reblogs

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ask-a-zebra:

Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesn’t have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.

For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Don’t believe me? Well I can’t even tell you how many compliments I’ve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!

The company is also family owned and the people are so sweet and helpful!

If you are having trouble with hand pain, clumsiness and dislocations please check out this amazing company!

http://www.silverringsplint.com

Lower functioning than thou.

youneedacat:

There are autistic people who get most of their self esteem from being the lowest functioning person in the room. Many feel threatened by the presence of a person who can’t do things they can.

There was this woman I knew who basically could function on her own. It was exhausting, so she needed help. But over the course of a year I saw her closely almost every day.

She could go shopping. She could make her own food. She could shower herself. She always had enough to eat. She could talk sometimes type others. Her apartment was kept in immaculate condition. It was spotless, her huge collections were dusted, her bed was made, her floors were swept and mopped. Everything was perfect in terms of self care, other than that she needed help just to get a break.

Her main problems were social stuff, namely her capacity for picking fights with people in really offensive ways, and then reporting them as abusers if they retaliated. She also stalked people, including me, and believed that everyone else’s support staff were gets by right, she’d follow them out screaming to their cars if they refused to talk to her. Bang on doors in the middle of the night demanding info about staff. Couldn’t leave the apartment without fighting and always blamed the other one, even though her favorite way to start a fight was to scream slurs at people.

Anyway I was supposed to be helping her get services. I was hoping it would stop her leaning on me and another disabled woman she’d found.

She claimed she needed total care. She claimed when I was not around, that I was cleaning her house for her. Ditto with the second disabled woman helping advocate for services.

Anyway.

She did this thing that made me want to slap her.

She would tell me that I had such better daily living skills than she did. But “don’t worry, it’s hard to have worse than mine".

When I was left alone for a week my apartment became filthy, as in bodily fluids everywhere and a huge mess. I barely got any food or water. Became skin and bones. Started passing out. Could do virtually nothing for myself. Senses so scrambled I couldn’t even understand what food was when it was in front of me. Bashed my head on things. And this went on getting worse for a year. And that was with help.

I tried to explain once what it really looks like to lack almost all daily living skills. She had the nerve to tell me that she could pick up after herself because she was so much more autistic than me, that she couldn’t function without neatness.

I made the horrible mistake of explaining to her I can’t function without neatness either, I just can’t create it because that requires skills too.

Next time I saw her my blood wanted to boil. She had dumped her laundry on the floor and failed to take out the trash. This was her idea of a mess. She said suddenly she couldn’t even clean up for herself either.

Later I found every time she met a disabled person unable to do what she could do, she’d start pretending she couldn’t do it either. Because she had to be the lowest functioning in the room.

My stalker was one of those too. I had to endure endless lectures about how I’d I didn’t rely on staff I could learn to take care of myself. After all, if she could do it anyone could. Never mind that she just straight out had lots of skills I’ve never had. People neglected to recognize them, but once they taught her, she had them. I’m not like that. I don’t have skills in reserve like that.

She kept telling me nobody should of let me out of mental institutions without daily living skills training first. Actually I got lots. It just didn’t take. Because I don’t have those skills.

But she just refused to believe it. Because in her mind, she was the lowest of the low low functioning anywhere who had language, she got lots of ego out of this, and people like me who grew up considered verbal but couldn’t do daily living as well must not exist.

(There’s a reason she most often targets autistic women who are well known, often not considered high functioning, and have a psych history that makes defamation easy. She wants to eliminate everyone in the competition for lower functioning than thou. I once saw her cuss out an autistic woman for posting pix, because she looked too normal for a Kanner autie. Nothing more.)

Another person I know, any time I mentioned a problem of my own, she’d snap at me. Like if I said they thought I was autistic she’d say, “NO, NOT LIKE THAT, I WAS A REAL AUTISTIC CHILD, like I spun on the playground by myself and I didn’t act like anyone was there when kids approached.“ (Yeah lady, and in preschool I played by myself and screamed at the top of my lungs if other kids came up, what of it?) Anything true of me had to be there times as true of her and I was supposedly some vague imposter in comparison. She always had to have the worst case of everything no matter what.

And I meet people like this all the time.

I call them lower functioning than thou.

Don’t be them.

How to feel the difference? If you accept that there are autistic people who can’t do things you can do, or look more stereotypical, without a wave of jealousy and desire to top them or compete with them… you’re fine. Otherwise, take a good look at your ego.

Also there’s a difference between simply wanting people to know people with your difficulties exist, and seeing it as a competition. The competitive part is the problem.

