Rachel Simon's Blog

We are Speaking For Ourselves
Speaking For Ourselves
No one else can do as well
Speaking For Ourselves

This was the chorus I heard as I reached for the ballroom doors, the voices within singing loud and proud. I was a little tired from getting up early and driving to this conference in Harrisburg, but the joy I felt at hearing a hundred fifty voices singing this anthem made me glad I’d decided to arrive early. As the lunchtime speaker, I wasn’t due for a few hours, but I wanted to be present for as much of the day as I could. This was not because the organization was kicking off its annual gathering with a rousing sing-along led by a guitar-wielding songwriter – something that might well happen at public events with a political twist just about every day. Nor was it because this group consisted of grown men and women with intellectual disabilities – a demographic with which I’ve been familiar since my sister Beth entered her own adult years.

It was because this was a conference of self-advocates: individuals with developmental disabilities who are using their voices to fight for their own civil rights.

The group continues to sing:
Once I was afraid to speak
I was lonely I was weak
With a voice so very small
That I had not voice at all

Then I found a friend like me
And another made us three
And we laughed and then we cried
And then this is what we tried

I first learned about the self-advocacy movement about nine years ago. Perhaps because I grew up in the civil rights era and admired Dr. Martin Luther King, Jr., perhaps because of my sister, it always made sense to me that people with disabilities deserved respect and opportunity, the freedom not to be discriminated against, and the right to live outside the walls of institutions. When I reached middle age and had my awareness raised by joining my sister in her favorite pastime, riding city buses, I also came to embrace the idea of self-determination, which says that people with disabilities have the right to make their own choices about their own lives.

But until I learned about the self-advocate movement, I hadn’t recognized that individuals with disabilities could be their own Dr. King. They could form and run their own organizations in which they could advocate for themselves. Maybe they’d do so with a relative or friend at their side, maybe not. But they’d use their own voices – or, when necessary, assistive devices – to speak to legislators, educate the public, wage battles for employment, transportation, and funding, and fight for the permanent closing of institutions.

The national self-advocacy organization is SABE, which stands for Self-Advocates Becoming Empowered.

The organization on the other side of these ballroom doors is the major self-advocacy organization in Pennsylvania. It’s called Speaking For Ourselves.

And I step into the room as the song Speaking For Ourselves reaches its final verse.

We’ve been called by many names
We’ve been made to feel ashamed
We’ve been locked behind a door
But we’ll come outside once more

We are Speaking For Ourselves
Speaking For Ourselves
No one else can speak as well
Speaking For Ourselves
- Speaking For Ourselves, by Karl Williams

If you think that people with intellectual disabilities are, by definition, incapable of political engagement, you should have stood beside me for the next few hours. You would have mingled with these people, among others:

In 2010, Frank Yurick was voted co-President of Speaking For Ourselves. He’s run training programs for Speaking For Ourselves to help people find services, resist abusers, and speak up to enhance their quality of life. He also works for Liberty Resources as an attendant for a person with a disability.

Since 2006, Debbie Robinson has been the Executive Director of Speaking For Ourselves. Debbie once attended a White House meeting with President Bill Clinton, where she told him “When you give talks on TV, you don’t talk about disability issues. You need to bring this up more to the public. We need to hear your voice supporting us and the ADA.” The President said, “You are right. I need to do more on that.”

Sara Wolff is a motivational speaker who has given talks at schools, churches, and business and community organizations. Sara is a law clerk at O’Malley & Langan Law Offices who has organized a buddy walk, made a PSA video, been featured in such magazines as Allure, Glamour, Vogue, Self and Lucky, and serves on three boards. During the course of her work, she has met Barbara Walters, Meredith Viera, and Dwayne “The Rock” Johnson. She is also an aspiring writer who is interested in writing short stories.

Bill Krebs is working with Blue Fire Consulting on a project called Beyond Tokenism, which helps people with disabilities to be truly included on boards of advocacy organizations without being tokens. Bill sees board inclusion as being on a football field with the object of the game being to go from one end to the other getting through defense – and then to score. Bill isn’t afraid to speak what’s on his mind; that’s why his nickname is Trouble.

Jody Saitsky, a strong self-advocate, is Vice President of the Philadelphia chapter, and well-known for her cooking.

Marjorie Bungard is on the Board of Speakings For Ourselves. She is part of the planned advisory committee under the developmental programs, and was appointed by Deputy Kevin Casey. She also started the Mon Valley Chapter of Speaking For Ourselves over twenty years ago.

Karl Williams is the singer-songwriter who led the sing-along at the opening session. His compositions, two of which I’ve included here, are the soundtrack for the self-advocacy moment. He also wrote down the words of Roland Johnson, one of the pioneers of the self-advocacy movement, for Roland’s autobiography, Lost In A Desert World.

There were so many more people I wanted to meet. I wanted to hear their stories, find out about their advocacy work, and just spend time in their company. I also wanted to attend more sessions at the conference – there was so much about self-advocacy for me to learn!

But my sister Beth lives a few hours away, and I’d made a date to visit. We weren’t going to ride the buses; we were going to her favorite restaurant for her favorite ice-cream, mint chocolate chip, then back to her apartment to watch a favorite TV show, Family Feud, while engaging in one of her favorite activities: me scratching her back.

