Saturday, August 30, 2014

Life in Central America

Playing under laundry baskets with a little girl in Central America.  2001.

When I was 19, I wanted nothing more than to go on a mission trip.  I was really into church, and mine was into serving in other countries, but I remember feeling hesitant.  At a previous church outing (a camping trip with my confirmation class at a previous church) I got to go, but there was a woman I didn't know who had to go as well.  Just for me.  To be sure I was okay or something.  It was strange and I felt relieved when a longtime friend helped when I needed it, naturally, and without complaint.  (Impressive for a 14 or 15 year old, which we were at the time.)

Needless to say, I didn't want a repeat of having some random person along just to watch me.  It felt weird.

The mission trips were announced.  One was going to Ukraine, another to Central America, and even more places that I can't recall now.  Long story short?  I made my decision based on the fact that the Central American children's home was run by my friend's uncle, who also used a wheelchair.

I did the work.  Got accepted for the trip.  Raised the money.  And off we went.  There was no awkward third wheel this time. When I got off the bus at the children's home, all the kids were excited to see that I was "like Mike" who they saw every day.  The kids (thanks, in part, I'm sure, to Mike) accepted my chair as quickly as they did me.  They played peek-a-boo behind it.  They pushed me and each other in it.  They took rides on my lap, and even on my foot pedals.  One little girl did ask what was wrong with my legs, and though I was familiar with Spanish, I didn't quite have a strong enough grasp to have such a conversation.  So my team leader (and Mike's niece) said: "I don't know how to explain it, but it's not a problem for her."  

The thing is, it wasn't.  It was as normal for me as it was for Mike.  And I got to spend nine tumultuous, interesting, enlightening days on a trip that affects me to this day, in positive ways.  I didn't need a third person hovering, like I had to have years earlier.

In fact, the difference was never made more clear to me than when I was cruising down the steep, unfinished sidewalk to one of the children's homes, near Mike, when my chair tipped over the edge into the grass.  Nobody freaked out.  Nobody came running.  Mike just asked over his shoulder, "You okay?"  I assured him I was, got up and kept going.

Though not always common, or possible, if you want to do something, and you're disabled, try finding someone else who is, too, who is already doing it.  That level of understanding can't be taught, or bought.  And it made my whole experience that much better.

Wednesday, August 27, 2014

Advice: Swim Class and CP

Ok so I had my first day in the pool and I was excitingly nervous. So I was looking hot (been exercising) so body game = kinda hot. so i got in the pool and i was like yay and then the teacher said walk up front, not touching the wall…and that’s when everything derailed.
My body froze up like Ii couldn’t move and I wanted to punch myself in the face. I couldn’t stand in the water. After the lesson was over, the teacher was like maybe I should try again next time because this class is too advanced and get a private tutor in the meantime ($$) but i was mentally screaming like NOOOOOOO I have been dreaming of this day for too long and my disability will not screw one over on me again. no. I’m going to go to the pool on friday and try to get over the body stiffness. Any advice is apperciated

I can't think of advice off the top of my head, but I do have questions, and maybe they'll lead you to solutions:
How was the temperature of the water?  My spasticity is worse with cold, so that could definitely have played a part in your freezing up.  I'd also suggest doing all you can to stay mentally and physically relaxed.  For me, sometimes that means consciously telling my muscles to relax.  You could try stretching beforehand, too, maybe.  
Does your swim teacher have experience teaching people with CP?  That's a pretty big leap to judgment over something you can't control.  It'd definitely work in your favor if your teacher were familiar with CP and the ways spasticity affects you.
I'm not a professional, just a fellow person with CP.  Hopefully something in this response is helpful for you.

Hi! Thank you for answering my post!I have the same problem with my cp as well. Cold water is a no go for me. The water wasn't too bad (it was a little cold) but my body got accustomed to it pretty well for the first time. I think it was somewhat of a little mental block as well since I never actually walked in water and my balance on land is not so great so my mind kind of froze. I think my teacher has had disabled people in the past, it's just i'm taking it with more able-bodied students.

Especially if it was your first time, I'd say be patient.  Don't be afraid to talk to your teacher about what you, specifically, need.  Even if it's extra time to master something while the rest move onto something else.  I have walked in pool water before, myself, in a middle school swimming unit in gym class.  And the more I think about it, the more I'm sure it happened near the end of the unit.  It definitely didn't happen the very first day. So, give yourself time, and don't give up.  If you have any more questions, let me know!  I'd love to try and help.

Monday, August 25, 2014

Advice: Sister Struggling in the Classroom

I need to vent and could use some advice. My sister, Angelina was diagnosed with epilepsy and cerebral palsy. Epilepsy is a neurological disorder where the person has seizures, which she has been able to handle with the use of multiply medications. Cerebral palsy is a combination of impaired muscle coordination and damage to the brain before or at birth. Due to her CP, she doesn’t have strength on her entire right side. When she was younger she was in physical and occupational therapy, where they tried to strengthen it. She now and for the rest of her life will wear a brace on her right leg, which helps her walk and keep her leg/foot stable. Those are just the physical effects of her cerebral palsy but mentally it’s a just as difficult.  This brain damage is the cause of her inability to ever reaching a high level of reading. Having said that, she is a very smart girl, she loves animals and has the most amazing imagination! This year she started third grade and every morning she cries and pleas with my mom, saying “don’t make me go”, “ I hate it there” and other things that break mom’s  heart. When I pick her up at the end of the day I ask her how her day ways and she just has this tired look on her face and says “good” but I know the truth. My mum comes up to me always with tears in her eyes, telling me about how the kids make fun of her, they ask why she is reading “baby books” and other  comment that aren’t meant to hurt but they do to a nine year old. For school Lina has an IEP or an individual educational plan; this means she get accommodations when in the class room such as having the directions read to her, extra time and taking her tests in a smaller classroom. Being a dyslexic myself, I know how helpful the accommodations are. Her teachers are not following her IEP. Every day she comes home with a folder filled with pages cover in red markings that I can see break my mom’s heart to look at. All I want to do is go up to her teacher and giver a peace of my mind. I really can’t take another day of my mom sobbing into the phone with my dad, as my sister cries in her room about how she’s “stupid” and “can’t do anything.” So if you have any advice i would really appreciates it! Just know I’m not doing this for reblogs/followers or whatever, I’m doing this because I hate seeing my energetic, happy, little sister so sad and depressed to wake up and go to school every day.

