Thursday, September 29, 2016

Let's Talk About Speechless 1x02 "N-E NEW A-I AIDE"

The second episode of Speechless aired last night, and I wanted to talk about a couple of scenes. To lead off with some positives, I loved Mom paging the two emergency companies to gauge their response times and Ray asking about when their furniture would arrive because there were no chairs for anyone to sit in.  JJ looks pointedly at himself in his chair and shrugs.  I also loved Dad telling Mom that if she had a legitimate concern regarding Kenneth as JJ's new aide that was one thing.  But if it was a matter of JJ "liking him more than you, you have to get over it."  I really loved that Mom's primary focus was always JJ's safety and dignity.


Near the end of the episode, Maya finds that JJ and Kenneth have disappeared from where they were waiting outside Principal Sea Slug's office.  Maya has been planning to fire Kenneth for letting JJ play hooky from PT.  Maya is alarmed, saying that JJ "needs me for that!" and rushes off to the boys' bathroom, where she hears Kenneth assisting JJ inside the accessible stall.

Kenneth reassures JJ:  "It's okay, buddy, I got you," and puts him at ease.  For a few seconds, we are inside the stall with Kenneth and JJ, and we are privy to a modest view of Kenneth helping JJ transfer from his chair to the toilet.  Back outside with Maya, we hear Kenneth telling JJ not to make him guess next time, and not to hold it for too long otherwise there would be trouble because they had already borrowed the last pair of pants in his size from Lost and Found to impress the girls.  We hear JJ laugh.

My first reaction, upon seeing a scene like this was, "YES. This is reality.  This is LIFE."  I thought, finally a show that will show things like transfers.  We, in the disability community, are all-too-familiar with media that will not show moments like this for fear of making the able bodied audience "uncomfortable."  

While I rarely required this level of assistance in the restroom, in fifth grade I was recovering from a surgery, which made using the restroom quite a bit more difficult.  It was never my favorite thing.  Especially, in those early days, having to trust someone new.  But a calm, competent aide helps a ton.

I was glad to see that not only was Maya present in the restroom and able to hear the interaction between Kenneth and JJ (because what a vulnerable position) and as she has said earlier in the episode, his safety and basic needs are the number one priority.  I also loved that the show made it clear through his actions that Kenneth did read JJ's Care Book, learning how to safely transfer him, among other things.  While there were a few comical missteps (and while it's entirely unlikely that a school would hire an untrained aide) it was beyond important to show that Kenneth takes the job seriously and respects JJ.

Conversely, I wonder if there was not another way to communicate Maya's change of heart about Kenneth.  It's a rather vulnerable situation, and it's not something we ever see on primetime TV.  No one goes to the bathroom.  We certainly are not in the stall with them while they do.  This felt a bit like a combination of the Able Bodied Heroes and People as Props Common Inspiration Porn Themes happening here.


The other scene I need to talk about is one that takes place earlier in the episode.  In this one, JJ has disappeared with Kenneth, while his physical therapist is waiting at the house to charge the DiMeo's for "her time," regardless of if she worked with JJ or not.

So, Maya calls youngest son, Ray, in, and tells the therapist to "go" and "heal him."

Outside, the therapist has placed a single orange cone several paces away from Ray.  She tells him it's okay if he can't make it all the way to the cone on the first try.  Ray says, "I think I can manage it," and begins to walk.

[Image is: a single orange cone on pavement, like the one Ray walked to.]

The therapist stops him, with a worried, "What are you doing???  Just walk how you normally walk."

He says, "This IS how I normally walk."

"Oh no," she says, "This is all wrong."

Then she begins to critique Ray's gait and give him specific instructions that feel (and look) awkward to execute.  Upon trying to take her advice, he reaches the cone, and then turns around and screams at her, "WHAT HAVE YOU DONE TO ME???"  Ray is so bothered by this, we see him looking up Walking Videos on YouTube and sharing the therapists assessment with his family.  Maya says everyone knows all about Ray's gait already. It's not news.  Later, he talks to his crush at school and she invites him to walk her to class.  He instantly tries to walk "correctly" remembering the therapists instructions, but instead hears her criticizing him.  He tells his crush to go on without him and yells "WHY DID YOU MAKE ME WALK???"

I'm going to be honest and say that my first reaction to this scene was not positive.  Why?  Because this is our life as people with CP.  But instead of letting JJ represent the reality of a scene like this (which would have resonated SO MUCH) we watched an able-bodied child cope with having his gait corrected.  It felt like our experience having our natural gait critiqued and corrected did not hold weight or validity when we experience it, but only when someone nondisabled does.

While I understand it as a storytelling device, I don't think it was necessary to portray it this way.

I was just talking to a friend recently about my experience doing a gait lab as a child (after that big surgery in fifth grade.)  The doctors put all these sticky things on you, you're not dressed in too much, and you're barefoot, so you're cold, and you have to contend with how the floor feels on the soles of your feet.  Plus, you KNOW all these people are watching you and comparing your gait to typical people.  They are judging you against impossible standards.  So when we hear well-meaning comments like, "You can walk better than that," it felt so jarring.

Because yes, we COULD walk better than that.  If we were dressed properly. if we were allowed to wear shoes, if we did not have weird things stuck all over our bodies, if we were not being stared at, judged, and compared to an unreachable standard.

I'm not saying the scene didn't do a great job explaining how awkward it feels to be in that experience, because it does feel just like that.  And it does make you just that self-conscious about how you move in the world.  But it's an experience I relate SO closely with having CP that seeing it portrayed by someone without it just felt...wrong.

I am trying to give the show the benefit of the doubt.  It is one episode (and only the second ever) and we may very well see JJ in therapy one of these weeks.  I know I would love to see this aspect explored more.  Clearly, there was a reason JJ skipped therapy.  Because this was not a one-time experience for him.  This was a constant experience, probably from the time he was a toddler.  And he needed a break.

I want to see those moments from his perspective.  It was the reason that the standing ovation scene in the classroom in the Pilot episode was so effective.  We saw JJ dealing with it, knowing it was his reality.

Did you see the show this week?  What was your take?


Don't forget to connect on Facebook

Monday, September 26, 2016

Let's Talk About the Effects of Forcing Gratitude

A few months ago, I went to a surprise retirement party for my aunt.  On that day in July, I rode with my sister, my brother and my mom the two hours north to the cabin where the party would be held.

