Saturday, December 31, 2016

Great Disability Blog Posts of 2016 (Part 4)

Part 1 / Part 2 / Part 3

Today's round of posts is pretty special more than half the posts are written by kids.  Rhema, Ellie (first time on this list for her!) and Fox.  We also have another great post by K, and a first post by my friend and fellow blogger, Ellen!

Love, Rhema by Rhema at Rhemashope

Talk to us like normal so we feel important
We may not respond with our timely voices
but still know that we hear you and think you are lovely to speak to us
So much of talking happens inside with autistic people
so we dont try to engage like others
but we want to so much
So try to remember this too
Strong to make others stomach the uncomfortable
but we are thankful when you do your best - Rhema

Rhema's mom, Jeneil, shares some favorite quotes spelled out by her daughter, Rhema, this year.  So much insight from this bright girl on a variety of subjects.

[Image is: a blonde woman smiling and doing push ups across from a brown haired girl with her chin on the ground.  If these two aren't inspirational for exercising why restrict a disabled child to being just an inspiration when they are fully human.  Read Ellen's post below for more on this.]


My Child Is a Person, Not Just an Inspiration by Ellen at Ellen Stumbo

My child is a person and her purpose is not to be a message to the world about acceptance, to be a teacher about what matters in life, or an inspiration for doing the same things other people do that are sometimes perceived as incredible accomplishments. Yes, she might do those things from time to time, but that is not her purpose.


When I limit another person to be only a message, or a lesson, or an inspiration, I take away their relatability, their humanity, and suddenly they are not a person like you and me. - Ellen

Ellen shares an important message via this blog post about how damaging it is for kids with disabilities to be viewed through a singular lens, instead of being viewed as whole people.

My Sister Has Down Syndrome and It's Okay With Me by Ellie at Ellen Stumbo

If Nichole was not my sister, I would probably stare at her and wish she was. - Ellie

Ellen's oldest daughter, Ellie, writes a beautifully respectful post about her youngest sister, Nichole.  Just ten years old at the time of this writing, Ellie makes it clear that it is completely possible to write about people with disabilities as multi-dimensional, without falling into pity or a limiting perspective.  One of the highlights of my year to read, for sure,

MY RIGHT FOOT by K at Transcending CP

I didn't tell her this: that there are some stains that never come out in the wash. Some stains are permanent. I never forgot her pointing, her laughing. It's amazing, sometimes, how much words can hurt. How a single sentence can leave us feeling so alone. - K

K shares about such a common occurrence for those of us with CP: an insecurity with showing the part of us most affected by CP.  I've almost never worn shorts as an adult.  Capri pants either.  Only full length pants.  I rarely go barefoot.  Needless to say, I related so much to this post.  And if you feel alone in being insecure about a part of your body, read this.  You won't regret it.

Nicely Autistic by Fox at Fox Talks With Letters

 I AM BEING ABLE TO DECIDE MY OWN LIFE. HAPPY I CAN TALK. - Fox

Fox spells a fantastic poem about his new ability to make choices and how that is helping him to accept himself.  Like Fox, I write poetry to cope, and so I can relate to him a lot in this way.  He has a great way with words.

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Did you read these posts?  Did you learn anything you didn't know before?  If so, what?  If you liked the blog posts, be sure to follow the links to let Rhema, Ellen, Ellie, K and/or Fox know you enjoyed their work.


Top 5 Posts of 2016

It's the end of another year and time to see what you guys thought were the most helpful, or interesting, or just plain popular posts of 2016.  It's always interesting to see which posts wind up being more widely read and which are not.  Hang out for a bit and see if your favorite made the list:

[Image is: Clocks counting down the hours until 2017]


5.  High School Gym Class With a Side of Ableism

Sometimes, I share stories that are just that, stories.  Memories I have of significant experiences in my life with CP.  Back in April, I shared about one such experience in high school gym class, when we tackled the ominous but brief rock climbing unit.

Cerebral Palsy means that anything that anything physical involves a good deal of both pre planning and motor planning.  Having never climbed a wall before, I had no previous experience to serve as a map for just how to make my way up.

4.  Let's Talk About Speechless 1x01 "P-I-PILOT"

I really enjoyed recapping the first episode of Speechless.  I connected with JJ's character and really loved several of the scenes, which closely mirrored my own life.  One, in particular, where JJ's classmates give him a standing ovation for entering the room.

(Think this is over the top?  I once had a teacher who said, "Make way for the princess!" whenever I entered her class.)  JJ's teacher instantly freaks out when he realizes that (oh my gosh!) JJ can't stand up!  "THE STANDING OVATION IS INSENSITIVE!" he screams and all the kids sit down.  (Do I have an example for this?  You bet.  High school Humanities, our zany teacher has all of us stand up to pretend to be archaic statues.  Her eyes fall on me, still in my desk, and she says with a look of discomfort and mild alarm says, "Tonia, you don't have to.") 

3. Dear Parents Whose Baby Has Just Been Diagnosed With CP

Last year, I wrote a Letter to My Younger Self, and this year, I really wanted to write one to parents whose baby has just been diagnosed with CP.  I read a lot of parent blogs, and a baby or child's diagnosis seems like it is universally difficult for parents.  I wanted to assure parents that we are okay:

CP does not make your baby one-dimensional, or a monster.  CP is not a punishment because you did something or didn't do something.  Sometimes, things just happen.  Your baby is still your baby, and your baby needs you.  They need your love and your acceptance.  So, hold them.  Read to them.  Talk to them.  Bond with them.  Your baby will feel secure with you, and you will feel even closer to you baby.

