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New Podcast Update: Pressing Disability Issues and a Personal Update!
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New Podcast Update: Pressing Disability Issues and a Personal Update!

Transcript:

Hello everyone and welcome back to the legally abled podcast. My name is Ashley Jacobson I am a disability rights attorney, a disability counselor and assessment specialist, and a physically disabled woman living in the state of Michigan. And I’m so thrilled to be bringing this podcast back. I created a little legal evil podcast when I was in law school. After I saw a lot of injustice is happening against the disability community and I wanted a way to raise awareness of that and also share the many many resources that I’ve acquired. In the past, gosh, I would say, 13 to 15 years working in the disability arena and living with disability. So some things have changed since I started the podcast, I am no longer a law student, I am a lawyer, which is very exciting I’m loving what I’m doing.
I’m also a disabled entrepreneur, I have my own law firm called Jacobson law and advocacy. And I have my own consulting firm, which allows me to do, counseling, on adopting to disability accommodations assessments for the workplace. And for schools including universities and grad school, and really sink my teeth into all of the ways in which
I can provide trainings resources and counseling to people with disabilities of all ages, and that’s through my consulting firm called adaptive inclusion. So, my life is very disability centric personally living with lupus and other chronic illnesses, as well as working as a disability rights attorney.
So there have been a lot of changes, I would say over the last year and I’m really excited to be bringing this podcast back on a weekly basis. I’m going to definitely do at least once a week. And each podcast will broken up into 15 to 30 minutes segments, because I received some feedback from people saying that, especially for certain types of disabilities. The loss of focus might be something that’s difficult in longer podcasts so they, you know, my, so not a little bit or get distracted or have difficulties with memory and sensory and things that caused them to go back and try to find where they left off. And so I will be chopping these episodes up into 15 to 30 minute blocks of time.
And I’m really receptive to any feedback, especially if it will accommodate your disability if it will make this podcast more accessible for you, for your loved ones. Please do not be afraid, let me know.

So I wanted to do a little bit of a roundup now that you’ve got your updates on me on current events, and issues facing the disability community because I’m going to be diving into all of these topics, weekly, and interviewing some truly amazing guest so I’m really honored to have the opportunity to interview.
I’m really honored to have the opportunity to interview. And I already have some awesome people lined up Disability Advocates disabled writers actors policy writers.
Politicians attorneys educators and other counselors.
And I want to focus on the key issues in the Disability Justice Movement, while also having a little bit of fun and share her favorite taste of disability in the media, because there is some incredible media content out there for people with disabilities,

Whether it’s on social media, or TV or movie is, we are coming for it all.
And so, you know, in the last year with the covenant team pandemic.
It has never been more glaring that people with disabilities are treated as less than or not worthy, or not as important, then they’re not disabled peers.
Not only did we have to hear, politicians, people on the news, friends, community members say that it didn’t matter if we had more severe symptoms of covert if we were to catch it.
Because our lives weren’t as valuable.
And they would say this messaging through things like.
It’s only the vulnerable people who are affected by coping, which we know to be not true.
But then they would clarify that the vulnerable are old people, and disabled people. People with underlying conditions.
And so for over a year.

I’ve heard leaders. People have no saying that essentially it didn’t matter. They weren’t going to wear masks, they weren’t going to social distance. Because if they caught coven, it wouldn’t be that big of a deal.
When I was holed up in my home for over a year, I didn’t go anywhere but the pharmacy, and usually it was my husband going to the pharmacy and going to the grocery store, or to the doctor.
I did have surgery during the pandemic, which was a very interesting experience, to say the least.
But that surgery was delayed for about six or seven months while you know most surgeries were on hiatus, providing emergency medical care to people with COPD, which is understandable.
But it was not understandable, was the lack of empathy that I experienced daily from strangers on the internet to famous people who just didn’t get that there are millions and millions of people in every state of the United States, who have disabilities who contribute to their communities, support families have friends and loved ones that care for them and that they care for deeply. And many of them work. Some of them don’t and they volunteer. Many are prominent advocates online and in person.

