1: "Intersex people are biologically nonbinary, which proves the existence of genders other than male/female."

This sucks. Intersex people are not biologically nonbinary, because being nonbinary typically has to do with gender, not sex. However, I am giving this the slightest amount of credit, simply because at least it acknowledges that intersex people exist and that genders other than male/female exist. I see this statement a lot and honestly it sucks. Intersex people and nonbinary people can be valid without one explaining the other. 1/10

2: "Some people aren't afab or amab. Those people are called intersex."

Bad bad bad I hate it. Asab/agab language has a lot of shitty things about it, most notably in the way it harms trans and intersex people. Like, y'all know that intersex people are usually still assigned male or female at birth, right? Often through IGM. And there's also those like me, who were reassigned male or female later after birth. We're still intersex. It's INCREDIBLY rare for intersex people to not be assigned a sex/gender at some point in their life. There's literally no truth in this. 0/10

3: "Intersex people can't have both."

If you're familiar with my blog, you already know my thoughts on this statement. I debated on whether or not I should add this one here, since I've seen it come from other intersex people a lot too, but whatever. I'm going to give it at least some credit for the ATTEMPT to teach people what ambiguous genitalia is actually like on intersex people, but it falls short in so many ways. Links to more of my discussion on this sentiment here: Link 1! Link 2! Link 3! 1/10

4: "Intersex people aren't actually a third sex, they are just males and females with disorders of sexual development."

Fuuuuck youuuuu. The only reason this one isn't a 0/10 is because it's technically true that intersex people aren't a "third sex", since there's a virtually infinite amount of ways for us to be. But also, it's incredibly disrespectful to call intersex conditions "disorders of sexual development", or "DSDs". Intersex bodies aren't disorders, we are just atypical. 1/10

5: "Being intersex means you are a mix of male and female."

No, wrong. Being intersex means you are born with atypical sex traits, or have atypical sex traits develop without external reasons. (Some variation is allowed in this definition, depending on what intersex person you're speaking to. And that is okay!) There are plenty of intersex people whose traits aren't a mix of male and female. Also, this is disrespectful to transgender and nonbinary perisex people who consider themselves to be a mix of male and female, or who have a mix of male and female sex traits from HRT, surgery, etc. I'm not going to give this statement any credit, because I can't find anything true about it. 0/10

6: "This is my intersex oc! Can you help me write a sex scene for them?"

A lot of intersex blogs get asked this, and it gets annoying. They often don't specify what intersex variation/traits their oc has, since they think being intersex is one specific thing. And like. You can probably figure out how to write a sex scene for an intersex character all on your own if you just listen to us talk about our experiences with sex/masturbation instead of dumping your specific idea of intersexuality on us and expecting to get advice other than "research actually intersex people using intersex-supportive sources". I will give this one credit for attempting to be supportive of intersex people, though. 3/10

7: "I wish I was intersex."

I sympathize with you. This sentence almost always comes from a place of dysphoria, but the person saying it usually doesn't realize what being intersex entails. We're almost always still forced into male and female boxes, with IGM and forced HRT. Being intersex wouldn't alleviate your dysphoria, because you'd still likely be forced one way or another. They also don't specify what kind of sex traits they want, because they think being intersex is one specific way of being. Perhaps a better statement you could say would be "I wish I had sex traits atypical of pericis males/females," because there's nothing wrong with that, and that is in fact achievable! You can get HRT and surgeries to also have atypical sex traits, and it's completely fine, awesome, valid, and normal. You can do all that without being intersex, and often times it's easier to access the HRT and surgeries you need when you're perisex. I rate this sentence in between bad and good, because it usually just comes from a place of misunderstanding, and can be corrected with some explaining. 3/10

8: "Intersex people are awesome and I should give them my money."

- Paralysis obviously: weakened or absent muscle function below the level of injury. It can be zero movement of any kind, or weakness. Incomplete SCIs are very common, so partial paralysis is common. Personally, all of my paralyzed muscles have some amount of movement and I can walk very abnormally and with mobility aids for short distances. Some of my muscles are 1/5, most are 2/5 or 3/5, and some are 4/5. I didn’t have complete return of motor function anywhere below my injury, but it does happen to some people. For reference, here’s a brief description of strength grading for SCIs: 1/5= flickers of movement (visible twitches or feeling a slight muscle contraction when touching the muscle), 2/5= movement but too weak to move against gravity, 3/5= movement strong enough to move against gravity, 4/5= markedly weak, 5/5= normal strength. If you’ve ever had a broken bone and been in a cast for 6 weeks, the weakness and stiffness you felt immediately when the cast came off is what a 4/5 SCI muscle feels like. Most people have never experienced muscle weakness equivalent to even 3/5 SCI strength.

