In 1977, my darling first born child received a diagnosis of “developmental delays of unknown etiology.” Though I was a nurse, and it only confirmed what I was seeing, the diagnosis scared me. Could I help my sweet baby girl? What did she need? Will she have a good life? Almost immediately, I started gathering information and sticking my nose into unwelcoming places. It was easy to see that the world was not ready for her. I knew I had to do something, but what?
As it turned out, 1977 was a pretty lucky year to be diagnosed with a disability. Section 504 of the Rehabilitation Act, the first civil rights law for people with disabilities, was signed into law in1973. In 1977, after fiddling with the regulations that would give the law its legs, then Secretary of Health, Education and Welfare (HEW), Joseph Califano, refused to sign the regulations.
Disability rights activists took the streets in 10 cities on April 5th. The San Francisco HEW Office found that 150 demonstrators had left the street and began a 26 day sit-in, refusing to disband unless Califano signed the regulations. He caved, the regs were signed and the disability rights movement set a record for the longest sit-in at a federal building. That is when I first learned there was a thing called a “disability rights movement”.
1977 also saw the entitlements in Public Law 94-142, the Education for All Handicapped Children’s Act [i] come into effect. It declared that every child should have access to a free appropriate public education. The number of children that local schools could deny an education to, was zero. And, it was in 1977 my daughter started receiving early childhood services guaranteed to her in the law. I knew this law had the potential to help her, I just wasn't sure what it said, or how to get her what she needed.
But in a few years all that would change. In 1979, the newly formed Disability Rights Education and Defense Fund (DREDF) received a large HEW grant to conduct regional, all expenses paid, four-day intensive training on being a 504 advocate. The trained graduates would help people with disabilities that faced illegal discrimination file 504 complaints, and help them through the process. To apply to go to this training you had to be a person with a disability, or the parent of a minor child with a disability. I was lucky enough to be one of the 100 people selected from five states region covering the upper Midwest. I could hardly wait to go. Little did I know when I left my little girls and husband for
It was a spectacular conference. The agenda was packed full of interesting speakers who loaded us down with reams of paper, strategies, outlines, forms, cheat sheets, resources, and other information to empower us so we could in turn, empower others to act on their own behalf. Each evening I walked up to my room with arm loads of paper and a head full of facts... more confident than the day before that I could be an advocate.
But, it was not the conference information that transformed my life. It was the immersion into disability culture that did it. It was my fellow attendees that taught me in four days what most people never learn. And I learned more than just disability culture, rights and life. I learned about inequality, injustice, and what it's like being part of a minority group. I learned about a world view of inclusion; about what happens when anyone's life is limited; about fairness being people getting what they need, not everyone getting exactly the same; and more, so much more.
Here's how it happened.
Meeting People with Disabilities
Ok, I admit it, I freaked. Up to that point, the only person with a disability (other than my daughter) I knew was a neighbor who had polio. We went to the same school and church growing up. She was a little older than me. We were friendly, but not friends. Standing in the hotel lobby trying to check into my room and sign in to the conference, it seemed like the entire world was disabled, and I had entered the twilight zone. I was one of only three parents selected for the training; everyone else was either deaf or hard of hearing, blind or had low vision, or they had a physical, mental, or psychiatric disability. My most immediate reaction was that I bit off more than I could chew.
The first day's keynote speaker was a dynamic powerful woman who spoke with strength and dignity. She got a standing ovation. During the next break, I eked my way through the crowds to the rest room. The first stall was supposed to be accessible. It wasn't. It was wide enough for a wheelchair to get through the doorway. It wasn't deep enough for the stall door to close.
Men have rules of behavior about where to stand, where to look and when to speak in rest rooms. That's not the case in women's restrooms. We do all our "business", behind closed doors. There are no rules for seeing or being seen on the pot. So, the speaker had to sit there, suffering the indignity of having all of us walk past her while she was forced by architecture to leave the door open. I began to understand access and how it is tied to a person's quality of life and dignity.
Two attendees from
The bus company official left, and then returned. This time he was a little more insistent that they move inside. My fellow attendees were a little more insistent too, "No, really, we're fine. We don't want to go inside."
The third time the official returned he brought reinforcements; ordered them indoors, unlocked their chairs and pushed them both inside where they could not see when the van arrived. The room erupted in righteous indignation. Together, all 100 of us filled out and filed our first 504 complaint. There was also a spirited debate about filing assault charges against the greyhound official.
I began to understand the paternalistic attitudes toward people with disabilities. I learned about the importance of the right to choice, independence, freedom, violating personal space, strength in numbers and power dynamics.
