By Liza Citron

Approximately 26 percent (61 million people) of adults living in the United States are disabled (Centers for Disease Control, 2020). If this is the case, many may wonder why we don’t see more disabled people in our communities. The answer? We see disabled people, likely every day, for something as mundane as a walk down the street. We just don’t see as much evidence as we might expect. Why?

Without accounting for social and economic factors, the most straightforward answer is that many of these disabled individuals are living with an invisible disability. Invisible disability is defined as “a … condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities.” (Invisible Disabilities Association, 2021)

For example, I (Liza Citron, author) have a changeable, day-to-day mobility level. I am also autistic. I can be seen with anything from a wheelchair to no mobility aid at all. However, no matter what I am (or am not) using, I am still mobility disabled. Suppose I park in an accessible parking spot because I have a need to, but I am not using a wheelchair. In that case, I still have that need, perhaps because my walking ability is limited. Autism is often an invisible disability for me as well. You can’t necessarily see the overstimulation or the lengths I must go to in order to understand neurotypical behavior.

Deafness, blindness, developmental disability, and neurological disabilities can be invisible or visible, depending on the accommodations needed, the person, or the environment and day. So can ADHD, dyslexia, dyscalculia, many other learning disabilities or even mental illness such as depression and anxiety. None of them necessarily have signs that are explicitly externally visible.     

Some forms of disability, especially environmentally induced rather than hereditary, can disproportionately affect those of particular ethnicities or social groups. For myriad social, economic, and structural reasons, these groups are also often more likely to be of lower socioeconomic standing than their non-minority (and/or abled) counterparts.

According to the CDC, in 2020, 1 in 4 Black adults and 3 in 10 Native American/Alaskan adults in the US are disabled, compared to 1 in 5 white adults. These groups also tend to be disadvantaged compared to their white counterparts, with 18.8% and 34.0% living in poverty, respectively. In comparison, only 7.3% of white US citizens fell below the poverty line in 2019. (Census.gov, 2021) (Northwestern University, 2021)  In addition, 25.9% of disabled people in the US lived in poverty in 2019, compared to 11.4% of their abled counterparts. (Elflein, 2021)

Adults who live in poverty are also three times more likely to be arrested than those who do not. Those earning 150% of the federal poverty level or less are fifteen times more likely to be charged with a felony. (American Action Foundation, 2020) 

These problems and the intersectionality of invisible disability with race and socioeconomic class are multifactorial. They are not able to be solved easily or overnight. However, with greater awareness and understanding of the complex nature of these situations and groups, the remedy can perhaps begin.

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The next lecture in the Race and Disability series produced with our partner, Sanchia A. Callender, Inc, takes place on Tuesday, November 16, 2021 at 6:00 PM. Each of us carries a set of assumptions and beliefs that arise from our experiences with the people we most commonly interact with. This lecture will explore how to manage those assumptions and ideas to open doors for mutual understanding.

Our Race and Disability Lecture Series focuses on educating, empowering, and including stakeholder voices in the conversation about the black community's intersection of race and disability. Our goal is to engage in meaningful discussions addressing the problems that the black disabled community face.

Black equity and excellence is the rigorous pursuit of knowledge, critical thinking about issues, and inclusion of all components of black society in conversations about the black community. It is the commitment to equipping the community to shape its future through education, empowerment, and inclusion. Finally, it is the freedom to create new experiences and explore new ideas. By creating opportunities to acquire knowledge, engage in critical thinking, and include the voices of disabled people, our race and disability lecture series fosters black equity and excellence.

Our partners currently include Sanchia A. Callender, Inc, The Academy of Excellence, Inc, Masking and Kompany, and Straight Independent Radio. The race and disability lecture series is made possible by the Black Equity and Excellence Fund of the Community Foundation of Central New York.

By Liza Citron
Update 10/4/2021 3:18 PM to include additional information.

We may wish to think that the atrocities of institutionalization and the legacy of Willowbrook (Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy) are far behind us. There are currently institutions in existence that disturbingly mirror those of the past. The Judge Rotenberg Educational Center (JRC) in Canton, MA, is one such institution. Opened in 1971 as the Behavior Research Institute, the JRC has come under fire for the use of electroshock devices to control residents. Residents at the school are developmentally or emotionally disabled or fall under the vague heading of displaying “autistic-like behaviors.” They are also approximately 90% from the greater New York City metropolitan area and 90% of minority ethnicity. The high proportion of residents from minority ethnic groups suggests a compounding stigma of race and disability.
 
While taxpayer-funded through the public school system, the JRC curriculum is reportedly nonexistent. Students are often placed in front of a computer with little active teaching. In addition, the center’s distance from where most of its residents usually live leaves individuals, families, and communities out of the accountability process.
 
The JRC uses graduated electronic decelerators (GED), delivering as much as 90 mA per two-second shock. For reference, a cattle prod delivers a shock of up to 10 mA for a fraction of a second. The GED is worn like a backpack by the disabled individual and weighs up to 10 pounds. Teachers or other authority figures use remote controls to administer shocks for unwanted behavior. The practice is governed by controversial applied behavioral analysis (ABA) methods and conditioning methods described by behaviorist B.F. Skinner in the 1930s and 40s.
 
