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

The Do’s & Don’ts of Dating with a Disability

Bert Burns started LASCI as a motivational speaking program for newly-injured patients with spinal cord injury.

Bert Burns started LASCI as a motivational speaking program for newly-injured patients with spinal cord injury.

Editor’s Note: When Bert was only 20 years old and a college intramural sportsman, he was hit by a drunk driver. The force of the impact threw Bert from the car. He broke his neck at C6 and C7, and learned he would have to face life as a quadriplegic. Bert spent the next six months in rehab, convinced his life was over.

After a successful wheelchair racing career where Bert won a gold medal in the Paralympics, he went on to create UroMed, Inc., a urological supply company that he hoped would make a difference to people with disabilities. He met his wife, Joy, in 1995. “Having Joy and our twins, William and Emma, makes me the luckiest guy in the world,” he says. “I truly have an amazing life.”

Today, Bert devotes considerable time as a motivational speaker for youth with disabilities, rehabilitation programs, medical education seminars and other community events. Bert strives to reach out to others through public speaking because, more than anything, he wants to give other people in wheelchairs the same encouragement that he has received.

Bert says, “I hope to convince patients in wheelchairs that they can still do all the things they want to do and more. They will just have to do them differently.”

Below we share Bert’s thoughts on a topic that everyone thinks about from time to time – the ups and downs of dating with a disability.

Dating 101 for People Who Are Newly Injured – Spinal Cord Injury

Q: Will people still want to date me? Why would they want to?

A: Yes, of course! You are still the same person. Sure you’re rolling now instead of walking, but your personality is what people date – not your legs.  Some people won’t date you because of the chair.  But some people don’t like me because I’m bald. There’s all kinds of reasons that people choose not to date someone, that’s ok.  For every five that won’t date you, there’s 50 others that will.

Don’t worry if you strike out! There’s all kinds of reasons that people choose not to date someone, that’s ok. For every five that won’t date you, there’s 50 others that will.

However, once people see that you’re in a wheelchair, you have to address the point and keep going, so they understand that you’re not just someone in a wheelchair. You’re someone they want to get to know.

For example, everyone has a different personality. I’m a very outgoing person. When I see people, I say from my wheelchair, “Hey, how are you doing?” And they immediately think, “Hey, he can talk, too!” And the next step is that I start talking to them. Then they get their minds off the wheelchair and find out that I’m really a person. Usually within 2 or 3 sentences, they no longer see the wheelchair; they see me. You can do the same thing.

After my own injury, I went through three phases while dating  —

  • Girls I knew before I was injured, whom I had dated or met before.
  • Healthcare professionals who understood spinal cord injuries (SCI), so I didn’t have to explain everything to them.
  • Then, I moved on to the rest of the population.

Bert and his amazing wife, Joy, love to take cruises and visit the beach together – like in this trip to Mexico!

Q: Got any suggestions for a first date?

A: Sure! Go somewhere you’ve been before that you’re already comfortable with, that you know is accessible and where you can get around comfortably.  If you go to the movies, decide whether you want to stay in your chair or transfer into a seat.  At a restaurant, do you want to sit in a booth and transfer or sit at a table and stay in your chair.  Moving out to a patio? Is it too hot for autonomic dysreflexia? [where you can’t sweat]

When I’m with my wife, Joy [who is able-bodied], we plan outings and events around what we can do together, not what we can’t.  When we go on vacation,walks on the beach and hikes into the mountains are out of the question. Instead, we go on cruises, hang by the pool, scuba dive and snow ski together.

Q: When is it appropriate to talk about your disability with your date?

A: I usually talk on the 1st or 2nd date about things I can or can’t do, so it’s not a white elephant in the room. That way your date can decide if that’s a factor or not. If it doesn’t bother them, they don’t move on. If it does, you move on!  Depending on your date and your age, the sex talk comes up pretty early too, usually by the 2nd or 3rd date.  You need to decide whether or not it’s appropriate, depending on your age and relationship level.

In my case, the secret to success for being married has been knowing Joy so well – we both understand each other’s strengths and weaknesses and play to those. So talk often and talk a lot, it’s the key to keeping your relationships healthy. 

Q: How do you have the sex talk without freaking your date out?

A: I would talk about what works, and what doesn’t work, making sure to let them know that now with all the medications on the market, things work a lot better than they used to.  This is important too when it comes to having kids.

A lot of people think they can’t have children after a spinal cord injury. That may have been the case 31 years ago when I was first injured, but it no longer is. Joy and I tried the old-fashioned way first, and that didn’t work. Then we went through artificial insemination — no luck. So then we tried in vitro, and that did. We now have two beautiful children!

Think you can’t have kids if you use a wheelchair? Think again! Bert’s kids, Will and Emma, will be the first to tell you that’s not true.

Make sure though, that when you do cross over into a more intimate relationship with someone special in your life, that you plan ahead before spending the night together.  If you know you’re going to be at someone else’s house, take care of your bowel program ahead of time, just like you would if you were taking a long trip.  If you wear a leg bag, change it before you go out.  If you’re going to be spending the night somewhere, make sure you bring a bed bag to switch out from your leg bag, if you use one.

It’s appropriate and probably wise to talk about your bowel and bladder program with your significant other when your relationship reaches the point of becoming initimate.  Hiding things in this area will only surprise both of you later, at what will probably be the wrong time rather than the right one.

Q: Any final thoughts?

A: Yes, if you are an individual who has just become disabled, please don’t give up on trying to do things you may not be able to do today. It may not work today, or tomorrow, but you’ll adapt and find a way to make it happen even if it’s a month from now.  You have two choices to make. If you go home and say “Life sucks,” it will. Or you can go home and say, “These are the cards I was dealt, and I’m going to make the most of them.” If that’s the choice you make, you’ll be OK.

Stay Tuned for Part Two: The Joys Of Marriage

If there is one thing that Bert Burns knows about, it’s possibilities. He has discovered that no matter how grave the situation, no matter how discouraging, there are always possibilities for good and for growth.

Stay tuned for parts 2 & 3 of this series! Next week, Bert will be talking about the Joys of Marriage, followed by Living Happily Ever After and What About Divorce?

If you’d like to learn more about dating with disabilities, please see the following article published in PN Magazine.  “Love Knows No Boundsfeatures the relationship stories of three couples, including Bert and Joy Burns. Visit http://uromed.com/content/PNFeb2012FullStoryV2LOWRES.pdf