Author: Ashley Jacobson, Esq., MA, CRC

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

A Decade with Physical Disability

Over the last 10 years, I accomplished and overcame the following happy, messy, life moments for which I’m truly proud. I hope others with chronic illness and other disabilities know that your life has just as much potential for love and fulfillment as anyone else’s. Ten years ago, I wish I would’ve known that my life could be this full. I hope everyone living with disability comes to know that feeling.

In the past decade, I:

Ran a half marathon, with no running experience prior to signing up
Got very sick out of nowhere, was in the hospital over 100 times in four years
Persisted, finished my undergraduate degree but missed my graduation because I was in the hospital
Ended a bad relationship
Moved, lived alone for graduate school in counseling people with disabilities/illness
Was the 4th woman ever to receive an experimental medical device in a study at the University of Michigan with surgery a week before grad school started
Started grad school, but after five weeks had the courage and ability to set my ego aside and take a semester off for health reasons
Returned to grad school the next term after receiving health treatment in Boston
Kissed my now husband on New Year’s Day 2014
Graduated with my master’s degree summa cum laude
Got a great job counseling people with disabilities
Became a fiancé in Vegas
Bought our first home
Adopted my cat Sprinkles and dog Thor 1 week apart. They became besties and loved my then 17-year-old dog Lucy
After having a counseling client deal with an incredibly frustrating and discriminatory experience with the law, signed up for the LSAT on a whim
Took the LSAT 4 days before my wedding
6/11/16 became a wife
Honeymooned in St. Thomas at the Ritz
Got a scholarship to law school, where I would graduate in 2 years (rather than the normal 3)
Met the most amazing friends in law school
Lucy passed away at the age of 20, after 12 happy and healthy years with me
Graduated law school in 2 years magna cum laude
Discovered after some heartbreak that what I was initially told by doctors when I first got sick was true, I would not be able to have my own biological children. After some time and with support from my husband, truly and finally accepted this and moved with joy toward the unknown future
Dealt with a family emergency that was difficult on us all
Faced blatant discrimination when taking the Michigan bar exam
Waited for the bar exam results for three months
Spoke with Governor Whitmer’s Office about the discrimination I faced while taking the bar and advocated for other people with disabilities
Found out I passed the bar exam, was sworn in as a lawyer on my 31st birthday
Moved back to the Ann Arbor area for a great job as a lawyer that utilizes my background in disability on a daily basis
Practiced gratitude every day in one or more ways, felt loved and inspired, challenged myself with goals I never thought possible at the start of this decade. Did it all in physical pain, with constant nausea and fatigue but enjoyed it anyway. Prioritized self-care while not settling for anything less than the future I wanted and deserved. Advocated for people with disabilities for over a decade. Felt fulfilled. Still happy.

Michigan Bar Exam Discrimination: My Experience

In February 2019 I took the Michigan Bar Exam. This is not a tale of a disgruntled student who failed. This is the account of a woman (me), who passed the test despite severe and persistent discrimination.

Below is the letter I sent to the individuals named in an effort to prevent this treatment from ever happening again to the many law students with disabilities. This matters–not because it happened to me, but because we have no reason to believe it will ever change without taking a stand. I didn’t publish this until now for many reasons. I was emotionally healing from the events. I was deciding the best way to implement change and considering all of the methods for doing so. I was trying to find a job and am aware that employers still aren’t completely understanding that people with disabilities are smart and sufficient employees. Life went on and I immersed myself in all of the opportunities I earned. Then, this morning it hit me that 2020 is steadfastly approaching, and students are prepping for the February 2020 bar exam now. Those students deserve equal treatment under the law. They deserve better treatment than I received. So, here it is. Please be kind, because it’s not easy to share.

This is the letter I wrote and submitted, detailing what happened:

“To the Board of Law Examiners, Western Michigan University Thomas M. Cooley Law School, Governor Gretchen Whitmer, and any other interested party:

My name is Ashley Jacobson. I graduated law school in two years, at the top of my class, magna cum laude. I have a master’s degree from the #1 ranked university in rehabilitation counseling (Michigan State University). Rehabilitation counseling is a field devoted to counseling individuals with disabilities by teaching empowering skills and strategies that enable their highest levels of achievement and independence. I graduated with an overall 4.0 GPA in undergraduate and graduate school. I am nationally certified as a Certified Rehabilitation Counselor (CRC). I have worked for a large university and non-profit organizations as a disability and accommodations specialist. I have started two successful non-profit organizations of my own. I am also a person living with a physical disability.

On February 26^th and 27^th of 2019, I sat for the Michigan bar exam in Lansing, MI. In all of my experience counseling individuals with disabilities, working in the disability field for over a decade, working as an accommodations and disability specialist, I have never witnessed the level of discrimination against a person with a disability equal to what I experienced on the days of the Michigan bar exam.

