The Path To Integration
Written. Designed. Photographed By Nkki Kashani
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Dedication
I dedicate this book to all the students, workers and volunteers who put in countless hours of work to help our society integrate. Without the hard work and dedication of these individuals social progression would not be possible.
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Acknowledgements
Without the hard work and dedication of all the staff at Abilities United, this book would not be possible. I’d like to thank Misty Accristo for her willigness and support of this project. I also appreciate the great interviews and contributions given by Jennifer Myers, Pauline Navarro, Jamie La, Elyssa Olson, and Kimberely Farrar. I want to say thank you to all the students at Abilities United for giving me this life changing experience. Lastly, the success of this project would not be possible without the determination and support of my partner Hannah Hansen.
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Table of Contents
Forword
8&9
Chapter 1: Clarity 10 & 11 Chapter 2: Ryan’s World 12 & 13 Chapter 3: Short Term Thinking, Long Term Effects
14 & 15
Pictures
16 & 17
Chapter 4: Misplaced Empathy 8 & 19 Chapter 5: Indifference and Isolation
20 & 21
Chapter 6: The Building Blocks Toward Integration
22 - 25
Chapter 7: An Integrated Future
26 & 27
Chaapter 8: Works Cited 28 & 29 The End 30
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Forword
next. As days progressed and weeks turned into months, the new friends I had made at Abilities United were always on the back of my mind. I found It has been almost a year since I first walked myself constantly wanting to come back to the prothrough the doors of the After School Socializagram even after my project had finished, not to voluntion Program at Abilities United. What started out teer, but to hang out with my peers. as a small English project blossomed into a passion A lot of my regular peers applaud my efforts when I for a subject, which still holds a prominent place tell them I volunteer at the After School Socialization in my heart. Setting foot into the agency, I was imProgram at Abilities United, praising me for helping mediately put out of my comfort zone. The faces of kids with Developmental Disabilities. However, what individuals that are often kept from my every daily they don’t realize is, those kids are opening up my life, surrounded me and I realized how sheltered I world, just as I may be impacting theirs. Together we had actually been from the diversity world of develshare a mutual bond in which we both get to experiopmental disabilities. After overcoming the brief ence the diversity of our world and partake in the joy feeling of shock and ridding myself of the stigma of integration. burdening these individuals I realized I needed not Our societal norms have been long instilled to to be afraid, all that was really needed was an open isolate individuals with developmental disabilities. mind and an open heart. We subconsciously degrade the value of individuals I thought I wouldn’t be able to relate to kids who are developmentally delayed, preventing them who were born with different abilities than myself. from social integration. With a new generation comes I thought I wouldn’t be able to maintain substantial a new wave of thinking, thus we must work to include relationships with kids bearing a developmental disthis prominent group of society into our communiability. I thought I was there to merely look after the ties, providing them with the necessary skills to enjoy kids. . I couldn’t have been farther from reality. My their lives to its fullest potential. We must bring to superior attitude immediately shifted as I realized light the issues of our government funding and social how dignified and distinct every adolescent in the indifference and take a stand against the stigma on program was, each kid completely different from the 8 individuals who are intellectually disabled.
