Tag Archives: accessibility

An open letter to abled people who like to glare at people who use disabled parking spaces

Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!

Dear abled people who like to glare at people who use disabled parking spaces,

Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.

However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.

I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.

Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.

Don’t be one of them.

Sincerely,

Chally

WIN!: Federal Court Orders Canadian Government To Make Websites Accessible To Screen Readers!

I haven’t even had time to process this yet – I just found out when my friend called me to ask if I had heard the news. Donna Jodham has won her case against the Canadian Government – Government websites will now have 15 months to follow their own accessibility guidelines.

Canada must make Web accessible to blind

A federal court ruled Monday the government had denied Jodhan’s equality rights by not providing equal access to government programs online.

“She has been denied equal access to, and benefit from, government information and services provided online to the public on the Internet, and that this constitutes discrimination against her on the basis of her physical disability, namely that she is blind,” Justice Michael Kelen wrote in his ruling.

The government was not living up to its own 2001 accessibility standards, Kelen ruled, and he gave Ottawa 15 months to make its Web sites more accessible.

In a rare move, Kelen said the court would monitor the government’s implementation of online services for the visually impaired to ensure it complies by the deadline.

I am so excited to learn of this! Congratulations, Donna – your hard work is greatly appreciated!

Guest Post: Stuck and tired: How universities are failing disabled students (like me)

Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).

You’re intelligent, personable, and get good grades. It might look like higher education is a given.

But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.

Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.

I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.

Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.

Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.

Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.

The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.

She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.

I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects,  he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.

As I thought I would, I struggled with my schedule.  Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.

But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.

I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.

It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.

This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.

I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.

Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.

The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.

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.

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.

Recommended Reading for October 12, 2010

Darshak Sangavi at Slate: Should you crowdsource your medical problems?

To be sure, many patients with complex or poorly understood medical problems like amyotrophic lateral sclerosis congregate in large virtual communities such as PatientsLikeMe, where they share details of their medical treatments and symptoms with each other—and occasionally even launch their own unregulated and informal drug trials. These communities provide some helpful information and support for many people.

brigid at Feminists With FSD: On the FSD hierarchy and why it hurts all of us

A lot of support groups, both on and off the web do not want to recognize women with conditions such as endo as legitimate cases of fsd. We don’t have vulvodynia, vulvular vestibulitis, or vaginismus so we couldn’t possibly go through the same things as women with those conditions. I’m here to change that misconception.

Michael Janger at Abled Body: Web Content Accessibility Law Needs More Brawn

However, the newly accessible video content is only the tip of the iceberg. The major broadcast and cable networks that are covered under the new law produce about 100,000 hours of video content a year from their TV programs. On YouTube — which is not covered by the new law — almost 13 million hours of video content are uploaded annually, and that number is increasing. Over 99% of this Web-exclusive content is not closed-captioned or video-described, nor will it be required to be, under the new law.

Flash Bistrow at Where’s the Benefit?: DLA and work? Who is confused here?

The government has already said that the new medical test is intended to reduce the number of DLA claimants by 20%. But I am not sure how taking benefit from 1 in 5 people will “reduce dependency” (on what?) and “promote work” – indeed, several of the people quoted in my previous article about DLA would have to stop working if they lost that benefit, because they do not have enough energy or capacity to both care for themselves AND go to work. If the government think that turfing disabled people off DLA will suddenly give them the capacity to work, they are very much mistaken. It will just disable them even further.

Sam Roe and Jared S. Hopkins for the Los Angeles Times and Chicago Tribune: The final hours of Jeremiah Clark (major trigger warning for discussion/descriptions of abuse and neglect)

Jeremiah is among 13 children and young adults at the North Side facility whose deaths have led to state citations since 2000, a Tribune investigation has found. Some of these deaths, records show, might have been prevented had officials at the facility taken basic steps, such as closely monitoring residents and their medical equipment.

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.

Canadians: Participants are needed for a study of cell phone based emergency services.

(via email)

Participants are needed for a study of cell phone based emergency services.

Researchers at the Neil Squire Society are conducting a study to look at how 911 emergency calls and emergency disaster alerts on cellular phones can be made more accessible.

The goal of this project is to get input from actual cell phone users on how the next generation of emergency services should be designed to ensure accessibility before they are released. Your feedback will be used to make industry and government aware of the unique needs of the Blind community.

We are currently looking for people who are blind and currently use cellular phones and would be interested in attending a focus group or completing a brief survey.

Eligible participants will have a choice of attending one of the focus groups being held in locations across Canada or answering questions in a survey. The focus groups will typically last 2 hours and consist of 6 to 8 people. There will be a brief presentation and an open question and answer session.

To learn more about this research and your eligibility, please contact:

Neil Squire Society
EMAIL: research@neilsquire.ca
Toll Free Telephone: 1-877-673-4636
Address: Suite 220 -2250 Boundary Rd.
Burnaby, BC V5M 3Z3

Principal Researcher
Dr. Gary Birch, PhD, P.Eng.
Neil Squire Society
Executive Director and Director of Research & Development

Sadly, I cannot answer any questions for you regarding this study.

Signal Boost: ADA Transportation Webinars

(Via email)

Dear Friends,

The Topic Guides on ADA Transportation, a series of technical assistance documents funded by the Federal Transit Administration (FTA) and developed by DREDF and TranSystems Corporation, will be featured in a series of seven once-a-month webinars, one webinar on each Topic Guide. The webinar series will be coordinated by the DBTAC Great Lakes ADA Center and the DBTAC-Southwest ADA Center in collaboration with Easter Seals Project ACTION.

Registration: Registration is available on-line at www.adaconferences.org.

Funded by FTA to provide technical assistance on transportation to transit agencies, riders, and advocates, the Topic Guides on ADA Transportation bring together the requirements of the Americans with Disabilities Act (ADA) and the Department of Transportation ADA regulations, FTA determinations, and best operational practices for ADA compliance. The Topic Guides also draw information from many other sources. The Topic Guides are available online at http://dredf.org/ADAtg.

Webinar Schedule: Second Tuesday of the month, beginning October 12, 2010 and ending April 12, 2011.

Time:
2 pm to 3:30 pm Eastern Time
1 to 2:30 PM Central Time
12 to 1:30 Mountain Time
11 to 12:30 Pacific Time
10 to 11:30 Alaska Time
(Hawaii time will vary)

Presenter(s): Marilyn Golden, DREDF Policy Analyst and invited guests to be announced

This series of Topic Guide Webinars will include:

1. Equipment Maintenance (October 12)

2. Stop Announcement and Route Identification (November 9)

3. Eligibility for ADA Paratransit (December 14)

4. Telephone Hold Time in ADA Paratransit (January 11)

5. Origin to Destination Service in ADA Paratransit (February 8 )

6. On-Time Performance in ADA Paratransit (March 8 )

7. No-Shows in ADA Paratransit (April 12)

View the Topic Guide Home Page, which offers each Topic Guide in HTML, a PDF download, and a plain text option, at http://dredf.org/ADAtg.

The FTA Office of Civil Rights has also linked to the Topic Guides on ADA Transportation on its ADA website at www.fta.dot.gov/ada under DREDF.

Unfortunately I will be unable to answer any questions about these webinars.

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?

Right?