Running around my internet space, drumming my feet on the floor, and pulling the hair out

May 11, 2012 at 6:23 AM (Uncategorized) (, , , , , )

of my head.

Because while this post shares some truly laudable ideas…

It is, at the same time, (the New Ager portion of my family may never forgive me for this one)

An incredibly large stack of misguided muddledom.

First, let us give credit where credit is due.

I love this picture :

Post image for Dear LOA: Why Are Some People Born Disabled?

First of all, we have to dispel the idea that being “disabled” is somehow a “bad” thing. We assume that it is, but we can never actually know what someone else’s experience is really like. When you look at a disabled person and judge their experience to be somehow “less” than yours, you’re actually doing them a disservice. Why do we assume that a life without hearing or sight or the use of one’s legs is worse than one with these supposed “shortcomings”? It is different. But different is not the same as worse.

They seem to have come up with a primer version of the Social Model of Disability, that it’s not the condition, but societal barriers that ultimately hinder those with bodily difference, all on their own (virtually pats LOA blog on the head.)

We can have fun, fine, productive lives with the right supports and a supportive circle of friends/family (my def of productive is a bit broader than the work for money version)

But here’s where they begin to fall down the rabbit hole.

When a baby is born “disabled”, it’s generally due to a pre-birth intention, instead of the result of resistance. It’s important to understand that nothing has gone wrong. This baby is not being punished for anything and neither are the parents.

If a child is born with a disability, I agree and have stated that the blame game (blame it on the parents) is non productive and wrong in most cases.  But to tell parents that their child chose such a thing, might leave them thinking they have less responsibility to nurture, help and direct that child in the path of the best supports for them.  Or encourage the worst of them to abandon that child, because after all it was the child’s intention to become disabled.

Madame Marshmallow Prophet, babies do not have the capacity to choose such things. I’m aware that science makes you run for the granola, but sentience must exist to create intention, and it takes a while for babies to get there. The brain doesn’t boot up until weeks into a pregnancy, and it doesn’t have the capacity to decide on body setup, even out of the womb.

Some “disabled” people have a very hard life. They are bitter and unhappy and fully believe that if they didn’t have this disability, their life would be much better. Some people who have no visible disabilities feel exactly the same way. They are bitter and unhappy and believe that if their life was simply different in some way (born to different parents, win the lottery), their experience would be much better.

A large percentage of the unhappiness of some PWD’s comes from others attitudes about them, and external barriers…It’s not necessarily the condition itself that makes things difficult on a day to day basis, but the way the outside world handles it.

Some disabled people are perfectly happy. They enjoy every minute of their lives. They’re happy shiny puppies. Some non-disabled people have achieved this high vibrational state, as well.

First, I’d like to say that if one sees a shiny puppy, it’s a pretty good bet that a puppy bath will soon be in order. Second, no one, impaired or not enjoys every minute of their lives. That is an impossibility.

And while I’ll completely commit to and admit to being as one ex friend put it “A bitter, judgemental b!tch” sometimes, that’s my right as a human being. It sometimes has to do with my impairments, but not always. I firmly believe if I were able bodied I’d have plenty of BJB moments because well, that’s just how I roll.

Yes, as the impairments have piled on I have more crying towels handy. I try to handle it by (old method) bitching and (new method) working out.

This person’s belief system is clearly a linear descendant of Bernie Siegel, the guy who figures if you got cancer, then well, some how you unconsciously wanted it.

Here’s proof:

“Disabilities” later in life are manifestations of resistance

When an adult has an accident or illness and is left without the use of part of their physical body, this new limitation represents a manifestation of resistance. It’s no different than if someone manifests cancer or pneumonia. The experience they are having will be a match to some belief they are carrying. The disability manifested both as a result of the resistance and as a way to overcome it. For example, someone may feel trapped in their job. They feel like they can’t move, can’t breathe, can’t get out from under the enormous stress. They ignore the negative emotions and keep on triggering this belief, until one day, they manifest an accident, leaving them without the use of their legs. Now, they are literally trapped in a way, their ability to move has been impaired. The experience (trapped in a wheelchair) matches the vibration (trapped in a job).

But, while this experience is evidence of the underlying belief, it’s also an opportunity to release it. If this person finds a way to feel free, even while in the wheelchair, he will feel free in the other areas of his life, as well. And then, it’s entirely possible that he’ll manifest a way to regain the use of his legs. [Note: Brain damage essentially works the same way, but is much more extreme. It involves a partial to complete withdrawal from reality, often the result of SEVERE resistance.]

As a cancer survivor, Madame Marshmallow Prophet, I can tell you I never asked for that, nor would I wish it on my worst enemy. I embrace the cool people I met while under treatment, and the life lessons learned from it, but in no way does that mean that some subconscious, woo-woo scary part of me walked up to the menu board and ordered Hodgkins with a (very late) side order of lymphedema. Or that, as a baby, I chose Cerebral Palsy, or that as an adult I went looking for asthma, carpal tunnel, or chose (are you KIDDING me?!!!!!!!) depression.