I'm so sorry your sister is going through that.  As someone with CP myself I often resented my own accommodations because they set me apart from my classmates.  I was already different enough and didn't want more reasons to be set apart.

First, I'd say it's your sister's teacher's responsibility to create the culture in that classroom.  The year I struggled the most, I had a really closed-minded teacher, who was oblivious to the way her special treatment hurt me.  Your parents are completely within their rights to go in and speak to your sister's teacher if something similar is going on there.  Your sister deserves to be able to enjoy school as much as possible.

And also, if there is any part of school your sister enjoys, make a big deal out of it.  Celebrate that with her.  As her sister, it may not seem like you can do much, but I bet she looks up to you.  You and your parents can help her by building her self esteem.  Encouraging her, and celebrating with her when she accomplishes a goal (big or small).  Make a point to comment on all the things she's really good at.  Is she kind?  Caring?  Helpful?  Then tell her, and tell her a lot.  Because those are the things that make good people, not the grades you get in school.  (And that's not saying that school is not important, because it definitely is) but there is more to life than academics.  

Be that encourager for your sister.  That listening ear.  Tell her all the ways she's smart.  Focus on all the things she CAN do, so that, over time, she'll be able to focus on those things, too.

Hope this helps!

Thursday, August 21, 2014

Life Before The Wheelchair

I was thinking today, "What did I ever do before I got a wheelchair?" and then I found this picture.  That's me at six (possibly seven) years old.  And that's definitely a stroller.

The thing is, though I do remember being a bit self-conscious (after all, one of my brothers, to my left, is also in a stroller at 18 months) I also remember loving it.  It was really comfortable and sturdy, and being as small as I was, it never felt like a tight fit.

I love finding pictures like this and fully realizing all the ways my family adapted for me.  (You can even see the edge of my walker hanging on the back of my little brother's stroller.)  Nowadays I don't know if a stroller would be seen as an acceptable adaptation in lieu of a wheelchair, especially for a seven-year-old, but this was the 1980s.

And being able to come with my brothers and sister and cousin and have cotton candy was all that really mattered to me.  We must have looked like a strange group: at least two adults, five kids under seven, two strollers and two wagons?  It was a regular parade.

But I remember being happy because everyone got to ride instead of walk, not just me.

Sunday, August 17, 2014

How Are Video Games Biased Against the Disabled?

This video was suggested to me by a friend.  While not something I thought much about, that is largely BECAUSE a lot of video games have become inaccessible to me over the years.  I used to play Nintendo in the '80s and Sega Genesis in the '90s, but now, with the Wii, and other video games that require physical actions in order to play?  It's all but impossible for me to consider playing.

So while I'm not hugely into video games, I am all for their being made more accessible so all of us can enjoy them, too.

Saturday, August 16, 2014

Frustration: Doctors and Pretenders

Doctors' Ignorance Stands in the Way of Care for the Disabled (an article written by Leana Wen) wasn't shocking for me.  Especially having gone to the doctor myself recently (and having to make appointments for wheelchair evaluations.)  At my appointment last week, I pointed out that though my symptoms could have been caused by my disability, they usually presented when people with CP were older, I suspected another cause.  His response was, "Okay," like he was taking in new information.

Though they're preliminary tests showed nothing, I was lucky that further tests revealed that my hunch was correct.  Today I'm on day four of a seven-day course of antibiotics.

It's why it irked me a bit extra when I read Here Is an Able-Bodied Man Who Identifies as a Man With a Disability (written by Rick Juzwiak.)  Because while I am making appointments, spending hours on the phone trying to find places that are in the network of coverage for my insurance, in order to get a new wheelchair, this guy can just get one.  He makes enough money that he can drop $2,000 on something he doesn't actually NEED.  In order for my insurance to cover a new one (because there's no way I can afford one on my own), I need a doctor to refer me to a physical therapy evaluation.  I need to make sure I find a doctor at that clinic who is covered, coordinate transportation, go in, then call the clinic which will do the PT evaluation. (The second one, because after I scheduled with the first, they called and informed me that though I was referred to them, my insurance didn't cover it.)  And on and on from there.

Ironically, though, men like that, and women like this never get confronted.  They can go on their merry ways, taking advantage of the things that make our lives possible, and they don't deal with people telling them they're not disabled enough to qualify for what they don't need, when we are often made to do a ton of preliminary things just to get what we need to make our lives possible.  We have to go to the doctor, to have them refer us to get what we need, but when we do, the reality is, they probably won't know the first thing about our disability or how it affects us.

