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The Invisible Elephant

By: Gabrielle Makower

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TABLE OF CONTENTS Dedication......................................................................................................................................... 4 ForEword.......................................................................................................................................... 7 I. Introduction................................................................................................................................... 8 II. Where Are All The Disabled Adults? ..........................................................................................13 III. The College Of Adaptive Arts......................................................................................................20 IV. Conclusion...................................................................................................................................2 Works Cited......................................................................................................................................30

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DEDICATION I dedicate this book to both Pamela Lindsay and Deanna Pursai. Thank you so much for all of your help and support throught this process. Thank you for taking us in and letting us learn about the loving College of Adaptive Arts community.

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Foreword The first time I had ever heard about The College of Adaptive Arts was through my friend, Jen Pleimann. She works at “FIT” and is my parent’s physical trainer. We went on a trip with Jen to Italy when I was much younger, and she would occasionally babysit for me and my sister when my parents would go out of town. She would tell us about this program that she created called “FIT Buddies.” It’s a program where people who have developmental disabilities can come and get exercise at “FIT.” When trying to think of a topic for the documentary unit, I contacted Jen to ask if “FIT Buddies” was a non-profit, since that was the type of program my partner, Lora, and I were interested in. She told us that “FIT Buddies” was not, in fact, a non-profit, but she connected us with the Co-Founders of The College of Adaptive Arts (CAA). Jen also sits on the board of CAA because she strongly believes in their mission. Things progressed and my interest grew for the college. I visited the CAA website and noticed that they were hosting a film festival for films that were “about disabilities or made by someone with a disability.” Conveniently enough, I just happened to make my narrative film about dyslexia, so I submitted my film. When attending the film festival at AMC theatres, I met many of the students at The College of Adaptive Arts. I realized what a friendly, joyful community they fostered and I was intrigued. Later the next week the two Co-Founders, DeAnna Pursai and Pamela Lindsay, came to my home and they spoke with me and Lora about the idea of featuring their organization in a documentary film. They were both lovely people and they shared a lot of information with us. They were eager to help us with this project all the way through. We were lucky to find such supportive and welcoming people. They did, however, inform us of the issues that The College of Adaptive Arts faces, and Lora and I were appalled. We didn’t even know these issues existed. This inspired me to create this film/ documentary paper. I want to open people’s eyes to this invisible issue that affects not only our local community, but our entire nation. 7


I. Introduction

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Sometimes we look at life too simplistically. Humans tend to be very self-absorbed and we often are only aware of problems that concern us or people we personally are close to. But what about those really big issues that affect only a small portion of our community? Should they be forgotten? A large invisible problem concerns those with disabilities, specifically adults. The invisible elephant. According to the 2010 U.S. Census Bureau, approximately nineteen percent of the population claimed to have a form of disability, where more than half of these people’s disabilities were severe (“Newsroom”). Taking this into consideration, one out of every five people in the United States would have had a disability of some kind. Of course, there are many different types of disabilities. These differing disabilities, however, can range from something as invisible and non severe as Dyslexia, to something as physically altering and serious as Down Syndrome. For just a brief overview of two common disabilities, I’ll explain Down Syndrome and Autism. About 1 out of every 691 babies born in the United States are born with Down Syndrome (“Down Syndrome”). Down Syndrome is a chromosomal condition, where the individual is born with either a partial or an extra copy of chromosome 21. Approximately forty percent of people who are diagnosed with Down Syndrome have congenital heart defects (“Facts About Down Syndrome”). People with this disability have a life expectancy of around fifty-five years of age. Furthermore, if you’re a woman and you’re planning on having a child at any age above forty, you may


want to think twice. The older a woman gets, the greater chance is that her child will born with Down Syndrome (“Facts About Down Syndrome”). Now, autism... there are different degrees of how severe someone’s autism can be. For some people it can be very subtle, and won’t affect the individual’s quality of life very much at all. For others, however, it can be extremely limiting. Autism is a bio-neurological developmental disability. Approximately 1 out of every 54 boys is diagnosed with autism, and 1 in 252 girls (“Frequently Asked Questions”). Autism commonly impairs a person’s ability to have conversations (verbal or nonverbal), social interactions, and getting along with others in leisure or play activities (“Autism Fact Sheet”). Common conditions or risks associated with autism may include asthma, epilepsy, persistent viral infections, and sleep disorders. Autism is a mental disorder; you cannot physically tell an autistic person apart from someone without autism. Over the years the amount of people born with autism has been increasing and people don’t seem to understand why (Falco). People with disabilities of any kind unfortunately tend to have a stigma cast upon them. A stigma is a mark of disgrace associated with a particular person, in this case, those with disabilities. In our society we fail to acknowledge the fact that certain people with disabilities are high functioning adults. For instance, in California every year they have a pageant for Miss Wheelchair California. This competition selects the most accomplished and articulate woman to represent millions of Americans with disabilities (Barajas).

