‘Where’s your cane, Pastor?” Her tone was reprimanding as she watched me struggle down the stairs holding tightly onto the railing.
“It’s in the car, Jeredene,” I replied.
“Stubborn,” she said with her hands on her hips. “You’re just stubborn.”
“Yes, mother,” was what I wanted to say, but didn’t.
I didn’t say anything because Jeredene was right about two things.
First, I should have been using my cane.
And second, I was stubborn.
Here’s the context of that short exchange. Ten years earlier, I had been diagnosed with a neurological disorder called Primary Lateral Sclerosis which resulted in muscle stiffness, bad balance and slurred speech. PLS is progressive, meaning it gradually gets worse. I am now using a walker to get around.
For those of us who have disabilities July 26 is the second independence day we celebrate this month because it is the day on which the Americans with Disabilities Act (ADA) was signed into law in 1990. Like the Emancipation Proclamation in 1863 and the Civil Rights Act of 1964, which took necessary but not sufficient steps toward racial equality, the ADA has allowed me and the 26 percent of the population with a disability (CDC statistic) to enter into the life of our community more fully than before, but many physical and attitudinal barriers remain.
The more my disorder progresses and the more I’m around other persons with disabilities, the more I find myself using words like stubborn, feisty, dogged, determined, bold, activist, assertive and — here’s the best one — obstreperous to describe their character traits. People with disabilities are not just surviving but thriving.
It’s often said that Black folks in our country have to go 12 yards to get a first down. Absolutely true. I’m white, but do you know how long it takes me and my walker to go 10 yards? Even with white privilege clearing the way? And even with that undeserved privilege, how often do you think I would gain those 10 yards in the rough and tumble of real life?
So I’m grateful for the increased independence that ADA has given me, but I think everyone in the disability community would agree with me that a large amount of “obstreperosity” is needed to become as independent as possible.
How would you respond if at the age of 50, you were diagnosed with a disorder that would eventually put you in a wheelchair?
Or, to make it even more personal, how are you reacting to the ways the virus has “disabled” you and almost everyone else in one way or another — loss of health, loss of a job, loss of a business, loss of loved ones, loss of freedom to move around, fear of the unknown?
I think hanging around the disability community would give you clues regarding how to live fully even when some of our abilities have been “dissed.”
One clue is that independence is an illusion. The Progress Center for Independent Living should be rebranded the Progress Center for Living as Independently as Possible. Larry Biondi, for example, was born with cerebral palsy and is confined to an electric wheelchair. He can’t even eat without the help of his personal assistant. But Larry is obstreperously doing the work of advocating for people with disabilities, even to the extent of going down to Springfield to lobby legislators to pass laws that treat his community with justice.
Every person with a disability has to confront two things. First is to accept the reality that I am a victim of forces beyond my control. That bad things happen to good people. That there often is no answer to the question, “Why me?” That there is a randomness to life that has no logic.
Second is to get to the point where I no longer think of myself as a victim even though I am one. That’s what mentors of youth on the West Side keep telling me. “These kids,” they stress, “need to move away from a victim mentality and begin believing they have some responsibility for, and control of, their lives.”
Call it obstreperosity or whatever you want. It is, I think, a spiritual thing that can’t be learned from a self-help book. I have learned it in large part from the disability community, and I have to daily relearn it if I want to live fully. I have to get off my pity pot and take as much responsibility for my life as I can.
That said, I have to learn from the 12 Steps program, that as much as forces greater than myself are responsible for some of my suffering, other powers greater than myself are able to not only heal me but also support me in a new way of living that is neither independent nor dependent but interdependent — a combination of “lean on me, brother, when you need a hand” and being as responsible for my life as I can.
The Progress Center’s website declares they embrace a philosophy that all people have the potential to exercise individual self-determination and have the right and opportunity to pursue a course of action, the freedom to fail, and the freedom to learn from their failures just as nondisabled people do.
Happy Independence Day!