From the Periphery: Real-Life Stories of Disability

1

I GOT ANGRY

When Torben hired me as his personal assistant, I had already been engaged as a human rights activist in Amnesty International for several years. Working for Torben gave me a sense of the everyday exclusion that persons with disabilities experience. Many places were inaccessible to a wheelchair user like Torben. He was left out, and I was left out with him.

Nevertheless, I did not think of the inaccessibility and exclusion as a violation of human rights. At that time, it was not illegal to discriminate because of disability in Denmark. It was not until many years later, when I became involved in the implementation of the UN Convention on the Rights of Persons with Disabilities into Danish law, that I understood how disability—just like race, ethnicity, and gender—should be acknowledged as a human rights issue.

THERE ARE AROUND ONE billion persons with disabilities on the planet. That is about 15 percent of the world’s population. In other words, persons with disabilities represent the largest minority in the world. In the United States, the US Census Bureau estimates that nearly one in five persons has a disability.

Even though people with disabilities constitute a large minority, until recently most societies have not regarded disability as a human rights issue. People with disabilities are poor, marginalized, and invisible. They are still among the most oppressed minorities of the world. Exclusion has historically been—and remains—a central feature of disability oppression. As a group, people with disabilities have been excluded for hundreds of years. And individuals still experience such exclusion based on their disability. In this chapter, Kiel Moses describes how he experienced loneliness when he was in middle school. He didn’t have that many friends: I was the outcast already.

Some people with disabilities have resigned themselves to exclusion and internalized a sense of being less valuable. Some can never get angry enough. Some suppress their anger and do nothing against the injustice. Renee Moses talks about the exclusion of her son some thirty years ago. She says that if there had been a different kind of cultural awareness at the time, if she had known about equality and the language of human rights, she would not have felt like a lone voice in the woods. She would have felt not only enraged but also outraged and would have been more empowered. If her surroundings had been different, she might not have put her head down. She might have acted more forcefully against her and her son’s surroundings. Also in this chapter, Julie Schrager, who has a daughter with a disability, explains how she internalized the intentional exclusion. She says that she gets angry, but only sometimes, because What’s the point?

For some, the poverty, exclusion, degradation, and frustration come to a breaking point. It has made people with disabilities furious. It has provoked new ways of thinking. Getting by no longer seems viable for many people with disabilities. Anger has fueled politicized rage and consciousness and produced activism. In this chapter, Jacky Dorantes explains how she learned that the best way to cope is by being angry.

Disability rights organizations and disabled peoples organizations have evolved all over the world during the last couple of decades. These organizations work to undermine the status quo and to increase control over the things people with disabilities need to survive. They organize the individual and the community. They fight back and insist on gaining control over the necessities of life. They struggle to advance social change.

In this chapter, Marca Bristo explains how she became a disability rights activist: The emotion that I did have was anger. And that served me well. Marca turned her rage into power.

I FELT THIS RAGE

MARCA BRISTO

Marca helped launch Access Living ¹—Chicago’s center for independent living—in 1980 and has been the president and chief executive officer ever since. Marca was one of the first disability rights advocates I met after I moved to Chicago. I am forever grateful that she guided me in my search for a better understanding of discrimination and exclusion because of disability. For this book, I interviewed Marca in her sunny meeting room at Access Living. We had Marca’s favorite drink, Diet Coke, while we talked. There was much smiling and laughter in between Marca’s stern criticism of the stigma and the discrimination against people with disabilities.

I Couldn’t Cross the Street

I was young and out with some friends. They were all musicians. We went to a party, and it was boring. So we left and went out to the lake. I dove into Lake Michigan in water that looked deep. And it wasn’t! So I broke my neck at the C7-8 level, which has caused paralysis in my legs, no sensation below the level of my breast, and some weakness in my arms. I’ve been using a wheelchair since then.

I’m a registered nurse and the first thing that happened was that I lost my job. There really was no initial effort to see whether I’d recuperate. There was no talk of putting me on medical leave. It was just, You’re fired.

That was probably my very first concrete experience of really clear discrimination. The story changed later, but I lost my job. I lost my income. So at least initially, I experienced that commingling of poverty and disability. It was sudden for me. And I did not know whether I’d be able to work again.

I acquired my disability when I was twenty-three, but I had a good education growing up. I had finished college. I was socially acclimated to the world. I had all those skills that were already inherent and, through that, a certain degree of self-confidence. And also, I was shaped by the world around me, because I had been living in the world, so to speak. But pretty quickly, I experienced all the messages that form the basis of discrimination, the stigma or the attitudes that people had toward disabled people, which are still to this day so carefully woven into our culture. They started to descend over me. But I didn’t have any words for it. I just felt, OK, my life’s gonna shrink.

