Nothing about us, without us.

The phrase "Nothing about us without us" (NAUWU) gained prominence in the 1980s as disability rights movement began to gain momentum and assert the rights of disabled individuals. It resonated with the broader social justice movements that advocated for marginalized communities to have control over their own destinies and be actively involved in decision-making processes.

NAUWU represents a powerful demand for inclusivity, equal participation, and the recognition of disabled individuals as the experts of their own lives. It encapsulates the ongoing struggle for disability rights and the importance of centering the voices and experiences of disabled people in all matters that concern them.

NAUWU  is grounded in the principle of self-advocacy and the belief that the disabled should have a voice and agency in shaping policies, laws, and programs that directly impact them. It emphasizes the importance of including the perspectives and experiences of disabled individuals in all aspects of disability-related discussions, rather than making decisions on their behalf without their input or representation.

Origins of the phrase NAUWU: 

My friend and fellow autistic Rebecca Eli-Long states "I've been told that it entered US disability rights spaces via South African activists. At least that's what's reported in James Charlton's book, Nothing About Us Without US"

While it is challenging to attribute the phrase to a specific individual, it has been embraced and popularized by disability rights activists, organizations, and scholars worldwide. 

The slogan has become a rallying cry for disability rights advocates, reinforcing the core principle of empowerment, self-determination, and the right to be heard and respected.

One notable event associated with the early use of the phrase is the International Year of Disabled Persons, which was proclaimed by the United Nations in 1981. This declaration helped to bring global attention to disability rights and led to increased advocacy efforts by disabled individuals and organizations.

Context of Autism Research 

Recent years have seen some movement in discussion groups led by university and private research labs to hear inputs from all stakeholders, which includes autistics, family members, professionals (therapists, medical professionals, caretakers etc), with a long term view that such participatory research will lead to meaningful research and meaningful solutions. 

The good part is that finally there is some acknowledgement of the principle of NAUWU. 

Good beginning, but only the beginning. Let's not celebrate just yet. There are still miles to go. 

Why? Because the idea of "Nothing About Us Without Us" is 40 years old (in the 1980s) and it has taken all the way till the 2020's to see movement towards even acknowledging our voices.

Is it going to take another 40 years to see the next step of our voices translating into research and actual translatable solutions on the ground (instead of sitting as academic theory).

And will those solutions address everyone's needs or continue to focus on a narrow band of autistics, which means the rest of us continue to slip through those cracks and get left behind. 

What is the timeline? Is it even going to happen in my life time? 

 

Honestly in the the 2.5 decades I've been around, I have not seen much in terms of translatable autism solutions. We are still being peddled therapies and theories that work for a narrow band, but applied to all.

After all, there is a  ton of profits, fame and power for select groups in the autism space, so there is competition to becoming the loudest voice and the sole authoritative voice in the autism space, even if it means demeaning others. 

The irony being no one is an autism expert, as no one knows still enough about autism to be an expert. 

There is the occasional token nod to NAUWU to brush that argument out of the way. 

The result is not just the lack of solutions but continued exclusion and a poor quality of life and access to opportunities for the remaining autistics. To the add to the confusion, the autism community seems to be divided into  polarized camps and folks like me who desperately need translatable solutions are not getting them. 

Mental Age

The concept of "mental age" in assessments has been subject to criticism and limitations. Here are some reasons why

• Normative Bias: Mental age is based on comparing an individual's performance to the average performance of a specific age group. However, these age norms may not adequately account for cultural, linguistic, or socioeconomic differences. The concept assumes that all individuals progress at the same rate, which may not be true or fair across diverse populations.
• Arbitrary Cutoffs: Mental age relies on the notion of discrete age categories, which can lead to arbitrary cutoffs and potential misclassifications. Development is a continuous process, and individuals may display a range of abilities that do not neatly align with specific age groups.
• Lack of Sensitivity: The concept of mental age does not capture the full complexity and multidimensionality of human intelligence. It may oversimplify and overlook individual strengths, weaknesses, and variations in cognitive abilities across different domains.
• Limited Predictive Value: Mental age alone may not provide sufficient information about an individual's future development or functional outcomes. It does not account for the dynamic nature of cognitive abilities and the potential for growth and change over time.
• Reinforcement of Deficit-Based Approaches: The focus on mental age as a deficit-oriented measure may perpetuate stigmatization and negatively impact individuals' self-perception and opportunities for growth.

