Wednesday, December 23, 2015

#CrippingTheMighty

It is hard being autistic when the public perception is against us. As an autistic, I am disabled. It is hard being disabled when the public perception is against us. It is hard when I see vast amounts of information and resources aimed at caregivers. And that is not always bad, when the stories are respectful and have insight from disabled people! Caregivers need to know how to caregive respectfully and responsibly! But so much of it is told from their perspective, and many of the stories are not respectful. The media matters and though the media reflects society, society also picks up things from the media.

What should we ask for?

  • They need to pay the disabled writers who still are willing to publish with them.

A fair wage, not just scraps, too.

  • They must make at least 50% of their editorial staff be disabled editors.

They must have real power and a real say.
  • Signal boost and amplify writing by disabled writers as the majority of their pieces.

No more inspiration and pity parade stories, please.

  • Stop using this as a purely money making platform and actually post things that support
    disabled people

The best way to do that is bullet point three. Admittedly some disabled people inspire me. Not because they're disabled, but because they are awesome. But post stories by disabled people that are not just inspiration porn, but practical. Life narratives are fine and we could all use role models, but we disabled people also need more practicality and things that give us tips on how to get around in day to day life.

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Wednesday, December 16, 2015

My Autistic Wishlist

There is an autistic wishlist hashtag event going on over on Twitter. It is aimed at advocacy organizations.

This particular autistic wishlist is not directed primarily at advocacy organizations. It’s not going in the hashtag.

It is directed at a community constantly in pain. A community constantly expanding outward, pushing against the fringes. A community that could probably stand to be gentler of people with clumsy language and communication disabilities (see my Autistics Speaking Day post).

My autistic wishlist is that our community can handle the constant pain of both outside forces, and turning inward at each other. That our community, expanding outward and challenging perceptions, can introspect long enough to fight together and dispel the distrust constantly aimed at each other.

Yes, I do have a long list of things I wish for with advocacy groups. But it is alongside a deep desire for our existing community what I have tried to outline above.

If you are with me, this journey will be hard. But I will support you any way I can.

Friday, December 4, 2015

the world is larger than my recycled words

How do I feel? The world is larger than the recycled words I can spit out to try to convince people of disabled people's value. On December 2, I started my second day of work; on December 2, gunmen shot up Inland Regional Center in San Bernardino, CA. It was the second mass shooting of the day. Inland Regional Center served people with developmental disabilities. I followed a new routine, too tired in the evening to draft a blog post as my newsfeed exploded with the news.

Speaker Paul Ryan announced his intent to push for the Murphy Bill. The shooters shot up a center to serve people with developmental disabilities. The Murphy Bill intends to curtail the rights of people with psychiatric disabilities.

On December 2, I also received an action alert in my inbox from the Arc. The Senate was about to repeal parts of the Affordable Care Act – parts that have helped people with disabilities. On December 3, my Facebook trending topics switched to Planned Parenthood as the Senate bill passed their version of the bill to federally defund Planned Parenthood. A sidenote was that the bill also repealed the Affordable Care Act, which has helped many people with disabilities. President Obama is expected to veto the bill.

People expressed shock and sorrow that someone would do this to a center that serves developmentally disabled people. People fawned over the woman who thanked an autistic person for decorating a cake. Representatives and Senators tweeted heartbreak about San Bernardino. They've done their good deed now, right?

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Please explain to me how it is a good deed to be objectifying autistic people into inspiration porn for decorating a cake. There are far more extreme examples, like having to hold a Day of Mourning: Remembering Disabled People Murdered by Caregivers because so many people murder the people they are supposed to be providing care and/or support for. Then explain to me how people can express shock that someone shot up a center that serves developmentally disabled people.

Please explain to me how it is a good deed to tweet heartbreak about San Bernardino when Congress just decided to repeal key provisions of the ACA that would materially help disabled people. Help, rather than just fawn over someone decorating a cake and think they're helping, or assigning buddies in class to that poor disabled kid, or whatever.

Congress is moving the Murphy Bill rapidly through. H.R. 2646 is the, as Ari Ne'eman put it, “perversely named” the Helping Families In Mental Health Crisis Act.

The Murphy Bill would fundamentally strip people with psychiatric disabilities of their rights. It would
       community-based services.
  • This includes cutting the budget for the Substance Abuse and Mental Health Services Administration (SAMHSA)'s community integration projects.
  • H.R. 2646 will also encourage states to allow forced-medication programs. These would be through court systems. The best way to help people get mental health treatment is to reduce stigma, make it available, and provide support. The solution is not forced treatment.

It was introduced in the wake of Sandy Hook in 2013 to manipulate the public. Don't let them.

Call or write your representative today. Tweet at your legislators. Find your rep at http://www.house.gov/representatives/ and then use the generic contact us form. Call to the Capitol Switchboard at 202-224-3121 and ask for your representative and ask them to oppose the Helping Families in Mental Health Crisis Act (HR 2646).

There is a federal relay service for d/Deaf people listed at the bottom here  http://www.house.gov/content/site_tools/accessibility.php

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Explain how the Murphy Bill helps anyone with disabilities. Explain how fawning over a cake helps people with disabilities.

Explain how the “good deeds” work then.