Thursday, July 31, 2014

The Proof Is In The Picture

While hunting for a picture for Throwback Thursday, I found this.

Pretty cute, right?

Nice crown.  Nice Cookie Monster shirt.  Nice 5-year-old me.

You can't necessarily tell anything's amiss, except for the strange placement of my arms.  That's because I'm hanging onto the closest cabinet handles behind me for dear life.  So that my walker (which I used then to get around) would not be in this picture.

I was often photographed like this as a child.  In fact, I even remember asking the photographer who took my senior pictures if there was a way to take them so that my crutches and wheelchair were never shown.  And, as per my request, there is no evidence of either one.

Is there something inherently wrong with asking to be photographed without these things?

No, not necessarily.

Except that I remember feeling that I was "better" this way.  More acceptable.  People in my life were already telling me so.  And I, being so young, believed them.  It's shocking that at such a young age, I already had so much internalized ableism going on.

So, what can you do?  You, who, perhaps, have a 5-year-old in your own life, who you love and cherish more than words?

1) Take photographs with whole body focus, not just close up.

2) Look at them afterward, and compliment that 5-year-old's smile, but also use positive language about their walker/wheelchair/breathing tube/glasses.  ("Look at how nice you look!  And look at how great your walker looks!  See how shiny it is?  It does a great job helping you stand up, doesn't it?")

3)  Pay attention to the language you use when filming your child.  When going in for a close up, try not to say, "Look at that!  Just your face!  We can't see your wheelchair or anything.  It's better that way, isn't it?"  Instead, ask them to smile, or talk to them about something they like.

Re: Stop Telling Me I'm Pretty for a Girl in a Wheelchair

For me, Stop Telling Me I'm Pretty for a Girl in a Wheelchair was a revelation, because it made me realize I'm not the only one.

I'm not the only one who's received the comment (behind my back) "It's too bad she's in a wheelchair.  She's so pretty."  I'm not the only one who has been told "good job" for simply walking with my crutches from one place to another.  I'm not the only one who's been asked "What's wrong?", "What happened?" or "Can I pray for you?" more times than I can count.

Let me explain something.

A wheelchair is not a bad thing.  A wheelchair is an awesome thing.  A wheelchair gives me the ability to go places faster, to save my strength, to travel long distances...  It's not too bad.  But it's too bad so many people out there can't see that my wheelchair does not trap me, it liberates me.

It's not too bad.  Nothing is wrong with me.  Nothing happened.  So I don't need to be fixed.

I am not a burden.

I am a human being.

Re: Disability Is Not Just a Metaphor

I agree with Disability Is Not Just a Metaphor so much.  And everyone should absolutely check it out.  Because the names of disabled characters are several, but those who are actually portrayed by disabled actors are few, and it does, absolutely impact the authenticity of the story they are telling.

Tuesday, July 29, 2014

Advice: Encouragement Toward Disability-Related Goals

Did it feel okay for people to pray for (or encourage you toward) reaching goals that were specific to your disability? Like for [my nephew] being able to walk or communicate?

Depends on the way it's done, honestly. If the goals are realistic, then yes, I'd say so...but don't make them the be all and end all, you know? Celebrate the small victories, just as much as the big ones. Accept the communication he IS using as well as teaching him more. And if you (your family) can give him lots of control, that's awesome. Kids with disabilities often feel a lack of control over their bodies and the amount of pain they experience (due to surgeries or therapy.) So let him choose between 2 things whenever possible.

While I get that goal-setting is totally important, and meaningful, and will help in the long run, be sure he is loved and affirmed for who he is. Because he's [your nephew]. Not because he can walk. Or communicate in a traditional way.

Monday, July 28, 2014

Re: Teaching Your Child to Show Love and Respect to Individuals with Special Needs

Overall, I think, Teaching Your Child to Show Love and Respect to Individuals with Special Needs was great. I love the encouragement to have a conversation with kids about how everyone is different. Has different talents, different ways of doing things, etc. I loved the emphasis on teaching acceptance of people with disabilities just the way we are. (There is nothing wrong with saying "disabilities." "Special needs" can come off a bit patronizing, though.)

