It begins with Ashley.–4th and final update

January 4, 2007 at 7:20 PM (Mad Medic Thursdays) ()

As I thought…not a word from the disability community was presented onscreen. [Update/ Modification: they are having a disability attorney who also is a caregiver for a disabled son on a new night 1-9 2006]They did have an ethicist who took the position we need a that society should assist the parents with tech and support and another who basically said, [I’m paraphrasing here] We don’t deny patients Prozac because it alters them, so why not have this treatment…both ethicists were, of course able and male.

2nd Update January 8 2006.

On CNN tonight: Paula Zahn Now is running this story tonight January 8th 2006 @ 8:00 EST
I’ve emailed them Mary Johnson’s analysis listed below, but I’m not holding my breath waiting for them to use it.

I’m trying to stick to the facts, to the level of cognitive impairment that this girl has…

and as I think further, I’m half wrong…no one actually knows to any degree of satisfactory certainty what kind of inner life a three month old child has, and how it might be adversely affected by not being permitted to develop.

I *hope* that this is just misdirected love for their child and I will assume that.

Here are the troubling things about this for me.

If we begin here, in the case of severe cognitive impairment, none of the sympathy given the parents does *anything* to assure me that when the *physician led ethics committee* agreed to this, that there was any kind of discussion of “this far, but no farther.” They aren’t Mengele…there shouldn’t even be a “ok” for the cognitively impaired but not for the rest….and *as* for the rest of us….I didn’t hear:

“We, the educated medics, would *never* consider this kind of involuntary bodily mutilation for a person say who was *just as physically disabled and difficult to move as Ashley,* but will have the brain, and emotions and sentience of an *able adult.*” I am not convinced that those of us less impaired than Ashley (I have cerebral palsy, asthma, and other impairments) aren’t *put in danger * of losing rights, and quality and nature of our lives when these things are permitted to take place.

This *isn’t* about the parents at all. I don’t dispute that they believe they are doing the right thing by their daughter. Truly *ethical* physicians *would have stopped this.* Also, if we watch out for the rights of “the least of these,” we are also protecting ourselves. To the parents I say…a Hoyer or other lift isn’t “impersonal.” It can be *freeing* for the parents.

Yes, those of us whose impairments are “nothing like Ashley’s” as the doctors suggest have *every obligation* to fight against such things, to have a hand in making sure that such things are *never thought of as ok,* so that such can *never be done to us!*

That said, if it had simply been a hysterectomy, I would have found that “troubling, ” but not the dangerous beginning of a slippery slope that I see this as.

For the record.

My parents were told I’d be a mental vegetable.

I have a Masters. I’ve been married and widowed.

Early diagnoses can be wrong, or overturned by advancement.

And, *Anything between non-sentient and geniuses is *worth cherishing as is*

I don’t find fault with the parents as laypeople who love a child and have specific ideas on how to handle their daughter. My perception is that those ideas are wrong in a larger context and actually unintentionally dangerous to the rights of all people with impairment.

I find fault with the medical
“experts” who ought to have attempted at the very least to convince the parents of the lesser evils of a hysterectomy, encouraged Hoyer lift use and a support system for the parents.

And another thing or two I had to add:

First, and I had forgotten, there are *chemical* ways to stop menstruation: in other words a hysterectomy was the *most invasive choice.* And, as for avoiding pregancy, birth control shots exist that could certainly have handled that, or a tubal ligation, a much less invasive physical option… (If the family history *specifically* ties to uterine cancer, not just cancer risk as a whole, then that would make the choice more understandable, in my opinion. If it’s ovarian, remove the ovaries…etc.)

And secondly The prognosis for Ashley, if even *correct* is, as with any diagnoses *as of the present state of medical science.* Just imagine if in ten years or fifteen, some procedure yet unseen or unknown could increase her cognition or other ability? If, by *positive* medical intervention sometime into her adulthood she became able to judge these events for *herself?*

I wouldn’t want to be her parents on that day.

********************************* Update Sat Evening MST********************

Via this
thoughtful, detailed analysis by Mary Johnson at WIMNS blog, she asks a question that so many have asked why those with impairments are largely left out as being any sort of expert on disabled lives in media stories such as Ashley’s, and the UK’ press response.

Permalink 11 Comments

How much Anesthesia can Dance on the Head of A Pin? Mad Medic: Thursdays

December 28, 2006 at 4:03 PM (Mad Medic Thursdays)

I was on my stomach on a hospital bed having been told that a bone marrow sample would need to be taken. No exam room, or surgical suite…just a curtain for privacy. They would anesthetize each of my hip points with [drug I forgot, I assume a numbing agent of some sort] and then give me Demerol. Because the necessary equipment to extract the bone marrow simply could not do the job unless I had been anesthetized.

