Monday, June 30, 2014

Re: My Week in a Wheelchair #2: "Can I help?"

"I can understand how easy it would be to slip away and just give up, if this is what I had to look forward to, as in forever.” [x]

On the contrary, I think you’d find that you, like so many of us who are disabled, would adapt. I’d encourage you to continue educating yourself about people with disabilities. Read blogs and accounts by people with disabilities. If you find someone willing to answer questions, and dialogue with you, listen to them.

We are living our lives just as you are. We don’t need pity. And publishing insights that focus on how negative an experience you had temporarily being in a wheelchair is really harmful. Because while we all have down days, most people with disabilities are not constantly overwhelmed by the sadness and negativity of our circumstances.

Respectfully, I don’t need your insight, as an able-bodied person, on what it’s like to use a wheelchair temporarily. I need you to listen to people for whom using a wheelchair is an everyday reality and get an accurate representation of what living with disability actually is.

Friday, June 27, 2014

Advice: Upset About Lack of Independence

I'm just so upset [about my lack of independence.]

I’m sorry.  I know how frustrating it is when you obviously know yourself and people in your life (who probably care a lot about you and totally mean well) don’t listen.  Know that in all likelihood, they are doing what they’re doing because they care.  (I’m not saying it’s right.)
Is it possible for you to talk to them apart from these moments?  Emotions run higher when you’re right in the midst of a situation, but maybe in a quiet moment you may have more success just talking and explaining how important it is to you to continue making strides toward your independence?
Surround yourself with people who affirm you, and who recognize that you have your own voice, and respect it.  If you haven’t found these people yet, hang tight, because we’re out here.  I know you don’t know me well at all, but I completely get how frustrated you are and how important having power over your body and your life and your circumstances is.  
Think about areas you DO have control over.  Even if they are small.
Maybe try talking to your family ahead of time about certain things you want to try doing yourself.  You know yourself, but they aren’t in your head with you.  It may help to give them a head’s up about what you’re thinking.  It might help to have a conversation about it.  So they know not to interfere, or to only help if you ask them first.
You totally don’t have to take any advice if you don’t want it.  I hope you know you’re not alone.  Take care and message me anytime.

Advice: Looking For Shoes to Wear With AFOs

Hey guys I have a question what kind of shoes do you guys wear with your afos I have regular shoes that are big enough to fit the afos but Is there a shoe that would make it easier to put my shoes on with my afos by myself ?

When I wore AFOs, I wore a lot of hi-top sneakers (IDK if those are still in…) I also wore a lot of Velcro shoes. 

Would anything from here work for you?

Thursday, June 26, 2014

Advice: Adapting Buttons on Pants and Shorts

Life would be so much easier If buttons on pants/shorts didn’t exist because it’s hard for me to button pants and shorts so before I put them on I button them and then I have to get them over my big hips and butt haha. I can button my pants ect but I do struggle a bit especially because I basically use my right hand for everything. I can use my left hand a little but it’s difficult since my left hand is my affected hand. Anyway does anyone else struggle with this or have any tips to make it easier? :)

Until I could master buttons on pants and shorts, my grandma used to take them off and sew on Velcro in their place.

Tuesday, June 24, 2014

Soul Surfer

Soul Surfer is such a fantastic movie regarding disability representation. I love how whole-heartedly themes of adaptation are embraced. Bethany, and so many of the people in her life don’t hesitate to require her to do things, but they also are right there to help her think outside the box to find ways to accomplish things - whether tasks of daily living, surfing or something more. I like that the highs and lows were depicted, that she dealt with well-meaning offers of help and sympathy. So many things that people with disabilities live with every single day. Just fantastic.

Authentic Portrayal: No. Bethany is portrayed by able-bodied actress, Anna Sophia Robb.  However, Bethany did do her own surfing, for the scenes that required it.

Authentic Representation in the Writing:  Yes.  Based on Bethany's autobiography.  Bethany's family and Bethany, herself, worked very closely on the movie, ensuring as authentic a portrayal as possible.

