Life as an Extreme Sport

Snapshots in Chronic Pain

It’s been two hours. I hurt from sitting up straight without anything supporting my back. My face feels tired from smiling and forced cheer. The paper of the exam table feels like sandpaper against the back of my knees, and I lost feeling in my hands after they asked me to squeeze and press and push and squeeze again, for some indeterminate test of muscle strength, when the problem is my nerves.

My medication history is nil at the moment; it’s been years since I’ve had anything prescribed to control the pain, and they know this. They’ve explained that they also cannot and will not ever prescribe pain medication for me–I’ll have to find a willing primary care physician. That’s deflating; why am I here?

They hand me a cup to piss in on my way out the door. No pain medication, hours of going over my history, and I still have to prove that I’m not on any drugs, just for the pleasure of their company.

The bill, before insurance, is nearly $1000 for the piss test. I’ll have to pay nearly $100 out of pocket.

swirl

The physical therapist wants to see me three times a week. My co-pay is $40 a visit. She talks of curing me in the next few months. I can’t decide what’s funnier: that I can afford $480 a month for physical therapy, that I can leave work early three times a week, or that I can be cured.

She cringes and recoils when she learns where my husband works. If he’s not with me, my physical therapy appointments only last 40 minutes. If he’s there, they always last over an hour.

swirl

I am soaked in a downpour earlier this week, fast-moving thunderstorms that overtake me on the way home. I lose track of the number of times I change temperature environment, going in and out of air conditioned buses and building, first dry and then dripping wet. My skin is now on fire, like I’ve been severely sunburned. But there’s no proof, there’s just the flinching if I am touched, the desperate attempts to find the softest clothes to wear, the effort at hiding my body from any direct air.

It is the middle of summer, but I’m bundled for late fall, arms covered and gloves on. My T3 is so ineffective as to be laughable, and it’s my own fault; opting–no, arguing–for the weakest opioid possible after my experience with the pain management doctors. To reiterate that I’m not drug-seeking, I’m not a junkie, I should not be judged or stigmatized, I am strong and only want the minimal medication possible to stop the pain.

I only want the minimal medication possible to stop the pain.

The pain has not stopped.

Hobby Lobby, Contraception, & the Supreme Court Ruling

The Roberts CourtAs expected, the last case ruled on before the Supreme Court of the United States adjourned until October was the Hobby Lobby/Conestoga case. For those unaware, this case is based on the Affordable Care Act’s contraception mandate, classifying contraceptives as preventive healthcare required under all insurance plans without a co-pay. Hobby Lobby and Conestoga Wood both objected to this, saying that covering some forms of birth control, like the IUD/IUS or Plan B, violated their religious beliefs by requiring them to fund abortive medications.We’re just going to sigh and ignore proper science right now, okay? Because otherwise we’re going to go nowhere but to the nearest hard surface. With our heads.

Unfortunately, SCOTUS ruled for Hobby Lobby/Conestoga, agreeing that the contraception mandate of the Affordable Care Act violates the Religious Freedom Restoration Act.

Now, before we get into the particulars,I am not a lawyer; let’s just get that out of the way up front. let’s go over the generals:

  • NO, SCOTUS did not overturn the contraception mandate.
  • NO, SCOTUS did not rule companies do not have to provide contraception to employees.

This is a limited ruling that does not affect publicly-held corporations, or privately or closely-held corporations that do not also have sincere religious beliefs.

So what did happen? SCOTUS ruled that closely-held corporations owned by people with sincere religious beliefs do not have to provide contraception coverage that violates those sincerely-held religious beliefs.

It’s important to note that this is a very, very narrow ruling. In the majority rule, Justice Alito noted that this particular ruling would not give companies room to discriminate; for example, a closely-held corporation owned by folks whose religion finds gay people an abomination would not be allowed to freely discriminate against gay folks. This ruling does not overturn federal protections for suspect or quasi-suspect classes.

