A Response to The Cerebral Palsy Foundation's #JustSayHi Campaign from Someone With CP

505 words

4 minute read

When I first saw news about this campaign on social media yesterday, I was flummoxed:

Now that I've had time to consider it more, I feel even more strongly about speaking out about the problems this campaign exacerbates.  I'm sure it was started with the best of intentions, but the bottom line is that it does nothing but widen the gap between people with CP and those without it.

Unless you are an ultra friendly person, who genuinely does greet everyone you see with a "hi", something like this is singling us out unnecessarily.  (And as Emily Ladau so brilliantly pointed out in her article #JustActNormally - A Response to The Cerebral Palsy Foundation's #JustSayHi Campaign:  ""If you swapped out disability for any other appearance-related identifier, how would this campaign go over? ‪#‎JustSayHi‬ to Asian people. #JustSayHi to people with red hair. #JustSayHi to people who look like they weigh more than you do.")  No one likes being singled out.

Having CP for me means second guessing people's motives a lot.  From the time I was very young, I was aware of the fact that some people treated me differently because of my CP.  This campaign makes me keenly aware that now, when I go out, and someone does something as innocent as greeting me, I'll wonder, "Why are they saying hi?  Is it just a greeting or are they doing it because of that campaign?"  I don't want to spend time second guessing why people are talking to me.

Here's the honest truth:  if I'm out shopping, or with friends or family and I don't know you?  Chances are, I just want to be able to carry on with what I'm doing and not be worried that someone I don't know will seek me out to #justsayhi in order to "start a conversation" with me.  Plus, I can't shake the feeling that the whole "start a conversation" business is actually an in to ask really invasive questions.  I don't want that.

I hate the fact that a campaign like this even exists, to be frank.  The idea that the general public needs to something like this to teach them how to interact with people like me does nothing but make me feel like I am difficult, different, other, and separate.  In reality, I am just a person.  Just a woman.  Yes, I have CP.  Yes, my disability is a huge part of my identity.  But I don't want people seeking me out solely because of that identity.  It's patronizing.  It's condescending.  It's dehumanizing.  Please, just don't do it.

If you want to talk to me, do it.  I'm a pretty friendly person.  Ask me what I'm reading.  What I think of the latest episode of Grey's Anatomy.  What I'm passionate about.  What I love about my family.  About my friends.  But talk to me because you want to get to know me, not because I have Cerebral Palsy.

And not because of some campaign.

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World CP Day

246 words

2 minute read

Today is World CP Day, which is all about making the world better for those of us with CP.

Having CP does come with some perks.  First and foremost, a great community of people who are living with it, too.  Our shared experiences with it.  Our particular facial features (I like to call it CP Face) which are often seen among people with CP.  We have awesome transportation (seriously, let's hear it for Greenie, my wheelchair.)

As World CP Day is about making the world better for us, here are a few things I'd like to see improved upon:

Awareness:  Look up Cerebral Palsy on your own time. Learn about it.  Realize that having CP is not a tragedy.  It is not something to be overcome

Access:  This goes beyond physical access (which, of course, is needed and awesome) and extends to conversations about things that concern those of us with CP.  Don't shut us out of those conversations.  Don't shut us down because we are not saying what you think we should.  We are the only ones who can speak for our own experiences as disabled people.

Ableism:  Telling someone with CP "I've never seen you as handicapped", pushing us without permission, or demanding we educate you are all forms of discrimination against disabled people.  Extend to us the same common courtesy you would to a nondisabled person.  We deserve the same respect.

CP Friends, celebrate yourselves and each other today!  Happy World CP Day!

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Updating

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1 minute read

If you're here a lot, you may notice that the little green bar along the top of my blog has changed some.

I've added a 'Home' button so you can easily find your way back if you are on an individual post.

I've also added an 'About Me' section (what was previously my No Shame Day post, which, I feel, gives a good summary of me.)

You'll also see a section called 'Published Works' where you can see my work in other places, outside of this blog.

'Favorite Posts' still exists (and has now has Tonia's Big List..." and "Do's and Don'ts' linked there.)

And finally, the 'Contact Me' button will take you to my Tonia Says Facebook page, which is the easiest way to get in touch with me.

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What You Need to Know About Blogging About Your Disabled Kids

1,342 words

10 minute read

It's only been a couple of years since I began my journey as a disability advocate, and in those two years, my eyes have been opened to a big problem: Parents crossing the line when blogging about their disabled kids.

