Spread The Word To End The Word

Wednesday March 7, 2018 is “End The Word Day” so I thought I should share this post from 2014 for anyone who isn’t familiar with the “Spread the Word to End the Word” movement.  To learn more about the movement, visit their website here,

I hope you will join me in taking the pledge:

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.

Anna G & Anna C

Anna G & Anna C

About two years ago, I made a frustrating mistake, nothing big but one that would create extra work for me. In the moment, I said something out loud, without thinking. Thankfully, there was only one person around to hear my shocking word choice.

“I can’t believe I just did that,” I said. “I’m such a retard.”

The expression on my team member’s face is what made me realize what I had said, as she looked at me with disgust and disappointment. And then, my mind went immediately to the precious faces of the people I love so much and their families. I was instantly ashamed. How could I, of all people, have used that word? And even though I didn’t say it with malice, how hurt would they all be if they knew I had used it?

I was born in 1960 and have lived in Alabama all my life. The “N” word wasn’t part of my family’s vocabulary but I heard it, all the time, all around me. The first time I remember understanding that the “N” word was horrible and hurtful was when I was nine and someone I knew used the word in front of an African-American woman who was a guest in our home. I will never forget the look on the woman’s face … the look of humiliation and silent outrage and hurt. Even though I was only a child and was being raised in the Deep South during the height of the Civil Rights Movement, I grasped the implications of that word because I saw the effect it had on the face of a woman I knew.

The “R” word is every bit as hateful and as hurtful as the “n” word, is every bit as derogatory and pejorative as any ethnic or racial slur people invoke. The definition of “retarded” is: less advanced in mental, physical or social development than is usual for one’s age. The “R” word used to be a medical diagnosis but today, the medical community uses “intellectual disability” and the “R” word has become a convenient slang, something people use to describe others or actions in a deprecatory way. This needs to stop … like yesterday.

When our mothers told us, “Sticks and stones can break your bones but words can never hurt you,” they were just trying to make us feel better. We all know that many times, words hurt even more than punches. You’re so gay; you’re such a Jew; how ghetto is that; you’re so retarded … sure, they’re just words but when used in that context, they are words meant to imply inferiority and insult, words that are used with the intent to throw a punch more powerful than a fist.

Shauna painting in The Connection

Shauna painting in The Connection

Last week, I asked one of the girls in Project UP a question. She looked at me with panic as she frantically searched her mind for the answer. I gave her a hint and when she remembered it, her face was flooded with relief. Because she is intellectually disabled, it is difficult for her to process information as quickly as I can. She has to work ten times harder than I do just to answer a question … or write her name … or say the alphabet. This doesn’t make her dumb or stupid or inferior; it actually makes her smarter than me because she has adapted to her disability by finding other ways to cope with a world that is difficult for her to navigate. She is every bit as valuable, her feelings every bit as important as yours and mine. She told me once that she knows she has, “Something called Down syndrome” and that, “It takes me longer to learn things” but what she doesn’t know is that people use her diagnosis as a way to disparage or insult other people. I hope she never learns that.

One of our social events at The Connection

One of our social events at The Connection

We’ve come a long way with the “N” word…we’re making headway on the negative use of “gay” and “fag” and “homo” … we still have a long way to go with all the other ethnic and racial slurs we hear every day. It’s easy to use a word in a negative way to cast aspersions on a group if we don’t know anyone who belongs to that group but when we put a face with that word, it becomes personal. Before I knew people with special needs, I didn’t think about what it meant to use the “R” word but now that I know so many, I see a face when I hear that word … a child, an adult, a teenager, a parent, a brother, a sister…the faces of the people who would be hurt by the use of the word. Which makes my thoughtless use of the “R” word even worse.

I pledge not to use that word again…please join me in this pledge!

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta

Saban and Swinney Share A Secret For Their Success

Monday night, I will be glued to the television to watch Alabama and Clemson duke it out for the NCAA National Championship. I will be pulling for Alabama…I went to school there and will be on the edge of my seat to see if the Tide can clench an unprecedented 16th National Championship. I’m nervous about our chances for victory because Clemson is a formidable opponent. I’ve heard lots of people say, “No way an ACC team beats an SEC team in the title game,” but I know that Clemson is the finest team we’ve faced this year. And not because of anything they do on the practice field or in the locker room…not because they have some secret training tool or better athletes than we do. Actually, Clemson and Bama share the same secret to success and it has nothing to do with football and everything to do with what Dabo Swinney and Nick Saban encourage their players to do off the field.

