AWN and Pepsi Refresh

I have been reluctant to post about this here because I like to maintain myself as an independent advocate on top of my work with various organizations. But after weighing my options, I’ve decided that this post does need to be made.

Autism Women’s Network (which I am the Director of Advocacy for) is currently in the running for a $50k grant through the Pepsi Refresh project. The Pepsi Refresh project gives out monthly grants based on community support to organizations and projects. (Official Page; Story on it.) You might have seen a version of this commercial on TV, featuring  Black Eyed Peas’ “One Tribe” Buy "One Tribe" on iTunesBuy "One Tribe" from Amazon :

AWN is pursuing this for a couple of reasons.

1) Project FAIM. FAIM stands for Female Autistic Insight Mentoring. The idea is to provide trainings and workshops in communities across America that focus on the issues- and possible supports- faced by women and girls with Autism Spectrum Disorders.

We plan on bringing in adult autistic women to share insight on these issues, as well as providing valuable role models for autistic women in attendance. But the core of the program isn’t bringing in names or faces- you can get that at your average conference, some at which the presenters are the only autistics in attendance. The idea is instead to use some of the stories to get an idea about some of the issues facing many autistic women, and to make these issues real to participants.

The real “meat” of the project is to bring the ideas, skills, and the framework for finding resources on a wide range of issues into our communities. We expect to reach a wide range of people, from autistics themselves to allies such as friends and system peers and service providers. By changing how our allies approach the issues, it is our hope that local communities can be more effectively supportive. Too often, a medical model is used when looking at supports, and rarely is a medical model effective for most of the issues people face. When we change the paradigm from a medical to an individualistic approach, we can see more success in all areas of life.

Some of the tentative topics we will be covering include peer supports, Entering adult life- and what that means for different people, Learning how to successfully communicate and negotiate some social expectations, and identifying vulnerabilities and some safe guards we can put in place to protect us. Other topics and issues are welcome to be included.

2) Establish AWN’s Non-Profit Status. Establishing federally recognized non-profit status is no easy matter. There are a LOT of steps involved, and lots of legal work involved in the establishment of any organization.

The basics are to: a) achieve incorporation in a state. Each state has their own standards of incorporation; since we will be establishing out of Nebraska, we will be following NE standards. b) Remain incorporated for a minimum of 3 years. This is a standard enforced by the IRS; any and all tax documents from this period are thoroughly reviewed by the IRS during the application process. c) The filing of extensive IRS forms. You can get an idea of these forms by checking out the IRS’s requirements, or their Step-by-Step guide.

This takes a lot of hard work, and can be difficult for someone without a legal background to accomplish. In addition to user fees, AWN would also need to enlist the help of someone with that sort of background in order to reach 501c3 status.

3) Continue Our Current Projects. Since we opened the AWN website in January, we’ve seen a very positive response. Right now, we have a forum that provides a place for peer support and information sharing, Articles on topics of interest to Autistic females and our allies, and an events calendar to let people know about meet-ups, workshops, and other events. We hope to implement further features including private blogs with user defined privacy features in order to keep our members safe and still able to communicate their situations and needs.

In addition to our website, we also have a radio show hosted on Blog Talk Radio, a facebook page, and youtube and twitter accounts. Some of our chapters have also hosted events, such as the Autism Night Out in the Philadelphia area earlier this year.

The Pepsi Refresh Project allows you to vote once per day for any one project, with a total of 10 votes a day to spread out throughout the various projects. There are 4 different sections on the site: $5k, $25k, $50k, and $250k. AWN is in the $50k section- so any votes in the other 3 sections won’t count against us. For the $250k section, only two projects will win each month, but the other three only require you reach the top 10 in the section to win.

Here are some projects in the other sections that might be of interest:

In closing, I ask that you please vote for AWN once a day if you feel so moved, and to check out some of the other promising projects in the running this month.

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Perils of (Buy?+) Copy+Paste

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; savannah@autismwomensnetwork.org)

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):

Image shows the email, with the logo of a non-profit, followed by edit dates, the title of the article, the lede (with Raleigh in caps at the start) and no byline in the normal position

And here’s the bottom (where the full information is given on Behavioral Health Central):

Bottom of the email, with the last line of the article, followed by a name, a phone number, than an edited date and links to two PDFs, followed by the email client's buttons for "reply", "reply all", and "forward"

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.

In response to a journalistic approach

I read an article today, and it is spurring me to write two blog entries. This one addresses the article itself; the other talks more about Non-profit use of articles and releases written by others and some ethical issues surrounding that.

The article in question was published in the Raleigh News Observer under the title “Study: Four killings reported in rest homes“.  The lede is “In the past two years, at least four residents of North Carolina rest homes have been killed by fellow patients who had histories of severe mental illness and violence.

In all honesty, it’s a pretty standard approach used in journalism to use a “bloody” headline and/or lede to grab attention. But is it the right thing to do, especially when talking about an already vulnerable population? Does it not contribute to some of the problems of stigma we face today, not only for those with Mental Health disabilities, but in the larger disability community?

Most of my comments here won’t make sense unless you’ve read the article. Go on, click it, I’ll wait.

