Disability Archives - Page 4 of 5 - Lisa Colón DeLay

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

Transcending gendered language. Capacitarianism… is, & is not…

As I move toward a more formed definition of how gender issues can be transcended in the Kingdom of God, I’m hitting some ~~roadblocks~~ obstacles. Very expectedly, too.

This “Capacitarian” proposal, if you will indulge this term, is not all cut and dry…like so many abstract things, that must come to fruition by enactment. I continue to solicit your thoughts, and input. No, I won’t give the pretense of having a fully-formed argument. “In-process” is the operative word for this excursion. Yet, I bother to bring it up, in the first place, because I see some glaring shortcomings in our current models.

If you see some, too. I hope you’ll mention them.

(And yes, I made up the word for this proposal: “Capacitarian” Pronounced: <CAP-pass-it-Tarry-ann>)

Why does the term “egalitarian” fail us?
A few have (rightly, I might add) asked, something like, “If you want men and women to be treated and appreciated with equal worth, why don’t you just say, or use the term “egalitarian”?”

Here are a few reasons:

• Egalitarianism (proper) is too closely associated with politics and economic interests. It always has been. This has a consequential, and incongruent for our purposes, legal component, too. It is an interference, not a boon, to Kingdom life and the enactment of the gospel.

• Egalitarianism, as in “Christian Egalitarianism”, is most often understood as “the idea that men and women can and should function as equals in the church,” even if (or though) the true meaning is broader. The word means something beyond gender, like, rich and poor should function as equals…able-bodied and disabled…you get the idea. The prevailing connotation has undermined the term, making it less helpful. Simply put: “Egalitarianism,” the term, is not accurate enough. It shortchanges the bigger idea of what God is up to.

• God’s economy never really jives with our own. The actual working out of egalitarianism proves this, as well. It’s not enough to say, “We’re equal, let’s act that way.” Remember something called the Jim Crow laws from 9th grade history class? (Or, even better, maybe you recall them from experience. Separate but equal is ruse, whether intentionally or not.)

The difference is that a worldview change is in order, not just a mode or method of equalizing the parties involved.

• So, I propose we let go of using human economic terms which will move the conversation forward.

Likewise, if we use words for this issue that connote or speak in terms of power, (be it: social, political, gender, economic, racial, etc) we commence at the same starting point as we’ve had before. A secular starting point.

• This faulty starting point inherently undercuts the ironically nonpolitical (apolitical) quality of Kingdom life. My idea is to get away from human-centric thinking, not co-opt with it. There is a reversal of power in God’s economy, but not an antithetical reversal. So, we’re speaking of a whole new model where one cannot simply speak of things in reverse to properly apprehend it, or put it to rights.

• Equal opportunity of the members in the Body isn’t determined primarily by sentiments that “We are all of equal worth in the eyes of God.” True as this is, it is better sourced in the nature of God as person (a.k.a. “personhood”) *See note below. God’s Story is the starting point.

Capacitarianism
• It is in the very nature of God to forgo favoritism based on things humans would see as advantageous. We may give equal opportunity because we think that it is right or just. But this worldview is not about righting wrongs, or getting it right as (humanly speaking) its fundamental application point. Rather, it’s a new way of seeing and living in this world…Kingdom Come. [Theo-centric worldview]

So, moving forward we adopt that characteristic of God for our ways of relating too. Well, more than adopt. We absorb, and live and breath it. (It is the basis of our relating.)

• It is in the overarching plans of God (as seen in the whole of Scripture) that each one of us is “set free”. We reach our full potential as this occurs. We transcend, not just overcome our cultural bondage, et.al.. (See this Lukian passage, and the prophet Isaiah)

• Thus, restrictions based on finite qualities (nationality, gender, physical ability, financial prosperity, etc.) have nothing to do with God’s nature, and his vantage point. All those restrictions are eschewed. Being “set free” is the telos of creation.

• Harmonious/loving relationship, not (primarily) equality, is main aim of children of God…Kingdom citizens, in this proposal.

Paul advises this, speaking often of and encouraging unity in the Body.
Tri-unity (Trinity) is the essence of God. God: Communion and Love reciprocated ad infinitum.

• Hierarchy, then, for our purposes, is a non issue (off the table), in any typical way we would be able to apprehend it, from a human understanding or from our experience. So, I contend that we cannot do well to draw on our flawed applications of so-called hierarchy if we are to move forward on this issue.

One more consideration on the particulars:
I propose that the idea of “the last will be first” is not a speaking of reversal of fortune, or class/status, but a full dismantling of human interaction, economy, epistemology, and eschatology as we have known it. That is to say: we don’t have a good way to gauge who is last or first, as we normally perceive life. I should also say that this means we will be very surprised who may or may not be “first”…whatever that means to God. It will likely mean something different to God, in itself, than to our understanding. God is speaking in terms, and will actualize terms in God’s way. It won’t look like what we imagine it will. I’m not sure his ways ever really have. The whole manner of the Messiah thing/Incarnation came as quite a shock, for instance.

