Unexpected Changes
Let’s leave the 60s behind and fast forward to the year 2000, the start of a new century. So much had taken place in our family and in both of our lives in the decades leading up to this story. Those stories are waiting to be told.
Here is a quick summary of those years that helps set up the context for the church I’m featuring in this second part of this blog series, A Tale of Two Churches. Each reference could be fleshed out in a blog post of its own, but for now, this quick overview will have to do.
Our parent’s relationship deteriorated. Dad was diagnosed with a manic-depressive disorder in the early 70s.
In 1979, after 28 years in her family home on the farm, Vickie was placed in Bethphage Mission, a facility for disabled individuals, in a small town 70 miles east of where we grew up. A medical diagnosis of Mental Retardation was necessary to qualify for government funding and placement at the center. 1
In the span of the next ten years both parents would die. Dad, in 1983 at the age of 56, three weeks after being diagnosed with pancreatic cancer, and Mom in 1989, a month shy of her fifty-seventh birthday. Like dad, she died only three weeks after being diagnosed with lung cancer.
Becoming Guardian
I was busy with my own life and paid little attention to the events that transpired in Vickie’s relationship with our parents. I just assumed they continued to function in their parental roles – as mother and father to Vickie. But that was not the case.
Even when both parents were living, their function as father and mother discontinued when Vickie became a legal adult. Since she had been declared developmentally disabled and physically incapacitated she was essentially a ward of the state of Nebraska. Lacking the skills to represent her own self, the state required a guardian to advocate for her well-being since she was incapable of doing so for herself. Dad filled this role until his death. Then the State appointed our mother to be her guardian.
Obvious to everyone in the know of these sorts of things – but quite a surprise to us at the time – a guardian would be required. We were in for a steep learning curve in all things related to disabilities and the state and federal regulations!
At the time of Mom’s death I was living in Colorado. Our only brother was married and living in Florida. Our second to youngest sister was married and living in our home town, and our youngest sister, also married, had temporarily moved back from Michigan to live with mom. Vickie, as I mentioned above, had been living at Bethphage for the past ten years.
After mom’s funeral we all met with the attorney to read Mom’s will. We gathered around an oblong, wooden table at the attorney’s office on Main Street in Sutton. We were far too young for this and were in various stages of disbelief and grief. Yet, here we sat nonetheless.
There was a silence in the room and solemn countenances upon our faces when the attorney began to read through the will. When he turned our attention to the matter of Vickie’s guardianship, all faces turned towards me.
“You are the one who should do this,” my siblings suggested in near unison.
My heart was pumping in my chest! I wanted to protest, “Why am I the one?” Instead, I held my tongue.
With Vickie sitting in her chair at the table with the rest of us, it was preposterous to think we could discuss the matter candidly. It would be insensitive and cold-hearted to talk about how unfair life is. Besides, it would crush her spirit to hear me rattle off the many reasons why I didn’t desire this responsibility.
I was being cornered into a role I had fled years before. I could not see any way out.
My life was full – overflowing with meaning and purpose! I was living my dream – married, homeschooling our four children – while juggling ministry responsibilities as a pastor’s wife at a church in Denver.
In my wildest dreams I never once featured Vickie into my future. In fact, I had finally recovered from recurring nightmares that had haunted me for years after leaving home.
Nonetheless, the words stumbled out of my mouth, “I will do it. I’ll be her guardian!”
Once I was appointed by the State of Nebraska and was in charge, so to speak, I determined to do everything in my power – so that she, like the rest of us – could pursue her own dreams.
Opening Doors for the Disabled
I had only snippets of details from her years in institutional care in Axtell. As guardian that would all change. I volunteered for a role that demanded more from me than I realized at the time. Confident – over-confident, perhaps – I had the skills to remedy the past and provide her with the blessings she deserved, I went immediately to work advocating for changes in Vickie’s life.
The first item on my agenda was to persuade the powers that be to help me find funds to purchase an electric wheelchair.
Months before mom had died I watched a young man use one at a theatre in Denver. After a short visit with him and the friend accompanying him, I knew immediately that this would significantly improve Vickie’s life for the good.