I was prepared for the test itself. I studied for 10-12 hours each day leading up to the exam for months. I made materials my entire 2 years of law school in anticipation of the bar exam. I had the grades, the abilities, the focus, and the determination to pass this exam on my first attempt—which I did, despite all of the discrimination and hurdles placed in my way by the Board of Law Examiners. Months before the exam, I submitted all necessary medical documentation and was approved for accommodations. Attached is the letter I received on November 28, 2018 approving the accommodations as listed below. To note, accommodations are changes in approach, not changes in standard. Accommodations are not meant to “level the playing field,” as that phrase is used today. Accommodations are methods that allow the student to display their abilities without the unnecessary barriers inflicted upon them in average testing conditions. I received the following accommodations, as approved by the Board of Law Examiners:

A private room, close to a restroom.
30% additional time for each session of the bar exam.
The excusal from having to use a scantron, with my marking the answers in a way that I am able (circling) and a scribe (the proctor) to fill in the scantron per my marked answers.
The ability to bring in acid-reduced water, medications and medical supplies.

From this point forward, I will list the number of ways I was penalized and discriminated against. I will then explain in detail how I was penalized on the basis of having a disability and how, as such, my rights as an individual with a disability were infringed upon.

I was discriminated against in the following ways:

As a student with a disability, I was penalized with excessive noise not inflicted upon students without disabilities.
I was penalized by being given the incorrect finishing time for the afternoon portion of the essay section of the exam.
I was penalized for being a student with a disability by the exam administrators, who did not plan for my proctor to act as a scribe in accordance with my accommodations.
I was penalized as a student with a disability by facing a blatantly discriminatory and inappropriate confrontation from an exam administrator at the start of a testing session.

First, as a student with a disability, I was penalized with excessive noise not inflicted upon students without disabilities.

On the 26^th, the first day of the exam—the essay portion—I arrived early at the Lansing Convention Center. My classmates and fellow bar exam takers were at one end of the conference center, where it was isolated and quiet. There were no other events taking place where the students without disabilities were testing. I found my private room, which did have a restroom in it, at the other end of the conference hall. I was testing in a room labeled the “First Aid Room,” and the Lansing Conference Center security staff informed me the hall consisted of several First Aid Rooms throughout the facilities. My First Aid Room, where I was to be testing seven to eight hours each day, was directly next to a professional party for the Farm Bureau’s 100-year anniversary, attended by 400 individuals celebrating with loud music over the speakers, a booth set up outside of my testing room, news interviews right outside of my small room, food and drinks. Evidence from news coverage and a facility map corroborate my detailed account of the events.

Students without disabilities were not exposed to excessive noise, yet I was interrupted repeatedly because of poor planning on part of the exam administrators that greatly affected my ability to put forth the same effort as those without disabilities. I was wearing ear plugs, but could still hear full conversations between individuals shouting and partying outside of my room. My proctor left several times to ask them to be quiet, and when she returned, she said verbatim, “Yeah, they just said it was their 100 years and didn’t really care. Sorry.”

At the conclusion of the morning testing session, the proctor told me that she could find me another room, but that (as a direct quote) they “would not be able to provide all of [my] accommodations because it probably wouldn’t have a bathroom close by.” My additional testing time was calculated based on the exam coordinators’ planning for me to have quick access to a restroom, so I was hesitant to move rooms and not receive my accommodations. Most importantly, I need a restroom close by because of the medical treatment I am undergoing which causes sudden nausea, vomiting, and restroom usage. Also, once accommodations are approved, they cannot just be taken away. It was my right to receive these accommodations so as not to be discriminated against under the Americans with Disabilities Act. However, the bar coordinators thought their poor planning justified removing my accommodations on the day of the biggest exam of my life. Further, as a member of a protected class I was given disparate treatment based solely on my disability.

I said to the proctor that I needed all of my accommodations, so if that could not be provided in another room, moving to another room was not really an option.

I then attended a lunch held by my law school during the break in between the morning and afternoon testing sessions on the 26^th. At that lunch I explained what happened to my Constitutional Law Professor, Christi Henke, my Intro to Law and Academic Resource Center professor Jeanette Buttrey, and Julie Mullins, who administered my testing accommodations throughout law school. They were just as shocked and upset as I was. They stated that the Board of Law Examiners and testing administrators do not have a choice but to provide my approved accommodations which luckily, I knew because of my background and education, and that for the multiple-choice section the next day (if not sooner), I absolutely needed to have them move me somewhere quiet and provide all of my accommodations.

On my way back to my testing room, I stopped at the Farm Bureau’s party booth to ask if they would be there all day. They were there until 6 p.m., my entire testing day. They also told me that the conference had been scheduled for several months—the 2020 conference is already scheduled at the facility for next year. The administrators of the exam saw no issue with putting a person with a disability at a disadvantage, surrounded by excessive noise. They saw no problem with subjecting me to barriers not placed in the way of students without disabilities. Regardless, I knew I needed to get through the next session and try my hardest to focus on the task at hand. I worked too hard to let this completely derail my success, so I tried to “buckle down and push through it.”

Second, I was penalized by being given the incorrect finishing time for the afternoon portion of the essay section of the exam.