Saban

University of Alabama Coach Nick Saban

Every major NCAA football program shares the same practices. All of them recruit the best athletes they can find, all of them scout their opponents and hire top coaches and trainers who specialize in preparing elite athletes for competition. All of them have thousands of boosters who donate millions of dollars to their programs. All of them have elaborate stadiums, time-honored game day traditions and legions of devoted fans. All of them give the young men they coach every conceivable opportunity to develop their raw talents. All of them work to mold the student athletes they coach into men, into leaders both on and off the field. There’s not much difference between any of the Division I schools and how they approach the development of their football teams. So how did Dabo Swinney and Nick Saban end up on top?

Clemson Tigers Coach Dabo Swinney

Clemson Tigers Coach Dabo Swinney

Clearly, both teams have enormous talent. They both have experienced coaches leading them. They both have motivated athletes and both teams will show up Monday night ready to compete, fully prepared for a game that is the culmination of all of their pre-season goals and dreams. But it takes something extra to end up playing for the Championship; a certain amount of luck plus that indefinable element that turns a group of young boys into a united team. Swinney and Saban have ended up on top because of all these things but they both have an added element to their football programs. Both of these coaches are affiliated with programs for people with special needs and both coaches involve their players in that affiliation.

Right now, you’re probably thinking I’ve lost my mind. What in the world could spending time with a person with Down syndrome have to do with becoming a contender for the football National Championship? How could someone with cerebral palsy have any affect on the outcome of a high-stakes athletic competition? What does a Division I athlete have in common with a person with autism? I think it’s their involvement with people who are routinely marginalized that has given Saban, Swinney and their players the edge.

Alabama’s legendary coach, Gene Stallings, once said this to me (I’m paraphrasing): I’ve spent my life around the most elite athletes in the world. I’ve watched professional football players achieve physical feats that I never imagined. But the most impressive physical, athletic achievement I’ve ever witnessed was when my son, Johnny, who had Down syndrome, took his first steps at the age of four. Those first steps represented years of practice, struggle and determination.

Saban has been involved with The Rise School at the University of Alabama since he arrived in Tuscaloosa. His personal foundation donates thousands of dollars each year to The Rise School, a national model for early intervention and inclusion. His athletes routinely volunteer at the center, always showing up for their shift in a coat and tie. The Rise School’s founder, Dr. Martha Cook, told me once that there’s nothing that moves her heart more than seeing a 300-pound linebacker sitting on the floor playing with a three-year-old child with cerebral palsy. She told me that Saban’s requirement that his players spend time with her students is evidence that he is “producing not just athletes, but men.”

Swinney has been involved with Clemson’s groundbreaking Clemson Life Program since he began his tenure and his personal foundation, like Saban’s, donates thousands to the program. Clemson Life is a full-on residential college program for students with special needs and has received national attention for the unique nature of its elements. Swinney invites Clemson Life students to closed practices, picks them up in the team’s bus and even lets them touch the fabled rock at Clemson’s stadium, a privilege only given to Clemson’s football teams. In this moving video, its evident to me that Sweeney has instilled respect for everyone, regardless of their abilities, in his athletes.

Clemson Life student at football practice

Clemson Life student at football practice

So what is it about football teams spending time with people who have special needs that gives them the edge over other teams? It’s my contention that the Tigers and the Tide view their accomplishments and abilities through a different filter because they regularly spend time with folks who share none of their physical ability but have the heart it takes to be a winner. How can you take for granted your superior physical ability when you spend an hour with a child in a wheelchair? How can you allow yourself to squander even one minute of your practice time when you have hands-on experience with people who will struggle their entire lives to tie their own shoes or to acquire the skills they need to live independently?

When both teams take the field Monday night, they will be equipped with everything they need to win…the finest preparation, a carefully thought out game plan and their own athletic prowess. They will also be equipped with a level of compassion and humanity that you can only experience when you spend time with people who have special needs. Those football players have been influenced, their hearts have been moved and their appreciation for their own skill has been humbled by seeing people overcome the odds every day…just to say their own name…or complete an academic assignment…or navigate a world that is designed in ways that prohibit their full involvement. I believe the players for Clemson and Alabama will bring to the field an inspiration and motivation to win that isn’t based on self-serving goals but instead is based on a true appreciation for the worth of every person’s abilities.

I could be wrong. Maybe Clemson and Alabama have ended up on top because they worked harder than every other NCAA team or because luck played out for them. But I don’t think I’m wrong. I think these two teams ended up on top because their coaches have instilled in them a perspective for winning that comes not from competing with the most exceptional athletes in college football but from interacting with people who have overcome obstacles and challenges those young athletes will never have to face.