We sang along to In Your Eyes by Peter Gabriel, and had a few hours to kill before the party.  So, we hung out at Mom and Dad’s cabin a few miles away from our aunt and uncle’s.  My brother picked wild raspberries and brought them back for us to try.  He took pictures of Mom’s flowers in front of the cabin for me, since I could not balance and use my camera with my crutches.  Mom even took Tara and me for a ride on the UTV to see all the land around the cabin.  Mom was great, giving me a heads-up about where the ground slanted and giving me explicit directions when we walked anywhere.  When she began pushing my chair outside due to the terrain, she paused and said, “I’m sorry.  Is this okay?”  Small things, to most, but to me they felt huge, and made my navigating that much easier.

When we arrived for the party, my aunt was completely surprised - a success - and she had a yard full of friends to visit with.  Some had known Tara and me when we were babies and remembered Tara accompanying our aunt and uncle to visit them while I was still hospitalized as an infant.

As with every time I traveled, I had to think of accessibility.  I had brought my wheelchair for this venture, because I knew the cabin could accommodate it.  It turned out, though, that the party was held out back and Mom suggested using the chair outdoors and my crutches indoors as there was a giant deck stair to surmount with no railing on the way into the cabin.  My cousin was fabulous about lifting me up the step as needed.

I had been seated at the end of a picnic table with my sister, brother, Mom and Grandma.  Eventually, I noticed Tara wasn’t there anymore.  I also had not gotten a chance to visit with my aunt.  I thought they must be inside the cabin, and set out to push myself through the grass to the giant step.  On the way, I figured I should use the restroom.

I was on the lookout for my cousin, when I spotted Tara and my Grandma on their way out the back door, carrying three plates of food between the two of them.

“I was just looking for you!” I said to Tara, feeling relieved.

“We were getting food for all of us,” she answered.

I was surprised.  They hadn’t mentioned going inside to get food, and thus, I had not asked them to bring me anything.  However, both knew that the idea of me managing a flimsy paper plate laden with food while using my crutches was impossible.  So, they had thought ahead, considering me.

[Image is: Me smiling and pointing to a raspberry jam bar I am about to sample.]

“Oh!”  I said.  “Thank you!”

From beside me, a woman spoke up - one of my aunt’s guests - but a stranger to me:

“Oh!!!! They brought you some food!  That’s so nice!  That’s so nice of them, isn’t it?”

I couldn't respond.  By now, I was too busy concentrating on navigating the step with my cousin’s help.  Still, her remark stayed with me.


As a disabled woman, I hear comments like hers all the time.  While my family does not push me to go above and beyond in expressing my gratitude and accepts my “thank you” as legitimate and sufficient, it’s the random witnesses who urge me over and over to consider just how nice they are being.

But is it nice?

Really think about that.

Is it nice to bring someone food who cannot access it themselves?

Is it nice to fulfill someone’s basic human need?


In the days following, I experienced the effects of this woman’s words.  I felt emotionally raw and degraded.

Now why not focus on all the great ways my family and others were there for me?  Why give that one comment time and energy?

Well, the truth is, I tried very hard not to.  I did reflect on all the ways my family helped me, and told them how much difference it made for me.  I knew this one woman was spouting nonsense.

I was grateful.

I had said thank you already.

I didn’t even know her.

However, when these comments recur, they become more and more difficult to ignore.  Remember, I am sharing a single example, but this is something that happens to me often.

So, even though I know it was a ridiculous comment, my inner-voice started second-guessing the situation:

Well, they didn’t really have to bring me food…  I had snacks with me.  I would have been okay without.  It’s not like I would have starved.  Missing one meal wouldn’t kill me.

Did I make it super clear how much I appreciated that they thought of me and brought me food, even when I didn’t ask?  That was above and beyond…

Am I ungrateful?

These thoughts can erode a person’s sense of dignity.  I am lucky to be surrounded by family and friends that can push back against those doubts with me.  People who can echo my own feelings, having experienced them too, and reassure me that the woman in question was out of line.


So, you’re out and about, and you witness someone helping a disabled person.  You want to comment, take a video, or start an internet meme that draws attention to the helper for going above and beyond.

Before you do any of those things, though, I would urge you to pause and consider.

Instead of identifying solely with the person helping, try to put yourself in the position of the one being helped. If you had your hands full, and were so weighed down with grocery bags that you needed a hand getting them to your car, would you want a passerby commenting that your husband or your wife was going above and beyond by help you?  What if that person would not let go of the small act of kindness and kept harping on it, letting you know that your level of gratefulness was not sufficient.  Because helping you is a big deal.  Because you are you.  And because anyone who goes out of their way to give you a hand is a saint.

How would that feel?

Uncomfortable, right?  Maybe a little bit gross?  And probably entirely unnecessary.  You’re an adult.  You don’t need a nosy passerby to prompt you to express your thankfulness in the way they think you should.

Know that those of us with disabilities are painfully aware of each and every time we are helped.  We know it isn’t always easy on those who love us to assist us in the ways we need.  Because of that, we definitely appreciate help when it’s given.  Every time it’s given.


We help each other in my family (disabled or not) because it is what family does.  While I need help more frequently than the average adult, I also give help.  I have gifts and talents and time that I give to family and friends.  Yet no one calls me exceptional for that.

My need for help, though, is viewed as exceptional.  My needs are referred to as “special.”  While the term “special needs” can denote a need for accommodations (particularly in a school setting), it also insinuates that my basic needs are unreasonable.  So anyone who assists me with those needs is seen as amazing.  Meanwhile, when nondisabled people receive help with daily tasks, it is viewed as simply lending a hand.  Amythest Schaber says: “Disabled people don’t have special needs.  We have very reasonable human needs...The need for accommodation isn’t a ‘special need.  It’s a basic human right.”

I am fully human, and as such, my need for help is fully reasonable.  Pushing me (or any other disabled person) to be overly grateful for the fulfillment of our basic needs implies a fundamental lack of respect for disabled lives.

Let my gratefulness be sufficient, just as yours is.


Don't forget to connect on Facebook

Monday, September 19, 2016

Let's Talk About Faith Part 16: Conclusion

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission / Prayer / TheOnly / Work / Leadership / Bible Study / Mental Health I / Mental Health II / Mental Health III /

Talking about faith for the past few months has been difficult, cathartic and necessary.  In order to change how people with disabilities are received in a church or other faith-based environment, I felt I had to open up and share the reality of what my experience in church has been like.  And while there have been glimpses of acceptance and opportunities to be a part of things, it has mostly been painful.

