An Advocate's Call to Arms

January 8, 2009

This was posted

on Facebook by Katy Servos..

For those of you on special needs internet boards or email

groups, please pass this around.)

This morning on a local radio show in Kansas City, the morning show DJ was

discussing the Reborn Dolls. They are dolls that can cost several thousand

dollars and are made to look just like a real baby. They are extremely popular

with older women who either can no longer have children or have never had them

at all and wish to " make believe " .

She then went on to discuss how you can even buy these dolls with features that

make them appear to have Down syndrome. A rant began about how she didn't

understand " why anyone would want to buy a retarded doll " , etc. I was

in my car yelling and screaming at the radio . . . for once I was thankful that

I don't have a cell phone because my first attempt at contacting her wouldn't

have been very productive.

A mother to a child with DS called in and explained that if she were into

collecting these dolls (which she said she was not), she would be interested in

a doll with DS because of her son. She said he'd been nothing but a delightful

experience and that would endear her to such a doll. Afentra, the DJ,

apologized and said her comments were not aimed at this woman's son. She then

stated that while she could see where this woman might want such a doll, why

would these age 60+ women that the dolls seem to be most popular with want a

doll with DS? She said it's not like they could cure them, why would they want

a sick baby? The mother explained that Afentra's use of the " dreadful 'R

word' " was what was most offensive about what she had said previously.

What she didn't get a chance to explain was how " cure " and

" sick " are not appropriate terms, as well. Afentra explained that it

wasn't meant as an insult and she didn't feel like she should have to explain

herself everytime she used the word.

As soon as I arrived at work, I looked up contact information for the DJ, show

and station. Immediately, I found a link on their page discussing the dolls.

When you click the link, make sure you see the description of the discussion on

the dolls further down the page. I will copy and paste the segment in this

email in case their page changes in the future.

Please join me in contacting this station in defense of those we love. This is

far from the first slam towards not only those with DS but other disabilities,

made by not only this DJ and others at the station. Her husband Lazlo hosts an

afternoon show on the same station and constantly uses the R word.

Though I realize they are entitled to freedom of speech, I also believe that we

need to make our voices heard and let them know how many listeners and people

in general that they are offending and ridiculing.

http://www.965thebuzz.com/pages/2844954.php

Reborn Dolls

W.T.F? Who would own one of these or even buy one? You can choose your reborn

doll fully equiped with an umbilical cord or even down's syndrome....

Click here to see how disturbing these dolls can be!

MY EMAIL TO THE DJ:

Dear Afentra,

I am writing to you in defense of people around the world that have been

diagnosed with not only Down syndrome (please note the proper spelling for the

link on your website), but other special needs. One person in particular

happens to be my 3 1/2 year old son.

I am a 28 year old mother to an incredible little boy. His name is Sebastian

and he is the light of my life. Before his birth, I knew nothing about DS

beyond the negative stereotypes that most people with no personal experience

hold. Everything I thought I knew was wrong.

This morning, you mentioned that you grew up with lots of people with DS.

Actually, the words you used were " Down syndrome people " , as if their

diagnosis identifies them more than the fact that they are PEOPLE FIRST. If you

truly have had so much experience, all I can say is shame on you for providing

such a poor example of advocacy to your listeners.

People with DS are no longer institutionalized. This occured before anyone,

except a few advocacy pioneering parents, would give them a chance. Just in the

past few decades, knowledge and understanding regarding this syndrome has

exploded. It is not something that can be " cured " and it is not a

" sickness " . It is a genetic condition that occurs in the womb. Each

child born with DS is an individual, just people born without it. No one fits

into a stereotypical mold and everyone deserves a chance at being treated like

the human being they are. Recently, several mothers of children with DS put

together a collective group of stories about their experiences. I am priviliged

to not only have been an author to one of the stories, but to have my son

featured on the cover of the book. http://giftsds.segullah.org/

This morning was far from the first slam towards not only those with DS, but

other disabilities, made by not only this yourself but others at the station.

Your husband Lazlo constantly uses the R word. Retarded is a medical condition

- not a synonym for stupid. It is insulting. When you say something is retarded

as a replacement for stupid, it is the same as saying those with the mental

condition are stupid. My son is far from stupid.

