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12:02pm July 26, 2014

andromedalogic:

Also, re: that last reblog — the idea of ‘appropriating’ disability is already a key component of ableism. If you allow this idea to exist, as it currently seems to be spreading on tumblr, you ignore the context in which it’s happening. That context is: disabled people are already told that we couldn’t possibly be disabled, because well, you can walk sometimes. Or you can talk sometimes. Or I saw you make yourself a sandwich the other day — why can’t you do it now? Or, if you would just try a little harder. I know you could do it if you’d just apply yourself. You must be faking it. Nobody really feels or thinks or experiences that.

of course, the word ‘appropriation’ isn’t used, but THAT IS ABLEISM, and if you take the diluted way tumblr uses the word ‘appropriation’ and apply it to disability? you literally just get ableism.

There are some things that might seem similar to appropriation of disability, that are worth talking about. For example, how non-disabled actors get a lot of praise for playing disabled characters in movies. That’s a thing.

but overall, ‘appropriation’ means ‘stealing’ — and honestly, at this point in time, we do not have a wealth of people jumping to steal disability experience and culture because they think it’s cool. or because they think it would make them money. in fact, the idea that people do this — pretend to be disabled to gain imaginary benefits — is an ableist myth.

so by all means, bring in the concept of appropriating disability when there are more than 2 non-disabled people in the world who would apply the word ‘cool’ or ‘lucrative’ to disability culture. right now we’re just fucking gross. and most of the disabled people i know would be thrilled to work toward a world in which ANYONE, regardless of disability, is allowed to use the accommodations they need. that’s what ‘universal design’ means. non-disabled people use assistive technology and do weird things all the time, it’s just that those things are normalized. and we want to bring attention to that.

we WANT to make a world where, if someone is flapping their hands, nobody stops them and says ‘you know, you’re insulting people who are REALLY autistic. are you sure you’re not pretending? are you sure you’re not just copying them? try harder.’

I am autistic and my parents have said things like that to me.

I do not care whether the person in the above anecdote is in fact autistic, or has ADHD or Tourette’s, or is in fact completely neurotypical, because either way, the idea hurts me and mine.

The idea that if you’re doing something disabled people do, you must be faking or stealing or copying or doing it wrong. If you make this idea a social justice idea, you primarily hurt disabled people.

You’ve got it backwards. We want everyone to be able to function as it works best for them, labels immaterial, societal barriers immaterial.

cosigned

7:53am July 25, 2014

soilrockslove:

a-spoon-is-born:

soilrockslove:

portmanteaurian:

I’m skeptical about the idea that people can appropriate disabled experiences in the same way they can culture

Like…if you experience something that is similar to my experiences, and that is similarly debilitating

I don’t care if you have the same Disability Label I do, we still have a bond there.

Especially for psychiatric stuff, where diagnosis is mostly just based on identifying a collection of symptoms? If you have one less symptom than you need to earn the label, it doesn’t make the symptoms you DO have any less real

Clatterbane:

#seriously  #also they’re generally shit at recognizing patterns  #and applying appropriate labels  
And besides all that - if you have certain experiences, you have those experiences.  There’s no way you can be “appropriating” them.  They are happening to you and you can talk about them.
And if certain ways disabled people make their lives better also help you - it’s ok to do them!
(Of course there are ways of being a dick when talking about disability, and it’s better if people avoid being a dick.  But that’s a separate issue)

I really don’t understand this at all, is it in response to a specific situation that I’m unaware of?

When I think of the appropriation of disability experiences, I’m thinking of stuff like abled  musicians or dancers using mobility aids like crutches or wheelchairs to invoke othering and horror, or narratives from disabled people being rewritten or processed by abled people for an abled audience for “inspiration” purposes, or abled people using the words of one disabled person against (to silence or refute) other disabled people.

All those things cause harm.

If we’re talking about this at an individual interpersonal level, if someone sees something I write or we’re having a meatspace conversation, and I talk about something I experience and they say “me too, and your coping mechanisms would help me too”, then that’s 100% fine.

But if the response is something like, “well I experience this too and I’m not disabled, therefore neither are you”, then THAT is harm (ableism). But not necessarily appropriation.

