#cerebral palsy awareness day | Explore Tumblr Posts and Blogs

cannabiscomrade · 1 year

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February 6-10 is Feeding Tube Awareness Week!

The beginning of February was selected because of its proximity to Valentine’s Day, because we love our feeding tubes. This is my first year as a tubie and I’m looking forward to learning more about feeding tubes and the conditions that necessitate them! I do love my tube, it saved my life!

I am an adult with a feeding tube, and a lot of the awareness and attention surrounding these medical devices is child focused. A lot of children depend on tube feeding to thrive, but there are plenty of disabled adults that depend on tube feeding as well! In 2017 there were approximately 438,000 people with feeding tubes in the US, and 60% of them are adults.

I have gastroparesis, which directly translates to paralysis of the stomach. My stomach doesn’t grind food the way it’s supposed to, and my pylorus sphincter at the bottom of my stomach doesn’t open well to pass food and liquids through. While gastroparesis has a range of impact and severity, I have a very severe case, and I am no longer able to eat or drink by mouth for nutrition. I am 100% tube fed. I went into starvation ketoacidosis prior to my placement.

Tube feeding, or enteral nutrition, has several different forms. There are nasal tubes and there are surgical tubes. Nasal tubes can go into your stomach (NG), duodenum (ND), or your jejunum (NJ) and are typically for short-term use. They can be used for acute illness and malnutrition, or to trial tolerance of enteral feeding. Surgical tubes go into your stomach (gastrostomy/G) jejunum (jejunostomy/J) or both (gastrojejunostomy/GJ) and they’re for chronic conditions and/or long-term use. I have a GJ tube and it looks like this:

I have a GJ tube so that I can bypass my paralyzed stomach and feed directly into my intestine. I can also drain stomach contents from the gastric port, which allows me to drink liquids and drain them out before they make me sick. Different people will have different tubes depending on their diagnosis and prognosis! Some people have one form of tube, and others have separate G and J tubes.

There are over 400 conditions that can require tube feeding. Some of those include

Gastroparesis

Intestinal dysmotility

Cancer

Intestinal failure

Inflammatory Bowel Disease (Crohn’s disease and Ulcerative Colitis)

Cerebral Palsy

Congenital/chromosomal conditions

Cyclic Vomiting Syndrome

Ehlers-Danlos Syndrome

Several trisomy conditions

Prematurity

Other conditions not mentioned in the link above include

Hyperemesis gravadarium, severe nausea/vomiting during pregnancy to the point of significant weight loss and electrolyte imbalance

Acute trauma requiring bowel rest

Eating disorders

This week, I want to promote visibility for disabled adults with feeding tubes. I didn’t know anything about enteral nutrition until I got sick. Once I had a confirmed diagnosis of gastroparesis, the reality that I was facing forced me to learn and adapt quickly to a completely life changing treatment. I know there are other adults like me, as well as tubie adults that used to be a child with a tube!

#disability tag #feeding tube #gastroparesis #tube feeding

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decolonize-the-left · 4 months

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In the winter of 1990, when the Congressional legislation to turn a proposed Americans with Disabilities Act into law stalled in the House Committee on Public Works and Transportation, hundreds of concerned disability rights activists and others from the affected community descended on Washington, D.C. There, they joined with local activists at the White House and at the U.S. Capitol Building to protest the efforts within government to stall and stop the Act from passing.

The most memorable moment in the winter’s activism happened on March 12, 1990, when dozens of these protestors at the Capitol abandoned their mobility aids and began to climb, crawl, and edge up the steps to the top of the west Capitol entrance on the National Mall. Some climbing on their own and some climbing with help from friends and family, they were cheered on by allies, onlookers, and the press. This direct action, which forced Congress to see them, is known to history as the Capitol Crawl.

"Jennifer Keelan-Chaffins got on all fours to begin the ascent. Just 8 years old at the time with cerebral palsy, the climb up the stairs took almost an hour. But she was determined.

"As a matter of fact, I said, 'I'll take all night if I have to,'" Keelan-Chaffins told ABC News about that day."

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zakkusufae · 3 months

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Meeting Neil Newbon at Megacon Orlando. 2/3/24

Here's my fan account of meeting Neil. You are welcome to repost with credit. But I ask you not to repost the photo I share. Thank you!

