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 tired...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."

Tuesday, November 18, 2014

Stuck In Neutral

Today, I saw a post recommending a book called Stuck in Neutral by Terry Trueman. So, I did some checking.  It's a pretty universally well-received book.  About a 14-year-old main character with Cerebral Palsy, who's convinced that his dad wants to kill him, to spare him from the "hardship" of his life.

The author himself has a son with CP.  And he wrote a book about a son who is afraid he wants to kill him.  

This is a book meant for children, ten years old and up.  Which, via the description, addresses complex issues of "euthanasia" (which is not euthanasia when it involves a child, because a child cannot legally consent.)  This is a book about a child, afraid that he will be killed by his own father.  Written by a father of a child with similarly severe CP.

I have never read this book, but just the idea of it chilled me.  I hate knowing that it's being read as part of English classes, and being taught to children.  These children come away thinking they know what it's like to have CP because of a book like this - a book not written by a person with it, but by the father of someone with it.

I don't even know what more to say.  I just needed to vent.

Thursday, November 13, 2014

Where to Find Disabled Dolls (and other toys for disabled kids)

I was just reading a post online about how much someone wanted a disabled doll when they were growing up.  I can relate to that sentiment, and I often had to get creative with my dolls, as a child, to replicate disabilities.

The Pattycake Doll Company has a small collection of multicultural dolls and toys for kids with disabilities, including:

- dolls with Down Syndrome
- adaptive equipment for dolls (wheelchairs, a walker, crutches and a guide dog)
- other toys for kids with disabilities
- dolls that fit in toy wheelchairs and walkers
- animated and musical toys
- anatomically correct toys (to teach good and bad touch)
- learn to dress and activity dolls
- Sesame Street and familiar character dolls

There's also a great Roundup of Dolls with Disabilities at Thingamababy.com, which includes some of the above multicultural dolls and includes:

- dolls with prostheses
- dolls undergoing chemotherapy
- dolls going to physical therapy
- dolls with hearing aids
- dolls with a cane and seeing eye dog
- dolls with braces and Canadian crutches
- dolls with wheelchairs
- dolls with walkers
- dolls with protective helmets
- more dolls with Down Syndrome

American Girl Dolls also embrace disability and difference with wheelchairs and hearing aids (and more.)


Wednesday, November 12, 2014

I Will Never Understand

I will never understand how blog posts like When a Cashier Reminded Me My Son Has Down Syndrome garner such a universally positive response.  All I see when I read the cashier's ableist remark is the mother's horrifying reply (which I will not post here because it's too awful) in front of her 2-year-old child no less.  And then?  The ableism of this cashier and people like her is excused by the mother who says "It's not their fault.  They just don't know."

We cannot think it's okay to speak the way this mother did, in front of her child or not, in jest or not.  Because disabled children are being killed by their parents.  In 2014.  Just within the last month, I have learned about five recently murdered children (Olivia, Ben and Max ClarenceNancy Fitzmaurice and earlier this month London McCabe.)

Why is this mother being praised for making such a horrifying remark?  For "using her wit" as she claims to have done?  Why are so many oblivious to the harm posts like these are causing?

Saturday, November 8, 2014

Question: Language to Use in Reference to Physical and Cognitive Disabilities

This is a layered question because there are so many types of disabilities.  (And so many personal preferences from disabled people.)  However, I can help with the language I am fairly sure of, and share my own opinion as a disabled person myself.

Words to Use:
- disabled
- physically disabled
- intellectually disabled
- autistic (not "person with autism" or "has autism")
- little people/little person

When in doubt, you can generally use "has _____" and insert the specific name of the disability you are referring to.

Feel free to ask me any specific questions you have (in the interest of not saying problematic things.)

Thursday, November 6, 2014

Dr. Drew on Call: London McCabe

"A desperation that this mom had in terms of the overwhelming responsibility of caring for two disabled people in her family." - Dr. Judy Ho, psychologist

"I think this was, actually, a kind, devoted mother who was trying her best to deal with these mounting stressors between her husband and her son.  She was reaching out." - Erica America, psychotherapist.

