Stereotypes

Ok, so I have pondered a lot about stereotypes and Down syndrome and how hard it is not to be trapped in those stereotypes.

I remember a few years back standing in line to get into the Denver Zoo. My son Ben (who happens to have Down syndrome) was standing next to me. He was probably 11 or so. In front of us was a lady with two kids somewhere between the ages of 3 and 5. The 5 year old boy kept staring at my son (probably because of his repaired cleft lip, but possibly also because kids with Down's look different). Eventually the boy moved back towards his mom, who sheltered him with her arms and said, "Don't worry; I won't let him hurt you".

Another event... one neighbor, when Ben was first born and we knew he had Down's sought to comfort me with the fact that to her, Ben didn't look like he had Down syndrome at all... as if 'looking or not looking' like Down's would matter.

Another scenario, Ben was born with cleft lip and palate, and because of his heart condition (a typical Down Syndrome heart), his cleft lip could not repaired surgically till he was about 2, whereas most infants with cleft lip get it repaired within the first two months of life. During Ben's first year, at one point, we were at the library with him in his car seat inside the stroller. He was quite a sight because he had his cleft lip (a unilateral cleft on the left side, going all the way into the nostril) as well as a feeding tube coming out his other nostril, and tape to keep his feeding tube in place. (He was wont to pull it out otherwise). Well, this lady came running up with a smile, "I gotta see the baby! I gotta see the baby!" and then when she got up to the car seat and peeked in, she turned to me and grimaced, "oooh!! What's wrong with him?" 

An elderly family member was so nervous she cracked an ugly baby joke when she first met him. 

But beyond appearances, I have also run into out and out stereotypes, in particular in the dental field, that we won't take your son as a patient because patients with Down syndrome bite. This from both orthodontists and regular dentists. I understand the stereotype. If their experience is that this is the case for the most part, and somehow they don't relish being bitten, naturally they prefer not to deal with patients who have Down's. However, in the particular case of my son, he is extremely cooperative in the dental chair, more so than most typical kids, and he does not bite. In fact, he LOVES having his teeth cleaned... LOVES IT!!! And when a dentist finally concedes to take him as a patient (this has been an issue), the comment usually is, WOW, he is more cooperative than some of my adult patients.

But my point is not to catalogue wrongs. Many of these incidents are actually funny when I reflect back, like one little girl in public who saw Ben in a park in his stroller, ran back to her mother, whispered and pointed , and then the mother pretended to casually stroll by us to sneak a peek, as if she didn't at all mean to look.  There are many silly stories like that.

As I said, this is not a litany of complaints. It's more of an illustration of how some people respond to a situation where they do not know what to do or say, or where people react to my son with their own prejudices on the forefront, rather than reacting to my son as a human being who may or may not fit their stereo typical expectations.

A relative of mine years ago described how he and his wife were visiting some historic site and a school bus of mentally handicapped teens showed up at the site and swarmed all over it. At the time, this particular relative expressed that they felt awkward with all the handicapped children around, not because they objected to them, but because they did not in any way know how to relate to some of these students and their unusual behaviors.

His story came before Ben's birth, but it always struck me as the most honest of reactions. He was not equipped by education, experience, or even the common sense to know what to do or say, and in his case, he did nothing. 

Most people DO something. They either react nervously, or they act out of curiosity. Their emotional apparatus seems to require some outlet of whatever emotional energy is pent up, and interestingly enough, it is up to those of us who have the children with special needs to normalize the situation by including the confused or emotionally upset, or curious by stander in the life of our children in such a way that our children do not suffer or feel stigmatized by the encounter.

The few times in public (and it happens to this day) where someone, adult or child, asks me "What's wrong with him?" I always say, "There is nothing wrong with him. This is Ben, and I am Lene. What's your name?"

When he was little in a stroller, I always made a point of saying hello to people who clandestinely sneaked a peek... this was for the sake of my three other kids who were 6, 3, and 18 months old. 

In fact, my daughter tells me that I so normalized Ben and Ben's condition to her that she was near  10 before she realized that he was 'different' in a lot of respects. (I did not mean to do that in the sense that I was always open about the issues we faced with Ben, but growing up with him, she just assumed that that was normal.)

To round this out... I think it's difficult to meet people who are different on their own terms. And I think it's more difficult with people who have special needs. And I think it's more difficult the older kids with Down's get. Four year olds are adorable... and four year olds with Down's no less.

When a person gets into his or her teens and is approaching adulthood, there is a pseudo-sexual switch that takes place, and we as humans start evaluating people on good looking or not good looking, and to some extent that subconsciously involves greater or lesser degrees of sexual attraction.

Young persons with disabilities are human beings and therefore sexual just like any other human being. But one major hurdle that our society suffers from is that it has no conceptual apparatus for dealing with sexuality in adolescents and adults who are mentally handicapped. We have no framework to put it in, it falls outside our own experience of attraction, because it involves persons with mental ages more so approximating that of children. And so while it is difficult conceptually to learn to engage children with mental handicaps at any age, it gets harder as they grow, and as a result we often blunder or emote when encountering such individuals.

I shall expand on this another day, I have a conference tomorrow to go to and a son to put to bed.

:)