Misery Calculator: Reheated, Renamed

Three colorful, unlabeled pie charts

This is the third time I've written about this, but it's an idea I can't fully let go of, so ...

One of the first things I wrote on my blog that came straight out of my head, and wasn't a commentary on something else, was an idea I called the Misery Calculator.

It grew out my attempt to more fully understand one of the core ideas of disability culture ... that the suffering in disability comes from ableism and external barriers, not from our disabilities themselves. I accepted this for years. Yet, I always found that there were some aspects of my actual disabilities that were hard to live with, and couldn't be blamed on anything or anyone else but my own physical condition. When I got into disability blogging, I found others in the disability community, particularly "chronically ill" people and "spoonies," who seemed to have the same experience, somewhere between the Medical and Social Models of disability. A perfectly accessible, non-ableist world would be a lot better in a thousand ways, but at least some of our disabilities would still be there, causing at least some amount of misery.

So I came up with six measures of "misery" associated with disabilities. Three of them are basically "medical," existing in your own body, and three are "social," factors that exist in the world outside of yourself. For this post, I've tweaked the categories and definitions a little, but they're basically the same. I've also decided to change the name of the thing to Disability Calculator. Here are the measures, roughly defined:

Medical

Pain / Illness
How much do you hurt and / or feel like garbage?

Stamina / "Spoons"
How much energy do you have to do things?

Physical & Mental Functioning
How well or poorly is your body and / or mind operating?

Social

Physical Barriers
How often are you blocked or inconvenienced by physical barriers?

Lack Of Tools & Supports
To what degree do you have or lack the tools and supports you need, and do they work right?

Ableism
How much does disability prejudice deprive you of opportunities and / or add to your stress?

This corresponds to the Medical Model / Social Model idea. The six point set of measures, divided into two broad categories, allow you to get a feel for how much each "model" really describes your disability experience. You also get a 0 to 30 point measure of how much overall disability you experience, both Medical and Social.

I am going to start running a weekly score for myself, just to see how much my Medical Model / Social Model balance changes over time and in what ways. Here is my score for this past week:

Text version ...  April 2-8, 2017  Medical  Pain / Illness: 3 Stamina / “Spoons”: 7 Physical & Mental Functioning: 3  Social  Physical Barriers: 4 Lack Of Tools & Supports: 2 Ableism: 3  Medical: 13 Social: 9  Total: 22

What this tells me is that while I experience a significant amount of difficulty that corresponds to the Social Model of disability, most of the problems I have with my disabilities come the disabilities themselves. And by far the most significant single factor for me is stamina. I'm rather a "spoonie." On the other hand, I do encounter some physical barriers in my daily life, (mostly having to do with being 4 feet tall in a 6 feet tall world), and some ableism, On the plus side, I have pretty good and effective, (though not complete or perfect), tools and supports. At least that's how it was for me last week.

Try it yourself. Give each measure a score between 1 (good) to 10 (bad), based on your disability experience the last week. What's the balance for you?