Tag Archives: disability

Disability & Self Esteem: Advertising

I don’t have a t.v. at home so I don’t actually watch a lot of advertisements, but when I do, there’s one thing I notice: Unlike the rest of my life, advertisements only include people with evident disabilities when they want to make some sort of point.

I’m really bothered by this. I know, I know, it’s advertising. We also don’t get excited about brighter brights in our laundry and aren’t followed around by wind machines when we get new shampoo. It’s certainly not supposed to represent “real life” in any way, because it’s all fantasy to sell you stuff. But part of what advertising sells us is ideas about people. And part of what I think it sells us is that disability is a punishment, a novelty, a metaphor, or a joke.

As we’ve said before, disability never just is.

I think this does immeasurable damage to both our perceptions of ourselves as disabled people, but also people’s perceptions of disability and what it looks like.

Today I’ve pulled up a bunch of US-based advertisements (oh, wait, I added the Quebec advertisement after writing this paragraph – Canada & the US!) that feature people with disabilities. I’m curious about what people’s thoughts are when they watch these. What take-away messages about disability do you get?

Mothers Against Drunk Driving (MADD): Disability as punishment.


The video is a bit grainy, probably meant to invoke “home movie”. It opens with tinkly piano music of sadness and woe. A male singer croons: Together…..

The video opens showing a young man sitting on a bench, reading a book. He’s labelled “Your Best Friend”.

The Singer croons: We’re meant to be….

The young man looks up! There’s a woman! She’s walking up to him, obviously excited to see him. She’s labelled “Your girlfriend.”

They kiss!

The camera pans back to show this scene as viewed through a hospital window. The couple – your best friend and your girlfriend – walk off together hand in hand.

The singer croons: Together! Forever!

The camera continues to pan back to show the back of someone sitting in an electric wheelchair, staring out the window. The hospital room is obviously very bleak. This person is labelled “You”.

The screen goes black, and then: “You have a lot to lose. MADD: Mothers Against Drunk Driving.”

That’s right, folks: Don’t drink and drive because if you do you’ll become a scary scary cripple and your girlfriend will leave you for your best friend and you will die alone and unloved!

[Of course it’s a terrible idea to drink and drive. But I’ve seen hundreds of anti-drunk driving ads, and they really can send the same message without implying ‘Don’t drink & drive because cripples don’t get no love’. It can be done!]

Berlitz: Bait & Switch


Camera is doing a gradual close-up on a man in a wheelchair. Behind him is a park. The music is the tinkly piano of sadness.

Man: Up until two weeks ago I always said “It will never happen to me.” But today, look at me. Listen to me. Now I speak English fluently.

The screen goes black, and then “Berlitz. In just two weeks.”

I really waffled back and forth on this ad. On the one hand: Hey! It’s a person in a wheelchair and they’re not presenting him as a sad story. On the other hand, the whole point is to “trick” you into thinking he is telling his sad story but it turns out Surprise! He’s not. I feel this falls into the trope of “Disability to titillate”. What do you think?

Michael J Fox on Stem Cell Research (US political ad)

[Michal J Fox has visible tremors from Parkinson’s Disease.] As you might know, I care deeply about stem cell research. In Missouri, you can elect Claire McCaskill, who shares my hope for cures. Unfortunately Senator Jim Talent opposes expanding stem cell research. Senator Talent even wanted to criminalize the science that gives us a chance for hope. They say all politics is local but that’s not always the case. What you do in Missouri matters to millions of Americans. Americans like me.

“I’m Claire McCaskill, and I approve this message.”

Pepsi Superbowl Ad: Deaf people tell jokes, who knew?

The entire advertisement is in ASL:

Woman: This commerical was created and performed by EnAble – a network in PepsiCo which supports inclusion, diversity, and the inclusion of persons with different abilities.

Two men are driving slowly down a residential street, looking around and obviously trying to find which house they’re going to.

Passenger: Hey! We’re going to be late. We’re going to miss the kick off.

Driver: Which house is Bob’s?

Passenger: I thought you knew.
Driver: I thought you knew?
Passenger: No I thought you knew!
Driver: I thought you knew!
Passenger: No! I thought you knew!

Driver: Great!

He shrugs and starts honking the horn.

Lights in all the houses start to come on. A dog starts barking. People look out their windows annoyed.

One house stays dark.

Driver: That’s it!

Passenger: Yeah, ya think?