Adapting:  Fantastic.  From the beginning, her doctor tells her the number of things she'll have to learn to do differently is "extensive" but the number of things she won't be able to do at all is "small."  Once she's home, the family makes sandwiches.  Bethany tries to cut a tomato, open a package (she does, with her teeth,) and at her mom's suggestion, gets the bread, but struggles with the twist-tie.  When the family prays, and her brother realizes he cannot take her hand, Bethany places his on her shoulder instead.  We see her struggle to get dressed, and put a ponytail in (her brother helps her.)  A month later, she's mastered slicing fruit, by moving the cutting board to the floor and stabilizing it with her feet, while using the knife to cut is a great moment and shows how she's figuring out new ways of doing things.  The whole family helps her train when she wants to compete again, and suggests new ways to counterbalance on the board.  And even later, her dad adapts the board for her even when she isn't competing.  And I love every single training montage because there's so much to them.  I love that they show creativity and growth and strength throughout.  

Helpless:  Not at all.  From the beginning, very early in her recovery and still in the hospital, she asks her dad, "When can I surf again?"  He doesn't tell her she won't be able to because of her injury.  He tells her she will "soon."

Portrayal:  Very positive.  She is shown to do her own grocery shopping, even though it's more difficult now.  She deals with children's stares and questions, and parents apologies (a very real part of having a disability.)  Later, we have the prosthesis, which is only for looks, and which Bethany doesn't like.  She goes to her room and snaps off her Barbie's arm.  Then, her mom finds a picture of Venus de Milo as a positive example of beauty without arms.  (I also thought it was interesting, since I ended up doing some quick research about the statue, that it was originally created with arms, but the arms were lost in the discovery.)

Perceptions:  When Bethany gets her bandages removed and sees her scar for the first time, she obviously looks to her mother to see her reaction - to see how she, herself, should react.  Wonderfully, Mom smiles and nods encouragement when Bethany looks in the mirror, and Mom waits until she is away from Bethany to cry (because any negative reaction could very much damage her.)

Faith and Disability:  Sarah should be an example to all people of faith as to how to react to a disabled person in their midst.  There is no talk of "fixing" or "healing" Bethany.  There is just support and empathy as Bethany figures out how to walk this new road.  She's not afraid to look at Bethany's scar, and she's not afraid to hug her.  She's not afraid, either, to admit that she doesn't have all the answers Bethany needs.  And in the mission field, she's just expected to participate.  No one asks whether she CAN help, and she doesn't receive any special treatment.

Special (Unwanted) Accommodations: Whether it's her mom being a bit over protective, or a competition judge offering a five minute head start, or Bethany's best friend encouraging a fellow competitor to "let Bethany have" the wave, these are all swiftly refuted.  Because like a lot of people with disabilities we don't want any kind of special treatment, we just want to do what everyone else is doing.  I love that that's shown over and over here.

Representation Matters:  This is my tag for all things disability related in the media, and I love that even within the movie, we are shown that seeing Bethany compete - even when she loses - it means so much to other children who are amputees.  It's not exactly what Bethany's mom tells her (though they may have been partially moved because she tried.)  I think it was that these kids saw someone like them on TV.  And that is so important, because there isn't a lot of disability representation in the media.  

Definitely recommend this one to anyone, especially kids 12 and up, disabled and able bodied (but with parental guidance, as it's got a few intense scenes.)

Sunday, June 22, 2014

How to Train Your Dragon

I got an adorable birthday card from one of my brothers today, with a sweet dragon on it. I commented on how cute it was and he said: “It’s How to Train Your Dragon. You’ve seen that, right? It’s really good.” Needless to say, we watched it just now and it’s AMAZING. I realize I’m about four years behind on this, but it’s incredible and has some fantastic disability representation, where no one is magically cured, but they learn to adapt and help each other.

Definitely recommended for all ages, especially kids 12 and under.

Wednesday, June 18, 2014

Advice: Adapting to Being In a Wheelchair

I have 2 herniated discs and have been in a wheelchair for 6 months. In this time I have seen first hand some of the struggles handicapped and disabled people face. I have gotten looks, people who don’t understand the handicapped stall is for handicapped only, and employees who get upset when I make them open the handicap register. I have seen people bump into me and not be sorry, literally jump over my legs instead of going around me, and people complain that I get to “cut” the line (when the aisles are so narrow I can’t even sit in line). I have been in places that claim to “gladly help” disabled, yet the employees do nothing to accommodate me to go into the store to look for items. I have rolled out of stores because they don’t want to let someone come into the dressing rooms to help me try things on. And this has only been 6 months, and it is temporary. I really feel for people who have been alienated their whole life because of something that they can’t control. This doesn’t make anyone less of a person if anything, it makes them more amazing because having to do what people do everyday they do in a wheelchair. There are laws to make sure that disabled people are not discriminated but these laws are definitely not implemented.

Adapting to being in a wheelchair when you’re older is more difficult, I think, than it is if you’ve lived with a disability all your life.

The truth is, things are hard. Learning to assert yourself is difficult. Know, though, that you are completely within your rights to stand up for yourself, if you feel comfortable doing so. 

There is nothing wrong with asking, “Excuse me? Could you reach this for me?” or “Do you have anyone available who could help me shop?” and “Where are the accessible fitting rooms?” Until you feel comfortable, perhaps, bring a friend or family member with you who will help you reach and carry things, who will be willing to help you try things on. “Accessible” is not always accessible, as you are no doubt learning.

If you need anyone to talk to or have questions about adapting, or anything, really, let me know. I’d love to help if I can.

Advice: Feeling Guilty About Disability

In a way I feel guilty about having the physical disability that I do, because there are people that have it much much worse than me. And in a way I feel like I should have it worse, or that I could trade it with someone that’s not able to walk. Because the extent of my CP is that I had and should still have to wear special leg braces to help me walk correctly but I no longer do because they hurt my legs and were too expensive. I can’t run more than 10 minutes without my legs hurting to the point where I have to sit. I can’t stand for more than 3 hours at a time without having to sit or my legs hurt for the next three days. My knees pop constantly and so do my hips. When I sleep my hip locks up to where I can’t move my leg at all until someone come to help me straighten my leg or I get out of bed and stand up to get it to go back to place. When I go up or down the stairs my knees hit together because they’re turned inward. And I can’t do stretches involving my legs or have my legs straight up in the air because my legs don’t bend that way. They just stop. I feel incredibly guilty because there are people that have CP and can’t walk and are in wheelchairs or have to use walkers. Some of them can’t talk or even see. And I feel like I should’ve had it a lot worse than what I do. It’s not fair to those that have it worse.

It’s natural to feel negative things from time to time. Know that you are not alone in your feelings. Surround yourself with people who love you, who will remind you of all the amazing things about you. Do something nice for yourself just because. Watch your favorite movie. Read your favorite book. Eat your favorite food. Life IS difficult. And it’s also awesome. It’s normal to experience both extremes and everything in between. I have CP as well, and I’m always here if you need to talk.

Hey, thank you for replying to that text post and being really nice about it, I don't know it just makes me feel awful that other people have it so much worse than I do

No problem!  
Everybody has rough days.  No matter who they are.  Able-bodied or not.  More involved CP or not.  Suffering and severity of disability are not mutually exclusive.  Honestly, we all have struggles.  Conversely, though, we all have awesome days, too!  Based on your post, I suppose you could say that I’m one of those people who is technically physically “worse off” than you.  That said, using crutches to walk short distances and a wheelchair the rest of the time is the only life I know, and I’m happy with it.  
I hope it’s okay to offer a different perspective.  
It’s totally okay to have down days.  Don’t make it worse for yourself by feeling guilty on top of it.  Especially when a lot of us who have it “worse” are used to our lives as they are.  We have grown up adapting.  We are really okay.
And it’s really okay for you to feel however you feel.

