Episode 20 – Puncturing the Illusions of our own Ableism and Flawed Ideas of Normal (with Tom Reynolds) part 1

Episode 20 – Puncturing the Illusions of our own Ableism and Flawed Ideas of Normal (with Tom Reynolds) part 1

Tom Reynolds
Tom Reynolds, PhD

 

Shownotes: PART I
A conversation (in 2 parts) with

the author of Vulnerable Communion: A Theology of Disability and Hospitality, by practical theologian Tom Reynolds

 

Bio:
Tom joined the Emmanuel College (part of the University of Toronto) faculty in 2007. He is committed to an interdisciplinary, practical, and relational vision of theology, his teaching and research address a range of topics related to constructive theology (particularly the doctrine of God and theological anthropology), theological method, intercultural and interfaith engagements, contextual theologies and globalization, philosophical theology, disability studies, and the thought and influence of Friedrich Schleiermacher.

His recent Articles

Email: tom.reynolds@utoronto.ca

MIN 4:00

Incorporating the theology of disability into his work training pastors at Emmanuel Seminary, because theology is personal, and not disconnected from the real world concerns of the church and people living their lives.

4:30

About his son Chris sparking his interest and work in the theology of disability.

5:30 Learning that disability isn’t a problem to figure out, but rather it’s about a person who I love and live with, and care with and for, which radically reoriented my perspective on theology.

5:50

Disability and God’s Providence

(Questioning does God “cause” disability as a curse or opportunity for healing…or a kind of moral lesson…)

6:30

His son exploded the theological categories (and assumptions) pertain to Providence…making everything confusing and needing to be re-thought.

7:00

What is abnormal? What is “faulty” humanity?

Amos Yong, Hans Reinders, John Swinton writing on the topic too.



8:15

Tom details the new book on the Theology of Care which builds on the first book.

8:40

Some churches stress Cure over Care in terms of disability.

8:50

(Lisa) My visit to a church where the leadership was interested in healing my son from his non normative experience of the world.

10:00

The range of responses churches have when encountering people with disabilities.

The  church’s “urge to cure” is better than outright exclusion, which plenty of families have encountered.

11:00

It comes from the the idea of remaking and fixing someone in a way that is more comfortable for non disable people and normalcy (what they consider normal). Not helpful or Christian.

12:00

About the church that didn’t want his son as a disruption and a church that did receive them.

13:00

“How can we help you?” was water for his parched soul. How the church accepted and welcomed the uniqueness of his son.

14:15

Hospitality vs. a narrow view of what is preferred.

15:00

The messiness of various kinds of people, in general, means we have to expand our view of grace.

15:30

Who gets to be a full-fledge member of the church community?

and the “mascot syndrome” for those with disabilities.

16:30 – 17:50

Levels and types of responses:

• Tolerate disabled, but they do not get to be a true part of the church.

• “Inclusion” sometimes means means the the “outsiders” get invites to the inside group based on the good graces of the in group, but are still treated as problems to be solved, or people that are to receive the gestures of charity from others (people for whom things are “done for (them”)”. Doing for instead of “being with”.

18:00

What is access? In is not just accommodations (i.e. ramps and special bathrooms) and alterations but ongoing…

Faith communities may be not expecting and not ready to receive those with disabilities.

18:30

It’s not an issue about outsiders, because disability extend to a broad range of issues, both visible and not visible, including mental health challenges that are already there.

18:50

Thinking of the word “BELONGING”

as in “to be longed for when you aren’t there in the fullest sense.”

John Swinton and belonging

19:40

Jean Vanier “In giving and receiving do we really thrive as people”

20:30

Unconscious bias that includes “fear of the stranger” and “fear of the stranger within”.

21:00

We fear weakness and vulnerability.

21:30

Before “mainstream”…the stigma of “retard”…and fearing and disposing weakness.

