Friday, July 30, 2010

Disability Carnival #68 and Evidence

Looks like it is time for this month's Disability Carnival, where a number of disability bloggers write about a common theme, and we all get to enjoy the results! This month's theme is evidence, and you can find it here.

I may try to write something for the next one, if I have the spoons and the confidence. I do not know if there are any pre-requisites for doing so, I will find out.

Deeply Problematic is a blog I have been following for at least a few weeks, and spent some time going through the archives until I ran out of spoons.

I find this theme very interesting, because the first thing that comes to mind, for me, is that a lot of people seem to want evidence of my disability. Since lupus is almost invisible (except the damn mask -- but that only means something to people in-the-know, as mine is pretty mild), I am often asked exactly why I use a cane or a wheelchair, or why I am sick or fatigued so often.

I suppose I could show someone my handicap parking tag, or my receipt for it, or my blood test results, but I will be damned if I will do that. Medical professionals can look it up themselves, and the general public can kiss my ass if they think I am lying.

You may think that only assholes does this sort of thing, but even well-meaning, usually polite people will ask about my cane or my chair, and react as if I am the one being rude by saying "It is a long story," and leaving it at that. At a recent convention, I had to say this three times to one person, and eventually had to end it with a polite version of "No, I do not want to talk about it with you." What the hell?

I only let people I really trust see me at home anymore. I think watching me get around just fine at home and need an aid out and about just confuses people more. At home, the furniture is situated so that there is never more than 2-3 steps where no support from the furniture is available, and I know how to fall if I do fall (which I am unwilling to risk in public). Also, I can choose when to stand or sit or lay down. Outside of my home, I do not necessarily even know if seating is available.

Oddly enough, my cane gets more comments than my chair does. I don't mind the folks that think it is neat, because, well, it is. It is a really nice clear Lucite piece. I bought it because it was about the same price as other canes, and my hope was, since it was transparent, that people would not even see it most of the time. That kind of backfired. People notice it a lot! I do not mind the folks that like it, I mind the folks that actually ask me if I need it, or just carry it to be cool. Yes, it does really happen. 

Parking lots drive me nuts, because I feel like I should use my cane, even on a good day or a short trip, so people do not resent me when I get out of the car looking "healthy." Apparently there is some stereotype regarding how I should appear, and I do not fit it. Yeah, I know, "but you don't look sick!"

I went through that phase where I wished I had a missing limb, or a very visible lump, just so people did not have to ask. Eventually I grew out of that to where I am now, which is being belligerent about them believing that they need to know or have a right to ask. I do not know if there is a phase that comes after this one.

In My Inbox: Ball Memorial Hospital

Indiana Equality mailed this out this morning:

A transgender woman and her partner and child are alleged to have been inhumanely treated, dehumanized and disrespected while making a visit to the emergency center of Ball Memorial Hospital in Muncie.

On July 18, 2010 the transgender citizen was coughing up a large volume of blood and was taken to the hospital by her life partner.  Despite the fact that the intake personnel were shown the individual's Indiana state identification which had her female marker in clear print, she was entered into the hospital's system as a male.

The staff allegedly ridiculed the transgender person, loudly referring to her as "IT". Her life partner was apparently asked by individual staff members, with raised voices, if she was a "He-She".  The patient also claims that she was quizzed about her length of time as a "Transvestite" when she clearly identified herself verbally and through official documents as a Transgender Female.

"It appears that a grave injustice may have been perpetrated against a transgender citizen of Indiana, as well as to her life partner," stated Vivian Benge, President of the Indiana Transgender Rights Advocacy Alliance.
Ms. Benge continued "This situation is particularly discomfiting as Ball Memorial is the hospital where Ball State University students go for emergency treatment.  There are a number of transgender BSU students, as well as other minority students, and they should not have to fear humiliation and refusal of medical care in the emergency room."

The transgender woman is suspected to have a lung condition that may be the cause of mass bleeding and oral expulsion of blood.  Yet, according to the individual, Ball Memorial Hospital refused to provide treatment, with the accompanying statement to the effect of "we do not know how to treat someone like her".  This happened after a long wait to be seen by a physician.
As leaders and advocates for the protection of transgender civil rights, Indiana Transgender Rights Advocacy Alliance and Indiana Equality urge Ball Memorial Hospital to conduct a thorough investigation of these allegations.

"If the events are proven to be true, we call upon Ball Memorial Hospital to take appropriate actions with the hospital employees involved and to institute policies, procedures and staff training that will ensure that such discriminatory actions are not again perpetrated, " stated Jon Keep, President of Indiana Equality.

Click here for a copy of the letter by Indiana Transgender Rights Advocacy Alliance and Indiana Equality to Ball Memorial Hospital.