They go up to Bob’s house and push the doorbell. The lights flicker. Bob opens the door. Across the street he catches his neighbour’s eye.

Bob: Sorry.

PepsiCo EnABLE
Creating an inclsive environemnt for people with different abilities.

Quebec Society for Disabled Children: Give children wings!

[An animated young boy walks onto the screen, looking sad.] It’s not always fun being a child.

[He sits down into a drawing of a wheelchair.] Especially when you’re disabled.

[A butterfly flies around him, and he begins to look happier.] Disabled children are just like any other children.

[The butterfly lands on his finger. He looks overjoyed.] When you open your hearts, you give them wings.

[The butterfly carries him up into the sky.] Please, help them spread their wings. Thank you for helping the Quebec Society for Disabled Children.

What are these advertisements saying about people with disabilities? What examples of people with disabilities have you seen outside of drug commercials? And what impact do you think these sorts of advertisements have on our perceptions of ourselves, and each other?

Quoted: Susan Wendell

Feminist organizations have become more aware of the need to make their activities accessible to women who use wheelchairs, women who need written material in alternative formats, and women who need Sign Language translation, but much feminist practice still assumes a consistently energetic, high-functioning body and mind, and certainly not a body and mind that are impaired by illness. Moreover, in their writing and organizing, most feminists still assume that feminists are giving, and not receiving, care, and that all significant contributions to feminist movements happen in meetings, at public events, and in demonstrations on the streets. The accepted image of a good feminist still includes handling paid work and family responsibilities and having plenty of energy left over for political activity in the evenings or on weekends. In these circumstances, women with chronic illnesses are likely to find it difficult to participate in feminist movements or to identify themselves as feminists.

— From “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” (originally published in the Fall 2001 issue of Hypatia)

Recommended Reading for 28 October 2010

Readers beware! Not every link is a guaranteed trip to a safe space, and the commentary is not necessarily the opinions of myself or others here at FWD/Forward, but have been included to provide you with a variety of reading that is possibly relevant to your interests (or perhaps to mine). The comments in the blog posts or mainstream news articles you will find below may or may not be triggering to various -isms, and so I would caution you, gentle readers, to proceed with the greatest of caution as you click through away from this page.

Yahoo! News: Nurse error left man brain-damaged

Mr Merrett was aware of the mistake that had been made before he lost consciousness, unable to speak. He can be heard on the film urgently clicking his tongue as a warning.

Ms Aylward tried to resuscitate him but it took 21 minutes for the machine to be restarted by paramedics, leaving Mr Merrett with serious brain damage. He had been nursed at home since 2002 after a road accident left him paralysed from the neck down.

In a strange land (sent in by reader Deborah Russell): The slow reveal

That’s one of the things I like about this book. It doesn’t try to pretend that illness is easy, that everyone can just take the pills and be happy. Kate de Goldi’s characters cope, but there are costs for each of them too. Above all, there are costs for Francie. She has found a way of living, a way of managing, a way of being… content, even if not happy per se. But there are costs. Fancie is no super-crip. She’s just an ordinary woman, who copes as best she can with the way her life has turned out.

The Living Artist (sent in by Heather Freeman): Withdrawal

I see my doctor once a month for a new prescription, because she won’t give me one with refills. (To be honest, I’m unclear if this is her policy, the hospital’s policy, or state law. My impression is that it’s the hospital.)

Last month the one person in her office who knows how to work the computer was out, so I had to have my husband call in to make my next appointment. By the time he got through to the office (which is incrediblyhard to reach by phone) their next available appointment was 6 weeks after the last one. He pointed out that I would run out of my medication before then, and they said they’d see what they could do. Of course we then heard nothing.

Feminists with FSD (sent in by reader Astrid): In defense of “Dysfunction”

Since I have FSD, I have vested interest in learning more about it – what it is, what treatments are or aren’t available, how it impacts individuals’ lives (if at all,) etc. It’s not just reading though – I’ve talked to and received feedback from women who themselves have FSD in one or more forms. I’m especially interested in how FSD is perceived and what people say about it! It’s meta, and its fascinating. So what are people saying about it? When I read about FSD, I notice a few familiar themes pop up repeatedly…

HealthCanal.com: Controversial Law Improves Care for Serious Mental Illness

Currently 45 states have involuntary outpatient commitment laws, but only a handful are designed with prevention in mind. Kendra’s Law is intended to identify and address at-risk behavior that may trigger the need for hospitalization.

