NASEM: Cultivating Accessible Educational Pathways and Spaces

 

Event by National Academies of Sciences, Engr and Medicine. 

Disrupting Ableism and Advancing STEM:  

Cultivating Accessible Educational Pathways and Spaces 

THURSDAY, JUNE 15, 2023, 

I was on the the panel that runs from 1:35pm ET - 2:15pm ET

Recording link 

"This virtual session is a critical element of Disrupting Ableism and Advancing STEM: Cultivating Accessible Educational Pathways and Spaces, the fourth event in the five-part Disrupting Ableism and Advancing STEM conversation series.  Overall, this event in the series will focus on the important role of education in preparing students with disabilities as they enter the STEM ecosystem.  Discussions will focus on the need to challenge assumptions about who can learn and succeed in STEM and the need to make direct changes to policies and practices to facilitate positive educational experiences for students. Examples will include asset based approaches to learning in classrooms, laboratories, online, and in the field. 

Got a nice feedback email today. 

"My name is ____ and I work at a medical university in a northern town in ___Ontario Canada. I saw your presentation today on cultivating accessible educational pathways and spaces. I was completely blown away by your presentation. What you have accomplished is incredibly impressive. I not only applaud you but the professors who went out of their way to make labs accessible for you. I think as a medical school, we are behind the ball so to speak with regards to accommodating the needs of those with different abilities....... This entire series has been fascinating to me. Thank you for sharing."

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On behalf of the planning committee, I want to thank you for being part of the NASEM Disrupting Ableism and Advancing STEM discussion series.

This event was very well received, and your panel’s discussion was truly fantastic. Thank you for your leadership and for taking time to share your insight and expertise.

It feels like a historic and meaningful inflection point for people with disabilities in STEM, and we are grateful for your role in driving that change.

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On behalf of the planning committee for the Disrupting Ableism and Advancing STEM conversation series and the National Academies staff, I wanted to express my sincere gratitude to each of you for an informative and engaging panel session. We are proud to have brought together such an amazing group of individuals to speak about Lived Experiences: Listening, Learning, and Acting. I am certain that your discussion was greatly appreciated by the over 320 who attended on June 15th to learn about issues related to Cultivating Accessible Educational Pathways and Spaces.

Your expertise and insights were invaluable, and we are so grateful for the time and effort that you put into preparing and delivering your remarks. 

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Media Mention

 

The need for global solutions. Disability is not an american phenomena.

ASSERT ECHO @Vandy

I have been a participant in the Assert (All Stakeholders Engage in Research Together) project this semester, run by Prof Beth Malow's Sleep Lab.  https://www.vumc.org/sleep-in-autism/assert-resources

Its been a good experience, listening to everyone's perspective and being able to contribute, though I could not make last few sessions as it clashed with the new meetings at my new lab rotation.

The disability rights mantra has long centered around Nothing about us without us. And I am glad that to see this idea trickling down with respect to research which will (hopefully) lead us to solutions. And this effort is at happening at many places now - at universities and research centers. 

If you are an autistic, please do consider getting involved by emailing assert@vumc.org. It is important that our voices are heard. 

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. 

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."

Read on at https://www.oaklandairport.com/mural-exhibit-featuring-disabled-artists-and-disability-rights-activists-hung-at-the-oakland-airport/

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.

Hybrid is an easy accommodation

To give context to the above post, Sascha was one of the students in my Autism DeCal Class at UC Berkeley. I was happy to be able to accommodate her request of attending the class remotely that semester and extending that hybrid option to all the students in the class as well. Hybrid is such a simple and basic accommodation really, especially in a post pandemic world where zoom became a very viable option of attendance. 

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And to hark back to another teacher who paved this way for me was Instructor Martha Oral (English 1B) in my community college when I was about to drop my fall semester as I would be unable to attend due to health reasons. Martha on her own initiative talked to the Tech support and organized Cisco Webex on her laptop which one student monitored during her class so that i could attend that class remotely. This was before the pandemic made Zoom an everyday word. 

 

Boston Globe Op-Ed

https://www.bostonglobe.com/2023/04/22/opinion/autism-disability-person-first-language-identity-first-language-linguistics/

My first op-ed in a major media newspaper on an issue that still seems to dominate autism conversations. its time to put it to rest and move onto spending time on translatable solutions for all autistics.

The article discusses the linguistic controversy surrounding the use of identity-first language (e.g., "autistic") and person-first language (e.g., "person with autism"). I argue that the autism community can learn from other disability communities and embrace both types of language. The key takeaway is that it is not an either-or situation, and that the most important thing is to use language with empathy and respect.

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.

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.

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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.

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.

