Disabled State of the Union 2021

I’m a disabled woman, disability rights lawyer, and disability counselor and assessment specialist. Disability affects me personally and professionally. It drives me to advocate for an inclusive, diverse, and accessible tomorrow. I’m not alone. There is a rich disability culture online and in person. This Disability Pride Month, I am highlighting the key issues facing the disability community in this Disabled State of the Union address. Let me know what you think! Also available on the Apple Podcast app!

Transcript:

Hi everyone and thank you for watching or listening. My name is Ashley Jacobson. I am a disability rights attorney, who also holds a master’s degree and certification in a disability counseling field. I also am a woman living with physical disability from autoimmune disease. Throughout my life, I’ve been inspired by the work of seemingly fearless advocates. It wasn’t until I became an advocate myself, that I truly understood how necessary, and challenging advocacy can be. It’s not always well received (or initially understood) but in those moments, when you see a change to which you’ve devoted your efforts, we become one step closer to a truly equitable and inclusive world. As someone who has professionally and personally experienced disability, I’ve witnessed just how important disability justice (or inclusion) is for our future. While disability is incredibly common, and perhaps the most normal and shared human experience, it’s still stigmatized and discriminated against in workplaces, community groups, schools, and social settings. Everyone blessed with the opportunity to age will acquire some form of disability in their lifetimes. 1 in 4 adults in the US have a disability—that’s over 61 million potential voters, and includes many of your coworkers, family, and friends. When I tell nondisabled individuals that statistic, they think, “No way.” You, even might be wondering, how is it that possible? Do I really know that many people in my personal life who are living with disability? Disability affects people of every race, gender, socioeconomic status, sexual orientation, and identity. Disability is diverse. Under the Americans with Disabilities Act, the definition of disability is all encompassing to include:

A person living with a mental or physical condition that significantly impairs one or more major life functions (eating, sleeping, grooming, bathing, working, mobility, hearing, vision, etc.); OR

A person who has a record of being diagnosed with such a condition; OR

A person who others regard as having a disability. The lawmakers did an extraordinary thing when they made the definition of disability that broad. They acknowledged that the disability experience itself is as diverse as the disability community throughout our country. They recognized that even without formal diagnosis, you have disability rights. They recognized that inherently and purposely discriminatory environments needed to be made more equitable and accessible.

It’s important to note, that disability rights are recent in our history. I lived before they existed in the widespread fashion, they are in today. And while these rights are a great start, there is a long way to go. Disability includes those with anxiety, ADHD, dyslexia, PTSD, hearing loss, vision loss, brain injury, chronic illness, and many other conditions which far exceed the limited stereotype nondisabled people see when picturing disability. To most nondisabled people, they hear “disability” and think someone using a wheelchair. While that certainly is one group of the disability community, it’s not the whole disability community. Why is this important?

Because if we want to truly address the issues of today, to ensure a better tomorrow, we must have an accurate depiction of who will be living in that tomorrow. We must recognize disabled citizens as part of our present and future. One of the central issues facing the disabled, is the lack of recognition by the nondisabled of disability culture and its value in our society.

A remarkable effect of advocacy and accessible social media spaces, is that people from the disability community have become more organized in their advocacy and more equipped at sharing resources with disabled individuals throughout our country. But advocates have been sharing and fighting for disability justice for decades. They climbed the steps of the Capital, some forced to disembark their wheelchairs to climb on hands and knees—because there was no ramp.

They performed sit-ins, protests, and policy reviews. They demonstrated strength, tenacity, and leadership—and in doing so, demonstrated the value of our community.

Yet, parents still fear for their children’s futures when they’re born with disability. They are told by doctors that their newborns will never work, never marry, and never have kids of their own. As a result of this stigmatizing start, kids grow up being told they have “special needs,” because to the nondisabled, the term “disabled” is terrifying and wrong. Parents are, of course, doing their best to adapt to their children’s disabilities—but when we sugar coat the term “disabled,” we’re teaching children to hide their conditions from others, to shield the world from their differences, and to pretend to conform to a nondisabled experience. Even more damaging, is that we aren’t teaching them that disability is normal, that their disability has certain characteristics to which they can accept and adapt, and that people with disabilities have value.

One of the reasons the disabled haven’t been seen as valued members of our society, is because the unemployment rate for this population is extraordinarily high (nearly 80% of people with disabilities were unemployed in 2020 as opposed to around 40% for the nondisabled, according to the Bureau of Labor and Statistics) [cite: PERSONS WITH A DISABILITY: LABOR FORCE CHARACTERISTICS — 2020 (bls.gov)].

This is a result of two main things: discrimination in the workplace, and aging. One of the largest populations in the disability community, is the elderly. But when it comes to employment–

If you talk to almost any disabled person who is capable of and trying to maintain employment, of which there are many, you’ll hear horror stories about discrimination they faced in hiring practices and once hired on the job.

People are denied interviews once they disclose a disability and they’re denied accommodations once they accept a new job.

