So sorry if I missed you with all the bananapants technology stuff. And thanks to folks who hung out and chatted. Okay, first thing to remember IF YOU GET BAD HEALTH CARE IS IT NOT YOUR FAULT. That’s not what medical self advocacy is about. It’s about having skills and tools to work in an imperfect system.

The notes for the Talk the Talk: Improving Medical Self Advocacy by Learning the Vocabulary of Health Care Providers is here.

I mentioned the video about how to deal with the emergency room….which is a great thing to think about before you have an emergency is here.

I put together a zine called You Don’t Have To Love Your Body to Take Care of It, it’s all crowdsourced ideas for medical self-advocacy, especially for traumatized folks. You can find that here

If you’re struggling with getting a pap exam, I have a zine about that too, it’s called Hey Let’s Go Get A Pap Exam, it’s here.

Need an inspirational (and hopefully grounding) coloring sheet for your medical provider visits?

Finally, if you just need a laugh, here’s a little taste of my new comedy CD NOT The Gym Teacher. I’m touring this winter and spring with House Concerts For the Resistance which means I will come to your house (or other location you provide), make your friends laugh, and you can pass the hat for any progressive/ human need cause you’d like. Details here.

FINALLY MY PHONE NUMBER IS 215.964.1963, TEXT ME IF YOU HAVE QUESTIONS. OR REACH OUT VIA EMAIL AT KELLIDUNHAM@GMAIL.COM OR ALL THE REGULAR SOCIAL MEDIA CHANNELS, IF THAT’S BETTER FOR YOU.

YOU DESERVE HEALTHCARE

YOU DESERVE HEALTHCARE

YOU DESERVE HEALTHCARE

Whoa thank you, so glad you stopped by. If you’d like to keep in touch and hear about new health resources as soon as Kelli puts them together, as well as get the free bonus tracks when NOT The Gym Teacher releases later this year, sign up for very light (never more than two emails a month) list right here.

HEALTH STUFF:

Kelli’s zine about how to get a pap exam cleverly entitled called HEY LET’S GET A PAP EXAM is free for the download right here.

The list of medical strategy words is right here.

And then there’s the You Don’t Have To Love Your Body to Take Care of It, a zine with tips and tricks about how to battle for healthcare when you have a trauma history:

This one is better if you’re only downloading it (more colorful and such) and this one will save you a little ink if you’re going to print it.

One of the worksheets from You Don’t Have to Love Your Body to Take Care Of It. The zine also includes worksheets that can help you figure out how to self-soothe at the health care provider’s office, how to negotiate for a health care buddy and much more!

FINALLY, IF YOU TOOK DOWN KELLI’S CELL PHONE NUMBER AT THE EVENT, DON’T BE AFRAID TO USE IT! KELLI ANSWERS TEXTS FROM FOLKS NEEDING SUPPORT, ENCOURAGEMENT OR TROUBLESHOOTING ALL THE TIME, PLEASE REACH OUT (215.964.1963) IF A LITTLE PUBLIC HEALTH NURSE/GENDERQUEER COMIC ENERGY MIGHT BE HELPFUL!

There’s a reason why folks who use MTA’s paratransit service “Stress A Ride” and it’s not because we all love hyperbole.

So here’s the deal: I have a mobility disability. It’s relatively minor all things considered but it does makes it impossible for me to ride the NYC subway unless I just happen to be close to one of the, oh, less than 24 percent of the subway stations that have working elevators. Are you asking how is that possible, isn’t that against some law? Oh yeah. Definitely. In fact, every day MTA is in violation of a little thing called the federal American with Disabilities Act. It was signed into law in 1990, and MTA has must have heard of it by now, because they get sued about it like, all the time. Like pretty much the MTA Managing Director Veronique Hakim must be getting subpoenaed in the shower by now. MTA’s story (and they really keep sticking to it) is that they provide service for people with disabilities through the Access A Ride program. The problem with this story is that Access A Ride is what we call functionally inaccessible, in other words AAR SUCKS.

