Cerebral Palsy Is.....

In the style of Being Autistic Is... and What Epilepsy Is...

Cerebral palsy isn't just "bum legs".

CP is being accused of "always being tired".

CP is consciously coordinating your muscles for every little task.

CP is falling over, and then having people step on you (literally and figuratively).

CP is being asked intrusive questions about your mobility aids.

CP is being accused of being lazy when you're too exhausted to move.

CP is feeling like you're being judged when you cancel plans because you're too exhausted to move or you know you will be after the event.

CP is constantly being in pain or discomfort.

CP is being terrified to go out in bad weather, because one gust of wind can blow you over.

CP is going the back way in life (literally and figuratively) because it's the only way that's accessible.

CP is feeling like you're a zoo exhibit everywhere you go.

CP is crying over at least one assignment every semester, because your spazzy hands screw up the assignment, it looks like a five year old did it, and everyone else is whispering about how easy it was.

CP is being told "Oh, I'm not looking for fine art!" when you tell someone you cannot draw.

CP is other people making assumptions about what you can and can't do.

CP is people assuming that physical disability is cancelled out by intelligence.

CP is being accused of "faking it".

CP is other people scrutinizing your abilities, when really they vary from day to day and situation to situation.

CP is everyone separating everything into "can" and "can't" with no gray area in between.

CP is always feeling like you're in the way and asking for too much.

CP is being the only person in the room with a mobility aid.

Feel free to add more! :)

Read More

Woah, wait, another blog?!

I have now created my THIRD blog, a Tumblr called Flutterfly Invasion.  Again, I will still be posting on Butterfly Dreams and Palsy Snark, but the Tumblr will be used more for bits and pieces, odds and ends, as well as things that DON'T directly relate to disability, although there will be some of that, too.   So check it out and have fun!  The June DBC will be up soon.  I promise :)

Read More

The Carnival is Coming! The Carnival is Coming!

OK, so I'm hosting the June Disability Blog Carnival, as you may know already.  And the theme is community.  I WOULD REALLY LIKE SUBMISSIONS BY THE 25TH, BUT I WILL EXTEND THE DUE DATE IF NECESSARY.  So far only one person has submitted a post.  So.....get writing!  Please?

Read More

Redefining Inclusion

I think we need to redefine inclusion.

Many people seem to have this inaccurate, and frankly, kind of bizarre, notion of what inclusion actually is.  Case in point:  this wonderful post about an ignorant teacher from Robert Rummel-Hudson, whose daughter, Schuyler, has a rare disability called Bilateral Perisylvian Polymicrogyria.

"...it was as if the concept of inclusion meant that Schuyler had a right to be parked in her class and to watch the other students, the REAL students, learn. Inclusion appeared to mean being a face in the class photo."

As a physically disabled student in high school, I faced this attitude on a regular basis.  I frequently sat in the classroom feeling like an island as other students swarmed around me doing one project or another that was inaccessible to me.  I had very few social interactions - no one ever asked me to join their group, and even when groups were assigned, the projects were usually motor-skill oriented, such as a poster.  Once again, I'd be the island, sitting feeling lonely while everyone else was having fun.  No one - teachers or students - ever asked me how the classroom environment could be more accessible to me.   No one ever asked what my needs were and tried to meet them.  No one knew what to do with me, so instead of asking, they simply did nothing.  And yet, I'm sure if you asked any one of the administrators at my school, they would tell you that I was fully included for all six years I was at that school.  I blame it on ignorance and lack of training.

Inclusion isn't about parking a kid with a disability in a classroom with no support whatsoever, and expecting them to succeed; or worse, expecting nothing from them so the kid becomes some sort of human wall decoration.  It's about making the classroom environment accessible to everyone.  It's about making sure that every kid who's in that classroom can and will learn, even if it's only one thing.  It's about helping every child, regardless of ability/disability, succeed.  I don't expect teachers to know right off the bat every single adaptation that they will have to make for every single student.  Hopefully, as general education teachers get more special ed training, many of those adaptations will already be in place.  But I do expect teachers to question themselves and their students so that the classroom is the most accessible that it can be.  We must not simply include students with disabilities, but we must accept them, integrate them into our classroom, and embrace their potential, just like we should do with every student.

