Spoonie Terms 101

Becoming  a member of a spoonie, or chronic illness community , can be overwhelming with all the jargon and lingo. So I’ve created a document to help you navigate your way through it. There are helpful links, etc. This was originally written for the Spoonies Without Judgment  Facebook group, and feel free to join if you’re looking for a place to call home. I help admin there and we don’t bite. Well, not too hard. Hee.

Terms:

Ableism: Stella Young said it best in her TedTalk. Basically, if it’s not something you would say to someone who is currently able bodied, don’t say it to someone with a disability. This blog post of mine sums up the problems with ableism and why it’s currently a problem. Not to toot my own horn, but I think it’s pretty stinking good!

Ablesplain: I’m just going to pull out a quote from this link because it says it far better than I could:

“In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.”

Aspie/Autie: Slang for an autistic person. Some people like these terms, some people don’t. Choose to use them if you want, choose not to use them if you want.

Brain fog: “Brain fog”, also know as “fibro fog”, “pain fog” or “med fog” is the feeling when pain or meds make it hard to think. It kind of feels like you’re swimming through pea soup or mashed potatoes. You forget things easy, mix up terms, say the wrong thing, etc.

Bump: Boosting a post up if it has no replies or not a definitive answer. This helps it to come back up.

CW/TW: Content warning or trigger warning. A trigger warning is something that could case acute distress such as types of abuse. A content warning is something that may trigger a phobia and is considered more of a “heads up” than an actual trigger.

Crip: Slang from cripple. Many have decided to reclaim it as their own word and to use it for themselves. The choice is yours to use it or not. Do not use it as an insult – such as “you’re such a crip!” in a cruel way. However, it is often used in a tongue-in-cheek way such as “crip perks”, etc.

Flare: A flare is an acute acting up of your chronic illness. So, if you see someone saying “I am having a fibro flare” today, it means their fibro is currently acting up.

Gimp: See “crip”. Just another word for the same thing.

Image description: An image description is telling someone what’s going on in the picture. This is used for low vision/blind people, screen readers, low bandwidth, etc. If you aren’t sure how to write one, read this. It’s also perfectly okay to ask for help!

Muggle: Muggle is just a term we use for non-spoonies. It’s usually used in a tongue-in-cheek way or in jest.

muggle sick: “normal people sick”. So, if you have a cold, you’re “muggle sick”.

Signal boost: A signal boost is posting something in a group or on your timeline that needs attention. For example, a couple years ago there was a recall of epi-pens (something used for people who have severe allergies). People would post them with the words “signal boost”, meaning it’s important and something should read and share, even if it doesn’t affect them directly. This is mostly done for allergy warnings, med or food recalls, or things that could threaten a life.

Spoon debt: Reaching into your spare “spoons”, or energy, to do something but it means you won’t have said energy or spoons tomorrow. It can be near impossible to catch back up.

Spoonie: Taken from the spoon theory A spoonie is merely someone who suffers from chronic illness.
Painsomina: Pain + insomnia. AKA a living hell. You can’t sleep because of pain, even though you’re SO freaking tired.

I am not a tragedy or an inspiration

I am not a tragedy. There is nothing tragic about my life. I am disabled. I am autistic. And you know what? It’s all a part of who I am. It isn’t tragic. It isn’t a horrible fate. And no one is my voice. No one but me. Even when I lose my verbal speech. The only time I do not have a voice is when you try to silence it. The only time I am voiceless is when you refuse to listen to my atypical speech.

I am not a tragedy. I don’t suffer from autism. I am not a person with autism. I am an autistic female. Autism runs through my veins. It’s very much a vital part of my personality. It is as crucial to my personality as the fact I’m a sarcastic asshole and my affinity for puns. It’s just not something I can easily change. And to be frank, I wouldn’t change it. Of course there are things I hate about autism. It isn’t all sunshine and rainbows. But at the same time, to love myself and to hate my autism – like so many parents claim about their children – would be to hate the very core of my being.

