Barton and Megan break down social misconceptions.
This week I had a conversation with a friend, but I was struck by misconceptions that hit to the core. As both Barton & I are in the midst of job transitions, this summer we are cutting back, everything that we can. At the moment we cut out morning help, something that we don’t normally like doing because it shifts our roles. But because of how expensive it is, we had to cut back. My friend responded by talking about how she understood, she took care of her family, and it’s like taking care of a baby, but a big baby. What? Are you serious? Really?
This comment floored me- absolutely floored me. Now my response was quite defensive, and if I had been paying attention I would have pointed out how sad it was that she was not able to see beyond the actual issue. Of course, instead I went on to defending my husband.
Yes, as we grow older, we lose our memories, our capacity to take care of ourselves, to be independent. Many of us take care of parents and grandparents as they grow older or transition into a state that is more child like. But this misconception hit to the core that Barton was a big baby because he had a disability and needed additional help.
Barton is an independent man, husband, coach, teacher, poet. His heart and service is invaluable and he has worked his butt off to get where he is. He doesn’t like relying on others, not even me, and works hard to be as independent as possible. He provides an example for others to open the space for them to see that they too can live fulfilling, independent lives.
Looking at those with disabilities as being babies is dehumanizing, demoralizing and strips them of any value or worth. It’s easier to think those with disabilities have no value in the community whatsoever where we could put someone in an institution or dismiss them altogether.
Often people tell me that I am so good to have married Barton, as if Barton had no say. Do they not know that he was the one to asked me to marry him? I am so privileged that he chose me, especially since it’s common that women swoon over his bright blue eyes and smile.
Would she have believed me if I had talked about how much Barton does to take care of me? I doubt it. Many people don’t see the ways in which Barton takes care of his family, work, service. They only see what they want to see, and often times, miss the heart that is right in front of them.
Later when I talked about adoption & fundraising we were doing for accessible equipment, she quickly assumed we would be adopting a special needs child because I was talking about accessible equipment. Her shock that Barton could take care of a child was clear. Again, the misconception that Barton could never be a father or take care of a child even though he’s in a wheelchair or has a developmental disability.
So much work is being done to negate these misconceptions, and just in the time Barton and I have been together, we constantly push beyond the barrier that people place around him, around us together as a married couple.
Yes, right now it is tough- it is tough for everyone hit by the economic turbulence. And we aren’t immune to that. But it does not mean that we can dismiss those with disabilities or devalue their contribution to our community.
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I really feel you here. My husband has a disability. He is a paraplegic and uses a wheelchair. I do not have a disability. We have been married for almost a year now and I feel like the luckiest woman on earth to be his wife. His disability will always be a part of our lives, but it by no means consumes it. Even though I see the chair everyday, I find myself forgetting that he is disabled. Before our wedding, there were people….family members of mine that tried telling me that I was making a mistake! They would look at me like my life was over. They couldn’t even hide the expressions on their faces. They made comments on how I “did his parents a favor” by marrying him. It was so rediculous and closed-minded and it really hurt me. One of my aunts actually emailed me telling me that “all people in wheelchairs are controlling and that he would isolate me from my family and friends”! He asked me to marry him! And I totally understand your feeling on the “big baby” comment. I will always help my husband with whatever he needs and I do take care of him, but he also equally takes care of me. We are married. We are supposed to take care of each other. In the past year we have done so much together. We ride our ATV together and we just bought a jetski and have been taking it out every weekend. Together we always find a way to make things work and honestly, we have not come accross one thing that we could not do. All with proper planning of course! This Sunday if the weather holds out, we will be going on our first hot air balloon ride. Anyway, I have learned to not let other people’s ignorance bother me. We live our lives just as everyone else does. And when I think of my husband, I think of a smart, whitty, handsome, passionate, hard-working, and loving man. The chair is just something he uses, it is not who he is.