In our first ever guest post, Ania Bula is here to discuss the idea of comorbidity from a statistical, medical, and social perspective.
CN: Discussion of Statistics in relations to disability, other social issues, sexual assault, and abuse.
There are times when I am talking to someone about my life- about the fact that I’m scared of new proposed laws making it harder for me to survive in Ontario, or about how I’m one particularly unlucky day away from being homeless – when I get the feeling like the person I’m talking to thinks I’m exaggerating. They get this look on their faces that makes it clear they’re just humoring me by not pointing out how ridiculous I’m being. Meanwhile, I’m already minimizing how severe my situation is out of fear of being accused of exaggerating. Worse still, my circumstances are relatively minor compared to that of many of my friends and readers.
When they don’t automatically dismiss what I’m saying as being hyperbole, the people I speak with assume that my case is rare – an exception. A circumstance not worthy of planning against because it’s unlikely to happen again. And yet? Every day I meet someone new in the same type of situation I find myself in. It’s become so textbook, some people look at me as though I’m performing magic when I manage to guess the ridiculous circumstances they find themselves in or repeat almost verbatim what they’ve heard from doctors, therapists, or other people.
It’s a matter of framing, of perspective.
To someone in the mainstream, what is happening to me must be the result of either something I did wrong, or something extremely rare, or impossible. It seems like the probability of all the things going wrong that go wrong happening seem impossible.
What are the chances that every relationship you’ve been in is abusive?
What are the chances that so many of your doctors end up incompetent? That so many doctors end up holding biased opinions?
What are the chances that everyone around you is so terrible? Doesn’t it seem more likely that you are the problem? Statistically speaking that is?
These are the words many of us hear daily – from friends; from family, from therapists, from well-meaning people who become just another of the chorus of voices in our heads that become nearly impossible to drown out.
It has to do with a misunderstanding of statistics, occurrence, and probability.
I see this all the time. For example, recently in an argument over rights relating to intersex people, a commenter kept bringing up the fact that Intersex people make up 2% of the population. Now I have no idea where this statistic came from or its accuracy, and just off the top of my head I can think of several questions regarding how complete that estimate is, however, even just from the point of view of numbers, that percentage doesn’t seem small enough to render a population worthy of ignoring.
Let’s ignore for a moment the argument that no one should be left starving, hurting, or without access to their human rights – 2% is fairly large on the scale of human existence. Out of a population of 6 Billion, that means something like 120 million people – that’s nearly half the population of the United States. That’s 1 in ever 50 people. Have you ever been in a room with more than 50 people? How big was your school? How many people were at the mall today? How many people in your extended family? On your Facebook friends list?
It’s similar with disability-related issues. Although comorbidity is basically a fact of life for most of us, the idea never seems to occur to people who arrange accessibility or disability programs and criteria.
Even doctors seem to forget about it.
I once had a doctor try to tell me I couldn’t have two of the conditions I’ve had managed by doctors for years, including multiple tests tracking the progress of these conditions, because it was a statistical impossibility. It wasn’t possible, he said, that I could have two different types of arthritis. I imagine he would have been completely blown away to know that in fact, I have three if you count the medication-imposed osteoporosis.
The reason he believed this, however, was because he was using the wrong numbers in his calculations. In his mind, the likelihood of my having both conditions used as the input for the variable the likelihood of either of those conditions occurring independently. This seems plausible until you realize that in medicine, it is well known that certain conditions increase the likelihood of other conditions. The conditions don’t develop independently of one another, the occurrence of either one make the occurrence of the other more likely.
Moreover, more intense treatments for chronic conditions can increase the likelihood of certain conditions or even cause them. Certain conditions are more likely to occur again if they’ve occurred once, like pancreatitis, cold sores, etc.
This is true socially as well as medically. Certain situations are more likely to occur in tandem with others – being a racial minority, being disabled, are both more likely to occur along with poverty, for example, in these cases because society imposes poverty as punishment for deviating from what it prejudicially decides “should” be the norm. The occurrence of certain situations is more likely to lead to their repetition such as in the case of sexual assault, where being assaulted once makes it significantly more likely you will be assaulted again.
That’s because trauma changes you and in the same way a disease causes trauma on the body, so does external trauma cause physical changes to the body which create impairments. (But where most people reasonably don’t expect someone who say, lost a leg to a flesh-eating disease, to regrow their missing limb, the same courtesy is not extended to people who have lost the ability to produce sufficient quantities of serotonin and other neurotransmitters.)