2.  Let's Talk About the Effects of Consistent Patronization

Something I thought a lot about this year was how being consistently patronized by important adults in my life has shaped me as an adult.  Like with most realizations that feel "big", I had a hunch that others might know this feeling that I struggled to even describe with words:

...The lines between a genuine compliment on my actual ability and one that gushed because I did common things had grown blurry.  So when a teacher praised my work legitimately, I panicked, because I didn't want something I had put my heart into to be read as the token inspirational piece in the [middle school newspaper].

1.  Let's Talk About the Gap Between Disabled Adults and Parents of Kids with Disabilities

Tonia Says serves a dual purpose: first and foremost to let others with CP know they are not alone.  Also, though, it exists to attempt to bridge a massive gap that exists between disabled adults and the parents of kids with disabilities.  As we are coming from opposite experiences, it's often difficult to see each others points of view.  For a long time, I wondered why the gap existed, and this quote, by my friend (and fellow blogger) Ellen Stumbo, really explains things brilliantly:

"You guys are the first generation raised out of institutions.  Before that, parents always spoke for you.  We had to.  There was no other choice.  Now, though, you've grown up, and you speak for yourselves.  You're the first to ever do that.  I don't think we, as parents, are used to it yet."

Friday, December 30, 2016

Great Disability Blog Posts of 2016 (Part 3)

It's time for the third round of Great Disability Blog posts.  If you missed the first two, part one is here and part two is here.  Today we have more posts by K, Vilissa and Mary Evelyn:

I Spoke. People Listened. by K at Transcending CP

This is such a triumphant, lovely post written by K, about the first time she spoke publicly about CP.  This was a huge milestone and I loved reading about how blogging helped her find her voice.

[Image is: a microphone, because I like to think that by doing a post like this, our voices, and voices of people who respect and support us will be amplified.]


If I Die in Police Custody… by Vilissa at Ramp Your Voice!

Vilissa leaves a stunning, sobering and deeply personal set of final instructions in the event that she were ever killed by law enforcement.  A horrifying possibility, and even moreso, for her, and all those who must think about these possibilities, because they are, in fact, their realities.

IF YOU GIVE A MOUSE AN ACCESSIBLE PLAYGROUND. by Mary Evelyn at What Do You Do Dear?

Mary Evelyn shares what a difference an accessible playground makes for her son.  She vividly shares how playing at an inaccessible playground does not feel much like playing at all.  But how playing somewhere where it was accessible made all the difference in the world.  As usual, a funny, respectful take on this issue.

Letter to Pope Francis: My Disability Is Not for You to Objectify by Vilissa at Ramp Your Voice!

A strong and respectful letter to the Pope about his comments in April about how "people with disabilities are gifts to their families."  Vilissa shares, unapologetically that her family should love her regardless of how God made her and that she is the disabled one, not them.  I absolutely adore her candor.

Little Known Black History Fact: Elizabeth Suggs, Early 20th Century Author with Brittle Bones Disorder by Vilissa at Ramp Your Voice!

Part of being disabled means much of our history is happening right now.  Our civil rights movement is in its toddlerhood.  Because disabled people historically were institutionalized, it is so rare to find information about a disabled woman from the early 20th century, especially a Black disabled woman.  I loved so much learning all about Elizabeth Suggs courtesy of Vilissa's blog post.  It makes me feel like we do have a history after all.


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Did you read these posts?  Which ones resonated with you most and why?  Let me know in the comments - or better yet - let K, Vilissa and Mary Evelyn know, by leaving them a comment.

Thursday, December 29, 2016

Great Disability Blog Posts of 2016 (Part 2)

Great Disability Blog Posts of 2016: Part 1

Time for Part 2 of Great Disability Blog Posts.  I really enjoyed sharing yesterday's - if you missed it, click the link above.  Today, we have more from Fox and Vilissa plus a powerful post by mother and daughter, Jeneil and Rhema, an important post by Kathleen, and one by Mary Evelyn that I come back to time and time again:

Feelings Hard To Control by Fox at Fox Talks With Letters

Fox shares about feeling sad and afraid about racism after the 2016 presidential election in the US.  He's not the first child to feel this way.  Fox does a great job explaining the difference between the kind of fear he likes (SCARY HALLOWEEN AND SCARY ROLLERCOASTERS) and his fear of racism which, he spells, FEELS DIFFERENT and TOO HARD TO UNDERSTAND.

[Image is: a mother and daughter both in white tops and black skirts, in honor of fabulous mother and daughter blogging team, Jeneil and Rhema.  Read their post below.]


Hard Conversation by Jeneil and Rhema at Rhemashope

I UNDERSTAND THAT I AM LOVED BY YOU BUT SOMETIMES I FEEL SO MAD AT YOU BECAUSE YOU BELITTLE ME - Rhema

A powerful conversation between mother and daughter that I have thought of many times, since I read this post in August.  If you would like to learn about presuming competence.  About how ableism hurts.  About how to apologize for it and go forward with your child and make different choices than the ones that hurt her, read this post.  It's so, so important.

How “Lemonade” Empowered Me As A Black Disabled Woman by Vilissa at Ramp Your Voice!

I was shocked to see model Winnie Harlow make a cameo appearance in “Lemonade” as one of the many young women featured in the “Hope” chapter.  Winnie has Vitiligo, and her scenes were close ups of her face, which displayed her beauty and innate strength.  Black disabled women are rarely featured in musical performances, and to see one of us look so elegant and portrayed in an empowering regard made my heart swell with pride.  Winnie represented a form of Blackness that is ignored in our community – the Black disabled body.  Seeing Winnie’s appearance made me believe that I too have the “freedom” BeyoncĂ© sung about, and to know that my version of Blackness and Black womanhood mattered immensely. - Vilissa

I Can't, In Fact, "Do Anything I Set My Mind To" (And That's OK) by Kathleen at The Squeaky Wheelchair

The word “can’t” is important. The word “can’t” has power. The word “can’t” belongs to you. As a disabled person, this realization has not left me defeated, but instead, free to focus on that which I can do. Free to shape my life and my goals according to my needs. Free to accept that it is not necessary to be able “to do anything” so long as I am proud of the “something” I can do. Rejecting the notion that “I can do anything” has not irreparably damaged my self –esteem or trapped me in a pit of self-loathing. It has given me the tools to lead a happier life. - Kathleen

I DON’T KNOW HOW TO TALK ABOUT HEALING. by Mary Evelyn at What Do You Do Dear?

