Nothing About Us Without Us! - working on inclusion at the ISST-D
By the Crisses
The ISST-D (International Society for the Study of Trauma & Dissociation) is a professional association that disseminates information and education on treating people with PTSD, C-PTSD, DID, and other related trauma and dissociative disorders.
They also basically hold a place of respect and authority in the treatment world by way of having published several iterations of treatment guidelines for adults and children/adolescents with DID.
When McLean Hospital staff presented at Healing Together (February, 2019), they mentioned the Harvard study that found that 90% of therapists were woefully under-educated in DID. The presenters from McLean lamented that clients ? patients, people with DID ? were stuck with the job of educating their therapists instead of actually moving on in therapy. The presenters from McLean were asked where a client should send their therapist for better education. The answer was the ISST-D treatment guidelines.
Before the conference, we were already working with a team of plurals discussing and marking up the 2011 adult treatment guidelines with commentary and corrections from the plural community. (link is direct to the group commentary on Google Docs, still open for comments) Pointing out biased statements, opinions in the document, asking for backing research. Changing every instance of the disempowering word "patient" for the more empowering term "client", and other similar changes.
After a couple months of looking at this document, discussing with peers and peer professionals (some members of the ISST-D), it became clear it needed much more work than the corrections we were making. The newest reference in the document is 2009, so it's at least 10 years out of date. And there has been a great deal of research and progress made since then. So with the blessing of many of our peers, we sought out the ISST-D to urge them to create a new set of treatment guidelines, and requested that they consider either having plurals on the team, or allowing plurals to have a review/comment period so we could examine the new guidelines for bias or stigmatizing material, etc.
We will post our end of the correspondences, and we will link to the letter the board of the ISST-D sent to us. We have to say we're disappointed, and if you will find these things triggering, perhaps it's best to just leave it at the upshot:
They will create new guidelines (likely from scratch), it will likely take 2 years (or more, not sure when they?re starting), and there may or may not be plural professionals or professionals with lived (trauma) experience on the task force that rewrites the guidelines (they did not say they would ensure this, just that it might happen ? as if by accident rather than design). Basically, they will not ask plurals without degrees and licenses for any input and won't seek out plurals with degrees and licenses for input either. Which potentially puts plurals and the ISST-D in the same basic position as people with autism and Autism Speaks.
That's the upshot, so if the details or specific wordings below will anger, frustrate or trigger you, please be warned. Rage quit at any time.
More to come. The text below is in progress as we pull together the links and documentation needed to let the community know what's going on. We're doing this with fair use, and for educational purposes for the community that this impacts, since we reached out on behalf of the community.
Our goals on behalf of the DID and Plural community were: reducing diagnosis time, reducing treatment time, reducing professional biases, and abolishing therapy abuse.
After the Plural Positivity World Conference we took a chance and reached out to the ISSTD to speak to their board president, Christine Forner (April 10, 2019). We called the ISST-D and were told to write an email. This is what we wrote & sent:
We are the Crisses, a coordinator of the Plural Positivity World Conference that took place March 30 to April 1st mainly on YouTube in response to and a gentle positive protest of the ISST-D's annual conference being inaccessible to members of our community. (https://youtube.com/pluralevents) We are also the owner administrator and major author of the resources at https://kinhost.org — a 20+ year old website for multiples, plurals, folk with DID and related issues.
While unrelated to these activities, we're also chair of the board of Independent Living, Inc. in Newburgh NY. They're aware of our global activism around plural issues, although this is not an activity we are doing while wearing that hat. It's just to say we're quite aware of issues surrounding non-profits and advocacy, education, activism, etc. and we're active in civil rights and disability rights on the local, regional, state, and national level as well.
We would like to make an appointment to speak with Christine Forner about concerns with the industry as a whole, how plurals (umbrella term which includes people with DID and OSDD) are treated in professional meetings, in the treatment guidelines, and how we are excluded from decisions the industry makes about us.
