Blazing the Path to Innovation: Disability, Travel and the Willingness to Explore

MountBarton

So here we are, Megan and I have been in our MV-1 for only a week, and we are already tearing up the road and blazing trails.

While the excitement of receiving this wonderful vehicle has been far beyond words and shifts within my personal independence and the dynamic within our relationship have already been apparent, what has struck us the most is the reception of the vehicle by others.

As we have driven around town and beyond, we find that quite often those in other cars next to us glance over in surprise and curiosity at what exactly this hybrid SUV/British taxi/car/van is. Like much of the way we choose to live our lives, it is hard to put words to decisions and paths that are new and often undefined.

The MV-1, for us, is no different. There is a level at which while this intangibility perplexes everyone, including us at times. Yet, there is little that we can say to explain why we were given the urge to move in a certain direction, except that it simply feels like where we are being lead.

Barton Cutter enjoys the North Carolina Coastline.

Barton Cutter enjoys the North Carolina Coastline.

Did you know that Interstate 40, which runs from Wilmington, NC to Barstow, CA spans 2,555 miles, running completely from the East coast of our continent through the center of our country to the Western shore?

I wonder what would have happened if after the formation of the original United States if the new settlers and frontiersmen had never dared to explore what was further west, and instead, simply accepting the tried and true method of what had been before. Certainly, the US would have never expanded all the way to encompass the full 2,555 miles, and I even find it hard to speculate that the country itself would have ever been founded.

A friend of mine who recently congratulated us on the van commented that he had watched the evolution of the MV-1 over the past several years and was curious about its capacities and how they might benefit him and his family. He went on to mention that he would rely on our experience to serve as solid proof of its success.

There is so much that is lost when people are willing to sacrifice innovation for what appears to be safe. And yet, at the same time, I completely recognize how terrifying that first step can be, particularly for those who rarely venture beyond their comfort zone.

This approach seems to be difficult for many people no matter who you are, and yet, it seems particularly difficult for many families and individuals impacted by disability.

For whatever reason, whether through cultural training or by necessity, there seems to be a keen necessity among many of us with disabilities to focus on what are perceived as tried and true methods, showing limited interest in anything that has little to no proven track record. Unfortunately, in my experience as a life coach and mentor, this reluctance to explore beyond what has been proven has, from my perspective, become a major barrier to innovation among many in our community.

Fortunately, however, I was not built this way.

It seems at every turn, I have bucked the system, turning sharply away from the tried and true methods of others to forge my own path.

Barton and Megan Cutter at the Run for Young

Our first 5K Race, the Run for Young in downtown Raleigh.

Along the way, Megan has joined me in that journey and as she has learned to trust this intuitive approach, has drawn to me in that excitement that life can offer when you’re facing the unknown.

We push the boundaries of innovation when the newness of an experience is too overwhelming for others, and we often expect that they will eventually wake from relying on us or one experience to look within themselves and discover their own avenue for freedom and innovation.

Posted in Barton's Blogs, National Mobility Awareness Campaign, Ramblings, Uncategorized, wheelchairs | Leave a comment

Success Comes Through Motivation and Perseverance: Barton and Megan Cutter Purchase MV-1 Accessible Vehicle

For the last few years, we’ve been on a journey toward full mobility for Barton out on the road. Megan’s non-accessible Honda had lived through 255,590 miles of experiences, and it felt like the Honda was part of who we were for so long. If you don’t know what we mean, check out this awesome story from Snap Judgment that beautifully expresses the same sentiment.

Barton Cutter needs a new accessible van

From this…

But the reality is the Honda Civic was done. Before long, we knew we would be walking on the streets. And, Barton could never be fully independent when we travelled in it anyway.

What does not having transportation do to a family?

Certainly we have had those feelings, not knowing how to get Barton to work, or having to turn down workshops, seminars, networking events, outings and travel excursions because we just couldn’t figure out how to get there.

One night Barton had an after hours meeting across town. And while we had contracted an accessible taxi, there was a miscommunication between the driver and dispatcher, which left Barton waiting on the side of the road until after 11pm.

As independent as we are, not having reliable transportation is like living in a cage, and not being able to get out.

We were determined not to stay there.

