My Brother’s Courage

Independent Living, Parents, People with Disabilities, Siblings 11 Comments »
Billy Schulz Shovels Snow for His Mother

Billy Schulz Shovels Snow for His Mother

The bad weather we have had recently requires determination and courage and extra hard work for many of us. Billy’s service to me inspired his sister, Mary de Wit, to compose this poem for us.

My Brother’s Courage

My brother’s courage grips my heart these ways:
He concentrates on lacing tight his boots,
Assembles hat and gloves and arctic suit,
And with resolve, he steps into the haze.
His mission is to fetch the frozen news,
(This, after warming Mother’s shoulder pad,
Insuring she her phone and coffee had.)
He, cautiously, his icy way pursues.
His life is full of fear. Afraid to fall
On snow — or tumbling from a vista deck—
Offending, being dumb, bouncing a check…
Still every day he faces: smiling, tall.
From his perspective he might call us this:
Retarded, learning slowly who he is.

© 2011 Mary de Wit

Good News!

Advocate, Community Participation, Disability, Down Syndrome, Education, Inspiration, Siblings No Comments »
Jane and Billy Schulz heard good news about Rosa's Law.

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?

Revision of the "R" Word

Advocate, Community Participation, Disability 3 Comments »

There is a tremendous movement among individuals and interested groups to eliminate the words “retarded” and “retardation” from our vocabularies. The term “retard” has been designated by disability-rights advocates as hate speech and has been compared with racial, ethnic, and sexual epithets used by majority groups to target and humiliate minority groups.

A bipartisan bill enacted in the state of Maryland and recently introduced to the U. S. Senate would substitute the stigmatizing terms “mentally retarded” and “mental retardation” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. This change would not alter the eligibility requirements for services and supports. The Chief Executive Officer of The Arc, an organization that advocates on behalf of people with intellectual and related developmental disabilities, supports this bill. He states that “how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.” Introduced as “Rosa’s Law,” this is only the first step in a lengthy process towards enactment. But it is a step.

My major stance is that the word is not the problem. Kris Kristofferson sings that “everybody’s gotta have somebody to look down on, who they can feel better than anytime they please.” So if this particular word (retarded) is rejected, other words will take its place. Did you know that “retarded” replaced “moron,” imbecile” and “idiot?” The term “Down syndrome” replaced “Mongolian idiot,” and so on. The basic issue is turning the “R” word into “respect.”
How can we do that?

Read the blog about Billy’s employment. Read Embry Burrus’ comment on How Different is Different? Attitudes ARE changing. We all must be advocates, confronting people who make disparaging remarks, spreading the word that calling someone “retarded” is not acceptable. I think the best approach, however, relates to Embry’s comment. Introduce our family members and friends who have disabilities to others; see that they are involved in the community. Insist that they are respected – the better “R” word.

View Kristofferson’s Video here.

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