Friday, December 9, 2011

Words Hurt but how can I help make it better?

Sometimes words can be so hurtful.  On most days, I can handle comments, criticisms, questions and even stares.

Last week was different.  While driving to pick my son Danny up from ~s c h o o l~ (spelling and not saying out loud because the spoken word scares him), I turned on the radio.  It was 12:50pm on November 30, 2011.

Still the words echo through my head .... and I feel that same disorient throughout my body and the nausea starts to rise all over again.

I listen to a female radio host laughing hysterically, "...It's ok to call the retards retarded to their face because...."  am I hearing this correctly?

more laughing

"they don't know the difference.  The retards don't even know what you are saying.  Retarded, retards, retarded retarded retarded"...

I turn up the volume thinking I am having a bad dream.

"I like to say it like re-tard" [while placing the accent on the 2nd syllable]

"Just because ... re-tard re-tard re-tard.  Wait wait wait, guess what?  Can you ... Did you hear what the advocacy groups want the retards to be called now?  Get a load of this... Are you ready?  Intellectually abled..."

Now the male host joins in, "Can you even imagine little Johnny being the new student and the teacher trying to explain to the class that there is going to be a new student and he is intellectually abled..."

Laughing.... on both parts of the radio hosts.... the female host keeps expanding...

"What the heck else would you call a retard other than retarded?  Retarded's retarded. "

I was shaking.  I had to pull over to find the number to the radio station.  I dialed, the call screener answered and I explained that I was extremely upset and I couldn't believe what was being said on the radio.  How could this be happening?  How can these words be used in such a derogatory manner over and over again.  It is so hurtful hearing this, and that I have a son with a medical diagnosis of mental retardation and these words should not be used in such a way  ....

My body seemed to go into shock mode.  As I held in the wait cue, my head started to feel like it was going to explode - and my anger kept building.  The female radio host seemed to introduce me, "We have Sue on the line from PA and she has a retarded kid and is upset by our earlier comments."

I immediately asked the female radio host why is it that she had to label everyone?  She said something but I didn't finish my thought yet - I continued to speak over her in a very direct and angry fashion and asked her why she felt the need to use that word over and over again?  I told her that I have a son and he has a name first - not a label and his name is Danny.

Both hosts were laughing even harder and even started to make fun of me.  The female host asked, "Why would you say to the screener that you have a retarded son and have the nerve to tell me that I am labeling people?  You just did what you say I am doing."  She repeats this in such a way to make me sound horrific.

I try to get out that she is using the word in a negative fashion and if I use the term it is used to describe a medical label.  I remember asking  "Don't you realize that it is the year 2011?  How cruel her words were.  etc -"   I was cut off.  The male radio host asked what I meant by saying it was the year 2011.  They seem to pretend that either I hung up or that we were somehow mistakenly disconnected.  They then took this opportunity to call me a moron, an idiot, a retarded lunatic, etc.

It continued on and on.

They became more aggressive with the 'retarded lingo'.

Another female listener called in and noted that it is the way the word is used. The female radio host noted that at least this caller was somewhat intelligent .vs. the last 'retard' caller.

A male caller noted that some people just have too much time on their hands (meaning myself).  He said that the word moron, idiot is used all over the place and even noted that the word lunatic is still printed on a sign of an institution in New Jersey.

The female radio host appreciated his call and called me more names.  "Like the retarded mom with the retarded kid that called to say that it was 2011..."

A female caller phoned in and said she was a behaviorist who works with autistic kids and that the only people who get upset by this sort of talk are the parents.  My pit in my stomach heightens as I listen to this caller.  How could someone that is most likely paid by families that have children on the autism spectrum, who may or may not have "mental retardation" make a comment like this? How can she call herself a "behaviorist"?  How can she even work with kids?  How can she walk into our homes?

I had to call back,  I felt a dire need to have this stop. I would like both radio hosts understand this was "hate" and how cruel they were talking.  My own body begins to have pain as I think, How could these radio hosts continue to sleep at night after this "on-air" broadcast?

I did call back.

The same person answered - whom I thought was the call screener, but later found out that it was the producer.  I was crying.  I had reminded him that I was the "retarded mom with the retarded kid who just called a moment ago, I am Sue from PA."