22:20

Nathan means gift. (Lisa) I learned that I had to recognize weaknesses (shortcomings) in myself the I saw reflected in my son…and communities can do the same type of thing unconsciously.

23:00

“The encounter with disability punctures the illusions of what we think of as our own strengths.”

23:50

The journey with a child with disabilities is isolating.

25:30

Societal epidemic that fears being vulnerable or perceived as weak or unable to perform in ways that are considered valuable by society.

26:00

We have to see what are myths about autonomy, independence, and productivity where are assume we are self-reliant and these qualities are prized so highly. “Able-ism” (The idea that being able in body and mind is normal and most vital which serves as the lens by which we see and judge the world and others outside those parameters as faulty.)

27:00

Tom’s latest work called “A spirituality of attentiveness”. Christianity: St Paul’s strength in weakness serves as a prophetic witness against a society that prizes the strong as the main thing of value. 1 Corinthinians pretense of strength undercuts our ideas of grace)

29:20

We are all only temporarily-abled. (Lisa).

31:00

On hearing “You must be so blessed to have a disabled person as a teacher.” Is this sometimes a reframing of the situation that spins the situation to be more palatable? A glossing with spiritual truths and making it about spiritual growth.

31:20

Instead, Chris’s life seeks its own flourishes, and he may at times function as a teacher.

33:00

Thoughts on intellectual ability (or inability) and belief in terms of Salvation.

God’s works God’s own path in different ways and in different capacities with people. This undercuts my arrogance (as a theologian), so I don’t think I can so easily map it out definitively and universal for all people in all places.

34:00

His son’s atheism (who is the God he doesn’t believe in)…and how that challenges our presuppositions about God.

34:50

“It is in the kind of relationships of mutual belonging that the full image of God is borne out.”

35:30

(Lisa) To my son I said, “when you see someone who is loving you, you are seeing God.”

(Lisa) On how I changed from thinking “right belief” as the way to understand God was central. Our intellectualizing what God has done is not salvific.

38:00

Martin Luther’s theology of the Cross:

The pretense that we know exactly where God is and how God works. Where God is most hidden is where God is most vividly revealed in saving ways.

38:30

“Who I am to declare that God’s grace only works in some ways? and the God’s capacity and God’s own mystery is limited to what I would deem and my community would deem adequate.”

39:30

What the practical theology of disability tells us about Grace with God and relationships with others.

40:00

“The longer I live and work as a theologian the more I realize the limitations of theology and the true infinite mysteries of God.”

Jesus was disruptive to religious pretense and suppositions. “You say this..but I say this…”

Theodicy – The question of why does God allow suffering and how should we think about suffering.

How Tom, as a theologian, answers the question,
“Why would a sovereign God allow a person to be born disable and encounter such suffering?” (This is great!)

The best is yet to come! Come back for part II next week.

Will you help me meet my goal of raising $100.00 in August to keep Spark My Muse going? Use the Donate button on the left sidebar. Thank you for being a big ball of love!

Our Open House Adventure

I’m honored to be a part of Ed Cyzewski’s ongoing series on Doing Justice. I wrote about Nathan, Love, and Justice and if you haven’t read it, or the series, I highly recommend it.

 

Nagoggle

RAILROAD OPEN HOUSE:
JUSTICE + LOVE

Nathan turned 13th on March 8th. The day he was born it was 70 degrees F. The next year it snowed 8 inches. Parenting him has been just as unpredictable. And now we have full-fledged puberty!

Puberty is a hard time for everyone….but for a young man with autism and the family that loves him…it’s harder than “normal”. He’s at once his age (noticing bikini-clad women in commercials, playing video games, growing 6 inches in 18 months, getting acne, fighting with sister, and the rest) and also seems much younger in many ways and can’t grasp things many of his peers do. The phrase “one day at a time” is turning into a mantra I say for sanity.

For a special birthday celebration we opened our house as a kind of Model Railroading, lego display tour with snacks and goodies. We invited loads of people. Grace abounded.

