Bad and good news
The bad first, then the good, then what they mean to each other.
Bad: As some of you know, my family members are my primary support folks. I have a hard time with my executive functioning enough to need support in the house keeping. I’ve had life threatening medical issues because of lack of support in the past.
More relevantly, though, is that because of my difficulties with hypermobility and joint damage, I can’t carry my laundry up and down the stairs or down the block to the laundry without accidentally injuring myself. I’ve tried. So I need family members to help out.
My sister and I were supposed to take care of this Saturday after she picked up her fiancee. But once he got picked up, suddenly she had to push it to Sunday afternoon. But she never showed, never called. I didn’t have clean clothing enough, and I leave at 8 am.
My mother came to pick up my dog, as the dog stays with my mother when I travel. She ended up driving me, the laundry bag, and a cart down to the laundry. I did the laundry and loaded it into the cart, and managed to wheel it up to the porch. I texted my sister to see if she’d at least come by to help me get it upstairs and the cart onto the porch.
That was at 9pm. It is after 1 am. I don’t know how I’ll get things packed in time for my trip.
Good: This year, I applied for the adult autism waiver for my state. My request was small, but would have a big impact on my life: around 4hr/week, primarily to help me keep my house safe and myself taken care of even on bad weeks. Additionally, respite type things- rides and escort to community events, for example.
In my state, I’m otherwise not eligible for services. My IQ is too high, and as ridiculous as we all know those tests are, that is how the determine things. It is an ID not a DD system. It took a lot to get the Bureau of Autism Services in place, as well as these waivers.
(There are other people with other DDs, some with extensive care needs, who have to either take the tests without appropriate supports- AAC for example- or go without support because of how they test when supported appropriately. They might have CP, or FAS, or any number of other Diagnosis that are recognized as developmental disabilities, but that might or might not include intellectual disabilities.)
In any case, the Autism waiver is a thing in my state. There’s a list of interest- so officially there’s no waiting list, but that’s just semantics. It’s not a short list. And my support needs are modest compared to some others who might need support in more extensive ways. I had a colleague in the advocacy world tell me that it was next to impossible that I’d get it, at least not any time soon.
He was wrong. We are still trying to figure out how it will work, but I was approved.
Good and Bad together: The plan was to pay family members as staff to do the support work. This is permissible with this particular set of funding. But… My sister is so inconsistent, I’m not sure how I feel about relying on her even WITH money to pay her with. I’m terribly worried- I was very direct with her about how I couldn’t put this off any longer, that I’d be leaving at 8am. I was also very explicit about what the needs are. And still, her fiancee’s band was more important than taking me down, and her friends more important than helping me get my things upstairs.
How am I supposed to trust someone to be a reliable paid support for more time out of the week when something with so short a time spend as carrying bags up a set of stairs is impossible to get her to do?
New Blog Post: Why Privacy Matters
… even when you are willing to disclose.
Tomorrow, Friday, April 26th, 2013 there is going to be a hearing about HIPAA. Well, that’s not exactly accurate- it is about HIPAA for those with psychiatric disabilities or seeking psychiatric care. But no, this isn’t an entirely accurate description either. It is about how some people truly believe that those of us who receive psychiatric care and have our HIPAA rights respected are somehow a threat to public safety.
They believe this even though our providers are mandated reporters, people who have an exemption for threats of violence to others or one’s self. They believe this even though we are more likely to be victims of violent crime than to commit it. They believe this even though when we report on the violence of others, our voices and experiences are discounted.
They believe us as such a huge threat, despite evidence to the contrary, so much that they won’t even be having any of us at the table as they talk about taking away our rights. That we aren’t able to be truthful, competent, or able to speak for ourselves to such an extent that Representative Murphey has gone on air with his belief that we would be incapable of testifying and that the most important conversation is one about parents and families’ experiences. […]
My latest blog post.
TOMORROW: Join us in Defending HIPAA Privacy Rights at House E&C Oversight Subcommittee Hearing
The House Energy & Commerce Oversight Subcommittee will be holding a hearing attacking the HIPAA privacy rights of people with psychiatric disabilities.
DC People: Join ASAN in showing up to show support for defending HIPAA and the right of people with disabilities not to have our health care disclosed without our consent. Show up for disability rights and you’ll get a free orange, “Nothing About Us, Without Us!” t-shirt!
If you can’t be there physically, please mark yourself as maybe! This allows us to get a more accurate head count while still allowing you to show solidarity/being there in spirit.
Where: 2123 Rayburn House Office Building, Washington, DCWhen: Friday April 26th, 2013 8:30am until 11:00am
I obviously can’t make it, but if you can please go to this?
unfit to air: "There's no such thing as a neutral story. But there is such a thing as an honest story."
How did NPR end up repackaging extreme right-wing talking points into a week-long series claiming to tell the “hidden” truth about disability’s explosive growth in our recession economy? Journalist Chana Joffe-Walt says she spent six months “reporting on the growth of federal disability programs”…
Seriously click through. This is LOOOOONG but you should read it.
