Tormented by Sleep

Tormented by Sleep

“Tormented by Sleep”
Tormented by sleep
As hours tick by
Tormented by sleep
Let out a sigh

Pain is too great
Long to be free
Tormented by sleep
Gaslighting me

Available remedies
None presenting peace
Long for my release
Nightly enemy

Tormented by sleep
Day after day
Tormented by sleep
Take me away.

alone bed bedroom blur
Photo by Pixabay on Pexels.com Image Description: Person flat on stomach in bed. Covered completely by a sheet except feet sticking out.

There’s a lot going on in our world. I hoped to talk about some of it today. However, my body is not cooperating.

Disability is like that. You never know how you will feel.

Today, like many days, I feel bad. This is just part of my story.

All I have today is a poem inspired by near nightly painsomnia but I’m sharing because, if you are struggling with pain of any sort, I want you to know you aren’t alone.

That’s part of my story too.

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

 

Why I Won’t Agree to Disagree But I Will Try to Listen

Why I Won’t Agree to Disagree But I Will Try to Listen

I hear a lot today about agreeing to disagree.

You know, “I see it this way. You see it that way. We’ll just agree to disagree.”

Sorry, I can’t do that. 

As my friend and great social-minded theologian, Samuel Mudge said recently,

“Agreeing to disagree doesn’t work for a whole lot of people because sometimes, two people are discussing something that is an abstract idea to one, and life-and-death to the other.”

Think about that for a second. I’ll use my most personal examples for clarity.

Not having access to plastic straws might kill me.

Doing away with healthcare protections might kill me.

Using mental health or other disabilities as your excuse because you don’t want to talk about guns or other issues might kill me.

That’s how it works.

The same is true when you endorse leaders who overtly or covertly use their power and systems as a means of oppression, exclusion, and hate.

They aren’t all created equal. People are dying! 

I will say this. We do need to listen to each other more.

I do believe most of us are not as far apart as it seems. Outside the top few, the people from the middle down are all being squeezed economically and otherwise.

Let’s work together to answer these more difficult questions. Maybe life isn’t supposed to be completely found in easy answers.

agree agreement ankreuzen arrangement
Photo by Pixabay on Pexels.com

We’ve lost our ability to sit across from each other; to hear each other, and to listen to our individual and collective pain. 

This isn’t a suggestion of mere tolerance. I’ll fight as long as I can against racism, ableism, and any other form of oppression, exclusion, and hate.

Inclusion is a table of equity and justice especially for people on the margins. 

That’s what Jesus’ ministry is all about. He restored people to equitable, just community.

This isn’t an over-simplified version of love the sinner, hate the sin. 

That’s just a slight modification of agreeing to disagree with a dash of power mixed in. That’s what got us here.

It’s just a reminder to listen because the cycle will never stop if we don’t do better. 

I hope you’ll join me.

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

 

 

 

Give Me Liberty, Immigrants, Cripples, and Jesus!

Give Me Liberty, Immigrants, Cripples, and Jesus!

What you believe about the Statue of Liberty, immigration, disability, and our current US administration tells me everything I need to know about how you feel about Jesus and how you feel about me.

There has been a recent change to the immigration policy in the United States. It states that whether a person is admissible to the United States or not will be based on his or her likelihood of becoming a public charge at any time in the future, as set forth in the Immigration and Nationality Act.

The expressed goal is “to ensure that aliens seeking to enter and remain in the United States — either temporarily or permanently — are self-sufficient and rely on their own capabilities and the resources of family members, sponsors, and private organizations rather than on public resources.” 

Great, right?! Except how can you know? Beyond the obvious discrimination of people with disabilities like me, many of whom are fleeing violence, etc., it could be YOU at any time. Becoming disabled can and does happen at ANYONE. Further, if you live long enough you will almost certainly become disabled. Bodies don’t last forever without breaking down.

So, what does this mean? Unless you are super rich and elite, keep out? That’s sure what it seems like. What about Medicare? If you enter the country at a younger age and never need any public assistance, something you cannot know unless you are super rich, will you be eligible later in life? Does this exclude someone from coming to this country too? It’s a moving target.

