I grew up oblivious of disabilities and special needs. I knew there were some people with special needs or disabilities in high school, however, they were confined to one building on the campus. Our campus, in Florida, was not one building, it was comprised of several buildings. When I became a Christian at age twenty I knew nothing about God’s views on disability. I ignorantly thought in some way shape or form sin or demons must be to blame (this is true the extent by which we live in a fallen sin-induced cursed world); however, John chapter-nine, depicting a man born blind, which of course challenges the general perception of direct sin, or family sin for that matter, is a worthy depiction of the perplexity of God’s glory amidst the effects of fallen humanity. Still, I did not interact with a soul “suffering” what we as Western-society labels, disabled. I spent much of the last thirteen-years overseas working in missions and church planting-still, interaction with those who live with severe special-needs rarely if ever was experienced. Thus, for starters, much of my life has been absent of relationships with the disabled or special needs community. And, although I would say the mission’s organization I worked with, and the local church back home had a good relationship and strategy toward honoring disabled and special needs people, it lacked an actual representation to practice any such theology or methodology which centered on discipleship unto the formation of gifts and calling. In 2013, my wife, who has an autoimmune-disease, who was bedridden, and in mourning at the news that the medicine initially prescribed to her meant she could not get pregnant; wept to God. See, 2013 was the year we aimed to begin the extension of our family, it was a huge blow. However, three-months bedridden, she studied and researched. One subject, and the witnessing of a man who jogged with his adult son past our house every morning (the son had Down Syndrome), began hope and a desire to adopt a baby with Down Syndrome. I, of course, was not too excited about this prospect, considering I had not even experienced a “normal” child, I was convinced I was not ready to commit to raise a child with special needs. Long story short, believing my wife could not get pregnant due the lethality of the medicine she was taking, Keri became pregnant anyway. And guess what, Phinehas Jude Robbins was born with Down Syndrome.
Phinehas is now 6 ½ years-old. We love him and wouldn’t trade him for the world. Working in overseas mission and church planting for thirteen-years kind of meant Keri and I missed out on the whole “politically-correct” revolution. Thus, while we were not ignorant to the unacceptability of “retard” or “retarded” as acceptable language-we are unfamiliar with many respectful and disrespectful nuances of emerging, politically-correct, vernacular. And that our son has Down Syndrome, and the subsequent interaction and encouragement we find within this community, respectful language within the community has come, due this being the particular world or international community we interact with of late. And again, working overseas, isolated us in many ways from the wider community of those with special needs and/or disabilities. This in large part is due to abortion. The Muslim-majority people-group we lived amidst abort any and all babies diagnosed with disabilities or said deformities found with a baby in the womb. Even before anything could be determined which indicated Phinehas had Down Syndrome, the Doctor still encouraged us to abort.
Our second child, Silas Immanuel Robbins suffers from Pediatric acute-onset Neurological Syndrome (PANS). The disease, when his immune-system is compromised, attacks his brain, causing inflammation and psychosis. We have good months, and we have bad months. This can be set off by food, bug bites, common viruses, etc. While it is not the same, the behavioral manifestations resemble a similitude to autism. Silas is literally two different people. While he is a typical four-year old when not “flaring” (as we call it for short), there is a state of traumatic and uncontrollable OCD, separation anxiety, and an emotionally-driven controlling behavior which takes over, as a result of brain inflammation. Currently, the state of Georgia does not recognize the disease, thus insurance will not pay for a rather expensive medicine which has proven to cure the disease if received during youth. Phinehas, who again has Down Syndrome, has been infinitely easier than Silas, as for as disposition concerns. PANS took over Silas, and our family for that matter in such an extreme way, most of our co-laborers (on the field) could not tolerate visiting our house, or anywhere for that matter. And although the local hospital could treat him with the medicine he needs, and acknowledged and accepted by insurance in their country, our ministry leadership decided it was best for us to return stateside. This was crushing, and we are still in the process of healing. We have been stateside for two-years. The disease is still not recognized, and Silas’ disease has been placed in the hopes of tips from some of the amazing support groups we interact with.
We joined a local church plant initiative back home which is affected by disabilities such as autism, another family on the leadership team has a daughter with Down Syndrome, and there are several foster-children in the ranks with severe PTSD from their chaotic and traumatizing experiences (notwithstanding adults who are affected by disability and/or trauma). Most of the church is comprised of young families. It is our ambition in the days ahead, as the church grows, to steward and build an inclusive and honoring culture. Every family mentioned, regardless of experience in life and church, would agree that parenting a child with special needs is like building a ship at sea-none of us knew what to expect, and much of the advice and recommended reading offered us, offered little, and came with things needing to be unlearned. While sure, some things are different. Phinehas has many cognitive delays, however, he is a person. And though he cannot speak many words, we are sure he understands what we are saying. And this may not be apparent to the general person who sees Phinehas occasionally, however, to us, his teachers, and those who see him the most, it makes it all the more natural to honor him and treat him as a person among any other person. And while Phinehas is not cognitively able to sit still long enough to participate in some activities, or understand the rules of games, we, his teachers at school, and those among our church family seek to find ways to initiate an inclusion. Sometimes that means strapping him to a booster seat while others color so he can stop long enough to observe what’s happening, and thus become involved in coloring.
