In celebration of Disability Pride Month, we are honored to share a story from Amber Bryant. Amber shares about her connection with God, the importance of being seen, and her experiences as a person with a disability. She highlights the value in finding the right support, self-advocacy, and the role her relationship with God has inspired and comforted her.
As we take time to recognize and celebrate Disability Pride Month, we also want to affirm our commitment to creating and supporting accessible spaces and advocating for the necessary social changes to support all individuals. The CDC defines disability this way: “Disability is not a personal deficit or shortcoming, but rather a social responsibility that occurs when a person’s functional needs are not met in their physical or social environment.” This social model of disability emphasizes the need for social change to accommodate people with disabilities, viewing disability as a mismatch between a person and their environment.
Our hope is that all community leaders in our communities continue to dedicate themselves to creating a world that is accessible to all.
“Never Alone: The God Who Sees” by Amber Bryant
The Spring of Youth
I used to love the Spring of my youth. I loved its power to thaw Winter’s dreary chill with its sunny herald of bright flowers, leaf-laden trees, and new life. I used to laugh alongside the rest of creation in wonder at the world as we rediscovered the joy of being outside. My days were spent against a bright blue sky, sometimes gray clouds and sun shower rainbows giving surprise performances in the afternoon sky. I felt embraced and seen by the world around me. These days, however, are markedly different from before.
A Turning Point
The last Spring of my youth quickly came and went in 2005. I was much too busy taking standardized tests and preparing for my impending college experience to enjoy rainstorms out on the porch or catch rainbows that came out at noon after the clouds rolled away. I had many things to do to prepare for my next phase of life. It was a time full of excitement and anticipation. It was the end of old things and the beginning of new things.
![Profile picture of Amber Bryant.](https://i0.wp.com/folxwithfaith.org/wp-content/uploads/2024/07/0_34_317_362_Amber-photo.png?resize=317%2C362&ssl=1)
The Onset of Illness
In the Autumn of that same year, I began to have random bouts of fatigue and widespread pain. Everyone around me had a solution.
“Drink more water”
“Exercise more”
“Push past it.”
“Think about happier things.”
Doctors sent me away to buy bottles of Tylenol insisting that these were just the temporary results of acute stress. The underlying message I received was that this debilitating condition was ultimately my fault, and I was the one who had to fix it. There was a deep sense of loss and shame in the wake of that first attempt to advocate for myself. Those around me couldn’t understand what it felt to have your body suddenly be at odds with itself. I tried to explain to those who would listen, but that number steadily shrank. I’m sure they wondered why I wasn’t taking their advice to fix myself and insisted on making a fuss by complaining about my experience. It would take another 2 years of listening to well-intentioned, ill-informed advice before I found a doctor who intently listened. Two months later, it was determined that I had a very real and permanent autoimmune disease. Nothing would ever be the way it used to be. The life I once knew would never find its way back to me. Instead, I was standing at the edge of my new normal.
Navigating the Present
The Springs of my present bring about the duality of hope and the dread of pain. When the skies are clear, I smile looking outside my window. When haze and gray take over the atmosphere, I find myself wrapped in a fetal position, desperate to find comfort beneath the weight of my comforter. It is the only way I can find reprieve from the intense pain.
On these overcast days when clouds fill the sky, I tend to wake and involuntarily take a deep breath to brace myself. I am well acquainted with the deep ache that will accompany my first movement and then remain with me throughout the day. By the time I make my way to the kitchen, the ache in my body will skyrocket to less than manageable numbers. I have to keep pushing until I have at least found food and water. After that, I brace myself for the awkwardness of canceling plans. Most people, though they don’t quite understand, try to be compassionate anyway. I hope and pray they won’t see me as flakey and will take the chance to invite me out again next time. However, like the pain in my body that siphons my capacity to be present, I have no control over anyone’s response. I have learned to embrace the vulnerability of hoping that the other person likes me enough to choose not to see me as a flakey person. I also hope they can see the bravery beneath my agreement to venture out into a world that does not see or make room for me to spend time with them.
After those hurdles, I brace myself for the day ahead. Thankfully, I have the privilege of working from home these days. However, the physical fatigue and foggy mind are relentless. I struggle to maintain awareness and be present on gray days. The workday becomes a fight between my desire to be fully present and my physical capacity to do so. My desire doesn’t always win, so at the end of the day, I find myself sorting through and processing all of the emotions I did not have time to fully feel during the day. I cry at the anger of a body that, in some ways, feels like a betrayal, but is still all at once desperate for and worthy of love. I lament the loneliness that being invisible brings, aware that the suffering that rings so loudly in my ears exists on a frequency that is often silent to others. I loosen my jaw and remind myself to breathe deeply as I name my anger as I remember that being unseen is not my choice, but the consequence of a world around me that is too uncomfortable with my divergence from the norm to make room for me as I am. Instead, it demands I obscure my frame beneath a mask shaped like “everyone else” and adopt a language that compliments. As I close my eyes to the day, I think of others like me. I think of our stories, and I mull over the name ‘El-Roi.’
