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This project explores the life stories of thirteen leaders in the self-advocacy movement and their perspectives on key issues and leadership challenges. Part of the broader disability rights movement, the self-advocacy movement is unique in that it has been led and informed by the individual and collective experiences of people with intellectual and developmental disabilities. Despite its widespread existence nationwide and internationally, few works have explored the rich history, culture, and significance of the self-advocacy movement. To help fill this void, Joe Caldwell, Ph.D., Department of Disability and Human Development, University of Illinois at Chicago, undertook this life history project and donated transcripts to The Bancroft Library for its Disability Rights and Independent Living Movement collection. More about Self-Advocacy Movement oral history project.

Although there are a variety of school-based services available for children with learning, emotional, and social disabilities, one critical need often goes unfulfilled: providing guidance and strategies that instill self-advocacy.       Most students have only a superficial notion of the reasons they receive these special accommodations, and many children are completely uninformed. Resource teachers and specialists do not generally have the authority to label and enlighten students about their disabilities, the foundation for building self-advocacy. If children are to learn how to become better consumers of educational resources, especially as they grow older, someone must take the lead.      Parents of children with disabilities can fill this role by doing the following: Introduce children’s diagnoses to them in elementary school so that they can make sense out of their struggles Use a matter-of-fact tone of voice when explaining to children that they learn/behave/relate differently from other students and, therefore, need extra help to ensure that they can succeed just like their classmates Don’t leave out the disability label—such as writing disability, ADHD, or Aspergers Syndrome—since labels are a reality of their educational life Emphasize that the teachers and special staff at school who help them will be aware of this label and prepared to help in certain ways to make school a fairer place for them to learn and grow      It’s important to review with children the ways in which their school must provide special help and services. Emphasize that these accommodations are rules the school must follow. “You have the responsibility to do your best job, and teachers must follow the learning/behavior/friendship helping rules that make things fair for you,” is one way to put it. Explain how extra time on assessments, decreased homework, or social skills groups are examples of the helping rules that schools must follow. Discuss how there is a written promise called the individualized education plan (IEP), which includes all the helping rules and makes all of this clear.      Find child-friendly resources—such as books, websites, and videos—that explain in detail their specific disability and the ways other children have learned to cope and achieve despite these limitations. Use these materials as a springboard for deeper discussion about past times when their disability created significant stress or barriers to success. Reassure them that this was before their problem was known and that there is so much that can be done to build a plan for success now that it has been identified.      Point out that one of their most important responsibilities is to be able to discuss their disability with teachers and ask for extra help and accommodation when struggles are too great. Make sure that these discussions take place before middle school, when developmental factors make it harder to get such discussions started. Ensure that they know what practical steps are in their IEP at each grade so that they can respectfully remind teaching staff if necessary.      Having a disability is like having to wear glasses; students with glasses have accepted this fact as necessary to seeing clearly.

Thank you to the McCray, Fahey, Olko, Chavvaro and Gallagher families for sharing your experiences and participating in our new video about students with disabilities and self-advocacy!

About the Autistic Self-Advocacy Network Mission Statement: The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.

On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled. Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day. Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy. It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

The ability to self-advocate is important for kids to learn in order to be successful at all stages of their lives. In the past, self-advocacy was a term applied mostly to adults with disabilities, but recently more focus has been placed on teaching this skill to preteens and teenagers.

Click here to register!What:The Autistic Self Advocacy Network, in conjunction with the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, the Harvard Law Project on Disability and the UNESCO Bioethics Chair American Unit, is proud to invite you, to join us on December 10th for a Symposium on Ethical, Legal and Social Implications of Autism Research at Harvard Law School. The free event will run from 9 AM to 3 PM at the Harvard Law School campus, Hauser Hall, Room 105. Topics covered will include prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals and much more. This symposium will serve a unique role in shedding light on ethics and values issues within the autism research community. By bringing together self-advocate and researcher participants, we hope this will serve as a starting point for meaningful dialogue between those conducting research on autism and the community of Autistic adults and youth. Confirmed participants include Administration on Developmental Disabilities Commissioner Sharon Lewis, ASAN President and IACC Public Member Ari Ne'eman, National Institute on Child Health and Human Developmental Director Alan Guttmacher, Harvard Law Professor Michael Stein, Paula Durbin-Westby, Emily Titon, Liz Pellicano, David Rose and many more.   This event is open to the general public without charge and is made possible by a grant from the Administration on Developmental Disabilities.When:Saturday December 10, 2011 9:00 AM to 3:00 PM ESTWhere: Harvard Law School, Hauser Hall Room 1051563 Massachusetts AvenueCambridge, MA 02138 Contact: Ari Ne'eman Autistic Self Advocacy Network 202.596.1056 info@autisticadvocacy.org

At my son’s last IEP, he was invited to participate by presenting a slideshow titled “All About Me.” In the slideshow, he had prepared answers to his teacher’s questions about his needs. My son added photographs from our family albums to illustrate his answers.