Tuesday, June 17, 2014

Advice: Dos and Don'ts for Interacting With Someone In a Wheelchair

Are there any misconceptions I should avoid?

Yes, and thank you for asking this. (And if I can kind of expand on this to include general do’s and dont’s I hope you don’t mind…)

1) Always presume competence. Whether our wheelchair-use coincides with an intellectual disability or not, no one likes to be spoken to in a condescending manner. When speaking to someone in a wheelchair (because you may not know if this person has CP or not) always talk to us as you would anyone else. It’s likely we can understand you perfectly.
2) Address us when speaking, by name if possible. People often assume those of us in chairs cannot communicate and ask the people we’re with what we’d like at a restaurant, for example. Remember that we are people with our own opinions, likes and dislikes. Look at us in the eyes when we speak. Listen to what we say.
3) Accept “no” as a full sentence and respect it. Sometimes, we don’t need help. Even if it looks like we do, keep in mind that we know ourselves and our limitations. If we say no to your offer of help, please respect it and move on.
4) Ask if we need help before doing for us. “Can I help you with that?” as opposed to “Let me get that for you,” because it gives us a choice to decline. Likewise, if we say we need help, please don’t feel uncomfortable helping us. We appreciate help when it’s needed, especially when it’s natural.
5) For children with CP: In situations where we are extra vulnerable/were extra vulnerable as children (the hospital, for example) take time to introduce yourself to us before anything scary happens. Find out something about us. Our name. Something we like to do. Then, always tell us what you’re going to do before you do it. Give us control in any way you can. A huge part of having CP for me meant not having control over the amount of pain I experienced as a child. Let us choose ANYTHING. (“Do you want me to start with your right leg or your left leg?”/”Do you want to watch this TV show or that TV show as a distraction?”) Any amount of personal power means the world to us.
1) Touch us without permission (including our wheelchair, crutches, etc). Never assume we want or need to be pushed unless we ask you first, or give you permission. You pushing us without permission is like someone picking you up and carrying you bodily from one place to another, without asking if it was okay to touch you in the first place. Completely invasive. Never take away our wheelchair, crutches, etc, even as a “joke.” Never joke about tipping us over. Don’t let us go suddenly without warning.
2) Assume we exist solely to educate and/or inspire you. We are human beings, living our own lives. We don’t exist to be ogled or pitied. Respect us enough to let us carry on with our lives. Acknowledge us in the same way you would anyone else. Hold us to the same standards you would anyone else. Be your own inspiration. Take initiative and educate yourself. (Even if this means asking questions and letting us come to you! :)
3) Assume we want/need to be fixed or healed. This is such a common theme, especially on TV shows. If there IS a character in a chair, they often lament the loss of a life where they could walk, run, etc. This reaffirms the notion that the only way we as people have value is if we are able bodied. Being able bodied is not the be all and end all. I would love to see a character on TV or in a movie who was disabled and carried on with his or her life as usual, with that as a part of their identity and story and history, but not as the reason they feel sad all the time. Wheelchairs don’t confine us, they liberate us. Wheelchairs are awesome. So are crutches and walkers and canes. See them as the help they are to us, and see us as human beings not as the objects that help us move around.
4) Assume we are all the same. I’ve heard the sentiment expressed not just to me but to others as well, “You’re too pretty to be in a wheelchair.” That just does not make any sense and is, honestly, offensive. Why? Because we are not all the same. We are black, white, Asian, Native American, Latin, Pacific Islander, fat, thin, average, tall, short, gay, straight, genderqueer, trans, lesbian, male female, sloppy, neat, fashionable, comfortable, etc. There are as many different kinds of people with CP as there are without. There is no one size fits all in symptomology, experience or appearance.
5) Stand for an entire (long) conversation. While not always possible, especially in the case of a quick meeting, or in a rush, know that we appreciate being on the same physical level as the person we are talking to. When you stand at full height, we are probably at eye-level with your waist. When you can, sit to talk to us. If there is no chair and you want to be on eye-level with us, squat in front of us. Don’t bend over us from your full height, and don’t brace yourself on our chair.
BONUS: If you see us being discriminated against, or mistreated, please help us. Make it known that you are a safe person to talk to. If you are a parent, watch for signs of depression or a change in behavior in your child. Be their advocate. Be sure your child knows they can absolutely always say no if they are not comfortable with what someone is doing or saying. Even if that person is someone in a position of authority. And if they can’t speak up, make sure they know you’ll always be there to stand up for them to make sure they are treated fairly.