I recognize that in some weird way, you think you’re helping. You aren’t.
This is just as bad, in its way as the medieval notion that disability is the result of sin.

Disability is neither a choice, an intention (except in those rare cases when an adult decides to injure themselves) or a sin. Impairments can arise from spontaneous mutation, genetics, accident, injury, or other as yet random, unknown reasons. Putting it out there that that isn’t so borders on the irresponsible. It impedes any adult wrestling with the medical and social implications of a newly arrived impairment from arriving at the balanced, fact filled way of moving forward in a good life while also being a person with disabilities.

Bleah. Knowing this load of **** is out there can really ruin your morning.

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Some days, I’m just a troglodyte…

May 9, 2012 at 5:27 PM (Uncategorized) (, , , )

A caveperson refusing to embrace the grownup idea of what’s a good thing, and instead pout because it came along too late for me.

My grown side is really excited about what cord blood might mean for children with cerebral palsy….the potential for building or rebuilding some of the less than optimal parts of the way we talk to our muscles.

But then I just get irritated.  I’m such a mental two year old sometimes.

“Could’ve helped me.  Why didn’t you bright lights of medical marvels come up with this years back?”  It has resonances of when the first HIV cocktail medicines became available two years too late for my spouse.

It’s why the old “cure” paradigm is so useless for a fulfilling life.  You don’t sit by the phone and pine for this stuff, especially when you’re way past twenty one.

If it shows up it shows up, use it then and be pleased about it.  And if it doesn’t, or it shows up late…you deal with what you’ve got.

Whaaaah.  Bitch complain.   But then I just shrug and say to myself…”Well, I’m doing rehab….I’m seeing some small improvements.  I’m doing what I can do.

I think, in this case it’s part of the broader irritation with having turned fifty this past year…

more and more things just aren’t going to happen.

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Talk of the Town

July 28, 2011 at 6:14 AM (Uncategorized) (, , , , )

Somewhere floating around in my head I had this idea…that there must be some places where complaining about the physical effects of one’s disability sound really stupid… in a housing development where all residents have some kind of physical impairment or other.

Turns out, that’s the case for some of the folk here.  If you’ve had some sort of attachment to being ‘special,’  in the wider world,  losing it here is a good idea.    Sometimes,  too much bemoaning of your situation can earn you private scorn.  (although the folks I’ve met are always courteous to everyone who is courteous to them as regards public interaction )

I like that.  A surprising side effect is:  when complaining of these things is a faux-pas, when extended kvetching is ‘just not done.’  you tend to do it less about this aspect of disability overall.

That doesn’t mean there isn’t a fair amount of conversation.

There’s plenty of active discussion about how the able do view us, positively or not…the social barriers and aspects of disabled/able interaction,  get a fair hearing.  Sometimes politics makes its way in …and the issues that everyone, able or not talks about…paying bills, what’s on sale, what social activities are ahead…family etc.

(and my newest pleasure,  local information, and the history of the housing company itself. Good stuff).

It’s a relief, really.  Good solid proof that PWD’s are just people.  With more assistive tech perhaps, but in this age of the I-Phone, the Netbook, the I Pad and Pod…I’d imagine the number of assistive tech devices is beginning to equalize between people with disabilities and the more tech-obssesed of the able.

(In other words: “I’ll see your blackberry, and raise you one power chair.” “I’ll call, because I want to see how your Kindle, I-Pad and Netbook straight stands up against my ‘hand’ of a walker, a service dog, and a mechanical bed full house etc, etc, etc. )


This isn’t one of those expensive assisted living complexes or a nursing home. The only three differences between this complex and any apartment building you might drive past,  is the fairly stark utilitarian hallways, with handrails, the only part of the place that does sorta scream nursing home… the incredibly  physically accessible features of the building and of each unit, and the number of aides seen moving through that assist neighbors with activities of daily living.

(I’m on a waiting list for such services.  After three months here, turns out there are still some things that I need assistance with.  I had the naieve idea that because of the features here,  that I could handle every single chore completely on my own.  Not quite.  I need *less* assistance than in Colorado, but unfortunately ‘none’ won’t work long term either. )

It started out pretty damn cloudy today.  I’m going to see if some outside time might work out later…chat a bit.


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As we speak…For Blogging Against Disablism Day 5/1/2007

April 30, 2007 at 6:23 PM (Assumptions, Attitude Adjustment, Disability Blogging) (, , , , , , , , )

As we speak or type, or sign….

First the good news…there has been what I can only call an explosion of blogs by and for and about people with disabilities and their allies in the past year…it’s tough to keep up, but fabulous to see so many. They aren’t comfortable simple, easy ‘happy happy’ stories…but they matter, and they give a glimpse into the worst and the best that happens around us, to us, and because of us, a joyful, painful, scary, wry, complex story that needs to be written. We’re writing, speaking, signing, typing all over the Internet and beyond into the mainstream media a time or two.

