Disability and Social Responsibility

    For those who follow disability issues, the NYT story on very premature babies is not too surprising:

Children born prematurely at weights of 2.2 pounds or less during the 1990's have high rates of mental and physical disability, despite advances in treatment that doctors had hoped would improve their conditions, researchers are reporting today.

     It has long been known that children who are afforded heroic interventions to overcome prematurity - and sometimes that prematurity is induced to address some existing physical anomoly - will likely face serious and continuing health problems.  But we tend to focus, both as individuals and as a society, on the save-the-baby heroism and to forget about how to support the family over the long term.  I think we should, in general, save the babies, but that we need to take more seriously our social responsibility to provide on-going care for the disabled children who are saved.  And I think Confucius agrees with me.

    I know well the parental impulse to do whatever can be done to help a newborn child in trouble.  When it became evident that Aidan was disabled, my wife and I grasped whatever thin reed of hope the doctors offered.  In an odd sort of way, I was comforted by uncertainty: the doctors could not tell us with any precision just how his disability would manifest itself, and, for me, that left open the possibility of a fairly good outcome.  It did not turn out that way, but that is another story...

     We cannot, then, expect parents of premature children to easily accept doing nothing - that would go against a very deep and powerful instinct.  And when parents say, save my baby, doctors will respond.  The question, then, is what happens when the baby is saved.?

    Obviously, the parents of a disabled child face a life transformed in ways they could not have imagined.  It is not all tragedy, but it certainly requires a change in expectations.  It also requires taking responsibility for the child's care: putting aside personal desires and goals to put in the time to give the child what he or she needs.  There is, in fact, a lot of beauty and good in that.

     But I also know that parents of disabled children need a lot of help.  My wife and I are in a relatively fortunate situation - good jobs, flexible time, excellent insurance - and have, I think, been able to care for Aidan rather well.  But we spend a lot of money on a wide variety of equipment and therapists and other things.  We also have had to press back against school districts and insurance companies that try to cut corners and shirk their legal duties for serving the disabled.  I could go on but, trust me, American society - even with the advances of the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) - is not well designed to allow for the full participation of the disabled in society. 

    Nor are we, as a society, doing an adequate job in making sure people have access to health care.  Without insurance, Aidan's life, and our family's life, would be infinitely worse off.  And there are many people with disabilities in America without insurance, without access to sufficient health care.  Some die prematurely, even after having been heroically saved from prematurity.

     And I think some of the problem goes back to the way we respond to problems like prematurity.  Generally, we tend to define such problems in finite, problem-solving terms.  There is an immediate challenge that requires a discrete scientific response.  If baby X has Y condition we must do Z.  And when Z is done, and baby X meets some minimum standard of survival, the problem is "solved."

     Of course, as the new study shows, the problem is not solved, and that is because it was not a discrete, isolated event to begin with.  It was not a specific problem but an on-going process; there is not a particular technological and scientific answer, there must be a continuous social engagement. 

     When we focus on the heroism of an individual doctor saving an individual baby at a particular moment, we lose sight of the larger family and social interactions that will carry forward from that moment.  The technology that enables our interventions, combined with our short-term, individualistic cultural blinders, produces a momentary sense of victory, but deflects our attention from the bigger, perhaps more challenging, long-term commitments required from both family and society.

     On the cultural-philosophical side of things, if we are serious about addressing the needs of disabled children, we need to back off of our self-interested rejection of our collective responsibilities.  If we say, as a society, as I think we do, that we want to save the babies, then we have to, as a society, also say that we will support the kinds of social policies that will help to provide for those babies as they grow, especially those babies born to families that do not have the material resources to provide that care themselves.

     Here, finally, is where Confucius comes in.  Not in that he is an old liberal Democrat ready to revive old New Deal policy commitments.  But because he speaks to us more personally about why we should be willing to give something to those who need it.  Quite simply, he is a constant counter to our selfish impulses, reminding us that we find ourselves not in the pursuit of our personal preferences, but in the fulfillment of the needs of others.  Here he is:

As for Humanity, if you want to make a stand, help others make a stand, and if you want to reach your goal, help others reach their goal.  Consider yourself and treat others accordingly: this is the method of Humanity.

    

Comments

[Laura]

fantastic.

[Andrew Spark]

In my view the disable people need immediate attention. I think we need to create a support network to help them.