And yet, we were truly treated like we were disposable.
So I wrote an article about that it is up on LegallyAbled.com I wrote it initially, I want to say it was in April of 2020, it is now may of 2021.

And while some things have changed. some things remain the same.
I am fully vaccinated, which is great news.
I did get covert after being fully vaccinated. So I urge everyone to be careful, even if they’re vaccinated.
And because while I was careful. You know, it’s still happened. And while I’m very, very grateful.
Because I feel as though having the vaccine allowed me to experience co bed in a still pretty severe way, I would say, but much less severe and scary that I’m sure it would have been had I not been vaccinated.
So about a month ago, my husband co bed.
And one of going to the hospital, really messed with his blood pressure. He’s doing much better now.
But then shortly thereafter I woke up in the middle of the night, and I felt like I was choking. And that was really scary because I don’t normally experienced that, but I do have autoimmune disease and so I wasn’t sure if it was related to that or not. And I went to my primary care doctor first thing that day, and I said you know I don’t know maybe I should get back on doing my breathing treatments. And he said I’m going to test you for COPD. And I truly thought there was no way I had it I mean I’m such a hermit. And I don’t go anywhere. And I knew my husband had it but I was also fully vaccinated and I heard that it was pretty rare. I think they say point 1% of people who are fully vaccinated still get it but again they probably have less severe symptoms than they would have had they not been vaccinated. They still, but I mean what are the odds I’m in that point 01 percent of people. Turns out for me and my body that’s pretty good for that so I’m grateful to have mostly healed from that.
You probably can’t tell from me rambling on this podcast, but I am still having some shortness of breath.
If you’re watching this video. You can see that I’m going to let this flare up right now I’ve got a rash on my face and my body I think is just kind of bouncing back in its own unique way from having coven and having an autoimmune disease during that. But speaking of the vaccine.
One of the other updates that highlighted the way in which disabled people your view during this pandemic. Was that many of them were not given access to the vaccine appropriately, in my state, the state of Michigan.

Essential workers like and mostly were given access to the vaccine first that makes sense, right it’s a public health crisis they’re providing a central services.
We need to protect them, they’re valued members of our society.
But then, at least in my state.
And in a lot of other states and I’m seeing this to where they open up vaccines to people 65 years or older.
And while a big portion of the disability community is in that each group.
There are millions of people with disabilities who had been told for over a year.
In some cases, that they were vulnerable to the most severe symptoms of co op ed.
And yet, because they weren’t over the age of 65. They weren’t given access to the vaccine.
In fact, caregivers of people with disabilities were given access to the vaccine sooner than the disabled individual themselves. That’s a huge problem. We’re literally assessing whose lives lives are worth saving. And we’re doing it in a very public way, a very direct way. And we’re sending the message to a huge chunk of the disability community that they’re always the last right i mean they’re always the last to come to mind. They’re the last to get opportunities to get protected and the statistics are even more staggering for black disabled individuals.

We found that in many states, and I’m a white disabled woman, but just from my professional background I’ve been keeping track of the statistics, and the reports that are coming out from different counties in different states, and even different countries and black disabled individuals were disproportionately affected by lack of access to the vaccine, lack of access to adequate covert testing and treatment. And so not only was the disability community dealing with this negative messaging throughout the whole pandemic and they’re still dealing with that.
But they’re also dealing with life threatening issues here. And yet, throughout this pandemic.
I really heard anybody reporting on it outside of myself and many Disability Advocates online but in the mainstream media. It wasn’t really that reported on. And so that was also disappointing.

Other updates pertaining to disability current events and issues that are important to our community.
In the last year there’s been a lot of awareness and really an uprising to no longer be complacent or accept the police brutality that’s inflicted against black people.
Black disabled individuals are among the most affected by police violence and brutality.
As a disability rights lawyer, this is not new information to me, it’s not something that I just became aware of it’s not something that I just started advocating against.
But the past year I’ve seen a lot of people who normally didn’t pay that much attention to police brutality start to want to learn about it and speak about it and while some of it was performative Alice ship meaning they talked about it for a few days and then moved on. And I’m hoping, truly really desperately hoping that this isn’t something that we push past or push aside, black children with disabilities have a higher rate of being more severely punished.
When it comes to having a disability and being in school.
They tend to be seen as more as troublemakers and their weight nondisabled peers, even more so than their weight disabled peers.