A powerfully resonant and respectful take on what it's like to be the mom of a disabled child in church on Sunday when the subject of healing comes up.  Mary Evelyn's post, in a way, inspired me to explore my own journey of faith as a disabled woman (which you can find in my series, Let's Talk About Faith.)  Mary Evelyn opened up such a necessary conversation with this post, and I know I'm super grateful for it, and for her.

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Which one of these posts resonated with you the most, and why?  Share in the comments!  (And don't forget to comment to Fox, Jeneil and Rhema, Vilissa, Kathleen and Mary Evelyn if you liked their posts, too!)


Wednesday, December 28, 2016

Great Disability Blog Posts of 2016 (Part 1)

There have been a lot of amazing posts on disability this year.  And because there are just so many, I want to share them with you a bit at a time.  It's my hope that you'll find new blogs to follow, and new perspectives to consider:

A Grocery Store Trip by Fox at Fox Talks With Letters

Fox shares about a trip to the grocery store where a man made a rude comment to him about his accommodations.  Fox so vividly describes his need for this particular accommodation and why the man's comment so hurt him.  His mom told him what mine often told me: a variation of "don't let him get to you," as this is "not a regular thing." As Fox puts it: BUT STARES ARE REGULAR.  Long after you have forgotten the comment made in the grocery store, the little boy you made it about is still thinking about it.  For a brilliant firsthand account of a child experiencing ableism, please read this.

[Image is: the HARD TERRIBLE GROCERY STORE, as Fox describes it in his post.]


a question by Jess at A Diary of a Mom

Jess makes a compelling point about privacy for autistic kids on the internet.  Curious about what I mean?  Check out the post.  You won't regret it.


K does an outstanding job in this post at explaining just how difficult it is to be spontaneous with CP (and how difficult it is to multitask!)  If you've got CP, or if a loved one does, check this out.  You'll either come away knowing you're not alone, or with a greater understanding of why a walk in the park ISN'T a walk in the park when you have CP.

Being a Black Disabled Woman Is An Act of Defiance: Remembering #KorrynGaines by Vilissa at Ramp Your Voice!

Vilissa is, as always, a strong voice for the Black Disabled community.  She boldly shares about how being a Black disabled woman is an act of defiance and what that means, exactly.  Her voice is much needed.  If you have not read her blog yet, check it out.

#DisabilityTooWhite: Making the “Good Trouble” in Advocacy by Vilissa at Ramp Your Voice!

The hashtag itself is very in-your-face, and that is how I want it to be remembered – there is no question what it is about, and the discussion that is to follow.  I, like so many, are tired of the “tip-toeing” around sensitive matters in our communities and advocacy to protect or coddle the feelings of those who will be most resistant in trying to effect change that will empower us all. - Vilissa

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Which one of these posts resonated with you the most, and why?  Share in the comments!  (And don't forget to comment to Fox, Jess, K and Vilissa if you liked their posts, too!)

Wednesday, December 7, 2016

Video: How and When to Talk to Your Kids About Their Disability


If you are a parent of a child with a disability and are wondering how and when to talk about it with your child, check out this episode of The Unexceptional Moms podcast.  My sister, Tara, and I joined hosts Ellen Stumbo and Erin Lorraine to answer this great question.

If you have a disability, how and when were you told about it?  Is disability discussed in your family?  If you are a parent, what have you told your child or children about theirs?  Will you do anything differently now that you have seen the podcast?

Monday, December 5, 2016

10 Things About The Holidays and Me (and CP)

1.  I love making out Christmas cards in early December, with holiday music playing (haven't gotten there yet this year...oops!)

2.  Snow is so pretty...but my CP does not love it.  It makes a lot of things harder.  Like walking, keeping my balance and flexibility.

3.  I love candy canes.

4.  Family time is the best.

5. Christmas movie I must watch every year?  A Christmas Story.

6.  Favorite random gift?  Christmas cookies!

7.  We have two Christmas trees, and only one ornament: Big Bird.  He is the star of any tree.

8.  My favorite Christmas song is O Holy Night.

9.  My favorite person to sing Christmas songs with?  Definitely my cousin.  If you are close to me, you know which one I mean, and you know why... :)

10.  My favorite decorations are:

[Image is: Santa on the far left, dressed all cozily for winter, Christmas Cheer in the middle (a glass jar of red, green and gold jingle bells decorated with a white ribbon.  Far right is a close up of the tag on the Christmas Cheer: At a time when we should feel the most blessed The holidays can make us feel quite stressed.  When you feel the "crabbies" coming near, Sprinkle yourself with Christmas Cheer!!! (Sprinkle on others as needed)]
What are your favorite (or least favorite) things about the holidays?

Monday, November 28, 2016

Lessons Learned From My Community

I have not always felt a part of the disability community.  (This is strange to say, especially given that I have a twin sister who also has CP.)  Particularly, when I was younger, I found it hard to connect with other kids like me.  Early on, as a kindergartener, I had exactly one friend who was like me.  Then there was a long void until I was a teenager.  Then an even longer void until my 30's when I truly began to find "my people."  I wanted to share some lessons I have learned from friends in the disability community:

1.  Support For Each Other Is Vital:

From the time we were very little, my sister and I had the shared experience of having CP together. Having someone by my side who knows what it's like was crucial, whether I was a baby or a 10-year-old about to have my casts removed.  Having each other reduced isolation and anxiety during and after big events like surgeries.  Just having her there during those tough times, and knowing she understood, made a world of difference.

