Tuesday, March 31, 2015

Answering What It's Like to Be a Woman in a Wheelchair Questions

Having watched Ask a Girl in a Wheelchair, I thought I'd answer these questions myself, as we are not all the same.

Have you ever used your wheelchair as a weapon?

Yes, I have.  Not against strangers, but against my sis once in college, when she wouldn't let me out of our dorm.  (That's not to say I wouldn't hesitate to use it, or my crutches, as weapons if I needed to.)

Does it feel like people are going out of their way to be nice to you?

Sometimes!  And I can totally tell the difference between a natural, genuine interaction and one that isn't.  

Does it bug you if people ask you if you need help with anything?

No, it doesn't bother me.  Everyone needs a hand once in a while and if I look like I could use one, I appreciate being asked.  I don't so much appreciate if I politely turn down the help, and someone insists and helps anyway.  

I don’t have a disability can I use the stall in the handicap bathroom?

I agree with the woman in the video!  If there's a huge line, and all the other stalls are occupied, then do what you need to do.  But the ratio of accessible stalls to non accessible ones is like five to one.  If a non-accessible stall is available, and you don't need the accessible one, please leave that one open.

Would you rather people ignore the wheelchair?

No, that would be weird.  It's a part of me.  I'd rather you didn't become distracted by it or only talk about it, but don't be afraid to mention it either!  (When my chair was brand new, I loved to talk about it!)

Do you get upset when people ask you how you got into the wheelchair?

If they're children, I expect questions like this, but from adults who are complete strangers and feel entitled to the information, yes, it bothers me.  Plus, it's kind of a weird question, because for me, nothing happened.  I was born with Cerebral Palsy and I have used a chair since I was like, seven.

How does it make you feel when someone says you’re an inspiration?

Depends on what I'm an inspiration for...  Did I write something that impacted you or changed your views on something?  Then that's awesome.  It doesn't bother me to be viewed as inspiring for an actual reason or accomplishment, but if you're saying I'm an inspiration because I exist, or because I'm out in public, that bugs me.  

Is it particularly offensive when people stare at you?

There.  How do you like it?

What advice would you give young women in wheelchairs in terms of what to expect when they get older?

The best piece of advice I can give you is this:  First, there is nothing wrong with you.  You are awesome just the way you are.  It might not seem like it, but there are a lot of people in the world like you.  Secondly, the best thing you can do is learn how to speak up for yourself.  How you do this is up to you - but know that it's okay to say, "no" if something makes you uncomfortable, if you don't need help, or if you are being discriminated against.  Tell someone you trust right away if someone is hurting you (in any way).  Don't keep it to yourself.  It is not your fault.  You don't have to be polite if someone is mistreating you.  Be as loud as you want.  Your body is yours.  (Wheelchair and other adaptive equipment included.)  No one has a right to hurt you.  You are valuable.  You matter.  When you get older, you'll need to learn how to project your voice a little extra so people can hear you, especially in crowds.  You'll have to learn to call ahead to new venues and ask lots of questions about accessibility to determine if you will be able to go there.  Make sure you have good insurance that will cover your adaptive equipment.  Demand equal treatment.  You are worth it.

Friday, March 27, 2015

Friday, March 20, 2015

Exercise Palooza: Week 6

Up to 11 reps on abs/core and 16 on triceps.  I've started splitting up triceps morning/afternoon and obliques morning/afternoon/evening.  Today, my super stretchy right side seemed to get a little too much stretch.  Luckily tomorrow's an off day, so I can hopefully take some time off stretching (at least that side.)

On the positive side of things, I took Before pictures on February 25 - a few weeks into exercising.  March 18 (21 days later) I took an After picture and I am pretty stoked about the progress that's happening.  No more paunch.  Slimmer legs.  And more important than all of that, I feel better.  So encouraged to be able to see such a drastic change in three weeks' time.

Can only get better from here!

Wednesday, March 18, 2015

Noah Galloway on Dancing with the Stars (Week 1)

It's interesting to see another disabled person competing on Dancing with the Stars.  I always like seeing how movement and choreography is adapted in these cases.  I don't know much about Noah, other than that his kids are adorable!  I'm wondering what's up with the costuming, though.  While I can see, perhaps, the need for keeping the shirt sleeve short and out of the way, what's the purpose of giving him two different-length pant legs?  I kind of hope that stops in the coming weeks because it just feels unnecessary.

