Reflecting on the never ending attempts to fix my dysfunction. To make myself functional, to get rid of the dys and replace with superhuman. Because that is what it would take. To be superhuman. And I was, inconsistently, and then paid dearly for both success and failure.
To say disabled has been anathema for me. Not once did I stop to ask myself, maybe I struggle so much because I simply cannot. But when you spend a lifetime doing impossible things, it becomes a personal failure you cannot do the impossible thing every single day, rinse and repeat, with no rest or end in sight, no support, no understanding, no, no, no.
No is a word I am also learning to embrace. No. No, I do not want to do that again.
You bring up the tough truth: getting labeled as disabled isn’t just about identity or self-acceptance - it can be the line between getting Medicaid, Social Security, and basic survival, or getting nothing. That’s real, and it’s unfair that a single word or a diagnosis - even when it’s incomplete or boxed-in - holds so much power over our options.
Let’s call it what it is: the system is set up to force people to jump through hoops just to get their needs met. You shouldn’t have to fit someone else’s definition of “disabled” to access what you need to live, but right now, in most places, you do. And with this federal administration, cutting through that red tape is getting tougher, not easier.
The fight for change will keep going, and yeah - it takes folks like you, Sher, to push it forward. But until the system catches up, people have to do what they have to do. Labels aren’t freedom, but sometimes they’re the only ticket to the basics. And if that’s the game, nobody should blame you for playing it, even as you work to rewrite the rules. Change is slow, but speaking the truth about this stuff is always a step toward making it happen.
Thank you, Woodrow. You said it so clearly—labels aren’t freedom, but sometimes they’re the only way through a locked door. I deeply appreciate your grounded truth and solidarity. We are rewriting the rules, even if we still have to play the game. 💛
When have you been told you were “fine” when you weren’t?
- for three whole decades and then some… but let’s just say one of the most egregious ones was the fact I found myself in the military where they bar autistics and had barred and are barred queer folk
How has ableism shown up in your work, education, healthcare, or relationships?
Work: constant erasure of need, access, necessary accommodation. I had some support being a clinically diagnosed PTSDer and depressive, but if it didn’t fit the boxes enough, I got vast amounts of animus, and eventually fired.
Education: my ‘giftedness’ erased my ‘ungiftedness’ and while I was classed with operational defiant disorder, nothing ever came of it because the Marnie be masking by the end of elementary school 😅
Healthcare: diagnosed with other conditions instead, gaslit because I didn’t have the language or perform. My current prescriber is wonderful though, and has worked with me every step of the way ☺️ but even the system that selects people like us, spits us out with the only therapy option available (without hoops) doesn’t work with our minds!? (VA does CBT therapy exclusively… at least my local one)
Relationships: I attract narcissists… and lose friends easily
What would a world look like where you didn’t have to explain yourself to be believed?
Honestly, not /much/ different from the one I live in now… at least in a direct manner, but I often cite my immense fortune in my position at this point, and it wasn’t without immense struggle, I’d need a finer question than this to answer further 😅
15 years ago my immune system decided to attack my pancreas, so for 15 years I've been constantly vigilant about my blood sugar levels, my stock of insulin, the temperature of rooms I'm in, the distances I have to travel, the types of food that are available wherever i go, having to explain why I'm not rude for refusing a drink or a snack, and terrified of not having income to pay for my glucose monitor patch and my insulin.
And yet, even though I've incorporated disability justice into my work, I have resisted even thinking of myself as disabled, because of the level of disadvantage that comes with not adhering to ableist culture. It's a sad state of affairs when we have internalized ableism even wulithout the benefits of being abled
Thank you so much, Rebecca. 💛 You always ask such thoughtful questions and your presence here continually stretches me in the best ways. I deeply appreciate the accountability and clarity you bring—this is exactly how an open space like this evolves and grows together.
When I refer to “pathologized language that becomes normalized,” I mean the ways clinical or diagnostic terms make their way into everyday conversation in ways that can reinforce ableism without us realizing it. Here are a few concrete examples:
Words like “trigger” and “crisis” are often used casually in meetings or community spaces, without acknowledging that they carry deep clinical or trauma-related connotations. For some, hearing “trigger warning” used out of context—or hearing someone described as “having a crisis” when they’re just upset—can feel minimizing or even retraumatizing.
Terms like “high-functioning” or “low-functioning” get used to simplify complex neurodivergent experiences into hierarchies of perceived value, when really, functioning is always relational and contextual. These terms uphold ableist standards of worth tied to productivity and compliance.
And increasingly, I’ve noticed “support levels” (e.g., “Level 1 Autism”) being used as identity markers instead of clinical tools. This can erase nuance and lead to gatekeeping—where people feel forced to “prove” their disability or are dismissed because they’re “too functional” to count.
Let me know if that helps clarify, or if more examples would be useful. Grateful for your thoughtful engagement always. 🙏
That was very helpful, thank you. I also want to thank you for not being offended by my direct questions. And not becoming defensive and accusing me of attacking your credibility. I don’t understand why many people take offense to simple, direct questioning. And even basic yes or no answers seem to put people on the defensive. This has been a problem my entire life. I’m just seeking clarity and trying to learn. Very frustrating. But again, thank you for the concrete examples.
Reflecting on the never ending attempts to fix my dysfunction. To make myself functional, to get rid of the dys and replace with superhuman. Because that is what it would take. To be superhuman. And I was, inconsistently, and then paid dearly for both success and failure.
