Caitlyn Jenner…Don’t Shoot The Messenger

In this blog, I advocate for people with special needs. My mantra has been, “We’re all more alike than we are different” and “Normal is a dryer setting.” I was starting to think that our culture might be turning a corner, that maybe we were reaching a tipping point where the differences between us mean less and the similarities mean more. And then along comes marriage equality and Caitlyn Jenner and some people’s reactions to them makes my hopefulness seems premature.

One of my precious friends

One of my precious friends

I watched Caitlyn Jenner’s speech online the day after the ESPY Awards and cried when she said, “We’re all different. That’s not a bad thing. That’s a good thing.”

When she spoke those words, I thought of all the people with special needs I know and love and hoped that those words of tolerance might be applied to them…hoped that the athletes and celebrities in the audience and the millions watching at home – might think of those words the next time they see a person with Down syndrome or autism or cerebral palsy or any other disability…thought that maybe some awareness might be raised.

To me, anytime anyone advocates for the acceptance of others who are different, it’s a win for everyone.

And yet, I look at my newsfeed and see that some of most vociferous objections to the LGBT movement and to marriage equality are coming from people who have family members with special needs. In message threads on the pages of people I know and on special needs blogs I follow, I see spiteful, hateful, intolerant comments. Most of them, of course, identify as conservatives or fundamental Christians. In numerous comments I read, people called Caitlyn Jenner an “abomination.”

It wasn’t too long ago that people with disabilities were called the same thing.

Alan and me with some of our favorite people

Alan and me with some of our favorite people

A few months ago, I had a meeting with a parent of a person with special needs. For nearly two hours, the parent told me they basically have a zero tolerance policy regarding discrimination against their family member. As the meeting ended, the parent made a disparaging remark about someone who is gay.

How screwed up is that? You don’t want anyone to discriminate against your family member who has a disability but you are okay with judging someone because they are gay? Someone please explain that one to me.

A gay teenager I know wore a pink tiara on his 17th birthday. A teenaged girl told him to take it off. He asked why and she told him that boys weren’t supposed to wear pink, nor should they wear tiaras. He told her that it was his birthday and he could wear a tiara if he wanted to. She told him he was weird. She told him that if he didn’t remove the tiara, she couldn’t be friends with him any longer. She said, “You are a freak.”

He told me later that he was shocked by her words…not because he hasn’t heard words like them before but because the girl has Down syndrome. “We’re both different from the norm,” he told me. “Shouldn’t we stick together?” I would certainly think so.

Two of my favorite guys!

Two of my favorite guys!

Caitlyn Jenner offered a powerful message in her speech – people who are different from what most people define as “normal” should matter…to everyone. No matter what your opinion of trans people may be, even if you think that she’s just a “rich man in a dress” as Conservative Christian blogger Matt Walsh says, Caitlyn used her celebrity to shine a powerful spotlight on a group who has been marginalized.

And anyone who is willing to start a national conversation about how we are all people, no matter how different we are from each other, is doing a great service for anyone who has ever been marginalized.

If everyone would focus on the message instead of the messenger, maybe we’d get somewhere. Instead of focusing on the “rich man in a dress,” shouldn’t we be focused on Caitlyn’s message that every life matters, even if it is drastically different from your own? Instead of focusing on your definition of marriage, wouldn’t it better to focus on the notion that no one’s love is more important than anyone else’s?

I have learned to appreciate the value of every life by spending so much time with people who are largely ignored and overlooked, treated differently because they have an extra chromosome or can’t walk or talk like I do. And when I hear someone – even a “rich man in a dress” – proclaim that it’s okay to be different, I want to believe that the message will resonate and spread acceptance and understanding over us all. But then I read comments and blogs, oozing with judgement and hypocrisy and it seems like those who most need to “get it” are totally missing the point.

Advocates and family members of people with special needs celebrate when “one of their own” receives some sort of national recognition. Like this man who owns his own restaurant or this young woman who is breaking into professional modeling. They celebrate because these success stories start conversations and help people who don’t know someone with special needs see them in a different light.

Whenever the nation’s attention is focused on the topic of diversity, in any form, it elevates the understanding of diversity for everyone.

Whether the conversation is about gay people or racial minorities or trans people or people with special needs…if we can open our hearts to one group who is different from us, it makes it easier to open our hearts to other groups who are different. I can’t understand people like Sarah Palin, who has a son with Down syndrome, when she defends that nut case Duck Dynasty guy who compares homosexuality to beastiality. She doesn’t want you to use the “R” word but it’s okay with her to use inflammatory and derogatory language about homosexuals. I just don’t get it.

Two amazing teens!

Two amazing teens!

