Monday, August 22, 2016

Let's Talk About Faith Part 12: Bible Study

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

All throughout my years in church as an adult, I had experience with Bible study.  I attended one on my community college campus as a part of the Christian Student Organization.  I even led one once, with help from Liam.

More often, though, I was a part of young adult Bible study as a part of church at The Edge.  Usually, these meetings consisted of praying for a long time, studying scripture and then hanging out late into the evening.

[Waiting for a ride to Bible study, 2003.]


It was after I left college that Bible study started to feel more difficult for me.  At the time, I could not pinpoint why being there sparked so much anxiety in me.  I only knew that one-on-one I felt secure, acknowledged and calm.  But put me in a group of ten or so people, and I shut down.  There were always people I did not know as well as others.  I felt I could not trust and open up to them.  So I stayed very quiet.  

The result of my withdrawing meant that no one spoke to me, and I felt overlooked and like I did not matter.  These feelings began in earnest after the healing conference in 2001.  Friends didn’t get my silence.  To be honest, I didn’t either.  I dismissed myself as a slacker for the times I skipped when my anxiety around them became too severe, and called my own struggles “dumb” and “sad.”  

As with other endeavors in or around church, I always did better if I felt I belonged and was welcomed and valued in that space.  While I felt safe around a few people at our Bible study, there were others I just didn’t feel secure around.

One instance after church, I think, gives a compelling example:

Liam had given me a ride to church that morning, as usual.  While he was busy before church started, I found a friend to visit with, who also attended our Bible study.

“Are you feeling social today?” I asked her.  “Do you want to do something with me?”

“No…  I have to clean and do laundry.”

“Oh, okay.  You’ve gotta be an adult sometimes, right?” I joked.

“Actually, if you can find a whole bunch of people to go out to lunch with, I’ll do that.”

“Oh…” I said, her words stinging and the implication clear: hanging out with me alone was not preferable.  

It hurt to be rejected, but I had dealt with this kind of thing my whole life, so I tried not to let it affect me too much.

Afterward, Liam had misplaced his car keys, and had to call his best friend (I’ll call him Judah) for a ride home.  Liam had gotten in the car, which held Judah, his wife, and Lisa.  I was last.  

I had handed one crutch into the car to Liam and pulled back just enough to catch my balance with one crutch when Judah floored the gas and peeled away.  The back door of the car remained wide open.  

I stood there, stunned, and well-aware of just how close I had come to being dragged or run over.  When Judah backed up seconds later, he had a careless wide smile on his face.  “I’m sorry,” he apologized, sounding anything but apologetic.  “I thought you were in already.  I thought I heard the door close.”

Judah’s wife asked if I was okay but no one addressed what Judah had done, or the fact that he continued to drive recklessly all the way home, seemingly showing off for the car full of people.


Around 2004, our large Bible study broke off into smaller groups, in hopes of fostering a greater connection and honesty within each group.  My small group consisted of a good friend, and two other girls.  One, Eliza, gave me a ride after my experience receiving unwanted prayer and being interrogated about my failure to use the elevator.  

“So, he basically stared me down the whole time.  It was really uncomfortable.”

“Why would you be uncomfortable?  He was just being nice,” she insisted.

“But it wasn’t nice.  He was, like, mad at me for walking past him.  It was rude.”

“Well, I think you’re just being paranoid,” she said dismissively.

Even though the conversation obviously was not going well, I persisted, wanting nothing more than to be understood.  I shared about how being prayed for intimidated and scared me.  I shared that I disliked the assumption that I must want prayer, even though I no longer went forward, consented, or indicated I wanted it in any way.

“...And I get that I’m being hypocritical.  I hate being viewed as a condition to fix, but I also really dislike even associating with others with disabilities at all because of the way we are lumped together and treated like we are inferior.”

“I think you’re settling," Eliza said firmly.

“I can see how you’d think that I was lacking something, because of where you’re coming from, but--”

“No, I’m not talking about physically.  I’m talking about emotions.”

“How can I ‘settle’ emotionally?” I asked, confused.

“You know what I mean….” Eliza insisted, like I was being willfully obtuse.

“No, I really don’t.  Church is still kind of new for me.  So some things I still just don’t get.  I honestly don’t understand how I can ‘settle’ emotionally.  Like, what does that mean?”

“It’s like…  You don’t want to change.  You like things to be just the way they are.  They could be different.  Physically, emotionally, whatever, you know?  But your sinful thinking is going to hold you back every time.  Until you decide you want to live differently, things are going to just continue this way.”

“I didn’t choose this, though,” I insisted.

“You said before you don’t even like associating with people who have disabilities.  The power to change it has always been in your hands.  God is big enough.  He could do it.  But you won’t let Him.”

“I told you already, I had a horrible experience getting prayer for healing.”

“I think that’s just an excuse.”

“It’s not, though.”

“You’re going to do what you want to do, obviously, and that’s fine.  It’s your choice, but I know what you really said.  I know the truth.  Even if you don’t want to admit it.”

The whole conversation was beyond bizarre, and every time I spoke, Eliza was intent on looking for inconsistencies in what I was saying to prove I wasn’t being honest with her.  It ended on her terms, too, with her trying to get me to discount everything I said, and believing - still - that I was lying about all of it.

I spent the rest of the night feeling incredibly ashamed whenever I had to get up and walk anywhere.  I knew Eliza was there, watching, and thinking that I could be healed if I wanted to, but I just liked “settling.”  

We spent the rest of the evening filling out spiritual questionnaires at a restaurant while Eliza and another group member discussed their own personal struggles, actively supporting each other, while I was battling my own demons and they seemed not to care.

Three years later, in 2007, our small group had morphed again, and was meeting at my apartment.  Eliza was the only original member still there.  She and the rest were speaking honestly about how their weeks were.  I knew they didn’t want to know the first thing about what I dealt with - Eliza had proven that much in years past.  So I stuck with surface information, never delving too deep.

While we were still in a circle on the floor, Eliza spoke up, unprompted: “You guys want to know what my biggest dream is?  What I pray for more than anything else?”

The rest nodded eagerly.

“I really pray that God gives me cancer, so He can show how faithful He is by healing me.”

