Life on Wheels (45 page)

Letting go might be a matter of identifying how your needs get met, and that could mean deciding that someone other than a family member should perform certain tasks.

When an experience is difficult, you might feel pressure to give up. You get tired, or the scale of the task seems overwhelming. Maybe life was already tough prior to your disability, and now you have the perfect excuse to surrender.

There are several possible outlets to spare you all the trouble—or so it seems: reliance on others, over-reliance on government support, or substance abuse. Each is a trap, a downward spiral that only produces more grief and pain, less personal freedom, less selfesteem. Each is more likely to alter your experience from simply having a disability to being truly unable.

A person with a disability who becomes fixated on the trauma, tragedy, fear, and depression will commonly resort to dependency. Having failed to transcend psychological dynamics such as these—putting yourself into the hands of family or institutions that you expect to take care of you—can seem an appealing and easier path to take.

Perhaps your parents are in that role. But they will get old before you do. Many people who relied on parents are finding it hard to adjust as their parents age and are no longer able to help with chair transfers or other physical tasks.

People who perform necessary tasks that allow you to function are not “taking care of you.” They are assisting you. You decide what they do and how and when. It only becomes dependency when you surrender decision making and allow others to have control.

Some people don’t have any choice about taking government assistance. They are unable to work or unable to find work (possibly because of discrimination) or the disincentives are so strong that they can’t work, lest they lose their medical coverage, for instance.

However, if you are thinking that you can’t work and don’t bother to find out what is possible, you might well be underestimating your abilities. Plenty of people with significant disabilities have good jobs or businesses of their own. Corporations are increasingly learning that hiring people with disabilities and making accommodations is profitable for all parties. The front door is now more accessible, and you’ll find a wide stall in the rest room. Computer technology makes it possible to work by voice command or with limited hand and arm capacity. Computers also make home-based businesses more viable.

Relying on the government often means a poor quality of life. People with disabilities can tell many nightmare stories of struggles with the bureaucracy, having to fight for benefits, and getting trapped by arcane regulations or incompetent workers. Living on Social Security disability benefits earns you the right to medical coverage under Medicare, but Medicare has strict limits on what it will cover. The power wheelchair that might be ideal for you could be refused. You could need in-home assistance, but a Medicare rule that says that you must be unable to leave the home could mean that volunteering at a local school two days a week might cost you your coverage. It’s a mistake to assume your only option for financial support is government assistance or that relying on this aid is the best means for adapting to your disability. For many, this decision carries a high price, including the missed potential to be more financially self-sufficient and contribute your unique abilities to your community.

Suppressing painful emotions with substances can be tempting, using them to “self-medicate.” Maybe you received a legal judgment and accepted a lump sum that put a lot of money in your pocket. Maybe you don’t need to work. Sitting at home drinking or smoking pot could be a hard option to resist.

Substance abuse, be it alcohol, drugs, or food, will compromise your health and hugely amplify the limiting effects of your disability. You will lose strength and need more assistance pushing a chair or making transfers. You will likely gain weight, increasing the risk of pressure sores, and, again, be more likely to need help in transfers. Changes in your health and strength might force you across that boundary of needing personal assistance or even having to move into a “care” facility.

Many other health risks accompany substance abuse, including heart attacks, liver problems, and even cancer, especially if you smoke. You are compromising your immune system when you abuse substances. Drugs and alcohol also compromise your ability to absorb and metabolize nutrients from your food. This lowers your body’s defenses and affects your ability to maintain healthy skin and good circulation, recover from an illness, and heal an injury.

Scientists now understand that good feelings relate to chemicals known as endorphins. In effect, your body makes its own drugs—a natural high. When you habitually abuse substances, your body ceases to produce endorphins on its own. After a time, the only way to feel good is to generate endorphins artificially with drugs or alcohol.

Alcohol and drugs affect your judgment and ability to make decisions. At worst, your family might come to believe you are no longer able to make responsible decisions for yourself and may consider taking control of your life. They might even get legal guardian status and have you placed in a nursing facility.