- Paralysis of trunk and arm/hand muscles: this is poorly understood by many. Trunk paralysis makes balancing extremely difficult. I can’t sit up unsupported, so I need a supportive backrest all the time or I’m leaning on my arms. Quadriplegics can have total paralysis below the neck, or may have some arm movements but not others. Hand paralysis with working arms or only triceps paralysis is common. Any hand-related task is difficult. Triceps paralysis makes pushing a wheelchair difficult. Many disabled people talk about “pushing through,” “borrowing spoons from tomorrow,” “paying for it later,” and similar statements. With paralysis, we simply cannot do that. We cannot go to that place that our wheelchairs can’t go. We cannot get ourselves into that inaccessible car. I can’t count the times where someone has suggested I do something and just plan to rest later.

- Paralysis of the diaphragm and other breathing muscles: common in quads. Paralysis of trunk muscles (specifically those little muscles around your ribs) affects breathing as well. High-level quads (C1-C2) often need ventilators 24/7.

- Spasticity: involuntary contraction of paralyzed muscles. May be general tightness/rigidity, clonus, or other abnormal involuntary movements or posturing. It’s not painful for me, but I’m sure it can be for some. Spastic muscles move with an extreme amount of force. I’ve had a leg spasm and shoot out and hit something hard enough to break bones in my feet. Injuries above T12 typically cause spastic paralysis, while injuries below typically cause flaccid paralysis.

- Loss of sensation: below level of injury. For me, this is impaired but not completely absent sensation below C3 (base of the neck). I don’t always feel pain, so I’ve burned, cut, and bruised myself without realizing. I also have trouble with non-painful sensations, so I might not notice if I’ve bumped or dropped something or if my pants are sliding down or whatever.

- Temperature dysregulation: we’re really prone to heatstroke because we don’t sweat as much. We often feel extremely cold or hot when it’s just slightly cool or warm.

- Circulation problems: low blood pressure (orthostatic or all the time).

- Autonomic dysreflexia: occurs in people with SCIs above T6, due to any sort of below-injury stimulus (bladder full, need to poop, stubbed toe, etc.). Causes various weird autonomic symptoms like sweating, goosebumps, fast heart beat, pounding headache, flushing, and high blood pressure. Can cause extreme high blood pressure leading to strokes and death.

- Skin breakdown: common in SCIs. We have partial or absent sensation in our skin below our injuries. We don’t have that feeling to tell us if we’re sitting in a way that’s pinching something or if we’ve been in the same position for too long and need to adjust. Sitting in one position for too long reduces circulation and makes the skin breakdown, causing pressure sores. This is managed with special cushions, long periods (months, often) of bed rest, specialized wound care, and surgeries. People with SCI often die of pressure sore complications.

- Neurogenic bladder: people with SCI have bladder dysfunction. We almost always use catheters to empty our bladders. Intermittent cathing (inserting a single-use catheter for a few minutes several times a day) is common. Suprapubic catheters (permanent catheters surgically placed in the belly) are also popular. Some people (like me) have a Mitrofanoff channel, which is a surgical procedure to make intermittent cathing easier, where a tube is made to connect the bladder to the belly. Others have a urostomy. These are major surgeries. UTIs are common. It’s not unusual for someone with an SCI to have 10-15+ per year. Infections and kidney damage are common causes of death in SCI. Incontinence is common.

- Neurogenic bowel: people with SCI also have bowel dysfunction. We almost always do a daily/every other day bowel program. This may involve manual evacuation, digital stimulation, rectal suppositories, and/or transanal irrigation or large volume enemas. Some people get a colostomy or other surgical procedures. Incontinence is common.

- Sexual dysfunction: absent or reduced sensation, orgasms, erections, etc. The nerves that control bladder, bowel, and sexual function are all at the very base of the spine, so basically 100% of people with SCI have these issues.

- Osteoporosis: typically below level of injury due to lack of standing/walking, but milder bone weakness also occurs in walking SCIs.

