It's been a while. I've just finished successfully defending my PhD preliminary examination (PhD comps), so this semester has been a bit...hairy. With that done, I'm happy to be writing again on other things. Ironically, or fittingly, I feel drawn to writing about this prelim process.
Those of us with special needs children know that life always goes on. Whether we work in the Academy or corporate America or in any other capacity, there is no pause button and there is no slow-motion option. Our work does not slow down, and frequently our employers won't think twice about giving us special consideration. I've met many talented, brilliant people whose careers have been derailed or put in holding patterns because their workplace does not understand or care about what it really means to have a child with special needs.
Our jobs can consume us.
I experienced this first-hand this past semester. Scrambling to read (and understand) hundreds of books, teach classes, work as an administrator in my department, go to professional conferences, publish, grow professional relationships, avoid alcoholism, be a husband, be a father, be a human.
Things fall apart; the center cannot hold.
I didn't ask for help because I didn't expect it. I didn't even talk about it.
My silence was mine alone and I did not dare break it.
And this was a mistake.
My body broke down. The night before I was to fly to a conference in Boston, I was so violently ill that I blacked out, hitting my head on the bathroom floor. I woke up with my wife standing over me, horrified, as my body tremored on the bathroom floor. I crawled back to the bedroom, terrified not of my own safety, not of my children's lives without a father, not of dying an ignonimous death on a rental property bathroom floor. No. I worried about the professional implications. I worried about the line on my CV that would go missing. I worried about tenure--still 10 years down the line.
A few hours later and I realized: this is fucked up. Something needed to change. I needed to start talking.
And so I did.
I'd like to say that I became a firebrand, shouting Zarathustrian-style about the need for workplace accommodations, nailing 95 theses to the doors of my graduate professors, staging rallies on the university quad. While undeniably awesome to think about, these things did not happen.
Instead, I simply said "no."
I said "no" in a practial sense. I started refusing to take on unnecessary work when others could do it. I ducked out of "optional" social events. I avoided committees.
But I started saying "no" in a deeper sense.
I'm saying "no" to a life of constant anxiety and normativity.
I'm saying "no" to guilt over my needs and the needs of my family.
I'm saying "no" to quietly acquiescing to structures, institutions, ways of living in modern America that don't recognize our shared humanity, our need to support one another.
And I feel a "yes" building...
A "yes" to laughter.
A "yes"to peace.
A "yes" to compassion.
Throughout hundreds of long, long nights, I have sat on my son's bed working while he bounces, hoots, and does anything but than sleep. I have by turns felt smugly superior and bitterly resentful that my peers were able to move through their careers clear-headed, at their leisure and that we would be judged by the same criteria.
But this is sickness, and I need to fight it.
I will fight to change the contours of my silence.
I will fight in my own small way for recognition for parents of special needs children, recognition of the additional struggles--professional, financial, physical, emotional; I will fight those discourses that erase these struggles both within the special needs community and without.
I will fight to listen to other silences. Just as my son's silences are pregnant and full, so too are the silences of everyone around me. I will hammer at the silences between us, especially between fathers. I will tell my friends--my small, quiet community--that I see them and that I hear their silence.
I will tell them that I am proud of them because they hear it from far too few people.
I will open myself and invite them to speak.
I will break my silence not only for them, but for all of us.