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

Last Wednesday, two weeks before my sister Beth’s fiftieth birthday, my phone rang. I saw her name on the caller ID and was baffled. It was only nine thirty in the morning, and she rarely takes her lunch break so early. I snatched up the phone, expecting her usual, sing-songy “Hi, Sis. Thiz Chatty Beth.”

Instead she said, “My side hurts.” Her voice had a gasping, panicky tone, as if she was holding back tears.

I sat up at my desk, on full alert. This is the opening to a call you do not want to get from someone you love, and especially not someone who needs a little more help to get through life. My sister Beth has an intellectual disability, and although she’s confident and self-reliant, has a boyfriend and an apartment of her own, and has carved out a very social life riding buses all day, every day, I know I need to help when she needs me.

I’ve always known that. She’s eleven months younger than I am. On her birthday we’ll be twins for the next month.

I kept my voice calm. “Does it hurt a lot?” I said.
,
“A lot. And I’ve been throwing up all morning.”

“That doesn’t sound good.”

“My aide’s coming to take me to the doctor.” She pushed the words out through what were obviously volleys of pain. “At ten.”

“Do you want me to come to you?” Beth lives a couple of hours away, even if I broke speed limits all the way there.

“You don’t have to. She’s taking me.”

“Maybe you should go to the hospital.”

“I’m going to the doctor!”

“Will you call me as soon as she sees you?”

“Yeah.”

“Do you want to stay on the phone until your aide gets there?”

“She’s gonna call so we can’t.”

“Then tell her to call me, okay?”

“Yeah,” she said, and she hung up.

I sat there, my heart pounding. I have no medical training, but these sounded like serious symptoms. I wanted to do right by her, but she didn’t tell me to come. My friends with kids have told me about calls like these, when their daughter or son phones in the midst of a crisis, not knowing what was happening, wanting to connect but not wanting their parents’ help, and maybe living too far away for help to come galloping immediately there anyway. My friends have told me about the fear, the feelings of powerlessness, the time-stopping descent into hell of not knowing how bad this might be.

Having a sibling with a disability is not like having a child. For one thing, Beth has always been there; unlike parents, I knew no Before.

For another, everywhere you look, a substantial number of the adults you’ll see are parents, so, as singular as your problems with your child might be, you can take comfort in knowing that you’re far from alone. But special siblings, far less common, might know few, if any, others like themselves, so the sense of aloneness, of having to figure it out on your own, of having no one except a handful of other siblings who truly understand, can be profound.

There are many other distinctions between having a child and being a sibling to someone like Beth, but the one I have the opportunity to notice most often is that sometimes Beth wants to me to do the things a parent might do, like pay for her meals when we go out, attend meetings with her aides, answer questions she’s too embarrassed to ask anyone else. But other times she wants me to be only a sofa-sharing companion while watching DVDs, a supermarket chauffeur who lets her buttons get pushed, an engaged listener to endless bus-related gossip, a tireless back scratcher who expects to get teased for eating soy yogurt, agrees to watch Shark’s Tale for the thirtieth time, notices that each toenail is painted a different color, and knows not to step on the purple rug—i.e., she wants me to be a sister.

Being the sibling of a person with special needs means being a shape-shifter. Which is why, when she didn’t ask me to come meet her at the doctor’s, I didn’t just don my parent cape, jump in my car, and fly up to see her. I stayed dressed as an ordinary sister and waited by the phone at home.

Years ago, I struggled with just about every aspect of our relationship. Then I rode the buses with her, and came to terms with many things about her, about myself, about the unique nature of the special sibling relationship. I recounted my experiences in a book, Riding The Bus With My Sister, which became a movie. But my story with Beth has, of course, continued after the last page and the final credits. That’s the real difference between being a sibling of someone like Beth and being a parent. The lifelong worry of After.

When I was a kid, After meant after our parents passed away. I knew, as did my brother and other sister, that we were expected to step in and be there for Beth after they were gone. As a child, I just accepted this as a fact of my life, but by my college years I’d come to dread it. How would I know what to do? What if we weren’t getting along, as was the case then? Why wasn’t I free to live my own life without this responsibility?