I can’t say I saw it as discrimination when I was going through it. And of course, that’s part of it. The story line for people with disabilities is so deeply entrenched in our culture that you tend to look at certain behavior and just think that it’s normal rather than discriminatory.

From the get-go, when I was in the hospital, they would take me out in the community to practice pushing my wheelchair. Right around the rehab institute where I was a patient, there were a handful of curb cuts, but not too many. So just realizing the limits placed on my mobility because I couldn’t cross the street was really shocking. That I started to feel immediately in the hospital.

I had to find a place to live. My house had seven stairs. I didn’t see this as discrimination. I didn’t have a word for it. All I knew was that I was being excluded from where I used to live. And finding a place to live that I could afford was like finding a needle in a haystack. This was before the Fair Housing Amendments Act. My injury occurred in 1977 and the Fair Housing Amendments Act would not come along until 1988. My grandmother ended up giving me enough money for a down payment for the first month’s rent. I got a roommate and we moved into a very expensive two-bedroom high-rise condominium. But even in that apartment, I couldn’t get into the bathroom. We had to take the bathroom door away and hang curtains instead. So finding a place to live was experience number two of discrimination. But again, I thought, I was just having to make do. That was how I experienced it: having to make do. Having to adjust to all of this. The burden is on you to adjust to the world. It never dawned on me that the world had to change. Never dawned on me.

Before the accident, I didn’t drive. I always used the bus. In a wheelchair, there was no way you could get around the city. After I got out of the hospital, Medicaid paid for transportation to get to and from the hospital doctors. So number one, you’re riding like in an ambulance. Number two, the only time you can use it is to go back and forth to medical appointments. So my world shrank. Entirely shrank.

I was in my apartment on the Near North Side. There was a grocery store one and a quarter blocks away. But the building with the grocery store was in between two alleys. The alleys had curbs. It was a busy Chicago street. So the first day, I went to push to the grocery store, I pushed and realized the curb. So I went all the way around the block, which at that time was hard for me to do physically. And then I realized there was a curb on the other side. I could not get to my grocery store without going into the street. Again, I just saw these as things that I had to adjust to.

So you can see how my world shrank. I had been a foreign exchange student when I was in high school. So I really had been practically around the world. I was a world traveler. And now I couldn’t get around the block. I was completely dependent upon my friends to come and take me places.

I got angry. But I internalized it. I just shrank in. At the rehab institute, they would do classes for doctors and others. I would get invited to come in on panels. There would be presentations about attitudes toward people with disabilities. So there was an acknowledgment on the part of that teaching hospital that attitudes had to change. But there was an equal amount of attention focused on helping people with disabilities to accept their disabilities. The focus was on you having to accept these conditions and figure out ways to do the work-around. So of course your relationships with people change because of those dynamics. You need the help. A ride. It influenced everything. But you just figure that you have to make do. Your world shrank. You don’t go to as many places as you used to.

Like I Was Invisible

My friends were musicians, so I would go out in the evenings to some of the clubs. I’d get a pass from the rehab institute and go out to listen to my friends play music. I could get in the clubs but I couldn’t get in the bathrooms. So I’d have to either go out in the alley and pee [laughs] or time my comings and goings to when I’d have to go to the bathroom.

I remember going to those clubs. I was twenty-three—not unattractive. But the men who used to flirt with me would look right through me—like I was invisible. Literally invisible. I’d be sitting there with one of my girlfriends and the very same guys that used to hit on me a month prior would walk right over and ignore that I was even there. Or I would get that paternalistic talk, like, Hey, does that thing . . . ? [Points to her wheelchair.] They’d wanna push my chair and make sound effects with it like I was a little kid in a truck. So the infantilization or paternalism or invisibility, these were the kind of themes that I experienced. And they still run through the collective unconscious of America about people with disability.

I felt dehumanized. I felt like I was never gonna have a boyfriend again. I started second-guessing my sexuality.

It was a shock to my system to have that experience. But I’m a fighting woman. I had a strong sense of self. I was confident enough that I would overcome that stuff somehow. But it was depressing, I guess. I didn’t get depressed. This is interesting. I got angry. So my reaction to all the loss that I was experiencing was that I felt grief. I went through the different stages of grief. I jumped over depression. I never really felt depressed. I had great friends, and they stuck with me. My family stuck with me. I was gonna push through somehow. But the emotion that I did have was anger. And that served me well.

