#instead of accommodations i get a toddler treatment

[thelifeofacactus]

I love being treated like a 5 year old because I disclosed my disability at work!!!

[queer23goose]

importance of self-diagnosing autism

this is a big blurb i wrote a while ago after i saw some Instagram post complaining about autistics self-diagnosing. it pissed me off and i typed this up just to get my thoughts out. i won’t discuss my own process of receiving information and a diagnosis in this post. but for the record, i consider myself autistic and i have been professionally diagnosed.

seeking a diagnosis helps us feel validated in our struggles, especially when we're surrounded by allistics (non-autistic people) and it seems like nobody shares these experiences-- it's incredibly isolating.

medical care in the US is extremely expensive and out of reach for many. we shouldn't have to pay to have access to resources, especially when determining the credibility of a "professional" is often difficult until you meet with them in-person.

furthermore, so much of the widely used research is biased, not credible, or just false. AFAB (assigned female at birth) and PoC are still so under-diagnosed. for AFAB people, i believe that the main cause of this is misogyny instilled in our culture, even against toddlers and children. because allistics are usually the ones diagnosing us, diagnoses are given out based on outward expression instead of our symptoms and experiences. this means that even as kids (where most diagnoses are given), AFAB autistics' reactions are dismissed because they're expected to be dramatic and sensitive.

the DSM-5 was released in 2013 and the first issue to dissolve the diagnosis of "asperger's syndrome". i personally speculate that asperger's only existed in the first place because autistics were considered stupid, and ableism in the medical community wanted to separate the two. in reality, autism has a high comorbidity with disorders that can affect intellectual development. additionally, ASD (autism spectrum disorder) itself inhibits social communication, which also commonly leads allistics to conclude that we're idiots-- especially with nonverbal autistics.

the "professionals" we're supposed to be relying on are often invalidating, conceited, condescending, or incorrectly educated. some even still practice incredibly harmful ABA (applied behavior analysis) "therapy".

self diagnoses cannot do harm, because our diagnoses don't unlock some huge hidden irreversible treatment that's dangerous to allistics. it typically just serves as a box needing to be checked in order to receive aid or accommodation. since it's a spectrum, we focus on managing symptoms as we individually experience them. if someone did misdiagnose themself with autism to feel validated then that's okay. i'm glad that helps them feel better. someone with ADHD who's mislabeled themself as autistic is still just addressing their symptoms.

if people are parading around as autistic caricatures to mock us... the problem is still only allistics intentionally causing harm, not the autistic community. listen to our experiences because bias and misunderstanding have widely spread misinformation.

finally, it's important to note that having an official diagnosis could provide huge obstacles. for example, many countries can still legally deny us citizenship just because of our autism. there are numerous other risks, and more legislation targeting us is still trying to be put in place. this article summarizes a lot of these: Seeking an Autism Diagnosis? Here's Why You Might Want to Rethink That.

sending lots of love to the self-diagnosed autistics :)

[playcaroplay]

The Problematic Archeron Sisters

My hot take on the Archeron Sisters below, because people in the fandom are piquante as fuck and I live for it. I see so many posts clutching their pearls in dismay because the sisters are all “problematic” in their own ways. Personally I like that they’re incomplete characters rooted in trauma because part of the fun of reading books is filling in the blanks with our own interpretations.

I like framing the sisters problematic behaviours in ACOTAR as the Fight Flight Freeze and Fawn responses:

Fight - Nesta and Feyre

Nesta and Feyre both respond to the trauma of their poverty in different ways, but both are fighting against it. Nesta chooses to inflict violence to try to spur her caregiver into protecting her, as if to say ‘Can’t you see how bad this is? Can’t you see I’m suffering?’ Feyre fights against the trauma by facing the reality to a punishing extent - not allowing herself levity or peace, just pure hyper vigilance at all times (except for maybe the barn sex, but she doesn’t really allow herself to enjoy that either). 

Flight - Nesta and Elain

Nesta and Elain avoid their trauma by pretending that they can still use their old coping mechanisms and get through their new life. They run from their reality by clinging to their old life and customs, as if those customs are relevant in the new situation (ex. Nesta acting superior, Elain focusing on gardening for pleasure, not survival). They focus on material goods to satisfy their emotional needs, while relying heavily Feyre to fix their problems instead of facing them.

Freeze - Elain

Elain is the classic ‘her looks will get her married’ trope, with no hard skills to help with survival. That shame is paralyzing and her only real skill is intense positivity in the face of adversity. In later books she says that she’s often underestimated, partly because her first response to conflict is to be overwhelmed. 

Fawn - Feyre and Elain

Both Feyre and Elain are caretakers in their own right. Feyre - a tired mother to three adult sized toddlers. Elain - being almost too sweet and accommodating so that she stays under the radar and doesn’t get hurt.  

If you consider that all three sisters were responding to extreme poverty and instability in diverse ways, their problematic treatment of each other doesn’t seem to be so villainous. Also they’re sisters - so layer in jealousy, and intentionally annoying each other for the sake of entertainment also contributes to it. 

And yeah, they treat each other pretty crappy sometimes, but I’m down for it. How insanely boring would these books be if everyone was pious and perfectly moral. Who would read that shit? Gimme the messy, sometimes toxic but rewarding relationships anyyy day. 

also No Nuance October -- I think that SJM wrote the first book without necessarily considering that Elain and Nesta would have such robust subplots in the later books, and wrote them as the evil step sister trope to make Feyre more tragic in ACOTAR. One dimensional with actions whose sole purpose is to further Feyre’s character development. 

[mst3kproject]

The Ape

In the vein of movies that should not be confused with eerily similar previous entries, The Ape is distinct from The Ape Man... but not by much.  Both feature a slumming horror superstar, glandular secretions, and a stupid gorilla suit.  All these things also showed up in early seasons of MST3K, of course, and The Ape Man also has a surprise bonus.  Apparently, the guy in the gorilla costume is none other than Crash Corrigan, of Undersea Kingdom!

Long ago, Dr. Adrien lost his daughter to polio, and ever since he's been obsessed with finding a cure.  That sounds pretty noble, but unfortunately, Adrien is a mad doctor, so the cure he comes up with requires killing healthy people to drain them of their cerebralspinal fluid!  In order not to arouse suspicion, he kills and skins a gorilla that escaped from a circus, and wears its hide when he murders people... you know, as one does. To nobody's surprise but his, he ends up getting shot, but hey, at least he cured beautiful young Frances' paralysis!

This is a weird, dumb movie but one thing I can say in its favour is that everybody seems to have given it a good try.  This material was far beneath Boris Karloff but he takes it seriously and actually gets a couple of decent moments, as does Maris Wrixton (who was also in The Face of Marble) as Frances.  Nobody else is even close to Karloff's level, being just bland 40's actors who talk too fast, but none of the main cast are phoning it in, either.

Conversely, the worst thing in the movie is its truly horrendous gorilla suit.  The puppet face shows the actor's eyes and can curl its lip, which is cool, though the features don't look very gorilla-ish.  The rest of the suit, however, is terrible. It's way too shaggy and in order to give it a gorilla-like silhouette, they stuck a big hunchback on it.  This might have worked if Corrigan had tried to walk on all fours like gorillas actually do, but instead he waddles along upright like a toddler with a full diaper, which ruins it.  The people who made the movie also appear to think gorillas are nocturnal which, for the record, they are not.