Then Beth entered the world of adult services, and we were lucky enough to find an agency that treated her well. They got her an apartment when she didn’t like the group home. They gave her good training in independent life skills. They hired aides who often stayed with Beth for years. With their support, I no longer had the worries I’d had about After. I could choose to be there After, but it wasn’t a requirement.

I chose to be there.

And then I started to realize there was another kind of After.

What happens After one of us begins to lose the vigor and health we’ve both enjoyed through our half century together? I hate to say this, but I’ve always hoped she would lose it first, so I could—if she wanted—accompany her to doctor appointments and keep her company if she grew weak. Yet she’s always seemed so robust, so unstoppable; even with a cold, even in a blizzard, nothing will keep her off the buses. What will it be like to watch the decline of the willful, energetic, Croc-addicted, Winnie-the-Pooh-adoring, always-in-my-life force of nature known as Chatty Beth? (She was Cool Beth for a long time, but switched to Chatty Beth when a new, favorite bus driver was amused by her talkative ways.)

I haven’t wanted to think about it. Not only can’t I imagine her not being there, always eager for a visit, a call, a letter, and money to buy her ice-cream. But I’ve known siblings who’ve lost their Beths, and have told me that the absence and grief is made all the harder by people who just don’t get it. One friend told me that, soon after her sister’s funeral, people said to her, “You must be so relieved.” She wasn’t relieved at all; without her sister, she felt forlorn, and given that kind of reaction, she felt abandoned.

It’s ironic. Being a sibling of a person with a disability means always feeling connected to someone else. Yet because of the way our society thinks of that someone else, it also means feeling far apart from others.

Fortunately, because of my book, there are hundreds of thousands of people who do think about Beth. Many of them are also siblings, or parents, of people with disabilities. Or they have disabilities themselves. And they know her life is worth as much as any other life, and would never dream of saying, “You must be so relieved.”

Yet there I sat, after she’d hung up, feeling all alone. I wasn’t at her side as she hurried to the doctor. I wasn’t speeding down the highway to meet her at the hospital.

Only later did I learn that I wasn’t alone at all. When the day had begun, and she’d insisted on getting on the bus despite the pain in her side, her bus drivers took stock of the situation. When she began to throw up, they urged her to go home, call her aide, see the doctor. When her aide came, they rushed to the doctor. When the doctor saw her, she sent them to the emergency room. When Beth called her boyfriend from the hospital, he rode his bike right there.

I learned most of this a few hours later, when another one of Beth’s aides began calling me with updates. Over and over she called, as every little piece of news developed. That’s when I found out that Beth had many people who’d been ready to help out. That’s when I found out that, after an early suspicion of diverticulitis and the discovery of an excess of white blood cells, and then a CAT scan, an IV, and morphine for her pain, her aide and her boyfriend stayed by her side. She wasn’t alone.

And, because of the kindness of her friends on the buses, and the professionalism of the people who work at her agency, and the devotion of her boyfriend, neither was I. I might have been sitting alone at home, holding my breath. But I was one of many who encircled her, waiting for the answer, hoping for the best.

Finally, at seven o’clock, she called. This time there was excitement in her voice. They were releasing her, she said, and she couldn’t wait to get home. Her aide got on the line and explained that Beth had had a kidney stone, which she’d passed while she was in the hospital. She was also found to have a slight case of pneumonia. Oh no, I thought, imagining her blasting onto the buses the next morning. But then I learned that, when Beth called a bus driver to tell her, she was told she simply had to stay home the next day and fill the prescription the hospital gave her and take it easy and that was that. And so, Beth told me, she would.