As I’ve reflected further about that day, I sense the presence of God. Those from our church family made special efforts to come. He was lavished with good will, generosity, and affirmation about himself, just as he was. Not a bad day, I’d say!

Here are some photos of the day. (Sorry to say we didn’t get any good video clips.)

 

 

 

 

Would you like to help Nathan add to his layout?

If so, you can donate to his train layout by clicking here.


(If you’ve donated–Thank you for contributing to Nathan’s passion! We will update photos of his railroad purchases from your generosity in the near future.)

Will I see you on the flipside?

(click for source)

Cool cats used to say, “See you on the flipside.” Apparently when you flip a day onto its back you get another day, not the nighttime.

A cat (yes, I’m talking felines now) works the same way. If you flip a cat over it doesn’t hit its backside, but it’s flipside. The right side. The same side it should be on. A dog? Forget it. It’s a trip to animal hospital.

The flipside of a coin doesn’t work the same as a cat. The flipside of the coin is the other side. It’s the head or the tail: the opposite. Most people want money and not cats.

Is the flipside like the Kingdom of God?

I went to my first Special Olympics to cheer on my son in the swimming event. Backstroke and freestyle. I saw the flipside. The Kingdom of God is like the Special Olympics. Those who are always last in life get a chance to be first. It’s actually fierce competition, in case you’re wondering.

Athletes train for months. 70% of the swimmers would have bested me in the pool despite possessing Downs Syndrome, mental retardation, autism, and so forth. Counted out in every other point, but no more. It was a day of winning and accomplishment.

Athletes are grouped according to skill level, and sometimes, age. Poor swimming form meets with disqualification. Did you get that? You can be disqualified! I was stunned.

So, not everyone gets a medal in S.O.? Nope. Only one athlete gets first place. This makes the victory legit. A first place medal really means something. It really means #1. It really gives an athlete something to fully celebrate and gives a family something to truly cheer about.

The huge difference between the Special Olympics and the typical Olympics and most other sporting events, is that each athlete is treated like a winner. Everyone is acknowledged. No one is a loser. No one puts a mic in their face and says, “What went wrong?” If one flounders in the water…well, like a cat…one still gets a participation ribbon. Everyone is accepted no matter how they do.

This is how we can enact the Kingdom of God right now. Find someone who’s usually last. Economically, socially, culturally, mentally, and then find a way to make them first, to offer and enact true acceptance. It’s the flipside. It’s the righted way of the world as God’s wants it to be.

Will I see you on the flipside?

What are some ideas to reveal the Kingdom of God flipside?

winner

What Parents of Disabled Children Wish You Knew (PART 1)

Nathan is weird. Embrace it! (Pssssst. You’re weird too.)

I’m taking a Theology of Disabilities course right now. I have to admit that some baggage that I didn’t realize I was carrying has gotten heavy. I’m putting it down, starting now. The truth is, I realize I have felt disappointed by the church, and by my church. I’m hurt that the church has failed so badly in helping the disabled (specifically my disabled child) feel like they really belong. It’s not just about allowing the disabled to be there near us, it’s about really knowing them, and really appreciating who they are, because God made them, and they are valuable.

Ya see, times have changed. When I grew up in the 1980s, we’d all make fun of kids that “rode the short bus”…maybe not to their face, but imitating “Tards” was something I excelled at. I was hilarious. I was the disabled one, if we’re telling the truth here. I was spiritually retarded. God gave me a precious gift in my son to show me God’s true heart. To show me my true humanity. The disabled personify the weakness we avoid. Nathan helps me get over my human/secular and foolish ideas about what it means to belong and be successful in God’s worldview.

Here’s the other cool thing. God gave me Nathan to share with you, too!

