To begin, rather pithily: I have had very mixed experiences with medical professionals throughout my life. Some have been fantastic. Some have been middle-of-the-road. And, as you might expect to hear from a person with a chronic pain condition, some have been absolutely awful.
Recently, I had a fantastic experience in a consultation with the oral surgeon who will be — at the time of this writing — removing the three wisdom teeth that I have in my skull [note: by the time this post is up, I will be recovering from the surgery and therefore on a bit of a break from blogularly goings-on]. Given my past experiences with medical professionals, I was not optimistic going into the consultation. I have a pretty spotty history when it comes to dental sensitivity, have been labeled an “anxious” patient in the past because of said sensitivity issues, and thus have a mountain of concerns about surgical procedures because of the medical conditions that I already have — cerebral palsy and fibromyalgia among them. I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).
Interestingly, this was one of those times where I would be happy to be wrong. The oral surgeon not only explained the actual procedure to me in great detail, but listened very patiently to my concerns about possible issues due to increased pain (possibly relating to fibro, as it tends to flare up after any medical procedure that involves high doses of medication that I do not normally take) and muscle spasms (that would be the cerebral palsy, which has left me with muscular weakness on the left side of my body and occasional spasm attacks in my left leg). He also asked many questions about both the fibro and the CP, and reassured me that he and his staff would watch for things relating to each condition that could possibly occur during and after the procedure.
This consultation — and the oral surgeon’s taking my concerns so seriously — was a welcome break from the fighting-an-uphill-battle-with-my-bare-hands sort of feeling that I’ve gotten from some past medical and health-related consultations. I am, of course, of the opinion that these sorts of positive experiences should not be this unusual, and that they apparently are so unusual gives me pause for a myriad of reasons.
Disableism Impacts Families
This choice that is being forced upon me is impossible. I must either tolerate physical pain at the hockey arena or emotional abuse at the dojo, if I want to be a part of my child’s life. It’s ironic that disabled mothers are often viewed as incompetent but where is the discourse surrounding the ways in which our parenting often occurs under extremely difficult situations? I suppose, of all the people on the planet that Destruction and his brother Mayhem provide the best reason for me to want to rise above, but the constant pain requires more of a super human effort than I believe that I am capable of.
Murphy’s Law And Disability: The Week From Hell
Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.
Not this week though.
This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7? migraine.
Accessibility and Gaming: Randomizers
Most traditional six-sided dice may be tactile enough that someone who can’t see could feel the result. There are also special “Braille dice” available for not that much more than premium gaming dice; they’re more properly called tactile dice since the faces are traditional die pips and not true Braille numbers.
So, blind players can probably get their hands on accessible d6s, but to the best of my knowledge there are no tactile dice made for any other types of dice. Champions, anyone?
The wrong message – still
I don’t know who dreamed up the concept of “disability simulations” but they have been around for a mighty long time. My lifelong friend, Michael A. Winter, now the Director of Civil Rights for the U.S. Department of Transportation, first exposed me to the shameful practice. Michael and I were classmates at a segregated school for crips and met in 6th grade. We attended the same university. As undergrads, Michael formed a group called Wheelchair Action. When the Rehabilitation Institute at Southern Illinois University sponsored a disability simulation, Michael and members of his group stormed into the classroom and tried in vain to halt the fiasco.
Professionals who are nondisabled rarely stop to listen to the people who live with disabilities. I was proud of Michael for trying to get people to understand how destructive these simulations can be.
What Makes A Good Doctor?
Dean Tom Marrie is interested in hearing what kinds of qualities people value most in their family physician or specialist. What do you appreciate about your doctor? What do you think physicians of the future will need that might not be taught at med school today?