And to me, that makes Saban and Swinney the best coaches in college football. And in my book, both teams deserve the National Title for this reason alone.

But I will, of course, be yelling Roll Tide all night!

Writing Stories With Billy Bob Thornton

Billy Bob Thornton has written a lot of things – Oscar-winning screenplays, best-selling books, chart-topping songs. He sometimes writes on his own, sometimes with collaborators. Back in April, he wrote a story with a new group of co-authoros…14 teens and young adults with special needs who are in my weekly creative writing class.

Billy and the Creative Writing Class celebrating their amazing story

Billy and the Creative Writing Class celebrating their amazing story

During our class time, it was clear that Billy was enjoying himself.

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As the story took shape, it was obvious that he was impressed.

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At the end of the class, it was apparent that he was moved and inspired.

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Turns out, he was even more impressed and moved that I thought he was because one of the first things he did when he got back in the music studio was to write and record a song based on his experiences with our students.

How cool is that?

The title of the song is “They Don’t See What We See” and it will have its debut on Monday, August 17, 2015 at 7:00 p.m. when The Boxmasters return to Huntsville to perform this song – just for us. The song will be released on a future Boxmasters album.

Not only has Billy chosen Merrimack Hall for the premiere of this new song, he is refusing any fees for his performance, making the event a huge fund raising opportunity for our non-profit organization. I hope you will join us for what is sure to be an amazing concert! Tickets are available at www.merrimackhall.com.

Want to read the story our students and Billy wrote together? I thought so!

Billy gave the class the following story-starter:

Annabelle and Scotty are twins who want to open their own school, one where students are allowed to study any subject they want. But…they have to figure out how to raise the money to start this school.

Our students took that ball and ran, collaborating with Billy to create this amazing story (note – if you see a word misspelled or a sentence structure that is out of order, that’s how the story was dictated or specified by our students; also note that some of our students took offense to Billy’s proclamation that he was a fan of the Arkansas Razorbacks, which is reflected in their story):

Scotty, Annabelle and The Freedom School

Written by: Billy Bob Thornton, Chelsie Atchley, Zoe Thompson, Anna Ryane Roth, Tristan Cranford, Kate Burnette, Dana Anderson, Cami Hladky, Laura Beth Matus, Maria Rivette, Katie Slaton, Eleanor Saft, Carolyn Snoddy, Jeffrey Anderson, Connor Furber

Scotty and Annabelle are 13-year-old twins who live in North Calorina. They have lived all over the world – from Germany to Italy to New York and even moved to Alabama once.

Scotty and Annabelle had an idea for a new type of school, one that would allow each student to study only the subjects that they were interested in learning about. They named this new school The Freedom School.

Scotty and Annabelle had wonderful ideas for the subjects that would be taught at The Freedom School. Algebra, theatre, dance, visual art, horseback riding, movie studio and broadway cast, history, choir, theatre, English and biology were just some of the subjects they wanted The Freedom School to offer. But by allowing each student to choose their own subject to study, the twins knew there would be many exciting subjects they hadn’t even thought about…like concept car design.

There was just one problem with their idea for The Freedom School…they had no money to pay it. They estimated that the school would cost $5 million. Where could a couple of 13-year-olds from North Calorina come up with that kind of money? They needed a fund raising campaign.

When they told their friends about their concept for The Freedom School, everyone’s reaction was, “I love that school!” All of their friends agreed to help them raise money by being on a committee.

Then, the twins asked their parents for help. They asked their dad if he would help them get a loan from the bank. Their father said, “Sure, I will,” and signed all the papers. But the bank wouldn’t give them the total $5 million, so they set out to raise the rest.

Someone they know who works at Disneyworld told them they could design and build a new ride for the theme park and they could keep all the money people paid to go on the mine-train ride they devised. They took a plane to Orlando, rode a bus from the airport to the hotel, another bus from the hotel to the theme park and then stood in long lines to see the existing attractions. They worked on their design but got distracted and spent $60.88 to take a side trip to Mexico.

When they returned from Mexico, Scotty said, “Back to business, Annabelle. We’ve got money to raise!”

First, they had a lemonade stand where small lemonades were $.25, larges were $1.00 and the lemonade special was pink lemonade with a slice of lemon to make it extra sour. They served cookies with the lemonade – chocolate chip, sugar, any type of cookie you can think of – and made $600.

