Whatever it is you followed me for... you are getting a lot of random other stuff too. Things I like: monsters -Pacific Rim--Good Omens-- animals (especially hyenas)-stupid horror movies where people are eaten--- personal stuff is mostly about small town politics and organizing Pride events. Logistics and infrastructure, it's hella gay!She/They -Old enough to remember when the internet made a noise.
no sorry i dont really use instagram, i can contact you via ouija board, spirit box, fluctuations in temperature, flickering lights, and certain rituals. i am also on tumblr.
Hey Idk if you have advice for this but I was hoping sending it here could get some more eyes on it! I'm fat and disabled and I'm trying to get a wheelchair but I'm really struggling to find ones that will fit and support my fat body, do you know any manufacturers that make better chairs for fat pple?
I do not promote weight loss mentalities because I believe that if weight loss is going to occur in a healthy way, it's going to occur as a side effect of adopting appropriate fitness habits
Not as the goal, because adopting fitness habits does not always result in weight loss.
And it's the habits, like building muscle, improving flexibility & mobility, increasing nutrient intake & hydration, and getting quality rest & sleep that actually matter.
If you're successfully doing those things your health is quantitatively improving, no matter what your weight is doing. But if the metric your most concerned with is just loosing weight, you may actually be getting less healthy not more.
Because weight loss can occur for many reasons, and most of them are not healthy.
To be clear, THIS is how nights of the future should be lit
This is bat friendly street lighting, which not only looks sick as fuck but allows bats to pass through without disturbance, as they cannot see red.
orange and especially white lights deter bats and prevent them from reaching feeding grounds at nighttime. Please if you can, write to your local council and encourage red street lights!!!!
I was on a panel this weekend about logistics for Pride celebrations and was specifically doing the part about accessibility. This is the checklist I use for a site visit beforehand.
This is used to prep two things
a FAQ about the site
a list of things To Do before the event
The FAQ means that anybody on team has access to detailed information about site right away. We usually put the most common information right in the event announcement descriptions, but the less common ones might be a linked page or an "ask for details" if it's a complicated answer or involves something we had to address Day Of.
The To Do list is broken into two things, one, annoy the venue owner to fix and two, day of fixes. For example, the venue we use had a wheelchair ramp that went up to a heavy, manual pull door. Whomp whomp. So close to accessible! So every time I saw people involved in renovations for building, I annoyed them about the "how's that coming, that's gonna have a power assist, right?" and it FINALLY HAPPENED. But meantime, day of, we stationed a volunteer there that opened the door and answered wayfinding questions for people like "how do I get from here to the bathroom?" (there were signs we added as well, but that was the backup)
Sometimes if the site visit reveals too many problems, you should just pick a different venue!
This was set up as a two page, printable list for the event, but here's a GDOC where you can download a copy for yourself and add more things! Or just use it to make a FAQ about sites you're using. I can guarantee I missed some things that might be relevant for your particular disability because I don't know everything to look for. But it covers a lot of the most common things you need to know for a location! the GDOC allows comments if you want to suggest stuff I should look for.
Wheelchair checklist
If it passes on all counts for a wheelchair, it should also be fine for strollers, walkers, rollators, cane users, or crutch users.Â
Is there a ramp? If so, where is it? How do you get from this door to other points in the building? Is there signage showing how to do so?
Doors are power assist yes/no. If not, which direction do they open? Is there enough space for a wheelchair user to open the door and still have the chair on a stable surface? You need a 3’ X 3’ space to be able to turn a wheelchair.
Are all bathrooms accessible or only some? Make sure the sink and hand dryer are also reachable. Is there signage pointing to accessible restrooms?
Are thresholds raised more than a half inch yes/no (no is good)
Are tables or counters at a height accessible to wheelchair users?
How wide are the doorways? Note anything less than 32”. You may need an alternate route to get between spaces if they are smaller. Make sure to measure with the door open, to account for any problems fully opening the door.
Is there an elevator & is there signage pointing to it?
If a stage is in use, is it accessible?
Check outdoor surfaces are level and intact. Note surfaces other than asphalt/concrete. Cobble tends to be very difficult to travel over. If possible, observe when snow has fallen to see which surfaces are regularly cleared or not
Where is the curb cut and does it flood during heavy rain? Is it plowed?
For any temporary structures, find a weight limit. A power chair may weigh 1000 pounds with the user in it!
BATHROOMS
Is a gender neutral or family restroom available? Does directional signage point to it when you enter an area?
Can the door be operated one handed or by someone in a wheelchair?
How high is the sink? Can it be used by a wheelchair user or child?
Where is the changing table and is it clearly labeled where it is?
Is there any seating in the bathroom?
Are menstrual products available?
Is there an emergency pull cord in the bathroom? Make sure the cord is NOT tied to the grab bar and reaches the floor!
TRANSPORTATION
How close is this to a public transit stop? Does the transit run during the event?Â
What is the condition of the sidewalk between the transit stop and venue? Check curb cuts and condition of surfaces. Check for obstacles that may make the sidewalk too narrow for a wheelchair.Â
Is there signage by the transit stop pointing to your venue?
