Hello, and welcome back to Forking Spoons! This week we will look at the role of advocacy and take a slightly deeper dive into exactly what it means to have a disability because let me tell you - there are a LOT of misconceptions out there! Both topics require a differentiation between Big Picture and Nuance; between the Forest and the Trees, if you will. I’m framing this post specifically about disability, but some aspects are applicable to other causes.
CW: We are discussing some history about the disability rights movement. As with all fights for civil rights, shit gets ugly.
Let’s get started! First up - advocacy. Broadly speaking, advocacy is supporting and arguing in favor of a particular group, cause, or policy, but the reality is much more complex than that. Whether conscious of the behavior or not, we all advocate for something in our life. We each have some cause we feel needs to be elevated in discussion and awareness and that includes correcting misconceptions and dispelling myths. However, the type and avenue of advocacy varies greatly.
According to West Virginia University’s Center for Excellence in Disabilities, there are three main types of advocacy: self-advocacy, individual advocacy, and systems advocacy. Self-advocacy is an individual’s ability to speak out for their cause. In short, it is having the knowledge and ability to speak up for oneself. That includes knowing your legal rights, recognizing when they are being infringed upon, and the ability to articulate how that needs to change. Sounds easy, right? Not even close. This can include petitioning for accommodations in your workplace.
However, what if you are unable for some reason to self-advocate or if self-advocacy is insufficient to meet your goal? That brings us to individual advocacy, where another person or persons advocate for your cause on your behalf. That can be a parent or guardian, or perhaps an organization that focuses on this type of work. Again, these people would have to have the same legal knowledge to understand when and how rights are being infringed upon, as well as the ability and willingness to speak out for change. One example would be a parent who advocates to ensure their child receives the needed accommodations in school. Both types of advocacy address the Nuance - how a situation is inaccessible or inequitable to an individual or small group of people.
That brings us to the Big Picture - systems advocacy. If self-advocacy and individual advocacy are the tiny Trees of addressing inaccessibility, then systems advocacy is the deep dark Forest of combatting exclusion. This is when we do the hard work of changing the system that created the inequity in the first place. This can be a policy change at a business, or a law at the local, state, or national level. Two perfect examples are the Americans with Disabilities Act (ADA), which is celebrating its 30th anniversary this year, and Section 504 of the Rehabilitation Act of 1973.
*record scratch* Hold up! I need to point out that disability rights were not included in the Civil Rights Act of 1964. Just sit with that for a moment. Disability discrimination was still legal and even to this day, it is permissible to pay persons with disabilities a lower hourly wage if they cannot perform the job as well as a person without a disability. Yes - that is a real exemption to the Fair Labor Standards Act that has been in place for 80 years and that criterion is subjective AF. The Rehabilitation Act of 1973 was the first federal legislation to specifically address the rights of persons with disabilities and it took a helluva a lot of work to get there. Sit-ins. Protests. Allies. All raising the collective voices of the marginalized louder and louder. Sound familiar? *puts the needle on the record*
Both pieces of legislation fundamentally changed the world for persons with disabilities by affirming their basic human rights in the workplace and schools. However, there is an enormous difference between enacting legislation and realizing its successful implementation in the target environment. Big Picture/Forest - we passed laws to address inaccessibility! Nuance/Trees - discrimination and exclusion still happen every damn day. So… the work continues. Great.
Now that we understand the ways to advocate, we next need the knowledge to do so effectively and that comes from learning the history behind disability. This is where things get… messy. There are sooooo many myths and misconceptions floating around the world that somehow get a foothold and refuse to loosen their grasp. They range from comical, to annoying, to downright dangerous. We only need look at the current CoVID-19 situation to see this play out in real life - masks don’t work! It’s a hoax! Damn 5G radio waves! Don’t get me started on the bleach and UV light nonsense. I just can’t even. [insert: extreme eye roll]
The same fallacies develop regarding disability because to be very honest, there is still a lot of ignorance in society. “Othering” and myopic thinking molds how one sees the world and the people in it. How can you understand something that doesn't impact you personally?
So, when there’s something wrong in your worldview, who you gonna call? BiasBusters!
Myth 1: Having a disability means you are completely disabled and/or on disability insurance (SSDI).
