Turning a No Into A Yes: The Challenges with Mobility and Finding and Accessible Van

To our wonderful family and friends,

It is with a heavy heart and regret to tell you that though we made it into the top 5% of voters for the NMEDA National Mobility Awareness Contest, we were not one of the selected winners. Every family was in need and so deserving of an accessible vehicle, so on one hand, we celebrate those who are now able to thrive with new freedom and mobility, and yet we continue on the struggle and journey to find new avenues for an accessible vehicle so that we can continue our work and life.

Barton and Megan Cutter are in need of an accessible van.

Barton and Megan Cutter are in need of an accessible van.

We are working on a Plan B- jokingly on Saturday I posted on Facebook how the mileage on the car (’99 non-accessible Honda Civic) was a palindrome & that it had stopped, again, in the middle of the road. Very soon, our circumference for mobility will become a 5-mile radius- hey, at least we can walk to the grocery store! So we can’t wallow in our sadness, we must persevere and find a way, though we don’t what that is yet.

During the last few months, we have felt your support all around us, and we cannot thank you enough. So many of you joined us on our journey and joined in the fun of pictures, postings, emails, voting ranks and keeping tabs on where we were. We are deeply thankful for all of the support we have received.

We will need help moving forward, exhausted from the weeks of postings and the emotional drain of hoping for something so much, only to fall short.

What now? While we are working on a full strategy, here’s where we are beginning.

* We have set up a Go Fund Me Campaign http://www.gofundme.com/3393f8 with the full amount of the van, though if we can receive just enough for a down payment, that may propel us just enough over the edge and jumpstart us into gear.

Couldn't you see this smile on the Ellen Degeneres show??

Couldn’t you see this smile on the Ellen Degeneres show??

* Get Barton and Megan on the Ellen DeGeneres show!! Couldn’t you see Barton and Ellen bantering jokes back and forth! Here’s the link to tell her why we need a new accessible van and why we would make the perfect guests (and humor has to be in there somewhere): http://www.ellentv.com/be-on-the-show/441/

* Petition NMEDA (http://www.nmeda.com)  and BraunAbility (http://www.braunability.com) to be a Spokesperson. We are out in public speaking and changing the way people think about relationships (no matter what the ability). What we learned is that so many families have been disempowered, feel like they have no where to turn, and are on the verge of giving up. We believe we could help shift this paradigm and restore hope. In addition, we have reached and opened up discussion and dialogue with regards to many issues including fertility, depress, dating and communication. We aim for a story of possibility, hope and empowerment. If you feel inclined, write to one of these staff members to petition Barton to be a public spokesperson, something he is already doing!!

* Help Barton and Megan out– a few of you went above and beyond the call to support us, and we may be doing things like starting a van FB page, sending emails, researching people who may be inspired from our story. If you’d like to spend even just a few hours of your time (which we know is precious), send us an email and when we get a full strategy in place, we’ll keep you in the loop!!!

In many ways we feel like we have let you, our wonderful community of supporters down, but we will not give up. We will continue on our journey, and hope to continue to inspire, motivate and empower those with and without disabilities to overcome their own challenges in the process.

With much love,

~ Megan and Barton

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An Open Letter to NMEDA: National Mobility Awareness Month

An Open Letter to the NMEDA Community

Barton and Megan Cutter in Tucson, Arizona.

This is the first time Barton and I met in Tucson, Arizona.

I met Barton Cutter on February 15, 2003 at a friend’s house in Tucson (at the time I was living in Tuscaloosa, AL and Barton was going to the UA in Tucson, AZ). There was this murmur, “Barton was coming.”

I didn’t know what all of the commotion was about, but I do now. Two things happen when you meet Barton: 1- you will smile, laugh (or both) and 2 – he’s going to knock your socks off, as I mean shatter any assumptions you have, not just about people living with a disability, but he’ll shatter your own limiting beliefs, about yourself.

Our first introduction was literally just a few minutes and then he was off, but in that timeframe, Barton knew I was the one for him, he just knew.

Barton and Megan Cutter train in bujinkan budo taijutsu.

Barton and Megan Cutter train in bujinkan budo taijutsu (this was the weekend when Barton met my dad for the first time)!

And I’ll admit, my first thought was, “How can he possibly train in martial arts in a wheelchair?” Of course, I found out the first time I trained with Barton at a martial arts seminar (yes, he did flip me over his wheelchair), and somewhere along the emails and poetry we sent back and forth to each other after that, we fell in love.

