30 July 2012
They ask me what I mean, and I speak,
but my speech has no meaning,
and they give it no value.
Who am I to speak?
I know no one, am no one,
and can make no list of glories,
and they know this better than me.
I have all the people in the world around me,
but no one to listen to me and crave me,
and I cannot understand their language,
and they say I have none.
Why can't I cry?
They deny me even that comfort,
and I am desperate for bitterness and rage,
and they scorn that I could imagine aposiopesis.
Why can't I have solitude?
Information everywhere and too much to do and no time and no space,
and people suffering with no advocate,
and they would mock the day I betrayed them with silence.
I have all the words in the world waiting on the cusp of my lips,
but no one to listen to me and crave me,
and I do not speak their language,
and they will not let me simply be.
I am afraid of my awakening,
And they tell me I will not have one,
But I know how it will come—
They will not see as I slip from knowing to believing.
29 July 2012
26 July 2012
20 July 2012
19 July 2012
a.) It was envisioned by non-disabled people, which instantly raises a red flag.
b.) They use ableist language, like “less able.” Another huge red flag.
c.) It’s supposed to be “safe?” WTH? Only disabled people get to determine what are “safe spaces.” From a non-disabled person, that just reeks of paternalism and infantilization.
d.) It’s intended to be a segregated community for disabled people, created by non-disabled people (see a.), which flies in the face of either intentional communities created by disabled people as safe space of our own OR integrated spaces welcoming and accessible to all. For example, there are already vibrant disability and disabled communities on mainstream sites like Facebook and Tumblr and in the blogosphere.
e.) Despite a claim to serve all people with disabilities, it seems to be focused on people with physical disabilities, though perhaps not necessarily.
Autspot is only different in that a.) it focuses specifically on autism, and b.) rather than directly paternalizing or infantilizing Autistic people, it pretty much actively excludes them as the last time that I checked, the site interface claimed to be a community for the "autism community," which seemed to mean pretty much anyone with a connection to autism except Autistic people. Like Disabilinet (and no, I am not providing direct links to either site; you can find them easily on your own), it was conceived and created by non-disabled people as something almost charitable to benefit disabled people (or, apparently, our poor families.)
Don't you love segregation and infantilization? Yeah, me too.
18 July 2012
I spent close to forty-five minutes wandering through the cacophonous crowds, wading through a sea of Tea Party protesters who I later learned were accompanied by Michele Bachmann. There were signs and coordinated t-shirts both for and against the ACA, with one particularly creative Republican t-shirt reading "Correction Day: November 6, 2012." (I politely declined when offered.) Hundreds, possibly thousands, of people had crowded on and around the Supreme Court front steps, spilling across the street and in a few blocks in both directions, where a line to gain access to the courtroom itself snaked for several blocks--many waiting in line had camped overnight for a chance to make it inside.
The heat was stifling, and the humidity soaked my shirt. I've had some pretty awful experiences with heat exhaustion and heat stroke, so I knew my body was approaching its limits. I had been unsuccessful in locating the middle-aged disability rights activist in a chair who I'd been told would be there, and I desperately needed to be in an air-conditioned location to prevent the onset of migraine, severe dehydration, and other dangerous symptoms of heat exhaustion or heat stroke. (Been there, done that, didn't particularly feel inclined to repeat it.)
I excuse-me'd past the amorphous group of libertarians and approached the bottom of the steps, where there were several police or security officers. "Excuse me, can I go inside the building?" I asked.
"That's a line to go into the courtroom. The end of the line is all the way back there." He pointed, and I could see the line wrapping for several blocks.
I shook my head. "No, I just want to go inside the building, like the main lobby. Can I do that?"
"Yes, you can go inside the building, but you can't go inside the courtroom."
"Okay, thanks. Where do I go to do that?" I asked. He indicated another line on the left-hand side of the courthouse. I thanked him and headed in that direction. Before I could make it, another officer stopped me at the steps, and asked where I was going. "The officer over there told me to get into this line to go inside the building," I said, pointing in the general direction of the first officer. The second officer nodded and let me continue.
