Monday, September 28, 2015

Question: Do you ever have trouble with your feet and lower legs swelling?

I haven't, actually!  The only thing I have trouble with is my legs feel cold a lot.  Gotten better since getting a couple pairs of legwarmers.   But elevating your feet and looking into those support stockings sounds like a good start.  The only thing I can think to recommend is a good Google search, and if things don't improve in a reasonable amount of time, perhaps, see your doctor?  Sorry I can't be of more help with this.

Updating

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.

Sunday, September 27, 2015

Tuesday, September 22, 2015

What You Need to Know About Blogging About Your Disabled Kids

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.)

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!

Sunday, September 20, 2015

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

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.  


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

Saturday, September 19, 2015

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

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 age 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.

Friday, September 11, 2015

A Conversation About Overcomer by Mandisa


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?

The Thing I Am Most Proud Of

The thing I'm proudest of isn't something I talk a lot about here:  I'm a published poet.

I've always loved writing, but didn't start writing poetry consistently until I was around 24.  I had this notebook I'd been given as part of a small church group I was attending with several other girls.  The same night I got it, I wrote my first poem in it.  Little did I know, that notebook would eventually hold most of the poems that went into my first book of poetry (published two years later.)  Four years later, I got published again - a book with more poems - and one where my sister took the photographs for the front and back covers.

I haven't written much poetry recently.  It's a desire that ebbs and flows.  Sometimes, it pours out of me (evidenced by the 5 or so notebooks and journals full of it, and the side blog that's entirely dedicated to it) but maybe someday soon I'll get back into the poetry-writing groove.

It definitely does my soul good.

Congratulatory flowers from my aunt, uncle and cousins after being published a second time in 2011

Monday, September 7, 2015

Music Video Review: Flawless by MercyMe


A friend gave me a heads-up about this music video the other day, via the blog post Mercy Me, Your "Flawless" Video is Flawed.  That post, in my opinion, does a phenomenal job addressing why the above video is so harmful to the disabled community.

As a part of the disabled community myself, I have a hard time remaining even remotely objective about things such as this.  Frankly, they bring back a lot of bad memories of my experience with the oil and water phenomenon that was CP and Christianity.  My gut reaction is to get angry, and to be super offended.  Because it's 2015, and disability is still largely viewed as the result of sin - rather than another aspect of us being "fearfully and wonderfully made."

This video brought back for me, in vivid detail, why exactly I stopped attending church almost a decade ago.  In short, it's because my CP was all anyone could see - and not in an accepting, loving, "that makes you unique" kind of way.  It was seen as a negative.  As something to fix.  Anytime a stranger in our large congregation approached me, I was either an inspiration for doing exactly what everyone else did, or I was asked if they could pray "for my legs."

My CP was the only thing that mattered.  My heart didn't.  My hurt didn't.  If I admitted to struggling with anxiety and depression I wasn't trusting God enough.  If I didn't get healed physically in front of the giant room full of people, it was my fault.  I didn't have enough faith.  Only in my 20's at the time, these experiences were brutal.

So, seeing disability framed this way, on par with guilt, selfishness, and doubt is such a visceral experience for me.  It brings back in unflinching detail these years of my life when I was seen in only a single dimension.  (A distraction at best, and unacceptable at worst.)

We are not what they say we are, disabled friends.  We are multi-dimensional, lovely, made in secret and meant to be here.  Our disability only adds to what makes us so amazingly unique, so wonderfully made.

Friday, September 4, 2015

My Biggest Insecurity

I'm going to be honest here and say that, by and large, my biggest insecurity is being disabled.  This is not because there is anything wrong with being disabled.  (There isn't.)  It's because, as a disabled person (and a disabled woman) I am more vulnerable to maltreatment (accidental or otherwise) than able bodied people.

I live keenly aware that my fixed income is all I have to live on, month to month.  I hold my breath and hope that I can get what I need in terms of adaptive equipment, because even with sufficient insurance, there are bumps in the road, and the process can take much longer than it should.  So I hope that, in the meantime, nothing breaks.  I rely on family, friends, and taxis for transportation.  And while my family has been great, and is so dependable when they are in town, they aren't always in town.  When that's the case, I am at the mercy of taxis that take an hour and a half to arrive, because it was specified that one of the passengers was in a wheelchair.

Having CP isn't always easy, and I don't want to paint an unrealistic picture on this blog.  I am proud of who I am (and that includes being disabled) but part of that identity means there are aspects of my life that are difficult, and where, a lot of my insecurities stem from.

CP isn't always easy.  Me and my sis, recovering from major surgery at age 10