How a 17-Minute Phone Call With Temple Grandin Changed Me

temple_grandinTemple Grandin will speak at the Von Braun Center Concert Hall on Tuesday, March 7, 2017, at 7:00 p.m. Tickets are $35.00 and can be purchased here. The evening will begin with a book signing at 5:30 – buy one of her books on site or bring your own copy. Her speech will begin at 7, followed by a Q&A with representatives from five organizations who are working to expand opportunities for people with autism spectrum disorders and other diagnoses into our workplaces and our community. If you haven’t seen it before, watch Temple’s Ted Talk here.

When my phone rang, I was unloading groceries from my car. I didn’t know the number and normally would have let the call go to voice mail until I could finish what I was doing. But for some reason, I shifted the groceries sacks and said, “Hello?”

I knew who it was after she uttered about four words.

Temple Grandin was on the other end of the phone line.

I panicked. I was scared, intimidated and slightly star-struck. I’ve been watching endless hours of Temple’s speeches, read her books on autism and am breathlessly awaiting her visit to Huntsville next week. And here she was, on the other end of the phone, asking me what Huntsville is like and what we hope to accomplish after her talk.

I was intimidated to talk with her, not because she has autism but because she is one of the most accomplished women in the world. Time Magazine listed her among the 100 Most Influential People of 2010 thanks to her achievements as a scientist and advocate for people on the autism spectrum. A biopic about her life, Temple Grandin, won multiple Emmy© Awards. She’s written dozens of books and is recognized the world over for her brilliant design innovations used extensively by cattlemen and ranchers around the globe. I’ve talked to a few celebrities in my work at Merrimack Hall but none have left me as tongue-tied and awe struck as Temple Grandin.

I’m one of those “social yackity-yacks” that she references in her speeches. I immediately began trying to moderate my speech…the tempo, the volume, the tone. I thought of all my friends with autism who have given me feedback, sometimes verbal and sometimes nonverbal; feedback that tells me my delivery can be hard for them to take. They tell me, “Slow down.” “Be still while you’re talking to me.” “Keep your hands to yourself.” I tried to temper myself so that I could communicate effectively in a manner that I assumed she would prefer.

“Different, not less,” is what Temple says. I’ve always assumed she was referencing people with autism and other intellectual disabilities, that it was them who are different but never less. But in the first few minutes of that phone call, I realized it is me who’s different, not Temple.

I use 20 words when five would suffice. I muddle my message with excessive body language, intense eye contact, rapid speech and frequent, unexpected changes in topic. I dilute the effectiveness of my communication by going off on tangential rants, mixing emotion with facts when trying to persuade others or win them over.

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Halfway through our 17 minute phone call (yes, I checked the phone log to be sure how long I had actually been able to talk with her), I started to relax. She asked me lots of questions about our community and the purpose of our event. When I told her that we hope to motivate and inspire our community of thought innovators to find new ways to integrate people with autism spectrum disorders into our workplaces, she was enthusiastic and excited. She told me, “Good job!” when I described the panel of local scientists, advocates and employers who will be asking her questions after her speech. She said, “I look forward to meeting you,” when the call was coming to an end. When we hung up, I was elated…I did it! I managed to carry on a conversation with someone I revere and won her over despite my communication disorder.

Because yes, I’m the one with the communication disorder, not Temple. She has learned, after years of diligent practice and observation, to tailor her preferred communication style to match what we call “normal.” She has mastered the art of listening and uses language in a measured, appropriate and careful way that allows her to connect without nuance or hidden agendas or emotional baggage that should have no place in our communication with each other. She says what she means and she means what she says.

I can’t say that about myself all the time, as my communication is too heavily influenced by ego. I’m too busy preparing my response to someone to truly listen to what they are saying in the moment. I have trouble zoning in on the most important point of whatever I’m saying because random thoughts and subtle manipulations are constantly zigzagging through my brain, bursting through my filters and muddying the water of my point. I rely on emotion, not facts, too often. I tell myself that I’m an effective speaker because I am exceedingly verbal but 17 minutes with Temple Grandin left me with the stark realization that it’s not Temple who’s different…it’s me.

Temple says, “Different…not less.” I always applied that sentence to the people with special needs I work with, never to myself. But the call with her showed me that deciding who and what is “different” is malleable and depends on your perspective. To me, people with autism are “different” but to them, I’m the one with deficiencies. When you boil it down to its most elemental message, “Different…not less,” applies to all of us. Each of us is different from the other and none of us is less.

For 10 years now, I’ve said that we are all more alike than we are different and that we all have special needs. Thanks to one conversation with Temple, I realize that there’s so much more to it than that. We are ALL different in subtle and obvious ways. Each of us is born with our own unique set of challenges and dysfunctions that are further ingrained through our social interactions. Each of us has a particular slant through which we see each other, the world and our places in it. It will be a better world when we all learn that Temple isn’t different, nor is anyone with a physical or intellectual disability.

WE ARE ALL DIFFERENT. AND NONE OF US IS LESS.

What problems could we solve if we approached everything with that mindset? What new friends could we make? What new ways of doing things or what new insights could we uncover if we all just accepted the reality that no two of us are the same and none of us is perfect. No one is right and no one else is wrong in their approach or thought process or communication style because we are all unique, born exactly the way we were supposed to be.

