Stepping Up to Embrace Otherness

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Barton and Megan create conversation.

What happens when you meet the other?

How do you react when you come across something that is different? We might react with curiosity, fear, comparisons, hesitation, or acceptance. These are all normal reactions when we meet “the other.”

In an essay my father, Louis McLeod, PhD wrote called The Fear of the Other: “Deep in the human experience is an innate fear or suspicion of that which is different or unfamiliar. We can experience people with whom we are in conflict as “dangerous” to some degree… I wonder how to transform my seeing the “other who is different from me” into the friend or partner who has much the same yearnings for safety, connection and growth as I do? How can I move beyond mere tolerance to acceptance?”

While each one of us has positive and negative experiences in creating friendships, partnerships, and work experiences, I have recently thought a great deal about how Barton and I move this fear aside in the work we do, and in the work we want to do.

Since moving to Raleigh in 2005, we have led a number of workshops and have spoken at a number of conferences. Since the release of Ink in the Wheels: Stories to Make Love Roll, this dream of national and inter-national speaking has only expanded. We have tasted the phenomenal change that occurs when we speak in front of others.

However, not everyone is ready for us. How incensed I was for us to have gone to a conference where Toastmasters touted how inclusive they were only for Barton to be rejected as a member of the Toastmasters of Chapel Hill Club because of his slurred speech. The rejection was covered in flowery language, “Well, he wouldn’t be able to achieve the objectives…” While we did find a more accepting chapter, it never dissolved the sour tainted taste that we were exposed to.

The point, though, is that we did not stop. We continued on believing in the vision that was bigger than the challenges faced in front of us, and will continue to search for organizations and people that see the spark that happens when Barton and I are together and want more, for themselves.

As we step into the spotlight more, we know that not everyone is ready for the transformation that Barton and I present. It means breaking down our own barriers, breaking down the unconscious limitations that we hold, for others, and even for ourselves. And isn’t that such a hard thing to do?

Recently, when looking at how to showcase our abilities, I wrote: “We can’t be afraid of Barton’s speech pattern—otherwise we are training other people to be afraid if it, too.”

We have played with speaking in public quite a bit, and Barton’s accent has been in much discussion before. In fact, Barton wrote an article for The News and Observer looking at what it means to find ways of connection.

Barton and Megan Cutter at Living Well with a Disability Conference

Barton and Megan Cutter break barriers through words and being. Photography credit: Karen Kain

Sometimes, it’s not even in the words we say. At the Living Well with a Disability Conference, one morning I decided to ride in Barton’s lap; admittedly, I was being lazy, complaining about my sore feet.

But look what happened when the conference photographer, Karen Kain, caught us whizzing by. We caused many people to turn their heads as Barton zoomed down the conference aisles, and we also visually shared how people with disabilities can discover relationships, love and connection with others.

There are times when I question my own strength. Wouldn’t it be easier if… But we did not take the easy path, because we were meant for something greater, to create even greater change, and leave others wondering how they, too, can come to accept the other.

Speaking of Understanding: Speech Impediments and Public Speaking
Barton Megan Speak: Communication for People with Disabilities without Words

Posted in Ink in the Wheels: Stories to Make Love Roll, Megan's Blogs, Our Love Story, Speaking Engagements, Work | Tagged , , , , , | Leave a comment

Grace in the Face of Defeat and Fulfilling Impossible Dreams

MegaWave

Today, I watch anxiously, checking every few minutes on Diana Nyad’s blog. She is hours from completing her extreme dream of swimming in the open ocean from Cuba to Key West. To get there, she made four previous attempts, was caught in life threatening lightning storms, stung by jellyfish, experienced physical pain and mental fatigue. And then there was the disappointment of defeat, and then, the kickass strength to get up and do it all over again. And again, and again.

Her first quote to reporters: “One is we should never ever give up. Two is you never are too old to chase your dreams. Three is it looks like a solitary sport, but it’s a team.”

As I celebrated my birthday, I reflected on what we have accomplished over the past year, fulfilled passions, unrealized dreams, and devastating defeats. What a phenomenal and thrilling year!

Childhood writer's dreams began with notebook

I still have my folder with the first few poems I wrote. The other notebook was given to me by a nurse during a trip to the ER (asthma), my first journal.

