V had his J & J vaccine last week. I am relieved and grateful.
How this came about:
As I had written in an earlier post, V’s scheduled vaccine, like millions of others, was cancelled when the Johnson & Johnson shot was paused due to potential health risks. My wonderful cousin S read my post and asked if he could help, mentioning a good friend K who worked at a nearby hospital and might be able to assist us in getting an appointment when the pause ended. I explained our challenges: V won’t keep on a mask, would have a hard time waiting in a line or remaining in a crowded waiting room, and would likely be very anxious about the shot (the reason we needed to have the single dose rather than the two shot options). How could we make this work?
While I was away in Portland, T & K connected and came up with a plan: They (T, V, and V’s home therapist B) would drive to the hospital, where a designated side door would be open for them to enter directly into an exam room where a nurse would be situated to give him his shot.
Everything went as planned and V got his vaccine.
I am so appreciative of my cousin’s thoughtfulness and his friend’s aid, both going above and beyond to help us out. Yet I think, what if this sort of accommodation on a need-by-need basis was the norm? What if organizations and institutions like health care centers and hospitals and drugstores all provided necessary accommodations for people with special needs? What if it didn’t take knowing someone to make it happen? What if there was a number to call, or a designated person in charge of making services more accessible to everyone who needs them?
I know much about this issue as a parent of a severely disabled person, who has made endless calls trying to find out if an event or program would be accessible for us and if not, if any special accommodations could be made for things that the general public wouldn’t even have to think about. For example, V’s current doctor, even pre-pandemic, let us wait in the car until an exam room was available and then would call us to come in because V would get so anxious and at times disruptive in a crowded waiting room. (As simple and easy to institute as it is, most doctors’ offices in my experience are not willing to make basic accommodations like this.)
I also know about this topic as someone who graduated from a program on disability policy and then had a job coordinating disability services for a large organization. I know that it can be complicated and at times expensive to provide everything that everyone needs, yet also that in almost all cases some arrangements can be made to help people out, even if it is not the perfect solution.
While the ADA (Americans with Disabilities Act, enacted in 1990) is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life and is supposed to assure that people with disabilities have the same rights and opportunities as everyone else, there are often lapses.
As with other civil rights protections (on the basis of race, color, sex, national origin, age, and religion) there are lots of hard to enforce forms of discrimination that still occur. For example, inequities in the vaccine rollout have brought attention to the fact that people of color often receive inferior healthcare. In the disability community, there’s a class action lawsuit over the fact that the NYC subway system is supposed to be accessible to those with mobility issues yet elevators are often closed or out of service. In addition to fighting for what they deserve by law, the case is also drawing attention to a problem that others don’t often think about.
That’s the thing about special needs – you don’t think about them unless or until you have them. And because at some point in our lives most of us will have some form of disability, wouldn’t it behoove us all to try to make every place and activity as accessible as possible?
Because the fact is that most of us don’t have the time and energy to pursue legal action every time we don’t get services that are mandated by law. We lodge complaints, seek out other resources, troubleshoot and problem solve as best we can to get what we need. But we don’t want to wage wars and fight for our rights over and over again. We often rely on or hope for the kindness of strangers and suffer the consequences when that basic consideration is absent.
“What do you need and how can I help you?” Those are questions I used to ask in my job, questions that I wish I heard more often. When my cousin reached out to me it felt so heartening because that is basically what he asked. We want others to understand that when people are denied their basic rights we all suffer, because we all deserve to have access to the same resources. Everyone deserves to ride the subway and go to the doctor and be treated with respect. Everyone who wants one should be able to get a shot with whatever accommodations are needed. For now I continue to advocate when I have to, and appreciate when people are willing to lend a hand.