I asked him asked him why the female host said, "...Sue from PA was on the line and she was upset because she has a retarded kid..." when our pre-screen did not happen that way.  He apologized and said that it was mis-communicated due to time constraints.  He promised to get my message to her.

That night, I received an email from the female radio host:

Dear Sue,

The part of my job I hate most is that sometimes people hang up angry and sad. And in real life, I am the kind of person who doesn't like to have anyone mad at me. So the first thing I need to explain is that part of the job is giving an opinion and then sticking to it as if your life depends on it. Even if real life you'd never be that stubborn and obstinate, the idea is to have this really strong opinion and the rule is to never see the other person's point. So I'm letting you in on an inside radio secret: I am in no way as obnoxious as I sound on the radio.
That having been said, I completely understand your pain as I also have a child with disabilities. And it doesn't matter the extent or the nature of the disability, as mothers, we cry every day over the suffering of the children we love.
Today I felt very strongly about what I was saying to you because you came on the air with a personal attack on me which simply was not true. And I felt that you wouldn't give me a chance to explain my point of view. The fact is, had we had more than the allotted 2 minutes I can give you on the air, and had we been talking over coffee in person, I would've been able to explain myself more clearly. But since an accusation was made ("You label everyone!!") I had no choice because of my job description but to defend myself and attack you back. Again, that's my job. It makes good radio. Unfortunately, It also makes for hurt, misunderstanding and hard feelings.
This is the first time I have ever written a listener who called my producer upset. I am not required to, nor do I think it's good practice for me to do so, because the way it works, I'd be writing 100 letters a week apologizing to people!
This letter is not to change my opinion about "terminology". I don't really think it makes a difference what we call people or how we classify them. And if you were my friend and said, "xxxx, it hurts me when you call my son "retarded", then I certainly would honor your feelings and refrain..However, in general, I maintain, that politically correct terminology such as "differently abled", "aging" as opposed to "elderly" or "little people" as opposed to "midget" are generallly very subjective, and usually sound silly. For instance, I don't have one friend who calls himself "African American". They all say "black", and so do I. By the same token, If a friend told me he or she was hurt or offended by the term "Black", I would certainly respect him or her by using the politically correct term.
But someone decided what's correct, and we all have to follow like sheep. And I resent that. For instance, I abhor the term "special needs" and never use it to describe my son. It's silly and inaccurate, and doesn't serve any purpose in his or my world.
Now that I've made my point I will tell you what I DO want to apoligize for: I'm sorry for hurting your feelings to the extent that I apparently did. l understand you have many problems in your life, and I don't want to add to your suffering. Suffice it to say, you wouldn't want to have my problems, either, as I have suffered through many many problems over the last few years as well. So please accept my apology for making you so sad and angry, and I wish you strength through all of your challenges.
Respectfully yours,
xxx xxxx name
xxx xxxx radio station FM

In my opinion, the radio hosts spoken words outweigh her written response (to say the least).
I did not sleep that night, or the next or the next...   To try and explain how my mind and my body felt "ATB" After This Broadcast isn't possible.

I need to take action.  I want my message to get to the sponsors, management, producers and listeners  of the radio station.  I had to calm down and try to write a sincere letter about what happened, how it made me feel and what I wanted to do to help the radio station with this situation and yet try to be unemotional.

If want to do this in the right way, it needs to be timely, and sent to everyone at the same time.  I want to have the facts and use names and quotes.  I also want to let them know that I am well connected with many advocacy groups both in PA and NJ, and that these groups have tons of information on people who have disabilities, how people with a medical diagnosis of mental retardation do have feelings and that all people should have dignity.  I have to get these hosts to understand that it is their words and their broadcast that keeps society in the dark because of the language they use.  Truly, at this point,  it isn't about freedom of speech anymore.  That line has been crossed.  The enormity of this broadcast now "promotes hate" within, throughout and across communities.

The next day, I did indeed call the general manager for the radio station and left a message for her to call me back.  I was told she was in a meeting.  (December 1, 10:08am)

I also called again, and was transferred to the person's voicemail who is in charge of providing broadcast via "The Freedom of Information Act" as sourced by 5 U.S.C. § 552, As Amended By
Public Law No. 104-231, 110 Stat. 3048.  I also left a message requesting a copy of the broadcast (December 1, 10:14am).

I link online to the FCC (Federal Communications Commission) and fill out a formal complaint [via unfair, biased or illegal broadcasts].  I press "submit" and and make a note of my case file number.