Quite simply, we are moving toward eugenics. This should scare you into action! 

I know it won’t. I’ve been around nondisabled people long enough to know how little they think beyond their immediate concerns. You just don’t see yourself as me.

This is why we have a long history of locking away our disabled and elderly people. If you don’t see them, you don’t have to believe you will be them. You are wrong!

Speaking of long history, our current US administration recently stated that the words on the Statue of Liberty were for immigrants coming from Europe too.

I know, racism, shocking… Except, you should be shocked! You should be shocked into action against this administration and its policies. You have a voice. Use it!

worms eye view photography of statue of liberty
Photo by Jamie McInall on Pexels.com

Read more on both these things here or just look at the news or use a search engine. If you are uniformed or unshocked, you may be the problem.

Furthermore, any notion that you can support this administration while calling yourself Christian or pro-life is a farce.

(Admittedly, I’m afraid to make this connection not because it is untrue, but because some have used this as justification to say the Church should be charged with charity, healthcare, and supports instead of the government.)

Frankly, you are not just wrong, the Church is pretty bad at these things. Feel free to ask me about accessibility.

That’s just it. These people claim to be Christians yet the sit in direct opposition to Jesus.

In case you haven’t looked in a while, he takes the powerful in this world and turns them, and their systems, upside down. I mean, Jesus literally tells the rich guy to sell all his stuff and give it to the poor. (Matthew 19:21-22)

Look at the Beattitudes (Matthew 5:1-11)

For Christ’s Sake (Literally) The first Christians lived as a commune. (Acts 2:44-47)

Maybe that’s why the Church is dying.

As for the rest of it, what you believe about the Statue of Liberty, immigration, disability, and our current US administration tells me everything I need to know.

Wherever you are this day: Love Accepts You, No Exceptions.

It also seeks justice and inclusion for the people on the margins; even those least like you. Jesus talks about that too.

I’ll let you look it up if you don’t believe me because, “Carry your own weight,” right?

Peace Love and Acceptance

Notes: 1. Uscis.gov, 2. USA Today – 8/13/2019, 3. Biblegateway.com

 

 

 

Are You Hiding Behind Your Smile?

Are You Hiding Behind Your Smile?

“My Sanguine Shell”
Sanguine
Shell
Fake

Pain
Anxiety
Depression
Regression

Rudderless Ship
Assailed by Stormy Seas
Wave Battered
Sinking
No Release

SOS
Drowned
As Smiles Abound.

 

photo of thunderstorm
Photo by Rodrigo Souza on Pexels.com

“And I tell you that you are Peter, and on this rock I will build my church, and the gates of Hades will not overcome it.”Matthew 16:18

Do you ever wonder if others can really see you; not just what’s on the surface but underneath? It probably doesn’t happen most of the time. We’ve become good hiders.

That’s what I love about the dynamics between Jesus and his disciple, Peter.

Peter gets it wrong as much as right. He sinks in water instead of focusing on Jesus. He goes around chopping off ears. Still, Jesus sees and loves him. He sees the possibilities behind the fearful surface Peter exudes.

That’s the heart of God. It does the same for us. It strips away all the coverings of brokenness and finds the good underneath. Yet, I still wrestle with this.

I know God can see me completely, but I still cover it up. Talk about hubris.

I hide my true self from others too. Vulnerability is scary. They won’t accept me if they know my weaknesses.

Except, we all have weaknesses. Some of us might be better at hiding them but we all have weaknesses, fears, insecurities, and shortcomings. So, what if we didn’t hide them?

Maybe we’d all be better off if we were a little more honest with ourselves and each other. Maybe, we could engage in meaningful conversation and begin to break through all our divisions.

I don’t think it’s easy. Being vulnerable might be more difficult for us than building equitable systems and relationships and, frankly, we are pretty bad at both these things.

However, since I have to start somewhere. Maybe this change starts with me.

I hope you’ll join me in building coalitions of love, justice, vulnerability, and equity. In doing so I believe we are truly being faithful disciples of Jesus.

What do you think?

God, you see my heart.
You know my
hurts and pains.
You sit with me in my brokenness and comfort me.
Use me as you will to be open to the hearts of others.
Help me be open too that I might sit with them and together we might know your peace even amidst sadness and uncertainty.
May this be my p
rayer.

Amen. Wherever you are this day: Love Accepts You, No Exceptions.

Justice, Pain, Equity, and Sleep: A Cripple Convergence Story

Justice, Pain, Equity, and Sleep: A Cripple Convergence Story

“Justice”
Judge not.
But, what about justice?
Lord, will there be equity?
How long must we wait,
For heaven’s sake?
Watching others die,
Pain exchanged,
For personal gains.

Reveal your plans,
Here and now,
Let Love transformed,
Become the norm.
Just make it soon.
Can’t you see?
I’m dying too.

inside photography of church
Photo by Adrien Olichon on Pexels.com

Hey Y’all,

I planned to write something else today (and, have it up before now) but, I’m exhausted.

One of the most difficult aspects of chronic pain is that you never know what you’re going to get.

I know I’ve overworked my body recently, which isn’t saying much by nondisabled body standards frankly, but I’m feeling pretty bad. My entire body hurts.

If you are a praying sort, prayers are appreciated.

Positive thoughts are always welcome here. 

Another part of my struggle with chronic pain is what I call painsomnia.

Simply put, that’s insomnia caused by pain and, in case it isn’t clear by now, I don’t sleep much.

So, here I am.

Exhausted and typing for public consumption. There’s probably a law against this somewhere. If it’s in my bedroom, I’ll plead cripple ignorance.

Anyway, I digress…

I know many people have it worse. This is also a frustration of mine.

I think about these things at night while not sleeping.

We live in a world filled with injustice. 

Racism.

People exploiting others for their personal economic gain.

Outright hate.

There’s prejudice of all kinds for many people.

Maybe it’s always existed but it seems worse than in recent memory.

Meanwhile, overtly and covertly, those on top by virtue of privilege are still working to make more, pay less, and take more away from the rest of us. 

Look at healthcare.

The elite are in court right now working to take away the few remaining protections of the Affordable Care Act. (USA) Things like coverage for preexisting conditions.

Social Security and Medicare coming next.

(I feel like I’ve talked about this before, though, I’m too tired to look it up.) 

You don’t have to look too hard to find something happening that will hurt most of us in one way or another in exchange for profits. There are plenty of examples.

Some folks are just marginalized more than others.

That’s intentional. 

If they can keep the fighting focused on the fears of those who have little and those who have less, they win. Divide and conquer.

This strategy is working. They’re on top! 

The disparity between the top and the bottom is growing while the middle is shrinking.

Meanwhile, all I want to do is sleep. But, sleeping is what brought us here.

And, I get frustrated. I want justice now.

I know Love works toward justice.

I just wonder how many people will die waiting for change? 

I wonder, “Will it be me?”

That’s the thing about justice. Prayers are good. Action is better. 

One of the mantras I repeat most often is “God’s Love works most often through our own hands and hearts.”

God doesn’t need me but God can use me.

I’m reminded of Micah 6:8

He has shown you, O mortal, what is good. And what does the Lord require of you? To act justly, to love mercy, and to walk humbly with your God.

So, here I am.

I’m awake anyway.

How about you?

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

A Crip Summer Night’s Dream

A Crip Summer Night’s Dream

This weekend my wife and I performed in a rendition of William Shakespeare’s, A Midsummer Night’s Dream, with Inclusive Theater of WNY.

We had small roles as the fairies Peaseblossom and Moth and, though it will likely take weeks for my body to recover, I’m glad we did it.

There are many microaggressions that accompany disability from hostility to outright exclusion. However, one of the worst is invisibility.

People just don’t expect, see, or know disabled people in traditionally nondisabled places.

For the record, that’s pretty much everywhere.

We just passed the 29th anniversary of the Americans with Disabilities Act. Yet, most of life remains inaccessible. Think about how often you go into places with just one step.

I could list obstacles for days just as a wheelchair user.

Since I’m talking about our play, how many stages are accessible?
(Hint: Not many.)