I went to see Beth a few days later. She seemed a little lower in energy than she often does, though I’m not sure if that was because of the pneumonia. In fact, one of her drivers said to me, while I was there, that maybe it was a misdiagnosis, because, after her one day off, Beth had gotten back on the buses and ridden with her usual gusto. The downshift I saw in her energy was probably more related to her having fallen over an uneven sidewalk when she went out to get the prescription filled. She’d hit her forehead and gashed her knee, which still hurt. I felt a surge of worry, then learned that she’d applied Neosporin and bandages.

“How did you know to do that?” I asked.

“A driver told me.”

So as of today, it seems we’ve pulled through. There will be other times ahead, I know that. And maybe the next one will hit me instead of her. But right now, when I think about the Afters that will come, I know she won’t be alone—so I won’t be, either. Some people just get it. They might not be siblings, or even parents. But whoever they are, they know what matters. They know not to step on the purple rug. They know not to ignore the many-colored toenails. They know not to toss around words like “relieved.”

Every wedding is a lacework of stories.

The threads are long and delicate, having survived the hopes and disappointments of previous romances, the fierce friendships of youth, the familial realizations of adolescence, the giddy playmates of childhood, the dependent clasping of infancy. But they don’t stop at birth; every wedding extends far back in time, to relatives known and unknown, whose choices—visiting a particular matchmaker, moving to a new part of the world, taking up a certain line of work—set the course of the bride and groom’s lives. Every wedding, too, encompasses the dreams and disillusionments of the guests who come to the day hoping the happiness they’ve found, or for which they’re still searching, has come to the couple before them.

All these stories come together on a wedding day, and even though no one in the room knows all of them, we see the interweaving occur in front of our eyes, making something beautiful that has never existed before—and, if all goes according to plan, that will never fray or fade.

This is what I thought last week, when I was the matron of honor at my older sister’s wedding.

I didn’t think it on the plane ride from Delaware to Phoenix. My husband Hal and I were caught up in the logistics of seating assignments and arrival times, the pleasures of a layover in my favorite airport, the discomforts of turbulence (for me) and a migraine (for him). Nor did I think it in the two days we had before the wedding, when, having recovered from the flight, we took walks through the sunny valley, trying to remember the names of the plant life we were passing, wondering what words the locals use to describe the brown mountains.

I only began to think about it at the dinner for a dozen friends and family, held the evening before the wedding, when the conversation turned to what advice, if any, each couple at the table would give the almost-newlyweds.

“Forgiveness is important,” one couple said, giving each other knowing glances.

“Remembering that the goal of any argument is win-win, not lose-win,” added someone else.

“Having the ability to laugh at yourself,” said another.

I looked around the table, and understood that we were hearing conclusions reached after long, complicated stories, just like what happened with Hal and me. Then one person recalled how hard the early years of their marriage had been, after their two spools of stories netted together, and they discovered many glitches and snags.

Hal and I discovered the same thing when we laced our lives together. But in our history, that was before we took our vows, in the thirteen years (yes, you read that right) when we lived together. In fact, our imperfect union led us to break up, and only after six years had passed—six years when we each went through many changes—did we come back together and get married. Talk about a lacework of stories when we stood before the justice of the peace!

Our path to marriage was unique, though what couple’s isn’t? Certainly not the people sitting around me at the table. Certainly not my sister and her fiancé.

But none of this really hit me until the ceremony itself.

It was to be a modest gathering, held on the covered terrace of an Italian restaurant, with forty guests. Perhaps because the bride was fifty-two and the groom sixty-one, or perhaps because they prize their network of friends more than ostentation, the flowers, photography, and cake were to be handled by people they’ve laughed, cried, and yardsaled with for years. Hal was given the task of pressing the buttons on the iPod. An acquaintance from my sister’s spiritual group would be administering the vows.

A few hours before the big moment, we met for a rehearsal. Then the bridal party of four drove back to the hotel and got ready.

The bride’s dress, which was sleek, sleeveless, and violet, had been purchased at Ross Dress for Less. The dress for the matron of honor (me), a loose emerald silk two-piece, was sewn by our stepmother. The other two women in the bridal party—the groom’s grown daughter and six-year-old granddaughter—wore blue and purple, respectively, their dresses from Victoria’s Secret and JC Penney.