Most of the other participants knew one another, or so it seemed to me. At lunch that first day I hung back and let others take their seats. After most people were at the tables I slipped into an empty seat at a mostly full table. We made introductions. My table mates were people from Champaign and Chicago. The woman to my right and I struck up a conversation. She was curious about why this white bread, suburban, able-bodied woman was there. I was curious about cerebral palsy. My daughter's diagnosis of “developmental delays of unknown etiology” had been changed the month before to mild cerebral palsy.
She had a master's degree in social work, but could not find a job. She shared the frustration of a system that was willing to educate her; she could even get her doctorate, but offered her little hope of employment. I talked about my daughter and asked for advice. She offered it, good and plenty.
She was a fount of information. She talked about how children with disabilities were so protected they never got the chance to try, let alone fail at something. She encouraged me to let my daughter take risks... to be adventurous... to let her break some rules. She encouraged me to do the same. I think she saw my lack of self confidence and as yet untested nerve.
I didn't want lunch to end. She gave me the benefit all her years of experience and wisdom as a person with a disability sprinkled with the professional education that she had bottled up inside her. I cut her meat into bite sized pieces.
When lunch ended, we lingered. The wait staff began clearing tables; we lingered longer. They turned the lights down and we knew we had to leave. We both got teary-eyed; then seeing each others tears, we laughed. She asked why I was crying. I said it was because now I knew that my daughter had a future and if she could be half the person my new mentor was, my little girl would be just fine.
I asked why she was crying. She said our conversation was the first time an able-bodied person thought she had something to contribute and it was the longest conversation she had ever had outside her family. I learned about how isolating a speech disability can be, about state bureaucracy, discrimination, bigotry, the societal view of disability, institutionalization, risk taking, self advocacy, and educational potholes to watch for.
In one of our sessions, some participants' role-played a negotiation for the rest of us to watch and learn. A man who was deaf played the role of the employer. He spoke through an interpreter. A woman with learning disability and the body of a goddess played the employee. The guy was really into being the worse kind of overbearing and obnoxious boss anyone could imagine. It was hilarious. At one point he was listing some positive things that the woman employee brought to the office. He mentioned her long and sexy legs.
The interpreter did not interpret that remark. I knew the deaf man's remarks were edited because the woman with the learning disability told me. She knew American Sign Language and saw her role play partner sign it and heard the interpreter leave it out.
She was furious and so was I. She told the deaf man and he was furious. After speaking to the organizers, they were furious too. We never saw the interpreter again. I learned that even a huge hunky guy with all the charisma in the world, could be taken advantage of by a 98 pound weakling with a patronizing or self righteous attitude. I learned that we must be able to trust the professional who serve us and if they aren't trustworthy, they must go. I learned that it's not enough for the injured party to be indignant; we must all rise up if one of us is injured... I learned about solidarity.
In one day I went from being in a twilight zone to being a member of a new family. I still had a lot to learn, but I knew I was in the right place, with the right people at just the right time in my life.
I'm no stranger to sick humor. As a nurse, I used it often. Working in a cancer unit, I had to find ways to unlock and release the stress. Humor was often the key. But I was not used to disability humor. I’d didn't even know that such a thing existed. I nearly fell out of my chair a dozen times before I got used to it.
We were five minutes into the agenda and the director of Access Living, who had done the advance work for DREDF wanted to acknowledge her staff who had worked so hard to make the conference happen. So she said to them, "Please raise your hands if you have them so we can acknowledge your hard work." [emphasis added]
It was a good thing I wasn't drinking anything while she said that. I would have executed the perfect "spit take". Others in the room, I dare say 97 people in the room, laughed. My face turned red as if I had been slapped. "What in the world was that?" I asked myself as I climbed back into the chair.
When the man and woman who were roughed up at the bus station were telling their story the man started stuttering about every 4th or 5th word. The only way he was able to "unstick" himself was to shout expletives. So, about the 5th or 6th time it happened, some people started chuckling. The man smiled. I was aghast! Are they making fun of him? My head did a Linda Blare type turn trying to identify who would be laughing at a man with a speech impediment. The next few times more people laughed and the woman at the front of the room asked, "Is that how you unstick yourself?"
The man rolled with laughter and responded "HELL YES!" Ninety-seven other people joined him.
Thwappp! What the hell is going on, I wondered as lay (metaphorically) on the floor. I looked around and everyone looked relaxed, happy and festive. For the rest of the man's story, when he had to unstick himself, others shouted expletives along with him. These people are crazy I said while shaking my head in disbelief.
