Art is Ben

It has been a while since I blogged. Benjamin is finishing high school tomorrow, and subsequent to this, all art from this school year came home this afternoon. 

I loved what he did in his painting class this year:

Splashes of color, some abstract, some drawing. Here is his master piece on canvas "Under the Sea":

Then there is a bit of nature:

... and some favorite cartoon characters, including ANGER from "Inside Out":

Mosaics and abstracts,

And here is the artist -

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."

...He came unto his own, and his own received him not...

"For he shall grow up before him as a tender plant, and as a root out of a dry ground: he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him." Isaiah 53:2

http://heremembersthebarren.com/2013/01/06/my-suffering-is-a-blessing-contest-winner/

These days tolerance and open-mindedness seem to be in vogue everywhere.  At least in principle.

We've all watched Bruce Jenner in his new female form as Caitlyn trying to raise awareness for his/her plight and the alienation that persons like Caitlyn feel from much the world. The ideal, as it is espoused, is that the world should view such a transformation positively and with acceptance.

Now, I am not here to discuss trans-gender issues or gender fluidity. (I have my views, but they do not belong here and now). I am here to discuss special needs.

Now, unlike transgender people, persons with special needs -- many of them -- have little control over their differences in appearance. And many people, in public, as I have mentioned before, react strongly to persons with special needs -- especially when the special needs persons have grown into the teen and adult years.... when they -- to the rest of the world -- cease to be so very cute as they were when they were toddles. 

Those of us who live with persons with special needs and have friends among persons with special needs are so used to seeing these precious people that we don't even note their differences in appearance and behavior. 

Much of the rest of the world reacts in shock when we bring our special needs children into public. I have previously mentioned that I have heard parents on playgrounds pull their kids close and tell them they won't let my son hurt them. 

This Frankenstein syndrome is alive and well (and Mary Shelley did a great job of depicting that issue in her book). 

It is perhaps by nature that we recoil when we see something unusual like twisted torsos, spastic movements, deformed faces, and missing limbs. Combine that with a bit of drooling, loud incoherent noises, a wheel chair, or a speech device, and you have  "not normal! high alert! not sure what might come from that quarter!" resounding in people's minds. Their natural inclination is to withdraw, circle the wagons, and stay in hyper vigilant mode... just in case. 
Just in case what?? 

Persons with special needs are not particularly strong or dangerous. It's a little absurd to be so scared and vigilant, especially of persons with limited mobility and limited speech. So-called 'normal' people are FAR more dangerous.  (Kind of like when C. S. Lewis commented that our fear of dead people is entirely irrational. What kind of men would be less dangerous than dead ones?)

Back to Jenner for a moment... much as I can feel for anyone who is different who struggles to get the world to accept his or her differences -- I do feel that the emphasis on persons like Jenner is misplaced. persons like Jenner do have a lot of choice about how they want to appear before the world and the level of differences they choose to display  to the world -- all while demanding that the world accepts them as they choose to appear. (Conchita Wurst comes to mind here. A lot of CHOOSING to shock in places where Conchita KNOWS people will be shocked. There is an element of volition here on the part of Conchita.)

Persons with special needs do not have much of a choice in how they look. They are not out to shock anyone. What they are is what they are. And in a lot of ways  I feel that to revolt in horror at a handicapped person the way you may revolt if you do not like the looks of Conchita is a gross unjustice to the handicapped person!! (Not that your reaction to Conchita is necessarily 'mature' or well thought through either, but at least Conchita aimed to shock and if you bit the bait, you responded as expected). 

In contrast, these precious men and women who are born with these 'physical and mental differences' who do not fit the expectations of our  youthful beauty focused culture are treated with gross injustice when we do not check our reactions to them. They may not come across as the epitome of strength, flawless features, and genetic perfection. Many men and women with special needs display unusual body movements -- my son's head is always tilted to the left, he stutters and speaks incomprehensibly, and he drags his right leg because it is too long. He has an enormous underbite, and he makes odd noises, often at times when others would consider noise making inappropriate.  

Now, where am I going with this and why does it matter? It matters because how you receive these persons affects how they view themselves --- it affects their self esteem and long term, it may be part of determining whether they suffer depression in their adult years. 

My son in particular has a speech delay/difficulty which largely isolates him in terms of communication and in terms of being able to relate to people socially. This difference and the isolation that has come with it has caused him to develop autistic like behaviors in order to cope with the isolation, the difficulty in breaking through to communicate with others, and the difficulty in feeling part of any one group. His autistic like tendencies are not any ONE or HUNDRED persons' fault at all. I lay it at the feet of nobody, but I do just want to put it out there as part of who he is because of how he has been received in the world in general. Adolescence and not being so cute any more has been a super hard pill to swallow for him. I am not sure it has gone all the way down to be digested yet.

And frankly, I would 'fault' if I may, Down Syndrome organizations for some of this. When they feature persons with Down's on magazines or as poster children, it's the girl with Down's who became a model, or the girl with Down's who was part of the cheerleading team. It is almost always those persons with handicaps who most conforms to our society's worship of beauty and accomplishment. It is not the average, slightly overweight girl with Down's or a boy like mine with several facial and midline major asymmetries that get picked for the pamphlet or poster. The mantra is usually 'just like us', and then we smear a goodly layer of make up on the girl and say, look how pretty she can be. The mantra is rarely, this is what he or she looks like. THIS is humanity!! This is a person. We love persons, and therefore we love this human being as well. 

Many with special needs feel isolated and not included --- if they don't fall in the category of 'cute' or attractive. Or if they don't fall in the category of persons with good social and communicative skills. These persons have difficulty building social bonds with anyone but their care givers because they get so little opportunity to be included in the main stream of society, even at the most rudimentary level.  

And so, WHEN I see the Bruce Jenners of the world trying to be accepted 'for who they feel that they need to be' (or however that needs to be put to reflect their intentions most accurately), I confess, my thoughts go to people much more in need of support, in need of acceptance, in need of being loved at first sight for who they really are -- namely those who cannot fend for themselves, those who in spite of costly surgeries (I lost count of the number we have done on Ben's face alone) look a bit 'different', and whose only chance of inclusion is a friendly smile, a pad on the back, a "hello, how are you?", a "come swing with us, there is room" from the general public. 

I wish MORE energies would go in the direction of trying to remedy this social ill.
(And I thank my daughter Kirsten for the initial thoughts that went into starting this blog.)