15r14:

annekewrites:

realsocialskills:

I’m a high school student in America. Recently I was called in to talk to a psychologist because the adults at the school noticed I was having problems. I’ve known I was autistic for about two years now, so I was relieved to finally have a chance to get my diagnosis. But I’m scared — what does…

annekewrites said:

My first social work internship was mostly doing educational advocacy services for kids with disabilities.  Here’s what I know, with the disclaimer that I’m in upstate New York and the educational landscape is a bit weird in this state, so check your local info:

- There are two different laws that you might get accommodations under: the Individuals with Disabilities Education Act (IDEA), under which you might get an Individualized Education Plan, or IEP; and Section 504 of the Rehabilitation Act of 1973, under which you might get a “504 plan”.  Generally speaking, an IEP is more extensive than a 504 plan, and is what you need if you need something about the curriculum itself modified. 

- New York also used to offer something called an “IEP Diploma”, which was a high school diploma with extensively modified requirements.  This isn’t offered anymore for a number of reasons.  But even when it was, having an IEP didn’t necessarily mean that you’d get an IEP diploma; standard and even honors diplomas could still be an option.

- IEPs and 504 plans are confidential and off-limits to anyone except you, your parents or guardians if you’re under 18 (21 in some situations), and the teachers and other staff who are involved in creating or implementing the IEP or 504 plan.  Depending on what’s in the plan, putting it into effect may make it obvious to others that you have one, but not your diagnosis or the specific reason for the plan.

- This specifically means that colleges won’t know anything you don’t tell them. 

- However, if you do have high school accommodations, I strongly recommend you keep a record of them and when you’re in college you go directly to the college’s disability services office so that stuff is on file BEFORE any kind of problems happen.  Colleges don’t do IEPs as such, but they are covered under Section 504 so you can request “reasonable accommodations” related to a disability.  This applies to classroom as well as residential life.

- As a high school student, especially if this is your first go-around with services, you absolutely should have input into your IEP or 504 Plan.  You also have the right to bring an advocate of your choice into meetings, and sometimes it’s helpful if the advocate is an adult with similar disabilities to your own (I did a lot of this for kids with ADHD, because I’m an adult with ADHD).

- The school needs to accommodate anything you need to effectively participate in the meeting.  I worked with a girl who couldn’t physically go to her IEP meeting for mental health-related reasons, so we set things up so she could Skype in.  If you need to call/Skype/text to participate effectively, they need to be able to accommodate that.

- School districts can be lazy about all of these things.  They often want to put together an accommodation that is close to things they’ve done before even if it’s not really what you need, that is less expensive, that is less “trouble”, or that tries to make you or your parents look like the bad guys.  Don’t buy into it.  It’s their JOB to do what you need to get through school, and it’s the LAW.

15r14 said:

I had an IEP for my entire time in public school in North Carolina, from kindergarten to my senior year in high school— now I’m a sophomore in college.  My disability was vision-related, so it never showed up on my diploma (although if I had taken VI (visually impaired) tutoring classes at my school it would have)— I graduated with a full IB diploma and honors, and I have a friend whose story sounds more similar to yours who did as well.  

My experience with the system was really positive— a lot of that was because my parents were very involved from the very beginning, and really advocated for me (like the poster above mentioned, they often try to paint you as the bad guys).  It sounds like your school is suggesting this, not you/your parents/guardians, so maybe they’ll be less prone to doing stuff like that?  I dunno.  Something that was really tough for me was getting MY needs heard— especially if they were different from what I was “supposed” to need.  Also, in your IEP, you get a “goal” for the next semester, and often my personal goals weren’t the same ones my caseworkers and the administrators at the school wanted to put.  

The only reason a college will learn about this kind of thing is if you take special classes, you write your college admission essay about it, or maybe if you need accommodations on your application?  All universities have offices for students with disabilities, although once you’re in college you have to advocate for your own needs.  (At least, I’ve been to two, and I’ve had to do that at both.)  Everything annekewrites said above about self-advocating in college is exactly right, at least in my experience.  

Discriminating against you in apps is totally illegal, by the way (not that admissions officers aren’t often biased in the worst ways).  

And you were worried your classmates would know— the only time my classmates knew I had accommodations was when I either told them or when my exams were put in front of me (because large-print standardized tests are printed on 15x20 paper, often 50 pages long, and are so heavy you need two desks pushed together— but they were what I needed).  

In my four years of high school, my teachers always accommodated me and took my needs seriously.  You have a different situation, but I hope you have a similarly positive experience.  

EDIT: After you’re 16 it’s illegal to have an IEP meeting without you present (unless you sign a form giving them permission!)— and I know they invited to me to mine even in middle school! 

walking a little is not the same as walking

fogwithwheels:

what I mean by this is that being able to walk a little, being able to walk with consequences, that’s not the same as being able to walk (the end)

When people are denied wheelchairs because they can walk, an important thing is missed.

They can’t walk

yes, they can physically walk.  That’s not what I mean.