67464321_414025362790888_5534259570727190528_n
Image: Woman with red hair and blue glasses next to man with dark hair, glasses, and full bead smiling dressed as fairies.

This keeps us isolated and invisible. 

When you don’t meet people different than you in your daily life, you don’t notice they are missing. Moreover, they are often viewed as an inconvenience when you do notice them at all.

Instead of considering the limits of their opportunities you think, “Why do I have to build a ramp?”

This is why relationships and representation matter. You care about people more when you meet and build relationships with them.

Many people I encounter have never truly known a wheelchair user before.

Likewise, if someone never sees another person with whom they identify, they don’t see possibilities.

That’s why I did it.

That’s why I persevered.

That’s what makes waking up in this body aching for recovery worth it.  

Most of all, that’s why I’m grateful for Inclusive Theater and the opportunity it provides.

Plus, I’ve met some really cool people.

Maybe someone saw the show or will read my words and begin imagining for themselves. 

I hope you’ll consider my words too.

I’d be happy if you did.

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

 

Simulation Incomplete

Simulation Incomplete
“Labels”
When you label me,
You negate me,
Your simulation incomplete.
So, clearly,
Please hear me,
As I tell you what I need. 
Inclusion
Acceptance 
To know I am enough. 
In this way, 
Living forward,
What it means to be
God’s love.

The following piece is cross posted in conjunction with my friend, Tim Vermande, who writes at Flying Kitty Monster. His reflections from a recent conversation are below along with this graphic from G. Lake Dylan.
use stairs

My friend, and co-conspirator who wrote the poem above, Chris of Crip Pastor remarked a few days ago while writing about a particular event that he is not trying to join in some “oppression Olympics,” what with so much of nation in an attack mode lately, but to share experience. It is true that even allies don’t often fully understand, but almost everyone can be in solidarity from common roots–as I once said about another group at seminary, we all have an interest in being judged for who we are, not by appearance.

As I read that, my thoughts turned to conversations about disability simulations. In a simulation, limbs are tied to splints, blindfolds worn, or similar measures. The intent is to give a feeling for what it’s like to live with a disability. The idea of giving a feeling is true enough–I once had a class of interior designers try to simply enter a room and reach the wall switch while in a wheelchair. It was an enlightening time.

But it wasn’t complete–it lasted an hour. An hour is not a lifetime (or the time of a life since an injury). After a quite troubled week of access problems, I list some real-life things that a disability simulation will probably never convey:

  • Making a hotel reservation well in advance, confirming it by phone, and arriving to find that the accessible room isn’t available after all.
  • Asking extensively several times at a theatre about wheelchair seating, only to find that you’ve been given inaccurate information, and have to sit by yourself in isolation.
  • Being told that a place is accessible, only to find a step or two when you arrive, and then being told, “well, it’s only a small step.”
  • The exhaustion of taking a 20-minute paratransit trip that picks you up an hour late, takes two hours while the driver crams in a last-minute addition (which takes you past your house twice) and ends up taking more than 2 hours, so you miss dinner and part of your meeting.
  • The time that evaporates as you call ahead, plan ahead, and hope (as noted, sometimes to no avail) for an event.
  • Entering a restaurant in winter, looking forward to eating with friends in a warm atmosphere, you see that there are a lot of open tables, but you are taken to a cramped booth (with fixed seats) next to the take-out door.
  • Being on the upper floor of a hotel when the fire alarm sounds and the elevators shut down.
  • Being on the upper floor of a hotel when the power goes out.
  • Giving your wheelchair to an attendant on an airplane, not knowing if you will ever see it again, if it will get shuffled to the wrong place, or if it will be damaged.
    in case of fire, use stairs -- person in a wheelchair on stairs
  • The look of surprise when someone realizes that, despite some problem here or there, you are an intelligent, functional human being worthy of respect.

  • And finally, the feeling of being alone when you are too exhausted to go out, or left out because of access or transportation problems, or someone hasn’t caught on to the previous item yet.

— Poem by Chris Wylie
— Post by Tim Vermande
— illustration by G. Lake Dylan