I suppose there is one big difference between the treatment of people with special needs and people who are gay or trans. Basically, people with special needs are discounted, maybe pitied and a large portion of our society thinks they don’t have much to contribute whereas gay and trans people are despised by many, considered by some to be morally bankrupt and headed straight for hell. I don’t know what’s worse – to be hated or forgotten.

If you believe that same-sex marriage is wrong, then don’t marry someone of the same sex. If your God and your Bible tells you that homosexuality is a sin and if you believe that accepting the LGBT community means the end of civilization as we know it, then by all means, go to your church and pray for your salvation. But don’t tell me that the only differences that matter are the ones that pertain to you. Don’t tell me that your brand of different is more important than anyone else’s. Don’t tell me that people with special needs don’t deserve to be marginalized and then turn around and marginalize someone else because when you do that, your hypocrisy trumps your message.

Having fun with some of my friends

Having fun with some of my friends

Everyone is different. That’s what makes life so interesting and beautiful and precious. Surely, there will come a day when we will be a society that says, “I may not understand you but I respect and value your life experience” instead of one that says, “If you don’t agree with me, or look like me, or behave like me, or believe what I believe, then you’re wrong and you are my enemy.”

Maybe we’ll become a society where anyone who has ever been mistreated will stand up for anyone else who is mistreated.

It’s probably going to take a lot of messengers – including men who “wear dresses” and women who marry women – to get us there.

 

 

Marriage Equality…For Everyone?

Beth and Frank are deeply in love. They have been in a committed, exclusive relationship for nearly 20 years. They have a wide circle of friends and a wide variety of shared interests. They take pride in each other, encourage and support each other. Their extended families are connected. Their’s is a deep, complex, nuanced, long-term relationship that gives them both great satisfaction. Beth told me once that her greatest dream for her life is that someday, she and Frank can get married. But they can’t get married, nor can they live together outside of wedlock. Beth and Frank aren’t real but their story is true for dozens of couples I know. bill-and-shelley-wedding-photo When the Supreme Court made its historic ruling on same-sex marriage, I celebrated. But then I remembered all those couples I know who are still denied the opportunity to marry and decided the battle for marriage equality is not over yet. And it won’t be over until all the Beths and Franks that I know – and the millions of Americans like them – are afforded the same chance to marry that you and I are. The reason they can’t get married has nothing to do with love or religion or morality and everything to do with money.

Their relationships face the same derision and marginalization that same-sex unions have been subjected to for so long. Then, these relationships are further devalued and disrespected because should these couples decide to marry, they could be subjected to substantial financial penalties on the government benefits they receive – benefits they rely on to live as independently as possible.

As one woman said to me, “No one will let us get married because we’re special.” special-needs_539_332_c1 I’ve done some research to find out why the marriage penalty for people with disabilities even exists in the first place and, on paper, it makes sense: two married people who live together can save money on shared living expenses – rent, utilities, groceries; if those two people also happen to receive government benefits, then those benefits could be reduced because of the savings. In the case of people with intellectual or physical disabilities, each person could receive a 25% reduction in their benefits if they married. If they chose to live together outside of marriage, as soon as their living status was reported, their benefits would be cut.

We say that we want people with special needs to live as independently as possible, that we want to educate them in a “free and appropriate environment (FAPE)” and that we want them to live in the “least restrictive environment (LRE)” and yet we hamstring them at every turn. If they have jobs, they are restricted from earning more than a pittance or their benefits are jeopardized. If their families place money in their names to insure for their long-term care, their benefits can be reduced (unless the family has entrusted this task to a team of highly-skilled attorneys and accountants who set up a Special Needs Trust). If they live in a co-ed group home, they are forbidden from having relationships with the opposite sex out of fear that love might bloom, risking the benefits that pay for their housing.

Raising a child is an expensive proposition. Raising a child with special needs is exorbitantly expensive, even for families with deep pockets and the best insurance. Families rely on the assistance of a complex chain of entitlements and benefits that make it possible for their children to have the therapies, services and assistance they need to live full and rewarding lives. Explaining those benefits goes beyond the scope of this post – partly because I can’t begin to interpret them all and partly because they are so intertwined and include SSI, SSDI, Medicaid, Medicare, Welfare, Section 8, food stamps and others.

People with disabilities rely on some or all of these benefits but in order to retain them, we expect them to basically live in a state of poverty and restrict the amount of money they can earn, save or have in their name. This article from The Huffington Post includes resources and links, along with a simplified explanation of the benefits most at risk for the majority of people with disabilities, should they marry.

My purpose here is to raise awareness of the issue and to ask this question: Should people with special needs be allowed to marry, without any financial penalty?

