Reflections and… Prayers?

If you were reading my Instagram stories on this past weekend, you probably noticed that I mentioned the guy who came to my door and decided to pray to cure my disabilities. That was… indeed a thing.

I had an encounter with a stranger who came to my door to invite me to their church – and decided to ask very invasive questions after realizing that I was disabled.

I almost laughed when he bluntly asked me “so what’s going on with your body then?” – as if I was sitting in my primary doctor’s office.

But the most stressful part came later, as he tried to persuade me that I needed to be cured. if I wanted to be better at helping others.

And he insisted this as he prayed loudly at my door, wandering eyes open – as if he was eagerly awaiting another neighbor to peek outside to appreciate his performance.

And a performance, it certainly was.

Unfortunately, that wasn’t my first experience of a complete stranger deciding that they could “cure” my disabilities through prayer, and I’m sure it won’t be the last. Meanwhile, I’m usually contemplating my own silent plea for quiet when this happens.

From airports and the grocery stores to even the infusion centers and parking lots – this has been a thing for a long time.

Even before I used mobility aids or AAC, this was a common cultural experience. I have a lot of religious trauma, with this only a small facet.

I want to be clear: this post is not about religion or beliefs about cures. I don’t have the energy for that, and my caregiver has a bit too much fun when they have to help moderate comments.

The thing that makes me the most uncomfortable and unsafe is when they put their hands on you – especially when you’ve already politely said no or expressed that you’re fine.

It didn’t happen this time, but the man did show up at my house without a mask and kept moving closer to inside – a boundary I did not want crossed. There’s something extra unsettling about it happening at your own home.

A lot of people messaged me after I posted about the recent incident in my stories – talking about how they’ve experienced the same thing.

My friends, think about that for a moment. Think about how scary that is.

I always struggled to understand how the loud, public show could be reconciled with the passages I had read as a child – where those with earnest thoughts were instructed to pour out their hearts within quiet privacy.

And that to me, is really what becomes distressing

It makes me feel as if my disability curates an easy target, the perfect opportunity for someone else’s ‘wholesome’ sermon next week.

They go about their day with a heightened sense of pride and the ego boost.

Meanwhile, I hide under my weighted blanket – feeling like nothing more than a tool, an object used to sell the image of someone else’s moral high ground.

The unfortunate truth of the matter is that my disabilities do make me an easy target for this.

Why?

Once again, disability is seen as a tragedy. To many people, they see disability as a personal fault, a fluke, or a rare occurrence. We have such a heightened focus on independence and productivity that the idea of disability sounds like a fate worse than death.

After all, like I’ve been asked before:

“Why would you want to be a burden?”

Within that question lies the heart of the true problem.

Having a disability, needing supports, and asking for help these things do not make you a burden.

When I presented at a conference back in 2018, this was something I emphasized heavily:

Humans are not independent.

We are interdependent.

Whether you rely on someone else on a personal level or on a larger scale, we all are helped or influenced by others in some way.

Being disabled doesn’t make you a bad person, it doesn’t make you worthless, and it certainly doesn’t mean that you have to be cured in order to be meaningful to society.

You see, this isn’t a post about cures. This isn’t about what-ifs or alternate endings.

I deal in what I’m given, a day at a time. It’s how I’ve survived this long.

From a toddler as a ward of the court to the traumatized adult I am today, adversity is encoded in my personality – and I simply breathe in resiliency and move along. What other choice is there for me?

I live in a world of accepting a day at a time, where looking back is not the option I give myself.

I don’t pretend to know the future – and I refuse to play the role of a higher power, foolishly imagining that I could foresee all the winding, branched out timelines that lie before me.

Because when you attempt such a thing, there will always be one to prove you wrong.

Life is meant to be lived; I refuse to spend my time mourning what could be.
Why should I miss what is right in front me?

I found it intriguing how the man kept pushing that I should want his prayer for a cure, and his reaction when I pushed back with the notion that perhaps my disability gives me a unique perspective to help others.

“But if you were cured, you could be more efficient and help more people!”

I am not a machine. My worth does not hinge on my efficiency, nor does anyone else’s.

The more I think about it, the more I slightly understand why he was so taken aback by my assertion that I was quite content.

It’s something I’ve noticed a lot, especially with people who like to either dance around the word “disability” or want to avoid the mention of such things altogether.

It’s almost as if people are afraid of it – especially physical disabilities/illnesses. I sometimes wonder if it’s because people don’t want the reminder of mortality.
It’s the notion that life is really so fragile that your whole life’s trajectory can change with one accident, an illness, one traumatic event – and if you’re alive long enough, you’ll be in this category right along with us regardless.

My life does not fit typical expectations, and that’s okay.

Is being disabled difficult? Of course.

I’ve shared vulnerable moments on here and on Instagram plenty about meltdowns, chronic illness complications, and more.

Sometimes I do feel broken down by it, and I’ll even freely admit – sometimes I miss the things I could do before my chronic illnesses got worse and my last two TBIs.

As much as I love AAC, that voice doesn’t quite capture the emotion I want sometimes.

I went from being on a planned-out path to a PhD (with accommodations and part time caregivers to help me with some things, because autism ) to needing essentially full-time support and having to fight hard to keep out of a group home.

That said, my disabilities have also shaped my life in such a way that I don’t know who I would be without those formative experiences.

Would I have ever met my fiancé if I wasn’t autistic? I doubt it, because it was our shared special interest of Doctor Who that brought us together. The same goes for my online family – we all found each other there.

I wouldn’t have met my best friend if it wasn’t for POTS, and the cane they complimented as I tried to stay upright.

The conferences I’ve presented at, the panels I’ve been on, the community support groups, and even the student organization I founded – my disabilities gave me the confidence and empathy I needed to understand others.

Does that sound like something I need a stranger’s cure for?

I want to remind people that this post isn’t about whether or not a disability should be cured (as an autistic person, let’s keep my blood pressure lowered and just not go there).

My point is about the innate worth of a life – and once again, the right to exist somewhere without fear of being harassed or touched without consent.

A reminder that my disabled BIPOC friends have this issue at an intersection – and not only do they have to deal with the dehumanization aspect, they have to deal with possible racial violence too.

So here I am, a broken record on this website as always – reminding everyone that disabled people are not burdens and that your worth is not measured by your “efficiency,” as my surprise visitor apparently put it.

You are loved.

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