Disability Talk

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Nervous #EhlersDanlosSyndrome #ChronicFatigue #ChronicPain #AutonomicDysfunction #Depression #Wheelchair #Subluxation #DisabilityTalk

Hi Mighties,

It is 2 am and I am awake and nervous.

Today I have an apointment with my immunologist to find out what kind of inflammatory syndrom I have.

And I get advise about wheelchairs in a mobility aid shop. Guess I need a light chair, and just want to hire(or rent) it to try out whether it is good for me.

My hEDS got much worse within some months. Now I am once again back from hospital cause of a seizure, but I also got a real bad flare. I am just able to get around with bandages and crutches. So I am fed up. I decided it is time for my first wheelchair.

I feel scared But. I got so much inputs from other zebras here and on youtube and from wheelchairusers which are friends or collegues that I feel strong and am convinced I can go for it.

My next aim: going to the zoo by wheelchair to sketch zebras 🦓🦓

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Snap, Crackle, Pop!

Though my health has incrementally improvements these past few months, I still remain for the better of each day, bedbound.

This week has been my first lo-fi birthday since my health worsened where “living large” consisted of a walk with the dogs, followed by microwave mug cake and a movie with my better half. It was everything I could have wanted from the day, and I decided to spoil myself today with a posy of daffodils to look at for the hours I’m confined to bed.

I am always strangely fascinated by the odd minutiae we take for granted when we are so occupied with the hastened pace of life that we accept as societal norms. Like that if we aren’t busy, then we seemingly aren’t living our best life all the time, except for ‘self care’ which is often equally demanding of our time and energy.

The influencer crowd have done a great job of appropriating the concept, with many ways to hawk ‘self care’ products to us where they wax lyrical about the benefits of quartz facial rollers and the like—which in my experience, get used (mostly in false hope) for a few months, then it becomes forgotten and relegated to the back of our drawers. But fear not—for there is another influencer waiting in the wings to energetically urge you to overhaul your living space and spend time removing all the items from our homes that no longer spark joy!

If for no other reason; being hospitalised and so poisoned by my thyroid medication I could barely achieve the walks to the loo, makes me happy to have been forcibly removed from the zeitgeist hamster wheel of consumption where you get to spend a lot of time and effort doing things that don’t actually matter to you, and now focusing only on the things that matter most to me from now on.

And today I have discovered a simple joy that escaped my notice throughout all the springs past where I’ve purchased cheerful little daffodils. Today as I sat in my room I have witnessed several snaps, crackles and pops as they began to unravel in the water and bust open their tight little petals like they’re teasing me with their blooming arrival 🥰

I hate many thing about being sick, but finally starting to see life from a renewed perspective and a greater appreciation of the littlest of things, is something that I could never regret 🌼

What things have you begun to notice that escaped your attention before?

#DistractMe #MyCondition #Thoughts #Flowers #justforfun #Fun #ChronicFatigue #bedbound #MyalgicEncephalomyelitis #InvisibleIllness #DisabilityTalk

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Disability—What do you say when people ask where you’re working?

I am on disability payments from the government for my mental health and physical health conditions. I’ve become very shut in the past few years and have stopped talking to all of my friends, but when we catch up, I am so ashamed and embarrassed to say that I’m not working. I say that I’m on disabilty, and they usually don’t ask any details. But they do start asking what is wrong with me... Sometimes I just say I don’t really know, but that I’m seeing doctors. I hate this because I feel like it seems like I’m faking it when I say that... I just feel like it’s kind of none of their business anyway. My biggest issue is just that I don’t want people to know that it is money specifically from the government. I’m tempted to start lying and tell them that I’m working again at my old job. I hate lying, though. I wish there was something simple to say. Is there something simple to say? How do you explain in a way that doesn’t give away too much, but doesn’t sound like you’re faking it or making excuses. How do you tell them that it’s none of heir business without coming off as rude? #Disability #DisabilityTalk #Anxiety #Depression #MyalgicEncephalomyelitis


How do I get an#awesomethemighty , t-shirt?

