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.

What I Learned About Myself From A “Hater”

I learned four things about myself this past week. I’m 54 and thought I knew myself pretty well but self-awareness is a lifelong journey, I guess. I learned these things because I received an email from a “hater” who was angry with me. When I was still agonizing over the hater’s words three days later, I decided there must be a lesson in there somewhere, one that I was obviously not getting.

Abbey was our MC at Disney World

Abbey was our MC at Disney World

The first time I read the email, I was slightly amused. It was difficult to read because it was poorly written, full of grammatical mistakes and malapropisms. It was hard to take the words seriously because they didn’t make much sense. But the second time through, I zeroed in on the names I was being called…petty, manipulative, toxic. Ouch.

My first instinct was to feel embarrassed and angry…no one likes to be called names. I knew that these words were coming from someone who was disgruntled with me. I said to myself, “You can’t win them all” and “Everyone isn’t going to like you.” But even though people say nice things to me all the time, those insults kept resonating in my brain. I wondered why it mattered so much to me that one person said unflattering things about me.

I fretted and worried over those words. Am I petty, manipulative and toxic? Clearly, the hater thinks I am but do other people think of me that way? If I know for a fact that there are ten people who like and respect me, why do I care that there’s one who doesn’t? Why is it so easy to believe the haters and so hard to believe those who praise us? Am I the only person who gives too much credence to the words of haters and not enough credence to the words of supporters?

On their way to the stage!

On their way to the stage!

Whenever I receive negative feedback, I try to objectively decide if it has validity. If I decide the negatives are valid, then I decide whether they are something I can, or am willing, to change. And then I try to make appropriate changes to address them. Since I didn’t believe these insults are valid, I thought there was nothing I needed to change or correct. And yet, I couldn’t shake off those words. Then I had a “lightbulb” moment.

I realized that my reaction to the hater’s words prove that I’m not petty, toxic and manipulative (if I was any of those three things, I wouldn’t care what anyone said about me). But my reaction did highlight four other unflattering things: I always want to be right; I always want to have the last word; I am way too good at striking back with a vengeance when someone makes me mad or hurts me; and I can’t tolerate being rejected.

Project UP at the Downtown Disney Ampitheatre

Project UP at the Downtown Disney Ampitheatre

For three days, I had my finger poised over the “reply” button. I’m proud to say that I didn’t ever push it but boy, did I want to! I wanted to refute every single accusation and set the record straight so I could prove that I was right. I wanted to hit back, way below the belt. I played out imaginary conversations in my head, thinking of all the ways I could use my exceptional verbal skills to emotionally slash the hater. I was itching to have the final say.

I was indignant at the rejection…how dare they think these unkind things about me? Don’t they know that our local newspaper says I’m one of the 10 Most Influential People in town? Don’t they know that I am supposed to be universally revered, just because I’m me? Don’t they remember all the nice things I did for them, all the times I overlooked their mistakes and helped them out of messes? How dare that hater…did they not read the rulebook that says “Everyone must like Debra, all the time, no matter what?”

I can’t believe I just admitted thinking all of that. It is pretty scary inside my head sometimes.

I was so caught up in imagining retaliation that I didn’t acknowledge the lovely thank you note I got from someone and I didn’t reply to the beautiful Facebook comments on the pictures of JSAP’s triumphant performance at Disney World. I can’t get those three days back, but I can go forward with the intention of never repeating these mistakes if I can help it.

Anna's face says it all!

Anna’s face says it all!

When I need inspiration, all I have to do is look around me at the example the 503 children and adults with special needs in JSAP show me every day. They don’t waste time plotting revenge. They don’t hit below the belt. When they are wrong, they admit it. When they are rejected – which happens to them every single day – they turn to their friends and family for reassurance of their value and let the haters roll off their backs.

So, the next time I encounter a hater, I am going to try to remember these things:

I am not entitled to have everyone like me.

I’d rather be content than be right.

It will not make me feel better to have the last word because getting in one more round of hurt only prolongs a dispute, it never resolves one.

It doesn’t matter how old I am or how well I think I know myself…I will always have lessons to learn. I’d love to be able to say, “I’ve got this…I’ve learned it all” someday but I’m a work in progress. And I’ve got life’s best teachers to help me!

P.S. I realize that writing this post could be construed as a great way to get in the last word. My intention is to share what I learned about myself after reflecting on my reaction.

P.P.S. I’m also not fishing for compliments but I’d to love hear about a time when you’ve been in a similar situation and what you learned from it.

Project UP and Goofy at their Master Class

Project UP and Goofy at their Master Class

 

 

Finding The Magic Point Where Differences Don’t Matter

I know an extremely talented writer, Rebecca Moore, who writes a blog that I love….”What would the Wertis say?”…you can read it here. Rebecca’s blog posts are sometimes hilarious, always thought provoking and are written with a command of words that only truly gifted writers possess. She writes about disability, world travel and living abroad, life in the south. She writes about being a woman, being a wife and mother, using her own beautiful photography and clever graphics to engage her readers. I love reading her posts.

