Tags: Barton Cutter, communication, daily living, disability, disability self advocacy
Last week, Megan recounted my recent experience with local police & EMS, and those oh so well intentioned folks who inadvertently caused unneccessary mayhem while doing their best to help. In the days since, I have spent countless hours processing and attempting to make sense out of conflicting perspectives on what transpired, many of which exist purely internally.
While I am reconciling my emotions, I have had the opportunity to speak with a member of the EMS team in order to understand the point from which they were orienting from during last week’s events.
Through this conversation, it’s become apparent to me that there was confusion and misunderstanding on all sides in many ways, and in many ways, the EMS who were on the scene did the best they could.
Yet, from a personal perspective, it felt as though that during the intent to disengage my wheelchair, it felt like they were inadvertantly taking my power. As it was only after an hour of attempting to communicate that I needed no help, that I gave in. There’s such a fine line.
I gave in because I was at an impass, but I did not give permission to disengage my chair nor would they let me drive independently.
During the conversation with the supervisor, we came upon a mutual understanding, the result of which was an invitation to serve as a resource and to explore opportunities to collaborate, going out into the community in refining their understanding and practices of assisting people with disabilities.
Tags: Barton Cutter, creative play, disability, disability and arts, disability and humor, disability and love, disability and marriage, disability and relationships, disability and visual arts, fun, inclusive arts, inclusive visual arts, play, vision, wheelchairs
Yesterday, Megan and I got bitten by the bug of our own- inner-playfulness. A beautifully bright November Day, we couldn’t help but be outside, and we got the urge to finally pull out an art project, which had been mulling around in the back of our minds for several months.
The ingredients: two tubes of acrylic paint, one roll of brown construction paper, eight heavy-duty 3’x4’ sheets of paper doubling as canvases, one paint pan, one paintbrush, and most importantly, my power chair.
We cleared off a flat spot in our driveway, taped down the construction paper, and proceeded to paint my front tire, which then, served as my painting instrument of choice as I rolled, paint-filled, across the naked white.
It was a blast!
All those years of my childhood, when I drove through water puddle after water puddle and drew designs on the pavement with the wet of my tracks at once exploded into life with new Technicolor intent. My goal- a perfectly straight track mark impeccably placed upon the white canvas. I would roll into position, tire poised at the edge of the canvas as Megan slapped fresh paint onto my newly retreaded tires. And once adequately covered, I would grab my joystick and mimicking a Zen master drawing an enso circle, let out a deep breath and drew back crossing the crisp white canvas blindly.
Canvas after canvas, Megan and I repeated the process like two kindergartners enthralled with their own finger-painting. How wonderful it is to be married to someone who can throw culture to the wind, and get down and dirty with some good, clean fun!
Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability and visual arts, inclusive arts, inclusive visual arts, Megan Cutter, play, wheelchairs
Our art project actually began several months ago as more of a creative and inspirational art project. We decided to go to the craft store together, and adding on a few more errands, I drove while Barton walked. Once arriving and hearing the “I was almost hit by a semi who jumped the sidewalk” story, I was just a little hesitant at whether or not this was worth it. And I was a little hesitant about whether or not we would find what we needed.
It’s not everyday you hear a customer ask, “If we wanted to paint his wheels to create an imprint- what kind of paper and paint would we use?”
While we relaxed over the Thanksgiving holiday and seeped into the fall sun and leaves, we were both inspired yesterday. As Barton mentioned, we hauled out all our supplies to the driveway, picking the square with the least number of cracks and set out everything we needed. As we prepared our canvas, I saw Barton’s excitement rise to the occasion. He was figuring out the perfect angle, timing and method as I was setting everything off to the side.
We did a test run on brown construction paper, and adjusted our methods accordingly. With each print, we scoured over what was the best section and how it fared in comparison with the others. The wind was blowing, and more than once the canvas blew into me- I had paint on my hands, jeans, and feet. Emerging from setting the print down inside the house, I found Barton, giddy over what the next one would produce.