I didn’t marry Barton to “take care of him.” I married Barton because he challenges me, everyday, to be a better person than I am today. He brings laughter, love and an open and honest spirit to all aspects of my life. I never thought I would have so much joy, and such an adventurous life. We go through challenges, failures and worries, just like any other couple, and we find the love that has kept us together through it all.

Barton and Megan in Chicago for Christmas.

Barton and Megan in Chicago, where Barton grew up, for Christmas (and Megan is a Southern Girl).

We are asked so many questions about how we fell in love, and nearly everyday we open conversations and dialogue to those with and without disabilities. We openly share all aspects of our marriage in our memoir Ink in the Wheels: Stories to Make Love Roll (http://inkinthewheels.com/for-the-press/ ), because it was so important to open the conversation and dialogue around inter-ability life, love and marriage. Barton didn’t want it to be just “another love story.” We had to be so vulnerable in opening up our story, our real story.

Our wedding ceremony- the first time he publicly stood, something doctors told him he would never be able to do! Barton stood and walked us out of the church- no one knew he was going to do this!

By sharing these experiences, we break down barriers and opening dialogue to topics such as intimacy, family dynamics, depression, having children, and the wacky adventures we find ourselves in- to people with and without disabilities. We are making a national and international impact with our story, and our vision is to speak to those around the country. Barton has received inquiries around the world with questions of living, dating and marriage with a disability.

Our first book release event for Ink in the Wheels: Stories to Make Love Roll.

Our first book release event for Ink in the Wheels: Stories to Make Love Roll. (We were just a little excited!)

Yes, the week after the book release the engine light came on to my non-accessible little white Honda Civic, and we found out it was literally falling apart at 250,000 miles, making travel outside of our local area impossible. The week that was the pinnacle of our success and the start of the work to do, I cried for several days knowing it would mean that we would have to limit our impact. But we couldn’t say no to the speaking requests we were receiving, knowing that we have a chance to reach families and individuals with and without disabilities. We were determined to find a way.

On Stage in Manteo, NC.

On Stage in Manteo, NC.

As a short-term solution, our local Van Products (http://www.vanproducts.com)  has been so generous to sponsor the speaking engagements we had already set up so we didn’t have to cancel them. I want to share one of those with you. This last week, we went to Manteo, NC on the Outer Banks for a featured reading and open mic. While we shared our own story and read from our book, we also celebrated those of all abilities to share their own gifts of poetry, song and dance. Afterwards, we found out that when several participants who had been a part of this program were so shy, they would not even speak or sing, and here they were on stage, confident, vibrant and sharing their gifts with the community. Everyone in that room was moved. The director of the Dare Community Center emailed us:
“I have received several calls and visits today from people in attendance about what a great evening it was and the biggest question is, “When are they coming back?” Please know you are welcome here anytime and I hope you do return soon. I believe it was the best event we’ve had since opening in 2009.”

This is what we hope to bring across the globe, that those with disabilities have gifts, talents, and value.

Barton Cutter

Barton Cutter shaves his head in support of St. Baldrick’s and several close friends who are battling cancer.

When Barton first began coaching, and both of us coaching together, what we realized is that the disability community has been so disempowered through a model of fear, the can’t factor (being told you can’t vs. being able to explore different options both inside and outside of the system), and barriers that include financial (our #1 challenge). Who asks a young girl or boy with a disability who they want to be when they grow up? Our vision is to let children, families, parents and adults dream again, and reach for their dreams.

All of the children who applied in this contest, many of them will grow up to become adults. This is our mission in life. To support youth, adults and families as they navigate this journey, breaking down barriers and stereotypes in the process.

Barton and Megan Cutter

We’re more powerful when we’re working together!

Why should we receive a van, when there are so many deserving, amazing, powerful and connected families in need? I don’t know. But what I do know is that Barton and I, we can’t do this alone. We have struggled with this issue for so many years, and now we have run out of time just when we need it the most. We need your help to make the impact that will literally change how we see people in relationship with one another.

Barton and I have so many dreams. We want to continue writing, coaching families, adults and youth, and we dream of making a national impact to open the conversation around inter-ability life, love and marriage. We dream of adopting, having just recently come back to believing in the possibility of having children again, and working hard to overcome the financial challenges that impede this precious goal.

