The Five R’s of Rebirth from Spinal Cord Injury
No person is truly independent of others. Human beings are inherently social creatures. We all depend upon each other in different ways to varying degrees. Therefore, the concept of "Independence" is relative to the situation and the environment. A spinal cord injury has the effect of changing the person’s view of his or her independence by reducing his or her level of physical function. Reconstructed Independence involves rebuilding this feeling of independence by enabling the person to accomplish tasks without or with as minimal direct assistance as possible. For example, this enabling can be accomplished by the person learning alternative methods of accomplishing tasks, through the use of technological assistance, and/or by societal accessibility. The goal is to provide the person with sufficient autonomy and self-reliance to reestablish his or her feeling of being an independent person.
Revived Sense of Identity
Many people who incur a spinal cord injury enter into an identity crisis. Those who were involved in highly physical pursuits as their way of life are particularly susceptible. A permanent spinal cord injury will alter or completely prevent them from engaging in the activity(s) that they previously used to define and express themselves as a person. In the same way that "You are what you eat", you also "are what you do" to a certain extent. For example, a person who has previously identified him (or herself) as primarily a "rock climber" or "runner" because he or she extensively rock climbed or went for runs will no longer be able to do so. Therefore, she may feel his identity has effectively "died" with the onset of his injury. This loss of identity coupled with being unable to engage in her chosen activities is a double blow to her psychological well-being.
Reviving his (or her) sense of self requires more than just involving him in the adaptive version of his chosen sport. Not all adaptive sports are created equal. Some, such as skiing, readily lend themselves to adaption, others such as lead rock climbing do not. Wheelchair racing is not the same as running despite both taking place in the same environment. Therefore, it is important to discover the essence of the activity that the person identified with.
For instance, maybe the person engaged in the activity primarily because of its exclusive nature. The draw was that "average" people could not do it. The very act of adaptation changes the activity such that is now "inclusive". It no longer holds the appeal it once had. Once the underlying nature of the person's identity and activities has been determined, the next step is to recreate it in alternate settings as much as possible. This process is essential for reviving the person's sense of identity.
Recreated Sense of Life Purpose
Along with a strong sense of identity, self-directed people usually have a direction in life that keeps them motivated and moving towards a particular long term goal. If a spinal cord injury makes this goal become or feel unobtainable, the person may feel lost and adrift with no direction or reason for being. If this loss of life goal translates into feelings of uselessness, the person is at risk of descending into a state of apathy and/or depression. Therefore, it is important for the person to be exposed to opportunities currently available for people with SCI.
Additionally, to also keep in mind that more opportunities are likely to appear in the future. Societal attitudes play a large part here. It is likely that the person's original goal was tied to a societal achievement in some manner. Therefore, the more accommodations and opportunities available in society, the more likely the person will be able to achieve a similar or meaningful life goal.
A person's community is many times centered around the activities he or she engages in. If a spinal cord injury prevents the person from engaging in those activities, he (or she) will naturally feel and be isolated from his community. As noted previously, human being are social creatures and social isolation is a major cause of unhappiness. In fact, extended social isolation has been proven to be a cruel form of punishment. The amount of social isolation a person encounters is directly related to how society treats people with disabilities. More opportunities, access, and activities will lead to less feelings of isolation and vice-versa. Negative societal attitudes about people with disabilities creates situations where some people not only are isolated from the rest of society, they also isolate themselves from other people with disabilities. They do not want to be like "them". They purposely shy away from others with similar disabilities. This situation leaves the person without a community to engage with. Reestablishing a community does not happen overnight. Not all people with spinal cord injuries are going to instantly bond. People are vastly different. Therefore, it is important for the person to connect with people that he or she has something in common with, over and above their respective disabilities. The more people with disabilities are included in society, the more people's communities become integrated and the less able-bodied vs. disability centered they become.
The recent worldwide availability of social media has made it possible for people with spinal cord injuries to connect with others with similar interests and personalities. While online interactions are not as satisfying or deep as person-to-person ones, they provide a means for people to connect when other means are not available. For a person who is hesitant to dive into the SCI community, starting online is an easy way to get started on a limited basis.