At the start of the testing session I put anything I had away as instructed. My proctor started the session and stated I would be finished at 4:40 p.m. I said, “Okay, so 4:40 p.m.?” and the proctor confirmed, “Yes, 4:40.” I then calculated and organized a specified amount of time for each essay based on the end time given to me by the proctor, and began the last five essays of the day.

The proctor left the room a few times once again, which I assumed was to ask the people outside of my door to be quiet. Imagine my surprise, at 4:05 pm, when I was given a 15-minute warning and still on essay three out of five. I stopped and asked, “wait, I only have 15 minutes?” The proctor said (verbatim), “Oh yeah, so when I left the room it was because I realized they wrote down the wrong time for you to end so I tried to give you a 30-minute warning when I came back in after confirming their mistake but I was worried because I could tell you didn’t hear me because you were trying to tune out noise.” I had to rush and write down anything I could on the last three essays, until I was abruptly cut short.

The most frustrating thing was looking at those last three essays specifically, knowing I had so much more I could write, knowing the material they were looking for in an answer, and watching those points slip out of my grasp because of the testing administrators’ “mistake.”

I also will add that in my time of working in the disability field, working at MSU in the Resource Center for Persons with Disabilities, and taking several tests with accommodations, including the MPRE, messing up the time like this does not happen to exam administrators who have prepared even the most minimal amount, because testing times are the easiest element of accommodations to plan. Giving a student with a disability the incorrect finishing time is not a small mistake—it is a disservice and barrier only faced by students with disabilities who rely on the times given to us.

When I finished, I asked the proctor, “Are they not used to accommodating students with disabilities or something?” The proctor responded, “Yeah sorry again, the lady who normally does the testing accommodations is retiring so it’s a new person and they’re still figuring everything out. Hopefully you finished.” I didn’t.

I told the proctor that I needed to be moved to another room for the multiple-choice section. I explained my professors’ rationale to the proctor by stating, “Multiple choice questions require an even higher level of focus, because the questions are written with details leading you to the wrong answer, so you have to dissect and identify to pick the correct answer. I couldn’t risk reading the questions over and over like I was forced to with the essays based on the noise. I needed to focus.” The proctor said she would work on finding me a new room.

On February 27^th, I returned to the Lansing Convention Center. On my way in, I saw a dean from my law school, Dean McDaniel. I explained what occurred the day before, and he said that I should talk to someone about that and that I should let him know if I run into trouble but he was not sure there was anything he could do. I ran into Julie Mullins. She walked over with me to my private testing room, where we waited because I had not been told what room I was moved to yet. When the proctor arrived at my old room (the First Aid Room) at 8:30 a.m., she took me to a large banquet room directly next door to the students without disabilities. It was private, but the restroom was many times further away from where I was sitting as the restroom was in my old room (I timed it prior to testing: the First Aid Room restroom was five seconds from my seat, the restroom in my second room was three minutes away from my seat—which in multiple choice context is a major issue). This would not have been such a problem, except for the fact that the additional time I was given in my approved accommodations was calculated based on the examiners knowing I would not have to make that length of a trip to the restroom. I was not afforded time to make up for this added barrier.

However, I realized that this was the best I was going to get. Julie Mullins explained to the proctor that we were upset in how I was treated the day before. The proctor admitted to all of the aforementioned events I specify in this statement, and Julie stated we needed written documentation stating these events occurred. The proctor stated she did tell the director, so it had been noted, but Julie insisted that I receive written documentation about the noise and being given the incorrect finishing time. The proctor was defensive in her tone, but agreed to provide the documentation. I reiterated to the proctor that I understood that any issue I was facing with my accommodations was not her fault, but we do need to address them because it is not allowed to treat students with disabilities in this way. Julie also made sure to ask that people would not be walking through the room I was in while testing, as walking on those floors was very loud (they were concrete and women in heels could be very distracting), and the proctor said, “They shouldn’t.” They did.

Throughout my multiple-choice testing sessions (both morning and afternoon), I had several people walk into and through my testing area, some talking loudly, not realizing I was testing in there because they had me behind curtains squaring me off in the middle of the large conference room. The proctor did her best to jump up and ask people to be quiet when they came in, but it was distracting. I counted the first seven times this occurred, but after that I lost count because I was trying to focus on complex multiple-choice questions.

Third, I was penalized for being a student with a disability by the exam administrators who did not plan for my proctor to act as a scribe in accordance with my accommodations.

The most egregious discrimination was with regards to my accommodations relating to the scantron. On the multiple-choice section of the bar exam, students fill in their answers on a traditional scantron sheet, bubbling in their selections. My physical disability causes severe hand tremors. It is a systemic response to the symptoms of my autoimmune disease, and anyone who has ever taught me or taken a class with me can attest to this (in addition to my team of doctors at the University of Michigan). In law school, they did not use scantron sheets so this was not an issue. For the MPRE they did use scantron sheets, but they provided the accommodation of me marking a page in a different way instead of filling in the bubbles of a scantron answer sheet.

