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8:27pm August 20, 2014

la-negra-barbuda:

it’s okay to have a disability/chronic illness and to avoid attending protests and rallies for your own health and safety. it really is okay. you don’t have to apologize to people who don’t understand. not being in attendance doesn’t invalidate your activism. you can still continue to be involved in other ways. your activism is valid.

1:13am August 20, 2014

So maybe this is me being a bad disability person but

nicocoer:

I don’t have any problems with the ALS challenge. But neither does my (step) Abuela, who has ALS herself. sure it’s a bit wacky, but people are donating money. 

Read More

Never worry about being a “bad disability person” when lives are on the line and you’re sure you’re doing something important.  Reality trumps ideology, every time.

9:16pm August 19, 2014

I just had a semi-hypnagogic revelation that is important for once and not just silly.

I was reading words on a typed screen.  They said something like, “Watch out when you hear one person telling another, "you didn’t even get that right, real autistic people flap their hands top to bottom, they don’t shake them."  When people start telling you that your expression of your own disability is inauthentic.  More importantly, though, when you hear someone gloating like that about another person — “Ha ha, they tried to get it right but they totally failed, real disabled people don’t think/speak/move/act like that” — that is a warning sign.  It’s not a warning sign against the person who supposedly “couldn’t get it right”.  It’s a warning sign to get the hell away from whoever is spreading gossip like that.  Don’t believe their claims to expertise on how “real disabled people” operate.  Just stay away.  Don’t repeat their claims.  Don’t believe their claims.  Speak up about it if you see other people believing them.  Because they are bullies.

And they are bullies that are using a tactic.  They are saying “I am smart enough to see through this person’s act, and if you’re smart too, you can see through it.  If you can’t see through it, you’re stupid and gullible.”  And that is a tactic that people who’ve been called stupid and gullible our entire lives are very prone to falling for.  Don’t fall for it.  If someone tries to manipulate you by saying you’re stupid and gullible if you don’t believe them, something is wrong.  With them.  Not you.

My hypnagogic hallucination was more pithy but this will have to do.

9:21pm August 17, 2014

 http://karalianne.tumblr.com/post/94963542666/athomewithlana-abled-persion-or-disabled-person

karalianne:

athomewithlana:

karalianne:

thisisableistasf:

karalianne:

athomewithlana:

abled persion or disabled person who doesnt have reading comprehension issues:

*writes 10 paragraph long dissertation on ableism, each paragraph 8-12 lines*

*doesnt put a ‘tl;dr’ at the end*

That’s not actually fair.

I know at least one person who writes really long…

Oh for the -

I’m out of spoons, can someone take this please?

Because all I’m hearing is “not all neurotypicals!!!”

Oh my God.

I have ADHD. The person I was talking about is autistic.

What I’m saying is that having good reading comprehension has nothing to do with writing ability.

Comprehension is not the same thing as expression, and vice versa.

That is literally all I meant. I’m pretty sure that’s what I said.

I didn’t say reading comprehension had anything to do with writing ability; what I meant was that the people who write these dissertations, abled or not, do not take into account those of us who would really like to read them but literally can’t because of the way they’re FORMATTED.

Except that saying that people who have good reading comprehension make these posts that are formatted with really long paragraphs is implying that comprehension is linked with writing ability, which isn’t true.

Like I said in my first response, there are people who write long posts with long paragraphs who have trouble reading their own posts because of how they’re formatted, but that’s how they were able to say the thing and trying to say it differently isn’t a thing they are able to do either.

I myself have ADHD, and I often can’t read long paragraphs or even long posts (even if they have short paragraphs) because while my reading comprehension is good my attention span isn’t so hot.

I try to keep my paragraphs short, or at least to vary their length, but I can’t always do that because the only way I can say a thing in the moment is the way I’ve written it. On my personal blog, I can try and rephrase things for people if they ask but most of the time I need the question to trigger different words.

Basically, sometimes people have disabilities that interact poorly with other people’s disabilities, and sometimes people have multiple disabilities that interact poorly with each other (like, in the same person).

Yes, people need to remember that not everyone can read long posts that have long paragraphs. At the same time, we need to remember that not everyone who needs short posts and paragraphs can actually WRITE short posts and paragraphs.

