Shifting Attitudes: Perspectives of Personal Assistants

August 27, 2009 at 4:47 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | Leave a comment
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We’ve just started with a new personal assistant in the morning for Barton. It’s great because some of my best writing flows before 8am, and it’s been a busy week, so there’s been a lot to do in the morning. I don’t have to worry about getting both of us ready for the day- I can go ahead with my schedule without worrying about what Barton needs. Being a married couple and adding a personal assistant in the mix can be quite a challenge. It’s can be a little weird, rolling out of bed to let someone into your house at 6am- it’s a pretty vulnerable position to be in, for both of us.

We noticed something interesting, though. Last week, Barton’s personal assistant began asking questions- how did Barton eat lunch, was he okay at home alone, how did he use the bathroom during the day, what agency/program (SDD) did he use, what did he do while I was gone all day. It wasn’t so much the questions, because we are so open and would gladly answer them, but the attitude behind them. While Barton told her he had a full-time contract and worked, she didn’t really believe him. (There we go again, bursting illusionary- bubbles).

Not only that, but his personal assistant began asking me questions- the same ones as well as some others. Not realizing that Barton has already told her, my answers matched his- although looking back later, I realized how I should have just deferred the questions back to Barton since they weren’t really mine to answer. Both Barton and I felt devalued, not just as individuals but as a married couple. As a man, and as a husband, he felt his assistant judging and mothering both of us.

For example, if Barton doesn’t want to eat lunch, he doesn’t eat lunch. He can make his own decisions. Now I can do the wife-nagging bit, but I’ve learned it doesn’t work very well with Barton- it really only pisses him off. So I’ve learned to back off & let him handle it. And if he needs help during the day, he has gotten to know neighbors in our community or figures out how to get the assistance he needs. And I trust Barton, in guiding our family with the decisions that he makes, like when we moved to North Carolina. 

This morning, Barton spoke with his personal assistant about his feelings, pretty openly, and amazingly, she was open enough to listen when he told her I wasn’t his mother, I was his wife. We don’t know if her attitude will shift, but I felt Barton become more empowered by addressing these issues head-on, and I felt her attitude shift as she heard him and she spoke about him being an inspiration to live so independently. There’s not a day that goes by where we aren’t learning how to shift perspectives, in others, in each other and in ourselves.

Barton Published an OpEdPiece, published in Raleigh’s News & Observer about how personal care assistants are often devalued in their work.  


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Walking Down the Aisle

August 17, 2009 at 2:00 am | Posted in Megan's Blogs, Our Love Story | Leave a comment
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93_2When people ask us about our wedding, Barton & I look at each other, and our faces light up. I remember before we walked into the church, my father’s advice to be present and remember each moment of the ceremony, and I do remember Barton’s incredible smile beaming down the aisle as we approached.

 I knew that Barton was planning to walk us out of the church after the ceremony, and that this was the first time his family had seen Barton stand and walk publicly. At the dress rehearsal, it was the first time we had tried walking down the ramp together, and we had slipped on the surface.

Barton stood for over an hour during the ceremony, and the ceremony was truly unique. We even had a special way that Barton could slip the ring on my ringer; rings that a friend & jeweler custom made for us. I remember when we saw our rings before they were crafted and polished, the process of alchemy was truly at work. We had written our own vows, and we had homemade bread and wine for the Eucharist, made by dear friends of ours.

As we set up to walk out of the church, I remember holding onto his arm to go down the ramp. At the bottom of the ramp, we looked at each other with the delight of  “We actually made it!”

To have Barton walk me out of the church was one of the most blessed moments of our ceremony.

 

Walking Down the Aisle

Walking Down the Aisle

 

 

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The Glow About Her

August 17, 2009 at 1:52 am | Posted in Barton's Blogs, Our Love Story | Leave a comment
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Barton and Megan's wedding ceremony.

Barton and Megan's wedding ceremony.

In November, Megan & I will celebrate our 5th year anniversary. It’s funny that it really doesn’t feel as though it’s been that long. At the risk of sounding extremely cheesy and like every other hopeless romantic on this planet, it was such an incredibly wonderful day. I still have to wonder how I ended up with such an amazing woman. I know I sound like every other guy that loves his wife, but Megan was so incredibly beautiful.

