Art Activism by Marie D.L.

My mom bought me a pair of prescription migraine glasses from Zenni Optical! The rose colored lenses have a special filter that is supposed to help light induced migraines.

Light is one of my triggers. Now that I am working again, I am a little scared of getting a migraine while at work…so I am thankful for having a mom that thinks of ways to help ease my anxieties 🖤

Have you ever heard of migraine glasses? Would you try them?

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ID: Marie, a pale skinned woman with long dark and blonde hair wearing pink tinted glasses laying down looking upwards towards the camera.

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It’s , so allow me to re-introduce myself—hi, my name is Marie, and I am a Disabled person 🖤

I was born disabled with a rare genetic disease called Multiple Hereditary Exostoses. I don’t have just one rare diagnosis, I have quite a few and many other diagnoses including Hypermobile Ehlers-Danlos Syndrome, Hemiplegic Migraine, Myalgic Encephalomyelitis, arthritis, POTS, IBS, PFD, Bipolar 2, and PTSD just to name a few.

I liked to think I never let my disability stop me, until I realized how ableist that phrase was. I was always capable of adapting, but what wasn’t capable of adapting to me was the Ableist Society.

I spent almost 8 years in Broadcast News as a television director in market 68, but after experiencing disability discrimination that rocked my world I had to adapt once again. I turned to my art and social media and tried to make that a career—it was EXHAUSTING, let me tell ya.

Now, I am an educator, and I couldn’t be happier to be a disabled soul on the front line making the future better for other disabled souls.

Today is a great day to support disabled creators! Head to my website to purchase some art 🖤

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ACCESSIBILITY: a collage has a picture of Marie Dagenais-Lewis sitting in the center; she is a gothic girl with long black and purple hair wearing metallic black lipstick. Pictures of her x-rays surround her, each one littered with bone tumors that are circled with neon purple. 27 tumors are circled.

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Today marks SIX YEARS of sobriety for me and my husband 🖤 pretty proud!

‘Tis the season to end ableism ☠️

You can grab this design on a tee for only $12.50!

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ID: a hand drawn skull with reindeer antlers on a black background has red and green string lights wrapped around the antlers and a red glow emitting from behind. The words “‘tis the season to end ableism” arches around the drawing.

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Jsyk, shirts are only 12.50 right now in my Threadless store 🖤

I’m doing so much better this year than I was this time last year.

Trust me, if you can, LEAVE TOXIC ENVIRONMENTS THAT NO LONGER SERVE YOU.

I was so stressed last year due to the environments and communities I placed myself in that I was recovering from a seizure and concussion this time last year, and really struggling with my mental health. These environments claimed to be supportive of disability and neurodivergence, but in my darkest days I didn’t feel that support. I felt the ostracism, ableism, and hypocrisy instead, and that ruined my spirit for a little while.

I’ve been working HARD on my soul once I escaped that community. My mental health is in a better place, my self care routines are easier to keep up with and my new work makes my soul soar again.

It’s hard to end toxic things that you’ve grown comfortable in. But try to grow more comfortable in the uncomfortable, and you’ll find change comes in the ways you least expect it. I promise. 🖤

I got this amazing package this week from
The Spork Witch 🖤 I am obsessed and can’t decide which is my favorite yet—Krampus Musk Lotion Candle, Oh My Gourd + S**U Brain + Pain Pain Go Away Forbidden Whipped Cream, Pain Pain Go Away Balm, or the Love Bites Lip Butter.

The consistency isn’t greasy at all and makes your skin feel super soft. I put the Pain Pain Go Away cream on my neck tumor, and so far I’ve been able to forget that it hurts 😊

THANK YOU BRAXTIN for sharing your products with the world, you are doing great things and I am so proud of you!

If you are looking for self care products, look no further—go support The Spork Witch 🖤

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ID: a pile of products from The Spork Witch sits on a black and gold witchy table cloth. A note with Marie’s name on it sits in the top left and a sticker sits off to the right.

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Today I took a nap and made kabobs for dinner tonight 🖤 what did you do?

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ID: a picture of freshly made shishkabobs with chicken, onions and tomatoes on a bed of rice drizzled with creamy shawarma sauce

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As you begin your holiday shopping, please think of disabled artists, creators, and entrepreneurs. So many of us have merchandise that would make the perfect gift, and your support LITERALLY helps us survive.