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This year’s winner, Shira Leeder, is a graduate from UC Berkeley. Ms. Leeder has cerebral palsy and brain damage, yet has managed to become such an influential figure for all disabled people in California (Leeder). I met Shira, and it was extremely difficult for her to speak due to her condition. She used a computer to speak for her since she was unable to do so herself, but the words that were expressed through the computer sounded like they could have been coming out of a professor’s mouth. She had trouble staying seated and almost fell out of her chair a number of times. It was as if she had no control over her body. Shira is an extremely intelligent woman, but at first glance, nobody would assume so. This stigma our society casts upon adults with disabilities is appalling and must be withdrawn. It is often thought that a person with a developmental disability will never exceed the intelligence of a five-year-old. But is this actually true? These adults don’t only grow intellectually but they grow emotionally too. These individuals have the same emotional needs as any other person would. As quoted in Judith Greenbaum’s book, “Life Planning for Adults with Developmental Disabilities”, she elaborates on this idea by stating, “Many people are heedless of these feelings because they don’t recognize them (and don’t even believe they exist) in people with developmental disabilities” (54). Dr. Greenbaum expresses society’s blindness towards the idea that these adults, just like anyone else, feel and experience the same emotions as we do. The stigma cast upon these individuals is extremely upsetting and their opportunities to succeed are limited as a result. Once these adults reach a certain age, education and communication becomes very challenging. We must support organizations that provide opportunities for these adults to be successful, contributing members of our society.

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Shira Leeder- Graduate of UC Berkley


Students from The College of the Adaptive Arts, Co- Founder Pamela Lindsay (center).

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II. Where Are All The Disabled Adults? Close your eyes and imagine what a peacock looks like. It’s a beautiful bird with great eyed feathers at their rear, am I correct? This is what the average person would think of a peacock. In reality, the female peacocks do not spread their tails. They look nowhere near as gorgeous as the male peacocks do. When you think about what a peacock looks like, you picture the male peacocks only. The female peacocks are just forgotten about. So where are all the female peacocks? How are female peacocks and adults with disabilities alike? Another invisible group is the adults who have disabilities. After someone with a disability “ages out of the system” their support system is practically pulled from under their feet. So where do they go? Where are all the adults with disabilities? Just like we forget that not all peacocks look the same, society tends to forget about the disabled adults, which is a big issue in terms of the post secondary system and the vitality of an SSI.

Classes at The College of Adaptive Arts

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Any person with an extremely limiting disability is provided with some form of an SSI. An SSI is a Supplemental Security Income. This makes sure the person with a disability is provided with enough coverage so that they would never have to work, yet would still be able to live, supposedly, like every other individual. The SSI covers rent, home repairs, salaries, food, and incidentals (Greenbaum 101). So that’s great, if you have an SSI you don’t have to work and you get free cash! That’s awesome, right? Not exactly. Let’s suppose “Tony” has Down Syndrome. He has been acting for years and has loved every minute of the theatrical experience. “Tony” suddenly gets offered a big movie gig at Warner Brother Studios by a talent agent. “Tony” is offered a significant supporting role in their new feature film. Should he take it? No. Now you’re probably thinking, why shouldn’t hypothetical Tony take the job? It’s his passion, it’s what he loves to do, why shouldn’t he take it? Well, the one thing I didn’t mention about the SSI is its benefits expire once the individual receives a high enough income. Tony should not take the offer, because it isn’t guaranteed that Tony will get another acting gig after that, and what he will make from this one won’t be substantial enough to keep him covered for the rest of his life. He doesn’t want to give up his SSI, because if he does, it would be extremely difficult to get back (“Social Security”). What position does this put Tony in? His only option, really, is to just stay home and keep receiving aid from his SSI. Sounds nice, doesn’t it? Receiving free income and not having to do a thing! Well... Not quite. Tony is now put in a position where he has no choice but to sit at home and watch television and thus, become isolated from the rest of society. He has nothing to do, and nobody to socialize with, since he’s an adult and all the other adults are out making new relationships and friendships in their jobs. He is limited, because he has no outlet to allow him to make new friends and there’s nothing to keep him active. 14