I write things.

I can’t summarize long things to make them shorter.

I can’t “pad” short things to make them longer.

They come out the length they come out.

This is EXPRESSIVE LANGUAGE.

This is not READING COMPREHENSION.

My reading comprehension sucks.

I am totally incapable of reading most of my long posts.

This factors into my total incapability of summarizing my long posts.

I do every, single, fucking, damn, fucking thing I can to make it easier because I HAVE READING COMPREHENSION ISSUES AND I CAN’T READ IT EITHER AND I KNOW WHAT IT IS LIKE.  I do everything I can.  Sometimes I have written myself into meltdowns trying to make things easier to read.  As in, meltdowns that may have resulted in long-term brain damage, so fuck anyone who thinks I don’t try.

And to be told I’m just not trying is the end.  I shouldn’t even fucking write anymore.  It doesn’t matter what I say.  It doesn’t matter what I write.  It doesn’t matter how many times I explain that receptive language and expressive language are totally separate skills and that the ability to have one is not the ability to have another.  It just doesn’t matter.  I explain it constantly, I explain it constantly.  Constantly.  And it doesn’t matter.  Nobody gives a shit.

All they care about is burying the complicated issue of competing access needs under a pile of “You should be able to do this because I can’t read it so you should just be able to summarize it or do something to make it so I can read it.”

I’ve been trying for years.

I can’t come up with something.

The only thing that works.

The only thing.

Is a community where people set up a translation system where people willing and able to translate, translate from (person who writes what someone can’t read) to (person who wants to read what the first person wrote).  This isn’t just about length, it’s also about grammar and lots of other things that can affect both comprehension and expression.

The trick?

It only works if everyone assumes good faith.

It only works if people aren’t assuming abilities that don’t exist, in people who don’t have them.

It only works if everyone wants it to work and tries really hard to make it work.

And I don’t see that happening here.

Not when someone tells me I have good reading comprehension because I can’t control the length of what I write.

Not when someone makes it “ableist” to write long things when it’s ableist to demand that a disabled person write in a way they can’t write, or just stop writing altogether, because for people like me those are the only two options.

It’s not ableist for me to write things you can’t read.  Not when I’m not capable of writing otherwise.

It’s ableist for there to be no system set up to translate.

There should be a system.

We should be organizing a system.

But fuck it all, I’m not going to explain this again, I’m not going to go through the anguish again, I’m not going to go through the utter hell that is trying to explain my abilities when nobody wants to know because my abilities don’t fit what they want me to be capable of.

Bonus:  I can’t read what I just wrote.  I can’t read what I just wrote.  I can’t read what I just wrote.  So how the fuck am I supposed to summarize what I can’t even read?  Oh yeah, and I can’t read what I just wrote, because I have massive reading comprehension issues.  And they’re acting up in particular tonight.  I have language comprehension issues in general.  I compensated by learning to regurgitate and spit out huge numbers of words, but that does not mean that I have no reading comprehension problems.  I can write without being able to read one single word at all.  FFS.  Please.  I can’t take this anymore.  Someone make it okay?

8:54pm August 17, 2014

 Click here to support Send Cara to TASH! by Cara Liebowitz

flutterflyinvasion:

I’m raising money so that I can present at the TASH conference in December.  My presentation is on how the Internet can advance self advocacy and the disability rights movement and it would be a wonderful example of theory in practice if Tumblr helped me get there!  Please donate, and even if you can’t, please signal boost!

I wish TASH was affordable.  It’s why I’ve never been there, even though I think I was invited to keynote once.  It makes me nervous, because a place that isn’t affordable to get to, especially one as seemingly well-off as TASH is, just… makes me nervous.  Their membership fees are so high I had to stop even being a member years ago.  Good luck.

10:45pm August 16, 2014

realsocialskills:

How do you feel about self diagnosed autistics
realsocialskills said:
 
I think that autistic people are autistic whether or not that they have been diagnosed. 
      
I think people often know that they are autistic without a doctor telling them that they are. I have absolutely zero problems with someone thinking that they are autistic or wanting help. Even if it turns out that they are mistaken and not actually autistic. That happens sometimes, but I don’t think that’s hurting anyone, and I don’t think it’s a legitimate reason to object to self-diagnosis.
  