Appropriation would be if someone who is abled, say, pretended to have a disability for a year as an “experiment”, and then made a career out of explaining to abled people what it’s like to be disabled. And say they wrote a book about it, and people buy that and believe that more/over the ACTUAL experiences of disabled people. That is massively harmful, AND appropriation.

I mean, when talking about “appropriation” it means that someone with power over you takes your story or your image or your identity and misrepresents it (or in some way falsely claims it as their own) to a larger audience that THEY have access to, and that you do not (or you are seen as ‘too biased’ because your experience IS authentic, as horrible as that is).

In other words, that ^ is how people can appropriate disabled experiences that same way they can culture.

Oh yeah, this is a response to several specific things that have been happening.

Everything you said above makes sense.  And Slashmarks has useful commentary too.

But recently people have been arguing that using interaction badges (those colored things that let people know if you are up for talking to people or not) at *any* Con except Autreat would be some sort of appropriation. >.<

Or getting into elaborate and sharp-edged discussions over who is “allowed” to use AAC or a walker or glasses.

And I’ve been seeing several blogs I follow getting questions from nervous young people who have ADHD or Anxiety or think they are Autistic but don’t have a diagnosis, asking if it is ok if they talk about their own stimming.

And none of those examples are *actually* appropriation.  But still the word gets used. >.<  And having that level of fear and hostility around people who are just trying to figure out what their disability needs are doesn’t help anyone.

Yes, exactly, that.

And it really doesn’t help that the word ‘appropriation’ gives it this sound of legitimacy, so that people who know what actual appropriation is, respond to these descriptions with some level of skepticism, like “well appropriation is a real thing and we have to be careful of it and here’s how it would work if it was really appropriation, and etc.”  When… that’s not what’s going on here.  Real appropriation was never on the table, was never what was happening, was only a specter used to make anti-disabled witch-hunts, the old kind, the kind we’re used to, the kind where people are trying to root out ‘fakers’, sound more legitimate.

6:30am July 25, 2014

Listening to people who have disability accents

realsocialskills:

mzminola:

realsocialskills:

People with certain disabilities often have heavy disability accents. Their speech can sound very different from the way most nondisabled people speak.

People with disabilities that affect communication are often pushed into separate programs, particularly in adulthood. Even when they are in the same classes in the same schools, there isn’t much of an expectation that any peers listen to them. This was even more true a generation ago. As a result, most people without disabilities are lousy at understanding people with disability accents, and don’t understand that this is a glaring hole in their social skills.

Many unskilled people tend to maybe ask people with disability accents to repeat themselves once, and then they get frustrated and start ignoring them. Sometimes they pretend to understand, and smile and nod rather than actually listening. Sometimes they hang up on them. Sometimes they pass them off to another person, who also doesn’t bother to actually listen. Sometimes they hang up. If they are medical workers, sometimes they write on a chart that someone is impossible to understand or has no communication (particularly if that person also has an intellectual disability.)

Do not be this person. If you can’t understand someone with a disability accent, the problem is your skills, not their voice. (If you have a receptive language disability that prevents you from learning to understand accents, then it’s no one’s fault and you need an interpreter to communicate. Neither their voice nor your brain is wrong. In that situation, the skill you need to develop is finding an interpreter).

If you listen, and make it clear that you are listening, you will learn to understand, and you will be able to communicate successfully with more people. 

An important phrase for this is “I’m having trouble understanding what you’re saying, but I care what you are saying.”

Make sure it’s true, and keep listening. The more you listen, the easier it will be to understand. Understanding . And practice. You get better with practice.

Too many people are ignored because others can’t be bothered to understand their accents. You can make this better by listening (and by insisting that people you supervise listen.)

mzminola said:

I’d like to add that “finding an interpreter” is not necessarily the only option, or even always most effective option, assuming “an interpreter” = “another human”.

If speaker and listener both have reading & writing skills in the same language (or even if just the speaker can write and the listener can read) then the two can communicate in writing, and not have to involve a third person.

If at least one has an Augmentative & Alternative Communication (AAC) device, then that could sometimes be used too.

