Month: October 2014

~ Sephira ~ Leave a comment

trabasack:

Congrats to Joanna Grace who has written an instruction book for creating and telling sensory stories for children with special education needs or learning disabilities.

Sensory stories use sensory cues such as sounds, tastes, smells and things to hold and feel during the story to help connect to the experience and the message of the tale.

We supported her kickstarter to write the first stories and we are so glad to hear about the book which will help parents and teachers create their own story experiences.

More about the book and it’s launch here.

http://sensoryplaytray.com/sensory-stories-children-teens-book/

“No one will miss me”, “I’m better off dead”

~ Sephira ~ Leave a comment

the-real-seebs:

after-crisis:

When I worked at a non-profit that handled suicide prevention, I had access to the donation records. Each month, a specific man donated 15$ to our organization. It was like clockwork.. same day, same man, he had been doing this for over 4 years. It always seemed odd to me but I never questioned it… until I saw a note attached one month. “For Noah- Dad”

his donation was once his child’s allowance.

I can promise you, they would miss you for the rest of their lives.

Wow.

That is a really, really, powerful statement about human nature.

~ Sephira ~ Leave a comment

Though nearly 20 percent of Americans have physical or mental disabilities, studies show that less than 20 percent of medical schools teach their students how to talk with disabled patients about their needs.

More than half of medical school deans report that their students aren’t competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don’t require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Doctors’ Ignorance Stands In The Way Of Care For The Disabled (via disabilityhistory)

Great article!

(via chronic-illness-support)

abled people who act like medical professionals are magical omniscient gods need to read this

(via marshmallowknight)

~ Sephira ~ Leave a comment

The thing about an anxiety disorder is that you know it is stupid. You know with all your heart that it wasn’t a big deal and that it should roll off of you. But that is where the disorder kicks in; Suddenly the small thing is very big and it keeps growing in your head, flooding your chest, and trying to escape from under your skin. You know with all of your heart that you’re being ridiculous and you hate every minute of it. The fact that many people don’t recognize or have patience for your illness only makes everything worse.

Ten years of experience (via punkasspoet)

I once had a therapist tell me that having an anxiety disorder is like having a faulty alarm system wired up in your brain — instead of going off just when there’s danger (like it would for somebody without an anxiety disorder), it goes off all the time, over little things that don’t actually warrant an anxious response at all. It’s like one of those asshole smoke detectors that everyone’s dealt with at some point or another, the ones that go off whenever you turn on the oven or try to cook something on the stove — you can yell “OH MY GOD, I’M JUST BOILING WATER” all you want, but the stupid thing is going to blare on undeterred. That’s what having an anxiety disorder is like: it’s the smoke detector, and you’re the person on the ground yelling “SHUT UP, SHUT UP, THERE ISN’T ANY FUCKING FIRE.”

Under normal circumstances I don’t talk about my mental health stuff on the internet much — out of anxiety, actually, more than anything else — but I wanted to chime in here because I think this is something people really don’t understand about anxiety disorders. Friends: we know it’s irrational. We know we need to calm down, that things aren’t as bad as we think they are, that our reactions are making things worse than they need to be, that it’s all in our heads. We know. It’s what makes it all so incredibly infuriating, because in life you can just — you know, smack the smoke detector with a broom or take the batteries out or something. An anxiety disorder doesn’t work like that, though god, I wish it did; it requires years of work and active effort and (for some of us) medication to dial down our reactions, even when we know, right down to our bones, that our reactions are wrong.

If you’ve ever read that when someone is having an anxiety attack, it’s not helpful to say “Calm down” or “Stop panicking” or shit like that: this is why. We are saying that crap in our heads already, only we are saying it louder than you, and with more frustration and self-loathing, because we have been trying without success to calm down and stop panicking for the balance of our lives. 

