After 30 Years the ADA Leaves People with Psychiatric Disabilities Behind
Héctor M. Ramírez
Content notes: suicide, suicidal ideation, hospitalization, forced treatment, violence
I have lived in the beautiful golden state of California for most of my life, and for more than 25 years, I have lived in Los Angeles. I was diagnosed with Autism when I was four years and spent part of my early life institutionalized in the Camarillo State Developmental Center and State Mental Hospital, you can say I am part of the “pre-ADA generation.” But because of disability civil rights laws like the Rehabilitation Act of 1973 and the Lanterman Developmental Disabilities Act, I was able to finally fight for my right to go back to my family and into the community. The ADA passage made it possible for me to get an education and reclaim my life and my future. But only after having to fight for my full identity as a disabled person with all the same rights and privileges afforded to other disabled people under the ADA.
I am Chiricahua Apache and Mexican, and I was the first person in my family to graduate from high school, and the first one also to go to college. But it was during this time that my psychiatric disability developed. While in college, I discovered that most universities and colleges did not offer any disability accommodations to people with psychiatric disabilities. And if you took medication to help with the many challenges that can come with psychiatric disabilities, schools would deny us accommodations because these side effects were caused by medication that “we choose” and could go away if we just stopped taking these medications. Like many other people with psychiatric disabilities, I had to drop out because I needed these medications to stay alive. Having to give up my hopes for a university degree and any expectations for sustainable employment left me feeling once again like I had no place in society. As an Autistic person, I could access many services from my regional center. Still, as a person with a psychiatric disability, I now had to battle additional stigma and discrimination not only in society but within a mental health system who did not see me as a disabled person—just one more mentally ill person with no prospects or hope for recovery or even validation of my humanity.
As an Autistic person, I struggled and was denied necessary disability accommodations to get essential mental health services and ended up again having to be institutionalized in modern-day mental health hospitals and had to rely for help from the public mental health system when I got out. For me, that meant the Los Angeles County Department of Mental Health, the most extensive public mental health system in the United States. Here I found many of the same people I had previously been institutionalized with as a child, but because I was Autistic, I had better outcomes earlier than they had because society recognized my disability identity. I was able to be afforded better services and human dignity, which my fellow peer with psychiatric disabilities had never been afforded when state mental hospitals and state developmental centers started closing. But now that I was perceived as just being mentally ill, I face the same fate as them: I was discriminated against at job interviews, fired from work because of stigma. I ended up homeless on the streets of Los Angeles with so many of my peers, was beat up by the police because I was perceived as dangerous and unstable, I was sexually assaulted because my abuser knew people would not believe when I asked for help, and battled for my civil rights as the county pushed conservatorship proceedings to take away the rights I had fought so hard throughout my life to regain.
According to the Centers for Disease Control and Prevention, 26 percent (one in 4) of adults in the United States has some type of disability. As we note the 30th anniversary of the Americans with Disabilities Act (ADA), we must address why most people with psychiatric disabilities still have not had access to the same type of benefits and protections that most people with disabilities have under this civil rights law. There are three reasons: 1) the lack of enforcement of the law, the non-apparent nature of psychiatric disabilities, and lack of education in society to recognize that people with psychiatric disabilities are part of the broader disability community.
Signed into law in the last century, the ADA is one of several civil rights laws prohibiting discrimination against people with disabilities. Since its original signing in 1990, it has been amended once to clarify and expand its definition of disability. The overall purpose of the law and the 2008 amendment has been to make sure that people with disabilities have the same rights and opportunities as everyone else. The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals based on race, color, sex, national origin, age, and religion. It is supposed to guarantee equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, telecommunications, and all public and private places that are open to the public.
However, the lack of enforcement agents for the ADA has been an ongoing problem that has resulted in the slow progress of disabled people in obtaining employment, sustainable housing, completion of higher education and vocational training, and self-determination. In the last three decades, disabled people have had to rely on stressful, lengthy, and often costly legal remedies to assert their rights under the ADA to have their necessary accommodations and or environmental changes-and even then only for the few who can obtain legal assistance to do so. But decades of litigation and education have helped society understand its responsibility to address access issues such as providing wheelchair ramps, alternative formats like braille and large print, closed captions, ASL (American Sign Language), and service animals. However, because of the non-apparent nature of psychiatric disabilities, those of us who live with them have experienced significant health disparities trying to obtain the same necessary disability accommodations and protections under the ADA.