When I was eight years old, I wrote my first few poems, and I kept a pink folder with now yellowed paper decorated with scribbles and doodles. I was going to be a writer. But a writer was published (so I thought). Even though I held reams and reams of notebooks in my closet, I didn’t consider myself a writer until I had a published book in my hand. I did everything I could to keep the dream alive. I wrote under the covers at night, I hid my notebooks in lockers, and I wrote after midnight in the bottom floor of my college library. Words inked their way out of my skin and onto the page.

Barton and Megan Cutter publish Ink in the Wheels: Stories to Make Love Roll

We celebrated the release of Ink in the Wheels: Stories to Make Love Roll. Photography credit: Anora McGaha

This year, that dream of a published book was realized, the first time of flipping through the pages was exhilarating. Barton opened our first sample copy. The moment of standing in his office, both of us jumping in the air will never leave my memory. We relished sharing our celebration with our families, friends, and community during the release event, which was a true party! My dear friend Anora McGaha took this picture, and while I might shy from the expression on my face, the elation and pure joy we felt is contagious.

And yet, there was an undeniable urge to do more. I kept telling Barton- it’s not out there. I haven’t done what I believe Ink in the Wheels can do yet. Even when friends called us or posting on Facebook how they couldn’t put the book down, how our words touched them in some way, I knew our work wasn’t done yet. And I am still saying, there’s more to do. It’s not out there yet, there’s more to do.

We experienced devastating defeats. For every defeat, there was an even more amazing blessing.

Barton and Megan Cutter dream of an accessible van.

The perfect pair together.

While Barton was a semi-finalist for the NMEDA Mobility Awareness Contest, we didn’t win an accessible van. We will lose transportation in December. And yet, we created a movement of support who voted for us and believed in us, at times more than we believed in ourselves. We had a blast making funny pictures and videos that shared pieces of our lives with friends and colleagues. And we experienced the amazing support of family, friends and communities coming together. And we continue on, so close in our dream, with the extra push from our families that will hopefully send us over the edge. http://www.gofundme.com/3393f8

Lines on my bucket list were crossed off, inadvertently unsuccessful with the changing times. I dreamed of being on Oprah’s Bookclub, America’s Extreme Makeover Home Edition (couldn’t you just see Ty Pennington and Barton cracking themselves up), NPR’s The Story, all national based programs that have ended or are ending. (I haven’t given up on Ellen Degeneres) And yet, we attended The Abilities Expo, an Open Mic in NC that celebrated the full community of inclusion, and were interviewed on podcasts and local radio shows, the airwaves rippling out into the world, no matter how small or large the impact.

A dream of adoption, deferred for one more year, needing to concentrate on Ink in the Wheels and distracted by transportation. There are times when I think the process of adoption will be easier than figuring out the accessible van. And yet, we redefine who are families are, supporting our families how we are able, and continue to believe in the unattainable dream, together.

There are time when I am completely ungraceful. Losing the van contest, I fell into depression for a time, not believing in our dreams and not wanting to acknowledge what we have indeed accomplished. The frustration of being so close, but just not good enough. I was ready to give up, my childhood girl full of drama kicking in.

And then, I found I couldn’t. I’ve seen what impact we have had, and knowing there is more work to do, there wasn’t any way I could give up now. So I stood back up. We looked at what we could have done better and over a birthday dinner, celebrated how far we had come.

I don’t know what this next year will bring, how much further we can go. I don’t know if any bucket list dreams will be realized or will elude me further, but what I do know, from the bottom of my heart, the passion to do more is undeniable. And we will keep moving forward; we will keeping going.

And who knows what challenge, what joy, what experiences it will lead to.

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Independence and Interdependence Create Community Success

MountBarton

I am a paradox in many ways. Who I am, my beliefs, values, and actions simply contradict one another on the surface.

On one hand, I can be fiercely independent and determined that if I believe I can do something, I will give my all in an effort to ensure that it happens. On the other hand, I am reliant on others for many of my basic needs.

Independence and Interdependence

We each are part of the whole.

I can be so sure of myself and my abilities, that I charge, headlong, across the country toward a life I am sure to be more fulfilling. At the same time, I’m never afraid to ask for support from friends or strangers to help fill in the gap that I know I can’t manage on my own.

I can be a spiritual recluse, journeying alone to find my personal connection to the divine. Then enter a community and offer leadership through insisting that every unique voice is heard and valued through collaboration.

