Disability

Revelation Trumps Rules

By. J.C. Mitchell

I remember some professor in class explaining that for Jews keeping Kosher, or the rules for Shabbat, had different levels of interpretation, which is   why some groups define the rules differently.  I remember in college lighting the match for a Jewish roommate for Shabbat, and I was confused as to why using a lighter or match could be considered work.  This prof explained that some people added human layers of rules in order to assure they were following the Divine’s Desire.   Explained that way, I am reminded of how rules can be comforting.   We know what to expect, and within a rule you can convey great nuance as well as simple restrictions; this is found in the Ten Best Ways, the Ten Commandments.  Yet as we know, rules can be left to interpretation.

Not only are rules as subjective and as personal as the person who lights a Shabbat candle, we often desire the social other to follow the same rules. This is how we design our religion and our religious practices.  However, we balance rules with revelation.  Amos even laments our rules (5:21-24):

I hate, I despise your festivals,

   and I take no delight in your solemn assemblies.

Even though you offer me your burnt-offerings and grain-offerings,

   I will not accept them;

and the offerings of well-being of your fatted animals

   I will not look upon.

Take away from me the noise of your songs;

   I will not listen to the melody of your harps.

But let justice roll down like waters,

   and righteousness like an ever-flowing stream.

 

Jesus takes on the deeper religious rules of scapegoating and sacrifice and stands up to continue living.  Jesus is the revelation that our desire is to follow the desire of God and not the rules humans have layered upon our lives to assure our own order or comfort, often hiding the blood of those sacrificed for peace.

Nonetheless, it seems that the churches today that have more rules also have more people in the pews.  We claim to desire a relationship with Jesus over simply following rules. However, recently I had a revelation of my son using a napkin.  My seven-year-old son has autism and I can tell you simply making the rule, “use your napkin,” does not work.  Months of us reminding him positively, after every bite, has created a situation where he now wipes his hands and face as often as most boys his age, perhaps even a little better, as he has incorporated this act into his ritual of eating.  Not by a rule, but through the intense relationship. 

This is how everything is taught. For our child, including safety rules like, “you can’t go outside without permission,” would be as effective as me making burnt offerings.  So we make the ritual of asking “Go outside, please,” part of his routine of going outside, through the intense relationship of us making that a positive expectation, but is that not what we need to do as the church. 

We are commissioned to be the Church, The Resurrected Body of Christ, to be the revelation in the world; not rules.  Rules are easy--trust me for I know--as I desire to make a few rules for my son, but alas, I will need to stick to the relationship of revelation, and that helps with Church as well.

A little more exciting then napkins and door, here we are feeding birds at the zoo.

Communicating God without Words—A Father’s Thanksgiving Reflection

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I spent my first four years of life running around Rosedale, Queens, New York City.  I have many memories of that house and neighborhood, before moving to the suburbs in Connecticut.  I remember the houses being very close together, and I knew where the ice cream truck parked for the night.  I remember one girl playing house and making me her “husband,” but I did not recall she had an identical twin.  I worry I may have unintentionally cheated on my pretend three-year-old “wife.” Most of all, though, I remember the airplanes. Rosedale is located at the end of a runway of JFK International Airport.  It was exciting.  The planes were quite impressive and flew close enough to rumble knick knacks off shelves.  


The God I knew in my childhood was much like these airplanes.  Powerful, impressive, and just beyond my reach, while making me shake in my boots.  Once I moved to Connecticut, I ran around the woods instead of the end of a runway, but I would always stop to see jets flying overhead. I struggled with my relationship with God, for I could only imagine the power and strength and not the vulnerability and love Jesus modeled. God, to me, would come and go with great power, just like those planes. I thought I had left that image of God behind, but it took my son for me to see the Divine in the small, the vulnerable, and see God every day. 


Today, my wife, son, and I live near SeaTac Airport in Seattle, where we see the airplanes often.  I am glad we are not at the end of a runway—we have many knick knacks—but we do get to see the airplanes landing almost every time we leave the neighborhood.  There are times when we take local roads right near the airport and a large airplane flies only yards above our vehicle.  Both my wife and I think it is amazing and I often remember that house in Rosedale. Our five-year-old, A.J., is unimpressed.  


Though A.J. must hear and see these large airplanes—at a friend’s home that is in the flight path he will cover his ears when the older louder ones pass overhead—my son stays in his own little world, which apparently has little interest in these loud, powerful, colorful, fast, airplanes.  He is much more interested in the texture of various plants, the repetitive sound of his own voice (called echolalia), jumping, trees, and the alphabet. A.J. lives with autism, and so my wife and I do as well.


I continue to point out the airplanes to my son, not knowing if he cares.  I wonder how he will remember these days, because he does not often use words to communicate.  He will probably remember specific trees, for it is clear that he looks at the tree in entirety, often even proclaiming aloud, “Tree,” to new ones. When I see an airplane impressively fly overhead and my son is not interested, I am reminded how different my job is as a parent of a child with an invisible disability, because I am able to recall being able to run with the older children at his age and be involved in their activities and trouble, but A.J. does not engage with other children.  I notice that he is generally happy, but I mourn most that I don’t have the boy to share airplanes, play ball, or joke with.  I have to adapt, but at times I simply want to cry that my son at five still does not call me “papa,” but I don’t for it would be selfish of me.  


