What if Umar didn't have Down Syndrome?

I get this question from the kids a lot, mostly it is Hannah but they are all curious of the answer. And my reply is simple "Then he wouldn't be Umar". Now I'm sure some will object that one isn't their disability, disease, or condition and this is true. Umar is not Down Syndrome Umar is Umar who happens to have Down Syndrome. But there is no denying that ones disability, disease, or condition does impact who a person becomes.

The argument of others tends to be that Down Syndrome no more affects a persons personality than say blindness or deafness does and to that I differ. Down Syndrome unlike say blindness is a chromosomal condition in which every or most cells are affected in a persons body. Which accounts for their physical appearance, possible physical conditions such as heart defects, low muscle tone, the way their bodies are shaped (ie pallet and the like) as well as brain cells affecting their intelligence as well as personality traits. This doesn't hold true for blindness or deafness so I think it is completely ignorance of what DS truly is for one to actually make that comparison like so many do on various opinion pieces in regards to this issue.

But on the other hand one would also have to factor in how does one condition affect who they are and this holds true for a person who is deaf or blind. Their life experiences are so much different than if they didn't have such conditions. How others interact with them, how the interact with the world, how their very own families treated them considering their conditions and other day to day interactions that all impact who we are as an individual personality. To deny this fact is to deny that any varying influences in our lives impact who each of us are as individuals even with disabilities discarded.

So for Umar not only does he have the impact on his person in regards to how we as a family interact with him, treat him, what we introduce into his life due to his DS, what he experiences and how he comprehends these experiences and thus affecting his out put of such experiences but he also has Down Syndrome which simply put impacts who he IS though he is not just his DS. If he were to not have Down Syndrome he wouldn't be who he is nor would he grow to be who he is going to be. Not only would he have much different experiences within our home and outside of it from society, but he would also lack the very extra chromosome that impacts who he is.

I don't think many get this when they discuss the hypothetical question if one would "cure" a person of Down Syndrome. Which is why so many simply don't understand the comments of Jenn Power but as a mother to Umar I so get it and can understand. Now this is not to say that I a mother to Umar would not seek medical intervention to help with his cognition for I believe I would. I wouldn't seek for him to be a lab rat for untested medications that may affect him negatively. But yes I would seek intervention to help him with cognition, the same as I took him to physical therapy or speech therapy and how many families turn to vitamins and mineral supplements in the hopes of achieving the same goal as Dr. Salehi describes.

One thing that really scares me when it comes to Umar's life is that he will have some form of dementia or Alzheimer's. I fear that and how that would impact not only his life but also the lives of my other children. I don't think this fear is unwarranted or my desire to prevent that is somehow an offence to who Umar is as an individual who has Down Syndrome. I don't think any parent or care giver of a person with Down Syndrome would turn away preventing such things from happening to those we love.

Now would such treatment run the risk of loosing my Umar as I know him? Well let us be really clear here which unfortunately much of the web is not (here and here for example) this is not a cure to Down Syndrome. I know big shock to some who actually equate a treatment for an individuals cognition as a treatment to their extra chromosome in all or most of their cells. But to what degree would such a treatment have on the Umar as is his personality and essentially who he is as a human being? This is a bigger question that of course has yet to be answered and understandably would be on the minds of many parents or care givers of one who has DS.

Many critics take such a hesitant answer to the hypothetical question if I would cure Umar's Down Syndrome as selfish. One of the recurring objections is that to the question of his future independence, or lack there of. I've found this thinking in regards to the 'burden' of an individual with Down Syndrome may place on their families as parents age a whole lot. And to be quite honest I find the notion a bit disturbing especially the manner in which it is presented as an opposing voice. And I think much of my concern over this view is that the notion of dependence is something wrong, lessor than, or abnormal. And quite frankly it leads to some severely selfish and arrogant tones by nay sayers.

I've mentioned before that I as an individual have never once questioned or concerned myself over what will happen to Umar if both me and Mr. Man pass away. I don't view family interdependence as a bad thing or something to be shunned. We are a family after all part of the larger human race in which we all in some way or another are dependent on another. Not one of us are self sufficient without need of another. So to assume that Umar is in some way lessor than because he may live with a sibling (or a sibling live with him as Umar will be a home owner regardless) or some great burden is colored with very selfish glasses. It is one prevalent cultural teaching that I detest in the US and that is independence to the degree of selfishness and a state of being cold hearted.

This concept of independence is one that I have noticed growing among Americans. We are so involved with the idea of 'independence' we do so at a very selfish cost. And I say we only as an American not that I believe, interact, or live in the manner that most Americans do when it comes to this issue. Dependence is not a bad thing and independence shouldn't be sought at the cost of others or your own empathy as a human being. I think of my father as I write this, stuck living with a son who seeks out only his desires not wanting to be 'burdened' with an aging parent. One would rather seek strangers to care for a family member than rather have their own lives interrupted in what they seek to do for the desire to be happy or achieve some goal they set with only their wants and needs in mind.

I've raised my children in a home with extended family each member living with dignity and respect. Not one is seen as a burden or a hassle for each is a family member an extension of ourselves in one form or another. We have a duty and obligation as honorable human beings to care for those who are of us and even those not of us. My children understand that it isn't all about them, that their needs are on the list of a rather large household and that no they can't always get what they want and it certainly won't be at the cost of another.

I would have thought this is something that all parents do but some way down the road of parenthood for many Americans this basic concept gets lost or distorted in some way and the desires of an individual is put over that of others. I have never seen a parent teach a child to go grab a toy from another child because they want it. We teach as parents to share, play well together, take turns, help out others, and behave in a way that shows respect and concern for your fellow playground playmates. Yet in the larger playground of life the attitude of ME, MYSELF, and I is taught and all that was good is lost.

The teaching of a larger family that includes sacrifice, interdependence, and giving to the others one that we teach. I teach it as a Muslim who believes in the interdependence of the human race as laid out within the teachings of Islam. I teach it as a parent of several children. I teach it as a daughter of a parent who lived with us and a parent who may become dependent upon me once again. Mr. Man teaches it as a core to his upbringing within a culture that is often labeled as barbaric yet has the ultimate ability to have a more collective thinking than individualistic.

Another common objection amongst those who don't understand the hesitation of parents to cure Down Syndrome is that of the idea of perfection. I've been over the fact that 90% of children with Down Syndrome are aborted due to the idea of wanting only a perfect child. I've written before about my issues with the concept of eugenics and how often it is passed on today. It comes down to one holding certain ideas as to what is valuable to a human being and how someone must be in order to add value to society.

The more one tosses around the higher righteous idea of individuals with Down Syndrome being less than in view of the greater part of humanity there are certain things I've asked myself. How many individuals with Down Syndrome do we see committing crimes? Stealing? Raping others? Killing others? And a long list of other ills that plague our societies. Individuals with Down Syndrome happen to be some of the most welcoming individuals, non judgemental, giving and simplistic when it comes to the world (and that isn't a bad thing). Yet so many suggest that there is a preference for "normal" whatever that is which also brings about some of the most vile wrongs on this planet. So tell me again how perfect normal is? How achieving higher IQs is something better for the world?

Considering that it is no surprise that many parents aren't so ready to seek out a cure for Down Syndrome?






*Thank You Dandoon for sending me this article which caused this entry