I think that people with disabilities need support, coping methods, and accommodations whether or not they’re diagnosed with anything.
  
I think we should move towards a world in which accessibility is seen as routine and normal rather than something people have to beg for access to. As it stands now, support resources for people with disabilities are often drastically limited. That is not the fault of people who identify their problems and support needs without medical diagnosis. Resources are scarce because our culture doesn’t value people with disabilities enough to make support readily available, or to routinely make accessibility and inclusion part of planning in schools, organizations, architecture, workplaces, or anywhere else. That’s the problem. Self-diagnosers who want help are not the problem.
  
There’s this notion that people with disabilities who need to do things differently are somehow trying to get away with something, and that they need to pass an extremely high bar to prove that they can’t help it. That attitude hurts all of us. Hating people who self-diagnose plays into that attitude, and it doesn’t help anyone.
8:28pm August 15, 2014

From DRNPA

nicocoer:

Take our survey about ending segregation!

Background information:
 
There are new federal regulations for Medicaid home and community-based waivers.  These new regulations have requirements for person-centered planning.  These new regulations also describe how settings must be integrated in the community.  These new regulations are for all home and community-based waivers.  Click here for more information.   
 
The Department of Public Welfare (DPW) has to submit to the Centers for Medicare and Medicaid Services (CMS) a draft transition plan for making sure all waivers follow the new federal regulations.  The draft transition plan will soon be out for public comment.  Click hear to learn about the Department’s upcoming public forums
 
Survey information:
 
Take DRN’s survey about ending segregation under these new regulations.  Learn about the new regulations.  Tell us what is important to you.  Tell us about waiver settings that are not integrated.  Click here to take our survey.
 
Your participation in this survey is important.  Thank you!
 
For more information, contact:
 
Chava Kintisch, Esquire
Director of Civic and Government Affairs
Disability Rights Network of Pennsylvania
ckintisch@drnpa.org
(215) 238-8070, extension 210
www.drnpa.org
Offices in Harrisburg, Philadelphia, and Pittsburgh
 
Email or call Chava Kintisch if you need a paper copy of the survey.

8:06pm August 14, 2014

platitude-platitude-platitude:

Guilt can be huge in someone that is mentally or chronically ill.

To see and hear the tragedies, the injustice, suffering, and anger all around you, and just not have the mental of physical capacity to care about it is heart-wrenching. You feel selfish, guilty, bad.

Please remember that putting ones health first does not equal apathy.

Please.

8:04pm August 14, 2014

 Fundraising for new anthology on autism and race by autistic people of color

namelessthingsdismantle:

I’m editing this awesome new project in partnership with the Autism Women’s Network, and I hope folks will consider donating if they can to help make this a reality. 

Stay tuned in the next few days, because we’ll be releasing the formal call for submissions then! Until the official thing goes out, questions can be emailed to lydia@autistichoya.com. Thanks everyone!

Leaving Evidence

I am a proud autistic of color working with the Autism Women’s Network to create the first ever anthology of writings by autistics of color about our lives, our experiences, our histories, our communities, our struggles, our passions, and our resilience. Our stories deserve to be told both for us and for future generations that will come after us. They are stories of segregation in education, police brutality, families of birth, adoption, and choosing, ableism connected to racism, finding community, making home, survival, and resilience.  They are stories of being autistic in a neurotypical world and stories of being racialized in a white-dominant world. 

Disabled, queer, and racialized activist Mia Mingus urges us to leave evidence that we existed so that our stories and our lives will not be erased or forgotten. The Autism Women’s Network is committed to supporting projects that connect disability rights to other struggles and movements. This anthology will help us explore new ground for autistic communities of color whose stories need to be told. 

As an autistic person of color, it’s not uncommon for me to go to autistic community events and find myself to be the only non-white person there or sometimes one of only a few. Yet it is impossible to separate my experiences as autistic from my experiences as a transracial East Asian adoptee. Here’s the important part — I’m not the only one. We are everywhere. Indigenous and native, mixed-race and multiracial, Black, Brown, South Asian, East Asian, of color, racialized — and autistic. Our lives and our stories matter. 

We invite you to support us in amplifying our voices. 