WRONG!!! Disability is legally defined under the ADA as “a physical or mental impairment that substantially limits one or more ‘major life activities’.” “Major life activities” can include walking, sitting, standing, lifting, hearing, speaking, breathing, reading, thinking, concentrating, and eating, but this is a far-from-exhaustive list. The Americans with Disabilities Amendments Act of 2008 (ADAAA) expanded this definition to include “major bodily functions”, which can include neurological, respiratory, and immune system functions. Again, this is by no means an exhaustive list, nor does it break down the specific conditions covered, but this is the Big Picture.
Now think about how many conditions can impact these major life activities and bodily functions. Some disabilities manifest visibly, such as with wheelchair users and persons who wear hearing aids or cochlear implants, but many others are considered invisible disabilities. Migraines, diabetes, asthma, arthritis, hearing loss, fibromyalgia, Ehlers-Danlos Syndrome (EDS), Trigeminal Neuralgia (TN), Chronic Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD), and Chronic Obstructive Pulmonary Disorder (COPD) are just a few conditions that meet the criteria. There are also mental and psychological health conditions, cognitive disabilities, and intellectual disabilities. I will not expand on these because I honestly do not feel qualified, but it is still important to include them in this discussion.
Surely you know someone with at least one of these conditions. It may be well managed, but that mitigation or amelioration of symptoms does not negate the existence of the person’s disability. Many people with disabilities are able to work and live life in full way - take necessary treatments, identify and avoid triggers, and monitor their condition for changes or progression with a few additional accommodations where needed. Still a great deal of work, but with a certain number of modifications, many people living with a disability lead full and productive lives. Other people may need a greater degree of accommodation, and some may require full-time care. Some people do rely on SSDI, but that system is extremely flawed and designed more for short-term disability. Perhaps that will be a topic for a future post! Either way, every person’s life is valuable and theirs to live, disability or not. Period.
This is the important part to remember: Disability is a spectrum. It is a broadly spanning rainbow Forest comprised of millions of individual Tree experiences. It is diverse, dynamic, and defies homogenization. We encompass every race, religion, ethnicity, age, gender identity, and sexual orientation. Management of our condition is just as unique as the individual. For example, one person may have mild to moderate asthma that is relatively well controlled while another person may frequently find themselves in the ER for emergency treatment. Heat may relieve a TN flare for one person, but trigger it in the next. A treatment that is beneficial to one diabetic may be contraindicated for another. These are broad strokes, but my point is that while we advocate for accessibility and inclusivity for all persons with disabilities, we must remember that disability is an inherently individual experience and that nuance must remain part of the conversation.
Myth 2: Having a disability makes you an expert on disability.
LOL! No. Fun fact - you aren’t magically imbued with knowledge about the history of disability when you get your membership card, be that at birth or a later point in life. You certainly become an expert on your own disability as well as what you need to navigate the world, but that’s your own personal story. It does not necessarily apply in whole or in part to anyone else. It also does not supplant the work done by those who have come before.
As with any other cultural history, learning about disability takes education - comparative research from vetted comprehensive sources. It does not happen overnight. It is hard work for which there is always another layer to unearth. The truths revealed can be depressing and infuriating. People with disabilities have historically been dehumanized and relegated to sanitariums where the line between “treatment” and “abuse” was non-existent. They were viewed as incapable of making their own choices and their lives deemed not worth living - language that is disturbingly still commonplace. Why bother educating someone with no potential in life? Why protect the health of someone who is just a burden to society? Eugenics and euthanasia were more common than not and both still have their proponents today.
Like I said, shit gets real ugly real fast in civil rights and we are not as far removed from that mentality as modern society wants to believe. The disability rights movement as we know it began in the 1970s and yet disability is STILL largely removed from discussions regarding marginalized communities. In reality, laws alone do not change the world.
If you take nothing more from this post, please let it be this: there is so much that we do not know - about ourselves, our community, our neighbors near and far, those who came before and paved the way, and about the work we must do to retain the gains they made for us.
There is always something to learn and something to teach. History survives because it is passed from one generation to the next, but that new generation must choose to both seek out and accept the knowledge, then build upon it. Otherwise, we are bound to repeat its mistakes. Be sure to see the Forest and the Trees.