This is 2023. Why are shocks still part of Autistic Behavior Therapy?

This is 2023: Shocks are being used on autistics as part of ABA Therapy. The UN calls it "torture". Read this article by Eric Garcia in the Boston Globe. 

https://www.bostonglobe.com/2023/01/30/opinion/will-shock-treatment-finally-be-banned/

1965: The images show a Photo Essay that appeared in the 1965 issue of Life Magazine about ABA therapy being done on Autistic Kids with Dr Loovas. Shocks were used as aversives -  the floor is laced with metal strips and the autistic girl in the picture is barefooted.  

Moser, D., & Grant, A. (1965). Screams, slaps & love: A surprising, shocking treatment helps far-gone mental cripples. Life Magazine, 90-102

A link to the full article is at  https://cpb-us-e1.wpmucdn.com/blogs.uoregon.edu/dist/d/16656/files/2018/11/Screams-Slaps-and-Love-Life-Magazine-13javg3.pdf 

46th anniversary of 504 sit-in

46 years ago, Apr 5, 1977 was the start of the longest sit-in in US history. 

On April 28, 1977, Secretary Joseph Califano signed the regulations.

"Without 504 — there might well be no Americans with Disabilities Act, that finally brought us up to parity with federal civil rights laws covering gender and race."

https://dredf.org/504-sit-in-20th-anniversary/short-history-of-the-504-sit-in/
 

The Ugly face of Ugly Laws

The Ugly Laws, also known as the unsightly beggar ordinances, were a series of laws that were enforced in the United States and other countries in the late 19th and early 20th centuries.

These laws criminalized people with disabilities, deformities, or any physical characteristic that was deemed "unsightly" or "disgusting" in public spaces.

The origins of the Ugly Laws can be traced back to the mid-19th century when cities began to grow rapidly, and industrialization led to an increase in poverty and homelessness. In response to these societal changes, city officials sought to regulate public spaces, including streets and sidewalks, and restrict the presence of certain groups of people, including disabled folks.

The first Ugly Law was enacted in San Francisco in 1867, and similar laws were subsequently passed in other cities, including Chicago, New York, and Denver.  

The punishment under the Ugly Laws varied depending on the specific city or state in which the law was enforced. However, common forms of punishment included fines, imprisonment, or forced institutionalization in a hospital or asylum.

So the disabled could be arrested simply for appearing in public spaces, including streets, sidewalks, and public buildings. In some cases, police officers or other authorities would use their own discretion in determining who should be arrested or fined, based on their personal biases or prejudices.The Ugly Laws were often enforced without regard for the civil rights or dignity of the disabled, and many people who were arrested or institutionalized under these laws experienced great hardship and abuse.

The Ugly Laws were justified under the guise of public health and safety, with proponents claiming that people with disabilities were a threat to public health and morality. However, the laws were also a means of social control and discrimination against the disabled, who were seen as undesirable and unworthy of inclusion in public life.

The Ugly Laws persisted until the mid-20th century, when disability rights activists began to challenge these discriminatory practices. Disability rights groups, including the League of the Physically Handicapped and the National Association of the Deaf, organized protests and legal challenges to the Ugly Laws, arguing that they violated the civil rights of the disabled.

The Ugly Laws were repealed at different times in different states and cities, and it's unclear which state was the last to repeal them. However, it's known that the Ugly Laws were still in effect in some cities as late as the 1970s.


For example, in Chicago, the Ugly Laws were repealed in 1974 after years of activism by disability rights advocates, including a high-profile protest in which activists chained themselves to buses to draw attention to the issue. In Omaha, Nebraska, the Ugly Law was repealed in 1974, after a lawsuit was filed on behalf of a man with cerebral palsy who was arrested for appearing in public.

In many cases, the repeal of the Ugly Laws was not the result of a single event or action but rather a gradual shift in attitudes towards the disabled and a growing recognition of their civil rights. Today, while the Ugly Laws are no longer enforced, people with disabilities continue to face discrimination and barriers to full participation in society. Disability rights advocates work to challenge ableism and promote greater inclusion and accessibility for all.

(Written Oct '21)

References

Baynton, D. C. (2001). Disability and the justification of inequality in American history. In P. K. Longmore & L. Umansky (Eds.), The New Disability History: American Perspectives (pp. 33-57). New York: NYU Press.

Kudlick, C. (2003). Reflections on freaks. In M. Corker & T. Shakespeare (Eds.), Disability/Postmodernity: Embodying Disability Theory (pp. 33-47). London: Continuum.

McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York: NYU Press.

Norton, R. (2016). Ugly laws: Disability in public. New York: NYU Press.