Barton Cutter

Barton and I, we have huge dreams to change the world.

An accessible vehicle is one tool that we just haven’t been able to figure out, but is so necessary for us to move forward, in our vision to change the world. Recently, one of our mentors called us “algae on the water.” Our mission is to change the paradigm and the way people think about living with a disability. And our work, if we can reach out, the change will double itself, and double, and double until the tide of change ripples through the water.

Barton in New Hampshire

Barton enjoys his favorite spot.

 

 

 

 

 

 

Two weeks ago, just before the voting portion of the contest ended, Barton was at a meeting across town, and we had booked a taxi van because the buses had already stopped running. When the taxi van was late, at first we thought it was the lift wasn’t working, but what actually happened is the dispatcher didn’t tell the driver to pick Barton up. Barton was waiting on the side of the road until 10:45pm. Barton risks his life everyday, because of his vision and dedication to his vision, work and his family. (We talk about this in our chapter Smoking Buses and other Travel Tribulations- and yes, Barton was on a bus that caught fire). It’s time to break this barrier once and for all!!

As a wife, hopefully mother some day, writer, and speaker, please consider Barton for one of the accessible vans for National Mobility Awareness Month.

With all the hope in the world,

~Megan Cutter

 

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An Update: Barton is a Semi-finalist for The National Mobility Awareness Month Contest

Just a quick update everyone!! Woo-hoo!!

We can’t contain our excitement! Barton is a semi-finalist for the National Mobility Awareness Month Campaign, and he could be one of three people to win an accessible van!! http://www.mobilityawarenessmonth.com/entrant/barton-cutter-raleigh-nc/

Each and everyone one of you helped to make this happen!!

What Can We Do Now?
If you’ve had a positive experience with Barton (or both of us), write a short note of support on the NMEDA FB Page! (You can post a note either in the posts by others/status update, recommendation or comment on one of their posts).

We don’t know if the judges will read our support notes, but the contest isn’t over yet, and we want to share why Barton needs an accessible van, the service that we could do to impact the lives of so many people! And we want to keep these coming in over the next few weeks, while the judges are considering the semi-finalists! 

While we were spreading the word, we ended up with several small-world experiences. Check out how the NMEDA Contest also led us to support St. Baldrick’s!

Did you miss our video with our pictures over the last few weeks? If you did, and you need a smile for the day, you can watch it here!! http://www.youtube.com/watch?v=meZhxY8boAQ

So we’re holding our breath, keeping our fingers & toes crossed and “letting go & letting God” walk us through!!

~ Megan & Barton

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The Last Week of Voting: National Mobility Awareness Month Campaign

 

 

 

 

 

 

There’s three days left, and there’s still time to vote! http://www.mobilityawarenessmonth.com/entrant/barton-cutter-raleigh-nc/

Here’s a look back at the past nine weeks: http://www.youtube.com/watch?v=meZhxY8boAQ

We have just been in awe of the support we have received for the National Mobility Awareness Month Campaign, accessible van contest. No matter what the outcome, we are just so grateful for our community support and the reconnections that were made the past few months.

When we began, both of us were very overwhelmed, crazy busy with the book launch, and balancing two very different schedules. With some encouragement, particularly from Nancy Cutter and Helen House, we embraced this opportunity, because it is the best way for us to solve the huge elephant in the room—my Honda is dying very quickly, the cost to repair the damage to the transmission and underbelly is between $2-4,000, and it is reaching the 250,000 mileage mark this week.

It didn’t help that this week, the taxi van we used was very, very late picking Barton up from an after-hours meeting. At first, we thought the lift wasn’t working, but later found that there was a miscommunication with the dispatcher. Just another reminder how much it would impact us to have a van of our own.

And, we need an accessible vehicle not only for personal use, but to be able to share our story and impact families on a national and international level. We both have dreams of reaching as many families and individuals with and without disabilities. Our book isn’t just our story, it dives into the essence of relationships, and how we explore those relationships as human beings.

When we began to fully embrace the National Mobility Awareness Month contest full on, what we found was a rally of sooo many people behind us, above us, all over the place!!
Just a few to mention:

Nancy and Stan Cutter and Steve Potts who went through all of the contestants multiple times so we could tell where we were in the standings.

Donna Hedgepeth and the boys for being the extra hands to take photos. And Aaynne Himman Lamy, who used her picture magic and helped us create great images to use!!