I suppose with all of this, it is inevitable that my intended message of inclusion and inter-dependence would be misunderstood. It is my firm belief that individual success and independence is founded upon the ability to relate to others in the community, both giving and receiving when needed. It is only through this impeccable balance of mutual exchange that one can foster a sense of independence and success.

A perfect example is: Megan and I need an accessible van so that we can continue to serve through speaking, and leading workshops, and create the impact in our community that we feel is our calling. It would be arrogant of us to believe that we could do this alone, without asking for help from anyone, and forging ahead without our community at our side. Even worse than this arrogance, it would lead us to a situation where success would be an impossibility, for in taking this burden on ourselves, we would be alluding ourselves to a world in which we would not be able to serve others as we intended.

For many of us, there can be a great sense of pride, and accomplishment in overcoming a great hurdle on our own, and indeed, there are times when this may be appropriate.

However, what limitations do we place on ourselves in such an endeavor? Do we limit our ability to serve a greater purpose? If we deny supporting others out of a sense of ego, is it not easy for us to ask for support. Particularly something that may appear to be quite large in expense?

From my perspective, it requires a huge willingness to be vulnerable, to expose ourselves to the community around a seemingly impossible need without knowing the precise avenue or outcome. The exchange here is not necessarily a direct one, as it is in business, in the handing off of one set of products or goods for services.

No, this exchange will create an impact down the line. It will allow us the ability to empower others with and without disabilities to live more fulfilling and inclusive lives. Our ability to interact with those individuals enhances their potential to make the same community impacts, rippling out and shifting the paradigm of what it means to have a disability and to live engaging and productive lives.

Check out our Pay It Forward Campaign: http://www.gofundme.com/3393f8
For every $50 we raise, we will contribute an hour of service back to the community!

Contribute and be sure to add a note that says:
Please contribute (hours) towards (organization from the choices below) in honor/memory of (name).

The organizations we will be gifting time back to are:
Read and Feed
http://www.readandfeed.org

Raleigh City Farm
http://raleighcityfarm.com/

Habitat for Humanity of Wake County
http://www.habitatwake.org

Contribute $50, and we’ll donate a full hour of service to the organization of choice. For those that would like to donate $25, we’ll contribute .5 hours for the organization of your choice.

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Self Care for Caregivers and People with Disabilities

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Let’s get real. Self care sucks, but it feels so good.

Barton and Megan travel to Randolph, NH every year to relax, decompress form technology, reconnect, and breathe that beautiful mountain air.

Barton and Megan travel to Randolph, NH every year to relax, decompress form technology, reconnect, and breathe that beautiful mountain air.

For most caregivers, family members of people with disabilities, and let’s face it, any parent or active community member out there, we’d much rather be serving and doing than being. We’ve got meetings, doctor’s appointments, driving here or there, projects to finish, deadlines that are past due, a million things to do.

Most of the time, it’s not even for ourselves. It’s for our family members, children, community, business partner. And when we don’t have the energy, stamina or motivation, we are a cranky bunch.

This happened to me several years ago, when I thought getting up at 4am was late, I was only eating two meals a day and there was a to-do list that ran several pages long. And even though my mentor and I have talked about self-care on numerous occasions, in many variations, I continue to fall back. I know I need to take better care of myself, but there was just never enough time. “I’ll do it tomorrow,” I’d say. I was not pleasant to be around; just ask Barton.

Last week was the first week I had woken up early and had written morning pages in my journal, like I used to. And when I thought about when and why I had stopped, I was astounded. I remember being on a trip in Scotland with my family, and I would wake up early to take a walk in the hills on Skye, reflecting on the history of my family and connection with the Celts. At one point, my dad came up to me to say how my getting up early was disturbing my brother. While I was able to get my own room, I also felt in the way, like taking care of my needs was disturbing others. Unconsciously, I stopped. And even though I would write in my journal, it was never in the same way.

I wrote multiple pages in my journal everyday, consistently, and felt fabulous! After a week of writing by candlelight in the dawn of the day, I feel more focused and refreshed for the day because I am tapping into my creative flow.

The same thing goes for swimming. At one point I had even posted on my Facebook Page: “I am looking for an accountability partner, as no matter what else is going on, I am committed to swimming once during the week and once on the weekend.” Why, is it then so hard to get into the pool, even though I know I’ll feel so much better when I do?

There is an assumption that our needs can be last on the list, they can wait another day because what’s really important is the project, the person, or the cause in front of us.

