In the Midst of Change
September 11, 2012 at 11:06 am | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | 1 CommentTags: 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.
Real Life Disability: What Do You Do When the Whole World Doesn’t Think You Are a Man
July 20, 2012 at 11:32 am | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | 1 CommentTags: community safety, disability, disability and marriage, disability and relationships, disability misconceptions, interability marriage, Megan Cutter, misperceptions and disability, views on disability
Barton taking Megan out.
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.
The Week That Wouldn’t End
July 15, 2012 at 2:34 pm | Posted in Barton's Blogs, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | 1 CommentTags: 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!!
Barton and Megan on The Big Island.
Barton and Megan at Volcano Park with Rainbow
Drinking from a coconut, Oahu.
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!
An Honest Message About the Portrayal of Disabilities and Relationships
June 9, 2012 at 9:03 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | 1 CommentTags: communication, disability and love, disability and marriage, disability and relationships, Megan Cutter
A picture we took a while back, how we see our relationship, but not everyone has the same perspective.
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.
Wheelchairs are Hazardous to Your Health
March 16, 2012 at 10:30 am | Posted in Around the House, Megan's Blogs, The Nitty-Gritty | 1 CommentTags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, Megan Cutter, wheelchairs
Playing in the sand was fun, but wheelchairs can also be hazardous to your health!
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!
The Importance of Our Own Voice
February 29, 2012 at 3:35 pm | Posted in Megan's Blogs, The Nitty-Gritty, Work | Leave a commentTags: communication, creative expression, daily living, disability, disability and love, disability and marriage, disability and relationships, Megan Cutter, vision, writing
Each of us has our own distinct voice.
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.
Love Rolls On! Unlikely tales of marriage, love and disability 