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IDEA

 Understanding the Individuals with Disabilities Education Act (IDEA)


In her memoir "The Heumann Perspective," the late legendary disability rights activist, Judy Heumann recounts how she was refused entry to public school as a child because she was deemed a "fire hazard." Her story sets the stage for understanding the importance and impact of the Individuals with Disabilities Education Act (IDEA).

IDEA was born out of a broader movement for disability rights in the United States, heavily influenced by the civil rights movements of the 1960s and 1970s. Before its enactment, many children with disabilities were excluded from public education or received inadequate services. Recognizing the need for federal legislation to protect the educational rights of these children, the Education for All Handicapped Children Act (EHA) was enacted in 1975. This marked a significant shift towards inclusive education and equal opportunities. On October 30, 1990, the act was reauthorized and renamed the Individuals with Disabilities Education Act (IDEA). Further amendments in 1997 and 2004 were made to better serve students with disabilities, ensuring they have access to a free and appropriate public education
Influential Figures in the Making of IDEA

Several key figures and advocacy groups played pivotal roles in the development and implementation of IDEA:

  1. Judith Heumann: A lifelong disability rights advocate, Heumann's activism and leadership, particularly through her work with the Center for Independent Living and her role in the U.S. Department of Education, were instrumental in shaping policies related to special education.

  2. Tom Harkin: A U.S. Senator known for his strong advocacy for disability rights, Harkin played a significant role in the passage and reauthorization of IDEA, ensuring that the needs of students with disabilities were addressed in federal law.

  3. Parent Advocacy Groups: Organizations like the National Association for Parents of Children with Visual Impairments (NAPVI) and the National Down Syndrome Congress (NDSC) were crucial in lobbying for the rights of children with disabilities and the creation of IDEA.

Key Provisions of IDEA

IDEA is designed to ensure that children with disabilities receive a free and appropriate public education (FAPE) tailored to their individual needs. The main provisions of IDEA include:
  1. Free Appropriate Public Education (FAPE): Ensures that all disabled children have access to public education at no cost to their families.

  2. Individualized Education Program (IEP): Requires schools to develop an IEP for each student with a disability, outlining specific educational goals and the services the student will receive.

  3. Least Restrictive Environment (LRE): Mandates that disabled children should be educated alongside their non-disabled peers to the greatest extent appropriate.

  4. Parental Participation: Ensures that parents are involved in decision-making processes regarding their child's education.

  5. Procedural Safeguards: Provides protections for students and their families, including the right to due process hearings and mediation to resolve disputes.

  6. Evaluation and Eligibility: Establishes criteria for identifying and evaluating children with disabilities to determine their eligibility for special education services.


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:

  1. Title I – Employment: Prohibits discrimination against individuals with disabilities in employment and requires employers to provide reasonable accommodations.
  2. Title II – Public Services: Ensures that people with disabilities have equal access to public services, programs, and activities, including public transportation.
  3. Title III – Public Accommodations: Prohibits discrimination in public accommodations such as restaurants, hotels, and stores, and requires accessible facilities.
  4. Title IV – Telecommunications: Mandates accessible telecommunications services, including relay services for individuals with hearing and speech impairments.
  5. 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. 



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



Embracing Kuleana - Our Collective Responsibility Towards Autism

Embracing Kuleana -  Our Collective Responsibility Towards Autism

(Jun 21, 2024 is Native Indigenous People's day)

In the Hawaiian language, the word "kuleana" embodies a profound concept, combining responsibility and privilege. "Kuleana finds you if you are open to it." (1). This notion can be extended to our approach toward autism, It is our kuleana—our responsibility and privilege—to ensure that the needs of all autistic individuals are met with empathy and understanding, including the needs of the most marginalized autistics.

This sense of kuleana aligns with the wisdom of the late legendary disability rights activist Judy Heumann, who reminded us that "disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life.

Society has a crucial role in dismantling barriers and fostering a world where all individuals, regardless of their abilities, can live fulfilling lives. It means advocating for accessible education, healthcare and medical solutions, housing, care services, employment opportunities, and social inclusion. Embracing our kuleana towards the autism community is about more than just providing resources; it's about fostering an approach that looks at both strengths-based opportunities and challenges-based solutions.

By being open to kuleana, we create a more inclusive world.

- Hari S

(1) Aulani Wilhelm is the Chief Strategy and External Affairs Officer at Nia Tero, an organization dedicated to working in solidarity with Indigenous Peoples. The quote is taken from a May 30, 2024 webinar. Celebrating Conservation, Ocean Justice, and Climate Leadership in the Asian American, Native Hawaiian, and Pacific Islander Community.

Neurodiversity Nuts and Bolts

Neurodiversity is a concept that views neurological differences as natural and valuable variations of human diversity. 

