Neurotransmitters Flow in this Autism Mind: Disability Rights

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UNCRPD

UNCRPD.

As an undergrad I had the opportunity to work on 42 case studies of the implementation of the UNCRPD by signatory countries. I learned so much about disability challenges, especially in under-resourced nations. Thank you Professor Pineda for that internship opportunity.

Disability Rights and both human rights and civil rights. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) represents a monumental step towards ensuring equal rights and inclusion for people with disabilities worldwide.

What is the UNCRPD… Read on

The Birth of UNCRPD

UNCRPD’s journey began in the early 2000s, rooted in a growing recognition that existing international human rights instruments were insufficient in protecting the rights of persons with disabilities (PWD). The Convention was adopted by the UN General Assembly on December 13, 2006, and it opened for signature on March 30, 2007 where it received an overwhelming response; with 82 countries signing the Convention on opening day, making it the highest number of signatories in history to a UN Convention on its opening day. As of today, there are 182 parties to the Convention, including the European Union, which signed as a regional integration organization.

The drafting process of the UNCRPD was marked by unprecedented collaboration between governments and civil society, particularly organizations of PWDs. The "Nothing about us without us" motto became a central theme, ensuring that the voices of PWDs were at the forefront of the discussions.

The first Conference of States Parties (COSP) to the UNCRPD was held in 2008 at the UN Headquarters in New York. This conference is an annual event where signatories gather to discuss progress, challenges, and strategies related to the implementation of the Convention. The COSP plays a crucial role in maintaining momentum and ensuring accountability among the States Parties.

Since its adoption, the UNCRPD has led to significant changes in legislation and policy around the world. Countries that have ratified the Convention are obligated to align their national laws and policies with its principles. This has resulted in greater awareness, increased accessibility, and more inclusive education and employment opportunities for PWDs. The Convention continues to inspire movements and advocacy efforts globally, reinforcing the idea that disability rights are human rights and that every person deserves to live with dignity, autonomy, and equality.

The UNCRPD is more than just a legal document; it is a powerful tool for change, reflecting a global commitment to ensuring that PWDs enjoy the same rights and opportunities as everyone else. Its history, structure, and impact demonstrate the ongoing efforts to build a more inclusive world where diversity is celebrated, and everyone is empowered to participate fully in society. The contributions of dedicated disability rights activists were instrumental in its creation and continue to drive its implementation, ensuring that the principles of the Convention are realized in the lives of persons with disabilities worldwide.

The U.S. and the CRPD

The United States signed the UNCRPD on July 30, 2009, indicating its support for the treaty's principles and its intent to promote and protect the rights of individuals with disabilities. However, despite signing the UNCRPD, the United States Senate has not ratified the treaty. This means that, although the U.S. has expressed its endorsement of the CRPD by signing it, the treaty has not been approved by the U.S. Senate and thus is not legally binding in the United States. The U.S. continues to adhere to its own disability rights legislation, such as the ADA, which served as an inspiration for the UNCRPD.

Main Sections of the UNCRPD

The UNCRPD is a comprehensive document that outlines the rights of disabled persons and the obligations of States Parties to promote, protect, and ensure these rights. It is divided into several key sections:

Preamble: This sets the context and outlines the underlying principles of the Convention.
General Principles (Article 3): Includes principles such as respect for inherent dignity, non-discrimination, full and effective participation and inclusion in society, respect for difference, and acceptance of persons with disabilities as part of human diversity.
General Obligations (Article 4): States Parties commit to ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination.
Specific Rights:

Equality and Non-Discrimination (Article 5)
Accessibility (Article 9)
Right to Life (Article 10)
Equal Recognition Before the Law (Article 12)
Access to Justice (Article 13)
Liberty and Security of Person (Article 14)
Freedom from Torture (Article 15)
Freedom from Exploitation, Violence and Abuse (Article 16)
Living Independently and Being Included in the Community (Article 19)
Education (Article 24)
Health (Article 25)
Work and Employment (Article 27)
Participation in Political and Public Life (Article 29)

Implementation and Monitoring (Articles 33-40): These articles describe the measures for implementation and monitoring, including the establishment of a Committee on the Rights of Persons with Disabilities to oversee the Convention's implementation.