Along those lines, always ask the person with the disability what terminology they are comfortable with. Some of us may say "people with disabilities" others may say "disabled" others are comfortable using the word "handicapped" or "crippled." It varies from person to person. No two of us are alike.

I'd say, keep the explanation simple. If you want to bring God into it and say "God makes everyone," "God loves everyone." "God makes everyone different." I'd leave it at that. A lot of the subsequent commentary is really patronizing.

Also, while the mother might be comfortable answering questions about her child, the child themselves might not be. Always, always presume competence. Don't approach a child unfamiliar to you with an ulterior motive to have someone else's child educate yours. Educate yourself. Have your kids educate themselves. If you want to ask a question about the child's disability? Don't. (Ask if you are familiar with them AND if they have told you they're comfortable answering questions about their disability.)

Other Tips for Kids:

1) Teach them to talk directly to the other child, not the parent or caregiver. If they cannot think of what to say, just encourage them to introduce themselves, and ask the other child their name.

2) Teach them to never touch the other child without permission from that child. (This includes their glasses, wheelchair, breathing tube, etc.)

3) Teach them to respect if and when the other child says no (whether that's to a hug or to having their chair pushed.) Saying no is the other child's right, and it's so important for them to be heard and respected.

4) Teach them to get an adult (or better, the other child's parent or caregiver) if your child sees the other child being mistreated or discriminated against.

5) Regarding the remarks that "that person is in a wheelchair because their legs don't work" and I really want to offer you that a wheelchair or glasses or breathing tube or ANYTHING like that? It's not a hindrance to us. Those thing actually liberate us and help us live the lives we want to live. Frame them as such for your kids.

Friday, July 18, 2014

Startle Reflex in CP: Please Don’t Scare Us On Purpose

Startle reflex (also known as startle response) is very similar to Moro reflex which is the reflex that newborns and infants show when they feel like they are falling. It typically goes away by six months old. If the Moro reflex continues for longer than that, it can be a symptom of Cerebral Palsy.
While it may look funny to see us jump response to certain noise (thunder, fireworks, someone jumping out and saying boo, clapping or laughing) what we are actually feeling is intense and unpleasant.

[Image is: Fireworks]

The closest description I could find was of the fight-or-flight response. (It’s what most people might experience during an actual threat to their safety and well-being. Being immediately threatened with physical violence, for example.) This is a response people have no control over. It a physiological response to a perceived harmful event, attack or threat to our survival. It starts in our brain, and causes automatic reactions that come with the startle reflex you can see.
What you can’t see?
- The surge of adrenaline causing our heart to suddenly race.
- Our shortness of breath.
- How “on-alert” we continue to feel after you scare us.
- How long it takes us to regulate ourselves. (Hint: It’s likely long after you’ve had your laughs and moved on.)
Just like you would never threaten someone’s physical safety and laugh it off as a joke, please don’t scare us on purpose. It doesn’t feel to us like regular surprise. It’s our response to a perceived threat. Our startle reflex is hard enough to deal with during fireworks or thunderstorms. The last thing we need is people who trigger it on purpose because it looks funny. When you do, you’re intentionally triggering a fear response.
It’s complicated by the fact that a lot of people with CP already feel vulnerable We don’t need extra reasons to feel on-edge or afraid.

Thursday, July 17, 2014

Not All Disabilities are Immediately Visible

I’ll never forget the night my family went out to eat at a local restaurant that we’d frequented previously. There was a line and a bit of a wait for a table, so my parents chose to wait with me, my sister and my brothers in the vehicle, knowing that with my crutches, it was hard for me to stand in line. We’d been waiting for a few minutes, the sticker clearly visible, when a woman came up and started screaming at my parents. How dare they take up a spot when they didn’t need it? It went on and on. My parents yelled back, asking the woman, “Do you want to see my daughter’s crutches?” I was fourteen, and so embarrassed. I’ve never forgotten that.

Tuesday, July 15, 2014

Ableist Commercial

I saw a commercial for a service that matches disabled kids with non-disables kids so they can be friends. The whole commercial was the Mom of the disabled kid going on about how amazing it is to have '"normal" friends. It's because of you that I even realize how ableist it is. That commercial made me so angry.

