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g Children with Special Needs Site

BellaOnline's Children with Special Needs Editor

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Disability Advocacy and Awareness


Disability awareness and advocacy are not issues that most parents of newly diagnosed babies and children encounter before they hear a diagnosis.

We can feel at loose ends because most of us don't know what it is like to grow up with a disability, a chronic health condition or even short term serious medical needs. We question whether our child will have the same opportunities, interests, and experiences that we enjoyed, or worry they will have more of those that we did not enjoy.

Some parents have not had to consider human rights or civil rights issues from the perspective individuals with disabilities experience. There is no disability history taught in schools, and so few parents have grown up in classrooms where children with disabilities were included and well known that we rarely have the background to develop an informed perspective of our own.

I was surprised that my son has approved and appreciated me speaking up in an angry voice when a stranger using the R-word unexpectedly did not respond appropriately to my objection. This has happened rarely, mainly because I'm a fairly mild-mannered and kind person who has practiced impulse control during stressful situations that parents of kids with disabilities experience too often.

And I carry cards from Dave Hingsburger explaining that we consider certain words hate language so ignorant strangers can take their time digesting the information. I wondered how many times he had considered me a bystander in situations that were hurtful to him growing up. Now I wish I had always said, "I don't agree with that" or simply "That's wrong."

Studying the history of advocacy, participating in awareness and advocacy events, and promoting understanding of our children's particular diagnosis helps us understand a small part of the obstacles our children face. Being involved in their lives every day, we learn how unique and wonderful each child is - even among children with the same diagnosis - and understand that the disability is a small part of who they are and who they will become.

Browse at local bookstores, your public library, or online retailers for books about disability advocacy and awareness, like: No Pity - People with Disabilities Forging a New Civil Rights Movement; or Why I Burned My Book and Other Essays on Disability..

I am not a 'person with a disability' - I am a disabled person - Lisa Egan
http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person

Dealing with Rude Comments or Behavior in Public
http://www.bellaonline.com/articles/art69014.asp

Disability is Not A Cute Little Joke
http://www.abc.net.au/rampup/articles/2012/02/08/3425691.htm

Childhood Disability and Supporting Other Mothers
http://www.bellaonline.com/articles/art59660.asp

Disability Solutions
An Effective Complement: Advocacy & Forgiveness
http://www.disabilitysolutions.org/blog.htm
The Least Dangerous Assumption

Question and Answer Exchange with Greg Palmer author of _Adventures in the Mainstream, Coming of Age with Down Syndrome_

Reflections on Friendship
www.communityworks.info

Cultural barriers to finding services for children with special needs - Although this website is dedicated to families of Asian and Pacific Islander heritage, similar barriers may exist in families of any background; (not listed is stereotyping, prejudice or lack of cultural competency in service providers)

Parents for Inclusion - Challenging experiences faced by minority ethnic families with disabled children
http://www.parentsforinclusion.org

Self-Advocate From Massachusetts Testifies Before Senate Committee
http://www.ndss.org

Down Syndrome Awareness
http://www.bellaonline.com/articles/art34845.asp


Teens with Disabilities - Transition to Adulthood

http://www.bellaonline.com/articles/art33519.asp

Children with Spina Bifida
http://www.bellaonline.com/articles/art32709.asp

Brothers and Sisters of Children with Special Needs
http://www.bellaonline.com/articles/art33375.asp

Prenatal Diagnosis Being a Supportive Friend or Relative
http://www.bellaonline.com/articles/art32686.asp

Why I put my Down's syndrome baby up for adoption... and the loving mother who took him in
http://www.dailymail.co.uk

People First Language - disabilityisnatural.com
The Disability Hierarchy - DisabilityIsNatural.com Newsletter

Interview with Justin's Parents - Deafness - Children's Access to Interpreters
http://www.bellaonline.com/articles/art36932.asp

The Psychology of Interdependence - Gentle Teaching - Netherlands
http://www.gentleteaching.nl

Frustrations of Hearing Aids - Deafness site at BellaOnline.com

Community College Degree Program for Students with Developmental Disabilities - Venture News Story - KIRO TV Seattle

A still-grieving sister explains how her brother with Down syndrome was betrayed by the medical community - Daily Mail
http://tinyurl.com/4hfdyz

For those in Australia and UK:
"The Music in Me " is an international award-winning documentary about the Sydney dance troupe the Merry Makers, all of whom have intellectual or multiple disabilities. Lots of people with Down syndrome belong to Merry Makers. It will be screened across Australia a special on Andrew Denton's " Enough Rope" on Monday 9th June 2008, 9.35 pm, on ABC1.

Family Village - Community of Disability Related Resources
Community of Disability Related Resources

Inclusive Schools - Portraits of Excellence - Report on Choctawhatchee High School in Florida Panhandle, Edward R Murrow High School in Brooklyn, NY, and Centreville High School in Fairfax County VA

Wall Street Journal Online - Some Companies Offer Assistance To Parents of Kids with Disabilities Support Groups, Insurance, Resources

General Information on Disabilities Family Village Library

Disability Awareness Educational Resources

NDSS: Everyone Counts: Teaching Acceptance & Inclusion - K-6

Center for Independence Resources at centerforindependence.org

Gentle Teaching - Teaching children and adults with developmental disabilities to feel safe, loved, loving, and engaged

Sensory Integration as a Daily Strategy of Care Giving
Us and Them - by Mayer Shevin
http://shevin.org/articles-usthem.html

Diversity World
http://www.diversityworld.com

Preparing for Emergencies - Children with Special Needs
http://www.bellaonline.com/articles/art50320.asp/zzz

Preparing for Emergencies - Children with Special Needs
http://www.bellaonline.com/articles/art50320.asp

NFPA Emergency Evacuation Planning Guide for People with Disabilities
http://www.nfpa.org/evacuationguide
The National Fire Protection Association (NFPA) developed this free guide as a resource for creating an all-inclusive evacuation plan that considers everyone’s needs for evacuation, including the needs of people with disabilities.
Please share this with local mayors, fire and police chiefs, and school district directors.

Center on Human Policy, Syracuse University
- Links to Disability Resources
FAQ about the Community Imperative
Community Imperative Statement

Alliance For Full Participation

National Council on Disability

Wrights Law

TASH

Mercy, Bioethics, and Children with Disabilities

Perception of Disability
http://www.bioethicsanddisability.org

Testimony regarding the Olmstead Act Institutions, Nursing Homes, and Community Supported Living - Indiana

Supreme Court Disability Rights Rally:
Advocates for individuals with disabilities met on the steps of the Supreme Court the morning of October 5th, 2005
See the web sites below to learn about current or pending Supreme Court cases of interest to families of people with disabilities:
Schaffer v. Weast Case: special education due process hearings:
http://www.ncd.gov/newsroom/publications/2005/pdf/burdenofproof.pdf
http://www.harborhouselaw.com/law/plead/schaffer.amicus.orgs2.pdf
Gonzales v Oregon Case: assisted suicide and people with disabilities
http://www.notdeadyet.org/docs/gonzalesvorsupct.html
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Content copyright © 2013 by Pamela Wilson. All rights reserved.
This content was written by Pamela Wilson. If you wish to use this content in any manner, you need written permission. Contact Pamela Wilson for details.

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