Being affected by disabilities never seemed burdensome or heavy-laden; well, until it affected our relationships. The extra time to care for, exhaustion from months of sleep-deprivation, ridiculous accusations of entitlement over our children due limitations of accessibility to us; walking on egg-shells around obviously annoyed people. These are samples of the reality which many families affected by disability face, and continue to face in a world which is unaccepting, prejudice, and/or indifferent or scared of the demanding realities existing for families affected by disability. Of course, many people do not want to admit the nature of their behavior and/or their ignorance. I was ignorant of my own perceptions of God, the church, concerning how one relates to persons with disabilities. Cognitive and physical disability or limitations stir up two primary contentions:
(1) During childhood and the majority of my twenties, whenever I came near a person affected by cognitive and/or physical disability, their limitations and physical features made me nervous. To my own ignorance and shame, when I became a Christian at age twenty, I assumed persons with Down Syndrome were of some particular demonic relationship, based on an ignorant observation of their physical-features. Thankfully, after praying on a microphone in a large room full of people, for the demons to come out of persons affected by Down Syndrome, a gentle, father-like figure approached me and calmly corrected my thinking. We are all ignorant, and unless one actually grapples with the realities of disability academically, or cares for persons with disabilities, ignorance remains. The issue of ignorance permits damaging perceptions when ignorance refuses to deal with wrong thinking. Persons with disabilities are often seen as a testament to pain, suffering, and debilitating limitations which coincide with social-weakness; a defect amidst a cycle of necessary contribution. Thus, persons affected with severe cognitive and physical disabilities isolated for a brief moment to me the reality of human-fragility. And I didn’t like.
(2) And while thinking is not isolated to theological thought alone, as a Christian it only intensified. Meaning, disability, sickness, death, and so forth, are often repudiated when a hyper-focus on cognitive and physical healing, notwithstanding discipleship and maturity, are theologically and methodologically handled by strength and success as a plumb-line for so-called fruit-bearing. If the only solution for sickness, disability, and death, in the church, is healing focused, it creates an atmosphere ripe toward social and cultural-marginalization toward the so-called anomalies of those persons which are not “healed.” The general sentiment with the healing crowd is, healing or bust. If healing does not come, typically it becomes the problem of the person who is not healed. Maybe unbelief is the issue; their faith is not strong enough. Maybe sin is the barrier; when true repentance is realized, God will heal them. This is a typical assessment formed by a theological-perception which has been formed by a success-driven, victorious-cross methodology. However, whether ignorance is the issue, or just plain inability to wrestle the Lord and His’ Word concerning sickness and suffering, if the only solution for those who remain sick, or who are not healed, if this is to place a false-burden upon persons affected by sickness and disability for the sake of your theology; you’re wrong!
Returning to John chapter-nine. What is important, without minimalizing God’s sovereignty, is the action by which Christ not only healed a man when it was deemed unlawful, Christ challenged the overbearing, marginalizing-abuse of mishandled theological truth (i.e., John 9:1-41). Meaning, there is a deception which hides like theological conviction and truth to which acts like “common-sense,” yet nevertheless, builds methodological-marginalization over and against persons affected by disability, disease and sickness, and so forth. However, Jesus sought to demonstrate a necessary mercy and compassion which did not contradict theological truth, rather, He sought to demonstrate a necessary and much needed methodology of mercy and compassion; proving, it is possible to have “right theology,” yet nevertheless persists in abusive methodological behaviors. If compassion and mercy are at the center of Jesus’ healing a person, otherwise disregarded and marginalized, one must recognize that the glory God receives here is the demonstration of His’ character and nature, and maybe not the power of the miracle within itself, which strengthens one’s belief and faith. If this is so, then Jesus demonstrates a glory of one’s compassion toward the afflicted more than whether the person is healed or not.
And if this is true, the methodological or applicational requirement is then apprehended within the gamut of Christian discipleship, and subsequently, Christian imitation of Christ. And imitation of Christ is not an inward, isolated, intellectual or personal recognition of belief which aligns one’s heart to Christ; at least not alone. The intellectually-inward spiritual-growth which develops a human-frame in the expansion of their discipleship-maturity is only as mature as its inward-development expresses itself by action and behavior. Love is not love if the fulfillment of love is isolated as an inward, individualized-expression of self and self-belief. What’s the point of believing anything if belief is stagnant, passively floating down a lazy-river with no other ambition than to feel good about oneself? The inward is the work which matures the usefulness of outward action and behavior.
If I have learned anything good, or holy, or edifying since being affected by disability, and especially in relationship God and the church, it is mostly unspoken dimension of inclusive love. I have been, for some time, on a journey to grow in imitational love and mercy of Christ. The overwhelming evidence of Christ in the New Testament is the unavoidable reality that Christ gave himself to weak, broken, marginalized people. This is not to undermine theological truth of growth and maturity-rather, if the controversy of Jesus attending to the sick, disabled, and marginalized, over and against persons and systems which thrived on convictions which justified strength and beauty at the expense of the lowly, one should consider the upside down and backwards kingdom priority of which Jesus considers strong, and that which Jesus considers weak. The American church, with all its strength, with all its money, and with all its beauty readily displayed and marketed as successful and fruitful still has no idea how to minister to persons afflicted or affected by disability, beyond serving them. And this is necessary, however, prejudice, isolation, marginalization, these are effects of exclusion. Inclusion goes beyond the service of charity, it recognizes the body of Christ’s need for all parts of the body. Inclusion plans, researches, and pioneer’s initiatives which disciple and grow formation of gifts, which open the door to apply such gifts with calling. The goal of inclusion is not simply to recognize and serve, though certainly necessary, the goal of inclusion, notwithstanding the most extreme-debilitating disabilities, where little to no cognition exists (though this is more-rare than one might think), the goal of inclusion is to be valued as a brother or sister in the family of Christ, to be valued no more or no less than the one who is not limited physically or cognitively. Inclusion necessitates using God-given strength and success as a means to include the weakest among us. Nothing less than a goal to include, even if it means changing the structure and spending money, to provide a structure for discipleship training and the maturity and use of spiritual and natural gifts, to which includes and counters the isolation of persons with disabilities.