I know it can be exasperating to deal with someone with anxiety — boy, do I. I deal with an anxious personality every waking minute of every single day, and let me tell you there are times I want to smack myself with a broom, take out my batteries, and let my whole fucking house burn down. But the thing is, if you have someone in your life with anxiety and their shit is bugging the hell out of you, you have an option at your disposal that they don’t: you can walk away. And if you’re someone who gets frustrated by other people’s anxiety, who can’t be patient, whose very nature compels them to point out that it’s not a big deal and we need to calm down and we’re making it more than it is — that’s okay, everyone has shit they can’t deal with, but use that option. Walk away. Tune it out. Don’t pile on, because that’s actually so counterproductive to the goal of getting the calm, rational person you know out from beneath their anxiety. The more you say the things we’re already thinking (this is stupid, just shut up already, calm down, this isn’t a big deal, why can’t you calm down), the more we become convinced everything in our heads is true, and the longer it takes us to shut it down. 

As always, the best way to be helpful to someone with any kind of mental illness is to ask them, ideally during a time when they are calm and in control: what can I do, what do you need, what should I avoid doing, is there anything that helps. But short of that, I can’t tell you how helpful it is to have people in my life that I know aren’t going to echo back at me the shit I’m already yelling at myself. So: try not to do that to people. That’s all we’re asking. Try not to. 

(via gyzym)

How to Survive a Health Crisis or Chronic Illness in Marriage | Reader’s Digest

~ Sephira ~ Leave a comment

A medical crisis or lifelong health condition rewrites the script of your relationship. Your roles may change drastically. Your future doesn’t look the way you’d hoped. Sex, money, work, chores, fun — they’re all different now. “Managing the way an illness affects your marriage is just as important as keeping up with medications and doctor’s appointments and treatments,” Dr. Sotile says.

“Today, most illnesses aren’t short events. They’re processes that go on and on and on, possibly for the rest of your lives. And both of you will need different things at different times in the process. Couples who take responsibility for this can build stronger, closer marriages despite the presence of illness.”

Read more

How to Survive a Health Crisis or Chronic Illness in Marriage | Reader’s Digest

~ Sephira ~ Leave a comment

coballion:

uglylilmonster:

Since I haven’t seen any posts about it on Tumblr, I figured I’d make the post myself! #heardwhilstdisabled is a trending hashtag on twitter, has been on-and-off for awhile obviously, and it’s about the common, casual microagressions the disabled of all stripes have to deal with. It’s UK- and AU-based primarily from the looks of it but I would think it applies to most disabled people – I certainly know I’ve heard my share of this kind of ableism. Here’s more tweets (source is The Indepedant):

@DamonLord #heardwhilstdisabled “that’s so sad. That baby will grow up with a blind father. We should call Social Services on them” About me and my son

@Quinonostante #HeardWhilstDisabled: “mental illness could be eradicated though right?” Me: “how’d you mean?” The reply: “By sterilising people”

@Imbecillis #heardwhilstdisabled Person: “You don’t look disabled…” Me: “I’m sorry I didn’t realise the neon sign was compulsory these days.”

@RedRubyGem #heardwhilstdisabled My housebound daughter was told if she didn’t attend interview at job centre her benefits would be stopped

@lauraevans311 Learning about DMD [muscular dystrophy] – fellow med student: “If they’re only going to live that long, what’s the point in educating them?”#heardwhiledisabled

@major___tom ‘I don’t want to vaccinate my kids in case they end up autistic like you’ #heardwhiledisabled

@TwinsMa #Heardwhiledisabled “If you’d stop coddling him, he’d quit being so clingy.”– says a former pediatrician to me about my autistic son

@claireOT told I’m “a bloody disabled” by a taxi driver when refusing to pay an extra £2 to carry my scooter #heardwhiledisabled

@thebeardlessone “You won’t make any friends if you keep making noises” #heardwhiledisabled (Actually, he’s the only person to diss my tourettes to my face)

@latentexistence #HeardWhileDisabled While visiting psychiatrist for suicidal thoughts, in a wheelchair: “You just need to exercise more.”