Inclusion and Exclusion in the Neurodiversity Paradigm

Neurodiversity primarily includes disabilities like autism, ADHD, dyslexia, dyspraxia, and Tourette syndrome, along with disabilities that are labeled psychiatric in nature . It tends to focus on conditions that affect cognition, communication, sensory perception, and behavior. Disabilities that are less often included in discussions of neurodiversity include those that are purely medical in nature or those that do not involve differences in neurodevelopment, such as physical disabilities like spinal cord injuries or muscular dystrophy.

Neurodiversity as a Social Construct

Neurodiversity is a social construct, meaning it is a concept that society has created and accepted to understand neurological differences in a positive light. This does not imply that neurodiverse conditions themselves are not real; rather, it highlights how society chooses to value these conditions. As a social construct, neurodiversity is useful in promoting a more inclusive view of humanity, valuing diverse ways of thinking and interacting with the world. However, like all social constructs, its impact depends on how it is applied and in what context.

Origins and Evolution of the Concept

While neurodiversity is often attributed to Judy Singer, who discussed it in a 1999 book chapter, recent research clarifies that the concept was a collective effort by many autistic activists during the 1990s. As highlighted in the 2024 paper "Neurodiversity Misattribution," the theory of neurodiversity emerged from discussions and activism within the autistic community, particularly on the "Independent Living" email list in the mid-1990s. These discussions were part of a broader movement of autistic self-advocates who aimed to shift societal perceptions and promote understanding and acceptance of neurological diversity. Correct attribution is important because it acknowledges the grassroots nature of the neurodiversity movement and the contributions of many individuals who worked to develop and promote the concept.

The concept of neurodiversity builds upon the foundation laid by the broader disability rights movement, which advocates for the inclusion and acceptance of people with disabilities as full members of society. This movement, which began gaining momentum in the 1960s and 1970s, challenges societal barriers and attitudes that limit the participation of disabled individuals and promotes the rights of disabled people to be fully included in all aspects of society.

The benefits of a Neurodiversity Perspective


The neurodiversity perspective draws upon important ideas from the wider disability rights movement, particularly its emphasis on inclusion, empowerment, and a strengths-based approach to understanding differences. These include.

Education and Employment: Neurodiversity promotes practices that accommodate diverse learning/work styles and neurological profiles, aligning with the broader disability rights movement's advocacy for adapting educational/workspace environment to meet the needs of all individuals rather than enforcing a uniform model.

Acceptance and Inclusion: By encouraging acceptance of diverse ways of thinking and behaving, the neurodiversity perspective helps reduce stigma and discrimination against neurodiverse individuals.

Strengths-Based Approach: By emphasizing the strengths and abilities of neurodiverse individuals, neurodiversity highlights unique talents, such as exceptional attention to detail or innovative problem-solving skills.

Empowerment: Through advocating for accommodations and changes in societal structures, neurodiverse individuals are empowered to participate fully in society, promoting a sense of belonging and inclusion.

Criticisms and Controversies


Despite its positive aspects, the concept of neurodiversity has faced several criticisms and controversies:

Exclusion of  the more-disabled individuals: Early discussions and formulations of the neurodiversity movement often focused on individuals who could advocate for themselves. This focus led to criticism that the movement did not fully address the experiences of those with more severe disabilities who might not be able to participate in self-advocacy in the same way. Over time, there has been an ongoing dialogue within the neurodiversity movement regarding the inclusion of individuals with more severe disabilities. Some advocates have pushed for a broader understanding that includes those with higher support needs, ensuring that neurodiversity represents a spectrum that encompasses all forms of neurological differences, regardless of the level of disability or support required.

Minimization of Challenges: Some argue that while the neurodiversity framework is empowering, it may inadvertently minimize the real challenges and needs that some neurodiverse individuals face, such as co-occurring conditions or the need for specific support and interventions.

Over-Romanticization: There is a concern that neurodiversity sometimes over-romanticizes neurological differences, ignoring the fact that for some, these differences can lead to significant difficulties that impacts their daily living.

Research on Neurodiversity

Research on neurodiversity spans a range of disciplines, including psychology, education, sociology, and neuroscience. The purpose of this research is to better understand the experiences and needs of neurodiverse individuals, to develop more inclusive educational and workplace practices, and to challenge existing paradigms that may not fully accommodate neurological diversity.

Other Disability Constructs that Neurodiversity aligns with.

Neurodiversity aligns with numerous other constructs in the broader disability world. Together, these constructs contribute to a broader understanding of diversity and challenge societal norms that marginalize disabled and neurodivergent people:


Mad Pride Movement: Challenges traditional views of mental health and psychiatric conditions, advocating for the rights and dignity of individuals with lived experiences of mental health conditions. It seeks to reclaim terms like "madness" and emphasize the value of diverse mental experiences, pushing against the stigma and discrimination faced by those with psychiatric disabilities.