Thursday, August 14, 2014

New Wheelchair Time

It's that time again.  Time to jump through lots of hoops to get a new wheelchair, BUT it made me think of the happiness I felt at seven years old, getting my first wheelchair.  Then, I wasn't aware of just how much of a process there WAS regarding getting what I needed.  I was just excited about the end result.

Note to Self:  As irritating as it is to spend tons of time on the phone and schedule two separate appointments so my insurance can cover it, the end result of a new chair is worth it.  Just look at my face.  (And look at my sis, who can't resist touching it, haha!)

In the meantime, I'll be concentrating on the important things this picture reminds me of: the freedom in a new chair that doesn't break all the time.  The color.  The brand.  So exciting.  Hoping for a great new chair sometime soon!

Wednesday, August 13, 2014

Monday, August 11, 2014

Advice: How to Address Disability With Students?

Teachers with disabilities/health problems -
How do you address your condition(s) with your students? Do you? How do you explain your frequent Dr’s appointments, wheelchair, crutches, braces? I find that it’s easier to address it first because someone WILL ask and they’re all curious, especially if some assistance devices are visible. For example, I wear AFO leg braces, but I like to wear dresses, too - which means my tall socks, AFOs, and sneakers are visible. And usually don’t match the dress. How would you explain it if you were me?

Though I'm not a teacher, I've done childcare in various jobs in the past (babysitter, camp counselor, respite care provider.)

The short answer is:  It's up to you whether to, and how to address it.

I've found it helps to be honest and explain things at the kids' level of understanding.  (Check out Tonia's Big List of Resources for Learning About Disabilities for positive representations of disability in media, ranked by age group.  Perhaps, those would help you talk about it more freely?)  

So just be up front about it.  Maybe during a getting to know you game, or as a part of your introduction to your class, include a sentence or two about your AFO's, and/or your disability.  Try not to make a joke out of the non-matching socks/shoes/dress thing.  If it were me, I'd take that seriously and make it clear that teasing won't be tolerated.  As the teacher (and fellow human being) you deserve respect.  If you make fun of or make light of something, your students might not know where the line is between what is humor, and what's offensive.

Hope this helps!

Friday, August 8, 2014

Summer Camp for Kids with Disabilities

I was talking to someone today, who said that camp was the only place she ever felt she belonged.  It reminded me of just how much of a positive experience going to summer camp for kids with disabilities was for me.  I went to camp each summer from ages thirteen to fifteen.

It was one week during each of those years when I felt like I belonged.  (This is one of the few pictures there are of me at camp - because I was always the one taking the pictures - at the beginning of my last week there, at fifteen.)  That smile says everything.  

I got to hang out with friends who knew what it was like to be like me.  Who used wheelchairs and crutches and walkers. And someplace where that just didn't matter, because we were all just there to have a great time.  I didn't know that in seven years' time I would get a job as a camp counselor (at a different camp) but I think my experience as a camper really influenced my decision.

We had such a competent staff, made up of people from all around the world.  I had a counselor from Holland, and one from New Zealand and one from Australia. They were energetic and positive and available at ALL hours of the night if a camper needed something.  Not one of them shamed any one of us about anything related to our disabilities.  

It was fantastic.  We had dance parties and camped outdoors for a night.  We horseback rode and went swimming.  We did arts and crafts and went boating.  We had dinner at breakfast.  Made up our own cabin cheer.  (I still remember the latest one, to this day.)  We made our own homemade pizza.  We listened to CDs and talked and wrote letters.  We used computers (at the dawn of the internet) and found books in the rec building.

It was so, so positive.  A real ray of light when I look back at it, for sure.  

I'd definitely recommend this experience to any kid with a disability.  Parents, if you have the means, chances are, your child will have a fabulous time.  They'll never forget it.  Or the people they met.

Thursday, August 7, 2014

Advice: Respite & Being Carried

If you have a disability and need to be lifted to and from your chair or upstairs I would love your advice. I’m going to be a respite care provider for an 8 year old boy with severe cerebral palsy and he needs to be carried if he’s not in his chair. He’s nonverbal so I can’t really ask him, is there anyway to make the process more comfortable or easier for you? Do you have any tips? Thanks!

I have CP, and I don't need to be lifted and carried, in general.  However, I have experienced surgery and recovery where I did have to rely on others to be lifted and carried.  I've been reliant on others while in the water (I can't swim) and for long distances.

While I would definitely recommend hearing from someone who has to be lifted and carried on a more daily basis, like you described, I thought I'd offer a few things that always made me feel safer when I did have to rely on others to go from one place to another:

1) Be sure you  spend time with your client, getting to know him as a person, his likes and dislikes (things apart from his physical and medical needs.)

2)  Take your client's cues regarding touch.  He may be nonverbal, but that does not mean he is not communicating with you.  I'm sure that, soon, you will learn when he's happy, and when he's sad, and when he's upset.  Start small and gradually work your way to lifting and carrying.  Ask your client if it's okay before the touching him, lifting him, or carrying him (yes or no - if he can do something like blink for yes, and not blinking for no.  If not, pay attention to other things.  Is he smiling?  Or is he crying and  does he seem nervous?  If so, respect that he is not ready for whatever the next step is with regard to contact.)

3) Spend lots of time with your client AND their parent, so he can feel safe with you. 

4) Personal power is super important to kids with disabilities.  Let him choose between two things whenever possible.  And be patient,  It can take concentration and energy to get our bodies to do what our brains are telling them to do.  If you ask him a question, give him the courtesy of giving him the time to respond however he can.

That's all I've got at this time - again, though, I'd definitely see if anyone who is in your son's shoes responds.  It's always best to get advice from someone who's been there.

