My BADD: The life no one wants and the war on disabled

I live a life that no one envies. And if you have a chronic disability, you probably do too.

Was that too direct, or do you want to tell me that this was choice three: #1 – Teacher, #2 – Librarian, #3 – invisible chronic illness even your relatives don’t fully research, believe and want to understand, and living the high wire emotional act of being dependant. Really?

My life is the kind of life where doing what I want, like blogging for BADD will always come behind the intractable aspects of my illness/disability. Life’s natural joy and excitement are now something to be bartered for. And that isn’t really the way things should be.

NO ONE should be born a second class citizen, and no one, particularly while helping keep many medical supply companies/doctors/medicine makers in profit, should become one just for being disabled. Yet many are. We are.

As a society we collectively set our sights too low. We can do better.

See, we have to do better. I have to do better, to learn, understand and being there for people with different impairments/disabilities/illness’. I have to fight as I can so that the quality of life of those with disabilities, and their value within the society will be higher, for those who come after me.

I believe a fully integrated society which values the insights and full participation of those with impairments/disabilities/illness’ is a better society. But that idea is not THIS society.

The problem is us. We blog in BADD often about ‘us disabled’ versus the AB, but the problem is just ‘us’: ALL of us. We all accept too readily the systems’ failure. With 1 in 7 having impairments/disabilities we already knew before we became disabled of a friend, family member, or someone close with a disability/illness and accepted that trying NOT to go through the system is what is important. 1 in 35 get MS. You really don’t know 35 people? Not even at university, or restaurants, grocery stores, neighbors? I have three neighbors with disabilities before I leave my own apartment floor. At university I knew many women with MS and what did I do to change the discrimination I saw directed at them? Where was my DAMN EMPATHY when I saw her struggling with the foot controls of a Dictaphone and heard the head of department discussing ‘how long they would have to keep her on?’

In a JUST world, I should be serving a community sentence, being forced to learn to care, or if I am a sociopath, learn to at least help.

But then are we a society of sociopaths, narcissists or just selfish people? If you want adult PEER PRESSURE, that is what every commercial, homepage and TV show sells. It is hard to have an equal and integrated society when even being facially different brings public scorn (72% of Brits feel that Susan Boyle should never have been allowed to appear on ITV’s talent show. After winning, she was offered a role on ‘Ugly Betty’).

We, collectively need to do better. My province has put on an high bonus for every time a doctor sees a patient with a chronic disease, because so many refused to take them as patients before. So now instead of punishing them for discriminating, we reward them for seeing well…us. Perhaps none of the Doctors or Specialist in BC read the Hippocratic Oath “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” Or perhaps they never bothered to tell the doctors that they would see patients, sick people – that IS the job of doctors, to see people, well, like us. To help people….like us.

What should been done in North America and in other countries is to raise the bar of acceptable standard of behavior for doctors. If a doctor ignores the main source of information (the patient), belittles them, assumes they are lying, assumes they are lazy, assumes because they are female it is: trauma, PTSD, depression, hormones, or ‘in her head’ – a complaint should be taken as seriously as a physical complaint. Because the ignoring of her, and her condition, the delay in treatment for her chronic illness IS a form of delayed physical treatment and well being – as harmful as an assault. They DID harm, and they should, since they seem incapable of having the morals to hold to their oaths, be held accountable. Often, sadly, the entire medical system can be a form of abusive emotional, physical and psychological assault.

I have yet to be able to take a MRI, CAT scan, or any other table test, including radiation injection testing on a table where I able not fully reclined on my back, often unable to talk and breath. Not the rarest of conditions, just one two entire HOSPITALS don’t bother about.

We (society) need to do better.

Having a near 80% unemployment rate for those with disabilities surveyed when the general population is 4-8% isn’t sad, it is an open declaration of the second place status, and social status warfare view of people with disabilities. In the last few hours, I have read three items, two books, and one a major advice column, all seeing the disabled, or those with disabilities/illness’ and facilities as to be ‘used’. Hey, problem with having opposite gender children to find someplace to pee? Then find a ‘handicapped toilet’ to use instead of a man going in the women’s restroom with his girls. The two books I read, both had the disabled/chronic illness characters, the OTHER main character in the book, and both die…..so the main character could learn a LIFE LESSON. Both these teen books were on the New York Times Bestseller List. A new generation learning ‘life lessons.’

