For a more progressive LPA in 2007 and beyond

[Guest guest]

I find 's response to and Ditalini's original post, thought-provoking

certainly, and agree with whole-heartedly in recognizing ditalini's courage

for posting about the personal experience and also appreciate their recent

posts about the dwarf community.

LPA has struggled in recent decades with providing more services to the

dwarf community and embracing a more honest image. At this late hour, going

back

to work tomorrow after a week and half off, I know it will be a stretch to

try to respond in a thoughtful and comprehensive way. Hopefully others who are

more alert and more involved these days will weigh in as well.

I know it sounds hollow, but we've come a long ways on both fronts, but it's

like watching polar ice melt, especially if one is on the outside, I'm sure.

One big reason LPA went through the multi-year painful 501c3 (IRS

non-profit, charitable tax-deductible) status evolution in the 1980's was to

try to

better serve, even reach, the unserved dwarf population out there in rural,

urban and even suburban US. (It's always scared me that I only know half of

the

local dwarf women I'm mistaken). Most people know about us now, thanks to

TV saturation and the internet (although that isn't universal even in the US,

it's another economic class thing) but that doesn't mean we can still help

individuals with what they actually need directly, effective healthcare,

supportive and informed families and communities, employers. Although, I

think

that is slowly being affected, but it's hard to measure, it's more nebulous and

we owe a lot of that to the ADA and the greater disability movement.

Speaking of disability rights, it took us some doing to get a handle on that

too. We have reps on official federal access committees now, and individual

dwarfs have been involved in the disability movement all along, but as an

organization, we haven't always been. Disability activists that I've known,

have been suspect sometimes or bemused at least, at our close connections with

the medical genetics community. No other affected-adult disability

organization that I know of, has that. It was weird for me when I was involved

in

genetics ethics issues in the 1990's. That's a whole complicated chapter in

itself.

In the late 80's some in LPA began to have quiet discussions about mental

health issues, addictions, demographic minority groups, etc. We start things

at conventions (workshops) that are much harder to translate into ongoing

services when the lucky few who get to conventions go home and esp. to the

masses who for some reason don't have the grand it costs to go to convention

when

it's not in their town.

For the twenty years that we've had 501c3 status, we've still had a hard

time attracting charitable contributions to provide services. Most of us are

not dying of dwarfism. Like others with physical disabilities especially, we

emphasize how much we are like everyone else, as prospective friends,

employees, neighbors and mates. Yes, sometimes we're too emphatic about that.

Some

of us do die from complications and many are disabled more than they

should/could be. It's hard to paint a clear picture for PR, we're just as good

as

everyone else but we need assistance (a stool or specialized medical care).

The financial piece was my weakest suit in my years in LPA board circles, so

I'm not up on the specifics and certainly not now that I'm totally out of

it. But surely, part of the challenge has been not having full-time executive

staff for much of that time, just here and there. Our board of directors is

generally leaders in our own community, most are not business tycoons like on

many boards. There isn't a problem with that format, necessarily, but it's

different.

I think Joanna, with the backing of the current Board and officers, may be

making headway on the grants front. Maybe CoDA, using the American cable TV

audience and it's sizeable disposable income, will help.

And speaking of (one of the observations that's been made about) the TV

show, yes, in many ways it's easier being a dwarf if you are middle class or

even

upper middle class, you can choose schools/communities, find/make an

accessible home, find schooling/training for a trade or profession that fits

your

strengths as well as interests, choose healthcare that covers the specialists

that have experience with your medical needs, have financial means to travel

the internet and the friendly skies for friendship and information. I'm

thankful for my parents who were over their shock about me in time that I

didn't

know about it until I was a relatively well-adjusted young adult (the one year

they didn't send a Christmas letter to their friends was the year I was

born); they moved when job prospects allowed, closer to medical experts,

regularly got me to District One events although they were 3-6 hours from home,

plus

conventions, sent me to college, etc. I know I'm lucky. I know my son, who

was almost 6 in an Eastern European orphanage when I met him, would not have

been so lucky, even if his bioparents were alive.

There are many things we've started to talk about still quietly amongst

ourselves. Underemployment even among middle class youth that have grown up in

the dwarf community. Prescription drug abuse. Some issues, like sexual

activity at conventions, are discussed publicly, written about widely even,

because it's interesting and tantalizing, but we haven't gotten a handle on ...

As

the mom of a teen son (who isn't attending a convention alone until he's 35,

I've told him already ...) I have a new appreciation for this one.

The best efforts on some issues have been when someone has come forward and

said " I want to do somelthing about this, because I care deeply about this

issue. " Cara has done this in terms of talking publicly about double dominant

pregnancies. This used to be whispered about. It was a private pain.

Almost everyone in LPA knew a family affected by such, if not themselves, but

we

didn't talk about it except in terms of genetics ethics, but not the personal

pain. Don't get me wrong, I totally respect the private, personal part. But

I can only imagine the good that has been done already by the connections

and work on this one issue in the last year alone.

Well those are random thoughts. I appreciate the recent postings. Thank

you for raising such an important issue. I find it fascinating that the

current moderators of the main online discussion groups in our community are

folks

who are not from the traditional LPA world. I think that's healthy. I am

thankful that the internet has served as a way for the LPA community to

interact with the non-LPA dwarf world. But it's not a full-service thing and

it

doesn't reach everyone anyway.

Ruth Ricker

LPA member 1966-now

LPA President 1994-96

LPA mom 1997- now