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A job is more than just something people need to provide a paycheck. A job provides something much more significant. A job provides the opportunity to gain friendships, experience the chance to learn new things, and to feel competence and pride (Greenbaum 125). As Judith Greenbaum explains, “Work is an important part of a person’s adult identity, and this is as true for people with developmental disabilities as it is for the rest of us. Working at a job we like greatly increases our life satisfaction” (126). So if having a job increases satisfaction, just how satisfied are these individuals? Studies show that about 90% of adults with great cognitive or intellectual disabilities are unemployed (Rizzolo et al. 2004). Just picture all of these dissatisfied, lonely people... Does that number concern you? Educational aid is provided for children who have disabilities. The law requires that special education and accommodations are available for young students with special needs. However, once someone with a developmental disability graduates from high school, all of the aid and help that has been provided for them their whole life is suddenly pulled from beneath them. Up until age 21 they’re provided with education and assistance, but once they “age out” of the system they’re left with nothing. Now, where do these adults go if they want to further their education? This is an extremely hard question to answer. There are limited schools created for people with disabilities, so what does one do if there isn’t a school that will accept them? The answer, most of the time, would be that the individual would sit at home and do nothing. They can’t get a job because it would endanger their SSI, they have no school to attend, and no college to be a part of. This is where the College of Adaptive Arts comes in.

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II. The College Of Adaptive Arts

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Whether you long to be a writer or be the next astronaut to touch foot on the moon, we all have dreams. Each and every one of us wants to make something out of our lives. This sometimes can be hard for people with disabilities, since they don’t have any post secondary systems that offer special education for people with needs. So if a person with a disability dreams to be a movie maker, what can they do? Luckily for these Bay Area adults, the College of Adaptive Arts welcomes people with all sorts of disabilities and unites them in a welcoming community. The College offers a safe place for these adults with disabilities to pursue their dreams. DeAnna Pursai, CoFounder of the College of Adaptive Arts, advocates how “it was just really heart-wrenching [to see] that there’s not anymore opportunities for [adults with disabilities] to be able to explore these areas where so many of them are very, very gifted and talented.” There is only one College of Adaptive Arts, but they hope to spread the CAA spirit throughout the state, or even the nation. Kim Rains, a student of the College of Adaptive Arts states, “I just want to follow my heart... I just want my dreams to come true.” Kim has down syndrome and has undergone a tracheostomy, yet this doesn’t get in the way of her dreams. Kim is involved in many of the classes offered at CAA. Kim tells us that she participates in “Ceramics, Bowling on Tuesday afternoons, Skyping on Wednesdays... Cheering on Wednesdays, and then Showboaters on Thursdays.” Kim’s personal goal and dream for the future is to create a school for signing. Considering she has had her limitations with speaking due to her tracheostomy, sign language was her first language. She explains how she “wants to reach out to other people and make [her] own ministry for signing and sign language.” Kim hopes to achieve this goal through the College of Adaptive Arts, and hopes to acquire the skill set necessary to follow through with her dream. Now who are the people who will assist Kim and the other students in trying to achieve their goals? The people who have volunteered and slaved away for hours for this purpose are the College of Adaptive Arts “Mountain Movers.”