What I mean is,

Can they walk to the store and back?  Can they do so safely?  Can they do so and still have energy left for the day?  For the week?

Can they walk at home?  yes?  Ok, but does doing so leave them with enough energy to leave?  To go to school, work, out with friends, on errands?  Is it safe?

Can they walk long enough to go places, enjoy things, to do what they could do if they had mobility aids?  

Yes, being able to walk, even a little, is different than not being able to walk at all.  

But it’s not the same as being able to walk, without consequences, without fear of safety, for “long distances”

So when you deny someone mobility aids because they can still walk, because you want them to still walk, you’re missing something.

If they’re asking for mobility aids, their mobility is already limited.  They’re already not walking as often because they can’t.  Mobility aids won’t change that.  But they can actually improve mobility, and allow for more opportunities to go out and be active.  

youneedacat : 
 
 This is Proloquo4Text, an AAC program for iOS devices. It does only text, unlike Proloquo2Go, and stays on a single page. It has word prediction, sentence prediction, and a side panel of pre-written words and sentences. 
 It’s cheaper than Proloquo2Go. For the moment, it’s US $64.99, €59.99, AU $69.99, and £44.99. Starting December 31st, it will be twice that amount. This is similar to the discount offered Proloquo2Go users in the beginning (which is when I got my copy of Proloquo2Go). 
 You might be interested in this if you need AAC with good word prediction and high quality voices, but not have to pay for picture symbols you’re never going to use. 
 The colors and fonts are customizable. It doesn’t have to have a brown background or Avenir fonts, that’s what I did to it. 
 I’m using it for my word-based communication and Proloquo2Go for my picture-based communication because it has always been hard for me to switch between picture and word modes on Proloquo2Go. (A cognitive problem, not a fault of the program.)

youneedacat:

This is Proloquo4Text, an AAC program for iOS devices. It does only text, unlike Proloquo2Go, and stays on a single page. It has word prediction, sentence prediction, and a side panel of pre-written words and sentences.

It’s cheaper than Proloquo2Go. For the moment, it’s US $64.99, €59.99, AU $69.99, and £44.99. Starting December 31st, it will be twice that amount. This is similar to the discount offered Proloquo2Go users in the beginning (which is when I got my copy of Proloquo2Go).

You might be interested in this if you need AAC with good word prediction and high quality voices, but not have to pay for picture symbols you’re never going to use.

The colors and fonts are customizable. It doesn’t have to have a brown background or Avenir fonts, that’s what I did to it.

I’m using it for my word-based communication and Proloquo2Go for my picture-based communication because it has always been hard for me to switch between picture and word modes on Proloquo2Go. (A cognitive problem, not a fault of the program.)

How to Write Women of Color and Men of Color if you are White.

kaylapocalypse:

kaylapocalypse:

A colleague of mine was talking to me recently about her misgivings about her capabilities regarding writing Women of Color. She wanted very badly to include several WOC characters in her sci-fantasy series, but she had some concerns about correct portrayal and writing them in a way that wouldn’t instantly piss people off. I told her I would write something about it that might help. So, here we have it: How to write POC without pissing everyone off and doing a horrible job.

In general, it comes down to three things. Research, Persistence and Consideration. Also. for the point of this essay, I am going to use Black women, Native Women and Mixed Race women as they each represent different individual (yet very important) racial struggles that need consideration.

1. Research is by far the most important thing. EVER. For this example, I am going to use black women.

It is important to start by trying your hardest to forget anything you think you know about black women and black female identity. As a white person, anything you would know about them you probably learned from media that is not controlled by or monitored by black women themselves. Meaning that it is likely not a good representation of black women at all. Or maybe you just have a black friend.

Which you should consider in the same way you would a control group for a science experiment.

One or two subjects would not provide conclusive evidence in regards to any hypothesis. Having one or two or even five black friends can’t help you with understanding the complex history of black discourse….

In order to start from scratch, I would first spend some time reading literature written by black women for black women. Learning the way black women have discourse among each other is the first step to understanding their perspective AND emulating their voice. Literature is the genre of media where POC have the most liberty (unlike film) to discuss certain topics or parts of their identity.

Then, I would delve into “complaints”. There are thousands upon thousands of articles where black women complain about their portrayal in media. These complaints are both valid and often eloquently expressed. It is important for you to know, what things black women (WOC) are already so fucking tired of seeing in regards to incorrect or offensive portrayals of themselves. Not only will it help you avoid making the same mistakes as white writers before you (an example of this: Arthur Golden and the hot mess that is Memoirs of a Geisha), But it will also get you upset about certain ways black women (POC women in general) are portrayed, and make you want to write them better. This can improve your writing in that not only will you avoid being offensive, but you now have the chance to be progressive and kick stereotypes out the window! 