I liked and respected Julianne's comments about their connection, trust and the choreography (and the fact that "inspiration" never once crossed her lips.)  Bruno's weird reference to Noah having a "trump card" and to "play on that" was a little strange.  I can't with Carrie Ann and her major condescension.  It's been going on since Amy competed.  She and Len are "inspired."  But what I want to know is, does anyone look at his face (or Amy's when she was on) during these kinds of critiques?  I know that for whatever reason, being referred to as an inspiration is supposed to be a compliment, but I think, to most disabled people (for me, at the very least) it feels demeaning.

I wonder if he'll be given any constructive criticism next week.  I kind of hope so, if for no other reason than everyone else gets it.  I want to see Noah judged on the same basis everyone else is.

At least the scores weren't outlandishly high with pity points (only a couple, I think...)

Follow Noah Galloway on Twitter

Friday, March 13, 2015

Exercise Palooza: Week 5

Not much new to update on the exercise front: 3 days on, 1 day off is still working for me.  As today is my off day, tomorrow, I'll be upping my arms and core to 10 reps (double were I started) and triceps to 15 (triple where I started.)  Slow and steady, right?  I like that there's progress happening.

Note: Stretching and walking laps still happens, even on off days.

Tuesday, March 10, 2015

Cerebral Palsy Awareness Month: Day 10: CP and Christianity

It's been several years now, since I have set foot in a church, and there's a reason for that.  It's a reason that I rarely see mentioned or discussed in any depth.  It is as painful now to me as it was every time it happened to me, and still, I think it's so important that it gets talked about.

There is rampant ableism that exists in certain churches and in certain Christian mindsets.  I am not speaking of every church, nor of every Christian.  I am well aware that there are some Christians who think that what I'm about to discuss is as abhorrent as it is.  The very first church I attended at age nine (that I was later confirmed in, at age 14) was a lovely place.  While it didn't have many kids my age, it had adults who loved and valued the kids.  I also never heard a word spoken about my crutches, which I used all the time there.

Once I graduated high school, though, and was experiencing personal difficulties, I reached out to a friend, who invited me to church with them.  At first, it was exactly what I needed: community, people who cared, that sense of belonging.  Once I started attending outside of Wednesday night youth group, though, I felt a shift.

One thing that very much attracted me to this church was the freedom in it.  People were encouraged, not only to sing, during the worship time, but to move around.  People jumped up and down, or danced by themselves.  Being quite short, and having the lyrics of the songs projected on a screen at the front of the sanctuary, I was often drawn there out of necessity, so I could see the words without being blocked by tall people.  But that's when I began to be approached by fellow congregants after the service, who told me how inspired they were to see me during praise and worship.  Now, I wouldn't call what I was doing dancing, but I definitely moved and it was this that caught people's attention.  They commented on how inspiring it was to see me dancing or standing, or anything, really.  Anything that had to do with my physical body, and what it could do.

It happened so much I began to feel self-conscious about expressing myself, for fear of being a distraction to others. There were signs all over church that read “There are no wheelchairs in heaven.” I didn't routinely use mine in church, but I did use one. And seeing that sentiment everywhere made me feel like I was not worthy to even be there. A dirty look and an accusation when I slowly passed a Bible study group on a stairway at a nearby church, because their elevator was out of service.

They’d tell me, “You’re going to dance one day,” despite the fact that I was dancing already. As if it didn't count unless I did it unaided. People in church and outside of it became obsessed with praying “for my legs.” They asked invasive questions. (“Can you walk without crutches? Not even a little? Not even if I hold your hands? You know God is going to heal you.”) I was harassed by the same woman during a meeting to the point where I left the sanctuary and went outside because she would not leave me alone. When there was prayer for healing going on and I didn't go forward, I was the subject of children’s questions: (“Why isn't she going up there? Doesn't she want to be healed?”) Sometimes people didn't ask at all before they moved chairs forcefully away from me and began praying. And when I started saying no to the ones who asked, they got very offended.

