The Daily Cal's Disability Impact Special Issue

The Daily Cal came out with A Disability Impact Special (23 articles). A tribute to 30 Years of ADA. 

I have been pushing for such an issue for a few months now. I was able to give input on what the front art cover should look like. Its black and white images of the disability rights movement overlaid with the modern face of disability in color; color in more ways that one - different races, different disabilities, visible and invisible disabilities. 

Check it out https://www.dailycal.org/section/special/30-years-of-ada-2020/ 

Other articles in the issue by me are 

https://www.dailycal.org/2020/10/23/born-into-the-ada/ 

https://www.dailycal.org/2020/10/23/disability-higher-education/

https://www.dailycal.org/2020/10/22/superfest-disability-film-festival-highlights-blackness-blindness-impact-of-audio-description-services/ 

Handicapped

The term "handicapped" originated in the 17th century as a gambling term. The phrase "hand in cap" referred to a game in which one person would claim an item belonging to another and offer something in exchange. An umpire would then decide on the value difference between the items, and all three players would deposit forfeit money into a cap. The two opponents would indicate their agreement or disagreement with the valuation by revealing whether their hands were full or empty. If their hands matched, the umpire would take the forfeit money, but if not, it would go to the person who accepted the valuation. 

Later, in the late 18th century, the term "handicap race" was used in horse racing, in which an umpire would decide on the weight to be carried by each horse, and the owners would indicate acceptance or dissent in a similar manner. As a result, in the late 19th century, the term "handicap" came to mean the extra weight given to the superior horse.

The term "handicapped" came to mean disability in the early 20th century when it was used to describe people with physical impairments who faced barriers in participating fully in society. The word "handicap" was used in this context because people with disabilities were seen as being "handicapped" or disadvantaged by their impairments, which made it more difficult for them to participate in daily life activities.

In some contexts, the word handicapped has been associated with begging (cap in hand) due to the historical practice of people with disabilities being forced to beg for a living. This practice was prevalent in some parts of the world before the development of social welfare programs and disability rights movements. People with disabilities often had few options for employment and were forced to rely on begging as a means of survival.

In the early 20th century, the term "handicapped" was widely used in the United States and other English-speaking countries to refer to people with disabilities. However, in the latter half of the 20th century, the term began to be seen as derogatory and offensive, as it emphasized the person's disability rather than their abilities.

Intro to Disability Studies

With Prof Marsha Saxton, Introduction to Disability Studies

Group Presentation by our team on the book "Deaf in Delhi" for the Class" 

The DSP asks for proof of purchase in order to provide the textbook in an alternative format (pdf in my case). I did not have a receipt so sent a photo instead of the 2 textbooks. Worked!!

Collaboration Cooperation - An interview with Disability Rights Activist Judy Heumann

https://www.dailycal.org/2019/11/26/a-conversation-with-disability-rights-activist-judith-heumann/

As Heumann points out, while change itself may take time, we cannot accept "no" in the meantime and need to be pushing as hard as possible when fighting for our rights. 

It was an honor and privilege to interview UC Berkeley alumna and disability civil rights activist Judy Heumann about the pressing issues of the day and her life of phenomenal work in this field. We could not get to everything of course (there is just too much) so just zoomed in on her Bay Area years. Judy also provided strategies and tips for the current-gen of students and their allies. The key, as she explains in so many different ways, is a phrase I absolutely love - "Collaboration Cooperation."

I was hard-pressed as to what to include (vs leave out) in the 2000 word limit article. She had so much to say.

I am so much in awe because as mentioned in the article, the reason students with "more significant disabilities" (like me) are going to college really is because of the groundbreaking path laid by leaders like Judy in making legislation like IDEA (Individuals with Disabilities Ed Act) a reality. She totally and accurately points out that it shows ADA and IDEA at work.

Judy actually asked me during the interview if I felt I benefitted from IDEA and was rather amused at my "yes and no" response. The conflicts over my school district expectations of me did rather mess up my elementary & middle school years (& hence the qualifier).