I remember one time while I was still in the hospital, my friends came over and we were going out for a drink. We went to a bar on Lincoln Avenue, accessible bar. I pulled in to the bar with two of my girlfriends and we went up to order a drink. And the bartender said to them, You and you can stay. She has to leave. He didn’t even talk to me.

And my friends said to him, What are you talking about?

He said, I don’t have insurance. She’s an insurance liability.

I was furious and just stormed out. I went outside and burst into tears. I’m not a crier generally, but I could not take it. That rejection. I was so angry. And there was nothing I could do about it. Nothing I could do. There was no law prohibiting it. My friends were still arguing with the bartender, and I was outside on the sidewalk in my wheelchair crying. And this Chicago policeman came up to me and said, Are you OK?

And I said, Actually, no! I’m not. And I told him what had happened.

He said, Come with me.

And we walked back into the bar. He went up to the bartender and said to me, What would you like?

And I told him, A glass of white wine.

And he turned to the bartender and said, This lady would like a glass of white wine.

The bartender just looked at him . . .

But the policeman goes, Oh, on second thought, give her a bottle. And then he said, On third thought, it’s on the house. [Laughs.]

Isn’t that great? Chicago’s finest. So we ended up walking out. We didn’t even have to stay there with our bottle of wine.

What I took out of that was that the policeman validated that what was going on was wrong. But had I not run into that guy, there was nothing that I could have done.

I sucked it up. That’s the best way I can describe it. And inside, I felt things were slipping away. Like, my friends would go places that I couldn’t go. And I just had to stay home. I felt some sadness. But I just internalized it. I think you know this: I’m a recovering alcoholic. I believe I was an alcoholic already by the time I had my accident. But I did not know it yet. I think I have the genetic makeup. I have a strong family history. But I wasn’t in touch with my alcoholism then. So part of what I did was that I used alcohol and drugs to make things more fun and easier. I extinguished some of the feelings through partying. That also fixed some practical issue because my home became sort of a center for people to come over and listen to music and have parties. I think my accident actually fueled my alcoholism because I started to use alcohol as a vehicle to cope with some of the feelings. Again, I only have this with the benefit of hindsight. While I was in it, I thought I was just living out life as best I could. Making do.

In Those Charts, I Saw Unequal Care

The director of nursing at Prentice Hospital saw an article about me. I think of her as my fairy godmother. She picked up the phone and called me up at home and said, How would you like to come back to work?

So this was the same place that had fired me. Something in this person just caused her to do that. Was it charity? I don’t know what it was. What remarkably hit me at this point was to say to her, I can’t work.

I had just been told that I wasn’t gonna be able to work as a nurse. It had already settled in.

But I did go back to work. I was in the sexuality and family planning clinic and I was doing counseling. What happened was that I started to have the paradigm shift. I bring this up because it happened to me as a woman who’d been raised in the era of the women’s rights movement, the civil rights movement, and the antiwar movement. So you might think that I was steeped in all this. Right? My older brother was gay and had been involved in the early, early gay stuff. So I had been raised in that civil rights climate. In some respect, it was remarkable that I never saw my own experiences as discrimination. Until . . . Until I started to see it happening to others.

So here I am, a feminist, now working in this women’s health clinic. What happened was the staff started to refer women with disabilities to me. Keep in mind that this was a family planning and abortion clinic. A sexual health clinic. I was there to do primarily the family planning and abortion counseling. I wasn’t there to do the basic gyne stuff. I began having all these women referred to me and I was like, Why is this seventy-two-year-old woman referred to me?

A lot of the women were no longer sexually active. But something told me to write their names down. So I did that on my desk calendar. I just kept their names. And then on a particularly boring day when I didn’t have much to do, I pulled all their charts and sat down in a room and just read them all—back to back, everybody’s. And that was when I had—I would say—my first transformational moment. Because in those charts, I saw unequal care. I saw page after page of questions not asked. Questions about sex and illness: Are you sexually active? Have you ever had an abortion? Have you ever had a sexually transmitted disease? That was what we were there for. Right? These were not immaterial questions. But the charts were blank. And the pattern was so . . . There were twenty-six charts. And probably twenty of them looked like this. Then I started to read more on the notes. And I read a note saying, The woman left because her Medi-Van came before we saw her. I had this realization: Oh my God! That’s happened so many times. Their Medi-Van would arrive. And we hadn’t seen them yet. But if they didn’t get the ride, they weren’t gonna get home. So we’d send them home unseen. And then I was wondering why they would be waiting all day without being seen. And I sort of put it together that we didn’t have the staff to lift them onto the inaccessible table. So these little pieces started to come through for me.

