Thursday, July 26, 2007

Death of A Friendship

We could not name the truth. What used to brag
lies in your cupboard under lock and key.
You care no more
for angels or the underdog,
translating all the terms we used
into intolerance. Your world
now clusters round
the emulation of the rich.

-- Harry Guest

I am in mourning. I am grief-stricken by the death of a friendship. Shannon is still alive, but our friendship died. I feel like wearing dark clothes. I’m in the soberest of moods. I am withdrawn and quieter than usual…

I met Shannon the summer between sixth and seventh grade, 1961… thirty-six years ago. We were inseparable for years. If I didn’t see her at least once a day and talk to her on the phone multiple times a day, I felt cheated.

My family moved from a farm to a brand new subdivision in the city Memorial Day weekend, 1961. Every family in the neighborhood was starting at the same place. We moved-in the same time—enjoyed new streets, new houses and new friends. I’m guessing it took just 6-8 months to build all the houses and move everyone in. There were no established friendships to break in to. There was something very egalitarian about it all.

Our house was the fun house. We had a basketball court, ping-pong table, rec room for the winter and a clubhouse in the summer. The clubhouse was a small barn-shaped two-story shed. My dad ran electricity to it so we could have lights, watch TV and play games there.

All the neighborhood kids flocked to my house. My parents liked the idea of having lots of kids around; if we all were at my house, we weren’t getting into trouble somewhere else. It was not unusual to have 15-20 kids in my yard at dusk, all under the watchful eye of my dad who was usually holding court (he was famous for his stories) on the tailgate of our station wagon parked inside the garage.

The neighborhood was a mix of people who made their living by the sweat of their brow, lower white-collar workers, and military families who worked at a nearby base. The kids rode bikes and played in the dirt piles that occupied the still-being-built homes. After dinner our parents stood outside talking to one another and watched us grow. We became a community. If it sounds like a more innocent time, it was.

Shannon and I were instant friends. We had a lot in common. Our backgrounds were similar. Our families both emigrated from southern Europe. Our grandparents fought for acceptance in a country where swarthy non-English speaking people were restricted to the worst jobs. Her dad was a union railroad man, my dad worked in a union factory. Her mom got her first job at the lunch counter at the downtown Woolworth store and mine started as a stock clerk at the drug store in the shopping center across the street from the subdivision. We were the same age, wore the same size clothes, loved the same bands, and we were both crazy about the neighborhood boys.

I ate dinner at her house nearly every night; my mom worked evenings and her mom was a great (and I do mean GREAT) cook. After dark, no matter what house we were at, we would walk each other half the way home, and talk. We knew each other’s secrets.

I was talking to her on the phone at midnight December 31, 1962 when I got my very first kiss. Her mom would not let her come to the New Year’s bash my parents let me throw. All the gang was there except for Shannon. So, as the clock approached midnight, I picked up the phone on the wall of our rec room, slipped around the corner, closed the door, climbed up on the washing machine and called Shannon. I could not imagine welcoming in the New Year without bff Shannon. While we were talking, a neighborhood boy came through the door, closed it behind him. He said, “Happy New Year” and kissed me square on the lips. He quickly slipped back into the rec room without another word. Shannon and I spend the next two hours dissecting every minute aspect of that one-second kiss. God that was fun!

It really was a magical couple of years. The Ya-Ya Sisterhood had nothing on Shannon and me.

About half way through our freshman year of high school we went off in different directions. But, we still remained friends. During the Viet Nam war she fell in love and married a soldier; I was writing Nixon to end stop the killing. There is a scene Forrest Gump movie that always reminds me of Shannon. Forrest and Jenny embrace in the reflecting pond at an anti-war rally in DC. Like Forrest and Jenny, we had our own lives but, we still loved one another very much too.

We both married had kids and moved out of state. As happens in life, we lost touch with one another, but never completely. We sent annual Christmas cards with hastily written notes telling of our lives. For those years, we really knew little of one another. Email changed all that.

We both got computers early on, when few people had them. With email, it was as if the intervening years disappeared. Again, we shared our secrets, our pain and our joys. There is something about knowing someone for a really long time that is indescribably comforting. No awkward moments and no long explanations; we knew one another.

It’s hard to believe that email could kill a friendship, but it did.

After a few years of writing back and forth and a couple of face to face gabfests, I started getting those forwarded emails, full of hate, usually about Cuban and Mexican immigrants, any non-English speaking people, Muslims, Arabs, non Christians, gays, etc. Instead of reading them, I deleted them. My friend could not be a hate monger, she just wasn’t thinking about how awful these forwards are, I would tell myself. She and her husband are good union folks. They know working class struggles. They would not blame those with less for the world’s ills. She’s a good person.

As the standard of living for the middle class shrunk, the religious right was winning the war to move the country to the right. Shannon’s personal emails came less often and the hate-mail forwards more often. I let my husband deal with them, I could not. I was still in deleting mode. I did not want to know. Shannon was as close as a sister. Once in a while I would peek at a forward and then quickly delete it, feeling sick to my stomach.

My husband, Mike, and I are involved in progressive politics and recognize that this is the first time in our history when people with less get blamed for the country’s ills. The problem, as the right defines it, is with immigrants, welfare queens, poor people, non Christians, and non English speakers.

For example, one of the more mild forwards was a rant that 60-Minutes’ in-house curmudgeon, Andy Rooney supposedly delivered. The anti-PC email circulated was a self-righteous, mean-spirited rant about minorities and the evils of political correctness (the simple act of choosing using words that have neutral connotations). The whole thing, every single word of it, was never uttered. Another fact less urban legend designed to separate and disenfranchised the classes.

Rooney disavowed it. It’s been attributed to George Carlin, Dennis Leary and Ted Nugent. They all disavowed it too.

Shannon said she saw Rooney deliver it. We sent her the link about the hoax. She said she was sure she remembered Rooney saying those things. That’s the thing about hate. It clouds your judgment and blurs your vision. It allows you to see only what you want to see even if it isn’t there.

Shannon and my husband sparred about many of her forwards. I tried to stay clear. This was my friend of 36 years. We grew up and old(er) together. We went through menopause together for crying out loud.

Finally, I could no longer ignore those emails. I wrote her and said that I loved many of the very people she hated and encouraged others to hate in her forwards. That I felt I had to end our relationship, take a principled stand against hate. I asked her to no longer write me.

Her email back was angry. She was understandably hurt and confused. I thought it would be. She really didn’t understand what I was saying, or she just wanted one more chance to talk badly about people knowing it would hurt me. I’m really not sure which it was, but it didn’t really matter. It was over. She agreed not to write.

After nearly a year, she began writing my husband. She wanted to know if we could find a way to reconcile. Mike, very gently brought up the subject of reconciliation with me. I didn't see how it could happen. A little later I got a snail mail card asking if we could see if we could, “agree to disagree”. She promised never to send another forward.

Was that possible? Could we reconcile? I struggled for a few days about it; but problem was not about sending me forwarded emails; the problem was she believed them. Forwarding them was a symptom, not the illness. Could I agree to disagree? No, I could never agree to it. I emailed her back and said that. She responded one more time, with more hate for the same people I cared about.

But I didn’t read her last response. I was pretty sure I knew what it said. I asked Mike to read it; he confirmed my fears and deleted it. At my request, he emailed her back to say that I was done. No more.

Most whites don’t want to think they are racist. They often say they are color blind. That they don’t prejudge people; then in the same breath they say something like, “But those illegal immigrants are rapists and child molesters.” Glumping all illegal immigrants into that category IS racist and bigoted.

I have no doubt that some people crossing the border are rapists and some are child molesters. Some people who immigrant from Great Britain, Ireland, Canada, Australia, Italy and Poland are rapists and child molesters too. There is a portion of the population anywhere and everywhere that are perverted sexual criminals. But, brown skinned people are easier to pick out… and easier to hate.

I will never understand why working class whites are so willing to believe and act outside their own self interests. Why is it that they, with their white skin privilege, believe they have less in common with the black or immigrant janitor who sweeps the floor in the building where they work, and more in common with the man who owns the company, up on the 23 floor with his multi-million dollar salary, stock options and bonuses? The only way I can answer that question is with this song/poem.

Only A Pawn In Their Game
Words and Music by Bob Dylan

A bullet from the back of a bush took Medgar Evers' blood.
A finger fired the trigger to his name.
A handle hid out in the dark
A hand set the spark
Two eyes took the aim
Behind a man's brain
But he can't be blamed
He's only a pawn in their game.

A South politician preaches to the poor white man,
"You got more than the blacks, don't complain.
You're better than them, you been born with white skin," they explain.
And the Negro's name
Is used it is plain
For the politician's gain
As he rises to fame
And the poor white remains
On the caboose of the train
But it ain't him to blame
He's only a pawn in their game.

The deputy sheriffs, the soldiers, the governors get paid,
And the marshals and cops get the same,
But the poor white man's used in the hands of them all like a tool.
He's taught in his school
From the start by the rule
That the laws are with him
To protect his white skin
To keep up his hate
So he never thinks straight
'Bout the shape that he's in
But it ain't him to blame
He's only a pawn in their game.

From the poverty shacks, he looks from the cracks to the tracks,
And the hoof beats pound in his brain.
And he's taught how to walk in a pack
Shoot in the back
With his fist in a clinch
To hang and to lynch
To hide 'neath the hood
To kill with no pain
Like a dog on a chain
He ain't got no name
But it ain't him to blame
He's only a pawn in their game.

Today, Medgar Evers was buried from the bullet he caught.
They lowered him down as a king.
But when the shadowy sun sets on the one
That fired the gun
He'll see by his grave
On the stone that remains
Carved next to his name
His epitaph plain:
Only a pawn in their game.

As long as we working and lower classes fight one another, we take our eye off of the 20% who own 83% of the wealth. They, not poor people, are the major source of society’s ills.

That is why I’m mourning. It will be a long time before I’m over it.

Sunday, July 22, 2007

Little Dreamers Need Big Role Models

I was a teenager in the 1960s; it was a time of great solidarity for women. We encouraged one another not to accept the limiting roles that society had for us. We wanted to expand our roles and be considered equal with men. We wanted respect for our contributions to society. We wanted to be the athletes, not just cheerleaders.

Naturally after I had children, I wanted them to have the good strong women role models I didn’t have as a child. As a youngster I knew very few women who could take care of themselves; my daughters would be different.

I was a one woman rah-rah band who wanted them to believe they had what it takes to do just about anything. (For them I would be the cheerleader.) They saw a woman pediatrician; My OB/GYN and general practitioner were women. We went to a female accountant and dentist. We read Maya Angelou’s poems; Alice Walker’s, The Color Purple and watched Billie Jean King on television. I talked about Eleanor Roosevelt, Elizabeth Katy Stanton, Margaret Sanger, Sojourner Truth and other women of distinction.

One particular moment stands out when I think back on those days. I was watching a movie with my girls. One scene was of a woman getting the better part of a man in a Kung Fu fight. My youngest daughter turned to me and said, “I love it when women do that!”

Yeah, I thought. They are getting it.

I am not only the mother of daughters; I am the mother of a child with disabilities. I didn’t want gender or disability to limit her dreams. "If you want to be a [insert childhood dream], I think you can do it”, became my mantra. “Be a fire fighter? That’s very cool. I think you can be anything you want to be.”

This attitude, however, made (and probably still makes) special educators nervous. I received frequent lectures about aiming too high. They said things like, "Unreal expectations about your child’s potential are harmful to her." "Get your head out of the clouds and come back down to the real world. Get some real expectations."

Dream Big for Children with Disabilities

Parents of children with disabilities get this all the time. Fortunately, I found the antidote. Feel free to use it any time. When educators or, unfortunately, some family members, said something like that to me, I took a deep breath, pointed at my husband, and said:

When he was growing up his parents were sure that he would become the president of the United States, or a famed neurosurgeon, or some equally prestigious profession. No one… not one educator said to them, “I think you’re aiming a little too high, there’s no way this kid is going to be anywhere close to that.” No, they just smiled. My in-laws changed their lofty dreams when they saw him excel as a tall crane operator. They didn’t see it as a parental failure, or that their child had somehow failed. They saw it as a beloved child growing up and taking his own road to adulthood. I will do exactly the same thing with ALL my children.

Get it? Good, let’s move on!

I just knew my attempts to instill that “I am woman hear me roar” attitude would mean my children would have the advantages I never had. However, prevailing thought and societal stereotyping of people with disabilities is so embedded into the fabric of American life, that my beautiful young daughter began to think herself as flawed and her life, limited.

