The Way of the Wheelie (Physio Therapy After 18 for People with Physical Disabilities)

There’s many gaps in services everywhere in the Service Industry, but this blog isn’t about everywhere, it’s about wheelies. A glaring gap in services for people with physical disabilities is the way therapy ends abruptly after the individual turns 18. This means that after this kid has spent his or her whole life bucking-up-buttercup and listening to people tell them to “stop fooling around and do your exercises,” They are just set free. Like that, they enter late adolescence, with a high school diploma (maybe), and permission to be lazy for the rest of their days. It’s just so…sudden. In case you’re curious, here’s a chart depicting physio throughout a wheelie’s life:

Age Phase Result
2-10 yrs “Physio is fun. If you have a good attitude about it, we’ll play Barbies/eat icecream/watch Magic School Bus afterwards.” My mom, everyday. Woohoo! Physio is my ticket to fun. I’ll practice sitting up if you throw watching Big Comfy Couch into the mix.
11-15 So, physio is actually a bit pointless. I mean, I try really hard and my butt still sticks out. And I still can’t walk. God, this is dumb. My parents tricked me. Fine, I’m here, but I hate this and I hate you and I’ll be less grumpy about this if it means missing math class. Then I’ll do as many gimpy squats as you like.
16-18 Maybe this means I can actually have abs. Worth a shot, right? Wait, you mean Range of Motion exercises aren’t for abs, they’re to keep me limber? Hmmmmm.
18-forever Woah, I’m free, I never have to pretend i’m riding an imaginary bike ever again. Why am I so out of breath? Why am I so sleepy? How come I feel 45?

I can see how you might think I’m exaggerating in terms of being “cut off” regarding physio after 18–I mean, it seems nonsensical, right? It’s not like i was cured from eating wheaties, or finally figured out how to clone my physio therapist, I simply just grew up.

And for a year or so, laziness was a great freedom I felt I’d earned through enduring years of boring stretches and embarrassing exposures of my physical limitations. I was content to sit, perfectly still, with no physio examining my muscle contractures or asking me to fight through my spasms. I didn’t have to try and “sit up straight” while my asshole therapist pushed me over ever so slightly. There were no floor mats for me to get stuck in mid-log roll. No cold, plastic “therapy balls” for me to fall off of ever-so-uncoordinatedly. It seemed heavenly, until I realized I wanted to make the most of my self while i was still young.

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These therapy balls are part of a balanced family.

 

Getting on-track to my “physical best” was easier said than done. At 21, I didn’t have a family doctor to refer me to a physio, so I went to the campus doctor and they told me that’d i’d have to have some injury or other “fixable in 6 visits” muscle ailment.  It was a dead-end, CP can hardly be improved, never mind fixed in 6 sessions.

Across the hall from the physio therapists who never really help anyone was the gym. Through the glass windows, I saw a pack of buff turds with iPods and tight v-necks and watched them bounce around on the ellipticals, swinging their butts up stairs made of air. I wanted that.

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Soon after that, I found someone who called themselves a personal trainer. I told her about my disability, and she agreed to assess what i could do at the gym, and train me from there. She had slick, spikey grey hair and seemed to have a general desire to help. But for all her want, we just couldn’t find any machines that i could access independently.

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I never did find a gym or exercise routine (anti-climatic stories are all the rage) that offered me the same healthy challenge as all my physio in my formative years. As of now, I swim when i can, but I hope that I can work out something more concrete in the future, though I’m not sure anything of that nature exists.

Things that Might Soften The Blow:

In a world where wheelies are more than society’s representation of inevitable tragedy and illness, a few solutions might be offered:

1. Adult Physio Groups: In Kristen’s perfect lil wheelie utopia, this looks like a group of 8-10 wheelies interested in physio, with two physio therapist facilitators that lead the group. Group members could create individual and collaborate goals, steps to achieving those goals, and perhaps discuss issues, barriers, and personal struggles with exercises.

Online Accountability Groups. The two major advantages of the internet are anonymity (even if it’s an illusion), and accessibility. This might mean that people have the confidence to express concerns and are given equal chance to participate, even if their physical challenges prevent them from leaving their house.

Suggestions on what else can be done? I love them. Email me.

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#CP Problems

The other day in class, we did this exercise that was meant to make students understand privilege.It was really revealing and touching and all that jazz, but there were about 29 race/gender/socioeconomic questions and one disability-related question. It was then that I realized most walkies wouldn’t be inclined to think about what it actually means to be disabled. Why would they, their bodies work .

So,  in case you’re a walkie who wants the ins and outs of wheelieness beyond “can’t go inside that building,” here ya go. Note that I have spoken exclusively to Cerebral Palsy, because, well, that brain damage confusion is what I understand most. Shout out to my CP ppl who can relate to this stuff.

  1. Not moving your arms while trying to move your feet.
  2. Eating soup. So tough to get noodles and broth in the same bite without spilling it everywhere.
  3. Going to scary movies and having the person you went with look at you the same way after.
  4. Unforseeable slants in the terrain. Not because your beastly wheelchair can’t handle it, but because it  damn well throws your equilibrium for a loop  and makes you full-on spaz out. And then explaining that to some able-bodies or MD or para/quad person. Good luck.
  5. Never knowing where you are in proximity to space, people, and life. Ok, this one only applies to me.
  6. Eating around people that are pretty much comedians. I’ve ended friendships over this. “I’m sorry, the amount of clothes I’ve ruined from laughing with you just isn’t worth it for me.”
  7. Telling people you have CP, which is brain damage, and then enduring, “You seem so smart though.”
  8. Being around technology and liquid simultaneously. I’ve broken up with 3 (four??) Macs and one kobo over this. Don’t worry, I’ve moved on to others #thankssexyAppleNerds.
  9. Giving blood/needles. I’m too small to give blood anyway (hidden brag), but man, surgery prep is a bitch: Poke, spaz. poke poke, spaz spaz. spaz, poke. “Please hold still.” THATS LIKE TELLING A BABY NOT TO CRY.
  10. Sex. Dead starfish. Sorry mom. Ok, this one only applies to me too.
  11. TImagehis: Pillow intercepts otherwise perfect pivot transfer, and throws balance entirely off for reasons you don’t even understand.
  12. Toe curl/spaz thing. This is when your toes curl, which they do even when you talk, so hard that your other toes suffocate/jab the little toes on the inside. The pain then causes you to spaz more and the jabs get deeper, in a cycle until you can somehow force yourself to relax. Totally stupid. Happens at least once a week (to me anyway).
  13. Multitasking. But I’d struggle with that even if I hadn’t had a bunch of little baby strokes.
  14. Laughing like you can’t breath 10 minutes after the joke ends. And not knowing why.
  15. Getting too excited over nothing.
  16. Having people say, “Pardon?” all the time because you jumble all your words together worse than twitter when you’re excited, sad, crying, angry, feeling anything.

CP kids are super good at the robot though.