Studio Hailstorm

Your Queer Disabled Faeriegodmother. www.haleybrown.org

[studiohailstorm]

Unsolicited advice to parents of Disabled kids

I woke up this morning processing a lot of medical trauma and feeling a REALLY strong impulse to share some unsolicited advice for non-disabled parents/caregivers of Disabled kiddos. I actually wrote this for twitter but couldn't figure out how to format it so I thought I'd start by sharing it here.  I have a hunch this post might rub some folks the wrong way and I'm a perfectionist who wants everyone to like me but I'm gonna try and be brave and share anyway. Hopefully this will be useful to at least one person!

You might be like, 'ok haley, but who the heck are you and why should I listen to you abt this' and that's reasonable! I am not a child psychologist. I'm an OI (type V) adult (turned 30 this year!) who's worked with children for 17 years, and I have non-disabled parents. Ok let's start with 10 points in no particular order...

1.Stop praising your Disabled kid (directly or to other people) for being "positive," especially around medical procedures or painful experiences. While it may seem harmless to you, it trains your kid to suppress their extremely valid responses to pain for other people's comfort. Your kid should get to feel however they feel about whatever medical shit they're going through. Validate whatever feelings are coming up for them instead of constantly asking them to stay positive or be brave.

Anecdote: a kiddo I was babysitting cut his finger open when we were doing a project, and he was absolutely freaking out (understandably!). After we handled it and he was feeling better, I said to him "I'm so glad you're feeling better. You were super brave.”He said "because I didn't cry... that much?" (He cried a lot). I said "No! It's still brave if you cry!! You were brave for getting through it, and for sharing how you felt about it. You were brave for crying. It was scary and it makes sense to cry when you're scared."

2. Relatedly, protect your kid from other people relentlessly praising them for their positivity. Look up the late Stella Young's (badass OIer, btw!) talk "I'm not your inspiration, thank you very much." Allow your kid the dignity of being a complex human being with lots of different feelings.

3. I see a lot of social media posts in this realm, where parents post pictures of their Disabled kid in the hospital goin thru shit, with an inspiring caption. I get that this might help *you* process your feelings about that, but ask yourself how would it feel to be in your kid's position. How would it feel if your body was photographed at its most vulnerable, and your trauma was posted on social media for all to comment on?Having a kid going through medical procedures is traumatic for their grown-ups too, and sharing is probably cathartic for you: try sharing with a private text thread of close friends and family, instead of... literally everyone.

4. You, grown-up, are going through the ongoing traumatizing experience of having to fight for your kid in the medical realm and coordinate their care. It's a lot. Your feelings are valid too. AND…I truly believe that it will serve both yours and your kid's well-being for you to process that shit in therapy, if you have access to that. It should be a top priority.

5. Do you have Disabled adults in your life? Do you have Disabled friends? Do you follow Disabled activists and organizers on social media? Do you (and your kids) watch shows and movies with Disabled characters (played by Disabled actors?), read books by Disabled authors? If so (amazing), do the Disabled people in your life span across other intersections of identity -- are you in relationship with BIPOC, queer, poor Disabled folks, for example? Do you recognize that Disability intersects with other facets of identity in complex ways? Do the advocacy (/charity) groups and organizations you follow and participate in have Disabled leadership? If no, ask why not. Also, seek out advocacy groups with Disabled leadership.

6. Some non-disabled grown-ups of Disabled kiddos do their best to seek out a Disabled 'mentor' for their kid. Which is amazing and super well-intentioned. But imho if *you* don't model that *you* cherish and value Disabled adults in *your* life, that mentorship is likely to fall flat once your kid starts to internalize the ableism that the culture is constantly throwing at them.

7. Examine and work to uproot your own Ableism. (We all have it). Google "Disability Justice."

8. Recognize that your kid might be experiencing physical pain even if they aren't naming that. I think a lot of my tantrums and my resistance to bedtime (which are also just normal for all kids) involved the additional layer of physical pain / not wanting to be alone with pain.

