Friday, May 29, 2009

What defines you?

My mom was a beautiful woman. As a young woman, she looked like Elizabeth Taylor in National Velvet. As she got to be in her thirties, she looked more like Mary Tyler Moore. She had a beautiful mane of brown hair and, as was the style at that time, she wore it big. Teased and standing what seemed like a foot over the top of her head. She was very easy to spot in a crowd. She was also the one person you did not want to have to sit behind in a theater. We are talking really big hair.

At some point during the 1960’s, she decided to become a platinum blonde, a fully teased, large mane, platinum blonde. In time, everybody knew her for her hair and she wore it that way for almost 40 years……except for once.

One year for her birthday, we decided to give her a makeover. A friend of ours was a hair stylist who also thought Mom was beautiful and was excited about doing the makeover. So we did it.

Mom looked beautiful. We did not change her hair color, but changed the size and shape and gave her a cut that was much more ‘current’. We changed her make-up and got rid of her orange and white lipstick (I don’t know when this look became popular) and shortened the length of her eyelashes. The makeover was a huge success. Mom looked tremendous and we had brought her up to date in our modern world. We had done something good and we were proud of ourselves.

There was only one problem. When Mom saw the makeover, when she finally looked in the mirror and saw herself, all she could do was cry! “My hair? What did you do to my hair? I look like a boy!”

I don’t think that she left her house for at least two weeks after that incident and I know that she must have spent hours every day looking in the mirror and trying to correct what we had done. Eventually she got a wig that, amazingly enough, resembled her own hair and she wore it until her hair had grown out enough for her to tease and resemble the “crown” she had worn for so many years.
Her hair, her mane, her look defined her. Without it, she was no longer herself. Without it, she cried and could not leave her home for fear that someone might see her. It was how she saw herself and defined herself. It was her identity and for a period of time, we had taken that away from her.

After she got her wig and once her hair grew back, none of us ever mentioned the “make-over” again. However, I don’t think that any of us ever forgot the incident, especially her.

On the surface, this identity crisis may seem shallow and vain. But in actuality, it was much more than that. It was how she saw herself in the world. Suddenly and abruptly, that was gone and she felt that she no longer fit in the world she had known for so many years.

The question is this: what defines you? What if you no longer had your hair? Or could not sing or dance? Or see? Or walk? Would your life be over? How would you deal with a sudden or abrupt change in your capabilities, or worse yet, how you looked? Is it how you define yourself and could you redefine yourself if you needed to?

For many of us who live with a disability, we have had to do just that: redefine ourselves. For me, having a progressive disease has allowed me some time to adjust to the changes my body is making. Others, those who have experienced an accident or some other traumatic incident, had to change their view, how they see themselves in the world, abruptly and quickly. The ability to do that is the difference between moving on with our lives or not.

There are a million reasons why we may have to change what defines us and not all are caused by disease or trauma. A change in jobs, relationships, finances, even weight can be reason enough. The question we need to ask ourselves is this: “What defines me and if I had to change, could I?”

Most people will never have to answer these questions and that is a good thing. Yet, self examination is always a good thing too. After all, if change does happen, we don’t want to “wig out.”

Participate. Make a difference. Live a life that matters.

Thursday, May 21, 2009

Changing the world one song at a time.

While walking down the street in New Orleans’ French Quarter, a friend and I walked by an elderly gentleman sitting on the corner smiling and greeting all the passersby. We acknowledged each other with hello and kept walking. Then I thought ‘he looks familiar’ and asked the friend I was with "Have you seen the video on YouTube of people singing Stand By Me? I could swear that man was in the video."

We turned around, walked right back and sure enough, I was right and that is how I met Grandpa Elliott. But that is just the beginning of the story.

Grandpa Elliott is a fixture, a personality in the neighborhood. Not everyone knows his name, but most seem to know who he is and on what corner he can be found. Spend a few minutes with him and you will quickly understand why.

I am guessing that he is in his sixties, maybe older. He has a full, bushy, white beard, a "jolly" physique, and wears glasses (Really just frames. There are no lenses.) that don't hide the twinkle in his eyes, or the fact that he is blind. He wears a funny, misshapen hat and a grin that you know is genuine and constant. Grandpa Elliott is happy man.

In a matter of seconds you are very engaged in conversation with this very charming and caring man. He wants to know about you and is ready to tell stories of his own life too. Whether talking about himself or you, the conversation quickly turns to song and he wants you to sing too. Don’t know the lyrics? He will start another song right away and before you know it, you are sitting on a street corner singing and laughing with your new friend.

I hope that everyone will take a moment to watch the YouTube video featuring Grandpa Elliott. The message is clear: We are one people, living together on one planet. When we remember that, we make it a better world.

I am certain that the memories of my meeting Grandpa Elliott will last a long time. More importantly, the lessons to be learned can last a lifetime. What is that lesson? That we can all make this world a better place one smile, one hello or one song at a time.

It turns out that I am not the first person to discover and appreciate Grandpa Elliot. If you go to and search for Grandpa Elliot, you will find dozens of entries including one with me. OY!

Make today a great day for you and for someone else. Smile and say hello. Singing is optional.