After a while, we created this dance- Barton would move into his exact spot, I would paint the treads, and he would roll backwards by just a fraction. I could complete the splattering. In one movement, he rolled backwards, we assessed the outcome, I would pull of the tape and hold it so it wouldn’t fly into me, find a spot in the house where the dogs couldn’t reach, and emerge to begin the process again. It was a perfect dance.
On the last print, Barton painted the bottom of my foot with the Indigo ink to include a footprint. He held the paintbrush in his mouth, and I sat on the concrete holding my foot in his lap while he brushed on the ink, cold to my toes. As I added my footprint, I felt the same giddiness as Barton.
This was such a different feeling for me. So much of my life has been serious and in some ways I had been unconsciously taught for it to be filled with work- get a job, manage life and deadlines, it should be serious and feel like work. Blah, blah, bah humbug.
But this was amazing- it felt free, and I felt inspired to write and create. I began to shed the adult shackles of crankiness and live into the play I had so much resisted.
Tags: disability, disability and love, disability and marriage, disability and relationships, interability marriage, martial arts, Megan Cutter, wheelchairs
When Barton and I were in Washington DC at a martial arts training seminar, just after we had gotten engaged, I stood in front of Barton and gave a punch, stopping just in front of him. I did what most people do when they train with Barton, pulling their punches. After chiding me, I gave a realistic attack, and Barton gave a realistic response, which surprised me as I wasn’t expecting an arm bar across his wheelchair nor my foot caught just under his footrest.
I had begun training in martial arts several years prior, and for, it was to navigate the chaos of an ending relationship as well as the death of my mother. I heard about martial arts from a close friend, who just said, “Come and see.” I never thought I would be training. I had grown up with asthma, not able to be as physically exerting as other students my age. After such dramatic losses in my life, I was on survival mode, yet I knew I needed to get back. The first evening I looked at students rolling on the grass at dusk, hitting and punching each other and thought, “What on earth are you doing? You want to do that?”
Training gave me not only the clarity I needed in a very turbulent time, I was also learning how my body worked in different situations, letting go physically as well as emotionally and learning how to stand back up on my own. One of the blackbelts also taught a creative writing series, and so I fell in love with journaling and writing again.
I certainly wasn’t expecting to meet the love of my life while training!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability self advocacy, humor, interability marriage, Megan Cutter, wheelchairs
This weekend- I was deemed a healthy cripple. Yesterday we were at the Flyleaf Poetry Reading and Crafts Showcase sponsored by the NC Poetry Society. For most of the event, I had our car parked across the street to allow more parking for customers. However, near the end, I moved the car back, and parking the accessible parking space to load Barton as well as all our stuff. A man was sitting in his parked car next to be, also in an accessible parking space. As I got out, he called out to me, “Well you look like a healthy cripple.”
You look like a healthy cripple. Fascinating. So I went to get Barton, and we ended up having a discussion out by the car about packing up and what we wanted to do for lunch, and I actually left Barton in the car while I packed the car up. I am sure Barton’s smile and bright eyes disturbed the man, so he actually ended up moving to another spot in the lot.
Now I know that accessible parking places in and of itself is a red hot topic which brings out the passion in most advocates, mainly because it’s taken so long to get and enforce parking for those with disabilities.
But let’s look at this man’s comment deeper, and there are two thoughts which I want to pull out a bit.
The first- you look like a healthy cripple. This was a statement about how I looked, on the outside. Should I have explained to him that it was just my husband who has a disability? Should I mention to him that I have chronic back pain? Or that I have low tone hearing loss which can cause balance issues or even worse that it could actually be MS but I refuse to be tested because my mother died from a reaction to pain medication for MS? I looked fine, but many types of disabilities don’t have anything to do with outward appearance at all. Many experiences don’t have outward exposure either, but can be just as debilitating. Let’s give each other a break once in a while. There are times when we need to push ourselves further than we ever could think we could go, and there are times when we need to nurture and take care of ourselves, give ourselves a perk every once in a while.
