My joints can’t even hold themselves together what makes you think I can hold my life together

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@still--floating
My joints can’t even hold themselves together what makes you think I can hold my life together
Mentoring for disabled folks interested in medicine
Lex says:
Hi all! I wanted to share an initiative started by a good friend of mine in med school to help support college and high school students with disabilities who are interested in medicine. It entails 1:1 mentoring by current medical students and is open to anyone, even those outside the US!
Disabled folks are extremely underrepresented in medicine and have so much personal experience on the patient side of the equation experience that means we are able to empathize and connect with patients in a really deep and profound way that makes us especially suited for it. The issue is we face a lot of barriers, not just from medical school admissions offices and premed counselors, but also from loved ones who question if we would be able to “handle” it. Disabled students can be extremely successful in medicine and if you’d be interested in learning more, you should check out their twitter:
https://twitter.com/Disabled_Docs
I am personally mentoring and have loved getting to know my mentee and you and also welcome to ask me any questions you have directly!
I do not like comparing suffering. We can both be in pain and both be valid even if someone perceived one pain worse than the other. We are a social species and crave comfort and it’s not an Olympic battle for “who is suffering the worst,” and only that person gets care. No, we care for one another. We sympathize, we empathize, we are kind to each other
If you are an autistic blog or/and chronic illness blog, reblog/like so I can follow you
Would love to connect with like minded bloggers, so feel free to message me if any of you are interested in connecting 😊
Is “Ablenormativity” a Thing? It Should Be.
I keep thinking about cisnormativity, heteronormativity, and all the other ways the dominant cultural narrative frames success for marginalized people as the closest possible emulation of that narrative.
I’m talking about the idea that it’s better to always be struggling and suffering on the inside as long as on the outside you LOOK as much like an abled person as possible.
Ablenormativity is not actually caring about disabled people, because you only see us as valid when we show you how we can be “just like you!”
Ablenormativity is applauding the person with a physical disability who walks, even though it causes pain and fatigue and limits their freedom to do the things they want to do, that would be easier with the use of a mobility aid.
Ablenormativity is applauding the autistic person who makes eye contact and doesn’t stim, even though forcing themself to fit that mold is uncomfortable and causes them stress that takes energy away from the things important to them.
Ablenormativity is applauding the intellectually disabled person who works a job, any job, for any wage, and considering that fulfillment without ever asking the person what they actually WANT.
Ablenormativity is ignoring or deriding the disabled people who choose to use adaptive equipment *because it makes life easier*, not necessarily because they are completely unable to function without it; who have to choose between working a conventional job and having a life outside of work and choose the latter; who have goals for themselves that don’t include blending in with abled people whatever it takes.
This idea that the appearance of abledness is the ideal we should all be striving for is just as damaging as the messages from the dominant culture narrative to other marginalized groups that they should assimilate and be just like “normal” people. And I choose to resist this.
Yes!
Like those videos you see if disabled people forcing themselves to walk down the aisle at their wedding to impress their other half?
Like a guy I know in my town who worked for 1/8th the minimum wage (which is illegal)?!
Those videos make me so sad. When I got married? We had a sit-down wedding. My wife and I sat on a pretty bench to say our vows so we could be the same height.
Disabled people, if you’re gonna marry someone? Marry someone who meets you at your level instead of expecting you to meet them at theirs.
this book is worth more than a dozen restaurants that grow their own microgreens on the roof
It costs around $16 (US), and has some good reviews! Some web links:
Amazon
Book Depository
Blackwell’s
Barnes and Noble
Paperback Swap
[ID: a hand showing a book to the camera with the title “Accessbile Gardening for People with Physical Disabilities: A Guide to Methods, Tools, and Plants” by Janeen R. Adil end ID]
Spoon Theory - my way of explaining to people who Just Don’t Understand
Most of us are familiar with the basics of Spoon Theory:
You are given X amount of spoons per day.
Each task takes a given amount of spoons.
You can borrow spoons from the next day but you can’t regain them.
Even when people I talk to understand this, they struggle to fully grasp the impact. So I made this up to explain better. I was telling this to my mom and she said it helped her understand more. So hopefully you can use it too!
Every time I do an activity, spoons are dipped into creamy peanut butter, and are very hard to clean and cannot be used again.
The spoons cannot be “washed” unless I am asleep or relaxing. They just will remain peanut butter coated and unusable.
I can only wash that days allotment of spoons while I sleep.