For the bar exam, I was approved for the accommodation of marking the answer in my answer booklet and having the proctor, a scribe, fill it in for me on the scantron. The best way I can explain this hurdle is that, for a student without a disability, imagine you have to take the biggest exam of your life, eight hours long, but you can only write on the scantron holding the pencil in your mouth and not using your hands. That is what it feels like when a student with hand tremors is forced to bubble in a scantron—it is an extreme disadvantage.

There was one major problem—the bar exam coordinators completely forgot to plan for my proctor to be my scribe.

At the start of the multiple-choice section, my proctor started explaining the steps for getting started and I inquired as to whether she was supposed to be my scribe or if a scribe was coming. She said, “You’re supposed to have a scribe? You can’t fill in the scantron? I have no info on that.” She sighed and walked away. When she returned, she stated, “They said I could just fill it in for you. But you have to bubble in the name and stuff on the scantron.” As I was bubbling it in, it took me several minutes, holding my writing hand with my non-writing hand to try to steady it enough to mark it correctly. The proctor stated, “Oh, so you can fill in a scantron.” My ability to fill in the scantron was not the point—the point was that it took me several times longer than students without disabilities because of my disability. I pointed that out to her, and we moved on and I started the multiple-choice questions.

At the end of the morning session I handed her my test booklet, in which I circled my answer selections. The proctor took my test booklet and the scantron. I asked if I would be able to confirm that she filled in my answers correctly, which of course I explained meant nothing against her, but that human error happens and this exam is a big deal. She said she would ask. Ultimately, I was not allowed to confirm that the answers I selected in the booklet were selected on the scantron for me. I was frustrated because I had no idea if another human, though well-intentioned, could mistakenly mark my scantron. Students without disabilities know their selected answers are being marked the way they intend on the scantron. Apparently, students with disabilities have to put their faith in a stranger.

During the lunch break on the second day I made my way to my law school’s luncheon and explained to Julie Mullins that yet again, my accommodations had been improperly planned and executed (or not planned at all) and Julie was just as exasperated as I was. A representative from my school contacted the head proctor, who explained that my use of a scribe should be continued as follows: I would select my answer, the proctor would fill in the bubbles as I did each question, and if I had time at the end, I could double check the scribe’s bubbling. This is still discriminatory, as being able to check for another human’s error is something students without disabilities do not have to worry about, but it was uniform with other students needing the same accommodation for the same reasons for the bar exam so I was told that was how I was to conduct the afternoon section. These instructions lead to the last major way I was penalized solely based upon being a student with a disability.

Fourth, I was penalized as a student with a disability by facing a blatantly discriminatory and inappropriate confrontation from an exam administrator at the start of a testing session.

The events I am about to describe to you (like everything detailed in this letter) are not an exaggeration. This is word-for-word, action-for-action what happened next. I returned to my testing room after lunch. The proctor returned and shortly before 2 p.m. we started to prepare for the last testing session. I asked her if the head proctor had talked to her about the accommodations for the scribe situation and explained what I was told about how I should continue per the steps outlined a couple of paragraphs above. The proctor sighed, said, “I’ll be back,” and left hurriedly out of the room.

She returned two minutes later with another woman, who had the first name of Maribeth, and was later identified to me by the proctor as Maribeth Preston. The older woman approached my desk while I was sitting, with her standing above me. She said, “So this is what’s going to happen. I’ve been doing this job a long time and I’m in charge. You’re saying the proctor is supposed to bubble in things as you go. That’s not how it works.” I explained, “A representative from my school spoke with the head proctor about this, and said that was how it was supposed to work so that’s the only reason why I asked her (the proctor) about it.”

The woman stated, “I don’t know who they talked to, but clearly you’ve been misinformed. I’ve worked this job for a long time. That’s not how accommodations work. You’re saying you can’t fill in a scantron?” I explained about my hand tremors and my accommodations that were approved months ago. I said, “I submitted paperwork and medical documentation months ago and my accommodations were approved then by the state bar people—” she cut me off, “well, we’re not the state bar people.” I explained, “Well it was the board of law examiners, or whoever, but I went through the proper channels to get accommodations for the bar exam and they were approved. Since I started this test, I have not received all of my accommodations, and I have been penalized in ways students without disabilities are not.”

She actually rolled her eyes upward and repeated, “So you’re really saying you can’t fill in a scantron?” I said once again, “No, I can’t.” She continued, “You say you got approved for accommodations, do you have the paper with you showing that?” This stranger, claiming to have worked in this position for years, was making me justify not just my accommodations, but also my disability, on the day of the exam, at the start of a testing session. What made this more upsetting was that this woman was the same woman who signed the letter approving my accommodations.

I said, “I was told I could not bring any other paper with me besides my admission certificate, and no I cannot fill in a scantron for the exam, which is why I was approved for the accommodation months ago.” She said, “Well what you’re asking for, you needed accommodations approved, because everyone is different. And, that’s not how accommodations work.”

