Dienstag, 19. Mai 2009

Should Able Bodied/non-Disabled people comment on a disability blog?

I hope people had a good, fun or productive weekend, I am waiting for mine, and I know it will come. I wish I could be there emailing more people but it seems I actually am ill this time and exhausted myself I think on the weekend, mostly because we DID have good weather and I could not sleep as my body bloated itself. I also now believe that part of what wakes me is the level of toxins in my blood; or rather, during the day, I am able to pee, which is the ONLY way I currently have of getting rid of toxins regardless of if I have a seizures (which I often do while asleep), or have muscles repairing and the dead cells are thrown off….into the blood stream, which would normal excrete out as sweat. Right now, it just builds until either a signal in the brain or the liver or kidneys says, “hey, where did all these toxins come from” and tell my body to circulate more blood to the surface, to work harder, to heat me up and thus sweat them out. Except I don’t sweat.

I have been having some problems with hypertension while sitting down and what I believe to be vascular strain due to a very high fluctuation of blood pressure on brain and heart (short notes: brain go boom again). Dizzy and all that. Plus spontaneous bleeding which is sign on high blood pressure spikes as well. Or my divinity, it is really hard to tell. Due to these and other issues I got a record breaking number of postcards done: 2. Before you congratulate me, I wanted to get 50-75 done so TWO is not really what I consider an accomplishment. Nor was it because I was resting. Though I will soon (just as soon as I get this blog done!)

I was hoping to talk about some manga reviews soon as well as a post on my grieving. But I am simply too unwell to do either of those today so the question I will ask instead is one which I think some of my readers ask themselves: Should able bodied people, or people with different diseases post on a disability website like this (by the way, I still consider this a disability website, regardless of seeming to have disappeared off the radar of the disability world: death is the ultimate disability)?

There is the short answer and there is the long answer.

Short answer: if able bodied people did NOT comment I would be very disappointed, so YES, I feel they not only can but I hope they will more and more. Even though now I lead a vastly different kind of life than before I started falling down (yes, this is pretty much how I walked around the fencing club and tournaments after a good workout).

Long answer: I would say I have very little requirements or expectations of what people should be, but so many friends have countered that idea so I will outline the type of people I want and expect: people who want to care about other humans (or cute catgirls), people who want to learn about others, people who are willing to push at the stereotypes in their brains (learn, care, push self). If you don’t meet those criteria, don’t bother applying.

I have never had the type of stigma or open discrimination regarding my sexual orientation, and that includes all the stuff thrown at me as I have had being disabled. My same family (Linda’s) who wouldn’t assure my safety from drunk cousins or uncles or even a person to tell someone drunk and offensive to ‘stop it’ are now ready to see me. I am sexless, I have no orientation, I mean, I am withered, dying, wheelchair, oxygen; if I was human….that would be another story. I found out that until recently I couldn’t get arrested in this town, recently as in last year, because…..the jail wasn’t accessible. Indeed, this year, after WINNING the election, the BC accessibility awareness WEEK has been reduced to the accessibility awareness DAY. It is not that discrimination based on race, gender, sexual orientation and religion don’t occur regularly, it is just that the people discriminated against are united in one thing, their collective stereotypes against people with disabilities. And as a person who is younger and is ‘different’ in my disability than others, none is a greater example to me than the care giving agency and care givers themselves. Let’s just say having a legal document saying that we are legal married still hasn’t quite made it into the computer banks at Beacon – but hey, it has only been a couple years of care, right? And most of my suggestions (As well as books left on how to ‘cure yourself eating only green vegetables’) are by my care givers. I am sure if I had a broader range of people I could be discriminated against or brought up against the barrier of ignorance in many other places, I lack only opportunity.

So WHY, when every human being on the planet will become impaired, diseased or disabled, do we in the west want to remain in willing ignorance about it? I am not going to answer that. But those who do want to learn about what other people experience; from friends, to people from their church, relatives, or just people interested in the diversity of people, I WANT to be here and I WANT to ask questions.

While I have had comments from able bodied people attacking me for ‘getting out of my place’ (like last year’s 10K), I hope that I have never, regardless of pain, attacked or made a person feel foolish for asking a genuine question in an attempt to understand things better. I have asked questions of many other people with disabilities, some in emails, some on the blog, from how does the bowel go when it NOT go and ‘what IS the digit method’ that para’s and Quads use, to questions regarding mobility, how they have sex, fatigue, and pain along with pain control. Those with disabilities, disease and impairments are a vital and significant percentage of our population (1 in 6 I believe) and to pretend they don’t even exist much less be unable to know the basics to assist someone, or grant them ease. Or even know the basics of how to talk to someone in a wheelchair (sit down, so you are at eye level), isn’t really excusable anymore. I say that because there are laws, which make is costly to BE ignorant called the ADA or the EU laws, even Japan has a disability act. And yes, there are a lot of impairments but if any guy can know on 47 different arena’s the best weapon and place to make a sniper head shot in game X much less Game Q, Game V, Game L and Game R; know how to use their various devices from cell phones, blackberries to iphones, then I am certain that the ability to acquire knowledge is there. But yes, un-disabled/able bodied people are exploring a whole aspect of civilization that is foreign to them and may often seem maze-like and overwhelming. But we are a friendly bunch, by and large!

So spread the word, if nothing else, I have nice pictures of girls in revealing and tantalizing clothing (buy me this outfit and I will get my nails done – a FAIR trade!), that will get the guys (and more girls than you might think). And blogs, including this one are about real people, real lives – just like those a person might meet every day. Knowledge is power, knowledge empowers caring and kindess and to know and help your neighbor, blogs are a good place to start. Yes, I hope I never lose the able bodied, or non-disabled readers I have, or the comments they make, including questions which if I cannot answer, I hope another reader with a different impairment/disability can.

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