I’ve simplified my “Misery Calculator” the rating system I was playing around with in early October to try and figure out how a person with disabilities can map out the medical and social factors that make up their disability experience. There are now six measures, three “Medical” (internal) and three “Social” (external):
Physical / “Spoons” … physical disabilities and / or physical stamina and wellness.
Mental / Cognitive … mental health and / or cognitive functioning.
Sickness … acute illness separate from a disability (i.e., a cold or flu)
Physical Barriers … building accessibility, transportation.
Tools & Resources … adaptive equipment, personal assistance, money.
Ableism … prejudice, discrimination, annoying things people say.
The idea is to give each measure a number value between 0 and 5 … 0 being “no problem at all” and 5 being “absolutely terrible”, or something like that.
This provides two measures of the disability experience: 1) Total Misery Level (total of all scores, compared to the total possible score of 30), and the Medical / Social Ratio (how much of your Misery Level is from “Medical" factors and how much from external “Social" factors.
Here’s me, as of today:
For me, my physical condition makes up the lion's share of my total disability experience, though social factors are part of the picture. Also, my disability overall is sort of in the middle ... less severe than many and more severe than some.
Understand that this isn't exactly the breakdown you'd find in every disabled person. The point is that each person's profile is going to be different. One reason why many of us emphasize the "Social" aspects of disability is that for a lot of people, they are more significant than their actual medical conditions. For instance, I can easily envision a paraplegic who is otherwise healthy and emotionally happy, for whom the biggest problems are in the architectural barriers she runs into, peoples' awkwardness around her, and maybe reduced job opportunities due to discrimination.
Another difference among us is that I'm sure some of us will have the same or similar ratings from week to week, month to month, while others might fluctuate quite a lot. And of course, we all go through days when the "Social" barriers all seem to crop up at once ... the days when you are fine, but you probably should have stayed in bed.