My only saving grace from this, personally, is that the internet didn't exist in my house growing up until I was 17.  So, for nearly all of my childhood, even the possibility of sharing about myself or my sister to the masses was simply not an option.  Add to that my mom's reluctance to even be tagged in pictures on Facebook, much less share family's personal business with anyone outside the family and my grandma only ever complaining about very minor things unrelated to my sis or I in a private diary, I have been in the clear.  The only sharing about me is done by me.  

Other disabled people, though?  Not so lucky.

Now, I know what you might be thinking:  "What line?  Where is it?  No one told me there was a line!"

Well, as the previous acronym used in What You Need to Know About Pushing Someone's Wheelchair Without Permission was so useful, here is another one to consider before you blog about more personal aspects of your disabled child's life:  CARE.

I know parent-of blogs are for other parents of disabled kids, and they are focused on how your child's disability impacts you.  However, for these guidelines, parents will need to step aside and allow the disabled person to be your focus.

C - Consent

verb

1. 1.

   give permission for something to happen.

Did the disabled person in your life give consent to have this personal information shared with the wider world? If you are writing about us, let us read it.  Let us tell you whether or not we are comfortable with you sharing it with strangers or not.  Keep in mind, very small children cannot consent, and disabled people with intellectual or other developmental disabilities may not be able to consent in a way that is readily understood.  In this case, even more caution is needed.  Think about yourself at a similar age, and what you're about to share with the whole electronic world.  

A - Apt

adjective

1. 1.

   appropriate or suitable in the circumstances.

Is your blog the appropriate place to share that your 18-year-old pees in the bathtub?  Or that your 12-year-old holds their bowels until they have an accident because it's the only thing they feel able to be in control of?  Nope.  Probably best to save those types of things for private journals, or personal messages to a family member or a close friend who knows you and your circumstances very well.  Is your blog the appropriate venue to share that you feel like ending not only your life, but your 15-year-old's as well, because their behavior is just too difficult?  That would be one for your therapist's office.  (Seriously, if you feel like this, make an appointment with your mental health professional ASAP.  Don't blog about it.)

R - Respectful

verb

1. 1.

   to act in a way which shows that you are aware of (someone's rights, wishes, etc.)
2. 
   

Ask yourself, does this post, or this blog, respect my child and their dignity?  Does it respect my child's community?  Posts that detail a doctor offering an abortion after a baby's in utero diagnosis - and detailing how - after that moment you did not feel you were carrying a baby, only a diagnosis?  These are crushing to read as a disabled adult in your child's community.  Posts, videos, or pictures detailing your child's autistic meltdown or shutdown?  So disrespectful.  Pictures of your children in vulnerable positions (distressed or in pain after a surgery?)  No.  A photo of your school age child or teenager in just a diaper, or bra and undies?  Unacceptable.  Posts about how it's like your NICU baby (who is alive, despite medical complications and premature birth) died because they are not home with the family?  Break my heart, and I hope that child never finds that post when they grow up...  

E - Edifying

adjective

1. 1.  to teach (someone) in a way that improves the mind or character.

Write your blog with your child's dignity, personhood and self esteem at the forefront of your mind.  To help with this, let me give you an example of a blog post from a parent's perspective that is not meant to edify:

Sometimes, being a special needs parent is really hard.

This morning, I got up to get all 4 kids out the door for school - my girls with CP - to 4th grade, and my boys to kindergarten and preschool.  They all caught their buses, and I thought I'd have a couple of hours to get the kitchen back into shape, grab some breakfast, throw some laundry in, clean the house and maybe run to the store before my youngest got home at 11:15.

But the kids were barely gone an hour before the phone rang.  It was my daughters' school.  One of my twins (Jessie, who's CP is more severe) had an accident right after getting to school.  She's been toilet trained reliably since she was a toddler, so this caught me off guard.  It made me so frustrated and upset.  I see all the other 9-year-olds and I know none of them are still having incontinence issues, especially at school.  I hid my frustration...and let's face it, my anger (none of the other moms in the neighborhood have to deal with this!  Their 9 year olds are playing sports, going to the park and doing all the things my kid can't do.)

She was so embarrassed - almost crying, but kept it together - and was very quiet the whole way home.  She didn't say much to me as I helped her out of her dirty clothes and into the tub.  I don't think she's sick, so that's something.  I'll close with this picture of her all cleaned up and watching some TV with her little brother.  Still a little down but always inspiring.  I can't imagine living with a disability every day like she does.  I don't think I'd make it.  Sometimes I feel so guilty she can't have a normal life, though.