My sister produced a box with a bouquet for her and me. She placed a wreath of lavender flowers on the granddaughter’s head.

Then we drove back to the restaurant, and parked, as planned, in the back. After two days of wind and cool temperatures, the evening was breezeless and warm. We lined up, hidden behind a corner, the sun not yet set, the guests taking their places on the terrace.

Hal pressed the first song on the iPod. The groom’s favorite musical group is the Carpenters, so the first song was one of theirs, “I Just Fall In Love Again.” As the bridal party stood waiting for our cue, the second song, I imagined the groom and his best man doing the same, on the opposite side of the terrace. In the spirit of colorful frivolity, they both wore purple shirts. The groom also wore a tie chain with the icon of his engineering honor society. An engineer by education, he’s now a defense systems analyst. He was trim and fit in his suit, and his dark hair was neat as always.

Then Hal began the second song. This was by the bride’s favorite group, the Beatles, a preference I happen to share, and as “In My Life” drifted softly over the terrace, I poked my head out of hiding.

There was the woman performing the ceremony, taking her place in the designated alcove on the terrace.

Then came the groom, smiling right at me, walking with his best man.

Then came me, walking toward them, bouquet in hand, cameras flashing beyond the corner of my eye.

And then my almost-brother-in-law’s face lit up. I turned around, and there was my sister, looking more beautiful than I’d ever seen her.

Accompanied by the groom’s daughter and granddaughter, she came to the alcove. The three of us stepped aside. The best man stepped aside. The song came to its end.

And then, after a brief preliminary by the woman running the nuptials, my sister and her almost-husband produced sheets of paper on which they’d written their own vows.

I’d of course known many of my sister’s life threads, but that’s when I remember some of his. His first marriage, which hadn’t gone well, resulted in the daughter beside me. His second marriage, filled with love and respect, ended tragically, when his forty-four-year-old wife died suddenly of a stroke. He then grieved. He tried to date but nothing clicked. He moved to Phoenix to be closer to his newly married daughter and her future children. He settled in, buying a nice house, working at a job that suited his talents.

Then one day after eight years had passed, dearly wanting to talk to his wife once more, he contacted a psychic he’d seen portrayed on television, Allison DuBois. They set up a phone call, then talked for a long time. Most importantly, she impressed upon him that his wife wanted him to have the courage to move on with his life and to be happy again. His wife wanted him to find somebody new. The call left him ready to embrace the next chapter of his life.

Only a month later, my sister paid a regular visit to her financial advisor, a woman, assisted by her daughter, who she’d seen for years. My sister had begun working with the advisor after her divorce from her first husband. She’d told the advisor stories of the men she’d seen since: nice men lacking in ambition, including, for the most part, careers.

After the session ended and my sister left the office, the financial advisor started to think about another client, a defense systems analyst, who was scheduled to come in the following week. She went into see her daughter. “I think these two clients would enjoy each other’s company,” the advisor said. “What do you think?” The daughter immediately said, “I think so, too.”

So the financial advisor played matchmaker.

And my sister met the good man she’d been wanting so long.

And the defense systems analyst met the partner he’d been craving.

And romance enveloped their lives.

The vows complete, my sister and her groom turned to the guests. I turned too, and saw forty smiling faces, forty clapping pairs of hands, forty sets of stories. I watched everyone, and thought of all the histories I knew, and the many I didn’t, and how each of us hoped for this couple to have the best of all we’d ever had, and none of the worst.

Then I saw Hal rising from the iPod with tears in his eyes. Our gazes locked, and the moment froze with it. All of us together, in our messy jumble of losses and dreams, pasts and presents, lessons mastered and lessons just begun. Witnessing love’s needle stitching order into our lives. The glitches might come, the snags might appear. But maybe not. Maybe everything will stay just as it was right then: a beautiful mesh, a perfect design, a delicate lace that’s impervious and strong because at last these lives are woven together.