Seriously?  Oh GOD.  That sounds terrible.  

Advice: Bothered by Over-Protective Family

My disability usually doesn’t bother me much, but lately it has. I’m 25 & my family treats me like I’m fragile doll. I hate that just because I’m disabled, I can’t be treated like a normal 25 year old women? There’s some days where I wasn’t disabled & was a abled bodied person, especially lately more than ever. I feel like my family puts me in this bubble & all I wanna is to bust out.

That’s so frustrating. My parents always were pushing me to BE independent and do things (even if I wasn’t able to physically do them in some cases.) But some of my extended family behaved toward me like your family is treating you. I’m sorry about that, first of all. You deserve to have as much independence as possible.
I’d say, focus on what you can control, first of all. Having control over your own life is important, and so difficult if you feel like you are constantly being hovered over or stifled. You may have to start with small things. Then once you start, try adding something to your list every day. Even if it seems small. (For example: Did you pick out what you wore today? Do you decide where you go around the house? Do you have time to yourself to do things you enjoy?)
Also, is there anyone in your family who you can talk to about your desire for independence? Accessible housing exists, and I’d suggest searching for it in your area, if it’s something you want.
If it’s possible you can also try talking to your family about certain things you want to try doing yourself away from the moment they’re happening. (Want to help around the house? Bring it up before cleaning happens. Suggest things you CAN do. Wiping a surface, setting out silverware, folding laundry, for example.)
Remember that there is nothing wrong with you. Being disabled is not a bad thing. Your desire for independence is natural. You should be treated like an adult because you ARE an adult. I hope this helps!

Advice: How To Deal with Family Member's Misplaced Blame

Fucking horrible day. The last two days seemed unimportant, so I skipped them, but today. Jesus. It started with a full hour and a half of intense physical therapy with Mr. “I want it to hurt!!” Mom drove me to work afterwards despite my exhaustion. On the way there, she went further than she’s gone before by flat-out saying that I could’ve prevented my surgery if I had just worked harder and done more (completely untrue, as my calf muscles were physically too short, hence the gastroc LENGTHENING) and why does she have to pay for my laziness? Apparently I took the easy way out?? Even though multiple doctors have suggested this procedure starting as early as when I was 8 years old, and she flat out refused to acknowledge it as a viable option. Subjected me to 12 years of fruitless therapy. So when I turned 18 and got medical consent, after suffering from compressed discs, constant pain, weak ankles that constantly caused me to trip, bad knees, etc, and when ONE OF THE BEST CP DOCTORS IN THE COUNTRY told me it was only going to get worse, you fucking BET I went for the only foreseeable solution. If my own mother blames me for my disability, what am I supposed to do? That’s not a rhetorical, I really need help here.

That sounds awful. I’m sorry.
What are you supposed to do? Don’t disregard your own feelings. Find some way to safely express yourself. Surround yourself with people who affirm you and love you for who you are. Also, recognize that your mom’s reaction is about her, not about you. You were doing what was best for you, when your mom for whatever reason, wouldn’t or couldn’t. You did what was right for you, and that’s the thing to remember.

Monday, July 14, 2014

Advice: How Do I Accept Something So Shameful

google: “how to be confident about your disability”
my results came up saying “accept your disability!”
how can i honestly accept something so shameful, the fact that i can’t use the stairs or that i need a cane sometimes to walk. i never thought this would happen to me. what i really need is a method to ignore the stares i get in wal-mart or at my school

There is nothing shameful about having a disability. There is nothing wrong with you. What’s wrong is the people in your world who don’t let you go about your day as you usually would. Know that there are people in the world who also have disabilities. Know that we lead full lives. Know that we know how you feel and that you’re not alone.

Friday, July 11, 2014

Advice: How Can I Help My Friend Best Friend With CP Work Out

My best friend, who has cerebal palsy, wants to start working out.
Could anyone with the condition, or knowledge of the needs of people with this condition advise my friends and I on how to train him? Are there things I should know about cerebal palsy?  How could someone with the condition make good gains?