I informed her, “I know how accommodations work. I worked as a disability and accommodations specialist before law school, I have my master’s in disability counseling, I worked in this field in this job and I know not only am I not getting my accommodations but I am also being discriminated against solely because I have a disability and this is unacceptable.”

The woman rolled her eyes upward again and lifted the one corner of her mouth and looked at the proctor. I continued, “Yesterday I dealt with noise that students with disabilities did not have to deal with, yesterday I was given the incorrect finishing time and then cut off which students with disabilities did not have to deal with, today I was moved to a room further from the bathroom without accounting for the time difference it would take for me to walk there and back, and today I was not provided a scribe until I demanded one and then now I’m being told not only do I not get to use a scribe appropriately but I have to put my faith in a stranger that my scantron is being marked correctly…”

The woman cut me off and said, “Well the proctor doesn’t fill it out. There’s two people behind the scenes that fill it out and I check it.” I’d like to note that the attached letter approving my accommodations specifically states that the proctor fills out the scantron.

I stated, “No one explained that to me, but it still doesn’t account for human error. Students without disabilities don’t have to worry that their answer selections are going to be mismarked by a complete stranger.” We went back and forth in this same conversational circle for several minutes.

The woman stated with a harsh tone of voice again, “So you’re really saying you can’t fill in a scantron?” I realized at this point that I was being judged, and nothing I could say would make this process just. She continued, “Well, this is how it works, and the proctor will do this the way I am saying, and if you are saying you can’t fill in a scantron—” as tears welled up in my eyes from frustration I cut her off and said, “You could’ve sent the proctor out here to explain to me that this was not how it was going to work, but instead you came out here to argue with me and frankly, your presence here is counterproductive to me doing my best on this exam so I would like you to leave, because now I have to do 100 multiple choice questions. I am going to take the test now, and I will file complaints and whatever else necessary after the exam is over. But I need to focus on this test, and you are hindering my ability to do that.”

As I burst into tears, the woman left. I looked at the clock. She had come out to talk to me at 2 p.m., it was now 2:19 p.m. This woman had come to argue with me, for no other purpose than arguing and belittling me, for nearly 20 minutes at the start of my testing session. Students without disabilities did not have to face rude, humiliating confrontation for nearly 20 minutes at the start of their last testing session, before having to complete 100 multiple choice questions.

The proctor said, “Listen, I get it, if you need to take a few minutes to walk around to refocus you can.” I went into the hallway, and unfortunately no one from my school was there anymore—the halls were now empty. I went into the bathroom in the outside hallway, cried for four minutes, looked in the mirror and determined that no matter what, even if it was not my best work, I had to finish. I worked too hard to give up because of the test administrator’s ignorance, discrimination, and lack of preparation.

I realized this was it, and no matter how many hurdles were in my path I needed to just do the best I could with the circumstances I was given. What other choice did I have really? The woman who came out stated that she was the one in charge, so I couldn’t exactly speak to her boss.

I returned to my desk. I sat down, and finished the exam. I had a difficult time even reading the pages because I was crying. But I finished, and only by the grace of God and substantial preparation on my end—I passed.

I paid a lot of money to take this exam. I put in a lot of time and energy to prepare for it. With my health issues, I even had to physically train so that I would be able to physically make it through the test. My disability was something I overcame repeatedly throughout graduate school and law school. In law school I had three separate surgeries take place the week before or the week of final exams. I was at the top of my class despite undergoing chemotherapy, despite having my medical device malfunction, despite hospitalizations and surgeries.

I shouldn’t need to justify myself in order to receive a non-discriminatory environment, but nonetheless I feel the need to reiterate that I am a smart woman. I am not asking for special treatment. I am asking for the opportunity to showcase my abilities without discriminatory barriers inflicted upon me or any other students with disabilities. I am asking for the opportunity to display to all of the wonderful professors who assisted me throughout law school, who supported me through each health hurdle, that our hard work together meant something—it meant with their help and my persistence I could be a lawyer. I made it through this, but too many students with disabilities do not. They are denied every year for accommodations because without them the Board of Law Examiners says they can function at the average level of people without disabilities. The point of an accommodation is not to be average. An accommodation is removing unnecessary barriers so a person can show their true ability.

The behavior of those “in charge” is an alarming display of how students with disabilities have been treated for a long time in this field. I am demanding equal protection under the law. I am demanding not to be discriminated against for having a disability. I am demanding compliance with the ADA, not just for me but for all students with disabilities in the future.

I have worked as a disability advocate for years, and even my law school is well aware of my advocacy for students with disabilities while in law school. I have seen my counseling clients mistreated, but never have I witnessed a test administrator mock in disbelief a person’s disability. The tone of voice, the repeated questioning of my disability, the lack of preparation in planning the execution of accommodations, and the unwillingness to conform with the law was flagrant and unacceptable. I was not able to do my best work because of these hurdles. Even me, the disability counselor, was not prepared to face what I faced on those two days because it just did not seem in the realm of possibility for this to happen to me—until it did, over and over.