While the others spoke about how “awesome” her dream was and agreed, I attempted to close my mouth, which had dropped open in shock.  Besides the fact that I knew people who had lost family members to cancer and the very idea that she would “want” it seemed beyond I was, sitting across the small circle, with my less-than-perfect body.

I knew what she thought of me.  She had made no secret of it.  

That was the last time I allowed Bible study to be held in my home.


Today, it makes perfect sense to me that I had heightened anxiety in these group settings.  What does it matter if three people fully accept you if there are three more who really don’t value you at all?  What does it matter if you can’t actually count on the three people who accept you to call out the ones who don’t for their egregious endangerment and disrespect?

Does anyone there really respect or value you at all?

That was the question that circled in my head during most Bible studies.  I was there, but I felt invisible ninety percent of the time.  I watched everyone else support each other, but often I did not feel that love and support myself.  

My reality as a young woman with a disability just didn’t match their reality.  And some felt I was choosing a life disabled rather than embracing a life healed and whole, due to a lack of faith.  

As I write this, I am realizing that even though no one overtly asked to pray for my healing, they still were preoccupied by my lack of it.  


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Monday, August 15, 2016

Let's Talk About Faith Part 11: Leadership

Previously on Let's Talk About Faith: Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission / Prayer / TheOnly / Work /

From as far back as my days at Lakeview United Methodist, I had helped out at church, leading in small ways.  I also helped with youth group and the Family Table events at my aunt and uncle’s church.  My CP was never cited as an issue.  I was always welcomed to help and viewed as capable.

Once I began attending The Edge, I eagerly accepted when I was asked to sing on the youth worship team and help lead the youth group with the other young adults in the absence of a youth pastor.  I was young and profoundly inexperienced, but enjoyed being a part of things.  After working four summers at Still Waters Bible Camp, though, I became more serious about leading as a part of different teams.  My experience working at camp had given me a lot of confidence, and I wanted to step up and help in various ways.


Though I participated in helping team-lead youth group, I found it difficult to forge a sense of unity in our commitment.  I was often looking at a situation from the complete opposite perspective as the other leaders.  Where camp was very focused on making sure we were all coming from the same place, youth group leadership meetings were not.  It also started impacting my friendships.  Again, unlike camp, which was a place where I seemed to be able to balance friendships and the job, now my friendships seemed to evaporate, leaving us as solely coworkers.

Small groups were something that the college-age kids helped lead, and they consisted of four to five high schoolers.  We did some fun projects, but I felt myself holding back from sharing anything of substance.  I was sure parents of these sheltered kids did not want them knowing about the long-term effects of trauma on a person.  I found I could connect well one-on-one with the kids, but I was stunned when, after I asked about them, they would reciprocate:

“How are you?” they asked so honestly it took me off guard.  They were nearly adults, but not quite, and their genuineness touched me.  I would open up a bit, and admit I was going through difficult times, but I didn’t feel it was appropriate to share with them.  I wondered, though, if it was in their best interest that I was present.

Their answer shocked me and warmed my heart:

“Tonia, I’m so glad you’re there.  Small group wouldn’t be the same without you.”

As it turns out, though, my real niche was with the worship team.

[Image is: A black and white picture of me getting my face painted by one of the girls in small group, in front of a giant painted sheet.  Photo credit: Rebekah Bye.]


Singing was something I had always enjoyed, and so joining the youth worship team in the fall of 2005 just felt natural.  Liam was the leader (and the eventual youth pastor).  We had a couple other girls from the youth group on piano, drums and vocals.  A woman named Lisa joined Liam and me on vocals.

I loved singing on the worship team.  I loved finding where my voice fit and complimented the other voices.  I loved being with them on Wednesday evenings for worship at youth group (and sometimes Sundays).  It felt so freeing to me.  One of my favorite things to do was to grab a spare moment with our pianist (then just a teenager in the youth group who I’ll call Madelyn) and sing in the empty sanctuary before church or youth group, while all the other kids were running around outside.

It felt special.  And sacred.

But it was a change from my early days on the youth worship team.  Specifically, Lisa had a hard time adjusting to my being there, and my need for accommodations.  This created a more difficult dynamic.

One afternoon, Lisa and I came into the sanctuary together.  She sang into her microphone.

“This doesn’t sound right,” she said.  Then, inexplicably, she took the microphone from in front of me (on the single easily-adjustable stand) and sang into it.  “Ooh!  This one sounds a lot better.”

I was a bit startled.

“Liam!”  Lisa called to the back of the sanctuary, where he stood in the sound booth.  “I sound so much better with this one!”  She turned to me.  “So, can I have it?”

“No,” I said.

“Well, mine doesn’t sound as good.  And when I was a part of the other worship team last night, I used that mic.  It was the perfect fit for my voice.  This one will never work…” she scowled, indicating her own inferior microphone.

“Lisa,” Liam called.  “It’s gonna be fine.  You sound fine.  Don’t worry about it.”  Then (thank goodness) he did some magic at the sound board that satisfied Lisa regarding her microphone, so we could begin to rehearse.


The following month, we again came into the sanctuary and prepared to rehearse.  Lisa walked ahead of me to the only chair and prepared to sit.

“Lisa,” I said.  “That’s actually--”

My voice was drowned out by instruments tuning and people talking.

By now, Lisa looked quite comfortable in the chair I used to save my stamina.  Standing still was more physically taxing for me than walking, and it would only be a matter of several minutes before my legs would be shaking with the effort of keeping my balance, trying not to trip over cords and managing my microphone.  There was no way I could last for a two-hour rehearsal.

I tried again to get her attention, but to no avail.  Finally, Liam approached her:

“That chair is actually set up for Tonia,” he said uncomfortably.

Her mouth dropped open, indignant.  “Well, it was mine yesterday!” she exclaimed (lest anyone forget that she sang at church Tuesday nights as well, apparently, while occupying that specific chair.)   I arrived at the front and  waited for her to vacate the chair and I sat.  Then, I explained.

“If you need a chair, you can move one.  But I can’t, and that’s why there’s one set up for me.”

Eventually, Lisa did relent and got herself a chair to use, setting it directly beside mine.  Liam handed out the music we were going to go over, and upon seeing one song in particular, I spoke up happily:

“Oh, awesome!  A song I know!  I’m so excited!”

