Health Care Considerations

April is Autism Solutions Month. 

Some Healthcare Considerations

Autistic and other high-support disabled people often need full sedation to access procedures like regular dental care, yet such procedures are rarely covered by insurance—which means people aren't getting the care they need, says @HariSri108.

Another medical care consideration from @HariSri108 is that often autistic people cannot tolerate the sight of medical implements like syringes. Providers can take simple steps like covering implements with towels until they are actually used.





Kindness is the fuel that ignites the fire of hope

Small acts of kindness can make big differences in someone's life

 

Media Mention

April is Autism Solutions Month.

Thank you Eric for the kind words. 



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)
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Plain Language Version

The Ugly Laws: A Shameful Part of History

The Ugly Laws, also known as the "unsightly beggar ordinances," were laws in the United States and other countries during the late 1800s and early 1900s. These laws made it illegal for people with disabilities or any physical differences to be seen in public during the daytime.

Why They Were Made

In the mid-1800s, cities grew quickly, and there was more poverty and homelessness because of industrialization. City officials wanted to clean up the streets and decided to keep people with disabilities out of public spaces.

Where They Were Enforced

  • First Law: The first Ugly Law was passed in San Francisco in 1867.
  • Other Cities: Similar laws were made in places like Chicago, New York, and Denver.

What the Laws Did

These laws allowed the police to arrest, fine, or send to institutions people who were considered "unsightly" just for being in public places like streets and buildings. The decisions were often based on the personal biases of the officers.

Justifications and Reality

The Ugly Laws were said to be for public health and safety, but they were really about controlling and discriminating against people with disabilities. These laws treated disabled people as if they were a threat or unwanted in society.

End of the Ugly Laws

  • Disability Rights Movement: In the mid-1900s, disability rights activists started fighting against these unfair laws.
  • Protests and Legal Actions: Groups like the League of the Physically Handicapped and the National Association of the Deaf protested and challenged the laws in court.
  • Repeal: The laws were repealed at different times in different places, but some were still in effect until the 1970s.

Examples of Repeal

  • Chicago: Repealed in 1974 after protests, including activists chaining themselves to buses.
  • Omaha, Nebraska: Repealed in 1974 after a lawsuit for a man with cerebral palsy who was arrested for being in public.

Ongoing Issues

Even though the Ugly Laws are no longer in place, people with disabilities still face discrimination today. Disability rights advocates continue to work for greater inclusion and accessibility for all.


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/


Joy is the feeling of being alive in the present moment.


 

Contemplation, one line a Day. 


Be kind. It costs nothing and means everything

Curious Incident of Dog in Nightime

LASR lab outing today to see the Curious Incident of the Dog in Nighttime at TPAC. 

Protagonist is a Brit autistic teen. The first half was a little emotionally tense and bit upsetting, was almost going to leave during intermission. Second half led to good ending though. 




Lets critique Media Representation of Autism -  since the character is autistic


 

An optimistic mindset allows us to see challenges as opportunities for growth.


Kindness is the easiest currency to spread around

Not enough months to go around.

12 months are not enough to go around to acknowledge everything out there. 
I found out April is not just for Autism but also Poetry Month and also Community College Month.

Yeah for both the latter as well. 

Community Colleges are such wonderful places for autistics, offering college level course and college level expectations in a smaller, easier to handle environment. 

And I love poetry. 

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.)

Autism Solutions Month


We are way beyond talk of Awareness, way beyond talk of Acceptance, way beyond talk of Inclusion

We need TRANSLATABLE SOLUTIONS that actually assists us.

And we need it now. 

I'm calling April,  AUTISM SOLUTIONS MONTH