2020 Reflection
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Note: The following blog was written in 2020 based on my life experiences. There have been some major life events that have occurred regarding this portion of my advocacy journey. Before I share that, I must share this for context. I hope you enjoy it, and I will provide part two next week.
The word independence always makes me laugh. Individuals with disabilities are always pushed to be more “independent.” No one is truly independent; we all need a little help. I need more than most; there’s no denying that. I have a very good support system to help me live my day-to-day life. They help me with such things as bathing, dressing, and bathroom necessities. For me, this is not a big deal. It is the only way I know life. If and when I do anything out of the ordinary, that’s when things get a little bit more complicated.
As I mentioned previously, my life as a disability advocate was very unexpected. I’ve been presented with several different opportunities, and I do my best to capitalize on as many as I can. At this stage in my life, I want to make as much of an impact on the lives of others as possible. I want the work I do to last. I don’t want a fancy award or a statue. Just to see tangible evidence of what I have done. The proof will be seeing the smile on someone’s face. The majority of my work focuses on system change. I don’t work against the system; I work within it to come up with common-sense solutions.
I was recently given the biggest opportunity of my disability advocacy career, but I don’t know if I can do it because of my disability. Trust me, I know how ironic that sounds. The position is as follows represent seven states on a national level to advocate on their behalf. The organization is called SABE.
Self-Advocates Becoming Empowered is a national self-advocacy organization. Run by and for people with disabilities, completely independent of any political affiliation. In July 2018. I attended their national conference. I was asked to seek one of the representative positions. I would represent seven states as their lead advocate. I decided then that I would give myself two years to get myself ready and make all the right connections.
I would only have to travel four times a year to attend the organization’s meetings. The rest I can do remotely thanks to modern technology like Skype and FaceTime. The tricky part is that I have to find one person who is willing to travel with me to help with my personal care four times a year for a 2-year term limit. Not many people would trust a stranger with personal tasks like this. I can’t help but feel guilty. I always feel like I’m bothering someone in some way. There is so much planning and preparation that takes place beforehand. Most get scared off. I do not have a lot of medical needs. Getting me ready for the day and getting me ready to go to sleep are the hardest parts. It’s those little things that people take for granted. That’s one of the main reasons I started this blog. I want to raise awareness about the real lives of people with disabilities.
I’m not afraid of doing the work. Some people will be hard to deal with. I am sure about that. I still have to write up the proposal to acquire the funds I would need to attempt this venture. I know I must try. The purpose of life is to live life. I know there’s a good chance I will fail. Even if I get everything I need, there’s no guarantee I will win the election for the position. I don’t want to say, “What if?” I want to say, “I did.”
“In their hearts humans plan their course, but the Lord establishes their steps.” Proverbs 16:9 NIV
2020. I laughed while typing those numbers. The year the world changed, I spent two years calling people in different states. I would tweet their state organizations to introduce myself. To get ready for the next conference. I found people willing to do my personal care. Like everybody else, they postponed their conference, but not by one year but by two instead. 2022. In today’s world, that’s a lifetime! The disability community has always had a lot of turnover. In two years, every person I talk to will most certainly be gone.
I never say never to anything, but it’s impossible to know where my life will be by then. Planning from 2018 to 2020 was easy because the world was in its established routine. Now there is no routine. One of the main reasons I wanted the position was to travel across the country four times a year. I’ve only ever gone to Puerto Rico and Disney World. It would have been cool to see new places.
I am looking for a new opportunity to make a difference for both the world and myself. What opportunities have you not taken advantage of? What things have not worked out for you? I hope this gives you something to think about. Thank you for your time. Another blog will come next Wednesday, as usual. All comments are welcome.
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