Mommaday: Dear new Momma…

The Quail

Dear New Momma,

 When I heard of your worry over the diagnosis your upcoming baby has received; that they may have Down syndrome and that you are scared,  I had a lot of things to say about the history of people with disabilities and the injustices they have endured throughout time. This morning when I woke up thinking about you again and your worries, I realized this was not the time to try to educate you on the world of disability. I say this as a person who has known and loved people with disabilities my entire life, family members, people in school, people in my jobs and fortunately now my sweet girl. The time will come when you are seeking that history on behalf of the child you know and love in order to be a strong advocate for him. But for now- now is not the time for you to gear up for that. You will know when that time comes. You have already advocated for your baby in the best way you can- by choosing to have him. It is a brave choice. You are having a sweet baby- a baby you will be a better person for having and knowing. Stand with us and let us guide you. Get to know us and the real stories of the real children who have Down syndrome that we raise every day of our lives- do not let others you don’t know fill your head with stereotypes that are born out of their sorrow, their guilt or their ignorance. Those of us in this forum, we have made the choice that you are making. Whether we had a pre-natal diagnosis or not- we’ve chosen to mother our children. No one can tell you what your child will be capable of- but I promise you- your child will know you, will love you, will want to please you, will achieve milestones. He will bring you great joy and you will be continually amazed by the tiniest and grandest things he does. You will get more out of your child by ten-fold then what you put in to him. Maybe a year from now, you will want to know the history, the culture, the great people and forces that have brought the world of disability into a strong place in our world- a place where we have the right to expect equal rights for every human being- regardless of ability. We will be here to help you with that when the time comes. The people who will stand with you and your child- they are strong and good and kind and intelligent and ready when you need them.

For now, you have a sweet baby in you who already loves you enough to make his way here. Turn your back on those naysayers. They are going to do nothing but needlessly upset you- and I promise you their information is not born out of fact and reality- it is born out of fear and a need to justify choices they made—it has nothing to do with you and your baby. They do not know what your child will be capable of. Any child presents struggles, challenges and more blessings then you deserve.

ANY. CHILD.

EVERY CHILD deserves someone who believes in them, and for your baby- that’s you Momma. It’s your calling- embrace it. Soon you’ll embrace him. The Down syndrome will not be his biggest struggle, other people’s ignorance will be.

Love,

another momma

PS: This letter was written for a very specific someone who was struggling with other’s scare-tactics around her decision to continue her pregnancy after having received a diagnosis that her baby has Down syndrome. If you find yourself in that same situation- know that this letter is for you as well. You can also go here and here for more support, love and information. We’re here for you too. 

Today is World Down syndrome Awareness Day. 3/21; as in 3 copies of that 21st Chromosome. Today is a day we celebrate our beloveds and shout about it from rooftops. If you or someone you love has Down syndrome- well; you are just blessed. Blessed like our sweet family.

I know better…

 

 

We’ve talked about this before. Today is a day to spread awareness about the need to rid your vocabulary of the R-word. You can click on the picture above to sign a pledge to stop using that word.

Last year I wrote this:

“But sadly, in our world, in this day, those everyday situations (calling someone a ret@rd) can befall horrible outcomes. Not everyone respects people’s dignity of risk or frankly- human life. Some people spend their time making others who have worked so hard to be a part of the community, to be accepted, to at least be allowed to live in peace, live a nightmare- at best. As a mother I hear about these stories and I want to take both of my children in my arms and never let anyone talk to them without first going through a battery of testing of my own. The fear eats at me. The worry of what I can do to prevent any harm befalling anyone tugs at my soul. Why anyone would insist that their right to call someone a ret@rd is more of a priority than the person on the receiving end’s dignity is beyond me. Just because we have the right to say what we want doesn’t mean we have to. I will never understand people defending their right to be mean. It’s one thing for someone to make a mistake, realize it, apologize and learn from it. We’re all human. It’s a diagnosable personality disorder to defend the right to hurt others.