"The stress of what she was going through could have made her so desperate to get rid of something she could no longer take care of...and that's her son." - Dr. Judy Ho, psychologist

I only managed to catch the last four minutes of the segment of Dr. Drew on Call.  I did not know it was possible to feel so offended in so short a time.  Long story short?  From what I could gather, the segment centered around the mother (who killed her autistic son by throwing him off a bridge Monday) and how we should all feel sympathy for her.  I didn't hear London's name mentioned in the final minutes of the program.  In fact, there was very little reference to him at all.

Except in extremely dehumanizing and damaging ways.  He was identified as "an overwhelming responsibility," "a stressor" and, most disturbing "something she could no longer take care of."  London McCabe, was a six year old little boy, a kindergartener,  London McCabe was a human being.

He was not an object to get rid of.  London was a human being.  His mother was not the victim here.  Whatever her problems, she was the adult.  London was a child.  And I beg to differ with the sentiment expressed on the segment that this mother was "doing her best."  A mother's best does not include killing her own child.

Dr. Drew urged the audience that one of the takeaways from this situation should be that "stigma [around mental illness] kills" but I would challenge him on that as well.  Based on everything the panel had to say, and how the mother sought help for herself, the issue was not stigma.

Stigma does not kill.  Ableism kills.

Tuesday, November 4, 2014

Advice: Response to Child's Question About Sibling's Disability

Use age appropriate and positive language.  I would stick to something simple, as you have been.  "Everyone is different," but stress also that being disabled is not wrong or bad.  It just means her baby brother will do some things in a different way.  Then talk about all the ways she and her brother are the same. Show her positive examples of disability from TV shows.  Daniel Tiger's Neighborhood has a great episode, appropriate for her age:




There's also this lovely song by a little girl on Sesame Street, where she sings about her wheelchair:


Basically, it's super important that she understand that there are lots of kids and babies out there who have all kinds of disabilities, and that is totally okay.  That kids and babies have lots of things to help them like wheelchairs and braces and crutches, and glasses so they can play and be happy just like she can.  Hope this helps!

Another Precious Life Taken: London McCabe

Six-year-old London McCabe, who was Autistic, was thrown off a bridge in Oregon by his mother.

Such terrible news.  I grieve for this child and so many other disabled kids who have been killed by their own parents or caregivers.

Heard Whilst Disabled

#heardwhilstdisabled is another discussion going on (primarily on Twitter) where disabled people are going public with the kinds of comments we hear too often.  Thought I'd add some of the things I have heard.  Check out the Twitter hashtag for more.

- "It's a shame she's in a wheelchair!  She's so pretty!" (said to my sister about me)

- "You're so brave!"  (when I'm seen in a public place)

- "You're doing great!" (walking in my own apartment building)

- "You know you won't be able to earn ribbons on Track and Field Day like all the other kids, don't you?  But you can earn red, yellow, or blue stickers!"

- "You're an ishy retard!"

- "God is going to heal you!"

- "Don't you want to be healed?"

- "God has already healed you.  Your lack of faith is the reason it has not come to pass." (after having my crutches taken and walking back and forth with a pastor who kept trying to let go of my hands.)

- "I'm so glad you'll be able to walk, just like everyone else!" (written in a Get Well card in 5th grade after I had surgery for my CP.  It didn't make me walk like everyone else.)

- "Can you walk at all?  Not even if I hold your hands?"

- "I just love watching you!  You're so inspirational!"

- "Can I pray for your legs?"

- "I refuse to stand with you under the lies you're believing." (because PTSD is apparently a lie.)

- "Yeah, you run, cripple!"

- "Why can't you just push it across the floor?" (when I asked for help carrying my plate to the table.

- "It's funny!" (to intentionally trigger my startle reflex)

- "Well, we're in a rush tonight, so we're just going to run out quickly with the other kids to do Christmas shopping."

