Thursday, March 31, 2016

Cerebral Palsy Awareness Month Interview #7

It's the last day of March - which means there is still time to squeeze in one more CP Awareness Month interview - mine!  Feel free to leave comments or questions, or find me on Facebook (linked at the bottom) to keep the conversation going.  I would love to hear from you!

--

What is the most important thing you have learned about yourself?

The most important thing I have learned about myself is that it is okay to have Cerebral Palsy and it is okay to be disabled.  I grew up with a lot of internalized ableism, and it honestly took me until my 30's to realize that there is nothing inherently bad about being disabled.  It's a part of my identity that I can take pride in.

What is your favorite thing about the month of March?

My favorite thing about the month of March is all the green!  Green is my favorite color.

What is your favorite thing about yourself relating to your disability?

My favorite thing about myself relating to my CP is honestly that it gives me the opportunity to connect with younger people who have CP.  It is so awesome to be able to have that connection with another person and tell them, "Yes, I've been through this, too.  You're not alone."

How do you deal with people's invasive questions, comments, or stares?

It really does depend on who is doing it and where I am when it happens.  To be honest, most of the time I find I can't say anything in the moment, so I save it up until later and vent to my sis or another friend with Cerebral Palsy who understands.

What is your favorite song?

My favorite song right now is Flares by The Script.  I love the piano, the lyrics and the message in the song: that there is always hope and we are never alone.

What is one thing you want people to realize once they meet you?

One thing I want people to realize once they meet me is, honestly, just that I am normal.  Not in the way where I'm asking people to see past my CP.  I want people to realize that having CP IS normal for me.  There is no need to separate my disability from me, no need to look upon me with pity or sadness.  There is no need to praise me for doing things you would never praise the average person for doing.  Yes, some things are more difficult for me, but adapting how I do them is also very normal for me and does not require a round of applause.

Do you have a role model or a favorite celebrity in the disability community?  If so, who are they, and share a little about them.

Ali Stroker is my favorite celebrity in the disability community.  I have followed her career for the past four years, watching her as she started out on The Glee Project in 2012 and then starred on an episode of Glee in 2013.  Most recently, she was the first woman in a wheelchair ever to be on Broadway.  (She and the cast of Deaf West's Spring Awakening were on Broadway from September, 2015 through January, 2016.)  

Have you ever watched TV, movies or a music video and thought, "That person's just like me!"?  What was the show/movie/video?  Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

The moment that made me feel the most seen, heard and validated as a disabled person was seeing Ali Stroker in the music video for the song "One."  This was late 2012, which meant I was in my 30's before I ever saw a woman in a wheelchair depicted as anyone's love interest anywhere in the media.  Seeing Ali portrayed as desirable and in a healthy relationship was huge for me.  Often, disabled people are desexualized by the media.  I recently reviewed a book, where the character with CP sleeps with a boy for the first time, and the whole thing is completely off-page.  So, seeing Ali in this video, knowing she was happy, knowing they were making it work, and it was never about pity or any of the other gross stuff we see regarding our community and romantic relationships was a very big deal, and rare, indeed.

What is your favorite piece of adaptive equipment and why is it your favorite?  (Wheelchair, walker, crutches, etc.)  (Can be yours or someone else's.)

My favorite piece of adaptive equipment is Greenie, my wheelchair.  I really love him and all the freedom he affords me.  I love that he rolls really easily and can turn really tight corners.  I love that he is sleek and does not take up a lot of room.  I love how green and beautiful he is.  I think he is my favorite because he is the first wheelchair I was most involved with getting.  So I feel a particular pride in using him and like keeping him clean and shiny.

What is your favorite scent?

My favorite scent is the combination of fresh air on a spring day, and fresh coffee brewing.  It is the most magical smell.


***

{Image is me smiling in my wheelchair.
Photo credit: me.  March, 2016}




I'm Tonia, and Tonia Says is my blog!  You can learn more about me on my About Me page.  Don't forget to connect with me on Facebook!

Monday, March 28, 2016

K Says: Cerebral Palsy Awareness Month Interview #6

As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP.  (My own interview will be posted at the end of the month.)  I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP.  I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.

Next up, my friend, K:


--

What is the most important thing you have learned about yourself? 

I think the most important thing I have learned about myself is something that I have known for as long as I can remember, and yet I am still learning it each and every day: I am ABLE. We have a home video of when I was about three years old…I was fiddling with a cap to open something and my mom said, “Let me help you with that.” I looked her (and her video camera, by extension) fiercely in the eye and declared, “No. I CAN DO IT.” She laughed and said, “That’s my can-do girl!” That’s what she always called me, her “can-do girl,” because “I can do it” was something that I repeated over and over—partly as a truth that I have always held close, but partly, I think, as a way of convincing myself of that. College has been an amazing way for me to confirm that truth for myself, though—time and time again, it has given me the opportunity to prove to myself and others how capable I really am.  

What is your favorite thing about the month of March?

Would it be a cop-out to say that my favorite thing about the month of March is that I get two weeks off from school for spring break? My favorite thing about THIS month of March has been binge-watching Grey’s Anatomy with you and Tara!

What is your favorite thing about yourself relating to your disability? 

I was originally going to say my tenacity, but I think my disability has given me a certain perspective and depth that I wouldn’t otherwise have. It’s impossible to know whether this is a direct consequence of my CP, but I think it is. Growing up, I always appreciated when people stopped staring at my legs and instead really tried to get to know the real ME, the whole of who I am as a person. It meant so much to me when I was no longer labeled as simply “the girl with CP” or “that kid who walks funny” – so even as a child, I made a conscious effort to reciprocate that…to look past outward appearances and to really get to know people for who they are. Oftentimes people are surprised when I wave to the cleaning staff or stop to talk to the woman who does outdoor maintenance work on our campus—especially because I’m not a very outgoing person—but I think it’s important to take a few moments to get to know the people you pass by every day, to listen to their stories and SEE them. If I didn’t have CP, I don’t know if I’d be as empathetic towards others in the same way.

How do you deal with people's invasive questions, comments, or stares?

I’m still working on this! Especially if it’s a child, I’ll answer as best as I can, because I don’t want him or her to grow up thinking that people with disabilities should be avoided (I HATE when kids stare and then the parent whispers, “Don’t stare!!” I get that it’s well-intentioned, but I’d much rather them ask politely than to avoid me or wonder and spread false rumors.). As far as stares go, I remember distinctly in high school when a teacher (!) was staring blatantly at my legs for the longest time, and it was making me uncomfortable….so the next time she did it, I stared at HER with the same intensity….she got the hint and looked away abruptly, and then never stared at me like that again! 

What is your favorite song?

Right now it’s a contemporary classical piece called Divenire by Ludovico Einaudi. I’m learning how to play it on the piano and it’s beautiful!

What is one thing you want people to realize once they meet you? 

I want people to know that CP is a part of who I am as a person, but it’s just that—ONE PART. I understand that if I’m standing or walking when someone first meets me, it’s very likely that my CP is the first thing they’re going to see, and that’s okay. But as one of my friends said to me recently, “Yeah, this [your CP] is a part of who you are, but you are also so much MORE than that. [Your CP] is not the biggest part of you.” My hope is that others will see me in this way as well…that they’ll be able to look past their initial impression of my unsteady gait and pay attention to the other aspects of who I am that are just as valid and just as important as my disability, if not more so. 

Do you have a role model or a favorite celebrity in the disability community? If so, who are they, and share a little about them.

I love Bill Klein  and Jen Arnold from The Little Couple—their show always makes me smile, and I LOVE that they adopted children who are little people as well!

Have you ever watched TV, movies or a music video and thought, "That person's just like me!"? What was the show/movie/video? Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

I can’t pinpoint a specific TV show, movie, or music video (and I wish I could…but disability isn’t often portrayed in the media!), but reaching out to other people who have CP and similar conditions (e.g., you and Tara, among others!) has made a world of a difference for me. It has been so validating to share stories with them and to realize that there are so many others out there who have gone through similar experiences. 

What is your favorite scent?

There are so many!! I love the smell of pine needles because it reminds me of when I was a little kid and I used to press my face against the branches of our Christmas tree and breathe in the scent of Christmas…but I also love the sweet, yeasty scent of fresh bread, just before it goes into the oven. 


 ***

   
[Image shows K as a
child.  She is wearing
a hat and smiling.
Photo credit: K]




Saturday, March 26, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 35-38

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 35:

Amy is transferring to UC Berkley and cites all of its credentials related to disability and accessibility regarding why it's a good campus for her.  In reality, according to the other review I linked earlier, UC Berkley has quite a lot of accessibility issues.