Most of all, drugs and alcohol make things worse. Whatever “benefits” one derives, the benefits of drugs and alcohol are short term at best. Becoming dependent entails a list of liabilities:

1. Drugs mask the problems in need of real help.

2. Drugs delay or even prevent your developing more effective and sophisticated strategies of self-management, making repetitive hurts more likely.

3. Drugs can create physical addictions at most, emotional dependence at least.

4. Drugs affirm your sense of being out of control and barely managing, hardly a boost to selfesteem.

5. Drugs can stimulate or aggravate the same neural pathways as depression.

Independence does not mean that you have to push yourself too hard and become the stereotypical “supercrip.” Independence means using the capacity you have, whether it’s your physical ability or your ability to manage resources such as benefits and personal assistance services. Independence is about being willing to take some risks, more than might be comfortable at first.

If your fears of facing life with a disability lead you to escape through various forms of dependency, think again. The results of dependencies are far worse than if you jump in, test your capacity to adapt, and seek support for the process. Yes, this can be very tough to do initially. There are many people out there willing to help, be it the local center for independent living, free community counseling, support groups, or friends and family. Fight hard for optimal health and independence rather than accepting a downward spiral into increased suffering and dependency.

Thanks, at least in part, to the Boy Scouts—do your “good deed for the day”—and the March of Dimes, people have a desire to help those “in need.” People are essentially generous in their intentions. Unfortunately, such well-meaning gestures can be more of a hindrance than a help.

There is an art to giving and receiving help. One of the most interesting and never-ending features of life on wheels is to find the balance: to learn to ask for and graciously accept help when it is truly needed, and to teach those close to you how to help appropriately—which often means not helping.

The emotions around being helped are amplified for wheelchair users. It is a fact of life that there are now a variety of situations beyond your capacity to handle alone or that are awkward or difficult. An object may be too heavy or awkward to pick up from the floor or put on a shelf. You may need to get down a flight of stairs. No one wants to be dependent on others, but, at times, accepting help is a fact of life for people with disabilities in order to do what you want to do or go where you want to go.

I remember my own notion of disability before my injury. I imagined that these people must be used to being helped. Now that I know better, I continue to get the sense that nondisabled people think the same thing. Why would we resist help? Isn’t it part of the disability experience and accepted as such?

Exactly because you must accept some degree of help, the things you can still do yourself become that much more precious. It is sometimes worth a little extra effort or strain to avoid having to surrender control. Says this man with quadriplegia:

But going it alone is not worth the extra effort when it wastes precious energy or risks injury. You will need to find your own appropriate balance between doing it yourself and accepting or seeking help in order to ensure your safety or preserve your energy.

The quality of how you relate to people who are helping—or offering—is a poignant exercise in achieving an equal balanced relationship in which all parties feel safe and respected. It’s also a built-in opportunity to raise awareness about the disability experience.

But, ultimately, trying to change the world gets old. It takes a lot of energy to get wrapped up in caring whether or not people understand how you function and what independence means to you. As this young woman with paraplegia learned:

Frankly, we can’t always be nice, though this man who had a stroke struggles with the balance:

The line between doing it yourself and asking for help can be a hard one to straddle. As Irving Zola wrote about his own experience:

Personal limits can easily be crossed, as people do not understand that your wheelchair is essentially part of your body, that you can even sense when it is touched by the movement you sense through your body. This paralyzed man defines the boundary and has a creative approach to making his point:

The experience of being helped is inevitably charged on both sides. Carol Gill observes:

Particularly in the early days of a disability, the boundary is not clear about when to ask for or accept help. For example, it can be easy to fall into the trap of trying to prove to the world that you are not limited by your disability. “I can do it!” can become a habitual response to any offer of help simply because the identity of having a disability may feel uncomfortable.

It is extremely common to fall into the habit of trying to “prove that you’re not disabled.”