A few weeks ago, I was bouncing around the internet, avoiding annoying memes and scanning through articles about disability and I came across an article that I cannot find right now, but it was about a therapist who was trying to teach empathy to non-disabled people by limiting their movement and making them walk, limp or roll for a day in a disabled persons shoes. This article, obviously has stuck with me and made the tiny little gears in my brain to spin and go into overdrive, it made me think about a day in Devlin’s shoes, what it would be like.
Imagine a day where you are unable to do more than roll around, lift your head and fling your arms about in an uncontrolled manner, sometimes you have the dexterity to actually control your arm movement, mostly to reach down and yank your diaper off. You don’t have the ability to communicate verbally, unless it’s a yell, a laugh, a scream or making noises that really have no meaning but your Mom has decided that they have meaning, and she may be wrong, she may be right. She doesn’t know because you don’t have a way of saying ‘Yeah Mom, that’s totally what I meant!’
So you wake up and you can’t just get out of bed because there is a safety gate that your Dad built on your bed to keep you safe and prevent you from rolling out of that bed. The only way you can get out of bed is to call out and get someone to come and get you, which might mean you have to really scream and yell because at the moment they are engaged in something or can’t hear your sweet little babbling.
You have to use a diaper because like the rest of the muscles in your body you don’t have control of the muscles that prevent you from being incontinent. So you need someone to change your diaper, and to be honest, first thing in the morning people are not always the most pleasant or excited about changing a fecal filled diaper before they’ve even fully opened their eyes, let alone had their first sip of tea.
Getting fed is again a crap shoot. You may get what you want, you may not. Mom tries to figure out what you want, and she tries to give you all the options you can, but again it all boils down to limited verbal ability to communicate.
Then getting dressed is again a moment of someone else figuring out what you want to wear and then putting it on you.
A day in Devlin’s life can be summed up by simply saying that self expression is non-existent, you don’t have a choice on almost everything. You need someone to do the most basic of actions for you and privacy is a thing of myth.
All in all I would think that this would be so frustrating and rage inducing, but instead my little guy is a bundle of smiles most of the time.
Don’t get me wrong, he has a temper and there are a few times each day when it comes out and he makes life pretty loud and unbearable for the rest of us. But we all have those moments, and for us we ususally tell who ever it is that’s pissing us off what they’ve done and then we get over it. Dev on the other hand can’t do that, so he lets us all know he’s pissed. And honestly, I think he’s entitled to a bit of anger every now and then.
But I don’t think about those moments. I think about and try to remember the moments when his brilliant smile and contagious laughter dominate the landscape of my life.