- "There!  Just the top part of you!  No crutches or anything!  It's better that way, isn't it?" (being videotaped as a child)

- "She's so cute!"

- "Make way for the princess!"

- "As the disabled person, you have the ability and decision to decide how to approach situations. Angry or able to put things into perspective. Able to decide when someone is being invasive as opposed to curious. Approach this type of recurring situation with some intelligence and dignity rather than coming across like some sort of angry disabled person." (about able-bodied people feeling entitled to ask invasive questions of disabled people.)

- "She goes so slow!"

- "You have more of a right than anyone else to be here."

- "We don't have a place for you here.  The only place available is under the bleachers."

- "If you just try, maybe you can walk!"

- "Half the kids on this team.  Half the kids on this team.  ...You can be the scorekeeper."

- "I was going to call you to come and hang out this weekend, but we were jumping on the trampoline and I didn't want you to feel left out."

- "I feel so bad for you."

- "She has a DISEASE!"

- "Hurry up.  I hate having to wait for you."

- "We don't have room for your wheelchair."

- "You have to work twice as hard as everyone else to get a job."

- "You should take your wheelchair when you go in for an application.  It makes you look more competent than when you walk with your crutches."

- "Hey, Wheels!  How are you?"

- "Are you in a race?  Did I miss the Indianapolis 500?"

- "She can TALK?"

Friday, October 31, 2014

My Thoughts on The Amazing Race 25 episode 6

So, Bethany continues to prove me wrong every single time I am remotely nervous for her.  This episode was no exception with her taking on the super high, rickety bridge, the zip-lining, and the puzzle,  Incredible balance and adaptability at its finest, from the confidence she showed on that bridge to her taking off her shoes for the puzzle.

And they maintained!  Still 2nd place, halfway through the race!

Thursday, October 30, 2014

Question: Language to Use in Reference to Deaf Main Character

Just wanted to say good luck for NaNoWriMo this year!!! I'm doing it as well (can't wait to start it) and I hope that you will smash it! Can I add you on the NaNo website as a writing buddy? I've also got a question that i hope you can help me with. My main character is deaf and I was wondering if you could give me tips on language to use and not use when writing a disabled character as the last thing I want to do is offend anyone. Good luck and I look forward to seeing how you do!

I'm so excited for you!  I've done NaNoWriMo for 10 years and it's always been so great and it's that much more fun when you have lots of people in your corner.  (I think I found you on the NaNo site.  I'm finishing my 2012 novel, We Are Who We Were, so you can check that for confirmation.)

First, I hesitate to identify Deaf people as disabled because Deaf people have their own culture.  They have their own language.  It's a larger issue than just positive or negative language, I think.  I'm wondering why your main character is Deaf.  Not what happened to make them Deaf but why you, as the author are featuring a main character from a culture you don't understand.  I'm not Deaf myself, and I don't know enough about it to be a great resource, in this instance.  

I can tell you, generally, that if you are using the character's Deafness to make them seem pitiable, inspirational or bitter solely because they're Deaf, don't do that.  Deafness (I'd gather) is as integral a part of Deaf peoples' identities as being physically disabled is for me.  So, the character's Deafness should not be the only thing about them, and likewise, you shouldn't ignore it either.  Your character needs to be rooted in an authentic voice.

I'll end with this scene, which I've always thought was really effective at demonstrating the difference between how Deaf people view themselves, and how hearing people view Deaf people.  (Marlee Matlin, who plays the teacher, is a Deaf actress.  You can also search Sean Berdy, who is another Deaf actor.)  My biggest piece of advice?  Research (YouTube, post on the NaNoWriMo forums), and talk to Deaf people.  They'll tell you what you want to know.