Truthfully, this will have some personal information but I need to share in order to explain why this convention trip meant so much.

Frankly, when I heard Neil was going to be at Megacon Orlando, I immediately told my sister about it, and we impulsively planned it in less than three weeks.

I, along with my sister, always admired his work since Detroit Become Human but only recently found out about the community and other things such as Twitch.

However, I have trauma in regard to being in new places. I also struggle with a disability as well as other things. I have cerebral palsy. (The easiest way I can explain it is that my brain is slow in sending messages to my body, my legs specifically.) Because the con was so crowded, I needed to use my wheelchair. I had never done things like autographs or photo ops. It was all new to me.

Originally, we had our autographs scheduled on Friday but moved them to Saturday when we heard he was going to be delayed. When Saturday came around, my sister and I were surprised to discover we could use the ADA line. (Again, we’d never done this before) The line alternated between regular and ADA in order to remain fair, which I appreciated.

I was really nervous as I got up to the table as I’m sure many of us were and then I was greeted with the warmest “Hi, how are you? I’m Neil it’s nice to meet you,” as he shook our hands. He asked what our names were and such and then he asked what I wanted written on the Astarion print I had bought the day before. I had to repeat it for him because I’m guessing it was one he hadn’t written much.

We gave him our gifts after my sister had gotten her autograph. And I was ready to roll away as I felt I was keeping the line, but he literally came around the table and asked, “May I give you a hug?”I accepted, but I was so nervous, and due to my condition, I tend to avoid being touched as I can get stiff. It was very gentle. And what touched me the most I think was that he offered. I'm not used to that at all.

Later, during the photo op, the kindness remained. He asked if he should come down lower for the photo or stand, and I just said whatever you’re comfortable with. He came lower anyway.

The whole gesture was really kind and in a weird way I felt seen? It’s difficult to explain. But basically, it was a very touching experience. I’m glossing over a lot, but these small things meant so much. I cried after everything sank in... He was really considerate even when I thought I was being a burden to everyone in line. It was a gift, really, and I won’t forget it.

I think of this interaction as bringing awareness. I can't speak for everyone who struggles with a disability but regardless, I think sharing it would be helpful. But there's one thing I want to mention before I end this. The quote I chose was, "I want to know what the world sees when it looks at me." Because I hope someday people can see more to me than my limitations, and I feel I'm worth that much.

We're all survivors in some way. Survivors in grief, illness, and other things, but in a way, we're all surviving as we live. Each day is a challenge, and sometimes it really feels awful, but despite that, it's worth it. And I'd like to try living.

I hope you enjoyed reading it. ♡ And to Neil, I know you probably won't ever read this, but thank you so much.

#neil newbon #astarion baldurs gate #astarion #astarion ancunin #baldur's gate 3 #bg3 #detroit being human #dbh #elijah kamski #gavin reed #karl heisenberg #resident evil #resident evil village #larian studios #my writing

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clownrecess · 1 year

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I want to talk about AAC representation on TV, and why it is so so important.

I am currently only aware of five nonspeaking characters in TV shows and movies, and only two of them are represented in a way that makes me as a nonspeaking person feel actually seen. The majority are disrespectful mockeries of nonspeaking people.

It is so important to be able to see people like you. It is so important. Without representation, it feels like people who look like me and act like me are weird or that we are at least meant to feel that way. It feels like we are not seen, and listened to. If we were, and we were fully accepted as existent humans with complex thoughts and identities, we would be shown on television the same way speaking people are. There would be a main character who has a best friend that is a nonspeaking autistic who works in fashion. There would be a main character with speech apraxia who loves making clay mation and makes a career out of that. There would be a queer nonspeaking person with cerebral palsy who is a video game designer. AND MORE (obviously). We would be shown as people with cool and unique careers, interests, etc. Currently, most of the "representation" is either there to help another character get further development, or the character is litterally just "look!! I am disabled!" and exists purely as a character with absolutely zero personality that only exists to exist as a disabled character.

If I had representation that showed people like me as ACTUAL PEOPLE, my disability would not only be so much less stigmatized, but I would feel less anxious to exist in public.