First and foremost, be aware of the language you’re using. You’re best friend isn’t a pet. He’s a human being. Having said that, as this is something he has expressed interest in, I’d first tell you there is more than one type of Cerebral Palsy. The type I have, for example, affects only my legs. It makes the muscles in them tight. It also affects my balance. There’s also a type that means the muscles are overly loose and floppy. It can affect any of the limbs or all of them.
For CP that makes the muscles tighter like I have, stretching is a great exercise and can help with mobility and range of motion. I would suggest starting slowly and with less reps. Make any increases only according to what your friend is comfortable with. If you are helping him with this, it’s really important that he can trust you with his body. Listen to him. If he says something hurts, believe him. When stretching, always bring his leg (for example) down gradually. Never drop it. Let him be in control of how many reps he wants to do and how long he goes for.
Swimming is great as far as a low impact exercise that your friend might enjoy. HOWEVER, (and this is a big however) if you or friends help him with this, be absolutely positive that you can safely help him in and out of the pool. If you can’t, bring someone with you, who can. Remember, even if you can easily help him in the pool, when helping him out, he’ll be wet and slippery. Also, he’ll likely wear a life-jacket (don’t hassle him about it, even if you think he’s fine and knows you’re joking.) If you cannot safely do this with him, don’t.
If he’s able, go on short walks with him with his walker, crutches, cane, or manual wheelchair (pushing himself if he’s able.) Walk beside him at whatever pace he sets.
The most important thing is to listen to him. Ask HIM what he wants to do to get in shape. Then ask if it’s something he’d like your help with and how exactly he needs you to help.
Hope this helps!

Thursday, July 10, 2014

Advice: Mom of Child With CP Feeling Unsupported

I'm really not trying to be rude but have you ever noticed that a child that was born healthy but suffers some illness or injury later on in life, they are supported by large numbers of people who support the child and follow their “triumphs”. BUT a child born with a disability that they will never outgrow are brushed off. Is it because the others are born and show some amazing potential in those first formative years and then lose it? Or is it because the child born with the disability is never seen as a whole human being?

Don’t get me wrong. All children need support, but from the perspective of a mom with a child born with severe difficulties they will never outgrow or improve upon society just seem this way.

You may have to network a bit to find the support you’re searching for. But I can tell you that, as an adult with CP, my parents were my biggest advocates. 

You are your child’s biggest cheerleader. You can totally celebrate those triumphs, and encourage your child each day - trust me - that will mean the world to them. We don’t need huge amounts of people pulling for us, but we do need our families.

Focus on what you can control. Lean on your family and/or friends. I’m sure there are other parents in your shoes.

Wednesday, July 9, 2014

CP Tag

1) What kind of CP do you have?

Spastic diplegia.

2) How did you get CP?

I was born prematurely.

3) How did you feel about it growing up?

When I was very young, I didn’t think about it much, because it was what I was used to. But once I started school I did notice differences and often wished I could do as much as “everybody else,” and be treated “the same.”

4) How has CP impacted your life (Good & bad)?

Good: The community of people I’ve been able to meet and talk to has been great. And I really like talking to people and challenging their perspectives and stereotypes about people with CP and other physical disabilities
Bad: A lot of physical pain from surgeries and recoveries and rehabilitation after surgeries. The sheer number and intensity of surgeries, which led me to crave control in my life and led to later issues. Feeling ostracized from my peers because of my CP. Being raised by parents who, though they love me very much, have ableist attitudes that still impact me.

5) Do you ever think about your life without Cerebral Palsy?
There were certain ages when I did. Around age 12, I was convinced that if I worked hard enough with my stretching and other physical exercises, I’d be able to walk without assistance. Around 18, when I started attending church, I really found myself longing to not have CP.

6) How was schooling with Cerebral Palsy

Schooling was both positive and negative. I had great teachers and I had not so great ones. I had adaptive physical education all through school, and an IEP which I really disliked, because though it took me a while longer to write, I was able to keep up academically. I hated being set apart, but dealt with a child in second grade telling me I was “cute” every day. (Cute in a patronizing, dehumanizing sense, not in an “I have a crush on you” sense.) Fourth grade was not great either, because my teacher absolutely did not know how to cope with a student who was disabled. Fifth grade, I had major surgery, but had a fabulous teacher who came to my house to teach me during the two months I was home recovering. I used a walker in elementary school, crutches all through middle school, and because I moved onto a really big high school, I used a wheelchair there.

7) How has your disability changed throughout your life?

 I have noticed more physical pain and that I get tired easier than I did when I was younger.

8) How will things change for people with disabilities?

In my lifetime, things have already changed tremendously. My sister and I were the first kids with disabilities to be integrated into our nursery school teacher’s class. I was nine years old when the ADA was signed into law. So I can only hope that things continue to improve.

9) Do you believe in God? Does that help you deal with having CP?

Believing in God has actually been more harmful than helpful for me. For about ten years (18-27) I attended a church where most of the congregation told me God would heal me, asked if they could pray for my legs, and told me how inspirational I was after a church service (just to name a few instances.) I can’t tell you how damaging it was for me. I eventually stopped going, believing I was a distraction to them. (My biggest mistake was in not realizing that they were in the wrong, and not deciding to leave sooner.)

10) If there was a pill or cure for CP, would you take it?

Honestly? It depends. I’d love to experience daily life the way most people do - able to go about their business without being stared at or asked rude questions. But I also feel like CP is a big part of my identity and that trading it would mean losing an important part of what makes me who I am.

Sunday, July 6, 2014

Notting Hill

You guys. My sis just told me she recorded the end of Notting Hill, because I had to see it. It made her think of Artie in that Season 5 episode of Glee where he got left behind because there wasn’t room in the car for his chair.
Except this made her happy.
So, we watched the end of Notting Hill, where Hugh Grant’s family and friends get in the car together, to find Julia Roberts. One of them asks, “Where’s Bella?” (who’s a lawyer and a paraplegic.)
"She’s not coming."
We see her on the sidewalk, beside the car, full of all the people she loves. Her husband doesn’t think twice. He tells everybody in the car to move back, and free up the front seat, and without a word, everyone does.
He gets out and comes over to Bella, who claims she is fine staying behind, and kisses her, helping her into the car. The chair is also stowed quickly, with the help of everyone.
Hooray, Notting Hill!

Saturday, July 5, 2014

Advice: There Is No Nice Way to Ask Invasive Questions

It is odd [to be asked about your body and personal life] but also why should you be ashamed to explain if it’s asked in a nice way?

It’s not about shame. It’s about able-bodied people feeling entitled to ask invasive questions of disabled people AND expecting your questions to be answered. If we are open to answering questions, and we make that known, then you are more than welcome to ask. But just because I use a wheelchair does not entitle anyone to ask invasive personal questions of me, or give them the right to touch me without my permission.

Fully agreed. Nobody should be touched in a way they’re uncomfortable. However, as the disabled person, you have the ability and decision to decide how to approach situations. Angry or able to put things into perspective. Able to decide when someone is being invasive as opposed to curious. Approach this type of recurring situation with some intelligence and dignity rather than coming across like some sort of angry disabled person. I’m done with this topic.

Absolutely. It’s absolutely my choice. It directly concerns me. And I’ve been dealing with “well-meaning,” “polite” questions my entire life. So, when you want to approach someone, asking them a question in a nice way, keep in mind that you are not the first person. That we have had numerous people asking us, from the time we’re small, “What happened?” “Why are you in a wheelchair?” “Can you walk at all?” Some people are not polite, at all. Some people have hurt us physically, thinking we just aren’t trying hard enough. Some have taken away our mobility aids, held our hands and then tried to let us go, in an effort to get us to walk unassisted, when it is not physically possible for us
When able-bodied people sustain a temporary injury, it’s common to ask what happened. It’s an act of concern. And if you’re friends with a person, and you know they got hurt and will need to use crutches temporarily, for example, I’d say it’s perfectly acceptable to ask after them.
The issue comes when you are approaching people you are not familiar with, number one. You are strangers to us. We don’t know you from the next random person, and explaining our personal history IS invasive. The second thing to keep in mind is that you asking a disabled person “What happened? Why are you in a wheelchair?” for example, feels to US, the same way it would feel to you if a complete stranger approached you on the street, with concern and pity on their faces and asked you, “What happened? Why are you walking?” Wouldn’t that be off-putting? It is to us, too. Because for a lot of us, nothing happened, it’s the way we were born. It’s normal to us. (And if something DID happen later in life, it’s completely our business when or if to disclose or discuss that.) Now imagine that too many strangers to count have approached you with similar sentiments over the years. Imagine that you were asked these kinds of things as a child, by adults.
Does it feel a little violating? Do you think you might have a reason to feel angry, especially if it didn’t just happen once, but over and over?We are people. Human beings. We want to be able to go out in public and not have this happen to us either. We have lives to lead and things to do just like you do. And we want to do the things we have to do without feeling self-conscious or fearful of strangers asking personal questions - even well-meaning questions.
I don’t take issue with you personally, but would really encourage you to educate yourself. Listen to what people with disabilities are saying. We’re not all the same, but I’d bet there are common threads in a lot of our responses to your questions.

Challenging Ableist Attitudes for 20 Years

I always think that challenging harmful stereotypes and attitudes toward the disabled is a more recent passion, but then I found this.  A children’s book I wrote when I was twelve, about a kindergarten student named Abbie, who uses a wheelchair and deals with discrimination.
I always think that challenging harmful stereotypes and attitudes toward the disabled is a more recent passion, but then I found this. A children’s book I wrote when I was twelve, about a kindergarten student named Abbie, who uses a wheelchair and deals with discrimination.

Advice: Finding a Balance When Exercising Causes Pain

I’m in so much pain right now from trying to do the right thing and exercising, I’m literally in tears. It’s like an never ending cycle I have to lose the weight to help improve my condition and go through less pain, but in trying to do so I’m in so much more then “normal”. I don’t know what to do anymore it seem so easy just to give up, but I can’t do that anymore 😭😩 feeling really alone right now.

I don’t know if I have any advice that will help but know that you are not alone. I experience this, too. I hadn’t done stretching in a long time, and earlier this year, I started again, and did it for a while until I started to feel intense pain and had to stop.

It occurs from time to time, and what’s helped me is to listen to my body. If you’re in lots of pain, first of all, manage that first. Ice, heat, Tylenol, meditation, whatever is soothing to you. Rest for at least 24 hours before trying anything else exercise related, When you feel ready, slowly start reintroducing exercise into your daily routine.

I walk laps as exercise, and this is a great example. Because to start out, I did 16 over the course of a single day. I kept that up every day for the longest time, until I started to have pain. It was pretty intense.

I cut back to 2 laps a day. And stayed at that level for a long time. Just recently, I noticed I was feeling weaker, and upped it to 4 laps daily. That’s what’s working for me now.

The key is to stay active. Doing a little exercise every day is definitely better than doing none at all. Do seated, low impact exercises while watching TV, for example. Try to consciously engage your core, when sitting, standing, etc. Pay attention to your body as you’re exercising. Slow down if you feel winded. Take it easy when you feel pain. 

You can also try substituting water for another beverage (say, pop or juice.) Try to drink 6 to 8 glasses of water a day. That will help cut calories and will probably help you feel better, as well.

It’s really about finding a balance that works for you. Sending healing thoughts your way! Hope this helps!

Thursday, July 3, 2014

Advice: Perhaps Your Attitude Has Not Changed As Much As You Think

I’m not going to add any images to this post. I just want you to ask yourself some questions. When you encounter a person with disabilities, what is your reaction? Are you scared or nervous? Annoyed or irritated? Perhaps you brush them off like so much dust on your shoes? Could it be that you feel sorry for them and hope their life is short because it must be miserable? I know someone with a disability who endures all of these attitudes. What he would really like is for people to be patient with him, listen to what his interests are, and find a place in this world where he can be useful and provide something of value for others. He’s really very sweet and sensitive, although admittedly it takes extra time and effort to work with him. My attitude has changed since I’ve known him and I’m grateful for our experience together.

