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.


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 me 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.

“I keep on going”: Getting through subway entrances and life

Once Claude and I are settled in her home office, I offer her the bottle of spring water I brought. It is Yom Kippur. When we had arranged to talk on this day, she mentioned that ordinarily in her tradition she would neither eat nor drink on this fast day, but that she has to drink water for medical reasons. She makes this concession but still keeps the fast in her own way by not eating. I soon learn this is typical of Claude: She does not resist doing what she must to deal with her illness, but neither does she let it interfere with her life one inch more than necessary.

She takes the water with thanks, pours us each a plastic cupful, and begins her story.

Claude was diagnosed with secondary progressive multiple sclerosis 15 years ago, when she was 35, just three years after she moved to this country from France. “As weird as it can sound, I was relieved because it showed that I was not completely nuts, that I was not just imagining. My mother used to call me Miss Catastrophe. My specialty was losing balance, just because the crack in the floor would be for me and I would zoom!

Claude briefly explains multiple sclerosis for me by comparing nerves in the human body to electric wires: “You take an electric wire. You have a plastic coat around it to avoid short-circuit and prevent people to burn themselves. My body has decided that this coating is a foreign body and must be attacked.” She says that besides being physically debilitating, it is extremely painful. She does not dwell on this subject.

Many people with multiple sclerosis are not visibly different from anyone else. Looking at a stranger, you cannot tell whether they have multiple sclerosis or not. There is no known cure.

Claude herself uses a walker and a wheelchair at home and an electric scooter outside. She is very fond of her scooter. “My scooter is my legs. I go out without any worry or shame.”

Not far from Claude’s home is a subway station. Since she cannot drive, and her scooter cannot go far due to limited battery life, the subway is a primary method of transportation for her. The elevator in this underground station has been broken for over two years, she tells me. Claude does not allow that to deter her! She tells me of driving her scooter down the tunnel entrance intended for buses, the one marked “No pedestrians.” “The bus drivers, they know me,” she says. “I’m bold.” She pulls out her French/English, English/French dictionary and quickly looks something up. “Yeah, that’s what I am. I’m bold. I’m proud. I do things on my own. I am not someone who is going to be stopped by a disease.”

She also takes public buses. When a wheelchair or scooter user is a passenger in a bus or van, it is vital to their safety that their wheelchair or scooter be strapped down properly. The local bus drivers do not always do this, Claude tells me. “What should I do, clutch the bar, ‘Oh, oh, oh! I’m going to die!’? No.” She calls the MBTA authorities. “You report exactly what happened. What he didn’t do, and how endangered you were.”

She refuses to feel sorry for herself, or to let anyone else feel sorry for her. “My life is a little bit different from most people. I have more physical struggles. But let’s be honest: I’m blessed. I have health insurance. My husband has a job; I touch wood. Do you feel sorry? Come on! I’m blessed! You cannot say, ‘Poor Claude.’”

She is not always able to put on such a brave face. “I fall down. I cry. I cry and you won’t stop me, because life is not fair.” However, she adds, “I don’t want to talk about those moments. Carpe diem. You live on a daily basis and you try to have as much fun as you can, because you don’t know what the next day is made of. The next hour. I have always lived like that.”

Carpe diem—Latin for “Seize the day.” So what has Claude chosen to do with her days? “I said to myself, ‘Claude, you’re tired; you’re sick; it’s going from bad to worse—actually, from worse to worse. Why not do something you’ve wanted your whole life?’ I ended up doing my dream, which was writing.” She is currently working on a fictionalized history of her grandmothers’ lives. “I write for my son. I want to leave him something. I would like him to know about his heritage. I want him to have a sense of what it was and where it was. Also, I want him to know that his mom could be funny. I want him to find me in these writings.” She gestures to the tower of papers on her desk.

“Some people just give up and expect others to take care of them. ‘Oh, poor little me! Look what life is doing to me!’ This is beyond my understanding. The other solution is to keep on going. So I keep on going.”


“You’re such an angel,” the woman said to me.