Hope this helps!

9th Grade Was a Lovely Time...No, Really...

It's Throwback Thursday again - and this is definitely me - rocking a very 90's hairstyle - at fourteen.  Ironically, even though I've got my crutches in this picture, this was the year I realized that using my wheelchair at school actually freed me up to do a lot more.

I wasn't spending all of passing time trying to get one place to another and avoiding crowded halls.  In high school, I could go where I wanted when I wanted.  It was a revelation for a kid who, at the thought of using my chair at school, was mortified.  In my mind, I didn't "need" to use it, even though the high school I attended was huge and it would have been unrealistic (and exhausting) for me to walk the entire day.

Freshman year was pretty awesome.  Yes, getting up the giant ramp to the cafeteria, gym and choir room was intense, but it was my own personal challenge, and I often turned down offers of help, because it was all worth it when I got to coast back down.  I set the record for the static arm hang in gym class.  Even though I had to be lifted up to reach the bar, and lifted back down to the floor that 1 minute 17 seconds made any potential embarrassment worth it.  No one made fun of the kid who had the best time - who even managed to outlast the girl on the gymnastics team by 5 seconds.

There were instances of bullying (one, in particular).  There were kids who used the accessible bathroom stalls to smoke cigarettes in.  There was that feeling I could never quite shake that I would have made it into a higher-level choir if I weren't obviously disabled.  But overall?  It was a great time in my life.  I remember being happy with myself, and not often wanting to be different, or FEELING especially different.  I had teachers who pushed me academically.  I had friends.  It was a pretty carefree time.

It's nice to look back at.

Abled Privilege Is...

#abledprivilegeis is a discussion about the privileges able bodied people have, and it's going on  (mostly on Twitter) but I thought I'd add my own insights...

Abled privilege is having people listen to you, not ignore you, when something terrifies you as a toddler.

Abled privilege is not being called "cute" in the same way a puppy is called cute for all of second grade.

Abled privilege is being able to go on all the school field trips, and never being arbitrarily banned at the last minute without an explanation because of accessibility issues.

Abled privilege is going to the bathroom whenever you need to, in middle school, not having to hold it all day until you get home because of accessibility issues.

Abled privilege is never even having to entertain the thought that a guy in high school Spanish will get up from his desk and take the vocabulary word you were given for a game, and replace it with his (because it's more difficult and he wants an easy one.)  You don't have to think about how he gets away with it in front of the teacher because he knows it will take you extra time and energy to go get it back.

Abled privilege is being able to attend all your college classes, even when it snows, because your access isn't blocked by the fact that the plows inexplicably pile all that snow in front of the ramps on campus.

Abled privilege is being able to talk about having your personal space and dignity violated as if it's only theoretical.  It's asking people "what they think about that" and not "how can we stop it?"

Abled privilege is being able to go wherever you want.  On grass.  On gravel.  Through narrow doorways.  Up stairs with no railings. It's taking for granted the unlimited access you have to the world around you.

Abled privilege is not having to choose between the mobility aid that is smaller (but means you will move slower) and the one that is bigger, and will give you more freedom (but can't fit into your friend's car.)

Abled privilege is never being told that there is not a place for you, at a public event you paid to attend.

Abled privilege is the ability to go out in public without being stared at, approached and asked invasive questions, or talked to condescendingly.

Abled privilege is never being told you're "so brave" simply because you are out in public.

Abled privilege is never being told "It's a shame you're in a wheelchair.  You're so pretty."

Abled privilege is saying no, and knowing that it will be respected.

Abled privilege is never having teachers discriminate against you, or think you are less because of what you use to get around.

Abled privilege is being in control of the amount of pain you experience.

Abled privilege is not having to attend meetings as a child, that are focused on all the areas you struggle in, through no fault of your own.

Abled privilege is not having to worry about a stranger touching your person, or taking you somewhere without your permission.

Abled privilege is not being on the receiving end of dirty looks and comments for using the stairs when the elevator is out of service.

Abled privilege is never being trapped on one floor because while you were there, the elevator broke down.

Abled privilege is having a whole audience worth of seats to pick from when attending a tour or a concert, not just the highest, most distant tiny row.

Abled privilege is not being told by the behind the wheel instructor (with 20 years' experience) that you could never learn to drive, despite it being only the second time you ever drove a car.

Abled privilege is never being hurt or humiliated on purpose, in the name of "overcoming"something that is integral to your own identity.

Abled privilege is not having to be degraded with ableist names, or have chewed up food spit on you.  Never having to prove that, actually you read and write four years past grade level.  Never having to deal with the person testing you, seeming shocked by your intelligence.

Abled privilege is not having to jump through hoops to get the things that are necessary for you to navigate every day life.

Abled privilege is getting a job as a summer camp counselor (overnight for a week at a time) AND being able to take showers there.

Abled privilege is not having your startle reflex intentionally triggered by family or friends, and having them laugh at you.

Abled privilege is having unlimited access to AND accurate representation of people like you in the media.

Abled privilege is never experiencing the subtle (or overt) pressure of having to justify your existence.

Abled privilege is knowing that your life has value to society, and that if someone hurts you or kills you, the person responsible will be held accountable.  Your perpetrator will not receive mercy or have their crime justified because of how hard it was to have you in their life. It's knowing beyond a shadow of a doubt that your life matters.

