March 6, 2013 is designated “Stop the ‘R’ Word day. If you go to their website they have many ideas for activities and actions. If we each do one thing, we can make a difference for the future of our children. Please share your thoughts and actions in the comments.
David Hinsburger and the “R” word.
David Hinsburger is an award-winning author and advocate for people with disabilities. His article titled: The People who “ARE” the “R” Word is a must read classic for anyone who doesn’t understand what the fuss is all about.
Sticks and Stones and names hurt
My Letter to a Major Blogger
As promised in my post “Definitions of “Retarded”, this is the letter I wrote to a major blogger when he used the words “retarded” and “idiot” in one of his posts. It is edited for this post.
I have followed your blog ____ for a long time and enjoy your stories, ideas and writing style. However, I have issues with your use of the words: “retarded, idiot, moron and imbecile.”
You have made strong statements about using whatever words you want–even if they offend people and hit their hot buttons.
You can use words like “idiot, moron, imbecile, crip, tard…,” but why?
I agree this is America and defend your right to freedom of speech. I agree people who find these words offensive can just unsubscribe. But… you are a smart and thoughtful person. Why would you want to purposely offend vulnerable people?
I would rather believe you don’t understand how much these words hurt.
Mental Retardation–two words that matter.
My son has the label of “mental retardation” now called an “intellectual disability.” Because of those two words, he was not allowed to go to public school.
Because of those two words we had to spend three years in court, costing thousands of dollars. We, along with other parents, had to prove our children were human and had the right to “life, liberty and the pursuit of happiness.” We had to prove in court that our son would benefit from being around other people and his mere presence on the school grounds would not harm other children. Because of those two words he was not allowed to participate in swimming lessons with the other kids in our neighborhood PUBLIC park. Because of those two words our family has been refused to be served in a restaurant and a Doctor refused to have our son for a patient…need I go on?
Just a generation ago, because of those two words, people were treated as animals instead of humans. They were sterilized, given doses of radioactive materials in their oatmeal. They were taken from their families (“for their own good”) and warehoused in inhuman institutions. Some were not given clothes and had to sleep on straw. They were denied even the most basic human rights–all because one psychologist in one situation gave them one test and labeled them those two words.
Most history books have made people with disabilities invisible. So, you probably aren’t aware, but the words: “moron, idiot and imbecile” came straight from the medical manuals of less than 40 years ago.
There are still churches which will not allow people with the label of those two words to marry, some churches do not even allow “those” children to attend their services or receive the sacraments. Many private schools and churches legally still segregate and discriminate against our children with those two words.
There are many normal couples who joyfully want a baby–until they hear those two words, and then immediately abort. There are Baby Doe cases where if the baby has Down syndrome and is assumed to have mental retardation, the family refuses to take the baby home from the hospital and refuses to allow the baby to have food. There are cases of “wrongful birth” where the parents sue the Doctors for allowing their child with “mental retardation” for being born.
In 2012 we can add the case of baby Amelia Riveria who was refused a transplant because she had an intellectual disability. The hospital has recently apologized.
“Mental Retardation, retard, retarded” are not funny words”
In Ohio, the state legislature passed a bill in 2009 to remove the words “Mental Retardation” from state agencies and its documents. This was the work of numerous advocates and thousands of hours of public hearings.
This is a civil rights movement where we are fighting for the right of our children to live, work and recreate in the community. The right to be seen as human beings and citizens of this great country.
Sticks and Stones … and words can hurt.
When a label carries enough stigma that the label alone can cause discrimination–the label is a problem.
The civil rights movement of the 60’s laid the ground work for Sec. 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act…. and our civil rights legislation, The American with Disabilities Act (1990). If you look at the closing statements in Brown vs. Board of Education (1954) you will see the school district’s argument, (paraphrased) “If you let negro children in the public schools, the next thing you know the school will have to educate retarded children and Indians.”
In 2012, our children have the right to go to public schools, and restaurants cannot refuse to serve us, or ask us to leave because they don’t like “the way we look”.