Every parent can say “this is not what I signed up for.” Honestly, I know neurotypical children who I would have a very hard time watching, let alone living with.  There are some things about having a son with autism that are actually advantageous.  When we play with toys in the store, he always puts them back before we leave.  He never talks back, which I observe is the greatest difficulty with most kindergarten children, especially when it comes to negotiations. However, he is still not toilet trained and is above the weight limit of any changing tables. He does not understand the need to communicate.  He has been trained to ask for a few things he desires greatly, via a communication board, such as tickles, deep pressure, back rubs, and pizza. He knows many nouns and actually understands many of our directions and commands; but he currently has no desire or ability to communicate his needs, wants or thoughts.  This is frustrating. 


Before my son, I had two dogs that were very happy and received a lot of my love.  One was a Labrador Retriever-Rottweiler mix, named Manchester, who was very energetic, gentle, smart, and obedient. Not only did he know simple commands, he was smart enough to understand complex sentences.  He would perk up at certain words like out, food, couch, ball, walk, vet, car, and would figure out what was happening.  People were impressed with how much he could understand and how well he listened.  We would often go to parks together and even walk around the small New England towns we lived.  It was wonderful dog/person relationship.  Manchester had his routines. He communicated in his own way, by a nudge, a grunt, or by jumping when excited.  


My son communicates much like Manchester. Manchester nudged and whined when he wanted something to eat. So does, A.J.  I share my experiences with this canine and my son, because to the outsider, the relationship must seem quite similar. Those who do not have a child like A.J. need some way to understand how different life is in my house.  Comparing my son to other children, especially children without a disability, is unfair, but people do that constantly.  As a result, they either see my son as less than other children, or else excuse his peculiar behavior by say things like “all children do that.” A.J. does certainly some things like a typical five-year-old, such as wanting candy, but much of his behavior is closer to that of a typical 18-month-old, not a five-year-old. Most people do not want to see that A.J. has a disability, and they say things with good intentions, but it is clear they are avoiding the reality of his vulnerability, because they do not want to face their own.  


My wife and I have had some great progress using communication boards with A.J., we encourage him to sing songs, and we often hear things he enjoys because of his echolalia. So far, other children have loved A.J. and enjoy his energy.  Sometimes they ask why he doesn’t talk, but generally, they seem fine with it.  At times, I have observed some kids making fun of A.J. for still wearing a diaper.  Luckily, he doesn’t understand teasing yet, but it saddens me that other parents must have modeled such behavior, and my son will always be vulnerable to such teasing.


With A.J., I must constantly think about containment. A.J. will run or slink away if his interest is not held.  Shopping is a chore even without a child, but now that A.J. does not fit in the cart it is nearly impossible to go grocery shopping with him. At a large gathering one time, he snuck out from the children’s program and was found many yards away. Worse still is his lack of awareness around cars.  I must have a hand or be ready to grab him at any moment.  My wife and I have considered one of those backpacks with a leash, but it does not help teach him the awareness that can only be learned by holding a hand.  We model everything as best we can. We move together more on routine and simple clear words, “stop, come here, juice” and a few others.  Often I narrate what he is doing and keep saying things like, “Look an airplane.” I have been told this will eventually help him.  


While many of the therapies seem more like tricks and training, there is so much joy and exploration my son has.  Though he has trouble with communication, he still adds to the conversation.  He does not suffer, but he does need special assistance so we can know more about his gifts.  He also has developed humor, from tickling, to the scene of Snoopy wrestling with the chair on the Thanksgiving special. I look forward to more jokes and laughter in our home.


We do not work out of an economy of deficit, but one of gift.  That is, each person adds to the conversation with their unique gifts.  This doesn’t mean that disabilities aren't difficult; they are. But they are made even more difficult when neurotypical people see those living with disabilities as a drain on resources; as a deficit.  


A.J. does not have a disability in order to be a life lesson for me, or others, nor is he one of the “least of these.”  We all learn from our children.  What I’ve learned from my son who lives with autism, is how terrified others are of the vulnerability they observe in him.  Most people do not want to admit that A.J. is different. They try to avoid treating him in a patronizing way or they choose to see his difference as a life lesson.  They rather say, “It’s ok” or “He will be fine,” or they start a story with, “I know someone with autism…” People do not want to deal with their own vulnerability, so they avoid seeing A.J.’s disability.

 
I want to share A.J.’s exciting gifts of energy, humor, exploration, letters, counting, (in English and Choctaw), and cuteness, but also share the frustration and difficulty of having autism.  This is why I shared the odd thought I often have, that my son reminds me of my old dog. It is difficult for me as a father, and yes I believe we will progress pass this stage of communication, but we will never remove autism from our reality.  No pity needed, though it does require some special accommodations.  When we look at all people for their gifts and not their deficits, we see accommodations as important for all of us so we can include everyone.   We all benefit and we need to invite everyone to this vulnerability.


I have intellectually talked about a God that is present and interconnected with everyone; I know I have preached it many times.  However, since my son was born I truly had to learn it through my whole being, right down to my heart.  I do not know all of A.J.’s gifts yet, but he has encouraged me to see my own gifts, rather than my deficits.  In my heart I held the image of God as powerful and unattainable, and thus I saw God often only when I felt guilt or shame, when I saw myself as a deficit.  I now see God in the dirt and trees through A.J.’s obvious vulnerability.  No longer does God fly past and make me tremble, I am rooted among all of God’s children and creation, rooted and interconnected by the dirt and mud puddles that reflect my own gifts.


So when the airplanes fly overhead years from now, I am hopeful my son will be able to say, “Look an airplane.”  Even if he does not say it in words, I am sure he will recall the love of his mother and father and understand the Divine is closest in the rooted trees that are vulnerable to drought, wind, and humanity, interconnected through the dirt they all share, no matter their ability. 