Between manual wheelchair users, the power chair users all with their accelerators set on "rabbit", people who were blind doing cane sweeps, service animals snaking their way in between everyone, walking the halls was tricky. My friend from lunch told one of her friends, a power chair user, that I was afraid someone would run me over. He took great delight finding me in the hall and harassingly ask, "How's hell week going kiddo?" or “hey newbie… no skid marks on your back yet.” He would grin an evil, yet not-too-intimidating-evil-grin-for-a-wimp grin at me and be off to parts unknown.
It was the humor that made me glad the person selected as my roommate brought weed with her. But, by day four, I finally figured out the humor.
Though my radicalization was still incomplete, I had taken a giant leap into activism. When I drove back into my driveway I felt new, reborn. Those four days changed everything.
When I left I was quite and reserved. People who knew me before and still know me think I had a brain transplant in 1979. I was wallpaper. That's how someone defined me once. I blended into the background so easily, I became invisible. People see me now.
I never expressed an opinion before. I was always afraid that people might get mad if I disagreed. Oy, did I ever get over that! IEP meetings for my daughter and other children were never the same.
I never thought about what kind of world I wanted to live in before. After, I was consumed with thoughts about it. Issues of gender, sexual orientation, poverty, hunger and race made more sense to me because I understood the basic tenants equality and the righteousness of civil rights struggles for our citizens. When I can, I work on those issues too. We will not be free until we all are free.
I developed a love of knowledge. Who writes the history? The winners do. I got curious about the other side of the story. I wanted to read American history from the Native American perspective. I wanted to know how African-Americans feel about Jessie Jackson, not what the white power brokers and media pundits think of him. I want adults with disabilities to tell me if and how a program or law is working, not the bureaucrats.
And, I got political. My favorite kick-butt poster is about mental health activism. A large raised fist fills the center of the poster. Above the fist are the words, "Don't get sad, get political." Most of the barriers that minorities face in the US are systemic. But, ask most Americans and they will say that it's because an entire class of people are lazy, or stupid, or some other bigoted stereotype. They blame it on personal inadequacies.
The adage "pull yourself up by your bootstraps and you will be successful" is a myth. It's ludicrous to believe an entire group is at the bottom because they are the problem. Sure, some people are lazy and some people are ignorant. However, it's not because they are a certain color, or have a certain disability, or live in a certain neighborhood, or speak another language. But, it adequately maintains the status quo, and keeps people from trying to change the system.
Becoming a new person changes all your relationships. I made new friends; I lost some old ones who did not like the changes they saw. My husband married one kind of woman and I became another. That wasn't really fair to him, but I could not go back. "How you gonna keep me down on the farm... after I've seen civil rights struggles?" We divorced in 1981.
Was it worth it? For me, of course, the answer is yes. Others in my life might not agree. I know I made mistakes in my relationships with my children. All parents do; but I have tried to learn from each mistake and learned to say, "I'm sorry." I have shared my vision with them and encouraged them to find the passion inside each one of them. I have a very full life, full of love, purpose and excitement. I would not change it for the world. (Well OK, maybe for the world; then I could change it to be what it should be.)
My first born daughter is 33 this year. She works full time for children with disabilities. Last year, she became a home owner and adopted a "Katrina" dog. She attended college, is single and thinking about adopting a child with a disability.
I adopted a daughter when I was single and she was eleven years old. She's 33 years old too. We don't have a relationship. I so wanted to be the person who gave her all she needed. I fell short of that goal and I truly miss her everyday. She's in college in northern California, an environmentalist and brilliant.
My now 30 year old youngest daughter, served in the Navy, traveled the world, and attended a half-dozen colleges. She is an IT professional at a large medical clinic. She and her significant other are expecting their first child, (my first grandchild... It's a girl!!) in December.
And me, I’ve joined the ranks! I acquired a disability that limits my ability to walk and stand for any length of time. I’m lucky enough that I get paid to advocate with and for people with disabilities. Eleven years ago I met and fell in love with a man on the Internet. He's an activist, labor organizer, fighter for the disenfranchised and dreamer of a better world. We're happy.
When I first found myself raising a child with a disability, I would have done anything to clear the way for her. I wasn’t interested in changing the world and I didn’t think my family had much in common with “those” other families.
I was wrong about that. People with disabilities have been my friends, coworkers, lovers, mentors and guides. We have everything in common. If you are a parent of a child with a disability, join disability organizations. Learn from adults with disabilities. The movement wants all of our children to have fulfilling lives of purpose.
[i] After several reauthorizations the name of the law became the Individuals with Disabilities Education Act, what we now call IDEA. That name reflected the shift away from language that was fraught negative connotations to a more neutral, descriptive word... from “handicapped” to “disabled". A disability is a functional limitation or restriction of a person's ability to do something. A "handicap" is an environmental or attitudinal barrier that limits the opportunity for a person to participate fully. Negative attitudes and inaccessible buildings are examples of handicaps.