Tag: social issues

The Vulnerables: Disability in a Pandemic

woman in wheelchair in kitchen — Photo by Marcus Aurelius on Pexels.com

By Ashley Jacobson, Esq., MA, CRC

Disability Rights Attorney, Advocate, Activist

Originally published May 3, 2020

Reviewed and re-published (because, well, it’s still as relevant as ever) on February 23, 2021.

The coronavirus, also known as COVID-19, has sunk its teeth in our daily routines, shaking up our normal practices and forcing us to grapple with its consequences. In those discussions of the COVID-19’s impact, you’ve likely heard repeatedly that there are some people more at risk of contracting and experiencing severe symptoms of the virus. Of those at risk, people with disabilities have often been seen and discussed as “vulnerables” not worthy of preservation, not worthy of mourning, not worthy of access, and not worthy of input. As a physically-disabled disability advocate and attorney, I wanted to explain where that notion comes from, while further promoting that it’s not an accurate evaluation of the worthiness of the uniquely-abled (my invented joke phrase for people with disabilities, which more aptly describes our creative inventiveness and adaptability like super heroes, and is a nod to everyone pushing “differently abled” as a softer approach than just calling us what we want…disabled).

Though disability advocates have fought hard to receive equal treatment as citizens under several disability rights laws, the plight of those with disabilities is far from over. It’s cemented in a well-documented battle throughout the history of humankind, which created a world built to exclude. People with disabilities were isolated (google “Ugly Laws” when you’re looking for a real downer), killed, not trusted, malnourished, shamed, ridiculed, and not educated properly for centuries.

Most families have someone in their family tree who experienced this cruel level of stigma based on disability. I’ve recently learned about a link to this historical discrimination in my own family.

In the 1940s, after barely surviving starvation under Nazi occupation in the Netherlands, my grandmother, her 11 siblings and 2 parents made the trip to the United States. They suffered for years under the Nazi regime, and wanted to return to my great-grandmother’s home country–the US. It took over a year after the end of World War 2 for my great-grandparents to get passports for all of the children. They traveled to the U.S. as a family, but were torn apart when there was a problem with one of the children–Nilah, my grandmother’s sister–at Ellis Island.

Nilah had epilepsy and she was not allowed immediate acceptance into the States.

Many readers may know someone (or be someone) with Epilepsy. If you’re familiar, you’re probably thinking “Why would Epilepsy be a problem when entering the U.S.?” Well, today, it probably wouldn’t be. But after WWII, among the medical community there was a false notion that Epilepsy was contagious, or hereditary, or just plain not what the forefathers would want in this country. So, upon entering the U.S., my great-grandfather was allowed entrance with 11 of the children, including my grandmother, while my great-grandmother and Nilah were holed up in Ellis Island for months. They were tested emotionally and physically in isolation, while my great-grandfather looked for work and cared for 11 children with $400 to his name, while living at my great-great grandmother’s home.

Shocking to no one today, Nilah was not contagious, and after several months was allowed to move with her mother to meet the rest of the family in Philadelphia. But Nilah’s journey with disability wasn’t safe from danger.

Once settled in the U.S., Nilah was taken to a very well-known medical facility and my great-grandparents were told she should receive a lobotomy for her Epilepsy.

In my graduate studies in the disability rehabilitation counseling program at Michigan State University (HIGHLY RECOMMEND THIS PROGRAM), I watched in-depth videos and read about lobotomies. You may have heard of these procedures, which historically damaged the brain using an “ice-pick”-like device (a great story on these linked below).

Though Epilepsy can be a very serious condition, the notion that it would become less serious by damaging Nilah’s brain with a lobotomy seemed unfathomable to my great-grandparents. The day they turned down the lobotomy gave Nilah the chance to adapt in her own way to the world as a woman with a disability (though I wonder if she ever personally identified herself as part of the disability community or if it was just something she thought was unique to her). Nilah went on to have a loving life and family of her own.

But Nilah’s lobotomy recommendation by that doctor still doesn’t sit right with me. Instead of finding ways to healthily incorporate Nilah into the world, or importantly looking at alternatives first, doctors flippantly and far-too-quickly recommended an incredibly dangerous, serious procedure.

But Nilah’s story isn’t unique. People with disabilities have been put in compromising, dangerous situations forever. Into the 1970s, people with disabilities who were completely capable of inclusion in typical society were institutionalized–many in horrific environments resulting in abuse. Willowbrook became infamous for such abuses including lack of nutrition, individuals living in cages, living in feces and human waste, lack of appropriate medical care, overcrowding, under-staffing, and under-valuing people with disabilities including those with Down Syndrome, Epilepsy, Depression, Post-partum Depression, symptoms now-indicating potential Autism diagnoses, and various other conditions fluctuating from mild to severe.

