice advocacy, and carry on the legacy of innovative social work faculty who came before."

Apart from the coffee shop, Bill Sackter was busy working with media groups that were interested in his life. Walz created a written biography about him, while Marrow co-wrote a movie about his life titled Bill (1981). That movie did so well it earned a sequel: Bill on His Own (1983). From the movie Bill, here at UIowa we have the Emmy and the Emmy Award video that the movie won. We also have the documentary that was made about Sackter's life titled "A Friend Indeed – The Bill Sackter Story."

Dennis Quaid (actor), Sactker, and Morrow accepting Golden Globe from the Iowa Digital Library.

More about Bill Sackter and the history of Wild Bill's Coffee Shop can be found here and here on our Iowa Digital Library!

Morrow & Sacktner, image taken from Kickstarter.

We also have other collections relating to disability and disability activism, which can be found by searching here.

Did you know..

that according to the CDC, 1 in 4 adults in the US have some type of disability, 1 in 4 adults (45-64) have not had a routine check-up in the past year, 1 in 3 (18-44) adults with disabilities have an unmet healthcare need because of costs, don't have a usual health care provider, and that many individuals with disabilities are unable to get married without losing their benefits? Learn more from activists Alice Wong, Haben Girma, and the late Evelyne Jobe Villines.

At the University of Iowa, we also have services at the student level [UI Students for Disability Advocacy & Awareness (UISDAA)] and institutional level [Student Disability Services (SDS)].

Gif taken from Giphy.

Happy Disability Pride Month!

-Matrice Y., Special Collections, Olson Graduate Assistant.