Anora McGaha who supported us behind the scenes and encouraged us to create a video with our pictures, which we FINALLY did!

Kate Leaming Goldberg who reached out to the R-MWC/Randolph College community, and we both contributed to the Randolph College Blog!

Jen Janko Dragen was able to feature us on one of the Top Mommy Blogs Peanut Butter Hair!

And a huge, huge thank you to our local Van Products who sponsored local events the past few months so Barton could have access to his motor wheelchair! But, they can’t do it forever, which is why we need a van of our own!!

And a list of so many names, we can’t list them all here who reposted on FB, sent emails to their own families, friends and colleagues, and who spread the word like wildfire, we sincerely, sincerely thank you.

With 3 Days Left to Vote, we have over 13,400 votes—and we attribute it to you!!

What’s next? Three days of mad dash voting!! And you know Barton loves to aim high, so we’re hoping for 15,000! Vote here: http://www.mobilityawarenessmonth.com/entrant/barton-cutter-raleigh-nc/

And then we will wait to see when we receive the official word we are in the 5%. After that, an independent panel will choose three winners.

So for the rest, we have to let it go, trust that if this is the right avenue and all the stars align, we will take our words on the road, and if it’s not, we will find an alternate route!

~ Megan and Barton

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Barton Megan Speak- Communication Without Words

In a continuation of our discussion about how Barton and Megan speak in public, or how much Megan translates for Barton, here’s Megan’s perspective:

The first time I talked to Barton on the phone, I tried so hard to understand every word Barton said, but inevitably most of our conversations were filled with, “What?” or “Can you say that again?” I felt so bad, and sometimes I would try to pretend I understood when I didn’t. Barton saw through my pretense right away. But it didn’t seem to faze him to repeat his words, as many times as I needed. If I didn’t get a sentence or word one way, he would try to say it another.

Before long, we didn’t have to speak because that intuitive line between us took over as our relationship grew deeper. There were times where it was hard for me to keep my mouth shut when someone asked Barton a question, because I could get Barton’s speech right away, especially if it was a joke. But we both know how important it is for Barton to speak for himself.

In Barton’s last blog, Barton mentioned this line of communication that can skewed when one speaks for another. I saw this first hand when one of our close friends asked Barton a question and then looked straight away at me to interpret Barton’s answer. This is when we began to talk about how the line of communication gets interrupted when I would speak for Barton all of the time.

There are times, when I’m the one with a big mouth, especially when I get excited!

And, there are times when I get it wrong. At our book launch, I talked about how I normally get about 90-95% of what Barton’s saying. But—when we get into discussions or an argument, I understand about 5%. All of a sudden I can’t hear Barton, and I would tell you that I honestly couldn’t understand him. But it’s actually me, how I listen. Obviously in these places, I am too wrapped up in my own agenda or point to slow down and hear him. I admit, in these places, I have a big mouth.

When we are speaking in public, we vary whether or not I translate for Barton depending on the audience, the location, what our goals are, and what we hope to get across. For example, an an Open Mic, Barton has asked to read poetry on his own so he can explore with his poetry, whereas in a networking event where it may be crowded and loud, I may repeat what Barton says more often. We’re still exploring this very fluid and dynamic sense of expression.

In general, when we mention that it’s okay not to get every word, and invite others to listen to Barton’s intent instead, people understand Barton better. Does it have to do with how hard we strain to get every syllable, and in giving permission to say it’s okay if you don’t understand, we hear more openly? I don’t know.

No two voices are the same! We’ve received several questions about computer board; if it’s hard, why doesn’t Barton use a computer board. While he’ll have to answer to that, what I can speak to is how I work with several writing clients who use augmentative devices or computer boards to speak. On the one hand, it is incredibly freeing to speak on one’s own voice, especially in communicating needs and wants or advocating for oneself. On the other, in general, computer boards are incredibly slow and limited in word choice.

If you have seven words to describe everything you did today—what would you say; if there were eight pages to find lists of words, how long would it take to find the one word you are looking for; or if it took you fifteen minutes to spell out a sentence, would you remember the first word you began with by the time you got to the end?

My guess is that Barton’s language was too expansive, and he was too determined (ie stubborn) to speak solely by computer. And I’m excited for that, after all, we both love the spoken and written language, not only in letters but also in rhythm, tone, and cadence. What an honor it is to slow down in gratitude everyday, and have an opportunity to really hear what someone else is saying—beyond the letters.

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