To say disabled has been anathema for me. Not once did I stop to ask myself, maybe I struggle so much because I simply cannot. But when you spend a lifetime doing impossible things, it becomes a personal failure you cannot do the impossible thing every single day, rinse and repeat, with no rest or end in sight, no support, no understanding, no, no, no.
No is a word I am also learning to embrace. No. No, I do not want to do that again.
THIS! So much THIS!
You bring up the tough truth: getting labeled as disabled isn’t just about identity or self-acceptance - it can be the line between getting Medicaid, Social Security, and basic survival, or getting nothing. That’s real, and it’s unfair that a single word or a diagnosis - even when it’s incomplete or boxed-in - holds so much power over our options.
Let’s call it what it is: the system is set up to force people to jump through hoops just to get their needs met. You shouldn’t have to fit someone else’s definition of “disabled” to access what you need to live, but right now, in most places, you do. And with this federal administration, cutting through that red tape is getting tougher, not easier.
The fight for change will keep going, and yeah - it takes folks like you, Sher, to push it forward. But until the system catches up, people have to do what they have to do. Labels aren’t freedom, but sometimes they’re the only ticket to the basics. And if that’s the game, nobody should blame you for playing it, even as you work to rewrite the rules. Change is slow, but speaking the truth about this stuff is always a step toward making it happen.
Thank you, Woodrow. You said it so clearly—labels aren’t freedom, but sometimes they’re the only way through a locked door. I deeply appreciate your grounded truth and solidarity. We are rewriting the rules, even if we still have to play the game. 💛
When have you been told you were “fine” when you weren’t?
- for three whole decades and then some… but let’s just say one of the most egregious ones was the fact I found myself in the military where they bar autistics and had barred and are barred queer folk
How has ableism shown up in your work, education, healthcare, or relationships?
Work: constant erasure of need, access, necessary accommodation. I had some support being a clinically diagnosed PTSDer and depressive, but if it didn’t fit the boxes enough, I got vast amounts of animus, and eventually fired.
Education: my ‘giftedness’ erased my ‘ungiftedness’ and while I was classed with operational defiant disorder, nothing ever came of it because the Marnie be masking by the end of elementary school 😅
Healthcare: diagnosed with other conditions instead, gaslit because I didn’t have the language or perform. My current prescriber is wonderful though, and has worked with me every step of the way ☺️ but even the system that selects people like us, spits us out with the only therapy option available (without hoops) doesn’t work with our minds!? (VA does CBT therapy exclusively… at least my local one)
Relationships: I attract narcissists… and lose friends easily
What would a world look like where you didn’t have to explain yourself to be believed?
Honestly, not /much/ different from the one I live in now… at least in a direct manner, but I often cite my immense fortune in my position at this point, and it wasn’t without immense struggle, I’d need a finer question than this to answer further 😅
15 years ago my immune system decided to attack my pancreas, so for 15 years I've been constantly vigilant about my blood sugar levels, my stock of insulin, the temperature of rooms I'm in, the distances I have to travel, the types of food that are available wherever i go, having to explain why I'm not rude for refusing a drink or a snack, and terrified of not having income to pay for my glucose monitor patch and my insulin.
And yet, even though I've incorporated disability justice into my work, I have resisted even thinking of myself as disabled, because of the level of disadvantage that comes with not adhering to ableist culture. It's a sad state of affairs when we have internalized ableism even wulithout the benefits of being abled
“Pathologized language that becomes normalized in everyday conversation”
Can you please give an example of this?
It’s not clear to me what you mean by “ pathologized language” in this context.
I do better with concrete examples of things. Thanks! 😊
Thank you so much, Rebecca. 💛 You always ask such thoughtful questions and your presence here continually stretches me in the best ways. I deeply appreciate the accountability and clarity you bring—this is exactly how an open space like this evolves and grows together.
When I refer to “pathologized language that becomes normalized,” I mean the ways clinical or diagnostic terms make their way into everyday conversation in ways that can reinforce ableism without us realizing it. Here are a few concrete examples:
Words like “trigger” and “crisis” are often used casually in meetings or community spaces, without acknowledging that they carry deep clinical or trauma-related connotations. For some, hearing “trigger warning” used out of context—or hearing someone described as “having a crisis” when they’re just upset—can feel minimizing or even retraumatizing.
Terms like “high-functioning” or “low-functioning” get used to simplify complex neurodivergent experiences into hierarchies of perceived value, when really, functioning is always relational and contextual. These terms uphold ableist standards of worth tied to productivity and compliance.
And increasingly, I’ve noticed “support levels” (e.g., “Level 1 Autism”) being used as identity markers instead of clinical tools. This can erase nuance and lead to gatekeeping—where people feel forced to “prove” their disability or are dismissed because they’re “too functional” to count.
Let me know if that helps clarify, or if more examples would be useful. Grateful for your thoughtful engagement always. 🙏
That was very helpful, thank you. I also want to thank you for not being offended by my direct questions. And not becoming defensive and accusing me of attacking your credibility. I don’t understand why many people take offense to simple, direct questioning. And even basic yes or no answers seem to put people on the defensive. This has been a problem my entire life. I’m just seeking clarity and trying to learn. Very frustrating. But again, thank you for the concrete examples.
I don't get it either. I like your questions they help me learn.