I am not a tragedy. My disabilities are not tragic. Sometimes they suck – getting sick so easy sucks. Having disabling migraines suck. Being in pain all the time sucks. But you know what? Some very good, very not tragic things have happened as a result. I have an amazing circle of friends who would move hell and high water for me. I have friends who have done little things for me, just to make me smile or to hear my laugh. I’ve made friendships I wouldn’t have had. Is the fact I’m a college drop out tragic? Absolutely not. I am simply making the best of my situation. There is nothing tragic about it. The only tragedy is people who try to silence me, because they think I should be a good little crip.

I am also not your inspiration. I do not exist to inspire. I do not exist to teach you. I do not exist to make your life better. There’s nothing inspiring about me doing my famous hobble-hop on days when I don’t want to use my crutches or walker. There’s nothing special about me being able to balance crutches and a cup of steaming hot coffee (well, okay, it is kind of impressive I don’t spill it down my shirt, but that’s because I’m an absolute klutz not because I’m a crip).

I am not your inspiration. I am not inspiring because I simply go about my daily life. To call me, to call your child, to call your sibling an inspiration just because we’re disabled and for going around our days is ableism, and turning us into inspiration porn. Don’t do the thing. Don’t demean us. Don’t objectify us. Don’t tell us that we exist to inspire, that we exist to teach. We don’t. We exist to life our lives.

I am not your inspiration. I am just like you in many ways. I love Firefly and Doctor Who, the Avengers and Pirates of the Caribbean. I’m snarky, sarcastic, cynical, bubbly, and happy go lucky. I am a mix of Luna Lovegood from Harry Potter, Kayle from Firefly, River Tam from Firefly, and Silica from Sword Art Online. I just have disabilities.

Do not turn me into a tragedy.
Do not turn me into an inspiration.
For I am none of those.

I’m simply Nora.

Allodynia Sucks

I have AllodyniaIt sucks. And by sucks, I mean it really and truly, totally, 100% sucks. You know the feeling when you have a still healing sunburn? You know that feeling when the slightest touch makes you recoil in pain? Yah, that. You know the relief you get once the burn has faded? Yeah, I don’t get that.

I haven’t had it my whole life though I’ve always been hypersensitive to touch. I’ve never liked being touched, never liked hugs. As long as everyone touches my clothing and not my skin, it’s fine. But living with it day in and day out is exhausting.

Some people only experience it when they have a migraine. Others, like me, have it 24/7. It restricts my clothing choices – some of them are literally painful to wear if they aren’t made of the right fabric. It means I have to use a blanket year round to sleep under – I absolutely require the soft touch against my skin because the feel of the room air on my skin is painful.

Just imagine.

Imagine enjoying the feeling of a breeze, but at the same time it’s painful because ANY type of touch hurts.
Imagine craving physical touch and affection, but not being able to enjoy it, because it hurts. Imagine not being able to enjoy cuddles… because they hurt.

The worst part is for me, there is no treatment. Sure, they can take the edge off.

But I’m still going to live in pain.

Simply by being touched.

So you have an autistic child

So your child was recently diagnosed as autistic. Before you read my opinion and advice, I highly suggest reading this post by Jess Wilson of Diary of a Mom and K’s beautiful Try On My Shoes post.

I understand you may be scared. That you may wonder what the future of your child holds. And that’s okay. All parents are – regardless of what kind of diagnosis your child has. It’s all normal and it’s all a matter of perspective. It’s all a matter of accepting your child and loving your child as they are. This is why I came up with this list of 4 Tips for the Parent of an Autistic Child.

 

1. No verbal speech does not mean they have no voice

Please, I plead with you, never say you are your child’s only voice. That they do not have a voice. Your child has a voice and it rings loud and clear. It’s in their eyes. Their smile. Their body language. In the way they sway to the music or the way they play with their toys. Take the time to listen. Take the time to learn how your child is communicating with you. They are giving you a precious gift – their love, their trust, their voice. Even if it’s not traditional… listen.