Amy had apparently read about the history of the Americans with Disabilities Act and once told Matthew, touching the cover of the book, "My people."  Disabled people are nowhere in the history books.  Probably because we are living our history right now.  Our civil rights movement was only 25 years ago.

This part made me feel really good when I read it, but it was difficult when framed from the perspective of the able-bodied character.  I wanted to know how this resonated with Amy and whether she was able to start to connect with other disabled people.  Start to shed some of her shame.  But we don't know any of that, because Amy becoming informed about her own history is really all about Matthew, apparently...

Chapter 36:

Amy and Matthew have a big fight in the previous chapter about her not wanting to move into some random apartment that he looked into moving into together, without even discussing it with Amy.  Amy said she is planning to go back to school.

In this chapter, Amy confesses she actually thought about staying here and living with Matthew."They could do it, she knew."

How exactly would they do that?  Part of having CP means that you are constantly thinking ahead when you have to go anywhere.  How is Amy going to get into a non-accessible apartment building?  Does it have stairs?  Do they live on the first floor?  How wide are the doorways?  Can she get in with her walker?  How is her stamina?  Can she use her walker still?  Not to mention that the kitchen and the bathroom would likely be difficult - if not impossible - for her to manage alone.

The only thing that hangs Amy up is the fact that Matthew mentions that taking care of her "should be his job" which is eerily similar to her mother saying, "you are my job."  And the problem in that, according to Amy is not how rude and offensive it is but that "her body's needs were boring" and that "no one should have to take care of them, exclusively."  Amy knows they could both do "so much more."

Chapter 38:

Amy has found her calling as a drama major at UC Berkley and is succeeding on campus as a playwright.  Her mother worries about whether or not she will have a paying career in this and Matthew says he thinks she will because of all the previous newspaper articles and TV coverage Amy has gotten.  He says people are "fascinated by Amy" and that they "want to know what she thinks."

This is notable because of the glaring point of view issue here.  Matthew believes Amy will have a career because she has been the object of inspirational stories in the media.  The fact is one really has very little bearing on the other.  People may be fascinated by Amy, but that doesn't mean Amy won't likely face discrimination in the job market.  Honestly, if Matthew's perspective is correct, it means it will not matter what Amy achieves, because she will still be the object of the same types of stories no matter what she does.  Those types of news stories are not for Amy herself, they are to make the able bodied audience watching her feel better about themselves.

I do hope Amy has a successful career, but I have my doubts.  In my experience, the able bodied public is not at all interested in hearing from disabled people directly.  Instead, they often like to hear about us via other able bodied people.

After Amy's play, she tells Matthew that being friends with him made her realize she could do more than she ever thought she could.

I continue to be flummoxed by her conclusions because, in my view, Matthew has almost exclusively, made it his duty to hold Amy back.  Throughout the whole text of the book, he has discouraged her from going to college, assumed she couldn't do  things, and told her that her own perspective about herself was wrong.  I don't see how any of these things are particularly empowering.

More than two thirds of this book (about 25 chapters) are from Matthews perspective.  Amy's remaining 13 chapters (less than one third of the book) are often rife with ableism and misinformation.  What we do get of Amy's perspective is often all about Matthew or completely void of anything personal to Amy.  There are only two chapters of 38 that really show us any of who Amy is as a person.

ABLEISM:

Chapter 35:

Amy has recovered enough that it looks like she will be discharged from the hospital very soon.  Matthew is there visiting her, and when he hears this, he begins telling her this plan he has come up with (as usual, all on his own, without even talking to Amy about it whatsoever.)  He has checked into them getting an apartment with one of his friends.

When he tells her this, she says no, and says "don't be stupid."  Not the best way to express that she doesn't like his idea.  Matthew gets all offended that Amy doesn't like his idea and she says she's going back to school, to UC Berkley.  Amy having her own plan makes him feel "small and ridiculous."  Then he feels enraged because he feels like Amy used him to "feel better about herself" after the complications with the pregnancy and having her baby.  That once Amy felt good, she would leave again.

I'm encouraged that Matthew doesn't walk on eggshells around Amy.  However, the fact that Amy making her own future plans enrages Matthew?  That's concerning to me.  Of course she doesn't want to drop everything.  She has always been a very driven girl.  Why would she jump at the thought of a plan she was never even consulted about, conceived by an able bodied guy who (while well-meaning) definitely did not think of everything in terms of feasibility.

Even if Amy wanted to live in Matthew's random apartment, and even if it were on the first floor, there would be issues.  I'm sure it's not an accessible building, because most aren't.  That means doorways won't be wide enough for her walker, she won't be able to manage in the kitchen or bathroom alone, etc.

Also, can we talk about Matthew's accusation that Amy uses Matthew to "feel better about herself?"  Because it may well be true.  However, I found it to be quite a bit of the pot calling the kettle black, so to speak.  From day one, Matthew has been using Amy for the exact same reason.  She is a self-esteem boost for him.  If both are aware of this and okay with it, then that's fine.  I just find it interesting that when he gets a taste of what he is doing to Amy it makes him this angry, but he never connects the dots regarding what helping her does for his self esteem.

Chapter 37:

At UC Berkley, one of Amy's favorite classes is playwriting.  She apparently "[can] not get over the miracle of hearing her words read aloud by real people!"  She goes on and on about hearing the lines she writes read with inflection and comic timing, and the whole thing just leaves a bad taste in my mouth.  To me (again) it implies that Amy (with her Pathway) is not a "real person."

To add to this, her playwriting professor seems to talk about Amy to the class rather than to Amy herself.  ("Amy is finding her voice."  "I'd be curious about what would happen if Amy wrote her final one-act on a subject closer to home...")  Why not address Amy personally?  She is right there.

It's also mentioned that Amy likes being a drama major because she "doesn't feel disabled, just eccentric in a different way."  There go my theories and hope that Amy may be able to connect to the disabled community on campus at least somewhat and realize she can take pride in that part of her identity.  I'm glad she feels she fits in with the drama majors, I just wish she didn't feel like she had to sacrifice a big part of her identity to do it.

Chapter 38:

Amy's play is called Alone Together.  It's about a boy with agoraphobia and an able bodied girl, who tries to convince the boy to go out to dinner with her.  Again, mental illness is kept in the play, as Amy experienced it via Matthew, but her own CP is erased.  There is no evidence of even a hint of physical disability in this eccentric female character on stage.

SEXUALITY:

Chapter 38:

Amy says she doesn't think she will ever try dating, because she doesn't see the point, and the book literally ends with Matthew breathing onto her cheek.  He tells her she will be a great playwright one day and will "think of all the right things to say."  Ironically, as he says this he has Amy's good hand in his so that she cannot say anything back.

He's told Amy that his other girlfriend has mentioned she doesn't think Matthew's over Amy yet.  Last time I checked they were hardly romantic at all, definitely not dating.  And just to drive the point home, the book ends with Matthew breathing weirdly onto Amy's face and saying that they should just "have a nice summer."

I suppose, as with all of the important romantic or sexual things regarding Amy we are just supposed to imagine that she and Matthew are in love now, though even at the end of the book, he doesn't kiss her or even let her have an opinion on them being together.

How romantic...  (I hope my sarcasm is clear enough here.)

CLOSING THOUGHTS: 

It was such a letdown of an ending, in a book that I kept hoping would redeem itself - but I stand by my initial assertion.  I hope no one (least of all young girls with CP) ever read this book, because of just how damaging something like this might be for their own self worth.

Thursday, March 24, 2016

AZ Chapman Says: Cerebral Palsy Awareness Month Interview #5

What is the most important thing you have learned about yourself?

That I can  accomplish a lot of tasks.


What is your favorite thing about the month of March? 

It would have to be CP Awareness month.  Sometimes having CP is hard, but having two times a year to celebrate reminds me that there are gifts that come with it.

What is your favorite thing about yourself relating to your disability?

I love the connection it gives me to other people with disabilities.  (Not just CP, but other diagnoses  as well.)

How do you deal with people's invasive questions, comments, or stares?

Well, I have mild CP so I do not get stares  that often.  For questions I just say that I have CP, so that is why I talk funny.  Mostly it's kids that ask and I  am fine with their questions.

What is your favorite song?

 I like You'll Be in My Heart from Tarzan.  I also like the Beatles and Billy Joel.  I really like uplifting, positive songs.