It is essential to approach assessments and diagnostic criteria with a comprehensive and nuanced perspective, considering multiple factors beyond a single measure like mental age to ensure a holistic understanding of an individual's abilities and needs.

Disability Rights Movement

The disability rights movement (DRM) refers to a social and political movement advocating for equal rights, inclusion, and improved quality of life for people with disabilities. The movement seeks to challenge and eliminate discrimination, stigmatization, and barriers that prevent disabled folks from fully participating in society.

DRM emerged in the late 1960s and gained significant momentum in the 1970s and 1980s. One of the key milestones was the passage of the Rehabilitation Act of 1973 in the United States, which prohibited discrimination on the basis of disability in programs receiving federal funding. This was followed by the Americans with Disabilities Act (ADA) in 1990, which further strengthened protections and rights for individuals with disabilities in various aspects of life, including employment, transportation, public accommodations, and telecommunications.

DRM focuses on promoting the principles of accessibility, independence, self-determination, and inclusion. It advocates for reasonable accommodations, accessibility in the built environment, educational opportunities, employment opportunities, healthcare access, and overall social acceptance and support for people with disabilities.

DRM has made significant advancements in raising awareness, changing societal attitudes, and implementing legal protections for people with disabilities. However, there are still ongoing challenges and areas for improvement to ensure full inclusion and equal opportunities across all aspects of life.

Dear Colleague

https://www.justice.gov/crt/case-document/dear-colleague-letter-online-accessibility-postsecondary-institutions 

On May 19, 2023, the Justice Department and the Department of Education jointly issued a Dear Colleague Letter reminding colleges, universities, and other postsecondary institutions to ensure that their online services, programs, and activities are accessible to people with disabilities.

Letter at chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.justice.gov/crt/case-document/file/1584491/download

 

Principle of inverse effectiveness

[Concepts in Sensorimotor Research]

The principle of inverse effectiveness is a phenomenon observed in multisensory integration, which refers to how our brain combines information from multiple sensory modalities, such as vision, hearing, and touch. According to this principle, the strength or effectiveness of multisensory integration is greatest when the individual unisensory cues are weak or ineffective on their own.

Ergo, when the individual sensory cues are relatively weak or have low impact, the brain tends to rely more on multisensory integration to enhance the perception and processing of the stimuli. eg: people with hearing loss exhibit increased visual abilities, and increased crossmodal activation within the auditory cortex. 

This principle suggests that the brain optimally integrates sensory information from multiple modalities to improve perception and increase sensitivity, particularly in situations where the sensory cues are less informative or ambiguous.

The principle of inverse effectiveness highlights the advantage of combining multiple sensory inputs in situations where the individual senses may provide limited or unreliable information. By integrating sensory cues from different modalities, the brain can enhance the overall perception and make more accurate judgments about the external environment. This principle has been observed across various species and sensory domains and is believed to reflect a fundamental property of multisensory processing.

Spoon Theory

Spoon theory is a metaphor used to describe the limited amount of physical and emotional energy available to people with disabilities. The theory was created by Christine Miserandino, a woman with lupus, to help explain to her friend what it was like to live with a chronic illness. 

The metaphor works by using spoons as a representation of a person's energy reserve for the day. Each activity, such as getting out of bed, taking a shower, or going to work, requires a certain number of spoons. People with disabilities have a limited number of spoons available to them each day, and they must carefully budget their energy throughout the day to avoid running out of spoons.

The theory has become a popular way for people with disabilities to explain their experiences to others, and it has also helped to raise awareness about the challenges faced on a daily basis. It also emphasizes the need for empathy and understanding towards people who may be struggling with challenges that affect their ability to function in day-to-day life.

In the context of autism, spoon theory can be used to explain the challenges that many autistics may face when it comes to sensory overload and social interaction.