On Nancy Fitzmaurice

Earlier this month, I wrote about my feelings regarding a UK mother who admitted to killing her three disabled kids but would not face a murder trial.  Now?  Headlines are talking about a 12-year-old girl, whose mother fought for the legal right to withdraw food and fluids, thereby ending her daughter's life.  The mother was granted that right by a High Court judge.  So, though Nancy Fitzmaurice was not terminally ill, was not on life support, and could not consent being a minor child there is now legal precedent in the UK for the killing of disabled children, rather than finding ways to treat inadequate pain management.

This is absolutely chilling, and so is the way Nancy Fitzmaurice's death is being covered in the press.  Again, all the sympathy and mercy is going to this mother, who described her in her last weeks as "no longer my daughter" and "just a shell."

For more a more comprehensive look at why this is entirely disturbing, please read ASAN Statement on the Killing of Nancy Fitzmaurice.

Question: Representation of Disability in the Media

I have to make a presentation about representation of disability in the media and was wondering if any of my lovely followers who have a disability - mental or physical - could send me a quick message about how you feel regarding how the media portrays it?? It can be specific to your disability or more general, but it would be really helpful :) thanks!!

First, check out Tonia's Big List of Resources for Learning About Disabilities for examples of positive media representation.  

As far as negative media representation, I'd say Glee.  I'm a Glee fan, but their disability representation is really awful.  The one disabled character who has been there from the beginning is portrayed by an able-bodied actor, the character is constantly lamenting his lack of "normalcy."  He used to be completely excluded from musical numbers.  And he's often the butt of "jokes" that are supposed to be funny, but in no way are.  He gets called dehumanizing names by the staff (and refers to himself in those terms.)  And he has dream sequences at least once a season where he can get up out of his chair and start dancing.  He has completely unrealistic ideas about his injury and recovery, and just wallows in self-pity all the time.  His character has a spinal cord injury and uses a wheelchair.  (I have Cerebral Palsy, and use a wheelchair.)

Another one would have been the remake of Ironside from 2013.  Another character with a spinal cord injury who  was portrayed by an able-bodied actor, angry all the time at his injury, and he didn't use a wheelchair the way wheelchair users do.  He used it the way able-bodied people would.  It just seemed awkward.

The thing you come away with watching TV with an eye toward representation of people with physical disabilities is that we rarely, if ever, actually see ourselves in these roles.  (Or in other words, able bodied actors are cast to play the parts of characters with physical disabilities.)  Not only that, but we also deal with whatever the writers' prejudices are toward people with disabilities being perpetuated on screen, because there's no one to speak against them.  There's no one to tell them, people in wheelchairs don't sit like this, or move like this, or refer to themselves as muppets.  If they get discriminated against, in terms of school and accessibility, that's a violation of the ADA and you can't fix it with a bake sale.  At the very least, that character's parents should have come to school and stood up for their kid.

Also, I've almost never read a book with a disabled protagonist.  Most of the books I see written with disabled main characters are written by able-bodied authors, so they, too, are missing an authentic voice.  Or we are meant to sympathize with an able-bodied character's journey, as they "have to" work at a camp for disabled kids.  We're told her prejudices are okay because they're "real" or because the author has a kid with a disability.

Feel free to check out my representation matters tag for more on this!  And if you have any more questions, please let me know!

Friday, October 24, 2014

My Thoughts on The Amazing Race 25 episode 5

Loving this week's show!  Bethany and Adam were a fabulous team.  I really liked seeing her take on the Roadblock.  I was kind of nervous about the biking, but she did fine.  What I loved the most was actually how meticulous they were on the Tea Time Challenge.  They were the only team I saw who practiced their approach before going for it.  I liked that Bethany asked if her body position was okay before they did it for real.  And I loved how they didn't hesitate to take their time.

It paid off, too!  Hooray 2nd place!

Monday, October 20, 2014

Question: Does Anyone Have Links to Explain Why "Disabled for a Day" Campaigns are Really Problematic?

Does anyone...have any links to some of the writing that explains why “disabled for a day” campaigns (like, the ones that blindfold sighted people, or put mobility-abled people in wheelchairs, to “see what it’s like”) are really problematic? They’re doing one of these “days” at my school, and I could write something myself but, 1) I feel like their hearts are in the right place and what I need is a way to diplomatically explain the issues, and I am by nature more polemic than diplomatic and 2) I have a lot of work right now, and a polite email with links/quotes to the student disability awareness committee that is putting this together (which I do not believe contains any wheelchair users) is the level of extra work I can really take on.
I’d like something that emphasizes the issues with using a pity model, and why putting an abled person in a wheelchair validates the “wheelchair-bound,” “there but for the grace of God” mindset that doesn’t really tell anything about the lived experience of people who actually achieve mobility and independence through the use of wheelchairs, but in fact assigns negative connotations to both the abled person and the person who would probably benefit from using a chair but sees it as the dire end-fate worst-case scenario.


Friday, October 17, 2014

My Thoughts on The Amazing Race 25 episode 4

Happy that Bethany and Adam are departing in second place.  (I'm not so happy at Brooke talking about parking in a "handyman" spot.  Really?)

This wedding cake challenge is rough.  But I like seeing them try it in different ways before deciding to switch to the other task.  So far, not so good.  Or "gnarly" as Bethany says.  Always better to keep a cool head, though.  They've fallen a bit behind, but they still have the Express Pass I think, that they could use if they needed to.

And...they finished in 7th...  Wow, this was a rough one for everybody.

Thursday, October 16, 2014

Question: Lennie from Of Mice and Men

today and english we were discussing of mice and men and my teacher kept referring to lennie as “having mental retardation” and she kept saying it that way and it really bothered me for the rest of the class, considering that i am disabled myself (cerebral palsy), not mentally only physically but it still hits home.
so my question is, is that the correct, non - offensive way to phrase that or is there a better way? just for future reference.

The R-word is widely viewed as offensive, you're right about that.  Today, most people say developmentally or intellectually disabled.  

No Murder Trial For Mother Who Killed Three Disabled Kids: on Olivia, Ben and Max Clarence

I have been reeling since I read the news story yesterday of a UK mother who murdered her three disabled children in April.  The way the story was being covered was horrifying enough, and today, I see this headline.

I've read several stories this year alone about disabled people being murdered - most are children.  It's disturbing enough that little children (4, and two 3-year-olds, in this case) were murdered at all.  But the way the story has been covered, and people in the journalism field's reactions have been horrifying.

There is no sympathy for these children.  Their mother, though?  She's labeled as tragic.  Put across as some kind of martyr for ending her childrens' suffering.  The word murder, when attributed to the children is often put in single quotations, as if that is not exactly what was done to these precious kids.  One person even tweeted, in the aftermath, and dared talk about what "strength" and "courage" the mother had to "euthanise" her children.

Is it or is it not 2014?

I was just reading today about how it's difficult to find any record of disabled history.  Why?  Because disabled people were regularly killed prior to the 1900s.  In World War II, an estimated 300,000 of us were the first to be singled out - to be gassed or starved (according to this article.)

The thing that gets me the most upset is that, of all these headlines (and I rarely see them on TV or mainstream media, they are something I stumble upon and keep looking until I realize just how pervasive this really is) is the fact that, like this case and this mother?  Charges are dropped.

Do we value disabled life?  I'm talking on a basic, human level.

I've seen news stories over the years about parents who have killed their children.  Their able-bodied children.  The reaction then is horror and shock.  The reaction is "those poor babies" not "that poor mother or father."  There's nobody who sides with the parent responsible for taking the life of their child and says because that child was hard to take care of, what they did was understandable.

But with disabled kids, and adults who cannot live on their own, it happens all the time.

I read a list today, of disabled people who have been killed in ways similar to these three precious kids.  The spanned 20 years and had the names of over 100 disabled people - again mostly children - who were victims of filicide.  I recognized one name, because I happened upon an article detailing what happened to him (no murder charges there either.)  One name out of more than a hundred lives, all of which were taken within my lifetime.