What is one thing you want people to realize once they meet you? 

How smart I am.  I have trouble  saying my real name.  Everyone knows me online by  AZ Chapman,   but my real name is hard for me to say.  I want people to  know that just because I talk differently does not mean I am not intelligent.  I graduated from community college with honors and  will get my BA this June.  But people  assume  because I have trouble  speaking that I have trouble learning which is not the case.

Do you have a role model or a favorite celebrity in the disability community? If so, who are they, and share a little about them.

I really like disability  activist, Norman Kunc.  He is funny and intelligent and gives talks about inclusion.  Definitely want to meet him one day.

 Have you ever watched TV, movies or a music video and thought, "That person's just like me!"?  What was the show/movie/video?  Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

 I am mixed (Black, Mexican and White)  and do not use adaptive equipment so  I rarely see people that look  like  me.  However, sometimes   I can relate to other  able bodied characters.  A few years ago, I  joined a Facebook group of people with CP and from there met a ton of people with CP.  It was nice because those are  my peeps.

What is your favorite piece of adaptive equipment and why is it your favorite? (Wheelchair, walker, crutches, etc,) (Can be yours or someone else's.) 

 I do not have adaptive equipment, but  I do like my Pulse pen that I use to take tests.

What is your favorite scent? 

Perfume, or the scent of my favorite people.


***

{Image is AZ Chapman
seated and smiling at
the camera.  A small
white dog is off to one side.
Photo credit:
AZ Chapman}





Connect with AZ Chapman at AZ is Amazing

Monday, March 21, 2016

Denise Says: Cerebral Palsy Awareness Month Interview #4



What is the most important thing you have learned about yourself?

It's not an easy answer.  It's a multi level answer. I learned about myself that I am just like everybody else but I do things differently, and that over the course of time, as I've grown up, that it's okay to be me.  I have to do things differently.  From high school on, I was integrated, but because of the fact that I can only use one arm, that kind of put a different spin on things.  Over the course of 56 years, I've learned that people don't always know how to interact with me, but that's okay because I'm learning, too.

What is your favorite thing about the month of March?


It's spring time and a new season.  It's also my birthday.  


What is your favorite thing about yourself relating to your disability?


The fact that I'm not afraid to put myself out there.  Do different things.  Interact with people.  Not only am I letting people see what's inside with regard to my intellect, but I'm letting people know that it's what's inside that counts.  People realize, after speaking to me a few minutes, that I'm on the same intellectual playing field that they are.  By looking for opportunities, I find a way to put myself out there.  Because where one door closes, another one opens.


How do you deal with people's invasive questions, comments, or stares?


I'm so used to being disabled that when people look at me, I don't even think about it as a stare.  It's what I'm used to.  If it's a little kid, I'll answer their questions.  I think it's just a matter of me informing individuals, and wherever I can do that, that's fine with me.  

What is your favorite song?


My favorite song is Hero by Mariah Carey.  The reason why it's my favorite is because it talks about relying on yourself and believing in yourself, when other people may not.  


What is one thing you want people to realize once they meet you?

That I'm just like they are!  And yes, my experiences made me a little bit different, but I'm just like they are.  

Do you have a role model or a favorite celebrity in the disability community?  If so, who are they, and share a little about them.

I have two.  One person, his name was Ed Roberts, and he began the independent living movement in the '80s.  Independent living centers are non residential agencies where disabled people can go to find out information and get assistance to get as independent as they choose. The staff at independent living centers can also teach the person with the disability how to advocate for themselves.   

Also, the show Push Girls.  I think they show a good example of what it's like to be disabled.  And I met two of them.  I met Auti and Chelsie.


Have you ever watched TV, movies or a music video and thought, "That person's just like me!”  What was the show/movie/video?  Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

One of the people on Push Girls. Her name was Angela, and she was totally dependent on other people.  I could totally relate to that.

What is your favorite piece of adaptive equipment and why is it your favorite?  (Wheelchair, walker, crutches, etc.)  (Can be yours or someone else's.)


The only piece of adaptive equipment I use is my wheelchair because it gets me where I need to go.


What is your favorite scent?

Anais Anais perfume.  It's a light, floral scent.



I have some advice for parents:


You're going to be the most creative part of your child's life.  You're going to know what they can do and what they can't do.  Just look at their abilities.  Don't let the preconceived notions of what your child can do or can't do, stop you.  It's by being creative and thinking outside the box that things happen.  Don't be limited by that.  Don't limit them.  By the time they're older, all this new technology is going to be out there.  

Whether your child is going to live on his own or whether he's going to live in a group home, when that child turns eighteen, make sure he gets on the list right away.  That way housing won't be nearly as big of an issue.  The same goes for group homes.  If you're child has to live in a group home, get his name on a waiting list.  You can always say no, if you're not ready.  


***

{Image is: Denise in a white shirt
with pink flowers, smiling.
Photo credit: Denise} 



My name is Denise and I have lived on my own since I was nineteen years old.  I am a life coach.  I help people go from where they are now, to where they want to be by taking the small in between steps to get from one place to the other. If you need guidance in finding resources, I may be able to help. Or if you would like to take advantage of my free coaching, contact me at prettywheels53546@gmail.com 

Saturday, March 19, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 31-34

ABLEISM:

Chapter 31:  

Amy thinks about the first time she walked without her walker.  She remembers that she was eight years old and furniture had been spaced throughout the room so she could walk unassisted.  Her mother had made her favorite dinner and Amy was hungry.  Her mother urged her to "come to the table" and Amy had taken five steps of the six to the table before falling down.  Her mother picked her up and was happy she took those steps by herself.

Amy thinks to herself:  "How could she hate someone who had spent her whole life ensuring that Amy had one?"

This just frosts my cookies.  It's not bad that Amy's mom encouraged her to walk to the table, nor that she praised her afterward, but what irks me is just how poorly this segment is done.  Because it completely ignores the fact that Amy's mother has raised Amy to hate her CP.

There are so many other examples of actually harmful things that Amy's mother has done that could have been used to either demonstrate the long term damage to Amy's self esteem or that are used to illustrate Amy's unconditional love for her mom.

Also, the insinuation that without her mother, Amy wouldn't have a life is just offensive to me.  Amy feels indebted to her mother for, what?  Not institutionalizing her?  That's a pretty low bar.

Chapter 32:

After Amy's baby is born, Amy says she "shouldn't hold her" because she "might hurt her."

This is a common feeling in mother's of preemies from what I understand.  But I can't help but get the feeling that Amy's talking about her own CP and how it is dangerous for her to hold a baby because of that.  The reality is, this book is set in 2014, there are plenty of nurses and doctors around to ensure that if Amy wanted to hold the baby, she could do so safely.

I don't like the implication that we are dangerous.

Chapter 33:

After the baby's birth, Amy has people lifting her "poor, crampy legs" and wiping them down.  She thinks about telling people: "I'm a failure!  My body failed me!  It always does!"

Again, I get that she's post birth right now and very emotional but the level of internalized ableism here is stunning and gross.

Chapter 34:

Matthew is hanging out with Amy after the baby is born and he says he feels like he "always wants to be here.  Helping.  I feel like this should be my job or something."

Wow.  Way to make Amy feel awesome about herself, Matthew.  You don't want to be with Amy because you like her company or you love her.  You want to be with her because you want to help her.  So, she's pretty much an obligation to you.

SEXUALITY:

Chapter 34:

While recovering after giving birth, Amy tells Matthew "I wish I could feel your body on top of me."

There are pages and pages of Mathew balking at this and finally agreeing.  Amy says she couldn't take her clothes off or anything but she just wants to lie there with him.  So they do, and eventually he kisses her.

How maddeningly chaste and desexualizing.  If Amy were able-bodied you know Matthew would be all about being close to her.

Thursday, March 17, 2016

Alyssa Says: Cerebral Palsy Awareness Interview #3

As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP.  (My own interview will be posted at the end of the month.)  I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP.  I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.

Next up, my friend, Alyssa:

--

What is the most important thing you have learned about yourself?

Learning to believe in myself and my own choices as a person. 

What is your favorite thing about the month of March? 

My favorite thing about the month of March is knowing that winter is almost over and warmer weather is coming. I also really enjoy St. Patrick’s Day and shamrock shakes from McDonald's…haha

What is your favorite thing about yourself relating to your disability?

 I love that my disability has shaped my personality and made me who I am. I love being in my wheelchair when I go to concerts and collecting band stickers to decorate my chair with. 

How do you deal with people's invasive questions, comments, or stares?