So yes, I think we need to redefine inclusion.  Shout it loud, from the hilltops, from schools all across the globe, with all our unique voices, that inclusion is not a place.  Inclusion is a practice.  Inclusion is a right.  And a weak, half-assed facsimile of inclusion is worse than no inclusion at all.

Read More

(Blog) Carnival Ride

Well, after hosting the Disability Blog Carnival back in February, I'm back for another round.  I'm hosting the June Disability Blog Carnival and the theme, I've decided, is going to be community.  How does a disability community, or the lack of, affect you?  How do you define a disability community?  I'm excited to read all your posts!  I'm a bit late in getting the announcement up this time around, so I'll give you plenty of time to write all your posts - I know how writer's block can get in the way.  Try and have your posts to me by the 25th, but if you submit a late post, I'll add it in later.  Comment on this post (I've disabled word verification for those of you who may have trouble interpreting it) or email me with your post at caraliebowitz@gmail.com.  Or, if you have me on Facebook, you can also submit it to me that way.  Any way you can get it to me is fine.  Happy blogging everyone!

"God put us here on this carnival ride
We close our eyes
Never knowing where it will take us next
Babies are born and at the same time, someone's taking their last breath
It's the wheel of the world
It's the wheel of the world turning around."

-Wheel of the World by Carrie Underwood 

Read More

Self-Care is a B*tch

I never thought too much about self care before I went to college.  Sure, some aspects of self care were more difficult for me, but I had been completely independent in all my self-care activities since my mid teens.  Surely self care wouldn't be difficult for me in college, after all, I took care of myself every day.  I didn't need a personal assistant like some of my friends, I could do everything on my own.  Taking care of myself in college would be a breeze; in fact, I barely thought about it before I left.

Oh how wrong I was.  Sure, at home, I did everything major myself - showering, dressing, etc., sometimes with the help of some adaptive equipment, like a shower chair or my awesome three headed toothbrush.  But I completely didn't take into account the little things, or how the college environment differs from the home environment.

At home, the farthest I had to carry a plate was about five feet to the kitchen, and it was usually an empty plate at the end of a meal, and not a full plate at the beginning of a meal.  In college, I had to navigate a crowded dining hall while carrying a full plate of food and usually a drink.  If the dining hall was particularly packed, it could take me up to fifteen, twenty minutes to find a seat, and that's after my wrists started screaming in pain.  The back dining room was often open for students on crowded days, but I had to navigate a long hallway while carrying my food in order to get there.  That's not to mention that's after I usually stood in a long line for food, while my back, knees, feet, and ankles all ached in tandem.

.....And people wonder why I like to take my scooter to the dining hall a lot.

It's the little things that really get me.  My first semester, I got sick.  Nothing serious, just a bad cold.  I went to the health center and they gave me a bottle of cough syrup.  Stupid me didn't think to check if it was a child proof cap or not til I got back to my room.  I spent over a half hour trying to open the damn cap before I had to go somewhere.  I spent the next two hours hacking my lungs out during a play performance because I couldn't open the cough syrup!  I eventually got it open only for a majority of it to spray all over.  It literally looked like a massacre had occurred in my bathroom.

I didn't think taking care of myself would be hard in college.  It turns out it kind of was. I didn't realize how accustomed I was to having my parents do things for me. I have now finished my freshman year and have learned a lot about taking care of myself. I am definitely a more independent person now. I look forward to carrying that knowledge into the rest of my college career as well as the rest of my life.

Please note that this post is for the May disability blog carnival.  Happy blogging everyone!

Read More

New bloggy things!

Hey all,

I would like to direct your attention to a brand new blog project cooked up by me and my friend Kyle.  No worries, I'll still be posting on Butterfly Dreams, but I'll ALSO be posting over there on Palsy Snark.  It's similar to this blog, except each post deals with a specific issue and has both of us awesome palsy people commenting on it.  Sometimes we agree, sometimes we don't, but it's always interesting.  So go over to http://www.palsysnark.com and follow us!  We have a lot to say.

Also, I'm going to insert a shameless plug for a friend here.  My friend Dani has been the best friend I've made in college, and she has a collection of diagnoses that even took ME aback for a bit.  She recently started a blog at my urging and so far she's doing great!  So go on over to Defying Disabilities and check her out!  Follow her!  She has a lot of opinions, some of which clash with mine, but hey, debate makes life interesting!

Watch this space for the theme for the June Disability Blog Carnival, hosted by yours truly!

Read More