Is their signage at your venue pointing to the transit stop?
Do curb cuts at the venue have a different textured plate on them?
Where is handicapped parking compared to the entrance you are using? Is there signage by the parking indicating where the entrance is if it is not visible?
If there are multiple entrances to parking, is the one that leads to handicapped parking clearly labeled?
Is there a bike rack?
OTHER CONCERNS
Are there flashing lights some or all of the time?
Are there fluorescent lights? Can they be swapped for a different bulb type?
Is there background noise that makes hearing conversation difficult?
What type of flooring is in this venue? Hard or soft surface?
Are there sudden, intermittent loud noises?
Is food present here? Does the food contain any common allergens?
Are there any strong non-food scents associated with the venue?
Are non-service animals allowed or present?
Is alcohol served?
Are drugs of any type present?
Is there seating for anyone over 250lbs?
Is there secluded seating away from noise or general line of sight?
Is there a sharps container anywhere on site? Is there signage pointing to it?
Is there an AED on site? Where is it? Is there signage pointing to it?
Is there a first aid kit on site? Where is it? Is there signage pointing to it?
More about what some of these items MEAN, why they're here, and some of the solutions for common issues.
You may not from the wording here (where I had limited space) that there's no explanation of WHY this is here, or what you're supposed to do about it. Also some of this is not necessarily aimed at people with obvious disabilities, just people that may have trouble interacting with the environment for some reason.
Signage questions- a resource you can't find is USELESS. this is why there's so much emphasis on signage. Signage doesn't help folks that can't read the sign due to language barriers or sight troubles. You still may need humans stationed at confusing spots to answer questions for these folks.
Signs should be as CLEAR AS POSSIBLE. A black and white sign with foot tall letters that says PARKING and an arrow is way more effective than themed signage you can't read. Signs are to convey info. If theming interferes with conveying info, function wins.
Even a place that's overall good still may need additional day-of signage if you will have some areas blocked off or people enter from a direction other than the building designer planned for. Or if you have significant number of folks attending that speak a language other than that used on the venue's signage.
Bathrooms- a lot if covered under wheelchairs, but there's specific concerns here for other users. We solve the menstrual products problem by put a bag on the counter in every restroom with menstrual supplies AND basic first aid items.
You may be able to ignore the things related to children at age restricted events.
TRANSIT- if you can't get there to start with, it doesn't matter if the inside is accessible. if you're US based, a car might be a necessity, but if you have a choice between a venue by public transit vs one away from it,pick the one with transit. You just potentially opened up attendance to a lot of people that don't drive for some reason (disability, minors, economic). and advertise its by the transit!
OTHER CONCERNS- most of these are related to sensory processing issues. some of these you can solve day of with some noise reduction stuff or just offering earplugs on site. Some you just need to let people know "this is a thing" so they can make their own preparations ahead of time.
Sometimes just knowing there is an issue may mean someone doesn't attend... but it's better to know than come and leave due to a bad surprise. Focus on who your core group attending this event is and make sure they can use it.
sometimes you simply can't make it accessible to everyone due to conflicting access needs. The group that couldn't get full access this time gets to be the priority a different time. This is extremely frustrating for both organizers and attendees when there's a conflict, but sometimes all you can do is go "we see the conflict, we can't resolve it without prioritizing, so we are focusing on core group attending. We'll focus on your group at a different event where we can solve this issue."
Weight limit for seating. this is sometimes really hard to figure out, you may need to ask the venue owner about it. They may also never have considered it! this might become a permanent fix at site. It might be you bring in heavy duty temporary seating. if you rent seating, ask the rental place too!
sharps containers you may be able to obtain for free from your local health department. Ask! The last thing you want is someone coming into contact with a needle in the trash. It's better to have it and not need it, than have a problem.
i think we should be talking about the semi-recent advancements in cystic fibrosis treatment like all the time every day. there hasn’t been a drug like this since AZT medications for HIV infection it is truly fucking miraculous and very important
basically: cystic fibrosis is a genetic disease which makes the mucous a person generates extra sticky. it used to kill people in infancy, then with advancements in medical tech it killed people in young childhood, and until very recently cystic fibrosis patients could expect to live until about thirty years old with consistent painful lung infections and complications.
in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.
people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.
like isn’t that insane. isn’t that amazing. doesn’t that give you hope for the future of medical advancements and treatment. fuck. i think about it all the time……
For the people asking "well how do we know people are living that long if it's so new????" Here's a page from the CF foundation about life expectancy.
Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.
But the fact remains that the odds are better now than they have ever ever been before, by leaps and bounds. It isn't cured, and many patients still need significant treatment in addition to Trikafta, but it is so much better than anyone could have dreamed of twenty years ago, and that is a triumph.
Yes! My sister has a serious form of cf and finally is living a more comfortable and active life. She was also part of many of the clinical trials leading to these breakthroughs due to the nature of her cf. It's been very exciting to see.
SO YEAH HI LMAO I'm a CF patient who's presently taking Trikafta, and I have been since 2022. Before that, I was taking Kalydeco (ivacaftor), which is a component in Trikafta.
