About valeriehadden

Valerie lives in the Boston area. She is a writer and has worked over the years with many differently-abled people. She wants to do her part to raise awareness of "invisible populations" and people with invisible disabilities. Contact her at valeriehaddenemail@gmail.com. Valerie thanks Martha Rounds, freelance editor, for her editorial suggestions on this blog. Martha.rounds@gmail.com

Van inaccessible

My town held a large public event this week. Hundreds of people came, and every parking spot in the area was taken. Unfortunately, someone chose to park their car (the red one) here:

van inacessible

It’s hard to see in this photo, but the space next to the red car, where the minivan was parked, was marked with a handicap symbol and the words “VAN ACCESSIBLE.” Except, of course, the space wasn’t accessible at the time of this photo. The red car was taking up the space needed to unfold a ramp or lift.

I hope the person who’d parked their red car illegally came back to the parking lot first. I hope no one had to wait for them to arrive before being able to use a ramp or lift to get into the minivan and go home.

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“How can we know the dancer from the dance?”*

The rhythm is counted out with a steady drumbeat; as the melody swells everyone steps as one towards the center of the circle, one–two–three–four, raising their arms and clapping on the four: one–two–three–clap! Then walking backwards to where they started: one–two–three–clap!, this time clapping behind their backs. And the dance continues, moving to the right, the circle of dancers whirling around the high-ceilinged movement arts center.

I sit on the couch at the edge of the dance space and eagerly gulp my water—I’m thirsty after our previous dance in the July heat. Under the couch, neatly tucked out of the way, is Delia’s white cane. I’m watching her and Mary Ellen as the circle moves around the room. Delia’s right hand rests gently on Mary Ellen’s left shoulder. As Mary Ellen dances forwards, one–two–three–clap!, Delia moves with her, lifting her own left hand in time with all the dancers in the circle. Then back–two–three–clap!, and Delia moves backwards in perfect step with the others, lowering her arm.

I’ve been admiring these two women this whole week at the dance retreat. I’m fascinated with the graceful way they dance, always next to each other in the circle, often side-by-side with their arms around each other’s waists. Before each dance, while the leader demonstrates the steps, Mary Ellen whispers to Delia: “Left foot forward…” When the dance has arm movements, Mary Ellen takes Delia’s hands and demonstrates for her.

Sometimes it takes Delia a little longer to learn a dance, and she and Mary Ellen have to step out of the circle as they struggle to get it right. When Delia has the steps down and they’re ready to join in, the two dancers nearest them unclasp hands, and the circle of joined hands expands effortlessly to include them as the dance whirls on.

Other times Delia picks up the dance quickly. When someone says “grapevine” she doesn’t need to see to know where to put her feet; her feet have danced that flowing step many times, in many different circles of dancers in many different dance halls.

Swaying in my seat to the beat of the music, I drink the last of my water. The dancers move in their circle around the room. One–two–three–clap!

*From “Among School Children” by William Butler Yeats

He knows about teeth, but…

When my grandmother Agnes, whom I called Nana, was in her 90s, she developed a dental problem that required surgery. She found a dental surgeon near her home who accepted her insurance and arranged for my mom to drive her to the appointment. On the day of the appointment Mom helped Nana down the hall and out the front door of her assisted living complex, got her and her walker into Mom’s car, and took her to the doctor’s office. There they found that at this doctor’s office, teeth would be the least of Nana’s problems.

Mom tells me about it: “We went up the elevator and then into the office, and there were two wide steps down. When we turned the corner, there were two more steps down.” For Nana this was a huge obstacle. She had had both hips and both knees replaced and walked with difficulty, even with the help of her walker. Mom remembers those four steps vividly: “She was not about to change her plans and see another doctor. She was moving forward! I just kind of held her around the waist while she went down. It was scary. She could have fallen. We both could have fallen! If she was in a wheelchair, we wouldn’t have been able to get to the doctor” at all.