"The 'Ugly Laws': When Being Disabled Was A Crime" (NPR, 2014): https://www.npr.org/2014/12/18/371437472/the-ugly-laws-when-being-disabled-was-a-crime

"Chicago's Ugly Laws Repealed: A Look Back" (Chicago Tribune, 2014): https://www.chicagotribune.com/news/ct-ugly-laws-chicago-history-flashback-20141020-story.html

"The Law That Made It Legal to Ban People With Disabilities From Restaurants" (Smithsonian Magazine, 2017): https://www.smithsonianmag.com/history/law-made-it-legal-ban-people-with-disabilities-restaurants-180962121/

Troubling Ableism in Neurodiversity

Written Oct 13 22. Still ironically relevant. 

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Troubling Ableism in Neurodiversity

Is Neurodiversity an Exclusion Club?

JUST HEARTBREAKING AND DISAPPOINTING

 

The Thursday morning Plenary Session of the College Autism Summit was an employer panel of companies hiring neurodiverse employees. The dictionary (dictionary.com) defines "plenary" as the most important session of the day "attended by all participants in a conference." ie: some impactful words of wisdom were expected. But...

These are remarks by a neurodivergent panelist who works for one of these large hiring companies. 

1. Most jobs hiring neurodiverse are in tech

2. Neurodiverse employment target "low-no" support-needs

3. Suggestion by this person as to what to do with the rest, the higher support neurodiverse:                 "Have companies ask their janitorial vendors to hire."

What was disillusioning - the comment was by a neurodiverse panelist on this employer panel. 

SERIOUSLY!!  An "othering" of remaining autistics.  So these "other" autistics, the moderate-high support needs autistics are only fit to be the cleaning crew!!

The irony in the choice of profession mentioned by the panelist is not lost on me. It's not that janitorial jobs have less dignity (all professions deserve dignity and respect) - but it's the idea of furthering the invisibility of this 'other' group . For instance, don't many cleaning crews usually work after the offices close for the day - out of sight of the public eye; a reminder of the UGLY LAWS (1867-1974) where disabled were fined/arrested for being seen in public as they were “visual disturbances.” (I remember being absolutely shocked and horrified when I had first learned of the existence of these laws in my first Disability Studies class at UC Berkeley with Prof Victor Pineda. Even cities were planned, such that “institutions” housing the disabled, were placed at the very outskirts of the city)

As it is, many many of the autistics peers I have grown up with (in the 'other' group) in my special education classrooms are disappearing into the black hole of day care programs/ group homes /institutions as adults, where they can be out of sight for the majority of society, even as families are struggling to support those individuals. Out of sight, out of mind, is a clean solution for society, as nothing more need to be done. In the meantime, they struggle in systems that trap them in the cycle of dependency, neglect and poverty due to inadequate services, supports and opportunities.

In the meantime, neurodiversity employment per this person is essentially an exclusive club where 'club members' will ask for rights derived from the long-fought-for Disability Rights Movement - that there must be employer cultural change where "low-no" are accepted, accommodated, advanced, given access to higher paying jobs, a chance at upward mobility, given a voice; even as they shut that avenue to other fellow disabled with a dismissive wave of - you are not good enough to join us, fit only for low wage jobs. A throwback to how disabled were viewed before the Disability Rights Movement. 

Isn't this imposing the very ABLEISM you are fighting the neurotypical world for?

Duplicity. Shame on you!'

With all sarcasm intended, the suggestion of "companies have their janitorial vendors hire," these 'other' autistics would  be a neatly packaged solution - corporate social responsibility accomplished as all autistics are now employed!! 

The new employment solution given for these 'other' autistics during this National Disability Employment month, apparently is not just LOW-WAGE but also preferably rendered INVISIBLE. 

If this is what the neurodiversity movement amounts to, then the whole idea of neurodiversity is a disillusioning sham. It's promoting exclusion, not inclusion. It's not upholding the disability rights mantra of "Nothing about us without us" or the Sins Valid Disability Justice principle of "Leadership of the Most Impacted" ie: there is no Disability Justice unless there is justice for the most marginalized. 

JUST DISILLUSIONING AND DISAPPOINTING

It's like being invited into the neurodiversity dining room cuz bad public image to leave you standing at the door. But once inside, you find you are not really at the main table with good food but the plan was to redirect you to the side table with scraps. Outside the dining room, society thinks the entire neurodiverse community has been fed.

So I have to ask what is the difference between other groups asking for a separate label/room and the neurodiversity community creating the same hierarchy inside the dining room.

