Sunday, May 04, 2008

That Word, This Girl

In the lobby of the hotel there is a cluster of couches and chairs. I roll up beside them, put on my brakes and wait. Joe is gone back up to the room to get the luggage and call for the car. We stayed in the hotel because he was in too much pain to drive home. This morning he says he feels better and, in truth, his limp isn't as pronounced. I watch the morning traffic around me. People rushing with purpose out to cabs, others meeting up with big 'Good Mornings', a Mother and Daughter saying a tearful goodbye. People watching at its best.

Then a Father and a young teen with Down Syndrome come rushing by. They are back in a few seconds and Dad instructs Teen to wait on the couches as he checks out. She settles back into the softness of the cushions and, like me, watches. I glance at her and realize she hasn't seen me. Sitting still in my chair I've become a potted plant. I feel a smile flicker across my face. "So Visible, Easy to Miss" I sing to myself the first couple lines from the Cory Hart song.
The noise is heard before the frenetic activity is seen. A group of 5, seeming like 25, young teens enter the lobby as a unit, a 20 legged beast. The boys, 2 of them, are struggling to keep up with the 3 girls who talk quickly bouncing words off each other with skill and precision. The girl next to me watchs them. I watch her watch them. She looks at them with ... not envy ... maybe longing. A smile lights up her face and she leans forward with 'notice me and include me' anticipation.
Then one of the boys drops something he'd been holding in his hand. A girl scoops it up and hands it back to him saying, "Stop being so r#tarded, will you?" Then they all pounce on him laughing and teasing, the word r#tard flew around. It left their mouths aimed solidly at his self esteem, it missed the target and instead landed solidly to my left. An anticipated longing to belong became a fearful wish not to be seen, for invisibility. Hurt flooded her face. R#tard pierced her heard, her soul, her wish to live.
I was choked with anger. I wanted to cause a scene but knew that was exactly the wrong thing to do. I rolled my chair a bit forward and the movement caught her eye, she looked over at me and now I see tears, unfallen, in her eyes. I rolled my eyes and said, "What mean mouths they have." She nodded silently, startled at my presence.
I looked away. Hoping that my simple message finds its way down deep inside her. Hoping that the realization that they are simply issuing mean words from mean mouths will ... at some point comfort her. Hoping that she comes to realize that she has the power - inside - to withstand whatever comes - outside.
Her dad is back, she gets up and they walk by the group. Who notice her. She stares at the with a mixture of hostility and understanding. "She knows," I think, "she knows."
The group of teens, notice her notice them, one of the girls says, "Oh my God, I think she heard."
I'm surprised, deeply surprised, that in that voice was regret. Then the girl covers her face and runs out of the lobby, extremely upset. The other four look confused. Then 16 legs follow the missing girl down the hallway a buzz of words flying around them.
I'm relieved that they are gone. I'm drained from the anger, unspilled. But more, I feel unable and insignificant. How, how, how, how, do we get the idea that 'r#tard' is a hateful word that hurts teen girls with Down Syndrome across to those who just don't get it? Yet even girls who know better still fling it around. What do we do?
I don't know.
And not knowing what to do or how to do it - leaves me feeling inadequate. Hopeless.
By God, I hate that word.


Kei said...

Dave, do you know of Soeren Palumbo? He made waves last year when he gave a speech at school about the R word. Here's the video:

Here is the text of his speech:

Some of the news stories about his impact:

I wish everyone could understand as well as he does.

Anonymous said...

Even more shameful are my co-workers. People who work to support other people with developmental disabilites. They still throw that word around without thought while at the same time saying how much they care for those they work with.
It makes me angry, but also feel hopeless and helpless. How do we stop it?


Anonymous said...

Have you heard of the R Word Campaign?

I suggested that they create some blog "buttons" for people to put on their sidebars, and they even came up with two versions:
If it appeals to you, it would go on your sidebar like the Ouch! button.


Anonymous said...

Soeren's speech is a very good one, except he states that those with "mental handicaps" are all innocent, and unable to defend themselves.

In some ways, he continues to perpetuate stereotypes and myths!

FridaWrites said...

My grandparents still use this term for my uncle, but have never used it in a derogatory way; I'm certain he's heard it used in derogatory ways, though. When I've used "cognitively disability," some people immediately get what I mean and others don't, though this is what I'm sticking with. Developmentally delayed doesn't seem appropriate for someone over 50 who is employed, and mentally challenged?--well, we're all challenged mentally, so that seems inaccurate. I hate hearing people throw the word around like a curse and the way it objectifies. Most often, though, I find if I think about it I don't need to use a word or term unless I'm directly discussing his disability, which isn't often since he's much more than that disability.

FridaWrites said...

Clarification: my grandparents use the word "retarded," not "retard" and contributed/were active in the national association that contained "retarded" in the title, which is why I think they used it (also, the doctors used it). Anyone in my family would blow up if the noun form of it were used.

Anonymous said...