To this date, I haven't received a return call or email from the radio station or the FCC.

I  would like to to get an actual copy of the live broadcast so I can transcribe or listen again to an audio file of the actual broadcast as it was spoken on November 30th, 2011.  It seemed that this word was spoken at least fifty (50) times this word in such a hateful way.  Or was it a hundred (100)?  Was it more than that?  and Why?  The words that were spoken are the actual facts and it is important to me that the facts are also provided with each of my requests.

The next day, an email went to the general manager from someone who heard part of the broadcast and knows my son and I:
I was disappointed..outraged...saddened.. disgusted with the recent conduct of one of your DJ's yesterday who brought up the topic of "retards" and the way a caller (a mother of a child that was diagnosed with Autism) was spoken to so cruelly. I will not be listening to your station, and I plan to lodge a formal complaint. Your staff should be spoken to about human compassion and empathy. God forbid one of you should ever have the hard ships that a family that has someone with a mental disability goes through. 

A note that I received from a friend with after reading the the female radio hosts email to me:
I found her "apology letter" completely lacking in sincerity and quite offensive. She wasted many words saying she doesn't care about labels AND she denied responsibility of her actions by stating that she was "personally attacked" and "had no choice" by the 'label' that "she labels everyone". I am so sorry for what you went through. I care about you and Danny and I feel that you should do what will be best for you. There are times to take a stand and times to let go. I will support you in any way that you need in whatever decision you decide to take. 

Another note received from a friend:
As the broadcast went on, I heard her say that her own son was "weird" and "freaky".  It is my belief that some level of management had gotten a message to her and told her to back down on what was being said.  She seemed almost apologetic and was saying that  she suspects he probably looks like he has "aspergers".  It seemed that she was saying she has a weird kid too.  In all honesty, she didn't Label him into her "retarded" category that she was hysterical laughing and talking about 5 minutes prior.  

I realize after reading this note and remembering back to how she was describing her own son, her email was different from what she spoke.  He email leads one to believe that she has a "special needs child".  Why?  I wonder if she is even being honest?

I normally pick and choose my battles.  Of late, it is rare if I call or advocate for anything or anyone, other than my own children.  Most days I don't feel well enough.  For me to call, it was beyond despicable.  

Freedom of speech?  Dr. Laura Schlessinger was fired from her radio station b/c of her repeated use of the "n" word.

I agree that we supposedly have freedom of speech in this country.  I also agree that political correctness in general is way to overbearing at times.  However, there is a line between a joke, a laughing matter and unspeakably way too much.  Granted, one cannot please everyone all the time.  I assure that the radio station gets letters all the time.

With this post, I would like it to serve as my official "letter" to the radio station, to the listeners, to people and give a perspective, through everything I have experienced via my own personal issues as a mom or even just a person, that this line was crossed.

It stops being a joke and funny at a point.  In the beginning, I listened because I wasn't sure what the radio hosts were saying and why they were saying these words.  As it went on, it became a message to people who may not know anyone who has a disability.  These people have been now given a preconceived notion.  The fact alone that the radio hosts have given a preconceiving notion to their listeners and perpetuating this prejudice is unethical and immoral.  This, they should not do.  The line is crossed.  Now, people who don't know will tell their kids what they heard and now believe.  The next generation will be getting this information.  This, I cannot understand nor let undone.

It is my hope that we can work together to try and inform people that just because you have mental retardation, down syndrome, autism or any type of official mental diagnosis as prescribed by the DSM -IV, you are thought of negatively. Perhaps people think differently. It doesn't mean you are not a person.  It doesn't mean you do not have feelings.  It doesn't mean it is ok to talk like that.  Feelings do exist in everyone.  We all can be a part society.  Everyone can help and contribute in their own way.  For example,  individuals who have down syndrome are attending colleges and receiving diploma's and degree's. 

I have numerous resources, many years of experience and information to share and help make this better.  I would be willing to volunteer my time to help people gain an understanding of where that line is and everyone belongs!

Sometimes it just is not worth it.  You can still have good radio without hate and without destroying the dignity of a population.  How can I help?  

