74
submitted 10 months ago* (last edited 10 months ago) by bijuice@beehaw.org to c/chat@beehaw.org

I saw this discussion brought up on a different thread and I though I'd get some more opinions on the matter.

The Beehaw community guidelines describe a place that's meant to be safe, friendly and encourages people to discuss their ideas in good faith. For the most part I feel like this community lives up to that; users of this instance are generally thoughtful with their responses. However, I don't feel like that level of quality extends to the users who post from other instances. Responses from those users are more likely to pendantic, overly argumentative, and unhelpful.

Now I may just be an elitist fuck so I'd like to hear your opinions on this. Does Beehaw benefit from federation? Do the community guidelines even matter if they don't apply to many of the people who engage with this instance? Am I just looking for a reason to complain?

EDIT: This post isn't a request for Beehaw to defederate btw. I just wanted to discuss the negatives of federation and what we can do to alleviate them :)

you are viewing a single comment's thread
view the rest of the comments
[-] YourHeroes4Ghosts@beehaw.org 6 points 10 months ago

Please understand that writing about my experience of autism in a Beehaw comment will necessarily give an extremely simplified and limited view of what my life is like. I've had similar discussions in the past where the other person either decided I was seeking advice or found a way to twist my experience to fit their beliefs, and I'm honestly not here for either- if I stop responding after this comment, that would probably be why. I also can only give a few examples without also writing a book.

I am hypersensitive to all kinds of things that non-disabled people can easily ignore. I cannot go anywhere where there might be harsh florescent lighting, sudden noises, flashing lights, loud music, or strong, invasive smells like perfume, because these things cause me literal pain. This means I can't go shopping in a mall or pretty much anywhere else. I can't go to any large gathering of people. In fact, I can rarely go outside at all, because you never know when you're going to be confronted with someone who thinks the whole neighbourhood wants to hear their music. I suffer from severe emotional dysregulation that makes my life a living hell- I am 51 and I have regular meltdowns and attacks of rage. My behaviour is not "normal" for a woman of my age, and it causes me great distress and prevents me from living the life I want to live.

That is not to say that I would want to cure my autism. The fact is, I am attempting to get treatment for my sensory processing disorder but am fighting ableist anti-autistic attitudes from local health care professionals. I believe there needs to be some sort of place in the NT world for those of us who are totally overwhelmed by the NT world but also would like to not always be left out of everything.

[-] jarfil@beehaw.org 1 points 10 months ago

Hm, that indeed sounds harsh, and disabling. If you say it comes as part of the autism diagnosis... then I'll have to read up and reflect on it.

Thank you for sharing.

The attitudes from some health care professionals, I've got some of those; I think some try to be funny, but their humor is... pretty twisted, and sometimes too out of place. That is, when they aren't just undertrained, or burned out. If possible, try to find someone who understands your case, and stick to them, and hope their contract gets renewed.

Places like malls, or anywhere with ads (that includes images, lights, sounds, smells), I'm afraid are always going to be tuned to NT levels, so only something like relax places come to mind as safe spaces. At least, until everyone ends up wearing VR helmets 24/7, with their own personalized experiences (then you'll get to experience your own low-key personalized ads too, yay!...)

[-] YourHeroes4Ghosts@beehaw.org 2 points 10 months ago

Unfortunately, when local professionals told me that autism is a disorder of childhood in which they are not trained, and therefore they will not see me, they are being very serious, not joking even in a dark and twisted way. My country has a kind of national health service and I happen to live in an area where there are no services of any kind for autistic adults. Once I am told "no, you can't have an appointment, I don't see autistic adults", there is nowhere else to go.

this post was submitted on 10 Aug 2023
74 points (100.0% liked)

Chat

7455 readers
10 users here now

Relaxed section for discussion and debate that doesn't fit anywhere else. Whether it's advice, how your week is going, a link that's at the back of your mind, or something like that, it can likely go here.


Subcommunities on Beehaw:


This community's icon was made by Aaron Schneider, under the CC-BY-NC-SA 4.0 license.

founded 1 year ago
MODERATORS