Nearly a decade after setting foot in a church, speaking about Christianity feels a bit like ripping a band-aid off a gaping wound.  I feel vulnerable and judged.  I feel unsafe and out of place.  While I understand that not all churches are places where we, with disabilities are singled out, that has been my experience.

So, what do I believe in now?

[Image is: a black and white closeup shot of me smiling.]


My beliefs have expanded since attending The Edge.  I no longer feel constrained by the narrow world-view that church preached.  While I feel oppressed by what the Bible says about my community, and I feel objectified by God, I believe in the universe.  I believe in putting out positive energy.  I don’t know if I believe in God the way a typical Christian might because my experience of God has been very different, and He does not conjure a sense of security in me.

I don’t believe the universe is an accident.  I don’t believe people are an accident.  I believe disabled people are meant to be here.  We have a right to live our lives, to draw breath, to exist in this space and to human rights and dignities that everyone in the majority possesses.

I believe that even when we die, we are not gone.  I believe that we leave traces of ourselves behind.  Echoes of our presence.  I believe that spirits can linger here long after death and I take comfort in that.

Today, if you ask me to pray for you, I will not deny you that.  I will appeal to Him for you because it is what you need.  I know what it is like to have something you are not comfortable with pushed on you, and I won’t do that.  I promise.  I still have friends who are Christians, who I love and respect, and we understand that faith is a tricky subject, so we take care when discussing it together.


One of the greatest things that has come from writing this faith series is the opportunity it provided for me to reconnect with Pastor Sarah.

We had not been in touch in twenty years, but while I was writing about my confirmation experience, I tried again to look her up.  This time, I found her.

She said, “I was just thinking about you!” as if no time at all had passed.  She has read this series and left vital comments which let me know that she, as a pastor, does not condone the negative things I experienced.  She has reminded me to trust my own heart and wisdom, even above those who respect me completely.

She has reminded me there are people in churches who hold places in authority who do love us as we are and don’t want to change us.


While faith is defined by believing in something you cannot see, I truly believe one of the greatest things I have developed in these ensuing years is a faith in myself.  For many years I refused to see myself as disabled.  I refused to say the word disabled, or even speak about the way my body was different.

Away from the constant message in the church that I must change this fundamental part of me, I have been able to accept my CP as an inextricable part of me.  I have friends with it as well as other disabilities.  I have community.  We affirm all of each other.  We are there for each other.

I don’t need to be healed to be whole.  In fact, if I ever were healed, I wouldn’t be whole.  I would always feel like something were missing.  Apart from the church, I am able to breathe in the truth, and know that I am enough.

Rachel Scott once wrote, “Create in me, the church, so that wherever I go, I will find sanctuary.”  Instead of seeking out acceptance from people in a building, I am creating sanctuary within myself, so I will always have access to a space that is both sacred and safe.


Don't forget to connect on Facebook

Monday, September 12, 2016

Let's Talk About Faith Part 15: Mental Health III

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission / Prayer / TheOnly / Work / Leadership / Bible Study / Mental Health I / Mental Health II /

By the summer of 2006, I was starting to come to church less and less.  Tara had already stopped going, and over time, the pull to be accepted faded and I found that I was attending church more out of obligation than desire.

My mental health issues remained.  While I was able to successfully resist the impulse to self harm, I still dealt with anxiety and my trauma could still be reawakened with the right trigger, even in the summer months.

That’s what happened one night in early June, as the young adults gathered for a Bible study on the book of Revelation in the basement of The Edge.


Studying The End Times (as the church called the end of the world, detailed in the book of Revelation) was the very last thing I wanted to do.  Tara had attended a few meetings with the young adults and we had all voted for what subjects we wanted to learn about.  Tara and I voted to study God and the attributes of a father.  Everyone else voted to study how God would destroy the world and every person who didn’t believe in Him in the last days.

For a person with anxiety, linked to a precarious sense of safety in the world, the idea that God would come back and be super mad at everyone who didn’t do every single thing He commanded sounded absolutely terrifying.

Part of this study (and the book of Revelation) details that before the end of the world happens there will be lots of different signs of things to come.  Everything from severe weather patterns to scary leaders who convince people to trust them but turn out to be evil.  In fact, everything in the news was something that The Edge attributed to God’s judgment and preparing for The End Times.

I don’t remember the specific purpose, but I know we watched a video on this evening.  This video depicted real little kids with guns in other countries and an actual honest-to-God execution caught on tape.  It was the execution that did me in and I knew I couldn’t watch anymore.  I was totally horrified.  Even though I couldn’t leave to go home myself, I went outside and walked around, feeling totally freaked out.  I couldn’t understand how anyone could watch something like that and remain calm.

After a while, a friend, Vanessa, came out and found me. She asked if I was okay.  I told her I wasn’t.

“That video...I just can’t even deal with it.  I have anxiety already and I just couldn’t stay there and keep watching.”  As with anything that sparked anxiety, my feelings about almost losing my sister were raw again as that was the most unsafe I had ever felt.  I opened up a bit about it and we talked for a while.  I shared a lot, and could not seem to stop talking about how afraid the video made me.

Just like that, everyone started coming out of the church.

“Who are you getting a ride with?  Liam?” Vanessa asked.

“Yeah.” I answered.

“Okay.  Just hang out here.  I’m gonna go talk to him.”

“Don’t make a big deal out of it.  I’ve dealt with this forever and he’s probably sick of it,” I cautioned her.

“Don’t worry.  I won’t.  I just think he should know.  You don’t want to drive all the way home with him not knowing, right?”

“No.”  I agreed.  “You’re right.  I don’t.”


“So, Vanessa told me you’re upset…” Liam began as soon as he was behind the wheel.

“I am.”

“Just because of the movie, or what?”

“That movie was ridiculous.  I can’t believe you guys even stayed for it.”  Liam was quiet, listening as he drove.  “It made me remember everything with Tara…”  I admitted.  “I got really anxious and it made me remember being anxious then.”

“Don’t you think it’s about time you let this go and got free of it once and for all?” he asked.

