honey locust

“if you can know where you’re going, you’ve gone.” - stephen sondheim if you get off on my disability, absolutely dni.

[gleditsia-triacanthos]

life has gone so crazy lately, forgot my sense of humor, so here’s information and advice for my u.s. citizens:

an executive order is not a law. you will see lists circulating of a thousand executive orders trump has made in the past week, but be aware that the constitutionality of those orders are (knowing him) limited, and people and groups are already fighting them through the courts.

immigrants, here both legally and not, are at the most imminent risk. ice raids have begun. regardless of immigration status, i highly recommend checking out immigrantjustice.org and propagating it as a resource. know your rights and the rights of your community members.

things to do:

- chose one issue you care deeply about and organize around it. i’m usually a believer in intersectionality, and it’s important not to overlook how social issues are connected, but trying to mitigate all of the abuses happening in the country right now as an individual is not possible.

- don’t tune out, but control your stream of information. limit your time online, especially if your feed is highly political. vet your news sources. you should not expect to feel normal when reading about the current administration, but avoiding all-out panic and despair is important. believing things are hopeless is self-fulfilling.

- easier said than done, but try to avoid in-fighting. trump-supporting american conservatives (more appropriately, regressives) present a far more united front than those who oppose them. this isn’t to say we should abandon controversial issues, but to focus our efforts on the greatest existing threat and not each other.

peace, love + all of the above. stay safe!

[gleditsia-triacanthos]

Do you have resources for vEDS? I just got diagnosed - everything I’m finding is either extremely general, complete misinformation or obviously geared towards the hypermobile type.

Unfortunately, to find community and the information I needed, I had to steer away from most organizations geared toward EDS generally. I (and probably people with VEDS) have more in common with people with Marfan and LDS.

*Highly* recommend starting with the Marfan Foundation. They’re partnered with the VEDS movement and focus on the hereditary connective tissue disorders that are life-limiting/affect vasculature. If you’re near a major city where they hold in-person events, I recommend those, too. Smallish group, but the info is good and I truly feel less alone.

[gleditsia-triacanthos]

I’m in a support group for wheelchair users (especially helpful resource over the past year, as I’ve had to adjust to full-time use after an SCI), and there was a recent debacle over one member with an SCI sharing weight management materials for people with paraplegia (who was accused, mostly by part-time users, of being fatphobic).

Weight management for full-time manual wheelchair users is not vain. It is not out of a hatred for fat people. Our ability to pull our bodyweight + 10-20 pounds of wheelchair is our independence and survival. Human shoulders are not built for that kind of strain as/is, so it’s important to make the job as easy as possible.

Please do not assume your ‘healthy’ is what will work for everyone, even if you are disabled.

[gleditsia-triacanthos]

I’ll have been paralyzed for a year next month, and as a little anniversary gift, I’m ordering a paradox chair from notawheelchair.com. I want to make sure EVERYONE who needs a manual chair and has one that may not suit their needs super well is aware of this as a resource!

Their base price is $999 for a custom manual (iykyk this is SO cheap for a custom). They’re limited to manuals and aluminum frames (no titanium/power), but their website has a super friendly interface and you can fully fit it to your measurements. Great option if you need a custom under 2k, and they can maintain their low prices by reminding you all over their site that you are *not* purchasing a medical device.

I’m realizing this sounds like an ad read, I promise it’s not! My OT added two inches in width to my first custom manual expecting me to gain weight, and though it’s not totally life-wrecking, it doesn’t feel great on my shoulders! My biker dad and I have developed a nerdy fixation on how perfect we can make my chair (I know I’m incredibly lucky to have 1500 to drop on something not strictly essential), so we’re ordering to my true measurements. It’ll be a new project.

Peace, love, + all of the above!

[gleditsia-triacanthos]

This may be more TikTok/reels discourse, but saying you’d rather have a terminal illness than a non-life-limiting chronic one is ridiculous. I am seeing wayyy too much “terminal illness may be a death sentence, but chronic illness is a life sentence,” and I want to break down why it’s so wrong. So many people are missing the point.

1. The flippancy used in talking about people losing their lives is disgusting. I have a diagnosis that puts my life expectancy in my ~40s-50s (there are a lot of reasons why I’m not comfortable labeling myself as terminal), and even that is existential and terrifying. I have to plan my life in a way different from everyone around me. I am going to miss milestones and leave behind people I love. Imagine someone with a much more limited life expectancy hearing someone call their illness “a death sentence but.”