- Chronic fatigue and chronic pain: lots of reasons and presentations in SCI. Positioning issues, weak muscles poorly supporting joints, overuse injuries, and lots of other stuff. All extremely common for us.

- Neuropathic pain: this occurs due to the nerve damage from SCI. Can be mild or extreme and totally debilitating. Can improve with time, but may not completely resolve or improve at all.

- Psychological consequences: PTSD is common among people with acquired SCI. Acquiring an SCI is a near-death experience.

Like I said, I’m a walking quad. For me, this means I walk inside my home with a marked gait abnormality and I fall often. I walk short distances (<1000 feet total, usually) outside of home with leg braces and crutches. I primarily use a manual wheelchair for mobility. I catheterize my bladder 6 times per day with an intermittent catheter via my Mitrofanoff channel, which takes about 5-10 minutes each time. I do my bowel program daily using a combination of manual evacuation and transanal irrigation, which takes about an hour every day. I depend on lots of expensive special equipment to stay alive- manual wheelchairs (primary and a backup), AFOs, forearm crutches, a special mattress topper to prevent pressure sores, a standing frame to stretch my spastic legs, 200 single-use catheters per month, bowel irrigation system, the list is endless. Neurogenic bladder and bowel alone are seriously disabling, and paralysis even more so. I’m quite severely disabled even as an ambulatory quadriplegic who doesn’t have the same degree of accessibility limitations due to being in a wheelchair 100% of the time. This isn’t to say that SCI is the most disabling disability ever or to otherwise compare SCI to others unfairly, just to provide accurate information about a poorly-understood disability.

sorry if this ask if annoying, by all means dont answer if you dont wanna

What you are feeling is so very normal. I went through the exact same thing. The first 2 years after a spinal cord injury are your most vulnerable in terms of mental health. Disability Tumblr is not a good place to be during that time. You need likeminded friends and community more than ever, who will treat you with compassion and understanding

You can’t make the anger you are feeling simply go away. It is a healthy reaction to being put in this terrible confusing position. but you can grow around it. It does get easier. I promise.

I suggest you surround your self with the words and the company of other paralyzed people and additionally, critically and terminally ill people. I don’t mean people with hEDS on tumblr or tiktok. I mean find (online or offline) support groups SPECIFICALLY for people with spinal cord injuries. You are not simply “disabled” or have “chronic pain” in the vague sense, you have a very specific condition and your entire lifestyle is now structured around it. These people can show you that a comfortable and a content life is not only possible, but within reach.

- look for irl SCI community. Adaptive sports and rec is the go-to recommendation for irl connection. My area has pretty active programs. Look for an adaptive gym as well, these tend to be connected to your city’s hospital system or the rehabilitation hospital. Look for an irl SCI support group. My city has a monthly support group facilitated by OTs and social workers, and we have occasional social meetups as well. Check out adult SCI camps/retreats like Possability, and the Abilities Expo.

- assuming you did inpatient rehab in a specialized rehab hospital (e.g. Craig, Shepherd, Brooks, Shirley Ryan, various university medical systems’ rehab units/hospitals, etc.), you can contact them for specific info about local resources. If you were in a rehab unit of a smaller hospital, you can probably get in touch with them for the same resources, but I stayed in one of the big hospitals so I can’t speak to other places’ openness to following along after discharge. Look for vocational rehabilitation and other agencies for disabled people. You may be able to connect with a peer mentor- my city’s rehab hospital has a program that coordinates this.

- if you can’t find irl groups, or as a supplement to irl groups, look for online groups. United Spinal I think coordinates some. If you have specific questions about something, r/spinalcordinjuries can be helpful. I think they have a discord server, which is pretty active iirc.

- there are lots of people talking about various experimental SCI treatments. Stay critical of any claims about treatments not currently being offered to the general population, like NervGen or Neuralink, as well as treatments not available under insurance coverage like stem cells and epidural stimulators. If keeping up with the news on them isn’t upsetting to you then research away, but know that we are not actually getting a cure anytime soon. They’ve been telling us we’re “5 years away from a cure” for literally decades (I had a rugby coach who was told this during his inpatient rehab stay in 1985). You’re not pessimistic for not uncritically buying into claims about experimental cures. Do consider signing up for SCItrialsfinder if you’re interested in participating in research though.

