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.

temple-quote

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.

temple-grandin-cow

 

 

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.

You Too Important

Katie and Carolyn have worked at Merrimack Hall for two years. When a business hires a person with special needs, they gain so much more than just an employee. Here are some things that business owners might not know about hiring people with special needs:

  • most people with special needs would be happy with a part-time job, not full-time
  • in some cases, people with special needs can be paid less than minimum wage; in all cases, they would much prefer to have some income rather than no income
  • job coaches are available to help train and supervise people with special needs, if your business is not able to do this
  • organizations like The Phoenix Corporation can come into your business and identify ways you could create meaningful jobs for people with special needs
Katie and Emma

Katie and Emma

There are many intangible benefits to having people with special needs on your payroll, such as the diversity and unique perspective they can bring to the workplace. Here are two examples of how Katie has had a positive impact on me at work:

Katie wears an insulin pump and each day after lunch, she pricks her finger, calls her mother to report the number on her pump and adjusts her insulin dosage. Without fail, once she receives her insulin, Katie goes into the lobby to sing a song. It doesn’t matter what’s going on in the lobby…it probably wouldn’t matter if the building was on fire. Nothing interrupts what we’ve affectionately come to call Katie’s “Sugar Song.” For about 20 minutes, she sings at the top of her lungs about anything and everything, but most often, the Sugar Song is about herself. Her songs have no set rhythm or rhyme and typical lyrics might be:

I so beautiful.
I so happy.
I love my cat.
or
I a princess.
I wear pink.
I the best worker.

Katie and Rachel

Katie and Rachel

I decided to try a Sugar Song for myself a few weeks ago. I was tense, worried about a grant deadline and acting a bit testy. So, I grabbed a Snickers bar from the concession stand and after I ate it, I sang – at the top of my lungs. I don’t know if anyone heard me or not but, like Katie, I decided I didn’t care. My lyrics, sung to the tune of “You Are My Sunshine” were:

I am amazing.
I’m so amazing.
I’ll get this grant cause I’m the best.
My mission is the
Most compelling
My grant will blow away the rest.

And it worked! I felt less anxious when I finished my Sugar Song. And low and behold, last week I got an email notifying me that I had indeed received the grant – a $10,000 grant to establish a leadership development program for our volunteers. Sugar Songs are going to become a regular part of my day from now on.

The second example happened a few months ago. Katie was eating lunch by herself in our kitchen and I was on a frantic search for something – don’t remember what. I darted past the kitchen table about 5 times, going into people’s offices, out the back door and in again, up to the lobby and back. Each time I passed the table, Katie offered me a different greeting.

Hi, Boss Lady!
or
You look cute, Debra!

I responded with appropriate comments but never slowed down until finally, Katie stood up from her chair and said:

Hey! Slow down! 

Of course, I obeyed. Then Katie said:

Why you hurry so much? You think you too important.

Well, that put me in my place. Why was I hurrying? Katie never hurries or rushes and neither should I. When I’m on some self-important mission, I’m not doing anything but stressing myself out – and probably stressing out those around me at the same time. Katie was right…I’m just not that important and neither is anything I have to do that requires me to hurry so much that I can’t stop and engage in a polite conversation with my teammate. Thanks to Katie, I’m going to slow down…and sing a song every now and then.

Katie and Me

Katie and Me

If you’re interested in hiring someone with special needs, I’d love to hear from you! I would be happy to connect you with resources to facilitate the hiring of someone with special needs. I can also recommend any of the dozens of adults in my program who would be thrilled to have a part-time job and who would bring enormous benefit to your business.

Warning: Thoughts on Labels

Atlanta Cami and money

Cami handing me the $2 she caught & donated to Merrimack Hall

Labels. They are everywhere we look…on our food, on our medicines, on our clothing. Labels are descriptive, informative, sometimes even life-saving but they are also limiting and narrow. They can help us navigate the world and they can help us make informed choices but labels also prevent us from forming our own opinions and being open to new things. When labels are assigned to people, they can predispose us to judgment and can prevent us from seeing someone for who they really are.

The students in my visual and performing arts programs have to live with labels that are assigned to them by our society…relatively innocuous ones like different, disabled or developmentally delayed and offensive ones like retarded, odd or weird. These labels are based on the diagnosis they’ve been given. Roughly 20% of the US population has special needs and for them, a diagnosis is a useful thing to have – a diagnosis gives them access to services that improve their lives, can prepare organizations like mine to meet their needs and can help educators assess them for appropriate placements. But the labels that accompany the diagnoses are never useful.

Our society claims to celebrate diversity, to embrace the differences between us and yet we rely on labels to categorize, stereotype and pigeon-hole each other. I want to know why. Is it just convenient? Does it make it simpler for us to avoid people or things that might make us uncomfortable? Do we label folks so we can decide who to let in and who to exclude from our lives?

I’ve had to learn a lot of acronyms over the past six years like PDDNOS – pervasive developmental delay not otherwise specified. This is a mouthful that basically means that a person is not developing at the rate of his or her typical peers and their symptoms don’t match up to any existing diagnosis. Some of my students don’t even have this diagnosis – some just don’t learn or develop the way most of us do and there’s no way to explain why. Not having a diagnosis presents its own challenges to my students and their families. Even one as vague as PDDNOS is better than no diagnosis at all.

Cami performing at our 2013 holiday showcase.

Cami performing at our 2013 holiday showcase.

Take Cami, for example. Cami is 14-years-old and has been with JSAP for five years. She attends an alternative school where she is in a classroom equivalent to a 5th or 6th grade class in a typical school. There is no medical explanation for the delays in Cami’s development so, like a lot of people, she falls into a category that’s basically like, “We don’t know what’s wrong, we just know that something is.” In the absence of a diagnosis, the labels kick in on overdrive.

I could use a lot of labels to describe Cami that tell you a lot about who she is – teenager; female; brunette; visual artist; stage performer. I can’t even let myself think of the negative labels that some people might use to describe or categorize Cami. I thought I knew Cami pretty well but last weekend I discovered something about her that I didn’t know – something that has given me a new, better label for Cami. Cami is a philanthropist.

Cami and her teammates in Project UP were in Atlanta at the NRG Dance Project Competition. During the awards ceremony at the end of the evening, NRG founders Nick Gonzalez and Rustin Matthew announced that they were about to do something unprecedented and exciting. The 200+ dancers who were sitting on the stage leaned forward in anticipation, holding their breath to hear what this great thing would be. Nick and Rustin told the kids to look to the ceiling and count down from five. After everyone counted down “5, 4, 3, 2, 1,” 2,000 $1 bills floated down from the ceiling! As it rained money on them, the dancers reached for as many bills as they could grab. No one was too aggressive about it but it was clear that all 200 kids on that stage sure did want to catch some of that free money.

When the competition was over and the last award had been handed out, Cami found her way to me, holding out two $1 bills and smiling sweetly.

“Wow,” I said. “Congratulations, Cami! I’m so excited for you that you caught two dollars!”

“I caught it for you,” Cami answered.

“For me?”

“Yes ma’am. I wanted to catch some money for you to put in the donation box at Merrimack Hall.”

Knowing Cami the way I do, I know it took a lot of guts for her to join in the fray and attempt to catch those dollars. I’m sure she was overwhelmed by the noise, the crowd, the other kids who were grabbing for the same prize she was. Other kids were probably trying to catch the money because it was fun, or because they are competitive, or because they wanted to buy a frappe at Starbucks. Not Cami…she wanted to catch some money so she could give it to me to use at Merrimack Hall.

According to Webster’s, a philanthropist is “a person who seeks to promote the welfare of others, especially by the generous donation of money to good causes.” That label fits Cami – and many of her teammates who have asked for donations to our program in lieu of birthday gifts – much better than of the other labels she has been given. Until we get to the point where we actually do celebrate our differences, wouldn’t it be nice if the labels we gave to each other described who we are on the inside instead of what color our skin is or where we worship or what our sexual preference is or what we can or can’t do?

The people with special needs that I know live with labels that predispose others to judge their abilities before they ever have a chance to show someone who they are. In an effort to provide services, mainstream and include, our society tells us right off the bat that a person with a disability is different from the norm – physically disabled or developmentally disabled are the first labels my students are given and those labels follow them for the rest of their lives, everywhere they go and in everything they do. It didn’t take me long to realize that none of these labels is accurate and if you spend a little time around people with special needs you’ll realize it too. Once you start thinking about the negative nature of labels for one group of people, you’ll find yourself noticing the negative nature of labels for any group of people.

Labels on people should come with their own warning label, something like, “WARNING – this label is not adequate to describe the person it is being assigned to and is possibly being used to facilitate exclusion, bias and discrimination.” If a label carries with it a negative connotation, we should mark that label “expired.”