Tuesday, March 18, 2008

“I Wouldn’t Change Her if I Could”

When can one see one of the most extreme examples of “disability pride”? Ask on a message board for parents of children with Down syndrome if they would change their kids to “normal” if they were suddenly offered a magical cure. You’d be amazed at how many answer “NO”. The reasons given are usually “That’s who she is”, “She’s our special angel”, “I’m used to her like this”, and the like.

Here I am tempted to write a swear word. It is hard for me to believe this....
First, if these parents had a child with any physical disability, like diabetes or club foot, would you believe that they wouldn’t go running to the doctor for a cure? Why? Because illness infringes on living a normal life.
I hate to say it, but so does Down syndrome. I would grab at a cure. Not for my sake, not from shame, G-d forbid. For RICKI’S sake. So that she can get married and have kids that won’t be taken away by family services. So that she can understand nuances she doesn’t catch today, that warn her of danger. So that her chances of having a decent job will be improved.
As for those who say “I’m used to her like this”, I have a simple reply. My teens changed too. They became something I wasn’t used to. I never stopped loving them, though, as a result.

(PS Added note written later: It is worthwhile top read the comments. There is a whole added analysis of the matter there.)


Anonymous said...

With all due respect, I would like to disagree with you on that. Most children (people) fulfull their mission in life by marrying, having a family, etc etc. Some children, however, have a different kind of mission to fulfull during their stay on earth, and it is fulfilled through different means. If my vision for my child (with special needs) is to find a way/ ways to make them normal, to be able to do everything that their typically-developing peers are doing, then I am shortchanging them of their own legacy. They were given the tools they need to do what they were created to do in this world. By me saying, we need to find a way to make you do what every other "normal" person is doing/ can do, I may be preventing them from doing what they were created to do. That does not mean that I should leave them be, and not provide whatever interventions are in my hands, such as therapy, special educational programs, doctors, etc. But I am pursuing those venues in a way that will allow this child to reach his/ her own potential, NOT to make him/ her into the typical child that I may have expected.
So, given the chance, --no, I would not change my son any other way. I feel that G-d is helping me to give him all the help that is in my power to give him, to help him reach his potential. He is not measured by "typical standards," because he is working towards a different goal than most.
In addition, I think that if we were to say that given the chance, we'd make everyone "normal," that is essentially saying that people's inherent value comes from being like everyone else, and being fully able to do what everyone else can do. Think about those famous individuals that were thought to be "deficient" in some way as youngsters. Think of maybe not-so-famous (yet) individuals who have disabilities. They affect people's lives in numerous ways-- and not negatively! Yes, it's harder, yes, it requires coming to terms with it, but they enrich and touch our lives immeasurably. That is part of their mission here-- to effect change in their surroundings-- family, friends, community. They are gifts, and I don't believe in gift receipts.

rickismom said...

Dear Anonymous,
No where did I say that we have to "find a way to make them normal". They are not "normal" and they are undoubtedly given by G-d in their present state a different "task".
Yet the fact is, that children (and adults) with special needs ARE normal. In almost everything but mental ability, they are normal. They have a normal desire for friends and companions. They want to be loved, and to give love. They have sexual urges. They are hurt when they do not read correctly the nuances that others catch. And, unless we lock them up in homes where they are surrounded the whole day by others with disabilities, they live in a "normal" world and have to deal with it.
Thus, in order to "protect" people with disabilities, society tends to close them away into restrictive environments, so that they will not have to deal with the real world. But they miss out on many many things as a result. Many adults with special needs are living lives that are very restrictive and confining, not because this is their choice, but because parents and educators believe, FALSELY, that this is the only way to protect them. Lack of funding contributes to this problem.
I am not worried about my child's "purpose". That is G-d's job, and not mine, as her parent.
I am worried about her ability for as full and happy a life as possible. I want that she be proud for what and who she is, and that she can do things (like helping others) that can give her self satisfaction. I want that she should behave in a way that she can be part of a community (both of disabled and non-disabled), a community where she can feel loved. If she will have the social skills for marriage, I would like her to be able to have a good and happy marriage, because few things in our lives can replace that.
My desire for my daughter to have a "normal" life is NOT because I think that a person with a disability is worth less. I just would like her to have the ability to enjoy this world as a free and full citizen. And yes, it is true that theoretically that may one day be available to the disabled, as they earn more respect from others... I hope that changing society will be an easier "cure" than curing Down syndrome.
The reality is that today I see still the recognition in peoples faces as they realize that Ricki has Down syndrome, and their immediate switch to a patronizing baby voice. As long as people will treat her as "other", allowing her to misbehave, and viewing her as "Down syndrome", she will be confined by that lack of individuality.
As for gift receipts.... I would never want to not have had Ricki. I love her, and have learned so much from that journey. (I can say the same about a child of mine who has become lax in their religious beliefs, though that is a different type of test.) I never question G-d’s gift, and value Ricki with all my heart. But if G-d lets man make a cure, I would grab it, for her sake

TUC said...

