One Body, Many Ways: Alice Wong and how leadership from the disability community can save our world.

Scripture Reading: “One Body, Many Parts” 1 Corinthians 12:12-27

Secular Reading: “Disabled people know what it means to be vulnerable and interdependent. We are modern-day oracles. It’s time people listened to us… So many people see me and presume that I have a poor quality of life because I have a tube attached to my face and that I sound different. I refuse to allow the medical industrial complex reduce me to my comorbidities, risk factors, and inability to perform X number of activities of daily living. I find strength and hope from communities organizing mutual aid and providing care for one another. I call upon the power and wisdom of my disabled ancestors such as Carrie Ann Lucas, Stella Young, Ki‘tay Davidson, Laura Hershey, Ing Wong-Ward, and Harriet McBryde Johnson. I think about them often and know their light will show me the way forward.” — Alice Wong

When we cleaned out my grandmother’s house after she had died, I got to see my grandma through a different lens: the lens of the things she left behind.

I found the pictures in the hallway closet, tucked inside a shoebox, pushed back into the corner. I took out each faded picture and was a little shocked. They were pictures of children in wheelchairs. Some of them in color, some of them in black and white. I recognized the walls of the State Hospital.

Two generations of women in my family worked at the state hospital, caring for patients throughout the span of five decades.

I looked at their pictures. I noticed their bodies were twisted in certain ways as they sat in their chairs and I called out to my mom.

“Hey, who are these kids?” I said to her when she walked into the room. She took some of the pictures out of my hand and shuffled through them. “Are they kids grandma took care of when she worked at the hospital?”

“These aren’t kids, these are adults.” She said back to me.  “They look that way because had physical disabilities. When you didn’t know who they were, they looked frightening, but once you got to know them and their personalities, gosh—I loved them. Your grandma loved them. I remember each of their names.”

We looked through some of the pictures.

“This is so against HIPPA,” I said. “But I understand it was a different time.”

“Yes, there were no patient privacy policies in the 60s and 70s” my mom reminded me.

She went on to share that my grandmother would often take patients home on the weekends and take them out on the town during the day, out for walks and to the parks. My grandma said people would stare at her, at the patients she brought home, but she maintained that everyone belonged in the community, and that people can just stare all they want.

And I understood that type of love you have for the people you care for, to want to advocate for their space in the community. I made my family three generations of women who worked at the state hospital in South Dakota as a youth counselor. I loved my patients. A sincere love where you want all the best things for them—where you want the world to know them just as much as you know them and love them.

Any of you who provide care to someone– you know that type of love, right?

As a therapist and pastor, it’s the type of love that pushes me to advocate for social justice. For all people to belong in the community.

It got me thinking about whole person care.

And you don’t have to be a caregiver to know what a difference this type of care can make.

When was the last time you saw your doctor or another care provider? What was that experience like? Did your provider look you in the eyes and really see you and hear you? Or did they just take notes and nod and say “mmhmm” every now and then and then feed you some lines.

If you received whole person care, or person-centered care, I bet you felt seen. I bet you felt heard. And oh boy, if you have ever not felt seen—you know those feelings!

We know the difference this type of care can make, when we are seen as whole people.

For a while, because my only experience with people with disabilities was those who lived at state hospitals, I didn’t know that disabilities could be so diverse and wide. I’ve been so fortunate to meet so many people through ministry who have shown me how expansive and wide the body of Christ can look like. And I’ve also been fortunate to have friends with disabilities who can call me out on my crap and give me wonderful teachable moments.

In our conversations, people with disabilities shared with me that sometimes people have looked at them with fear or disgust, or talked down to them or treated them like a child. Or started helping them without asking if they even needed help in the first place. They’ve shared their stories with me and I am very grateful to have my views widened.

I appreciate those conversations that remind me of the whole body of Christ. It reminds me of our scripture reading for today.

Paul is talking to the church about valuing each part of the body of Christ, how the eyes are just as important as the hands. The feet are just as important as the ears.

What I take away from Paul’s writing is that all parts of the body working together ultimately means honoring. All parts honoring all parts.

