Resilience and Disability

I. An Introduction to Living with a Disability

two people speaking using american sign languageLife has no shortage of personal challenges and disasters, some small, such as a minor car accident, or some major, such as a serious illness or disability. Resilience is the ability to manage adversity in your life, to bounce back.  It is not a trait that is inherited. But research shows that it is a set of skills and attitudes that create mental toughness. These skills and attitudes can be learned and applied in dealing with these challenges. Just as we know that reinforcing a bridge may make it stronger and less likely to be washed away by a flood, we know that reinforcing an individual’s coping skills, the resilience, can make it less likely that they will be overwhelmed, washed away, in the same flood.

To succeed and manage the challenges that you face with a disability, you will need resilience. Those who cope well with a disability, who bounce back, end up knowing more about resilience than the average person.  In fact, we have used persons with a disability to teach the skills and attitudes of resilience to more “able-bodied” individuals. The Maine Resilience Program was developed by persons with a disability to assist first responders and other community members on being able to develop and maintain these skills and attitudes.

The program that follows is an introduction to a program that was originally published in 2003, Living with a Disability: An Owner’s Manual. The program was created to help individuals who were dealing with one of life’s major challenges, living with a disability. Our goal then and now is to provide the information, skills, and resources you need to succeed. This program does not offer all the answers, but it does offer an effective process by which many difficult situations can be approached and dealt with. We have attempted to create a short and easy-to-read guide, owner’s manual, to living your life with a disability.  Like a driver’s manual, it doesn’t matter what kind of a car or van you drive.  There are simply some general rules and principles that apply.

To effectively manage your disability, you will need to learn new skills and refine the ones that you presently possess. This requires practice.  Living with a Disability provides basic information  about  a  variety  of   issues  and  problems  that  you  will  face  as a  person with  a disability. You need to become the expert on your disability. Much of the material in Living with a Disability will require re-reading, discussion with friends, family, and healthcare providers--and more practice.

If, after completing this introduction, which focuses to a large extent on the skills and attitudes of resilience, you are interested in learning more, you may purchase a copy of Living with a Disability by following this link and downloading it, or you may order a hard-bound copy.

What constitutes a disability?

Having been born without a left hand, I remember that it took me a number of years to feel it was okay to be just as mad over that as was the individual who had lost the use of his legs through a car accident. Relatively speaking, my loss was less than his, but my anger at the time was no less intense.  What constitutes a disability is a relative matter.

Being born or acquiring a disability can, to say the least, have a major impact on your life. It can shape or reshape the way in which you look at yourself and the way in which you relate to others.  Managing a disability is a time-consuming process. It often places you in a dependent role with others. It is frustrating. It can limit your life in many ways. It can close doors, but it can also open new ones. One of the new ones is the ability to see things from a very different perspective.

Disability: My Own Experience

Having been born with what many might consider a minor disability, the absence of a left hand, I have sometimes struggled with the question of where do I fit? I am clearly not able-bodied. The military agreed and didn’t send me to Vietnam. Of course, I really do not understand what it would be like to have two hands, since I never have.  The world is set up for people who have two hands. Everything from tying your shoes to opening most containers assumes that you have good use of both hands. But what am I complaining about? I can walk up stairs, I can drive a car, etc.  And so the debate has always gone. Inside of me, at least. What I do know is that I share a lot in common with other people who are disabled. I certainly feel the same about most issues.  For example, I know that I am different and a minority in most settings.  I was the only kid in my home town with one hand. Like most disabled people, I have been questioned all my life as to why I am different.  Although I have gotten more comfortable with this over the years, I have never quite gotten used to it. As a child, I used to avoid these questions and looks by hiding my difference, e.g., putting my deformed hand into my left pocket, etc.

I was aware that adults may be more uncomfortable than children were. Younger children just seem to be curious. But there was something in the way older children and adults questioned me that bothered me, and at times I felt ashamed.

As an adult and as a psychologist, I am aware that the way we deal with young children about difference has a lot to do with the attitudes and behaviors that they eventually develop around people who are different. It starts with our attempts to hush young children and keep them from asking questions so that they will be polite and not rude. The message that we convey when we do this with our children is that there is something wrong about the difference that shouldn’t be talked about. There is something wrong with the person who has the difference and if we talk about it, we will embarrass the person. Children are also often taught to feel sorry for the disabled person and to thank God that they are not like them. It doesn’t take long to understand why children develop the attitudes and behaviors that they do around disabled people.

This early training as a child contributes to many adults feeling uncomfortable around people with physical differences and encourages adults to avoid interactions or close relationships with these individuals. I have often felt over the years that many people did not really want to get to know me very well because of the physical difference and that many adults kept me in a category separate from the one they placed themselves in.

Unfortunately, avoidance behavior only increases this discomfort with people who are different and encourages segregation and discrimination. Lack of interaction contributes to a lack of understanding and awareness which contributes to accessible bathrooms not really being accessible, to ramps being too steep and therefore dangerous and inaccessible, etc. On the other end of the continuum, this uneasiness can lead to systematic efforts to extinguish difference.  As a disabled person, I am aware that the Nazis came for those with physical differences and disabilities before they came for the Jews and the Gypsies. I am still waiting for someone to erect a monument to the million-plus physically different folks who perished in the Holocaust. Dealing with other people’s attitudes and stuff about physical difference, my physical difference has always seemed to me to be the most unfair thing about being disabled. Learning how to tie your shoes with one hand is hard enough. But I think I have finally realized over the years that to deal very well with my own stuff – my anger, shame, etc. – with my physical difference requires that I deal with other people’s curiosity and uneasiness about it. Easier said than done.

 

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