Advice: What Help Have You Received?

What help have you received?

This question is a great because “help” has become a bit of a taboo word, I feel, particularly for people with Cerebral Palsy. (I’ve been in the Cerebral Palsy tag quite a bit and there’s a lot of the same sentiment. A lot of times we wish we didn’t need help.)
Relying on people can be difficult, but the truth is, there is no shame in asking for what you need. I’ve certainly had my share of help over the years.
I’ve had around eight major operations (it’s hard to keep track) between the ages of three days and eleven years old. I was given the option of having another around age twelve, but I said no to it, as it was the first time I was asked for my input about a surgery. The operations range from lifesaving to surgery that’s meant to improve quality of life. Lots of work on my legs.
Along those same lines, I grew up going to physical therapy (as a result of surgeries) and occupational therapy to work on coordination issues. (For example, the spasticity I talked about somewhat affects my right hand as well, and so it took me a long time and a lot of practice before I finally mastered tying my shoes at ten years old.)
In school, I had an IEP (Individualized Education Plan). While I could keep up with my classmates academically, I sometimes needed my assignments shortened or extended test taking time, because it took me a little longer to write. I also had to have adaptive physical education because that was an area where I couldn’t always do everything everyone else did, and adapting wasn’t something the mainstream gym teacher did naturally. Sometimes weird things came up that we had to deal with. For example in tenth grade geometry, I realized I physically could not use a protractor. Luckily my classroom teacher was willing to help with things that involved the protractor.
I currently live in accessible housing. That means the doors are automatic, the building has an elevator, and all the counter tops and surfaces are lower. There is space beneath all the counters for my chair to pull under to get close enough to cook, do dishes, etc.
My family has been amazing at helping me in everyday ways. When I was little my great grandpa and great grandma and my mom and dad used to adapt things for me. (My grandpa made wooden foot pedal attachments with straps so I could ride a Big Wheel. My grandma sewed these pockets with velcro that hung on the back of my walker, which I used before I used crutches, so that I could carry small things with me from place to place. My dad made an attachment on my chair so I could carry my crutches with me. My mom is great at thinking creatively whenever I need something adapted on the spot.) My sister does all the grocery shopping, the sweeping and the vaccuming, while I take care of wiping down surfaces, picking up clutter, doing dishes, putting away laundry, etc. All three of my younger brothers are more than willing to lift me down steep steps.
Probably the biggest help I’ve received is having been advocated for as a young child and being taught to advocate for myself by my mom. Though it was a difficult lesson, I’m grateful she took time to teach me how to say, “I can do it myself.” And in the same way, I’ve learned to ask, “Can you get this for me, please?” or something similar if I need to.

Advice: How Do You Manage With Your CP?

How do you manage with your cerebral palsy?

The thing about having Cerebral Palsy (at least, for me) is that it isn’t about “managing.” It’s about what’s normal. What I’m used to. Cerebral Palsy isn’t an injury I acquired later in life, I’ve had it since birth, and have grown up with it being the only life I know. So it’s kind of a strange question for me (inasmuch as being asked how you “manage” with your own life. Because you don’t manage. You just live.)
There are some things about my life that are likely different than your life.

For example, I use Canadian crutches to walk short distances, anywhere with stairs, and anywhere I can’t take my wheelchair:
I use my manual wheelchair (manual means I push it myself - it’s not electric) for longer distances and around home:

I also use a chair like this in the shower. I like it because it’s slip-resistant, because it has handles, and a back rest. My balance isn’t the best, even when sitting, so back rests are helpful.

