Welcome to Earth, baby child! Are you a born into a [[middle class, white|white]] family or a [[low income, black|black]] family? Oh, cool! Your born in the United States, in a major city, where they have air conditioning, public transportation, a growing economy, and lots of fast food. Your parents, Margaret and John, own a one story home. You're their first child, so happy to see you!
You're a couple years old. You've recently had trouble crawling + breathing. Your parents are concerned. They take you to see an expert doctor at the hospital nearby. He runs tests (a whole bunch of them, actually)
[[Check out what the doctor says |diagnosis]]Well, welcome to Earth. It's getting hot here, but we are confident that modern medicine and biotech will save us...those that can afford it, that is.
Your mama lives in a subsidized housing situation. She had you by herself. After watching you grow for a few months, she really wants you to see the doctor, since you appear to be developing differently than her other kids did.
It took a little while for her to be able to take time off work, but your mama finally can take you to visit the hospital. It takes an hour and a half to get there by public transport. After waiting in line a while, the nurse comes in. She gets the doc to run some tests (a whole bunch of them, actually)
[[Check out what the doctor says |diagnosis2]]Hmm. Turns out you have an [[autoimmune disorder]]
Cool turns out you have a physical disability. You'll need a wheelchair. You will need help getting out of bed, brushing your teeth, getting dressed, to name a few. [[What to do |Disability]]Okay, so you need a wheelchair, breathing help (especially at night), and maybe help in moving this ferkakte house (all the steps!)
Medical care is expensive.
Okay
[[You Got This]]
[[You don't got this]][[Love your attitude|Go In For Treatment]]Crap. This sucks. You're seven years old, have been in and out of hospitals a whole bunch, and don't know what the future holds. The doctors express dismay, society says you're a burden, but your parents love you.
Your parents ask you to weigh in on whether or not you want treatment the next time you get an infection of some sort.
[[Go In For Treatment]]
[[Do not go in for Treatment]]
[[You're seven years old! Leave decision making to your parentals]]Awesome! The doctors love to see you, you've made a friend with the nurse and a few other little girls, who are also in for treatment. Being in bed all day sucks and some movements are really painful, but your parents bring you pink frosted cupcakes, you recently discovered how awesome reading is, and your trachea implant helps you breathe!
[[Get out of treatment]] Whew! Life goes fast. You've worked hard to study and make friends in school. Being in a wheelchair allows you to move around much more easily than before.
The only issue is they "forgot" to install ramp/ accessible bathroom/ wide doorways/ in many places around the city/ some areas of your school///why
Your mom thinks you'll never date, but you really really hope she's wrong.
You've worked really hard and you've gotten into your first and second choice colleges!
One of them is far away, and you're thinking of moving out of home.
[[Move out of home]]
[[Live at home]]College is great! It's awesome that you got a partial scholarship, and your parents can afford to pay the rest.
You're meeting people you actually like!
There's a sweet dude down the block/ next dorm over who likes you! Like like likes you
verry good
[[Proceed into dating]]
[[Focus on Your Studies]]
Living at home has it's ups and downs, but you're getting the care you need to continue living and studying.
Good news is, the guy from your Calc class.. totally has the hots for you
[[Proceed into dating]] Julianna Snow was a little girl with an aggressive form of Charcot-Marie-Tooth Disease. At around four years old, she was asked by her parents if she wanted to go to heaven or the hospital the next time she got sick. She responded heaven. Though she lived for another 18 months with hospice care, she died in her own home.
A couple of smart, disabled people got together to gather wisdom and advice from other disabled people to affirm life. The project, called Dear Julianna, continues to this day (July 3, 2017) and can light up life for those dealing with disability.
Disability does not equal terminal illness.
[[Read the letters]]"Doctors told my mom that I wouldn't make it to 18. They even told her, "What's the point of giving him medication? He's just going to die anyways!" Years later, after a heart transplant and becoming ventilator dependant, I showed them! What have I done with my life, you ask? Well, I have graduated high school with honors and went to prom. I have loved. I have sung with a band. I go to college. I go to concerts. I have been to many place, on cruises, and have met some of the most incredible people. Without medical intervention, there is no way I could have done all these amazing things."
