January 30, 2021

Ultimately, severe disability is isolating. You knew that. The books say that. But almost a year into an unprecedented pandemic, I can feel that in a way that I never felt before.

Oh, sure, there are internet communities. If I sound helpless enough – even more than this blog post – in an email to the right group, many will rush to offer ideas or resources.

But life with disability is isolating for Dar and for us. We have neighbors that have an 11-year-old and an 8-year-old. In another world, where Dar was born typical, they all might be friends (including Dar’s brother), with all the growth and relationship-building that could imply. But because Dar is Dar, we’re the weird family on the street. They hear screaming from our house. Maybe they hear or see Dar hit himself. So I’m assuming that they react with an arms-length-ing even though we’ve reached out a few times. It’s not about them. It’s about us.

We can’t do a lot of things that you might think we can. I don’t feel like listing them all today, you’ll just have to take my word. Disability leads to inability. And that inability limits Dar and his brother in ways that are really bothering me lately.

I’ve been having a lot of generational thoughts lately, like I’m Michael Corleone in the last shot of Godfather Part II, looking at Lake Tahoe, presumably thinking about his obligations to the generations before and the generations after. My mom was so vivacious, such a carpe-diem-er, such a deep drinker of the marrow of life. I feel like I’ve narrowed her circles, and that if R has any kids, those kids will live in even narrower circles.

This is not a happy blog space lately. I get that.

Cue the damn Godfather theme and the credits.