What was it like growing up as a child with diabetes? Did you feel "different" from other children? Did you ever face ridicule or discrimination because of this "difference"?
I was only six when I contracted diabetes, so I didn’t really know any other way to live. I never really felt different or special. This was in large part due to my parents and the way they treated me. The only discrimination I experience was not being allowed to spend the night with certain friends or go on over-night trips. Some parents were fearful of my medical condition and did not want to be responsible should anything go wrong. My mom took it much harder than I did. Because my “disability” was not visible, I got off easy.
In being married for several years to a man with physical challenges, what have you learned about our country's response to people with physical disabilities and their families? Did you two ever face discrimination or mistreatment?
Let me be completely honest about falling in love with my husband. Before I “let go,” I came to a cross-roads. I was intrigued by this hilariously witty guy who just happened to look like a cross between Kermit the Frog, Gonzo, and Mr. Burns. His looks were an issue. They were. Did I let go of my childhood dreams of “Prince Charming” and embrace this froggy-looking fellow? Know this…it was the BEST decision of my life…to listen to my heart. Wisdom spoke to my soul, “Jan, in life we all grow weak. As we age, we will all become disabled to one degree or another. So you’d better make real sure that the man you choose to grow disabled with is a gifted conversationalist….” And with that, any hesitancy concerning his disability….his deformity vanished and he simply became Chuck, the man I adored…the man I longed for.
Now being married to a man who was clearly physically disabled was quite the adventure. While it came with parking perks, it also came with challenges. First, let me say that kids were the best. They were curious about Chuck…curious about his wheel chair…about his crooked body…and would walk right up to him and ask him about these things. He loved it. Three-year-olds were the best…with their earnest, quizzical expressions…trying to place Chuck into the appropriate category. They also wanted to touch…touch his chair…touch his back. Another fun faction was the stroller group. You could see the wheels turning in their minds…”Wow, so he’s got one, too. His is really cool. Hope I get to have one like his when I’m older….”
Now adults were a different matter altogether. It was the avoidance of the eyes that was most noticeable and most hurtful…the “look away” thing people do. They would notice him and then quickly find somewhere else to look or something else to distract them. And like my mom experienced with me, it was probably harder on me that it was on Chuck. I wanted to yell…LOOK AT HIM YOU FOOLS.
Often when Chuck and I would go out to eat dinner, the host or hostess would look over Chuck’s head and speak to me. I learned to quietly look away when “we” were addressed and let Chuck speak for us. It was subtle, but effective. Of course, once someone engaged Chuck, they were captivated. He was something else.
There were often assumptions…that Chuck and I were brother and sister because no way could he have a wife….
The only out-and-out discrimination we experienced happened in New York City. Go figure. Chuck and I were denied service at a restaurant in China town. The host took one look at Chuck and said, “No. Please go.” What ya gonna do?
On a separate visit to New York City, we experienced some pretty big physical obstacles involving the subway system. We were there with another “wheelchair couple.” Upon buying our tokens, we realized there was no way to get the chairs through the turnstiles. We kept motioning to the guy in the booth to help…to let the guys through, but he ignored us. Eventually several on-lookers picked up the guys’ chairs and lifted them over the turnstiles. That was obstacle one. The second was finding an elevator at our stop. Having searched the entire area, we found a custodian and asked, “How do we get the chairs up?” He said, “You don’t.” He told us which stops had elevators and we jumped back on the subway…rode to the next closest stop with an elevator…then walked several blocks back to where we wanted to be. This was back in the late 1990s. Certainly New York’s subway system has improved!
One time Chuck spoke to a group of teens concerning how to “treat” people with physical disabilities. I found this comment most interesting: “People in chairs are pretty much like everyone else. They have good days and bad days…so don’t be surprised if they don’t fall all over themselves with appreciation just because you are kind to them. Some people in chairs are jerks. Some are cool. The chair has very little to do with what kind of person they are.”
I know you learned a lot from Chuck about the human spirit and human strength. Care to explain what most touched you about him in this way?
What touched me most about Chuck was that he lived as if he did not realize there was anything unusual about him. He was “entitled” to what every man is entitled to…a good job, good friends, a beautiful, loving wife…. He didn’t realize what a hero he was. He didn’t take note of the courage it took to daily face discrimination…to walk about with the audacity to be deformed in a world obsessed with physical perfection and physical prowess.
One time, out of the corner of my eye, I caught sight of us in a window. It was a bit of a shock. I thought, “We look really bizarre.” When he stood, he was four foot seven…all arms and legs with a short, twisty torso accompanied by a hump on his back. To me, he was an Adonis…but catching a glimpse of what others must see was startling…and humbling.
Do you have any advice for other couples who have had to suffer because of medical conditions?
My advice to couples who face life with medical issues is the same as for any other couple. Love one another with your actions and your words. Commit to loving each other…not to being in love with each other.
I always took comfort that the main issue in our marriage was physical. If your spouse has to have a "defect"...and all spouses have to have at least one...I'd take physical defect over character defect any day!
|