From beside me came Lisa’s voice, imperious and unmistakable:

“Oh, get over it…”

“What?” I asked, shocked.

An ironic statement, I thought, as she was clearly still bitter about my needing the chair she claimed for herself.

“Lisa, that was kind of rude…” Liam admonished lightly.

“Oh, I say that to everyone!”

But she didn’t, and we knew it.  Still we all did our best to move forward and focus on God, practicing the songs for later that evening.


Lisa and I never really did get along, and while there were definitely other contributing factors, I believe that ableism played a role.  There is no denying that our personalities clashed.  What sets these instances apart from an average difference of opinion, though, is that accommodations I needed in order to participate were being asked for, and eventually actually taken by someone else.

I can only speak from my experience of the situation, when I say that I suspect Lisa did this, first and foremost, because she felt she could.  The culture in the church, and the leadership in place allowed her to feel entitled to my accommodations.  Lisa asked for my microphone, took my chair and snapped at me in a derisive tone because she felt superior to me as an able-bodied woman.  She used these tactics to essentially “keep me in my place.”

Though I did not have much experience in outside churches, my experience at Lakeview had been altogether different.  This was, I believe, due to Pastor Sarah and how she led.  Everyone respected her, and we respected one another.  She carried herself with a quiet dignity, always speaking softly and kindly.  She did not tolerate disrespect.  Pastor Sarah cared about her parishioners.  She was invested in our lives.  She connected to each one of us and let us know we mattered.  Though there were mostly adults and elderly in Lakeview’s congregation, Pastor Sarah taught confirmation classes for the teenagers, and called the kids up for children’s time during the service to read them a Bible story.

Sarah showed love to everyone, regardless of color, gender, or ability.   She never drew attention to my CP.  No one else did, either.  But I feel sure, if they had, she would have instantly put a stop to it.

Conversely, at The Edge, the constantly rotating pastors were men.  Women were not allowed in leadership positions (such as pastors or church elders.)  Women were not respected as men were, and leadership never put a firm stop to discrimination when it occurred.  As stated above, there was a half-hearted correction, if any at all.

Lisa did not like me, and she made sure I knew it.  While ableism was not the reason for her dislike, ableism was a ready weapon she could use to enforce it.

My eventual discomfort around the worship team did not solely stem from my interactions with Lisa, but they certainly did not help me feel as if I belonged.  There were times we got along fine, even really connected.  There were times I felt like she truly “got” me.  But there were other times that played out as described above.

In the end, it was less about a specific person and more about an undetectable shift in the energy and focus of the church that caused me to feel displaced, even on the worship team.  It felt different there than it had early on, when I was drawn to the warm energy, the openness, the joy in the people inside.  Now it seemed all were focused on something else.  They were all unified in their goal, and I never quite got on board with it.

I started attending church less and less frequently.  To be honest, I didn’t miss it.  But I did miss singing.  I missed using my gift to praise something bigger than myself.  Something that loved me, saw me, and valued me, even if most of the people I went to church with did not.

In the years since, there have been moments when Madelyn (the pianist on the youth worship team, and also a co-leader of our small group) and I would worship together again.  In those moments, it truly is like coming home.  And though it’s been several years now, I have the fondest memories of worshipping with Madelyn.

The loss of someplace to worship each week - to sing - has been the hardest to come to terms with.  I have found sporadic peace in worshipping with Madelyn at a friend’s home, or at my own apartment.  We can let our guards down.  We have fun.  We know we are accepted and loved fully by one another.

Both of us have been hurt by organized religion in some way, but we have a safe place with each other.  In the privacy of our own home, we have worshipped with just a keyboard and lyrics from the computer.  Once upon a time, Madelyn, Tara and I even wrote our own worship song and sang it together.

I may not have felt a sense of belonging on the worship team at church anymore, but thankfully, I will always belong with my people.

And I have never stopped singing.


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Tuesday, August 9, 2016

Check out the Cerebral Palsy Panel at Transcending CP!

[Image is: a pile of colorful question marks]

Do you feel like you're the only one with CP?

Are you a parent with a child who has CP and you don't always know what to say or how to help?

Are you nondisabled and curious about ways you can be there for people with CP and other disabilities without overstepping?

This post is for all of you:

Get up to three perspectives at once from people living with CP.  Pick and choose which questions YOU want to know about, and check out our selection of links at the bottom of the post to connect you with even more awesome people with CP.

Monday, August 8, 2016

Let's Talk About Faith Part 10: Work

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission / Prayer / TheOnly

The summer of 2003 brought many changes my way.  I came home from college for good, and with no idea what I was going to do in the future, the pressure was on to find a job.  A friend of the family mentioned a Bible camp that was short-staffed and gave me the website name so I could apply.  I was shocked to be accepted right away.


I joined the staff at Still Waters Bible Camp in July of that year, as an assistant counselor.  As I had missed staff training, I was left only with the brief words of the camp director to guide me: “The core counselor will let you know what they need.  Just help them out.”

In truth, though, the first week I worked there, I felt more like a camper than a counselor.  That week, we had senior high girls. All of them had been coming to camp for years beforehand, and I had no idea what I was doing.  I felt intimidated and out of my depth.

The older campers played a lot of long, physical games, and I had been given no other direction.  I knew there was no way I could run around camp, and I couldn’t find the director to ask him what I should do.  Instead, I decided to offer my help in the kitchen.  With hindsight, I know this probably was not allowed, but I felt strongly that as I was working there, I should not walk around doing nothing while my coworkers were on duty.

It was working my second week there when I was paired with a counselor I’ll call Callie, who really let me have it during a break one day.

“I’m struggling to do everything, and I need your help,” she told me seriously.

“Okay.” I hesitated.  “I just need to know what you need.  I haven’t been trained.  I’ve never done anything like this before.  I was just told to help out where the counselors mentioned they needed me.”

“Oh, I had no idea.”  Callie looked shocked, and came up with a new plan on the fly:  “Okay, here’s what we’re going to do…”

We worked it out, and I was able to be a moderately better assistant for the remaining days of that summer.