I’d naively gone forward at a conference very early on, less than a year after joining the church. I didn't know what to expect, only that I was desperate for acceptance, and if I was able to walk without crutches…if I didn't need a wheelchair…maybe I’d be more acceptable to these people. Less of a distraction. Maybe they’d feel more comfortable around me. So, I endured it when a man took my crutches away from me and leaned them against a seat, in front of a room full of expectant people. They believed God would perform a miracle. I wanted to believe, too. So, when he started walking with me back and forth in front of everyone, holding onto my hands, I went with it. At that point, I didn't feel I had a choice. And as the walking progressed and I realized he was trying to let go of my hands, I was terrified. Cerebral Palsy for me means tense muscles and poor coordination in my legs, as well as a general lack of balance. If this guy let go of my hands, I knew I was going to fall. So, I was determined to hang onto him. He stopped at one point and thrust a microphone in my face:

"Do you believe that God can heal you?" he asked.

I hesitated. “I want to,” I admitted, but couldn't put out of my mind how much of a realist I was or how much of a fantasy this seemed to be. What were the countless surgeries I had endured for? What about the hours of physical and occupational therapy that punctuated my childhood? Were they all for nothing? If God could just take away my disability? So, we went on. And on. And on. Eventually, he gave up.

The pastor of this church told me God had already healed me, but it was my lack of faith that kept it from actually happening. I was crushed.

Is it any wonder that, eventually, I started turning down people’s offers to pray for me?

But it wasn't just at home. I went to a nationwide Christian conference out of state, with a bunch of church friends. While there, four separate complete strangers approached me with messages God gave them about me. All of them related to God healing me physically. And I couldn't help thinking that if God really is speaking to all of these people about me, why wouldn't He tell them that I don’t want to be fixed? And maybe give them an idea of some areas I really could use prayer for? It became very clear that their wanting to pray for me wasn't about God. It was about them. It was about their discomfort with anything or anyone different from them. The first night of that conference, in fact, I wanted nothing more than to leave and never come back when a person in charge at that conference looked at my chair, not at me, and said, “There’s no place for that here. The only place for wheelchairs is under the bleachers.”

What can you take away from this?  

If you're disabled or chronically or terminally ill, you can take the fact that you are not alone.  After attending that nationwide Christian conference, I went forward and spoke to my congregation about my disillusionment about being constantly asked if people could pray for my physical body.  Afterward, an older gentleman came up, one of the only other disabled people in our congregation.  He thanked me for what I had said because the same thing had been happening to him for years.  So, you are not alone.  You don't have to continue going to a church that does not support you and love you.  There are other places.  There are other people, Christian people, who know that you don't need to be fixed.

If you are an able parent or family member or friend of a disabled person, first pay attention to how people at church interact with your child or loved one.  Are they respected?  (Their physical space as well as their personhood?)  Pay attention to how disability is framed in the church you attend.  Often, in Biblical times, things viewed as negative were thought to be brought on by sin.  In the New Testament there is quite a bit of  "This person's not disabled because of sin but so that God's power can be seen at work in him when he gets healed."  That is also damaging and detrimental.  Focus instead on chapters like Pslam 139, which resonated deeply with me as a young teenager.  Tell that person in your life that the Bible was written at a different time in history when little was known about disability or how to help those with it.  If your child or family member or friend confides in you and tells you they are uncomfortable with the way they are being treated, or that they are being discriminated against, please believe them, and don't pressure them to stay somewhere they don't feel safe, loved and valued for who they are.

I hope, someday, to feel at home in a church again, but it is not my top priority.  It is, as Rachel Scott once wrote, to:  "Create in me, the church, so that wherever I go, I will find sanctuary."

Monday, March 9, 2015

Cerebral Palsy Awareness Month: Day 9: Steps

I was leaving my parents' house yesterday (with the help of my youngest brother) because the garage steps are tricky and the front steps even more so.  He held my arm for a split second, more moral support than physical.  It takes some intense motor planning to organize my feet and crutches on the right steps in order to get down them without falling.

Once I cleared them, and walked past the front steps, I was struck by a particularly visceral memory.  I was nine years old, and eager to go outside and play with my sister and younger brothers.  I remembered consciously choosing to go out the front door and walk around the house, instead of navigating the nearly impossible deck stairs.

I was in such a hurry that I did what I was used to doing indoors at the top of any staircase: I dropped one of my crutches down the two steep concrete steps.  On the indoor stairs, there's a railing and having the other crutch is enough to help me down, but this time, I had inadvertently stranded myself.  My feet were on the top of the steps.  My single remaining crutch was a step down and the other was out of reach.

My siblings were already out back and my mom was inside, but the windows were open.  I stood there for a while, panicked.  I could feel the muscles in my legs stiffening with fear and exertion.  Finally, I started yelling for help.