Justice Kennedy, in writing the opinion for the majority, said of marriage that, “Its dynamic allows two people to find a life that could not be found alone, for a marriage becomes greater than just the two persons. Rising from the most basic human needs, marriage is essential to our most profound hopes and aspirations.” Justice Kennedy also wrote, “Marriage responds to the universal fear that a lonely person might call out only to find no one there. It offers the hope of companionship and understanding and assurance that while both still live there will be someone to care for the other.” couple-with-disability-wed-photo I believe that everyone who wants to be married should be afforded the right to fill that basic human need, to assuage the loneliness of living alone and to have the companionship of a partner, regardless of their IQ or physical limitations.

Granted, adults with special needs who want to get married may require additional support systems to insure their success. Most of the families that I know would be more than happy to provide those support systems to their loved ones…they just can’t afford to take the financial risk.

People may question how two people with special needs could actually live independently, in a state of marriage. A documentary, Monica and David, paints a lovely and realistic picture of marriage for two adults with Down syndrome. This touching film won numerous awards and I highly recommend it for anyone interested in the topic (it can be found here on Netflix).

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More information can be found on the Marriage Equality for People With Disabilities Facebook page. A petition is available on change.org to end the penalty that prevents people with disabilities from getting married. I signed it and I hope you will consider signing it too.

Society can debate about government subsidies and programs, healthcare expenses, the feasibility of people with special needs living independently and other details in abstract all day long. I can’t think of these things in the abstract because when I think of them, my mind immediately goes to all of the Beths and Franks that I know.

I think of adults who love each other and long to share their lives together in a legally recognized union.

I think of adults who deserve the dignity and respect that marriage would bring to their relationships.

I think of adults who deserve to have lives like the rest of us because the only difference between “them” and “us” is a few IQ points…or the way we move around…or the way we communicate.

They” are not people with disabilities…they are people, who experience the full range of human emotions that we all share.

Their” love is no less than our love.

And if #lovewins is true, then everyone’s love should win. 11722330_848694518546662_4909391832293084721_o

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.

We All Have Special Needs

I am at a convention called BlogHer. There are 4,000 bloggers here with me. I feel very small and I have so much to learn.

One of this morning’s speakers talked about how connecting with a community of bloggers and with her own readers helped her come to terms with her son’s autism diagnosis. Another keynote speaker, Jenny Lawson – The Bloggess and author of the book Let’s Pretend This Never Happened, spoke about the response she received when she shared with them that she has a mental health diagnosis. Her readers responded with thousands of comments that shared the refrain, “I thought I was alone.” She has emails from people who told her they were on the verge of suicide and read her blog post, and the comments left by the community of people who also have a mental health diagnosis, and decided not to end their lives.

This huge conference has attracted speakers, vendors, panelists and writers of every variety. The event organizers had their pick of keynote speakers, as this conference has brought together women from around the world who blog about an array of subjects.

I wondered, as I listened, if they intentionally chose women who have had experiences with “disability.”

Abbey & me at NRG Dance Project in Atlanta last year

Me & Abbey at NRG Dance Project in Atlanta last year

And then I remembered Abbey’s words to me and realized it wasn’t a coincidence that these two keynote speakers would reference issues that millions of people live with.

Abbey is 14 now but when she was 12, she said the most impactful thing that anyone has ever said to me in my life. Abbey has cerebral palsy and knew about my son, Austin’s, struggle with addiction.

Any time he was away at an alternative school or residential treatment program, she asked for updates on his progress. And so while he was in Atlanta, at what would turn out to be his final treatment program, as he is well into his second year of sobriety, Abbey asked me how he was doing.

I told her that he was doing great and that we thought he might finally be ready for real recovery.

She said:

“I’m so excited!!! I’ve been thinking about Austin a lot lately and thinking about him has made me realize something.”

I listened, and she continued:

“Miss Debra, we all have special needs … and we all have two special needs in common:
We all have the need to be loved, and we all have the need to be accepted.

And then she said, “Some people’s special needs are on the outside, like mine. And some people’s special needs are on the inside, like Austin’s.”

Ashley, Abbey & Austin in 2011

Ashley, Abbey & Austin in 2011

I took such comfort from these words, spoken to me by a 12-year-old girl who will never be able to tie her own shoes or walk without difficulty.

It was not a coincidence that two of this morning’s speakers have been affected by a diagnosis. Because Abbey was right – everyone has special needs of one sort or another. Some people’s are just easier to recognize than others.

I’m going to soak up everything I can from this conference … so I can be a better writer and a better advocate for the people with special needs that I know and love.

More importantly, I hope to learn how to use this blog platform as a springboard for spreading Abbey’s message of acceptance, of tolerance, of recognizing that we are all more alike than we are different.