Dealing with Disability

by Abby Albrecht

Your boss comes by your cube and says he’s taking the whole group out to lunch. Great, you think. You prefer to eat alone, but free food is impossible to turn down. Before you have a chance to find out where you’re going, your boss has moved down the hall to bestow free lunch on a co-worker.

Lunchtime comes, and you all head down the street. Is it dim sum? Maybe Mexican? Before you get your hopes set on anything specific, your boss guides you toward the one restaurant in the neighborhood with steps at the entrance. Heather, a co-worker and close friend, looks at the steps, looks at your wheelchair, looks at the steps again, and laughs loudly. You’d shared stories about how little your boss seemed to notice, so his dining choice shouldn’t have surprised you.

So, what do you do when you’re out and about and the people you’re with forget that your disability means that you’re in fact disabled? And what do you do when you’re going about your life and a person on the street or in a store treats you as if you’re mentally challenged instead of merely in a body that doesn’t work quite right?

Regardless of disability, almost everyone at some point or another has wished that people would look beyond appearance to his or her inner person.

But there are times when you need to be realistic and take your disability into account. The key is to find ways to gracefully deal with life while maintaining a sense of humor.

My parents had one rule they made sure I followed from the day I got my first wheelchair (OK, they had many rules. They are parents, after all.): Never go through the back door of a restaurant or store. If the establishment couldn’t bother to put even a removable ramp at the front door, they didn’t need my money.

One restaurant in the South of Market area of San Francisco where our office group went for a business meal has two steps to the front door. As usual, my boss truly didn’t notice the steps the previous times he’d eaten there. They get away with it legally by having a ramp that goes through the back trash area.

I could’ve chosen to refuse to eat at that restaurant. But I’ve rarely been good at boycotting. Plus, I needed to stay on my boss’s good side.

I could’ve gone through the back door. But I didn’t need to kiss up to my boss that much.

Instead, I did something that wasn’t entirely proper, but that woke up my boss and the restaurant manager. I asked the manager if he had a folding ramp. When he said he didn’t, I smiled and told him I’d walk him through the process of popping my chair up the steps.

The manager hemmed and hawed and pointed to the back door. My boss came back out to see what was taking so long. I explained that I don’t go through back doors, and he thought that was reasonable. He agreed that I should go through the front door, especially considering that the steps were small. After I walked the manager through getting a wheelchair up the steps, our group sat down to eat.

To this day, the guys working at the restaurant remember me. The other times I ate there (always on the office expense account), the back door wasn’t even mentioned. The owner still won’t put a ramp at the front entrance. But, that’s OK.

We introduced my boss to an accessible dim sum restaurant close to the office whose staff remembers our favorite dishes — and often tells the kitchen to start preparing our regular orders while we’re still settling at our table.

You decide to commute home with a friendly co-worker, Rachel, so you can catch up on the gossip you’ve missed while on deadline. When you hit the train platform and see the crowds, you realize you probably should’ve stayed downtown for drinks. But it’s too late, and you really want to catch “The Daily Show” at 7 p.m. anyway. You and Rachel head to the line for the train car you prefer.

Trains packed like sardine cans speed by. Rachel talks about her puppy’s exploits as you make your way up in the line.

Then it happens. A scruffy man with a cane comes up and begins reading Rachel the riot act. Doesn’t she know that, as a person with a disability, I can cut to the front of the line? The man continues to babble about the rights of those with disabilities.

Rachel isn’t one for confrontation. Sure, she can talk down Teamsters. But random people screaming are another story.

What do you do?

I’ll be honest: I normally got in trouble when I was growing up for sassing teachers. The practice has come in handy, however.

I laid on my sweetest smile and turned to face the man. I spoke slowly and enunciated carefully. I explained that if he was referring to me, he should speak to me, not my friend. I thanked him for the information, and agreed it was useful to know if I was in dire need. Then I pointed out that the people in line ahead of me had been waiting longer than we had.

The man was taken aback for a moment. He was so full of righteous indignation at the way he believed people with disabilities were treated that he never thought to ask me how I felt. It never occurred to him that many people with disabilities not only can speak for themselves, but can fight their own battles.

Many of the people in line had to stifle grins at that point. They knew me as a regular, and as someone who always had a smile and “hi” for the other regulars. I was far from a shrinking violet who needed to be cared for.

At the same time, I tried to be gentle with the man. I knew he meant well; he just went about it the wrong way. The sassy part of my personality really wanted to tell him off. After all, I was 26 and single in the city. But I could tell he would take an idea to its extreme, and that might color his next interaction with a person with a disability. So, after my initial snipe, I tried to speak calmly and rationally.

It seemed to work. He was still mumbling about disability rights as he walked away, but he was no longer trying to incite line rebellion. The other people in line also now knew that I respected the unwritten rules of waiting in line.

The train is your second favorite part of the day. (Listening to the first can of soda opening ranks as first.) You have a chance to read, or listen to music, or talk to friends, or best of all … sleep.

Two stops before your destination you wake up enough to get your wheelchair ready to go. Then you notice a problem. Your book fell while you napped; and when you make an attempt at grabbing it, you lose your balance.

There’s no way to reach the book, and you aren’t even sure you can get back up in time to get off at your stop. You don’t need or want someone to hover over you every minute of every day. But you need help.

How do you get help from a group of strangers focused on getting home?

I’m a klutz. It has nothing to do with my disability and everything to do with coming from a long line of klutzes.