His comment had a familiar ring to it.  I remembered him urging me in a similar manner, to just get over a close friend’s death.  This was no easier to take.  Still, I tried to give him the benefit of the doubt.  Clearly he had never experienced mental health issues like these, or to this degree.

“I feel like letting go and getting free is like denying that anything ever happened.  It’s like saying that nothing was ever lost,” I said, thinking of our family and how we now had less of a sense of security and confidence in our health.

Liam’s response was swift and sharp: “That’s a lie from the pit of hell!”

I was stunned into silence.  He had never raised his voice at me before.  Eventually, I tried again, quietly holding my ground:  “Well, it feels true for me.  Seriously, why can’t you just be here for me?  How hard is that?  To just be my friend.  I just need support right now, not a lecture.  I just don’t feel like you’re being here for me.”

“I’ve always been here for you, Tonia.  Do you know how much I pray for you?”

“And I appreciate that, but I mean as a person.  As a friend.  I need you to be here for me without trying to fix me.”

“I refuse to stand with you under these lies you’re believing!”

“I’m not asking you to stand with me under any lies!  I’m just asking you to stand with me!” I insisted, feeling profoundly misunderstood.

“Well, how long do I have to do that before you’ll take the next step and get healed?”

His words stung like a slap.  Friends didn’t issue ultimatums for friends who were too slow to heal from life-changing trauma.  His words shook me, as I realized that even though he had really backed off on talking to me about physical healing, he didn’t see how it was equally harmful to push me into the idea of getting healed of other things.

“You know the idea of healing scares me.  You were there for that whole thing at the conference.”

“Well, I’m not suggesting you do that again.  Just that you, you know, move on.”

“I am dealing with this,” I said quietly, “at my own pace.  I think I am getting better, but slowly, and in private.  I know I’m not as affected today as I was when it happened.  But it’s as if it doesn’t count for you unless it’s the way you want it.  In public.  In front of people. With loud praying.  When you know I’m not comfortable with that.”

“This isn’t just going to go away…” he cautioned.

“No, it isn’t.” I agreed.  “Honestly, it feels like you only want to be my friend when I do what you want me to do.  When I was coming to church regularly and going to all the events and really involved, you loved hanging out.  Now, we barely see each other.  It’s like you’re only happy to be around me when I’m doing the exact same thing you are.  I feel like a project to you.  First, the goal was to get me saved, and then that happened and the next goal was physical healing.  That didn’t happen, but it just keeps going on like that.  The less I play along the less you like being around me.”

“Is that really what you think of me?” Liam asked, hurt.

“It’s how you’re acting.  You don’t want to be around us anymore.  And you just asked me how long you had to stand with me before I got healed.  What am I supposed to think, Liam?”

I felt embarrassed, ashamed and selfish.  I felt like I should have kept my fear and anxiety to myself and just dealt with it on my own.

After that, I came back to church even less frequently.  It was this conversation that allowed me to see finally that The Edge was not a good place for me.


Less than a year later, in the spring of 2007, some friends I had worked with at Still Waters Bible Camp were in town, and asked if they could come to church with me.  I had not attended The Edge in a long time, but I was still open to going as long as someone offered to drive me.

It was a weird collision of separate worlds.  Camp was a place I felt almost wholly accepted and church was a place where I felt the complete opposite.  Still, I was excited to introduce my camp friends (including Charlie) to my church friends.  They met Liam and Vanessa.

In the sanctuary, Charlie began making quiet comments about the nature of his chronic illness.  Dry one-liners.  (“You know, church would be such a great place to die.”)  I knew he meant what he said.  I also knew he often coped with humor.  So, we laughed.

Worship was great, as always.  There was not a sermon, but testimony-sharing.  But the thing I remember most vividly was the puppet show put on for the kids.  I had never seen anything like it at The Edge, as the children were usually excused immediately after worship to go to children’s church, which was held downstairs.

On that day, things were different.  There was a children’s program, featuring two puppets - Heart and Brain.  After church, my friends mocked the puppet show good-naturedly (but relentlessly), and collected dated tracts from outside the sanctuary on everything from the evils of rock music to why it was wrong to be Catholic.  They saw the funny side of these things.  Later, we went to lunch.

It was a nice day.  I had no idea that this particular day was the last time I would be at The Edge.

[Image is: Me and Tara, out to eat, after attending The Edge for the last time.]


In truth, it has taken years to articulate precisely why it was that attending with these friends was essentially the final straw for me.  There had certainly been other times.  Worse things had happened to me within those church walls and outside them while encouraged by friends from The Edge.

I think, though, it was seeing the church through other eyes that made the difference.  My friends from Still Waters were sarcastic and dry-humored, but honest to boot.  They were not afraid to call out the absolutely ridiculous things they were seeing.

More than that, though, it was occupying the space with Charlie.  It was hearing a dear friend speak about wanting to die in a church and knowing that no one at The Edge would ever be there for someone like him, in the serious moments of his life.  In the dark moments.  In the moments where his faith was not in question, but they would make him believe it was.

They would want him to believe harder when all of us who loved Charlie knew he believed deeply and fully.  His faith was not the problem.  The problem was if people around him ever treated Charlie as they had treated me, I would hate it.  I felt protective of my friend, and for the first time, strong enough to protect myself.

I was able to free myself once and for all from The Edge.


Don't forget to connect on Facebook

Saturday, September 10, 2016

Let's Talk About Speechless 1x01 "P-I-PILOT"

I have been holding my breath and have been cautiously optimistic about the new ABC comedy series, Speechless.  (Tune in on Wednesday, September 21st at 7:30 CST to see the premiere!)  It happens that the first episode is also currently free on Amazon and Hulu, so if you have either of those, and have no self-control, like me, feel free to check it out sooner!

If you do not want to be spoiled about the content of the premiere, stop reading now.

In the opening scene, we meet Maya DiMeo (played by the fabulous Minnie Driver.)  Mom is a big fan of 50% off breakfast coupons and MUST make a 10-minute-drive in 3 minutes.  She drives an impressively large and beat up van.  Jimmy DiMeo cautions his wife to evade construction zones and hilariously hands her a cup of hazelnut coffee.  He has one of his own and they both sip as she drives.  We see tween to young teenage children in the back seat.  The boy, Ray, is not excited by Mom's adventurous driving skills but daughter, Dylan, is just as feisty as her mom is and yells at people on the way.