It's staggering.  It's jaw-dropping.  It hurts in a way I can't explain.  But not talking about it is not helping.  And I've come to realize that if I want something to change, I have to be willing to go there.  I have to be willing to talk about it.  I can do at least that much.

These three little ones and the hundreds and thousands more deserve at least that much.

You mattered.  All who are named, and all who are not.  You mattered then and you matter still.

Having CP and Being a Twin


It's been a while since I've posted a Throwback Thursday photo and story here.  

This is my sis and me, age six, after the Twins won the World Series in October of 1987.  We LOVED anything Twins-related.  The ball team (in name only - we were never big sports fans.)  The "Twin" Cities.  I felt all of it had to do with us, because we were twins.

This is another photo where I was photographed without my walker or crutches (before I had a wheelchair.)  I think part of my desire to have my picture taken apart from these things was related to me being a twin.  In my mind, twins were exactly the same.  And my sis and I are identical twins, which made me even more convinced that we had to be alike in everything.

While we heard about and read accounts of twins switching places, we could never do that believably.  Even if my sis pretended to use my walker, I always had to hold onto something nearby, which gave away which twin I was.

All that said, I like this picture.  Even though I'm holding onto a chair, our similarities are evident.  Not only in our clothing and jewelry, but our body language and posture.  I love that both of us are standing with the same hip cocked.

Why am I talking about being a twin on my disability blog?  Because I think being a twin has a lot to do with the way I view myself and my disability and the way I viewed myself growing up.  Being a twin drew my attention constantly to equality and fairness.  Too often, I was only satisfied when both of us were given the exact same gifts at birthdays.  If my sister got the same gift but in a different color, for example, I'd instantly feel slighted, and I'd be lying if I didn't say I think it had to do with my having more severe CP than my sister.  People would always spot our differences first.  Because of that, we could never "really" be twins.  It made me extra sensitive to any other differences between us, even as innocent and innocuous as Tara getting something red while I got yellow, or her getting purple while I got pink.  Didn't matter that I liked pink or yellow more anyway.  At that point, I hated being different from my sister...probably because I always felt different enough on a daily basis.

I've evolved since then.  By nine years old, I started asking for my own specific birthday gifts along with the similar ones.   In middle school I began to become comfortable having my hair cut in a different style and dressing differently for school.  I'd like to think that helped me start to accept my disability, but that has taken a lot longer to do.  

I know for sure, though, that I can't imagine my life without being a twin...and I can't imagine it without a disability.

Saturday, October 11, 2014

My Thoughts on The Amazing Race 25 episode 3

There was not as much Bethany in this episode (there hasn't really been a ton of focus on her so far.)  However, I kind of like that.  That she's not given undo focus just because of her circumstance.  

Things that leaped out at me:

When she asked Adam "How can I help you?" on the Roadblock/Detour and then instantly came up with a way to assist, by laying out the blocks.  I love that they worked together to get their pony where it needed to go.  And the sheep-herding was really interesting, because it was a real test of calm.  I love seeing them work together, and that there's never a focus on what Bethany can't do, but always on adapting and figuring out what she CAN do.

And I also got a good laugh when they came in second, and Bethany asked if they could go swimming but Phil told her that "the Puffin says the water's a little cold."

Saturday, October 4, 2014

Making Halloween Fun and Inclusive for Kids with Disabilities

It's October and you know what that means...Halloween is just around the corner.  Here are some tips for an inclusive, fun Halloween for kids with disabilities.

Pumpkin Carving:
- When it's time to carve the pumpkin, help your child scrape out the pulp of the pumpkin, if they want to.  Give them a chance to feel it.  They may not like it.  If not, that's okay.  But keep in mind that they may love it.  Different sensory experiences are awesome for kids with disabilities.  

