Tags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, Ink in the Wheels: Stories to Make Love Roll, Megan Cutter, writing
We’re excited to be publishing our memoir Ink in the Wheels: Stories to Make Love Roll, to be released February 2013! This project has been five years in the making. Originally, we were going to write our story just after we were married, but in the eight years of our marriage, we’ve learned many lessons about inter-ability marriage that are vital in the discussion of independence for those with disabilities with themes that include our own story, family dynamics, intimacy, finances and work, and losing faith in each other and ourselves- and finding it again.
Check out our new website here:
You can watch our book trailer here!
Tags: disability and love, disability and marriage, disability and relationships, interability marriage, Megan Cutter, vision
We’ve had a busy few months! After getting home from Hawaii, both Barton and I went into work overdrive, partially to try to deal all of the house repair we’ve had this summer (from the foundation of our house, air conditioner and our water heater breaking). We’ve had some major overhaul of our work, and the time of writing and editing our manuscript has taken nearly taken up every weekend.
In the midst of changing schedules, workloads and new responsibilities, we’ve been hard pressed to find any down time. And yet downtime has been so important to keep us going, so we can come back and be ever more focused.
We try to have one day each weekend as a crash day, and I’ve tried to be more forgiving when I don’t get all of the work done over the weekend. I’ve had to let go of having everything be perfect all of the time.
But what really helps us is making sure we stay connected. On Friday nights, we go out- I ride in Barton’s lap as we go to a nearby restaurant, and afterwards we watch a band play at a local music night. It becomes a way to end the week, and a time for us to reconnect without all of the conversations purely about logistics, work or the book. We try to finish all of the half-conversations we’ve had during the week, process all the new changes and dream about what’s coming up ahead.
Over the past few years, we both have worked on refining parts of ourselves that needed to be cared for. For example, one childhood pattern that I had fallen into was anytime I felt scared, about anything- even something positive, it would express itself as frustration. And it impacted Barton & I in that anytime I was faced with something I didn’t know, resistance would pop up. Of course Barton would react to that, and then we’d have a cycle going, no fun.
Looking at the emotions behind frustration or resistance, and working on the ability to show the genuine emotion more, then Barton can come in, and we can work from a place of trust rather than bouncing off each other. Barton has done the same thing in looking at difference places within himself.
By caring for ourselves individually, we can come together better as a couple. We don’t have it figured out all of the time, but coming from a place of vulnerability creates trust and respect, and we have found it leads to a deeper love and laughter that makes life much more fun!
This past weekend, while we didn’t edit the book, we did take time to reconnect as a couple, something we really needed. And then, we go back into the fray, with new challenges for the week, but also a vision that somehow makes it all flow.
Tags: disability, disability and love, disability and marriage, disability and relationships, interability marriage, Megan Cutter, travel and disability
We’ve received many questions about our trip to HI- where did we visit, why did we go, how did we get around, is Hawaii accessible? When we found out that Barton’s uncle passed away earlier this year, we knew there was talk of a family reunion in Hawaii. We had dreams of lazing by the ocean sipping Pina Coladas and Margaritas. However, when we found out that Barton’s contract would be frozen and with all of the uncertainty that goes along with that, we put off our dreams. We assumed we would either know if his contract was being renewed and be celebrating or if we would be closing up our house and finding another way of life.
Yet, the uncertainty remained as Barton’s contract was extended for a few more months, but not yet fully renewed either. In the mean time, we put our feet to work to discover new work opportunities. So our focus shifted from a full vacation or what we expected the summer to look like to family sustainability.
Barton’s family hosted us for an amazing week of adventure, renewal and relaxation, and one of Barton’s best buddies hosted us for two weekends in Honolulu also full of fun and adventure. We are so appreciative of our family and friends who gave us the time we needed to step back, take a breath of fresh air and relax.
With all of the external craziness we experienced with finding new work, a major house repair, losing AC and Barton’s 24-hour bug, we literally packed the day before we left. As exhausted as we were, we were still too excited to sleep on the plane.
As soon as we arrived, we were met with lays, beautiful and fitting for each of us. The next day we went to Pearl Harbor, so close to July 4th, it was a day of honoring those who served our country and lost their lives. Both Barton and I were deeply moved. Later, we enjoyed meeting new friends and hanging out.
We also visited the Veterans Memorial on Punchbowl. We found the elevator wouldn’t work to go to the top of the memorial. Grounds staff came, and an amazing thing happened. While they couldn’t fix the elevator, they took us all over the grounds in their golf cart. It was an amazing gesture, and over and over we would talk about how gracious their staff was to us.