 

 

J.C. & A.J. visiting Big Tree in 2012

J.C. & A.J. visiting Big Tree in 2012

Recommending Wilderness Blessings

By: Rev. J.C. Mitchell

Not that many years ago, my wife and I went for an ultrasound which left us scared, and we were given an appointment for another ultrasound at the hospital with a skilled doctor who simply analyzes visual pictures created by sound waves.  The worry was that there were two markers of Down syndrome.  Being clergy, we shared this fear in prayer at the church we attended together in the evening, after working at our respective morning churches.  A retired minister came up to me in fellowship time and was pastorally navigating this raw situation.  This wonderful man, David, was sharing very carefully that all people are people, when I said to him we are not mourning having a child with special needs, we are mourning the loss of our perfect dream and admitting we are scared, for no matter what, this is our child.  He smiled and said, “You will be good parents.”  At that hospital appointment, we found out that there was no reason to be concerned, but I am glad we had that moment, for I believed it helped us as parents to deal with our son’s autism which became obvious when he was about 18 months.  We had this cathartic moment to remind us that our fear is ours, not our son’s.  

There are many stories of children with special needs and often I share from my experience, but today I want to recommend a book by Rev. Jeffrey M. Gallagher, Wilderness Blessings: How Down Syndrome Reconstructed Our Life and FaithThis is the story of a pastor whose son Jacob was born with serious heart issues and Down syndrome.  Looking back through the Caring Bridge entries during the two surgeries of his son’s first year, he shares what it means to see the Body of Christ to include everyone through the lens of differing abilities.  Gallagher asks, and then admits by answering his own question, “So what makes Jacob’s story so special then?  Nothing.  And everything. And that’s exactly the reason why I felt so compelled to write this book.” (163)  I am so thankful that this very specific story shared is understood to be also a universal story for people with different abilities.

I must admit that I have been obsessed with Theology of Disability since Gallagher’s editor and mutual good friend, Rev. Dr. Beth Hoffman, introduced me to his way of thinking at the same seminary Gallagher attended (he graduated the year I began). Now having a son with different abilities and a new ministry that upholds creating a loving inclusive culture no matter of ability, I would of course read this book.  Also, having had a sister that was born with a heart condition that required surgery when she was a young child, I was compelled by this story of” J-Dawg’s” (Jacob’s) surgery.  However, I do not simply recommend this book to people that have children with Down syndrome, or other different abilities, nor for people that know what it is like to have a child need serious surgery.

I recommend this book to those that do not, as well as those that do have a child with different abilities. So often I talk about the theology of disability to pastors and lay people at conferences or coffee shops (or anywhere I go), and generally the response is to reply “that is interesting.”  Then they tell me some sort of success story they know, either in their church or another.  I listen intently because I love success stories, but I try to bring it back to why it is important to actually understand what it means to be an Open and Affirming church, which is not simply to be for equal marriage.  Don’t get me wrong--I like the success stories, but I recall once when serving in Massachusetts a youth saying we are not racist in that state because we elected Deval Patrick governor.  I know that is a success story, but I also know there are still systemic racism in the Bay Colony. 

Jeffery Gallagher engages the reader through this very tough first year in the raw entries from the Caring Bridge page.  He also brings in other future events up to the current reality, and leads the reader to understand what it is to have a child with special needs.  While not all have such life threatening surgeries, it is a story that resonates with the reality of raising a child that has different abilities.  Gallagher admits, “Looking back on these posts has revealed just how much of Jacob’s journey at the hospital is a metaphor for the life that we have lived with him.” (137)  There are steps forward and steps backward, the uncertainty that is the only certainty, and advocacy is needed throughout Jacob’s life. 

Gallagher writes this story in a very compelling narrative for those that know nothing about having a child with special needs.  You will be drawn into a wonderful story of vulnerability and love, and gently introduced to the theology of disability, which will only enhance one’s appreciation of the church as a place of belonging for everyone. 

To purchase this wonderful book please go to Chalice Press Website.

Gallagher, Jeffery.  Wilderness Blessings: How Down Syndrome Reconstructed Our Life and Faith.  Chalice Press: St. Louis, Missouri, 2013.

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Don’t Just Welcome--Create Belonging!

By JC Mitchell

I feel I am supposed to write on Sense of the Assembly Resolution 1327, “Becoming a People of Grace and Welcome to All,” that was passed at the General Assembly of the Christian Church (Disciples of Christ) and thus I will not.  Ok I will, but through another resolution that was voted on a little later that business session, 1322 “Hearing Accessibility for Participants,”  for the following reasons.  First off this resolution assumed the passage of 1327.  “What do you mean?” you may ask.  Well here are the first two “Whereases:”

WHEREAS, the Christian Church (Disciples of Christ) affirms the inherent worth of every person; and
WHEREAS, the Identity Statement for the Christian Church (Disciples of Christ) states “…we welcome all to the table as God has welcomed us”

See!  Everyone is affirmed and we welcome everyone.  I love that it emphasized exactly what 1327 emphasized, that all means ALL! 

Secondly, this is a much needed resolution to make our churches more accessible to all people, and the “therefores” that followed are simply statements that the General and Regional Assemblies, and local congregations, can be involved in including everyone at church.  It was truly a sense of inclusion at the Assembly with some great ideas for including the hearing impaired with follow up at the 2015 General Assembly.  I plan on bringing forth ways we have made our ministries more accessible to those with hearing impairments both in worship and on-line for the workshops for 2015 General Assembly as per the resolution.  

