1. Spiritual disability: yes, some people think this is a real thing and worse yet have told mommy Shana she has it. I suppose that means I do to, but I prefer the term “spiritually dead” as it implies no heroic efforts will be made to save me. Again, in some fields this is considered a real! thing! Is this what progress looks like? Cut to me sitting in a corner lamenting the demise of knowledge, intellectual progress and the commodification of the term "disability".
2. The Olympics: Yay! I like me some awesome global sports coverage that highlights interesting types of competitive sports and tell the stories behind the women and men who have devoted their lives to them. However, the disability discourse created in this environment is just…yuck. We like to call it inspiration porn
(http://buildingradicalaccessiblecommunities.blogspot.com/2012/02/inspiration-porn.html ). It is so exhausting to unpack how problematic this is with all those well-meaning folks out there that just love to use a little girl in leg braces running as some agent-less source of inspiration for them to feel good about themselves. Again cut to me sitting in the corner trying to imagine Greta being a source of inspiration for people and resisting the urge to make her wear a t-shirt in public that says “I am NOT your inspiration porn” (and no, I would never do that, what kind of parent do you think I am…okay don’t answer that).
3. The medical system: is there a reason we cannot find a competent doctor in this foreign land? Our newest orthopedist, upon being asked by me how long the effects of Greta’s tendon lengthening could be expected to last said…wait for it… “forever”. Um…isn’t there some kind of CP 101 that would make you eligible to speak to patients/parents? Cut to me clutching Greta and backing slowly out of the room only to find that all pediatric orthopedists are now gone from the this “world renowned” medical center. So I guess it is only geriatric surgeons who don’t have the slightest grasp on stroke or brain function and have been fixing broken legs for the past century for us. And this is with the good insurance!!!
4. The school system: Greta and Gus got to take part in a preschool for a staggering four weeks this summer (Mondays and Tuesdays only, from 8:30-11:30). Fine, wonderful! The fact we were informed about it the night before via email…hey, whatever it is summer we can go with the flow. The fact that we have been told nothing about fall and have the sinking suspicion another late night email with the details is headed our way late August is annoying. But the worst part is not knowing what Greta will receive is not being able to adjust other aspects of our life to pick up the clear slack this preschool program creates. Cut to me trying to find private physical/occupational/speech therapists and being told none have experience with “kids like that” upon which I slammed my phone down three times and sent myself to a timeout conveniently located next to the coffee maker.
5. Blogging: why won’t Blogger let me upload adorable pics of the kids? Who knows, they may be working in collusion with the hiring department of aforementioned medical center, or um, it could be user error? Either way I’m pretty sure this blog’s readers aren’t here for my whining they want cute pictures and I need to deliver!
Okay, I enough complaints for one post. In other news, the kids are awesome. Jack is lean mean tan swimming machine after summer camp, Greta and Gus are potty trained (owed mostly to the efforts of mommy Shana) and we have had some seriously fun times this summer (the kids got pooped on by an owl, hilarity ensued). So next week I promise something more cheerful, don’t give up on me yet!