Vote ASAN to receive Cafe Press's Autism Awareness Month Donations!
It’s that time of year again- the time of year where we gear up for April, aka “Autism Awareness Month”. As in the past couple of years, Cafe Press has people vote on which charities/organizations they will donate to. They started doing this poll as Autistics and our allies protested their previous approach- to just donate to Autism Speaks.
ASAN (the Autistic Self Advocacy Network) is the only organization on the poll run by and for Autistics. The others range from “meh” to espousing bad science, eugenic ideas, or both.
POLL ENDS ON MARCH 8TH. THIS IS URGENT.
You may vote for one Organization to receive half of the donations. The organization with the most votes and the runner up will each receive half. Donations come from 10% of the sales of items using a specified tag.
NOTHING ABOUT US WITHOUT US!!!
It Goes All Ways
New blog post for my blog!
Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities.
When I was 20, I did not love myself. I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.
[tw: rape, murder, ableism] FEMINISM REJECTED ME: No matter what I do or where I go, someone has to mention that we should all take a moment to feel bad for **mothers** who want to murder their disabled children
and sociopathic asshats like Lisa Wade who feel the PRESSING FEMINIST ISSUE is sticking up for mothers who murder their disabled children
NOT DISABLED WOMEN, WHO IF THEY MAKE IT TO ADULTHOOD WITHOUT BEING MURDERED, ENDURE A RATE OF VIOLENCE, RAPE, AND ABUSE THAT IS FUCKING UNREAL.
70%-83% of developmentally disabled women have been, are, or will be raped.
Countless women with disabilities have been, are or will be forcibly sterilized in order to conceal evidence of their current or future rape. INCLUDING SMALL CHILDREN.
Countless women with disabilities are pressured to abort their pregnancies or given misinformation about their ability to have children.
Countless women have been denied basic accessibility tools in order to report their abuse or rape.
Women with disabilities who live in institutions are up to ten times more likely to be abused than women without disabilities.
Shit like this is why Linda Cornelison, a 19-year old woman, was tortured to death by medical staff at the Judge Rotenburg Center, receiving more than 57 applications of “aversives” in the last four hours preceding her death from a perforated ulcer, such as bruising muscle pinches and ammonia pellets broken directly under her nose. NO ONE WAS HELD RESPONSIBLE FOR HER DEATH.
This misplaced “sympathy” is why children like 3-year-old Amelia Rivera are denied lifesaving organ transplants and doctors fell comfortable telling their parents their lives aren’t worth saving.
“FEMINISTS” LIKE THESE ARE MORE CONCERNED ABOUT SYMPATHY FOR WENDY GARLAND’S MURDERERS THAN HER. More concerned about the two women who let her die covered in her own filth in a room over 100 degrees, where she lay bedridden and without medical attention for more than two years.
The media is more concerned about DOMESTIC ABUSER’S STRESS LEVEL then the fact that they’re BEATING THE SHIT OUT OF THEIR WIVES.
When 87% of women with severe disabilities are beaten by their partners, they are told they should “just leave”.
When young disabled women are burned to death by their mother, Lisa Wade asks, but what about that poor murderer???
And THE FUCKING MEDIA LOVES stories like this one that tell a sympathetic tale of a “poor mother” who drowned her disabled 4-year-old daughter in the bathtub, who has been released and plans to have more children, and has been ruled “not a threat” to children.
Laura Cummings, raped and tortured to death by her mother and other family members, and Lisa Wade would like us to sympathize with these “poor mothers”.
Zahra Baker, a disabled 10-year-old girl, was raped, murdered, dismembered and fed to wild animals, and Elisa Baker, her stepmother, was sentenced to 15-18 years for second degree murder…SHE FACES MORE TIME ON UNRELATED DRUG CHARGES THAN SHE DOES FOR THE MURDER. Her father received a 30-day suspended sentence for unrelated misdemeanors.
Betty Ann Gagnon, 48, lived most of her life on her own until she was beaten to death by her family after spending the previous FIVE YEARS IN A CHICKEN WIRE CAGE AND TENT SMEARED WITH HER OWN FECES. HER FAMILY WAS *NOT* CHARGED WITH MURDER.
THESE ARE NOT ISOLATED EVENTS.
THIS IS SYSTEMATIC VIOLENCE IN A WORLD THAT TELLS PEOPLE IT’S A-OK TO TORTURE, RAPE, AND MURDER DISABLED WOMEN AND ACTIVELY FACILITATES THEIR ABUSE, RAPE, AND MURDER.
“FEMINISTS” WHO DON’T UNDERSTAND THAT PRO-CHOICE WORKS BOTH WAYS
WHY WOULD I SUPPORT A MOVEMENT THAT WOULD BE GLAD TO SEE ME DEAD?