With her permission, I have reprinted one of her posts below. In an email chain between us about this post, Rebecca said this about what she’s observed in our programs:

If you put kids of differing abilities together in certain settings there is this kind of magic point at which the disabilities or normalcy are sort of irrelevant.

Wow. To me, Rebecca’s words a testament to the importance of what we’ve created in The Johnny Stallings Arts Program. We have found that “magic point” by bringing people together to participate in the arts. If you visit one of our classes, you will see kids and adults with all sorts of diagnoses together with typically developing peers and ability levels make no difference. Everyone learns from everyone else. Everyone encourages everyone else. Everyone is included equally.

I know you will enjoy “Someday” and hope you will subscribe to Rebecca’s blog! You can read the post in its original format here.

Someday

I started this post in headphones one morning because the older daughter was having a bout of perseverative vocalization, and it gets into your head, all the phrases she has collected, the classmates’ Dr. Who voices from eight years ago, bird sounds, the sounds from wherever, it’s there like all of the conversations of Earth that travel through space.

Also, my desk is in the hall and her father’s baseball podcasts can be hard to tune out. I normally use headphones if I am doing work with sound files that would disturb others, but people are not creating noise to communicate with me right now, they are in their own worlds, and I am in mine.

The cat jumps into my lap, reeking of Justin Bieber perfume, a Christmas gift the year that the older daughter liked the pop star. She realized at some point that he would never come here, that their love was only her love, lopsided, unrequited and doomed, yet she has rediscovered the perfume and emerged from her room in clouds of it. It’s what girls like to do, she informs me. How has the cat come to smell so strongly of the cheap, feminine scent of Someday? Just hugs? Are you sure?

I have taken notes about my daughter for years, notes to record the milestones of infancy, notes for teachers and therapists, family journal, notes for the book about one mother’s fierce journey, but then she has never asked me to tell her story and also it’s her story. Which is a question for anyone who sets out to write about anyone, even their own experiences in the context of living in the world with people, in the house with people: where does their story end and yours begin?

When the internet was young and we were just venturing out into the world of our daughter’s diagnosis we would stumble upon what my husband termed “angry autism dad” websites. These were before blogs as we know them today. They were an html-y collection of posts with links to government reports about concerns over thimerasol or links to university studies that hinted at possible causes that might, someday, lead to possible cures. Sometimes they were personal and recounted the small slights and injustices one encountered slogging through days filled with perplexing behavior from our children or insensitivity from adults from whom one would have expected more compassion. Fix this now, they demanded. Or, fund this study, stop the conspiracy. We were hoovering up information then. These men were the heroes of our strange planet. Vitamins, weighted vest, hair test, casein intolerance, leaky gut, PECS, environmental hazards, legal rights, insurance will cover six sessions in the course of a lifetime disability, read this, try that, ask about, a wonderful woman. Hope, hope, hope. Trust, trust, trust. Fight, fight, fight.

Diagnosis is, at first sight, a lonely planet. Some people and experiences are shooting away from you at the speed of light, but as some people pass from your life, others step in. I joined a listserv with more voices, more stories, less anger than the lone dad furiously accumulating research. Time passed.

Fast forward to the here and now. Our nieces are visiting for the week. We have put together a week of Cousin Camp activities. Last night we attended a kids yoga class at the place where the older daughter takes dance. There are many things you don’t envision for yourself as a parent, being a dance mom was one of them. The other girls at yoga are all friends from dance. Together, we represent a range of abilities, talents, chromosome counts, social skills, challenges and flexibility. I am the only adult participant, but this is a place of acceptance and my neck has been really stiff.

After doing tree pose, the instructor calls us all over. Picture a forest, she says. The trees are different sizes. They don’t stand perfectly still, they sway, some trees lean against other trees. She has us stand in a circle, one leg bent against the straight leg, arms outstretched to touch the fingertips of the people next to us. Being connected, she explains, gives each of us the strength we need to balance. And it works. We hold the pose together, in a circle, which gets us off our individual mats and, thinking or not thinking about the symbolism, experiencing it anyway.

I didn’t ask the girls later what they made of this, if they even thought about it at all. Did they assume they were a source of strength to the others or did it surprise them that it was easier to balance in the group? An experience like that is a gift they will unwrap someday, in their own time. If I were to follow the conventions of the fierce mother narrative, I might end this post with a quote of universal wisdom from Le Petit Prince, or conjure up a vision of the older daughter standing tall in the forest of life, but I think it is enough to leave you in a yoga studio contemplating your own pose.