What had I done to earn such a compliment?

And why did her compliment make me so angry? Outraged.

I had arrived at work that morning and let myself into the residence where my five clients lived. I waved hello to my coworkers, busy with paperwork and other chores, and the clients, sitting in the living room. The notes from our program director said that two of the clients were planning to go to Dunkin’ Donuts for breakfast that morning. It was one of my favorite things to do with the clients: go out for meals and just hang out together.

My coworker and I got the two clients into the wheelchair van and down to the local Dunkin’ Donuts. Other customers kindly held the doors for us as we maneuvered the wheelchairs into the restaurant. We got the food and money all figured out and arranged the chairs (two restaurant chairs for my coworker and me; two empty spots at the table for the clients’ wheelchairs) so we could all enjoy our breakfasts.

I bit into an egg-and-cheese sandwich. My coworker spread cream cheese on a bagel. One client ate a donut. The other tried to lift a cup of lukewarm coffee to her lips and spilled it all down her shirtfront.

It happened sometimes; her hands weren’t always steady enough to hold drinks level. I was ready. I jumped up with napkins in hand.

I was helping her get cleaned up when the woman at the next table over spoke. “You’re such an angel,” she said to me.

At the time, I was simply confused. An angel? For not making my client sit in a puddle of coffee? For having breakfast with her? Or was this woman saying that my choice of profession somehow made me an angel?

I think I muttered, “Um, thank you,” avoided eye contact, and wondered why her well-meaning compliment made me feel angry.

That was over a year ago, and I have had a lot of time to ponder the possible meaning of that brief statement. Is there something angelic about helping someone drink a cup of coffee when that person is unable to manage the cup on her own? Is there something angelic about deigning to hang out with a disabled individual? Does doing my job (for which I do get paid, after all) make me an angel?

It’s the second possibility that makes me angry. It’s as if that woman implied that disabled folks are so difficult, even unpleasant, to be around, that anyone who sits with them and munches on an egg sandwich must be of a higher order.

And she implied this right in front of them, as if they couldn’t hear, or understand, or feel insulted.

And apparently thought she was paying me a compliment, performing a good deed, by doing so.

I was outraged on my client’s behalf.

Months after this event, I developed a health problem and had to take medical leave from work. In accordance with the federal Family and Medical Leave Act, I arranged to leave work for three months, after which I hoped to return with a doctor’s note saying I was fit to resume work.

It was a hard three months. I was used to taking clients to doctor’s offices; I was not used to being in a doctor’s care myself. Gradually I got used to the idea that I now had a disability. I endured tests, medications, and a hospitalization. A family member had to take FMLA from her job to help care for me, for which I was grateful and ashamed. Every day was a struggle, medically and emotionally.

After three months, I returned to work, note in hand. It said that I was fit to resume, but cautioned that due to a medical reason I should not do the overnight shifts I had been doing previously.

A coworker welcomed me back and asked if I would be doing all my old shifts again.

“No; my doctor says I shouldn’t do overnights any more.”

She threw her head back and laughed. “Doctor?! You’re not sick!”

Again, I was confused and not quite sure why I felt angry. I immediately invented an excuse to leave the room.

This time I was offended personally.

So. We have people in our society who are obviously, visibly disabled, and some people seem to think they can’t hear or understand what is said around them. And we have people like me who, while following doctor’s orders and trying to act “normal” in public, are outright laughed at when they share that they have medical limitations.

Where do you fall? Are you visibly disabled? Or perhaps you look “normal,” but some things are hard or even impossible for you: walking up steep stairs, seeing things in your peripheral vision, eating nuts. Or perhaps you are one of the lucky few who is able to do everything you choose to do, and struggle to understand the rest of us.

If we stumble along together, without drawing lines and ostracizing people, does that make us all angels? If so, there are an awful lot of angelic people.

Or maybe treating a differently-abled fellow human with decency should be simply required, part of being a member of the human race, and the word “angel” should be reserved for those who have in fact done something special. Which I have not, that woman’s well-meaning compliment to the contrary.