 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST

No wonder service organizations like the Department of Rehabilitation are reluctant to support the college aspirations of these "other” autistics; why encourage college if the end goal for them is a minimum wage job at best. And even before that in the special education pipeline, a majority of 'other' autistics in special education are pushed towards the non-diploma track at the middle school age itself (never mind their personal goals that may be otherwise). 

Acceptance and inclusion to education and well-paying jobs is not just the right of some autistics/ neurodiverse, it must be for ALL. This is not why 8-year old Jennifer Keelan along with many others pulled themselves up the steps of Capitol Hill before the Americans with Disabilities Act was passed in 1990. This is not why 150 disabled people occupied the HHS offices at a San Francisco federal building for 28 days (the longest sit-in in US history) to get Section 504 passed. 

If the "remaining autistics" (the ones without privilege) don't get acceptance from our own autistic/neurodiverse community in the spaces they want to be in, how can we begin to expect acceptance and inclusion and belonging from the wider neurotypical community? 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST

Regarding the first points 1 and 2, I can still take it as a work in progress. We are still figuring out the how's

• Tech jobs are a START and I saw awareness of the need at various sessions of the conference to push autistic employment into non-tech fields. At least people are thinking about this. 

• The fact that companies are starting with  autistics perceived to be easier to support, can again be thought of as a START that we can build on - but by no means does it end with one subgroup. 

• It's ok to say we don't have all the solutions now. At least leave this door open so that we can continue to think on the hows. 

I will draw a parallel to scientific research to illustrate. We don't have all the explanations currently but we keep chipping away and will slowly unearth solutions. At times it's about arriving at the correct question and also the methods and evolution of available technology. But science and tech has kept pushing those frontiers. 

Likewise in autism research, most current research/tech looks at testable autistics -  which at least gives us a broad overview of issues. But we cannot stop there - for the next step we need to dig deeper at physiological level so we get to what's going on so we can find ways to better support everyone including these "other" autistics. 

Please be part of the solution and not part of the problem. 

For instance if we make headway in 

• Sensory areas (understanding at a physiological level to better support with tech or other solutions) 

• Communication piece (think  BCI that can bypass motor and sensory systems, more affordable intuitive AAC…) 

• Technology supports, that simplifies motor tasks/ executive planning around daily living skills (think robot helpers, self-driving cars, hybrid employment, more intuitive tech…)

• Translational precision medicine for underlying health issues and co-occurring conditions (in place of current diagnostic overshadowing).  

• Development of better meds to help with mental health needs, self-injurious behaviors, obsessive compulsive behaviors etc. Instead all we have is Big Pharma recycling/ rebranding drugs dating back to the 1950s. I was shocked to learn in my undergrad "Drugs and the Brain" class at UC Berkeley that even a minor tweak in just one branch of a drug's chemical structure allows for re-patenting which means continuation of the exorbitant high prices/profits. Did you know that ~30-40% of autistics are on medication for behaviors (Logan et al., 2012)?  I once also heard Dr Antonio Hardan of Stanford mention at the Stanford Autism Conference that these behavior drugs don't work the same way in autistics as in the general population - so why are we still over medicated with these same drugs.  

• empathic equitable policies

• ... more

Think then (with just this far-from-exhaustive list) of the incredible inclusion we can have of the entire spectrum of autistics in society, in higher education and in the workplace. What a huge improvement in quality of life that would be, not just for the autistics, but also for the world. 

I see policy, legislation, research, healthcare and societal mindsets as varying angles of the very same disability rights movement. 

I also have to wonder how much of a role negative media representation of these ‘other’ autistics plays in exclusionary practices by both society and segments of the neurodiverse community itself, especially if media continually shows you mainly in the context of meltdowns, or in other words as “visual disturbances” (Ugly Laws) that better be tucked out of sight. 

Worth does not have to be defined by how productive you are seen to be or how much you can contribute to the economy. But I am hopeful ALL AUTISTICS (the ones who aspire to higher education and aspire to work) will get to higher education and WORK at the job they want to work at. That some don't have to "settle" or be "steered" towards minimum-wage type work because society (which apparently also includes a segment of fellow neurodiverse individuals) think your life has less worth than theirs. 

Though we may not have all the solutions and are still working on the "How",
the message I want to send to ALL autistics is:

ALL does not mean SOME. 

ALL autistics have the right to any benefits/policies derived from the hard-won-struggles of the disability rights movement. 

ALL autistics have the right to access supports, and to spaces and opportunities you aspire to

ALL autistics have the right to Belong.

ALL autistics have Worth. 

(PS: The better parts of the CAN conf are in this post.)

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. 

If you don't demand, you are not going to get it.

Remembering the late Judy Heumann

 

Making a Fuss about it.

Remembering the late Judy Heumann

 

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/