Even when that’s not the case that bias is there in a lot of our education system.
And then once you get into juvenile law, which is part of what I do is I represent kids who are dealing with the court system, you find that, depending on the detention center. One study found that up to 70% seven zero percent of kids in juvenile detention have disability. When it comes to the adult prison population. Again, this is just what’s documented, and what’s verified. I’m sure this number is actually much higher, but it’s around 40% of the adult inmate population has a disability.
And then you consider how disability rights are required to be provided for when you’re questioned by police. When you’re going through a juvenile adjudication, which is essentially what they call a juvenile criminal case, the system works a little bit differently for kids and adults. But when you’re going through the either as an adult or as a child, and you’re dealing with police and social workers, and attorneys and judges or referees.

You have disability rights in those settings. But if you pull aside each of these participants in our legal system.
What you’ll find is, even the most well intentioned individuals don’t have the background and disability that they need to be able to assess how disability, played a role, either in the incident alleged or in the courtroom.
And that’s why I became a lawyer. I was working as a counselor what using my master’s degree and my nationwide certification in disability counseling and assessment. It’s called a rehabilitation counselor, which is not the same thing as a substance use disorder counselor that’s a totally different fields, but sometimes people think that because they hear rehabilitation and the name, but rehabilitation counselors are providing counseling, that empower people with disabilities in the workplace in schools and in their home situations or they’re independent living or wherever they find themselves in the community really. And I was doing that, loving that, and then I had over one week I had three separate clients deal with a legal matter. I’m deal with the police. And I noticed how horribly those situations were handled and I went to find an attorney who adequately understood disability and how it would affect the clients ability to navigate the legal system with the barriers the legal system has, in their way, that are discriminatory. And I couldn’t find that. And so I thought I’ll just sign up for the offset and see, and then went to law school did it in two years went out for the bar exam past it. And I’ll get into the bar exam at another time because there’s a lot of discrimination against people with disabilities in the Michigan bar exam, a lot of accommodations being approved but then not provided on the day when you show up. I also have an article written about that and my experience on LegallyAbled.com. And as a lawyer, you know, I’ve seen many clients, interacting with the police.
As kids and as adults. And I followed these national stories that the disability community really rallied behind and advocates and raises awareness and provide the resources to speak up against it and to reach out to politicians who can make a difference and reverse things and all of that, but there’s such a long way to go.

And so in 2020, the disability community also had an awakening in the sense that the people, the disability advocates who tend to do the best on social media, they get the most endorsements that have the most followers are typically white, disabled people who have physical disabilities. Many of them are in wheelchairs or they have limb difference, and their disabilities are kind of packaged in a way that works for them, and is great and we should do that they should get those endorsements and they work hard for their pages. But we’re still needing to correct the bias in the disabled media that we consume. And so I just encourage everybody if you’re on social media, whether it be Tick tock, Instagram, Facebook, or any other app that pops up there. I encourage you to follow people with disabilities who look different than you are different, they’re different race, they have a different disability.

They are from different countries they have, they speak, maybe different languages and immerse yourself in content that is not your day to day experience, because I can tell you that it’s allowed me to be a more well rounded individual, and we’re active participants in the disability community and advocacy movement, as well as just a more intelligent person. Because you know I’m a lawyer, I’m a counselor I am a speaker, and the smartest people I’ve learned. Know that the learning never ends. And so they’re always going to be things that I know and they’re always going to be things that I still need to learn.
And so I just encourage you to go out there and follow some people who expand your understanding.
Especially pertaining to disability and our sexuality, to people who are from the LGBT q plus community who have disabilities.