But, as we become more ‘visible’ the social model of disability, that theory that says that architectural barriers, as well as negative attitudes, stereotypes and prejudices about people with impairments ‘disable’ us more than physical difference ever could. rears up and gives us a new version of an old standard.

The idea that because we’re physically different, or our thought processes might be different, or our method of communication different…We shouldn’t have had an opinion, particularly about the Ashley treatment. Those who agreed with the procedure were outraged at our outrage, angry at our anger, snarky at our snark, or just plain clueless. Many spoke their mind in such a way that indicated that us *having* an opinion was so obviously riduculous and wrong that a ton of slurs came our way.

Excuse me???

We don’t *get* to have an opinion????

About *ourselves* or someone like us…What? We don’t *get* to have an opinion? We aren’t allowed to think? To question? To research? To try to explain to the able?

Why the *hell* not?

When the Ashley story broke, there was so much anger, even hate, that we would dare to wonder at what led to the decision to treat her in this way.

That almost bothered me more than the treatment itself. That it wasn’t just that the concerns of the disability community were treated as though we weren’t there…that was the old way, the pre-blogs-on-the-rise way…

The new way to “disable” our concerns was to be affronted, bitter, angry,spiteful that we *dared* to raise the questions that must be raised, if we’re to advocate for others of our tribe, the disabled, to be spared this… that we should just shut up and be quiet and be grateful that there were caregivers for us….

We’re not going to the back of the Internet.

There will be no wall built at some virtual “border” to keep us from writing.

There are no great flights of stone steps we must crawl up.

Our opinion has been hidden, limited or *missing* from discussions about medical treatment, education, employment,access, travel, architechure,institutionalization, for most of history.

It’s here now, and disagreement is expected, certainly. Examination of why we feel as we do. But not dismissal. Not abelist arrogance. (or worse condescension, the verbal equivalent of the pat on the head of a beloved pet…”That’s nice dear, now go sit back down.”)

*Listen to us!*

Before we’re gone and you can’t learn what you need to learn from us…

That there *is* *no* *normal!*

Just difference all ’round.

That we have an elegant and unique dignity all our own.

Before we and those like us are ‘perfected’ out of existence, or warehoused, or killed, or forgotten.

*Listen to us.*

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Medical Model, Social Model and betwixt and between

March 3, 2007 at 10:26 AM (Uncategorized) (, )

I apologize in advance to those that read this space who are firmly and completely in the “Social Model of Disability” camp.

I just can’t wrestle this all the way to the ground and feel comfortable with it…

First, the good side:

I believe society and attitudes should *not* constitute a level of isolation and barrier so great that it is greater than the impairment itself.

I do.

I also believe there are many many people who, in order to force society to treat them as people first, with the respect and dignity everyone, able or not deserves, say “My impairment is an integral part of me, and I would not be “me” without it, so I and my impairment are fine just the way we are…”and that is truly the case for them…

But, I’m sorry. This is where in my real day to day existence, the wheels fall off that wagon for me. Much of the time, this sounds like my therapist talking to me back in the late eighties, when I came to realize, that conventional therapy tries for a positive outcome by changing the client’s “perception” of the physical/emotional difficulties I was going through…

“Things are never universally ‘bad’ or ‘good’ it’s all in the way you percieve them.”

I’m sorry.


And, in the haste to avoid the ‘victim’ label, or to make sure to disabuse the world of the notion that doctors are all knowing and that no one should assume they or any other caregivers have our best interests at heart, *any* medical intervention that might be a positive seems to be scorned. (I’m not talking Ashley. I’m talking medicines, common surgeries, and cool tech.).

So I’m stuck. The social model of disability is what I *want* to be true for me, as for others.

Because that means that physical and social barriers have a hope of coming down.

I’m not a victim.

But…without medical intervention I would not be able to work or socialize or be further down on the depression/anxiety rollercoaster than I am right now. I’m not about to say, “Me and my impairments we’re fine with each other so fork over the necessary dignity and respect.” Instead, I’ll say: “Give me some dignity and respect, dammit and right now, so that I can better bear the phyisical and emotional costs of my impairments.”

Because I won’t mealymouth around and say that none of my impairments hurt me, hinder me, piss me off, and force me into several difficult workarounds or prioritizations. They do cost me. Every goddammed day.

So someone well versed in the social model….explain to me how I get to a point that to be a true example of the social model *all* of my various impairments are really not the problem, that society is…

I can chime in with a yes for cerebral palsy and the carpal tunnel. They are not in the ‘hindrance’ category for me these days.

And, asthma is just an annoying pain in the ***.

But the other two. I’m not fine with, and cannot dismiss them and say “You see? It’s solely the ramp I need and the decent socialization that society learns about when they decide to treat us as people….those are my only real problems…”

I’m just unable to do that. So the whole theory seems to turn sour in my head.

I’m not opposed to that view. I just don’t see how I can ever get there….

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