The following summer, I was trained as an assistant counselor and it did wonders for my confidence.  Enough so that by the summer of 2005, I felt capable enough to work 10 weeks - almost the entire summer.  Also, I was going to be a core counselor for the first time.

It was during our weeklong staff training where I was reminded, in stark terms, that not everyone was comfortable around disability.  We were in the midst of a day of fasting, and had just finished praying for each other while standing on the stage in the chapel.  I had climbed the short steps up to the stage just fine, but hesitated on the way down.  It was the first time I had climbed them, and as is often the case, if nothing of consequence happens on the way up, I hadn’t thought ahead about the possible issues I’d face coming down.

“Tonia, do you need some help?” my boss asked, sounding completely unsure.

As I was in the process of figuring out how to organize my body - where my crutches and my feet needed to be at each level so I would not lose my balance - I could not talk to him beyond saying yes.

He stood there uncomfortably.  “Um….  What can we do to help?”

I was still trying to keep my balance.  I couldn’t deal with reassuring my boss that he didn’t need to feel awkward and neither could I articulate exactly how I needed his help while I was in the midst of trying to descend.  If you want the truth, I had gotten used to a couple of coworkers (Callie, among them) who would extend a hand, or blatantly offer to lift me down if something looked perilous, so I could have the option of safety in immediately available, instead of having to figure out how to articulate what I needed to while trying to figure out how not to fall.

Knowing my boss was this uneasy around my disability made all of my previous feelings of inadequacy rush back.

“It’s okay,” I reassured him quietly.  “I got it.”

And he stared, and kept staring as I sat down on the stage, and scooted down the steps on my backside, as I had not done since I was a toddler.  I was so embarrassed that I ended up crying in the staff bathroom, convinced I should not be there at all.  Convinced that my boss should have hired someone else, someone able to climb stairs.

I also dealt with a certain coworker who asked me every year, “What’s your condition?”

It made me feel put on the spot.  Singled out.  Different.  I hated it.  But as this coworker was actually several years older than I was, I felt compelled to tell him every year that I had CP.  Then I endured his follow-up questions about what exactly that was, and how it affected me.

Being untrained when I first arrived magnified my insecurities brought on by my disability several million times.  Not being used to advocating for what I needed, I asked once, for bars to be installed in the showers, and they were.  But they were in the wrong place, and there was no way for me to dress and move safely on the wet surfaces, which kept me washing up at the sink all four summers I worked there.  Many of my coworkers were fantastic about helping me, but my boss’s discomfort around my disability made me feel like I did not belong.  And while I expected (and got) comments from children about my crutches and kids “talking about me in a bad way” I should not have been interrogated by a coworker about my disability at work.


Much like my experience in Costa Rica, though, I wasn’t alone when it came to doing my job with a disability.  Over the years there were a few coworkers who were also disabled or chronically ill, and it was often we, who created access for each other.

During my second summer, the staff and campers were up at the rec building one evening (which was as far away from the cabins as we could possibly get.)  It was an older kids week, which meant they had played night games.  All the lights had been out for a prolonged period of time.  When they were flipped back on and my eyes adjusted, I realized just how pitch black it had become outside.

[Image is: Me hanging out in the rec building while working at camp.  I'm wearing a dark green sweatshirt and smiling.  Photo credit: Joy Brekke]

At the time, I had no concept of my own place blindness, I just knew that this was going to be untenable.  There was no way I could safely navigate back to my cabin and over obstacles like uneven ground (with holes), piles of gravel and most disturbing, I would have to cross a bridge over a moat filled with sludge to get back to the girls side of camp.  Dealing with all those things in daylight was enough of a crapshoot.  Dealing with them when I could not see my hand in front of my face?  Impossible.

“I seriously can’t see anything.”  I said, laughing nervously.  “I have no idea how I’m going to get back.  This is gonna be terrible…”  I was rambling, and a bit panicky.  I knew if I didn’t have some kind of help, I would be lost or injured.  Probably both.

All around me, counselors and campers were confidently striking out into the darkness.  Then, I heard a familiar whir behind me.  A co-worker I’ll call Thomas, who also had a physical disability and used a scooter to get around camp, came up beside me.  I thought he might offer to lead the way, having me follow his tail lights, as he had sometimes done in the past.

Not this time.

Instead, Thomas pulled up beside me and maneuvered himself to one side of the small seat.  Then he said, “Get on.”

Both of our disabilities impacted our balance, so I hesitated, asking if he was sure.

“Yes,” he said.  “Come on.  Somebody will carry your crutches.”

I didn’t expect the heckling we both received from other guys on staff.  Calls of “Ooh, Thomas!” and “All right, buddy!” made my cheeks (and his) burn hot.

“I’m just doing a sister a service!” he insisted.  And with that, we headed carefully out into the night.  Each of us hung onto a single handle.  We didn’t fall off or crash into anything.  I got across a good portion of the grounds with his help.

There was also a young coworker I’ll call Charlie, who lived with a chronic illness.  I had first met him when he was a camper during senior high week.  By my third summer there, he had joined the staff as an assistant counselor at seventeen.  Charlie was funny and snarky, but also kind and genuine.  The first to hold a door for me if I needed it.

On the way back up to camp with coworkers that year, everyone was in a rush to leave one of the staff member’s houses and get going.  I was rushing, so as not to hold anyone up.  I grabbed the thick stair rail with my right (more spastic) hand, which I had also failed to dry all the way after washing it, in an effort to save time.

I was already hanging onto the railing when I realized I could not safely grip it.  Not even enough to sit down and scoot.

“Uh...guys?” I called, seeing all ten or so of them gathered at the foot of the stairs in the entry way.

“Oh, do you need help?” someone asked.

“Yeah, I do.”  It was either admit I needed them, or take a nosedive down to meet them in the foyer.

There was a murmur of voices.  Someone mentioned “piggyback ride” like it might be conjured out of the air.  Then, Charlie stepped up.

“I’ll help you, Tonia,” he offered, like a gentleman.  And he crouched in front of me, so I could hang onto his back.  He was possibly less muscular than I was, and his slight body shook with the effort, but he successfully carried me down the stairs.

Again, the only one to step up and help me.


It probably sounds like I was a burden and a mess, right?