- limit time in general disability spaces online. Personally, I completely ditched tumblr from shortly after my injury until I started this blog sometime within the last couple of years. It’s better now than it was at that time, but I used to see endless posts about how [x chronic illness] is worse than being a quadriplegic, how people with SCI are lucky to be “taken more seriously,” etc. I still avoid specific online places like r/disability and r/chronicillness, and I’m wary of r/wheelchairs (Reddit is easier to curate than tumblr so that’s why those are my examples). I look for SCI-specific spaces, as well as other specific spaces that are relevant to me (ostomy communities because I have a Mitrofanoff stoma, incontinence communities, etc.).

- I’m personally also cautious about irl communities that are for anyone with a disability in general. I’ve been burned by those consistently. I went to a queer disability group in undergrad a couple of times, and I was largely silenced because of the immense privilege of having an SCI (because that means doctors take you more seriously apparently). When I was allowed to speak, it was only to answer questions like “how did you convince your doctor to prescribe a custom wheelchair? I want one but my doctor doesn’t want to order it” and “do you know a doctor in our city who manages long-term opioid medication?”

- have healthy boundaries with people. You don’t have to talk about your injury or other personal things if you don’t want to. Especially have good boundaries with any irl friends who might be leaning toward the “my chronic pain is worse than paraplegia” side of things. No, I don’t think it’s funny that you went out of your way to get here before we had planned to meet up so that you’d beat me to the one accessible parking spot that this bar has.

- know the signs of someone who is in any way not interacting with you in good faith, like devotees, people with diaper/incontinence/ catheter fetishes, etc. A bad friend might be rude or dismissive if you talk about SCI stuff, bombard you with personal questions, or compare themselves to you.

- YouTube has lots of great SCI info. Paralyzed Living is a guy that I’ve followed since I got hurt (literally since I was inpatient). Empowered Para is great as well. There are several other folks I follow but don’t remember their usernames off the top of my head. UW Spinal Cord Injury posts recordings of lectures about all things SCI and have been hugely helpful to me in terms of learning about medical aspects of SCI.

- if you feel like therapy would be beneficial, consider looking to see if your local rehab hospital/unit has rehabilitation psychologists. I currently see one as an outpatient. Otherwise, a therapist who specializes in trauma can also be helpful. Therapy is not a must- anger is a completely normal and logical way to feel- but if you’re interested and your anger and other SCI feelings are making it hard to live your life, it can be an option. Personally I find peer support to be much more helpful, but I thought I’d acknowledge it as an option.

there's a lot of people who have recently realized they are intersex, who have variations that aren't considered "traditionally intersex" (partially my doing lol). & many people who realized they had a variation that counts as intersex, have spent much of their life passing as and seeing themselves as perisex, and are very new to the intersex community and intersex activism.

to try to mitigate inter-intersex intersexism, i felt it would be good to write up a list of rights & responsibilities we all have as intersex people, towards each other. i think this format works well bc it reminds us that caring for ourselves & caring for each other are two sides of the same coin. we ask a little more of ourselves, in how we treat other people, so that we can receive a little more from others, bc we are all in this together.

this isn't meant to be a super formal complete thing, but i felt like it would do people some good to explicitly state these values & put them out there to be considered. especially since many ppl on this site (& in general) are autistic/neurodivergent & may benefit a lot from explicit advice on how to engage w others!

all people with sex trait variations outside of what is typical for "males" and "females" have the right to find their place in the intersex community, and use the label without explanation or apology. there is no intersex hierarchy, no "you must suffer This Much to ride," no giving the authority to decide what intersex means to perisex doctors before sex variant people themselves.

we have the responsibility to keep our most vulnerable siblings at the center of our community, like penguins in a huddle. that means people (esp children) who have been or are being targeted by CIMI due to their intersex traits. it also means multiply marginalized intersex people, especially intersex people of color and non-western intersex people. those who intersexism strikes first and hardest deserve the most community support.

we have the right to make sense of our lived experiences through the framework of intersexuality, and to talk about our experiences using that language. we should be able to expect the community to hold space for our stories, our experiences, our needs as intersex people.

we have the responsibility to educate ourselves on other intersex people, to hold space for their stories and experiences and needs. we should educate ourselves on intersex terminology and history, and we should have a basic understanding of other intersex variations and what people with different variations experience.

we have the right to call ourselves intersex, even when people w internalized intersexism or who use the medical model (like doctors) do not believe we have a right to the term. we have a right to use the language & framework of intersexism to make sense of our experiences with discrimination, abuse, pain, alienation, etc.