I work in retail and have auditory processing difficulties. With customers and coworkers who share my dialect of English, I still find myself asking for repetition, or re-wording. Recently, I had to ask a customer who needed an item placed on hold to repeat herself about five times, as our interaction was over the phone, and there was too much background noise on both our ends.

When I get customers who do not share my dialect of English (speaking a dialect from a distant part of United States, or who have English as their second language) the amount of repetition/re-wording needed increases. If there is no assistance available to the two of us, I will lead the customer to the part of the store I think contains what they’re searching for. If I have misunderstood them, they tell me, and we try to find more descriptions and alternative phrasing, until either we do find what they need, or rope in more coworkers, or traverse the whole store and find that we don’t carry what they seek.

In the case of English-as-second-language customers, many do bring their own interpreter, often a relative, and between the three of us, a similar process as the above goes down, but much faster.

Highly effective are the customers who bring a smart phone, tablet, or other AAC device; computer-translated vocabulary isn’t always as exact or nuanced as needed, but it eliminates auditory processing issues from the equation, and the customer is also able to show me pictures.

Customers who share my dialect and have no noticeable disability accent also benefit from bringing AAC devices with them shopping, because if they can access the store’s website and find the product code, we can search our inventory, something we’re not able to do with just a description/name. Or they show me pictures of what they want, and while we might not have the same product, I can find them something similar. Corporate encourages use of such tech, offering coupons/sales/discounts through multiple platforms.

Summary of my thoughts: human interpreters are one of many  communication options, alongside writing, computers, etc. Which will be the most effective or practical varies contextually.

realsocialskills said:

Thank you for the important points you’ve added.

6:35pm July 24, 2014
kelpforestdweller asked: On the topic of caregivers, do you have any tips you'd be willing to share about how to find good ones? Anything that might not be obvious about how to have good working relationships with them? Or do you know of any resources about this? Thank you.

One thing I have found is that I had to learn to stand my ground about not allowing in bad ones.  I used to think that I had to put up with anything and everything short of horrible abuse (and sometimes even put up with horrible abuse, including sexual abuse) in order to prove that I was a “good client” and not “one of those bad clients who sends their staff away”.  And I was encouraged in that direction by abusive case managers.  But the turning point for me with caregivers was actually when I filed a complaint against an abusive case manager and won.  And in general, a lot of turning points for me have involved standing up to people.

But you have to stand up to them in the right way.  If you stand up to them ineffectually, it’s just as bad or worse as not standing up to them at all.  I’ve met people who think that they’re assertive and the sort of person that nobody could possibly walk all over — while people walk all over them.  Usually they’re people who will sit there and rant at someone about how wrong what they are doing is, or threaten them with action, but there’s no follow-through in any way that actually uses power effectively and there’s often a lot of excess aggression thrown in.  (And abusive caregivers will simply let you burn all that excess aggression off which hurts you and doesn’t harm them or stop them in any way.)  And I’m not good at explaining the difference.  And there is not always a good way to stand up to them, and sometimes it is better not to stand up to them.

If that sounds contradictory it’s because it’s complicated, and maybe it’s not the kind of thing I’m capable of explaining well.

But I do know that being assertive — not wildly aggressive, and not meek — has almost always gotten me more respect from people than any other way of dealing with people.  Setting actual boundaries and keeping to them.  Things like that.  People actually respect you more when you set boundaries than when you let them through your boundaries.  Even fairly decent people will be somewhat less respectful if you don’t have clear boundaries.  Which is horrible, but it seems to be the truth.

As far as good working relationships go, one thing I learned from watching my mother interact with people is that she asks them a lot of questions and lets them talk about themselves and that seems to make people like her more.  And I’ve found in addition to that it’s good to acknowledge that they’re doing hard work for very little pay.  And in general to do little things that show you know they’re human and not a programmable robot or something.  A lot of which should be obvious but isn’t always, especially to people with social skills problems (whether those problems are innate or come from never having had the social experiences most people had growing up to practice those things, and for autistic people I think it’s a combination of both and more).