-Jeff Paradee, Jr.
[[Read another letter]]
[[Read about Julianna |Julianna]]
[[Go In For Treatment]]Your parents found this group that collects letters entitled Dear Julianna.. They want to show it to you!
Who is [[Julianna]]?
[[Read the letters]]"Without a trach, I would not be writing you a letter today, and I am so grateful that my parents gave me this opportunity! Now, almost 50 years after my parents were told that I would not live to three, I live independently, have a full time job, have a girlfriend, and help people with neuromuscular conditions almost every day."
-T.K Small, 50
[[Read another letter|Read another Letter 2]]
[[Read about Julianna |Julianna]]
[[Go In For Treatment]]"My name is Diane. I have a neuromuscular disability and I wear a breathing mask too. The mask I wear in the day covers my nose and the one I wear at night covers my nose and mouth. When I was your age, my parents were told that I would not live past the age of 12, but they didn't believe them and I just had my 62nd birthday!
-Diane
[[Read another letter|Read another Letter 3]]
[[Read about Julianna |Julianna]]
[[Go In For Treatment]]"I don't have to go to the hospital as much as I did when I was little. In fact, do you want to know where I get to go every single day? To school! That's right, I'm a teacher! I have twenty-one eight and nine year old boys and girls in my class. We have so much fun together and they get to help me do a lot of things in the classroom that I can't do. I can't open a marker cap. I can't turn on the lights. There are sometimes when I can't even move my arms. I can't, I can't, I can't! You know what though? My "I can't-s" have never ever stopped me from having a very happy life. Because when the people around you love you and care about you, they're going to help. Just like the students who help me in my classroom."
-Angela Wrigglesworth
[[Read about Julianna |Julianna]]
[[Go In For Treatment]]Dodged a bullet with that one.
In our society, disability can be seen as a terminal illness.
It's not.
[[Go In For Treatment]]So, la! Some guys are assholes, some guys are good, some guys aren't guys, some dudes aren't dudes.
College is a wonderful time
Did you know gender is a social construction?? Like, also, not tied to sexuality??
Totally. Anyway, after much trial and error, the chemistry with this one cutie queerdo is totally awesome.
And they want to do the thing! Sweet
[[Do the thing]]
[[Be safe! Go for testing]]
[[Focus on Your Studies]]
You've rallied a bunch of rad, sweet fellow beings, who make sure that the holes in your institutional care don't keep you from succeeding.
You also met a cutie...
[[Proceed into dating]]
[[Focus on Your Studies]] That was fun! I really think you should go for testing now
[[Be safe! Go for testing]] Alright, your doctor... well, it's a good thing he's free, ie university sponsored
Turns out the office is barely accessible to you, (who makes doorways so small?) and this doctor (working in public service for how many years???) apparently does not believe that you are having sex. He doesn't have an aid to help lift you onto the table, and you clearly can't do it yourself.
You leave without getting tested.
[[Go see a different doctor]]
[[Write an angry letter]]
Continue to [[Have unprotected sex]]Cool.
After calling several different offices (non-University sponsored doctors, now >:O) you find a wonderful, disabled person friendly office. The staff help you get on to the table, the female doc does a pap smear, takes a urine sample, checks for STIs.
She finds out...
you have chlamydia!
[[Take a pill]]
Well, I bet you feel a bit better. But did that do anything?
[[Post on Social Media]]At the risk of contracting innumerable diseases, you vote for fucking.
That doctor didn't understand, but who has the time to find someone who does?
[[Contract a disease]]
[[Miraculously avoid the things]]Crap.
Some diseases are fatal.
You get HPV.
After years of not getting tested, the HPV develops into cancer of the cervix.
You die.
[[Sexual health resource page]]
[[Back to Start|Start]]
Wow, good luck you have!
But really though, take care of yourself. You could get pregnant. Or contract an infection
This website has some nice tips
http://www.sexualityanddisability.org/having-sex/keeping-it-safe/
[[Back to Start |Start]]
[[Get in touch with like minded People!]]