Students without disabilities already face stress, pressure, fear, fatigue, and brain fog for the bar exam. It is grueling. I expected that. But students with disabilities deal with all of those things, plus the many hurdles placed in their way by exam administrators and proctors. On my way out of the last testing session I ran into another student who had just finished the bar exam. She was upset, and we started talking about our experience. She told me first, that she was a student with a disability who was not given the view of a clock during testing because of the way they situated her for her accommodations—which is monumental for the bar exam when we are not allowed to bring in watches of any kind. Out of respect for this student’s confidentiality I will not disclose her identity. Her choice to disclose her experience is her own to make, but I wanted to include her in this because I am certain that I am not the first student with a disability to receive prejudicial treatment.

The passage rate on the bar exam is already somewhat low, and those who pass need many things to go right in order to do so. Students with disabilities have a higher bar—they must make many things go right when everything around them is going wrong. I have had people tell me that my concerns and advocacy aren’t necessary if I passed. I could not disagree more. It matters regardless of the outcome. The Americans with Disabilities Act was violated. Members of a protected class are being mistreated by leaders who have no interest in reforming this system. This is discrimination, and it cannot be accepted in a field devoted to just treatment under the law.

My urgent recommendation is that the Board of Law Examiners be held accountable for this atrocious discriminatory treatment, that a new Board of Law Examiners Director be nominated by Governor Gretchen Whitmer, and that this new appointee have actual experience and expertise in disability rights and accommodations. A perfect candidate would be a person who has a master’s degree in Rehabilitation Counseling, is a Certified Rehabilitation Counselor (CRC), and also has legal experience. I would be happy to submit recommendations of specific individuals who are qualified for the position, or help in any other way to prevent this discrimination from occurring in the future.

We cannot stand by while people with disabilities are stifled by prejudice. We cannot accept discrimination, because to do so would be telling people with disabilities they are not worthy of respect, dignity, opportunity, or equal rights under the law.

Thank you,

Ashley Jacobson, Esq., MA, CRC

Disability Rights Attorney, Advocate, and Accommodations Specialist”

Unintended victims of the “opioid crisis”: Chronic Pain Patients

Head to my YouTube now (https://www.youtube.com/channel/UCClrdkiH_6RTZ1mRiIBVv6A) to hear more about how people with legitimate chronic pain from disease and/or disability are adversely affected and stigmatized by those fighting to address the Opioid Crisis. This is super important. Studies have shown that over 85% of people who use pain medication to manage long-term chronic pain from disease or disability never become addicted or misuse their medication. This crisis must be addressed, but it must be addressed in a way that doesn’t criminalize people in the disability community who rely on pain management for a decent quality of life. I hated seeing my counseling clients, friends, and family members affected by this. Going through the proper channels is vital, but it is delaying appropriate care for far too many people. This has to change. Let me know what you think!

Disability Rights & the killing of Pam Turner

Head to my YouTube to hear my thoughts as a disability expert & advocate on the killing of Pamela Turner, a woman who lived with schizophrenia. While she was walking her dog, her life tragically came to an end at the hands of violent police officers. I’ve provided trainings to prosecutor’s offices on how police and attorneys need to learn to assess every situation differently to accurately account for disability, and how easy it is to de-escalate a crisis involving a person with a disability. Check it out and let me know what you think!https://www.youtube.com/channel/UCClrdkiH_6RTZ1mRiIBVv6A

My Request to MI Governor Gretchen Whitmer

In February I was the victim of severe, blatant disability discrimination and violations of the Americans with Disabilities Act. The person who wronged me was nominated by the past governor of Michigan and appointed by the Supreme Court. In an effort to file a complaint against this high-level government employee, I have discovered that the jurisdiction of who can receive my complaint is limited but includes the Governor. I voted for Gretchen Whitmer, @gewhitmer on Instagram, after hearing her speak at the first Women’s March in Lansing, MI before she was elected. She spoke about the importance of diversity, community involvement, and listening to others.

Now I hope to work with Governor Whitmer, my governor, to prevent this type of discrimination from ever happening again in our state and country. I’ll keep reaching out to her office until we have the opportunity to discuss these issues and my evidence-based ideas for resolving them, which are grounded in my work as a disability expert. It’s 2019, and yet even as a disability expert and counselor I was shocked to experience the discrimination I faced solely because I am a person living with a physical disability. We cannot accept discrimination because to do so would be telling people with disabilities they are not worthy of respect, dignity, or opportunity.

•[image description for those using screen readers: a picture of the banner of a website showing Ashley Jacobson’s request to voice a concern to Governor Gretchen Whitmer’s office has been submitted. Governor Gretchen Whitmer’s picture is at the top of the photo, and she is a white woman with brown, shoulder-length hair who is wearing a navy shirt under a red blazer. She also is wearing a very classy pearl necklace. Next to her picture to her right is the text, “Governor Gretchen Whitmer,” and to the right of that is a small outline of the state of MI and “Michigan.gov” with a light picture of a bridge behind that.]

New video on YouTube!

