I Can't Swim, But I Haven't Drowned Yet Notes From a Disability Rights Activist

By Melissa Marshall

In I Can't Swim But I Haven't Drowned Yet, Melissa Marshall chronicles the history of the disability rights movement though her lifetime of disability rights activism. Follow her through high school where she is denied an education at the same time that equal education for disabled people became federal law; onto college where

• Language: English
• Publisher: Melissa Marshall Disability Policy Consulting
• Release date: Jun 29, 2020
• ISBN: 9781951591373

Book preview

Introduction

To people with disabilities and people who don’t have one (yet)

If you are opening this book, you have shown a commitment to learning something about disability as a social justice issue. For that, I thank you.

In the pages that follow, you will find an overview of the disability rights movement from my perspective as a disability rights activist for over thirty years. During that time, I have worked with people with many different kinds of disabilities: members of the Deaf community; people with physical, intellectual, or learning disabilities; people with psychiatric disabilities/mental health conditions; people with chronic health conditions, and autistics.

Much has been written about the history of the disability rights movement; this is not a history book as much as it is a travelogue. My friend and sister disability rights activist Sharon Denson once said that my career trajectory was called a river of interest. She explained that Earl Nightingale, an early motivational speaker, talked about people who have found, often early in life … a great river of interest into which they throw themselves with exuberance and abandon. They are quite happy to spend their lives working and playing in that river. Nightingale went on to explain that river people are often unmotivated by money or other traditional markers of success. The disability rights movement is the river where I work and play. Rather than feeling that I am swimming in that river, I see myself as traveling on a raft, excited to take the journey without steering in any specific direction.

The disability rights movement has brought me to the living rooms of people with significant disabilities who wanted to be independent of their parents; to college campuses that wanted to be more accessible; to probate hearings for people being committed to psychiatric facilities; to interdisciplinary team meetings in forensic institutions for people found not guilty by reason of insanity; to board rooms of corporations that wanted to hire people with disabilities; and to disability rights protests and demonstrations.

The movement even brought me to a law school classroom. As an attorney, I have the professional skills to proceed in my work as a disability rights activist. Those skills include mastering the Americans with Disabilities Act (ADA) and assisting in writing friend of the court or amicus briefs supporting it; developing support networks for people moving out into the community; and learning to conduct highly technical architectural accessibility compliance audits. I have also had the opportunity to develop a broad array of techniques for training, my first love. In my latest venture, I’m working on supporting people with intellectual disabilities in moving into integrated inclusive settings in the community. I don’t acquire a skill set and then look for ways to apply it. I look at what the movement needs and then I learn that skill.

This book can function as a tool for disability rights activists who have specialized in activism for one group of people with disabilities and would like to learn about other groups and how all of the struggles are woven together to form the disability rights movement.

It is also a guide for activists not involved in disability rights. The activist tips throughout apply to all activists, whether for queer people, people of color, women, or any other oppressed group. Consider it a tutorial based on mistakes I’ve made and lessons I’ve learned.

A lot of this book is in memoir form. I usually tell people with disabilities who proclaim that they have been told that they should write a book solely on the basis that they have a disability, that unless you are FDR, nobody cares about your individual story as a person with disability. The reason I’m sharing my stories is because they are intricately connected with the disability rights movement. Having a disability does not make one inherently interesting. I am by far not the most interesting person with a disability whom I know, and to the degree that I am at all interesting, I hope that it is not because of my disability.

An activist is who I am. Think of activism as a lifestyle rather than an occupation. During my teen years, I decided that I wanted to make social change related to disability — not because I am noble, but because being an activist is a large part of what gives my life meaning. Since I love what I do, I find no reason to limiting activism to the workday.

Some of the stories I tell are about oppression experienced by both me and others with disabilities. While I experience ableism on a daily basis, my life is not tragic. In fact, my life for the most part is great. I have been in a fantastic marriage for over 30 years; I have two wonderful biological children and a few others who think of me as their mom, and a job that I love. Dismissing my life as being tragic because I experience the consequences of having a disability would be comparable to dismissing my life as tragic because I’m female and experience misogyny.