Gorillas were kind of a big thing in movies of the 40's and 50's.  The species had been scientifically described a century earlier, but hadn't really been studied until the 1920s and most people had never seen one outside of King Kong. Films of the period were not kind to the gorilla.  One of the first gorilla movies was 1930's Ingagi, which purported to be a documentary about gorillas kidnapping women as sex slaves.  That kind of set the tone, and subsequent movies depicted gorillas as creatures prone to violence and rape.  Examples from this blog alone are numerous: The Ape Man (1940), Panther Girl of the Kongo (1955), and Bride of the Gorilla (1951) for starters... Robot Monster (1953) might also count.

The Ape has a slightly more nuanced approach to gorilla behaviour.  Yes, its gorilla does maul people to death... but the first victim is its trainer, who has been shown mistreating it.  Another circus employee even tries to tell him that he'll catch more flies with honey.  When the ape batters its way into Dr. Adrien's house, it does so in order to get at the trainer's coat, which Adrien left draped over a chair when the dying man was brought to him for treatment.  We see far more fear of the escaped ape than we do of the animal itself, and it does not commit near as many murders as Adrien does while dressed in its skin!

So that's halfway progressive for the 1940s.  We can also look at the treatment of Frances, the wheelchair-user partially paralyzed by polio.  She is clearly meant to be an object of the audience's pity, and Adrien is obsessed with making her able to walk again – as he could not do for his own daughter.  To some extent the movie infantilizes her, as she is clearly dependent on her mother, unable to have much of a social life, and her boyfriend Danny professes his willingness to 'take care of her'.  When she regains movement in her legs at the end of the movie, she and her mother immediately burn her wheelchair.  Apparently she's not allowed to build up her stamina slowly... if she walks ten minutes from home and then can't continue, she's just gotta sit there until she recovers or somebody finds her.

On the other hand, Frances' family aren't trying to force Adrien's possible cure on her, but let her choose it for herself. Her mother doesn't mind looking after her, and Danny is happy to accommodate her by, for example, hiring a cart so she can accompany him to the circus.  Danny in particular is very suspicious of the fact that the injections Adrien gives to Frances are causing her pain, and takes the doctor to task for it, telling him he would rather have her disabled and happy than walking but in pain.  “I'd rather carry her around all my life!” he says.  Her loved ones are willing to try for the cure, but it doesn't seem like anyone will be miserable if it fails.  Frances herself wistfully admires the acrobats at the circus, but shows no anger or bitterness that she cannot be like them.

Frances is even allowed some initiative, as she hurries down the road in her wheelchair calling to Dr. Adrien and trying to warn him that the gorilla is in the area.  This, ironically, is what leads to Adrien getting shot, as it attracts the attention of the posse hunting the animal.  But as Adrien lies dying, he gets to see Frances standing for the first time in ten years, so I guess we're meant to think this was all worth it.

But was it?  Several people died in order to provide the spinal fluid that helped Frances heal.  The movie shows them as terrified of Dr. Adrien and/or the gorilla, but other than that it is oddly uninterested in their fates.  None of the deaths are presented as tragedies, with families left in mourning... the only family we hear about for the gorilla trainer is a father who is already dead, and another one of the victims was an asshole who told his wife if she didn't like him cheating on her she could always drown herself(!??).  So... are we supposed to think they don't matter?  That their deaths are acceptable because they helped Frances – who was not dying or even deteriorating, and was satisfied with her life as it was – to a cure?

It is notable that we do not see what happens when Frances finds out that people had to die for her to be able to walk.  She would have to reassess her opinion of Dr. Adrien, whom until now she has thought of as a loving father figure.  She would have to figure out what this means for her future and perhaps need reassurance that she is not culpable.  Her unconcerned happiness at the end suggests that nobody bothered to tell her, and that she has not yet made the connection herself.  This is really quite unfortunate, because it deprives Frances of her only real chance to be a character rather than a plot point – which is ultimately all she is here.

Nobody else is shown dealing with the aftermath, either.  The town has long mistrusted Dr. Adrien because of rumours that he was experimenting on his patients, and a recent spate of missing dogs is shown to be his fault.  An early scene shows a group of boys bothering the doctor by throwing rocks at his house (which made me wonder if toilet paper hadn't been invented yet. According to Wikipedia, it dates to 1857, so there's your Fun Fact for the day). Seeing their worst fears realized really ought to have some effect on the people.  Even if nobody bothers to tell Frances how her miraculous cure was effected, others will surely figure it out and have to weigh up what he achieved versus the crimes he committed to get there.

Yeah, I know: this is a movie about a guy killing people while wearing a dead gorilla.  I'm thinking too hard.

Finally, I want to note some interesting possible connections between The Ape and a number of other movies I've seen.  Both The Ape and The Ape Man appear to have been inspired by the 1932 movie Murders in the Rue Morgue, which also features a gorilla and injections of bodily fluids in the name of mad science, and did not feature very much resemblance to Edgar Allen Poe's story of the same name.  I don't know if these films directly inspired each other, and it's been ages since I saw Rue Morgue... but the combination of plot elements here seems weirdly specific to be something different people came up with independently.  I should watch all three again and see if I notice any more similarities between them.

There are also interesting likenesses between The Ape and another Boris Karloff movie, 1945's The Grave Robber.  The latter is the story of a doctor who needs fresh corpses as part of his research, which culminates in surgery to allow a paralyzed girl to walk again.  The doctor in this film is more a victim than a villain, himself, as he finds that the man he's been paying to rob graves for him is actually murdering the homeless, and he can't expose this criminal without jeopardizing his work and incriminating himself.  It's been a long time since I saw this movie, either (as I mentioned a few weeks ago, I've had some shit going on and I haven't had a lot of time for movies, bad or otherwise), so I can't actually say if it's better than The Ape, but it's definitely less silly.

Anyway, the moral of this story is vaccinate your fucking kids or a gorilla will kill you.

[signaturedish]

A question for ur TF fic. What if when Harry gets turned he's like, younger? When it happens I mean (He is 10 right?) Like, five or something maybe? What would change? How would the bots and cons react? How would Harry react?

Hey you! Sorry that took a hot minute. 

Yeah, Harry’s ten in the fic. 

The way I intended it was that he was clearly ten in his internal monologue right up until he was turned into a robobaby. Then the trauma on top of a completely different set of instincts had him thinking and behaving a good 5-3 years younger than his current age with a gradual upward incline as he got more comfortable and familiar with himself in later chapters. Right now in the narrative, he’s almost back to normal, we’re just waiting on a returning desire for independence which won’t happen until he’s secure in his relationship with Megs.

So to make him five, I think that drop in maturity would come off much more dramatically. He was a pretty independent human ten-year-old, resigned to his treatment as a servant, and capable on his own. A five-year-old Harry would be far newer to his servant status and much more unsure of himself from the getgo- Five-year-olds aren’t built for the kind of independence the Durselys expect from him, we’re right in the middle of those growing pains. 

Then we turn him into a robobaby. 

(I like the age I chose for Harry but sad baby Harry was so cute I made this a little long for more details, excuse my indulgence)

Appearance-wise he wouldn’t change much. He’s already too small and at the youngest growth stage, his internal programming would probably be more toddler-esque with a stronger inclination to cry for attention, a greater need for positive attention, and more automatic behaviors geared toward inciting those things. 

Oh and he keeps his lisp.