Many of the individuals in institutions like Willowbrook were capable of living among those without disabilities, but were sent to the institutions after their parents were given discriminatory guidance by medical professionals who expected and understood too little. There was a lawsuit (linked below) which held that the individuals living in Willowbrook had their constitutional rights violated, and the major de-institutionalization movement began to emerge. This movement led to major disability institutions “transitioning” its occupants into the community.

But de-institutionalization while valid in theory, was ill-equipped in practicality. There were not sufficient community supports that provided safe housing, education, and jobs for individuals with disabilities who had been segregated from society for most of their lives. From that point onward, many people with disabilities were forced to live on the street. Many were put in situations that left them financially and physically vulnerable. The perceptions of those without disabilities towards people with disabilities was incredibly damaging. They saw people with disabilities as “dirty, homeless, beggars.”

Then, when wars added returned-soldiers with disabilities to the community, the number of homeless individuals with disabilities grew substantially. Sitting on the street, with caps in their hands, begging for money and work–the term “handicapped” was popularized though derogatory in origin.

This societal view towards people with disabilities hasn’t caught up with the actual movement and progress spearheaded by those in the disability community.

Through repeated stigma, discrimination, and seclusion people with disabilities communicated their abilities, their willingness to work, their dreams for a more accessible and inclusive future. Many have proven to be leaders in their communities, and yet, they are still viewed as “vulnerable” and “unworthy burdens” on our system.

This is why, when a pandemic hits, they are seen as less worthy of medical care. When a “normally healthy” person and a person with a disability both are in the running for the last remaining ventilator, the “healthier” one receives it. This is why people with disabilities were terrified of the orders coming from states indicating medical protocols deeming us less worthy of that same medical care. Less worthy, despite being just as influential (if not more influential) as other contributors to our communities. Less worthy, despite also being spouses, parents, and service-members.

In Michigan, Governor Whitmer participated in a disability teleconference this past week which I observed via Zoom (note, “observed”–because actual people with disabilities were not able to meaningfully participate in the discussion and instead agency leaders communicated what they believe the disability community needs during the coronavirus…but that’s to be discussed later). In this discussion, Whitmer indicated that an executive order had been signed indicating people with disabilities as worthy of the same medical access and care as those without disabilities (new post in the works on this). However, it became even more clear to me that the topics we discussed were necessary because stigmas and discrimination against those with disabilities have a long way to eradication.

People with disabilities are still seen as unworthy–still seen as acceptable deaths in a pandemic where many of these deaths could be avoided. Protesters of my state, Michigan, were vocal about this. It’s “only” the vulnerable individuals who will die, and they are likely to die anyway! Coming from one of those “vulnerables” who serves her community day in and day out, I hear you, and you are wrong. Most of us aren’t more likely to die earlier than you outside of a pandemic. We are more likely to manage health conditions, lack of access to healthcare, employment, and education. But more likely to die, more worthy of dying? For most–nope.

However, I recognized that stigma the instant it radiated out of your hateful mouths into your megaphones. It’s not new, its just more brazen. And I’m here to tell you that the disability community is not going away. In fact, we may even be more equipped to surviving the perils of this pandemic than you are. We’ve historically been forced to live for long periods in isolation, on less money for performing the same work as you, with more barriers in our way built by those who dismissed our existence–yet, we’ve remained.

We are not just worthy. We are just as worthy as you are.

Resources:

NPR story on lobotomies

NY ARC v. Rockefeller

“I Can and I Will:” accessibility on Fixer Upper

For a family that consists of a person with a disability, accessible housing is often at the forefront of their minds but unattainable until their wallets catch up with their needs. In a world that is still largely built for the typically able-bodied, it is challenging to find a house that is accessible. When you can’t move freely around your home, can it really feel like a home?

A couple of weeks ago on the television show Fixer Upper, Chip and Joanna Gaines worked with the Tim Tebow Foundation to renovate a house for the Copp family. The Copps have two young boys, Calan and Lawson, who use wheelchairs for mobility. After Tim Tebow meets with Chip, the show catches steam with Chip, Joanna and Tim meeting the Copps at a baseball diamond. I loved how the boys were shown playing baseball and being active. So often when shows involve people with disabilities and it has a charity angle, they tend to make the people with disabilities look needy to garner sympathy for the people with disabilities and pride for the charity. It was nice showing how empowered and able the boys are, as it showed them doing a typical but cherished childhood activity. It also shows how with the right accessible technology and equipment, people with disabilities can do the same activities as the temporarily able-bodied.

As the episode goes on, Joanna shows the parents the mock-up of the renovations they want to complete for the house. Some accessible aspects of the home: ADA accessible bathrooms with lowered sinks and mirrors that tilt so they can provide a lower angle for the sons who sit lower to the ground in their wheelchairs; a separate lower sink in the kitchen; a table that allows users of wheelchairs to pull right up to it height-wise; hallways wide enough to have wheelchairs pass through without it being too tight; ramps to get in and out of the house; posts and handrails that allow the boys to stand, move and play; and wheelchair-accessible van storage space. The show also highlights an inspirational message in one of the rooms to encourage the boys to continue to grow (*hint* it’s in the title of this article).