…your eyes just glazed over, didn’t they? At the end of this post, you’ll find a treatise on legal vocabulary that might help the above make sense. For now, let me put it into English for you: highly religious families that own large businesses that employ lots of people but don’t share that stock love around are allowed to deny female employees certain types of contraception based on scientifically incorrect notions of what an abortion is, but that’s all they’re allowed to do.

In line with the Citizen’s United ruling that says corporations (are people too) have free speech, this ruling says that a small, small group of companies in the United States are protected under the RFRA, because they have a religion.

In the run-up to this decision, I’ve quipped (repeatedly) that I’ve never seen a corporation in a church before. SCOTUS would reply: when that company is held by five or fewer related family members with shared sincere religious beliefs, if you’ve gone to church with that family, you’ve seen that corporation in church.

In other words, there is no firewall between the religious beliefs of a family and the company that the family runs. (This also would apply to a small group of people who share a sincere religious belief but are not related.)

The reason for this is that the ACA mandate fails the Sherbert Test. Justice Kennedy said that he believed that the option for religiously-affiliated organizations, such as Catholic hospitals, to opt-out of contraception coverage meant that the government could not prove that requiring Hobby Lobby and Conestoga Wood (or other closely-held corporations with sincere religious beliefs) to include contraception coverage in the health policies they contribute to was the least restrictive or burdensome option. In the case of the religiously-affiliated non-profit organizations, women are able to receive contraceptive coverage through separate health policies provided by the federal government at no charge; Justice Kennedy clearly feels that this will be extended to women who work at closely-held corporations with sincere religious beliefs against some contraceptives.

Of course, as SCOTUSblog noted, there are a couple of issues here. The bigger one is whether or not the Department of Health and Human Services has the authority to extend the non-profit contraception exemption to closely-held corporations; I expect we’ll see the Obama Administration clarify this quickly (and most people seem to think that HHS has the authority to do this, including SCOTUS).

The smaller issue is an interesting one. There are some non-profit groups that have argued that even signing a certificate that says they object to providing contraception coverage for their female employees is a violation of the RFRA. Today’s Hobby Lobby/Conestoga ruling seems to imply that SCOTUS does not find the process of certifying beliefs an undue burden under RFRA, which could effectively shut down some 20-odd cases around the country.Emily Bazelon has more about these cases over at Slate.

So in sum, closely-held corporations can express religion and are protected under RFRA as long as it’s a sincerely-held religious belief, but the expression of their religious beliefs does not go so far as to allow discrimination; women employed by these companies should still be able to receive free contraceptive coverage from HHS, like women who work for religious non-profits do; and signing a piece of paper to indicate that your company’s sincerely held religious beliefs is probably not going to be viewed as an undue burden by SCOTUS.

It’s an interesting ruling, and one that I suspect isn’t going to make too many people happy, even while people will incorrectly make absurd statements on what the ruling means.

My personal take is a bit more esoteric: I actually think this Supreme Court is laying the groundwork for a robust federalized healthcare for everyone; clearly, they have established that it is appropriate for the government to offer and require insurance. This shifts another bit of the burden away from companies and towards the federal government, and I suspect that these tiny shifts are what it’s going to take to end up in a system of basic healthcare services provided by the government, with the option for additional insurance offered by companies as hiring incentives or purchased on the market for those interested. The question then becomes: is this intentional by Justice Alito and the other conservatives judges, or is this just happy coincidence as they strive to protect the rights of corporations to be people?

 


Let’s talk about vocabulary, everyone’s favourite subject! In specific, let’s get some definitions for SCOTUS vocabulary and legal language out and down on paper, so that we’re all on the same page.Remember, I am not a lawyer.

Closely-held corporation
A closely-held corporation is a private company owned, directly or indirectly, by a small group of people; the majority of the shares are held by five or fewer people.So sayeth the IRS. These are not publicly traded companies; if a shareholder wants to sell, it must be to an existing shareholder.

Religious Freedom Restoration Act
The RFRA is a 1993 law, signed by Bill Clinton, that prevents laws that substantially burden a person’s free exercise of religion. RFRA applies to the federal government, not state governments. As ACA is also a federal mandate, it is subject to scrutiny under RFRA. The law reinstates the Sherbert Test to see if an individual’s right to free expression of religion has been violated by the government, and mandates that any challenge involving the Free Exercise Clause of the First Amendment be subject to strict scrutiny.