Only it didn't come.  My mom (probably figuring us kids were playing a game) called for us to be quiet.  I was freaking out, imagining the fall forward, flat on my face, or the fall backward, cracking my head open.  By some miracle, I fell on my knees on that very top level of the steps and was uninjured.

The moment left me so shaken that I detailed it in a handwriting assignment for fourth grade the following week.  As I was (apparently) the first disabled student my classroom teacher had ever seen, she made it her duty to fawn over me and give me undue attention for simple things.  Everyone in the class had written about their best day ever, and then, about their worst.

The best-written papers were read by the teacher out loud to the class.  I figured mine was about the middle of the pack.  I knew there were kids who were worse writers than I was, but I also knew there were better writers.  I didn't expect to have mine picked, and listening to the teacher read about how my worst day ever was being stranded on the front steps of my own house, in her stilted, formal voice, I felt like I was being mocked.  I also knew, immediately, that none of the other kids' worst days were like mine.  They probably thought my worst day was silly.  I felt like my teacher probably felt the same, and was just humoring me, in an "Oh, the poor thing.  Isn't that cute?" manner.

I almost shared the story with my little brother, who wasn't even born yet at the time, but the moment passed.  So, I thought I'd share it here instead.

Anybody else have scary moments related to their disability that they feel misunderstood about?  Or just have something you want to add?  Feel free to sound off in the comments.

Sunday, March 8, 2015

Cerebral Palsy Awareness Month: Day 8: Letter To My Younger Self

As it is apparently International Women's Day and as I just read a fabulous Letter to My Younger Self by Emily Ladau, I thought, what a good idea.  (When you check out the #DearMe  video and see that there appears to be zero disability representation, it seems like an even better idea.)

So, here I go...


Dear Me (12-year-old Tonia),

Look at that smile.  It was hiding a lot, wasn't it?  

Listen, I know your biggest dream right now is to leave every single vestige of CP so far in the dust that you never have to think about it again.  I know you still think if you work hard enough, you'll be able to walk without crutches.  I know you think that will solve everything. That it will make you lovable.  Let me tell you something, though (and I know you'll roll your eyes, but hear me out.  I'm you, so I know you pretty well.)

You ARE lovable.  You.  Right now.  Sitting on that couch in 1993.  You.  Are.  Lovable.  You don't need to do anything to make yourself so.  You, with your love of Babysitter's Club books and Full House and Mary-Kate and Ashley Olsen music.  (It makes sense that you liked them!  They were twins...you're a twin, and it's not like you saw a lot of twins on TV.)  You with your hair that's too greasy.  You with your face that breaks out.  You with your crutches.  You with your wheelchair.  You with CP.

You are lovable, and CP does not make you broken or defective or bad or wrong.  You don't need to be fixed.  Those are lies.  You are awesome and perfect just the way you are!  I remember the way you cared about the new girl in seventh grade.  The way you made sure she felt loved and accepted.  I remember how you always put your homework first.  How you helped take care of your brothers.  I remember that you had the most vivid imagination.  I remember how you loved to write.  Hang onto that.  

Hang onto the experience you had at camp, where you made friends who were like you, but know that being more physically able did not make you lucky.  It's just a part of what makes you, you.  Life is not a competition.  Being more able does not make you better.  Just like being disabled does not make you worse.

I know how all the negative things are stuck in your head and you can't unhear them.  I'm so sorry.  You didn't deserve what was said to you.  You don't deserve what was done to you.  Other people's choices are not your fault.  I know you look in the mirror and wonder what's wrong with you because you have no interest in romance, in sex, and I am here to tell you there's a word for that and it's okay.  It's okay to love and value family and friendships as highly as you do.  It's okay that you don't have a boyfriend or girlfriend.  It's okay that you don't want one.

I wish I could tell you all the pain in your life is past, but scary things will happen to you and around you in the future.  You will lose and almost lose the dearest people in the world to you.  Listen to me when I say you will get through it.  You will carry it with you, but it will not define your life.  Cherish the people in your life while you have them.  I know it sounds corny but it's true.  And I know you love the people in your life well.

There are amazing things coming in your life, too.  A cousin, who will grow up to be one of your best freinds.  A baby brother (I know, right?  You and Tara have talked about wanting another sibling for years!  It will happen!  He's amazing!)  You will graduate high school with high honors.  You will go to college.  You will travel outside the country.  You will write novels and poetry and blog posts.  (Oh yeah, there's this thing called the internet.  I know the fam won't get a computer until next year, but in about four years, you'll understand...)  Your writing will be published.  You'll have friends who love you for who you are.  You will live on your own, in accessible housing.