Beth has not gotten involved with the self-advocacy movement, but she certainly lives in a self-determined way.

So I had to leave the conference a few hours before it ended. But I left in high spirits, revved up by the commitment to social justice I’d seen all around me, and the sense that everyone – especially those who might never have been listened to before – deserves to be heard in this world.

And yes, not just by a sister.

But by a celebrity.

A business leader.

A president.

We will stand up for our rights
We will stand and tell what’s true
We will show the world
All that we can do
- People First, by Karl Williams

I worry that I’ll get lost, but she is at my side, guiding me, saying, “Around this corner, down this hall.” I put my trust in her, and we walk forward.

I am a hospice volunteer. Usually that means I visit terminally ill patients in their homes, which might be actual houses, though they might be Alzheimer’s facilities. When I see my patients, I ask what they would like me to do. Sometimes I sit quietly across the room while they sleep. Sometimes I engage them in conversation. Maybe we sit on their patio, window-shopping past their memories.

My role is to serve them. My goal is to love.

People ask why I do it. When they too volunteer in some capacity, I can skip the part of the answer that involves words like “giving”, “setting myself aside”, and “doing unto others”, and move directly to the chain of losses that nudged me toward this specific form of giving. But when the idea of volunteering is foreign to them, either because they have too many other commitments or find the very notion baffling (as one person said to me, “Why would I do anything for a stranger—for free?”), I get stuck in what is only a prefix to the real answer.

I suppose if I had to boil it down, I’d answer this: “Because everyone deserves to die with a caring person beside them.”

“Now,” my own guide says, pausing at the elevator, “up to the sixth floor.”

The hospice movement began in the 1960s, when a British medical social worker, Dame Cicely Saunders, started giving lectures about how she was inspired by a dying patient to think about options besides medical settings where patients could go to die. Then Dr. Elisabeth Kubler-Ross published her famous “On Death And Dying,” which brought the process of dying out of the shadows. Soon a philosophy formed that said dying patients have the right to palliative, emotional, and spiritual care, and to focus on quality of life over cure.

Most people think of hospice as being in its own building, and in some cases that’s still true, though a substantial portion of patients are served in their homes. The agency for whom I volunteer, Compassionate Care Hospice, in northern Delaware, didn’t even have a separate building for many years. But recently, St. Francis, a local hospital here in Wilmington, DE, found itself with an unoccupied floor, and an arrangement was made. And so today, led by Anne, the staff person who trained me in giving, I am visiting this in-patient unit for the first time.

The elevator doors open.

To my surprise, Anne and I step out into a space with carpets and plants, upholstered furniture and sunlight. The effect is more homey hotel than austere hospital, a place not of cure but of kindness. My confusion about our way here begins to recede, a process hastened by my meeting the receptionist, with her gentle smile.

The nurses, too, sense my disorientation. They say hello, and their looks are rich with acceptance. I can be lost, I think, as I shake their hands and learn their names, but they’ll be here with me, letting me feel whatever might feel, being understanding if I should need a helping hand.

Anne takes me through my tour.

The facility has fourteen beds, each in its own room, each decorated with patchwork quilts, living room-style chairs that open into beds for family sleepovers, old-fashioned blinds, earth tones. There is a family room where relatives can watch television, sit quietly, or talk to each other, while their parent, spouse, sibling, or child sleeps. One side of the family room has been specially set up for children, with a small table, chairs, and coloring books.

The families also have access to a full kitchen – complete with cookies and other treats brought in by the staff.

There is even what Anne calls a quiet room, which looks like a nondenominational chapel (hospice is for people of any faith, including no faith at all). “Families can come in here,” she says, “when they need to be alone, or to pray, or to cry.”

But I do not see tears today.

There is only one patient in the unit, and I see him only fleetingly, when his door happens to be open and we walk by. A gray-haired woman is with him—his wife, maybe—and she smiles at us, and waves.

And as we continue on, and I walk past the empty rooms which, someday soon, will be occupied by the kind of people who led me, as Anne is leading me now, to hospice, I remember so much more than tears.

There, flashing quickly before me in an empty room, is Angelo, the father of my best friend from fifth grade. A bank teller, jazz drummer, and man of wit and folk wisdom, he had opinions on just about everything—and an open mind if challenged. I think of him before the cancer, at his kitchen table, he in his late sixties, I in my thirties. He is holding up a carton of milk, pontificating about the appalling way most people open the spouts by pushing their fingers inside the folds of the lid. Then I remember his daughter, still my good friend, on the day of the funeral. She is saying to me, “Those people in hospice were amazing.” That is the first time I hear about hospice, and immediately I want to know more.