It took some time to convince Vickie how important this motorized contraption would be. That’s a story for another time. But, after that trial-run in a powered-wheelchair she quickly changed her mind. She was a natural at maneuvering her car – as she dubbed it. I could tell she was delighted in this first taste of independence, and was ready for more.
After nearly 38 years of confinement in a manual wheelchair – her own arms unable to move the chair one iota – she could now move at will from one place to another! Whenever she wanted ! Without relying upon or waiting for another to assist her. This was monumental. Changes were in the air! Doors were about to be opened!
The 90s were good to those within the disabled community. In July of 1990, President Bush signed the Americans with Disabilities Act (ADA) which guaranteed the disabled community “unrestricted access to public buildings, equal opportunity in employment, equal access to government services and employment opportunities.” 2
Most remarkable was the Capital Crawl of 1990 when “60 activists with disabilities climbed out of their wheelchairs and [crawled] up the 83 steps of the Capitol to protest to their rights not being protected.”
Although the ADA was a pivotal moment for the disabled community, it is vital to remember the many who worked tirelessly before this moment. It has taken years and years to advocate for changes in government policies, institutional and community programs, and to explore novel ideas of how to improve care for the disabled. This paved the way for the ADA.
It has also taken years and years to change the language and vocabulary in order to speak respectfully about and maintain the dignity of those in this subcategory in society.
In 1970 the Development Disability Services and Facilities Construction Act replaced the term mental retardation with developmental disabilities (still problematic in my mind). I have found the terminology used prior to this to be quite disturbing when reading through the records, archives, and Christian books that discuss disabilities.
Changing the language is at least a start, but let’s not be fooled into thinking that changing the words we use is enough to change attitudes towards those we determine to be different than us. It’s not the words we use, but the actions, that reveal our attitudes.
A Place to Call Home
Vickie’s case manager called one afternoon to suggest I consider moving her into an apartment in Minden to live with another disabled woman. Bethphage Mission was expanding their program to include independent-living for several of their residents.
The offer sounded to good to be true. Vickie could work during the day at the Bethphage Workshop in town. She would be free to spend her evenings and weekends as she wished. Living in an apartment would allow the two women to live a more independent life.
Moving into a place of her own was one more step in realizing her own potential.
We picked out wallpaper with matching bedspread and curtains for her bedroom. Her dishes filled the kitchen cupboards. We purchased a TV, a speaker-telephone, and a special recliner just for her to give this new space just what it needed to communicate home!
She shopped at the local grocer – with the help of an aid – and chose what she wanted for breakfast, lunch, and dinner.
Weekends were spent tootling around town – a red flag waving high on the back of her car – to alert drivers she was out and about and out on her own. She enjoyed taking the car to the library to pick up a video or two. Like all new drivers, though, we often reminded her to set her speed somewhere between the rabbit and the snail’s pace on the device.
Doors were literally opening for Vickie.
For years, many from the disabled community worked tirelessly for these changes. Regulations to remove all barriers enabled people with disabilities to pursue independent lifestyles just as abled people do.
Zion Chapel
While researching through the archives of Vickie’s history, I came across the photo of Zion Chapel in Minden.
Decades before the federal government enacted the ADA disability regulations, this lone church – Zion Chapel – stood tall in the middle of nowhere, surrounded by corn and wheat fields. The founders of Bethphage Mission anticipated not just the physical needs of their guests, but recognized the significance of their spiritual needs.
Zion Chapel stands as a tribute to the faithful Lutherans who were many years ahead of their time! With no barriers on the premises, everyone who desired to worship could freely join the congregation in the sanctuary.
There would be no worshipping alone in a basement ever again! I’ve often wondered why it took a mandate from the government before other churches would follow suit.
Welcoming the Least of These
One morning in September of 2000, the phone rang.
We had moved to central Missouri a year after mom died. I’d been serving as guardian for eleven years now. So when the Caller ID revealed a phone number from Nebraska, the state where Vickie lived, I was naturally apprehensive.
The male voice on the other end was tentative.
“Hello, this is Pastor Jerry, from the Evangelical Free Church in Minden.”
He was choosing his words carefully, explaining he needed to discuss a situation about Vickie that had transpired a few days earlier during the worship service on Sunday.