Advice: How Do You Feel About People's Questions When Asked In Person?

How do you feel about people’s questions when asked in person (if you usually receive any questions at all)?

Another great question! And I’m going to say that honestly with questions, it depends who’s asking. To me, there’s a difference between a three-year-old asking me why HE doesn’t need crutches like me and a grown adult and complete stranger asking something out of the blue, because they feel entitled to the information.
If it’s a friend or family member, or anyone to whom I’ve already said, “If you have questions, let me know!” Like I did with you. If I offer, then I don’t mind answering questions. But if I don’t offer, then chances are, being put on the spot will make me really uncomfortable in person.

Advice: Good Sources to Learn About Cerebral Palsy

Are there any good sources (websites, books, etc.) to learn about cerebral palsy?

This is actually a tough one! You can Google anything. But as far as websites and books, I’m not sure, because most of those sites are by able bodied people (or I would assume, anyway.) Honestly, I think the best way to learn is to talk to us. Listen to us. 
If you want information on people in the public eye with CP, I know of a couple: Geri Jewell is an actress and comedian, who was on The Facts of Life, and more recently had a small guest starring role on Glee. RJ Mitte starred on Breaking Bad. And though she doesn’t have CP, Ali Stroker who is a wheelchair user and stars in this video with Dani Shay, is a fantastic resource for learning more about wheelchair users and disability in general. You’ll see her on my blog a lot.

Advice: Basics About CP

What are some things - I guess you can say ‘basics’ - that you think most people should know about cerebral palsy?

Cerebral Palsy is a result of brain damage (a lack of oxygen) that impacts the part of the brain responsible for certain movement. It isn’t progressive. It isn’t contagious. But it is permanent. It doesn’t always affect cognition but it can. As there are many different parts of the brain and many different degrees of oxygen deprivation, CP is as varied as the people who have it. This is a great, visual explanation of what Cerebral Palsy is.

Monday, June 16, 2014

Advice: Confronting Ableist Attitudes in a Medical Professional

Drinking Jager and Red Bull out of a hospital water jug.
I had to deal with a screaming child for 11 hours straight.
I deserve this shit. 
(Note, there was nothing wrong with him, he just has Cerebral Palsy, that’s how they “talk” if they are unable to vocalize into proper words. Don’t get me wrong I absolutely love my job but it can be really stressful at times.)

As an adult with Cerebral Palsy, I feel I have to point out that it’s a disability that affects people to varying degrees, and the way it presents is unique to each person. There is no singular representation (in terms of symptoms) or voice for CP. We all have our own experiences to convey. And frankly, the ableism in the above post is harmful.

You say there is nothing wrong with your charge and then point out all the ways he is stressing you out because he can’t communicate using traditional means. In particular your use of “talk” in quotes is really condescending.

This child is not a problem to simply be dealt with or that you were forced to endure for a shift. He is a human being telling you he’s scared or in pain or angry, in the only way he can. And that is completely valid and should be respected.

I apologize for how I worded my post, I realize it was insensitive. I mean no disrespect whatsoever, I am still new to this world and I know there are many varying degrees of Cerebral Palsy, and I am learning more and more every day and I will take your words to heart regarding my future experiences.

I really appreciate that.  Also, please know that if you have any questions about CP, I’m available.

I have Tourettes, and I'm not trying to compare the two by any means, but I know if someone had said something in a similar context I would have been pretty damn upset. I'll definitely be sure to ask you any questions I have in the future, you can be a very valuable reference to me.

It can be upsetting but I appreciate that you’re willing to listen and learn.  I know I don’t always say the right things either, (and again, I don’t claim to be the sole representative for people with CP as everyone is different) but I definitely have my own prejudices with regard to other aspects of life and I have been learning tons just from being willing to listen, as you are.  So thank you again for being willing and also apologetic.