by Dr. Ryan Russell
About the author:
Dr. Ryan Russell is 39 years old with Duchenne Muscular Dystrophy. He has a PhD in Psychology, is a life coach, a consultant and a speaker. Thank you, Dr. Russell, for taking the time to share your valuable expertise and insights with us.
When was the last time someone passing by brushed your arm or touched your shoulder? Remember the last time you were able to give someone a real high five with an audible noise? If you can’t recall, it’s possible you don’t have DMD… or you haven’t left your house since Covid started.
Touch is something humans quickly take for granted; it is a form of nonverbal communication. If you observe people and even think about your interactions, you will see many touches exchanged. Someone with Duchenne Muscular Dystrophy – or anyone who uses a wheelchair – misses touch.
Worth the Awkwardness
There are multiple reasons why touching stops.
First, there is a wheelchair or medical apparatus in the way. Second, a person interacting with you cannot touch you without conscious effort. Third, no one wants to be the person who breaks you or fears they might hug you too tight and make you uncomfortable, break your wheelchair, break your bones, run over themselves, knock you out of position, etc.
I was in Walmart once when I saw a teacher from 6th grade that I hadn’t seen in years. She hugged me and accidentally turned my chair off. But the human contact was worth the awkwardness of asking her to turn my chair back on.
It is very likely that at some point, you miss it, but you can’t just expect people to know they won’t break you. If you want a hug or to shake someone’s hand for real, you have to ask or say “I’m ok with (fill-in-the-blank)” then explain how is best. But most people don’t plan to give that much time.
One of the hardest parts of being a wheelchair user is that you have to ask for things or give verbal agreement to things your human brain is not programmed to ask for. For most of my adult life, I lived at home. Until I was almost 30, my mother was my primary caregiver. My father would help, but he didn’t do as much she did. For the most part, she was the only person I received human touch from.
Before my mom passed away and after she was no longer my caregiver, there were many times I just had to ask her to hug me. I get human touch more than I used to now and I don’t have to express the need for it anymore, but many individuals with disabilities still need more human touch. For family, friends, caregivers, etc., please be receptive and please don’t be afraid to ask if you can hug someone with DMD.
It is also important to note that all people and disabilities are different. A simple unwarranted touch could be painful to some people, so please protect your loved one from unwarranted hugs.
As I write this article, it feels strange talking about being touched or asking someone to touch me because it sounds sexual. It’s awkward because asking for a hug seems odd, and you don’t want to be the creepy guy in the wheelchair asking people to touch him. It wouldn’t go over well.
I mentioned how asking for touch sounds sexual, but let’s discuss the awkwardness and confusion your body may experience. We will talk about anatomy as tastefully as possible to keep it rated G. As you may or may not know, the male anatomy has some physical reactions and responses we have no control over.
During the time of my life where I had only my mother as a caregiver – and very little human interaction – an innocent touch or the rare hug by someone else could cause a reaction. For those reading this – whether you have DMD or your a loved one/friend of someone with DMD – don’t be embarrassed by what reactions occur.
A Whole Person
Jerry Lewis, the long-time advocate for muscular dystrophy, once said people with MD are sometimes treated as – or feel like – half a person. Things have gotten better since this statement and I believe the only limiting factor we face is disability-related.
Touch is one of the aspects of humanity most of us take for granted, so pat the arm, tap the shoulder and hug the person in your life that may not get as much human contact as most.
It’ll truly help them to feel more like a whole person.