The first few days would be a nightmare, like constant crying, deeply distressed at all times, desperately reaching out to the scientists on blind instinct and getting reprimanded for it at every turn. A whole mess, a whole inconsolable mess, the scientists think there’s something fundamentally wrong with him, he’s incoherent past the point of even perceived aggression. 

Then Megatron makes his move. He’s been hearing what sounds like a newspark being tortured for hours and hours and now that he can see that it probably isn’t a sleep paralysis-level nightmare driving him to madness he needs to Handle This ASAP.

First problem- Harry isn’t responding to cool, logical instructions to communicate through comm. He’s way past regular conversation. 

This is eventually resolved when Megatron very clumsily takes the right stabs at comforting him. It takes hours, some sullen silences, panicking, maybe a soft reboot or two, but he does get there. Crooning lullabies, softer sentences, praise when Harry stops crying, Megatron is flying so blind it isn’t even funny but he’s not dumb, he can see it’s working.

The transformers view PA!Harry as a very gifted and mature toddler. This itty bitty little baby can fit so much serious thought and a burgeoning emotional intelligence in it so they try their best to accommodate and not come off terribly condescending. Success varies. 

Younger!Harry acts much truer to his appearance. So in general, how the TF crew thinks of Harry changes very little, but how they respond to him does.

Megatron is as soft as he can possibly be to the point of genuine pain. Harry is so much more emotionally dependant and lost that it’s less easy to drift back into overlord mode around him. You’ll note that Megatron doesn’t have another mode to switch to, just a rusty parental unit protocol set he’s never activated before. Soundwave gets called down immediately, surveillance be damned, he needs someone with caretaking knowledge and he needs them now. 

Bumblebee doesn’t really perceive the difference, he couldn’t clock Harry’s age in any au, he was kinda sure the bot was glitched initially. His genuine confusion when Harry kicks and screams and sobs like a very young child who’s thinnest thread of guidance was just ripped away from him by a lying yellow monster easily comes across as cruelty. The mistrust and fear/hatred Harry develops for him does not mellow for far longer than his stay with the Autobots.

On the bright side his meltdown makes the Autobots come to terms with their find much more quickly. They could hear the distress calls a mile from the dam and had a lot of the freakout there instead. 

Ironhide rips him out of Bumblebee’s cab while Jazz is split between hovering worriedly and tearing the scout to pieces for allowing him to get so worked up. Similar rough aesthetic and coloring to Megatron and an English accent help a great deal in calming Harry down and the rocking and lullabies do the rest. 

Every Autobot has his targeting systems on and a whole lot of automatic aggression coursing through them with the terror and pain of a sparkling still fresh in the air. After Bumblebee is brought to miserable apologies and Bonecrusher is ripped limb from limb they’re still pumped and ready to Throw Down with Megatron. But he just makes that deal to keep Harry safe and assures Harry that he’ll be okay with Optimus and Megs’ll be back soon. 

Harry is still distraught Megatron left him with strangers. But he’s there long enough to form those Autobot attachments, primarily with Ironhide, Ratchet and Jazz.

Ironhide doesn’t put him down much at all, even when Harry tries to hide it, he gets anxious all alone on the cot and much prefers the nook between pauldron and helm to cuddle in and listen to growly war stories and life lessons. He sleeps up there whenever possible too. Ironhide can tell all this and happily allows it, staying stock-still for hours and gently rousing him whenever Harry begins to have a nightmare about the dam.

Ironhide’s perception hasn’t logically changed much, but the way Harry behaves ticks every box to drive him into an overprotective rampage, to the point that humans aren’t allowed within thirty feet of him and even the tiniest whimper has him hovering like three thousand pounds of promised death over his charge. 

They bond the closest, to the point that Ironhide could plausibly replace Megatron as Harry’s imprinted guardian (but he doesn’t).

Jazz and Ratchet share tertiary ‘older brother’ type roles in Harry’s life. Jazz reads to him, plays games with him, and holds him when Ironhide can’t be there. His playful casualness helps keep Harry calm and gets him to open up, but its not something he responds to as successfully. Camaraderie is appreciated but not something an insecure five-year-old always understands.

Jazz gains the most points correcting Optimus’ treatment of him and handling any humans who get into the hanger before Ironhide does something drastic. Thinks that play up his aptitude as a parental figure and devotion to keeping him healthy and safe. 

Ratchet...he really needs Harry’s observational skills and willingness to shoulder some emotional weight in the relationship, unfair or not. Without the ability to deliver the reassurance Ratchet needs, in addition to possessing a much more fragile disposition himself, it can be difficult for Ratchet to interact with Harry. He keeps to himself when Harry doesn’t ask for him or need treatment and they read rejection in each other’s hesitance too often for Harry to pursue the affection fit to burst in Ratchet.

Ratchet would 100% die for him and is right up there with Ironhide as his most aggressive defender, but he isn’t a great source of comfort for Younger!Harry. He wins his points through being the best cuddler, hands down, and praising him most often. Soft moments when neither of them are shy or afraid are where they’re closest.

Optimus is weirdly like Bumblebee here. He has Harry clocked as infant but god knows that that’s supposed to mean. He doesn’t have a mode outside of Prime to switch to for Harry and the stumbling we see in PA is him doing his very best. He’s not dumb, he recognizes that Harry isn’t emotionally mature enough to be spoken to the way he might mistakenly speak to him in PA, but he doesn’t have any other words. There’s a lot of frustrated staring and helpless silences here. 

Jazz tries his best to gently encourage some softer interactions and Ironhide is raring to punish his Prime if he dares misstep with his sparkling charge, tensions stay a little high.

With Soundwave planning Harry’s extraction, it goes off almost without a hitch, no sparklings were bitten in the attempt at least. Thundercracker might actually die depending on the plan. He has the most experience out of the Decepticons with immature and young bots via his own casseticons and a paternal disposition under all his cool logic. So he’s bustling around like an expectant mother, training up all the other Cons in grueling exercises and curriculum to get them up to his standards of child rearing aptitude and childproofing the base.

Megatron really does appreciate some tangible, reliable instructions. He’d appreciate it even more if he wasn’t a little bit threatened by how confident and capable Soundwave is when interacting with Harry. Soundwave quickly becomes the second favorite- almost on par with Ironhide.

Barricade is terrified of Harry in that way twenty-somethings are terrified when married friends give them babies and then leave to do something. This is way too important and delicate for him and someone pleaserescuehimitsgettingcloserohmygod-

Thundercracker is much more cautious handling Harry. We haven’t gotten there yet in PA, but he’s kind of the fun uncle who definitely goads Harry into things partially to get under Meg’s skin. Not so when Harry is more openly vulnerable and clumsy, now we’ve got a little baby chick who needs to stay in his nest and be warm and safe. Gliding will happen much, much later. If ever.

Harry was affected by how the scientists treated him to the point of being intensely shy around friendly, good humans and flatly terrified of anyone else. Megatron hunted down every remaining SS agent with Soundwave’s help to finish the job for that.

Eventually, Harry would feel more secure and comfortable and would start wanting to be on the ground and playing with less parental bots instead of carried everywhere by his guardians, but that recovery is achieved at the Decepticon base after some weeks have passed.

Okay and I think that’s it! Thanks for asking!! I had probably too much fun...

