Let’s Hear From Heidi

This week, our newspaper focused on disabilities, especially in regards to Andrews University, and the accommodations that are available. However, as I read through all the articles, as they guided us across campus from the perspective of someone on wheels, revealed future plans for increased accessibility accommodations on campus and beyond, and detailed the stories of those who have experienced campus with many varieties of disabilities – I couldn’t help but want to consider intersections of religion and disabilities in general. I wanted to explore a perspective that goes beyond Andrews, a perspective that dives deeply into one individual’s experience. 

So what did I do? I called my younger sister. Below is a piece of writing she created to express her thoughts on being a Disabled person in the Adventist church. Of course, she does not claim to speak for all disabled people or speak to every disabled experience. Her insights, complex, painful, and beautiful as they are, allow you to join her, beside her wheelchair, and catch a glimpse of her point of view.

Let’s hear from Heidi.

I don’t have the chance to be faceless. Instead, I am eternally gracious. 

I face ableism everywhere, every day. 

From having people snatch papers and pencils out of my hands to “just help you out” to trying to navigate stairs, curbs, broken elevators, missing ramps, too-tight aisles and doorways, and no wheelchair-friendly seating, I have to be constantly on alert. And the hardest part is that most of the time, people have no idea about the struggles I am experiencing. When a teacher says “hold up the amount of fingers…” or a pastor says “stand up if you…” I am reminded that my body is not included in their universe of possibilities. I have to remind myself that I do exist, and that that’s okay. 

The expectations put on me are exhausting. 

If someone asks me what it's like to live with a disability, I am expected to summarize my entire existence in one polite sentence. And if I don’t make it a cheery sentence, then they will assume that all disabled people are innately miserable. If I go to the University Health Center, I am expected to know how to find my own blood pressure (despite being a history major with no medical experience) simply because I don’t have the typical arm structure. 

When someone makes a comment about my body, whether calling it “inspiring” or “fascinating” or even “funny” I must react to the unasked-for judgment with grace and delicacy. 

I have to react that way because I am never anonymous. I have a physical disability, making me very recognizable. And because people fear those who look and act different from what they are used to, I have one chance to prove that I am worth their time. If I fail to smooth over a situation made awkward by someone making an uncalled-for comment on my appearance, then I will be labeled by them as “bitter” or “burdensome.” 

I know this because I have been told by so many people that, “despite the disability” I am a “ray of sunshine” and a “blessing.” Calling me “an inspiration,” a “ray of sunshine,” and a “blessing” suggests that I am unusual enough to comment on, because, according to their theory, those with disabilities are generally bitter, burdensome, and horrifying. But insulting my people is not complimenting me, it is displaying ignorance of the experiences of those who are different. 

It’s usually just little things, but I have to be gracious and react to complete ignorance in such a delicate way. I get exhausted when it’s the seventh time a day, and someone is expounding their thoughts about my body, and I can’t say anything to express my anger or exhaustion. Instead, I have to use my little energy to smooth over a situation that they made inappropriate, since if I do react angrily or frustrated, I’m just that “angry disabled girl,” who will never be forgotten or allowed to blend into the crowd. 

I’ve heard that it is built into us to judge people on first sight, and of course that makes sense; we need to be able to know if someone new will harm us. But the problem with this is that if we can’t judge people instantly, we get uncomfortable. And because disabled people often don’t fit into neat categories, there is a tension when they meet someone new. Disabled people have to make those they meet feel comfortable. The responsibility for explaining myself falls to me. I’m a woman, but I don’t have long hair. I’m an adult, but I’m short. I’m a human, but I don’t have all of my limbs. It can be exhausting and frustrating to explain myself. 

I want my wheelchair in Heaven. I want to sing with the angels, frolic with tame animals, and speak to Jesus. And I want to do all this from a powerchair that will never get stuck in ruts, that will never wear down, that will never run out of battery. 

For 20 years (my entire life), I have been the recipient of well-meaning Christian comments, assuring me that “in Heaven, you won’t have that wheelchair.” 

Is that a threat? 

“That wheelchair” is an extension of my body, an integral part of my freedom and dignity and existence. 

There is no separation between what I look like, the disability devices I use, and who I am. 

