Not Your Cash Cow

By now, most of you have probably heard all about the little girl allegedly kicked out of a KFC due to her scars as a result of a pit bull attack. After KFC pledged $30,000 and other cash donations and offers of free surgeries came pouring in, it turned out that the story was most likely a hoax, perpetrated by the family to raise money to pay for her medical care (as an aside, props to KFC for keeping their monetary pledge).

I will be the first to admit that at first I was angry on that little girl’s behalf because I also have been asked to leave business establishments due to my disability. However, in light of the results from the KFC investigations, I was again angry on her behalf. But this time for how badly she was exploited by those people who were supposed to be looking out for her best interests.

The saddest part in all of this, however, is that this girl’s family has just made it that much harder to believe any future stories that come out about businesses discriminating against people with disabilities: “I call shenanigans! Just like that KFC girl! Obviously running a scam!”

And at some level, I cannot say as I would blame people for saying that. I mean, fool me once, shame on me. Fool me twice…

But those of us with visible disabilities have probably at some time or another been treated just as this little girl’s family claims she was treated. And just because we say something about how we are treated does not mean we are looking to be handed a big payout (or any payout really). We just want to be treated like anybody else.

Now this little girl will have to live with both the physical scars from the attack and the emotional scars from being exploited as little more than a sympathy ploy or a cash cow. She deserves better. Those of us with visible disabilities all do.

 

 

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Open Wide!

This week, I had to get a root canal. What was already going to be an unpleasant procedure took a left turn into Comedy of the Absurd. The endodontist came in, looked at the x-rays of the culprit tooth in question, then turned around to say hello.

And he lit up like a 150-watt bulb: “Oh my! Do you mind if I take some pictures??” As he gestured at my legs.

I must have looked suitably puzzled because he went on to explain that his daughter was finishing up a double residency in dermatology and internal medicine, and she would be very interested in seeing some pictures. He was so enthusiastic that I figured anything that made him that happy would make a better experience for me, so I agreed.

He took some pictures with his cell phone, then set it down on the counter and we got down to business. Just as the novocaine hit, his phone buzzed. It was his daughter, asking questions, which he then relayed to me.

Now by this point, I was laying back in the exam chair, with a plastic frame thing, draped in sterile latex, holding my mouth open. And the dentist was asking me questions that required more than a yes or no answer. The only sound I could make was somewhat akin to that of Frankenstein’s monster, and the entire right side of my mouth was completely numb.

You try answering questions about your medical history under those conditions and see how you do. What ensued was a frantic sort of pantomime on my part, with the dentist and his assistants making guesses as to what my wild gesticulations could possibly mean.

If they guessed correctly, I gave them the thumbs-up, and he then relayed my answers back to his daughter. This back and forth game of charades went on for a good 20 minutes as he drilled out the tooth, and cleaned and filled it. At the end of the process, I had a filled tooth and the dentist was pleased that I was willing to help.

At least it kept me entertained while the dental drill was going.

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On Privilege, Politeness and Not Hiding

Several weeks ago, a friend linked to this Robot Hugs cartoon as a primer on how those with privilege should treat those without. It sparked a rather lively debate, including one person who took great offense at the notion that they should be told to “shut the fuck up” if they are in a position of privilege. They felt that it was better to politely ask them to keep quiet, rather than needing to be so confrontational.

Here’s the problem with that. If somebody is going to question my health status, they have already decided that they have privilege before they even say anything to me because my disability is visible. Which leaves me in the more than a bit awkward position of hiding myself.

Anybody who has even casually read this blog knows how I feel about being forced to hide my disability in order not to offend other people.

If somebody has taken offense to my presence before even saying anything to me, I am left with little option but to tell them to shut the fuck up if they use their outside voice to ask about my health status. And at that point, I have little interest in hiding myself so as not to offend their delicate sensibilities.

Ultimately, I am not responsible for your hurt feelings over my disinterest in sugar-coating the fact that my health status is not fodder for public debate. If you cannot understand that, then yes, you DO need to sit down, shut the fuck up, and pay attention.

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I’m Just Me

We are going to visit friends over Memorial Day Weekend. Our friends with whom we are staying have two young girls. As they have only recently moved to California, we have not met the girls before.

Their mother contacted me today for advice on how to handle the potentially thorny issue of what the girls might ask when they meet me for the first time.

I actually find that most young children are pretty easy to handle in this regard. I have a pretty standard script I run through:

Child: Why does your skin look like that?
Me (with a smile): Well, why is your hair brown/blond/red/black?
Child: I dunno. I guess it’s just me.
Me: Well, my skin is like that. It’s just me.

And then we can proceed to more important matters, such as what the child is going to dress up as for Halloween, or what they did at Disneyland last weekend. And the mortified parent goes from mortified to grateful. I’ve gotten more than one mouthed “Thank you!”

One little girl fished a small, pink, plastic, glittery turtle toy out of her pocket and presented it to me as something she got in a birthday goodie bag at a friend’s party. She told me all about the cake and the balloon clown. When I handed her back the turtle as she and her mother were leaving, she insisted I have it because it matched my hair (I was sporting giant fuchsia streaks in my hair at that time).

I only wish grown-ups were half as understanding as that little girl.

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Of Fakers and Concern Trolls

Last week, I was having pain issues, so used the handicapped parking spot. A guy (we will call him Concern Troll, because he was SO CONCERNED that I might be gaming the system) came up to me as I got out of the car.

Concern Troll: You can’t park there! Only people with handicaps can park there!

Me (reaching back into the car to pull off the handicap placard to show him): You mean, like this?

Concern Troll: But how do I know you aren’t faking it just to get a better spot? I read an article about it online somewhere, that people are getting fake handicapped placards!

