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: 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: 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: 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: Barton Cutter, communication, daily living, disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, recreation
Hello all! It’s been quite some time since Megan and I have added to our blog, and to those who have been waiting I apologize. 2011 has blossomed for us like a fiery bromeliad, radiant in color and pulsing with life-giving potential. Within this current of excitement and possibility, I have become increasingly alert and respondent to the ever-evolving cycles that are present in our lives, both individual and collective, as well as their need to be fully expressed.
Whether or not we’re aware of it, we are constantly engaging in multiple cycles at once, from the most basic of life cycles to those of our environment to how we choose to express ourselves. Many of these life patterns occur beneath our conscious awareness yet, our gift as human beings is our ability to recognize and discover deeper meaning to these processes as they unfold within and around us. At the same time, it can become extremely easy in our modern culture to either ignore or even interrupt these natural cycles.
For me, giving my own cycles, be they physical, emotional, or spiritual, greater attention has allowed me to process life’s natural ebb and flow more fully leading me to a richer experience of whatever may be happening at a given time. It has also made me more cognizant of the subtleties that can be found within each. Along with this attention to subtlety has come a more refined ability to see how and where I have not permitted these cycles to play out fully and lead to stilted or incomplete expressions of intent which, in turn, leave me agitated and groping for resolution.
Both Megan and I have spent much of this year working with what appears, at one level, to be great speed and decisiveness, yet this outward result has stemmed, to a great extent, from periods of inner stillness, following impulses, and gaining clarity from vital learning. At times we have coincided in our internal patterns, while at other interludes it has been important for one of us to follow our own intuitions within those rhythms and notice its undertones. The result, from my vantage point, has been an exquisite intermingling of our ability to move and respond to our vision for who we are as individuals and as a couple.
Tags: communication, disability, disability and love, disability and marriage, disability and relationships, interability marriage, Megan Cutter
First of all, we want to thank all of our readers and those who commented on our last blog post. It’s a delight to have so many voices & perspectives that add to the conversation and dialogue. One great point that was brought up was how we deal with others who make comments- how do you respond to them?
I admit, that when I first encountered questions and assumptions about our intimate life or if we could have children, I had no idea what to say. Should I give an off-cuff humorous remark about sexuality and disabilities? Did they really want to know? Should I be polite and quiet, or not respond at all? For the most part, I realized that most people just didn’t know, and it became an opportunity to educate others about how those with disabilities can live healthy, normal lives. But not everyone wants to be an educator; they prefer more private lives, and there’s nothing wrong in keeping our lives private.
Barton has always used humor in responding to others, addressing their questions or assumptions. He’s found that humor eases someone who may be nervous or feel uncomfortable, and provides a lighter way to connect with someone who has questions. Most people know me as the quiet and calm one, but underneath, there’s a quirky sense of humor as well- so when you get Barton and I together, there’s bound to be a fun conversation.
Since Barton and I are both coaches, mentors, writers, speakers, we have opened up our lives to the public, for several reasons. We hope to give other inter-ability couples a sense that they are not the only ones out there and we can all come together in community to support each other in being successful in our lives. I’m so relieved to hear of other couples as they overcome the struggles in their lives, and it has given a sense of camaraderie that I don’t find anywhere else.
We hope to also give hope and inspiration to individuals, families and professional staff that their family member, friend, client can be involved in the community. “Out of the box” has become an overused expression, but I’m not sure I knew the true meaning of the phrase until I met Barton, and it’s completely changed the way I view the world.
Also, we hope to affect those in the community who may not only believe in the limitations of others, but of themselves as well. In our exchanges with others in the community, there is a moment when you can see someone burst through those limitations and assumptions- it is powerful to be a witness to see someone as they come to a different understanding.
As a writer, I’m interested not only in these connections, but in the context below the surface. In my listening to the man call out to me, “Well, you’re a healthy cripple,” what was underneath his chiding remark (whether he meant it intentionally or not)? How do we relate to one another, on all the intricate levels underneath? The past few weeks, I’ve been given the opportunity to see how I react in different situations, to uncover why I did or did not respond in a particular way and how that affects the community I was in.
So how do you respond to others in the community you come in contact with? It’s up to you, truly. Here are a few questions to consider:
• What does your personality call for?
• How much are you willing or unwilling to expose?
• What are your values, and is there a way to express those values to others in different ways?
• How can you be open to change yet not change yourself on someone else’s account?
No matter what, discover your voice, what you want to say and find a platform for where your voice can be heard!
Tags: Barton Cutter, communication, disability, disability and love, disability and marriage, disability and relationships, interability marriage
Over the past few days, Megan and I have had some interesting discussions, not only in our experience over the weekend, but also writing the blog post and looking at different angles of how we respond in different situation in public.
A while back I was asked by a group of young disability advocates how I dealt with people that don’t have enough patience to take the time to understand me. My initial response was that I attempt to approach these situations with patience and openness in order to set an example for whoever the person is that I’m speaking with. While this angle tends to work well for me, I realize that this is only one of an infinite number of possibilities. The question that comes to mind most prominently when I contemplate this is, “what response would best honor the humanity of both people in this situation?”
As people we all have the potential to step into a space of greater alignment and connection; but we also have the ability to withdraw from this same space and become trapped in our own conditioning. If we are able to let go of our fears and engrained patterns of behavior we will find a place of expansiveness that in turn creates a profound sense of dignity for you and everyone that you come in contact with. Finding this space is infinitely simple yet we continually forget how to contact it (trust me, I forget all the time!). The initial contact can be made in feeling an exhale, a deep laugh, or even feeling the space around you. When this happens, how does your being shift? Do you feel more alive or present? Do people respond to you differently?
Keep making contact with this feeling and see what develops.