There, in the next room, I see my best memory of Kenny. A friend who was the bookkeeper at my food cooperative, he told me, soon after we first met, that he could eat whatever he wanted, because he was HIV-positive, and someday he’d be getting too thin. I was in my mid-twenties, he in his mid-thirties, and the closer I got to him, the more I worried. When I learned, a few years later, that he’d come down with pneumonia, I worried harder. When I learned, a few months later, that he’d caught it again, I knew. He left the food cooperative and settled into bed at home. I said, “I’ll come to see you every week,” and for the better part of the next two years, as his partner John tended to him, I did. I hadn’t yet heard about hospice, but, as I later learned, I was practicing it. When I came, John was able to take a break, and Kenny was able to have company. I sat on his bed, listening to his stories about his life, his sadness over the life he wouldn’t have, his happiness about all the love he’d come to know. We never cried. We laughed, especially when he sang along to his favorite Bette Midler video. He had a big booming laugh, and that is what I envision now: his head back, his mouth open, our hearts open wide to the world.

I see others in my memory as we proceed down the halls. The ones killed by accidents, brain hemorrhages, undiagnosed heart conditions, who went too fast to know they were going. What their families would have given for the pause before it was over, for the opportunity to hug, or listen, or assure them someone was there. For what each of their losses taught me was the luxury of hospice.

And then I imagine the patient I have been visiting for the last several months. We also do not cry. With her Alzheimer’s, I’m not even sure she knows she’s going. Sometimes she’s distressed because she’s convinced her mother—dead for decades—is expecting her, but she can’t find the door out. Sometimes she thinks the floor is a cliff and she’s going to fall off. I touch her hands and speak to her. I ask her to tell me about her mother. I suggest we look up from the floor to watch a video of Lawrence Welk. And on warm days, I offer to wheel her outside. She loves the sun, and we sit on the patio, getting warm. I ask her if she wants to sing, and she always does. That is what I see now: us sitting on the patio, singing “America The Beautiful” or “When You Wish Upon A Star.” Singing is good for the memory, I’m told. But as I know from Kenny, it’s just as good for the soul.

“Why do you do it?” people ask.

I think about this question again, as Anne and I say goodbye to the nurses.

She leads me back down the labyrinth of hospital corridors, away from this place of loss and love, where I will spend so much time in the months to come, and where many lives will change, including, in ways I cannot predict but know I will cherish, my own. And as we reach the ground floor, and step out into the light of everyday life, I realize I have a better answer than any of the ones I’ve been giving.

I do it because everyone deserves to be heard.

I do it because everyone deserves to pontificate about milk, or sing along to Bette, or sit in the sun on the patio.

And I do it because everyone deserves to reach out for another hand. Even though nobody knows exactly what lies ahead, with hands intertwined we will walk there together, side by side, for as long and as far as we can.

We’re in a time when the bad news just won’t stop gushing. So what can we do to resist hopelessness, despair, and grouchiness about the state of the world?

Celebrate babies!

That was the idea dreamed up by two of my neighbors, Lyn Doto and Bill Montgomery, when they realized that our already fabulous neighborhood – Midtown Brandywine, in Wilmington, Delaware – was in the midst of a baby boom. I don’t know why I hadn’t realized it until their invitation slid through our mail slot, but it’s true; the last few months have brought us almost a dozen babies and pregnancies. So last weekend, Lyn and Bill threw a party to welcome all these giggling, squirming, thumb-sucking, wide-eyed, and sleeping new individuals to our community. The main guest of honor was a six-week-old, Ethan (along with daddy Bob and mommy Amie), but as we all poured into Lyn and Bill’s house, we delighted in everyone there.

And almost everyone in our neighborhood was there! How incredible is that, given that the party was at ten a.m. on a Sunday?

But I live in an extraordinary neighborhood. People hang out on porches, have long conversations on the street, help each other shovel snow in the winter, watch movies projected onto walls in the summer, and throw parties all year round. Most of the houses are over a hundred years old, most of the trees are leafy and tall, most of the sidewalks are brick. Many of the residents are involved in the arts; our neighbors paint, work in theatre, do photography, make animation, write lively blogs, produce television shows, work on films – you name it. We also have community leaders, with some involved in their churches, others in city government. Others are marathon runners, long-distance bicyclists, lawyers, engineers, postal workers – and, of course, front porch pontificators.

It’s such a great neighborhood, it was recently the subject of a feature article in Delaware’s premiere newspaper, The News Journal. It’s also why, when I got married and was unenthusiastic about the house my husband had bought in this neighborhood, we decided to fix it up and stay. In fact, the friendliness of our neighborhood led me to write my most recent book, The House On Teacher’s Lane, which is about how we repaired and rejuvenated our house – and our relationship – so we could stay right here.

As I wrote in that book when speaking about my neighbors: “We know all their names. We have spoken with them in shorts and bad hair, in down coats and good spirits, with groceries in our hands and worries on their minds, in front of the mural a resident artist painted on his wall and beside the toy truck the little boy plays with across the street. Newcomers or old-timers, black or white, gay or straight, corporate or Bohemian, they are talkative and open….We live…right in the middle of the very characteristic that everyone seeks but that’s never a parameter on real estate Websites: an actual community.”

I know, in our world of bad news – and people living isolated lives, wondering how to connect face-to-face with even one person whose company they enjoy – this is hard to believe.

But it’s true.

So please join us at our party. And I hope that, by the end of this photo montage of the event, you’ll come to believe in community again – and feel buoyed by the power of babies.