For questions or comments related to my disability, I like to make very sarcastic remarks when possible or tell them “That’s none of your business."  As for the stares, it depends on who is staring. If it is a very young child, I just smile and try to start a conversation. They will usually ask me about my disability and I answer questions for them. Older people, I tend to just ignore them at this point.

What is your favorite song?

Missing You by Set It Off. I can listen to this song on repeat for hours and no matter how many times I’ve listened to it I still manage to find new melodies  and sounds in it that I have never heard before. There are so many layers to the song. It is beautiful. 

What is one thing you want people to realize once they meet you? 

I want people to realize that my disability isn’t some scary thing that they need to be sorry for and it does not limit who I am as a person. If anything, it has made me who I am and I’m proud of that. 

Do you have a role model or a favorite celebrity in the disability community? If so, who are they, and share a little about them.

Growing up, I really looked up to Hellen Keller. I can’t exactly remember why now, but she was the first person I was ever introduced to that was different like me and I fell in love with her story. It amazed me that she was blind and deaf. At such a young age I was shocked to think that someone could have two disabilities at the same time, and that really interested me. I loved how everyone thought she was this hopeless wild child, but then she grew up to be this smart woman who everyone knew. 

What is your favorite piece of adaptive equipment and why is it your favorite? (Wheelchair, walker, crutches, etc,) (Can be yours or someone else's.) 

My favorite piece is my wheelchair (even though I use several different pieces in different situations.) My wheelchair makes me feel strong and limitless! I can keep up with my friends easier and not have to worry if I will have the strength to walk or stand for any amount of time. I don’t have to think about finding places to be able to rest. I can just go! My wheelchair also makes it easier for me to do simple tasks like carrying items and opening doors.

What is your favorite scent? 

My favorite scents are citrus and coconut. I love the smell of lemons!


***

[Image is: a black and white photo
of Alyssa smiling.  Photo credit:
Alyssa]
My name is Alyssa and I was born with Cerebral Palsy. I cannot remember a time when I didn’t realize I was different or disabled. I’ve always seemed to make it a part of who I am even the ups and downs that come along with it. I am a very passionate and bubbly person and a little silly at times, but I love who I am. I spend a lot of my time going to concerts and painting and drawing. Art and music are a big part of my life and how I define myself outside of my disability.  Connect with me at  Not Different, Just Me.

Tuesday, March 15, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 29-30

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 30:

Amy experiences pretty intense complications with the pregnancy which leave her hospitalized and at risk of delivering the baby prematurely.

The author paints a pretty grim picture of people with CP getting pregnant.  That if we do, we'll make babies as disabled as we are, and that getting pregnant is extremely high risk for us.  People with CP can get pregnant and have babies.  Most babies with CP actually have able-bodied parents, not parents who also have CP.

ABLEISM:

Chapter 30:

Matthew's perspective tells us this is a "cruel irony: delivering the baby to save Amy's life could leave the baby as disabled as the mother whose life was being saved.  Whose life was worth more?  Which risk was worth taking?"

Let's talk about the fact that Matthew is legitimately musing about how tragic it is that Amy might have a baby with CP.  That this causes him to ask, "Whose life is worth more?"  To me, that implies that he finds very little value in both lives.  Of course he likes Amy as a friend, but if this were an able-bodied mother with pregnancy induced high blood pressure, this decision would not be steeped in a sense of doom or pity because hospital staff would do what they could to save both lives, because that's the answer, Matthew.  Both lives are worth saving.

Later, he continues his tactics of old, snooping in Amy's emails via her Pathway, while she is asleep.  He reads an entire file of unsent emails to him and then goes home to write her back, telling her that sometimes she hides behind her disability, too.

First of all, Amy's Pathway is a communication device, not just something you can randomly take and use under the guise of "checking your emails" while Amy's asleep.  Secondly, seriously, where do you get off reading her private messages?  There's a reason she never sent them to you in the first place!

Eventually, Amy has sought out potential adoptive parents to take her baby once its born but as she is hospitalized, she sends Matthew out to update them on the baby's probable early birth and complications.  Matthew does this for Amy because he recognizes how difficult it would be for her to ask them: "If my baby turns out like me, would you still want her?"

Thankfully, the parents do still want her, but again, we have all the able-bodied people in Amy's life swooping in and being very capable and intelligent, where Amy's not even able to make a phone call about her baby's future?

Also, while I respect a mother's right to choose adoption for her baby, I can't help but feel that a lot of internalized ableism is leading to Amy's own decision.  She doesn't want to "burden" her own family (or any family) it seems, with a medically fragile baby who could end up disabled.

Monday, March 14, 2016

Emily Says: Cerebral Palsy Awareness Month Interview #2

As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP.  (My own interview will be posted at the end of the month.)  I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP.  I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.

Next up, my friend, Emily:

--

What is the most important thing you have learned about yourself?

The most important thing that I have learned about myself is that I'm strong. I'm definitely a lot stronger than most people realize. (Including myself.) As long as I believe in myself, I can do anything. 

What is your favorite thing about the month of March?

My favorite thing about March before I got a Tumblr was that it's one month away from my birthday month. But now, my favorite thing about March is that it's Cerebral Palsy Awareness Month. I love educating people on Cerebral Palsy, because I'm hoping that if I can educate just ONE person, that someone out there won't have to go through all of the crap that I've been through. 

What is your favorite thing about yourself relating to your disability?

My favorite thing about myself relating to my Cerebral Palsy is the positive attitude that I have about my disability.   I take all of my experience and knowledge, and I use it to help other people with my disability. I don't let my disability run my life. I can do anything I set my mind to. My disability will never keep me from doing anything. 

How do you deal with people’s invasive questions, comments, or stares?

Oh goodness. If I'm being honest, I sometimes don't deal with people's questions, comments, and stares very well. People are always going to stare, I've accepted that, and it doesn't bug me nearly as much as it once did. Although I do tend to get very self-conscious especially if I'm out by myself, and the majority of the time it ruins my mood/sometimes my entire day.  The people who ask questions don't bother me at all. I would rather you or your child come walking up to me and ask me questions than point and stare at me. At least if you come ask me questions, I am given the chance to educate you on my disability. I never handle people's comments well. Ever. Especially when they tell me I should be doing something differently, or they decide to come pray over me so that God can "heal" my legs. Last time I checked I wasn't broken.  And honestly, I still haven't figured out what to say to those people yet. 

What is your favorite song?

My favorite song is Stand by Rascal Flatts. 

What is one thing you want people to realize once they meet you?

The one thing that I want to convey when I meet someone is that I'm NOT just my disability, I'm so much more. I don't ever want people to think that my disability is my definition. I want people to get to know me as a person, to see that I'm really smart, I'm kind, and that I have amazing qualities that they're missing out on if they focus solely on my disability. 

Do you have a role model or a favorite celebrity in the disability community?  If so, who are they, and share a little about them.

John W. Quinn. He was born with Cerebral Palsy, and he was a senior chief petty officer in the United States Navy. He kept his disability a secret for 20 years. 

Have you ever watched TV, movies or a music video and thought, “That person’s just like me!”?  What was the show/movie/video?  Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

I've never seen someone like me on television, or in a movie. And, if I'm being honest that's incredibly frustrating. I wish that people with disabilities were portrayed all throughout the media, because maybe then society would have a different outlook. I think the moment that made me feel the most heard, and validated was when I got a Tumblr. I used my blog as an outlet, and I constantly talked about my disability... the good, the bad, and everything in between, and I realized that I wasn't alone. It made me feel really good to know that other people were going/ had been through the same struggles that I was going through. 

What is your favorite piece of adaptive equipment and why is it your favorite?  (Wheelchair, walker, crutches, etc,)  (Can be yours or someone else’s.) 

I personally don't use adaptive equipment so I can't really say that I have a favorite. However, I absolutely LOVE all adaptive equipment because it gives the person who uses it an incredible  sense of freedom and independence that they never had before the adaptive equipment. I also love that your adaptive equipment can be personalized; because that means the user can express themselves in some way, or show a little bit of their personality.  

What is your favorite scent?

My favorite scent is anything vanilla. I love classic scents. 