The Indiana Transgender Rights Advocacy Alliance (INTRAA) is a statewide advocacy organization working to create a society that values and protects freedom of gender expression and the right to gender self-determination for all. For more information about INTRAA, please visit the organization's website at

Organized in 2003, Indiana Equality's mission is to end sexual orientation and gender identity discrimination in Indiana.  For more information about Indiana Equality, please visit the organization's website at or call (888) 567-0750.

Thursday, July 29, 2010

National Association of Free Clinics

I found out about the National Association of Free Clinics via MSNBC's Countdown and have stayed updated via the show and the NAFC's web page. The upcoming free clinics are listed below:

August 4th, 2010 -- Washington D.C. -- one day clinic
August 31st - September 1st -- New Orleans, LA -- two day clinic

Please see the NAFC's web page to either donate, volunteer, or set up an appointment to be seen at these clinics.

Wallet Card

Let's talk about something practical and useful. I believe that everyone, especially the chronically ill, should carry a wallet card. This card should have a condensed version of all your current medical data.  Sometimes you can pick up blank ones at doctor's offices, and some pharmacies offer them, but you can always make your own using a blank business card, or a piece of paper folded up to wallet size.

Off the top of my head, here are some of the things you should have on your card. If you have additions or changes to suggest, please leave them in the comments! Note: I did not include insurance information as I keep mine between my ID and my insurance card.
  • Name,
  • Address,
  • Phone Number,
  • Emergency contact name and numbers,
  • Current doctors' names and phone numbers (include specialists you currently see),
  • Allergies,
  • Medications you take and dosages -- both Rx and OTC,  
  • Equipment you use and implants you have, 
  • Any tools you may need to communicate, and
  • Conditions -- both diagnosed and suspected.
Take a moment to think of anything else a medical professional may need to know if you are in their care and unable to answer questions.  Whether you are in "good health" or chronically ill, you could end up in a situation where a simple effort like this could save your life.

Again, you can make your own if you want, ask at your doctors' offices or pharmacy, or you can look online. I found a service that offers both free cards and ones you can buy here. This site has you fill out the information and puts it in a card you can print out.

Additional solid advice on emergency identification can be found here. I generated over five million search results on Google using "medical emergency card."

Having a card like this is not only handy in emergencies, but also useful when you are filling out the dreaded new patient forms at an unfamiliar doctor's office. It will not keep you from needing to go over the information at, say, an emergency room visit, as they will sometimes discuss it with you anyway to see how you are doing cognitively.

Monday, July 26, 2010

Awkward Moments, 1

I have decided to occasionally get very personal and post stories of various awkwardness that I have experienced that are (at least tangentially) related to my disability.

Recently three of us went out to an after-hours party at a convention. The convention was held in a hotel, and most of it was fairly accessible. The rooms in which the party was held was less so. For example -- we had to pull the wheelchair outside because of the lip between the room and the outside concrete patio.

So, enough with the details. At one point, a older gentleman with a kind of a creepy vibe stood next to me and patted me on the shoulder. As he did so, he repeatedly said something about his mom using a wheelchair due to polio. I was very uncomfortable. I am not a touchy-feely person, and I do not think that my use of a wheelchair is an open invitation for people to lay hands on me. So when he turned away for a moment, I backed the chair up against the wall so it would be very difficult to reach my shoulder. I could not go get someone in charge to have a talk with him because of the patio/door lip. He wandered off shortly after, and my husband had a talk with the gentleman once I told him what happened.

Queer Crips

Get to know a queer crip

Via a tweet by sesmithwrites retweeting mediadisdat. Sorry, I could not find a way to get a url for an individual tweet (I have seen it done and I will figure it out!).

The intersection of LGBTQIA (did I get that right -- it keeps changing to be more inclusive, but I fear I will botch it) and disability hits so very close to home, and it makes me feel good to see folks writing about it.

Often, it seems that while a marginalized group seeks equal rights and access, sometimes other marginalized groups within that group get set aside. Keep in mind, I speak simply of my experience and do not mean to paint all such groups with the same brush.

Note: while I would not call someone either queer or crip, I support a person's choice to self-identify that way.


It has just been brought to my attention that some web browser ad-blocking software will block my "Search This Blog" and Google News feed. I am not quite sure what to do to remedy that, but I extend my apologies.

Advice on this issue would be appreciated.


Amazing success fueled by act of discrimination

(Thanks to D for sending me this link.)

I read this story on CNN today, and thought it would be good to share it. I was, of course, appalled by the people that would not help Talbot right after his accident -- and then appalled by some of the treatment he received once he started navigating his world in a wheelchair.

The a number of the comments underneath the story were even more appalling. Why on earth do people with visible disabilities make others so vitriolic? I am always torn on the answer. Is it because we remind them of their own frailty? Is it due to the perception that access is a zero-sum game, and if society makes so-called "special accommodations" then others are somehow being left out?

