It is the meaning of life, of course (in reference to your title).
As the daughter and sibling of two people with an unknown genetic disorder that makes them short in stature (but just tall enough not to be considered as having dwarfism), I've had the opportunity to think about much of what you say above and agree that it is ridiculous for anyone to have to justify their existence because of their difference. My son may be autistic, we're trying to get an evaluation done. I believe he does "suffer" somewhat from whatever he is dealing with but it's mainly because he has difficulty making his needs and feelings known/understood by the rest of us. I don't want to cure him of autism but I do want to help him cope with others' inability to accommodate his differences. I've watched my brother and mom try to deal with that their whole lives and I know that it can be the most difficult part of having a noticeable difference.

42 is the answer! Don't know the question, though. :)

My younger brother has Down Syndrome. He is high functioning enough to know he is different, but not high functioning enough to pass for "normal", and it does hurt him. I spent much of my early years frustrated by the two responses I got when people met him or heard about him - "Oh, I'm sorry!" (I wasn't - he was my brother!) and "Oh, he must bring such joy - Downs children are so loving!" (he fit in perfectly with the rest of us - quite happy to get into it with the rest of his siblings when the situation called for it).

Normal is not something anyone can achieve. My brother would like to be closer to normal, since it would make life much easier. He wasn't sent here to teach us a lesson in caring or any of that BS. He is his own person. Every time someone says he was sent by god to teach us all how to be better people, I want to smack them. That's one reason I'm an atheist - any god who makes my brother suffer to teach other people a lesson is not one I am willing to believe in.

Sorry, you got me up on my soapbox. I'll stop now.

Normal is a social construct and it changes over time. If you look at the concept of beauty, it has changed. Brilliance was once knowing when to put seeds in the ground to miss the frost or the ability to create amazing art; these have morphed, too, and brilliance means something different. We need to be aware of people who fall outside "normal" as people. We may all end up outside of normal at some point.

Photo caption: rage, rage, against the draining of the wading pool.

I'm 42 so I guess I am the answer to life, the universe, and everything.

You're right about all of this. A life is is life and all lives should be valued according to that fundamental principle. Of course, in society, they aren't. That's why we rarely hear about the murder of a prostitute on the news but we always hear about the murder of a child or a rich person.

There is a grey area in all of this when it comes to treatment of ongoing conditions because as a society we don't simply look at the impact that a treatment might have on an individual but rather we look at the impact that treatment has on a community. In the case of a person with physical differences, whether a treatment is sought or rejected by a person should be of little or no concern to society. In the case of other conditions, such as schizophrenia, however, the needs and wants of the individual regarding treatment do need to be balanced out against the potential impact that a failure to treat would have on others. Where that line gets drawn, though, is an ethical slippery slope.

So she's short? I haven't been reading your blog that long, but does she have any other medical "conditions"? If not, then she's just short. Just don't count on the basketball scholarship. Gymnastics on the other hand...

EdT in their post talked about how not being "normal" was threatening to those who are. That's something to really think about.

Great post!

It's interesting when someone writes something and here I am practically jumping up and down screaming That's it! She gets it!
"""Do people born different in whatever way need to earn their right to live by making an extraordinary contribution? """ This is the rhetorical question that struck me to the very core of my being.
Having been raised as less than perfect and not normal, I feel that I've had to try harder to make that extraordinary contribution to society and each day I feel I fail. I've struggled my whole life trying make up for my not-normalness and finding my place in such a normal world. Complicating the matter is that I have a son who is even more not-normal which makes this struggle even harder.

(42 days until you go back to school?) What's the prize??! :D

Having a daughter who is also very small (her 18 month stats in May were 12lbs 5 oz and 26 inches long) I can appreciate where you are coming from. To me she is just my sweet daughter who is just like any other toddler, just a little smaller. Of course we are still seeing different specialists and they are now talking about a possible Russell-Silver diagnosis though I'm still not 100% convinced. Time will tell.....

melissaz - The comment about not being "normal" threatening those that are is very interesting indeed.

Sandra :o)

Life, the Universe, and Everything -- the answer to.

This gets to it exactly. From the "numbers are just that" (if you chop the ends off a bell curve - you still get a curve), to "being different doesn't mean you need to make up for it."

I'm at the other end of the curve from Frances, and by the numbers my daughter is even further off there. And while generally being tall is seen as less of a "problem," there's still the expectation that you must be *doing* something with it. Being good at basketball, for example. Lord help those of us who don't, or can't, put our differences to some good use for the rest of the world.

The answer is 42, what we don't know is the question....

:)

This — the idea that we as individuals do not have to do something extraordinary to justify our existence — is something I've believed on principal for a long time, but am finally realizing I need to internalize for myself. Thank you for this excellently written post, Andrea.