Finally, I would take some time to follow some tumblr blogs that are run by the group you’re trying to write. This part of the research can really help because you’ll get a first hand, contemporary dialogue about issues within the specific POC community.  Which leads me to my second topic…

Read More

Younger people with canes - a list of protocols

cecilbuildsthefire:

Hi everyone! Today we’re going to talk about cane users, and things you should/shouldn’t do around them!

Being a cane user (having graduated from a wheelchair, to arm crutches, to this) myself, I deal with a lot. I can’t use both hands to carry things. I often take stairs a little slower than everyone else. I make several trips. I start out to destinations extra early.

I was born with extremely poor alignment in my legs, leaving the tendons and muscles in my knees to cope with this and suffer a lot of damage. Additionally, I suffer from a blood disease that has weakened my body significantly, giving me balance and stability issues that recently have peaked due to the increase in physical activity required from attending college.

I want to go over a few things people should do around persons with canes - especially younger folk with canes.

The Do’s

  • If you see a cane user struggling, offer to help them! Sometimes, we just need a little extra help, whether it’s getting that package through the door or negotiating our food tray back to our seat.
  • Pick up the cane when they drop it if you have closer access to it than them. I have anxiety so when I drop my cane I immediately freeze up, going into overdrive and clutching the nearest thing to me for fear of falling.
  • Slow down for them a little. If you are walking in a group with a cane user, be aware that they may have a little trouble keeping up. I can haul ass when I want to, but it’s not painless or energy efficient.
  • Be aware. If you know a cane user is near you, be careful with your own body and items that you don’t disturb their balance or their cane.
  • Be polite. Don’t stare or ask questions, even if they look like they don’t need a cane or are too young to have one.

The Don’ts

  • Don’t ask questions. If they want to tell you, they will. I’m tired of explaining to complete strangers that no accident happened, that I simply have really messed up legs.
  • Don’t constantly offer help. It is one thing to lend a hand when it looks like it’s needed, but another to act like the cane user is a complete invalid. 
  • Don’t grab their cane. I don’t know why I have to put this on here, but whether they are standing or sitting do not take a cane user’s cane away from them. I rely on that to get around. Don’t be a jerk.
  • Don’t insist on helping if they turn it down. We know our limits, and can usually get around fine on our own. I personally am really shy so I have trouble accepting help from strangers. Insistence only furthers my anxiety about it.
  • Don’t stare. It may be odd to see a young person with a cane, but when you stare you can make them feel even more othered than having a cane already does.

Feel free to add to this if you think of something else! This is just a quick list I developed from my experience.

(ok to reblog)

[Image description: protestors with a banner: This “clinic” lies to women.] 
  bebinn : 
 
    How To Identify Crisis Pregnancy Centers    
 Crisis pregnancy centers, or pregnancy resource centers, disguise themselves as medical facilities, but usually have no licensed doctors, nurses or counselors. They often appear under “Abortion Alternatives,” and may have names similar to abortion clinics nearby in order to confuse patients into entering their buildings instead of the real clinics. 
 Once you enter a CPC, their mission is to prevent you from getting an abortion at any cost. They will use misleading language, delay tactics, emotional manipulation, intimidation, and outright lies to either persuade you against abortion or to make you miss your appointment. The worst part? It’s all completely legal and funded by federal dollars. 
 CPCs do their best to appear as legitimate abortion clinics, so how can you tell which is which? Here is a list of red flags for CPCs: 
  The words “crisis” or “resource” appear in the center’s name 
 Their ads use language like “Pregnant & Scared?” 
 They offer free pregnancy tests and ultrasounds 
 When asked if they provide abortions or contraception, they will not give a direct answer 
 The waiting room has biased pamphlets, sometimes with graphic pictures labeled as abortions 
 They attempt to make you feel guilty about considering abortion 
 They offer baby items, such as diapers and formula 
 They downplay the effectiveness of contraception and emphasize abstinence 
 They emphasize the dangers of abortion (Fact:  fewer than 0.3% of patients experience complications requiring hospitalization ) 
 They discuss the false connections between abortion and  breast cancer ,  infertility , or  mental illness , often referred to as post-abortion stress syndrome 
 Regardless of how you talk about the pregnancy, they refer to “your baby,” the “preborn child,” “post-abortive women,” and say that you are “already a mother.” 
   More on CPCs  
  How to Identify CPCs  
  Beware of Fake Clinics  
  Crisis Pregnancy Centers: An Affront to Choice  
  CPC Warning Stickers  
 A list of licensed abortion clinics in the United States can be found on the  Abortion Assistance Blog . 
 