Disabilities debate rages 20 years later

Comments here confused me too. Why must someone have a visible disability to use a handicapped parking spot? I was very hesitant to get my parking tag because I do not use my wheelchair or cane every day, but I am challenged by fatigue and pain every single day. A long walk through a parking lot can very well mean the difference between being able to go out at all or stay home. My tag is between me and the BMV, and my qualifications for that tag are between me and my doctor. I keep the receipt for my tag in my wallet in case I ever have to prove to some authority figure that the tag is actually mine.

I think the ADA needs significant improvement -- it was a hell of a good start.

Sunday, July 25, 2010

Links and Advice

Here is the inevitable post where I ask for good links to visit. I will be going through the ones I have this week, and will post what I have that will be a good resource here. However, I do not lay claim to knowing the whole internet, and would be grateful for some suggestions for the blogroll.

Asking about this reminded me that I am a big ol' newbie at this medical/disability/able-ism blog thing, so if you have any pearls of wisdom, I would welcome them. Anything you have found invaluable, or wish you knew when you were starting out, or go-to ideas. Policy ideas you use/have used for similar sites would be great, as I have the barest outline of such so far.

Saturday, July 24, 2010

Great Link!

Second Shift for the Sick is a blog post I read tonight, and just wanted to jump up and down yelling, "This! This! THIS!" You know, without all the actual jumping or yelling.

The post is a great description of just how tiring it is to be chronically ill. How tough it is just to get up and be on some days.

I am so tired of worrying if I am making other people uncomfortable just because I am sick. Some days I understand that I remind other people of their frailty, their mortality. Other days I just want to tell them to eat it.

I will write more tomorrow. I think I am starting to get a feel for this blog.

Reading Doctor's Notes

What the Doctors Is Really Thinking

I read this article with a lot of interest. The OpenNotes project is a great idea, and I hope to see it implemented globally.The piece is well written, with attention paid to both the benefits and downsides.

I know that when I read my records, I usually feel both edified and intimidated. I spend a lot of time looking up acronyms and how tests results are interpreted. The time and effort that it takes to understand those notes, however, also increases what I get out of subsequent visits: I am better able to articulate my questions and better able to understand the answers.

I see a lot of benefits here. Often, it seems that a lot of information can be tossed about during an office visit, and even though I take notes and ask questions, it is still fairly easy to miss something important. Also, if you were given a prescription months ago, and are just now trying to remember if it is okay to enjoy a glass of wine you can easily check. If your doctor told you to come see her again in six months, you can confirm when you should next schedule. This also eliminates a lot of hassle for everyone when you need a copy of your records -- you can decide exactly what you need and print it out.

Regarding the trouble of the way doctors take notes, I think the best solution would be to have a database of terminology and whatnot, and if a doctor writes "SOB" in his notes, the system itself could automatically hotlink it to another page, or a pop-up window that indicates that this acronym usually mean "shortness of breath."


I have thought long and hard about what it is, exactly, that I want to do with Patient C.
  • I want to give solid advice for navigating the medical world, to lend a hand to folks that are going through what I went through for a few years, and still deal with on occasion.
  • I want to help spread news and information about disability, both as an informational service and to help negate that lonely feeling that often accompanies chronic illness and disability.
  • I also want to give news and commentary on the intersection of health with class, race, gender and other social justice issues.
  • Occasionally, I may post something random (interesting, cute, infuriating, etc...) that I ran into and really want to discuss -- you have been warned!
Sometimes, things may get really personal. Health, and the issues surrounding it, can sometimes be intensely personal. I know that some folks may believe that I am giving too much focus to the medicalization of disability and of folks that are disabled, but I want to make that part of being disabled a little easier to navigate.

After a few false starts, I am ready to commit to updating this blog on at least a weekly basis.

Comment Policy

This is my first attempt at a comments policy, so if you have useful suggestions, please post them below.

While this may not need to be said, I will state it here: all decisions will be based on my perceptions and judgment.

Summary/TL;DR: Do not be an asshole.

  • Comments are moderated: at this time, all comments are moderated. I am new to writing a blog like this, with a focus on advice and social justice, so this is subject to change later. I will do my best to moderate comment queues as quickly as possible, depending on spoons.
  • Be polite: the world is rough and tumble enough as it is. This is meant to be a place for polite discourse. Feel free to question a person's ideas, but avoid personal attacks.
  • Intolerance: Isms will not be tolerated. This includes, but is not limited to the following: able-ism, class-ism, racism, size-ism, sexism. Trans-phobia and homophobia will be not be allowed. While I have had an interest in social justice since I was a teen, I am relatively new to the language of the movement, and may occasionally make mistakes in both my post and in approving comments. It is okay to point out those mistakes, just know that I am doing my best and am always working to improve.
  • Trolling: No trolling. Yes, trolling will be defined by me.
So relax, speak your mind, share ideas and opinions -- all I ask is that we try to treat each other with some tolerance.

So, that seems to be a good start, although I expect to make additions, changes, and whatnot as time goes on.