I think there is a difference, at least in historical usage, between "retard" and "retarded." I think I've only ever heard the word "retard" hurled as an insult, but "retarded" (as in "mentally retarded") has been used, at least in the past, as simply the correct and accepted term for people with intellectual disabilities.

Kei: I tried copy/pasting the link to the text of Soeren Palumbo's speech but part of the URL disappears off the side of my screen so I wasn't able to capture all of it. Can you possibly re-post the last part of it? (Or link to it, with the use of html tags, if you know how.) I'm assuming that the video has no captions; if so, that would not be accessible to me as a deaf person. Which is why I was hoping to link to the text instead.

Andrea S.
(Not Andrea of Buzzing About -- Andrea of We Can Do)

Heike Fabig said...

Yeah. We have the same thing with the word spastic. Even young people close to us have said "don't be such a spastic" and when they see my face, or remember our kids, are absolutely mortified by what they've said. They just don't think, they are speaking "teen speak" and don't even think - well, untill we pull them straight, that is.

Such an uphill battle - and it doesn't help that our service provider here in New South Wales, Australia is still called The Spastic Centre!

Thanks for the link to the buttons, qw88nb88!

Anonymous said...

I have watched that word cut through my daughter's self esteem for so long. She is 28 y.o. now but when she was only in the 1st grade she came home one day and asked me, "Mom, what does tarded mean?" Some kid at school had been "kidding" her. That is what the teacher said when I went to school that afternoon. The other child was "just kidding." And so it was excused once again, one time too many. We must teach our children better. That word needs to be considered a curse word. We must teach how much that word hurts. And we must not only teach this to our children but also to the adults in our lives. My best friend used that word just yesterday when describing something her dog did. She said, "he is such a r$#$*%" Then she saw the hurt in my eyes and immediately apologized. It is such a commonly used word that it has become a habit. Just like the infamous "N" word we have to let others know that it is UNACCEPTABLE.

Shan said...
This comment has been removed by the author.
Anonymous said...

I finally found a text copy of Soeren Palumbo's speech here:

(I'm supplying this link because the video version is inaccessible to deaf people due to the lack of captions, and I had trouble copy/pasting the link provided in Kei's comment above.)

Anonymous said...

I found the Soeren Palumbo video on Youtobe. Here is the link.......

If it doesn't work just go to You tube and search Soeren Palumbo Fremd HS Speech 2/28/07.


Amanda said...

Powerful post.

Stephanie said...

Thank you for your post, if only people had a heart and mind like yourself, the world would be a better place.

Anonymous said...

My older daughter has DS and I cannot stand the R-Word. It hurts me to the core as a parent. I know eventually it will hurt my daughter. (She is only 3) I believe the best way to combat against people using this word is to voice your unapproval of it. Express the feelings that you have when you hear the word. I believe you are successful when you get to a point where you are having a conversation with someone and they say the R-word and then they recognize what they said and you didn't do anything. I was speaking with my brother on the phone the other day and he said that word and then he paused from speaking and said "I'm so sorry I didn't mean to say that." That to me is a success.

Jeffrey Goble said...

Thank you for such a well-written post. As the father of a 9 year old girl who's Down Syndrome, I'd sure like to see this disappear. I certainly identify with the "do I make a scene?" feeling. . . one can't always be like Jesus throwing out the moneychangers from the temple, even though you'd like to.

Leticia said...

You have me with spilled tears all over my face. You see, I have a six year old daughter with Down syndrome, who would not understand the 'r word' reference. Yet.

I have for the past two years, dedicated my blogs, and my published articles to changing the culture of hotel lobbies, so that, when a teenage Christina finds herself in the company of her peers, the "r word" is as unthinkable as the "n word".

I have seven years left. I don't think it's enough time, do you?

Crittle said...

That post had tears welling up in my eyes. My daughter is 1 and also has Ds. We have to do better, as a socitety.

Would you mind if I used/linked to this in my blog?

Courtney said...

Hi all. I am a regular education teacher, however I do have a masters in special education. The reason I have my masters is because of a special girl in my life lives with downe syndrome. She has changed me life. I do not allow my students and friends to use the "r" word around me. When my students use it at first I explain why it offends me and why they should not use it. For the past 5 or so years I have seen a huge change in my students language. I have even heard them (not realizing I am near and listening) correct and explain to other children why it is not nice or right to use this work. All this time I thought I was the only one who was so bothered by it. Lately I have been thinking that I was over reacting and I should get over it, it is just an expression.. now I am glad to find out that I am not the only one who feels this way. Thank you for this story!