I came to stand behind a few other people, more than four, but not more than ten, waiting in line to pass under a covered entrance into the Supreme Court building. From brief exchanges with the people in line, I quickly realized that I had somehow been ushered into a line of people who were going to go into the courtroom. "You shouldn't tell people how you got in this line," said the young woman in front of me. "You're very lucky. Some people camped out all night to get in this line." When they finally let us into the building after a few minutes of waiting in the rather short line, I welcomed the reprieve of the air conditioning. (I had successfully predicted that the building would be air-conditioned.)
We passed through two rounds of security. The first was pretty standard. Our bags and all metal items go onto the conveyor belt or in little trays to go through an x-ray machine, while we passed through a standing metal detector. (I successfully managed to not set off the metal detector. Very proud.) At the second round of security, we had to check all of our bags and electronic devices in metal lockers and a coat room. (I had to shell out a quarter to put my laptop into one of the metal lockers. I think it was worth it.) Ladies were permitted to take purses, but absolutely no electronic devices whatsoever would be allowed inside the courtroom. All spectators were allowed to take a notepad and a writing implement, so I grabbed the little notepad and a pen from my bag before checking my belongings.
(I did, however, check-in and post to Facebook as we were walking up the stairs a few minutes before I left my phone in the locker.)
There was one final check before going into the courtroom. Security hand-searched all purses. I had left my "Stop the Torture! Occupy JRC" button from the National Day of Action on June 2 pinned to my purse, and the security officer told me I couldn't have that. I had forgotten about the button, and I asked whether I could put it inside the purse. She insisted that I couldn't have it, and while I was asking whether I could leave it on the table and return for it, she disposed of it. (I did get a replacement within two days from the wonderfully talented and dedicated Emily Titon.)
I was waved through and I waited at the arched entryway to the chambers. Another security officer chastised me for standing too close to the entryway and asked me to take a few steps back. I waited for less than two minutes before I was retrieved and escorted inside, ushered to a seat at the very back of the courtroom beside one of the looming columns. Once left there, I reached with my hand and ran my palm for a few minutes along the cool marble. Directly in front of me, I could see the red curtains where the justices would enter. The one to the far-right (audience's perspective) was askew. I resisted the temptation to leap over the bar and adjust it.
It was probably about 9:30 or a little afterward, and the justices were scheduled to open court at ten. There were well over one hundred people inside, possibly around two hundred, packed neatly in benches and in chairs that had probably been taken inside the courtroom for the specific purpose of accommodating the large number of spectators. Hushed conversations gradually grew in volume until a security officer would shush everyone, repeating the process. One of the security officers behind me remarked to another that they were going to try to cram another fifty people into the courtroom. I discovered that the young woman to my left was also a Georgetown student--Hoya Saxa!
A minute or two later, two other people and I were motioned by one of the officers and ushered closer to the front. I was seated now in a chair beside one of the benches, maybe six or eight rows away from the bar, but definitely much closer than I had been before. I shared a brief conversation with the man next to me, who was a law student.
Then, there was a jarring, high-pitched buzz, the justices were announced, and the entire room immediately fell silent as we stood. When we were seated again, I could see all nine of them in their black robes at the front, and the Marshal began to call, "Hear ye, hear ye, all persons having business before the Honorable, the Supreme Court of the United States are admonished to draw near and give their attention for the Court is now sitting. God save the United States and this honorable Court."
Thus launched one of the most bizarre experiences of my entire life. Partway through Chief Justice Roberts's introduction of all three cases for which the Supreme Court would issue rulings, I decided that I better start paying attention, so I flipped to a blank page of my pad and began to draw.