There are a lot of good ideas and help out there if you simply ask for help to include everyone in church.  But inclusion often stops at welcome.  Have you heard of the church that keeps voting down the access ramp, with the great reasoning they don’t need it because no one comes who uses a wheelchair?  (And actually they say “in” a wheelchair).  Well I have, just as I have heard churches that welcome everyone, including LGBTQI people, but say things like “we love the sinner but…”  We cannot simply include or welcome, we need to do the hard work of making people feel that they belong.  As Thomas Reynolds says, his test for inclusion is knowing that if someone is not present they are missed, and they miss the community; that is belonging.

So 1322 & 1327 were adopted, but we have work to do.  Did you know there was a Loop system at GA and Communication Action Real-Time (Captioning) available?  Did you know that some people were terrified of the ramifications of voting yes on 1327?  So get to work understanding there are many places we can improve making our table a table of Belonging!

I believe these Sense of the Assemblies are important only if we believe they do not end at the vote, and if we consider them all. Because all means ALL!

PS.  And I resolve myself to work on a Sense of Assembly, or perhaps an Item for Research and Study to challenge us all to make our table a table of belonging for people of all abilities, so if you are interested in helping construct that to challenge us all as these (and all the others adopted at GA) do, please contact me.  Thanks.

 

 

 

Let Us Pray for Belonging for ALL!  

Let Us Pray for Belonging for ALL!  

Exploring Theology of Disability for LGBTQI Advocates

By J.C. Mitchell

I am looking forward to the General Assembly of the Christian Church (Disciples of Christ).  I am not very excited that I have to travel from Seattle to Orlando, but traveling alone I will get a lot of reading completed.  I am already creating my list of books I need to know, since I have not figured out osmosis, not from due from the lack of trying to sleep with a book on my chest.  I have a long list but you are welcome to add to the list as well, if you will seriously take this book I just read on your own list.

The book is The Bible, Disability, and the Church; A New Vision of the People of God, by Amos Yong.    In a sentence it is a book that carefully creates a Biblical hermeneutics of suspicion of the presumed ableist perspective.  I believe his method is commendable, especially by admitting in the preface that through thanking Kerry Wynn, “[…] to how deeply I myself was mired in a normate (able-bodied) worldview, and irony indeed […]” (xi),  There were a few places where I may have disagreed; for example, I uphold only the authentic Pauline writings and Yong is fine with all traditionally attributed to Paul.  You would imagine some differences between a Pentecostal Scholar who was born in Malaysia, and a Disciples Minister raised in New England, and that is partly why I recommend this book, because so many of the recent books I have read have been people of European decent. 

Some of you may know that the theology of Disability has been pivotal to my theology and it became very personal, as my son lives with autism and is very limited in communication.  However, I write this book review for those that are allies of LGBTQI persons, for I know those working with the theology of disability is quite aware of Yong’s work.  (I confess I was delayed in reading this 2011 work, but as I admitted, my reading list is long).  I do not know where Yong stands on the issues of LGBTQI, and I started looking for such information, but then realized that the truth I know and the truth I read will not be affected by his stated beliefs elsewhere.  Yes it may be harmful and even wrong, but we cannot only read theology of only those we agree with entirely.

The importance of this work is how Yong handles the scriptures that are and have traditionally been read to marginalize and oppress people with disabilities.  This is of course an issue for the LGBTQI community as well, but truly with less problematic scriptures.  For instance, Jesus says nothing about homosexuality, but the healing passages have been often used against people with disabilities.  And let me note that it happens by conservatives and liberals alike, but the normate worldview blinds one from their insensitive readings of scriptures.  Therefore, I believe seeing how a careful reading that is aware of the able-bodied assumptions will help LGBTQI advocates to do the same with the few scriptures used for oppression.

Not only is it important to be able to deal with the scriptures, but what I really believe people will get from  LGBTQI advocates reading this is how our normate (able-bodied) worldview influences our reading of the scriptures and thus our theology.  By exploring this assumption, it will help in explaining the assumptions of those that have been influenced by hetero-centric assumptions, while learning about another population that needs liberation. 

[T]here is nothing intrinsically wrong with the lives of people with disabilities, that it is not they who need to be cured, but we, the non-disabled, who need to be saved from our discriminatory attitudes and practices, and that people with disabilities should be accepted and honored just as they are. (118)

Go ahead and replace the words disabilities and non-disabled as you want, but know also by admitting you have been influenced by the normate worldview, as both I and Yong are also not immune, will help us all understand how to love the other and include everyone. 

Amos Yong Book On Rainbow Flag.jpg

Work Cited:

Yong, Amos. The Bible, Disability, and the Church; A New Vision of the People of God.  William B. Eerdmans Publishing Company; 2011. 

SCOTUS Decisions—Reflections Part 2

By Rev. Mindi

This morning on the West Coast I quickly turned to the news at 7 a.m. just in time for the breaking news to be revealed that DOMA had been struck down, and in the revealing of the decision and the minority opinion it was clear that Prop 8 would also be struck down.

I rejoice in that there is no federal reason for denying people the right to marry or to deny benefits for certain types of marriages. However, the ruling leaves it still up to states to pass equal marriage laws.

As many have already noted, if one really is for civil rights, for human rights—we cannot rejoice fully. Voting rights have been restricted; Euro-American cultural values have been valued as the norm; we still do not acknowledge the T in LGBT. Trans rights are often ignored or scoffed at, though there are currently several court cases for trans teens fighting for their rights in state courts. Teenagers are the ones speaking out for their own rights because teachers and administrators have failed to do so.  And as a parent of a child with special needs, even though we have had the IDEA act renewed in 2004, we find our rights and our son’s rights violated everywhere we turn in the public school system. And we are Euro-American—add in other cultural differences and different languages, and we find that even Supreme Court rulings do not guarantee rights for all will be granted.

