What would happen if being different…just meant being different?

Rigid academic and social expectations could wind up stifling a mind that, while it might struggle to conjugate a verb, could one day take us to distant stars.                                                                                                                                                                                                                                                               www.templegrandin.com

April is International Autism Awareness Month. It is so designated to raise awareness about autism and to promote the concepts of inclusion, self-determination, acceptance, appreciation, and the opportunity for those with autism to achieve the highest quality of life.

When you hear the word autism, what is the image that immediately comes to mind? What words do you use to describe someone with autism? Whose face do you imagine?

I suspect that the first image that comes to mind is not the face of Einstein or van Gogh or Steve Jobs. And yet, according to the 2013 American Psychiatric Association’s revised definition of autism, the spectrum can range from brilliant inventors and creators to those who are not capable of feeding or dressing themselves. Autism is part of a continuum with a broad range. Many of our most capable and creative leaders may touch on the spectrum.

And yet, we tend to label those with autism as disordered or abnormal, with an irregular pathology. We tend to make assumptions based on our experience in the media or in life. We assume that our experience is the prevailing reality.

What if we were to look at those who are not like us as just… different? What if we didn’t socially pathologize autism, or, for that matter, any type of developmental—or cultural—or economic—or social—difference?

All of us are different in some way. We each have our own biological and cultural differences, which many of us hide or keep secret because we don’t want to be labeled. Some of us come from extreme poverty. Others of us are recovering addicts. Some of us have been incarcerated. Others of us are over 55. For each of these “populations,” there is an overarching definition or label that does not necessarily account for our strengths, our abilities, our talents, or the things that make us unique.

Temple Grandin is a remarkable advocate for autism awareness. She is a professor of animal science and a consultant to the livestock industry. In 2010, she was named by Time Magazine as one of the 100 most influential people in the world. When she was two years old, she was diagnosed with “brain damage.” She came from an affluent family who could afford tutors and nannies and other helpers to guide her through school. Otherwise, she would have been institutionalized as most people like her would have been. Dr. Grandin uses her strengths—her ability to see things differently from those of us who are labeled as “normal”—to not only create and invent methods for keeping livestock, but also to raise awareness about autism. (For an animated interview with Dr. Grandin, check out this interesting video: https://youtu.be/Ifsh6sojAvg)

Dr. Grandin is just one example of what could happen if we were to question our assumptions about the labels we tend to assign to others.

What words might we use to describe those who are different from us in a way that doesn’t pathologize or stigmatize them?

What is it we think we know about another person?

As always, I welcome your thoughts.

Responding to Difference with Interest

One of the greatest joys of all time is watching a small child as she or he discovers something never seen before. She asks (sometimes over and over again), “What’s that?” “What’s THAT?” And, as a patient adult, you answer—after all, you have the opportunity to introduce the child to the world through your eyes, with your perspective. If you’re like me, you love the natural curiosity, as it is a reminder of what it is like to experience the world anew.

Research tells us—as does our experience—that children view things that are new—or different—with great interest and curiosity.

But what happens when a child sees someone moving in a wheelchair, or walking with a white cane or making unfamiliar noises? Natural curiosity would lead them to ask questions: “Why is that person in a chair with wheels?” “What is that white cane for?” “Why does that person sound like that?” These are natural questions that reflect a healthy interest in the world.

How we respond to those questions is the critical moment. When we respond by pulling the child back and saying, “It’s not nice to ask that question,” or, “Don’t point,” or whatever we do to divert the child’s focus on the other person—in that moment, we spawn discomfort, and potentially, fear.

And this becomes the next generation of stigma. This is how we create a sense of “other.” This is how those with disabilities become “them,” and not “us.”

In her essay, Stigma, An Enigma Demystified, Dr. Lerita Coleman Brown writes about the origins of stigma. She suggests that all of us carry with us a fear of being seen as different or separate from the rest of society—an “other.”  Any one of us, she posits, could become stigmatized at any time, given how rapidly our culture shifts over time.  For example, as we age, our status changes, and, in some cultures, age gives us increased status. In others, ageing decreases our status. And when we lose status, we lose power. Losing power means losing advantages and ultimately, losing control about the choices we get to make about our lives.

In addition, those who find themselves in a category or population that is stigmatized in one way or another become defined by our “otherness,” or what could be considered our disadvantage by those who are yet not stigmatized. We become part of what I referred to in an earlier post as a “single story,” defined by that “otherness” such as our heritage or our disability or our politics or our age or economic status, just to name a few ways of exclusion and segregation. If we have gifts or talents that are outstanding, they are highlighted in spite of our “otherness.”

I believe that stigmatization happens on both a conscious and an unconscious level. It is part of a defensive posture that many use to protect themselves from the exclusion that stigma brings. It is part of the message that is passed along to us as children when we are told to be polite and not point out differences. It is passed along in messages from the media and from opinions handed to us by those in authority.

But what if we were to respond to difference with respectful interest instead of fear? What if we allowed the questions: “What is your life like in that wheelchair?” “How do you know it’s safe to cross the street if you cannot see?” What might be the result?

I would suggest that the result would be greater empathy and ultimately, greater understanding of what it is like to be in another’s shoes.  We might come to discover that the “other” is, in fact, very much like us. We might be inspired by them—and ultimately, by each other. It would require that those of us in both the stigmatized and non-stigmatized groups be willing to have the conversation.

We all want to be part of the non-stigmatized majority. If we were to work together, we could indeed all be part of the that majority if we would reshape our thinking and our language. “Them,” then, becomes “us.”

This March, as part of Developmental Disabilities Awareness Month, I ask: what would it take for us to recognize our own unconscious stigmatization of others—no matter what the difference might be? And ultimately, what would it take for us to turn to the world of differences with respectful interest instead of fear and discomfort?

I welcome your thoughts and responses.

The Assumption of Greatness

I have spent a lot of this year thinking about the concept of equity.  It has been my observation that too often, disenfranchised groups internalize a limiting narrative and a sense of “less than” rather than one of possibility and optimism.

Changing that narrative is both a public and personal imperative.  In the simplest terms, when you believe that achieving a dream is possible…when you believe that you have options and choices success seems within reach . . .and positive action follows.  When people believe in themselves they usually act!

But telling people that there are possibilities is not enough.

Significant change must occur at an institutional and practice level.  Part of our work here at Fedcap is to ensure that each and every day we promote and embody aspirational thinking—among ourselves as well as instilling this belief in those we serve.  But equally, and maybe more importantly, we need to find a way to expand access to people who promote aspirational thinking.

In 1931, writer and historian James Truslow Adams coined the terdream-the-impossible-seek-the-unknown-achieve-greatnessm “American Dream” which he defined by this statement: Life should be better and richer and fuller for everyone, with opportunity for each according to ability or achievement regardless of social class or circumstances of birth. I am convinced that it is not just those who have been left out of the American Dream who have internalized a sense of limitations.  I sometimes think it may be those of us who are doing the “serving” who also limit our aspirations for ourselves and for others.

In other words, whether we are talking about people with disabilities, people who have been subject to generational poverty, or the previously incarcerated, what “society” or “helpers” or schools believe shapes how we help and how hard we push those we serve and how we define potential. Those of us in the practice of helping, teaching, mentoring and supporting must examine our own beliefs, challenge them critically, and be ready to flip the orthodoxies we assume so that we, too, are willing and able to change. And, as our thinking changes and evolves, so will the systems with which we interact will begin to shift as well.

We all must fundamentally believe everyone can achieve greatness.  Greatness is not necessarily defined as something huge and momentous. Sometimes greatness and change can come incrementally but still yield seismic shifts. For example, the very act of having a college savings account—even less than 500.00—makes a child three times more likely to enroll and four times more likely to graduate from college?  Why? Because the savings account makes a young person believe that college might be possible and attainable.

I wonder what would happen if our helping systems were designed not as a safety net to catch–but as a trampoline to help people soar.  What if they were designed not merely to keep people from falling through the cracks—but to build a solid foundation for success— a legitimate pathway to greatness.  What if every system presumed and assumed greatness—for everyone?

What would that take?  What kind of rethinking, restructuring, re-imagining would be required?

What are your thoughts?  How can we shift the paradigm to assume greatness for everyone?


Disability is Difference: What’s next?

Disability is a natural part of the human experience…

–The Developmental Disabilities Assistance and Bill of Rights Act

Those nine words that begin the preamble of the Developmental Disabilities Assistance and Bill of Rights Act represent a huge paradigm shift in the way we view people with disabilities—and barriers—to self-sufficiency. To parse that phrase even more clearly, one might simply say: everyone is different. Not exactly a revolutionary concept, yet somehow people with disabilities and barriers have had to fight for their rights over centuries-old stigma and misunderstanding. People with disabilities—and barriers—it appears, are seen as more different.

We’ve come a long way since the days of laws like the “Ugly Laws” that were passed in the American colonies in the 1800s and not fully repealed until 1974, when the city of Chicago took the laws off their books. In shocking language, the Chicago Municipal Code Sec. 36034 stated, “no person who is diseased, maimed, mutilated or in any way deformed to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view…” These laws were echoes of many, many years of prejudice, widely accepted not just in the U.S. but all over the world. We all know there are many horror stories of how people with disabilities were treated—and mistreated—throughout history, which is of course why laws, like the Brown v Board of Education, the Architectural Barriers Act, Individuals with Disabilities Education Act (IDEA), and The Americans with Disabilities Act exist today.

Conditions for people still vary from state to state, for example, not all states have embraced full employment for individuals with intellectual/developmental disabilities. Those states that have report story after story of individuals who were once believed unable to work in the competitive workforce  living lives they had not dreamed possible.

What of the future? It is only within the last sixty years that our legal landscape has helped alter how society views those of us with disabilities. Yet the prejudices still linger. People still see individuals with barriers or with disabilities—or differently advantaged—as the “other”—as “them,” not as “us.” There is an inherent prejudice that exists, which I believe is based in fear—fear of the unknown. Unless we are able to place ourselves in another’s skin, we cannot begin to understand what their life is like. What will it take for us to lessen our fear, lessen our “unknowingness,” and ultimately to accept that we are all different, indeed.

I look forward to the day when we just think of ourselves, all, as different. Is there a seismic shift that needs to happen, or do we continue with chipping away at expanding the existing laws? How do we inculcate change in our culture that extends beyond the laws? What is one thing that we can do today to help move our momentum forward at warp speed?

As always, I welcome your thoughts.