The first case was United States v. Alvarez, in the Supreme Court considered the constitutionality of the Stolen Valor Act, which criminalizes the fraudulent claim of receiving military decorations or honors. Assuming I understood correctly what I was hearing, the Supreme Court struck the Stolen Valor Act as unconstitutional, with Chief Justice Roberts citing the widespread outcry over the original defendant's lies as proof that such fraudulent claims do not tarnish the value or respect given to military decorations. I did not understand the context of the second case's ruling.
The Affordable Care Act, probably what everyone or nearly everyone inside wanted to hear about, was the third and final case in the Supreme Court's last session for another few months. Chief Justice Roberts went first, followed by two dissents, one read by Justice Kennedy and one read by Justice Ginsberg. (Michelle Bachmann, who had been inside, rather rudely stood and abruptly left in the middle of Justice Ginsberg's dissent, in order to give a rallying speech outside to the Tea Party folks.)
Once we were dismissed, I meandered back to the room to fetch my belongings, and headed outside. I managed to snap a quick picture of the inside of the main entryway of the building with my phone before being yelled at for taking a picture. Outside, there were people everywhere, some celebrating and others vehemently protesting. I was struck again by the heat. It took close to a half hour to locate Emily Titon -- Shain Neumeier, who was there, was unable to find us, and agreed to meet at the Metro station for the APSE Conference to grab lunch before returning to the conference -- and in the meantime, two Georgetown students also interning over the summer caught my attention and waved.
A journalist with a Vietnamese group overhead me mentioning that I'd been inside and asked me a few questions on film, remarking afterward that I sounded "very knowledgeable." (I pretty much parroted what the justices had said.) I was standing directly behind two protesters, one dressed in teal doctor's scrubs and an Obama mask, and the other dressed in an all black Grim Reaper robe with a metallic mask and (hopefully fake) scythe, on the stairs while looking for Emily. I was beginning to experience symptoms of oncoming heat exhaustion again.
All the while, I was about to fall over in shock. When I'd looked at my phone after retrieving it, I had been flooded with Facebook notifications. Even my dad emailed me a news article published halfway through the ruling asking if I knew about it. (I said audibly, "Yes, Dad, I know. I was just there.") One Facebook comment bemoaned the false news report that the bill had been entirely stricken, followed several minutes later by the same individual noting the error in reporting with relief. And when I made it back to the office on Friday following the APSE conference, I was asked to write this for the NCWD/Youth blog, also published today.
And that, friends, is how I managed to not die of heat stroke and witnessed history, all in one day.
I give up trying to align the below images and text. The HTML code won't work, and I can't move things around on the computer screen in the compose mode, and urgh. Hover over the images for the correct "alt" text. Or guess based on the descriptions which go with which. I GIVE UP. BLOGGER IS SUCH AN INACCESSIBLE PLATFORM.
The first of the three drawings/notes in my notepad. The image is of five people. From left to right: A woman in profile faced to the viewer's left, with bangs and dark hair; a man wearing a suit, collared shirt, and tie, smiling without teeth; a man with a neatly trimmed, short beard and mustache, appearing serious; a man with a few inches long beard and mustache, a receding hairline, and a polo shirt; and a woman wearing a Muslim hijab headscarf. There are illegible notes below that.
The second of the three drawings/notes in my notepad. The image is of two people. On the left, a man with a long beard and no mustache, curly hair and beard, round glasses, wearing a short-sleeved shirt, and who has hairy arms. He appears to be smiling. On the right, a woman with long, straight hair, and evenly cut bangs, dressed in a tunic-style top, who also appears to be smiling. Beside and below that are illegible notes.
The interior of the main entryway to the building. Appears majestic, with raised ceiling and various people below.
The third of the three drawings/notes in my notepad. The image is of two people. On the left, a woman with shoulder length, wavy-ish hair, wearing a styled suit-jacket and collared blouse and a pendant. On the right, a man with carefully combed light-colored hair, square glasses, wearing a v-neck sweater vest, a collared shirt, and a tie. Above that are the words "'invalid' really??"
17 July 2012
By the way, this is meant to be humorous, if mostly true, and statements that appear to be blanket descriptions of people or groups should NOT be taken as blanket generalizations, but as descriptions of my personal experiences with people from those groups.
1. When in D.C., don’t take the Red Line Metro (Subway). It tends to catch itself on fire.
2. Crash conferences for good food—or at least for good appetizers. Prepare a story first, though. Maybe you “lost” your name badge.
3. Ask bus drivers if you’re not sure how to get somewhere—they’re really helpful!
4. Talk to college-age people—they’re probably students, interns, or both, and you can learn a LOT from them.
5. Go to Massachusetts Avenue to see a crudton of embassies, churches, synagogues, temples, and mosques—some are BEAUTIFUL.
6. Visit your congressmen—their staff love to see constituents and you’ll get a ticket to sit in on an actual session of Congress!
7. SAVE your sticker-ticker from #6. You can reuse it.
8. There are several colleges in D.C.—Georgetown, George Washington, Howard, University of the District of Columbia, Gallaudet, and Corcoran—visit them all for kicks and giggles!
9. There’s a zoo here—Woodley Park Metro. If you’re terrified of the Red Line after #1, take a bus.
10. Use the Circulator buses. $1 fare!
11. The International Spy Museum’s board includes a bunch of former CIA folks.
12. D.C. has a Developmental Disabilities Awareness Month Celebration—I went and got to see D.C. Mayor Vincent Gray.
13. Mayor Gray is currently under investigation for corruption and is totally going down.
14. My office has a sign with instructions for surviving chemical, biological, and nuclear attacks. I’m scared.
15. Hotels charge for internet.
16. The police are racist.
17. Elevators break a lot.
18. Georgetown is an ADA violation.
19. Water costs $3.
20. The rude people are usually white people who work for the government.
21. The nice people are usually students, interns, religious people, tourists, foreigners, or not white people.
22. Cars in D.C. do not stop. Ever. Cross at own risk of death.
23. The people who use the Bike Share almost never wear helmets.
24. Cherry trees are evil.
25. The Secret Service are scary.
26. Lots of people wear lapel buttons with their agency or department seal.
27. Every government building, ever, was specifically designed to make sure that you personally will get lost after going in.
28. Georgetown neighborhood is all rich white people who have nannies, dog-walkers, and special private schools for their scions.
29. Go to Adams Morgan for S. American food.
30. Go to U Street for Ethiopian food.
31. Do NOT eat at a restaurant in Georgetown. They will ROB you.
32. Don’t come here in the summer.
33. I have no friends. Come here this summer.
34. Every dog is for petting.
35. Churches are for air conditioning.
36. D.C. = mosquito heaven.
37. Diplomat license plate = “don’t give a flying crap about traffic or parking laws” attitude from foreigners
38. All the lobbyists have offices in Farragut—so do all the charities. Coincidence?
39. John Kerry lives in Georgetown.
40. Disabled homeless people are faking their disabilities 50% of the time.
41. There are almost no Dunkin Donuts here.
42. It does snow.
43. Lightning storms mean near-constant lightning and power outages.
44. The power companies only care about the powerful people. They couldn’t care less about everyone else and will make them wait days before turning their power back on.
45. The food trucks are ‘spensive! Even New York is cheaper! Only the Fojol trucks are worth it—Merlindia, Benethiopia, and Volathai. Ask for $4 or $6 worth of food. They’re nice.
46. Everyone is more important than you. Get over it now.
47. You need a government or college ID to go into a college library.
48. Everyone is a lawyer.
49. No one actually cares about justice. It’s all a bunch of hollow talk.
50. Being here longer than three months will make anyone a cynic and a pessimist.
51. No one knows you exist. Deal with it.
52. Everyone will notice if you doze off during meetings. Everyone.
53. No one reads your Twitter except your friends from home.
54. No one cares about what you post on Facebook.
55. There are too many lawyers in D.C.
56. Many of them aren’t practicing.
57. Observe where all the tourists eat. Don’t eat there; it’ll be highway robbery.
58. WMATA employees fall into two categories: complete jerks and day-ruiners, and really nice day-makers. There is no in-between.
59. Dupont Metro Station has a habit of being on fire or being flooded.
60. Dupont Circle has the most affordable food.
61. Groceries are expensive.
62. Parking is expensive.
63. Rent is expensive.
64. Everyone is either near-broke or filthy rich. There is no in-between.
65. Meetings are for reassuring everyone else how important they, their employer, and their projects are.
66. When people more important than you (#46) are talking, shut up and take notes.
67. When you are talking, slyly check if the other person is taking notes.
68. Have business cards. Use them instead of “Hello, how are you?” Preferably, have a fancy-sounding title on yours.
69. DO NOT RUN OUT OF BUSINESS CARDS.
70. For interesting conversations with creepy strangers, talk about God and Death and “the spiritual journey.”
71. Buy Street Sense.
72. Talk to people in elevators, at Metro stations, and at bus stops.
73. Lunch is always better when someone else pays for it.
74. Pretend to be a college student. Get discounts on stuff.
75. Security cameras are EVERYWHERE.
76. Churches are EVERYWHERE.
77. D.C. has the country’s oldest mosque in it.
78. Beware of squirrels! They will attack your food!
79. Never buy anything from an on-campus bookstore. They will rip you off.
80. Listen to the street musicians.
81. Don’t listen to the lawyers. They went to school to learn how to BS and now they get paid to do it.
82. Anyone who says they work for the CIA is either lying because they’re attention-fishers or has a really boring job that they still can’t tell you anything about but still want to sound cool.
83. Printing stuff costs money.
84. So do long-distance calls.
85. When you have no friends, you tend to either go over your monthly minutes or depressingly hardly use any.
86. Smoothies are for sad days. Treat yourself.
87. People who work for Congress are very self-important.
88. يستطيع كثير من الناس أن يفهموا هذا.
89. Si puedes entender esto, puedes hablar con todo de los empleados a la Universidad de Georgetown (o la mayoria de ellos).
90. It rains unpredictably here.
91. You are no longer unique or special. There are hundreds or even thousands of people with the same interests and goals as you.
92. No one cares what you think, and no one will for many decades.
93. By the time people care what you think, your opinions and idas will be stale and rather asinine.
94. Clothes are expensive.
95. There is a form for EVERYTHING. Congratulations, part of your brain just died.
96. There are three airports near here.
97. There are protests every day of something.
98. Interns or a staff person actually write the tweets and Facebook statuses of important people. Bubble burst.
99. No one here actually cares about social justice. It’s just something to look good on a resume for a future high-paying job. After all, if we wanted to solve problems, it’d be easy for the millions of so-called activists to actually commit to long-term redress of systemic problems and attitudinal barriers to progress, and we wouldn’t see the exact same things keep happening—but that’d be too easy, wouldn’t it…
100. I have too much free time on weekends.
101. No one does anything unless there’s something in it for them.
102. Sprinkles cupcakes are better than Georgetown Cupcakes.
11 July 2012
At least the above groups can defend themselves. Many of those with autism or “special ed kids” can’t. ”You look autistic?” What does that even mean? Did he watch Rainman once? Maybe he heard the word by accident and thought it would make a good insult? Anyone who has spent more than ten seconds with an autistic child (or has one, like me) knows that autistic kids can look just like everyone else. Using their condition as an epitaph is the lowest of the low. I expect that kind of crap from a child who doesn’t know any better.
There is some good content in here, but it's buried by some pretty awful statements, too. Yes, Autistic people don't tend to look like each other (although there are some studies that show similar proportions in facial features, the average layperson is highly unlikely to a.) know that or b.) apply that when seeing strangers), and beyond Autistic ways to speak and move, there isn't really an "Autistic look." Good for Mr. Rosario on that one. And yes, Autistic people can look just like anyone else. And yes, using Autistic as an insult is incredibly demeaning, about as hateful and hurtful as using Asian or woman as an insult.
But those good points are drowned out all too quickly for me by the rest of Mr. Rosario's statement.
Firstly, Autistic kids are not the only Autistic people in existence. Autistic kids become Autistic adults, and it's tiresome, redundant, and frustrating to continually hear talk of "Autistic children" and "Autistic kids" outside the specific context of children under 18. We're not talking about schools or early intervention, people. We're talking about using the word "Autistic" as an insult. Autistic children become Autistic adults. I am one.
Secondly, even if Mr. Rosario did intend to refer to all Autistic people with his comment, he would then be perpetuating the type of paternalism that sees all Autistic people as eternal children, forever childlike, innocent, naïve, incapable of becoming adults, rendered forever to infantilization--another form of de-legitimizing and silencing. Of course Autistic children are children. But Autistic youth and Autistic adults should never, ever be referred to as "Autistic kids" or "Autistic children."
Third, the paternalism and well-meaning condescension in Mr. Rosario's blatant and explicit presumption of incompetence is astounding. Autistic people, including Autistic children, are not defenseless. We are not helpless. We do not exist merely for the whim or caprice of whoever happens to be around us, with absolutely no means of expressing our feelings. Yes, most Autistic people have difficulties with expressive communication, receptive communication, or both, but that does not mean that we cannot defend ourselves. As well-meaning as Mr. Rosario may be in wanting to protect perceived-ly defenseless people from horrific and cruel comments, his statement serves only to further perpetuate the fallacious idea that Autistic people are incapable of speaking up for themselves. Even among Autistic people who lack functional expressive communication skills or expressive speech, there is a plethora of Autistic people with the most significant disabilities who have learned--sometimes very late into adulthood--to communicate. Mr. Rosario's comment erased these people from the picture. It also erased the very, very many Autistic people who do have any form of functional expressive communication or speech.
Fourth, Mr. Rosario demonstrates his lack of familiarity with the Autistic adult community with his comment that only "a child who doesn't know any better" would make such a hurtful comment trying to use the word "Autistic" as an insult. As I and many of my Autistic and ally friends and acquaintances know very well, "that kind of crap" comes all too frequently from adults, including adults who you'd think would know better--the kind of service providers who look derisively at their Autistic clients and consumers as passive and incapable of making decisions for themselves, the kind of educators who think of their Autistic students as walking behavior problems better referred to juvenile justice, the kind of professionals and researchers who think of their Autistic clients as a walking list of deficits, and the kind of non-Autistic parents of Autistic children who de-legitimize Autistic adults by saying that because we are Autistic, our opinions must be black-and-white and incapable of acknowledging the validity of others' ideas.
For this one, I don't blame Mr. Rosario. Most well-meaning outsiders might come to a similar conclusion--at least until they enter the vicious world of Autismland and witness firsthand the never-ending onslaught of de-legitimization and silencing that we Autistics struggle to survive every day. Yet it's not enough to merely witness it. One must come to understand how the tactics of silencing and de-legitimization do real harm to the Autistic community and ultimately pose a real danger to all of us, especially when it happens in the guise of supporting or helping us. Paternalism must be recognized, must be called out, wherever and whenever it happens. In the absence of this, it will continue to perpetuate itself and fester even among those who genuinely want to support the Autistic community--and that is a dangerous idea indeed.
10 July 2012
03 July 2012
1.) Adopt a community-based participatory research model for all grant review. Specifically, at least 55% of all scientific advisory boards and grant review panels must be comprised of Autistic people (who can sometimes also be parents, professionals, or researchers), while the remaining members may be non-Autistic family members, professionals, and researchers. Furthermore, these boards and panels must have actual decision-making power.