Back in school I played the cute card. I know, it doesn’t work for everybody. And I wasn’t big on pity. But, a few quick eyelash flutters and a hair swish aimed at the right football player could get anything picked up.

I learned a lot from those football players. The most important thing was that they weren’t mind readers: If I didn’t ask, they couldn’t know that I wanted help. It’s probably a really good thing that they couldn’t read my mind, come to think about it.

When I drop my book on the train, I know it’s OK to ask the people nearby for help. They can always say no. And sometimes they do, though more often they’ll just become “deaf.” If people pretend they can’t hear me, I leave them alone. Even I wear a headset on the train some days to tune out other passengers.

The world is full of people asking for help. While we may wish we could help everyone, there are days when we’d rather hole up in a cave and be left alone. Since there are few caves in San Francisco, the other option is to fake the inability to hear someone asking for help.

I’ve found the best way to avoid making any one person feel uncomfortable receiving a plea for help is to look slightly between and above two or more people. Then, anyone within earshot is included in that plea for help.

At the same time, I try not to order people to help me. (The previously mentioned sassy part of my personality often bites its tongue at this point.) When asked by people helping me if I needed anything else, I’ve been known to ask for an attractive man to fan me.

So far, no one has been able to get that for me. But by keeping the relationship light between me and whoever is helping me, I’m most often treated as an equal who simply needs a hand.

	Abby Albrecht

I could say it’s about interpersonal relationships — to get the help you need, communicate with people as an equal, instead of as someone who always needs help. Or, I could say it’s about how you view yourself — those clichés are true: You are what you think.

Or maybe it’s just that people are clueless and you may need to hit them over the head with a clue bat when they forget the restaurant they invited you to has stairs.

But life has more than one answer to each problem. My answers tend toward self-deprecating humor. Your answers will likely be different. The key is to stick to your guns and push for the answer that works the best for you. Balance interpersonal relationships, acknowledge your rights to your needs, and remind people when necessary that you’re just like one of them — just a normal person with wheels and the ability to run over their toes.

Abby Albrecht, 28, has spinal muscular atrophy type 2. She’s a Web designer and writer in San Francisco.

Stepping Up to a Challenge by Kristal Hardin I felt brave the day I went to meet Thomas Young in early 2003. I knew nothing could stop this cub reporter from getting her interview. I had a good story to tell and I was going to do whatever it took to tell it. As a correspondent for the De Queen Bee and De Queen Daily Citizen in southwestern Arkansas, I’m a late bloomer in the journalism field at 47 years of age. While my limb-girdle muscular dystrophy diagnosis isn’t new, asking if interviewees have steps into their homes is something I often forget to do. I’m still ambulatory but unable to climb stairs. Thomas Young with Tigger the bobcat   I had spoken with Young on the telephone several times and I was looking forward to meeting this Dr. Doolittle. Young is a rehabilitator of injured wildlife. He has raised 12 bears, releasing 10 back to the wild. He has rehabilitated more than 5,000 hawks, 2,000 owls, 18 bald eagles, nine golden eagles, and countless rabbits, squirrels and deer. Young hoped that, with the exposure from an article in the paper, he could raise enough money to open his dream — a wildlife zoo on Rich Mountain near the Queen Wilhelmina Inn in Mena, Ark. I wanted to help him by producing a well-written article. I was optimistic and ready for the story. After a 45-minute drive, I arrived at Young’s home. I sat in the van gathering my wits, preparing my thoughts, and took my first look around. There were three concrete steps with no handrail to the front porch. I panicked, my heart sank, my legs said “no way,” and I planned for my escape. Too late. Here came this slender, 30-something young man with a ponytail and a huge smile. Young walked out that front door, down those steps and over to my van. I smiled back hesitantly and preceded to give him my routine disability speech. Thomas Young with Sheena, an 11-year-old mountain lion.   “I’m one of ‘Jerry’s kids.’ I have muscular dystrophy. And that means I can’t walk up your steps.” I asked rather sheepishly if we could conduct the interview in my van. Young looked me in the eyes and said, “I need you to come in the house.” I again explained that it wouldn’t be possible for me to maneuver up the steps. Once again, he said in a firm voice that I needed to come in the house. I started to get the creeps. I’d never met this man before, he lived off the beaten path, and now he insisted that I should come in his house! I thought it over: If he wanted me in the house that badly then he’d have to do what it takes and I told him so. He said, “Just tell me what to do.” So with cane in hand, I fearfully approached the steps. All I could think was, “This had better be worth it.” I explained that he’d have to face me and I’d wrap my arms around his neck. He agreed to this. Then I said he’d have to steady me by wrapping his arms around my waist and also help with the lifting. He agreed again. I was positive I weighed as much as he did. So if we both went down, it would be a nightmare getting back up. (Isn’t it amazing that people with MD have to think about how they’ll get up before they even fall?) Kristal Hardin   It proved to be a rather intimate slow dance up those steps with this persistent stranger. We managed without mishap. I walked into the house and he rather cryptically pointed to the couch and asked me to sit down. By this time I was thinking, “Good Lord, where is this going?” when around the corner bolted a bobcat. This year-old bobcat raced across the back of the couch and leaped into Young’s arms. “This is what I wanted you to see,” he said, smiling. “Meet Tigger.” Young is a very special man. Looking back, I wouldn’t have missed that interview if there had been a flight of stairs. The Associated Press picked up my article and Young opened his zoo that spring.