MOSSAIC: Mentorship, Organization, and Social Support for Autism Inclusion on Campus MOSSAIC is support for people transitioning to the U of M who have autism spectrum disorder, Asperger syndrome, or other social/organizational challenges.  This program is offered by the RiteCare Speech, Language and Hearing Clinic.   MOSSAIC provides: Weekly time with experienced peers (U of M juniors or seniors) to address your individualized needs such as: Walk through your class schedule Organization of materials & time Self-advocacy & when to disclose Campus safety Shared living space Understanding academic expectations Problem solving opportunities Evening seminars to support student needs & provide social opportunities.  If interested, please contact:  Jennifer Closson at 406-243-5261 or jennifer.closson@mso.umt.edu  Bethany Rigles at 406-243-2208 or bethany.rigles@mso.umt.edu

The Montana Youth Leadership Forum is a unique leadership training program for high school students with disabilities.  Each year the program begins with the Forum that takes place for a week in July where students are brought to the campus of Carroll College for training.  During the Forum students have the opportunity to learn about the history and culture of disability, self advocacy skills, and how the enhance their self esteem.

Click here to apply for MYLF!What:MYLF (pronounced “my life”) is a unique career and leadership training program for high school sophomores, juniors, and seniors with disabilities. By serving as delegates from their communities, youth with disabilities will cultivate leadership, citizenship, and social skills.Delegates gain access to vital resources related to assistive technology, community support, and self-advocacy. Successful men and women with disabilities serve as role models in helping youth realize their abilities and obligations to pursue meaningful employment and contribute to society. This educational and motivational forum involves an intense schedule. Throughout the training, small "working groups" explore personal leadership and career plans.When:July 16-20, 2012Where:Helena, MontanaContact:June Hermanson Phone: (406)442-2576 mylfjuneh@bresnan.net

The Autistic Self Advocacy Network is proud to announce the release of a new technical assistance document describing the use of color communication badges. Color Communication Badges are an accommodation to support social interaction for people with a variety of disabilities and communication needs. Color communication badges were first developed by Autism Network International, and popularized by the Autistic community in Autistic spaces and conferences.

Click here to register for this webinar Why Neurodiversity and Inclusion? A vital discussion about youth and adults living with autism, autism spectrum disorders (ASD), or related disabilities--particularly for direct support professionals, service providers, special educators, parents, advocates and self-advocates. What: Ari Ne'eman is the Founding President of the Autistic Self-Advocacy Network (ASAN), a national advocacy organization run by and for Autistic adults and youth. Ne'eman was recently appointed by President Obama as the first Autistic person to serve on the National Council on Disability. This webinar will focus on the topic of "Neurodiversity and Inclusion", discussing the growing "neurological diversity" movement, its perspectives and relationship with the broader disability rights movement and its implications on inclusive educational practice. Topics covered will include: the impact of passing demands the appropriate and inappropriate identification of "problem behaviors" other aspects of neurodiversity's implications for inclusive education." When: January 7, 2011 11am-1pm MT

Click here to Register Online What: This year, the New Community Opportunities Project at ILRU is offering three webinars on the role of the CIL in facilitating and advancing successful youth transition. In the first event, "Youth Taking Charge of Their Own Transition: The Role of CILs," our presenter will provide participants with strategies on how CILs can use existing services they provide for all populations to support youth in transition.  Upon completion of this webinar, participants will have knowledge and resources which will enable them to: Describe tools and strategies for self-assessment of student's needs, interests, and preferences. Assist the student with developing an Independent Living Plan that enables the youth to describe and take charge of their transition process. Through peer mentoring, support students to gain the independent living and advocacy skills necessary for them to achieve their goals. Identify other resources available to youth and young adults that can support them in achieving their goals.  When: April 20, 2011 1:00-2:30pm Mountain Target Audience: Executive directors and staff of centers for independent living involved in the youth transition process. Registration Fee: $75.00 per site. Fee does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate in this webinar. ALL CILs are encouraged to participate in this important training.

Click here to Register Online What: This year, the New Community Opportunities Project at ILRU is offering three webinars on the role of the CIL in facilitating and advancing successful youth transition. In the first event, "Youth Taking Charge of Their Own Transition: The Role of CILs," our presenter will provide participants with strategies on how CILs can use existing services they provide for all populations to support youth in transition.  Upon completion of this webinar, participants will have knowledge and resources which will enable them to: Describe tools and strategies for self-assessment of student's needs, interests, and preferences. Assist the student with developing an Independent Living Plan that enables the youth to describe and take charge of their transition process. Through peer mentoring, support students to gain the independent living and advocacy skills necessary for them to achieve their goals. Identify other resources available to youth and young adults that can support them in achieving their goals.  Target Audience: Executive directors and staff of centers for independent living involved in the youth transition process. Registration Fee: $75.00 per site. Fee does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate in this webinar. ALL CILs are encouraged to participate in this important training.

April is known as Autism Awareness Month, but this year there's a movement to re-brand it Autism Acceptance Month. The Autistic Self Advocacy Network (ASAN), an advocacy group for and by people with autism, is calling for April to be a "celebration of Autistic culture and community." For me, this resonates a lot more than Autism Awareness Month. I'm already very much aware of autism. Two of my four kids have Asperger's syndrome, and I've been living and breathing autism awareness for quite some time now. So have my husband, our two kids with ASDs, their siblings, our entire extended family, and our friends.