Do You Hear What I Hear?

Like many parents during this holiday season, I recently attended a Christmas pageant that included my daughter. My 26 year old daughter. Stacy is a happy, giggly, beautiful young woman, who is also profoundly intellectually disabled. During my first pregnancy, in my mid-thirties, in which I diligently avoided sushi, caffeine, and overexertion, my placenta clotted, cutting off oxygen and nutrition necessary for Stacy’s growth. Unfortunately, my UCLA Clinical Faculty obstetrician in Santa Monica, CA, despite monitoring us weekly, missed noting the severe intrauterine growth restriction. At 36 weeks, he told me the ultrasound showed Stacy was 6 pounds. The next day, she was born at 3 pounds 13 ounces. And our journey began.

Stacy lived with us for 22 years, but, when our own aging meant we would no longer be able to lift her, bathe her, change her, and care for her as she deserved, we began the difficult process of finding a residential setting close to our home that would meet her care needs. The counselor who coordinated our conservatorship encouraged the difficult decision for Stacy’s benefit, advising us that, since Stacy would likely outlive us, it would be best to help her transition to a home with friendly peers and capable caregivers while we were still able to be active and supportive in her life.

The search for Stacy’s new house was edifying. California currently has a wonderful infrastructure to provide a humanitarian environment for individuals who are differently abled. Though some group homes were merely clean and safe, others shone as havens in which residents were encouraged to flourish by kind and caring staff. We chose such a home, where Stacy could build warm friendships among her roommates and her caregivers. And, nearby, we found an adult day program that shared the philosophy of physical activity, music, art, and a diverse community to provide the attendees with a fuller life and the opportunity for joy. As we sang carols from around the world along with our children and their aides at this week’s pageant, I was filled with gratitude for a state and a society, unlike others in our historical past, that value every life.

Alas, this human right to the fullest life possible does not come cheaply. State and federal funding such as Social Security provide the resources to support the opportunities for our citizens unable to provide for themselves or live independently. Unfortunately, acquaintances of ours who, for example, are childless, or have neuro-typical children, have expressed the viewpoint that they feel burdened having their tax dollars support families less fortunate. This sentiment is couched in a “bootstrap” mentality, which blames victims who cannot “pull themselves up”, and sees them as unworthy of compassion or assistance. But, as Stacy’s orthopedist once told us, “All of us are temporarily able-bodied”. Or, as a nurse colleague related, “God distributes ‘stuff happens’ from heaven, but the mail of misfortune floats down to Earth randomly and lands in all our yards at some point in our lives.” For some families or people, the “stuff” arrives early in life; for others later. But, if we are blessed enough to live a long life, we will all face “stuff”—and that is when we most need the safety net of a caring community and a civilized society.

Since the 80s, it has become “hip” (read, acceptable) to be “selfish”. To say or think “I’ve been lucky, so I’m not going to empathize or contribute, even just a little” to help others not so fortunate. Certainly, this philosophy has been the modus operandi of the “1%” and their acolytes in Washington and state capitals; individuals who have failed to appreciate the leg up that society has provided them and continues to do so in the guise of programs such as bailouts and corporate welfare. Billionaires have clearly isolated themselves in their “monkeyspheres”, but the blinders can also be found in the besieged middle class, in which some individuals see no reason to advocate for causes that do not touch their universe personally.

But, it is up to all of us to advocate for those, like Stacy’s classmates and friends, who cannot speak. Cuts to Social Security, Medicaid, and Medicare would not only negatively impact millions of Americans who face poverty, homelessness, and starvation, but could lead to the abandonment and death of hundreds of thousands of citizens with disabilities who need our support to survive. The Nazi regime of the last century had labeled the disabled as unfit, and had implemented waves of euthanasia as a public health policy. We must ensure that such genocides are never repeated in our own country by restructuring our social contracts under the guise of “blaming the victims”. If we intend to label ourselves a developed society, we must continue to provide for all our members, or risk sliding onto the “slippery slope” of an alarming historical past.

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