November 13th, 2019. I can’t wait to walk. Until 23 years ago, I could be described as ‘Alexia Bouckoms, a dentist and public health researcher, mother of three children, and wife of Anthony John Bouckoms.' Then on February 25, 1996, while driving home from an indoor soccer game during a terrible windstorm, my life was altered in unfathomable ways when a tree fell on our car, resulting in the death of my husband and six-year-old son sitting in the back seat, in a spinal cord injury for me, and non-life-threatening injuries for my other two children. Since regaining consciousness 39 days later, I have strived to fashion a life out of the rubble. Most importantly, I can say that Sarah and Miles have gone on to lead enviable, well-adjusted lives. Upon gathering my physical, emotional, and psychological strength, I was able to provide a stable homestead and did my best to raise money and awareness regarding the possibility of restoring function following my spinal cord injury. At first I couldn’t imagine living without half of my body functioning. But now I can truly say I’ve had a remarkable time in spite of Not Walking. Sure I would be delighted if there were a ‘cure’ for my paralysis. However, I can’t wait to walk to live my life. I have to live it now.
Since having received a spinal cord injury (SCI) at the age of nineteen in 1984, I have encountered many other people with SCI. These people have all been in various stages of their lives. They have had their injuries for varying lengths of time. I have been investigating why some with SCI lead healthy and fulfilling lives while others seem to be in a continual state of poor health and discontentment.
I have identified the Five R’s of Rebirth from Spinal Cord Injury that I believe are essential to getting the person on the Upward Cycle of Rebirth as illustrated by the infographic above. While these five areas relate to the person’s individual functionality and psychology, they are heavily influenced by the actions and attitudes of society at large (represented by the arrows in the infographic).
Spinal cord injury begins with loss. This loss could perpetuate and become a Downward Spiral of Loss (see below) pushed along by an uncaring and exclusive society. Or the loss could turn into a Rebirth, as the person, with the help of a caring and inclusive society, restores and rebuilds his or her life into something that is both familiar and new.
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 beings 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 fewer 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 Pw/SCI
1. Access to Education – Enables Pw/SCI to be more gainfully employed in suitable and
meaningful careers. #MakesLifeEasier, #MakesLifeMoreEnjoyable
2. Access to Healthcare – Reduces health risks and incidences of secondary complications
for Pw/SCI. Improves general health and well-being. #MakesLifeEasier, #MakesLifeMoreEnjoyable
3. Accessibility – Allows Pw/SCI to engage fully with society in their lives.
4. Accessible Transportation – Enables Pw/SCI to travel to work, activities and events.
5. ADA Compliance – Reduces architectural barriers which deny access and
accommodations for Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
6. Advocacy – Creates rules, regulations, and laws regarding societal accessibility and
accommodations for Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
7. Affordable Equipment – Enables Pw/SCI to obtain assistive equipment and devices.
8. Assumed Competence – Increases the chances that Pw/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,
9. Comprehensive Rehabilitation – Enables newly injury Pw/SCI to learn techniques and
skills to better handle their SCI and live happier and more productive lives. #MakesLifeEasier, #MakesLifeMoreEnjoyable
10. Employment Opportunities – Increase the chances that Pw/SCI will find gainful and
meaningful employment. #MakesLifeEasier, #MakesLifeMoreEnjoyable
11. Funded Research – Lead to medical advances and technological developments that
directly benefit the lives of Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
12. Higher Standards – Increase the quality and performance of devices and raise the
expectations of acceptable performance for Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
13. Innovative Devices – Solve specific problems and continually improve the lives of
Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
14. Medical Advances – Help deal with and/or overcome particular medical issues created
by spinal cord injury. #MakesLifeEasier, #MakesLifeMoreEnjoyable
15. Positive Images – Help to diminish the negative stigma and stereotypes that currently
exists regarding Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
16. Raised Expectations – Increase the standards of society and Pw/SCI regarding products
and experiences, and the output performance of Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
17. Representation – Increase the societal visibility and influence of the needs and wants of
Pw/SCI. #MakesLifeEasier, #MakesLifeMoreEnjoyable
18. Respect – Increasing overall respect for Pw/SCI means that society considers their lives to be worth consideration and improving just like everyone else. #MakesLifeEasier, #MakesLifeMoreEnjoyable
19. Social Inclusion – Allows Pw/SCI to engage in fulfilling social activities and relationships
with other people. #MakesLifeEasier, #MakesLifeMoreEnjoyable
20. Societal Acceptance – Means that Pw/SCI are considered to be equal and valued
members of society. #MakesLifeEasier, #MakesLifeMoreEnjoyable
21. Universal Design – Enables Pw/SCI to access the environment just like everyone else.
22. Vocational Training – Increases the ability of Pw/SCI to become gainfully employed.
Appendix B - Negative Societal Factors for Pw/SCI
1. Assumed Need of Help – Results in society and Pw/SCI having an assumption of lack of
capability and independence. #MakesLifeHarder, #MakesLifeLessEnjoyable.