What We Need

We are raising money to cover the costs of printing and publication, which include print and alternate formats, ISBNs so we can place copies in libraries, and small stipends for the project leads. 

Additional funds raised will go toward increasing availability of alternative formats, including online access. Any further additional funds will go to the Autism Women’s Network to support other projects empowering autistic women.  

Risks & Challenges

Because we are soliciting contributions from people who may have multiple disabilities, chronic pain or other illnesses, and language and communication impairments, it is possible we will fall behind schedule. We aim to finish publishing the anthology in 2015, but may need to be flexible about deadlines. 

Who We Are

My name is Lydia Brown (though you might know me better as Autistic Hoya). I’m an activist and writer focusing on violence against multiply-marginalized disabled people, including hate crimes, policy brutality, and prisoner abuse. At present, I am serving on the board of the Autism Women’s Network. I am also president and co-founder of the Washington Metro Disabled Students Collective. I have worked with the Autistic Self Advocacy Network’s national office, and am a past Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. In 2013, I was honored by the White House as a Champion of Change for disability rights. 

The mission of the Autism Women’s Network (AWN) is to provide effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women.  AWN welcomes all women, supporters of women, those who have at one time identified as women and non binary gender variant individuals.  AWN recognizes and affirms the gender identity of each individual.  AWN also welcomes the support and community of those who do not and have not identified as women as allies to support us in our work.

Other Ways You Can Help

You may not be able to donate money, but that doesn’t mean you can’t help:

  • Ask folks to get the word out and share our fundraiser on social media and in your network! (Indiegogo has some nifty buttons that let you do that.)
  • Consider submitting your own writing or suggesting autistic people of color who may be interested in submitting! 

Thank you so much for your support. Onward!

7:06pm August 14, 2014

 Autism and Race Anthology - indiegogo campaign

otipemisiwak:

We matter. We invite you to support us in amplifying the voices of autistic people of color.

Leaving Evidence

I am a proud autistic of color working with the Autism Women’s Network to create the first ever anthology of writings by autistics of color about our lives, our experiences, our histories, our communities, our struggles, our passions, and our resilience. Our stories deserve to be told both for us and for future generations that will come after us. They are stories of segregation in education, police brutality, families of birth, adoption, and choosing, ableism connected to racism, finding community, making home, survival, and resilience.  They are stories of being autistic in a neurotypical world and stories of being racialized in a white-dominant world. 

Disabled, queer, and racialized activist Mia Mingus urges us to leave evidence that we existed so that our stories and our lives will not be erased or forgotten. The Autism Women’s Network is committed to supporting projects that connect disability rights to other struggles and movements. This anthology will help us explore new ground for autistic communities of color whose stories need to be told. 

As an autistic person of color, it’s not uncommon for me to go to autistic community events and find myself to be the only non-white person there or sometimes one of only a few. Yet it is impossible to separate my experiences as autistic from my experiences as a transracial East Asian adoptee. Here’s the important part — I’m not the only one. We are everywhere. Indigenous and native, mixed-race and multiracial, Black, Brown, South Asian, East Asian, of color, racialized — and autistic. Our lives and our stories matter. 

We invite you to support us in amplifying our voices. 

What We Need

We are raising money to cover the costs of printing and publication, which include print and alternate formats, ISBNs so we can place copies in libraries, and small stipends for the project leads. 

Additional funds raised will go toward increasing availability of alternative formats, including online access. Any further additional funds will go to the Autism Women’s Network to support other projects empowering autistic women.  

Risks & Challenges

Because we are soliciting contributions from people who may have multiple disabilities, chronic pain or other illnesses, and language and communication impairments, it is possible we will fall behind schedule. We aim to finish publishing the anthology in 2015, but may need to be flexible about deadlines. 

Who We Are

My name is Lydia Brown (though you might know me better as Autistic Hoya). I’m an activist and writer focusing on violence against multiply-marginalized disabled people, including hate crimes, policy brutality, and prisoner abuse. At present, I am serving on the board of the Autism Women’s Network. I am also president and co-founder of the Washington Metro Disabled Students Collective. I have worked with the Autistic Self Advocacy Network’s national office, and am a past Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. In 2013, I was honored by the White House as a Champion of Change for disability rights. 