Amazing response.
New Blog Post! A reminder from the fog
I’m frustrated with myself. A part of me spends time berating myself, reminding me that I can and do write fairly well some times so I ought to be able to churn something serviceable out when I want or need to. It’s more than writer’s block- I get that too sometimes. I have all the ideas there, but the brain fog has been interfering with my ability to put them into the text box coherently.
I know where the fog comes from- it’s my fibro and arthritis pain mixing with my neurology. But I also know where the frustration and the self doubt comes from too. I’m not the only one struggling with that one.
It’s been a long, postless summer on my part. But the brain fog cleared just long enough to churn out something last night. Admittedly, the time since my last post shows, but still.
Loud Hands Project Website || Sections Preview!
The Loud Hands Project is designed to serve as a library and celebration of autistic culture for the autistic community. The initial sections of content include:
101: This is a place people can go to find basic explanations of the social model of disability, neurodiversity, self advocacy, etc. It is structured around core vocabulary and concepts, and presented as an interactive concept map. This is also the place for links to some basic, foundational documents: Don’t Mourn For Us, the ADA, etc. This is really foundational stuff for understanding neurodiversity, disability rights, and self-advocacy.
Historical Foundations: This is a place to explore the history and heritage of the disability and autistic communities. The Loud Hands Project has big plans for this section, including an eventual archive and interactive timeline. Initially, there will be a page of links to go to for the general history—although we may eventually develop our own content here, the initial goal is to make all of the great, comprehensive content on disability history already available online easier to find and conceptualize. We’re collecting an archive of founding documents of the autistic community, and those would be stored here, along with additional projects LHP is planning in the future.
Community Conversations: A huge component of the website, and one of its main purposes, is to facilitate the occurrence, several times a year, of community conversations around autistic identity, neurodiversity, self-advocacy, and other related concepts of relevance to our community. Examples of the conversations might be: what you wish you could have told yourself about growing up autistic; a response to a highly publicized act of murder, bullying, or abuse against an autistic person; a call to share writings or works by autistic people that made a profound impact on your life; what does being autistic mean to you; etc. A call for submissions will go out, an administrator will assemble & upload the results, and on the appointed day, a page will be unveiled where the responses can be viewed. It’s similar in concept to a blog tour, but submissions will encompass multiple medium (film, poetry, essays, letters, visual art, etc.) and have an extended time frame for preparation. Each Community Conversation will be archived on the site.
Blog: Content on the blog, as on all pages, might be written, visual, video, or a combination. We are looking for bloggers!
Anyone willing to contribute short writing for the 101 and history sections should email jbascom@autisticadvocacy.org
Quick!
I’m temporarily unfoggy and writing. I need Some links to some good posts on Inspiration porn, preferable not from the disabilityandrepresentation blog. THanks. <3
![adelenedawner:
One of a set of communication cards I’m working on.
[In grey text on a light yellow background, the words “Like many disabled people, I am picky about who I allow to help me in ways that go above and beyond normal interaction. We do this because, as vulnerable people, it is very easy for us to be taken advantage of, even unintentionally, by people who we’ve allowed to get close to us. I would appreciate it if you would respect my right to make decisions about whether I need extra help and who I get it from. Thank you.”]](http://25.media.tumblr.com/tumblr_ma6vdoZXtm1qg7evbo1_500.png)
One of a set of communication cards I’m working on.
[In grey text on a light yellow background, the words “Like many disabled people, I am picky about who I allow to help me in ways that go above and beyond normal interaction. We do this because, as vulnerable people, it is very easy for us to be taken advantage of, even unintentionally, by people who we’ve allowed to get close to us. I would appreciate it if you would respect my right to make decisions about whether I need extra help and who I get it from. Thank you.”]
This is Dangerous
Those of you who keep up with ASAN already know about this. For everyone else, the Governor of Washington is challenging the protections the Olmstead Decision affords people with disabilities. This decade-old court case has moved people from institutions to their communities. Sign the petition. The appeal it addresses threatens the freedom and welfare of some disabled people. Consider contacting the Governor, especially if you are voter there.
Third Try
Tumblr has been eating my posts. This originally included a response to Scarborough’s comments. I will not rewrite that. Others have rebutted it. Not for the first time, I was late because of the car. The response to Autism Speaks is also unimportant. They will not change because I ask. I still have something to say: in the wake of commentary on national television to the effect that we are ticking time bombs, I saw autistics defend our place in society in an unacceptable way.
”We are not mentally ill” is no defense. Yes, I saw that written outright. Saying we are not like those people is visting the palpable sense of awareness shoved on us moments before on someone else. It short-sighted, unethical, and cruel. It is two oppressed groups, in some opinions, two subgroups of one oppressed group, allowing themselves to be pitted against each other. Scapegoating one group of people, saying we are worthy because we are not them, is as inhumane when we do it as when anyone else does. Bigotry is bad from any source.