But Just Think - before IDEA's 1975 precursor (Education for All Handicapped Children Act) came along (thanks to folks like Judy), most of us would not be allowed in public schools at all.

Without all the accommodations legislated by laws that let me access mainstream education, I could not be studying at Berkeley today.

The Ugly History of Disability Eugenics in the US

The eugenics movement emerged in the late 19th century in both the United States and Europe, and aimed to improve the genetic quality of the human population by promoting selective breeding and limiting the reproduction of those deemed "unfit" or "undesirable." The eugenics movement was strongly influenced by social Darwinism, a belief that human society should be structured based on principles of natural selection and survival of the fittest.

The first state to pass eugenic sterilization laws in the United States was Indiana in 1907, and by 1931, over 30 states had passed similar laws. These laws authorized the forced sterilization of individuals deemed "unfit" to reproduce, including people with disabilities, mental illness, and other conditions considered hereditary.

The procedures involved in eugenic sterilization varied, but commonly included surgical sterilization of women (tubal ligation) and men (vasectomy), as well as the use of X-rays or radiation to sterilize women. These procedures were often performed without the informed consent of the individual, and many people with disabilities were sterilized against their will.

In addition to sterilization, the eugenics movement also promoted the institutionalization and segregation of the disabled and other "undesirable" groups, as well as the promotion of restrictive immigration policies to limit the number of people considered "unfit" entering the country.

The eugenics movement in the United States began to decline in popularity after World War II, due in part to the association of eugenics of the Holocaust. In the 1960s and 1970s, disability advocacy groups began to challenge eugenic practices and call for greater rights and inclusions.

Forced sterilization of people with disabilities continued in some states in the United States until as recently as the 1980s, and many people with disabilities still live with the long-term effects of eugenic policies, including forced institutionalization and exclusion from mainstream society. Today, the legacy of eugenics continues to shape the way that people with disabilities are perceived and treated in society.

Also see posts on [Feeble-Minded] [Imbecile] 

Universal ReDesign

Universal ReDesign Group Presentation for my Comm Planning and Public Policy for Disability Class today.

Our presentation was very well received. We tackled the state of the city of Berkeley's street infrastructure. Our proposed solution was a three-pronged approach looking at it in terms of Physical (Built environment), Social (Changing attitudes/awareness) and Institutional (Policy/funding). Especially loved the visuals of the environment redesign by the design architects in our group.

And of course the increasing number of kiwibots and the obstacles they present were very much part of our discussion. Have you noticed that they park on the curb cut itself before crossing the street and thus potentially block a wheelchair user.

with Josh Lavine Anna Whitney Vincent Dharma Darren Pirono Rudi Skowronsk,  Victor Pineda — at Wurster Hall, UC Berkeley

Dr Victor Pineda

End of an amazing semester with Professor Victor Pineda for my Comm Planning and Public Policy for Disability course.

Oh wow, his class is an experience! Growing up, you are only exposed to a little slice of your world of disability and your specific disability. This semester really opened my eyes to thinking about the bigger picture and issues up to a global scale and implementation at grassroots level.

I now also have a totally new level of respect for those yellow tactile curb cuts on the crosswalks, and the multitude of ways we interact with our built environment, the mismatches, inclusive design and universal design.

Appreciate it all the more as I am one of those PWD (person with disability) and being taught by a PWD who helped write the UNCRPD. The whole disability movement rests on the core principle of "Nihil de nobis, sine nobis" - “Nothing about us without us.” A big driving force behind my desire for higher education is to earn a seat at the table.

Lots of progress has been made but still much to be done. Hope I get to be in the thick of that change for the better.

Mental-Cripple

The term "mental cripple" has been used historically as a derogatory term to refer to people with intellectual or cognitive disabilities, and was often used in a way that reinforced negative stereotypes and discrimination against this population.

The term mental-cripple was used to refer to autistics as seen in this 1965 nice-page photo essay in Life Magazine featuring Dr Ivar Loovas and ABA therapy. 

