From Doing to Being – Changing the Language in Disability Ministry

Picture Courtesy
 CNN

The CNN headline screamed out at me – Invisible in India –The story of the disabled boy tied to Mumbia bus stop. The article begged for an actionable response. 

What should we do?

One of the sub themes, which kept boiling up at this past SITD conference, was the importance of “being” instead of “doing.” As a ministry

Missions and disAbility -- Meet Pastor Heather

Heather @ SITD 2014 Dallas

Confession time:  I've never been out of the country -- well not really.  Went to TJ during my college years in Southern California -- and spent a few days in Montreal in 2006 at an AAIDD conference.  But I've never been somewhere outside my comfort zone in a foreign land in mission service.

Heather has.

Not just short trips, but a for a couple months at time, she helps out with the Joni and Friends ProVision Aisa in India program.  When she's not doing that, she's speaking, writing, and moving.  A Baylor Bear and then later M.Div grad, she's an ordained minister ready to speak her voice and write her story.

She's already published several books, including My Friends & I - An inclusive children's book (available on kindle and paperback).  More books are in the pipeline.

If you haven't met her you can -- at Heart of Heather.  It was great to meet a new friend!

Human Life, Liberal Societies, and David Watson #SITD

David @ SITD 2014 Dallas

One of my conference mates this week is Dr. David Watson.  A NT professor, he currently serves as the Dean of United Theological Seminary in Dayton, Ontario.  As both of us are parents of young children with Down Syndrome, we have some immediate bonds.  I've enjoyed some of his blog posts reflecting on the proceedings this week at #SITD.

Here's a short sample of his writing on Stanley Hauerwas, John Swinton, and Hans Reinders from the sessions yesterday:

 If our society places a high premium on autonomy, individuality, and agency, then people who are impaired with regard to their decision-making capacity occupy a very strange space, They are ostensibly people, though without full command of the capacities that define personhood and serve as ports of entry into the social world. They are outliers, and that is a dangerous way to live!

To enjoy the rest of his article, click here!

What about Wichita?

Tom Racunas & Nancy Thompson

While conferences drain our mental energy, the real work begins when we leave.  In our table discussion today after listening to John Swinton, Stanley Hauerwas, and Hans Reinders, one member suggested that the theological reflection may be good in academia, but the real rub comes in the trenches (I paraphrased a bit).  To a large degree, she's right!  What good is a conference if we return to our home cities, churches, schools, and jobs without affecting change?

Today, I finally met my neighbor.

Literally.

It took nearly two years, dozens of emails, and a 6 hour trip to Texas.  Ironically, we discovered we live less than 800 yards apart and shop at the same grocery store. Tom Racunas serves as the Director of Ministry with Persons with Disabilities for the Catholic Diocese of Wichita.  I found out that besides a shared home owners association, we have common passions -- we also discovered that the other has a key to unlock greater ministry potential within the city. We both agree that to hold a consistent pro-life position requires congregations and Christian schools to intentionally educate persons with disabilities and fully welcome them into the life of their chosen congregation. Alone, our wheels might spin; together we have the potential to affect faith based societal change for multiple catholic and evangelical congregations.  This is 1 Cor 12 in action.    I look forward to working with him.

Tom also serves on the board of NCPD (National Catholic Partnership on Disabilities) along with Dr. Nancy Thompson (Iowa City, IA).  Nancy and I had a great time getting to know each other over the last few days as the NCPD and Friendship Ministries were set up next to each other.

#SITD #TheologyDisability

Meet the Campbells, Special Needs Consultants #SITD

Cathy & Ken @ SITD 2014 Dallas

I got to meet Rev. Dr. Ken Campbell and his wife Cathy today.  Ken serves with MNA (Missions North America) in church planting with the Presbyterian Church in America.  Shortly after beginning his D.Min program in 2006, his wife received a spinal cord injury.