My Ted X talk titled "Pebbles in the Pond of Change

Hari Srinivasan, shares a powerful message about the power of small actions in creating ever-widening ripples in the pond of change. Drawing from personal experiences and the legacy of disability rights leaders, he redefines progress as a journey that starts with simple, accessible steps. His inspiring message encourages everyone to identify and act on their own "small pebbles" to drive societal transformation.

https://www.youtube.com/watch?v=e87-3xydg58

My TedX Talk

My Ted X talk titled "Pebbles in the Pond of Change

https://www.youtube.com/watch?v=e87-3xydg58

https://www.peasepress.com/product-page/essential-truths-the-bay-area-in-color

Section 504

"No otherwise qualified individual with a disability in the United States... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."

This one line powerful statement is the heart of Section 504 of the Rehabilitation Act of 1973, a landmark piece of legislation that laid the foundation for disability rights in the United States. It was a groundbreaking step towards ensuring equal opportunities for individuals with disabilities in various aspects of public life.

The journey to its enactment and enforcement is a compelling narrative of relentless activism, dramatic protests, and the unwavering determination of a community fighting for their rights.

The Birth of Section 504

In 1973, the first federal civil rights protection for people with disabilities, Section 504 of the Rehabilitation Act, was signed into law. Section 504 specifically prohibits discrimination against persons with disabilities by any program or activity receiving federal financial assistance. This law was based on the language of previous civil rights laws that protected women and minorities, recognizing that society had historically treated people with disabilities as second-class citizens based on deeply held fears and stereotypes. These attitudes had translated into pity and persecution and later into policies that were based on paternalism.

Activism and the 504 Sit-in

Despite its promise, the implementation of Section 504 faced significant delays and resistance. Between 1973 and 1977, no regulations were issued to enforce it. During this period, strong regulations were drafted by attorneys in the Office for Civil Rights and sent to the Secretary of Health, Education, and Welfare (HEW) with a recommendation to publish them for public comment. However, opposition from covered entities such as hospitals, universities, and state and county governments led to much delay. The disability community filed a lawsuit in federal court, and the judge ruled that the regulations must be issued but did not specify when.

In response to these delays, the disability community mobilized. One of the most significant actions was the 504 Sit-in at the San Francisco Federal Building in 1977, led by activists like Judy Heumann and Kitty Cone. This sit-in, which lasted 26 days, was the longest nonviolent occupation of a federal building in U.S. history. Kitty Cone, in her "Short History of the 504 Sit-in" on the Disability Rights Education and Defense Fund (DREDF) website, recounts the strategic planning and broad community support that sustained the protest.

Cone writes, "In the Bay Area, a broad cross-disability coalition, the Emergency 504 Coalition, began building for a rally on April 5th, knowing we’d sit in afterwards. We set up committees to take on different tasks such as rally speakers, media, fund-raising, medics, monitors, publicity, and outreach." The outreach committee's success in garnering broad community support from churches, unions, civil rights organizations, and others proved invaluable once inside the building. The Black Panther Party and Glide Memorial Church provided food, and the International Association of Machinists facilitated the transport of demonstrators to Washington."

The sit-in participants endured physically grueling conditions, sleeping on the floor and dealing with stress about their families, jobs, and health. Cone describes how all participants met daily to make tactical decisions in flowing, creative meetings that often went on for hours. This process was critical for developing consensus and a course of action.

Joseph Califano and the Regulations

The central figure of resistance within the government was Joseph Califano, the Secretary of HEW. Califano was reluctant to sign off on the regulations necessary to enforce Section 504. The activists' persistence, however, eventually bore fruit. Public pressure mounted, and the media attention garnered by the protests made it impossible to ignore their cause. On April 28, 1977, Califano finally signed the regulations, making Section 504 enforceable and marking a monumental victory for disability rights.

Impact of Section 504

Section 504 has had a profound impact on the lives of individuals with disabilities and on American society as a whole. Key outcomes include:

Educational Opportunities: Section 504 has ensured that students with disabilities have access to educational opportunities and accommodations, leading to more inclusive schools and universities.
Accessibility: The law has prompted public and private entities that receive federal funding to make their programs and facilities accessible to individuals with disabilities.
Foundation for Future Legislation: Section 504 set the stage for subsequent disability rights laws, including the Americans with Disabilities Act (ADA), by establishing the principle that discrimination based on disability is illegal.

An important reminder

"Disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life." - Judy Heumann (Disability Rights Activist)

ADA is 34 years old

Celebrating the 34th Anniversary of the Americans with Disabilities Act

On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law, marking a historic milestone for disability rights. The ADA has been instrumental in prohibiting discrimination against the disabled in all areas of public life, including jobs, schools, transportation, and public and private places open to the general public.