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Chapter 1: Clarity
What does the general population think of when they hear the word, developmental disability? Well, the world developmental disability in itself is a relatively modern term, replacing the slurs used preceding the modern age. However, terms like retard, mental illness, and stupid are among the thousands of labels still casually thrust around today used to describe the citizens of our society who possess growth defects. These derogatory terms stigmatize individuals who must bear the encumbrances of possessing a developmental impairment. By definition a retard is a person who is stupid, obtuse, or ineffective in someway or a slowing down, diminution, or hindrance, as in a machine. An illness, according to the distinguished Merriam-Webster Dictionary, refers to a disease or bad health. And finally, stupid, a term used to describe one that is unintelligent or irresponsible. None of these terms accurately depict the conditions of these individuals. They are neither a piece of machinery nor ineffective. They do not possess a disease and are not unintelligent by their own standards. These terms do no justice to the condition and lifestyles that these respectable individuals lead. In fact, it is the use of these words that strip these humans of their dignity and thrusts them into a social isolation in which they must fight diligently to overcome. 10
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“My son has contributed greatly to the happiness of my world and many peoples’ world bringing out the best in all of us..” - Pauline Navarro
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Chapter 2: Ryan’s World “Words cannot describe the feeling [of knowing you are going to have a son with a developmental disability], but the process was probably like walking through mud that is setting into cement”. Many don’t realize the ranges of severities of developmental disabilities and the opportunities provided with those who must bear those shortcomings. Developmental Disabilities is a term used to describe lifelong disabilities attributable to mental or physical impairments, manifested prior to age 18 vary from cognitive functionality to motor and physical impediments, communication skills, social or emotional qualities, and adaptive abilities. ”...But you just got to put one foot in front of the other and keep moving”, Pauline Navarro mother of, seventeen year-old Ryan born with Down Syndrome, explains. As a mother of a son whose son is developmentally delayed, Pauline experiences the shortcomings of our society around the issues concerning individuals who possess developmental disabilities. She is able to see the world shift as Ryan becomes a more distinct individual, as he continues to grow older. A world in which the education on the subject matter of developmental disabilities is not mandatory, thus scarcely a part of the curriculum in schools. A world in which derogatory terms are used with such nonchalance, and the ignorance of its effect is so widespread. A world in which the number of social integration programs funded by the government for kids like Ryan is limited. What kind of a world is it though, to continue to neglect this prominent group of our society and to promote isolation instead of integration? 13
Chapter 3: Short Term Thinking, Long Term Effects
While the state and federal education departments do spend about $36 billion each year on special education programs for individuals with developmental disabilities for adolescents ranging from ages 3-21, programs that are detrimental to the development of living skills for these individuals are continuously being targeted and funding is drastically plummeting (abilitiesunited. org). While we have been experiencing an economic recession for the past few years, our state and federal governments have remained undetermined to restore and promote programs that work to integrate individuals with developmental disabilities into working members of our society. The neglect to invest in these programs actually decreases our society’s future economic success. Manager of the child-care section of Abilities United, Kimberley Farrar, thoroughly explains how the decision to not aid these individuals into becoming contributing members of our workforce actually negatively affects our economy on a nationwide level. By being unable to financially and socially support themselves, these individuals must be financially placed in the care of the state. If social integration programs are not available to provide those with developmental disabilities with the possibilities of immersion into society, a higher level of care will be needed later, and the government’s economic strain will become more prominent later on. Options for unable bodied individuals are to either be placed in a group home, which can range from a government monthly subsidy of upwards of a thousands of dollars a month, or to forever live in the care of their parents 14
with minimal allowances granted to each family by the state. These allowances do not cover the costs of integration programs rather they provide only minimal compensation that allows for the care of a low-wage baby sitter. Essentially the government is saving money in a short-term aspect and placing the financial burden on systems in charge later on down the line. From a strictly economic standpoint, the decision to cut programs actually works against the economic interests of both the state and federal governments. A small investment in the progression of skill development for these individuals provides great future economic benefit and social integration in the long run. 15
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Chapter 4: Misplaced Empathy
The government has also turned a blind eye to the indifference engrained in our youth. Indifference, by definition means the absence of feeling or the alienation of a subject matter. Experiencing this firsthand, it is often taught in many communities that proper etiquette is to turn our heads the other way when we see an individual who is developmentally delayed in our society. By doing so we are subconsciously pushing these dignified individuals into further social isolation and justifying our apathetic behaviors. This sense of misplaced empathy has manifested itself in a heinous murder, which recently took place in Sunnyvale, CA in which a mother killed her autistic son. She then proceeded to take her own life as a way to spare the both of them the grief if living such a difficult life. Because of the lack of programs provided to assist the mother with social and economic aid, the life of an innocent child was taken away and his right to a dignified life was stripped from him as many began to justify the deplorable acts of his mother. Many social outlets interviewed fellow neighbors about the inhumane crime and in fact many began to empathize with the motives of the mother of the autistic child claiming things such as, “Parents of kids with autism are under a terrific amount of stress” and “It can be a pretty daunting challenge” (Kane, San Francisco Chronicle). However, Autism Awareness Activist Jenny Meyers explains, that when the general population begins to justify the heinous action of murder, they are essentially adding her developmentally delayed son to a list of burdens that complicated her life, thus greatly downgrading the value of18her son’s life. We, as a society, simply cannot afford to condone the devaluation of the life of innocent humans and reduce innocent individuals to just a simple list of burdens.
