I know I shouldn’t be doing an “update” post, but I’ve had to delay a lot of the posts I’ve been planning. In the mean time links and things, as well as some plans on what to look for, are ready and I’m pretty excited about them! First I’ll talk about some of the plans I have for the next few weeks, then the things I’ve done recently around the net, and finally some of the things I’m excited about that aren’t mine. Ready? Fantastic! Allons-y and Geronimo!
Look for a post about the Allied Media Conference, as well as on how access to various types of media has helped improve my life here on monday or so. I’m co-coordinating the Disability practice space- creating collective access- this year, and I’m really excited about it. (If you want to blog/write/make videos/make art about how media has improved your access, let me know!)
I’m also working on a post about the issue of ableism and classism combining in the practice of telling low income families to call the police when their kid has a meltdown instead of services. I’ll talk about an IEP meeting I had, and I’l talk about how the added factor of racism resulted in the unnecessary death of Stephon Watts.
Elsewhere on the web. . .
If you haven’t yet, please go check out the Disability Right Now blog. I’m a staff writer as well as the PR head. We are wrapping up a blog event about George Hodgins, Euthanasia, and Eugenics this week. Next week, I have a post on Disability History 101: the origin of institutions going up for my post for round 1. Also, I worked with the EiC to do an interview about it for ASAN which will be in their April newsletter! Whoo!
Not Quite Web Stuff:
This week I’ll be going to Chicago to co-facilitate for the Illinois state team at an Allies in Self Advocacy Summit. It’s exciting, of course, though at this point I will basically be at the hotel and the airport.
I’m going to be going to a couple of Rallies in Harrisburg, PA this spring. The first one is on Women’s Rights, and Amy Caraballo is one of the organizers. It’s April 28th, and it’s complicated- but I think it will be important to be a PwD at this event.
The Other is May 2nd about the cuts to services for PwD that our current administration here in PA have been pushing. The PA Waiting List Campaign is heavily involved, as is Vision for Equality. I hope to see lots of people there! I’m going under the auspices of SAU1, but I’d love to see some ASAN representation or even NYLN representation!
It’s pretty scary stuff. So far: Disability Rights Network of PA and a whole slew of disability orgs here in PA have filed a suit against the Corbett Administration; Issues with Access to areas of the Capitol for PwD; and some fairly rude treatment of Protesters. (Rendell’s administration regularly sent someone to meet with Protesters with disabilities. Corbett’s ignores us or tries to create barriers to our exercising free speech.)
I personally feel sick over our current governor here in PA’s tenure. But then, I didn’t vote for him. I voted for the other guy. If you are in PA (or anywhere in the USA actually) please register to vote and read up on the issues. Help other people who might have barriers to getting in to vote- especially PwD- get registered and in to the voting booth or registered early enough for absentee ballot or alternative ballot. Last year I almost couldn’t vote because my absentee ballot came late- thankfully the plans that would have taken me out of town were cancelled.
Too often, PwD don’t vote because of a lack of support or people ignoring that we might want to. In the current political climate, it’s especially important that our voices are heard and votes count. You can find out more about getting out the disabled vote from the Disability Voting Coalition of PA.
Other People’s stuff:
Babble.com is doing a Top 30 Autism Blog ranking, and the voting is now! A number of my friends are on the list and are blogs I’d recommend reading. (Along side some I’d have you avoid, but that’s your business.) Good Luck to Lydia, Julia, E, Stimey, “Autismum“, and Thinking Person’s Guide to Autism!
I have noticed something a little disturbing. Well, perhaps not terribly unusual- may actually be a standard in the world of publicists for all I know- but still disconcerting. What is this? The copying of another person’s article or release as framing for your own work.
I’m not talking necessarily plagiarism- oftentimes, the original writer is cited someplace, in a terribly unobtrusive way. Sometimes, the story was paid for from a news service. Certainly not Plagiarism. And in the general population, it would be nothing.
But what I’m talking about isn’t just in the general public, general sphere. It’s used by the people who are supposed to be our defenders- without checking that the article or release’s approach is appropriate. It’s one thing to link to an article that has appeared elsewhere. I’ve done it, even when the article in question irritated me. But to run it under your letterhead, or to purchase it for distribution, is something else entirely.
Let me use an example that came through my inbox today:
I got a forward that was originally distributed by the people Organizing the Reinventing Quality Conference in Baltimore, Md this week. I was a bit upset by the approach that the article in the email used, so I started to check them out. From their website, they looked interesting. Lots of talking up about bringing in community living, self advocates, etc. (I’d love to hear from anyone who is better familiar with them and their reputation among self advocates; email@example.com)
But talking up isn’t unusual even in organizations that aren’t so supportive. It is a tough lesson to learn- one that might make an advocate, particularly one that has ASD related issues, bitter. But many organizations assume token language usage, alongside the more obvious issue of token representation. Not being sure what to think, I plugged the Lede into google.