This is intended to be a friendly call. We want to work with you. We feel we have a lot to offer your organization and vice-versa.
Since we are all busy people, we prefer to make an appointment in advance, this way we can also make sure we're prepared and organized and do not waste anyone's time.
Intro to our collective's agenda as a plural entity — this may or may not represent all plural activists' ideas of what is most important when dealing with the ISST-D, but this is why we're getting in touch with you directly:
The amount of ignorance about dissociative disorders in the industry overall is appalling. The best-in-show for a "quick-start guide" to treating DID/OSDD is the ISST-D's treatment guidelines. The plural community has been working on revising the treatment guidelines to come up with recommendations for releasing a more positive, un-biased, de-stigmatizing version that is more forward-facing, and reflects current preferred treatment goals and options, and is much more friendly for professionals who do not speak English as a first language. This is the next major community project after our counter-conference has finally wrapped up and while we're working on correcting the closed captioning for the remaining videos.
We are also very concerned that professionals with lived experience basically are shunned by the industry, forced into hiding, and if they come out of the closet they risk losing their professional prospects for the future. How can an industry say they have our best interests at heart on the one hand, but shun and exclude us as peers on the other? That is not treating us as equals or with respect. This may require a shift in culture as more professionals begin to come out of the closet in your organization, but intolerance and hypocrisy is unacceptable. Plural professionals must be welcomed as equals at the table, and allowed to share their expertise in their dual role with lived and professional experience. They are the bridge to better treatment options and a voice for our community.
Oour last big goal is to discuss how to be included in the decisions that such a prestigious organization makes about our community and about those who are in crisis when most professionals have no personal experience with what they're regulating and making decisions about. As experts in our experiences, we have an enormous body of knowledge about what works and does not. Because we're not at the table — or those who are need to hide this fact and are not allowed to share their first-hand experience per the last point — this information is excluded from research, papers, decisions, etc. Our n= surpasses any study or professional's anecdotal opinions based on a few clients, which is unfortunately the backbone of much of the treatment guidelines and exposed in the surveys and papers by the industry. The basic assumptions underlying treatment models are not always even tested, much less backed by evidence. That's highly concerning for those of us who walk into a professional's office and have to introduce them to materials on how to help us (which is back to the treatment guidelines point, and the 90% of therapists who have no knowledge of dissociative disorders. The guidelines themselves are often not backed by experiment or longitudinal study, but by anecdotal evidence and specialist's opinions.).
Please forward our email to Christine and hopefully we can make an appointment to speak about these important issues.
Thank you for your time,
Rev. Criss Ittermann
We heard back from Christine Forner via email on April 15th, arranging a chance to speak. We chose to meet with them/her? on April 22nd, 2019.
We had a lovely conversation. Here's some highlights from our notes (anything personal about Christine Forner is omitted):
- the org was nearly destroyed in the 90s
- the mean age of the membership is/was 72 years old, Christine has been the head of a task force to recruit members for quite some time
- there's a 2 generation gap in membership
- all of her [older?] colleagues were traumatized by that era [omitting examples on purpose but let's say no SRA survivor would be surprised the ways in which the professionals were attacked and forced into silence]
- the ones left she feels are really dedicated to the trauma survivor community
- she wants to (also) organize to update the guidelines for childhood/adolescents
- wants to add somatic psychology, EMDR modifications, more biology/science to the guidelines, and proof/basis to refute false memory accusations
- she thinks that the group has been more open to wounded healers/traumatized professionals in the last 2-3 years
- she encouraged a position paper to the board, stating why we could be consulted, a group of highly educated and thoughtful activists who could at least consult on the guidelines, etc.
Our thank you note for the meeting (April 22, 2019):
Attached is the […] survey & results that we mentioned. — it's so insightful as a backdrop or behind-the-scenes glance at what the "mood" and best-in-show experts at the same time the guidelines were developed were actually doing in practice.
We will work on a letter, and we so appreciate your time. Time is everyone's one finite commodity! :)
Crisses / Criss Ittermann
And on May 2nd, 2019, we followed up again, with a letter in hand.