Creating Change
I joined the Decatur Chapter of the Coalition of Citizens with Disabilities in Illinois in the late 80s. I wanted to be more involved in the disability civil rights movement and I wanted my daughter to have adult role models with disabilities. She already had a few… a school counselor, an engineer who went to our church and sang in the choir. They were good, but she needed more. I thought she needed to see more successful women with disabilities, married people with disabilities, parents who had disabilities, boy/girlfriends with disabilities, etc. The chapter was just full of people like that.

There was one small snag… my daughter absolutely refused to go with me to the meetings or any other activity the chapter organized. I would come home from a meeting all fired-up; she didn’t want to hear it. I would take home and hand her literature; she threw it in the trash. I would invite her to go; she made life hell.

After several years of battle, and with no other resources in my arsenal, I evoked the often-hated, but hard to argue with “because I said so” parental clause. It was December and the chapter was having its annual holiday dinner at a cafeteria in the mall. After dinner Jim deJong, CCDI’s executive director at the time, would speak. She was coming to the dinner with me and that was that. As a positive reinforcement, I would let her go shopping for gifts in the mall after dinner.

In retaliation for making her go, my daughter based all her food choices on, “what’s the most expensive [meat, salad, vegetable, dessert] here?” It was a dagger into the heart to every single mother without disposable income.

Once through the line, she picked the table farthest away from her dear old mom. Despite it all, dinner was a pleasant experience. From my vantage point, with the aid of opera glasses, I could see the dark cloud of preteenitis lift once she started talking to people. The program started while we were still eating dinner.

People either loved or hated Jim deJong; almost no one felt neutral about him. I was squarely in the “love him” camp. Besides being easy on the eyes, he was a strong advocate for people with disabilities and a dynamic speaker. His speech was motivating, had a lot of humor, and a little lengthy.

After my daughter finished her five-star meal, I signed to her, “Ok, you can go shopping now. 1( see end note)

I got "the look". It's a special look that only hormonal preteens have for their mothers. She signed back, "IN - A - MINUTE!"

Jim was talking about his vision of disability advocacy in Illinois. I got caught up in it and totally forgot about my daughter. When I remembered I was still a parent I turned to look for her. Surprisingly, she was still sitting there.

I again gave her the chance to go; again she blew me off. After that lovely exchange, she stopped making eye contact and stayed for the entire event.

From the moment her butt hit the car seat, she started talking.


She was unstoppable as we drove home. She was still going strong when we pulled into the garage. She seemed to catch a second wind as we walked in the back door of the house. Turning the light out next to my bed didn’t seem to slow her down. When I woke the next morning, she was still talking.

My reaction: what-a-snot! I kid you not, I was truly offended. I had spent part of everyday of her life telling her all he said and more. What was I, chopped liver? Emotions are rarely rational.

I worked just two doors down from CCDI’s state office in Springfield. So, in the funkiest of funks, I walked into Jim’s office and plunked myself down in a chair. I poured out my heart to him; gave him every sad morbid detail of my tale of woe. About my rah-rah band and all the work I put into parenting. It was the investment of my life. I was crushed. She didn’t believe me… she probably never believed me. Woe is me.

The pity party went on for a good while. When it was over Jim smiled and said, “She can’t hear you say that stuff, because you do not have a disability. 2 You’re her mom. That’s your job to say those things. You have to say that to her. You’re not trustworthy on this disability stuff. I am. She is like me. I am an older version of her. She sees her future through me, not you. It doesn't mean you're not a good mom. You get this, don’t you?”

And, of course I did, even though I did not want to admit it. Men cannot know what it is like to be a woman. A Caucasian cannot know what it is like to be African American. Native Americans should decide if Chief Illiniwek is a racist symbol, not whites.

And that is exactly the reason it is important for children with disabilities to see adults with disabilities. Most people with disabilities are raised by able-bodied parents. I would not have it any other way... a child should be with his/her parents. But, it can be isolating, unless we make sure they have the opportunity to meet adults with disabilities.

I also believe that ALL children, disabled or not, need to see adults with disabilities in positions of power, as members of families, as part of a larger community and world.

