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Kayli Smith Disability Rights. National Council on Independent Living. Background on and Origins of Disability Rights .
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Kayli Smith Disability Rights National Councilon Independent Living
Background on and Origins of DisabilityRights • A significant law was the Americans with DisabilitiesAct (1990), which placed people with disabilities under the same rights a those with legal protection against discrimination becauseof race, colour, sex, national origin, age, or religion. (Fleischer) • Another was Fair Housing Act (1988), which disallows the segregationof persons with disabilitiesfrom the community. (The Fair Housing Act) • The Individuals with Disabilities Education Act (1975) ensures that all children will have access to an education, even those with physical or mental disabilities. (A Guide to DisabilityRights Laws)
Information on Fragile X • FX is the most common inheritedcause of mental disabilities and is the most common known cause of Autism. • FX is caused by only one gene. • 1/4,000 males and 1/7,000 females have FX. (FRAXA) • For more info visit Fragile X: What is it? (Fragile) and Fragile-X SyndromeCauses (CDC)
People with Fragile X ... (FRAXA) • ... may have ADD or ADHD. • ... may have intellectualdisabilities, such as "retardation." • ... may have sensory integration problems, including hypersensitivityto sounds and lights. • ... often appear to have autism. • ... may have a speech delay. • ... may have seizures. • ... may have physical differences such as long face, hyper-extensible joints, flat feet. • ... often have emotional and behavioralproblems.
Fragile X and Autism (Cornish) Autism • Social indifference • Gaze indifference • Self-injury variesin cause and place • Distorted imitate and symbolic play • Manneristic behaviours vary in cause and location • Language impairments • Lack of understanding of facial expressions • Absent theory of mind • Aloof, passive, and active and odd Fragile X • Social anxiety • Gaze aversion • Self-injury usually in the form of hand biting in response to anxiety of excitement • Delayed imitate or symbolic play • Hand flapping in response to anxiety and excitement extremely common • Language impairments • Good understanding of facial expressions • Theory or mind distorted by not absent • Friendly and sociable.
As a membershiporganization, NCIL advances independent living and the rights of people with disabilitiesthrough consumer-driving advocacy. • NCIL envisions a world in which people with disabilities are valued equally and participate fully. • NCIL has a variety of trainings, conferences, internships, and programs to enlightenthe world of the issues that people with disabilitiesface and how to help over come this issues. • NCIL has a vast resource guide to help communicate with the general public ways in which they can help and ways in which to be aware.
Fragile X Dynamics and Norms • The "social rules for what certain types of people should and should not do" that Hall talks about in Among Cultures is somewhat vague within this issue. People with mental disabilities, and specifically with Fragile X, are known for exhibiting odd "norms." • People Fragile X are very sociable (Cornish) and therefore are often unaware of the social norms that they are not following. For example, a young woman living within Mission Vista likes people and wants to touch them (characteristic of a Fragile X) will also tell you that she needs to keep her hands to herself. This is normal -- for those with FX to say what's on theirminds.
Stereotypes Against Those with Fragile X • Hall defines stereotypes as "attributions that cover up individual differences and ascribe certain characteristics to an entiregroup of people" (192). In other words, "we categorize what [people] do on some perceivedsimilarity" (193). • Stupid, ignorant, unintelligent. • Because people with Fragile X often have a delay in mental capacities (Cornish) there is often a stigma placed on these people that they are stupid or unintelligent. • Additionally, they are often ignored because of this stereotype. • Slow, lacking in ability • Because those with Fragile X often have physical differences that accommodateany mental differences, others often perceivethem as unable. • Because of both mental and physical delays and differences, people with Fragile X are often thought of as unable to do things that "normal people" can.
How NCIL is Helping • Trainings and Conferences • NCIL has a number of trainings and conferences throughout the year that address Disability Rights and provides ways for the public to get involved and help. • Membership Program • NCIL has a membership program that is designed to keep members up-to-date with the most relevant information in exchanged for the funds to research and promote educational events. • Jobs • NCIL has a varietyof jobs available through which people can get involvedand make a difference.