We entered the NMEDA Mobility Awareness Contest, and Barton even made it to the semi-finalist level in May. Didn’t make the final cut. We approached accessible dealers and manufacturers to be a spokesman, especially since we had just published our memoir. Not interested. We were thankful to Van Products, who sponsored several of our speaking engagements in early 2013. We tried to reach out to celebrities known for their compassion and generosity. The crickets were even silent. We started a Go Fund Me Campaign, and we received a number of donations from close family and friends. But it just wasn’t good enough.

As much as it sucks, sometimes the answer is going to be no. Or not right now.

We decided to give back to the community knowing how important it was to reciprocate those who supported us; and we finally peaked the interest through crowd sourcing, and caught the eye of The Mobility Resource. Author Jeff Gorman’s article was republished by The Huffington Post! And still, there was a big funding gap.

Did you know that a new BMW featuring the top level of green efficiency costs around $42,000. And families affected by disability are required to come up with more money than high-end sports cars? It’s a little crazy.

Average models of converted accessible mini-vans can cost up towards $55,000 to $65,000 and we knew we just couldn’t do it on our own. But we were determined not to give up. Over the year we strived on, frustrated, hopeful, excited, devastated, hopeless, depressed, thrilled—a whole range of emotions ran through each of us.

Not only that, but we brought many others along for the ride. Our friends, family and colleagues were also disappointed we didn’t win the NMEDA contest, they heard our struggles to regroup and move forward, our conflicts of cost and reliability, our struggle over getting to work and events, and our dreams of “if only we could…”

In the end, all it took was one comment, one phone call, one day, and a lot of luck.

After an amazing jazz fundraising event hosted by a phenomenal community at Christ Church of Raleigh, we knew we had given it our all, and it was time for us to go to work. We researched van models, type of lifts/chassis, and compared mobility manufacturers. After hours pouring over research, we still only had a very small list of workable options.

What we truly wanted was completely out of our reach. But maybe we could handle one of the lower end models. We wanted to feel good about our decision, because it would get us from point A to point B, but Megan had to be honest and say there was a part of her that knew it just wasn’t right.

After a full weekend of research and debate, Megan put a comment on Facebook that Monday, about her excitement the possibility of accessible transportation. And yet, there was still a resounding no! A number of people had poor experiences with the particular vehicle we had landed on, commenting on short life spans and major repair bills later on.

Certainly, when you take a manufactured product, gut it out, add hundreds of pounds of metal, hydraulics, and a motorized ramp, it’s going to dramatically shorten the lifespan of any vehicle.

Yet, in that social media thread that talked about cost vs. reliability, someone made a comment about MV-1. Megan forwarded her Facebook comments, in a moment of disappointment, to Barton. At which point, Barton’s curiosity took over, and he began to dig a little deeper. He found several sites on the MV-1, one of which was a dealership in Florida.

He then sent this particular site back to Megan, as it had a nice variety of pictures of the vehicle. Not knowing much about them, Megan followed her gut and called the dealer to ask, “Why was there no stock in inventory?”

Barton Cutter in an MV-1 accessible van.

To this…

The story of the MV-1 is that of an underdog, much like our own! Hailed the new way of accessible transportation in 2011, MV-1 was being used as accessible taxicabs and expanded their market to the disability community. Yet, the company was not able to keep their doors open due to a stalled federal loan, and they paused production in early 2013.

But their story doesn’t end there! Recently bought by Mobility Ventures, a subsidiary of AM General, full production of their new line will begin in February of 2014, and they are now a full member of NMEDA. Mobility Ventures is still working on improving their model for the consumer market, such as mpg and addressing how drivers with disabilities have access to the driver’s seat. Since Megan will be the primary driver, we feel the MV-1 will fit our needs well.

The Orlando dealer had not seen an MV-1 in some time. But—just before Megan’s call, a lightly used 2011 factory model under the old company name had just come in.

Two days later, we put down enough to hold the vehicle so we could make a decision. And—ironically Barton’s family, who fully matched our fundraising efforts, was going to Florida just before Christmas, not too far from the dealership!

We persevered through so many challenges with this experience, we didn’t take the easy way out, we had a lot of help to get there, we felt disappointment and disappointed people along the way and still persevered, and we believed that if we could just hang in there long enough, it would happen.