The critics and trolls insist that as parents and advocates asking you to please remove this slang from your vocabulary is petty, politically correct and  an overstatement of the issue at hand. I would say the extinction of Ernie Hernandez Jr’s life is a sad statement to the seriousness of the issue.

Our world is changing though. It’s this fact that restores my faith. The world understands now that people who clinically have the diagnosis of mental retardation can learn. They may learn differently, but they do learn. The term retardation when used appropriately isn’t the issue. The issue is that a wide sect of people use it to degrade others and then defend their right to be ignorant about it. The issue is so significant that even the medical community has decided to step in and revise their language. The correct term in the DSM-V will be Intellectual Disability.

We can all learn, if we are willing. As a friend, a community member, as a co-worker, as a family member, as a fellow human being I am telling you it gives me pause when you say ret@rd in reference to something you did that you think was stupid. I know you may not have thought about it before. I know you may not have had any reason to question it. Everyone says it right?

Well give me a few minutes of your time and open your hearts and mind and take the opportunity to learn about the history of people diagnosed with mental retardation. Read this. Know the struggles that have been faced and won, and those that still exist. If you still disagree about the significance of the R word, that’s fine. Just don’t use it around me or my family. That’s at least a start.”

This year, I still feel the same. I still champion the cause of equal rights and respect for all people. This year though…I know betterCourtney’s words, are often funny, silly, heart-wrenching and frankly one of the high-lights of my day. Her words last year on March 1, 2010, well somehow I missed them then. But I hear them now. I feel them in my heart. They empower me, to empower my little birds.

I’m not a confrontational person. I know I can’t change how someone else behaves. I can only choose how I respond and in doing so set an example for the two little sponges who watch me like a hawk to see how they should behave in this world of ours. It starts there. It starts in your heart. It starts at home. It starts in your community.

It’s awareness. Once you have it- you can’t go back. Once you know my child, she becomes the example you have for a particular image or term. She gives you a reason to want to change your mind and know more. She breaks your stereotype. She gives you pause. She causes you to think. Once you know her, truly know her, you won’t make a second mistake of underestimating her and writing her off. Because she’s watching. She’s listening. She’s learning. Just.Like.You.Do.

Respect her and she’ll respect you. Spread the word to end the word. Just don’t say it. It’s that simple.

I know better. And so does the Quail. And so does everyone who knows and loves her.

Mommaday: Lessons I’m working on learning

So the other day I was catching up on reading Dave Hingsburger. I know, I know- I’ve said before just how much I like the guy and how much I appreciate his advocacy; just how much I have learned and continue to learn from him. I’m repeatedly amazed at how simple and profound his thoughts make the world appear when I find myself agonizingly inarticulate over similar issues.

Here’s the thing- The examples he gave in this post- I was fortunate. I won’t say I never did the things he did as a caregiver- I’m sure I did. But I also had the blessing of his wisdom back then. I had so many teachers reminding me to listen to and respect the words, thoughts and actions of a person with a disability. It was my job as a caregiver to hear them and to help them navigate their world in their own way. There is one thought that sticks with me, and I apologize that I can’t remember who to give the credit too- but there was a time when I worked with people with fairly profound disabilities on a daily basis. We worked to teach them daily living skills. How to unload the dishwasher, dress themselves, shop for themselves, feed themselves. I remember someone wise interjecting during a weekend caregiving stint, that just because someone can do something, doesn’t mean you have to make a lesson of it every single time. Sometimes, it’s nice to have someone get you your cup of coffee. It doesn’t mean you weren’t capable and need to prove that you are learning every single time.

Where am I going with this? Especially since it seems to be the opposite of Dave’s point? That the point is to learn to listen to people. To every person. To put aside the soundtrack in your head of what you think someone should or could do and notice them today.

All people- and here’s the light that just flipped on as I was reading Dave; including the people that aren’t labeled as “disabled”. I’m outing myself here. Sometimes, I’m hyper-critical of Zuzu. Not here, but in the moment, when she’s having a hard time and not behaving like how I think she should behave in a given situation. I rationalize, well she’s new to this earth. She needs me to instruct her. She needs me to tell her we are going to storytime now, because that’s when it is scheduled and you’ll just have to be able to sit still and listen to the nice lady like all the other kids because that’s where good parents take their kids. Even though I see the energy practically bursting out of her. I see that she wants to run and play and not have to answer to anyone at this moment.