I am not waiting to be healed. I am whole. I am made in the image of God, not despite my limb difference, and not because of it. 

I am disabled. That does not make me less or more an example of God’s creativity. 

There is an extremely harmful narrative in the church, one that I have often had to navigate here at Southern, that disabled people are somehow closer to the divine, are some sort of martyrs for the kingdom, that disability is a great and usually unconquerable tragedy.

Disability is not a tragedy. My disability is not a tragedy. Your disability is not a tragedy. 

The only tragedy is refusal to welcome those with disabilities. The tragedy and martyrdom 

comes from the barriers those with disabilities face when trying to get into the church. 

And I quite literally mean “get in.” 

The most prevalent form of ableism that I have faced at churches, and especially here at Southern, has been literal physical barriers.

Wheelchairs can’t climb stairs. 

Wheelchairs can’t jump curbs. 

Wheelchairs can’t squeeze through too-tight doors, or down too-small aisles. 

Wheelchairs can’t disappear when there is no place in the sanctuary to put them. 

Wheelchairs can’t grow tabletops when there is no wheelchair desk. 

If my wheelchair is not welcome, then I am not welcome. And if I am not welcome, then I will not come. 

My accessible devices are not optional. They are intimately integrated with who I am, and if they cannot be included, then I cannot be included. 

And this is not reserved for wheelchairs. This is true of braille, of ASL translators, of sensory rooms, of numerous other accessibility accommodations.

If the Seventh-day Adventist Church, and the churches, schools, and buildings made by the church, and every event and every meeting that happens within those places, are not made accessible, then people of all disabilities will know that they are not welcome. 

I will know that I am not welcome. 

And we will not come. 

[A note on language: ‘Cripple’ is a term, once a derogatory slur, that has been reclaimed by the Disabled community. There is scholarship addressing this reclaiming. However, this word is never appropriate to use as a descriptor for someone without their express consent, and is also not appropriate to use as a term for a group of disabled people in a non-intentional way. Heidi uses this term in direct response to the word used in various Bible translations or other religious texts to describe those with disabilities.]

Let the Cripples Sit

Don’t raise me to my feet. Don’t command me in anyone’s name to roll up my mat and walk.

Cripples don’t want to be healed.

The wage gap does not make women long to be men. Racism does not cause people of color to wish to fade to white.

Cripples don’t want to be healed.

We don’t want to be baptized and sanctified. 

We want ramps and elevators.

Is that why churches won’t accessibilize? Because they expect every cripple who enters to rise up and walk?

Why do you look at me like I should look like you? Why is your goal to make my goal to be like you?

Every word I would use to describe myself was made by you. 

I am “missing” something, I am “deformed,” I have “lost” my limbs. 

The only things I have lost are those which you took from me: pride in who I am, opportunity in where I can go. 

The Good Lord understood. The Good Lord always asked, “My child, do you want to be made well?”

Well, He almost understood. He did not quite subscribe to the idea that I can be well without being whole, but I guess it could be embarrassing for Him to admit He included too much in the original version of Man. 

Too much leg, too long of arms, so much unnecessary tissue and muscle and skin. 

Embarrassing, as the Creator, to realize Your creation has evolved past your understanding, to realize all of Your healing power is completely unnecessary in the face of simple human existence.

And like Creator, created wishes to make, to fabricate a world where all look, walk, see the same. 

You want me to change: morph like a lizard, regrow limbs I never had and never wanted, shift my body until it matches your definition of complete. 

But I refuse. 

I am beautifully refined, a body edited of all unnecessary weight, a statue shaved smooth of imperfection, a poem written to the perfect length.

I am glorious as I am, limbless and lovely, disabled and dazzling.

I’ve witnessed you trying to figure me out. 

I've watched you take me in, and I’m tired of the confusion that comes back out.

I’m sick of laughing off your awkward comments, sick of being treated like a textbook illustration, like some exemplary example of what “the other” looks like.

So here’s what you do when you see me, here’s how you act when you see my people:

Do not cry

Do not pray

And don’t command us to walk

Instead

Smile

Breathe

Build ramps, fix elevators, open doors,

Prepare the way for us! Smooth out the paths!

Let the cripples sit and hinder us not

For ours is the kingdom of heaven