Do you know that upwards of 90% of prenatally diagnosed babies with DS are

aborted every year? This is in part to all of the negativity that is slewn

around by people like yourself. Please put yourself in the shoes of the 1 in

800 people every year that are actually born with DS as well as those that love

them. Though I realize you are entitled to freedom of speech, I also hope you

will read what I have to say and think about how many listeners and people in

general that you are offending and ridiculing.

Finally, I hope you will read the speech below given by a high school senior

and consider what he has to say. It is very powerful and presents the best way

to think about how the R word is viewed.

Sincerely,

Katy Servos

The Retard Speech by Soeren Palumbo

I want to tell you a quick story before I start. I was walking through

hallways, not minding my own business, listening to the conversations around

me. As I passed the front door on my way to my English classroom, I heard the

dialogue between two friends nearby. For reasons of privacy, I would rather not

give away their race or gender. So the one girl leans to the other, pointing to

the back of a young man washing the glass panes of the front door, and says,

" Oh my gaw! I think it is so cute that our school brings in the black kids

from around the district to wash our windows! " The other girl looked up,

widened her slanted Asian eyes and called to the window washer, easily loud

enough for him to hear, " Hey, Negro! You missed a spot! " The young

man did not turn around. The first girl smiled a bland smile that all white

girls - hell, all white people - have and walked on. A group of Mexicans stood

by and laughed that high pitch laugh that all of them have.

So now it's your turn. What do you think the black window washer did? What

would you do in that situation? Do you think he turned and calmly explained the

fallacies of racism and showed the girls the error of their way? That's the one

thing that makes racism, or any discrimination, less powerful in my mind. No

matter how biased or bigoted a comment or action may be, the guy can turn

around and explain why racism is wrong and, if worst comes to worst, punch em

in the face.

Discrimination against those who can defend themselves, obviously, cannot

survive. What would be far worse is if we discriminated against those who

cannot defend themselves. What then, could be worse than racism? Look around

you and thank God that we don't live in a world that discriminates and despises

those who cannot defend themselves. Thank God that every one of us in this

room, in this school hates racism and sexism and by that logic discrimination

in general. Thank God that every one in this institution is dedicated to the

ideal of mutual respect and love for our fellow human beings. Then pinch

yourself for living in a dream. Then pinch the hypocrites sitting next to you.

Then pinch the hypocrite that is you. Pinch yourself once for each time you

have looked at one of your fellow human beings with a mental handicap and

laughed. Pinch yourself for each and every time you denounced discrimination

only to turn and hate those around you without the ability to defend

themselves, the only ones around you without the ability to defend themselves.

Pinch yourself for each time you have called someone else a " retard " .

If you have been wondering about my opening story, I'll tell you that it didn't

happen, not as I described it. Can you guess what I changed? No, it wasn't the

focused hate on one person, and no it wasn't the slanted Asian eyes or cookie

cutter features white people have or that shrill Hispanic hyena laugh (yeah, it

hurts when people make assumptions about your person and use them against you

doesn't it?). The girl didn't say " hey Negro. " There was no black

person. It was a mentally handicapped boy washing the windows. It was " Hey

retard. "

I removed the word retard. I removed the word that destroys the dignity of our

most innocent. I removed the single most hateful word in the entire English

language. I don't understand why we use the word; I don't think I ever will. In

such an era of political correctness, why is it that retard is still ok? Why do

we allow it? Why don't we stop using the word? Maybe students can't handle

stopping- I hope that offends you students, it was meant to - but I don't think

the adults, here can either.

Students, look at your teacher, look at every member of this faculty. I am

willing to bet that every one of them would throw a fit if they heard the word

faggot or nigger - hell the word Negro - used in their classroom. But how many

of them would raise a finger against the word retard? How many of them have?

Teachers, feel free to raise your hand or call attention to yourself through

some other means if you have. T hat's what I thought. Clearly, this obviously

isn't a problem contained within our age group.