I was all ears! But I was more than worried. I was used to calls from a case worker or one of the aides, but this was unusual. Whatever could have happened that prompted a call from the pastor?
For the first time in her life Vickie was free to choose where to spend her Sundays. I was delighted she chose to attend church. She could just as easily have chosen to sleep-in on Sundays. Her faith, and relationship with God was important to her then, and still is. She chose to attend the Evangelical Free Church in Minden, pictured above.
If you’ll notice in the photo above, there happen to be about 8-10 steps into this church building. Prior to the Americans for Disability Act of 1990 many buildings were inaccessible. This church building was no exception. I wondered how Vickie managed.
In preparation for this post the two of us used FB portal to scroll through the photos of the churches she attended before moving to Fairview Manor. I knew the story, but hoped the photos would generate more of her memories.
When this photo popped up, I teased, “Did you have to sit in the basement in this church?”
“No,” she laughed, shaking her head!
“Well, then, how did you get into the building?”
“Nice men!” She referred to the deacons who helped her each Sunday morning.
“Carried me up [the] stairs!” I clearly detected an emphasis on her own self. She knew these men volunteered to be there for her! That meant a lot!
The care-provider, who had spent the night at her place, helped her get ready. Vickie had a fashion sense and enjoyed getting all dressed up, especially for church. She wore outfits she chose for herself – and always with matching earrings.
I happily accommodated her wishes and encouraged her sense of style whenever she called announcing, “Me need more skirts!” “Me need more tops!” “Me need more earrings!”
Once ready, Vickie would exit her own apartment, drive down the sidewalk to the van and deftly back up her car, moving backwards up the ramp into the van. Trust me, that is a feat in itself!! We’ve all taken turns trying to maneuver her chair and failed miserably!
After parking in a very precise place in the vehicle, straps on the floor were woven between the wheels to secure the chair.
Now for the remarkable part of this story, in this tale of two churches!
Every Sunday morning, four to five deacons from the church met Vickie at the foot of the stairs.
It’s important to get this image in your mind, for it is truly the Church in action, a real modern story of God’s grace demonstrated through God’s people to one of the least of these in the Kingdom!
With two men on her left and two men on her right – with a count of one-two-three- they together hoisted that hefty electric wheel chair – with Vickie still seated in it – up that flight of ten steps into the sanctuary!!
Every Sunday! I can’t recall any time she was left waiting at the foot of the stairs unable to attend church.
She often sat alone. Sometimes the care provider would join her, other times she would stay in the van until services were over.
When Pastor Jerry called that morning in 2000, the congregation had already moved out of the center of town into a newly constructed ADA compliant building. Vickie had been attending there for some time now.
Trying to keep my voice calm I asked, “Is everything all right?”
“Oh my, yes! Everything’s fine,” he reassured me. I let out a sigh of relief.
He continued, “But Vickie has asked to be baptized.” He paused. “I’m calling to see what you think of that?”
My mind started racing. He shared more of the details of that morning at church. Vickie was seated near the front, to the side, where she always sat. The sermon was about following Jesus. She listened to every word.
He went on, “When I gave the invitation I asked anyone who wanted to follow Jesus to walk forward and give a confession of their faith in Jesus, she didn’t hesitate.”
He continued, “She put that wheelchair into gear and drove straight over to where I was standing and said, ‘Me too!'”
“Would you be available to meet with Vickie and me to discuss the matter,” he asked, explaining it was important to ask a few questions before agreeing to baptizing her.
“Of course,” I replied. We scheduled the meeting and then I hung up!
This!! Yes, this!! This is what I wanted for her – to come into her own!
I was thrilled to pieces. Not because she chose to be baptized, even though that is very important, but because she had the means – her car – and she had the agency to follow her own desires. When an invitation to walk down the aisle was given, she could do so!
I’ve wondered how many times when she asked someone to move her into a space they decided whether it was appropriate or not for her to be there?
How often, when trying to speak up for herself, was she shushed?
How often, with best intentions, was she reminded, “Honey, remember, you can’t do that, you can’t walk?”
On October 1, 2000, Vickie not only spoke up, she advocated for herself!
She needed me only to help translate her wishes and to be sure the pastor understood her answers to the questions asked. Pastor Jerry saw Vickie and valued her for who she was.