2.) Autistic people must be meaningfully represented and included throughout the organization's leadership. Specifically, the national Board, all local or regional Board, and all advisory councils must meaningfully include Autistic people as at least one-third of the members or appointees at a basic minimum, with the targeted number at 55% representation. Those members must have equal decision-making power as non-Autistic members. Furthermore, Autism Speaks must hire competent and qualified Autistic people at all levels of the organization, from entry-level positions to the top ranking executive positions, without regard to communications differences, and these people must not be tokens, but must have legitimate decision-making power. Additionally, Autism Speaks may choose to create a supplementary advisory committee comprised entirely of Autistic people, provided that that body has meaningful decision-making power.
3.) Research priorities must shift toward the needs and desires of Autistic people. Specifically, funds set aside for research must be allocated toward research on topics such as integrated and inclusive education, integrated and supported employment, supported and independent living, access to healthcare, sensory integration issues and therapies or coping mechanisms, augmentative and alternative communication, discrimination in employment and housing, postsecondary and workforce preparation and outcomes, person-centered and individual-directed transition planning, and abuse of Autistic people by caretakers and service providers. Furthermore, research that focuses on identifying the etiology or specific genetic causation of autism, environmental "risk" factors, development of a prenatal screening, or recovery or cure should not be pursued as this is not research that will benefit the millions of Autistic people alive now, many of whom do not want to be cured, including many Autistics with very significant disabilities. Research that focuses on improving quality of life and removing barriers to access should become the only priority.
4.) Materials produced by the organization must only provide accurate, positive, and objective information. Specifically, any fundraising campaigns, public service announcements, informational sheets, or other materials must focus on acceptance and understanding of Autistic people instead of framing our lives as tragedy or pity narratives. Materials must move away from exclusively deficit-based language, fear-mongering statistical comparisons or analogies, or otherwise dehumanizing or othering language. Additionally, Autistic people must be consulted and meaningfully included throughout the development of any fundraising, promotional, or informational materials. Furthermore, Autism Speaks must apologize for previous dehumanizing and offensive language in organization-sponsored public materials, including the rhetoric used in "Autism Every Day," "I Am Autism," and the constant comparisons of the likelihood of being Autistic to the likelihood of a child dying in a car crash, being struck by lightning, or having cancer, diabetes, or AIDS. Additionally, Autism Speaks must repudiate all remarks that appear to lend credence to the debunked vaccine-causation myth.
5.) Advocacy priorities must shift to those accepted and pursued by mainstream disability, disability rights, and self-advocacy organizations. Specifically, advocacy must focus on establishing policies and practices at both the national and local levels that promote equal access and opportunity for Autistic people in education, employment, housing, healthcare, and civic and community life, which is often achieved by varying levels of supports and services appropriate to each individual. Regardless of whether Autism Speaks takes a more "activist" role in this sense, funding allocated toward advocacy must be reviewed and approved by Autistic people. Furthermore, Autism Speaks ought to be supporting measures to end segregated eucation, restraint and seclusion, aversive punishments, inequity or inaccessibility in healthcare, sheltered workshops, or institutionalization.
6.) Autism Speaks must undertake an effort to reform its finances and budget. Specifically, executives and employees must be paid fair wages commiserate with their qualifications and duties, and with consideration that the organization is a non-profit, not a private corporation. As few funds as possible should be allocated toward fundraising, as the majority of funds ought to directly support and benefit Autistic people.
7.) The organization must partner and collaborate with national and local cross-disability and disability organizations in order to promote research, programming, and advocacy that align with the priorities of Autistic people, as expressed by such established organizations as TASH, the Autistic Self Advocacy Network, and the Autism National Committee. Furthermore, the organization must make all effort to educate its employees, members, and volunteers as to both the changed priorities and practices, and the reasoning behind them.
Until all of these things happen, I will never be able to withdraw my indictment of the organization. I am willing to talk to whomever will listen, but I will not forget the repeat offenses that Autism Speaks has accumulated. Autism Speaks has the opportunity to make a sea change in its philosophies, policies, and practices, but a partial reformation will be no reformation.