Even though I experience ableism, I have a high level of privilege within the disability community because my disability, particularly when I was a child, was mild. In addition, all of my experience is through the lens of white middle class privilege.

I invite you to see how I have sometimes made small changes and often did not. I ask you to laugh with me about the absurdity of having a disability in this world. Mostly, I want you to be aware that the disability rights movement exists and that many people with disabilities, and some without, have worked very hard to enable people with disabilities to begin to realize the American dream. Except for us, the American dream wasn’t so much about having a job and a house with a picket fence as it was moving out of institutions and back bedrooms. While we have come a long way in a short time, I want to share with you some of what it took to get there as well as outline the enormous amount of work that remains. Please don’t see me as an inspiration. I am an ordinary person with a disability who has an ordinary life.

I hope you can use this book to help you become a catalyst for social justice in whatever area calls you. I also hope that, whenever the opportunity presents itself, you will appreciate the struggle of disabled people and act as an activist in some small way. Enjoy your journey on the river with me!

A note about language

As with terminology related to other civil rights movements, the way we speak about people with disabilities has been important and often controversial within the disability rights movement. My philosophy is to respect people within specific groups by using the terminology they prefer. If people within specific groups disagree, I use the term that best embodies my values. For a very long time, many members of the disability rights movement, particularly people with intellectual disabilities, advocated using the term people with disabilities to promote the concept of seeing the person before the disability. Prior to that people with disabilities were often objectified by use of language such as the disabled or the handicapped. After years of advocacy, what is known as people first language, e.g. Jane is a person with a disability became preferred terminology. Currently, many members of the disability rights movement, particularly younger people, use what is known as identity first language, e.g. disabled people. Throughout the book I use a mixture of people first and identity first language. I usually use the word autistic or autistics rather than people with autism, because many autistics prefer identity based, rather than people first language. I use a variety of terms to describe people who have been involved with the mental health system. I hope that you will be tolerant of my language choices and will be aware that language is constantly morphing and can become quickly outdated.

The word retarded has become a slur and is used only in this book only for historical purposes. Intellectual disability is now the preferred term.

Part I

What Are We Fighting For?

Chapter 1

What Is the Disability Rights Movement, Anyway?

Who are people with disabilities?

First, what is meant by disability? The legal definition of disability — people who are substantially limited in one or more major life activities, have a history of such or are regarded as such (42 U.S.C. § 12131 et seq.)¹ — is ambiguous. Hundreds of court decisions have addressed the meaning of those words.

In disability bias trainings, I help people define the term in a more practical way. I ask them what they think of when they hear the word disability. Invariably, they mention someone who uses a wheelchair. When I prompt them, they add people who are blind, people who are Deaf, people with psychiatric disabilities, intellectual disabilities, learning disabilities and autism. When I ask who they know with a disability they will talk about a relative with an intellectual disability, a family member with a learning disability, or someone they know with a mental health condition. They tend not to think of their elderly parents who have a hard time walking, or of themselves if they are middle aged and may not hear quite as well as when they were younger. They almost never mention the time they had a bout with depression. All of these states/conditions are considered disabilities.

A person whom I might describe as someone who has a disability is not the same as one who would identify as someone with a disability, and is definitely not the same as someone who might identify as part of the disability rights movement. Just as being a woman does not make you a feminist, having a disability does not make you part of the disability rights movement.

Prior to the disability rights movement

Before the independent living movement started, numerous disability groups advocated for their rights. Although they did not necessarily see their specific groups as intrinsically connected to other disability groups and did not frame disability rights as a civil rights issues or social justice issue, they improved the lives of disabled people. Sometimes it was in the form of legal advocacy, other times it involved significant persuasion.

Blind people were probably the first group of people with disabilities to push for legal protections. Blind people have held leadership roles in blind organizations at least since the 1940s. The organizing principles of the National Federation of the Blind (NFB) were similar to those of the independent living movement. Dr. Jacobus tenBroek, the founder of the NFB, who was blind, declared that National Federation of the Blind is not an organization speaking for the blind; it is the blind speaking for themselves. ² He called for equality³ of blind people. Where NFB differed from the independent living movement is that it refused to work in coalition with other disability groups⁴.