You will.

I know things are hard right now, and I know last year was horrendous, but I want you to do something for me.  Stand in front of the mirror with your crutches.  Look at yourself.  All of yourself.  Crutches, scars, spastic muscles and all.  Now list all the positive things that make you, you.  I get that you might not be able to say them out loud.  So let's write them instead:  You're a twin.  You're a daughter.  You're a sister.  You're compassionate.  You love writing.  You love music, and singing.  You love your family.  You have CP.  You like sports.  You are disabled.  (If you're having trouble with older me sneaking in the disability stuff, try remembering the time Dad painted your crutches blue after surgery, because he wanted to do something nice for you.)  Your CP is a part of you.  It makes you uniquely you.  So stand taller, or sit taller, or smile wider, because it's the truth.  I'm grown up you.  I know these things.

You are lovable...and you are disabled.  They are not mutually exclusive.  You can be both.  You ARE both.

Trust me, every time you think people don't love you and accept you because of your CP, know that's a lie.

Because I do. 

I love you,
33-year-old Tonia

Cerebral Palsy Awareness Month: Day 7: Do You Want to Build a Snowman?

(Missed Day 7 yesterday so here it is)

With spring being (hopefully) just around the corner, and having enjoyed the first 40 degree day of the year yesterday...  Well, for some reason that makes me nostalgic about living in the Midwest and snow and making snowmen.

Getting through the snow with CP was always a bit of a challenge, but I loved getting out in it nonetheless.  So, one morning when Tara and I were six years old, and living with our great grandparents, our great grandpa told us, "I have a surprise for you!  Come outside!"  So I took my walker carefully down the front stoop and into the yard.

I looked around.  So did Tara.

Nothing was there.

"Where is it?" we asked.  "Where's the surprise?"

"Look on the table there," Grandpa suggested.

Myself (left) and Tara (right) with a tiny snowman between us on the picnic table.

Our faces say it all: my disappointed, forced smile, and Tara, in the middle of saying an offended, "Hey!"  A barely noticeable snowman was not our idea of a surprise.
Looking back, though, it is one of my most favorite memories, and I get a kick out of the mental image of my great grandpa going outside to build this snowman and find rocks and sticks and a leaf to make him just right.  There's barely any snow on the ground, so he must have had to really look to find enough to make those two little snowballs.  I love the idea that he thought of us.  That he did something this sweet for us, and took our picture so we'd remember the moment.

Have you surprised a disabled kid in your life lately?  Or if you are disabled, have you been on the receiving end of a nice surprise like this?  Tell me about it in the comments:

Friday, March 6, 2015

Cerebral Palsy Awareness Month: Day 6: Disability Simulation

Today, I fully recognize the harm in disability simulations.  I know they don't actually work.  I know they breed misunderstanding at best, and pity at worst for how "bad" those of us with disabilities must have it.

But let's back up about 20 years and look at this girl...

...Who, in school, looked more like this girl...

...And try to imagine being thirteen.  Try to imagine being in your eighth grade English class, and hearing that there's going to be an experiment where anyone who wants to can use a wheelchair for a certain amount of time during the day.

I can tell you that then, I couldn't contain my excitement.  In fact, I was so excited this was going on, I very nearly volunteered to go around in a wheelchair for a few hours, forgetting that, at that moment, I was in one.  I didn't resent the experimental tone at the time, I reveled in the fact that for a little while each day, some of my classmates would be at eye level with me.  I enjoyed having wheelchair races with a friend before school in the empty halls.  I even enjoyed when we were reprimanded by my sister's teacher that "This isn't the Indy 500!"

I was so desperate for acceptance at this age, and felt like such an outsider, that the idea that other people would get to experience what I did felt like camaraderie.  It felt like connection.  Like community.  It didn't matter that it was manufactured.  It didn't matter that those able bodied kids wouldn't really get it.  Or that they might pity me.  I don't remember anyone saying anything of the sort to me.  They said, "This is really hard!" and I thought "Finally!  Someone gets it!"