The mission of the Autism Women’s Network (AWN) is to provide effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women.  AWN welcomes all women, supporters of women, those who have at one time identified as women and non binary gender variant individuals.  AWN recognizes and affirms the gender identity of each individual.  AWN also welcomes the support and community of those who do not and have not identified as women as allies to support us in our work.

Other Ways You Can Help

You may not be able to donate money, but that doesn’t mean you can’t help:

  • Ask folks to get the word out and share our fundraiser on social media and in your network! (Indiegogo has some nifty buttons that let you do that.)
  • Consider submitting your own writing or suggesting autistic people of color who may be interested in submitting! 

Thank you so much for your support. Onward!

SIGNAL BOOST THIS! It’s incredibly important that autistic people of colour voices be heard!

1:34pm August 13, 2014

im really glad we’re talking about not discriminating against disabled people

lumpenspaceproletariat:

but i wish we had more conversations about how this works in practice rather than just theory

like e.g. partybottom's fantastic piece about how to be a good roommate to someone living with HIV/AIDS

or how to relate to people who have difficulty with relationships of all kinds, mood disorders, instability, difficulty functioning, or get set-off into what could be perceived as ‘anti-social behavior’

or how to be accommodating to people with mobility issues and chronic pain that goes beyond ‘dont ask us to walk faster’ 

i’ve met lots of people who claim to care about disabled people but none of them cared enough to listen when i explained how certain interactions were incredibly triggering and sent me into a fight-or-flight response because my brain is constantly swimming with cortisol 

few people understand that when i forget things about them its because i have brain damage and not because i dont care

few people understand that people who experience psychosis don’t need to be talked down to or treated with less than the same full human dignity as other people

idk i just see so so many posts, ‘all disabled people are valuable’ and that’s very true but not so much about how abled people can make room for us in activist spaces, community spaces or even in interpersonal relationships

the relationships of mine that worked were people who understood my problems, usually cos they had similar ones, and were understanding and flexible. Most people, especially in an emotionally charged situation, will steamroll over you to be right or get what they want.

This is all ableism as well

12:24pm August 12, 2014

Acceptance is the opposite of giving up

realsocialskills:

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

tl;dr Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.

2:43am August 12, 2014

Queerability Mourns the Loss of Robin Williams

queerability:

Queerability mourns the loss of Robin Williams. Robin Williams was open about having bipolar disorder, and we are so appreciative of his bravery for being outspoken about his mental health disability. Unfortunately, he felt his life was not worth living and decided to take his life. 

Queerability remains steadfast in our commitment to advocate for support and acceptance of people with mental health disabilities. Everyone’s life is worth living, and suicide is not the answer. If you are thinking about taking your life, we encourage you to contact a suicide hotline or someone you trust. It’s ok to reach out for help. 

Queerability sends our heartfelt condolences to Robin Williams’ family, friends, and fans.

7:01pm August 11, 2014

I can be romantic too

belleandthetardis:

Tumblr needs to learn the difference between romanticizing disabilities and illnesses and allowing characters with disabilities and illnesses to be romantic.

6:39pm August 11, 2014

 George Takei: Take Down the Image of the Wheelchair User Standing Up

queerability:

Queerability expresses our profound concern about George Takei and an image he shared. The image was of a woman who uses a wheelchair standing up to reach a bottle of alcohol, and the image was captioned with  ”There has been a miracle in the alcohol aisle.” This image reinforces dangerous misconceptions and stigmas around people with disabilities. Some wheelchair users are able to stand or walk for brief periods of time, but this does not make the wheelchair user’s disability any less significant. 

We are also concerned that George Takei refused to listen to people with disabilities and our allies when the disability community expressed its concerns about the image to George Takei. George Takei, an openly gay man, has been a strong voice for the acceptance of LGBTQ people, however; we are concerned that he is ostracizing people with disabilities, especially LGBTQ people with disabilities, by sharing this image.

Queerability urges George Takei to take down the image and issue an apology to people with disabilities. We also urge the disability and LGBTQ community to sign our petition and share it widely to ensure that George Takei gets the message that sharing these kinds of images is unacceptable and that they reinforce prejudice and stigmas surrounding people with disabilities.