brightrosefox: (Default)
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )
brightrosefox: (Default)
For those who have been messaging me asking to share my words along with the "I Will Not Keep Calm" meme, the answer is yes, you may share. In fact, to make it easier, I'll make everything shareable as one.
***

EXACTLY.

(I'm not going to back down when you tell me that autistics are cursed and suffering. I am not going to back down when you tell me that people like me must be experimented on just to see if we feel pain. I'm not going to back down when you tell me I don't have a right to speak up about my needs as an actual autistic, that your right as "someone who works with autistic peoples/a parent of autistic kids" means you know better about my brain than I do. I'm not going to back down when you blatantly announce that people like me should not exist, that our very selves should be eradicated just because you don't like how our brain works to the point where you will falsify data, lie socially, commit fraud, spread toxic propaganda, and act like you know better than me concerning my personal interests. I will not keep calm. I will not be nice. I will not tone done my anger. Until you are able to accept autism as a divergence and not a disease, I will not stop poking and aggravating and annoying you. I've had some really good teachers. I have a chosen brother who is a self-proclaimed asshole with a heart of gold, who has shown me what it is like to explode rhetoric properly, and I know how to choose a battle to fight using proper logic, reason, fact, and science. And there are many people behind me. Do you know how many autistic adults are out there? You don't. Because you don't care about the ones who can and will speak up and speak out. And I am going to help change that.)

(Addition: Because I have cerebral palsy, I will add that other disabilities, such as other neurodevelopmental disabilities, could be included. I, personally, am proud to have cerebral palsy as a part of me. Same with autism. If you want to remove my disabilities, you want to remove me. And I like me. )



Yeah, life. It does things as you get older.

"everyone can't be right
but everyone will decide

i'm not afraid of the price i pay
i won't lie down as you walk away"



Shh. I'm being sneaky!
brightrosefox: (Default)
Because I can never recall the actual daily Pain and pain relieving supplements off the top of my head that I personally take:
MSM, Pau D'Arco, Sangre de Drago, Sea Buckthorn, Vinpocetine, Nymphaea Caerulea, Serrapeptase, Noni extract, Mangosteen extract, Cayenne extract, Kava extract, Passionflower, Ashwagandha, L-Tyrosine.
There we go!

(Disclaimer: My body is not your body. My pain is not your pain. My chemistry is not your chemistry. My neurology is not your neurology. Your mileage may vary.
If you choose to research these supplements, and especially if you choose to take any of these supplements be reasonable, rational, and cautious. These supplements may not work for you the way they work for me. They may not work at all.
If you wish to purchase and test any of these supplements, I suggest the following websites: SwansonVitamins.com, Vitacost.com, PuritansPride.com, which all make quality products that I trust. I am not responsible for anything except what I type and say.
Please do not ask me simple questions that Google can answer, such as "What does this/that supplement do and how and why?" If you are unable to do a Google search, tell me why and I shall provide links. However, I am not a medical practitioner and I only study holistic medicine as a hobby. I do not know everything. It is your responsibility to do your own research and make your own decisions. However, I am happy to answer questions about how these supplements have worked with me, why, how, etc. Please holistically drug yourself responsibly.)
brightrosefox: (Default)
The Facebook status post that started it all. Read the comments. They are extraordinary.
https://www.facebook.com/BrightLotusMoon/posts/10151585193220684

So, lately I have been seeing a whole bunch of bizarre, confusing Internet Things about Finding A Cure For Cerebral Palsy, in the same fashion of Finding A Cure For Autism.
What is even worse is that I see people trying to compare autism to cancer when talking about cures, which is so fucked up I have no words.
So, as a person with cerebral palsy and various other disabilities, including one that shares similarities with autism, I have thinky thoughts.
(And no, Fibromyalgia is not included in this, since it is a different rant entirely, so I will not bring it up. I am only and specifically going to talk about Cerebral Palsy and Autism Spectrum Disorders here, which I cannot and will not compare to conditions like epilepsy or diabetes or autoimmune diseases or such.)

