Don’t forget, we’ve moved to a new blog platform!! Catch all of our new blog posts here:
Just a few updates, Barton Cutter is a semin-finalist for the NMEDA National Awareness Month Contest, where three people could win an accessible van. Read our Open Letter to the NMEDA Community: National Awareness Month, where Megan shares her reflections on living and working with Barton!! And be sure to share it! We don’t know what will happen, so stay tuned!!
AND we’ll be speaking at TWO summer events- the Abilities Expo in Chicago and the Living Well with a Disability Conference in Pennsylvania. Catch us at one of our events here: http://inkinthewheels.com/scheduled-events-readings/
And we’ve received inquiries from all over the world about living, life and love with a disability once we launched Ink in the Wheels: Stories to Make Love Roll!!
Catch these recent interviews!!
~Megan and Barton Cutter
Just a reminder that you can keep up with Love Rolls On on our new Platform!
Here’s the Latest News:
National Mobility Awareness Month: Wild and Wacky Stunts for a Van
Our vision is to reach as many families as we possibly can through a national book tour and speaking engagements. But to do that, we’re going to need an accessible van. We’ve entered the National Mobility Awareness Campaign to win one of three vans. Help us by voting for Barton here!!
Ink in the Wheels: Stories to Make Love Roll is gaining national attention!!
Check out these interviews here:
WRAL Tar Heel Traveler
And you can purchase your own copy here: http://inkinthewheels.com/purchase-your-copy-here/
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!
As we prepare for the publication of our book, Ink in the Wheels: Stories to Make Love Roll, we are excited to be putting together a book trailer, new website and blog!
And Ink in the Wheels: Stories to Make Love Roll will be released February 2013! We’ll keep you posted with links to the book’s website, and upcoming events and readings.
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: 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: Barton Cutter, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, vacation
Have you ever had a terrible, horrible, no good, very bad day? Well, we had one crazy week before our vacation.
Monday at 4am we drove to Charlotte to be at a daylong meeting.
Tuesday, 6am: drove home to meet clients for both Megan & I. We got home at 5pm to find Basho, our younger dog, limping. Megan took him to the vet, after x-rays found he would need surgery. Woke up at 1am, trying to decide what to do for him & was less than compassionate toward Megan.
Wednesday: Megan rushed to catch up on work as a construction crew came to repair the foundation of our house. 2pm: ran to the doctor’s office to have my pump refill, 4:30 Megan & I hadn’t eaten all day, picked up a burger & shake. 5pm: five minutes to breathe & eat. 6:30pm: On the way to bed, felt nauseous. 9:30 after 2 1/2 hrs of sleep woke up & got sick. Megan threw me in my bath chair to clean the sheets, wash me off. We decided it was wiser if I slept in my chair tipped back against the wall. 5am woke up cramped from sleeping in my chair but Megan was asleep, so I wasn’t going to say a thing. Woke up every hour for the next four hours.
Construction crew arrived at 9am on Thursday. I slept till 12:30 even after Megan asked me to wake up because she had to leave. 1:15pm: Megan enters “Barton, have you heard the AC. Come out on the back porch.” I go out on the deck & hear what resembles a sub-machine gun on steroids. We turn the AC off. 7pm Megan calls all of our neighbors trying to find someone who has floor fans that we can borrow. 9:30pm friends deliver 2 high-power fans from their office. 10pm sleep maybe.
Friday 6am: the ultimate test chicken noodle soup. It stays down thank God. Trying to rehydrate, pounded an entire liter of Poweraid in less than 5 min. 12pm: the final floor lift. We hold our breath, what else could go wrong? Will we have plumbing? Who knows, and we have to leave. 1pm: Chapel Hill Megan & I present an hour and a half video seminar on self-care for professionals yes, I did say self care. 3:30 Finally get home, I hope our plumbing still works. Only three cracked tiles in the bathroom, and the toilet still flushes. I’m saved. Megan wants to go out for dinner. I still don’t trust my stomach; no way I’m eating real food yet.
Saturday 3am: This morning I wake up on my side and need to roll over. I wake Megan who is irritable because she’s been so sleep deprived. 9am: Wake up have a marvelous conversation with my love while cuddling in bed, up by 10, coffee shop by 10:30, working on the book. 2pm: Home to finish my article, it’s 86 degrees inside the house & we sit on the sofa to do nothing because it’s too hot to move. We survive by eating Italian Ice. Sunset 8:30, Megan & I still have work to do.
Some weeks are like this. We need a vacation. Thank God we got one!!
We returned from vacation to find that Basho had suddenly passed away. To our Wild Child, you brought joy and youthful vitality into our lives, you will be missed!
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.