Wednesday, August 6, 2014

Re: More Than Conquerors: Romans 8:26-39 and Disability

I just read More Than Conquerors: Romans 8:26-39 and Disability and at first, I was really excited.  Finally!  Someone talking about the issues of faith and disability.  Then, I started reading, and it became clear: this author, though obviously well-intentioned, is not disabled.  (Later, confirmed by the author herself.)

It's evident in the movies she chose as references, in the language she uses, and that she uses our experiences as disabled people as study questions at the end of her article.  That's not to say she isn't factually correct about some of the things she writes about.

It's an authentic voice that's missing.

Proximity to disabled people does not give an able-bodied person a disabled perspective.  What I wouldn't have given to read a similar article written by one of us.  One of us who knows about disabled representation in the media, and the harm in using disability as a plot device.  One of us who understands, firsthand, what it's like to experience ableism in the church, to be ministered to, even when we don't want to be, to have our experience being prayed for, or stared at, or blamed when God doesn't heal us like they thought He would.

What I wouldn't give to not have my own experiences reduced to study questions - to ask for opinions - on something that is my reality.

Tonia's Big List of Resources for Learning About Disabilities

[Image is: The word 'option' written on many small pieces of white paper in different colors and fonts]


The Little Couple - This show follows married couple Bill Klein, Dr. Jennifer Arnold, and their children, Will and Zoey as they live their lives.  All four are little people.  By far, some of the best disability representation I have ever seen.  So positive.  Watch with the whole family.


Daniel Tiger's Neighborhood - Daniel meets a new friend, Chrissie, who uses crutches and wears braces.  He quickly learns they are more the same than they are different.  (Children 2 and up)

Follow That Bird - Big Bird's friends (including Linda) set out to find him after he runs away from the Dodo family.  This was my favorite movie as a child.  *Use discretion if your child has a foster/adoptive background, has been in a custody dispute, is home after a kidnapping or has known abuse involving being caged. (Children 2 and up)

It's Okay to Ask by experts at Gillette Children's Hospital and illustrated by Nancy Carlson - Introduces audiences to five kids with different disabilities and/or complex medical conditions and emphasizes that kids of all abilities can be friends with each other.  (Children 2 and up)

Sesame Street: Elmo and J.R. Martinez Talk About Their Feelings - Elmo talks to J.R. Martinez about how he coped when his skin got hurt. (Children 2 and up)

Sesame Street: The Wheels on My Chair Go Round and Round - A little girl on Sesame Street sings a song about her wheelchair.  (Children 2 and up)

Sesame Street: What My Family Wants You to Know About Autism - Grover learns about autism when he meets twin brothers AJ and Garrett, who are autistic.  (Children ages 2 and up.)

Why Is Dad So Mad? by Seth Kastle - A young lion cub learns why their dad is different after going overseas to work.  This book does a wonderful job explaining combat-related PTSD to young children and is written by a veteran who wanted to explain the change in him to his own young daughters.  (Children ages 2 and up.)

Heartsongs by Mattie J.T. Stepanek - Innocent observations (between the ages of 3 and 5) by poet Mattie Stepanek, who was born with a rare form of Muscular Dystrophy.  Topics include senses, seasons and celebrations.  (Children 3 and up)

Karen's New Friend (Baby-Sitters Little Sister #36) - Seven-year-old Karen Brewer learns how to be a friend to the new student in her class, Addie Sidney, who has Cerebral Palsy.  (Though the summary online uses words like 'victim' to talk about Addie, there is no such language in the book itself.  Addie is independent, speaks for herself, and has friends and hobbies just like other girls her age.)  (Children ages 4 and up.)

Red: A Crayon's Story by Michael Hall - a blue crayon has a red label, and all the other crayons tell him to just try harder to draw red strawberries, red apples and red ants.  One day he learns it's okay to be blue, and learns all the things blue can color.  An important book for disabled children living in a largely ableist world. (Children ages 4 and up.)

Celebrate Through Heartsongs by Mattie J.T. Stepanek - a book about celebrating life every day, with even more poetry by Mattie.  (Children 8 and up)

How to Train Your Dragon - Hiccup finds hurt dragon, Toothless, and builds him a prosthesis.  Together, they are unstoppable, even when the unthinkable happens (Children 12 and under.)


Reflections of a Peacemaker by Mattie J.T. Stepanek - published after Mattie's death in 2004 from a rare form of Muscular Dystrophy, this final anthology of poetry written over a ten year span (ages 3 to 13) paints an amazing picture of the person Mattie was.  His spirit is very much alive on all the pages of this book.  (Children 11 and up.)

Journey Through Heartsongs by Mattie J.T. Stepanek - poetry by Mattie Stepanek, who was born with a rare form of Muscular Dystrophy.  This book focuses on more mature themes including, grief at losing a sibling, and hospitalization.  (Children 12 and up.)

Soul Surfer - 13-year-old Bethany Hamilton was born to surf.  When she is injured, she must learn to do many things differently.  (Children 12 and up.)

Heartsongs Collection: The Poetry of Mattie J.T. Stepanek - unabridged audio book of all of Mattie J.T. Stepanek's Heartsongs poetry, read by the author.  I have this and it is so incredible.  (Children 13 and up.)

Hope Through Heartsongs by Mattie J.T. Stepanek - poet Mattie J.T. Stepanek writes about themes like disability, divorce and death, but also hope and peace in this powerful collection of his work.  (Children 13 and up.)

Joan of Arcadia - a television show focusing on 16-year-old Joan Girardi, whose older brother Kevin, recently became paralyzed.  Majority of portrayal regarding disability is positive.  The family comes to terms with their new reality and Kevin learns to adapt.