The frequency of which I am fake claimed would decrease, my confidence would increase, staring would decrease, etc.

As someone who uses an AAC device every day, I want to see more representation and understanding of this technology in the media. Let’s start including all types of communication in our storytelling and break down the stigma surrounding AAC devices.

#disabled representation #nonspeaking autism #nonspeaking representation #aac

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wen-kexing-apologist · 7 months

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Bengiyo's Queer Cinema Syllabus

For those who are not aware, I have decided to run the gauntlet of @bengiyo’s Queer Cinema Syllabus and have officially started Unit 2: Race, Disability, and Class. The films in Unit 2 are: The Way He Looks (2014), Being 17 (2016), Naz and Maalik (2015), The Obituary of Tunde Johnson (2019), Margarita With a Straw (2014), My Beautiful Laundrette (1985), Brother to Brother (2004), and Beautiful Thing (1996)

Today I will be writing about

Margarita With a Straw (2014) dir. Shonali Bose

[Available on Amazon, Run Time- 1:40, Language: Hindi and English]

Summary: A rebellious young woman with cerebral palsy leaves her home in India to study in New York, unexpectedly falls in love, and embarks on an exhilarating journey of self-discovery.

Cast: Kalki Koechlin as Laila Kapoor Revathi as Shubhangini Kapoor Sayani Gupta as Khanum

___

I would like everyone to know that at the time of writing this, I was still crying about this movie. It is perfection. I literally…I have so much, too much, and yet nothing to say about this film. If you had asked me before tonight if there would ever be a reality where I was nearly in tears over watching a character on screen masturbate, I would not have really believed it, yet here we are. THIS FILM IS PERFECT BECAUSE THEY MADE THEIR DISABLED CHARACTERS ACTUAL FUCKING PEOPLE WHO ARE HORNY, INDEPENDENT (within the scope of their own physical abilities), AND FLAWED HUMAN BEINGS. Like???????? That in my lifetime of watching films the existence of characters with disabilities is rare enough already, and if you get in to the more stigmatized/infantilized disabilities, say for example, having a main character and romantic interest with cerebral palsy, the acknowledgement that they are people with sexual attraction and desire is almost non-existent.

Like, how many power wheelchair users have I seen being a subject of romantic interest? This film does not shy away from any aspect of being disabled, while simultaneously eliminating any and all possible feelings of the film itself being some type of inspiration porn for The Struggles Of Existing As A Disabled Person. This is not a “aww look the able bodied girl falls in love with the quadraplegic man isn’t that lovely?” types of stories. This is a film where disability really just happens to be included and life and the conflicts in the film have absolutely nothing to do with their actual disability or overcoming some aspect of their disability.

The closest we get to Laila and Kahnum’s disabilities even mattering to the central conflicts in the story in my mind, is the implication of the way society has viewed them that has fed in to their own insecurities. A huge part of Laila’s journey is self-love and self-acceptance. Laila is obviously feeling dejected after a round or two of rejections from boys she has been interested in. And then she meets a girl, Kanhum who is blind, and hot, and wonderful, and they start a relationship. At some point, Laila cheats on Kanhum, having sex with a boy from her college, Jared, who she has been crushing on since her first day of classes.

One of the heaviest moments in the film for me was when Laila finally admits to cheating on Kanhum by having sex with Jared one time while Laila and Kanhum were dating. For an explanation as to part of what caused Laila to have sex with Jared, Laila says, to her blind girlfriend “Jared could see me, that’s why” and Kanhum walks away. But here is the thing, this movie trusts its audience, this movie lets the full weight of that admission hang in the air, but doesn’t beat you over the head with what that line is actually saying.

gif by @celluloidrainbow

To me it is clear as day that Laila wanted to have sex with someone that could see her so she could feel desirable in the body that she is in. Kanhum has her own way of seeing, in a beautiful hands hands hands moment Kanhum sees Laila by feeling her body, her face, her lips, and she tells Laila “you’re so beautiful” and she is fucking right. But I can see how Laila, after multiple rejections, may have a hard time believing that someone that does not have the ability to physically see her body [In a similar way to Frankenstein’s creature finally finding kindness and acceptance from a blind man, and being chased away from that warmth by his children when they physically saw what Adam looked like].

