#Self Advocacy

[my-autism-adhd-blog]

Self Advocacy Scripts I Rely on as an Autistic Person…

Neurodivergent_lou

[capricorn-0mnikorn]

Quote:

A MARTÍNEZ, HOST:

One in six eligible American voters now has a disability, and a third of eligible voters either has a disability or lives with someone with a disability. This voting bloc is growing as the population ages. That's according to a recent report by Rutgers University. It found that the total number of eligible voters with disabilities exceeds the total number of either Black or Hispanic eligible voters.

[fatliberation]

hello!! i’m trying to learn how to advocate at the doctors while being fat- basically how to get past the ‘you need to lose weight’ convo (or prevent it entirely) and actually get treated. i’m so sorry if you already have a master post about this- any respurces you have would be v welcome!!

I do have a post about this somewhere, but the tumblr search feature swallowed it up & I can't find it >:/

But I know that Ragen Chastain has printable cards with helpful phrases and research to give to your doctor, and more recently, she posted templates to ask for accommodation at the doctor's office.

[crazycatsiren]

The most important lesson I've learned since becoming disabled, navigating this world that inherently hates disabled people? If you don't advocate for yourself, then no one will.

This truly applies to all areas of life, too. If you sell yourself short, then shorter than short is what you're going to get. If you settle for less, then you're going to receive less than less.

The only way to go is standing by what you're entitled to and standing firm with what you deserve. If you don't ask for it, then no one's going to offer to you. If you don't speak loud and clear, then no one's going to hear you.

[ididoktoday]

I bet you did the best you could today.

May you come to see that performance as the most any human could ever ask of you.

I bet you made the best choices you could with the information you have.

May you come to understand all the lessons the Universe has to teach you.

I bet you regulated your emotions with as much skill as you were taught by those who cared for you when you were young.

May you come to befriend your full spectrum of emotions and come to see them as helpful information that you engage with consciously and curiously.

I bet you cared for your body with as much love as you’ve been led to believe you deserve.

May you come to see yourself as deserving as much love as the whole Universe holds.

[snakeautistic]

I’m really bad at advocating for myself because I find my ability to communicate is extremely limited under stress. It’s frustrating because I will be struggling overstimulation or overwhelm that could be eased by simply going somewhere different, or asking a clarifying question, but while in this state I do not have the ability to communicate with people around me. Part of this is just the social effort of it all, but it also has to do with the shame I feel for asking for ‘special treatment’ or bothering people.

An example of this was recently when I was retaking my math test and the room was extremely noisy, making it hard to focus. Now, due to my accommodations I’m sure I would have been allowed to ask to be moved somewhere quieter, but at that time I wasn’t able to muster up the social energy communicate that. Another example is when I sometimes unfortunately break down in class, and begin to sob. I would feel a lot better if I went to the bathroom to cool down, but I am not in the state to communicate this and ask to leave , so I wait until an adult takes pity on me and tells me directly I should probably go cool off.

[404-wordmojis-not-found]

Just some random ones, including a bit of self advocacy.

[serenityquest]

[worldwidewet]

Can I have advice on how to advocate for myself?

I am one of the alters in a system, I think I front the most often after the host, and I have met a mental health professional I feel very unsure of.

I have developed some skills to stop and analyze situations before I act thanks to a DBT skill course, but I have currently only come to the "stop" and "notice I feel bad" stage in this analysis. Anything else feels fuzzy and difficult.

On one hand, he seems like he is genuinely interested in our general wellbeing.

On the other hand, in my opinion, he seems to be pushing towards integration without having us on board with that. I understand this is not necessarily bad, and that I am in a strong emotion right now, but it is setting off all of my alarm bells. I feel like he isn't listening. I feel like he doesn't understand. I feel like he is pushing us to talk about ourselves in a very specific way as to go towards integration. Some things that I can't put into words makes me feel like we are like a project to him, a problem to be solved, and that disagreeing would make him personally upset. I recognize logically that I could be wrong, and that my impulse to change care provider is just that, an impulse guided by a strong emotion.

Okay, therapy speak nuance over. Cancelling therapy forever. In self defence...

Basically, how do I figure out if this is a real threat or a perceived threat and how I should act in order to get to a place that is actually safe?

(I'm tagging this with different related tags in order to find help, I'm not claiming all these tags apply to me)

[theuniversalscat]

[vixdoez-symbolz]

Self Advocacy Symbols

"Yes I'm actually disabled"

"No I'm not faking a disability"

"That's a fucking slur?!"

