This post should be read by everyone without a disability! Those WITH a disability will chuckle as they read. Or cry. That leaves EVERYONE!
I use the transport chair when there’s a lot of ground to cover, like Walmart or the grocery store. It’s also the only chair my personal assistants could lift up. The only bad part: the transport chair is un-wheelable since its tiny wheels don’t allow me to propel myself forward like a regular wheelchair.
Otherwise, I walk, getting as much exercise as possible, with my personal assistant trailing behind me with the transport chair in case fatigue sets in and I can’t walk anymore. (I don’t like caregiver, caretaker–which, by the way, is for a parcel of land, not a person, companion, or aide so I single-handedly upgraded the job to personal assistant, or PA).
There is an interesting phenomenon that I noticed for almost the past 7 years since my hemorrhagic stroke. I feel invisible while sitting in the chair while the people to whom I’m speaking always direct the conversation to my PA, like I’m talking funny or I’m mentally incapable of understanding them. Sometimes I say, “Talk to me when you’re talking to me,” which works for some people and, if they still persist in having the conversation with my PA, I’ll stand up from my chair and say that line a little louder. That always works.
My most recent event is when I went to the bank to get a certified check just 2 days ago. The assistant manager persisted in addressing my PA as if it’s her account, and I stood up and repeated that talk-to-me-when-you’re-talking-to-me spiel.
“Yes, ma’m, I think you talk good and I completely understand you.”
It’s “talk well,” not “talk good,” but I let that one slide.
After that exchange, she addressed me, not my PA. See? Always works.
I was talking to my friend, Benadette, who is one of the “normals” and who used to work in a stroke rehab facility. We got on to talking about “disability etiquette” somehow, an expression I never heard before, and she suggested a lady in the hospital who was an expert on that subject, but I decided to do some research of my own. That term was right up my alley, given that event in the bank and so much more, and there were articles galore.
Here is what I found. They’re divided into do’s and don’ts and they’re for “normals,”–aides, caregivers, and all of the health professionals–all of the people we “disabled” people have to interact with on a daily basis. My top 10 favorites are:
DO: Speak directly to people with disabilities, not to the people who may be accompanying them. (Did you get that, bank manager, grocery store clerk, doctor’s office receptionist?)
DO: Be patient rather than try to fill in the gaps or speak for the disabled person.
(Why the rush? Give us time!)
DO: Think of a wheelchair or other mobility assistance as a part of the user’s personal space.
(Why lean on it, push it without asking, put your feet upon it, all of which happened to me?)
DO: Avoid patronizing people with disabilities by speaking extra slowly or patting them on the head, hand, or shoulder.
(One man even used baby talk with me, and I don’t think that was a come on!)
DO: Pull up a chair or bend down to speak to someone in a wheelchair to make us both on the same level.
(I always feel, when somebody towers over me, diminished!)
DON’T: Describe people with disabilities as “superheroes,” “inspiring,” “courageous.”
(People with disabilities just want to fit in. You get it?)
DON’T: Ask long questions with several parts. Many disabled people are, or have become, a one-tasker.
(Don’t take a chance. Disabled people, even “normals,” would rather you asked the question without several parts, like focusing on the second part and forgetting the first part. I have to laugh at our debates between the Dems and the ‘Pubs. I used to teach Public Speaking and can just tell when the candidates forget one of the parts! A look of despair comes over their faces!)
DON’T: Pet a service animal.
(Just don’t. Ask first. The service animal is hard at work!)
DON’T: Describe people with disabilities as “handicapped,” “disabled,” “victim,” “crippled,” or “damaged.” Use “people with disabilities” instead.
(People are not defined as being less than perfect. By the way, nobody is perfect).
DON’T: Stare. We may be funny to watch, but still….
If people used their common sense, just their God-given smarts, they’d know most of these points. If that’s true, and I really think it is, then why do they act stupid when it comes to “people with disabilities”?
As for me, (and I hope you, too), I am not defined by my disabled state. I just want to be one of the bunch, who forgets the key to my apartment a millisecond after locking the door, who becomes ditsy when my favorite group, Journey, comes on the radio, and who gets all mushy when someone wishes me a Happy Valentine’s Day. Just one of the guys. Don’t know why it’s not possible.