12:29am July 24, 2014

soilrockslove:

portmanteaurian:

I’m skeptical about the idea that people can appropriate disabled experiences in the same way they can culture

Like…if you experience something that is similar to my experiences, and that is similarly debilitating

I don’t care if you have the same Disability Label I do, we still have a bond there.

Especially for psychiatric stuff, where diagnosis is mostly just based on identifying a collection of symptoms? If you have one less symptom than you need to earn the label, it doesn’t make the symptoms you DO have any less real

Clatterbane:

#seriously  #also they’re generally shit at recognizing patterns  #and applying appropriate labels  
And besides all that - if you have certain experiences, you have those experiences.  There’s no way you can be “appropriating” them.  They are happening to you and you can talk about them.
And if certain ways disabled people make their lives better also help you - it’s ok to do them!
(Of course there are ways of being a dick when talking about disability, and it’s better if people avoid being a dick.  But that’s a separate issue)
12:26am July 24, 2014

“We are used to ignoring our own bodies. “These carrots are too spicy” we complained as a child, only to be told no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what you are experiencing is invalid. We heard: you are invalid. You do not experience the world the same way as everyone else, and therefore, your experience is wrong. You learn to ignore the ever-present pain because nothing can be done about it, but then you have a kidney infection and others get mad at you for not noticing sooner. But why should you trust your body when it is always wrong?”

— 

Scarred by Kate at Thinking Autism (via disabilityhistory)

Oh so true.

(via soilrockslove)

I was always told “that didn’t hurt” if I said “ow”.

So I stopped saying “ow”.

I lived with severe chronic pain, never getting below a 6, from the time I can remember existing.  Like some of my first memories are that when I tried to connect to my body closely, I’d get blasted with pain, and I’d dissociate to get away from it.  It was some kind of neuropathy or central pain, we don’t know which.  I didn’t communicate about it until I was 15, at which point I was told it must be seizure activity because Neurontin made it better.  Then several different meds later, I told that story to a doctor at the age of 22 or so when the pain had got so bad I was bedridden for a month (had to personally retrain myself to sit up for long periods), and she said that sounded like neuropathy and prescribed Neurontin on the spot, even though I’d been careful not to name Neurontin during my description, I just said “an epilepsy medication”.  

So 22 years of searing, horrible pain that “didn’t exist”.  Didn’t start writing about the pain until I was maybe 18 and found that lithium made it somewhat better.  But I’m glad I got off lithium because that shit is dangerous.  Anyway, when I got on Neurontin, I had to revise my entire pain scale.  What I had called a “1” before was now a “6”.  That’s how bad the pain was.  And I had to revise my ability to detect overload, because it had always been associated with the pain becoming more severe, and with the pain treated, that was much more subtle if it happened at all.

Now I’m on Lyrica and Trileptal instead of Neurontin but they still treat it well.  I tried to reduce my Trileptal recently and ended up in complete agony pain-wise.

Anyway, it makes me angry that an autistic child can grow up in this kind of pain, in this level of pain, with nobody noticing, and everyone saying “that didn’t hurt” all the time.  With neuropathic pain, everything hurts — your clothes hurt, being brushed against hurts, the air on your skin hurts, all the things I was told “didn’t hurt”, hurt like hell, and go on hurting a long time after the initial touch is over.  I remember having these “afterimages” on my body, like someone would brush past my arm and for an hour my arm would burn in that location.  But “that didn’t hurt”.

And this is also behind several near-death situations where I didn’t communicate about pain for any number of reasons but one was who would even believe me.  Or I did communicate about pain but lacked the correct body language so was written off until I hit the point of organ failure.  Or things like that.  And then they wonder at the fact that when they give me trigeminal nerve blocks, I’m the one patient who doesn’t squirm or grimace or cry out during the procedure.

And then there’s the whole “They don’t feel pain like we do” thing to contend with.