 I don’t know that much about this through my own personal knowledge, so I can’t vouch for everything in this post. 
 What I do know is that a lot of people who strongly oppose abortions are willing to be absolutely horrible to pregnant people in order to prevent them from having one. 
 (You can see that in the behavior of abortion clinic protestors.) 
 And I’ve definitely seen these deceptive ads for crisis pregnancy centers on Facebook and in the phone book. (And some that are aimed at convincing pregnant teenagers to give birth to provide a baby for childless couples to raise in a closed adoption). 
 I think it’s a good rule that a legitimate clinic will give you a straight answer about which services they do and don’t offer. (For instance, not all Planned Parenthood clinics offer abortions. The ones that don’t will tell you that they don’t.)

[Image description: protestors with a banner: This “clinic” lies to women.]

bebinn:

How To Identify Crisis Pregnancy Centers

Crisis pregnancy centers, or pregnancy resource centers, disguise themselves as medical facilities, but usually have no licensed doctors, nurses or counselors. They often appear under “Abortion Alternatives,” and may have names similar to abortion clinics nearby in order to confuse patients into entering their buildings instead of the real clinics.

Once you enter a CPC, their mission is to prevent you from getting an abortion at any cost. They will use misleading language, delay tactics, emotional manipulation, intimidation, and outright lies to either persuade you against abortion or to make you miss your appointment. The worst part? It’s all completely legal and funded by federal dollars.

CPCs do their best to appear as legitimate abortion clinics, so how can you tell which is which? Here is a list of red flags for CPCs:

  • The words “crisis” or “resource” appear in the center’s name
  • Their ads use language like “Pregnant & Scared?”
  • They offer free pregnancy tests and ultrasounds
  • When asked if they provide abortions or contraception, they will not give a direct answer
  • The waiting room has biased pamphlets, sometimes with graphic pictures labeled as abortions
  • They attempt to make you feel guilty about considering abortion
  • They offer baby items, such as diapers and formula
  • They downplay the effectiveness of contraception and emphasize abstinence
  • They emphasize the dangers of abortion (Fact: fewer than 0.3% of patients experience complications requiring hospitalization)
  • They discuss the false connections between abortion and breast cancerinfertility, or mental illness, often referred to as post-abortion stress syndrome
  • Regardless of how you talk about the pregnancy, they refer to “your baby,” the “preborn child,” “post-abortive women,” and say that you are “already a mother.”

More on CPCs

How to Identify CPCs

Beware of Fake Clinics

Crisis Pregnancy Centers: An Affront to Choice

CPC Warning Stickers

A list of licensed abortion clinics in the United States can be found on the Abortion Assistance Blog.

I don’t know that much about this through my own personal knowledge, so I can’t vouch for everything in this post.

What I do know is that a lot of people who strongly oppose abortions are willing to be absolutely horrible to pregnant people in order to prevent them from having one.

(You can see that in the behavior of abortion clinic protestors.)

And I’ve definitely seen these deceptive ads for crisis pregnancy centers on Facebook and in the phone book. (And some that are aimed at convincing pregnant teenagers to give birth to provide a baby for childless couples to raise in a closed adoption).

I think it’s a good rule that a legitimate clinic will give you a straight answer about which services they do and don’t offer. (For instance, not all Planned Parenthood clinics offer abortions. The ones that don’t will tell you that they don’t.)

5 Step Guide on Writing a Character with X Disorder or X Disease

youneedacat:

referenceforwriters:

Rebloggable per request.

I’ve been thinking about this and came to the conclusion of like… fuck it, it’s time to write a 5 Step Guide on Writing a Character with X Disorder or X disease.

Step one. Create a character. Don’t look for a certain disorder then write the character. Have your character written first, and by that I mean everything that doesn’t have to do with the disorder/disease. Of course this or that disease will have an effect on your character’s personality but your character’s disease isn’t their personality. Don’t use a certain disorder just to add it to your character because you think it’s cool, people in real life have it, it’s a real issue. Respect it.

Step two. Research like a motherfucker. 

Step three. Be creative. Ask yourself how you’d be if you had it, know that you have a better image of what it is, causes, symptons, diagnosis and treatment. 

Step four. Don’t focus entirely on the disease, or the disorder, or the disability. Then it stops being about the character and starts being about what it shouldn’t be.

Step five. Yay you’ve done your research and have a character and this character happens to have this disease but they have a personality.

Step six (actually an extra from step two): find people with the disease (another good idea is to search for experiences from people with it) or that have knowledge in it and ask because it’s okay not to know and even better when you’re willing to learn.

Now go and write awesome characters.

-Alex

I would add to this:

Never make the character’s experience of the condition exactly like the textbook says it is.

Because:

1. Nobody is exactly like the textbook. Ever. Even the people closest to the textbook aren’t exactly like it. Anyone who says they are is either mistaken, confusing themselves, or lying. (Lying isn’t necessarily a terrible thing to do in a world where often to get help you have to seem textbook. But it’s a thing to be aware of.)