On the Island of Hawaii (the Big Island) we spent time with family, a memorial service on the water, relaxing by the pool, laughing and telling stories over dinner. We did find that the property on the resort was so big that we did have to walk quite a long ways from one place to another. So it wasn’t as accessible as we would have liked. It took us until mid-week to really decompress from all of the mayhem that we had left behind at home.
One day, we took a helicopter ride over the East Ridge of one of the only active volcanoes in Hawaii. At the summit, a rainbow appeared beside the crest with steaming smoke. Both of us were so excited.
Arriving back in Honolulu, we had a completely different experience, equally fabulous, walking the streets in Waikiki, a drive to the north shore beaches, the best food and pastries one could ever ask for. It was a weekend of pure indulgence and delight.
Sadly, the day before we left our trainer called to let us know Basho, one of our dogs had died naturally during our vacation. The ride home was one of sorrow, and sleep. And yet, we were still marveling at the adventures we had had while we were away.
Tags: community safety, disability, disability and marriage, disability and relationships, disability misconceptions, interability marriage, Megan Cutter, misperceptions and disability, views on disability
Have you ever heard of the expression, “Good intentions can lead to hell” or “The world is full of well intentioned fools?”
When I met Barton, I was one of them. We were washing dishes, and I talked down to Barton in my sweet Southern voice. Until a friend took me aside, “Do you have a problem with Barton. You are patronizing him. He has been through all the training you have, and more. Don’t patronize him.” From then on, I have seen Barton just as I would any other guy, one who holds his own, and is very capable of making decisions. Now, I tend to forget about this veil, until it is thrown back in our faces, that is.
Barton and I were just at the point of recovering from our hell week that Barton mentioned in our previous blog, and we had a fabulous week in Hawaii, though came home grieving the loss of our dog Basho while we were away. We were getting our footing this week, feeling positive, energized and focused.
Barton had a meeting, and was driving his motor wheelchair along side a busy road close to our home. The joystick to his wheelchair came off, and flew into the busy road. He stopped a woman to help him get it, but the woman obviously had her own story in her head, assumed Barton was in distress or had mental difficulties and called the Raleigh Police Department and the local EMS.
What ensued was outrageous. Barton tried as hard has could to speak, but was so flustered and upset this woman had actually called the police, all he could say was, “I’m fine.”Unfortunately, in excitable situations, Barton’s speech is even more slurred. He was not given the time or space to explain that it was not a big deal, he just needed someone to pick up the joystick, put it on so he could be on his way.
Barton was not listened to by anyone, not understood, not respected, and he was not given a choice to leave.
The local EMS was even worse, and if we had grounds, we would sue them. They tried to take control of his motor wheelchair by putting it in neutral, demanded to walk him to his destination. One EMS staff even told him, “If you die, and WRAL gets a hold of this, it will ruin our reputation.” The EMS tried to disable the motor on his wheelchair, a piece of equipment that costs over $30,000. Not only that, but Barton’s motor wheelchair is his only means of independence, and here, they were disabling his freedom and independence as a man.
Ironically, Barton and I do so much to educate inclusion awareness, inclusion leadership training for organizations, personal empowerment and community safety. In fact, in just a few weeks, we will be teaching a self-defense program called DisAbled Protection to Bridge II Sports participants.
Later, as we began debriefing the situation, Barton talked about how much energy he spent just trying to be seen as a man, a person. We tend to compartmentalize people into categories and boxes, according to what we think we know. So what happens when we have a situation we don’t know? Especially for the police community, who are trained to see people as needing help or needing to be stopped from harming others. There are victims and bad guys. Many people see Barton as a victim, someone who needs to be cared for. They don’t see him a capable, resourceful and whole, which sadly they miss out on the wonderful personality and gifts that he has to offer the world.
Unfortunately, there is just about no way to speak to and educate the woman who called the police, about what really was going on. Barton feels bad because if the police officers had actually listened to him and understood the situation, they would have had a good laugh at how silly this woman was. And he feels bad that they were taken away from their job, of helping those in real need.
And instead of laughing at how absurd this woman was or the situation was, Barton came home upset, angry and saying, “What do you do when the whole world doesn’t think or treat you like a man.”
And sadly, there are no answers.
Tags: communication, disability and love, disability and marriage, disability and relationships, Megan Cutter
Barton and I had one of the roughest weeks in a while, unraveling a mess of an issue. And while I can’t go into the specifics & detail for privacy reasons, what I do want to share is how people perceive us, and what can happen with that perception.
When we meet people for the first time, we are greeted by messages of ‘intentional’ support. I am told, “You are so good for marrying him, what you do for him is wonderful, you make him so happy.”