[Image is: Me, age 10, lying on a table about to have my casts removed.  Tara is seated near my head, holding my hand.  We are smiling.]
2.  Our Lives Have Purpose:

I was thirteen and at summer camp for the first time when I met a girl who would quickly become my best friend.  I don't remember the context of the conversation, but I do remember her telling me that "I believe I was put on this earth for a purpose and I'm going to serve it."  Those are powerful words at any age, but hearing them as a teenager was especially important.  The idea that people with disabilities had purpose was new, and life-changing for me.

3.  Our Words Have Power:

That same week, all the girls in my cabin were camping out in a tent.  One of them was going on about how much she loved someone or another.  I said, "You're hopeless...  I meant it in the way people say, "You're a hopeless romantic."  Lightly.  But being thirteen, I didn't deliver the expression right, and the result was instant.  We went from just having fun to the conversation stopping cold as she demanded, "Who said I was hopeless?  I am not hopeless."  I sheepishly admitted it was me.   It was the first time I remember genuinely taking responsibility for something I'd said that hurt someone.  I apologized: "I didn't mean it that way.  I'm sorry."

4.  We Need Role Models:

When Tara and I were babies, we were regular 2-pound trailblazers.  According to our aunt, the hospital where we were had never saved babies our size....until they saved us.  We were the first.  There were no adults with CP when we were growing up because they either had not survived infancy or (more likely) they were institutionalized, which was still common practice when we were born.  That said, the chance to be a role model for kids in college, for teenagers, even for kids with CP has been pretty incredible.  I know it would have been beyond powerful to see an adult with CP who was happy and fulfilled when I was growing up.  A role model with CP can mean the difference between a child hating their disability and realizing they are not alone.

5. We Need Friends With Shared Experiences

This final lesson echoes the first.  One of the most difficult parts of being disabled was being surrounded by people who weren't like me, and feeling like the only one.  It has been so validating to be able to connect with friends who have disabilities, or parents of kids with disabilities.  When we talk, there is an ease I haven't experienced nearly enough in my life.  We just connect.  We don't have to try or search for things to talk about.  We are not left feeling inferior because our hobbies are not active ones.  We are just with our people.  Enough as we are.

What lessons have you learned from your community?

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Don't forget to connect on Facebook


Monday, November 21, 2016

Let's Talk About Speechless 1x07 "T-H-A-THANKSGIVING"

Hey, guys, I'm back this week.  (Thanks, to Tara for guest posting last week!)  If you missed the announcement on my Facebook page on Halloween, I have spent this month fully dedicated to National Novel Writing Month.  Novel #13 is more involved - and longer - than any of my others have ever been.  I've reached the word count goal and hope to finish the story itself in December.

Looking forward to spending Thanksgiving with my family this week, and that being said, we need to talk a little about Speechless last week:

[Image is: a cartoon turkey looking startled]
Jimmy's brother, Billy, and his family are coming to town for Thanksgiving.  They have an array of annoying habits - a cousin who says one annoying catch phrase, Billy who brags about money constantly.  But under the umbrella of "annoying habits" is also the ableism by JJ's aunt and grandmother.  (His aunt cries and tells the family how "brave" they are, and talks to JJ like he can't hear.)  Grandma dances inappropriately for him, heedless of JJ's discomfort.

Maya decides to make a game out of the family's annoying quirks.  Each takes a family member (while Ray abstains, cooking with Kenneth in the kitchen to avoid family drama) and they are awarded points whenever their family member does the annoying thing they hate most.  It turns out that Billy (a dentist) is struggling financially, and the heavy-handed "lesson" of the episode is that "everyone struggles."

JJ was not really in the episode much, except to be danced for by Grandma.  He pretends he likes it this year, so that he can get more points in the family game.  But truth time?  All I could think of was a member of the disabled community who recently shared they were the unwilling recipient of a lap dance, and the whole thing got treated as a joke, even when they reported it.  I think this walks a dangerous line.

In the end, in order to recoup money he has lost, Billy trots JJ out for one of his commercials as honest to God inspiration porn.  So that Billy's audience can see that he is "real" and has a "real disabled nephew."

So, yeah, not the best episode for me.  But I am glad to be back!

What did you think of Speechless last week?  Let me know in the comments?

Monday, November 14, 2016

Let's Talk About Speechless 1x06 'D-A-T-E--DATE" (A Guest Post by Tara)

Hi everyone!  I’m Tonia’s sister, Tara.  She was so kind as to allow me to review last week’s episode of Speechless, “"D-a-t-e-Date?"

[Image is: Several red hearts with black outlines floating in the air]


Overall, I have really been enjoying this series.  And this episode was no exception.  

This week, JJ meets an injured gymnast.  He immediately notices and disapproves of her red parking placard, signifying her temporary disability.  Kenneth urges JJ to give the girl a chance as he is simultaneously implored by a teacher to show his fellow disabled student around.  At this point in the show, I’ll admit, I was cringing.  (And JJ was too!)  The whole “disabled people only date/marry other disabled people” trope is super tired.  That said, the storyline played out fairly well.  JJ ends up getting to know Gymnast Girl while confronting his own insecurities, and the episode ended with him asking her to watch a movie with him.  She accepts genuinely.  

I was super happy to see JJ with a personal storyline this week, instead of a storyline that focused solely on accessibility like we’ve seen in the past.  However, I will say that the therapy scene tread on some thin ice as far as inspiration porn.  

We see Gymnast Girl stand for the first time, after being encouraged and inspired by JJ.  

Do disabled people draw strength from each other?  Absolutely.  The scene does have merit.  However, as Gymnast Girl is essentially an injured able-bodied person, having her draw inspiration from JJ - a permanently disabled character - just feels a little gross.