“I asked the receptionist about another way to get to the doctor’s office,” Mom tells me. “I was greeted with a blank look—‘Huh?’—and then a strong answer, ‘Oh, there is no other way!’”

Once inside the examination room, Nana faced a different obstacle. After the doctor examined her, Mom remembers, he “looked at me and started telling me all about her mouth.” Nana was perfectly capable of conversing with and understanding the doctor; more importantly, she was a human being entitled to respect. White in her wavy hair and arthritis in her knees and hips had affected neither of those facts one bit. “I tried to redirect him,” Mom says. “I’m kicking myself now that I didn’t say forcefully, ‘Talk to Agnes. She’s your patient.’”

But Mom didn’t say that, and the doctor kept talking to her rather than Nana. Nana didn’t ‘fuss’ either. The surgery went forward, and Nana had her dental problem fixed. The other issues were never addressed.

Mom sighs with shame and defeat. “I guess he was a good dental surgeon, and he was in [her area].”

I want to believe society is changing. Nana is gone now and will never see it. But I want to believe that when Mom is in her 90s, she will be able to go to a doctor that sees her as a whole person, not just a broken body part.

A son and a father: Movement and laughter

Twenty-nine-year-old Josh is standing in front of the mirror at the YMCA gym, doggedly lifting his knees in turn, up and down, up and down. He is supported in this effort by the braces on his legs and his father Ross, standing behind Josh with his arms wrapped around Josh’s chest. Ross is the executive director and founder of AccesSportAmerica, a non-profit organization that uses sports to inspire higher function in people with disabilities. Other AccesSportAmerica athletes are also in the gym, working with other AccesSportAmerica trainers; today Ross is helping his son, his inspiration, while I stand by with my notebook.

Josh is telling me about something that happened recently: “I open the van, open the door with my hand. My hand open the door. I can’t get the van to go down and then up.” He does not make eye contact and seems intent on his exercise routine. His voice, like his gait, is somewhat jerky. The words are clear, but I am not sure what they mean.

Being Josh’s translator is obviously a role Ross is used to and comfortable in. As he helps Josh exercise, he explains easily: The lift in the wheelchair van Josh rides in has been having mechanical problems. Damien, who works with Josh, has been working on fixing it.

“He helps with the van?” I ask Josh, hoping the prompt will get him to tell me more.

“Yeah. The van went down and up. Black van.”

Josh finishes his mirror exercises and we start towards a leg press. Ross talks enthusiastically, apparently undistracted by constantly watching and supporting Josh’s movements. “Josh did some exciting things this year,” Ross tells me as we walk, his muscular arms still around Josh’s chest and his front pressed to Josh’s back. Josh walks with strength and determination, making his way across the room. When we reach the leg press, Ross helps Josh sit on the machine and move his brace-supported legs. I perch on a nearby piece of equipment, notebook and pen in hand, to watch and listen. I am impressed by Josh’s power and stamina; I am not sure I could work so hard for so long.

Among other adventures, Ross tells me, the family visited Josh’s sister, who lives in Hawaii. “We go surfing in Maui. Josh really enjoys that. Right, Josh?”

Josh’s comment on this story: “Trip. Trip. Trip. Trip.” He gestures as he speaks, with jerking, almost violent movements of his arm. It seems to me that he has something to say but cannot form the words, and that this is incredibly frustrating for him. I wonder what is happening in Josh’s mind, what stories and insights he has that I am not hearing. Ross doesn’t seem to have this difficulty; his relationship with Josh is so close that he seems to have a window into his son’s thoughts that is closed to me.

Returning to the topic of Josh’s wheelchair van and other vehicles, Ross asks me if I have a car.

“Yes, I do,” I tell both of them. “I drove it here today. It’s black too, like your van, Josh.” I hope that Josh might show interest in this detail, but he seems very involved in pumping his legs and does not comment. I drop the subject.

Instead we talk about another recent adventure. “I raced in the marathon,” Josh tells me.