@usherchic2 #heardwhiledisabled so do you just tell your guide dog the plan for the day in the morning & he sorts it all out? Me:……

@Geeketteuk “Hitler was wrong about the Jews but right about people like you” (thanks for not being anti-semitic !) #heardwhilstdisabled

@Fire_Rosa #heardwhilstdisabled At the Dentist with Husband and Carer, receptionist” What home do you come from?* my own?

@lizmcternan #heardwhilstdisabled at a buffet, me in wheelchair, helping blind friend choose: ‘You people take up so much room’

@PottsMcG #heardwhilstdisabled “Don’t stare at her, she’s not all there” as said about my 9 year old sister in law, who has down’s syndrome. Vile

@AvoidedDrowning Frequently been told off for using a walking stick because I’m “too young to need it” too #heardwhilstdisabled

@hypatia “you people shouldn’t use rush hour transport, it’s for people going to work”. (me in suit with backpack) #heardwhilstdisabled

@MatthewJFowler #heardwhilstdisabled. Your not albino you haven’t got red eyes

@sparklygoth #heardwhilstdisabled ‘You don’t look deaf.’ & that looks like what exactly?

@badfanfic “They’ll diagnose anyone with autism these days” – my doctor #heardwhilstdisabled

@CarrieBeckwith #heardwhilstdisabled “we don’t have a ramp cos we don’t get disabled customers” – prob cos they can’t get into our shop!

@Wheelchair_Dave #HeardWhilstDisabled Someone asked wife “Did you know when you married him 15 years ago, he may have an accident & become disabled”

@WTBDavidG #heardwhilstdisabled Office fire warden 3 “You’re so disabled we need you to wait before using stairs, but not so disabled u need an evac plan”

@Becca_Boot #heardwhilstdisabled bus driver lowering ramp “i don’t have to do this, im going out of my way to help you, you better behave on here”

@VictoriaMWright Man: “she.. (gestures at me) makes me wanna (makes vomitting sound)” #heardwhilstdisabled

@WelshWallace #HeardWhilstDisabled police officer to me after being mugged – your not going to be much help as your blind & not able to give a description

@MelG1804 When refused access to restaurant with guide dog, relative said they shouldn’t have to take dogs if they don’t want to. #heardwhilstdisabled

@touretteshero #heardwhilstdisabled I know what would cure you – an exorcism #Tourettes

@Beakboo #heardwhilstdisabled My Irish mother, when she saw an obviously disabled person, in a loud whisper “would you look at that poor creature”

@theeternal “I thought autism was only in children.”#heardwhilstdisabled

@ScottTweed #HeardWhilstDisabled my personal favourite was “if you’re mum had seen a medium when pregnant then you wouldn’t of been born disabled”

@cvonruhland #heardwhilstdisabled Elderly landlady: ‘Why do disabled people need ‘rights’? They’re disabled, aren’t they.’ Gobsmacked

@urbanhippie21 #HeardWhilstDisabled hubby, in a swanky Shoreditch bar – is there a disabled loo? Them – no. There’s no demand for one. Him – I’m demanding

@supermattachine #heardwhilstdisabled “Hahahaha it’s so funny when you freak out when I come up behind you”

This is absolutely disgusting

~ Sephira ~ Leave a comment

ms-demeanor:

I made a comic about what it feels like (to me) to cope with having an invisible illness and the judgements and accusations that sometimes come with invisible illnesses.

I did it in green ‘cause that’s the color of the Celiac Awareness ribbon Celiac is one of the “imaginary” “all in your head” “stupid” “hypochondriac” invisible illnesses I live with.

So here. Be nice to people in general, because it’s the right thing to do, but if you can’t at least do that then please don’t be an asshole when someone tells you that they have Lupus or Celiac or Fibromyalgia or any of the other things that we live with every day that you can’t see on the surface.

Cheers.