Ugh, I thought I had my mind made up about this but now you've got me worried about the future again, enough to maybe change my mind about the fantasy question. Would I?

I am still getting over the no kids, maybe no husband, possibly no typical true friends... but today it occured to me that she may never write a poem (this thought came compliments of your Wordless Wednesday post because I was thinking of how poetic Ricki's sentence "I am beautiful" was). My daughter might never be able to express herself through poetry. It was a slap in the face reminder.

So would I? I guess I'll find out the day they offer us the "cure".

rickismom said...

Actually, we do have poetry writers amoung the Down syndrome community. But you are right that it may not be. But hopefully she will beable to express herself and her feelings in a meaningfull way.

Crittle said...

Thank you so much for directing me to this post. It really is an interesting discussion we're all having!

Mike said...

Hi rickismom. I know this post is wicked old, but I do hope you're still up for a little conversation. I've been asked a number of times if I would change my son if I could, magic cure and all. My answer has and will always remain "no".

I have no profound knowledge or wisdom, but it has always been my belief that if you change a fundamental part of a person, then they become someone/something else. For me Ds is different than a cleft palate, hairlip, or some other difference that can be surgically corrected. Those things do not require the deletion of genetic material to affect change. If the trisomic cells were removed from my son in some miraculous way, my son would be destroyed and replaced by another child. I would still love him, but he would be forever different.

Perhaps it would be easier for those with Ds to function in the world at large with a "cure", but that doesn't mean it is the right approach. Because children/adults with Ds possess different abilities than "typical" individuals, it again seems like they are viewed as somehow inferior or deficient. I disagree. They are valuable and worthwhile individuals, and entertaining the notion of "fixing" them is somewhat counterproductive to that end.

To draw a parallel, would you seek a cure for Judaism? In my opinion, no single religion has been as trod upon nor any ethnic group been discriminated against for as long as the Jewish people. From the expulsion and massacre of Jews at the hands of Europeans in the Middle Ages, to the denial of equality for Jews in the United States in the late 1800's, to the Holocaust at the hands of Nazi Germany, being Jewish has been a difficult task. Would it not be easier to live without Judaism? To be cured? Times have gotten better for the Jewish community, but there is still much hatred, discrimination, and agression against your people, even in these United States. For your sake, and the sake of your children, would you accept a magical cure to make it all go away? I suspect your answer would be "no". Granted, there are no physical or mental limitations to being Jewish, but the societal implications and maltreatment of both groups have a similar history.

To look at it by the numbers, only .20% of the world's population is Jewish. Who would miss their elimination? Some countries, like Israel and the United States would notice, but the world at large would not be impacted. It's the same thing when seeking a magical cure for Down syndrome. If we extrapolate the percentage of individuals living with Ds to the world, then a full .132% have Ds (assuming that all receive equal treatment as in the US. We know this is not true, but it is merely a thought excercise to illustrate a point.) That is what you would be eliminating with a "magical" cure.

To reiterate my initial response, no, I would not change my child. If he had a condition such a cancer that could be treated, or a ventricular septal defect that could be repaired, then yes, I would take a cure. But I would no more change the genetic makeup of my angel than you would to change your "Jewishness."

I hope that my tone has been respectful, because I value differing viewpoints and respect your courage to not only have a dissenting opinion but to share it in such an open forum. It is not my job to judge you, and I hope you realize that my discourse was not designed to judge, but rather to highlight my opinions.

rickismom said...

You make a good case, and articulate it

rickismom said...

Mike, you make a powerful case,and articulate it with respect. I value your contribution.
I still view the Down syndrome as a physical effect. If a woman has the BCRA1 or BRCA2 gene for breat cancer, and they offer her a cure, will she not take it?
As for the Jewishness correlation, it seems to be a good one, yet I CHOOSE, with full implications of that knowledge, to remain Jewish and follow that belief.Why? Because I have weighed the benefits and disadvantages of that belief, and I CHOOSE to remain that way. And as much as the decision of two of my sons to ignore lasrge parts of Jewish practice distresses me (to the extreeme)(because I do NOT believe it is to their long term advantage), I do not impose on them demands to remain observant. And I continue to love them for what they are.
Ricki, as much as I try to instill in her self-awareness, and self-esteeme, is constantly "hitting the wall" of the reality of her life with Down syndrome. She would like very much to be like everyone else.IF Ricki,as an adult, after FULL explanations (and understanding)of the consequences and implications of her choice, would choose to retain her Down syndrome, I would have to respect that choice. But I doubt that she would begrudge the chance.
Also, I doubt that eliminating the extra chromosome would change Ricki's personality so much (at least right away). I do NOT see all children with Down syndrome having the same personality, and I easily see that much of Ricki's personality is due to her environment. If she would miraculously be cured (NOT likely!), I suspect that she would remain an opinioanated, touchy, and suspicious little lady for quite a while. Because I believe that 95% of her personality is not due to that extra chromosome, but due to living in a society that either fears/ demeans/ patronizes/ hides/ condems/unrates/ lumps together/ those with mental disabilities.