Other highlights?  

Dylan gets in trouble at school for destroying a participation trophy.  I enjoyed seeing Jimmy guide her through appropriate coping strategies.  (I would love to see JJ and Jimmy bond at some point - have we seen this yet?)


What did you think of last week’s episode?  Sound off in the comments!  

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Connect with Tara here


Monday, November 7, 2016

Let's Talk About Absentee Voting

It was a toss-up determining what was better news that day: that the heat in our building was turned on, or that we got our absentee ballots in the mail.

Recently, a friend asked: Honest question, is there a benefit to absentee voting?

Since we have lived in accessible housing, we have voted three times.  The first time, back in 2008, Tara and I bundled up against the chilly Midwestern November and walked/rolled to our polling place.  The line was long and afterward, we had to brave the cold again just to get home.  In 2012, walking was not an option, so we asked our dad for a ride.  He dropped us at a local church this time where we waited....and waited....and waited...and finally voted and had to call him again to give us a ride back.

This year was the first where absentee voting did not require a reason, and so Tara and I jumped at the chance to go online and fill out the basic information required.  A week later the ballots arrived, along with serious instructions and three envelopes.  We voted.  We were witnesses for each other, and the next day Tara dropped them off at our local post office on her way to work.

Today, I checked the status of my ballot, and saw this:

[Image is: a screen shot which reads ABSENTEE BALLOT STATUS  You have applied for an absentee ballot or you are a registered voter in a mail ballot precinct for the November 8, 2016 State General Election.  November 8, 2016, State General Election:  Your ballot was accepted on October 17, 2016 and will be counted.] 

Sending in my absentee ballot just made sense.  It saved our energy and it saved our family a couple of car trips to drop us off and pick us up. I think it's a pretty great option, and really makes the voting process easier.

This year's vote is super important.  If you are unsure where you stand, I recommend this quiz, which really helped me clarify my position.

Have you sent in your absentee ballot?  Will you be at your local polling place tomorrow? Will this be your first time voting in a presidential election?  Let me know in the comments.

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Don't forget to connect on Facebook

Monday, October 31, 2016

Let's Talk About Speechless 1x05 H-A-L--HALLOWEEN

This week, on Speechless, Dad, Jimmy, reveals his one true talent: designing family costumes around JJ's wheelchair.

[Image is: Lovely orange pumpkins.]
Though I had a wheelchair by the Halloween I was 8, I never used it to trick-or-treat.  I always used my walker instead.  And though I had great costumes, my favorite was a rather simple robot costume, because I felt that my walker added to it, rather than detracted from it.  So I would have been all about any costume that integrated my adaptive equipment, but I never really got to explore that.

The last year I ever trick-or-treated, I was only 10 years old.  Where I lived, the infamous 1991 Halloween blizzard was already dumping snow on my home state but my sister, my brothers and I all still wanted to trick-or-treat.  We wore winter gear over our costumes, and my dad carried me to every house.  (Thanks, Dad!)  

Needless to say, I can't exactly relate to the notion of family Halloween costumes that seamlessly incorporate a wheelchair.  Definitely by the time I was the age of the DiMeo kids, Halloween traditions were long past (and no wonder!  All that trudging through a blizzard carrying a 10-year-old!)  So I was right with them when they made their own plans for the night rather than dressing up in Jimmy's family costume of the year.

JJ wants to go to a party with friends, and basically invites himself over.  (Sometimes, you have to be proactive!)  His friends say of course he can come, they just weren't sure if he would be able to.  He and Kenneth arrive (I'm honestly not sure how JJ gets into the house) and JJ asks for beer.  Kenneth is sure he has misspelled "soda" but JJ insists.  Finally, he starts asking Kenneth for random things, and asking the kids at the party to give him beer in the moments Kenneth is not around.  He gets drunk and ends up "slurring his words" as he tries to spell.

Maya and Jimmy punish him (for the first time!)  JJ laughs as he is lectured and Maya is relived that "at least he's a happy drunk!"  Ray and Dylan (whose Halloween plans have also gone awry) need help from Mom and Dad respectively, and then lament the fact that it's Halloween and they haven't had any candy.  Jimmy says he knows where they can get some, and they dress up in their family Back to the Future costumes (with Kenneth as Stevie Wonder) and try trick-or-treating at 1:45 AM.  (I guess JJ's grounding does not officially start until the following day, as he is magically well enough to happily drive the DeLorean costume into the night...)

I liked how this episode showed that JJ is a typical teenager.  I really liked how he used his laser pointer to get at Ray when he was angry, and also to get the attention of kids at the party.  (You use what you've got!")  All in all, a pretty strong episode!

Did you watch the Halloween episode of Speechless?  What did you think?

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Monday, October 24, 2016

Why a Drawing of a Line of Kids Stopped Me In My Tracks

It was a typical Thursday and Tara's turn to write to our young friend, who has CP just like us.  Because she's often in a rush to get out the door and go to work, I tell her I'll get the letter in an envelope, addressed, stamped and mailed, just leave it on the table.

So, I read the letter (because we alternate writing, both of us like to be aware of what's already been said so we don't repeat ourselves.)  It was a cute little anecdote about how all the kids were to be off school that day, and how busy my sis imagined her day to be because all the kids would be hungry and bored.  I told Tara I thought it was cute, including the drawing at the bottom, which depicted a stressed-out looking Tara womaning the register, and a long line of children, who are waiting to pay for their goodies.

It was after she left for work that I studied the picture more carefully, and saw that in a line of seven kids, one used a wheelchair and another used a walker.  Both carried their money independently.  Both kids were smiling.

[Image is: Tara's drawing at the bottom of her letter: depicting the above-described line of 7 kids.  One says, "Can I have pizza?" while another says, "I want an Icee."]

