On Independence

© 1993

For the past several years, I have traveled around the country speaking to people with disabilities, parents, and professionals. The goal of these presentations is to show the strategies I use for independence. Most of the principles are applicable to other people with disabilities so they may achieve more in their own lives. This essay is an attempt to share these ideas with more people.

Why are my ideas so interesting to these people? It is true, I am not an example of a “perfect” person with a disability. I do not claim to be one. I wrote this essay because I wish I had access to ideas like these while I was growing up.

I went to a public high school where I was the only person in a wheelchair. Since I had no positive role models, I thought I was extraordinary. I thought I was the only person with cerebral palsy in public high school, going to college, while dreaming of a career, house, and family. The fact is, I am not extraordinary. I may have been alone, but you do not have to be. You are not alone!

There are many of us with the same hopes, fears, and desires as the rest of the world. If we share our ideas, we do not have to be extraordinary to achieve our goals. Share ideas with others and listen to insights “from one who has been there.” We all have something to learn.

This essay is my contribution to the learning process.

My Background
To understand where my ideas are coming from, let me explain further about myself. As I am writing this, I am a twenty three year old senior at University of California, Berkeley. I was born with athetoid cerebral palsy that affects all four limbs and my speech. As a result, I use a power wheelchair to get around. However, I can shower, dress, and eat independently. Growing up in Connecticut, I was part of a family who always encouraged me to do as much as possible. Since I have two younger brothers, I can’t get away with much. In my family, I can never use my disability as an excuse for anything.

On Self-Empowerment
The key to effectively dealing with your disability is self-empowerment. If you have the desire to control your own life and strategies on how to minimize limitations, your disability will cease to be a major hurdle.

Be Self-Empowered
Even if you need lots of help, you can still be in control. Make all your decisions. Do not let other people unilaterally impose their desires on you. However, you should still consider the opinions of others. No one is entirely independent.

Example: Just because you need help eating does not mean someone else should decide what you should eat. Make those decisions yourself if you want to.

Choose an Appropriate Wardrobe
You must decide the level of attention you want to place on your appearance. If it is important to you to dress well, hire somebody. However, catalog stores like Lands End offer all-elastic pants. There is a style for you, either casual and convenient or dressy and formal. Like the difference between loafers and wingtips.

Example: I rarely wear clothing with buttons. This means that I can’t wear a shirt and tie as much as I might like, but I also don’t have to rely on other people to get dressed. It is a personal choice, but I prefer independence to style.

Try New Things
When you have people around who are willing to help, do things that you are unsure you are capable of doing. You will never know unless you try. You cannot plan effectively if you do not learn your abilities.

Example: If you need to reach something on a shelf and you are not sure if you can reach it, have someone nearby when you try. It is better to try and fail than to never try at all.

Know Your Limits
Part of being independent is knowing when you need help. If you think you will injure yourself or damage property by doing something, don’t do it by yourself. Make arrangements for someone to help in case something goes wrong.

Example: If you are unable to safely carry breakable dishes, do not do it. It is better to admit your limitations than to break something.

Be a Creative Problem Solver
There will always be obstacles. If there were not, your disability would not be a hindrance in life. The key to self-empowerment is finding innovative ways to get things done. The more experience you have with obstacles, the easier it will be to overcome new ones. Do not let difficult situations get to you, find creative ways to take care of them.

Example: If you normally use a straw and there are none available, use a Bic pen. Also, always carry duct tape.

On Interacting with Other People
You will meet many people who have no knowledge of, or experience dealing with people with disabilities. Because of this, they will be afraid and won’t know how to act. It is your responsibility to make them feel comfortable. These tips are meant to make this situation more comfortable for everybody.

Be an Aggressive Socializer
Try to initiate conversations. Most people tend to shy away from people with disabilities, but if you are social and make people understand that you have the same interests, and desires as they do, they will feel much more comfortable and willing to interact.

Example: If you are in a silent waiting room and feel like someone is staring at you, make an intelligent comment about the magazine he is reading. He will begin to realize that you are another intelligent person.

Join Disability Groups
It is important to be around other people with disabilities. It can be very comforting to know other people have “been through it” and you are not the only one.

Example: Most areas have a Center for Independent Living that offer advocacy services. Many also act as a community center, referring people to different social groups and other resources in the local area.

Be an Educator
A major cause of our limitations is other people’s perceptions of our abilities. This is due to their own ignorance. The more people know, the less they will be afraid and the more we will be able to accomplish. Do not discourage people from asking questions about your disability. If they even hint at a question, answer it honestly and openly. Be clear, concise, and knowledgeable about common difficult situations.

Example: People often equate slurred speech with mental deficiencies; I let them know that cerebral palsy is a motor disability which does not always affect intelligence.

Have a Positive Attitude
People feel uncomfortable enough dealing with somebody with a disability for the first time. You should not worsen it by being too sensitive, too insensitive, too demanding, or too talkative.

Example: We all know the type of person we want nothing to do with. Regardless of whether this person is disabled or not, he is obnoxious, boring, and arrogant. When you do have a disability, these personality traits can be exaggerated and have more of a negative impact on your relationships.

Have a Sense of Humor
There will be many frustrating and saddening moments. A humorous statement can lighten the heaviest of moments. Being able to laugh at yourself shows others that you are comfortable with your own disability. Also, a quick wit is a clear sign of intelligence.

