Where privilege, power, money, and influence fall off

1923 broken down car with wheel off
Sometimes, a wheel just comes off – I just wish I hadn’t “driven the car” longer than I had to

So, my life is morphing, and that’s okay. It’s good, actually. It’s a long time coming — a wake-up call, reminding me where I really fit in the grand scheme of things, and prompting me to “buck up” and take matters into my own hands.

Not be dependent on a system that’s inherently hostile to me, by design.

Take responsibility for my own situation, and do everything I can to advance my own cause, as well as support others who need similar help. That’s what this blog is all about — putting my own personal quest / journey out there, in hopes that others might just benefit from it as well.

Brain injury is woefully misunderstood. Brain injury rehab resources are irregular and over-hyped and work differently for many different kinds of people. Plus, they can be expensive and/or inaccessible to folks who aren’t rolling in money. So, this blog is intended to fill certain gaps that exist in the world — by design.

It’s been said several times by people on this blog (who have a history of involvement in the brain injury rehab field), that brain injury can be a “cash cow industry” that’s seen its share of fraud and exploitation. I can totally see how that can be — you’ve got patients who are impaired to various degrees (some of them severely), who can’t advocate for themselves. You’ve got friends and family and loved ones who know precious little about brain injury, what to expect, how to handle it, etc. And you’ve got an insurance infrastructure that will pay for some things, but not for others. Considering how vulnerable brain injury survivors are, it’s the perfect industry to get into, if you have no morals or ethics… or fear of burning in eternal hellfire and brimstone.

Even if you’re a good person with the best of intentions, keeping to the straight and narrow must be awfully difficult in that industry. My first neuropsych (NP) bucked the system for years, providing services to me at a discounted rate and submitting insurance claims with the billing codes that worked. The later NP apparently never mastered that skill. Either that, or they didn’t actually want to. They said they spent a lot of time fighting with the insurance companies, but it seems to me they didn’t explore every conceivable loophole available.

I just can’t get free of the belief that, if they’d wanted to find a way to help me at a sustainable level, they could have found it. Find a way or make a way. The fact that they didn’t, and then they charged me more to make up the difference… maybe that’s standard practice in the NP field, but that won’t fly with me.

So, the long and short of it is that here I am, on the business end of the rehab cattle prod — like so many others, removed from regular support because it’s overpriced, and I’m not paying market prices. Assigning market prices to services to vulnerable people seems… odd to me, anyway. Hell, having healthcare be market-driven strikes me as a complete departure from the way healthcare should be handled, anyway. Hospitals were often started by religious groups, and the concept of healthcare was expanded in the Roman Empire after Christianity became the official religion. So, there’s historically been a religious/spiritual element to healthcare.

Historically, that is. Over the past 50 years, perhaps because of the decline in religious fervor, it’s become more of a commodity. And healthcare, in my opinion, can be about the most predatory kind of market I can think of.

I mean, who makes their money off vulnerable people who have nowhere else to turn? Seriously… who does that?

Well, anyway, that’s pretty much how the world works, these days. Of course, there are healthcare providers who will step outside the standard-issue money-making paradigm and act as true healers. But those people can be few and far between. And I think it must be easy for young clinicians to fall into the dominant mindset of charging as much as possible for services rendered. Treating healthcare like a provider-consumer arrangement, where everybody is expected to be a “good consumer”.

That logic makes no sense to me at all. A few years ago, I wrote a post I am a shitty healthcare consumer, and it still holds true. I will never, ever be comfortable with the paradigm that reduces everyone in the healthcare equation to providers and consumers, as though sick and vulnerable people are actually in decent enough shape to “fulfill their role” and the power dynamics, privilege, and influence were equal.

That’s what that dynamic seems to expect — that doctors and patients are on equal footing. But we’re not. Not even close. They have the power, the knowledge, the influence, the ability to commit us against our will or prescribe treatments that no one else can. They hold the power over our lives and deaths, at times. They hold the proverbial keys to access to information and resources (diagnosis, meds and rehab, for example), which only they can wield in the public arena.

So, expecting patients to be “good consumers” is a stretch. It’s a stretch invented by people who don’t seem anywhere near aware of the inequities of power, influence, control, and knowledge. With great power comes great responsibility. Somewhere, things are falling down.

In my case, it fell down big-time.

My most recent NP knows:

  • I am the sole provider for my household
  • I have a dependent spouse who is unable to work regularly and is becoming increasingly disabled
  • I am being paid 20% less than originally promised, because my employer got acquired, and the new overlords don’t feel like paying out the bonuses I earned (which were included as part of my overall compensation)
  • I have specific challenges which make my day-to-day more difficult than they “should” be for someone with my base level of intelligence
  • I have no other reliable source of day-to-day support
  • Other people who try to help me, don’t have the level of expertise to understand the nature of my difficulties, so they mistake my neurological problems for psychological ones and try to treat me for that
  • I have to leave work early and drive a couple of extra hours each Monday to get to my sessions (which is a real hardship for me at times)
  • I have almost no retirement savings, thanks to the organizational problems after my mTBI in 2004
  • I have many house repairs to make, which will drain what savings I’ve managed to put aside, over the past 3 years. By the time the essential repairs are made, I will have no “safety net” left.

None of these issues are a problem for the NP. They are married to a fully employed spouse, they are on staff at one of the top hospitals in the nation. They teach at a big-ass university that’s one of the top schools on the planet. They have two offices in the same medical building. They live within a few miles of their office. They have the time and the money to take two weeks off to take their family to Paris and other points around the world. They have a PhD, and they present at professional conferences, as well as offer public education sessions. They’re in “thick” with some of the leaders in their field, being trained by some of the top docs. They’ve got a full roster of patients — a waiting list, in fact. And they’ve gotten rid of all their former clients who were on the type of insurance I have, because the insurance company won’t pay them their rate.