I think, my generation still fears the disabled. I doubt many will dare admit it. (It’s not politically correct, and we can’t look like uncaring jerks, right?) To most of us, the disabled are still a stigmatized and strange group; and we don’t know what to do with them…we don’t know what to do around them…we aren’t sure what they need. It’s all quite uncomfortable. Gosh, we are so glad we are not them. And we’re afraid. Afraid of the unknown and the unfamiliar, and the “other”.

Here’s the surprising twist. Our (non disabled) kids don’t have the same mentality. They don’t. Over the last 10-20 years, those with disabilities haven’t been sent away to special schools. They have been included, or in far closer proximity to typically developing children. The secular, public schools have outdone, and surpassed the church in this area of grace. They have honored and accepted disabled kids more than the church.

Please. Read those 2 previous sentences again…Slowly. Okay, never mind. I’ll just state it again: They (secular institutions and those who are a part of them) have honored and accepted disabled kids more than the church has.

(Yes. You should feel convicted right now. Even crying wouldn’t be over-the-top.)

As a Parent:
As the mom of a disabled child, I find that typically developing children, with just the a little bit of prompting or advice, adjust very well to interacting with my son, as if he’s a real human being who desires friendship. They even enjoy him! (It’s not just charity. It’s reciprocal friendship. It’s the kind of relating where everyone wins.)

On the other hand, I find that it is the parents of these (non disabled) children who are fearful, and unwilling to engage with my son, beyond the superficial. They are fearful enough to not help their child build friendships, or regularly interact with a disabled peer, or near-peer. They don’t create an easy opportunity for their child to grow, learn and become more compassionate. They don’t make it priority. As a child’s primary guide, this is a gross failure.

Church:
But this is different at church, right? It’s a place of acceptance, and hospitality, and belonging, right? God’s love is shown in tangible ways, right? WRONG. My son has more meaningful relationships and friendships, and more grace shown to him with non Christians, in secular (even godless) environments, and with neighborhood children. (See, the government schools have been telling these kids that atypical kids were worth interacting with.)

KIDS @ PLAY
Once upon a time, I bemoaned to a woman at church the fact that Nathan had no friends at church, no meaningful interactions with any church children, no invitations extended to him to play with them, go to their birthday parties, or even watch a movie together (even after we had make a lot of efforts to create those situations and occasions). Her reply, “Well, I can’t force my kids to play with certain kids, and to like certain friends.”

I listened to her statement, and I didn’t really know what to say. This mom was prominent in the church. I didn’t challenge it. Upon reflection, I should have said, “LIKE HELL YOU CAN’T!”

As parents, we do it all the time. We curb or we encourage friendships for our kids regularly. Do we let our kids hang out with teenagers on the corner who are smoking? Uh, no. Does a naughty and petulant child get to sleep over? No. What about the children who bite, hit, or cuss? Do they get to make cookies in our kitchen with us? Nope. We influence our kids all the time. The fact is fear stops our hospitality. We stick with our comfort level, and pick our favorites.

I’m here to tell you that God has given us these different sounding and acting people as gifts, to teach us so much, but we don’t choose to interact, learn and be gracious.

“But I can’t find a disabled kid… What am I supposed to do?”
Well, try harder. Open your eyes. Ask around. Do you want the truth? The facts? Here they are: Do you live near 5 other homes? If you walk down your street, and pass 5 homes, 1 of those homes will be effected by disability.  1/5 of families are effected by disability everyday. 

Do you know more than 6 children? If you know 6 children, 1 of them is likely to have a form of autism, or developmental issue.

Sometimes, I hear this: “Is it my job? How can I be responsible for knowing other people’s needs. I’m just not in their shoes.”
Yes. It’s your job. A frequent reason (or cop out) is saying that the parents of disabled children should just say what they need, and make the efforts to get their kids included. BULL CRAP!

Just thinking up a list of wants and needs would sound exhausting to a parent of a disabled child. Some days, they are just trying to make it through the day without losing their minds. Over 85% percent of marriages don’t survive when a child has a disability. It’s tougher than you think it is.

