Sunday, December 1, 2013

ELL and the POLP on Facebook group

As most of you know, I tend to be very libertarian when it comes to discussion. I tried for a long time to run this group that way - I played the role of gatekeeper when it came to admitting members, but stayed very hands-off when it came to posts and comments. I had to change that recently in order to clamp down on a few discussions where emotions were starting to get out of hand, but I still tried to stay neutral when it came to discussion topics, in the belief that all discussion was good discussion.

Outside of the POLP group, I still feel that way. Stay away from personal judgements, and I will discuss virtually anything with you without taking offense. Religion, politics, etc - I enjoy a good discussion, even if I disagree with nearly everything you believe. Stay respectful and no topic is off limits.

Because of this, I’ve had a hard time dealing with the ELL topic on this group. In my personal life, I have no use for the subject. I’m quite proud of who my daughter is, and I’m extremely blessed by the friendships we’ve made through the LPA since Caitlin’s diagnosis. Since ELL does not solve any of the medical complications of her dwarfism, my wife and I see no reason for her to go through years of surgery. Still, because I believe all discussion is legitimate, I haven’t censored any conversations that involve ELL.

Unfortunately, every time the topic comes up, things get ugly. It doesn’t matter what I delete or how I threaten, it gets ugly. And honestly, the first ones doing the attacking have been friends of mine, and are generally adult LPs themselves. And some of them, some individuals whose opinions I deeply respect, have felt personally targeted by the responses. I’ve been trying to reconcile my opinions with the feelings of my friends and it hasn’t been making any sense.

But tonight my wife and I were talking about it, and something clicked. Let’s say that this was a group for parents of black kids. And let’s say that some of the parents were black, but more of them were white. And since sometimes it kinda sucks to be black in America, a few of the white parents have decided to find ways to make their kids look less black. They lighten their skin, and straighten their hair. It doesn’t make them NOT black, but it helps them fit in a little better. Nobody crosses the street to get away from them. Nobody keeps a close eye on them as they browse the convenience store. If they accidentally lock their keys in the car (or in the house), nobody assumes they’re trying to break in when they try to get back in.

This makes their life easier. And since it makes them happier, they like to share it with others. They share progress pictures with the skin lightening. They share before and after pictures, so you can see how much whiter they look. All their friends post words of encouragement. “You look fantastic! You're so brave!” “You’re almost as white as your dad, now!” “We are in awe of how far you've come!”

If you’re black, how would that make you feel?

Sound extreme? If you think so, I’m gonna guess that you’re probably average height. That’s not a judgement on you, at all. I’m a pretty open minded guy, and I didn’t see it this way either until tonight. But does it really surprise you that many of the adult LPs in the group feel the way they do about this topic? What those folks are posting about, what they’re encouraging, what they’re so happy about - it’s about eliminating the outward appearance of dwarfism. It’s not solving any of the medical issues created by dwarfism, it’s about undergoing a cosmetic procedure that stretches the shortened bones to gain height, and nothing else. Sure, it’s easier to reach things. But it’s also easy to put them on a lower shelf. I’ve seen homes completely remodeled to accomodate short stature, of course. But that extreme of a step isn’t necessary - plenty of folks shorter than 4’ tall do just fine in an average height world with minimal changes, thank you very much. I’ve seen it myself.

I’m not judging the folks who chose to undergo ELL. I’m friends with one of the average height parents who posts here regularly. Heck, she donated to my LPA fundraising campaign. But I do understand now why this topic causes so much division every time it comes up, and that’s brought me to a decision. As much as I hate censoring topics of any kind, ELL needs to go the way of politics and religion and stay on personal pages.


Christine said...

I hope it's okay that I post a comment, but I think your post is spot on. The comparison sums up a lot and I think should help everyone understand on some level why the posts get so contentious. Thank you again for your work with the group.

jennifer said...

Right on Mike. Yours is the voice of reason this group needs. You know how to get your point across, even dictate when necessary, without offending. Thanks for all your time, effort and commitment.

Ann said...

From our experience ELL did solve a major medical issue. Our Achondoplasia Daughters' knees were so loose and full of pain. You could literately wiggle her lower leg from side to side at the knee joint. She had one phase of Limb Lengthening and her knees do not sway from side to side any more AND her knees has been pain free for 9 years. She could have done it (limb lengthening) again, but she didn't want to. Even though she is 6 inches taller, she still gets stared and pointed at just as much as before.... She is still a little person.....but, she can walk around now, pain free. And I think that is wonderful!
If a child is born with one short leg, wouldn't you want to help them out if there was a procedure available??
Please remember that I am just posting this because I disagree with the comment that Limb Lengthening is only for cosmetic reasons and that it does not fix medical problems because that is not true. Eliminating pain is not a cosmetic issue.

Mike Mallinson said...

Hi Ann, I appreciate your comment. Typically, loose joints in achondroplasia occur as a combination of the cartilage not forming properly and low muscle tone. Did your doctors say how the lengthening improved her loose joints? I agree, preventing pain is a positive outcome, and not simple cosmetics.

Lengthening a single leg because one is shorter than the other is a completely different situation than lengthening to gain height, and I wouldn't include it in the same discussion.

Thanks for your comment!

Anonymous said...

I am pretty positive that lengthening the tibia makes the joint more stable. Although, because her knees were so unstable, Dr. Paley wanted to put lengthening devises on her lower leg and the femur at the same time, and he said it would fix her knees. And it did! So she is approximately 3" taller in her lower legs and 3" taller in her upper legs. But she has had no issues with her knees since then and that is incredible!

And you are right about the one short leg not being the same issue. When our daughter was having her procedure done, a father had brought his daughter all the way from Saudi Arabia because one of her legs was extremely shorter than the other. And Dr. Paley was lengthening it for her.

Ann said...

Anonymous is suppose to be ANN