Raised to Walk a New Life
The baptistry was filled and waiting in the foyer. We again carefully explained to Vickie that she would be placed completely under the water, giving her an opportunity to change her mind.
I was concerned her fear from a near-drowning incident years before might cause her some trouble.
“Me know,” she responded without any fear, a bit perturbed we mentioned it!
“Ok, honey, are you ready?” Pastor Jerry asked, waiting patiently for her reply.
“Yes!”
“Do you believe Jesus is the Christ, the Son of the Living God?”
She responded, “Yes!”
He gently placed a tissue over her nose and mouth. Three of us held onto her arms and leaned over the sides of the baptistry to lower her body slowly under the water.
Her pastor spoke forth for all to hear, “I now baptize you in the name of the Father, and of the Son, and of the Holy Spirit” while together we submerged her body into the water and quickly brought her forth.
Her face beamed as she came forth from the water. There was no sputtering or choking at all. I was impressed how well she maintained physical and emotional control in this most important event. We lifted her body up and out of the baptistry, wrapped her with the thick towels spread upon the floor and changed into dry clothing.
I can’t remember for sure, but I think we loaded her into our VW Vanagon and headed to Red Lobster where she feasted on shrimp, her favorite. We were all celebrating her baptism, yes! But secretly I was rejoicing in this act of resistance on her part.
Baptism as Resistance
According to Alan Streett, “the twenty-first century church, especially in the West, suffers amnesia. The church has lost consciousness of baptism as a rite of resistance.” 4 I agree, but I doubt Vickie viewed this as an “intensely political act,” or an “act of subversion,” yet, her action revealed otherwise. 5
She didn’t fall for a theology that keeps disabled persons out of sight, left alone in a corner. She didn’t fall for the teaching that people with developmental and intellectual disabilities are incapable of making their own spiritual decisions. No, whether she knew this or not, her’s was an act of resistance against the “prevailing power structures of the day!” 6
She had found a believing community who accepted her for who she was. Where she was weak, they were strong – figuratively and literally.
When the invitation was given, her “me too!” came forth. She knew she’d be taken seriously, revealing complete trust with this congregation.
There would be no shushing, “You can’t do this honey, remember!” Instead, on that Sunday morning in October, 2000, the actions of those faithful members in a small church in Nebraska would speak louder than any words ever could.
We see you, Vickie! You are part of us! Welcome to the community of God!
This is more than a Tale of Two Churches! It is a testimony to those throughout the ages and around the world who dared to dream of a better way.
Whether it was building a structure that welcomes the otherwise unwelcome-ones in society into their midst, as did Axtell years ago – or being the literal hands and feet of Jesus, as those in Minden who bore Vickie up. They are our inspiration. In resisting the culture they imagine ways for God’s kingdom to flourish on earth.
But, this is also story that shows how doctrines and theologies can just as easily cripple the hearts and minds of able-bodied persons and it reveals how healthy doctrine and theologies set the crippled mind, heart, and body free!
It is a testimony to how good doctrine and theology should work in the world. In welcoming the least of these, the church bravely goes beyond what is normal by opening wide its doors for all.
And most importantly! This is a tribute to Pastor Jerry (now deceased) and to the leaders and deacons at Minden Evangelical Free Church! I do not know all of their names, but I do know Someone who has seen their heart!
**The image at the top of this blog is an artistic rendition of the interior of Zion Chapel in Axtell, Nebraska.
- Bethphage Mission, founded in 1913, was the vision of a Swedish-born Lutheran pastor who desired to build an institution for “the afflicted” and “those in bonds of incurable diseases.” The book, Miracle of the Prairies, tells the remarkable story of Rev. K. G. William Dahl, his wife, and the many who sacrificed to bring his dream into reality out in the plains of Nebraska. Dahl died in 1917, at the age of 33, only four years after founding Bethphage.
- https://www.accessibility.com/resources/timeline-of-disability-rights
- https://en.wikipedia.org/wiki/Bethphage_Mission
- R. Alan Streett. Caesar and the Sacrament: Baptism: A Rite of Resistance, (Eugene, OR: Cascade Books, 2018) pg. 7.
- Caesar and the Sacrament, pg. 10.
- Ibid., pg. 10.
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