I loved the picture so much, I asked her if I could blog about it and share it.  So, with her permission, I am.  Why?  Because representation of people with disabilities is rarely so seamless.  So thought-of, so respectful.  I love it.  I love it because it shows we are a part of the bigger community.  It shows we are happy.  It shows we are independent.  It even shows my sis (with invisible disabilities herself) doing a job.

It's rare and it's awesome, and I'm sharing it because I think you might think it's awesome, too.

Do you?  Let me know in the comments...

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Monday, October 17, 2016

CP Survival Guide

With winter coming, CP related issues (spasticity, spasticity-related pain, slipping, etc) are at an all-time high.  My sis, Tara (who tweets @TaraJean) came up with the idea for a CP Survival Guide, especially handy for the winter months.  I eagerly jumped in to help and so did our friend K, (who blogs at Transcending CP.)  So, if you have CP, or you have a loved one with CP, check out these recommendations:

Note #1:  These recommendations are not to be taken as medical advice.  We are not doctors.

Note #2:  This is not a sponsored post.

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OILS & OINTMENTS ETC.



Lavender oil (recommended by Tara)

This is one oil we dilute ourselves to use. You can pretty much use any carrier oil to dilute (though you do not HAVE to dilute lavender oil - we choose to as our skin is sensitive). We use olive oil simply because it's cheap. Fill glass bottle with carrier oil, then add several drops of lavender oil. Shake to combine.

To use, spray on tight or painful muscles. Rub in. (Also helps with anxiety!)

Lavender essential oil: $7.85 on Amazon
Olive oil: $4.89 at Target
Glass spray bottles (12-pack): $11.99 on Amazon

(You can do the same with eucalyptus oil, which helps with spasticity.)

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Pain Relief and De-Stress oils (recommended by Tara)

These oils come ready-to-use in cute little rollers. Pain Relief smells light and citrusy, while De-Stress is more herbaceous and almost grassy. These are spendy, but an 8 ml bottle will last for months.

To use, roll on tight or painful muscles.

Pain Relief: $29 at 21drops.com
De-Stress: $29 at 21drops.com

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Mentholatum (recommended by Tara)

If you only take one thing away from this post, know that Mentholatum is miraculous. This ointment is good for everything from relieving intense spasticity to clearing sinuses and sinus headaches! Smells like eucalyptus and menthol.

To use, coat tight or painful muscles liberally.

Mentholatum (1.76 oz): $4.99 at Target

***BONUS: Use all of these things together for maximum relief!***

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Absorbine (or Absorbine Jr.) Back Patch (recommended by me.)

This is particularly helpful for when your spasticity is so bad it is painful.  (Used mostly in winter, but also when tread wears off your shoes and you have pain as a result.)  It says BACK patch, but it is useful on painful heel cords and pelvis in addition to back.  It has a very strong smell (a bit anesthetic + menthol.)  This is helpful because it's a combination of menthol AND gentle heat that lasts consistently for up to 8 hours per patch.  Usually not more than one is needed to resolve a pain issue.

To use: Open package.  Remove patch.  Carefully remove plastic film from adhesive side.  Stick to (unbroken/unburned) skin.  (May want to shave first, depending on if it needs to go on a leg.)  Peel off after 8 hours, whichever way feels most natural, least painful.

Absorbine (or Absorbine Jr.) Back Patch  $1/each at our local dollar store.

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Heated Massager (recommended by K)

My mom actually bought this to relieve back pain, but I found that it works amazingly well to ease tightness in my legs as well...so we have both fallen in love with it. :) I just place it on top of my legs or behind my knees and let it work its magic. I've never been much of a massage person in the past, but my legs feel so much looser after a few minutes of using this. (Side note: foam rollers and muscle roller sticks are also great at easing spasticity!) 

Available on Amazon for $39.99

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Blister Band-Aids (recommended by K)

These were a saving grace for me all throughout college! My CP gait means that I'm prone to developing blisters on my feet, and once I discovered these squishy band-aids, I couldn't live without them. Just apply them over the blister and they provide cushioning that prevents further irritation and helps guard the wound from extra pressure. They might seem a little pricey, but in my experience, they're totally worth it, and they're fairly water resistant, so they stay on even after you've taken a couple of showers. 

$4.29 for a pack of 6 band-aids at Target

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SOCKS & SHOES ETC.



Dr. Scholl's Diabetic & Circulatory Socks (recommended by me)

SO GOOD for cold weather and for NOT waking up with intense spasticity.  Got consistently cold feet and legs?  These babies are SO soft and comfortable, and are knee-length.  Not too thick.  Do not get wet after a day in shoes.

$9.99 for a 2-pack at Target

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Legwarmers (recommended by me)

It's hard to keep your legs warm, especially as the weather starts getting colder.  Legwarmers like these add an extra layer of warmth (great to keep spastic heel cords happy.)

$9.99 at Target

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Adjust A Heel Lift (recommended by Tara)

For those with leg length discrepancies - these lifts are each 1/2 inch thick but layers can be peeled off as needed if you need less of a correction. I wear a size 8 woman's shoe, and the medium size lifts are perfect and fit in most sneaker-style shoes.

Warwick Enterprises Adjust A Lift Heel Lift, Medium (Pack of 4) - $19.45 on Amazon (Size Medium)

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Skechers for Work Women's 76536 Sure Track Slip-Resistant Shoe (recommended by me)

Part of keeping intense spasticity in check is having a good pair of shoes.  The most important feature when you have CP is good tread.  That's why slip-resistant shoes are the best.  (Even better if you can find a pair that is also supportive and lightweight.)  Feel free to include your favorite shoe options here,

Around $69 at Amazon

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KEEN Women's Presidio Shoes (recommended by Tara)

These are super comfy, true to size and supportive and they come in so many colors! (Rare for CP shoes!) While not certified slip-resistant, I do not slip in these shoes except on wet floors.