This show really exposed the needs of a family that includes people who use wheelchairs. I loved the overall feel of the show. It was a feel-good episode for sure, but it had a very empowering angle. Without giving away spoilers, the show ends with the boys receiving a remarkable backyard that allows them to use their space to their maximum ability and desire. The show brings about an important issue though—a family that has a person with a disability has an unending amount of expenses. Too often, people with disabilities are forced to “make it work” in an environment they were living in prior to acquiring a disability—even if that environment is unsuitable or completely unworkable. A father who uses a wheelchair shouldn’t have to eat in the living room because the dining room table is too short/tall for his wheelchair to fit. A person with a disability shouldn’t have to be carried around their own house when they have the independence through the use of assistive technology to move around on their own. While the Tim Tebow Foundation did a wonderful thing in funding this renovation for the Copp family, the vast majority of families that have a person with a disability in them are forced to pay large amounts of money with or without insurance, even with assistance from government or other financial-assistance programs.

This is why accessible buildings, homes, and other structures must become the norm as opposed to the exception. We must continue to advocate for accessibility, and for reasonable pricing for making a home, car, or other device/structure accessible. Being able to navigate this world with a disability should not be considered a luxury—it is a right. I for one am grateful for shows like Fixer Upper for showing this angle of living with a disability.

Thank you,

Ashley Jacobson, MA, CRC

legallyabled@gmail.com

For details on the show’s episode mentioned above, click below:

A detailed review of the Copp family’s episode

Person-first language (and the “R word”)

In a culture where there is a clear divide between those who just want to “stop being sooo politically correct” and those who want to make sure they are being respectful, it can be challenging to know what to say (and what not to say). It becomes even more of a challenge when you are attempting to talk about a population of people or a person in particular, and you are not 100% sure on the right terminology to use.

So, hopefully this post will clear things up a bit when it comes to discussing a person with a disability and why this topic matters.

So first—why does what you say matter? Language is one of the most significant indicators of emotion. Language dictates how you process the thoughts, feelings and actions of another person in your brain. Language is used in gathering your perception of others and your environment.

Language directly affects how you treat others, because it demonstrates how you think about them.

Historically, people with disabilities have been (wrongfully) perceived as weak, pitiful burdens in our society. From the “handicapped” label first used to describe homeless veterans with (what we now know as) Post Traumatic Stress Disorder, who were sitting on the street with their “caps in hand” asking for money, to the middle-schoolers (and many adults) using the “R word” to make fun of their friends when they are acting stupid, our society has made it very clear that it was deemed socially acceptable to stigmatize people with physical and mental differences.

I have worked with the disability community for over a decade. In seeing many challenges my clients faced involving the legal system, I decided to go to law school. I am a law student, and I complete my studies this August. In my current law school program, which I have loved, I have encountered professors, classmates and administrators who (knowing our school has students with disabilities in attendance) talk about people with disabilities like trash. A professor in a class I greatly enjoy, in response to me saying I want to represent people with disabilities, said, “Oh, you want to represent the meek and pathetic.” To which I did not hide my shocked expression as he quickly moved on to the next topic.

I have many professors who are socially conscious, and respectful towards students and other people with disabilities. But, I also have heard professors refer to accommodations as “special treatment” and refer to people with mental illness as “crazies” while rotating their index finger in a circle next to their head. These are accomplished, intelligent, highly-educated professionals. Yet still, training on disability appropriateness and inclusion has not been emphasized in their studies. These are attorneys and professors who represent and teach people with disabilities on a daily basis, even if they don’t know it. They aren’t bad people. They’re just misinformed and desensitized based on societal conditioning that people with disabilities aren’t worthy of respect.

This stops right here, right now. It never was, and never will be acceptable. This is not a recommendation, but a requirement. This is a heads-up that what you say matters, and if you use offensive language you won’t be accepted, and it isn’t cool.

Over 52 million people in this country have been diagnosed with a disability—over 2 million people in Michigan (where I live).

Disability is part of the human experience. It’s not grim, but it is the truth that at some point in your life you will have a disability. If you haven’t yet, it could happen tomorrow or in 20 years. But you cannot deny that at some point, as you age, you will face trauma and change, physical and emotional. In living life, you are putting your body in a position where it wears down over time. You will experience unpredictability in your life and you will have to learn to accept it, adapt to it, and thrive with it.

In that moment, when you are likely dealing with extreme physical and emotional changes, and grieving over abilities lost and limitations imposed, would you want to be insulted or would you want to be respected? You wouldn’t want people to categorize you as a burden, or incapable, or unworthy—because you are not any of those things simply because of a physical or emotional disability.

