|Cartoon image of the author's son at age five in hospital. |
Posted with permission of the subject
Credit Kerima Cevik
Despite the surge of COVID-19 cases in New York, Governor Cuomo has issued an executive order that all hospitals allow partners to be with their significant others during the birth of their children. I am asking myself why the governors of all US states and territories haven't issued similar executive orders allowing one parent to be with nonspeaking autistic and disabled offspring with complex support needs should that patient contract COVID-19 and need hospitalization. Is it because they consider our loved ones expendable?
They aren't. My son and the thousands of children and adults like him have the right to survive this pandemic too. And since disabilities that include verbal communication challenges hinder his ability to advocate for his own life should he become infected with the virus, it is my job as his parent to be there with him.
I realize the magnitude and consequences of what I am asking. I do not even know, as the number of patients rises if my son would receive treatment. His right and my right to it is being debated as I type this. But if God forbid he contract this novel coronavirus and become so ill that he needs hospitalization I cannot allow him to fight for his life without one of us by his side to make certain he is not discarded because he's disabled. I have had a good life. I am willing to pay the cost to be with him, even if that cost is my own life.
I watched doctors on social media make some pretty unreasonable excuses for why such denial of care decisions are necessary. Yet we know a 103-year-old woman from Wuhan survived the virus. Meaning blanket decisions not to treat any high-risk population-based upon presumptions they won't survive is cruel and inappropriate at best. Our information about this virus, even how it is transmitted is sparse and inconsistent even after four months of heartbreaking attempts to stop the spread of it. Should my son pay with his life for the failure to prepare for this pandemic?
I am disappointed and angry at the lack of any visible response to these public displays of ableism. With the exception of ASAN, Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), The Arc of the United States (The Arc), the Center for Public Representation, and the Bazelon Center for Mental Health Law, no major autism-related organization has acted to defend the right of our loved ones to treatment. I saw immediate and loud protests from parents about public school response to autistic student's IEP requirements being inadequate. I saw parents having meltdowns about not having access to respite care, therapists, and support staff. I have not seen one word from parents who have managed to get their education-related complaints in major newspapers and on television about their autistic children's right to access COVID-19 testing, treatment, and their right to survive. That lack of interest actually scares me.
There must be other parents and primary care providers asking what will happen to their children if they contract the virus? Has no one else asked why no parent-driven autism organization is coming forward with emergency planning advice for how a single father or mother will manage if they get infected? Does no one lose sleep over the nightmare scenario of watching them wheel patients to isolation wards, and those patients never seeing their loved ones again?
I have been asking myself things like what should our community be doing to focus attention on the equal right of autistic people to access testing and health care for the duration of the pandemic? What will the greater disability justice community be doing to find ways of opening spaces for our loved ones to access health support for conditions requiring health support unrelated to COVID-19?
My last and greatest concern is access to family therapy for families with autistic children who seem to be struggling to manage their offspring at home full time. This may not be an issue for families like mine who have been home educating for years. But in families who spend very little quality time with their autistic children between school, aftercare, therapies, and spring camps, the shock to both the autistic children and their parents is taking its toll. In normal circumstances, the number of filicides is too much. This added stressor may make things that much worse. Judging from the rise in domestic violence in France since stay at home orders were given my concern that similar harm may come to autistic children and those forced to shelter in place with families that have immediately begun complaining about them being themselves seem valid.
I love my son. I want to be more hopeful about my son's chances to weather this pandemic and survive. That can only happen if our community comes together in greater numbers to champion our autistic loved ones right to survive it. Their survival is much more critical at this moment than just about everything else happening right now. Shouldn't autism organizations be putting that first?