Zero experience.  Little self-confidence.  But the truth is, working at camp gave me some valuable things.  It magnified my strengths.  I already knew I was good with children, but this allowed me to see that even the older kids were drawn to me.  They often said they were glad to speak to me because they felt like I was “real.”

While on staff, we had to lead devotions.  I had to do this at least once a week as an assistant counselor and more as a when I was a core counselor.  While my cohorts were more versed in the Bible and Biblical characters and stories, I found myself sharing stories connecting faith to real people who struggled.  On topics like how to cope with fear, and on forgiving ourselves when we sinned.

My own experience with trauma helped me know what to do when we had a tornado scare one night, our cabin full of eight to ten year old girls who were now terrified to go to sleep.  I remembered a friend on staff telling me they had done something similar and ran it by the core counselor before inviting all the girls to move their mattresses onto the floor so we could be closer to one another and they could feel safe.  Once we did that, no one was crying, they were all less afraid, and able to fall asleep.

My first week as a core counselor, I was paired with a capable, competent and happy assistant that I felt really comfortable with.  I was able to ask her to hand things out while I led devotionals, retrieve a misbehaving child and bring them to me.

One such instance sticks out in my mind.  That week, I had primarily nine to eleven year olds in my cabin.  The odd one out was a fourteen year old, who had been recently adopted from overseas.  Once, during a game, this older teenager grabbed one of the little girls physically, which was not allowed.  My assistant counselor was quick to intervene as I requested.

We had been trained that physical aggression was not tolerated and that it needed to be dealt with swiftly and appropriately.  That meant an unpleasant but short chore like sweeping the floor of a room we were in.  I planned to have her do just that, but first I wanted to talk to her.

Back home, I’d had experience spending time with kids from hard places.  This girl’s behavior seemed familiar to me and I knew there might be more to it than an older child bullying a younger child.  I suspected her behavior was what had worked for her and helped her survive in the past.  I sensed that she had likely grown up unable to trust adults to intervene for her.

“Come here, please.  I want you to talk to me about what happened.”  I kept my tone firm and my words direct, as English was not her first language, and I wanted to be sure she understood me.

“They were teasing me,” she insisted, her face set.

“She was teasing you so you grabbed her?” I clarified.


“Well, we don’t do that here.  We don’t get physical with people.  Here, if someone is teasing you, you tell an adult.  So if this happens again, I want you to come and tell me.  Don’t hurt the person.  Come and tell me what’s happening, and I’ll help you.  That’s what I’m here for.  Does that make sense?”

“Yes,” she said, quiet and stoic.

“Okay.  Now I’d like you to go sweep the floor.”

Days later, she remembered our talk, and asked me to intervene when two girls were bothering her.  She did this calmly, with no escalation whatsoever.  I wanted her to remember she could start trusting adults in her world to be there for her.  I jotted down a quick note, praising her, and handed it to her so as not to embarrass her in front of the younger girls.  And, that afternoon, I bought her a Pepsi from the canteen and gave it to her.

“Hey, I wanted to give this to you.”

“Why?” she asked.

“Because I wanted you to know I’m so proud of you for not hurting anyone today and asking for help instead.”

She was not elated by the treat, instead, she studied the ground and said seriously: “Thank you.  No one ever tells me when I do something well.”

In fact, she went on to thank me, twice more, that day alone.

Working at Still Waters Bible Camp made me feel more confident and capable as a leader.  I was able to work alongside people who respected me.  I memorized lots of Scripture, and got a better understanding of the Bible.  I didn’t start out a success by any means, but over time, I grew into someone who felt comfortable in a leadership position.  Also, for the first time in my life, in this one place, not a single person ever offered to pray for my physical healing.

It was such a relief, and I was happy to grow there, into a stronger person with a greater understanding of spiritual concepts, the Bible, and my own ability as an integral part of the body of Christ.


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Monday, August 1, 2016

Let's Talk About Faith Part 9: TheOnly

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission / Prayer

It was the end of 2004 when Liam finally convinced me to travel to an out-of-state conference that I’ll call TheOnly.  Liam had gone previous years and really wanted Tara and me to join him.  In fact, the previous winter, he had even offered to take over our commitments so that we might have the chance to go to this conference.

By now, the word “conference” alone conjured a bitter taste in my mouth and anxiety in my heart.  The first botched healing attempt I had ever received had been at a conference, and I was not excited to go.  Liam knew this, so he worked and worked to convince Tara and me this was an experience we needed to have.

Attending a national conference with thousands of young adults who spent all day for three days worshipping, praying and listening to Bible teaching did not sound like fun.  But my close friend, Sally, lived in the same city where the conference would be held, and I very much missed her.  I figured seeing her would be a good reason to go, even if that was the only redeeming factor.

Liam was thrilled.

I was thrilled because I had gotten to spend an eight-hour car ride with Sally (who had been in town for the holidays) and Tara, where we all screamed along to Kelly Clarkson songs until we were hoarse.

Once we arrived, though, I felt totally overwhelmed.  I don’t like crowds or a ton of noise, and there were over 10,000 people at this conference.  It was very easy to feel lost in the shuffle, which I did, instantly.  Tara and I had previously been to a regional TheOnly conference, when we were in college, but this was so different.


I had brought my wheelchair for the conference, because the venue was so big.  (Liam had assured me it was not a problem to transport it, and I was glad to have it along.)  That first evening, Sally, Tara and I lined up to enter the convention center.

We were immediately motioned aside by an usher:

“You need to clear the aisle.”

Surprised, we did as she asked.  All the while, she kept talking:

“There’s no place for that here,” she said brusquely, dismissively motioning to my chair (which I was obviously still occupying.)  “The only place for wheelchairs is under the bleachers.”

There are no words in the English language that adequately convey what her words did to me.  How they felt.  How deeply they wounded.  Nearly a dozen years later, the shock is still palpable.  The anger that masks the hurt underneath is still quick to rise.  To be so obviously dismissed, so clearly objectified and dehumanized at an event I had traveled eight hours and paid to attend made me feel like dirt on the bottom of her shoe.  I felt unworthy to go inside.  I felt like my disability meant I had to be hidden away, so I did not distract all the able-bodied people who traveled, who paid, who came to experience God here.  I felt humiliated and ashamed.