The journey to the ADA's signing was fueled by the relentless efforts of dedicated disability rights activists. One pivotal moment in this movement was the televised and widely viewed Capitol Crawl on March 12, 1990. Hundreds of disability rights activists gathered in Washington, D.C., to urge Congress to pass the ADA. As part of the protest, dozens of individuals with disabilities left their wheelchairs and crawled up the 83 stone steps of the U.S. Capitol building, dramatically demonstrating the barriers they faced in everyday life. Among them was an 8-year-old girl named Jennifer Keelan, whose participation powerfully symbolized the need for change. Her determination and courage, along with that of others, highlighted the urgent need for comprehensive legislation to protect the rights of people with disabilities.

Key figures in the disability rights movement played crucial roles in advocating for the ADA. The late Judith Heumann (we miss you Judy), a lifelong advocate for the rights of people with disabilities, was instrumental in the fight for the ADA. Her leadership and tireless advocacy helped bring disability rights to the forefront of national consciousness. Ed Roberts, known as the father of the independent living movement, also significantly influenced the disability rights movement, emphasizing the importance of self-determination and community-based support. There were countless others whose contributions were vital in making the ADA a reality, reflecting a broad and united effort toward equality and inclusion.

The ADA consists of five titles, each addressing different aspects of public life:

Title I – Employment: Prohibits discrimination against individuals with disabilities in employment and requires employers to provide reasonable accommodations.
Title II – Public Services: Ensures that people with disabilities have equal access to public services, programs, and activities, including public transportation.
Title III – Public Accommodations: Prohibits discrimination in public accommodations such as restaurants, hotels, and stores, and requires accessible facilities.
Title IV – Telecommunications: Mandates accessible telecommunications services, including relay services for individuals with hearing and speech impairments.
Title V – Miscellaneous Provisions: Contains various provisions, including protections against retaliation and coercion, and guidelines for the implementation of the ADA.

It's humbling that laws like the ADA enable disabled individuals like me to avail of opportunities such as getting into college or even embarking on a PhD journey. Such a thing would have been unimaginable earlier. The ADA's passage represents the collective effort and resilience of countless individuals who fought for equality and accessibility. As we commemorate the 34th anniversary of the ADA, we honor the legacy of those activists and reaffirm our commitment to advancing the rights and inclusion of people with disabilities.

https://www.whitehouse.gov/briefing-room/presidential-actions/2024/07/25/a-proclamation-on-the-anniversary-of-the-americans-with-disabilities-act-2024/

Related Posts: [Disability Legislation], [Disability Rights], [Disability History] [Autism Cares], [ADA], [Capitol Crawl] [Olmstead Act], [Section 504],

Disability Pride Month

The False Moral Authority of Titles

In today's world, holding an advanced degree or prestigious title leads those individuals to think that they are entitled to the role of moral and legal gatekeeper. Such a perspective is not only outdated but dangerously arrogant.

(This echoes the colonial mindset where the "educated colonizers" claimed ipso facto moral and legal authority over those they deemed "uneducated primitives").

One quick path to fame and relevance today is the spread of negative news, fueled by algorithms that amplify these messages. As as Sri Sri Ravi Shankar noted, humans already have a tendency to doubt the positive but not the negative. For instance, when someone says "I love you," it's often met with skepticism ("Really?"), while "I hate you" is silently accepted.

Negative news triggers larger outward reactions, whereas positive news generates internal feel-good responses that don't spread as widely. As a result, negative spins and conspiracy theories have become a quick road to staying relevant and profits in the form of online followers, book deals, speaking engagements.... which in turn helps justify the perception of them as an "expert" and the "moral authority."

This phenomenon has many parallels in the field of autism. Select groups have positioned themselves as the sole experts of autism, their way the only way, and the lone voice of morality. They effectively shut down alternative lines of research in autism or approaches by being the loudest or most powerful voice. This is accompanied by vicious attacks, harassment, and doxxing of those they consider "others." This helps maintain their positions of power, fame and profit - (Perhaps they also get a rush out of this bullying).

The irony is that existing evidence-based practices are often weaponized or misrepresented to justify their stance. Just because something isn't fully explainable or understood yet doesn't mean it should be dismissed as pseudoscience. Rather, it represents science-in-progress. Complex phenomena like autism often defy simple cause-and-effect explanations, waiting for the right methods, technologies, or even an evolution in our scientific thinking to fit neatly into an explainable model.