So why am I doing this? Why do I risk being misunderstood and resented by this

school's student body and staff? Because I know how much you can learn from

people, all people, even - no, not even, especially - the mentally handicapped.

I know this because every morning I wake up and I come downstairs and I sit

across from my sister, quietly eating her cheerio's. And as I sit down she sets

her spoon down on the table and she looks at me, her strawberry blonde hair

hanging over her freckled face almost completely hides the question mark shaped

scar above her ear from her brain surgery two Christmases ago. She looks at me

and she smiles. She has a beautiful smile; it lights up her face. Her two front

teeth are faintly stained from the years of intense epilepsy medication but I

don't notice that anymore. I lean over to her and say, " Good morning,

Olivia. " She stares at me for a moment and says quickly, " Good

morning, Soeren, " and goes back to her cheerio's. I sit there for a

minute, thinking about what to say. " What are you going to do at school

today, Olivia? " She looks up again. " Gonna see Mista Bee! " she

replies loudly, hugging herself slightly and looking up. Mr. B. is her gym

teacher and perhaps her favorite man outside of our family on the entire planet

and Olivia is thoroughly convinced that she will be having gym class every day

of the week. I like to view it as wishful thinking. She finishes her cheerio's

and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie,

who, like clockwork, arrives at our house at exactly 7'o'clock each morning.

She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for

another day of school. And I watch the bus disappear around the turn and I

can't help but remember the jokes. The short bus. The retard rocket. No matter

what she does, no matter how much she loves those around her, she will always

be the butt of some immature kid's joke. She will always be the butt of some

mature kid's joke. She will always be the butt of some " adult's "

joke. By no fault of her own, she will spend her entire life being stared at

and judged. Despite the fact that she will never hate, never judge, never make

fun of, never hurt, she will never be accepted.

That's why I'm doing this. I'm doing this because I don't think you understand

how much you hurt others when you hate. And maybe you don't realize that you

hate. But that's what is; your pre-emptive dismissal of them, your

dehumanization of them, your mockery of them, it's nothing but another form of

hate. It's more hateful than racism, more hateful than sexism, more hateful

than anything. I'm doing this so that each and every one of you, student or

teacher, thinks before the next time you use the word " retard " ,

before the next time you shrug off someone else's use of the word

" retard " . Think of the people you hurt, both the mentally handicapped

and those who love them. If you have to, think of my sister. Think about how

she can find more happiness in the blowing of a bubble and watching it float

away than most of will in our entire lives. Think about how she will always

love everyone unconditionally. Think about how she will never hate. Then think

about which one of you is " retarded " .

Maybe this has become more of an issue today because society is changing,

slowly, to be sure, but changing nonetheless. The mentally handicapped aren't

being locked in their family's basement anymore. The mentally handicapped

aren't rotting like criminals in institutions. Our fellow human beings are

walking among us, attending school with us, entering the work force with us,

asking for nothing but acceptance, giving nothing but love. As we become more

accepting and less hateful, more and more handicapped individuals will finally

be able to participate in the society that has shunned them for so long. You

will see more of them working in places you go, at Dominicks, at Jewel, at

Wal-Mart.

Someday, I hope more than anything, one of these people that you see will be my

sister. I want to leave you with one last thought. I didn't ask to have a

mentally handicapped sister. She didn't choose to be mentally handicapped. But

I wouldn't trade it for anything. I have learned infinitely more from her

simple words and love than I have from any classroom of " higher education " .

I only hope that, one-day, each of you will open your hearts enough to

experience true unconditional love, because that is all any of them want to

give. I hope that, someday, someone will love you as much as Olivia loves me. I

hope that, someday, you will love somebody as much as I love her. I love you,

Olivia.

January 8, 2009

Aside from the negative comments regarding ds... this is just weird, boarding on sick.I thought I had seen it all, evidently not. ;o) Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace.com/vennamusicFrom: Kathy Ratkiewicz To: MichianaDownSyndrome ; IDSFparents ; DownSyndromeInfoExchange Cc: Indiana_Family_Connection Sent: Thursday, January 8, 2009 8:26:04 PMSubject: [DownSyndromeInfoExchange] An Advocate's Call to Arms