And it’s not just AAR’s beleaguered patrons who say this: NYC Comptroller Scott Stringer issued a report in 2016 that contained a severe condemnation of the Broker Car Services to whom AAR outsources most of the rides for patrons who don’t require wheelchair van service. From the report:

“Paratransit failed to effectively monitor AAR contractors’ compliance with contract requirements for reliable and timely customer service and accurate reporting of pick-up and drop-off times.  As a result, customers suffered from unreliable and unsatisfactory service.”

Shortly after this, AAR debuted the E-hail program which allows passengers to schedule service 24-48 hours beforehand and receive services from a yellow or green taxi. This program was wildly successful.

A few weeks ago, a Daily News article announced that AAR is eliminating ehail. And sure enough, that is exactly what I’ve been told NUMEROUS TIMES when I’ve called my friends at Stress A Ride. So the folks who answer the phone at AAR know that the ehail program is being eliminated; less and less ehail rides are available each day until April 30 when zero will be available. I haven’t gotten one in two weeks. But AAR Spokespeople apparently haven’t been informed of this, and they keep doing this weird (and cruel and gaslightly) thing where they refuse to admit that this is the case;. They keep talkin’ about the continuance of a very small (less than 2000 rider) pilot that allows on demand ehails. But they’re simultaneously eliminating the advanced Ehail option for the vast majority of riders. My dad used to say “don’t piss in my face and tell me it’s raining.” That applies perfectly here.

My trips since the changes took place have been exclusively with Broker Car Services and most of them have been late and the drivers have often been rude, unable to communicate and in one case, the driver WENT TO BROOKLYN to look for an address in Manhattan. Yup, for 45 minutes the driver kept insisting that he couldn’t see me even though I was standing outside. Of course the dude couldn’t see me, he was in Brooklyn and I was in Manhattan! I called the Broker Services/AAR more than 12 times to try and work it out but they told me I would need to call Access A Ride and reschedule if I wanted someone to come pick me up yknow, where I was, and not the next borough over. By that time I had been standing for over an hour. And remember that mobility issue I mentioned? It stems from getting hit by a car at age 12, I’ve had five knee replacement revisions, and it hurts like a motherfu**er to stand that long. So I told them I gave up and took a $45 dollar uber home. Eh whatev, who needs to pay their electric bill.

But that’s not all, folks, there’s more. You’re not going to believe this part. Well unless you take Access A Ride. Then you will 100 percent believe it.

I WAS STILL MARKED AS A NO SHOW. This isn’t just a labeling problem; being marked as NO SHOW too many times in a month (and believe me, it ain’t that many) can make you lose your Access A Ride service. When I lodged a complaint with MTA, they responded that in fact the driver was in Brooklyn (see screenshot below) but they will only say they passed the complaint on to the Broker Car Service. And (this is the infuriating part) I am still on-demand a no show in the system. This process of letting the broker car service investigate their own complaints against them is exactly what Scott Stringer referenced in his 2016 report!

TL:DR: AAR is gaslighting us when they say they are not eliminating ehail. They are eliminating advance ehail for all; only a small pilot program remains. And the “enhanced broker services” are clearly the same exact broker services that got them into trouble before.

WTF is this all about? Is it just my imagination, or does this city (which I love) totally hate people like me who can’t manage 5 flights of stairs just to get to work?

Can someone, anyone PLEASE take MTA to task for grossly misleading their patrons and public.

Kelli DunhamFlatbush Brooklyn NY

It’s easy!

Well maybe not easy. But simple.

Here’s the five steps to create a local first person storytelling show.

OR if you’d like to bring Kelli to your campus to help do a one-off (or annual, or help start an ongoing) queer storytelling event all the details are here:

Click here to download so much TSA fun! or um, harm reduction anyway

 

 

Here’s the info I promised folks who attended my Medical Vocabulary for Medical Self Advocacy workshop.

You can also download a PDF  HERE

By Kelli Dunham RN, Stand Up Comic, Annoying Uncle Who Wants You To Be Okay (kellidunham.com)

-Health care providers have tons of unearned power (you use your first name, they use their last name, they are clothed, you might be some variety of unclothed or weirdly clothed, etc)

-The world of healthcare is its own specific culture and language. Being able to move through that culture and speak that language can sometimes help you get what you want and need from providers.

-Providers can be beautiful people (I know many awesome providers and I’d like to think I am somewhat awesome myself) but we are also flawed humans and have soft spots and egos and areas of personal limitation.

-The system is inherently flawed, built as it is on capitalism and often provider convenience.

-You are never responsible for bad health care and you should not be in a place where you have to so strenuously strategize for your basic human dignity.

-However, since we had to receive health care FROM THE SYSTEM WE HAVE NOT THE SYSTEM WE WANT, it can be helpful to have some tools at our fingertips to use.

“I THINK WE ARE HAVE HAVING A MISUNDERSTANDING”

This is a useful phrase when you need to correct a provider but still wish to allow them to save face and/or you don’t wish to challenge their ego which of course can have its own consequences.

“I THINK IT WILL WORK BETTER FOR BOTH OF US//I KNOW WE’RE IN A TIME CRUNCH”

If you need the provider to change their approach, use different words for your bits etc, it can help to acknowledge the fact that almost all healthcare is provided by folks who are constantly being harassed to provide it faster. Primary care providers often only have 12 minutes to address the specific problem you’ve walked in with (and who walks in with one problem). Referencing the time pressure and acknowledging the provider also has needs/wants in the interaction can help it feel like patient and provider are on the same side.

“MY GOAL IS/ MY PRIORITY IS…”

When you walk into a provider’s office, they may see this as an opportunity to address your overall health. Sometimes that’s about being a bossypants body colonizer and sometimes it comes from a place of “Oh shit this person never comes here. Let me help them with EVERYTHING.” Either way, it means you are in the position of trying to deflect questions to get what you came for. Sometimes what you came for is really impacted by something the provider wants to address, in which case it makes sense to listen. But if they’re clearly off on a tangent and because of your trauma history (or hell just being a vulnerable human) you’re about to blow something, redirect them with the words “Yes, I understand but my priority is X.”  You might need to repeat it a few times.

“I WAS READING SOME STUDIES /THE MOST RECENT LITERATURE…”

This is a tricky one because you want the provider to think you’re an informed patient, not a know it all.  (cough egos- cough) Most modern health care providers embrace or at least expect their patients to have consulted Dr Google before they come in, but make it clear you’ve done your research looking at reputable/peer-reviewed sources. Hint: Anything that involves Gwyneth Paltrow is not a reputable source.

“I FEEL LIKE YOU MIGHT BE JUST SEEING ‘NONCOMPLIANT PATIENT’ BUT LET ME EXPLAIN MY THOUGHT PROCESS/SITUATION”

If you haven’t been doing something a health care provider told you to do, there’s probably good reason for this. Explain to the provider what the reason/life situation is for the choice so that they can make a different, better or more nuanced recommendation that will work for you.

ABOUT THE PAIN SCALE

The 1-10 pain scale isn’t perfect but it’s what we’re using right now. One of the drawbacks is that everyone literally has their own reference point (“the worst pain you can imagine”) and this makes it not always useful for diagnostic purposes. So provide a number, and do make it between 1 and 10. Otherwise providers roll their eyes up into their heads. But also add a functional comment. For example, “The pain is a 7, I can still talk but it makes it hard to even stand up when it’s at its worse”

I REFUSE

I REFUSE: This is the SAFE WORD of healthcare, essentially a sledgehammer of a word that means FULL STOP.  Be specific about what you’re saying full stop to. If you say I REFUSE CARE that will get out that particular situation but will also mean the healthcare interaction will come to an end.

You can use a variation like “I refuse this procedure” or some of the other words/phrases above to slow down the situation.