[luckyladylily]

I have glasses. Is that an attempt to make me 'normal' that shouldn't be forced on people? Should children that need glasses but don't want them not get them? And if I get my eyes lasered to not need glasses anymore, is that not good for me? I think there's a big difference between accepting disabilities and glorifying them-

Glasses are a technological assistance device, not an abusive treatment.

A more fitting comparison would be someone forcing you when you are 1 and a half into getting a painful, experimental laser eye surgery that is only partially effective, getting angry at you every time you say you have a hard time seeing, insisting you no longer have bad eyesight even though you do, and punishing you if you ever squint to try to see something better or move to the front of the class so you can read the board without straining your eyes, and forcing you into hours and hours (up to 40 hours a week!) of stressful and traumatizing “therapy” as a toddler, and because of these endless hours of therapy denied the chance to have a normal, happy childhood where you are allowed to play and have fun and develop critical life skills in other areas through normal toddler play and behavior.

As you grow up they prevent you from learning to read braille even though reading printed word is super hard and straining for you - maybe even causes you significant pain. They wont allow you to listen to audio books because “normal kids” don’t need to listen to audio books, we fixed you, you should be normal now! Stop being lazy and ungrateful.

And you never get a break, you have to keep on your toes every moment of every day and perform normalcy or you will be punished. Sometimes your teachers will use you as a public example of how lazy and stupid a bad kid is. You are embarrassed in front of your friends and peers for being different and struggling without proper accommodations.

That is what we are talking about. That’s pretty close to what happened to me growing up, except with ADHD and dyslexia instead of poor eyesight.

[stephenmccull]

No Papers, No Care: Disabled Migrants Seek Help Through Lawsuit, Activism

Desperation led José Luis Hernández to ride atop a speeding train through northern Mexico with hopes of reaching the United States 13 years ago. But he didn’t make it. Slipping off a step above a train coupling, he slid under the steel wheels. In the aftermath, he lost his right arm and leg, and all but one finger on his left hand.

He had left his home village in Honduras for the U.S. “to help my family, because there were no jobs, no opportunities,” he said. Instead, he ended up undergoing a series of surgeries in Mexico before heading home “to the same miserable conditions in my country, but worse off.”

It would be years before he finally made it to the United States. Now, as a 35-year-old living in Los Angeles, Hernández has begun organizing fellow disabled immigrants to fight for the right to health care and other services.

No statistics are available on the number of undocumented disabled immigrants in the United States. But whether in detention, working without papers in the U.S. or awaiting asylum hearings on the Mexican side of the border, undocumented immigrants with disabling conditions are “left without any right to services,” said Monica Espinoza, the coordinator of Hernández’s group, Immigrants With Disabilities.

People granted political or other types of asylum can buy private health insurance through the Affordable Care Act or get public assistance if they qualify. In addition, Medi-Cal, California’s Medicaid program, provides services to people under 26, regardless of immigration status. Those benefits will expand next spring to include income-eligible undocumented people age 50 and up.

“That’s a small victory for us,” said Blanca Angulo, a 60-year-old undocumented immigrant from Mexico now living in Riverside, California. She was a professional dancer and sketch comedian in Mexico City before emigrating to the United States in 1993. At age 46, Angulo was diagnosed with retinitis pigmentosa, a rare genetic disorder that gradually left her blind.

“I was depressed for two years after my diagnosis,” she said — nearly sightless and unemployed, without documents, and struggling to pay for medical visits and expensive eye medication.

The situation is particularly grim for undocumented immigrants with disabilities held in detention centers, said Pilar Gonzalez Morales, a lawyer for the Civil Rights Education and Enforcement Center in Los Angeles.

“They always suffer more because of the lack of care and the lack of accommodations,” she said. Furthermore, “covid has made it harder to get the medical attention that they need.”

Gonzalez Morales is one of the attorneys working on a nationwide class action lawsuit filed by people with disabilities who have been held in U.S. immigration detention facilities. The complaint accuses U.S. Immigration and Customs Enforcement and the Department of Homeland Security of discriminating against the detainees by failing to provide them with adequate mental and physical health care. The 15 plaintiffs named in the lawsuit, which is set for trial in April, have conditions ranging from bipolar disorder to paralysis, as well as deafness or blindness. They are not seeking monetary damages but demand the U.S. government improve care for those in its custody, such as by providing wheelchairs or American Sign Language interpreters, and refraining from prolonged segregation of people with disabilities.

Most of the plaintiffs have been released or deported. José Baca Hernández, now living in Santa Ana, California, is one of them.

Brought to Orange County as a toddler, Baca has no memory of Cuernavaca, the Mexican city where he was born. But his lack of legal status in the U.S. has overshadowed his efforts to get the care he needs since being blinded by a gunshot six years ago. Baca declined to describe the circumstances of his injury but has filed for a special visa provided to crime victims.

ICE detained Baca shortly after his injury, and he spent five years in detention. An eye doctor saw Baca once during that time, he says; he relied on other detainees to read him information on his medical care and immigration case. Mostly, he was alone in a cell with little to do.

“I had a book on tape,” said Baca. “That was pretty much it.”

According to the lawsuit, treatment and care for disabilities are practically nil in government detention centers, said Rosa Lee Bichell, a fellow with Disability Rights Advocates, one of the groups that filed the case.

Her clients say that “unless you are writhing or fainted on the floor, it’s nearly impossible to get any kind of medical care related to disabilities,” she said.

“There is kind of a void in the immigration advocacy landscape that doesn’t directly focus on addressing the needs of people with disabilities,” said Munmeeth Soni, litigation and advocacy director at the Immigrant Defenders Law Center in Los Angeles. “It’s a population that I think has really gone overlooked.”

ICE and Homeland Security did not respond to requests for comment on the lawsuit.

Covid-19 poses a particular threat to people with disabilities who are detained by ICE. On Aug. 25, for example, 1,089 of the 25,000-plus people in ICE facilities were under isolation or observation for the virus.

In an interim ruling, the federal judge hearing Baca’s class action lawsuit this summer ordered ICE to offer vaccination to all detained immigrants who have chronic medical conditions or disabilities or are 55 or older. The Biden administration appealed the order on Aug. 23.

Hernández, who lost his limbs in the train accident, was among the hundreds of thousands of Central American immigrants who annually ride north through Mexico atop the trains, known collectively as “La Bestia,” or “the Beast,” according to the Migration Policy Institute. Injuries are common on La Bestia. And more than 500 deaths have been reported in Mexico since 2014 among people seeking to enter the U.S.

Hernández, who finally made it to the U.S. in 2015, was granted humanitarian asylum after spending two months in a detention center in Texas but quickly realized there was little support for people with his disadvantages.

In 2019, with the help of a local church, he formed the Immigrants With Disabilities group, which tries to hold regular gatherings for its 40-plus members, though the pandemic has made meetups difficult. Hernández is the only person in the group with legal papers and health benefits, he said.

Angulo has found solace in connecting with others in the group. “We encourage each other,” she said. “We feel less alone.”

She volunteers as a guide for people recently diagnosed with blindness at the Braille Institute, teaching them how to cook, shower and groom themselves in pursuit of self-sufficiency. Angulo would like to have a job but said she lacks opportunities.

“I want to work. I’m capable,” she said. “But people don’t want to take a chance on me. They see me as a risk.”