I felt forsaken.

Tara and I immediately turned around and went back to the main doors to seethe in anger.  Sally had disappeared inside, determined in her quest to find us seats, not letting the usher deter her.

“What.  The hell.  Was that?” Tara demanded.  “What was she even thinking?”

“Whatever!  I knew I shouldn’t have come!  This kind of stuff always happens!” I replied, trying desperately to distance myself from the pain.

“She said the only place for your chair was under the bleachers!”

“I know!  I hate this!  I hate her!”

“Like, ‘Bye, Tonia!  Have fun in the dark hole of a cave we stick you in while the rest of us worship God?’”

“Pretty much!  How am I supposed to see anything from under the bleachers?  What does she want me to do?  Sit under there alone while all you guys are literally on top of me, enjoying everything?”

“Oh, I’m not enjoying anything!” Tara reassured me.  “This whole thing sucks!  I want to leave!”

“I wish we could drive!  I don’t even want to stay here at all!  I just want to drive back right now!  I don’t care how long it takes!  Obviously, they don’t want me here!”

After a good ten minutes of ranting by the main doors, which were opening and closing to the late-December chill, I was freezing and reluctantly moved closer to where the horrible usher had singled me out, in an effort to get warm.

Just then, Sally reappeared.  “Hey, I found us seats!  Come on!  ...What’s wrong?” she said, registering the anger and hurt on my face.

“I’m not going in there.  Why would I?  So that woman can yell at me again?” I insisted.  “No.  There are no seats for me!  There’s no place for me here!  They said there aren’t seats!”

Sally was unused to my anger but did not shrink back.  “Yes, there are seats, and if you would have stayed around and not gotten so pissed off, I could have shown you that there were.”

We finally got inside and Tara and Sally sat down.  Seeing that I was still upset, Sally began talking, trying to combat the negativity I’d heard:

“It’s such a blessing that we found seats for all of us!  Tonia, you could totally add this to your list of ways God has been faithful to you this year!”  She moved behind me and began to rub my shoulders.  When that didn’t work, she came around in front of me and kept trying to encourage me.  “Just let it roll off your back.  We got seats.  Everything is okay.”

But everything wasn’t okay.  Us finding seats did not negate the tremendous pain I experienced at the usher’s words.  Though I was trying, I could not get it together.

“Are you okay?” Sally asked.

All I could do was shrug.  I hurt so bad inside.

Sally put an arm around me and that was all it took for me to break.  I felt like I had no business being there at all, according to those in charge.  And, for the most part, Liam and my other friends had hardly spoken a word to Tara or me since we arrived.  All that mattered was that we had come, that we were there, where they wanted us to be.

Nobody considered what might happen to us when we got there.  None of our friends were physically disabled.  They didn’t know the kinds of things I had to think about when I traveled, how overwhelming crowds could be, or how easily place-blindness could cause me to become lost.  I had no idea I was going to be treated like some dirty, broken object that no one wanted to even see there.

So, I cried.  And Sally held onto me, and did her best to reassure me that Jesus did want me to be there.  That He had prepared a place for me.  After five or ten minutes, I felt a little better, and Sally stood up to worship.  Seconds later, she turned around, and asked, “Did you want to stand up?”

I said yes, so we stood together.  She supported me, so I could stand and raise my hands, worshipping God through my pain.

[Image is: a cropped picture of me, on the last day of the conference, smiling a rare smile.]


I wish I could say it was different the rest of my time at TheOnly.  But over the three days I was there, three or four complete strangers approached me.  They either told me, straight out, that God was going to heal my legs or “I don’t know what’s wrong, but can I pray for your legs?”

I said no to the prayer, now confident that there was nothing wrong with me.  I took refuge in the prayer room while everyone else was in the convention center, wanting to be somewhere people would not bother me.  I had a journal with me at the time, and wrote:

“I don’t know why, but I just felt incredibly unsettled in [the convention center].  My gut [says] that it was [because of] the people who kept randomly touching me.  Because now I’m so tense and I couldn’t spend another minute in there...I don’t know what’s up with me.  Hopefully, I can relax and settle down.”

The single exception to all those people who could not resist putting their hands on me without consent, or asking to pray for my legs was, ironically, another stranger.  I was just 23 and he was older than that, perhaps, in his thirties.  It was the final day of the conference and I could not wait to get out of there.

“Excuse me….  Can I talk to you?” he asked, in the hallway outside the convention center.

“Sure,” I agreed.  I didn’t want to write off every single person as a rude jerk, especially if they weren’t.  So, I still had faith in humanity, but my guard was also firmly in place.

“I just wanted to tell you that God showed me...”

I braced myself.  I knew all about what God “showed” people about me.  My legs.  My chair.  I wanted to cut him off, with a brisk, “I’m not perfect, I know.  Can we just move on?” but I didn’t.  I held my tongue.

“...That you’re a really strong intercessor,” he finished.

Wait.  What?

“Really?” I said, surprised.

“I just see dynamite in a small package when I look at you.”

I was floored.  It was the first time in the five years that I had been attending church again that someone came up to me with a message from God that had nothing to do with my disability.

By the end of the conference, though, I still felt disillusioned and bitter.  There was no redeeming moment for me.  Even the comments from Dynamite Guy could not rectify or justify the things that I had experienced.


The Sunday after we returned home, the service at The Edge was informally dedicated to hearing about what God did at TheOnly, since a lot of people from our church had attended.  The acting pastor that day simply said if anyone had anything God was laying on their hearts to share to come and share it.

Sharing in front of the congregation about TheOnly was, frankly, the last thing I wanted to do.  However, in the culture of this church, it was believed that being uncomfortable was a good thing, and it meant that God was at work in your life.  So, I went up and sat in the long line of people at the front of the sanctuary and waited for the microphone to get to me.

“I...really don’t want to be up here.  I’m really shy.  I don’t like speaking in front of people...but God wants me to, so…  I have to ask for your forgiveness.  I have a lot of bitterness toward you.  I’ve stopped coming to church.  I’ve stopped worshipping the way I love to, going up front with some of you to sing and dance.  Instead, I sit. I worship in a pew, because you won’t notice me there.  Because if I stand and worship, I’m afraid that you will come up and want to heal me, or say I inspire you.  I’m really sorry for my attitude and I hope you will forgive me.  I hope you understand that I do appreciate the prayers you say for me, but my physicality is not all there is to me.”

