OOPs..........LOL dwarfism and RSS

January 7, 2004

Didn't get a chance to finish my post......LOL! Okay, anyway, so I

am an achondorplastic dwarf. Okay, I am always interested when the

dwarf talk about RSS occurs. I am a member of LPA or Little People

of America. What bothers me is the tone of the way the word dwarf

has been perceived. To quote, " " growth disorder " sounds better

than " dwarf " " . I am in no way trying to be controversial or even

argumenative, but the word dwarf describes anyone with a growth

problem under 4'10 " . It took many years of struggle and adversity to

even be able to get this word to become known rather than midget,

which is highly offensive because of its origin as well as use. And

I worry by telling people and children that growth disorder is a

better word because it doesn't allude to dwarfism that what you are

saying is it is not okay to be a dwarf or someone of small stature.

By doing this I believe children will be ill prepared for what is

surely to come. There will be name calling, hurt feelings and trying

to accept oneself. That just comes with being a person of short

stature. Unfortunately in this world there will be people who say

mean things, not just children, but adults. And because you cannot

be with them at all times to handle the blows of growing up in an

image obsessed world, if your child is not prepared it will make life

harder. The word dwarf has become accepted among people as a

positive word rather than one of negative connatation.

I have suggested before and will again that it is important to know

people of short stature whether all dwarves or RSS adults so that

your children have positive role models who will teach them by

example and influence how dwarfism or short stature has enriched

their lives. And how they have dealt with the world outside of their

homes. It was and is an invaluable help to me. Especially in times

of struggle in my teen years. I learned to embrace my dwarfism

rather than be ashamed of it. And that is not an easy task. And

being RSS has the same acceptance issues as being an achondorplastic

dwarf. The same worries and concerns, though the health issues

differ. Yes, LPA seems to cater only to certain types of dwarfism,

but it is open for everyone. There just happens to be more numbers

in certain dwarfisms. But it is open to all types. And they are a

help in all parts of life. From finding things to help navigate

through everything physical, with doctors, insurance, basic needs of

life to the fun stuff. And there are adults there who are more than

willing to be friends with your child and be a buddy. To teach them

and help them. Because no matter how much you may want to, you will

never truly understand their feelings because you don't experience it

first hand. You are a bystander and will not always be there.

As an example, when I was thirteen I went to a superstore with my

aunt. I was sifting through clothes looking with her when I noticed

a person staring. Common in my life. So I stared back for a second

and then moved on. I turned and they were still there, except now

they had their whole family. I made it evident I knew they were

staring, hoping they would then stop their rudeness. However,

instead they then began following me through the store. I was

thirteen, not confident enough to then turn and ask, was there

something I could answer for them, as I would now. However, I seeked

refuge in the middle of a rack of clothes. Crying. Now that could

have scarred my whole life. I could have become a recluse or fearful

of all things around me. I went home and told my mom, who was

furious. But she had not been there. There was nothing she could

do. But when I told people at LPA they helped me deal with my

feelings and how to approach it next time. They validated my anger

and hurt and taught me how to deal with it and people like that.

They understood in a way my mom never can no matter how much she

would like to. And they taught me how to stand on my own two feet

and be proud of who I am. Why I am. I hope nothing so hurtful ever

happens to your children, but if it does are they equipped to handle

it? Who can they go to with their feelings? Who can say, I

understand and here is what has helped me. That is my worry when we

begin addressing it as a growth issue rather than dwarfism. That

there may be repercussions later on. I mean no offense or hurtful

feelings. I am just giving my two cents as a dwarf who grew up

knowing dwarves. As an adult who has come to appreciate those

friends and people who were there for me. And are still on those

days of understanding that I need that still happen. Hope this finds

all in the way intended. Kim

p.s.----soon moving to New Jersey, so if you would like to come to an

LPA meeting with me, be more than glad to have you!!!!!!!

January 7, 2004

Hi Kim,

I have to tell you, I agree. I had no idea that the " dwarf " factor

of RSS was so controversial. I thought that that was just the way it

was. That RSS is a form of dwarfism...period. So, this is new to

me. But, I have NEVER and will never think of dwarfism in a negative

light. And, no. It is not just because I have a cousin that is an

achondroplastic dwarf. I don't even see her much. But, that is

beside the point. I have no problems when I explain RSS to someone

that has a form of dwarfism. I don't care if they picture the

little people (munchkins) from the Wizard of Oz movie. I am not

ashamed of that at all. I am proud of my " little " and have no

qualms with him being a dwarf. I plan to be totally up front with

about RSS. I want him to be secure as he grows up and not

wonder what is going on. So, I just wanted to tell you that I had

been thinking all day about this. Please, I don't want to offend

anyone either, but I was wondering what was " wrong " with being a

dwarf. I agree totally to all you said, Kim.

Thanx for sharing,

Jodi R.

January 7, 2004

Thank you, Kim!!! Very, very well said!! I am an RSS adult and I one

hundred percent consider msyelf to be a dwarf. I also identify myself

as a person with a disability. I am VERY VERY proud of both of these

identities and embrace them wholeheartedly. I do not consider either

the label " dwarf " or " disabled " to be things to be ashamed of. Both

things are who I am. It is only the society that I live in that has

chosen to attach negative connotations to both of these descriptors.

For me, embracing my identity as a dwarf means that I accept my short

stature and love my body for the beautiful thing that it is.

Accepting the disability label means accepting that I experience the

world differently than my temporarily able bodied peers. I think that

it is so very unfortunate that disability in this society has come to

equal inferiority. Different life experience does not equal

diminished life experience.

I would also like to add that I have had an equally positive

experience with LPA. I've been a member most of my life and have only

benefited from the interactions I've had with people in the organization.

~Hillary

proud dwarf

proud person with a disability

proud person with RSS

January 7, 2004

Hear hear! The gist of all this is 'dwarf' is fine 'midget' is most definately

not. This whole discussion stemmed from the statement that RSS people are not

dwarves at all but midgets! Think we can probably put this one to bed now!!

Eileen

kimberlyd1021 harrykimd@...> wrote: