Parenting Kids with Disabilities: This was my summer blog series for June - September, 2017. It addresses various aspects of parenting kids with disabilities that may not be addressed elsewhere. You will find all the posts linked at the top.
Let's Talk About Faith: Talking about faith is always tricky. The risk of offending believers is high, even if we, ourselves have once been on the inside. Inside the church walls. Close to the priests and pastors. To God’s people. I think, though, it’s important to take the risk. To talk about the way faith shaped me as a woman with CP. Ways it helped, and ways it hurt.
Let's Talk About In The Land of Canaan: ...There is danger in doing a project like this when your feelings and attitudes for our community have yet to evolve. While done with the best of intentions, I have found this documentary to be objectifying, exploitative and ableist, and I cannot in good conscience, have watched something like this, that so harms my community, and not speak up about it.
Let's Talk About The Time I Dropped My Mom's Mother's Day Flowers on The Ground: "Yeah, I offered to carry them for her, but she said no. I KNEW she would drop them!"
Let's Talk About The Gap Between Disabled Adults and Parents of Kids with Disabilities: "You guys are the first generation raised out of institutions. Before that, parents always spoke for you. We had to. There was no other choice. Now, though, you've grown up, and you speak for yourselves. You're the first to ever do that. I don't think we, as parents, are used to it yet."
Let's Talk About The Effects of Consistent Patronization: We are often told in society that we must not overindulge disabled children, lest they grow up feeling entitled to everything, making them spoiled brats. Little is said, though, about the other end of that spectrum.
How My Great Grandpa's Innovation Made It Possible for Me to Ride a Bike: Grandma and Grandpa brought the new Big Wheel home, and Grandpa went down to his shop...
How a Parent's Response to Ableism Can Impact Their Child: Mom continued recounting the moment: "I wanted to take him by the collar and shake him. I wanted to tell him, 'Of course she can talk!'"
Cerebral Palsy Awareness Month Interview #7: 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.
Let's Talk About Typical Siblings: As a kid, my thought about my sisters were that they are just as strong as everyone else, and they are a lot smarter than anyone else - they just have some trouble walking. That's how I would explain it to people when I was younger.
Let's Talk About Place Blindness and CP: In layman's terms, place blindness means that I can navigate place to place only if there are significant landmarks guiding me.
Let's Talk About Falling: Though I can't remember it, I'm positive I had to be taught how to fall correctly. I know it didn't come naturally to me. Spasticity means that I tend to go down hard and fast, and it never felt possible to go against my body's natural momentum and attempt to fall forward. Usually, instinct is to break your fall by putting your hands out, but mine were usually full - Canadian crutches meant I couldn't often break my own falls.
Let's Talk About Safety Issues and Disability: It was December, 2009 when the fire alarm went off in our building in the middle of the night. Ripped from sleep, we got up and made our way to the apartment door which we felt to be sure it wasn't hot. We didn't smell smoke, so we ventured to open the door. In the hall, another smell greeted us. Not thick smoke, but the scent of something burning, maybe?
Grey's Anatomy: Disability Representation Series: 10x15 - Throwing It All Away: This baby isn't out there contributing to society. He's not going to the office of baby 9-month-olds from 9 to 5 and bringing home a paycheck. That does not mean he doesn't need to be loved and held and accepted.
In The Time Machine: At this point in history, the internet didn't exist. We knew a maximum of 60 kids and 2 teachers would see these videos (all of whom either my sister or I knew) which we were fine with. Now, I want to share them here, with the knowledge that there are little kids out there who have CP and have gone through difficult surgeries and recoveries.
Like Looking in a Mirror: One of the coolest things I have found about having CP is that it offers an automatic connection to a community - even down to our physical features. Look at two people with CP and you will see similarities.
What You Need to Know About Blogging About Your Disabled Kids: Ask yourself, does this post, or this blog, respect my child and their dignity? Does it respect my child's community?
3 Things Disabled People Aren't Required to Provide the Nondisabled Public: Many times, we, as disabled people are looked upon to educate the people around us (at their demand.) The reality is, we do not exist to educate the nondisabled population.
What You Need to Know About Pushing Someone's Wheelchair Without Permission: When I was nineteen, I traveled out of the country for the first time without my parents. Once the plane landed, a man retrieved my wheelchair from where it had been stored during the flight. I got in while he held it steady. I buckled myself in, and before I had time to think or react, I felt myself being pushed - not by my sister or friends (who I had traveled with) but by a strange man I had never met.
The Thing I Regret Most So Far: Just because I can reframe negative things in a more positive context does not take away their impact and it doesn't mean there are not aspects of my life and behavior that I do, deeply regret. And though I don't often share about this, I feel it's important. Because I'm sure I'm not the only person with CP who has also struggled in this way, and I want anyone out there who is struggling as I have to know you are not alone.