I remember counseling this one woman who was a seventy-two-year-old woman. She was there for a postop check on a bilateral mastectomy. Why was she referred to me? There’s a good and a bad side to that. Right? The bad was that they had no business medically referring her to me. The good was that they must have thought that there was something I could connect with these women on; something that would be of value. Which today, of course, we call peer support. What I remember about that woman was that she started to cry when I was interviewing her. And I said, What’s wrong?

And she was nonverbal. She had a Ouija board, which is how she communicated. We didn’t have any tech back then. So she pointed the letters out. What she pointed out was I didn’t want the surgery.

And I said, Why did you have it?

And she pointed, No one would listen.

That was the thing. I felt this rage. This sense of injustice. Again, I didn’t have the word discrimination. But just an intuition, This isn’t right!

So I took the charts to my supervisor’s office.

The lesson in this was that I was not really self-identifying with injustice until I saw it in others. It was the nurse in me who was professionally insulted. These women weren’t getting good care. That triggered my activism. Only then—only then did I have this sense of That could have been me!

Nothing in my experience up to this point had told me that I was a member of a protected class that was having my rights violated. I didn’t get it until I saw it in somebody else. And what was so important about that for me was that I was able to then tap into why I was so angry. But only a little. Only enough to say, We have to fix this.

I Didn’t Have to Sit on the Sidelines Anymore

I was sent to a conference in Berkeley on sexuality and disability. It was my very first airplane ride after the accident. And that opened me up to a whole new set of barriers. It wasn’t smooth. But once I got to Berkeley, there were curb cuts everywhere. Right! There were people with disabilities out in restaurants. And some of the restaurants had accessible bathrooms. There was a woman on the faculty of the program who had a spinal cord injury. She was a specialist on sexuality and disability. Not only was she a speaker, she was on the faculty of this whole conference and helped shape it. She was in a leadership role. I was just like, Wow!

I remember the airplane flight going home like it was yesterday. I was sitting on that airplane riding home and what flashed into my head were all the barriers that I’d been experiencing. I couldn’t go around the block. I couldn’t get on the bus. I couldn’t . . . And how they’d figured that shit out in Berkeley. They had curb cuts in the neighborhood. There were toilets I could use. There was a public vehicle that had a wheelchair lift. All this stuff shifted. And I started to realize that the world needed to change.

Also on that airplane, I read this little pamphlet on sexuality and birth control and disability. In the back of it, there was an appendix with section 504 of the Rehab Act. I love to tell people that I discovered that I had rights in the appendix of a birth control pamphlet. For real! The minute I saw that, everything changed. I had a paradigm shift. I had a framework that was flipped around. It was no longer my problem. I was a member of a protected group like my big brother, like African American women who fought for law change. The world needed to change.

Instantaneously, I started thinking, If there’s a curb at the driveway, all I need is a sledgehammer. That was my experience of how it all shifted. It was a complete worldview change. The old saying about the glass half-full or half-empty. You know, you look at the very same thing, but all of a sudden you see it completely different. That was so empowering. Because I didn’t have to sit on the sidelines anymore. And not only did I have rights, I also felt that I had some responsibility.

The second transformational moment was finding out that once I took responsibility, once I had this new lens, I also got to have some power. It was a moment of empowerment when I realized that I had something to offer that the rest of the world didn’t have. I realized that things couldn’t be changed without the worldview that we now know as Nothing about us without us.

I JUST NEVER COULD GET ANGRY ENOUGH

KIEL, RENEE, AND KEN MOSES

I met Kiel’s parents, Renee and Ken, in their large house in Evanston. The house had a warm feel and was full of modern design. It reminded me of homes in Denmark. I talked to Renee and Ken individually on different days. We drank hot tea and spoke about baseball and the excitement of being a Chicago Cubs fan. When I met with Ken, rain was pouring down in Evanston. There was a continuous soft drumming on the wooden porch outside the window.

Kiel and I talked for several hours on FaceTime. I was on my computer, and he was on his phone. He walked me around his apartment in Portland, Oregon. It felt like I was right there with him.

Even though I met separately with Kiel, Renee, and Ken at different times, I built their individual narratives into one comprehensive family story.

Deaf, Blind, Retarded

Renee

When I was in the hospital after delivering Kiel, I looked at him and I said to myself, There’s something wrong with his eyes.

Everybody said, Oh, that’s so silly. He’s an infant.