Their friend, Tristan, offered to make a film called “Tristan’s Adventures, Starring the Cartoon All-Stars.” All the money made from this film would go towards the school. The movie was based on a dream Tristan had about travelling from Alaska to Canada, ending in Northern California, where fairies, pixies and goblins were featured.

Scotty and Annabelle got local TV stations to invite them on the air to tell the community about The Freedom School and donations started coming in from everyone.

Then they had a bake sale, which all of their friends helped them put together. They didn’t make much money on the bake sale and, feeling discouraged, Annabelle said, “We can’t do this. By ourselves, we can do nothing!”

Their friends said, “That’s not right, Annabelle! You have us to help you. Together, we can do it!”

Their friends organized a charity baseball game, which included T-ball for the younger kids. Every time someone made it to first base, a $2,000 donation was made. Annabelle said, “Who in the world will donate that much money every time someone gets to first base?” Her friend Chelsea said confidently, “Don’t worry…somebody will!”

Atlanta Braves player Freedy Freeman came to the charity game to help out because he’s a really nice guy. Someone suggested they could invite some of the Arkansas Razorbacks players to help too, but Scotty and Annabelle didn’t think much of the Razorbacks.

Katie told the twins, “Actually, I’ve been thinking of how I could help you raise money. I’ve decided to use $99,000 of my money to hire Billy Bob Thornton to direct my movie, “Katie’s Big Break.”

The twins thought this was a great idea. When Katie called Billy to offer him the job, he said, “I will donate all the money you pay me to The Freedom School!” The twins were so happy!

Connor told the twins that he had the coolest, greatest idea. Connor was willing to build a new concept car – a Super Car – for their school to sell. The car – called the Nissan GTR 2.0 – was faster than a Lamborghini and had a V12 Engine. The Nissan GTR 2.0 was worth $150,000 and Connor donated the money to the school.

Finally, Annabelle and Scotty met their goal so they threw a party to celebrate. They sent text messages to all of their friends inviting them to the party. Lemonade and cookies, served to the guests on trays carried by waiters, were the refreshments. At the party, everyone did the Hokey Pokey dance, which it was decided would be a subject taught at The Freedom School. The Freedom School opened and kids from all over North Calorina enrolled. Everyone was welcome at The Freedom School…as long as they weren’t a Razorback!

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On Taking A Girl With Down Syndrome To The Prom

Every spring, I see posts and articles like this one, about a handsome quarterback who invites a girl with special needs to be his date to the prom. Messages threads on multiple postings of this story, and others like it, always share a common theme:

“This boy restores my faith in humanity.”
“A true hero. His parents must be so proud.”
“His parents raised him right.”
“What a kind and wonderful thing this boy did to give her a night she will never forget.”

Yes, it is wonderful to see “typical” kids including kids with special needs in activities and it’s true that this boy…and the hundreds like him who ask someone with special needs to proms and homecomings…is clearly a kind and compassionate friend. This particular story isn’t just about the boy asking the girl on a date to a big event; it involves a friendship they have shared since fourth grade and the promise he made to her when they were ten-years-old that they would go to the prom together. So he gets multiple brownie points for being a man of his word. But I personally don’t think he’s a hero or that he extended an extraordinary act of kindness to a girl.

I think he’s a guy who wanted to ask a girl he likes and values to go to the prom with him. Period.

Why do we think he has done something heroic and selfless by asking his friend to share this right-of-passage, milestone moment with him? Why wouldn’t he want to ask someone who has been his friend for seven years to attend the big event? Maybe he asked her simply because he thought she would be the most fun date he could possibly have.

This boy might have been concerned that asking a “typical” girl to the prom – maybe the Homecoming Queen or a cheerleader – could mean that he’d spend the evening waiting on her to emerge from the bathroom, where she would spend most of the party gossiping with her friends. Or he might have worried that other potential dates would go to the dance, get totally wasted and puke all over his car and her expensive dress, which happens with alarming regularity at the high school parties in my community. Maybe he didn’t want to share his prom with a girl who would look at the other kids with judgement or critique the others girls’ dresses or hairdos. Why is it hard to believe that he chose to ask her – and she chose to say yes – because they like each other?

What if he asked her because he knew that she was the girl would treat the evening with the respect it deserves? What if he knew that she was the girl who would cherish the evening, say “yes” every time he asked her to dance and savor everything about being there with him? What if he knew that she was the girl who would make him feel like a prince if he treated her like a princess for one special evening?

To believe the notion that kids who are friends with kids who have special needs are somehow more noble or heroic than other teens is to think that there’s something wrong with being friends with kids who are “different.” He took her to the prom because he felt sorry for her or he took her because he wanted to make himself look good to others or he took her to the prom because no one else would.