In fact the name of the unique makerspace disability lab at UC Berkeley is "Rad Mad Disability Lab". It was a privilege for me to lead Team Propaganda during my years at that lab. 

The Social Model of Disability: Focuses on societal barriers rather than individual impairment, positing that disability is caused by the way society is organized, rather than by a person’s impairment or difference. It emphasizes the need to remove barriers in society—whether physical, attitudinal, or systemic—to enable full participation and inclusion of disabled people.

The Human Rights Model of Disability: Rooted in international human rights law, such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD), this model emphasizes the rights of disabled people to full inclusion, participation, and equality in all aspects of society. It advocates for societal change to eliminate discrimination and barriers.

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

I was also fortunate enough to work on creating ~40 case studies on low resource countries that have implemented the UNCRPD, as a research associate at Prof Victor Pineda's "World Enabled" 

Crip Theory: Challenges normative ideas of what it means to be "able" or "disabled," questioning societal norms about ability and disability, much like neurodiversity challenges norms about neurological functioning. Crip theory advocates for a more expansive understanding of diversity that includes all forms of bodily and neurological variation.

Disability Justice Framework: Expands on the disability rights movement by incorporating an intersectional approach, recognizing the interconnectedness of ableism with other forms of oppression such as racism, sexism, and heteronormativity. Disability justice highlights a commitment to recognizing and valuing diverse identities and experiences, advocating for a holistic approach that respects each individual's humanity and complexity.

Deaf Gain: Rather than viewing deafness as a loss or deficit, the concept of Deaf Gain frames it as a unique and valuable way of being in the world. This perspective highlights the benefits and cultural richness of the Deaf community, challenging societal assumptions about hearing and encouraging the appreciation of Deaf culture, language, and experiences.

Cultural and Linguistic Identity Models: Often used within Deaf and disability communities, these models emphasize the importance of cultural and linguistic identity as central to a person’s experience. They recognize that identity and culture, including communication styles and sensory experiences, are integral to the person and should be respected and valued as such.

Social Constructivist Approaches: Emphasize that many of the limitations experienced by disabled individuals are socially constructed rather than inherent to the individual. In disability studies, social constructivism explores how societal attitudes, policies, and environments create barriers to participation and inclusion.

Inclusive Research Paradigms: Prioritize the involvement of disabled people as active contributors or leaders in research that affects their lives. This contrasts with traditional research models that often exclude disabled people from meaningful participation. Inclusive research values the lived experiences of disabled individuals and ensures that their voices are central to research and policy development.

Nothing About Us Without Us:
This principle, which originated from the disability rights movement, asserts that decisions affecting disabled people should not be made without their input and involvement. It advocates for the inclusion and leadership of disabled individuals in all matters that concern them, ensuring that their voices are heard and respected.

Relational Autonomy: Recognizes that autonomy and decision-making are often supported and facilitated through relationships with others, rather than being purely individualistic. In the context of neurodiversity, relational autonomy acknowledges that neurodivergent individuals may rely on supportive relationships to navigate social and systemic challenges while still maintaining control over their decisions and lives.


Essentially, while Neurodiversity has its criticisms and limitations, a neurodiversity perspective plays a crucial role in promoting acceptance and understanding of neurodiverse individuals in society. The alignment of neurodiversity with other constructs from the disability rights world underscores its importance in challenging societal norms and fostering a more inclusive and equitable world for all.




The role of the autistic in research

Thoughts around autistic people leading research rather than only participate by giving accounts of lived experiences.

I think rather than talking about one autistic or neurotypical being the leader, which seems to imply a position of dominance by one group, we should be thinking more in terms of what Judy Heumann used to term as Collaboration Cooperation. Both disabled researchers and non disabled researchers need to work together for meaningful change. And most research is a team effort anyway. What the non disabled researchers bring to the table is a lot of experience in how to go about research and they’ve had a couple of centuries of head start in this. When you combine this with collaboration and leadership of autistic researchers you get the following added benefits.
  1. Autistic insights through a nuanced understanding of autistic experiences that cannot be fully captured by observation or second-hand accounts. 
  2. Innovative approaches through distinct cognitive and perceptual experiences. This can lead to innovative research methods and findings that might be overlooked by non-autistic researchers. 
  3. Increased relevance and application towards practical and relevant issues. 
  4. Empowerment and representation as autistics in leadership, challenges traditional narratives of them only being research subjects. 
  5. Reducing bias in data interpretation from a neurotypical lens. 
  6. Building trust among autistic participants that this research is likely to be ethical and beneficial.  
  7. Policy and practice impact as autistic researchers are more likely to advocate for changes that directly improve the lives of autistics. Their leadership in research can influence policy, educational practices, and therapeutic approaches in ways that are more aligned with the needs of the autistic community.