First off, the placement of people in nursing homes is actually a misappropriation of the implications of  the Olmstead decision. For the vast majority, the nursing home is *not* the least restrictive environment, and for some it is further inappropriate. The language in the article doesn’t seem to recognize that the warehousing of patients in nursing homes is exactly counter the opinion put forward by the courts.

This study further worries me, because the way it is presented starts out with wording that is extremely negative about people with MH disabilities, and might lead those who do not read the entire thing to assume that taking people *out* of institutions was wrong. The public might not be familiar with what exactly Olmstead was, or even the breadth of human rights protections the ADA affords.

Towards the end it makes comments on the horrible conditions. If you *do* know your history, you can recognize as rather identical to the sort of institutional care that we have been trying to get people out of, but few people know their institutional history.  It does not adequately suggest what the appropriate measures would be. It does not call for change, but instead allows the imagery to “fester” in the reader’s mind, where someone with less of a background in the issue might come up with some very frightening “solutions” indeed.

This perspective is very much one that favors the provider, as well as the social worker voice, over that of the consumer (remember, nursing home placement is generally speaking 18+), especially with the emphasis on homelessness as the only visible alternative (rather than showing examples of the underfunded and harder to get a spot in alternatives) and this treatment leaves me worried. While yes, it is true that many would currently end up in the streets, very little mention is given to the sorts of programs that are *supposed* to be the alternative, but are under funded.

How are we supposed to rise support for something to be appropriately funded if the information we give out doesn’t explain what exactly that *means*?

There’s another question here, too, when it comes to the professional view bias. It’s one that has been repeated over and over in the history of institutional placements of all sorts. Owners and superintendents have manipulated the public perception of various populations in order to increase their standing, power, and funding in the public. Just as a politician manages public perception of himself, professionals manage their and their clientèle’s perception. And so half-truths and misleading information about populations in institutions abounded.

While today, the Eugenics hot topic focuses on pre-natal testing, in the early 20th century the argument was focused on Sterilization. The idea was that those with developmental or intellectual disabilities were either too fertile, or unable to protect themselves from unwanted advances. With the rise of the concept of Social Darwinism in the late 1800’s, it became more and more worrisome that there was a possibility of so called “degenerates” reproducing.

At first, some superintendants supported the idea of sterilization privately. There was an initial reluctance to publicize this, though, for fear that they would lose funding for patients that, once un-sexed, might be returned to the community. Over time both the concept of the disabled as a public menace and issues of over-population in institutions grew. Eventually, in the face of a lack of space for larger and larger intakes, they shifted their public support to sterilization. Privately, their letters show that as they gained more public support for the procedure they grew doubtful about the actual usefulness outside of institutional control. *

Back to the lede and title.

The fact that it leads with “four killings” caused by “other patients” with no mention of the deplorable conditions until later on is extremely troublesome. It uses, instead of the entirety of the problem, something that PLAYS SPECIFICALLY on stigma the public holds towards people with MH disabilities. In fact, there is very little relevance to the subject of the article in the lede. Deplorable conditions should be “bloody”  enough to grab headlines, and that is the real focus of the article.

Even if you are a parent rather than an individual with MH disabilities, there needs to be a recognition that leading with this sort of stigma will *not* help in the long run. Instead, it will just perpetuate the stigma so that when someone who is a minor right now reaches age of majority, the stigma will still be as virulent as ever.

In my eyes, to ignore all of this in writing an article on this topic is negligent- not as a journalist, but as a human being.

*For more information about the history of the treatment of the Developmentally Disabled, I would recommend Trent’s “Inventing the Feeble Mind

Transgression and Inclusion

I was just at NYLN‘s Reap What You Sow Institute last weekend. It was amazing- I’d like to talk about that more at some other point. What I’d like to bring up instead is the Sins Invalid performance.

Sins Invalid is a performance group focusing on disability and sexuality, with a centering on People of color and queer artists. We had Leroy, Maria, and Antoine live- One of Antoine’s performances is available on Youtube, if you care to watch.  As for samples of Maria and Leroy’s works, Maria’s My Vagina Manifesto and Leroy’s Man to Man Talk.

The performance last saturday was amazing. But more than that, it was thought provoking- in a way transgressive as much effective art is. I was very moved, and did end up typing something up (couldn’t express and speak at the same time) and showing Maria and Leroy at different points later in the evening. It was in essence this:

Society does not make a space to see us, and no one has told us to make a parting in that fabric to emerge alive and proud in our community. I am made sad by the thought- the thought that so much beauty is denied because there has been no one to say “Come Come come forward and up. We are all community.” That inclusion and acceptance is so *transgressive*.

I think that to think- really think- about this is something challenging, but also transformative. Then, I think that that is kinda the point of transgressive art- to provoke a transformation of thought that might nto otherwise happen, or at least won’t happen so soon.

So think: What is it that makes inclusion and acceptance so transgressive? What is it that offends so much that we are made invisible, unseen in our local communities? Why?

And How can we make a transformation in our world- to create an artistic venture, if you will- that takes us from a transgression to fact?