The R-Word

The use of the R-word slur ("retard") to refer to people with intellectual disabilities has a long and complex history. The term "retard" is derived from the word "retarded," which was originally used as a medical term in the late 19th century to describe individuals with intellectual disabilities.

However, the R-word quickly became a pejorative and was used to demean and dehumanize people with intellectual disabilities. The use of the R-word as an insult became more widespread in the mid-20th century, particularly in the United States, as it became more common to institutionalize people with disabilities.

Throughout much of the 20th century, the R-word was used in official language, such as in medical diagnoses and educational assessments. However, in recent years, there has been a shift towards using more respectful and person-centered language to refer to people with disabilities.

Many disability advocacy groups have worked to raise awareness about the harmful effects of using slurs like the R-word and as a result, there has been a decline in the use of the term in mainstream culture. In 2010, President Barack Obama signed "Rosa's Law," which replaced the term "mental retardation" with "intellectual disability" in federal health, education, and labor policy.

Despite these changes, the use of the derogatory R-word still persists in some communities and can have a harmful impact on people with intellectual disabilities and their families. 

The Feeble Minded

The term "feeble-minded" was commonly used in the United States and Europe in the late 19th and early 20th centuries to describe individuals who were perceived to have intellectual disabilities, developmental disabilities, or mental illnesses. The term was intended to be a catch-all phrase for a variety of conditions that were poorly understood at the time, and was often used to refer to people who were deemed socially or morally "undesirable".

The use of the term "feeble-minded" was deeply stigmatizing and contributed to the marginalization and oppression of disabled people. The term was often used to justify forced institutionalization, sterilization, and other forms of eugenic control over disabled people, as well as to deny them basic human rights such as education, employment, and the right to marry.

In the United States, the term "feeble-minded" was used in the landmark 1927 Supreme Court case Buck v. Bell, in which the Court upheld the constitutionality of forced sterilization of individuals deemed "feeble-minded" and "unfit" to reproduce. The decision gave legal justification for the widespread practice of eugenics, which resulted in the forced sterilization of tens of thousands of people in the US and Europe.

The consequences of the use of the term "feeble-minded" were devastating for disabled people and their families. Many were subjected to forced institutionalization, where they suffered from abuse, neglect, and social isolation. Others were sterilized against their will, which had lasting effects on their physical and mental health, as well as their ability to have children.

The term "feeble-minded" 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 "feeble-minded" is generally considered outdated and offensive.

Lives Worth Living

Lecture 1 of my first Disability Studies Class at UC Berkeley with Prof Victor Pineda. 

CYPLAN 120 Community Planning and Public Policy for Disability

We got to see the movie "Lives Worth Living"

Impressions: 

I am thrilled that there were so many front-runners who have eased the path for disabled individuals like me by making ADA possible. The movie was very powerful and moving.

The disability rights movement was inspired by the civil rights and gender equality movements and drew on many of their tactics, especially that of civil disobedience.
The sit-in in the rotunda was a masterful stroke, and more so tying themselves to their wheelchairs and to each other, so as to prevent forcible removal. It is definitely not easy for a cop to lift both a person and a heavy motorized wheelchair. I can imagine that the image of disabled individuals dragging themselves up the steps did not sit well with lawmakers, especially since it was televised and drew the attention of a national audience.


No laws get passed without the support of lawmakers and in a way it was fortunate that the Kennedy family had a personal stake in the issue along with a few other well-wishing lawmakers. Robert Kennedy was able to end large institutions by exposing the appalling practices at places like Willowbrook in NY. Though he had not intended to, President G.W Bush ended up being a proponent of the movement and declaring, “let the wall of exclusion come tumbling down.”


I liked the movement’s clear message of, “nothing about us without us,” and that the change had to happen “now.” For too long, the non-disabled had decided what was best for the disabled, a very paternalistic attitude. A non-deaf president of Gallaudet University for the deaf was forced to step down, which added momentum to the movement. Incidentally, the director of Disability Services at San Jose City College is deaf.