People who are black and have disabilities people who are immigrants that have disabilities Native Americans with disabilities, really expand your day to day content that you’ll consume.
And you’ll find that it doesn’t necessarily have to include a lot of time to follow people. And you’re going to be on social media, anyway, so you might as well just follow some new people learn some new things. In just that and use that moving forward,

Other really important things that to the disability community right now include the climate crisis. People with disabilities are disproportionately affected by natural disasters, changes in the weather and changes in climate.
If you haven’t gotten a chance I highly recommend that you watch the gratitude Berg documentary on Hulu.
It’s a great example of somebody who’s very well known for advocating on environmental issues, but also discusses her disability, quite a bit. And some of you might not know that she has autism. She is very open about being autistic. And she’s also very open about having anxiety and depression, and having some really low periods in her life in which her environmental advocacy and understanding of her disability, helped her and kind of push on.
And so I highly recommend that you check that out but the ways in which people disabilities are affected by climate change are evident, if you look at any huge natural disaster or environmental disaster that’s happened in the last couple of years.

We saw the wildfires in California. We had millions of people with disabilities struggling to find accessible shelters meaning there’s a bed that they can get in and out of their doors that they can go through to get into the facility.
There aren’t restrooms, that they can use that are accessible for wheelchairs walkers canes medical devices and like.
Then, when you look at hurricanes and tornadoes. People with disabilities on occasion are abandoned by caretakers especially if they’re not loved ones like if they’re in a nursing home, and they’re just kind of left to fend for themselves.
Additionally, with weather changes with flooding. It restricts access to sidewalks and roads with ice and snow. People aren’t shoveling sidewalks, like they’re supposed to be in their counties. And so, People with disabilities have been stranded in those instances.

And so we’re looking at these huge Disability Justice issues, and you might be thinking, Well, what can I do to change these issues have been around for a long time? I firmly believe that one of the ways in which you can make concrete change in your community today is to investigate employment discrimination in your area, maybe at your company that you work or own, or your small business association and train on disability and inclusion and the myths that are out there. When it comes to accommodations and cost of accessibility.
Most the vast, vast majority I would say 95% of all accommodations that make workplaces accessible for people with disabilities are low cost or no cost to the employer and employers have more employees with disabilities, I’m a real.

That being said, hiring discrimination is still one of the most pressing issues.
When it comes to Disability Justice in 2020 80%, eight zero percent of people with disabilities were unemployed, compare that to 40% of non disabled people being unemployed. It’s a massive difference. And sure it was a pandemic in 2020. But this isn’t a new problem. The unemployment rate is something that frankly isn’t being addressed quickly enough, and a huge reason for that is that the non disabled community people without disabilities misunderstand what disability is what it looks like, what it looks like and how you can employ and benefit from a person with a disability working in your workplace. So we’ve talked about a lot in this podcast episode. And a lot of it has been kind of heavy stuff.


So now I want to talk about the light happy things that are happening.
This year we saw a huge effort by disabled writers and Hollywood disabled actors producers. And we’re seeing.
Amazing. Funny accurate disability in our media. Granted, is still in less than 1% of all media.
So, We need to be out there and more. We need to be given the opportunity to be out there and more, I should say.
But one of the shows that I’m absolutely loving right now is Special on Netflix. Now, it’s not appropriate for children, there are adult themes and language. But my gosh, it’s just so refreshing to see an adult comedy show that talks about disability accurately talks about adult issues living with disability as a disabled creator, writer, actor, actually, more than one, and has all of the funny uplifting moments just as much if not more than be depressing discriminatory moments. I will be reviewing Season 1 as we wait for Season 2 which comes out on Netflix on May 20th!

Thank you for tuning in to the Legally Abled Podcast! My name is Ashley Jacobson, and I will see you in the next episode!