We can do better. Where IS the disability awareness fiction section in the juvenile fiction section of the local library? Where is the display? (probably next to the invisible LGBTQI one). But at least LAMDA has the LGBTQI awards? Where are OUR awards, our book awards, our film awards?

But we, those disabled and with disabilities/illness’ are just as bad in ignoring. We find our groups, we band together and we bunker down. How many times have I heard, “Oh, I’m just glad after six different ones I finally found a GOOD doctor.’ – so an ‘I’ll find mine and then, finally, done.’ mentality. When do MS and CFS/ME get together to talk about fatigue? When do Fibro and SMA groups get together to talk about muscle pain? Or cancer and SCI groups get together to talk about dysautomia? They don’t.

Change Society, decrease an 80% unemployment rate, hold doctor’s accountable, change medica with awards and Disability Rights ratings of major corporations? Really? Let’s be real, right? OR, are all these things, as they say, ‘tried hard and found lacking’ or ‘found hard and lack in trying’. I am not asking for those with disabilities to change society, I am demanding society change itself! When most countries have a ‘no child left behind’ program, why then is there a ‘fend as fend can’ for those needing assistive devices, employment or assistance?

I have heard countless presidents, Premiers and Prime Ministers talk about the ‘New Economy’, but never about one where leaving over 60% of 1/6th of your workforce behind is outlined. It just HAPPENS. No. It doesn’t. Not in countries with human rights and disability acts, it doesn’t ‘just happen’ is simply isn’t changed from what happened before. The: “We don’t give a damn, because they are too diverse, too ill, and we are too used to this way to change.”

How is it possible when every family MUST know someone with a disability not to organize for basic things like recognizing that in the same way you get shoes and clothes after an accident, not understsanding that getting assistive devices for impairments are the same? How long until recognizing that the old models of looking at work as an assembly line (created in the 1910’s) and every worker as the same is a LIE. Right now we have the technology to employ as many of those with chronic illness’ and disabilities at the levels they can and desire to work. Right now. Except the very companies that make the software, that run the platforms, the top 500 companies are not rated on how they have advanced in employing numbers of those with disabilities. Not even in the Human Rights index. And the government…..it is easier to simply offer money, then portray those on disability as cheaters. OUCH, the BBC disability website regularly runs news highlighting cheaters caught on disability.

Why?

I went to the optometrist and it was ‘assumed’ I was on ‘blue’ which must be some code for disability welfare because once the worker found out I was actually using employment blue cross, they were rendered speechless.

That same day the paper ran an ad on how a half marathon is fundraising for wishes for people with terminal cancer…because the last director stole $100,000. I am positive he was not disabled, or a cancer survivor. He was just another of those who handle the programs, determine OUR objectives, all without talking to us. . From Crip camps to Respites, there are workers who want to talk to significant others, who want to get home, who want to have a paycheck, but they do not see us as the boss. Yet, without us, there is no job. We ARE the job.

I asked how often the care feedback forms came and when there is government review and implementation. I was looked at strangely. The managers, the RN managers, the health care middle managers might have feedback forms to give to government about client care….but what does that have to do with me?

“Errr….I’m the client.”

I am more than my wheelchair, I am more than my breathing device, I am more than my illness, my disability. And so are all those others out there. So are all those with invisible disabilities. So kick it in gear society, kick in it gear about real equality because we all know someone, and we all know the stereotypes (if we didn’t we wouldn’t keep saying, “Kill me if I ever get like…..” – what? Like me?). Stop trying to find the loopholes to the good doctor, the small good parts of the system and accept that it is broken.

Burn it. Rebuilt it. It wasn’t an accident that every wheelchair user in hurricane Katrina was killed. I was fascinated, so I watched 4 disc documentaries, washed away, left behind, left to die, left without medicine and without care for days…in a country that calls itself ‘The World’s Superpower.”

The world is seen as a comic book, according to language. But if a ‘power’ isn’t used to help (much less a ‘SUPER power’), I would kindly say, “What use it is?” But what I think is, “Well, isn’t that what separates the Heroes and the Villains?” It IS a choice.

That is my blog against disability discrimination

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.