Amid criticism that the law may violate patient rights by mandating treatment, the New York State Office of Mental Health commissioned an independent evaluation of the implementation and effectiveness of the program.

Gentle Readers! Always feel free to send your links for a Recommended Reading to recreading [at] disabledfeminists [dot] com. Be sure to include how you would like to be credited for your great find, and a link to any website you want affiliated with yourself.

Politicians care so much they make their message nonsense

Like a lot of people, I signed up for automatic emails from the various political parties in Canada. Because I live in Nova Scotia, the main federal parties that run here are the Conservative Party, the Green Party, the Liberal Party, and the New Democratic Party (often just the NDP). (If I lived in Quebec, I would also have the option of voting for the Bloc Québécois federally.) I dutifully signed up for all four of these parties, so I could be informed about the issues they think are important.

One thing that seems to be very important: YouTube videos! Each of the parties maintains their own YouTube channel, and they stock these channels with videos. Every week or two, I get another email from a political party that really wants my vote (or at least my money), and they often include links to the YouTube channel, or even embedded video. And every week or two, I respond like clockwork, asking them to please provide captioning and/or transcription of the video.

So far, the response has been silence.

I wonder if the reason for this is simply because there’s the new Auto-Captioning service at YouTube, which attempts to automatically subtitle a video a video. Surely this will provide a good working set of subtitles, right?

Ha ha. Ha ha ha.

In alphabetical order, let me show you what the YouTube auto-captioning displays when I try to watch political messages from my current or potential political representatives:

The Conservative Party of Canada:

An image description appears below

Image: Screen capture of a YouTube video, with subtitles that read “You don’t think that’s a whole group called american this country and you have to decide”

Actual quote: Voice Over: “Adopted Britain as his home. Called America his country.” Ignatieff: “You have to decide….” (This advertisement is discussing Liberal Leader Michael Ignatieff’s past.)

Here is leader of the Green Party, Elizabeth May:

See below for image description

Image: Screen capture of a YouTube video, with subtitles that read “we’re on Friday evening breeze through across Canada will gather”

Actual Quote: Elizabeth May “…Where on Friday evening Greens from across Canada will gather.”

I will totally admit the Green example is not as terrible as the others. The Greens don’t have a lot of advertising at the moment. (Non-Canadians, this is in part because they’ve not got an actual member in the House. I count them as a national party because they run in all 308 Federal ridings, and May participated in the Federal Leadership Debate.)

The Liberal Party of Canada:

Description appears below the image

Image: A screen cap from a YouTube vid. Caption reads “the prime minister’s their lives for stroger’s we have a garden”.

Actual quote: “… The Prime Minister is there to inspire us to do our best, and we have a guy who….”

The New Democrats:

Image description is below.

Image: A YouTube screen capture. The caption reads “costs are skyrocketing so why does is Stephen harper dead”

Actual Quote: “Heating costs are skyrocketing. So why doesn’t Stephen Harper get it?”

This is what I wrote in one of my last emails to my MP about this issue:

I know disability and accessibility are things you care about too, Megan, so I hope that you will pass along my concerns to the NDP Leadership: Transcribing and subtitling/captioning of video and audio content is an accessibility issue. Providing both a transcript and subtitling allows for more Canadians to be able to access the message of the NDP. As well, it shows a commitment to accessibility and to including Canadians who prefer or require transcripts and subtitling, for whatever reason. As this is something I believe the NDP values, it would be helpful for the party, at all levels, to provide transcription and subtitling for all the videos that they produce.

Of course, subtitling your video (and providing a transcript) are not only for people who are d/Deaf or hard-of-hearing. They’re also for people who have audio processing disorders, who have difficulties understanding spoke English, who don’t want to turn up their volume, or even don’t have speakers or headphones on their computer. They’re for people who just want a transcript or subtitling because it makes their lives easier today. (For example, I have an ear infection and subtitles are the order of the day.)

Every political party in Canada “cares” about “the disabled”. They really do. Each one has a little subsection of their website dedicated to explaining how they “care” about “the disabled”.

I think it would be awesome instead of telling me how much they cared, they’d show it. And one way of doing that would be subtitling their ads, so everyone can know what their message is.

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Going Through the Motions

I’ve been in hiding.

I admit it.

I’ve been shoving myself headlong into activities that keep my busy, and exhausted.