With this project, the students were required to find a topic that mattered to them and research it. This allowed them to take initiative in their learning and choose somethingthat was relative to them. Students were required to find support for theirprojects from a variety of sources which encouraged them to engage in learning from many standpoints. This project allows students to engage in a topic that matters to them but then to learn from others and learn about different cultures from theirpeers. Learn Actively - Learning is a personal, interactive process that results in greater expertise and a more comprehensive understanding of the world.
This project required students to connect the class texts with something from their personal world that they connect with. This project requires that the students analyze information from a variety of sources and piece it all together to form one cohesive presentation. Think Critically, Creatively and Reflectively- Reason and imagination are fundamental to problem solving and critical examination of ideas.
This project required the students to engage in concise, effective communication through visual, audio, and written forms. This project allowed students to work together or to work individually. This allows the students to analyze theirown learning and use theirself-assessment to decide which method works best and then to stick to that choice. This project requires that the students use information form a variety of scholarly places. This can include the internet, but is not limited to the internet. It does, however, use the internet for the students to communicate with each other. This project is presented in the form of a power point which requires that the students use a computer and can communicate effectivelyand concisely. Communicate with Clarity and Originality - The ability to exchange ideas and information is essential to personal growth, productive work, and societal vitality.
This project requires that the students communicate with one another based on the projects that they've chosen. This implies that students must communicate with kindness, even if they disagree, in order to maintain a peaceableenvironment. This project encourages students to learn about variety of topics and movements within the US and how to interact with them in a peaceful manner. Interact in Diverse and Complex Environments - Successful negotiation through our increasingly complex, interdependent and global society requires knowledge and awareness of self and others, as well as enhanced interaction skills.
References CDC. (2011, July 15). CDC - Fragile X Syndrome (FXS), Fragile X Syndrome Causes Video - NCBDDD. Centers for Disease Control andPrevention. Retrieved December 11, 2011, from http://www.cdc.gov/ncbddd/fxs/video/FragileX-4/hmtl Cornish, K., Turk, J., & Levitas, A. (2006, September 12). Fragile X Syndrome and Autism: Common Developmental Pathways?. Current Pediatric Reviews, Vol 3, No 1, 61-68. The Fair Housing Act. (n.d.) The United States Department of Justice. Retrieved December 11, 2011, from www.justice.gov/crt/about/hce/title8.ph Fleischer, D. Z., & Zames, F. (1998). Disability rights. Social Policy, 28(3), 52-55. Fragile X Syndrome: What is it?. (n.d). Your Genes, Your Health. Retrieved December 11, 2011, from http://www.ygyh.org/fragx/whatisit/htm FRAXA Research Foundation -- finding a cure for Fragile X and Autism -- About Fragile X. (n.d.). FRAXA Research Foundation -- finding a cure for Fragile X and Autism. Retrieved December 11, 2011, from http://www.fraxa.org/fragilex.aspx
References A Guide to DisabilityRights Laws. (n.d.). ADA Home Page - ada.gov - Information and Technical Assistance on the Americans with Disabilities Act. Retrieved December 11, 201, from http://www.ada.gov/cguide.htm#ancho Hall, B.J. (2005). Relationship Between Communication and Culture. Among Cultures: The Challenge of Communication (2nd ed., pg 52-53). Belmont, CA: Thomson Wadsworth. Hall, B.J. (2005). Why do So Many People Get Treated Poorly?. Among Cultures: TheChallenge of Communication (2nd ed., pg 52-53). Belmont, CA: Thomson Wadsworth. Hall, B.J. (2005). How Can We Manage Conflict in Intercultural Settings?. Among Cultures: TheChallenge of Communication (2nd ed., pg 52-53). Belmont, CA: Thomson Wadsworth. Mission Vista. Our Supports. (n.d.). Home. Retrieved December 11, 2011, from http://missionvista.community.officeliv