Me: Sorry, forgot to wear my Team Faking It jacket today

Concern Troll: Errr…

Me: Well, then I guess you gotta take my word for it.

I don’t necessarily look like I would need a handicapped placard. Most of the time I don’t. But if I am having bad pain flares and my choice is between a handicapped spot or walking some further distance in excruciating pain, I will use the handicapped placard. No, I don’t use it if there is a regular open spot next to the handicapped spot. But there are days when I have no choice.

So this notion that I must be faking my pain because I don’t fit people’s idea of what pain sufferers are supposed to look like just…baffles me. Yes, I have the tattoo, piercings, and anime!hair (currently purple and fuchsia streaks). I am far more likely to be seen in geeky t-shirt, leggings, and my beloved purple, floral, satin brocade Chucks than in business clothing (one of the MANY advantages of working for myself). Does that somehow scream “TOTALLY FAKING THE AGONIZING PAIN FLARES!!!” What should I have worn to alert Concern Troll that I actually had a legitimate need for that placard?

Here’s the thing. The only people who get a legitimate say in whether or not I qualify for a handicapped placard are my doctor and the DMV. Since they seem to have taken my word for it, the fact that Concern Troll thinks otherwise really bothers me less than it might otherwise.

And really, it was *just a parking space.* I was not robbing a bank or kicking puppies. I was simply parking my car. Surely there are bigger issues with which to be concerned than whether or not I can park my car in a handicapped spot?

Pain doesn’t have specific identifying features that make it easy to spot. Neither do I.

 

 

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Not Your Contagion

There are some days when I realize that my anger is somewhat more personal than that of other people angry at the same thing, but that I don’t necessarily expect those who are supposed to be my allies in anger to understand WHY it is so much more personal for me.

To wit: This article in the Los Angeles Times, which has been making the rounds of the Internet. Now, there are very few reasons as to why the rate of measles should have tripled within the span of two weeks, and they all pretty much boil down to people not getting vaccinated or vaccinating their kids. Granted, there is no data correlating the rise in the disease rate to the decrease in vaccination rates for those two weeks (being the health care data geek I am, I would like to see that), but it should not be too far a stretch to draw that conclusion.

I recognize that the whole vaccine debate is rather fraught. I will say that my arguments in favor of vaccinations are based on a pretty thorough understanding of how herd immunity works, combined with enough years working with pharmaceutical companies to know that vaccines are actually dirt cheap. Where pharma DOES turn a huge profit is on drugs to treat the diseases that vaccines prevent. So there is no great conspiracy on the part of pharma to make money off of vaccines at the expense of people’s well-being.

But I digress.

The more relevant datapoint here is that if I was to walk down to the end of my street and throw a brick about half a mile, it would land in Orange County. The other relevant datapoint is that to the untrained eye, my condition can look like measles. If it is a really bad allergy season, I will also have red, watery eyes.

So yes, I live right next door to a county which has seen the rate of measles triple in two weeks. While having a completely non-contagious skin condition that looks like, well, measles.

Are you starting to see the problem here? Because of the current flurry of news stories about the upswing in measles that is just down the street from me, I am now more likely to be side-eyed as one of those measles cases every time I go out in public.

Let me tell you how those conversations usually go:

Concern Troll (at the top of their lungs, so as to all the better draw attention to me): “OMG, WHAT IS THAT THING YOU HAVE THERE??? IS IT CONTAGIOUS???”

Me (in my best professionally polite voice): No.

Concern Troll: “IT SURE LOOKS CONTAGIOUS!!! MAYBE YOU SHOULD HAVE IT CHECKED OUT JUST IN CASE IT IS???”

Me: I said that it is not contagious.

Concern Troll: “WELL I THINK YOU SHOULD HAVE IT CHECKED OUT JUST IN CASE!!! BETTER SAFE THAN SORRY!!!”

Leaving aside for the moment the fact that unless Concern Troll is my health care provider or my health insurance company, federal law says it is *not their business,*  I am now suddenly viewed as a contagion rather than a human being. And of course, with all the recent media hype in my area, the chances of this have just gone up exponentially.

So I will say this again: I am NOT your contagion. If I tell you so, your one and only further course of action is to step off and stop pestering me. If you don’t, I am not above telling you that I lied and actually have Ebola. Before patting you on the hand to reassure you.

 

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It’s…complicated

Further adventures with new health care providers. In addition to the skin thing and the pain thing, I have the eye thing. I have had cataract surgery done on both eyes, and am on record as one of the youngest patients to ever have that done (I was 21 at the time). I also have glaucoma and corneal scarring on the right eye from recurring viral infections following each of my surgeries. Given what I do for a living, I need my eyes working as well as possible for as long as possible (yes, that was a shameless ploy to get you to click on over to my online portfolio).

So today was the day to break in a new eye doctor. I had my previous eye doctor (who had done my most recent eye surgery) fax over all of my records, as well as fill out the medical history questionnaire in detail.

The physician’s assistant scanned over all of my paperwork, looked exasperated, and said “There’s just so much here. Can you briefly summarize your medical history for me?”

Again, I pulled out my best Buddha smile: “It’s…complicated.”

She stared at me for a minute, realized that I had, indeed, summarized everything as briefly as possible, and went back to entering all my data, muttering.

This, once again, is where I have come to realize that the way I approach health care is entirely different from how “uncomplicated” patients do so. I’m not easily summarized into a PowerPoint presentation, with easily digestible take-home points.

Actually, I lied. If I WAS a PowerPoint presentation, I would look something like this. Except there would be about 70 slides of about that level of intricacy.

So no, Cupcake, I am not your usual patient. Please don’t expect me to behave like one just because you want to get me out of the way so you can go home.

 

 

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