Too long to wait!

A Sense of Belonging -- Submitted April 1, 2020 to the Winston-Salem Journal

The heartening Covid-19 human responses we see across the media are inspiring.  Though generally a short book end to the horrendous “news” calamity, they give us hope.  From mask-makers and Samaritan food deliveries to the human connection of online churches, they are such a contrast to failed leadership, greed, and especially the tragedy of an unseen killer.  The vignettes of caring are but a small antidote to being homebound, out of work, disabled without staff, and terrified.

I wrote recently about the Registry of Unmet Needs, pointing out inadequate funding of essential services for the 14,000 disabled waiting for services in North Carolina.  I’ve been struck by the guilt I feel during this time of world-wide peril.  

The unmet needs of people with disabilities sounds like “unmet wants” in comparison.  But why? It begs a closer look. For years the cry has been for inclusion, in school, in the workplace, in the community.  In fact, it is not about inclusion, but belonging.

If the deaths now forecast are pre-determined by hospital and ventilator priority lists, people with disabilities and their rights must be part of the discussion.  And, this belonging must be weighed alongside the bail outs for cruise ships and entertainment tycoons and the work force which support both sides of the human and economic dilemma.  Direct Care Providers can’t work from home. They don’t get combat pay, insurance or a living wage. If the disabled and their support systems weren’t perceived as second class citizens, they would be included in the relief packages.  They would be at the table.

The notion of viral pandemics has been anticipated and studied for years by medical and military scientists.  That’s why we have federal panels and commissions, FEMA, and supply warehouses. In fact, chemical and viral pandemics were top concerns signaled by the National Security Council in their 59 page report in 2016.

So what is the priority for us as a society?  How do we treat the “least among us” – who today may find a virus test, healthcare provider, or ventilator inaccessible?  How do we deal with an uninformed or compromised politician or a national media whose profits are driven by sensationalism?

We need the Monarchs and the Bayadas and Disability Advocates represented during  this next relief cycle as much as we need the General Motors and Boeings. We need the Direct Service Provider as much as Rosie the Riveter.  “Political distancing” needs to stop.   

The  “Registry of Unmet Needs” is a euphemism for political expediency.  The next round of relief needs to belong to everyone. If I had a grandparent or loved one with the virus, I would be terrified.  Why wouldn’t I feel the same for my son or daughter with a life-long circumstance that was forever clouding their future?  

I recall an old country song by Glen Yarbrough, called “Rose.”    A long series of personal tragedies befall poor Rose, who one spring lost her arm in a corn-picker.  Like other increasingly painful turns in her life, she’d still burst out in his plaintive chorus, singing, “That’s OK, Rose would say, don’t’ ya  worry hon, we’ll have good times by and by…. next fall when the works all done.”

People with disabilities don’t have good and bad seasons, they have a lifetime of challenges.  They don’t take patient turns at our resources and care, they have birthrights and federal laws.  They need to be among the voices that speak to our next wave of national relief. Tell your representatives in Washington and Raleigh today how you feel about belonging in our country.

by Dr. William R. Donohue

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