| It is the third time Ive watched the Sue Rubin | | | | The Rubin documentary certainly opened up a |
| documentary, Autism is a World. It has | | | | different perspective of the kind of challenges |
| led me to consider very strongly how I and we as a | | | | confronted in the autistics world. Montgomery |
| neurotypical (normal), nondisabled society perceive | | | | also illustrates in her writings another challenge of |
| disability both as professionals and nonprofessionals. | | | | making her way in a world that is focused on those of |
| In the world of autism or any other disability, these | | | | us who walk through our lives in what is called |
| individuals are at the mercy of what others believe to | | | | normal. |
| be their capabilities. It colors what needs and services | | | | Montgomery wonders about how others |
| are provided and the monetary support given to | | | | perceive her condition. She says, we are -- right |
| expand their capacity to the fullest. What is ultimately | | | | now, anyway -- both identified as bright |
| at stake is their freedom to be who they | | | | by a whole lot of people who clearly believe that |
| are, despite the disability, at all levels. | | | | some other people are mentally retarded |
| Do we treat them as equals, or do we treat them as | | | | according to the usual stereotypes. Rubin herself |
| children needing to be controlled to fit into the world | | | | doesnt come right out and say it, but the |
| called normal? | | | | impression she gives is that she, unlike some other |
| Sue Rubins story could have been very | | | | people, is not mentally retarded. We are both clearly |
| different if someone had not had the foresight to give | | | | capable (except to those people who refuse to |
| her a facilitated keyboard at age 13. Until that time, her | | | | believe that autistic people using keyboards are |
| mental acuity measured at an IQ of an early toddler, at | | | | saying anything at all and, in my case, |
| best. Once she began to communicate, her IQ tested | | | | those people who believe that anyone with an IQ |
| at 133. Although her loving, supportive parents did not | | | | score under 85 is by definition incapable) of benefiting |
| succumb to the belief that she should be | | | | from formal education. |
| institutionalized, they did believe the best they could | | | | There is among the autistic community a very real |
| hope for her was to clean tables like other | | | | concern of people wanting to take steps toward the |
| retarded individuals. | | | | genetic elimination of autistic people. Amanda Baggs, |
| Rubin even wonders if perhaps she was retarded | | | | writes on Autistics.org, I know what it is to read |
| during those early years. She says it was like | | | | in the papers that people who want people like me |
| awakening when she finally found a way to | | | | eliminated are acting out of love. To read that when a |
| communicate. And throughout her life ever since, she | | | | lot of people like me are born, it is called an |
| has had to work to minimize the affects that often are | | | | epidemic. I consider these things to be |
| disconcerting to the neurotypical people she meets in | | | | extremely painful, and unfortunately all too common. |
| public. | | | | But they are not the result of autism. They are, in fact, |
| How often have we witnessed nontypical behaviors | | | | the result of ideas similar to the ones that make people |
| we see in others and judged them to be retarded and | | | | seek out prevention and cure -- the idea that it is |
| different. We believe they are unaware of the stares, | | | | better to eliminate autism and autistic people rather |
| the efforts to avoid eye contact or face-to-face | | | | than adjust to our existence. |
| encounters. | | | | Baggs then challenges, Talk to autistic people -- |
| Addressing a conference at Whittier College where | | | | not as if we were damaged versions of yourself. |
| she is majoring in history, Rubin said, You think | | | | Forget what you think you know about us, and learn |
| its hard to be autistic, try getting into | | | | about us and, most importantly, from us. You might be |
| college. | | | | surprised, at the combination of differences and |
| As the camera scanned the audience, the group of | | | | similarities between what we want in life and what you |
| young autistic men and women were visibly | | | | want in life. Approach us without the preconceptions |
| encouraged. They hope to make the journey, too. | | | | of what you have been taught about autism, and what |
| "I decided to make this film to bring people into my | | | | you believe about people in general, and you will see a |
| world of autism... 'Autism' is a world so difficult to | | | | lot. Explore the uniqueness and beauty that is autism, in |
| explain to someone who is not autistic, someone who | | | | all its forms, respect it, and don't try to eliminate |
| can easily turn off the peculiar movements and actions | | | | it. |
| that take over our bodies," Rubin explained in the | | | | Baggs then presents us with a serious consideration of |
| documentary. | | | | the world she envisions. Imagine what it would |
| She presents behaviors, like holding spoons for | | | | be like in a world where people were valued as who |
| comfort, verbal and physical affects and self-injurious | | | | we were, not what we could do. Where the very real |
| incidents, which to others are disconcerting and create | | | | differences were not seen as defects, but valued |
| a distance if misunderstood. Most are unaware that | | | | instead. Where equality was not based on similarity. |
| beneath the behaviors is a 26-year-old woman who | | | | Where our lives were considered of value simply by |
| goes to college, makes presentations at conferences, | | | | virtue of being lives, not by virtue of how much work |
| and was the impetus behind the documentary she | | | | we could do at a job or how much help we need from |
| saw come to fruition. In addition, she struggles daily | | | | others. Where, upon finding out that your child is autistic, |
| with trying to control the affects she presents. | | | | instead of the grief or horror you may have felt for |
| In her review essay about Autistic Lives | | | | your child's future or apparent incomprehensibility, you |
| for Ragged Edge.com, Cal Montgomery writes that | | | | would be immediately excited and grateful for your |
| although she doesnt agree with all Rubin has to | | | | child's uniqueness. This would be a much better place |
| say, I think it's significant that she has been | | | | to grow up autistic, or to raise an autistic child. This |
| enabled to say it, that she has chosen to say it, and | | | | world is possible. |
| that she has said it to such a wide audience. To do so | | | | Is this world not the same world to which all human |
| she's had to get access to technology and training so | | | | beings are entitled -- normal or not? It |
| that she can say it in the first place. | | | | seems to be that we still have a long way to go to |
| Montgomery herself is autistic with fewer support | | | | extend to nonneurotypical citizens the assurance of |
| services in terms of having round-the-clock assistance. | | | | their equality and rights to access the tools to achieve |
| Unable to speak verbally, she demonstrates affects | | | | and to live their lives. |
| like self-injurious behavior and is confined to a chair. | | | | I have come to believe that in the perfection of |
| She discusses the very pessimistic prognoses that | | | | creation, disabilities are part of that perfection. It is said, |
| were powerful and official. Only after | | | | Some people come to the world to learn, others |
| achieving enough that people were willing to | | | | come to teach. I have been taught by these |
| overlook what the professionals say, was she given | | | | astounding autistic writers to learn about their |
| the chances that many autistic people never | | | | contribution to the perfection of this world intended by |
| get. | | | | the Creator. |