She’s also wary of any organization that offers medical or financial assistance to undocumented immigrants. “They ask for all my information and, in the end, they say I don’t qualify,” she said. “Being blind and without papers makes me feel especially vulnerable.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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No Papers, No Care: Disabled Migrants Seek Help Through Lawsuit, Activism published first on https://smartdrinkingweb.weebly.com/

[ourimpavidheroine]

could you do “Where do you think you’re going” for Mieli and her husband?

Tupilek watched out the window of the cab as the neighborhood gradually changed. He’d been told that the clinic wasn’t in the worst of the city’s neighborhoods; it wasn’t exactly nice, either. He could see the entrance to the bridge looming in the near distance, the one that was just called First Bridge, apparently. He still hadn’t gotten all of them straight yet, and there was another one being built to the south of the city, this one to accommodate the gradual overspill from what used to be the downtown area before the spirit portal had arrived and had wiped most of it out.

The city was very big. Bigger than he’d expected, and he’d expected pretty big.

He’d only arrived the night before, traveling north on Master Iskani’s eldest sister’s ship, The Tiger Seal. Captain Tanka had met up with her other sister Yumi when they docked and she’d taken him with her, telling him he could stay in the back room of her dojo until he found a place of his own. He knew she was the middle Hou-Ting princess’s biological mother; Master Iskani had told him it wasn’t a secret, that the princess and her family acknowledged it. Yumi was a bluff, friendly woman, no-nonsense in a way he’d recognized from Master Iskani as well as Captain Tanka. He’d liked her immediately.

He’d meant to contact Natsiq to tell her that he’d arrived, but no one had answered the phone at the clinic. He figured it might be just as easy to show up in person. He’d brought with him a fair amount of supplies from down south, including the dried seaweed Natsiq had specifically requested. He’d left most of it back at the dojo, though, figuring they’d know better than he how to transport all of it.

“The Bridge Clinic, right? This is it here.” The cabbie jerked his thumb as he pulled over. He fumbled with the unfamiliar money before handing it over, picking up the box he’d brought and getting out. He took in the rather battered looking door, the single small window to the side dirty and cracked. He frowned. Quite a few people were milling outside, most of them poorly dressed; one of them, a young girl, was coughing so hard her entire body was shaking with it. He went to push the door open and a man grabbed at his arm.

“You ain’t takin’ no cuts in line, I been here since it opened!”

“I’m an employee,” he said.

“You a healer?” The man peered suspiciously at him; his traditional clothes in blues and browns, boots to the knee, his dark hair with its severe widow’s peak caught back at his nape before being clubbed into a thick tail that fell to the middle of his shoulders, wrapped with the beaded leather clasp his grandmother had given him for his tenth birthday.

“Not a very good one, I’m afraid.” He smiled. “I’m not really here for that. Excuse me.” He moved past him and pushed open the door, feeling resistance as it shoved into someone who promptly cursed at him. The small lobby beyond was crammed full of people; coughing, bleeding, complaining or silent with suffering, sitting on the floor or standing, unwashed for the most part. He lifted the box above his head and started to wade through to the door at the other end of the lobby, doing his best not to step on anyone. He managed to get through and tried the doorknob; it was locked.

“Where do you think you’re going?” This voice had a completely different accent; he turned to see a tall woman frowning at him. He blinked in surprise; she resembled Master Iskani so much that for a shocked moment he’d thought she’d somehow appeared here. On second look it wasn’t her, of course; this woman was considerably younger, for one thing, and her eyes were the dark blue of gentians instead of the master’s much lighter turquoise. She was dressed in a simple tunic and trousers, covered with some sort of a thick pinafore, her curling hair pinned neatly back, bare of jewelry or any other ornamentation. There was no mistaking her for a patient, however.

“You’re Princess Meili? I’m Tupilek, from the Southern Water Tribe. Natsiq hired me?” He shifted the box as a grimy hand reached for it. “Ah, please don’t touch, these are medical supplies.” He smiled down at the boy who owned the hand. “No food, I’m sorry.” The boy lost interest at that and wandered off.

The princess’s frown cleared. “Yes, of course. I’m sorry, I didn’t mean to snap. We’re swamped,” she gestured around her, “as you can see. Natsiq is with a patient and so is Rohan, you can meet him later. I don’t mean to be rude, but…” She gestured again.

He nodded politely. “Of course. At least let me take this box back for you. It’s got some supplies Natsiq asked for.”

“Thanks. Give me a moment, we have to keep it locked or else they’ll take anything that isn’t nailed down.” She turned from him then, going back to a woman who was holding a sodden cloth to her bleeding arm, speaking to her quietly before motioning her along.

After she let him in he dropped the box off and found Natsiq; a quick hello and a promise she’d talk to him later, and he was waved at by a man about her age, tattooed arrows gleaming a bright blue on his shaved head, hands and forearms. Healer Rohan the airbender, of course. The back room had been transformed into several smaller rooms, separated by tall screens, neat and clean. The storeroom, however, was a disaster, and he blew out a long breath when he contemplated what it would take to get it into good working order.

Natsiq hadn’t been kidding when she said they needed someone to run the clinic for them. He borrowed her key and went back into the lobby just in time to stop a fight between two women, each accusing the other of trying to get in first. Meanwhile, there was an old man he hadn’t seen on the floor, his eyes closed, his breathing irregular, overlooked in all the chaos.

He took a deep breath and got his pen ready, centering a clipboard he’d found in the back in his hands. “Ladies and gentlemen! If I could have your attention, please.” A few people looked at him, but not many. No help for it, then. “OY! Quiet down now,” he bellowed, using the voice his own Dad would use to call all of them in from across the tundra. It worked; the room quieted down. He smiled. “Thanks, folks. Here’s what we’re going to do. You’re going to come up to me, one at a time, tell me your name and what’s wrong. That way I can tell which healer you need to see and in what order you need to see them. Emergencies need to go first, and so do children.”

“That ain’t fair! I got here first!” One of the women whose fight he’d just broken up shoved her way belligerently to the front.

“Madam, do you know what the fee is for this clinic?” He met her eyes.

“What you sayin’? There ain’t no fee!”

“That is correct. That means that when any of you come here, you are being treated by healers who are doing what they are doing for little or no money. No one is making a profit here. Because of this, the clinic is understaffed. The healers are doing their very best to treat you. In order to do that, they need to know what your complaint is so that they can try to help as many people as possible in the quickest time possible. To facilitate that they need to see patients in order of importance, not in order of who arrived when.”

The woman sniffed at this. “You want to say that in plain words for me to understand?”

“This clinic, going forward, will take patients based on how badly they need treatment instead of first come first served. It will make the queues go quicker and make sure everyone gets the best care possible.” He smiled at her. “I know everyone wants that.”

She grunted at this. “Well, put me first on your list there, then.”

“What’s your name and why are you here today?”

“The name’s Ming and I got me a fierce itch in my lady parts.”

“Yer lucky yer lady parts ain’t fallen off yet!” hollered some wit from near the door, and after Ming sent him a rude sign with her fingers there were widespread snickers from around the room. He caught himself from smiling just in time, writing down her name and complaint before looking up.

“Next, please.”

He got their names and their ailments: a cough that was bringing up blood (that one was next for Master Rohan), a child who’d been feverish for over a week now (Natsiq was good with fevers, he knew), a heavily pregnant woman who, with fear in her eyes, told him that she hadn’t felt the baby move once that day. She he escorted back immediately, taking her straight to the princess, who had her lay down, water already in her hands.