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

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 26th and 27th 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:

  1. A private room, close to a restroom.
  2. 30% additional time for each session of the bar exam.
  3. 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.
  4. 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:

  1. As a student with a disability, I was penalized with excessive noise not inflicted upon students without disabilities.
  2. I was penalized by being given the incorrect finishing time for the afternoon portion of the essay section of the exam.
  3. 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.
  4. 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 26th, 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 26th.  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 27th, 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”

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

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

  1. Watch a cooking show on tv that discusses nutrition and healthy eating
  2. 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)
  3. 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
  4. Show the PWD where to find coupons, and discuss how much food really costs
  5. 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)
  6. 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!)
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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

 

 

 

 

Law Students with Disabilities: disability and character and fitness

Law Students with Disabilities: disability and character and fitness

People with disabilities have proven over the years that they can achieve great academic and vocational success.  With the rapid increase in disability diagnoses, and the extension of academic resources and accommodations, students with disabilities are able to demonstrate their vast knowledge and abilities.  As such, our world is filled with high-achieving professionals with disabilities.

Unfortunately, professional systems haven’t caught up with the times.  Law students with disabilities face more discrimination than most professionals, because part of becoming a lawyer is passing the bar exam, and part of that process is passing the character and fitness portion.  Law students are forced to disclose disabilities (mental and physical) and at times medical records, to prove to strangers on the character and fitness evaluation team that they are of good moral character to represent others.  By requiring this information, the Bar is assuming that disability is a negative thing–something that students must attest to while proving that “despite their disabilities they can be great lawyers.”

But why does the Bar take that approach?  You see, if any person would be a great lawyer, of good character, it would be a person with a disability.  People with disabilities face challenges on a daily basis.  They are forced for long periods of their lives to adapt to hurdles thrown their way, and compensate for their differences.  They understand the ups and downs their clients face–because they have thrived in the face of stigma and discrimination–and they have succeeded in achieving their goals.  They have become accustomed to the unpredictability and are quick to problem solve.  People with disabilities are persistent and resilient by nature, and have worked incredibly hard to be respected in schools and the workplace.

But the issue of passing the character and fitness evaluation is terrifying law students with disabilities everywhere.  Because the thing is, you pay hundreds of thousands of dollars by the time you have finished your legal education, you work hard to ace your exams, you walk across that stage at graduation, and then months later, the state bar decides if you are of good character despite your disability.  This is on its face, discriminatory.

A law student at my law school (though at a different campus) is taking a monumental step in suing the Florida Bar based on its issues with his mental disability.  This is a veteran, who served our country by working with explosives, who our country deemed was of good enough character to defend our freedom.  Yes, like many veterans he came back from a deployment with a mental illness.  He dealt with life or death situations while deployed and it’s reasonable that someone in that vocation would return with mental illness.  Complicating matters further, he was going through a divorce–known as one of the most mentally straining processes for anyone.   Also like many veterans and others dealing with especially stressful and personal life issues, he coped for a period of time by drinking too much.

This student did the right thing by asking for and receiving help when he needed it.  He received treatment for adjustment disorder and substance use disorder from the VA medical center.  He has been actively going to therapy and maintaining his mental and physical health consistently for a long period of time.

So, in return for asking for help and consistently treating his understandable mental health concerns, when this veteran tried to find a different career serving this country in an alternative way (serving citizens with legal needs), the Florida bar creates a fury of discrimination armed with stigmatic attitudes.  They want him to pay thousands of dollars to provide even more medical documentation than he already submitted, and have him

This is an issue that needs to be resolved, and quick.  Because the ADA and other related laws dictate that people cannot be discriminated against because of their disability.  Disability is a protected class, a class of people who have been historically and systematically discriminated against.  For that reason, to right the historical wrongs, the ADA and IDEA and the Rehab Act all were created to dismantle this wrongful discrimination.  Yet, the ABA and state bar’s haven’t followed suit.

They have, however, tried to shield themselves from an ADA violation by “encouraging” state licensing boards to focus on the behavior of the law student instead of their diagnosis specifically.  However, it is frequent that behaviors can be explained by a specific diagnosis.  Without explaining the diagnosis, behaviors can seem confusing to a licensing board.  Notably, these licensing boards have infrequent experience with people with disabilities.