Keep listening. Keep learning. Try not to speak for us. Let us speak for ourselves. 

I am disabled. So how do I feel about people with disabilities? I feel that we are human beings. And I feel tired of the feeling I need to do something specific to justify my own existence and conversely being on the receiving end of undue praise that sets the bar so extremely low for me and those like me. I do not exist to be your inspiration or your way by which to measure how much better or worse you believe you have it.

I am enough just as I am. I don’t need to be TOLD I have value by an able-bodied person to know that I HAVE value. I don’t have to do something useful to justify my being here.

I AM here. 

I am disabled.

I am human.

Advice: The Harm In Inspiration Porn

// this is a weeper! here is what true parenting and love is.

These types of videos are difficult for me to watch because of the utter lack of regard and respect for a human being. Having CP myself, it's really hard to hear about the way Rick was treated and how no one believed he was smart. It's hard to see videos like this, of accomplished people like Rick and yet in the voiceover, he's "Ricky" and whoever's narrating is speaking for him - about how he'd want us to tell you such and such. Why wouldn't they end with something else he, himself said? I just feel like this is another way to hold us as people with disabilities, back. Rick's a human being, who likes to run races with his dad. I just...don't know. He's seen as an inspiration BECAUSE he's in a wheelchair. That's not a reason to be seen as an inspiration. Sorry. This is just a raw nerve for me.

I respect your feelings! thanks for being honest! the reason I do find this to be inspirational is that there are stupid people who really do look at those with disabilities as less than human. rick's dad was advised to put his own son away in an institution. the horrid thing is that people still think like this! when I went in for my first prenatal appointment I was told that I could have some tests done to determine whether the baby had any deformities or disabilities and that then I could "make an educated choice on whether I wanted to keep the pregnancy." I nearly barfed in my mouth. it would not matter to me what the results of those tests were. it is still a child who deserves life. (I never went back to that clinic again) anyway, I feel there may be two sides to this coin. I see that, 1) those with disabilities (say, those who have cp, for example) just want to be treated as normal and not given any time in the spotlight for their differences, and yet, 2) it is something to celebrate overcoming a disability and sticking it to those who look down upon those with disabilities. I so see what you are saying, but yet I want to be able to celebrate life and those who accomplish immensely great things! sorry if anything I said was insensitive. I tried to be very sensitive! love you bunches!

I'm so glad we're able to talk about this because it's so important to me. It's absolutely atrocious that people are advised in that way regarding pregnancy (specifically that way, because it is so discriminatory toward those with disabilities.) To address your points 1) YES, ABSOLUTELY. People with disabilities want to be treated like people because we ARE people. We are living our lives in the same way you are living yours. We don't want you to applaud us for running a race (at least any more than you would root for any other runner) or opening a door, or having intelligence, or simply existing around you. (I'm saying "you" in the collective sense, btw, not only directed at you.) 2) Disability is not something to "overcome." It's a part of my identity as a human being, and it's not negative. To say you want to celebrate overcoming disability is like saying I want to celebrate NOT being everything I am. Having CP is not everything I am, but it's an integral part of my identity and how I experience the world. The notion of "overcoming disability" feeds this perspective that people have to be able-bodied to have value. I don't want my everyday tasks celebrated like they are miracles, but neither do I want to feel shame in what makes me who I am. Disability is not something to overcome. It is not inherently bad or wrong. And it's not something to be healed of. I am enough. Rick is enough. Every person I know with a disability IS enough. Celebrate us when it's our birthday. When we experience something fantastic. When we graduate, get promoted, have families, get a new home. But don't celebrate us for existing. For getting up in the morning. For being seen. Because that sets the bar so low. It's so damaging, because it means you see us as so much less. We don't need your pity. And overcoming harmful attitudes ABOUT us is much more important, frankly than overcoming our own disability.