Sensory processing issues can make everyday tasks like going to the grocery store or attending a social event incredibly exhausting. These experiences can be likened to using up spoons, or units of energy, more quickly than someone without sensory processing issues might. Additionally, social interaction can also be a source of stress and exhaustion for people with autism. Social situations can require a lot of cognitive and emotional effort, which can also deplete one's energy reserves.

By understanding spoon theory in the context of autism, people can better appreciate the energy expenditure required for autistics to navigate the world. This can lead to increased empathy and understanding, and help to create a more inclusive and supportive environment for autistics.

The Grandmother of the Disability Rights Movement turns 103

 Zona is the mother of Ed Roberts, who started the very first Disabled Students Program at UC Berkeley as well as starting the Independent Living Movement. 

So if Ed is the father of the Disability Rights Movement, she is the grandmother behind it all. 

https://alumni.berkeley.edu/california-magazine/online/meet-zona-roberts/?utm_source=mag-newsletter&utm_medium=email&utm_campaign=california

Imbecile

A history lesson in degrading terminology around disability. 

The term "imbecile" has historically been used as a diagnostic label for neurodevelopmental disabilities like autism. 

Origins: The term coined in the 18th century by French physician Philippe Pinel, who used the term to describe individuals who were intellectually disabled but still able to function in society with some support. However, over time the term came to be used more broadly to describe individuals with a range of intellectual disabilities, including those who were severely impaired and unable to function independently.

Justify Eugenics: The term was widely used in the US and Europe during the 19th and early 20th centuries and was used as part of a broader eugenic movement that sought to control and eliminate disabled people from the population. The use of terms like "imbecile" and "moron" were used to classify individuals based on their perceived level of intelligence, and were used to justify forced sterilization, institutionalization, and other forms of discrimination.

One of the most well-known cases involving the use of the term "imbecile" was the Supreme Court case Buck v. Bell, in which the court upheld the constitutionality of forced sterilization for individuals classified as "imbeciles." The decision paved the way for similar laws in other states, and resulted in the sterilization of tens of thousands of individuals with disabilities.

Buck v. Bell (1927): This case involved the forced sterilization of a woman who was deemed "feeble-minded" by the state of Virginia. In its decision, the Supreme Court upheld the constitutionality of Virginia's sterilization law and stated that "three generations of imbeciles are enough." (274 U.S. 200)

Mandated Removal in 1970s: The term "imbecile" fell out of use in the early to mid-twentieth century as medical and psychological professionals began to adopt more standardized and scientific classifications for intellectual disabilities. However, the use of the term persisted in some legal and bureaucratic contexts until the 1970s, when the Rehabilitation Act of 1973 mandated the removal of discriminatory language from federal laws and policies related to individuals with disabilities. 

Today, the use of terms like "imbecile" is generally considered outdated and offensive.

Disabled People are not ADA People.

lavantconsulting

: 

 People with disabilities are not “Americans with Disabilities Act people” or “Americans with Disabilities Act Guests.” The ADA is a law that increases equity for disabled people, not a label of any individuals. Referring to people with disabilities in this way is disrespectful and never appropriate.

UC Berkeley mourns Judy Heumann

Berkeley News on the late Judy Heumann

https://news.berkeley.edu/2023/03/07/uc-berkeley-mourns-celebrates-the-life-of-disability-rights-icon-judith-heumann/

The real meaning of Independent Living

Remembering the late Judy Heumann

 

Refusing to accept and making a fuss

Remembering the late Judy Heumann

 

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

Historic gains in disabled employment during the pandemic.

"The increase in work-from-home arrangements and greater flexibility in work hours seen during the height of the pandemic may have permanently opened new employment opportunities for people with disabilities"

The question is how do we sustain the gain in employment seen during the pandemic due to hybrid work. 

Author of the Social Model of Disability

 What I learned today from Cal Montgomery. Thx Cal. 

Vic Finkelstein, not Mike Oliver, was the author of the social model. Oliver's book just hit big in the U.S.

Holiday Giving

In this holiday season of giving, a plug for all autism/disability organizations I've been involved or benefited from growing up with autism. All of them have done impactful work on varying fronts and close to my heart. Consider donating. It takes a village where many different angles need to be acted on. 