[petrichoremojis]

image descriptions in alt text

variants of our "i'm not comfortable with that" symbol!! from top left to bottom right, they are: suicide, suicide jokes, OCD jokes, gore, self harm, self harm (variant), self harm jokes, self harm jokes (variant), sex, sex jokes, alcohol, and weed

thank you to the AACIL server for the requests and suggestions!! the glyph for the sex and sex jokes variants are by M, who runs AACIL!!

[schar-aac]

"I use symbol AAC"

image: two stylised blue hands moving around a yellow circle with a red rectangle in it. the circle with a green outline

[intersex-support]

do you (or followers) have tips for asking a dr for a hormone panel blood test?

Hi anon!

Definitely! I'll share some things that have worked for me, and if any followers want to add on please feel free! In general I've found that there can be a lot of barriers, ranging from doctors having bias, getting offended if you come in with a suggestion, not wanting to make referrals, and so many other things. I also think for a lot of us who are multiply marginalized, we often have additional layers of concern, and sometimes self advocating at the doctors can put us more in danger. So feel free to ignore any tips that don't seem relevant for your situation!

Writing down a list of symptoms that you're experiencing so that you can have really specific concerns to bring in. Instead of saying "I just want a hormone panel ," say something specific like "I'm experiencing x, y, and z. Would it be possible to get a hormone panel to see if that's something that could be possibly causing these symptoms?"

Instead of saying "I think I have xyz diagnosis and I need you to test for it," ask if you can get a general hormone panel to get "more information/rule out possibilities/see if it's worth going to see a specialist."

Avoid using the word intersex--doctors often don't recognize it, only use DSD terminology, or start to feel defensive.

If you do need to mention a specific diagnosis because of the kind of testing you need, lie and say that someone like a friend, a coworker, an relative, has a specific diagnosis and recommended that you did this testing.

Lie and say that another doctor recommended that you should go get this testing.

Bring in someone with you to the appointment who can support you and help you advocate.

If they say no, ask why and ask them what alternative plan they have to help you deal with your symptoms. Ask for a referral to a doctor for a second opinion.

Followers, anything to add?

[fatliberation]

Do you have any resources on going to the doctors while fat? Im tired of not being taken seriously, and I dont want to potentially trigger an ED relapse cause my weight was measured.

Oh, you know I do!! ✨

So, you actually do not have to be weighed at your doctor’s visit! You can explain to them that it is triggering for you, or you can simply opt-out and say “I’d like to decline being weighed today.” If you have to be weighed for something such as anesthesia or medication dosage, you can request a blind weigh-in, where you step on the scale backwards and the nurse will not show you the number they write down. You can also close your eyes.

If you’re feeling uncomfortable, you can go home at any time. Get up and walk away. Not feeling good about the experience is enough reason to end the appointment. You can say:

“I’m really uncomfortable in this appointment. I am going to put my clothes back on and leave.”

“I’m feeling overwhelmed right now. Can we reschedule this appointment?”

You don’t have to explain yourself to your doctor, and don’t worry, they’ve likely experienced this before. It’s written in the patients’ bill of rights that you have the right to refuse medical treatment that’s recommended by your physician and that you should be able to work with your doctor on mutually agreeable terms.

You may also request an online or phone appointment instead of in person. It’s f*cking ridiculous that this is actually true, but since covid began a lot of fat people have been receiving better care over telemedicine because our bodies are less visible.

If you get pushback from your provider, I recommend finding a new doctor. Your boundaries should be respected. Health At Every Size has resources to help you find a practitioner who will focus on your health independent from weight. (And here’s a list of fat friendly practicing health professionals by fatfriendlydocs.com. If you’re in the U.S., you can look them up by state.)

In the meantime, setting boundaries is your last resort. Let your doctor know that you are uninterested in pursuing weight loss, that dieting is a predictor to developing an ED, (and in your case, severely triggering for the ED you’ve already been struggling with). Ask them what treatment they would recommend for someone in a thin body, and request that they treat you the same.

If they don’t, ask them to make notes of the conditions they’re dismissing based on your weight. “Can you please make a note that you refused to test me for X on my file?” This might change their mind, or at least when you see someone else it’ll be on your notes and that other GP will (hopefully) take you seriously.

Here’s a video by @classyfattybabe that shows an example of this and other specific phrases to set boundaries with your doctor.

I am so sorry you have to advocate for yourself at the doctor’s office. No one should ever have to go through this. My heart is with you. Best of luck at your next visit, love ❤️