All God’s Children, Part 2: Definition of Disability

All God’s Children, Part 2: Definition of Disability

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As the parent of special needs children, church was often a challenge for us.  While most   of our time was spent serving smaller military chapels, a trip to a parish usually promised to be stressful – as my husband was serving in the altar and there were 5 children to tend to.   With children on the autism spectrum, sometimes they were just in perpetual motion  – much to the dismay of some parishioners around us.

The following is a serialized version of a paper I wrote for my M.A. in Religious Education at Fordham University:  Embracing All God’s Children:  Orthodox Theology Concerning Disability and Its  Implications for Ministry with Special Needs Youth in the Orthodox Church.  The full paper can be found online: fordham.academia.edu/WendyCwiklinski

 

Part 2: Definition of Disability

 

A result from an internet search for “disability icon” is the image of a wheelchair, which has become the universal icon for disability.  It is used on signs for designated parking, signs to indicate accessible restrooms, and accessible ramps.  The concluding section of the 2009 Official Statement of the Standing Conference of the Canonical Orthodox Bishops in the Americas (SCOBA) on disability seems to specifically define the perspective of the Bishops – restricting disability to “those using canes, walkers, wheelchairs or service dogs.”  Examples of accommodations made for the disabled include “providing curb cuts, adequate ramps, sufficient handicapped parking, wide doors and aisles to accommodate wheelchairs.”

While laws in the United States have mandated access, especially for those with physical handicaps, there are other situations where people with invisible disabilities are denied access:  an autistic child with vocal tics asked to leave church, a bipolar child with behavioral issues denied attendance at Church School, or a child with Asperger’s Syndrome who is not included in youth group activities.  What is an invisible disability?  One advocacy group defines it as:

“Symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.”

How can our churches understand that these invisible disabilities are also present among those in our midst, and are just as real as those conditions that require some sort of physical accommodation (i.e. wheelchair ramps, speakers for those with hearing issues, etc.)?

Some Orthodox communities have incorporated an “Inclusion Awareness Day” into their calendars, with lesson plans and activities for Sunday school and involvement for teens.  In addition to this, some churches also have “Inclusion” liturgies on Saturdays once a month for those who have difficulty making it through a “regular” church service.  As society struggles with the concept of Inclusion in regular education, so too are our churches struggling with this concept.  Children with special needs come to church with two strikes against them:  (1) they are a child, and (2) their particular challenge may not have visible signs like crutches or a wheelchair would, leading those around them to make judgments and even ask the family to leave because they are “disturbing the worship of others.”  When asked about the irony of a separate Inclusion Liturgy, Dr. Anton Vrame said:

a) the families of special needs kids feel more comfortable in these liturgies at the beginning because they’ve been “in exile” from the parish for some time (usually self-imposed) because their child “makes strange noises” or “walks very strangely” and all that; b) it creates a community of the special needs families — they begin to come together and know one another, etc.; c) in some cases the needs are so severe that coming to church on a Sunday poses lots of challenges anyway, so the special time works. In time, though, this is raising awareness for the parish and changing attitudes (and we have to be honest that many people have stigmatized those with special needs). So, while being included in the parish all the time would be the ideal situation, we have to recognize where people are on this. Even schools not too long ago separated the special needs child from the rest of the community. Now we include them.

The Orthodox Church’s teachings are based on Scripture as well as Tradition.  It is important to explore those roots, and use the findings to apply them to the restoration of a more inclusive community.

The Blessing of Children

In the writings of both the Old and New Testaments, children are seen God’s gift to us.  The Prophet David writes in the Book of Psalms, that our children are an inheritance from the Lord, a reward:

Lo, sons are a heritage from the Lord,

The fruit of the womb a reward.

Like arrows in the hand of a warrior are the sons of one’s youth

Happy is the man who has his quiver full of them!

He shall not be put to shame when he speaks with his enemies in the gate.

(Psalm 127.3-5)

His next Psalm also depicts children as blessings:

Blessed is everyone who fears the Lord, who walks in His ways

You shall eat the fruit of the labor of your hands;

You shall be happy and it shall be well with you.

Your wife shall be like a fruitful vine within your house,

Your children will be like olive shoots around your table.

Lo, thus shall the man be blessed who fears the Lord.  (Psalm 128.1-4)

In the New Testament, Matthew illustrates Christ’s loving, inclusive attitude towards children by not keeping them at a distance, but drawing them close to Him:

Then they brought little children to Him, that He might touch them; but the disciples rebuked those who brought them.  But when Jesus saw it, He was greatly displeased and said to them, “Let the little children come to Me, and do not forbid them; for of such is the kingdom of God.  Assuredly, I say to you, whoever does not receive the kingdom of God as a little child will by no means enter it.”      (Mark 10:13-15)

The Epistle of I John talks of the loving gesture of the Father that has us called children of God:

Behold what manner of love the Father has bestowed on us, that we should be called children of god! Therefore the world does not know us, because it did not know Him

Beloved, now we are children of God and it has not yet been revealed what we shall be, but we know that when He is revealed, we shall be like Him, for we shall see Him as He is. (1 John 3.1-2)

St. John Chrysostom preaches that children are a “great charge committed to us” and exhorts us to take care of our children’s souls:

Let us bestow great care upon them, and do everything that the Evil One may not rob us of them. But now our practice is the reverse of this. We take all care indeed to have our farm in good order, and to commit it to faithful manager, we look out for it an ass-driver, and muleteer, and bailiff, and a clever accountant. But we do not look out for what is much more important, for a person to whom we may commit our son as the guardian of his morals, though this is a possession much more valuable than all others. It is for him indeed that we take such care of our estate. We take care of our possessions for our children, but of the children themselves we take no care at all. Form the soul of thy son aright, and all the rest will be added hereafter. –Homilies on 1 Timothy, Homily 9.