Tuesday, July 1, 2014

PTSD Recovery Resource: Trauma Box

While not for everyone, as every trauma and recovery is different, I thought I’d share something that has really helped me in my own recovery from PTSD. I went 8 years after a major trauma functioning in two ways: dreading an anniversary reaction and having an anniversary reaction.
I’d begun watching a television show where a woman who had gone through trauma and grief was encouraged to make a box, and put memories of her loved one in it. Her box was small, and wooden, almost like a jewelry box, and contained smaller mementos of her loved one.
I couldn’t get the thought of that box out of my head, so on a hunch maybe a year after I’d seen the episode, I went to the store. I found a plain, white photo box, about the size of a shoe box. I also found finger paints. Though I’m sure I finger painted in nursery school, it’s difficult to conjure any conscious memory of it, and on the same television show, I remembered a different woman being given free reign with a block of clay after talking about a trauma she experienced. I remember how she went to town destroying it. (Another threw paint.) And I got to thinking that maybe something tactile would help me process my trauma, too.
So, I painted my box.
When it dried, I filled it up. I found I liked painting so much that I did 5 more. This is one I feel safe sharing:
I also put anything related to that time that I wanted to keep and look back on in the box. Accounts of what happened. Journals. Memories from prior to it.
Because I was never formally diagnosed and wasn’t insured at the time, I did some looking, and found a PTSD workbook that I could safely go through, at my pace, addressing only the things I felt safe to. Whenever I did things from the workbook, I made sure I was in a safe mentally and physically. I had calming music, a blanket, a comfort object and a list of people to reach out to if I needed to. I also quickly found I needed to limit the amount of time I let myself spend thinking about my trauma. I also was extremely intentional about when I worked through it. As I become more symptomatic in fall and winter, I made my box and did a lot of personal work in early June when I was the least symptomatic.
It was super cathartic for me to be able to express my feelings in a way I hadn’t done before. (I write, but had never painted.) The box itself is also wonderful because of the limits of it. I love being in control of when I open it, and how long it stays open. If things get overwhelming, I can always close it and put it away.
I still struggle from time to time. The box (as anything) is not a cure-all, but it’s definitely been helpful. I’m not a professional of any sort. I just thought making this post and putting it out there might help someone else. Remember that your number one priority should be your own health and safety. It’s okay if you’re not ready to deal with your trauma. It took me years to face mine.
But don’t lose hope…and if you’re ready…try making a box, and put inside whatever YOU need, while surrounding yourself with plenty of comfort, safety and love. It’s not about triggering yourself on purpose. It’s about giving yourself control over when, where and for how long you look back, so you’re more ready to look forward, whenever the time is right for you.

Advice: Worried About Leaving Sister With CP

There is 31 days until My sister and I move. And I am getting worried about leaving behind my [other] sister. She has cerebral palsy and the mental ability of a 3 year old.
I am so scared she will hate me. I am so scared she won’t get as much attention as [we] give her. I’m scared she’ll hit and scream at ppl when they try to care for her when we rnt there. I am scared that she will begin to not care that I’m gone the way she stopped asking for my stepdad when he moved out and now she barely acknowledges him when he’s here.
I know that I cannot hold back my life to be near her. I know I need to go to college and enjoy my life. I’m also afraid I will be ok without her. And will fail to think or worry about her.

My biggest advice to you is, focus on what you CAN control.

Have you talked to your sister about the fact that you’re moving? Having CP doesn’t negate the fact that she will likely handle the separation better if she is prepared.

Talk to her about moving. Share about where you’re going. Show her pictures.

Talk to her about all the ways you can keep in touch.

Take pictures of yourself and your sister who are moving for your sister who is staying home to keep in her room. Maybe frame them, and let her keep them somewhere she has access to them.

If you don’t have something like Skype, maybe make a point to get something like it, so that she can have the chance to see both of you and still feel connected.

Send her things in the mail. Everyone loves getting packages. So, draw her pictures, or take pictures of yourselves. You can include addressed and stamped envelopes back to you. Encourage her to send you something back.

Read books about moving, and emphasize that you will be back. Maybe find a calender that she can tear off a piece of paper every day, so she has a representation of when you’ll be back.

Keep track of any special days, and be sure to get in touch on those days, especially if you can’t get home to see her. (Birthday, any other significant event.)

The most important thing is to talk to her about your move. Don’t just leave. Despite her ability or what she appears to understand, you are very important in her life. She deserves to know what’s going on.