9. Fiercely resist body-shaming in *all* forms, and start with yourself. Model what it is like to heal your own body-shame and develop a respectful and loving relationship with your own body. Model that all bodies are different, all bodies have needs, all bodies are worthy.

10. Relatedly, help your kid develop curiosity, joy within, and agency around their own body. Help them name what is happening in their body in positive moments as well as more painful/negative ones. Express to them that their body is THEIRS. Practice consent. When consent is breached (as it almost always is in medical settings with children), honor the trauma of that.

If you read to the end... CONGRATULATIONS! Even just having the courage to read and consider advice from a Disabled adult about your parenting is a big deal, and I don't mean that in a sarcastic or condescending way. I get that parenting is the hardest job in the world, and I know that you love your kid so fiercely.  Sending love!

[studiohailstorm]

I wondered what a faerie wheelchair might look/feel like and this was one possibility. She makes me super happy! More disabled characters! More disabled fantasy! 

Turned it into a vinyl sticker which you can find for $2 here! 

www.haleybrown.org

[two sticker pics- one closeup and slightly angled, the other further out all packaged up against a marble pastel backdrop. The sticker is a watercolor-pencil drawing of a woodsy magical being. She has light brown skin and dark brown/green hair and blushy cheeks and looks down peacefully. She wears a brown outfit with a leaf collar and little brown boots, and her light green moth wings poke out from behind her. She sits on a wheelchair made of a moon and tiny planets and her arms rest across the wheel. She has a light pink speech bubble that reads "roll with it" in handwritten text.]

[studiohailstorm]

Ugh. Yesterday congress voted to pass HR 620 - a bill which significantly undermines the Americans with Disabilities Act. You can read more about the bill here) and you can see how your reps voted on this issue here.

In this context, it feels totally absurd to offer you stickers. But I do think Disability Pride is critical and stickers are what I have available in this moment so here we are. I'm quite fond of them. This sheet is 4x6" (so each sticker is fairly small - hopefully small enough to fit on your wheelchair if you have one). If you're disabled and broke right now and you really want one shoot me a message with your address and I'll send one your way. ;)

For the sake of transparency, in a small run these cost me $3.20 each to print, I'm selling them for $5 and donating $1 of each sale of these to National ADAPT. If you have the means to support financially, you could also make a donation to National ADAPT (www.adapt.org) or the Disability Community Resource Center (https://www.dcrc.co/) who are both doing grassroots organizing to fight this bill and support disabled folks. If you'd also like to support my work, feel free to buy a bunch of these for your disabled buds so I can print more and give some away, or buy other things from my site.<3 Thanks for your attention and support, tender beings!

To order these stickers or see my other work, please visit www.haleybrown.org.

[Disability Pride stickers against a pale blue backdrop. They are designed after sailor tattoos but have a distinctly feminine, cartoony flair. They each have purple roses and little light yellow stars and circles floating around them. The color scheme is light pinks and purples and dark greys, black, and white. // The first main sticker is a heart with a black banner slung across it that says "Disababe" in handwritten white text. A bone pokes through the heart instead of a cupid's arrow and three purple roses burst out from behind. // The second main sticker features a wheelchair wheel with a banner that reads "I see u starin." In the middle of the banner/wheel is a literal eye. Two purple roses burst out from behind. // The third main sticker is a cartoon golden tiara with a light pink gem in the middle, with a banner that reads "Piss on Pity." Two purple roses burst out from behind. // The other 5 stickers are purple roses and rosebuds.]

[studiohailstorm]

It’s Okay To Be Sad Sometimes, haley brown 2017

www.haleybrown.org

[another image from the 2018 coping calendar. A light brown mourning dove rests on a brown beam, in front of a solid light-orange-brown background. Below her is a textured blue surface with handwritten text written in her reflection: "It's okay to be sad sometimes."]

[studiohailstorm]

Mermaid Babe 3; haley brown 2017

www.haleybrown.org

[an illustration of a mermaid sitting majestically in her manual wheelchair. She has pale skin with green undertones and is small-statured. She has blue-green hair and a blue-purple tail. She rests one hand in her lap and the other elbow is rested on the back of her wheelchair. She faces forward and is framed inside a black oval with several white star-spots, and the oval is placed against a lavender digital backdrop ].

