story time and trying to cure my disablity
Disclaimer – That these are my own lived experiences and understanding from the research that I do around the NDIS and health-related topics please be aware that it is informational only and not to be used as a substitute for professional advice or working with a Planner, Disability Advocacy service or talking to your Medical and Allied Health team.
This post and video came from a variety of events happening to me at the same time and one was the realization that I had very little in the way of boundaries around my friendships and I had been taken advantage of due to a person who seems to want to save people from themselves and she gets very frustrated when one of two things happen, She realizes that they can't be cured due to them having a chronic illness and the very definition of chronic illness is long-lasting and persistent. Or they wake up to what she is doing to them and she has a very nervous energy about her and this nervous energy seems to be something that gets worse when she sees that she can't cure them and take the credit for what she is doing.
I am in a group that I mention in the video around gardening and reducing our waste it is a barter system and this person just thought that I would accept after she had pushed out the adminstationers as all of this is organized through Facebook and this requires the administration team to be very aware and spend lots of time on the internet and she just thought I would magically have time and jump when she said how high.
It came as a shock to her that I didn't jump and that I was putting boundaries in place for what you are doing,
I talk about this because it highlights some facts about society a bit too well, and this is that people are still uncomfortable with disabilities or chronic illness and feel that it's ok to invalidate our experiences because they did a diet or blood test or a program that cured what they had and this is what we need, this person has o medical training as well, don't get me wrong she is well-intentioned but the road to hell is paved with ill intentions and this is the very epitome of it due to the fall out that her decision in the administration team had, to the point some of the volunteer administration team resigned and this person was very surprised about this but she seems to have very little situational awareness around what she is doing and how it affects others.
As did others in my life until they ironically got diagnosed with ADHD themselves through some of their children being diagnosed with Autism and ADHD, and this has led to a shift in the way that my friends see me because they are now aware that some of my behaviour's I can't control and this is simply how it is and this is why I need support.
I also have others suggest to me herbs or supplements and some of these while known to have an effect the reality is that people need to be aware that while well-intentioned we have specialist advice and we need to listen to them as some of these herbs could interact with what medication we are already on or we might have already tried it.
This type of person is often called the white Savor or in movies depicted as such because they believe that they have a moral obligation to save people from themselves and this is such a bad idea that will end in frustration for everyone better alternative is to ask the person what the need and to listen to them as talking to them is very different to communicating with them because people need to be aware that not everyone wants to change or can change there situation. As well as the fact that even AA programs have the premise that the person wants to change first as they need to make the decision to change and this is where it gets tricky in disability because some of the behaviour's might be trauma-based and these actions can add to the trauma and unintentionally harm the person because they are dealing with things that the person is very unaware of and this is where empathy and situational awareness comes into play.
- The banality of evil transmutes into the banality of sentimentality. The world is nothing but a problem to be solved by enthusiasm.
I feel that this quote by Teju Cole is quite an appt in this situation because it shows that this is not an isolated case and taking a very famous quote from Hahana Arnet from Eckman in Jerusalem, we see that people think we have changed and learned lessons from that point in history but we haven't because the people coming up with the solutions are creating unintentional consequences because they forget that people need to have a voice and in the case of disablity activism yes people with physical disability's have forget and one projection's like the anti discrimination act or brought the NDIS into being but the unintended consequence's is that people don't seem to like that it has empowered the people that they were able to "speak for," because they now had a voice and this rent there efforts to what they really were tokenistic approaches to a broken system that people saw a need to fix but saw more value in "campaigning,' for change instead of actively working with those who where in a position to bring about change such as organizing a campaign to email politicians and get govement to change it's position and to keep the pressure on the govement when they see it as a cost and not an investment in people and this is the reality for many people with disabilities world wide, that I will go into in a another post.
I am not going to discount that the awareness when done in honest and open consultation does mean that people are given a voice but then it needs to be followed up with being able to bring about change as awareness does little but bring about a need to "fix," this issue, however, there are some issues that can't be fixed on a societal level and this awareness just brings about the flip side of the coin white guilt. This is where a person's skin colour and perceived level of a privilege it brings is something that we need to talk about as well as this can play a role in the way that people see the world and this guilt that is pressed onto people is unfairly pressed onto people that are powerless to bring about the change that is needed, this change states that people need to be aware that they can't help everyone and by rescuing people from there situation it actually diminishes the opportunities for them to learn and grow
As what I perceive as the situation and the reality is two very different things that we need to be fundamentally aware of when working with me or helping me out this is where communication vs talking to me comes into play and this is something that can be challenging for anyone as there is a massive amount of subtext that comes into play around how people communicate vs how people talk to one and other as well as cultural and age differences come into play as well.
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