A 'certification degree' or Ph.D. does not make one all-knowing about a highly heterogeneous condition like autism. We are all still trying to figure autism out. If we had all the explanations and solutions, the quality of life for all autistic individuals would be infinitely better. It’s crucial to remember that science is a process, not a destination. It thrives on curiosity, openness, and the willingness to challenge existing paradigms. True progress in understanding autism, and indeed any complex phenomenon, requires humility, collaboration, and an openness to diverse perspectives.

Let's resist the allure of false authority and the spread of negativity. Instead, let's foster a culture of inquiry and respect, where every voice is heard, and every avenue of research is explored. Only then can we hope to make meaningful progress in understanding and improving the lives of those within the autism community and beyond.

This is pretty horrifying to read

All kinds of trigger warning for this post.

Tennessee DCS (Department of Children's Services) failed children with disabilities... punishments included placing them in solitary confinement, pepper spraying children while naked, having other kids beat one child and shackling and dragging a child across the floor.

https://www.newschannel5.com/news/newschannel-5-investigates/tennessee-dcs-sued-for-abuse-violence-against-children-with-disabilities?utm_source=maropost&utm_medium=email&category=homepage-showcase&utm_campaign=WTVF-Newsletter-Headlines

Celebrating 25 Years of the Olmstead Decision

Celebrating 25 Years of the Olmstead v. L.C Decision

Today marks the 25th anniversary of the landmark 1999 Olmstead v. L.C. case, a pivotal moment that ignited the de-segregation and de-institutionalization of people with disabilities. This case paved the way for community-based supports and services, transforming the lives of countless individuals.

Two years ago, I had the honor of participating in a White House panel discussion commemorating the Olmstead Act's anniversary. The significance of the Olmstead Act cannot be overstated. Just a few decades ago, individuals with significant disabilities, including "higher-support" autistics, were often placed in institutions, hidden away from society.

Back then, families were still advised to send their autistic children away before they became too attached. Many "higher-support" autistics, unable to advocate for themselves, were at the mercy of "well-meaning" professionals who claimed institutionalization was best.

As a child, I didn't fully grasp what institutions were, my only reference being brief scenes from the movie Rain Man. It wasn't until college, during my Disability Studies courses with Professor Victor Pineda, that I truly understood the horrors of institutionalization. On the first day of class, we watched the documentary Lives Worth Living, which highlighted the disability rights movement. One of the most shocking segments featured Willowbrook, an institution in New York where children with disabilities lived in appalling conditions. The doctors at Willowbrook were so alarmed that they invited reporter Geraldo Rivera to expose the situation, shocking the world.

I used to think my low-expectation special education classrooms were degrading enough, but the thought of living in such inhumane institutions is truly chilling. The 2020 documentary Crip Camp mentions a camper from Willowbrook who would overeat to the point of sickness because he never got enough food there.

This history underscores the profound significance of the Olmstead Act for people like me. While we have made significant strides in disability rights, there is still much work to be done. I am deeply grateful to the disability rights icons who have paved the way, making it possible for many of us to enjoy the freedoms we often take for granted.

Though challenges remain, we continue to move forward, inspired by the resilience and determination of those who fought for our rights. Here's to 25 years of progress and many more to come.

Disability Rights

A quote from my chapter in the anthology below

Anthology available at: https://www.peasepress.com/product-page/essential-truths-the-bay-area-in-color

We need SOLUTIONS

We need action on ACTUAL SOLUTIONS for Autism.

Communication, Biomedical physiology (physical/mental health), Precision Pharma, Healthcare, Sensorimotor, Policy Priorities, Funding Priorities, Supports services, myriad equity of access issues.

Lets work on leveling the playing field.

QUALITY OF LIFE means ALL Autistics get to avail of opportunities

Victor Pineda the new head of CIL

Excellent news about Victor Pineda getting to be the new head of Center for Independent Living.

https://thecil.org/press-release/center-for-independent-living-welcomes-dr-victor-santiago-pineda-as-new-executive-director-amid-crucial-times-for-disability-rights/

Great pick for CIL. I remember former CIL head James Stuart referring to Victor as a "Super Crip".

In an old blog post, I had written "I’ve come to deeply admire Dr. Pineda and I have a lot to learn from him on deconstructing the seemingly impossible into a possible."