I've often found that the words you write are less important than ones left behind.
Yesterday evening, as the Republican-controlled Senate attempted to ram through a 400-page, vastly unbalanced tax reform bill, I furiously tapped out a Tweet that wouldn't be sent. It begins, “I'm concerned spectacle isn't enough,” before continuing to discuss recent moments of spectacle in my life.
I thought the spectacle is a young man falling to the pavement while trying to cross the street with crutches would be enough for my insurance and doctors to help me obtain better mobility aids. It wasn't.
I thought sharing a raw narrative of disability as my condition worsened would inform the thoughts of friends where health care reform was concerned. It didn't.
Instead, these moments formed the foundation of a new relationship with the concept of spectacle as activism.
Earlier in the day, my senator, Michael Bennet of Colorado, delivered a passionate message on the Senate floor. “Colleagues of mine have said for years, ‘this is all about getting to cuts to Medicare, Social Security, and Medicaid.” “I'd say, ‘no, it's not; people care about this, they want to sort out our fiscal condition.’ I was wrong.”
As Democrats shared lists of amendments offered by lobbyists, and later in the day edits of the bill, arriving at their desks with roughly photocopied ink in the margins, they were also relying on the impact of spectacle. I can only hope calls flooded in, but at 1:51 am eastern, in the dead of night, I learned none of made any difference.
What have I learned from this exercise?
Placing the spotlight on human suffering doesn't seem to work the way it once did.
I want to be less angry. But to be awake and present in these times is, in some part, to be angry. The moment that we accept this reality as what should be, we forfeit all power.
This year has been terrifying for all survivors, myself included. In emotional turmoil, I'd swear off politically charged writing every few months only to wake up finding no other choice but pouring my anger onto the page.
As the culture war plays out in our public square, a fight rages on in me, too. I'm trapped, believing that technology is the great equalizer, allowing disabled individuals to achieve what we could not before, and yet I feel betrayed by an industry resistant to change.
In light of recent events, many state legislatures are reverting to paper ballots. The problem? Paper ballots are far less accessible. As a technologist, I reject the popular opinion that we can't design a secure digital voting system. I'm often raising my voice alone.
The internet's technological armies move with speed and precision. Consider this: if the front page of Reddit can be flooded with posts supporting net-neutrality so much that it becomes next day's headline news — what could a similar movement do for the civil rights of disabled Americans?
Future entries in this journal will likely take a different tone. Not because my worldview is shifting yet again, but because I would like to be heard.
For now, keep your passion alive. Channel that anger you feel now into support for organizations like ADAPT, who will continue fighting for the rights of disabled Americans regardless of who is in office. Call, write, and march, if you're able. Reach out to disabled friends and let them know you're there to learn and help.
You must thoroughly vet all candidates, even those labeled as “progressives” often leave issues where disability is concerned out in the cold. Let's not forget, The Democrats only issued a statement of support for the Disability Integration Act on November 30, thanks in large part to the actions of ADAPT. As of this writing, the names of several democratic co-sponsors still appear on the civil-rights stripping H.R. 620.
If you're an abled ally who wants to engage but doesn't know how, ask. I'm grateful for the support of anyone who earnestly desires to join the cause and do the work.
I mentioned in a comment that the Republicans’ post-tax changes to public healthcare services would likely cause a number of my friends to die young, even though it was possible for them to live happy, productive lives. I hope you realize that every one of us on the spectrum of chronic illness is still fighting in our own way. Even if I go silent for a time, I'm still pushing back against a system that hurts me and will eventually harm us all.
If you want to be brave, stand alongside us.