Excuse me, but look at her…she’s gorgeous! Why can’t we imagine that he took her to the prom because he thinks she cute? And dare I say it…why is is hard to imagine that a typical teen might have a romantic interest in a teen with special needs? I loved the episode of Glee that featured Becky, the cheerleader with Down syndrome, and her typical boyfriend because when some of Becky’s friends questioned his motives for wanting to date her, he indignantly told them that (paraphrase) he liked her, plain and simple.

down syndrome prom date

What I see in these pictures is a beautiful young woman and a handsome young man who are about to have a great night. They look happy to be together and maybe a little anxious to dispense with the photo shoot and get on with the party. They look like they are proud to be chosen by each other for this special event.

When we make his choice to take her to the prom evidence of his extraordinary heroism, we diminish her. And we diminish all girls every time we tell them, in subtle and overt ways, that they are not complete unless they have a boyfriend, or unless their boyfriend gives them a corsage more elaborate than the other girls, or unless they get the most elaborate “promposal” of the year.

Hey, I’ve got a great idea! Let’s all agree to stop diminishing all girls – special needs or not…in any way…starting right now…Got it? Thanks!

So, he’s not a hero. But he is a handsome young fella who asked a beautiful gal to the prom. They are young people who have sustained a meaningful relationship since elementary school and who, I imagine, will continue to sustain their relationship for many years to come. And I bet that at their prom, they created memories they will both treasure for the rest of their lives.

And on a personal note, these two get my vote for the most adorable prom couple of the year!

Anna and Nathan, Prom 2015

Anna and Nathan, Prom 2015

 

Segregation Is Still Alive And Well in Huntsville, Alabama

On Sunday, March 8, 2015, at 2:00, Merrimack Hall will host Birmingham-based attorney Deborah Mattison in a free workshop to discuss special education law. Ms. Mattison is our state’s leading expert on IDEA, the federal legislation that protects the rights of children with special needs to an education. Ms. Mattison has successfully represented thousands of families in Alabama in their fight to obtain the education their children are entitled to receive. If you have a family member with special needs – school aged or not and regardless of what school district you live in – I urge you to attend this workshop. If you are an attorney, school administrator, teacher, aide or other service provider, I urge you to attend as well. It is my hope that this workshop will lead us into a grassroots movement to reform special education in our community.

The school system in my hometown has been under a desegregation order since 1963. The original order, issued by the Department of Justice, was intended to provide “fairness to black students.” Fifty-two years later, a Consent Order has been negotiated and was released to the public on January 26, 2015. I can’t begin to imagine how many lawyers, how much money and how many bureaucrats have wasted who knows how much time on this situation but worse than that, I can’t stand to think of how many African-American children have paid a price for our community’s inability to do the right thing.

The Consent Order calls for the redrawing of zone lines, the closing of several schools and the opening of new ones…all good things for our system as a whole. But who will bear the brunt of these changes? Students with special needs will. Our school system is finally taking steps to insure equitable treatment to racial minorities but how is it okay to take those steps to the detriment of another minority? If it’s not okay to discriminate against one group, how can it be okay to discriminate against another? And why don’t I hear a public outcry about this?

I am in no way suggesting that the struggles of one minority group are more or less important than those of another. But when we examine Civil Rights, I believe we should look further than race, ethnicity, sexual preference or gender.

Didn’t the Civil Rights Movement teach us that discrimination against other people for any reason is unacceptable? If someone is in the minority, does it really matter which minority box they check? Discrimination is wrong…period.

I was a child in Alabama during the height of the Civil Rights Movement. I grew up in a world that tolerated discrimination and injustice. I don’t want to live in a world like that again, nor do I want my grandchildren to live in a world where it’s okay to treat anyone unfairly. Thanks in large part to generational turnover – the bigots are finally dying off – Alabama is doing better, although we still have a long way to go.

I’m encouraged by the younger generation. Even here in Alabama, they are more open and accepting of those with differing views, lifestyles and life experiences than my generation ever imagined. But while we have to continue to advocate for equality across racial and gender lines, while we have to continue to teach tolerance for those with different religious views or different life experiences than us, we MUST make sure that the Civil Rights of ALL minority groups are protected.