I have *a lot* of products available: stickers, prints, spell jar jewelry, coloring books, macrame keychains (bat shaped ones too!), plant holders, and hanging shelves. I also have two pairs of very special lucky charm earrings, hand made on Friday the 13th, just waiting to go to their new home!

I am just one of many, many disabled creatives! I am SURE between all of us, you can get a lot of your holiday shopping done and feel great about it.

Let’s make it easy for shoppers…please TAG DISABLED ARTISTS & ENTREPRENEURS IN THE COMMENTS OF THIS POST! 🖤

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Image Description: a hand drawn illustration shows a green snail dressed up as Santa Claus; it had a white beard taped to its face, replaced its shell with a bag overfilled with glittering gifts, and is wearing two Santa hats, one on each eye. The words “SUPPORT DISABLED ARTISTS THIS HOLIDAY SEASON” circle around the Santa Snail.

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🎉 Facebook recognized me as a top rising creator this week!

Sure, once I gave up on my insights I get recognized as a top rising creator—social media is truly exhausting 🙅🏻‍♀️ But yay for this week!

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ID: a yellow and pink gradient with a rising Sun in the center.

Happy National Author Day! Did you know I have three coloring books available on Amazon?

My newest one, I Am: a Coloring Book for the Soul, features 33 hand drawn patterns accompanied by 33 powerful I Am Affirmations perfect for the soul 🖤 I also have my Chronically Spooky series, which puts a spooky twist on disabled pride!

Give the gift that supports a disabled artist, get your copy on Amazon today!

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IMAGE DESCRIPTION: Marie, a pale skinned woman with long black wavy hair, holding up a copy of “I Am: A Coloring Book for The Soul”. It is rainbow cover with colorful patterns.

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“The Bloody End of April” by Myranda Gereau

CW: Blood, unalivement

April 30th, 2021 started out like a simple day. It was supposed to by a simple day of taking in a culture as I was feeling slightly sick. The day was a beautiful sunny 60 degree Wisconsin day that promised summer would be here soon on the spring wind. I was singing and laughing, enjoying one of the good few mental health days as I was under an extreme amount of stress due to a personal situation. Coming out of the hospital after dropping off my sample, I got in my vehicle ready to head home when I felt like I needed suction in my trach tube.

That’s when the nightmare began.

My nurse, Shari, started suctioning me and I knew immediately something was very wrong. My world tilted and I looked to see my suction tubing filled with bright red blood. My nurse started asking me if I was ok, even though she had already planned on driving quickly around the hospital to the ER. She let me out and I looked at her face, knowing I was turning colors as I felt my lungs filling.

I rode my wheelchair into the ER screaming as best I could. “I need help! I need help NOW!”

A nurse from the station quickly got me in a room as Shari followed behind me, ready to help. The staff kept suctioning the never-ending blood that was coming from my lungs while Shari was calling my mom to come to the hospital and explaining the situation. I was put on 15 liters of oxygen and could feel the blood going down my chest, staining my green shirt. Looking at my mom and my little sister who was 18 at the time, at first they wouldn’t let her come back but the situation allowed her to overrule the COVID protocol, I thought, "was this it? Is this how I’m going to die? I have so much to do yet." Before my sister came back I had the nurses cover me as much as possible because she almost faints at the sight of blood.

I had Shari cuff my trach so I could get all of the air I needed but this came with the cost of losing my voice. I was now mute, my main source of advocacy taken from me temporary until more than a month after that day. I relied on Shari or my sister to be my voice as they could read my lips the best. The bleeding finally seemed under control when the ER doctor came in saying they were going to send me home on 15 liters of oxygen. I mouthed, "F**k no! They need to call my main hospital with my doctor because I needed a bronchoscopy and to be on antibiotics." He looked at me trying to talk me out of it but in the end he called the hospital, then sheepishly came back saying the team at my hospital wanted me by them to do a bronchoscopy and antibiotics. I believe I mouthed "no s**t Sherlock" but that was not communicated to him.

I felt the blood loss hit me as I started to zone out, repeating in my head "keep breathing, just keep working lungs." They prepared me for transport, large needles poked my skin several times trying to find a vein but I didn’t show any expression. If it wasn’t for the monitors or the slight shake or nod of my head to answer questions, people may have mistaken me for being dead. After contemplating a blood infusion and a flight for life to my hospital, my positioning wouldn’t let me be airlifted and I didn’t need the infusion, barely.