I discovered a couple of things. It turned out to have been originally written for the Raleigh News & Observer. As a general news source, the treatment in the article was typical, though frustrating. And it isn’t unheard of for companies the size of their owner, McClatchy, to sell distribution rights (McClatchy-Tribune). All perfectly normal in the industry.
What bothers me is how many groups- and the sort of groups- have reprinted the article as is. Some do so in a way that clearly shows- albeit at the end of the article- that it was retrieved from a distributor, like Behavioral Health Central. NAMI- for all the issues I have with them- doesn’t even host the full article, and instead links the reader to the News-Observer’s site to read the full article. All of these have various levels of appropriateness in distributing this article. As much as it personally pains me, NAMI’s approach was the most appropriate.
But back to the email I received. This is how it started (where a byline might be):
And here’s the bottom (where the full information is given on Behavioral Health Central):
Someone who is familiar with journalism or publicity might think to google the lede. But my guess is that the majority of readers won’t- maybe their background is in social work, or maybe they are parents. I know the org that forwarded this to me has a primary family base. To these “average” people, the language would appear to be authorized by the distributing organization.
My opinions on the article itself can be found in my last post. I disliked the perspective. But when a non-profit or other organization promotes an article- especially with such limited sourcing- counter to the interests of the population they claim to serve, there is an ethical problem.
Now, that was just one example- one that was specifically centered on a journalistic article that was distributed without proper sourcing.
But the problem is vaster than that. I have seen publicists copy over releases from government agencies to give context to the information their client is trying to get out. While giving context is an important step, that context needs to be in the language and perspective consistent with the organization you are representing. It is both lazy and unethical to refrain from copy editing the entirety of what you put out there to be consistent. And if a publicist were to submit something this way to a professor in college, they would most likely receive a reprimand.
I have a proposition. Why don’t we all take a moment to find some standards as to what we do and don’t put out there. Here are my suggestions:
1) When distributing an article, source clearly. Don’t cut out the original distributor. Use bylines in their customary place. I would even prefer that the sourcing be put in the by line. EX: “Michael Biesecker for the Raleigh News Observer.” But even putting the sourcing clearly at the end (EX: “Originally published in the Raleigh News Observer”) is at least consistent with Journalistic standards.
2) Use language consistent with the organizations/people we represent. While there does need to be a recognition of the language and views of the public, that doesn’t make it okay to use language inconsistent- or even opposed- to the organization or people. Instead, use it as a chance to promote their language and views, even if only subtly.
3) If creating context, don’t simply copy and paste someone else’s release for it. First of all, it’s lazy and bad work. Secondly, it limits your ability to promote who or what you you are supposed to. And occasionally, it might promote things that are *unwanted* instead.
Good News for the Autism community, and for the cross disability movement as a whole. Ari Ne’eman has been announced as one of President Obama’s latest Presidential Appointees. He is currently awaiting confirmation by the senate for a position on the National Council on Disability. You can read the press release on the White House website here, as well as the names and Bios of other Appointees.
I would like to let you know how pleased I am with President Obama’s recent Nomination of Ari Ne’eman to the National Council on Disability.
Mr. Ne’eman has worked tirelessly to make sure that the interests of individuals of all ages across the Autism Spectrum, be it Employment Issues for higher functioning Individuals, Access to AAC Devices for those who are non-verbal, or even in assuring that the lower functioning individuals on the Autism Spectrum are safe from care giver abuse and have access to community based services. His work promoting the causes of the Cross-disability community helps all disabled Americans fight prejudice and give back to their communities.
I am proud to have his voice as the one that is representing my needs as a Disabled American, and look forward to his confirmation, as well as all the work he will do on the NCD. I also look forward to his working along side you all to protect the interests of all Americans though these efforts.
I would like to encourage you all to write similar letters of support; Congress.org is a useful tool for this, but if you don’t want to register, you can look up your Senators and their contact info on this page of the Senate.gov site. If you want to thank the president, you can do so either through the above mentioned Congress.org or on the White House website, here.
A couple different things today.
1) On News-Dump day (Friday night is the time to dump news you don’t want carried too far; see this) The CDC revised their Autism statistics from the “1 in 150″ to “1 in 100 to 1 in 300 with an average of 1 in 150″ Americans. This reflects the wider use and acceptance of the diagnosis. (link, Note: the writer is very curebie.)
2) New Study suggests that Analytic thinking isn’t significantly impared in Autistics, compared to developmentally normal age-peers.
[I]n the new study, kids with autism discerned the overall context of visual scenes and relationships within those scenes, Morsanyi says.
“This finding is quite important and adds to the growing body of evidence that cognitive deficits in autism are not yet properly defined,” remarks psychologist Laurent Mottron of Hôpital Rivière-des-Prairies in Montreal.
Which was important to me because of how I learned to comprehend similes and metaphor- via Analogy.