Especially within Ehlers Danlos spheres, I see people prioritizing clicks, funding, and attention over accuracy. I see people sharing inflated and unsupported numbers. I see people pushing a narrative that its always EDS. I see people saying that EDS is only mild or only severe so that their own subgroup gets more attention. This is not how we make lasting change. This is how we become a fad. #ehlersdanlossyndome#chronicillness#disability#advocacy
The latest is that the NYLPI filed an emergency request to halt the program and the judge decided it was unnecessary to halt the program due to the fact that training hadn’t even started. Apparently hearings are currently going on (ABC) (NYLPI).
Apparently it’s predicted that police won’t even do it bc it’s so far out of what they are trained and paid to do. They also don’t have the beds to feasibly do this, at least not with any humanity(NPR).
It wasn’t as easy as it should have been to find updates on the planned New York Mentally Ill round up so I figured I would share what I found: #disability#MentalIllness#newyork
I want to be as honest as I can be, especially on this platform, so I have a “confession”. I am finding it very difficult to keep up with everything, which is part of why my team and I have decided to add palliative care. That appointment isn’t till April. This is why I’ve been absent from this platform. The type of posts I want to make here require a lot of effort and time that I don’t have. I am not sure what to do. #disability#chronicillness
Sorry I haven’t been on here much. I’m dealing with really bad and worsening fatigue. Doing almost everything feels near impossible. I hope to have some major posts by the end of the year though.
People are writing to the whole gambit of NYC officials, which I plan to do as well. However, I’m not sure how effective it’ll be. They know it’s wrong. They know it’s illegal. They also know those that they are targeting probably can’t get lawyers, at least not the vast majority. I think a more monetary approach is needed here, or going above those who already made the decision to do this.
