To my people in the disabled community and to the friends and family who support us…

Greetings. 

The school season has begun – with all of its attendant anxiety. New teachers, new rhythms, and (hopefully) a few new friends.

This year feels different, though, doesn’t it? I’m feeling a chillier vibe, even as we paint on a smile and get the obligatory first-day picture.

One after another, policy decisions from the government and a slowly growing permission structure for cultural exclusion have fallen on our community. Like artillery rounds in a combat zone, stories in the news and stories from friends mired in frustrating experiences keep coming in. 

I will list just a few:

• The dismantling of the Department of Education – especially the Office of Special Education and Rehabilitative Services that protected our kids’ educational rights.
• H. R. 1, which removes over $900 Billion from Medicaid. The full force of that legislation will not take effect until after the midterm elections.
• The Justice Department’s policy change to no longer pursue enforcement of the Olmstead Decision of the Supreme Court. Olmstead is the “third leg” of the legal stool along with the ADA and IDEA that protects the rights of the entire disabled community in the U.S.
• Voices on social media speak out of their limited or misinformed perspectives to millions of followers. Many times, their words make life harder for our kids. I wrote recently on one instance. 
• Closer to home, embattled and under-resourced school administrators fail to address basic safety issues for our students.

There are many who are speaking and writing on these issues far more articulately than me. And while I could add my voice to that chorus, my concern is in another direction.

What do we, the parents and families of disabled people most need to hear?

We know these injustices are hard on our community. But what is an appropriate and life-giving response to the seemingly growing target on our kids’ backs?

What follows is a call to resist the corrosive forces of this world we find ourselves in – and a hopeful path toward something new and better. 

Let’s start with a counterintuitive challenge:

Above all, we will not be afraid.

I get that a charge like that can feel trite or even insensitive in a moment like this. But it’s never been more important. 

A smart wartime adversary knows that the first task in battle is eroding the morale of the enemy. War veterans note that the troops held in reserve watching the battle were more likely to lose heart and break ranks than soldiers in the heat of combat.

The policy moves by this administration have left many of us pretty rattled and looking for someone to blame for our tweaky nerves. But in truth, our adversary is not the people who think or vote differently. It’s not even the folks who work in any given political administration or institution. 

Our real enemy is Fear. 

Fear keeps us reactive, irrational, less open to critical introspection, and less able to look outside of ourselves and into the intrinsic humanity of others – despite our disagreements. Demonization does not work. That is what got us the mess in which we find ourselves.

Even worse, Fear can turn the unthinkable into the plausible – perhaps even the necessary. Because scared people (including us) can do silly things.

In the end, Fear makes us less of who we were designed to be. Less human.

But what do we do with all of this anxiety?

Most have heard of the Fight, Flight or Freeze responses to Fear. I’ve experienced all three at one time or another. In those moments, sometimes God makes way into the fog of terror; and a little clarity for the way forward grows.

When we are frozen into Inaction, we will choose Conviction

Fueled by social media and a 24 hour news cycle, Outrage achieved light speed ten or so years ago and is only accelerating. I have to admit, the “flood the zone“ strategy for political change has been diabolically effective – especially when it’s employed to dismantle long-standing institutions that we have come to count on.

I was processing this with a friend and advisor not long ago. He offered some sage advice:

“Don’t spend too much time ruminating on the ‘why’. It keeps you immobile. Ask the ‘what.’ What to do in response”

The unrelenting ferocity of unwanted change can sometimes leave us paralyzed in a churn of despair, barely able to function. At that moment, we have a decision to make: Sink into despair or Act.

Most often, a small, positive act within the bounds of our agency can break the churn and start a chain of positive action. But that small act needs the fuel of conviction to spring into life.

I believe that the world is better because our kids are in it. 

I believe that our kids have contributions to make to the world. Those contributions don’t always show up on a balance sheet, but are critical to humanity’s flourishing.

And because of those convictions, I believe that our kids are worth our advocacy – even when we’re tired.

In the end, you are what fuels me. I’ve found that if I am feeling a little blue about the state of the world, chances are a few of my fellow travelers are as well. So to lift them out of their funk, I act.

I post a little quote, or share a happy Julia story of a small win from the day. Hopefully, you see it. And maybe the persuadable folks on the periphery see it as well. 

This isn’t the saccharine of false positivity. It can be small, but it has to be real. When I have no encouraging story to share, I acknowledge the little stories of joy shared by others. And in so doing, I toss a bit of kindling on the embers of another. 