Available on Amazon from $43.42 - $115.00. (Or at the KEEN website for $110)

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I've had awesome luck with Clarks shoes, and these boots are no exception! I bought a pair in my freshman year of college and couldn't be happier with them. They are very supportive (and I usually do up the laces snugly for even more support), really comfy, and they have excellent traction for icy and snowy days. I can't even count the number of times these boots have stopped me from falling flat on my face. I love how they look, too. :) As an added bonus, since they're waterproof, they can double as rain boots too (I still haven't found CP friendly rain boots, but these worked well for that purpose!). 

In terms of durability, these lasted me about a year and a half of heavy use (i.e., wearing them most days whenever it was snowy, icy, or rainy) before I wore a hole in the right toe, which is usually where my shoes break down first. My CP gait is really rough on shoes, so I was really impressed by how long they lasted, and I immediately replaced them with the exact same pair! ;) 

Available lots of places (Google them!) but the cheapest I saw was QVC.com, $99.98 + $5 S&H

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CLOTHING & BAGS ETC.


IZ clothes (Wheelchair clothing) (recommended by me)

This collection is fantastic, especially if you are in a wheelchair and have CP.  I have worn their shirts (so comfy) and their jeans (which I am wearing in the picture above) are AMAZING.  All their clothes are designed specifically to hang nicely on seated people.  

Clothing comes in Men's, Women's and Ungendered.

*While the main sections are quite spendy, I recommend going to the sale section and browsing there.  Living on a budget, clothing there is much more affordable.

**NOTE:  IZ is sadly going out of business.  As of now 12/16, they are doing some big sales, so if you want to ensure you get some of their amazing clothes check them out while you still can!

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Bell Breeze 300 1/2 Fingered Biking Gloves (recommended by me)

In high school, I asked for wheelchair gloves for Christmas.  I don't remember where I got the idea, but my parents got me a pair of blue biking gloves that protected my hands from wheel burn going down steep hills and the giant ramp at school.  When I wore through that pair, I got another, but after high school, the wheelchair glove need fell by the wayside, but the truth is I forgot how necessary they are and how much they help.  These are not bulky, you can feel your rim but you can also spare your hands blisters and friction burn with a simple pair of gloves like these.

Available at Amazon: I think these were maybe $10.

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Sojourner Bags Woven, Fabric Fanny Packs (recommended by me)

These fanny packs are amazing!  Found by chance while looking for a birthday gift for a friend with CP, we ended up getting our own, we were so impressed.  Though it does not look like it, these fanny packs are durable and super spacious.  They can accommodate awkwardly shaped things like accessible parking stickers, wheelchair gloves and so much more.  Fanny packs like these are great alternatives to purses or unwieldy bags, which can throw off our balance, and can allow for independence in being able to carry your own money and personal items.  We have given them as gifts several times over by now, and they are well-received by people with mobility issues due to age or disability.

Available for $18.99 each with Amazon Prime.

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Quilted Knapsack (recommended by K)

This knapsack has been a lifesaver for me! Purses are difficult for me to keep on my shoulder and I like to keep both hands free whenever possible for balance. I bring this quilted knapsack/backpack along whenever I go out with my friends, and I've also used it for work and trips to my college dining hall. It has a magnetic button closure, a drawstring tie, and several pockets and zippered pouches so that I can securely carry my wallet, a water bottle, and whatever else I need when I'm out and about.

Several of my (able-bodied!) friends have gotten a knapsack of their own after seeing how handy mine has been. :) The brand of this particular knapsack is Tinsley Blake, but I don't think it's in production anymore (I found it at a thrift store for $5 many years ago). However, I've seen many similar quilted knapsacks that work just as well (Vera Bradley knapsacks are nearly identical to this one, but I know there are lots of less expensive alternatives too!). 

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EQUIPMENT:



Fetterman Tornado Rain Tips (recommended by me)

These crutch tips have been lifesavers, as my crutches originally came with very ordinary crutch tips that did not do much to prevent slipping.  These not only make me feel more secure when walking but they also rotate with your movement so they are easier on your shoulders.  I tried the plain Fetterman tips and quickly upgraded to the rain tips because of the added security.

Available on Amazon for $49.95

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Folding Shopping Cart (VersaCart) (recommended by Tara)

Do you struggle to carry grocery bags, or laundry from place to place?  The VersaCart not only provides plenty of room for multiple grocery bags (or a giant laundry bag + detergent) it is water resistant, and has a cover to ensure your items will not get wet.  Instead of having your balance thrown off by large bags, the VersaCart allows you a place to store them AND stability to help you keep your balance. Easily assembled, collapsible and lightweight!

Available at Amazon for $69.95

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I didn't always have a shower chair.  Before I knew such things existed, I made due without them.  In college, I found a simple bench (no back, and insufficient slip-proof "feet").  I found this particular shower chair about 10 years ago, and it is perfect for me.  It's sturdy,  It doesn't move unless I move it myself.  I has handles built into the seat, and also a back rest, which I NEED in the shower.  It's everything I need in a shower chair.  I never worry while I am using it.  I always feel secure, which is pretty amazing, for someone with balance issues in a slippery environment.

Available at Amazon Prime for $44.76

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Thursday, October 13, 2016

Let's Talk About Speechless 1x04: I-N-S--INSPIRATIONS

This week on Speechless, JJ and Kenneth go out on the premise that JJ will be able to go out and do things he chooses.  Without him, Jimmy, Maya, Ray and Dylan go paint-balling and enjoy themselves tremendously.  Meanwhile, JJ and Kenneth begin to accomplish everything on JJ's list: getting hot dogs in LA, for one:

[Image is: a long hot dog on a bun with lots of ketchup and mustard]
While in line for a hot dog, an elderly woman comments that they should not have to wait in line and waves them to the front.  Another couple offer to pay for their hot dogs because of how "inspirational" they are together. Thus begins Kenneth's quest to take advantage of as many disability perks as he can.  JJ enjoys getting free admittance to a baseball game, and choice seats, and throwing out the first pitch.  (He also demands the player's glove.)  After all these things, JJ prefers to just enjoy the game, but Kenneth is up singing Take Me Out to the Ballgame to the fans.