This was an AccesSportAmerica marathon, a mile and a half long. Josh made it in an hour and a half with Ross assisting only by holding one hand, Ross tells me with pride.

Josh does not express pride nor any other emotion about the marathon as a whole; he is focused on a detail of the memory: “I hurt my leg,” says Josh. “I had a band-aid.”

After Josh leaves the YMCA in the van with his helper, Ross invites me across the street for a slice of pizza. He tells me that Josh has aphasia, a condition that makes language difficult. “There’s a lot more to Josh than he expresses,” he says. “Each day he says something or points out an issue which surprises me about how ‘in-tune’ and perceptive he truly is. For all his cognitive challenges, Josh is one of the wisest people I know. He can laugh when we are stressed.”

Before Ross returns to complete his work day with the other athletes at the gym, he chuckles and says, “Josh is going to talk about your black car tonight. That’s the kind of thing that matters to him.”

I stay sitting in the restaurant, going over my notes in preparation for writing this article. One moment stands out in my memory:

Ross’s capable hands helping him, Josh is using the leg press. Ross is telling me about Kim, Josh’s speech therapist. “She farts in front of Josh,” Ross confides. Josh laughs unconstrainedly at the universal humor of fart jokes, mouth open, eyes lit up with delight. Ross and I laugh too, and I see the love shining in Ross’s open face as he looks at his joyous son.

For more information on AccesSportAmerica, see http://www.accessportamerica.org/.

Restores your faith in humanity, doesn’t it?

It’s a Friday in summer, and time for the weekly free concert on the local town green. The green is full of people bustling around, throwing frisbees for their dogs and playing with their children. The seven of us are making our way through the crowd, heading for our favorite tree to sit under.

I have both my hands on the handles of R’s wheelchair. She sits quietly, smiling her shy smile and watching the busy green in front of us. My right arm is hooked through M’s left arm, helping him balance as he walks with me. He’s fingering the knotted end of his hoodie’s drawstring with intense interest, and is looking at it rather than the terrain as we walk; occasionally he stumbles and needs the support of my arm. My co-worker is pushing P’s wheelchair one-handed, no easy task. P is leaning back in her wheelchair, facing the sky with her sightless eyes wide open and an ecstatic smile on her face, whether from the cheerful crowd noise she hears or from something in her own head I can’t tell. My co-worker is using his other hand to help C push the joystick on his electric wheelchair to make it move forwards. (C has limited use of his hand and has trouble pushing the joystick on his own.) C is frowning slightly as his wheelchair bumps along over the green; this outing interrupted his favorite TV show.

With both my co-worker and I helping two people each, we have no hands to spare to help L as he uses his walker to walk along with us, somewhat unsteadily, over the bumpy grass, frowning in concentration. His gait isn’t smooth; sometimes he has trouble making his muscles do what he wants them to. His eyes are focused on the wheels on the front of his walker, and he’s not looking ahead to see possible obstacles.

The wheels on the front of L’s walker hit a small dip. He pitches forwards, and I watch helpless as he starts to fall.

Immediately, the three strangers nearest L rush in to grab his forearms and elbows and pull him up, helping him regain his balance and his grip on his walker. It happens so quickly he never has time to reach the ground and hurt himself. A fourth stranger steadies the walker and re-establishes its wheels on firm ground. When L is again safely upright with a firm grip on his walker, the strangers merge back into the crowd.

They saw someone needing help, gave it instantly and without question, and then went their own ways without waiting for thanks.

We live among good people.

The Voice of a Veteran

Originally published in Voices for Change, newsletter of the Transformation Center, Winter 2016

“There’s a little Marine [in] here,” says Tim, slapping his torso, “telling you, ‘You’re still there.’ The only ones who know are the people who have been there.”

Tim is an American veteran of the Vietnam War. Since the War, he has lived with what he now self-identifies as Post-Traumatic Stress Disorder. He says that when he returned from overseas in 1968, “I was a mean, mean guy. I did a lot of screaming and yelling, a lot of mood swings—and I didn’t know what a mood swing was! I was like a shadow person. As a shadow person, I can be somewhere else than where I am right now.