When I got to my hospital's ER, I was swamped with people and neither Shari nor my mom was in sight. They communicated with me the best they could and actually did quite well. I remember them telling me they had to cut off my clothes and thinking "of course I had to wear my cute bra today," as if that was the least of my worries. Shari came between the bronchoscopy and the CT scan that showed my lungs were so inflamed that that was the cause of the blood. She was able to fill them in on my medical history and get me up to the room before she had to leave.

The next 2 weeks in the hospital were a mix of pain, medications, and fear.

The pain was due to the hospital staff not understanding I couldn’t be moved like a normal person. My hips and legs hurt from being pried open or not stabilized correctly. There was one time they rolled me into the side of the bed, tearing up the side of my arm. This led to the medication, Fentanyl. It took away the pain but also my coherency and this scared me so much. I couldn’t communicate unless someone cared to look at me. On more than one occasion, water from the ventilator aspirated into my lungs which were already barely functioning, or the nurses forgot to give me my call light that left me with nothing. My mom or Shari would come in to see me in extreme pain or crying from fear.

I was discharged on May 14th on 5 liters of oxygen. I weaned myself off of oxygen within a month, and was able to talk again, but I was bedridden for weeks due to pain and still am struggling with it. When I first got home I could not be left alone because of PTSD. I would need to constantly be told I’m ok or I'd have panic attacks--I call them PTSD attacks--about the bleeding starting or had the phantom feeling of it happening again.

I still have them occasionally but it’s few and far between.

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About the Author…”I'm Myranda, a 28-year-old artist who happens to be disabled and is still growing into her own! I have Ullrich MD and use a wheelchair for mobility and a trach and vent to breathe. I do all my art with a mouse and a program called Artrage. Drawing is a way for me to be free and get my feelings out because no matter how dark or gruesome my feelings get, the canvas doesn't judge. It has cried, laughed, screamed, rejoiced, and everything in between with me, the canvas has been through it all with me. I decided to share my deepest drawing about 3 years ago and was met with positive energy. People were able to relate in their own ways to my darker art that told a story and that's why I post everything now. So no matter who you are, maybe you can see yourself in my work and know you are not alone!”

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Image descriptions on each individual picture’s caption

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THE BLUE CARRIAGE by Lior Smith

CW: Unalivement, diagnosis searching

I wake up on a train. I feel awful. I can’t wait to get off. It’s dim, and the lights flicker with an annoying buzzy sound.

The doors open but I find myself unable to step out. It’s confusing, but maybe I just need a little more rest until I can get off. So I wait for the next stop, and I try again, but again I find I can’t get out. I ask a conductor what’s happening, but she says to just stay put and eventually I’ll be able to go out.

Time goes by, and I’m getting frustrated. These are terrible conditions to sleep in. I can’t work. I can’t even breathe properly here. Why is the train designed like this? I see another conductor, and this one tells me that if I haven’t been able to get out of this carriage, I might have to switch to another carriage where the conditions are a bit different. She tells me where to go, but I feel dubious that just getting on this carriage is going to help me get off the train – the inability to get off is so strong, that I don’t think those other conditions are going to do much. Still, I haven’t been stuck on a train before like this, so it makes sense to trust the conductor.

So, I get on this other carriage she pointed to, and there’s free mints that come with all the seats. I suck on the mints just as I’ve been told to. I wait. I rest. I see a stop coming up… and I throw myself off the train.

I keep my eyes squeezed shut and focus my mind on work. But the sound of the flickering lights is still there… so loud, louder louder, until I can’t ignore it any more. I can’t work like this. I really believed I’d got off the train for a moment there. But now it’s even worse. I’m still taking the mints, and they did help me enough to throw myself out the train, so it is worth taking them. I try to get off the train when it stops, but again, I can’t simply step out.

Occasionally I try throwing myself out the train again, with a little less force, but it ends up making me more stuck to the seat later. I try to work with the overwhelming noise. It’s what I’m meant to do, isn’t it? I kid myself that the noise isn’t happening. I ignore it. That can briefly help me work better. But when I look up, I’m still very obviously on this train.