Listen. These parents have enough to deal with. Wake up! They have enough to do than to also make sure typical children are accepting and relating to their disabled kid/s. Mostly, they are tired. It doesn’t feel worth the effort. Failure seems sure. They are surrounded by frequent disappointments, the broken dream of not having a normal kid, and lots of scheduling issues and therapeutic measures in school, community, and other locations that help their kid or their family. They don’t have enough energy to get people on board with that type of stuff on top of everything else. (Ask them what a typical week is like, go ahead.)

YOUTH GROUP
My son went from being very excited to be old enough to be included in the middle school Sunday School section (See, in 5th grade…you get to sit on cozy couches!!) to now, about a year later, in 6th grade, detesting Sunday School, feeling like an outcast (even more than he had before), and now he doesn’t even believe in God. He says, “God is an unbelievable story.” It must seem like a fairy tell because he doesn’t see the love of God displayed toward him.

Based on the way many Christians behave toward him, he has an excellent point.

Like plenty of other children with autism or developmental disabilities (BTW…”developmental disabilities ” is nicest term for “retards” or the “mentally retarded”), Nathan doesn’t get abstract ideas like, “Is Jesus in your heart?” (He hears, “Is a bearded man in your chest cavity?” Utter nonsense!)

Nathan can’t see or touch Jesus; we have to be Jesus for him. He has to experience love-in-action, benefit from it, and be allowed to return this love as an equal. I don’t know if it’s too late for my church to be hospitable in the way that he’ll to want to be a part of it. I will keep that hope. I’m writing this now to start a change in how we respond and interact, so other kids with disabilities can feel like they belong, and are loved and accepted.

TIPS to get you started (for kids and adults)
• Interaction doesn’t have to be hours of incredibly awesome friendship per day or week. A blood brother bond is not necessary. But, the interaction should be authentic, not out of duty or pity. Something simple like making something for them, sharing something, or just chatting pleasantly with them is plenty for starters.

• Asking about their interests (direct questions are best, maybe even just asking “yes or no” questions, at first), and then actually listening to them (even when you may not always understand them or know what to say) is helpful. They WILL understand when you care about them. Just take a bit of time to be gracious. It’ll do you good.

• Inviting them over for a snack, to watch a movie, take a walk, ride bikes, play with your pet, or play videos games may be enjoyable for them, and of course invite the family if possible. Ask if you can visit them. Create times that are specially for them, even if they are brief periods. 30-45 minutes is fine. (But realize they will love you for it, and want to do it again soon. My son never seems to stop talking about the boy we invited over to play, about 2 months ago.)

• Offer them yourself. Nothing fancy. Invest in them for real, emotionally, and with some of your time and efforts. When you offer authentic friendship it looks different than just a saying or doing the “right thing”. You take a risk.)

• Help them make a craft, picture, or a simple snack, play a game, look at a book, build with legos, and take the time to talk to them, or just be close by and attentive, etc. and show them you like them.

• Offer the parents of disabled kids respite time. Give them an hour or two break, and get the help, information, and extra helpers you may need to care for the child. (Only 10% of churches do this. Change this statistic.)

• Be inviting.
What’s the worst that could happen if you invite a family over to your house? Maybe the child will do something unpredictable, and you won’t know what to do? Maybe you will feel uncomfortable? Get Over it.

MOVING FORWARD:

Where and how have you seen the disabled as full-fledged participants in your community or ministry? (How was it done rightly?)

AND–
How can I help you? If you want to show kindness, or God’s love to a family of a disabled person, or to a disabled person, What are your questions or concerns?

What about including or interacting with the disabled would you like to know? 

What are your fears? Share them.

Let’s get this ball rolling. No question is off limits. Your comments, or experiences can be shared as well.