Example: I always make comments about my sloppy eating style. I warn my friends to wear their ponchos while I eat spaghetti.

Live for the Future
There may be things in your past that are distressing or saddening. This is especially true if you became disabled later in life. However, dwelling on the past will get you nowhere. It may be harder to do things now, but you still need to do them. Also, nobody likes to hear the same stories over and over.

Example: Acquiring a disability is a life transforming event. However, it is not a life ending event. You must adapt to a new lifestyle because the world does not stand still.

Dress Nicer than is Necessary
People are less likely to have doubts about someone who is dressed better than expected. This is true whether or not you have a disability. However, the issue becomes more critical when a disability is apparent. A nice looking outfit can combat many misconceptions. When in doubt, wear a blazer. They are easy to take off and put on, can be worn with a turtleneck or polo shirt, and don’t look too formal.

Example: I often travel on airlines alone. Airline personnel are the worst at dealing with people with disabilities. However, I find that when I wear a blazer, they listen to me a little more.

On Technology
Technology includes everything from rubber-bands to velcro, wheel barrels to wheelchairs, ramps to elevators, and microwave ovens to computer devices. There are so many solutions available that the problem is finding which product will work the best for you.

Use Computers to their Fullest
This includes everything from doing your school work to playing games. Even if you are not doing your school work, you can still learn all sorts of things with computers that will make you more employable later. Once you get started, it is much easier to gain additional skills.

Example: You can use the principles you learned writing a letter in a word processor to balance your checkbook in a spreadsheet program.

Find the Easiest Products
There are many different models of everything from lamps to toothbrushes. Experiment to see what works best for you. A minor change can make life tremendously easier.

Example: If you have trouble with the switch on a lamp, buy the Clapper or a power strip. The Clapper is a commercial product that allows you to turns appliances on by clapping your hands. A power strip allows you to turn many things on with one large switch.

Get Involved in Telecommunications
Not only can you use your computer to do research, but you can use your computer to access many local, free bulletin board systems (BBS’s). BBS’s allow you to interact with people without them ever knowing that you have a disability. This can be a great advantage when meeting people.

Example: You can get an account on one of the major commercial telecommunications services (America Online, CompuServe, Delphi, Genie, eWorld, and Prodigy) for as little as $8 a month. These services offer many discussion areas and updated news. Communication by electronic mail is also much easier than traditional mail. There are no envelopes to address or papers to fold.

Choose Low-Tech Over High-Tech
If there is a low-tech way for you to efficiently complete a task, do it that way rather than relying on an expensive piece of equipment. You never know when the device will break, and it might not be available when you need it. However, this does not mean never choose high-tech solutions. Choose wisely between fancy and complex, or simple and reliable. Just make the choice wisely.

Example: Instead of carrying around an expensive computer just to take notes in class, use a tape recorder or copy the notes from another student. Sometimes it is not worth the extra expense to be totally independent.

Find an Appropriate Telephone
Your telephone is a critical device for independence. There are many different options like large button or speaker phones. Determine what will work best. Most local telephone companies have special programs to provide these devices at discounted rates.

Example: Some phones include programmable buttons so you do not have to enter frequently dialed numbers like friends and family.

Know Your Wheelchair
If your wheelchair breaks and there is no specialized mechanic available to fix it, you are usually out of luck. However, a general knowledge of the way it operates can help you explain to a mechanically inclined person how to correct a minor problem.

Example: If you are out alone and the belt comes off the track on your power wheelchair, you should be able to instruct a passerby how to put it back on.

On Attendants
Attendants, or personal care assistants (PCAs), are people that help you perform tasks such as bathing, dressing, cooking, cleaning, or eating. The hiring and management of attendants is a critical part of independence.

Be Assertive
Know what you need, and how to communicate it to other people. If you do not know what you need, nobody else will. Most people that hire attendants have a set routine of what needs to be done. However, new attendants will not be able to automatically figure out your particular routine. You must be able to effectively communicate to the new attendant what needs to be done.

Example: If you plan to move, document your daily routine well enough that your new attendants will be able to learn it quickly.

Acknowledge the Help People are Giving You
It is one thing to ask for help, it is another thing to expect it or demand it. When you do receive help, be sure to show your appreciation in the most appropriate way. This can be anything from a simple “thank you” to a payment for services.

Example: If you are at party and desperately need help using the bathroom, ask a close friend. However, when it is over, mention how much you appreciated the help. If it required excessive time or energy, offer to pay him.

Always Be Professional
If you need a lot of help, do not impose on your friends, hire people to do what you need done. Likewise, do not hire friends to be your attendants. You need to be in control. When you hire friends, the nature of the relationship will get blurred.

Example: If you need help eating and your friend helps you eat at a party, realize that it is special occasion. Do not assume the she will do it every time you hang out together.

Treat Your Attendants Well
Attendants are people too. If you treat them well and give them respect, they will be much more willing to work for you. Nobody likes to work for a dictator.

Example: If an attendant asks you if he can come later than usual tomorrow, and this change will not make you late for a commitment, agree to it. A little flexibility and understanding can go a long way.

Keep Lines of Communication Open
The relationship that you develop with your attendants is inherently intimate. Problems always arise when people are so close. An adequate amount of communication can solve the problems.

Example: If your attendant is putting something in the wrong place and it bothers you, you need to say something about it. If you don’t, your anger will grow unless the issue is resolved.