Disability simulation came up again in high school and I can tell you that as a disabled person (who had a ton of internalized ableism and honestly thought of myself as some kind of broken able person instead of a strong disabled person) it had the desired effect.  The able kids didn't ever want to be disabled...and neither did I.  It was exhausting and hard and scary and...negative.  (Leading someone in the way all the able kids were told to lead each other, while one closed their eyes to simulate blindness was all but impossible...and being suddenly "blind" and having to trust a random kid to push my chair to various places was beyond disconcerting.)  

It even happened in college.  One day, I came into one of the classes I needed for my Special Education major and found that my previously sweet-natured professor had morphed into a short-tempered accusatory and kind of scary person.  She was making all of us 20-somethings read aloud.  Some illegible handout that she'd given.  When we read what was on the page, she snapped at us for getting it wrong.  A crash course in dyslexia?

It wasn't until a year or so ago that I started reevaluating my status as a disabled person.  That I dared identify myself as a disabled person and not a "person with a disability" (as my briefly pursued college SPED major drilled into me.)  It was not until then that I learned that disabled is not a bad word, and it's not about us as a people.  If disabled people lived in a world with ramps and elevators, where everything was accessible and we all had the insurance we needed and the adaptive tech we needed?  I don't think I'd consider myself disabled then, honestly.  Because it's not my Cerebral Palsy that limits me.  It's society.

From there, I did some reading on disability simulation and it clicked:  this didn't help me.  My sense of community and of belonging forged out of these simulations wasn't positive.  It wasn't even real.  My real community, and my real people are fellow disabled people who are walking and rolling down this same road with me.

Hello, fellow travelers.  You are not alone.

Exercise-Palooza: Week 4

Taking last Friday and the weekend off for my sore muscle was definitely the right call.  (I shifted from doing five days on, two days off, to three days on and one day off.  That seems to be working better.)  As of Monday, I was back to exercising my legs, arms, core and balance (plus stretching, which has been going on simultaneously as well.  I'm already maxed out on a couple of things, as far as reps, which is satisfying (especially only having to do five slow push ups, two ways, oh my gosh,)  Balance is also at the max level.

For most of the rest of the arm series, and core, I'm currently at eight reps.  (I started at five.)  And for triceps, I'm currently at 13 reps (started at five and quickly increased to ten and beyond.)  My most favorite development this week is that my sis has joined me for the core series and triceps!  Makes it so much more fun to work out at least part of the day together!

And!  I don't know if I mentioned, but Tara bought an actual exercise mat (which is so much nicer than the blow up, roll out camping sleep pad I was using.)  I've started affectionately calling the new mat Fat Mat, because it's so nicely padded.

My only remaining update is that tomorrow, I will officially have been exercising for a whole month, which is pretty astounding for me.  Yesterday was my off day, and I always notice an off day because I end up chilling in the dark, wide awake, like I have all this extra energy.  When I work out, I think I sleep better.  (The dreams might even be more interesting.)

Thursday, March 5, 2015

Cerebral Palsy Awareness Month: Day 5: Throwback Thursday

1st grade.

Sitting on that little stool for picture day was never the easiest for me.  Since my CP impacts my posture and my balance, I was always left feeling like I would topple off one of these seats.  That was never more evident than in first grade, when I was apparently so unsteady that my first grade teacher ducked out of the way and held me steady for the picture.

I remember hoping she couldn't be seen once the picture was developed, and when her hand was visible, I was pretty embarrassed.  None of the other kids' pictures had the teacher's hand stabilizing them (and most importantly, my sis didn't need anyone to support her for her picture.)

Now, though, when I think about it, it's kind of great that she did that.  I mean, no one wants to feel separate from their peers, least of all when they're six, but decades later, I'm grateful.  Because it's the little things like this that matter.  Being able to pose for my school picture three years before the ADA even passed.  Teachers were still thinking on their feet then.  Finding ways to help and include us.

I kind of love that my teacher's helping hand is literally visible in this picture, because it conveys so much.

Wednesday, March 4, 2015

Cerebral Palsy Awareness Month: Day 4: What Do I Have to Say?

I have been thinking about what to blog about for the fourth day of CP Awareness Month, and I'm coming up empty.  It's not that I have a shortage of things to say, but more that I'm wondering if what I say is relevant.  Is it repetitive?  Do I have anything unique to say?

I wonder that, and then I find myself really falling head first and loving the posts I read on other blogs (The Squeaky Wheelchair and Transcending CP) and relating so much to what they post.  So, maybe being unique isn't the point?  Maybe sharing my own experience is the point.