2. Barriers to Education – Make it more difficult for Pw/SCI to find jobs, meaningful careers and to support themselves. #MakesLifeHarder, #MakesLifeLessEnjoyable
3. Exclusion – When Pw/SCI are unable to fully engage in society due to social and physical
barriers. #MakesLifeHarder, #MakesLifeLessEnjoyable
4. Few Accommodations – Makes it more difficult or impossible for Pw/SCI to accomplish
certain activities. #MakesLifeHarder, #MakesLifeLessEnoyable
5. Few Opportunities – Results when Pw/SCI are unable to find employment, social outlets, and recreational activities. #MakesLifeHarder, #MakesLifeLessEnjoyable
6. High Unemployment – Leaves Pw/SCI dependent upon government subsidies such as
disability payments and unable to receive the many benefits of gainful employment. #MakesLifeHarder, #MakesLifeLessEnjoyable
7. Ineffective Design – Creates products and environments that are ineffective and
inhospitable for Pw/SCI. #MakesLifeHarder, #MakesLifeLessEnjoyable
8. Inspiration Porn – Results in Pw/SCI seen as “others” and different from “regular”
people which leads to more social exclusion. #MakesLifeHarder, #MakesLifeLessEnoyable.
9. Lack of ADA Compliance – Allows architectural barriers to exist that limit physical access
by Pw/SCI. #MakesLifeHarder, #MakesLifeLessEnjoyable
10. Lack of Accessible Transportation – Denies Pw/SCI access to jobs, social activities, and
recreation. #MakesLifeHarder, #MakesLifeLessEnjoyable.
11. Lack of Representation – Leads to Pw/SCI being neglected and not considered in public policy and private sector decision making. #MakesLifeHarder, #MakesLifeLessEnjoyable
12. Limited Access – Results in Pw/SCI not being able to engage fully in life.
13. Low Expectations – Results in society and Pw/SCI having no and/or low performance
standards for Pw/SCI. #MakesLifeHarder, #MakesLifeLessEnjoyable.
14. Low Respect – It the result of Society thinking that Pw/SCI are “less than” and therefore
not worthy of the full benefits of society. #MakesLifeHarder, #MakesLifeLessEnjoyable
15. Minimal Choices – Leaves Pw/SCI selecting products and options that are generic and
don’t work well for them. #MakesLifeHarder, #MakesLifeLessEnjoyable
16. Minimal Standards – Leaves Pw/SCI using substandard equipment and having low
expectations for performance by all concerned. #MakesLifeHarder, #MakesLifeLessEnjoyable
17. Negative Stereotypes – Leads to the belief that Pw/SCI are incapable or undeserving which leads to further societal othering. #MakesLifeHarder, #MakeslifeLessEnjoyable
18. Obsolete Devices - Hinders Pw/SCI for gaining the benefit of technological advances which would enable them to do more. #MakesLifeHarder, #MakesLifeLessEnjoyable
19. Overpriced Equipment – Results in Pw/SCI not being able to obtain desired and helpful
equipment. #MakesLifeHarder, #MakesLifeLessEnjoyable
20. Pity – Causes Society and Pw/SCI to think less of themselves and their lives.
21. Poor Healthcare – Results in Pw/SCI being more likely to have secondary medical
complications and be less healthy overall. #MakesLifeHarder, #MakesLifeLessEnjoyable
22. Shame – Leads Pw/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 Pw/SCI. #MakesLifeHarder, #MakesLifeLessEnoyable
23. Social Isolation – Deprives Pw/SCI from the benefits of human interaction.
24. Technological Stagnation – Leaves Pw/SCI not being able to take advantage of
innovation and major improvements in terms of assistive devices. #MakesLifeHarder, #MakesLifeLessEnjoyable