This is NOT ancient history. This is NOT some group of radical parents and advocates who just want people to be politically correct.
Churches, non-public schools and organizations can still discriminate and decide who they allow in their churches but because so many of our children are going to school and living with their families in the communities, there is not the fear that once existed. And the medical professionals have dramatically changed their low expectations and acknowledge the limits of the IQ test and other measures they used to label people.
Sure this came about because of civil rights court cases and federal legislation, but mostly it happened as decent people decided to give people who were different a chance. I know it is unpopular to say that the Federal Government and Laws are important. Many people say there is too much government. I wish there was more protections and enforcement for vulnerable people.
Challenge to Bloggers
My challenge to all bloggers is:
Will you take cheap shots and continue hateful language which hurts people? Or, will you use respectful language and recognize people with intellectual disabilities are people and at least give us all a chance to build a better world.
Words have power. You have power.
Will you use your power to continue to hurt people, or for change?
I know you didn’t mean to hurt anyone, but for those of us (like me) who have children with IQs below 50, children who were labeled “idiots” by our Doctors and medical professionals and who are struggling every day to try and make a better life for our children, the words: “retarded, idiot, moron, imbecile” are downright offensive. So forgive me that I rant today instead of ignoring it.
I know the words are used everywhere and people aren’t particularly trying to hurt people with intellectual disabilities but I would appreciate your consideration.
The blogger I sent this letter to agreed to not use the offensive language only asking that he remain anonymous. I consider that a victory for all of us, and it has made me a loyal fan.
Rosa’s Law was passed and signed by President Obama in 2009 to use People First language in all Federal documents. Love, NOT Labels| Rosa’s Law
I am hoping other bloggers will take up the challenge and use People First language and the words “intellectual disability” in a respectful way.
This is a fresh start. We can do it right this time.
What about you?
Will you take the challenge to remove the “R” word and other hurtful words from your vocabulary?
Tale of Two Brothers: Sibs of People with Disabilities
Tommy and Aaron hiking in Smokies
It was the best of times and the worst of times. (Sorry, couldn’t resist.)
All boys and girls grow up into adults. If the statistics are correct that one in 88 children now have the label of autism–that’s a lot of brothers and sisters.
The cute little brothers on the hiking trail grow into … what?
Can the brothers and sisters of people with disabilities, including autism, stay close and involved in their sibling’s life? How does it change over time? Can anyone have a “normal” life?
When we first suspected something was wrong with Aaron we went to the neurologist and began tests. We told him we were thinking of having a second child and he said, “Great, Aaron would love to have a brother or sister.” The tests took 6 months and fortunately for us, we were already pregnant when the neurologist told us Aaron would, “always be in special schools.” (which was his way of saying Aaron had cerebral palsy and was severely retarded–though we didn’t know what he meant.) Tommy is 18 months younger than Aaron who later added autism to his list of neurological labels.
I can’t imagine our lives without Tommy. I think God knew our family needed him to help us get through the rough spots. He is a very thoughtful quiet guy, who is one of the most caring people on the planet. He is also a terrific problem solver and continues to be such a source of joy and support to Aaron and all of us.
In this picture (Aaron 10 yrs) and Tommy (10 yrs) pose on one of the hiking trails in the Great Smoky Mountains. Sometimes our whole family would go on the hikes, sometimes Tommy and his dad, Tom, would go and spend a couple nights on the trail while Aaron and I stayed in the basecamp.
Thankfully Aaron let me use him for an excuse so I wouldn’t have to hike 10 miles up the mountain, sleep on the ground worrying about bears, and shovel the … you know. Sometimes it was just Aaron and me roughing it in the camper with running water and toilets that flushed. Sometimes my dad or sister Janet joined us at basecamp. It was always a great family adventure (click here).
Tommy has always been involved in Aaron’s life. Until he went to college, they went to school together and were involved in some extra curricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life if it was cheering at his baseball games, watching him play video games or build stereo speakers….