Still I always feel
This strange estrangement
Nothing here is real, nothing here is right*

“Wow! Aren’t you Supermom?”

Well, not really. It just keeps me occupied.

Just hoping no one knows
That I’ve been*

But really, I don’t have this kind of energy. To run to all these practices and game and meetings. To keep up with the chores. The volunteer events. To make meals. The group photos for people. Bringing snacks and handing out sports drinks. To pack lunches. The doctor’s appointments.

Going through the motions
Walking through the part

I have drawn it from somewhere. But I don’t always have somewhere from which to draw it. I feel like I have had to, though. Because if I didn’t I would have to think about the things that roll around in my mind.

And I just don’t want to do that.

I was always brave
And kind of righteous
Now I find I’m wavering*

It isn’t a pity party, or a call for anyone to feel sorry for me. I can’t even say it is a moment of clarity where I realize the err of my ways and that I will stop this silliness and start taking better care of myself. It’s a little late for that now that events are in full swing and people are counting on me to keep going somehow.

It’s my coping mechanism… however good or bad it may be. We all have them. Mine may just lead to more crashes, a slightly elevated pain med use (which is still well below my prescribed allowance), and periodic bouts of me crying into my pillow at night because I am too exhausted and in too much pain to sleep.

Will I stay this way forever?
Sleepwalk through my life’s endeavor?*

So I keep going through the motions.

Eventually I have to pay that proverbial piper (that jerk), but it keeps me going, in a sense, for now.

I don’t want to be…

Going through the motions

*“Going Through the Motions”, “From Once More With Feeling”, Buffy the Vampire Slayer, Season 6

Someone Get This Rock Off Of My Chest…

I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.

Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication.  Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.

We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.

These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything  or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?

Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?

How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?

Recommended Reading for 14 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Crazy Mermaid’s Blog: Mental Illness Medication Side Effects

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

Diary of a Goldfish (Thanks, Deborah, for sending this in!): Coming Home Undefeated

But it also helps that I am choosing to live with them now, because it is a sensible and practical thing which I actually want to do, not because I don’t have any other options. And it helps a very great deal, that this situation is not permanent. I think it would be a lot harder without plans for the future.

Deaf Echo: It Gets Better. It Really Does. (Thanks, codeman38, for the link!)

A few hours later, I received an email from some guy named Terrence, who told me he had just finished captioning the clip. I guess I’m a little slow these days, because I made no connection between Terrence and Terry.

That’s right. Terry, Dan Savage’s husband, took time out of his day to transcribe their video clip, figure out the program, and upload the captions so that gay deaf kids could have access.

Because. It. Is. Just. That. Important.

Penelope Friday: Read About Cost to the Poorest  of the Newest Welfare Reforms (Thanks, Rosemary, for the link!)

And explain patiently to me that if a family is earning £44000 then they don’t need child benefit. Even if it is the father who earns the money, and the  mother who may depend on the child benefit to have any money of her own (which yes, is often the case, even these days). When women have been able to use their years of claiming child benefit to count for contributions to National Insurance, and now will presumably lose that benefit alongside the present money.

Disability Scoop: SNL Offers Apologies For Disability Cracks

After repeatedly mocking New York Gov. David Paterson for being blind, “Saturday Night Live” used the governor’s appearance on the show’s season premiere Saturday to make amends.

During the show’s “Weekend Update” segment, the real Paterson made an appearance to take some jabs at Fred Armisen’s impression of him and set the record straight.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?


On Living Without a Diagnosis

“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis.  This article is about why I am finally OK with that.

First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors.  Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy.  Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome.  Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).

I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.”  Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns.  You might get a diagnosis that is wrong.  You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely.  I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me.  I am not advocating giving up hope: I am advocating having realistic expectations about the medical system.  Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable.  Years later, I am basically in the same state of health that I was when I first got sick.

I have reached a place where I am quite comfortable not having a diagnosis.  I’m sure the medical system does not agree with nor support this stance.  Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?

I say about myself that I have chronic pain and illness.  I have a disability.  If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life.  Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand.  People understand things like migraines, like diabetes or anemia.

There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness.  I could perhaps find support groups populated by people with my same illness.  I could perhaps get government disability benefits.  These things are not impossible to get without a diagnosis, but they are harder to find.  There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.

But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity.  Right here are the tools I need to help me live a life with pain and illness.  Here is a supportive community, coping techniques, theory, friends.  A person doesn’t necessarily need a diagnosis to live here.     ?

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