Sunday, December 28, 2014

#TheShortBus Flashblog: A Positive Experience

I rode the short bus my entire school life, and while I was keenly aware of an otherness - a sense of being different and separate - the experience in and of itself was not a negative one.  In fact, I still recall the faces of some of the drivers, aides and fellow passengers with fondness.

I remember Charlie, who drove the bus in when I was in second grade, and who was so concerned when my sis fell out of her seat into the aisle, thanks to a seat belt that was too loose.  I remember Bob, the aide on the bus I rode in fourth grade, who never minded when my sis and I sang songs from Disney movies the entire ride to school.

I remember riding the bus with Steven, who licked the windows, especially on cold days.  Chris, who was our neighbor at one time.  John and Braxton, and Kristen and Latisha and Eddie.  I remember really liking Brian, who was so nice and had such an engaging personality.  They all had various disabilities.  In high school, we shared the bus with three teenage mothers and their babies.  They made the bus ride extra adorable.  Still have lovely memories of riding the bus with those babies and their moms.

Ironically, I remember having more trouble riding a mainstream bus than I ever did on a short bus.  During one field trip when I was in fourth grade, I was told I couldn't go on the trip unless they could install a seat belt in one seat or get a short bus to take me (and a couple other kids, so I wouldn't feel ostracized.)  I remember being nine years old, and thinking, "Why does my safety matter more than my classmates'?  If I have to wear a seat belt on the bus, why don't they?"  On the short bus, no one made fun of me, even when we sang"Part of Your World" and any other Disney song I liked.  I loved riding the lift on and off the bus.  I loved that my bus stopped right in front of my house.  It was always so positive for me.

Though I was teased occasionally, in school, it was never about riding the short bus.

It was safe, because all of us were different.  We all knew how it felt to stick out because of something we had no control over, so none of us ever made life hard for anyone else.  Even the kids who had emotional difficulties.  Even the older kids.  We treated each other kindly because we knew the world was not as gentle as we needed it to be.

But we made it that way for each other, for twenty minutes or so each way.

I like to think it made a difference.

This was written for The Short Bus Flashblog

Question: How Did You Find Accessible Housing & What Are Other Issues You Faced When Finding an Accessible Place to Live?

If not for my mom somehow knowing about accessible housing less than five minutes from home, I feel like we would have really struggled finding housing. The building where I live (and several others like it within my state) were designed for adults with physical disabilities, and to qualify to live here, we must be low-income and disabled.  Since those two things are pretty synonymous these days, that is not a problem.

I'd say availability is a problem.  Because each building is rather small, and usually residents live here for long periods of time, it took several months for one to open up for us.  Even then, it was a one-bedroom.  It took several more years for this 2-bedroom to open up as only a fourth of the apartments are 2-bedrooms.  One is lived in by the apartment caretakers.  Also, this particular accessible housing looks like it's only within my state. 

I would have never even known where to look in the first place to know how to find accessible housing.  It's not something I've ever seen advertised - so we have helped a friend of a friend find housing after she became disabled.  It seems we (the disabled community) are all we have and we have to help each other out, and spread helpful information around.  Otherwise, we would never find it.

Tuesday, December 23, 2014

What's Wrong with the TODAY Show's I Am Unbroken Campaign

I happened to see this headline (Champion Gymnast with Down Syndrome Overcomes Obstacles, Inspires Others) today, through Facebook.  In its original, uncorrected version, it claimed that the "Champion Gymnast Overcame Down Syndrome..."  And that's just one thing that rubbed me entirely wrong about this "campaign."

This article details what TODAY's producers were looking for:

It says "all walks of life" but so far the series seems dedicated to inspiration porn about disabled people.  Chelsea Werner is a gymnast who has Down Syndrome.  Bonnie Kate Zoghbi survived a shooting and was wounded (She's 'Unbroken': TODAY Honors Woman Wounded in Aurora Theater Shooting).  In Chelsea's segment, we almost never hear from her.  We only hear from her parents and her coach.  In Bonnie Kate's segment, most of the talking is done by her husband.  I mean no disrespect to these women.  I just think it's so problematic that in a segment about them, we rarely hear from them.