In the last several years Tommy’s job, as a radio frequency engineer, has taken him to South Carolina, North Carolina, Pennsylvania, Virginia and D.C. (Did I mention he was in charge of setting up the cell phone operations for Nascar and the Super Bowl?) 🙂
He recently moved his family back to Cincinnati and is now living between Aaron’s house and our house so we get to see his family almost every week.
Because Tommy has grown up with Aaron, he knows what Aaron likes and dislikes–sometimes even better than mom.
Aaron pusing Isabella in stroller
Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year) was climbing on Aaron and making him laugh.
Dignity of Risk
Tommy is now an adult who understands the “dignity of risk” (click here)and lets Aaron share his life with his family. Notice that while Aaron is pushing Isabella in the stroller, Tommy is hiding in the bushes making sure everything is okay.
Aaron can independently push Isabella and talk to her (why she was looking at him). He is using his skills. But Tommy is close by. Isabella enjoys her ride with Uncle Aaron and is safe.
I could not have planned for this special moment. I did not have a lesson plan or task analysis. Tommy just figured it out.
What a great brother.
LIFE IS GOOD!
I want to share two stories about brothers and sisters of people with disabilities that have been in the news.
Sister “Deebah” makes a video about her brother
The first video is by Brooke May, a young girl who has a brother Jonathan, with the label of Down syndrome. Let me know your thoughts in the comments, but I see a loving relationship and a sister who reminds me of Tommy.
Time magazine article by Noah’s Brother
The second story is an article in Time by the author of Boy Alone: A brother’s memoir (Harper). It is written by Karl Taro Greenfeld who’s father wrote the famous book, A Child Called Noah. It is fascinating to follow this family’s journey into the second generation and the adult world. This article points out some of Noah’s history and does not have the miracle ending we all wish. It suggests the way to survive is to live in the present. It also hints at some of the experiences the author experienced in the past and now in his role as advocate and caregiver for his brother. It is a sober message. Again, please share your comments below.
I remember reading an article where one brother of a person with a severe disability said, “Growing up was like being an only child, with a brother.” When I asked Tommy about this, he was very thoughtful and just nodded.
What do you think? Do you have any stories about brothers and sisters?
In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2017.
Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.
‘Tis a Season of Magic
Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.
Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.
Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.
Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.
My friend Snoopi is the same Snoopi you know on Facebook.
Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.
I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.
In summary, programming Dectalk is my favorite thing to do. Blake
More information about Blake and Snoopi:
If you would like to contact Blake Roberts go to: email@example.com
If you would like to contact Snoopi Botten email Snoopi at firstname.lastname@example.org.
The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.
Keep Climbing and Singing: Onward and Upward
All my best,
What do you hear? See? Think? Want to discuss?
What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?
For anyone who buys gifts for a person with autism or a disability, here is a fun twist on the classic poem which shares some of the reasons it is so difficult to find the perfect gift.
Cindy Waeltermann, is the founder of AutismLink and gives us permission to reprint her poem on behalf of her two children who are adults with autism.
Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
But what they don’t know
And what they don’t see
Is the joy that we feel
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….
Thanks to Trish Doerrler, a parent of a child with autism, for sharing this poem on her blog In so many words.
Hope you all have a fantastic Holiday, with lots of precious moments.
Aaron’s Favorite Gifts
This year we are getting Aaron a tape/CD player because Aaron thinks listening to music is an active sport. He loves putting the tapes (yes, tapes) in and out. We can find tapes in used book stores. They are usually pretty cheap, but that is great because then when they only last a couple days, they can be replaced. The hardest part will be to get the staff to understand the batteries are rechargable and should not be thrown out.
Aaron also likes to lick and flip baseball cards. He especially likes the ones with cheerleaders:)
I wish we had a longer list. He really isn’t impressed with new shirts and underwear.
Keep Climbing: Onward and Upward.
All my best,
Which gifts work for your child? especially adults with autism or other disabilities? Are the gifts age-appropriate?