What do we want for our children? Happiness, good health, independence, loving partners, good jobs, a nice home and a long life, right? Sure, some of us may want even more -- for our kids to be famous or rich, for our kids to provide us with grandchildren, for our kids to take care of us, etc. Fine. But most of us will be satisfied with the first list, and we will and do work hard as parents to launch our children towards those goals.
"It Takes A Village" is in many corners no longer the mantra for raising children, or for anything in these Tea Party times, frankly. The new motto is "personal responsibility." In other words, we alone are responsible for making our beds and what we do in them (as long as it's heterosexual, of course). Many life improvement programs focus on identifying "unmade beds" and motivating us to change our behaviors to improve our outcomes. Where have I stumbled in the past, and how can I act differently to move to a brighter future? This method promotes an optimistic outlook and supports the idea of second chances in life. We fall, we get up, we learn, we move up. It's all up to us.
But -- yes, there's a "but" -- despite the proclamations of the "I don't want my resources to help others, let them help themselves" advocates, there are some significant exceptions. Young children are one -- a group which is limited in what its members can do for themselves. Another is the world of disability -- the purgatory of injury and illness. And yes, I chose that word, because despite the stories of heroism and joy we hear from its universe of challenges, it is a vulnerable world that needs, and demands, the infrastructure and support we have provided to date as an enlightened society.
As many of my essay readers know, I have a 19-year-old severely mentally retarded daughter who cannot walk or talk, or feed herself or use the toilet. We care for her, give her her meals, and change her diapers at home. Our expenses are significant, and we are grateful for the respite care provided by her local Regional Center (a state-funded support organization for children and adults with disabilities), as well as the special education programs in her local public school system that are teaching Stacy to bear weight on her legs in a standing position and hold a cup and spoon. We have sacrificed our health and our savings to give Stacy the best life possible in our house, and dread the day we will no longer be able to handle her needs and must explore her placement in a group home. Those of you with empathy and compassion will smile gently and commend us for our dedication and love, perhaps mingling a hint of pity with a wave of relief that you are not walking in our shoes. Those of you without will absent yourselves by saying that our family's challenges are entirely our responsibility; as we chose to have a child, so must we bear the costs of her and our suffering.
And therein lies the "but." A decade ago, Stacy's orthopedist looked at the non-disabled in the waiting room and dubbed them "the temporarily able-bodied." There is a feast of "Food for Thought" in that phrase because, in truth, all of us are "temporarily able-bodied." At some point in our lives, whether through illness, injury or age, we will no longer be able to maintain our level of physical, and possibly mental, function and will need assistance or care. If we are fortunate enough to have this change occur after a lifetime that has allowed us to earn enough money to pay for these services, great. If not -- if we are young, a victim of an accident or struck by a disease -- we're out of luck. Without the safety net of health insurance and disability services, a misfortune could quickly become a death sentence.
The question hovers: Aren't you responsible for your fate? Why did you allow yourself to become obese? Why did you speed on your motorcycle or dive into the shallow waters? Why didn't you use sunscreen? Why didn't you follow your O.B.'s instructions?
Well, it so happens, in our personal example, that we did. And not just the routine instructions for promoting a healthy pregnancy, such as keeping up doctor's appointments and doing the ordered tests, no alcohol and no smoking (I never smoked, anyway). No caffeine, no sushi, healthy eating, avoiding stress, resting when I'm told to rest, avoiding unwanted weight gain. Whatever we knew to do to enhance Stacy's prenatal health in 1991, my husband and I did. But, despite our efforts, the placenta clotted, the O.B. missed it and Stacy suffered oxygen deprivation and severe brain damage. We made our bed with the corners tight, and it spontaneously combusted. Unable to get an attorney to represent us before an arbitration panel of judges who were expected to consider the placental infarction a biological misfortune rather than malpractice, we were left without recourses in civil courts or resources to care for our little girl. It wasn't our fault, and there was nothing we could do after the fact to give Stacy a pragmatic "second chance".
A colleague, losing his father prematurely from cancer, adopted an ideal lifestyle in his teens -- healthy eating, daily exercise, vigilant check-ups. Despite his efforts, he too got cancer in his 50s and was able to briefly extend his short life because he had work-provided health insurance. A friend was a passenger in a car (with her seat belt on) that was hit by an uninsured driver. She has been in a wheelchair for over 30 years. There are so many stories of people who have, through no fault of their own, lost their able-bodied status and have needed help. So in answer to the question of personal responsibility: No, while we can reduce our risks, we cannot abolish them completely. And each and every one of us is vulnerable to risks every single day. If our "number comes up," we may each need that societal safety net, and it is critical that it be maintained for us all, especially those of us who are not wealthy.
States all across the country are facing serious budget deficits and looking to cut services wherever possible. Prominent targets, unfortunately, are services for the disabled -- a group that is a minority and, faced with daily survival challenges, is unlikely to present an organized advocacy movement that can offset the anti-tax, pro-defense political action coalitions. Hundreds of thousands of our most needy and most vulnerable citizens, many who cannot live independently or work productively will find their group homes, institutions, day care, in-home support services and living assistance decimated. In California, for example, projected cuts include (with lost Federal matching funds) 20 percent of the state's Department of Developmental Services budget and a $1.7 billion slash to the Medicaid budget that includes disability services support. The last thirty years have seen our mentally ill thrown onto the streets to shiver behind their shopping carts and beg for money to buy food. Will we see our disabled Americans meet the same fate?
The ancient Spartans used to take infants thought to be sickly and weak and leave them in the forest to die. Will we, as a society, descend to sentencing those with severe illness, injury or disabilities to exile and an early death? Those who advocate for such a course should remember that the "them" whose lifelines they are slicing could be, through the vagaries of fate, "us" someday.
Nancy Altman and Eric Kingson: Honoring the Man Who Saved Social Security
Hector E. Sanchez: Strong Social Security Is Central to the Latino Community's Future
Richard C. Senelick, M.D.: Is Your Physician Your Advocate?
Hillary St. Pierre: I Considered A "Medicaid Divorce" When Cancer Began Bankrupting Me
Disability.gov: Connecting the Disability Community to Information ...
Disability in America - Institute of Medicine
Disability and Ability - America.gov
The Future Of Disability In America
Ready.gov: People with Disabilities and Other Access and ...
Following that line of reasoning, the disabled must have been singled out for God's punishment as well.
Must be nice to pass judgment on the misfortunes of others, from the comfort of a luxurious setting.
Luck never even enters into the equation....... until it's bad luck......... and it's your own.
With guards and tons of security .
It's all part of the conservative "Road" map for America's Future.
Since the rest of the world will be outside ...fending for themselves-
Roaming bands of armed human raptors living outside the walls of the Wealthy Republican strongholds
Taking whatever is left.
The sick will not last.
By then if you are a Republican "insider" you will be lucky indeed.
Dem "outsiders" .... eat their young.