As adults with disabilities we need to make ourselves visible to all children. So, get out into the community and volunteer. Don't just volunteer for disability related causes; let the non-disabled world see your talents too.

Without those influences how will children without disabilities know that people with disabilities can be good bosses, employees, friends and spouses? How will they begin to understand that all people should enjoy access to their community or adequate housing, or a way to get into a local tavern to enjoy a drink or six with friends?

And, without those influences, how will children with disabilities get the idea that they too can be big dreamers?


1. She did not speak intelligibly until she was eight years old, after five intensive years of speech therapy. So rather than English, American Sign Language became her first language.

2. Years later I acquired a disability and my perspective changed. I began to better understand that as much as non-disabled people want to think they understand, it is empathy (not that that is a bad thing), not their reality. There were things my daughter went through that I just did not fully understand, until I went through them myself.

Friday, July 20, 2007

The Radicalization of an Ordinary Woman

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 Chicago's McCormick Hotel, that in four short days, my life would be irrevocably transformed.

The Conference

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 Champaign arrived late. They were fighting mad. The organizers gave them the opportunity to talk about their bus trip. When they arrived in Chicago, attendants were on-hand to help them get off the bus and into their wheelchairs. They were waiting for their ride outside the bus terminal, when a Greyhound official came up to them and said they would be better off waiting inside. They said, "No thanks, we're waiting for our ride; it will be here shortly."

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.

Breaking Out

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.

Monday, July 9, 2007

How Do You Know You’re Home?

I was flipping through the channels and I caught Jeff Foxworthy running down his list of, “You might be a redneck if…” Some were funny, some hurtful, and some just plain dumb. Even though I only stopped for a moment or two, I could not get the "list thing" out of my head. For the rest of the day and well into the next, I started creating “Your might be" lists in my head. You might be;

  • left-handed
  • a quilter
  • a vegan
  • a road rage driver


It was probably inevitable that I would create a list of something for people who live in an institution. Like many advocates for people with disabilities, the lives of our brothers and sisters sentenced to institutional life are of great concern.

I define an institution as any place a person lives but did not choose to move into. However, I’ve heard other people say that CILAs (Community Independent Living Arrangements), ICFDDs (Intermediate Care Facility for the Developmentally Disabled), or other living kinds of living arrangements are not institutions. Since I've never lived in an institution, I don't know what it's like exactly; but I have lived in a place of my choosing and I do know what that is like.

People with disabilities have every right to live in the community of their choosing, with whomever they chose to live with and for as long as they choose. Unfortunately, many people with developmental disabilities that is often not the case. As it stands now, if you leave the nursing home or other institution, the money paid to the facility to provide your care just stops, as does any services you received while there. It’s a shameful system.

But there is hope. There is movement afoot to change the way money flows so that it follows the person to whatever setting they live in. So, the money that was paid to the institution would follow a person into their home and the supports follow too. All studies show that it is much cheaper to do it this way, not to mention offering the person with a disability dignity and a much better quality of life.

Anyway, I made this list, "You are probably living in an institution if..." Maybe in some small way it will help the debate of what is and isn’t, home.

You are probably living in an institution if:

  • You cannot wear your swimming trunks and a tri-colored plastic inner tube and goulashes because you think you look quite spiffy it the getup.
  • You do not control what you eat and when you eat, and in what order you eat your food.
  • Other people describe where you live by the number of beds in it rather than bedrooms.
  • If the term, “facility” is used inside the doors where you abide.
  • You don’t own at least one DVD you would not want to show your mother.
  • People wander into your bathroom uninvited.
  • You haven’t had sex there (either alone or with someone else).
  • You do not select your bedtime.
  • Someone has to give you permission to add or remove things from your walls.
  • There are times to go to the bathroom.

Can you think of others? Send them to me at and we can include them in future editions.

Wednesday, July 4, 2007

Independence Day

July 4, 2007

Consider these facts:

  • About 2700 people with developmental disabilities live substandard lives in nine state-operated institutions in Illinois.
  • Illinois pays for another 6,000 people with developmental disabilities to endure in private institutions
  • There are 100,000 people in 1,200 long-term care facilities in the state.
  • The Department of Human Services, Department of Mental Health oversees 30 community hospitals with psychiatric units, as well as nine state operated hospitals.