2. Terminally ill people are usually chronically ill until they die. Yeah, there’s no sugarcoating it. Terminal illness is most often both a life sentence AND a death sentence, and this idea that terminal and chronic illness are mutually exclusive is stupid— they almost always coexist. The duration of the suffering may be different, but acting like terminally ill people have superior QoL is willfully ignorant.

- The Cancer Rabbit Hole -

Too many people on TikTok specifically are comfortable saying they’d rather have cancer than their chronic illness because “you either die or get better.” This is also ridiculous.

Cancer survivors often end up chronically ill or disabled.

It turns out that a disease treated with literal poison has long term health consequences. Chemo can cause chronic fatigue, brain fog, heart problems, and more cancer. Cancer treatment can also result in anything from limb loss to brain damage to GVHD. It is rare that cancer survivors recover to their pre-cancer function.

People accurately point out that this sentiment is an expression of a desire for treatment for underresearched illnesses. I think those people are right, and I still think that claiming cancer is easier to cope with is a horrible thing to do.

If you want treatment, say that.

There is no way to excuse saying you’d rather have cancer. I mean none.

- Allison Tennyson and the Pyramid Discourse -

I truly feel chronically online talking about this, but I think that this reflects a more widely expressed viewpoint within the chronic illness and disability communities.

For the uninitiated, an influencer named Allison Tennyson made a video criticizing a diagram that compared levels of disability, essentially saying all suffering is the same and that severely disabled people aren’t “like, more special or whatever.”

Someone is suffering more than you.

AND you deserve care and support.

It is still not helpful to pretend all disability or illness is the same.

I understand the desire to homogenize disability is another thing that comes from the fact that the suffering of others is used to invalidate chronically ill people with mild to moderate levels of impairment. I still think it’s very harmful to people with severe levels of impairment. It is not about being special or not, it’s about high accessibility needs being recognized and met.

Peace, love + all of the above.

[crippled-peeper]

I think some people greatly overestimate how many protections and how much visibility and social capital “the visibly disableds” have and it leads to these really bizarre takes and situations where they think they’re dunking on a group of people that have privilege over them and are suppressing them but in reality they are just … being ableist.

[gleditsia-triacanthos]

Epigenetics are real, and EDS is not caused by:

- Mold

- Underexercising

- Stress

- Diet

You can totally improve your symptoms by addressing some of these, but none of these things hold the cause or cure for EDS. People took the concept of epigenetics and ran with it.

[gleditsia-triacanthos]

I am convinced those “signs you have EDS!” TikToks that list stuff like not liking to wait in lines, being clumsy, or ears ringing have set us back twenty years.

[gleditsia-triacanthos]

A little fed up with the hEDSification of everything. I told a new surgeon at a consultation that I had cEDS and asked how she thought it might affect the procedure (on my abdomen). She said that she’d actually operated on a few patients with EDS, and that it probably wouldn’t. I showed her the laxity of my skin (about 3 inches, not the craziest for cEDS but very much Not Normal Looking). She reacted audibly, admitted she didn’t know how that level of laxity would affect things, and was very glad I showed her.

This is what happens when subtypes aren’t specified. This is what happens when we use ‘hEDS’ and ‘EDS’ interchangeably. This is what happens when only the musculoskeletal stuff and chronic pain are talked about.

[gleditsia-triacanthos]

“It’s not about the amount of days in your life but the amount of life in your days.”

- A healthy person with a normal life expectancy

[dilfgmancoolatta]

Disabled people who hate being disabled and wish they were born without their disabilities and/or never existed deserve a place at the table too btw

[crippled-peeper]

full disclosure when people are like “people would ABSOLUTELY take me seriously and treat me with sympathy and understanding if I had something serious like a spinal cord injury!” all it says to me is that they don’t know any person with a spinal cord injury that isn’t a character from a franchise

[gleditsia-triacanthos]

Literally. The level of infighting in the disabled community and the JEALOUSY I get from certain ambulatory people/people without SCI astounds me. There is no magical disability line that everyone takes you seriously for crossing. Paralyzed people get fake-claimed.

[raccooninapartyhat]

hate how being visibly disabled makes people talk to you like a dog, and not even in a fun way

[frogsfordisabilityjustice]

Friendly reminder that not every chronically ill person can physically, mentally, or financially "try everything."