Loving Through Heartsongs by Mattie J.T. Stepanek - A bit more mature in tone, though not inappropriate in any sense, poet Mattie Stepanek writes about love.  (Children 13 and up.)

The Facts of Life: Cousin Geri - A fantastic episode of The Facts of Life that guest stars Geri Jewell, who has Cerebral Palsy.  (Children 13 and up.)

The Glee Project - Though I haven't been able to find any full episodes of this show since they aired, The Glee Project (a reality television show meant to find new talent for Glee) featured many disabled competitors: Mario Bonds and Ali Stroker to name a couple.  They provided great insight into the reality of living with a disability.  (Children 13 and up, though any age can watch the clips I linked.)

Glee - episode 4x14 "I Do" - While a lot of Glee's disability representation is problematic, this episode in particular is mostly positive, particularly the casting of Ali Stroker (who is actually paralyzed) as Betty Pillsbury.  Though not a main storyline most of that which features Betty is inclusive, normalized and positive.  (Children ages 14 and up)


A Brilliant Madness by Patty Duke - Actress Patty Duke writes about the reality of living with bipolar disorder, both before and after her diagnosis.

A Long Way Gone by Ishmael Beah - An unprecedented firsthand account of a former child soldier who was abducted and forced to fight in Sierra Leone's civil war and the severe Post-Traumatic Stress Disorder he developed.

An Unkindness of Ghosts - Rivers Solomon authors this fictional account of Aster, a young, Black, autistic-presenting protagonist, on board the space ship Matilda.  Containts the best disability representation I have ever read in fiction.

Between a Rock and a Hard Place by Aron Ralston - Mountaineer and outdoorsman Aron Ralston details his experience becoming trapped in a slot canyon for six days, and eventually performing his own amputation in order to survive.

By Faith Not By Sight by Scott MacIntyre - The true story of a gifted child who grew up blind and developed life threatening kidney disease later in life.

Fighting for My Life by Amy M. Mareck - The autobiography of a young woman, diagnosed with cancer at age 13 and who passed away at age 19.

Gabby by Gabrielle Giffords and Mark Kelly - Chronicles the survival and recovery of congresswoman Gabrielle Giffords following an assassination attempt resulting in a traumatic brain injury.  The final chapter was written by Gabrielle herself.

Grey's Anatomy - Medical drama which covers various disabilities sensitively and accurately   Season 5 - Dr. Dixon, a cardiac surgeon with Asperger's Syndrome comes to work at Seattle Grace. Dr. Hunt deals with war-related PTSD.  Season 7 - multiple doctors deal with PTSD (which presents differently in all of them,)  Dr. Torres recovers from a car accident which resulted in brain and various physical injuries.  Season 8 - Dr. Bailey develops OCD following a mistake in the OR, and has to get it treated before she can return to operate again,  Also, a 12-year kidnapping victim and trauma survivor is treated by the surgeons and a therapist so she can learn to trust and feel in control of her own life.  Season 9 - Following a plane crash, Dr. Yang develops reactive psychosis and Dr. Robbins has to recover and adapt to life after losing her leg.

Human After All by Kate Margaret Bigalk - a collection of poetry which touches on many experiences including the author's own as a woman in a wheelchair.

In An Instant by Lee & Bob Woodruff - The story of how ABC News co-anchor Bob Woodruff survived and recovered following a traumatic brain injury he sustained while on assignment with the military in Iraq.  Book contains alternating view points between Bob and his wife, Lee.

It Happened to Nancy by An Anonymous Teenager - A true story of a teenager raped and subsequently living with AIDS, taken from the pages of her own diary.  Though dated, the candor and insight of this book remains relevant.

It's Not About The Bike by Lance Armstrong - Cyclist and cancer survivor Lance Armstrong shares his story of diagnosis and recovery.

Just Peace by Mattie J.T. Stepanek with Jimmy Carter - contains personal insight and emails from poet Mattie Stepanek about the reality of living with a disability

Left Neglected by Lisa Genova - written by a neuroscientist, this book does an excellent job conveying what it can be like living with left neglect (which most commonly results from an injury to the right hemisphere of the brain.)

Life Is Just What You Make It by Donny Osmond - Singer Donny Osmond shares his story and his experiences coping with a severe anxiety disorder.

Life Is Short by Jennifer Arnold, MD & Bill Klein - Stars of TLC's The Little Couple, Dr. Jen Arnold and her husband Bill Klein share the story of their lives, both individually, and together as they married and started a family.

Lucky Man by Michael J. Fox - Actor Michael J. Fox shares many life experiences in his memoir, including how he's adapted after being diagnosed with Parkinson's Disease.

Messenger by Jeni Stepanek - If I could only recommend one book, it would be this one.  In addition to being the story of her son, Mattie's life, and eventual death from a rare form of Muscular Dystrophy, this is also the only book I've ever found that details what it's like for a disabled mother raising disabled children.  Packed full of insight, intelligence and love, I can't recommend this book highly enough.  If you have the opportunity to read it, please do.

Mistaken Identity by Don & Susie Van Ryn and Newell, Colleen & Whitney Cerak - The true story of two families brought together by a tragic car accident, which killed one family's daughter, and left the other family's daughter to first recover and adjust to life with a traumatic brain injury.  The epilogue is written by Whitney herself.

My Beautiful Broken Brain - Lotje Sodderland experiences a hemorrhagic stroke and wants to document her recovery so she can have a record of the experience.  A bit intense at times, especially if you or a loved one has experienced a brain injury, but a good firsthand account.