Thank you again for our talk a couple weeks ago.
I'm attaching a letter on our behalf as you suggested to introduce us to the board.
I'm also curious if you have any past annual reports or similar — trying to do my homework about the ISSTD and not finding much on your new website about the company in itself.
The "More Information" link for the Education and Research Fund Grants is missing. :)
I look forward to talking further. I have other ideas that might work for the ISST-D overall — more win/wins.
Buck on behalf of The Crisses
(Aside: they never sent any annual reports or similar background materials, and the win/win idea we were suggesting isn't worth wasting on them — we'll use it ourselves if we start a non-profit group.)
On May 11, 2019, having not heard back, we sent a quick note:
Have you received our letter for the board?
Has it been forwarded to the board yet? Wondering about a timeframe for a reasonable expectation of at least acknowledgement of receipt or an initial response.
Can also forward it straight to the ISST-D if that's preferable.
Christine replied the next day that Yes, she got the letter. It would be part of the June meeting. The task force would likely be set up by the end of the year. She also said, "Thank you for your letter, it is much appreciated, and worth a great deal of value for us." before signing off.
There are some community members chomping at the bit to write and send out a petition — in some countries (and most notably and ashamedly the Netherlands is on the list, in spite of so much DID research coming out of the Netherlands!!) the care for people with DID is exceedingly poor. While we all understand this process (writing new guidelines) takes time, there's actually people for whom this could be a matter of life & death — you are probably well aware of the 70% 1+ suicide attempt rate for people with DID.
So we all know it can't be rushed, but it's also very urgent to feel heard and to feel a sense of shared goals and desired outcomes. It may seem like "What's a year or two when the prognosis is 20 years of therapy?" — but there are times seconds pass like hours, minutes like days, and months can be a lifetime of agony.
I'm trying to work with people on the wording of this petition but I'm pretty sure I can't stop the petition. :) I've said let's give the board a chance to respond — 2 months feels like forever when you're fighting an uphill battle with health care, coverage, agencies who don't believe in DID, or who misinterpret the guidelines or can't even follow them because they can't read English, etc. So perhaps the best we can do (the Crisses) is guide their energy to be productive. Perhaps we'll have a petition to go along with the letter.
In 7 weeks we put together 20 presenters and 30 sessions. We can handle a spectacular petition in a few weeks. Hopefully it ends up giving weight to my words, and shows the urgent need for action.
Thank you, again, for your time.
So we waited, while others in the community still continued to get misdiagnosed, encounter horrible therapists, and so on.
On July 7th, can't remember whether it was before or after we emailed someone started a petition for the ISST-D to rewrite the guidelines the same day we emailed to check in on the board response:
I'm following up on whether or not the board has received the letter for the June meeting, and whether there's any type of response pending.
Thank you again for your time,
The major points:
- They explained who their organization is.
- They are a professional organization, thus even though the guidelines are about the survivor population only accredited individuals are capable of "fully participating" in the guideline-creation process.
- They then completely mistook that we wanted to help create or revise treatment guidelines for professionals to help survivors to mean that we were looking for resources to help ourselves directly, and referred us to An Infinite Mind for references or resources, acting as if we had never heard about them (even though we said in our letter to the board that we had just presented at the Healing Together/AIM conference).
- Then they acknowledge how poor the treatment guidelines are and that they need to be updated, and go on to say they are working on creating the task force, and that it will likely be a 2-year project because it's "tantamount to writing a textbook." (something we actually want them NOT to do because that's inaccessible)
- Then state that aside from sending my note to the task force, and they cannot guarantee any other involvement. But somehow they'll "continue to be conscious of your and other survivor's concerns" (their words) by osmosis or telepathy I suppose.
- then they say "no doubt" that "healed survivors" will be included on the project.
We have not yet written a response letter. We've been thinking long and hard about how to handle this situation and their response.
Comments? Criticisms? Critiques? — please give your feedback or opinions below.
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