I uploaded a new video (with captions!) on YouTube today about the real purpose of accommodations and correct a common myth! Check it out! Ashley Jacobson’s YouTube channel

New YouTube Channel!

I have created an accessible YouTube channel that features disability topics and strategies for living your most fulfilled life with disability! It has captions and the videos are quick and easy to follow, covering news topics, disability issues, and methods for living your best life. Let me know what you think!

Ashley Jacobson’s Channel

As always, thanks for sharing and caring!

Ashley Jacobson, JD, MA, CRC

Disability Expert & Advocate

Self-Determination: how to love, but empower your loved one with a disability

Self-determination is a tricky process for people with disabilities because it operates on a continuum. Life is unpredictable, and for the most part–so is disability. But, with self-determination, the person with a disability can regain some level of control and dictate the choices and direction of her life. Self-determination is a concept where a person has the confidence and ability to decide and move forward with the best, next-steps in his own life. Not what you or I think is best, but what they want for their own lives. For many, especially those with disabilities, well-meaning loved ones have in a lifetime of protecting the person with a disability (PWD), have actually kind of sheltered or unintentionally taken control over the life of the PWD.

It’s difficult for loved ones, and I understand that better than most. I have been guilty of being a helicopter constantly propelling what I thought was best over the person I love with a disability. It’s incredibly challenging to shut that off because you love that person and want what is best for them. I know it may seem like I’m asking a lot for you to back down (or if you are a PWD, to take control)…but please, hear me out.

When I was a special educator, and then a rehabilitation counselor (CRC), I saw many students and young adults with disabilities that had their differences in ability. They had skills that needed more developing, skills they were not capable of displaying, and skills that made them unique assets in the best way. However, those unique-asset skills were often under-utilized because they had not practiced them independently on their own incentive or triggering. For example, they could do really well in an interview after having practiced and trained, but they were going on job interviews below their skill level because someone (though again, well-meaning) told them this job would be “so good for you!” Or, they were not going to job interviews at all because their loved ones were really (and understandably) nervous about them putting themselves out there and taking a massive step towards independence.

The biggest limitation in the life of any person is their own belief that they are limited. Yes, of course individuals (with disability or temporarily able-bodied) have to be realistic. I’m not saying someone who has never dribbled a basketball, or someone who has played in a community basketball league–has the skill to try out for the NBA. But I am asking for you to not make assumptions about their abilities or limitations, because when you assume their limitations, they see themselves as inherently limited. Really sit down with the person, and ask him what he would like to learn. Ask him what skills are important for adults to possess. Objectively think of the many skills he has already learned, and try to compare those to the skills he wants to learn.

I am not suggesting that anyone just shut down and remove themselves out of the PWD’s life in one clean break, no longer helping the PWD with anything. It is a process, and of course you will never just be out of their lives–you love them! Nonetheless, self-determination is learned and blossoms in an environment that encourages growth, independence, and inclusion. This is one of the reasons why so many adults with disabilities phase out of the public education system, and wind up under-employed or unemployed. Further, when students learn skills at school relating to independence, they lose those skills if they are not generalized and practiced in the home-environment. And trust me, I completely understand that as a loved one of a PWD you are busy and have many, many responsibilities for yourself and your family. That’s why I want to give you some tools and strategies for encouraging the independence of the PWD so that maybe it can at the same time lessen your work load and empower your loved one.

It is difficult for many people without disabilities to break down the appropriate steps in fostering and empowering independence in a PWD. Every person is different, but here is an example of how one could foster the self-determination process in an adult with a disability (Also: You can reach out to someone who works in this field–like me!–if you want guidance on appropriate steps for a specific person…again, progress is a continuum with steps forward and steps back, and that is okay. This does not have to happen overnight!).

Self-determination skills: Determining food choices

Watch a cooking show on tv that discusses nutrition and healthy eating
Practice cooking simple meals in the kitchen with the PWD, emphasizing safety and nutrition (boiling water for pasta, making pasta, cleaning up after making pasta, with canned sauce)
The PWD cooks on his own while the loved one is not overseeing, but is in the general area in case the PWD has a question
Show the PWD where to find coupons, and discuss how much food really costs
Watch tv shows about the health effects of not eating nutritious (but don’t be too scary about it, especially if the PWD is someone who can get easily overwhelmed or experiences severe anxiety–in this case you can discuss food choices in terms that are not so daunting with regards to the health consequences)
Have the PWD go to the grocery store with you and have him hold the list (if possible, have him read and check off the list as you go–if he is not able to read, that’s okay too! You can sit with him and go through grocery store inserts, pamphlets, magazines, coupon clippings, etc. Just cut those pictures out and make the list out of pictures. You can even draw the pictures!)
After practicing #6 a few times, and if he is safely independent in public (as in, won’t go with strangers, won’t give his money to strangers, isn’t a harm to himself or others), bring him to the grocery store and have him gather the food on the list while you wait at the front of the store with a book/magazine
After practicing #7 a few times, practice money skills. Discuss pricing of food and different ways you can make payment. Go through #7 and at the end of each time you shop, have the PWD give the money for payment to the cashier. If the PWD gets nervous, that’s normal. You can go at times when the grocery store is less busy, or teach him how to use the self-checkout line, but ultimately practice will help him feel more comfortable.
After practicing #8, and if he is safely independent in public, bring the PWD to the grocery store and wait in the car as he shops for the food on the list, and pays on his own.
Have the PWD make the grocery list on his own, check it over to make sure it covers essential items that are financially-responsible choices.
If not yet learned, teach the PWD transportation options like the bus. Public transportation systems have disability-accessible bussing but the more inclusive the better (again, depending on the actual, realistic abilities of the PWD). A PWD should live and operate in the least restrictive environment as appropriate. It may take time, and it will be a little daunting for both you and the PWD, but that is a normal part of growing up and in time and with practice, he could gain much independence and allow more free time and balancing of responsibilities for you and your household.
Have the PWD look up transportation options on his own, and then schedule it on his own, go food shopping, pay, and return home on his own.
Combine steps 1-12.