Participate. Make a difference. Live a life that matters.

Monday, May 11, 2009

I am a survivor. We are all survivors......AGAIN

I originally wrote and publshed this piece more than six months ago. Since then, much has changed in our world and economy. In re-reading this, it seemed much more relevant today than it did then. I hope you agree.

What prompted me to write this was not my disability. It was prompted by the current financial crisis that our nation, and our world is experiencing.

Sometimes we have to make adjustments that we never dreamed of making. Certainly, with my disability, that is what I have had to do. I am not alone. There are more than 50,000,000 people in this country who live with some kind of disability, many less severe and many more severe than my own. Every one of us has survived.

Many of my closest friends are struggling to make ends meet. Their world’s are changing and they are wondering what the future holds for them. Some of them have lost their homes and businesses. Some have moved to new cities. Many are wondering how will they pay their rent? Buy food? What will they do for a living? Very real, very difficult questions, all of which can be answered.

The simple and seemingly trite answer is that when the world changes, we need to change too. Because of my disability, I already know this to be true.

When I gave up driving more than three years ago, I wondered if I would sense a loss of independence. When I had to give up working more than a year ago, I worried about how we would make ends meet. As my disease progresses, I wonder what the future will be like.

What I have learned and know is that with whatever challenge comes my way, it will be dealt with. I will make the necessary changes and adjustments in order to get by. I will survive this ‘change’, because survival is what we do. It is a most basic human instinct.

The difficulty for those caught up in our financial crisis may be that they have not yet learned what I have from living with a disability. That is, to trust that they will make whatever changes are required in order to survive. Is it difficult? Yes. Is it painful? Yes. But it can be done and will be done.

Many of us remember the stories that our parents and grandparents told us about their growing up. My mother did not have a bedroom and slept on the floor of the dining room until she was teenager. My father-in-law is a Holocaust survivor and I won’t begin to tell you about what he endured against extraordinary odds. Many of us know stories about the Great Depression, with its breadlines and soup kitchens. God willing, we will never have to endure what others have. And yet, for a great number of people in this country, things may get worse before they get better.

Why am I saying all of this? I am saying it because we are survivors. It is a basic instinct that we all have. We will each do whatever we need to in order to survive. Will we need to get new jobs? Will we need to move? Will we become or take in roommates? Will we ask for help? We can and will if we need to.

It may not be pretty, or nice, or comfortable or easy to do. But all of us will do what we need to in order to survive. It is my hope that knowing that and trusting that is true helps us get through some of our most challenging times.

No one planned for this economic crisis. No one plans to live with a disability. But we do, because we are survivors.

Participate. Make a difference. Live a life that matters.

Sunday, May 3, 2009

Watch Your Language!

"Words are the envelopes that hold a person's experience of another person, place or thing." I learned this almost 30 years ago and knowing it has helped me learn to listen and speak differently. This is a matter of much more than semantics. The words we choose to use can and do make all the difference in the world.

As a person who lives with a disability, there are a few words that are commonly used incorrectly. If we use the right words, we have the potential to change the world's experience of people with disabilities. This applies to the observer and the person with the disability.

Disabled. This is the worst word of all. We disable an engine, which means turn it off. We disable a bomb, which means disconnect it. Last time I checked, I have neither been turned off nor disconnected. I am a fully functioning human being who lives with a disability. Not disabled. Many of us with a disability are often treated as though we have been disabled, turned off or disconnected, and this is wrong. Everyone has something that they cannot do, which means that everyone has some kind or level of disability. Mine, like tens of millions of others in this country, is just more visible than most others. Am I disabled? I am if you disconnect me or turn me off.

Handicap. The World Health Organization defines (in not so few words) a handicap as a person's judgment about a disability. This applies to the person with the disability and the observer. Is a disability a handicap? Only if we let it be. My father gave me a great compliment one day when he said "Michael, you are not handicapped. You may have a disability, but you are the least handicapped person that I know." I hope that can always be said about me.

There are other definitions of handicap. It can be an "added advantage " too. Shorter lines at airports and amusement parks, better parking spaces, discounts for travel, restaurants and more. It is also an advantage given to another in horseracing and golf -activities that many with disabilities don't do.

Person with a disability. This is always the right term to use. It is the term which allows the person with the disability to remain whole in everyone’s eyes. It is the term that contains the most respect and dignity for the individual. It also accurately reflects the condition of the individual.

Accessible. This is another correct term which is now used more and more instead of handicap. We now ask for accessible bathrooms, accessible parking, accessible hotel rooms. It suggests that the facility has been made accessible for someone with a disability, particularly those using a wheelchair. It is a correct term. After all, would you really want to stay in a hotel room that was handicapped?

Because I live with a disability, these words are important to me. I am certain that there was a time when I also used those other terms without much consideration. Now, as a member of the 51,000,000 member community of people in this country who live with a disability, I have changed my language and my perspective.

When we listen to the words someone uses, we can learn much more than the story they are telling. We can learn about their experience and perspective. Are they positive or negative? Accepting or judgmental? Responsible or victims?

When we change our own words, we can change how we see the world. More importantly, we can change how the world sees us.

Participate. Make a difference. Live a life that matters.