Early on, the disabled had realized that there was strength in numbers and came together as a community instead of each disability acting for its particular interests. Clearly, as a very large group, their tireless efforts did help get laws passed.


Since the movie laws like IDEA have passed which has addressed both physical and intellectual access. The disability movement which started with physical disabilities grew to include developmental, intellectual and other forms of disabilities.


However, implementation of the law is still lax and societal attitudes have not caught up. I have experienced a pervasive culture of low expectations by special educators and a reluctance to mainstream despite the underlying principles of LRE and FAPE in IDEA. In high scoring districts like those in south bay, the reluctance is also fueled by parents of typical kids who do not want their high-achieving, kid’s education to be distracted by the presence of disabled kids in the classroom. The result is the large numbers or special education classrooms rather than mainstreaming a great majority of those kids. It ends up limiting their opportunities in life.


I have been fortunate that Cal is such an accepting place. I wonder about my life after Cal, would ADA give enough protections or would I be presumed incompetent or an economic burden yet again.

Role of Disability in Society

 

CyPlan 120 Community Planning and Public Policy for Disability

Group Presentation in Wurster Hall
Instructor: Dr Victor Pineda


Reflection: The Role of Disability in Society by Jaeger

The author emphasizes that disability is a social construct, which makes its impact all the more significant. This social construct can be seen in terminology that reflects societal attitudes and changes. Disability is often the master status that defines the individual. I am uniquely Hari who also happens to have Autism. Autism should not be the sum total of who I am.

This master status impacts the way the disabled are treated. It reinforces stereotypes, exclusion, oppression, hostility, feigned concern, over-romanticism, sentimentality, indifference, and marginalization. It presumes incompetence in the workplace or some kind of economic burden on the employer. Even with laws like ADA in place, only 25% of the disabled are employed. The unemployment rate is 70% compared to 5% in the non-disabled population.

An irony is that many typical people are willing to support equal rights for minority groups based on race, gender, sexual orientation etc. Yet there is social distancing when it comes to disability. Disability is seen as distressing with varying levels of reactions depending on the nature of the disability.  

When enough people in a society try to classify a set of people they come up with ways to exclude them socially and legally. Even the founding fathers thought we disabled just needed to be taken care of. The supreme court has time and again, taken a narrow interpretation of disability protection laws even as they have allowed for a broad interpretation in other laws.

The disabled need to be part of the decisions made about them, both individually and as a group. Historically this has not been so. Even media images are guided by non-disabled people. The 7 negative stereotypes about the disabled that continue to perpetuate in the media are -  pitiful and pathetic; supercrip; sinister, evil, and criminal; better off dead; maladjusted and their own worst enemy; burden; and unable to live a successful life.

The world is built to cater to the needs of the abled perspective. They have no idea of the everyday challenges of the disabled in trying to navigate this environment. The social perspective sees disability as the result of an unsuitable environment, a kind of Disablism. Hence the need for social justice. If the environment is changed through laws and social norms, the disability lessens.

The idea of access is both physical and intellectual. Physical access is the architectural access along with a dose of dignity. A wheelchair user should not have to use a separate ramp or elevator at the back of the building. The spatial aspects of enablement in Pineda’s article could well be fulfilled by the planned cities envisioned by Le Corbusier which Alexander is so critical of in his article. On the flip side, the compartmentalized nature of a tree city could end up with some inadvertent segregation as well.

Intellectual access requires clarity and organization in the way information is presented. Education and Information is power in a democracy and the disabled need equal access to it. They need equal opportunity to understand the content.  Technology itself is both a blessing and a problem. It’s hard to keep up with changing technology and the smaller screen sizes do make things more challenging.

Disability is growing and a worldwide issue. The author cites the number at 550 million, only 15% disabled at birth. Ironically the US is the country that provides most rights. Some countries even restrict access. Australia has turned away immigrant families who have disabled kids. The parents were welcome but not the disabled kid.