And the warmth grows. 

When we want to Fight, we will choose Humility

I have to be more introspective on this one; because I’ll be the first to admit that I have missed the mark on this at times in the past. 

It’s so easy to throw out that snarky, “mic-drop” comment. Ahh… that little shot of dopamine is so satisfying. And in the moment, I’m sure it’s going to put that disagreeable person in their place.

It doesn’t. And to quote Seth Godin, 

“It’s fun to say the perfect thing at the perfect time. Mic drop. The problem is that then you have to bend over and pick up the microphone. Conversations take more effort but tend to be worth it.”

I have to regularly remind myself of three things… 

I don’t have a fully orbed perspective on much. I have only mine. And though my perspective matters, it’s limited.

The person on the other side of the argument lives and breathes and has exactly the same intrinsic value in the eyes of our Creator as anyone else. 

And I can be just as susceptible to selfishness, tribalism, and other general stupidity as anyone else.

Friends, say “no” to the impulse to drop a hot take that only contributes to our collective rage. 

Take a beat, try to articulate the other side’s best argument in your head, find the words that will communicate your thoughts in the most charitable way possible, and deliver. Hopefully, it will resonate with more and alienate as few as possible.

Pro Tip: Have the conversation in real life with someone you respect, but disagree with. You’ll not regret it.

When we want to Run Away, we will choose Rest

Philosopher Timothy Keller once observed, “Because the world is full of ugly things, we need the Sabbath to feed our soul with beauty.“

No one can have the conversations that we do, advocate the way we do, or love the way we do on an empty tank. 

Jocelyn and I, with support from our family hanging with Julia, just came back from our first long weekend away from it all in thirteen years. “Long overdue” is the understatement of the century.

So take a breath… Take another…

1. Three second inhale through the nose…
2. One second “topping it off”…
3. Four second exhale – letting out a sigh.
4. Repeat at least five times

Offload your news and social media apps if you need to. Make a call to that supportive friend. If you don’t have a friend or two on speed dial that you can safely freak out with, GET ONE. 

You will find no better support than among the network of families with disabilities. Hell – call me if you need to. Just know that you are not alone.

Tish Harrison Warren in her latest book described three choices when we experience adversity:

Numb Out, Flame Out, or Go Deep.

Isolation, numbing and doomscrolling are not the answer. Blowing up your life and the lives of others is clearly not the answer. Face to face (or at least voice to voice) connection with another safe human being is the answer.

In all things, we will choose Joy

Out of our rested, humble and convicted souls, we will overflow beauty into the Fear. Our steely optimism in the face of adversity will invite others out of Fear and into the experience of real community and so, so many benefits not reflected on a balance sheet or a 401k.

I have long been encouraged by the writings of C. S. Lewis. One letter he wrote especially buoyed me up this summer after hearing of the fresh hell regarding the Olmstead Decision. He laid down a challenge to a woman just at the beginning of her spiritual journey:

“You are being steered by another: you’ve only got to row – and therefore the future journey is behind your back… You needn’t keep looking over your shoulder too often. Keep your eye on the helmsman, keep your conscience bright and your brain clear and believe that you are in good hands.”

That picture settled into my bones at exactly the time I needed it. It was as if Ultimate Good was telling me that I belong, Julia belongs and we will all be okay. 

But keep rowing. 

How do I respond to those occasional feelings of futility in the face of the crushing cultural forces that seek to marginalize my kid? 

Kindness. 

I choose being kind in the face of unkindness – and encouraging others to do the same. And by the way, I need your encouragement as well. It’s a hard, but ultimately fulfilling way to live.

When an administration expects rage, I do my best to offer relentlessly kind and persistent advocacy. It’s actually kind of fun to watch their perplexed responses to my kindness. I offer it to all as an act of faith that small wins accumulate and are ultimately more powerful than a larger win gained through contentiousness debate. 

I may be a fool for wanting to believe that all will ultimately be well; but that is the strange fuel I rely on to do the small, good, unselfish things that continues a beautiful resistance movement. And it’s a hell of a lot more compelling and inclusive than pure, unrefined grievance.

There are many worthwhile things that the world calls foolish. In the end, I would rather believe and act out of an uncertain, but optimistic future than remain mired in the acidic frustration of the present moment. 

This is my act of quiet obedience to that beautiful future; and at the same time, my act of stubborn resistance against the forces of brutishness and self-centeredness of the present.

Much love to you all.