#FMS #CFS #ChronicPain #ChronicIllness #Disability #DisabilityTalk #DisabilityAdvocacy #mentalhealthchallenges #ClinicalDepression #PanicDisorder #PeripheralNeuropathy #InvisibleDisability #SupportOthers #CheckInWithMe #TheMightyTakeaway

Hey there everyone. I have been ill my whole life with a myriad of symptoms of illnesses, injuries, and unexplainable pain.
Finally I was diagnosed with a genetic disorder in my mid thirties and 5 years later fms and cfs. And at that same time, I had a massive flare of ??? PAIN?Extreme discomfort, throughout my body? And it has taken me 5 years of extremely difficult challenges and sometimes crushing mistakes. To get me here, sharing this. On this day I feel good after therapy and want to encourage other folks, to keep it going.
Most days are not like this. They are full of pain that I am continuously working through and that is exhaustive and depressing.
But through it all, I want


I was 15 or 16 when Trayvon Martian was killed. His death sparked a catalyst, an almost dimino like effect. After his death it was like every other month another black or brown person was a victim of supremacy or police brutality. Each instance would spark national conversations about the “talk”. The conversation every black parent has with their kid about how to act when you get stopped by police or how not attract them at all. The “talk” serves as rules for survival with rules such as don’t wear a hoodie, keep your hands visible, don’t come off as aggressive and countless others. With each instance of death and violence sparking over things so trivial the rules would change, but it has reached a point where there are no rules. So my question for today is what are the rules for disabled poc? What do you do when you’re stoped by police and you’re not able to comply to a demand quickly due to your disability? How to you convey to an officer that you have a disability? #Disability #DisabilityTalk #CerebralPalsy #Physicaldisability


What do you want the education system to know?

I’m a mental health therapist, and I have a disability. I work in the education system, and am working to bring attention to ableism within that system. I’m giving a presentation next week. Is there anything you would like teachers, professors, and/or others who work in academia to know? #Disability #MentalHealth #Ableism #School #iep #DisabilityTalk #College #HighSchool #ElementarySchool #graduateschool


Let’s Talk About Terms

How do you guys feel about the terms “differently abled,” “handicapable” or similar? As a person with a disability I always feel weird when I hear those terms, because I feel like it’s minimizing and erases aspects of disability. Having a disability is okay, and to me those terms kind of make it seem like it’s not, and that people without a disability use terms like that to make themselves more comfortable. I don’t know if that’s just me or if other people feel the same way?? #Disability #LearningDisabilities #DisabilityTalk


Hi need ideas for Earning income #unemployed #DisabilityTalk #CerebralPalsy

Hi I've never been employed.(Work experience Program I did get paid,but piecework. It was  lame)
I've always wanted to work from home.

Because 1. Don't have to worry about being fired if transportation is late,I can't get through the snow in my wheelchair. 2.Have no real job training or skills. 3. I don't work well under pressure as I 'm not speedy when I do anything( except chugging beverages).
Yeah, I know that is not leaving much for opportunity- Just thought I'd ask?
 Anybody in a similar circumstance that has any suggestions for at home income ideas that I've not thought of?   Thanks

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What are your reactions to this proposed 'Disability Simulation' bill?

Colorado State University's student senate is proposing a bill that would support 'disability simulation' events. This would encourage students without disabilities to use wheelchairs or blindfolds during an event so they can understand what it's like to live with a disability.

Research supports that these events do not promote inclusion. They often reinforce a dangerous stigma that people with disabilities are somehow less capable and that we deserve pity or praise for simply doing our everyday tasks.

Does simply sitting in a wheelchair or being blindfolded make someone understand our experiences with disability? What about the social/emotional aspects that come with a disability that cannot be simulated?

Please share your thoughts on disability simulation events. Should this bill be passed? I want to hear YOUR voice and YOUR opinions.

A link to an article on the proposed bill: collegian.com/2020/01/category-news-ascsu-discusses-potentia...

#Disability #Inclusion #yourvoice #DisabilityTalk #DisabilityAdvocacy #InvisibleDisability #MobilityAids #Blindness #DeafCommunity #College

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