Sherbert Test
This is the test used to determine whether or not the government has violated free expression of religion. For an individual, (and remember, corporations are people, too!), the court must determine:

  • whether the person has a claim involving a sincere religious belief, and
  • whether the government action is a substantial burden on the person’s ability to act on that belief.

If these two elements can be established, the government must then prove that it:

  • is acting in furtherance of a “compelling state interest,” and
  • it has pursued that interest in the manner least restrictive, or least burdensome, to religion.

Strict Scrutiny
This is the most stringent standard of judicial review available, and is generally invoked in situations that either involve suspect classifications or constitutional challenges.

Suspect and Quasi-Suspect Classification
A suspect classification is any group of people that meet criteria suggesting they have been or will be the subject of discrimination. This criteria includes a history of discrimination, hostility, prejudice, and stigma against the group in question, which can be based on stereotypes; immutable or highly visible traits; little to no political power; their distinguishing features do not render the group unable to meaningfully contribute to society.

The Supreme Court recognizes race, national origin, religion and alienage (not being citizen of the United States) as suspect classes. Gender, parentage (legitimacy), and sexual orientation are recognized as quasi-suspect classes.

Sincere religious beliefs
First, let’s be clear: a religious belief does not necessarily mean a belief in God(s). In Welsh v. United State, SCOTUS ruled that “the definition of “religion” is not dependent on a belief in a “Supreme Being.” A person’s beliefs may be deemed “religious beliefs” if those beliefs occupy in the life of that individual a place parallel to that of God in traditional religions.”All referenced court cases in this section are from the document “Selected Cases on Religious Discrimination” prepared by the Office of Legal Counsel for the US EEOC.

In Brown v. Pena, SCOTUS cited three things to determine whether or not a belief is a religious belief:

  1. whether the belief is based on a theory of “man’s nature or his place in the Universe;”
  2. which is not merely a personal preference but has an institutional quality about it; and
  3. which is sincere.

Unique moral preferences thus are not also religious beliefs. (So, for example, being a vegan without also being a member of a religious order whose institutional and accepted religious texts required a vegan diet, would not be a religious belief.)

And finally, how do you determine if said religious belief is sincere? There are multiple cases that discuss what a sincere belief isEEOC. v. Ilona of Hungary, Inc; EEOC v. Union Independiete De La Autoridad De Acueductos y Alcantarillados De Puerto Rico; Hussein v. Waldorf-Astoria; Bailey v. Associated Press; etc. and determined that elements of sincerity for the purpose of religious belief includes following the rules and restrictions of the religion in question, attendance to appropriate worship services, acknowledgment of religious holidays, association with other people of the same religion, and so on.

Suggestions Forward for Science Online (“Where Do We Go From Here?”)

In the wake of Bora Zivkovic’s multiple resignations last week (amazing index here, if you were out on a research cruise and missed it), I was asked if I was going to participate in offering further advice or recommendations to Science Online, since I had been visible and vocal in my impression of what needed to happen. My silence on the blog, save to discuss the difference between con(vention) and con(ference), shouldn’t be read as disinclination to proffer my opinion, but the much more prosaic: holy fuck, I’m tired.

I also wanted to pull back and let other people have the conversation; science online is a community that I am (I would argue marginally) a part of, but the issue with Twitter and blogs is that sometimes the voices that are amplified are the ones that are most present, not the ones with the most thoughtful things to offer.

…okay, fine, and Maryn McKenna beat me to the punch, posting five recommendations for the science communication community to consider moving forward; I unreservedly support her suggestions. I also have a few more.

While I have emailed these suggestions to Karyn Traphagen, (per request), I am also listening them here because the very first suggestion I have is the most important one: transparency.