12:11am July 24, 2014
  • Autistic Person: *Flaps when they're happy*
  • Autistic Person: *Hisses and pulls away when they're upset*
  • Autistic Person: *Points and jumps when they need something *
  • Autistic Person: *Rocks and stomps when they're upset*
  • Autistic Person: *Verbally stims when they're anxious *
  • Autistic Person: *Pets other to show love and affection*
  • Autistic Person: *Has a thousand unique stims and vocalizations for different contexts that convey different meanings*
  • Allistic Person: "See, they don't communicate at all!"
4:18pm July 23, 2014
Anonymous asked: I have a facebook friend with multiple illnesses, and I thank for pointing out multiple illnesses is in fact a common thing. It also helps me feel better about my plausible Bipolar ADD and Cerebal Palsy. Basically you taught me something.

I’m glad — and yes I really think most disabled people have multiple disabilities, just based on knowing a lot of disabled people, it’s very rare I’ve met someone with just one thing going on.

4:06pm July 23, 2014

“That tone of voice.
That specific tone of voice.
Is the tone of voice that people with physical disabilities refer to when they say, ‘they talk to me like I’m Ret@rded’. I get what they mean. I don’t like being spoken to that way either. I really don’t. It grates, it demeans, it insults. I kind of hate it.
But here’s the thing.
I don’t know a single person with an intellectual disability who likes being spoken to that way either.
Not one.
So maybe we need to say “They speak to me like I’m lesser.”
Or, “They speak to me with a voice full of assumptions.”
Or, “They speak to me in a tone of voice that even puppies find offensive.”
Or, maybe best, “They speak to me in a manner that no one deserves.””

— Dave Hingsburger, Rolling Around In My Head (via okc-misandry)
4:03pm July 23, 2014

Queerability Statement About Jane Doe in Connecticut

queerability:

Queerability, a leading LGBTQ and disability rights advocacy organization run by and for LGBTQ people with disabilities, expresses our profound concern about the Jane Doe case in Connecticut. Jane Doe is a transgender teenage girl with a psychiatric disability who has been moved from a psychiatric treatment facility to a juvenile detention center for boys in solitary confinement without trial due to violent behavior. The forced institutionalization of Jane Doe is incongruent with the Olmstead vs. L.C decision.

We urge the Department of Justice to take action and conduct an investigation. We also call on other LGBTQ and disability rights advocacy organizations to speak out on this critical issue.

3:46pm July 22, 2014

lichgem:

otterlymagic:

youneedacat:

lichgem:

I’m beyond exhausted with the attitude that the only reason I could possibly exist publicly as a mentally ill person is because I’m trying to get attention or something

Instead of maybe I just want to BE and not have to hide a huge aspect of my life out of terror

Everyone who makes judgments about who’s ‘real’ or not is inevitably forcing lots of mentally ill people to go stealth and I don’t think that’s unintentional. Their vitriol is directed at US, make no mistake. Not just ‘fakers,’ since people will decide we’re ‘fake’ for any old reason.

Totally agreed.  And their logic about who is a faker makes no sense at all anyway.  Like, “You’re a faker if you put it in your URL and don’t talk about it.”  Why would a faker do that?  A faker would be talking about it.  Not that it fucking matters, because it’s better for there to be some fakers  out there, than it is for there to be people calling people fake who aren’t.  But seriously, the logic makes no sense.

I feel this way about other disabilities too, not just mental illness. Anything that can be hidden or disguised as something non-disability related (I have significant visual and motor control problems, just to name a couple things, but with various coping mechanisms I can generally pass as non-disabled in both those areas).

Especially because, with the number of “issues” I have, I’ve had many people assume that I’m making up some of them because “no one could have that many things wrong with them”.

And it’s tiring to face that, especially online where I can’t prove them wrong no matter what I do. So I end up censoring myself, often, to spare myself the stress of self-defense. The stress of passing and censorship isn’t much less…but it’s enough to give me a few more spoons to deal with unavoidable issues.

I agree with OP, I think there are plenty of abled people who are happy to hear less about all that, whether I’m faking or not. 

Reblogging for your commentary.

I have heard “nobody can have that many things wrong with them” ever since I was hospitalized for a bowel and bladder blockage that coincided with liver enlargement and high liver readings and severe delirium and seizures.  Even though all of those things frigging go together.  So I was in the hospital in a life-threatening situation and my friend posted to my blog so that people knew what was happening, and asshats on the Internet were saying “Sie can’t have that many things wrong with hir, so sie’s a faker.”