JRC staff administer shocks in response to innocuous behaviors such as brief moments of closed eyes or diverted attention. In addition, actions such as crying out while being shocked result in shocks. Regardless of the effectiveness of Skinnerian or ABA methodologies themselves, such treatment can only be described as horrific and torturous. Residents are in a seemingly endless cycle of shocks, and some residents become nonresponsive. At least six people have died at the JRC since its founding.
 
The Food and Drug Administration (FDA) banned the use of GED devices on humans in March 2020. The GED-4, delivering the highest voltage shock, was never approved for use in the first place. In July of 2021, the D.C. Circuit Court overturned the ban, stating it was out of the scope and jurisdiction of the FDA to do so. The JRC argued, and the appeals court judges agreed, that the FDA did not have the authority to enforce the ban. In essence, use of the GEDs could not be banned specifically for the purpose of behavior modification. The devices either had to be prohibited or approved outright, in all circumstances.
 
The legacy of Willowbrook and institutionalization are not as far away as some might think. Individuals on the internet and in- person continue to speak about the conditions for residents at the JRC. Many of them are disabled themselves.
 
Everyone, abled and disabled alike, needs to understand the implications of allowing the JRC to continue shocking vulnerable youth. Read articles like this one and the ones referenced here—sign petitions. Write to your state and federal elected officials asking why taxpayer dollars fund the torment of young people with disabilities. And ask them why better community supports aren’t funded for this vulnerable population.  #StopTheShock #StopShockingAutisticPeople


Resources and Information

• Life Fantastic: The Judge Rotenberg Educational Center
• Life Fantastic: Back to School (Transferring JRC Residents)
• Is it legal to electrically shock these people or animals with the Graduated Electronic Decelerator as a punishment
• Autistic #StopTheShock Twitter
• Graduated Electronic Decelerator
• FDA Takes Rare Step to Ban Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior
• Rule Banned Devices; Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior
• “Prisoners of the Apparatus”: The Judge Rotenberg Center
• Time to end public funding of Judge Rotenberg Center: Canton residential school still relies on harmful ‘aversive therapy’
• Keep Speaking Out To #StopTheShock!
• #StopTheShock
• #StopTheShock Sample Letter

Chief Encouraging Officer of Life (C.E.O.O.L), Writer, Editor & speaker who strengthens teams in diversity & inclusion.
Scott has strong administrative and coordination skills for back office operations within banking and corporate environments. He is recognized as a reliable resource for the needs of constituents within the organizations that he serves. He utilizes an analytical approach to solving business needs and finding effective solutions.

Scott is a dynamic individual who continually learns and brings a positive optimism and energy to corporate culture as he provides leadership for the corporate vision. His is deeply committed to the success of local philanthropic organizations through volunteering.

#HolidayWishList
#HolidayWishWeekPlease fill out the contact form to let us know what you will be able to donate to Sanchia A. Callender, Inc to support our joint program offerings with The Academy of Excellence, Inc. Your Generosity ensures that our Executive Leadership Tribe can utilize our funding to provide direct services and programming as we continue to develop our learning spaces of EXCELLENCE!

#HolidayWishWeek will run Saturday 12/19- Wednesday 12/23 and donations can be dropped off at 324 University Ave. at our curbside pick-up.
For more information please email: Aoexcellenceinc@gmail.com

WISH LIST ITEMS:
Refrigerator
Microwave
Hotplates
White Boards and/or chalkboards
Filing Cabinets
Storage Cabinets
Laptops or Desktop Computers
Printers
Vacuum Cleaner
Cleaning Supplies
Classroom Air Purifiers
Sanitizing Supplies
Copy Machine
Storage Bins
Telephone System (6-12 phones)
Fireproof Safe or Lockbox
Office Supplies
Classroom Supplies
Educational Toys
Books
Sensory Tools
Bean Bag Chairs
Musical Instruments
Art Supplies
Prepared Shopping Lists or Gift Cards:
Walmart
Target
Wegman's
Price Chopper
Price Right

I'm a college student going for a degree in social work, and work with NeuroDiversity Consulting to shed light on issues through that lens. 

I am also neurodivergent, having been diagnosed with Asperger's Syndrome (and working on a re-diagnosis) in my very early childhood. Most of my life has been spent seeing things through that different -- not wrong or broken, but different -- lens and filter. 

I was that girl who would go on and on about particular interests -- some of which changed from year to year -- and devoured books in my spare time. I was the one trying to wrestle in this neurotypical-ruled world with my differences, and with how they changed my outlook on life. That dilemma evolved into my interest in special education and advocacy. Children receiving special education services can benefit from having a staff member in their corner who went through similar struggles. My experiences help me understand, and I care enough to help tailor curriculum and learning methods to meet student needs. I struggled with many elements in my elementary school life. I want to help in any way I can so students don't have to go through that themselves. If I can help even one student, that's worth it for me. 
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What/who (else) am I? In short, I'm not only a neurodivergent social work student, but a musician, writer, artist, disability advocate, and much more. I'm autistic, but that's not all I am -- it's just the way I see the world.