These medicines are incredible. My lung function's now basically at healthy-person-without-CF levels, and so's my sweat chloride. I still take pancreatic enzyme supplements, and I still do my respiratory treatments for maintenance reasons, but my overall health is still SO MUCH BETTER NOW. My weight is stable, I don't get anywhere near as many sinus infections, my migraines don't last as long.
Another incredibly cool thing is that they're seeing recovery from lung damage in kids who are on Trikafta and other CFTR modulators - and slight recovery in adults too. My own chest X-rays show that my bronchiectasis has gotten just a little better.
I was born in 1981, and it's wild to see how much the treatments and prognoses for CF patients have improved. Adult CF clinics are a thing now. More and more of us are living longer.
I'll always wish that more of my friends had made it this far, and gotten access to these medications. But I'm so grateful that I have this access, and I'll keep on keeping on in their memory.
Okay so summer is the time to tell ghost stories in Japan which is why so many summer episodes of anime have ghosts in them and even why My Neighbor Totoro and Spirited Away takes place during summer. And coincidentally it’s also the original spooky season in my own country, Denmark, where we have Sankt Hans in June which is said to be the best time of year to do magic and communicate with the dead.
We all know Halloween by now which takes place during autumn and is said to when the veil between life and death is the thinnest.
In Britain winter, especially Christmas time, is considered spooky and a time for ghost stories which is why British shows always have a spooky Christmas episode and why A Christmas Carol has ghosts in it.
What I’m getting at is, is spring considered a spooky time of year anywhere in the world? You must understand, I need every season to be their own flavor of spooky.
also you can't tell me black Vulcans wouldn't sport this type of haircut. the geometric shapes, the clean lines, the symmetry? absolutely Vulcan to the core. straight haired Vulcans wish they could look this flawless. scientifically this is the Most Vulcan Haircut
One time I came home from uni very upset and my younger siblings asked what's wrong. I said that mutated flies in our lab escaped because someone broke their jar. I didn't even realise how scary it sounded to them until I saw their faces lmao. I was upset because we were short on said flies (they don't reproduce very well) and my siblings thought that some crazy radioactive fly monsters escaped and we are all fucked now. Love being a mad scientist in their eyes lowkey
Have you ever seen the red river hog (Potamochoerus porcus)? This species inhabits forests, savannas, and swamps in parts of western and central Africa and Madagascar. It’s a social animal that can be found in groups of more than 20 individuals. Using its sharp sense of smell, this omnivore tracks down snacks like fruits, seeds, grasses, and nuts. It isn’t a picky eater, and may even eat carrion… or elephant dung, if there are undigested seeds in it!
So today I tripped. Fell flat on my face, it was awful but ultimately harmless. My service dog, however, is trained to go get an adult if I have a seizure, and he assumed this was a seizure (were training him to do more to care for me, but we didn’t learn I had epilepsy until a year after we got him)
I went after him after I had dusten off my jeans and my ego, and I found him trying to get the attention of a very annoyed woman. She was swatting him away and telling him to go away. So I feel like I need to make this heads up
If a service dog without a person approaches you, it means the person is down and in need of help
Don’t get scared, don’t get annoyed, follow the dog! If it had been an emergency situation, I could have vomited and choked, I could have hit my head, I could have had so many things happen to me. We’re going to update his training so if the first person doesn’t cooperate, he moves on, but seriously guys. If what’s-his-face could understand that lassie wanted him to go to the well, you can figure out that a dog in a vest proclaiming it a service dog wants you to follow him
If the sight of a death’s-head hawk moth (Acherontia atropos) makes you want to scream, don’t sweat it… the feeling is probably mutual. When alarmed, this insect can expel air through its proboscis, creating an internal vibration that produces a squeaking sound. Though this moth is best known for the skull-like pattern on its back, it’s harmless, enjoying a diet of nectar and honey.Â
Endlessly funny to me that in Economics/Finance/Fundraising we have a term, The Great Wealth Transfer, which is an accurate but wild way to say The Accelerating Boomer Die Off.
The webinar I was in when I posted this, which was about bequest giving, reminded me that August is National Make Your Will Month which does make me worried about what's going to happen in September.
Typical Disney-style story of a kingdom with an anxious new ruler whose inherited chief advisor has a goatee, dresses in black and red, smirks a lot and keeps a snake as a pet.
Every single villanous plot to overthrow the kind and ”weak” ruler fail because the advisor is 110% loyal but his vibes make all the baddies assume he’ll help out in the insidious coup plan so they recruit him, and he absolutely delights in puppeteering wannabe autocrats into digging their own graves. He doesn’t want to rule, he’s having way too much fun being a villain honey trap.
Add-on to this idea: the ruler and the advisor have some elaborate code speak based on like gardening or knitting or something (because chess would be too obvious) to secretly keep each other up to date on ongoing plots. When the advisor slips up at one point, and is kidnapped and replaced with an impostor, this is what alarms the ruler to that the rescue ninja need to be sent out.
”Yeah the shadow clobe was perfect except he had no idea how to prune grapes properly.”
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