AND WE (ALL) DID IT!!!!!

This blog isn’t just about us, though. It’s about you, too. What challenge do you have ahead of you that seems impossible? As we have brought others along for the ride of struggle and disappointments, in this success, we have given others hope that if they just hang in there long enough, they will overcome their own challenges.

There are so many supporters to thank:

Barton Cutter in an MV-1 accessible van.

Barton trying out the ramp (up, down, up, down).

We want to thank, honor, and acknowledge Barton’s family and extended family members, Megan’s family and extended family members, Sam House, Helen House, Go Fund Me, all Go Fund Me contributors, Katie Empie, Jeff Gorman and Jennifer Gorman, The Huffington Post, The Mobility Resource, Christ Church of Raleigh, Betty White, Ginny McKay, Van Products of Raleigh NC (who sponsored transportation for our book release events in the spring and summer), Steve Potts, Ann Hillman Lamy, Kate Leaming Goldberg, R-MWC alumnae & classmates, everyone who took time out of their day and endless effort until the very end voting for us during the NMEDA contest, and so many others who made this dream a reality!

THANK YOU!!

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Disability and Relationships: This is No Cookie-Cutter Life

MegaWave

What is it to live a courageous life?

Barton and Megan Cutter at Living Well with a Disability Conference

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

That was the question I pondered for the past few weeks, during a time when I reflected on fabulous excitement of publishing our memoir and the past year of speaking to people with and without disabilities. And, also at a time when the challenges of transportation and other transitions came barreling in.

In 2007, when one of Barton’s grants ended, there was this sinking feeling when he found out there would be no temporary or permanent extension. I did not take the news so gracefully. I felt I had no control to what was happening to me, and I was clasping at anything I could, even lashing out in the process.

We’ve all had times in our lives when we felt no control, and tried to hang on for dear life.

It’s been a life-long lesson for me, as I have held onto things much longer than I needed to that no longer serve my life purpose.

This time around, however, there is a feeling of resiliency, that whatever transitions and changes will lead us to ultimately where we are called to go in our life’s vision. And the challenges along the way teach us, keeping us flexible and pliable.

There’s an acknowledgement that I will never live an ordinary life—it will always be a “life on the edge.”

That’s what makes it so exciting.

There was the time when we moved with only a few weeks notice, when we realized the location where we had put down a deposit for an apartment wasn’t in the best part of town, where we met a detour sign pointing to a flooded road, and the numerous trips on the road in crazy weather…

Our primary mission with Ink in the Wheels: Stories to Make Love Roll is to bring a starting point for discussions (for all people no matter what ability, life stage, race…), and one example of how one couple is making it work, to give others encouragement, motivation, inspiration, and to know they aren’t alone during times of challenge.

Barton loves this picture of Megan on their wedding day!

Barton loves this picture of Megan on their wedding day!

But to us, these are our memories shaped by the times of pure joy and celebration, exhilaration of leaping into the unknown, moments of utter failure and despair, precious places of connection, and those moments where all you can do is laugh at the absurdity of it all.

This last week was a whirlwind: we had two workshops, a conference, the last dinner meeting for a contract (we think) is ending at the end of the year, training for Barton’s 2014 ambassador position, and the anticipation of hearing from a new opportunity for more speaking (whew)—AND the celebrations of our wedding anniversary, the anniversary first time Barton walked, and upcoming is Thanksgiving, when we got engaged.

Yet, in the midst of running from here and there, we took an afternoon to cuddle on the couch under our blue and white Navaho blanket to relish in our connection with each other and enjoy the most amazing fire with a treat of wine and melted brie.

In that moment, nothing else mattered. We were there, breathing life in, and time stood still.

Crazy Wheelchair Photos

Barton and Megan laugh and live, even in the midst of challenge.

Taking this time out gave us reflection on how much we have been able to accomplish this year, where we dream of going, acknowledging places where we could do better, and just delighting in the connection of each other.

And as we go back into the fray that makes up our our extra-ordinary life of work and service, we move forward courageously together, knowing we are both striving to be better, to overcome challenges, and to make an even greater impact on our community and the world.

There is not much more we could ask for!