Fortunately, Gordon Conwell did not let him drop out of his D.Min project and he was able to shift it towards a disability focus. Currently he serves as a special needs consultant and is helping shape church planters with a spirit of hospitality. His academic work focuses on developing best practices for special needs programs in churches and helping pastors effectively utilize resources in developing intentional community with people with disabilities. You can reach him at kcampbell@pcanet.org.

Judging by his cap, I'm guessing he's rooting for Calvin College to beat Hope College in basketball this year.  As a one Jan-term alum of Calvin, I'll join in...Go Knights!!

Friendship, Hospitality, Missional Living, and Church Planting

I'm taking a break (at least for an hour) from blogging about the great things going on at SITD 2014 Dallas by catching up on some of my favorite blog posts.

I saw this post from Mark Stephenson, fellow Friendship Ministries board member, and Director of Disability Concerns in the Christian Reformed Church (CRCNA).  It's so good, I'm linking to it and copying it directly below.  I'm glad to hear some young pastors have caught the vision that the best disability ministry serves all humanity.  The practice of vulnerability and hospitality in relationship is the best way to transform a church. (all bold markings below are my emphasis)

Meet Rev Dr. Theresa & Ken Taylor #SITD

When I scanned the list and saw that Theresa and Ken were coming, I was looking forward to seeing them again after 8 years.  Our story goes back to a week long Minnesota Special Touch Summer Getaway in 2006, where I was serving as a personal care attendant for my friend Richard.  In our small Bible study sessions, our group of a dozen people got to know each other well.  If you want to hear a good story involving a speed boat, water, faith, and fear -- just ask Ken!

Due to unexpected illness, our reunion was delayed by two days.  But we spent 3 hours at dinner Wednesday catching up on life's journey -- kids, education, setbacks, goals, a book contract, and new vision (a funny word to use to describe ministers with visual impairment!) Their excitement for what God is doing in their ministry can hardly be contained.  Finally, congrats to Dr. Theresa on her D.Min from Bethel Seminary! Can't wait to hear what God is going to do next!

#SITD #TheologyDisability

Reflections: Day 3 #SITD Dallas

The great thing about this conference is every session is engaging, stimulating, and simultaneously disturbing.  One's mind is troubled and is forced to re-hash systems of thought while rejoicing in what God is doing.  This is an exhausting process.

Which makes Day 3 challenging  -- great speakers and sleepy eyes.  Yet they kept me in rapt attention. On the third day, our focus was on the intersection of disability theology and missiology.  As a pastor in a denomination with roots in the 20th century missions movement (Assembly of God), I love this topic.  It was also the topic of one of my early lectures in 2005 on the intersection of missiology and Christian special education at a NACSPED conference.

Judith Snow appeared via a pre-recorded video and then a live Skype interview from Canada. (Thankfully for me, her talk was captioned -- I've struggled this week listening to lecturers without closed captions -- I usually do OK conversationally if I'm directly in front of someone and can read their lips -- which is hard to do in conferences).

Early on, Judith presented her image of God and the church aided by an imaginative disability friendly lens -- God is a paraplegic -- who requires a host of personal care attendants to do (his) work.  This metaphor quickly brings to mind that of some of my other friend's (with disability) discourses on God and the church -- God must have cerebral palsy -- because (his) body doesn't follow (his) commands.  Both these images are helpful to me in the light of I Corinthians 12.  Yet, I am aware that these comments would be considered by others to be too daring in reshaping a picture of Christ.  These illustrations, however, point to the mission of God (missio Dei), the Johannine's "works of God glorified", the Great Commission (variants in Mark, Matthew, and Acts), and my own pentecostal understanding of Acts 2.  Judith reminds us that the gifts of God are distributed throughout the soma (body) of Christ and that even those things which may be annoying, even disturbing, are often God's gifts for which all of us must be receptive.  For the church, as the body of Christ, to effectively spread the eschatological evangel, persons with and with out disabilities must have a space to mutually share, touch, and affirm one another with their charisms (gifts).