The "miracle cures" and the "well, have you tried this?" solutions are typically expensive and extreme. Most of us cannot afford to throw money around on something we have not even been advised to do by a medical professional. A lot of disabled people are in poverty and medical debt.

For a lot of us, if we try one of these extreme, experimental "miracle cures" it could end up with our health declining, to the degree that (for those of us who do this) we can no longer work, go to school, or even just take basic care of ourselves.

We are not as invincible as healthy people. Small things that might make someone feel a little unwell for a few days can impact us for our entire life.

So no, I have not "tried everything." Most people haven't. Most people cannot. Please stop doing the "have you tried xyz" thing at chronically ill people. Best case scenario it's a little silly, worse case scenario it's just salt in the wound.

[gleditsia-triacanthos]

Also, the assumption that chronically ill people haven’t done their research and tried as many fixes as possible is frankly insulting. “Have you tried xyz?” is such a stupid question because the answer is almost invariably a) yes or b) there’s a very good reason no.

[crazycatsiren]

As someone who used to be invisibly disabled and is now visibly disabled, I can assure you, pity is not acceptance and certainly not accommodation.

[bebsi-cola]

i think people don't know how to differentiate between hard access issues and soft access issues, or don't want to. a lot of access issues aren't clearly one or the other but having no ramps is a hard access issue for obligate wheelchair users. you've gotta stop comparing every accessibility issue to ramps.

because when you compare a soft access issue (an issue which makes accessing somewhere or something painful, difficult, insulting, frustrating, etc) with a hard access issue (an issue which makes accessing somewhere or something impossible) then you inadvertently imply that the persons who experience those hard access issues don't also experience soft access issues.

like say you have a disabled student in a wheelchair. education is famously inaccessible, so everyone says "not providing this is like not providing a ramp." but it's not, firstly because they don't even provide ramps much of the time. like they straight up aren't doing that and you're acting like it's this horrible impossibility that we should understand is super bad so you can compare your own thing to it. which is just incorrect when they're not doing it.

but let's say there's a ramp. so there's a ramp but it's a 5 minute detour to get to so the wheelchair user is always late. the desks are too high to see past, the lecture hall has automated doors but no dedicated wheelchair space so they have to sit off side. can they see properly? does someone catch them up with the missed introduction? where will they take notes?

and the accessible route can be even longer than a 5 minute detour. the route might be round back, next to all the trash/rubbish. that's not dignified but it's also not sanitary either, which is dangerous to disabled people. is it round back where everyone smokes? i sure hope that wheelchair user has no respiratory issues. are they getting penalised for being late all the time? will that affect their attendance? what if they're an international student on a visa and need high attendance to stay in the country? there's a million soft access issues that are present even if the bare minimum of basic access (can i get inside) is met. but yeah there's a ramp. so whatever i guess

[gleditsia-triacanthos]

So true. This isn’t entirely what OP was talking about, but I also notice a lot of people with soft access problems saying they can’t do certain things when in fact they struggle to do certain things. There’s room for everyone at the table, and a task being made significantly difficult is disability, but failing to clarify the difference between “I can’t” and “it’s very hard for me” means that a lot of people are convinced that I (as someone who is completely non-ambulatory) can stand to reach something on a high shelf. Or walk down a single step. Or get into an Uber without help. Important distinction.

[gleditsia-triacanthos]

To be clear, describing part-time wheelchair users as part-time is not an attack or form of shade.

Since I’ve heard people start using this term, I’ve heard a pretty much equal amount of backlash and indignation in response.

A lot of people are used to using the term “ambulatory,” and I think a lot of the negative response comes from the idea that “part time” is synonymous, and just holds a different connotation. The truth is that all part-time wheelchair users are ambulatory but not all ambulatory wheelchair users are part-time. Ability to walk or move without a wheelchair in ambulatory people is a huge spectrum, and the labels of part/full time just help to clarify level of reliance on one. People may be physically able to walk, but the safety and practicality of getting up out of one’s wheelchair ranges, and inaccessible environments can affect people with varying levels of wheelchair use greatly.

If you are part time and think that term may help you describe your situation, awesome! If you don’t think it’ll help, that’s also fine. If you are offended, though, by being described as a part time wheelchair user as someone who uses a wheelchair part time, it may be time for some self-examination.