- If carving pumpkins for your kids is too daunting, and if you just don't want to risk those sharp carving implements around your kiddos, get some finger paint and let them paint their pumpkins.  I still remember doing this as a very young child, and it was so much fun.  (No scraping the insides was necessary either!)

Costumes:
- Take cues from your child.  What do they want to be this Halloween?

- Keep in mind, costumes that fit over their heads and are easy to get on and off work best. You can also do a lot with capes, makeup, hats and masks.

- Halloween costumes were always one of the highlights of Halloween for me.  This was my favorite ever costume.  I went as a robot when I was seven years old.  (The robot was pictured on the front and back of my costume.)  I got a cool, gold mask, and my pigtails doubled as antennae.  It was awesome because my walker really added to the effect of the costume and didn't take away from it.



Check out some of the great Halloween Costumes for Kids in Wheelchairs that are out there today!

There are also a couple of suggestions for Halloween Costumes for Kids with Walkers and Crutches.

Trick-or-Treating:
- If you are going Trick-or-Treating around your neighborhood to places that are not accessible, make sure you provide access for your child.  My parents were great at helping me get right up to the doors, even if there were steps.  Be prepared to lift or carry.

- Instead of walking long distances, take the car or van.  It will help your child stay warm, and save their energy.

- Trick or treat somewhere accessible to your child.  (An apartment building that's all one level or has an elevator, or your local elementary school or place of worship that may be handing out candy.)  That way everybody can have fun together!

Friday, October 3, 2014

My Thoughts on The Amazing Race 25 episodes 1 and 2

Are you watching Amazing Race tonight? I skimmed your disability blog to see if you'd posted a reaction to the first episode, but didn't see one.

LOVE seeing Bethany competing on The Amazing Race!  There hasn't been a lot of focus on her, but in a way, I think that's a good thing.  With so many teams, it makes sense to have less time to focus on each individual team.  

Last week, I don't remember much of my reaction, other than just how unnecessarily nervous I felt for her.  She did fine.  She and Adam were in the lead and finished solidly in the middle of the pack.

This week, they made the tasks look so easy, I actually went back and rewatched their turns to see how they navigated after all the other teams seemed to struggle.  I agree with what Bethany said about how her adaptability could give her an edge in the competition.  And from what I've seen?  Lots of her experience as a surfer (with balance and calm) has served her well, too.  And I was so happy they went for the Express Pass (and found it!)  Not only is it a smart move competitively, but also, as Bethany said, if they come up against a task she can't do, it will be invaluable.

Really excited to see how well they do!

Friday, September 26, 2014

New Gloves

For  the first time since high school, I've got new wheelchair gloves!  (Really, biking gloves, but they serve the same purpose.)  I'd seen a post about the good quality of these gloves in particular, and I love how padded the palms are.  Fellow manual chair users who use biking gloves for a bit of protection - seriously check these out.  Affordable, good quality and true to size.  Find them here.



Advice: Carrying Money While Shopping

Hello, just me, with yet another question. :) Since I need my hands free to push my chair or walker, what's a safe way to carry my money in public, other than a fanny pack or my bra (I hated touching boob or sock money as a cashier). I don't want to put any valuables on the back of my chair either. I've been just asking whoever I'm shopping with to hold my wallet, but I might go out alone sometime. Thanks in advance for any advice!


Great question!  I can only share what's worked for me and that's this purse.  It's small, lightweight and has a long, adjustable strap.  I've made the strap as short as possible, and when I go out in my chair, I wear this around my neck and one shoulder, so it's very close to my body.  (If you want an extra layer of security, you can always buckle it in with you.)  The biggest part of the purse snaps closed, which is where I keep my larger items (parking sticker), I keep the most important stuff in the zipped pocket and loose change in the very front tiny pocket.  (For reference, I believe this one was found at Kohl's.)

As a general note, if you're out alone, I would recommend taking your chair whenever possible if you need to handle money, because that can leave your hands free in a way a walker (or crutches) won't.

Hope this helps!  (And I always love questions!)