Living Well with SCI/D
Thank you, Dr. Ruby for this opportunity. It is exciting to hear about the research! We at the Greater Boston Chapter “GBC” of the United Spinal Association hope for a cure tomorrow, too. We emphasize living well with spinal cord injuries & disorders, today, striving to make each day the best one possible.
Imagine this: Suddenly, without warning, your life has been devastatingly altered by an injury to your spinal cord. You can no longer walk. Your hands and arms may not function well. Your bladder & bowels have gone on strike. Perhaps breathing is something you can no longer take for granted. But you’ve survived! Now, how to figure out how to live life in a different way, find a new normal.
Imagine that you’ve received the best rehab possible. You’ve learned how to use wheels & assistive tech as alternative ways of doing things. But your world still seems upside down. What would it mean to have an organization, whose mission is all about Quality of Life, there to help you rebalance your life?
The GBC is based at Spaulding in Charlestown, the highly acclaimed rehabilitation hospital. GBC was founded by those affected by SCI to assist others to RISE Above Paralysis — to Reach individuals & families affected by spinal cord injury & disorder Inspire the newly injured through role models Support individuals & families as they begin their post injury journeys Empower individuals to reach their goals & dreams
Through its nationally recognized Peer Visitation Program, trained peer mentors help people navigate post-SCI life, learn how to transition back into the community, and work on meeting their goals to lead a fulfilling life. And peer supports are also available for family members, to help everyone affected, in the hospital and out.
And connecting with community is important anywhere along that path. Years after my diagnosis, I am grateful to have found a community in the GBC. It means being with people who understand, who know that life is hard, but it isn’t over. That one can enjoy a meaningful life. It is sharing tips in weekly support groups or monthly educational meetings, or getting together to have fun, like sailing on a catamaran or rolling around a park, seeing how anything is possible for people with SCI & understanding how being together in community can make all the difference...
From this lived experience, we know that we cannot wait. There are so many issues that we need to be proactive about. We need more research to help with health conditions we deal with (pressure sores, pain, utis, osteoporosis, cardiac & respiratory) that affect our well being & can make life difficult...
We can still be contenders in life, but we need a level playing field in our society. For it is not the inability to walk that is most challenging. Often, it is simply being left out. It is a lack of awareness that not all problems were solved by the passage of the ADA. It is the continued obstacles we face everyday...
The ADA was a terrific start, but it is limited, & not well regulated. Much still needs to be done to make things just. We cannot do this on our own. We need allies —citizens & those in government. These are the kinds of issues government can help remedy. We are seeking fairness. Our needs are the same as everyone— housing, work, transportation, healthcare. We just need these to be accessible. When we are denied what others get by default, that is discrimination.
Often the biggest challenges are what everyone else gets to take for granted. I have to worry, everywhere I go, if someplace is accessible — from exam tables at the Dr’s office or the chair at my dentist. If I take the T or a commuter rail, will my stop be accessible? Just this week, I was denied the opportunity to express my opinion at a meeting, because it was held in a place with stairs. If I want to shop or go to lunch with friends, will I be able to go in? Every time something like this happens, I am reminded that I am not welcome. It isn’t intentional — it is even worse. I have been left out, not even considered... So, please consider this: picture not being able to enter your home, not being able to work because your workplace is no longer accessible to you. Being denied entry to so many places you’ve always been able to go...
Disability rights are human rights. And the GBC advocates for these rights, as well as SCI research. Here in MA, there is a severe shortage of accessible & adaptable housing. People with disabilities & the elderly are frequently forced to leave their homes, and often end up in nursing homes or homeless. Workplaces are often inaccessible, leading to high unemployment rates & poverty. I am lucky. I am here today because I was able to get an accessible apartment. I am here only because this building & meeting hall are accessible.
Currently, even in new or renovated buildings, employee workspaces are not required to be accessible. Currently, buildings are exempt from accessibility requirements if built before 1991,even in gut renovations. If the government of MA passes the AAB Bill - An Act Relative to the Architectural Access Board (H. 2029, S. 1441), it would expand the Commonwealth’s power to require developers to address accessibility needs when planning new construction & renovation of large buildings. The AAB bill will fix a state law that provides a loophole to continue discrimination. Let’s work together to ensure equal access to employment & housing. We need allies to right these wrongs & pass this legislation. Join us — Together, we can do this! Please see us at GBC’s table for more info re: the AAB bill, ask us if you’d like to accompany us this afternoon to visit our reps. And thank you for helping make MA accessible for all!
Written by Ellen Leigh