If you haven’t seen us on Disability.gov, check out our guest blog post:
Inter-Ability Relationships: A Journey Toward Understanding

And check out Barton’s latest guest blog post on The Easter Seals UCP Living Without Limits Blog.

Posted in Megan's Blogs, Our Love Story, Ramblings, The Nitty-Gritty | Tagged , , , , , , , | Leave a comment

Laughing in Life: Our Mobility Funny Photos are Back!

Crazy Wheelchair Photos

Barton and Megan laugh and live, even in the midst of challenge.

When life gets challenging and find ourselves surrounded by fear, we take a breath, and keep going!

When Barton was a part of the NMEDA Mobility Awareness Month Contest, we created a movement. And the best part was how people loved seeing us let it go and let it out there, especially with our funny photographs. Why do we need an accessible van? It can’t be said any better than my Open Letter to the NMEDA!

Need a refresher of our funny photos?

The prospect of upcoming contract changes and mobility loss is terrifying, but even so, we do what we do best. Breathe, laugh, work and move on!

So, by popular demand, the funny photographs are back!! We’re a little crazy, and a whole lot of fun. Our dream: an accessible Honda Odyssey with a side entry motorized ramp.

A simple photo op right? Oh, you have no idea how long to find the balance points!!

A simple photo op right? Oh, you have no idea how long to find the balance points!!

So, if you want to see more, contribute to our Go Fund Me Pay It Forward Campaign!

And in addition to the work we do to inspire families impacted by disability, We’re Paying It Forward to Our Community!

Posted in Barton's Blogs, Megan's Blogs, National Mobility Awareness Campaign, wheelchairs | Tagged , , , , | Leave a comment

Paying It Forward and Having Fun!

Barton and Megan volunteering at Raleigh City Farm

Peeking through the Vines.

In August, we began promoting our Wheels 4 Barton Pay It Forward Campaign, where for donations we receive for an accessible van, we are serving our local community. We chose three local organizations to work with, Raleigh City Farm, Read and Feed, and Habitat for Humanity of Wake County. We’ve started Paying It Forward- and we’re having a blast!

Barton Cutter volunteering at Habitat for Humanity

Cleaning the walls make a great prayer for the family moving in.

 

On September 11th, we spent a reflective and phenomenal day working on a house, which is part of a Habitat for Humanity project (finishing 8 houses and starting 8 more in Apex).

And today, we played downtown Raleigh with Raleigh City Farm, planting seeds in a raised bed and cleaning up trash and vines that surround the farm plot.

Later this fall, we’ll go through volunteer training and read to at risk youth, collaborating with Read and Feed.

Barton and Megan at Raleigh City Farm.

Barton and Megan at Raleigh City Farm.

What we’ve learned through this fabulous project:
• Volunteering is a great way to meet new people in the community making a difference.
• Volunteering creates time to serve others, instead of being so focused on the worries and challenges that take up space.
• Laughter and good spirits. Everyone is so positive and optimistic; it’s contagious!

This is our dream, an accessible Honda Odyssey mini-van with a motorized side ramp and a removable first seat so Barton can sit upfront. It’s a tool so that we can reach even more families impacted by disability (and all families)! We’re getting closer, and hopefully by December, when our non-accessible Honda dies, we’ll be able to move forward.

Contribute to Wheels 4 Barton and keep us busy in our community!!

 

Barton and Megan Cutter for Habitat for Humanity

Barton and Megan Cutter washing dust off the walls.

A Poem on September 11th
Dust

Side by side,
we wash dust off of walls
with white rags
moving in slow strokes wall by wall,
smoothing out imperfections
along the way.

As we work, we remember how dust fell on New York City
how streets, cars, and faces were covered
by dust, blood and tears.

We wonder about the soul of this house,
the hands that built these walls,
the lives to be lived inside kitchens and bedrooms.

Each person’s task essential,
creating a community quilt
built upon hope, dedication and perseverance.

We wipe away built-up layers,
creating a smooth surface, ready for a splash of color.

Wringing rags out in a bucket of water,
swirls of murky white
drip down the side.

And we begin again.

~Megan M. Cutter
© 2013

Posted in Barton's Blogs, Megan's Blogs, National Mobility Awareness Campaign, The Nitty-Gritty, wheelchairs | Tagged , , , , , | Leave a comment