Ben Connor @ SITD 2014 Dallas

Dr. Ben Connor (whose book I reviewed last year) continued the missiological theme in the afternoon by illustrating the proccess of creating Orthodox icons as a metaphor for the body of Christ. Delving into the start of the modern mission movement (Edinburgh 1910) he drew upon the insights of Bishop Leslie Newbegin in the 1970's.  While the archaic language of his call to action alongside those with disabilities is problematic, the spirit in which it was written is not.  Those of us who have studied Newbegin and missiology realize his role in shaping the Christian movement in India against culture and privileging the marginalized.  A fellow pastor attendee from India -- Raj -- and I chatted after the session, rejoicing in the legacy that the Indian church has made.  Perhaps as a surprise to us in the western context, the Indian church has many more people with multiple disabilities in clergy and pastoral positions.

As always, I enjoy Ben's work -- it comes from a position of passionately working alongside youth with special needs for twenty years. If you want to read more about the formation of missio dei, I would suggest reading his book -- Amplifying Our Witness alongside John Flett's the Witness of God.

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever.  Amen!  (Eph. 3.20-21 ESV) 

Sandra Jensen / Annie Golden Heart

It's been a great week and exhausting week here at SITD 2014 Dallas.  I got to relax tonight by skyping with my wife and two daughters.  My daughter with Down Syndrome turns 12 this week.  She held up to the screen/camera the ornate extensive artwork conveying to me what she wants for a present.  I think she wants a cat... or dog... or is that a spider?  I'll move mountains to get my daughter what she needs!  (Which is why I don't resonate with some interpretations of the parents of the man healed of visual impairment in John 9).-- as long as it's not a cat, dog, or spider!

Dr. John Swinton @ SITD 2014

My wife asked me if I had seen any viral comments about the President forcing kids with Down Syndrome to die.  Honestly, I am just tired of political rhetoric distorting the true ethical issues and denying personhood to persons with disabilities and their family caregivers.

And no, I hadn't...

 Some of these untrue or half-true viral posts do more damage to the disability advocacy movement.  So to set the story straight, the National Down Syndrome Congress released a statement in its  e-newsletter late last night which I dug out of about 100 unopened emails. You can read the full text of their statement below.

This brings up some of the issues we are grappling with here at #SITD.  I am looking forward to hearing more conversations tomorrow, particularly with ethicists Stanley Hauerwas, Hans Reinders, and John Swinton.




------------------------------------------
(From emailed newsletter update 17 June 2014)

The Sandra Jensen Story

In 1996, Sandra Jensen, a 34 year old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.

Today, there is an internet petition (change.org) asking the President of the United States, "Why are children with Down syndrome not considered for organ transplants?" While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.

Creating Space, Listening to Stories... #SITD

I love listening to the stories of people's call towards ministry and their particular role at the intersection of disability, theology, service, and ethic. As I've said in some previous posts, I'm aiding my memory. I'm meeting some incredible people in the field and getting to know just a brief bit about them.

Devan & CJ @ SITD 2014 Dallas

 Devan Stahl (M.Div - Vanderbilt) is completing a PhD program at St. Louis University in bio-ethics focusing on the human genome project.  I heard Hans Reinders liked her paper -- that's about the highest compliment you can get!

CJ has spent 35 years of her career working in every possible position at the Brenham, TX SLS center - but has taken on her biggest role yet - chaplain.  Only in her current assignment for 2 months, she told me that her years of experience working in the facility has been invaluable in her ability to minister to numerous persons with disability on a regular basis.

Chris @ SITD 2014 - Dallas

I finally got to meet Christopher Philips today.  It's actually been 8 years since I first mentioned him in a post on this site.  He's been an immense help keeping databases and lists up on his site FaithAbility for years for both this event and the AAIDD Religion and Spirituality Division.  Thanks Chris!

#SITD #TheologyDisability