They make it on time and pull into an accessible parking spot, only to be yelled at by a lady about their apparent lack of a "handicapped placard."  (Think this never happens in real life?  Check out Let's Talk About Accommodation-Policing.)  Maya unfolds a ramp from the back of the van and out wheels the fabulous Micah Fowler, who plays oldest son, JJ.  (Micah, like his character, also has CP!  Hooray, authentic representation!)  Mom gives Yelling Lady the what-for and then calls two kids out for gawking and laughing.  "These," she says, waving her arms, "need a bit of a tune-up.  But he's all there upstairs and he has a thing about staring.

JJ then gives them "the finger."  (Actually, he gives them "four fingers" but you try isolating fine motor movements with CP and see how easy it is.)  Mom says it's a "work in progress."  The family is all surrounding him, all have their arms crossed, ready to take on the world.  All of them have his back.  It is a beautiful thing.

Next, we see JJ and Ray in a...rather rundown looking house.  (Calling it a fixer-upper would be generous.  JJ and Ray talk about how bad it sucks and Ray gets blamed for JJ's comment.  JJ denies having said it - his face a picture of innocence - and Ray calls him a bully.  It is a nice, human moment, where the kid with CP can be (and is) a jerk sometimes, and picks on his brother, and not only the angel people THINK he is.

We find out that Mom has decided to move the family because she has found the perfect school situation for JJ.  But this is the kids' sixth school in two years.  And the house is a dump.  Dad is pretty proud of his house hunting AND money saving skills.  (Not mad about the legit depiction, if a bit exaggerated, of just how hard it is to make everything work financially when disability is added to the mix.)  In fact, we see all three kids sharing a bedroom (which I remember doing at one point!)

Sidenote: I love all of the natural inclusion of adaptive equipment here: JJ has a giant letterboard on his bedroom wall which he can use his light to point to and talk to his siblings.  We see that he seems to enjoy picking on Ray, and Ray doesn't like it.

{Image is: a dark background with several adjectives on it, some in yellow, some in white, all in ALL CAPS.}

Dad is dialed into something being up with Ray and they have bonding time watching the cars careen out of the steep driveways.   Ray says "That's glorious" and tells his dad he doesn't want to move.  Dad hears him out and Ray insists, about their plan, "I get to be right and you get to be lazy!  Our two favorite things!"  Hahahaha!  I love their dynamic and I love that Dad is paying attention to the fact that not all is right with Ray.

The next day, Mom and JJ go to some center for disabilities and he gets paired up with his new voice.  JJ is not a fan of Mom's jokes about how "He is 16 now, it's time his voice changed."  When he shakes his head and voices his disapproval, Mom says it means he is laughing, but JJ makes it clear that he is not amused.  JJ asks if his new voice is cool, and then meets the most over-the-top, trying-to-be-cool cookie-cutter woman there is.  She has caught up on all the lingo and read the Urban Dictionary.  She wants to call JJ J-Tizzy.  JJ looks horrified, and Mom cautions, "Oh, don't do that..."

Now, they are all ready for school.  They meet the principal - all about inclusivity fairs and sea slugs - and then Mom inquires about the wheelchair ramp.  The kids are seen using the ramp at the back of the school, which is obviously meant for trash pickup.  The principal insists it's appropriate access, and not just a garbage ramp.  Mom says it's a "garbage and my son ramp."  And then she gives a crash course on basic human dignity.  Mom tests the principal on how well she can identify the difference between trash and people.  Meanwhile, Kenneth, who seems to be a groundskeeper, unassumingly drops the C word and Mom would like it deemed hate speech.  (Kenneth says as the sole black person, the irony of being called intolerant is not lost on him, but being a member of one minority group does not preclude you from having harmful attitudes about someone in another minority group.)

My favorite scene is JJ getting a legitimate standing ovation for coming into class.  (Think this is over the top?  I once had a teacher who said, "Make way for the princess!" whenever I entered her class.)  JJ's teacher instantly freaks out when he realizes that (oh my gosh!) JJ can't stand up!  "THE STANDING OVATION IS INSENSITIVE!" he screams and all the kids sit down.  (Do I have an example for this?  You bet.  High school Humanities, our zany teacher has all of us stand up to pretend to be archaic statues.  Her eyes fall on me, still in my desk, and she says with a look of discomfort and mild alarm says, "Tonia, you don't have to.")  They have the student with the Deaf cousin present JJ with a JJ for President banner.  JJ asks why he would want him to be president as no one here even knows him.  "You're an inspiration!" the kid says and JJ is in the middle of cursing him out when Disney Princess Voice Lady bails on interpreting and instead says, "He's honored and he'll think about it!" and JJ is NOT happy.

Next time we see JJ, the family is eating dinner.  Disney Princess would like to leave but Dad is adamant that they have her until 6 PM.  She shares that JJ has decided she sounds like a fairy godmother and has asked that she turn several students into pumpkins.  JJ then picks on Ray some more and Fairy Godmother interprets and then asks JJ if his comments are necessary.  Then, she refuses to say "Bibbity Bobbity Boo" while Mom and Ray are fighting because "it won't add anything to the conversation!"  But Dad is there and solid in his insistence that it will, and in saying so, is insisting that Fairy Godmother do her job and not pick and choose what she will interpret for JJ and what she won't, and I love that.

Dad drives JJ and Dylan to the school fair, and he says he needs one of them to stay with the van, and asks what might be a good division of labor.  JJ gives him the finger.  (SO would not have flown in my house.  CP or not we did NOT give Dad the finger.)  Kenneth finds JJ waiting with the van and recognizes him from Mom's ramp rant.  He addresses JJ and JJ immediately notes that he sounds cool and asks if he wants a job.  Kenneth calls him Blindside Jr. and asks if he is hiring.  JJ asks if he wants to try it out and tests Kenneth on interpreting.  Kenneth not only does the job but responds to his statements.  Then he asks about taking some liberties with "Stop leaning on my wheelchair!" and JJ is all about it.

JJ and Kenneth find Ray trapped on a ride at the fair by some bullies.  JJ says that Ray needs help and tells Kenneth they should fight the bullies.  Kenneth asks how many JJ plans to take.  But JJ has an idea.  He calls everybody to the stage and tells them he is running for student body president.  JJ's teacher who was all freaked out about the standing ovation being insensitive yells that "THIS IS SUCH AN OPEN-MINDED COMMUNITY!"  JJ and Kenneth exchange a look and Kenneth says, "You should see them on Black History Month."