—Lou

I can always count on finding something juicy on Wednesdays, and today I found seven somethings, including this. My how the concepts weave in my mind.

I commented to Robert that sometimes "extraordinary" is simply a matter of expectations, and I commented to Ed T that expectations are a big question. Here, you sum those points up neatly, with a fancy stitch.

We don't have to meet any particular set of shifting statistics to justify our existence as we are.

I take your point about not confusing normal and not normal with right and wrong.

I think my big question was: but what if in general we would agree that this not normal needs fixing, but then, discover, something beneficial from the not normal...do we sacrifice the individual to the greater good?

I think what I did not manage to articulate until I began reading POVs is that I was really wondering when an individual is weighted more than the greater good.

I think I was wondering because, as usual, I am struggling with what my family wants of me, which is in conflict with what I want. Is my drive, are my dreams broken, and does this situation need fixing?

Of course it is always all about me. LOL

But I am so glad everyone else kept it to the broader question because it helped me reframe the whole thing, bigger and beyond me.

great post.

As you may know, the "to fix or not to fix" debate can be an extremely heated one in the autism-sphere. Part of the problem (for parents of deaf children as well, even more so I suspect) is that parents must make decisions about how aggressively to remediate well before we can really know to what extent, if any, this particular person will want to be "cured".

And it's such a delicate and risky game. The development of social awareness in autistic children can be a double-edged sword - the worst-case scenario is that the child becomes just socially aware enough to notice and suffer when he's being rejected. And there's some anecdotal evidence (including my own observation of Bub this year) to suggest that such social development can have a moderating effect on some of the academic abilities. So if I weren't prodding Bub to enter the social world, maybe he'd grow up to be a Ph.D. in math who lives happily in his little bubble, perfectly content to have no friends.

There's no way to know if I'm making the right decisions, or which decisions will ultimately be most conducive to my son's happiness. I cope with that by focusing on what I think my job is. It's not to make him happy and it's definitely not to make him normal. It has more to do with fostering his ability to live life as fully as possible in every dimension: intellectual, social, spiritual, and emotional.

Excellent post! Sorry - brain dead and late here, but you really got some neurones going - unfortunately not the ones that formulate a cohesive and thought provoking comment, just one requiring a lot of backspaces.

42 is the answer to life and the universe!

The answer to life, the universe, and everything.

Too bad we didn't find out the question.

As everyone else pointed out, 42 is the answer (and I am 42, so like Mad, I am apparently The Answer). And it's a shame we don't know the question, but hey, God apologizes for the inconvenience.

This is such a great point you make -- about the "not-normal" having to "earn" the right to exist by being better or special in some way. Screw that. Your daughter is because she is, and that should be enough for anyone.

I think that one of the most beautiful things that people who don't fall in the usual statistics teach us is specifically that we don't have to do anything special to earn the right to live. Being alive, and all of us being different, we each earned the right to live by being born. Then, we each have our own special talents and whether or not we save the world, we have our out purpose and challenges and talents that really can't be done by anyone else. No one is just like someone else. We are each our own selves.

As you pointed out, lo these many posts ago, there wouldn't even be an issue of Frances being small if the world weren't designed for a man who is 5'8", 160 lbs.

I know I'm making this all too simple and kind of about me, me, me, but thank you for reminding me that Little Man (and Frances, OF COURSE!!) doesn't need to be "fixed." I need to fix my attitude toward his struggles and accept him the way he is.

Sounds like this ties in with the theory of social currency (shorthand for the number of qualities, objects, traits, etc. that a person posesses which are valued by their society). The more social currency one posesses, the more likely they are to be valued by their society, which leads to them being treated well and gaining more social currency.

In the case of anyone that is disabled or "not normal" for whatever reason, I think there is a tendency for "normal" people, out of pity, to try to imbue the not normal one with some sort of social currency, be it cuteness, prodigy with music, etc. The thing is, someone has to have enough social currency in the first place to even elicit that response. How many of us look at panhandlers and say "I bet he is really good at chess" or "look at that smile! He sure brightens everyone's day!".

If someone's social currency level is too low, society tends to just reject them and blame them for their own lack.

It's a theory that applies to all of us, normal or not. I think that anyone who spends time with or cares about someone not-normal (whether it's that they have a disease, like my husband, or are disabled in some way) instinctively adjusts their scale of social currency and realizes that it doesn't matter as much as they thought it did.

I was just having this conversation with a friend the other day - that others feel the need to quantify (or justify) her son's differences by adding in "but he's such a great kid!" instead of "AND he's such a great kid", as if his differences automatically take him down a notch, but adding in that "BUT" it makes it better. He isn't BUT, he is most definitely AND. Frances is most definitely AND as well.

(also, for what it is worth, I have been reading, just not commenting...but think of you often!)