Right now, an awful lot of trust has been violated, and strange things happen to a community when your ability to trust is shaken. We navigate life based on trust, and we make a lot of decisions based on the very simple feeling of whether or not we trust something, or someone. In a lot of ways, trust is a limiting factor; it helps us make decisions because it automatically narrows down the choices available for us; we can discard many options because we have no trust in the person or the process associated with those options.

When emotional trust is broken,

our options become limitless, and we are paralyzed, not in fear, but in choice. We have no way of narrowing down the potentiality of an event/situation without the ability to trust. But we trust – or not – based on prior events, and to override those prior events that taught us that we cannot believe our instincts is something that can only be done on faith.

Above all else, this is probably the most threatening thing for Science Online right now: broken trust, and the threat of becoming stuck. Right now, the best way I can see towards overcoming broken trust and fear of “what if,” is to continue the very public and transparent discussions.

The rest of my suggestions can be broken down into those that are immediately applicable, and more generalized future changes. The one thing that I think must (yes, back to that word) happen for Science Online 2014 is that some sort of reporting/anti-harassment committee must be set up, easily identified in conference literature, and promoted to all members.

• Anti-harassment Committee – A committee of 5–7 (odd numbered) people should be assembled with the express purpose of being there to handle any harassment going on at the conference. This should be a diverse group of people; half of the group should commit to a single-year term and the other half should commit to a two-year term. Replacing half of the group next year, then, with new people who are also committing to two-year terms, should create an institutional memory, as well as remove concerns of cliquishness. These people should not be (or be related to) any conference organizer or board member.

Essentially, the idea here is for a group of people who are present on Twitter and eMail (likely via a single, shared Twitter and eMail handle) to be easily accessible if someone is feeling harassed. This group should determine whether or not someone is violating the Science Online anti-harassment policy, and have the authority to remove someone from the event, if necessary.

• Offer non-alcoholic socializing options – This has been amply discussed on Twitter, but I wanted to throw my endorsement behind it, as well. Right now, one of the things that blurs the line between convention and conference for Science Online is that the drinking appears officially endorsed. As has already been extensively discussed, clarifying the line between officially endorsed event and “event happening in conjunction with” would be useful. Removing the focus on evening drinking and creating more options would also, at least per Twitter feedback, give more introverted people chances to socialize on their terms.

• Have a buddy system for the opening night social – Partner up new attendees with old hands for the first night mixer, so that the newbies have someone to talk to, show them the rope, and help them get settled in. This is a several hour commitment at most, but would go a long way towards preventing groups of people clumped in corners at a science museum, not knowing anyone (as did happen in 2013). Having someone to go “hey Chad, have you met Allie?” will go a long way in helping newbies integrate, place Twitter handles to faces and names, and have familiar faces around over coffee the next morning. Plus, it’s just nice and helps to build community!

• Have a strong, clear harassment policy, and be willing to enforce it – Signing off on having read the Science Online sexual harassment policy should be required before allowing anyone, old or new, to register for Science Online 2014. While I was inclined to say that sexual harassment training should be mandatory, the reality is, that’s not possible on the scale the conference has grown to. However, resources are readily available online and for free; these should be prominently visible on the Science Online website, and people who are uncertain as to precisely what is harassment is–which is okay, not everyone has been through multiple iterations of harassment training from human resources–should be encouraged to view and take training videos without stigma or shame.

~

The other suggestions I have are likely more long-term, not implementable for Science Online 2014. I still think that they are important to include.

• Decide on the unconference – I’ve heard “it’s an unconference” associated with Science Online, but the reality is, by planning the majority of sessions ahead of time, SciO is not an unconference. Continuing to call it such creates an incorrect image of what people should expect. It’s one of those things that either needs to be fully embraced (which could be interesting) or fully dropped. Because of how planning has worked, and the fact that a small committee makes the choices on what presentations are ultimately available, it seems to me that “unconference” should be dropped for either con(vention) or conf(erence).