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20 year old Tyler, works on a puzzle assigned to him by his daily pictionary schedule
Chapter 5: Indifference and Isolation
The federal as well as state governments must take a firm stance on educating adolescents on the topic of developmental disabilities and strategize a plan to integrate these individuals more profoundly into our society. We must insist that the concern and education of developmental disabilities be more thoroughly addressed and instill a mandatory school curriculum regarding this topic in our country’s schooling system. By educating the young adults of our society, we will slowly be able to transform the prominent division of our modern age, and progress towards a united culture. By educating our youth on the realities of the differences between a developmentally delayed and a typically developed individual, adolescents will rid themselves of their indifferent behavior and understand the proper etiquette of social integration. It is become a social norm that to remain indifferent is polite, however we must break this cultural gap and bridge our differences to create a universal system of growth. It is our job to welcome those with developmental disabilities into the workforce and the general public. Although the government has made a point in instilling mandatory special ed programs in our curriculum, the societal outlook on developmental disabilities is still highly tainted by a negative connotation. We must rid our minds of the current status quo and provide individuals with developmental disabilities the skills to provide for themselves. Programs such as The After School Socialization Program: Abilities United, located in Palo 21 Alto, work to achieve just that.
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Chapter 6: The Building Blocks Towards Integration
Founded in 1963 by twelve families who all possessed children that were intellectually disabled, Abilities United serves as a non profit organization, that offers individuals a chance to develop necessary skills in order to evolve into successful individuals in society (abilitiesunited. org). The program offers its participants “the skills they need to chose the lives they lead�. With programs that aid educational, therapeutic, recreational and vocational experiences they allow for these individuals to evolve from a sheltered environment and instead place them into a community of inclusion where each individual has their own unique ability working to strengthen a community as a whole. The After School Socialization Program is a youth integration program that specializes in community-integration services for adolescents who have a developmental disability. The program aids individuals who range from ages 5 through 22 years old, providing these individuals with the opportunity to acquire daily living skills, through a picture-exchange communication system, which is individualized to accommodate each distinct disorder the students possess. In the After School Socialization Program, the children do a combination of independent work, small group activities, and large group activities to work on different social skills, behaviors, expressive and receptive language, gross motor, fine motor, and cognitive skills as well as spatial awareness and sensory integration. Within these different activities the teachers help the program’s participants work on problem solving, improving impulse control and self-regulation, initiating and sustaining social interactions, learning how to express emotions and feelings appropriately, increase sharing, turn taking, and waiting skills as well as learning to develop empathy23
and awareness of body language. Not only do the kids get the opportunity to practice these skills onsite, but go out into the community as well (parks, out to buy snack, museums, libraries, etc.) to work on these skills in different environments and with members of the community. The ultimate goal of the program is for a child to gain enough skills that they need to graduate out into a community-based program with typical peers. All the children in program have IPP goals, which often coincide with their IEP goals to maximize consistency when it comes to skill building. The daily routines provided to each student are a prominent factor in the kids’ success in many aspects of their lives such as becoming independent individuals, socializing with peers, performing well in school, and sometimes even entering the workforce. The program successfully instills the dignity and pride often stripped from these individuals in society. However, with the government financial support continuing to dwindle the future of the After School Socialization Program remains