Navigating Marriage from the Seat of a Chair by Bert Burns

Bert, Joy, Will and Emma acted as LASCI’s reporters in London during the 2012 Paralympics.

Editor’s Note:  This is our second article in a series on dating and relationships.  The first story discussed dating, and this one is about marriage.  Now that you’ ve found your special someone, you might be talking about getting hitched.  Below, LASCI founder Bert Burns, a C6-7 quadriplegic, shares his thoughts on navigating marriage as he relays some personal examples from his own 17-year relationship that began the day he laid eyes on a young recreation therapist named Joy Wetzler.

Q:  As a couple approaches the idea of marriage, what advice would you give for handling family members who are concerned about their loved one marrying a person with a disability?

A:  It’s pretty common for family members to inject their opinions and concerns into your relationship.  This happens with everyone, not just couples that include a person with a disability.  In this case, I say get to know the family of your significant other very well, and let them get to know you. Show them that you’re a regular person who just happens to be rolling, not walking. Show them that and make sure they know you’re looking out for the best interests of their son or daughter.  You love their son or daughter just as much as anyone else would.  Show them how you can make your life together work so it’s not a burden on your spouse all the time.  At the end of the day, concerns are just that. But your relationship is between you and the person you love, and what you do with it is up to the two of you – assuming that you are both over 18.

Q:  How do you adjust your living arrangements to move in together, after marriage or if you choose to do so beforehand?

A: Most of the time, a couple will decide to move together into the home of the person who’s using the wheelchair because it’s already accessible.  The other person’s home may be too, so you just have to decide which place is better in terms of accessibility and still makes you happy as your home.  The biggest concerns when choosing a place to live usually revolve around access to the bathroom and kitchen areas.  Most of the time, couples choose one-level homes or an apartment on the ground floor. If you are moving into a high rise, make sure there’s an elevator.

During LASCI events, participants will often ask Bert about dating, marriage, parenting and other questions about family relationships.

Q: How do you pop “The Question”?

A: Everyone is different, that experience is no different than if you’re able bodied.  As a guy in a wheelchair, you don’t get down on one knee but everything else is the same.

In my case, I met my wife Joy while I was on a business trip to Kansas City in 1995. The day I came into The Rehabilitation Center of Kansas City, I met Joy because she worked there as a recreational therapist. I happened to see her working and thought, I need to go talk to her; she’s pretty. And that’s what I did!

We had a whirlwind relationship from the very first day we met. I made a big to-do of our engagement, arranging a special dinner at Cinderella’s castle at Disneyland. I had Cinderella deliver the ring in a glass slipper.

How you propose depends on your personality and what you like. Make it yours and make it unique.

Joy and Bert tackled parenting as a team, and that came in handy because they had twins!

Q: What are some things we should consider when having “the kid talk”?

A: Are you both working? Are you ready for children? Who is going to be the primary caregiver for the kids or are you splitting the duties?  Set all of that up before you decide to have kids.  Talk about the process of having kids before you try. Sometimes things work normal and you’ll be fine.  Sometimes you need alternative medicine like in vitro. Adoption is an option too.  Some of my friends have their own children together and adopted too.  There are so many ways to make a family together, be open to all of your options!

Q: What is parenting like from the perspective of using a wheelchair?

A: Personally, I’m a really involved dad and try to stay busy with the kids a lot and give Joy a lot of breaks.

For example, when my children were just born, I had adaptive changing tables and cribs made for me, so I could reach the babies more easily.  I would roll up under the crib that was raised to be accessible for me – and the side would swing open like a door so I could roll up and slide a kid right off onto my lap. I could roll under the changing table too, and I had the diaper materials ready on each side so I could take of business.

My kids, Will and Emma, see me like any other dad.  Emma recently wrote a paper for a school project where she talks about the way she sees me as a father, and it meant so much to me. She says, “Why walk when you can roll?” Here is her take on having a parent who uses a wheelchair: http://www.uromed.com/blog/2013/02/21/why-walk-when-you-can-roll/

Bert and Joy like taking trips together that allow both of them to enjoy quality time together.

Q: What are some keys to success for a long-lasting marriage?

A: Same as any marriage, the keys to success are the same.  They revolve around talking and communication.  Also, don’t depend on the able-bodied spouse to be your caregiver. You married them to be your spouse. If you want a nurse, go get one.  That keeps them from feeling overburdened.

Keep in mind also that your loved one married someone who uses a wheelchair. They married a person , not a patient. So if it’s something you can do, do it for yourself. It will make your relationship healthier.

In our case, Joy and I focus on work arounds for any can’t-dos with can-dos. I’m lucky in that I can maintain my independence and am able to do almost everything on my own, but there are still things that I sometimes can’t do.

When we go on vacation, for example, walks on the beach and hikes into the mountains are out of the question.  So instead, we go on cruises, hang by the pool, scuba dive and snow ski together.  Our quality time together works out just fine!

Fantastic words of advice for any relationship!

Q: Would you recommend counseling or other support programs for marriages that are having trouble?

A: Yes, absolutely! Before you get married, I strongly recommend pre-marital counseling as a way to get any major issues out on the table beforehand.

If marriage or sexual health counseling is something that might help your current relationship, I’d recommend Dr. Mitch Tepper. He brings a lifetime of first-hand experience with chronic conditions and disability to his work. After growing up with Crohn’s Disease (IBD), Mitch was introduced to disability at age 20 after breaking his neck, causing him to also use a wheelchair.  Dr. Tepper is an American Association of Sexuality Educators, Counselors and Therapists (AASECT) Certified Sexuality Educator and AASECT Certified Sexuality Counselor, and a tireless advocate.  Contact Dr. Tepper at: http://mitchelltepper.com.

More Resources on Marriage
PN Magazine, published by the Paralyzed Veterans of America (PVA), has spotlighted UroMed founder Bert Burns and his family as part of their February 2012 issue. The article shares the story of two relationships that bloomed into successful marriages as a means of inspiration and hope for readers who also use wheelchairs.  Read the article, titled “Love Knows No Bounds” at http://uromed.com/content/PNFeb2012FullStoryV2LOWRES.pdf

About UroMed Catheters
Headquartered in Suwanee, GA [a suburb of Atlanta], UroMed is one of the nation’s leading providers of single-use catheters, urological and disposable medical supplies, including intermittent catheters, closed system catheters, condom catheters, pediatric catheters and continence care products. UroMed is nationally accredited for Medicare reimbursement and most state Medicaid plans, and partners with private health insurance providers and health plans to provide patients with single-use catheters, catheter kits and incontinence products. UroMed also has seven staffed regional offices located in Boston, MA; Columbia, SC; Jacksonville, FL; Dallas, TX; Carlsbad, CA; Knoxville, TN; Richmond, VA; and Baton Rouge, LA; enabling next-day delivery after a customer’s initial medical supply order. For more information, please visit http://www.uromed.com or call 1-800-841-1233.

2 Responses to Navigating Marriage from the Seat of a Chair by Bert Burns

  1. Emily Walsh says:

    Hi there! I just got done checking out your blog and enjoyed my visit. I am involved in the cancer community and had a quick question for you. I was hoping you could email me back when you get the chance. Thanks! – emilywalsh688@gmail(dot)com.

    Emmy

  2. Jeanna McQuay says:

    Being a para and marrying an able bodied man, the marriage lasted 16 years, during which the majority of those I worked full time and delivered 3 children via C-section. It may (or may not) have helped save our marriage had some of these questions been addressed, specifically the last two. Thanks for sharing this information to others.

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