Reconciled Control of Bodily Functions A spinal cord injury disrupts a person's voluntary and involuntary control of a number of bodily functions (bowel, bladder, temperature, circulation, etc.) to varying degrees depending upon the specifics on the injury. This disruption cannot be cured, but it can be managed and controlled to a certain extent through medical devices and procedures. These methods don't restore the person's lost functions, but they do allow for him or her to have "reconciled" control. In this case "reconciled" means finding and using a solution that isn't ideal, but it is functional to a certain degree.
It is imperative for the person to gain a level of reliability regarding his or her bodily functions in order to participate in the activities of life. Reliable doesn't mean "event free". It means reducing the frequency of incidents and mitigating the consequences of unwanted events to a manageable amount. For a person with a new spinal cord injury, developing "reconciled control" should be a high priority because it is an essential part of the rebirth process.
There is no step-by-step process that a newly injured person can go through which will definitively result in the Upward Cycle of Rebirth from spinal cord injury. Much depends upon the person's actions, attitude, and level of injury. Much also depends upon his or her environment in terms of family, friends, and society. There are many factors at play. In addition, just as the Downward Spiral is not a straight journey neither is the Upward Cycle. In both cases, there are advances and setbacks along the way. Life is a journey not a destination, and the path rarely follows a straight line.
The purpose of the associated infographic is to show the interconnected nature of both the actions and attitude of the person with spinal cord injury and also society in determining the direction of his or her journey in life. Neither the individual nor society have the total say on the person's outcome. They are many factors that combine and/or conflict to determine the final outcome. That being said, the more favorable societal factors present, the more likely the person will enter and remain on the Upward Cycle of Rebirth.
When it comes to societal factors, every little bit helps or hurts. There is no one factor that is definitely better or worse than all the rest. They have a cumulative effect. All those that want to improve the lives of people with spinal cord injury are effectively part of a team. Even if they are working in areas as diverse as advocacy, medical research, and sports and recreation, they are collaborating on building final outcome – Rebirth from Spinal Cord Injury.
Appendix A: Positive Societal Factors for Pwd/SCI
Access to Education – Enables Pwd/SCI to be more gainfully employed in suitable and meaningful careers. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Access to Healthcare – Reduces health risks and incidences of secondary complications for Pwd/SCI. Improves general health and well-being. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Accessibility – Allows Pwd/SCI to engage fully with society in their lives. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Accessible Transportation – Enables Pwd/SCI to travel to work, activities and events. #MakesLifeEasier, #MakesLifeMoreEnjoyable
ADA Compliance – Reduces architectural barriers which deny access and accommodations for Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Advocacy – Creates rules, regulations, and laws regarding societal accessibility and accommodations for Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Affordable Equipment – Enables Pwd/SCI to obtain assistive equipment and devices. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Assumed Competence – Increases the chances that Pwd/SCI will be considered as viable partners, hired for jobs, promoted, elected to public office and positions of authority and importance, and more. #MakesLifeEasier, #MakesLifeMoreEnjoyable,
Comprehensive Rehabilitation – Enables newly injury Pwd/SCI to learn techniques and skills to better handle their SCI and live happier and more productive lives. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Employment Opportunities – Increase the chances that Pwd/SCI will find gainful and meaningful employment. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Funded Research – Lead to medical advances and technological developments that directly benefit the lives of Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Higher Standards – Increase the quality and performance of devices and raise the expectations of acceptable performance for Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Innovative Devices – Solve specific problems and continually improve the lives of Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Medical Advances – Help deal with and/or overcome particular medical issues created by spinal cord injury. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Positive Images – Help to diminish the negative stigma and stereotypes that currently exists regarding Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Raised Expectations – Increase the standards of society and Pwd/SCI regarding products and experiences, and the output performance of Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Representation – Increase the societal visibility and influence of the needs and wants of Pwd/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Respect – Increasing overall respect for Pwd/SCI means that society considers their lives to be worth consideration and improving just like everyone else. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Social Inclusion – Allows Pwd/SCI to engage in fulfilling social activities and relationships with other people. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Societal Acceptance – Means that Pwd/SCI are considered to be equal and valued members of society. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Universal Design – Enables Pwd/SCI to access the environment just like everyone else. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Vocational Training – Increases the ability of Pwd/SCI to become gainfully employed. #MakesLifeEasier, #MakesLifeMoreEnjoyable
Appendix B - Negative Societal Factors for Pwd/SCI
Assumed Need of Help – Results in society and Pwd/SCI having an assumption of lack of capability and independence. #MakesLifeHarder, #MakesLifeLessEnjoyable.
