Hello all.
I would like to welcome all of you to our new and updated web site. While I haven't published any newsletters or updated this site in some time, I have continued to serve customers and work with families. I have had the pleasure of conducting several workshops and have started a YouTube channel, which I hope to update as often as I can.
It is ironic that a major impetus for updating and revising my web site has been the current public health crisis affecting the United States and the world at large. The Covid-19 Pandemic has had a wide-ranging and devastating impact on our entire way of life; schools are closed, sporting events, high school and college graduations, weddings, and nearly all gatherings of more than 10 people have been postponed or significantly altered, and 14.7% of people in the United States--more than 23 million Americans--are unemployed.
The current public health crisis, though not completely unprecedented, has impacted our society in a way not seen since the Spanish Flu Pandemic of 1918. Our entire way of life has been upended, and the very fabric of the way we live our lives has been turned on its head--not just in the United States, but globally. The prevailing mood is one of fear, anxiety and uncertainty--and one segment of the population especially hard hit has been people who are Blind and have other disabilities.
Since mid-March, when the effects of the Pandemic on our society became increasingly apparent, I have spoken with numerous people who are Blind concerning their experiences and concerns about the Pandemic. I have also followed efforts by families and community organizations to accommodate people with Autism and other disabilities into their responses to Covid-19 and the ways in which wwe (as people with disabilities) have adapted ourselves to the radical changes in society we have experienced.
Blind students and their families--as well as those with autism and other developmental disabilities common in ONH--have had to fight for accommodations to online distance learning platforms. at a national level, advocacy organizations like the National Federation of the Blind have had to intervene with Congress to preserve the rights of Blind and visually impaired students to a free and appropriate public education in the wake of nearly unprecedented budget shortfalls.
For students with Autism, even basic routines--such as attending school at a specific time, interactions with family members, and access to educational and medical supports have been uprooted and thrown into disarray. Children and adults who are medically complex have experienced significant decreases in access to health care due to the closure of outpatient medical facilities in the wake of the Pandemic.
For those who are Blind or visually impaired, transportation, access to health care and education, and even the basic strategies used to navigate the environment have been altered. For example, how can you tell how far six feet is when you can't see, and you have to make educated guesses about what constitutes proper social distancing when a sighted person can just look at a line of separation at a grocery store? More pressingly, what about finding access to transportation to a health care provider or testing location when most testing for COVID-19 is done in drive through locations, and even basic information and transportation about testing accessible to a Blind person is limited?
As an adult with ONH, the current public health crisis presented me with some unique challenges. I currently live at home with my parents and help take care of my father, who has COPD and some other health issues. He meets every definition of a high risk patient for Covid-19. My mother--who is also in a high risk category--works full time. Her job involves a fair amount of work with the public.
As our governor first moved to cancel a large sporting event and convention near our state capital and then issued his order closing all schools in the state, my anxiety began to mount. What if my parents got sick? What if I started showing symptoms. Will I be able to care for my parents who live with me? Will I be able to stay at home or self-quarantine at another location for 14 days or more?
By mid-March, states like Washington and California were already seeing deaths and large numbers of sick patients from the virus. Life Care Centers, New Rochelle and Diamond Princess were already household words, The first three patients in my state had tested positive, and the numbers of new cases nationwide were increasing exponentially.
On March 11, the day the NBA suspended their season after two players for the Utah Jazz tested positive for Covid-19 and President Donald Trump issued his initial order suspending non-essential travel to and from Europe, I reached out to my insurance carrier, expressing my concerns and asking to speak to a health advocate.
I had evaluated my options, my strengths and weaknesses and formulated a list of questions for the advocate about steps I should take as a Blind person if either my parents or I started showing symptoms. As an adult with ONH, I also have a diagnosis of Generalized Anxiety Disorder and some Autism related characteristics that could enter into play in a health crisis that could involve me caring for and making critical decisions regarding my parents if they were hospitalized.
Two days later, I had a conversation with a health coach from my insurance provider, who was able to allay some of my concerns. She recommended that if I showed symptoms and my health provider determined that I need to be tested for COVID-19, I should explain that I am Blind, do not drive and could expose my parents or community transportation providers to the virus if I need to be taken to a doctor or testing site. More specifically, the health coach recommended that I ask my health provider for ambulatory medical transportation to a doctor's office or testing site. The idea of essentialy being driven to a doctor's appointmen or Covid-19 testing site in an ambulance goes against my grain as a reasonably competent Blind adult, but I soon concluded that sacrificing my own independence could be necessary to keep others around me safe. After all, most of the techniques Blind people use in their daily lives were not developed until after 1940--long after the last similar global pandemic.
I also decided to purchase a monthly subscription to a service called AIRA. AIRA, short for Artificial Intelligence and Remote Access, provides Blind users with information about their environment by linking them with specially trained, sighted agents through the user's smartphone camera.
I purchased the subscription because I knew the service could help me identify my father's medications, locate testing facilities and provide other services in a Pandemic-related crisis with my family.
AIRA can also assist with distance learning, trips to grocery stores, public transportation and other venues, and inaccessible computer applications. So far, I've had agents read graphs and maps depicting Covid-19 cases in my area and an inaccessible invoice from my web developer.
Subscribing to a service like AIRA--which is quite expensive--is not a choice that many Blind people can afford to make. Many others, who have less anxiety or more confidence dealing with uncertainty and crises than I, may not find AIRA necessary or advisable. For me, however, the service represents peace of mind--well worth the expense.
As I mentioned earlier, for me, the key to managing the stress that the current Pandemic has brought on is to have a plan to mitigate it, and this means having contingency plans in place in case I or my parents contract the virus. for many children and adults with ONH, the most effective way to prevent (or at least lessen) sensory overload and potential problem behaviors is knowing what to expect. As someone with ONH, when I know what to expect or have a map for what I'm about to experience, it enables me to do a much better job of coping with it. It does not alleviate my stress--of course--but it usually allows me to focus my energy and develop a strategy to cope with it more effectively. This is the reason why supports like tangible schedules and object calendars that enable a child with ONH to divide their day into a series of manageable routines are generally effective at reducing meltdowns and other negative behaviors associated with transitions.
I will admit that my coping mechanisms are not ideal, and I still experience a lot of anxiety revolving around the Pandemic and its affects on my family; even minor differences in our daily routines can be stressful for me occasionally.
I want to conclude this inaugural posting of our blog by mentioning the YouTube video which is currently embedded on the ONH Consulting home page. The piece, "Destroy the Virus" was recorded by a former client of mine who I consider a dear acquaintance.
Santon was a former client of ONH Consulting, and I had the pleasure of attending one of his performances in 2013. What was especially memorable about that performance was that the person I rode with, a former high school classmate, was also the parent of a son with ONH.
Listening to the piece reminded me deeply of music that I used to compose when I was a small child--before I stopped playing the piano. I still think of such melodies to this day. I often think of these melodies to remember favorite teachers or other adults and memories which I yurn to preserve and repeat. Melodies like this also remind me of grieving for events or relationships that no longer exist or broken. I believe this is Santon's reflection on his experiences with the Covid-19 Pandemic and how he and others can mitigate the fear and anxiety connected with it.
For Santon, and all of us, the peace is a deep-seated commentary on how the current crisis has universally impacted society. Through creative works like this, we cannot necessarily destroy the virus, but we can help mitigate the fear of it.
We hope you enjoyed reading the inaugural issue of our blog. Please give us feedback and let us know if there are any topics you would like us to discuss.
Sincerely,
Christopher Sabine
president
ONH Consulting, LLC