Disabled people living their lives is not cause for celebration.  Being disabled does not make us "broken."  Disabled people being disabled and happy does not make us "unbroken."  Because we are not overcoming our disabilities.  We are simply living.  We have good days and bad days just like everyone else.

If living while disabled, and smiling while disabled, is cause for celebration and segments on morning shows then we have set a pretty low bar.  Celebrate Chelsea when she competes and does well.  Celebrate Bonnie Kate on her wedding day.  Don't celebrate them for existing.

Hoping that the I Am Unbroken campaign is better in its remaining days, but to be honest, I am not holding my breath.

The Little Couple: My Thoughts on episode 7x03 "First Week of School"

If I Don't Get It Fixed, I'll Most Certainly Be in a Wheelchair:  This commentary (and more) by Bill regarding his back injury made me cringe a bit, so I was glad to have seen him post this while that episode was airing:

I Don't Think Either of Our Children Are Particularly Morning People:  7 AM is early, especially when they're not used to having to get up in the morning.  Get a little breakfast in them, and they'll be perkier.  I hope.

School!  A Rabbit:  I love hearing Zoey talk more, and especially seeing her bond grow with Bill has been amazing.  It's awesome to see her so comfortable with him.

Mommy, Stop:  And I definitely love hearing Will rock his two and three word sentences on a regular basis.  He's doing so well!  (Even if he doesn't like to get his hair brushed in the morning.)

It's Good to See Him Flourish and Speak His Mind:  It really is, Jen!

One of the Things We Needed to Acquire for School was Some Step Stools:  And this is really the crux of why I love this show.  Because when disabled parents raise disabled kids, adapting is just part of daily life, and they'll acquire things the kids need prior to them encountering a situation where they might need it.  

Hey Will.  Out of the Pantry.  That's for Later/School:  And here we have Will, in some ways behaving like a typical 4-year-old, getting into the pantry for a snack before school.  I did think about how school is a new place for him and how food means security for him in a lot of ways.  If so, I think it's positive that he remedies his own insecurity that way.  While not the best to have Goldfish crackers after breakfast, it's not the worst thing either.  I'm with Jen, and wouldn't have fought him on it.

Baba!  Cookies!  School!  I was also struck by how Will (naturally) didn't just get himself a snack.  He got one for Zoey, too.  Such a considerate big brother.

What Can You Use The Step Stool For?  And here we are again with the great, positive framing of the adaptive equipment.  I love how Jen takes time to talk to the kids about what they can use the stools for.  It's not "without this, you won't be able to reach such and such" it's "You can wash your hands, and Zoey, you can use yours to climb up and see the rabbit."  They know to emphasize all the ways the stools help.  Hooray for positive framing of adaptive equipment for the kiddos!

It's Some Kind of Weird Bug/A Bug!/It's a Bug.  I Know.  Gross:  Ha!  I love this conversation between Jen and Zoey, and how Jen and Bill always converse with them about what's going on, as well as acknowledging their fears.

We're Using Simulation with the High-Tech Mannequins to Train Family Members and/or Parents or Patients How to Manage their Medical Issues at Home:  I loved this part of the episode as well, having been a premature baby with a trach once upon a time.  I love seeing Jen training families so they know how to handle an airway emergency and having the opportunity to practice that, prior to bringing a baby home.  Really good to see that Jen's training family, parents and patients themselves for emergencies like this.  It's so important to make sure families are comfortable for situations that might arise.

One of the Things, I Think, That's So Fantastic About Will's Personality is that He's So Enthusiastic About Everything:  So amazing to see Will excel in swimming lessons!  As usual, I love that the whole family is in on it, watching and supporting him.  And I definitely think, aside from it being important for all kids to know how to swim, that it's prudent that both parents recognize Will's enthusiasm around water as both a positive and something to caution him about.  He does amazingly well!  So much fun to watch!

[Zoey] Warms Up To Things, When She Feels Like It Makes Sense:  So true!  She is a little more timid, but she still listens and does a good job.  I thought it was really smart of Jen to come back and sit right alongside the pool to watch and encourage Zoey in her lesson.  That she came when Zoey cried for her is really significant and great for their bonding, too.  