Once he’d gotten all of their names he started in with the things he knew he could handle himself. He cleaned the infection out of a nasty graze and packed it with salve and gauze, telling the man to return in two days to be checked. Next was a toddler, harassed mother in tow, who had a marble up her nose, gently eased out with some water into her delighted brother’s hands. The sudden sound of a baby crying from behind the door hushed the waiting room before people nudged each other and nodded, smiling and even clapping a little. He closed his eyes briefly and let out a relieved breath. “A blessing on the baby and mother,” he murmured, and the old woman sitting next to him nodded her head with approval.

The princess came out about a half hour later, looking slightly weary. She opened her mouth and then closed it, gazing about the room in surprise. People were sitting, for the most part, thanks to a few of the relatively healthy patients whom he’d asked to help fetch some empty crates he’d been informed were sitting abandoned in the back alley. “The baby and mother?” he asked, getting her attention, and she nodded. “Fine. Thankfully. She needs to rest and recover, but I can see someone else in the interim.”

He glanced down at his clipboard. “Wang.” Three people looked up expectantly from around the room. “Ah, I mean Wang with the broken foot.” The Wang in question stood with help from his son, balancing on one leg. “Let me give you a hand.” He turned a stern glance back towards the room. “I’ll be right back. There won’t be any problems, correct?”

“You go on, then.” Ming With The Itch stood up and smacked a fist into her hand. “I’ll keep order out here.”

“Thank you, Ming.”

“You got it, Boss.”

He put his arm around Wang, helping the man to hop back to an empty table. “This is Wang, he fell off a ladder yesterday. I did a quick check; the foot appears to be broken. I did what I could for the swelling but I left the setting of it into your far more capable hands.”

The princess blinked. “Oh. Thank you.” She stared at him for a moment before shaking herself slightly and reaching for the large pitcher of water. He walked around to where the new mother lay, baby in her arms.

“Hello,” he said softly. “Can I bring you anything? Some water?”

“Some water would be good,” she said, not taking her eyes away from her child. He fetched her a glass, helping her to steady it as she drank. “Thank you, sir.”

“You rest,” he replied. “Is there anyone we can fetch for you?”

She met his eyes then. “My husband, he’s working on the bridge. He don’t know where I am.”

“What’s his name?”

“Big Li.”

“Well, I’ve got a bridge worker out there who’s got a knock to the head that needs seeing. I’ll see if he knows your husband. If he does we can ask him to take him a message, how’s that?”

“Thank you sir, thank you.”

He patted her gently on the shoulder. “We’ll figure it out, don’t worry. Your job is to rest now.”

He went back out to the lobby to speak to the bridge worker, who did know Big Li and promised to pass along the message. Taking a deep breath he turned to smile at a man who had just walked in the door, his jaw swollen and discolored. “Well, that looks painful. Can you manage to tell me your name and what happened?”

Towards the end of the day he started to turn away those that could wait until tomorrow; none of them were particularly happy about it but he was firm. “Emergencies only, the clinic is getting ready to close, please return tomorrow,” he repeated, Ming With The Itch standing behind him, turning a baleful glare at those who started to argue. “Ming, are you still here?”

“Figured you might need some help. You ain’t all that big.”

He laughed at that. “Well thanks, Ming. You got everything taken care of?”

“Yeah, that airbender gave me somethin’ to spread around down there, smells like somethin’ died but he says it works.” She shrugged. “Dunno yet, I’ll letcha know.”

“You do that, then.” He nodded, looking around the lobby. “Well, I think we’re done for today. Thanks for your assistance, Ming.” She clapped him on the back, nearly sending him sprawling.

“Take care, Boss. See ya tomorrow, mebbe.” She sucked on her teeth for a minute. “I ain’t got no work at the present, it might be that I could come down and do some cleanin’ here. Make this waitin’ room a little nicer to sit in.” She shrugged. “Couldn’t hurt. Alright, I’m outta here.” Out the door she went, and he locked it behind her, going into the back. Big Li had arrived a few minutes earlier; the princess was giving him some yuan.

“I can’t take it, I just can’t,” he said, holding the baby in his arms.

“She can’t walk home,” the princess said. “She needs to take a cab. I’ve called one. Please take it and put her right to bed. If there is any extra you can keep it.”

“I’ll pay you back,” he said, and the princess opened her mouth to argue, but Tupilek cut her off.

“Big Li, yes?” At the man’s nod he smiled. “It’s not necessary to repay the yuan. What you could do, however, would be to help me in the lobby. I’d like to add some simple benches for people to sit on, something a little sturdier than the crates, maybe add a desk for me to sit at. Is that something you think you could do? When you have time, that is.”

“I could do that,” the man replied eagerly. “You can count on me, sir.” He stuck his hand out and Tupilek shook it.

“It’s settled, then. If you would take your wife, I can take your son here. I believe the cab is waiting.”

The man carefully scooped his wife up and followed him out the door, putting her gently inside the cab before taking the baby from his arms. “Thank you, sir. Thank you.”

He nodded and waved them off before walking back into the door, straight into a hug from Natsiq, who laughed as she thumped his back.

“What did I tell you, Meili? I told you he’d be perfect!”

“It’s very good to meet you,” Rohan said, bowing. “Spirits, but today was quite a day. I’m sorry I didn’t have a chance to really say hello earlier.”

“It was a little chaotic here,” he agreed, bowing in return. “I do hope you’ll tell me how I can best help you.”

The princess snorted, an unexpected sound. “I think you’re already off to a good start.”

“Where are you staying?” Natsiq slung an arm around his shoulder.

“Well, Master Iskani’s sister Yumi is letting me stay at her dojo until I find a place.” He laughed. “Which makes it sound like I know where to find a flat. I don’t.”

Rohan put his hands on his hips, looking around the lobby. “You ought to come with me to the Island.” At Tupilek’s puzzled look he clarified. “The Air Nation temple, I mean. We’ve room and plenty. I take my air bison to and from work every day, you could ride with me, save you from a commute. I wouldn’t recommend anywhere in this neighborhood to live in.”

Natsiq shook her head. “No, safe enough for the residents, but you’re not one of them. They’d know you for an outsider and treat you like one.”

“You keep your air bison here?” He tried desperately to figure out where an air bison would be lurking. He understood they were very large.

Rohan grinned. “No, there’s no room. I call him with a special whistle, he can hear it from miles away, he stays on the Island while I’m here. So what do you say?”

He ran a hand across his mouth. “I…well. I’ll admit I wasn’t looking forward to sleeping on a cot in the middle of a storeroom. It’s doable though. You’re sure taking me home wouldn’t be an imposition?”

“It wouldn’t, trust me. My parents have an open door policy, and in any case I’m sure my Dad would love to hear all about the goings on down south. We can swing by Yumi’s, pick up your things, drop off Natsiq and then drop off Meili before heading over.”

“I actually have quite a few boxes at the dojo, supplies and such.”

“We can take those as well, it’s fine. Exit - my air bison - can manage them without a problem.”

“You’re quiet tonight,” Natsiq said, putting a hand to the princess’s shoulder. “You okay?”

“You were a very big help,” the princess said, looking at him. “Thank you. I don’t think I quite realized how much we needed someone like you.”

“I hope I can be of use,” he replied. “It’s why I came.” He smiled at her and she returned it, finally. She had a beautiful smile.

