July is Disability Pride Month, and throughout the month we are offering a series of weekly articles written by parishioners who experience disabilities, both visible and invisible, and by family members of those with disabilities. In these reflections, they will share how disabilities intersect with their faith and participation in the church community.
by Betsy Wehrwein
There were 27 people in the operating room when our identical twin boys were born, including my husband and our priest. All eyes were on Twin A and Twin B. At 20-and-a-half weeks they had been diagnosed with twin-to-twin-transfusion syndrome, a situation where the blood flow from the placenta is imbalanced and one twin receives too much and the other too little. We had made it to 30 weeks and out they gently were taken.
Afterwards, as I lay in a hospital bed with a hemoglobin of 7, a neonatal intensive care fellow came in and told me that Twin A had a grade 4 brain bleed, explaining where it had occurred and what the future implications might be. As she went on with her medical-ese, I allowed her words to thankfully fade out. I was the mother and all I wanted to do was get my arms around my children, hold them dearly and nurture them. Later, I found out that while all the attention was being paid to Twin A with the bleed, Twin B, who had been born at two pounds and 13 ounces, had crashed and been given a blood transfusion. One teaspoon of blood had saved a life.
The egg had split and life expanded. The twins were named David and Jonathan, with the latter being given the nickname of PJ. One twin has a moderate hearing loss while the other’s hearing is excellent. One was diagnosed with spastic diplegia cerebral palsy and the other has literally danced their way through life. One takes their time and is quite pensive and the other is quick on the draw. However, both are exquisitely sensitive in physical and emotional ways. A precarious life can do that to a person.
How grateful we were for Saint Paul Public Schools’ Early Childhood and then its K-12 Special Education programs. They had some of the very best angels around. They helped teach my sons to advocate for themselves and equipped classroom teachers, fellow students and parents with the support and knowledge of how to set the tone for learning and social interaction. What had begun as a roller coaster ride with twists and turns, eventually became a path where one learns how to move and grow and just be in creative ways.
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God created humans in his image, in the image of God he created them.
I have always thought of Jesus as someone with arms outstretched. True, he was on the cross, but also, he had a welcoming embrace. Especially when it came to children. Jesus was a teacher, a storyteller, a spiritual healer: your faith has made you well – it has always been about faith. Parents can emulate this behavior too. Children can grow up to be adults with outstretched arms, to know suffering, but also to know that they are not alone.
I did indeed get my arms around them and love love love them. They have two older brothers who closely held them too and carried them and chased them about. I will never forget the day when our second son Neal came home from 4th grade class, distraught because one of his classmates had said that PJ was handicapped, and Neal had never ever thought of his brother that way. I will never forget when I took the older boys to St Vincent de Paul to buy birthday presents for their soon to be 7-year-old brothers; they selected a lovely flower-print jumper dress for David to twirl in, and twirl he did.
The twins are now 33. About a week ago I had a conversation with PJ and asked about the word “disability.” He took issue with the syllable “dis-” and wanted to focus on “ability” instead. “The human race is temporarily able. Life is precarious. Nothing is guaranteed.”
PJ is vulnerable because he has balance issues and walks with forearm crutches. He navigates thoughts around scarred brain tissue and that can take a bit more time. At the age of 14 he walked into Vertical Endeavors and a man with outstretched arms invited him to give rock climbing a try. This encouragement became a practice that built his upper body strength, allowed his legs to stretch and he developed confidence. He learned to drive a car with hand controls because an occupational therapist at Regions Hospital was willing to work with him. I had gratefully found her after a woman on the phone at Courage Center told me straight up, “Oh, he’ll never be able to drive.”
David, with his hearing aids, turned toward the cello and played in an orchestra where he found acceptance and community in music. This acceptance drew him toward others and his arms have remained outstretched, especially now working with the Spanish speaking community. His sensitivity has developed a pointedness towards social justice.
In our faith, we are governed by Matthew 7:12: In everything do to others as you would have them do to you, for this is the Law and the Prophets. For me, it is important to think about who is at the center of this commandment. What I am learning is that I am not at the center of this understanding. Something mystical is instead. I am not looking at a person to assess them for their ability to make money. Or what they need to do to be more like the rest of us. This is not a “you scratch my back and I’ll scratch yours” way of thinking. But, If I observe, if I take the time to listen, if I am open, I may receive an understanding of where that person is, and in doing so, I can perceive Jesus touching them, right where they are.