Thanks for Picking Up Some Lunch/Sure Thing/Thank You, Baba:  Another thing I just love about this family:  they not only love the kids, but Jen and Bill genuinely like and respect each other, and it shows.  I've never seen them get mean and nasty to each other, and the kids pick up on that.  Jen thanked Bill for lunch, and then, so did Will.

I Wasn't 100% Sure That Zoey Would Like School, But She Seems to Be Doing a Fantastic Job:  So happy to hear this!  Good job, Zoey!

[School] is an Environment That Mimics, Probably Eerily, in Institutional-Like Setting:  I cannot articulate how much I appreciated Jen and Bill's sensitivity and reassurance to Will regarding his reluctance to be separated from them, and go to school.  Without going into too much detail, or approaching it from too much of an adult place, I loved that they took the time to reassure him that he's loved, that they are his parents and this is his home.  Also, though, that he will come home to them every day, and they will always be his family "forever and ever."

With Two Kids?  And a Pool?  Yeah.  I Need to Learn CPR:  So great to have more training for the family and that they all get trained together and have Will and Zoey there.  I love that medical things and training are seen as necessary, positive, and kind of normalized.  

Finally Our Size Works in Our Favor and We Get to All Enjoy Toys:  Aw, I love it!  They can all play in the mini-SUVs!

Monday, December 22, 2014

The News Has Been Especially Disheartening as of Late:

School Punishes Blind Child By Taking Away Cane and Replacing It With a Pool Noodle

Woman Decapitates Her 7-Year-Old Daughter With Cerebral Palsy, Says Demons Told Her To Do It

These are the kinds of things able people can do (and in most cases, not face criminal charges for) and it is absolutely terrifying.  I so badly wish there was more we could do to protect disabled children.  Reading headlines like these makes me feel so devalued and dehumanized...  It's 2014.  Something needs to change.

Wednesday, December 17, 2014

Dragon Hearted {a fairytale}

Written: 2/23/14

Author’s Note: Inspired by a post that came to my attention two months ago about fairytales where children lived in towers - about the desire for a story that addresses how life was for that child in the tower, and whether or not she really wanted to be rescued in the first place. There is no specified character. She is you. She is me. She is every girl, young and grown, trapped and free.
This is my tower. I live here. It is big and tall. I can see far away. The sky and the grass. I don’t go out because I’m safe inside. Because I don’t know the language they speak out there. In that world. Which is so very different from my world.
I have my very own dragon. She is red and purple. She breathes fire to keep me warm, and to cook my food, and to scare away monsters that come too close. I think I must be part dragon, too.
I feel dragonish inside.
Big and strong. Just like the dragon, who protects me. But when I see my face in the glass, it does not look like the dragon’s. It looks like I am different. Like we don’t match.
I feel naked without scales. Without wings. I breathe very hard, but my fire does not come. Not even any smoke. I am a creature with long hair. With skin unprotected. When I squint, my eye does not slit dangerously.
There must be something wrong with me.
But my dragon comes to me, with fruit, from the trees, squished and broken in her claws. Meat from Somewhere Else that she cooked with her fire-breath, so gently. She sets it down and pushes it toward me. She waits so patiently while I eat.
She tells me in low tones that I am enough. I am me. She is here.
She covers me with her wing and I fall asleep to her dragon sounds. To the sound of her heartbeat, which sounds like mine. She tells me, without words, that I am dragon inside my heart. Where it counts the very most.
When it is light and I wake up, I am alone. I am not afraid. Not right away. Because the air around me feels calm. After time passes, though, I realize something: It is too quiet.
I trust my dragon to take care of me, but the sounds I hear are strange and different. Hooves and clanging. Raised voices in a language I do not speak.
When a heavy thing flies through my window, I shriek. It’s not my dragon. It’s not birds or insects. It’s not lizards. It’s not alive at all. But it must be. It came through my window, and now it’s stuck in the stones.
I hear voices coming closer and closer.
I breathe deep and hold it inside, remembering when my dragon brought me a cake, like she did sometimes. With some little fires glowing. She showed me how to blow gently. Her heart told my heart to hope for something. That the hope would come true, only if I didn’t tell anyone. I remember breathing deep then. Trying so hard to add my fire to the little fires, but they went out instead.
I never told my dragon, but I wished for claws and wings. I wished to be like her.
I believe her that I am enough as I am, but without her, I am unprotected. The strange sounds are coming even closer.
Then, there is a monster climbing in my window. He is covered in mirrors so dirty I cannot see my own face in them. He reaches for me, and the dragon inside me grows.
I haven’t grown claws yet. Or wings. But my dragon told me it would happen. Maybe I have to wait longer. Even without them, I pretend I do. I claw him. I roar in the biggest voice I have. I breathe very heavy, blowing only air and spit, but hoping….so much hoping…for fire.
I don’t get fire.
I get taken.
The monster grabs me and takes me out the window. Down, down, down to the ground below and I fight. I shriek. I lift my feet off the grass which doesn’t feel green, it feels dangerous. Like the world.
I am in the world.
I am not safe.
Where is my dragon?
I am taken far away. Into a place where the sky is not blue and there is no grass. Everything is too loud. Everybody is a monster, so I fight them.
It’s a long time, before I learn the truth.
The truth that I am not a dragon at all. I am a monster like the monsters who took me.
We match.
My dragon and I? We never did.
I learn how to be a monster, because I have no choice, but I keep my dragon heart a secret. Just for me. Wherever my dragon is, she would be proud of me. I know she would.