There was a resounding bellow from above the roof; Rohan gestured theatrically. “Our ride is here. Shall we?”

They walked out and he locked the door behind them, doing his best not to cringe in surprise at the enormous beast calmly disrupting traffic as it landed in the middle of the street. He’d need to get another set of keys made and take inventory of the storeroom, find someone to do regular cleaning as well. Maybe Ming would be up for it? What was the budget for that, anyhow? As he hauled himself up to the air bison’s saddle with the leather straps Rohan considerately threw down, he grinned at the marble-wielding brother and his friends who were daring each other to dash forward and pet Exit. “Keep those marbles away from your sister, now,” he called down, and waved.

[mrlongkgraves]

Your child and chronic pain: How to ‘dial down’ the agony

PHOTO: ADOBE STOCK

Sheer panic. It’s all I can remember.

Out of the blue, while enjoying his morning snack one day, my toddler started having seizures. And they didn’t stop. It was terrifying. He was admitted to the intensive care unit. Between seizures he was scared, flailing on the hospital bed, totally out of control. I wanted desperately to help soothe him but didn’t know quite what to do. My first intuition was to distract him. I remember grabbing a jungle pop-up book out of my diaper bag and springing the pictures open right in front of his face to block out all the doctors scurrying about. I made loud roaring sounds like a tiger to drown out all the scary medical noise. It didn’t help.

After a few moments, his nurse gently tapped me on the shoulder. “I wonder if you might instead try singing him a gentle lullaby?” she asked.

When I think back on this moment from more than 10 years ago, I can still vividly recall the feeling of helplessness. I remember wanting to do something to make my son better. And I remember that my first intuition — my excited attempt to distract with a book — turned out not to be the best choice. Indeed, the lullaby worked much better. Why hadn’t I thought of trying that?

I’m working with kids who are in constant pain and with parents who are panicking over their child’s suffering. I know how they feel.

Although my son was having seizures, the distress I felt as a parent in this situation has come to inform my work as a pediatric pain psychologist. In the counterintuitive world of chronic pain where I work, I often feel like the nurse in the ICU when I gently suggest to families that they try a new approach.

It’s not easy. I’m working with kids who are in constant pain and with parents who are panicking over their child’s suffering. I know how they feel.

My first goal is to help parents understand that psychological treatments are among the best tools to reduce chronic pain, regardless of what is causing the pain. Research shows that the impact of many different types of pain — including headache, abdominal pain, nerve pain and musculoskeletal pain — can be lessened with interventions that are rooted in psychology. While pain itself is not just a psychological problem, scientific studies spanning more than two decades consistently find that kids recover better when they are engaged in a multidisciplinary recovery plan that includes evidence-based psychological care.

To understand this, parents and kids need education about how the nervous system works: namely, that all pain sensation is actually processed in the brain, not in the tissues of the body. This means we can use brain-based strategies to “dial down” pain sensitivity, much like you might use a dimmer on a lamp to turn down a light. Understanding this fundamental concept opens the doors to teaching a variety of evidence-based, mind-body strategies — such as deep breathing, guided imagery and mindfulness — that reduce pain as well as pain-related difficulties, such as poor sleep and anxiety.

In addition to learning how to dial down pain sensitivity, psychologically based strategies are directed toward modifying how we think about pain.

It’s fairly easy to understand that ongoing pain is a scary experience for kids, but most people are surprised to learn that this innate fear of pain actually amplifies the pain signal leading to more physical discomfort. The antidote to this lies in retraining the brain to think about pain differently. For example, when kids shift from thinking, “This pain is unbearable,” to thinking, “Today is a tough day,” they almost immediately have less fear, and in turn begin to feel better physically.

Another target of psychological care, the structured behavioral approach to help kids return to activity, can also be confusing for children and parents, at least initially. As an early step in treatment, kids are often encouraged to get back to their daily routines even when pain is present. Some worry this could exacerbate pain. Our mind and body, however, are equipped with the capacity to rewire and adapt; through successive exposures to typical activity, we can often retrain the brain and body to move without fear — and eventually without pain.

Families often ask me how this array of child-centered psychology skills fit together in a pain recovery plan. To understand this, consider one of the most common hurdles that kids with pain must tackle: getting caught up in school. It’s common for a child with pain to fall behind in school. Getting back on track can be difficult. A pain psychologist can intervene by teaching a child mind-body relaxation skills to reduce pain sensitivity, advocating for supportive school-based accommodations, developing a stepwise plan for increased school activity (such as attendance or work completion), and monitoring progress by assessing pain triggers and alleviating factors along the way.

Intended to be warm, supportive and productive, the habit of checking in about pain many times throughout the day is one of the first things I advise parents to stop.

Notably, the psychology of pediatric pain also extends directly to parents. Though chronic pain affects 1 in 5 children, parents are seldom taught how to help manage symptoms. For example, when parents routinely ask a child with chronic pain the simple question, “How is your pain today?” or even, “How are you feeling?” they are inadvertently increasing a child’s focus on pain and this too can amplify the sensation of pain. Intended to be warm, supportive and productive, the habit of checking in about pain many times throughout the day is one of the first things I advise parents to stop.

Unfortunately, a family can find it tricky to access the targeted psychological intervention for pediatric chronic pain management, collectively included in a type of psychotherapy called cognitive behavioral therapy or CBT. There aren’t enough pediatric pain psychologists to go around, there can be insurance barriers and there are often long waits for service.

So, I began providing one-day CBT workshops for teens with pain and their parents. I had three simple goals:

Increase access to care for children and parents.

Help families gain a deeper understanding of how chronic pain cycles can be reversed.

Empower kids and parents in the recovery process by teaching some of the evidence-based CBT skills that can help to reduce pain and improve function.

Additionally, within these group-based workshops, I wanted teens and parents to recognize that they were not alone in their struggle. Connecting to others who have a shared experience and learning from peers who have successfully returned to their full lives after dealing with chronic pain are essential for instilling hope and promoting engagement with these evidence-based skills. Now in their seventh year, these pain-management workshops have been replicated by more than a dozen children’s hospitals in the United States and Canada and have served as a first step in treatment for many families who have a child with chronic pain.

The good news is I can see that some families are starting to think about the psychology of pain in a new way.

I recall how panicky I felt when my child was sick. And I often place myself in the shoes of the parents with whom I work. What would it feel like as a parent to have a child who hurts every single day? What parents need to know is that with targeted skills and strategies, kids and parents can shift from feeling helpless to feeling hopeful, and from barely getting through the day to getting back to their full lives.

The good news is I can see that some families are starting to think about the psychology of pain in a new way.

I recently met a 9-year-old girl who had pain for four months in her wrist. From a functioning standpoint, she was doing pretty well and our team doctor didn’t have much to offer. Still, her parents were concerned and they turned to me. “She seems so sensitive to pain. We’re not sure how to help,” they said.

In that instant, I recalled my feelings in the ICU with my agitated son. I remember how grateful I was to learn how to best help and know that all parents desperately need this kind of support. When I started to sing that gentle lullaby to my son, he almost immediately began to relax. And seeing that he was calm, I was able to relax a bit, too.

I wasn’t focused on what this meant to me as a pediatric psychologist at the time, but this memory serves to remind me still: parents and children are truly in this together. While the treatment for chronic pediatric pain is best informed by a multidisciplinary approach — often including medications and physical therapy — it’s essential that parents and kids learn the evidence-based interventions that psychology offers.