(At the time, “physicality” was my code word for disability, due to the fact that I held so much shame around my CP.)

Immediately, the pastor took the microphone from me.  I was worried he was going to put me in my place.  (The only conversation he had ever had with Tara and me previously was to ask if Liam had given us a ride to church.  When we said yes, this pastor said, “That’s so nice.  I hope you said thank you.”)

“Tonia,” he said.  “On behalf of the congregation, I want to ask your forgiveness.  We’re so sorry.  Do you forgive us?”

“Of course,” I said, stunned, and never expecting such a turn of events.

After the service, a man I’ll call Steve (one of only a couple physically disabled church members) approached me:

“I wanted to thank you for speaking up," he said quietly.  "Thank you for telling them that, because the same thing has been happening to me, and for a lot longer.  Thank you for saying something, because nobody else knows how it feels, or how it impacts us.”


It seems particularly ludicrous today that I ever asked forgiveness of the people who wronged me.

The truth is, I  was functioning within a very specific system.  By asking their forgiveness, it meant that I had the floor.  It meant, for a few moments, they were willing to listen to what I had to say.  And I got to address something really important.

I don’t know that my former church would have ever apologized to me on their own.

I am by no means suggesting that apologizing to people who hurt you is the best course of action generally, and it absolutely is a personal choice.  There is no handbook that details how to cope when people in your religion discriminate against you and treat you poorly.

That Sunday morning did not fix everything, but never again did anyone at The Edge ask if they could pray for my legs.


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Friday, July 29, 2016

VIDEO: THANK YOU - 2 Years Blogging at Tonia Says!

I was pretty nervous making this video, you guys, but I wanted to let you know how much I appreciate you as readers and supporters of Tonia Says.  (A transcript of the video is available in the video description on YouTube if anyone needs it.)

Two years ago, I came across a post shared by a friend of mine on Facebook.  This post was from the point of view of a parent, giving other parents tips so that typical children would understand how to best interact with their disabled child.  Many of the tips were great, but a few really made me uneasy having been that disabled child, once upon a time.  So, I spoke to my friend privately and we had a great conversation about how she could best support disabled people in her family.

It was that conversation that led me to create Tonia Says.  I realize there are plenty of blog posts that pre-date July 29, 2014, but those were extras from another social media site that I didn't want to lose.  The actual original Tonia Says content started on that date.

I really want you all to know how much I appreciate and value you.  It means the world whether you have come here for community or to learn more.  I'm glad you're here.

Thank you so much for your support.

PS Check out K's post at Transcending CP, about why we want your questions.


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Monday, July 25, 2016

Let's Talk About Faith Part 8: Prayer

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission /

Ever since I had gone to the healing and deliverance conference in 2001, people really wanted to pray for my physical healing.

It was mentioned beforehand, but it seemed to reach new heights.  I got approached in the halls of my university by a fellow classmate who wanted to pray for my healing.  I allowed it, not yet comfortable with saying no.  When this didn’t work, the student didn’t make me feel guilty or wrong, and in fact, we formed a small friendship and I went to church with him a few times.

Once I left college, though, things picked up again.  Being home meant being back at The Edge.  I was dealing with many personal issues at the time, and I often didn’t want to leave the house to go to church.  It was fall, and that meant the coming of winter, and my ever-present anniversary reaction to nearly losing my sister.  At the time I wrote:

Now I need prayer for a whole other set of issues - ones that, most likely, won’t be touched on.”

There was one night where Liam would not take no for an answer, back in 2003.  He gently prodded and prodded until I agreed to go to a prayer and intercession meeting at The Edge.


The meeting itself was not particularly memorable for me, but it was the time afterward where we worshipped that stuck in my mind.  I had been seated at the end of a pew to one side of the sanctuary, and when the music started, I stood up. I’m short enough that had I remained seated, my view of the song lyrics would have been completely blocked by taller people.

I lost myself in singing and worshipping, feeling lighter and happier than I had in months when a voice interrupted me and someone grabbed my hand:

“I just wanted you to know that God told me that all your prayers are going to be answered.  You’re going to dance one day.”

She was happy.  Smiling.  Clearly well-meaning.  I had been raised to be polite.

“...Thank you…” I said hesitantly, just wanting her to go on her way.  I knew if God really was speaking to her, He would have likely shared with her the darkness that had existed over my life for the past months and years.  She might have said:

“All your prayers are going to be answered, and you won’t be afraid of losing those closest to you anymore.”

“All your prayers will be answered and you won’t feel horrible about yourself.”

“All your prayers will be answered because you will know you are enough just as you are.”

I tried to go back to worshipping, but I felt tense.  Watched.  And, frankly, more than a little offended.  It seemed that every time I attended an event like this, someone somewhere was convinced that all my hopes and dreams rode on being healed physically.

In spite of encountering people like this woman many times over the years, I had begun to nurture a small amount of respect for myself.  A small amount of love.  It was for all of me, CP included.  But it was hard to keep when so many who were older and held more authority said things that made me feel inferior.   So I moved.  I always felt more free in the open floor space at the front of the sanctuary, not confined to the area where pews blocked me.  So I walked up there, in an effort to hide in plain sight.  If she looked for me again in the pews, I wouldn’t be there.  I would be up front dancing.

I didn’t need that woman’s pity-prayers.  I could dance already, thanks very much.

It was what I was doing when I heard her voice again:

“Can you walk without your crutches?”

“No,” I said tersely, my body tense.

“Not at all?” she pressed, incredulous.  “Not even if I hold your hands?”


I was done being nice.  And I was so relieved when she walked away.

Again, I tried to refocus.

Before I knew it she was back a third time.  I think she could see I had lost patience with her because she hurried to say what she had to say:

“I just wanted to tell you that God loves you just the way you are and that you don’t have to do anything.”

I wanted to scream at her, “I KNOW THAT.  WHY DON’T YOU?”