• Autistic Self Advocacy Network https://autisticadvocacy.org/about-asan/
• Disability Rights Education and Defense Fund https://dredf.org/
• Autism Society of America https://autismsociety.org/
• Communication First https://communicationfirst.org/
• The Brain Foundation https://brainfoundation.org/
• Inclusive World. https://inclusiveworld.org/

Doomscrolling

Came across a new term, rather a term that's been around for a while.

Doomscrolling is the act of compulsively scrolling through negative news or social media feeds, often for hours at a time, despite feeling upset or stressed by the content. The term "doomscrolling" gained popularity during the COVID-19 pandemic, as people spent more time online and were inundated with a constant stream of alarming news about the virus and its effects. This behavior can lead to feelings of anxiety, hopelessness, and helplessness, as well as difficulty sleeping and concentrating

 So it became this "vicious cycle  in which users find themselves get stuck in a pattern of seeking negative information no matter how bad the news is." 

It does not help that, online/social media algorithms are designed to feed us "attention-capturing" information and give us more of whatever we had clicked on. The result was a newsfeed of endless doom, which could trigger more compulsive scrolling behavior. 

The disabled/autistic are equally vulnerable to these influences, further compounding our mental health issues. 

Here is a research paper on this. 

Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.

A wider picture

Along with the (oh so super-interesting) science talks, there was also an Unconscious Bias workshop at yesterday's Vanderbilt Brain Institute retreat

Paying attention - Very applicable for the highly distracted ADHD person like me, with a thousand thoughts running through my head. 

Rest of message very relevant too, for all.  "notice the patterns and treatments of experiences of members of both privileged and marginalized groups"

I was also very appreciative that there was mention of (dis)ability as an identity and often overlooked as a marginalized group along with race/ethnicity etc. It is good to hear such conversations at Vanderbilt. 

I think back to what Arlene Mayerson of DREDF had once said at my Autism Class at UC Berkeley - Civil rights for Disability mean that you not just take away the sign so you can sit anywhere on the bus,  but also giving the disabled person a way to get on the bus in the first place.  

This is really the bigger/wider view for Disability Inclusion. It's not just about allowing disabled people to occupy the same space but also about the accommodations (to get on the bus), supports (to stay seated on the bus) and making disabled people feel they belong, a sense of community, so that they can SUCCEED in that environment. 

 @VanderbiltU #VanderbiltBrainInstitute

Image Description. Text on large screen reads, PAN. Pay Attention Now. Just as a movie camera pans the environment to see the whole picture, we need to continuously pan all around us as we increase our ability to notice the patterns and treatments of experiences of members of  both privileged and marginalized groups. Awareness. While this was at a Neuroscience retreat, this so applies to disability. 

This time last year

 At the RadMad Disability Lab at UC Berkeley

DREDF Spotlight

This month is Disability Rights.  Thrilled to be on the same board with the likes of living disability legends like Judy Heumann. What an honor to be invited. 

 https://mailchi.mp/dredf/dredf-monthly-august-22

Hari Srinivasan joins the DREDF Board of Directors.

Hari Srinivasan just moved from Berkeley to Nashville, but we're lucky that he's staying connected to Berkeley by joining DREDF's Board of Directors. Hari has autism and ADHD with very limited speech ability, and primarily uses Augmentative and Alternative Communication (AAC) to communicate. He is a Ph.D. Neuroscience student at Vanderbilt University, a PD Soros Fellow, and a Fellow at the Frist Center for Autism and Innovation. Hari graduated from UC Berkeley in 2022 as a University Medal Finalist, along with a Departmental Citation Award, Highest Honors, Phi Beta Kappa, and Psi Chi. As an undergraduate Haas Scholar, he carried out a year-long independent funded research on awe and empathy in autism. He also served as student president of the Berkeley campus organization Autism: Spectrum at Cal, stressing the idea of autism needing to go beyond mere Awareness, Acceptance, and Inclusion and towards Belonging. Hari's other affiliations include serving on the board of the Autistic Self-Advocacy Network, and as a Non Federal Committee member of the Interagency Coordinating Committee (IACC). He is also a member of the Council of Autistic Advisors for the Autism Society of America and sits on the Community Advisory Board for The Brain Foundation.