"We must become the change we want to see in the world."
--Mahatma Ghandi
My last HuffPost blog elicited a wide variety of comments about whether someone would want to live after a catastrophic injury. There was a thread in the comments from able-bodied individuals that suggested that people with a serious disability would have no "quality" in their lives and that life may not be worth living.
Whether they intended to or not, it appeared that some people without a disability were not just speaking for themselves, but also for the disabled community. This is a common and disturbing attitude that society holds about people with serious disabilities. There is a false belief system that the dreams, aspirations and desires of an "able-bodied" person change the minute they become sick or disabled. Our society devalues a person with a disability and assumes that they could not possibly want the same things as an able-bodied person. Nothing could be further from the truth.
I also heard from people who told me about caring for someone with a disability and both the trials and the richness of that experience. You might be surprised to learn that they are people you work with or your neighbors down the street.
Our readers referred to end-of-life decisions such as removing a patient from life-support systems or withholding life-saving measures, but most disabilities present a very different set of problems. We often fail to recognize and address the issues that impact the quality of life for the millions of disabled people in this country. Many lessons can be learned for all of us by examining the factors that affect the quality of our lives. We speak of injecting more quality into our lives, but what are the components of this amorphous term? Bryan Jennett, a famous neurosurgeon, addressed this issue for brain injury survivors back in 1975. The principles he articulated hold true not only for disabled individuals but for all of us. The seemingly mundane activities that we take for granted are the key factors in determining the "quality" in our lives. Rather than assume it is not a life worth living, it is much more productive to look at how we can meet the needs of people with disabilities.
Personal Care
Able-bodied individuals take for granted the ability to go to the bathroom, bathe or brush their teeth without assistance. I have had patients who refuse to go home because they could not endure the embarrassment of a spouse cleaning them after going to the bathroom. The ability to master and have control over our bodily functions is central to a sense of mastery over our lives and correlates directly with our sense of self esteem. Few animals survive if they depend on others for food and basic maintenance. For man, it is an issue of quality rather than survival. We take our morning "routine" for granted while the disabled individual may spend months mastering these "basic" tasks -- tasks that equate with quality survival.
Mobility
When I feel thirsty, I stop what I am doing and find something to drink. I go to the bathroom when I want to go and when I need to go. The disabled person who is dependent for mobility is at the mercy of his caregiver or helpful citizen. In a hospital they may sit in their room or hall until the overworked aide has the time to put them back to bed or take them to dinner. They are no longer on their own schedule, but on that of others. Independence in mobility is key to the quality of one's life. If they can propel their own wheelchair or ambulate independently they may be able to live alone. If they can transfer themselves from a wheel chair to a commode, they can stay alone during the day.
Social Relationships
That which makes us most human may be our ability to form relationships. We may not always form satisfactory relationships, but at least the potential is there. We have peers, colleagues, buddies, lovers and spouses. Freud described the balanced triangle of life as "to love-to work-to play." Disabled individuals see the triangle fractured in several ways.
Previous relationships may shatter because the foundations upon which they were built have been altered through physical, behavioral or cognitive changes. That which a partner loved most may no longer be present and that which they liked the least may now be exaggerated. The ability to form new relationships may be altered by being thrown in to a "new" peer group of the physically or mentally disabled, while the friends who initially visited at the hospital have now retreated to the safe haven of their peer group. The social fabric that was once tightly woven starts to unravel and the "quality" supplied through social relationships is diminished.
Work
Work is another corner of the triangle. Through work we enhance our self esteem, obtain recognition and develop a sense of self worth. At work I interact with a peer group, develop social relationships and find avenues for recognition. It is this concept of present day satisfaction that is so important. Most of us have a picture in our mind's eye of what we should be doing and our capabilities. Once achieved, few are willing to settle for less. If I tried to return to work after becoming disabled, I would probably not settle for less than being the Medical Director of a major rehabilitation hospital. Many injured or disabled workers face this dilemma, being asked to assume a new role that is perceived as less important or less interesting. The vocational rehabilitation of people with disabilities presents a special challenge because the hours spent in the work environment work are a major factor in the quality of one's life.
Future Prospects
While I was writing, my mind wandered to my next vacation, plans for the remainder of the year and what topics might be good ideas for future blogs. Our future plans fuel the hopes and aspirations of what we can still attain. Catastrophic injuries and illnesses may bring a sudden halt to an individual's or family's future plans as they do not know what to expect next. Serious illnesses and injuries suddenly change one's ability to pursue vocational and leisure interests. A lifestyle predicated on intellectual or physical strengths will now need to be modified. We must assist the disabled person so they can reach a point where they not only can accept their present day situation, but see hope and fulfillment in the future.
These are lessons not only for the disabled, but for all of us. It should not take a "near death experience" for us to reevaluate the importance of social and work relationships and to address the priorities in our lives. We all take these for granted until they are gone, forever.
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Silken Laumann: Just Start Dancing
Rich - hang in there. Few understand, as you know, but some of us truly do care. Feel free to reach out if you need a shoulder
Society is uncomfortable , Corporate America especially , with *them*. Disabled people are fantastic creative thinkers and more often than not, wise and optimistic. This is the gift within the curse at work ( and why some people when DX'd with cancer say that they " are greatful for having it" ) and having a fantastic attitude - and wild hopes and dreams ( like everybody else) fall under the expertise of 90% of the disabled. Attitudes which would put a marathoner to shame. People who work in physical rehab find it satisfying and often a joyful place to work for this reason
Those who need the bodily functions taken care struggle greatly w/the dependence on someone else... they feel they are burdening someone else, hate the loss of privacy and modesty (no matter how good a caregiver professional or family) that comes w/this part of care taking.
Asking for assistance is a skill that actually has to be taught to the injured/disabled b/c of the embarrassment (not of the actual bodily function) of losing the ability of self-care.
So stop assigning blame where there isn't blame to be had, esp for caregivers. The overall caregiving at this level is hard enough for all involved no matter how much one is loved.
And I'm young. : ((
Hang in there and get some more compassionate friends! God bless you : )
Peace,
Tom Gerdy
And I repeat: for me, I have no wish to live in a way that makes me utterly physically dependent on someone else, or unable to move, or speak, or write, or do any of the things I take pleasure from.
Since we got together, I've become much more aware of issues such as handicap accessibility and people's understanding of disabilities. Thank you for continuing to educate.
It's a good thing that more and more see people like your brother as "inconvenienced at times," rather than disabled.