And for Kanhum, it is clear how much that line devastates her, because she can see, she can see in the way she has learned how to see, and she sees well enough by feel to know that Laila is beautiful. You can tell how much she is hurt by the implication that Laila needs to have her beauty validated by a “normal” (as the movie names them) in order to believe she is desirable, even after Laila has been in a months long relationship with Kanhum, and they’ve caressed each other, and made out, and fucked. Kanhum’s reaction makes me believe that Kanhum is worried Lalia doesn’t trust her opinions on beauty because she can’t see the way everyone else can. But neither of these insecurities are voiced aloud, they just hang in the air between them instead.

I love how much this movie demonstrates the balance in a family’s relationship to disability. That the film understands that Laila cannot bathe herself, or go to the bathroom unassisted, but on the flip side, Laila is able to help her mother bathe, or warm her mother’s feet. Kanhum needs to have her swim suit handed to her, but she can also help Laila change in to her own swim suit. Laila’s mother cooks for her, because she’s her mother and that’s what she would do anyway, but once her mom flies back to India, Laila is shown cooking meals for herself. And they take the time in an hour and forty minute film to show Laila’s multiple attempts at frying an egg, and all the ways she ends up adapting and improvising in order to make it work. I love that they show the wasteland of broken eggs, that Laila shoves in to a trashcan with a spatula because she doesn’t have the grip strength or range of motion to just sweep those off the counter and in to the trash with her hand.

I love the way that sexuality and disability intersect in this film. When Laila comes out to her mother as bisexual, her mom is pissed and does not speak to her for a day or two, and Laila calls her own mother a hypocrite: “Abnormal. That’s what the world said about [my disability] too. What’s your problem now?” And it’s such a great point, because we are at a time in this story where every aspect of these characters lives are part of their normal, or added accessibility tools are just swiftly adopted in to their lives. Laila is never infantilized, she is trusted to be independent, to live abroad without her parents there, and her mother is about as anxious as any parent seeing their kid spread their wings for the first time would be. Laila has a caretaker in New York that we literally never see, because it isn’t relevant, and every time we see someone taking care of Laila or on the flip, Laila taking care of someone else, there is a level of intimacy to it. Familial, platonic, sexual, romantic, you name it.

gif by @celluloidrainbow

I love the complexity this film is able to build between its characters, especially in the way that Kanhum was deeply wounded and betrayed by Laila, but Laila is still the one that comforts her when she is crying about the information late at night. And Kanhum is the one to hold Laila and comfort her while she cries over the death of her mother.

My only criticism is that they did not hire an actor with cerebral palsy or an actor who was blind for the roles, though Shonali Bose did initially set out to hire an actor with cerebral palsy. But according to the Wiki on this, there were no actresses with cerebral palsy in India, and the woman Bose wanted to play Kanhum initially, is blind, but was uncomfortable with the sexual elements of the film and opted to act as an advisor to the actress who ended up playing Kanhum. Kalki, who plays Laila, spent a lot of time working with Bose’s cousin to learn the physicality and speech patterns of people with CP.

By/For/About

I would say for me with this one, it is not For the queers, but it is CERTAINLY FOR DISABLED PEOPLE. Like you can tell the writer has some very personal experience with disability from the depiction of disability itself in the film. But, Shonali Bose wrote and directed this film as a result of a conversation with her cousin, who is disabled, where she talked about her desire to have a normal sex life.

Favorite Moment

gif by @celluloidrainbow

Literally every single one, every time Laila had sex, every time she flirted with a hot boy, every time she made music, every time she smiled, every moment of sexual tension between Laila and Khanum.

Up until the very last scene I would have said that my favorite moment was when Laila is dancing with her family the night she leaves for NYU. It’s just so full of warmth, and love, and joy it made me so happy. But then.

BUT THEN I GOT TO THE LAST SCENE, WHERE LAILA TAKES HERSELF OUT ON A DATE AND I BURST IN TO TEARS!

Hands down that is my favorite moment. Laila looks absolutely stunning with a new hairdo, and a fancy dress, and she’s sitting in front of a mirror, cheersing her reflection with her margarita with a straw. It made me so happy, this understanding that Laila loves herself, and is committing to loving herself. GOD IT’S SO GOOD AND KALKI WHO PLAYS LAILA HAS THE MOST BEAUTIFUL SMILE AND HER EYE SHINE IS OFF THE CHARTS AMD GAH IT’S UTTER PERFECTION.