Recently, one of my mentors asked me, “How devastating is it for you not to take care of yourself?” Not bad, not awful, but devastating. It is devastating to my husband and my community when I don’t take care of myself.

Wow- that shifted my perspective.

Here is my list of tips for self-care, and I’m working on them, too. So they are reminders for us to come back to again and again.

Tips for Caregivers (or you may have to create your own):

1. You can’t take care of anyone else unless you are taking care of yourself. No matter what else your inner-voice says.

2.What is as important to you as breathing? Defining different types of self-care is important.

Examples: Training in martial arts with Barton is learning how to protect myself and others, finding openings, and learning how to move through difficult situations. One-on-one Pilates instruction without Barton allows me to completely focus on own body movement (and there’s a distinct freedom in not having Barton there). Swimming helps me let go of strong emotions and clears my head. Morning writing allows me to tap into the creative flow for the day. A week in New Hampshire allows for us to unplug from technology and reconnect with each other.

It’ll be completely different for you, so look what works and how these components fit together.

3. Find a consistent routine, or take out non-negotiable time. The world could fall apart, and it’s okay because you are hitting the pavement with your sneakers. I have a particular hard time with this one, but the drop everything it’ll be there later, attitude helps.

4. Let go of the guilt (this is a big one). When we get off track, we feel guilty about not doing what we know we need to do, and this keeps us away from getting back on track. Berating yourself isn’t the way to recover. Getting back on track means doing it anyway, no matter how long it’s been.

What is your biggest struggle or success in self-care?

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Finding Balance Through Laughter: A Night of Comedy with Josh Blue

Last night, Megan and I had the unique and wonderful experience of going to see a live performance by Josh Blue, winner of Last Comic Standing, at Goodnight’s Comedy Club. It was a much needed opportunity for the two of us to get out of the house and just have some good old fashioned fun with one another away from the stresses of work and trying to manage accessible transportation issues.

In fact, last night was so good for my heart, one which is regularly prone to fits of laughter, that I woke up this morning with the muscles in my cheeks and jaw still tingling with a relaxed soreness. It was indeed an exercise of smiles and belly quivering that my body as well as my soul was in dire need of.

Frankly, prior to last night’s show, I was only aware of Josh Blue and his hilarious workings only peripherally, from what I had heard through others. And I was amazed at how his show surpassed all of my expectations. I think a good part of this was independent of the fact that he is an outstanding comic, and was also because I related to many of the situations he was describing. It was indeed far more intimate because of this uncanny recognition of life with Cerebral Palsy that made my appreciation of his work even greater than I suspect other audience members.

Even more special for me, however, was the way that I was able to share such a light-hearted and belly-shaking experience with my love, Megan. Many of the situations that Josh set up in his routine were not only familiar to me, but resonated with both of us, as an inter-ability couple trying to navigate in a predominantly able-bodied world. For me, there was something special about how I saw Megan able to appreciate his comments around spasticity, describing how incompatible those of us with spasticity are in our attempts to relax into what many may consider to be normal positions.

Josh Blue with Barton and Megan Cutter

Laughing it up after the show.

Josh Blue’s line, “Just imagine trying to make origami out of plywood,” somehow encapsulated my experience with CP, and both Megan and I seemed to be at least thirty-seconds ahead of the crowd, as we inadvertently jumped to the punch line in our minds and burst out laughing before Josh had even spoken a word.

During a conversation only days prior, Megan and I were reflecting on how vital it was for the two of us to set aside time for pure unadulterated fun. We explored how, in many ways, we were both feeling that this need to bring fun and laughter into our daily work was vital in helping us maintain a healthy balance.

This has become more and more apparent to us in recent months as we have meandered through various avenues to track down accessible transportation, an endeavor that, because of our understanding of how this would impact our ability to serve, has become weighed down by a sense of urgent necessity. Certainly not the most fun endeavor we have undertaken in recent months. We have also felt the need to reconnect and refocus around the work that we hold so vital in empowering others.

For us, fun is not only necessary, it is a core component of what makes us successful in our ability to live and love so freely and openly.  It also reflects to others how they too are capable of building new possibilities when we approach life from the perspective of playful adventure.

I am looking forward, now, to the opportunity to search out more of these experiences with Megan, and laugh hand in hand as we move forward into the fun of our work and life.

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