There, now Facebook, your 120 instagram followers, and the people on your Twitter know whatsupp.
[[Get in touch with like minded People!|online support community]] Hey, wow! There's a whole community of people like you, advocating for disability rights.
Here's the website of one awesome, sex positive organization:
sinsinvalid.org
There's something nasty, looming on the future.
[[What's the deal with Trump cuts?]]
[[Focus on Your Studies]]
Your mama loves you. She is a little worried, though.
Medicaid covers some of your care costs, but your mama will spend a lot of her time and energy caring for you. Which she's happy to, but she also needs to pay the bills
[[Mom gets fired]]
Alright! With the help of your support network, you've figured out your way through undergrad.
Do you want to go to grad school?
[[If only I could]]Baby child, you can do anything
Find an [[online support community]]
Alright. She's been late a few too many times (your bus didn't come! you were up all night! You had an emergency hospital visit!)
and her workplace has given her the boot.
Well, now she's on EI and able to care for you full time.
You keep going, healthy and strong in your own particular way.
[[Movin thru life]]Doctor's visits happen with regularity.
You qualify for Medicaid, though it takes shit tons of paperwork and doctors notes to get things going.
You've been able to have a helpful trachea implant done- it allows you to breathe as much as you need- yay!
As you get older, you start taking The Lift, which is government transportation for disabled folks.
It requires day ahead scheduling and hours of waiting time. The tediousness!
Your mama loves you so much.
[[How is school?]]
You've applied to college
You don't know if you'll get in.
There is a community college
Where maybe you could [[stay at home]] and study
But lets say you get in somewhere else. Is [[moving out]] an option for you?You definitely, [[no way, can afford to go]] to college.
But maybe, if you [[apply for all of the grants, cross your fingers]]?
and you can live with your mama, who is still on EI.
Okay. You've tried a few different websites/ personalities, and like that you can work for home. No more hours waiting for the Lift!
The money isn't great, or easy in coming. But slowly, you start to pull in some cash.
You had "the talk" about your work with your mom, and it takes her a while but she's grateful for the help.
Some of your SSI benefits may go out the window soon...
[[Continue with life]]
Go hang out with your [[online support community]]
[[What's the deal with Trump cuts?]]
[[Read about poverty and disability]] There's no money in this sh**
but you really like telling stories
you can make the games pretty easy
getting your story out there
feels [[empowering |Get in touch with like minded People!]]
https://twinery.org/
[[Continue with life]]http://www.npr.org/sections/health-shots/2015/07/23/424990474/why-disability-and-poverty-still-go-hand-in-hand-25-years-after-landmark-law
Why does NPR have the best articles?
Check out this one, too
https://talkpoverty.org/2014/09/19/disability-cause-consequence-poverty/
Back to [[Start]]
Back to [[stay at home]] Oh hello, lovely!!
Check these places out
http://www.disabilities-r-us.com/
http://www.healthfulchat.org/physical-disability-mobility-issues-chat-room.html
http://www.abilityonline.org/
Or maybe you want to see a sex positive, genderqueer crip space:
http://www.Sinsinvalid.org
[[Continue with life]]getting an [[online support community]] has been a life saver
But threating your federal support is that jerkoff Trump. You knew many people who voted for him... he said he wouldn't touch Social Security.
You thought you were safe?
[[What's the deal with Trump cuts?]]
And also, you met a sweet person, could you hang out?
[[Proceed into dating]]
[[find a job]] Cool! Thank the Lord for your mama. Ever enduring source of love, hope, and inspiration.
And your neighbor Beth. Beth is awesome.
She helps when your mama feels sick.
The grants came through, and with just a few loans you'll be able to attend school.
There are school based supports there for you.
One of the things is, transport to and from school takes forever. Because of this, you can only take two classes a semester. It's gonna be a long six years.
[[Persevere]]Okay, so you can't afford to go to college.
That's okay.
Thing is, you still want to earn an income, to help your ma.
Even if you earn a bit of money, there's a federal law that says if you save more than 2,000$, you may lose medical benefits.
What?
Let's see, what to do...