This is what I find so funny about people who yell about finding a cure for neurological conditions like autism and cerebral palsy. A "cure" generally means wiping out or eradicating a harmful disease. *checks self* Except that I'm not dying. All the autistic and cerebral palsy-affected friends I have aren't dying. I know this is weird logic. I know that "cure" has many other definitions. But I don't have a disease and I don't want a cure.
When someone says, "There must be a cure, [condition] is terrible, just ask [my friends with disabled kids who are having issues interacting]!"... I have to wonder, do they want the cure for the disabled people, or do they want the cure for themselves, so they can breathe easier knowing that the disabled people will fit cleanly into a neurotypical world? Oh, I know, I am going to incite some anger here.

I've seen how hard and horrifying it can be for families of autistic people and people with cerebral palsy when the families have no idea what to do and feel helpless and hopeless. I have cerebral palsy, I have family and friends with cerebral palsy, and I have several cousins and many friends with autism. But the old argument of "Just ask So-And-So whose child will never talk, etc" does nothing to tug at my heartstrings. I find it to be a very weak argument.
Yes, disabilities suck. Disabilities are fucking hard. They eat away at you. They fill you with guilt and worry and fear. But you know what? I'm not dying. I am strong as hell. I am hardcore. And this disability that people seem to fear and hate? It has given me some specifically amazing, beautiful perspectives on the world that I'm not sure those people have.

Let's ask the actual disabled people if they want cures. Come on, ask us.
Many of us might actually say yes. Many of us might firmly say no. Many people might decide they want to be treated or "improved" just enough to be able to interact better, walk better, have thorough conversations, etc. If they want cures, awesome. If they don't, awesome. But I feel as though certain charities and groups championing to "wipe out Insert Disability Here don't often take into account the actual opinions of the majority of people with those disabilities. Because yes, while it is all we have ever known and a cure may make us feel better, it would also remove a core part of who we are, something so hard-wired into our brains that we live and work with it in a sort of surreal harmony. We may bitch about symptoms, we will get pissed off at ourselves, we will lash out on bad days. Eradicating that entire condition may make it seem as though we would be better off, happier, easier to be around. But we don't know that. What if we don't like it? I don't know. Nobody knows.
In the end, we have our own voices, and it has become apparent that we need to start drowning out the voices of people who don't understand us enough from the inside. I am speaking out. I don't want to be cured from any of my disabilities. Treated, yes. Slowly healed to make myself function better, yes. Able to fully manage symptoms, yes. But a cure? An absolute cure? No thank you.

And remember: Having a cure as an option for everything would be awesome. But I refuse to tolerate it being forced upon someone or used as a soapbox for someone's rant as to why it should be given to everyone even if they don't want it.

And those are my thinky thoughts.

/I hate writing controversial posts like this, but, well, nobody I know right now wants to actually be cured. Show me some disabled people who personally want a real honest cure, and then I'll say, "Okay, awesome! Let's start scienceing! Let's get to work! Then we can have the option! Yay science!" I'm open to everything. Just not being told that my disability absolutely needs a cure for the sake of the people who are not disabled.

Also, I must copy a comment a friend on my Facebook that made me melt:
"And this is why you are one of my favorite disability advocates, because no one else calls those kind of campaigns what they are: patronizing. Well meaning, but patronizing. As a fairly high-functioning Aspie, and someone who's dealt severe OCD, anxiety and depression as long as I can remember, I would not take a magic pill that eliminated my experience with these disorders for a million dollars. Yes, the symptoms suck and I have and will continue to manage them with a combination of holistic and allopathic treatment options, but to completely erase them? No. Each one has shaped who I am, and I happen to like that person. Thank you for voicing this."
brightrosefox: (Default)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: [livejournal.com profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.

*THAT* SHIT IS INSPIRATIONAL.