wary. Manager, Misty Accristo explains how the After School Socialization program is often overlooked because of the age demographics lack of appeal in society. The agency’s infant program remains successful because of the hope that is still present early on, and its adult program excels because of its appeal to the masses. While the teenage integration program works hard and strategically to instill the pride and hope into each of its students, it continues to be overlooked because to many, the hope is lost among teenagers battling intellectual disabilities. Its efforts however, prove to be effective and successful. “I used to wake up at three in the morning thinking if Ryan would ever make it into a group home. Now I have no doubt in my mind he can do it, thanks to this program”, Mother of seventeen-year old Ryan emphatically explains. The program has successfully managed to provide familial care and support for those with developmentally delayed children as well as promote individualism among its youth. The difference many fail to see is that this program is not simply providing parents with a place for their kids to be babysat. These kids come to learn how to develop skills to provide them with opportunities in developing into more holistic individuals. There is a systematic operation the program uses to target each disability and 24 work to improve each individual’s shortcomings.
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Chapter 7: An Integrated Future Regardless of social integration programs, it still up to the masses of society to welcome these individuals into our community, which proves to be difficult when a lot the youth of America remains uneducated on the issues of developmental disabilities. The lack of mandatory education instilled in the public schooling systems, prevents the youth of American from allowing these developmentally delayed individuals into our community. As future leaders of America, it is essential that we educate ourselves on the habits, conditions and lifestyle of those with developmental disabilities in efforts to immerse ourselves into their lives. We must spread the knowledge and rid ourselves of the stereotypes thrust onto the undeserving individuals born with a condition which they bear no control over. By educating ourselves we, as a whole, will be able to restore and maintain the dignity in every deserving individual. We can begin to rid our societies of the outdated terms, used by the ignorant preceding our time. We can decipher between the wrongs and rights and learn ways to integrate these individuals into our society. By opening our minds, future business leaders of America can strategize ways to incorporate these individuals into the working force, thus providing the gratification of equality within our society. For these reasons, the federal government must ensure the education of developmental disabilities be a mandatory requirement among the youth of America through public and private education. While the government has continued to support programs to aid the individuals of our 26 society who possess developmental disabilities, it’s dwindling financial support, lack of man-
datory education allow the societal views of those bearing intellectual disabilities to continue to be negative. By not making the education of developmental disabilities a mandatory part of public school curriculum, the masses of our generation will continue to be ignorant towards this issue. The use of degrading slurs will not decrease, and any hope for full integration will not be successful. The government also needs to continue to fund integrative social programs in hopes to increase the success rate of individuals bearing developmental disabilities in our society.
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“Every life is valuable and the dignity of human life cannot be interrupted�
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Work’s Cited
1.Jacobs, . “Developmental Disabilities Issues.” Department of Family and Community Medicine, Web. 25 Mar 2012. 2. Kane, William. “ Sunnyvale Mom Kills Autistic.” San Francisco Chronicle. n. page. Web. 30 Mar. 2012. <http://www.sfgate.com/cgibin/article. cgi?f=/c/a/2012/03/07/BAVR1NH8B4.DTL>. 3. “A Brief History of Developmental Disabilities in the United States.” Department of Family and Community Medicine. Web. 24 Mar 2012. <http:// developmentalmedicine.ucsf.edu/odpc/docs/pdf/practice_pearls/brief_ history.pdf>. 4.”Our Mission.” Abilities United . Web. 24 Mar 2012. <http://www.abilitiesunited.org/>. 5. Unknown, . “Parallels In Time.” A History Of Development Disabilities. Web. 26 Mar. 2012. <http://www.mnddc.org/parallels/index.html>. 29
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