I’m still reflecting on this. I’m not suggesting parents don’t owe it to their children to instruct them. I know we do, but we also owe it to our children to let them be who they are. The difference is when the Quail hollers and screams at me and knocks her carefully prepared food off of her plate- I tell her no, but later I will reflect on her strength, her ability to have an opinion and her ability to communicate it so clearly. I make my focus to try to offer a choice next time so she can choose what she wants. I work on the sign for eat and for drink- so next time she wants one or the other she has an easier way to get her point across. Because she has a disability- I expect to have to slow down and learn to work with her, because of how I’ve been trained. Because of this training I know she’ll get there. I tend to not make overarching generalizations about what it means about her capacity and what kind of person she’ll be or what kind of trouble she’ll have or whether or not she’ll grow up to be a doctor some day or not. I know to wait and listen to her and let her find her voice.

I don’t always give Zuzu that same wide girth. If she does the very same action, more often than not, my response is to despair something along the lines of, “Oh no! Not again, you know better than to do that!” And then put her in time out and then later scan my ever-growing library of discipline books for the latest technique to “manage her behavior”.

And don’t get me wrong- I’m not talking about the age dependant biggies here- The Quail- she bites me- she goes to time out. She hits, she gets told no hitting, be gentle and shown how to use her little hand. The next meal we try to be a little more prompt about introducing the choices before she’s so far gone she’d eat her own arm to get a bite of dinner.

But Zuzu, sometimes I forget she is just a little kid. She’s so grown up in so many ways and is the first to tell me what she knows and correct what I think I know. Sometimes I think she should already know more than she does. 

Dave says, “Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?”

It’s not too much to ask Dave. Sometimes we all need reminders. Sometimes we are better about remembering the lesson with some and not others. The listening I think comes easier to me with the Quail than it does with anyone else in my life. Probably because I’ve had so  much practice and lessons on listening to those with disabilities. I guess in some ways I do still group her as having a disability by affording her actions more respect than I do other people’s. I guess what I realize now- is that it’s really time for that lesson to sink in and generalize a bit. If I’m really going to treat people with disabilities with the respect I afford others- then I need to remember to treat others with the respect I afford those with disabilities.  I need to really get the
message that we are all more like than different.

Thank goodness children are pretty darn forgiving.

Quailday: another kind of happily ever after…

Do you know Dave Hingsberger?

He’s a strong advocate and friend to a lot of us that find our lives touched by the world of disability. He’s compassionate, thoughtful and quickly analytical. He gets the struggles that sometimes seem inherent in the lives of those that are marginalized by their communities. I had the good fortune of hearing him speak many moons ago as a young social work intern learning my way in the field of disability advocacy. His words touched my heart and stayed with me even though I only saw him a few times and so very long ago.

Shortly after the Quail was born and I found myself repeatedly googling disability issues and reacquainting myself with our modern-day heroes and advocates. I found out that Dave makes himself a willing and daily member and advocate of our community via his blog. What good fortune! What wisdom. I feel so blessed to live in a world where technology has enabled me to have access to wisdom and support at all hours of the day.  Particularly on sleepless nights when my mind is in a race with my heart to beat out worry.

A couple of months ago Dave took fingers to the keyboard to convey the unconventional wisdom found in an ordinary everyday situation- a mom and her teenage son dickering about his right to be independent on a daily basis. His right to the dignity of risk. Years ago, as a young whippersnapper of a social worker living in a liberal community,  I would have read this story, and been rallying around that young teenager. Of course he should get to go get his food in the mall without an escort. It’s the mall, he’s a teenager, teenagers hang at the mall all of the time without befalling dire consequences. Right? Having a disability shouldn’t mean you have to be escorted everywhere.