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22 Co Founder DeAnna Pursai


The College of Adaptive arts is a non-profit organization that helps fulfill and enrich Bay Area adults with special needs’ lives. The people who work with CAA get paid next to nothing for what they do, since they’re a non-profit. They volunteer their time, patience, and energy for these students. The two main “Mountain Movers” are the College of Adaptive Arts Co-Founders. Both DeAnna Pursai and Pamela Lindsay have worked endless hours just working to keep this program running. They rely on generous sponsors and volunteers to keep them in action. When documenting CAA and discovering about them and their goals and missions, we asked why they decided to make The College of Adaptive Arts an art school, rather than any other type of school? What options do the students have and what arts do they teach at The College of Adaptive Arts? Co- Founder Pamela Lindsay replied eagerly explaining the college to us and she illustrated, “What we’re about is a different kind of atmosphere where they come in and bring their strengths which are their amazing abilities. They come in and we determine what their primary strengths are. So, it might be dance, or music, or theater, or filmmaking, and all of these other wonderful things that they enjoy. Language arts and speaking with confidence and going out into the community and self-advocating and speaking. Whatever their area of interest is, then that’s the area we most try to plug them into. ” As Pam explains, the school allows for all sorts of interests. Whether it be onstage acting or learning about how to make healthy lifestyle choices, CAA provides a fun and well rounded educational experience for all students.

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The College of Adaptive Arts has been great for the community of disabled adults, but how did it all come together? In 2009, DeAnna and Pam created the college. As Pam describes, both she and DeAnna had a background in what they were looking for. Pam told us, “Mine is more performance oriented with special ed emphasis and hers is special ed oriented with kind of some theater emphasis and so together we made kind of the two peas in the pod of wholeness so that we could bring as much as we could to the students in the area of social cognitive skill building and all of those other kinds of skills that they really need to work on and build not only personally, but also vocationally, and just, you know, great life skills that they really need to continually work on as adults.� The College of Adaptive Arts has been fulfilling the lives of many disabled citizens for years, and will continue to do so.

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IV. Conclusion So now there’s an answer! Recall- “aging out of the system” and the SSI limitations on adults with disabilities from getting jobs? The only solution was for them to sit at home and wallow in their misery. With The College of Adaptive Arts, this is no longer an issue. It gives the students a place to communicate with one another. It gives them a safe, loving location to make friends, and it gives them an opportunity to further their education. As Kim Rains, a student at the college, explains, “I had a hard time, but I’m not anymore because I’m a grown up... here with these wonderful and great people that I really, really love.” The College of Adaptive Arts provides more than an education. It provides a safe sense of community, partnership, and love for these adults with disabilities who don’t easily fit in. The college finally makes the invisible elephant visible.

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DeAnna Pursai concludes by talking about Pam, herself, and all the teachers and volunteers at CAA. She states:

“We call ourselves the “Mountain Movers,” because for adults with disabilities we are not going to give up on them, and we are doing the impossible by bringing this arts conservatory to life and we’re moving mountains for these adults every day.” 28

All photos on this page are original work by students at The College of Adaptive Arts.


All photos on this page are original work by students at The College of Adaptive Arts.

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Works Cited “Autism Fact Sheet.” National Autism Association RSS. N.p., n.d. Web. 22 Mar. 2013. Barajas, Kathleen. “Inspiring Women with DisAbilities!” Ms. Wheelchair California. N.p., n.d. Web. 22 Mar. 2013. “Down Syndrome.” - National Society. N.p., 2012. Web. 22 Mar. 2013. “Facts About Down Syndrome.” National Association for Down Syndrome. NADS, n.d. Web. 22 Mar. 2013. “Frequently Asked Questions.” Autism Speaks. N.p., n.d. Web. 22 Mar. 2013. Falco, Miriam. “CDC: U.S. Kids with Autism up 78% in past Decade.” CNN. Cable News Network, 01 Jan. 1970. Web. 22 Mar. 2013. Greenbaum, Judith. Life Planning for Adults with Developmental Disabilities: A Guide for Parents & Family Members. Oakland, CA: New Harbinger Publications, 2007. Print. Leeder, Shira. “Shira Leeder.” Shira Leeder. N.p., n.d. Web. 22 Mar. 2013. Lindsay, Pamela. “College of Adaptive Arts Interview.” Personal interview. 18 Mar. 2013. “Newsroom.” Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports. United States Census Bureau, 25 July 2012. Web. 22 Mar. 2013. Pursai, DeAnna. “College of Adaptive Arts Interview.” Personal interview. 5 Mar. 2013. Rains, Kim. “College of Adaptive Arts Interview.” Personal interview. 5 Mar. 2013. Rizzolo, M.C, R. Hemp, C. Moseley, and T. Nelis. “The State of the States in Developmental Disabilities.” Technical, Brief Reports. Overview. N.p., 2004. Web. 22 Mar. 2013. 30

“Social Security.” Publications. N.p., n.d. Web. 22 Mar. 2013.

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