Sometimes I feel very stilted writing here, so much so that I don't write. Period. End of story.
So much of my life doesn't fit neatly for a journal, or anywhere. Much of what concerns me doesn't make for great reading.
Like, one of the biggest issues I deal with a lot now is prejudice against disabilities. It isn't bad enough that my body has been afflicted with medical problem, but it is also a very visible medical problem. It affects my ability to sit (such a normal thing, huh?), to stand long (in one place), and walk (in other words, my mobility). Each of these causes severe pain, which, in turn, makes the visible problem worse (oh joy, let's just have more attention drawn to me and the problem!).
Until I broke my foot last year (another long story), I walked as much as possible inside and outside my house. I didn't use a walker or wheelchair. But, the broken foot caused that to change. I use a walker to pull myself to standing (that will change as my foot gets to bending more), and I had to use a wheelchair when out to get from point A to point B. (That too will change as I gain the strength lost from a year of not being able to put weight on my broken foot.)
The biggest discrimination I face concerning my disability is, believe it or not, from doctors and medical care places! Before, when I could walk without any assistance, people talked to ME. But something strange happened the first time I was in a wheelchair (and continues to happen). Medical Staff (doctors, nurses, etc) NEVER speak TO ME. They start talking to the friend who drives me to appointments!! "Can SHE stand?" "SHE needs to move over onto this so we can..." "We need HER medical history." "Here are HER forms to fill out."
WHOA! I stop the person -- "excuse me, I am the patient--ask ME!" Or "I am not deaf, blind, or incompetent and I can answer your questions/fill out your forms!" And guess what? They STILL IGNORE me! And, it is clearly "the chair" that causes this (wrong) behavior from them. I did a test recently by gingerly hobbling to the receptionist desk of an office where I've been seen before, and they spoke to ME. Same place where the week before they never acknowledged my presence other than by SHE and HER, directed to my friend ABOUT ME. No, it is clearly "the chair." And, what is amazing is these folks do not even know they are doing it!
NO person should be treated like this! Instead, every patient should be addressed by NAME (not honey, sweetie, dear, darling) and be spoken to DIRECTLY, regardless of using a wheelchair. "Mrs. Smith, here are your forms." It's very simple. And as a former professional in the medical field, I also KNOW that is absolutely the way a patient should be treated. Instead, I am treated as though their assumption is that I am incompetent or need a guardian!
And it is a very difficult thing to fight. Even though I verbally stand up for myself in EACH and EVERY situation, they then act like I have just been a "bitch" for telling them to talk to ME. My friend is not my caregiver, my guardian, my power of attorney (POA) or medical POA, nor is she my family member. I am not incompetent, unconscious or uncooperative. My mouth works, my hands function, I am 100% oriented to self, place, date and time. I can recite my medical history, my meds and allergies. What is horrible in these situations is the staff person does not even ASK FIRST to ascertain whether or not I am incompetent and therefore might need someone to speak for me!
The first rule of nursing is: ASSESSMENT, not assumption.
The problem I'm describing is HUGE, very widespread in my community, and deceptively robs a person of whatever dignity and independence they still have! Illness & injury, especially those requiring a long recovery, are already hard on one's sense of self, feeling of independence & mastery and all the things we take for granted when well. A wheelchair should be viewed as a TOOL, an inanimate object that allows transport. In no way should a wheelchair automatically label a person as being unable to take care of one's own business (forms, signature, medical history, etc.)
But other than complaining in each situation, there seems to be NO central place to place a complaint (except to each hospital, each doctor office, etc.). There needs to be ONE place, though, so that all these professional idiots (yes idiots) can get in-services that address this issue!
So there I've said it. This is something I deal with weekly, monthly. No, it isn't a topic that makes for "happy" journal entries.