With our teardrops and our toil

“The world turns, but we don’t feel it turning. And then one night you look up and a single spark […]

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“The world turns, but we don’t feel it turning. And then one night you look up and a single spark turns the sky on fire”— “Gangs of New York”

I saw my first Access Press in the doorway of one of my favorite stores, Uncle Hugo’s Science Fiction Bookstore, in the fall of 1996. I had been diagnosed as bipolar decades ago and recently with multiple sclerosis, and other than a couple visits to Gary Schorner’s wonderful Walk-in Clinic, I didn’t have much contact with any of Minnesota’s disability community. I had no idea what was out there.

Access Press was a revelation: programs, activities and news from the capitol about issues that pertained directly to me.  I read it from cover to cover, from Charlie Smith’s commentary to Scott’s editorial cartoon, this thing had it all!

 It excited me, angered me, got me thinking about new connections that we all have, not just those with this situation or that. Finally the newspaper did what so many other things and people had failed to do. It inspired me to get off my couch, stop watching cartoons and drinking wine and get my butt out there doing something. There was a whole new world right there, but my pain, fear, loneliness and despair had blinded me to it, I had been living in a self-imposed exile.

Access Press often described the work of NAMI, (National Alliance on Mental Illness) a grassroots mental heath organization with support groups, speakers, networking between folks – potentially a “family” of other people like me. I wondered if I might have some talent they could use. So I went to see them. NAMI’s legislative advocate, Tom Johnson, truly the hardest working man in the mental health biz, was sitting behind a three-foot stack of papers with his sleeves rolled up and had “miles to go and promises to keep” before going home. Yet he invited me in and gave me some of his precious time. He believed in me, befriended me, found a place for my speaking skills that has now led me to an entirely new career as a national consumer speaker and writer.

That led me to join NAMI’s Board of Directors and from there to the presidency of the NAMI Hennepin County affiliate, and finally president emeritus (whatever that is!).  A member of the board thought enough of me that he hooked me up with Charlie Smith. After an interview, half of which concerned the model, year and modifications of my custom Harley, I was asked to write the monthly mental health column. I continued writing from 1998, through Charlie’s tragic death, into a new day with Tim Benjamin, and right up until 2007 when I lost my eyesight due to multiple sclerosis and other health issues.

Charlie and I became friends, but he also was an incredible teacher, mentor, muse and supporter. He always believed in me and my writing, and my take on the issues and the people I wrote about. He was a great editor and he encouraged me and pushed me. He was my cheerleader and coach combined. I have no doubt that his phone calls on some of my “dark nights of the soul” saved my life. When I debated writing a column, “The Things We Think And Do Not Say,” about the toughest issues that we don’t even talk about to ourselves and each other in the hospitals, Charlie straightened it all out with a single sentence:  “Pete, put your money where your mouth is.”

When Charlie died many wondered if Access Press could go on. That’s when Tim Benjamin stepped in where I never thought anyone could.  Charlie can never be replaced, but Tim, with an incredible absence of ego, took what Charlie did, kept what worked, and set about looking at what didn’t work as well. Tim wasn’t shy about asking the staff our opinions and what we wanted to see happen with the newspaper.

Over the years at Access Press I can not count the number and quality of the writers we’ve had. But to me, one writer who always captured the heart of the Press is the amazing Jeff Nygaard. A bulldog, a gladiator, our champion, and one of the finest writers I’ve ever read.

One of the things that Access Press does is to keep us going, keep us inspired and keep us laughing. The doors we’ve banged our heads against for a century: the government, the insurance companies, the pharmaceutical companies, the medical profession, the police forces, the churches, institutions so large that our knocks weren’t even given the respect of a simple reply. For decades we have measured political success NOT by what they have given us, but by what they haven’t taken away. So many who came before us banged on those doors until they were bloody and broken, for themselves, for love of their children, for hope of change. And all the work we do now is standing on their shoulders, and we must never forget them.

Because of the work of Access Press, hundreds of separate organizations that worked alone, fighting for the same dollar and volunteer time are now working more and more as a team. Working cooperatively is our only chance for the big changes, anything else is a waste of time and resources. And doors are starting to open. Access Press has invited us all to unite as a community, showing how we don’t have to keep reinventing the wheel.

During the tough times when we don’t seem to be making progress for ourselves and our children fast enough, when despair and exhaustion wear us down, Access Press helps us answer the hard questions: Why and how DO we keep fighting for this cause, for equality, for justice, for aid for those of us who suffer most, suffer through no fault of our own, suffer because of biology, our situations, our genes, our families, or our sheer bad luck?

The stories in Access Press give us the answers. They show us that when we quit, burn out, neglect caring for our own mental and physical health, put up our hands and say “no more,” we lose. If we would have withdrawn from the fight, we would not have the breakthroughs in stigma, accessibility, independence, respect, medicine and care. But even more terrible we would still have the inner stigma where we tell ourselves we are toxic, broken or damaged goods.

All we have ever asked for is a fair word or a fair fight: simply equality. We dreamed for it, worked for it, died for it, and now it’s happening.

Maybe us old timers won’t see the day when it will be as normal to say “I’m seeing my psychiatrist” as it would be to say, “I’m seeing my eye doctor.” But it will come. And we will have victory and kindness for those of us who struggle. So many unnamed and unsung heroes gave their all, without recognition, without pay, without even a sign of hope. They have opened up those impenetrable huge doors with their teardrops and their toil.

They will have, by never quitting, by never saying ‘NO”, transformed vanquishment into victory and their heroic never-ending struggles have sown courage into those who have come after them, all of us that will ultimately produce victory.

I remember a phone conversation with Charlie when I couldn’t stand the cruelty and insensitivity that I was seeing while collecting the stories of the brave people that I meet. I had gone through it myself, but seeing it happen to others was far more horrific. I said,

“It never ceases to surprise and amaze me that people who have had the most painful and difficult lives, are able to survive and to do more than survive: to retain an ability to be themselves in all the complexities and contradictions of their identity, history, and feelings, and to be capable still of taking some pleasure in this often cruel and incomprehensible world, and the dignity, grace and hopefulness they display while they endure it. Is it me who is insane because I cannot bear their pain, or are they, because they can?”

Charlie replied: “It doesn’t happen overnight. You can’t save the whole world. But if we can hang onto the idea, the hope, that we can perhaps help just one person, whoever is put in our path today, that’s all, just today. Then we can bring hope to others, maybe they will be inspired, their vision of the world might change, just a little, and they may be compassionate to just one person. And bit by bit, we can see that we are ALL struggling, that we ALL are, sooner or later, going to face the same physical and mental challenges. “And if there is a community out there so people don’t have to feel alone and afraid, that will be our victory.”

Through Access Press, Charlie, Tim, scores of writers, hundreds of volunteers, board members, and all the organizations that work so closely with them, have helped to build a whole community and to inspire others. We are winning the fight, piece by piece. We are creating a community of hope, a reservoir of cooperation, calm, and safety that we can all draw from, to rest a moment, just a moment, before we return to the cause and struggle of hope and help for those of us who have sometimes only dreamed of those things in the privacy of our hearts. A cause we are winning. With our teardrops and our toil.

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Mental Wellness