Normally we receive a burst of excitement with the opportunity to share another perspective to burst some of these myths.
And we give a perspective that people rarely see. They don’t know the times when Barton picks dinner up for us because I’ve had an exhausting day or when he takes work off my hands or when we kiss. And we delight in the chance to share our story, to break down barriers. It’s why we do what we do.
But this was different. This was someone who potentially had shape over how a couple with a disability was shown in public. And while we didn’t say what we needed to up front, it was something we just couldn’t let go.
This wasn’t the first time someone in the disability field gave a contradictory message. One of my first experiences with a disability organization was the president telling a member of my family that I should not marry Barton- it would be too hard and the issues for a couple with a disability couldn’t be overcome. And issue after issue was brought up to me- housing, care, transportation…. Sadly, this shaped the way my family received Barton, and it wasn’t until much later that Barton was seen for the brilliant person he is.
All because one person, who didn’t know us, told us it would be too hard. Is it hard? Sometimes, yes. Is any relationship hard? Yes- and I’d love to see one that was completely perfect. Is it worth it- beyond anything I could have ever imagined. And if I had listened to this person and had not married Barton, my life would be so empty. I can’t even think about where or who I would be.
And so with the issues that came up this last week, I just couldn’t stand by with my mouth shut. For our own personal empowerment, but more so for many other people who are affected by these false perspectives.
It’s one thing for when our book comes out for someone to disagree or write about their perspective, or make a comment on our story (which I admit, I am a bit nervous about). But it’s another to have our own perspective twisted into a way that patronizes either one of us. And so over the course of a very emotional week, we have been taking steps to correct this.
(my words with some omissions for privacy concerns)
I know when we walked around, you mentioned that Barton was so happy because of his beautiful wife who takes care of him. Ironically, this is a perspective we work very hard to change. I didn’t marry Barton to take care of him and he was happy before we met. I think the pictures of us are ok to use, but I wanted to make sure the portrayal of an inter-ability relationship was more accurate. I think if you had sat down to talk with us and asked us what shots would be appropriate for a couple, you would have realized the difference of perspectives we hope to share with the public.
Tags: daily living, disability and love, disability and marriage, disability and relationships, gratitude, interability marriage, Megan Cutter, vision
We might be a dorky couple, but every night after we get into bed, we cuddle for a few minutes and tell each other our thank you list out loud. Usually we take turns of who goes first- Barton always remembers who went the night before. Many times our thank you list is full of what happened that day, something meaningful, big and sometimes small. We thank God in times of doubt, each other for where we are in our relationship or those who have come to support us on our journey.
There are times when we’ve had a day- you know, the kind of day that smacks you like a truck and you’d rather hide underneath the covers than crawl out of bed to face whatever disaster is going to hit or so overwhelming it’s like you can’t breathe. Or we’ve gotten under each other’s skin, those little irritations puckering up like a blister just waiting to be popped. These are the days when our thank you might be a one-sentence statement.
“I’m thankful to be alive… Your turn.”
And at first, it might seem like a cop out, but this is a powerful, powerful statement.
This week I found out a young man I grew up with, who lived just a couple of doors down from my father’s house passed away after a stroke earlier in the month.
Sunday is Mother’s Day, and I always post a picture in my mother’s memory on Facebook and take time during the day to honor her in my own special way. After her death 10 years ago, I experienced a tangible fear about dying in the middle of the night, and once this experience passed, I found myself walking with personal epiphanies seeping out, about living, and how utterly amazing life is. Our bodies are living, breathing universes.
Being alive is a miracle in the scheme of things. And lying under the covers, wrapping my arms around someone I love is heavenly, even in times of fear or heartache.
No matter what happens during the day- the greatest high or the worst possible day, our thankful list grounds me, it puts brackets on the day. It helps me not to forget all of the minute moments that we so often skip over- that word or phrase that someone says, how a certain experience impacted us, the smell of rain, a dream from the night before.
And this thank you list brings me back to what is so important to me, to us. It’s not about what I got done or didn’t get done- the successes and failures will melt into the background. We are awakened in this reflection, and yet we must lie these moments down to awaken to a new morning, a new time.
What’s on your thank you list?
Tags: disability and love, disability and marriage, disability and relationships, Ink in the Wheels: Stories to Make Love Roll, interability marriage, Megan Cutter, vision, Work, writing
In a recent email, our editor wrote:
“I have to say that the story you are both sharing is courageous, by which I am drawing on the etymological meaning of the word. As you probably know, the word courage comes from the French word couer, meaning heart, so to have courage means to have heart or take heart. In that sense, your love story is overflowing with heart and has a tremendous amount of courage as well.”