Sea Slug Principal is so glad they are staying and Mom immediately tells her none of rides at the fair are accessible.  (Go, Mom!)  Then, everybody takes a turn on the ride Ray was on.  Mom and Dylan rant together.  Dad would like to stay on the ride for a week to get some quiet.  Mom rides again with Ray, surprised that her kid who is scared of heights would go again.  JJ and Kenneth ride together and Kenneth interprets when JJ screams in fright.

Overall, I really liked the show.  I burst out laughing several times.  What resonated most for me were the scenes with JJ.  Him assimilating to school and coping with new (and awkward) aides.  I hope to see more consistent focus on him, rather than just a scene here and there.  I'd like to see him navigate school, friends, teachers and relationships.  The focus is on Ray a lot for this and I would love to see JJ as more than comic relief.

I loved all the times we saw JJ out of his chair, and doing actual real human things like picking on his brother, and helping him out when he was in trouble.

Can't wait to see this when it airs for real!

Have you seen the pilot episode of Speechless?  What did you think?


Don't forget to connect on Facebook 

Monday, September 5, 2016

Let's Talk About Faith Part 14: Mental Health II

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission / Prayer / TheOnly / Work / Leadership / Bible Study / Mental Health I /

Listen to the audio version here

I was known as “the smiley new student with Cerebral Palsy” when I was nine years old.  Even though that year was terrible.  Even though I often felt awful about myself. It had become expected.  Adults always told me, “You have such a positive attitude,” with an air of awe and sadness.

On one hand, my life was the only one I had ever known, and I was living mine just as everyone else was living theirs.  (None of the other kids got complimented for a content disposition, though.)  At the same time, no one knew just how much my smile hid, as I coped with a barrage of ableism.  I beamed kindness constantly because it put others at ease.  A pleasant expression could engage people.  It also absolved them, as I had a habit of grinning reflexively when my feelings were hurt.

At age ten, I self-injured for the first time after a major surgery, and a second time when I was thirteen.  I didn’t understand why I was doing these things.  Only years later, as an adult did I realize that I used self-injury as a means of controlling the pain I felt - both physical and emotional.

During the summer of 2001 through to the winter of 2002, I struggled with what was commonly perceived as the “sin” of self-harming.  I rarely let myself consider just how much church itself played a role in fostering the feelings of inadequacy, hopelessness, despair, and self-loathing that would eventually cause me to injure myself as an adult.


Six months after the healing conference, I took part in an outreach at a local park.   It was just the kind of thing I usually enjoyed.  But I started to feel the fingers of depression trying to pull me back down.  I began to doubt.

What if everything I’ve come to believe isn’t true, and nothing is really out there?

What if God isn’t real?  

These thoughts were crushing for me, particularly after being paraded around and berated for not having enough faith.  I had held onto the belief that, even if I did not possess the faith to be healed on earth, my healing would come in heaven.  Doubting God meant also doubting the existence of heaven.

It meant that I would be stuck in a body that was an affront to God.  Trapped within an eternally anguished mind.

I would never be whole.

I would never have peace.

I self-injured that night, and my anxiety was temporarily allayed by physical pain.  I also had tangible proof of my pain, so I could not smile it away.

I wore shirts that exposed my injuries to church, but no one noticed.  I had silently hoped they would, while dreading it at the same time.

Instead, I confessed what I had done by email.  For a week, I was too ashamed to look anybody in the eye and admit what I had done.  I confessed it as a sort of dual-sin, where the real secret was not that I had injured myself intentionally, but that I was doubting my faith.

I was not greeted with anything resembling understanding.  I was told by a fellow believer in no uncertain terms that I would go to hell if I didn’t believe in Jesus.  He also demanded to know where I thought Daniel - the friend I had recently lost to terminal illness - was if heaven didn't exist.  These reactions only served to increase my sadness and hopelessness tenfold.

After a week, I told Tara, and to my chagrin, she told Liam.  We had been hanging out late at his house with a group of friends, watching a movie.  I was still very much in the grips of depression, anxiety and shame.  When he gave us a ride home at around two in the morning, I realized what I was in for.  I realized he knew.

I didn’t feel relieved.  I felt ganged up on.  I resented Tara for telling him (even though, had the situation been reversed, I would have done the exact same thing).  Liam was deeply concerned, but, I thought, missed the point of absolutely everything:

“So, Tara told me what happened…” he ventured cautiously.  “Does this mean you want to die?”

“No,” I answered feeling more misunderstood than ever.  “It’s not like that.  It’ a distraction.  I got overwhelmed,” I confessed in a quiet monotone.  “It helped in a weird way, so that I wasn’t thinking about how bad I hurt emotionally.”

“You know, there’s a verse that talks about how our bodies are temples of the Holy Spirit. That we don’t belong to ourselves but to God.  It means that God doesn’t want you to do that to yourself.  He made you.  You are His good work, and by disrespecting your body, you’re disrespecting Him.”

“Well, I’m not even sure if God’s real, so…” I admitted, feeling empty.

Liam prayed for me, but I remained unmoved emotionally, and eventually he sang a worship song.  It was just the three of us in his truck, parked in our parents’ driveway at 3 AM.  The song didn’t cure me, but it did make me sure God was still around.  And I was able to go forward, resolving not to sin again.

Three months later, I wrote:

Dear God,
I’ve been wondering a lot about heaven.  What it’s like.  What we’ll do there.  Everything.  The Bible says in the last days, everything You made will be destroyed and a new heaven and a new earth will be made…  [It] says everyone will get a new body... I’ve always wondered if anyone will recognize me without CP?

My desperation to be healed stemmed not from self-hatred, but from a loathing that was taught in part within church walls.  In my heart, I knew Cerebral Palsy was an intrinsic part of me.  To separate me from it might make me socially acceptable, but it would also make me unrecognizable, even to myself.

It was for this reason, I often felt there was a battle raging inside me.  Did I forfeit this specific piece of my identity in the name of faith?  Was losing myself worth the price of a heavenly transformation I was not even sure I wanted?

Could I be me - with CP - and be loved anyway?


Eleven months later, I again found my life in turmoil.  Personal issues, losses, and not knowing how to deal with how I felt about my disability all added up, and I relapsed.