So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
*****
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.
brightrosefox: (Default)
I kind of feel like throwing a tantrum and whining. You know, "Why meee? I don't wanna hurt like this! Make it stooop! I'm so tiiired!"
But part of growing up and growing wise is learning to understand how far you can raise your limits.
If there is one platitude I will forever hate, it is the "You have no limits, they are all just in in your mind" bullshit. I certainly do have my limitations. I just have to keep pushing them more and more so it takes more strength to reach them, and along the way I slowly grow stronger in my own way. Once I reach those limits, I exhaust myself, then I rest, and then I push the limits even more, because it's a goal, like climbing a mountain. I don't "push past my limits" - I push my limits beyond so I can keep reaching for them.
Just because I have my limits does not mean I can't surpass them. They will always be there, but the farther away they are, the stronger I become as I work toward them.
But I do allow myself the occasional stomping and screaming and getting angry at the pain along the way, because Dealing With It tends to get very old and very exhausting. Being told to slap on a metaphorical bandage and walk it off makes me snarl and growl. Being told to use the pain as a focus makes me determined. My pain can be a weapon in a way.
I have held these powerful masks and walls in place all my life, and eventually I must let them all come crashing down, and I have no idea what will happen then, I just know it will not be pleasant or good at all. I refuse to bow or bend to anyone else's ideas of what it means to push through pain, but I will absolutely work with my own views. If I bend, I won't break. But even if I do break, I will put myself back together. I am a Diamond. I am Steel. I am a Rose. I am a Lotus. I am fragile and powerful and You Can't Tell Me What To Do. Unless I like what you're telling me. Then I will be happy with your advice and your views. But do not ever tell me what I cannot do for myself, because You Are Not Me. I Am Not You. One Person Is Not Another Person. Here, let us trade shoes and figure out what it is really like.
I am full of love right now, I am shining so intensely that I can barely see past my own soul. Who wants some Love? Who wants some Shiny Love? Seriously, I am radiating energy and power so insanely that all three cats are staring at me, all purring, and I can actually sense all the trees in the neighborhood bending slowly toward my house. I have no idea what any of this means, but I do know that I am full of a powerful thing that I cannot explain in words. I will do my best to help you Shine and Feel Loved as I sit here, by myself, with my cats and my toys and my books and my medicines. I am made of stars, just like you. We are the universe exploring its own imagination.
It's All Good.


RadiantHeart

chakradragon

lotushands
brightrosefox: (Default)
One: (Seen here and there in various forms)
Failure doesn't mean you are a failure, it does mean you haven't succeeded yet.
Failure doesn't mean you have accomplished nothing, it does mean you have learned something.
Failure doesn't mean you have been a fool, it does mean you had a lot of faith.
Failure doesn't mean you have been disgraced, it does mean you were willing to try.
Failure doesn't mean you don't have it, it does mean you have to do something in a different way.
Failure doesn't mean you are inferior, it does mean you are not perfect.
Failure doesn't mean you've wasted your life, it does mean you've a reason to start afresh.
Failure doesn't mean you should give up, it does mean you should try harder.
Failure doesn't mean you'll never make it, it does mean it will take a little longer.

Two:
"Never explain -- your friends do not need it and your enemies will not believe you anyway."
brightrosefox: (Default)
One: (Seen here and there in various forms)
Failure doesn't mean you are a failure, it does mean you haven't succeeded yet.
Failure doesn't mean you have accomplished nothing, it does mean you have learned something.
Failure doesn't mean you have been a fool, it does mean you had a lot of faith.
Failure doesn't mean you have been disgraced, it does mean you were willing to try.
Failure doesn't mean you don't have it, it does mean you have to do something in a different way.
Failure doesn't mean you are inferior, it does mean you are not perfect.
Failure doesn't mean you've wasted your life, it does mean you've a reason to start afresh.
Failure doesn't mean you should give up, it does mean you should try harder.
Failure doesn't mean you'll never make it, it does mean it will take a little longer.

Two:
"Never explain -- your friends do not need it and your enemies will not believe you anyway."
brightrosefox: (Default)
One: (Seen here and there in various forms)
Failure doesn't mean you are a failure, it does mean you haven't succeeded yet.
Failure doesn't mean you have accomplished nothing, it does mean you have learned something.
Failure doesn't mean you have been a fool, it does mean you had a lot of faith.
Failure doesn't mean you have been disgraced, it does mean you were willing to try.
Failure doesn't mean you don't have it, it does mean you have to do something in a different way.
Failure doesn't mean you are inferior, it does mean you are not perfect.
Failure doesn't mean you've wasted your life, it does mean you've a reason to start afresh.
Failure doesn't mean you should give up, it does mean you should try harder.
Failure doesn't mean you'll never make it, it does mean it will take a little longer.

Two:
"Never explain -- your friends do not need it and your enemies will not believe you anyway."

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