***

[Image is: Emily, smiling
slightly at the camera.
Photo credit: Emily]
Hey y'all. My name is Emily, I'm 23 years old, and I live in Georgia. I was born several weeks premature, and when I was 18 months old, I was diagnosed with Cerebral Palsy. Luckily, I was blessed with the best parents in the world. My life would have been so much different if I were someone else's kid. Four years after I was born, my mom had my little brother. He also has Cerebral Palsy. It's incredibly rare for siblings to have Cerebral Palsy. My brother and I aren't just siblings, we're best friends. Although we have completely different levels of Cerebral Palsy, and different experiences when it comes to our CP, it has made us incredibly close. I don't let my Cerebral Palsy keep me from doing anything. I can do anything that anyone else can do. Anyway, that's a little bit about me. If you want to know anything else, or you just want to be friends, I've also included the link to my Tumblr: Bright Eyes and a Smile



Sunday, March 13, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 25-28

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 25:

Amy and Matthew are hanging out at her house again.  She navigates through the house without her walker, with the aid of furniture spaced out so she can catch her balance on it.  After this, she gets to the kitchen and sits on a barstool at the counter.

Now, I have sat on barstools myself, but I can say confidently that if I have a choice between sitting on a stool or sitting on a chair with a back, I'll choose the chair.  Amy, in particular, seems to have some intense balance and spasm issues.  I doubt very much that she would feel comfortable and confident on a stool, especially if she could have chosen to sit in any of the living room chairs or the kitchen table.

It seems near impossible that she could safely sit at the counter, and be able to carry on a conversation.  I know I would be distracted the whole time, thinking about keeping my balance, keeping a grip on the counter and hardly being able to multitask in any way whatsoever.  But Amy somehow manages to miraculously keep her balance without hanging onto the counter, because she uses her good hand to type on her Pathway.  It just doesn't make logical sense to me.

Chapter 26:

Once school starts, Amy emails Matthew to update him about where she is living in the Stanford dorms.  She says she lives in the only accessible dorm, right next to the infirmary.

The thing about this is, based on other reviews I've read, Stanford actually is quite accessible, so the chances of her being put in a dorm cut off from everyone else are very slim.  Definitely read the "College" section of the linked review for more on why Amy's entire college experience was unrealistic.

Chapter 28:

Continuing with the college inconsistencies, we have Amy's parents apparently speaking to the housing people at Stanford and somehow convincing them to disregard Amy's actual application for a dorm room.

This would never happen.  Amy is an adult and colleges don't often rejigger a student's place of residence just because their parents' say so.  This seems to me, to be yet another excuse on the author's part to cage Amy into an untenable living situation.  (Despite the fact that the college campus in question is actually awesome and accessible.)  There is no reason to paint her experience here as so tragic and isolating.  Except that the author seems determined to use Amy as a plot device to further the story, rather than a full-fledged character, with desires and power over her own life and circumstances.

The isolation is so complete that the author says the only people who hear Amy speak are often the PCAs that come "in the morning and evening" to help her with personal care.  (What about the rest of the day?  What about when she has to use the restroom?)  The author talks about them being the only ones who hear "Amy" speak, and later in the same sentence describes the Pathway's "humanoid voice and amazing capabilities."

My CP doesn't affect my ability to speak, but I do use adaptive equipment.  I used it in college.  And using my wheelchair was not impacted negatively if able bodied people didn't notice how cool it was.  It's how I got around.  Likewise, Amy's Pathway is her voice.  It's separate from her, and yet it isn't.  The obvious separation is another indication of little to no input by a person with CP.

Still later in the chapter, Amy leaves school and moves in with a friend's father (ironically, the teacher who kept her out of the science fair as a middle schooler, because of his ridiculous ableism.)  But now he is a lovable character who inexplicably offers to house Amy and calls her brave.  I think one able bodied savior is enough in this text, but apparently it isn't.  The author seems to believe her book needs more.

ABLEISM:

Chapter 26: 

Amy emails Matthew after she divulges she has had sex with Sanjay and he left, upset.  Amy tells Matthew she feels like he "hides behind his OCD sometimes."  She says he should "consider the self-indulgence of his illness."  Later, she says she is "looking at crazy people and wondering if that's what [he] looks like these days."

Really, none of this is okay.  Just because Amy can't cope with the fact that her actions have consequences does not mean it's ever okay to insinuate Matthew can control his OCD when he feels like it.  That he is selfish for having it or that he is "crazy" now.

Chapter 28:

Amy has managed to make one friend on her college campus, who shares his favorite story with her, about a monster who lived in isolation, unaware of his true form until he went out and repulsed everyone.  Amy confronts this "friend" and asks him if she is like the monster.  He says no, but she counters there are "similarities."  She says that because she ventured into the world and her friendships didn't last she "discovered the extent of her own freakishness."

Okay, seriously.  This insinuation that Amy is some kind of monstrous creature needs to stop.  Being disabled isn't repulsive or frightening and I resent the strong implication that it is so, especially giving Amy this point of view in the chapter!

Later in the chapter, Amy discovers she is pregnant and calls a cab to take her to Planned Parenthood.  I appreciated the fact that Amy was shown to be capable in this instance and also the professional and to the point manner of the staff.  Amy, too, thinks it is reassuring the way she is being related to and that it likely means they have seen a lot worse than "a crippled girl who accidentally got herself pregnant."  Like, why is the C word necessary?  What does being disabled have to do with getting pregnant?

Still later, Amy complains to her parents that no one knows her on campus.  As usual, her mother disregards her feelings.  And then her parents insist that she does know people and name her single online friend, who is standoffish at best.  It turns out her parents orchestrated the whole friendship.  When Amy is rightfully upset, Nicole claims that she is "overdramatizing."

SEXUALITY:

Chapter 25:

Matthew says he knows he's "not supposed to want to kiss" Amy because she "might freak out or it's wrong to want, but I can't help it...I do."

I don't know where Matthew is getting these cockamamie ideas from.  Why is he not supposed to want to kiss Amy?  Why is it wrong?  What makes him think she might "freak out" anymore than the average girl?  This is all just borne from really limited thinking about disabled people.

He goes on to say that they "wouldn't have to have sex or anything," they could just kiss and then she would go away to school and they could do the long-distance thing.  Amy surprises him by responding, "I'd want to have sex."  And that, "I know I'm not supposed to think about sex but I do sometimes, I can't help it."

Again, why does Matthew assume Amy wouldn't want to have sex?  She's certainly talked about it enough.  The last thing she seems to want is some kind of sterile, best friend, long distance thing, with some chaste kiss on the cheek.  I'm glad Amy corrects him, but again, why is Amy under the impression that she shouldn't think about sex?  She's seventeen or eighteen by this point.  Most kids that age do think about it.  Of course, at this revelation Matthew seems about to pass out.

Amy goes on to say that she had sex already because "one of them had to know something about it." Matthew's confused, and Amy clarifies what she meant, but Matthew says "her face didn't match what she was saying.  Did she think this was funny?"

Mathew thinks again that he is scared of Amy's body as it relates to intimacy.  That he can help her when it felt "clinical or necessary" but not "touching just for touching."

Very tiring and angering that this is a persistent issue in the text.  I really don't like that Matthew's OCD is used to legitimize his fear of Amy's body.

Chapter 26:

Amy decides that it is very unlikely that she'll meet someone like Matthew in college.  Who will "look at her the way he has" and who will "not be put off" by her body.  She gives him "credit.  More credit than he'll ever realize."

Why?!  Matthew totally is put off by her body!  Does Amy have so little self-respect that she thinks the way Matthew treats her is really awesome?

Chapter 27:

Matthew continues to dig himself into a deeper hole by telling Amy that "they don't have casual relationships with their bodies."  He uses the words "unpredictable", "humiliating," says their bodies have "failed them" and "made it hard not to hate them."

I just can't with this continued notion of being trapped by disability.  Some people do feel this, but it is supremely unhelpful to have this idea perpetuated by an able bodied author, who has a lack of insight into what disability is actually like for us.

Saturday, March 12, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 21-24

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 22:

Amy's Pathway is incorrectly identified as her "Pathfinder" only two pages from the last, correct reference.  I'm very sure it's not something Amy would confuse, even in her drunk state, post prom.

Chapter 24:

After prom and graduation, when Amy has been forbidden to see Matthew again, she has begun sneaking him into the house while her parents are at work.  They go swimming in her pool.  Well, Matthew does.  Amy is reluctant to rely on him in the pool, which is actually a super true reaction.  But Matthew asks and asks, and Amy declines.  Matthew finally does not wait for a response and picks Amy up from the chair "so fast her body had no time to tense up or flinch."

The lack of consent here is huge.  Not only did Amy not say yes to this, by taking her in the pool Matthew is taking her away from her Pathway and leaving her without a reliable way to communicate.