Please tell me some other CP-moms relate to this...

...versus one that is edifying:

This morning, I got up to get all 4 kids out the door for school - my girls with CP - to 4th grade, and my boys to kindergarten and preschool.  They all caught their buses, and I thought I'd have a couple of hours to get the kitchen back into shape, grab some breakfast, throw some laundry in, clean the house and maybe run to the store before my youngest got home at 11:15.

Unfortunately, the girls' school called about an hour after the bus dropped them off.  Jessie had to be picked up.  No details, because her privacy is non-negotiable.  Suffice it to say, she had a rough morning, and is home now, trying to unwind a bit and watching some cartoons with her little brother.

Sometimes, being a parent is hard.  I'm not sure if today was a reality check or if it was just a glitch, but it's tough to see any of my kids having a hard time.  Let's face it, it's tough to be a mom some days, and to know what to do.  It's hard to have to drop everything, when I really hoped to get a shower and maybe catch a few minutes of Kelly and Michael, in between loads of laundry.

Guess it'll have to sit in the DVR a while until life calms down...

I sincerely hope this is something parents take on board and feel free to use as a resource when blogging about your disabled kids.  Until next time, here's my face, bidding you a serious farewell:

Friends, what is something that your parents or caregivers have done that let you know they care?  Sound off in the comments!

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3 Things Disabled People Aren't Required to Provide The Nondisabled Public

499 words

4 minute read

1.  Education:
"How can those without a disability be educated if those with the disability feel that it is not their job?"  

Many times, we, as disabled people are looked upon to educate the people around us (at their demand.)  The reality is, we do not exist to educate the nondisabled population.  How can you be educated if not by demanding a disabled person give you an answer to your question?  You can Google, searching for resources specifically written by disabled people.  The information is out there, if you choose to look for it.  If we choose to share information about our community, that is one thing, but we are in no way required to educate you.  (If you are looking for a place to start, try Tonia's Big List of Resources for Learning About Disabilities.)

2.  Explanation:
"Why are you in a wheelchair?"

I can't count the times that I have been out, and been suddenly questioned in this manner by someone I don't know well, or don't know at all.  By asking questions such as these you are demanding to know someone's medical history, which is extremely personal, and not for public consumption.  The existence of a wheelchair, crutches, a walker, a trach, even a limp, is not an invitation to ask this question.  If you have a family member or friend who is disabled and they bring it up with you, then feel free to listen.  Follow our lead with this.  If it doesn't come up in conversation, assume it's off the table.

3.  Inspiration:
"Are you taking your daily walk?  To inspire me?"

I walked out of my apartment earlier this summer to the above question from someone who lives and works the accessible housing where I currently live.  The question caught me so off-guard, I could not think of a response (and because I was concentrating on walking and not tripping or falling.)  But what I wished I could say was, "No, I'm actually walking for me and my health.  It has nothing to do with you."  In short, disabled people don't exist to provide inspiration to nondisabled people by doing humdrum, everyday things.  Looking at us in this way is reductive and damaging.  We are whole, complex people, not objects nondisabled people can measure their own suffering against.  We have days when we're crabby.  Days when we're frazzled.  Days when we are greedy, selfish and mean.  We are not one-dimensional,  and perpetually sweet or positive.  We also have days that are awesome.  We deserve to experience both extremes.  We deserve to be able to live our lives without being looked upon as objects of pity or inspiration.

So, what can you say when you see us out?  Nod, or say hello.  The same as you would anyone else.  

[Tonia, left, and Tara, right, walking across a parking lot in 2008.]

Disabled friends, how do you wish the public would interact with you?

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What You Need to Know About Pushing Someone's Wheelchair Without Permission

774 words

6 minute read

When I was nineteen, I traveled out of the country for the first time without my parents.  Once the plane landed, a man retrieved my wheelchair from where it had been stored during the flight.  I got in while he held it steady.  I buckled myself in, and before I had time to think or react, I felt myself being pushed - not by my sister or friends (who I had traveled with) but by a strange man I had never met.

I froze.

I couldn't speak.

This man spoke Spanish, and I had studied it all four years in high school.  I could understand much more than I could speak, but at that moment, my foreign language comprehension was stalled.  That is, until I heard the word salida.  I knew that meant "exit," and my panic increased.  We were headed for the doors, then outside and then, who knew where?