Barriers to Education – Make it more difficult for Pwd/SCI to find jobs, meaningful careers and to support themselves. #MakesLifeHarder, #MakesLifeLessEnjoyable
Exclusion – When Pwd/SCI are unable to fully engage in society due to social and physical barriers. #MakesLifeHarder, #MakesLifeLessEnjoyable
Few Accommodations – Makes it more difficult or impossible for Pwd/SCI to accomplish certain activities. #MakesLifeHarder, #MakesLifeLessEnoyable
Few Opportunities – Results when Pwd/SCI are unable to find employment, social outlets, and recreational activities. #MakesLifeHarder, #MakesLifeLessEnjoyable
High Unemployment – Leaves Pwd/SCI dependent upon government subsidies such as disability payments and unable to receive the many benefits of gainful employment. #MakesLifeHarder, #MakesLifeLessEnjoyable
Ineffective Design – Creates products and environments that are ineffective and inhospitable for Pwd/SCI. #MakesLifeHarder, #MakesLifeLessEnjoyable
Inspiration Porn – Results in Pwd/SCI seen as “others” and different from “regular” people which leads to more social exclusion. #MakesLifeHarder, #MakesLifeLessEnoyable.
Lack of ADA Compliance – Allows architectural barriers to exist that limit physical access by Pwd/SCI. #MakesLifeHarder, #MakesLifeLessEnjoyable
Lack of Accessible Transportation – Denies Pwd/SCI access to jobs, social activities, and recreation. #MakesLifeHarder, #MakesLifeLessEnjoyable.
Lack of Representation – Leads to Pwd/SCI being neglected and not considered in public policy and private sector decision making. #MakesLifeHarder, #MakesLifeLessEnjoyable
Limited Access – Results in Pwd/SCI not being able to engage fully in life. #MakesLifeHarder, #MakesLifeLessEnjoyable
Low Expectations – Results in society and Pwd/SCI having no and/or low performance standards for Pwd/SCI. #MakesLifeHarder, #MakesLifeLessEnjoyable.
Low Respect – It the result of Society thinking that Pwd/SCI are “less than” and therefore not worthy of the full benefits of society. #MakesLifeHarder, #MakesLifeLessEnjoyable
Minimal Choices – Leaves Pwd/SCI selecting products and options that are generic and don’t work well for them. #MakesLifeHarder, #MakesLifeLessEnjoyable
Minimal Standards – Leaves Pwd/SCI using substandard equipment and having low expectations for performance by all concerned. #MakesLifeHarder, #MakesLifeLessEnjoyable
Negative Stereotypes – Leads to the belief that Pwd/SCI are incapable or undeserving which leads to further societal othering. #MakesLifeHarder, #MakeslifeLessEnjoyable
Obsolete Devices - Hinders Pwd/SCI for gaining the benefit of technological advances which would enable them to do more. #MakesLifeHarder, #MakesLifeLessEnjoyable
Overpriced Equipment – Results in Pwd/SCI not being able to obtain desired and helpful equipment. #MakesLifeHarder, #MakesLifeLessEnjoyable
Pity – Causes Society and Pwd/SCI to think less of themselves and their lives. #MakesLifeHarder, #MakesLifeLessEnjoyable
Poor Healthcare – Results in Pw/SCI being more likely to have secondary medical complications and be less healthy overall. #MakesLifeHarder, #MakesLifeLessEnjoyable
Shame – Leads Pwd/SCI to have lower feelings of self-worth and confidence and to not want to be in public. Leads the general public to not want to associate with Pwd/SCI. #MakesLifeHarder, #MakesLifeLessEnoyable
Social Isolation – Deprives Pwd/SCI from the benefits of human interaction. #MakesLifeHarder, #MakesLifeLessEnjoyable
Technological Stagnation – Leaves Pwd/SCI not being able to take advantage of innovation and major improvements in terms of assistive devices. #MakesLifeHarder, #MakesLifeLessEnjoyable