Anonymous said...

hiya there.

this story means alot to me as i have a severelly dissabled child. she is 19 months and can barely do anything for herself. i have heard the R word cursed about so much and it hurts me to hear it. another phrase i have heard cursed about is window licker aswell. i was sat in my town where there were people walking up and down the hing street. i was sat on a bench with my daughter in her buggy when a DS woman (she looked about 30) walked past a bloke with his young son and he said to his son "dont go near her son shes a r*etard the sun the replied whats that daddy to which he replied a window licker son he the laughed and they both started walking off. i then got up and caught him up and said exuse me sir can i have a word. he said yeh whats up. i then said what hope have our children got when your saying things like that to your son. it made me so mad that he could even throw words like that around with no consideration for anyone else. i then turned to the boy and asked what was wrong with that woman?? the boy then said she was a retard and a window licker. i said no she isnt he said oh yea well daddy said she is. i then said to him well your daddys a very nasty ma because theres nothing wrong with that woman shes just a very special woman and she would never do anything to hurt anyone so dont let other people make you think otherwide. the father laughed at me but the boy looked disgusted at his father and said why did you say that daddy if she is just special why be so mean.

i then felt my job was done and walked in the opposite direction with a smile on my face.

sorry if this offends anyone but i think some people can be very inconsiderate and some of the time its the parents fault that we cant let our special kids play with the other kids from school as our children dont understand the difference of nasy and nice.

thanx for taking the time to read this.

Anonymous said...

I am a thirty-seven year old woman with cerebral palsy and a very high IQ. I endured verbal abuse and yelling from my parents for years. My siblings freely tossed around the r-word to taunt me. Between that, and the botched surgeries, being locked in school storage rooms, and being confined to a mental institution at the age of 5 for a year and a half, (I had that rubbed in my face too!), let's just say that my psychiatrist will have many hours of gainful employment with me for the foreseeable future.

It was when my father started screaming at me for not recovering from surgery fast enough that I finally had enough and moved out without my parents' blessing or consent....and they're still cheesed about it. I developed chronic pain from that surgery, and after waiting for years to get into a pain clinic and proper housing. I turned to my parents for help.

They had me sign a power of attorney. They said they needed it. Then I received a phone call from MY case manager. She said my parents had remarked: "It is a lot easier to get our daughter to do things when she is in pain."

They had insisted on my signing those forms even though I was in severe pain and told them so. (They live 5 hours away by car). I was in so much pain I could barely write, never mind read what I was signing.

When I found out about my parents' remarks, I told my workers not to give them any more information. My father then phoned and demanded that I give back that permission, and he really leaned on me. I didn't give it.

I then got a nasty e-mail from my mother and she told me that I was out of the family. And then I discovered from my "team" that my parents were trying to have me institutionalized and brought back to their part of the country and against my will. They tried to have me declared incompetant.

My parents had also been providing me with financial support recently, which was yanked when I wouldn't go along with them like a good little c------. (My mother was a nurse and my father was a newspaper editor and they liked tossing around offensive words too.

The reaction of my care team has varied from bewilderment and shock (my case manager) to open laughter (my psychiatrist.) As for me, my depression has gone into freefall.

It has been the worst summer of my life. My parents have pleaded burnout. All they've done for the past 15 years has been show up down here to put in and remove the air conditioner and buy a few supplies. No phone calls, no letters.

My parents always gave birthday and Christmas presents, but growing up, I was counting the days when yelling DIDN'T happen. And that has left its' mark. I have spent years in near total isolation. I was brought into the Catholic Church as the result of a prominent mercy killing case. (I met a Catholic who was the only one not praising the murderer of a disabled child.)

My friends are working hard to break that isolation, but I will carry the damage of the yelling and other things to my grave.

It didn't have to happen. I can only imagine what my life would have been if I were treated as a daughter by my family and not a liability to be thrown away like radioactive waste. (Nor was I the first family member with cerebral palsy put away.)

When a person with a disability is killed "out of mercy" or kills himself, much is made of the person's suffering, which seems to justify the killing in the eyes of the public, the media and the courts. What few realize is that much of that suffering and the worst of it comes not from the disability, but from the actions (or inaction) of man. That is fixable. And at the rate they are going, I will be enjoying equal civil rights when my great grand nephew is going to university. (We PWDs are all eunuchs, don't you know?)

Yes, things have gotten better for PWDs, but how far have we really come when a friend can tell you: "'People should thank God they aren't like you?'" Or when someone can walk up to a historian in a wheelchair and say: "'If I were you, I'd kill myself?'"

This are not statements made by people who "mean well". These are the sorts of remarks that can lead to someone getting punched! :) And able-bodied people don't get that! And each such remark leaves its' mark on the individual involved and on anyone who has a disability, or their friends and family.

My own parents were the ones leaving the marks on me. I figured my parents had to learn how to "treat" their daughter with a disability.

I am an author who is too terrified to write my own autobiography. Pride is not something I feel when I think of my past, and my past has been something that I have tried hard to forget since the day I was born.

Forgive me for being 30 years behind my compatriots with disabilities. I want to thank you for speaking out.

Anonymous said...

That a really powerful story. I'm a student in the healthcare sector, and so i seen a lot of disabilities around. This is really sad to hear. But i think we need more than just changing our language. It's about being educated about the disabilities, knowing what they really are instead of what we see on the surface. It's important that we see their potential and not what they cannot do. If we only change our language because we're afraid of affecting them, i think we're not moving forward as a society to better include them. We need to try to at least understand their situation, and have faith in them.

Claire said...

That was a wonderful, insightful story & lesson. I appreciate reading it.