So, if I was forced to use tomorrow’s spoons I will start tomorrow with some dirty peanut butter goop spoons. Eventually if I keep borrowing spoons I will have only peanut butter spoons and no clean ones I can use. So I am FORCED to “wash” them and it will take ALL day, maybe longer.
Every things takes spoons - some more than others. Some things take a lot of spoons but are more enjoyable and worth it to me. Somethings are required but unenjoyable and take a lot of spoons. Some things take very little spoons. But every spoon is dipped in gooey peanut butter and cannot be washed until I’m relaxed or asleep.
It’s okay if your new baseline of pain is worse
It’s okay if you don’t feel stronger
There are things you can’t always control
And if you can’t, don’t blame yourself
Just take this day by day
You are still valued even when you feel like this
“True friendship takes us by the hand and reminds us we are not alone on the journey.”
— Unknown
Every time I research yet another female health condition, only to find that there is “no known cause” or “no known treatment or cure”, my heart breaks a little bit more. Women’s health is so largely ignored in research and in practice.
lumpyrug:
estebanwaseaten:
cianm1301:
livebloggingmydescentintomadness:
I do take some small, cold, bitter satisfaction in one thing, and that’s the fact that Trump is going to be absolutely fucking miserable for the next four years.
He’s an entertainer and an attention whore, not a public servant. He wants to be on TV and in front of crowds, not actually working a difficult, grueling, stressful job he can’t opt out of. He’s going to have to sit through SO many meetings, be forced to read SO many briefings, get shoehorned into serious business all day every day, without crowds to perform for, and he’s going to hate Every. Single. Minute.
And then, when he doesn’t deliver on his promises, when he doesn’t build the wall or create jobs or make people rich, when it becomes clear how incompetent and buffoonish he is, the country and all his supporters will turn on him. They’re gonna start blaming him for everything, and those crowds that cheered for him are going to start booing. He’ll be humiliated at every turn, and leave office with the lowest approval rating ever, and he’ll be universally despised.
Because if he’d lost to Hillary, he would have played the martyr forever, called everything rigged, and had a cushy gig on Fox News complaining every day about how he would have done it better. But now he’s going to have to actually WORK, he’s going to be forced to deal with RESPONSIBILITIES, while surrounded by people who hate him and don’t respect him, people vastly more intelligent and competent than him, and he will be exposed as a loser. And then, we’ll fire him. He’ll go down as the worst president in history. And he’ll have no one to blame but himself.
I know this isn’t much against the fear of what’s going to happen, but friends, hear me. We are going to make Donald Trump’s life a living nightmare, and I for one take immense pleasure from that.
Does this mean “Thanks, Trump” is going to be the new “Thanks, Obama”?
He’s also going to learn that, even with Republican majorities in Congress, and even with all that work he will have to presumably put into the job, being the President still isn’t going to be like being a CEO (recall: George W. Bush had a majority in both houses for his first six years, Obama had a majority in both for his first two years).
The things a President wants to get done are not going to happen quickly or easily, if at all. Passing important legislation is complicated and boring and lengthy. Even signed legislation can take a while to be enacted and is then always subject to appeals and challenges (recall the Affordable Care Act’s individual mandate ultimately having to go before the Supreme Court).
The Constitution will not allow for a lot of Trump’s more horrific ideas to ever get close to reality (this ACLU piece written before the election breaks it down better than I ever could). His Supreme Court nominee has to be approved. His cabinet members have to be approved. Just about everything needs to be approved. And even with majorities in Congress, that’s far from a swift guarantee.
There are checks and balances. We lived through 8 years of Bush (including those first six I mention), followed by the economy collapsing; there are more vigilant eyes and ears watching now than there have ever been. The likelihood of a Trump administration getting away with shit without a drawn-out, bloody fight is slim. Especially when you remember that he’s facing a civil RICO trial at the end of this month plus numerous more lawsuits that have yet to be settled. Especially when you remember that he has no law degree, no political science degree, and has never held a political office of any kind. Especially when you remember that he lost the popular vote. His cabinet and staff will not be filled with the best and brightest because he alienated so many of them, even in his own party.
And most importantly, one or both of the House and the Senate could be flipped in 2018.
We’re all scared and worried and rightfully so. And the people who voted for Trump are as much a daily threat as Trump himself could hope to be. But this President’s only got two years before his legislative legs can be cut off. Two years from right now.