Ok…Young unknown doctor. Not my resident or Presiding Oncologist. Made A Collossal Error.

Did not numb both hip points first. Only numbed one, and did not numb both…also the Demerol was not in evidence. I think maybe there should have been an anesthesia toad to numb both hips and jack me up on Demerol first before the person set to do the actual procedure arrived

When the un-numbed hip got invaded, I jerked and shrieked. And continued to do so while the doctor yelled “What are you DOING?” at me.

Should be obvious, earnest young doctor. I’m in a level of pain heretofore undiscovered and it’s so huge that I could give a shit about the perpetually open hospital door and the grey haired old visitor ladies fleeing down the hall to get away from my exposed backside and/or banshee sonics as soon as was prudent.

It seemed like we had three presidential administrations and two world wars before the second hip got numbed and the Demerol arrived. Demerol is not like being stoned at all. You can view your physical pain perfectly as it shrieks and twists and jiggles off Thirty Feet To The Left of You. You can hear it and sense it but you feel it as if it’s attached by small optic fiber cables that are mostly filled up with fog, so that the pain itself really cannot get to you.

For future recipients of Bone Marrow Biopsies: Make freaking sure you see

1. The two separate doses of numbing medication.

2. Clear instructions for administering same.

3. The Demerol

The biopsy was clean.

When I asked, at the end of my course of chemo if they were going to harvest some of my own bone marrow in case the Hodgkin’s came back, my normally excellent resident joked that he did not need a Porsche that year, so no.

It could be my life and not a freakin car, Mr. Hotshot Resident.

I’m putting this on record in case it comes back and gets to the bone marrow before it is rediscovered so my heirs have a clear picture of the chain of events.

Permalink Leave a Comment

Doctors Say the Darndest things.

April 23, 2006 at 8:21 AM (Mad Medic Thursdays)

Inspired by a post over at The Gimp Parade, about how the answer to disabled people is more and more likely to be anti-depressants (WTF!!!)

(I take them because part of my smorgasbord of impairments is *chemical depression,* not because I have physical impairments, but because the history of mental ilness among those genetically related to me is…well…significant)

Here are a few gems given to me by my mostly male physicians

1980: “The reason you’re so well adjusted is because you don’t know what you’re missing.”

1991: (Possibly *the* most mind blowingly dumb question I have *ever* heard a physcian ask a patient. I had just been given the news that I had (possibly terminal) Hodgkins Lymphoma on top of everything else, and was taking refuge from my screaming emotions in a rational intellectual examination of the treatment needed and my chances for survival. ) This bugged the doctor so much he said rather archly, “Aren’t you afraid???!!!!”
I said “Of course I’m afraid.”[you clueless attempt at a physician, certainly I’m afraid. I’m freaking for my very existence, I’m terrified, I’m crazed with fear, but I know that allowing that out of my control right now will not give me the information I need to maximize my chances for sucess, so kindly STFU with the irrelevant questions]

and 1996 to 2004 again and again and again.

“You know if you lost weight all of this would go away.”

IBS,
Cerebral Palsy

Have nothing to do with body size in and of themselves. They exist irrespective of weight.

Osteoperosis
Asthma
Carpal Tunnel
and
Chemical Depression

are made worse by weight, yes, and three of the above Asthma and Osteoperosis are shown to have significant improvement once one is no longer seriously overweight.

Carpal Tunnel and Chemical Depression will be part of my mess no matter what size I am.

And then,

“You don’t have IBS what you need is some counseling.” This selfsame physician’s assistans attitude changed dramatically when I happened to have an attack *in her office*

To her credit she chased down and found the medicine that is allowing me to work right now, but I had been a patient in that office since 1999, and the correct medication didn’t find it’s way to me until 2005.

Doctors don’t want to know what makes us tick anymore than the rest of society does…they don’t have the inclination to discover that qualitiy living can and does exist among those with impairments.

Permalink 2 Comments

The Doctor Fight

May 3, 2005 at 2:28 PM (Mad Medic Thursdays)

Those of us with disabilities know this fight. It’s the conversation we all hate: Trying To Convince Our Doctor That Something is Up.

Dear Doctors:

So many of you assume that you know us better than we know ourselves.

Go read Ad Nauseum, the above linked blog.

Permalink Leave a Comment