But sadly, in our world, in this day, those everyday situations can befall horrible outcomes. Not everyone respects people’s dignity of risk or frankly- human life. Some people spend their time making others who have worked so hard to be a part of the community, to be accepted, to at least be allowed to live in peace, live a nightmare- at best. As a mother I hear about these stories and I want to take both of my children in my arms and never let anyone talk to them without first going through a battery of testing of my own. The fear eats at me. The worry of what I can do to prevent any harm befalling anyone tugs at my soul. Why anyone would insist that their right to call someone a ret@rd is more of a priority than the person on the receiving end’s dignity is beyond me. Just because we have the right to say what we want doesn’t mean we have to. I will never understand people defending their right to be mean. It’s one thing for someone to make a mistake, realize it, apologize and learn from it. We’re all human. It’s a diagnosable personality disorder to defend the right to hurt others.

The critics and trolls insist that as parents and advocates asking you to please remove this slang from your vocabulary is petty, politically correct and  an overstatement of the issue at hand. I would say the extinction of Ernie Hernandez Jr’s life is a sad statement to the seriousness of the issue.

Our world is changing though. It’s this fact that restores my faith. The world understands now that people who clinically have the diagnosis of mental retardation can learn. They may learn differently, but they do learn. The term retardation when used appropriately isn’t the issue. The issue is that a wide sect of people use it to degrade others and then defend their right to be ignorant about it. The issue is so significant that even the medical community has decided to step in and revise their language. The correct term in the DSM-V will be intellectual disability.

We can all learn, if we are willing. As a friend, a community member, as a co-worker, as a family member, as a fellow human being I am telling you it gives me pause when you say ret@rd in reference to something you did that you think was stupid. I know you may not have thought about it before. I know you may not have had any reason to question it. Everyone says it right?

Well give me a few minutes of your time and open your hearts and mind and take the opportunity to learn about the history of people diagnosed with mental retardation. Read this. Know the struggles that have been faced and won, and those that still exist. If you still disagree about the significance of the R word, that’s fine. Just as a friend- please don’t use it around me or my family. That’s at least a start.

And as to that teenager and his mother; well, let me commend her and her brave heart. She listened to her son. As a social worker and disability advocate I had no doubts about his rights. As a momma to a sweet Quail making her world in her community, I stand guard to the harm that may befall her one day. And hopefully, one day, I’ll be as brave as that Momma to know when it’s time to let her fly. With the wisdom of folks like Dave, I’m sure I’ll stay the course.

Our language frames how we think about others. Help eliminate the R-word from everyday speech. Won’t you please join me in taking the pledge to end the R word?

corner view: Earth Day

 

Happy Earth Day friends! Let’s make a deal- We’ll do what we can and you do what you can to preserve this lovely home of ours! It’s never too early to start!

Check out Celebrations all around our groovy globe:

jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,

Fave-O-Lit Friday: Oz Squad

Dear friends & family;

With the recent onslaught of media coverage surrounding the word retard. Sarah Palin has unwittingly become the Momma Bear defender of all children with Down syndrome. It is important to our families that she be educated in disability history and why it is important that she not politicize THIS particular issue. It is important that she use her public platform to defend people disabilities and help others who will listen to her undrestand that the word retard hurts all of us deeply. That it doesn’t matter who you are, please do not use this word and please understand that it hurts our precious children when you do.

I belong to an advocacy group that works to educate people about Down syndrome. We are sending an open letter to Mrs. Palin- a non-partisan one…- to help her understand how important it is that NO ONE be allowed to use the word & that when she speaks, she represents all of our families and and our children that have Down syndrome regardless of politics because she is such a public figure. Please come join us in reaching out to her by signing our letter.

Thanks so much for your help!

http://ozsquad.blogspot.com/2010/02/dear-sarah.html

Fave-O-Lit Friday

 

Dear Mrs. Palin, It’s not ok for anybody to use the R word. Your dear friend Rush included. I know you know this. Please don’t let politics affect your ability to defend your dear little one. Spread the word to end the word Mrs. Palin. Use your power for good. Sincerely, This Momma

PS: I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities