Wednesday, August 28, 2013

26 August 2013

How can I make Myself any Clearer?

One thing I have noticed, and has been demonstrated to me since the days when I used to do Rehab work (more than a decade and a half ago), is that if someone has a visible disability, the non-disabled are sorely challenged as to how to deal with them. If someone visibly looks different, that visual image releases all sorts of questions in those of normal ability. If people show motions that are different from the usual, I. e. various movement disorders due to injury or brain disorder. If you appear to not have any twisted, bent, broken body parts but you use a wheelchair, you end up in the same group. People are very good at spotting patterns and if you don't fit that pattern that is considered normal, people suddenly go all silly on you.

Personally I have had trained social workers swoop in on me, grab the handle bars on my wheelchair and announce,”Here, let me help you.” as they take over control of my chair and consequently me as well,to spin me around at a speed they feel comfortable with and zip me off to where they “think” I am going. Now wheelchairs are nice adaptive devices. They can be self controlled to move where and when I what to move to another place. But they are all not that comfortable. I have seen rows of wheelchairs parked in a line. Basically they are all of the same dimensions. And yet most of the people I have seen are not of similar dimensions. What do you suppose the odds are that any of those chairs are going to adequately fit the person selected to use that chair?

I have been in two facilities and have been assigned two separate wheelchairs. The one at the first facility fit pretty well, I could spend a long time in that chair before I got uncomfortable. In my present living arrangement the chair was assigned to me on what criteria I do not know. This present chair the seat to back angle is a 90 degree angle, which tends to keep me sitting at a bolt upright posture. The foot rests are not adjustable so my knees are at a similar angle and my feet are in one unadjustable position beneath my knees. I can tolerate just about three hours in this chair before my knees and lumbar begin to ache. The longer past the beginning of the positional aching the more of a toll it takes on me.

I have Multiple Sclerosis, the ways the disease works are similar for all MS patients, and yet everyone can have different symptoms. My last visit to the neurologist with whom I am treating was positive. In the last year the symptoms show little to no advancement in severity in the last year. Possibly the medication I am taking is holding the disease steady. I show no impairment on my cognitive ability. I have a little problem with disarthria. If I slow down I can form the word or since I have good vocabulary, I can easily find another suitable substitute word. I have some minimal difficulty if I move too fast or something in my visual field moves too quickly, I have a slight lag in my ability to make sense of where I am or what is happening. This is much like a small child becoming disoriented when spinning around in circles making themselves dizzy. It is about the same kind of temporary effect.

What amazes me is how many people, especially some family members, act like they are trying to humor me, and treat me like I have some kind of cognitive limitation. That is not my problem, it may be yours, but not mine. I really resent the arrogance, the haughtiness that this belief brings out in them toward me. If I speak up on this issue it only causes them to double down on their behavior and misunderstanding. They act even more as if I am cognitively challenged behaving as if my comments are even more proof of what they believe. This is a form of understanding that refuses to take in contrary information, and interprets it as proof of what they already believe. It is another demonstration of extreme lack of intelligence and mental rigidity.

Back to motive devices, granted there are different devices that are better at certain aspects of moving a semi-functioning body (more on that later), but the wheelchair is a good general all around mobility device to have available. They can be adjusted to fit your specific body more correctly, if designed this way. They can be possibly motor assisted to make distances and topological elevations easier to handle. But generally as one gets used to using their wheelchair for their short range mobility issues any unasked for help interference is an intrusion bordering on crossing one's boundaries. I try to be conscious of respecting the boundaries and wishes of others, in return I would like mine to be respected as well.

Such invasions can be as trespassing of one's personal space as your great aunt Eva pinching your cheek at a family get together and chortling about how she could remember when you were just a little fella. Chair users, disabled folks even, don't take kindly to that. It's demeaning. It shows a certain quality of assumption on the one hand and a certain kind of arrogance on the other. I know that people don't set out meaning to come across this way, but even if out of ignorance such acts hurt.

Speaking for myself, I have no problems hearing some one say, “I don't know what to say.” that is honest. I like honesty. Another honest line is, “I'd like to help you. I don't know what to do.” I like being helped, just ask me what you can do. I like being asked, it empowers me. I will appreciate you by leaps and bounds if you give me the credit for being more capable than I now am, and that you would like to help me. Now don't get all fake sincerity on me. I have worked with people most of my life, I will spot that faster than anything, I can see through that false quality like looking through a glass of water. Just be yourself, be authentic and don't worry if you don't know what to do. Its a being thing not a doing thing. There is nothing to do except to be.

This is actually the problem. Many people don't know how to Be, all they have experience with is doing things for which they are graded, judged, or approved. I am not here to do any of those things. I am at my best when I am allowed to just Be and I will afford the same courtesy to others.

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