“It’s changed now. Now I can get it out. Now I got a voice.” Today, at the age of 65, Tim is a peer supporter, active volunteer, and self-described “pain in the neck.” He looks back over his life and speaks about what PTSD is like from the inside, and how treatment for it has changed over his lifetime.

When he returned from duty, no one offered him any support. “There was no place for me to really go” for help, he says. Indeed, he isn’t sure he could have accepted support if it was offered. “What would I say? Where would I start?” Also, he feared for his job. “I didn’t want anybody to know. ‘This guy’s got a mental illness; he might flip out or something.’ I never told them I was in the service, you know? They might not hire you.”

Tim worked in construction for over 40 years. He spent 10 years on the team of Boston’s Big Dig. He worked on the Congress Street Bridge. He proudly shows me his Laborers’ Union card, which he still carries in his wallet. “Kept me in reality; kept me in there; you know?” I ask him if he means that the work was an important wellness tool for him, and he says yes. “But they didn’t know that. You tell somebody, you might get laid off.”

He does remember one exception: “There was only one company that really helped me out. Walsh Northeast asked if I was a veteran. Only ones who ever asked me. I said, ‘Yeah.’ Left it like that. Didn’t want to tell them anything else. Didn’t want to do a whole lot of explaining.” Even with a sympathetic employer, Tim was cautious of revealing what he was going through.

So he lived with his rage and trauma, without any words for what was happening to him, without any organized treatment, until 2004. This, he tells me, was the turning point for him. “I didn’t have a clue. Until a helicopter, a bird, flew over. I dived right into a trash can.” Among the trash in the can, hiding from the helicopter that reminded him so vividly of the helicopters in Vietnam, he realized he needed help. “My primary at the VA in Jamaica Plain, I’m yelling at him” about that helicopter. “He said, ‘You have to do something. You’re going to fall apart. Go up to the twelfth floor and see the PTSD doctor.’ I really didn’t know anything about PTSD. They told me I should get treated. I said, ‘Get treated for what?’

“Then I started going to RLCs [Recovery Learning Communities], therapists, things like that. RLCs really helped me.” But, Tim emphasizes, it’s the other veterans who help the most. I ask him what he looks for in a mental health worker, such as a doctor, therapist, or peer supporter. He says what he wants most is someone who has also been in combat, not merely been told what it’s like secondhand. “‘Oh, I’ve heard that before.’ Yeah, but you haven’t experienced it!”

Today Tim volunteers extensively, on the Board of the Transformation Center, at the Hope Center (http://www.hoperlc.org), and at the VA. “The volunteer part, that keeps me in the Now. I work with World War II veterans, POW, and everything else. They didn’t say nothing, but they talk to me, you know?”

Once, a psychiatrist referred to him as a “patient.” “Oh, now I’m a patient? Well, I wanted to leave right then.” He imitates the doctor: “‘How’s your medicine?’ How’s your day going; that’s what I want to hear.” When Tim supports a peer, he says, “I like to respect you as a person. I’ll meet you in the park. We’ll sit on a bench; we’ll talk. I always bring up, ‘How you doing?’ you know? I try to keep good spirits with you. I have to have a therapy degree to have a conversation? Win your trust, that’s a big thing. People have to have patience.”

During the hard years, “Everyone said, ‘That Tim; he’s a nut!’” At his turning point, “That’s when I found out what ‘peers’ meant.” Now Tim can receive and give support—and he’s discovered that giving is as important to his wellness as receiving.

For information on the Veterans Affairs, go to http://www.mentalhealth.va.gov/ or call 1-800-273-8255 and press 1.

For links to RLCs in Massachusetts, go to http://www.mass.gov/eohhs/consumer/behavioral-health/mental-health/recovery-learning-communities.html.

For more information on the Transformation Center, go to http://transformation-center.org/.