Years pass. They call me a princess and give me a crown. The monster who took me, covered in dirty mirrors? They tell me he is my knight in shining armor. He is my prince. I am supposed to love him. To be grateful to him for saving me.
But I am not. The dragon in my heart breathes fire rebelliously. Because I miss my home. I miss my tower. I miss my dragon with every part of myself. Because he did not save me.
The monsters are called humans, and I have learned their language. But there are some words whose meanings escape me. My ears perk up at the mention of dragons, but I don’t understand the rest.
I sit quietly as I have been taught. When there is a silence, I raise my head. I resist the urge to rumble softly from my throat. To cock my head and squint my eye to indicate my curiosity. Instead, I fit my tongue and teeth around the words that still feel foreign:
"Slay?" I ask, because it’s the human way to inquire. Because they don’t understand dragon.
"Yes, my dear," the prince says and he smiles proudly. "To slay is to kill with violence. How else do you think I rescued you from the clutches of that vile beast?"
I string the words together carefully:
Kill. Dragon.
He killed my dragon?
He took me from the only home I have ever known, but only after he killed the very best dragon. The dragon who fed me, who kept me warm, who protected me, who loved me.
Tears fill my eyes, but I don’t cry. Princesses might, but dragons don’t. I am sure of it. I never saw my dragon cry.
Instead, I open my mouth, and I roar. I imagine fire coming from my mouth. Smoke from my nostrils. None comes. But nothing matters.
Because I am a dragon my heart.
That is all that matters.
Against my will, I grow. I am no longer a child in my tower. Nor am I the adolescent who had her entire world ripped apart by a revelation so insidious that it threatened to destroy.
I am a woman.
I married the prince. Because as hard as I fought, I found that my human voice will never carry as much weight with the humans, as my dragon heart did with the one who cared for me. Who raised me.
I spend my life pretending. Wearing clothing that feels restrictive and hot. A crown that feels too heavy on my head.
When we visit far off cities, so the prince can do the things princes do, little dragons flock to me, disguised as little girls. We sneak away to quiet places. I teach them everything I know about being dragonish. About protecting those smaller than you. About accepting others even when they do not look like you. About true strength. About caring. About love. I tell them that a fire lies within them. That the wings of their dreams will carry them anywhere they like. I tell them that while they are not armed with claws and scales, they have something greater:
They rumble softly, and tilt their heads in question, the way I have taught them.
"You have a voice," I tell them. "It’s here," I point to my throat. "And here," to my hands. "And here," to my feet. "It exists whenever you exert power over your own life, so that even if monsters arrive to take you away from everything, you can make the choice to fight back. Even if your monsters are bigger and stronger, it does not matter. You may have to let them take you. But, you never have to go quietly. Never stop fighting for the life you want."
All around me, the little girls’ eyes shine with wonder.
So I lean in, whispering the secret it has taken me a lifetime to learn:
"Be the dragon you were born to be."