Disability in Strength

A new mural titled “Disability is Strength, at Oakland Airport honors visionaries who helped 
build the movement for disability rights and independence, and present a vision for a future of full inclusion, rights and justice.The mural features disability rights pioneers Ed Roberts, Judith Heumann and Brad Lomax.

Judy Heumann, one of the great and recently deceased disability rights early advocates once said, "Independent Living isn't doing everything by yourself – it's being in control of how things are done."







HEW sit-in continues - Disabled vow long fight

Daily Cal Headlines ... April 11, 1977: 
"HEW sit-in continues - Disabled vow long fight." 
from Day 6 of the nearly month-long sit-in.



highlights:

CeCe Weeks said: "It's the first militant thing we've ever done. There is a new political movement throughout the land. We're going to stay till we're dragged out."

Although HEW Secretary Califano said he would sign the revised regulations, Kitty Conetalks about how those are inadequate and called upon President Carter to sign the original regs immediately as he had promised he would do.

State Director of the Department Of Rehabilitation Ed Roberts (former CIL Director) said "We've got to keep up the pressure."

Demonstrators Mary Jane Owen and then-CIL Deputy Director Judith Heumann had gone on a hunger strike.

Donations were pouring in from "such politically dissimilar groups as the Black Panthers and Safeway stores, McDonald's and the United Farm Workers. 'We couldn't do this without the support from outside," Cone said. 'We're really excited by the community's response.'"

"We're basically happy and strong," Weeks said. "There's more energy here all the time," she said.

------

That was indeed a time. The attached photo is a scan from a book of about 100 Daily Cal front pages: "The Daily Californian's Best of Berkeley 1960-1980, publ by the Independent Berkeley Student Publishing Company, 1980.



Daily Cal photo caption:

“The nearly 100 protesting disabled staged a sit-in [to demand the passage of the long-delayed Regulations implementing section 504 of the 1973 Rehabilitation Act] at San Francisco’s HEW Office.”

Section 504, the first disability civil rights act, Required nondiscrimination of people with disabilities by end of the end by any entity receiving federal funds.

These Regulations became the model for the Americans with Disabilities Act 13 years later, which prohibited discrimination against people with disabilities in virtually all areas of public life.

ASA Press Release




 I get quoted in this press release.




The Autism Society of America is taking direct action at a national level on multiple priority issues that impact Autistic individuals. In particular, the organization is highlighting the importance of passing legislation that provides additional funding for home and community-based services (HCBS) and addressing employment disparities. This includes the Better Care Better Jobs Act and the HCBS Access Act.

“The current system of supports and services are set up such that there can be a sudden stop in services for the most absurd of reasons. Such policies need to change,” states Hari Srinivasan, an Autistic student at Vanderbilt, and member of the Autism Society’s Council of Autistic Advisors. “I find myself in this strange situation where the PhD stipend makes me ineligible for SSI, which in turn is linked to all state-funded disability supports and disability health insurance that I have relied on all my life. My significant Autism challenges and required supports, did not magically go away in graduate school. It is like a financial penalty on the disabled person to want to aspire for higher education and the pursuit of the American Dream.”

I want to relate this back to what the late Judy Heumann said in her 2019 interview with me for the Daily Cal [post on unedited longer interview], [Daily Cal article]

"There is currently a huge legislative disincentive for people with more significant disabilities who depend on services — such as Medi-Cal health insurance, Social Security and personal attendant services — from being productively employed. She does not want to hear stories similar to that of her friend who had to turn down a job she was well qualified for because of the fear of losing these crucial services. She would also like to see legislative policy changes so that employers see disability as just another diversity category." - Daily Cal 11/26/19




Requesting Accommodations

At the Frist Center for Autism & Innovation and Mentra webinar. 

Below are my responses to two questions
What are the most important accommodations to ask for during your time as a student?
Is there a best practice for navigating disability services within institutions, that can often make it hard for neurodivergent people?


Remembering Judy @DREDF

Last year, I had been invited to join the DREDF board, my response to joining was a resounding YES. 

At the first board meeting on Aug 12,2022, it was the late Judy Heumann who nominated me to the board and the motion was seconded by Christina Mills. The board voted unanimously to have me join the board. 

Thinking of you Judy, as we head into the next board meeting without you today. You were there at start of DREDF to make it a reality and later on its board, and we will miss your presence. 

Judy, My Friend: A Tribute to an Unparalleled Disability Rights Legend

Judy, My Friend: A Tribute to a Disability Rights Legend


Judy my friend, I miss you dearly

But your legacy lives on, ever so clearly

As a trailblazer, a hero, a friend

Your spirit will never, ever end