Showing | Seeing | Knowing

RA Guy Adventures of RA Guy

In less then 48 hours, I’ll be traveling back to my home country of the U.S. for an extended three month vacation.

I’ve been residing in South America for almost a decade now…and while I initially used to go to the states at least twice a year, it has now been a little over three years since my last visit…which means that I’m in for a bigger case of reverse-culture shock than I usually experience. (When you live in a place that is *completely* different from where you came, I think that it’s somewhat inevitable to have such feelings.)

Ranging from the obvious:

Do people really need to use their smartphones so much, or why does “new and improved” at the grocery store usually mean smaller? (If I’m feeling particularly courageous, I might even turn the package sideways and take a look at its ingredients list. Eek! My nephew once commented how he loved the chocolate milk that is sold at my local market because it had only three ingredients: milk, chocolate, and sugar.)

To the more subtle:

Every now and then, when I’m walking around a store in the U.S., I’ll hear a parent urgently telling their child (in what is supposed to be a muted whisper, but which usually ends up being louder than a yell) to STOP STARING. I always feel bad in such cases…not necessarily for myself, but for the little kid. I mean, I personally feel that my forearm crutches are quite cool…and to see a six-foot guy walking around with them is something that is going to attract the visual attention of little children. (Imagine how much attention I’d get if I started walking around with a cape!)

And a part of me, even though I understand that many of these parents base their words and actions on an idea of “politeness,” can’t help but think that the primary message that is being instilled in some of these children is one of “don’t look.”

For my graduate thesis at Harvard, I designed a museum for prosthetic devices. At that time, disability had not yet entered into my life, but there was a part of my who wanted to explore an architectural design that was based upon real accessibility, and not just having to comply with a checklist of requirements. There was also a part of me that saw not just modern, but also historical, prosthetic devices as something that were absolutely beautiful; things that were mean to be looked at, and not hidden. (And for the purposes of my project, I included artificial limbs, crutches, eyeglasses, hearing aids, and wheelchairs in my definition of prosthetic device.)

Apparently, though, not everyone agreed with my premise…including the architects who had been invited to review my final presentation. I still remember being told that what I was doing was “cynical,” that I was showing things that were supposed to be hidden. I still remember being so shocked by these comments, that I couldn’t even respond. I still remember feeling absolutely hurt, and taking it somewhat personally.

When disability permanently entered into my life less than a decade later, I often thought back to this moment, to my thesis project, and chuckled. Now I’m not going to say that it’s easy to incorporate a cane or a pair of crutches into one’s personal identity…but when it became absolutely necessary for me to do so, I told myself that I was *always* going to be proud of my crutches and of my canes. I would not allow them to get anywhere close to being marks of shame.

I know that “showing” a disability might not be for everyone, but for me personally, doing so makes a lost of sense. Maybe this is one of the reasons what I created the Show Us Your Hands! community collage project a few months ago, this belief that we should be proud of our hands and that we should show them to the world, no matter what they look like.

Because once we show, more people start to see. And the more people start to see, the more that begin to know.

My bags are packed, and I plan to rest as much as possible over the next two days before I take off on my 20+ hour trip. I’m a little nervous, no so much about the actual trip (which is going to be a challenge, but I just continue to remind myself that everything is going to be okay), but more so about that fact that my physical condition has changed drastically since I last saw many of the friends and family members who I will be visiting during this upcoming trip.

I can no longer hide what is happening to my body; I have to show what is going on. My friends and family will see…and together, we will all know, and we will all continue to hope that there comes a day in the future when those of us who live with these diseases no longer have to experience so much pain and so much disability.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!