Luckily one of the girls I was traveling with also had a passing understanding of Spanish and caught the word, too, insisting "No salida!  No!"

This was not the first time I had been pushed without my consent, but it was the scariest. I have used a wheelchair since I was around seven years old.  Recently, I found myself a part of a conversation about this very thing.  

A mother and her daughter (in a wheelchair) were at a store.  Mom was checking out at the counter, while her daughter took her time on her way to the front, looking at things in the aisles.  Moments later, her daughter appeared, being pushed by a woman neither of them knew.  Mom saw her daughter's frustrated expression and asked, "Did she ask you to push her?"  The woman responded: "No.  I just helped her, and brought her to you."

While most of the people who chimed in regarding this discussion recognized how wrong it was, a few did not.  The fact that the random woman was "helping" a school aged child who did not need help or ask for it did not seem to matter.  What did matter?  The random woman's feelings.  She was only trying to help, after all, and she meant well.  Mom should have introduced the child to the stranger who pushed her without consent.  Mom missed an opportunity to educate.  The child should have been grateful.  Polite.  Should have said thank you.

I was even told that if we (disabled people) do not educate non-disabled people, how are they supposed to know it's not okay to push a person against their will?

So, non-disabled people who need a tutorial, here's a clever acronym for you to remember.  Whenever you see an unfamiliar child, teenager or adult in a wheelchair during your day-to-day life, and decide that we need your help:  STOP.

S - Stop
This is a pretty simple step.  Just stop, before you rush to our aid.

T - Think
Our wheelchairs are an extension of our physical bodies.  (In essence, our wheelchairs function as our legs.)  By rushing over, grabbing our chairs and starting to push us, it's as if you are physically picking up a non-disabled child, teenager or adult you don't know, and carrying them to where you assume they need to go.  Sounds pretty rude, right?  Pretty invasive?  It is.  It's jarring.  It's frightening.  Frankly, it's violating.  There's a good reason you don't see strangers physically transporting each other in this way - without warning, and without waiting for consent.

O - Offer Help
Come around, so you can see our faces, and say something like, "Do you need a push?"  This gives us the dignity and the opportunity to either accept your help, or turn it down.  (If we say or indicate "no", accept that and move on.  Don't insist on helping us.)

P - Push Only If You See/Hear Consent
If, and only if you see or hear consent, you are welcome to push us.  There is no reason for 3-year-olds or 6-year-olds to not have handlebars installed on their chairs just to dissuade eager pushers.  It's ridiculously unnecessary to suggest a 10-year-old should have a sign on the back of their chair declaring them independent, or insisting they will ask if they need help.  Just like there is no reason a 19-year-old should be pushed toward the exit of an airport in a foreign country without consent.  Being in control of our bodies and where we go is a basic human right.

Disabled friends, can you relate?  Have you ever been pushed without permission by a stranger?  How did it make you feel?  Sound off in the comments.

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A Conversation About Overcomer by Mandisa

279 words

2 minute read

Last night, Tara asked if I had checked out this video.  She'd seen it on Facebook, via this post:

So, we watched it, and admittedly, I thought it was pretty good.  Definitely better than Flawless by MercyMe (which I reviewed - or ranted angrily about - recently.)  I told Tara as much, seeing as how she asked me what I thought in the first place. 

She replied, "That's because there's no one like you on it.  If this video had someone in a wheelchair would you feel the same?"

I admitted I wasn't sure.  There were several things I liked: mainly, that all the participants in the video were adults and therefore, had consented to not only being in the video, but also what content was shared about their personal experience.  I'm also, generally a fan of Mandisa.  Her voice is stellar, and her video didn't overtly pigeon hole disabled people and portray them as less than.

Tara persisted, "You don't think this walks the line toward inspiration porn?"

Again, I hadn't thought about it.  I asked Tara "What do you think?"

"I don't know!" she admitted, insisting that this video made her feel "some kind of way" but couldn't quite articulate it.  "There's so little representation for brain injury survivors anyway...but...I mean, doesn't this make you feel like people are being put on a pedestal for living their everyday lives?"

For my sister, brain injury recovery was (and is) a part of her everyday life. So, as she put it, a video like this, while not overtly harmful, "doesn't really help."

What do you think of Mandisa's Overcomer video?

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