Despite these writings, children in church are still a very controversial subject, especially for those of us living in the United States. The surrounding American culture is still subtly ingrained with the maxims “Children should be seen and not heard” or “Spare the rod, spoil the child,” so that having young children in church can be a source of great tension among parishioners.  However, one can find several articles that justify having children in church, especially since Orthodox children are fully regarded as communing members from the time they are baptized and chrismated as infants.  Consider these two signs in two different Orthodox churches in the US:

  1. Parents!  Watch your children!  If they misbehave, please remove them so others may pray!  (from a large parish on the east coast)
  2. Parents!  Watch out for your children!  Bring them to Church so they may learn to lead holy lives!  (from a small parish in remote Alaska)

Both ask the parents to watch their children, but the messages are clearly diametrically opposed.  Either children are welcome, as the scripture and patristic writings tell us, or they aren’t.  Do we create a hospitable environment for our children, not only those who are neurotypical, but especially for those who have special needs?

This tension can be vividly observed in parents of toddlers in church, who are challenged with keeping themselves and their child in church, yet not “offending” other parishioners through their child’s behavior.  The services can be long, full of music and movement, and may occur during usual naptimes.  Once the child gets older, expectations of “appropriate” behavior increase.  With the movement and music that occur during an Orthodox service, it is not always necessary for a child to be quiet and still.  The expectation of “quiet and still” is opposite of the Orthodox experience overseas, where churches are full of people moving around, in and out of the church.  While church attendance can be demanding even with a “neurotypical” or “normal” child, the challenge is even greater with a child who has physical or neurological issues.  As previously stated, many children with neurological (as well as some physical challenges) might not have outward signs, other than a behavioral manifestation.  For example, a child with Down syndrome has outward physical signs — the appearance of their eyes, speech impediment, marked walking gait — that identify their particular challenge  Compare this to a child with Asperger’s, who may only show their challenge through awkward social behavior.  The chronological age of the child, reflected in their physical maturity, can mask the immaturity that comes with invisible disabilities, especially those that are brain-based like Autism or bipolar disorder.  The lack of some outward sign that a child is not neurotypical can make it difficult for those around them to understand the context of the behavior, when in fact it may be a symptom of their particular disability, rather than just bad behavior.  This can lead those around them to make the quick judgment that it’s just another “bratty” child, because the disability is masked.

Sometimes the church building itself can be a hindrance to easy worship.  One parent observed that their child was much better in a smaller church, one that had no pews – that when they visited a larger, “more perfect” church, the expectations of acceptable behavior seemed to become “more perfect” as well.  Churches with pews make it hard for a child who may need to have movement in order to “attend”.

Because Church can be an inhospitable place, attending often becomes the last thing that many parents of special needs children want to experience:  especially if it means dealing with the stares, the comments, the unsolicited advice, or being quarantined from the community in the crying room. This puts both the child and their family in isolation from the community.  Though it does not exclude them from partaking of the Body and Blood of Christ, it does exclude them from the Body of Christ – the Church itself.  Thomas Reynolds notes that “Despite being loved into being by God, people with disabilities are excluded or trivialized as social nonentities in ways that mar their sense of being created in the image of God.”  By this intentional exclusion, perhaps the community deprives itself of a necessary part of the Church.  Fr. John Chryssavgis writes:

It is in them that we discover models of spirituality and ways of salvation.  They can show us what true humanity is in this world—far from perfect and yet fully and totally loved by God.  The reality of disability, like the Cross itself, must serve as a critique of our illusions and ambitions.

In the closing section of the Official Statement on Disability and Communion in 2009, SCOBA concludes that:

No one should be excluded from the manifold aspects of the church’s education (whether children, adults, or the elderly) or the community’s pastoral ministry (such as visitations and fellowship). There should also be provision in our seminaries for training and informing future clergy regarding aspects of inclusion for people with disabilities. Responding to issues of disability reflects the willingness to respond to the vulnerability of life itself. An inclusive paradigm of ministry is a crucial step in dispelling misconceptions and assumptions regarding disability, while rendering all areas of parish life accessible and possible to persons with disabilities.

With the increasing numbers of American children who are identified with special needs, what are our churches doing to make their communities welcoming to these children and their families?  Do the Churches, the clergy and its leaders even know that this is an issue?  Or its magnitude?

Footnotes:

1. (Invisible Disabilities Association)

2. (Church)(Church) (Church)

3. (Vrame)

4. This psalm is read as part of the Second Antiphon of the PreSanctified Liturgy, celebrated on Wednesdays and Fridays during Lent.

5. (Reynolds 188)

6. (Chryssavgis 44)

7. (SCOBA, Pastoral Letter: Disability and Communion)

Appendices:

Autism Statistics

10 Important Points from Recent CDC Findings

Mental Health Statistics 

Developmental Assets


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Matushka Wendy Cwiklinski

Matushka Wendy Cwiklinski has Bachelor’s degree in Instrumental Music Education from Northeast Louisiana University. She studied at St. Vladimir’s Seminary and recently graduated from Fordham University with a M.A. in Religious Education, with an emphasis in Youth and Young Adult Ministry. She is married to Fr. Jerome Cwiklinski, who recently retired from serving as a Navy Chaplain. They are the proud parents of 5 children, who have explored the country during their military moves, living in California, Chicago, Washington DC, Alaska, and Rhode Island. Their last move to Southern California has lasted for 15 years!