Finding my carriage
I feel so stuck. I rummage through my pockets. I find a train ticket that I don’t remember getting. It’s got a box for the carriage and seat number, but they’re blank. It’s for a different section of the train to where I currently am.

I see a conductor. I tell her what’s going on, and she’s sympathetic. I tell her about this blank ticket, knowing that she might be able to tell me where I’m meant to go.

If I know what carriage I’m meant to be on, maybe I’ll be able to get off more easily. Maybe they’ll have the right kind of mints that will help me enough to get off. The conductor agrees. She says that we’ll figure it out together. I see her a few times, and we try and figure it out. I ask if maybe I’m meant to be on a blue carriage, and she says maybe, but let’s just do some more checks to make sure. It is quite serious to go into that deeper section of the train.

The next time I go to see her, it’s a different conductor – she’s not around. I ask him which carriage I’m meant to be in, based on the last conductor’s notes on me. He’s very grumpy, and seems angry at me. He stamps my ticket blue: the blue of a school exercise book with a thin layer of dust over it.

I cry. I had known for some time that it was going to happen, but I thought it would be the kind conductor stamping my ticket, and I thought she’d tell me a bit about what to expect on that carriage. This man conductor told me that there’s nothing in the carriage to help. He didn’t want to stamp my card. He said, what’s the point? Since there’s nothing helpful there, why go there at all?

Many people say, once you’re in that blue carriage, that’s it. There’s no getting out.

But I wanted to know which carriage I belonged in. Even if I’d never get out. I wasn’t getting out anyway. At least if I knew which carriage I ought to be in, maybe I had a chance of getting out. And even if I never got out, at least I would be around people who understood what I was going through. We’d all be in the carriage together, figuring it out together.

What it’s like in the blue carriage
I’m interested in people, and I love learning, so the first thing I do is start asking around about meetings and what to read. Wendy is the first character I meet. She’s been in here a very, very long time. She knows a lot and is helpful, but her attitude is so bitter, that I swear to myself that I will not let this carriage embitter me, however long I am here.

There are different groups here. There are the activists, who try to get the attention of people outside; the experimenters, who try specific means to escape at the same time as each other and report back findings; and ones who go round giving everyone hugs, or giving out uplifting flyers about self care with cute illustrations. There are ones who are too stuck to their seats to do any of that. There are ones who are only able to despair.

I read the posters on the train, but the information is so basic that it doesn’t help much. What’s far more interesting is what’s scratched on the walls by all the passengers who have been here. I start reading. Some helpful people point at bits for me to read. I write in my notebook to try and make sense of it – I’m trying to find themes in what seems to help people get closer to getting off the train.

Sometimes people start talking at me about what’s helped them – they are keen to pass on the good stuff. I have mixed feelings about them just talking at me, but I do pay attention to see if themes come up.

There are notes on the wall written by people who have managed to get off, but I don’t always know if they really have gotten off, or if they’ve moved to a front section of the train, or even if they just have their eyes squeezed shut like I tried. When I do stumble across notes written by someone who has verifiably got off, it’s precious. But they seem hard to find.

There’s a lot of dud notes. Some escape routes will only work for a certain kind of person, and you won’t know if it works for you until you try. Occasionally someone smartly dressed passes through with a snack trolley at suspiciously high prices. Most people tell each other ‘don’t buy from that cart, I tried it and it did absolutely nothing for me’. But there’s always someone desperate enough who will willingly lose some cash to try and get out of here.

I met this guy recently who says that he’s almost off this carriage. I believe him. He’s made a lot of progress towards the door. He’s been reading what’s on the walls, just like I have. Sometimes he squeezes his eyes shut and says he’s not really here. Sometimes he says that he’s not on this train at all, though I can see him right in front of me, reading the walls just like I am, frustrated at the flickering buzzy lights just like me. I get that, too. It’s his way of coping with being here. He believes it’s helping him get out quicker. And who knows, maybe it does help. He’s closer to getting out than I am.

The other coloured carriages Everyone knows about the pink carriages, and the red ones too. A lot of people never make it off those carriages. Everyone’s afraid that they’ll end up there.

Occasionally I meet people in this blue carriage who have been in a pink carriage and lived to tell the tale. It sounds pretty awful. But they say that at least when they were in the pink carriage, more people tried to help them get off it. Some of them even say that they find the blue carriage to be much more unpleasant. Though the drinks in the pink carriage are just the worst.

