Posted in musings

response to a sermon on worship

I can definitely be an over-sensitive perfectionist, but I don’t think it is irrational to be hurt by a sermon about the role of the body and communication in worship that doesn’t even mention disability. There wasn’t anything technically incorrect with what was preached, but everything had to be translated, contextualized, or rephrased if it were to be relevant to the life of someone with a physical disability or social communication disorder. And it just leaves me feeling so unwanted in the church – feeling that people like me can never fully participate in the body of Christ because of issues with how our own bodies and brains both respond to our environments and express our emotions.

It is important to give the best of ourselves to God: all of our mind, heart, and body, as the gospels say. For the Israelites of Malachi’s time (the source text for the sermon was Malachi 1), it was important to offer the sacrifices according to the law instead of just giving Him their leftover and damaged animals, and it is good and right for us to remember that principle and follow God with singleness of mind and whole-hearted devotion. Translating that to the lived reality of worship music during Sunday service is not so clear-cut, however. I remember when I was in high school and thought I knew what was best for worship music: what types of music would best glorify God and lead people to honor and meditate on Him – and I wrote about it in a public forum, and I received the most graciously pointed rebuke I have ever been given for my arrogance. Fifteen years later, I am more aware of the diversity of the body of Christ: how each of us responds in a different way to different words and styles of music; how each of us can offer worship in a unique way; and how when we worship together we all must bend and accommodate others, both sharing from and holding back on our individuality so that we can worship as a unified body.

It is for this reason that I participate in the musical worship at our church, although it is difficult for me in multiple ways. I wear ear plugs so I can tolerate the volume; I sit on the end of a row so I won’t feel overwhelmed by the people around me; and when it’s really bad, I try to sit in a small area just off the sanctuary instead of going outside so that I can still be part of the service. I sing even the songs that I don’t particularly like (although I will skip lines that I feel are theologically inaccurate…), and when I can’t sing I try to meditate on the message of the songs. I don’t expect the worship service to be tailored to my preferences and needs, and I often find great beauty and encouragement through music I would never have sought out on my own.

When a pastor tries to tell his congregants how to worship, however, with the fear hanging over their heads that if they don’t get this right they will be guilty of offering their secondhand, broken leftovers instead of a worthy sacrifice, it is reminiscent of the same arrogance I had at sixteen. Jesus told the woman at the well that the time was coming in which God’s people would worship Him in spirit and in truth – so the way we move our bodies during a praise song doesn’t matter if we are centered on God and praising Him. Additionally, to imply that there are right and wrong ways to physically conduct oneself during musical worship – and then not to say what those ways are because everyone should know – is to pave a straight and smooth path to anxiety, shame, and a sense of inadequacy for anyone in the congregation who struggles with reading social norms and expressing feelings in an “acceptable” way.

I am positive that if autistic and intellectually disabled adults were moving and responding in worship in an expressive way that felt authentic to them, someone in the church would call it disruptive and try to make them conform to a more “normal” behavioral pattern. This same attitude is just as toxic in reverse, when it lands on people who tend to not show any emotional expression with their bodies. I prefer not to move in large ways, not to lift my hands and be exposed and vulnerable with a crowd of strangers around me, not to share my emotions with people I do not know well. God knows what is in my heart, and it is that which I offer to Him – He will not judge me for not moving my body in a way that aligns with neurotypical standards for deep emotional responses. He will not make me feel ashamed because my anxiety and sensory overload cause me to respond in a less than perfect way.

If the church wants to be truly inclusive, truly open and welcoming to those of us who feel and respond and behave differently, then the least it can do is acknowledge our presence. Acknowledge that some people cannot physically respond with lifting of hands or kneeling because of chronic pain or age or muscular dystrophy or any other disability. Acknowledge that for some people a verbal response is the most genuine and whole-hearted response they can offer in worship, because their authentic physical responses are buried under years of practice at masking to fit in with a neurotypical society. Stress the importance of the heart centered on God, and acknowledge the reality that the outward response can look radically different because disability and neurodivergence are real things that affect real people present in the body of Christ.

Posted in family life, musings

the value of a diagnosis

As we proceed with Rondel’s diagnosis (since the school district is unable to provide an actual medical diagnosis in their evaluations), we’re using an innovative diagnostic app developed by a local children’s hospital, which involves capturing multiple videos of Rondel’s actions and interactions in specific situations. I like the concept a lot, as it lets the doctors see into Rondel’s everyday life and observe him unnoticed for far longer than would be possible in an office setting! However, as I’m going through the videos to trim and upload them, I keep wondering if the specialists will see the differences that we believe are present – or if they will tell us that his struggles are due to something like poor parenting. Maybe if I were stricter, or reinforced acceptable behaviors more consistently, or provided him with a more stable routine, or cleaned up our diet, or or or or…

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…then maybe he would be fine, maybe he would be normal, maybe he would fit in with all the other kids instead of sticking out uncomfortably.

He just isn’t so significantly different that it’s obviously a medical problem to a layperson. His differences are hidden, partially masked, behind his gregariousness and intelligence and creativity, until he’s used up all his energy on coping and he falls apart. So when people see him melting down or acting out, it’s easy for them to assume he is doing so willfully, or to think that he is simply being “spoiled” and “self-centered.” Even I, who see him every day, wonder sometimes if the difference is truly there, all the way down, no matter what, or if I could find some parenting technique that would work better for him and “catch him up” to his peers.

But I wonder that about myself also. Do I fail to maintain relationships or engage in neighborhood community-building because I am selfish, lazy, and don’t care about other people? If I were a better Christian, could I overcome my introversion? Many people do, after all, and are able to make time to recharge themselves. So am I guilty of using my social anxiety as an excuse to cover up for my vices or inadequacies?

Similarly, before I was diagnosed with depression (and honestly sometimes still), I would tell myself that if I just tried harder – if I prayed more, exercised more, ate better, spent more time in self-care, spent more time with close friends, practiced the right mental exercises, etc – I could get through the negative feelings and be fine. Getting the diagnosis was one of the best days of my life, because of what it meant to me: that I wasn’t an awful person taking advantage of the people around me, just a sick person who was trying as hard as possible to find joy and light but needed some extra help.

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And my hope is that a diagnosis will be a similar gift to Rondel: a confirmation that his differences are real, and valid, and significant; a reminder that some things will be harder and it will be ok to seek and use help and support; and a shield against the barbs of guilt and shame that always accompany deviations from social and cultural norms. The alternative – refusing to acknowledge and name the neurological differences that give rise to his behavioral differences – is only a recipe for disaster as he grows older and begins to notice his differences without a framework for comprehending and addressing them. How much better to provide him with a framework of informed understanding, acceptance, support, and unconditional love!