Thing is… according to several of my doctors, it’s more common for people to have multiple disabilities or health problems than one single disability or health problem.  People who have one thing wrong with them are the exception, not the rule.  This is backed up by the roommates I’ve had in the hospital — like the woman who had Lesch-Nyhan syndrome and myasthenia gravis and dementia and some other stuff.  And the one who had this whole collection of digestive issues including short bowel syndrome and a colostomy.  And the list goes on.  I rarely have hospital roommates with a single condition.  (But the fewer conditions they have, and the fewer cognitive or mental illness they have or are assumed to have, the better they are treated, I have noticed.)

What my doctors have told me is that basically… there’s a lot of genetic conditions where one gene being tweaked the wrong way will cause problems throughout your entire body.  And there’s also a lot of conditions where one condition will lead to another condition which will lead to another.  Or where the treatment for one condition will lead to another — for instance many people on atypical neuroleptics for psychosis develop diabetes and an assortment of movement disorders, some temporary some permanent (tardive dyskinesia is only the most well-known permanent one, there’s also tardive dystonia, tardive akathisia, etc.).

Here’s the list of conditions on my health record right now:

Autistic disorder, GERD, asthma, status post cholecystectomy, PTSD, migraine, convulsions, neuropathic pain syndrome, hyperlipidemia, abnormal gait, trigeminal neuralgia syndrome, circadian rhythm sleep disorder, neck pain, anismus, thyroid nodule, incomplete bladder emptying, tendinitis, seronegative spondyloarthropathy, central sleep apnea, obstructive sleep apnea, intestinal obstruction, chronic neck pain, atypical facial pain, arthropathy of cervical facet joint, cervical spondylosis without myelopathy, asteatosis cutis, keratosis pilaris, gastrojejunostomy feeding, neuromuscular weakness, adrenal insufficiency, temporal mandibular joint disorder, bronchiectasis, eczema, past history of cold urticaria, environmental allergies, gastroparesis, anxiety, COPD, joint hypermobility syndrome.

And that vague neuromuscular diagnosis is probably soon going to be changed to myasthenia gravis or some other neuromuscular junction disorder.

And yes.  Every single one of these things that can be tested for, has been tested for, and the test has come back positive.  Even things like the myasthenia where we did every single normal test and it came back negative, we just did a single-fiber EMG and it came back abnormal, so now we’re looking into myasthenia again.  And a lot of the above conditions are connected to each other.  They’re not just random conditions that happen to all occur together, they’re things that go together because one overarching condition causes several of the others.  So it looks like 43 conditions but it may be closer to 5 conditions.  Especially since they’ve found that a really large number of autistic people actually have genetic conditions that affect the entire body but happen to go with autism — sort of like Down syndrome, which actually has a high correlation with autism — but this goes undiagnosed most of the time unless they’re looking for it.  But when they take a random sample of autistic people and start looking for that kind of genetic condition, about half of autistic people have them.  I think.  (There was a study.  But I am remembering from like… 2003, so my memory is fuzzy.)

I’ve gotten to the point where when a doctor pulls up my list of conditions they often say something like “So what’s the underlying genetic condition you have?”  They just assume it’s there, even if we haven’t found it, because I have too many things going on.  Plus too many of these things run in my family, for there not to be something genetic going on.  My mother has a list of conditions to rival my own, and she’s been seen at the Mayo Clinic so we know they’re for real.  In fact her doctors and my doctors have been communicating to figure out WTF is going on with the two of us.  I just had her entire medical file sent to my neurologist, which is how he knew to do the single fiber EMG test that just turned up abnormal.

But my point is — it’s extremely normal for a person to have multiple disabilities. In fact, it’s more normal for a person to have multiple disabilities than a single disability.  People like things simple, so on television and in the movies you see people with a single disability.  But in real life you meet people who have bodies falling apart in every conceivable way.  And I blame those media images for people who assume that people with multiple disabilities are either hypochondriacs or fakers.  Because we’re the norm, not the exception, in the actual real world.

