Hi! It’s been awhile since I’ve posted my life has been a mess. Between work and dealing with my “lack of” care manager not listening to me. I’ve doing a couple of advocacy projects as well.
The Feds waved money at the Governor’s face. However, they’re not going to give it to us right away until we have a plan to use it properly HAHAHAHAHAHAHA! Which means, that the disabled folk get to have a say. So I was working on my “written testimony” all last month and submitted it yesterday. HOPEFULLY they’ll actually listen to me this time. From repealing the college rule, a specialized healthcare insurance outside Medicaid through OPWDD, and to not have Governor appointed shmucks represent us anymore! Look what that did for us during COVID? Speaking of healthcare…
Thanks to a lovely little email from CIDNY, there is a state law in committee for a universal healthcare for those like us but, here’s the catch —everyone has to pay taxes on it. In addition, they’re making the same STUPID MISTAKE of having a Governor appointed committee to regulate our services through the new bill. UGH! IT HASN’T WORKED BEFORE COVID AND IT NEVER HAS! WHY DO YOU STUPID ABLES MAKE THE SAME STUPID MISTAKES? A GOVERNOR APPOINTED COMMITTEE WILL GIVE HIM THE UPPER HAND AND HURT US AND OUR NEEDS!!!! DIDN’T CIDNY READ ALL THIS BEFORE ENDORSING THIS?? WE’RE NOT BEING HELPED AT ALL!! For people who care about our independence from the system, they need to make sure it helps us WITHOUT our able neighbors paying extra and WITHOUT being treated like we’re vegetables by government shlubs. These Governor appointed people NEVER advocate for us and never will so I say NAY to the new bill in committee until it helps both sides.
TK my author in crime is letting me take over the blog. I saw all your comments about some of my posts. And I felt very upset that some of them were misinterpreted. However, mistakes are what make people human. I have deleted the racist posts. However, in place of it will be this.
Like everyone else last year I was going through a lot of shit. Between COVID, protests for racial equality that I had a hard time understanding, and an election that was full of controversial things on its own, why don’t we revisit the privilege thing. Because TK and I feel being privileged is more than just a racial issue. It’s also an accessibility issue as well.
Think about it, if I weren’t verbal what would happen? Would I be treated well? Would I be able to have a life?Would I have my decisions respected? It’s sad to say, but no. People who are semi or non verbal are treated worse than those who can. They are refused access to alternative methods of communication and are treated like they are vegetables that have no intellect. Who sticks up for them outside their parents? Who accommodates them? Are they protected? No! They are not. Not even ADA protects them from a denial of access. It’s supposed to but it doesn’t. What’s ironic about it, is that the law was drafted by a disabled person who used a wheelchair. She made the law written in a way that only favors those like her and forgets everybody else. Whatever she did write for people with other disabilities really screwed us all over for the last 31 years. One word wrecked us all —reasonable. Reasonable means we can ask, but whomever we do gets the final say — not us. It denies us academic support, lodging accommodations, and gives MORE PRIVILEGE to those who can handle full time learning than those who prefer part time learning. Those who have money for better supports have MORE PRIVILEGE too. Those on Medicaid for services have very little help or privilege at all. The Medicaid services are of poor quality and won’t even support the opportunity to get a college degree. They think we’re “dumb” because we need extra support. This is where privilege becomes a civil rights issue. Yet, the politicians think privilege is race only. This is where they are wrong. This is why the state programs that are supposed help us don’t. ADA doesn’t protect the privilege of having an education, a house, financial stability, quality health care, having a life and being treated with respect by non disabled folk. Federal and state law are connected to each other. If the federal law is poorly written it affects the quality of state laws. The federal law is the blueprint for what the states can do — not respect or fully accommodate people. We need to convince Congress if they want to truly be inclusive, #reviseADA. Awareness isn’t enough anymore. WE WANT RESPECT.