On The Passing of John McCain

black background with yellow textbox and black text: On The Passing of John McCain Not Standing Still's Disease

Senator and former POW John McCain died yesterday.

Scroling through social media, I’m dismayed. I keep seeing statements from people who have forgotten McCain was not a man of the people. And, me being me, I’m upset by that. McCain was not a good person, at least politically, and we need to remember that. He did a lot of harm to communities – that’s his legacy.

I don’t have to be sad that a person who spent his life harming communities I’m a part of or I support died. This man is not some amazing person to put up on a high pedestal… unless you want to praise the systematic oppression of anyone who isn’t white, cishet, rich, conservative, American-born, and the right kind of Christian.

It’s okay to speak that truth. In fact, I would say we have a duty to do so because the GOP sure as hell isn’t going to take a break from attacking marginalized communities. They’re still scheming while tweeting out their sympathies.

McCain was horribly racist. He used racial slurs and continued doing so, though less publicly. He played a major part in selling sacred indigenous land to mining companies and golf courses. He also voted against MLK day, later saying he wished he hadn’t. Of course, McCain also elevated Sarah Palin which essentially co-founded the birther and tea party movements. That led to the administration we see today, especially with prominent birther Trump in charge.

Don’t forget that this man thought the ACA repeal effort – the one disabled people put lives on the line to stop last year – didn’t go far enough. He fought like hell to stop the ACA from being put in place. Instead of working to fix it, he campaigned on repealing it after it became law. It floors me that someone who helped with the ADA and tried to pass a patient bill of rights could also be so cruel.

On a more personal note, I didn’t have insurance coverage as a child because my mother sucks. Because SJIA is a pre-existing condition, I couldn’t get insurance on my own covering my SJIA until the ACA passed. It took a few years for me to get a job with an insurance option. I can’t imagine having had to wait until then to get care.

I could have easily died if McCain got his way, either by defeating the ACA initially or repealing it. MANY people would have. I don’t have to applaud him for making it through unspeakable things when he would’ve forced many of us into not dissimilar situations.

He could have saved disabled people. We could have stayed on home instead of being arrested. We could’ve taken care of ourselves instead of spending energy on basic human rights. All he had to do was say he would vote against it. Instead he wanted to pull a publicity stunt at the last second, telling reporters to ‘wait for the show.’

While I cried in bed, wondering what the fuck me and my disabled siblings were going to do without the ACA, McCain sat grinning on the inside like a son of a bitch. He did not care that his cavalier attitude was harming people. We were confronted with losing lifelines and he treated it like a game.

I stopped seeking diagnoses for things going on. I was afraid that whatever is going on neurologically or with my heart would get diagnosed. Without protections from the ACA, I could easily lose the ability to get any current diagnoses treated. McCain literally played a part in my poor health last year.

I won’t do about McCain’s legacy. I also won’t pretend that being a POW means he was a good person. What he chose to do when he got home and involved in politics is important. He chose to harm. He was a good republican.

I won’t speak well of someone who took pride in being a selfish asshole. If you choose to do that, you should re-examine why whitewashing history is a hobby of yours.

SOS: Take Immediate Action on HR 620

red background with white circle and red line around circle; red text "SOS: Take Immediate Action on HR 620" and "not standing still's disease" with a wheelchair logo at top
I know there’s a lot going on in our world right now. Please take a moment to help us disabled Americans, though.
HR 620 is being discussed today. This bill severely limits the civil rights of disabled peeps highlighting violations of the Americans with Disabilities Act (ADA).
The following is what I faxed to my House rep using Resistbot. You can do this too by texting RESIST to 504-09:

Please oppose HR 620.

As a disabled person, my rights depend on the Americans with Disabilities Act (ADA) of 1990. HR 620 would severely weaken the ADA, which already is under-enforced.

In addition to limiting our civil rights, it is a classist bill in nature. Requiring specific ADA sections to be referenced requires people to have an intimate knowledge of the ADA, which is not always possible. Regardless, why do disabled people have to continually prove barriers we face?

Please protect my rights, the rights of over a million disabled Wisconsinites, and approximately 57 million disabled Americans.

You can find your House reps here if you don’t already know who they are.

This is especially important to do if your representative(s) are one of the following current co-sponsors:

  • Alabama
    • Terri A. Sewell
    • Martha Roby
  • Arizona
    • Kyrsten Sinema
  • California
    • Scott Peters
    • Ken Calvert
    • Ami Bera
    • Jackie Speier
    • Peter Aguilar
    • Luis J. Correa
    • Jeff Denham
    • Darrell E. Issa
    • Jim Costa
  • Colorado
    • Mike Coffman
  • Georgia
    • Doug Collins
  • Illinois
    • Bill Foster
    • Bobby L. Rush
  • Louisiana
    • Ralph Lee Abraham
  • Michigan
    • Paul Mitchell
  • Minnesota
    • Tom Emmer
  • Oklahoma
    • Steve Russell
  • Texas
    • Michael K. Conaway
    • Henry Cuellar
    • Lamar Smith

You can also take a moment to contact members of the House Judiciary Committee as listed below:

  • Chairman Bob Goodlatte (VA-06)
  • Rep. Jim Sensenbrenner, Jr. (WI-05)
  • Rep. Lamar Smith (TX-21)
  • Rep. Steve Chabot (OH-01)
  • Rep. Darrell Issa (CA-49)
  • Rep. Steve King (IA-04)
  • Rep. Trent Franks (AZ-08)
  • Rep. Louie Gohmert (TX-01)
  • Rep. Jim Jordan (OH-04)
  • Rep. Ted Poe (TX-02)
  • Rep. Tom Marino (PA-10)
  • Rep. Trey Gowdy (SC-04)
  • Rep. Raúl Labrador (ID-01)
  • Rep. Blake Farenthold (TX-27)
  • Rep. Doug Collins (GA-09)
  • Rep. Ron DeSantis (FL-06)
  • Rep. Ken Buck (CO-04)
  • Rep. John Ratcliffe (TX-04)
  • Rep. Martha Roby (AL-02)
  • Rep. Matt Gaetz (FL-01)
  • Rep. Mike Johnson (LA-04)
  • Rep. Andy Biggs (AZ-05)
  • Rep. John Rutherford (FL-04)
  • Rep. Karen Handel (GA-06)
  • Ranking Member John Conyers, Jr. (MI-13)
  • Rep. Jerry Nadler (NY-10)
  • Rep. Zoe Lofgren (CA-19)
  • Rep. Sheila Jackson Lee (TX-18)
  • Rep. Steve Cohen (TN-09)
  • Rep. Hank Johnson, Jr. (GA-04)
  • Rep. Ted Deutch (FL-22)
  • Rep. Luis Gutierrez (IL-04)
  • Rep. Karen Bass (CA-37)
  • Rep. Cedric Richmond (LA-02)
  • Rep. Hakeem Jeffries (NY-08)
  • Rep. David Cicilline (RI-01)
  • Rep. Eric Swalwell (CA-15)
  • Rep. Ted Lieu (CA-33)
  • Rep. Jamie Raskin (MD-08)
  • Rep. Pramila Jayapal (WA-07)
  • Rep. Brad Schneider (IL-10)

For more information:

 

 

Repealing the ACA will kill disabled people

With the proposed changes coming to healthcare, I can’t afford to tiptoe around the situation.
Repealing the Patient Protection and Affordable Care Act will kill disabled people.
50 million Americans with disabilities depend on the protections that the ACA provides. The CDC recently came out with statistics that show that nearly half of all Americans live with at least one chronic illness – and they depend on the ACA, too.
Before the ACA went into effect – before I even started this site – I was uninsured for a while. While my father kept insurance on me until I was 18 as a part of child support, mother didn’t utilize it at all. Without continuity of care, I suffered immensely – not just pain but issues that wouldn’t have happened had she gotten me the right (or any) medical care.
Once I hit 18 and got into college, I was concerned about what to do. I knew I needed to get medical care but couldn’t afford anything.
2007 Kirsten
When I met T, I started trying to get quotes from insurance companies. I was very upfront about the fact that I had multiple chronic illnesses… which led to a lot of sad phone calls and emails. One memorable phone call with one representative got me to give up. I was told that it would be $2200 a month for coverage and that it would not cover anything related to my pre-existing conditions.
Since my diseases affect every single part of my body, there was no point to this. I obviously couldn’t afford it anyway.
I eventually was able to get coverage through our college’s partnership with an insurance company. It didn’t cover much, though, and I began to go into medical debt quickly. Luckily, some of that was forgiven as the hospital I saw my first adult rheumatologist at had a great forgiveness plan for us poor people.
 
Thank you Froedert Hospital.
Still, it was a constant fight. I had to get things rediagnosed or diagnosed at all. This meant far more visits than the average person has in a year with the accompanying blood draws and everything. I moved which meant transferring that care and then dealing with insurance not covering a lot…
which meant more medical debt (that we only recently paid off).
I’m lucky enough that I’m married to someone whose insurance covers me. It’s good insurance and allows me to have access to the specialists I need to see.
Not everyone is so lucky.
 
Others with disabilities or chronic illnesses rely on more services than I usually need. Others are better at seeking out the care they need than I am. Others simply have different needs that wind up costing more like wheelchairs and other equipment – along with the medical visits for physical therapy, etc.
Hell, if T and I ever got divorced? I’d be practically as good as dead. There are worries that these efforts will force those of us who need healthcare access to stay in abusive relationships because, like me, they need that coverage.
My family will still be affected by the ACA repeal. People in my family or group of friends will lose medical care making access to the life-saving medications and treatments they need nearly impossible. More people will go bankrupt or lose their homes as a result of medical issues. Others will no longer be able to afford to live in more accessible housing, accessible transportation, and more.
 
Some will die.
The ACA provides protections for many people – things that are often overlooked when we talk repeal.
It provides access to free contraception, yes, and better access to reproductive health care – but it also allows children up to age 26 to stay on their parents’ insurance plans.
It provides coverage for people through subsidies, but also (finally) makes good on a centuries’ old promise to Native Americans to cover their health needs.
Clinics in rural areas who depend on the ACA protections to keep them going will go out of business and jobs will be lost.
The things I care about the most? CHIP – the Children’s Health Insurance Program – and coverage for our pre-existing conditions? Those were basically just dumped.
 
If little Kirsten was young today and lived with a parent that wasn’t abusive? She would be incredibly screwed.
It’s not enough for those now running our nation to take progress back – they have to enact legislation that will remove protections for those of us with disabilities and pre-existing conditions. They have to kill us before they’ll be happy.
 
Write to your legislators. Call them. Tell them how this will affect you and nearly half the nation. Tell them that, like me, you’re not ready to die for their petty politics and racist ideologies.