we have the responsibility to identify & deconstruct our own internalized intersexism. we have a responsibility to educate ourselves on forms of intersexism we do not personally face, and to understand how all forms of intersexism are connected & uphold the same oppressive system. we should treat every act of intersexist violence as if it happened to one of our family members, being outraged and taking action while centering the needs and voice of the actual victims.

we have the right to be frustrated, furious, depressed, anxious, traumatized about our experiences with intersexism and to be deeply affected by those experiences. we have a right to be imperfect, messy, problematic, and to struggle to do better and have that effort recognized.

we have the responsibility to show compassion & understanding to other intersex people when they are affected by their experiences with intersexism, and to put effort into navigating our own intersex pain & trauma consciously. other intersex people being imperfect, hurt people are not our enemies, nor does being an imperfect hurt person give you a free pass to treat others as your enemies.

the most powerful antidote to imposter syndrome is community and connection. so if you are just realizing that your body counts and struggling with doubt? the best thing to do is to practice being in community w those people and recognizing our shared experiences, struggles, and goals. not talking over or develop any kind of complex around more visibly or traditionally intersex people.

let me make this very clear: the expansive definition of what "intersex" means has to come as a result of being dedicated to resisting intersexism. hypospadias is able to be intersex because intersex activists make the choice to reject the perisex medical model and define the word as an umbrella term for sex variance, so people can unite under shared experience without a doctor's scrutiny of if they "count." that cannot be separated from the wider fight against intersexism, especially directed at ambiguous genitalia & "obviously intersex" variations.

i consider my hypospadias/H-VCV intersex not just because it fits my personal experiences (altho it does) but bc I see the direct line between the idea of "intersex traits can be common, they can be minor, they can be mild, it all fits under the umbrella" & the goal of truly dismantling the sex binary and all rules and boxes we draw around how bodies Should Look and Should Act and Should Identify. my indiv identity as intersex is part of a much larger picture & i identify as intersex as an active choice to connect my experiences with my sex variant traits to that goal, that dream. i do this rather than understanding my body the way perinormativity would like me to (as a disordered female), by choosing to create solidarity w other sex variant people in how we've been hurt by the sex binary. to identify as intersex is a personal choice but it's also a deeply social one. once i decide to take it on, that label cannot be separated from the context of community & our shared place in society.

-Not knowing whether you're technically closer to either perisex sex

-What sex and masturbation is like being intersex, particularly with any sort of differences in genitalia

-How different forms of HRT can affect you when you're intersex

-Having no fucking idea what your chromosomes could possibly be

-How it feels if you have a rare trait/variation, or how it feels when you don't know of anyone else with your combination of traits/variations, or how it feels to have an unnamed/unidentified trait/variation

If the child survives, the damage (a lot of times, an illness) can also last the rest of their lives. Like genital dysfunction, HIV and/or Aids and any other illnesses that other clients had.

I'm not by any means diminishing what intersex kids' parents put them through. It's fucking horrible. Nobody should be doing that to their kids.

-struggled with their gender identity just as much as you

-who are just as queer as you

-who have as much of a complex relationship with their gender and sex as you

-who have suffered and have been discriminated based on their sex and/or gender as much as you

-who have faced physical violence as much as you and often much earlier in their life than most perisex trans people

-who need surgeries and HRT just as much as you

-who are dysphoric just as much as you (with the added potential trauma of having being surgically raped)

-who are also raped and forcefully impregnated, to "fix us" and to "see what happens"

And you need to accept that while also understanding that we are not "accidental targets" of your own discrimination. We have been murdered, aborted and sacrificed since humans existed.

You also need to accept that you can't continue using AGAB terms, "our" terms, and then try and gatekeep "trans" from AFAB transfem/ trans women and AMAB transmasc/ trans men.

You also need to accept that you were not coersively assigned a gender at birth unless you suffered IGM. You having a cross put on a piece of paper, or an "f" or an "m", comes no where near to being castrated, having holes cut into you, having holes forcefully widened or sewn shut. And you need to understand that accepting this does in no way negate or downplay the violence you face later in life.

You need to accept that it is not about whether intersex people or trans people have it harder. For the person who is choking on their trauma, who was severly hurt and can't deal with it, who is legislated out of existance, it does not matter. At the end of the day, they die.

You can't keep using "cis" or "cishet" as synonyms for "not actually queer" or "unaffected by the discrimination of queer people".