For many, this is why disclosing a disability is tremendously nerve-wracking. It’s also one of the main things on which I counsel my clients.

They have to prepare, sometimes in excruciating detail, how they choose to disclose; if or when to disclose; where to disclose; and to whom they disclose. Each time they interview, they’re thinking about these factors, and bracing for the discrimination that so often follows.

And, once they get the job, they’re bracing for discrimination in the form of denied accommodations, rude comments, unjust job evaluations, and discriminatory firings.

You might be wondering, what the heck are accommodations? Under the ADA, disabled individuals have a right to reasonable accommodations in the workplace, in schools, and many other places. This could include adapted tools (weighted pens, larger text, additional time on tests in school, access to medical equipment, access to communication equipment, assistive technology, etc.). But despite the ADA, employers and professors deny accommodations every day.

I’ll give you an example:

One of the symptoms of my disability is hand tremors. In law school, I needed to type my exam essays, rather than write by hand, because I can type at a more reasonable pace. I’d studied for hours, and I showed up to the exam room with my laptop. In order to log into the exam software, I had to have an internet connection. For some reason, that room would not allow my computer to access the internet that day. The accommodations coordinator said, “Well, can’t you just write this one time?”

When I asked to use the school’s other testing room which had an open desktop computer specifically set up for students to take exams, they said I couldn’t because I told them I’d use my laptop—not knowing the internet wouldn’t work in my testing room that day. There were two empty desktop computers in rooms set up for testing, and they forced me to hand-write. I spent the entire time slowly etching out my essay by hand. With two minutes left, I had to guess on every single multiple-choice answer and just hope for the best.

After, I notified the professor, the deans, and the accommodations coordinator that I was denied my accommodation. One dean said to my supportive professor, “Well why should she get special treatment? She’s probably just complaining because she didn’t do well.” What he didn’t know, was that I received the highest score in the class. I had literally guessed all of the multiple-choice questions correctly. Then, he used my “success” as a reason to not address the problem– “If she did well, what’s she complaining about?”

2 takeaways from this story:

Disability accommodations are a right under the law. They are not determined unnecessary because someone happens to survive without them because of luck or any other reason.

Disability accommodations are not “special treatment.” Disability rights laws were created because these environments—schools, workplaces, etc.–were proven to be inherently discriminatory and inaccessible spaces. Accommodations are the after-thought in making spaces accessible for people with disabilities. And, they’re essential until our society has remedied the discrimination in these environments.

But I didn’t just experience this during law school. When I sat for the bar exam, I had to apply for my accommodations to be approved, months in advance, and they were approved. Yet, when I showed up on testing day at each testing session over the 2-day period for the bar exam in Michigan, the proctors had forgotten to plan to implement the accommodations, and wanted to just throw them out the window, “You’ll be right without them, right?” they said, and I said, “No. Not only will I not be fine without them, they’re my rights. They argued with me for 15-20 minutes at the start of each testing session. For a test that’s already incredibly expensive to take, and stressful to prepare for. And when I complained about the inaccessibility and discrimination at the bar exam, I was again dismissed. “Well she’s probably upset because she didn’t do that well.” When in reality I had passed the exam, but that’s not the point. I passed the bar exam because I had to compensate more than my nondisabled peers. I had to guess correctly in many cases. And I dealt with the trauma of being discriminated against, for the biggest test of my life, for months following the exam. And when I went to report it to the Board of Law Examiners, to the Governor of the state of Michigan, truly, nobody knew who would answer for this discrimination, how it could be fixed and reversed, who we would hold accountable. So one of my goals as an attorney who is disabled, who practices disability civil rights, is to make sure that my profession, the legal profession, doesn’t perpetuate this discrimination for future disabled lawyers. But the issues affecting people with disabilities isn’t just in schools or the workplace.

Another main issue affecting those with disabilities is the climate crisis—and yet, they are so often excluded from consideration in environmental advocacy.

Disabled individuals are disproportionately affected by natural disasters. Over the last couple of years especially, there have been reports of people not having accessible methods for evacuating during wildfires, being abandoned in nursing homes during hurricanes, and undeserving of emergency shelter.

Disabled people are also, in many cases, greatly interested in environmental advocacy. One of the leaders who has illuminated the climate crisis to millions is Greta Thunberg. Greta, though a child at the time, was brutally attacked by grown politicians who highlighted her history with autism, anxiety, and depression as a means to discredit her.

They repeatedly projected to Greta and to the millions of individuals with disabilities around the world, that if you have a disability, you shouldn’t speak up, you shouldn’t have a voice, you shouldn’t be taken seriously.

To Greta’s tremendous credit, she persisted, as often those with disabilities do, in the face of such discrimination. In her movie on Hulu, she talks about this, and about how the idea of her disabilities being used to discredit her is ludicrous because having autism has actually brought her the drive, consistency, and commit to pursue her advocacy.

And yet, as our world is becoming less and less inhabitable for all, it more quickly becomes even less inhabitable for the disabled.