• Ditch the size limit – As many people have pointed out, limiting the size of Science Online creates an exclusionary atmosphere. Chad Orzel has had some great things to say about this, from pointing out that random registration times are difficult for those with jobs, families, and other obligations, to noting that because of the prominence Science Online appears to play in helping people get started in online/science communication–an event that helps shape careers–it cannot even have the appearance of being exclusionary. In fact, Orzel said it so well, I’m just going to quote him:

The problem is that #sciox seems to have become an important, even essential meeting for people getting started in online scicomm. If #sciox is going to have that kind of must-go-to-make-it role in community, the bar for inclusiveness has to be much higher. If #sciox is an event that shapes careers, it can’t also be or even appear to be an exclusive party for a select in-group.

I realize that conference centers are booked several years in advance, and a change of size will take time. But as Science Online continues to grow in popularity, and be seen as the place to attend to make connections (and a career!), it will be necessary to make sure that the conference grows proportionally. Not doing so, and making attendance based on a combination of opaque session suggestion acceptance, luck of the draw when registering on the internet, or literal luck of the draw with a lotto, creates different classes of people, and perpetuates the feeling of exclusivity.

Why is the path unclear,
When we know home is near.
Understand we’ll go hand in hand,
But we’ll walk alone in fear. (Tell me)
Tell me where do we go from here.

 


(With thanks to Eva Amsen, David Dobbs, Maryn McKenna, Nicholas Evans, Alice Dreger, Emily Willingham, Rose Eveleth, Karen James, David Shiffman, and oh, about 300 other people I’ve had what feels like almost on-stop Twitter and email discussions with this last week. While many of these people discussed these ideas with me and helped me refine them, if you take issue with anything, that’s my fault, and should be taken up with me.)

Pain Management & Pharma: Yeah, It’s Personal

It’s possible that you’ve heard about the Senate Investigation into pain treatment/control advocacy groups and the makers of narcotic medications; just the announcement of the investigation has had significant effect: The American Pain Foundation immediately dissolved, and the American Journal of Bioethics suddenly realized they had an awful lot of conflicts-of-interest that they had ‘accidentally’ not disclosed. (For a closer look at that, check out William Heisel’s coverage, here and here.)

Today, Deborah Blum posted a link to a 14-years later follow-up of the patients who served as testimonial voices for Perdue Pharma in a video promoting OxyContin (and, according to a doctor who was a paid specialist for Purdue Pharma at the time, to prescribe more opioids period). Of the seven patients, two were addicted to and abusing opioids when they died, a third became addicted, three maintain everything is fine, and the final refused to comment. Not a fantastic track record, especially given what we now know about Perdue Pharma lying about the addictive nature of OxyContin. The company was hit with large fines for their creative promotions and “misbranding” of OxyContin in 2007, but as the above links regarding the extensive financial support of pain management advocacy groups, doctors, and ethicists show, combined with the ProPublic exposé that started the ball rolling, the fines didn’t amount to much discouragement.

The thing is, I realize that a lot of people are outraged about this on the sheer principle of it: the people who are supposed to take care of the patient are making decisions based on money and incentives rather than what’s best for the patient. I share that principled outrage, of course, but for me, it’s also terribly personal.
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A Teacher Wouldn’t Be Fired for Being a Companion

Sex work, I have written, defines the people who do it like no other occupation. Associated with deviance, drug use, mental illness and disease, to be labelled a “prostitute” is to be cast as the lowest of the low. No matter the realities of our experiences, we are thought of as victims and as inherently damaged, either before or as a result of our profession. Worst of all, once a sex worker, always a whore.
-Melissa Petro, Jezebel

And that, right there, in a few simple sentences, sums up the point and power of Inara in the Firefly ‘verse. For all you may disagree with aspects of sex work represented, this comment (and the entire article) highlight just what it was Inara was supposed to flip around. Rather than be the lowest of the low – an attitude still embraced in some parts of the ‘verse and clearly exemplified in Mal – as a whole, Companions were on the top of the social class system a pyramid. (And, in fact, with Nandi, you get to see how Companions themselves maintain social and class structure.)

Inara was not a victim. She didn’t need rescuing, from her choices or her career. There was no societal stigma to her profession, and she certainly would not have been fired from a teaching position for having previously been a Companion.