Favorite Quote

Again, I have a couple. Laila, upon having her professor say he found someone to type for her: “Actually, I can ty-” *sees the hot boy that would be typing for her* “That would be wonderful”. Yeah girl, get it.

Laila, trying to come out to her mother: “Mom, I’m bi,” // Her mother: “Am I any less of a bai (maid)?” Ah good old multilingual problems used for comedic effect.

But, ultimately, I had to settle on:

“This is scary for me. It’s wonderful, but so scary,”

Because, I love me a good, candid conversation around how it feels to be queer, to embrace that queerness, and to know that eventually you will have to share that queerness with others (aka potentially come out to your parents). I also love it because I didn’t really see a struggle for self-acceptance around Laila’s sexuality. She is having a good time, being cute with her girlfriend all the while she is trying to figure out what her sexuality is. I just love when I don’t have to see a character struggle with realizing they are queer, and being scared feels like a natural part of being queer, and having to acknowledge that queerness to others, especially if you don’t know how they are going to react is, can confirm, terrifying.

Score

10/10

this is my favorite film in the syllabus thus far.

#queer cinema syllabus #margarita with a straw #everyone should watch this movie

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ryanguzmansource · 7 months

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📸 • iamgavinmchugh: Happy national cerebral palsy awareness day! I'm so grateful for the gift of my beautiful life (10.7.23)

#📸#🔍#🚒#10.7.23

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brightlotusmoon · 1 year

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March 1 is Disability Day Of Mourning.

March is Cerebral Palsy Awareness Month.

March 25 is Cerebral Palsy Awareness Day.

Enjoy being Aware of Cerebral Palsy!

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murderousink23 · 1 year

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3/25/2023 is Freedom Day 🇧🇾, Earth Hour 🌏, National Cerebral Palsy Awareness Day 🌏, Dante Day 🇮🇹, National Waffle Day 🇸🇪, National Lobster Newburg Day 🦞🇺🇲, National Medal of Honor Day 🇺🇲, National Tolkien Reading Day 🇺🇲, Slavery Remembrance Day 🇺🇳, Detained Staff Day 🇺🇳

#freedom day #earth hour #national cerebral palsy awareness day #dante day #national waffle day #national lobster newburg day #national medal of honor day #national tolkien reading day #slavery remembrance day #detained staff day

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selectivechaos · 1 month

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25th of march is cerebral palsy awareness day!

[ID: What is.. Cerebral Palsy?

Cerebral Palsy affects about 1 in every 400 children born in the UK. There are three main types:

Spastic: 75-90%. Spasticity tightens and contracts a person's muscles. This can make movement difficult.

Ataxic APX 5%. Ataxia causes difficult with balance, co-ordination and spacial awarness. It can also affect speech and language.

Dyskinetic APX 5-20%. Dyskinetic CP makes it difficult to control limbs and muscles. It may affect speach and language.

Cerebral Palsy affects different parts of the body. There are four diagrams: one with the left arm shaded in reads: “Monoplegia is One limb, usually an arm”. The diagram with the left half of the body shaded in reads: “Hemiplegia is One side of the body; legs arms and torso”. The diagram with all of the body except the head shaded in reads: “Quadripligia is All four limbs”. The diagram with just the legs shaded in reads: “Dipligia is Symmetrical parts of the body; legs or arms”.

No two people experience Cerebral Palsy in the same way. People can experience difficulties with different things: Breathing, movement, posture, balance, pain, eating, sight, hearing.

The infograph is attributed to CP Sport (Cerebral Palsy Sport). On facebook and twitter as: @/cp_sport. And on the website: www.cpsport.org.

Second image text reads: 10 Things I didn’t know about cerebral palsy (until I had a kid with cerebral palsy).

