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!