I don't pretend to be an expert on the subject of dwarfism and skeletal dysplasias. I've just been thinking about this subject for a while. I'm part of a yahoo group called "Parents of Little People" and these issues are some that they have recently been talking about. I'm not even yet a parent of a little person so obviously my experience is pretty limited but since I've been thinking about it, I figured why not write about it?
Many parents of little people seem to take offense to comments like "What's wrong with your child?" or "isn't it sad that he has that disease" etc. They say that their child is perfect the way they are and that instead of wanting to change the child, more effort needs to be focused into changing society to be accepting towards people who are different. There are things like extended limb lengthening surgery that can add up to a foot onto a person's height and while some people with dwarfism are pursuing the surgery as an option to help them become more "average height", most of the dwarfism community seems to be quite anti-surgery as the costs, risks and pain of the surgery are high and they can outweigh the benefits.
Back to the original topic though, is dwarfism a disease, disability or just a difference? I kind of think that in some ways it's all three, depending on what aspect that you're looking at.
A disease is anything in the body that doesn't function "normally". And ultimately, all forms of dwarfism are that. In proportional dwarfism, the pituitary gland doesn't release enough growth hormone which results in stunted growth. In other forms of dwarfism, there are other mutations etc that lead to the bones growing abnormally. Pretty much all forms of dwarfism come with their share of serious health risks, from things like hydrocephalus to sleep apnea, mobility problems and severe curvatures of the spine. I feel that "disease" deals a bit more with the physical aspect of a condition whereas "disability" describes more the social aspect of a condition (I don't know if that's really correct, or just my personal interpretation of it) and I do know that some people with dwarfism have very few serious health concerns associated with their condition - so I can understand why they may shy away from the term "disease" when physically they can function as well as someone without dwarfism. But I do think that in general, these conditions ARE diseases in the strictest sense of the word. I hope and pray that our daughter has as few health complications from her conditions as possible though!
Is dwarfism a disability? Again some people with dwarfism who can function as well as others without dwarfism do not like to be considered "disabled". Probably no one likes to be considered "disabled" though - but in reality, there are aspects of dwarfism that do fit the definition of disability. Their physical condition can impede their physical ability to do certain things since the world is set up for people who are a foot or two taller than them. On the simplest level, they may need a stepladder to do things that 95% of the population can do standing on their feet. They can drive, but the car needs to be adapted to them with extension pedals etc. The sad thing about the issue is though, many times someone with dwarfism is not treated as an "equal" when it comes to things like applying for jobs etc. They may be passed by even though they are as qualified as everyone else. When it comes to the term "disability", I think it's important to note that most forms of dwarfism do have some level of physical impairment which can usually be dealt with by simple things like stepladders, those extension grabby things (what are they called anyway?) and just plain common sense - but when it comes to the mind, dwarfism is not a disability in that area at all.
Are people with dwarfism just different to everyone else? I think that the real thing here is that this is how they want to be seen. Not as someone who is diseased. Not as someone who is disabled. But as someone who just happens to have brown hair while you have blond. Someone who doesn't wear glasses while you do. Someone who is a bit shorter than you but is completely your equal in every way.
Even though I do think that dwarfism does, in certain ways, fit into the category of "disease" and "disability", I understand why parents of little people don't like people putting their kids into those categories - it's because of the underlying things which say "your child is not normal" and "your child should be pitied" and "your child has such a hard life". I know that I get frustrated when I get those "vibes" from people. Yes, I do think that our child may have more obstacles to overcome, but I also believe that this will make her (and our whole family) stronger and that it will give us certain advantages through her differences as well. There are aspects to that which should be envied, not pitied.
There are people who are praying for us - but praying specifically for our child to be "normal". It upsets me to think that these people seem like they may not accept our daughter if she does not fit their perception of what "normal" is.
There are scriptures that say "And which of you by worrying can add one cubit to his stature?" (Luke 12:25, and virtually repeated word for word in Matt 6:27). We can't add any height to our daughter. And the bible tells us clearly that it's God who forms us in the womb - so He's the one who made her the way she is.
The bible tells a story of a man called Zacchaeus who wanted to see Jesus - but he was so short that he needed to climb a tree to be able to see Him. The bible doesn't specifically say, but I personally think that Zacchaeus may have had dwarfism. It's not common for the bible to comment on people's height, so when it does it usually is significant. It's interesting to note that in his encounter with Jesus, Jesus never "healed" him or made him any taller. He just accepted Zacchaeus as he was, and changed his life in the process.
Likewise, I love and accept our daughter however she is - whether she ends up being six foot tall, or only 4 foot tall. My prayer for her is that a) she is healthy (something that can be achieved regardless of whether or not she has dwarfism or not) and b) that God will use her life for His glory (maybe this is something that can be achieved specifically through her having dwarfism - I'll not limit God!). I hope and pray that all our family and friends can feel the same way about her.
