Todays Background Music → Positive JAZZ - Morning Music To Start The Day ←
Highlights for today: Fortnightly Therapist Home Visit and meeting new prospective support person. I've put off opening up about it because it's been a very sensitive subject for me. The build up to the change over highlights quite well my struggle with the government program I am currently on. I try not to talk about things so personally anymore because of the ego trap that Eckhart talk about quite a lot. Yet at the same time I think it's more a case of writing from a place that's not so entrapped.
Basically I had to eventually terminated support based on community stigma combined with my previous support person's decline in health impacting the nature of my supports. These latter issue was more leading more to the former. Stigma is such a tricky topic to touch on. I've known and been engaging with my previous support since 2014. As you get older you begin to appreciate not burning through bridges. I regarded that support as a friend and kept him on longer than I should of given how his own problems were impacting mine. I knew he was struggling financially as he often talked about those struggles to which I fully appreciate and he also had family that he was supporting. I had made working with me so easy that I in the end I was more supporting him than he I. Is all good ... I liked the guy and we got along well all things considered. The problem was that as his condition worsened, his professionalism or skill when supporting me dramatically also declined.
All my conditions for the most part could be termed *Invisible* although not entirely as depending on the environment and circumstances it becomes clear that I struggle to engage. I'm actually very accepting of these difficulties and it only really becomes an issue when others have trouble conducting themselves when dealing with me. Of course some people are more tolerant than others.
Being supported as someone who so obviously can articulate in this space as I do now, but then disabled in another space no seen by those reading or being unable in the eyes of supporters when out and about to then being seen more able in my own space can create all kinds of doubt. Those more privy to my records and trained in whatever way, will be afford me the required space - BUT - those in the community who are still not farmiliar with the concept of people with invisible impairments generally do not have the awareness and in other cases do not care at all for people whom struggle to complete forms, get through the line as quick as others, not hear properly, not understand basic signs or directions and so on and on.
Here's the thing for me and others similar to me that I have queried (a few likeminded peers locally) ... Having a person along your side for moral support can do wonders in helping us to engage on our own, and do so in a way that is less troubling for others waiting. I mean let's face it we do live in a rush rush world and half our problems would not exist if not for nature in which we live. In some ways I am kind of in the middle of someone in a wheel chair whose image is seemingly more accepted where some people might even rush to a door and open it for them to that of an old person subject to all manner of gossip at the back of the line because the poor old fart just can't seem to get a grip with how much money they have, what card they are scanning or what buttons to push.
Me - I'm the guy in his 50s struggling like the old person for a number of reasons to long to list. That said I do feel it's helpful to try. Mindfully so though. The insanity comes when I am unable to convey and people treat me as poorly as the do old people which when I see that also happening just creates more conflict and thus unable. My involuntary behavioral patterns linked to hyper sensory perception as that be to autistic spectral disorder overlapped with hypervigilance as that relates to chronic complex PTSD, not excluding ADHD with all that obviously explaining well my social phobia ... although I'm not embarrassed as nearly as much as the latter implies ... make it extremely difficult for me to participate in a world with so many expectations and directives. What I have expressed here has nothing to do with bad behavior. Unfortunately most people in the community operating on the level of consumption do not understand people affected like so. Understanding why this is so can be helpful but does not really change anything. Actually such insights can be depressing when allowing ourselves to give to all that negative energy. Thankfully this does not always have to be the case.
Many times I have actually questioned the program I am on. The nature of permanence undermined by the continual process of warranting, the supporting evidence as based by whatever, it just goes on and on. This being one dynamic separate to the stigma we all face from day to day no matter our claims or so called identities.
So with all that context out of the way in what I hope was not a rant but just simply the most objective way I could convey my perception - that as my ailing support person himself became less able and we were no longer engaging whilst out and about, I started looking more disabled and my support person looking more like a shadow. (This is one for the text book) As a result people started treated us accordingly. Even during times I would attempt to engage, at say that check out of a store, the staff would look straight past me where my support worker would then take over. Such is a very disabling moment for the client and most support workers will appropriately redirect. People are people ... some in the community are not comfortable dealing with disabled people and even less with those they think is nothing wrong with. Stigma, mains stream media and social media all play a large part to that. Work ethics, Ideology and so on. At any rate - to avoid such bias rife in the community most clients with invisible disorders tend to recoil from having community supports in such public interaction. So it has been for my peers I mentioned earlier. I am one of the few I know that actually utilizes that side of support.
Anyways ... to finish off with our parting ways - It was after airing my concerns many times to my support person that I feel uncomfortable when people ignore me when I am out and about engaging on matters that pertain to me. That they should be dealing with me and not my support person. I tried to explain that I understood how some people might be put off with my demeanor as I have a hard waring face, not the fanciest clothes, need a shave or whatever but still pressed the point that it should be me that they are directing attention too. Now that said, I understand that it's not easy for support persons as the mood of client and presentation re above, can indeed affect interactions on both sides all sides of the fence. All the more reason client and support persons be well matched. I'm glad to say I've done well on my side of the fence compare to days of old. Yet the stigma has driven me into the ground in the way people just ignore me since my support person stop engaging with me when out and about. Instead they did all the engaging in a way that made the job easier for themselves.
The last straw was when a food doctor asked me if I could read after having just listed my diagnoses. Basically he wanted to do hand deliver something that he could simply have his secretary scan and email. It was pretty clear I was well read. What was more the issue was explaining the nature of how I had struggled with keeping the appointment times and that the reason I had a support coordinator (separate position to community a support person) assist with the paper work was because I needed help with that side of things. I suggest in this case given the nature of my billing and support that it would be better if his secretary simply scan and email it.
It was at this point the doctor started using my support person as a means to ignore and isolate me. I think that line sums up what many in my position know so well when it comes to such bullying. Suffice to say after keeping my cool, I did make a few emails of my own. I terminated the service agreement with that health dept. I also terminated the service agreement with my the long time support person. I was as gentle as I could be explaining similar to above. I also terminated the Support Coordinator as they had been very clinical in their dealings with me and not truly understood the struggles I have been having with the process/es of being supported on said government program. It's all be very dehumanizing where I question very much if it's worth being on. It's a tough call because when you do manage to get people that understand, work towards, know how to redirect, engage, and all that kind of thing, the concept of help can work.
OK - That's kind of why I am meeting with a new prospective support worker, have a seemingly pretty cool new support coordinator and so on. Meeting with my therapist is just how I like to do it these days. I hope some of this came out alright as I am not trying to make up a new story or anything ... just trying to work out my next moves without dragging other people down. It's all about trying to make the system work to one as best they can.
I finish this up as I can literally sense my therapist at the door.
Back Soon enough ... Srry but no time for edits at this stage. All good.