Conundrums Concerning Parenting a Disabled Adult Son

taken off facebook

Bobby will be 24 this year, so this photo and quote resonate with me on a visceral level.

I've just spent the last five weeks teaching freshman comp 1, for which I use disability as a theme. One of the topics we covered was inspiration porn, a construct that I continue to explore personally. When does a photo/meme slip from being an individual's way of expressing himself into being inspiration porn? When are motivational speakers, like Aimee Mullins, crossing the line from sharing insights they've learned about life and living fully to being the objects of inspiration porn as well as the facilitators of it?

I don't know. It's a murky gray area. If I think Aimee Mullins has done some extraordinary things and is an impressive person, am I guilty of using her as an object, of reducing her to inspiration porn? I don't think so, but if photos of her were passed around without identifying her, with someone else's words on it, and the goal of those words was to inspire able-bodied people, that's clearly inspiration porn. So some cases appear to be clear-cut.

What's not clear-cut is whether people who share these images are intentionally objectifying the disabled. I think best intentions should be assumed and then carefully raising the issue of how disabled individuals might feel about images of them being used to inspire able-bodied people to get off their asses is a possible educational tool to use. No judgment, just a "hey, have you considered?"

That brings me back, though, to the image at the top of the post and my concerns about raising my son. Am I still raising him? He's 23. I wouldn't still be raising an able-bodied, non-disabled 23 year old. Am I affording him the right to make his own decisions, to make his own mistakes, choose? 

Do I treat him like a child? Infantilize him? Deny him a chance to create his own future? All of these questions keep me up at night, tear my stomach up. Parenting a 23 year old with multiple issues including intellectual disability is a very ethically and morally challenging responsibility and the questions grow more complicated and the answers more nebulous and dissatisfying the longer we are on this journey.

I love Bobby so much that it often feels like a jagged knife cutting into my heart. I want to honor and respect him, who he is, where he is, and provide him with as much opportunity to control his life as possible, but practically, this is difficult as he requires continual reminders and redirection in order to accomplish basic tasks. He doesn't bathe without being told. He doesn't get dressed without getting told...he doesn't do most things without direction. We've tried writing it down. We've tried visual schedules. We've tried alarms and reminders on his iphone. 

Respecting his autonomy while helping him navigate daily demands is complicated. Maybe more for me than for him; each task requires multiple reminders. 

So, treating my son with respect for his adulthood while managing his need for assistance means I frequently feel like I'm walking a tightrope, and I am none-too-coordinated.

It weighs on me...this sense that I fail him at times, when I fail to foresee how he will interpret a reminder, a request, a suggestion, and it leads to frustration for both of us.

It weighs on me and is a deep source of sadness, this tightrope walking. I know it's my issue to resolve, and so I will keep working to be the best ally I can for my son, while I continue to help him build skills to advocate for himself, while I remind myself that he is a grown man and deserves the right to decide for himself what his life works like on the grand scale, as well as on the smaller scale of daily living.

He deserves no less than my best.

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