Psychiatric disabilities are prevalent in society and very easily misunderstood. The National Institute of Mental Illness reports that “mental illnesses are common in the United States. Nearly one in five U.S. adults live with a mental illness (46.6 million in 2017). Mental illnesses include various conditions that vary in degree of severity, ranging from mild to moderate to severe. Two broad categories can be used to describe these conditions: Any Mental Illness (AMI) and Serious Mental Illness (SMI). AMI encompasses all recognized mental illnesses. SMI is a smaller and more severe subset of AMI.
For reasons of insurance billing, progress in medical research, and ethnocultural variations, current terminology like “mental illnesses,” “mental health,” “brain disorders,” and even “mental hygiene” have resulted in numerous failed treatment variations and wrong diagnosis that can take decades to correct. The interchangeability of these terms has made it harder for people and society to identify people with psychiatric disabilities as “people with a disability” and, most importantly, what accommodations we might need, especially as many of us also have more than one disability. The lack of unified terminology and intentional clarification has allowed society to impose a stigmatizing perception that people with psychiatric disabilities are dangerous, violent, and have reduced mental capacities. This institutionalized stigma has hindered the general population’s ability to recognize the importance and benefits that people with psychiatric disabilities offer to society. Furthermore, it is one of the primary reasons why so many people with psychiatric disabilities are experiencing unemployment, homelessness, and incarceration.
Now because of the COVID-19 pandemic, most Americans are experiencing isolation, depression, anxiety, substance abuse disorders, domestic violence, and suicidality at unprecedented high levels. The high level of unemployment, poverty, risk of loss of home are resulting in a new multigenerational wave of COVID-19 related disabilities. Not only are we in the midst of a COVID-19 pandemic, but we are also in the middle of a deadly new mental health pandemic.
People with psychiatric disorders need special accommodations to deal with some of the typical symptoms that we experience. Nevertheless, most of us do not know what these accommodations are, how to ask for them, and how to advocate when we can’t obtain them. Many of my peers are not aware that they may have hearing loss because of the medications they take and will often experience many misunderstandings that impact their relations, limit their ability to communicate effectively and express their needs. Many mental health clinics are loud and crowded and for many of us who have sensory processing disabilities, it can be a significant struggle to get needed services in these places.
Many of us have experienced violence and abuse by family members and people in authority positions, so when we go to clinics that are staffed by armed law enforcement, it makes the whole setting a very retraumatizing experience. For many American Indians, Latinx, LGBTQIA2S, and other historically marginalized and abused communities, we have real reasons to be paranoid of public health systems that have taken us from our families and subjected us to abuse under the veneer of compassionate help. For many cultural and ethnic communities having a disability, identity means that society can also oppress and abuse us more. The intersections of gender, sexual orientation, economics are more ways in which dominant culture can justify violence and death on us, our families, and communities. But our disability identity as a protected class can offer us some protection, but only if we have the necessary education to yield some of the few but powerful rights under the law.
People with psychiatric disorders may experience a wide range of constellations of symptoms, most of which are not specific to any one psychiatric diagnosis. These can include heightened anxieties, fears, suspicions or blaming others, marked personality change, confused or disorganized thinking, strange or grandiose ideas, sensory perception challenges, difficulty concentrating, difficulty making decisions, problems remembering things, extreme highs or lows in mood, denial of obvious problems, resistance to offers of help, and thinking or talking about suicide.
Because of such symptoms, we may also need accommodations to help us screen out environmental stimuli. For some of us, it can be challenging to block out sounds, sights, or odors that can interfere with our ability to focus on tasks. Some of us may even experience temporary or a long-lasting limited ability to tolerate noise and crowds. Some symptoms also contribute to difficulties sustaining concentration, restlessness, shortened attention spans, distraction, and difficulty understanding or remembering verbal directions. Such functional limitations can make it harder to handle time pressures and multiple tasks, and for some, our ability to tolerate interruptions may be limited and or fluctuate. Symptoms can also impact our ability to interact with others as some of us may find it difficult to get along with others, have difficulty interpreting and reading social cues. Because of past or perceived experiences, we may have problems dealing with authority figures, responding to negative feedback, difficulty understanding, and correctly interpreting criticism. Responding to change can also be difficult, especially as we try and cope with unexpected changes in our lives.