As people of faith, we must lead the way on human rights. We must listen to the minority voices in our congregations and beyond in our communities, and work for justice for all. It’s easy to take a quick look at one’s congregation and see some of the issues they face, whether it’s the right to marry, the right to receive disability benefits, the right to get a driver’s license; it’s much harder to know whose rights are violated with the lack of a comprehensive immigration law, who doesn’t have access to adequate health care, and other rights that may be violated or ignored. If we assume a certain issue does not apply to our congregation so we can ignore it or evade it, we are failing the community at large.

Vulnerability as the Way of Christ

I recently created this Pecha Kucha to help explain how I see Mimetic Theory and the Theology of Disability combine to help demonstrate how we know Christ through vulnerability.  You may ask what a Pecha Kucha is, and that is a good question.  It is a Japanese term for a simple presentation format where you show 20 images, each for 20 seconds. The images advance automatically and you talk along to the images, thus it is a perfect way to have many presenters without going on and on.  Of course I am sharing this via the internet, for the other purpose of Pecha Kucha is to intrigue people about the presenter.  I hope you are interested in the ideas or at least intrigued and thus connect with me through Open Gathering, Dmergent, the FB, or Twitter to keep the conversation going.  So you will need 6 minutes and 40 seconds (well a little longer as we included an intro screen).  There is a navigation element if you need it as well.  You will also need Flash. 

I hope this raises more questions, so we can together be vulnerable and find the Christ together.  Just click on the image below to start the Pecha Kucha...

White Need to Talk About Race and Privilege

By J.C. Mitchell

I remember getting ready for school when I was a pre-teen on March 17.  I was certainly wearing green and then I put my favorite jacket as it was a chilly morning.  My mother was adamant I not wear the Mets jacket I wore most days.  She was yelling at me about wearing orange.  I argued that the jacket was blue and simply had orange lettering for the Mets, I was sure that was fine since it was clear I was wearing green and would take my jacket off when I would arrive at school.  My mom was not happy with me, and needless to say I went to school with an older jacket.  I knew we were Irish, but I had no clue about the Troubles and that Orange was the color of the Loyalists and Green the color of the Nationalists, and I certainly did not understand why that should matter in my Connecticut School.

I share this experience because I find it funny, and I believe my mother’s passion should be honored.  One should be proud of their heritage and should not forget the injustices and oppression of your ancestors, be it because of ethnicity, ability, sexuality, gender, skin color, or whatever I might have missed.  I believe there was certainly oppression to the Irish, and I had experienced some of this reality when I lived in Northern Ireland.  However, this reflection is not about The Troubles, or even about immigration; it is about being White.

I had no idea what it meant to be White, when I had to put my Mets jacket aside that day.  I thought I was White, but that was always defined against other people, specifically skin color and/or language--specifically Spanish, yet not those that spoke Castilian Spanish.  I learned between my argument with my mother and living in Belfast that Irish immigrants became White, and not simply because of our pink complexion.  There are certainly many social and political things that occurred that made me, my ancestors and my descendants, White.

However, of all of us that are now in the privileged status of White in the United States, we don’t talk about our inclusion in this label (and it is a label, but with much privilege).  We avoid the subject.  We often invite people that are not White to talk about this subject.  I have been at many conferences and assemblies where the conversation on race, immigration, ethnicity, or diversity is being ran by the small group of people assembled at the gathering that are not White. 

I remember watching the film Traces of the Trade. I was moved by such a film maker who challenged White people to talk about slavery and the economy that all of us benefited from such cheap labor.  She traced her family roots, discovered not only did her family have slaves, profited greatly from the slave trade.  Even us Irish, who came later, benefited from this reality, which we cannot deny.  If we do not have this conversation, we are doomed to keep seeing people who are not White as a deficit that we must find a way to include in our discourse, because White will only be defined by those not.  So even when we desire diversity, we are looking for those that are non-White to give us the answer, instead of having the real conversation ourselves.   It will be difficult, especially as it will often reveal privilege, even for those that worked hard.   If we have the hard discussion, and read and interact with theologies from non-White perspectives, we will benefit, even if it means a larger table.

I know this to be important because I observe that my experience as a child of a first generation mother has many similarities with immigrants today.  But I don’t want to be naïve to claim my experience is just like theirs, for there is a great complexity, but if those who are White are not able to admit this complexity of our own history, how are we truly to live into the diversity we uphold?

Currently I often speak and write about inclusion of people with disabilities, and many of us who do promote the civil rights of those with different abilities, are directly affected by disabilities.  One of the things I often dream of is for people without disabilities to have the conversation (in an intelligent and educated way) of what it means to inclusive of people of all abilities.  It would require very thoughtful and real conversation about the privileges one has in a society and how we assume normal.  We do the same thing with race—even with great intentions; we assume what is normal, if we do not talk about it. We need to be open to different views, our privilege, and the fact sometimes we are wrong.  And certainly we do learn from being wrong—well, at least I know I do.

 

 

 

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Autism Awareness in Your Congregation

April is Autism Awareness Month. As you may have figured out by now if you are regular readers here, JC Mitchell and I are the parents of AJ, a 4-year-old with autism. We’re not the first parents to have experienced not-so-welcoming churches, and we’re not the first clergy parents of a child with special needs to advocate for their child. There are some great resources available and I encourage you to check out resources on welcoming people of all abilities.  You can also read back through JC Mitchell’s posts or mine, especially The Starbucks Welcome

But here are a few tips to help get you started when a family with a special needs member asks about coming to your church or shows up on Sunday morning:

--First, welcome them. Greet the family like you would anyone else. Do what you would normally do for new visitors to help them feel welcome.  In one church I visited, a few members chose to sit with me in the back where I was sitting, so I was not a visitor with my child by myself.  It’s a good idea for any visitor to have someone sit with them and worship with them!