You’d want to be seen as a person, first and above all else.

This is where the person-first language shift began. The disability community and its advocates decided that someone needed to display how to appropriately talk to and about people with disabilities.

First, you call the person by his/her name. If the disability is not relevant to the conversation, it is not necessary nor appropriate to attach it to your description of the person.

When disability is relevant to the conversation, use person-first language. Instead of saying “disabled man” say “man with a disability.” Instead of saying “schizophrenic” say “woman with schizophrenia.” It takes practice to get in the habit of using the right phrasing, but it’s important. You are literally and semantically putting the person first. This emphasizes that person, their abilities, and their individuality over any disability that might follow.

Person-first language should be your foundation. If the person with the disability prefers you to use other language or phrasing, always comply with what language they feel comfortable with, but NEVER use the “R word.”

Let’s talk about the “R word” for a minute. The word “retarded” was part of a clinical diagnosis (mental retardation), that our society deemed an insult for someone they perceived as stupid, irrational, or ridiculous. So, our society decided to use this part of the clinical diagnosis, not toward those with a diagnosed intellectual disability, but instead towards people without disabilities as a way to criticize or ostracize them.

Because our selfish, rude, and ignorant society twisted this clinical diagnosis into such a horrendous insult, the word lost its original meaning completely. The word became a weapon instead of a condition. A simple word began to carry so much hate and stigma in its delivery, that this large community of people with disabilities had to actually protest and advocate that medically and legally the word be removed.

To anyone out there who responds to a request to stop using that word by saying, “but technically I am right, because that’s what doctor’s use,” you’re wrong. You’re also (likely) not a doctor. It is not used in laws, textbooks, nor in practice. You have a brave girl named Rosa to thank for that. Rosa’s law was passed in 2010, and if you want to read the actual law that was passed, you can find it here.

Rosa was a strong, smart, driven young girl who decided that she was tired of being made fun of, and tired of others using the “R word” to make fun of others. With the support of many senators, representatives, and public advocacy campaigns, Rosa took this change in language into her own hands and asked the government to remove the “R word” from its laws. Rosa was successful in achieving this goal, after “Rosa’s Law” was signed and approved by former President Barack Obama in 2010. Additionally, after seeing the mess that was the movie Tropic Thunder, the “Spread the Word to End the Word” campaign spread the message that using the “R word” to make fun of someone in the media and socially is unacceptable.

Most importantly, if you are wondering other reasons as to why you should not use the “R word” besides it being technically incorrect, offensive, and ignorant, you just shouldn’t use it because people with disabilities don’t want you to. It’s that simple. Be a decent human being to other human beings. You will someday be in their shoes, and you’ll want someone to show you empathy and respect when that happens. But even if you are the rare exception that is not going to have a disability someday, it takes more energy to spread hateful language than it does to just be decent.

For these reasons, you also want to be really aware of how you perceive people with disabilities. This is where it can get tricky for many people without disabilities, because you may not be using words that you find to be offensive, but you are inadvertently mislabeling or stereotyping a person with a disability.

You may mean well when you say someone is “inspiring” simply because they are living with a disability. But when you say that someone is inspiring for doing things that a person typically does each day, it’s more than a little condescending. We know, you are acknowledging that there may be more things a person with a disability has to do to achieve the same results you can in your day-to-day activities. But when you say that someone is “inspiring” or “overcoming her disability” in doing typical daily functions, you are also sending the message that her life is so awful and unimaginable, that she must have to overcome her horrible circumstances. Don’t be patronizing. Be respectful.

What does it boil down to? People with disabilities don’t want your pity or sympathy. They want your respect and empathy. When you say someone is “suffering with…” or “overcoming…” or “confined to/by…” you are invoking feelings of pity, your inclination is to feel sorry for that person. It’s like saying, “his life is so awful, he is suffering/overcoming/confined by his disability.”

Instead, you can use (when the disability is relevant) “sustained a brain injury,” “diagnosed with…” or “living with (insert disability here).” This language normalizes disability, instead of dramatizing it. Disability may be part of that person’s life, but it’s not their whole life and it certainly is not who they are. People with disabilities adapt to their differences, or even utilize their differences to become successful.

I appreciate those who have stuck with me here. This is a good cheat sheet I use in many of my presentations:

Also, keep in mind that certain disability populations take pride in their label because they do not see it as a stereotyped label but instead use the term as a way of indicating a community of like-experienced individuals. Person-first language should always be your starting-point—your foundation. As I stated earlier, if the individual states he wants you to refer to him in another way, it’s okay to refer to that person using the term he has provided. Always start back at these guidelines though with new people that you meet.

Thank you for caring and sharing.

Ashley Jacobson, MA, CRC

legallyabled@gmail.com