It is with my 2nd blog post that I cc a copy to:
General manager
VP of Sales/Market Manager
Program Director
News Director
General Sales Manager
Local Sales Manager
VP/Director of Non-Traditional Revenue
Director of Marketing & Promotions
Production Director
Chief Engineer
Producer of the show
The radio show hosts

Suzanne O'Mullan

Tuesday, December 6, 2011

The beauty of a "Dannylions"

Happy Tuesday!

First order of the day, I mean blog... how do I even narrow things down to a subject for a daily blog?
One of the main reasons there hasn't been a blog....

I think I'll start at the beginning.  Why dannylions... or is it dandelions?

I guess you could say that we take things one at a time, one day at a time.  We live at a different pace, in a different sort of way, you could go as far as to say on a different planet during some days.

At the age of one, not much would interest or keep my son focused.  I think back and it is a hard place to go.  I fill up with so much emotion that it is difficult to keep this first blog going.

I try to remember ... looking at him walking around the back yard, climbing anything he could climb, getting into anything that was able to be gotten into.  One teeny tiny detail that would forever change my life - he would do it all "one handed".  The other hand was always dedicated to a holding a dandelion.  He would stare and stare into this little yellow wonder and continue to go about his daily business of finding things that needed to be glued down or moved to a higher place.

His little chubby fingers would touch the yellow petals of the dandelion.  He would hold it up to his cheek and rub it ever so gently to "feel" the beauty of this yellow wonder.  Watching this was one of the most precious memories for me.  He would do this for years.

I also remember being in that moment looking at him, half smiling and all knowing that it was just a weed.  Sometimes chuckling, I would talk outl oud (to no one in particular) and say that it figures my kid would love a weed.  I would think sarcastically, why he would just ignore that huge bright orange fluorescent life size plastic toy in our back yard.  What great fun right?  Nope. Not my Danny.  That huge plastic toddler safe gross motor toy would have absolutely no attraction for him.  However, he could spot that one dandelion two yards up at the neighbors yard that he wanted.

Dandelions... the things that drive my husband a little crazy in the springtime.  The blooming of the yellow flowers that most people think of as a chore. To have a dandelion free yard requires patience and a strong back.  The roots are long and so tough that one needs a special tool to dig down and pull the main root.  Worse yet, when the dandelions turn into a seed flower in your own yard.  Neighbors frown upon this. It is just plain not Martha like.

As a small child, I have a few memories taking delight when the yellow dandelion flower would turn into a round seed fluff ball. There they waited, to be picked, wished upon and blown for the outdoor air to carry to the heavens where each and every wish would hopefully come true.

Prior to my son, I have never known anyone to love the yellow flower of a dandelion.  The name officially changed in our house from dandelions to dannylions.  His brothers would pick the yellow flowers and bring bouquets of "dannylions" to both Danny and myself.  I would run inside and put mine in a little plastic cup of water which would show my appreciation for their pickings.  It was they who named the flower dannylions - and we kept it!

During my lifetime I have come to appreciate the beauty of a dannylion.

A dannylion is so fragile, so beautiful when you take the time to look at the actual flower.  It transforms right before your eyes from a beautiful yellow flower to a miraculous lace like flower that is ready to grant wishes and give joy to someone if only for a moment.  On some days it may look like a weed, but if you take the time and study one, you may see it differently.  How each outer petal grows from one center and has a unique snowflake-like edge to each one.  The inner petals that come out from the center are so numerous you would think these would be very hearty flowers.  However, each petal is so small and fragile I wonder how the center part can hold so many?  I would imitate my son and spin the dannylions around in my hand using my fingers and and try to see his beauty.  It is with each petal that forms one flower.  

It means so much more to me than a weed.  It is a symbol of what my life would envelop.  I finally understand that this flower is more beautiful than the rarest flower in all the world.

What most people take no notice of, matters more to me than words could even say.  A dannylions.  A smile.  A simple kiss.  The word mommy.  Danny was medically diagnosed at the age of 23 months of having autism (severe).  This was when autism was 1 in every 10,000.  Today autism is 1 in every 91.  In addition, Danny was later medically diagnosed with having profound mental retardation.  My son shows me his inner beauty in different ways.  The most meaningful is that of the dannylions.

This is the first time I have ever explained in depth the true meaning of the word dannylions.  It is what my life has become.  This is our first blog and I hope you enjoy it.  If this may help just one person through writing this blog, to see that things that may appear as weeds in their life may just not be...

Written with love.