The second and possibly more potent- you look like a healthy cripple. The inference that people with disabilities are not supposed to look healthy. They are supposed to be unhealthy. It was one of the reasons why I wanted to bring Barton out and have a conversation with him where this man could overhear. Barton, whose muscles don’t work the way he would like them to, is extremely healthy. He doesn’t have cooties. If you could slow down and take the time, you would realize that Barton knows more than you or I. That he’s incredibly funny, and it’s not just his contagious smile. It’s everything underneath.
A long time ago, my martial arts sensei told me a story about Barton. Barton was in a sweat lodge, and there were two boys sitting next to him complaining. Barton bent over, and said, “You can lean on me.”
Breaking through the illusion that you have to be unhealthy to have a disability or be defined by the disability will take a long time to shift. As a society, we are just now coming around to the fact that those with disabilities have just as much, or more, to offer than those without.
How do we begin to shift the paradigm? To let go about our assumptions of how a person with a disability should be, should look or should behave.
At one time or another, we will all be healthy cripples.
Tags: community, daily living, disability and love, disability and marriage, disability and relationships, household chores, interability marriage, Megan Cutter, wheelchairs
This weekend, we took the plunge- we had a no-hole fix-it repair weekend. We have always laughed about the holes and dents in the drywall from Barton’s wheelchair. Every one has a story behind them and trust me we keep count of who makes each dent and hole in the hallway- a source of constant chiding, but it was time to repair the damage.
What a whirlwind of an afternoon, and we were so grateful to have help, as I couldn’t have done these projects alone. From taking the doorframe off to the office, spackling dents and dings in the hallway and bedroom, installing a new smoke alarm, yard work, installing a new blind, painting little items here and there, tacking up installation that had fallen under the house, we crossed off a number of repair items that had been on the list for quite a while.
Afterwards, as Barton and I crashed on the sofa, we felt as though we had just had an Extreme Makeover Day, and we had. These were projects that were on the list, but so many other priorities have taken precedence. Especially as we have been shifting the focus of our vision and mission, moving into new areas of work and exploring new possibilities. Yet, going back to take care of these items is necessary, and part not only of home-ownership, but of preventing future damage and cost.
So often, you hear the term work-life balance. How do you balance all of these aspects to our lives- work, family, home, volunteer/service, relaxation and rest? I haven’t quite figured it out yet, but I love how poet David Whyte talks about these aspects of our lives in conversation with one or another. It’s not either or, but rather how they overlap and interweave throughout our lives.
What I loved about our no-hole repair day was not that it was just marking items off a list, but that it brought pieces of our community together. We met new neighbors and spent a lot of time getting to know them, we laughed with other neighbors about inside stories they knew, and we reconnected with a family we had not seen in a while. A little boy and girl helped me carry brush out to a pile we made in the yard teaching them about helping others, and there were extra pairs of hands accomplishing items we could not have done alone.
What can we accomplish with the help of others? I’ve been known to have an, “I can do…” attitude, which on one hand is important to be determined and persevere, but on the other leaves out the potential to succeed as a communal effort. Community is important, and I’ve found that there are different communities for different parts of my life.
This ties directly in with finding a support system or network, which can be found in a variety of places- neighborhood, spiritual or religious based, organizationally or interest-based. It’s easy to say, “I’m so alone. No one has been here, done this, experienced this…” Yet, in this day, we all have experienced the changes due to volatile economic times, we all in one time of our lives or another will experience a loss or tragedy, as well as the joy of success.
What do you need to accomplish with an extra-pair of hands? Gather some friends together, tell them what you need and see what the possibilities are. You may be amazed at what can happen.
Tags: Barton Cutter, disability and relationships, disability self advocacy, disabled self defense, humor, interability marriage, self defense for people with disabilities
What a night Saturday was! I certainly did not expect to be shifting from engaging in a casual conversation with someone at the bar to making sure he couldn’t do damage to anyone in the crowd, least of all himself. It just happened to work out that way for some reason.
Those who know us are aware that a village pub isn’t exactly what we would consider a typical hangout but since our friends were playing we thought it would be a nice change of pace. When we got there it was nearing 11 and a number of patrons had clearly already had their share to drink. After we got settled at the front of the bar, close to where the band was set up, a man close to me struck up a conversation.
