Jigme Datse Yli-Rasku Archive (1) from Mar 18, 2016 @ 21:03

Hello,

I am writing this mostly to explain why I ended up creating this project.  This project came out of two separate things failing to work for me (largely for (I think) different reasons).

I do not really recall the timeline, so I will not try to go through what happened when in terms with the intermixing of the two things failing to work for me.

I was invited to participate in a group which was being created in Nelson called MindFreedom Nelson (MFN).  The timeline of MFN isn’t totally clear to me, especially the very early stuff.  I know that I was invited by a friend of mine, who I consider to be essentially the founder, though there also were a few other people who were involved very early on.

Initially the group was online, and we were able to get together for a variety of things.  It really felt like it had some pretty amazing potential.  This friend (who I’d like to refer to by name and will once I receive permission) was very much keeping things running well.  Never seemed to have any sense of “ownership” to the group at all.  We were meeting regularly, and our meetings actually were relatively well attended.

Then this friend (call them B), ended up getting busy with other stuff, and started to be less able to make our regular meetings and started to call on me to be “the person” to hold the space when they were unable to.  The meetings continued to be quite good for a while.

Then it became fairly clear that B would not be able to attend our regular meetings very often, so I took over holding that space.  For a while the meetings tended to be almost as well attended.  Essentially the only change was that B was not there very often.  Then other people started to attend less and less often.  Before too long, I ran into a situation where I could easily go 2 months with holding the space, and the only time a “meeting” happened was when I stayed in the front space of the association we were meeting in, and the topics we dealt with were actually discussed amongst the other staff, and clients just dropping in.

For a good while this didn’t bother me all that much.  Then a few things all fell together more or less at the same time.

I had been attending another meeting (which was very well attended, and was an easy walk (at least for me) of about 10 blocks more or less flat) just before this meeting.  I for the most part really enjoyed these meetings at the start.  Then a few people started to take more of an interest in me.  One person I simply felt weird about.  I don’t know why, and honestly I think that person I really never gave much of a chance and I think I would be keen on seeing what might have been the “oddness” that I was feeling there.

Another person started to tell me the kinds of things I may find helpful, and I started to look a bit into who she was presenting as “you would find helpful”.  I think I did manage to find one of the two authors she mentioned, though I am not sure I was willing to actually read what she (the author) was saying as I found the philosophy she seemed to be suggesting was simply not one I was that interested in adopting, thus not interested in investing that kind of money into.

The third person, she proved to be a very big problem.  She would talk about certain topics.  But if I talked about them, they were “off topic”.  She became an enforcer of what she felt the rules stated.  In the end, I simply felt that I could no longer attend that group as long as she was in this group, and playing this role.

Initially it really felt liberating to not participate in this “other group” as it meant that I could either time my trip as I had been previously, but have the time that the other group was using as time I could do other things with.

But relatively quickly I realized that I was making trips, and really felt that there wasn’t anything happening with these trips which wasn’t much easier to have happen just by staying in Rossland rather than travelling the approximately 2 hours (on a schedule) each way, and end up exhausting myself.

I continued going, despite the fact that almost none of the time the reason I was going ended up being “productive” (repeated meetings where you are the only person attending, can not really be considered productive), for a while.  Then I realized that a big part of why I had been resisting going once I “had no reason” was that the trip into, and out of town was triggering a trauma response.  Almost every single time I made it.

I started to honour the fact that I was not really enjoying the trips, and allowed myself to decide to not make the trip at any point along the way.  This ended up being insufficiently helpful in preventing the escalation of the trauma response as the last time I ended up attempting the trip, I turned around about 1/3 of the way through the trip, but more importantly ended up having multiple very intense traumatic events which happened in that trip, and included being retraumatized multiple times over the following month.

I did continue supporting MFN, doing what I could to be a “peer supporter” for a while.  But eventually as the majority of that was on Facebook, and it ended up being highly triggering (of a variety of things), I ended up dropping Facebook for a good while.  I didn’t intend on ever returning because it was messing me up that badly.

While I did end up returning to Facebook quite a while later, I did so because I really felt that there was a potential that being on Facebook could be a good way to promote my business (ie. hopefully end up getting some money coming in) or at least be able to help other people promote their business.

I checked out what I could do for MFN, but it feels like there was no role for me any more.  At least not in any kind of official capacity.  So, with my being not really at all officially attached to MFN, I felt that I needed to just go ahead and do my own thing along the same lines.  Which has become the Open Psychology Project.

Though initially the idea was very much along the same lines of a peer support, advocacy, awareness, whatever stuff, the second set of events made it become very much a different thing entirely, at least in concept.  So I will go into what those events were.

I started looking into the possibility of getting assessed for what is currently called Autism Spectrum Disorder (DSM-5 criteria) but has been called a number of other things and has had different criteria over the years (that I’ve been looking at it, and quite a bit beyond them) and was looking around.  For the most part my looking was based on things like Google searches for things like “adult autism assessment” which really didn’t give me any results what so ever, at least not within BC, and possibly not within Canada.

Then I decided to start broadening my search on Google, and start looking for information elsewhere.  I asked B if they may know of where I may start to look for this.  There are connections with B’s work (which was the main thing that drew them away from MFN) so I felt it worth asking them.

In the end I found that I could get an assessment, as part of an application for funding through Community Living British Columbia.  With my contact with them, I found that I was not really being well understood at all.  At least initially.  I emailed the office and had a bit of a conversation with someone there, who told me that I would receive a call, to which I said “I tend to do very poorly on the phone” but I was willing to give it a try.

I received that call.  That call consisted of a brief explanation of what I was looking for, and then the person heard that I had been having a great deal of difficulty with transportation (same 2 hour trip, and I think it was after I had been having increasing problems, and maybe even after I had stopped using it at all) and I said that it may be difficult for me to be able to arrange transportation, and she insisted that I contact what is now called The Ministry of Social Development and Social Innovation (they issue provincial benefit cheques (not sure if WorkSafe cheques are considered benefit cheques or not, but I am pretty sure they are from a different source, even though they are both provincial)) and when I told her that I would get nowhere with them, and that really any “benefit” they could offer in terms of transportation support would be so pitiful as to be not even worth applying (I will not spend over an hour trying to get $7.50 if I qualified for any additional transportation benefit (which I suspected I would not qualify for without something like 10 hours of talking back and forth with the ministry office, my primary health provider, and the clinic doing the assessment)).

She insisted that this was something I needed to do before they would be willing to talk any further with me.  I then emailed the person who told me about the person calling, that the call failed horribly and I had no intention of pursuing it any further.  She assured me that they would be able to find something that would suit my needs in terms of the assessment.

I had made it very clear at various stages along the way that I was looking for a number of things:

Official diagnosis, as that may make getting accommodations easier when I intended to go to school.
Information about what is “going on with me” along these lines (insight from another person’s perspective which in itself will help me see better what I need)
Most importantly, information about what services would benefit me.
I did get number 1.  The official diagnosis.  This, didn’t surprise me.  It really didn’t much surprise anyone who I told, except maybe some family members, but really none of 2, and 3 happened and both were far more important than the official diagnosis.

I contacted CLBC, and the clinic I got the assessment done at, stating that I put a lot of work into trying to get this assessment done, and I understood it was considered “complete” but other than being told what I had already known about myself, and it being made official the assessment provided me with no information.

All through this process I was told “don’t worry, we’ll make it work for you”.  So I continued through this process.  The thing is, none of the process worked for me.  First finding who to contact locally (CLBC) was way more difficult than I had expected it to be (I had to ask someone who worked in the field, who referred me to one agency, which had changed their name, who ended up referring me to a second agency which also had changed their name, who eventually referred me to the third provincial agency (CLBC) but then I had to find a local contact on my own), then getting answers as to the process, then getting the referral even made, then a huge amount of issues with trying to get any kind of accommodation for my difficulties with how the process was being setup, then when I did go, changes to the process (on three separate appointments) which I had been told was going to happen, to what actually did happen.  Repeated saying one thing, then doing something entirely different.  Withholding of my assessment for my benefit for several weeks, as it needed to be gone over so I didn’t get confused by it, misrepresenting me in one pretty significant regard (stating I knew a number of customers for a place I worked at, when I knew a few employees (I believe they all were co-owners) mostly pretty peripherally, this may sound like a fairly minor thing, but to me it is hugely significant, but going into the why it was so significant would probably take at least 1000 more words with how I process things, so I will not go into the why of that right now)), to not getting any answers, to having to get B to talk to CLBC to get them to tell B the kinds of things which should have been told straight to me, to being blocked in trying to get any of the meaningful records which are on account, to being told that these resources are a good fit for you, only to find out that those resources either do not exist, or are not anywhere near any kind of fit at all.

So, this lead me to feel that someone needs to take a serious stab at creating a system which can allow a client to be actually very clear, and very much in control of things such as assessments, and how things work.

When telling someone that what they are doing is causing harm, and being told “No it is not. do you think you are so unique that what works for everyone harms you?” (a bit of a paraphrase as some of this was implied through tone, refusal to take my position at all into account, etcetera, but it was stated that I was not being harmed, and asked if I thought I was unique (with a clear tone that being unique, or at least thinking you are is a very bad thing indeed)), simply leads to more of the harmful behaviour something is very wrong with the system.

So, while I do not really expect that we will be very able to make huge strides in changing any of these systems, what I do hope is that we will be able to provide enough resources for people so that they will be able to use them to help themselves, in ways which are denied to people who are working within the existing system.