So, basically, they’re set.

And I would think, comparing their situation to mine, that they’d at least be able to cut me some slack. If I were in their shoes, I’d make an exception, because it can be done. One client out of tens doesn’t pay full price… big whoop. The difference is easily made up. I know, because I myself have been in many situations where I ran events where some people could pay full price, while others had to get a break. That’s just how things work in the world where I live — some have more money to contribute, while others have less money but other talents to add. You work a deal with people. You make the most of what they have, and if money isn’t one of those things, you find another way for them to contribute.

In this world, inequity abounds. What we do with our privilege and power says a lot about us as human beings. And if you apply the same measures indiscriminately across the board, expecting everyone to operate on your level and chip in the exact same amount of money as the next person, that’s not just unrealistic and unfair, to my mind, it’s unethical. It’s kind of shitty, actually.

So, yeah, I’m not bothering with that NP anymore. I’ve already deleted their contact details from my phone.

Maybe they meant to be shitty, maybe they didn’t. Maybe they’re just overwhelmed by their responsibilities.  Whatever. I don’t know what goes on the hearts and minds of others. But I do know that in the patient-doc dynamic, they were the one with the power, and they chose to use their power to disenfranchise me.

Screw that.

Screw them.

I’m just sorry I didn’t see this sooner.

I could have saved myself a lot of money, if I’d just moved on without giving them the benefit of the doubt.




Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

6 thoughts on “Where privilege, power, money, and influence fall off”

  1. Have you talked to them to try and negotiate a different fee? Have you explained your situation as you have hear in terms of your financial position?

    Liked by 1 person

  2. I’ve tried to discuss money with them, but they would never give me a straight answer in terms of billing… until I got the bill. To be honest, my trust is pretty much shot with this person. I don’t think I could work with them now, even if they did give me a rate that actually worked for me. They know my situation. But they still went ahead and billed me. So, that tells me something.

    Like, I need to move on.

    If this is a “rookie mistake” — and it may be — that’s fine. But I can’t be their “crash test dummy” while they’re getting up to speed. It’s just too disruptive.


  3. Very well put, concise and meaningful thoughts out there. I was taken advantage of by so many health advocates, case managers, and treatment providers. Even my private disability insurance policy found a loophole to keep every dime owed by contingent occurrences within our contract. Within a week or two, I lost my job once boss noticed I couldn’t figure out how to work a stapler. I’d had that high paying job for just two months after I spent seven years of graduate school and now default on hundreds of thousands of dollars in debt to hospitals , NP, and the emotional debt taken when my fiancé put our engagement on hold while she quit her job to take full time care of me. it still took 7 months before I was given NP testing and have since spent over a year in brain injury rehab day programs, residential skilled nursing facilities, and finally will transition to outpatient this summer.
    Your point regarding healthcare systems stands true; it was once a research specialty of mine. It is true that our system attempts to fairly balance healthcare on a triangle of healthcare’s essential measures of success. Cost, Quality of care, and patient access to the best treatments form the triangular approach to balancing patients; no triangle lands on all sides. Access is a major issue for some, but sometimes not cost. Quality care is virtually never granted robustly to us “risks in an insurance member pool.” balance a triangle and so in every individual circumstance one of those three things is going to be completely left out or diminished. At least hospitals and healthcare did emerge as compassionate places to die in nineteenth century America. Then the early 1900’s saw international alliance and negotiation chips in drug epidemics, that by this time technology had been far too efficient at maximizing health risk from substances. Political rhetoric and some visible understanding of the persons living healthless habits could be turned helpless. Suddenly the moral panic of drugs changed their historical status as biological agents used in crude methods or taken raw now could be distilled, extracted, manufactured and shipped abroad without cost or consumer concerns.
    It was this social fabric that willingly turned authority and control of administration for medical uses only. Regulations built untouchable industries with federal drug control enforcement laws that were required to fund yet never find how harm reduction and healthcare could aid the cause. The now very powerful , immunitized institutions like American Medical Association fought to keep their profession successful and stable. Insurance became merged with wage in the ’50s tax code revision. Here the real enemy emerges. For profit insurance companies.
    the medical system expanded further to cause even benign drugs which now, even benign drugs costing two cents are billed for hundreds. Every other system of healthcare in the so-called civilized world despises for profit insurance companies. it is the root of all evil, and our inequitable healthcare system remains triangular because Obamacare’s main mission to eliminate insurance profits was cut to permit the bill to pass. Insurance companies lobbied with such skill level and vigor to keep the system of profiteering within the American healthcare system, and prevailed. As an example only 2% of the total amount of dollars spent on the privatized, national or “socialized” insurance carriers in our country -Medicare and Medi-Caid for example – spend 98 cents out of every government dollar actually providing services. only 2% is administrative costs. However, a for profit insurance company – say, Anthem BCBS – spends 20% of your premium dollars on the actual treatment of patients. 20 cents out each dollar of you son your private insurance company each month will go towards advertising business and expenses holy on related to population health outcome and entirely based upon maximizing profits.
    So because private for-profit insurance companies may post profits, they spend 10 times more than our national systems like VA snd Medicare. This is fundamental and demonstrates the differing margin of greed to profit that insurance companies won’t let go until forced by law.

    Liked by 1 person

  4. Thanks for sharing all that. Sorry to hear about your hardships – it certainly is NOT and easy path to walk. That’s pretty amazing, all the knowledge you have about this. And it’s really a shame that your injury happened when it did. It’s a shame that it happened at all, but the timing seems pretty terrible.

    I hope you’re finding your way and will continue to move down the road to health and wholeness and healing.

    Thanks again for sharing all that. Really, really interesting.

    Liked by 1 person

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