Though we have made progress in disability laws, the implementation is lax. For example,  a core principle of Individuals with Disabilities Education Act is that a student should be removed from general education only if his disability is so severe as to impact his educational needs. Yet time and again my school district refused to mainstream me. Their nod to compliance with the law was to allow me in the same playground as other children during recess. Somehow by magical osmosis, I was supposed to pick up skills from them.

As a disabled individual, I am thrilled that we have laws. But unless social attitudes shift, we are not going to see meaningful change. At the end of the day, all of us, whether abled or disabled, have a common goal, to be a meaningful and productive member of society.

Disability in Society

A presentation for my Community Planning and Public Policy for Disabilities Class in Wurster Hall.

Reflection: The Role of Disability in Society by Jaeger

The author emphasizes that disability is a social construct, which makes its impact all the more significant. This social construct can be seen in terminology that reflects societal attitudes and changes. Disability is often the master status that defines the individual. I am uniquely Hari who also happens to have Autism. Autism should not be the sum total of who I am.

This master status impacts the way the disabled are treated. It reinforces stereotypes, exclusion, oppression, hostility, feigned concern, over-romanticism, sentimentality, indifference, and marginalization. It presumes incompetence in the workplace or some kind of economic burden on the employer. Even with laws like ADA in place, only 25% of the disabled are employed. The unemployment rate is 70% compared to 5% in the non-disabled population.

An irony is that many typical people are willing to support equal rights for minority groups based on race, gender, sexual orientation etc. Yet there is social distancing when it comes to disability. Disability is seen as distressing with varying levels of reactions depending on the nature of the disability.

When enough people in a society try to classify a set of people they come up with ways to exclude them socially and legally. Even the founding fathers thought we disabled just needed to be taken care of. The supreme court has time and again, taken a narrow interpretation of disability protection laws even as they have allowed for a broad interpretation in other laws.

The disabled need to be part of the decisions made about them, both individually and as a group. Historically this has not been so. Even media images are guided by non-disabled people. The 7 negative stereotypes about the disabled that continue to perpetuate in the media are - pitiful and pathetic; supercrip; sinister, evil, and criminal; better off dead; maladjusted and their own worst enemy; burden; and unable to live a successful life.

The world is built to cater to the needs of the abled perspective. They have no idea of the everyday challenges of the disabled in trying to navigate this environment. The social perspective sees disability as the result of an unsuitable environment, a kind of Disablism. Hence the need for social justice. If the environment is changed through laws and social norms, the disability lessens.

The idea of access is both physical and intellectual. Physical access is the architectural access along with a dose of dignity. A wheelchair user should not have to use a separate ramp or elevator at the back of the building. The spatial aspects of enablement in Pineda’s article could well be fulfilled by the planned cities envisioned by Le Corbusier which Alexander is so critical of in his article. On the flip side, the compartmentalized nature of a tree city could end up with some inadvertent segregation as well.

Intellectual access requires clarity and organization in the way information is presented. Education and Information is power in a democracy and the disabled need equal access to it. They need equal opportunity to understand the content. Technology itself is both a blessing and a problem. It’s hard to keep up with changing technology and the smaller screen sizes do make things more challenging.

Disability is growing and a worldwide issue. The author cites the number at 550 million, only 15% disabled at birth. Ironically the US is the country that provides most rights. Some countries even restrict access. Australia has turned away immigrant families who have disabled kids. The parents were welcome but not the disabled kid.


Though we have made progress in disability laws, the implementation is lax. For example, a core principle of Individuals with Disabilities Education Act is that a student should be removed from general education only if his disability is so severe as to impact his educational needs. Yet time and again my school district refused to mainstream me. Their nod to compliance with the law was to allow me in the same playground as other children during recess. Somehow by magical osmosis, I was supposed to pick up skills from them.


As a disabled individual, I am thrilled that we have laws. But unless social attitudes shift, we are not going to see meaningful change. At the end of the day, all of us, whether abled or disabled, have a common goal, to be a meaningful and productive member of society.