2. Textbook-type descriptions are almost always written by people who don’t experience the condition. People who don’t experience the condition always get a lot of stuff wrong when it comes to what the actual experience is like. Often this is even true — sometimes especially true — of world-renowned experts in the field.

Example #1:

I once had a doctor tell me that most people with gastroparesis don’t experience nausea. We just supposedly experience our stomach feeling full and we stop eating. I have never encountered a person with gastroparesis, let alone severe gastroparesis like I have, who doesn’t feel nausea as one of their main complaints if not absolutely the main complaint. But that doctor succeeded in making me feel weird for throwing up during my gastric emptying study.

The reason the doctor believed this was that his understanding of GP was mechanical rather than experiential. He understood GP is caused by partial paralysis of the stomach leading to slow emptying leading to loss of appetite. He didn’t grasp that loss of appetite is usually actually nausea — even that we often feel very hungry yet too nauseated to eat at all. That’s something you can only get from the people who experience it.

Example #2:

Most people who read modern literature on the subject think autism is a condition caused mostly by a lack of social awareness.

While some autistic people will describe themselves that way (note that back when it was given psychoanslytic origins we often described ourselves that way too, self-description changes with the times), many autistic people describe our actual experiences as a complex combination of differences in sensory and perceptual processing, motor planning, and cognition. With social stuff on the periphery if it’s considered a major part of our experience at all.

Also note that while professionals say we lack empathy, many of us experience ourselves as having so much empathy as to be overloading.

That’s what happens when you mainly describe a condition on outside appearances and make up your own theories, then make up tests that will always prove your theories right, ignoring the extreme flaws in your tests. (I’m lookin at you, Simon Baron-Cohen.) Seriously, autism is a field where all you have to do to get published is sound vaguely convincing. That’s why it attracts so much bad science. For a lot of descriptions of bad science in autism go to the website of Morton Gernsbacher. It’s rampant.

Always see what people describe their own experiences as. And don’t stop at the biggest names, not those who automatically echo the experiences considered the most valid. Seek out people who describe their experiences in unique and unusual ways that all differ slightly, sometimes hugely, from each other. You will start to find a huge variety. From that variety you will begin to understand how things really work.

Also:

3. Don’t combine every possible experience or stereotype you have ever heard into one person. Each person’s experience is going to be different. They can’t all fit into one person. That’s the mistake made by the author of The Curious Incident of the Dog in the Nighttime. He combined every possible autistic experience and ended up making an unrealistic character because he didn’t understand how each experience fitted together. I’m not talking about combining traits of so called LFA and HFA, which does really happen. I am talking about cobbling together every surface trait he had ever heard of with no clue what lies under the surface or why they cannot fit together in the pattern he put them in.

4. That same author made another mistake. Which is really covered in some of the instructions anyway. He made his character basically a robot running on his autistic traits instead of any other thing. As in, if you program in any situation, you know exactly what he would do. That’s not how real disabled people work, autistic or not. We don’t run on programming caused by our condition. Even when, like autism, our condition touches every part of our being in one way or another. If you write a robot or automaton where you can predict their every move based on their condition, you’re not writing a real person. Just because a condition affects the brain doesn’t mean you can predict our every move or that we don’t have a personality.

I’d add to this also: 

1. Do not use disability as a loaded symbol. Don’t use a character’s disability to make them inspiring, or to insert tragedy into your story. Don’t use it as a way to make them bitter. Disability is a real lived experience, not a symbol. And it doesn’t mean the same thing to disabled folks as it does to folks without disabilities - at bottom, people have lives. So write the life.

2. Do not write people with disabilities as disembodied minds. People with disabilities live in bodies. Bodies are part of life. Folks without disabilities tend to be scared of noticing disabled bodies - be careful of that in your writing. If your character isn’t experiencing anything physical, or their physical experience isn’t substantially different from someone with a nondisabled body, you’re probably making that mistake.

3. On the other hand, don’t write voyeuristic accounts of people’s bodies either. You’re writing a person, not a zoo exhibit for people to stare at. For instance - the complications in meeting up with folks socially arising from most public places not having accessible bathrooms might be relevant to your story, but the details of how someone uses the bathroom probably aren’t. If you’re including that kind of thing, make sure you know why you think it’s relevant to your story. 

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I’ve been trying to write a post on the problems with “just be yourself” for a while. I’m not sure when I’ll be able to finish writing it, but this comic that’s been circulating lately is a *really* good illustration of it.

First panel: some shapes on a wall, looking at a round hole they can’t fit through, with a word bubble “I don’t know what you guys are complaining about….”

Second panel: the other side of the wall. Can see the shapes looking through a round hole. A circle says gleefully “If you want to make it through, JUST BE YOURSELF!”

ocdplayer:

Protip: when you find out someone has a phobia of something, do not talk about the thing they have a phobia of.

Don’t make complicated jokes about it.