It’s normal for me to meet people in the blue carriage who have multiple tickets. They gather in clusters. A lot of people have tickets that are shades of grey.

When I first got my ticket stamped blue, I told someone about it who fancied me. I didn’t fancy him back, so he told me that the shade of blue I was talking about didn’t really exist. It was actually grey. I argued with him. I could see plainly that my ticket was blue. But he made me doubt my vision. I looked really closely at the shade of blue. Maybe it was just a very blue shade of grey?

I stared at my ticket. Are we all delusional, collectively? Is this actually a grey carriage? Is that why we can’t get off? But I talked to some other people on the carriage about it, and they told me how so many people have said that to them. It’s them just being unkind. We know ourselves enough to know when we’re in the right place. We know the difference between grey and blue. They don’t get to tell us where we belong. And it’s so arrogant of them to think that it’s their place to tell us our experience.

There are always several people around who keep doubting what shade of blue their ticket is. They know they’re in the right area of the train – but they might belong in the next blue carriage along. Generally it depends on how helpful the conductors have been, about whether they find out for certain. It can take such a very long time moving between carriages. Some people have been in entirely the wrong carriage for a substantial amount of time, and end up here – relieved to finally be in the right place. Others who have been here for ages see a conductor and find out that actually they were meant to be in a beige carriage all along.

The train just shuddered, and there was a huge, distant crowd wailing. ‘That’s the pink carriages calling for help.’ There’s so many of them on it, and they organise so well, that when they bang on the walls of the carriage together to be let out, everyone hears them. It’s impressive. They are getting help, and it is working. The people out there are helping more and more people escape. It gives me hope. Maybe once they’ve figured out a way to get everyone off the pink carriage as soon as they set foot in it, maybe they will get round to helping us in the rest of the carriages off. I don’t blame them for prioritising the carriages where survival is cut very short.

Still, people die on this carriage too.

Read the rest of the story at https://adventuresofawellbeingsuperheropartii.wordpress.com/2023/02/13/the-blue-carriage/

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ABOUT THE AUTHOR: Lior has had ME/CFS since 2016. This is her first short story with an extended metaphor about her illness experience. She is a recovering perfectionist, sings one song a day with her ukulele, and is into art and zine swaps. She is Jewish, pansexual, mixed ethnicity, neurodivergent, disabled, and an intersectional feminist. She lives in London, UK, with 10 plants, 300 books, and 2 teddies

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ACCESSIBILITY: a screen shot of Lior’s blog submission for Horror Stories From The Ableist Society. It is black text on a white background with the header “adventures of a well-being superhero: part II Lior’s journey through ME/CFS. The Blue Carriage posted on 13th Feb 2023” along with the first 4 paragraphs from the story, which is listed above in the caption. To the right in the bottom corner is an image of Lior, a pale skinned lady in her 30s with long dark curly hair and strong eyebrows with a gentle smile wearing a big white and blue floral bow in her hair, a slate blue patterned cardigan, a dark too, 2 blue necklaces and earrings. A black bar at the bottom says “Horror Stories From The Ableist Society .a.r.e.advoc8”.

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😂😭 Seen on The Fibromyalgia Pain Chronicles

ID: A spirit Halloween meme of a costume which says “Doctor that believes in you” alongside a stock picture of a doctor.

😂🎃😂🎃😂

Here’s your reminder—DON’T BE ABLEIST 🎃

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ID: a hand drawn illustration of a black heart shaped vintage cake with slimey green frosting and lettering which says “don’t be ableist .a.r.e.advoc8”. Tiny orange glowing jack o lantern cherries accent the green frosting.

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In this world, being kind is the best thing to be. Especially now’a’days, we need as much kindness as we can get.

BREW KINDNESS ©MDL’23

You can now snag this new design from my store 🖤

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ID: a hand drawn illustration of a black cauldron with a bubbling slimey green liquid dripping out; a swirl of magic wafts out of the cauldron. The words “BREW KINDNESS” is in a dripping green font arched under the cauldron. A Smokey green glow accents the background.

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Such an important read

ALT TEXT: a pic of a kid with their face censored petting a service dog

The Plight of the "Easy Kid," or Why People Pleasers Go Undiagnosed
(With Autism and ADHD)
_____________________________

I have one kid, Eleanor, who is eager to please.