We received edits for our manuscript a few weeks ago, and the process of revision is painstakingly slow. Barton and I sit down together with the printed version and comments, going back and forth to debate phrases and words, adding dialogue and details we missed in our first full draft.
We are thankful to have an editor so thorough, honest and light-hearted (on the same wavelength as Barton’s humor for sure). We know that her comments will make our story better, and we are frustrated only with the slow pace editing as taken.
We cringed at the thought of a full rewrite for several chapters, not because of the work now ahead of us, but because we realized we were holding back, for a very specific reason- we wanted to protect others and we wanted to protect ourselves. We knew it, our editor knew it, and if you read it in its current state, so would you. What does it take, to go to the core, the real core?
Ink in the Wheels: Stories to Make Love Roll is our story, and the amazing thing is there are pieces that even our families don’t know about. It’s not on purpose- it’s just that our lives have been so full, it’s hard to get all the different details in.
For example, when asked about our engagement, we look at each other and smile. We will tell you about my going to retrieve the book of poetry, completely missing the ring box tucked behind. But we probably won’t tell you it was 3am Thanksgiving morning. And you could probably imagine what we were actually doing at 3am Thanksgiving morning, or maybe not, in which case the book will reveal these unknown pieces. But there are also times of depression or times where we were struggling just even to connect.
Like any other couple or any other individual, we have our moments of failures and our moments of joy, times of doubt, or times of fullness and celebration. How often do we want to hide those times of failures? And how do we talk about delicate themes or dynamics in relationships (not just between Barton & I but also within our families & friends), still fragile or complex? But these are the places where we learn and grow, and so these pieces become a vital piece in the fabric of who we are.
We’re risking a lot.
We risk it all, everyday. We don’t always know what the future will bring. I can’t always tell you this particular way will work or if it will be successful. We don’t know (any of us) when sickness or tragedy will fall upon us or when we will luck has found us. But I wouldn’t have it any other way. I can tell you that no matter what happens, we are together, loving and living. And this is what any person, family, community strives for.
The door is opening, and with our words, we lay down who we are at our core- quirky, loving, defiant and stubborn, funny, or sometimes fearful and angry. We bring others on our journey- and to consider their own lives, to break out of the box of self-limitation, and to see ourselves beyond what each of us believe is possible.
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, Megan Cutter, wheelchairs
This week was turned upside down, literally. I don’t know what it was- the time change, movement in other areas of our lives, but it was one strange week. Monday afternoon, I found Barton at his next computer, unable to move his wheelchair out of position.
All of a sudden, there was a flurry of logistics that had to be altered and calls to the computer repair, and a discussion of what now. Luckily, he was able to get a temporary joystick on Tuesday until we are able to purchase another, a $500 replacement. And we thought we were finally treading above water.
Monday night, however, I woke up in the middle of the night, and in my dream-state, ran head on into Barton’s manual chair sitting in the middle of our bedroom. I thought I had only stubbed the skin off my toe, and went back to sleep without another thought.
Yet, in the morning, I felt a horrible pain in the back of my ribs. In running into Barton’s wheelchair, I had crunched my whole body. I was unable to catch my breath, and every movement just plain hurt. I grabbed an ice pack, and we took extra care in getting Barton up, using a back brace to make sure I was stable. The appointment to my dear neighbor and chiropractor Donna Hedgepeth couldn’t come fast enough, and I’m so appreciative how she was able to move things back into place.
All week, I’ve had to take it slow- move slow, work slow, focus on my body and what I am doing, even if I am sitting at my computer. It’s taught me to be more patient with myself. And Barton took more care too- refusing to let me pick him up if I didn’t have the back brace on.
Now, to be honest, this is not the first time I have run into Barton’s wheelchair. It’s just one of those things. One time, when the weather was gorgeous, we were running together. Barton had the dogs and I was behind him- just trying to keep up. We saw two women who waved and said hello. Barton stopped- and I didn’t- it was a full on impact. I wondered how funny it would have looked to the two women who had gapped at our position, as I almost flew over the top of the handlebars.
I admit, too that I have run Barton into people, waiting in line, not paying attention. It’s easy to do- there’s a whole spacial shift that takes place- with a metal frame and foot petals. Many people ask how Barton can train in martial arts with a wheelchair. Believe it or not, a wheelchair provides many hard and sharp angles, hidden places to wedge an opponent’s foot or arm- and that’s when Barton’s in his wheelchair.
It’s an entirely different issue when the wheelchair is empty, and apparently the opponent is me!
