Merry Christmas

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."
Isaiah 53:2 

It goes, perhaps, without saying that the special needs community (persons with special needs, their families, friends, and service providers) is as diverse as the rest of the world, and as such, the views on how to include, what to include, where to include, etc are as varied as the number of people in the community. 

But it is not just our political, cultural, and religious backgrounds that cause us to differ in our approaches to inclusion, it also has a  lot to do with what sorts of special needs we are dealing with.

My son Ben has Down Syndrome plus. (My nomenclature, offered without apology). His cleft lip and palate, severe heard defect along with various co-morbidities that accompany such physical diagnoses, affect his abilities to hear and to speak. His speech and hearing have over time isolated him enough from even the typical peer interactions that more healthy youths with Down syndrome are able to enjoy, that he has acquired the additional label of Obsessive Compulsive Disorder.

Now, all this to explain where I fall on the special needs spectrum in terms of how my approach to disabilities came about.

I do not have one of those "YOU CAN DO IT IN SPITE OF DOWN's" sons. My son will not lose 60 lbs and suddenly become a handsome body builder with Down's. He will not, through my "Asian mom-style" teaching suddenly become the only kid with Down's in his high school to pass a non-modified consumer math class. Nor will he take a small speaking part in the school play to "prove" that he is really just like the rest of the kids in high school.

It may feel good and natural for parents with extraordinarily talented Trisomy 21 kids to have their daughter with Down's be a cheerleader, or have a son sing the national anthem at a big sports event. I am not discounting the pleasure of such an exhibit (for the disabled person, his or her family, and his or her friends). Some may even find such feats inspiring, and if so... why not enjoy the inspiration?

For me, however, and perhaps, also, for others who are dealing with a more severe and complicated battery of challenges, this 'just like us' mentality, which is demonstrated by getting one exceptional person with Down's to do or act the way typical peers act, is not only discouraging, it is out of reach. 

Not only is it out of reach, the 'just like us' mentality can also, without meaning to, devalue persons with disabilities who will never achieve such a 'just like us' moment. The humanity of a person with special needs cannot/should not be measured by (parent, school, services)'s therapeutic abilities to support a disabled person to perform at near-typical levels in one isolated splinter skill. Not only does such an achievement not 'typicalize' the person with disabilities, over-valuing narrow therapeutic foci runs the danger of only valuing persons with disabilities when they overcome a deficit. It also runs the danger of devaluing other persons with the same disabilities who cannot attain that one splinter skill at the same levels of performance. 

My humanity cannot, indeed should not, be evaluated based on the skills sets I have been fortunate enough to acquire, given my physical, emotional, intellectual, and spiritual gifts in life. Any one of my gifts can be 'snuffed' out in a moment of misfortune, no matter how gifted I might have been at birth and on.

My humanity, your humanity, the humanity of all persons, including those who -- to a greater degree than most of us-- struggle with physical, intellectual, developmental, and emotional challenges lie in their being born human. Our respect for the value of all human lives must begin and end there, regardless of whether they can walk or talk, regardless of whether they can regulate their emotions, count to 100, or feed themselves.  

Life matters, and yes, we all matter, but some of us are more at risk for not mattering, namely those who have been mistreated, misunderstood, ignored, and devalued. 

He came to us as a little child, humble and helpless. There was 'no room' for him at the Inn. He was not valued, welcomed, or noticed.... because ....

"He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him."