For these people it is July 4th; Independence Day it is not. They are locked into prisons for the crime of having a disability. Independence is a far off dream for them, unless we who have a voice, however small, say it should change.

While there is a lower class I am in it; while there is a criminal element I am of it; while there is a soul in prison, I am not free.
Eugene V. Debs

It’s dramatically cheaper to support people in their homes than it is to imprison them in institutions. They have more independence, hold on to skills longer, maintain relationships with family and community, they have more privacy and dignity when they are in their own home, apartment, or trailer.

Most people in nursing homes and institutions don’t need 24 hour care. They need supports to help them thorough their daily living activities. Tasks like monitoring their medication, bathing, cleaning, mobility and getting adequate nutrition. With the necessary supports people can live quite nicely on their own, or with a few roommates.

All these facts fly in the face of our practice of imprisoning people with disabilities.

Then Why is it Happening?

Paternalism plays a part. Social stereotyping is also a factor. Indifference to others is a feature of it too. But the largest, most deadly dynamic is, of course, money.

  • Labor Unions represent the people who work in state run institutions.
  • Nursing home lobbies are rich and generous to legislators.
  • Hospital administrators and associations sponsor lavish events to maintain the status quo.
  • Warehousing people with disabilities is big business with large profits.

What Do We Do?

We speak out. We act. We take to the streets. Writing legislators and/or letters to the editors has some merit, but is ineffective to create a change in our nation/state’s value systems. We must act.

The Campaign for Real Choice in Illinois works to change the way people with disabilities live and get the services they need. Their core belief is that people with disabilities should live where they want, with whom they want, for as long as they want, with whatever support is needed. Join their list serve and participate in their events.

ADAPT is a national direct action advocacy organization fighting so people with disabilities can live in the community with real supports instead of being locked away in nursing homes and other institutions. Locally there is a chapter in Illinois, Chicago ADAPT. Get involved.

We need larger numbers of people acting collectively. We must be the agitators that rub up against the status quo twisting, pushing, and challenging our way to independence for all.

There will be justice... only when the uninjured are as indignant as the injured. Thucydides, Greek historian

Indignation is long overdue.

Tuesday, July 3, 2007

Chris Benoit

I am a person with an acquired disability. I am the parent of a child who was born with a disability. I have two points of reference about disability issues, and on occasion they collide. And collide they did about Chris Benoit's murder of his wife and their young child who had a disability.

As the parent of a child with a disability I understand the issues that face families. There is a lack of role models, finances, physical resources, educational opportunities for the parent and the child. I understand the stress families face. Sometimes parenting a child with a disability feels like Sisyphus pushing that rock uphill.

As a person with a disability, and a believer in basic civil rights for all human beings, I see it's another example of a parent getting a pass. The rational seems to be that since the child he murdered had a disability... it is a little more understandable; horrible, but understandable.

While my heart aches for the isolation and lack of supports that families face but, it is no good excuse for murder. Still, when I heard Benoit's story about having a child with a disability, I cried for the millions of families who go without the supports they need.

But, 99 44/100 percent of parents who have children with disabilities face the same or greater isolation, less income, fewer physical resources, less respite, etc, and do not murder their children.
Why is it that the murder of a child with a disability is any different than the murder of a child without one? Sometimes parenting any child feels like Sisyphus pushing that rock uphill.

It was my friend Jessica, who slapped the snot out-of, and the sense back-in to me. She walked me out of the parent place and back into my disability rights advocate place. This is murder. That smackdown frustrates me. I want to think that I always view things through an advocate's eye.

However, it does point out that a parent's view may not be in the best interest of their child, or other people with disabilities. It certainly was that way with Ashley X, and countless other decisions that parents make for their children... young and old, disabled or not.

Take a look at this dramatic difference from two views.

When I was a young mother of children with disabilities, I learned a lot from the adults with disabilities I got to know. They encouraged me to let my kids make decisions, take risks, and even to screw up BIG TIME. It is how we all learn; it was how my children learned; and just as importantly, it is how I learn. I'm glad to know that this old dog is still capable of learning.

Two Views

holly lu conant rees is the mother of a child with autism. Read her post.

Now read Dick Sobsey post on the same subject: