Hey folks at the Trans_ Conference at Hampshire College

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

If you’re headed here after the Butch Voices conference….

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!

QUIT GASLIGHTING US ACCESS-A-RIDE

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!

Seriously y’all? This is like if your boss went to Conference Room A when you had agreed on Conference Room B, and then docked your pay for not attending the meeting. Wouldn’t that make you BANANAS!?

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

Want to create your own storytelling series?

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:

Notes from Philly Trans Wellness Conference: Strategy Words for Medical Self Advocacy

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.

Notes from SEIU Nursing Conference

Hi amazing nurses I met at the SEIU conference! Thanks for the great discussions! Here are some of the resources I referenced during my presentation, we didn’t really get to the scenarios because everyone already brought up their own scenarios (which was perfect) so I’ve included them here as well. Don’t forget if you need help, reach out to me! I am available my email (kellidunham@gmail.com) or text (215.964.1963). You can also call, but sometimes I’m a little slower with that.

A resource I meant to mention during the workshops but didn’t: A brand new book by Kimberly D Acquaviva, LGBTQ Inclusive Hospice & Palliative Care, is a great resource not just for the information about hospice/palliative specific care but for the broad overview it provides about historical barriers to care and ways to encourage colleagues to provide competent care.

RESOURCES FROM SCENARIOS

SCENARIO#1:  NOT REACHING LGBT PATIENTS WITH SMOKING CESSATION PROGRAMS

Name: Fenway’s Health Education Center Reducing Tobacco Use in LGBT Communities How Providers Can Help
Site: http://www.lgbthealtheducation.org/wp-content/uploads/Reducing-Tobacco-Use-in-LGBT-Communities-Final1.pdf

How to Run a Culturally Competent LGBT Smoking Cessation Group
Site: http://lgbttobacco.org/files/Bible.pdf
Note: Targeted for folks creating programs from scratch in their communities.

Name: CDC Smoking Cessation Tips From Former Smokers
Site: http://www.cdc.gov/tobacco/campaign/tips/groups/lgbt.html
Note: This contains links to video tips from former smokers who are members of the LGBT community.

Name: LGBT Healthlink: Order LGBT Culturally Competent Smoking Cessation Materials
Site: http://www.lgbthealthlink.org/order-materials
Note: Includes infographics, posters etc targeting the LGBT community.

SCENARIO #2: ALL GENDER BATHROOM “PEOPLE SHOULD STAY AS GOD MADE THEM” RESPONSE

Name: LGBT Task Force Links to Resources for ALL Communities of Faith
Site: http://www.welcomingresources.org/multifaithlinks.htm

Name: HRC’s Faith Position Page
Site: http://www.hrc.org/resources/faith-positions
Note: This site contains links to the official positions of many major world religions in regards to LGBT people and issues.

Name: I’ll Go With You
Site: http://www.illgowithyou.org/
Note: A campaign that encourages allies to be available to accompany trans folks to the bathroom or other places they may face discrimination or violence. Lots of excellent information that points to the importance of all gender bathrooms.

SCENARIO #3: REACTION TO OLDER LGBT COUPLE DISPLAYING AFFECTION

NameL The National Resource Center on LGBT Aging
Site: https://www.lgbtagingcenter.org
Note: This can be your first stop for all things regarding providing care and resources for LGBT older adults.

When Health Care Isn’t Caring: Older Adults Living with HIV
Site:https://www.lambdalegal.org/sites/default/files/publications/downloads/whcic-insert_lgbt-older-adults-and-older-adults-living-with-hiv.pdf

No Golden Years At the End of the Rainbow: How a Lifetime of Discrimination Compounds Economic and Health Disparities for LGBT Older Adults
Site: http://www.thetaskforce.org/static_html/downloads/reports/reports/no_golden_years.pdf

Nurses’ Health Education About LGBT Elders
Site: http://www.nursesheale.org/
Note: This is a curriculum (available for purchase and developed by the Howard Brown Health Center) to help fill the knowledge gap for nurses about the health needs for LGBT older adults.

OTHER SITES, RESEARCH REFERENCED IN PRESENTATION

Name: Joint Commission’s Guide to Culturally Competent Care of LGBT Persons
Site: https://www.jointcommission.org/assets/1/18/LGBTFieldGuide_WEB_LINKED_VER.pdf
Note: Contains lots of great info about coding sexual orientation and gender identity in electronic health records.

Name: Fenway’s LGBT Health Education Center
Site: http://www.lgbthealtheducation.org/lgbt-education/learning-modules/
Note: Contains powerpoint presentations on many different aspects of LGBT health including information about Pep and Prep, Achieving Health Equity for LGBT People, caring for LGBT young people, older adults etc. They also have webinars that are FREE and offer CMEs and CEUs!