She listens to instructions. She gets to work quickly, and works independently.

Everyone enjoys having her around. She helps them get things done. They often rely on her help.
_____________________

And I have a second kiddo, Charlie, who struggles to complete the tasks I assign him.

In fact, getting him to follow directions can feel like pulling teeth.

His executive dysfunction runs high and so does his desire to be in control of his actions.

Adults often find his inability to work on his own, to be frustrating.
__________________________
*ahem*

Let me try that, again....
________________________

I have a second kiddo, Charlie, whose sense of self-worth, is independent of his ability to complete the tasks I assign him.

He benefits from visual cues and schedules to help him follow step by step instructions.

He works best with social support, such as body doubling, to help anchor him to his tasks.

He enjoys pleasing people, but not so much that the desire to please others will motivate him to do things he finds really unpleasant. He makes his sensory boundaries clear in order to protect himself from sensory overload

That said, he does enjoy a challenge. He will persist at puzzles, long after his peers have given up, and enjoys teaching others his techniques.
_____________________________

Do you see how I have framed my son, Charlie, in two, entirely different ways?

The first way, is ableist.

It focuses on what he lacks and what he struggles with. It makes it clear, that other people's opinions are what matters.

The second way is Neuroaffirming. It recognizes that Charlie CAN succeed, when his needs are met.

It makes it clear that his lack of people pleasing has BENEFIT and that he adds social value to groups, by sharing his insights.
___________________________

Now, I could go on and on about the difference, but I am sure you get the idea.

How we speak about our children and in front of our children, MATTERS.... and it can make or break their confidence, self-image, and willingness to take risks.

So, presuming you understand that...I want to go back to my first child, Eleanor.
_____________________________

Eleanor is a people pleaser. And of course, adults enjoy this fact!

It is an asset for adults, to have a child around, who will always clean up when told,
always assist when needed,
and who never has to be asked twice, to follow the itinerary.

She makes their job easier.

But....
Often, she does this at her own expense.
____________________________

Eleanor is skilled at masking her sensory discomfort.

She will push herself to do things that she intensely dislikes, saving her collapse until later, when she reaches her safe space

Eleanor knows to double and triple check each step of an activity, in order to account for her executive dysfunction.

Eleanor is hyper aware of the reactions of people around her. She wants to avoid negative responses, because when others get frustrated, she feels rejected.

Her sense of worth is often conditional on how others feel about her/her work. Eleanor struggles to realize that perfection is not necessary and that simple effort is worth a LOT.
_____________________________

Eleanor is the kind of kid who goes UNdiagnosed.

Her neurodivergencies like Autism and ADHD, arent flagged,
because adults aren't having to work hard at accommodating her.

Eleanor is having to accommodate OTHERS,
and she experiences burnout and collapse, in private.

Her people pleasing tendencies, are dangerous, because they make her vulnerable to maltreatment.

And I must constantly remind myself to:

*actively encourage her to ask for help

*reward her for voicing discomfort

*build in breaks for activities, that she will not express her need for

*ask for accommodations up front, on her behalf, so she can depend on them
_____________________________

So, which of these kids is HIGHLY Autistic?

Which needs an Individual Education Plan?

Which is mega ADHD?

Which needs supervision on play dates?

Which do I worry about at night?

Which is AT RISK for anxiety, mental illness, and neglect?
___________________________________

The answer is: BOTH of them.

Don't make the mistake of thinking the "easy child" doesn't need your support.

They DO.

And YOU need to be vigilant and supportive of their needs,

EVEN when they cannot voice them...

Even when they are willing to push those needs aside....

Even when they CAN survive without having their needs met.
__________________________________

Because there is ALWAYS a consequence to unmet needs....

and if your child isn't paying it now, they WILL pay it in their 20's and 30's, when burnout and despair strike.

So, meet all the needs you can, NOW,
and make SPACE to discuss and problem solve the needs you can't meet....
The needs that require
work arounds,
professional advice,
environmental changes,
outsourcing,
practice,
or new tools.
______________________

Be willing to admit to seek advice.

To try new things.

To advocate.

And to recognize that you might need to learn some new things so you can MODEL them, for your kids.

And most of all, pay attention to that EASY Kid. If you don't, nobody else will.