Showing posts with label disability awareness. Show all posts
Showing posts with label disability awareness. Show all posts

Sunday, December 23, 2018

Making Pies


My podcast partner, Jason Lehmbeck suggested that I put up an end of year post, a Who Lives Like This?! list of our favorite caregiver podcasts, and I said, Jason! I'm busy! Taking care of Sophie and making cakes! Jason reminded me of the fabulous song by Patti Griffin called Making Pies which is now running through my head -- as I make cakes for the masses and care for Sophie. I think you, dear Reader, should listen while you read:



The past six months have been incredible for the Who Lives Like This?! podcast -- we've talked to so many lovely and amazing mothers and fathers of children and young adults with disabilities. We've talked to those in support positions, and we have several terrific guests coming up in the new year -- siblings, mothers, fathers, bakers, pie makers, business tycoons -- well -- not business tycoons. We'd love to have a caregiver on the show who's also a business tycoon, though, so if you know someone, let us know. Pie-baking, as you might guess, doesn't pay all the bills!

So here goes on a list of caregiver podcasts that we love.


Ours truly
www.wholiveslikethispodcast.com


Lomah
www.lomah.org


Mama, Build Your Empire
https://mamabuildyourempire.podbean.com

Mama Bear
www.mapunknown.org

Learning Not To Swear
www.tedlyde.libsyn.com

The Accessible Stall Podcast
www.theaccessiblestall.com


Reader, please leave a comment here or elsewhere if you know of a podcast that might appeal to this mighty group of caregivers. Share the post, too, if you are so inclined.

Now, I've got to go make pies.

You could cry or die 
Or just make pies all day 
I'm making pies 
Making pies
Making pies 
Making pies



Monday, September 10, 2018

The Limitations of the Tiny Little Mother Mind™ and #SeezJahBoy



It's a big world.

That's what I tell myself when I read about or hear about things that are otherwise incomprehensible. It's a big world, I thought when I read about plushies in a Vanity Fair magazine in the last millennium. It's a big world, I thought when I actually ran into a plushy convention at a resort hotel in Orlando where I was attending a children's healthcare convention. It's a big world, I thought, when people started talking about reality shows and women being famous for being famous,  It's a big world, I thought when Arnold Schwarzenegger was governor of California, and it's a big world, I thought, when certain celebrities insured their famous asses, literally. It's a big world, I think, when people get all geared up for the season of bashing brains into dementia, otherwise known as football. It's a big world, I thought when people -- some of whom I actually know and love -- voted for and continued to support Donald Trump, even after he imitated and mocked a disabled man and bragged about his prowess grabbing women's pussies. That one was a stretch, to tell you the truth.

A lot of people are excited about last night's Miss America pageant -- how Miss Michigan, a blonde Barbie doll, made a comment about the bad water in her home state and appears "woke" in the newest sense of the word, and Miss New York, a black Barbie doll, won the prize. It's a big world, I'm thinking, wondering how in 2018 we still have beauty pageants (although I've read they're no longer "beauty" pageants, and there's no more bathing suit competition). What's that expression? Whatever floats your boat?

Anywho.*

My tiny little mother mind™ was seriously taxed today when I learned that Netflix released some movie called The After Party that's getting all the raves. Evidently, the main character has a seizure (after smoking marijuana) while rapping on stage, projectile vomits and falls to the ground writhing. The moment is captured on video, it goes viral, he's called "Seizure Boy," and soon everyone is doing the #SeezJahBoy dance.

This is comedy.

Sigh.

Where do we start? The young man who plays the character is an up and coming rapper and has a bazillion followers on Instagram. He sees himself, ironically, as a bullying advocate. People with epilepsy are commonly bullied. This is a fact. I know countless people whose children have been bullied, have been mocked and derided when they've had a seizure in school. The stigma of epilepsy is still so strong that adults with epilepsy often don't tell their employers that they have it. Teenagers with epilepsy are often at higher risk for anxiety and depression, and much of that can be attributed to our culture's ignorance of the disease.

So, yeah, back to #SeezJahBoy. Despite condemnation from different news sources and epilepsy and seizure awareness foundations, the hashtag is viral at this point. I have heard from good friends in the epilepsy community that when people go in to these conversations on Twitter and Facebook, in an attempt to counter the ignorance, they are being called trolls or "racists" (because the movie is predominantly by black people). How many people did this show have to go through to get put on the air? Are we overly sensitive as parents of children with epilepsy or individuals with epilepsy? Do I think the show should be pulled? To tell you the truth, this sort of thing so taxes my tiny little mother mind that I think nothing at all. I don't have the energy to think about some stupid movie that makes a mockery of people with epilepsy. I don't give a fuck about the writers, the editors, the sound people, the young actors and wannabes that made this movie. There is no big world that holds such shit. The big world shrinks in to a dot, and that dot is a portal to my house where my epileptic daughter sits in her wheelchair, the little vein in her forearm penetrated by a needle that brings an infusion of antibodies to her brain, so many antibodies that they literally flood her brain and dilute out the bad antibodies that have been wreaking havoc, causing her to seize, near constantly, in her sleep and subsequently destroying her ability to walk and eat and move in the world.

Dance on, #SeezJahBoy people.

The world is ugly,
And the people are sad.

Wallace Stevens, Gubbinal


















*New Readers should know that I hate this expression and only use it facetiously.

Saturday, April 1, 2017

The Awareness of Birds



Toes of sneakers on a dirty sidewalk with a silhouette of a crow blacked into the concrete.*


I think I told ya'll about my new gig, over at Cerebral Palsy Foundation. I will be writing, I think, monthly about various topics related to disability. CPF consults with the television show Speechless, a hilarious sit-com that very accurately portrays a family who lives with disability. The show features a terrific actor, Micah Fowler, who actually has cerebral palsy. Minnie Driver plays the mother, and I have to say that if it weren't for her being incredibly thin and glamorous with a British accent, the part could be mine.

In any case, this writing gig is awesome, and my first short piece is up on their blog. It's called The Awareness of Birds. March was Cerebral Palsy Awareness Month, so the topic for the month was "awareness."

Check out the Cerebral Palsy Foundation website, too. Poke around, donate, increase your awareness.











The Awareness of Birds













*I'm learning about how to caption photos for the vision-impaired. I'm bummed that I haven't been doing this all along, but I guess that means that even the most aware of us need to constantly improve and learn and listen.

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