Reeve Foundation Ambassador Robin Wilson-Beattie shares about a conference which she attended in Atlanta, GA a few weeks ago
A couple of weeks ago I had the rare experience of being snowed in. Atlanta got snow and ice, and the city seemingly came to a halt. The Deep South is not exactly known for harsh winter weather, so it was definitely something to behold. Most people were stuck at home- but not me! I was fortunate enough to be snowbound at a retreat center, attending the inaugural Georgia Winter Institute. This amazing event was a conference sponsored by The Arc of Georgia, Georgia State University and Center for Leadership in Disability, and the Georgia Council on Developmental Disabilities. The main focus was to bring people together to discuss unique ways that focused on person centered planning, storytelling, and understanding that everyone has gifts to give to communities. The attendees included professionals in the disability field, self and systems advocates, and family members of people with disabilities. I seemed to be the only person there with a spinal cord injury, so I was happy to represent! LOL
It was a very intense 3 day session, and it took me a week to fully absorb and digest everything I learned. For once, I found myself doing more listening than talking in the workshops (trust me- silent is not a word used in conjunction with my name!). I was worried that I would miss out on hearing some of the wonderful ideas and action plans others were proposing on building better communities, and ensuring that people with disabilities get to make decisions on their own lives- the way they want to. The workshops were led by Tom Kohler, John O'Brien, Connie Lyle O'Brien, Bruce Anderson and De'Amon.
Due to the generosity of the Georgia Advocacy Office, every participant received a copy of the book, Waddie Welcome & the Beloved Community, by Tom Kohler and Susan Earl. Tom and Susan also read excerpts and talked about what it meant to know Mr. Welcome, and why this book was created. This powerful book showed how one person with a courageous spirit could touch the lives of so many people, forming a community of support, person by person. Mr. Welcome of Savannah, Georgia had a dream of living in a real home, with a family, and leaving the nursing home he was stuck in. How this was accomplished was truly astounding, given his age, disability, race, and economic status. There were so many lessons that can be explored from this book, but there were a couple that stood out for me.
Mr. Welcome’s story demonstrated that no matter what stage your life is in, you have the ability to make changes and decisions. Mr. Welcome was in his 70’s when he worked on making his dream come true. He was an African American senior citizen with cerebral palsy, and with the support of some remarkable allies, he was able to live in a real home. He wanted out of that nursing home, able to live in a house with a family, where he could smell food cooking, hear children playing, and socialize in his local community. What a powerful lesson! As a person with an SCI, I often meet other people with spinal cord injuries who feel that they do not have control over their lives, anymore. Sometimes, as people with disabilities, we feel as if certain goals are forever out of our reach. As we age, we especially think they are impossible to obtain. Mr. Welcome’s story is a prime example that this is not true, and if you believe in it strongly enough- you can make it happen.
I also feel that the other important lesson this book shared is that with the support of allies, people with disabilities have the ability to expand the definition of family and build an inclusive community of choice. Mr. Welcome shared his gifts of hope, humor, listening- and his supporters were able to accept and be inspired by them. This sort of exchange is powerful, and strengthens communities. We all are stronger when we open ourselves up to change and inclusion. I am one of those people who see disability as a natural part of the human condition. I encourage people with disabilities to take the initiative and reach out to others! No one on this planet would be here, without others, regardless of ability. We have the right to be here, exist, and be a part of society. Yes, you may meet with some rejection, but as most us know- persistence is the key. Tom Kohler met with 39 rejections before he found a citizen advocate for Mr. Welcome. Although this fact was printed in the book, I insisted on asking Tom privately if it really took that many times, for surely I thought that was a slight exaggeration. (After all, most people would have given up long before then!) Evidentially, recalling this is still painful, because he assured me that yes- he was told no by 39 people, until he found a citizen advocate in Lester Brown. Amazing!
This was a long post, but as I said- it took a while to digest everything I learned. After the Institute, I was one of the lucky folks who did not live far from the retreat center, and slowly made my way home. It was the first time I drove on ice, period, never mind since I became injured! (Can I mention again that I am Southern born and bred?) I safely made it home, and holed up watching movies, TV, and reading until my wonderful city thawed. I was very much over it, and was grateful when the roads were clear again, and I could get out and about!
I would like people to share with me their personal views of what community is. It is how we all learn from one another, and I am a firm believer in the healthy exchange of knowledge! What gifts do you have to share? Have you managed to establish a unique support system? Until next time….
Robin Wilson-Beattie
Reeve Foundation Ambassador
Robin Wilson Beattie, Reeve Foundation Ambassador introduces herself to the community.
I can not tell you how thrilled I was to say goodbye to 2010 and hello to 2011! There is something very liberating about being able to make a fresh start, and resolve to do tackle life in a positive and beneficial manner. I enjoy making a list every new year, and establish personal goals and aspirations for the upcoming months.
As a newly minted Christopher and Dana Reeve Foundation Ambassador, one of my 2011 resolutions was to write more. Allow me to introduce myself! I am Robin, and I live in Atlanta, GA. I’m the proud mother of one wondrous daughter, named Abigael. I am a deep fried Southern geeky girl, and I live a full and active life. I love laughing, reading, traveling, writing, camping, exploring my community, comics, sci-fi, learning, volunteering...and have a billion other eclectic, diverse interests and activities
I am also a person living with a spinal cord injury. In 2004, a rare congenital birth defect was found inside of my spinal cord. It was an intradural spinal arteriovenous malformation (AVM). My AVM was bleeding, causing all sorts of neurological problems. I had never heard of it, and being told I was dying from it was extremely frightening. When you throw in terms like “experimental surgery”, “extremely rare”, and have a hard time finding understandable information on the condition- the future can look uncertain and bleak. However, I was given a ray of hope. A week before the surgery, I found out I was pregnant with Abigael. While this bit of news did not make my surgical team the least bit happy, I was thrilled beyond belief! Life was definitely about to become unusual and different! (I will have to share a few entries from the journal I kept at the time, in order to give a more vivid depiction, at a later date.)
Fast forward to 2011. Abigael is now 6, and my injury is classified as C-4 quadriplegia incomplete. With the aid of a cane, I am able to walk short distances. I use a power chair for longer sojourns. People see me walking, and assume that I am physically capable of doing more- but they see me in my chair, and make the opposite assumption. In the beginning, I did not know how to discuss the anomalies of my SCI, and why I was able to perform some tasks, and not others. These days, I have no problem speaking up for my needs and capabilities. I now have a career path, teaching other people with disabilities how to advocate for themselves! In 2004, I never would have imagined I would be where I am today. Losing what I had in a physical sense caused me to gain so much more mentally and spiritually. Sometimes, I feel like once you face death- hell, you can face anything!
Today, I choose to look ahead. Much like making New Years resolutions, I have learned that I must focus on the present, and turn my eye towards the future. I may occasionally visit the past (like looking at my Abigael’s sweet baby pictures, and missing holding a sweet little infant in my arms!), but I can not waste precious energy living there. I hope to share glimpses and personal insights and experiences, as they relate to living with a spinal cord injury. I invite y’all to read, comment, and share bits of your own lives, as well. I’ll discuss everything from parenting, rejoining the world of work, advocating, socializing and participating in unique and fun activities. Here is to 2011- may it be the best year, yet!
Robin Wilson Beattie