Learn who your representatives are, at every level. Figure out how to get in touch with them and get in touch with them, repeatedly. Relentlessly. It doesn’t matter if they’re Republican or Democrat or Independent. You don’t have to wait for some terrible Trumpish idea to get going in Congress – you can write to them about restoring the Voting Rights Act or preserving the Affordable Care Act or protecting LGBTQ rights or fighting climate change right now. These people do not have a job without you. You’re younger than them. The future matters more to you. I’ve seen the working life of a Congressman up close and let me tell you: you can reach them (surprisingly easily, actually). You can get through to them. You can put a face to these issues and you never let them forget it. Be relentless. Be memorable. If they ignore you or forget you, you let everybody know about it. We have the platforms to easily and quickly tell others. Let relevant activist groups know. Let the whole fucking world know.
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for.” - President Obama
This is the post. This is the one giving me the most hope. This is the one turning most of my sadness (not all, lord knows I will never be rid of all of the sad) in to vindictiveness, into bitter action, into spite. Into action.
We’re mourning and we’re scared. But we’re not defeated.
Trans Lifeline: a hotline staffed by trans people for trans people.
US: (877) 565-8860
Canada: (877) 330-6366
#NotMyPresident
The electoral college does not vote until December 19th. We have 40 days.
What does this mean?
Right now, the presidential election results are only a PROJECTION of the election outcome. They are PRELIMINARY RESULTS. A candidate still needs to earn 270 electoral votes to win. Hillary Clinton won the popular vote, which means that more than 50% of the voters wanted her for president. The electoral college shouldn’t guarantee an override of the public’s opinion– and it doesn’t have to.
There are 21 states that do NOT restrict which candidate the electors vote for. Out of these 21, Hillary lost the following:
As you can see, these states are worth 166 electoral votes. As it currently stands, Hillary Clinton is projected to receive 232 votes. Trump is projected to win 306. This means that 37 votes need to be taken away from Trump to bring him down to 269. Hillary Clinton needs 38 votes ADDED to win 270. These electoral voters can also abstain, which means that they can refuse to vote for either candidate. If 37 of the voters within these states abstain then no candidate will have reached the required 270. In this case, the vote would be taken to the House.
Trump won Pennsylvania, a state that typically votes blue, by less than 100,000 votes. While it is highly unlikely to get all 20 electoral voters to cross party lines and vote democrat, it also isn’t impossible to convince a few of them to be “faithless electors.” We only need to convince 38 out of the 166. That is 23%. There are SIXTEEN states we need to focus our attention on.
A move like this would be unprecedented. However, as we all saw on November 8th, odds don’t guarantee reality. Trump had a less than 20% winning, yet given the circumstances, enough people came together and made it happen. We can make this happen.
Ask yourself this: What do we have left to lose? We can stay complacent and accept that this country will be run by a racist, sexist, islamophobic, homophobic, ablest bigot, or we can at least try.
How?
SPREAD THE WORD. Trend #NotMyPresident to let people know that we do not accept being led by a man who does not care about our wellbeing. Email your professors, email the dean of your colleges. The last thing a university wants is negative press. Millenials can take a stand, but that doesn’t mean we have to be the only ones. Church-led events helped bring a lot of disillusioned voters to the polls. Spread the word in any way possible, whether it be on Facebook, Twitter, Tumblr, or even in person. Stage a peaceful protest. Hand out flyers. Let the people around you know that you don’t accept this man as your leader when he won’t even accept you as a citizen with your designated rights.
These 166 people need to face the consequences of electing this man.
Do this for the people who couldn’t vote. Do this for the people who live in the very real fear of being deported. Do this for the people who will have to face the rise in hate crimes. Do this for the people who have a very real possibility of losing their rights. Do this for the people who will no longer afford necessities.
How a middle school teacher in DC teaches his students about the election. 👏🏻👏🏻👏🏻
please look out for your disabled friends please please please i’m barely seeing any posts about them but a trump presidency is so fucking harmful to those who don’t conform to society’s ideals of ‘able-bodied’ and for all those who rely upon healthcare and please please PLEASE, in all your posts about people who are going to suffer under this presidency (hint: everyone), just please be aware of them
Under a Trump presidency, millions of disabled Americans could lose their access to medical care, life saving medication, the benefits they use to afford food, and the programs that provide them with shelter. Please keep disabled Americans in your hearts and minds. Please don’t forget about us.
Hillary Clinton on the next generation of American women.
In this devastating time, I’m choosing to focus on the outpouring of love for the vulnerable in our country. I hope you all get through the day okay.