I have been having some very challenging spiritual experiences lately. I’ve already been writing about them here. Dare I suggest, however, that living in this world as a young woman with a disability who has the wherewithal and presumption to live out loud regardless of her blindness, is actually more challenging. I had a medical appointment yesterday, which –and I know this is strange– I was looking forward to because it meant getting myself out of the house, into the world, and closer to having dinner with my mom.
When you are blind, there are only a few options you have for traveling over 25 miles. First, you can take public transportation. In my case that would be two hours plus a disorienting stay on a BART platform overlooking a freeway. Alternatively, there is East Bay Paratransit, which takes you door to door. I chose what I supposed was the more sensible option and took the disability service. This was a terrible, terrible mistake.
Now, I have several important values I seek to live by as much as humanly possible. One is to keep my commitments. Another is to arrive on time. A third is to follow through with what I say I’m going to do, be there when I say I will be there, keep appointments, show up when needed or when someone is expecting me to show up. Yesterday I left Berkeley at 2:30 in the afternoon to get to Walnut Creek by 4:40 PM. Two hours and forty minutes later, after picking up five people one of whom didn’t have his fair, after transferring Paratransit cars, and after the gods only know what else was making us travel like snails traversing Mount Everest, I got to the building where I had my appointment. I did not say I got to my appointment, because it was fifteen minutes past closing hour when I walked through the door.
Like any sensible human being, I was irate. Unlike most people I suppose, instead of being angry at a company that had failed *it’s* commitments, I felt like a personal failure because, regardless of the reason, *I* had not made my commitment. . You see, it does not matter to most people in this world why you are late, what your story is, whether you have fewer abilities, more challenges, a crappy childhood, whatever and so forth. What people care about is that you show up on time, you do your work, you act as normal as possible, you respond to everything cheerfully, and you do what you said you would do come hell or high water. I felt like I had been given an unpleasant glimpse of hell, and given the choice I would have settled for the high water because California is going through a pretty bad drought. For the shortcomings of missing my appointment, wasting my day, wasting mine and others’ time, coming across as a flaky and unreliable human being, I blamed myself.
I am writing this account here for two reasons. First, perhaps it is time to cease blaming ourselves, if we have disabilities, for things that are strictly other people’s and agencies’ problems. It is too easy to move on from blaming ourselves for one thing to expanding the blame to all sorts of things whether or not it is rational to do this. We owe it to ourselves to draw a large distinction between our own principles and values and how we do everything in our control to live by them, and the world’s increasing obliviousness to the concept of taking responsibility, and the values of community and connection, especially surrounding services for people who have atypical needs. Secondly, I want to publicly fault a service that is based on inefficient protocols, is not run well (perhaps because no one suspects that people with disabilities are noticing?) and fails to consistently provide the support it purports to offer. In no way do I suspect that I am the only person who has missed something very important because she relied on a service which is ten times less reliable than those services procured for the general nondisabled public. In my opinion such discrepancy constitutes discrimination and confers approval on the hegemony of normalcy. We people with disabilities are made second class citizens in part because the most prosperous country in the world cannot muster up the funds, tolerance, and respect, nor take seriously any policy changes that would reflect tangible adequate solutions, needed to give us equal opportunity.
What if I had been a quadriplegic who could not take BART as the obvious alternative to relying on the unreliable? What if, instead of missing a medical appointment, I instead missed my mother’s funeral? What if I just didn’t get to my best friend’s wedding–sorry. What if I missed the birth of my brother’s baby because Paratransit and it’s affiliates took three hours to go the distance that a car enabled person could travel in 40 minutes? I am lucky that I was the least disabled of anyone on yesterday’s ill fated Paratransit ride. I am lucky that I have family and friends, and I am learning the art of self-forgiveness. Many are not so lucky.
Perhaps my telling this cautionary tale will bring awareness to the general public of just one of the myriad possibilities preventing those with disabilities from showing up for themselves and others in their own lives, being on time, and ensuring as often as possible that the circumstances of their outer worlds match the strong and respectful soul they are inside. Next time your friend with a disability is two hours late, or your coworker with a disability once again fails to come to work on time, make sure to remember compassion and realize that more often than not the world they had to travel through to get to you did not allow the light within them to shine through. Here’s to changing what is, so we can fully become who we’ve always been.