We also have the fact that the author claims Amy had no time to tense up or flinch.  When you have spastic CP, strong emotions (positive but especially negative) impact spasticity.  If Amy was feeling nervous about going in the pool with Matthew (which she clearly was) her spasticity would have kicked in before he even picked her up.  There is no way her legs would remain tension free here.

ABLEISM:

Chapter 21:

At prom, Matthew is musing about Amy's body and how he has finally let himself look at it for the first time.  He is shocked that she really is beautiful.  He knows Amy's feet are her "most despised" body part "because they keep her from walking better."  He says he hadn't minded the one time he had "held her strange foot in his hand."  Seriously, Matthew!  She is a human being, not an alien.  Get it together...

Matthew is also uncomfortable with Sanjay's plan to use Amy's walker to smuggle Vodka into prom.  Matthew asks if they have to drink and Amy jokes that she is "only a conduit." Having remarks like this come from Amy who has CP, it somehow makes it seem okay,  Amy seems so naive, while Matthew is cautious and aware that it's not a good idea.  So we see that the "able bodied savior" trope is still hard at work here.

More evidence of the above is seen when Matthew secretly checks out Nicole's instructions for him.  He says surely Amy's mom could understand how this could be "hurtful" because she is implying that he is taking Amy to prom as a part of his job.  Amy remains passively aware of her mother's doings and not bothered.

Chapter 22:

Amy gets super tipsy at prom and ends up nearly falling over.  Her Pathway (AAC device) gets loose from her walker and dangles.

Sanjay helps her to a table, and then another boy asks if he can finish off the Vodka in Amy's walker.  He doesn't wait for her to respond, just takes her walker and fills up.

When he puts it back, her Pathway is still out of her reach.  She's afraid it's gotten Vodka on it, and tries to tell someone so they can secure it again.  Instead, they can't understand her and assume she is "freaking out."  They tell each other to go get Sanjay.  One asks what Amy's name is again and the other says, "It doesn't matter.  He'll know who you're talking about.  Just go."

As a person with CP myself, it seems unthinkable that Amy would choose to let her walker be commandeered for booze-smuggling.  Something that poses such a risk to the equipment she needs to get around.  By extension, it puts her Pathway at risk, too.  Perhaps she is less worried about her equipment because money has never been an issue for her family and so they could easily replace whatever is damaged, but that would still leave Amy in a vulnerable position until one or both her walker and Pathway are replaced should they be permanently damaged in this fiasco.  The people around Amy don't treat her as an equal at all, or even a person.  No one tries to understand.  No one even knows her name.

Sanjay takes Amy home and her parents take his account of the night over Amy's, wanting to believe the lies Sanjay tells about how many people at prom "talked" to Amy.  He has pictures on his phone of all the popular kids (actually filling up from her walker) but when photographed it looks as if they are actually talking with Amy.  When they arrived, Amy's mom and dad "greeted Sanjay like a hero" and "offered him champagne."  Amy is all but invisible in this portion of the text.

SEXUALITY:

Chapter 22:

It's heavily implied at the end of this chapter, that Amy and Sanjay have sex.  Amy has talked about sex off and on over the whole course of the book so far.  We know it's very important to her.  I think it's safe to say, if she were able-bodied we would see more of this encounter.  As of now, we see none of it.  Usually, scenes revolving around sleeping together are at least covered a little bit, but we don't even see Amy and Sanjay making out.

For a book that claims to be specifically about breaking down stereotypes around disabled kids and sex - specifically, that disabled kids are not interested in it - this plays into another damaging stereotype.  That we can have sexual relationships, but no one should see them or read about them.  It goes right along with the disabled body being seen as undesirable.

Also, we know, based on what happened at prom that Amy is drunk.  This is an issue because a drunk person cannot consent to sex.  So, Amy's first sexual encounter is not only off-page but also one where she cannot consent because her judgment is impaired.

Finally, apparently her parents sleep like the dead because there is no way they would be unaware that she and Sanjay are doing the wild right in her bedroom.  How clueless are they?

Chapter 23:

Amy and Matthew are exchanging angry emails about the fact that Amy went home with Sanjay after hearing that Matthew wanted to give another girl a ride home.  Amy says that she "had to assume that all of [Matthew's] gestures...aren't meant romantically.  How could they be when neither one of us knows what my body would do in such a situation?"  She finishes by saying that if she really is his best friend and wants what's best for him, she has to assume it isn't her.

There are so many issues here, I don't know where to start.  Amy has so little confidence in herself that she just figures that of course his kind gestures were not meant romantically.  What does that have to do with what her body might do in the bedroom?  I'm just so confused. And why wouldn't Amy be "good enough" for Matthew?  I understand there are self esteem issues at play but this just does nothing but play into the assumption that disabled people are broken and insufficient because they are disabled and people obviously wouldn't be romantically interested in them.

The whole tone here is so ableist, it's ridiculous.

Friday, March 11, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 17-20

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 18:

Matthew asks Amy to prom, after she all but prompts him to do so.  That night, she has an elaborate fantasy about being transformed by the dress and the dance - being able to smile for a photo when the photographer asked.

Maybe I am just bitter, but growing up with CP is a reality for those of us with it.  I know that I, for one, never fantasized about being nondisabled because having CP was normal for me.

The fact that Amy fantasizes this way is the result of her being written by an author who is able bodied, and likely, with no direct input from anyone with CP, during the writing process.  Fantasizing about being able bodied while disabled is something able-bodied people turned disabled might do, but most likely, not those of us who have been disabled from birth.

ABLEISM:

Chapter 18:

In chapter 18, we have another reminder of just how affected Amy's face is by CP.  She stands in front of the mirror trying to mimic the pose and facial expression of a model she has seen in a magazine.  She says she only has about three expressions to convey every possible emotion, and none of them are subtle.  The only exception, she says, is a picture her parents had taken of her while she was sleeping, so it looked "like she didn't have CP at all."  She wonders why that's possible while she sleeps and not when she is awake.

You can't tell me that Amy is that clueless.  Living with spastic CP you learn pretty quickly that the spasticity releases when you relax.  When we sleep, we are most relaxed, so it makes sense that her face would as well.

She wonders why her parents get school pictures of her when they show her "inability to smile."

Again with the totally limiting commentary here.  If Amy has hemiplegia, that means half of her face is unaffected.  That half of her face can smile and likewise, should be able to convey more emotions than she claims she can.  I'm just confused at this persistent aspect of the storyline.  When I would think that having grown up as she has, she would be used to her face.  Yes, it's different from her peers', but I would expect this level of insecurity in a younger child - say nine to eleven years old - or someone who has sustained a brain injury later in life and had to adjust to a difference in her face and body.

Chapter 19:

Matthew arrives to take Amy to the prom and receives a list of instructions from her dad, written out by her mother.  This list is given to Matthew completely outside of Amy's presence.  Amy's father jokes they will just need an hour to take pictures and then the two are free to go.  Matthew figures it is a joke because Amy's parents take no pictures of their daughter on prom night.

Reading that, I felt incredibly sad.  I don't know any parents who don't happily photograph their children before going to a special event, especially prom.  I feel like, if Amy were able-bodied, there would be no question whether there would be pictures taken, especially with both parents home, and Amy looking as lovely as she did.

Matthew tells Amy about a dream he's had where they were swimming together and Amy swam "perfectly."  And that the only thing Matthew wanted to do in the dream was "stay close" to Amy and "get stronger" himself.  He thinks the dream is about how strong she is and how much he has gained from being around her.

I feel like that, more than anything, is really a comment on some nondisabled people's experience of disabled people.  We seem to exist for them.  To teach them lessons or make them stronger people.  To some of them, our life does not have inherent value on its own, only as it relates to them and their experience of us.

Chapter 20:

We are back to Amy, getting ready for prom with her mother, when Nicole tells her they don't want her seeing Matthew over the summer.  Amy assumes this is because Matthew isn't going to college.  Now, maybe Amy's mother would do something like this, regardless of Amy's ability level, but Nicole seems quite used to making decisions for Amy without talking to her first, despite the fact that she is very nearly an adult, and should be able to make the call about who her own friends are, assuming they are not actively putting her in danger.

We also learn that Sanjay (another one of Amy's peer helpers) has come up with a way - don't ask me how - to stash "a quart of booze in her walker so they could sneak it into prom."  Apparently Sanjay thinks this would all be "very funny."  This is an example of someone quite literally using Amy as an object.  The fact that Amy goes along with this is even more abhorrent - though a part of me does understand that desperation for acceptance - at any cost.

I'm honestly wondering how Amy, who struggles to use her walker on her best day, manages to use it with no one the wiser when it is "two quarts heavier."  She uses it for who knows how long before prom, already all filled up with Vodka.  How is she not exhausted?  How does no one smell the Vodka?)

Ironically, Amy's mother would rather she go to prom with Sanjay because "he has a good head on his shoulders" and because "he doesn't need your help or your pity."

My mind is blown.  If Amy's a caricature, at this point, so is Nicole.  She is beyond clueless and just operating out of who knows what instinct.  It's ridiculous.  Later, at prom, Sanjay wants Amy "hidden for a little bit" and places her behind a potted plant so that no adults will catch onto what they're up to.

SEXUALITY:

Chapter 18:

Amy is looking at a fashion magazine and opens it to the picture of a model.  Matthew says Amy is a lot prettier.  When Amy presses, asking what Matthew is interested in - as he says he is not into too much make up or too little clothing - he says "Their soul, of course."

Of course, Matthew would rather be interested in Amy's soul.  He is petrified of her body.

Chapter 19:

Matthew has a dream about swimming with Amy.  She's not wearing a bathing suit in the dream, but he insists the dream is about how they are good friends.  He can't explain why she was naked in the dream, and rejects it when Amy tells him water actually symbolizes sex in dreams.

God forbid, Matthew's subconscious mind might actually be telling him he is attracted to Amy.  Much safer to "just be friends" with the disabled girl...

Thursday, March 10, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 13-16

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 13:

Matthew brings up how Amy has never been away from home and the one time she was (at a camp for disabled kids) Amy apparently hated it and found she had little in common with her peers.  She stayed in her cabin and slept the entire time.

 I think the fact that Amy can't/won't relate to disabled peers doesn't do her any favors.  Speaking from experience, going to camp for disabled kids changed my life because it was the first time I got to be around others who were like me and I didn't feel different.  Did I become best friends with everyone?  No.  But I did make a small group of close friends and we got cabins together for the next two years.  I am still in touch with them, 20 years later.

For the author to make a conscious choice to have Amy alienated from her fellow disabled peers is really a disservice to her as a character and I feel like it may send the wrong message to young girls with CP who read this book and feel like they will also have nothing in common with their disabled peers either, when in reality, camp can be the first place they feel totally accepted and normal.

ABLEISM:

Chapter 13:

Here, the discussion of college plans comes back up.  Matthew finally tells Amy he assumes she isn't applying to colleges and Amy is confused because her mom talks about Amy going to college all the time.  He tells Amy he thinks her going to college and living in the dorm is "naive" because "people in college are more self-absorbed."  He also remarks silently, "Did she need him to spell out all the ways this could be a disaster?" and "Should he remind her of all the things people did for her?"

Um, no, Matthew.  You shouldn't.  Because guess what?  Amy can actually go away to college and live at school with accommodations.  Weird!

Still, Matthew persists, asking Amy if she has made it clear to the people at Stanford all the things she needs help with.  Amy doesn't put up with the line of conversation and tells Matthew it sounds like this issue is about him, not her.

Chapter 15:

At the end of the previous chapter, Amy finds out she has been accepted to Stanford.  The reaction to her acceptance is positive, but also over the top.  When Amy receives an email that the school paper wants to do a story on her, Amy writes back that she isn't sure about that because lots of people are getting their college acceptance letters and it isn't that big a deal.  The next line says "But it was."  The chapter goes on to say how Amy's mom has talked to a local TV station who wanted to do a story about Amy.  Her mom says yes without even asking Amy.  When Amy challenges her on that, Nicole says, "Of course I did," and "This isn't just about you."  She tells Amy she is a role model for all disabled kids.

Um, did Amy ever ask for that?  Did she want to be the poster child for all the children ever in the world with CP?  Based on her reaction, I don't think so.  Her mom doesn't even think to ask if it's okay with Amy to be featured on the news, she just has to do it anyway.  Amy feels that she would like to be an inspiration to the disabled community because she doesn't know it well and wants a connection to it.  It breaks my heart because instead of having Amy be objectified for inspirational purposes, Amy could allow herself to really forge a connection with that community either through summer camp or even online.  Without it she is very much isolated.

Chapter 16:

Matthew mentions that "thank heavens Amy looked more like her real self and less beautiful on TV" and goes on to describe how her "mouth fell open and her head wobbled."  Why are lines like these necessary?  I mean, really?  We already know Amy has CP.  We already know Matthew apparently can't reconcile the idea of someone who is both beautiful and disabled (so, I guess it makes sense he would be relieved that she is less beautiful...)  But it is still insulting.

Later in the chapter, Amy speaks to a clueless book agent, who would like Amy to be the subject of an inspirational book because she thinks hemiplegia and degenerative are the same things.  Amy has to set her straight.  Her mother is forcing her to write back to all of the people who are emailing her about book proposals, etc, even though all they want to do is objectify Amy for their own gain.  It's sickening.

Still later, Amy is trying to help Matthew with his OCD and she tells him she has filled out a job application for him.  

Seriously, Amy?  Excuse you?  I get that your mother does all kinds of things without asking you first but that doesn't mean doing the same thing to Matthew is anymore right.

Wednesday, March 9, 2016

Book Review: Say What You Will by Cammie McGovern: Chapters 11 & 12

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 11:

Amy says she wants to help Matthew with his OCD just to see if she could because she's "never helped anyone before" and it's "awful always being the person who needs help."

This is something I could have put in the ableism section but chose not to because, to me, it really speaks to a deeper portrayal issue and biases the author carries.  People with CP can help other people.

I'm sure Amy's given helpful advice to someone at some point, or recommended something online for someone else.  Help doesn't have to be physical for it to count.  I feel like that's a preconceived notion that a lot of able bodied people have.  And so, too, with the author, perhaps.  She might carry the assumption that Amy has never helped someone else in her life and is this awkward and offensive with Matthew because, in all her seventeen years, she assumes she has never helped anyone.

Chapter 12:

Matthew thinks that it was like Amy was never scared of anything.  He says, her starting school in second grade was "no problem."

Why wasn't Amy enrolled in school in kindergarten? This means she missed fundamental moments in her schooling, which were super focused on socializing.  For a kid born in the late '90s I'd think educational neglect would be on the radars of local schools.  What did Amy's mom do with the kindergarten and first grade open house letters?  Get rid of them?  Assume Amy was smart enough to just be fast tracked into second grade?  Start her student career at seven?  My mind is blown here.

He also says that not being understood until fourth grade was "frustrating but not particularly scary" for Amy.

I'd like to ask him, how do you know exactly?  And does the author get how harmful a characterization like this, of a person with CP, is?  It feeds the ableist narrative that we are emotionless and not human beings.

Continuing in this thread, Amy tells Matthew the story of when she was excluded from the science fair because of a teacher's ableist assumption that she had not done the work herself.  Amy claims it "didn't bother her," though it bothered her mother strongly enough to complain because if not the teacher would "continue to exclude every disabled kid coming up behind Amy."

ABLEISM:

Chapter 11:

Amy wants to help Matthew with his OCD by giving him "assignments with just enough germ exposure to make him uncomfortable."  She then proceeds to talk to him about period stains, which is quite personal, and gross.  Doing this to intentionally trigger his OCD in order for him to "get better" is not that far from the way Amy's mother raised her, with all of her ableist demands.  It makes me cringe, though, because no one likes to feel like someone else's project to fix.

Matthew says as much and Amy says she "hates herself sometimes, too" that she feels stupid since other people can talk and she can't.  She also insists that she is not fixing Matthew, she says she's "helping" him, and isn't that the way a lot of ableism masquerades?

Chapter 12:

Amy shares with Matthew that her mom made her practice walking "four or five hours a day through the first six years of Amy's life."

Does that sound excessive and exhausting to anyone else?  Maybe not to the average toddler, kindergartener or first grader, but when it's a skill that she has to work so hard for, it's beyond a mom wanting what is best for her child.  You wouldn't make an able bodied child practice a skill that took them five times the energy it took you for five to six hours a day for years, would you?  No, because that sounds totally unreasonable.

I'm not saying kids with CP don't need to exercise and maintain mobility etc.  But if it takes us five times the energy to do something an able bodied person does, no sweat, wouldn't it make sense to practice, say, ten minutes at a time, three times a day.  That's half an hour a day, which is the recommended amount of exercise for the average person.  Five to six hours just feels incredibly excessive.

Amy says she "doesn't approve of everything her mother does," but she taught Amy "not to be afraid of hard work," and that it's "supposed to be inspiring."  What?

This next part is the single part in the book that made me shocked that this book was ever printed and okayed for a young audience:  Matthew then remembers another story Amy has told about her mom.  Doctors told her Amy would never learn to "walk, talk, or lift her head."  So Amy says her mom "put me face down in the bathtub with about an inch of water in it" when she was five months old.

 Matthew points out that she could have drowned, and Amy says: "But I didn't!  I learned to lift my head."

I have no idea how something like this is framed as even remotely okay.  Like, it's fine that her mom put a medically fragile five month old (so, about the age and size of a three month old, given her prematurity) with an unreliable airway face down in a tub with an inch of water in it.?  No!  It's chilling.  It's scary, and shocking.

But Amy, with her one-dimensional characterization just says it made her learn to lift her head. Pretty sure there are so many other ways to teach your baby this skill, Nicole.  Teaching her motor control should never endanger her life.

In all the reviews I have read, no one has ever mentioned this excerpt, which is so troubling to me, because once I read it, I could never forget it.  It chills me, and even more so, that it is ultimately framed as something so positive.  This is nearing the worst possible ableism there is and Amy is totally fine with it.

Tuesday, March 8, 2016

Book Review: Say What You Will by Cammie McGovern: Chapter 10

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 10:

Amy has decided to join Public Speaking, and says that the difficult part for her, will be standing fairly still during the speech.  This aspect, I think, is actually incredibly accurate.  What I'm curious about is why Amy needs to stand at all during the speech.  In high school, I used my wheelchair, and during my public speaking class, I took it up to the front of the room and remained in it.  Why can't a chair be moved up front for Amy?

Matthew offers Amy his arm to climb the three stairs to the stage.  Amy thinks that she "could have walked up alone."  How, exactly?  Last time I checked she is only able to take a few unassisted steps before grabbing onto something.  Add in the nerves she must be feeling and her spasticity would be kicking in hardcore right about now, and requiring that she at least use her walker, and would struggle, even still, to walk with Matthew's arm for balance.

When she gets to the stage, she stands behind a lectern, "holding both sides for balance."  That seems like a sure fire way to face plant to me.  A lectern is not steady.  Plus, it means putting all your weight ahead of you and between your shoulders.  A walker allows Amy to have stability around her as she walks, to focus all her energy and weight-bearing forward onto that lectern, she would fall for sure.  It just seems wildly irresponsible, not to mention, out of character, for someone with CP like hers to choose to use an unsteady lectern for balance instead of remaining seated in a chair, where she could give her speech and also feel secure.

Amy talks, in her speech, about how "some people are more crippled than I am" and that "some people handicap themselves."  That "many people have disabilities they must make their peace with."  Outing someone's status as a disabled person, even peripherally, felt disingenuous to me.  For someone who knows what it's like to be discussed behind her back, I doubt very much that Amy would unwittingly out Matthew in this way.

ABLEISM:

Chapter 10:

In her speech, Amy talks about "making peace with her disabled body" and then goes onto say that she must not only "get from point A to point B" but also "wear a face that says "Don't worry!  I'm okay!"  That is not about her body, that's about other people's ableist reactions to her body.

Monday, March 7, 2016

Kathleen Says: Cerebral Palsy Awareness Month Interview #1

As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP.  (My own interview will be posted at the end of the month.)  I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP.  I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.  

First up, my friend, Kathleen:


--

What is the most important thing you have learned about yourself?

The most important thing I have learned about myself is that I am who I am today in spite of AND because of my disability. There were times in my life when it seemed like it would be easier if I wasn’t disabled, especially when I was struggling with the brutal environment that is junior high. I still have moments when it feels like being non-disabled would be so much easier. But then I think of all the people and experiences that have come into my life through my disability and I realize that I owe so much of my identity to them. My disability is not all of me, but it is part of me—a part that I value and celebrate. Learning to accept my disability as part of my identity in a peaceful and prideful way has helped me immensely. So has learning that being proud does not mean that I have to be smiley all the time about every aspect of CP. All of us need a day to whine about our spasms now and again.

What is your favorite thing about the month of March?

Feeling like spring is coming!

What is your favorite thing about yourself relating to your disability?

I like the perspective it gives me. Because of my disability, I learn from such a diverse group of people. It makes me think about life in a way I probably wouldn’t otherwise and allows me to have a broader view about what makes a valuable life. It makes me so sad to think of all the people I most likely wouldn’t know if not for my disability. I met some of my closest friends in physical therapy!

How do you deal with people's invasive questions, comments, or stares?

It very much depends on the context and how the person asks. Most of the time, I don’t mind answering questions if the person asks nicely and seems genuinely interested in learning. I’d also rather them get an answer from me than to make an assumption, go to “a specialist” that too often speaks for us, go on a crummy Google search. But I’m definitely not obligated to answer a question or educate at all times. I don’t exist to be a teaching tool and sometimes, I take a day “off” from educating if I’d rather just buy my groceries without dealing with random lady from the neighborhood’s questions. There are definitely times and places that are more appropriate than others… and certain questions that only belong in a certain setting. For example, I might be willing to answer a certain question in a formal educational setting (like a disability education panel) that I wouldn’t be willing to answer in the middle of the local movie theater.

It also makes a difference to me if it’s an adult or child. I feel more inclined to answer children because they are often genuinely curious and still learning. I still expect them to ask politely though and not to feel entitled to an answer if I’m not in the mood.

If someone dares to say, “What’s wrong with you?” I will say, “What do you mean by that?” and roll away.

What is your favorite song?

It’s so hard to pick just one song. I don’t think I can! But I most love songs that connect me to a happy memory. Some of my favorite artists include Taylor Swift, Five for Fighting, Kelly Clarkson, The Beatles, and James Taylor—a healthy mix of old and new!

What is one thing you want people to realize once they meet you?

I hate it when people say that “they don’t see my wheelchair” because it implies that seeing my wheelchair invalidates my personhood or something. Please see me AND my wheelchair—my chair is a part of my life and it doesn’t need to be erased to make my humanity visible.

Do you have a role model or a favorite celebrity in the disability community?  If so, who are they, and share a little about them.

This is tough because there are so many great ones. I think I have to go with the late Harriet McBryde Johnson, a disabled lawyer and author. Her work and ideas have very much shaped the way I view disability. Her books Too Late to Die Young and Accidents of Nature helped me articulate why many stereotypical narratives of disability make me uncomfortable—most specifically, the stereotype that we’re all hung up on “curing” our disabilities.

Have you ever watched TV, movies or a music video and thought, "That person's just like me!”  What was the show/movie/video?  Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

Sadly, there are not many media sources that portray disability in a very empowering way. But I’m a big fan of Zach Anner, a comedian with cerebral palsy who makes videos and had his own series about travel on the Oprah Network. It’s awesome to see a disabled person in the media talking about disability and other topics in a humorous, engaging way. I love his “Work Out Wednesday” videos in which he jokes about his lack of athleticism… especially the one about crawling on the treadmill.

What is your favorite piece of adaptive equipment and why is it your favorite?  (Wheelchair, walker, crutches, etc.)  (Can be yours or someone else's.)

My wheelchair. It has given me so much freedom to go places and do things without worrying about falling. It also allows me to save energy for other things… energy that would all be spent standing (on a walker) without it. My wheelchair has literally been with me everywhere through so many important moments… graduations, birthdays, good times, and bad times. I almost feel like it’s a friend rather than just an object. I love decorating it with buttons and trinkets that show my personality.

What is your favorite scent?

It’s tough to pick just one. I love the smell just before it rains… even though for me it’s a warning to get my power chair inside!

On a more sentimental note, I love the smell of the cologne my late grandfather wore. It connects me to so many memories and to his love for me. There are still traces of the smell in my grandparents’ house, and I always hope that my clothes will pick it up. I miss him and the scent helps me to feel that he is close by.


***

{Image is: Kathleen smiling in glasses
and a maroon dress.  Photo credit:
Kathleen Downes}
Kathleen Downes is a 23-year-old woman with Cerebral Palsy and a graduate of the University of Illinois at Urbana-Champaign, where she studied community health and disability studies. She hopes to pursue further education in social work. In her free time, she enjoys reading, writing, and participating in disability activism. She lives in New York with her family and her elaborately decorated power wheelchair. You can find more of her work at The Squeaky Wheelchair