Don’t make disgusting comparisons between the object of their phobia and food items.

Don’t try to talk to them about the subject at length.

Don’t talk about it.

Everyone who does this still considers themselves to be extremely “kind, understanding, and thoughtful”. Everyone does this. Fucking stop.

More on restricted diets

joobaloob:

realsocialskills:

Do not take food issues personally.

If someone can’t eat something, it’s not personal:

  • It isn’t a rejection of your hospitality
  • It isn’t an insult to your cooking skills
  • It isn’t a comment on your health, your lifestyle, or your diet

It’s also not any of your business:

  • Don’t expect an intimate conversation about the reasons behind the food restriction
  • Don’t make a big deal about it
  • Do not comment about weight loss
  • Do not offer unsolicited medical advice
  • Do not offer unsolicited health advice
  • Or unsolicited religious commentary
  • Or your views on vegetarianism
And especially, don’t do dangerous things:
  • Don’t try to trick people into eating things
  • Even if you think their food issue is a ridiculous phobia and that tricking them would cure it
  • Seriously, seriously, don’t do that
  • It won’t help, and this kind of thing can and does kill people
  • And, in any case, irrational people also have the right to say no

You do not need to agree that the person is correct about what to eat in order to interact with them respectfully. You just have to arrange for it to be possible for them to be in spaces you’re in, and for it to be predictable whether there will be anything for them to eat there.

Whenever I tell someone I can’t eat something (usually pizza) because it has gluten in it, I tend to get one of three responses:

  1. “What’s gluten? What’s Celiac?” Etc.
  2. “Oh yeah! I chose to go gluten-free because of (bullshit they heard on TV or read on the internet)!  Why did you choose to do it?”
  3. “Yeah, I’ve got a sibling/friend/spouse/child who can’t eat gluten.” OR
    “I’ve got it too! Celiac high-five!”

 If it’s Answer 1, I just explain what Celiac is.  If they ask what happens when I eat gluten, I usually make some joke about the obscene amount of shit that explodes out of my ass when I eat it.

The people that use Answer 3 are extra cool and we usually commiserate about dietary restrictions and discuss what kind of shitty gluten-free bread is the best.

It’s the fuckers that use Answer 2 who annoy me.  I have the hardest time explaining to them that, no, I didn’t choose to go gluten-free, why the hell would I?  They usually say it’s meant to help them lose weight (Incidentally, I’ve never met anyone who used this excuse who actually looked like they needed to lose weight) and that they read gluten is unhealthy for you anyways.
It’s not. Humans have been eating gluten for millennia and it didn’t do anything to them. In fact, after being on a gluten-free diet for a while (6 months, I believe), you lose the ability to digest gluten.  Meaning, once you switch back to a normal diet, you gain the symptoms of someone with Celiac who ate gluten; it’s terrible for  your intestines.  This is according to what Dr. Guandalini, one of the leading Celiac experts in the world told me.  A gluten-free diet is low-carb, since it means no bread, but that’s no reason to go gluten-free when you don’t have to.  

Every day, I wish I wasn’t gluten-free.

Every day, I hope for a cure during my lifetime, just so I can eat whatever I want again. Yet, I know there won’t be.  I will never be able to eat a doughnut again without feeling as if someone stabbed me in the gut for a week.  I can’t even lick a fucking envelope closed.  

I’m also at a far higher risk of developing diabetes because of my Celiac, meaning I must watch my weight very closely.  Thank god my metabolism’s still fast enough that I can eat greasy Mexican food without worrying too much.

So, yeah, I’ll tell anyone who asks about Celiac, and I joke about it all the time, so most of those restrictions don’t apply to me, save for one: “Don’t offer unsolicited health advice” because, so help me God, I will not tolerate it from someone who doesn’t know what they’re talking about.

About friendship

applesandporn:

realsocialskills:

seraseatscissers:

realsocialskills:

seraseatscissers:

realsocialskills:

If someone doesn’t like you, they aren’t your friend, and you shouldn’t be hanging out with them.

If someone is always telling you why you’re not good enough, they don’t like you.

If someone is always telling you how special it is that they like someone as flawed as you, then they don’t like you.

If someone consistently expresses contempt about you to mutual friends, they don’t like you.

Life is better when you spend your time with nice people who like you.

shit i wish i knew this at school

also i wish my school had even the slightest bit of provision for allowing me to avoid/stop hanging out with people that didn’t like me

Me too. School often actively prevents people from learning this, especially people who are considered socially incompetent.

That’s one of the reasons my blog is called realsocialskills.

yeah that’s very true, they keep trying to force this ‘you are going to have to get along with everyone’ thing onto vulnerable people which is fucked when half of your classmates are abusing you.

Right and also - there’s a fundamental difference between getting along with people professionally, vs considering people friends and spending time with them socially.

