…we meet countless parents and family members who are battle-worn from advocating for equality and support for their children with disabilities. These parents can be fierce, because they need to be! They are forced to advocate/argue/fight against systems and societal forces that actively discriminate against their children. Too often, they face these same barriers and oppressive attitudes in churches, synagogues, and faith communities that claim to care for all God's children.
I laid in my stretcher outside the operating room listening to the metallic clink of the doctors preparing their tools and I gave my fears, hopes, and doubts over to God. I had connected with family and friends. Made sure people knew I loved them. The odds were good I would see everyone again but my health had been declining steadily for two years and I didn’t trust my body anymore.
Wentworth Miller says when you’re in survival mode, there isn’t space for “we” or “community.” It becomes all about “I” and “me.” He is not relating specifically to the challenges of disability, or faith communities fostering , but he shares valuable information about the challenges that may arise if you feel singular, different, and alone; if you have to spend the majority of your days in survival mode over the long term.
The Psalmist says “you knit me together in my mother’s womb” which depicts a sculptural process of knitting an intricate and individual item. Knitting is flexible, sculptural, but not terribly efficient. It’s a loving form of art where the artist spends time with the project, enjoying the process of creating.
So much of what we do on a daily basis we do without qualifications. We walk through every conceivable season of a person’s life with them because we are the ones who happen to be present when the call comes.
While the incarnation is a unique event in Christian theology, the experience of embodiment is not. I have found the image of the Word made flesh to be a powerful paradigm for seeing the experience of my minimally verbal children, both in their relationships with me and their expression of faith.
He was middle aged, had Down Syndrome, and spoke no English, but he said hello and quickly answered my introductory question about how long he had worked in that shop. I apologized for not understanding his answer and he realized that I was at a disadvantage in this conversation.
Mirabel Madrigal does not have a visible disability but many people with disabilities may relate to her in some ways. [...] The Madrigal family initially characterizes Mirabel as “unexceptional,” and “not special.” [...] people with disabilities are often characterized in opposite terminology, being referred to as “special” or “exceptional.” However, the premise of the distinction is similar
Caregiving is one of the hardest things there is to do well. Second to it in difficulty is writing about caregiving well.
It is a weekday morning, and I am present, here in this beautiful place in this good company, and I am doing my job. These are not stolen moments, but given ones, gifts we have given to one another.