What Capacitarian cannot be:
With regard to studying the marginalized, and in particular the disabled, it is critical to note that “capacity” in human intellectual, ability, or physical terms is not the pivot point for Capacitarian thinking. The capacity denoted has to do with the Holy Spirit giving us capacity for his good work. And, “work” he what God determines it is…which may just be lying there, vegetative, and soaking in Divine love.

A case in point: A severely mentally disabled child is given great grace and capacity by God. A simple, pure, and powerful faith and enjoyment of God which may not be attained by her “normal” peers or her church family in the same capacity. She may revel in worship music, with her whole soul (being); given capacity to be aware of and experience God’s holy love in that very moment.

Likewise, others historically on the margins of society may be afforded capacity in gifting, and understanding, and the Body of Christ utilizes each one in their unique way. (This may not appear to be equal in application, or role, but it is not gender-based either.)

• Suffering, or experiencing trials, it seems increases the opportunities for said capacity. (See James 1)

Each member of the body is given full honor. Each has a gift to give to the Body.

To be continued, next week!

Your thoughts are welcome during this process. Leave your comments.

* Note that person and personality is not exclusive to humanity (human persons), but rather refers to a being, individuality, or creatureliness, plus relational capacity. A being is a person, even a divine being is, in the case that this being is accessible (imminent). Basic Theology asserts God is both transcendent and imminent. God is a Person, Three-in-one.

Next post! The promised interview with Caleb Wilde, Funeral Director and author of the upcoming book, Confessions of a Funeral Director: Working Between This World and the Next.

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

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.

Death of Pet (Nathan encounters mortality/separation, video)

Podcast: Play in new window | Download (4.5MB)

deadfish — Engaging mortality (pet dies) 47 sec video.

Here is another (short) installment in exploring the theology of disability and the spiritual growth/development of my autistic son, Nathan (age 11) who has recently claimed that he doesn’t not believe in God (see previous posts).

Part of the spiritual formation process involves engagement with mortality; and so it does for Nathan too. The two fish Nathan caught at the lake recently died in captivity yesterday. He found this very sad. His approach to their passing was very simplistic. They stopped moving, so they are dead. As expected, he wasn’t able to delve into abstract thoughts on this, or death and life, but yet he still understood something profound had happened (see video). Something sort of normal, yet broken about the world seemed real to him. This world is a place were we can be separated from things we care about, in this case, creatures/pets.

On his own, Nathan expressed that he wanted to bury them. This seemed proper to him. The “burial at sea” choice, a.k.a. flushing his two fish friends, seemed unseemly, when I mentioned that some people bury their fish this way.

He took the jar to the garden and added the remains there himself. It was his own idea. Today he said, “[It would] provide nutrients [to the garden]”. He got a bit of a chance to learn that everything dies. I refrained from singing Elton John’s The Circle of Life song from the Lion King. But, it was a “circle of life moment” for sure. Sort of strange and sad and bewildering, yet part of regular life.

A little bit after he buried them, I told him that in heaven we can be with people who have died; people that we miss, and we won’t be separated from them forever. That’s our hope and it can help us to not be as sad. He didn’t seem to be interested, and I didn’t go into it any further. This event may soon open doors for fuller dialogue about life/existence, and the ways of life and death. And I hope redemption!

His sentiment, in general, seemed properly child-like as well as very pragmatic. It will be interesting to hear how he describes the fish, and their death to his sister after we pick her up from camp soon.

Please share your comments or ideas about this.
Question for reflection or comment. How has the death of pets shaped your spiritual formation, or those of your children?

What are your suggestions for guiding others into greater spiritual maturity with this topic at hand?

OH! one more thing. Don’t miss that really interesting look at grief through the primary lens of separation anxiety, here.

(Nancy Eiesland) 'The Disabled God' -How do we define "normal"?

In reality, all of us “healthy” or “normal” people can more aptly call ourselves, “the temporarily able-bodied.”

Theologian, sociologist, and author Nancy Eiesland was wheelchair bound since childhood. She surprised many when she said she hoped to be disabled in heaven. She died at age 44 of congenital lung cancer, but not before she made huge inroads for the Rights and Dignity of the Disabled, and penned a groundbreaking book about understanding disability, and suffering, in light of God, and his nature.

22eiesland01-190 — Nancy Eiesland 1965-2009

Article excerpt on Eiesland from the “Scotsman” publication:

By the time of her death, Eiesland had come to believe God was disabled, a view she articulated in her influential 1994 book, The Disabled God: Toward a Liberatory Theology of Disability. She pointed to the scene described in Luke 24:36-39 in which the risen Jesus invites his disciples to touch his wounds.

“In presenting his impaired body to his startled friends, the resurrected Jesus is revealed as the disabled God,” she wrote. God remains a God the disabled can identify with, she argued – he is not cured and made whole; his injury is part of him, neither a divine punishment nor an opportunity for healing. FULL ARTICLE HERE