(image from istockphoto.com of some round blue shapes with blue protuberances floating on a blue background.)
And so this is a pandemic.
Before it actually happened, when people talked about quarantining in your home, I honestly thought that it would mean a week or two, three at the very most, of hanging out with my mom and watching movies and taking walks. I never imagined that schools would be canceled for the rest of the year, or the church would be closed. I never imagined the library wouldn’t be there as a resource, or that I would be rationing the last lot I took out like a slowly dwindling supply of a precious commodity.
I never imagined it, but it has been many weeks now and much to my surprise, I am doing it. I am doing it, and keeping on with the doing.
And it is hard – I am not denying that it is hard. But it is also familiar in its hardness. My entire life has changed, yes, but it has also not changed. I am still doing difficult things, I am just doing difficult things in a different way. Shopping and cooking and leisure time and schedules and meetings, everything is different, and everything is hard. But what surprises me about the pandemic is learning that for so many people, the intricacy and adversity that we face in our lives is new. Because it is not new for me, and it is not new, I would guess, for the majority of disabled people.
In a world which at the best of times gives few natural advantages to people with disabilities, it is at this worst of times that I am coming to realize an advantage to everything that I’ve been cultivating, unconsciously, since birth.
The difficulties that we face now are not things that I find any easier to deal with than a nondisabled person. What they are is more familiar. They are problems they faced before, and so I know that I can get over them.
Things like not being able to go to the places you want, or do the stuff you want to do.
Not seeing family for the sake of preserving your health, or because the environment where a gathering is being held is inaccessible to you.
Not finding what you need at the grocery store.
Being confined, by expectations and by other people and by physical barriers, and asked to do things that seem impossible. How are you expected to dig a hole with a plastic spoon, when everybody else has a shovel?
Being unable to explain to kids what is going on. Seeing other people view you with suspicion, or stare at you in public. (Now those who cough in public understand what those with physical disabilities face every single time they venture out in public.)
Being asked to create entirely new ways of existing every day, all while dealing with bodies and minds – both your own and others – that just want to hunker down and sleep.
Finding it hard to get ahold of medical professionals, spending hours on hold, being told that what you want is unreasonable and unrealistic.
Spending way too much time on electronics and not enough time doing other stuff.
Even the experience of watching people we love get very sick and die because the entire system of US health care is so damn fucked up – of fighting for your own life and knowing that your survival was beyond your own ability and you needed help that you just couldn’t get – of throwing whatever the hell you can at any given situation and hoping, hoping, hoping that maybe just maybe something will work –
Well. We’ve been there, is all.
And believe it or not, we are still there, only now we’ve added the virus stress and so you’re all down here in this hole with us and HEY.
It really, really, really fucking sucks, doesn’t it?
It really does.
You probably expected something inspiring, hey? I got nothing. Only I think it’s funny that some people totally expect disabled people and will you to be wise sages right now and most everyone is just like, heeeeey how much chocolate can I eat before I have to consider the effect the caffeine has on my meds.
Life is hard. Life will continue to be hard. I will continue to use the skills that I’ve developed to deal with my disabilities over the years to deal with, well, let’s call them “the new and interesting ways” that some of my disabilities are currently manifesting. I will continue going to therapy and doctors appointments (by phone and video), talking to my friends (by text and video chat), exercising when I can (by myself, alone, outside, wearing a mask) and trying desperately to find things to replace the gigantic holes left in my heart by this social distancing thing. My state will likely be one of the last to reopen, as we are still accelerating in our number of cases, and our rules are getting more strict, not less. But as in all things in my life, I keep on keeping on. It is all I have ever done. It is all that I ever can do.