When snow falls, they are stranded in their homes, because there is no sidewalk on which they can safely travel with a cane, walker, or wheelchair.

When hurricanes occur, some cannot be evacuated before the storm, and then after the hurricane hits, they cannot make it to their roof to await emergency personnel who can rescue them.

When the wildfires rage through their communities, their lungs might be more easily affected by the air quality, their personal attendants might decide to evacuate without them, and their attempts to find a shelter with accessible restrooms, beds, or even entrances are fruitless. They are again, treated as an afterthought. Disposable. Unimportant.

The attitude our society has about disabled people being disposable has been horrifically apparent during this pandemic.

As someone living with autoimmune disease, I heard countless politicians, family, and friends remark on how they were relieved that the worst symptoms of Covid only affected vulnerable individuals—the elderly and those with underlying conditions. I am one of those individuals, and I’d hear this every single day—when I turned on the news, when I talked to my friends, and when I logged on to social media.

I also heard medical professionals prioritizing the treatment and care of nondisabled people over the disabled. They literally calculated disabled lives to be of less value in our society.

I admit, there are valid discussions that need to occur during a public health crisis with limited supplies and that tough decisions had to be made by healthcare workers in an impossible position.

That being said, too often, disabled lives were discounted. Regardless of contribution to society, regardless of compliance with social distancing and mask usage, regardless of (in many instances) typical lifespan being equal to that of their nondisabled peers.

Though deemed “vulnerable” to the most severe symptoms of Covid-19, disabled individuals were not given appropriate access to the vaccine. In Michigan, they provided for the vaccination of the elderly (of which of course, there is a large portion of people with disabilities), but for all of those with disabilities under the age of 65, who were not essential workers (and, many couldn’t be essential workers because of hiring discrimination), they were the last to become eligible. Insultingly, the caregivers of the disabled were given vaccines before disabled people themselves.

However, these attitudes are not new. People with disabilities were institutionalized for over a century, through the 1970s, for some conditions that frankly are common and manageable by the individual in everyday life—things like epilepsy, down syndrome, deafness, and low vision. These institutions were not like the hospitals or facilities you see today—they were traumatizing, violently abusive, and neglectful. If you want to learn more, google “Willowbrook Institution.”

But when the de-institutionalization movement “ended,” the institutionalization of the disabled, especially disabled people of color, continued.

As an attorney and advocate, one of the most pressing issues I see facing the disability community today is within our criminal justice, juvenile detention, and prison systems.

A great example of this issue is actually the reason I became an attorney. When I was working as a counselor with disabled adults, I had a client who had a disability that greatly affected this person’s speech and vocabulary. One day, my client was mugged and called the police. When they arrived, instead of correctly assessing that my client had a disability, they believed my client was under the influence and disorderly.

My client was arrested, and had signed a plea deal with a forever charge on their record all within a couple of hours. This client is kind, hard-working, and cares for their family—but simply called the police for help and was arrested because they didn’t understand disability. I signed up for the LSAT and became a lawyer because I saw this happen far too often.

People with disabilities are being falsely arrested, wrongfully convicted, and institutionalized in prison at alarmingly high rates. 30-40% of adult inmates have documented disabilities, and without a doubt, there are many more who were never properly assessed that make that number much higher.

Police departments report openly that most of their instances of excessive force are inflicted against people with mental illness, including those with substance use disorders. Unsurprisingly, Black disabled individuals are at even higher risk. Matthew Rushin, Elijah McClain, Duante Wright, Pamela Turner, and many, many more valued individuals with disabilities were incarcerated or killed at the hands of the police. But adults are not the only ones affected by this massive problem.

Children with disabilities, especially Black disabled children, are more likely to face harsher punishment in schools and juvenile adjudications. They are also more likely to be reported for “problematic behaviors” that are a result of their disability not being properly assessed or addressed through appropriate services and supports than their white, nondisabled counterparts.

Children facing trauma, disability, and racial discrimination are being assessed incorrectly when the lawyers, CPS workers, judges, and referees don’t take disability into account. There are some that do—but it’s not uncommon that they don’t.

Disability affects every facet of the legal system, every legal area, and truly every facet of our society.

And these are just some of the many issues being discussed in the disability justice movement. The truth is, everyone needs to learn and care about disability advocacy, because anyone can become disabled at any time. When I say this, sometimes people think it’s threatening in nature, because they’re viewing disability as something to fear. While it’s not always pretty, fun, fair…disability doesn’t discount the joy in your life, the meaning in your work, the importance of your presence.

If you are listening to this, and you have a disability, please take this in:

You have value. You have power in your vote. You are worthy.

If you are listening to this, and you don’t have a disability, hear this:

We welcome you to our causes. There is space for your allyship. If you’d like to learn more about the disability community, reach out to me. Search the hashtag #DisabilityAdvocate on social media. Head to my website jacobsonlawandadvocacy.com (also @JLAfirm on Facebook), and my personal but public Instagram page @ashleybjacobson (where I share tons of resources).

Thank you.

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