After the second time, I made a serious effort to attempt to understand why I was doing what I was doing.  For the first time, I looked into things I could do when I was feeling triggered.  Simply promising myself that I would not do it again was not working - it was obviously more complicated than that.  So, I made lists of alternative coping strategies and kept them close at hand.

I also made a decision that seems strange to me today, especially as a way to cope with the anxiety that led me to self-harm: I chose to get baptized.

Liam had been encouraging me to do this for awhile.  He said it was a way for me to start fresh.  A way to be delivered, once and for all, of my anxiety.

“We were baptized already, when we were two hours old,” I explained.  “Because weren’t expected to survive.”

“That wasn’t your choice, though.  That was your parents’ choice.  This would be different because it would be another way for you to recommit yourself to God.  To be cleansed of the past and all the things that hold you back.”

I thought about his offer, and a year to the day after I had hurt myself at age 20, I made the decision that I wanted to be baptized.  To do this, I had exactly one meeting with one of the pastors on The Edge’s rotating staff - Pastor Paul .  This was someone I had never spoken to before.  The meeting was quite somber, as he led me through Bible verses and explained the gravity of the choice I was making.  I never felt comfortable or confident enough to explain why I was doing what I was doing.  I thought that was best to remain between God and me.  By now another month had passed, and I was feeling more anxious with each passing day.

My new anxiety?

What if I drowned?

To me, this was not an unfounded fear.  At The Edge, they believed in fully submerging a person in a giant tank of water at the front of the church.  It was the approximate size and depth of a hot tub.  I have never been able to swim, and the idea of someone holding my head under water, even for a second, was terrifying.

The following day, I came to church, with my bathing suit on underneath my decidedly less fancy church clothes, and a set to change into after those I was wearing became soaked.

I gawked at the giant tank, wondering how on in the world I would even get in it.  There was no railing, just steps going incrementally higher.  The water was too deep for my crutches to even be useful (plus I didn’t want them rusting).

Pastor Mark was on duty that day.  I had only ever exchanged greetings with him - and this day was no different.  There was no discussion about consent or logistics.  When the time came for my baptism, he picked me up bodily and lifted me into the tank.

I was mortified.

I had no time to dwell over that, though, because after a few words were exchanged, I felt myself being guided backward and then my head being pushed down.  As I desperately held my breath, I heard Pastor Mark say, “We need to get it all the way in there!” while forcing my head down.

It, not you.  Even while receiving this sacred rite, I was dehumanized.

 I had a moment of panic thinking my worst fear was about to come true.

Needless to say, I survived.

I wrote an email to several close friends afterward.  It reads in part: I also want to take this opportunity to apologize to every single one of you.  Because I realize that not only did my decision to self-injure hurt all of you, but the decision in and of itself was an extremely selfish one to make.

All these months, I had longed for transformation.  I had repeatedly gotten the message that as I was, I was not enough.  In truth, that email in its entirety sounds nothing at all like me.  It sounds an awful lot like Liam, though.  He was charismatic and well-liked.  Liam was more than enough all by himself.  Without even knowing it, I had lost myself in the hope of being embraced.  I had traded myself for the hope of peace.

I experienced that peace for mere days, but self-loathing remained a loyal and unyielding companion.


Days after my baptism, I returned to college.  I again felt isolated, having no community of any kind.  Still, I did not relapse until I came home for the holiday break in December.  By then, I had been depressed for six months, and my reason for harming myself changed.  It was not about self-medicating my anxiety - it was about self-punishment.

I felt I deserved to be mistreated because of my disability.  I was assaulted daily with ableist words and actions.  And my gut instinct when someone hurt me was to reaffirm that hurt by turning it on myself.

I actually carried the object I had used to self-injure with me for a whole day afterward.  I didn’t use it, but in some unhealthy way, it helped me feel secure.  Like I was armed.  Even though I was arming myself against me.

Days later, Sally called and invited me over to her house.  We ended up talking, and I told her what I had done.

Sally asked to see where I had injured myself, and she gave it a kiss.  She prayed for me, and cried for me while I sat on her couch, feeling numb.

“I know you’re really against this, but I do think you should talk to someone,” she said gently, holding my hand.

“Even if I wanted to, I couldn’t.  I can’t drive, so I have no way to get there.  I wouldn’t know where to go.  I have to go back to school soon.  I have no job.  I have no money.  And even if I had money, it would show up on something at my parents’ house, because I’m still on their insurance.  If they see anything about it, they’ll want to know why I got help...and I just can’t talk to them about this.  I’m such a disappointment already…”

“I’ll drive you.  I know where you can go.  I’ll pay for it,” Sally said honestly, tears shining in her eyes.

“No, I can’t ask you to do that…” I said.

“You’re not asking.  I’m offering.  Honestly, I can see you’re overwhelmed, and I’m telling you I can take care of everything.  I can even stay with you in the room while you talk to someone, if you want.  All you have to do is say yes.”

It took some more convincing, but Sally kept her word and found me an appointment two weeks later.  In the meantime, even though she was going to TheOnly conference several states away, she called me to check in.

“How are you doing?” she asked.

“I’m okay…  Honestly, I keep thinking that the time I was at your house was a dream.  It feels too good to be true.”

Sally laughed gently.  “Well, I’m pretty sure it’s not a dream.  I was there, too.”

“What if….” I ventured warily.  “What if it happens again?”

“Then, I’ll be there for you.  You won’t be alone.  Okay?”



A week into 2003, my appointment was looming.  My return to college was also mere days away, and I kept thinking something was going to happen to cause these plans to fall through.  To me, the possibility of help felt as fragile as a house of cards.  I did not want to put too much faith in it working out, but it was literally the only glimmer of hope I had.

That night, Sally showed up, and I left my parents’ house.  But from the moment I got into her car, my panic started to show itself.

“I don’t know if I can do this.  Maybe it was a bad idea.  I’ll probably be okay back at school, you know?  It’s not bad there.”

My mind was conjuring all kinds of scary images: a sterile, white room that smelled like coffee and antiseptic.  A clinical voice.  That voice telling me there was something really wrong with me.  That voice telling me they could help me, but only via some painful procedure.  That voice telling me I was beyond help.

Sally just listened.  Then she said, “You can do this, and I’m going to be right with you.”

“Yeah,” I said, feeling short of breath.  “Yeah, but I still don’t know.”  The idea of sharing my personal struggles with someone whose job I thought it was to listen and judge them sounded beyond terrifying.