Thanks for reading. Thanks for changing for the better.
-Lisa 

Juvenile Atheism, and Bunny Studies. (a profound update)

Nathan is my little bunny

I have been observing the spiritual journey of my autistic son, Nathan, quite closely for the last three or four weeks. If you haven’t been following the posts about it, here, this is the short version of the backstory:

Nathan, as of a few months ago, professed to not believing in God. This is a  change from his former beliefs. He now claims that God, the Bible, and the stories of Christianity are “unbelievable stories,” as he says. It’s fake. A fraud.

The undertaking
To me, it seemed like the perfect time to more closely explore spiritual formation (a.k.a. discipleship) and theology as it pertains to disability. Besides encouraging Nathan in his spiritual formation (no matter how messy or personally unsettling or uncomfortable), I’ve hoped to learn from him, and share my findings. This includes studying on the theology of disability, and documenting Nathan’s time of exploration, with respect for my son’s unique spiritual growth process and experience of the world. For my readers, I’ve hoped to encourage deeper thought and consideration about spiritual growth, and the nature of God.

Where things are now
My attention to Nathan’s beliefs and journey, and the recording of them have reached a blockade. Nathan has expressed that he does not want to be filmed, and wants to not speak about the subject. He’s not ready to go about things this way. I will respect this. His basic sentiment is emotional, and preferential, not logical or given to dialogue. So, I will to put this closer study (at least of him, in a personal way) on hold, until a time comes when it seems productive to pick up with it again. I’ll post about it, occasionally, as insights, changes, or advancements occur. This story is far from over.

Bunny Studies
I got up early this morning and went out on the porch with my coffee to enjoy the unseasonably mild morning weather and take in the sights of the creatures that are neighbors with us. We have a few nests, some very vocal birds, several rabbit families, and a very clever chipmunk who has constructed an elaborate series of tunnels that I suspect could be a secret lair. This morning I saw him enter and leave two different homes, scale a brick chimney, shoot into the roof gutter, and out of sight, maybe to the attic of my neighbor’s home. Clearly, he’s up to something.

I saw a mother rabbit and her bunny nibbling at the dewy clover. They were relaxed in their surroundings, and quite hungry. It made me think of one of my favorite children’s stories: The classic called  The Runaway Bunny by Margaret Wise Brown. The bunny hopes to be free from his mother, and tells her all the ways he plans to runaway. The mother rabbit does not tell him stay, but rather shows her steadfast love for him. She accepts his wild heart. She comforts him. For every idea he shares about leaving, she has a plan to love him faithfully and reunite with him. This story was refered to in a theological way profoundly in a  film I saw called Wit starring Emma Thompson. It’s a movie that changed me, and help me see God, better.

Wit was adapted from the play W;t, by Margaret Edson. ( In the context of the play, the semicolon refers to the recurring theme of the use of a semicolon versus a comma in one of John Donne’s Holy Sonnets.) Wit won the 1999 Pulitzer Prize for Drama. The main character, Vivan, a college English professor, is dying of ovarian cancer. At the end, Vivan’s admired, former-professor and mentor comes to visit while she is in town for her great-grandson’s birthday. She comforts her and offers to read to her a Donne sonnet. Vivian, scarcely conscious, declines. So instead, Dr Ashford reads from Margaret Wise Brown‘s The Runaway Bunny, which she had bought for her great-grandson. She remarks that it offers a lovely “allegory of the soul”: Wherever the soul tries to hide, God, comfortingly, will find it. (This section was taken from Wikipedia. Read it in full, here.)

God is our Mother Rabbit. For my son, I am a flesh and blood representation of God to him. I am his mother rabbit, and his is my beloved bunny.

I realize, even more thoroughly than I had realized before, that part of growing up includes the professions of and steps toward independence. Perhaps consistent love faithfulness are the most helpful things we can offer children who are not yet mature enough to make their own way in the world.

Thank you for coming along for this leg of the journey. Your thoughts or comments are quite welcome here.

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