--Ask questions about what would make them comfortable and what would be helpful.  For example: “What is the best way to interact with your child?” “How can we help you this morning?”  

--If the family has a child and you have childcare or Children’s church during worship, invite them to those places but don’t pressure them. Some families prefer to have their children in worship with them, some children won’t leave their parents and go with strangers.  All churches are different, and many newer churches are including of all generations.   If a child goes to a different space than the worship service, ask questions about what their needs are and what can be done to help.  Don’t assume you have to have professional child care workers who know about autism or other special needs (most parents haven’t had professional training, either!) Just ask basic questions about their needs, especially any dietary restrictions or allergies (just like you would for any other new child) and assure the parents their child will be safe with you.  Make notes and listen if there are any specific concerns (for example, our child will wander if he is in an open area—he likes to explore).  It is ok to ask a parent to help with a specific situation—such as using the bathroom if the child has toilet issues.  But by all means, do your best to allow a parent to return to worship or Adult Sunday School as you would with any parent.

--Have child and adult “helpers,” if you have other children in your church.  Identifying a slightly older child or youth who likes to help with children can be a great asset. For example, there is one older child in my husband’s church whose job it is to keep a specific eye on AJ so he doesn’t wander off during Children’s Church.  Other adults who maybe don’t want to be drafted for Sunday School might be willing to help out with a child with specific needs.

--If a person with special needs remains in church, know that they will not all respond the same. Some may be sensitive to loud noises; others (like my child) may make some loud noises. Some people have to get up and move around. Some families choose to sit in the back and others choose to sit up front.  As I have always shared, I often hear the sounds of adults saying “Shhh!” louder than I have heard any child’s noise.  Know that there may be some distractions, but as a special needs person gets used to the worship, the routine and structure, they will be more comfortable and surprise reactions will be reduced.

--Don’t assume all families of people with special needs want to immediately connect with other families of special needs—most likely, they just want to connect with this new congregation!  If they ask about other families with special needs, then help make the connections, but otherwise, introduce them and get to know them like you would anyone else.

--If a family looks like they have had an uncomfortable experience, ask them what you can do next time to help be more welcoming. Show that you are willing to listen and learn. 

See a pattern here? Most families with special needs simply want to be welcomed like everyone else.  And all too often, they aren’t.  There’s an assumption made by well-intentioned church members that the needs are greater than what we can care for, than what we can provide.  There’s worry about situations that might come up. Most of the time, parents have thought this through before even stepping through the door. Most families are aware of what information needs to be shared to make a comfortable experience for everyone.

I know that as a pastor, I don’t always have it right.  There are times I still have failed to make people feel welcome, but I try to learn and work with my congregation to help make children and adults of all abilities feel more welcomed and included in worship.  So this month, for Autism Awareness, let’s all try to do what we can to be a little more welcoming of people of all abilities, members of the family of God.

Stretch Out

I get angry. I am human.  I am mature enough to note the anger and once the physical traits of anger pass I try to discern why.  That is, once my cheeks are no longer red, I try not to react in anger; I try not to hold onto it.  I try to assume we are all people on the same boat, or globe, and God is the only true “other.”  I actually find this much easier with things that you know would make one angry, such as the two times I have been punched in the face (great stories for a different article).

Small things do seem to drip into my bucket of potential anger.  Some of it is irrational and I am aware of that, but I am going to share a short list of things that get me angry.  I would include things like driving slow in the left lane, people who talk on mobile phones as a clerk serves them, and that extra-large socks are often placed on the bottom rung, (Hobbits are not real; tall people have the larger feet), but I want to share some of the rational and irrational things that pertain to being a dyslexic and raising a son with autism.  It is okay to laugh a little--I will, as I think of them:

  • Jokes about dyslexics said by non-dyslexics
  • After discovering my son has ASD, telling me about someone you know with ASD
  • Telling me “oh he is just 4, he will grow out of it” (yes, 4 year olds are not like 18 year olds, they are smarter).
  • When my son steals food, saying “it’s OK,” as we discipline him. (He understands a lot and this is not OK)
  • Putting text on top of an image on a website; I cannot read it.
  • Saying “oh I have trouble spelling, too.”  Guess what: dyslexia is not just about spelling.
  • Stating “We welcome all children,” and discover that it is only if they sit still and pay attention.
  • Saying “when my child moves out.” Yes, it is irrational, but for many people I know this is not a possibility. 

I can go on and on, but my point was to simply share where I am coming from, when I read Monday the resolution shared on Dmergent, “…to welcome all.”  Within the resolution there seems to be an inclusive list of people in the welcome, “…race, gender, age, sexual orientation, gender identity, nationality, ethnicity, marital status, or physical ability.” I am glad to welcome all people, and honestly it would be great if we could just say “people.”  I am glad to see it includes physical ability specifically, but I was very troubled that my son with a developmental disability or friends I know with mental disabilities were missing from the list.  I know it was not intentional to keep them off the welcome, for the response I have received has been quite positive.  It is systematic of how people with disabilities both visible and invisible are often dealt with in society.  It was simply another drip for me. 

While at the Emergence Christianity gathering this past weekend in Memphis, Phyllis Tickle said she believed that the last group of people to be included entirely in the church is the LGBTQI.  Now when a friend of mine asked the question on my mind about the disabled, Phyllis answered that there is no scripture against those with disabilities.  I was angry for a bit, but seeing the resolution on Monday reminded me to not react from the anger; but to speak up with love.

