Tuesday, July 13, 2010

Dwarfism: Disease, disability or just different?

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.


  1. You are so so right in all that you have said here. My form of dwarfism (Morquio) has many complications so I don't hesitate to call it a disability because it is. Nevertheless my frustration really begins when people can not see past my wheelchair or other adaptive equipment. And I love what you said about God making those with dwarfism (and probably your daughter) short. When I was in grade school we had a neighbor who was praying for my healing and when my mom found out she felt guilty because it never crossed her mind! LOL!!! It's a hard thing for some people to really get but I bet anything your daughter, with a loving and supportive family behind her, will help them understand. :)

    Danette Baker
    Spokane, Washington

  2. Thanks for the interesting post! Since we carry a gene for a lethal dwarfism, I tend to think of it more as a disease- after all,it killed my child. I can understand how those whose children have types that are not lethal would disagree with viewing their child as having a long-term disease or disability, as labeling can feel offensive, and I'm sure that the dwarfism isn't what they see when they look at their child.
    I hope you are doing well as you approach your due date! Such an exciting time for you and your family (and the little bub).

  3. Great post, Nic! Your observation about Zaccheus is an interesting one, and I think it's a very real possibility. God's got his hand on your daughter, and regardless of her stature, she's going to be blessed. Praying for you and Bernie, and excited for the coming addition to your family.


  4. I think you got it right! I think when it comes to the term disease most POLP cringe because a disease is something that people search to cure. There is no need to cure short stature. In my daughters case her condition is Osteogenesis Imperfecta otherwise known as Brittle Bones Disease or Disorder (another not so accepted term). The word disease is right in the name of her condition! This does bother me, I don't feel like my daughter needs to be cured. God made her this way and I accept her the way she is! This isn't to say that I won't do everything in my power to help her! She does receive bone strengthening IV medicines to prevent some painful fractures, ease chronic bone pain and give her a better quality of life! Just as parents of children with Achondroplasia would absolutely help get their children the decompression surgeries to treat severe Hydrocephalus (life threatening)that arrise due to their type of dwarfism. In our case we accept the term disability almost... Yes my daughter has a disability, she can not walk or even stand without the use of durable medical equipment such as pediatric walkers and wheelchairs. I am now favoring the words "differently abled" and wish that the majority of the popultaion and government would accept this as a better non offensive term. The definition of "disabled" is just so upsetting! Look it up in the dictionary and you will see this "incapable, disqualify, crippled, incapacitated, injured, restricted, limitted, not able bodied..." When I look at my differently abled daughter I don't see all that she can't do, I see all that she CAN DO, heck I don't even see her as differently abled! I see her as my Sonya! There are no lables! I think that the majority of the population is unfamiliar with the PC terms that are preferred and that's where awareness needs to shine which you are doing an awesome job of just by blogging this post! I didn't even realize that the term "handicap" wasn't PC until just recently! I agree with Danette, it's just so hard for some people to get past all the equipment and wheelchair and see the person for who they really are! Too many people just get so hung up on lables. When someone meets my daughter I want them to say "I just met a sweet girl today named Sonya" not "I just met a sweet dwarf/disabled/really different girl today." Just like your skin color doesn't define who you are, your body type doesn't either. Just my 2 cents! You are doing a fantastic job Nicole! You are so ready to be the best mom for your baby!!!