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: 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.
Tags: Barton Cutter, coaching, daily living, disability and love, disability and marriage, disability and relationships, Work, writing
Do you ever find yourself in a position where you are struggling to fight off the inevitable? I found myself in this vary situation last week, as, for various reasons one of my largest and most foundational contracts was frozen for renewal. I had known this was a possibility and yet, as the news hit my ear, during last week’s meeting, I found myself in a panic, struggling to find a way to hold on. Yet, there was none.
At the beginning of this year, I remember working with my own coach to design what I would like to the next twelve months to look like. As I worked through this vision, I noticed even in January that much of my focus and intention was placed on expanding in other areas namely completing and publishing our book as well as growing my coaching practice.
Indeed, I had been waiting for an opportunity to dive off the cliff and soar into the greatness of being a full-time coach and mentor. But the truth is, there is a bottom line that we have to account for to maintain sustainability. As I absorbed the shock last week of the fact that this contract might be placed on hold for an indefinite amount of time, I found myself examining how to balance this need for sustainability with my passion and love of coaching and mentorship.
And indeed, I am still in the process, but as I hold these two aspects side by side, I notice that I have been offered an amazing opportunity to transform my professional direction, like I’ve said in my previous posts, this will not be a denial of my writing skills, but rather a more holistic embrace of them. And, by the same token, a more holistic approach of the compassion and love of coaching.
As I have begun to search for other work, I find that my skills as a writer are indeed most essential, particularly as I notice that I cannot abandon my background and success in public relations. Yet my skills as a writer need to be harnessed and utilized within an organization that carries the same passion and commitment to supporting people as I carry in my work as a coach. I suppose when I do discover this perfect match or combination of matches with multiple organizations, I hope what I will find is an environment in which my writing abilities will be put to task as a catalysis for an transformative experience for the human soul in the same way that I witness the shift in the spirit of others after a powerful coaching session.
In a conversation yesterday with the head of a local non-profit organization, I found solace of his understanding of how the use of the tools that I bring to bear need to be implemented in such a fashion.
It is not merely about building the brand and messaging of an organization, but instead cultivating and transforming the hearts of those that work for and are touched by the organization. Herein lies the foundation for building inclusive communities.
Tags: Barton Cutter, coaching, daily living, disability and marriage, disability and relationships, vision, Work, writing
Recently, Megan posted about the importance of courage. How, with each word, we find ourselves uncovering the vulnerability to tell the truth of who we are without hiding from it nor apologizing for it.
I find myself struck by how, as we enter again into refining our book for publication, we are continually being called to embrace great courage in our daily lives, almost as a living reflection of our editing process. Over the past several weeks this need for courage and honest vulnerability is re-emerging as a central theme in my own life. More specifically, I have been exploring how this vulnerability informs my capacity to care for my family and progress in my professional endeavors as well.
In the face of some recent transitions, and the looming possibility of having to navigate changes in contracts, this question of vulnerability has called me to reassess how I understand my personal mission of supporting others to embrace their full potential and the best means by which I can execute it. As many of you know, coaching and mentoring has been an on-going passion and over the past few years, has taken center stage in terms of the direction in which I’m headed. At the same time, this has always been backed by the security of projects in other arenas providing for our basic needs.
It is clear to me that I am most comfortable and most fulfilled working within the realm of developing others to be their absolute best be it personally, professionally, within organizations or whatever possible format may be applicable to them. I am also equally aware that as a professional myself, many of my most valuable assets also include my writing abilities, public relations, and marketing.
Understanding these two realms, both where my personal passion and ambition lies as well as understanding when others perceive the bulk of my talent causes me to carefully examine how I can interweave the two so that both aspects are utilized to the fullest without compromising either my love for personal development or my skills as a writer.
Herein lies the heart of vulnerability, as this recognition is not one-sided. Nor does it hold one aspect as being more favorable over another. It is through this honest conversation with myself that is unraveling a new framework for the next evolution of my professional and personal life.
In facing these realities fully and understanding who I am, I become less attached to having a specific ideal and rather feel more comfortable designing an integrated, and ever fluid professional life that incorporates elements of the whole range of talent, experience and passion. Indeed, this conversation requires the same courage and vulnerability that Megan and I are facing on a daily basis as we re-engage with our manuscript. And, it is through this vulnerability that we discover a fullness that we were previously unaware of, no matter our endeavor.
Tags: Barton Cutter, coaching, disability and love, disability and marriage, disability and relationships, fun, gratitude, interability marriage, vision, Work
Do you ever find yourself in awe of the cyclical nature of life and how, whether we like it or not, we seem to be carried from peak to valley and back to peak to re-examine our patterns and behaviors? It’s times like these where we often find ourselves experiencing a strong sense of déjà vu, almost as though the universe is pointing you toward certain elements in your life for some inexplicable reason.
The past few months have certainly been one of these times for both Megan & I, where the unnecessary seems to be falling away making room for new and greater potential.
For me, this letting go requires a great deal of trust as the face of one aspect of work transforms to encompass new and perhaps less concrete delineations. And yet, in the same pulse of letting go, another entirely unforeseen opportunity may emerge to carry us closer to our vision for working with other families. Certainly I have witnessed this occurring for Megan on almost a daily basis as opportunity after opportunity arises.
The driving question behind helping us decide the most appropriate course of action has transformed from which is in line with our personal vision and which is not to which of these opportunities resonates most closely with the ultimate fullness of our goals.
We both see multiple opportunities arising at the same time, and all of them are somehow aligned with our vision. Yet, like the master musician striking the middle C, it is up to us to distinguish the notes that resonate most harmoniously with the depths of our soul. No longer is the major third, fifth or seventh sufficient. Only the pure resonance of the full interval of an octave crisp enough for us to now take action.
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.