Push Girls - follows paralyzed women through their day to day lives.

You Get Past the Tears - Hydeia Broadbent (AIDS activist) and her mother, Patricia Broadbent, co-authored this book about Hydeia's life.  It chronicles raising a child with HIV/AIDS in the early 1980s when not much was known about the disease.  I learned so much more about Hydeia (whom I have seen on various television specials growing up.)  This book is not sugar coated, it's reality for one girl and her family, and that, to me, is what makes it so compelling.


If you are looking for disability representation in the media by people who are disabled (chronically ill, physically disabled, intellectually disabled, learning disabled or Deaf), here are a few names to know:

Jyoti Amge (shortest living woman in the world)

Jennifer Arnold (mommy, neonatologist, simulation educator, cancer survivor, and co-star of TLC's The Little Couple)

Sean Berdy (actor)

Mario Arnauz Bonds (singer, motivational speaker and voice actor)

Jamie Brewer (actress)

Jen Bricker (speaker and acrobat)

Kiera Brinkley (dancer and choreographer)

Hydeia Broadbent (AIDS activist)

Joshua Castille (Actor/Artist)

Loretta Claiborne (Special Olympics athlete)

Meryl Davis (Sochi Olympics Gold medalist, ice dancing)

Daniel N. Durant (in the Broadway production of Spring Awakening)

Treshelle Edmond (Deaf actress and ASL performer by heart)

Sandra Mae Frank (Broadway Debut this Fall as Wendla Bergman in Deaf West's Spring Awakening)

Nia Sioux Frazier (dancer and singer)

Carly Fleischmann (Autistic advocate)

Aaron Fotheringham (extreme wheelchair athlete)

Gabrielle Giffords (Proudly served Arizona's 8th District in the United States Congress 2007-2012.)

Whoopi Goldberg (comedian/actress/singer/songwriter/political activist/talk show host)

Sean Gray - (singer in punk band, The Birth Defects)

Bethany Hamilton (professional surfer)

Amelia Hensley (Actor/Artist)

Geri Jewell (actress/comedian)

Bill Klein (dad, husband, master of nothing, self proclaimed comedian, male, 4 ft even)

Blake Leeper (Paralympic athlete)

J.R. Martinez - (best-selling author, motivational speaker, advocate and wounded U.S. Army veteran)

Marlee Matlin (actress)

Kyle Maynard (speaker/author/athlete)

Jillian Mercado (model)

RJ Mitte (actor)

Gregg Mozgala (triple threat: actor, writer, cripple)

Robby Novack (Kid President)

Luca Patuelli (dancer)

Lauren Potter (actress)

Amy Purdy (Sochi Olympics Bronze medalist, snowboarding)

Juliana Ramos (traumatic brain injury survivor)

Angela Rockwood (model)

Jeni Stepanek (author, peacemaker and mother to Katie, Stevie, Jamie and Mattie)

Mattie Stepanek (poet, peacemaker and philosopher who played after every storm)

Ali Stroker (singer.  actress.  dancer.  wild child.  happiness isn't a destination it's a way of life.)

Zack Weinstein (actor)

Stella Young (writer, comedian, knitter, crip, inspiration boner killer)

Maysoon Zayid (comedian)


Interview with Jen Bricker

Speech by Jeni Stepanek

Interview with Ali Stroker

Stella Young - Inspiration Porn and the Objectification of Disability

* This post is in progress, and will be added to over time.

Monday, August 4, 2014

Praying with Lior

This documentary is one I saw recommended on Teaching Your Child to Show Love and Respect to Individuals with Special Needs as a film that could help educate able bodied children on how to interact with disabled children.  I have to say, just based on the trailer of this film, I would caution parents against using this as any type of educational method for your child.  Even the tag line to this film: "Faith Can Be Simple" to me, seems deeply condescending and ableist.

I've watched a couple different trailers, and each is really troubling to me, frankly.  In the first, I saw Lior's classmates being interviewed and sharing that "Lior's Down Syndome is his test," and that "it's also part of our test.  How we treat Lior."  I saw Lior's own father say in an interview that "he's not st---d, he's re-----d, there's a difference," and then laughing.

In another trailer, I saw kids claiming that, "I don't even think Lior knows he's different."  Then, it cuts to Lior and other kids on the playground.  Lior wants to play football, and the comments by the kids are all really harmful in different ways: "He wants to play football.  We gotta let him."/"No, he stinks."  If this child really thinks Lior is unaware of his differences, watch his face as he says, "I'm gonna go play another ball" and then goes to stand alone and watch the others play.  Then there was another classmate, who said, "I let Lior choose a game and play whatever he wants, because I want to make it easier for him in his life."

This is not what we should be teaching our kids, and I'm horrified by all the positive press this documentary has gotten, even by people associated with the Special Olympics?  Really?

It's not helping anyone, least of all Lior and kids like him, to view his Down Syndome as a test to be endured or overcome.  It's not helping him to hear his dad use pejorative terms to describe him.  It's not helping him for kids to be mean and exclude him, but it's just as unhelpful for kids to indulge him in his every whim because they want to "make his life easier."

So, your kid goes to school with someone who has Down Syndrome, and Praying with Lior is not a road map toward success.  How should my kid behave toward a kid with Down Syndrome?

Well, it's pretty easy.  Teach them to respect that child, in the way they speak and interact.  Teach them to include everyone in big group games, and encourage turn-taking on the playground.  First one child picks a game, then another, and so on.

I can't get over how disappointing these trailers were.

