Thursday, April 24, 2008

Little People, Big Problems

Well, I was up forever last night because my legs were killing me, probably because I dared to wear shoes other than my sneakers and actually go out and have a life yesterday! But it was all good, because while I was trying to take my mind off the pain, I happened to turn the TV on right in the middle of a marathon of one of my absolute favorite shows, Little People, Big World.

For those of you who don't know the show, it follows the lives of the Roloff family, who live on a farm in Oregon. Matt Roloff, and his wife Amy, are little people-meaning that they have dwarfism. They have four kids. Jeremy, Molly, and Jacob are all average height, while Zach, Jeremy's twin, is a little person. The show does not focus primarily on the challenges that little people face, but it is a theme in a lot of the episodes.

Anyway, one of last night's episodes focused on Matt, Amy, and two of their friends-who ar also little people-testing the kit made by Matt's company Direct Access Solutions. This kit is a Little People Accessibility Kit. It is meant to be used in hotels and includes pretty much everything a little person might need in a hotel room, including a specially designed step stool and a reacher to get things such as the remote that might be in a place too high for a little person. I thought this kit was an ingenious idea, and I'm wondering why I haven't seen a kit like this in any of the hotels I've stayed in. Maybe you have to ask for it? Then that opened up a whole flow of musings for me about whether it should just BE there, instead of you having to ask for it. I feel like the right thing is to just have it for any little people who may stay in that hotel room, instead of having to ask for it. Because I feel like asking for it is like acting like having a little person staying in that hotel is a special case, something that's out of the ordinary. Which kind of gives the impression that little people (and this goes for all disabled people, not just little people) don't travel and do stuff like "normal" people do. Which is stereotypical. Which is one of the things that annoys me.

And then later in the episode, Matt came out to find a parking ticket stuck to the windshield of his car. Unfortunately it was in the spot where most "normal" people would be able to reach it and pull it out, but for Matt it was impossible. He tried every which way of getting it, it was getting kind of comical, actually. But it really made me think about the little-no pun intended-things that little people may have difficulty with.

Here's another example: In another episode, Matt was explaining how it's difficult for him to get up stairs because he is a diastrophic (have no idea if I spelled that right) dwarf. Diastrophic dwarfs typically have more problems with their joints and bones than other types of dwarves, which is why Matt usually walks with underarm crutches or uses a scooter. Zach and Amy are acondroplasic (I really don't know if I spelled that right) dwarves, which means they will not have as many issues with their joints and bones and will have an easier time walking, climbing stairs, etc. It really opened my eyes and made me realize that, just as I'm forever telling people that CP does not just affect my legs, dwarfism does not just affect your stature.

Anyway, I've been procrastinating long enough. Time to get back to homework. Adios!

Monday, April 21, 2008

Sweet Nothing In My Ear

This might be a long one, bear with me....

Last night I watched the very interesting Hallmark movie called "Sweet Nothing in My Ear". The movie is about a couple who have a deaf child, and they are considering getting cochlear implants for him. For those of you who don't know, coclear implants are small electronic devices that can help a deaf or hearing impaired person hear better. For more information about cochlear implants, go to The wife in the movie, played by famous deaf actress Marlee Matlin, is deaf herself, and is adamently against the implants. She feels that that would send a message to her son that something is wrong with deafness, that it is a disability that needs to be fixed or cured. The husband is hearing, and feels that his son should have cochlear implants in order to fit in better in the "normal" world. I found this movie absolutely fascinating and it raised some interesting issues, particularly, for me as a disabled person.

I always say that CP is engrained in me too much for me to want to be cured. It influences every aspect of my life: my friends, my personality, my views on certain issues. But I have considered the question of: what is crossing the line? What is going too far towards a "cure"? Cochlear implants do not "cure" deafness, however, they do make it so a deaf person can hear some things. Is that going too far towards a "cure"? Is that sending the message out that deafness does need to be "cured"? The mother in the movie seems to think so. However, I can also understand it from the father's point of view. He wants his son to hear music, to be able to talk with his voice as well as with his hands. He doesn't think his son is broken or wrong in any way. He just wants his son to have an easier life. But, as we all know, life is not supposed to be easy, and sometimes the right decision is not the easy one. Having a disability is not easy. Having CP is not easy, and it's made harder by other people's attitudes and stereotypes about us. However, having a not-so-easy life has made me stronger in many ways. I can't imagine life without CP.

I thought at one point in the movie, the mother made a good point. The parents were talking with a doctor who specializes in cochlear implants and hearing problems. The mother said "He won't fit into the hearing world because he won't be able to hear the things other kids do, and he won't fit into the deaf world because he won't be totally deaf." Then the doctor said "I think you'll find he gets the best of both worlds." That's not true. Sometimes being in between two worlds is harder than fitting into one or the other. As a person with mild CP, I often feel like I don't quite fit into the disabled world or the able-bodied world.

Gotta go, I'll post more later!

Sunday, April 20, 2008

Wheelchair bound?!

Just wanted to blog quickly about the usage of the phrase "wheelchair bound". I was bored and so what do I do when I'm bored? I look at news articles on disability! Many of the articles I looked out used the phrase "wheelchair bound" which is a phrase I absolutely, positively cannot stand. I've heard other disabled people say it conjures up an image of a disabled person chained to their wheelchair, and it does the same for me. But what annoys me the most is that it gives the impression that it is the wheelchair that limits us. It's the same with the phrase "confined to a wheelchair". A wheelchair does not limit a disabled person; in fact, it frees us. A person who uses a wheelchair to get around is going to be much more independent that way than if they walked with assistive devices, or didn't walk at all. Even for people like myself, who have mild disabilities, a wheelchair can be an asset. I am getting a mobility scooter soon for college and other places where I might have to walk a lot, and I can't wait! (Isn't it so disability nerdy of me to be excited about a new mobility device? I get the same way when I order a new pair of crutches.) The scooter is going to allow me to go places I could have never gone before, because I couldn't walk that much or that far. I have several friends who have gone from using manual wheelchairs to power wheelchairs, and have found them so freeing. A wheelchair can be a step towards the independence that all of us, but especially disabled people, crave.

"I wasn't born with a chair glued to my butt!"

-my best friend who uses a power wheelchair. This is her response to the timeless question "Were you born like that?"

Saturday, April 19, 2008

A note of explanation and welcome...

First of all, I'd like to welcome you all to my new blog. This is an idea that has been rolling around in my head for awhile-creating a blog, I mean. I have a lot of ideas in my head that usually never get written down, so I'm creating this blog for that purpose. I'll mostly blog about disability issues and general rants, but who knows? I might blog about other stuff, too! *grins* I'll keep you on your to speak, seeing as I can't go on my toes.

OK, before I start rambling (which I think I've already done), I want to offer a note of explanation as to why I named my blog "Candidly Crippled". I know some people will balk at the word "crippled" and I wanted to clear those issues before they arise. I am crippled. I use the word as a term of disability pride. That's right, pride. I am disabled. I am very involved in the disability community and culture. I am not ashamed of who I am, in fact, I am proud. I wouldn't trade my CP for anything. It has made me who I am as a person and shaped my thoughts, my ideas, and my general outlook on life. I am candid. I'm not going to sugarcoat anything in this blog. I don't deny that the life of a disabled person is difficult sometimes, but it is made more difficult by others assumptions and stereotypes about us. So, for any able-bodied person that is reading this, I'm going to try and show you how we feel. We don't need your pity. We don't need your patronization. All we need is for you to see us as you would any other person. Thank you.