[studiohailstorm]

Mermaid Babe 2, haley brown 2017

www.haleybrown.org

[an illustration of a mermaid sitting majestically in her manual wheelchair. She has pale skin with green undertones, purple-green hair, glasses and a pink tail. She dangles one arm off the back of her chair and looks straight ahead. Her wheelchair is tipping backwards and she is framed inside a black oval with several white star-spots, and the oval is placed against a light pink digital backdrop ].

[studiohailstorm]

Mermaid Babe, haley brown 2017

www.haleybrown.org

[an illustration of a mermaid sitting majestically in her power chair. She has dark skin and wavy pinky-purple hair and a light green tail. She leans on one arm of her chair and looks wistfully off to the right. She is framed inside a black oval with several white star-spots, and the oval is placed against a light blue digital backdrop.]

[studiohailstorm]

Laying out #thecopingcalendar2018 - taking a creative risk this year by broadening my color palate so much; creating consistency will be more of a challenge! But I am up for it! 🌈

[an image of my hand on my desk, holding a rainbow array of watercolor pencils in the lower right corner. Across the desk small notecards of calendar messages and corresponding grid colors are laid out so that I can decide about ordering.]

[studiohailstorm]

Damnit; haley brown 2017

www.haleybrown.org

[another calendar preview! Against a light orange background, a monarch caterpillar snuggles up on some mint leaves, with handwritten text reading "It's a process, damnit."] 

[studiohailstorm]

Heya! 

I just found an old USB with full-size images of some of my older work! I can finally offer some individual prints that have been requested over the years, and have listed these four on my site! YEY! Sliding scale, starting at $8 USD.  www.haleybrown.org. 

image one: [a doodley water-color image on a light green background. A blue-silver wheelchair wheel with a lush nasturtium vine around it and handwritten text that reads "adapt."]

image two: [a venn diagram (two overlapping circles). One circle is blue and has handwritten text reading "Be Gentle" and the other is purplish-white and has handwritten text reading "Be Fierce."]

image three: [another preview for the 2017 Coping Calendar! A light-green digital background with handwritten text reading "Resilient As Fuck" circling four light-green-blue-pink watercolor succulents].

image four: [a pen line-drawing with watercolor of a person riding an adult trike at the very top of the frame, partially cut off. The trike basket is painted blue and has handwritten text inside that reads "Fuck the Haters" and below the image there is a string of handwritten black text that reads "Do Your Thing"]

[studiohailstorm]

Always in process. Also, today is September 15th, which means that preorders for #thecopingcalendar2018 are halfway over already! I offer them sliding scale starting at $10 and would love your support. 💕www.haleybrown.org.

[marauders4evr]

Holy shit!

All right, listen up, folks, because this is really important. The media has been completely silent on this. The only way I found out is through the ACLU (American Civil Liberties Union) but that’s it. No articles, no news reports, nothing.

There’s a new bill up on the table (H.R. 620) that could keep businesses from not being penalized if they don’t follow the Americans with Disabilities Act.

That’s a mouthful of many contradictions so let me clarify:

The Americans with Disabilities Act was passed in 1990 and is one of the few actual pieces of legislation that disabled Americans have. It’s the big one, the reason there are elevators in buildings, the reason there are ramps, the reason there are curbcuts, the reason there are options for Braille or subtitles, the reason service dogs need to be allowed into a building, the reason accessible parking exists, the reason accessible bathroom stalls exist, the reason you can’t be fired based on your disability, etc. etc. etc.

People, especially businesses, have been getting away with loopholes for years. But there’s always been some sort of enforcement in place, penalizing businesses who don’t adhere to the ADA.

But this bill?

This bill gets rid of that accountability.

This bill sets forward specific requirements (such as a disabled person having to make a formal claim before a building is investigated) that one has to follow before a business is penalized. If nobody is able to meet those requirements, that business gets to get away with not following the ADA without having to change anything or face any legal/monetary consequences. 

This bill could destroy everything that the ADA stands for and make the nation even more inaccessible/unaccommodating than it already is. 