The Person I've Had the Most Intense Romantic Feelings For: Some of you may be wondering why I've been posting these anecdotal stories that don't necessarily have to do directly with my CP. It's because I think it's important to know that disabled people are complex and unique. We all have our own stories. And we, as human beings, share similar feelings and experiences with disabled and nondisabled people alike.
From a NICU Baby...to my friend...a Soon-to-Be NICU Mom: It's such a unique perspective, to be sitting on the other side of this experience, as a once medically fragile preemie myself, and to be able to cheer on my friend, who is a day shy of 26 weeks (still pregnant) with her little one.
Self-Identifying as Disabled: The word disabled, apparently, makes people super uncomfortable. Uncomfortable enough that recently, I've had my identity first language (disabled) changed to person first (person with a disability.) I've had people read things written by me where I clearly identify as disabled, and they contradict my words: "She's not disabled she's enabled." In this case, they found "enabled" to be more positive language.
CP and Christianity: One thing that very much attracted me to this church was the freedom in it. People were encouraged, not only to sing, during the worship time, but to move around. People jumped up and down, or danced by themselves. Being quite short, and having the lyrics of the songs projected on a screen at the front of the sanctuary, I was often drawn there out of necessity, so I could see the words without being blocked by tall people. But that's when I began to be approached by fellow congregants after the service, who told me how inspired they were to see me during praise and worship. Now, I wouldn't call what I was doing dancing, but I definitely moved and it was this that caught people's attention. They commented on how inspiring it was to see me dancing or standing, or anything, really. Anything that had to do with my physical body, and what it could do.
Letter to My Younger Self: Listen, I know your biggest dream right now is to leave every single vestige of CP so far in the dust that you never have to think about it again. I know you still think if you work hard enough, you'll be able to walk without crutches. I know you think that will solve everything. That it will make you lovable. Let me tell you something, though (and I know you'll roll your eyes, but hear me out. I'm you, so I know you pretty well.)
Thoughts on the ADA: It would be impossible to account for every single microaggression and example of ableism I have experienced, but let me give a recent example. Last month, I went to the bank to deal with some super sketchy looking stuff happening with my bank account. My youngest brother not only drove me to the bank, but came in with me because he "just wanted to see how they handled this." I got a very competent teller, who set straight to work, figuring out what was going on with my account. Before we left, though, the teller had to call his boss over to address something or another. Instead of looking at me, this man looked at my 18-year-old brother, and talked to him the whole time. Even though I was sitting right there looking at him, and it was my bank account, and I was answering all his questions while my brother listened politely, but never commented.
CP and Friendships: I remember one friend, in particular, who I started getting to know around five years ago. They were the first person I remember making a conscious choice not to disclose my disability to right away. Three months later, when I shared a piece of writing where I mentioned it, they responded simply, "You never told me about the Cerebral P." That was it.
Insight on My Trach: I still have the scar - a couple inches long in the center of my neck - and shaped like a smile. It's an identifying characteristic for two little girls who dressed and looked so alike that in certain pictures even we can't tell each other apart.
Poem: What Happened When I Spoke Out About Damaging Disability Representation in the Media: I hear, / "It doesn't matter / That we are the heroes. / That every single storyline that / A character like you possesses / Is steeped in condescention / And stereotypes. / That you always need helping / And saving, / Because someone like you could never / Help / Or save."
Tonia's Big List of Resources for Learning About Disabilities: A comprehensive list of media and social media accounts of disabled people, updated as I find more books, movies, etc, that feature disabled people.
Startle Reflex in CP: Please Don't Scare Us on Purpose: 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.
PTSD Recovery Resource: Trauma Box: 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.
Advice: Dos and Don'ts for Interacting with Someone in a Wheelchair: 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.
Dealing with Ableism as a Child: My classroom teacher in fourth grade (the same year the ADA was passed) was a likely well-meaning woman, near retirement age. The minute I joined the class, I was known as “the smiley new student with Cerebral Palsy.”
POV and Accessibility in Everyday Life: After college, I had a job at a summer camp for three summers. Though they had an accessible stall in each cabin, their showers were entirely impossible to use. Just a wide open space enclosed by tiles. There was no way to safely use it. So I had to improvise and wash up at the sink during my break (including my hair.) They did install a bar, but the placement of it wasn’t what I needed, so the issue never really got resolved. The shower chair I had then didn’t have a back (was more a bench) and would not have been sufficient for the situation. Even if I had a shower chair that suited my needs, I would have still needed to navigate out of the wet shower somehow to and then find somewhere to sit, dry off and get dressed.