…And for the extra special fucked-up-ness: while the trying/pretending-to-be-friends kind of getting along is what they drill into you at school (especially if you are female), they never tell you that in actual work environments it can often be given as a reason not to promote someone (especially female someones) because they “just don’t have the necessary competitiveness.”

Huh. I didn’t know about that. 

some things I think I know about small talk

applesandporn:

realsocialskills:

Regarding professions and names:

  • If you are in a college or university setting, asking someone what their major is is considered an acceptable small talk question, and it can lead to actual conversation.
  • Asking someone what they do (for work) is socially acceptable in some crowds, but not others. It’s acceptable if it’s perceived as similar to asking about a major, and rude if it’s perceived as an attempt to determine how much money someone has or how much social status they have
  • Making jokes or disparaging comments about someone’s job or major is considered boorish unless you have the same job/major and it is also self-mockery. It’s not nice to insult people you just met.
  • Similarly, don’t make jokes about people’s names upon being introduced. They’ve heard them all before.
Regarding sports:
  • A lot of people like to talk about sports as a primary form of small talk. I don’t really understand this. Maybe some of y’all can chime in?
  • In the US, outside of New York, people are likely to dislike the Yankees, and some people find Yankees fans annoying, and some get really angry about Yankees fans. (This is especially true in Boston).
  • Many areas, particularly college towns, have intense and scary sports fandoms. If you don’t understand the sports fandom in your area, it’s probably better to avoid wearing sports logo clothing, and this is especially true if there is a game on.

I’m pretty sure the sports-as-small-talk thing is because it’s a fairly common interest, and you can at least guess some of the other person’s opinions by the region they live in and how the local teams are commonly seen.  Popular TV shows are sort of similar, but less common, because it can get awkward if you express enthusiasm or distaste for a show the other person turns out to feel the opposite about.  The current weather is an even more universal topic, and thus the most stereotypical subject of small talk.

The stuff about professions and names is all totally spot-on, so far as my experience goes.

With shows it can work to say “hey, did you see last night’s/last week’s episode of x?”, and then judge from their reaction whether this is a good line of conversation to continue.

It doesn’t commit you to the extent that saying a show is awesome/horrible does; you can find out what they think before saying anything emphatically.

Fourth thing I wish I'd known sooner

not-allistic:

You don’t have to choose between pretending to be 100% NT all the time and disclosing your diagnosis. You don’t have to choose between never asking for accommodations in informal situations and disclosing your precise diagnosis. Here are some things you can say.

  • “I’m bad with faces” (as opposed to “I have prosopagnosia, also called face-blindness, which involves a neurological deficit in…”)
  • “I have sensitive hearing” (as opposed to “I have auditory processing issues which present as a sawtooth audiogram, meaning that I’m more sensitive to certain frequencies than others, causing problems with tolerating loud noises and with understanding auditory information”)
  • “Sometimes, I’m tactless, so tell me if I accidentally say something offensive so I know not to do it again” (as opposed to “I have an autism spectrum disorder”)
  • “I don’t want to eat that food right now” (as opposed to “I have tactile sensitivities which make eating certain foods difficult”)
  • “I think better when I fidget” (as opposed to “I have stims and symptoms of ADHD because of my ASD”)

That’s all they need to know. Don’t bother to disclose everything to people if you don’t want or need to. Of course, don’t hesitate to disclose if you truly need to or if you feel it’s important that this person know.

How to Treat People With a Speech Impediment!

phanapoeia:

waywardvagabond:

irredickable:

Hello this is a post that I have been meaning to make for a while! 

I’m Kim and I was born with apraxia of speech! It gave me a severe speech impediment for most of my childhood and speech therapy has now mostly lessened it so it sounds like an accent. I’m mainly saying this so you guys know I’m qualified to talk about this!

So yeah here are some tips:

  • If you are having trouble understanding a few words someone is saying, don’t hesitate to ask them to repeat it or rephrase it if it’s something that would be easy for them to do (i.e. if they had severe stutter that made saying sentences difficult).
  • Don’t try to teach them how to say words or sounds correctly. It’s annoying and it also implies that it’s really easy for them to get over their speech impediment. (It isn’t.)
  • Don’t act awkwardly or apologetic around someone when you find out they have a speech impediment. It’s just another part of the person.
  • Treat them with respect like you would any other person. Don’t taunt them or tease them about it. 

Also BE PATIENT if they’re having trouble with a word or whatever. It’s just discouraging to be trying to talk and others are talking over you because they can’t wait a few more seconds for you to get a word out. If they look like they want help or ask for your help to figure out a word, okay.

But as someone with a stutter, unless I know you well, when someone speaks over me when I’m stuttering, I feel like I’m not worth your time for a conversation, so there’s not any reason for me to keep talking anyways.

(via homoerotics)