adj \(ˌ)kō-ˈmȯr-bəd\ : existing simultaneously with and usually independently of another medical condition
First Known Use: 1981
Today’s post is sure to anger more than a few of you, but exposing the truth often has that effect on people. There can be a certain toxicity right in our midst, and if we don’t get it dealt with, it’s sure to bring us harm.
A couple of weeks ago, a colleague and I were running an errand to pick up some equipment for an event we were running. As we drove the rural route to the rental shop, plenty of time was open for conversation. As we discussed the families we are honored to serve, the query arose as to why certain diagnostic groups of patients segregate themselves from those of another diagnosis. Most notable (perhaps because they have a larger population), is the autism community. And then there are the sub-groups within that diagnosis. There’s the Autism Speaks crowd, and the Autism Speaks Doesn’t Speak For Me crowd. There are the anti-vaxers and the hyperbaric chamber crowds. Sadly, these families may avoid fraternizing with other special needs families facing another diagnosis, while still struggling between themselves.
This is not unique to the autism community. I have seen plenty of the same in the hemophilia community, of which my family is a part. My colleague and I had even discussed an area summer camp that wants to deny admission to any children who do not have a physical or medically fragile diagnosis. This will regrettably alienate the myriad children with invisible disabilities.
In our conversation, I shared my concerns about such an approach on the part of any of us in Christian disability leadership. Now, to be sure, each of us may have a core competency in a different area. However, each of us has more in common than we realize. No matter what the diagnosis, those of us facing any type of disability find ourselves at doctor’s appointments more frequently; we face greater financial strain as we are challenged with a larger portion of our income going to medical bills; we wrestle with school issues more than the average family; we often find ourselves having to deal with insurance companies at a more stressful level. And this is just to name a few!
We each find ourselves ostracized enough by the “typical” world that we don’t need to be fighting against each other as well. As a larger collective, we are far better equipped to understand the challenges at hand. And we can accomplish far more as a united group than we can by being dismissive of those who are not identical to us.
Perhaps this division came to be because so many of us thought we were fighting for the same resources, wider recognition and volunteers. Or perhaps all of this arose because we didn’t want to share all of our hard work with others who didn’t pay the same heavy price we did. Whatever the origin, we need to get past this to make a larger impact for Christ within the disability community.
It is also completely foolhardy in that so many, if not most, of those who are diagnosed with a special need have comorbid conditions. My son has hemophilia, but he also battles anxiety, PTSD, and GI issues. My daughter has severe allergies to every antibiotic drug out there. She’s also allergic to every ADHD drug we have tried on her. Being unable to use such prescribed aids makes it that much harder to manage her severe ADHD, SPD and social deficits. Oh, and have I mentioned her asthma? Few, if any, of the parents I find myself working with have a child with only one diagnosis.
If that is the case, then how do we justify segregating ourselves from others of another diagnosis in the special needs community at all? How do we provide help for only those with Down Syndrome when they may also be facing the difficulties of leukemia or autism? How do we only allow the kids with CP at our camp when they may also have a seizure disorder? How do we say we’re only going to serve kids with mental health issues when there may be an underlying medical cause?
Our comorbidity is merely one obvious reason we should have unity of purpose in both celebrating and serving the wider special needs population. Greater reason still lays in Jesus’ own words, “…that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me.” (John 17:21, NIV) If we live and serve as a continually divided community, how will we adequately reflect our glorious God to a dark world? Far better instead to love on each of God’s children within the disability arena to the best of our ability.
What are YOUR thoughts on this topic? How does your ministry deal with this challenge? We would love to hear!