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?
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 email@example.com
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
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.
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.