And I know what you’re thinking. “Oh, that dastardly Trump, he mocked that reporter once, I guess this makes sense.”

And no, no, it’s so much worse than that reporter, it’s always been worse than that, we’ve been trying to tell you for over a year and none of you listened. This isn’t just about him being ignorant or prejudiced.

This is about this:

An article from almost a year ago that most of the world ignored.

Other members of congress have been sued as well. And now, rather than fix the problems, they’re all trying to secretly pass a bill that makes it so that they can no longer be held accountable for not following the ADA, letting hundreds of thousands of businesses get away with it as a result.

Don’t let them get away with it!

Signal boost the hell out of this. Send it to your news sources. Call your representatives. The world’s already inaccessible enough. Don’t let it get worse. Don’t let them lose their accountability.

[fierceawakening]

Fight the hell out of this, guys. It’s not on people’s radar like other things are but it’s terrible bullshit. Please don’t forget to call your representatives and tell them to OPPOSE HR620.

[capricorn-0mnikorn]

Thanks for posting this. I just hung up from calling my Representative.

These are the points I’ve made:

The ADA is the law. It has been on the books for 27 years. If businesses cannot follow the law, and run an establishment according to legal requirements, they shouldn’t be in business.

This is a civil rights law, if we start rolling it back now, other laws will likely follow.

Ignorance of the law is no defense. A business can’t claim ignorance of the law if they fail a health inspection in their kitchen, they shouldn’t be protected by ignorance of the law in this case.

And finally, disabled people deserve the same free and safe access to public spaces as everyone else.

[studiohailstorm]

www.haleybrown.org

The Coping Calendar 2018

An echo of 2016's "Be Gentle, Be fierce." Thinking about how necessary it is to be tender.

[On a solid creamy background. A twisting tendril of wild pink-and-purple sweetness curves around the left side, framing black handwritten text that reads "Be Wild, Be Sweet." A light yellow cabbage-moth frames the right side, hovering upper left of the word "wild".]

[studiohailstorm]

www.haleybrown.org

The Coping Calendar 2018, Preview

[Against a solid dusty-rose backdrop, a drawing of my hand reaches up toward a cluster of three blackberries growing on thorny branches. There is a hello-kitty bandaid on my index finger and a feeling of hesitation in the reach. The blackberry brambles weave down the page and circle around handwritten text that reads "Be Careful."]

[studiohailstorm]

www.haleybrown.org

The Coping Calendar 2018, Preview

[another preview for The Coping Calendar, 2018. The backdrop has soft grey-blue blurs with a hint of yellow, reminiscent of a dark night sky. My illustrated hands are in the foreground, lined palms facing up in a quietly receptive manner. Handwritten text (light-yellow fading into cream) reads "Notice Your Patterns."]

[studiohailstorm]

Hey humans of Tumblr! I don’t post on here much but figure I’d pop in since this is where I first started shyly posting my art and slowly starting to think about myself as an artist. I created an illustrated calendar that’s in it’s third cycle this year, it’s called “The Coping Calendar,” and it’s up for presale orders, priced sliding scale starting at $10. Would absolutely love your support! www.haleybrown.org

[In the backdrop, the top third of the page is a muted seafoam-green, and the bottom two-thirds a wave of grey. At the bottom center of the page is a large dark rock with white handwritten text that reads "Balance." The large rock has a stack of delicately balanced smaller rocks in various colors.]

[studiohailstorm]

Hey humans of Tumblr! I don’t post on here much but figure I’d pop in since this is where I first started shyly posting my art and slowly starting to think about myself as an artist. I created an illustrated calendar that’s in it’s third cycle this year, it’s called “The Coping Calendar,” and it’s up for presale orders, priced sliding scale starting at $10. Would absolutely love your support! www.haleybrown.org

[Against a grey-blue solid backdrop, handwritten text reading “Make Space” and “Take Space” arc above and below an image. The image is an illustrated beavertail cactus emerging out of a crack in the ground, which appears to contain a universe. The cactus hosts giant purple-pink blooms.]