So I’ve been pondering these things…segregation, inclusion, discrimination, diversity and all of those other politically correct buzz words we hear all the time. We go to “Diversity Training Workshops,” we are told that diversity in the workplace is important to business success, people pay lip service to the idea that we should celebrate diversity but it seems to me that most of the time, people are talking about diversity based on gender or race alone. I decided to see what google has to say about what diversity actually means. I found dozens of definitions, most of them variations on the following:

Diversity is ethnic, gender, racial, sexual preference and socioeconomic variety in a situation, institution, or group; the coexistence of different ethnic, gender, racial, sexual preference and socioeconomic groups within one social unit.

Isn’t there a group of people left out of this definition? Shouldn’t diversity include the coexistence – and equal treatment – of people with differing ability levels? A few of the definitions I found mentioned people with physical disabilities but not one said anything about people with intellectual disabilities. I wonder why and I wonder who it is that decides which categories of people are included in diverse groups.

According to the 2010 US Census report, 19% of our population has a disability. According to the “Quick Facts” page of the same Census report, 13% of our population is African-American. Both are in the minority but people with disabilities represent a larger percentage. It’s not okay to discriminate on people based on race so why is it still okay to discriminate against people with disabilities – in our schools, in the workplace and in our communities?

Many students with special needs in my community are forced to use a separate entrance when they enter and exit their school each day. Anytime we make rules that segregate one group from everyone else, that’s discrimination, isn’t it?

Many children with special needs in my community are bused from one end of town to another so they can be warehoused and isolated together, away from the “typical” students, in classrooms with inadequate resources and overburdened teachers. To me, this is veering dangerously close to what we did to African-American children in 1963. 

Many children with special needs in my community are forced to rotate schools every two years. Parents are told this is because children with special needs require special bathroom facilities or need access to changing tables. But I suspect the reason for this is to control test scores, rotating students who will presumably score lower on standardized tests than their classmates to mitigate the potential for earning a “failing school” status.

Many children with special needs in my community are forced to charge schools year after year, with no warning and with no recourse…even though many of them are less able to tolerate change…so why is no one demanding that the same 50-years’ worth of resources be spent on insuring the equal treatment of children with special needs? They are every bit as vulnerable and every bit as valuable as any child in any minority group.

And why in the hell does it have to take 50 years to find a way to treat every child – regardless of skin color or ability – with the dignity and respect they deserve?

Maybe you’re not as outraged as I am because you don’t know anyone with special needs. Maybe you don’t have a dog in this fight and don’t know why you should care that people with physical and intellectual disabilities are being mistreated. Maybe you think your “normal” family isn’t impacted by this diversity oversight.

Here’s why you should care: for every $1.00 we spend on interventions and therapies for children with special needs, we save the taxpayer $7.00 over the course of that child’s life (source); and with the autism rates currently at 1 in 63, you could very well have a child or grandchild with special needs in your family one day.

But I hope you will care because EVERYONE has value. I hope you will care because real diversity means that everyone is included. Your family may be average and your family members may be “normal” but I hope you will care because we are all more alike than we are different. I hope you will care because we should hold ourselves accountable for how we treat those who are least able to advocate for themselves.

Someday, your brand of “normal” could be in the minority. Maybe it’s only when we find ourselves outside the accepted norms that we can understand that there’s no such thing as “normal.” Normal…is a dryer setting.

So what do we do? March on Washington, sign petitions, sue our school board and write to lawmakers…sure, all of those things should happen. In the meantime, maybe we could do one simple thing…reach out our hand to someone who is different from us. That could be the beginning of real diversity.

Eight Ways People With Special Needs Are Better Than Me

As I prepared to post this, I thought about the “Joy in the Journey” that I’ve experienced because of my friends with special needs. If you love, “Welcome to Holland,” please watch our dance interpretation of Emily Perl Kingsley’s powerful words:

 

To My Friends With Special Needs:

I usually write about you but I decided it was time that I write to you instead. I want all 503 of you, whether you’re three or sixty-five, whether I’ve known you for a few months or for years, to know that I see the differences in us.

I see how we conduct ourselves and I find your way to be far superior to mine. I want you to know that I’m trying to be a better person by following your example. I’m making progress, little by little…day by day. When you’re as old – and as flawed – as I am, it takes a minute.

Here are just eight of the things that make you a better person than me and that I am trying to change:

1. The way you treat me is how I should treat other people. You accept me exactly as I am. You never judge me and when I let you down, you forgive me completely.  When I do something right, you celebrate and when I’m wrong, you tell me so…and then you always give me a second chance or a third chance or as many chances as I need.

The way I treat other people? Let’s just say I’ve got some work to do.

