In 2014 there was a heated online discussion about whether the following picture was appropriate. In this photo we see James Lee carrying his sixteen year old son, who lives with severe disabilities, to the shower. The image was part of a series authored by NPR exploring the demanding lives of caregivers.
There was considerable response to the photo, including more negative responses than were expected. So NPR published a follow-up discussion you can read via the link posted here.
I remember being generally indifferent about the picture. This image is lived out in my home every day. Heck, we talk about poop at the dinner table. This morning’s breakfast conversation discussed the timing of enemas.
I did, briefly, wonder if the picture was disrespectful to the Lee’s son who cannot consent to images that might be posted publicly. But, as an extreme caregiver trying to illuminate the hidden and unspoken world of caring I believe that images like these go a long way in communicating the fact that the caregiving many parents offer is unsustainable. Sadly, answers to caregiving crises are complex and expensive, so the crisis largely remains. In short, I felt the benefits of sharing the image overshadowed any downsides.
I remembered this picture and the divisive discussion today as I posted this picture of diaper clad Matthew on my Facebook page.
During his morning care our puppy, Archie, joined him in bed and came to rest on top of Matthew. I thought it was adorable and snapped a picture which I then shared with my greater Facebook community. The response was universally positive.
But yet I am aware that many people who live with disabilities might take exception with this photo being published online. Their comments would, perhaps appropriately, point out that Matthew could not consent to his image in a diaper being posted. They might suggest that I was being disrespectful sharing such an intimate moment They might, rightly, worry about this image perpetuating negative stereotypes about people with disabilities as drooling, diaper clad individuals.
But there’s part of the “catch”. My son drools. My son wears a brief (or diaper). It is who he is and for him, and us, it is normal and I see nothing shameful about either. Rather than hiding him away from eyes that might be offended by such images I want the world to become comfortable with different ways of being. I also want the world to begin to understand the extreme level of care that many caregivers are providing behind closed doors. Until that care becomes more visible the caregiving crisis recently discussed in the Ontario Ombudsmen report exploring care for adults with developmental disabilities will remain acute.
My son’s image is not immodest. He is wearing far more than many posters on Facebook. For Matthew, a brief is both normal and necessary, and this image is pretty darn cute. To those who take offence I would suggest you get over it!