Wednesday, May 31, 2006

The disconnect between the Medical Community and the Disability Community

First, apologies for my absence. Combine too many projects with full time work, parenting, and a tendency to stay up late reading novels (the truth may hurt but it sets us free!) and you have a blogger who doesn't get around to posting.

Someone like,

The worst part is the blogs I haven't kept up with; I have some reading to do in the blogosphere today!

Mea culpa.


One of the vexing problems in my professional life is the disconnection between the medical community (and by this I principally, but not exclusively, mean doctors and other primary healthcare providers) and the disability community (including parents and individuals with disabilities themselves). At times this gap seems so wide as to be impassable.

Since I constantly have a foot in both camps at all times, from where I stand it often looks like two entrenched armies on two separate fields that have no bridge between them. And the purported messengers sent from camp to camp often don't even speak the same language. Worse: they think they are speaking the same language; alas, the words may be in the same tongue but the meaning is based on perception. And perception is, unfortunately, reality.

The Boston Globe article linked in the title is an example of one of the problems: prenatal testing for Down syndrome.

On the one hand, we have a group of medical professionals who recommend that all fetuses be screened for this "devastating" disorder. On the other hand, we have lots of families who ask, "what is devastating about this disorder"?

Down syndrome is not life-threatening; not a terminal disease; not a devastating disorder to the people running around with trisomy 21. That is a mis-perception by the medical folks, bought into by the community at large, and only seen as a misperception by those few "in the know".

The ones in that other camp, over there across in that field without a bridge: parents and people with Down syndrome, living life each day for better or for worse. Mostly like everyone else, faced with trials and tribulations, but also joys and fun.

Yet when that camp tries to send a messenger to the other camp, tries to explain to the medical camp that they have misunderstood the disorder and misrepresented the reality...they are met with stony silence. When they leave, the professionals will shake their heads and mutter about "denial" and "false hopes" and "reality".

And yet, by GOD! they are speaking from experience. So which perception of the truth is reality, anyway?

Another area of disconnect occurs in discussions of neonatal "quality of life" issues surrounding extreme prematurity. The medical professionals will introduce the concept of "quality of life" to the new parents by using examples of probable disabilities. They will, in essence, list all the ways in which the baby, if it lives, will differ from the norm and will talk about the "profound" nature of the disability and then make the argument that disability equals poor quality of life.

"Quality" being defined by presence or absence of disability. Good=less disabled. Poor=more disabled.

The other camp, over there, includes people with serious disabling conditions who refute the argument and say quality is not defined by the presence or absence of a disability. And I think they are the voice of experience, after all...but yet, they are not at the bedside with the parent. That person talking to new parents about their baby's "quality" is someone trained to view "quality" through a disability-negative lens.

Yet these same medical professionals, who are trained to judge quality of life based on presence of disability, are the same doctors we subsequently take our disabled babies to for treatment. In fact, the medical treatment of disabled children accounts for a great deal of dollars spent in healthcare. I might hesitate to go so far as to say some of us (that would include me, the person in the uncomfortable shoes on either side of that divide) make our living from the healthcare problems of disabled babies.

Except: we do.

This divide even occurs in the organizations we build. Although some of the large disability-specific organizations have physicians on their boards, by and large the disability-specific organizations are organized and run by either parents or individuals with disabilities themselves. And our professional organizations, even those dedicated to disability-related areas (such as a CSHCN Title V program) go to great lengths to have "parent advisory boards" or "consumer representation", but this is usually to fulfill some grant requirement and is not a real way to include non-professionals in the power-base of the organization.

Sadly, this divide seems to be getting larger instead of smaller. More and more conditions are pre-screened. More and more reports are written about the majority of Medicaid costs being spent by the vast minority of recipients (which is code for "people with serious disabling conditions requiring extensive technological support"). More and more parents choose alternative therapies and treatments because they cannot find a doctor in the mainstream interested in working with low-incidence and complicated conditions.

What's the solution?

I'm getting stretched tight between these two fields. I never was a cheerleader and don't think I can get down to an actual full split! This leaves me in danger of falling three ways: into the professional camp over here, into the parent/disability camp over there, or way down in the chasm in between.

It's kinda dark down there.



Blogger Dream Mom said...

Great post, Mary.

You are correct, there is a disconnect and it's always interesting to hear what each side has to say.

I find that medical costs are becoming the way most professionals and even the public are using as the way to evaluate if a life is worth living. High medical costs equals life isn't worth living or saving and they hide behind the quality of life issues as the argument.

10:26 PM  
Blogger mary said...

"High cost" is often, as I've hinted at in my Medicaid example, a pseudonym for "disabled".

Still, some high-cost lives are judged to be of higher quality than others. A non-disabled child with cancer who requires extensive treatments including chemo, surgery, bone marrow transplants, etc, is certainly high-cost. But his treatment is not seen as a burden to taxpayers.

A child with complex disabilities and cognitive impairments, requiring the same cost of services to maintain life, is a burden.

So I conjecture it's not cost at all that is the issue, but the perceived benefit resulting from the cost outlay.

And in the case of some of the kids I know, there are some who find their high-cost lives of small benefit, and so problematic from a policy or ethics point of view.

7:06 AM  
Blogger Dream Mom said...

That is a good distinction, Mary.

I often find it amazing how someone thinks that they should be the one to determine if another person lives or dies. I am a Mother and yet, I don't feel that is my decision to make for my son. Interesting discussion.

11:48 AM  
Blogger That Girl said...

I often wonder if there is a middle ground that someone smarter than I has not yet thought of. It reminds me of the debate on the cocclear (sp?) implants - deaf people say it is an insult to the deaf culture while parents of deaf children (and some deaf children) want to be hearing-abled.
Is there no way to allow deaf children to hear without making deafness a bad thing?
Surely there is some middle ground.
I love my son and he certainly knows no different life but if I could wave a wand and make him "normal-bodied" I would do it in a heartbeat.

9:45 AM  
Anonymous Anonymous said...

Dear Mary,

About 2 years ago, I was in a terrible accident which left me with a major brain injury. Overnight, I went from being a happy, healthy, intelligent, gainfully employed woman to being severely disabled. My life is an agony now on every level--physical, emotional, mental, financial etc. I would not wish this on anyone.

Of course, you try to make the best of things, and some do better than others. I have great admiration for those disabled people who are able to adapt and lead happy lives despite their disabilities. I am happy for them. I take inspiration from their successes and I hope I can follow in their footsteps. HOWEVER, to suggest that there is no link between disabilites and poor quality of life is utterly insane. My life has been completely ruined by my disabilities. Of course, I understand what you're trying to do here, and I appreciate it. But taking the argument out to its extremes like this does nto seem helpful to me.

Like it or not, I am one of the "voices of experience" you mention. And my experience is that these types of disabilities DO in fact cause unbearable suffering for many of us and pretending this isn't so is pure fantasy.


9:19 PM  

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