At first I found this interesting as it was clear that despite his blood/alcohol level, there was some genuine interest in talking. After all, I suppose it’s not every day that you see two guys in wheelchairs roll into a bar. I was open to chatting and was pretty impressed at how well he understood me. As he began to talk more, it became apparent that he needed someone to listen and I was happy to do so since I saw this as a healthier option for him than pouring more alcohol on top of his troubles. Soon, however, it was obvious that things were beginning to shift.
As soon as he turned back to his buddies, he downed another beer before trying to reengage. This happened several times, and with each, he became increasingly dangerous to himself and those around him. I was done. It was clear that he had no interest in the opportunity I was offering. He began to stumble aimlessly trying to get others to dance with him. As he began knocking into others, including those on stage, I began creating distance between him and where we were sitting in order to protect Megan and our two friends. In a final attempt to engage us, he extended his hand over my head to ask Megan to dance. Realizing that Megan did not fully grasp what he was asking in the moment, I playfully interrupted the line he was extending by gently redirecting his arm, and intent, with a friendly nudge and glance.
While this ended his attempts to engage with us directly, he was still way off kilter and on the verge of toppling over. From where we sat, however, our friends could not safely navigate to an exit and so my next task was to keep them from being trampled upon. By the end of the show, the guy’s friends had contained him somewhat. And that, combined with my capacity to serve as designated linebacker allowed us to open a safe path to the door for our friends.
Tags: disability, disability and love, disability and marriage, disability and relationships, disabled defense, disabled protection, disabled self defense, interability marriage, Megan Cutter, wheelchairs
Last Saturday, Barton and I went out for a night on the town with dinner with our friends, Sloan & Wendy & we heard our friends of The Chris Hendricks Band play at a local bar. It was great to be out as Barton & I had been working really hard the week before & it’s nice to hang out.
As the night went on, a couple of people in the place had a bit too much to drink; they were pretty plastered. One guy kept coming up to me & Barton, which was fine because he was harmless, but he kept asking me to dance. It was funny the first time, not so much after that. I was sitting behind Barton & Barton became a barrier between the chaos on the sidelines & Sloan, Wendy and I. Barton’s concern was that this guy was going to fall back into our friends playing, but he also wanted to protect our little corner.
I’m not sure if the band members saw Barton block the guy’s hand as he reached over for me or if they saw his feet keeping him from coming any closer.
When I talk about Barton & I, how met training in martial arts, the first question that people have is, “How can Barton train in martial arts, in a wheelchair?”
I asked that question, too- on our first time trained together. And I do what everyone does the first time they train with Barton- pull the punch. What does that mean? It means I didn’t give Barton a realistic attack. If there’s not a realistic attack, Barton can’t give a realistic response. Finally, after chiding me, I gave a realistic punch, and he barred my arm & used some unexpected defense techniques.
While in the movies, martial arts can be big and showy, high kicks and complicated maneuvers may not be effective in a realistic situation. In training with Barton, it’s not so much what you do see and more of what you don’t see. Barton plays with angles, timing and distance in addition to all of the fun and pointy parts of his wheelchair. Whether he’s driving his motor wheelchair or in his manual one, it doesn’t matter.
There are down sides- hence our “No hole Fixer Up” Party on Sunday, where a few friends will help us repair the house from the holes in the walls from Barton’s wheelchair (Peace vs War Speeds). I can’t say all of the dents are Barton’s fault.
Tags: daily living, disability, disability and love, disability and marriage, disability and relationships, interability marriage, vision, wheelchairs, Work, writing
Before we left for Chicago, I had been working on changing the paradigm of assigning value to every-day tasks and long-terms goals. I had gotten so frustrated because I could get all of the daily tasks- things due right now completed. Yet, I wasn’t able to touch those long-term projects and goals that would lead me to where I truly want to go. So the week we left for Chicago, I began the day with one task from my long-term goal pile, and found that I actually got more done during the day because I was excited, motivated and in the flow.