My body is my body.  CP is an integral part of my body.  It's a part of my brain.  It's a part of my being.  So why do I feel an internal wall go up when I think about possibly writing about it?

On my mind today:  one of my tires is constantly deflating.  As I've never had air-filled tires, I'm not too impressed with them thus far.  I'd only had the chair about a month when  I noticed one wheel deflating more often than the other.  I'm glad they're lighter weight.  I'm glad they offer a smoother ride.  But, I don't know the first thing about changing a tire and I don't drive, which makes "just go to the bike shop and they'll do it for you" a bit problematic.

I miss gel filled tires.

Tuesday, March 3, 2015

Cerebral Palsy Awareness Month: Day 3: Awkward Responses to Children's Questions

I talk about my twin sister a lot around here, so you probably know I have one, and we're best friends, and we miss each other when we don't see each other for a few hours.  (Sometimes, when we are in different rooms of our apartment...)

Something I might not mention often is that she, too, has CP.  It's very mild, and causes her to walk with a limp.  She came home from work last night, loaded with Girl Scout cookies, and, as it turns out, a story about one Girl Scout and her mother, who were behind her in line.  My sis recounted the conversation to me, as close to verbatim as she could recall:

Girl Scout:  Does she have a disability?
Girl Scout's mom:  No, but she has a lot of abilities!
Girl Scout:  Well, then why does she walk funny?
Girl Scout's mom:  Because she went to the therapist and they told her to walk funny!

Now, why would anyone think this is helpful?  First of all, my sis was right there, and would have been open to answering the child's question had she been asked.  Denying disability and telling your child outlandish lies about it does nothing to educate that child.  My sis has actually been approached by a customer at work, whose child was newly diagnosed with some type of disability.  Having noticed my sister's limp, the woman apologetically asked if my sis had a disability and went on to say their child had just been diagnosed with something.  My sis was able to reassure her that her child's future was bright and she would do just fine.

Just in case the little girl scout or her mom happens upon this page, I'd like to leave a little truth behind for them.  Cerebral Palsy is a disability that effects movement and posture.  It's the result of damage to the brain that can occur from pregnancy through about age 3.  It does not get worse over time, and you can't catch it through close contact.  It is permanent, however.

As there are many different areas of the brain and many different degrees of damage sustained that can result in CP, it is possible to meet several people with it, and see several different variations of it.  For example, my sis and I are identical twins.  Our CP is not identical.  My sis walks unassisted with a minor limp, while I have always needed a walker, crutches or a wheelchair to get around, depending on my age, and the distance being covered.  Some people with CP have seizures, some of us have communication problems, some of us (like me) have trouble with depth perception.  For some of us, CP means an intellectual disability, however, CP is not synonymous with intellectual disability.

We are capable of many things, and we are disabled.  

This topic actually came up in a discussion I saw the other day: What would we want parents to tell their children who have questions about us?  And the best answer I saw was, "Let's ask them nicely and see if they'll tell us."  It's also a safe bet to assure your child that some people walk with a limp, and some don't.  Some have prostheses, or wheelchairs, or crutches, for all kinds of reasons, because everyone's body is different, and that's okay.  It's how we get around.

Lesson of the day?  Don't deny disability.  Don't lie to your child about the role of therapists or make ableist remarks about the woman in front of you.  Being curious is natural, but being ableist is learned.  So educate yourself and your child.

Monday, March 2, 2015

Cerebral Palsy Awareness Month: Day 2: Cats

This cat, Charley, has Cerebellar Hypoplasia, which reads (to me, at least) like CP in cats.  I think CH cats would be great, especially for someone with CP, because they're just like us!

Sunday, March 1, 2015

Cerebral Palsy Awareness Month: Day 1: Staring

Having CP and using a wheelchair, people are going to stare.  I haven't always known how to respond to it, especially when parents reprimand their kids to look away.  But thinking about this made me remember a few years ago when I was hanging out with a sweet 4-year-old I'll call Hailey.

She wanted to push my wheelchair (like sit in it and push) but she was so small that I compromised.  She sat on my lap and pushed with my help.  While we were doing laps in the hallway, another gentleman was also in the hall. who was an amputee.  Though Hailey was not curious about my disability any longer, she immediately noticed this man.  She said, "Why does he only have one leg?"

I told her, "Because some people have two legs and some people only have one."

That was a fine enough answer for her.  In fact, she later went home, and apparently was "playing wheelchair" with a stroller and her doll.