Kenneth has more plans and ignores JJ when he says "enough."  Not only that, but Kenneth takes JJ's letterboard off his chair for no discernible reason (other than perhaps he does not want to hear that JJ doesn't want to keep getting random freebies.)  Kenneth puts the board in a backpack and leaves the bag in the parking lot before driving away.

JJ is rightfully angry and Kenneth figures out belatedly that JJ's board is missing.  They find it and JJ tells Kenneth "You took my voice.  You don't get to do that."  Kenneth promises to never do it again and then lets him drive the van around an empty parking lot.

I was so beyond disappointed in this.  First, because it's supposed to be JJ's day.  It's supposed to be about what JJ wants.  JJ wanted hot dogs from LA.  JJ wanted to see a baseball game.  Instead, the episode turned into what Kenneth wanted and left JJ to teach him a lesson and then be allowed to do something totally dangerous to make up for it.  It's a disservice to JJ but also to Kenneth.  It seemed vastly irresponsible and out of character for Kenneth to do something as disrespectful as this.

And I don't know about anyone else but watching the DiMeo's have fun without JJ spoke to every single moment I was hospitalized as a child and was sure that in our absence, my family was off having a great time without me.  I understand that JJ was supposedly having fun, too, and it was funny to watch, in moments.  The more I watch of the show, though, the more convinced I become that it's not for me.  It was clearly made for able-bodied people, by able-bodied people.  I'll keep watching because I want to support actors like Micah getting work and representing characters with CP on TV, but I'm going to watch the show without the hope I once held out for it.

Did you watch the episode this week?  Share your thoughts below!

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Monday, October 10, 2016

There Is Nothing Romantic About the Chase (And Other College Tales)

This past weekend, I talked to my youngest brother.  He's in college right now, and I assured him that if he was ever feeling overwhelmed, he might feel better knowing some of my college adventures.

After two years at a local community college, Tara and I moved an hour from home to go to a larger university.  By the time I'd been there for five months, it was old hat, but I was having some unexpected problems.

Namely, the disabled guys on campus.  (I was the only girl who used a wheelchair that I remember, and there were at least two or three of them.)  Being young, and naive, I saw one guy - around my parents' age -  sitting outside of one of the campus buildings one day and decided to say hello.  We chatted a bit and I continued inside for a bite to eat.

Needless to say, that was the wrong thing to do.  From then on, every time I went to that building, that guy was there.  He'd smile and say hi.  I'd say hi.  It was fine, at first.

On Valentine's Day, he approached me while I was eating.  "These are for you," he said, indicating something on his tray.

I glanced down.  A small box of four chocolates.  I was never one to turn down chocolate, but this was starting to feel a little weird.

"Happy Valentine's Day."

[Image is: a bigger version of the box of chocolates I was presented with that day.]


"Um...thank you.  You really didn't have to do that."

I glanced at Tara.

"Tom," she said, trying to lighten the mood.  "Where's my candy?"

"This isn't for you.  It's only for her," he said definitively.  He turned his attention back to me and waited.

"That's really sweet.  Thank you," I said, hoping he would leave.

When he did, I thought that was the end of it.

A week later, when I was alone, he approached me again, with something else:

"This is a picture of me before my accident."

Whoa.

"Yeah...I see that."  I answered, feeling more and more uncomfortable.  This was getting way too deep for me.

He obviously thinks we're more than friends...

"I never show anybody this but I want you to have it."  He pushed the picture toward me.

"Listen...  That's really nice of you, but it's not right for me to have this.  You said it's really important to you.  You need to keep it."

"Oh.  Okay."

A long and awkward silence fell until he filled it again.

"I was wondering...do you wanna go out to eat sometime?  Or we could go see a movie together?"

Oh God...

"I'm actually not looking for a relationship right now."

"Just a movie sometime?  No one goes with me," he said.

"I have a lot going on with school.  I'm sorry, I really can't."

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That night, as most nights, I stayed up late doing homework and talking to Tara.  At one point, I made some popcorn, which meant I had to move the dish from in front of the microwave.  I set it on my pillow (not a lot of surface space in the dorm...)

Hours later, it was bedtime and I moved the dish back, before launching myself full-force into bed.  Oblivious to the fork that still lay on my pillow, my shoulder landed on its handle, and jackknifed the tines up as I brought my head down to rest on my pillow.  I felt a sharp pain just below my eye.

Perfect.  Tom would not leave me alone and now, I had accidentally stabbed myself in the face with a fork.

What else could go wrong?

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Well, Tom decided to initiate the chase.

I'd never experienced this phenomenon the way it usually plays out: a guy pursuing a girl who is saying no (because they are convinced that she doesn't know what she wants, and really means yes, I would love to date you.)  I especially had never experienced the chase quite like this:

Tom started cruising up to me as fast as his power chair would take him (a bit like someone speed-walking up to you, it feels very intense.)  I'd say hi.  He'd laugh and block me, as I tried to manually maneuver around him.  "I really have to go," I'd say and attempt to pass him.

He stayed firmly in my path, a smile on his face.

This sounds funny, but if an able-bodied guy did the same thing: followed a girl around campus and refused to let her pass him every time they interacted?  That wouldn't be funny.  That would be stalking.

Needless to say, if you are feeling stressed about school, perhaps these stories will bring a smile to your face.  When you're overloaded with schoolwork, just remember:

At least you aren't being relentlessly pursued by a creepy 40-year-old or accidentally stabbing yourself in the face.

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