I remember about ten minutes before I walked into the church. My brother Andrew and I along with several other groomsmen were standing outside the church waiting for the okay to go in after Megan finished her pictures. The sky was overcast, and I was beginning to wonder if we were going to get rained on, when Megan’s maid of honor came out to give us the go-ahead, we headed for the front door and just as we opened the door to go in, the clouds broke and a shaft of light broke through and embraced the whole grooms party.

At the opening procession, after I was situated on the alter, I remember feeling my entire body pulsing with anticipation. As Megan rounded the corner to come down the church aisle, the same shaft of light came through the stained glass dove, touching her on the crown on her head, I have never seen my love so radiant and beautiful as that moment.


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The S-E-X Word, Oh My

August 10, 2009 at 1:50 am | Posted in Megan's Blogs, Our Love Story | 5 Comments
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Dancing at our Wedding Reception

Dancing at our Wedding Reception

Now, we won’t divulge all of our secrets over the Internet waves, but we will address intimacy, because there are still so many assumptions concerning those with disabilities and love/relationships. When I was working in the corporate world in Alabama, I would tell my friends or co-workers about Barton (at that time, no one had met him yet). I was unprepared for all of the questions about our intimate lives. While it might have been inappropriate for me to ask my co-workers about their private lives, I was hit with a barrage of questions and comments.

Well, how do you…you know? Can you…? So you’ll adopt children? My all time favorite, by a close mentor in fact, Well, does the plumbing work? Over and over I heard, You poor thing (the assumption I would never again have sex in my life).

There is an assumption that people with disabilities are asexual beings, so their partners and families must obviously be asexual as well. While it was so tempting to come up with snide retorts to these remarks, I realized that people weren’t trying to be rude, they just didn’t know. All of a sudden, Barton and I found ourselves in a position of opening people’s minds up to the possibility that yes, people with disabilities can create healthy intimate relationships.

Yesterday, I was riding in Barton’s lap down the street, all dressed up since we were headed to church. We noticed smiles from people driving by, who could see our obvious connection. Nearly everywhere we go, we continue to break down assumptions that people with disabilities can’t or shouldn’t have intimate relationships or families.

We almost fell into that trap, listening to the concerns that we shouldn’t get married. And we realized that while those who loved us may  have had valid concerns about where we would live and how would we manage (there’s that manage word again), we had to follow our hearts, no matter what anyone said. If we had listened, we wouldn’t have found the love and connection that has sustained our marriage, through the tough times as well as the joyous ones. 

So, you’ll have to wait until the book comes out to get all the juicy details, but yes, Barton and I are just like any other healthy couple in love. Just ask us…


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The Delicate Balance of Balance

August 6, 2009 at 11:41 am | Posted in Around the House, The Nitty-Gritty | Leave a comment
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Barton and Megan in the gardens at Cambridge, UK.

Barton and Megan in the gardens at Cambridge, UK.

This week has been all about bringing balance back into our lives. Last year, when Barton’s help quit, it was difficult. The economy was sinking, and like everyone else, we were watching our pennies. Not only that, but it was hard to find someone to come to our house at 6:00am, since Barton needs to get up fairly early for work.

So we decided I would help Barton get up in the mornings for a while, just until we felt like we could afford it. We’ve done this before since there is always a gap in between assistants. Our workload also shifted, and before long, I found myself stepping in and doing more than I usual, and feeling the pressure. It’s very important to both of us to keep our relationship as a husband/wife, not caretaker role. 

Two shifts occurred this week. One- I am writing this blog while our new help is getting Barton ready for the day. The other, we worked with Nancy Davison of Elite Integrated Medicine, who showed us how small shifts in how we work together during transfers (wheelchair to bed, wheelchair to car, etc.) can make a huge impact in other areas of our relationship. We began working together in a different way, a more balanced way that enhances our relationship.

Making these shifts creates a huge impact, and takes continual maintenance. Barton sees me doing what I love & taking care of myself, and I see Barton taking on more responsibility. While we still experience stresses & joys of the day, we are both connected and working together more effectively, using each others strengths, and having a lot more fun.

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