Deaf people were among the first group of people with disabilities to fight for and receive an education. There was controversy about what kind of education Deaf people should receive and whether or not they should be permitted to use sign language.⁵

Parents of people with what was then called mental retardation — now referred to as intellectual disability — banded together in 1950 to form the Association for Retarded Children (ARC), which later became the Association for Retarded Citizens and is now simply referred to as The Arc. When what is now known as The Arc was started, parents were routinely instructed to place children with intellectual disabilities in institutions and were frequently told to forget that they ever had those children in order to go on with their lives. The parents who started the ARC in their basements and living rooms rejected that notion and decided to develop something better than institutionalization for their children. They wanted their children to remain at home when they were minors and hoped that they could move on to a more humane setting than an institution when they became adults.

These families worked for the rights of their children to education, employment and housing. A lot of what was done in the early phase of the ARC movement might be seen as primitive, or less than inclusive. Some families saw large 16-bed group homes and employment in sheltered workshops as a panacea. What we need to remember is that when compared with the squalor of institutions, these ideas were revolutionary. It is easy with 20/20 hindsight to say that people should have been more focused on community integration, but we need to consider the times. Institutionalization was not only what experts recommended; it was what they advocated for. Living anywhere other than in an institutional setting was a radical idea. A life of institutionalization automatically made employment out of the question. Working in any capacity was almost incomprehensible.

Autistics took a place in the disability rights movement later.⁶ Now, I think it’s fair to say that they are on the cutting edge of the disability rights movement.

The disability rights movement

Like most people who had a disability and were born in the 1960’s, I was oblivious to the disability rights or independent living movement. While I did not learn about it until I was in high school in the late 1970s, the movement has made enormous strides in the last 50 years. People with disabilities advocated for and were responsible for the passage of the Americans with Disabilities Act (ADA), the most progressive piece of disability rights legislation ever enacted in the world; families of people with intellectual disabilities led the battle for the closing of many institutions for people with intellectual disabilities as well as, for the first time, a guarantee of an education for people with disabilities. Once it became widely known that state institutions for people with psychiatric disabilities were as horrific as those for people with intellectual disabilities, the state psychiatric institutions began to close as well.

Through the course of this book we will look at various strands of the disability rights movement, which is actually a series of movements that have emerged over the decades among and for people with psychiatric diagnoses/mental health conditions and people with intellectual disabilities; people who are blind and people who are Deaf; and people who describe themselves as neuro-divergent or autistic.

While disability groups are diverse, we all experience ableism. Webster’s online defines ableism as discrimination or prejudice towards people with disabilities. I have always defined it as oppression based on physical, intellectual, emotional, cognitive, or sensory ability. I view ableism as being analogous to, but not the same as, sexism/misogyny, racism, homophobia/heterosexism and transphobia. Discrimination and prejudice are certainly aspects of ableism, but the phenomenon is much broader and more insidious. Discrimination is when an employer refuses to hire you for a job due to a disability, and prejudice is when someone has a lower expectation of you because of your disability. Ableism, however, includes a multitude of bad behaviors, including the most extreme, as when people kill dependent family members because of their disability, or when governments institute policies based on eugenics —the attempt to eliminate all people with disabilities.

Despite the fact that people with disabilities were murdered during the Holocaust⁷, were targets of the eugenics movement⁸, and are disproportionately murdered because of their disabilities⁹ many non-disabled activists still do not understand ableism as a serious form of oppression.

Group identity should not exclusively center on oppression. There many positive aspects of having a disability; whether it be Deaf communities having native languages; sharing the ability to problem-solve creatively; or the richness of having a life tapestry woven from the fabric of being different. Although disability, like being a woman, Black, Latina or LGBTQ, causes one to experience oppression, it is also something to celebrate. It never means being broken, defective or needing to be fixed.

I have worked in the in the disability rights movement on a cross disability basis. Cross disability refers to the philosophy that people