I believe Phyllis is both wrong and correct, and that is great.  Being wrong is something I do often, and it is a place to learn, so if I claim that Phyllis can be both, so can I.  When Phyllis was speaking about the very important conflict within the church over the inclusion and rights of LGBTQI people, she is saying it is the last fight over Sola scriptura.  That is, for people who are not including the LGBTQI people, their argument relies on a few verses in the Bible, and they attempt to read the Bible literally on all matters, thus upholding a patriarchal system of judgment and law.  So yes, if the resolution passes within the Christian Church (Disciples of Christ), it is not only an affirmation of an inclusive welcome but that the Bible is not “factional but actual” as Phyllis Tickle would state.

I do believe the disabled are another group that needs to be truly included in the church, and my ministry at Open Gathering keeps that front and center with the disabled, but at the same time, all the others named in the resolution.  Yes, Phyllis said the LGBTQI will be the last group and while I don’t agree with it being the last group, I believe I am humble enough to understand her point is once the acceptance and inclusion of LGBTQI is the norm, the way we read scripture will have been fully brought to a loving way that includes room for Academia and especially the Holy Spirit. Sola scriptura will not have the same power, and we will not replace it with another Pope, but with an organic loving non-hierarchal church.

To go back to the scripture that Phyllis said did not exist to bar disabled people from the church; I know there are specific scriptures in the Hebrew Bible that specifically say things against the disabled, but rarely have I run into Christians who uphold that against each other.  There is not currently a huge division in the church in including people over these scriptures like in the debate of including the LGBTQI.  However, many do take the healing stories and metaphors to an extreme within our own context, and thus create an ethos of the perfect body and mind as synonymous with right with God.  We uphold a platonic idea of separation of body and soul, thus making the experience of the physically disabled simply something to endure until heaven, and/or the developmentally and mentally disabled are disconnected from their soul.   This perspective leads to seeing the disabled as not equal and only in need of our help to be whole.  

So yes, Phyllis Tickle did not include the disabled as the next group because she sees the LGBTQI as a watershed moment, as I suspect the writers of the resolution do as well.  I agree there is something essential to the inclusion of LGBTQI people in the church, in part because as Phyllis points out, it is not just about hospitality, welcome, and love; it is about how we read scripture.

 I declare there are more groups to be included and all need to come to the discussion, understanding that God is truly the only “other,” and we can get upset and angry, but we can also listen to all people and perspectives without snide comments and without scandalizing people. 

So next time you call something, “lame” or God forbid use the “R word,” know it makes me angry, as if someone is using the term “lifestyle” or the “F word.”  The anger must not be returned, but we can share these feelings together.[1]  The more we learn about inclusion, the more we learn it is not a competition; it is the Body of Christ.  There are even more groups of people as well that we need to invite all to the conversation.  We know this, so let us model the love of the great and only other we call GOD.

[1] Mark 3:1-6 

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Invisible Scars

Here is the last post in our series of “best of” articles for 2011, which first appeared on September 1.  It was written by J.C. Mitchell.  Enjoy!

I was walking my 3 year old boy, Anselm John “AJ,” into Headstart the second week of his program.  Another family was just paces ahead of us and I overheard the young boy say to his mother, “that boy is in my class,” and he turned back to say “Hi AJ”  and we kept walking. I knew that the young boy knew AJ would not respond.  I then heard the mom say, “I don’t think he is in your class” and the boy said “he is” and then she said sternly, “then why did he not respond?”  I came to that little boy’s rescue, “AJ does not communicate, that is why he is in this program.”  She responded, “oh.”

AJ is well loved by children.  There are those in church who always try to engage him and my favorite are those on the playground who met him for the first time and follow him around.  Often, they ask why he doesn’t talk and I would respond “he is two” (all the way up to his last birthday) and I should add AJ is quite tall for his age.  I feel the children understand that he is a very loving and fun boy.  He is bright as well, but he does not use words to communicate.  He is not great at eye contact or pretend play.  If you want to know a letter, he’s your boy.  There are also a growing number of words he can spell and he will count up and down, and ignore everyone in the room.  Nap time is a chore for the aides for he would rather recite letters and spell words and not do so quietly.

Many tell us not to worry, and I am pretty sure we the parents are not worrying, beyond the normal worry parents do, right down to checking on them before going to sleep ourselves.  A lot of people, who don’t know him well, tell us he will grow out of it, and I am sure he will, but it may take some special help.  I had special help for my dyslexia.  This week he is being tested by numerous professionals to determine if he is autistic.  I assume he will be “on the spectrum.”  I am fine with that, and I know he is fine with it, especially if he has a book with letters in it.

Church needs to be a place where we understand differences, especially differences that make us uncomfortable.  I realize from the numerous conversations I have people either want to ignore and deny it, or they want me to be confident it is going to be fine.  Both make me feel angst.  I want to scream, but I don’t--I am the preacher.  I would scream that we the parents mourn the loss of the idealized child and every parent will eventually have that experience (or at least should) let us have that experience.  It’s normal.  Or we know there is something different--we live with him, he has had some tests, let us have our new normal--yes it is fine, and he is himself.  The children are the ones who get it; AJ is different, but he is their friend.  The children see him as part of their group, even if he doesn’t talk to them, or play with them.  They are happy even if he only engages for a moment.  I remember one older child who never heard AJ say something, come running to my wife to tell how he said something, and they know to celebrate his progress and encourage it.  They are his best teachers.