And the thing is… I’ve posted my medical records online, in the past, thinking it would convince people I was for real.  It didn’t.  They just used those to invade my privacy further.  So I’m now pretty careful what I post online — I’ll post some test results and things like that, but still, more carefully than I did when I posted reams and reams of files showing my repeated autism diagnoses over the years (with detailed descriptions of my behavior).  Don’t ever let anyone bully you into “proving yourself” in that manner.  It’s not worth it and they are probably actually trying to bully you into giving them access to private information about you, that they can then use against you.  So be careful.

I wish people understood really basic information about disability.

Like:

  • Most people who say we are disabled, are disabled.
  • Fakers cause much fewer problems, than people who go on witch hunts looking for fakers.  (And yes, I’ve been burned by some fakers who were in it for more than just feeling disabled… it’s still not as bad as being falsely accused of being one.)
  • Most disabled people have more than one disability.
  • Many disabilities cluster, causing “one disability” to turn into fifteen different diagnoses very easily.
  • Most disabled people have variable functioning day to day.
  • Many disabled people only need their assistive technology part-time.  It is not “cheating” when someone stands up from a wheelchair, or uses a white cane and then reads a book, or speaks sometimes and types other times.  That is all pretty normal.
  • Looking for fakers does not do “real” disabled people any favors.  You are not helping us.  You are probably hurting us.  The search for fakers routinely results in the death of disabled people — just look at what’s happening in the UK.  Not to mention an increase in hate crimes.
  • You can’t tell by looking at someone whether they’re disabled or not.  You can’t tell by scrutinizing them really hard.  You can’t tell by the scuff marks on their shoes.  Stop watching detective shows and thinking you know all about us.  Stop thinking you know all about us.  Stop scrutinizing us.  Just stop.

And… uh… that’s it for now.  Blech.  From one multiply disabled person to another… I get it, boy do I get it.

12:31pm July 22, 2014
Anonymous asked: My heart goes out to u, it rly does. But u complain about the gov and SS alot. It's a handout, ur situation sux yes. The gov isn't much better. But u can always fore-go it and get a job if u think ur disability could tolerate it. I'm just saying be thankful u get anything, imagine if u were in a third world country. Then you knock them saying they don't consider you a person? Sorry life isn't all sunshine and rainbows. It's a disability, makes life harder whether we like to admit it or not. Vent

genoshaisforlovers:

I debated on whether or not to dignify this with a response but because I know your views are common I’ll speak not just to you but to all watching who has been thinking the same thing.

First things first, what is the extent of my disability and what does that mean when it comes to work and SS. I have a terminal, degenerative mutation which means my body gets weaker and sicker until it can’t maintain life anymore. At this point I have very little body movement, I can’t type (I’m using voice recognition software,) I can’t bath or feed myself. I can’t even drive my wheelchair some days and I only have so much energy some days to swallow or even speak.

That wasn’t always true. When I got out of high school I was well enough to work a desk job or something but there is no compromise with SS. There was no option to get a little less assistance while I worked and then more as I slowly died. They told me not to even try it because my SS would get pulled and getting it back would be a miracle so when I reached this point there would be nothing for me.

Worse, I obviously need a caretaker and that is my mom; the government gives me $600 a month to give her as payment but unlike an actual job she can’t work any other job or that $600 gets pulled. Not even a job in the house. That $600 is supposed to be for her food, housing, and all her bills. Impossible. That’s why we both live off the money I get. Why doesn’t she get a real job? Because I need a 24 hour caretaker. Why not hire a caretaker? Because they don’t work for $600. That would be inhumane.

Speaking of…

You seem to think that I’m being facetious when I say the government doesn’t see me as a human; I am not.

When I was a baby I had to be reported to the government because I wasn’t a child, I was a ward of the state. My parents kept me and had no government assistance but because I was born disabled I was the state’s. I got my own file and where it asked for my identification they stamped RETARD.

I wasn’t allowed to enroll in public school, I was allowed to go to public school classes as a gift to me as long as I did what was required of me, that being social and medical experiments. I almost lost when I refused to be sterilized as I approach puberty. I got lucky because they got a defiant reaction from my family and things were changing in the 90s, they didn’t want it to go to the news. They didn’t want you people to know the government still systematically sterilizes “people.” My classmate’s families did not refuse the treatment.