Tags: communication, creative expression, daily living, disability, disability and love, disability and marriage, disability and relationships, Megan Cutter, vision, writing
While we were out and about this weekend, someone came up to Barton to compliment him on articles in our local newspaper, but then mentioned that it was great that we write them together, implying that I wrote Barton’s articles for/with him. While I’m sure this person didn’t mean to offend, Barton took it as somewhat of an insult, because there was an implication that he wasn’t capable of doing it on his own.
So let’s dispel some myths right away: I am not allowed to touch anything that Barton writes, and if I am transcribing and miss a word, I put brackets around it so Barton can go back to edit what he meant later. In fact, I am not allowed to touch anything we write until the editing phase. It’s really important to me that when our book comes out, that others know Barton’s sections are his own writing.
Digging a bit deeper below this particular misconception can hit on an even more profound concept for those with and without disabilities. My work as a writer and coach for others- adults and young adults alike, is to provide the avenue for each person to find their own voice, whatever that voice may sound or feel like.
It’s easy to dismiss the communicative arts. I’ll get comments like, “My daughter can’t write.” Creative expression may be in a look of the eye, a cry or sound, a green scribble or a body movement. We can build these relationships and communications over time. Who am I or you to say what it should look like? One of my best successes is one of my students who told me there were no adjectives to describe love. We can build goals around learning our own voice or expression, to tell someone how we feel for example or to navigate within our community.
Recently, an episode of Switched at Birth looked at the determination and challenges of a young man learning to speak with a hearing impairment. In many ways, his learning to speak verbally was a direct reflection of his identity, wanting to relate, be a part of and connect within a hearing world.
When do you feel like you may not have a voice? It could be during a discussion of a particular issue, wanting to keep a job, in the midst of a health crisis or illness. It could be when you feel that no one else could possibly understand where you are. There are many times throughout our lives when we feel like we don’t have a voice.
For me, it was when, as a child, I would write stories under the covers of my bed or hide notebooks in my school locker because family, teachers or professionals thought my writing stories was somehow interfering with other aspects of my life. Years later I was still questioning if I had all of my childhood notebooks, still trying to claim my voice.
The vitality of owning our own sounds, words, non-verbal communication, language is an essential piece of who we are. Claim it, own it and value others who have their own voice, no matter how it may manifest itself.
Tags: disability and love, disability and marriage, disability and relationships, fun, gratitude, interability marriage, love, love story, Megan Cutter, time together, vision
Last week was full of celebrations, as February 14th was Valentine’s Day, Barton and I had met on February 15th nine years ago, and Barton’s birthday followed closely afterward.
Yet, not only was it full of celebrations, but it one of our fullest weeks in quite a while. I taught four classes during the week, Barton had a conference with several adjoining events, and a barrage of emails, conversations and other to-do’s filtered throughout the week.
After Barton’s conference, we headed over with colleagues to one local restaurant, Irregardless for a celebration dinner. Owners Arthur and Anya are neighbors, and we see them often walking the path of our neighborhood. Sometimes I’ll be out with the dogs, or Barton will be zooming off to one of his meetings. This night turned out to be especially joyous. We were greeted by Arthur and Anya, students from a local school were playing incredible jazz, we shared desserts, and had a night of great conversation full of laughter. As we were leaving, the hostess asked if Barton wrote for the paper because someone had left a note for him telling him how much his articles meant- later he put it up on his desk. What an evening!
Friday, finally we had a little time on our own, and we found ourselves just being present, sharing pieces of our week, of what we learned and ideas that we had. We chatted about the generosity of others for our Kickstarter project for Ink in the Wheels: Stories to Make Love Roll and talked about how far we could go with our project. It was a delight just to feel the quiet flow of conversation and connection.
Whatever else may be going on, whatever hurdles or craziness of life has creeped up, taking the time out to celebrate, I am learning, is so necessary.
I’m one who uses lists- I have my daily to-do list, project list, creative list- it goes on. And sometimes I have a tendency to see what’s still left on my list at the end of the day, what hasn’t been accomplished. Over time, this can be awfully daunting to only see what’s left undone.
As long as we live, we will have goals and visions, things we would love to do, places where we raise the bar for ourselves, or someone else raise the bar offering a choice on whether we will jump in or stay where we are.
Taking a breath to celebrate what we have accomplished is a vital part of the journey, not to wallow in its glory, but to pause for just a moment, become aware of where we are before moving onto the next step.
There are times when these celebrations are for momentous occasions, to be shared with others, and there may be times in our lives when we need to celebrate the simplest acts, where making it through the day is a grand step, and these private celebrations are not seen by anyone.
What are you celebrating today?