There is a quote by Terry Pratchett (which I’ve horribly been misattributing to Hitchhiker’s Guide) that describes this reality perfectly:
“Scientists have calculated that the chances of something so patently absurd actually existing are millions to one. But magicians have calculated that million-to-one chances crop up nine times out of ten.” – Mort
Millions to one chances aren’t rare. They happen every day. Every single person on earth is an example of one. The existence of humans in the form we are in now is one. Everything that exists is an example of one. Our whole reality is the result of millions-to-one chances. Does that mean we should all play the lottery since statistics don’t matter? No. It means that the general likelihood of something occurring is only part of the equation.
The problem, of course, is that the chances of certain things happening to the general population may be one in a million but be 9 out of 10 for people in specific situations, but the people who decide how to attribute resources according to need still believe they occur only 1 in a million times.
Because these situations appear unlikely and rare to the general population and to people in authority, in particular, it creates the perception that the people who are desperately trying to draw their attention to certain issues are exaggerating the severity of the problem, are the exceptions, or are playing the victim and trying to avoid responsibility.
In truth, most of us are leaving out some of the more extreme or shocking details out of a desire not to appear to sensationalist. Imagine our despair at learning that a watered-down version of our experiences is considered too extreme to exist. The resulting message ends up being that we are too extreme to exist, and that message is reinforced daily.
It becomes a struggle to be heard. I wonder if so many of us become bloggers because we’re hoping if we just go viral enough, maybe we will be one of those lucky few people who get sent enough help and support (read: money) to be able to actually survive. To be able to relax and rest enough to get better, instead of trying to run a marathon on broken legs.
For every news story and viral campaign that gets shared, there are hundreds, thousands even, that don’t. For every person who has their life saved, their medication paid for, there are hundreds who never find a way to pay for it. Who never manage to pay their rent. To shame their city, some organization, or otherwise, into doing the right thing just this once. What happens to them? Every day becomes a struggle to become an exception because the world thinks we already are.
Because the horrible irony of our reality is that the proposed solutions: starting a business, blogging, crowdfunding, and so on and so forth, have an even lower likelihood of being successful than the perceived likelihood of us being in the situation. Precisely BECAUSE there are so very many people in our situation.
All of this is also made more difficult by the fact that many statistics are incorrect or incomplete. The rates of sexual assault in the general population, for example, are based on reported rapes – either to police or other tracking bodies. When taken into consideration with the low rates of reporting, it is believed that they represent only a percentage of actual occurrence of sexual assault. What’s more, because of the tendency for rapists and abusers to gaslight their victims and the existence of a social rape culture that treats certain instances of assault as not counting even when they are even by the lacking LEGAL definition – assault – there are many victims of assault who carry all the same psychological trauma of assault but who do not consider what happened to them to have been rape. I was such a person for example. This means that even an anonymous self-reporting-based statistic may be incomplete.
The ultimate result being that even with 1 in 3 being an already distressingly high occurrence, the real occurrence may approach closer to 1 in 2, ¾, and so on.
What’s more, when you break down these statistics further by demographics, the resulting picture is even more distressing, showing that belonging to multiple minority populations further increases the likelihood of assault significantly. Pair that with the aforementioned reality that being assaulted once increases the chances of being assaulted again, and you have a picture of a society that uses assault as a way of keeping people in line. See also… rape culture.
Certain statistics also ignore changing realities. The rates of disability in the general population, for example, may be increasing not because more people are sick, but because more people who are sick are surviving longer than before.
The problem is that while more of us may exist now, systems have not caught up to reality and are not designed with those facts in mind. As a result, what were once considered minor oversights that could be easily addressed on an individual basis have become big gaping gaps in coverage with not enough resource scraps to sustain all of us.
The proposed solutions are not sustainable and worse still often ignore reality. My favorite is when people try to suggest not buying a coffee as a solution for poverty. The horrible irony is that in a twisted sense, they are right because if the person speaking was willing to pay the cost of one coffee a year more in taxes, they could fund an increase in social assistance. For the cost of one coffee a week, they could probably help solve poverty more sustainably.
My not buying a coffee at most once a month, won’t change my circumstances because my problem won’t be solved by only $70. But the contribution of people who can afford to buy a coffee a day could mean that no children have to starve, that no grandma has to choose between a roof over her head and paying her bills, that no one ever has to spend every month begging for their life on the internet.
About the Guest Blogger: Ania Bula is a published author and blogger on the subject of disability. She has studied Biomedical Sciences, Psychology, as well as maintaining an active interest and research in areas of Medicine, Politics, Sociology, Psychology, and so on. She has worked in areas related to law and government, acted as a peer counselor, a patient advocate, participated in lobbying to change federal laws pertaining to disability, all while struggling to survive on disability and managing her multiple chronic conditions and resulting impairments. Her book Young, Sick, and Invisible chronicles just a part of her journey in getting her diagnoses and learning how to be herself in a new body.