With these important skills in place, many kids and parents may begin to relax and to chart the path forward.

About our blogger: Rachael Coakley, PhD, is a pediatric pain psychologist at Boston Children’s Hospital and an assistant professor at Harvard Medical School. She is the author of “When Your Child Hurts” and launched The Comfort Ability, a CBT-based program that provides one-day workshops on pediatric chronic pain management.

    Learn more about the Pain Treatment Center.

The post Your child and chronic pain: How to ‘dial down’ the agony appeared first on Thriving Blog.

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[coleendeohanna]

Critical Analysis #3: Chipped!

Getting pampered is fun, but there is a hint of politics when it comes to it. I’ve seen every time I enter my favorite nail salon, and it never fails to escape my attention and interest.

Look, I’m not one to get into others’ business, but when I hear something that seems about off, it doesn’t leave my head. Oftentimes when I go to the salon to get something done, I ask for the exact same person. The “suki,” as they call it. And each time I meet her, she has a different story. It’s not a story about her life (well, there are those times she mentions her toddler son), but of the other customers that come in -- her other suki. This is the same for the woman who does my mom’s nails, who are usually seated right next to us. Every conversation is heard, minding the quiet and serene sounds of the shop’s background music. 

There are three things I always notice when I come in: gender, ethnicity, and class. The distinctions are so frequent and so frankly obvious that I might as well predict everyone’s future in that salon. 

Gender

This one is common. Salons are usually full of women of all ages, and the presence of a man does not make much buzz in terms of overpowering the women. The salon is where women know exactly what they want without a man having to dictate otherwise. There are men who also care for their nails, and they are easily accommodated, but they don’t talk as much as women. They don’t sit around to make chika. Instead, they sit down, get some cleaning in, and leave right after. In common occasions, they get a nap in while waiting for their wives or girlfriends. That’s another thing I’ve mentally noted; I have never seen a man go in alone. It always either with his girlfriend or wife, sometimes mother or sister. Is it because they do not think of going without a female figure present, or is it because they’re shy to go? Either way, the ratio has always been small and unequal, even in other countries.

Ethnicity

I have been a regular long enough to witness foreigners come in for mani-pedis. I would not say that they are treated differently, but there is some adjustment that occurs to accommodate them. Code-switching is common, but it is mostly done by the receptionist who has to note the services they’re getting. Those who actually serve them rarely speak to tell stories or gossip, and they try their best to ask for their customer’s preference. It’s a common find in the Philippines, especially in my home province of Pampanga where Clark Air Base flourished with Americans. 

Class

The middle and upper class rule the salon. They are the empowered, and it’s not just because the prices are a bit high, but also because there is the need for extra income. There is the need to tip the employees.

Sometimes I witness people make inquiries at the front desk but immediately leave afterward. That’s when my suki makes a comment on the usual case: they probably can’t afford it. This is especially relevant to students who come in and never come back. They’re young, they rely on their parents, and their allowance probably doesn’t cover beauty treatments. It makes sense, but everyone else who are regulars; well, they look the same. Not in the way that screams we all wear pearls and have a driver, but the aura reflects one of the educated. You can hear people conversing in English, mostly children to their parents, which suggests their enrollment in decent schools. Rarely is the regional dialect spoken, and if it is, it’s coming from people who are not so-called millennials. I prefer English, but I code-switch to Filipino when talking to the employees. 

Culture as it is seen

Filipinos really have a way of choosing their narratives, and being in the salon made me realize that the identity from “the others” is important. It may not always seem correct, but it does add to a person’s identity as a whole. I can’t speak for the employees who notice so much, but do not defend. Gossip goes around quickly, but they can only tell the story. Their opinions are different and are made for a different setting, and they do not dare risk the loss of regular customers. 

[astridbee]

Why do you get frustrated with yourself?

Everyone of us has a feature about us that we despise whether we want to admit it or not. It can be a personality or a physical feature. And we hate it so much but we can’t change despite our best efforts.

It’s not a secret that I hate how I have extreme anxiety and depression but there is another feature about myself that I despise: my eyes.

I have an entire list of why I hate my eyes.

1. I have brown eyes (thanks dad) instead of pretty green ones like my mom.

2. I can’t see further than 5ft (a little more than 1.5 meters) in front of me without my glasses.

3. I have astigmatism which means I have a weird eye shape that distorts what I see without my glasses.

4. While there are contacts available for astigmatism, it’s more expensive and I hate how it feels. The contacts are made so that it can move on the eye to accommodate the weird shape and let me tell you, it’s not fun when it doesn’t move the right way.

5. My eyes are extremely sensitive to light. Blue light (found in natural light and screen light) is the worse and it sometimes hurts. Imagine being in college having to do research and type papers while your computer screen hurts your eyes and gives you migraines. The lowest brightness setting is still to bright sometimes and I need another level between the lowest and when my screen goes dark. (Kudos to macs for easily adjustable brightness settings.) I’ve tried to change the color of my computer to reduce the blue light but it’s too dark and leads me to my next issue.

6. My eyes fair worse with dark than it does with light. I can barely distinguish anything that is dark. The computer screen thing? It distorts the colors and makes everything too similar for my eyes to focus on what I need to. My night vision is non-existent. Dusk and dawn are the worse times of say because it’s dark enough to limit my vision but it’s also bright enough to be annoying. My eyes dilate weird so other cars’ headlights are problematic at times… which is why I don’t leave the house after dark unless absolutely necessary and I sure as hell won’t go anywhere unfamiliar alone.

7. I am clumsy because I have limited peripheral vision, especially top and bottom peripherals. Doorknobs and step stools are my worst enemies next to blue light and darkness. I’ve tripped over boxes, stools, shopping carts, and toddlers (which is why small children hate me). I’ve run into walls, doors, and even parked cars while walking. It’s embarrassing and other people make such a big deal out of it when they think I got hurt.

8. Oh, did you think I was done? Nope. I have cataracts forming in my eyes. Not a big deal… if you’re older but I’m 22 (my sis is 20 and she has it worse than me). Cataract removal surgery is common amd it’s mostly safe but c'mon who wants to hear that they’ll need eye surgery in a few years?

9. Issues 5-8 are due to the fact that I have retinitis pigmentosa (RP). It’s a rare genetic retinal disorder… which means it’s untreatable at the moment. There’s not a surgery to fix my eyes and it’ll keep getting worse. My peripherals are deteriorating at an alarming rate but I shouldn’t go completely blind. The doctor said it’s rare and if it does happen, I should be old and close to death anyways. My sister on the other hand… complete blindness is still up in the air. She’s already legally blind and can’t get a drivers license. Other possible symptom of RP is hearing loss but neither of us has shown those signs. On the brightside, there’s an experimental treatment for a retinal disorder similar to RP in the works so RP treatment is possible in the future. According to the RP specialist, RP varies so much that it’s hard to hone in on the cause to find a treatment. Like my sis and I. She more blind than me but I am more sensitive to blue light and darkness.

10. Because of everything, eye doctor appointments costs me thousands every year and insurance doesn’t cover it. I have visit my local ophthalmologist, a local retinal specialist, sometimes the retinal center in Chicago, and an RP specialist 2 hours south of where I live. Once it gets bad enough to lose my drivers license, I’ll have to start eye therapy.

So yeah, I despise my eyes and I can’t do anything to make it better.