El-Roi: The God Who Sees
‘El-Roi’ – “The God who sees me.” It is the name a pregnant Hagar gave the God she met by a spring of water in the wilderness. God had seen her and she had seen God and was still alive to tell the story. This was not common. In fact, for someone of Hagar’s status, one set very low in the imposed social hierarchy, I’m sure she expected to drop dead after the encounter. After all, she was just a servant girl with no rights, no status, and no say over her future or her body. This harsh reality was accentuated by the child growing in her womb. Without being consulted, she was made to be a surrogate for the baby that Abraham’s wife, Sarah, was unable to conceive. Both her womb and her child belonged to and were used in service of another. However, once the pregnancy was confirmed, Hagar became less submissive and Sarah became more frustrated. After enduring as much abuse as she could handle, Hagar ran away to the wilderness, wandering aimlessly. It was in this context that she met ‘El-Roi.’
His first words were to ask her where she was going. To many, this may seem like a small, inconsequential thing. However, for someone who is regularly told what to do and never consulted on what they want to do, this question unveils some deep wounds and truths. It not only recognizes her innate humanity and personal agency, but it makes room for her to express both by taking up space with her own voice. She tells God she is running away. God urges her to return and then makes a promise exclusively to her and her child. When Hagar is driven to the wilderness again, this time with her young son in tow, fully prepared to die, the God she saw and who saw her returns.
The Promise Fulfilled
She asks God not to let her witness her child’s death. Instead, God stays true to the original promise God gave Hagar. God had seen her suffering and would give her a future surrounded by a community of her family. This family would be born of a son who knew his mother’s story intimately and would have an innate sense of fight within him. This sense of fight would make him a force to be reckoned with and would buck up against rather than submit to the rule of those who had once ignored and trampled upon his mother’s humanity. Hagar and her story would no longer exist in obscurity. It would be brought out into the open for all to see. She would not remain invisible.
Comfort in Being Seen
I doubt she had ever truly been invisible. Not to the God who sees. I imagine that God, as They so often do when working with flawed humans, knew of the potential harm that could befall Hagar in Sarah and Abraham’s attempt to help God keep God’s promise. I imagine that caused God to especially keep a close eye on Hagar and her experiences. So much so that the details would be retold for many generations. I also imagine that the promise of her son, Ishmael, having a stubborn sense of fight within himself was a promise specially curated for her broken heart. She had the assurance that her son would not be subject to the kinds of injustice she had suffered. He would not relinquish his agency or humanity to the comfort or rule of others. Instead, he would stand up and fight and establish space for himself.
I find myself also taking comfort in this promise. I remember sitting down in the room with the doctor who discovered my diagnosis. Her gentle cadence put me at ease. I had pushed past the shame I’d been carrying as she asked her questions. She prodded with curiosity instead of assumption until she got a clear picture of the full story. Ultimately, she sent me for additional blood work and treatment with specialists. When my diagnosis came, she explained the symptoms, struggles, and possible methods of treatment. She then asked me what I wanted to do while assuring me that she would support any decision I made. She let me know she was seeing me, and that I was not invisible.
Hope for the Future
It is Hagar’s encounter with The God who sees that reminds me to continue when it becomes difficult. Just like Hagar was never truly invisible, neither am I. While some seek to ignore my plight, there is One who actively seeks to tune in to my frequency. I choose to derive my sense of worth and my unyielding hope from this place. The world around me may not make room for me and my needs, but that does not mean that I am left unseen. I do not have a son or family with intimate knowledge of my story. However, I know that even though the details may differ, I am not alone in my experience of Spring. I am not alone when I am looking for a place to fit from the outside. There is one who sees me and allows me to see them. One who, if I am willing, will also open my eyes to see and make room for others.
Folx with Faith
At Folx with Faith, we are dedicated to creating and supporting communities where everyone is seen, valued, and loved. Amber’s story is a powerful reminder of the importance of being acknowledged and supported, and it highlights the critical role that inclusive, accessible spaces play in our lives.
We invite you to join our Folx with Faith communities, where we prioritize accessibility and inclusivity for all individuals. Whether you are looking for support, connection, or a place to share your own story, our communities are here for you.
If you’re interested in learning more about starting a local chapter or want to get involved, we encourage you to sign up. Together, we can be the forerunners in creating necessary social changes to ensure that every individual’s needs are met and celebrated.
Resources for Never Alone: The God Who Sees
- About the Author
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Amber Bryant works full-time as a software help desk employee and is also the Data and Content Coordinator for The Dignity Effect, LLC. This lover of music, and oldest sibling of 3 is also the founder of “Family Brunch.” Family Brunch is a non profit organization that seeks to build connections between people around the world and to further conversations regarding life, faith, humanity, and justice where every voice has room to speak. In her free time, Amber can be found leading her local church book study, writing for her personal Substack, or binge watching yet another new K-Drama.
Where can you reach Amber Bryant?
IG: Am_Bryant
Substack: @ambryant