Sally took my hand in one of hers, and held it while she drove.  She talked to me some more and stayed very calm.  We listened to music and then we stopped at a Dairy Queen on the way, as we had extra time, and I didn’t even want to order anything, my anxiety was so rampant.  While I normally enjoyed the chocolate chip cookie dough or mocha chip Blizzard, that time I stuck with the standby I always ordered as a little girl: a small vanilla ice cream cone.

I barely tasted it.

The closer we got, the more panicked I felt.  I walked inside and waited with Sally in the waiting room.  I had brought recent pictures to share with her, and I remember we looked at these while the minutes ticked by.

When we finally were invited back into the office, I was beyond relieved to see that it looked not like a doctor’s office but like a living room, carpeted and comfortably furnished with couches and chairs.  The counselor (who was a Christian) reminded me of my grandmother.  These things made it exponentially easier for me.

While I sat across from the counselor, Sally sat unobtrusively in a chair by the wall.  In fact, she never spoke a word at all, but it was beyond comforting to have her there with me.  I filled out a piece of paper, checking boxes next to anxiety and depression, to indicate what I needed help with that evening.

Then, I talked with the counselor.  I opened up with her about my trauma and she listened.  She asked how I had dealt with what had happened, and I told her about the anxiety and depression.  How the depression in particular made me feel like nothing I did would ever be enough, and that coupled with the anxiety, it made me want to hurt myself.

“Not to, like, die or anything - just to cope,” I reassured her.

She nodded.  “That makes sense.”

“Oh.  It does?”

“Yes,” she said.

We spoke some more, and at the end of the session, she prepared to pray with me.  “I have some holy oil here that I can anoint you with if you’d like,” she offered, showing me the tiny jar.

“...You can if you want,” I told her, not wanting to offend this woman who had helped me so much just by listening.  Just by telling me my struggles made sense, instead of reaffirming the reactions I had already gotten inferring that injuring myself was outlandish, sinful or selfish.

“I think it’s best…” the counselor said quietly, “that I respect your hesitance.”

I blinked, surprised that she picked up on my apprehension and backed off, instead of plunging ahead, as those at The Edge were known to do.

Afterward, Sally was about to burst in the car on the way to drop me off:

“Wow.  I’m so proud of you.”

I squinted at her.  “Why?”

“Because you just talked to her.  You were calm.  You opened up.  You were really composed and you answered all her questions.  It’s not easy to do.”

“I felt bad for you, just sitting by the wall the whole time.  You weren’t bored, were you?”

“No way!  It was so cool to just be a fly on the wall and observe.”

As we parked, I took the time to look her in the eye.  “I don’t know if I’ve said this, or if I ever can say it enough, but thank you.  No one has ever done anything like this for me before, and I really, really needed it.  I think, just hearing somebody in a professional setting tell me I wasn’t overreacting really helped.  Somebody listening to me, like what I said mattered.  It was like I mattered, and I didn’t deserve all the hurt I’ve gone through...well, it’s just made a big difference.”

“You don’t deserve it.  I’m glad to help.  I’m glad I could be there.”

“Thank you.”

“You don’t need to keep thanking me.”

“Yes, I do.”


It’s been nearly fourteen years since that night.  And it hasn’t been easy.  There have been multiple times over the years where I have encountered triggers that caused an impulse in me to self-harm.  (Particularly during church youth group when a graphic video was shown of someone injuring themselves and the aftermath the next morning.  There was no warning about the content of this video.)

Many things have helped me cope in the ensuing years, and though none of them were learned in the church, I feel they are worth sharing.  The summer after April comforted me through the onset of my anniversary reaction, I bought a PTSD workbook and began to face what happened for the first time.  In the front of the book, it had a place for names and phone numbers for “safe people” to contact in the event that I was triggered by the material in the workbook.

While I never used the safe people while going through the workbook, I did transfer the concept to my recovery for self-harm.  I started speaking to specific people and asking them if they would mind if I called them to tell them when I was triggered.  I have not needed these people frequently - perhaps once every couple of years - but I do reach out to them.  They change as my needs and friendships change.

I also read a book about children who had experienced abuse and trauma.  While the book was not particularly well-written, one excerpt stayed with me.  In it, the author spoke about a child in therapeutic care who was visiting her family for the weekend.  On that visit, the child told her mom that she was having thoughts about hurting a sibling.  The little girl’s mother panicked and called the therapist, who explained that the little girl had been taught to verbalize her unhealthy thoughts.  If the child verbalized them, she would not act them out.  Secrecy was where the damaging behavior could thrive, and without it, she was a much healthier person.

Though my situation was very different, I internalized that passage of the book and made it work for me.  Today, I contact my safe people to tell them I am triggered and admit to any other unhealthy behavior linked to self-harming, even if I have not hurt myself.  These things help to keep me safe.

I share this because self-harm is not widely discussed or understood.  I think it’s important to share the real issues I faced while attending church.

Countless people have offered to pray for my physical healing, heedless of the message it sent:

That I was broken, worthless and incomplete.

While many people in the faith community made a negative impact, Sally stepped up to help me. This set me on the path of healing that I can proudly say I am still on today.

You may never know what long-term effects your actions will have on those around you.

If a loved one opens up to you and shares that they have self-harmed, you being there for them just may make all the difference.

And if you have struggled with self-harm, know that you are not alone.

There is hope.

Self harm for me, was about many things, but mainly, it was about control.  I craved having control over when, where, and for how long I experienced pain, so it was no longer a random onslaught.  So it was predictable.  So I could say "enough" when it got to be too much.

Today, I know that I exert just as much control over my pain by choosing not to hurt myself.  By being vigilant about my triggers, I am being smart and taking care of myself.  Every time I offset that urge for a second, or a minute, I am in control.  By reaching out to someone, by being honest, I reaffirm that I am worth loving, and that I do not deserve the abuse that I experienced.

While I will always struggle with these impulses, it's what I do with them that matters.

[Image is: My arm with the word LOVE, flowers and a heart drawn on it.  Participating in a To Write Love on Her Arms event in 2010, which raises awareness about self-injury.]


My enemy lives
Within me
Along with my strength
To fight it.
If I can keep 
Everything will
Be all right.
If I never think I
Beat it.
If I remember
I have the power,
All will help
Me in deciding
Not to hurt
Instead of

written January 30, 2010


Don't forget to connect on Facebook