Thursday, July 26, 2012

Beyond the Borders: Getting young people out of Nursing Homes

Vitaglide Ceremony at Beth Abraham. George Gallego is far right
When I was in rehab learning how to live as a quadriplegic, my future didn't seem too bright. All I saw was a world of needing help with everything and losing a sense of my personhood. I could barely sit up, brush my teeth or feed myself. Would people just see my disability and not take me seriously? Enter in my mentor George Gallego among others who gave me hope that I could still live life and not just survive my paralysis. George is a paraplegic so he has quite a bit more physical capability than I do, but seeing how naturally he rolled into a room and carried himself made me see that my life wasn't over! Plus, brother had style and that made me want to get out of hospital attire and start dressing like myself again. I remember watching George, Jim Cesario and quad comrades like Alex Elegudin's every move and asking them tons of questions. "How do you pick up stuff from the floor?" "Do you use aids to type?" I still use their techniques and advise today. 

George began sharing more with me and told me his idea of developing an organization to get young people like me out of nursing homes and back into the community. I was very disappointed with the way social services at the hospital was advertising Beth Abraham, because it was very deceptive and less than honest. Social services in Beth Abraham are even more disappointing as they only focus on admitting/discharging but not on improving your life while here! There is nothing productive for young people here. They have great potential in this facility but fall short for a number of reasons. It's best to keep people here where medicaid/medicare will continue to foot the bill. Forget about empowering anyone to thrive beyond this place. 

I supported George and his idea and even took a grant writing class to further support his endeavors. I helped get a vitaglide for Beth Abraham and felt very motivated to learn what I could about how non-profits operate. I got a better sense of how Beth Abraham works as a non-profit organization and looked forward to seeing George's new organization develop. 

Unfortunately, I began to suffer from many UTIs and was in a tremendous amount of pain. I lost a lot of weight and was in the hospital frequently. The best solution for me was to have a mitrofanoff procedure which was a process in itself! It was a long, difficult surgery that took months to recover from. Everything that that I was pursuing came to a halt and a some points, I wasn't even sure if I would live. 

Since then, I'm doing better physically, but still struggling with trach issues. I've been pretty home bound and focused on eternal things. I take one day at a time. It's even been difficult seeing myself out of here because I keep having surgeries. But advocating for my fellow nursing home residents has stayed on my mind. Not only for the young, but for the old. They've had careers, raised families and served our country. They deserve compassionate care that recognizes them as people, not just lumps of meat on the bed. But there's something about being young and in nursing homes. It's very depressing because you see your life as not really going anywhere even though you have many more decades to live. George is dedicated to changing this and I believe it will change more than he knows. When people recognize how many people with disabilities are in the community, it will spur policy change and better urban design. Already, concepts like "aging in place" are catching fire in the real estate realm as baby boomers age and need accessible homes. People are starting to realize that they need to prepare for things like a knee replacement, difficulty reaching, caring for elderly parents. 



George Gallego and his wife Julia
Not everyone has the means to purchase and modify a place and accessible apartments/homes are hard to come by, especially in the city! Some young people with disabilities are incredibly motivated to play sports, finish school, or hone in on a skill for a career. Living in a nursing home limits these opportunities and can make one feel trapped. Many with disabilities have their whole lives ahead of them and have something to contribute to the community.  George is competing in the NYC Ironman Triathlon in August. This is a hardcore event and he will be the only paraplegic competing! He is raising funds for his organization, Wheels of Progress, Inc. Won't you join me in this cause and give a contribution? You can donate here

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