The Connection in Concert

The Connection in Concert

2. You don’t let negative emotions define your life. People who don’t know you the way I do may think that you are always happy or that you don’t experience the whole range of human emotions in the same way “normal” people do. But I know that you hurt, just like me. I know you feel frustration and disappointment, fear and anger, shame and guilt, heartbreak and bitterness. The difference between us is that you don’t let these negatives emotions dominate you.

I’m bogged down by years of emotional baggage. I avoid trying new things because I’m afraid to fail. I throw myself pity parties on a regular basis. I worry what others think of me. I sometimes do things just because my ego needs to be bolstered or because I want to win someone’s approval.

By contrast, you may be afraid to fail but you try anyway. You don’t let the opinions of others stop you from doing something you want to do. You are constantly underestimated by others, marginalized by our society and left out of things the rest of us take for granted. You don’t allow these injustices to get you down…you soldier on, usually with a smile on your face.

Now, I don’t mean to infantilize you or make light of what I know is your desire to be accepted. You feel every slight, you are aware of every stare and insult, and sometimes, it must be more than you can stand. But you choose to accept the challenges life has sent with grace and dignity. You could make the choice I make and allow negatives to inhibit you but thankfully, you don’t.

And you do not know how to feel sorry for yourself…that’s just not your style.

Project UP rehearsal

Project UP rehearsal

3. You willingly display your vulnerability. Some of you are plagued by doubts and worries or live with intense anxiety. You may not like to be touched or you may not be able to tolerate changes in your routine.

When I’m anxious or worried or overwhelmed, I retreat and wall myself off. I put up my defenses and resist anyone who tries to encourage me. “I’m fine,” I say to people who ask what’s wrong, or “Nothing,” I say to loved ones who wonder what’s bothering me.

Unlike me, you’re not ashamed to ask for help. You are willing to admit your insecurities. I spend my time trying to hide mine.

4. You understand that words are often the very thing that prevents us from really communicating with each other.

Some of you are not able to speak but you communicate much better than I do.

I talk all the time (mostly about myself in one form or another) and yet, my communication with people is often guarded and cynical. I am frequently mistrustful of the intentions of others.

For you, the absence of words means that you communicate with your eyes, your hands, your movements, your heart. You know that words are not a requisite for connecting with others.

5. You say what you mean and you mean what you say. When I first got to know you, I found it disarming that you are so utterly honest and so totally literal and transparent. You have no concept of insincerity or sarcasm or anything other than complete authenticity. You do not have the capacity to be disingenuous.

I am manipulative. I’m not afraid to throw my weight around or to use intimidation if I think its necessary. My own self-interest is of paramount importance to me. You don’t realize this about me – my duplicity and selfishness – and I hope you never do because I couldn’t stand for you to be disappointed in me.

6. You don’t understand recriminations or blame or fault-finding. You understand forgiveness.You often get angry, at yourself or at others or at the unfairness of life in general, but you express your anger and then…you’re over it.

I can get mad quicker and stay mad longer than anyone I know. I’m still holding onto grudges against people for perceived slights from decades ago.

You get your anger out and then you move on…quickly and without any fuss.

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta

7. You do not define yourself by your success…or by your failures. When I accomplish something, I boast. Maybe not out loud, but I post on social media or I let that inner voice in my head tell me that I’m a big deal.  I’m too eager to tout my credentials, show off my resume, display my awards.

Nothing I accomplish comes close to the things I’ve seen you achieve – first steps when when doctors said you would never walk, words that therapists said you’d never speak, challenging dance combinations and songs that you master.

You are competitive and enjoy a good standing ovation or pat on the back. When you accomplish something, you celebrate…with gusto. But after the celebration is over, you just move on to the next challenge.

8. You understand that it’s better to happy than it is to be right. I hate to be wrong and I am reluctant to admit I don’t have all the answers. I want to have the last word.

You are perfectly comfortable saying, “I don’t know.” There are only three phrases you use as the “last word” and they are “I’m sorry” or “I forgive you” or “We disagree but I love you anyway.”

Samuel in "Christmas in the City"

Samuel in “Christmas in the City”

Thank you for teaching me these lessons. And for giving me as many chances as I need to get it right. Be patient with me…this is gonna take a while!

With all my love,

Debra

 

What Happened When A Radio Talk Show Host Used The “R” Word On Air

This post contains graphically offensive racial and ethnic slurs that are not a part of my vocabulary…I am using them to illustrate a point. I am deeply offended by the use of words that disparage or diminish any group of people.

Words…what power they have.

The words we choose to use can open a dialogue or shut one down; they can make a friend or an enemy; they can forge a bond or create a divide.

This morning, local radio station owner Michael St. John was hosting his daily morning talk show when he unintentionally ignited a firestorm by his repeated use of the “R” word. I didn’t hear it myself but one of the parents in my program did, and she called me. She was hurt and outraged. She said, “You are our voice…please speak for us” so I called the station to see if Mr. St. John would speak with me. We talked for nearly an hour and I think both of us came away feeling positive.

On-air, Michael relayed the story of two separate events that happened to him yesterday that involved two people with special needs, one who worked in a grocery store and the other at a fast food restaurant. In both instances, the person with special needs was unable to perform the job duties they had been assigned. In both instances, everyone involved had become frustrated – the people with special needs and the customers they were tasked with serving. Michael explained to me that he was trying to ask a general question…is there some sort of governmental mandate that is requiring businesses to hire people with special needs even if they aren’t qualified for the jobs?

I should mention here that Michael’s radio station is a conservative talk station, which helped me make sense of his “big government interference” theory. I should also mention that there is no governmental mandate to hire people with special needs and that I strongly encourage businesses to give jobs to people with special needs when they can. We have two employees with special needs who make valuable contributions to our organization each day.

In both of these instances, the person with special needs had difficulty making appropriate change for a purchase. Michael wondered why they were put in the position of operating the cash register if they weren’t skilled enough to do so, which is a valid question. Personally, I think the inability of some fast food workers to make change has more to do with our failing school system and our minimum wage than it does with having special needs but that’s a political ball of worms that I don’t care to open in my blog.

People didn’t hear Michael’s question or understand his point because all they heard was his choice of words…retardedretardretarded afflictions…and his repeated use of “them” and “those people.”

When I asked him about his use of these words, he was adamant in his intention that he used these words to describe the diagnosis of the person and did not mean to cast aspersions on them. And I was stunned to hear that Michael actually has a step-daughter with an intellectual disability. Turns out, Michael is not offended by the “R” word as a parent and did not seem to be aware that its use is no longer deemed appropriate.

I wondered how a person – especially one who has a family member with a disability – could be so oblivious to the fact that the “R” word is no longer acceptable but I reminded myself that he lives in a small community in North Alabama, which could explain a lot. Rednecks can be slow to catch onto trends.

Ouch…that stings because I, too am a redneck from North Alabama.

When I tried to explain to him that the “R” word is inflammatory and negative, he was a bit defensive in his stance that you can’t eliminate a word from the dictionary just because some people find it offensive.

Here is one thing Michael said to me (paraphrased):

People with retarded afflictions shouldn’t be put in jobs that don’t match their skill set.

So I asked him to substitute other offensive words in this sentence and see if he thought it would be acceptable to say them live on the radio, like this:

Faggots/niggers/chinks/kikes/dagos/wet backs/rag heads/crackers shouldn’t be put in jobs that don’t match their skill set.

I think a “lightbulb” went off for Michael.

The surprising thing was that the longer we talked, the more I liked Michael, even though I was primed to take his head off. He truly didn’t intend to offend people with special needs or their families. He truly intended to simply ask what he thinks is a valid question. He is truly grateful for the job his step-daughter has and knows that she takes pride in having a job she can do independently and well. He truly wants other people with special needs to have that same employment experience- he doesn’t want them to be placed in jobs that are inappropriate for them because he truly hated to see two people with special needs becoming frustrated when they were unable to be successful in their assigned tasks.

Michael said to me, “When a door slams in your face, a window will open and I think this happened today so that you and I would have this conversation.” He’s promised to issue an apology/clarification on air tomorrow and has invited me to be his guest on his show in September, an invitation I’m happy to accept.

I may not agree with his politics or enjoy conservative talk radio but he’s not a bad guy…he just made very poor word choices. I do the same thing every day when I drop “F” bombs around. There are certainly people who tune me out or become outraged with me because I say “fuck,” even if they agree with my message. So a lightbulb went off for me, too.

Although I’m sure I will continue to drop “F” bombs when I believe they are appropriate and while “fuck” may be offensive to some people, it is an adjective or a verb, not a noun used to disparage someone.

Which brings me back around to words and their power. We have advocacy groups telling us every day that certain words aren’t acceptable, from the NAACP to the LGBTQ. So I am adding my voice to the chorus of voices that are trying to tell our society that we are all more alike than we are different…and not just in matters of race, ethnicity or sexual preference.

It’s not okay to call anyone names, people.

People with special needs are people…they are not just a diagnosis or a stereotype. They are people with feelings and they deserve to be respected, by us and by our words.