2. If you wouldn’t do it to a neurotypical child, don’t do it to them.

So many autism mom bloggers post intimate details of their child’s life. Details no one needs to know and would certainly never be published about a NT child. They are violating their child’s trust and privacy. Just because they will never be able to read it doesn’t mean they wouldn’t want it out there. Just  because they don’t understand or even have a clue doesn’t mean it should be posted. Now, I understand that parents want their voices heard. But ask yourself two questions: First, if I were my child and this were about me, would I want this posted? Second, who is this post for? Is it to get attention for myself? Is it  to get help and advice for my child? Is it so people thank ME for being open about my child? Or is it to share part of my child’s story and their beauty? After you answer these questions, then use that to frame your blog post.

3. Respect the stim

Ah, stimming. Stimming is one of those BIG THINGS about autistic children, and adults too! People hate it. Stimming is critical for us – it grounds us. It keeps us calm. It gives us enjoyment. Everyone stims for different reasons. Things like “quiet hands” don’t do a whole lot of good. Encourage the stim. It keeps us calm in a wild, scary world. It is one thing that is constant. I am not hurting you by playing with my zipper bracelet. Nothing wrong with fiddling with a stuffed animal. Love us. Accept us. And allow us to stim.

4. Don’t use their disabilities or quirks for a cheap laugh

So many times, I’ve seen sensory issues or taste/texture aversions used for a laugh. It isn’t funny if all your child wants to eat is one food. If your child requires certain textures of clothes. They aren’t doing it to be difficult. They aren’t trying to make your life harder. It’s just a part of who they are. It is mean to make fun of something that cannot be controlled. If your child is happy eating oatmeal for every meal, then your child is happy eating oatmeal for every meal. No need to turn it into a martyr-fest and no need to ridicule them for it.

——-

So maybe your child was newly diagnosed. Maybe you’ve known for awhile. But now you know how to teach your child with respect.

Why I Am Not Your Inspiration

Left and right, I see disabled people like me being called an inspiration. I see us put on a pedestal, for simply going about our day to day lives. I see us treated like we’re doing something amazing, for merely living! Gasp! How dare we actually, you know, do normal things!

I don’t want to be an inspiration.

Let me rephrase that.

If you’re inspired by me, be inspired because I’m compassionate, loyal, funny as hell, and an advocate.

Don’t be inspired because I’m disabled.

I am more than my disability. 

Behind the crutches, behind the walker, is a person just like you. I do the same things you do. So why am I an inspiration because of it?

There is nothing inspiring about living with a disability. To think as such as demeaning and belittling to us. To act as such is to treat us like we are less worthy, simply because we’re disabled.

We don’t exist to inspire you.

We exist to live our lives. We deserve dignity and respect.

Not bullshit, wishy-washy inspiration.

The Delicate Balance

Something many people don’t realize about chronic illness and/or disability is that it’s a full time job in and of itself. There is so much EFFORT you have to put into it and it’s about things you really would never think of until you’ve lived it. It’s a delicate balance – a terrifying walk across a tightrope trying to get everything to be just so.

For example, doctor’s appointments. Don’t dress too nicely, or you’re not that sick. Don’t dress too grubbily, or you’re merely depressed. Find the balance between comfortable and too nice, which is hard. Don’t put too much effort into it, but don’t be completely lazy. Don’t be too honest and open about your symptoms, or you’re drug and attention seeking. And don’t try to brush it off, or it isn’t that big a deal.

Choose what you’re doing today. Going to send out some emails? Make some phone calls? Do some paperwork? Clean the apartment? Visit friends? Cook supper? Chances are, you can’t do it all. You have to decide what needs to be done, and what can wait. And even if it all needs to be done, it often just isn’t possible.

Use your mobility aid and get stares, comments, and judgement. Don’t use your mobility aid and get stares, comments, and judgement. Take your medicine in public and hear the whispers and comments about the druggie. Don’t take your medicine in public and get hella sick.

Go to the ER and get treated like shit. Don’t go to the ER and get sicker and sicker, but you just can’t deal with the judgement. It isn’t so cut and dry when you’re chronically ill. It isn’t so simple when your life is doctors and illness.

You sit around playing video games, watching movies, and reading. You’re lazy. You’re not really sick. You go out and spend time with people. WOW NORA, STOP PUSHING YOURSELF. YOU REALLY NEED TO TAKE CARE OF YOURSELF.

You feel bad for not Doing The Thing with your friends. You feel bad for Doing The Thing because you feel like a party pooper and an inconvenience. Do I tell them about my allergies and places I cannot eat, and look like a pain in the ass, or do I keep quiet and just eat when I get home?  Do I take care of my mental health or my physical health, which sometimes overlaps and sometimes doesn’t?

Do I take the meds that make me feel better, even though I live with horrid side effects, or do I forgo the meds because the side effects are unbearable?

And the other aspect of the job is juggling all the things. Doctors. Therapists. PCAs. Homemakers. Nurses. Some come to your apartment, some don’t. You get judged because “someone with THAT many appointments shouldn’t have this much time to spend online”. (Clearly, you haven’t been in a doctor’s waiting room. You NEED something to do). You get judged if you pull back because people get worried.

Do I try to knock out the appointments at once, or break them up? Do I get up early to get in sooner and then be out of commission for days, or do I wait months for an appointment? Do I try to balance a job with all this, or am I forced to live a life under the federal poverty line? Do I try to go to school and get an education? But that opens a whole new can of worms with disability accommodations.

How do I find the balance? What if something happens and throws it off? Then what do I do?

 

I’m tired of talking about ableism

I’m tired of talking about ableism.

I’m tired of waking up and seeing stories in the news about people treating people with disabilities like people. I’m tired of seeing it treated like the exception and not the norm, and people deserve a motherfucking cookie for being a GOOD PERSON who is SO KIND to the disabled person when we’re just living our lives. McDonalds. Meyer’s. Everywhere you turn and it’s even worse this time of year, which seems to be “take pity on your resident crip.”

I’m tired of talking about ableism.

I’m tired of people telling me I don’t look sick. I’m tired of being told I’m too young to have these problems. I’m tired of juggling my life around a PCA, homemaker, various social workers and case managers, doctors appointments, home nurse visits, and more. I’m tired of waking up in pain and going to bed in pain. I’m tired of doctors not taking me seriously.

I’m tired of talking about ableism.

I’m tired of seeing bullshit like Kylie Jenner. I’m tired of people thinking of me as an inspiration just because I’m a gimp. I’m tired of taking medications day in and day out that I need to function. I’m tired of not being capable of using a stove on my own. I’m tired of being terrified that before age 30, I will be in assisted living.

I’m tired of talking about ableism.

I’m tired of the looks. The stares. The comments, both to my faec and behind my back. I’m tired of being doubted. I’m tired of being treated as a child. I’m tired of being forced to be neurotypical – maintain eye contact when I say. Don’t do your stim. Don’t think about that thing. Don’t do that thing, don’t do these thing, we don’t like it. You’re weird. You’re not good enough. You’re too good to be disabled. You pass as normal too well. You’re so embarrassing to be seen around.

I’m tired of talking about ableism.

I’m tired of being held up on a pedestal, as some poster child for my disabilities. Of being told I’m brave for merely living my life. Of people telling me they’d kill themselves if they had my disorders. Of people telling me I should kill myself, because my life isn’t worth living. Of being judged for doing what I do. Of never being a good enough crip.

I’m tired of talking about ableism.

I’m just tired in general. I sleep too much. I don’t sleep enough. I graze all day instead of eating regularly. I don’t eat at all. I don’t eat enough. I drink too much and get bloated. I don’t drink enough and wind up in the ER. I am juggled from specialist and specialist just trying to figure out what the fresh fuck is wrong with me.

But yet…

I can’t stop talking about ableism.

Not while we wake up to some so-called inspirational story about a person with disabilities. Not while we live in a world where people think it is okay to say things to a disabled friend that they would never utter to an able bodied friend. Not while stories catch on like wildfire around social media, not even thinking about the feelings of the DISABLED person. Oh no, we are focused on how KIND and GREAT the OTHER person was.

I can’t stop talking about ableism.

Not when we live in a world where people out people without their consent about their disabilities, and then expect back pats for being so kind to the disabled person. Not when we live in a world where it’s considered AMAZING to be nice to a disabled person, when it just should be human dignity. Not when it’s considered “cute” to have OCD quirks, autistic quirks, all these little quirks when they’re NOT quirks, dammit, they’re who I am and I can’t control it and to brush them off as quirks demeans me.

I can’t stop talking about ableism.

Not when people talk around me or about me, but not to me. Not when even disability conferences and college disability services cannot get their shit straight. Not when it’s considered amazing and inspirational I got so close to graduation but had to withdraw for medical reasons. Yes, I’ve made the most of shitty situations but we ALL do.

I am so fucking tired of talking about ableism, but unless I want things to get better and to finally get a rest from talking about it, I can’t stop talking about ableism.

Facebook Filter Icons Pose Access Barrier And Make Corporate Statements

Note from Nora: One of my friends generously wrote this as a guest post for me to take some of the stress off my plate. Thank you, E.! This is a post I’ve needed to write for awhile after posting a rant on my personal wall, but hadn’t had the spoons to do so. Much love and props for E! 🙂

As the lead organizer of Disability Right Now blog, recently featured in this list of sixty top autism and disability blogs, it feels important for me to make a statement about an access barrier on Facebook many may not be aware of.  Though not diagnosed with low vision, I have eye conditions which play a role in how I use the Internet.  Lately when a political happening is taking place, Facebook has taken to encouraging the use of a filter over people’s icons, and these filters pose an access barrier to many people with vision problems as well as people who experience migraines or other types of headaches. When the rainbow flag filter was prevalent (often touted by fair weather allies who were perfectly willing to say transphobic or anti-gay things even with their rainbow flag flying), I had a puke-inducing headache for two weeks straight before I took steps to start circulating a PSA about what the filter type icons do to headache-prone and visually impaired folx.

In some cases (including mine), depth perception plays a role in the headaches. The filter tricks us into working harder to see what is underneath in order to see who the people are.  You can say something like, “Well, just look at the name and not the picture,” but if someone is used to relying on both, they may not be able to stop relying on both just because Facebook is making a corporate statement this week.  People have disability-related coping mechanisms for a reason and may not be able to turn those off.

In the disability community, many people are housebound, with the Internet being a primary mode of interacting with the outside world. Some disabled people may not see people in person regularly, or may be unable to leave their houses without help.  Some are bedbound. And while the Internet is big, Facebook has shrunken it considerably, with a great deal of activity happening on the site, especially since it became a place where people of all ages can be found.

Asking people to simply change their Internet habits may as well be the same as telling some people, “Log off and don’t talk to people, we didn’t want you here anyway.”  For some, logging off of Facebook and/or the Internet is a very isolating experience which can alter mood, anxiety level, and physical health for that day.

Even if the Facebook filter icons do not give one headaches, they do make it almost impossible to tell people apart whether you’re visually impaired or not, unless you are someone who ignores icons one hundred percent of the time.  This can ultimately confuse many people, not just disabled people.  And it happens every single time Facebook introduces a filter. Not just with this French flag filter.

So it’s an icon, and it’s on Facebook, and it’s not accessible but what is this stuff about corporate statements?  Well, top down decisions made by Facebook, such as creating a safety check, or instituting a new filter, represent the company.  If you are using a Facebook-created filter, you are saying, “I co-sign Facebook’s decision to prioritize this political issue.”

Solidarity with deceased Parisians is one thing, but remember that the Facebook filter icons have corporate backing.  They represent a large slice of the corporate US. Not just a sentiment in the country, but the corporate US..  They are also being used to drum up xenophobic, racist sentiments–namely the idea that terrorism against white people matters more than terrorism against Muslims, Arabs, and other brown and black people.  If you want to cosign all of that, that is your right, but it’s important to be aware to what you are signing onto and representing, especially to people who have a stormy relationship with the French due to current or past colonialism.

And Facebook is a US company, but it is not just used by US citizens.  Facebook is used all over the world.  When you fly a flag on Facebook, the people who are under that flag can see that. Yes, that means the people of Paris see solidarity, but it also means that BIPOC (Black, Indiginous, and People of Color) people who are on land currently or previously occupied by France also see that.  The use of the French flag is showing solidarity with white people and lack of solidarity with occupied or previously-occupied people of color.

Disability Right Now blog has been and always will be in solidarity with people of color, and in solidarity with disabled people for whom Facebook remains not just a fun distraction or even just a tool but also a lifeline.  I was asked by A Heart Made Full Metal to guest blog here and to discuss the accessibility and other political ramifications of the French flag filter.  Remember–this isn’t even just about French flags, but about what statements we want to cosign, and whether we want to endorse Facebook implementing yet more inaccessible technology.  Access concerns will come about every time Facebook introduces a new filter.  Do your disabled friends and colleagues a solid, and try not to use them.

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A difficult pill to swallow 

Recently I had my reassessment for my state waiver that pays for my in home services. It’s always a difficult time of year. In some ways, you want to fail the assessment because it means you get the help you need. In other ways, it’s disheartening to gradually with your health fall apart.

I had been assessed in 2013, and was deemed to not need further care after my back surgery. By fall of 2014, I had been accepted into the waiver program and fall of 2015, my services were even further extended. Anyone who knows me will tell you I’m fiercely independent,   stubborn enough to give a mule a run for their money, and have an irrational hatred for asking for help.

But I now have multiple providers coming to my home a week. And while part of it is a relief that I’m not juggling everything on my own and I have the help I finally need, it’s so incredibly hard to accept that age 28, I need nursing home level of care. It’s terrifying that I’m so young. So many fears play tag with each other in my head – will things get worse? Will I need actual assisted living? Will I ever improve enough to get the degree to be a hospital chaplain that I’m just one and a half semesters away from? At that, will I ever get the seminary degree I outrifht covet at this point? Above THOSE, will I ever get a job?

My renewal paperwork also stated that I don’t want to work. That’s the furthest thing from the truth. I find that it’s those that actually cannot work that desire to work the most. I would love to have a job. I would love to have a life outside of video games and Facebook and movies. It isn’t how I saw my life 10 years ago, as a senior in high school.

But I’ve come to realize these aren’t the things that define me. The fact I have a great need for care doesn’t mean there aren’t things I still can’t do for myself. The fact that I cannot work does not mean I am not a productive member of society. And the same goes for you if you’re reading this. You’re not a failure if the most productive thing you do today is get up and go to the bathroom. You’re not a burden on society if you need extensive in home care.

You’re still funny, beautiful, and enough. Some days, it is enough just to say “I woke up this morning and I made it through until evening.” Some days it is enough to say that yes, I had extensive supports today but they helped me make this day the best I could. Some days it is okay to say that wow, today sucked and was the worst day in a long time, but I made it, and that is enough.

It’s a difficult pill to swallow. It’s difficult to leave my hopes and dreams behind. But instead of leaving them behind, I’ve watched them morph into something new and something I still never dreamed of. And that’s what life is – making the most of the unknowns and going forward every day.

My invisible fight. 

 This is what my chronic illness fight looks like.


As is this.
I look happy.

I look content.

I look like your average 28 year old, albeit young for my age.

But yet.

I fight my self every day.

My body kicks its own ass.

I sometimes go days without food. People comment on how thin I get. It isn’t a big deal, you see, because thin is so wanted in this world.

But I don’t want thin

I want healthy.
I live in pain. I limp. I wince. You can’t see my pain but it’s there.
I struggle.

Everyday.
And I fight.
But I win.