In turned out that after her second time harassing me about how mobile I was without my mobility aids, she had spoken to Liam.  Told him that she had been trying to pray for me, I guess, and that I seemed not to want it.  Liam, having been at the healing conference two years previously, and having seen its disastrous impacts on me, cautioned her.  He told her (you guessed it) that God loved me the way I was and I didn’t have to do anything to earn it.

After that, I was done.  I was angry.  I was hurt.  All I wanted was to be able to do what everyone else there was freely doing: praying and worshipping God in peace.  I wanted to be left alone.  I wanted to be respected.  But instead, I felt like I could not show my face at church events because I would be bombarded by people who wanted to make a spectacle of me, heal me or tell me how much I “inspired” them.

There was usually an open door in the sanctuary that led outside.  Though it was dark out, and not the warmest, I pressed my back against the outside of the building and looked up at the sky just trying to breathe.  Just trying to be.  To rekindle that little bit of self-love I had managed to ignite in the face of so many voices telling me the opposite.


Six months later, I was at another church where Liam’s Christian band was leading worship.  A sign greeted me when I got there, informing me that the elevator was out of order.  There was someone already aware and working to fix the problem.  However, the sanctuary was downstairs.  I didn’t know how long the repairs would take.  And so, I turned to the flight of stairs.

I was descending the steps more slowly than usual, because they were unfamiliar and I didn’t want to lose my footing and fall.  A friend was at my side, which was a nice bit of reassurance.  It just so happened that halfway down, on the landing between the two flights of stairs, there was a Bible study going on.

I tried to proceed as quietly as possible, not talking or drawing any extra attention to myself.  Just as I got to the landing between the two flights of stairs, the conversation completely stopped.  The guy leading the Bible study stared hard at me and said, in an accusatory tone, “You know, there’s an elevator.”

“I know.  It’s out of order.”

“Well, someone’s fixing it.”

“I know that.”

“Well, why don’t you wait for him to fix it?”

“Because I can go down the stairs.”

I kept my voice quiet, and my tone respectful of this stranger.  He stared at me until I started down the second flight of stairs.  The silence was obvious behind me, but once I was out of sight, I heard him clearly, telling his group:

“I’m sorry about that.”

I tried to put the instance out of my mind and instead focused on the worship that was starting.  I knew right away that I wanted to stand up and worship.  As long as there was a chair behind me, I could do it with no problems.  As long as I stood still, I could be on my feet, with no support from anything.  It was a challenge, but I could do it, and I loved doing it.  Being able to both stand and raise my hands during worship felt so freeing.  So, that’s what I was doing, second row from the front, so there was a chair to grab if I needed to catch my balance.  I was right by the aisle, so I could easily come and go, without disrupting many people.

Then, the pastor started talking about healing.

I panicked, remembering the healing and deliverance conference three years ago.  I kept standing, thinking this was the way I would seem the most unobtrusive.  I hoped no one would see my crutches lying by my feet or even remember that I had them.  Despite all of this, I felt that my being there at all was drawing unwanted attention.

I had not moved.  I had not gone forward.  I had not raised a hand to signal anyone over to me, but just like that, two women had materialized.  A younger woman on one side of me, and an older one on the other side.

I was trapped.

The older woman started praying for me.

“It actually really bothers me when people come to pray for me and automatically pray for the legs.  There are other things going on in my life.  It’s frustrating that in church, I’m only something to fix.”  I told the younger woman sitting beside me.

“What else do you need prayer for?” she asked, seeming shocked.

But I held back.  She was a total stranger.  I had never met her before.  Not the time to admit to an array of mental health issues.

She led me through a rote prayer, asking me to repeat after her.  It all felt very weird.

At the same time, the older woman asked, “Can I pray for your legs?”

A man approached then, having overheard.  He whipped the chair in front of me out of the way, so that he would have better access to me and my legs.

I knew what was coming.  I knew they’d surround me.  People I didn’t know would touch my legs.  They’d pray and their prayers would get louder and louder, and then they’d give up.

And it would be on me.

[Image is: A black and white photo of my crutches on the ground and my legs and feet.  A hand is hovering above, ready to descend on my legs in prayer.  Photo credit: My sis.]

Before they could touch me, and for one of the first times in my life, I said, “No.  Not right now.”

They were totally shocked.

I picked up my crutches and walked away.

As this was an unfamiliar part of town, I didn’t feel comfortable standing outside, so I hid out in the bathroom for the rest of the message.  I knew the only reason I was not being accosted was that I locked myself in.  I felt angry and sad that again, I could not exist in a space that was supposed to feel safe.  I didn’t know why similar things just kept happening, no matter where I was.  It happened over and over, at The Edge and other churches.  People basically forcing themselves on me because they were so intent to see God heal me.

It felt beyond scary.  It made me panic.  Remove myself from situations.  Experiencing this one time would have been more than enough.  Would have been damaging enough.  I naively thought, though, if I didn’t “ask for it,” it would stop.  But it had been years, and it wasn’t stopping.

Outside the door, people I knew were getting prayer.  Friends were getting prayer.  And I wanted that for them.  I wanted to be free to go up to the front of the room and join in prayer for them.  Instead, I was paralyzed by anxiety.   I knew that by simply existing, I was an eyesore to be appraised and repaired.


I still remember flipping through the Bible on my own time and stumbling upon Isaiah 40:1.  The moment I first read the passage, I knew it was my calling.  People at The Edge called such things their “life verse.”

Mine read: Comfort, comfort my people, says your God.

When I first came to The Edge, Liam had called me a prayer warrior.  It looked to him like I was drawn to pray for many people.  In reality, though, I had been drawn by their distress.  I laid a hand on their backs not to fix what was wrong but to let them know someone was behind them.  Someone was with them.  Someone saw their tears.  Someone knew they were hurting.  Someone cared.  I wanted to comfort them in their time of need.  I was too familiar with how it felt to go through dark times essentially alone and I wanted to extend that support to others.

Perhaps, this is why my experience with receiving prayer has nearly always felt like the opposite of love.  My mind and my heart always equated prayer with acts of comfort and support.

And frankly, there was nothing comforting in being told that I was a distraction, or that I was broken.

I was meant to exist the way God made me.  Disability included.


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