Yet when we returned, I struggled to rein my email in and get back on track to complete what was currently due. I also played with how I created my to-do list realized that I needed a tangible list because there are too many things for my memory banks to hold, but I needed a better way to organize those tasks and let go of using the task-list to measure my self-worth. Have you ever had a list and written something you’ve already done so you could immediately cross it off?
Barton had an even more difficult task to let go and live into the flow of his week- his wheelchair is literally in pieces. The parts-on-order list is long- back tires, joints that the tires are attached to, front tires, battery, footrest. To make matters worse- we had to wait to clear insurance and get a “prescription” from his physician, which created more delays. The pieces of metal that allow the tire to turn correctly were completely broken leading Barton to fight his wheelchair just to turn a corner in the house, dragging everything with him including the carpet.
Tuesday evening I came home to Barton lying on the floor, out of his wheelchair with our three dogs licking his face. His frustration was clear, as his wheelchair had gotten caught on the rug, and when he looked to see how to get uncaught, he lost balance and fell out of his chair. Now, he’s taken his motor wheelchair to martial arts training and has practiced falling out of his chair, and was able to roll even with his head pointer on. But he lost valuable time on a project he was working on.
The crescendo happened on Friday when he was walking home from a meeting- the entire cover of the right wheel had come off, like a semi-truck losing rubber on the tires. His wheelchair would only go in circles, and he called me two blocks from the house, stuck. It would have been funny if it wasn’t 100-degrees outside. He had already called the wheelchair repair guys- an emergency call, partly to make a point that he wasn’t kidding, he needed those parts asap.
I was headed to Durham for a round-table discussion, but was running late due to a morning meeting, but I am so thankful I did not head out of town. I stayed with Barton while we waited for the wheelchair repairman, partly so that our neighbors would know Barton was okay (he had even had a policewoman stop & try to push his wheelchair along)!
Challenges like this can create havoc on the creative flow- how do you recover from spending half the day outside stuck in 100-degree heat, exhausted, frustrated and angry? Over the weekend, we both worked on our different projects, and it was so wonderful to be able to bounce off of each other, encourage each other to keep going, and it helped sustain the flow.
Tags: disability and humor, disability and love, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter, wheelchairs
Yesterday I came home and it was clear that the room had been rearranged. The rug had been moved, not just a couple of inches, but clear across the room. The table with files on top had been moved vertically with several piles of movies on top. Our two dogs and new puppy lie on the sofa, all in a row, exhausted, with guilty looks on their faces. And Barton was tipped back in his wheelchair just cattycorner- the doggie gate strewn across the kitchen floor.
Okay- and what happened here? And Barton smiles. The wheelchair repairman had been here, and like a comedy of errors, the dogs had started barking as he went to the front door to ring the doorbell. Barton’s wheels got stuck on the rug, hence dragging it clear across the room. Once Barton got his chair unstuck, the repairman had come to the backdoor, and Barton knocked the doggie gate off in the kitchen. I wonder what the wheelchair repairman must of thought- he knows our crazy antics pretty well, so it would be nothing new.
It was like the time where I came home from an overnight out-of-town trip and Barton was “supposed” to be watching the dogs. When I walked up the ramp, I knew disaster had struck as Bear and Basho had ripped apart a bed comforter and had strewn stuffing all over the porch and living room. Thinking that something tragic had happened, I ran to the office, where Barton was working on his computer, completely oblivious to the disaster that lay just outside.
Or when I came from to find the office doorframe literally sideways. Hmm. We’ve banged ripped nails back into the wall, pulled splinters of wood off, and finally Barton just ripped one side clear off.
As Barton told me the comedic story, I picked up the remaining pieces, moved the rug and furniture back to their original places, and spent a good fifteen minutes pondering how to put the doggie gate back together. Later, I would find a piece of wood, in the kitchen, ripped from the door frame.
I’ve gotten used to coming home to find pieces of wood dislodged from their original place. It is the consequence of having a home too small for a motorized wheelchair. We still haven’t repaired the dents in the hallway. But, it is a home well lived and well loved.