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, 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: 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: 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: 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, disability and love, disability and marriage, disability and relationships, interability marriage, Megan Cutter, vision, Work, writing
I knew I was getting a cold when my throat began burning and even though I tried to gargle with salt water, it wouldn’t go away. Yet, this deviated from the normal pattern I was used to. Instead of having a sore throat for a day and then moving on, I lost my voice for five days sounding more like the wicked witch of the west- “I’m melting.”
We walked into one of the classes I teach with a sign on the white board- “I lost my voice, but don’t worry, we have a plan.” Barton was great, facilitating and moving my class forward, and still I found it difficult to keep my mouth shut. So the past few weeks, we have been bouncing projects and events back and forth, resting and yet filled with the excitement of moving forward on new opportunities.
As I’ve come back from not having a voice, I’ve had to break my day down a little bit more- vital daily deadlines, vision- the book and writing, sustainability (because yes, over the holidays one of my contracts was cut and I am looking for new work) and taking time to do one thing a day to make sure I stay healthy- and that Barton & I stay on track. And we’ve had to be flexible and go with the flow a little bit more.
We are well into our Kickstarter Campaign to defray production costs of our memoir, and we have just been awed at the support from those around us- not just financial support but thoughts, calls, notes and emails that were sent that just had us both in tears. It’s one thing to believe you have an impact, it’s another to be shown what that impact is, and both of us had to take some time to process what we do with this, especially at the profound level we experienced. And our answer is- to keep on doing what we’re doing.
Wednesday we drove down to Greensboro to drop off pictures and samples to the designer for the cover & back cover of the book, we’ve had several meetings to reach schools and parents in new ways, and we’re attending some events where we hope to make an impact. I’ve seen Barton’s delight in talking with a potential new coaching client, and I’ve experienced the love of teaching and working with youth and adults.
And for that, beyond all other challenges we may face, we are blessed.
Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, fun, interability marriage, love, Megan Cutter, Work, writing
Yesterday, we spent the afternoon with our beat-up flip camera filming a clip for our Kickstarter Project. Kickstarter is a way to connect funders with projects, and videos bring the story to life. It’s your chance to pitch your story, and communicate what you need. Don’t worry- you’ll hear more about our project in February, when it goes live.
We had a few hours in the afternoon, and we were determined to get out a version we could use. Mind you, we had spent the weekend writing a script, pieces Barton could say, and others I could, overlapping our voices and message together. So, we began by pulling out the script, and Barton had the bright idea of posting it somewhere for us to look at.
Yet, when we began arranging things in our studio, there was no way to post our script without being obvious. So we threw out that idea. Instead, we figured we would just tape as many versions we could and pick out the one we liked the best. Yes, we each had pieces we would say, but we would also jumped if we needed to. And then I got worried about screwing up our quote at the beginning, so Barton started us off right.
The result was a fun afternoon of improv and fits of laughter. Yes, I’m not sure which one of us got the giggles first, but every take after that was cut short; Barton even had me laughing so hard he brought tears to my eyes. When we were done, we were both exhausted, but we had great fun, and hopefully, accomplished what we needed for the project.
So much for being “serious” in front of a camera- but you know, we are who we are!
Tags: communication, disability, disability and love, disability and marriage, disability and relationships, interability marriage, love, love story, Megan Cutter, vision, Work, writing
Over the holidays, a contract is diminishing for me and we finished a draft of our book, all within two weeks of each other. The glass half empty, the glass half full. At the moment, I’ve been sitting in the middle of the unknown- we don’t know what will happen as I am reworking one of my primary contracts, which we know will be cut in half or more, and at the same time sensing the elation of a project in the midst of manifestation after so long of talking and dreaming- it’s been quite a holiday.
Along the way, Barton has been amazing- offering the support to go with the flow, with the genuine and true belief that no matter what happens, we will be okay. And truly, there are many exciting and new possibilities at the cusp of fruition this year. Since our focus for the book has become clear with Barton’s excitement almost surpassing my own, the contagiousness of our energy has bounced off each other to create a momentum that I have not experienced before.
For me, it’s been vital to focus on our manuscript in this time of unknowing, and trust me, there has been much to do. Barton found that he could write much more material by using the Voice Memo App on his I-Phone and could record about a 7-minute piece to then email to me for transcription. I would sit down at my computer, open my in-box to find a string of 5-10 voice memos to transcribe. Since October, Barton has written, and I have transcribed, over 100 voice memos. Wow!
One by one, I would transcribe, typing about the same pace as Barton’s speaking rate, which worked perfectly. I created my own system, putting brackets around words that I could not make out, and leaving spaces between each section since the order I received them in was not necessarily the order that Barton intended.
I would also have pieces of material I was working on, and found myself as I normally do, writing at four or five in the morning to candlelight, and then later in the morning or evening transcribing Barton’s work, finally to put them together as overlapping voices for our story.
We were so determined to make our own deadline to send our draft to our editor that we worked through the winter holidays. In fact, New Years Eve, we were so exhausted we were asleep before any New Year’s celebrations began.
Yet, what a blessing to start the year of with a project that we believe in, have a clear vision for and hope that others will find what they need in their own lives. And so, for all of your inquiring minds- the first draft is done, yet there is much to do for publication this fall. We’ll keep you posted for pre-orders!!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, Megan Cutter, technology, Work, writing
Barton and I had spent the morning making revisions and changes to the memoir we are writing, and we returned home to implement these revisions into our working document, and I also had planned an afternoon of catching up on work. I turned on the computer, opened all files, and a few seconds later- it all froze. Frozen- completely.
I pressed the power button, and the computer booted up with a purple and green striped screen, which looked like Christmas wrapping paper, with an error message to reboot, in more than one language. I did try, with the same result- in which case you know not to try anymore otherwise you will hit a high level of frustration just from producing an identical result.
Barton was on the deck with the dogs, and I made a face through the windows. “Honey, we have a problem.”
I turned the computer around so he could see the ‘70’s tv color stripes on the screen. I was determined not to freak out.
The afternoon ensued with preparation in case I had lost all data, and a trip to Apple amongst several hundred Christmas shoppers, to thankfully discover it was a graphic card failure, known to fail, and the repairs would be at no cost. As chaotic as the store was, I was still impressed with their customer service.
Barton mentioned more than once that he was proud of my reaction- a far cry from a few years ago. And when I needed a minute so that I could keep my composure and not get lost in the fear of computer crashes, Barton was gracious enough to give me the space I needed.
Several years ago, with a PC, I was working on an article for the News and Observer North Raleigh News, and interview contacts were in an email by the editor who had sent them just as he was going out of town. I don’t know why, but I had this nightmare that my computer wouldn’t turn on, and well, I must have been on that weird wavelength because I woke up early to find the computer would not power up. 7:00am, and poor Barton woke up to my blood curling scream and hyperventilation. Several trips to Best Buy, $100 data recovery plus repair costs to the power strip- all in early December, and it just happened to be the day the Wii was making its debut. What a nightmare it was.
Even with a calmer response, for a writer, any technical glitch can be frustrating and set one back on their deadlines. More than once I tried to get up “to check my computer,” sitting back down to realize there was nothing to check. I sat with my Tension Tamer tea in hand, realizing that whatever work I thought I was going to get done just went out the window.
I breathed in a mixture of peppermint and chamomile, and pulled out a notebook and pen.