[[Become a phone sex operator]]
[[Make Twine games]]
[[Read about poverty and disability]]
Graduating feels like the most miraculous thing that ever happened.
You were able to graduate with honors, major in English, minor in Computer Science.
It is time to [[find a job]]This transportation thing has not gotten any easier.
It takes hours to get places.
You are worried [[no one will hire you]]Not just that, there's this crazy law instituted in 1972 saying if you do save/ make money, saving more than $2,000 puts you at risk of losing all your benefits.
So even if you get a job, and you save some money, you would lose all your Medicaid support if you managed to save $2,000.
???
[[What else]]Trump proposed gutting Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).. to "save money"
Really? The US gov't spends BILLIONS (it was $583 billion is 2015) on the military budget, killing/ harming people in other countries.. and now Trump wants to strip funding from SSDI and SSI, harming people in his own country.
What's the deal?
[[Who does this affect? What does it mean?]]
[[Check out the cuties|Proceed into dating]]
[[Read more]]
Back to [[Start]]
[[End]]
https://www.nationalpriorities.org/budget-basics/federal-budget-101/spending/
https://www.forbes.com/sites/eriksherman/2017/05/23/trump-budget-does-cut-social-security-and-medicaid-breaking-major-promises/#4d617b199b75
Back to [[Start]] Because Medicaid and SSI helps you live at home, in your community, with your friends/ lovers/ mothers,
the CUTS could quite possibly lead to your institutionalization.
Totally dependant on an institution
for your needs
separate from your outside community/ friends
isolated, unable to work
who knows if/ when the Institution would let you leave/ help you leave
Not to mention the careworkers that currently make a living helping you.. they will mostly be out of work then, too.
[[Stop the Trump Budget]]
Protest! Contact your congressperson!!
Block the bill!
Grow old in health and happeniness
[[Alternate Vision of the Future]]
Back to [[Start]] Swallow it down, like a jagged little pill....
Jk, that was not too bad! Chlamydia cured.
Thank god for that doctor.
[[Focus on Your Studies]] Hmm, you've chosen.. to not go in for treatment.
Which means, your life, which is a very real burgeoning maelstrom of existence, will end soon.
Do you want to [[Read Dear Julianna Letters]]?
Here's a page with resources
How to treat, and how to avoid...
Please note that many doctors are ill equipped to deal with people who have disabilities (WHUT!) so call ahead to check and make sure. If not, try and find someone in you area who can help.
http://www.sexualityanddisability.org/having-sex/keeping-it-safe/
Back to [[Start]]
[[End]] How about a world where people get the care they need?
Where ableist design is obsolete?
Where sexuality and gender conformity are liberated?
Talk to your friends. Make this possible.
[[End]] This Twine game was made by me, an able bodied person who does not fully understand the experience of disability.
I aim to critique notions and representations of disability through a short interactive video game.
I want to highlight racism/ classism/ ableism in society.
I want to underscore the inaccessibility of modern environments.
If you haven't yet, I strongly recommend reading Dr. Erickson's chapter in The Feminist Porn Book.
The work of Emily Wolinsky influenced this game.
Also, NPR articles, and many other sources. We need a revolution in our perception of disability, and as a society to critically examine our unspoken, yet publically financed, beliefs about who we value.
There are life and death consequences to this.
Back to [[Start]] D-d-doubtful! Your SSI barely covers rent, not to mention care costs. Medicaid helps with some of that, but there are still gaps.
Do you have the community support to [[Form a Care Collective]]?
If not, [[stay at home]] You've made some friends in school.
you've made some non-friends in school
you have crushes
you have favorite subjects- English and history are your favorites.
you have never seen a movie featuring you
your pretty sure the only time you hear about disability is when people say they need charity.
You hate being told by people who don't know you, oh you poor thing
[[you wonder how the next few years will go]]
Let's say you wanted to explore and move out, to a new state, or like, got a job somewhere else!
The thing is, Medicaid support varies from state to state, so what helped you in one place might not work for you in another.
[[and your benefits might be gutted|What's the deal with Trump cuts?]]
[[Become a phone sex operator]]
[[Read about poverty and disability]]