However, because the majority of people have historically developed their psychiatric disabilities in early and later adulthood, most people are not aware of their protected legal status nor the types of accommodations that they may need and are entitled under the law to request. Such accommodations can include safe spaces, peer services, cultural and ethnic-specific treatment options, and disability advocacy-because advocacy is actually part of wellness. Some folks don’t even know that they have a right for a second opinion on diagnosis and treatment options. And despite social stigma towards mental illnesses, most people with psychiatric disabilities don’t know that their psychiatric disability does not need to be cured or treated because there is nothing to cure or fix. In terms of forced treatment and institutionalization, the COVID-19 pandemic has made it so clear how many people in society who are engaging in public protest have more rights to endanger their lives and those of the general society than people with psychiatric disabilities who for no fault of their own cant even get the help they seek and want because of lack of disability accommodations. The right to fail, make mistakes, and be human has never been more apparent for all disabled people now as nondisabled individuals have put the lives of so many at-risk with deadly outcomes to them, their families, and others as they go out in groups not wearing masks and not following physical distancing requirements.
Many of us also have secondary medical disabilities associated with treatment options such as diabetes, heart conditions, weight gain, permanent vision & hearing impairments, strokes, renal and hormonal disorders, as well as a variety of cognitive impairments. For those of us who already have other types of disabilities (intellectual disabilities, cognitive and learning disabilities, vision impairments, deafness/ hard of hearing, wheelchair user, autoimmune disorders, etc.), this means that we frequently find ourselves having to assert our disability needs in a setting that not only struggles to provide the necessary ADA accommodations for our existing disabilities but also struggles to understand how to provide accommodations that meet my psychiatric disability needs. After years of taking psychotropic medications, the side effects of many of these medications have caused me to develop permanent hearing loss and vision impairments. This is something that my psychiatrist never told me it could happen. Now I have to utilize ASL, CART, and closed captions to understand what people say in person, on the phone, on TV, and remotely over the computer. The vision impairment has robbed me of my night vision, and I can’t drive or walk about safely when it’s dark at night.
As we move forward with the 30th celebration of the ADA, there have to be intentional efforts to ensure that people with psychiatric disabilities are afforded our identity as people with disabilities AND the rights and protections under the ADA and other disability civil rights laws. As most Americans deal with the mental health trauma, grief, despair, and abuse that the COVID-19 pandemic has imposed an all of us we need to ensure that education about psychiatric disabilities is available in all education settings, workplaces, health care institutions, and as many places in society so that we all have the necessary disability education and knowledge to get the necessary disability accommodations to survive this pandemic and to be able to thrive with everyone else. A place where all people with psychiatric disabilities can have mindful employment and access to housing. Where nursing homes, jails, and prisons are no longer the new warehouses of disabled people. A place where people with psychiatric disabilities don’t have to find refuge out in the streets, homeless, unsheltered because it is safer out there when in a society where we are not afforded our basic human rights.
After years of fighting to assert my multiple disability identities, I have been able to harness the legal and civil rights of the ADA and was able to go back to school with the necessary accommodation and not only became the first person in my whole family to graduate from college but was able to go pass graduate school and finally obtained a terminal science degree with a Ph.D. in Neurochemistry. I live in my own home with my family. And just like everyone else, I am trying to survive this pandemic. But I was only able to do this because of the hard work and sacrifices that disabled advocates have done and continued to do even as you read this. That is the legacy of the ADA and the continuation of the unfinished work of many of my disabled peers.
Héctor M. Ramírez is a Chiricahua and Mexican person in Yaanga, Tongva-Los Angeles, California. He is an Autistic person with a psychiatric disability and is hard of hearing. He is a life long disability rights advocate focusing on the intersections that impact disabled people, families, and communities. He is a formerly institutionalized person and a consumer of the largest public mental health system in the country-Los Angeles County Department of Mental Health. He is the first openly gay person appointed to the Los Angeles County Mental Health Commission, a board member of Disability Rights California and the National Disability Rights Network.
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