I cannot help but think about how Thomas needed to see the scars to know the resurrected Jesus.  The theologian and sociologist, Nancy Eiesland, who died at 44 on March 10, 2009 was what we often label “disabled” from a congenital bone defect.  She would state that she would hope she would still be disabled in heaven.  "The reason, which seems clear enough to many disabled people, was that her identity and character were formed by the mental, physical and societal challenges of her disability. She felt that without her disability, she would ‘be absolutely unknown to myself and perhaps to God.’”(NYT March 21, 2009)

When Jesus appears in the locked room, He displays his scarred hands and His side to identify Himself. The disciples would have known Jesus' face and voice as this was their teacher, their friend, their Lord, yet Jesus displays his wounds. It must be important. He did not erase those wounds even though He conquered death itself. He comes to the disciples to identify himself as scarred and perfect, and us today as well.  Jesus breathes the Holy Spirit upon the disciples directly.  The church was created and "called-out” with this breath.  Thus Jesus is telling us who we are with His scarred hands. We are the Body of Christ with our own scarred and perfect bodies. We participate in the resurrection with our differently able bodies, though not all of our differences are visible.

For my son is perfect even if he struggles with eye contact and communication, even if he ends up “on the spectrum.”  There may not be a physical scar, but he is differently abled.  How as a church do we recognize that our Lord not only showed His hands to show who He was to Thomas, but who we, the followers, are as well.  Like I said above, I came to the rescue of the little boy, who knew AJ was in his class, who knew that AJ would not respond, who said hello with the hope AJ may engage him, for the boy that will probably, among others, help teach AJ to communicate better.  I rescued this boy who was being questioned by his mother by being blunt: “AJ doesn’t communicate.”  I did not come to the rescue of my son.  He will be perfect, if we as a church and society can understand what children understand.

Affirming All God's Children

The week we officially confirmed what we knew, that our son has autism, I had a funeral for a former pastor of the church.  A busy week to say the least and I should have reflected on keeping the Sabbath, but I am pretty sure I am no expert on that subject.  I can tell you that the hardest part of the diagnosis, from the team of doctors who lovingly examined and tested him, was the statement, “we hope it is high functioning.”  It is hard simply because it could be what is not hoped for; “functioning, or low functioning,” etc.  What will that mean for our son and for us, his parents?

I did not have time to think much about that disturbing statement, and certainly did not have the time to dwell on it because of the funeral.  During the family hour I was present with the family of the deceased.  The room was quieting when a lovely older woman and her husband came forward to give her condolences to the daughter of the deceased.  As usual I was introduced as the preacher, and I soon discovered that this woman considered the church I served her church.  She talked about how she was in that church since she moved to that town with her parents.  I figured she must have moved to another town, but I then heard her say they moved to another church for Billy.  Well, I was pretty sure that her husband’s name was not Billy, but sometimes names go right out the other ear, something I am working on.  She then said Billy is her son with Downs Syndrome.

I then shared with this woman that I just found out my son is diagnosed with Autism.  They are very different of course, yet there is a similarity.   I could tell she understood why I shared that with her.  Of course Billy was there but as he was 46 his parents had been going to more services which had been making him very nervous, which she shared with me.  Billy waited in the vestibule peeking around the corner.  So I discovered that she found a Sunday School class where he felt comfortable and included at another church years ago, when he was a young adult and thus moved to that church.

A little later after she left she came back in and waved to me to come to the vestibule.  She wanted to introduce her son.  We had a wonderful conversation and he even shared that he was scared.  I reassured him, and befriended him, as she mothered him.  It was a lovely conversation.

I was reassured that my angst about the statement, “hope for high functioning,” should not hijack my life.  If my son is very happy and loving in his own way, and if he is not able to function on his own, it does not mean it’s the end of the world.  It means we will have a different life that is certainly centered on love.  I could see in my new friends how their reality was a special reality, and it will be fine.  It was wonderful to meet a pioneer of raising a person with special needs (especially in a rural area).

Yet what interested me the most is how she had to find a new church for her son with special needs.  I do not know exactly why she moved her family, but I must ask the important question: how do we welcome children with special needs?  My favorite example is the leadership my wife, Mindi, showed as an associate minister in a church near Boston, for there was a family that had a child with downs syndrome in her youth group.   The family had been going to an open and affirming church, a church that took pride in welcoming everyone; however, the parents continually received reports that their son was a problem.  They did try to work with staff and volunteers, but it became too much.  I am sure that church was relieved that they went to the church my wife served.  They asked after a few Sunday School Classes and Youth Group, how he was doing, which my wife assured him he was doing well and making friends.  I am sure that was a gospel news to the parents.  To involve the youth in the worship service Mindi would have them read scriptures.  She would prepare them by making them practice.  She did the same with this boy with downs syndrome, and often he would do quite well and other times his pronunciation was not clear.  She did not give the assignment of the scripture that was being preached on to any youth that was not consistently clear and articulate, but she had all the youth who were willing read during a service.

At that church there were many retired ministers and professors of the seminary, and one day a professor asked Mindi, after an inarticulate reading by this boy, “There are people, including myself, that believe that it is not proper for him to read the scripture, as it ruins the worship experience.  Maybe I am wrong, but...”  Mindi interjected, “Yes you are wrong.”  That was the end of the discussion.

“[God] destined us for adoption as his children through Jesus Christ, according to the good pleasure of his will, to the praise of his glorious grace that he freely bestowed on us in the Beloved.” (Ephesians 1:5-6) To welcome all we most see ourselves, equally as adopted siblings.  We need to be the voice for those with special needs, thus I commend the professor, who spoke the prophetic words, “maybe I am wrong.”  There is great joy in being wrong when it opens the door for God’s Divine Light.