Sunday, August 3, 2014

Daniel Tiger's Neighborhood - Daniel's New Friend/Same and Different

Daniel Tiger has a show about disabilities - wanna review it?

Daniel's New Friend:
I may be a bit biased but I think Chrissie is a fabulous character.  As someone who used crutches and wore braces as a little girl, I would have loved to see her on TV when I was growing up.  I love how Chrissie asks for help when she needs it (and doesn't just expect people to do for her.)  I also think it's really good that she's just as assertive about when she doesn't need help. I like that she goes to school, and makes a point to tell them she does.  I like that she tells Daniel, and Miss Elena and Prince Wednesday about different ways she adapts while playing running games.  And I really, really appreciate that the other characters asked and waited for permission before they touched her braces.  My favorite part of this episode?  Definitely when Chrissie was like, "Daniel, can I show you something?  This is how you hold reins," because it had nothing to do with her disability, and it showed she's clearly knowledgeable about other things!  

Same and Different:
What I liked about this one was that Chrissie was not the token "different character feeling different."  She remains very well-adjusted.  As such, I really liked that Daniel was featured as the one who realized a way he was different and felt marginalized.  I loved when Chrissie identified with him, though, and said, "I use these crutches to walk and wear these braces.  I'm different, and people see it," because it is so true.  But it isn't necessarily a negative thing.  The other thing I loved about this was the taped piece at the end about the twin boys (one of whom uses a walker) because that was SO me and my sister growing up.  I'm so glad Daniel Tiger's Neighborhood actually sought out and found a child with a disability to feature, because it's so important.  (Oh!  Also!  Chrissie's crutches and braces are super accurately portrayed, and the way she uses them is so spot on.  It's clear the Daniel Tiger team did their research and I love it!)

If you have kids in your life between the ages of 2 and 8 and want to introduce them to people with disabilities, I think this is a great way to start that conversation.  Likewise, if you have a kid in this age range that is disabled, this is a great way to show them they are not alone!  

Friday, August 1, 2014

Advice: First Overnight Trip Using a Wheelchair

Hey!  I need some advice. Next weekend I'm going out of state to visit family. I'm a little nervous because it'll be my first overnight trip using a wheelchair. My mom's driving, and she booked an accessible hotel room. Some of my relatives' houses have one or two steps; I've practiced steps with a walker in PT but I don't know how steep these ones are. My family really wants me to feel welcome there, it's just a lot of new things at once! Any suggestions for calming my jitters?

Ooh!  You gave me a doozy!

First, the accessible hotel room.  I would say check that out thoroughly before you get there. While some hotels are amazing and fabulous and mean it when they say accessible, some are not as accessible as we need them to be. 

You can do this a couple of ways (I'd suggest both, in the interest of thoroughness.) If at all possible, go to the website for the hotel you're booked in, and pull up pictures of the accessible rooms.  This will help you start to visualize your space and what you might need to ask about. Then?  Call the hotel ahead of time yourself and ask to speak to someone specifically about the accessible rooms.  Tell them which room you've booked.  Ask about elevators, doorway widths, grab bars in the bathroom, the height of the beds, the toilet, the sink, anything at all that's niggling at you.  Don't be afraid to be direct.  The hotel employees won't necessarily know to say they have what you need if they don't know what you need. 

And the stairs...I don't have a ton of advice for you there other than don't be afraid or ashamed to ask for help, if you need it.  It's impossible to plan for everything.  The stairs might be totally fine for you to navigate.  But if they're not, ask a steady, sturdy relative to give you a hand.  They want you to feel welcome, and part of that, I'm sure, is feeling welcome asking for help.  (You could also ask relatives to take pictures of their steps and text them to you, again for visualizing purposes.  But if you think this might psych you out?  Just think positively and remember there is no shame in asking for help.)

Other tips?

1) Bring comfortable clothes.  Traveling can be stressful, extra stressful when disabled.  Your trip will go so much better if you're not wearing that one pair of jeans that's hard to get in and out of, or that dress that fastens in back.  Bring stuff you can move in, not stuff that restricts you.

2) Bring the shoes that work best for you.  The sturdiest.  The ones with the best tread.  Whatever you need to ensure your safety the most.  (And if you want, bring the sandals for when you're sitting down.)

3) Bring every mobility aid you think you might need.  I have both a manual wheelchair and Canadian crutches.  Especially when going somewhere unfamiliar, I take both, because you never know about doorways, distances, stairs, uneven ground, etc.  Take as many options for yourself as possible.

4) If you have one, don't forget your parking sticker!  (Especially if you're not driving, this can be an easy one to me...I've done it.)

5) Sit and relax as much as you can.  Sometimes at family gatherings, there are a lot of people standing and talking.  Don't feel weird about asking for a chair.

That's about all I have, but if I think of anything else, I'll be sure to come back and add it!  Hope your trip goes well!

Re: Oh, Your Shelter Isn't Accessible?

Oh, So Your Shelter Isn't Accessible? - And Other Reasons Women With Disabilities Experiencing Violence Cannot Or Do Not Seek Help

This one's an eye-opener.  Holy cow.  How is it that I've lived 33 years and never even considered that women's shelters are not accessible?  So unacceptable that not only are so many of us mistreated, but also are unable to seek help due to accessibility issues.

This is an absolute must-read.

Re: New York Adopts Updated 'Handicapped' Symbol

In First, State Adopts Updated 'Handicapped' Symbol

This looks fabulous!  I'm all for updated terminology and a more active symbol!  I hope other states will follow New York's lead with this.