And I think we get this as the United Church of Christ when we advocate for accessibility and inclusion. But I think we can take it further.

We need people with disabilities in places of leadership. We need their voices front and center. This is how our community progresses. It’s not enough to be inclusive at the table, we need to place people with disabilities at the head of the table.

Alice Wong gets this. Is anyone familiar with the activism of Alice Wong?

I want to read a little bit from her biography so you get a picture of her life and the amazing work she is doing:

“Alice Wong is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), a community partnership with StoryCorps and an online community dedicated to creating, sharing and amplifying disability media and culture. Alice is also a co-partner in four projects: DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, #CripLit, a series of Twitter chats for disabled writers with novelist Nicola Griffith, #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people.

She has been published in the New York Times, Vox, and Teen Vogue among many other mult-media outlets.

In 1997 she graduated with degrees in English and sociology from Indiana University at Indianapolis. She has a MS in medical sociology and worked at the University of California, San Francisco as a Staff Research Associate for over 10 years. During that time she worked on various qualitative research projects and co-authored online curricula for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability, Independent Living, and Rehabilitation Research.

From 2013 to 2015 Alice served as a member of the National Council on Disability, an appointment by former President Barack Obama.

In 2020 Alice was named by Time Magazine as one of 16 people fighting for equality in America.

Today, Alice is the Editor of Disability Visibility: First-Person Stories from the Twenty-first Century, an anthology of essays by disabled people that was just published this past June.”

What an incredible life and incredible work.

I first learned about Alice when I was looking for articles around Covid 19 and how to build up communities of hope during times of despair. I was struck by the quote included as today’s thoughts of the people. Alice says, “Disabled people know what it means to vulnerable and interdependent. We are modern day oracles. It’s time people listened to us…”

I want to repeat that “It’s time people listened to us.”

Amen and amen. Covid-19 has changed our world, and as we raise questions in our communities about how we are going to get through this and how we are going to move forward, I wonder if the disability community doesn’t already have some of those answers. It’s time we listened to them.

And not only listen, but put them in positions of leadership. We honor the body of Christ when we put people with disabilities in leadership positions

One of my favourite moments in this last year was attending my friend, the Reverend Laura Cannata’s ordination. Rev. Laura is the justice minister at Robbinsdale Parkway United Church of Christ. She is disabled and has smaller hands and so the church gifted her a communion set that was made for her size of hands.

I wept. I openly wept seeing this.

This was not the church making changes to have Rev. Laura adapt to the church, this was the church changing to adapt to Rev. Laura.

This is the future of the church I want to belong to, one that is forming and reforming to include more and more people and centering the narrative of the marginalized. Those are the leaders I want.

My grandmother would be so proud.

So where do we go from here?

Well, we ask folks with disabilities and then we listen to them and lift up their leadership.

We center the narratives of Alice Wong and others disabled writers. We have conversations with disabled clergy and listen to them.

We work on changing our theology about how we view disabled people.

I think we do a good job of this at Living Table. When we preach on the stories of Jesus or learn about them in Bible study, we remind each other that the stories about people searching for healing aren’t just about physical healing, they are about restoring the person to the fullness of the community.

We do a good job of this at Living Table with our commitment to being a WISE congregation and our commitment to A2A: accessible to all.

A big learning curve for me was learning that for some disabled people, they do not want to be healed of their disability. We name this as respecting physical diversity and neuro diversity. And I think this is similar to having the church change to center people with disabilities rather than asking the disabled person to change to fit the church.

We are on the right path AND we still have learning to do.

How is the Spirit calling each of us to respond this morning?

What is being laid on your heart?

The good news is that there is an abundance of knowledge and ideas out there— and right here in this congregation. We are so fortunate to have people with disabilities right here at Living Table.

This week, I invite you to widen your lens. To listen to people with disabilities especially during these times of pandemic and social unrest. Find hope their words, their encouragement. Know that this life can be lived in so many different ways.

Keep space in your heart for surprises. We never know what’s around the corner and together, as one body of Christ in many ways, we can keep moving forward.

Amen.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s