Law students with disabilities not only have to prove and substantiate their diagnoses to their law schools to receive reasonable accommodations, they have to do the same for the MPRE, the bar exam, and the character and fitness evaluation.  In this sense, they have the cards stacked against them.  They remove card by card, proving their character and persistence again and again, in hopes that when they graduate they have a seat at the table.  But often, the people who evaluate students with disabilities are hired to evaluate them against their peers without disabilities.  They say, “clearly if this student got As in law school, they don’t need accommodations on the MPRE/bar exam because even though this student received appropriate accommodations in law school, compared to the average Joe they still would’ve passed.”  The purpose of accommodations is not to pass or beat the average Joe.  The purpose of accommodations is that the student can showcase their knowledge in a way that others without disabilities can see. 

In this way, students with disabilities are being academically handcuffed by the very institutions that could benefit from their being accepted.  Lawyers with disabilities have the unique capability of empathizing with clients, lawyers, judges, etc. They have had to advocate for themselves and their peers repeatedly throughout their lives, and as lawyers advocate and are active participants in legal organizations.

People with disabilities live life differently–they don’t live life incorrectly.  For the state bar, the ABA, the MPRE evaluation committee, and law schools to assume that based on past challenges that were addressed by correct treatment, an individual is not of good character is discriminatory on its face.

Disability is one part of a person, it is not the whole person.  To not allow a student with a disability to become a lawyer after he addressed and treated his disability is just plain wrong.  Who can better serve clients going through hell, than a lawyer who went through hell and came out on the other side?

If the people evaluating individuals with disabilities for the character and fitness see a disability (mental or physical) as guilty of bad character, and make the student prove otherwise, the evaluators are not go good character themselves.

We need to encourage, accept, and support law students with disabilities.  However, to historical legal systems apparently that is too much to ask.  So at a minimum–just don’t discriminate.

Additionally, this level of discrimination discourages treatment.  If you seek help for mental illness, you could be denied your dream career–so you don’t get help.  Lawyers are known for heavy drinking and substance abuse.   It’s a massive problem in the profession, so much so that law schools are talking with law students about it at their orientations. In fact, if many lawyers practicing in the field for years had to be once again evaluated for their character and fitness, they would fail.  In this sense, the ABA and the state bar are not encouraging present or prospective attorneys to seek treatment out of fear of losing a career they worked so hard to obtain.  They are also denying respect and fair treatment to students with disabilities, most of which are young and haven’t had decades to prove their stability, but have this used against them that they haven’t been managing their condition long enough for the bar to determine them to be of “good character despite their disabilities.”

It’s time for change in the legal profession, despite the system kicking and screaming in an outdated protest.

 

 

 

To read more about the case referenced above and the ABA recommendations:

http://www.abajournal.com/news/article/ada_lawsuit_about_florida_bar_examiners_mental_health_requirements/?utm_source=maestro&utm_medium=email&utm_campaign=weekly_email

http://www.abajournal.com/news/article/house_urges_bar_licensing_groups_to_tread_carefully_when_asking_about_menta

 

Victims with Disabilities (Part 2): The FACTS and Numbers

Victims with Disabilities (Part 2): The FACTS and Numbers

I previously posted a podcast about victims with disabilities, after having provided a training to the Ingham County Prosecutor’s Office on how to best approach a case involving a victim with a disability.  This is part 2 of the Victims with Disabilities series of the Legally Abled Podcast, where I provide the actual statistics on victims with disabilities in the U.S.   If you are a person with a disability or you know and care for a person with a disability, it is important that you know what the current state of victimization is involving people with disabilities.  Once you know how prevalent this problem is, you can start to understand how important it is to arm yourself with legal and practical  knowledge as to how you can best protect yourself if you are ever faced with this situation.

If you have any questions regarding people with disabilities, or are interested in having me provide a training on navigating life and the law with disabilities please feel free to reach out at legallyabled@gmail.com.

Please listen, subscribe, and review this podcast on the Apple Podcast app (which is pre-downloaded on Apple phones–it’s a purple App icon labeled “Podcasts”)!  For those without iPhones have a listen at the end of this post! I also am very open to answering questions on the air if you are interested in sending me questions to discuss on the podcast!

Thank you for your continued interest and feel free to pass along.

Ashley Jacobson, MA, CRC

legallyabled@gmail.com

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

 

pexels-photo-271667.jpeg

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:

person-first chart

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