Name:Fenway’s LGBT Health Education Patient Brochure Explaining SOGI Questions
Site: http://www.lgbthealtheducation.org/wp-content/uploads/2016/08/SOGI-Patient-Handout.pdf
Note: This is printable patient brochure that answers the question: “why are you asking me about sexual orientation and gender identity?”

OTHER RESOURCES OF INTEREST

Need access to  rigorous, independent research on sexual orientation and gender identity law and public policy?
Name: The Williams Institute
Site: http://williamsinstitute.law.ucla.edu

Need a resource to teach students about the history of HIV AIDS especially in the LGBT community?
Name: United in Anger: An Oral History of ACT UP
Site: http://www.unitedinanger.com/

Need info targeted for primary care providers learning about hormone replacement therapy for trans folks?
Name: Lyon Martin’s Hormone Therapy Cheat Sheet
Site: https://transline.zendesk.com/hc/en-us/articles/229373288-Hormone-Therapy-Cheat-Sheet

If you need more comprehensive information about trans health check out:
Name: UCSF Center for Excellence in Transgender Health
Site: http://www.transhealth.ucsf.edu/trans?page=guidelines-home

Need a book that includes stories and essays about LGBT health written both by lay people and by providers AND that includes diverse voices and an intersectional lense?
Name: The Remedy: Queer and Trans Voices on Health and Healthcare edited by Zena Sharman
Site: http://www.writetheremedy.com/
Note: I have an essay in this book and recommend it highly but have no economic interest in promoting it.


KELLI’S WRITING / RESOURCES ABOUT LGBT HEALTH

If you’d like me to come to your event, college, health system etc all my booking information can be found on my website:
https://www.kellidunham.com/booking/about-health/

Please email me (kellidunham@gmail.com) or phone/text me (really! You can: 215.964.1963)) if you need any resources, information etc. I might not have every answer, but I’m glad to help search for what you might need or connect you as I am able.

Just Hit Send…

…was published on the beautiful PrettyQueer.com New Year’s Day 2013.  PQ isn’t operating anymore and so this piece has been off line for a while. But there’s  a postscript (because, life) so even though this essay is more self-revealing than what I normally write, I decided I wanted it out in the world.

——————————————————

Being the youngest child of a rural family that loves alcohol and ambition in equal parts, I’m never wholly impressed with New Year celebrations.  You call that drunk? We puke up more vodka before 9 am than most people drink all day.

You call that planning for a New Year? My dad read us Brian Tracy’s “Seven Goal Setting Habits” in our cribs. Of course, if you want to bypass the alcohol and go right to ambition, you’ve got to keep really really busy, so my wall is always covered with post it notes detailing my quarterly goals and foci no matter what time of year it is.

Adult children of alcoholics overcompensation notwithstanding, I’m a sucker for a good slogan and I’ve been thinking about one for this next year. I’ve decided on “just hit send”

“Just hit send” was a mini-meme created by the thoughtful Anne Elliott at the New York book release for Cheryl Burke’s My Awesome Place  in October of this past year.

Cheryl Burke (aka my beautiful girlfriend) wrote this amazing memoir about her escape from New Jersey and parents who break plates of pasta on your head for getting into a good college, a descent into booze and drugs and really bad relationships with dudes and chicks, tearing up the 90s New York performance poetry scene, finding a community and a home of her own and ultimately getting sober. It was a damn good book, funny and heartbreaking with the sardonic humorous spin that was very engaging and very much the way of Cheryl.

She wrote it, and rewrote it and rewrote it and rewrote it. And then, of all things, her beautiful, vegetarian, nonsmoking, sober for over a decade self developed Hodkgkin’s lymphoma and within eight months she was dead from a pulmonary reaction to the chemo they gave her to cure it.  

Her writing group, who had been working with her manuscript more than a half dozen years worked with Cheryl’s literary executor Sarah Schulman to polish the book as much they could. Sarah arranged for Topside to publish it. Cheryl’s other friends jumped in with help editing and promoting the book. Her community, her Awesome Place, showed just how awesome they are.

Thus, at the book release in October, Anne Elliott, a member of the writers’ group that put the manuscript together,a performer and a writer who had known Cheryl for almost two decades, read from her favorite part of the book,  and addressed the work they did with it: “Well we didn’t do that much to it. It was substantially done. She was just afraid to hit send.”

It’s true. The situation was slightly more complicated than that, because humans are pretty complicated (dead ones especially so, since you can’t chat with them to figure out what they’re thinking) but Anne had a rather poetic knife to cut through to the sad truth: Cheryl had been afraid to hit send.

There were good reasons Cheryl was afraid to hit send. She had been through some shit, both personally and in her career, major setbacks, artist on artist cruelty, rejection, bad relationships, losing a day job she had for a decade to a 23 year old blonde with big boobs and no qualifications. It’s possible (but not likely) that she was afraid of her family’s reaction. I know she was worried about how publishing a book about her worst years of drinking and drugging might effect her ability to make a living. And also, she damn sure didn’t think she would die. At least not yet.

I know this because as she was in the ICU, struggling to breathe, she rolled her eyes in the way that only Cheryl could and said “when I thought about dying young I always pictured something much more glamorous. If you would have asked me if I thought I would go this way,” she gestured to the machines of the hospital, “or get attacked by a pack of wild dogs, I definitely would have said the wild dogs.”

My life has been such that I’ve watched a fair number of people die. Close up and personal. It makes me a great party guest. And although it’s infrequent that a dying person’s last words are Lifetime TV worthy (seems to be me it’s always something like to be “cheese is the new pig” or something else nonsensical addled by medication and pain) I have to say that almost everyone I’ve been with has echoed this feeling of mild surprise.

Well, I gonna fuck up the ending for you.  

SURPRISE!

You are going to die.

Probably not this year. Maybe not this decade. There’s a very good chance it won’t be from a weird reaction to bad medicine that’s supposed to save your life. But you are definitely definitely without a doubt I can guarantee you, going to die.

And when you die, and when I die, every reason we had for not hitting send, for not putting our most authentic work out there in the world, all our fear of rejection, all our fear of being misunderstood, all that legitimate stuff, is going to be bullshit. And even if you have great friends like Cheryl had, and they manage to hit send for you, guess what, you’re still going to miss your own book release party on account of being dead.

It’s absurd that I’m slipping into lecturing mode here, since I’ve been living with the “hit send before you die reality” for a few years now but still in the last few months needed outside encouragement to practicing what I’m preaching. I am an almost middle-aged stand up comic who has lost two partners in five years to cancer, both at age 38, both after horrible suffering. I also have been very involved in Haiti earthquake recovery, both in Haiti after the quake, and with old family friends who now live here but lost a ton of family members, and a fair amount of limbs on January 12, 2010. Musing about death, dying and trauma is like making small talk for me.

So this is what my comedy is about. Not completely, but substantially. And when I finished my last CD, Why Is The Fat One Always Angry, which includes some really hilarious pieces like “Fun and Games at Widow Camp” and “I’m Here, I’m Queer, the Tubal Ligation Didn’t Work” I found all sorts of reasons to not hit send. The files weren’t good enough quality. It had been too much time between recording and the release. Something in there might hurt one of my dead girlfriend’s feelings. But the truth was, I was afraid to hit send. I was afraid of what would come back to me. People become comics because they want (or maybe even need) to make people laugh. I was worried the CD was too tragic to be comic.

Some friends encouraged me to put the CD up as a pay what you can on my website (you can still listen to most of it for free right hereI thought it would helpful, at least, for a few people. Instead, the feedback I’ve gotten from multiple sources has been incredible. One local comic who suffered a devastating loss when his best comedy buddy of many years died this past summer said he downloaded the CD, listened to it in the dark and laughed and cried until he felt like he could get up and face the world again.

As an artist, that’s almost a cliché. I’d have to be an asshole to complain about great feedback like that. So that’s my New Year’s slogan, I guess. Polish that shit up, make it the best I can, and just hit send.

Because when my friends are scattering my ashes in front of the stone lion on the 42nd Street New York Public Library and trying to figure out whether anyone really wants my collection of black tee shirts or whether they should probably just recycle them for scrap, my fears of being the funny person obsessed with serious things won’t matter.

What will matter is if I hit send.

POSTSCRIPT SUMMER 2017

I wrote that a year after Cheryl died. A few things have happened since then. I have a different apartment, new room-mates, an awesome day job,  some limited queer community stand up success, a new niche book or two. I’m even dating someone new and awesome (no cancer history. promise) which takes its own kind of joyful courage.

But recently a fellow queer comic took me out for drinks and challenged me “You’re just doing the same things over and over, you’re not stretching yourself. You can do more than you’re doing. It’s 2017, don’t be so afraid of mainstream auditions. Start reaching higher. You’re playing so small.”

Oh damn. Apparently, it’s not enough to hit send. 

You have to keep on hitting send.