Again, this is just a generic example. Some of these steps can be combined or adjusted if the PWD is more advanced, or they can be broken down even more. I’ve broken down the process of making a PB&J into nearly 60 steps before for a client with a disability. The most important thing is that we don’t just give up and do something for a person with a disability simply because it’s the easier and quicker thing to do. Sure, there may be days when you do not have time to pre-teach, teach, and re-teach. When you do have time though, the best way you can love a PWD is by loving their independent drive and spirit. After all, you cannot and will not always be around and in times of need the PWD should feel competent to do as much as he is capable.

This post does not come from a place of judgment. I’ve been there, personally and professionally. I know what it is like to see a loved one go through something difficult and have to maneuver life-changes after the fact. This is just guidance on a tricky part about loving a PWD, and as always I am here if you have any questions! Feel free to email me at legallyabled@gmail.com

Thank you for reading and sharing,

Ashley Jacobson, JD, MA, CRC

Disability Expert and Advocate

Women Are Speaking Endo: but who’s actually listening?

Senator Warren, first and foremost— THANK YOU! I cannot even begin to tell you how much this tweet means to me. I am a disability advocate and expert, who is now 30 but at age 21 was diagnosed with Endometriosis and other co-occurring chronic illnesses. However, I started exhibiting symptoms years earlier.

Here’s the landscape of endo care in America. Endometriosis is more painful than child birth, and yet EVERY SINGLE WOMAN diagnosed has been told multiple times it’s all in their heads. It takes years to find an actually qualified surgeon, and the treatment options are archaic. Female diseases are stigmatized at such a higher rate than diseases that primarily affect men because women who report symptoms are seen as people who are exaggerating, irrational, and emotional instead of reasonable individuals showing clear evidence of disease. Delays in diagnosis caused serious damage to my internal organs and body systems. It’s not painful periods. It’s pain allll month long. It’s nausea every day of my life. It’s the detrimental cells that form and in time create damage and scar tissue that binds my internal body parts together and simple physical movements cause them to tear apart and create more damage. It’s the children I may not be able to conceive because endo is the leading cause of infertility. It’s wasting many days, nights, and money in traveling to specialists for surgery and checkups and paying thousands of dollars for treatment of symptoms because researchers don’t care to find a cure.

You may have lately seen commercials saying #SpeakENDO or that encourage speaking up about endo. They show women at the doctor and they are hesitant to share just how awful their symptoms are. The doctor is asking, “how has your pain been?” and the woman is down-playing it. This commercial INFURIATES me. Women ARE telling their doctors of their symptoms, over and over and over again. Doctors are the ones who aren’t listening. Doctors are the ones down-playing it, saying it’s all in our heads. Doctors aren’t asking us those questions. And as we get sicker and sicker they act like we’re getting crazier and crazier. Doctors are spewing myths about how a hysterectomy or getting pregnant will cure endo when there is no cure. Doctors are saying that because an ultrasound or a CT scan doesn’t show anything, endo isn’t present—when endo can ONLY be diagnosed through a surgical laparoscopy.

The truth is that women ARE speaking up. I’d love to see a campaign or commercial that shows just how women are really treated when they speak up. They are more than ignored—they are treated like drug-seeking scum. This is what endo is.

I’m eternally grateful that someone in politics is showing care and compassion, and I pray this commitment to finding real options and de-stigmatizing endo continues past this tweet. As a future attorney (I finish law school in less than a month 💛) I would love to see women with chronic illness receive the proper care and legal attention required when this disease becomes debilitating, tough preferably before that. I’d love to see reform in the medical field as to how this disease and other diseases are taught. I’d love to see policy changes and licensing consequences that are correlated to the mistreatment of female patients. I commit myself to making a positive change and being an unwavering advocate. Senator Warren, I hope you do too. Thank you for your tweet. Thank you for bringing awareness. The endo community is grateful.

Thanks to @drsalliept for bringing this tweet to my attention and as always, thanks to @endowhat for being a persistent agent of change in the endo world 💛