This still goes on.

I think I gave you a good look at how I’m still not being treated like other adult citizen but let me put a fine point on it…

If I am raped it is considered a “crime against humanity” which is what having sex with an animal is seen as. The convictions are usually heavier on bestiality and if my rapist is a medical professional or care taker it doesn’t get reported.

If I am murdered by a stranger it isn’t a hate crime and, again, the conviction likens me unto an animal.

If I am murdered by a caretaker there is no crime. The court sees this as putting me out of my misery and empathizes with my murderer for having to deal with me on behalf of the state.

But as you said, I could be born in a third world country. So fuck me, right? God bless America.

11:08am July 22, 2014

 Disability Rights Activism for Student Leaders

queerability:

Queerability, in collaboration with campuspride, has created a resource for students interested in engaging in disability rights activism on their campuses! Check it out!

11:50am July 21, 2014
Anonymous asked: What do you think about a potential (and far off) future with robot caregivers? (there is an article on this in the July 19 opinion section of the NYtimes, see if you are unfamiliar with the concept. I would link to it, but this is not an option for AMAs)

It could be good and bad.  I don’t think it would ever replace humans fully, but it could be good for some tasks more than others.

10:51pm July 20, 2014

Reclaiming Ableism IMPORTANT NEW NOTE

IMPORTANT NOTE: People are telling me the #ableism tag gets trolled.  So anyone who doesn’t want to get trolled, should maybe only post in #this is ableism.  And people can choose whether to tag their posts #ableism or not.  All other parts of this post remain the same.

I want to invite everyone who has had an experience with ableism, to post it to the #ableism tag.  Not just now.  But as an ongoing thing.  Not just ourselves, but also when those we care about face ableism, as long as no privacy is being violated.  This would be not just on the #ableism tag, but maybe also a #this is ableism tag as well.  Both tags together, and any other tags we felt fit.

Why do I want this so badly?  Because when I first went on the #ableism tag, easily 95% of the posts were people arguing about whether certain language was ableist.  And then when nondisabled people would list their lists of oppressions, they’d talk all about the oppressions different oppressed people faced.  And then at the end, they would mention ableism.  And their description of ableism would be something like “Don’t say stupid, retarded, or crazy, because it’s ableist.  Countering ableism is about avoiding ableist words.”

That’s why I was so angry.  Not because people were focusing on words, but because it was all people were focusing on.  Meanwhile I’d almost died because of ableism, and people weren’t talking about those kinds of situations much at all.  Not on the #ableism tag anyway.

So here’s what I suggest we do, and I’d love if this really took off:

Any time that we remember, and can write about, and want to write about, an instance of ableism in our lives, whether big or small, past or present.  Then we do so.  And we tag it #ableism.  And we also tag it #this is ableism.  And whatever other tags we find relevant. And we see what happens.  We see whether the tag grows to represent a much broader range of ableist experiences than it currently does.

Mind you, right now the tag is better than when I first saw it.  But there’s still a lot of people who have only linked to it because they’re trying to get someone to quit saying ‘stupid’ in their ask box.  Which may be legit for them, but when it’s half the posts on the #ableism tag, and half the rest are troll posts, there’s something wrong.  And I’d love to see the tag be more representative of the ableism faced by disabled people in everyday life, around the world, every single day.

By the way, if it matters, I’m physically disabled, cognitively disabled, developmentally disabled, learning disabled, congenitally disabled, acquired disabled, stably disabled, progressively disabled, chronically ill, and psychiatrically disabled.  And I’ve had experience in most communities associated with those things, most notably the DD community since that’s where my services come from.  All my family and friends are disabled almost without exception, and I see ableism constantly as a result in my life and theirs.  And while ableist words are part of that ableism, they’re only one part, and not the biggest or the worst, in our lives anyway.

So, go ahead, post your memories and current experiences, about yourself, about other disabled people (if ethical to do so), about current things, about past things, even fears for the future, if it’s about ableism, then #ableism and #this is ableism are the tags for it. If your experience does have to do with words, that’s fine, too — ableism does happen with language, after all.  And we’ll see what happens.  Any takers?