Well, within a short amount of time, I realized that there was reason to be concerned. He was highly allergic. Indeed he did have problems with his eyes. And he had a right-sided hemiparesis. The initial diagnosis on him from the children’s hospital was that he was deaf, blind, retarded! Which turned out not to be true!

He does have some difficulty with his vision. His right eye . . . I get confused, I have to try to visualize . . . His right eye has limited vision. His left eye was paralyzed and turned outward. He ultimately had surgeries to bring the left eye into the center, but he cannot move that eye. The other eye that he has less vision in does move. But he tends to keep that eyelid down so that he doesn’t get double vision. And he uses his right arm as a functional assist. He still has allergies but way more under control.

Kiel

I was born in 1978. There’s some confusion about how this all went down. But the reality for me was that I lost some valuable time with oxygen. It created some learning disabilities, a visual impairment, and a weakened right side. My parents never wanted to say [laughs] that I have cerebral palsy. But in more colloquial terms, that’s what I have.

I was born into a German Jewish home. My dad is German Jewish. My mom is Jewish. I have a sister who’s six years older than I am. My dad dealt with loss and grieving issues as a psychologist. So he wasn’t so far off in terms of having me. But he was also a career man, and he was in and out a lot of the time. So most of the parenting fell on my mom.

Ken

The impact of Kiel’s birth on me was just so traumatic and so incomprehensible that I not only went into denial, I threw myself into my work. Which is not atypical of a lot of fathers of kids with special needs. For me, it was more dramatic, I believe.

When Kiel was born, I had already established a national reputation as a psychologist who worked with parents of kids with special needs. So all of a sudden, I got a kid with special needs myself. My whole identity felt threatened. A flashback of the history that I had as a child and what my parents went through. So when that happened, something just short-circuited inside me and . . . I . . . couldn’t . . . deal. And I didn’t know I couldn’t deal. So I became an outrageous workaholic. I never said no. And my phone was ringing off the hook to do workshops. I had two full-time jobs. One was faculty at Northwestern University. One was a full-time private practice, which had about 20 percent parents of kids with special needs. The others were people who were traumatized by death, dying issues, and those things. I would get all these calls to do workshops all over the place. And I never said no.

So when you ask a question that says, So what was it like for Kiel when he first went to school? it . . . it touches me in a bad way . . . I have to say . . . [weeps] I don’t know . . . I wasn’t there . . . [Whispers:] Renee took all the burden . . . Because I couldn’t. I just couldn’t.

Renee

I took Kiel to work with me. I was a full-time principal at a school for children who had severe disabilities and had been excluded from the public school. In the school, I had several highly trained staff people who happened to be women. Many of them were getting pregnant, and I had been able to convince the board to set up a baby room and hire someone to take care of the babies. That was how I had agreed to become pregnant the second time. Because I didn’t want to stop working. And the deal was that I would take Kiel to work with me and Ken, who was working in the house, would oversee our daughter being in kindergarten, coming home, having friends. So I went back to work almost immediately.

The Gate Was Opening

Renee

Kiel was enrolled in a Montessori preschool here in Evanston. They were willing to accommodate when he couldn’t keep up with the children if they went on a walking trip. So they had a little red wagon that they would put him in. But other than that, he did quite wonderfully. So when he was about to turn five, I called the school district—the psychologist there was someone we knew professionally—and I said that we wanted him evaluated for public school placement. There was a loooong silence on the phone. And all I could think was, She thinks that we’re totally out of our minds.

Because apparently the community here in Evanston had talked about our child and his limitations. I think the word on the street was that we had this severely handicapped child, and we were not being realistic about what he was capable of. And this call to the public school about getting him into kindergarten was the front end of that train coming down the tracks. But the psychologist came out with a team and they observed him at the Montessori school. I got a phone call from her, and she was all excited. She said, Not only is he going to be able to go to the public schools. I’m not even recommending that he goes into the orthopedic special class.

She thought that he was perfectly able to be mainstreamed into the kindergarten. And that felt to me like a real break in the feelings that I had started to develop about needing to hide or keep a low profile. I mean, it felt like the gate was opening and we were gonna be able to walk through—just like every other family. That we were gonna be able to take advantage of the community and the school system.

So Kiel started kindergarten. We had to keep in touch with the teachers. But things seemed to be going well enough. And academically he was doing just fine. Cognitively, he was right on target. The physical limitations, or the differences that he had, seemed to be in the background rather than in the foreground. There were kids who would come over and he would go to other kids’ houses.

Ken