1. Cerebral palsy isn't so rare.

2. It's caused by brain damage.

3. There are different kinds.

4. There are varying degrees

5. It messes with muscles big & small

6. It can make you tight or loose.

7. It can be different every day.

8. There is no cure.

9. It doesn't disable your personality.

10. You shouldn't feel bad for people with cerebral palsy. /End ID]

#cerebral palsy #cerebral palsy awareness #not sm/sad

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cerebipalsy · 27 days

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Blue+green+bigender bathroom selfie for you this TDoV/last day of Cerebral Palsy Awareness Month/Autism Acceptance Month Eve 💙💚

(They/them only, friends can reblog)

#Trans Day of Visibility #LGBT #trans tag #nonbinary tag #K.png

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chaoticornot · 2 years

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Wishlist season 6

This is my very late rendition of what I want to happen in season six of 9-1-1. I haven't watched anything yet, so it's spoiler free.

- Eddie is in therapy. What I mean is I want to hear about his therapy and that he is still going and maybe even seeing a little bit of it.

- I want Chim to apologise to Buck about punching him because that was out of line, and it was never acknowledged, even though I think it was a lot for Buck, emotionally. Or at least an acknowledgment that it happened and that the team and Maddie are aware.

- I want the team to find out about the will and their reactions to it.

- I want more poker nights with Buck, Maddie, Josh, Hen, and Chim because it's fun.

- I also want Eddie hanging with the girls, trying new recipes, and just having fun and self-care, yay! And with the girls, I mean Karen, Linda, and May, even if she is off to college.

- About May going off to college plus Harry being with Micheal. I am curious to see how Bobby and Athena's relationship is going to progress because they always had the kids there and worried about them, so how different is it without them?

- I also need more detective and detective Wilson. I love them. More pleaseee. Just cute, no angst.

- Uncle Buck (Jee's)/ dad Buck (Chris's)

- I also always need more Chris. Always.

- I want Maddie and Chim back together, but I feel like they need to talk about everything that happened and why it happened the way it did and for them to slowly work their way back to each other.

- More team hangouts

- Carlaaaa!!!!

- One thing I am not sure about is wanting more of Eddie's childhood because what they did in season 5 with Eddie's family was bullshit, and I don't want that to be made worse. Like, I want it only if it follows my idea of canon otherwise, never mind.

- Also, I DON'T want anyone to die.

I know Chris growing up is a theme for this season, and everything under here has something to do with that.

- I want Eddie to explore himself and do things that he hasn't done before and normally wouldn't do but has the freedom to do so now. Also, partly because I don't think he was able to when he was younger. Maybe go clubbing, meet new people, and not tell anyone about it because he is a bit ashamed but also kind off wants to figure it out himself first. And maybe a bit of Buck is angsting over the fact that Eddie is not telling him something. Not incredibly angsty, though, just a little for spice.

- I think Eddie is going to struggle a lot with Chris becoming independent for multiple reasons. One is because of Chris' cerebral palsy. He wants to protect and help him, but he starts to realise that he can't always, which is hard. Second, I think he is going to doubt his worth as a father, specifically. I think he feels that he already missed so much of Chris's life, and he wants to keep him close to himself a little longer. He is going to second guess all his decision, especially if Chris is going to get emotionally hurt.

- I just know that Eddie is going to talk to Buck about and Buck is going to try and soothe him and help but internally Buck is just as freaked out about it as Eddie. So they are freaking out together. Buck rants to Hen about Chris growing up because Hen is in that same stage with Denny. Also, someone needs to address that Chris is looking more like Buck, every day.

- I also need more domestic Buckley-Diaz family moments. They heal my soul.

- And last but not least, maybe unpopular, but I don't want Buddie to get together yet in the first part of season 6. The reasoning is that of the Eddie thing (hoe) and because I love a slow burn and because I want to see everyone being done with them being oblivious, and I want outsiders' perspectives on their situation. Like the PTA mums. I also want Chris to just tell people that he has 2 dads but that they are not married but should be and will be if Chris has anything to say about it.

Also, I want the love confession to be this beautiful, small, peaceful moment. For example, Eddie accidentally kisses Buck, goes on with his day, and then somewhere realising, oh shit, I kissed Buck, and then I want him to go back home to a sleep rumpled Buck and then a confession. Or cuddling in the same bed because of nightmares, and then waking up next to each other and then a love confession. I'd rather it not happen when one of them just almost died. Anything but that.

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