 

I am different. And so are you. But I am not less and neither are you. If I learned this much about myself from 17 minutes with Temple, I can’t wait to learn even more powerful insights from her next week.

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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!

On Taking A Child With Autism To Public Places

You’ve probably heard about the Broadway actor, Kelvin Moon Loh, who took to his Facebook page to state his dismay over the behavior of the audience at last Wednesday’s matinee of The King and I. If you haven’t, you can read all about it here.

Kelvin Moon Loh...my newest hero!

Kelvin Moon Loh…my newest hero!

In a nutshell, a mother took what Loh assumes was her autistic son to a matinee of the Broadway hit and during a particularly intense scene, the child had some sort of outburst. Audience members turned on the mother, some saying things like, “Why would you bring a child like that to the theatre?” The show continued, despite the interruption caused by the child and subsequently by the audience but the actor was clearly upset over how the audience treated the mother and the child.

Children’s misbehavior, and their parents’ reaction to it – or lack of reaction to it – was in the news back in July, when the parents of a toddler went to a Maine diner. The diner owner reportedly screamed at the toddler and threw the family out of the restaurant because the toddler was disturbing other customers. The social media maelstrom that resulted from that story had people taking sides about when and where it’s appropriate to take small children. Thousands of people commented on this story, some stating that children shouldn’t be taken to restaurants at all, others believing that children should be welcomed in public places regardless of their behavior, and pretty much everyone who weighed in on the matter acted like an asshole.

Who knows what really happened in that diner but we should all be able to agree that there are certain types of restaurants where we should not take our children – the white tablecloth, expensive kind for sure – and others (like diners) where children should be welcomed, even when they cry or throw sugar packets or act like heatherns. Whatever happened, the story stirred up some powerful opinions on both sides of the argument that mostly left me glad that my children are now adults (although that does not necessarily preclude them from acting like assholes in restaurants).

This theatre matter is different, though. First of all, a ticket to a Broadway show is exorbitantly expensive. No one wants to have their Big Deal Moment ruined by someone else’s rude behavior…like the time Alan and I went to a Broadway matinee with another couple and the man bought M&M’s at intermission. This highly-educated, rarified friend of ours sat down for Act II and proceeded to extract one M&M at a time from the package, as opposed to pouring a few at a time into his hands, which resulted in a loud and annoying crinkling noise every few seconds. I was cringing but trying to ignore it when the man on the row in front of us turned around and hissed, “Would you stop rattling that damn paper?” Of course, when he said this the ripple of who was affected by our friend’s candy munching spread even further.

Or what about cell phones in the theatre? How obnoxious is that? Celebrities like Madonna have been chastised for texting during Broadway performances. Patti LuPone stopped a performance to rant at one cell phone user and swiped the cell phone of another. Then there are the show talkers (who whisper/talk to each other during performances), the nitwits who repeatedly get up from their seats and the jerks who ignore the pre-show requests to refrain from flash photography. Clearly, it’s not just children who can disrupt a performance.

There are two things about The King and I story that bother me. The first is that the show is billed as “family friendly” which I take to mean that children are welcome. And anytime you invite children to attend something, you have no way to know what to expect. Take a child to a dark theatre, put live action on the stage in front of them and who can predict what might happen, even from the most well-behaved child. Don’t bill your show as “family friendly”- and don’t buy a ticket to a “family friendly” production – if you’re not prepared for anything from screaming fits to poopy diapers.

Kelli O'Hara and Ken Watanabe on Broadway

Kelli O’Hara and Ken Watanabe on Broadway

The second thing that bothers me about this story is more important, I think, and it’s this…how did anyone know this child has autism?

I know a lot of people with autism and most of them do not have any physical characteristics that give an indication of their diagnosis. Did the audience assume the child had autism because of the nature of his outburst? Because I know plenty of children who don’t have a diagnosis of autism who can behave atrociously.

And more to the point, what difference does it make if he had autism or not? He was a child, taken by his mother to an appropriate event, a child who had a strong negative reaction to something that occurred on the stage. Any child could have reacted in the exact same way. Would the audience have been more compassionate towards a “normal” child?

kid with autism

Many parents of kids with autism have told me that one of the most challenging aspects of their child’s diagnosis is the fact that they appear to be typical kids, making their inappropriate behavior more difficult for strangers to understand. Many of these parents have told me they’ve been publicly shamed or chastised for not properly “disciplining” their children too many times to count.

“Can’t you make her behave?” they’ve been asked or “If he was mine, I’d whip him” others have said. “If my child had an obvious physical disability or a condition like Down syndrome, people might be more understanding of his odd behaviors or frightening outbursts,” one parent told me.

Taking a child with autism to a public place can be torture – for the parent and for the child. No parent wants their child to be upset or to unintentionally upset someone else. Autism can hijack not only a child’s life but the life of their family as well.

So what are parents to do? Children – with autism or without – learn by doing so we have to take a risk and take them to that restaurant or that party or that musical.

We have to prepare them for what they can expect and we have to do our best to plan for every possible contingency.

We should remember the question Loh posed in his Facebook post…“When did we become so concerned with our own experience that we lose compassion for others?”

kids with autism

So, you can act like an asshole to someone who’s child is misbehaving because you assume they aren’t doing a good job parenting. Or you can be a human being and show some empathy.

And you can assume a child is autistic or you can realize that an autistic child is a child, first and foremost.

 

 

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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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